Barrier Free Envt

Community Based Rehabilitation (CBR)

Community Based Rehabilitation & Developing Countries Issues

This session features recent video reports on community based services in the world, as well as overviews by international agencies.

1. Breaking Barriers Produced 1991 by the UN Film & TV Unit to promote understanding of the Decade of Disabled Persons. It is an overview of needs of disabled people in developing countries from their points of view, interspersed with a few segments about progress in reducing architectural barriers in developed countries.

2. Educating Communities about Disability is a video presenting various puppet shows performed throughout Guyana that were designed to communicate messages about disability. The video documents how the community-based rehabilitation workers were trained as and became puppeteers who developed their own scripts, made puppets, props and performed the shows around the country.

3. Goro-Goro Cakar Pitik ("Chicken Legs") 1995 Public Education video on polio prevention, disability awareness and CBR, produced for use in Javanese community meetings

4. Introducing Children with Disabilities into Mainstream Schools Produced by the Guyana Community Based Rehabilitation Programme in 1995. It is a part of a video series partially supported by UNESCO and is designed for teachers and parents. The first "Schools for All" aims to promote the idea of enrolling children with disabilities into ordinary schools and the second "Working Together in Schools" aims to assist parents and teachers who have a disabled child already attending school. - Available from

5. It's a Challenge (Insayeya) A winner of the 1992 RI World Congress Film Festival, it documents the growth of CBR and other services for disabled persons in a small African country, through both governmental and non-governmental support

6. Kamala First Prize winner from the 1994 CBR Film Festival of the International League of Societies of Persons with Mental Handicap. Story of how a mother of a child with cerebral palsy becomes a successful community worker.

7. Keeping in Touch: Parent Massage Instruction for Infants through the Teen Years. Although this video is not specifically designed

for those working with children with disabilities, its simple and didactic instruction can be useful to train parents and others on the importance of infant stimulation for all children. The video is endorsed by the International Association of Infant Massage Instructions and uses a combination of Indian and Swedish massage techniques that both calm and stimulate the young child's senses.

8. Life Must Continue is an International Labor Organization film documenting some of its major projects to stimulate employment for disabled persons in Kenya. Although the focus here is in one African country, current international approaches to community-based programs are also discussed.

9. Making Our Own Way is a comprehensive story about the work of people with disabilities in Namibia. It is a 45 minute video produced by OXFAM-UK and details the specific kind of self-advocacy that adults with disabilities are involved in, from liasing with the government, starting their own self-supporting vocational activities, and registering their own national organisation. The "National Organisation of Disabled People of Namibia" was formed in 1991 and the work of several individuals and the organisation is depicted. - Available from:National Organisation of Disabled People of Namibia - P. Bag 5571, Oshakati, Namibia, 20211-2277. Tel. 09 264 61 223545.

10. The CBR Programme in Ghana, West Africa is a 29 minute video produced by the Norwegian Association of the Disabled and is designed to demonstrate how "CBR is a tool for equal opportunity and full participation for every disabled person". The video includes several soundbites from community members regarding how CBR benefited not only people with disability but the entire community. It includes several case studies of people who, for example, were previously dependent and now are active contributors to their family in a variety of ways. The project and community members state that their best achievement has been awareness creation and attitude change. The film can be used effectively where a new CBR programme has been initiated and where project staff are looking to expand the roles of various personnel. - Available from: Norwegian Association of the Disabled, Schweigaardsgt. 12, P.O.Box 9217 Vaterland, Oslo 1, 0134 Norway. Fax. 47 2 217 6177.

11. But Who Will Chase the Elephants Away? Their names are Christopher, Steven, Hazidi, Clever and Siakatondo and all have various disabilities. There are also the mothers of deaf children, dwarfs or mentally disabled children. The camera came to them in their villages, tribes and families in several regions of Zimbabwe. They talk of their experiences in their vernacular language. Africa, it appears, views this problem in a different

way and proposes solutions which deserve consideration. Directors: Alain Casanova and Monique Saladin. A 1987, 58 minutes video. English original version. - Available from: Starfilm International: 91 rue Saint Honoré 75001, Paris, France. Tel. 33 1 40 26 11 60. Fax. 33 1 45 08 80 99.

12. Video courses produced by Leonard Cheshire Foundation International for use in training in the field of disability. One series is entitled Community and Disability and includes various aspects of community living, education and rehabilitation from countries as diverse as Hong Kong, Guyana, Jamaica, Malaysia, Morocco and others. The series entitled A Better Life is primarily for staff. Families and volunteers who work with people having mental handicap. And Training for Work illustrates a range of vocational training options for people with disabilities. All packages are available in English and are at low cost to organisations in the developing world. - Available from: Diana Khoo, Regional Training Officer, Cheshire Homes Far Eastern Region, 515Q Jalan Hashin, Tanjong Bungah, Penang, Malaysia.

13. Videos for Working with Children with Developmental Delays is a three part series developed by UNESCO in 1992 and is intended for community workers, primary health personnel and parents of children with disabilities. Manuals accompany the videos and each video is based on work in an individual country. These include: Malawi (50 minutes), Sri Lanka (50 minutes), and Uganda (60 minutes). The cost is $40.00 each. - Available from: UNESCO, Special Needs Education, Division of Basc Education, 7 Place de Fontenoy, 75352 Paris 07-SP, FRANCE. Fax: 33 1 45 68 56 31.

14. Videos from 3D Projects in Jamaica, W.I.: 3D Projects is a community-based rehabilitation project (CBR) based in Jamaica. They have worked for over 20 years with a network of rural parent and community groups towards full participation and equality for children and adults with disabilities. They conduct training courses in the Jamaica, the Caribbean and internationally. The following are the titles of 12 videos with accompanying manuals on a variety of aspects of childhood disability and CBR: Parent Training, Parent-to-Parent Counselling, Child Rearing Skills, Income Generating, Teacher Orientation in Childhood Disability, Work Experience Programme, Early Detection and Intervention in Childhood Disability, Assessment of Children with Disabilities, Stroke Rehabilitation, Orientation on Disability, Drama in Community Education and Conducting Disability Surveys. Each cassette costs $30.00. - Available from: 3D Projects, 14 Monk Street, Spanish Town, St. Catherine, Jamaica.

15. Community-based Rehabilitation: Principles and Organisation is a review of the CBR services of WHO Collaborating Centre for Rehabilitation at the Sun Yat Sen University of Medical Sciences in Guangzhou, China and the Hong Kong Society for Rehabilitation. It includes the steps in setting up a CBR project and features Prof. Sir Harry S.Y. Fang and Prof. Zhou Dahong. 25 minutes. - Available from: Hong Kong Society for Rehabilitation, WHO Collaborating Centre, 7 Sha Wan Drive, Pokfulam, Hong Kong. Fax: 852 2855 1947. Email: [email protected]

16. Fundamentals of Movement is a 23 minute video that introduces CBR workers in Guangzhou, China's CBR project to normal movements and the rationale for exercise in rehabilitation. It includes: range of motion, muscle strength, and various assisted exercises. - Available from: Hong Kong Society for Rehabilitation, WHO Collaborating Centre, 7 Sha Wan Drive, Pokfulam, Hong Kong. Fax: 852 2855 1947. Email: [email protected]

17. Helping People with Spinal cord Injury demonstrates checking for pressure areas, strengthening exercises, transfers, wheelchair use and training for activities of daily living. It stresses an active social life and return to work. The video is 23 minutes and was filmed and edited at the Sun Yat Sen university of Medial Sciences as part of the WHO Collaborative CBR Project. - Available from: Hong Kong Society for Rehabilitation, WHO Collaborating Centre, 7 Sha Wan Drive, Pokfulam, Hong Kong. Fax: 852 2855 1947. Email: [email protected]

18. Helping People with Back and Neck Pain demonstrates resting positions, exercises for mobility and strength and tips to improve posture in lifting heavy objects and in performing everyday activities. It is 29 minutes and is a video of the WHO Collaborating Project in China with the Hong Kong Society for Rehabilitation. .-Available from: Hong Kong Society for Rehabilitation, WHO Collaborating Centre, 7 Sha Wan drive, Pokfulam, Hong Kong. Fax: 852 2855 1947. Email: [email protected]

19. Helping Children with Cerebral Palsy is a video from the WHO Collaborative CBR Project in Guangzhou, China. It explains common problems of infants and young children with Cerebral Palsy. It demonstrates mothers playing with and exercising their children as well as small groups of children playing and learning together. 22 minutes. - Available from: Hong Kong Society for Rehabilitation, WHO Collaborative Centre, 7 Sha Wan Drive, Pokfulam, Hong Kong. Fax: 852 2855 1947. Email: [email protected]

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20. Helping People with Stroke is a step-by-step guide to helping the person with hemiplegia including bed exercises, sitting, standing, walking and managing daily activities. It is based at the WHO Collaborative CBR Project in Guangzhou, China. - Available from: Hong Kong Society for Rehabilitation, WHO Colla-borating Centre, 7 Sha Wan Drive, Pokfulam, Hong Kong. Fax: 852 2855 1947. Email: [email protected]

21. Glimpses of Global Efforts in CBR is a 45 minute compilation of the strides many in the field of community-based Rehabilitation around the world in the last decade. It was produced by Rehabilitation Internation in 1998 under the direction of Media Consultant, Barbara Kolucki and editing done by award-winning director of women's films, Mrs. Raman Mann of India. It is narrated by Anuradha Mohit, the Director of the National Association of the Blind in India. The video consists of portions from existing videos and is divided into three segments. The first concentrates on work done with children who are disabled; the second on integration of children and adults into school, work and community activities. And the third segment includes examples of landmark public education videos that include animation, puppetry, low-cost public service announcements and programmes where people with disablities are integrated into maintream media. This video provides a comprehensive overview of the "state of the art" of CBR in the 1990s and can be used for training and advocacy as well as to give CBR programmers ideas as to the types of videos they might produce. - Available from:Rehabilitation International, 25 East 21 Street, NY, NY 1010 USA. Fax: 1 212 505 0871. Email:

CBR may be defined, according to three United Nation Agencies, ILO, UNESCO, and the WHO, as a "strategy within community development for the rehabilitation, equalization of opportunities, and social integration of all people with disabilities. CBR is implemented through the combined efforts of disabled people themselves, their families and communities, and the appropriate health, education, vocational and social services" (WHO, 1994)

Community-based rehabilitation (CBR) is a strategy for enhancing the quality of life of disabled people by improving service delivery, by providing more equitable opportunities and by promoting and protecting their human rights. It calls for the full and co-ordinated involvement of all levels of society: community, intermediate and national. It seeks the integration of the interventions of all relevant sectors - educational, health, legislative,


social and vocational - and aims at the full representation and empowerment of disabled people. It also aims at promoting such interventions in the general systems of society, as well as adaptations of the physical and psychological environment that will facilitate the social integration and the self-actualisation of disabled people. Its goal is to bring about a change; to develop a system capable of reaching all disabled people in need and to educate and involve governments and the public. CBR should be sustained in each country by using a level of resources that is realistic and maintainable.

At the community level, CBR is seen as a component of an integrated community development programme. It should be based on decisions taken by its members. It will rely as much as possible on the mobilisation of local resources. The family of the disabled person is the most important resource. Its skills and knowledge should be promoted by adequate training and supervision, using a technology closely related to local experience. The community should support the basic necessities of life and help the families who carry out rehabilitation at home. It should further open up all local opportunities for education, functional and vocational training, jobs, etc. The community needs to protect its disabled members to ensure that they are not deprived of their human rights. Disabled community members and their families should be involved in all discussions and decisions regarding services and opportunities provided for them. The community will need to select one or more of its members to undergo training in order to implement the programme. A community structure (committee) should be set up to provide the local management.

At the intermediate level, a network of professional support services should be provided by the government. Its personnel should be involved in the training and technical supervision of community personnel, should provide services and managerial support, and should liaise with referral services.

Referral services are needed to receive those disabled people who need more specialised interventions than the community can provide. The CBR system should seek to draw on the resources available both in the governmental and non-governmental sectors.

At the national level, CBR seeks the involvement of the government in the leading managerial role. This concerns planning, implementing, co-ordinating, and evaluating the CBR system. This should be done in co-operation with the communities, the intermediate level and the non-governmental sector, including organisations of disabled people." ("Prejudice and Dignity", E.Helander, p.8).

Dr Helander now works for the UN Development Programme's Interregional Programme for Disabled People, based in Geneva.

From ICACBRCommunity based rehabilitation (CBR) is a response, in both developed and developing countries, to the need for adequate and appropriate rehabilitation services, to be available

to a greater proportion of the disabled population. Its aims are to rehabilitate and train disabled individuals, as well as to find ways to integrate them into their communities. In CBR, the disabled person, the family, the community, and health professionals collaborate to provide needed services in a non-institutional setting, and in an environment or community where services for disabled persons are seriously limited or totally absent. Its esssential feature is its focus on partnership and community participation. Approaches to the implementation of CBR are many and are determined by a variety of social and demographic factors. Introducing rehabilitation services at a local or community level removes many obstacles to care which are associated with institutions. The difficulty of travel and its expense are eliminated or reduced to a minimum. The individual is not isolated from the community; family members and community volunteers are part of the rehabilitative process. All participants can see what the disabled person has achieved. This can help integrate the person into the community, a community which values the unique contribution which the person is able to make.

In developed countries, the CBR model responds to the shift away from institutional care to home-based care, and to health-care restructuring in light of reduced funding. In the developing world, CBR provides the focus for training a new corps of health and social personnel. In conflict and post-conflict regions, CBR is being implemented to provide essential rehabilitation services to a population ravaged by war.

INTRODUCTION

People with disabilities are estimated to form 7-10% of the population in any country, and around 2% would need some form of rehabilitation services. Yet only 0.01% to 0.02% of the population in developing countries actually get such services. There are presently about 200 million moderately and severely disabled people in developing countries, where disabilities are mostly poverty related. The incidence of disability has always been on the increasing trend, and about 60% of disabilities could have been prevented (WHO Expert Committee, 1981; Murthy, 1992).

In bringing about positive impact on the situation of people with disabilities, at least three approaches have been practiced, namely: Institutional Based Rehabilitation, Extension of Institutional Based Rehabilitation, and Community Based Rehabilitation (CBR). While the rehabilitation gap cannot be closed in any quick or easy way, CBR is considered one of the most practical and efficient rehabilitation approaches (Handojo, 1991; Helander, 1988).

CBR is defined as "a system which envisages using existing resources of manpower and material within the community to promote integration of disabled people in all spheres of life and activity" (Thomas, 1990, page 3). "The Community-Based Rehabilitation

strategy is an effort to design a system for change---for improving service delivery in order to reach all in need, for providing more equal opportunities and for promoting and protecting the human rights of disabled people" (Helander, 1993, page 5).

In 1976, member countries of the World Health Organization (WHO) decided to include rehabilitation in the goal "Health for all by the year 2000" (Helander, 1980). Recognizing that people with disabilities in developing countries have a large need for rehabilitation and have very limited access to rehabilitation facilities, WHO has developed community-based rehabilitation program designed to integrate with programs for primary health care. Since then CBR as a tool for government and non-government intervention has been expanding very rapidly all over the world. People with disabilities, their families, and their communities have benefited from CBR. CBR practices in countries with vast differences in race, culture, language, socio-economic-political development, and religious belief have provided a collection of diversified and rich experiences.

In 1979, a manual published by WHO proposed a simple demystified set of technologies for the community and family levels (Helander, 1980). In 1989, a revised version of the manual entitled 'Training in the community for people with disabilities" appeared. There has been much practice and discussion about the concept, objective, methodology research of CBR during these years.

In 1992, a discussion forum was hosted by the United Nations Development Program in Geneva. Helander presented his latest definition of CBR at the Geneva forum. "Community- based rehabilitation is a strategy for improving service delivery, for providing more equitable opportunities and for promoting and protecting the human rights of disabled people" (UNDP, 1993, page 1). It calls for the full and co-ordinated involvement of all levels of society.

In 1993, "Prejudice and Dignity-An Introduction to Community-Based Rehabilitation" was published by Helander (1993), UNDP. It discussed and analysed background, definitions, principles, technology management, system of CBR, reviewed evaluation techniques, and described a plan of action for CBR in the future.

Since the early days of CBR experimentation, the Asia and Pacific Region has been at the forefront in the field of CBR and made significant contributions to the world. The Asia and Pacific Region with over 50 countries and territories, is the home of 57% of the world's population. Most people with disabilities live in the region's developing countries. Not surprisingly, CBR has been looked upon as a solution to achieving practical and efficient rehabilitation approaches.

In order to further promote the development of CBR in coordination with the social and economic development of this region, there is a need to develop a set of comprehensive guidelines for CBR evaluation. Such guidelines should be scientific, practical, easy to use, and should cover various aspects and stages of the practice.

In 1993, during "the Seoul Conference on Rehabilitation Manpower Development and Networking in the Asia and Pacific Decade of Disabled Persons 1993-2002", the Rehabilitation Action Network for Asia and the Pacific Executive Committee submitted a proposal entitled "The Research Project-Guidelines for CBR Evaluation", and received finding support from the Hong Kong based RI Regional Secretariat for Asia and the Pacific and the Japan based Regional NGO Network for the Asia and Pacific Decade of Disabled Person 1993-2002.

In December 1993 a research team was established on the design and implementation of the project, which consisted of members from Malaysia, Hong Kong, Korea, Singapore, Japan, Indonesia and China. The members of the research project have extensive involvement in CBR and rehabilitation services. A plan of the research project was drafted, which consisted of several aspects including the sponsor, research member, aim, objectives, methodology, outcome and procedure. In order to invite more suggestions and comments, copies of the plan had been sent to people who have been involved in CBR or rehabilitation services from inside and outside the region. Collection and analysis of literature relating to subject is an essential and basic work in any research project. The researchers have paid special attention to the replenish of literature, so as to have a better grasp of the latest reference materials. So far, more than 30 pieces of information on the evaluation of CBR have been collected and reviewed. In August 1994, ILO, UNESCO and WHO drafted a joint position paper "Community-Based Rehabilitation For And With Disabilities" (ILO et al., 1994). It made a statement on the concept, objective, methods, sustainable, interagency collaboration on CBR. The present guidelines for evaluation of CBR has taken note of the views from the joint position paper.

The researchers consulted with members of the research team, as well as experts who are from WHO, UNICEF, UNDP, RI, RNN, etc. In September 1995, a seminar on OMAR (OMAR IN REHABILITATION. A Guide on Operations Monitoring and Analysis of Results (draft for field testing)) was held in Wuhan, China. It provided a good opportunity for the researchers to get access to updated knowledge. A useful exchange of ideas on evaluation of CBR was carried with Ture Jonsson, Senior Program Officer, UNDP Inter-Regional Program for Disabled People (IRPDPP) (Jonsson, 1994).

This research project has been launched to meet a specific need of CBR development, and has practical significance. Due to the support received from various sectors and efforts of the members of the project team, the first working edition of the Guidelines was able to be published to greet the mid-point review of the Asia and the Pacific Decade of Disabled Persons, 1993-2002. The researchers wish that the Guidelines would be a useful reference tool for evaluation in CBR practice. Any shortcomings or errors found in the Guidelines will be the sole responsibility of the researchers.

* Queen's University is recognized as a major player in the wider international community's commitment to the full citizenship of persons with disabilities. This has been achieved through its involvement in global collaborative research, educational initiatives and policy development that strengthen the quality and scope of health and social services for and with persons with disabilities. Queen's

based organizations and departments involved in this development process has included primarily the International Centre for the Advancement of Community Based Rehabilitation (ICACBR) and the School of Rehabilitation Therapy as well as faculty from Policy Studies, Psychology, Engineering and Education. ICACBR was established at Queen's University in May 1991 as one of six Centres of Excellence funded by the Canadian International Development Agency (CIDA) with a mandate to advance the development of community based rehabilitation (CBR) internationally. Closely affiliated with the School of Rehabilitation Therapy, the Centre draws from the vast resources offered by the University, Kingston and Canadian community. It is comprised of a network of clinicians, researchers, educators, persons with disabilities, and policy analysts. Mutual respect, cultural understanding and creativity are key to its success. Its work is focused on transferring skills, building local expertise, and creating an environment for persons with disabilities to engage in the development of sustainable, integrated and accessible health/social services. The aim is to maximize community participation and citizenship of persons with disabilities and minimize the inappropriate use of resources.

Queen's has spearheaded a number of international CBR and disability initiatives in over 15 countries in the Asia Pacific Region, Central and South America, Central and Eastern Europe (CEE) and Africa including countries in conflict, post-conflict and democratic transition. Queen's has worked extensively with local governments, education/research institutions (universities, colleges and training institutions), NGOs and consumer organizations and international agencies such as WHO/PAHO, ILO, UNDP, ESCAP, World Bank, DPI, CARE, and Handicap International (HI). Queen's has also been Canada's implementing agency in a tripartite international CBR program with Israel in Guatemala and with Japan in Repulika Srpska, Bosnia-Herzegovina (BiH).

Since the mid-80s Queen's has contributed to the reorientation of health and social sector towards community based approaches to the delivery of rehabilitation and disability services. Areas of activity include curriculum development, education and training of rehabilitation practitioners, community workers and persons with disabilities, the development of appropriate technology, research, strategic planning, design and management of CBR services. Central to its work is building partnerships between educators, professionals and persons with disabilities that is empowering for all. A few examples of Queen's activities internationally are as follows.

In Russia, the first program of occupational therapy for nurses at Volgograd Medical College and Moscow Medical College was established and curriculum on OT to Department of Psychology at Moscow State Social University (MSSU) was introduced. Over 15 nurses graduate annually from the OT college program and over 200 students at MSSU complete a course on OT as a part of the education. Persons with disabilities teach the core course on disability issues in the college and lecture at MSSU.

ICACBR has developed extensive experience working with vulnerable populations in the development of CBR as a viable strategy for the provision of needed rehabilitation services in areas of conflict and post-conflict including BiH and Kosova, with victims of landmines in the Balkans and Central America and refugees in the camps of Macedonia and Albania. It was a major player in the post-war health and social reconstruction strategies in the Balkans working closely with the World Bank and the WHO. ICACBR was the lead technical agency in the World Bank/ Federation of BiH War Victims Rehabilitation Project that created a national network of over 40 accessible CBR centres as the core of this country's national rehabilitation system (1996 to 2001). It contributed to the introduction of independent living programs, peer counseling and the strengthening of the NGO sector to advocate for progressive disability policies and social justice for all persons with disabilities including victims of landmines. Extensive training was provided for of over 500 health and rehabilitation practitioners on current approaches to community practice, environmental awareness and management, the development and training of a network of 50 persons with disabilities trained in peer counselling and small business development and legislation focussed on a community approach to rehabilitation. Queen's, in partnership with HI, was instrumental in establishing the first Physical Therapy School at the University of Prishtina, Kosova (2000-2004) and the education of 100 CBR workers employed by a HANDIKOS, a local disability NGO to facilitate the integration of persons with disabilities into community life (1999-2001).

Over 50 primary health workers and 20 persons with disabilities in rural Guatemala were trained as CBR workers to make accessible, for the first time, basic rehabilitation for persons with disabilities living in isolated areas (1999-2001). This program has been incorporated into the municipal rural primary health system of Nebaj. Low level mobility devices were designed by graduate student engineers and occupational therapists working with Indian women in Kingston and a rural community in India so that women with disabilities who have no use of their legs could be independently mobile in their home and community (1996-1997). This technology has been translated into different languages and shared internationally to communities faced with similar physical and environmental challenges.

Over 50 research activities and 200 publications and presentations have been conducted by Queen's personnel (1993-2001). Areas of interest have included women with disabilities, attitudes, beliefs and behaviours towards disability, the role of NGOs in developing programs for persons with disabilities, CBR evaluation, and the critical dimensions and conceptualization of CBR. It has shared this knowledge and experience internationally to gain a better understanding of the core dimensions of CBR and the strategies for effecting social change. Lessons learned are guiding Queen's and other agencies in the further development and refining of development programs and curriculum in CBR and disability. At least 15 graduate students from China, Brazil, India,

Japan, United States and other countries have completed Master's training in CBR and rehabilitation science in the School of Rehabilitation Therapy. Over 100 internationals have conducted lectures in which thousands of Queen's students have benefited from their knowledge and experience over the years.

Over 50 Canadians have conducted graduate level research nationally and internationally in CBR and 10 undergraduate student have completed placements in international settings (1992-2001). Queen's has participated in the advancement of Canadian foreign policy as well as working with WHO and ESCAP as consultants and advisors for the classification of disability, setting priority directions for the development of CBR, assistance to landmine victims, peace building and children's rights. Further, Queen's has recently established a formal partnership with a First Nations and Inuit groups in northern Ontario to work with government and local services to develop a CBR worker program. This has been a direct result of its international experience.

The outcome of extensive Canadian and international experience in the field of disability and rehabilitation services reform has been a heightened national and international profile and significant return on investment in international initiatives. Queen's is recognized as a university with a strong focus on internationalization and the education of professionals in international development in the field of CBR. Queen's has enhanced its capacity to inform students, faculty, managers and policy makers on the opportunities, challenges and accomplishments of other countries in the advancement of disability and rehabilitation programs and policies. Over 200 Queen's faculty, professionals for the Kingston and Canadian rehabilitation and disability community have participated in these activities. Working internationally has resulted in Queen's expanding and diversifying its portfolio of education and research including the establishment of CBR in the undergraduate curriculum for rehabilitation students, as a Masters and PhD program offered by the School of Rehabilitation Therapy. ICACBR has also developed curriculum on international development and disability for High Schools in the Kingston region. Of particular note, Queen's is more effective in managing and designing more technically relevant/responsive international development programs and conducting a more strategic approach to meeting the needs of a diverse set of stakeholders with demonstrable results. Unquestionably, the ability to function effectively and credibly as an international implementing agency active in all sectors - service, education, research and policy - has been made possible by the access to the diverse resources and network that a university setting offers its international partners.

Authors:Lorna Jean Edmonds and Malcolm Peat, ICACBR, Queens University, Kingston, ON.

Integrating Community-Based Rehabilitation into primary health care programs• Improving access to the training of personnel who provide prosthetic and orthotic

devices• Promoting the economic re-integration of survivors into their communities.

In order to respond to the individual needs of each country, all project activities are determined through an annual planning meeting held in each country, at which people from government ministries (health, education, labor and social security), the NGO community, and people with disabilities are represented. This article focuses on the training aspect of the CBR component, the central theme of the project and the only component in which all three countries are actively involved

The United Nations has determined that one of the most effective means of improving the lives of people with disabilities is by creating and supporting CBR. CBR is a community-based initiative in which all facets of a person’s life, such as health, physical and emotional needs, educational programs, employment needs, and recreational and social lives are considered.

The term "CBR" is used widely throughout the world yet understood by very few. The concept of CBR includes: a thorough knowledge of how communities operate, an understanding of the range of human needs, an acknowledgement of the impact of a disability on the family and the individual, a belief in an individual’s right to determine his/her own future without society-induced barriers, a basic understanding of impairments and treatments, and the skills to transfer this knowledge to others.

Goal

The program’s goal is to increase the number of people who are trained to teach other people about CBR.

Objectives

The TOT objectives are:

1. To teach the knowledge, skills and attitudes necessary to train others about CBR

2. To present the theory and teaching skills behind the training of adults in community environments

Strategies and Resources

In keeping with the current best practices of adult education, all workshop participants are expected to take an active role in the learning process and ultimately assume responsibility for their own education. Trainers (from Canada, Mexico and the host country) act as facilitators, guiding the participants through a carefully planned curriculum of activities designed to build on their own skills and knowledge. The TOT training is completed in three separate workshops (levels 1, 2 and 3), each held a few months apart. An integral part of the training directs the participants to plan, design, present and evaluate CBR workshops in their home communities, involving the community and people with disabilities. These participant-lead workshops are held in the periods between the TOT workshops, so that participants may plan and review their work with their fellow TOT colleagues.

The prime resource for the TOT workshops is each participant, who brings his/her own training, expertise, skills and attitudes to the workshops. Participants are

expected to use the resources in their own communities, such as landmine survivors, people with disabilities, their organizations and other related community groups. The facilitators act as resource people to encourage each participant to maximize his/her own capabilities. Queen’s University has prepared detailed manuals for each level of the training.

Discussion

At the time this article was written, the TOT process was still in progress, and a full evaluation of its impact remained to be completed. Early impressions and feedback from the participants have yielded some interesting findings. Participants have been consistently encouraged and motivated by the interactive approach of the workshops. It is a style of teaching to which most people in Central America are not accustomed, and yet they readily accommodate the approach with enthusiasm and typical cultural exuberance. Participants are less comfortable with the sense of openness and self-criticism that is encouraged during the workshops. Perhaps this is to be expected in a society recently torn apart through internecine conflicts and one in which conformity is expected. Nonetheless, as future trainers of trainers, they are encouraged to develop skills of self-evaluation and critical thinking.

Since the beginning of the CALMS project, dealing with the predominantly medical focus of the activities has been a challenge. The concept of CBR has always been to promote the rehabilitation of disabled people in an integrated and holistic manner, in which the individual is viewed as a person, not just a patient, mother, client, worker or student. Because the CALMS project is administered in the countries by the various ministries of health, it is difficult for the integrated approach to CBR to take hold. The participants and facilitators are predominantly from a health background, which promotes the image of disability as a purely medical problem, contrary to the predominant view of disabled activists who view disability as a social issue. On the other hand, the health/medical systems are the best-developed services within each country and are often linked to other ministries (education, labor, etc.), therefore allowing the project easy access to people in the remote regions most affected by landmines.

Another early finding is that the participants arriving at the workshops are stressed and tired, and they tend to belong to an already very busy and active segment of their communities. Participating in the TOT workshops places an additional demand upon their already limited time and resources. This raises the question of the long-term sustainability of the TOT approach: how can a country with limited capacity find the resources to support and promote CBR activities and CBR trainers? With the exception of Honduras’ Functional Therapy graduates, none of the TOT participants will graduate from the TOT workshops with the exclusive responsibility of being a CBR trainer of trainers. These issues are currently being discussed with the national ministries of health and education.

Rehabilitation International is a federation of national and international organizations and agencies. It develops and promotes initiatives to protect the rights of people with disabilities, to improve rehabilitation and other crucial services for disabled people and their families, and to increase international collaboration towards these objectives.

RI is currently composed of about 200 member organizations in 80

nations, in all of the world's regions. Rehabilitation International maintains official relations with the United Nations Economic and Social Council, the World Health Organization (WHO), the International Labor Office (ILO), UNESCO, UNICEF, the Organization of American States, the European Union and the Council of Europe, the UN Economic & Social Council for Asia & the Pacific (UNESCAP), and others.

RI is governed by an annual Assembly representing its member organizations and by an Executive Committee elected every four years by the members. The Secretary General is selected by the Executive Committee.

RI is: an open forum for the exchange of experience and information

on research and practice an advocate for policies and legislation recognizing the rights of

people with disabilities and their families a deliberative body for change of public attitudes to encourage

the equal participation of people with disabilities in education, employment and the cultural and social life of their communities.

