TABLE OF CONTENTS

A NEW WAY OF THINKING–2A NEW PERSPECTIVE

ON POLICY–6A NEW WAY OF LEARNING–1 OA NEW WAY OF LIVING–22A NEW WAY OF WORKING–31SUPPORTING A NEW

VISION–40

January,1987

Preeented byState of Minnesota, State Planning AgencyThe Governor’s Planning Council onDevelopmental DisabilitiesElaine Saline, ChairColleen Wieck, Ph.D., Executive Director

Members of the Governor’s PlanningCouncil on Developmental DisabilitiesRichard S. Amado, Ph.D. Gerald NelsonMarcel A. Bourgeault Bill NiederlohDouglas Butler Dorothy Peters, Ed.D.Robert DeBoer Barbara PihlgrenRoger A. Deneen Ruth RaftesethSuzanne M. Dotson Janet M. RubensteinSandra J. Fink, Ph.D. Glenn SamuelsonVirginia Hanel Sharon ShapiroAnne L. Henry Ed Skarnulis, Ph.D.Paula H. Johnson Karen TitrudHelmi Lammi Larry Wefring

Margaret Lindstrom

With Preparation byThe University of MinnesotaCollege of EducationCenter for Educational Policy StudiesCharles H. Sederberg, Ph.D., Director

Project Directors: Project Editor:Jeanne L. Campbell, Ph.D Bruce KappelDorothyJ Skarnulis

Chris,16 yearsold,livesat BrownHouse,CoonRapids.

1

A NEW WAY OFd’ /

Over the past several years, wehave learned about people withdevelopmental disabilities, whatthey are capable of doing, what isimportant in their lives, and howthey can be supported in commu-nities. From what we have learned,we are changing our way of think-ing and our way of acting. A parentand leading professional in thefield, Toni Lippert has observed thefollowing changes in Minnesota:

A shift from expanding systemcapacity to increasing servicequality.

A move from fixed and predeter-mined expectations of personswith severe disabilities to higherand more demanding expecta-tions by the individuals them-selves, their families, andservice providers.

A move from short-term, devel-opmental planning to life-long,functional planning.

A move from providing a servicecontinuum with emphasis on“special facilities and programs”to seeking a service array thatadapts generic resources byproviding the assistance andsupport as needed.

A move from a fragmentedgrouping of separate and inde-pendent services (residential,day training, education) torecognition of the need for aholistic, interdependent and in-tegrated service system.

A move from a system of offeringmodels of service delivery to onewhere it is possible to create in-dividualized support.

A move from service paymentbased on facility budgets towardreimbursement based on vendorperformance and individualneeds (Toni Lippert, personalcommunication, 1986).

Dan,16 yearsold,receivingnourishment.

based on e knew, it has nowbecome clear that funding willhave to be reorganized to supportmeaningful change,

Regulations governing use offederal funds (Medicaid) often de-termine both the shape of publicpolicy and the type of services pro-vided. We have been very creativeand effective in using funding andpolicy opportunities to provide ser-vices, Much has changed, but notenough, We need to use what wehave learned to shape the systemso we can move beyond a focus onmaximizing federal funding to oneof building opportunities for peoplewith developmental disabilities.

Who Are the Peoplewith Developmental

Disabilities?

One way of thinking about peo-ple with developmental disabilitiesis linked to definitions and num-bers. Historically, services wereprovided to those Minnesotanswho were diagnosed as “mentallyretarded. ” In 1985, however, theLegislature recognized people with“other related conditions” andmade them eligible for services(MS. 252-27, Subd.1).

The official definition of “devel-opmental disabilities” is containedin the Developmental DisabilitiesAct of 1984, The federal definitionis based on the nature of the im-pairment (mental and/or physical),the age of onset and the long termnature of the disability, the sub-stantial effect on the individual’sability to function in several majorareas of life activity, and the de-gree to which the person needs on-going services. People withdevelopmental disabilities are con-sidered to be those people with themost severe disabilities. A com-monly asked question is how manypeople with developmental disabil-ities are there in Minnesota? Whilethere is no definitive answer, the

A developmental disability is a severe, chronic disability which:●

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Is attributable to a mental or physical impairment or a combination ofmental and physical impairments;Is manifested before the person attains age twenty-two;Is likely to continue indefinitely;Results in substantial functional limitations in three or more of the follow-ing areas of major life activity: self-care, receptive and expressive lan-guage, learning, mobility, self-direction, capacity for independent livingand economic self sufficiency;

andReflects the person’s need for a combination and sequence of specialinterdisciplinary or generic care, treatment or other services which areof lifelong or extended duration and are individually planned and coordi-nated.

SourceTheDeve/omnentaiDisaiM/esAc/of 1984 (P.L.98-527,Seclion102).

Governor’s Planning Council onDevelopmental Disabilities hasused three prevalence rates to esti-mate an answer, Based on the esti-mated 1985 Minnesota populationof 4,193,000 the following figureswere obtained:

People WithPrevalence Developmental

Rate Disabilities

The New Way of ThinkingStarts From a Different

Persr3ective

People with developmental dis-abilities are, first and foremost,people with ability. Without specialassistance some people with de-velopmental disabilities cannottake advantage of the freedomsand opportunities of our society,They are, however, fundamentallymore like the rest of the populationthan they are different from it,

People with developmentaldisabilities have special needs, buttheir basic needs are the same.Funding, policies and servicesoften have been focused on/y atthe specia/ needs of people withdevelopmental disabilities. Theresult has been that their basicneeds have gone unmet.

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We have learned that servicesare most successful when basicneeds are met in the context of ad-dressing special needs. Peoplewith developmental disabilities, likeall people, need:

To be seen, first of all, as people.To experience love and friend-ship.To experience continuity in theirlives, especially in relation to thepeople who are important tothem.To be respected and treatedwith dignity.To have access to opportunitiesand information, to makechoices and to exercise theirrights.To learn those skills which areneeded to participate, as muchas possible, as valued membersof their community.To have a decent and appropri-ate place to live.To have meaningful employmentand contribute to the community.To have opportunities to con-tinue to learn throughout theirlives.

In response to these basicneeds, our hopes for the future andour thoughts about the quality ofour lives are often concerned withthree basic issues—HAVING AHOME, not just a roof over ourheads; LEARNING skills which areuseful to our lives and careers, notjust going to school; and WORK-ING, not just keeping busy. Thereis a fourth basic issue which givesvitality andfullnessto our lives-DEVELOPINGAND SUSTAININGRELATIONSHIPSwith people whodepend on us and upon whom wecan depend.

A real home is a place to live themost personal moments of ourlives. A home provides securityand comfort, allows us to makechoices and express ourselves.The people who share our homesare usually the people with whomwe choose to spend time, beourselves and feel close.

Real learning is lifelong. It meanslearning to understand ourselves.Learning involves developing skillswhich are useful to us both as indi-viduals and as members of com-munities. The people with whomwe learn are also teachers. Manybecome friends we can count onthroughout our lives.

Realwork means earning a liv-ing, being productive and makinga contribution to our community.The relationships we develop withthe people with whom we work areimportant to us.

Having a home, learning andworking—each involves us asmembers of a community who bothreceive the support of others andmake contributions to the commu-nity. Each involves us in the contin-uing process of individual growthand expression. Each involves usin developing relationships.

Having a real friend means be-ing involved with someone whochooses to spend time with youjust because they want to and notbecause they are paid to do so.Real friends broaden our opportu-nities and enrich our lives. Realfriendsare hard to find, It takesmost of us a long time through con-tact with many different people tofind that small group of friends whoreally matter. Opportunities thatlead to friendships are essential.

People with developmental dis-abilities often are more handi-capped by the environment thanby their disabilities. Historically, ourthinking and actions have focusedon the in abilities of people with de-velopmental disabilities. The con-cern was with “fixing the person” or“curing the deficit. ” Over time thatfocus has shifted to building oncap abilities and assisting individu-als to develop and use their abili-ties.

The most dramatic shift in ourway of thinking is the recognitionthat the social and physical envi-ronments are often a greater issuethan abilities and disabilities. Thisis especially true in considering theexpectations others have of peoplewith developmental disabilities,and what people do based onthose expectations.

4

is 42 years old.

t of her life. Shirley has severespasticity in all%’he&#nbs. She was considered unable to communicateuntil she met the bioengineering team from the Association for RetardedCitizens—United States (ARC-US). Now with a computer, Shirley forthe first time in her life is able to activate parts of her environment withsounds. By uttering the following sounds she creates enjoyable activitiesfor herself:

“Four” —stories read on a videotape.“Bee” —three different sequences of her family presented on

videotape.“Move”- a massage pad is activated.“Ray” —a radio is turned on so she can enjoy her favorite music.“off” —she can turn all activities off.

The sense of accomplishment and enjoyment Shirley is experiencingthrough this technology is clear from her joyful facial expressions. Soonshe will be moving out of the institution and into a small residence in thecommunity. Her home will be designed so Shirley can control her environ-ment. Shirley’s story is available on a videotape, “New Horizons,” fromARC-US (Cavalier and Brown, 1986).

We have made great advancesin bringing very sophisticated tech-nology to bear on the lives of peo-ple with disabilities, People whohave trouble speaking were oftenunable to interact with others be-cause of the low level of technol-ogy put at their disposal. Peoplewho had trouble moving theirhands simply could not use signlanguage to their advantage, In avery short period of time, we havemoved from manual spellingboards to laptop computers to syn-thesized speech to gaze activatedcomputers.

The new way of thinking aboutdevelopmentaldisabilitiesempha-sizes supporting individuals,families, and communities, Thissupport has several dimensions:● Basing the provision of services

on the informed choices,strengths and needs of individu-als with developmental disabili-tiesand their families, ratherthan forcing them to chooseamong a narrow range of pre-setoptions and approaches.

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Planning and providing servicesbased on what people need andthe abilities they have, ratherthan providing more servicesthan are needed, or not provid-ing those services which areneeded.Supporting the individual, familyand community members to gainaccess to the resources avail-able in the community—jobs,houses, relationships withfamilies, friends and associates—rather than replacing those re-sources with places populatedonly by professionals and otherpeople with disabilities.Coordinatingservicesandsup-ports around the life of the indi-vidual rather than around theneeds of staff and services.Recognizing the abilities of ordi-nary citizens—children, co-workers, neighbors—to teachpeople skills, assist them to par-ticipate and contribute, modelappropriate behaviors, and de-velop relationships,

We have learned that all of theseadvances are possible. We havelearned that when they are accom-plished the quality of life experi-enced by all citizens is improved.

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A NEW PERSPECTIVE ON

An overview of the history ofchanges in services to people withdevelopmental disabilities pro-vides a context for considering anemerging policy perspective. Inthe 1800s thinking about develop-mental disabilities was marked bythe concept of benevolent shelter.The eugenics movement in theUnited States during the early1900s contributed to thinkingof people with developmentaldisabilities as “defective” and“deviants” who should be sepa-rated from community life(Wolfensberger, 1975), Thinkingabout developmental disabilities inthese terms resulted in a central-ized approach under which all resi-dential, educational, workopportunity and other serviceswere provided by institutions. InMinnesota and all other states,large state hospitals were con-structed to deliver publicly sup-ported services to people withdevelopmental disabilities.

