ED 347 720

AUTHORTITLE

INSTITUTION

SPONS AGENCY

PUB DATECONTRACTNOTE

AVAILABLE FROM

PUB TYPE

ELRS PRICEDESCRIPTORS

IDENTIFIERS

ABSTRACT

DOCUMENT RESUME

EC 301 331

Degener, TheresiaPersonal Assistant Service Programs in Germany,Sweden and the USA. Differences and Similarities.World Inst. on Disability and RehabilitationInternational, Oakland, CA.National Inst. on Disability and RehabilitationResearch (ED/OSERS), Washington, DC.Mar 92H133D0000563p.; Sponsored by the Internacional DisabilityExchanges and Studies (IDEAS) Propect.World Institute on Disability, 510 16th St., Oakland,CA 94612 ($10).Reports - Descriptive (141) -- Reports -Evaluative/Feasibility (142)

MF01/PC03 Plus Postage.Ancillary School Services; *Attendants; Civil RightsLegislation; *Delivery Systems; *Disabilities;Employment; *Federal Legislation; Foreign Countries;*Government Role; *Independent Living; ProgramAdministration; Social Services; Welfare ServicesSweden; United States; West Germany

This report compares personal assistance services toenable independent living for people with disabilities in Sweden,West Germany, and the United States. The report focuses on kinds ofpersonal assistant services available, laws governing these services,the extent to which these services are met by each country's socialsecurity and welfare system, and how laws and services relate to theconcept of independent living. After an introduction about personalassistance services in general, the second section looks atindependent living movements in these three countries, and the thirdsection at obstacles of comparing social welfare programs. The fourthsection describes personal assistance services in Sweden and coverssocial security and welfare, social benefits for inhome personalassistance servicer,, services relating to education and employment,administration and structure of programs, and evolution of theSwedish system of services. The following section looks at similarservices in the United States. Covered are antidiscrimination law andthe right to the least restrictive environment, social securfty andwelfare law, federal legislation providing funding sources forpersonal assistant services, services relating to education andemployment, program administration and structure, and programevaluation. The sixth section describes services in West Germany andaddresses: social security and welfare, benefits for inhome personalassistance, education and employment services, program administrationand structure, and program evaluation. A concluding section listsprinciples passed by a 1989 European Conference on PersonalAssistance Services for Disabled Persons and highlights advantagesand disadvantages of each country's programs. (61 reference..) (DB)

Personal AssistantService Programs

_

in Germany, Swedenand the USA

ILL DEPANTENDIT Of EDUCATIONOffice ol EdeestionW Reeeeem end teneroyioneee

EDUCAT1O4AL RE9OURCES INFORMATtONCENTER (ER1C1

IX* &Klement hes been 4,9m1/cod Iswaned teem Me WWI or mem:Maeoeceneteng it

r minor ceengen here even med. to improve

reecoduclion cete of d'y

poente of reeve Or opmeone in tee re) dOCer

ment do re01 netelaarily reorraert orteceol

OCRs positeon a policy

Differences and Similarities

by

Theresia Degener, LLM.

A 1991 publication supported by IStiftung zur FOrderung karperbehinderter

HochbegOter of Liechtenstein and the International Disability ExchangesAnd Studies (IDEAS) Project administered by the World Institute on Dis-

ability wd Rehabilitation International, funded by the U.S. National Institute

on Disability and Rehtbilitatico Research (Grant #H133000005).

BEST COPY AVAILABLE

Personal Assistant ServicePrograms in Germany, Sweden

and the USADifferences and Similarities

bY

Mores la Degener, LL.M.

Fuixied by:

aStiftung zur FOrderung kOrperbehinderter Hochbegabterof Liechtemtein

Sponsored by:

The International DisEtfility Exchanges And Studies (IDEAS) Project

which is funded by

The U.S. National Institute on Disability and Reh&litation Research

The IDEAS Project Is canied out by

The World InstiLite on Disability

andRehabilitation International

Edited by Barbara DuncanDesign and Typesetting by Kathy Marchael

Additional copies of this publication availablefor $10 to cover airmail postage and handling

from the World institute on Disability orRehabilitation international, addresses on back cover.

Published March 1992

Preface 1

I. Personal Assistance Services for Independent Living of Disabled People 3

A. Independence and Disability 3

B. Personal Assistance Service as a Key to Independent Living 4

C. Personal Assistance Service as a Social Policy Issue 4

IL Independent Living Movements in the United States, Sweden and West Germany

A. Origins and Concepts of the American Independent Living Movement 7

1. The Concept of Equality 7

2. The Influence of Other Social Movements 8

3. The Independent Living Model of Personal Assistance Services 8

B. The Swedish Independent Living Movement 9

C. The West German Independent Living Movement 10

Obstacles of Compafing Social Welfare Programs 13

IV. Personal Assistance Services in Sweden 15

A. Social Security and Welfare in Sweden 15

B. Social Benefits for (Inhome) Personal Assistance Services 15

1. Social Insurance 15

a. National Health and Pension Insurance 15

(1) Health Care 15

(2) Pension Insurance 16

(3) Work Injury Insurance 17

2. Social Welfare 17

C. Personal Assistance Services with Respect to Education and Employment ....... . . . 17

D. Pereonal Assistance Programs: Administration and Structure 18

E. Evolution of the Swedish System of Personal Assistance Services 18

V. Personal Assistance Services in the United States 21

A. Antidiscrimination Law and the Right to the Least Restrictive Environment 21

B. Social Security and Welfare Law b the United States 22

1. Income Maintenance Programs For Disabled Americans 23

a. Worker's Compensation 23

b. Social Security Disability Benefits 23

c. Federal Supplemental Security Income 23

d. Veteran's Compensation 23

2. Federal Legislation Providing Funding Sources for Personal Assistance Services 24

a. Medicare 24

b. Medicaid and Medicaid Waivers 24

(1) Medicaid 24

(2) Medicaid Waivers 25

c. Social Service Block Grant 25

d. Titie III of the Older American Act 26

C. Personal Assistance with Respect to Education and Employment 26

1. Personal Assistance Services at School 26

2. Personal Assistance Services at Work 26

D. Personal Assistance Programs: Administration and Structure 27

1. Funding Sources and Dissemination 27

2. Goals, Administration and Structure 27

E. Evaluation of Personal Assistance Services in the United States 28

VI. Personal Assistance Services in West Germany 31

A. Social Security and Welfare in West Germany 31

B. Benefits for (Inhome) Personal Assistance 31

1. Social Insurance 32

a. Retirement- and Disability Insurance 32

b. Health Insurance 32

c. Accident Insurance 32

2. Social Maintenance 33

3. Social Assistance 33

C. Personal Assistance Services with Respect to Education and Employment 34

1. Education 34

2. Employment 34

D. Personal Assistance Programs: Administration and Structure 35

1. Dissemination and Financial Situation 36

2. Goals, Administration and Structure 36

E. Evaluation of the West German System of Personal Assistance Services 37

VII. Conclusions 39

Footnotes 45

References

The present LL.M. thesis descrthes and comparescertain services for disabled people in three differentcountries. These have been called inhome-supportservices, attendant care services, home services, com-munity-based services, personal assistance servicesand more. Basically all these names describe serviceswhich enable disabled people with functional limita-tions to live in the mainstream of society. There aredifferent understandings with respect to the scope ofthese services, the tasks involved, the delivery model,the role of the disabled person and other aspects.Sometimes the name relates to a certain serviceparadigm as is the case with 'personal assistanceservice. This term has been chosen by disabilityactivists and stands for those services that aredesigned to enable independent living (IL) for dis-abled people, which itself is a concept with severalmeanings. Burin essence, IL, means allowing peoplewith disabilities to live as they choose in their com-munities, rather than confining them in institu-tions."'

In this thesis the term personal assistance ser-vices is used and the implied service paradigm alsoserves as the measurement for comparison. The lead-ing questions of my study have been: (1) What kindof services for disabled people area available inSweden, West Germany and the United States, whichcould be celled personal assistance services in abroader sense? (2) What are the laws governing theseservices? Is the need for these services met by eachcountals social security and welfare system? (3) Howdo the laws and the services relate to the concept ofindependent living?

The study can only be seen as a first step to a legalexamination of the subject of personal assistance

1

services to disabled people. Therefore, appeals proce-dures and similar aspects cf social programs provid-ing those services are not covered by this thesis.

Another point that should be mentioned is that Ihave studied law and lived in the United States aswell as having completed my first law degree in WestGermany. But I have never been to Sweden, neitherdo I speak the language. Thus, my study with respectto this country had to rely on materials published inEnglish or in German. Shortcomings in my descrip-tion of the Swedish system might be a result of thesecircumstances.

Nevertheless, I found it important to includeSweden in the comparison, because it represents anextreme form of social welfare state in which theseservices to disabled persons have a long history. Atthe other end of the scale, the United States repre-sents a country with less of a social safety net for itscitizens, but which has a strong independent livingor advocacy movement led by disabled persons.

I have been motivated to undertake this studybecause of my personal involvement in the WestGerman disability movement An equally strongmotivation, however, is the recognition that personalassistance services are essential for the future. Thegrowing number of people in need of these servicesrequires new directions in social policy and law.

The present thesis would not have been possiblewithout the kind support of many people. ThereforeI finally want to express my thanks to all the groupsand individuals who encouraged my study. Specialthanks to the World Institute on Disability, the Dis-

2

ability Rights Education and Defense Fund, the staffaf the Boa It Hall Faculty, to Barbara Duncan ofRehabilitation International and above all to myacademic adviser, Professor Stephen Sugarman.

I also wish to express my gratitude to the Foun-dation "Stiftung mar Ftirderung kiirperbehindarterHochbegabters of Liechtenstein who gave the finan-cial support for the publication cithe thesis.

1 Crewe N.M., Zola LK (1987) Independent Living for Physically Disabled People, Jossey-Bass, SanFrancisco, London, at ix

2

kiftpadance aid MateyDisabled people are frequently described as a

group precluded from the 'American Dream of Inde-pendence.'

In general what is meant by this is that disabledpersons are segregated from the mainstream ofsociety and unable to lead a self-determined life. Formany nondisabled persons, the concepts of inde-pendencu and disability do not go together.

Disabled people are frequently described asa group precluded from the 'AmericanDream of Independence. In general whatis meant by this is that disabled personsare segregated from the mainstream ofsociety and unable to lead a self-deter-mined life.

The concept of independence, however, can bedefined in various ways. For many it implieseconomic independence as opposed to being on socialwelfare rolls. Others might associate independencewith being one's own employer instead of someoneelse's employee or with independence from gender-based expectations. For disabled persons the conceptof independence has many meanings and, amongothers, depends on the kind of disability involved. Forexample, for wheelchair riders architectural barrierssuch as steps and narrow doors create segregationand dependence. Many disabled persons are depend-ent on social welfare or social security because of lackof education, inaccessible workplaces, or just at-titudinal barriers which prevent them from achievingtheir own income.2

3

Avast number of disabled persons need technicalor personal assistance in their daily living. From anondisabled perspective, these persons are depend-ent and this view reflects the societal view of dis-ability as a tragedy, as a status of dependence andinactivity.

This long-established stereotype of disability isnow being challenged in the United States as well asin Europe with the rise of disability movementswhich emphasize civil rights and equal protectioninstead of charity and good will as the basis fordisability policy."'

For the members of these movements the conceptof independence does not imply carrying out dailyactivities without personal or technical help. JudyHeumann, one of the U.S. activists of the disabilitymovement and presently Co-Director of the WorldInstitute on Disability, once defined the concept ofindependence for (physically) disabled persons: wrous, independence does not mean doing things physi-cally alone. It means being able to make independentdecisions. It ie a mental process not contingent upona 'normal body."

Thus, a person's need for personal assistance dueto disability does not preclude the possibility of inde-pendence. According to this view, one of the reasons

This long-established stereotype of dis-ability is now being challenged in theUnited States as well as in Europe with therise of disability movements which em-ptasize civil rights and equal protectioninstead of charity and good will as thebasis for disability policy.

;

why disabled persons are foreclosed from themainstream of society is the luck of personal assis-tance services.

'People have often gotten help from othersbut it was given in the context of duty andcharity. Help in the context of IndependentLiving is instead given within theframework of a civil right and a serviceunder the control of the recipient---where,when, how and by whom."

B. Perscrol Aulstoics Service key tohxlspindent

Not all perssmal assistance, however, guaranteesindependence. Rather this depends on its form andits scope.

Provided in a traditional institution or nursinghome, personal assistance inevitably creates depend-ance. The disabled person is completely subject to theinstitutional rules and schedules of treatment.Ris/her entire daily living arrangementh are "takencare' of. In institutional settings disabled personsthus lose control of their personal care.

Dependence can be created outside institutionsas well, if personal assistance is provided as a matterof charity of family duty. Irving Kenneth Zola,prominent member of the U.S. disability movement,5points to this aspect of personal assistance: "Peoplehave often gotten help from others but it was givenin the context of duty and charity. Help in the contextof Independent Living is instead given within theframework of a civil right and a service under thecontrol of the recipientwhere, when, how and bywhom."

To define the scope of personal assistance fordisabled persons is a difficult enterprise because itimplies a variety of activities, depending on the dis-ability involved, which itself is a difficuR term todefine.7 The World Institute on Disability describespersonal assistance tasks as 'ones that individualswould normally do for themselves if they did not havea disability". Included are: "1) personal maintenanceand hygiene activities such as dressing, grooming,feeding, bathing, respiration, and toilet functions,including bowel, bladder, catheter and menstrualtasks; 2) mobility tasks such as getting into and outof bed, wheelchair or tub; 3) household maintenancetasks such as cleaning, shopping, meal preparation,laundering and long term heavy cleaning and repairs;4) infant and child related tasks such as bathing,diapering and feeding; 5) cognitive or life manage-

4

went activities such as money management, plan-ning and decision making; 6) security-related ser-vices such as daily monitoring by phone; and 7)communications services such as interpreting forpeople with visual disabilities. This definitionreveals that personal assistance as a tool for inde-pendent living is considered to be awlicable to allkinds of disabilities. One could describe personalassistance as a substitute for any functional limita-tion as a result of disability,

C. Rums! Assistoce SeivIces as a Soft!Policy Issue

Personal assistance services for disabled personsare not a recent invention of the modern disabilitymovement in Europe or the United States. 'Care forthe disabled' has long been an arena ci concern ofsocial welfare and public health agencies. Initially,scare' for disabled and elderly persons who had nofamily support was provided in institutions such asalmshouses, and later hospitals or nursing homes.*Attendant care' and "inhome health services"emerged in Sweden during the 1930's and in theUnited States and West Germany after World WarII.w

During recent decades, those social servicesproviding personal assistance for disabled and elder-ly citizens in their homes and within private environ-ments have gained increasing attention within thefields of social policy and public health.

Besides the voices from the disability move-ments, social changes in Europe as well as in theUnited States increased the demand for expandedpersonal assistance services.

Improvements in medical technologies includingsurgical techniques and medication now allow morepersons to survive injuries or life threatening dis-eases, or, simply to live longer.

Demographic changes have increased the societalproportion of elderly persons, while at the same timethe family structure has undergone modifications.Growing female participation in the labor force,rising divorce rates, and the trend toward smallerfamily units contributed to the family's decreasingability to provide regular personal assistance to dis-abled family members.

At the same time, deinstitutionalization move-ments came into being on both continents, stronglyinsistent that alternatives in community-based set-tings had to be developed.

In addition to this growing demand for publicpersonal assistance services, budgetary cuts of thelate 70's and early 80's caused governments to be

.budgetary cuts of the late 70's andearly 80's caused governments to be inter-ested in replacing institutional care by thepresumably 'cheaper option' of com-munity-based services.

interested in replacing institutional care by thepresumably "cheaper optime of community-basedservices.

In the United States during the late 80's andearly 70's a growing disability movement shaped the

debate about such social services through the crea-tion of what is called the independent living move-ment. Its influence on Sweden and West Germany aswell as other countries through international net-working among domestic disability movements issignificant.

In all three countries social policy makers andlegislators are uow confronted with social movementsthat have adopted the subject ci personal assistancefor independent living as their cause. The variouslegal frameworks and social programs concerningthese kinds of services provided by each country shallbe explored and compared in this thesis.

5 Ii

II ON* and Concepts of the Anti=inthopenchird Lhrkig Wavernint

Personal assistance services differ from tradi-tional "attendant care* with respect to the notion ofdisability, the service setting, the service deliverymethod and helping style, because of values andphilosophy of the independent living movement.

1. The Concept of EqualityThe independent living movement was founded

by U.S. disabled activists who were influenced by thegrowing struggle for equal opportunities of the civilrights movement and the feminist movement in thelate 60's.

The independent living movement wasfounded by U.S. disabled activists whowere influenced by the growing 3trugglefor equal opportunities of the civil rightsmovement and the feminist movement inthe late 60's. A number of disa bled personshad been active in these movements andthey came to see their disability in the samepolitical context as black people viewedtheir race and feminists their gender.

A number of disabled persons had been active inthese movements and they came to see their dis-ability in the same political context as black peopleviewed their race and feminists their gender."

Disalility was reconceptualized by the activistsas a different state of being rather than a tragedy. Itwas recognized as a basis of discrimination by non-

disabled persons which took different forms, such asarchitectural and educational barriers as well asprejudice.

Similes to the black people's civil rights struggle,they begin to demand equal protection under the lawand equal opportunity in American society. However,disabled activists from the start proposed an equalityconcept that demands that society undertake specialefforts in order to equalize opportunities for its die-abled members. Unlike race and in most casesgender, disability was immediately acksiowledged asa difference which would not totally become ir-relevant once past discrimination and wrongs hadbeen remedied." No meaningful equal opportunityfor (severely) disabled persons can be achievedwithout accommodations and assistance. Thus, dis-abled activists began to promote an equality conceptthat is based on the needs of all members of society,rather than on the "neutrality* concept of equal treat-ment.

According to this equality mode, nondiscrimina-tion with regard to disabled persons requires theremoval of barriers that exclude groups of disabledpersons and some reasonable accommodations inorder to eliminate disadvantages that have beenplaced on people because of their disability. Installa-tion of ramps and modifications of working places, forexmple, are nondiscrimination requirements be-cause access denial would have the effect of a denialof equal rights.

According to this concept of civil rights for dis-abled persons, individuals are to be entitled to lead a?elf-determined life with equal opportunities withinthe general community. This in turn requiresprovision of independent living services to assuredisabled persons necessary assistance. Put different-

ly, social rights or btmefits such as income main-ten.ance and medical are considered as prerequisitesfor the performance of civil rights by ale independentliving movement. is

Thus, from the beginning, the independent livingmovement has been concerned with civil rights andbenefits at the same time."

2. The Influence of Other SocialMovementsThe independent living movement proclaims a

concept of social services which also incorporates thevalues of other social movements beyond the civilrights movement These are the deinstitutionalim-tion movement, the consumerism and self-help move-ment, and what was called the demedicalizationmovement."

The deinstitutionalization movement in theUnited States started out as a community mentalhealth movement. Normalization and communityliving were put forward as the guiding ideology forservices for mentally disabled persons.Deinstitutionalization principles emphasize thetherapeutic as well as moral or ethical value of peoplewith disabilities having ordinary life experiences.'5One principle flowing from this ideology that becameimportant to the independent living movement is theprinciple ordignity of der." It is based on the notionthat the right to normalization and mainstreamingimplies the right to experience failure. Without thisexperience the disabled person is said to lack trueindependence; the right to choose between good andbad. The principle also finds the notion of sheltered(segregated) settings as antithetical to the develop-ment of disabled children and adults.

The significance of the demedicalizatim move-ment was that it challenged the dominance of themedical profession. Based on Ivan Illich's analysis",that too many social problems are Imedicalized' andthe conviction that individuals should take up morereeptmatility for themselves, it supports the view ofthe disabled person as the bt tt expert on histher owndisability. As opposed to the medical and vocationalrehabilitation model, (whereby professionals deter-mine what is best for the disabled "patient') thedisabled persons is considered a consumer who isresponsille for hie/her own life and medical wellbeing. As a principle of consumerism, the disabledconsumer has a right to information andsovereignty."