In 1999, on the basis of a unanimous call from the RI Governing Assembly, RI revived efforts to establish a UN Convention on the Rights of People with Disabilities. RI then played a major role in the 2000 Disability Sector Summit in China, which together with other international disability organizations, issued "The Beijing Declaration," calling for the development of such a UN Convention.

History Founded in 1922, RI has a long history of accomplishments:

originated the International Symbol of Access, the universal signpost of accessibility for people with physical disabilities

organized the world's first high level conferences on Community-Based Rehabilitation (CBR); social barriers to integration; legislation concerning disability; barrier free design the economics of disability; improving the image of disabled people through mass media; and the social change movement of people with disabilities to assert leadership in this field

created the Charter for the 80's, a statement of global priorities for the prevention of disability and rehabilitation of persons with disabilities, which formed the basis for the UN's Plan of Action for the Decade of Disabled Persons

updated that Charter with a new "Charter for the Third Millennium" launched in London in December 1999 and then formally presented to almost 100 national and international leaders...

Co-sponsored in 1997 the acclaimed International Leadership Forum for Women with Disabilities that attracted 600 participants from 80 countries

Current Activities From 1980 to the present RI has provided practical support to

the disability focal point within UNICEF, including a regular newsletter on childhood disability

works with the UN and other disability organizations to promote implementation of the UN Standard Rules for Equalization of Opportunities for People with Disabilities

actively supports implementation of the ILO Convention on Vocational Rehabilitation and studied for the ILO the impact of new technology on employment of persons with disabilities

publishes comprehensive periodicals and reports on disability issues including the International Rehabilitation Review, and One in Ten.

Produced in 1998 a resource kit and video on applying CBR "best practices" worldwide

is producing, with the World Institute on Disability and other groups, an international online magazine (www.disabilityworld.org) issued every other month in English and Spanish...

administers Commissions of specialists working on the following aspects: education; medical; organization and administration; recreation leisure and physical activities; social; technology and accessibility; work and employment

organizes quadrennial World Congresses and regional conferences. Recent World Congresses were held in 1992 in Nairobi, Kenya, in 1996 in Auckland, New Zealand, and in Rio de Janeiro, Brazil in 2000, the 19th worldwide and the first in Latin America

promotes regional actions through Regional Committees and conferences in Africa, the Arab region, Asia and the Pacific, Europe, Latin America and North America

Recent regional conferences were held in Lebanon in 2001, China in 1998 and Korea in 1997

distributes information regularly in more than 150 countries... organizes international disability film/video festivals and in 1998

developed a catalogue of the best audiovisual materials for public education and training...

holds annual meetings of its Governing Assembly, the representative body where all current members may vote and which defines the organization's policy and program...

is active in the International Working Group on Disability and Development (IWGDD), dedicated to increasing the participation

of people with disabilities in development assistance programs at every level. The IWGDD is placing special attention on inclusive education.

Participates in the International Disability Alliance (IDA), a coalition of the world's largest international disability organizations.

For information, contact: Rehabilitation International Secretariat 25 East 21st Street New York, NY 10010, USA Telephone: (212) 420-1500 / Fax: (212) 505-0871 E-mail:rehabintl@rehab-international.

The Arab Region DocumentToward a Comprehensive and integratedConvention on Protecting and promotingThe Rights of Disabled Persons

The participants from the Arab countries in the workshop (The rights of the Disabled in the Arab World) confirm the principles of the Universal Declaration for Human Rights and the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (United Nation, 1993). We also refer to the appointment of the UN special rapporteur for the disabled in 1994, and the General Assembly of Rehabilitation International asking member countries to support UN convention on the rights of disabled persons in September 1999. Emphasizing on the recommendation of the world Summit of Non Governmental Organizations in Beijing, which calls for setting an International convention for the right of the Disabled.

Taking into account, the approval of the UN General Assembly on the resolution (56/168), which demands the establishment of AD-HOC committee to study the proposed suggestion on establishing an International Convention for the right of the disabled. Thanking the Mexican government on its initiative to host the meeting of the international experts to discuss the convention in June 2002. And also welcomes the recommendation of the first Ad-hoc committee to the UN General Assembly (A/57/357).

The participants realize that nearly 10% of the population in the Arab World (which is estimated to be 25 million) are disabled person or suffer from some kind of disability, therefore we are: -

FIRST: - Asking for a comprehensive and integrated International Convention on the right of disabled persons.

SECOND: - Asking for the participation of governments and NGO's from the Arab region in the second ad-hoc committee which will be held in New York 16-27, June,


2003.THIRD: - Asking the Arab governments to encourage the participation of the disabled and the experts working with NGOs to be part of this meeting.FOURTH: - The following subject should be taken into account in the suggested convention:1) Setting up legislations and special policies aiming at guaranteeing the right of the disabled and equal opportunities, and activating the current legislation and it's applications in order to provide the best services for the disabled.2) Eliminating all kinds of discrimination against the disabled by counting on the principle of equality and promoting self reliance of the disabled, their independence and their full participation in all fields of life.

3) Encouraging the governments in the Arab region to participate the disabled in contributing to national strategies and policies concerning disability.4) Encouraging the governments to participate in creating a barrier free environment with less obstacles for the disabled by which they can live, move and have easy access to various means of communication.5) The governments in the region should recognize the disabled need to adequate education, which improve their abilities and their development, by providing adequate and inclusive environment which contains various aids, workers and rehabilitation materials.6) Encouraging the participating countries to improve medical, therapeutic, rehabilitation, healthcare and health services for the disabled people without any obligation by the disabled or his family.

7) Granting the disabled the right to have access to all kind and means of technical aids.8) Recognizing the right for the disabled to choose their suitable jobs according to their disability with the right training and rehabilitation.9) Finding ways to facilitate the disabled integration into the society's culture such as sport, arts, religion and entertainment.10) Giving attention to the family social awareness and family guidance aiming at changing the prevailing negative concept of disability in which change the societal attitude and the use of media to make this change.11) Ensuring that the programs of eradicating poverty should be aimed at the disabled due to the fact that they always amount the poorest of the poor.

12) Preparing and implementing special research projects in various relevant fields of disability and establishing a database for the disabled community.

We all hope that an International Convention on the right of the disabled will ensure that the disabled gets their full rights in life.

KINGDOM OF BAHRAIN8-9 MARCH 2003

INTRODUCTION

We are all physically disabled (1) at some time in our lives. A child, a person with a broken leg, a parent with a pram, an elderly person, etc. are all disabled in one way or another. Those who remain healthy and able-bodied all their lives are few. As far as the built-up environment is concerned, it is important that it should be barrier-free and adapted to fulfill the needs of all people equally. As a matter of fact, the needs of the disabled coincide with the needs of the majority, and all people are at ease with them. As such, planning for the majority implies planning for people with varying abilities and disabilities.

PURPOSE

This publication is an attempt to provide for the first time in Lebanon a design manual on accessibility for the disabled. It is a design guidebook made for the purpose of providing architects and designers with the basic information and data necessary for a barrier- free environment. Its intent is to establish standards and recommendations that will not only influence the development and reconstruction of the BCD but assume national importance as well. The manual is expected to be a stimulus that will lead, in the long run, to the establishment of national building and planning legislation covering access for disabled people.

APPLICATION

The manual does not cover all the requirements of disabled people in detail. It is a straightforward guide expected to be the first in a series of publications having the same theme. Most of the recommended measures have been tested in developed countries, and while some have proven to be effective, the outcome of others is still unknown. To determine the reliability and efficacy of these measures for Lebanon, it is important to conduct experimental trials of all provisions. This will be of great help in determining the positive and negative aspects of each measure. Practical advice from legal, professional and academic institutions as well as individuals with disabilities is also of the utmost importance in shaping the final form of an accessibility code which can be applied on a national level, as an integral part of the Lebanese building law.

THE BCD - A CASE-STUDY

Since the BCD is a pilot project in the reconstruction process of Lebanon, implementing accessibility requirements for the disabled will help to make the BCD a case-study or a demonstration project on a national level. This will include the design of the traffic infrastructure and new buildings plus the renovation of the existing infrastructure and buildings.

AIM

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The social aim of this study is to integrate disabled people into society in order for them to take an active part in society and lead a normal life. To be active, a disabled person should be able to commute between home, work and other destinations. The technical aim of the manual is to provide a barrier-free environment for the independence, convenience and safety of all people with disabilities.

TARGET GROUP

The target group is composed of five major categories:

(a) Wheelchair users(b) People with limited walking abilities(c) The sightless(d) The partially sighted(e) The hearing impaired

Other categories that may benefit to some extent from the proposed measures include the mentally disabled, people susceptible to physical fits, people with extreme physical proportions, and people with functional disabilities of the arm or hand.

As for the composition and size of the target group, no dependable statistics currently exist to define the extent of disability in Lebanese society. However, taking into consideration the duration of the war, one can deduce that the disabled form a significant percentage of the population. A good database on disability in Lebanon is essential for any future development in this field.

CONTENT

The manual deals with the technical considerations and design provisions or measures to be taken into account in the planning of the built-up environment. This includes issues related to the design of several complementary domains: open spaces and recreational areas, local roads and pathways, the immediate vicinity of buildings, building entrances and the interiors of buildings. For the purposes of this manual, all information is divided into five sections:

I. URBAN DESIGN CONSIDERATIONSII. ARCHITECTURAL DESIGN CONSIDERATIONSIII. BUILDING TYPESIV. IMPLEMENTATION CHECKLISTSV. APPENDICES

I. URBAN DESIGN CONSIDERATIONS

This section deals with the design requirements of open spaces, recreational areas and pedestrian routes. It introduces solutions to the principal problems in the design of an

accessible outdoor environment.

It is subdivided into seven chapters:

1. OBSTRUCTIONS2. SIGNAGE3. STREET FURNITURE4. PATHWAYS5. CURB RAMPS6. PEDESTRIAN CROSSINGS7. PARKING

II. ARCHITECTURAL DESIGN CONSIDERATIONS

This section deals with the design requirements of vertical and horizontal access in both new and existing constructions. It is subdivided into 10 chapters:

1. RAMPS2. ELEVATORS3. PLATFORM LIFTS4. STAIRS5. RAILINGS AND HANDRAILS6. ENTRANCES7. VESTIBULES8. DOORS9. CORRIDORS10. REST ROOMS

III. BUILDING TYPES

This section deals briefly with the accessibility requirements of selected building types. Special buildings for people with disabilities, such as health and residential facilities and schools, do not fall within the scope of this section. To establish building and planning legislation regarding access for disabled people, this section needs to be thoroughly developed by local authorities, based on the size of the target group, a classification of the various building types and a study of the specific needs of each district.

IV. IMPLEMENTATION CHECKLISTS

This section can be used by both designers and inspectors to identify and assess physical barriers in the built-up environment, for both new and existing constructions. The checklists are arranged according to the categories listed in sections I and II. Questions on almost all problem areas are asked, and possible solutions are offered.

V. APPENDICES

1. TROUBLESHOOTING2. ANTHROPOMETRICS3. COMPARATIVE TABLES4. HEIGHT LIMITS

CHAPTER ORGANIZATION

Each chapter is composed of four parts:

1) Problem identification

This part defines problems encountered by the disabled in the built-up environment owing to the absence or improper application of a certain measure or provision.

2) Planning principle

This part defines the target group, the general goal and the need for a certain measure.

3) Design considerations

This part deals with the technical and architectural aspects of implementing certain measures with regard to general and particular application characteristics, criteria, minimum dimensions and measurements, materials, etc.

4) Existing constructions

This part defines the problems encountered in existing constructions which hinder the implementation of a certain measure. Accordingly, alternative solutions and modifications are suggested.

REFERENCES

The information provided is based on the accessibility codes and relevant knowledge available in various countries. A comparative study of the available sources was conducted regarding each measure. The information was then synthesized and organized according to the needs of the target group. (See the list of references at the end of the book).

DIMENSIONAL DATA

Dimensional data are given in metric units. The graphic illustrations show only the minimum allowable dimensions. Where appropriate, the maximum or approximate

dimension or an allowable range is given.

Notes:(1) It should be noted that a handicap is not a synonym for disability. A disability refers to a physical, sensory or mental limitation that interferes with a person's ability to move, see, hear or learn; a handicap refers to a condition or barrier imposed by the environment, society or oneself. As such, physical obstructions of the built-up environment constitute a handicap to a disabled person. For example, a stairway is a handicap to a wheelchair user. On the other hand, feeling different and inferior to other people constitutes a handicap imposed by oneself


1. OBSTRUCTIONS

1. PROBLEM IDENTIFICATION

Obstacles and protruding elements in the path of travel.

Low overhanging signs.

Lack of warning signs around obstructions.

2. PLANNING PRINCIPLE

To design a barrier-free path for the safety and independence of disabled people, especially the sightless.

3. DESIGN CONSIDERATIONS

3.1 General

Obstructions include street furniture, traffic signs, direction signs, street plans, bollards, plants, trees, shop awnings and advertising signs, etc.

Obstructions should be placed outside the path of travel wherever possible.

Obstructions in the pathway should be easy to detect, and if possible, should be placed along one continuous line.

Protruding elements should be avoided.

The minimum width of a clear unobstructed path should be 0.90 m.

3.2 Obstructions on the pathway surface

Obstructions on the pathway surface should have one of the following design features in order to be detected by the cane of a sightless person:

(a) A straight shape rising from the pathway surface (fig. 1).

(b) A 0.10 m raised platform (fig. 2).

(c) Tactile warning markings on the ground around the obstruction. The warning markings should extend over a width of

Fig. 1

Fig. 2

Fig. 3

at least 0.60 m outside the projected area at the base of the obstacle (fig. 3).

3.3 Overhanging obstructions

Overhanging signs in accessible pathways should be mounted at a minimum clear height of 2.00m to allow a sightless person to pass safely (fig. 4).

Overhanging vegetation should be clipped to a minimum clear height of 2.00 m (fig. 5).

Undetectable obstacles mounted lower than 2.00 m may project a maximum distance of 0.10m into the pathway. Otherwise they should be recessed or covered (fig. 6).

3.4 Fixed poles

Fixed poles should have contrasting durable colour marking strips of at least 0.30 m in length, placed with the centre line at a height between 1.40 m and 1.60 m, to warn pedestrians with limited vision (fig. 1).

3.5 Garbage bins

Garbage bins attached to lampposts should not face the line of pedestrian flow so as to minimize collisions and should be painted in a contrasting colour so that people with limited vision may easily identify them (fig. 7).

3.6 Spaces below ramps and stairs

Spaces below ramps and stairs should be blocked out completely by protective rails or raised curbs or marked with a tactile surface (fig. 8).

3.7 Bicycle stands

Bicycle stands should be located on a raised platform.

3.8 Wires

Stabilizing wires and wire netting should be painted in a

Fig. 4

Fig. 5

Fig. 6

contrasting colour or blocked out. 3.9 Bollards (1) (fig. 9)

Bollards should be painted in a contrasting colour or in coloured stripes.

The distance between guiding posts should be around 1.20 m.

3.10 Roadworks

Excavations and roadworks form temporary obstructions within the route of travel. They should be protected by easily detected continuous barriers, scaffolding, and fences for safety reasons.

Barriers should be identified by stripped colour markings and should be lit at night, to guide people with limited vision.

The barrier height should be between 0.75 m and and 0.95 m. The distance between the bottom of the barrier and the pathway surface should not exceed 0.10 m.

4. EXISTING CONSTRUCTIONS

Existing obstructions within the path of travel should be redesigned to conform to all the above requirements

Notes:(1) Bollards or guard posts are placed to keep out undesired motor traffic from pedestrian areas or to indicate a non parking area.

Fig. 7

Fig 8.


2. SIGNAGE


Orientation difficulties resulting from illegible directional signs, street names and numbering and/or the lack of them.

Pedestrian accidents due to badly positioned signs.

Hazards due to lack of warning and traffic signals.

Non-identification of access routes and accessible facilities.


To facilitate orientation mainly for the disabled.


3.1 General

Signage include direction signs, signs of locality, street names and numbering, information signs, etc.

All types of signs should be visible, clear, simple, easy to read and understand, and properly lit at night.

In general, signs should not be placed behind glass because of possible reflection.

Signage placed on the pedestrian path of travel are considered obstructions; thus, they should be detectable (see Obstructions).

3.2 International symbol of accessibility

Accessible spaces and facilities should be identified by the international symbol of accessiblity (fig. 1).

The symbol is composed of a wheelchair figure with either a square background or a square border (fig. 2).

Contrasting colours should be used to differentiate the figure from the background. The commonly employed colours are white for the figure and blue for the background.

The wheelchair figure should always be seen from drawn

Fig. 1

Fig. 2

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facing right.

For completely accessible buildings, it is enough to have one explanatory sign at the entrance.

3.3 Direction signs

Graphic or written directions should be used to indicate clearly the type and location of the available facility (fig. 3).

Directional signs need not be excessive in number, but they should be placed at main entrances and doors and in places where changes in direction or level occur.

3.4 Street names

Fixed signs indicating street names should be placed at a maximum height of 2.50 m (fig. 4).

3.5 House numbers

Fixed signs indicating house numbers should be placed at a maximum height of 2.00 m (fig. 4).

3.6 Maps and information panels

Maps and information panels at building entrances, along roads, and on public buildings should be placed at a height between 0.90 m and 1.80 m (fig. 5).

3.7 Installation

Signs can be wall-mounted, suspended or pole-mounted.

(a) Wall-Mounted signs:

Wall-mounted signs, such as those indicating room numbers, should be placed with the centre line at a height between 1.40 m and 1.60m from the finished floor level.

(b) Overhanging signs:

Overhanging signs should allow a minimum clearance of 2.00 m

Fig. 3

Fig. 4

(see Obstructions).

(c)Pole-Mounted signs:

(see Obstructions)

3.8 Shape of signboards

Information signboards should be rectangular.

Warning signboards should be triangular.

Interdictory signboards should be circular.

3.9 Colour

The colour of signs should contrast with the surrounding surface so as to be clearly distinguishable.

The commonly used colours are: white, black, yellow, red, blue and green.

The colour combinations red/green and yellow/blue should not be used in order to avoid confusing colour- blind persons.

3.10 Surface

The sign surface should be processed to prevent glare.

Engraved texts should be avoided unless they are coloured. Relief prints are advisable.

Key plans, orientation signs and push buttons in lifts must have a text in Braille or in relief. (1)

3.11 Lettering

The size of letters should be in proportion to the reading distance (fig. 6).

Character width-to-height ratio should be between 3:5 and 1:1 and the character stroke width-to-height ratio should be between 1:5 and 1:10 (fig. 7).

Fig. 5

Fig. 6



The letters and signs should preferably be raised at least 1 mm from the background, to enable sightless people to read the information using the tips of their fingers.

The smallest letter type should not be less than 15 mm.

Normal spacing between words and letters should be used.


The international symbol of accessibility should be added to mark accessible spaces and facilities.

Directional signs should be added to indicate clearly the location and function of accessible spaces and facilities.

Signs that do not comply with the above design requirements should be modified or replaced.

Notes:

(1) Not all sightless persons are familiar with Braille.

Fig. 7


3. STREET FURNITURE


Lack of or improper design of street furniture.

Obstructed pathways.

Inaccessible street facilities.


To design accessible amenities convenient to all people, without obstructing the free passage of pedestrians along travel routes.


3.1 General

Street furniture includes bus stops, benches, mail boxes, lampposts, signboards, telephone booths, public toilets, newspaper kiosks, planting tubs, garbage bins, etc.

3.2 Location (1)

Street furniture should be located so as to allow for the free passage of all people without creating hazards.

Textural changes in the footpath surface help sightless people to identify the location of public amenities (see Obstructions).

3.3 Resting facilities

Level rest areas with seats are helpful for all pedestrians, especially for those with mobility problems.

Resting facilities should be placed outside the main circulation path in public parks, recreational places, pathway crossings, in front of accessible entrances and exits and wherever necessary.

Resting facilities should be provided at regular intervals between 100.00 m and 200.00 m (2) (fig. 1).

Some seating accommodations should be placed close to public toilets, telephones, etc.

Fig. 1

Fig. 2

Fig. 3

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Resting spaces with benches should allow a minimum of 1.20 m of adjoining space for a wheelchair (fig. 2).

Public seats and benches should be approximately 0.45 m above floor level, with backrests at approximately 0.70 m above floor level (fig. 3).

The height of a table should be between 0.75 m and 0.90 m and the minimum depth under the table should be 0.60 m, in order to fit a wheelchair under all sides (fig. 4).

3.4 Public telephone booths (3)

At public telephone booths, one telephone should be accessible to a wheelchair user and another to a person with a hearing impairment.

Telephones for the hearing impaired should be equipped with hearing aid devices and amplifiers. The location of telecommunication devices should be indicated by signs.

A push-button telephone numbering system, with raised letters which can also be read by touch, should be used for the convenience of sightless users and other disabled people. A dial numbering system is not recommended unless the dial tension is reduced so as to require less effort to rotate the dial.

A folding seat should be provided in accessible telephone booths for the convenience of people with mobility problems.

The minimum unobstructed area in front of the telephone counter should be 1.20 m x 0.85 m, allowing either a parallel or a frontal approach (fig. 5).

The coin slot should be mounted at an accessible comfortable height between 0.90 m and 1.20 m.

The telephone cord length should be at least 0.75m.

Accessible public telephones should be marked by appropriate signs.

3.5 Mailboxes

Fig. 4

Fig. 5

Fig. 6

Fig. 7


Mailbox slots should be mounted at an accessible height between 0.90 m and 1.20 m (fig. 6).

3.6 Water Fountains (fig. 7)

Drinking fountain spouts should be located at an approximate height of 0.90 m.

Drinking fountains can have two spouts located at different heights, one convenient to wheelchair users at approximately 0.85 m, and one at approximately 0.95 m for non-disabled people.

3.7 Signs (see Signage; Pedestrian Crossings)

3.8 Garbage bins (see Obstructions)

3.9 Public toilets (see Rest Rooms)

3.10 Ticket vending machines (see Height Limits)


Resting facilities should be rearranged where possible to allow an adjoining space for a wheelchair.

Facilities mounted at a maximum height of 1.40 m are acceptable, while those located at a higher level should be modified.

Notes:

(1) Landscaped strips act as a buffer zone between pedestrian and vehicular zones, and street furniture can be located within these strips.

(2) It might be beneficial to locate rest areas at more frequent intervals on long gradients

(3) Public telephone requirements also include those in hotels, information booths and other public areas.







4. PATHWAYS


Uneven curbs with obstacles and holes.

Inconvenient or dangerous interruptions in the path of travel.

Insufficient width.

Changes in level.


To provide clear, obstruction-free, level and wide pathways for the convenience of all users, especially the sightless and people with mobility problems.


3.1 General

Street pavements, pedestrian passages in open spaces and recreational areas, pedestrian underpasses and overpasses are all considered pathways or ramps.

Pedestrian routes in recreational areas and open spaces should be broken regularly by detectable obstructions such as plants and/or by changing the alignment to discourage bicyclists (see Obstructions).

3.2 Guide strips

The path of travel should be easy to detect by a sightless person using a long white cane. Natural guide lines (1) and guide strips are used to help identify travel routes.

A guide strip is a line means constructed in or on the road surface to facilitate orientation for sightless pedestrians in the following manner:

(a) To replace missing natural guidelines fill gaps of more than 10.00 m in a guide strip (fig.1);

(b) To guide to pedestrian crossings (fig.2) (see Curb Ramps;

Fig. 1

Fig. 2

Fig. 3


Pedestrian Crossings).

Guide strips should be laid in a simple and logical manner and should not be located close to manholes or drains to avoid confusing sightless people.

Guide strips should have a colour which contrasts with the surrounding surface for the benefit of people with sight problems.

The guide strip ridge profile should be parallel to the main direction of movement and should be flush with the top layer of the adjacent road surface so as not to hinder people with mobility problems.

Where travel routes change direction, there should be a gradual change in the direction of the guiding strip (fig. 3).

3.3 Tactile marking

Tactile tiling on the pedestrian route of travel should be placed at the following locations:

(a) On a guide strip where alternative routes exist or at a junction of guide strips (fig. 4).

(b) At a pedestrian crossing (see Curb Ramps; Pedestrian Crossings ).

(c) Around obstructions which are difficult for the sightless to detect (see Obstructions).

A tactile guiding area, preferably of rubber tiles (2) with minimum dimensions of 0.90 m x 0.90 m, should be constructed in a guide strip at cross pathways where the route branches off in several directions (fig.4).

3.4 Curbs

The height of a curb should be between 0.07 m and 0.15m.

Stepped curbs should be avoided, as they are hazardous to all pedestrians, especially in darkness.

Fig. 4

Fig. 5

Fig. 6


3.5 Curb ramps

Curbs should not obstruct the free passage of physically disabled people, mainly wheelchair users (see Curb Ramps).

3.6 Width (fig. 5)

The minimum width of an unobstructed pathway should be 0.90 m.

The minimum width of a two-way wheelchair traffic passage is 1.50 m. The preferable width is 1.80 m.

3.7 Slope

The slope of an accessible path should not exceed 1:20. Pathways with a slope of more than 1:20 should be designed as ramps (see Ramps).

The slope across a path should not exceed 1:50.

3.8 Surface

The surface of an accessible pathway should be smooth, continuous, non-slip and even.

Pathways which are level and even with adjacent surfaces should be given a different texture and colour finish for differentiation.

Intersecting pathways should blend at one common level.

3.9 Gratings (fig. 6)

Gratings can be hazardous to wheelchair users, cane and crutch users, parents with prams and women with high heels.

Manholes, drains and gratings should generally be placed outside the pedestrian pathway.

Gratings should be flush with the pathway surface and should have narrow patterns of not more than 13 mm.

Elongated grating openings should be perpendicular to the

Fig. 7

Fig. 8



pedestrian travel path.

3.10 Guards

For changes in level of more than 13 mm between the pathway and the surrounding surface, guards, upstands or other types of barriers should be used.

Guards with a minimum height of 0.15 m should be used to separate pathways from planting areas, pools and landscape features (fig. 7).

The edges of the pathway should be beveled wherever changes in level between 6 mm and 13 mm exist between the pathway and the surrounding area (fig. 8). 3.11 Landscaping

Plant varieties and locations within the travel route should be chosen with caution.

Thorny and poisonous plants should not be used immediately adjacent to pedestrian paths.

Plants that drop seeds and leaves creating a hazard underfoot should be avoided.

Trees with shallow roots are hazardous as the roots may breakthrough the pathway surface.

3.12 Obstacles and Signs (see Obstructions)


Textured rubber adhesive tiles can be applied to existing pavement to avoid slipping and to warn sightless people.

Existing curbs that obstruct the pedestrian flow should be ramped (see Curb Ramps)

Existing pathways with steps, stairs or steep slopes need not be modified if an alternative accessible route exists.



Notes:

(1) A guiding line is a straight continuous line of detectable natural objects and defined edges (i.e., building frontages, grass verges, raised platforms, continuous railing, curbs, guards, low barriers, etc.).

(2) The acoustic effect of the rubber tiles as compared with the surrounding surface will provide both a tactile and audible warning of the change in direction.


5. CURB RAMPS


Improperly designed transition or no transition at all between the curb and the street at pedestrian crossings and in the vicinity of building entrances.


To overcome changes in level between the pavement and the road surface and also on the pavement itself.


3.1 General

Curb ramps are used wherever there is a difference in level on pedestrian paths or cross paths.

To avoid confusing sightless pedestrians, curb ramps should be positioned out of the usual line of pedestrian flow. The unobstructed width of the pathway should be not less than 0.90 m (see Pathways).

Curb ramps should be located away from places where water accumulates.

3.2 Types (a) Standard curb ramps: Cut back into the pavement with flared sides providing transition in three directions (fig. 1).

(b) Returned curb ramps: (1) Providing slope in one direction. This could be a dangerous measure if the sides are not protected (fig. 2).

(c) Built-up curb ramps: (2) Usually with flared edges (fig. 3).

3.3 Application

At each quadrant of each street intersection (fig. 4).

At each pedestrian crossing, on opposite sides of the street (fig. 4).

Fig. 1

Fig. 2

Fig. 3




At drop-off zones, near building entrances (fig. 5).

Between accessible parking areas and pathways (fig. 6).

3.4 Curb ramps at intersections

At intersections, curb ramps can be installed in any of the following ways:

(a) Directly in the path of travel (fig. 4).

(b) Diagonally across the corner (3) (fig. 7).

(c) Continuously wrapped around the corner (fig. 8).

3.5 Narrow pavement

Where the construction of curb ramps would affect the width of the travel route, the whole pavement should be lowered, at a maximum slope of 1:12, to provide the necessary level transition (fig. 9).

For narrow pavements lowered at a corner, the tactile tiling indicating the location of the pedestrian crossing could be constructed as indicated in figure 10.

3.6 Width

The minimum width of a curb ramp should be 0.90 m, excluding the sloping sides. The recommended width is 1.20 m (4) (fig. 11).

3.7 Slope

The maximum slope of a curb ramp should be 1:12.

The maximum slope of flares should be 1:12.

Level transfer is recommended between the curb ramp and the surface of a pathway. A lip not exceeding 15 mm can be used (fig. 11).

3.8 Guide strips

Fig. 4

Fig. 5

Fig. 6



A guide strip painted in a contrasting colour should be constructed to guide sightless and partially sighted pedestrians to the location of the curb ramp (fig. 4). (see Pathway; Pedestrian Crossings)

3.9 Surface and colour

Curb ramps, including flares, should have a rough texture or ground pattern to make them detectable and slip-resistant.

The surface colour should be distinct and should contrast with the surrounding surfaces to guide pedestrians with limited vision.


The maximum allowable slope for a curb ramp constructed along high pavements should not be more than 1:10. The maximum slope of the flares should also be 1:10.

If existing curb ramps do not comply with the above mentioned requirements, they should be modified.

For narrow pavements more than 0.15 m high, where the construction of curb ramps would obstruct the free passage of pedestrians:

(a) The pavement can be lowered to the road level to obtain the required transition between the pavement and the road surface (fig. 9) (fig.10).

(b) Built-up curb ramps can be constructed if they would not obstruct the required width of the road (fig. 3).

Notes:

(1) Returned curb ramps are unaccepted measures in some countries.

(2) In some countries, such as Canada, built-up curb ramps are accepted only as remedial measures to overcome existing barriers, but not on public streets or pathways.

(3) Corner curb ramps could be dangerous to wheelchair users if the

Fig. 7

Fig. 8

Fig. 9



pedestrian crossing is not wide enough.

(4) The curb ramp construction at pedestrian crossings does not need to cover the whole width of the crossing.

Fig. 10

Fig. 11


6. PEDESTRIAN CROSSINGS


Uneven road surface.

Lack of guide strips.

Lack of warning marking for crossings.

Gratings on the road surface.


To facilitate the safe and independent crossing of disabled people.


3.1 General

Pedestrian crossings should be equipped with traffic control signals.