Beginning in the 1950s, expand-ing knowledge about the causes ofdevelopmental disabilities, newtraining/treatment programs, thecivil rights movement and otherfactors began to change the think-ing about developmental disabili-ties. The change in thinking aboutdevelopmental disabilities wascharacterizedby suchthemesasright to treatment, least restrictiveenvironment, due process and hu-man dignity. The policy responseto this way of thinking called for“deinstitutionalization” and provi-sion of community residential, edu-cational and vocational services.

In Minnesota the shift toward acommunity orientation of servicesresulted in the construction of inter-mediate Care Facilities for Peoplewith Mental Retardation (lCFs/MR),mandated special educationclasses in public schools and cre-ated developmental achievement

centers (DACS),work activit~cen-ters (WACS)and other communityagencies to provide day programs.Community services have suc-ceeded in placing people with de-velopmental disabilities in localcommunities, but have had lesssuccess integrating them into com-munity life.

The new way of thinking aboutindividuals focuses on outcomes:living in real homes, learning inregular schools and working in realjobs, These outcomes are to beachieved through support servicesprovided on an individual basis.Implementation of policies derivedfrom the individual approach toservices has resulted in a new setof residential, educational and em-ployment alternatives, Individualresidential supports in Minnesotainclude the Family Subsidy Pro-gram, the Home and CommunityBased Waiver, Foster Care, Semi-Independent Living Services(SILS)and other arrangements. in-dividualized Education Programs(IEPs) and other provisions in theEducation for All HandicappedChildren Act (P.L. 94-142) charac-terize the implementation of thisapproach within the educationalsphere. Work opportunities whichhave resulted from the individualapproach to services include sup-portedemployment,transitionalemployment and competitiveemployment.

Each of the policy approaches—institutional, community orientedand individualized—has resulted indistinctive types of facilities, ser-vices and supports. The followingmilestones mark changes from aninstitutional to community to an in-dividualized approach to servicedelivery during the past 30 years.

Thirty-fiveyears ago parents re-volted and protested the neglectand exclusion of their children withmenta/retardation. Themost signif-icant progress since that time hasbeen the emergence of individualswith mental retardation as personsin their own right, as fellow humanbeings claiming their place in oursociety (Dybwad, 1985).

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*

A NEW WAY OF

In our society, learning is a val-ued activity, important to the devel-opment of individuals. Growth,learning and belonging are impor-tant to all children, but especially tochildren with developmental dis-abilities. If these children are toparticipate and contribute to theircommunities, it is essential thattheir education be efficient and ef-fective. Many children with devel-opmental disabilities have difficultylearning. It is critical that we de-velop strategies and approachesto prepare children for life and en-hance their individual capabilities.

Historically, the changes in ourthinking about education have par-alleled, and in some cases deter-mined, our thinking about otherareas of life. When the institutionalapproach prevailed, young peoplewith developmental disabilities didnot attend public schools; theystayed at home, were admitted tostate institutions, or attended spe-cial, private schools. A shift fromthis prevailing practice took placein Minnesota in 1957 with the pas-sage of the Special Education forHandicapped Children law (MS.120,17). The law required allschool districts to provide specialeducation services to childrenwhose IQs were above 50. Theprovision of services was made op-tional to children with more severeor untestable levels of disability. Inresponse to the resulting lack ofeducational opportunities for chil-dren with severe disabilities, De-velopmental Achievement Centers(DACS)began providing educa-tional services to these children(and to adults) on a pilot basis in1961, and on a permanent basis in1963,

In 1971, public scho~cialeducation services were mandatedin Minnesota for all children withdisabilities. As a result of thisamendment to Minnesota’s specialeducation statute, most special ed-ucation services were offered inseparate classes in regularschools or in special schools withinlocal districts during the early1970s.

Federal legislation (P.L. 94-142),passed in 1975, shifted emphasisin Minnesota from one of gettingchildren with disabilities intoschools to an emphasis on the na-ture of the education they receive.Federal education policy sup-ported the concept of individual-ized, outcome-oriented learningexperiences for all children withdisabilities. Minnesota’s educa-tional services to children with dis-abilities reveals both changes inthe way we do things and emerg-ing needs and issues. The follow-ing sections summarize currenteducational services frompreschool to adult vocationalprograms.

The Education for All Handi-capped Children Act (P.L. 94-142)requires each state to provide edu-cational services consistent withthe following major guidelines:

FREE AND APPROPRIATE ED-UCATION: Public schools mustidentify all students with disabili-ties within their geographicareas and provide free instruc-tional and support services tomeet each student’s unique edu-cational needs.INDIVIDUALIZED: Publicschools must recognize thateach learner is unique and has aright to an education which istailored to individual strengthsand needs.INTEGRATED SEITING: To themaximum extent appropriate,children with disabilities are tobe educated with children whoare not disabled. Specialclasses are to occur only whenthe nature or severity of the dis-ability is such that education inregular classes with the use ofsupplementary aids and ser-vices cannot be achieved satis-factorily.DUE PROCESS: Parents orguardians must be provided withprior written notice of actionswhich might affect the status oftheir child. If disagreements can-not be resolved through concilia-tion conferences, a due processhearing must be conducted withboth sides represented beforeanimpartialhearingofficer.

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Cory,left, and Danare in theSpecialFriendsprogramat CapitolViewSchoolin Roseville.

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Thero/e of the fami/y is not an edu-cational extension of the interven- Early Childhood—tion program. Rather, the opposite Birth Through Age Fiveis true, the intervention programshould bean extension of the fam- Early childhood is a time wheni/y....(Wright, Granger, andSameroff, 1984).

growth, learning and belonging arecritical issues. The stimulation andlearning that take place in the firsttwo years of life are critical to childgrowth and development. The ab-sence of stimulation and learningduring this period has lifelong con-sequences. It is also the time whenfamilies develop the basis for theirongoing relationships and childrenlearn about play and friendship.The quality of infant care and stim-ulation depends on the knowledgeand skills of parents, guardiansand others caring for the child.

In Minnesota, four public agen-cies are involved in providing earlyintervention and early childhoodfamily education programs. TheDepartment of Health providesServices for Children with Handi-caps, Maternal and Child Health,Early and Periodic Screening,Community Health Services andPublic Health Nursing Services.The Department of Human Ser-vices provides Early and PeriodicScreening, Diagnosis and Treat-ment; Developmental AchievementCenters; day care and nursery pro-grams; and case management.The Department of Jobs and Train-ing supports Head Start programs.The Department of Education of-fers Preschool Screening, EarlyChildhood Special Education,Early ChildhoodFamilyEducation,and Community Education. To en-sure that the early intervention andeducation services provided bythese state agencies are coordi-nated, the 1985 Legislature re-quired all school districts toprovide leadership in InteragencyEarly Learning Committees.

The Early Childhood Special Ed-ucation services of the Departmentof Education are most directlylinked to the integration of servicesfor children prior to their entry intoregular school programs. In 1967,Minnesota passed permissive leg-islation allowing school districts toserve preschool children with dis-abilities and receive full state aid.The importance of preschool edu-cation was further recognized inMinnesota in 1985 (M.S, 120.17)and by Congress in 1986 (P.L. 99-457) by mandating education forall children with disabilities fromage 3 to 21. The legislative agen-das of advocacy groups in Minne-sota continue to place a highpriority on achieving mandatedservices and education for childrenfrom birth.

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Preschool programs are deliv-ered directly by school districts orindirectly through contracts withother districts or agencies such asDevelopmental Achievement Cen-ters. The services may be providedin the home, in a center or throughconsultative arrangements. Thecommon theme of early special ed-ucation programs stresses parentsor principal caregivers as thechild’s primary teacher.

Table 1 depicts the extent of par-ticipation in preschool special edu-cation programs in Minnesota. Intotal, 8,660 children from birththrough age five received suchservices in 1985. They represent10.6 precent of all children receiv-ing special education services dur-ing that year. Just over one half (52percent) of Minnesota school dis-tricts opted under permissive legis-lation to provide servicesto514children from birth to two years ofage during 1985. The MinnesotaState Department of Education es-timates there are approximately1,500 children in this age groupwho are eligible for services, butare not currently receiving publicschool services.

The total cost of preschool spe- V14ththe advent of P.L. 94-142cial education services in 1985 there is a great need for parents towas $15,069,000. Local sources know how to use the empower-provided 26 percent of the funds, ment they have under this legisla-state sources provided 60 percent tion (Betty Pendler, parent).and 14 percent came from the fed-eral government. Cost-benefitstudies demonstrate this is a wiseuse of resources. For each dollarinvested in preschool education, asavings of $4.75 is achieved inlower special education costs, re-duced welfare payments, andhigher worker productivity(Weikart, 1983).

Number of Preschool Age Children withSpecial Needs Served in Minneaota Pub-lic School Special Education Programsand Under Contrscts with Other Agen-cies, 1985.

Table 1

Age Children Served Percent

Source:MinnesotaDepartmentofEducation,1985.

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Students Served (sges 6-21), Expenditures end Stste sndFederalAids Paid by Special Educstion Progrsm AresIn Minnesote During Fiscel Yesr 1983-64

Table2

Students Served Total Expenditures State and Federal(undupllcated count) (thousanda) Aids Paid (thousands)

Program Area Number Percent Amount Percent Amount Percent

?

. ..

Source: MinnesotaDepartmentofEducation,1985

Thechallenge today is to take whatwe have learned from the specialprograms and begin to transfer thisknowiedge to the regular class-room (Will, 1986).

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The School Years—Kinder~;$:::w’ough

In fiscal year 1984, over 699,000students were enrolled in Minne-sota public schools. Special edu-cation services were provided to10,3 percent of these students (ex-cluding children under the age ofsix years). Table 2 summarizes theextent of services, total expendi-tures, and state and federal aid inMinnesota for 1984. The specialeducation categorical aids during1984were $140,676,000 from stateand federal sources. The largestgroup of students defined by a di-agnostic category for receivingspecial education services was“special learning disabilities”(SLD) representing 45 percent ofthe students and 32 percent of theexpenditures.

Most of the students receivingspecial education services in thepublic schools are not develop-mentally disabled according to thefederal definition. Students likely tomeet the definition of developmen-tal disabilities are those diagnosedas “trainable mentally handi-capped” (including moderate,severe and profound mental retar-dation), physically handicapped,emotionally disturbed, deaf andblind and autistic.

The emphasis of both policy andlegislation is on integration of stu-dents with disabilities into regularclassroom settings and localschools. Minnesota students withsevere disabilities, however, for themost part were served in separateclassrooms and buildings during1985 (see Figure 1).

Numbers of Students with Moderate andSevere Mental Retardation and Their Ed-ucational Settings on Deoember 1,1979,December 1,1983, snd December 1,1985.

Figure1

1979

Fifty-one percent of parents sur-veyed in a recent transition studyreported that IEP goals and objec-tives related to the post schoo/needs of their sorddaughter werenot being discussed with them(University of Minnesota, 1986).

1%(38)1% (32) RegularClass

OtherEducationalSetting

Source: MinnesotaDepartmentofEducation,1985.

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/?esu/tsof a recent study on transi-tion point out several concernsregarding the post school experi-ences of youth with disabilities,Ninepercent of former studentswith moderate or severe handi-caps have fu//-time paid employ-ment; another 32 percent havepart-time employment (Universityof Minnesota, 1986).

