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DOCUMENT RESUME

ED 348 179 RC 018 656

AUTHOR Dwyer, Kathy, Ed.; Spas, Diana, Ed.."ITLE Common Threads: Weaving Together Rural Resources for

People with Disabilities. Proceedings (Missoula,Montana, September 15-17, 1991).

INSTITUTION Capitol Children's Museum, Washington, DC.SPONS AGENCY Administration on Developmental Disabilities (DHHS),

Washington, D.C.; National Inst. on Disability andRehabilitation Research (ED/OSERS), Washington,DC.

PUB DATE 91CONTRACT 07DD0302/13; G0087CO228NOTE 115p.PUB TYPE Collected Works - Conference Proceedings (021)

EDRS PRICE MF01/PC05 Plus Postage.DESCRIPTORS *Advocacy; Delivery Systems; *Disabilities; *Federal

Legislation; Program Descriptions; ProgramImplementation; *Rural Areas; Rural Education;*Services; Social Support Groups; *TrainingMethods

IDENTIFIERS Americans with Disabilities Act 1990

ABSTRACTThis document summarizes a conference sponsored by

the Montana University Affiliated Rural Institute on Disabilities(Rural Institute). The Rural Institute is a center forinterdisciplinary, multi-organizational research, service, andtraining projects aimed toward improving the lives of persons withdisabilities who live, work, and recreate in rural areas. Twenty-sixspeakers made presentations on exemplary programs in five topicareas: (1) building linkages, collaboration, and networks; (2)integrating training with services; (3) support systems from thecommunity, professionals, and peers; (4) improving accessibility byusing interactive television and improving transportation andfacilities in public buildings; and (5) innovative ruralinterpretations of disability laws ?rid policies. This documentcontains transcripts of the conferen;e presentations, grouped bytopic area and followed by the "common threads" for each area, i.e.,summaries of the comments made during each plenary session. A "RuralDisability Services Network" initial directory, citing programs fromvarious states is included. The appendices include recommendationsfor consumer advocacy involvement and a summary of the Americans withDisabilities Act technical assistance grants and coordinationcontracts awarded through the National Institute on Disability andRehabilitation Research. (LP)

****************y*******************A*****W******************W*********Reproductions supplied by EDRS are the best that can be made

from the original document.******************************************************************x****

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Points of view or Opinions stated I ft this &Cu-ment do not necessarily represent OficialOE RI position or policy

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TO THE EDUCATIONAL RESOURCESINFORMATION CENTER (ERIC).

PROCEEDINGSCommon Threads Conference

September 15-171 1991Missoula, Montana

Montana University Affiliated Rural lngtitute oniDisabilities

The University of Montana, Miss a, Montana

2 'BEST COPY AVAILABLE

COMMONTHREADSWeaving Together

Rural Resources forPeople with Disabilities

Proceedings of the 1991Common Threads Conference

Kathy Dwyer, EditorDiana Spas, Editor

Dana McMurray, Graphic Artist

Sponsored by theMontana University Affiliated Rural Institute on Disabilities

The University of Montana, Missoula, Montana 59812

3

* Copyright 1991, The University of Montana

Montana University AffiliatedRural institute on Disabilities52 Corbin HallThe University of MontanaMissoula, Montana 59812

Sponsorship for publication of this document comes in part from the National Institute onDisability and Rehabilitation Research (#G0087CO228) and the Administration onDevelopmental Disabilities (#07DD0302/13).

*s...,-.4>gtoi2).".-:4S'Montana University Affiliated

RURAL INSTITUTE ON DISABILITIES111611=11111111=11

The Montana University Affiliated Rural Institute on Disabilities (Rural Institute) is a center forinterdisciplinary, multi-organizational research, service and training projects. The primary mission of theRural institute is to knprove the lives of persons wkh disabilkies who live, %vork and recreate ki nsal

America

In 1978, the federal Administration on Developmental Disabilities (ADD) acknowledged the need fora University Affiliated Program in Montana ADD granted funding and the Rural Institute began operationon the University of Montana campus In 1979. The Research and Trailing Center on Rural RehabilitationServices (RTC:Rural) was established within the Rural institute in 1987, with funds from the U.S.Department of Education's National institute on Disability and Rehabilitation Research (NIDRR).Throughout its history, the Rural institute has clarified its mission, steadily increased the number of itsprograms and expanded the scope of its activities to a national scale.

The I tural inst tute has grown in many ways, from the numbers of staff and projects to the size of itsoffice space. Fun Jing has increased tenfold: from $126,000 in fiscal year 1979 to over $2.5 million infiscal year 1991. The Rural institute now generates an additional $12 for evety $1 of core fundingreceived from the Administration on Developmental Disabilities.

The Rural Institute responds to local, regional and national needs by:conducting research, service and training activities with health, education and welfare agencies,

as well as private organizations that focus on rural needs,providing technical assistance to organizations and agencies in rural areas, andcollecting, coordinating, and disseminating kifoimation related to rural disability issues.

These service, training, technical assistance, research andinformation dissemination activities:

help people with disabilities in rural areas find quarity social and educational services, andhealth care,

increase the quantity and quality of disabilily service professionals arid care providers kt nrralsettings,

discover and develop state-of-the-art approaches to meet the challenges of living with adisability in rural areas; and

provide informakin about rural issues to the public and professionals.

The ultimate aim of the Rural Institute is to improve the well-being, self-sufficiency, and productivity of Americans with disabilities in rural areas.

4 iii

TABLE OF CONTENTS

MONTANA UNIVERSITY AFFIUATED RURAL INSTITUTE ON DISABITTIES

INMODUCTION bc

KEYNOTEFROM COMMON THREADS TO A NETWORK

Jim de Jong, Executive DirectorCoalition of Citizens with Disabilities in Illinois 3

BUILDING LINKAGES COLLABORATION NETWORKS 7

INTERAGENCY COLLABORATION FOR TRANSITION SERVICES FOR YOUTH WIT1-1DISABILITIES IN RURAL AREASPatricia Wallisch, State Coordinator for TransitionNorthern State University, Aberclerrn. f%outh Dakota 9

RURAL VOCATIONAL REHABILITATION IN THE TRIBAL SETTINGJoe Kelley, Project DirectorKodiak Area Native Association, KANA Vocational Rehabilitation, Kodiak, Alaska 11

COMMUNITY OUTREACH PROGRAMCharles N. Schroeder, Executive DirectorPutnam County Comprehensive Services, Inc., Greencastle, Indiana. 14

EMPOWERMENT AND AGINGAnne Cook, Project DirectorMissoula Aging Services, Missoula, Montana 17

COOPERATIVE EXTENSION SYSTEM: A NATIONWIDE NETWORK OF RESOURCESW.E. Field, ProfessorBreaking New Ground Resource Center, Purdue University,West Lafayette, Indiana 19

THE COMMON THREADSBuilding Linkages, Collaboration, Networks 22

INTEGRATING TRAINING WITH SERVICES 25

FROM IVORY TOWER TO BARN RAISING:A RURAL UNIVERSITY REHABILITATION PROGRAM IN PUBLIC SERVICE

Douglas A. Dunlap, Associate Professor/Program CoordinatorUniversity of Maine at Farmington, Rehab Services Program,Farmington, Maine 27

THE UFE QUILTERS PROJECTDonald K. Kincaid, Project CoordinatorWest Virginia University, University Affiliated Center forDevelopmental Disabilities, Morgantown, West Virginia 30

THE FAMILY CAREGIVER PROJECTC.D. Fernald, Ph.D., Associate Professor of Psychology

Department of Psychology, University of North Carolina,

Charlotte, North Carolina34

DISABIUTY RIGHTS AND ADVOCACYRobin DePagter, Outreach DirectorSoutheastern Minnesota Center for Independent Living,

Rochester, Minnesota37

THE COMMON 'THREADSIntegrating Training with Services

SUPPORT SYSTEMS

DEVELOPING A RESPITE PROGRAM IN A RURAL COMMUNITY

Maribeth Culpepper, LM.S.W.Las Cumbres Learning Services, Inc., Espanola, New Mexico

ao

43

45

PERSONAL ASSISTANCE FOR INDEPENDENT LIVING

Helen King, Assistant to the DirectorRhode Island Housing and Mortgage Finance Corporation,

Providence, Rhode Island52

MEETING THE CHALLENGE OF INTEGRATED CHILD CARE

Sarah Mulligan, Project Director, Educational Home Model Outreach Project

The University of Montana, University Affiliated Rural Institute on Disabilities,

Missoula, Montanasa

PEER SUPPORTConnie Kramer, Agency DirectorVision Northwest, Portland, Oregon 56

THE COMMON THREADSSupport Systems

58

USING INTERACTIVE TELEVISION TO PROVIDE AND EXPAND RURAL SERVICES

John Pinter, PresidentEaster Seal Society of Utah, Inc., Salt Lake City, Utah 65

ACCESSIBLE TRANSPORTATIONSharon Swanson, Rural SpecialistNew Vistas Independent Living Center, Sante Fe, New Mexico 67

ACCESSIBILITY OF COMMERCIAL AND PUBLIC BUILDINGS

Bobbie Bouvier, Program Supervisor/CounselorCenter for Independent Living of Northeastern Minnesota, Hibbing, Minnesota 68

AFFORDABLE AND ACCESSIBLE HOUSINGBill Crandall, HAMMER Project CoordinatorAccess Alaska, Fairbanks, Alaska

70

THE COMMON THREADSAccessibility

71

vi

INNOVATIVE RURAL INTERPRETATIONS OF DISABILITY LAWS AND PRACTICES 75

THE SPECIAUZED FAMILY CARE PROGRAMKaaren C. Ford, Medley Specialized Care andCommunity Placoment Program ManagerWest Virginia Department of Health & Human Services,Office of Social Services, Charleston, West Virginia 77

SUPPORTED EMPLOYMENT IN A RURAL SETTINGKris Ann L. Car Wen, Administrative AssIstantRural Employment Alternatives, Inc., Conroy, Iowa 79

COMPLIANCE WITH P.L. 99-457 IN RURAL COMMUNITIESThelma Robinson, Pediatric Nurse Specialistinfant Learning Program, Department of Health & Social Services,

Anchorage, Alaska &q

FARM FAMILY REHABIUTA110N MANAGEMENTChrystal Stanley, Assistant DirectorFarm Family Rehabilitation Management (FaRM) ProgramEaster Seal Society of Iowa, Inc., Des Moines, Iowa 87

THE COMMON THREADSInnovative Rural Interpretations of Disability Laws and Practices as

CONCLUSION 93

THE MOST COMMON THREADSConclusion 95

RURAL DISABILITY SERVICES NETWORK 99

Rural Disability Services Network Worksheet 121

APPENDIX 123

ETIQUETTE OF CONSUMER INVOLVEMENTTom Seekins, Fabricio Balcazar, and Stephen B. FawcettResearch and Training Center on independent Living, University of Kansas,

Lawrence, KS 125

NATIONAL INSTITUTE ON DISABILITY AND REHABILITATION RESEARCHADA Technical Assistance Grants and Coordination Contract 127

INTRODUCTIONOn September 15-17, 1991, the Montana University Affiliated Rural Institute on Disabilities sponsored

the conference °Common Threads: Weaving Together Rural Resources for People with Disabilitles inMissoula, Montana The goal was to bring together people knowledgeable about disability services inrural areas, and to help them share their experiences, challenges, and solutions: their 'common threads.*

Speakers made presentations on exemplary programs in five topic areas:

Building Linkages, Collaboration, NetworksIntegrating Training with SeMces

Support SystemsAccessibility

Innovative Rural Interpretations of Disability Laws and Policies

After the presentations in each topic erea, conference participants adjourned to small group sessions,where facilitators guided the discussion to iiighlight the ways that participants' programs had respondedto the challenge of the topic area. Participants were encouraged to share experiences, expertise, andproblems. The facilitators kept notes on flipcharts, then distilled each one-hour discussion into a single

sheet of 'common threads.'

Each participant was also provided with a *do-it-yourself conference participant's resource directory.°As the participant rotated through various small group sessions, she or he could enter information on thisform in a space next to each participant's name: detailing areas of expertise, type of program, innovativetechniques, etc. This helped participants get to know each other better and encouraged networking.

The groups reassembled for morning and afternoon Common Threads plenary sessions, in which allthe facilitators summarized the small groups' contributions--followed by a general discussion of the topicarea by the entire group. The diagram below illustrates the overall flow of the conference: from the initialpresentations, through the small group discussions, to the plenary sessions.

Programmatic Flow at the1991 Common Threads Conference

(a playful representation)

ix

This document contains transcripts of the presenters' talks, grouped by topic area and followed bythe °common threads° for each area, i.e., summaries of the comments made during each plenary session.Comments are grouped &According to subject matter, but not in order of mention or importance. They areall equally importantthough °common threads' which were voiced the most frequently are printed in bold-face type. These Common Threads plenary sessions elicited positive, proactive statements comprisingthe collective wisdom of some very innovative rural disability programs, and we are pleased to be ableto share that wisdom with you.

'N .

\\.\

KEYNOTE

FROM COMMON THREADS TO A NETWORKJim de Jong, Executive Director

Coalition of Citizens with Disabilities in Illinios

The provision of effective comprehensive

services to citizens with disabilities requiresadequate resources; human and fiscal. It

requires the involvement and understanding of

the population we serve. It requires anunderstanding of the unique and specificcharacteristics of the locales we work and live

in and the networks which operate in ourcommunities. We must identify our commonthreads and weave them into a responsive

and effective network.Given all the components required to

successfully interact in our jobs, our vision

must be clear, concise and comprehensive.What has been espoused at this conference is

our common vision of the full integration ofpersons with disabilities in all aspects of life,work, recreation, school, religions and

community activities. To successfully meetour goals we must understand the society wewish to integrate and the forces which drive

our society. These forces are capitalistic anddemocratically driven. Therefore, we mustunderstand and interact in these arenas. We

must become politically aware and active tocreate opportunity and adequate resources for

citizens with disabilities to utilize iii the

fulfillment of their maximum independence and

productivity.We have shown clearly at this conferenrg

the need to be involved in networks, formaland informal, and I contend we are experts at

maximizing our resources, but we havehistorically shied away from politics. This

must change today, You cannot be effective in

service delivery or social policy changewithout political action. For it is politicianswho determine resource allocations or put inbasic terms, it is they who distribute your tax

3

dollar. If we do not speak up or weave ourwork into the political arena, then wo cannotcomplain that our issues are ignored.

To actively and effectively affect thepolitical arena we must first get our own acttogether. We must involve all the players in

our field, the dedicated counselors, effectiveadministrators, and service providers involvedin the complete spectrum from the medical

rehabilitation field to the supportedemployment job coach and all others. Most of

all, and primarily, we must empower and

involve citizens with disabilities, their families

and friends. If we were to place all theseplayers in a common arena, we must

represent at least 25% of the entire populationin America.

Clearly, we have the numbers to affectpolitical responsiveness, but we have notconsistently recognized our potential politicalpower. This potential impact upon theAmerican political landscape is valid to rural

areas as well as urban. In fact, as we havelearned today the impact on the rural politicallandscape is available to us through thenetworks we have defined and articulated in

our areas of the country. The church, thelocal cafe breakfast meeting, the variousanimal clubs (Lions, Moose, Elks, etc.) and

our rehabilitation networks.We must dedicate ourselves, whether an

office manager in our field or the consumer of

service to get politically involved and influencethe social consciousness of America and theresultant resource allocation of our tax dollars

to create opportunity for citizens to beproductive as personally possible.

If wP break down the word POWER, it canbe our guiding principle to action.

114;

PPride In our profession andpopulation of people we are working toassist. Remember we enter this field notfor the financial rewards, but to makeAmerica a better place for all its citizens.

0 Outreach must continually occur tounder-representedspoups and to potentialallies (I.e. senior citizens).

W. Wisdom to understand tha societywe wish to integrate, whicn meansparticipatory democratic action.

E. Energy to attend town meetings andpolitical activities so our presence andviews are felt and heard consistently.

R. Respect for one another and theunique and individual talents we bring toour political movement, There is not oneeasy way to influence the political arena.

It takes diverse efforts from attending thesame church as local politician, to writingletters to legislators, to testimonies inCongress. Advocates should bring diversetalents to our cause since it Is a diversemulti-cultural world we wish to integrate andmake accepting,

When we put all these characteristicstogether toward our common vision we wilthave POWER to create an accessible,acceptable world of opportunity for citizenswith disabilities and a better America. ThePOWER is yours to have and to use. We havethe threads of potential, we must now weavethem into a network of reality.

For more information contact the ROBACProgram, University of Missouri at Columbia,401 East Locust Street, Columbia, MO 65201,(314) 882-3807 or (314) 882-1727 FAX.

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4

BUILDING LINKAGESCOLLABORATIONNETIA/C)FIKS

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INTERAGENCY COLLABORATIONFOR TRANSITION SERVICES FOR YOUTHWITH DISABILITIES IN RURAL AREAS

Patricia Wallisch, State Coordinator for Transition (Presenter)

Transition services for youth with disabilitiesin rural areas are often nonexistent or, Ed best,hard to access. Rural disabled youth have aneven harder time than their urban counterpartsseeking jobs, reliable transportation to and fromwork, appropriate leisure time activities, andsuitable independent living resource.% Many ofthese young people simpty graduate from highschool and then spend the rest of their lives athome with their families. Their potent:al is

untapped. Generally, they are unhappy with thequality of their lives.

In Aberdeen, South Dakota, and thesurrounding rural areas, many of these problemsare being sotved by the Transition to AdutthoodProject, funded two years ago by the State ofSouth Dakota through a Federal Grant. Theproject was piloted in the Aberdeen area. It

confirmed that many of these problems existed.But if the project was going to succeed, therehad to be a collaborative effort in the communityto support plans for achieving the goals ofmaximum independence and a quality life stylefor the disabled population it intended to serve.

Collaboration with community organizations,government agencies, school personnel,employers, and parents in and around Aberdeenbrought solutions to many of these problems.This collaborative effort made the TransitionProject in Aberdeen a model program for thestate to follow. Dissemination of the project isnow being started throughout the state, and itssuccess has been attributed to the combinedefforts of people working together for thecommon purpose.

It is important to understand the roles playedby these organizations and how they contributedto the success of the project. The organizationscan be essentially divided into five areas:community organization, government agencies,school personnel, employers, and parents.

Community AgenciesThe Adjustment Training Center, Aberdeen

Parks and Recreation Department and NortheastMental Health have played an active role intransition planning.

The Adjustment Training Center has attendedtransition meetings for students in high school.tt has responded on a number of occasions inthe areas of testing and vocational evaluationsfor disabled students. Although the idea is toplan for individuals in the least restrictiveenvironment, in some cases students areentering the Adjustment Training Center for workexperience in a sheltered environment after highschool.

The Park and Recreation Department inAberdeen has been especially active with theschool district in addressing leisure-timeactivities for the disabled population. TheSpecial Needs Consortium was formed with theschool district, parents, and Park and Recreationofficials to plan recreational opportunities.Activities like swimming lessons, open gym,dances, and cross country skiing were plannedby the Consortium.

The Northeast Mental Health Agency hasbeen working with the Transition Project to dovocational evaluations in the work environment.Through a grant, the agency is currently fundinga program whereby they will evaluate a student'swork potential through a series of job tryouts inthe community during a two-week period.

Government AgenciesVocational Rehabilitation and Job Service

have both contributed expertise in job-relatedareas. Vocational Rehabilitation Counselors arenow attending all senior and junior yearstudents' transition meetings. They are gettingan earlier start on adutt planning and lendingtheir knowledge to the Transition Planning Teamwhen necessary.

Job Service has become actively involvedwItii students through the STEP Program widSummer Youth Employment. They we alsoproviding training for teachers who are using theSTEP curriculum, Classroom teachers are notalone in their pursuit ci jobs for students facingtransition. These agencies are playing a vitalrole.

School PersonnelBoth administrators and teachers have

worked cooperatively within the TransitionProject to develop Transition Plans for highschool and junior high students. TheAdministration has supported in-service for theirteachers and staff on transition issues, and theyhave encouraged them to attend a TransitionCourse given at Northern State University. In

this course teachers and prospective teachersare learning how to teach a functional curriculumso necessary for success in adutt life. Theyleave ttyr university ready to develop transitionplans.

EmployersThe Transition Project and the collaborative

agencies have begun to educate employersabout students with disabilities. Employers arenow more willing than ever to hire disabledstudents because of the cooperative efforts.Employers can feel secure abcut hiring thedisabled in our community because of thesupport that is being given to both the employerand student.

This spring an Employer Appreciation Teawas held. The mayor presented each employerwith a certificate of appreciation. The event was

10

well attended and viewed as a total cooperative

PawlsA parent support group has been established

by the Transition Project. A day In-seMce wasgiven to parents about Transition. Very positiveresults have been seen with parents ty both thesupport group and In-seMce. Parents are ableto intelligently discuss transition needs and makedecisions about their children's future. Theyhave become valuable members of the team,and they are helping educate the community.

These collaborative efforts have resulted inthe development of several committees workingtogether for the benefit of disabled students.The interagency Task Force is made up ofreprosentaiives from all agencies, the transitionteam, school personnel, parents, and students.The Transition Council has brought together theAdministration from the agencies and schools.A transportation committee was formed byseveral community leaders. Along with NorthernState University It is looking at the problem oftransportation for the disabled.

None of these groups can achieve the goalsnecessary for successful transition bythemsetves. Through cooperation andcommunication, a rural community likeAberdeen, South Dakota, can improve the qualityof life for rural disabled youth.

For more information contact the Transition toAdulthood Project, Northern State University, 1613th Avenue NW, Aberdt:en, 30 57401, (605)225-0037.

::4":;:::,x

RURAL VOCATIONAL REHABILITATIONIN THE TRIBAL SETTING

Joe Kelley, Project Director (Presenter)

The Kodiak Area Native AssociationVocational Rehabilitation Project (KANA VR) isone of 14 Native American groups receiving

funding from the Department ofEducatkm/Rehabilitation Service Administration.KANA VR provides vocational rehabilitationservices to Native American individuals living onreservations or within the boundaries of anAlaskan Native Corporation. The KANA VRProject provides rehabilitation services to Nativepeople living on Kodiak Island.

Kodiak Island Is the largest island in anarchipelago bounded by the Shelikof Strait andthe Gulf of Alaska, southeast of Anchorage,Alaska. This island group of 5,000 square milescontains approximately 900 miles of coastline. Atotal of approximately 4,000 Alaska Natives livein the City of Kodiak or one of the six coastalvillages, scattered around the Island. Kodiak'ssix villages are: Akhiok, Karluk, Larsen Bay, OldHarbor, Ouzinkie, and Port Lions.

Alutiiq was, and continues to a diminisheddegree, to be the Native language of KodiakIsland. Abundant marine resources havetraditionally been Kodiak's economic foundation.Those marine resources have supported theKodiak Native culture through at least 7,000years of continuous habitation.

Kodiak Island is located 255 air miles

southeast of Anchorage, Alaska. Anchorage, acity of 250,000, is the nearest urban area.Kodiak island is a mountainous islandapproximately 100 miles long and 30 miles wide.The six Alutilq villages located on Kodiak Islandrange in population from 75 to 400. Thepopulation on Kodiak Island is 16,000, whichincludes a Coast Guard facility.

The only transportation available from Kodiakto the mainland is airplane, ferry, or containership. All air transportation goes throughAnchorage, which functions as a transportationhub for our part of the state. Kodiak villages areserved only by air (single engine) and Kodiak'stransportation hub is Kodiak City. Air travel Is

1 1

very weather dependant as village air strips haveno instrument assistance. Kodiak has a fairlymoderate climate, but has many days of strongwinds, rain, fog, snow, and icing conditions(October through April) which make flyinghazardous.

Medical specialties such as Orthopedics,Neurology, ENT, Ophthalmology, and Psychiatryare not available on Kodiak. Specialists can onlybe seen by traveling to Anchorage or waiting fortheir monthly visits to Kodiak. The KodiakCommunity College provides some BA work,however, technical training other than generalclerical Is only available off island.

The primary business in Kodiak is fishing,support MACE, for the fishing industry, andsupport services for the Coast Guard Base.

Approximately 25 years ago, KANA wasformed as a Native American contractor to theBureau of Indian Affairs, Indian Health Service,end various other state and federal agencies.KANA's primary goal was the provision of healthand social services. However, in the past 25years, KANA has expanded to provide variousEducational programs, Indian Child Welfare,Alcohol Outreach, Tribal Operations, Culture andHeritage Services, and Vocational Rehabilitationservices. KANA employs approximately 100people and provides seneces from a centrallocatinn in Kodiak as well as a number ofemployees in each village. The key providers inthe village setting are Health Aides, CommunityHealth Representatives, Village Public SafetyOfficers, and Suicide Prevention Workers. Toaccomplish the goal of providing comprehensiveVocational Rehabilitation services within theTribal setting, KANA VR must maintain asignificant number of linkages.

For those who may not be familiar withVocational Rehabilitation, it is a federal programadministered under the Rehabilitation ServiceAdministration (RSA) in Washington, D.C. and isgenerally carried out by each state. However, in1986 Congress passed an amendment to the

Rehabilitation Act of 1973 which indicated that aNative American tribe could apply for andreceive their own monies directly from RSA toprovide vocational rehabilitation services on theirreservations. The reason for this amendmentwas the fact that due to the rural nature of mostreservations or Alaskan Native Corporations,state agencies could not or would not provideadequate services for Native American clienalSubsequent to this amendment, the NavajoNation and others of us have applied for andreceived monies to establish our own vocationalrehabilitation programs.

Whether State Vocational Rehabilitationagencies or Section 130 Projects by NativeAmerican Tribal Groups, vocational rehabilitationis basically the same. Our goal is to providecomprehensive vocational rehabilitation servicesthat will enable people with disabilities tomaximize their employability, independence, andintegration into the work place and thecommunity.

As indicated, our programs are generally thesame as far as eligibility criteria, however, thereare some difference% The federal programguidelines are quite broad but typically eachstate redefines those federal guidelines withinthe context of its own needs. KANA VR has alsodone this, but in a way to deal more effectivelyand give our people greater opportunities toreceive services.

I would like to talk about linkages that wehave established to assist us in providingVocational Rehabilitation services to AlaskaNative or American Indian people residing withinthe boundaries of our region. In thinking aboutlinkages, KANA VR really has to function andestablish linkages on at least fNe levels.These five levels are:

1. Village Level2. In-House/KANA Service Unit3. Community Level4. Statewide Level5. National Level

In reality, KANA VR cannot functionadequately to serve constituents withoutfunctioning on all fNe levels.

12

%age LevelTo provide the day to day services necessary

within our region the KANA VR staff must workclosely with people in each of the slx villages onKodiak island. Within each village there is aVillage Response Team made up of theCommunity Heatth Aide, Community HealthRepresentative, Village Public Safety Officer, andvarious other professionals/paraprofesslonalswhich may be working within the village at thattime. Members of thls team provide refemils toKANA VR and provision ot services directly toclients residing in the villages, such as medicalSOMCOS, counseling services, assistance incompletion of paperwork, etc. Also, each villagehas a school, usually 1(-12. It is very importantto work with the individual school principal orstaff to receive referrals and to provide servicesto students who may qualify for VocationalRehabilitation services. Finally, it is important towork with different community leaders andofficials who may represent the Tribal Council,the Village Corporation, or the city entity whichexist in each village. These indMduals can alsoprovide referrals and placement potential forclients living in the village.

KANA Service UnitWithin the KANA service unit, KANA VR works

closely with the various other departments suchas:

Medical, which assists us through theprovision of referrals, physical examinations,medical services, medical consuitation, andvarious other medically related services.

Dental, as they from time to time providereferrals, consultation, and restorativeservices to clients.

Alcohol Outreach provides referrals,screening and counseling services along withconsultation in the development of many ofour Vocational Rehabilitation plans.

Social Services provides supportive servicesto clients while they are receiving servicesfrom us.

Education works with us to assist in mutualdevelopment of plans for educational andtraining needs. In addition they are avaluable resource for funding assistance.

Culture and Heritage assist us to assurecultural appropriateness in developing ourVR project.

Community LevelAs KANA functions within the larger

community of Kodiak City, we also interfacewith a number of local agencies or businesseswhich are critical for the provision ofrehabilitation services. Some of the locallinkages are:

The Kodiak Branch of State VocationalRehabilitation which provides referral andconsultation. The local State VR

representative is a valuable resource as faras consultation concerning generalvocational rehabilitation and also a criticallink in carrying out a collaborativeagreemsnt which I will discuss later.

Kodiak Island Mental Health provides notonly referral, evaluation, and treatment, buthas generously provided us with MentalHealth consultation on a weekly basis tostaff cases at no cost to KANA VR.

Kodiak Island Borough Schools is animportant resource in referring youth whomay qualify for our program and providinga good environment within which to interactwith youth early on in their lives.

Kodiak Council on Alcoholism providesreferral services, screening, and treatment.As alcoholism is one of our primarydisabling factors, their services along withour in-house alcohol outreach prog am areextremely critical in the provi ;iun ofvocational rehabilitation services.

Finally, a very critical link in the chain arelocal Kodiak businesses who ultimately willemploy many of the people we work with.