Low-traffic crossings frequently used by disabled people can be controlled by a pedestrian push-button system.

Constructing traffic islands to reduce the length of the crossing is recommended for the safety of all road users.

3.2 Guide strips (fig. 1)

Guide strips should be constructed to indicate the position of pedestrian crossings for the benefit of sightless pedestrians (see Pathways; Curb Ramps).

A guide strip should lead to pedestrian light poles with push buttons for the benefit of the visually disabled.

3.3 Traffic signals

Pedestrian traffic lights should be provided with clearly audible signals for the benefit of sightless pedestrians.

Acoustic devices (1) should be installed on a pole at the

Fig. 1

Fig. 2




point of origin of crossing and not at the point of destination.

The installation of two adjacent acoustic devices such as bleepers is not recommended in order to avoid disorientation.

The time interval allowed for crossing should be programmed according to the slowest crossing persons.

3.4 Push buttons

Push buttons should be easy to locate and operate and should be placed between 0.90 m and 1.20 m off the ground for the benefit of wheelchair users.

3.5 Traffic islands

The traffic island depth should not be less than 1.50 m.

The width of a traffic island should not be less than 1.50 m.

A coloured tactile marking strip at least 0.60 m wide should mark the beginning and the end of a traffic island, to guide pedestrians with impaired vision to its location.

3.6 Road hump

The road surface at pedestrian crossings can be raised to the same level as the pathway so that wheelchair users do not have to overcome differences in height (2) (fig. 2).

3.7 Surface

The road surface should be firm, well-drained, non-slip and free of construction joints.

3.8 Drains and gratings (see Pathways)

4. EXISTING CONTRUCTIONS

The road surface should be firm, well-drained, non-slip



and free of construction joints.

Notes:

(1) Experience shows that acoustical signals encourage safer crossing behavior among children as well

(2) Road bumps are also helpful in reducing the speed of traffic approaching the intersection.


7. PARKING


Poor parking facilities.

Insufficient width of the parking aisle.

No allocation of parking space for the disabled.


To provide accessible parking facilities as close as possible to the point of destination.


3.1 General

Accessible parking provisions apply to both outdoor and underground facilities.

For multi-storey indoor parking facilities, at least one level should be served by an accessible elevator.

3.2 Number

For parking facilities of less than 50 cars, at least one accessible parking space should be provided in every parking facility.

For parking facilities of a maximum number of 400 spaces, accessible parking spaces should at least be provided in the ratio of 1:50 (one accessible space for every 50 spaces).

For parking facilities of more than 400 spaces, at least 8 accessible parking spaces should be provided plus 1 space for each additional increment of 100 cars over 400.

3.3 Location

For outdoor parking, accessible parking spaces should be located not more than 50 m from accessible building entrances.

For indoor parking, accessible parking spaces should be located right next to accessible elevators, or as close as possible

Fig. 1

Fig. 2

Fig. 3

to exits.

The ends of rows are preferable for vans with lifts for wheelchair users.

3.4 Dimensions

The minimum width of an accessible parking space is 3.60 m. The recommended width is 3.90 m (fig. 1).

An access aisle 1.20 m wide can be located between two ordinary parking spaces (fig. 2).

For indoor parking, the minimum height clearance for vans with hydraulic lifts is 2.40 m.

Where parking spaces are angled, the extra space at the end of a row can be used as a parking aisle for disabled persons (fig. 3). 3.5 Parking curb

If a curb exists, curb ramps should be provided to link accessible parking spaces to accessible pathways (fig. 2).

If no curb exists, a textured surface at least 0.60 m wide is needed to separate the pathway from the vehicular area; otherwise bollards should be used (see Street Furniture). Pre-cast wheelstops can also be used to set apart a passage at least 0.90 m wide (fig. 4) (fig. 5).

3.6 Curbside parking

Curbside parking is dangerous for disabled people unless it is designed as an accessible drop-off area.

3.7 Drop-off areas (fig. 6)

Drop-off areas are beneficial for picking up and dropping off people with physical limitations, parents with children, people carrying loads, etc.

Drop-off zones should be provided at public transport stops such as bus stops, and not more than 30.00 m from accessible building entrances.

Fig. 4

Fig. 5

Fig. 6

The drop-off area should be at least be 3.60 m wide and incorporate an aisle 1.20 m wide to allow for manoeuvring. The length should accommodate at least two cars.

Appropriate curb ramps should be provided to facilitate circulation over paved surfaces.

Where no curb exists to mark the separation between pedestrian and vehicle zones, the installation of a cue is necessary to guide sightless pedestrians:

(a) Bollards may be used (see Street Furniture); (b) A tactile marking strip at least 0.60 m wide can be constructed at the edge of the pathway to warn of the transition to a vehicular area.

A protected shelter or canopy with seating facilities is a recommended design feature at passenger loading zones.

Signs should be installed to identify a drop-off zone and prevent its misuse as a parking space.

3.8 Surface

The surface of a parking facility should beuniform and smooth.

The slope of a parking ramp should not exceed 1:20.

3.9 Signs (fig. 7)

Accessible parking areas should be marked by the international symbol of accessibility. (1)


If the parking area is more than 50.00 m from the building entrance, a vehicular drop-off area within 30.00 m of the entrance should be built or an accessible parking space close to the entrance should be constructed.

If no accessible parking space is available, one of the following measures should be implemented:

Fig. 7

Fig. 8

Fig. 9


(a) Block a peripheral regular stall with bollards to get one accessible parking space (fig. 8).

(b) Block a central regular stall with bollards to get two accessible parking spaces (fig. 9).

(c) Two accessible parking aisles (fig. 9).

For indoor parking spaces with clear height of less than 2.40 m, alternative outdoor provisions for vans carrying disabled people should be provided.

Notes:

(1) An exacting fine can be imposed on non-disabled drivers who park in a parking space designated for the disabled.


1. RAMPS


Inaccessible building entrances due to difference between indoor and outdoor levels.

Inaccessible routes due to differences in level.

Lack of or improper design of ramps.

Very steep and/or long ramps with no resting landings.


To provide ramps wherever stairs obstruct the free passage of pedestrians, mainly wheelchair users and people with mobility problems.


3.1 General

An exterior location is preferred for ramps. Indoor ramps are not recommended because they take up a great deal of space.

Ideally, the entrance to a ramp should be immediately adjacent to the stairs.

3.2 Ramp configuration (1)

Ramps can have one of the following configurations:

(a) Straight run (fig. 1);

(b) 90 turn (fig. 2);

(c) Switch back or 180 turn (fig. 3).

3.3 Width

Width varies according to use, configuration and slope.

The minimum width should be 0.90 m.

Fig. 1

Fig. 2

Fig. 3


3.4 Slope

The maximum recommended slope of ramps is 1:20. Steeper slopes may be allowed in special cases depending on the length to be covered (fig. 4).

Maximum slope Maximum length Maximum rise

1:20 i.e., 9% - -

1:16 i.e., 6% 8 m 0.50 m

1:14 i.e., 7% 5 m 0.35 m

1:12 i.e., 8% 2 m 0.15 m

1:10 i.e., 10% 1.25 m 0.12 m

1:08 i.e., 12% 0.5 m 0.06 m

3.4 Landings

Ramps should be provided with landings for resting, maneuvering and avoiding excessive speed.

Landings should be provided every 10.00 m, at every change of direction and at the top and bottom of every ramp.

The landing should have a minimum length of 1.20 m and a minimum width equal to that of the ramp

3.5 Handrail

A protective handrail at least 0.40 m high must be placed along the full length of ramps.

For ramps more than 3.00 m wide, an intermediate handrail could be installed (fig. 5).

The distance between handrails when both sides are used for gripping should be between 0.90 m and 1.40 m (fig. 5).

3.6 Surface

The ramp surface should be hard and non-slip.

Fig. 4

Fig. 5

Carpets should be avoided. 3.7 Tactile marking

A coloured textural indication at the top and bottom of the ramp should be placed to alert sightless people as to the location of the ramp.

The marking strip width should not be less than 0.60 m.

3.8 Drainage n Adequate drainage should be provided to avoid accumulation of water.

3.9 Obstacles

The same clearance considerations that apply to pathways apply to ramps (see Obstructions).

3.10 Mechanical Ramps

Mechanical ramps can be used in large public buildings but are not recommended for use by persons with physical impairments.

If the ramp is to be used by a wheelchair-confined person, the slope should not exceed 1:12.

The maximum width should be 1.00 m to avoid slipping.


If the topography or structure of the existing building is restrictive, minor variations of gradient are allowed as a function of the ramp length:

Maximum slope Maximum length Maximum rise

1:20 i.e., 9% - -

1:16 i.e., 6% 8 m 0.50 m

1:14 i.e., 7% 5 m 0.35 m

1:12 i.e., 8% 2 m 0.15 m

1:10 i.e., 10% 1.25 m 0.12 m

1:08 i.e., 12% 0.5 m 0.06 m

A non-slip surface finish should be added to slippery ramps.

Notes:

(1) Circular or curved ramps are not recommended


2. ELEVATORS


Inadequate space inside the elevator cab.

High position of switches, buttons and control panel.

Narrow entry doors.

Insufficient opening time interval.


To provide well-dimensioned elevators, that disabled people can use conveniently.


3.1 General

The accessible elevator should serve all floors normally reached by the public.

Key-operated elevators should be used only in private facilities or when an elevator operator is present.

Wide elevator cabs are preferable to long ones.

3.2 Elevator cab

The minimum internal elevator dimensions, allowing for one wheelchair passenger alone, are 1.00 m x 1.30 m (fig. 1).

The door opening should not be less than 0.80 m.

The inside of the elevator should have a handrail on three sides mounted 0.80 to 0.85 m from the floor (fig. 2).

The maximum tolerance for stop precision should be 20 mm.

Fig. 1

Fig. 2

3.3 Control panel

The control panel can be mounted at one of the alternative locations shown in figure 3.

For ease of reach, the control panel should be mounted 0.90 m to 1.20 m from the floor (fig. 2).

Control buttons should be in an accessible location and illuminated. Their diameter should be no smaller than 20 mm.

The numerals on the floor selector buttons should be embossed so as to be easily identifiable by touch.

3.4 Call buttons

For ease of reach, call buttons should be mounted 0.90 m to 1.20 m from the floor (fig. 4). 3.5 Floor identifiers

Tactile numerals should be placed on both sides of the door jambs at an approximate height of 1.50 m to help a lone sightless passenger to identify the floor reached (fig. 4). 3.6 Hall signal

The elevator hall signal should be placed at an approximate height of 1.80 m (fig. 4).

3.7 Door re-opening activators

The door opening interval should be no less than five seconds. Re-opening activators should be provided.

3.8 Audiovisual signals

The elevator should signal arrival at each floor by means of a bell and a light to alert sightless and hearing-impaired passengers simultaneously.

3.9 Floor surface

The floor of the elevator and the area in front of the elevetor on each floor should have a non skid resilient surface or a low-pile fixed carpet.

3.10 Colour

Fig. 3

Fig. 4

The colour of the elevator door should contrast with the surrounding surface so as to be easily distinguishable by persons with visual impairments.


The minimum acceptable size of an existing elevator cab, allowing for a single wheelchair passenger, is 0.95 m x 1.25 m. Smaller cabs should be replaced.

The minimum acceptable width of an existing elevator door opening is 0.75 m.

Call buttons and control panels mounted higher than the recommended height may be left in place if they are within 1.40 m of the floor, this being the maximum reach of a wheelchair user.

Controls mounted higher than 1.40 m should be replaced.

Where there are two identical control panels, only one need be replaced.


3. PLATFORM LIFTS (1)



Changes in level between indoor and outdoor areas.

Changes in level inside a building.

Insufficient space for ramps.


To allow people with mobility problems to have free vertical access between different levels.


3.1 General

Platform lifts are special passenger-elevating devices for the disabled.

Platform lifts can have either a vertical or an inclined movement.

3.2 Vertical movement platform lifts

For maximum level changes of 2.50 m, vertical movement platform lifts may be installed adjacent to the stairs (fig. 1).

For level changes of more than 1.20 m, the lift should be placed in a closed structure with doors at the different accessible levels (fig. 2).

Vertical platform lifts can have a variety of opening for entry and exit (fig. 3).

3.3 Inclined movement platform lifts

Inclined movement platform lifts consist of three elements: a railing, an electric generator and a moving platform or seat.

The operating system of the lift can be either lateral (fig. 4) or suspended (fig. 5).

Inclined movement platform lifts can be installed along the

Fig. 1

Fig. 2

stair wall, as long as they do not obstruct the required width of the exit. The seat or platform can be folded when not in use.

The minimum width of the stairs should be 0.90 m to allow the installation of a lift (fig. 6).

Platform lifts can be installed on all types of stairs including switch-back stairs i.e. those with a rotation angle of 180 (fig. 7) and spiral staircases (fig. 5).

3.4 Lift size

The minimum width of the lift platform should be 0.90 m and the minimum length should be 1.20 m (fig. 3).


Platform lifts can provide access to existing buildings where it would be difficult or unfeasible to install a ramp or an elevator.

Inclined movement platform lifts are usually used to connect one or more floors or to overcome split levels in existing buildings. In buildings that are or would be frequently used by persons with mobility problems, such devices should not be utilized.

Notes:

(1) Platform lifts are also known as stairway lifts or wheelchair lifts.

Fig. 3

Fig. 4

Fig. 5

Fig. 6 Fig. 7


4. STAIRS


Steep staircases.

Poorly designed steps that hinder foot movement.


To provide safe and well-dimensioned staircases for the comfort of all people, especially those with mobility problems.


3.1 General

Differences in level should be illuminated or minimized as much as possible for the comfort of disabled people.

A complementary ramped route, elevator or lift should be provided where there are steps in an otherwise accessible path.

All steps should be uniform.

Circular stairs and stepped landings should be avoided (fig. 1).

Open risers are not recommended.

3.2 Width

The minimum width of a stairway should be 0.90 m for one-way traffic and 1.50 m for two-way traffic.

For indoor stairs, the riser should be between 0.12 m and 0.18 m, and the tread between 0.28 m and 0.35 m.

For outdoor stairs, the maximum riser should be 0.15 m and the minimum tread should be 0.30 m.

3.3 Landing (fig. 2) (fig. 3)

Fig. 1

Fig. 2

Fig. 3

An intermediate landing should be provided when the stairs cover a difference in level of more than 2.50 m.

The length of the landing should be at least 1.20 m extending along the full width of the stairs.

3.4 Nosing (fig. 4)

Sharp edges and overhanging nosing should not be used for treads.

Nosing should be flush or rounded and should not project more than 40 mm.

3.5 Handrails

Handrails must be installed on both sides of the stairs and around the landing for gripping (fig. 3).

For stairs more than 3.00 m wide, one or more intermediate handrails could be provided (fig. 5).

The distance between the handrails when both sides are used for gripping should be between 0.90 m and 1.40 m (fig. 5).

Handrails must extend a distance between 0.30 m and 0.45 m at the top and bottom of the stairs (see Railings and Handrails) (fig. 3).

3.6 Tactile marking (fig. 2) (fig. 3)

A textural marking strip should be placed at the top and bottom of the stairs and at intermediate landings to alert sightless people as to the location of the stairs.

The tactile marking strip should be at least 0.60 m wide and should extend over the full width of the stairs.

To guide users with poor vision, the colour of the strip should contrast with the surrounding surface. 3.7 Surface

Landings, treads and nosing should be slip-resistant and free of projections.

Fig. 4: Recommended nosing types

Fig. 5

Fig. 6



Exterior stairs should be pitched forward at 10 mm per metre to drain surface water.

Slip-resistant stair nosing should be used to fix carpets on stairs.

3.8 Emergency stairs

Emergency stairs should be identified by tactile markings.

3.9 Mechanical stairs (escalators)

Mechanical stairs can be provided with an adaptable tread at least 1.20 m long, if they are to be used by persons confined to wheelchairs (fig. 6).

The edges of escalators should be painted in a contrasting colour for the benefit of poor- sighted users.


When the configuration of the nosing cannot be modified, slip-resistant strip scould be applied to the nosing as an alternative solution (fig. 7).

Slip-resistant strips should be 40 mm wide and should not extent more than 1 mm above the tread surface.

To guide people with sight problems, the colour of the strips should contrast with that of the stairs.

Fig. 7


5. RAILINGS AND HANDRAILS


Unsafe railings.

Hard to grip handrails.

No railings or handrails.


To install adequate railing, wherever needed for the comfort and safety of all people, especially those with mobility problems.


3.1 General

Safety guards or railings should be installed around hazardous areas, stairs, ramps, accessible roofs, mezzanines, galleries, balconies and raised platforms more than 0.40 m high.

On stairways, windows positioned less than 1.00 m from the landing should have railings.

Handrails should be installed to assist disabled persons in bathrooms and toilets (see Rest Rooms).

Spacing between the vertical and horizontal bars of railings should be narrow for the safety of children.

Handrails should not obstruct the path of travel.

3.2 Height (fig. 1) (1)

To facilitate use by ambulant disabled and elderly people, handrails should be mounted between 0.85 m and 0.95 m above the finished floor level.

For the benefit of wheelchair users, a second handrail can be mounted between 0.70 m and 0.75 m from the floor.

Fig. 1

Fig. 2

Fig. 3



To facilitate use by children and short people, a third handrail can be mounted at a height of 0.60 m.

To guide sightless people using a long cane, a rail should be mounted at a height between 0.10 m and 0.15 m (fig. 1); or a low curb should be installed at a height between 50 mm and 75 mm (fig. 2). Low curbs also act as wheelstops.

3.3 Mounting

Railings should be securely attached to the wall or to a supporting structure so as to withstand heavy loads.

Railings should not end abruptly but extend to the floor or blend into the wall so as not to create a hazard for sightless people.

3.4 Form (fig. 3)

Handrails should allow a firm and easy grip.

Circular cross-sections with a diameter of 40 mm are preferable.

Sharp edges should be avoided.

3.5 Handrails for ramps and stairs

Handrails should continue uninterrupted (except for doorways) on both sides and around the landing.

Handrails should extend horizontally for a distance between 0.30 m and 0.45 m at the top and bottom of stairs and ramps, except in places where extensions could obstruct the pedestrian flow (fig.4).

For stairs or ramps more than 3.00 m wide, a continuous intermediate handrail could be provided (see Ramps; Stairs).

3.6 Wall-mounted handrails

Fig. 4

Fig. 5

Fig. 6



The space between the handrail and the wall should be between 40 mm and 50 mm for smooth walls and 60 mm for rough textured walls (fig. 5).

Where handrails are fully recessed into walls, a space of at least 0.15 m should be allowed between the top of the rail and the top of the recess (fig. 6).

3.7 Tactile marking

For emergency exit stairs or ramps, a contrasting tactile strip at least 0.90 m long should be applied to the top and bottom edges of the handrail to alert the partially sighted.

3.8 Colour

A contrasting colour is recommended for handrails to alert people with sight problems.


If existing railings and handrails do not comply with the above requirements, they should be modified or replaced.

Notes:

(1) Measurements are taken from the front of the tread.


6. ENTRANCES


No distinct accessible entrance.

Inadequate space in front of the entrance.


To provide accessible and easy-to-find building entrances.


3.1 General

For new accessible constructions, all main public entrances should be accessible to an ambulant disabled person.

At least one entrance per facility should be accessible to a wheelchair user. In new buildings, the accessible entrance(s) should be the main entrance(s) intended for use by the general public.

Each accessible entrance should be connected by accessible pathways to accessible indoor or outdoor parking areas, local public transit stops and drop-off areas (fig. 1).

In multi-storey buildings, the accessible entrance should permit access to a conveniently located accessible elevator or lift.

3.2 Signs

Accessible entrances should be clearly identified using the international symbol of accessibility including alternate locations of accessible entrances (fig. 2).

No signs are needed if the whole building is accessible.

3.3 Entrance landing

Where the entrance door opens outward, the minimum landing dimensions should comply with figure 3.

Where the entrance door opens inward, the minimum landing

Fig. 1

Fig. 2

dimensions should comply with figure 4.

The surface of the landing should have a slope of 2% for drainage.

The finish material should be non-slippery.

Jute door mats should be avoided. When used however, the upper surface of the mat should be level with the floor finish (fig. 5).

Sheltered landings are preferable.

3.5 Threshold

Thresholds should be removed wherever possible (see Doors).

3.6 Colour

The colour of the entrance door should contrast with the surrounding surface so as to be distinguishable by people with sight problems.

3.7 Entrance vestibules (see Vestibules)

3.8 Entrance doors (see Doors)


Public buildings should have at least one accessible entrance. Wherever possible, this should be the main entrance intended for use by the general public (1) (see Building Types).

If for architectural or technical reasons the main entrance cannot be made accessible, an alternative accessible entrance should be provided. The location of the alternative entrance should be clearly indicated by signs.

To allow for an accessible entrance, one of the following solutions can be adapted:

(a) Ramps, bridges or mechanical lifts be used; (2)

Fig. 3

Fig. 4

Fig. 5







(b) The entrance level might be modified earthfill, or by changing the grade or the landscaping of the surrounding site;

(c) A window or another door at ground might be converted into an accessible entrance.

Notes:

(1) For existing constructions, a service entrance can be used temporarily as an accessible entrance, but it should not be the only accessible entrance.

(2) Mechanical lifts are recommended for buildings where modifications are impossible or unacceptable.


7. VESTIBULES


Narrow doorways and vestibules.


To provide sufficient space to manoeuvre a wheelchair between two sets of doors.


3.1 General

Vestibule entrance doors can be either the sliding type or the swinging type.

For swinging doors, the door mechanism should allow the maximum opening swing.

3.2 Layout

The layout of two swinging doors in a series can be one of the following:

(a) Outward-swinging (fig. 1);

(b) Double-swinging (fig. 2);

(c) Swinging in the same direction (1) (fig. 3);

(d) Inward-swinging (fig. 4).


For narrow vestibules either of the following solutions can be employed:

(a) Replace swinging doors with sliding doors;

(b) Change the direction of the door swing so that both doors can be made to swing outwards, if possible (fig. 5).

(c) Install double-swinging doors for small exit vestibules with a

Fig. 1

Fig. 2

Fig. 3


minimum width of 1.20 m.

(d) Remove the inside or second door.

(e) Enlarge the existing vestibule if possible (2) (fig. 6).

Notes:

(1) Doors swinging in the same direction can be aligned, offset on opposite walls or offset on adjacent walls.

(2) This is recommended for vestibules that also serve as emergency exits because other solutions, such as changing the direction of the door swing, might not solve the problem.

Fig. 4

Fig. 5

Fig. 6



8. DOORS


Narrow doorways.

Doors hinged on the wrong side, thus hindering accessibility.

Doorways with high thresholds.

Heavy and hard-to-operate door leaves.


To facilitate the passage of a wheelchair user through doors.


3.1 General

Accessible doors should be so designed as to permit operation by one person in a single motion with little effort.

Power-operated doors are the best for people with disabilities. The activator system should be automatic or placed within easy reach.

An accessible door should have the following features: a sign, a door handle, an extra pull handle, glazing and a kick plate.

3.2 Door types (a) Automatic doors: - Can be of the sliding or swinging type. In general sliding doors are preferable to swinging doors (fig. 1) (fig. 2).

- Automatic doors are useful when traffic is heavy.

- Automatic doors should have an adequate opening interval. -Guard-rails can be installed near double-swinging doors to indicate a door-opening area and to prevent people from being hit by the door.

(b) Revolving doors: - Revolving doors are not suitable for the use of disabled people or people with prams.

- Wherever there are revolving doors, an adjacent accessible

Fig. 1

Fig. 2

Fig. 3

swinging or sliding door should be provided (fig. 3).

- Auxiliary gates should be provided next turnstiles (fig. 3).

(c) Pivoted doors: - Pivoted doors should swing away from the direction of travel wherever possible.

- Pivoted doors in series are considered as vestibules (see Vestibules).

(d) Sliding and folding doors: - Manual sliding and folding doors are recommended for narrow spaces not heavily used by the public (fig. 4).

3.3 Door opening

For exterior doors, the minimum opening is 0.90 m when the door is open.

For interior doors, the minimum opening is 0.80 m when the door is open.

The minimum door opening can be 0.75 m if the access is straight or if the door can stay open by itself (fig. 5).

The minimum door width of rest rooms should be 0.75 m.

For doors installed in an opening more than 0.60 m in depth, the clear door opening should be at least 0.90 m (fig. 6).

For double-leaf doors, at least one leaf should have a minimum clear width of 0.80 m (fig. 7).

3.4 Manual door hardware

Operational devices on doors, such as handles, pulls, latches and locks, should be easy to grasp with one hand (fig. 8).

(a) Handles: - Lever-type handles, push plates or pull handles are recommended for swinging doors because they are easy to open. (1)

- Round knobs are not recommended.

Fig. 4

Fig. 5

Fig. 6



- Door handles should be located at a comfortable height between 0.90 m and 1.00 m from the floor surface.

(b) Locks: Locks on entrance doors should be mounted at a comfortable height between 0.90 m and 1.00 m from the floor.

(c) Extra pull handle: To facilitate closing, a door fitted with spring closers should be equipped with an extra pull handle approximately 0.30 m in length, located between 0.20 m and 0.30 m from the hinged side of the door and mounted between 0.90 m and 1.20 m from the floor.

3.5 Automatic doors hardware

Automatic doors can be activated by:

(a) Push buttons located at a comfortable height between 0.90 m and 1.20 m; (b) Activating mats, which can also serve as a location cue (fig. 2);

(c) Card-insert switch;

(d) Remote control.

3.6 Threshold (fig. 8)

Thresholds should be omitted wherever possible. Weather-stripping at the door bottom is preferred to thresholds.

The threshold should not be more than 20 mm higher than the finished floor level.

Thresholds higher than 6 mm should be beveled or have sloped edges to facilitate the passage of a wheelchair.

3.7 Exit doors landing

The exit landing should not be lower than the finished floor level by more than 20 mm.

3.8 Glazing and glazed doors

Outward swinging doors and doors in public corridors should have low windows to enable users to see oncoming traffic. The

Fig. 7

Fig. 8

bottom edge of the window should not be higher than 1.00 m from the finished floor level (fig. 8).

Completely glazed doors should be avoided in buildings frequented by people with visual impairments.

Glazed doors should be clearly marked with a coloured band or mark placed for the benefit of all users at a height between 1.40 m and 1.60 m (fig. 2).

3.9 Kick plates

Kick plates are useful in protecting the finish on the lower part of the door. Kick plates should be between 0.30 m and 0.40 m in height (fig. 8).

3.10 Signage

In public buildings, the function or room number, incorporating international symbols should be identified at eye level, i.e. between 1.40 m and 1.60 m (fig. 8).

Room numbers should be placed on door frames and not on doors themselves so that the room number is visible even when the door is open.

3.11 Colour

The door or the door frame can be painted in a colour that contrasts with the adjoining wall to facilitate its identification by people with visual impairments.


It is recommended that automatic doors replace heavy, hard-to-open swinging doors.

Door openings narrower than 0.75 m should be widened. A swing-clear hinged door may be used to slightly enlarge an opening.

Notes:

(1) Lever type handles can be activated by hand, elbow or other means.


9. CORRIDORS


Long and narrow corridors creating orientation difficulties.


To provide well-dimensioned corridors to facilitate the passage and maneuvering of a wheelchair.


3.1 General

Wide corridors are useful for wheelchair users, service equipment, high traffic areas, etc.

3.2 Width

The unobstructed width of a low-traffic corridor should not be less than 0.90 m. This also allows maneuverability in 90 turns (fig. 1).

The unobstructed width of a public corridor should not be less than 1.50 m. The recommended width is 1.80 m (1) (fig. 2).

To allow maneuverability in 180 turns, the minimum circulation space should be as shown in figure 3.

The corridor width should allow maneuverability through the doors located along its length (fig. 2) (fig. 4).

3.3 Obstructions

Obstacles protruding into the corridor, such as drinking fountains or public telephones, should be placed outside the circulation path, in alcoves or cul-de-sacs (fig. 5).

Overhanging signs and obstacles should be mounted at least 2.00 m high (fig. 6).

Fig. 1

Fig. 2

Fig. 3


3.4 Surface

Changes in surface level of more than 13 mm should be ramped.

Floor surfaces should be non-slip and even. Carpets should be securely fastened.


Narrow corridors should be widened along their full length if feasible; otherwise, passing areas should be located at appropriate intervals along the corridor length.

The minimum width of the passing area should be 1.50 m and the minimum length should be 2.40 m.

In highly restricted spaces, the height of an obstacle or sign can be dropped to 1.95 m.

Notes:

(1) 1.50 m is the minimum width for two wheelchairs to pass each other or for one wheelchair to make a full turn.

Fig. 4

Fig. 5

Fig. 6

Understanding Community-Based Rehabilitation

Table of Contents

Introduction The multi-sectoral approach Programme criteria The components of community-based rehabilitation programmes Sectors and roles for the development and implementation of community-based rehabilitation

Summary

Introduction

This publication focuses on understanding community-based rehabilitation (CBR). It does not try to define CBR, as it has

become apparent in recent years that CBR defies definition. This is because its simplicity and complexity have led to

confusion about what CBR means. The simplicity of CBR has to do with its history of starting with the delivery of primary

rehabilitation therapy to people with disabilities in their communities[1]. The complexity of CBR is the result of the current

concept that CBR programmes should be multi-sectoral (or multi-disciplinary) so that they can provide assistance in all of

the areas which are central to improvement of the quality of life of people with disabilities. This complexity recognizes the

need for close coordination, collaboration and cooperation between governmental and non-governmental organizations of

all types and at all levels.

The basic concept inherent in the multi-sectoral approach to CBR is the decentralization of responsibility and resources, both

human and financial, to community-level organizations. In this approach, governmental and non-governmental institutional

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and outreach rehabilitation services must support community initiatives and organizations.

For the multi-sectoral approach to CBR to be successfully translated into action, both governmental and non-governmental

service capacities need to be improved in most countries of the Asian and Pacific region. Of special importance is

improvement of the capacity and skills for facilitating community involvement. Such improvement and related activities must

be closely coordinated to ensure the optimum use of scarce resources. In accordance with the multi-sectoral concept,

systems are developed, at the community level and among governmental and non-governmental organizations, that interact

and reach out to each other.

Another factor for the success of the multi-sectoral approach is the empowerment of the community to assume responsibility

for ensuring that all its members, including those with disabilities, achieve equal access to all of the resources that are

available to that community, and that they are enabled to participate fully in the social, economic and political life of the

community.

This approach ensures that what is done in the name of CBR actually fits into the reality of the community and is owned by

the community.

The Multi-sectoral Approach

The starting point for understanding CBR is the following approach agreed to in 1994 by ILO, UNESCO and WHO[2]:

Community-based rehabilitation (CBR) is a strategy within community development for the rehabilitation, equalization of

opportunities and social integration of all people with disabilities. CBR is implemented through the combined efforts of

disabled people themselves, their families and communities, and the appropriate health, education, vocational and social

services.