Special VocationalTraining—SecondaryStudents and Adults

In addition to the primary con-cern of integration, a second areaof concern is preparing studentswith developmental disabilities forthe adult world. The term transitiondescribes the change from sec-ondary education to post sec-ondary education or employmentand community living. In recogni-tion of this change, the MinnesotaLegislature established an Officeof Transition which is responsiblefor data collection, coordinationand providing information, consul-tation and technical assistance tostate and local agencies involvedin transition services. In addition toproviding workshops on transition,a state interagency agreement tocooperate in providing transitionservices was established. Thereare nine agencies involved in plan-ning for the approximately 4,000students with disabilities who leaveschool annually (Minnesota De-partment of Education, 1986).

Vocational education and train-ing are part of the transition proc-ess which prepare secondary andpost-secondary students for pro-ductive activity following school.Public school districts are requiredto make available 560 hours of vo-cationally oriented instruction intwo or more curriculum areas toall secondary students—includingstudents with disabilities. Localdistricts may provide these ser-vices or arrange them through co-operatives. In 1985, there were 35joint power vocational training cen-ters providing vocational trainingfor students beginning in the tenthgrade. During that year the totalsecondary vocational program ex-penditures for students with spe-cial needs were $6,080,000.

Very few of the 9,000 (duplicatedcount) students with special needsinvolved in these programs wouldmeet the federal definition of devel-opmental disabilities. Instead,these students would be consid-ered to have mild or moderate dis-abilities. In 1985, these specialvocational students received ser-vices integrated with regular stu-dents. Resources were used to hirework experience coordinators,support service managers andparaprofessional aides.

Public post-secondary voca-tional education is provided in AreaVocational Technical Institutes(AVTIS)operated under the juris-diction of the State Board for Voca-tional Technical Education. AVTIShave 40 specially designed, com-munity-based programs offeringvocational or occupational skillstraining for students with disabili-ties. The programs are similar tothose provided in regular sec-ondary vocational education, butthere are more training oppofluni-ties. Again, participating studentswould not meet the federal defini-tion of developmental disabilities.

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A new approach to vocationaleducation ’which does includeyoung people who meet the defini-tion of developmental disabilitieswas developed in 1986 through acooperative agreement sponsoredby the Metropolitan Council’s De-velopmental Disabilities Program.The Governor’s Planning Councilon Developmental Disabilities pro-vided a grant to the MetropolitanCouncil for the development of aCommunity Employment TrainingProgram for adults with develop-mental disabilities, As a result, apilot interagency agreement be-tween several public and privateagencies was established. The co-ordinated effort involved a traininginstitution (the Northeast MetroTechnical Institute); a coordinatingagency (the Metropolitan Council);a planning and funding agency(the Division of Rehabilitation Ser-vices); two agencies providingtraining and supervision (CerebralPalsyWork Activity Center nowcalled Access Ability and MidwayTraining Services, Inc.); and anemployer (Consul Corporation andtwo of its Chi Chi’s MexicanRestaurants),Through this agree-ment, 359 hours of on-the-job train-ing were provided to 16 individualswith severe disabilities from the de-velopmental achievement center.As of June, 1986,8 of the 16 peo-ple were permanently employed,and 8 individuals were waiting forjob openings at the two restaurantsor elsewhere. The approach is be-ing replicated in Willmar and PineCity.

Components of aFunctional Curriculum

There is considerable knowl-edge about what is required toplan, implement and evaluate anindividualized and functionally ori-ented education for students withdisabilities. This new way of think-ing about learning and belongingis well articulated. The following ex-amples identify some of the com-ponents of a quality educationbased in part on criteria describedbyDonnellan(1986).

● Thecontent,style,people,ob-jectivesandplacesofeduca-tionmustbeageappropriateandindividualized,Studentswith developmental disabilitiesoften cannot learn all of the skillswhich can be learned by non-handicapped people of thesame age. At the same time, it isinappropriate to offer programswhich are geared to significantlyyounger students. The goal is tominimize the differences in per-formance of people with d-evel-opmental disabilities and theirpeers. Instructional materials,peer interactions, learning ob-jectives and service locations allmust be chronologically age ap-propriate, Young adults do notplay with wooden puzzles orsing nursery rhymes,

Age-Inappropriate Materiala for YoungAdults Identified During a Site Visit:

. Kitty Puppy Puzzle

. Fat Albert Puzzle● Candyland—A Child’s First Toy. Ring Toss(LufherGranquist,Attorney,Lega/AdvocacyforDeve/opmenta//yDkab/edPersons)

Thefirst generation of studentsserved by P.L. 94-742 are nowgraduating and their parents havehigher expectations than ear/iergenerations of parents. It is unlikelythat parents and caregivers whohave invested heavily in children’sservices will be satisfied with anadt.dtservice system that can on/yproduce a 20 percent employmentlevel or a service system in which80 percent of the recipients will beliving below the poverty line oneyear after separation from highschool (Fifield and Smith, 1985).

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Parents and professionals fe/t ●

strongly that it was very importantto prepare students for future adultlife activities such as employment,community living, and citizenship.Overall, however, these groups fe/tthat schools were doing only mod-erately well in these areas (Univer-sityof Minnesota, 1986).

●

Thegoals,objectivesandac-tivitiesofeducationmustbefunctional.People with devel-opmental disabilities need tolearn things that are truly usefulto them. The functional aspectsof skills related to working, for in-stance, can be assessed by ask-ing, “Would someone be paid todo this?”People do not get paidto stack rings or match colors,As an example, students couldbe taught to sort knives, forksand spoons instead of learningto sort colored tiles,

Interactionswithnonhandi-cappedpeersandothers,areessential.The Education for AllHandicapped Children Act (P,L,94-142) requires that studentsbe educated with nonhandi-capped students to the “maxi-mum extent appropriate, ” It isnot only appropriate, but essen-tial to ensure that people withdevelopmental disabilities havea wide variety of opportunities tointeract with peers and otherswho are not disabled. Educationshould involve a variety of suchopportunities at school andaway from school. The moreconstructive, comprehensiveand long lasting the interactionsthe better—the development ofmutual respect and interesttakes time.

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A varietyof peopleandin-structionalarrangementsneedto beinvolved.People with de-velopmental disabilities need tolearn how to interact with peopleother than teachers and how touse skills in a variety of settings,This means that activities shouldbe designed to enable interac-tion with a wide variety of peo-ple. Programs which facilitatelearning functional skills in a vari-ety of environments are more ap-propriate than programs whichconfine learning to single envi-ronments. People learn skillsbest in the natural places wherethey happen. For example, bed-making should be taught in thehome and grooming should betaught in the locker room or adressing room, not a classroom,

Highlyindividualizedadapta-tionsmustbemade.Many stu-dents with developmentaldisabilities will not be able toparticipate in a variety of situa-tions and environments unlessspecialized and individualizedadaptations are made, Theseadaptations include alternateways of communicating, chang-ing the order in which things areaccomplished and modifying thesetting, A person learning toread who is unable to turn thepages should be provided with apage turning device.

Preparingforthefutureiscriti-cal.Parents and educators needto focus on how and where thestudent will function as an adultand gear learning activitiestoward the actual work and livingarrangementthepersonwill ex-perience.Studentswithdisabili-tieswhowill liveon their ownmust learn cooking, shoppingand other skills leading to self-reliance.

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My body makes me disabled;society makes me handicapped(Anonymous).

Fifty-two percent of the parents in arecent transition study communi-cated that they were not familiarwith the types of community ser-vices avai/ab/e for their son/daugh-ter following graduation fromschool. There was no clear con-sensus on whether the school, theservice agencies or both should beresponsible for collecting andsharing this information (Universityof Minnesota, 1986).

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A staff person from an advocacyorganization asked 20 children in aspecial education classroom,“What do you want to do when yougrow up?” Noneof the childrencou/d answer the question. Theyhad no idea what it meant to be aproductive member of society.

New Directions inSpecial Education

Federal and state policies andfunding have bolstered signifi-cantly the presence of studentswith developmental disabilities inMinnesota’s school systems. Thereis little information, however, to in-dicate whether these students arereceiving an education which pre-pares them for life. A recent moni-toring report by the federal Officeof Special Education Programs,however, indicated that in Minne-sota the effort to provide specialeducation in our schools has re-sulted in decreasedintegration ofstudents with developmental dis-abilities (U.S. Department of Edu-cation, 1985). The fact is thatmany administrative and fundingarrangements have resulted inseparate schools and classes. Thiscreates segregation, notintegration.

More attention is needed in theareas of integration,the imple-mentation of a functionalcurricu-lumand transitionservicesfromschool to adult life. Taxing authorityand categorical aids that serve asdisincentives to integration in regu-lar schools and classes need to bechanged. The policy of “least re-strictive environment” calls for thepresence and participation of stu-dents with developmental disabili-ties with other students. Isolatingeither group denies opportunitiesto learn from one another, to ob-serve role models and to cultivate abroader range of social relation-ships and attachments.

Many students with developmentaldisabilities have trouble learningsome skills and then generalizingwhat they learn to other settings.For some, there may be things theywill never be able to learn, butthere are ways of adapting the en-vironment to compensate for a lackof knowledge or a particular skill.For these reasons, it is critical thatthe curriculum provided for stu-dents with developmental disabili-ties be functional and relate to areal community.

Traditionally, the curriculum hasbeen patterned on academic ob-jectives for all students with low-ered expectations and increasedtime allocations for students withdevelopmental disabilities. Empha-sis has been placed on learningbasic reading, writing and arith-metic skills. The functional ap-proach, on the other hand,determines which skills and whatknowledge would make the stu-dent more able to function in thecommunity (at home, at work, atleisure and participating in thecommunity), then teaching thoseskills in the settings where theywould be used. A clear example ofthis can be found in vocationalskills which are most effectivelytaught in real places of work. Withthis approach, attention is paid tothe skills a student is likely to learn.When it is unlikely that a skill will belearned as taught, adaptations(technological aids, procedures,personal assistance) are providedin the environment so the individualcan achieve the function.

This approach does not assumethat students with developmentaldisabilities cannot or should notlearn to read, write or do arithmetic.It does, however, assume thatthese skills are not necessarily es-sential for living, working and par-ticipating in the community. Giventhe relatively short period of timespent by a student in school, it isimportant to focus on skills, rela-tionships and knowledge that willbe most useful, and to learn aboutthe ways environments can beadapted to compensate for skillsand knowledge students are notable to acquire.

,

20

A NEW WAY OF

In Minnesota, there is a growingrecognition that having a real homeis as important to people with de-velopmental disabilities as it is foreveryone else. For children, homemeans parents or guardians whobuild an atmosphere of love, affec-tion, security, and comfort. For allof us, home means moral and ma-terial security and a place to invitefriends.

The gradual recognition that realhomes are important to people withdevelopmental disabilities has ledto significant policy shifts in resi-dentialservices in Minnesota:●

●

Efforts to reduce the numbers ofpeople with developmental dis-abilities in regional centers andother large facilities, and toincrease the resources availablefor community options.

Efforts to increase the supportavailable to individuals andfamilies so people with develop-mental disabilities can maintaintheir homes in the community.

Returning ‘PeopletoCommunities

The trend toward reinstitutional-ization began in the 1960s. Prior tothat time, the prevailing practicewas to admit both children andadults with developmental disabili-ties to regional centers on an indef-inite basis. Over the last fifteenyears efforts have focused on pre-venting out-of-home placementand moving children from regionalcenters to less restrictive settings.The average age of first admissionto institutions in the United Stateshas risen from 10.4 years in the1960s to 21 years in 1985, Be-tween 1977 and 1982, there were30,000 fewer children (birth-21years) in out-of-home placements.