13

State LevelThe next level of networking is the statewide

level. On the statewide level some very excitingthings have occurred. While we do interfacewith the State Arts Council and various otherentities, I am most excited about the interactionwith the State of Alaska, Division of VocationalRehabilitation. In June of this year, after severalmonths of interaction with the State VR Director,Keith Anderson, a collaborative agreement wasdrawn up between KANA VR and the State DVR.The exciting thing about this agreement is that Ibelieve it's one of the most far reachingcollaborative agreements between any Tribalgroup and State VR agency. The primaryattraction of this agreement is that it sets up aclose working relationship which allows theKANA Vocational Rehabilitation Program tofunction autonomously yet receive the benefit ofbeing closely linked with State VR and functionvery much like a state branch office. KANA VRwill use a similar statistical accounting system, asimilar case file and recording system which caneasily be transferred between KANA and thestate agency. According to this agreement ifKANA clients need to leave our region forservices, the case can be transferred to theappropriate state office and continue receivingVR services through the state system withouthaving to have their eligibility or plan reviewed.This agreement essentially allows for the state tospend State VR dollars to serve KANA clientswhile they are working with the State VRcounselor. This is a significant benefit to ourclients who no longer have to be made eligiblefor the state program or have a separate plandeveloped. Also, under the new agreementKANA VR will participate as a member of theState VR Advisory Council.

National LevelKANA VR also must interact on the national

level with the Department of Education and withthe Rehabilitation Services Administration tocompete for funding, receive technicalassistance and receive oversight. Nationaloversight for the Section 130 VR Projects isprovided out of Washington D.C. and theregional office in Seattle.

As indicated earlier, many levels of linkages

are required to function. However, this dynamicexchange of ideas and idormation provides avery fertile environment within which to function.I feel that tribal VR clients can receive the best ofboth worlds, 11130 VR Projects are willing to riseto the challenge of the many levels of linkageswhich are required to function uuccessfully.

For more information contact the Kodiak AreaNative Association KANA VocationalRehabilitation, 402 Center Avenue, Kodiak, AK99815, (907) 488-5725, (907) 488-2783 FAX

COMMUNITY OUTREACH PROGRAMCharles N. Schroeder, Executive Director (Presenter)

Marie Rose, Director of Adult Services

The aging people of Putnam County,Indiana, are active in their communities,Integrated and Interacting as the result of acollaborative effort of local aging servicesagencies.

The Community Outreach Program originatedthrough Putnam County ComprehensiveServices, Inc. (P.C.C.S.), a not-for-profit agencyserving citizens with disabilities in the ruralcounties of West-Central Indiana Programsserving the adult population are educationallyand/or vocationally oriented.

In January of 1989, Putnam CountyComprehensive Services, Inc., identified a groupof citizens with disabilities who were approachingretirement age. Through the normal process ofaging, some of these individuals weredeveloping health problems and becomingincapable of working a regular day.

Finding alternative services for this agingpopulation became one of the annual objectives ofthe adult program staff. Staff began investigatingprograms serving the aging citizens d PutnamCounty. They called health providers, socialworicers, community representatives and statefunding resources. Four areas of concernsurfaced:

1. There were no available services for the agingadult with a disability who wanted little or novocational programming.

2. With few exceptions, once an individual with orwithout a disabling condition entered a nursinghome, community contacts diminished

14

3. Aging individuals who resided with a familymember had little to no opportunity forstimulation outside of the home. Inaddition, families caring for an elderlyrelative had limited opportunity for relief.

4. Individuals without private transportationwere unable to participate in communityevents or activities.

It was clearly necessary to improve thequality of life for these people, and assurethem both the freedom of choice and theindependence of which they were capable.

With neither funding nor available services,staff discussed the issues:

needs of individuals within all four areas ofconcernmethods of integrating these individualsinto the communityservices available in the communityhow present services could be expandedbetter personnel use.

Staff met to discuss these issues withnursing home and community resourcespersonnel serving the elderly. They reviewedthe activities provided by each nursing homeand agency. -sigh each home provided awide range C 'es, there were variousproblems suc all groups, residents withwidely vont,. anctional levels, lack oftransr- ,d limited staff time.

otved: one Activity Director

could provide an activity for individuals fromthe other organizations, If P.C.C.S. couldprovide transportation. This would promoteintegration and community involvement forthose participating and simultaneously allowthe other Activity Directors more time to servethe remaining residents.

The time contributed by the ActivityDirectors would be used to sponsor one ormore activities each month. These activitieswere open to all individuals over the age offifty-four and included residents from eachnursing home, as well as Individuals withdisabilities and other citizens from thecommunity.

A partnership developed. Each nursinghome contributed a minimum of ten percent(10%) of their Activity Director's time to theproject. P.C.C.S. contributed the use of anexisting vehicle and driver. (Transportationprovided for uxtended trips is paid on a usagebasis by each organization. Transportation isalso available outside of normal work hours forprivate leasing. These monies supplement theoverall transportation costs while providing aneeded service to organizations without ameans of transportation.)

Riding a wave of enthusiasm, ActivityDirectors met the following week and oneweek later the project started.

The Community Outreach Programgenerates no additional costs. The programcoordinates and expands the non-vocationalservices of P.C.C.S. and the local nursinghomes. Activity Directors at each nursinghome and the Transportation Coordinator ofP.C.C.S. provide approximately fifteenintegrated activities each month.

The program provides a wide variety ofactivities both in and outside of the nursinghome: outings, shopping trips, visits to othernursing homes, fishing and boating trips, toursof new local industry, special events and otheractivities. McDonald's Restaurant, the MooseLodge, city and state parks, and the SeniorCenter provide space for bingo and othersocial events.

Although each organization is fundedindividually, the nursing homes and P.C.C.S.are required to have a written Individual Plan

15

for each person involved in their program(s).The individual Plan(s) include the strengths,abilities, limitations and needs of eachindividual. The Activity Directors determinewho will participate In each activity throughthis plan.

Although the program is currently notoperating as part of a curriculum, each monththe 'partnership' meets to develop a monthlyschedule of activities. The schedule isdetermined by: the goals of the individualPlan(s), available staff time, seasonal activities,community events, and individual preference.

Monthly meetings develop the schedule,review individual progress, resolve problems,share ideas, interpret standards andstrengthen the network/training partnership.The Activity Directors have higher morale andan improved job retention rate as a result.

Approximately seventy-five individuals haveparticipated in the program. Although thiscooperative venture is young, it has alreadyshown many benefits:

Participants with and without disabilitiesare integrated;

Participants are more interested in thecommunity;

Participants who were once isolated havebetter access to the community throughtransportation services;

Participants have a broader knowledge ofcommunity resources;

The quality of programs has improved,resulting in increased referrals to nursinghomes and P.C.C.S.;

Participants from the community arebecoming more Involved in the socialactivities provided by the nursing homesand the community;

Community resources such as the SeniorCenter, McDonald's, and the parks areused more;

° 1

Participants are more independent;

Participants help develop their individualPlans and give input to community leaders;

Participants are more functional;

Surveyors are pleased that the organizationis actively pursuing and providingintegration;

The morale and motivation of participantsand staff is greatly improved;

An innovative and creative network ofservice providers now exits.

This program is limited, however, by the lackof funds to fully develop and to expand itthroughout the service area. The project staffcontinue to pursue funding sources, especiallyfor trans-portation services. It is anticipated thata sliding fee scale may be necessary forcommunity participants to offset the costs ofsupplies and transportation.

This program can be easily duplicated in anycommunity which has existing services for theaging population. It is more economical to useexisting services by cooperating with otherorganizations than it is to initiate a new service.

The following is a list of steps to develop andimplement the Community Outreach Program:

1. Identify organizations that provide services toindividuals with similar needs, such as familysupport groups, organizations serving indMdualswith disabilities, nursing home facilities,churches, and community resources;

2. Meet over lunch; invite the administrators, aswell as direct providers of the services;

3. Discuss issues and develop a list of 'commonneeds';

4. Introduce the strategy;

5. Get a commitment from the Administrator orCEO of each organization;

16

6. Set up a time for the direct providers, such asthe Activky Directors or Social Workers, to meeton a regular basis;

7. Discuss the specific expertise of eachProvIder;

8. For the first month or so, develop a simpleschedule of three or four activities using thisexpertise;

9. Implement the schedule, discuss problemareas and make adjustments as needed;

10. Expand the program by developing aschedule that provides more activities to moreparticipants and uses the creativity of theproviders;

11. Keep activities age appropriate;

12. Monitor and modify the program as needed;

13. Encourage the group to share problems andsolutions openly;

14. Advertise and seek funding to expand.

This program is best summarized byMargaret, a program participant: 'Sadie and Ilived next door to one another all of our lives.We were separated when she moved into onenursing home and I to another. Except for a fewvisits when my daughter came, I never got tosee Sadie. I was so tired of looking at the samepeople. Now, through this program Sadie and Iget to visit eve.y week, I get a chance to seehow Greencastle is changing, I get to dodifferent things and I am happier. I no longerfeel like I am too old to enjoy life, but that I aman older person who can go out and enjoythings around me. I may be too old to walkplaces, but because of this program I am stillable to get out°

For more information contact Putnam CountyComprehensive Services, Inc., 630 TennesseeStreet, Greencastle, IN 46135 or call (317) 653-9763.

EMPOWERMENT AND AGINGAnne Cook, Project Director (Presenter)

Stipend Based Opportunities for Los kicome&lefty: Strategies for Rural Programing

The Foster Grandparent Program wasestabu `led on a national level In 1965, and theSento 4mpanion Program followed in 1975.Both programs respond to the poverty andisolation commonly experienced by low incomeelderly. The progrims enroll income eligiblesenior citizens and provide hourly, tax-freestipends in exchange for a twenty-hour per weekwork commitment. In Missoula, the FosterGrandparent Program has been operational fornearly 20 years. The grant for the MissoulaSenior Companion Program was awarded sevenyears ago. I e competition for these Actiongrants is signs ant and the funding availabilityhas not kept puce with the developing need. It

is increasingly difficult for local communities tosecure Action grants, and considerable localfinarcial support is often needed to meet thedemand for services. We are fortunate inMissoula, to have secured ongoing federalAction grants as well as federal Actiondemonstration and challenge grants. TheMissoula Foster Grandparent Program was oneof 25 projects selected nationwide, on the basisof outstanding programming, to participate in the25th anniversary celebration of the program.Local program staff have also designed trainingand retirement protocols that have beenpresented at national and regional Actionconferences and which are used by projectsnationwide.

There have been very significant changes inthe aging population since these programs wereoriginally developed. The aging population ismuch less homogeneous, with more diverse anddifferent needs. Changes are reflected in theresults of a systematic analysis of the entry-levelcharacteristics of persons enrolling in the FosterGrandparent Program. This nationwidelongitudinal study assessed the age, gender,education and handicapping conditions of newlyenrolled participants. The information providesinsights into changing patterns within the elderlypopulation, underscores the impact of poverty

17

and clarifies the potential roles of persons withdisabilities. Because of the age and povertyrestrictions for program inclusion, newty enrolledparticipants are increasingly older, report moredisabilities, have fewer years of formal educationand are more often female. One of the mostnotice lble trends is the significantly Increasedenrollment of persons with disabilities.

Those changes create new managementissues for both the Senior Companion andFoster Grandparent Programs. It is more difficultto maintain a stable corps of trained participants,and recruitment and training of replacements aremore time consuming. ft is more challenging toarrange support services such as transportationand individualized training. Jobs have toaccommodate the needs and skills of personswith more disabilities and less education thanthe national mean. Retiring program participantsand the concomitant loss of stipend dollars is anissue of growing importance. Scarce federaldollars underscore the growing importance ofsecuring local funding in a non-competitivemanner. However, in spite of some challengingobstacles, the programs manage to exceedexpected service levels and maintainconsiderable community support. The programsmeet those challenges and are able to providestructured, quasi-employment situations byimplementing a variety of strategies which aresuccessful in rural areas.

Ind iv id ual iz ed Training, Placement andAssessrnent

In order to meet placement and trainingobjectives, indMdualized job descriptions arecreated for enrolled participants. In Missoula,Montana, over 75 senior citizens are enrolled inthe programs and, through individualized jobdescriptions, annually provide over 70,000 hoursof service to children, homebound elderly oradults with developmental disabilities. Jobdescriptions are created jointly by the work sitesand the program office and are minimallyevaluated on a quarterly basis. Mandatorygroup in-service training is held monthly and

2 3

ongoing indMidualized training is provided.Participating senior citizens are 'apprenticed° tokey agency personnel so that daily support,supervision and training is possible. Theprogram director maintains CCM, contact withboth the senior participants aod the supervisorypersonnel. Regular monitoring, job coachingand reinforcement enhance the likelihood ofsuccessful placement. Overall programevaluations are conducted annually and are anintegral component of program management.

NetworkingPrograms such as these demand

considerable local financial support and acommitment to the programs' goals andobjectives. Commitment is enhanced throughsystematic involvement in agencies and issuescomplementary to the programs' objectives.Program staff are involvad in various communityboards and councils, attend hearings, writesupport letters on pertinent social issues andmaintain ties with diverse university andcommunity contacts. In turn, communitymembers assume roles on program advisorycouncils. The focus is on 'getting the job done*through sharing the power and the information.Financial support, recognition, transportation,training and employee health maintenance areissues of importance to a wider pool ofconcerned individuals and supporting agencies.The grassroots support for these programs issignificant, largely because the programs provideopportunities for intergenerational interaction.That support is particularly critical when dealingwith limfted economic resources. Fundingincludes federal Action grants, and financialsupport from the city, the county and the UnitedWay. In-kind support is generated through avariety of resources.

18

Management Philosophyit might be unusual for a non-prolit venture to

include specific management philosophies as akey stater oy. However, in an era when agenciesam competing for the time and attention ofcommunity contacts, attention to the details ofmanagement is impottart Ilmelines arerigorously honored. Agendas for meetings areprepared and mailed well in advance. Agendasare followed and meetings close at thedesignated time. When community help isrequested, the tasks and the timelines are clearlyA;entified verbally and In writing. Trainers meetwith program staff prior to training sessions anddiscuss strategies, possible problems andcottngencies. The emphasis Is on long-range orstrategic planning rather than crisismanagement. Program staff must understandthe organizational structure of affiliated agencies--an important issue when designing appropriateplacements for the Foster Grandparents andSenior Companions. Expanding andcoordinating the information base empowersboth the seniors who participate in the programas well as other key individuals. Choices andoptions are carefully delineated and decisionsmade after reasonable consideration. Theoverall emphasis is on competence, notcompetition.

In conclusion, these programs illustrate theability to develop and use the skills of eligibleparticipants when other employment options areunavailable. In a rural setting and with limitedfinancial resources, these programs have beenable to expand to meet more needs.

For more information contact Missoula AgingServices, 227 West Front, Missoula, MT, (406)728-7682.

ti

COOPERATIVE EXTENSION SYSTEMA NATIONWIDE NETWORK OF RESOURCES

W.E. Field, Professor (Presenter)

The Cooperative Extension System providesa natural, well-established network todisseminate disability-related information to ruraland farm (implies ranch, as well) residents withdisabilities. In addition, the Extension Systemhas the potential to play a significant role indeveloping greater public awareness in ruralareas concerning disability issues, such as theimplications of the ADA. There exists no otherresource or educational network in the ruralcommunity that is so well organized orrespected.

In 1898, the United States Department ofAgriculture (USDA) hired an energetic agricultureteacher, Seaman A. Knapp, to help farmers ofsouthern Louisiana raise more rice. His

approach was to use demonstration farms toallow local farmers to clearly see for themselvesthat certain production practices were moreproductive than others. His motto was: 'What aman hears, he may doubt; What he sees, he maypossibly doubt, but what he does, he cannotdoubt.'

In 1903, Knapp was re-assigned to helpreduce the severe boll weevil damage toLouisiana and Texas cotton. On a 70-acre farmnear Terrell, Texas, using funds borrowed fromlocal businessmen, he began to demonstratepractices that were effective at controlling theboll weevil. The demonstration was successful,additional staff were added in 1904, and theconcept was taken to other parts of Texas. Bythe end of the year, Knapp and his agricultureteachers had held approximately 1,000 meetingsacross the south and convinced over 7,000farmers to establish demonstration plot. Theseteachers were called °USDA Agents' from whichthe present title County Extension Agent comes.

Knapp developed a vision of having anagricultural specialist or "agent' living andworking in every county in the United States.These agents would network and have acommon mission of improving agriculturalproduction. In 1906 with a one million dollargrant from the General Education Board

19

endowed by J.D. Rockefeller, his dream beganwith the hiring of the first agents in Texas andAlabama

During the pre-World War I years, the youthcomponent of Knapp's vision developed fromlocal corn-growing contests and demonstrationplots to become the 4-H Club. Formallyrecognized in 1911, the 4-H Club quir.ttlybecame the most-visible and best-known ofExtension's activities. By 1918, over 500,000young people were enrolled in 4-H Clubs.

In 1914, the Smith-Lever Act was passedwhich formally established and partially fundedthe Cooperative Extension System. It was setupas a formal partnership between local, state andfederal agencies with the educational resourcescoming primarily from the land grant institutionsestablished by the original Morrill Act signed byLincoln in 1862 and the Agricultural ExperimentStations established by the Hatch Act of 1887. (Asecond Morrill Act was signed in 1890 addingadditional land grant colleges to serve the blackpopulation.) By the end of 1918, over 2,400counties in the United States had agriculturalagents and almost 1,800 had HomeDemonstration Agents who demonstrated moreeffective ways of processing and storing locally-raised food.

The Extension System has continued to growfor the past 75 years and has proven to be oneof the lead players in rural development. In mostcounties in the United States the 'Extensionoffice' and *Extension Agent' have becomeinstitutionalized, but are often taken for granted.The Cooperative Extension System still remainsthe single most important source of agriculturalinformation for farmers and is also one of theprimary sources of information in rural Americaon a wide variety of rural development and familyLssues.

The structure of Extension has remainedrelatively unchanged over the past 75 years, withsupport coming from local, state and federalsources. Its mission is to serve the needs ofAmerican agriculture and the nation's rural

people and communities. In some cases thestrategies used hays also proven successful Inurban Extension protects which have becomemore prevalent In recent years.

Extension staff consists of a network ofcounty-level Extension Agents who are part ofcounty government and serve the needs of aspecific county. They are selected from a poolof candidates approved by each state's LandGrant Institution, which also provides technicalsupport services. Extension gubject nest.specialists are located at the state and national.level and are responsible for providing training,technical resources, publications, andconducting applied research.

The primary program areas of Extension aredivided into four areas:

1. Agricultural Production (the most important)2. 4-H and Youth (the most visible)3. Home Economics4. Rural Development

Typically, every county in the United Stateshas at least one Agricultural Agent, 4-H Agentand Home Economics Agent. These agents areprimarily resource people and assist incoordination of many local events such ascounty falai and 4-H clubs. Each year theseagents are involved with conducting tens ofthousands of local meetings across the country,distributing millions of pieces of educationalmaterial and providing one-on-one assistance tohundreds of thousands of individuals.

Since the beginning, the Extension Servicehas been concerned about the whole person. It

has willingly addressed all types of humanneeds. During the early days, survival wasquestionable for many farm and rural familiescontinually threatened by pests, drought, andthe other unpredictable characteristics ofagricuiture and rural life. As farm productionstabilized, programs expanded to include effortsto improve the standard of life in ruralcommunities by improving the quality andnutrition of foods grown and processed by ruraland farm families, and by improving ruralleadership development. Topics such as pestcontrol, sanitation, clean water, personalhygiene, child care and development, anc.,

20

literacy wera on the agendas of many earlyExtension meetings. During the GreatDepression and World War II, Extension wasactive in Increasing food production and localself-reliance, and improving rural health. Morerecently, Extension has been deeply Involved insuch issues as youth at risk, child care, ruralemployment, rural education, health care, wastemanagement and resource conservation. Evendrough Individuals with disabilities were not anearly target population for Extension, there Isconsiderable evidence that they benefitted byExtension programs.

Clearly, Extension could have a much moresubstantial role in improving the quality of life ofIndMduals with disabilities living in rural areas.The service delivery mechanism is in place, it isrespected by rural residents, it has the potentialfor developing linkages with other serviceproviders and, most Importantly, it has theinternal motivation to serve.

In the 1990 Farm Bill, Congress authorizedfunding to establish the USDA ExtensionEducation and Training Assistance Program forFarmers with Disabilities. The program has twocomponents:

1. Education and Training Demonstration Grants

a

b.

C.

This program is designed to supportcooperative agreements/programs betweenthe Extension Service at the state level andprivato, nonprofit, disability organizations toprovide on-the-farm education and technicalassistance to indMuuals with disabilities andtheir families who live on farms or work atfarm-related occupations. To date, eightdemonstration sites have been selected inIndiana, Illinois, Iowa, Vermont, New York,Louisiana, Wisconsin and Montana (whichserves Idaho and Wyoming). Grants will beused by the demonstration sites to initiate,expand or sustain programs that:

provide direct education and technicalassistance.provide educational programs for ruralprofessionals and service providers.provide on-the-farm assistance in identifying,selecting or fabricating assistive technology.

d. Involve rural service providers in early

identification of farm and rural families whocould benefit from program service&

a mobilize rural resources to address disability

issues.

2. National Grant for Training, TechnicalAssistance, and Dissemination

ibis component is intended to support anational program of training, technicalassistance, and information dissemination tosupport the rAaie demonstration prolects. Thenational program is to bo conducted by a singleLand Grant institution in cooperation with theNational Easter Seal Society.

In the Spring of 1991, USDA signed acoopertnive agreement with Purdue University'sBreaking New Ground Resource Center to fulfillthe national program component.

21

With implementation cif the USDA ExtensionService Education and Training AssistanceProgram for Farmers with Disabilities, theCooperative Extension System has taken a clearstand on its commitment to Improve services torural residents with disabilities and ensure theirfull participation in rural life. With the recentpassage ci ADA, the initiative is extremely timelyand will draw upon the many newly-avallableresources.

For more information contact the BreakingNew Ground Resource Center, Purdue

University, 1146 Agricultural EngineeringBuilding, West Lafayette, IN 47907-1146, (317)494-1191.

2 7

kk:tyk.

zsA

Building Linkages, Collaboration, Networks

THE COMMON THREADSStart small and make your successes visible.

Transportation is the most common rural problem; develop alternatives to publictransportation and use transportation inventively. For example, assistive technology canbe delivered to consumers by van

Informality is important in rural settings. Rural people are interested in knowing whoyou are as an individual, not just as a professional. Recognize that indMdual agendasoften don't coincide with those of agencies or professionals. Don't be in a hurry; useyour time flexibly.

c'

Networking activities should be person-focused. Find out who does what well.Become familiar with local political, social, educational, cultural, and economic systems.Develop state, regional, and local resource directories.

Encourage formal and informal interagency, consumer-driven, collaboration. Build non-traditional coalitions and advocacy groups of interagency councils, consumer grcups,state advisory councils, business groups, community groups, schools, hospitals, homehealth care providers, extension offices, churches, fire departments, and sports teams.Recognize the equality of services and respect persons and agencies. Ensure reciprocity--group give and take develops cohesiveness and shared viewpoints. Collaboration maybe the key to accessing some funding sources and avoiding duplication of effort. Shareinformation, names, and problems. Invest time in looking for programs with compatibleneeds and resources. (For example, coordinate assessment activities with the localschool system.) Look for groups that can help to meet each others' needs, such assenior volunteers caring for young children. Establish formal funding mechanisms toensure that collaborative efforts result in follow-up activities. Although much rural workis done at a personal level, formal working relationships are also necessary to datifyexpectations and to satisfy outsiders (such as funding agencies).

Acknowledge collaborative relationships and reward the participants.

Take advantage of available technology: Find and use toll-free numbers to accessinformation. Use computers and telephones for networking and conferencing. Use publicradio and television to broadcast information and to foster disability issue swareness inconsumers, providers, and the public.

Local contacts are necessary for establishing successful outreach programs. Explorethe common interests you share with others in the community. View personal andprofessional friends and acquaintances as resources. Work at public relations; use foodas an enticement, attend and participate in cultural and social events (dances, meetings,powwows, etc.). Join social organizations and attend their meetings regularly. Make

22 -

Interagency meetings an opportunity for social interaction. Work with students and offerto be a resource for projects and presentations. Get consumers kwolved in publicawareness fairs.

Hire locally.

Be "general practitioners"; there aren't enough "experts" In rural areas.

Rural areas need information and referral services in multiple formats, especially inassistive technology.

Each rural community is an individual; don't generalize among communities.

Small Group Facilitators: Mike Jakupcak, Tom Seekins, Julie Clay, Shawn Clouse, PhillipWittekiend (Rural Institute on Disabilities), Michael Regnier (Summit independent LivingCenter, Missoula), Charles Page (Community Medical Center, Missoula).

23

INTEGRATING TRAININGWITH SERVICES

FROM IVORY TOWER TO BARN RAISING.A RURAL UNIVERSITY REHABIUTATIONPROGRAM IN PUBUC SERVICEDouglas A. Dunlap, Associate Professoi.Program Coordinator (Presenter)

INNS is the desirable community role of arehabilitation education degree program in apublic university - particularly when the universityis located in a rural community, in apredominantly rural state? Delivering significantrehabilitation-related services to the community,while simultaneously educating futurerehabilitation servIce providers, has becomecentral to the operation ci the rehabilitationprogram at the University of Maine atFarmington. How this function developed -concepts, strategies, and methods - and thedetails of resulting rural community serviceactivities undertaken by this university program,are presented in this paper.

The metaphor of a barn-raising is employed.Bam-raisings were community events in whichresidents departed from usual roles andresponsibilities to contribute their talent andenergy to a neighbor, to accomplish a task thatno one person could do alone. Bam-raisingswere essential to the economic, social, andcultural well-being of the community.

Program Nature and HistoryThe Program in Rehabilitation Services at the

University of Maine at Farmington wasestablished in 1971 to meet human resourceneeds for developing state and federalvocational rehabilitation initiatives, and to provideappropriately prepared service providers in thecontext of deinstitutionaliza-tion of the state's twopsychiatric hospitals. Over its 20-year history theprogram has developed the followingcommunity-oriented strateglas: (1) a campus-based supportive employment program forpeople with disabilities; (2) a rehabilitationeducation outreach project bringing courses andtraining events, particularly in psychiatricrehabilitation, throughout Maine - literally fromthe Canadian border to the sea; (3) an advisorypanel of community agency representatives tocommunicate service needs to the university; (4)

27

an internship program through whichapproximately 30 students per year spend up tofour months in rehabilitation-related agencies,mostly serving rural clientele.

A special dimension of the program is itsundergraduate nature. While there are some 50undergraduate rehabilitation programs in theUnited States, their relationship to rehabilitationas a profession, and to a sequence inrehabilitation education, is still in a formativestage. At UMF the program follows curriculumobjectives outlined by the National Council onRehabilitation Education (1987). The proactivenature of the program has aided recruitment ofprospective service providers into highereducation. As issues of disability develop a highprofile across the state and nation, the programattracts both the life-experienced individual whodecides to pursue a rehabilitation career, andthe graduating high school student who haslearned of such careers through school studiesor community service. We are able to bring toour profession capable individuals who mightotherwise have had limited accessibility torehabilitation if graduate school was to be therehabilitation education threshold.

In spite of its undergraduate status, theprogram offers training events to people beyondthe bachelor degree level. Participants inoutreach courses and institutes have includedpeople with masters degrees, Ph.D.'s, andM.D.'s. This is done by providing continuingeducation units for professionals, linking withstate agencies such as the Maine Bureau ofMental Health, to issue professionally recognizedcertificates. There are also linkages withgraduate programs in the state to facilitatestudent movement towards graduate school.

Tha Mahe ContextThe Farmington campus is one of eight in the

University of Maine system, and has 2,000students studying liberal arts, education, and

human seMces. The town of Farmington has7,500 people. Maine has 1.2 million peoplespread over 33,000 square miles. Canadaborders Maine to the north and east, the AtlanticOcean to the south. Ninety percent of the landis forested, and the pulped paper industry is thestate's leading industry. It is a state of smalltowns, where a town-meeting form of localgovernment prevails.

Challenges to rehabStation service delivery that

are familiar to most rural seMce providers arefound in Maine: transportation, communication,isolation, and the cultural conflicts between thevalues of self-reliance and those ci paessionalservice udlizzAlon. Naksalistic dimensions add tothe picture. This is a state with a long winter.Some people Ibm on islands off the coast or onremote peninsulas. Othem reside in remotelogging comunities, some from which it is easier,or even necessary, to leave the state, or even thecountry, to travel to services.

Strategies for Medal° the Commtsifty

Supportive EmploymentA supportive employment program has

operated at the university since 1987, serving morethan 50 clients. As the largest employer in thetown of Famington, with nearly 350 employees, itwas essential to any local and regional supportiveemployment initiatives that the university

demonstrate the viability of this rehabilitation

concept M a community within a community theuniversity has a wide variety of occupations - retailsales, food service, technical trades, printing, childcare, clerical, media, for example. Further, theuniversity environment is one in which, potentially,diversity as related to disability would berespected

The university was approached by stateofficials in the fields of rehabilitation, mentalhealth, and mental retardation - all of whichincidentally are represented on the rehabilitationdegree program advisory committee. Theirinquiry followed a number of initiatives by facultyto meet local, regional, and state officials toinform them of our community service interests,and a number of productive student internshipsin all three areas. A model proposed was thehighly successful Hospital Industries Program, a

28

Maine urtan project that utilized evening andnight shift positions in a 24-hour facility (Balserit 1991).

The rehabilitation faculty embraced the ideaof a corpus supportive employment program,and formed a planning group that included thecampus president as a member. The projectwas placed under administration in theorganizational structure, with faculty acting in anadvisory role. Modifications were made in theprogram design to fit a rural context. Mostevening shift and night shift work was eliminated,as in a rural setting these may create isolation atwork, and transportation difficulties. Supervisionof clients was the responsibility of thedepartments in which they worked. A programcoordinator and job coach assist supervisors.