This approach to CBR is multi-sectoral and includes all governmental and non-governmental services that provide assistance

to communities. Many of the services which can provide opportunities for and assistance to people with disabilities are not

traditionally considered relevant to CBR programmes and people with disabilities. Examples include community development

organizations, agricultural extension services, and water and sanitation programmes.

In the ILO-UNESCO-WHO approach to CBR, the phrase "within community development" is understood to be the following


strategy recommended by the United Nations[3]:

... the utilization, (in an integrated programme)[4], of approaches and techniques which rely on local communities as units of

action and which attempt to combine outside assistance with organized local self-determination and effort, and which

correspondingly seek to stimulate local initiative and leadership as the primary instrument of change.

In the CBR context, community means: (a) a group of people with common interests who interact with each other on a regular

basis; and/or (b) a geographical, social or government administrative unit.

Programme Criteria

The development and implementation of CBR programmes should be based on the following criteria:

1. People with disabilities must be included in CBR programmes at all stages and levels, including initial programme

design and implementation. In order to give significance to their involvement, they must have distinct decision-making

roles.

2. The primary objective of CBR programme activities is the improvement of the quality of life of people with disabilities.

3. One focus of CBR programme activities is working with the community to create positive attitudes towards people

with disabilities and to motivate community members to support and participate in CBR activities.

4. The other focus of CBR programmes is providing assistance for people with all types of disabilities

(physical, sensory, psychological and mental); for people of all ages, including older people; for people affected by

leprosy; for people affected by epilepsy; and for other people who may be identified by the community as needing

special assistance.

5. All activities in CBR programmes must be sensitive to the situation of girls and women. This is because in many

communities throughout the Asian and Pacific region women are not treated equally. When they are disabled, the

problems that they face in life are doubled. Furthermore, women are usually the primary family care-givers for all people

with disabilities.

6. CBR programmes must be flexible so that they can operate at the local level and within the context of local conditions.



There should not be only one model of CBR because different social and economic contexts and different needs of

individual communities will require different solutions. Flexible, local programmes will ensure community involvement and

result in a variety of programme models which are appropriate for different places.

7. CBR programmes must coordinate service delivery at the local level. Community members seldom understand the

different roles and specializations that are part of providing assistance to people with disabilities. They tend only to see

the problem of disability and only to want access to "one window" for help. They may focus only on where to go and who

to see about a specific "problem", rather than understanding the totality of what constitutes a fulfilling life for a community

member who has a disability.

The Components of Community-based Rehabilitation Programmes

The components of a CBR programme should include:

1. Creating a positive attitude towards people with disabilities: this component of CBR programmes is essential to ensure

equalization of opportunities for people with disabilities within their own community. Positive attitudes among community

members can be created by involving them in the process of programme design and implementation, and by transferring

knowledge about disability issues to community members.

2. Provision of functional rehabilitation services: often people with disabilities require assistance to overcome or minimize the

effects of their functional limitations (disabilities). In communities where professional services are not accessible or available,

CBR workers should be trained to provide primary rehabilitation therapy in the following areas of rehabilitation:

Medical Eye care service

Hearing services

Physiotherapy

Occupational therapy

Orientation and mobility training

Speech therapy

Psychological counselling

Orthotics and prosthetics

Other devices

3. Provision of education and training opportunities: people with disabilities must have equal access to educational

opportunities and to training that will enable them to make the best use of the opportunities that occur in their lives. In

communities where professional services are not accessible or available, CBR workers should be trained to provide

basic levels of service in the following areas:

Early childhood intervention and referral, especially to medical rehabilitation services Education in regular schools

Non-formal education where regular schooling is not available

Special education in regular or special schools

Sign language training

Braille training

Training in daily living skills

4. Creation of micro and macro income-generation opportunities: people with disabilities need access to micro and macro

income-generation activities, including obtaining financial credit through existing systems, wherever possible. In slums and

rural areas, income-generation activities should focus on locally appropriate vocational skills. Training in these skills is best

conducted by community members who, with minimal assistance, can easily transfer their skills and knowledge to people

with disabilities.

5. Provision of care facilities: often, people with extensive disabilities are in need of assistance. When they have no families

or their families are incapable of caring for them, in order for them to survive, long-term care facilities must be provided in the

community where they can get the assistance that they need. Moreover, day-care facilities may be needed to provide respite

for families who either work or need time off for other activities.

6. Prevention of the causes of disabilities: many types of disability can be prevented by relatively simple measures.

Proper nutrition is one of the more significant ways of preventing disabilities. Another important area of disability prevention

is the detection of disability in young children and intervention early in their development, to minimize the effect of

impairment. There are many other areas of disability prevention that are also important. These include activities to decrease

the number of accidents in the home, on the road and at work, as well as other initiatives to encourage people to pursue

healthy lifestyles over the course of their lives.

8. Management, monitoring and evaluation: the effectiveness and efficiency of all CBR programme components, both in the

community and in the area of service delivery outside the community, depend on effective management practices. The

impact of programme activities must be measured on a regular basis. People must be trained in effective management

practices. Data must be collected, reviewed and evaluated to ensure that programme objectives are met. In this way, the

success or failure of a CBR programme can be honestly measured.

Sectors and Roles for the Development and Implementation of Community-based Rehabilitation

The initiative to start CBR programmes and to facilitate their development may come from any one of the following groups.

However, the effectiveness of CBR and the long-term development and sustainability of any CBR initiative will require the

coordination, involvement and collaboration of all seven groups. The seven groups and their suggested roles are as follows:

1. People with disabilities

People with disabilities can and should contribute to all levels of CBR programmes in every position within a programme.

They know what the effects of local conditions are on themselves. They are likely to have a good understanding of those

effects on their peers with disabilities. They also know what impairment really means in the context of their family, community

and nation. This knowledge enables them to be very effective members of a CBR team. They can be more effective than

non-disabled people as role models for and counsellors of other people with disabilities. People with disabilities have an

important role in community education. As community educators, they serve as living examples of people with disabilities

who make a significant contribution, provided that they are given the opportunity and the right type of assistance. CBR

programmes should also facilitate the development of self-help organizations of people with disabilities at the community

level.

2. Families of people with disabilities

Families have the primary responsibility for caring for all of their members. They are the first line of support and assistance

for people with disabilities at the local level. As such, families must be included in CBR programme activities. Where the

individual with a disability is not able, for whatever reason, to speak for himself or herself, a family member should

represent him or her and should be considered a legitimate member of disabled people’s organizations. Members of families

with experience in caring for people with disabilities are the people who most often initiate CBR programmes and are, or

prove to be, the most effective contributors at all levels.

3. Communities

Community members should be involved in CBR programmes at all levels because they already know the local

environmental conditions, the local economy, the local political situation and how to work with them. They also know about

the accessibility, availability and effectiveness of locally available rehabilitation services; who in the community cares

enough about other people to become a programme leader or worker; and, which community members have the knowledge

and skills for training others in micro-economic activities. They are the people most likely to want to live, work and stay in the

community. Community involvement usually requires the agreement and approval, both formal and informal, of the

community leaders.

4. Governments (local, regional, national)

Governments have the most important role in the development and sustainability of CBR programmes. Their cooperation,

support and involvement are essential if CBR is to cover the total population and be sustainable. They should implement and

coordinate the development of the entire programme structure, including the development of the referral system, as well as

the activities within the community. They also should provide resources for non-governmental organizations (NGOs) and

community activities. Finally, they should ensure that discriminatory legislation is changed and that the rights of people with

disabilities are guaranteed and protected.

5. Non-governmental organizations, local, regional, national and international organizations

NGOs, including organizations of people with disabilities, are often able to provide resources and skills to facilitate the

development of new programmes, especially in areas where none exist. They can develop new approaches to CBR and

provide training programmes for government employees, CBR workers, people with disabilities, families, and community

members. NGOs are effective in facilitating the development of community members as CBR programme leaders. They are

often best able to provide long-term care facilities for those people with extensive disabilities whose families cannot or will

not look after them.

6. Medical professionals, allied health science professionals, educators, social scientists and other professionals

Professionals are often in a position where they can, as trainers and educators, facilitate the development of new

programmes by making their knowledge and skills accessible to community members and CBR programme workers. They

can also ensure that they support community efforts by making themselves available and accessible on a referral basis.

When they are in government service, they can advocate and promote the development of CBR programmes as an effective

way to provide local-level services quickly.

7. The private sector (business and industry)

The private sector has a social obligation to return some of the benefits of its operations to the communities that support it. In

the past, this support has largely taken the form of charity. Charity occurs when donors "give" whatever they feel is needed or

appropriate to people with disabilities. This approach to assisting people with disabilities is no longer appropriate and needs

to be changed. Supporting CBR programme activities eliminates the need for charity. CBR support is a much more

appropriate way of directing resources to communities and people with disabilities. By supporting CBR programmes, the

private sector receives credit for its social involvement while being guaranteed that its support is put to effective and efficient

use. Who but trained, knowledgeable community members would know what is most needed by the people of their own

community?

Summary

In recent years a multi-sectoral (or multi-disciplinary) concept of CBR has evolved. That concept emphasizes working with

and through the community to create positive attitudes towards people with disabilities, to provide assistance to people with

disabilities and to make the necessary changes to the environment and service delivery systems.

In response to this conceptual change, CBR is now defined as a community development programme that has seven

different components:

i. Creation of a positive attitude towards people with disabilities;

ii. Provision of rehabilitation services;

iii. Provision of education and training opportunities;

iv. Creation of micro and macro income-generation opportunities;

v. Provision of care facilities;

vi. Prevention of the causes of disabilities;

vii. Monitoring and evaluation.

The resources, skills and initiatives to start and sustain CBR programmes require the cooperation and collaboration of seven

relevant sectors:

i. People with disabilities;ii. Families of people with disabilities;

iii. Communities;

iv. Governments (local, regional, national, international);

v. NGOs, local, regional, national and international organizations, and organizations of people with disabilities;

vi. Medical professionals, allied health science professionals, educators, social scientists and other professionals;

vii. The private sector (business and industry).

Footnotes:* Prepared by the Working Group on CBR of the Regional Inter-agency Committee for Asia and the Pacific (RICAP)

Subcommittee on Disability-related Concerns. ESCAP serves as the secretariat of the Subcommittee. All members of the

Subcommittee contributed to the preparation of the document. The subcommittee, at its fourteenth session in May 1997,

finalized and adopted the document to mark the mid-point (1997) of the Asian and Pacific Decade of Disabled Persons, 1993 - 2002.

1. The Alma Ata Declaration of Health for All and its emphasis on primary health care included services for people with

disabilities. It is this concept that led to the development of the first models of CBR which emphasized delivery of primary

rehabilitation therapy in the community.

2. Community-Based Rehabilitation for and with People with Disabilities, 1994 Joint Position Paper, International Labour

Organization (ILO), United Nations Educational, Scientific and Cultural Organization (UNESCO) and World Health

Organization (WHO).

3. See document E/CN 5/291.

4. The original definition has been changed from "under one programme" to "in an integrated programme".

Promotion of Non-handicapping Environments

Project on the promotion of non-handicapping environments for Disabled and Elderly Persons

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Key Characteristics of the Bangkok, Beijing & New Delhi Pilot Projects Barrier-free Environments: Action Score Sheet Freedom of movement for disabled and elderly persons in the Asia-Pacific Region:

Implementation of the Project on the Promotion of non-handicapping environments Recommendations for further action Training people with disabilities as trainers for the promotion of Non-handicapping

environments Promotion of user-friendly public transport systems for people with disabilities Publications concerning Non-handicapping environments available on-line

Promotion of Non-handicapping Environments for Disabled and Elderly Persons

Objectives

To support selected ESCAP developing countries in the development and implementation of pilot projects on the elimination of physical barriers in the built environment for people with disabilities and elderly persons, using technical guidelines for this purpose developed in Phase I of the project.

Background

The majority of people with disabilities in the ESCAP region are poor. Their opportunities of breaking out of poverty are constricted by the physical obstacles that exist in the built environment. Those obstacles prevent persons with disabilities from attending schools, training programmes and using public amenities.

Many handicapping features also cause inconvenience or are a source of danger to elderly persons, women and children. Thus the promotion of accessibility to minimize or remove those handicapping features will greatly benefit diverse social groups whose needs are neglected in the rapid urbanization under way in the region

The Agenda for Action for the Asian and Pacific Decade of Disabled Persons, 1993 - 2002, recommends measures to improve access for disabled persons' to facilities intended for use by the public. Those include buildings and their surrounding areas, roads, as well as infrastructure for public transport, education, information, housing, employment and commerce.

Under Phase I of the ESCAP project titled "Promotion of non-handicapping environments for disabled and elderly persons in the Asia-Pacific region", a set of guidelines on the promotion of non-handicapping physical environments for disabled persons had been developed. Phase II focuses on the implementation of the guidelines. Under Phase II, seed funding is provided to Beijing and New Delhi for pilot projects Technical assistance is provided to other cities, such as Bangkok and Kuala Lumpur. Implementation of Phase II, a three-year project, commenced in May 1995.

Intended impact

It is intended that this project will generate significant improvements in accessibility for people with disabilities and elderly persons in project areas in a number of capitals of populous ESCAP developing countries.

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Models for access promotion will be created in three subregions (East Asia, South-east Asia and South Asia). The models will generate important lessons for the pursuance of similar work in other cities and towns in ESCAP developing countries. They will also pave the way for related work on improving access to public transport infrastructure and services.

Activities

1. Consultations with concerned Governments and preparations for the Yokohama workshop

2. Recruitment of a project expert on accessibility.

3. Convening of a Workshop on Pilot Projects to Promote Non Handicapping Environments, Yokohama, Japan

4. Finalization of pilot project proposals, including (a) identification of a pilot project site, (b) constitution of a working committee to ensure implementation of the pilot project (c) conduct a survey of the pilot project sites. conduct of an inaugural seminar

5. Implementation of pilot projects, including: (a) public awareness raising and sensitization of professional groups to access promotion, (b) mobilization of additional resources (funding and in-kind), (c) conduct of an inaugural seminar and (d) conduct of a series of three workshops for pilot project start-up, monitoring and evaluation.

6. Facilitation of participation of pilot project technical personnel in a workshop-cum-field study programme in conjunction with global congress on barrier-free living environments; Sendai, Japan, in follow up to the Yokohama workshop.

7. Organization of technical cooperation among developing countries (TCDC) exchanges to build national capabilities on the promotion of non-handicapping environments for persons with disabilities and elderly persons.

8. Documentation of pilot project experience and issuance of a publication for region-wide dissemination.

Donors

This project received generous funding and technical support of the Government of Japan, particularly the Ministry of Construction.

An illustrated report on the promotion of non-handicapping environments is currently being prepared for printing. This report will contain the outcome of the non-handicapping project implementation. For more information contact us at [email protected]


Evaluation of Training Effects for Disabled Individual

At present time, there are many classification Standards on disability/disabled person in the world. Social and cultural factors affect the perceptions of disability or disabled person. General speaking, the common definition of disabled person is: A disabled person is the one who in his or her society is regarded or officially recognized as such, because of a difference in appearance and/or behaviour in combination with a functional limitation or an activity restriction. In the manual entitled "Training in the community for people with disabilities (TCPD), the disabled persons are defined based on "difficulties". for instance, people with difficulty seeing, difficulty hearing or speaking, difficulty moving, no feeling in the hands or feet, strange behaviour, fits and difficulty learning. In these evaluation guidelines of CBR, the above operational definition of disabled person will be used.

The evaluation of training effects for disabled individual can not only reflect the progress of the disabled persons after a period of rehabilitation training, but also the quality and quantity of implementation, management, resource unilization, technical application, in CBR programme. The rehabilitation effect of disabled person is influenced by many factors, such as the type and degree of disabilities, time and measure of training, etc. The functional assessment methods used in rehabilitation center (institution) are too sophisticated and specialized to be mastered by community staff. Therefore it should be considered to establish a kind of method which is simple, practical and easy to be used.

In these guidelines for evaluation of CBR, we try to take the "ability", i.e. daily living self-care ability, moving ability, work ability (learning ability) and social communication ability as the basis for the evaluation of training effect, in combination with the general income, employment, quality of life, schooling, education level, participation in social life and self-attitude of disabled person.

The Key Elements of Evaluation of CBR

The contents of evaluation in CBR consist of three parts: (1) Evaluation of management in CBR, (2) Evaluation of implementation in CBR, and (3) Evaluation of social impacts of CBR.

1. Evaluation of management in CBR

The realization of the CBR goals depends on a management mechanism, which should be scientific, reasonable, effective and sustained. The main duties of management are planing, organizing, allocating personnel, guiding, controlling and blazing new trails, etc. The management of CBR includes policy-making, planing, training of personnel, implementation at all levels, provision or resource, monitoring and evaluation. It involves government and it's departments, NGOs, communities and disabled person's families.

(a) Government's commitment: Government plays a leading role in CBR programme. Government should be involved in making policy and regulations relating to CBR, fitting CBR plan into the social development strategy, taking action, comprehensive study, overall planning, coordinating among sectors and systematic implementation.

The list below shows what are the evaluation contents for government in CBR programme : (i) Integrate CBR programme with the government's working goals and local social development strategy. (ii) Set up CBR leading group, headed by a community leader consisting of departments concerned, and set up a special office with full time persons to cope with the daily work. (iii) Make CBR plan. (iv) Use the feasible network of community, for instance, the primary health care network, social security system. (v) Play an important role in the overall coordination among the sectors involved in CBR programme. (vi) Make and implement roles, regulations and the staff duties. (vii) Establish and perfect CBR resource center. (viii) Allocate personnel and set up professional consult group. (ix) Financial support (amount, allocate and expenditure) (x) Evaluation should be carried out regularly.

(b) Sectors concerned should take the respective responsibilities and work closely Due to the special circumstance of disabled persons, the diversity of their needs, the broad extents of their participation in social life and the challenges of achieving their rehabilitation goal, it is essential to make sectors concerned take on their own responsibilities in CBR services and work collaboratively to offer timely referral services. Each country and region has it's own characteristics in policy, administrative mechanism, social structure, etc. The government should identify the main sectors needed for the development of CBR and clarify their responsibilities.

(i) Public health Sector Establish and perfect primary health care network. Training CBR professionals . Set up or provide training place and facilities.

Guide and offer referral services in medical rehabilitation for people with disabilities.

Improve public health, reduce disease, prevent disabilities.

(ii) Education Sector Make laws and regulations in order to protect disabled people's right in

education. Conduct integration education . Create education conditions which is based on families and community. Launch education project for people with visual impairment and carry out

anti-illiteracy education for disabled persons.

(iii) Labour (or employment) sector Make laws and regulations to protect disabled people's right of work. Set up welfare enterprises or shelter workshops to arrange job for disabled

persons. Through multiple channels at various levels and in a variety of forms to

assist disabled persons to obtain job. Create opportunities and condition to provide technical training for

disabled so as to upgrade their skills and techniques. Conduct vocational training projects for job placement.

(iv) Social Affairs (or civil affairs) Sector Make laws, regulations, and preferential policy to secure and improve the

life of disabled persons. Provide relief and subsidies through various channels for disabled persons

living in poverty . Provide social welfare services and placement.

(v) Other Sectors

CBR services bring together a wide range of partners, for example, culture, sport, women, child, justice, defence, etc. Sectors assume their responsibilities for policy making, planning and carry out CBR programme.

(c) Non-Governmental support NGOs can participate in CBR services in many aspects. There are many types of NGOs, for instance: organizations representing various disabilities, religious group, charity organizations, professional societies, funding organization, etc.

The evaluation of NGO's support in CBR should put emphasis on the following contents:

social mobilization and awareness creating. take part in making CBR plan. training manpower for CBR programme.

cooperation with other sectors or organizations concerned to implement CBR programme.

provide technical support and referral services. organize volunteers to participate in CBR activities. launch CBR project for demonstration. conduct research project on CBR. provide welfare activities and fund assistance.

(d) Communities involvement

The developmental motive and force come from the community itself. Community's involvement include the follow main aspects:

integrate CBR programme with the community developmental plan. provide fund support. know well the rehabilitation needs of disabled people. fully utilize community's resources(manpower, network, facilities, institution,

material, etc.). encourage and mobilize community member, disabled people and their family

members to participate in CBR programme. educate community, create a sound environment and atmosphere for disabled

people. extent appropriate rehabilitation skill.

2. Evaluation of implementation in CBR

(a) Evaluation of CBR delivery system Most countries in Asia and the Pacific region depend on the public health care network, social security network, women organizations, child health care and person's organizations. These networks form the backbone of CBR delivery systems and referral systems, with which disabled persons can get rehabilitation service at family, community through national levels. An effective CBR network should be provided with four functions, namely, organization management, professional technique, monitoring and evaluation, information and statistics.

(i) Organization management system: This system consists of sectors concerned and administrators. To provide good CBR services for disabled people, sectors concerned should maintain a close cooperation in the work to bring about the overall effect of services.

(ii) Professional technique system: This system consists of resource center and rehabilitation professionals.

Resource center: WHO recommended many departments or units which can play roles in management, coordination, implementation, professional guide, personnel

training, monitoring and evaluation of CBR. The resource center should be established in co-operation with the existing centers or institutions, for example, health care facilities, rehabilitation centers, educational facilities, vocational facilities, legal structures, welfare facilities, etc. The evaluation to a resource center should base it's responsibilities in CBR services.

Rehabilitation Professionals: As rehabilitation services are facing various categories of disabilities, multiple professional fields are needed for the rehabilitation consumers. For instance, people with physical disabilities need orthopaedic doctors, neurological doctors, PT, OT, equipment or aids. If the service receivers are adult, they need vocational training of various kinds and also barrier-free facilities; people with mental retardation need early identification, psychological consultant, education, vocational training, etc. Professionals, teachers, family members and disabled people may work together as a team. Rehabilitation professionals are working in various fields at different levels, including community-based level, intermediate level, provincial and national level. In fact, this professional system is the rehabilitation referral system. The evaluation of the professionals should be conducted in accordance with their role and duty in rehabilitation services.

(iii) Monitoring and evaluation system The evaluation of this system includes monitoring and evaluation of rehabilitation effect on the disabled individual and the services provided. Monitoring and evaluation in CBR have been emphasised by WHO, UNDP, UNICEF, and other organizations and institutions. Monitoring and evaluation may be done by staff members within the community or by people from the ou

A Literature Review on CBR Evaluation

Along with the development of CBR, its evaluation has been explored to some extent. Over the past decade, a range of monitoring and evaluation approaches and methods has gradually been developed. These approaches and methods are useful to development workers, including those at community level.

The earliest study on the impact of CBR was published by Mendis and Nelson (1982). The authors visited and followed up the results in five countries, namely: Botswana, India, Mexico, Pakistan and Sri Lanka. The study was an early indication of the effectiveness of the practice. O'Toole (1988) presented an evaluation of a CBR project he initiated in Guyana. O'Toole used a multiple-baseline design and evaluated the outcome of the project using several different techniques, with measurements before and six months after the end of the programme. Its purpose was to scientifically evaluate a small scale experiment to genuinely determine the validity and potential of CBR approach". Arnold (1988) made a description of a successful project carried out in Nepal. Mendis (1988) gave a very detailed account of CBR programme in Vietnam in 1988, which included the objectives of the project, management, results, coverage, effectiveness of functional training, schooling, economic productivity, the use of WHO manual "Training

in the Community for People with Disabilities", intermediate level support, and costs. Saunders and Zinkin (1990) reported an outside evaluation of a CBR programme carried out on a representative sample. The report contained no statistical data but a large number of observations. Lagerkvist (1992) undertook a scientific outsider evaluation of two CBR programmes: one in the Philippines and one in Zimbabwe. The results obtained by assessment history, testing of ability in activities in daily living (ADL) and communication and family discussion. Brar (1992) published the paper "Research and Evaluation in Community-Based Rehabilitation - Some Views Derived from UNICEF Experiences". It focuses on the processes and purposes of documentation, evaluation and research into CBR. CBR Project in Bacolod, Philippines, initiated in 1981, expanded the coverage of its service to over 3000 disabled persons in 112 villages by the end of 1992. Kwok (1991) reported "An Evaluative Research Design for Urban Community-Based Rehabilitation Programme-A care study from Hong Kong in 1991. The paper presented a quasi-experimental evaluative research design in assessing the impact of CBR in Hong Kong. Rajendre et al. (1994) published a paper, "The Sourabha CBR Project - An Evaluation Study". The methodology used in this study is simple enough to do an evaluation of a fairly large sized project engaged in rehabilitation and to elicit reliable and valid answers. The main aim of the evaluation study was to evaluate the extent to which the CBR project had achieved its objectives in the various sector of rehabilitation and to see whether the existing organizational system had adequately helped in the implementation of the programmes. The study also tried to identify the kind of changes. Three questionnaire were adapted from the draft UNDP Guide on Evaluation of Rehabilitation Programmes for Disabled People. Korpela et al. (1993) presented an evaluation of rehabilitation services. They used a follow-up method to evaluate the extent of use of technical aids for disabled children. Mitchell et al. (1993) reported an evaluation of CBR about attitudes towards people with disabilities changed in the city of Guangzhou, China. The measurement of attitudes towards the disabled was made using "the Attitude Towards Disabled People (ATDP) Scale" developed by Yuker, Blick and Campbell. They claimed that "the scale has reasonably good" content validity.

A Note on the Use of the Guidelines

CBR practices have shown vast and diversified features in countries due to the differences in socio-economic development, culture, social customs, political structure and the rehabilitation needs of disabilities, etc. There is no single best way to do CBR, and no single evaluation system for CBR. So it is impossible to make an evaluation guidelines for all CBR programmes in the world. These guidelines are not meant to be adopted without change for each and every particular CBR project. However, it should offer the basic trend of thought, and general framework for the evaluation of CBR.

General speaking, there are two types of evaluation of CBR. The first type of evaluation is used for a particular CBR project, for example, CBR project for children with disabilities, CBR project for mentally retardation, social mobilization, etc. In this type of evaluation, effectiveness, efficiency, relevance, sustainability and impact are considered as the core factors, The second type is used for administrative concerns where CBR as a regional plan is being conducted, for example, country, province, or a city. A country is

carrying out CBR development plan in its jurisdictional area, thus it needs to evaluate all CBR programs in the territories concerned. Only in this way can we know how the whole CBR plan is being implemented. Although these Guidelines are drawn up for a CBR project, the principles, contents, methods can be put to use for CBR plan in a district or a region.

CBR was formulated in an attempt to meet the massive rehabilitation needs of disabilities in the world, and it develops side by side with the development of services delivery. Since 1976, there has been a wide variety of research projects on the evaluation of CBR through out the world, each one adapted to the local implementation of CBR. By continuously reviewing the evaluation of CBR, the Guidelines could become more systematic, relevant and practical.

It is inevitable that the Guidelines presented here would contain limitations. The researchers would appreciate critical comments from specialists, researchers, CBR workers, colleagues and people with disabilities.

Purposes of the Study Determine how community-based rehabilitation providers (CRPs) currently serve SSDI/SSI beneficiaries Operationally define CRPs for purposes of SSA research and policy development Estimate relative effectiveness of CRP programs to enable beneficiaries to return to and sustain work Develop recommendations on what may be done to increase effectiveness in return to work through CRPs Establish publicly searchable database on CRPs

Relevance to SSA Public Policy Needed knowledge about capabilities, resources, and programs available through CRPs for SSA and non-SSA recipients Needed knowledge regarding issues and potential incentives to encourage CRPs to assist SSA recipients in return to work Needed knowledge regarding research-based practices that may be applied to increase return to work rates for SSA recipients

Methodology (1 of 2) Expand existing database on CRPs to identify, verify status, obtain additional data, and include all known providers in The Directory Adapt-supplement RTC instrumentation to collect basic resource, population, and program data on providers serving and not serving SSA recipients Use multi-method data collection procedures to maximize participation (standardized mail questionnaires; multiple follow-up; on-line, mail, fax reporting)

Methodology (2 of 2) Conduct telephone interviews with 100 pairs of CRPs matched on selected demographic and organizational variables to identify CRP reasons and incentives to serve SSA

recipients Establish The Directory for on-line reporting by CRPs and for public access Develop codebook and methodology for maintaining database for use in proposed Phase II and III research

Toward An Operational Definition of CRPs: (Gross estimates from extremely small samples)

Toward An Operational Definition of CRPs:

Other Relevant RTC Research: Identification of Quality Practice Models Assess how CRPs define quality services and outcomes achieved based upon service patterning, populations, communities, and funding sources Identify structurally homogeneous models that achieve positive outcomes Estimate differential utility of identified models by community type and geographic location Estimate relationship between identified practice models and individual satisfaction, employment, benefits access, and community-participation outcomes

For additional information, we can be reached at …. Research and Training Center on Community-Based Rehabilitation Programs Stout Vocational Rehabilitation Institute College of Human Development University of Wisconsin-Stout Menomonie, WI 54751 www.rtc.uwstout.edu or www.cec.uwstout.edu [email protected] Voice: 715-232-1389 Fax: 715-232-2251

All persons with disabilities should be recognized as citizens and should be accorded all rights extended to other citizens.

Persons with disabilities must have the equal opportunity to participate in the social and economic life of the community.

Persons with disabilities must have access to supports and resources to enable them to participate.

The goal of this process is to create a warm, loving environment within their homes and communities

An Evaluation of a Community BasedRehabilitation Programme for Peoplewith Chronic Obstructive Pulmonary

Disease and Their Carers

Part 1Ambulatory Care Unit Purchasing Office South Australian Health Commission

BACKGROUND

The project examined the effectiveness of a multidisciplinary educational programme upon the health status of clients with COPD and their carers. The possible effects of rehabilitation upon health service usage were also considered.

OBJECTIVES

The project sought to determine if community-based health services have the potential for improved patients' health outcomes whilst reducing the demand on hospital outpatient and private general practice services. The principle objective of the project was to pilot a community-based rehabilitation program for the management of chronic bronchitis and emphysema which:

Enhanced continuity of care across hospital and community settings; Increased the individual's ability to self-manage his/her condition and, in so

doing, reduce the usage of hospital and general practice services; Improved the health status of carers; Clarified the patterns of service usage for ambulatory hospital and general

practice services, and assessed the costs of providing such care.

METHODOLOGY

Three groups of subjects were reviewed:

A treatment group which included patients receiving standard outpatient care at TQEH's Department of Thoracic Medicine were recruited;

A comparative group from RGH. Carers of patients with COPD at both TQEH and RGH.

The evaluation tools utilised included:

Service usage questionnaire.This questionnaire asked four simple questions about visits to GPs, specialists and hospitals during the preceding six-to-twelve months.

SF-36 (Ware and Sherbourne, 1992)Provided a comprehensive, psychometrically sound and efficient way of

measuring health from the patient's perspective by scoring standardised responses to standardised questions.

Patterns of general practice and ambulatory hospital service usage in the four months prior to participation in the community-based programme were compared with those in the four months following completion of the programme.

A second follow-up was conducted at the six month post-programme stage to determine whether the anticipated benefits for health status and service usage are sustained.