The Education for All Handi-capped Children Act (P.L. 94-142)has had a dramatic effect on re-ducing the number of children withdevelopmental disabilities in out-of-home placements. P.L. 94-142guaranteed the right of all childrenwith disabilities to receive an edu-cation. It also enabled families tobe relieved of responsibilities dur-ing the day, thus assisting them tobetter support their children athome, As of November, 1986,there were 28 children with devel-opmental disabilities in the regionalcenters in Minnesota.

In 1960, there were 6,008 Min-nesotans with developmental dis-abilities in regional centers, thelargest number in Minnesota his-tory (Minnesota State PlanningAgency, 1985). In 1986, there wasan average daily population of1,868 people with developmentaldisabilities in the state’s seven re-gional centers in Fergus Falls,Brainerd, Moose Lake, Cambridge,kVillmar,St. Peter, and Faribault,

According to Braddock et al.(1986), the number of residents inregional centers has declined be-tween 1977 and 1986 from an aver-age daily population of 3,085 to1,868. During the same time pe-riod, the actual operating costshave increased from $51,405,000to $96,558,000. When adjusted forinflation, expenditures have re-mained about the same during this39 percent decline in number ofresidents. The costs per day perresident have risen from $45,65 in1977 to $158.20 in 1986,

Suzanne,left and Pamnowlive in asemi-independentlivingapartment

together,Theybothpreviouslylived22 in institutionalsituations.

The Development ofAlternatives to

Regional Centers

In order to reduce the number ofpeople residing in regional centersand to prevent their admission, al-ternative residential services havebeen developed in Minnesota.Most of these alternatives have in-volved the use of federal Medicaiddollars for community ICF/MRfacil-ities or Medicaid funding which hasbeen “waivered” and redirected tomore individual and family options.Some of the new alternatives havebeen supported by state and localfunding, such as Family Subsidyand Semi-Independent LivingServices.

Two major forces have con-tributed to the shift from an insti-tutional approach regardingresidential care to a communityapproach:

●

●

The We/schCase: The originalcourt order established the rightto treatment and placement inthe least restrictive environment.The 1980 We/sch Consent De-cree mandated a reduction inthe number of people with men-tal retardation in regional centersfrom 2,650 to 1,850 over the pe-riod from 1980-1987.

Title XIX Medicaid funds (1971)to stimulate the construction ofICF/MRfacilities (P,L. 92-223):Minnesota developed more thanthirty ICF/MRfacilities per year inthe 1970s in response to thisprovision,

Community ICF/MRfacilitiesfunded by Medicaid were the firstalternative to regional centers inMinnesota. Today, there are 330privately owned communityICF/MRfacilities ranging in sizefrom 6 to 165 residents. Of these,278 serve fewer than 16 residents,and 52 serve 16 or more. In addi-tion, regional centers have ICF/MRcertified beds.

In 1983, the Minnesota Legisla-ture placed a moratorium on newconstruction and expansion ofICF/MRbeds. It also directed theDepartment of Human Services toreduce the number of combinedbeds in regional centers and com-munity ICF/MRfacilities from 7,500to 7,000 by 1986. The moratoriumwas directly connected to the ap-plication for a Home and Commu-nity Based Waiver in Minnesotaallowing Medicaid funds to beused for a wide range of supportswith the exception of room andboard. The savings accrued fromnot developing ICF/MRfacilitiesand from reducing the number ofICF/MRbeds has been used tofund waivered services. The mora-torium, the decision to reduce thenumber of ICF/MR beds, and theuse of the Home and CommunityBased Waiver all represent signifi-cant shifts in thinking.

Nursing homes represent an-other alternative to regional cen-ters. They are not viewed, however,as an acceptable communityplacement for people with devel-opmental disabilities under the ageof 65 because they are not re-quired to provide active treatment.The Department of Human Ser-vices estimates that 580 peoplewith developmental disabilities un-der the age of 65 were living innursing homes as of July, 1986.

24

Smaller, MoreIndividualized OtXions

The individual approach to ser-vices in the community reflects anewer and still developing way ofthinking about where people withdevelopmental disabilities live, Theemphasis is on promoting desir-able outcomes through individual-ized planning and casemanagement, The goal is not to“make a placement, ” but rather toflexibly design and manage a vari-ety of settings and resources whichwill support the development of areal home. The emphasis is on us-ing typical residential settings.Needed support might be minor ormajor and involve one or more ofthe following—a daily phone call orregular visit to the home, an accessramp or bathlift, special training forparents, periodic respite, or a live-in roommate or care provider,These supports are important andoften critical. They do not, how-ever, alter the desirable character-istics of a “home.” They can beprovided in typical houses as indi-cated in the following descriptions,

Supported LivingArrangements

Supported Living Arrangements(SLAS)provide habilitation ser-vices and supervision for up to 24hours a day for people with devel-opmental disabilities who needregular and/or specialized ser-vices. These services may be pro-vided in the person’s own home, aspecial foster home, or a smallgroup home,Up to sixadultsorthree children can be accommo-dated inanSM. Regularhousingis used as much as possible. Fund-ing is provided under Foster Careor the Home and CommunityBased Waiver,

Foster CareFoster care is provided by

families who qualify and are li-censed to provide homes for peo-ple with developmental disabilities.Foster families are reimbursed bythe county on a monthly basis. Asof September, 1986, there were482 adults and 769 children withdevelopmental disabilities receiv-ing foster care in Minnesota, not in-cluding those individuals who werereceiving waivered services. ManySLA services are provided in fosterhomes.

Foster care offers great potentialfor a real home-home-like size,choice and control. Much de-pends, however, on the interestsand values of the foster parents.The involvement of the individual’snatural family may or may not bepossible. Foster homes mayprovide a very home-like arrange-ment, but monitoring is necessarybecause licensing standards donot guarantee the values and con-ditions of a real home. One notabledifference between foster care andother residential services for peo-ple with developmental disabilitiesis that counties certify foster homesand enforce standards.

Semi-Independent LivingServices

Semi-Independent Living Ser-vices (SILS) are intended for peo-ple who require less than 24 hoursof supervision and are able to man-age their own home with little assis-tance. A typical arrangementinvolves two to four adults in anapartment or house with supervi-sionandneededservices(coun-seling and training in self-care,shopping, cooking, cleaning and/or transportation) provided by a li-censed agency. The primary goalof SILS is to promote indepen-dence and self-sufficiency with ap-propriate and necessary supportand backup assistance.

SILS are funded by grants fromthe state to county boards com-bined with county Community So-cial Service Act dollars, In fiscalyear 1986, the state contributed$2,620,800 (70 percent) and coun-ties contributed $1,183,100 (30percent). In 1986, the number of in-dividuals who received SILS ser-vices averaged 830. People whouse SILS and are not capable of fullfinancial self-support may receivesupplemental income from one or acombination of the following: Sup-plemental Security Income (SSI),Minnesota Supplemental Aid(MSA), Social Security, Housingand Urban Development Section 8,General Assistance (GA) and foodstamps.

The Natural Family HomeMore children with developmen-

tal disabilities live in natural familyhomes than all other arrangementscombined. Most families with chil-dren who have developmental dis-abilities receive no publicassistance. The Home and Com-munity Based Waiver and the Fam-ily Subsidy Program do providesupport to a limited number offamilies. These programs are in-tended to make family living possi-ble for children who wouldotherwise require an out-of-homeplacement,

The Home and CommunityBased Waiver waives Medicaidregulations to encourage people toleave ICF/MRfacilities and to pre-vent people from being placed outof the home into these facilities.Services involve case manage-ment, respite care, homemakerand in-home support services,supportedlivingarrangements,day habilitation and minor adapta-tions to a house or apartment,

25

Thereality is that less than one per-cent of all residential funds areused to support families—the peo-ple most often involved in provid-ing a real home for people withdeve/opmenta/ disabilities.

[n order to qualify for waiveredservices a person must: 1) have adiagnosed developmental disabil-ity; 2) be eligible for Medicaid; 3)be a resident of an ICF/MRfacility,or at risk of becoming a residentwithin one year if community sup-port is not provided; and 4) haveplanned and documented needsfor daily intervention, In 1986, theMinnesota Legislature limited thenumber of persons allowed to re-ceive services under the waiver to1,000. In 1986, the Division of Men-tal Retardation at the MinnesotaDepartment of Human Services re-ported an average monthlycaseload of 345 people receivingwaivered services. Counties havereceived an allotment for waiveredservices and are in varying stagesof planning for individuals to usethe waiver funds.

Another type of individualizedapproach is the Family SubsidyProgram—a cash grant to familiesto cover a portion of expenses fordiagnostic assessment, home-maker services, training, specialequipment, visiting nurses, thera-pists, preschool programs, relatedtransportation, and/or parental re-lief or child care, The maximum al-lowance for each family is $250 permonth or $3,000 per year. Thisstate funded program is intendedto assist families to maintain theirchildren with developmental dis-abilities at home. During the firstnine months of 1986, a monthly av-erage of 255 families received fam-ily subsidies averaging $235 permonth and 146 families were on aprogram waiting list as of Septem-ber, 1986. Because of a fiscal cri-sis, the 1986 Legislature reducedthe program budget for FamilySubsidy to $709,000 in FY 1987from $737,000 in FY 1986. At thesame time, the upper limit of ageeligibility was increased from 18 to22 years.

New Ways of DevelopingIndividualized Options

At the same time facilities andsmaller community options havedeveloped in Minnesota, we alsohave had increased experiencewith different ways of organizingthe delivery of services. The idea ofsupporting families so their chil-dren can stay at home was a majorchange in thinking.

Five other methods of servicedelivery, each quite different, arealso developing in Minnesota: casemanagement; core cluster servicedelivery systems; consumer-owned housing; state operatedcommunity based programs; andcenters for independent living.

Casemanagementis necessaryto broker and manage the processof delivering services to peoplewith developmental disabilities.Counties are responsible forproviding case management underRule 185. The basic idea is that thesystem must work for the individualand the case manager’s responsi-bility is to ensure that it does.

Coreclustersprovide a networkof services that are programmati-cally and administratively linked toa “hub” or “core” residence withina geographic area. The clusterprovides a full array of individual-ized living environments and othersupport services to individuals andtheir families. In Minnesota, an ex-ample of a core cluster arrange-ment is being developed byAdaptive Living, Inc. in WashingtonCounty.

26

Consumer-ownedhousingar-rangements are a recent develop-ment in Canada, the NortheasternUnited Statesand Minnesota,Families or individuals with devel-opmental disabilities buy or renthousing, and receive support ser-vices. Because an individual has ahome, it is the services that changeas individual needs change. Insome cases substantial support isprovided by neighbors. Formal ser-vices are involved in a supplemen-tal way. The emphasis is ondeveloping and supporting a homeand neighborhood life for the indi-vidual by providing services asthey are needed. A few Minnesotafamilies have developed such ar-rangements for their sons anddaughters. In Winnipeg, Canada60 people living in 20 householdsbelong to the Prairie Housing Co-operative. Twelve of the 60 peoplehave disabilities.

Stateoperatedprogramsaredesigned to redirect regional cen-ter resources, personnel and resi-dents into community basedservices. These programs are in apilot stage operating through theregional centers at Cambridge andFaribault. The intent is to facilitatethe transition of both residents andregional center employees to thecommunity.