Positions were made available In the printshop and a number of offices, along with foodservice and physical plant. Throughout thedevelopment and operational stages of theprogram, faculty functioned as advocates andresources. Presentty the program is expandinginto the rural region surrounding the university,with fob development occurring in suchoperations as a ski area an houes drive away.

Outreach Courses and TrainingSince 1983 a summer institute In rehabilitation

has operated with both service providers andprogram students as target population. Since1985 there have been outreach courses andtraining events offered in geographic regIonsthroughout the state, in response to communityagency requests. In a rural state, instructortravel to various sites facilitates accessibility inthe broadest sense. Out of the three majoruniversity terms annually - fall, spririg, summer -two contain such courses. Locations have beenliteralty from the Canadian border to the sea.

Most training events are offered as universitycourses for tuition. This method permitsstudents as well as service providers toparticipate, enables faculty to include mosttraining as in-load teaching activities, andenables payment at tuition rates - all favorablearrangements. For example, a recent outreachcourse in psychiatric rehabilitation drew 30participants 'rom a 60-mile radius, for 15 weeks,at a tuitivn cozt of $192 per person.

31

A special emphasis of such courses hasborn psychiatric rehabilitation. One of thefaculty has specific training in this area, and the:university is the major training resource In thestate for this aspect of rehabilitation. Theoutreach activity developed from a combinationof faculty initative and stale inquiry. It Is acuriosity worth noting that initial stale interestwas in a university-based training, whereas theuniversity advocated for the inclusion ofsignificant off-campus service in the project.State mental health officials are now draftingrequirements that people delivering psychiatricrehabilitation services must complete specifieduniversity training events.

Outreach activfties serve the university well.They function as recruiting activities, and provideimportant exposure for program students. Theyalso establish credibility and respect for theuniversity as a public-seMng, publicly-supportedinstitution. Importantly, they keep therehabilitation program in touch with local andstate needs.

Advisory CommitteeAn advisory committee to the rehabilitation

services degree program has been formed asanother community-university linkage. Atthoughthere is no university or other mandate toestablish such a group, faculty chose to do so.Membership includes representatives fromrehabilitation, substance abuse, mental health,elderly services, corrections, mental retardation,and a governor's commission on supportiveemployment. There is a student memberrepresenting the campus rehabilitation studentorganization, and representatives from threeother university system campuses, including amaster's degree program in rehabilitation.

The group meets twice a year on the campusand advises on issues that may be appropriatefor the university curriculum, or other universityconsideration. Equally important, the individualmembers are important resources who makeguest presentations to courses, providepracticum and internship positions and createchannels for initiatives such as the supportiveemployment and outreach training projectsdescribed earlier. Agencies represented by thisgroup are an important core for an annual

rehabilitation awareness day, a day of seminars,symposia, and displays about rehabilitationservice.

Field Experience: &sal Pracdua and WarshipsA 120-hour practicum and a 450-hour

internship comprise the program field experiencerequirements. Students are encouraged tobecome involved with rural-serving profectsstatewide. Field experiences are structured tofoster student development of positions, ratherthan placement In the usual sense. They mustcomplete pre-field seminars that expose them toa variety of services, and prepare them to markettheir competencies. Approximately 60 studentsper year complete field work, and they haveserved in every county in Maine. Over half areoffered jobs at internship sites - remarkableconsidering the undergraduate nature of theprogram.

The outreach orientation of field work hasresulted in an extensive network of universitycontacts - further opportunity for collaborativeventures. ft also provides important exposurestatewide for rehabilitation education andrehabilitation services.

Networking MethodsUnderlying the effectiveness of the initiatives

described in delivering services to localcommunities, are a combination of external andinternal networking methods. All strategiesdescribed result from faculty initiatives at makingcontact with service providers and administratorsinvolved in rural service. These contacts lead tocollaborative ventures, which in turn result inexpanded networks. All facutty serve on one ormore local, regional, or statewide boards orcommittees related to rehabilitation.

Program faculty are experienced serviceproviders who have worked in rural areas asdiverse as Appalachia, Pacific Islands, theAmerican southwest, and rural Maine. Whilesuch experience may not be a requirement forthese initiatives, it had caused all to recognizethe community good will and potential thatawaited initiative.

If networking external to the university wascritical, so, too, was campus or internalnetworking. Administrative and peer support

29 3 2

Is essential to community service, yetrehabilitation Is a bit of an anomaly on anundergraduate campus. Our uniqueness hascaused us to educate our campus aboutrehabilitation, which may be fortuitous. Facultyhave been scrupulous about informingadministration about public activity, and haveinvolved students heavily in such activity.Current and previous presidents have met withstate officisls to explore and confirmcollaborative relationships. The currentpresident sits on the Governor's SupportiveEmployment Committee.

Annually the program conducts campusprograms on disability. Faculty have soughtout campus governance responsibilities, suchas faculty senate and curriculum. The campushonors program has a rehabilitation courseavailable to all majors. As the university facesresponsibilities related to Section 504 of theRehabilitation Act, and to the AmericansDisabilities Act, the rehabilitation faculty isregarded as a significant resource, and hasfacilitated formation of a campus committee toadvocate and plan for accessibility.

Community-Centric ValuesAt the core of whatever success this

program has achieved is the assumption thatthe university, with its unique humanresources, has a vital neighbor role to play forits rural constituent communities. A secondassumption is that relationships are afoundation for action. It may apply in other

types of communities as well, but surely it isfrequently the case in rural communities thatwho you lye must be established ahead ofwhit ISHLAa.

The essential dimensions of neighborlinessand personal relationship are surely animportant core for successful initiatives tobring universities into rural public service.

Grateful acknowledgement is extended tocolleagues Dr. Robert Pullo, Chairperson,Department of Human, Health, and FamilyStudies; Dr. Elisabeth I. Kalau, AssociateProfessor of Rehabilitation; Professor Roger L.Wing, Associate Professor of Recreation;Darlene Williams, Administrative Assistant

For more information contact theRehabilitation Services Program, University ofMaine at Farmington, Farmington, ME 04938-1911, (207) 778-7095 or (207) 778-2221 FAX.

ReferencesBalser, R., Harvey, B., & Hornby, H. (1991).Supportive employment - a focus on jobcoaching, Rehabilitation Medicine Service, MaineMedical Center, 22 Bramhall St., Portland, ME04101.

National Council on Rehabilitation Education(1987). Position statement on undergraduaterehabilitation education. RehabilitationEducation, 1(1), 19-27.

THE LIFE QUILTERS PROJECTDonald K. Kincaid, Project Coordinator (Presenter)

Ann Krueger, Life QuilterCharlotte Metz, Life Quilter

Susan Underwood, Life Quilter

The Life Quitters Project uses theAppalachian resourcefulness as exemplified bythe traditional craft of quitting. In the hands ofan experienced quitter, nonfunctional materialsare assimilated and transformed into aninspirational, yet functional, work of art.

30.

Similarly, The Life Quilters Project strengthens,develops, or combines community resourcesthrough the provision of a comprehensive andintensive consultation service to staff, parents,professionals, and individuals with challengingbehavior throughout West Virginia The Life

33

Qui kers Project applies state of the art teszhing,assessment, and management technologies todevelop existing service providers capacities tobetter meet individual needs. The projectoperates from a person-centered values baseand a broad ecological perspective. The projectsupports individuals with mental retardation andchallenging behaviors, who may be at risk oflosing a community placement or may not bemaking progress towards greater independence,productivity and community integration.

Project MissionThe Project emphasizes the following

outcomes as valued accomplishments in anindividual's life:

realizing greater participation in thecommunity,

developing more satisfying relationships,

making choices in their daily lives,

gaining respect and dignity through fulfillingvalued roles, and

achieving competencies in personal andsocial skills.The ultimate goal of the project is to produce

a more positive future for the focus individualand strengthen the overall service deliverysystem.

Project BenefitsThe impact of the Life Quilters Project has

been extensive, invoMng all levels of the servicedelivery system in West Virginia:

At the program management level, theservice organizations are assisted indeveloping resources, policies, and practiceswhich maximize the effectiveness of theirprograms.

At the program design level, organizationsare assisted in planning, implementing, andevaluating programs for more effective living,working, and training environments.

31

At the program delivery level, direct-servicestaff, supervisors, and specialists learneffective techniques, within a person-centeredvalue base, for working with individuals withchallenging behaviors.

Finally, at the focus person level, theindMdual with challenging behaviors has anopportunity to more fully develop valuedabilities and characteristics, to succeed inhome, work, or school, participate incommunity life, establish relationship, makechoices, and gain personal dignity andrespect. Overall, the focus person can live arich and positive life whether or not changesoccur In the person's behavior.

Project ApproachThe activities of the Life Quilters Project are

conducted in a series of four phases, each withspecific objectives. A significant amount ofconsultation time (100-500 hours) may bedevoted to accomplishing the objectives of thefour phases: PLAN, LEARN, DU, andEVALUATE

Phase I: PLANDuring the PLAN phase, the Life Quilters staff

are engaged in referral, screening, orientation,and agreement activities.

Referral - Referrals may be initiated byanyone within the community (i.e., casemanager, parent, client, service provider, etc.).Criteria for referrals include the focus personbeing identified as exhibiting complex behavioralchallenges, being at risk of losing or notreceiving community placements, or not makingprogress towards independence, integration, orproductivity. Currently, referrals are restricted toa class of individuals served as a result of acourt decree, but plans are underway to makethe Project available for all individuals withdevelopmental disabilities in West Virginia.

Screening - During the screening process,project staff are assigned to review theinformation, identify all of the importantindividuals or stakeholders involved with thefocus person, clarify the request and theservices provided by Life Quitters, and review allinformation with other project staff. Project staff

3

jointly determine the appropriateness of areferral

Odentation - Project staff provide orientationregarding the philosophy, goals, and function ofthe Life Quitters Project. Orientation activitiesmay include providing written material, groupinservices, or individual inservices.

Agreement - Prior to initiating the actualprovision of services, staff meet with the keymanagement stakeholders to obtain a profile ofthe stakeholder organizations, define the desiredpositive outcomes for the agencies, Identify anyproblematic or facilitative systems issues, agreeupon the goals of consultation, and identify contactpersons and timelines for Phase II activitie& Theseactivities culminate in the development of aMemorandum of Agreement which identifies theroles and responsibilities of all parties involved inthe Life Quitters process. This agreement isnecessary to clearly define the activities,invarement, and support which will provide thefoundation for the remaining project phase&

Phase II: LEARNDuring the LEARN phase, sten are involved in

a variety of activities aimed at bringing all of thestakeholders to a better undastanding of the focusperson and the goals of the project. Projectactivities include developing a personal profile,developing a Life Quilt personal futures plan,assessing the setvice delivery system, conductinga complete functional analysis, and identifying awood( group.

Personal Profile - Project staff bringstakeholders together and use group graphicstechniques to produce a personal profile of thefocus person. The profile addresses thestakeholders relationship to the focus person,the person's history, health issues, people andplaces in the person's life, choices the indMdualis or is not able to make in his/her life, roles thatare respected or disrespected, what works ordoes not work, and overall themes. This sessionprovides an opportunity for an overallassessment of the individual and hisenvironment.

Petsonal Futures Plan - The information fromthe Personal Profile is used to develop apersonal futures plan or 'Life Quilt°. Thestakeholders formulate a 'best case' vision of the

32

focus person in three to five years. The focusperson's presence and participation in

community We, oppottunities to make choices,oppottunities to gain respect and dignity,development of relationships with friends andfamily, and opportunities to exercise areas ofpersonal competence are addressed.Environmental community and agency resourcesand bafflers are examined. This activity affectsthe thinking, attitude% and vision of thestakeholders as It relates to what is really hvortantfor the focus person and for identng newdirections to pursue.

Functional Analysis - Staff interviewstakeholder% review data and records, observe thefocus petson in his erwironment, and videotapeselected situation& This information is used todevelop a functional analysis of the focus person'sproblem behaviors. The project staff may thenmake recommendations for environmental changesor develop needed intervention plans.

Service Delivery Assessment - This actbrity is anindepth analysis of the focus person's dailyactivities and the services provided for him/her.Through task analysis, daily routines of We areassessed by examining each component of theday, determining the focus person's strengths andneeds with regard to the tasks, determining thegoals and teaching strategies currently used,analyzing staff training needs, and, finally,

addressing systems issues that affect the deliveryof services.

Work group - Based upon the work nowaccomplished, a group of IndMduals must beidentified to begin to address issues and solveproblems. This work group is established withclearly defined rules and responsibilities and withclearly identified guidelines for conducting effectiveand efficient meetings. With the formation of awork group, Phase Ii is complete.

Phase I: DODuring the DO Phase, the wotk group identifies

goals, develops a work plan,presents the work planto stakeholders and management for approval, andinitiates the actions in the work pian.

Watt plan - The work plan indicates desiredoutcomes, needed actions, responsible persons,and designated settings and timelines for theactions to occur. The work plan is presented with

a summary cf Phase II work to the management(s)for their approval. Al stakeholdets and criticalmanagement staff sign the work plan to Indicatetheir support of the goals and methods of theproject. The work plan Is also presented to thefocus person's interdisciplinary team for approvaland may be incorporated kito the person'sindMdualprogram plan. Monthly reports on the progress ofthe work group are completed by the Life Quittersand distributed to management and stakeholders.

On-site Teaching - During Phase HI one of themajor project actkities is the training of indMdualsproviding services to the focus person. Individualsmay be trained in general behavior managementprocedures, guidelines for heracting with thefocus person, specific behavior programs, orteaching the daffy life routines. For the most part,training is conducted in the natural environmentand makes use of community-based, positivebehavioral support techniques and videotechnology.

MOM V: EVALUATEThe final phase has three goals; to evaluate the

project's progress, to determine whether to 'close'the project and to produce a final report

Evaluation - The progress of the project isreviewed every 30 days from the establishment dthe work group. The Life Quitter staff conduct a°peer review' of project progress each month andteam problem-solve solutions to specific situationsand problems. Approximatety every 90 days all ofthe stakeholders assemble for an update on thespecific project activities and successes. LifeQuilters staff continue to document ail projectoutcomes and accomplishments, and conductinterviews and surveys to determine projectsuccess as most or all of the kientified objectivesare completed. The formal project evaluationassesses 31 areas related to the focus person'squality of life and personal development, staff andorganizational changes, and the team'seffectiveness. This evaluation also measures theparticipants' perceptions of the number of identifiedobjectives met and whether the project should bedosed.

Project Closue - If the management andstakeholders feel that the project objectives havebeen reached, then a decision is made regarding

project closure. Project staff coal-we to provideassistance and consultation to the project as It isimplemented by the stakeholders. If further in-depth consultation is required, another work planis written and signed.

Firtal Report - A final report is prepared detailingthe background, methods, and accomplishmentsd the project, along with a plan for the future. Thisreport is produced in a narrative format by LifeQuilters staff with the cooperation and participationof the focus person and the stakeholders. Thisnarrative story is then distributed to kiterestedIndMduals throughout the system. This narrativeserves to reinforce the successful efforts ofcooperating agencies and also allows for thecommunication of effective techniques and ideasthroughout the system.

Cunard StatusThe Life Quitters Project is completing its

second year of support. Currently, there are 19active projects involving 29 different state agenciesand organizations.

What We've Learned

What doesn't work:

'Traditional' short-term consultation from the'smart guys".

Narrow consultation that does not address allof the variables affecting the individual's life.

Being viewed as 'another pair of hands'instead of as a resource to assist the agencyto develop their own capacities.

What does work:

Including all of the stakeholders in planning,decision-making, carrying out tasks,and evaluating the outcomes of their efforts.

Allowing everyone to freely and openlycommunicate their opinions and points ofview between and within agencies.

Expanding the range of possibilities andencouraging creativity.

33 3 (3

Focusing on the person and encouraginghis/her participation/leadership.

Culturing commitment from all levels of anagency/organization.

Providing service agencies with an °Imparterview of their services and programs, whichimproves the quality c seMces and makesfor more effective advocacy.

Cultivating local talent within the work groupand within the communty.

Focusing on the work plan (long-term,proactive) instead of on frequent crises(shortrterm,reactive).

Empowering the local work group to makesubstantial changes In the support providedand in the system itself.

For more information contact the UniversityAffiliated Center for Developmental Oisabillties,West Virginia University, 918 Chestnut RidgeRoad, Suite 2, Morgantown, WV 26506, (304)293-4692 (304) 293-7294 FAX.

THE FAMILY CAREGIVER PROJECTJames R. Cook, Ph.D.

C.D. Fernald, Ph.D., AssociateCatherine A. Gutmann, Dr.P.H.,

Education and Support for Families of RuralPeople with Disabilities

Many individuals with severe, chronicdisabilities require comprehensive care fromothers. For example, severe mental illness,developmental disabilities, and the dementiasand physical limit: )ns of aging may requirelifelong support and periodic acute care. In

the past, many of these needs were providedthrough institutional pIncement, but familieshave taken on greater responsibility in recentpars.

Family caring for a severely disabledperson can be difficutt, and current trendshave increased the demands on families. Forexample, the population is aging and thenumber of families caring for impaired elderlyrelatives has increased. Because ofimprovements in technology, individuals withfragile medical conditions are suiviving longer,but with increased needs for long term carefrom families and others. Deinstitutionalizationand shortened hospital stays require familiesto play a larger role in treatment and longterm care. While women have traditionally

34

Associate Professor of PsychologyProfessor of Psychology (Presenter)R.N., Assistant Professor of Nursing

been the caregivers, they are now more likelyto assume career responsibilities and return tothe work force. Many families are faced withcaring for both growing children and agingparents.

Service Trends and Rural AmericaWhile these trends have affected the entire

country, rural America is particularly sensitiveto these changes. Rural areas frequently havefewer services for families coping withdisabilities. This lack of services means thatrural families are likely to experience moreintensely the difficulties of caring for animpaired family member.

On the other hand, rural communities oftenhave a tradition of individuals knowing andcaring about each other. Individuals in small,close knit communities come to depend oneach other for help with the difficulties theyface. In the absence of a large collection ofhuman service agencies, rural people oftendepend on churches, neighbors and familydoctors, rather than specialized agencies orprofessionals.

3 7

Many interventions have been devekkped tohelp family caregivers get the information andsupport they need. Yet many of these programsassume there are sufficient numbers ofprofessionals to conduct the programs. Theygenerally target groups of caregivers who face aparticular disability. Unfortunately, in rural areasthere may not be adequate numbers of peoplewith the same disability in the same communityfor these interventions to be useful.

The 'Caring Fan Nes' ApproachThe Family Caregiver Project at University of

North Carolina at Charlotte has developed anapproach to helping family caregivers which Isparticularly suited to the needs of small ruralcommunities. Central to this approach is aseries of Manuals that provide practicalinformation to family members. The 'CaringFamilies' Manuals also help caregivers obtainemotional support from other family members,friends, other caregivers, and professionals.

There are several reasons why the 'CaringFamilies° approach Is particularly suited to theneeds of families caring for disabled relatives inrural communities. First, it can be used easilywith different types of disabilities. Mostintervention programs for famity caregivers targetone particular type of disability. Creation of agroup for education or support than requiressufficient numbers of people with the samedisability. The Caring Families Manualsemphasize the common elements in caregiving,regardless of the type of disability. While theManuals provide information specific to particulartypes of disabilities, the emphasis on commonthemes (and parallel structure of the Manuals)can help families learn from and support oneanother. This makes the Manuals suited to smallcommunities which may lack the numbers tohave more specialized groups. Thus, familymembers from the same church, business, orneighborhood who know each other already, cancome together to use the Caring FamiliesManuals as they find out more information andprovide support for each other.

The second way this approach is well suitedfor rural needs is that it does not rely onprofessionals to lead goups of caregivers. Sincetrained professionals are often in short supply in

4

rural communities, the Caring Families Manualsinclude a 'Leader's Manual' which providesdetailed instruction and experiential activities tohelp untrained individuals lead groups of familymembers. Other caregiving families can oftenprovide the best help by virtue of theirexperience.

The third way in which the Caring Familiesapproach is suited for rural communities is thatit is family-centered. Traditional family values areemphasized in the Caring Families Materials.Families are viewed as the experts on familycaregiving. They know their loved one betterthan anyone else. They can benefit from theinformation and experience of professionals andother caregivers, but they must teel in charge ofthe care of their family member. The materialsalso emphasize the value of invoMng the wholefamity, not just one member. The extendedfamily groups which exist in many ruralcommunities can benefit from this approach.

The Caring Families ManualsA series of four Manuals has been developed.

Three of the Manuals address the needs ofpeople who care for family members withspecific problems: mental illness, developmentaldisabilities, and aging. In each of theseManuals, several chapters discuss issues whichare common to all caregivers, regardless of thecondition or disability which affects the familymember. Other chapters contain informationspecific to the particular problems which therelative faces. The Manuals were designed to be°user friendly' and include many practical tips oncoping with day to day problems. The materialsare fully coordinated so that families can useand study the Manuals easily with other families,regardless of whether the impaired relatives havethe same or different conditions. The Leader'sManual can assist groups who are meeting foreducation and support.

The Manuals can be used as guides andreference books. Families can get an overviewof information about caregMng, about theirrelative's impairment, and about how to cope.They will not find all the answers but shoulddiscover ways to find additional information.Other resources are listed at the end of eachchapter. A loose-leaf format makes adding new

35 3S

Infonation, magazine articles, pamphlets, Wesfrom conferences or meetings easy. Caregiversoften find it helpful to get together with othercaregivers to compare notes and share tips. Agroup of caregivers can go through the Manuals,one chapter at a time, discussing and sharing.

Throughout the Manuals, the notion ofempowerment is emphasized. To succeed,caregivem need to feel they are in charge.Empowerment knplies a basic respect for theintegrity of the caregiver. Caregivers with a senseot empowerment are better able to meet

professkmis on an equal basis, with both bringingspecific information and skill together to provide the

best care possible. Empowered family membersrarely tolerate the demeaning or patronizingattitudes too often held by professionals. TheCaring Families Manuals acknowledge the diversityamong caregivers. Sections can be scanned easilyso that readers can decided whether to studymaterial in depth or skip over familiar or irrelevantmaterial. Resources are listed so that interestedreaders can easily find more detailed 'donation.The Leader's Manual c4fers a full array of choicesso that the group can be tailored to members'needs.

The materials can be copied and shared. TheManuals were developed through the support ofthe Office of Human Development Services of theU. S. Dspartment of Health and Human Services.ôJl d the materials ere part of the public domain,and organizations are encouraged to copy andshare them.

TopicsThe major topics covered in each of the

Manuals are:

Succeeding at CaregivingHelping Families SucceedFinding Sources of HelpReducing StressCoping with Common Dif v.wities

Basic Information about the DisabilityTypes of ProblemsKinds of Services

Coping with Day to Day ProblemsCreating a Safe and Supportive Home

Managing BehaviorsDealing with Specific.PrJblems

Financial and Legal Concerns

Planning for the Future

The Development of the MaterialsThe materials were developed by a

multidisciplinary team from the University ofNorth Carolina at Charlotte, including facultymembers from psychology, nursing, specialeducation, human services, and social work.They reviewed the professional literature tobuild on existing work.

The team also relied heavily on theexperiences of family caregivers andprofessionals who regularly work with families.Team members attended consumerconferences and listened to family members.Family advisory groups provided °expert'advice to the professional team about contentand writing style.

conclusionThe Caring Families Manuals are a unique

resource for rural families who are coping withdisabilities. The Manuals can help provideeducation and support for groups of otherwiseisolated people who face different types ofdisabilities. Helpful information abouteveryday coping, emotional support, andstarting education/support groups can reducebarriers to rural families facing disabilities.

For more information contact The FamilyCaregiver Project, Department of Psychology,The University of North Carolina at Charlotte,Charlotte, NC 28223, (704) 547-4758.

ReferencesBiegel, D.E., Sales, E. & Schulz, R. (1991).Family caregivino in chronic illness. NewburyPark, CA: Sage Publications.

This work was supported by grant No.90PD0153 from the Office of HumanDevelopment Services of the U.S. Departmentof Health and Human Services.

36 33

DISABILITY RIGHTS AND ADVOCACYBill Malleris, Agency Director

Robin DePagter, Outreach Director (Presenter)

The Southeastern Minnesota Center forIndependent Living (SEMCIL) has developedconsumer-drivenAccess/AdvocacyCommisslonsin Rochester, Winona, and Red Wing, Minnesota

Rochester is the main office of SEMCIL; RedWing and Winona are fully stalled branch officesdeveloped to serve the rural areas ofSoutheastern Minnesota Each branch officehas two professional staff and two or more peervisitors to serve three counties in their respectiveareas. Located in farming communities, theseoffices receive support and guidance fromRochester, but remain autonomous to meet thevaried needs of persons with disabilities whochoose to reside in rural counties.

To ensure consumer representation andinr at, each outreach office has a ConsumerAdvisory Council and an Access/AdvocacyCommission to provide policy direction forprogra mming. The membership on eachAccess/Advocacy Commission consists ofpersons with disabilities or their family members.This not only reflects SEMCIL's philosophy ofconsumer control, but also ensures that theissues addressed are those that are important toeach community.

The purposes of the Access/AdvocacyCommissions are threefold:

A To provide an arena for persons with disabilitiesto learn the necessary skills to advocate forthemselves, and on a local, state and nationallevel.

B. To provide the opportunity for consumers totake an active role in their community andadvocate for positive change.

C. To address accessibility and advocacy issuesrelevant to each rural area.

This creative approach provides local control,consumer focus/development and completeconsumer involvement. The consumers havethe responsibility to identify, plan, and implementthe goals identified by the Commission.

37

BEST COPY AVAIIITLE

The first SEMCIL Access/AdvocacyCommission began in Rochester in 1989 and theCommission was initiated in Red Wing in the fallof 1989. In the spring of 1990, theAccess/Advocacy Commission was formed inWinona. Each outreach office used a formatestablished and tested in Rochester as itsblueprint. One major component of the formatwas modified to meet the needs of the ruralarea: IndMduals from the smaller communitiessurrounding the branch offices were included inthe membership. This ensured that theconcerns of individuals residing in au ruralcounties were represented.

The accomplishments of theAccess/Advocacy Commission have beenexciting and varied in each of the communities.The Red Wing Commission initiated an accessawareness program in the fall of 1989, proposingthat the city install 40 curb cuts. To date 20have been installed and 20 will be installed in1991.

Simultaneously, work began on extending theCity of Red Wing's current Dial-a-Ride paratransitsystem. With assistance from SEMCIL'sAccess/Advocacy Commission, the City of RedWing received 60 percent of the funding toexpand the existing service from the MinnesotaDepartment of Transportation. TheAccess/Advocacy Commission assisted the cityin raising the other 40 percent. Hours of servicehave been substantially increased.

The Commission and Red Wing CommunityEducation co-sponsored a training session forconsumers and human services professionals onuse of the Dial-a-Ride system. A disabilityawareness training session for bus drivers wasalso implemented.

Unexpected close partnerships with RedWing city officials have occurred since theinception of the SEMCIL Access/AdvocacyCommission. City officials have askedcommission members to be involved in regularCity Council meetings, the City Safety Council,and the Chamber of Commerco. Red Wing's

i-)

Human Rights Commission has asked theAccess/Advocacy Commission to develop aguide to accessible businesses, restaurants,theaters, etc. Other partnerships havedeveloped with Community Education and withRed Wing Advocating Change Together, adevelopmentally disabled advocacy group.

The Commission In Winona has had similarsuccess. It also began work simultaneously ontwo initiatives: obtaining 33 new curb cuts In thecity, conducting consumer bus training andteaching disability awareness to bus drivers.

Commission members developed goodworking relations with the City of Winona plannerand the city engineer. This allowed theAczess/Advocacy Commission to propose newcurb cuts in strategic locations in Winona

Meetings with the City Clerk and Winonatransit officials led to a joint decision to holdconsumer bus training for consumers withdisabilities, and disability awareness training forbus drivers. The SEMCIL Access/AdvocacyCommission and the city of Winonaco-sponsored a bus training session in July,1990. Seventeen consumers and 10 interestedprofessionals attended the session. To minimizeapprehension, consumers practiced using thebus wheelchair lifts. The drivers became awareof various disabilities and the different types ofwheelchairs. Changes proposed andimplemented included: larger route signs onbuses, seats removed to increase space forlarger wheelchairs, and seat belts for thoseindividuals who prefer to transfer into apermanent bus seat.

There were many constructive results: aposith al relationship with the City ofWino. ised ridership (prior to the trainingsession ,onthly average lift use was zero tothree rides per month; since the training, theaverage is approximately eighty rides permonth); major changes were made to all busesto accommodate persons with disabilities.

The Access/Advocacy Commission hasencountered one major obstacle. There are fewtrained personnel to provide xechnical assistanceto facilities on improved accessibility. Eachbranch office is only qtaffed by two full timeindividuals who are responsible for coordinatingand providing the full realm of SEMCIL services.

To develop this program to Its full potential,Access Technicians will be trained to enhanceand assist with implementation of Commissionrecommendation& Two Access Techniciansrecruited from the Commissions will be broughton as contract staff in 1991.

These individuals will have developed thenecessary skills as Commission membem toeffectively advocate for accessibility changes intheir communities. They will also receiveadditional training on ADA and federal coderequirements so they can assist in developingmodification plans. Using a proactive approach,the Access Technicians will provide the followingservices to businesses and organizations:

1. An on-site evaluation will be conducted withthe organization's permission.

2. Trained personnel will determine necessarymodifications and an accessibility plan will besubmitted to the organization for review andinput.