From archival data, contingency tables showing frequency of service usage were compiled. As the treatment group were not randomly selected, non-parametric statistical tests were also used to analyse the data. On completion of the rehabilitation programmes and at the four and six month follow-ups, results of both groups of participants were analysed using the Kruskal-Wallis H test and the Friedman test.

Using the Trendstar patient costing system, service costs for inpatient and outpatient activity for project participants during the 1995-1996 financial year were established and reviewed.

RESULTS

This research project met many of its aims and objectives and addressed the questions that were originally posed. Although the results of tests show that the rehabilitation programme had no apparent effect on the health of patients and carers, it does not mean that the programme was ineffective.

Whilst there appears to be a decrease in service usage following the rehabilitation programme, this was not accompanied by the anticipated improvement in health status. Further study would be needed in order to determine whether rehabilitation programmes impact upon clients' use of service RECOMMENDATIONS

This project has identified a number of avenues for future enquiry. Whilst generated within this setting, these issues are pertinent also to other organisations seeking to provide effective services to people with COPD and their carers. Thus, it is recommended:

1. That a larger study be conducted into the effectiveness of rehabilitation as the sole rehabilitative intervention.

2. That further research questions relating to Respiratory Disease be collaboratively pursued.

3. That complementary interventions (smoking prevention, healthy lifestyle activity, Palliative services be implemented.

4. That further information be gathered about the use of hospital specialists rather than GPs.

5. That further information be gathered about the frequency and impact of co-existing anxiety disorders for people with COPD.

6. That a system be developed for tracking what pharmaceuticals are utilised by patients with Respiratory Diseases.

7. That specific attention be given to the development of culturally appropriate services.

8. That examination be made of the information already provided in hospital and GP settings.

9. That further research be conducted to identify whether interpersonal and environmental factors have the potential to exacerbate COPD symptoms.

10. That translocation of services be responsive to the variability that exists within a population, adapting service provision to differences in a culture, life experiences, receipt of services and views of health.

NB: the recommendations have been abbreviated for inclusion in this summary. The more descriptive recommendations are contained in the body of the report.

For Further Information contact the Project Manager:

Helen GibbsWestern Domiciliary Care & Rehabilitation Service21A Belmore Terrace, Woodville Park, S.A. 5011Phone: (08) 8348 5300Fax: (08) 8268 5391

WHAT IS COMMUNITY-BASED REHABILITATION ?

Rehabilitation is a process that assists people with disabilities to develop or strengthen their physical, mental and social skills to meet their individual/collective specific skills. Rehabilitation traditionally involves provision of therapy (physical, occupational and speech) in various settings like special institutions, hospitals, out-patient clinics or

community homes. Community based rehabilitation is characterized by the active role of people with disabilities, their families and the community in the rehabilitation process. Knowledge and skills for the basic training of disabled people are transferred to disabled adults themselves, to their families and to the community members. Personnel skilled in rehabilitation technology train and support community workers, and provide skilled intervention as necessary. Some countries have a national coordination committee for rehabilitation, composed of representatives of various sectors providing rehabilitation services including NGOs of disabled people and those providing rehabilitation services. In addition to participating in the national coordination committee, each sector and organization has its specific plans to promote rehabilitation.

Epidemiology

Disability is a major public health problem in Africa with about 35 million disabled people constituting around 7% of the total african population. Causes of disability include communicable diseases (poliomyelitis, leprosy, tuberculosis, trachoma, otitis media, measles, meningitis, parasitic diseases, etc), poor quality of perinatal care, injuries (particularly those as a result of road traffic, domestic and occupational accidents), malnutrition due to Vitamin A and iodine deficiency, chronic somatic and mental conditions including rheumatic diseases, diabetes, paralysis, alcohol and drug abuse. About 75% - 80% of disabled people in the African Region are in rural areas, where services for prevention and rehabilitation are either limited or unavailable.

Definitions:

Rehabilitation includes all measures aimed at reducing the impact of disability for an individual, enabling him or her to achieve independence, social integration, a better quality of life and self-actualisation.Rehabilitation includes not only the training of disabled people but also interventions in the general systems of society, adaptations of the environment, protection of human rights and empowerment.Protection of human rights is an obligation for the authorities of each country, for its communities and for every citizen. Disabled people shall have the same rights to a life in dignity as others, and there must be no exceptions. Special attention may be needed to ensure the following: access to health and social services; to education: ability training and income generation opportunities: to housing, transportation and to buildings; to information; to cultural and social life, including sports and recreational facilities; to representation and full political involvement in all matters of concern to them.

Community-based rehabilitation (CBR) is a common-sense strategy for enhancing the quality of life of people with disabilities by improving service delivery in order to reach all in need by, providing more equitable opportunities and by promoting and protecting their rights.CBR builds on the full and co-ordinated involvement of people with disabilities and their families. It should be supported all levels of society: community, intermediate and national. It seeks the integration of the interventions of all relevant sectors - educational,

health, legislative, social and vocational - and aims at the full representation and empowerment of disabled people, promotes interventions in the general systems of society, and adaptations of the physical and psychological environment that will facilitate the inclusion and the self-actualisation of disabled people. The goal of CBR is to bring about a change; to develop a system capable of reaching all disabled people in need and to educate and involve governments and the public. CBR should be sustained in each country by using a level of resources that is realistic and maintainable.--------------------------------------------------------------------------------------Suggestions for appropriate action at different levels:

1. At the community level, CBR is seen as a component of an integrated community development programme. It should be based on decisions taken by its members. It will rely as much as possible on the mobilisation of local resources. The family of the disabled person is the most important resource. Adequate training and supervision should promote its skills and knowledge, using a technology closely related to local experience. The community should support the basic necessities of life and help the families who carry out rehabilitation at home. It should further open up all local opportunities for education, functional and ability training, jobs, etc. The community needs to protect its disabled members to ensure that they are not deprived of their human rights. Disabled community members and their families should be involved in all discussions and decisions regarding services and opportunities provided for them. The community will need to select one or more of its members to undergo training in order to implement the programme. A community structure (committee) should be set up to provide the local management.

2. At the intermediate level, the government should provide a network of support services. Its personnel should be involved in the training and technical guidance of community personnel, should provide services and managerial support, and should liaise with referral services.Referral services are needed to receive those disabled people who need more specialised interventions than the community can provide. The CBR system should seek to draw on the resources available both in the governmen-tal and non-governmental sectors.

3. At the national level, CBR seeks the involvement of the government in the leading managerial role. This concerns policy-making, planning, implementing, co-ordinating, and evaluating the CBR system. This should be done in co-operation with the communities, the intermediate level and the non-governmental sector, including organisations of disabled people.

Comment: CBR is not a blueprint or ready-made solution. It calls for flexibility, taking into consideration the social, cultural and economic situation, the daily realities as experienced by persons with disabilities, the country's existing services and personnel, and its phase of development, priorities and policies.Projects or programmes that do not apply the basic principles of CBR, on the other hand, should use another term to describe their activities.

Independent Living Movement Enbodies Community-Based

Rehabilitation Concept

by Shoji NakanishiChairperson: Japan National Assembly of Disabled Peoples' international

(DPI-Japan)Director, Human Care Association

PERSONS with disabilities are confined at home by the inaccessibility of houses, shops, roads and public transportation. This situation leads to a lack of visibility of disabled persons in the community and to their inactive community involvement. A community, in order to be successful in developing its socio-economic activities, has to mobilise community resources, especially its human resources. Both Community-based Rehabilitation (CBR) and Independent Living (IL) programs have illustrated that a community can be vitalised by its strong commitment to participation of disabled persons.

In Japan, IL movement was introduced by Ed Roberts, founder of the first IL centre in USA in 1981. His introduction of the concept was followed by Judy Heumann and other disabled advocates of IL, who toured throughout Japan to give the philosophy of IL to people with disabilities. Consequently, these lectures evoked an enthusiastic debate everywhere they visited. They propounded on the philosophy of IL, but did not dwell on the services to be provided at IL centres.

They itemised the four key concepts of IL centre as follows:

1. People with disabilities should live in their communities 2. People with disabilities are neither patients to be cared, children to be

protected nor gods to be worshipped 3. People with disabilities themselves can identify the necessary assistance

needed and manage it. 4. People with disabilities are the victims of social prejudice, rather than the

victims of disabilities.

Based on the concept of traditional rehabilitation, persons with disabilities were treated as the defective models who were expected to reach out to non-disabled people. IL philosophy declares that asking for help is not a shame at all and that it never harms a disabled person's self-reliance. It evaluates that making one's own choice and decision is important. It is defined in the World Program of Action Concerning Disabled Persons that rehabilitation should be limited to the medical treatment for a certain period of time and it must not control the life of a person with disability for a life time.

IL centres in USA are required to satisfy the following qualifications in order to receive federal grants, under the Amendment of Rehabilitation Act of 1978:

1. More than 51% of the board members must be people with disabilities,

2. At least one of the top executives who makes important decisions should be a person with disability,

3. At least one of the staff should be a person with disability, 4. IL centre must give the following essential services:

o information and referral (personal assistance, housing, etc) o peer counselling (by disabled peers) o IL program (including IL skills) o individual advocacy.

In Japan, the criteria of IL centres follow the American example.

The first IL centre, Human Care Association, in Japan was established in Hachoji, Tokyo in June, 1986. Before the Association was formed, the Japanese disability movement had been somewhat slanted towards protest, demand and advocacy. Persons with disabilities had not been aware of providing services by themselves. Since the formation of the Association, the disabled staff have definitely realised the empowerment to become service providers, instead of service recipients.

The service recipients by the Human Care Association are people with all types of disabilities, including infirm, aged people. Persons with extensive disabilities are inclined to be not only dependent but also lacking in basic living skills, such as self-expression, communication with others including personal assistants, creative time-spending, and the like, due to the custody of their parents at home and their teachers in school. The Association launched two major programs, i.e. the personal assistance dispatchment service and the organisation of independent living program.

If IL centres provide only personal assistance service, clients would tend to be dependent on assistants and would just keep on living alone without knowing the importance of making choice and decision on their own. On the other hand, if only IL program is provided by IL centres, the users would be knowledgeable about IL skills and philosophy. However, they will soon realise that nothing will happen or change without the provision of a personal assistance service system in their communities. That is why the Human Care Association started both services at the same time.

The concept of IL is completely different from the traditional social welfare, such as institutionalisation. Therefore, as IL centres develop and provide community services, functions and role of the staff of existing institutions will become ambivalent. For the staff who try to meet service users' needs at nursery homes or institutions for disabled people, it is natural to find that the philosophy and services of IL centres are ideal. The Human Care Association believes that the deep struggle among governments and institutions exists because they could not enforce what they think is reasonable and ideal.

The most important objective of IL centres now is to convert "traditional social welfare services" to "social services based on service users' needs." Present public services are limited to the aged people above 65 or those classified into 6 grades according to the severity of disabilities, which results in segregation and overprotection.

CBR in Asia and the Pacific has shown that disabled peoples' deep involvement in the community is a basic factor which prevents the disabled community from a state of impoverishment. IL and CBR approaches are the same in concept, although the IL movement has been developed in industrialised countries. What is common to the approaches is that a disabled person has a crucial role in motivating a community for the implementation of community-based activities.

Continuing Education for Community Rehabilitation Personnel

The University of New Hampshire Institute on Disability, the University of Hartford Rehabilitation Training Program, and the Assumption College Institute for Social and Rehabilitative Services collaborate to form the Rehabilitation Continuing Education Program (RCEP) for community rehabilitation personnel for the New England region. The purpose of the project is to meet the needs of community rehabilitation personnel such as employment specialists, employment consultants, job developers, and

supported employment program managers for continuing training to upgrade skills, infuse innovations into practice, and ensure high quality employment outcomes for consumers with disabilities.

The consortium offers a comprehensive approach to continuing education, including:

a seminar series leading to certification as an Employment Specialist; a variety of seminars for direct service personnel on topical areas; a certificate program for supported employment management personnel;

community rehabilitation program management seminars; a regional technical assistance program for responding to requests for specific

assistance; a supported employment mentorship program to facilitate the exchange of

knowledge from experienced personnel to new staff; a regional training consortium for increased collaboration and utilization of

training resources; a regional newsletter to disseminate innovative practices and information of

interest to community rehabilitation personnel; and a training program for school personnel on transition from school to work and for

employers related to employment of individuals with disabilities.

As part of the consortium, the Institute on Disability offers three-day seminars on Effective Job Development, Facilitating Natural Supports in the Workplace, Assistive Technology and Job Accommodation, Person-Centered Career Planning, and Transition from School to Career. Approximately 8 seminars are held per year at accessible locations throughout New England. In addition to seminar attendance, trainees complete a pre-seminar assignment and post-seminar fieldwork. Instructors include both Institute staff and outside experts in the field. Seminars are revised to reflect new information about best practices and based on an annual program evaluation process.

The Institute on Disability also coordinates a mentorship component of the Rehabilitation Continuing Education Training Program (RCEP). Experienced staff members, following a nomination and application process, attend a mentorship training seminar. Mentors are individuals interested in sharing their expertise with new staff, networking among themselves, keeping in touch with new ideas and research, and advancing the professionalism of the field. Mentors can be first-line supervisors, program coordinators, or direct service staff such as employment specialists or job developers who are at the equivalent of a "senior" level or who might be expected to train new staff as part of their job. About 4 or 5 new individuals are selected every year from each New England state to join the network.

A three-day Mentorship Seminar is held once each year. The seminar teaches proven strategies widely used in the business world for helping staff members to grow as professionals by employing creative problem solving, obtaining support and resources, and setting clear performance objectives.

Following the seminar, participation in the Mentorship Network includes membership in an email "listserv" for communication among the entire mentor network about news, trends and ideas in community rehabilitation; receipt of a quarterly mailing with information about new research or developments in the field of community rehabilitation;

and occasional opportunities to attend and/or present at RCEP seminars or other conferences and trainings. Mentors carry out one or more self-selected leadership activities during the year following the seminar. This can include:

training new staff within one's own organization; assisting a staff member from another organization who has requested

assistance with a particular issue; joining the RCEP's list of technical assistance providers; conducting a training or conference presentation, including participating in the

training of mentors in future years, or writing an article for publication; carrying out a special project or writing a grant to expand the community

rehabilitation services provided in one's own community; or helping select future community employment mentors.

Publications Related To The Continuing Education for Community Rehabilitation Personnel Project

Family Support Partnerships Project

Family Support Partnerships is a statewide initiative to enhance and expand New Hampshire's Family Support System to more fully meet the needs of older families who are caring for their adult children with disabilities living at home. Funding for the project comes from the State of New Hampshire: Health Care Transition Funds, the Administration on Developmental Disabilities, and the State of New Hampshire: Division of Developmental Services. Staff from the Institute on Disability are working in collaboration with Community Support Network, Inc. (CSNI), Area Agencies, and Franklin Piece Law Center to achieve the following objectives:

enhance current family support systems;

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expand parent-to-parent networks; develop a mentor model of support for parents; engage families in future estate and life planning ; increase community involvement for adults with disabilities through the use of

volunteers; develop and provide information on legal issues that pertain to families; and enhance working relationships between the various agencies and groups

supporting families headed by older parents. Publications Related To The Family Support Partnerships Project

Self-Determination for Persons with Developmental Disabilities

Self-Determination for Persons with Developmental Disabilities is a National Program Office (NPO) of the Robert Wood Johnson Foundation, one of the largest health care organizations in the United States. In 1996 the Foundation awarded $5 million to 19 states to develop and implement a new approach to supporting people with developmental disabilities. In 1999 the Foundation provided an additional $150,000 for a second round of small-scale awards for technical assistance and planning in self-determination. This self-determination concept is based on the premise that control over the services and supports that are offered to people with developmental disabilities should rest with the person receiving those services.

The overall objective of this initiative has been to change state service delivery systems to actively support, encourage, and enable people to directly control the services they receive and the resources provided on their behalf. Restructuring a system to enable those receiving supports to "have it their way" means changing virtually all of the components of the current system to a greater or lesser extent. The Foundation has extended the project through December of 2000 with the possibility of additional years. The movement to adopt the principles of self-determination has received broad support from states across the country, as well as a number of national organizations.

Summary of Accomplishments

To date, changes have taken place in all of the project sites, as well as in other states such as New Jersey, New York, North Carolina and Louisiana, which have established their own initiatives with state or local funding. Other states, such as Maryland, Vermont, New Hampshire, Oregon and Michigan, have changed their entire service systems to embrace self-determination. Ohio, Minnesota, Massachusetts, Florida and Connecticut have piloted programs that have made significant changes in the way services are provided, funded, organized and delivered.

Self-advocacy organizations continue to spread the message and are leading policy and practice transformation efforts in many states and localities, as well as nationally.

Preliminary evaluation data collected from the project sites indicates positive changes in satisfaction with supports, employment, choice, and control. One of the most exciting changes that has occurred is with individual control and direct involvement, service costs have not increased, but rather have remained the same or decreased.

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The movement to adopt the principles of self-determination has received broad support from organizations such as the National Parent Network on Disabilities, Self-Advocates Becoming Empowered, the ARC US, People First organizations, the Health Care Financing Administration (HCFA), the National Association of States Directors of Developmental Disabilities Services, Inc. (NASDDDS), the Autism National Committee, and the Federal Administration on Developmental Disabilities.

In 1999 the Foundation awarded the NPO an additional $206,567 to support mini-grants to develop and disseminate nationwide informational implementation of self-determination, and to support two national conferences targeted to parents and state-level policymakers.

Long-term services for people with developmental disabilities are primarily funded by Medicaid dollars through the Home and Community-Based waiver program. The flexibility of this program has made it possible for states to restructure the way services are funded and organized to bring the person receiving supports, and his or her parent or guardian, into the traditional relationship between the state and the service provider. In support of the grantees and other states, extensive technical assistance was provided through site visits, national trainings, and presentations at state and national meetings.

The NPO has recently entered into a relationship with HCFA to support a senior-level position in the HCFA Central Office. This position will address technical assistance, program design, and operational issues involved in the implementation of The Americans with Disabilities Act, the "Olmstead Decision" requiring the transition of residents of nursing homes and other institutions to the community, and the conversion to a system embracing principles of self-determination. This relationship with HCFA is valuable in that it will increase the NPO's involvement in the implementation of federal policy decisions at the state and national levels. The position will also coordinate and cooperate with the NPO in providing technical assistance and support to states in changing statutes, regulations, and ordinances to adopt the principles of self-determination.

Over 60,000 of the NPO's own newsletter, Common Sense, were distributed in 1999. The NPO web site logs between 16,000 and 20,000 hits per month.

Summary of Goals The National Program Office will continue to build on the success of directly engaging states and state directors in promoting self-determination. Crucial to the achievement of this goal is the active engagement of the self-advocacy community, the parent movement, and the provider industries.

The following are goals of the NPO to continue the promotion of self-determination:

Communication: Completion of a national video, continued development of the web site, and expanded dissemination of the Self-Determination newsletter, Common Sense.

Information Dissemination: The NASDDDS in partnership with the NPO will finalize a monograph documenting best practices in states across the country. The NPO will produce monographs and reports covering important issues in self-determination, i.e., guardianship and decision-making and leadership

Leadership Development: The NPO will continue to assist in developing leaders in the field of self-determination through activities shared with the Alliance on Self-Determination and the NASDDDS. The NPO will continue to work with HCFA on an ongoing basis. The NPO will continue to work with organizations such as the AAMR and the Leadership Forum.

Planned Meetings: The NPO will support a number of national meetings to further promote self-determination and other issues important to the disability community. Upcoming meetings include: The International Conference on Self-Determination, National Parent Summit, the National Parent Organization's Annual Meeting, Self-Advocacy Meetings, Regional Meetings, HCFA Meetings, and Topical Meetings focused on specific issues such as, service coordination; development of funding streams; working with service providers; changing the system; guardianship and decision-making; assuring quality, health, and safety; use of individual budgets; and ongoing parent leadership support.

Publications Related To The Self-Determination for Persons with Developmental Disabilities Project

The Center for Housing and New Community Economics (CHANCE)

The Center for Housing and New Community Economics (CHANCE) was established in March of 2001. CHANCE's mission is to improve and increase access to integrated, affordable, and accessible housing coordinated with, but separate from, personal assistance and supportive services. CHANCE's purpose will be to offer alternatives to approaches that segregate, congregate, and control people with disabilities. The IOD will work in partnership with ADAPT in all aspects of the Center. ADAPT is a national organization that focuses on promoting services in the community for people with disabilities.

The development of community housing and services for people with disabilities has been a major national policy direction for the past 20 years. Unfortunately, the administrative structures supporting community services typically promote congregate and agency controlled approaches to housing and personal assistance services. While the number of people living in institutions and large facilities has decreased, the vast majority of individuals residing "in the community" live in residences owned and controlled by someone else. Housing and personal assistance services are dictated far more often by government and agency preferences than by the needs and desires of persons with disabilities. Current approaches have not assured that people with disabilities are afforded control over, or even a voice in, the most basic decisions regarding where they live, with whom they live, the nature of the assistance they receive, and how they spend their time.

CHANCE will:

ensure that people with disabilities are afforded the opportunity to direct all aspects of their lives, including where they live, how they receive their services and supports, and planning for their economic well being;

reject mandatory links of housing and personal assistance;

http://iod-40.unh.edu/FMPro?-db=pubs.fm5&-lay=html&-sortfield=Category&-SortField=Product%20Name&-format=publications/list.html&ProjectCode==14&-token.3=RP&-token.0=Self-Determination%20for%20Persons%20with%20Developmental%20Disabilities&-max=40&-find

http://iod-40.unh.edu/FMPro?-db=pubs.fm5&-lay=html&-sortfield=Category&-SortField=Product%20Name&-format=publications/list.html&ProjectCode==14&-token.3=RP&-token.0=Self-Determination%20for%20Persons%20with%20Developmental%20Disabilities&-max=40&-find

improve access to integrated, affordable, and accessible housing coordinated with, but separate from, personal assistance and supportive services;

work toward and advocate for systems change at the local, state, and federal levels and the collaboration of the public and private sectors;

encourage the collaboration of the public and private sectors; and offer progressive alternatives to approaches that segregate, congregate, and

control people with disabilities.

Training and Technical Assistance Opportunities Letter (PDF)

Publications Related To The CHANCE Project

Dollars and Sense

In March 1998, President Clinton signed an Executive Order directing the federal government to remove all barriers to employment for people with disabilities. As part of that directive, the Social Security Administration issued competitive grants to several states, including New Hampshire, to develop policies and strategies to remove work disincentives and other barriers to employment for SSA/SSI recipients. In New Hampshire this project is called Dollars and Sense.

The Dollars and Sense Mission Statement is:

To evaluate, design, and implement changes in the interagency processes that synthesize employment, public assistance, and acute and long term health care with the goal of increasing the employment and self-sufficiency of individuals who receive Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) in the State of New Hampshire.

The Five Major Initiatives of Project Dollars and Sense are: 1. Education, Outreach, and Training. Develop and implement a system that provides continuous training and information that is both accurate and easily accessible. Increase New Hampshire's capability to provide high quality, accurate and accessible benefits counseling and work incentive information so that more beneficiaries go to work and increase their earnings. Raise awareness regarding benefits disincentives and the need for reform among individuals who rely on benefits as well as with the general public such that a network of support is in place when the need for systems change advocacy develops. Develop consumer involvement at all levels of the project.

2. Create a Medicaid Buy In Program. Develop and successfully obtain approval for a Medicaid Buy-In benefit, which enrolls and allows people with disabilities to go to work or increase their earnings while retaining their Medicaid Benefits.

3. Model and evaluate a Vocational Services System which allows individual choice and control over resources and supports.

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http://iod.unh.edu/press-release/letter-prof-dev.pdf

4. Create new financial services and structures which allow people with disabilities to become more independent. Severe the link between disability and poverty by compelling existing public and private entities to develop innovative financial products; requiring banks and credit unions to facilitate access to capital; providing financial incentives and encouraging economic development. Narrow the gap between benefit dependency and self- sufficiency among people with disabilities.

5. Develop an inclusive and permanent work incentive structure in New Hampshire. Develop a statewide network for the ongoing implementation of the strategies and systems initiated by Project Dollars and Sense. These structures will support the provision of work incentive counseling and training, foster new ways of providing services and resources to people with disabilities, and continue to develop creative public/private partnerships which allow people with disabilities to access capital and save money.

COMMUNITY BASED REHABILITATION

GENERALWHO, ILO, UNESCO in 1994 presented a joint position paper giving the following definition:

“Community based rehabilitation is a strategy within community development for the rehabilitation, equalisation of opportunities and social integration of all people with disabilities. CBR is implemented through the combined efforts of disabled people themselves, their families and communities, and the

appropriate health education, vocational and social services”.

This is accepted by many people as a working definition.

CURRENT COMMON USAGE OF THE TERM `CBR’1. Home based services provided by families to their disabled members in their homes.2. Self help projects run by disabled persons.3. Out-reach projects run by rehabilitation institutions.4. NGO projects run by paid CBR workers. 5. An ideology which promotes inclusion of disabled persons in developmental projects.6. Institutional programmes located in villages.7. A term to describe anything related to rehabilitation of disabled persons.

ASSESSMENT OF REHABILITATION RESOURCES

1. Availability of the funds.2. Support of the community for the CBR programme.3. Availability of technical information on CBR.4. Trained personnel to carry out CBR interventions.5. Availability of family volunteers to care for the disabled person.6. Availability of institutional and professional support for the CBR.7. Availability of efficient planning and administration for the CBR project.8. Availability of infrastructure at reasonable cost.9. Availability of aids and appliances for rehabilitation.Accessibility1. Free accessibility.2. High motivation to give.3. Proximity.4. Reasonable cost.5. Grant of permission to avail the resource.6. Awareness that the resources are available for use.

COMMUNITY VALUESThe value systems that a community follows can also have negative or positive implications for service providers in community based programmes.

Western values Eastern values Individualism

Achievement of an individual’s Collectivism Harmony with the group’s

rights is highly valued collectivewisdom is more valued than a singleindividual’s achievement

UNDERSTANDING THE “COMMUNITY” IN CBRWhile the issue of defining and understanding the community in which a programme is to be initiated is crucial in any sphere of community based development activity, it assumes a greater complexity in the context of community based rehabilitation (CBR) work. In a CBR programme, there are multiple groups with vastly differing interests such as persons with disabilities, family members, the general community, professionals, government officials, and so on. These groups in turn have widely varying needs, such as functional independence, supportive services, management, resource development and so on. Each group requires unique methods of mobilising them, such as advocacy, self-help, training, awareness raising and so on. The unique challenge for CBR is to understand and address the breadth of these community interests, needs and mobilisation methods.

Different levels of community participation in development projectsLevel I Level II Level III Level IV Level VCommunity receives benefits from the service, but contributes nothing

Some personnel, financial or material contributions from the community for the service, but no involvement in decision making

Community participates in lower level decisions about the daily managementof the service

Participation goes beyond lower level decision making to monitoring and policy making

Programme isentirely run by the community, except for some external financial and technical assistance

SUSTAINABILITY

EVALUATION

TRAINING OF PERSONNEL FOR CBR

MANAGING CHANGE

DECENTRALISATION AND DELEGATION OF AUTHORITY

Community-Based Rehabilitation: A Compilation of Resources

Jennifer MichelleOctober 13, 2002

General Information on CBR

CBR Resourceshttp://cbrresources.org/

Links: http://cbrresources.org/#anchor449725

Community-Based Rehabilitation and its Emergence through Primary Health Care – A Policy in the Making Paperhttp://www.eenet.org.uk/documents/scuk/cbrthrou.shtml

Community-Based Rehabilitation and the Health Care Referral Services: A Guide for Programme Managers,1994 http://whqlibdoc.who.int/hq/1994/WHO_RHB_94.1.pdf

Guidelines for Conducting, Monitoring and Self-Assessment of Community-Based Rehabilitation Programmes:

Using Evaluation Information to Improve Programmes, 1996

http://whqlibdoc.who.int/hq/1996/WHO_RHB_96.3.pdf

Training the Trainers in Community-Based Rehabilitationhttp://maic.jmu.edu/journal/5.2/focus/johnpatterson.htm

http://maic.jmu.edu/journal/5.2/focus/johnpatterson.htm



http://www.eenet.org.uk/documents/scuk/cbrthrou.shtml

http://cbrresources.org/#anchor449725

http://cbrresources.org/

Understanding Community-Based Rehabilitationhttp://www.unescap.org/decade/cbr.htm

CBR Programs

Guyana Community-Based Rehabilitation Programshttp://www.sdnp.org.gy/cbr/

USAID Program Final Evaluation ReportOrder from http://www.dec.org/order_info.cfm

PD-ABL-068 Final Evaluation Report(24) Rec_no=85989 Project assistance completion report : World Rehabilitation Fund project (part of the Central American survivors' assistance [CASA] project) Perez, Carla M. USAID. Mission to Honduras Sep 1994, 6 p. [7 p.]

Project No: 5220380 OTR-0000-A-00-8120-00

PACR of a project (5/90-2/94) to provide rehabilitation services tononcombatant victims of civil strife in Honduras. The project has beenimplemented by the World Rehabilitation Fund (WRF) and its newlycreated Honduran affiliate, the Honduran Rehabilitation Association(HRA).

The project has exceeded its initial objectives; a total of 2,031persons received rehabilitation services, such as fitting withprosthetic or orthotic devices, physical training, and family supporttraining; 56% of the beneficiaries were under age 17. HRA is not onlyworking with the disabled, it is one of the largest, if not the largestemployer of disabled workers in Honduras. The approach used by WRF/HRAwas the costly community-based rehabilitation (CBR) approach. Thequality of service was judged good by most recipients, althoughresponse time (about 3 months) was considered too long; this was due inpart to the geographic distances that made delivery in the communitysetting difficult. It should also be noted that WRF/HRA were helpingto fill a huge need. WRF/HRA requested additional support in 4/93 which was denied becauseUSAID felt that the CBR approach would always need external funding.Instead, USAID/H provided HRA with TA in management, marketing, and

http://www.dec.org/order_info.cfm

http://www.sdnp.org.gy/cbr/

http://www.unescap.org/decade/cbr.htm

cost accounting through 8/94. A new highly qualified HRA manager isrestructuring the production, administration, and accounting units ofHRA and a marketing plan is being developed. HRA has already receivedsmall orders from El Salvador and local sales are rising steadily. The following lessons were learned. (1) Inclusion of a businesscomponent in the original design aimed at gradual self-sufficiency ofthe local implementing PVO (HRA) could have ensured development, aswell as humanitarian impact. (2) A CBR program is labor-intensive andcostly; the majority of HRA's 53 employees were more involved inrehabilitation services than in the production of prosthetic/orthoticdevices for sale -- the key to the Association's sustainability. (3)Future CBR initiatives in Honduras should focus on developing theability of the existing communities to locate external funding sourceswhere needed, even if this means going outside the community andresults in "primary or secondary" integration.