Centersfor IndependentLiv-ingwere authorized by the Reha-bilitation Act of 1973, and arefunded by federal and state funds.They were created to provide ser-vices for people with disabilities sothey can live and work more inde-pendently. Their primary function isto assist people through: peercounseling, housing assistance,accessibility modifications, jobplacement assistance, attendantcare referral, assistance with trans-portation, independent living train-ing, and preventive services, Thereare now five centers for indepen-dent living in Minnesota located atRochester, Marshall, St, Cloud, Hi-bbing, and the Metro area.

People are better oft in communityprograms—they are happier, re- Impact of Developmentsceive more benefits, at less cost....Thepeep/e who make the greatest A number of outcomes havegains in the community are those clearly resulted from the new ap-with the most severe and profound preaches in the area of develop-handicaps (Conroy, 1986). mental disabilities:

●

●

●

There is a wider array of residen-tial services in Minnesota,Fewer people are living in re-gional centers, and fewer are en-tering them.More people, especially chil-dren, are able to live withfamilies and in smaller commu-nity alternatives.The new way of thinking is

shaped increasingly by the bene-fits of having a real home and bythe support and relationships pos-sible in a real home. On the otherhand, our way of acting seems de-termined more by federal funding.The State of Minnesota has takenadvantage of the Home and Com-munity Based Waiver and federalfunding for Foster Care. In additionand without federal assistance,Minnesota also has funded theFamily Subsidy and Semi-indepen-dent Living Services programs. To-gether these programs serve 22percent of the total number of peo-ple served, but consume 17 per-cent of the funds.

The nature and quality of resi-dential services for people with de-velopmental disabilities areshaped in major ways by the sizeof budget appropriations and theterms and conditions of funding. Itis extremely difficult to comparethe costs of various residential ser-vice options because of varyingdefinitions, assumptions, account-ing procedures and economic con-cepts---none of which are readilyapparent in the reported fundingfigures. Limited, comparative costinformation, however, is useful fortwo purposes: 1) it includes totaland unit costs of particular residen-tial services; and 2) it indicates thesources of funding which wouldrequire change in order to affectthe nature of residential servicesprovided.

Table 3 presents each level ofgovernment’s expenditures for thevarious residential services and fa-cilities in Minnesota. The data areaccurate, but direct comparisonsbetween services are not possiblefor several reasons. For example,regional centers involve 24-hourcare in all domains of life, whilecommunity ICF/MRfacilitiesprovide a place to live with dayprograms, transportation, andother services provided sepa-rately. There also are differencesin visible and invisible costs. For in-stance, the cost of caring for achild under the Home and Commu-nity Based Waiver or Family Sub-sidy is far greater than the publicexpenditures for these programs.They are paid out of family incomeor provided “in kind” by parents,guardians, relatives and friends.

28

Total Federal, State and County Expendlturee for Publicly SubsidizedLiving Arrangement for Minneeotana with Developmental Disabilities, FY 1986

Table3

ExpenditureTotal People

Facility/Arrangement Federal State County Total Serveda

aUnduplicated Count of PersonsServed, Minnesota Department of HumanServices MentalRetardationDivision, (Note:Other figures in text refer to average daily or average monthly numbers.)

bChildFoster Care data from 1986 were unavailable, Figures reported are from 1985,

SourcesandFormulasforTable3Regional Centera, ICF/MR and WaiverCost Data: FY 86. Department of HumanServices Mental Retardation Division, Sep-tember, 1986. Amounts are based on a

standard formula: 53 percent federal, 42percent state, 5 percent county,

Nursing Homes: Nursing Homes PaymentsSummary Report #OD6698, Minnesota De-partment of Human Services, April, 1986,Figures were obtained by applying the aver-age Medicaid per diem rate for nursinghomes to the number of persons with a di-agnosis of mental retardation, The federal,state and county amounts were figuredfrom the 53 percent/42 percent/5 percentformula

Family Subsidy: Department of HumanServices Mental Retardation Division. Inmost cases 100 percent of Family Subsidypayments are made by the State, however,some counties also contribute to theprogram.

SILS: Department of Human Sewices Men-tal Retardation Division. The State pays 70percent of the cost for SILS; the county pays30 percent for its SILS recipients,

Adult Foster Care: Survey of County SocialService Agencies, Adult Foster Care Divi-sion, Department of Human Services, Au-gust 1, 1986, (These figures represent anestimate; final analysis of the survey can beobtained from the Division.) Figures wereobtained using an average monthly basepayment per person of $500: $224 paid bySSI (federal Supplemental Security Income)which is a fixed amount, regardless of themonthly costs, and the remainder paid byMSA (Minnesota Supplemental Aid). MSApayments are based on an 85 percent state,15 percent county share formula. The $224from SSIequals 44 percent of $500, The re-maining 56 percent ($276) is paid by MSA,

Child Foster Care: Figures computed asfollows: 28 percent of the total childrenserved are eligible for AFDC (Aid to Familieswith Dependent Children), so the federalshare of 53 percent reimbursable under Ti-tle IV-Eof the Social Security Act is appliedto that 28 percent (215 children). The re-maining child foster payments are based onCSSA(Community Social Services Act)block grants which are 25 percent federal,25 percent state and 50 percent countydollars.

29

The Need for FundingReform

The patterns in funding sourcesand service directions are clear:

● The Family Subsidy Programs,SILS, and Foster Care arelargely state and countyinitiatives which prevent institu-tionalization, promote reinstitu-tionalization and supportindividual living arrangements.The Medicaid waiver reinforcesthese state and local initiatives toprovide individualized supportand community integration.

● Medicaid funds are the largestsource of support for residentialfacilities such as regional cen-ters, community ICF/MRfacili-ties, and nursing homes.Medicaid regulations reinforcethe focus on programming andcongregate care.

In this context, the critical policyissue becomes one of redirectingand expanding individualized op-tions to better meet the needs ofpeople with developmental disabil-ities to live in real homes. The char-acter of the current system clearlyis shaped by Medicaid funding—about 94 percent of the $241 mil-lion spent on residential servicesfor people with developmental dis-abilities is regulated by Medicaid.

Funding very definitely is deter-mining services. Changes in policyto support individuals will requirechanges in funding structures. In1984 the Citizens League studiedfive groups of people (elderly, juve-niles, mentally ill, chemically de-pendent, and developmentallydisabled) who live in out-of-homeplacements. The Citizens Leagueidentified characteristics of Medi-caid funding and the correspond-ing reforms necessary to makefunding more responsive to individ-ual needs.

30

A NEW WAY OF

We have changed our way ofthinking about how people with de-velopmental disabilities can be-come productive citizens andmake contributions to their commu-nities, We used to spend yearspreparing people with disabilitiesfor eventual work or providing themwith sheltered places in which towork, In Minnesota and many othercommunities, we have learned thatby focusing on preparing peoplefor work, we have often created cir-cumstances that result in peoplenever actually getting jobs. Todaywe have learned that if we supportindividuals to find jobs, we canthen quite effectively teach themthe skills for that job and makeadaptations to the work place thatincrease their ability to do the job.We can support people to workwhile training them on the job (seeFigure 2).

We have learned that if we assistpeople to find, obtain and retainemployment, there are significantbenefits for the people as well asfor society, The individuals earn awage, have the opportunity tomake a contribution to the commu-nity, are more able to learn fromand develop relationships withnon-handicapped people, andhave greater opportunities to exer-cise choice in their lives. The com-munity, at the same time, derivesthe benefits of their work and re-lates with people who have disabil-ities as contributing citizens.

id7Alternative Appro tTraditional Job PI ent

Figure 2

Source:Rood,7985.

31

Employment is important to mostcitizens and citizens with develop-mental disabilities are no excep-tion. The unfortunate reality is thatmost of these citizens are not work-ing. Lou Harris and Associates(1986) indicated that two-thirds ofall Americans with disabilities be-tween the ages of 16 and 64 arenot working, One in four works fulltime, and another ten percent workpart-time. Two-thirds of those whoare not working said they wouldlike to have a job.

Not only are people with disabili-ties excluded from places of work,they are excluded from beingcounted in the labor force. Accord-ing to Harris, 62 percent of adults(16-64 years) with disabilities arenot counted in the labor force-they are either not working or notlooking for work.

Several agencies, communities,states, and the federal governmentare redesigning the way vocationaland employment services are de-livered to people with developmen-tal disabilities. This change is mostevident in the number of states re-ceiving grants from the U.S. De-partment of Education Office ofSpecial Education and Rehabilita-tive Services (OSERS)to establishstatewide systems of supportedemployment opportunities for peo-ple with severe disabilities. On Oc-tober 1, 1985, ten states, includingMinnesota were awarded grants,and on October 1, 1986 an addi-tional seventeen states became in-volved. Over one-half of the statesare now initiating changes from asystem of sheltered employmentand day activities to one based onsupported employment.

Policy and ServiceDevelopments inMinnesota

The evolution of policies and ser-vices related to employment inMinnesota has moved from the in-stitutional approach to an individu-alized, supported employmentapproach, with many stages in-be-tween. This progression of thinkingabout work for people with devel-opmental disabilities is describedbelow.

Institutional Approachto Work

Historically, institutions em-ployed residents in work situationswithin the institution, but little atten-tion was paid to preparing them forproductive work in the community.This was most evident in the in-volvement of residents in state hos-pital-operated farms. Such farmsare no longer common, but thereare other opportunities for workwithin institutional settings. During1984, Minnesota regional centersspent $1,089,570 in pay to resi-dents for work performed. This rep-resented .7 percent of the totaloperating expenditures for the re-gional centers (Minnesota StatePlanning Agency, 1985).

Community andIndividual Approaches toEmployment

Over the last two decades therehave been two distinct types of de-velopments in community servicesrelated to work and employment—the early development of facilitiesto provide rehabilitation and shel-tered employment services; andthe more recent development ofsupported employment programs.Changes in the federal Rehabilita-tion Act and other legislation havereflected historical developmentsin each of these areas.

The Rehabilitation Act of 1973(P,L, 93-112) authorized andsupported a range of services,including:

Vocational rehabilitation ser-vices (including medical, psy-chiatric, psychological, socialand vocational services).

Testing, fitting or training in theuse of prosthetic and orthoticdevices.

Prevocational conditioning orrecreation therapy.

Physical and occupational ther-apy,

Speech and hearing therapy.

Evaluation of rehabilitation po-tential.

Personal and work adjustment.

Vocational training aimed at ca-reer advancement.

Evaluation or control of specificdisabilities.

Orientation or mobility servicesto people who are blind.

Extended employment (for thosewho cannot compete in the labormarket).

32

Thetime has come when we canno longer tolerate the invisibility ofthe handicapped in America.,..Thesepeople have the right to live,to work and to the best of their abi/-ity-to know the dignity to whichevery human being is entitled(Humphrey, 1972).

Bob, a maintenance person, works ina supported employment project for

the Radisson University.

33

This legislation led to the develop-ment of a network of facility-basedrehabilitation and sheltered em-ployment services. The 1986amendments to the RehabilitationAct acknowledge the new way ofworking, These amendments in-clude the following importantelements:

●

●

●

●

Supported employment is rec-ognized as an acceptableoutcome for employability. Sup-ported employment is defined asemployment in an integrated set-ting for individuals with severedisabilities for whom such em-ployment has not traditionallyoccurred.

Severe disability is defined interms of functioning level andextent of services requiredrather than a diagnostic label.

