From User to Citizen

16 years of experience in Norway with the dismantling of disabling barriers

Can we learn from the Norwegian experience? Demographic similarities to Ireland:

Relatively small population (4 ½ million) 4 cities (population more than 100,000) Majority of towns have a population of less than 5,000

Strong ideology on supporting autonomous local government and decentralisation of services

Strong culture of normalisation and equality for all citizens

1st January 1991 – a total reform of the care people with learning disability

The vision “From service user to citizen”

All institutions to close by December 1995 People with intellectual disability should

access mainstream services Mainstream services must change in order to

accommodate ALL Norwegian citizens - whether or not they have a disability.

NO MORE SEGREGATED SERVICES

Pre-school

Children with disabilities should be given priority to places in their local pre-schools

Special grants were to be made available to existing pre-schools to make any necessary accommodations for the child

All new pre-schools must be fully accessible to everyone, both indoors and outdoors, so that as far as possible, there is no need for “special” adaptation for “special needs”

School

All schools must provide education suited to the individual child (IEP) This applies to ALL children, with or without disability

Extra teachers and classroom assistants are provided as needed

Special education (from specially qualified teachers) within the mainstream school should be available to children with special needs

Housing

Adults with intellectual disability should own or rent their own home

The homes should be in their local communities and of the same standard and form as any typical home in that community

Support services should be linked to the individual, not the accommodation

Staff do not sleep or have offices in the person’s home

Work

Since the 1990’s Norwegian employment politics focused on “ the work line”. This meant that everyone should work to the best of their ability in ordinary paid jobs. This goal included people with intellectual disability

The government put several strategies in place for overcoming barriers to work for people with disabilities (including supported employment)

Recreation

People with intellectual disability should have the same cultural and recreational opportunities as anyone else

Cultural and recreational activities should be integrated with already existing activities in the community

Transport

Access to transport is essential for access to recreational activities, education, work, and daily activities such as shopping, going to the dentist, etc.

A goal of the reform was to ensure: accessible public transport to enable all to live an

active life Taxi services for individuals who cannot use public

transport (or where public transport is not developed enough)

Part of the ordinary taxi service although booked separately and state subsidised

Pay public transport rates (€2) Escorts (paid, friends or family) travel with you for free

Health services

People with intellectual disabilities should access their local health/clinical services using the same routes as anyone else

Local health services can refer to secondary or tertiary medical services in the same way as for any other members of the population.

At county level, habilitation teams were set up. These teams were to provide a consultancy service to individuals with learning disability, their families and staff.

The start (1988 - 1991)

Development of habilitation plans for every individual with learning disability (over 13,000 individuals registered)

Social services set up “responsibility groups” around each individual consisting of the individual, family members, staff, clinicians

These groups were responsible for supporting individuals to: Choose habilitation goals Identify individual needs and preferences in all areas of life Identify the types of services they would need Identify the levels of support needed Identify the need for interagency co-ordination Draw up plans for implementation

Results after 10 years (2001)(The Norwegian Council of Research)

General improvement in standard of living and opportunities for a “normal” life Many people were now living in their own homes Children were attending local playschools and

schools Adults were in jobs or taking part in activities in their

local communities and living in their own homes Services were provided from the local community

HoweverStudies of health before and after the reform

did not show any improvement

Results 16 years after the reform

Report from the Directorate of social welfare and Health “ We want to, we want to, but are we able to?” (June, 2007)

Hearing conference organised by the “State Authority for People with Disability” (September, 2007) at the request of the Minister of Work and Inclusion

Outcomes - preschool

Concerns “Clustering”Some pre-schools have staff that are specifically trained to work with children with special needs. There is a tendency that children with intellectual disability go to these pre-schools.

Children with disabilities are included in

their local pre-schools

Outcomes - preschool

Concerns “Clustering”

The number of children in segregated classes within the school is increasing

Growing numbers of children are being sent to schools for special diagnosis groups (ADHD, Autism, Blind, Deaf, Speech Impediments)

Standard of education not better than in special schools Few third level education opportunities

Every child with a learning disability

has a place in mainstream school

78% of adults with learning disability live in their own accommodation by 20 years of age

Outcomes - Housing (Norwegian Institute for Town and Regional Research)

Concerns Clustering

79% rent from the social services 1/3 of those live with others 1/3 live in homes that are clustered

When social services provide housing they tend to: Build bigger houses for larger groups Build houses close to houses for people with

intellectual disability and/or other minority groups Build houses that look different from ordinary homes Link support staff to houses, not to individuals which

means that 30 – 40 part-time staff can be linked to one house

Change their priorities – they are now focusing on accommodation for the elderly and people with mental health issues and waiting lists for people with learning disability are starting to appear

Outcomes - work

CONCERNS Only 1300 people with intellectual disability are

employed in the open labour market 80% who work are in some form of sheltered work Only 4% of people with intellectual disability were

included in government schemes to integrate them into ordinary jobs

The number of people with intellectual disability

in work is higher now than before the reform

Outcomes - recreation

CONCERNS Overall participation in cultural and recreational

activities has decreased People with high level support needs seldom have a

holiday away

10, 500 people have “social supporters” (paid friends) and a total of 165 recreational assistants

are employed full time across the country

Outcomes - Transport

Improvement in accessibility of public transport – but not consistent

Taxi service for people with disabilities can be used for recreational activities, going to shops, banks, official offices BUT not for getting to and from work!

Health services – research results

1995: increase in physical problems, psychiatric illness and challenging behaviour after the reform

2006: in 44 of 59 local communities audited, restraint was being used illegally

2007: Increase in the use of antipsychotic medication – often prescribed for challenging behaviour without any clear indications of psychotic symptoms

Why the negative trends?

Shift of political focus to next “big” reform Funding used for other “needy” groups No legislation to ensure rights Lack of competence in community services Loss of qualified professionals Lack of transparency in community services Poor overseeing/auditing of services A natural tendency towards clustering

Avoiding the pitfalls:

Appoint personal co-ordinators/managers who are responsible for developing plans for individuals that describe the optimum life situation for that person in terms of goals and support

Develop legislation that ensures: that individual plans are implemented that individuals have rights to services and resources

of certain standard that housing people in groups, to save

money/resources is not permitted

Avoiding pitfalls (contd.)

Strengthen skills of staff: Strengthening of competence/qualifications of staff/service

providers/health practitioners in all life arenas Develop local support services for staff that can give

ongoing advice, support, training and feedback to frontline staff on their daily work (more than a consultancy service for problem behaviour)

Set up systems to ensure transparency and accountability of services with regular evaluations and audits

Have a holistic focus, on all life arenas for each individual from day one