Union of Palestinian Medical Relief Committees – Community-Based Rehabiltiationhttp://www.upmrc.org/content/activities/activities_j.html

World Association for Psychosocial Rehabilitation

http://www.who.int/ina-ngo/ngo/ngo156.htmThis organization works to promote community-based rehabilitation for the mentally ill. Collaborates with World Health Organization.Dr Zebulon TaintorDept. of PsychiatryNew York University Medical Center19 East 93rd StreetNew York, NY, 10128USATel.: (212) 831 66 85e-mail: [email protected]

Medline Listings

Soc Sci Med 2002 Jun;54(12):1867-74

Social integration of children with epilepsy in rural India.

Pal DK, Chaudhury G, Sengupta S, Das T.

Neurosciences Unit, Institute of Child Health, University College, London, UK.

http://www.who.int/ina-ngo/ngo/ngo156.htm

http://www.upmrc.org/content/activities/activities_j.html

[email protected]

Only a small fraction of people with epilepsy in developing countries has accessto medical facilities. Even with effective treatment, their psychosocial needsare often overlooked in the absence of obvious disability. In rural areas,community-based rehabilitation programmes assist in the integration of peoplewith disabilities into employment and the community. However, the functionalimpairment associated with epilepsy is not well recognised in interventionprogrammes in developing countries. We report, for the first time, the socialactivities of children with epilepsy and their peers in rural India. We employeda cross-sectional design using a new age and sex-specific social activityquestionnaire. Population screening in the context of a community-basedrehabilitation programme identified 88 children with epilepsy and 250 randomlyselected controls. A trained interviewer administered the questionnaire tomothers in Bengali. Girls' activities were principally domestic, whilst boys'were mostly outdoors and involved peers. All groups of children with epilepsyhad significant social deficits, equally for boys and girls in the age rangefrom 2 to 18 years (p < 0.05). Boys with epilepsy had limited peer groupactivities, and parents conferred fewer responsibilities to school age andadolescent children compared to controls. The nature and degree of deficits werebeyond the constraints imposed by neurological impairment. Our findings inpre-schoolers were consistent with parental attitudes of overprotection found inprevious research. We conclude that social integration needs active and earlypromotion among children with epilepsy. The assessment of remediable risk andprotective factors in the family and community is an important practical areafor research in community-based rehabilitation.

PMID: 12113441 [PubMed - indexed for MEDLINE]

A community of citizens: disability rehabilitation in the Palestinian transitionto statehood.

Giacaman R.

Institute of Community and Public Health, Birzeit University, [email protected]

PURPOSE: It has been widely argued that community based programmes offerconsiderable advantages to the classical institutional forms of health andrehabilitation services delivery. With about 10 years of experience in operatingcommunity based rehabilitation projects (CBR) for the disabled, the Palestinianexperience points to potentially serious problems relating to the conception andoperationalization of such programmes in real life situations. ISSUES: Ofimportance is the issue of the impact of communal care on the already burdenedlives of women, especially when such care is expected to be voluntary in nature.Caretaking in the Palestinian context, especially of the disabled, elderly and

the sick, is a pre-defined sex linked role dictated by a patriarchal society andsystem of policy making that excludes women from economic and social life. Thevoluntary care aspect entailed in the CBR conception and practice, can and doescontribute further to the exclusion of women not only from the labour force, butfrom most other aspects of life as well. This represents an apparentcontradiction between the needs of two excluded groups, the disabled and women.The other problematic entailed in the communal model of caring for the disabledis the strategic and operational bias focusing on community, to the exclusion ofthe notion of social rights of all citizens, and the role and duty of statestructures in the fulfilment of the disabled basic needs. Such an approach canonly relegate the disabled rights back to their original place as charity. Onthe other hand, when CBR projects are operated holistically, in the context ofsocial movements existing within power relation and with a broader democraticagenda engaging different groups-including a disability movement-as is currentlytaking place in Palestine, CBR projects can also turn into a mobilizing forcefor the social rights of all excluded groups. CONCLUSION: Thus the question isnot merely one of governmental involvement as opposed to the involvement ofnon-governmental organizations and charitable societies in community basedprojects. Rather, it is a question of the right to a decent life for all, indignity and security, that citizenship and statehood promise, but have yet todeliver in many developing countries, especially in Palestine.

Publication Types:ReviewReview, Tutorial


Soc Sci Med 2001 Aug;53(3):333-48

Evaluation of medical rehabilitation in community based rehabilitation.

Evans PJ, Zinkin P, Harpham T, Chaudury G.

School of Urban Development and Policy, South Bank University, London, SW8 2JZ,UK. [email protected]

Almost all governments and non-governmental organisations in developingcountries use a community-based rehabilitation (CBR) approach to work withdisabled people. Although disabled people's organisations reject thecategorisation of disability in individual terms, 'medical rehabilitation' isstill regarded as an important but time limited process within rehabilitation.The paper lists measures and methods used in a comprehensive evaluation, andpresents a practical method to examine the quality of medical rehabilitation.The method was developed and applied in an evaluation of service needs and

service provision for disabled people in low-income communities, for theMinistry of Welfare, Government of India. The method described is a tracerapproach. It assesses quality in three aspects of medical rehabilitation: (i)Technical quality, based on application of minimum technical standards for eachimpairment. (ii) Interpersonal quality, by observation of service sessions andinterviews with service users. (iii) Management (structural) quality, bycomparing the rehabilitation goals of service users and service providers. Themethod differs from most others in that it is process oriented, as opposed tooutput oriented. The method meets the challenges of providing low-costassessment of a difficult outcome measure (the quality of medicalrehabilitation), within a complex process (CBR). It is anticipated that thetracer method will be useful to the objective evaluation of disability servicesthroughout the developing world.


Child Care Health Dev 1999 Jan;25(1):27-35

What is community-based rehabilitation? A view from experience.

Crishna B.

Spastics Society of Eastern India, Calcutta, India.

This paper argues that unless community-based rehabilitation (CBR) programmesacknowledge the complexities of working in diverse communities with their uniquecultural, religious, social and economic conditions, they will not be able tomeet the needs of service provision for people in developing countries. Anexamination of some of the main aspects that form the essential components ofCBR, the realities of the manner in which they interact, and the way they shouldinteract is presented from experiences of CBR services initiated by the SpasticsSociety of Eastern India, in West Bengal, India.


Int J Rehabil Res 1998 Sep;21(3):311-21

A training strategy for personnel working in developing countries.

O'Toole B, McConkey R.

Guyana CBR Programme, CBR Resource Centre, Kingston, Georgetown, Guyana.

Throughout the world a common consensus has emerged that community basedservices offer the best prospect of meeting the needs of people with

disabilities and their families. However the shift away from specialist centresand institutions has not been accompanied as yet by a reappraisal of thetraining required by personnel working in these new forms of services. Thispaper describes the training strategy which has been developed by the CommunityBased Rehabilitation Programme in Guyana, South America. This has threecomponents. First, the identification of training needs of families and supportworkers, second, the production of video-based training packages on specifictopics and third, the utilisation of available personnel to act as local tutors.This strategy has resulted in over 7000 CBR volunteers, health workers, teachersin mainstream schools, families and villagers having access to information andskills which otherwise they would be denied. An immediate priority in developingcountries is to nurture the human resources required to develop and sustain thissort of training strategy and proposals for doing this are outlined.


Disabil Rehabil 1998 Feb;20(2):66-73

Community-based rehabilitation and stigma management by physically disabledpeople in Ghana.

Kassah AK.

Department of Health and Social Science, Harstad College, Norway.

Community-Based Rehabilitation (CBR) has been recommended by the World HealthOrganization as an antidote to the poor coverage of rehabilitation facilities inthe developing countries. This attempt is to make it possible for disabledpeople to receive the help they need to be able to go about their dailyactivities aided by trained personnel from their own communities. Research hashowever indicated that many disabled people do not patronize rehabilitationprogrammes. Many who give it a try leave dissatisfied. Most of the disabledpeople will rather migrate to the cities to beg. Many reasons, includingeconomic and location of rehabilitation centres in the cities, have beenassigned for this trend of affairs. This paper however sees the problem asattempts by disabled people and their families to manage 'felt' and 'enacted'stigma. The paper seeks to question the importance of Community-BasedRehabilitation, since experienced and perceived stigma seem to be morepronounced in the rural areas, and begging is often seen as the fastest way togain some independence, reduce stigma and avoid stigmatized environments.

Publication Types:ReviewReview, Tutorial


Int J Rehabil Res 1993 Jun;16(2):133-41

Community-based rehabilitation cadres: their motivation for volunteerism.

Lysack C, Krefting L.

School of Rehabilitation Therapy, Queen's University, Kingston, Ontario, Canada.

Volunteer workers, or cadres, are critical to the successful implementation ofcommunity-based rehabilitation (CBR) programmes. To date, relatively littleresearch has examined the importance of motivation in health volunteers ingeneral, and especially CBR workers. This paper reports the major findings of afield study in rural Indonesia. A multimethod design within a broad qualitativeresearch framework which focused on the personal experiences of CBR volunteerswas utilized. Descriptive data were obtained from written questionnaires, focusgroups and key informant interviews. Research findings indicated that volunteercadres perform considerable duties and face numerous difficulties in the courseof their CBR activities. Incentives also play an important role in determiningthe motivation and ultimate performance of volunteer cadres. Developing anunderstanding of what it is like to be a volunteer CBR cadre has importantimplications for rehabilitationists interested in developing and sustaining CBRprogrammes and is clearly critical to any evaluation of CBR.


Int J Rehabil Res 1991;14(1):1-12

Early prevention of childhood disability in developing countries.

Simeonsson RJ.

School of Education, University of North Carolina, Chapel Hill 27599-8180.

The concept of prevention, while implicit in most early intervention efforts,has not been comprehensively articulated as a basis for conceptualizing earlyintervention services. The growing recognition of the importance of earlyidentification and intervention for infants and young children, and involvementof the family, are factors which contribute to conceptualizations of serviceswhich are preventive in nature. This recognition parallels broader concerns forfamily support programmes which have a preventive focus and seek to enhance thedevelopment of children and families. The purpose of this paper is to present acomprehensive framework for the provision of child and family service byconceptualizing early intervention in terms of levels of prevention.

Specifically, the concept of primary, secondary, and tertiary levels ofprevention will be presented as a framework suitable to encompass the preventivefunction of community based rehabilitation. The relevance of early prevention isbased on the premise that the condition of childhood disability can be preventedat primary, secondary, and tertiary levels. Viewed in this way, the problem orcondition of developmental delay or disability in children can be addressed ateach of the three levels to effect a reduction of its expression, its durationor extended impact. Primary, secondary, and tertiary prevention can beimplemented in the context of community based rehabilitation to address thesegoals: (a) enhance development and minimize the potential for delay; (b)minimize the need for special education and related services; and (c) minimizethe likelihood of institutional or other restrictive care outcomes.


Popline Listings

Title: Disability and gender at a cross-roads: a Palestinian perspective. Author: Atshan L :53-9. Source: Oxford, England, Oxfam, 1997. In: Gender and disability: women's experiences in the Middle East, [edited by] Lina Abu-Habib. Year: 1997 Language: English Abstract: Examining the historical attitudes towards disabled people held by Palestinians, it is noted that disability in traditional Palestine has been synonymous with shame. Because of the norms of female beauty and the role of women in the family, a disabled woman is seen as a failure on several counts with no hope for marriage or social mobility. Over the years, such perceptions were gradually altered, with a focus on the physical injuries of young men. This focus deflected the disability debate away not only from women, but also against those with congenital or nonphysical impairments. Recognizing these issues, the General Union of Disabled Palestinians was formed as a pressure group bringing together disabled people, regardless of form of impairment or its cause. The Union acknowledged issues on "double discrimination" caused by gender and disability-based subordination. Other community-based rehabilitation programs were also set up to promote community awareness and activity on issues affecting disabled persons. However, it is unlikely that the prevailing medical model of thinking about disablement and disability can hope to effect a social shift in attitude, without an accompanying change in perception of a range of issues surrounding equal opportunities.Document Number: PIP 157967

Title: UNDP study addresses world's victimization, neglect and human rights abuse of people with disabilities. [Press release]. Author: Anonymous Corporate Name: United Nations Development Programme [UNDP]

Source: [Unpublished] 1993 Dec 3.[5] p. Year: 1993 Language: English Abstract: A study entitled Prejudice and Dignity: An Introduction to Community-Based Rehabilitation by Dr. Einar Helander, Senior Program Coordinator for UNDP's Interregional Programme for Disabled People, reveals the distressing situation of the disabled worldwide, and recommends measures that need to be taken both in industrial and developing countries to address this problem. People with disabilities now comprise 5% of the global population and in 1992 there were 290 million people worldwide with moderate or severe disabilities. Adding to this approximately 23,000 a day, the number of people who are disabled is expected to reach 573 million by the year 2025. With rehabilitation, people with disabilities are enabled to take care of themselves. Governments, however, have often relied on charitable organizations to provide traditional less than satisfactory institutional-based care. A review of existing services in 57 such institutions in an Asian country showed insufficient funding, deplorable physical conditions, apathetic and/or abusive care, untrained or poorly-trained staff, unskilled management, deficient programs, and lack of family involvement. Recently the involvement of a strong organized movement of the disabled themselves has made governments increasingly aware of the problem and has somewhat improved their situation in developed countries. The study proposes a rehabilitation program with equality, social justice, solidarity, and integration. This community-based rehabilitation approach advocates the creation of a caring society by the local community members within a permanent system in which governments provide training for personnel, offer technical supervision, and operate the referral system. A current collaborative endeavor in Ghana, between a number of UN agencies, the national government, several NGOs, the local community, and the disabled themselves provides community-based services for people with disabilities. A community in Portugal all but replaces its geriatric hospital with in-home care provided to the elderly by local volunteers.Document Number: PIP 097249

Title: Community based rehabilitation in India -- an emerging trend. Author: Thomas M Source: INDIAN JOURNAL OF PEDIATRICS. 1992 Jul-Aug;59(4):401-6. Year: 1992 Language: English Abstract: Community-based rehabilitation (CBR) efforts made by pediatricians and other medical personnel for the disabled in India have increased over the years; however, there is still a lag in program effectiveness research, manpower training, and technology development. The International Labor Organization finds that many CBR models are lacking and recommends community-specific approaches which are flexible and adaptable to perceived needs of the disabled and their families and to the impact of interventions. Distinctions must be made between "levels of care," "limits of care," and "support needed." Policy-makers must commit both to provision of CBR and to the fulfillment of quality of care. 10% of the world's population is disabled; Alma Ata endorsed the view that rehabilitative services must be included in health care systems. In India recognition has been given to the cost effectiveness of CBR, which integrates the

disabled into society through education, prevention, and programs in medical, vocational, and social rehabilitation. The aim is to reduce handicaps. Rehabilitative functions may be served by members of the community, by the family, or by specialists. Wider coverage in CBR programs may be a distinguishing characteristic as well as a "client centered, bottom up approach." Decentralized programs are relatively new to India, and it is unclear how effective this approach will be. DRC was begun in India in 1985 to handle about 70% of the disabled population; the basic model is described as well as the Action Aid program which was begun in 1988 to fill the gap in service provision.Document Number: PIP 080399

Title: Parent evaluation of community based rehabilitation in Jamaica. Author: Thorburn MJ Source: INTERNATIONAL JOURNAL OF REHABILITATION RESEARCH. 1992;15(2):170-6. Year: 1992 Language: English Abstract: Much may be gained by intervening early in the lives of disabled children. While children may benefit from making developmental progress, early intervention may also help improve parental understanding, acceptance, competence, parental understanding, acceptance, competence, parent-child interactions, and overall integration into community services. Advocates also indicate their preference for direct parental involvement in teaching in home-based programs. The nongovernmental organization, 3D Projects, offers community-based rehabilitation services to more than 300 disabled children in rural south-central Jamaica. The parents of all clients receiving home-based services were interviewed to help assess the projects' impact. Home visits were much appreciated, with respondents especially in favor of the semi-academic and physical exercises. Respondents felt that they were quite involved in the training of their children. 92% were able to say which disability afflicts their child. While no baseline data were taken for this study, this degree of knowledge is significantly higher than that found in samples of individuals from comparable studies. 50% desired additional information related to their child's schooling, behavior, and speech and learning problems. More parental education is therefore warranted. 67% stated that the program has increased their sensitivity and concern for their children, 76% felt that the condition of their child is improving, and 93% generally felt positive about the program and would recommend it to other parents.Document Number: PIP 079023

Title: Where have all the children gone? PROJIMO. Author: Werner D Source: LINKS. HEALTH AND DEVELOPMENT REPORT. 1992 Spring;9(2):14-7, 20. Year: 1992 Language: English Abstract: Few children now frequent the facilities of PROJIMO, initiated as a rehabilitation program for disabled rural children in Mexico, ever since the organization begun accepting physically disabled and socially troubled young adults. PROJIMO (the

Program of Rehabilitation Organized by Disabled Youth of Western Mexico) began in 1981 as a community-based rehabilitation program run by disabled villagers. In its first years of operation, the program served primarily children suffering from disabilities caused by polio or cerebral palsy. PROJIMO quickly gained international recognition and became an inspirational model for similar programs throughout the Third World. But in 1983, PROJIMO took a decision that would transform the character of the organization. That year, after much debate, members agreed to take in Julio, a 15-year-old quadriplegic whose spinal cord injury was the result of an accidental shooting. In taking care of Julio, the team of disabled villagers had to learn an entirely new set of skills: treatment and prevention of pressure sores, the use of catheters, bowel programs, exercise activities, etc. They also had to develop ways of treating Julio's depression, giving him a sense of self-worth. Julio was followed by an influx of other young adults with spinal cord injuries. Many of these young adults came from troubled and violent backgrounds, such as Juan, an orphan who had made his way out of poverty by trafficking drugs. Juan was left paralyzed in a shootout with enemies. The new patrons have scared away PROJIMO's original audience. Parents fear bringing their disabled children to a center frequented by people raised in a culture of violence. The solution appears to be splitting PROJIMO into 2 organizations: one for disabled children and one for socially troubled adults.Document Number: PIP 072777

Urban Community Based Rehabilitation (UCBR) and Caregiving in the Family

J Kwok, R Ngan & D Shek+

AbstractThe interest in CBR is spreading fast in the Region, as its multidimensional nature opens up new frontiers in policy and practice. However, the situation and role of family caregivers, who are the major partners of CBR, have not been fully understood and recognized. Based on a territory wide research on family carers in Hong Kong, the authors report a common phenomenon of caring dilemma and strees, feminization of caregiving and ageing of caregivers' challenges have been suggested.

Introduction

In many Asian and Pacific cities, there has been a revival of interests in the dynamics and potentials of the family to provide continual long-term care to its disabled members. The interests are further raised by increased CBR practises in the Region (UNESCAP, 1989; Helander et al., 1989 & 1992; Kwok & Purves; 1992; International Labour Organization, 1994). The practice of CBR is partly based on the assumption that in the family there are members who, after training,

can and will deliver effective rehabilitation exercises. However it is not feasible to provide services to a large under-privileged group by relying wholly on community volunteers and family trainers. Helander et al. (1992) therefore considered it necessary to incorporate CBR into national development programmes and a national network of CBR be supported by government. Since then the multi-dimensional nature of CBR strategies has opened up new frontiers in CBR policy and practice. At the same time it also causes difficulty in explaining what CBR actually embraces (ILO, UNESCAP & WHO, 1994; RICAP, 1997). In all these efforts to understand CBR, the situation and role of family caregivers have not been fully recognized, which are more a result of a lack of research studies on this area.

+ Dr. Joseph Kwok and Dr. Raymond Ngan are Associate Professors, Department of Applied Social Studies, City University of Hong Kong. Dr. Daniel Shek is Associate Professor, Department of Social Work, Chinese University of Hong Kong.

The Research Problem

The present research investigated the following aspects of Hong Kong caregivers:

1. the caring involvement;

2. the informal network;

3. use of formal services;

4. opinion towards the informal and formal support;

5. psychological well-being;

6. general mental health; and

7. stresses related to the disability situation and caring tasks.

Sampling Design

The present study focused on caregivers and cared- for persons from the following five disability categories, namely : mental retardation, psychiatric disability, physical handicap and multiple handicap, old people with physical disabilities, and people with chronic illness. Other than the old people category, which specified age group as 60 and above, other groups were chosen from people aged 16 and above. Other than the category of people with chronic illness, the other four

categories were further selected according to the following service types: living with family, waiting for residential care, on regular day care programmes, receiving residential care. For the category with chronic illness, they were all living with their families as there were no special rehabilitation services set up for them yet. The sampling design gave a total of 17 subgroups, by disability grouping and by service status of cared-for persons.

Sampling and Data Collection Methods

The study used the full listing of both GOs and NGOs that were concerned with rehabilitation, and all their service units as the population frame. A cluster random sample of service units from all regions in Hong Kong was made. For disabled people waiting for residential care, a random sample was constructed from the government central list of disabled people and old people waiting for admission to residential institutions. For subjects with chronic illness, a random sample was constructed from a membership listing of a NGO. The types of chronic illnesses covered were diabetes, heart diseases, cancer, renal failure terminal stage and stroke.

Data were collected by personal interviews from summer 1994 through February 1995. The response rate of 66 organizations and their service units invited to take part in the research were around 63 percent. A second stage non-response rate, based on those persons consented to interview, was around 30 percent. For subjects on waiting lists for residential care, a random sample of 1,973 participants was selected, and the response rate for this group was around 56 percent. For the entire sample, a total of 775 successful interviews with caregivers, covering 824 cared-for persons, were conducted, representing an average response rate of about 48 percent. (See Table 1) Table 1. Sample of caregivers by disability types and service status of cared-for person

Disability type

Living with family

Waiting for residential services

Day care services

Residential services

Discussion of Major Findings

1. Feminization of caregiving and ageing of the caregiver: Females and older persons (56 year and above) prevailed as the primary caregivers. Older female caregivers were likely (p<0.05) to have heavier and long years of caring involvement. In particular, female caregivers who were spouse or parents of cared-for person were likely to report higher frequency of personal problems due to the caring work.

2. Weak informal support network: Support from caregivers' informal support network was low. There were 45.9 percent of the caregivers had only one sibling to help them, while 27.1 percent did not have any family member to help them in their care work.

3. General mental health status and existential well-being of caregivers: Over half (52 percent) of the caregivers felt that their mental health conditions were worse than average or much worse. The findings suggested that the related impairment rate was higher than those reported in previous epidemiological studies. This is an indication of the growing inability of the caregivers to continue in the care involvement, if appropriate help is not forth coming. Although 42 percent of the caregivers reported slightly positive existential well-being scores, another 23 percent felt that their well-being were negative. This, together with their less than promising relationship with their cared-for persons and other family members, tend to suggest a gloomy life for caregivers on the average.

4. The caring dilemma and stress: About two-third (66 percent) of the caregivers had a wish to place institutions, while close to half (47.4 percent) of their caregivers did have such a wish. Apparently, the community based day care service was not so well appreciated by the family caregiver. Furthermore, among those caregivers who had already put their cared-for persons on waiting list for institutional placements, 33 percent of them did not wish to send them to institutions, another reflection of the caring dilemma.

Implications for CBR Practice

1. Building the substance for the informal network: The present study shows clearly that a functioning informal network hardly exists, and the caregiver is practically the only effective player in the so-called informal network. Worse still, informal network resistance is taking a toll on the psychological well-being of the caregiver. Effective community based rehabilitation policies should promote a collective responsibility which protects the welfare of the vulnerable group, as well as supports the family caregivers. Concrete measures to develop the helping substance of the informal network should include: a. tangible help to the caregivers; b. setting up of self-help groups in the

neighbourhood for sharing of emotional support, as well as practical knowledge and skills in rendering effective care; and c. different forms of respite service so that the caregivers can have breaks in their life.

2. Dealing with the gender biased caregiving role : CBR should be aware of unduly reinforcing the women gender biased caregiving role. CBR practice should involve the whole family, including as far as possible the immediate support network in working out a balanced involvement in continued caregiving.

3. Reforming formal day care services: Over half of the caregivers in this study considered the help by formal social services not satisfactory and inadequate. The problem is that such services are mostly not home-based or appropriate to the long-term care needs of cared-for persons at home. For example, home help services can only meet the meals-on-wheels needs of such dependent members in the community but not their long-term personal nursing and cleansing needs. Formal day care services should therefore organize to become user friendly, particularly to those assuming dual role as the caregiver and the breadwinner, so as to change their preference for institutional placement. For example, day care organizations may have to consider flexible hours of operation on weekdays and holidays, as well as to minimize travelling time of the caregivers. Such changes would unavoidably incur additional resources, but the increase would certainly be offset by corresponding decrease in demand for the more costly institutional services.

4. Empowering caregivers: The voice of family caregivers is rarely heard in policy debate forums. When they speak, they use to speak on the special needs of their cared-for persons. The caregivers should be empowered to adovate their rights of choice and their legitimate demands for adequate support to fulfil their caring roles. They should not be soley bounded by normative obligations without realistic help. The ultimate goal is for caregivers to find a sense of fulfilment and well-being from caregiving, so as to replace the sense of disruption in personal, family and social relationships.

5. The role of CBR in urban cities: CBR projects are introduced only recently in urban cities, where there is already a proliferation of usually uncoordinated formal services. While CBR is not expected to duplicate the work of other formal services, they can perform the role of a co-ordinating unit at the neighbourhood level for all available community based services. So that the caregiver is required to apply to only one office for comprehensive and individualized help and support. The CBR co-ordinating role should attempt to achieve a seamless networking among formal services, and between formal and informal support. The

CBR team should also carry out community development functions with a dual focus, i.e. community and family foci. The community-focused function is to mobilize and develop local leadership to support community based disability measures, to organize public education programmes and facilitate interfacing between specialist rehabilitation organizations and general social services organizations. The family-focused function is to render care management services so as to facilitate and support the family caregivers, to enlarge their informal support networks, and to assist the family in an equitable division of responsibilities in care work.

Conclusion

While generalizability of the findings should be interpreted with care because of the limitations in the sampling methods, the present study has contributed to understand the complex factors affecting the caregivers in providing quality and long term care. It is clear that the future of programmes and policies concerning CBR and formal support services relies on the development of an effective informal caring networks, as well as a seamless interface between the informal care sector and formal care services in the society.

References

Helander, E. (1992). Prejudice and dignity: An introduction to community-based rehabilitation. New York: United Nations Development Programme.

Helander, E., Mendis, P. Nelson, G. and Goerdt, A. (1989). Training in the community for people with disabilities. Geneva: World Health Organization.

ILO, UNESCAP & WHO. (1994). Community-based Rehabilitation for and with people with disabilities, 1994 Joint Position Paper.

International Labour Office Regional Office for Asia and the Pacific. (1994). Towards equalizing opportunities for disabled people in Asia: A guide. Bangkok: International Labour Office.

Kwok, J. & S. Purves (eds). (1992). Proceedings of Asia-Pacific regional seminar on urban and rural community based rehabilitation. Hong Kong: Rehabilitation International Regional Committee on Asia and the Pacific.

Regional Inter-agency Committee for Asia and the Pacific, UNESCAO (RICAP). (1997). Understanding Community-based Rehabilitation. Paper adopted at the RICAP meeting held in May 1997. Bangkok.

United Nations Economic and Social Commission for Asia and the Pacific (UNESCAP). (1989). Community-based disability prevention and rehabilitation: Guidelines for planning and management. New York: United Nations.

ASIA & PACIFIC JOURNAL ON DISABILITY

Vol.1, No. 1, September 1997

Published by the Asia and Pacific Regional Committee of Rehabilitation International (RI) and the Regional NGO Network (RNN)

Table of Contents

Effects of Rehabilitation on the Family

The patient's family plays a vital part in the rehabilitation process. One of the most important factors in the patient's recovery is family involvement and support.What are the possible effects of disability on the family?Family members are affected by the patient's disability, and, many times, become co-managers of the patient's care. They may experience many changes as a result of the patient's disability. Family members often join the patient in a period of grief caused by a loss of function. Severe injury, chronic disease, or disability may mean a change in family roles. For example, a housewife may need to return to work and become the breadwinner after her husband's disability; a son may need to adjust his work schedule to help care for an elderly parent. These changes can cause stress and conflict within the family. Financial problems due to medical bills or unemployment can occur, adding more stress on the family. Changes in living arrangements, childcare issues, and community re-entry can all pose new problems for the patient and family.

By working together with the rehabilitation team, the patient and family can help reduce some of the adverse effects of disability. This can be accomplished by:identifying the adverse effects of disability within the family. working together on realistic solutions. participating in family education and counseling. planning for discharge and community re-entry.

Why is family support important?Family acceptance and support can help a patient deal with issues related to self-esteem and self-image following disability. Positive attitudes and reinforcement from loved ones often help the individual work towards recovery. Family participation, flexibility, and open communication can overcome many barriers associated with disability. Families who inspire hope can help the individual to adjust and become more confident in his/her own abilities.

Community Re-Entry

One of the main goals of rehabilitation is to prepare the patient for life after discharge. This includes the following:adapting to living with a disability promoting independence planning for a safe and accessible environment

Community re-entry plans are individualized and are based on the patient's physical abilities and needs. Both the patient and family should be involved in planning re-entry into the community.

Many times, adjustments and modifications need to be made to help a person with a disability function independently. This may involve, but is not limited to, the following:home - installing wheelchair ramps, raised toilet seats, or handrails on stairways

school - special computers or adaptive equipment to allow for alternative means of communication

work - new job skills, job placement, and vocational counseling

recreational, social, or sports activities - mobility in public places such as restaurants, churches, or stadiums

transportation - getting in and out of a car or bus, or installing special hand controls or lifts

Rehabilitation team members and community agencies often work together to help people with disabilities succeed. By Lauren L. Lerner, MD

From the chilling moment that the unfamiliar voice on the telephone informs you “I’m sorry, but there’s been an accident,” the family becomes involved personally and completely in brain injury management and rehabilitation. Starting immediately after the injury, the trauma team will perform interventions requiring consent by the family. Family members will seek and receive a great deal of information and data regarding the nature of the injury, treatment options and prognosis. At this point, the family may feel ill prepared to absorb all of the technical information. To combat these feelings, families should start compiling written information and reports—an activity that often proves beneficial later.

If the person with TBI is awake and conscious, the physical presence and support of the family is of immeasurable value, simply by providing familiarity and orientation in an otherwise foreign and frightening environment. Reassurances and affection can be calming, and family demonstration of support of treatments can reduce fears in the individual with TBI.

Ideally, rehabilitation interventions to prevent complications such as contractures and decubiti (i.e., pressure/bedsores due to prolonged pressure against an external object such as a bed, wheelchair, cast, splint) will be initiated on the first day. This also will serve to introduce the family to the concept and goals of the upcoming rehabilitation phase of injury management. The family will need to learn quickly the location of accredited, specialized brain injury rehabilitation programs. BIA and its chartered state affiliates can be invaluable sources of information regarding community resources.