Rehabilitation engineering isrecognized as a component ofvocational rehabilitation. Thismeans the systematic applica-tion of technology to helpindividuals with disabilities over-come barriers in education, re-habilitation, employment andindependent living.

Individualized written rehabilita-tion plans are to include specificprovisions for individuals withsevere disabilities including astatement as to how servicesduring employment will be pro-vided,

Rehabilitation ServicesIn 1985, there were 36 rehabilita-

tion facilities certified, accredited

andfundedby theMinnesotaDe-partmentof Jobs and Training, Di-vision of Rehabilitation Services.Under the auspices of these facili-ties, it is possible to provide shel-tered work or employment-relatedservices including vocational eval-uation, work adjustment training,work component, work activity cen-ters, and/or long-term shelteredemployment. Table 4 sumniarizesthe number of programs in Minne-sota, the number of people served,and the revenue by major sourcefor 1985.

34

Numbers of Progrsms, People with DlsabllltieeServed, Average Annual Wage and Revenue by Source for ExtendedEmployment Services in Minnesota RehabilitationFacilities During 1985

Table 4Characteristics Rehsbiiitation Extended Empioymant Programa

Long Term CommunityWork Work Sheltered Based

Componant Activity Employment Employment

Source:Andrews,1986.

Generally, people with develop-mental disabilities are placed inprograms on the basis of assess-ments of their productivity level.Traditionally, individuals with themost severe disabilities are placedin work component programs;those considered more capableare placed in work activity pro-grams; and those viewed as themost capable are placed in long-term sheltered employment, Theemployment services funded un-der the Division of RehabilitationServices are described below.

●

●

�

VocationalEvaluationservicesare intended to determine a per-son’s job potential, In 1985, suchservices were provided for 1,466clients of the Division of Rehabili-tation Services. The Division allo-cated $625,235 in revenues fromstate and federal appropriationsfor this service.

WorkAdjustmentTrainingisan extended training service de-signed to help people with dis-abilities learn specific workhabits, attitudes and skills, Dur-ing 1985, 1,401 individuals re-ceived this service. The Divisionof Rehabilitation Services allo-cated $1,536,662 to this servicefrom federal and state revenues.

WorkComponentservices areprovided in-developmentalachievement centers throughcooperative agreements withlong-term sheltered employmentworkshops which are directly af-fected by their production out-come. The service operatesunder the workshops’ submini-mum wage certificates. In 1985,1,734 people were involved inwork component services pro-vided through fourteen of thelong-term sheltered employmentworkshops. The average annualwage was $89. Total revenuessupporting these services was$397,351 with 72 percent com-ing from the Division of Rehabili-tation Services grants.

.

●

●

WorkActivityCentersprovideactivity for which wages arepaid. The expected level of pro-ductivity is less than required forsheltered employment. Wagespaid for work performed aregenerally 25 percent of the legalminimum wage. In 1973, thesheltered workshop law wasamended to provide for suchcenters. By 1985, 22 of the 36 re-habilitation facilities operatedwork activity centers and served1,408 participants. The averageannual wage was $531 and par-ticipants worked an average of3.4 hours a day. The total rev-enue available for all work activ-ity centers during 1985 was$6,442,521. Table 4 indicatesthat the largest portion of thisrevenue came from counties andthe Division of Rehabilitation Ser-vices-$4,362,01 Oor 68 per-cent. The remaining 32 percentwas covered by sales, subcon-tracts and other income.Long-termShelteredEmploy-,mentis defined as the provisionof paid employment for an indefi-nite period of time for peoplewith severe disabilities who areunable to meet production stan-dards required in competitiveemployment. Wages paid mustbeat least 25 percent of the min-imum wage. In 1965, Minnesotawas one of the first states to for-mally establish and fund shel-tered employment (MS. 129Aand 8 MCAR 54.0080). By 1985,27 of the 36 rehabilitation facili-tiesprovidedlong-termshel-tered employment, involving3,353 participants who workedan average of 5.5 hours per day.The average annual wage was$2,020 for participants. The totalrevenue in 1985 for the operationof all sites was $24,127,103. Thelargest source of revenue (seeTable 4) was sales and subcon-tracts—$15,483,750 or 64 per-cent. The remainder came fromcounties, the Division of Rehabil-itation Services ($6,626,585 or28 percent) and other income($2,016,768 or 8 percent).

DevelopmentalAchievement Centers(DACS)

DACSare facilities which providetraining, supervision, habilitation,rehabilitation and/or developmen-tal guidance to people with devel-opmental disabilities on a regularbasis for periods of less than 24hours a day in a place other thanthe person’s own home. DACSwere first established in Minnesotaduring 1961 as pilot projects. Theybecame permanent services in1963 (MS. 252.21), In 1985, 105DACSwere operated by publicagencies and private non-profitcorporations.

A total of 6,389 people partici-pated in DACSduring 1985. Morethan two-thirds (4,458 or 70 per-cent) participated in employment/work programs. Of these, 3,340 (75percent) were involved in projectsoperated within the centers, and1,118 (25 percent) were involved inwork opportunities at sites in thecommunity with supervision fromDAC personnel. Those individualsinvolved in DAC-based workearned an averageof$151 .27a

year. The highest annual wageearned by an individual involved inDAC-based activity was $3,618,On the other hand, those involvedin community work earned an aver-age of $274.04 per year, and thehighest annual wage of an individ-ual was $4,030 during 1985,

In 1985, a total of $30,098,309was allocated for all adult DAC pro-grams and services. The portion ofthis allocation used for employ-ment programs is not known, Fund-ing for DACScomes from federal,state and county appropriations(95.5 percent) with an additionalfunding from grants and donations(4,5 percent) as shown in Figure 3,

Developmental Achievement CenteraTotal Revenue for 1985

Figure 3

OtherGovernmentFunds 4,4%$1,332,912

]itedsup,366

Via\port,181

/;4.5%

Schools 17. $997,596$163,488

SourceMinnesotaDepartment of Human Services, 1985.

35

Integrated EmploymentOpportunities

Both developmental achieve-ment centers and rehabilitation

facilities are providing work oppor-tunities outside of facilities usingcommunity based employmentand supported employment ap-proaches at sites in the community.

CommunityBasedEmploy-ment(CBE) programs provide thefollowing services and opportuni-ties:

●

●

●

●

●

●

Work and service hours outsideof long-term sheltered employ-ment facilities at minimum wageor a lesser rate if paid under thesubminimum wage certificate.

Subsidy to the employer.

Full time or 30 hours of on-the-job training.

Frequent daily interaction withother, non-handicapped em-ployees,

Appropriate development of theindividual’s vocational potential.

Supervision from the long-termsheltered employment s;aff.

In 1985, 30 rehabilitation facilitieswere offering these services to1,017 individuals. It is estimatedthat 1,684 will participate in 1986.The average annual income in1985was $410. This figure ap-pears low because individuals aredropped from the program andconsidered competitively em-ployed once they have developedsufficient proficiency on the job.The primary limitation to commu-nity based employment is thattraining and support for each indi-vidual are only funded for twoyears.

SupportedEmploymentpro-grams provide intensive, ongoingservices required by people whoare unable to secure and maintaincompetitive employment, The in-tent is to provide long-term sup-port, or support as long as it isneeded, The U.S. Department ofEducation Office of Special Educa-tion and Rehabilitative Services(OSERS)defines supported em-ployment as follows:

.%ppor?ed employment memspaid work In a variety of Integratedsettings, particularity regular work.S;:eS.espe~;~//ydesigned forseverely handicapped individuals,i:respec?iveof age or vocational~otefr[ia/ ?or:1)people for whomcompetitive employment at orabove minimum wage [raditiona//yhas not been available; and 2,)peo-ple who, because of dis~bi!ity,need intensive ongoing post sm-ploy,mentsupport to perfcrm in thework setting.

Supported employment is furtheroutlined in OSERSguidelineswhich specify the minimum criteriaas:

●

●

●

At least 20 hours of paid workper week;

No more than eight persons withdisabilities served at any one jobsite; and

Ongoing publicly-funded sup-port.

These guidelines show how sup-ported employment differs fromtraditional services. Traditional ser-vices focus on short-term assis-tance and training in order toproduce long-term employment,For people who have the mostsevere disabilities, short-term sup-port is not sufficient for obtainingand maintaining employment. On-going support can mean:

Job analysis—matching individ-uals wih jobs.

Job training—teaching socialand work skills required on thejob.

Ongoing follow-along on the jobfor as long as required,

Transportation,

Ongoing support to the em-ployer,

Rosemary,a cleaningperson,worksina supportedemploymentprojectfor

36 the RadissonUniversity.

Theactivities carried out under theMcKnight Foundation’s programheiped to “humanize” the system(Patten, 1985).

“The key words are se/f-suffi-ciency, productivity, and integra-tion into the community” (Dr. JeanE/der, Assistant Secretary, HumanDevelopment Services, U.S. De-partment of Health and HumanServices).

For each individual, there may bevariations in the amount of supportprovided over time, the degree ofsocial and physical integration withnon-disabled workers, and pay op-tions, Other variations of these ap-proaches are being explored anddeveloped in Minnesota. In partic-ular, the McKnight Foundation, theGovernor’s Planning Council onDevelopmental Disabilities, the Di-vision of Rehabilitation Services,the federal supported employmentgrants and local providers havebeen instrumental in developingsupported employment as both aprogram and an outcome in thestate.

In 1982, the McKnight Founda-tion’s Developmental DisabilitiesGrant Program targeted systemschange, including change in em-ployment services. One result ofthe McKnight effort was moreopenness to new ideas and newways of creating work opportuni-ties. The Governor’s Planning

Council on Developmental Disabili-ties Employment Grants helped es-tablish more creative employmentopportunities across the state. As aresult over 950 persons were em-ployed in the community. The 1986OSERSproject provided the con-text for a joint agency venture inMinnesota involving the Depart-ment of Human Services, the De-partment of Jobs and Training, theDepartment of Education, and theState Planning Agency. Concurrentwith, and as part of these initia-

tives, there hasbeen a series ofconferences and consultations.These have involved state confer-ences with national leaders in sup-ported employment, activitiesrelated to educational integrationand vocational training, and train-ing aimed at raising parental ex-pectations,

Some of the effects of supportedemployment services identified bylocal providers include the follow-ing:

As a result of the achievementsmade by people who have beenplaced, many professionalshave changed their perceptionsabout what is possible.

The retention rate in communityjob placement has been higherthan expected,

Community job placement typi-cally has been accompanied byimprovements in grooming, pos-ture and behavior.

Community job placement hasbeen accompanied by move-ment to less restrictive places tolive (Ron Kaliszewski, personalcommunication, 1986),

In additionto these efforts, thefive-year project funded by OSERScalled “The Minnesota SupportedEmployment Project,” has identi-fied as its purpose supporting peo-ple with the most severe disabilitiesand assisting them to obtain andretain employment. Six supportedemployment programs are now un-derway. The goal for the first yearwas for the six agencies to make acombined total of 75 placements ofpeople with the most severe dis-abilities in supported employmentsituations.