3. The Independent Living Model ofPerS011111 AU/1611100 Services

The independent living model rejects the pater-nal notion of personal, professional care developed

8

under the institutional and traditional inhome healthservice models. Rather it is based on the philosophythat to be independent implies empowerment andself-direction. Thus, an appropriate personal assis-tance service would adhere to the principle that usershave *the opportunity, if desired, to exercise as muchcontrol as they ars capable of handling over thedirection and provision of these servicesi.e. whodoes them, how, and when.m

Personal assistance services that are based onthis concept imply distinguishing features withregard to setting, service delivery method and help-ing style. Those are: (1) Assistance is provided in thehome or private environment of the consumer, (2)Services are provided as a commodity, not on thebasis cecharity and altruism The delivery method ingeneral is composed of attendant referral and actualassistance and involves at least three parties: theconsumer, the (referral) center and the attendant; (3)The consumer, not the provider, directs the provisionof personal assistance; and (4) health maintenanceand medical care, if at all, play only a subordinaterole. If necessary, those tasks, as any other task ofpersonal assistance, are directed by the consumer.n

As a self-help movement, the independent living(IL) movement began to set up its own Centers forIndependent Living (CIL). The famous first one wasfounded in 1972 in Berkeley, by disabled students ofthe University of California who had to find a way oforganizing personal assistance services if theywanted to live in the community.n

Managed primarily by disabled staff members,CIL Berkeley now offers a wide range of services todisabled members of the community. Among them:attendant referral, transportation, advocacy ser-vices, training in IL skills and health maintenance,housing referral, wheelchair repair, and peer coun-selling.° Unlike other Centers, CIL Berkeley so farhas not offered a residential program.

On the East Coast, ECIL, the Center of Inde-pendent Living in Boston, was opened in 1974. Thereservices focused on the provision of attendant ser-vices in cluster apartments, transitional housing ser-vice and housing referral.°

Transitional housing service is a program fordisabled persons who need some training before theycan live on their own. For a short period of time,residential services are offered in an ECIL-ownedfacility, During a at time the consumer is introducedto basic IL skills, such as attendant managing,household maintenance and health care training.

Attendant service in connection with clusterapartments differs from other attendant service in so

1 4

The models differed according to whetherthey provide ongoing or transitional ser-vice, whether they are residential or non-residential, and whether they providedirect or referral services. The philosophyof IL as a form of Mt:determination, how-ever, has been uniform.

far that a certain staff is provided for several apart-ments within one or several nearby buildings. Dis-abled persons who live in those apartments share thisattendant stiffly calling on them when assistance isrequired.

Another CIL which opened in the early seventieswas New Options* in Houston. There the main focusamong a wide range of services offered was on tran-sitional housing."

CIL Berkeley, NUL and New Options* showthat there were different models of IndependentLiving from the early beginning of the IL movementThe models differed according to whether they pro-vide ongoing or transitional service, whether they areresidential or non-residential, and whether they pro-vide direct or referral services." The philosmhy of ILas a form of self-determination, however, has beenuniform. The variety &services offered grew as CIL'sdeveloped and became more established." Yet atten-dant services remain one ofthe key services of CIL's."By the end of 1981 about 200 CIL's hal emergedthroughout the United States."

B. The Swedish indeptmdet LivMg Movement

Sweden was one of the first countries to adopt thenormalization and desegregation principles. In the30's already, inhome household services for disabledpersons (and other groups, such as families withchildren) were part of the social welfare system. Inthe 60's Sweden was one of the Scandinavian nationsthat was internationally recognized for its desegrega-till policy. For severely disabled persons, however,social services were rare. Therefore, persons whoneeded more personal astastance than during officialworking hours available, had to rely on family mem-bers or were kept institutionalized.

In response to this shortcoming the Vokus Foun-dation* was created by disability organisations" in1968. Its main goal was to realize integrated livingfor disabled people who needed access to personalhome-based assistance for 24 hours a day."

The solution was seen in cluster housing, where,in addition to part time 'home helper* servicesprovided by the local governments, a personal assis-

tance staff was on call 24 hours a day, seven days aweek.

In response 280 such cluster housing apartmentsJere built in 13 cities of Sweden, the common pattern

being that ten to fifteen apartments of one largeapartment complex, of 50 or more units, were madeaccessible and available to disabled persons.=

Further political efforts of Swedish disability or-ganizatims succeeded in charging the local govern-ments with the responaility to provide such clusterhousing services in 1973. Since that date this ap-proach is referred to as hoenderservice" which hasbeen translated as housing with service.°

By 1985 an additional 720 apartments had beenbuilt throughout the country. In order to achievemore integrated living with nondisabled tenants, thenumber of accessalle apartments in one complex hasbeen decreased to in 5-10 units. For reasons of privacythe former concept of common bathing, kitchen,laundry and dining facilities has been abolished."

Despite the achievements of integrated livingthrough hoenderservicew, some dissatisfaction ofconsumers led to what might be called the secondgeneration of the Swedish independent living move-ment. In 1983, as a result of a seminar on the inde-pendent living movement which took place inStockholm", STIL (Stockholm's Independent LivingGroup) was founded in order to seek more consumerinput into Swedish personal assistance services.

Dissatisfaction arouse over several perceivedshortcomings of the cluster housing solution as wellas the municipal personal assistance service such as:the high turnover among the staff, the frequent chan-ges of workers whom a consumer is exposed to andthe limited consumer power in the decision of who isto assist a given tenants° Further conflicts arosebecause the high professionalism of personal assis-tance service was seen to have the side effect ofpaternalism towards the disabled consumer. For in-stance, assistants who were employed by the localgovernments, were obliged to report problems theynoticed in the apartment of the consumer, such asalcoholism, sickness or lack of technical aids. Whilethis obligatory observation might have preventedemergency situations for some disabled consumers,others felt it was an invasion of their privacy"?

In contrast to other Swedish disability organiza-tions, STIL's constituency consists of disabled per-sons with extensive disabilities who recwized that,unless they take up the issue themselves, the inde-pendent living concept will not be implemented forth em .

915

While STIL does not reject cluster housing as onepossalble option for integrated living, its agenda focus-ses on consumer input in terms of the independentliving concept:

"Persons with extensive disabilities, accord-ing to STIL, despite their common need ofpersonal assistance are individuals with dif-ferent personalities and social and economicbackground who have the same right to findtheir own way of living as their non-disabkdpeers. The flexibility implied by this right,STIL members claim, depends on two re-quirvments:

Not linking housing and services into abundk as in cluster housing

Municipal, or preferably, central state per-sonal assistance allowances directly paidto the consumers to enable them to pur-chase the service from whomever theychoose.'18

Meanwhile, about 20 STIL members founded acooperative in order to organize their own PAS. Eachmember hires and trains his/her own assistant andhas hisiller own account within the cooperative inorder to pay them. The municipality performs theneeds assessment of each cooperative member andPAS benefits are paid directly into his/her accountwithin the cooperative. The amount of benefit cor-responds to the wilts of municipal assistance servicesor "boenderservice". Thus, for Stockholmmunicipality no additional costs are involved.

The members of the cooperative share ad-ministrative costs for such tasks as maintaining anoffice, public relations work, or workshops on atten-dant management They also assist each other indealing with the municipal administration withrespect to needs assessment, etc.

Furthermore, the cooperative entered intonegotiations with the "home helpers" union in orderto clarify the employment relationship between assis-tant and consumer. The result of these negotiationsis a contract between the cooperative and the union.°

C. Tim West German kidependent LivingMovemtmt

Disability policy in the former West Germanyafter World War II has been determined by six largenon-governmental welfare organizations° and agrowing number of parents' organizations with spe-cial interest in different categories of disability, suchas cerebral pfilsy, polio, mental disability andthalidomide disabilities."

10

During the early 70's the first self-helpgroups of younger disabled peopleemerged, persons who strongly rejected thetraditional attitude and wanted to speakfor themselves. Inspired by the Scan-dinavian and Italian desegregation move-ments, these groups sought integrationinto the mainstream of society for all dis-abled persons regardless of category andseverity of disability.

The non-governmental welfare organizationshave a long tradition in Germany, officially beingacknowledged as bodies of the social welfare systemin 1926. They basically provide social services to theneedy of all groups across the population. Among awide variety of services, they own hospitals, institu-tions, and community-based "Sozialstationee. Thelatter are a sort of social agency delivering medicaland nonmedical inhome support services to familieswith children, ill or disabled persons and elderlypeople.°

Since they additionally conduct research andwork closely together with governmental depart-ments, their influence on disability policy is sig-nificant.°

The parents' groups constituted themselves asself-help groups providing information and counsell-ing to parents of disabled children." The welfareorganizations and the parents' groups have in com-mon that their approach to disability is determinedby altruism and charity.

During the early 70's the first self-help groups ofyounger disabled people emerged, persons whostrongly rejected the traditional attitude and wantedto speak for themselves. Inspired by the Scan-dinavian and Italian desegregation movements,these groups sought integration into the mainstreamof society for all disabled persons regardless ofcategory and severity of disability. Besides in-tegrated education and access to public transporta-tion, the main focus was on deinstitutionalization.

At that time hardly any alternative to institution-al living existed for disabled persons in need of per-sonal assistance.

aSozialstationen" services basically provided"meals on wheels' and paramedical inhome treat-ment through nurses. Those with more needs wereleft with the 'choice" between family support---ifavailable---or institutionalization in one of the largerehabilitation centers, boarding schools for disabled

1 6

After a radicalization of the dthabled move-ment during the International Year on Dis-ability in 1981 which brought aboui aboom of new disability groups, personalassistance centers, known as "AmbulanteHilfsdienste (AHD) organized by disabledpersons and their nondisabled friendsspread over the country.

childrei, or nursing homes. Some disabled and non-disabled members of the emerging disability move-ment tried to change this situation by organizing 24hour attendant services.

The first well-known self-help organizationproviding 24 hour personal assistance services andtransportation was founded in Munich 1978 by in-habitants and staff members of "Ffennigparadew, ata large institution for disabled persons called VIF(Vereinigung Intergrationsforderung eN). Thegroup's initial goal was to realize independent livingfar its disabled members, but very soon the clientelegrew. More disabled people moved to Munich due tothe lack of daily 24 hour personal assistance serviceselsewhere in West Germany and arising dissatisfac-tion over the shortcomings of professionalized ser-vices available from llozialstaticeee.

Similar self-help groups were founded inFrankiiirt and Cologne. After a radicalization of thedisabled movement during the International Year onDisability in 1981° which brought about a boom ofnew disability groups, personal assistance centers,known as "Ambulante Hilfsdienste" (AHD) organizedby disabled persons and their nondisabled friendsspread over the country.°

Unlike mSozialstationen", the centers' services

are not limited with regard to time or assistance taskssuch as household maintenance. The principle is thatpersonal assistance services should be provided in allfields of daily living; at home as well as at school orwork and during leisure time. Customers are dis-abled persons of all ages and all kinds ofdisabilities.°

The organization structure of AHD's differs withrespect to the range of services provided's and servicedelivery method. Some provide only attendant refer-ral service; most have an additional pool &employedattendants consisting mainly of' conscientious objec-tors between the ages of 18 and 25 who complete theirmandatory social service as a substitute for militaryservice.°

Others try to implement the independent livingconcept as developed in the United States, inspiredby an international conference on IndependentLiving which took place in March 1982 in Munich.

All AHD's, however, share a common platform offour principles:

Because disabled persons are the best experts ontheir own disabilities they determine their needof perscual assistance themselves.

Assistants shall be lay-workers in order toprevent professional paternalism.

Except for some basic introductions provided bythe centers, attendants are trained directly bythe consumer.

The consumer pays the attendant directly on afee-for-services basis.°

The realization of these principles varies fromcenter to center, and some modifications have beenadopted as to personal assistance for persons withcognitive disabilities. However, the platform stillfunctions a a general guideline.

11 1 7

010,0 vtr,

.1)",',''

'e

t

,

4

I 14v.

P37,7,'Y

,

1.4"

'

;;;,

re) tl.,5:tv

-41"

*

r

A comparison of social programs and associatedlegislation of the United States, Sweden and theFederal Republic ci Germany concerned with per-sonal assistance services (PAS) faces a variety ofproblems.

In general, every social insurance and social wel-fare program has its own historical, economic andsocial background which shapes the values and goalsincorporated in each country's system and therelationship between individuals' government andsociety.

For example, Sweden in not without reasonreferred to as a "Welfare State. It is a small highlyindustrialized country, which has not been at war forover 170 years and which during World War II andup to the 70's experienced much better economicgrowth than other countries. Social welfare policy iscommitted to assuring all members of society theopportunity to realize their potential for growth andself-fulfillment°

The dominant role of trade associations as wellas nongovernmental welfare organizations with morethan a hundred years of history is unique to theGerman history d social welfare. While the rights towelfare and social insurance are constitutionallyprotected°, tne relationship between governmentand citizens with regard to social welfare and securityis determined by a societal concept of organized self-help with some reluctance to institute strong govern-ment control. This led to a system of social welfareand social insurance in which administration isshared between trade and industry associations andwelfare organizations on the one hand and govern-ment on the other hand." The United States, asalready mentioned, is known for its strong civil liber-ty and rights history but comparatively has a "poor

13

I it

a

record" with respect to social security and welfarerights. The relationship between (state and federal)government and citizen seems to be much more deter-mined by the 'right to be let alone" and the norm ofindividual self-help" than by a riglit to welfare orsocial security.° Another unique feature in certainU.S. welfare law and programs is the concept of"cooperative federalism", which has been incor-porated by the Social Security Act of the 1930's andis based on a shared or joint approach of federal andstate government to certain welfare and securityissues." As a consequence, unlike Sweden and WestGermany, the United States' administrative or-ganization is determined by vertical as well ashorizontal divisions of administrative authority.°

These basic differences among the threecountries have to be kept in mind to enable com-parison of their systems of social insurance and wel-fare programa

Further difficulties arise when one tries to isolateand compare the systems in terms of a single issuesuch as Personal Assistance Services (PAS) for per-sons with disabilities. Here, the danger is evengreater of giving a false picture of the situation of thepeople under consideration.

Furthermore, it should be noted at this point,that the presence or absence of a certain program orprocedure might be caused not only by legislativeinaction or intention but rather by the existence ofother "resources", such as private insurance, or com-pensation in other legal fields such as torts.

None of the three countries provide a single dis-ability PAS program for all persons regardless ofincome, status or cause of disability. For this reasonit is important to look at the disability benefit system

1 9

None of the three countries provi d e a singledisability PAS prcgram for all personsregardless of income, status or cause ofdisability. For this mason it is importantto look at the disability benefit system ofeach country in a more general way and toask where PAS hos been acknowledged asan important need and how and to whatdegree this :teed is beuzg fzdfilled.

of each country in a more general way and to askwhere FAS La been acknowledged as an importantneed and how and to what degree this need is beingMfilled. There are different ways in which this issuecan be approached. Some countries consider PASneed as part of special living expenses and approachthe issue within their income maintenance scheme.Another apwoach would be to view it as an entirelymedical problem, thus delegating the issue to thefield of health insurance and medical care.

PAS benefits can be provided in cash or in kind.This will raise the issue of whether inkind or cashbenefits are more likely to meet the concept of inde-pendent living.

Two more obstacles should be mentioned withregard to a comparison of disability benefits ingeneral and PAS for disabled persons especially.

First, in almost all countries with social securitysystems and disability la w, one finds several defini-tions of disability. Commonly, definitions relate tothe general purpose of the program or legislation inquestion." Who is considered to be disabled can differenormously according to the various approaches. Forinstance, a medical model of definition which looks at

14

certain deviations from the departure point of a nmi-disabled physical or psychological condition, mightprovide a long list of identified disabilities derivedfrom a certain standard of scitstific knowledge.*This list will, however, not be concerned with theactual skills of those persons labelled "disable'.

A contrasting vocational approach to definingdisability lochs directly at a person's ability to engagein gainfirl emplcs went. Yet here too, the group ofdisabler persons can be broadened by looking at the

ability to work in general and tightened if one looksat one professional activity only. Vice versa, a personmight be disabled with respect to most jobs, but bevery qualified for one certain job.

Other factors, such as environmental and socialattitude can influence a disabled person's functionallimitation. For instance a wheelchair user who livesin a community where streets, public buildings andtransportation are accessible does not need an assis-tant in order to overcome steps.

The last factor plays an important role in deter-mining who needs PAS. Accessible housing andtransportation, as well as technical aids can greatlydiminish the need for PAS.° However, even underoptimal accessibility conditions, there will always bea need for PAS by some disabled persons."

The thesis will not cover housing and public ac-commodation policyincluding transporation°2.Rather, the focus shall be on PAS in its purest form,meaning a persons assisting a disabled person indaily living activities."

Since the paradigm for PAS in this thesis is theconcept of independent living, each country's systemwill be scrutinized with respect to personal assistancein all fields of daily living; at home, in school and atwork and with regard to all ages.

2

A. Social Securfty and Welfare hi Sweden

Sweden's social insurance and welfare system isknown for covering pretty much the entire populationwith regard to a wide range of needs. As mentionedearlier, using social welfare aids is not considered asa state of unwelcome dependency but rather as astate of unwelcome dependency but rather as ameans for all members of society to realize theirpotential for growth and self-fulfillment." The basicwelfare philosophy rests on the concept of solidarityamong all people in Sweden and on the goal thateveryone should be entitled to a share of the systemon equal conditions.°

B. Social Benefits for (Mime) PersonalAssistance Services

The need for personal assistance is acknowledgedby both the social insurance and social assistancesystems. It is illuminating that from the very begin-ning, inhome services were not only provided to dis-abled people but also to parents with children, singlemothers and elderly people.°

It is illuminating that from the very begin-ning, inhome services were not onlyprovided to disabled people but also toparents with children, single mothers andelderly people.

I. Social InsuranceSocial insurance is defined to include national

health insurance (medical, dental and parental in-surance), and national pension insurance (partial,basic and supplemental insurance), as well as workinjury insurance and unemployment insurance.'"

15

a

a. National Health and PensionInsurance

All Swedish residents are registered at a regionalinsurance office when they reach the age of 16 andare thus eligible for national insurance. Children arecovered by their parent's insurance.

(1) Health Care

Health care insurance consists of medical ser-vices, sickness benefits and parental insurance.

Medical services include such services asphysicians' care, dental treatment, hospital treat-ment and paramedical treatment (physical therapy,etc.). People who have income loss due to illness,injury or disability are entitled to sickness benefitswhichup to a certain ceilingamount to 90% of theperson's regular job income. Parental insuranceprotects against income loss in connection withchildbirth.°

In general, the Swedish social insurance systemis financed by national and local taxes, fees chargedon employers and the self-employed, and interestincome or capital withdrawals from various funds.°This explains why in principle medical care is free ofcharge in Sweden although a modest fee is chargedfor outpatient treatment. The rest of the costs arecovered by what is called 'allowance for medicalcarer" which cover the various payments to bemade in connection with medical care. As a rulethese allowances are paid directly by the socialinsuntnce office to the health care administra-tion or the individual practitioner in charge ofthe patient's treatment. Medical allowance alsopartly covers medical inhome service andrehabilitation for disabled persons, includingtechnical and personal aids such as interpret.

ing services for deaf persona and inhome healthtreatment for disabled persons with chronicdiseams.

Since health care in Sweden is regarded as beingclearly a task of the public sector, these medicalservices are provided by the local authorities, thecounty councils." The county councils are responsiblefor meeting the medical needs of all residents accord-ing to the Health and Medical Service Act of 1983."The Act sets general standards for health care: Itmust be of good quality and meet the needs of popula-tion. It must further be based on the patient's rightto self-determination and integrity."

Apart from these standards, however, the countycouncils have vast discretion with respect to or-ganization, see; z and personnel of the medical ser-vice.

Since health care in Sweden is regarded asbeing clearly a task of the public sector,these medical services are provided by thelocal authoriies, the county councils.

Another disability-related benefit within thehealth insurance scheme is provided by the parentalinsurance.

Though its main purpose is to provide benefits inconnection with childbirth", it also assures benefitsto parents who have to abstain from work in order tolook after a sick or disabled child for a period of up to60 days a year."