Upon selection of and transfer to a comprehensive brain injury rehabilitation program, the family will be called upon to provide background information on everything from prior interests to favorite foods, from prior academic/vocational performance to personality traits. The rehabilitation team relies heavily on the family of the individual with TBI for a myriad of tasks such as the procurement of family photo albums during treatment of memory deficits. At all times, the family will be called upon to be supportive of the rehabilitation program and its methods. Although at times overwhelmed by their own fears and frustrations, family members should bring their list of concerns to the appropriate hospital personnel or rehabilitation physician, as well as take advantage of the availability of psychological counseling services and family conferences. Seeking out assistance which can relieve their own concerns allows family members to assist the rehabilitation team and their loved one, rather than fuel the patient’s frustrations with their own. To this effect, an important goal in

any successful rehabilitation program is to help and support the family members as they adjust to major changes brought about by their loved one’s TBI.

Depending upon the nature and severity of the injury, and as the individual progresses in the program, there will be opportunities for hands-on family instruction. This type of instruction may include techniques for performing tube feeding, passive range of motion and/or bowel and bladder management in the individual in coma. An individual with a severe TBI but who is conscious may utilize techniques for redirection and orientation, as well as physical assistance for transfers or gait. This hands-on education can help families better understand the care that is required and get them started planning for the return of the individual to the home and community environment.

Depending on the relationship—whether the person with TBI is a parent, spouse, child or a more distant relative—there will need to be accommodations for the person to resume his/her pre-injury family role as much as possible. A wide variety of issues, such as wheelchair accessibility, sexuality concerns and parenting challenges all will have to be addressed. Once again, this illustrates the importance of the family establishing good rapport and communication with the rehabilitation team who can provide guidance in these efforts.

Prior to discharge, key family members will have spent a great deal of time speaking with doctors, therapists and nurses, as well as reading TBI-related literature and other resources. Hopefully, the family members will have been introduced to support groups and the appropriate community resources. Additionally, many family members may be expected actually to perform basic medical procedures such as suctioning or tube feeding, thus assuming the new and critical role of “caregiver” or “care provider.”

Once the long-awaited discharge day arrives and the individual with TBI is allowed to return home, a new journey begins for the family. As the interaction increases from visiting hours to 24-hour care, family expectations may become more realistic. Not only is the family expected to fulfill caregiver functions, but they also must act as impartial observers and report any new progress, problem or change to the appropriate medical and rehabilitation personnel. After discharge, family members must coordinate outpatient services, schedule medical and therapeutic appointments, arrange for appropriate transportation and monitor medications. Now that the family member is home, it is very important the family remains current regarding the person’s expanding abilities, so that appropriate balance is maintained between

providing adequate supervision and assistance and allowing him/her to be as independent as possible. Additionally, the family should continue to maintain contact with support groups, psychological counseling and other community resources, all of which can help reduce feelings of isolation and provide practical information.

Throughout the next year or so, and as the person with TBI improves, issues of academic re-entry or vocational rehabilitation will need to be addressed. Eventually, the progress of the individual with TBI will slow down and even plateau. Hopefully by then, the family will have reorganized and/or established a new system to accommodate successfully the long-term needs of the individual, while still allowing maximal levels of independence in the least restrictive environment.

In summary, the family plays a major role in the management of a person who has sustained a TBI. Although these demands on the family can be frustrating and anxiety-provoking, the family always should feel free to seek the assistance and support of the rehabilitation team to provide education and training at any point in the process. After all, the love, support and reassurance that a familiar family member provides to an individual with TBI are unique and irreplaceable adjuncts to therapy.

Lauren L. Lerner, MD, is a physician specializing in physical medicine and rehabilitation. She is the Medical Director of the Brain Injury and Spinal Cord Injury Programs at HealthSouth Sunrise Rehabilitation Hospital, and Medical Advisor at The Bridge, both in Ft. Lauderdale, FL.

Family Plays Critical Role in Stroke Recovery

Many high profile Americans have experienced stroke episodes - actors Kirk Douglas, Robert Guillaume, and Patricia Neal; entertainers Quincy Jones and Gene Kelly; Hugh Hefner; and writer Ray Bradbury. Quick medical intervention and rigorous rehabilitation helped these people and many more to return to their chosen professions.

For the 700,000 Americans who experience strokes each year, time is of the essence when it comes to treatment – so much so that health practitioners are now referring to strokes as "brain attacks" to emphasize the importance of getting medical help right away. Recent research has shown that quick intervention dramatically improves a patient’s recovery.

But equally important in a stroke patient’s recovery is early rehabilitation and a complete understanding of and commitment to the rehabilitation process. Ideally, this means working with a physical

medicine and rehabilitation (PM&R) physician, also called a physiatrist, to design an individualized recovery program.Early Rehabilitation

"Stroke recovery begins immediately and takes place over a long time – not just during a hospital stay or physical rehabilitation session," says Dr. Steven Flanagan, vice chairman, department of rehabilitation medicine at The Mount Sinai School of Medicine. "It is extremely important for people to begin as soon as possible and to then continue exercising beyond their rehabilitation stay."

After patients are treated for a stroke, their typical initial rehabilitation program will last 2-3 weeks depending on how severely the stroke disabled them. This program is critical to the patient’s long-term recovery and well being.

A PM&R physician will evaluate not only the negative effects of the stroke but also the patient’s pre-attack status taking into account their physical abilities, emotional state, family support, education and even spiritual resources. This in-depth personal understanding allows the PM&R physician to create a comprehensive recovery program with physical therapists, speech therapists, psychologists, and social workers.

"PM&R specialists provide the overview. Rehabilitation is a team sport with the patient and family included first and foremost. The team may also include physical, occupational, and recreational therapists, speech language pathologists, psychologists and social workers. The physiatrist has the responsibility to direct and coordinate the team," says Dr. Charles E. Levy, system chief of physical medicine and rehabilitation services for the North Florida/South Georgia Veterans Health System. "In this active partnership we strive to find out what motivates the patient and how we can use this to his or her benefit."Different Strokes

Flanagan stresses that every stroke patient is unique as is every brain attack and the resulting deficits that occur. Therefore every recovery is unique. Typically, after a PM&R physician evaluates a patient, the goal is to help clear as many of the obstacles as possible to his or her recovery so the patient can focus on returning to the daily activities that he or she is able to perform.

"Stroke happens. That’s the bad news," says Levy who is also an assistant professor in the department of orthopaedics and rehabilitation at the University of Florida College of Medicine. "The

good news is there is great potential for the brain to recover from stroke. With diligent rehabilitation, those prospects improve."Family Support

Both specialists quickly point out that one of the most critical elements in a patient’s rehabilitation from stroke is the strength and commitment of their primary support system – usually their family.

"Stroke often threatens our definition of ourselves by forcing us to rely on others to complete everyday activities. Family acceptance is crucial in helping a person understand that just because he or she needs assistance is no reason to feel ashamed or unworthy. If we live long enough, all of us can expect that our skills will diminish. Ultimately it is who we are, not what we can do that is important," explains Levy.

According to Levy, family members can be particularly helpful when it comes to identifying the best ways to psychologically motivate the patient. Family members may also be particularly adept at interpreting communications and signs when speech impairments are present. "Family members know the patient better than we ever can. We try to involve them as much as possible. Their commitment often makes a world of difference in terms of recovery."A Helping Hand

Since the vast majority of people recovering from stroke will be cared for by family or loved ones, part of the rehabilitation program requires educating those caregivers on how to assist with necessary tasks, such as:

Transfers - from bed to wheelchair, wheelchair to car, etc.

Rehabilitation exercises to strengthen and stretch weakened muscles

Organizational strategies – such as laying clothes out in order

Empowerment tips – such as verbal cues, a gentle inquiry rather than an order

Food Preparation – because swallowing problems are common

Depression is more common in patients recovering from a stroke than many other diseases with similar deficits, although it is not completely clear why this happens. Depression can rob a person of their willingness to work towards recovery. This can be very damaging. Motivation and a positive attitude are key to obtaining an optimal level of recovery. "Obviously family are a great resource," reports Levy. "It is

not uncommon for the patient to report that everything is fine only to have the spouse vigorously nod her head ‘No!’ It may the spouse who alerts us to the real problems at home. Together we can begin to address the physical, medical, thinking and emotional problems so common to those living with the effects of stroke."Brighter Future

"This is a very exciting time for us – five to ten years ago the consensus was not much could be done to influence the limited natural recovery from stroke," says Levy. "Now we’re making enormous strides in helping more and more people enjoy normal daily living." For example, one of the new treatments being investigated is constraint induced movement therapy where intensive training of the weak side (5-6 hours per day for two weeks,) can result in dramatic recovery of arm and hand skills. Investigations of different medicines to encourage recovery is under way. New imaging techniques are allowing us to see how the brain reorganizes after a stroke to regain lost abilities. Promising new strategies using body-supported treadmill training are helping to restore walking.

Home| Keynote Speeches| Workshop Papers| Other DocumentsInvolvement of Family in the Comprehensive Rehabilitation of A Child With Visual Impairment Abstract Submitted by Late Madhukar Suryavanshi, Project Coordinator, NAB Rural Activities CommitteePaper Written and Presented by Mrs. Nandini Rawal, Secretary NAB RAC in Madhukar's memory

" Parents may find comfort, I say in learning that their children are not useless, that their lives, limited as they are, are of great potential value to the human race. We learn as much from illness as from health, from handicaps from advantage- and indeed perhaps more." Pearl S. Buck.

INVERTED PYRAMIDS

No one plans to have a child with disabilities. The birth of a child with a disability is an unanticipated event. No family- regardless of race, ethinicity or socio economic status- is immune to childhood disability, yet almost all are poorly prepared to cope with its occurence. (Selgiman & Darling)

The family is the first social unit of the child and its first center of learning. A professional may initiate, intervene or plan a rehabilitation

programme but the child remains in the fold of its family. It is thus imperative that the family is involved in the comprehensive rehabilitation right from day one__

The parents, grandparents, siblings and the typically extended family are a vast pool of talent that lies underutilised at present. The rehabilitation scenario largely in the developing world is of a"top-down" model or that of an "inverted pyramid" with medical and rehabilitation professionals "prescribing" the treatments and actually"giving" it to the person with a disability without involving the family. This rehabilitation model is top heavy with a huge team at the top and very few or no workers at the grass-root level. The person with the disability is surrounded by a tight chain of rehabilitation workers with parents generally neglected. This has resulted in:

- isolation of such a child from her family - a withdrawal of parents from the child and her development - ignorance and apathy of the potentials of this child - mystification and fear about the disability and its impact - polarisation of the child with the disability from the "normal" family. - Institutionalisation of services.

A state of limbo persists after the person with the disability has "completed" her rehabilitation training. The family is unable to readjust to this person and understand her needs. The rehabilitation agency "disappears" after its role is over leaving the person with the disability to flounder in an atmosphere which has not been cultivated or sensitized. Rehabilitation programmes thus do not become self-sustaining nor do they get internalised in the community. Rehabilitation professionals are "outsiders", however close, sensitive and caring they may be, they have a limited role to play with a particular child. Their job is to move on to the "next" child in need.

BRIDGES INTO THE FAMILY

All over the world, awareness has been generated that there have to be bridges into the family, community and the professionals. If one has to make use of such a priceless and vast resource the family as the primary care giver of the child has to be roped in.

Untill recently, professionals in the rehabilitation field took a primarily client centered approach with the focus on the individual's handicap. There is now a realization among specialists that these individuals cannot be viewed as isolated entities. They need to be seen within their familial and societal contexts because of the reciprocal and interdependent relationships between such individuals and their

families, and the influence that the family exerts on their overall development. Since the family can play a vital role in supporting such a member, its direct involvement in the rehabilitation process as an active partner in the multidisciplinary team is increasingly considered necessary. Moreover, it has been accepted that the overall goals of rehabilitation are the attainment of integration and equalization of opportunities by them in every facet of daily life, including a share in the normal social life of the family and the community.

The interaction between professionals and parents is often marked by confusion, dissatisfaction, disappointment and anger. All research information, however, proves that these are the initial stages which soon are transformed into mutual respect and give and take.

Effective partnership between professionals and families would depend upon

- Patience, sympathy and openness on the part of the helpers to understand families perspective - Doing away with the concept of withholding of information concerning a disabled person - Discretion in discussion with family - Involvement of parents in planning and decision making

For the parents to be true partners in rehabilitation,it is essential that the professionals accept that:

- The parents have a right to be involved in the planning, as the child is their ultimate responsibility. - That the home is the large canvas of the child's life as she spends the major part of her life there. - That parents are aware of the problems of the child but not able to gauge the impact of disability. - Parents have a major contribution to make in the life of the child. - Professional efforts would not yield full results without family involvement. - Parents have a right to know the various range of services and options available to the child and the right to choose the most practical one. For the family to be successful in the rehabilitation process of the disabled person, it is essential that:

- There is demystification about disability. The family does not get confused and bogged down by labels and jargons but are told about the impact of the disability and the abilities of the child.

- The family as a whole decides to put itsbest foot forward to learn, to experiment, with ideas and understand, accept and love the family member with a disability. - The disability is accepted by one and all and it is acknowledged. - The family is open to ideas from the professionals. - That the family is made aware of rehabilitation methods and avenues open to the child. - Thefamily members are present in decision-making process. - The family members faithfully adhere to their part in the rehabilitation of the child.

The Family as Partners in Rehabilitation of a child with Visual Impairement

The family members, relatives, friends and the community at large must be involved in the rehabilitation planning of the child The family is the first and main focal point and if it is roped in, counselled, trained and convinced, it can spread the message and convince other members of the community. Any technical and professional training by the professionals can be reinforced by family and this change can be sustained. The family can inturn motivate and influence the community to accept all persons with visual impairment. This change would be inbuilt, self sustaining and would not disintegrate after the professionals leave the scene. Various benefits of specialized training by professionals would be absorbed by the family. They would accept the person with disability and treat her with respect. This change would slowly percolate and become a way of life in the community.

The model below gives an illustration of how professionals and parents are two sides of one coins and both are interdependent for the effective integration of the child into normal life. For the parents to be ultimately responsible, it is essential that they are trained and sensitized. Figure I gives the parental training model and Figure II gives the interaction of both.

Other practical examples of family involvement are grandparents providing respite care to the parents of the person with visual handicap, sharing chores to provide relief to the parents; siblings providing help in education, participation in play activities and participation in peer group activities and relatives involving the visually impaired person in the family functions and economic activities.

The parents who are aware and trained can be effective in training other parents having disabled children. They can form parents groups, self-help groups for their child. The parents and the family members

can gain knowledge and skill and become full-fledged teachers or back-up or support teachers for their children.

CONCLUSION

To acheive comprehensive rehabilitation and sustain it once the professionals and NGO's leave the scene, it is imperative to wake these families from stupor of their conventional believes, train them to deal with this phenomena, guide them to search out appropriate education and training, from the various facilities available for their child so that she can become self-reliant, contributing member of the family and consequently the community. With the limited human and other resources available with the professionals working in this field, if the families can take over from them at a particular stage, it would leave professionals more time and energies to apply the same elsewhere with the satisfaction and knowledge that their earlier work will continue with the help of the families and the communities.

REHAB AGENCY - BECOMING ONE, STAYING ONEBy Larry Fronheiser, President

Since the passage of the Balanced Budget Act in the summer of 1997, perhaps the most frequently asked question of me as president of NARA is, "What is the future of rehabilitation agencies?" That question was also brought up frequently at our most recent conference in Washington, DC. I have basically given the same advice to all existing and potential NARA members when asked, and I will try to articulate those comments to you in this issue of NARA News.

To my knowledge, there are currently no regulations being considered by HCFA that would eliminate certification of rehabilitation agencies in the Medicare program. In fact, rehab agencies have been "grouped" with other outpatient physical therapy providers (OPTs) in most of the Balanced Budget Act provisions. In my opinion, this grouping is probably good because it sends the message that, until and unless Congress and/or HCFA decide to eliminate outpatient providers in general, it is unlikely rehabilitation agencies would be targeted. Therefore, I think we can conclude our status as certified rehabilitation agencies, within the Medicare program, is relatively assured but not guaranteed.

If one is already a rehabilitation agency, then the investment to become one is a financial expense of the past and should not necessarily be considered as an unnecessary expense for the future.

Maintaining rehab agency status is neither an administrative nor financial nightmare for most existing agencies. True, there are additional accounting expenses in the preparation and filing of a cost report. In fact, it is very likely the cost report system is going to continue over the near term. However, it appears to me the expense alone is not significant enough to warrant a decertification process in order to save those financial costs. In my mind, the name of the game in the future is to maintain flexibility. This concept has merit if you consider the following: Rehabilitation agencies have "credentialing" status, i.e., they are certified by the Medicare program and, at least theoretically, are visited by state surveying entities on an annual basis. This credentialing process gives both quality and marketing advantages to those businesses who use credentialing as a competitive advantage or as a mechanism for certification for many managed care organizations.

While it is anticipated that there may be changes in the regulations for physical and occupational therapists in independent practice (PTIP/OTIP), the fact remains that today neither of those entities can provide additional services or function in multiple clinics without being on-premise during the treatment of a Medicare patient. Even if the on premise rules are changed, the ability to provide multidisciplinary services is difficult for both PTIPs and OTIPs.

Many states tie reimbursement for auto coverage and workers' compensation to Medicare rates. So far, it has been a financial advantage in many states for rehabilitation agencies to receive a higher rate of compensation in those cases.

The home care industry is in a state of flux. It is very possible many small home care agencies will be unable to service their existing patients and the ability for a rehab agency to provide home care on a direct bill basis is still viable.

It is also possible that many smaller skilled nursing facilities may decertify from the Medicare program when they recognize the difficulties of the prospective payment system and consolidated billing. Rehabilitation agencies will be in a significant position to continue billing directly for those patients, serving as an outside contractor for the nursing facility that chooses to decertify.

The assisted living environment is a growing market throughout the country. Many of these facilities are not associated with y certified SNF and, therefore, require therapy services from an entity that is capable of billing the Medicare program. Rehabilitation agencies are clearly in a position to provide that service.

Many of you may have thought of other competitive marketing reasons to remain a rehabilitation agency; those nonmembers who are reading this article may consider rehabilitation agency status for one or more of the above reasons. Many of these same reasons apply to comprehensive outpatient rehabilitation facilities (CORFs), and many CORFs are currently joining NARA. For current NARA members, I would encourage any of you who are considering decertification to at least consider all of these elements before making the final decision.

As always, the American business community finds ways to deal with adverse situations. Using the old cliche "There is no such thing as a problem- only a new opportunity," I would encourage all of you to consider the above reasons as we move forward as NARA members with our continuing motto of "Strength through professional unity." As always, if anyone has any questions or comments regarding these opinions, do not hesitate to call me at any time.

Dr. C.Edwin Vaughan, Professor of Sociology at the University of Missouri at Colombia An Organizational Approach to the Evaluation of Rehabilitation Outcomes: Assessing Three Private Rehabilitation Agencies by C. Edwin Vaughan, Ph.D. ********** From the Editor: The following pilot study was conducted in1997 and early 1998 by Professor C. Edwin Vaughan for the U.S.Office of Education. Those who have attended annual conventionsof the National Federation of the Blind or who are long-timereaders of the Braille Monitor are familiar with the manypersonal stories and anecdotes told by blind people lucky enoughto have been students at one of the three private adultrehabilitation training centers conducted with Federationphilosophy as the basis of the program. Here, however, is a lookat these three programs and the ways in which they differ fromtraditional training facilities. Dr. Vaughan also suggestsadditional areas for fruitful investigation. This is what hesays: **********1. Background

There are approximately one hundred residential programs forpersons who are blind in the United States that provide

vocational, pre-vocational, and independent-living services toconsumers of the Title I Vocational Rehabilitation ServicesProgram. A conservative estimate would suggest that in the lastdecade at least 30,000 clients participated in these residentialprograms--ranging from three- to nine-month enrollments. The mostfrequently stated goal is preparation for competitive employment.Other goals include preparation for additional education(including higher education) and independent living. Theseresidential programs are relatively expensive, frequently costingfrom $2,700 to $3,000 or more per month for each student. Despitethe economic cost and the human effort, there is little evidencethat these programs have produced a significant improvement inthe level of blind people's participation in the labor force.

During the period 1984 to 1988 three new residentialrehabilitation centers were created by members of the largestconsumer organization of blind people--the National Federation ofthe Blind. The reasons for developing these three residentialrehabilitation centers was an awareness of the limitations ofexisting programs. Existing agencies were not, in the opinion ofthe members of this consumer organization, educating theirstudents adequately for a life of independence, self-reliance,and full participation in society. These three agencies haveflourished and are attracting clients from all over the UnitedStates and from several other countries.

Those in the field of blindness rehabilitation frequentlydiscuss program evaluation; a fairly complete bibliography wascommissioned by the National Accreditation Council for AgenciesServing the Blind and Visually Handicapped. Most traditionalapproaches to evaluation consider the staffing and other agencyfeatures and examine client progress in learning particularskills. No research has been done, however, comparing agencyeffectiveness. No evaluation procedures have effectively studiedthe holistic effects on the individual in terms of alterations inhis or her subsequent life career.

Because of the public monies expended and the wasted humanresources, it is important to learn whether these three agencies are more effective than others. As a first step this pilot studywill analyze the philosophy, curriculum, and staffing that areall ingredients of the comprehensive rehabilitation experiencewhich these agencies claim is quite effective. In this pilotstudy I interviewed representative graduates to learn, from theclient perspective, the strengths and weaknesses of theseprograms.

**********2. Objectives

1. Describe the three residential programs in terms of theirphilosophies, goals, curricula, personnel practices, services,and consumer outcomes.

2. Identify organizational features (philosophies, goals,curricula, personnel practices, and services) associated withhigh levels of consumers' vocational/educational success andindependence.

3. Analyze the relationships between agency goals andpersonnel practices.

4. Analyze the relationships between organizational goalsand the curriculum provided to the consumer.

5. Establish baseline data for judging the future success ofthese agencies. **********3. Procedures

1. I visited each of the three centers--the Louisiana Centerfor the Blind (Ruston, Louisiana); the Colorado Center for theBlind (Denver, Colorado); and BLIND, Inc.--Blindness: Learning inNew Dimensions (Minneapolis, Minnesota).

2. I reviewed relevant documents at all three locations,including annual reports and contract proposals.

3. I interviewed each director, almost all members of thestaff, and several members of the boards of directors of thethree agencies.

4. As a participant/observer I visited several classes,including mobility, independent living, computer skills,industrial arts (woodworking), and group discussions about thephilosophy of blindness.

5. Throughout my site visits I talked informally withclients.

6. From lists of graduates within the last twelve months, Iselected nine students for extensive open-ended, unstructured,in-depth telephone interviews. They comprised a purposive sample-

-generally reflecting the gender, ethnic, and economic diversityof the client group. From these interviews I tried to learn, fromthe client's point of view, aspects of the rehabilitationexperience associated with the clients' subsequent occupationalsuccess and their overall satisfaction with the rehabilitationprogram.

7. From information gathered in conversations and interviewswith students and site observations, I conducted a second roundof interviews with the three directors. **********Philosophy

The philosophy behind the programs of the three centers, forthe most part, is similar.

(1) None of the three is associated with a shelteredworkshop. This physical separation from sheltered workshopsallows students to explore all employment options thoroughlywithout the appearance of being directed into a shelteredenvironment.

(2) All three centers address what Diane McGeorge (Directorof the Denver Center) referred to as "the real issues" ofblindness. These issues include what a person thinks of himselfor herself and what ordinary people and some professionals thinkabout blindness. To repeat a slogan frequently heard at theseagencies, "We are changing what it means to be blind." Moststudents come from backgrounds of overprotection and have seldom reflected critically on their own goals and potentials. All threeorganizations provide experiences to challenge limiting self-concepts.

(3) All agree that programs must be extensive andcomprehensive. Everything from attitudes to required skills mustbe addressed before an individual can participate fully insociety. Students do not come to these residential rehabilitationprograms to learn only a particular skill such as mobility orcomputer use.

(4) All three programs require sleep-shade training.Residual vision is to be used, but only after the skills ofblindness have been mastered.

(5) All three continually stress positive images ofblindness--"There is nothing wrong with being blind." If a

student becomes skilled at alternative techniques to vision,blindness can be reduced to an inconvenience. You should make thebest of what you have and reject society's negative images aboutblindness.

(6) Whenever possible, alternative techniques should betaught in real-life situations. For example, to teach cane travelas technique is not enough; the student is learning cane travelskills in order to go somewhere. The goal for students is thatwhen they have become proficient in the use of alternativetechniques and develop a positive self-concept, they move on topursue vocational training, post-secondary education, employment,or a greater degree of independence.

(7) A wellness model is stressed. Students should focus ontheir potential, not their limitations. There is the expectationthat with appropriate training most blind people will succeed intheir chosen fields.

(8) Rehabilitation is viewed as part of a lifelong process,and students are expected to begin a long-term involvement withconsumer organizations. In the case of these three agencies thepreferred consumer organization is the National Federation of theBlind. The purpose is twofold: 1) to give the blind person anongoing support group which will continually reinforce a positivephilosophy about blindness and provide encouragement whendifficulties emerge and 2) to involve the students in acommitment to pay back or contribute to the ongoing organizationand to the lives of other blind people. The staff even refers tothe desire of student outcome as a spiritual experience;rehabilitation will be so transforming you will want to sharewith others the aspects of your newly found independence and morepositive self-image. One staff member in Louisiana mentioned thatthe staff communicates this urgency to getting on with thetransforming of one's life.

Joanne Wilson, Director of the Louisiana Center, expandedthe religious theme, describing the rehabilitation experience as somewhat like a traditional "religious revival." After theinitial intense transforming experience some people "backslide." By becoming involved in an ongoing organization with positiverole models and a positive philosophy, the individual cancontinually renew the original experience. The traditionalcommunity-based attitudes about blindness are so pervasive thatit is easy once again to internalize negative self-images or toaccept traditional low expectations of what a blind person can

achieve. To quote Ms. Wilson again, "We have to teach thestudents to give back to something else--if we are going to bewhole people, we cannot just take from this world, but we have togive back. This is particularly important for blind people; it isso easy never to give anything back because people have so oftengiven everything to you--paid for your coffee or taken care ofyou through family, welfare, etc. The involvement in the consumerorganization helps sustain the social movement which producespublic education, legislation, litigation, new employmentopportunities, etc., which may in turn help the individual inadditional ways." Although encouraged, students are not requiredto join the National Federation of the Blind. **********Curriculum

The three centers attempt to link philosophy torehabilitation outcomes through both curriculum and staffinvolvement. For this discussion I have included the physicalenvironment as part of the environment.

(1) All students in the residential rehabilitation programare encouraged to live independently. Furnished apartments areprovided for students, usually two students sharing a two-bedroomunit. Students are responsible for cleaning the apartment and forcooking and preparing their own food. In all cases theseapartments are considerably removed from the main rehabilitation facility. Students are required to work out their owntransportation--usually public busses.

(2) All instruction is linked, as much as possible, to reallife situations. If a student needs to open a checking account ormake an appointment with a beauty shop, the task becomes part ofmobility instruction. Students will not simply learn to cook;they will learn how to prepare a meal for all their fellowstudents at the center.

(3) All three centers include at least four hours each weekin what is referred to as business seminars--the business ofliving. These are discussion groups involving both students andstaff. They are intended to help students examine their ownattitudes about blindness and to understand the reasons for thesocial and instructional arrangements they are experiencing. Theintent is to change attitudes and broaden perspectives.

(4) There is a distinct approach to mobility instruction.Cane travel instruction is extensive throughout one's time at any

of these three rehabilitation centers. At some traditionalcenters cane travel will be taught only one to four months. Onlythe basic techniques can be learned in this brief period;becoming a confident and safe traveler takes much longer. RussellAnderson is a travel instructor at the Minnesota Center. Heprefers the word "travel" to "orientation and mobility." To him,travel means learning to go out, to go somewhere safely and onyour own.

All three centers strongly recommend the use of the longlightweight, carbon-fiber cane. Not only is this cane a symbol offreedom, but it also enables the traveler to explore the travelsurface one stride in advance of traditional shorter canes.According to the instructors this cane has many other advantagesthat go beyond the scope of this report.

(5) The curriculum includes social experiences that moststudents have never imagined. All three centers encourage theirstudents to attend state and national conventions of the NationalFederation of the Blind. In this context students learn socialskills, self-reliance, and independent travel in quite diversesettings. In 1997 all three centers sent students to attend theNFB convention at the Hyatt Regency Hotel in New Orleans, a five-day event with more than 3,200 registrants. To avoid criticismfrom funding sources, the Colorado, Minnesota, and Louisianaaffiliates of the NFB provide scholarships for studentattendance. Funds from the state agencies sponsoring each studentare not used for this purpose.

(6) The student experience is based on more than an eight-hour day. The positive philosophy is taught and lived in atwenty-four-hour environment. Students learn from positive rolemodels: roommates, instructors, citizens in the community, andboard members. The staff accompany the students on a wide arrayof field trips. These field trips are intended to providestudents with experiences they had never imagined or thoughtpossible. These include wilderness camping, rock climbing, whitewater rafting, cave exploring, skiing, and attending festivalssuch as Mardi Gras. The intent is to increase self-confidence andpromote a more positive self-image.

(7) Except for discussion groups much of the instruction isone-on-one. Typically between eighteen and twenty-four studentsare enrolled in the residential rehabilitation program. Thestaff-to-student ratio is usually around 1.5 to 1. All threecenters thought twenty students to be the optimal number. These

numbers are approximate, but below twelve students is lessdesirable because the number and variety of positive role modelsis restricted.

(8) All students are taught Braille without regard toresidual vision. I met one student at the Louisiana Center whowas excited about learning to read--at age twenty-three. He hadexperienced two rehabilitation centers in California, which didnot instruct him in Braille. They tried to use his residualvision without success. Research has demonstrated that studentswho become literate in Braille are far more successful inemployment and independent living than visually impaired studentsnot learning Braille. Braille is an important feature of thecurriculum for education, as is the long white cane fortraveling. Proficiency in both is essential and required.

(9) Students also participate in several additionalcurricular areas, including computer skills, cooking, andwoodworking. These are subjects important in their own right butalso teach independence and self-reliance and provide a broaderperspective on the capabilities of blind people.

(10) As previously mentioned, sleep shade use is requiredthroughout the curriculum. Students are told this before theyarrive, and it is clearly communicated in most brochures andinformational material. All three directors agreed that there isno better way to teach the skills of independent living. Althoughprograms are individualized for each student, all are told beforethey arrive that these programs teach a distinct philosophy aboutblindness.

(11) Students do not pick and choose preferred aspects ofthe curriculum; the training is both intensive and comprehensive.One staff member likened the experience to boot camp. Studentsmust follow all specific rules, or their training will bediscontinued. Students with problems other than blindness, if toodisruptive, will be sent home. **********Staff

(1) All staff members must have been competitively employedbefore being considered for employment in these three agencies.This is an additional dimension to the positive role modeling;students learn from their competent blind instructors about otheremployment opportunities that might be available.