3. For organizations choosing to completemodifications, the following resources will beavailable:

Persons knowledgeable of codes andregulations at the federal, state, and locallevels.A solid working relationship with the BuildingSafety Department.A list of distributors and cost figures.Assistance in planning the most cost effectiveway to make changes.Training for architects and contractors.Availability of experts in the field.

4. On-site training for personnel on disabilityawareness & sensitivity will be provided.

In late 1991, the Access/AdvocacyCommission will be implemented in our thirdbranch office in Owatonna.

All SEMCIL programs are available, at nocharge, to any person who has a permanentdisability.

Approximately 20% of the disabled populationhave been served through SEMCIL's Outreach

38 41

Offices. The rural outreach initiative is still in theinfant stages for SEMCIL In the mod fouryears, an extensh outreach effort will be madewhich will result ki permanent offices and staff inall eleven counties that SEMCIL serves.

Access/Advocacy commissions will beimplemented in each county and technicianshired during the phase-in process. Weanticipate that we will reach many additionalconsumers through this effort.

39

Access/Advocacy dkectly affects vprodmately75-100 consumers h each area However, theindlred effects and the numbers of individualswho have, or will, benefit from these services faroutnumber those we we able to track.

For more information contact SoutheasternMinnerti CIL, Inc., 1306 7th Street NW,Rochester, MN 55901, (507) 285-1815.

4 2

Integrating Training with Services

THE COMMON THREADS

Not only designated °trainers" provide training In rural areas; most people involved withdisabilities train consumers, family members, staff, related professionals, or communitymembers at some time.

For effective training, people need to see themselves as experts participating in acommon effort; use participatory formats. Establish credibility. Get consumer input ontraining needs and delivery methods; personalize training. Use consumers' talents; thebest trainers have first-hand knowledge. Personal experience produces expertise andgives training validity. Get local community members to provide training. Identify localand regional training resources.

Know your territory, loecil concerns, and local customs. Be sensitive to local andcultural issues. Don't generalize training across communities simply because they sharea geographic area; adapt curriculum and methods to individual needs.

Training is on ongoing process, with new areas and strategies evolving constantly.Assess training needs, and provide for ongoing training evaluation and participant pre-and post-training input. Relate the kna ri to the unknown, the familiar to the unfamiliar.Be flexible; don't have a rigid agend.* r time, sequence of instruction, or curriculum.Use a variety of methods: support groups, peer counseling, round table discussions,public tv, in-home training, disability-related periodicals, transition guides. Exploreunusual content, such as adapted aquatics or driver's education. Provide transitiontraining for consumers and their families at every transition point in a consumer's life.Expand the rural program's ability to provide activities recommended by occupational,physical, and speech therapists.

Keep it simple. Train in the consumer's language; what are the consumer's operationaldefinitions? Train consumers in their homes or deliver training from vans. Anticipate thatpersonality conflicts are always a possibility; trainers and consumers aren't always goingto like each other. Allow people to share their experiences; don't just talk at them.

Coordinate inservice training with other agencies in the community. Trade localexpertise instead of spending money to bring in outside "experts". Rural agencies canprovide outreach in-service training to agerx 'Is in other rural communities or can sharetraining resources. Use local hospital resources, such as 01's and Prs as trainers.Share in-service training with local nursing homes. Use junior college, vo-tech, collegeand university faculty as staff trainers (while educating them on disability issues andtraining needs). Use consumers and local vendors as staff trainers. Allocate fundsspecifically for staff training; this will make training a priority. Integrate staff training intoinformal situations, such as Itaff meetings. Emphasize stairs existing competency;training is an opportunity to aoquire additional skills. De-emphasize weaknesses.

40

43

Establish open communication among providers, consumers, families, communitymembers, etc. Educate consumers on the rights and responsibilities of communitymembership. Train the public in disabEty awareness, Including psychiatric disability. Lookfor consumers in the business community who can help build aconsumer/provider/business coardion, invite local business people to public disabilityawareness meetings; educate them on the Americans with Disabilities Act. Alert the localmedia to disability-related events (e.g. national and state observance weeks).Disseminate information to local schools.

Train special audiences, such as personal care attendants, lawyers, doctors, etc.Psychiatric therapists can provide training on psychiatric disabilities for other disabilityprofessionals.

Small Group Facilitators: Mike Jakupcak, Kathleen Miller Green, Sue Forest, PhillipWittekiend (Rural Institute on Disabilities), Barbara Larsen (Summit Independent LivingCenter), Charles Page (Community Medical Center, Missoula).

'<$.7& "WOW akVp.V.Pt,g1.VAMIMWs"R .AM:VRAW

41

4 4

SUPPORT SYSTEMS

DEVELOPING A RESPITE PROGRAMIN A RURAL COMMUNITY

Maribeth Culpepper, L.M.S.W. (Presenter)Patricia Tompkins-McGill, Marcy Stimmel and Judith E. Stevens

Respite care is a relatively new concept. ithas grown out of the national movement of the1970s to de-institutionalize and provide treatmentsettings for persons who are disabled which areleast restrictive and which most closely resemblestandard community IMng. The purpose ofrespite care is to provide an opportunity forfamilies of indMduals who are developmentallydisabled to get away for an evening, a weekendor several days; time to *recharge' or to providebackup to families in emergency situations, suchas the illness or hospitalization of a famitymember.

There are several models for providing respitecare. Most are agency-based (where e agencytakes the lead in recruiting and training providersand linking families with providers) and many areurban and center based. In the urban models,providers are trained in groups and this ispossible because of the larger population fromwhich to recruit providers. In center-basedmodels, a building or part of a building isavailable and staffed some or all the time so thatfamilies who need respite have easier access tothe service.

In large, sparsely populated rural areas,center-based urban models for provision ofrespite and recruitment and training of providersis often not possible or appropriate. Manyfamilies as well as potential providers live inmore isolated settings, some without electricity,telephones, indoor plumbing or heat other thanwood. People do not concentrate in largenumbers in one location, as they do in cities,and villages or isolated homes are often manymiles apart. Transportation is often a problem.These factors make a centralized location forrespite less practical and accessible. They alsocontribute to difficutty recruiting and trainingproviders; newspapers, radio stations, personaland telephone contract are harder over such ascattered population; the number of providerswho reed training at any one time often is too

45

small for group training; and centralized locationfor trainings are hard to schedule for the mutualconvenience of all providers. Training needsand formats may differ, too, since providers maybe family members or close friends of the familyfor whom they will be providing respite, thusneeding less individualized training concerningeach client. Many providers do not read or writeand many may be Spanish speaking, with limitedunderstanding of English even when material ispresented verbally.

Yet rural families need respite from the careof their famity member who is disabled at leastas much as urban families do, and providertraining is a critical elemen* in the peace of mindof families when they leave their family memberwho is developmentally disabled in the care ofanother person.

Family members must feel reassured thattheir family member is safe and confident thatthe caregiver is competent to deal with theirfamily member's particular needs.

Families also need dependable relief fromthe intensity of attending to the needs of theirfamily member who is developmentally disabled.Rospite care which involves paid providers, whenit is available, is often limited because of fundingconsiderations. Volunteer respite providers tendto either quickly tire and become unreliable orprove less than qualified to address caresystems, to break down as caregivers, admittheir problems, and demonstrate their need inorder to obtain respite.

The philosophy of respite, on the other hand,is to strengthen families who keep their familymembers who are developmentally disabled athome through prevention of stress and crisis,when possible, and through consistent,dependable support. The purpose is to supportfamilies before there is unnecessary stress orbreakdown. Families with this kind of supportare more likely to remain a functional unit. Asecond major iunction of respite is to have

4 6

providem available kr a crisis situation whenemergency respite is necessary to reduce furtherstress for a family.

During 1987-88, Las Cumbres LearningServices developed a model tor the provision ofrespite services In a large rural areas of NorthCentral New Mexiso. This model was developedthrough our experience with a tri-culturalpopulation (Hispanic, Anglo and NativeAmerican) in a large rural region. Familiesserved ranged from those who live in veryisolated situations with few economic resourcesto upper-middie class families living in morepopulated communities. Input from a statewideRespite Network is also reflected in the model.Many aspects of the model may also bepertinent to respite services in non-rural areas,as well, and/or can be adapted to suit the needsof the geographic region where respite servicewill be started.

Any interested individual, network ofindividuals, or agency can begin a RespiteProgram in any community. Most often existingagencies serving individuals who havedevelopmental disabilities add respite to therange of other services they provide. However,another agency or a network of parents couldalso begin a respite program in a localcommunity. Clear commitments from individualsinvolved in the initial effort should be obtained asto who will do which step of the process.Written working agreements are helpful if severalindividuals and/or agencies are working togetherIn the effort.

How to stan

Needs Messmer*The first step for anyone interested in starting

respite services is to determine if there is a needin the local community for services. Starting arespite program Is no easy task, and you want tobe sure there is a need for such a program.Also, funding sources will want to see that aneed exists before considering funding a newprogram in any community. Start by:

defining the geographical region you want toserve (will it be limited to one town, county,or region?)

46

defining the population you will serve (i.e., willyou serve only indNiduals who aredevelopmentally disabled or will you providerespite services to other types of disabilities?:families ci people with mental healthproblems?: families of elderly stroke victims?:etc.) While the Las Cumbres model is forfamilies with developmentally disabledmembers, many aspects of it could easily beadapted to other populations.Then conduct a needs assessment for the

population and within the geographic region youhave defined.

A needs assessment can be conducted inone or a combination of several ways:

a form which is widely disseminated throughoutthe community and collected and collated by acentral person or agency. Forms can bedistributed to local Associations for RetardedCitizens, special education classrooms in publicschools, community based agensies servingthe developmentally disabled, local churches,public health clinics, hospitals and doctorsoffices, local human service agencies (such asSocial Services), and/or state agencies such asHealth and Environment Department or HumanServices Department. Some information can begained through the CO-OP System,Developmental Disabes Dtvision, Health andEnvironment Department, concerning who inyour region is on a waiting list for respiteseMces. If at all possible, determine who ineach setting will be responsible fordisseminating and collecting the form andgetting it back to a specified central collatinglocation.

Set a date for return ot the form and put thatdate on the form. It is most effective if the fon iscombined with personal or phone contact forfollow-up, since mail returns of forms received,even with self-addressed stamped envelopes tendsto be slow. Follow-up phone calls, meetings, orpersonal contact will glean a wider response.

media, articles in newspapers, spots on theradio, flyers grocery stores, schools, daycareMOWS

7

a widely publicized meeting of interestedindividuals

informal data collection from interestedindividuals

In all needs assessment formats, find outhow many people are interested, if they haveever or are now receiving respite throughsome auspices; how much they project theywould use respite and time periods whenrespite is most needed (i.e., after school,weekends, evenings, for a week at a time,etc.); and about their willingness or ability tohelp pay for services. You will need the name,address and phone number of the respondentso you can reach him/her and you need toknow the name, age, and type of handicap(including whether or not they are ambulatory).Information about the type of care the disabledfamily member will need is very helpful inplanning the program and recruiting andtraining providers and matching them withfamilies.

It is also helpful to find out if the familyknows of anyone who would provide respite orbe interested in being trained as a provider,since, especially in rural regions, recruitingproviders can be one of the biggest problems.Las Cumbres'needs assessment also askedwhat kinds of training families felt providersshould have in order for families to feelcomfortable leaving their disabled familymember with them. This information helpswith the design of provider training formats,which impacts total respite program costs.

Decide How and Where Respite Will BeProvided

There are several options for how toprovide respite. You can choose one or acombination of the following choices. Theideal is to create a continuum in order to offerfamilies as many options as possible, but oftena small, sparsely populated area must chooseone.

'Center-based' respite is just what it soundslike: respite care provided in a *center` or acentral location. This might be accomplishedin several ways.

Respite CenterSome agencies in larger towns have a

building designated solely for the provision ofrespite care which is staffed 24 hours a day,seven days a week (or other regular, specifiedhours) so that respite is always available(providing there is an empty bed) to familieswho need it. The number of beds in a centerbased respite program may vary according tothe needs and the funding available.

Designated Respite Bed(s) in an AlreadyExisting Location Unless a respite programexists in a fairly good-sized town with enoughpeople needing respite and an adequatefunding base, a center set aside solely forrespite is sometimes impractical. Othercenter-based options can include a bed (ormore) set aside in an already existing location.

One possibility is designating extra spacein an existing group home as a respite bed.The advantage of this arrangement is thatthere is already staff at the group home whomay be able to function as providers, thusaverting the need to find a provider in a hurry.Other advantages are the already structuredprograms available in group homes and dayprograms, from which respite clients maybenefit.

There are disadvantages to this. Therespite person(s) must not make the totalnumber of people exceed the number forwhich the group home is licensed. Clientroom requirements must be met for licensing.Another drawback is that children cannot beserved in group homes for adults, so a bed ina group home would be limited to use byrespite clients age 16 and up.

Home-basedHome-based respite services are

sometimes called 'provider based' models andare often most practical in non-urban areaswhere center-based services do not exist; orhome-based can be combined with smallcenter-based programs to create a widerrange of options for the provision of respite.Home-based services are considered most'normalized' for the provision of respite tochildren. Home-based services can beprovided in:

47 4

the providers homethe family's homea combination/choice of the above

Providers can be hired as staff personswork on a contractual basis (but usually notboth, because the Department of Labor does notallow employees of agencies to also work for theagency on contract). ff you are consideringhiring a current employee to also do respite,check DOL regulations concerning payingindMduals who work more than 40 hours aweek.

Other IdeasVolunteer vs. paid providers. Someprograms operate strictly with volunteers;others pay their providers.

Provider on call. Some agencies hire orcontract with a staff person or contractedperson to be available eon-caill in the eventof an emergency respite need.

Before/after school. Limited respite needscould be met by exploring utilization of a daycare center or school facilities for before/afterschool respite care. Such an arrangementcould be utilized on a planned basis, or ifresources are available to have appropriatestaff available, even on a `drop-ing basis.

Transportation as respite. Many families,when they identify what would provide abreak for them, say that the transportation oftheir disabled family member to programs,appointments, etc., could provide them witha lot of relief. Consider this as one option forthe provision of respite. Look intolegal/liability issues and providers' drivingrecords first. Families should request andagree to this form of respite and should signa release concerning their family memberbeing transported by a provider. Providerswho drive clients should have their ownliability in Arrance; agencies sponsoringprograms where this is an option need proofof that insurance as well as a copy of theprovider's drivers license and driving record.

48

Respite for indMduals who are disabled.Adult and adolescent disabled Individualsmay need a break from their families (or thegroup homes in which they live) from time totime. Respite services might be used toorganize social outings, find another place forthe person to stay for awhile, or otherwisemeet the needs of these disabled persons.

Anomie Respite HoursWhite you are considering the budget, you

will doubtless have in mind a total number ofrespite hours which you hope to and can affordto provide. Allocation of these respite hoursamong families needing and requesting respitecan be a problem, primarily because there arenever enough hours to meet all requests. Toallocate hours fairly, Las Cumbres has devised asystem to determine a family's need based onthings such as; family structure; geographicisolation and behavioral concerns, independentliving skills, and mobility of the family memberwith a disability.

Wailing ListWhen you are unable to provide requested

respite services because of funding constraints,applicants must be put on a waiting list.Keeping accurate records on wait listed familiesand their unmet needs is an important function:you also have data which will support requestsfor more money to provide respite to thosereceiving no or limited services.

In addition to keeping internal records andentering data into statewide systems, agenciesshould refer waiting families to other respiteresources as well as to other needed services.Las Cumbres touches base with respite waitinglist families quarterly in order to update theirneeds and let them know the status of theirposition for potentially receiving respite.Emergency respite could also be offered towaiting list families in emergency situations.

Emergency UseEmergency respite is a problem for several

reasons in a rural setting. one dilemma is mostgeographic regions is defining 'what is anemergencyr. A good bit of discretion isitquired from the Respite Supervisor in

4

exercising judgement about this matter.However, we have defined some guidelines. Thefollowing factors may be considered inassessing the nature of each family's emergencyrequest:

A. Is the client being abused or neglected?

B. Is the client at risk of abuse or neglect?

C. Does the client exhibit behavior problems thatpose a threat of injuring self or others or thatresult in destruction of property?

D. Has an act of God occurred (fire, flood,tornado, etc.) which has resulted in disuse ofprimary residence of the client?

E. Is there recent hospitalization or seriousillness of primary caretaker, immediate familymembers, family member who is disabled?

F. Is the dient in danger of institutionalization ora move to a more restrictive environment?

G. Is there other extraordinary family stress (e.g.,potential illness, hospitalization or otherabsence of primary caretaker if respite is notprovided)?

Other problems are insufficient respite hoursand unavailability of providers for emergencysituations. Total number of respite hoursavailable for a year are always limited and arenot usually sufficient to reserve for an emergencyrespite fund, so unless families can afford aprivate pay situation, funding for emergencies isa problem. Furthermore, without a center-basedmodel which is available all the time, a respiteprovider may not be available for familyemergencies.

Las Cumbres has sought to deal with theseproblems by (a) making a bed available in agroup home for emergency use when a providercan't be found or when this is the mostappropriate setting for a respite client (however,remember, this is not a resource for clientsunder age of 16; (b) encouraging families whoare or the respite program to plan respite use sothat some of their allocated hours are available

49

for emergencies, should they occur; (c) reservinga small number of HED funded respite hours foremergency respite use; and (d) encouragingproviders to accept emergency respite cases.

At Las Cumbres, the emergency respite fundIs available only to families who are not alreadyon the respite program. ibis decision was madebecause there Is already a growing waiting listfor respite rtetvices, and families who are notalready receMng some allocated respite hours ina year are likely to be most in need in the eventof a true emergency. Other families' unusedhours may be added to the emergency fund asthe year progresses if needed. The RespiteSupervisor monitors emergency hours use andthe need for and availability of additional hours.If no emergency hours are available in ourprogram and a family is truly in need, LasCumbres looks for other resources by contactingother respite agencies in the State.

Publicize the ProgramOnce you have identified families who want

respite, have decided what model(s) to use andknow about what it will cost and where to getthe money, it is time to publicize the program.If your resources are as limited as most newrespite programs are, you may already haveidentified all the families you can serve and maywant only a short newspaper article announcingthe service.

However, the purpose of publicity is threefoldin letting the community know the program existsto:

A. Families who need the service know it's thereand how to link with it;

B. People who might be interested in beingproviders can be recruited; and

C. Potential funding sources (donations, etc.)can be solicited.

As you publicize the program, other groupsthan the one you are currently targeting whohave a need for respite may also be identifiedand considered for service in the future. Forinstance, N your target population is families ofdevelopmentally disabled originally, but families

r

with members with other disabilities surface as aresult ci publicity, you may want to considerexpanding your mission to serve a broaderpopulation in respite services.

Publicity can be done through:

press releases

radio/TV/other media announcements

speeches to interested groups

personal contact with families, potential

providers

flyers to be distributed in grocery stores,churches, and other places where families go

notifying family doctors, pediatricians, andother health care professionals and throughother means as well.

Recruit and Approve ProvidersProviders of respite services at Las Cumbres

must be at least 18 years of age, due to liabilityissues and the requirements of some fundingsources in New Mexico. Recruitment ofproviders goes hand in hand with publicity, andas mentioned provider recruitment is probablyone of the most important functions of a 'RespiteCoordinator' (agency, person) and sometimesone of the most difficult. Use of all the media,public speaking, flyers, notification of doctors,clinics and other professionals discussed underthe publicity section. Word of mouth in our ruralarea is one of Las Cumbres' most successfulmethods of recruitment. Families are asked ifthey know of someone who might be in`roestedin being a provider. Often, in this geographicarea, extended family members become officialrespite providers for families, enabling a moreofficial relationship in the family receiving respitethan a 'favor situation. For example, a motheror father with a disabled son or daughter might

eluctent to ask a relative to provide respitethe spur of the moment, or for extended

rariods of time as a favor, but might feel morefree to ask when the relatives get paid.

In our more rural counties, our greatestsuccess in recruitment is through contacts

50

families already have. Providers may also knowother persons who would be interested inproviding respite let them know when you arelooking.

Train Pro/WentRecognizing the importance of training of

providers, Las Cumbres also consideredfactors specific to the regions that we serve indeveloping our Provider Training model. Inthese rural regions, providers are oftenextended family members only wishing toprovide respite for their own relative, and notwishing to receive training to provide respite toother clients. Some providers do not read orwrite and many are Spanish speakingproviders who do not speak or understandEnglish fluently. Our task was how to improvethe quality of respite through training while stillempowering families through supportingexisting cultural and family structures whichwere working in the provision of respite and,without which, respite could not effectivelyexist. Because of strong cultural values andcustoms, many of these families would not userespite if this required going out-side theextended family circle. Many providers woulddrop out of the program if extensive and/orsophisticated training were required.

Las Cumbres therefore developed athree-tier Training Model. Providers are paiddifferential rates based on their level of trainingand/or experience.

Level I providers are family members(grandmothers, siblings, aunts/uncles) who,typically, have known the family for anextended period of time and are aware of thefamily's needs. The pay for Level I providersis $4.00 per hour. The family will typicallywaive our reference checks and the negotiabletraining requirements for these familymembers. The very minimum amount oftraining a related provider can receive is atwo-hour, 1:1 session with the RespiteSupervisor and eight hours of CPR and/or FirstAid. In the session with the RespiteSupervisor the following topics are covered:

Purpose of Respiteincident Reporting

Behavior Management- Abuse and Neglect- Death of a Client

Medications

Annual Meeting and/or Strength and Needs

Forms- Provider/Parent Agreement- Vouchers- Agreement with LCLS

Level II providers meet all Level I

requirements and either complete 40 hours ofprovider training or have a Bachelor's degreein a related field, or have three years'experience working with people who aredevelopmentally disabled, or have e, hours ofdocumented specialized training. The pay forLevel II providers is $4.75 per hour.

The 40-hour LCLS Level II training includesall the topics listed under Level I training andin addition consists of the following topics:

Introduction to Development DisabilitiesBehavior Management/Positive DisciplineRightsHome SafetyNormal/Special DevelopmentConfidentialityParent Panel PresentationBody Mechanics (transfers, positioning)CPR/First AidDisabling Ourselves (an experiential exercise)Rules and FormsDeath and Dying IssuesTeaching Self-Care ISSUE'S

GuardianshipCultural AwarenessInfant Motor DevelopmentLanguage/Speech of infantsNutritionSexualityCommunication SkillsSpecialized Family Training

We have approximately 70 hours of trainingsavailable (listed above). Seventeen hours arerequired and the provider selects topics that

51

Interest htm/her to fulfill the 40 hours required.The format for these topics Includes groupprocess, videos, reading materials and IndMdualwork with the family the provider will beproviding respite for. Las Cumbres sends to allLevel II and III providers notices of In-servicetrainings that might benefit them In their providerrole.

Level III providers meet and maintain all LevelII requirements and provide respite to a/ leasttwo LCLS respite families. The pay for Level IIIproviders is $5.50 per hour.

The Specialized Family Training is given tothe provider directly from the family around theIndividualized needs of the disabled familymember. The purpose of this portion of trainingis to minimize disruption of family/client'sroutines and for the provider to be able to meetany specialized needs the client may have whilerespite is being provided. The family arrangesthe time for this training. Las Cumbres staffreviews with the family during their applicationfor respite services what specialized needs theirdisabled family member may have and what arespite provider will need to know about usualroutines, etc. The family may also request thatthe provider observe their family member inhis/her classroom, day program, therapies, orother setting to get a better feel for the clientand how to work with him/her. This observationtime is counted as part of the two-hour familytraining. A provider who is not related to thefamily must complete Family-Based Training foreach family for whom s(he) provides respite.

The two hours of agency-based training mustalso be received by the provider prior toproviding respite for the first time. This is doneeither one to one or in small groups and led bythe Respite Supervisor.

Only while developing the model, we offeredstipends ($25.00 for a half day or training) toproviders who attended Level ll Training. Manyproviders who attended this Level II Trainingwere family members of respite clients andunwilling to provide respite for clients other thanextended family members. One major incentivefor their attendance seemed to be the stipendswe offered for coming. While these providersare valuable resources, the pool of trainedproviders from which we could draw was not

significantly hemmed as a result of training.From this maims came the decision that toachieve Level NI status, providers must providerespite to more than one family. Extended familymembers or one-family providers may still attendany trainings offered.

In Las Cumbres' Model, all providers werestrongly encouraged to attend their respitedots annual herdisciplinary Team Meeting(ID1) (agency based) or EMIR meeting (N therespite client is in school) or their annual Plan ofCare Meeting (If the ,:lient is Medicaid Waiverfunded). Providers are paid at their usual hourlyrate to attend these meetings. An average ofabout two hours per meeting could beestimated. Respite provider attendance at this(these) meeting(s) facilitates further training of

the provider in dent needs and also Integratesrespite aimless Into other services which theclient might be receiving.

ConclusionThe Information above Is a small sampling of

rural-specific portions of the Las Cumbres 'HowTo Start A Respite Program° manual. The entiremanual Is mailable for $30.00 from: UsCumbres Learning Services, Inc., RespiteProgram, P.O. Sox 1362, Espanola, NM 87632,(505) 753-4123.

The development of this manual was fundedby a grant from the New Mexico DevelopmentalDisabilities Planning Council.

PERSONAL ASSISTANCE FORINDEPENDENT LIVING

John H. Gordon, Agency DirectorHelen King, Assistant to the Director (Presenter)

Resident Services - Foundations of SeniorHealth was established to create acomprehensive, well organized, and flexibleapproach to service deiivery. The program iscomprehensive in that It offers a range ofservices to meet the needs of the consumer; wellorganized, because it is highly coordinated andbased on standardized procedures; flexible inadapting to individual situations and to thediffering levels of needs and abilities of thepopulation. The program has brought all levelsof government together to coordinate resourcesand planning. The private sector alsoparticipates in this process. On the state level,Rhode Island Housing serves as thecoordinating agency, and State departments thatprovide human services have a role ir programplanning, operations, and funding. The programfits into the existing network of health andhuman songless, filling in the service gaps thatthe consumer experiences as a result ofbureaucratic processes.

52

On the governmental level, the result ofintergovernmental cooperation is enhancedefficiency and effectiveness in providing services.

For consumers, the program has created aliving environment which provides services tosuprort their physical and emotional stability,while enhancing their quality of life. Through theprogram and Resident Service Coordinators'efforts, consumers receive on-site services suchas: homemakers/home health aids, healthmaintenance and education, employmenttraining, financial management, nutritionprograms and meals, counseling andconsultation, public assistance, and informationand referral services. Although the services areavailable to the entire population, only 56percent of those eligible have accessed availableservices. However, this 56 percent represents anincrease of 42 percent.

The implementation of on-site Coordinatorsfor management companies has resulted in moreeffective and efficient maintenance and resident

management. Coordinators intervene whensocial services are needed, eliminating anyburden on management personnel who areunequipped to manage social problems.

Traditionally, housing managementconcentrates on the physical plant maintainenceand repair. At first, owners and managementwere reluctant to become involved in socialsupport services. By showing owners andmanagement the benefits, especially cost-effectiveness, we were able to overcome theirresistance.

Also, management was concerned about thelegal liability of providing additional services. Tnovercome this concern, Rhode island Housing,not the management company, contracts withthe providers of the services and requiresprovider agencies to have liability insurance.

Clients are very-low and low income families,elderly, handicapped and disabled personsresiding in Section 8 housing developmentsregulated by Rhode Island Housing. Of the9,627 units in the portfolio, 66 percent of theunits are occupied by a person IMng alone.Ninety percent of the residents fall within thevery-low income category (Income < 50 percentof median). Average eligibility income is $8,945yearly. Seventy-nine percent of the units houseelderly residents. Average age of the elderlyresidents is 74.1 years; average age of residentsrequesting support services is 72 years. Elevenpercent of the residents are minorities, and 14percent of Rhode Island Housing residents arephysically or mentally handicapped/disabled.

The program currently services 56.2 percentof the population. Current research data shows

53

that an additional 20-30 percent of the residentsfall into the 'gap' area the Resident Services -Foundations of Senior Health Program serves.

The Resident Services Program is currentlyimplemented in 72 multi-family and elderlyhousing developments. Twetve of the elderlydevelopments currently receive additionalservices (La, on-site homemaker services) underthe Foundations of Senior Health Program. Totalpopulation of these 72 developments is 9,250resid ei The 24 Resident ServiceCoordinators, hired by the managementcompanint. serve an aggregate 5,200 residents.

Unexpectarily, the Program has hadsignificant impact on the population far beyondthose per.- ons receiving services. In RhodeIsland, nearly 14 percent of the State'spopulation is over the age of 65, compared with11.3 percent nationally. Approximatety 4.75percent of the State's elderly reside in housingwithin Rhode Island Housing's portfolio. Most ofthe elderly have adutt children who, althoughemployed full- or part-time, are expected toprovide care and supervision for their agingparent(s). Sometimes a family member musttake an unpaid leave or quit his/her job to carefor an ill or injured person. The Programprovides for the practical daily supports that cangive family members peace of mind and avoiddisruptions to employment.

For more information contact Rhode islandHousing and Mortgage Finance Corporation, 60Eddy Street, Providence, RI 02903, (401)751-5566.

5.1

MEETING THE CHALLENGE OFINTEGRATED CHILD CARE

Sarah Mulligan, Project Director (Presenter)

The Educational Home Model (EHM)Outreach Project is designed especially for childcare providers In rural areas who are interestedin expanding their programs to include childrenwith developmental, medical, or physicaldisabilities. Funded by the U.S. Department ofEducation (Early Education Programs forChildren With Disabilities), the EHM OutreachProject uses both existing community resourcesand project resources to provide training andtechnical assistance to famity day care homesand child care centers.