(2) Pension insurance

The national pension insurance scheme consistsof mainly two types of public pension: (old age) basicpension and supplementary pension (ATP). Both pen-sions refer to a certain 'base amount* according towhich the actual payout is computed."

The main difference is that, unlike basic pension,the ATP pension requires that the pensioner hadearned incom e for a certain amount ofyears. A personwho had earned income in excess of the base amountfor at least three years, is entitled to-earning-relatedbenefits on top of the basic pension.

The basic pension is currently 96% of the baseamount for a single person. This amount, however, isnot sufficient with respect to daily living costs. There-fore, there is a special benefit for pensioners whoreceive no or little ATP pension, called pension sup-plement. In 1987 it amounted to 48% of the baseamount per annum."

18

Disabled persons are eligible for this basic pen-sionin this case called disability pensionif theyare 16 years or older, have not reached the retirementage of 65 and have a reduced working capacity by atleast 50%. A full, two-thirds or half the basic pensionmay be granted depending on the extent of reducedworking capacity.

In addition, there are special benefits availableunder the basic pension scheme; disability-relatedneeds are covered by pension supplement, disabilityallowance and childcare allowance.

Disabled pensioners who have no or little employ-ment record are entitled to receive double pensionsupplements to compensate for the high living coststheir disability entails."

In addition to these income benefits, a disabledperson who needs personal assistance qualifies for adisability allowance to supplement the basic pension.

The benefit is designed to give the disabled per-sons some financial resources for PAS and otherdisability-related costs.

A person aged 16 or over, who has become dis-abled before the age of 65 is entitled to this allowanceif the following requirements are met. His/her "func-tional capacity' has to be reduced for at least one yearand to the extent that the insured:

"requires fairly time-consuming help fromanother person in his everyday life.

requires continuous help from another person inorder to be able to work or study.

has considerable additional costs in some otherway."'

Needs assessment is performed by the social in-surance office".

Although disability allowances are generallylinked with eligibility for the basic (disability) pen-sion, it is also payable to disabled workers or studentswho have a disability that entitles them to disabilityallowance. In the cage of a worker who has such adisability but who can work to such an extent thats/he is ineligible for disability pension, this benefit iscalled "disablement compensation"."

Unlike pension benefits, the disability allowanceis not taxable. Institutionalized disabled people, ofcourse, are not entitled to this benefit."

Childcare allowances are paid to parents whotake care of their disabled children under 16 years,who need a considerable amount of help or super-vision because of their disability. It is equal to a full

or half disability pension under the basic pensionscheme", plus supplement benefits.

Lie disability allowance, this benefit will not beprovided to parents of disabled children under 16years clage if the disabled child rexides in an institu-tion.

(3) Work Ir Vury Insurance

This insurance is compulsory and covers gainful-ly employed workers, self-employed persons and cer-tain types of students. Its main goal is to compensatefor lost income and for medical expenses related toillness or injury connected with work or study.

There are three types of benefits under this in-surance scheme: (1) benefits equivalent to thoseprovided under health insurance, (2) benefits similarto basic and ATP pension, and (3) unique benefits like

Apart from social insurance benefits forpersonal assistant needs, means-testedPAS are provided by the local govern-ments, according to the Social Service Actof 1982.

death benefits which is an allowanca for funeralcosts."

2. Social Welfare

Apart from social insurance benefits for personalassistant needs, means-tested PAS are provided bythe local governments, according to the Social ServiceAct of 1982. Like the Health and Medical Service Actthis Act takes the form of a goal-oriented law, underwhich the municipalities are charged with theresponsibility to provide different kinds of social ser-vices to their population but on the other hand havegreat discretion to design their programs accordingto their own needs. According to Section 1 of the Actthe overall aim of social service is:

'Public social services are to be established onthe basis of democracy and solidarity, with aview to promoting economic and socialsecurity, equality of life conditions and activeparticipation in the life of the community.

With due consideration for the responsibilityof the individual for his own social situationand that of others, social services are to beaimed at liberating and developing the innateresources of individuals and groups.

Social service activities are to be based onrespect for the self-determination and privacyof the individual.'"

17

While these goals demonstrate a new direc-tion in social welfare legislation, thepresent Swedish personal assistancescheme has not yet changed significantlysince its beginning in the 30's.

While these goals demonstrate a new direction insocial welfare legislation, the present Swedish per-sonal assistance scheme has not yet changed sig-nificantly since its beginning in the 30's.

C. Personal Asshihmce Services with Respect toEducation &xi Employment

Since 1965 personal assistance is available fordisabled children at school age." Tasks offered arepersonal help with going to the toilet, help with lunch,taking notes, interpreters for deaf children, assis-tants for children with mental disabilities, etc.Depending on the extent of assistance need, a studentmight have his/her own assistant or share one withother kids.

The assistants are employed by the school andare free of charge to the students. The costs areshared between local and central government."

A similar program exists at the secondary anduniversity level with the difference that assistantsare employed by the community where the universityis located. These attendant services are free of chargeto the students and are provided in addition to thedisability allowance mentioned earlier."

The local governments are reimbursed by thecentral government which bears the costs."

The Work Environment Act of 1978 nowprescribes that the employer has the duty to adaptworking conditions to the needs of disabled

A wide range of technical aids are avail-able for disabled workers. A relatively newaddition among the list of accommoda-tions is personal assistance for disabledindividuals who need practical assistancein a work situation.

employees." Employers who hire disabled workersreceive subsidies from the State. In the beginning ofthe employment relationship these subsidies amountto 100% of the employment costs and gradually dis-appear over the next few years.

A wide range of technical aids are available fordisabled workers. A relatively new addition among

the list of accommodations is personal assistance fordisabled individuals who need practical assistance ina work sItuation. The person assisting may beanother employee or someone outside the firm. He orshe is employed by the employer who receives reim-bursement from the government up to the certain

In most districts PAS in form of homehelpers is available only during the weekand during regidar office hours. Serviceoutside this schedule is then only availablein the form of medical care from the homemedical services administered by the coun-ty councils.

extent." Grants from the National Board of Labor aresometimes also available.

D. Porsonal Assistance Programs:Achnkdstration and Structure

Besides the county home health service men-tioned earlier, PAS consists mainly of what is calledthe 'home helper'. or "home samaritan service." Amodest fee is charged for the service." Its initialpurpose was to serve elderly people and this agegroup of disabled persons represents still themajority of the clientele."

Home helper services are administered by themunicipal social service office located at the districtlevel. Social workers coordinate the service, assessthe applicant's need for PAS and assign assistants toconsumers.

The number of assistance hours granted variesamong districts according to the budget of theprovider agency and according to customer? needs.Since no operational guidelines govern the procedureof needs assessment, variations have been noticedamong customers with the same apparent needs."

According to the statistics, the average numberof hours per person is 3.3 per week, the upper ceilingbeing 30 to 40 hours a week in rare cases."

In most districts PAS in form of home helpers isavailable only during the week and during regularoffice hours. Service outside this schedule is then onlyavailable in the form of medical care from the homemedical services administered by the county coun-cils." Personal assistance available 24 hours outsideinstitutions is, however, available in cluster housing,described earlier as boenderservice."

The tasks of personal assistance provided byhome helper service generally consists of household

maintenance, cooking, personal hygiene, help withdressing, errands (bank, post office, etc.) laundry,taking walks and similar assistanc&I" Usually thehome helper service is confined to the home of thedisabled person.

In addition a few communities have recentlystarted escort services, desigcted to meet the needs ofthose customers who need help outside their homeswhile shopping or during leisure time. This service islimited for users with more severe disabilities andonly available for a few days a month.'" It also haste be applied for several days in advance.

Another more recent reform is the patrol serviceoffered by some municiptlities during night hoursand on weekends. The patrol, a staff of usually twohelpers, visits consumers on a pre-arranged scheduleand helps with going to bed and prepare for the night.They are also on call for emergency situation&

Assistants of the home helper service areemployed by the municipality and although most areunionizedm, they are paid the lowest municipalwagesm, due to the fact that the level of profes-sionalization is relatively low"4. About 80-90% of theassistants are females, usually middle-aged, whoseemployment background is as housewives. Only 7%worked on a full time basis in 1982. About 14% of allassistants were relatives who are employed by thelocal government providing assistance to their dis-abled family member.'"

While the trend towards full-time employmenthas increased in the 80's, the numbers of familymembers gainfully employed as an assistant to theirrelative has been described as decreasing. An ex-planation is seen in the demands by the unions formore professionalization and higher salary.'"

E. Evokrtion of the Swedish System of PersonalAssistance Services

In Sweden the need for personal assistance dueto disability is considered in every field of daily living.Both the social insurance system and the welfarescheme entail provisions for PAS.

Personal assistance is clearly separated frommedical treatment, a division which supports the ILconcept. "7

In Sweden the need for personal assistancedue to disability is considered in every fieldof daily living. Both the social insurancesystem and the welfare scheme entailprovisions for PAS.

18 24

Families with disabled children and older dis-abled members are supported by provisions withinthe social insurance system as well as by themunicipal welfare system. Thus the Swedish systemrecognizes that PAS are PAS even if they areprovided by family members and that these peopledeserve to be compensated. It reflects an awareness

One of the most important features of theSwedish PAS system seems to be that dis-abled persons are encouraged to be gainful-ly employed, since PAS is available at workand the home helper service does not ex-clude gainfully employed disabled per-sons.

of the Swedish Government that providing PAS on avoluntary basis through family ties, substantiallyreduces the family's earning capacity.

One of the most important features of theSwedish PAS system seems to be that disabled per-sons are encouraged to be gainfully employed, sincePAS is available at work and the home helper servicedoes not exclude gainfully employed disabled per-sons.

However, the choices for persons with severedisabilities are still very limited. Neither the dis-ability allowance nor the PAS provided by the com-munities cover the needs of those disabled personswho cannot cope with a couple of hours assistance aweek. The fact that public help is mainly unavailableduring weekends and outside regular office hours hassignificant implications for persons with more severedisabilities. They are left with the choice betweenfamily support, boenderservice and institutions. Inthis regard it may be interesting to note that amongthe group of elderly disabled persons who have movedinto an institution, the average amount of assistancethey received shortly before, was three hours a day."'Thus, it seems that most PAS are not designed tofunction as a true alternative to institutionalization,but rather as a means to delay the date of in-stitutionalization.

Another problem with regard to the independentliving concept is the organization of the home helperservice. In =Arad to the principles of 'respect forself-determination" and "privacy of the individual' aslaid down in the Social Service Act of 1 982, consumershave no influence on the decision as to who is goingto be their assistant, and they are not in the positionof an employer towards their attendants. The highturnover rate among attendants is one of the most

frequent complaints of disabled consumers.

Currently, Swedish social service prcgrams arecharacterized by a trend towards professionalism,promoted by the unions who have interest in improv-ing the status and salary of personal assistantworkers."' While some disability organizations sup-port the union's demand for more professionalizationof home helper services in hope of a better servicequality, others view this trend with more skepticism.As descrthed above, from the IL perspective, a highdegree of professionalization of PAS is fraught withthe danger of paternalism.

Apart from their agreement with the demand foran increase of assistant wages, members of um seethis as an obstacle to more consumer directed per-sonal assistance."'" The term "home samaritans', fre-quently used for home helpers, is seen as anindication of such paternalism. Another indication ofpaternalism is seen in some of the new experimentsundertaken by some of the communities in recentyears. For example, the introduction of assistantteams, which in Stockholm consists of groups of fourto five. They are provided with an apartment by thecity in order to have a place for meetings, meals andassigning the daily tasks to each other at a morningmeeting. The underlying concept is to improve theirworking conditions. Some users are dissatisfied withthis solution, because, apart from having no inputinto the decision who is going to perform their per-sonal assistance, they fear that details about theirprivate lives will be divulged.'"

Another experiment of professionalization whichhas been criticized as paternalistic is that more andmore social service offices charge their assistantworkers with the task to "activate", consumers,meaning, to motivate them to do as much as possibleon their own. For instance the worker will dust offtheupper corner of a picture on a wall and will "activate"the consumer to do the part which can be reachedfrom the wheelchair level.lu Users, who might be ableto perform these tasks but need more time and energythan a non-disabled person, have criticized that this

A female consumer of boenderservice ex-pressed her dilemma this way: 'It is onlyafter I moved to boendenervice that I nolonger have control over which men entermy bedroom."

deprives them of the choice on how to spend theirenergy. Time and energy they might rather want touse for employment., for example.

19

25

A third example of these kinds of experiments isa decision by the Stockholm social service on*prohibiting assistants from buying alcoholicbeverages for their customers,"3

Although in some cases those experiments mightbe sound, they give reason to believe that thecriticism against professionalization of Swedish PASis justified.

In this respect Sweden's home helper service doesnot meet the IL concept of consumer directed per-sonal assistance. Furthermore, it does net complywith the IL principles laid down in the Social ServiceAct of 1982. While one might argue that legal reformsalways require a couple of years before changes areimplemented, the new trend of professionalizationwith the PAS seem to take the opposite direction.

Both, law and administration offer few choices for

Ii AIL

20

persons with personal assistance needs that exceedthe average amount of service. The disability al-lowance might be efficient for the lower fees of homehelper service, but will not cover the costs of severalhours daily assistance."'

Clearly there is a lack of con sumer involvementas a group and as individualsin Swedish PAS. Thearea where this lack is felt most is in the assignmentof assistanth and the high turnover rates among staffmembers."3

Since PAS involves intimate assistance and closesocial relationship during a large part of the service,fundamental privacy interests of the consumer areinvolved. A Female consumer of boenderservice ex-pressed her dilemma this way: "It is only after Imoved to boenderservice that I no longer have controlover which men enter my bedroom."

a

Unhice Sweden, the United States does not havea comprehensive and strongly centralized socialsecurity and welfare system. Rather, viewed by anoutsider, the U.S. appears to have a labyrinth ofdiverse programs instead of a system. Private andpublic insurance, self help groups, private and publicservices, federal, state and community :yrograms andmore constitute what is called the 'social net' of theUnited States.

As described in Chapter I., the independent livingmovement from the beginning has been concernedwith civil rights and social benefits. Therefore, PASin the United States have to be viewed in this =text.While the main focus will be on social security andwelfare law, a brief insight into antidiscriminationlaw relating to disability will also be given.

A. Attidbahnhuticm Law and the Right to theLead Restrictive Envtorenent

In the early 1970's when disabled persons soughtprotections similar to those the civil rights movementhad secured for racial and ethnic minorities andwomen, Congress enacted a wide array of an-tidiscrimination laws related to disability."' Besidespreluliting discrimination, most of these laws alsoprovide for and create programs of services for dis-abled persons. Congress considered both nondis-crimination as well as the provision of variousservices essential for equal opportunity and full par-ticipation of disabled people in society.

In the early 1970's when disabled personssought protections similar to those the civilrights movement had secured for racialand ethnic minorities and women, Con-gress enacted a wide array of an-tidiscrimination laws related to disability.

Thus, for instance, The Developmental Dis-abilities Assistance and Bill cf Rights Aces wasenacted. It deals with Federal- State grant programsto assist and encourage States to improve care andtraining for developmentally disabled citizens.'" Inaddition to mandating delivery of various services,the act also contains a Till of Rights" designed toprotect and advocate the rights of these developmen-tally disabled children and adults. With respect to fullparticipation in society, the declaration that disabledpersons have "a right to appropriate treatment, ser-vices and habilitation' that 'maximize the develop-mental potential of the person...(and are) provided inthe setting that is least restrictive of the person'spersonal Itherty"° is essential.

In several other state and federal statutes theconcept of least restrictive environment" has beenincorporated, such as the Federul Education for AllHandkapped Children Act of 19751" concerned withequal educational opportunities for disabledchildren, which requires States to assure that dis-abled children are educated in the least restrictiveenvironment. The phrase "least restrictive environ-ment" has been defined as a setting in which disabledchildren are educated with nonclisabled children tothe maximum extent possible.'"

An example of a state statute is The Lanterman-Petris-Short (LPS) Act passed by the CaliforniaLegislature in 1967, designed to define and protectthe rights of people with mental disabilities, lateramended to more broadly address developmentallydisabled people. It prohibits discrimination andprovides "(A) right to treatment and habilitative ser-vices...(underl least restrictive conditions".123 Todaymost States have enacted similar Statutes and *leastrestlictive environment" has become a catch phrasefor community-based facilities among disability ad-vocates. Several courts interpreted the least restric-tive environment" doctrine as a civil right for

21

27

institutionalized disabled persons to receive com-munity-based assistance services1" based onstatutory or constitutional provisions.

The optimism created by those early courtdecisions, however, has been eroded by two SupremeCourt decisions and the subsequent prevailingclimate of judicial restraint and deference to profes-sional judgement

While deinstitutionalization led to a par-tial closure of institutions and legislativeprogrammatic commitments todeinstitutionalization, it was not accom-panied by a corresponding development ofadequate community serviats which wouldfacilitate independent living situations forthe (mentally) disable&

In Pennhurst 'f's the Court, held that the Bill ofRights a the DDA does not establish a substantiveright to communit7-based treatment for developmen-tally disabled persons. It interpreted the Bill ofRights sections as a mere congressional preferencefor deinstitutionalization. Similarly the Court inYoungberg v. Ronseom held that sce in general "thestate is under no constitutional duty to provide sub-stantive services for those within its bordere", aninstitutionalized disabled person has wily narrowconstitutional rights to "minimal adequate train-ingfi.126 The interpretation of what constituted ade-guide training was treated with judicial deferenceand left to professional expertise.

Since these decisions, few courts have found thatcommunity-based services were required as a matterof law. Only if there was professional consensus thatinstitutional confinement was inappropriate, didcourts order deinstitutionalized treatment.'" Othercourts found no basis at all for a constitutional rightto a least restrictive envircoment.'" With regard tostatutory least restiictive alternative* provisions,increasingly courts held, similar to the SupremeCourt's Pennhurst I decision, that they do not containenforceable rights to community-based assistanceservices.13'

While deinstitutionalization led to a partialclosure of institutions and legislative programmaticcommitments to deinstitutionalization, it was notaccompanied by a corresponding development of ade-quate community services which would facilitate in-dependent living situations for the (mentally)disabled.'"

22

A similar process took place with the Centers forIndependent Living, mentioned earlier. Thesecenters were legally acknowledged by Congress in the1978 Amendment of the Rehabilitation Act ue Again,with this statute, Congress passed a programmaticcommitment to the principles of normalization andindependent living for disabled Americans. WithTitle VIM of the Rehabilitation Act of 19731", Con-gress established a four-part program for moreseverely disabled persons. Part A of Title VII of theRehabilitation Act authorized payments for inde-pendent living services that are provided under ap-propriate State plans. Part B authorized a grantprogram for the establishment and operation of Inde-pendent Living Centers that rovide among severalother PAS. Part C established funds for independentliving services for elderly, blind individuals. Thebasic funds authorized under Part B of litle VII werehelpful in setting up about 160 Independent LivingCenters in the U.S.,"

However, the Rehabilitation Act has never beenthe main federal fimding source for PAS, even thoughTitle VIII, is one of the few federal statutoryprovisions that menticeis attendant services explicit-ly as one of the services to be provided. One explana-tion is that the funding has always been minusculein comparison to federal money that has been usedfor institutionalized care." However, the servicesthat were to be provided under PartA of the programwere funded for the first time only in 1984, more thansix years after it was enacted, the amount ap-propriated being $5 million.'"

B. Social Securfty and Welfare Lawkl the (Mod States

U.S. social security and welfare law in themodern sense is relatively young. It begins with theenactment of the Social Security Act in 1935, whenthe Depression made poverty a national problem, andled to the New Deal era. Since then the emphasis ofAmerica's social security policy has been on incomemaintenance through programs 'similar to those car-ried out in European countriesOSDI (Old Age Sur-vivors and Disability Insurance), UnemploymentInsurance, Workers' Compensationor else means-tested programs hie AFDC (Aid to Families withDependent Children). All these programs aredesigned to substitute benefits for lop income.