(2) Blindness is not a requirement; however, most of theinstructors are blind. If a competent blind instructor isavailable, this makes role modeling even stronger. At BLIND,Inc., Joyce Scanlan, Director, observed that many students cometo the program initially having more confidence in the sightedmembers of the staff. This quickly changes and bonding occurs.Negative opinions of the sighted staff do not grow, but newlevels of appreciation and respect develop concerning thequalities of the blind staff.

(3) All employees must share in the positive views reflectedin the philosophy of the National Federation of the Blind--otherwise they will not be retained. The agency in Louisiana isthe only one of the three that requires all employees toparticipate in the National Federation of the Blind.

Such personnel policies differ dramatically from thosefrequently seen at larger private agencies. Sometimes it isdifficult--if not impossible--for staff members from moretraditional agencies to express in their behavior theirphilosophy of independence. They may encounter resistance inlarger agencies dominated by sighted or blind individuals withtraditional philosophies or practices involving custodial care.The effort of a teacher to become more effective and be apositive role model can become a threat in the traditionalagency. In fact Scanlan observed that workers in larger centersare sometimes rewarded for their willingness to be dependent uponother staff members. They are rewarded for being led aroundrather than traveling independently because the former maintainsthe status quo. Also in more traditional agencies there is theadditional problem of the accumulation of minimally competentpeople because it is difficult to remove them. According to thepeople I interviewed, learning from teachers who often appear tohave little confidence in other blind people is one of the mostdeadening experiences a student can encounter. Staff members whodemonstrate unnecessary dependence or anything less than thehighest levels of accomplishment are not acceptable in thesethree agencies, where the example and contribution of each personis critical.

(4) Sighted employees undergo extensive sleep-shade trainingas part of their new-employee orientation program. For example,the sighted industrial arts teacher at BLIND, Inc., of Minnesotaspent three months at the Louisiana Center learning the skills ofblindness with the use of sleep shades. Sighted employeesfrequently use their sleep shades as part of the educational

effort to teach a particular skill to a blind student.

(5) Although stated in several different ways, I frequentlyheard employees characterize themselves as believing in blindpeople. The intent of the staff is to accomplish more thanteaching a particular skill. According to Diane McGeorge of theColorado Center, a strong component of success is the commitment of each staff member to the success of each student, along withhigh expectations of what blind people can achieve. The programtries to communicate that clients can take control of their ownlives.

(6) The staff expect self-reliance. Students are expected tolearn to solve individual problems as they arise. At many moretraditional residential rehabilitation centers things are donefor students that are not even considered at these three centers.At some traditional centers I have observed students eating incafeterias rather than preparing their own meals. At one of theother centers blind students raise their hands in the cafeteriaand receive prompt assistance. At another center students caneven request that meals be delivered to their rooms. To the staffof the three NFB-oriented centers, such behavior would be viewedas custodialism. Custodial treatment is detrimental to theacquisition of a positive self-concept and the expectation that ablind person can live independently. **********Social Organization

All three of these agencies began during the period 1984 to1988. Each was established without the assistance of the others.Each is closely linked to the state affiliate of the NationalFederation of the Blind (NFB). Each was started by individualsactive in the NFB.

The NFB has affiliates throughout the fifty states and also in Puerto Rico and Washington, D.C. Each state affiliate isformally linked to the national organization. Each state canpursue its own way of promoting the interests of blind people andthe education of the public about blindness.

Each of these three agencies was begun with the financialassistance of the state affiliates--the NFB of Colorado,Minnesota, and Louisiana. The reason for developing these threeresidential rehabilitation centers was an awareness of thelimitations of existing programs. Existing agencies were not, inthe opinion of these members of consumer organizations, preparing

the students adequately for a life of independence, self-reliance, and full participation in society. They decided tocreate new agencies that would address these concerns bydeveloping a curriculum and recruiting a staff that would embodya more positive view of blindness. I have mentioned these values,curriculum, and staffing patterns earlier in this report.

Each of these centers is a not-for-profit organization, andeach is governed by a Board of Directors. In all cases at leasthalf of the board must be comprised of blind people. The blindmembers of these boards must be competitively employed and activein local consumer organizations of blind people.

For most of the several hundred private blindnessrehabilitation agencies in the United States, board membershipsare based on wealth and social status--to help legitimate theagency in the local community and assist in fund raising. Theseare important issues to these three agencies as well; however,the overriding concern is to have a governing board that issympathetic to and knowledgeable of the philosophies of theseagencies. All board members are expected to be involved in someaspect of the agency's programs. **********Assessing Outcomes

Data to judge one agency or to compare the performance ofdifferent agencies are rare. In a 1991 report BLIND, Inc.,reviewed the subsequent experience of students graduated in theprevious year. This agency focused on outcomes. This helps avoidwasting scarce resources and places emphasis on the frequentlystated goals of the rehabilitation process. In the short run thismeans determining whether or not students have learned valuedskills and attitudes. In the longer view it refers to theconsequences the required skills and attitudes have forvocational success and independent living. For example, BLIND,Inc., in its annual report for 1991 listed the outcome of itsrehabilitation efforts. **********

Twenty-six students participated in the comprehensivetraining program in 1991. Of those, three had not completedtraining. Those who have left the program are doing the following:

10--attending high school or college 6--employed

4--seeking employment 3--living independently (BLIND, Inc., 1991, pp. 2-3)Whatever else the future holds for these individuals, the report suggests that they have not become dependent on the agency andare living independently and continuing their education andemployment. **********Agencies Compared in Minnesota

Data comparing agencies on student outcomes are also rare.The Department of Jobs and Training, State Services for theBlind, contracts with three private agencies in Minnesota toprovide alternative techniques for blind people to pursue theirvocational and rehabilitation interests more efficiently. Theseare Blindness: Learning in New Dimensions (BLIND, Inc.), theMinneapolis Society for the Blind (MSB), and the DuluthLighthouse for the Blind (DLB).

The following charts were based on data collected by thestaff for the Minnesota State Services for the Blind. For thequestion concerning what students did with their lives afterleaving the training facilities, the first chart shows that thedifference in the outcomes for those involved in the threeagencies was great.

Concerning the use of Braille, BLIND, Inc., reported morethan twice the percentage of students using it every week. Morethan 55 percent from BLIND, Inc., reported weekly use, while only12 percent from the Duluth Lighthouse for the Blind did so.Activities for daily living included grooming, upkeep ofclothing, cooking, housekeeping, sewing, shopping, etc.Similarly, for these tasks there were pronounced differencesamong agencies. The Duluth Lighthouse for the Blind was theweakest on all measures, according to the NFB of Minnesotaanalysis of the data.

I have no ready access to additional data that would permit additional comparisons of the type mentioned above. It would doubtless be a sensitive issue in most states. However, the differences describing agency outcomes in Minnesota were so greatthat additional research is justified.. **********

Activity after Training: This bar chart represents the

percentage of graduates from each agency engaged in eachactivity:Employment, BLIND 14 percent, MSB 5 percent, DLB 6 percent;Student, BLIND 43 percent, MSB 14 percent, DLB 11 percent;Planning, BLIND 28 percent, MSB 23 percent, DLB 6 percent;Looking for Job, BLIND 14 percent, MSB 5 percent, DLB 0 percent;Homemaking, BLIND 0 percent, MSB 10 percent, DLB 27 percent;Retired, BLIND 0 percent, MSB 5 percent, DLB 17 percent;Nothing, BLIND 0 percent, MSB 37 percent, DLB 33 percent] ********** Daily Living After Training. This bar chart shows thepercentage of graduates from each agency engaged in the variousactivities charted: Banking, BLIND 79 percent, MSB 51 percent,DLB 50 percent;General shopping, BLIND 79 percent, MSB 51 percent, DLB 50percent;Grocery shopping, BLIND 85 percent, MSB 42 percent, DLB 40percent;Personal organization, BLIND 70 percent, MSB 56 percent, DLB 56percent.] ********** I have no ready access to additional data that would permit additional comparisons of the type mentioned above. It woulddoubtless be a sensitive issue in most states. However, thedifferences describing agency outcomes in Minnesota were so greatthat additional research is justified. **********Interviews with Individuals

I conducted more than thirty brief, casual interviews withcurrently enrolled students in the three agencies. I alsoconducted nine open-ended, in-depth interviews with individualswho had completed the residential programs within the previoustwelve months. Of this group comprised of four women and five menranging in age from nineteen to forty-two years, three werecontinuing their higher education and six were competitivelyemployed.

Disclosure: I am a member of the NFB and am sympathetic toits previously mentioned general goals. I am aware of my ownvalues and likely biases. I think my level of self-understandingand critical reflection enables me to look at these agencies andinterview these individuals in a balanced manner. **********Self-Selection

Before beginning site visits, I presumed the likelihood of asocial network which might recruit clients to these threeagencies. Some critics have argued that these agencies existprimarily to recruit members for the NFB. New members may be oneoutcome, but it does not appear to be an explanation for thelevel of staff commitment and the nature of student responses.

Of the approximately thirty informal interviews, only sixindividuals had previously been involved in NFB localorganizations before attending these three centers. Only one ofthe nine individuals in the in-depth interviews had previousinvolvement in the NFB. Many of them had never heard of the NFBor the state affiliates where these three agencies are located.In all cases current clients are likely to come from the statewhere the agency is located. However, approximately one thirdcome from other states scattered across the United States.Incidentally, there are occasionally students from othercountries; staff from these three agencies have also beeninvolved in transporting their programs and philosophies to othercountries, most recently to Poland.

I repeatedly inquired why individuals selected these threeagencies. The answers were quite varied. Some were referred bytheir local rehabilitation counselors. Others had heard of theseprograms from acquaintances who had either attended or had someknowledge of the agencies. One of my conclusions is thatindividuals do not come to these agencies through an NFB network.Any self-selection process biasing assessment outcomes isminimal. **********In-depth Interviews

Based on my observations at the three sites and my informal conversations with resident clients, I was not surprised that thenine former students I interviewed by telephone were positiveabout their recent residential rehabilitation experience. Allstated that the programs had helped them reach their individualgoals. These goals included greater independence, preparation topursue higher education more effectively, and employment. Thosecurrently employed had received placement assistance from theirrehabilitation center.

In various ways all nine indicated that they had left theprograms with greater confidence in themselves and a morepositive philosophy about their situations as blind people. Seven

of the nine spoke in different ways of the importance of the"unusual things we did." They mentioned doing things that theynever would have thought of previously, such as rock climbing,white-water rafting, and traveling to a distant city toparticipate in a national convention.

Although they expressed it in different ways, all of themthought that the stress on a positive philosophy (through staffexample, other students, and the regularly scheduled discussionsconcerning a positive philosophy) were an extremely importantfeature of their experience. Two individuals stated that, howevergood they were, the specific techniques they learned were not asimportant as the overall impact of the programs on their lives.

Four of the nine students had different levels of residualvision. All valued the sleep-shade aspect of the training. Theyvalued cane-travel training from a blind instructor. This waseven the case for the two individuals who had encounteredblindness within the previous two years.

All of the students valued the independent-living experienceassociated with their residence--having a roommate, beingresponsible for their abode, preparing their food, and havingpersonal responsibility for things affecting their lives. Onementioned that the "bar was placed very high." The staff set highexpectations and worked with each individual to this end. Otherindividuals mentioned the importance of informal groupactivities--the way in which students learned from each other'ssuccesses. Eight of the nine had become active in local chaptersof the NFB. They developed ongoing friendships with theirteachers as well as with other students. They had not been a partof a supportive social network before they came to theseagencies, but following their graduation they continued theirassociation with other blind people sharing a similar philosophyabout blindness.

I had to look hard to find complaints. Some felt that thechallenges in the early part of the rehabilitation process hadbeen too great. However, as they worked through their fears, theyretrospectively felt their anxiety to have been part of an oldself-concept that they had left behind. I have no doubt thatthese nine individuals felt their lives had been permanently andpositively changed. They had not only reached their specificgoals in an important sense but felt that they had becomedifferent people.

Not every person attending these programs will have the sameexperience as these individuals. In my sample I tried to assurethat the nine individuals did not have obvious personal orphysical problems other than blindness. I obtained thisinformation from the directors.

These agencies do accept students with physical and otherproblems as long as their behavior is not disruptive and as long as the individual has a possibility of benefiting from therehabilitation experience. For example, one of the students I metwas recently blinded at age twenty-five--injured by a shotgunblast while individuals disputed a drug transaction. Whilebeginning his rehabilitation towards independent living, Braille,and mobility, he was required to attend programs to help himbecome free from drug and alcohol dependency. Relapses inchemical dependency would mean dismissal from the program. Otherstudents have various levels of mental ability, determination,and ambition. They may not aspire to higher education and mayhave limited employment goals. Clear progress is more difficultto determine in these cases. **********Repeat Visits to Residential Rehabilitation Centers

One of the unexpected findings of my informal interviewswith students at the three centers was the number of clients who had previously attended one, two, or even three other residentialrehabilitation centers. With hindsight and their obviousappreciation of their present situation, all of them said thattheir earlier residential rehabilitation experiences had beeninadequate. They complained about various shortcomings, includingfailure to teach cane travel properly and short programs thatwere too brief to permit mastery of the skills of blindness.

If there is a national pattern to sequential visits todifferent rehabilitation programs, it merits further study. Thecosts of these visits are considerable; $3,000 per month is acommonly quoted figure. Assuming the earlier visits wereinadequate, there may be unnecessary months and years whenpotential workers are not in the labor force. There also may beunnecessary months and years of individuals' living restrictedlives and being unnecessarily dependent on others.

To obtain a broader perspective on this issue, I spoke with Ms. Suzanne Mitchell, Executive Director for Blind Services,Department of Social Services/Louisiana Rehabilitation Servicesfor the Louisiana Office of Vocational Rehabilitation, Baton

Rouge, Louisiana. She confirmed that the sequential visits dofrequently occur, although she did not know of any researchspecific to this issue. She mentioned several possible reasons:

1) Some clients enjoy these experiences and requestadditional opportunities.

2) Some counselors easily grant requests or themselvessuggest additional visits--it is something for the client to do.

3) Some visits are too brief to make significantrehabilitation possible.

4) Some visits may be for a specific technique such as tolearn to develop computer skills or perhaps to train for aspecific occupation.

5) Frequently those who are gradually losing eyesightreceive rehabilitation services appropriate to their level ofvision loss. A year later a new round may be deemed necessary toadd additional skills of blindness.

I suggest other possible explanations. The first is thepolitics of spending public money. Residential rehabilitationcenters are highly dependent on cash flow resulting from clientfees. In some cases some rehabilitation counselors, throughnormal social networks, may be responsive to the needs ofparticular agencies to receive more clients. Second, someresidential rehabilitation programs are not as effective asothers. Even after many months, some other graduates may not havelearned independent living skills or other skills necessary foremployment (see data comparing the Minnesota agency presentedearlier).

Finally, some blind individuals may have multiple problemsas do others in American society. These additional problems mayprevent significant progress. If some of these can be solved inanother context, it may make sense to send the person for anothersession at a residential rehabilitation center.

The frequency of these sequential visits and the reasons fortheir occurrence merit further research. **********Summary

My observations, reading of documents, and interviews

persuade me that the three agencies--BLIND, Inc., of Minnesota;the Colorado Center for the Blind; and the Louisiana Center forthe Blind are offering remarkably effective residentialrehabilitation programs at this time. Main ingredients of thisoutcome include able leadership; careful staffing; a broad,positive, and yet realistic philosophy about blindness; and acurriculum that links philosophy to student development. Thesetting, including student residences, is also integrated intothe overall rehabilitation program. There is a pervasive upbeatatmosphere which would be hard for any student to ignore. Fromthe board of directors, director, staff, and students there is astrong commitment to the values and importance of theserehabilitation centers. Almost everyone sets high expectations,and everyone wants each student to succeed.

By the information these agencies present, the graduates of these residential rehabilitation programs are successful asmeasured by student goals for attending one of these centers.Many current students and a small sample of former students speakvery well, almost without qualification, of these programs. Somepresent and former students speak of their experience as "life-transforming." In addition to particular skills, they haveacquired a self-concept, a guiding philosophy, and a socialnetwork enabling them to sustain their ability to conquer futurechallenges.

In general I have a critical attitude toward almosteverything and would have readily exposed any problems,discontent, or failure in performance that I observed or learnedabout. More research should be done in order to compare thesethree agencies with other not-for-profit private agencies or the few state-operated residential rehabilitation centers. Additionalresearch should be conducted on the issue of why studentsfrequently attend residential rehabilitation centers on multipleoccasions. Is it because some centers are ineffective? Are theother reasons justified? Which reasons and why? **********

Statutory and Voluntary Agencies Mike Reddin

Discussion of the merits of ‘statutory’ (public) as opposed to 'voluntary' agencies often revolves around the assumed characteristics that each possesses. Just as in discussion of the respective merits of public or

private agencies, these characterisations are frequently over-generalised and sometimes plain erroneous. This note comments on these assumed characteristics.

Kramer, in Voluntary Agencies and the Welfare State (1992) looked at the role of voluntary agencies, and noted that they are viewed as offering many advantages and generating many problems. They are variously viewed as... "A bulwark against, an alternative to, a substitute for, or a complement or supplement for government, or as an obstacle to a more universal and comprehensive system of personal social services."

The initial problem is that generic titles embrace a diversity of forms. The 'statutory public agency' has many manifestations. It can be the branch office of a central government Department (the Inland Revenue - a local office working to a national set of benefit rules and regulations with little if any autonomy in their interpretation), or a local Primary school under a Local Education authority but with considerable autonomy of style, structure and rather less control (in 2004) of curriculum content. It can be a profoundly authoritarian local Housing Department or a 'liberal', community-oriented Patch Team of the local Social Services department. On a broader interpretation, until recently, the 'public agency' could just as well describe your local hospital or a publicly owned utility like a railway station.

Voluntary agencies are often characterised as non-bureaucratic, innovative, sensitive / close to their clientele, and precariously funded. But, the 'voluntary agency' is a term which legitimately embraces the local Church Flower Arrangement Society, or the Rape Crisis Centre staffed (voluntarily) by survivors of the experience. But, if a similar Rape Crisis Centre was funded by the local Social Services or Police Authority with paid professional staff – how would it differ? The term embraces the consciousness-raising lobby group such as the Child Poverty Action Group, or, the agency which provides services (like the Family Service Unit, providing intensive family social work). The voluntary agency may stress its independence and commitment to self-help or it may use paid personnel and derive its finance primarily from public agencies. In brief, to generalise about the qualities or potential of voluntary agencies is hazardous given their heterogeneity of structure, objectives, finance, personnel and practices. It may

however be possible to generalise within these broad categories - trying to differentiate general properties of the agencies which are predominantly 'fund-raisers' as distinct from 'service providers', the 'lobbyists' or the 'innovators'.

For similar reasons the 'volunteer' is not easy to categorise. She or he offers themselves, often unsolicited, to perform a task. This task may be something which they will undertake for no financial reward (although, having volunteered you might find that your services are rewarded in cash or in kind). Your offer of 'service' may not be accepted (by the person to whom it is directly offered or by the agency through whom you offer it). If the offer is accepted it may be on terms, and within bounds, which were not part of you initial conception of the task. You may or may not learn to live with these constraints.

Further, voluntarism is not synonymous with benevolence. People volunteer for many things, not all as laudable as visiting the elderly neighbour or serving on the School Governors. Some sign up to be Kamikaze pilots, or to drive car bombs through Baghdad or Jerusalem. Others offer to give blood or to be prison visitors. In any of these situations they may volunteer for diverse reasons and from diverse motives. Some may confine their voluntary activities to close family, to members of their religious faith while others will ignore those close to them and seek out the poor of the Third World.

Increasingly, the volunteer does not work alone, or with autonomy. Their services may have been solicited by a statutory agency who wants them to work in a particular way, at a particular level, and on particular terms. A professional may define the boundaries of their activity, or, more positively offer expert support in what may prove a difficult setting. On the other hand you may knock on a neighbour's door, or drop in to a local youth club, and volunteer - on your own terms.

Voluntarism, statutory services and 'the displacement effect'

Since the first recorded attempts to create 'formal' social services, there has been a fear that they might prove ‘hazardous to the existing social fabric- the moral hazard - ‘undermining’ existing patterns of social care. The new agencies would brush the old forms aside in their desire to be seen to be doing conspicuous good. Alternatively, their presence would destabilise the old social loyalties (especially if these were rather frail). Families would cast their parents onto the streets to be collected by the new social service 'sweepers', children would be left unfed - safe in the knowledge that the school meals service would feed them - and the aged, the handicapped and the young would be successively abandoned as the benevolent spirit of public welfare scoured the land for trade.

Today, with a more widespread if uneasy acceptance of the potential positive virtues of social service agencies, we are still faced with concerns that formal interventions may displace the informal. These concerns may not be wholly unreasonable but are hard to demonstrate or anticipate. Consider the following situation.......

Case study:

Mrs Jones, a widow in her fifties has, for the past ten years, called on her elderly neighbour Mr Smith; she helps with his shopping, some domestic cleaning, a little laundry, and sorts out 'problems' - with the Electricity Board, the Council, the bank etc. For this he has long rewarded her with the daily equivalent of £1. Mrs Jones never sought this 'reward' but Mr Smith insists she receive it.

Recently, Mrs Jones has learned that Mr Smith's neighbour, another elderly gentleman (Mr Ross) is getting daily visits from the local

authority Home Help. For such visits Mr Ross pays nothing (his income is low) and the Home Help receives some £5.25 per hour for her services. Allowing for overheads, it costs the local authority some £8 per hour to finance this service.

Both Mr Smith and Mr Ross are happy with the service they receive.

Questions:

1. What should Mrs Jones do?

2. What should the local authority do when faced with new demands for domestic help?

Africana Plus

No43 october 2001.1

2001International Year of the Volunteer

In its 52nd Session of 20 November 1997, the General Assembly of the United Nations, in resolution 52/17, supported by 123 countries, decided to make the year 2001 the Year of the Volunteer. In a publication entitled "Hand on Heart", the Catechetical Office of Quebec defined voluntary work as derived from the Latin word "velle", to wish, a work done because one wishes to do it. It is connected with the word "benevolence", meaning "well-wishing". Voluntary work is therefore an option, distinguished from other work by its character as a disinterested choice.

To return to the UN, this body explains that voluntary service is something which is found in practically all civilizations and societies. It may take the form of mutual service on the occasion of some crisis or emergency, or it may involve participation in programmes aimed at resolving conflicts or eliminating poverty. Volunteers may work on the local or the national level. Some programmes are even international. Voluntary action is more than ever necessary to counter the

degradation of the environment, the abuse of illegal drugs, and the pandemic of AIDS, all of which affect the most vulnerable sectors of society throughout the world. These are subjects which preoccupy the international community, and they concern especially the eradication of poverty in developing countries.

The first aim of this Year of the Volunteer is to recognize the voluntary efforts of groups and individuals. Their contribution continues to be vital to the work of the United Nations agencies in such fields as adult literacy campaigns, vaccinations, protection of the environment, population control, nutrition. It is important to make as much use as possible of this new year which is given to us. There are more important things in the world than our own personal problems. In particular there is the terrible gap between the rich and the poor, which is everywhere growing wider every day. There are the millions of refugees, the hosts of helpless AIDS victims.

So much for the world and the United Nations. What then of Canada? Canada was one of the first Western countries to give public money directly to development agencies to match the private donations made to them. This is an indication of the interest of ordinary Canadians in international development. No doubt development agencies differ greatly in their size and in their aims, but they nearly all spring from concern for needy people: the hungry, the sick, refugees, all those in distress. They are also interested in basic education, in helping people to come together to solve their common problems, in providing emergency relief in disaster or famine situations. Development agencies wish to make Canadians conscious of the problems of international development and to win their help, particularly in supporting government policies which favour the construction of a more just and peaceful world order.

The voluntary sector is an integral part of the social infrastructure of Canada. According to the statistics of the last three years, more than 7.5 million Canadians are engaged in voluntary work and they perform services valued at thirteen thousand million Canadian dollars. If these volunteers had to be paid, their salaries would exceed those of people in many sectors of the economy, including oil, forests and mines. These millions of volunteers put in countless hours of service every year, equivalent to the work of 750,000 full-time workers, i.e., 5% of the total active population of Canada, equal to the working population of New Brunswick and Saskatchewan.

The report of the Committee for the Support of Voluntary Organizations working for a Multicultural Canada, published in Ottawa-Carleton in 1992, suggested that the best formula for voluntary work is this: Give

volunteers the opportunity to express themselves, allow them to discover hidden facets of their own and other people’s personalities, and give them the feeling that they are creating links of solidarity with their community and contributing to its welfare. We may add to this list the necessity of providing volunteers with training, support and recognition of their services. If we do all these things, we shall be producing energetic volunteers who will find in their work not only pleasure but also renewed energy.

If the world is going badly, we have to find people with the courage to set it right. Who will be bold enough to engage in a struggle which seems so unequal? More than ever we need people who will give without counting the cost. A French Dominican, Father Lebret, once said that the world needs fools, fools, that is, who are prepared to forget themselves, to do more than utter fine words, to dedicate themselves to the good and the true whatever the cost. These are the kind of fools the world needs, men and women capable of diving into the unknown and insecure depths of poverty. We need fools who love the simple life, people of peace, of uncompromising loyalty, contemptuous of their own life, willing to accept any task wherever it may call them. We need people who are both free and obedient, spontaneous and tenacious, gentle and strong, not afraid to dirty their hands, willing to share the burdens of the Third and the Fourth World. They are like the yeast in the dough. There is no great difficulty in being part of the dough, one only has to allow oneself to be carried along by events. To be yeast is not really difficult either, provided one preserves oneself from contagion by the mass. If there is no yeast, the dough remains dull and heavy; but if there is no dough in which it can be inserted, the yeast remains useless and sterile. To be a leaven in the mass means daring to enter into the dough of the world and to inject into it a stimulus which will cause it to rise. And this yeast is always the same. It is composed of truth, justice and love.

What then about us? What can we do in this new year to make our world a better world? There are plenty of possibilities. If we have a comfortable house, we can leave the doors open to our children’s friends who are only looking for a sympathetic ear. We can share our comfort. Perhaps we are retired on a good pension and are looking for something to do. We have not far to look. There is always room for volunteers. Let us share with others the benefit of our work. Community Welfare Services

Akhil Bhartiya Netraheen Sangh B-III Block, Raghubir Nagar, New Delhi-1100027. Phone: 5449519

All India Federation of the Deaf18-North end Complex, R.K. Ashram Marg, New Delhi-110001. Phone: 3364766, 663984

Bharat Blind Tech. Welfare SocietyK. Block Near Central Market, Madangir Delhi-110062. Phone: 6983520

Blind Relief Association Lal Bahadur Shastri Marg Nr. Oberoi Hotel, New Delhi-110003. Phone: 4361376/4361759/4364730. Cancer Sahyog (Emotional Supp. Group)c/o Indian Cancer Society (Delhi Branch), Q-5A, Jangpura Extension, New Delhi-110014. Phone: 4319572

Indian Red Cross Society (Delhi Branch), Redcross Bhavan, Golf Links, New Delhi-110003. Phone: 4618915, 4621023

Institution for the Blind Amar Colony Lajpat Nagar IV, New Delhi-110024. Phone: 6411915

Indian Cancer Society(Delhi Branch) Q-5A, Jangpura Extension New Delhi-110014. Phone: 4319572/4314907

Voluntary Health Association of India40-Institutional Area, South of I.I.T., New Delhi-110016.

Phone: 6518071/6518072/6962953

Delhi Council for Child Welfare Qudsia Bagh, Yamuna Marg, Civil Lines, New Delhi-110054. Phone: 2518907/239573

Rehabilitation Services for disabled

Handicapped Welfare Federation14 LF Tansen Marg, New Delhi-110001. Phone: 3710791Maximising Employment to Serve

The Handicapped Shop no. 5, Local Shopping Centre, Uday Park, New Delhi-110049. Phone: 668048/6965039

Services for the spastics & Mentally ill DestituteHind Kusht Nivaran Sangh (Leprosy)33-34, Northern Complex, Hony., R.K. Ashram Marg, Panchkuiyan Road, New Delhi-110001. Phone: 3364639

Spastic Society of Northern India2, Balbir Saxena Marg, Hauz Khas, New Delhi-110016. Phone: 669107/6966331

UNITED NATIONS RELIEF AND REHABILITATION ADMINISTRATION The United Nations Relief and Rehabilitation Administration (UNRRA) was created at a 44-nation conference at the White House on November 9, 1943. Its mission was to provide economic assistance to European nations after World War II and to repatriate and assist the refugees who would come under Allied control. The U.S. government funded close to half of UNRRA's budget.

The organization was subject to the authority of the Supreme Headquarters of the Allied Expeditionary Forces (SHAEF) in Europe and was directed by three Americans during the four years of its existence. Its first director-general was Herbert Lehman, former governor of New York. He was succeeded in March 1946 by Fiorello La Guardia, former mayor of New York City, who was in turn followed by Major General Lowell Ward in early 1947.

UNRRA assisted in the repatriation of millions of refugees in 1945 and managed hundreds of displaced persons camps in Germany, Italy, and Austria during that year. It provided health and welfare assistance to the DPs, as well as vocational training and entertainment. It administered the work of 23 separate voluntary welfare agencies, including the Joint Distribution Committee, the Organization for Rehabilitation through Training (ORT), and the Hebrew Immigrant Aid Society (HIAS). In late 1945, as the displaced persons camps were given greater autonomy, the voluntary agencies increasingly operated independently. UNRRA continued to serve as a major employer of displaced persons.

The massive and protracted relief efforts caused the agency to run out of funds and in 1947 its tasks were taken over by a successor organization, the International Refugee Organization (IRO). The new agency inherited the care of 643,000 displaced persons in 1948.

About us

The International Council of Voluntary Agencies (ICVA) is an independent, international association of non-governmental, not for profit organizations established in 1962. It provides a unique global forum for voluntary agencies from the North, South, East and West; a forum where they can meet to exchange views, share strategies, coordinate actions and forge effective partnership across cultures and societies with different levels and forms of development. ICVA supports the work of voluntary agencies in general and its member agencies in particular, in influencing national and international policies, advocating for the protection of refugees and displaced persons, supporting the provision of relief and rehabilitation assistance, fostering sustainable development, as well as representing independent humanitarian perspectives to people, governments and inter-governmental organizations.

Though ICVA does not normally undertake operational activities in the field, the situation of transition from war to peace and from humanitarian aid to reconstruction and development in Bosnia and Herzegovina compelled ICVA in the spring of 1996 to establish itself in the center of the vast number of NGOs operating in the region. Effective cooperation and coordination among NGOs was and is essential to the long-term success of the international assistance effort in the country.

ICVA has opened an office in Belgrade, FR Yugoslavia in September 1998, with the mission complementary and very much like to the one in Bosnia. The main task was to work with refugee oriented NGOs on all relevant issues, as well as to foster the cross-border co-operation.

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