One of the project's primary goals is toincrease the number of child care options forfamilies of children with disabilities. Incollaboration with local and state agencies, theEducational Home Model Outreach Project staffhelp to recruit, train, and maintain a network ofintegrated child care programs, including familyday care homes, child care centers, privatepreschools, and Head Start programs. Themodel has been developed in rural and remoteareas and includes specific adaptations foryoung children with multiple and severedisabilities and/or chronic illness.

Training and technical assistance is availableto child care providers and administrators, earlyintervention specialists, families,paraprofessionals (including respite careproviders and teaching assistants), and otherindividuals or agencies interested in integratedchild care. The Educational Home ModelOutreach Project resources are available tothose interested in replicating the model, as wellas those interested in exploring individualcomponents of integrated child care. Writtenmaterials, current annotated resource lists,videotape exchanges, workshops, trainingsessions, on-site demonstrations, and telephoneconsultation via our toll-free number areincorporated into the training model.

There are essentially four phases thatcomprise the training activities of the EHMOutreach Project: identifying the target

54

population, developing a local resource network,providing training and technical support, andconducting follow-up activities. These phasesdescribe, In sequence, the steps project stafftake to make sure that our efforts are trulyresponsive to local community needs and thatthere will be a long-term community impact.

By first identifying the target population in aparticular community, project staff are able tospecificany direct training sessions to the needsof a particular audience. In some geographicareas, this population consists primarily of familyday care providers. In others, families as well asschool district personnel participate. Althoughthe training activities address skills andstrategies specific to integrated child care, caringfor children with disabilities in child care Is acommunity concern and it makes sense toinvolve a variety of players from the start

Within the geographic area, EducationalHome Model Outreach Project staff Identify acore group of child care programs to serve as abase for further training efforts. This core groupincludes child care providers working in familyday care homes and child care centers as wellas administrators. These individuals meet as agroup to learn from each other and to identifythe role families and other professionals mightplay in supporting integrated child care. In itsearliest phase, this network of child careproviders receivas a tremendous amount ofsupport and encouragement from project staff,plus assistance in planning the content forscheduled network meetings. As the networkbecomes more firmly established, tasks such asplanning meetings are accomplished relativelyindependently. It is at this stage that manycomnunity professionals begin to see the impactthat integrated child care has on the SGIVICEOSthey provide and child care professionals beginto see the value of community coordination. Asa strong network of care providers begins toemerge, the promise of integrated child care alsnemerges.

Providing training and technical support, thethird phase, is the heart of the EducationalHome Model Outreach Project. The overridingprinciple of project staff Is simplechild careproviders already have many of the skills theyneed to care for a child with a disability; our jobis to increase the providers' confidence in theirown abilities while increasing their competenceIn working with children who have disabilities.The seven project components include a varietyof awareness and skill-building activities:

Developing irtegratecf chid care Foments foryoung children

Developing an individual program philosophythat addresses the unique characteristics of anintegrated child care program includes learningto balance the needs of children with disabilitieswith other child care responsibilities,communicating program goals to families,

responding to questions and concerns aboutintegration, and assessing staff strengths andneeds.

Meeting the individual needs of children with

Understanding how to incorporate eachchild's learning themes into caregiving routinesis one of the most imriortant elements of thetraining and technical assistEnce provided by theEducational Home Model Outreach Project staff.A series of training packages on this componentinclude these specialized skill areas: managingbehavior, social interaction, handling andpositioning, facilitating small group activities,arranging environments, accessibility, adaptiveequipment, facilitating comi. iunication, Inaddition to providing skill-building activities,

project staff help child care providers learn toask the right questions to get the informationneeded to care for a specific child.

Arranging tha physIzal environmentCarefully planned indoor/outdoor

modifications of the child care program'sphysical environment can help a care providermanage the challenge of adaptive equipmentand promote accessibility for children with motorimpairments.

Mwtagkig health and 'safetyBecause many children with disabilities also

have greater health risks, attention to healer andsafety is critical in integrated child care. Thiscomponent combines best practices formaintaining the `wells child in child care withspecial considerations to address the individualhealth care needs of children who are chronicallyIII and/or medically fragile.

irrirolving parents and faesActive family participation in selecting and

maintak ling a child care placement adds to thesuccess of the child's (and the child careprovider's) experience. This componentaddresses important aspects of familyinvolvement which include selecting a child careprogram; forming partnerships between parentsand care providers; designing intake proceduresto include the family opinions, concerns andgoals; and finding ways to share equipment,information env 1..xpertise.

Encouraging community coordinationServices provided in the child care

environment are vital to young children withdisabilities and their families, and efforts tocoordinate these services are essential tomaking integrated child care work in anycommunity. The project includes training to helpthe child care provider collaborate with otherearly intervention professionals in thecommunity, prepare for transition from child careto preschool or other school settings, andparticipate with other service agencies in

planning for children's individual developmentalneeds.

Managing an integrated child care programA good integrated program is essentially a

well-run child care program with a few importantmodifications. Project staff help child careproviders manage the ongoing demands ofproviding integrated child care which includedeveloping and modifying child care policies andprocedures, maintaining licensing andregistration standards, maintainingconfidentiality, and developing a plan ofcontinued professional development.

r55 0 n

Training in itself only begins to prepare childcare providers to care for children withdisabilities. The fourth and final phase of theEducational Home Model Outreach Projectincludes several distinct follow-up activities thatallow is to continue to support and nurtureintegruted child care programs. At the close oftraining activities in a particular geographic area,we conduct a focus group in which child careproviders reflect on the training and identify whatworked and what didn't, what additionalresources and support are needed, theunexpected challenges they faced, and whatthey learned about children, families, andthemselves. The community networks of otherintegrated child care programs lend continuingsupport as providers face new challenges. Childcare providers are encouraged to continue touse project resources (including a toll-freenumber, newsletter, resource library, and writtentraining materials) as well as local resources thatwill help them continue to increase both their

competence and their confidence in servingchildren with disabilities.

Integrated child care is challenging, but therewards and benefits to the child, the child'sfamily, and the child care provider are trulyworthwhile. The Educational Home ModelOutreach Project la working to expand qualitychild care for children with disabilities by helpingchild care providers prepare for the intriguingchallenge of integrated child care. With trainingand technical support from project staff and localcommunity resources, integrated child care is avaluable option in the array of early interventionservices.

For more information contact the EducationalHome Model Outreach Project, MontanaUniversity Affiliated Rural institute on Disabilities,52 Corbin Hall, The University of Montana,Missoula, MT 59812, (406) 243-5467.

NsWlaW40442.*:s%W i*.sitONfts,ft-

% .04.01WWWRc$

PEER SUPPORTConnie Kramer, Agency Director (Presenter)

Visim Northwest was established to servethose experiencing severe vision loss as adults.The main purpose of the orpalization is to givethese people the tools to help themselves. This isaccomplished through a state-wide network of 34peer support groups and through the informationand referral services offered by a central office.

Our consumers are adults who are experiencingsevere vision impairment for the first time in theirlives. Statistics indicate that in Oregon each yearsome 500 persons are declared legally blind andmore than 1,000 experience vision loss severeenough to threaten their independence. Vision

Northwest serves over haN ci them. Each year, weserve over 500 people through our program.

The program is innovative in both its scope andcontent Only one other state, Massachusetts, hasa peer support group, but it does not encompassthe entire state, as does Vision Northwest Groupslocated in rural areas have equal access to Vision

56

Northwest programs and to information. Having allof the groups based on a peer-suppon structure isa creative departure from the usual model ofprofessional leadership. One person in each groupreceives training through semi-annual woricshopsand is given program information and supportthroughout the year by phone calls and kiemittentvisits from the Program Director and ExecutiveDirector. In addition to an educational program aeach monthly meeting, there is guided discussionabout both the physical and emotional aspects cicoping with vision loss. This exchange of ideasgives invaluable ongoing support to thoseexperiencing this crisis. A final unique aspect ofthe program is that groups may dissolve afterseveral months when the needs ci members havebeen ma

One of the main obstacles that had to beovercome was physically reaching the targetpopulation of those new to visual impairment.

5 7

Once they had been reached, the nod obstaclewas, and is, to get persons in crisis to attendsupport group meeting& As the recognition dVision Northwest has grom, these obstacles havedkninished. However, recruitment efforts weconsistently maintained The other major obstaclewas to garner a source of funding in order to setup and maintain a central office, staff, and to giveongoing support to the group& This wasaccomplished by obtaining a major grant from theMeyer Memorial Trust Sources of funding includefund-raisers, donations, grants, and corporation&We receive no federal, state, or United Wayfunding, and our services are free.

The Vision Northwest program ci peer supportgroups has accomplished several major goals.Since its founding in 1983, hundreds of peoplehave participated in the support groups. As themembers of the current 34 groups come togetherto deal with their newly-acquired vision loss, theyacquire hope, as well as a sense of independenceand power in the face of what can be anoverwhelming and terrifying situation. This isaccomplished at eash monthly meeting throughpractical applications, such as a demonstration ofcane travel by a mobility instructor. An equally

57

Important part d this spectrum we the discussionson topics such as the grief experienced by thosenew to vision loss and the accompanying moodswings wkh which they and their associates mustdeal. On a cumulative basis, the program givesindNicluals a foundation for success as they onceagain become fully-functioning persons who heessentially normal lives.

Unexpected results have included thesurprisingly great demand in areas outside ci ourpopulation centers In the state of Oregon and thegratifykigly large group of volunteers who havebecome a vital part of Vision Northwest.

Although variations odst within each group, theprogram has been successfully replicatedthroughout the state. Attention to group leaders'training and frequent contact and support from thecentral office help maintain this standardization.We have had inquiries from several cther stateswho are interested in duplicating the VisionNorthwest program.

For more information contact Vision Northwest4370 NE Halsey, Portland, OR 97213, (503) 284-7560.

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Support Systems

THE COMMON THREADS

Diversity breeds success.

Take care in portraying the need for help; don't exploit consumers by making themappear to be pitiful or helpless.

Consumers are good networking resources. Establish support networks amongpeople who share the same type of disability.

Be responsive to a consumer's needs and wishes. Don't provide more services thanare needed or wanted. Don't provide a high-tech, complicated solution if a low-tech,simple solution is preferred. Listen actively to the consumer. Be sensitive to attitudes,vocabulary, language, and level of comprehension. Allow enough time to find out whata consumer really needs and wants. Identify what "independence" means to eachconsumer. Train consumers in asking questions (ex.: train elderly people to askquestions of their doctors). Assure them that asking questions is appropriate andnecessary. Ongoing peer training is important, but identify needs first. Focus onconsumers' needs--this leads to innovative approaches and helps eliminate "turf issues.

Identify ways the service provision program can provide support services to othertypes of programs; don't always be on the receiving end.

Access generic support services, such as homemaker services, by forming andmaintaining a resource council with monthly information-sharing sessions.

Volunteers are crucial in times of tight funding: expand the capability of naturally-occurring, existing networks to provide support services; enhance their existing skills.Consumers, consumer advocates, and peer support groups can contribute supportservices. Establish a volunteer action center and put out a monthly newsletter listingvolunteer needs. Don't reject a source of support services just because it may meanrules must be bent or even broken. Take advantage of all government services (local,state, federal, and tribal). Recruit civic groups, such as Sertoma, the Lions Club, the ElksClub, etc., to provide support services. Representatives of industry and business canserve on advisory councils of vocational programs snd can provide, or sponsor, othersupport services. Public schools and libraries, county extension services, students,

585 t;

senior citizens' groups, and youth groups, such as Future Farmers of America, 4H, andCampfire, Inc., are also good resources. Look for unique, nontraditional special interestgroups, such as the American Bikers Aiming Towards Education Motorcycle Club ordance clubs. Churches usually share the values of the community and can be powerfulresources; they may be able to provide transportation and conduct health promotionactivities. Look for unique resources in predominantly ethnic areas; Native Americantribal associations are valuable resources in reservation areas.

Don't come in as the "expert"; look for each volunteer's area of expertise. Provideadequate feedback for volunteer support service providers. Recognize volunteers (suchas employers of transition program trainees) for their contributions. Provide recreationalactivities for volunteers; make volunteering a pleasurable, revarding experience.

Investigate the availability of National Community Service Act funds. This federalprogram will provide $250 million in grant money over a three-year-period for developingexemplary volunteer programs.

Advertise and promote service provision programs through public awareness activitiesand media coverage. Politicians monitor the media. Use the media frequently andeffectively; cultivate media acquaintanceships. Use "socially-responsible change" as atheme to recruit volunteers.

Town cafes can serve as centers for sharing information on needs, recruitingvolunteers, and getting referrals. Make stopping for coffee and conversation a priority.

Sponsor and attend family-focused activities. Participate in or attend family-focusedrituals and ceremonies (weddings, graduations, funerals, anniversary parties, etc.).Attend and participate in community-wide cuttural and traditional events; use them asopportunities to raise funds and recruit volunteers. Become visible in the fabric of therural community.

Families need support services as much as individuals do. Family involvement insupport services is crucial.

Don't forget service provider staff have support needs, too.

Train professionals to be sensitive when intek viewing consumers. Educate professionalsin the community about the immediate need for establishing support services for peopletransitioning back to the rural community from inpatient rehabilitation programs. Educatethe medical community and develop cooperative ways to use their resources.

Mental health services and support groups for people with developmental disabilitiesmust be a priority. Crisis networks are a necessary support system.

View the Americans with Disabilities Act as an opportunity for networking and forservice providers to consult with businesses and municipal governments.

Encourage international cooperation in areas bordering Canada and Mexico.

59 6

Take advantage of current technology; use video and telephone conferencing; networkwith computers.

Small Group Facilitators: Mike Jakupcak, Sue Toth, Phillip Wittekiend, Shawn CIOUSes

Ueve Dalin (Rural Institute on Disabilities), Mike Mayer (Summit Indeperxient LivingCenter, Missoula).

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ACCESSIBILITY *,;ss \IK,Ak;s. ..... ............................. ...

USING INTERACTIVE TELEVISION TOPROVIDE AND EXPAND RURAL SERVICES

John Pinter, President (Presenter)

In 1989, the Easter Seal Society of Utah(ECSU) received a grant from The Robert WoodJohnson Foundation to develop the Rural EarlyIntervention Program pen The purpose of theprogram was to provide early interventionservices via interactive television in four remote,rural sites where services were difficult to deliver.

The basis for the service was the UtahEducation Network's (UEN) EDNET televisionsystem. This television system connects outlyingservice sites, generally community colleges, areavocational centers or high schools, by microwavetransmission with the lead site at the Universityof Utah, Salt Lake City. Microwave televisiontransmission, which directs signals between 'lineof site' towers, allows simultaneous incomingand outgoing communication between anunlimited number of sites on the system. Forexample, as a speaker leading the group isspeaking in one site, individuals participating atanother site can interrupt with a question; at thesame time, all sites can receive visualtransmission from that site.

The UEN is primarily a delivery mechanismfor classes or other educational activities. It hasalso been used in the past for conductingmeetings, but its use as a regular direct servicemethod has been relatively untested.

The basic objectives of REIP were:

1. To provide early intervention services,including physical, occupational, and speechtherapy, and parent education, to 40 familieswith disabled children, aged birth to three, inrural Utah;

2. To provide trained home visitors to meet withfamilies and provide program and therapycontinuity; and,

3. To demonstrate the program and cost-effectiveness of EDNET to provide service inhard to serve areas.

These objectives were developed to addressthe critical shortage of therapy professionals inUtah, particularly in the rural areas of the state.The Stale Health Department provides a rotatingassessment team of professionals from the threetherapy disciplines three to four times per yearand early intervention services in several parts ofthe state, but services are still in great demand.

ESSU selected service sites with theassistance of the State Health Depratment,based on known clients and shortage ofservices. In order to keep the number of peopleat any one site manageable, it was determinedthat four sites with a capacity of ten familieswould be chosen.

The four original communities selected wereRoosevelt, Cedar City, Ephraim, and Richfield,Utah. These four towns represent ageographical range throughout the state, andgenerally are small r!tas of 5,000 to 12,000residents in both town and surrounding area.After the first nine months, the site in Ephraimwas dropped and service offered to SaintGeorge, Utah.

Project management was provided throughthe supervision of the agency's director and anapproximately 20% FTE contract director. Thisdirector was a speech pathologist (SLP-CCC)working as an individual contractor. Shesupervised therapy staff and home visitors, andplanned the sessions and special presentations.Additional support came from another ESSU staffmember, who provided continued supervision tohome visitors between sessions, and familycontact as necessary.

Easter Seals does not have therapists onstaff, and contracted with an occupationaltherapist and physical therapist from PrimaryChildren's Medical Center in Salt Lake City. Thespeech pathologist was in private practice in SaltLake City. The therapist staff received trainingfrom the EDNET staff in how to best use thesystM.

Paraprofessional home visitors were recruited

from the communities which they served. Theseindividuals included: the fanner director of acollege based early intervention center; themother of a disabled child; a special educationteacher's aide; and a displaced homemaker.These hdividuals became part4ime staffmembers of ESSU, paid generally between $5.00and $6.50 per hour. Home visitors participatedin a two-day training program with the programdirector and ESSU staff. Training included anoverview of disabilities, orientation to the EDNETsystem and on-air practice, and training by thetherapists.

Client recruitment was a shared responsibilityof the Health Departmsnt, local public healthnurses, and the home visitors. Because of clientconfidentiality concerns, families that the nursefett would be appropriately served were given abrochure the/ provided a program referral.When the parent returned the brochure, ESSUstaff would contact the family and determineeligibility. No fees were charged for the service.

Clients referred to the program were betweennewborn through age three. Most joined prior toturning three, but those whose third birthdayoccurred while enrolled were able to stay in theservice. Disabling conditions included mentalretardation, cerebral palsy, and others.

It was the intention of the program to havethe therapist or program director conductstatewide individual client assessments. Clientintake took much longer than anticipated,however, so assessments were obtained fromthe nurses or other sources. These provided forindividual information about clients for thebroadcasts.

Broadcast sessions were generally held everytwo weeks, for 11At - 2 hours. A typical sessionwas:

9:00 - 9:15 Welcome & orientation to session9:15 - 9:45 Speech Pathologist9:45 - 10:00 Occupational Therapy10:00 - 10:05 Break10:05 - 10:20 Finish OT10:20 - 10:50 Physical Therapy10:50 - 11:00 Wrap-up

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Special sessions included °Adaptive Toys,* bya rehabilitation engineer; °Nutrition° by the HealthDepartment; °Parent's Rights: IndividualEducation Plans° by the state's parent to parentprogram; and a session on parent's needs byKids on the Move Center, Provo.

During the session, the therapistsdemonstrated a technique with a child at the SaltLake City site, and encouraged the parents tosimulate the technique with their children, as

aPProPriataBetween the twice monthly sessions, the

home visitors traveled among families to assistthem in carrying out therapy goals and helpthem to find additional services. Families alsoreceived ongoing support and additional training.The therapists made two family visits per famlirduring the program.

The program's grant period did not allow forsufficient public education time to better clientidentification. Public health officials weren'tadequately informed on the program and itsbenefits. This was a major problem.

In addition, the State did not receive fundingfor expansion of early intervention services;service continuation would have requiredcompotition with early intervention centerfunding. Politically, this was an impossibility.

During the demonstration period, a total of 36families were served in five sites. The total costper session amounted to an average of $900 fortwo hours, including all staff costs, salaries andprofessional f9es. This amounted to a cost of$23.50 per hour when fully staffed.

Parent evaluations reported a high level ofsatisfaction with the service; many indicated thatREIP was the only service their child wasreceMng. Despite the distance betweentherapist and family, most were pleased with theprogram and the attention they received from thehome visitor.

For more information contact the Easter SealSociety of Utah, Inc., 331 South Rio Grande St.,Suite 206, Salt Lake City, LIT 84101, (801) 531-0522, (801) 531-0575 FAX, (801) 531-9372 TDD.

SAV

6

ACCESSIBLE TRANSPORTATIONLinda Tonsing-Gonzales, Agency Director

Sharon Swanson, Rural Specialist (Presenter)

Raton is a small community in northernNew Mexico with a population of approximately8,000 people. New Vistas Independent LivingCenter which works with all disability groups, hasprovided outreach services to Raton since 1981.In 1987, the NVILC was awarded a grant fromthe State Division of Vocational Rehabilitation toestablish an office in Raton and provide ruralemployment-related services. As the programprogressed, it became clear that accessibletransportation to and 'corn jobs developedthrough the Rural Employment Services Programwas a major need. Working with consumers onan individual basis did resutt in one quadriplegicacquiring a lift-equipped van from DVR, butcommunity-wide advocacy was needed toaddress the issue of transportation. A lift-equipped van that could be used by the entirecommunity was needed, not just fortransportation to jobs, but for any travel withinthe area.

While it is not unusual for a non-profit organi-zation to apply for UMTA (Urban MassTransportation Association) funds to purchasevehicles, New Vistas Independent Uving Centerneeded to ensure that should its Raton/DVRfunding end, a van would still be available to thecommunity, even if an NVILC office wasn't.

Other ILCs with home offices located far fromtheir rural catchments might consider NVILC'ssolution to the community-based van dilemma.The NV1LC Raton office staff person canvassedthe community for a local agency or group thatwould join in a partnership to appty for UMTAfunds. The search identified the First MethodistChurch, whose congregation needed a van totransport parishioners to Sunday services.

Using the NVILC grant-writing expertise and theChurch's commitment to provide drivers andinsurance, a grant was written for a 15-passenger lift-equipped van in April, 1989.

NVILC also coordinated the fundraising for thelocal °match` funds needed (approximatety$5,000) after the grant was awarded. Thisincluded a small proposal to the US WEST

Foundation. The community was very supportive.The van arrtved in the summer of 1990. It

has since been available to the community'sdisabled and elderly citizens for shopping,medical appointments, field trips, employment,social and recreational activities, or just for visitsto friends or family members. On Sundays thevan is used by the Church. While there may beno direct correlation with the purchase of thevan, Rural Employment Services has placedapproximately 40 people in jobs in an otherwiseeconomicalty-depressed mining area of theState. With the increased ability of disabledpeople to work, and to move around thecommunity in the van, their visibility hasincreased significantty. Their value as active,viable assets to the community is obvious. Withapproximatety 1100 people with disabilities IMngin Raton, it is conceivable that all of them mayuse the van at some point in their lives. Thecommunity's awareness of people withdisabilities has grown accordingly.

This program has not been replicated, but aswas anticipated, DVR funding ended, thoughCenter money still funds the Raton office on a20-hour week basis. The van is in place. Thepercentage of the potential clientele who use thevan service is difficult to calculate. Since theservice merely increased a community resource,the riders may or may not be NVILC clients.

Now that the program is established, theannual budget for operation is the responsibilityof the group or organization that holds title to thevan in this case, First Methodist Church.

Daily operating costs have forced the Churchto impose a rider's fee on the van service. Whilesuch a fee is not unusual, NVILC staff areseeking ways to access city/county resources foroffsetting operating costs to make the rider's feereasonable and affordable to all. A subsidy orreduced-fare coupon program is beinginvestigated.

The van has become quite popular in thecommunity and provides service to other groups1.,ch as Special Olympics participants, Boy and

67

H ;5

Girl Scouts, 4-H Club, ministry to thehomebound, and nursing home resident& Thisbroad-based usage of the van demonstratoshow communities can come together for acommon cause that benefits all and fostersintegration, rather than a having segregated'special' van for disabled folks.

UMTA reviewers were so impressed with theproject justification, they would have funded ttyg

vans if the community could have financiallysupported both! Unfortunately, we had to refusethe offer.

For more Information contact New VistasIndependent Living Center, 2025 South Pacheco,Sufte 105-A, Santa Fe, NM 8/505, (505) 471-1001.

ACCESSIBILITY OF COMMERCIALAND PUBLIC BUILDINGS

Timothy Larson, Agency DirectorBobbie Bouvier, Program Supervisor/Counselor (Presenter)

In the spring of 1989, the Center forIndependent Living of Northeastern Minnesota(CILNM) began a successful accessibility projectto heighten community awareness, responsive-ness and ongoing commitment to the removal ofphysical barriers.

Our project, a community access survey andguide, is clearly not original. However, allaspects of the project, including planning,process and r&sults, represent a distinctdeparture from standard access guide production.Our objective was to use the end product as themeans to attain the broader goals of publiceducation and a shift in attitudes concerningaccessibility requirements.

The most significant aspect d Access Hibbingis the decision to avoid labeling any facility'accessible' or "inaccessible'. The guidebookcontains only factual information, painting asthorough and accurate a word picture of site/facilityconditions as possible. Since economicdevelopment is a key issue in our region, we usedthis feature to market the project This approachresults in an array of ongoing, exciting,community-based accessibility initiatives.

In terms of community awareness andreceptivity, the assurance of a *positive'presentation and post-survey feedback/technicalassistance made virtually all businesses in thecommunity not merely willing, but eager, to

68

participate. We are aware of only one refusal topermit surveying out of nearly 200 sitescontacted! Volunteers were well trained, notonly in the technical aspects of access surveys,but in critical community relations and educationcomponents. Business owners were givenpractical suggestions for improvements, statisticson numbers of those directly affected byimproved access, referrals for additionaltechnical assistance and information on availabletax credits. The Chamber of Commerce, serviceorganizations, city government, the city buildingofficial and community newspapers were' recruited' early in the process, gMng community' ownership' to the entire project.

From the consumer standpoint, theguidebook format fosters increasedindependence, since guidebook users evaluatethe available options for themselves, based oncomplete and accurate information. Thus, thedecision concerning the accessibility of anestablishment belongs to the individual, ratherthan the surveyors.

In February of 1990, as a direct result ofAccess Hibbing, the Hibbing City Councilpassed a resolution making a commitment tobecome a barrier free community. To that end,a community Access Advisory Council wasformally recognized by the city the followingmonth. The majority membership on the Access

Council Is penkpna with disabilities. This grouphas cosponsored an ADA Information Workshopand a local Access Achievement Awardscelebration, recognizing °usable° localbusinesses and services. They arespearheading a variety of community accessimprovements, including major renovations to thecity arena/recreational facility, prioritization cisidewalks for curb ramps and the construction ofa ramp between the regional hospital andadjacent shopping mall. Council members arealso working with the public library to catalogueaccess resource materials, which will then bemade available to the public through the librarysystem.

One of the most unexpected results of theproject has been the discovery that the citybuilding official is a tremendous access advocateand resource. He has assumed a leadershiprole in Access Hibbing projects, initiating anupcoming accessibility workshop for plumbersand carpenters. This program componentshould have a significant impact in rural areas,where unlike urban settings design for mostrenovation projects, and often for newconstruction, is undertaken by generalcontractors/tradespeople. Enhancing the accesseducation of design professionals appears tohave minimal impact on accessibility in ruralAmerica

We are currently involved in assisting threecommunities in northeastern Minnesota toreplicate this program. In each of these townsvolunteer °steering committees° are adapting ourmodel to meet their individual community needsand priorities. In conjunction with the MuttipleSclerosis Society, we are developing a statewideprogram called Community Access Partnershipswhich will provide standardized trainingmaterials, survey tools and resources to ruralcommunities. A community access coordinatorwill be based in each CIL to facilitate projectobjectives. Our presentation of this project atthe Region V Independent Living Conference(October 1990) has resulted in additionalinquiries from as far away as California andNevada

CILNM serves persons with all disabilities, asdoes the Access Hibbing project. A recent Wall

69

Street Journal article cites 43% of the populalionas DIRECT beneficiaries of access improrementaBased on the recant census, 8800 individualsare potential recipients of project benefits withinHibbing city limits. Approximately 1800 copies ofthe guidebook have been distributed to datethrough area service providers, Chamber ofCommerce, tourist attractions, county informationand referral agencies, libraries, health careproviders, etc. However, we believe that theproject impact hes been, and will continue to be,much broader. For example, the project recentlyworked with an area grantor to incorporateaccessibility requirements into their fundingguidelines. This agency provkles grant moniesfor physical plant improvements in more than200 rural communities. (Total population of thisarea is approximately 150,000, spread over13," /0 square miles.)

The project did encounter obstacles alongthe way. Since our approach to access surveysand guidebook production was unique, weencountered the practical difficulties ofdeveloping appropriate training methods andmaterials, survey tools, °marketing° strategiesand informational pieces. In short, we lacked theforms to fit the intended functions.

However, our most difficult obstacle was theproject goal itself. A frequently heard axiomconcerning accessibility is that attitudinal barriersare the most difficult to overcome. The AccessHibbing project was designed and carried out toaddress this issue. Under the °guise° ofproducing an access guidebook, our project isworking toward shifting attitudes concerningaccessibility requirements, from something °they°are making us do °FOR THEM°, to somethingwhich IS of tangible benefit to the wholecommunity. We are convinced, for reasonswhich we have outlined here, that we have madegreat progress to overcoming this obstacle,which IS our ultimate goal.

For more information contact the Center forindependent Living of NE Minnesota, 2310 FirstAvenue, Hibbing, MN 55746, (218) 262-6675 or(218) 254-5757.