Health and social services have long been con-sidered outside the public domain. Thus, there is nocentralized national health insurance with man-datory coverage or a strong social service system withrespect to child care, or income support servicos.Nevertheless 95% of the population is said to becovered to some extent by public or private health

insurance programs.'" The health programs and so-cial services are largely in the hands of the privatesect/m.13V

There are, however, two large public programscalk'. 'Medicare and I'Medicaid*--providing medi-cal services to a considerable portion of thepopulation. Medicare*" is a federal program provid-ing health insurance for persons over 65 years anddisabled people who are eligible for retirementbenefits or disability benefits whereas Medicaid"' is

eit means-tested joint federal-state program designedto provide medical assistance and services to thenee4y."2

1. Income Maintenance ProgramsFor Disabled Anxtricans

The concentration on income maintenance as themajor focus of public social security and welfareprograms has been a determining factor for thedevelopment of disability policy in the United Statesas well. In general, the programs dealing with dis-ability provide income substitutes but do not coverdisability-related expenses, except those of the mostbasic medical sort.

a. Worker's CompensationWorker's compensation, one of the first forms of

social insurance in the United States"' provides cashbenefits and medical care when workers are injuredin connection with their job. The benefits are usuallycalculated as a percentage of weekly earnings at thetime of accident or death.'" While a number of stateprograms take marital status and the number ofdependent children into account, and in most lawsadditional benefits are allowed for compensation of'disfigurement*, only a few programs providebenefits for necessary attendant services."5

b. Social Security Disability Benefits

Social Security Disability Benefits (SSDI)provided for by the federal Disability Insurance (partof OSDI, supra) are similarly related to lost earningcapacity. The amount of a disabled worker's benefitis computed on the basis of hisiher working record.The benefits include spouse's benefits, child's andsurvivor's benefits but do not afford disability al-lowances for needed personal absistance services."5

c. Federal Supplement SecurityIncome

The same is true for another mgjor disabilityprogram, the Federal Supplemental Security Income(S8I).14758I provides a minimum guarantee:I incomefor disabled persons under 65 who meet a means test,have had little or no working experience and are

uneble to engage in substantial gainftd activity. As 111986, the amotmt of monthly payments were up to amaximum of $325 to $488 for a qualifying disabledperson with a spouse. The average payment in 1986was estimated to be $199.1" Although all but twoStates supplement these federal payments"9 and theStates have wide discretion in their optional sup-plementation level. In no state is SSI a signif :antfunding source for disability-related personal assis-tance needs.'"

The concentration on income maintenanceas the major focus ofpublic social securityand welfare pmgrams has been a deter-mining factor for the development of dis-ability policy in the United States as well.

d. Veteran's CompensationThe only mgjor federal program providing for

personal assistance services in addition to incomemaintenance is the Veteran's Compensation Pro-gram for Service-Connected Disabilities."' As inmost countries with social security systems, thisgroup of disabled persons has a privileged status andthose qualifying are entitled to a wide array ofprograms and benefits. In addition to monthly cashpayments as compensation for a disability resultingfrom military duty, veterans in the United Statesreceive an *Aid and Attendance Allowance* ifthey areconsidered severely disabled. Compensation pay-ments in 1986 ranged from $66 a month for a 10%-disability to $1,295 a month for a total disability)."However, compensation and allowance together maynot exceed a maxim= of $3,697 a month.'5 In 1984the veterans' administration paid 8,493 persons$101,036,520 in *Aid and Attendance Allowances*.Some 6,860 individuals received an amount of $906per month. The remaining 1,633 people, who wereconsidered being at risk of institutionalization,received $1,350 per month.'"

While Veteran's Compensation enables mostbeneficiaries to live at home and pay their own atten-dants, the situation is different for the mgjority of thedisabled population who have to rely on SSDI or NImoney.

In establishing SSDI and SSI the federal govern-ment acknowledged its responsibility to provide forthe basic living needs of disabled pereons. Theprograms are not, however, designed to allow dis-abled persons to live independently.

2. Federal Legislation Providing FundingSources kw Personal Assistance Services

In addition to the Veterans' Aid and AttendanceAllowance, there are currently four major Federalprograms which fund personal usistpnce services ina broader sense: 1) Title XVIil Medicara) of theSocial Security Act; 2) Title XII (Medicaid) of theSocial Security Act; 3) Title XX (Social Service BlockGrant) of the Social Security Act., and 4) Title III ofthe Older Arnerkan Act.I55 In addition, there areseveral state or local programs providing funds forPAS. In general, states utilize federal funding forthese programs, too.'"

In establishing SSDI and SSI the federalgovernment acknowledged its respon-sibility to provide for the basic living needsof disabled persons. The programs are not,however, designed to allow disabled per-sons to live independently.

a. Medicare (Title XVIII of the SocialSecurity Act)

This health insurance for retired and disabledpersons who have been part of the work force includestwo related contributory health insurance plans:Hospital insurance (HI) and a voluntary Program ofsupplementary medical insurance (SMI). Both in-surance plans provide for home health services onlyif the disabled person is homebound, is under thesupervision of a physician, and only if the service isfurnished by a home health agency, or subcontractorsofa home health agency who work according to a planestablished and periodically reviewed by aphysician.'"

Furnished services are subject to the conditionthat they are confined to the residence of therecipient.'" In addition, the medical character ofthese home services is emphasized by specific ex-clusions.

As a general principle, any service that would notbe covered if furnished to a hospitalized patient isexcluded from coverage. Explicitly food service arran-gements (such as meals-on-wheels), household main-tenance services and transportation services areexcluded.'" Services which are not consideredreasonable and necessary for the treatment of illnessor injury are not covered by Medicare and formanother general exception)" If home health servicesare provided by 'immediate family members(spouse, child, brother, sister, brother-in-law, etc.),there will be no reimbursement by the insurance.'"

24

Thus, Medicare home health services operateaccording to a strict medical model. Many of the abovementioned tasks of PAS are excluded and, since thephysician and skilled nursing agency are vested withbroad authority, there is no real avenue for consumerinvolvement.

Although since 1981 home health visits are notlimited to a specific number of visits per year,Medicare has not become a major source for (longterm) home health care. In 1982 about 1,171,000people (93% of whom were aged) received homehealth services under Medicare. The average numberof visits were 26.3 in that year. Mt

b. Medicaid and Medicaid Waivers

(1) Medicaid (Title XIX of the SocialSecurity Act)

Medicaid was created as a federal-state means-tested entitlement program to provide medical assis-tance to the poor. While the federal governmentmandates that certain services be offeredamongthem in-home-suppcit servicesstates administerthe program and have wide discretion with respect toincome eligibility levels, scope and duration ofbenefits, the availability of services, delivery andreimbursement methods, etc.'"

In most states eligibility for Medicaid is linked toexisting cash welfare programs, such as Aid toFamilies with Dependent Children (AFDC) and Sup-plementary Security Income (SSD. Some states haveless restrictive eligibility criteria.'"

The discretionary aspect of laws governingMedicaid quickly led to considerable variationsamong the states, which is still evident today. As aconsequence, Medicaid is not a uniform national pro-gram but different state programs with wide varia-tions and only some common elements. The programis financed jointly by federal and state funds.

The largest portion of Medicaid funds go to hospi-tal, nursing home and institutional services such asIntermediate Care Facilities (ICE) for mentally dis-abled persons, Skilled Nursing Facilities (SNF),etc.'"

Medicaid Inhome services are characterized bythe medical model, but the strings are much looserthan under Medicare regulations. According to Medi-caid law, services must be prescribed by a physicianas part of a written treatment plan. They can beprovided as home health aid service by a certifiedhome health agency or as personal care service pro-vided by 1) "an individual who is: qualified to providethe service; 2) supervised by a registered nurse; and3) not a member of the recipienes familr".

:3.)

Some states and cities have found innova-tive ways to work within this medicalmodel and still involve consumer control.In Denver, New York City and Bostonseveral Centers for Independent Livinghave been designated home health agen-cies, who allow their consumers to hire andtrain their assistants.

Some states and cities have found innovativeways to work within this medical model and stillinvolve consumer control. In Denver, New York Cityand Boston several Centers for Independent Livinghave been designated home health agencies, whoallow their consumers to hire and train their assis-tants. Other areas loosen the supervision require-ment by having a nurse do an evaluation every threeor six months.1'7

Federal funding for Medicaid is open-ended.States are reimbursed by the federal government forthe cost of providing services to eligible beneficiaries.Each state's financial participation formula is estab-lished based on its per-capita income. States in turnreimburse providers in the private sector throughthird party vendor payment.'" Thus, in most cases,disabled persons receiving in-home services underMedicaid do not have financial control over the ser-vices they receive. The providers have more incentiveto satisfy the state's interests than those of tLa con-sumer. In those areas, however, where IndependentLiving Programs have been designated home healthagencies, some centers pay the assistant's wagesdirectly to the consumer who then pays hisiher assis-tant 169

(2) Medicaid Waivers (Section 2176 ofthe Omnibus Budget Reconciliation Actof 1981)

In 1981 Congress paved the way for pilot ac-tivities in the field of community-based service inorder to decrease the costs for institutional services.By enacting Section 2176, the Home and Community-Based Services Medicaid Waiver Provision of theOmnibus Budget Reconciliation Actm, Congresscreated an incentive for states to finance community-based services for people who otherwise would runthe risk of being institutionalize& States can applyfor a waiver of the Medicaid rules in order to delivera variety of new servicesincluding LASfor a nar-rowly defined population group, and with a moreliberal eligibility formula.'"

While many states have applied for such waiversand a great number of demonstration projetts havebeen established, the potential of the Medicaid

waiver program is limited by the federal requirementthat the new services be no more expensive thaninstitutional care. Furthermore, waiver grants arelimited to a period of three years.'"

Responding to pressure, Congress has changedthe rule not to spend on any individual more than theaverage cost of a nursing home. Disability advocatessuccessfully argued that such a regulation dis-criminates against persons with extensive dis-abilities, because most of the people in nursing homesare older people with fewer service needs. By enact-ing the Qmsolidated Budget Reconciliation Act in1985 Congress established a new two-tiered limit forpeople with different levels of service needs. On theother hand, however, it has been reported thatwaivers for more comprehensive community-basedservices rarely receive federal approval anymore.Y'

Congress created an incentive for states tofinance community-based services forpeople who otherwise would run the risk ofbeing institutionalize& States can applyfor a waiver of the Medicaid rules in orderto deliver a variety of new servicesinclud-ing PASfor a narrowly defined popula-tion group, and with a more liberaleligibility formula.

c. Social Service Block Grant(formerly Title X11)

Title XX of the Social Security Actm was a federalgrant program for states' social service programs indifferent areas, one of which was in-home supportservices for people at risk of institutionalization. In1981 it was converted into a block grant in order togive states more latitude in using the funds. UnderSSBG regulations states have wide discretion withrespect to what kind of services be established anddetermining eligibility requirements. Most statesprovide some sort of attendant services using SSBGfunds in combination with Medicaid fulds for 'per-sonal care".'" But with the exception of California"'most states do provide only limited attendant ser-vices with SSBG money. This is a result of the factthat the funding is not open-ended and the level hasbeen raised only slightlyfrom $2.57 billion in 1976to $2.7 billion for 1984, 1985 and 1986.'"

The program is administered by state and countydepartments with social workers doing the needsassessment, evaluation, etc. Medical personnel playno role in this program.'" Thus, the =Ajar advantage

25 31

of SSBG funding over Medicaid and Medicare is thatservices are not tied to a medical modeL

d. Me I I I of the Older American ActWith the Older American Act., Congress enacted

a social welfare program for aged Americans whichcomprises a wide array of social and medical services.

Title III of the act is designed to offer personalassistance services 133 either afigmenting existingones or creating new attendant services. Unlike otherwelfare programslike SSBG and MedicaidTitle111 is not a means tested program. However, sincethere is a federal ceiling for funding, local Area Agen-cies on Aging are encouraged by federal regulationsto address low-income people over 60 years old.

States meet federal funding requirements whenthey can prove that they spend a portion of thefunding on special services, ble attendant services,or that these services are already available throughsome other sourses. Thus, in general, states combineTitle III money with SSGB and Medicaid funding.Unlike SSBG or Medicaid, Title III in additionprovides for meals-on-wheels services. Another ad-vantage of this program is that it actually includesservices for older persons with all types of disabilities.Thus the service offers attendants, readers, inter-preters and companions.17'

C. Personal Assistmce with Respect toEducation old Employment

1. Personal Assistance Services at 3chool

Education in the United States is primarily theresponsibility of states and local communities. Forthis reason there is no significant federal program ondisability-related services for students. There are,however, two federal laws which have some influencein this area.

Section 504 of the Rehabilitation Act and therelated regulations's* prohibit disability-based dis-crimination in any program supported by federalfunds. Since every state accepts federal money for itseducation programs, every state is thus prohthitedfrom discriminating against disabled students. Theregulations issued to implement Section 504 requirefund recipients to undertake *reasonable accom-modations" in order to eliminate discrimination.'"

Under the Education for All HandicappedChildren Act (EliA), states that receive federal aidhave to aosure the provision of Iree, appropriate,public education" to all disabled children in the leastrestrictive environment. If necessary, disabledchildren must be provided with especial educationand related services" at no cost to the parents.'"

26

Both phrases *reasonable accommodations" and'related servials" embody the same concept. In-dividualization of opportunities and antidiscrimina-tion efforts for disabled students are not possiblewithout some modifications. Adjustments and sup-portive services in addition to an educational settingdesigned to meet nondisabled individuals' needs arerequired. More commonly, these doctrines have beenapplied to the need for technical aid, occupationaltherapy, school health services and transportation. 153Some personal assistance services, however, havebeen acknowledged under these laws; such as inter-preters for sign language.'"

Except for a few states such as Mas-sachusetts and Ohio, which have estab-lished attendant services for disabledemployees, there are few special PASprograms for disabled persons at work.

In passing these laws, Congress recognized thataccommodations and related services might involvesome costs and established limited programs to helpbear them. Section 302 of the Rehabilitation Act, forexample, authorizes grants to state units to providetechnical and persor.ial assistance (such as inter-preters for sign language) in order to comply withSection 504.1" It has also has been reported thatsection 110 of the Rehabilitation Act provides somefunds for attendant services for vocational rehabilita-tion clients, which can be used if other sources areunavailable.'"

With PL 98-199 (Post-secondary Education Pro-gram for Handicapped Persons) Congress authorizeddemonstration grant monies to support interpreting,reading, note taking, tutoring, counseling and relatedservices for post-secondary disabled students. Twen-ty-one projects were supported with these grants in1984, while priority was given to four regionalprograms for deaf students.'"

2. Personal Assistance Services at WorkExcept for a few states such as Massachusetts

and Ohio, which have established attendant servicfor disabled employees1", there are few special PA-programs for disabled persons at work.

Section 504 of the Rehabilitation Act does ofcourse apply to employers receiving federal funds.Similar, mor, far reaching provisions exist for federalcontractors (Section 503) and the federal governmentitself (Section 501), both of which are subject to af-firmative action duties.

3

However, the obligation to provide to reasonableaccommodation is na unlimited. More than in thearea of educationwhich is considered to be a quasifundamental rightl"extensive coots may be used asan argument to escape this duty in the context ofemployment.'" Furthermore, the large number ofemployen who do not receive anf kind of federalmoney are not prohibited from discriminatingagainst disabled workers.

Disabled persons who want to get into the workforce, thus, have difficulties finding and carrying outa job if they need PAS to do so.

A national survey on PAS programs in theU.S. conducted under supervision of theWorld Institute on Disability (WID) reportsthat only 16 programs (10% of all theprograms identified) are aimed at allow-ing recipients to work, or emphasize wor*as a goal, while still providing PAS.

Most PAS programs and funding sources are notavailable to persons with income above the povertylevel, which in 1986 was $5,272 a year for a singlepersonun. A national survey on PAS programs in theU.S. conducted under supervision of the World In-stitute on Disability (WID) reports that only 16programs (10% of all the programs identified) areaimed at allowing recipients to work, or emphasizework as a goal, while still providing PAS.

D. Personal Assistance Programs:Admbistration and Structure

Personal assistance programs in the UnitedStates vary widely from state to state. The scope ofservices provided depends on which funds are util-ized, whether the personal assistance is furnished byprivate or public providers, which population groupof disabled people is addressed, etc.

A national survey of personal assistanceprograms was conducted by WID in 1985/1986. Sinceit is presently the only national report on PAS in theUnited States it will be used as a basis for a descrip-tion of PA programs. The survey identified 173 PASprograms in the United States, of which 154 could beincluded in the results of the program. 1 n For variousreasons, however, programs exclusively for peoplewith mental disaWlities and/or people with intellec-tual disabilities were excluded from the survey.1'2

1. Funding Sources and Dissemhiation.The survey shows that currently each state has

developed some sort of PAS program: on the average

there are about three programs per state," Whilemore than a third of the programs are funded byMedicaid (including Medicaid Waivers), somewhatless than a quarter are funded by SSBG monies.'"

Title III of the Older American Act is the solefederal funding source for 10% of the programs andTitle VIIB of the Rehabilitation Act fluids only 0.6%of the programs On the other hand 22% of theprograms are financed entirely by state or localmonies.'" Only 12% of the programs were reportedto function on a combination of federal sources.'"Thus, the =Or funding sources for PA programs areMedicaid, SSBG and state or local funds. Federalfunds accounted for 52% of the expel, diture on PAS.'"

2. Goals, Administration, and StructureMost programs (45%) are administered by state

agencies with jurisdiction over social, health andwelfare affairs. Others are administered by the StateAgencies on Aging (27%), medical assistance orhealth departments (17%) and a few are ad-ministered directly by Independent Living Centers(in Maine, Nevada, North Carolina, and SouthDakota).""

While almost all programs are directed atpreventing institutionalization, only 10% (16programs) are aimed at allowing their consumers toworkm, although 72% of the programs serve disabledconsumers of working age."'

Eligibility for services varies from program toprogram, based on such factors as age, income, dis-ability type and employment status. Most programs(88%) serve older persons over 60 or 65 years old.Only 41% of the programs serve consumers of all ageswith children being the most underserved consumergroup. (41%)"2 More than half of the programs (58%)serve consumers of all types ofdisability, while 10%serve physically disabled individuals exclusively.2"

Commonly, programs render services to poor per-sons only. While 50% of the programs either utilizethe poverty level as an income limit or link eligibilitywith entitlement programs (such as BSI, SSD! orMedicaid, whose income eligibility limits are near orbelow the poverty level), only 23% of the programsaccept consumers with income above twice the pover-ty-level.204

In addition, other eligibility criteria are: risk ofinstitutionalization (57%), physician's order (42%),family help unavailable (22%) and other factors.

The scope of tasks included mostly personal ser-vices such as bathing, dressing, hygiene and groom-ing, and household maintenance and related services.The survey shows, however, that help with catheter

27 3

management or injections and medication as well asinterpreters and readers are less available.=

Although more than half of the programs arereported to have some sort of respite service, manyprogram rules require that providers be employees ofhome health agencies which provide services onlyfrom 9 to 5 on weekday& Thus only 65% of theprograms provide services which are available 24hours a day. Another 12% of the programs offerservices earlier than 9 a.m. or later than 5 p.m. butfewer than 24 hours a day.= Since many providersare private agencies, often free-market rules deter-mine the availability of services. In less populousareas with little competition, the tendency is thatproviders restrict the service to regular workinghours.=

The overview on federal funding sourcesfor PAS shows that there is no comprehen-sive federal policy on community-basedPAS. A labyrinth of funding sources exist,most of which perpetuate a medical ap-proach to attendant services. Consequent-ly, the major funding sources, such asMedicaid, overemphasize institutionaland acute care.