38

Impact of Develo~ments

During the last few years in Min-nesota there has been an emer-gence of statewide and concertedefforts to secure and support em-ployment for people with develop-mental disabilities. Increasingly,attention is shifting to a concernwith real work for pay alongsidenon-disabled people, The impactof higher expectations, innovativeprojects, conferences and consul-tations is being felt, The system isprogressing, but it has far to go inaddressing the underemployment,inappropriate employment or com-plete unemployment of individualswith disabilities,

Certainly the application of thesupported employment approachis consistent with the new way ofthinking about people with devel-opmental disabilities, The momen-tum is building and as we gainexperience with this new way ofcreating opportunities, many is-sues are becoming clearer:

Once again, funding regulationsare often inconsistent with themore individualized approach.For instance, developmentalachievement centers are naturalproviders of supported employ-ment programs, yet with Medi-caid as the primary source ofrevenue for DACS,funding re-strictions in the area of employ-ment make leadership by DACSdifficult.

To make supported employmenta permanent and integrated partof policy and practice, it shouldbe included in state statute andfunds should be allocated, Todate, operational guidelines forsupported employment havebeen determined by the termsand conditions of the federalOSERSgrant and by recommen-dations in the professional litera-ture.

The change in both policy andpractice from segregated worksites to more dispersed employ-ment in integrated settings re-quires skills and values trainingfor service organizations andstaff, a different approach tomonitoring, and support to theparents and guardians of peoplewith developmental disabilities,

Another viewpoint is outlined in thefollowing passage coauthored byDr. Jean Elder, Assistant Secre-tary, U.S. Office of Human Devel-opment Services:

One of the most pervasive prob-lems with today’s public programsis the major work disincentives thatthey create, particularly by the in-come suppofl and health care pro-grams. Theseprograms creatework disincentives in at least threedifferent ways: (1) by reducing thenet gain from work, (2) by fosteringdependency and negative atti-tudes toward work, and (3) by of-fering greater Income security topersons who continue as benefi-ciaries of these programs thancou/d be obtained in regu/ar em-ployment (Con/ey, Nob/e and E/-der, 1986,p. 65).

Recent Congressional action ad-dressed fiscal disincentives forworkers and is helping to build mo-mentum for individualized employ-ment support. Section 1619 of theSocial Security Act was enacted asa 3-year demonstration project ef-fective January 1, 1981 (made per-manent in 1986) to remove workdisincentives for recipients of Sup-plemental Security Income (SS1)disability benefits who work de-spite continuing disabilities. Priorto enactment of Section 1619, re-cipients could lose eligibility forcash benefits and Medicaid cover-age if they engaged in substantialgainful activity. Section 1619 con-tains two basic provisions:

Section (a): Extension of cashand Medicaid benefits to individ-uals whose earnings prevent eli-gibility for regular SSI cashbenefits (as income increases,cash benefits are reduced);

Section (b): Extension of Medi-caid coverage to individualswhose earnings, although highenough to prevent eligibility forSSI, are not high enough tocover medical care.

39

SUPPORTING

There are three majormessagesinthisreport,First,there is a newwayofthinkingabouthow,whereandwithwhom people with devel-opmental disabilities can live, learnand work. This new way of thinkinghas involved a shift from a preoc-cupation with preparation, careand treatment to a concentrationon supporting participation, build-ing on capabilities, adaptingenvironments and building rela-tionships. The old way of thinkingmeant offering individuals andfamilies a limited number of op-tions. The new way of thinkingmeans assisting individuals andfamilies in identifying what is im-portant to them, and empoweringthem with decisionmaking andspending authority to act uponthose choices.

Second, the policies, fundingmechanisms and services devel-oped in Minnesota represent ourbest efforts in light of what we haveknown. Recently, though, policiesand innovations in funding haveencouraged us to explorenewservicestrategiesand developexperience with new ways of think-ing and acting,

40

Third, the impact of these devel-opments in new policies and ser-viceshas notyettippedthebalancein the life experiences ofpeople with developmental disabil-ities, Madeleine Will, Assistant Sec-retary of the Office of SpecialEducation and Rehabilitative Ser-vices, summarized the new visionwhen she stated:

Citizens with developmental dis-abilities want the same oppotfuni-ties and ought to have the sameopportunities as other members ofthe community-not because it iscost effective, even though it is,and not because it is prudent, eventhough it is. Theyshould have thesame oppotfunities because theydeserve it (Will, 1984).

There are many national, stateand local initiatives which supportand build on changes in the field ofdevelopmental disabilities. In thefuture, we will look back on theseinitiatives as milestones. Todaythey serve to illuminate the reformswhich are underway in the currentsystem.

Federal Funding Reforms

During 1986 there were numer-ous presentations to Congress andgovernment agencies concerningthe constraints of Medicaid fundingon the abilities of states and com-munities to implement the new wayof thinking in a systematic and reli-able way. Medicaid funding con-sistently supports institutionalapproaches and, according toSenator Lowell Weicker, “.,, resultsin the isolation, segregation, anddependency of individuals”(Weicker, 1986). The Home andCommunity Based Waiver is a be-ginning step in altering this situa-tion, The waiver program hasenabled many states to offer somesupport services to families. Thereis potential for the waiver to providethe flexibility needed to developservices and supports which willenable people to live in real homesand work in real jobs. If the poten-tial of the waiver is to be realized,however, it will be necessary to re-duce restrictions, expand the num-ber of people who can be served,and make the waiver permanent,

II

41

It’s a fami/iarstory, rep/ayed thou-sands of times daily across the na-tion. A lack of openings in existingday programs and residential/ser-vices leading to seemingly endlesswaiting lists. k’s a crisis that’s get-ting bigger every day as the rein-stitutionalization movement grows,and as more people with mental re-tardation graduate from schools,ready to enter the community (As-sociation for Retarded Citizens-UnitedStates, 1986).

Recent amendments to theMedicaid waiver (P,L, 99-272) arein line with these needed reforms.The amendments explicitly autho-rize Medicaid funding for sup-ported employment services forindividuals who are leaving ICF-MRfacilities, The amendments permitstates to request a five-year, ratherthan a three-year, renewal of exist-ing waiver programs and theamendments authorize coverageof case management services.

The waiver is one step in theright direction. There is a clearneed for purposeful restructuringof Medicaid funding. One of thekey elements of funding reformmust be the need for funds to meetthe unique needs of individuals, incontrast to the current system offunding programs. The spirit offunding should reflect that of theEducation for All HandicappedChildren Act (P.L. 94-142). Muchcan be learned from P.L. 94-142and its focus on integration and in-dividualization. The reallocation ofMedicaid funds to support the de-velopment of individual and com-munity services is required to serveand respond to the needs of threegroups of people with develop-mental disabilities:

●

●

●

Those currently living in institu-tiOfW, all of whom would benefitfrom life in the community,

Those currently being served bycommunity programs which areseeking to redesign their ser-vices to conform to the new wayof thinking,andThelargenumbersof peoplewho are receiving no services.

The needs of individuals in institu-tions and of those currently receiv-ing inappropriate services in thecommunity have been a decidedsource of pressure for change. Aneven greater potential source forchange lies in the unmet needs ofindividuals who are waiting forservices.

Developing Alternativesto Institutional Care

A prevailing theme in the newway of thinking emphasizes the in-creasingly shared belief that peo-ple with developmental disabilitiesshould live in the community. Thereis growing support across Minne-sota and across the country tophase out institutions and developcommunity alternatives.

Rhode Island EliminatesInstitutional Care

OnJuly 30, 1986, Rhode IslandGovernor Edward DiPrete an-nounced that the Ladd Centerwould be closed within five years.This will mean that Rhode Islandwill be the first state in the countryto eliminate institutional care for itscitizens with developmental dis-abilities.

Mission of ConnecticutDepartment of MentalRetardation

On February 13, 1986, the De-partment of Mental Retardation inConnecticut approved a new mis-sion statement indicating that it willjoin with others to create the condi-tions under which all people withdevelopmental disabilities experi-ence:

Presenceand participationinConnecticut town life;

Opportunities to develop and ex-ercise competence;Opportunities to make choicesin pursuit of a personal future;

Good relationshipswith familymembers and friends; and

Respect and dignity.

42

Minnesota Counties SetGoal to Return AllResidents in Institutions toTheir Communities

Dakota, Ramsey and WadenaCounties in Minnesota have eachdeclared that they will return allpeople in regional centers to com-munity placements in their countyof residence. This means thatthese counties will actively developor stimulate the development of ap-propriate community arrange-ments for the institutionalizedindividuals under their jurisdic-tions.There were 66 countiesin Minnesota, as of November,1986, with no children in regionalcenters.

County Initiative toDiversify Services

Wadena County has allocatedcounty resources for a contractwith a local ICF/MRfacility to de-velop a SILS program and other di-versified services, This wouldpermit residents of the ICF/MRfa-cility to move to community livingarrangements and, in turn, forcounty residents currently residingin the regional center at Brainerd tomove to the ICF/MR,State policyshould support local efforts toprovide services in the communityby allowing resources to follow theperson to the most appropriate res-idential arrangement. Incentivesshould also be provided to ICF/MRproviders to diversify their servicesto meet the needs of their resi-dents, rather than requiring resi-dents to fit into the programs of thefacilities.

Promoting IndividualizedOptions

Across the country and state,there are a number of initiativeswhich seek to support people withdevelopmental disabilities as indi-viduals and as members of thecommunity. Some examples of lo-cal initiatives follow.

Partnership for QualityServices

This demonstration project is de-signed to maximize the skjlls ofparents and promote cooperationamong parents, professionals, ser-vice-providers and communitymembers to establish mechanismsfor monitoring programs and en-suring quality standards. The proj-ect is funded by the Governor’sPlanning Council on Developmen-tal Disabilities, and is conductedby the Association for RetardedCitizens-Minnesota,

The new way of thinking requiresa different orientation to quality as-surance and evaluation. This proj-ect addresses this issue. The focuson real outcomes and a concentra-tion on the strengths and needs ofthe individual mean that inspec-tions, Iicensure and traditionalevaluation approaches are not ap-propriate.

Through this project we light theway toward a future in which carefor retarded citizens in this nationno iongerneed include large, im-personal institutions. Thiscommit-ment to dignity, qua/ity andcompassion is in the finest tradi-tions of our state (DiPreteJ1986).

It’s the beginning of the end of in-stitutional care.,.. institutions arenot appropriate places for peopleto live (Robeti Carl, Director,Rhode Island Mental RetardationDivision).

43

“The real issue is quality of life, notquality of care” (Jerry Provencal,Superintendent of Macomb-Oak-Iand Mt. Clemens, Michigan).

No matter how much money isspent and how well-intentionedsupporls and services are, thelives of people may not be signifi-cantly altered unless there is a wayof assuring the quality of thosesuppofls (Bruce Kappel, G. AlIanRoeherlnstitute, Toronto, Canada),

44

Alternative CaseManagement Delivery

In Dakota and WashingtonCounties, a project is underway toexplore the feasibility and value ofhaving parents serve as case man-agers for their children with devel-opmental disabilities, By buildingon the interests and talents of par-ents, the project hopes to encour-age parent leadership resulting inbetter and more cost-effective ser-vices. The project is funded by theGovernor’s Planning Council onDevelopmental Disabilities and di-rected by the Association for Re-tarded Citizens-Suburban. Itprovides training and support toparents who are interested in man-aging their children’s services andplans, Parentswill receive trainingand a minimal monthly stipend tocoordinate activities and servicesfor their children with the countycase manager serving as a facilita-tor. A modified voucher systembased on a range of needed ser-vices will be used by the county todisburse funds according to theparent-set plans.