AFFORDABLE AND ACCESSIBLE HOUSINGDuane Frencht Agency Director

Bill Crandall, HAMMER Project Coordinator (Presenter)

The HAMMER Project provides axessibilitymodification3 to private homes at an affordable

Price.Its most innovative aspect is the partnership

between the local carpenters' unions and AccessAlaska Prior to HAMMER, persons in Fairbankswho needed modifications to make their homesmore accessible were forced to figure k out forthemselves. Many were unable to bear theexpense of costly home modification, and in theworst case scenario, would just not leave theirhomes. People living In Institutions or with theirfamilies were not able to find ascessible housing tomove into. Access Alaska began hearing fromthese families and initially asked for public fundingto pay for the materials and labor to meet theirneeds. Funding sources endorsed the proposalsbut claimed the number of people who wouldbenefit werr too small to justify the moneyrequested. Rather than give up, Access Alaskamet with the local carpenters' union manager todiscuss the need for accessibility modifications forpeople v to were 'trapped' in their homes. Themaraga eit that the local carpenters would bewilling to donate their expertise. To motivate them,he offered to move their names up on the callladder for paying jobs if they would help out in thiscommunity project. Access Alaska thenapproached the local chapter of Easter Seal andreceived a small grant of $2,000 to help purchasebuilding materials to modify homes. In addition tothis grant, Access Alaska asked for discounts fromthe local building suppliers to help stretch the smallamount of money we had received. From thismerger of the not-for-profit sector and the locallabor pod, Access Alaska began the program ofremodeling existing homes.

Since 1985 HAMMER has not recetved fundingin excess of $2,S00 from any one source. Peoplewho request services from this program have beenasked to contribute to the fund if possible, andsmall donations from large corporations aresolicited annually to be used for purchase of

70

materials. This BrevoMing fund' method has kerthe project operating as Access Alaska confirmsto seek a more permanent source of revenue.

me greatest obstacle to Increasing the numberof people served by the HAMMER project is theavailability of union carpenters, Alaska has a shortbuilding season due to weather, and since theproject utilizes volunteer labor, people who needoutdoor modifications must wait until the workdemand on union carpenters is not as great.Unfortunatety, that is the time of year (summer) thatAccess Alaska receives the greatest number ofrequests. Access Alaska also recognizes thatadvertising this project would only serve toincrease the waiting list. There are only so manycarpenters willing or able to °donate* their time.

Since 1985 when the HAMMER project wasconceived, Access Alaska and the local carpentershave provided accessibility modifications to over 60private homes. The individual projects Include:building entrance ramps, widening doorwals,adding grab bars,providing adaptive hardware (sinks, door handles),and providing remodeled kitchen areas for

wheelchair users.One unexpected result of the HAMMER project

has been that the staff person coordinating theprojects has become the community 'expert° onaccessibility and is now called upon to providetechnical assistance to prkfate ancl public business.

The HAMMER project has providedmodifications to many age groups and to peoplewith different o'qabilities. Tho most commondisability has bn a mobility restriction requiringadaptation of the physical environment Theproject is currentty able to meet approximatety 60to 70 percent of the 20 to 25 requests it receivesannually for some type of modification.

For more information contact Access Alaska,3550 Airport Way, Suite 3, Fairbanks, AK 99709,(907) 479-7940.

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"Accessibility" has different definitions across age groups. Accessibility is a communityissue. Everyone has general accessibility needs; some people have specific needs.Accessibility can have physical, attitudinal, environmental, and cultural definitions.Environmental inaccessibility due to pesticides and other toxins is a growing problem (ex.mobile home components may contain formaldehyde). Transportation is limited ordifficult for non-drivers, especially those with mohility or vision impairments. Sensoryaccess is important for those with hearing or visual disabilities; hearing dogs, seeing-eyedogs, wind chimes on farm outbuildings, telecommunication devices for the deaf (TDD's),flashing alerts, cellular phones, and wave sensory systeils are solutions. Language canlimit access; some rural areas, especially in the U.S. Southwest and those nearreservations, have populations speaking two or more languages. Bilingual signs may bea small way tO increase access to businesses and public services. Different programareas mean different access problems. Take a total environment approach.

Information access is also riportant; use toll-free pnone numbers, telecommunicationdevices for the deaf (MD's), computer networks, public libraries, "Ask a Nurse" lines,state developmental disabilities advisory councils, and state legislature information offices.Use "road shows" to take program information out into service areas. Computers canmake speech "visible" and can be activated in a number of ways without typing; they canfacilitate communication between people with disabilities. The Pacific NorthwestAugmented Communication Group and similar organizations are resources forcommunication solutions. Many states now have telephone relay systems which connecttelephone callers with hearing impairment with hearing callers: the caller dials an 800number; the call is relayed to a TDD or from a TDD to a telephone. The service will beavailable nationally in two years.

Demonstrate creative accessibility solutions, like Alaska's "HAMMER project". U3ecommonsense solutions and share them. Encourage judges to sentence minor offendersto community service making accessibility modifications. Explore using work-for-creditapproaches, such as Food Share uses. Use Vista volunteers, the National Corps ofRetired Executives, and other groups to make modifications, advise on financing, andacquire materials. In remote areas, where even roads may be nonexistent, accessibilitysolutions have to be personal and individualized.

Use the expertise of university rehabilitation engineering units Architectural schools,vo-techs, and high school shop classes can be centers of education and technicalassistance for making accessibility modifications.

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"Comprehensive Housing Affordability Strategies" groups are forming to fundaccessible housing in innovative ways. Look for creative ways to fund housing,modifications, and transportation. There are private funds with no strings attached, statetransportation funds, community block grants, United Cerebral Palsy Association loans,vocational rehabilitation monies, Farm Home Administration loans, etc. Look for uniquetransportation solutions; use county resources or fund vehicie-owners to providetranspor

Take a proactive, positive approach to the Americans with Disabilities Act requirements;enlist the cooperation of key decision-makers in the community. Emphasize thatcompliance has positive economic resultspeople patronize accessible businesses.Reward and promote businesses that take the initiative to become barrier-free. Avoidbecoming the "accessibility police". Be flexible when asking for reasonable accessibilityaccomodations. Build on the ADA requirements. Regional Disability BusinessAccomodation Centers will help businesses with accessibility problems, but most centersare in urban areas and oriented toward employers with 15-25 or more employees. Mostrural employers have fewer employees; accessibility is the major rural issue. Each areawill have an advisory committee; rural areas should strive for representation, so ruralaccessibility will have equal importance with jobs.

"Program accessibility" is necessary--once the consumer gets in the door, is theprogram really worthwhile and appropriate? Programs must be tailored to the individual'sneeds and wants, rather than taking a "cookie cutter" approach.

People with disabilities frequently lower their expectations and adapt toinconveniences; help them recognize problems and explore possible solutions. Aconsumer's experiences can be valuable awareness lessons for the public. Askconsumers for ideas on establishing access.

Educate policymakers, teachers at all educational levels, and the general public aboutaccessibility needs. Survey community housing and transportation needs and use thefigures to educate the public. Let people experience accessibility problems firsthand.Present a consistent message and be prepared to regroup when attitudes don't change.Pursue political change locally, statewide, and nationally. Use the local media to bestadvantage.

Pursue curriculum changes in architecUral and engineering programs. Educatearchitecture students on architectural barriers.

Mobile homes fill a rural housing need, but need modifications and adaptedconstruction techniques to be accessible. Develop a "road show" for mobile homeoccupants; educate them on barriers and possible modifications.

Small Group Facilitators: Mike Jakupcak, Shawn Clouse, Kathy Miller-Green, TomSeekins (Rural Institute on Disabilities), Jude Monson (Summit Independent Living Center,Missoula).

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INNOVATIVE RURALINTERPRETATIONSOF DISABILITY LAWSAND PRACTICES

72

SPECIALIZED FAMILY CARE PROGRAMKaaren C. Ford, Medley Specialized Care &

Community Placement Program Manager (Presenter)

As a result of a 1981 class action lawsuit,Medley vs Ginsberg, the West Virginia StateDepartments of Health, Education and HumanServices gained approval to workcooperatively to develop a statewide system ofcommunity-based services so young peopleliving in state institutions could move intocommunity settings. The Specialized FamilyCare Program was developed as part of thesecommunity based services. It is a compre-hensive statewide placement and gamilysupport program serving individuals withdevelopmental disabilities who have been, orwho are at-risk of being, institutionalized.

The purpose of Specie lind Family Care isto provide individuals with a home-likeatmosphere where they can grow and developto their maximum physical, mental, emotionaland social potential. The program is basedon the belief that all children and most adults,regardless of their disabiiiiy, belong withfamilies and need enduring relationships withadults. Specialized Family Care for the mostpart is a permanent placement. In somecases it is a short term living and trainingsetting, a step toward moving back with thenatural family or on to more independentliving.

Individuals in placement are integrated intothe communities in which they live as part ofwell functioning families active in theircommunities. These folks attend church, ballgames, movies and school dances. They seelocal doctors and dentists, and purchasegoods from local merchants. SpecializedFamily Care has helped change the servicedelivery system in our state. After ten years ofcommunity integration, our state has passedits first Family SuppoA legislation so naturalfamilies can receive the community servicesneeded to maintain their family members.

Specialized Family Care was initiallydeveloped to provide for the needs of MedleyClass Members. It has, however, evolved towhere it now serves non-Medley adults, as

well as children at risk of institutionalization.Currently, there are a total of 228 individualsliving in Specialized Family Care Homesthroughout West Virginia. Specialized FamilyCare also provides respite services to naturalfamilies receiving Title XIX Waiver funding. Arecent placement needs survey inclicates that370 individuals need placement and/or respiteservices,

Medley Class Members and Title XIXWaiver-funded individuals are targeted forplacement through an interdisciplinary teamprocess. In West Virginia the responsibility forplacement and service delivery for individualswith mental retardation rests with the localinterdisc:plinary team. Core members includethe case manager from a local behavioralhealth center, an advocate from a statewideagency and the Family Based Care Specialistcontracted by the Office of Social Services,Department of Health and Human Resources.

When an individual is targeted forplacement, the Family Based Care Specialistassesses his/her needs and decides ifSpecialized Family Care is appropriate. If so,the Family Based Care Specialist matches theindividual with a provider.

The matching prnces.i iovolves assessingboth the targeted individual's needs and theskills of the Specialized Family Care provider.Specialized Family Care providers are recruitedto provide permanent homes for individuals withdevelopmental disabilities. They get to know thetargeted individual prior to placement; in manycases they are recruited to meet the needs ofone particular individual.

Trial visits and indMdual-specific training areinitiated once the match has been made first atthe individual's residence, then in theSpecialized Family Care provider's home. Thisgives the individual an opportunity to becomefamiliar with the family, home and the communityin which he is going to live. Trial visits andindividual-specific training can take severalweeks to complete. Placement follows.

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Members of the IndMdual's interdisciplinaryteam work together to ensure a stableplacement. The case manager coordinatesmedical, education, habilitation, and speechserveCee. The advocate monitors the adequacyd these seMces and addresses systems Issues.The Family Based Care Specialist monitors theSpecialized Family Care Home to ensure that itmeets certification standard% coordinates orprovides on-going training, provides support tothe family, and acts, when necessary, as thefamily's advocate. This local interdisciplinaryteam develops the individual's service plan. Theservice plan or Individual Program Plan, is

updated and reviewed every Pix months to reflectthe indMdual's changing needs.

In West Virginia, the local communitybehavioral health centers contract with the Officeof Behavioral Health, Department of Health andHuman Resources to provide case managementservices to individuals with developmentaldisabilities. The Office of Social Services,Department of Health and Human Resources, isthe state-mandated home finding agency. TheOffice of Social Services has home findingcontracts with three agencies to certify familiesas Specialized Family Care providers. Advocacyservices are provided by an independentstatewide advocacy ageincy. Staff of the MedleyManagement Team coordinate these threesarvices. The Medley Management Team iscomposed of the directors of various programsfrom the State Department of Health and HumanResources, State Department of Education, andState Department of Vocational Rehabilitation.This team is under court mandate to overseeservices to Medley Class Members. TheProgram Manager of Specialized Family Care ishoused in the Office of Social Services and is aresource on services to indMduals withdevelopmental disabilities. This ProgramManager is an employee of the UniversityAffiliated Center for DevelopmentalDisabilities/West Virginia University, and serveson various UAC program committees. TheProgram Coordinator reports to both the Directorof the UACDD and to the Director of the Office ofSocial Services.

Thirteen standards must be met before afamily can be certified as a Specialized Famity

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Care Home. The family's home must be safeand accessible. The family receives twelvehours ot pre-seMce training and undergoes anextensive home study. The pre-seMceCLUTICUIUM includes: background and oveMew ofthe Program; role of the Specialized Family Careparent; role of the respite provider; standards forapproval d homes/performance contract; thedefinition of developmental disabilities; the ODbill of rights; the Education for All HandicappedChildren Act; behavior management; developingseN-respect; medication and monitoring; seizuredisorders; nutrition for individuals withdevelopmental disabilities, first aid; home firesafety; the normalization principle; and humansexuality. The family also receives Orientation toMedicaid Personal Care training and CPR andFirst Aid training. Certified families can becertified as Medicaid Personal Care providersand receive their own Medicaid Personal Careprovider numbers.

Each certified family receives 32 yours ofongoing training each year. This includesindividual-specific training, provider electivetraining and CPR certification, with First Aidcertification every three years. All training exceptCPR and First Aid is documented by lessonplans with specific written behavioral learningobjectives, training methods and evaluationmethods. These lesson plans are reviewed by aQualified Mental Retardation Professional andsigned by the family. This training is donethrough one-on-one sessions, small groups, orworkshops and uses handouts, hands-ontraining and multi-media materials.

The demand for, and interest in being, aSpecialized Family Care Home varies from areato area of the state. Large statewide recruitmentcampaigns are not successful. Personal intereststories in local newspapers draw a great deal ofinterest, but word of mouth is the mostsuccessful recruitment method. Individuals whoknow, or who have seen, Specialized FamilyCare families are those most genuinelyinterested in committing themselves to theprogram. Most of our families live in smallz.ommunities in which caring for others iscommon.

The Specialized Family Care Programconsists of a statewide network of Family Based

Care Specialists who recruit, screen, train andcertify families as Specialized Family Careproviders. The statewide network of FamilyBased Care Specialists is directed by a ProgramManager. The Program Manager holds monthlymeetings with all the Famity Based CareSpecialists at which they receive group training.Of the 19 Family Based Care Specialists, 13 arehoused in local area Division of Human Services,Department of Health and Human Services,offices. These Family Based Care Specialistsare developmental disabilities resource persons.

The F=14 Based Care Specialist monitorsthe home monthly, then quarterly assesseswhether the indMdual's needs are being metand submits annual recertification narratives forreview and approval. The Program Managerreviews Specialized Family Care records andconducts on-site visits.

Specialized Family Care is an exemplaryprogram in that:

it is individual-focused and family-centered

it provides permanent placementit is the epitome of communtty integrationit is the best example of inter-agency col-laboration in our service delivery systemall placements receive respite servicesthere is an interdisciplinary team approach toservicesall providers meet Medicaid Personal Careprovider certificalon standardson-going training is formalized with lessonplans and posttestsseven children in placement have beenadopted since 1989there are 228 individuals (adults and children)in care with 218 certified families

For more information contact the UniversityAffiliated Center for Developmental Disabilities,Chestnut Ridge Professional Building, 918Chestnut Ridge Road, Suite 2, Morgantown, WV26506, (304) 348-7980.

SUPPORTED EMPLOYMENTIN A RURAL SETTING

KrisAnn L. Carlsen, Administrative Assistant (Presenter)

Rural Employment Alternatives, (REA) Inc.is a private, non-profit agency that has providedtraditional sheltered work services to adults withdisabilities in a rural Iowa county for almosteleven years. REA has solved approximately 35- 50 consumers in work services. Consumersare placed in facility vocational tasks of clerical,assembly, and packaging, etc. and they work fora piece-rate wage. In 1988, REA began asupported employment program designed toplace consumers with disabilities into integratedemployment opportunities, with the ongoingsupport from a staff of job coaches. Currently,REA offers both shettered work services andsupported employment. REA and it's Board ofDirectors have made a firm commitment toprovide supported employment to all of its

consumers. It is REA's goal to totally convertfrom sheltered work services to providingsupported employment for all consumers. Thisconversion has not been, nor will be withoutobstacles and growing pains, but it has itsrewards for all people involved.

The onset of the program was met withopposition from various directions, includingagency staff. The staff providing work servicestraining placed a strong emphasis on accuracyof skills in specific segregated tasks. The facilitywas staffed with personnel with traditionalbeliefs; believing that what they were trainingwas the best for consumers. In the initial stagesof supported employment, the staff felt thatsupported employment would decrease theworkforce in the facility to the extent that

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contracts would not be completed In a timelyand efficient manner. However, k has providedthe opposite, an Increase in consumer skills,both In the facility and in supported employmentjobs. As individuals are placed in a communitywork slte, other consumers have the opportunityto learn new skills within the facility. Without themovement of individuals into supportedemployment, this new training of skills would nothave taken place.

REA began with one job coordinator, hiredthrough a grant project with the local university,University of Iowa That individual wasresponsible for the development as well as thecoaching of lob sites. In one year, REA hadplaced ten Individuals in community job sites.Today over 50% (about 25) of the consumersserved by REA work at individual community jobsites earning at or above minimum wage.

Janitorial and food service opportunities werethe most readily available pla,mments. We

developed sites that required anywhere fromonly two hours of work In a week to those thatrequired 40 hours of work in a week. Thoseindividuals that needed the most supervision anddid not have the stamina for more hours of wort,were placed in the positions with minimal hours.We have found that those jobs offering only afew hours a week are not cost effective. Theyrequire a greater percentage of on-site time fromthe job coordinator. And, after a year al id a hatfof providing services to those sites, we graduallyeliminated them. Like most agencies providingsupported employment services, a creaming ofthe crop took place with our first placements.We were looking at getting our image changedfrom that of a traditional sheltered workshop tothat of a community employment service foradults with disabilities, and wanted to put ourbest foot forward. Although the program hasbeen offering employment opportunities in

traditional food and filth positions, the agencyis now attempting to diversify the jobopportunities for consumers. Diversification interms of the kinds of job opportunities, as well asthe type of supported employment modeloffered. Of course, we are dealing with thegeneral business community and rely on theiremployment needs.

Currently 99% of our placement sites are

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individual job settings. The greatest number ofconsumers served Include Individuals withmental retardation and mental Illness. Otherdiagnoses includes autism, physicalimpairments, and dual-diagnosis disabilities. In

an effort to place everyone, including those withsevere disabilities and typically not placed In thecommunity, REA will have to utilize othersupported employment models In addition to theindividual work sites. These models include:dispersed heterogeneous placement model,mobile crew model, and the enclave model.Because the agency believes that integrationwith the general work force Is a critical Issue, wehave resisted developing enclaves or mobil workcrews. These two types of models typically donot offer opportunity for the consumer toassociate with other employees. In our efforts toget all consumers placed, we will be looking atthe development of such models for thoseindividuals for whom an individual site is notappropriate for their disability. It is a challengethat REA staff is willing to take on.

REA currently uses the VirginiaCommonwealth University RehabilitationResearch and Training Center (VCU-RRTC)integration index to develop job sites that willoffer the best opportunity for persons withdisabilities to mainstream with their community.A potential job Is rated and given one of thefollowing scores:

1. Individual experiences no contact with non-disabled people other than service workers,immediate family members or volunteers.

2. Individual's contacts with non-disabledworkers were incidental to their tasks and didnot provide cwortunities for the developmentof ongoing social relationships.

3. Ongoing opportunities to interact with non-disabled workers throughout the day innonwork activities (breaks and lunches), butthc assigned job tasks did not require directinteraction with other workers.

4. Opportunities to interact with non-disabledworkers in work and work related activities onthe job site.

5. Person has the contact with non-disabledworkers within and outside the work site.

When developing a site we require that theintegration be at least during breaks and lunches(#3). It is preferred that integration be a naturalpart of the job position (#4 or 5).

Another item that is considered whendeveloping jobs is transportation. Transportationtends to be the largest barrier of supportedemployment and the development of job sites inrural settings. In an effort to develop a costeffective program model, consumers are placedIn job sites of close proximity with comparablehours so that a job coach can support morethan one consumer with less transportation timeand expense. Our county transportation systemhas been willing to detour off of regular routes toaccommodate us. Individuals have been placedinto work sites in or near their homecommunities, all of which have a populationbase of between 900 - 2500. When developingopportunities in smaller communities the jobpossibilities need to be creative. Manybusinesses are small, locally run stores, thatutilize only family employees. In most everycommunity over 1500 in population, there is amanufacturer or larger business that requires alabor force. If appropriate job possibilities arenot available in the consumers local community,we have developed the, in larger cities inadjoining counties. We hav had to tap into anycommuting systems that may run from thesmaller communities to a larger one, for ourtransportation needs. Parents, co-workers andother car pools are utilized when the jobcoordinator can estabhh them. As a last resort,REA will transport a consumer to or from acommunity job site.

The agency has worked over the last threeyears to obtain funding to expand our supportedemployment program. Grants have beensecured by pooling efforts with other ruralproviders in surrounding counties. REA's initialgrant from the University of Iowa was tor thedevelopment of new placements for moderate tosevere individuals to be placed into communityemployment sites. This `Coordinated ServicesGrant' allowed REA to hire one full time jobcoordinator. In November 1987, an advisory

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committee was developed to discuss possiblestrategies and barriers to placements. Thecommittee consists of a diverse array of people:U of I personnel, REA staff, parents, employers,funding service providers, and school personnel.The committee meets 6-8 times annually. Todate REA has collaborated with similar agenciesand universities to receive funding andparticipate in a variety of grant projectsincluding: The Association for Persons withSevere Handicaps (TASH), Iowa division ofMH/MR/DD, Job Training Partnership Act, andSupported Employment Managc nt InformationSystems data base project throuun the Institutefor Social and Economic Development. Grantprojects have focused on the development of jobsites, the expansion of hours on sites, theplacement of more severely involved individuals,expansion of public relations, and providingtechnical assistance. This summer REA begana new program designed to place persons withsevere/profound mental disabilities and physicaldisabilities into supported employment, using adispersed placement model. Anotheropportunity will be REA's participation in VirginiaCommonwealth University RehabilitationResearch & Training Center's 'Natural SupportTransitioning Project` when it is funded. VCU-RRTC and John Kregel are first-rate leaders insupported employment. This project willincrease REA's reputation on a national level.Other efforts to diversify funding includes thedevelopment of PASS plans and IRWE plans forconsumers receiving SocialSecurity benefits. Inaddition, REA has received United Way funds forthe program. With the recent stress on the stateand local budgets, REA has determined that themore diversified we are in our funding, the moreopportunities we will be to offer individuals withdisabilities to gain community employment.

Ongoing funding has been maintained byredirecting facility-based resources into thesupported employment program. Theorganizational table has been reorganized toinclude a mid management position in thisprogram. in addition, we have reduced thenumber of in-facility staff and increased thenumber of job coordinators. Today we have 7.5job coordinators for our supported employmentprogram. All of the positions are classified as

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coordinators but we have designated oneindividual to do job development only. Anothertwo IndMduals do development and coaching,and the remainder are primary coaches. REA isadamant about keeping on the cutting edge withour supported employment program. We takeadvantage of all training opportunities that areavailable to our staff. REA has utilized regionaltraining offered through the University ofMissouri. We have certified coaches, trainedmanagement and have acquired a network ofvaluable resources through this participation.REA is dedicated to the training and continuededucation of ail staff. There is a $300 allowanceannually for staff to obtain credits for coursesthat further education. This allowance is inaddition to the rehabilitation training in-servicesand conferences that REA staff attend. REA

staff have also visited other successfulsupported employment programs around thecountry. They have brought back new ideas andinsight into where we should be going.

With the recognition of our supportedemployment program on the local, state andnational level, there has been an increase Inreferrals for the program. After the first year ofsupported employment at REA, an increase of50% in numbers of referrals was obtained. Weare now receiving referrals from the local schoolprograms. Three years ago those individualsgraduating wanted nothing to do with theservices we had to offer. Surrounding countiesare also referring individuals to our supportedemployment program. The expansion of ourreferral sources to neighboring counties hasprovided an opportunity for REA to develop asharing system with other rehabilitationagencies. We have found that a joint effortprovides for a strong system to approach

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employers with. A give and take understandinghas been established between a pool of ruralservice providers. What we are all after Is thesame, community job opportunities for ourconsumers.

The outcomes for consumers served throughthis program have been dramatic in terms offinancial earnings, friendships with non-dIsabledco-workers, and integration Into the community.The program model supports job placementsbased upon consumer interests rather than aprerequisite skill level. Job coaches make anongoing commitment to the consumer andbusiness. Although, job development andplacement in a rural setting is challenging interms of employment opportunities,transportation, community perceptions, andother issues, it is a workable model that needs tobe provided as an alternative to a segregatedfacility-based program.

REA'S key to a successful rural-basedsupported employment program has been thecommunication and cooperation among allpersons involved. Department of HumanServices, Department of VocationalRehabilitation, county transit system, Universityof Iowa, residential providers, parents, JTPA, andconsumers all have been consulted whenlooking at providing a job placement for anindividual. REA has been recognized as aleader in supported employment, the creditneeds to be extended to all people who haveworked with us.

For more information contact RuralEmployment Alternatives, Inc., P.O. Box 24,Conroy, IA 52220, (319) 662-4043.

COMPLIANCE WITH P.L. 99-457IN RURAL COMMUNITIES

Thelma Robinson, Pediatric Nurse Specialist (Presenter)

Anew federal program has been created

for infants and toddlers who have developmental

delay and their families through the Part Hcomponent of P.L 99-457.

A long-range goai is to reduce the need for

special education and diminish thu possiblitythat children will be institutionalized. States have

been challenged to: (1) develop and implement

statewide, comprehensive, coordinated, mufti-

disciplinary early intervention services; (2)

facilitate the coordination of early intervention

resources from federal, state, local and private

sources; and (3) provide quality early

intervention services.Immediately, questions arose from states with

rural populations. How can quality earty

intervention services that depend on the facilitation

of coordinated resourtes exist when there are only

minimal services and often no services at all?Creative solutions would be necessary to meet the

unique needs of the remote and rural population

where a shortage of available personnel and

resources exists. Atthough federal expectationsseemed unsurmountable, the state ofAlaska began

planning in 1988 for the expansion of the present

Infant Learning Program to comply with P.L 99-457

for all infants and toddlers, regardless of where the

children an.i their families lived. Several principles

emerged regarding earty intervention services for

infants and toddlers with special needs and their

families who live in rural and remote regions.

The family, as defined by its community and

cutture, is the primary support system for infants

and toddlers.

Children are dependent upon their families,

which makes a family-centered approach essential

in early intervention. The definition of family must

reflect the diversity of famity patterns and

structures.

Children and families are more responsive in

familiar and convenient settings.

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Community based services are essential.

Infants, toddlers and their families are bestserved in their own homes and communities.

Services are determined by the needs of

the children and their families versus theavailability of services.

Too often in rural communities needs offamilies are not met due to lack of services orservice providers. New strategies for providingservices would have to be developed in orderto meet the needs of children and their families

living in rural communities.

r3asic everyday needs for families holdpriority over professionally devised

schemes.

inadequate housing and food, unsafe water,unemployment, lack of transportation, child care

and health care may cause rural familiesconcern. Early Intervention Programs must work

cosely with other programs to make certain that

these concerns are resolved. Families can then

turn their attention toward healthy growth anddevelopment of their children with special needs.

Parents must become partners withprofessionals in developing the IndividualizedFamily Service Plan or the plan will not be

successful.

Competent rural services reflectresponsiveness to the uniqueness of the

family and community.

Unfortunately, professional service providers

may be insensitive to local cuttures or

communities. It is important to recognize that°differences" are not the same as "deficiencies.'The professional must work hard to understandhis/her own culture and at the same time respectcultural or community diversity.

Significant issues frequently encountered bythe rural service provider include the following:

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GeovraPhIc isolation. It is difficult to maintaincontact with families who live in hard-to-reachrural and remote areas and/or families. whomigrate seasonally to wort in subsistencefishing and hunting or agriculture.

flretermajgristirtradchild rearing practices. Families may not

tidily accept western world concepts.

Mistrust for professionals. Profenionals haveoften over-whelmed families with professionaljargon and ideas. Professionals may comeand go so frequently that a trust relationshipcannot be established.

Significant issues for rural program plannersinclude:

Burn out and attrition of professional staff.Local professionals lacking in specializedtraining.7.me-consuming collaboration with otherprograms and agencies.

A number of action steps to assure that allfamilies have access to adequate andappropriate services are In place. Otherprogram needs have just been identified andstrategies are in the planning phase. Variouscomponents of the law will be discussed inregard to practical, workable strategies forserving families in remote and rural regions.

Public AwarenessThe following examples are strategies for

promoting early intervention in ruralcommunities.

A Russian 'Old Believer' parent of a childenrolled in the Infant Learning Program wrote apamphlet describing the services in her nativelanguage for the families in her remote fishingcommunity.

A group of Athabascan parents got togetherand made posters describing a new InfantLearning Program. They advised the newteacher as to strategies that would bestintroduce services into their village. The parentssuggested offering community classes in growthand development in order to emphasize the

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Importance of developmental screening andearly intervention.

A local radio station invited a statewide travelteam visiting a hub arctic community to shareinformation during a local talk show. Theydiscussed the benefits of a multidisciplinaryevaluation for Infants and toddlers with specialneeds. After each team member reported onhis/her specialized role, the information wastranslated into inuplat by a well known nativewoman proficient in both English and the Eskimolanguage. This information was radioed toseven villages above the arctic circle.

Family InvolvementFamily involvment is crucial. The following

are examples of family participation.Native American parents completing an

evaluation form for a multidisciplinary clinicasked that coffee and doughnuts be served tohelp them relax for their stressful event. Parentsare now telling professionals how services canbe offered more effectively.

A committee on a Task Force spent monthsdeveloping a coordination form for parents.When the form was presented to a panel ofparents, the committee was told that the formwas appropriate for sharing information but thatthey would not use it to give permission forservices. The Task Force learned theimportance of involving parents in planning fromthe beginning.