Only 28% of the surveyed programs do not havea service ceiling with respect to hours of servicesavailable to one consumer.= Thus, most of theprograms do not offer 24 hour services. Hour ceilingsrange from 3 to 67 per week, with an average of 29hours.=

There are three models of delivery methods, withittendants divided into three groups: (1) Individualproviders (IP), (2) those who work for contract agen-cies (contract-model), and (3) those who work fitcounty or municipal governments (county-model).2"

Most commonly, programs utilize the contractmodel (78%); 50% of the prograrns are reported to usethe IP-model and only 28% use governmentemployees.= Many programs, however, use morethan one provider model. These models differ accord-ing to consumer involvement and wage or reimburse-ment rate. According to WID's survey, the IP modelallows the most consumer involvement in terms ofcontrol over schedule, choice of the assistant andwhich tasks are furnished at what time.= However,consumers must have the ability to manage their ownattendants, and IP attendants are commonly paid ator very close to minimum wage. The average hourlywage at the time of the survey was

28

Many IP attendants also do not receive anybenefits. In contrast, attendants of the county-modelhave the highest pay and benefits, with an averagehourly wage of $4.77,2" tait the model is least open tothe concept of independent living and =sumer con-trol. These programs rarely allow consumers to train,hire and fire, or pay their assistants.212

Contract agency workers are reported to receivean average hourly pay of $4.71 but far fewer benefitsthan government employees.= Most of the workersare home health aides or homemakers of a registeredhome health agency, while IP workers may belicensed practical nurses, as well as relatives= orstudents.

Government workers are used as PA providersonly when there is no contract provider. WID expectstheir number to decline owing to current federalpolicies which encourage private enterprise to takeover government service.=

E. Evaluation of Personal AssMance Serviceshl the United States

The overview on federal funding sources for PASshows that there is no comprehensive federal policyon community-based PAS. A labyrinth of fundingsources exist, most of which perpetuate a medicalapproach to attendant services. Consequently, themajor funding sources, such as Medicaid, overem-phasize institutional and acute care.=

PA programs that exist are funded by a widevariety of federal and non-federal funds with widediscrepancies among the states with respect to theirservice capacity. Some states have developed theirown very comprehensive attendant service programs,such as California's In home Supportive Service Pro-gram=. Others do not consider it a policy issue at all.In addition, programs differ according to eligibilitycriteria. The WID survey shows that 59% of theprograms exclude certain age groups, 44% excludecertain types of disabilities and 50% of the programsdo not serve people with income above the poverty

Another shortcoming is that many programs donot allow family members to be paid attendants.

Another shortcoming is that manyprograms do not allow family members tobe paid attendants. Many pmgrams as-sume that family members provide PAS ona voluntary basis. But in reality more andmore families cannot afford to do this kindof work.

Many programs assume that family members pro-vide PAS on a voluntary basis. But in reality moreand more families cannot afford to do this kind ofwork.

The separation of the areas of funding, ad-ministration and organisation of the programs, led toa diverse array of PA programs. This makes it dif-ficult to analyze who directs PAS policy in the UnitedStates. Some programs are financed and ad-ministered by the federal government, some arefinanced federally or jointly, but administered by thestates and others are entirely state or local programs.In variation the private sector is involved as

well, and many programs actually are financed byseveral funding sources.

Delivery model, the scope of services rendered, orthe population group served, thus depend cm a mix-ture of these factors: funding source, administration,delivery agency and more.

This interplay of federal and state policy orprivate and public sector allowed innovative modelsof PAS to be established. At the same time, however,it seems to prevent the development of a coin en-sive national policy which has the capacity to addressa 'national prob1em".2"

-1,11°`111a.

29 )

3ES1 COPY AVAILABLE

ter-

.4t

,..t*:-

The German social security system dates backover a hundred years. It is similar to Sweden's sys-tem, in that it is equally comprehensive. It coversnearly the entire population. But liable Sweden'ssystem, the German system is not entirely tax-based.And although most of the laws governing the systemare federal, the system itself is not administered bycentralized government agencies.

The German social security system datesback over a hundred years. It is similar toSweden's system, in that it is equally com-prehensive.

A. Social Security aid Wefts M West Gamow

West Germany's social 'net* can be split intothree main categories: (1) The social insurance sys-tem, which is compulsory and based on contributions,entails (a) health insurance; (b) accident insurance(similar to Worker's Compensation in the UnitedStates) for work-related injuries; (c) the retirementand disability-insurance; and (d) unemployment in-surance. (2) The second system is the social main-tenance system with compensation benefits forpersonal injury and the Jae. It is financed by federal(tax)-funds and covers a variety of benefits (healthcare, pensions etc.) for victims of war, military ser-vice, crime, vaccination victims, etc. (3) Thirdly, thewelfare system is a means-tested program for thepoor, which is similar to General Assistance in theUnited States, but which is available to needy peoplewith income below the poverty line and provides fora variety of cash and in kind benefits (such as rent,subsistence grants, health care, but also categoricalbenefits such as assistance to disabled persons, preg-nant women, etc.). It is financed by the 1.4inders" withsome additional federal grants."'

31

The insurance scheme (1), with its various socialinsurance, is run by insurance bodies whicii cameinto being in the course of historical development.When social insurance was made mandator'', al-ready-existing self-help arrangements for certainprofeasims were incorporated into the system."'

Thus the insurance funds are independently runby representatives of the insured members andemployers. Since these bodies perform governmentalfunctions, they have some sort of semi-governmentalagency status. Their umbrella organization fulfills acoordinating role and has great influence on regula-tions and legislation in this area of social securitylaw!"

The maintenance system (2) is administered byfederal and Lander agencies and the welfare program(3) is administered by Lander and county agencies.The various welfare organizations mentioned earlier,often function as contract agencies for a variety ofsocial services provided for under social insurance,social maintenance or social welfare systems.

Although the need for personal assistance owingto disability has never been acknowledged as a riskwhich must be covered by social insurance (as is thecase with illness, work-related injuries, unemploy-ment or war damages-each of the three categoriesmakes some provisions for PAS.

B. Benefits for (k1 home) Personal Assbitimce

West German law dearly distinguishes betweenhealth care and attendant care (personal assistance).Both services are furnished on an at-home basis andat hospitals or other institutions. For the purpose of

comparing West Germany with Sweden and theUnited States, health care as well as personal assis-tance services will be mentioned in so far as they arefurnished outside institutions.

West German law clearly distinguishes be-tween health care and attendant care (per-sonal assistance). Both services arefurnished on an at-home basis and athospitals or other institutions. For the pur-pose of comparing West Germany withSweden and the United States, health careas well as personal assistance services willbe mentioned in so far as they are furnishedoutside institutions.

1. Social Insurance

a. Retirement- and DisabilityInsurance

Retirement- and Disability Insurance mainlyprovides for lost income in case of disability (semi-dis-ability pension and total disability pension) and oldage (in general at age 65). The pension is based on aworking record and no special allowances for dis-ability related needs are provided. In additice topensicm benefits for the insured, as well as for spouse,child and survivors, Retirement and Disability In-surance provides for medical and vocationalrehabilitation benefits."' These benefits do not coverany sort of personal assistance services, however.

b. Health InsuranceHealth Insurance provides for various benefits

related to health care. Among them, in home healthservices are provided, if necessary, for medical treat-ment, or to prevent hospitalization. They must beprescribed by a physician and generally be furnishedby a registered nurse or a health professional.

Personal assistance services, such as feeding,dressing, hygienic tasks, are covered only as far asthey are closely connected with medical treatment.But in general these services are not covered byhealth insurance since they are considered non-health related services.=

Responding to a rising need for personal assis-tance services, however, the legislators amendedlimited personal assistance benefits to Health In-surance recently. According to the Health Reform Actof 19882" some insured disabled persons receive anadditional benefit of 25 hours of PAS a month. Thelegislatom made clear, however, that these servicesare limited to basic personal and domestic needs.Only severely disabled persons are elig%le for theseservices= and the upper ceiling for monthly servicesis 25 hours at the InfiXiMUM cost of 750 DK=

For parents of disabled children (as well as non-disabled children under 8 years of age) there are

32

additional in home health services within the systemof health insurance. In case of hospitalization of oneparent, they are eligille for household maintenanceservices if no other family member can take care ofthese tasks.=

C. Accident Insurance

Accident Insurance provides pensions, healthcare, rehabilitation and related benefits for personswho have been injured through work-related ac-tivities.= Besides medical and dental treatment,health care benefits include (nonmedical) personalassistance services.=

Eligibility criteria for personal assistance ser-vices is a certain degree of "helplessness". A personis eligible for PM if she/he is so helpless that helshecannot exist without PM. If the person is less help-less, it is up to the insurance agency's discretion ifPAS is provided."' However, the fact that a familymember performs part or all of the PM does notdetermine the injured person's degree of *helpless-ness'."'

PAS can be provided for in cash or in kind. Thelatter implies that a nurse or another 'suitable per-son* (home aid) is sent to the injured person's homeby the insurance agency.=

It is worth mentioning that the law veststhe insurance agency with authority todecide whether PAS benefits will be fur-nished in kind (at home or at institutions)or in cash.

Personal assistance allowances ranged from DM384 to DM 1531 in 1983 and since then have beenindexed annually.= The insurance agency deter-mines the allowance amount in each case, accordingto regulations issued by the umbrella organization ofAccident Insurance."'" It is also up to each insuranceagency's discretion to supplement the allowance if thecosts of necessary PM exceed the upper ceiling.'°

It is worth mentioning that the law vests theinsurance agency with authority to decide whetherPAS benefits will be furnished in kind (at home or atinstitutions) or in cash. A requirement for in-stitutionalization, however, is that the disabled per-son does not reject this form of benefit"' A surveyconducted by the insurance' umbrella organization=shows that commonly benefits are granted in cash.Accordingly in 1977/78 144 persons received home-tvised or institutionalized PM under Accidence In-surance, whereas 4,349 persons received PAallowances."'

3S

2. Social Maintenance

Similar to Accident Insurance, the Social Main-tenance system is designed to support injured per-sons who because of their injuries are disabledand/oreconomically disadvantaged" Unble Accidence In-surance, Social Maintenance covers a variety d non-work related injuries. The uukicr ones are: Injuriesincurred during military service in the former Ger-man Wehrmacht (the army of the Nazi-Regime) regu-lated by the Bundesversorgungsgeoeta BVG (FederalMaintenance Act); injuries incurred during militaryBenda of the West German army, regulated by theSoldatenversorgungsgesets (SVG Soldier's Main-tenance Act); injuries incurred during social ser-vice" whidr is regulated by the ZivildienstgesetzCMG Social Service Act% Willies resulting fromcrime"; or caused by an epidemic".

The Federal Maintenance Act is the guide whichall other laws of the social maintenance system useas a basic framework, and the benefits awarded byall the laws which apply to these instances are stand-ardized.

Eligibility for PA allowance is linked tovarious levels of 'helplessness'. There aresix levels of need for PA mnging from adaily regular need for PA (level I) with anallowance amount of DM 370 to more ex-tensive PA needs with a ceiling amount ofDM 1.835. disability matches which levelof PA need. In any case, the recipient hasto be quite 'helpless' in order to be eligiblefor these benefits.

Besides various pensions" and benefits for de-pendent spouses, children or survivors, the FederalMaintenance Act provides for perms' assistance inform of allowances.'" Eligthility for PA allowance islinked to various levels of 'helplessness'. There aresix levels of need for PA ranging from a daily regularneed for PA (level I) with an allowance amount of DM370 to more extensive PA needs with a ceiling amountof DM 1.835." disability matches which level of PAneed.251 In any case, the recipient has to be quite"helpless' in order to he eligible for these benefits.

As under Accidence Insurance law, maintenanceagencies (Versorgungslimter) have discretion to sup-plement these allowance benefits if the amountgranted does not cover the actual costs of PAS,"

In case of illness the maintenance law alsoprovides for home health services. Those services,

33

however, are desigind to prevent hospitalisatimr,thus only medical tasks and basic personal care needsare encompassed. Furthermore, the law requires thatthey be prescribed by a physician and that no familymember is alAe to perform these services."

3. Social Assistance

Social Asaistance is a means tested programwhich provides cash and in kind benefits for the poor.The Federal Social Assistance Act (Bundessozialhil-fegeseta BSHG) applies only if no other benefits areavailable or self-help cannot be reasonably re-quired."

Nevertheless, the bulk of public expenditure onPAS is financed by Social Assistance. The risingcaseload of PAS beneficiaries under Social Assis-tance" has been a problem for German welfarepolicy since at least the late 1970's.251

The Federal Social Assistance Act contains inkind and cash benefits for personal assistance ser-vices for disabled persons with various degrees ofdisability and different income levels. In any case, theperson must be so helpless that helshe cannot existwithout PA (first ci four degrees of PA need)." Dis-abled persons with more extensive need for PA(second to fourth degree) are additionally eligible fora PA allowance which ranged from DM 299 to DM812 in 1988." The income ceiling varies accordinglyfrom DM 810 plus rent costs and family subsidy (incase of marriage and children) for the first degree ofPA need to DM 2.429 plus rent costs and familysubsidy for the fourth degree"

It is up to the social welfare agency to decide onPA needs in a given case. For some disabilities, how-ever, PA need and severity of disability is assumed.An administrative regulation gives a list of dis-abilities that match the fourth degree of PA need."In these cases the highest PA allowance has to hegranted

The PA allowance does not have to be spent on'professional' PAS. The legislators' intent was to vestthese disabled persons with some financial resourcesin order to maintain the willingness of Mends orfamily members to "help out"."

The allowance is an additional benefit to in kindPA, which has to be provided by the social welfareagency.= It is up to the beneficiary whether to applyfor both benefits. However, if an individual receivesboth, the allowance amount might be curtailed downto 50%."

In addition to in kind benefit and PA allowance,the Federal Assistance Act provides for a thirdbenefit related to personal assistance services fur-

3 I.

nished by family or household members of the dis-abled person or by 'professionar assistants. Forthese attendant& the Federal Social Assistance Actprovides for benefits in the fbrm of old age insurancecontributions. With regard to family members, how-ever, this is a discretionary benefit,"

In reality only very few family members or"professional* attendants take advantage of thisbenefit because commonly they are insured at thelowest level of ad age insurance. The Supreme Ad-ministrative Court held that any old age insuranceprogram which meets the General Assistance benefitamount is sufficient."'" Such an old age insurance isnot very attractive, because the pension amountequals the lowest social welfare benefit in West Ger-many.

By law, West German disabled childrenhave to enroll in special schools for dis-abled children. In these settings theyreceive the assistance they need as relatededucational services. While sometimes ex-ceptions are made, disabled children donot have a substantial right to intaratededucation.

If the disabled person is the head of a householdin which nobody else is able to perform householdmaintenance tasks, he/she is eligible for ahomeworkeras so that other household members canbe taken care of. However, this benefit is designed asa support for the beneficiary's dependentson ashort-term basis only.

C. Personal Assistoce Program With Respectto Education ouvd Employmnt

1. EducationBy law, West German disabled children have to

enroll in special schools for disabled children. In thesesettings they receive the assistance they need asrelated educational services.

While sometimes exceptions are made, disabledchildren do not have a substantialtight to integratededucation.

In larger towns, like Hamburg, Berlin orFrankfurt several pilot projocts in the area of in-tegrated education have been implemented, modelledafter existing programs in Sweden and Denmark.

Since no school or university is obliged to accom-modate disabled students' needs, there is no public

34

West German law requires those whoemploy more than 15 persons to hire aquota of six percent disabled persons.

pommel assistance service program for students.Demonstration projects have maintained an excep-tional character."'

Some post seamdary-students, however, havefound innovative ways to finance FA needs. TheFederal Social Assistance Act contains a ratherabstract benefit called integration assistance."'Under this provision, several services or allowancesfor poor disabled persons -such as car subsidies- maybe granted. In a number of these cases social welfareagencies granted PAS for educational purposes.'"

2. Employment

West German law requires those who employmore than 15 perfume to hire a quota of six percentdisabled persone"

In order to enable disabled persons to work theemployer has to adapt job premises, and the job 1tse4as long as the accommodation costs areIreasomable.271 Accommodations include technicalaids as well as access to the work premises.Employers do not have t.z pr.:wide for personal assis-tance, though. Persorial assistancz services may beprovided by the labor k-4n/nazy through contracts withservice agencies.'"

However, few disabled individuals can apply forthese benefits since most employers do not fulfilltheir employment obligations. Every third employerin West Germany does not employ even one disabledworker. Three oat of four employers don't fulfill thesix percent quota.m Although the state givesgenerous subsidies for employers who hire disabledworkers, the =glorify prefers to pay the rather smallcompensation fee <DM 150 for each unfilled job ofthe six percent quokr4 For this reason, significantPA programs for disabled employees have never beendeveloped in West Germany.

Although the state gives generous subsidiesfor employers who hire disabled workers,the mOority prefers to pay the rather smallcompensation fee of DM 150 for each un-filled job of the six percent quota. For thisreason, significant PA programs for dis-abled employees have never been developedin West Germany.

D. Powsonel Assistance Prorns:Achninkandlon d Struchwe

As the description of the social security and wel-fare system shows, there are different ways in whicha disalthd person can receive personal assistanceservices. Provided with a PA allowance he/she willhave to find an assistant on his/her own. Dependingcm tin extent of need, as well as the benefit amount,he/she will employ an assistant, or give donations tofamily members or friends in order to maintain their"willingness to help out". A third way is to utilize anorganization that furnishes personal assistance ser-vices and pay om a fee for service basis.

If in kind benefits for PA are granted, it is theadministrative agency's (insurance agency, socialwelfare agency, etc.) responsibility to deliver theseservices. A few counties have employed home aids,but more commonly the agency will contract with aprivate PA organization for service delivery. In thiscase, payments are made directly to the organizationon a fee for service basis.'"

Except for health insurance law, the laws do notdefine the scope of PA tasks which are covered by PAbenefits. Often this is a matter ofbargaining with theadministrative agency. In general, however, PAbenefits are not confined to basic physical care ser-vices.2"

Most of the six nongovernmental welfare or-ganizations in West Germany offer such services.With increasing demand for PAS they have becomemore and more important to the Lander.

Another possibility is that a family member per-forms the necessary PA tasks and is reimbursed bythe administrative agency.

During the last decade some efforts have beenundertaken to analyze the situation of persons inneed for PAS as well as the existing net of suchservices. The federal government has issued somesurveys and pilot projects.

1. Dissemination and Financial Situation

At the end of the Ws a survey, conducted by asoeial science institute (SOCIALDATA) found thatthere were 2,530,000 West German persons (whowere older than seven years old) in need of PAS.2"This number represented 4.7% of the overall (Ger-man) population in West Germany at that time.= Anadditional 260,000 persons are institutionalized."The same survey reported that only a small numberof those in need of PAS receive those services fromoutside their family. While 63% received PA fromfamily members and 31% were provided with helpfrom relatives with whom they did not live" only

35

12% of the people were provided with PA by PAprograms (on a fee for service basis). I'

Although the survey dates back to 1980 and manyservice centers have been estahlished in the lateseventies's the situation has not changed markedly.

According to another survey, conducted in1984/1985, there are 3889 centers or agencies thatprovide some sort of attendant services."' So far theincrease of PAS centers has not decreased the PAwork done by family members significantly. Thereport concludes that still over 50% of all consumersof PA receive these services from relatives exclusive-ly. Ironically, this is especially true for the moreseverely disabled persons."'

At the end of the 70's a survey, conductedby a social science institute (SOCIAL-DATA) found that there were 2,530,000West German persons (who were older thanseven years old) in need of PAS. This num-ber represented 4.7% of the overall (Ger-man) population in West Germany at thattime. An additional 260,000 persons areinstitutionalize&

Most PAS centers are subsidized by the Lendergovernments. Meanwhile each Land has fundingregulations that require a minimum standard of ser-vices provided (mostly health care, and domestic ser-vices), but these regulations differ from Land toLand." However, this funding covers only the basiccosts. Additionally the centers are reimbursed on afee for service basis by the social agencies, mostlyhealth insurance agencies, and local social welfareagencies. The actual reimbursement rate resultsfrom individual agreements between social (ad-ministrative) agencies and PAS centers. CurrentlyPAS fees differ from center to center ranging fromDM 3 to DM 25.2"

According to a 1984 publication on PAS publishedby the umbrella organization of the six West Germannon-governmental welfare organizations, the issue ofreimbursement rate has been a problem for a longtime. Social agencies (insurance agencies, local wel-fare agency) try to keep the reimbursement rates lowwhich in turn forces the PA centers to confine theirservices to 'cheap" and "quick" tasks."

As mentioned earlier, the bulk of PAS costs hasto be carried by the local welfare agencies who areresponsible for benefits according to the Federal So-cial Assistance Act. The funds have to be carried bythe local governments or counties. In some counties

41.