Cooperative ConsumerOwned Housing

SeveralMinnesotafamiliesareembarkingon cooperativeven-turesto purchaseor leasea houseor apartmentfor theirchildrenwithdevelopmentaldisabilities.Familiescontractdirectlyfor sup-portservices,andownandman-agethehousing.Thisenablestheirsonsanddaughtersto livein thecommunityin a home of their ownwith control over the amount andkind of services or supports neces-sary.

Regional Cooperation toMake Waivers AvailableWhere They are Needed

EQhtMinnesotacounties (Bel-trami, Cass, Clearwater, CrowWing, Hubbard, Morrison, Toddand Wadena) have entered into aregional cooperative arrangementfor using waivered services. Thearrangement is coordinated by theRegional Services Specialist, anemployee of the Department of Hu-man Services. This cooperative al-lows the counties not making useof their allocated waiver positionsto make them available to thecounties needing them.

The initiatives outlined above arehelping to create a new vision inMinnesota. The translation of thatvision into reality statewide will de-pend on two changes:

1) Major reforms in federal fundingto encourage the routine andsystematic development of ser-vices and supports to individualsas participating and contributingmembers of their communities.

2) Systematic attention at the state,local, family and individual levelsto ensuring that the vision isachieved.

Professionals need a sense ofurgency in getting people with de-velopmental disabilities out of insti-tutions. Wein America have nopatience for waiting so why do weexpect peep/e with disabilities towait while we plan their lives (JerryProvencal, Superintendent ofMacomb-Oakland, Mt. Clemens,Michigan).

45

Supportinga NewVision–WhatCanMinnesotansDo?Consumers and Parents●

●

●

●

Participate in team meetings andindividual planning sessions andask questions linked to importantaspects of your life:●

●

●

●

How will this plan or series ofactivities assist the individualwith a disability to live andparticipate in the community?Would this objective or activitybe appropriate for a person ofthe same age who is notdisabled?Is this objective or activitygeared to the future andwhere the person will be livingand working?Is the development and sup-port of friendships for the per-son with disabilities a part ofthe plan of action?

Visit other programs, find outwhat they are doing that is use-ful, and ask questions of otherparents and consumers aboutwhat they find helpful.

Join other indi~iduals and organ-izations such as the Associationfor Retarded Citizens, the Asso-ciation for Persons with SevereHandicaps, and the UnitedCerebral PalsyAssociation andother groups to help make re-formsinthesystem.

Findoutwhat is possibleand re-questthatserviceprovidersalsoknowthestateof theart.

As PolicymakersEnsurethat funding is linked tothe achievement of valued out-comes. Welcome and be pre-pared to answer questions aboutwhy a service is being fundedand whether or not it leads to in-dependence, productivity, andintegration,

Make it a point to visit servicesand programs regularly, and talkwith the people whose lives areaffected by them.

Increase the incentives andrecognition for providing qualityservices.

As Professionals and BoardMembers

Be aware of state of the art pro-grams,

Reviewyour practices to ensurethat individuals are treated withrespect and dignity,

Reviseyour program goals andobjectives to ensure that activi-ties are age appropriate, func-tional and communityreferenced.

Respond to the needs of peopleas individuals and ensure thatthey are involved in decision-making,

Continually ask—are we doingthe right thing? Request regularand frequent feedback fromconsumers and families,

As a Citizen, Friend, orNeighbor

Use your relationships in thecommunity to help people withdevelopmental disabilities be-come part of the community,

Welcome individuals with dis-abilities into your neighborhood,school, business, church—be afriend,

Visit the services offered by yourcommunity. Question whetherthe services support and includeindividuals with developmentaldisabilities,

Think about how many friendsyou have who are not paid to talkto you, and compare that to thenumber of friends in the lives ofpeople with disabilities.

As a Community●

●

●

Think about ways to ensure thatpeople with developmental dis-abilities have the opportunity tolive in homes of their own ratherthan service settings and to bereal neighbors,

Look around your communityand discover who is missing orhas had to leave your communitybecause services and supportswere not available, Considerwhat you can do to help them re-turn home.

Set an agenda for creating acommunity that welcomes, in-cludes and supports people withdevelopmental disabilities.

“All communities depend on thecapacity of peopk+on their ful/-ness, on their possibility-the heartof community is ‘capacity. If wewant to create community we buildon capacity of the individuals weserve and not on needs. ”(John McKnight, Associate Director, Centerfor Urban Affairs and Policy Research,Northwestern University)

46

REFERENCESAndrews, J. (1986). A report of the extendedempioymentprogram in Minnesota. St. Paul,MN: Department of Jobs and Training, Divi-sion of Rehabilitation Services.

Association for Retarded Citizens—UnitedStates. (1986). The ARC. 35 (3).

Braddock, D., Hemp, R., Fujiura, G, (1986),Pub/ic expenditures formenta/retardationand developmental disabilities in the UnitedStates: State profi/es. (Second edition).(Public Policy Monograph No. 29). Chicago:University of Illinois, Public Policy AnalysisProgram, Institute for Study of Developmen-tal Disabilities.

Cavalier, A.& Brown, C. (1986). Freedom ofchoice and expression through advancedcomputer technology for persons with pro-toundmenta/ retardation, Arlington, TX: As-sociation for Retarded Citizens—UnitedStates.

Citizens League. (1984). Meeting the crisisin institution/ care. Minneapolis: Author.

Conley, R., Noble, Jr., J.H., & Elder, JK.(1986), Problems with Service Systems. InWE. Kiernan & J. Stark (Eds.), Pathways toemployment foradu/ts with deve/opmenta/disabilities. (pp.67-83).Baltimore:PaulH.BrookesPublishingCompany

Conroy,J.&Bradley,V.(1985).ThePennhurst longitudinal study~ combinedreport of five years of research and analysis:Executive summary. Philadelphia: TempleUniversity, Developmental DisabilitiesCenter.

Donnellan, A, & Negri-Schoultz, N. (1986)review and evaluation of interventions im-plemented by Faribault State Hospital forselected class members in Welsch v.Levine. Madison: University of Wisconsin.

A

Dybwad, G. (1985). In H. Lovett, Cognitivecounseling and the person with specfalneeds: Adapting behavioral approaches tothe socia/ context, (p, v), New York: PraegerPublishers,

Fifield, M. & Smith, B. (1985). A nationa/pro-file of changes in services for adults with de-ve/opmenta/ disabilities. Logan: Utah StateUniversity Press.

Kappel, B. (1986). Making a difference:Lights, camera, action. (p, 15). Downview,Ontario: National Institute on Mental Retar-dation.

Kiernan, WE.& Stark, J. (1985). Employ-ment options for adults with developmentaldLsabi/ities.Logan: Utah State University,Developmental Center for HandicappedPersons.

Lou Harris and Associates, Inc, (1986). The/CD survey of disabled Americans: BringingdisabledAmericansinto the mainstream(Study no. 854009). New York: Author.

Humphrey, H. (1972, January 20). introduc-tion of the Rehabilitation Act of 1973. Con-gressional Record, 118,525,

Minnesota Department of Education.(1986). Transition needs assessment study.St, Paul: Author.

Minnesota Department of Education.(1985). Minnesota specia/ education databook. St. Paul: Author.

Minnesota Department of Education,(1985). Unduplicated child count,,Decem-ber 1, 1985, St. Paul: Author,

Minnesota Department of Human Services,(1986, August). Qua/ity assurance andre-view: SNF, /CF /, /CF // persons with menta/retardation under age 65. St. Paul: Author.

Minnesota Department of Human Services.(1985). 1985 survey of training and habi/ita-tion agencies. St. Paul: Author.

Minnesota Department of Jobs and Train-ing, Minnesota Department of Human Ser-vices, & Minnesota State Planning Agency.(1985). Supported employment in Minne-sota: A state in transition. (Grant No,: 6008-535188). St. Paul: Author.

Minnesota Governor’s Planning Council onDevelopmental Disabilities, (1986), Devel-opmental disabilities three-year state plan,St. Paul: Author.

Minnesota State Planning Agency, (1985),Minnesota’s state hospita/s. St, Paul: Author.

National Association of State Mental Retar-dation Program Directors. (1986, Septem-ber 23). Senate subcommittee holdshearing on Medicaid financing of servicesfor developmentally disabled persons, /nte/-/igence Report. (Bulletin No. 86-75). Alexan-dria, VA: Author.

Office of the Legislative Auditor, ProgramEvaluation Division, State of Minnesota,(1986, February). Deinstitutiona/ization ofmenta//y retarded peep/e. St. Paul: Author,

Office of the Legislative Auditor, ProgramEvaluation Division, State of Minnesota.(1984, March). Evacuationofspecia/ educa-tion. St. Paul: Author,

Patten,S.(1985), An evacuationof theMcKnight comprehensive program in deve/-opmenta/ disabilities. Minneapolis, MN:McKnight Foundation.

Rood, L.S. (1985). Beyond severe disability:Models and strategies for change. Omaha:University of Nebraska, Center for AppliedUrban Research.

U.S. Department of Education. (1985). Com-prehensive compliance review of Minnesotaspecia/ education programs. Washington,DC: Special Education Programs (SEP),

U.S. Department of Health, Education andWelfare. (1963). Menta/ retardation—A na-tiona/p/an fora nationa/prob/em, Washing-ton, DC: U.S. Government Printing Office.

University of Minnesota. (1986). Minnesotapostschoo/transition study. Unpublishedmanuscript. Minneapolis: University Affili-ated Program,

Weicker, L. (1986, September 19). Testi-mony before Senate Health Subcommitteehearings on Medicaid financing of servicesfor developmentally disabled persons.Washington, DC: Author.

Weikart, D, (1983, June). Prevention Strate-gies for Hea/ty Babies and F/ea/thyChi/dren,Testimony before the Select Committee onChildren, Youth and Families, US. House ofRepresentatives, Washington, DC.

Will, M. (1984). OSERSprogramming for thetransition of youth with disabilities: Bridgesfrom school to working life. In J. Chadsey-Rusch (Ed.), Proceedings from EnhancingTransition from School to Workplace forHandicapped Youth Conference. (pp. 29-35). Washington, DC.

Will, M. (1986). Educating students withlearning problems—A shared responsibility.Washington, DC: Clearinghouse on theHandicapped.

Wright, J., Granger, R., & Sameroff, A.(1984). Parental acceptance and develop-mental handicap. In J. Blachard (Ed.),Severelyhandicapped young children andtheir families. Orlando, FL: Academic Press.

Wolfensberger, W. (1975). The origin andnature ofourinstitutiona/ mode/s. Syracuse,NY: Human Policy Press.

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ACKNOWLEDGEMENTS

Many people contributed to thisbook. We are especially grateful tothe individuals with disabilities andtheir families who shared experi-ences that offered valuable in-sights. Special thanks areexpressed to Bob Meyer at theMinnesota Department of HumanServices for facilitating access toinformation and to Karen JohnshoyHesla for supervising preparationof the manuscript. We also wish tothank the members and directorsof advocacy organizations, countyand state government officials, ser-vice providers, teachers, employ-ers and researchers who gave theirtime and technical advice.

Foradditionalfreecopiesor to obtainthispublicationin other formats, such as audiocassette tapes and computer disk, pleasecontact:

Minnesota Governor’s Planning Councilon Developmental Disabilities

300 Centennial Office Building658 Cedar StreetSt. Paul, Minnesota 55155

(612) 296-4018 voice only(612) 296-9962 TDD only(612) 297-7200 fax only

Design: Destiny 2, Inc, St. PaulPhotography: Ann Marsden Photography, Minneapolis