A parent was a team member participating ina national program for multidisciplinaryevaluation teams. This team then trained othercommunity-based evaluation teams throughoutAlaska. The parents involved in this national andstate team training effort gave new insights as towhich team models worked best for parents.

Screening/AssessmentInformal observations during a screening

activity led one evaluator to project that Alaskachildren in the 0 through 2 age group wereslower in gross motor development compared tothe national norm. Could Alaska's long darkwinters play a role in this particular phase ofchild development? Test results arequestionable for children living in the arctic,when test standardization was completed on

u

children living in a temperate climate. Alaska isplanning to develop statewide norms of theirunique population for the most frequently useddevelopmental screening device. Communitiesin the far north can then better plan forprograms that will enhance the development ofyoung children.

A few Alaska communities are alreadyrecognUng the importance of toddler winterrecreational programs. In one rural communitythe Infant Learning Teacher frequently visitsthese popular sessions, getting to know parentsand sharing information about growth anddevelopment and the community'sdevelopmental screening program.

One aspect of P.L 91-457 presented anoverwhelming concern for rural corgalunities.The new law requires services to be in effect 45days after referral, but first a multidiscipioaryevaluation must determine the child's andfamily's strengths and needs. Several yearsago, Alaska developed three levels of evaluationservices, making it possible for parents toaccess basic services in their own communities.Prior to this, all families from remote and ruralcommunities were asked to travel to a regionalevaluation clinic. A description of the levels ofevaluation services follows.

A Level I Evaluation is conducted by twoprofessionals who are either members of thecommunity or visit the 7^mmunity frequently.Assessment is an onf cess, and parentsmay opt for more information about their child Inthe subsequent assessments. A Level II

evaluation requires that a team of therapists visitthe village or rural community to conduct theassessment. The only time the family travels toa regional center is when the child needs a LevelIll comprehensive medical and developementalevaluation. The key here is to develop steps,beginning with basic services that are easilyavailable and attainable in the family'scommunity. The level of services are increasedas indicated by the child's and family's needsand their readiness for services.

A much debated national quet,tion is, 'Whichmodel works best for evaluating infants andtoddlers, the interdisciplinary or transdisciplinaryteam modeir. In the interdisciplinary team model,communication among team members is well

85

establishe Information is shared among teammembers and sufficient time is allowed forcollaboration. The transdisciplinary team modelpromotes teaching and learning among teammembers as they assume irderchangeable rolesand responsibilities. In Alaska professionals havediscovered ways to involve families of infants andtoddlers as full team members in both models.The key here is to develop flexible service deliverymodels that can be adapted and modified for eachcommunity.

servicesFamilies who live in rural and remote areas

have chosen a life of simplicity, versatility, andindependence. It is critical for early interventionprograms to continue to foster these positivecharacteristics of self-sufficiency. Therefore, ruralearly interventionists must plan and provkleprograms based on teachinn families how to carefor their special need infants and toddlers in theirown homes and communities versus the traditionalprofessional intervention in a clinical setting.Strategies should assist rural families to developconfidence in planning for, and conducting,activities that enhance their children's development.

Technology is a critical aspect in gettingservices to rural and remote communities. InfantLearning providers video-tape children for furtherconsultation or followup with specializedprofessionals. The teleconference can bring ateam together for problem-soMng of both clientand program issues. The FAX has reduced thetime between requesting authorization for servicesand the delivery of services.

Community health aides ha 9 been the primaryheatth service providers in the villages for years.This model will be implemented in the future withthe use of paraprofessionals in earty interventionservices. The key components here are training,supervision, and ongoing evaluation. Communityproviders are vital In informing the professional staffabout value systems and interactional styles of thecommunity and providing support to local families.

Staffing

Maintaining continuity of services with culturallycompetent clinicians for rural and remote regionswill continue to challenge program administrators.Some staff incentives that are orking include:

81

A waiver plan which allows fladbility in hiringprofessionals who wish to wok In mai remcteregions. A training plan is then developed toassist the professional gain experience and/oreducation in detident areas.

A 10 percent salary increment after a

professional has been an infant learning

provider for three years.

Recognition and selViCe avard for five or moreyears service.

All expenses paid to travel for continuingeducation and inservice training twice a year.This includes part-time therapists who serve onthe communtty-based evaluation team.

CollaborationListed below are some strategies that are

working:Parents, professionals and policy makers are

coming together in a task force that connectsprtvate, local, state and federal programs. There isspecific concern for the infant or child from a ruralarea who recetves services from an urban medical

center.The state university has made the following

advancements:

1. Courses are specific for rural early interventionproviders.

2. The media of telecommunications brings theclassroom to the student in his/her owncommunity. Professionals learn new skills andsent' video tape demonstrations back to theirinstructor.

Colfabortive efforts are occurring among local,state, and federal agencies. A pediatrician fromIndian lie)":1h Services (INS), through aMemorandum of Agreement, is serving on amuitidisciplinary t..Auation team funded by theState of Alaska 11.k, State of Alaska pays travelexperma and the IHS pediatrician evaluatesinfai ,; r: and toddlors

Policies and procedures that are not

appropriate for rural service delivery are beingchL..angeci. Exciting new models show how

36

services can be delivered more cost-effectively andwith grealer family satisfaction.

From Strategies to PolicyThe concluding step In complying with P.L 99-

457 Is the development of policy and procedures'lased on strategies that are working in ruralcommunities and remote villages. Standards foreach component of the law are being developedby a task force that is representative of parentsand professionals in both rurW and urbancommunities. Program guidelines with goals andobjectives are also being written. The final step willbe the revision of rules and regulations appropdatofor all Alaska Infants and toddlers regardies3 oftheir geographic location. (Figur* 1)

PRINCIPLES

S1RATEGIES

STANDARDS

.0"micximh. gummy RURAL and REGULATIONS

MP. 1

Alaska will be ready for ALL infants and toddlerswith special needs and their families...from the city,from the country, and from the villages in the bush.

The author wishes to acknowledge and thankall parents and professionals who contributedtowards this team effort of planning for thecompliance with P.L 99-457 in the state of Alaska

For more information contact Infant LearningProgram, Support Services, 1231 Gambell Street,Anchorage, AK 99501-4627, (907) 277-1651.

ReferencesBriggs, M.H. (1991). Team 4evelopment:Decision-making for early intervention. infait-Toddler Intervention: The Transdisciplinlry Journal,1, 1-9.

Mental Health Law Project. Will Early interventionprograms Reach Families in All Communities?,1101 15th St. NW, #1212, Washington, DC 20004.

FARM FAMILYREHABILITATION MANAGEMENT

Martha Wittkowski, Agency DirectorTherese Wi Ilkomm, Director, Farm Family

Rehabilitation Management (FaRM) ProgramChrystal Stanley, Assistant Director Farm Family

Rehabilitation Management (FaRM) Program (Presenter)

Over 17,000 lowa farm families are affectedby severe physical disabilities includingamputations, spinal cord injuries, back injuriesand neuromuscular disorders. In addition, thereare over 20,000 farm families affected by health-related conditions which limit their ability tocomplete essential farm arid independent livingtasks. Often, these disabilities prevent farmthmilies from continuing a rural way of life.

Today, with technology and support servicesoffered by the Easter Seal Farm FamilyRehabilitation Management (FaRM) Program,someone who is severely disabled can remainactive in a rural community. Farming is a way oflife that values the family working together for acommon goal. When one member is disabled,the entire family is affected. Psychologicaladjustment to disability can be extremelystressful for the entire family. The FaRMProgram recognizes this and pr ovidesencouragement and support for the entire family.In addition, FaRM provides rural rehabilitationservices to the family. These services promotea return to farming and the community, andincreased independence through adaptiveequipment, peer support services, and farm andhome modifications

Unfortunately, the delivery of rehabilitationtechnology services in rural areas can be verychallenging due to isolation; lack of financialresources; attitudinal barriers among individualswho lack information on assistive technologies;and the distance one must travel to obtainneeded services. To meet these challenges, theFaRM Program uses a community-based,consumer-responsive approach in providingassistive technology services. This approachmaximizes involvement in local resources andencourages the consumer to actively participatein all phases of the service delivery process.

87%

Because of the unique problems faced byfarm families affectild by physical disabilities, aPeer Technology Support Network has beenestablished. This Network is composed ofconsumers who are currently using assistivetechnologies and are willing to share theirexperiences with newly disabled consumers.Seventy one consumers participate in the PeerTechnology Support Network.

Another network, the Ingenuity Network, wasestablished tu aid in the service delivery process.This Network is composed of 68 Iowa volunteerswith varied expertise in designing or fabricatingassistive devices or modifications, obtainingmaterials, and locating commercially availabledevices.

In addition to these Networks, the FaRMProgram has developed a Me. ile Rural AssistiveTechnology Unit that can construct assistivetechnologies on site. The Unit is also used topromote statewide awareness of rural assistivetechnology and its impact on the independenceof persons with disabilities. The Mobile Unit, andthe Networks are essential in providingindependent living services to rural farm families.

Some of the unique challenges faced by aconsumer trying to live independently in a ruralarea include: mobility on rough rural terrain;making the farm home accessible using low costsolutions; and obtaining and maintainingpersonal care assistance.

In June of 1990 the FaRM Program held thefirst wheelchair rodeo featuring the mostpowerful outdoor electric wheelchairs on themarket. Vendors demonstrated the chairs'abilities to enter a barn over a 2-inch highthreshold; climb a 20 degree slope; maneuverthrough prairie grass; and cross an 186 deepmud hole with standing water. This event wasattended by approximately 117 farm families

from 15 states. In conjunction with this rodeo, aconference was held on Progress ki Farmingwith a Physical Disability. Seminar discussionsincluded: adaptive farm equipment, machinery,and buildings for frArmers with physicaldisabilities; recreational adaptations; alternativeagriculture ventures; and farm homeaccessibility.

Therese Willkomm, the director of the FaRMProgram, has produced a manual on hiring andmanaging a personal care assistant in a ruralarea. This manual includes ideas on recruiting,interviewing, and hiring an attendant andestablishing hours, wages, performanceguidelines, and performance reviews. The PeerSupport Network also advises on personal careassistant management.

The FaRM Program receives its funding froma variety of sources including agricultural relatedbusinesses and rural-based organizations suchas John Deere, Land 'o Lakes, the Farm Bureau,Successful Farming, Iowa Pork Producers, S.Luke's Foundation, Casey's General Stores, andthe Dole Foundation.

In addition, spee.al subcontract 9roject grantshave been awarded to the FaRM Pfogran fromPurdue University's Breaking New GroundProject; The University of Iowa's Program forAssistive Technology; and the University ofIowa's Agricultural Medicine Program. The FaRMProgram has also received funding from theRehabilitation Services Administration and aresearch grant from the National Easter SealSociety.

Since the FaRM Program began in 1986, ithas served over 360 Iowa farm families affectedby physical disabilities. Each year the programserves approximately 110 clients and respondsto over 400 technical assistance requests fromall 62 states and 7 countries. During the lastyear, over a quarter of a million dollars worth ofassistive technologies were provided to lowafarm families through the Ingenuity Network andMobile Unit. These technologies were providedthrough donated labor, materials, andtechnologies.

Because of Its unique features and success,the FaRM Program has been chosen by theNational Easter Seal Society to receive itsExcellence In Program Innovating Award. Theprogram has been replicated in Wisconsin andMinnesota. In addition, an amendment, initiatedby the National Easter Seal Society and theFaRM Program, was added to the 1990 UnitedStates Department of Agriculture *Farm Bill' toaid in establishing additional FaRM Programsthroughout the United States.

FaRM is a unique program that provides free,on-site rural rehabilitation services to farmfamilies affected by physical disabilities. Theprogram's consumer responsive approach hasmade it a forerunner in the rural rehabilitationfield.

For more information contact Easter SealSociety of Iowa, Inc., P.O. Box 4002, Des Moines,IA 50333, (515) 289-1933.

Innovative Rural Interpretationsof Disability Laws and Practices

THE COMMON THREADS

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"You can do things the right way or you can do the right thing." You may need toreview policies to see if the goal is success for the consumer. if rules and regulationsdon't work, change them. Grass roots efforts work best. Register voters and get out thevote. Hold legislative workshops; attend city counc:. meetings. Write legislation in clear,concise language. Identify nurturing and supportive ieaders. Use consumerism to itsbest advantage.

Be optimistic. Learn the rules well, be proficient in using them, then learn to workaround them when it meets consumers' needs. Professionals are sometimes prey to"statute-driven vulnerability"--responsibility for enforcing unpopular rules and regulations.Be pragmatic, consumer-driven and sensitive. Make standards consistent. Programsand program administrators may be a consumer's best advocates. Before talking topolicymakers, identify your assumptions about laws and discover any hidden agendasmembers of your group may harbor.

View the Americans with Disabilities Act as an opportunity to ihcrease communityawareness. Sponsor public school disability awareness programs. Educate everyone:consumers, providers, officials, the general public. Accentuate the positive; introduceindividuals and their individual needs rather than stressing compliance with requirements.Support universal accessibility. Use agencies, such as the Architectural TransportationBarriers Compliance Board and Easter Seal Society, as resources to interpret ADArequirements. Centralize information about the ADA. Use state housing and financeagency resources (see the presentations under "Support SI;stems" for a description ofhow Rhode Island did this).

Pilot projects can be designed to legitimately work outside existing rules. See whatother states are doing and decide if your state could replicate promising projects. It ispossible to do unusual programs or arrangements without violating the rules.Demonstration projects have advantages and disadvantages. Disadvantages: they'reshort-term and people are sometimos reluctant tc be involved in temporary activities;three-year timelines create difficulties--five-year projects would work better; grants andprojects are task-specific--long-range planning and staffing are difficult; there should bemore grants for administration activities and for research on community needs; althoughwe learn as much from failure as from success, grant projects jeopardize their fundingif they don't meet their initial objectives--results and final reports are sometimesmanipulated to create the illusion of success. Advantages: many demonstration andpilot projects allow funds to be used for training; if projects are successful, the fundingis usually renewed; projects are necessary for community-based reaearch anddevelopment, program planning, experimentation, and evaluation; projects allow providersto compete, although rebuilding the coalftion after the competition ends is crucial.

89

Stretch your resources; the same eligibility requirements could t instituted for severalprograms, so consumers qualify for more cross services. Use ti le same dollar severaldifferent ways. Be creEdive and positive; show how money Invested in a program reallyhelps an individual.

Remember: "Ignorance is bliss," and "It's easier to get forgiveness than permission."

Small Group Facilitators: Mike Jakupcak, Kathleen Miller Green, Kathy Jackson, ShawnClouse (Rural institute on Disabilities).

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90

CONCLUSION

Conclusion

THE MOST COMMON THREADS--sqz:;;N)s=0:,-,'s,s;;;:t W:0?-V,Wk,s't

The foffowing are statements that were reiterated in Common Threads sessions throughout theconference. While this doesn't qualify them as Eternal Rural Truths, they do distill the eXpOe0-40

d many rural people, from many different places and situation=

Unique rural programs often don't realizP that they are doing something extraordinary.Other programs may think they're doing something unique, when actually they're re-inventing the wheel. There may be inadequate contact with the "nutside world" ofdisability services due to lack of funds, time, and networking expertise; a nationalclearinghouse could improve communication.

Consumers are the most important element in the rural disability equation. Deliveringservices to consumers is the impetus for much of the creativity rampant in ruralprograms: the formal and informal interagency collaborations, the innovative servicedelivery techniques and training methods, the funding plans that stretch scarce dollarsand make them do double (or triple) duty.

Consumers need to be educated on the Americans with Disabilities Act, on how to askquestions of professionals, on raising their expectations of finding solutions to minorinconveniences and major problems. Consumers also need to be educators, working toincrease public awareness, sharing their experiences, providing peer support services forothers, and informing service providers of training and accessibility needs and preferredservice delivery methods. They ne, to be active participants in thehabilitation/rehabilitation process.

Service providers need to solicit consumer input and use consumers' expertise topersonalize training and to solve accessibility problems. The provider needs to besensitive to the consumer's cultural background, attitudes, language, vocabulary, andlevel of comprehension. The service provider must be a consumer advocate personally,publicly and politically. Consumers and providers must work together to developconsumer networks :lid consumer/provider/business coalitions

Disability programs must become an integral part of the rural community, bothcontributing to the community and sharing its resources. Service providers need to befamiliar witn local systems and procedures, and must adapt the program to serve localneeds. Natural support systems exist in rural areas--the wise service provider will becomeadept at recognizing and organizing them. Consumers and service providers mustparticipate in cultural and social ev ',its, join social oi ganizations, patronize localbusinesses, entertain and educate community members, hire local employees, and recruitvolunteers from all walks of life. The local media are crucial to maintaining visibility for

95

programs and issues. Every school, library, church, hospital, business, club ororganization, every branch of government is a poterwial resource. Every communitymember has some expertise or quality that could enrich a program.

+ The Americans with Disabilities Act is an opportunity for service providers to consultwith businesses and local governments on disability issues. Consumers and serviceproviders can enlist the cooperation of key decision-makers in the community bystressing that compliance with ADA guidelines will have a positive economic effect, byshowing how specific individuals with disabilitles will benefit, and by rew oding andpromoting barrier-free businesses and agencies. Rural pelpie must be vocal and visible;to ensure that they receive equal benefits from the Act.

Tedinology is particularly important in rural areas where transportation and loads maybe inadequate, the weather uncertain, and distances great. Telephones and computersprovide access to information and ease long-distance networking and conferencing.Many agencies and organizations provide information on toil-free lines. Public radio andtelevision can educate the community on disability issues. Public access television canalso be used to train consumers, and can provide equipment and technical expertise tocreate training videotapes for staff and consumers. Video technology is common evenin the most remote areas and videotapes can supplement training and evaluation overgreat distar les. Computers and telecommunication devices for the deaf allow those withcommunication disabilities access to other people. Technology can link consumers,service providers, the r )mmunity, , and the world.

Rural service providers need to be: Creative, Flexible, Credible, and Knowledgeable.

96

RURAL DISABILITYSERVICES NEnVOR

RURAL DISABILITY SERVICES NETWORK

Finding rural disability services is often a challenge for consumers and providers alike.Some of the best rural programs are not part of any disability information network, arenot part of the publishing circuit, and may not get disability publications or newletters.These programs have had no incentive to document their work for a national audience.In an effort to locate these rural resources, the Rural Institute on Disability is collectinginformation about programs that serve people with disabilities in rural areas.

The following is an initial directory of rural programs being compiled by the RuralInstitute. Included are programs from around the country, many of whom participatedin the Common Threads conference. The Rural Institute will publish a more completedirectory at a later date.

Included at the end of the Network section is a Rural Disability Services NetworkWorksheet. tf you know of a program which should be part of this network, please copythe worksheet, complete the informatic lnd forward it to the Montana UniversityAffiliated Rural Institute on Disabilities, 52 Cur.,: The University of Montana, Missoula, MT59812; or call (406) 243-5467 to speak with a soli person directly or (800) 732-0323 toleave a message and we'll get back to you.

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ALASKA

Access Alaska, Inc.3550 Airport Way #3Fairbanks, AK 990709

Contact: Bill Crandall, HAMMER Project Coordinator

Phone: 907-479-7940FAX:

TOD: 907.479-7940

Services: Services for individuals with severe disabilities, traumatic brain injuries, and visualimpairment are provided. IL skills training, housing referral and modifications, and a recreationprogram are also offered.

EFogibilky: No restrictions except the MHDD, Rural Villages, and Native Populations grants which havespecific guidelines.

Referral: Referrals are open.

'The best feature of this program is...:

General Comments: Access Alaska identifies its clients through referral and personal contact. Theprogram utilizes the state vocational rehabilitation division, hospitals, OTs, PTs, families and otheragencies as resources. Access Alaska serves a population of fewer than 50,000 in the interior bushcommunities which are normally not accessible by roads.

Infant Learning ProgramMaternal, Child & Family HealthDepartment of Health & Social Services1231 Gambell StreetAnchorage, AK 99501

Contact: Thelma Rohnson, Pediatric Nurse Specialist

Phone: 907-277-1651FAX:TDD:

Seivices: The Infant Leorning Program offers comprehensive, multi-disciplinary early interventionserVICes.

Eligibility:

Referral:

'The best feature of this program is...bringing an old program into compliance with PL 99-457.°

General Comments:

102

Kodiak Area Native Association (KANA) Phone: 907-486-5725

Vocational Rehabilitation FAX: 907-484: 2763

402 Center Avenue TDD:

Kodiak, AK 99615

Contact Joe Kelley, Project Director

Services:

Eligibility: To be eligible for KANA services the consumer must: have a physical or mental disability;

be handicapped to employment; be Native American; and/or have reasonable expectation that they

can be employed.

Referral: Native Americans are encouraged to apply.

'The best feature of this program Is...the flexibility of the KANA program to meet the individual needs

of the people it serves.'

General Comments: The KANA project uses medical, physical, psychological and vocationa!

assessments to identify its consumers. They use physicians, mental health workers, PTs, OTs, and

VR counselors as resources. 'Rural' may mean an outlying area on the road system around Kodiak

City or it may mean a Kodiak village accessible only by air.

Sitka PACS: Center for CommunityPO Box 6069, 201 Katlian, Suite 104Sitka, AK 99835

Contact: Margaret Andrews, Rural Services Coordinator

Phone: 907-747-6960FAX: 907-7474868TDD: 907-747-6960

Services: The Center for Community offers independent living, community access, vocational, infant

learning, functional skills for youth in schools, respite, assistive technology, parent support, and a

community resource netwoit

Eligibility: The consumer must meet Alaska's state guidelines for developmental disability.

Refenal:

ribe best feature of this program is...its individualized service that is parent and/or focus person

driven.'

General Comments: We are looking for the outcomes each client or family indicates THEY want.

'Rural' means the four villages outside Sitka that must be accessed by ferry or floatplane.

103

ALABAMA

Stateside Independent Living Program3421 5th Avenue SouthBirmingham AL 35222

Contact: Hhonda Stark, Lead Specialist

Services:


Eisgibirty: Eligibility Is determined try Alabama's Vocational Rehabilitation Homebound Program or theregular VR program.

Referral:

The best feature of this program is...our frequent contact with clients and our peer support services.'

General Comments: 'Rural' means being isolated from agencies and services (especiallytransportation). Resources are extremely limited and many of our rural counties are impoverished.Social interactions and skills are poor.

ARIZONA

independent Living ProjectOffice of Special Education and Rehabilitation ProgramsPO Box 1420Window Rock, AZ 86515

Contact: Donna J. Chacho, ILP Coordinator

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Phone: 602-871-7491FAX: 602-871-7474TDD: 602-871-5076

Services: The Independent Living Project provides IL skills training, self-care, transportation, referralsand coordination, rehabilitation engineering consultant evaluation, and psychological and vocationalevaluations on a contractual basis.

Eligibility: The consumer must be severely disabled.

Referral: Clients are accepted as walk-ins or are referred from other programs such as hospitals,community health programs, schools, the Social Service Administration, parents and family members.

`The best feature ci this program is...being persistent in helping clients break through barriers, toovercome. Instilling in their minds the desire to get involved, to take charge of their lives.'

General Comments: Outcomes would be to work with the client to identify problems and ways toovercome the problems.

104 ' I

IOWA

Farm Family Rehabilitation ManagementEaster Seal Society of Iowa, Inc.PO Sox 4002Des Moines, IA 50310

Contact Chrystal Stanley, Assistant Director


Services: The FeRM Program provides agricultural woricsite modification, peer support, independentIMng, health care coordination, and vocational rehabilitation.

Erigibirity: The consumer must have a physical disability and live or work on a farm.

Referral: Anyone may refer a consumer by calling or writing.

`The best feature of this program is.,..we are consumer responsive and provide on-site direct service,free of charge.'

General Comments:

KANSAS

UNK, Inc.PO Box 1016, 1310 WalnutHays, KS 67601

Contact: Brian Atwell, Coordinator

Phone: 913-625-2521FAX:

TDD: 913-625-2521

Services: L INK, Inc. offers information and referral, independent living skills training, advocacy, peercounseling, deaf services, housing, personal care attendant services, a recreation program,transportation, and ADA technical assistance.

Eligibility: Any aduit with a disability is eligible for LINK, Inc. services. Some teens who are not servedby the school system may be eligible.

Referral: The consumer may request services and interagency referrals are accepted.

'The be:)I feature of this program is...that it's consumer-driven and rural-based.*

General Comments: Individuals' needs are assessed through evaluation; LINK, Inc. then uses anyavailable resource to meet the needs of their consumers.

105

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New Horizons4030 Wallace AvenueShreveport, IA 71108

Phone: 318-635-3652FAX:TOD:

Contact: Ruth McHalffey, Services Director

Set Aces: New Horizons offers independent living, peer counseling, pre-employmentskills training,independent living skills training, leadership training, minority outreach, and adapted aquatics.

Eligibity: Any adult with a disability who Is capable of living independently Is eligible for New

Horizons' services.

Referral: Consumers have direct access to New Horizons.

1i.1 best filature of this program is...that it's consumer-controlled. The consumer sets his/her owngoals and determines when those goals have been met.°

General Comments: Case managers conduct an intake interview using the agency's IL skillsassessment instrument. Goals are then set. The consumer is placed in a group or indbidual livingsituation or referred to a more appropriate facility.

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Calvert Associationfor Citizens with Mental Retardation, Inc.PO Box 1860Prince Frederick, MD 20678

Corte= Kate Rollason, Executive Director

Phone: 301-535-2413FAX: 301-535-1314TOD:

Services: The Calvert Association provides group homes, vocational and supportive employment,family and individual support, respite services, transportation, and referral.

Eligibility: All children with any disability and adults with mental retardation in Calvert County, MD, areeligible.

Referral: The Association accepts all applications which meet eligibility criteria.

°The best .eature of this program is...an integraMd day care, a nationally recognized respite and familysupport program, a consumer-centered approach to residential, vocational, supportive employment,and family and IndMdual approaches.°

General Comments: The Calvert Association provides real homes, real friends, and real jobs forpeople with mental retardation. We will open a group home for children in November, 1991.

106

MICHIGAN

Vintage Program and Independent Living ProgramMichigan Commission for the Blind411-0 East GeneseeSaginaw, MI 48607

Contact: Dr. John E. Crews, Independent Living Supervisor


Services: The program provides services for individuals with hearing impairment, physical, mental andemotional impairments.

Eligibility: The consumer must be legally blind and/or medically certified.

Referral: The Commission refers to other agencies.

Imo best feature of this program is...the direct services between client and rehabilitation teacher.°

General Comments: The agency uses home screening, hearing and vision clinics, and self referral toidentify consumers. The intention is to improve the clients' daily living skills; helping them to remainindependent and living in their own homes. 'Rural° means great distances between the client andhome base.

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Functional IndustriesThe Wright Connection and the Seniors' ProgramBox 336Buffalo, MN 55313

Contact Barb Tevogt, Coordinator

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Phone: 612-682-2910FAX: 612-338-3097TDD:

Services: Functional industries offers a supported retirement day program, retirement skills training forseniors with developmental disabilities, a training and habilitation program with vocational emphasisfor younger adults, and transportation.

Eligibility: Functional Industries requires that the consumer be 21 years of age and classified ashaving mental retardation before the age of 21 to qualify for services.

Refenal: Human services agencies, schools and residential facilities may make referrals to Functionalindustries.

"The best feature of this program is...versatility. We deal with all needs of each individual, not Justvocational.'

Gemmel Comments:

107 :4 7

Opdons InterstateResource Center for kidependent Living318 3rd Street, NWEast Grand Forks, MN 56721

Crntact Randy Sorensen, Operations Manager

Phone: 218-773-6100FAX: 213.773-7119TDD: 218-773-6100

Services: Options interstate offers information and referral for services and housing, a resourcecenter, attendant care training and registry, supervisory nurse training and registry, peer support,service coordination, and independent living skills training. Transition from school to community livingservices, outreach present ations, self-advocacy training, systems advocacy, recreation services, andrecreation I & R for federal and state agencies are also offered. A computer is available for adaptiveequipment.

Eigiby: Options Interstate Resource CIL uses the federal definition of disability: severe mental orphysical disability with a reasonable expectation thel IL seMces will be of benefit. The Center doesnot refuse services.

Referral: Referrals may be made by people in the community, other agencies, or by walk-Ins.

'The best feature of this program is...our open door policy. Anyone can come in with any problem ordisability and our staff will let the paperwork go and try to help that person.'

General Comments: The program covers 15,000 square wiles in Minnecota and North Dakota andhas existed for five years. it provides technical assistance to other beginning programs. OptionsInterstate Resource Center sponsors an annual summer *End-Dependence Day' celebration, withaccessible fishing and other water activities, Native American actMtles, games and prizes.

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Services for Independent Living1301 Vandiever Drive, Suite 0Columbia MO 65202

Phone: 314-874-1646FAX:

TDD: 314-8744121

Contact: Brain Dale, Rural independent Living Specialist or Steve Banister, Program Director

Services: Services for Independent Living offers independent IMng skills, assessment, personal careassistant training, PCA management training, head injury support services, accessibility assessment,transportation, rights and benefits counseling, and peer support.

EligibWity: Services for Independent LMng has no eligibility requirements or restrictions.

Referral: Consumers may call, write, or walk-in.

°The best feature of this program is...that the staff are willing to work with the consumer, not for theconsumer.'

General Comments: The agency is consumer-directed and involved in coalitions and legislativeadvocacy.

0.**:,: ,:.:::-:::,,,v. ..........

108

)::**A:;;;;;;,::::.......}' "..