PAS expenditures amount to a third or half of thesocial budget.229

PAS benefits provided under the Federal SocialAssistance Act are means-tested. Thus they are avail-able only to disabled persons with low income ( andassets) and who additionally meet the 'helplessness"level required by the act. Therefore, although theFederal Social Assistance Act is currently the mainfunding source for PAS it does not mean that everyPAS consumer receives financial assistance. Accord-ing to the survey of 1980 more than 40% of all PAusers do not receive any financial assistance at aIl.299These persons have to pay for PAS out of their ownpockets or have to rely on their family's or friends''willingness to help out* without any donations.

In 75% of the cases female family members orfemale friends take over these tasks.= Often thesewomen receive no money at all for their PA work.Since only 12% of all persons in need of PA areemployed, the majority will be unable to pay 6or PAS.

In 75% of the cases female family membersor female friends take over these tasks.=Often these women receive no money at allfor their PA work. Since only 12% of allpersons in need of PA are employed, themckjority will be unable to pay for PAS.

2. Goals, Administration, and Structure

Today most of the PA centers are organized byone of the six welfare organizationsm. Only somecounties employ nurses or home aids (calledFamilienpflegerinnen or Altenpflegerinnen).292

The scope of services provided differ from centerto center. In general, however, m*r services arehealth care (furnished by nurses) and attendant ser-vices to the elderly. According to the report of theDeutscher Verein2", 89% of the centers providehome-health care by certified nurses, and 75% fur-nish attendant services to the elderly, but only 49%offer domesfic services and attendant services toyounger persons.294

Thus, two thirds of all attendants who areemployed by PA centers are medical personnel."'

Other employees are social workers, attendantswith no professional background (formerhomemakers, students, unemployed, etc.) and volun-teers and conscientious objectors who have to com-plete social services.2"

The majority of PAS is furnished by what is called"Sozialstationee297. Their services relate to the medi-

36

cal model of attendant services and do not allow muchconsumer involvement. Commonly, the disabled con-sumer has no choice on who is going to be hisiherattesidant and at what time.

From the beginning these services were notdesigned to cover long-term PA needs, but rather toprovide for minimum medical care and home aid inorder to shorten or prevent hospital treatment. Thisis why the typical Sozialstation employs six nursesand a smaller number of home aids and old person'sattendants," The typical client is an elderly personwho needs medical care.

Only a few hours cl services are furnished to aclient of Sozialstation. For instance, the survey un-dertaken by Deutscher Verein shows that in theLAnder Hamburg, Bremen, Niedersachsen and Hes-sen that a client received 3 to 13 hours of medicalhome services and 8 to 31 hours of PAS per month in1984.2°9

Unlike Sozialstationen, AHDsthose PAS or-ganized by members of the disability movementwere based on the intention to meet long-term(non-medical) PA needs from the very beginning.Accordingly, these centers employ few medical per-sonnel and a large number of attendants who mostoften do not have a professional education withrespect to attendant services.

Actually a vast number of these attendants areconscientious objectors. According to a survey includ-ing 11 AHDs they represent more than 60% of AHDemployees.'" The main reason for this high percent-age of conscientious objectors among AHD atten-dants is AHD's and consumers' interest to keep thefee rates low. By law these attendants receive only asmall wage during social service. By employing themas attendants, AHDs are able to offer comprehensivePAS at very low rates. In 1985 PAS fees in those 11centers ranged from DM 2 to DM 25.391

In contrast to Sozialstationen the scope of ser-vices rendered by these centers to one consumer permonth ranged from 8 hours to 313 hours of PA in1984.2" In addition many of these centers offer atten-

AIM's concept of comprehensive PAS is notonly manifested by the service timerendered to one consumer but can be seenby the scope of tasks that are included inPAS. Encompassed are such various tasksas child care for disabled children, per-sonal assistance to adults, domestic ser-vices, school and work assistants, signlanguage interpreters and readers.

dant referral services. The PA furnished by theseattendants who are not AHD employees were notincluded in this survey.

ARD's concept of comprehensive PAS is not onlymanifested by the service time rendered to one con-sumer but can be seen by the scope of tasks that areincluded in PAS. Encompassed are such varioustasks as child care for disabled children, personalassistance to adults, domestic services, school andwork assistants, sign language interpreters andreaders.

According to their philosophy AHDs try to allowas much consumer involvement as possible. WhileSozialstationen commonly are directly reimbursed bythe insurance agency or local welfare agency for ser-vices rendered to a consumer who qualifies for PAbenefits, Alins support a different method of reim-bursement.

Eligibility requirements for PA benefits arevaguely defined by social welfare legisla-tion, while administrative agencies havevast discretion when deciding on the actualbenefit amount.

Benefits are paid directly to eligible consumerswho then pay for the PAS they receive from AHDattendants or for attendant referral services. Con-sumer involvement is also supported by AHDs withrespect to attendant training and choice of atten-dants. The latter, however, is often difficult to realizewhen the costs of PAS are covered by social benefits.Insurance agencies and welfare agencies have theauthority to decide how much PA is nelessary and upto which level the costs of PAS are reasonable. Oftenthey reject grant benefits that cover the actual PAScosts if less expensive services are available. Thisadministrative discretion may drastically restrict theconsumer's choice. For example, a severely disabledfemale consumer of the AHD in Marburg (a town nearFrankfurt), preferred to have only female attendantsbut needed 105 hours of PA per week. While the costsfor PA performed by conscientious objectors in hercase were DM 2.300, the same PA performed byfemale attendants would cost DM 6.800. The socialwelfare agency rejected grant benefits that wouldcover the costs for female attendants arguing that thesame work done by male attendants (conscientiousobjectors) cost less than a third as much. Her inter-ests in protecting her intimacy were considered to beoutweighed by the public interest in saving socialbudget money." Similar decisions were made whenthe costs for home-based PAS exceeded the costs forinstitutional care.

37

Thus the concept d consumer involvement isoften difficult to realize for disabled consumers whohave to rely on social benefts in order to cover theirPA needs. Eligibility requIrements for PA benefitsare vaguely defined by social welfare legislation,while administrative agencies have vast discretionwhen deciding on the actual benefit amount.

In general insurance and welfare agencies haveagreaments with PA centers as to what is considereda "reasonable* PA fee, but agencies have the finaldecision in each case.

E. Evaluation of the West German Systemof Personal Assistance

West German Social Welfare Legislationprovides for PA needs only at a trinimum level. OldAge Insurance does not grant any PA benefits and thehealth insurance scheme covers only those PAS thatare closely related to medical treatment.

Accident insurance and social maintenance havemore comprehensive PAS provisions but only a fewdisabled persons qualify for these benefits. More fre-quently disability is caused by other reasons than bythe particular accidents covered by these schemes.The majority of disabled people who need PAS are oldpeople and another large group consists of people whohave been disabled since birth or became disabled atan early age.

Thus, 90% of disabled persons who need PAShave to rely on welfare law." The Social AssistanceAct is designed to give a basic level of security only topoor Oople, i.e., those who are not covered (sufficient-ly) by any of the other social net systems.

Accident insurance and social main-tenance have more comprehensive PASprovisions but only a few disabled personsqualify for these benefits.

But the need for PAS is not created by poverty. Itis rather because most disabled persons who needthese services have to spend most of their income andassets on PAS before they qualify for PAS benefits(under Federal Social Assistance Act), that they be-come a member of the poor population.

In a country in which more than 40% of thedisabled population needing PAS does not receive anypublic assistance, one can hardly say that thispopulation group is covered by the social net. Buteven those 60% of disabled people who do receive PAbenefits are not covered sufficiently. Courts andstatutory law require a very high level of Thelplises-ness" before granting eligibility to any PA benefit.

The result is that disabled persons with less frequentneed for PA ars excluded from these benefits. Respec-tively, it is interesting to note that, as the surveysshowed, actually a very small number of the moreseverely disabled receive PAS from outside theirfamilies.

At (regular) school or at work there are hardlyany posathilities to receive PAS. There are only a fewpilot projects rendering those services. The lack ofPAS in these areas is due to several reasons.

For one, PAS are still considered home servicesby most politicians and administrative officials.Sectmdly, educatim law gives no substantial right tointegration to disabled students. By law they have toenroll into the special school which matches theirdisability.** Only a very few disabled children escapesegregated education in West Germany. Thoseparents who get their children adrnitted to regularschool because of the teachers' and administration's'good will' harctly dare to request PAS.

The network of PAS centers is growing butstill far from being comprehensive. The1980 survey found that only 12% of thedisabled population in need were reachedby these centers.

Thirdly, although the legal situation is differentwith respect to employment because employers bylaw are obliged to hire disabled persons, the realityis very similar to education. The unemployment rateamong the disabled population is high and few dis-abled people enter the mainstream of the labor force.Government officials undertake hardly any meaning-ful efforts to enforce the law which cannot be enforcedby aggrieved disabled persons through lawsuits.

The network of PAS centers is growing but stillfar from being comprehensive. The 1980 survey foundthat only 12% of the disabled population in need werereached by these centers. By today the percentagemay be higher but the maiority of disabled personswill have to rely on family members and friends inorder to cover their PA needs.

A common problem among an PAS centers is abad financial situation. Unble institution and nurs-ery homes they receive reimbursement only for theiractual PA services. Social welfare agencies and in-surance agencies are generally unwilling to pay foradministrative costs and the like. The iimds from theLAnder governments, which are designed to supportthese centen are insufficient They are usefixl as astarting fund but they do not cover regular organiza-tional wets.

38

Financial insecurity is one reason why most PAScenters provide sPrvices only to disabled persons withlittle PA need. Those customers can be furnished withcheap and quick services while persons with moreextensive needs are more costly to serve.

Unhie Sozialstationen, the AHD's started out tomeet the needs of those disabled persons. Based onthe philosophy of independent living they wanted tooffer an alternative to help from family members,rather than confining their work to support thesefamilies. In reality this was difficult to realize, thoughmany of these centers now serve a significant numberof persons with extensive PA needs.

Without using ccescientious objectors as atten-dants those kind of services wouldn't be possible**.The present PAS policy in West Germany does notallow the employment of attendants who are paidadequate wages.

PAS performed by conscientious objectors havesome disadvantages, however. One is that these per-sons are forced into this work because they have todo social service as a compensation for mandatorymilitary service. It is their choice to be an attendantor do any other social work. But it is a choice betweenunwanted alternatives. Thus, they are often not par-ticularly motivated to perform PAtasks which in turnaffects the quality of PAS rendered to the consumer.Another problem is that these are all male attendantsand many disabled women feel uncomfortable beingassisted by men especially if they need help withhygiene care and the like.

The labor status of attendants is a common prob-lem. Low wages, rarely combined with social securityor other benefits reveal that PA work is not highlyreccgnized. Under those circumstances the concept ofIndependent Livines difficult to realize.

The AHD model allows more consumer controlthan the Sozialstatim model, but both models haveto be organized under the same economical and legalconditions. Administrative officials have the finaldecision on how many hours of PAS can be providedto a consumer. And reimbursement will be providedonly for those services that have been granted bythem. These are severe restrictions for the PAScenters as well as for the consumers.

In order to escape these restrictions somecenters, founded more recently by disability activists,now favor a different concept. In reference to the CILmovement in the United States, they are calledCenters for Independent Living. Among a variety ofservices they offer attendant referral services to dis-abled persons but they do not employ any attendantsin order to provide PAS.**

On April 12-14th 1989 approximately 100 dis-abled people from 14 countries (including Sweden,United States and West Germany) met at theEuropean Parliament in Strasbourg for the first'European Conference on Personal Assistance Ser-vices for Disabled People".

The participants passed a resolution which in-volved the following principles on PAS:

"I. Personal assistance services are a humanand civil right which must be provided at nocost to the user. These services shall servepeople with all types of disabilities, of all ages,on the basis c?' functional need, irrespective ofpersonal wealth, income, marital and familystatus.

2. Personal assistance users shall be able tochoose from a variety of personal assistancemodels which together offer the choice ofvarious degrees af user control. User control,in aur view, can be exercised by all persons,regardless of their ability to give 'legally in-formed consent'.

3. Services shall enable the user to participatein every aspect of life, such as home, work,school, leisure, travel and political life etc.These services shall enable disabkd people, ifthey so choose, to build up a personal andfamily life and fulfill all their responsibilitiesconnected with this.

4. These services must be available long-termfor anything up to 24 hours a day, seven daysa week, and similarly on a short-term or emer-gency basis. These services shall include as-sistance with personal bodily functions,communicative, household, mobility, workand other related needs. In the assessment of

39

need the consumer's view must be paramount.

5. The funding authority shall ensure thatsufficient funds are available to the user foradequate support, counselling, training oftheuser and the assistant, ifdeemed necessary bythe user.

6. Funding must include assistant's competi-tive wages and employment benefits, all legaland union-required benefits, plus the ad-ministrative costs.

7. Funding shall be a legislative right andpayment must be guaranteed regardless offunding source or local government arrange-ments. Funding shall not be treated as dis-posable I taxable income and shall not makeehe user ineligible far other statutory benefitsor services.

S. The user should be free to appoint as per-sonal assistant whoever s I he chose, includingfamily members.

9. No individual shall be placed in an institu-tional setting because of lack of resources,high costs, sub-standard or non-existent ser-vices.

10. There shall be a uniform judicial appealprocedure which is independent of funds,pmviders and assessors; is effected within areasonable amount of time and enables theclaimant to receive legal aid at the expense ofthe statutory authority.

11. In furtherance of all the above, disabledpeople and organizations contmlled by themmust be decisively involved at ail levels ofpolicy making including planning, im-plementation and development."

4 5

An advantage of the Swedish system is thateligibility to PAS and benefits is not linkedto the person's income. Unlike the systemsof the United States and West Germany,Sweden's social welfare lggislation recog-nizes that PA needs are not caused bypoverty and that disabled persons of allincome groups may need those services inorder to have equal opportunities insociety.

The PAS systems in Sweden, the United Statesand West Germany are far from fiilfilling these prin-ciples. However, each system seems to have its goodand bad points.

Wows Advotages

An advantage of the Swedish system is thateligilnlity to PAS and benefits is not linked to theperson's income. Unhle the systems of the UnitedStates and West Germany, Sweden's social welfarelegislation recognizes that PA needs are not causedby poverty and that disabled persons of all incomegroups may need those services in order to have equalopportunities in society. Otherwise, disabled personswould have to earn a higher income than the averagecitizen to be able to cover such disability-relatedcosts. Sweden is also exemplary with respect to reim-bursement policy towards relatives of disabled per-sons who provide PA. To pay these family membersfor their labor is a necessary response to those socialand demographic changes of society, that were men-tioned earlier.

An advantage of the American system isthe diversity among the programs. Becausestate and federal government did not dic-tate one uniform PAS model for each pro-gram, innovative forms of PAS withsignificant consumer involvement could bedeveloped.

An advantage of the American system is thediversity among the programs. Because state andfederal government did not dictate one uniform PASmodel for each program, innovative forms of PASwith significant consumer involvement could bedeveloped. It seems though, that now the time hascome to set the path for a more uniform nationalsystem in order to overcome the shortcomings that

grew mit of piecemeal attempts to address isolatedpr4dems &PAS.'"

An advantage of West German's personal assis-tance law may be that it clearly distinguishes be-tween health care and personal assistance, whichhelpsat least to a certain extentto avoid the medi-cal model of PAS that requires a doctoral treatmentplan and health professionals to perform the services.

An advantage of West German's personalassistance law may be that it clearly dis-tinguishes between health care and per-sonal assistance, which helpsat least toa certain extent 41) avoid the medicalmockl of PAS th requires a doctorultreatment plan and health professionals toperform the services.

A commendable West German benefit is the spe-cial benefit of PAS allowance provided for under theFederal Social Assistance Act in addition to PASbenefits. Except for the eliglility criteria of low in-come and high degree of 'helplessness", this benefitis an important tool for independent living. It isgranted at a certain degree of disability no matterwhether the money will actually be spent on PAS.Most disabled people use this money, according to thelegislators' intent, fnr motivating their friends' andrelatives' willingness to help out' co a "voluntary'basis. This might be important in emergency situa-tions, when the assistant suddenly becomes ill and noother assistant is available. Also, there are situationswhen the assistant is not on duty but a few PA tasksare needed. Or a disabled person might need only alittle PA every day and friends are willing to do thesetasks but do not want to have a financial relationshipwith the disabled friend. In these cases it is importantthat the disabled person is able to give little gifts orinvite these Mends to dinner or movie. This helps tokeep the friendship on equal grounds. Siace the wel-fare agency has no authority to check on how themoney is spent, the disabled person is free to use thismoney for whatever s/he deems reasonable.

In my view the disability allowance is also anincentive to avoid extensive use of public PAS be-cause it allows an individual to choose a middle roadbetween labor relationship and altruism.

Disadvantages

The disadvantages of each country's system havebeen mentioned in each chapter. Therefore only a fewshould be named here. Common to all systems is that

40 4

The question of costs is certainly an impor-tant factor in social policy but it should notbe the only one.

severely disabled people are more or less excludedfrom public PAS. One explanation may be that com-munity-based PAS are a relatively new form asocialservices and more experience is necessary to over-come the general assumption that institutional careis the best alternative tbr these people. However, gleast Sweden has had a long tradition of PAS fordisabled people. And meanwhile each country hassome sort ci pilot project which proved that inde-pendent living is possible for severely disabled in-dividuals. Rather, it seems to be a matter of costs, e.g.the fact that furnishing PAS to some disabled peoplemight be more expensive than institutional care. Thequestion of costs is certainly an important factor insocial policy but it should not be the only one.

The independent living movements grew out ofdisabled peoplee struggle against disability-baseddiscrimination which has different forms. One is theattitude of patronizing and pity and another issegregation and institutionalization. The inde-pendent living model of PAS was developed by dis-abled individuals who were experts with respect tothese kinds of discrimination. They understood thata shift of paradigm in disability policy was necessary.The independent living concept provides this newparadigm, one in which disabled people have a voicein their own future. It fosters a new sense of dignityand respect which frequently has been denied todisabled people. Viewed from this perspective, socialpolicy with respect to PAS for disabled people cannotbe determined by the matter of costs only, but ratherby the goal to undo past discrimination.

In all three countries the systems of PASare more commonly organized according tothe medical model which assigns the help-less and passive role to disabled people,rather than supporting the principle ofconsumer control. However, the pointcould be made, that the same is true forsome services that are rendered to non-dis-abled (as well as disabled) persons.

In all three countries the systems of PAS aremore commonly organized according to the medicalmodel which assigns the helpless and passive role to

41

disabled people, rather than supporting the principleof consumer control. However, the point could bemade, that the same is true for some services that arerendered to non-disabled (as well as disabled) per-sons. For example teachers in schools are assigned tochildren, rather than being chows by their parents.There are similar situations with respect to medicalservices. Sometimes a patient has no influence onwho is going to be hisiher doctor for visit or surgerybecause again, it is a matter of assignment. Do thedisability movements, then demand more choices andcontrol for disabled people than their non-disabledpeers have?

Again one has to take the antidiscriminationcomponent into account in order to answer this ques-tion. There is a prof-mind difference between thechoice and control over who is going to teach my childand the choice and control over and who is going toput me at what time to bed. It is not only that theassistance disabled people need often is more in-timate, although this is a critical factor. To havechoice and control with respect to PAS simply meansto decide on the most basic things in daily life. Andwhile, of course, free choice with respect to medicalservices is an important right as well, demandingcontrol and choice with respect to PAS, does not meanto ask for extraordinary privileges for disabled in-dividuals not available to other citizens. Rather, itmeans to demand equal opportunities with respect tothose decisions a disabled person takes for granted.

The independent living model does notprescribe a narrow form of PAS for everynon-disabled consumer. Dixtbled peopleas well as non-disabled vary in their desireor ability to be self-reliant. While there arepersons who want to hire, fire and traintheir own assistants, there are others whowant to delegate attendant managementand training to a service agency.