Southwest Center for Independent Living (SCIL) Phone: 417-8861188

1856 East Cinderella, Suite E FAX:

Springfield, MO 65804 TDD: 417486-1188

Contact Ann Morris, Executive Director

Setvices: The Southwest Center for Independent Living offers Independent living skills, alvocacy,

peer support, a personal care attendant program, and support groups for Individuals with spinal cord

injury, post-polio conditions, and heating impairment. It also offers a resource library, an information

and referral program, and voter registration. In addition, the Center conducts accessibility surveys

and publishes a bimonthly newsletter.

Eigabaly: Ail persons In Southwest Missouri with any disability who are 16 years or older, are eligible

to receive services from SOIL In addition, community services are provided to the general public.

Referral: Referral policy is open.

'The best feature of this pogrom Is...consumer control makes the difference.'

General Comments: Independent IMng is based on the concept that people with disabilities know

their needs best and have the right to make decisions regarding their daily lives. Consumer control

means management by people with disabilities. At SOIL, the majority of both the board of directors

and the staff are people who have disabilities. It also means that the people who receive our services

decide which services they want and set their own goals for increased independence. Theindependent IMng process at SCIL is one of teamwork. Advisory Councils composed of people with

disabilities are one way that SCIL keeps informed of the ongoing needs and issues vital to our work

toward achieving a barrier-free society.

MONTANA'EWEN.

Blaine County Activities, Inc.PO Box 457Harlem, MT 59526

Phony: 406-353-2611FAX:TDD:

Contact Dan Richman, Executive Director

Services: Services for individuals with developmental disabilities.

Eligibility: The consumer must have a developmental disability.

Referral: Statewide waiting list.

lb° best feature of this program is...placement of individuals with developmental disabilities into the

job market.'

General CommeAs: Blaine County Activities uses a screening process to identify and assess

individuals. The program trairs indMduals on normalization and main-streaming into society. Rurar

means being long distances from specialists and medical services.

North Central kidependent Living Services Phone: 406-452-9834104 2nd Street $outh FAX:Great Falls, MT 59405 TDD: 406452-9843

Contact Tem Osborn, Executive Director

Services: The North Central Independent Living Services provides case management, peercounseling, Information and referral, and Independent living skills training.

Bgibility: The consumer must have a disability to be eligible for Nath Coital Independent Living SelViCe&

Referral: Referrals may be personal or through the aging services network.

'The best feat= al this program

General Comments:

-%tKAV,s.:4,k6A, ,,AvA4MN*

Occupational Therapy Assodatesof Bozeman, Livingston, Butte, and Great Falls300 North Willow, Suite 2003Bozeman, MT 59715

ak-x.* !W, skt"ga


Coriact Linda Botten, OTRIL., President

Services: Occupational therapy in all service delivery areas.

BigbritY:

Referral: Referrals for Occupational Therapy Associates services must be made by a physician.

"The best feature of this program is...meeting specific consumer needs, having flexibility, and workingon a contractual base.'

General Comments: Occupational Therapy Associates is increasing outreach to rural communities.

\AVW01,:vatv;

swami- Independent Living Center, Inc. Phone: 800-843-96551280 South 3rd West FAX:Missoula, MT 59801 TDD: 406-728-1630

Contact Michael Regnier, Advocacy Coordinator/IL Specialist

Services: SUMMIT offers independent living skills education and training, attendant managementtraining, peer coumeling, family counseling and education, personal and systems advocacy, supportgroups, recreation, transitional services, an equipment rental program, a telephone relay andinterpreter services, a resource library, personal care attendant training and referral, disabilityawareness and sensitivity training, consultation, and volunteer services.

Eligibilky: People with mobility impairments, neurological disorders, hearing impairments, learningdisabilities, visual impairments, and other disabling conditions are eligible for SUMMIT's services.

Refenal: SUMMIT accepts referrals from health care professionals, other agencies, and consumers.

*The best feature di this program is...the newly emerging advocacy program.'

110

Geneml Comments: A needs assessment tool developed by SUMMIT staff is used to Identify/assesS

consumers. Any avaliable resources, such as grants, state funding, and referral to other sources, are

used. °Rural' defines most of SUMMIT'S seven county service wea.

Vocational Rehabilitation Services (Bozeman)Montana Department of Social & Rehabilitation Services

202 South BlackBozeman, MT 59715

Contact Susan Miller, Vocational Rehabilitation Counselor

Services:


Eligibility: To qualify for Vocational Rehabilitation services in Montana, a consumer must have a

vocational disability and have a reasonable expectation for employment.

Menai: Refenal may come from any source.

°The best feature of this program is...that we help people get back to work.*

General Convnents: Montana Vocational Rehabilitation uses vocational, psychological, and physical

evaluations to identify and assess potential consumers.

Vocational Rehabilitation Services (Kalispell) Phone: 406-755-5408

Montana Department of Social & Rehabilitation Services FAX:

PO Box 2357TDD:

Kalispell, MT 59903-2357

Contact: Carl Newton, Vocational Rehabilitation Counselor

Services: Vocational rehabilitation services including training and related diagnostic services.

Eligibility: Consumer must merit state requirements for eligibility.

Referral: Applicants may ta referred by anybody or themselves.

'The best feature of this program is...is that we provide services.'

General Comments: The State of Montana has three criteria to identify/assess consumers: 1. adiagnosable disability; 2. a vocational handicap; and,3. reasonable expectation of employment. The

agency uses any resource that is available. Montana's Vocational Rehabilitation Services' mission is

to find successful, compatible employment for consumers.

Vocational Rehabilitation SENVICOS (Northern Cheyenne) Phone: 406477-6722

Momingstar Opportunities FAX:

Resources & Employment (MORE) Workcrew TDD:

Box 67Lame Dear, MT 59043

Contact: Claude Dodson, Director

Se Mces: The Northern Cheyenne Vocational Rehabilitation Services offers vocational rehabilitationservices and a rehabilitation facility.

Eligbety: The Northern Cheyenne Vocational Rehabilitation Services follows federal regulations forvocational rehabilitation: The consumer must have a physical or mental disability; the disability matbe a barrier to employment; and there must be reasonable expectation that the services will help theclient to become employed.

Referral: Referrals must be made in writing and include a signed release to permit the agency toprovide services.

°The best feature of this prom= lememployment outreach.'

General Commits:

.v\mazawNxm, vtazwy ss.m.:4>smsw\

Yellowstone Valley Center for Independent Living, Inc. Phone: 406-259-51813304 2nd Avenue North FAX:Billings, MT 59101 TDD: 406-259-5181

Contact Rena Metcalf, Independent Uving Coordinator

Services: Information and referral, guidance and counseling emotional support, advocacy and directassistance are services offered by Yellowstone CL

Eblity: Medical documentation of a severe disabling condition is required by Yellowstone CIL. forsetvices.

Referral:

'The best feature of this program is...:

General Comments: 'Rural° is eabtem Montana - it is 4-1rsely populated and tends to be veryconservative. A lot of innovative approaches must be taken.

FonewymetzawsLaymEmstnsmarevalseenummanstmasuMontana University Affiliated Rural Institute on DisabilitiesThe University of Montana61 Corbin HallMinoula, MT 59812

Phone: 406-243-5467FAX: 406-243-2349TDD: 406-243-5467

Gcrtact Diana Spas, Information and Dissemination Specialist and Kathy Dwyer, Information andDissemination Specialist

Services: The Rural Institute conducts research and training activities with health, education andweifare agencies, as well as private organizations that focus on rural needs. It provides technicalassistance to organizations and agencies in rural areas. The Rural Institute also collects, coordinates,and disseminates information related to rural disability issues.

Eligibility: Anyone interested in rural disability issues may contact the Rural institute.

Referral: Anyone interested in rural disability issues may contact the Rural Institute.

°The best feature of this program is...its effort to improve the well-being, self-sufficiency, andproductivity of Americans with disabilities who live in rural areas.'

112

1

General Comments: The Rural Institute conducts seMce, training, technical assistance, research andinformation dissemination activities which help people with disabilities in rural areas find quality socialand educational swims and health care. Increasing the quantity and quality of disability seMcesprofessionals and cars providers in rural settings Is major goal of the Institute; as well as developingstate-of-the-art approaches to meet the challenges of living with a disability In a tural area. The RuralInstitute also provides information about rural issues to the public and professional&

NORTH CAROLINA

Family Caregiver ProjectUniversity of North Carolina at CharlottePsychology, UNCCCharlotte, NC 28223

Contact: C.D. Femaid, Co-Director


Services: The Family Caregiver Project provides research and development, training, curriculum andtraining development.

Referral:

°The best feature of thiq program is...helping families caring for different disabilities to come togetherto learn from and support each other.'

General Comments: The Family Caregiver Project publishes training manuals ('The CaAngManual) to provide information and support for families caring for relatives wtth developmentaldisabilities, mental illness or impairments of aging. We also have a 'Leader's Manual" for families orprofessionals leading education and support groups.

NORTH DAKOTA

Vocational RehabilitationState of North Dakota400 22nd Avenue, NWMinot, ND 58701

Contact Steve Dornburg, Vocational Rehabilitation Counselor


Services: Vocational rehabilitation services and independent living programs are offered by the NorthDakota Office of Vocational Rehabilitation.

Eligibility: Fekk.ra! .riteria determine eligibility.

Referral: Referral is made for anyune requesting services; individuals with severe disabilities aregiven priority status.

113

°The best fauna* at this prow= is...

General Comments: The North Dakcda Office of Vocational Aehabilftation serves Minot, a city alapproximately 30,000 residents. It also provides services to many Small towns al less than 3,000people plus large areas of farms and ranches.

IMM

NEW MEXICO

Las curnbros Warning ServicesBox 1362Espanola, NM 87532


Contact Donna Sanchez, intake Coordinator and Maribeth Culpepper, Respite Director

Services: Las Cumbres provides an array of services including respite care, behavior managementnutritional assessment and counseling, and public awareness education, transition from earlychildhood to public school, early childhood screening clinics, an Integrated preschool and a for-profitir.tegrated daycare, vocational asssssment, orthopedic clinics, physical therapy. Las Cumbres'supported employment program uses enclaves, a benchworir model, and mobile crews. A grouphome and community- and home-based supported living are also features.

Elogiblity: Eligibility requirements vary with each program. The childrens' programs require that theindividual be at risk for developmental disability, mental delay or be developmentally delayedaccording to federa: definition. Adults must be developmentally disabled. To qualify for therapy,consumers must be eligible for state funding, private insurance coverage, or be covered by theirschool district.

Referral: Referrals for most child and adult services may come directly from doctors, schools, earlychildhood screening clinics, or the individual. A doctor's referral is required for therapy.

°The best feature at this provam is...its ability to meet the unique needs of individuals in a tri-cuttural,very economically-diverse area, and to retain its qualified staff.'

General Comments: The agency offers 1-3 year stipends for bilingual staff (English and Spanish/signlanguage/Native American) and offers college stipends to local residents in return for employment withthe agency. The therapists are bilingual.

OKLAHOMA

Progressive Independence121 North PorterNorman, OK 73071

Contact Candace Low, Executive Director

x,

Phone: 405-321-3203FAX:TDD: 405-321-2942

Services: Progressive independence offers independent living skills training, peer counseling, andpersonal assistance training and referral. They also provide accessibility assessments andmodifications, employment training and placement and family and consumer support groups. The

114

1 HI

agency also offers sernices to people with hearing knpakments, an equipment loan program plussocial and recreational programs.

Progressive Indep mdence provides services to all citizens with dIsabilitles and theirfamMea

Menai: Progressive Independence accepts all referrals and if they are unable to provide neededservices, they will refer to a more appropriate agency.

°The beet teams of this pmgrem la..the quality and comprehensiveness of the servim, the communitysupport, and the commitment of the Me toward Improving the quality of life for all citizens.°

General Commerts: ProgressiVe independence serves 30,000 people through awareness education.

asts,,\NWRAM,,A,vimsta,v,S, 'N,M,,,\k\m,MMtat.).,MaRtSMILMINET,Su

Oklahoma Independent Living Resource Center Phone: 918426-6220321 South 3rd, Sutte 2 FAX: 918426-6222McAlester, OK 74501 TDD: 918-426-6220

Contact: Don Walker, Community Services Coordinator

Services: Transportation, peer counseling, group sessions, and employment are among theindependent living services offered by the Oklahoma indapendent Ltving Resource Center.

Eligibty: Disability is the only criteria for eligibility.

Referral:

°The best feature of this program Is...our pubik.%. ,..41,1111S identified social/recreation as the prime need.We excel in providing these services.°

General Comments: McAlester, in Pittsburgh County, is located in rural SE Oklahoma The OklahomaIndependent Living Resource Center accepts consumers based on their claim of disability. TheCenter conducts intake interviews with consumers receiving services.

OREGON

Technology Access for Life Needs (TALN)Region I, Blue Mountain Community CollegeBox 100Pendleton, OR 97801

Contact Amy Spiegel, Region ITALN Coordinator

Phone: 503-276-1260FAX: 503-276-6119TDD: 503-276-1260

Se Mces: Assistive technology lending library, assessment, funding demonstrations, regional needsassessment, EDNET (interactive TV), recreation, and assistive technology are among the servicesoffered by TALN.

Assistive technology is unavailable outside of the state of Oregon.

Refenal: TALN offers direct access to their services.

115 1 I )

"The bast feature of thk program is...that It has no eligibility requirements, serves people with anydisability, of any age, and provides ail technologies.'

Swami Comments:

UTAH

Easter Seal Sodety of Utah, Inc.331 South Rio Grand, #206Salt Lake City, UT 84101

Coded: John Pinter, President

Phone: 801-531-0522FAX: 801-531-0575TDD: 801-531-9372

Services: The Easter Seal Society of Utah provides job placement, respite/famity support, assistivetechnology, support groups and legislative advocacy.

Eligibility: Eligibility requirements vary.

Referral:

The best feature of this program is...that our mission allows us to work with a variety of disabilitiesand age groups.*

General Comments:

WASHINGTON

Vocational Rehabilitation Part A - IL ProgramWashington Department of Social and Human Services4101 MeridianBellinuham, WA 98227

.Contact. Joyce Tighe, Independent Living Counselor

Services:

Phone: 206-676-2021FAX:TDD: 206-676-2021

Eligibffity: To be eligible for Vocational Rehabilitation services, the consumer must have a disabilityand no other service provider.

Referral: Referrals for Vocational Rehabilitation's services may come from other agencies, otherconsumers, or the individual.

wThe best feature of this program is...that it serves people that 'fall through the cracks' and tries toovercome barriers to the participant's family and community life.'

General Comments: The agency identifies consumers by outreach to rural areas arid uses an ILassessment tool. 'Rural' is any community outside of Seattle's King County.

116

WISCONSIN

Center for Independent LivingUniversity of WisconsIn-StoutMenomonie, Wi 54751

Contact Sue Hebert, Resource Counselor


Services: Center for independent Living, University of Wisconsin-Stout provides accessibility, peer

advisement, advocacy, technical assistance, and disability awareness.

eigibirsty: The consumer must reside within our eleven-county area, be 16 years old or older and

have a disability to be eligible.

Referral: The referral policy is open; consumers may be referred by a social worker, family, friend, or

themselves.

The best feature of this program is...flexibility, room for creative ideas.'

General Comments: Assessment Is an ongoing process -- open-ended -- as new goals/concerns

arise. Resources can be as unique as the consumer's goals. 'Rural' means lots of `on the road' time

for resource counselors whose budgets must allow for travel expenses. it also reflects the challenge

of consumer involvement -- consumers are not able to come together for center activities and to meet

other consumers.

Easter Seal Society of Wisconsin, Inc. Phone: 715134-0460

Northern OfficeFAX:

115 East Polk AvenueTDD:

Eau Claire, WI 54701

Contact: Joan M. Johnson, Regional Representative

Services: The Easter Seal Society of Wisconsin, Northern Office, provides accessibility assistance,

equipment loan, funding and the Rural Center for Farmers with Disabilities.

Eligibility:

Referral: Referrals to the Easter Seal Society of Wisconshi can be made by the consumer, health

providers, family, or friends.

°The best feature of this program is...all disabilities are included.°

General Commnts:

14 7

WEST VIRGINIA

University Affiliated Center for Developmental DisabesWeet Virginia University918 Chestnut Ridge Road, Suite 2Morgantown, WV 26505

Phone: 304-293-4692FAX: 304-2934294TDD:

Contact Don Kincaid, Deputy Director

Servicee: The Center provides comprehensive services.

Eligibility: The Center has no eligibility requirements or restrictions.

Referral: The Center's referral policy is based on personal contact with consumers.

'The best feature of this program is...the broad range of technical assistance, consuitation, andservices provided throughout West Virginia."

&moral Comments:

N*x

Rural & Farm Family Vocational Rehabilitation ProgramUniversity of Vermont Extension SystemMonill HallBurlington, VT 05405

Phone: 802-656-3013FAX:TOD:

Contact: Daryl Lowry, Program Supervisor

Savias: Physical restoration, assistive technology, vocational evaluation, counseling, financialmanagement, vocational training and placement, and worksite modifications are the servicesprovided.

Eligibity: Eligibility is based on the presence of a physical or mental disability which is a substantialhandicap to employment, and a reasonable expectation that services will benefit the consumer interms of employment.

Referral:

°The best feature of this progran is...lmost of the] staff come from an agricultural background so theyrelate well with the clientele."

General Comments: Our clients mainly come from referral sources or self referred. We use all otherprograms and agencies as they are appropriate. Outcomes are successful rehabilitations. Rural"means living and earning an income in rural settings. Rural also means living in the country in a quietsetting - being away from all the resources and advantages of a town or city.

118

1 L.

RURAL DISABIUTY SERVICES NETWORK WORKSHEET

AGENCY NAME

Mailing Address'

Street Address, if different from above.

Phone:

Contact Person:

enw.ET CITY COUNTY

FAX:

TYPE OF AGENCY (check all that apply):

Title:

STATE

TOD'

Rural Only, Mixed Urban/Rural, Private for Profit, Private Non-profit

No. of Staff

No. of Satellite Offices

NAME(S) OF COUNTY SERVED:

Govemment/Pubiic

People Served/Year Hours of Service/Client

Distance to Farthest Client Center-based

FUNDING Source(s): Federal; State; County; City; Private;

POPULATION Served:

Under 21 - If yes, Infants (0-24 mos.)

Adults (22-64 yrs.) Toddlers (24.36 mos.

Seniors (65 & older) Praschoolers (37 mos.-5 yrs.)

Fee For Service; Other

Youths (6-12 yrs.)

Teens (13-18 yrs.)

Young Adutts (19-21 yrs.)

Disability-related SERVICES PROVIDED'

Service DEUVERY PROCEDURES: Outreach, Case Management, Information/Referral; Advocacy;

Training/Consultation; Technical Assistance _Other, specify'

EUGIBIUTY Requirements and/or Restrictions'

REFERRAL Policy'

Can We Include Your Progran in the pubrtshed Rural Disabity Senrice Network Directory? Yes; No

COMMENTS (How does your program identify/assess clients? What resources do you utilize? Whatkinds of outcomes are you looking for? What does 'rural' mean to your program? Your clients? etc.):

"The best feature of this program is

Information provided by: Date.

12{

APPENDIX

Etiquette of Consumer InvolvementTom Seekins, Fabricio Balcazar, and Stephen B. Fawcett

Research and Training Center on Independent LivingThe University of Kansas

Consumer groups exist to promote a broadset of values in their communities. Among themany values that consumer involvement groupsshare are such principles as fairness, equalaccess, equal oppodunity, independence,community integration, social acceptance, safety,dignity, and consumer control.

Issues involve the application of theseprinciples in everyday situations. For example,a policy change can have positive or negativeeffects on the principle of community integration.The general goals of a group are to supportpositive changes, prevent negative changes, ordevelop new ways of enhancing these principles.But the approach you take can significantlyinfluence the degree of success you achieve.This lesson describes 10 guidelines that haveled others to successful efforts.

Ten Guidelines for Prudent AdvocacyThe type of projects your group chooses will

contribute to its reputation in the community.Since your group is likely to address manyissues over a long time, its reputation is a key tosuccess. The following guidelines have emergedas characteristic of many successful advocacyorganizations. This list is by no meanscomplete, but it may serve as a basis for healthycommunity involvement.

Accentuate the PositiveRespond to at least as many positive events

as negative ones by complimenting positiveactions and honoring key figures. Keepingpositive is easy, and it will win you friends andbuild your reputation as being a reasonablegroup. Constructive involvement can serve asthe basis for many successful projects.

Begin by Assuming the Best of OthersChallenging the motivations of others often

produces needless resistance. Assuming anegative act is the result of Ignorance orinattention (maybe even your own) crsates

opportunities to teach and learn. A correlary isto give credit freely for beneficial decisions.Acknowledging the wisdom and vision of otherswho support you is likely to increase theircommitment to your goals.

Do Your Homework and Document BrerithingIf your group takes a position or initiates an

action based on an error in fact, you stand agood chance of being very embarrassed. Suchembarrassment can damage a hard-wonreputation. A significant error in fact can alsodirect attention away from your issues, no matterhow important they are. Thus, the first step indeveloping a position or a project should alwaysinvolve confirming your information. In addition,you should document everything you do as wellas what others tell you. Documentation protectsyou from denials and counterchargers.

Take the High GroundWhen you take a position on an issue, &Jays

highlight the general values or principles you arepromoting, such as independence, equal access,well be:"Ng. dignity, or safety. The importance ofthese vaiues and principles is hard for anyone todeny. They serve as a firm basis for agreement ongeneral community goals. They help preventpersonality conflicts stemming from disagreementsover details d solutions. And finally, positive valueslend an air ci eloquence to your position that willimpress almost anyone.

Take a Broad PerspectiveAlthough a consumer group is usually too small

to act on every relevant issue, it is wise to spreadyour attention across different issue types overtime. Various issues are likely to share manysimilarifies. A group that focuses only ontransportation issues will have a narrow appeal tomembers and the public. Addressing issues ofaccessibility broadens appeal and generates moreopportunities for involvement. It probably increasesopportunities for success, too.

Pkst Many Small SuccessesGroups are more likely to grow and maintain

themselves over time, V they have manysuccesses. One way to facilitate success andgrowth is to have many small projects ratherthan one major one. Miny successful effortsover time will build the competency andreputation of the group so thel it can takeadvantage of major opportuntties moreeffectively.

Begki With the Simplest Stepit an issue is personally important, members

tend to want to make an immediate, strongresponse. This approach can seriously restrictyour options and those of others who supportyou. Radical actions should usually be saved asoptions until other, less intrusive attemativeshave been tried without success.

Se Prepared to Follow TtroughOnce you have begun to address an issue,

be prepared to follow through. This means youshould be ready to compliment responsiveness,attend meetings, compromise, or, escalate yourapproach, if there is no response. Somesituations may become intolerable, and youshould not seek to avoid conflict at all cost. If

you don't follow through on your current efforts,others will be likely to ignore your future efforts.

Be ReasonableDeveloping a quality community requires

cooperation and compromise between groups

126

with competing Interests. Public support isalmost always on the side ot those who are mostreasonable ki their approach and demands.Action that offends interested pattesespeclailythe publicdecreases the chances forcooperation and success.

Be Prepared to Accept SuccessSuccess might best be viewed as progress

toward an ideal rather than capitulation by theenemy. You should advocate for your ownproposals, but you should also keep an openmind for alternatives and compromises offeredby othrvs. They, too, have legitimate goals andneed some control over their situation. Moreover,their knowledge of the workings of systems youmay not understand might lead to greatersuccess than you imagined. A mutuallyacceptable solution to a problem is a successfor everyone. Your willingness to help others winwill contribute to a strong group reputation.

Reprinted with permission from ConsumerInvolvement in Advocacy Organizations. Vol. I:Monitoring and Reporting Events, Research andTraining Center on Independent Living,University of Kansas. For more information or toorder this publication, contact the Research andTraining Center on Independent Living (RTC/IL),BCR, 4089 Dole, University of Kansas, Lawrence,KS .*:6045, (913) 864-4095 voice/TDD.

1 -)... 4.,

6

NATIONAL INSTITUTE ON DISABILITYAND REHABILITATION RESEARCH

ADA Technical Assistance Grants and Coordination Contract

The National Institute on Disability and Rehabilitation Research (NIDRR), within the U.S.Department of Education, has awarded 15 grants to provide technical assistance to thosewith rights and duties under the Americans with Disabilities Act (ADA). This new 4.55million dollar program establishes: 10 Region& Disability and Business AccommodationCenters; 3 Materials Development Projects; 2 National Training Projects; and 1 nationalcoordination contract.

The Regional Disability and Business Accommodation Centers will be funded for fiveyears and receive approximately $300,000 per year. The Canters will work closely withthe business and disability communities to perform four basic functions: (1) disseminateinformation; (2) provide direct technical assistance; (3) provide referrals for specializedinformation and technical assistance; and (4) train interested and affected parties.

The Materials Development Projects will be funded for two years and receiveapproximately $250,000 per year. The Materials Development Projects will addresstraining and technical assistance needs in the areas of employment, publicaccommodation and accessibility.

The National Training Projects will be funded for three years and receive approximately$250,000 per year. One Training Project will target the Independent Living Centercommunity and the second will address a broader audience of parent and familynetworks.

NIDRR has also awarded a contract to coordinate the activities of all of its technicalassistance grantees. This contract will be funded for three years for approximately$300,000 per year.

For further information contact David Esquith, MES 3424, NIDRR, 330 C Street SW,Washington, DC 20202-2572; telephone (202) 732-5801; TDD (202) 732-5316.

...,.....

STANDARD FEDERAL REGIONS

%..p.1100CMCO

noiles4

RIO MCO

imp

127

BEST COPY MIME, 3

AIL ANt

ADA TECHNICAL ASSISTANCE CENTERS

REGION I - CT ME MA NH RI VTUniversity of Southern MaineMuskie Institute of Public AffairsJennifer Eckel, Director96 Falmouth StreetPortland, ME 04103

REGION VI - AR LA NM OK TXIndependent Living Research UtilizationThe Institute tor Rehabilitation and ResearchLex Frieden, Director2323 South Sheperd Blvd., Suite 1000Houston, TX 77019

(207) 780-4430 (713) 520-0232

(207) 780-4417 FAX ()'13) 520-5785 FAX713) 5520-5136 TDD

REGION II - NJ NY PR NJUnited Cerebial Palsy AssociationRichard Dodds, Director354 South Broad StreetTrenton, NJ 08608(609) 3924004(609) 392-3505 FAX

REGION UI - DE DC MD PA VA WVEndependence Center of Northern VirginiaSharon Mistier, Director2111 Wilson &yd.Arlingi on, VA 22201(703) 525-3268(703) b25-6835 FAX

REGION IV - AL FL GA KY MS NC SC TNUnited Cerebral Palsy AssociationUS National Alliance of BusinessShelley Kaplan, Director1776 Peachtree RoadAtlanta, GA 30309

REGION VII - IA KS NB MOUniversity of Missouri at ColumbiaJim DeJong, Director401 East Locust StreetColumbia, MO 65201(314) 882-3807(314) 882-1727 FAX

REGION VIII - CO MT ND SD UT WYMeeting the Challenge, Inc.Randy W. Dipner, Director3630 Sinton Road, Suite 103Colorado Springs, CO 80907-5072(719) 444-0252(719) 444-0269 FAX

REGION IX - AZ CA HI NV PBBerkeley Planning AssociatesErica Jones, Director440 Grand Avenue, Suite 500Oakland, CA 94610

(404) 888-0022 (415) 465-7884(404) 888-9091 FAX (415) 465-7885 FAX(404) 888-9006 'MD

REGION V - IL IN MI MN OH WIUniversity of Illinois at ChicagoUniversity Affiliated Programin Developmental DisabilitiesDavid Braddock, Director1640 West Roosevelt RoadChicago, IL 60608(312) 413-1647 V/TDD

128

REGION X - AK ID OR WAWashington State Governor's CommitteeToby Olson, Director212 Maple Park KG-11Olympia, WA 98504(206) 438-3168(206) 4384014 FAX(206) 438-3167 TDD

ADA MATERIALS DEVELOPMENT PROJECTS

Ern &runtCornell UniversitySusanne Bruyere, Director120 Day HallIthaca, NY 14853-2801(607) 255-9536

En1PloYmentInternational Association of MachinistsCenter for Administration Rehabilitationand Employment ServicesAngela Tralforos, Director1300 Connecticut Avenue, NW - Suite 912Washington, DC(202) 857-5173(202) 728-2969 FAX

Public Accomodadon/Acceselbay

Bwrier Free Environment% Inc.Ronald L Mace Water, DirectorGarden Highway 70 WestRaleigh, NC 27622(919) 782-7823 VfMD(919) 787-1984

ADA NATIONAL TRAINING PROJECTS

Peer and Family Training NetworkParent Information CenterJudith Raskin, Director151A Manchester StreetConcord, NH 03301(603) 224-7005 WTDD(603) 224-4365 FAX

Local Capacity-Building for Independent LivingNational Council on independent LivingAnne Marie Hughey, Director3607 Chapel RoadNewtown Square, PA 19073(215) 353-0678(215) 353-6753 FAX(215) 353-6083 TDD

NATIONAL ADA TECHNICAL ASSISTANCEGRANTS COORDINATOR

Abt Associates, Inc.Raymond Glazier, Director55 Wheeler StreetCambridge, MA 02138-1168(617) 492-7100(617) 492-5219 FAX

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Transcript of y*****************A*W********W*office space. Fun Jing has increased tenfold:...

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Transcript of y*******************A*****W******************W*********office space. Fun Jing has increased tenfold:...

y*****************A*W********W*office space. Fun Jing has increased tenfold:...

Transcript of y*****************A*W********W*office space. Fun Jing has increased tenfold:...