The independent living model does not prescribea narrow form of PAS for every non-disabled con-sumer. Disabled people as well as non-disabled varyin their desire or ability to be self-reliant. While theirare persons who want to hire, fire and train theiv ownassistants, there are others who want to delegateattendant management and training to a serviceagency. And there are those, who because of theirdisability, are unable to totally manage their ownassistants but desire some other level of control.

Therefore, a full range of options should be avail-able.

4 7

Another issue, that is railed by the principle ofconsumer control is the questim of needs assess-ment Activists of the independent living movementsky that (often) the disabled individual is the bestexpert on his/her disability. Nevertheless, any publicPAS system must have some needs assessment pro-cedure according to which an individual case will bedecided. There has to be a standard revealing who iseligible for PAS and for how much. It is unrealistic toassume that this decision could be left with the dis-abled consumer without having the problem ofmisuse of social btmefits. Disabled persons are notsuperior to other human beings receiving social wel-fare or social security benefits. On the other hand, theanalysis of the PAs systems in Sweden, West Ger-many and the United States, shows, that a greatnumber of disabled persons do not receive the assis-tance they need because of legal or administrativerestrictions.

In West Germany many disabled peopleare excluded from public PAS becauseeligibility is linked to a high degree offunctional limitations. Generally, the lawsrequire that the recipient be unable to sur-vive without PAS.

In West Germany many disabled people are ex-cluded from public PAS because eligbility is linkedto a high degree of functional limitations. Generally,the laws require, that the recipient be unable tosurvive without PAS. However, pAs in the sense ofindependent living should not be confined to tasks ofbasic physical care mach as bathing, feeding, dressing,etc. Rather PAS should enable the recipients to makea living in their communities. Therefore, eligibilityshould be linked to the time of PA in needsay onehour per week/ per month as a minimumno matterwhat tasks are necessary.

An example of administrative restriction wasgiven with the case of the German disabled womanto whom female attendants were denied becauseutilising conscientious objectors was a cheaper op-tion. Social welfare agencies cften are more con-cerned with the balance of their social budget thanwith needs of the citizens they ars supposed to genre.Legislators support this kind of administration whenthey pass laws involving programmatic commit-ments to PAS that are not followed by augmentedsocial budgets.

A needs assessment procedure that supports theindependent living concept has to take the

consumer's interest as well as financial aspects intoaccount. Furthermore, the right balance betweei toomuch paternalism and privacy invasion on the onehand and an abstract eligibility formula which isbound to lead to mistakes has to be found. For in-stance it would not be helpiial to create a list ofidentified disabilities and allocate a certain amount(in benefits to each type of disability. People withidentical disabilities often differ greatly in theirneeds for assistance."

In its draft bill on PAS, which is modelled on theAmerican Education For All Handicapped Children

, the World Institute on Disability proposes thewing assessment process:

'Section 5 (a) NEEDS ASSESSMENT ANDSERVICE PLANNING shall be the respon.sibility of a government or non-prclit agency(Oath does not provide personal assistanceservkes) designated in each locality by thestate. This agency shall

(1) perform assessments of prospectiveor current recipients in order to deter-mine

(A) their eligthility for services;

(B) the extent to which they are ableto perform each activity of dailyliving;

(C) the extent to which they will becapable of managing their own per-sonal assistance service; and

(D) if there are special circumstan-ces which affect their need for per-sonal assistance;

(2) Use the information gathered duringthe assessment to prepare a written In-dividual Service Plan for each recipientThe Individual Service Plan shallsPecifY

(A) the number ofhours and types ofservices to be provided;

(B) whether the services will beprovided by individual providers oragency employees;

(C) whether or not the recipient iscapable and desirous of exercisingtotal responsibility for managing heror his own personal assistance ser-vices, and if not, whether therecipient can acquire the necessarymanagement skills through trainingpursuant to Section 5 (cX2XE) above;

42 4 3

or whether management assistancewill be provided by an outside agencypursuant to Section 5(c) (1) above;

(3) Give full consideration(weight?) to theopinions and desires of the recipient or his or herrepresentative during the assessment process andpreparation of the Individual Service Flamm'

The independent living movements haveachieved great success in a short period oftime. They have taken a stand against dis-ability-based discrimination. They haveproval that disabled people need ncg livein institutions, or be educated in separatedschool settings or work in sheltered wor*shops if social and environmental changesare umlertaken. The establishment of aPAS system, based on the independentliving concept, is one of those necessarytransformations.

WID's proposal is a highly individualized evalua-tion process. While it assures exact needs assessmentsad that services be provided in various forms, itmight also be accompanied by some restrictionsregarding the redpient's choice. For instance, Whehas to know from the beginning what PAS model fitsher/his needs. Once the Individual Service Plan is set

up, the consumer will be confined to the prescrledform of PAS.

How much weight is given to the recipient's voicewithin the needs assessment process thus seems tobe essential. One safeguard would be a comprehen-sive appeals procedure which enables the recipient toenforce a substantial right to PAS.

The independent living movements haveachieved great success in a short period of time. Theyhave taken a stand against disabilitpbased dis-crimination. They have proved that disabled peopleneed not live in institutions, or be educated inseparated school settings or work in sheltered workshops if social and environmental changes are under-taken. The establishment of a PAS system, based onthe independent living concept, is one of those neces-sary transformation& A transfcrmation which willprobably be costly and require legal reforms.

At least for the United States and West Germanyit looks like legal reforms with respect to PAS arepredictable for the future because in both countriesthere are wiping legal debates on this issue. Thediscussion on how to cope with the rising problem oflong-term assistance need in the future is also takingplace in groups beyond the disability movements. Thelatter have now the responslilities to reach out andform coalitions with all those who have a stake in theoutcome and invoke or influence the legislativedebates.

43 4 9

",

f'

*44$

E

.4,644no

$1

11'e

It0'.141

,!,

ot,

noirrotpa OW

14110.4M

t?

,

4 6

A

4

1A

o

U.S. Commission on Civil Right& (1983) Acccen-modating the Spectrum of Individual Abilities.Clearinghouse Publication 81, (hereinafter cited as:U.S. Commission on Civil Right& (1983) Accom-modating); Litvak S. et al. (1987) Attending toAmerica: Personal Assistance for Independent Living,World Institute on Disability, Berkeley CA

2 One famous example of those attitudinal bar-riers in the labor force is the story about theautomobile manufacturer in Detroit who requiredthat workers with amputations wear artificial limb&His motivation was not that those limbs would im-prove the disabled workers' merits hat he was con-cerned 'for the working morale of the men." Thepresence of a disabled person made people feel un-comfortable. 'That was in 1925 and the prevailingattitude at that time was to hide disability in orderto accommodate for a nondisabled labor market.Berkowitz, E.D. (1988) Disabled Pale Y, America'sPolicy for the Handicapped, Cambridge UniversityPress, p. 184

3 For the United States: Scotch RIC (1984) FromGood Will to Civil Rights, Temple University Press,Philadelphia

Stoddard S. (1978) 'Independent Living: Con-cept and Programs." American Rehabilitation 3, p. 2

° as well as professor and cliztir of the Departmentof Socioloa, Brandeis University

° Litvak S., Zukas H., Heumann J. (1987) Attend-ing to America. Personal Assistance for IndependentLiving. World Institute on Disability, Berkeley, CA,p. iv;

Unlike old age, race and gender, disabilityresists precise deftnition and measurement Deter-mining disability involves social judgement as well asa combination of physical, economic, psychologicaland environmental conditions.For a more detailed discussion: Berkowitz E.D.(11,87), ibid., p. 3 et.seq, U.S. Commission on CivilRights (1983) Accommodating ibid., pp.

Litvak S. et al. (1987), ibid. p. 1;° Apparently this definition does not solve the

difficult problem of defining disability'° In Europe the first institutions for disabled

persons were built in the end of the middle ages. Inthe United States institutional care for disabled per-

45

sons emerged in the nineteenth centuryFor Europe see: Perl O. Kruppeltum wu Jesellwhaftim Wandel der Zeit. Gotha 1926; iiesalski K.Grundriss der krappelfursorge. 3. Anil Leipzig 1926;For the development in the United Sta.es see: VarelaRA. 'Changing Social Attitudes and LegislationRegarding Disability" in:Crew, N.M., Zola LK, et al.(1983) ibid.;Care outside institutions in form of homemaker-home health services was offered only by privatecharitable organizations in the beginning of thenineteenth century in Europe and twentieth centuryin the United States.See: Laurie G. (1977) Housing and Home Services forthe Disabled. Harper & Row, Inc., Maryland

" Scotch R.K. (1984), ibid.12 Scotch R.K. (1984), ibid., p. 13

DeJong G. (1983) "Defining and Implementingthe Independent Living Concept*. in: Crewe N. andZola I.K. (1983) ibid.

14 see: DeJong G. (1978) The Movement for Inde-pendent Living: Origins, Ideolggy, and Implicationsfor Disability Research. Medical Rehabilitation In-stitute. Tufts-New England. p. 20 et seq.

" DeJong G. (1983) ibid., p. 12DeJong G. (1983) ibid., pp. 20;

Wolfensberger W. (1973) The Pdnciple of Normaliza-tion in Human Services. Downsview: National In-stitute on Mental Retardation;

11 Dybwad once explained this principle this way:"...normal on our earth is trouble and trifle, trial andtribulation and the handicapped person has the rightto be exposed to it"Dybwad G. (1973) "Is Normalization a Feasible Prin-ciple of Rehabilitation?" in: Models of Service for theMultihandicapped Adult, United Cerebral Palsy ofNew York City, Inc., New York, p. 57

" Illich I. (1976) Medical Nemesis: The Ex-pmpriation of Health Pantheon, New York;

DeJong G. (1978), ibid., p. 22;

2° Litvak S. et al. (1987) ibid., p. 10;2' DecTong G. (1983) "Attendant Care", in: Crewe,

N. (1983) ibid., p. 157;Frieden L (1983) "Understanding Alternative Pro-gram Models", in: Crewe N., Zola LK, (1983) ibid., p.62-72;

is The Saunders of those Centers were not the firstdisabled persons in the United States, who startedout to organize personal assistance services on theirown. From the mk1-50's a variety of projects such asapartment living arrangements, transitional wojectsand organized home services ware initiated by in-divithials or groups on assistance users. Many ofthem have failed or faded away. See: Laurie G. (1977)ibid.;

211 Department of Rehabilitation, (1982) TheCalifornia Indepauknt Living Centers. Sacramento,CA, p. 5; Laurie G. (1977) thid., p. 129;

" Delmg G. (1979) Ibid., p. 437; Cole J.A. (1979)'What's new about Independent Livingr, Archives qfPhysical Medicine and Rehabilitation No. 10. p. 459

III Cole G.A. (1979) ibid., p. 459

Frieden L (1983) lid., p. 62-72"For example a survey on ten California CIL's

reveals the following list of services: 'Attendantreferral, general advocacy, peer counselling, housingassistance, identification of accessible housing,benefits counselling, legal advocacy, persceal ad-vocacy, transportation, employment preparation,financial counselling, special services for the deaf,special services for the blind, vehicle aceas (repairmodification), attendant training, substance abuseeounsellinesee: Department of Rehabilitation (1982) ibid., p. 4

so The other four key IL services are: peer coun-selling, skills training, transportation and housing.See Crewe N., Zola I.K. (1983) IBID., P. 155

" Laurie G. (1982) *Independent Living' in:Vereinig.mg Integrationsforderung e.V. (VIP)Manchen. (1982) Behindernde Hilts oder Selbstbes-timmung der Behinderten? Munchen p. 129

$9 The "father' of the fokus model is Sven OlovBrattgard, today at University of Gatebord, Depart-ment of Handicap Research, Sweden

s' Brattgard S.O. (1982) "FOKUSBrennpunktder Integration Behinderter in SchwedeeVereinigung Integration sforderung e.V. (VIP)MUnchen. ibid p. 45;Retake A.D. (1986) Independent Living and Atten-dant Care in Sweden:A Consumer Perspective. WorldRehabilitation Fund, Inc.: New York, NY, p. 32;

32 Ratzka A.D. (1986) ibid., p. 32

N Ratzka A.D. (1986) ibid., p. 32

Ratzka A.D. (1986) lid., p. 32" With participants from the United States

(Judith Heumimn and Ed Roberts, World Institute onDisability, Berkeley, California) and from the Unitedlangdom (Ken Davis, Derbyshire Coalition of Dis-abled Citizens and Neill Slatter, Hampshire Inds-

46

pendent Living Center); Ratzka A.D. (1986) ibid., p.pp n. 65

" Retake A.D. (1986) ibid., p. 33" In some of the "boanderservice complexes

heavy conflicts between assistants and administra-tic= on the tme side and tenants on the other werecaused by documents that were prepared in order torationalize the service. Some ci the documents wereproduced secretly and besides needs assessment con-tained such information as tenanta' characteristicsand behavioral customs. See: Ratzka A.D. (1982)"SchwedenWunderland der Integration?" in:Vereinigung Integrationsfbrderung (VIF) Manchen,(1982)Ibid.p. 63

Ratzka A.D. (1986) ibid., p. 44" Retake AD. (1988) "Aufstand der Betzeuten.

STILPersOnliche Assistenz und IndependentLiving" in: Mayer A., Ratter J. (ed.) Abschied vomHeim. Erfahrungsberichte aus Ambulanten Dienstenund Zentren fiir Selbetbestimmtes Leben, MunchenAG SPAKPublikationen, pp. 183

40 Those are:

(1) Caritas (Organization of the Catholic Church)

(2) Diakonisches Werk (Organization of theProtestant Church)

(3) Arbeiterwohlfahrt (Social Democrats orientedwelfare organization)

(4) Deutsches Rotes Kreuz (German Red Cross)

Zentralwohlfahrtsstelle der Juden inDeutschland (welfare organization of Jews in Ger-many)

(6) Paritittischer Wohlfahrtsverband (coalition ofa wide range of different non-clerical "free" welfareorganizations)

41 Thalidomide was a drag against pregnancynausea (and other indications) whieh caused fetaldamages and resulted in the birth of disabledchildren without arms, legs or other organs. It was onthe market between 1957 and 1961 in West Germanyand seven other countries, but not in ..he UnitedStates.

" These institutional and home-based servicescomplement the state's health and social services.

44 for a general analysis see: Bauer It, Diessen-bacher H. (ed.) Organisierte Nachstenliebe. Opladen.Westdeutscher Verlag. (1984);

" The mental disability organization"Lebenschilfe far Geistighehinderte e.V." also ownssheltered workshops and homes for mentally dis-abled.

" Most of the new disability groups rejected the

celebrations of the year as an attempt to disguise thereal deficiencies of disaMlity policies. They organizedin order to dishub these celebrations. Several ac-tivities ouch as a blockade on the national openingceremny in January 1981 and the "crippel tannerconcerned with human rights violations against dis-abled persons which took place in December 1981achieved significant media attention. See: Mayer A.(1988) Sehinderteninitiativen in der Bundes-repubhle in: Steiner G. (ed.) (1988)1IandFussbuchfir Behinderte. Fisher Taschenbmh Verlag GmbH,Frankftirt am Main. p. 165; Degener Th. (1984) "DasKrappeltribunal 1981" in: Holtz ILL. (ed.) (1982)Waris das? Eine Bilanz zum Jahr der Behinderten.HeidelbergSchindele. p. 26

" So far no survey on the number and scope ofservices of those personal assistance centers has beenconducted. From my experience as a legal counselorat one of the largest centers (feb e.V. Marburg), wherewe did a lot of national networking, I would estimatethe number of these centers between 40 and 50.

47 Riiggeberg A. (1982) "Vereinigung Integra-tions-FOrderung e.V. -VII?" in VereinigungIntegrationsfbrderung (VIF) Mtinchen (1982) add., p.262;Ratter J. (1986) Die Entstehung und Entwkk-lung Selbstorganisierter Ambulanter Hilfsdknate farBehinderte. Materialmappe der AG SPAK (Ar-beitsgemeinschaft Sozialpolitischer Arbeitskreis).Menchen.

4a For example IF is one of the few centers thatprovide reeding services to blind persons on a regularbasis.

Military service of 16 months is mandatory formen in West Germany. Conscientiou:, ,bjectors haveto serve in social service for 20 months at any non-profit organization 'whose services has been acknow-ledged as being for the benefit of the public. Thus theycannot be directly hired by a disabled person.

Degener Th. (1985) "Ambulante Dienstenicht mehr in Heimen lebee in: Die Grtinen. BAGBehindertenpolitik bei den Grtinen. (1985) 1995Ende der Pflegeheime. Hamburg. p. 40

51 Holgersson L., Lundstrtim S. (1975) The Evolu-tkm of Swedish Social Welfare. The Swedish In-stitute. Sweden

= Though not explicitly mentioned, a right towelfare benefits that meet at least subsistence levelis covered by a combination of constitutionalprovisions:Grundgesetz IGG] art, 1 (1) (right to human dignity)and ad. 2 (2) (right to live) (W. Germ)See: Judgement of June 24, 1954, V. Bundesverwal-tunps-zricht, (W.Ger.), BundesverwaltungsgerichtEntscheidungsununlung IBVerwGE] 1, p. 159 (162);A right to welfare is expressively assured in the

Federal Social &sigma) Act ci 1973 (BSHG) insection 4 (1). Social insurance rights, gained by con-trilxitions are cmidered quasi-property rights andare protected under the prowerty clause in Art. 14 ofthe Constitution (Grundgesetz). See: BSGR 45, 251(supreme social court); Dicke D. Rdnr. 20 zu Art. 14in: von Winch, I. (1981) lid.

55 Bley H. (1982) Sozialrecht, 4. Ault Frankfurtam Main; Berkowitz M., Dean D. (1987) 'DisabilitySystems: A Cross National Comparison* in DuncanB., Woods D. (1987) Social Security DisabilityPrograms: An International Perspective. WorldRehabilitation Fund, Inc. New York, N.Y. p. 13

54 Olmstead v. United States, 277 U.S. 438, 478;48 S.Ct. 564, 572 (1928) (Justice Brandeis diseent-ing); Bowers u. Hardwick, 106 S.Ct. 2841, 2848 (1986)(Justice Blackmun, dissenting)

55 However, recent judicial changes in attitudetowards welfare has granted some constitutionalprotection against arbitrary granting or denying ofbenefits by governments.For constitutional protection against arbitrary lenialor granting see: Shapiro v. Thompson, 394 U.S. 618(1969) and Goldberg v. Kelly, 397 U.S. 254 (1970).Both cases bwolved welfare benefits for families withdependent children (AFDC). While the Court recog-nized welfare interests as somehow constitutionallyprotected, it also clearly stated the limits. In Flemingv. Nestor, 363 U.S. 603 (1960) and Richardson v.Belcher, 404 U.S. 78 (1971) the court stated thatsocial insurance benefits, such as old age pension,though 'earned" through contributions, are neitherconstitutionally protected property nor contractualrights. Again it was recognized that those benefitsrepresent an interest which is protected by the Con-stitution. This distinction has been upheld in sub-sequent cases such as Weinberger v. Wiesenfeld, 420U.S. 636 (1975) and Califano v. Goklfarb, 430 U.S.199 (1977).

58 Under this principle, the federal governmentoffers grants-in-aids to state programs. While theadministrative responsibility rests with the states,implying such tasks as fixing the benefit level as wellas developing eligaility criteria, the federal program,standards which States have to comply with in theirown state plans. But states are free to offer their ownprograms in addition to the federally funded pro-gram. Other federally funded programs are ad-ministered by federal agencies, each of which has isown regulations and procedures.See: LaFrance A. (1978) Welfare Law: SThicture andEntitlement. Netshell series. West Publishing Co., St.Paul, Minnesota, P. 63

57 For a comparison of social welfare programssee: Leibfried S. (1979) 'The United States and West

4g

German Welfare Systems: A ComprehensiveAnalysis.' 12 Cornell Inteinational Law Journal 174-198;For a general descriptim see: LaFrance A. (1978)Ibid., Chapter I;

° Compare: Mitchell P. (1987) "Definitions of Dis-ability" in Duncan B., Woods D (1987) ibid., p. 13

° Such disabilities as: blindness, deathees, loss cilimbs, mental disabilities, etc.

For instance my case. I studied law atFrankftut University (West Germany) and at UCBerkeley. I needed to employ two personal assistantsin Frankfurt whereas in Berkeley, due to a com-puterized Ithrary system, a general copy service anda disability accommodation policy (in my case: stoolswere organized so that I could reach computers withmy feet, rams and elevators allowed me to carry mybooks around on a skateboard), no special PAS wasnecessary.

° There is an ongoing discussion on whether ornot progress in technology as well as other forms ofassistanceby dogs or monkeys or robotscan andshould obliterate PAS provided by human beings.See: Crewe N., Harkins A. (1983) 'The Future ofIndependent Living' in Crewe N., Zola LK (1983)ibidp. 327, and:Foulds R., RESNA (ed.) (1986) Interactive RoboticAids. One Option for Independent Living. WorldRehabilitation Fund, New York, NY; I see thesevisions with some skepticism and strongly recom-mend to pursue the independent living principle ofeach disabled person's right to choose".

° In the United States the law requires publictransportation to be accessible and relatively majorefforts have been made to meet the needs of disabledcommuters. This is not the case in Sweden and WestGermany. In Sweden, however, municipalities by lawhave to provide paratransit service, which implieshouse to house travel service in special vans or taxisfor disabled citizens. In West Germany some effortshave been made in this direction during the lastdecade, though the service is discretionary and ingeneral persons are entitled to only a couple of rides(6.10) monthly. Disabled workers and sometimes stu-dents may be provided with car allowances coveringthe costs for adapting a persaial car. These differenttransportation situations in each country have sig-nificant influence on whether or not independentliving is possthle for disabled citizens.

° As a measurement for the scope of PAS tasks,I refer to the definition developed by the World In-stitute on Disability cited above.

" Holgersson L, LundstrOm S. (1979) lid., p. 12° Carlsson B. and F. (1982) Social Welfare and

48

Handicap Policy in Sweden. The Swedish Institute.Sweden. p. 15

° It is common to distinguish elderly personsfrom disabled people with regard to social welfarepolicy. As to the issue of PAS, the author of this thesisdoes not favor this distinction, since a person whoneeds personal assistance because of functionallimitations due to old age is as disabled as a youngerperm with the same functional limitations causedby an accident. The term *disabled person' as used inthis thesis includes persons of all ages. However,since many publications distinguish between thegroups, the term 'elderly persons" will be mentionedsometimes.

" The Swedish Institut. (1987) *Social Insurancein Sweden*. Fact Sheets on Sweden. Sweden (FS 5 tOk)

° The Swedish Institute (1987) 'The Health CAreSystem in Sweden' MIFact Sheets on Sweden. (FS 76o Vpb), Sweden bid.

forsberg M. (1984) The Evolution of Social Wel-fare Policy in Sweden. The Swedish Institute.Sweden, p. 46

" The Swedish Institute (1987) "Social Insurancein Sweden" thid.

71 Private health care exists on a limited scale.Within the inpatient sector there are some privatenursing homes for long-term care. Physicians rarelywork in private offices fillitime.

" The Swedish Institute. (1987) "The HealthCare System in Sweden' ibid.

73 Forsberg M. (1984) ibid., p. 60

74 Parents (of whom one abstains from gainfulemployment in connection with childbirth) are en-titled to nine months leave with compensation of 90%of their gross income during the firsi. Mx months anda fixed amount (60 SEK per day) for the last threemonths.See: The Swedish Institute. (1987) "Social Insurancein Sweden' thid.The publication cites an exchange rate of: "SEK 1 =$0.16"

" ibid." The base amount adheres to the general price

level and is fixed annually. As of 1987 it was SEK24.1000. See: The Swedish Institute (1987) "SocialInsurance in Sweden" ibid.

77 The Swedish Institute (1987) "Social Insurancein Sweden" thid.Although most pensioners in Sweden have loweraverage income than younger people, the number ofpensioners living below the poverty level is said to beextremely low.

5

See: SundstrOm G. (1987) Old Age Care in Sweden.Yesterday, today. . .tornorrow The Swedish Institute.Sweden. g. 20

" Carlsson B. and F. (1982) ibid., p. 43Tbe Swedish Institute (1988) °Support for the

Disabled in Sweden* Fact Sheets on Sweden, (FS 87f Ohn

1.--) Some categories of disability, such as blindnessand deafness are always considered to require PASwith the result that disability allowance is grantedautomatically.See: The Swedish Institute. (1988) 'Support for theDisabled in Sweden'. ibid.

" Holgersson L, Lundstrom S. (1979) ibid., p. 18;.2 The Swedish Institute. (1988) 'Support for the

Disabled in Sweden', ibid.2' depending on the need for assistance due to the

" Forsberg M. (1984) ibid., p. 5236 cited after Forsberg M. (1984) ibid., p. 65

le Retake AD. (1986) ibid., p. 17; The SwedishInstitute. (1988) "Support for the Disabled inSweden*. ibid; Carlsson, B. and F. (1982) ibid., p. 40

" The Swedish Institute (1988) "Support for theDisabled in Sweden*. ibid.

.2 supra p. 39;The Swedish Institute (1988) "Support for the Dis-abled in Sweden". ibid

Ratzka A.D. (1986) ibid., p. 17

" Forsberg M. (1984) ibid., p. 4121 Carlsson B. and F. (1982) ibid. p. 41

mi Up to 25% of a secretary's average full-timesalary. See: Ratzka AD. (1986) ibid. p. 19

" SundstrOm G. (1987) ibid., p. 30; Retake AD.(1986) 03id., p. 38

" The municipal governments recover about 7%of the program's costs in this way.See: SundstrOm G. (1984) ibid. p. 30

66 A statistical report of 1982 provided by theNational Central Bureau of Statistics reveals, thatmore than two thirds of all customers are seniorcitizens. 20% of all persons of 65 years and older and43% of all swedes above 79 utilize the service, citedafter: Ratzka AD. (1986) ibid., p. 26

" Ratzka A.D. (1986) ibid., p. 27

67 Retake AD. (1986) ibid., p. 26Ile Recently some efforts have been undertaken to

try out new experiments of cooperation betweenmunicipal home helper service and county medicalcare system. One of these experiments consists ofnight and weekend patrol groups of a home helper

and a nurse. Part of their night schedule is booked forregular assignments; the rest is reserved for emer-gency visits in response to alarm.See: Sundstrom G. (1987) ibid., p. 39

" supra p. 191" Ratzka AD. (1986) thid., p. 27; SundstrOm G.

(1987) ibid., p. 30161 In Stockholm, for example, a disabled person

is entitled to a maximum of 15 hours a month for amaximum of three outside activities at five hourseach.See: Ratzka AD. (1986) *lid., p. 30

162 Sundstrom G. (1987) ibid., p. 32162 Ratzka A.D. (1986) ibid., p. 28.

1" Generally a two-week course of training isgiven as a preparation for work to an assistant. Forreasons of work environment, assistants are not al-lowed to do certain heavy physical tasks.See: SundstrOm G. (1987) ibid. p. 30

106 Ratzka A.D. (1986) ibid., p. 28

166 Ratzka AD. (1986) ibid., p. 37

1" Some criticism has been raised however, withregard to the consequences of compartmentalizationbetween horns helper service and inhome medicalservice. For the disabled person this means to dealwith two different administrations (county counciland municipal social welfare office) if their disabilityimplies chronic medical needs.See: Ratzka AD. (1986) thid., p. 29

1" SundstrOm G. (1987) ibid., p. 35

1" Ratzka AD. (1986) ibid., p. 37110 See: Ratzka AD. (1986) ibid., p. 36

1" 'intik. A.D. (1986) ibid., p. 39112 Reported as an example which happened in

Stockholm by Ratzka, AD. (1986) ibid., p. 40112 Ratzka A.D. (1986) ibid.

114 The current wage rate for municipallyemployed assistants has been reported as SEK 38.Given the exchange rate cited earlier, this equals anapproximate amount of $ 6. Even if a consumer couldfind a "cheaper" assistant for $ 4 an hour, the costs ofseveral hours a day are not covered by the highestpossible allowance of $ 2.548.00. This would allowonly 1.75 hours assistance a day.

"6 Reports vary from 25 different persons a yeara consumer might meet, to the most drastic exampleof 67 different assistants in a single month for oneperson.See: Ratzka AD. (1986) ibid. p. 41

116 cited in: Ratzka AD. (1986) ibid. p. 41

"7 Today more than 30 federal laws prohibit dis-ability-based discrimination. See: United States

Commission on Civil Rights (1983) AccommodatingP.46

"6 42 U.S.C.A. 6000-81 (1983 & Supp.V 1986)hereinafter cited as "DDA"

10 "Developmental disability" is a phrase com-prising variousmostly mentaldisabilities. Im-pairments that Muse substantial functionallimitations in three or more of the following areas:self-care, language, learning mobility, self-direction,capacity for independent living and economic suf-ficiency. The disability must have started before theage of 22 and be Maly to continue indefinitely.42 U.S.C.A. 6001 (7);U.S. Commission on Civil Rights (1983) Accom-modating, ibid. p. 59

42 U.S.C.A. 6010 (1)-(2)

ni Public Law 94-142 codified in 20 U.S.C.A.1400, 1412 (1),(5XB) and regulated in 34 C.F.R. Part300, 300.132;

I" See: U.S. Commission on Civil Rights (1983),p. 58;

Meyerson A. 1981) "Education Opportunities ForDisabled Children' in: Disability Rights Educationand Defense Fund, Inc. (ed.) Law Reform In Dis-ability Rights Vol. II, Berkeley, CA, Part D;

Divisim 4.5 of CAL WELF. & INST. CODE,Sec. 4502(a) (1082)

0' Rouse v. Cameron 373 F.2d.451 (D.C.Cir,1966); Welsch v. Litkins 373 F.Supp. 487(D.Minn.1974, ; Pennhurst States School v. &alder-man, 466 F.Supp.1295 (E.D.Pa.1977); Matter of Com-mitment of J.L.J. 481 A.2nd.563 (N.J. SuperA.D.1984)

as 101 S.Ct 1531I"' 457 U.S.307 (1982)ir Id. at 317n Id. at 307139 Clark v. Cohen, 794 F.2d 79 (3d.Cir. 1986),

cert. denied 107 S.Ct. 459 (1986); Thomas v. Morrow,781 F.2d.367 (4th.Cir.1986); cert denied 106.8.Ct.1992 (1986) and 107 8.Ct. 235 (1986)

10° Phillips v. Thompson 715 F.2d 365 (7th. Cir.1983); Renni v. Klein, 720 F.2d. 266 (ed. Cir. 1983);Society for Good Will to Retarded Children v. Lein v.Kavanagh 807 F.2d.1243 (5th Cir. 1987); Gieseking v.Schafer 672 F. Suppo.1249 (W.D. Mo. 1987);

un Mental Health Ass. in Cal,. v. Deukmejian 233Cal.Rpt. 130, (No substantive right in Lanterman-Petri-Shore-Act), In re C.B., F.C., J.J. and L.K 518A.2d 366 (Vt.1986), (Statutory right to least restaic-live alternative does not apply if community-facilityI. unavailable)

UM For a deeper discussion, see:

Costello J.D., Preis J.J. (1987) TeYtuld Lei* Rabic-tive Alternatives: A Constitutional Right to Treat-ment for Mentally Disabled Persons in theCommunity' in: Loyola of Los Angeles Law Review20, 1572

"3 Rehabilitation, Comprehensive Services, andDevelopmental Disabilities Amendment of 1978,Pub.L.No. 95-602, tit,11, 92 Stat.. 2955

Pub.LNo. 93-122, 87 Stat.355; codified in 29U.S.C. 701 etseq., (1976 & Supp.V 1981)

136 Funding under Title VII part B requires thatthese centers are operated under the concept of con-sumer involvement Disabled persons must be sig-nificantly involved in policy direction andmanagement.See: National Council on the Handicapped (1986)

p. 45

ue National Council on the Handicapped (1986)ibid. p. 45

110 Zukas H. (1985) Surnmory of Federal FundingSourres for Attendant Care World Institute on Dis-ability, (ed.), Berkeley, CA

Iso For instance in FY 1978 the overall healthexpenditure of the private sector amounted to 111billion dollars whereas the public sector spent 76billion dollars on health programs; Racine D. (1986)ibid. p. 32

me For instance in FY 1978 the overall healthexpenditure d the private sector amounted to 111billion dollars whereas the public sector spent 76billion dollars on health programs; Racine D. (1986)ibid. p. 32

14° Title XVIII of the Social Security Act

141 Title XIX of Social Security Act

14 see infra

'48 by 1920, all but six states had their ownworker's compensation programs; today 55 programsare in oPeration. U.S. Government Printing Office(1986) 'Social Security Programs in the UnitedStates', Social Security Bulletin, January1988 Vol.49, No. 1, p. 28

144 (generally 66 21390;U.S. Government Printing Office (1986), ibid. p. 30.

"6 U.S. Government Printing Office, (1986) ibid.p. 31.

1" U.S. Government Printing Office (1986), ibid.p. 14.

147 Title XVI of the Social Security Act, which wasamended in 1972 and replaced the categoricalFederal-State program for the needy, aged, blind anddisabled persons. See: U.S. Government Printing Of-fice (1986) ibid, p. 50; La France, (1979), ibid. 20

la National Council on the Handicapped (.486)Toward Independence. An Assessment of FederalLaws and Programs Affecting Persons with Dis-abilitiesWith Legal Recommendations. U.S .Government Printing Office. Washington, D.C., p. 56

149 U.S. Government Printing Office (1986), So-cial Security Bulletin, January 1986 Vol. 49, No. 1,P. 50

Win, (April 1987) "Executive Summary of theNational Survey of Attendant Service Programs inthe United States', Attending to America, PersonalAssistance for Independent Living, Berkeley, CA

15138. U.S.C.A. 310,331 (1979 & Supp.V. 1986)

182 U.S. Government Printing Office (1986), ibid.P. 42

183 U.S. Government Printing Office (1986), ibid.p. 42; National Council on the Handicapped (1986),ibid. p. 56

04Litvak S., Zukas H. et.al. (1987) Attending toAmerica. ibid. p. 85

155 1) 42 U.S.C.A. 1395 (1983 & Supp. 1986);2)42 U.S.C.A. 1396; (1983 & Supp. 1986);Publ.L. 97-35;42 U.S.C.A. 30013021 (1983 & Supp. 1986)

Zukas H. (1985) Summary of Federal FundingSources for Attendant Care, ibid.

157Commerce Clearing House, Inc. (1987) 1987Medicare Explained, CCH Editorial Staff Publica-tion, United States, p. 60

1" ibid. p. 60ibid. p. 66

1" ibid. p. 129ibid, p. 137

las Zukas H. (1985) Summary of Federal FundingSources for Attendant Care, supra

163Zukas H. et al. (1987) Attending to America,ibid. p. 20;The National Study Group on State MedicaidStrategies (1984) Restructuring Medicaid: An Agen-da for Change. (Background Papers) p. 12(hereinafter cited as "Restructaaring Medicaid")

184Restructuring Medicaid (1984) ibid. p. 12

la Restructuring Medicaid (1984). BackgroundPaper #4 'The Role of Medicaid in the Provision ofCare for the Developmentally Disabled: Issues &Alternatives*, p. 120

IS 42 CFR 440.70 and 440.170(f);Zukas H. (1984) Summary of Federal Funding Sour-ces of Attendant Care, supra.

lrZukas H. et al (1987) Attending to Americasupra. p. 20; Zukas H. (1984) Summary of Federal

Funding Sources for Attendant Care, supra.268Restructuring Medicaid (1984) P. 11

Zukas H. et al. (1987) Attending to Americaibid. p. 20

17° P.L. 97-35

1n Zulms H. et al (1987) Attending to America,supra, p. 23

172 Restructuring Medicaid (1984) supra. pp.136/151

173 Zuluis H. et al. (1987) Attending to Americasupra p. 25

174 enacted in 1975

175 Zukas H. et al. (1987) Attending to Americasupra. p, 21

I" California's IHSS (in-home supportive servicesystem) with expenditures of $392 million and acaseload of 112,000 people in FY 85-86 is a notableexception.See: Zukas H., Leon J., Cone K (1987) AttendantServices. Descriptive Analysis of California's In-Home Supportive Services Program, World Instituteon Disability (ed.), 24. Ed., Berkeley, CA

177 Zukas H. et al. (1987) Attending to America,supra, p. 21

178 Zukas H. Summary of Federal Funding Sour-ces for Attendant Care (1985)

178 Zukas H. et.al. (1987) Mending to Americaibid. pp. 22;

'8° 29 U.S.C.A. 794; and 34 C.F.R.. Part 104

18145 C.F.R. pt.84 (1982)18$ 20 U.S.C.A. 1412 (1), 1401 (17) (1978 &

Supp.1986)183 20 U.S.C.A. 1401 (17); 34 C.F.R. 300.13; Com-

munity Alliance for Special Education [CASE] (1988)Special Education Rights and Responsibilities. SanFrancisco, CA. p. 3; U.S. Commission on Civil Rights(1983) Accommodating supra. p. 104; 34 C.F.R.104.44(dX1) and (2)

'' 34 C.F.K 104.44(dX2); Ctimenisch v. Univer-sity of Texas 616 F.2d 127 (5th Cir. 1980), vacated asmoot 451 U.S. 390 (1981) (Readers and instructionalaids); CASE, (1988) ibid. p. 61

188 29 U.S.C. 775(aX2)

ise Zukas H. (1985) Summary of Federal FundingSources for Attendant Care, supra

187 National Council on the Handicapped (1986)Toward Independence, ibid. p. 83; Expenditure of FY1988 amounted to $5.3

188 Zukas H. (1985) Summary of Federal MindingSources of Attendant Care, ibid.

in Brown v. Board of Education, 347 U.S. 483

(1956);However, it shoukl be mentioned that Brown hasbeen weakomed by San Antonio Ind. School Districtv. Rodrigues, 411 U.S. 1 (1973).

1* U.S. Commission on Civil Riihta (1983) At-commodating, ibid. p. 128

"I U.S. Bureau of the Census (Dec. 1987) Statis-tical Abstract of the United States: 1988, 108th Ed.,Washington D.C., p. 406

182 Zukas IL et al. (1987) Attending to Americaibid. p. 17

'is lid.184thid. p. 32

1°8 Rad. A. 37

'lbid.p378in add.

128 World Institute on Disability. (1988)A Reportto the National Council on the Handicapped onMeasures for Promoting Almon& Assistance Servicesfor People with Dieabilities. WM, Berkeley, CA. p. 11

241 &km H. etal. (1987) Attending to Allerica

p. 35

228 lbid.p.29

'°1lbld.p.39

" ihid. p. 39

"Eid.p.40

" ibid. p. 42

ilAd. p. 46/50

'1bid.p.53

"%id. p. 53

WIlbid. p. 55

" ibid.

" ibid. F. 57

211 ibid. p. 57

211 Ibid. p. 63

218 IbId. p. 62

914 ibid. p. 63

"thid.p. 63

211 41 of those 77 programs utilizing the IF-model

allow relatives to be paid providers in some cir-

cumstances; Zukas H. etal. (1987) Attending toAmerica ibid. p. 59

2" ibid. p. 61

212 National Council on the Handicapped (1988)

Toward Independence ibid. p. 45;II° supra n. 176211 World Institute on Disability (1981) A Report

to the National Council on the Handkapped... ibid. p.15

218 WM estimates that approximately 5.7 millionpevle of all ages, both in and out of institutes, needFAS.See: World Institute on Disability (Feb. 1988) AReport to the National Council on the Handicapped( Measunts for Promoting Peramal Assistance &r-ob:xis for Pwple with Disabilities, Berkeley, CA, chart2

282 West Germany has eleven states, called47.aenderw

284 other fields af the social net which are notcovered by these three systems are: 1) child allowan-co; and education allowances; 2) youth assistance; 3)rehaidli" tation and work support; 4) rent subsidy; and5) education subsidy. They are °flees interest here.

218 Gitter W. (1986) Sozialrecht 2. Auflg.,Muenchen;Stolleis M. (1976) Quellen zur Geschichte des Sozial-rechts, Reihe: Quellensammlung zur Kulturges-chichte, Bd. 20, (Hrsg.: Treue W.) Geottingen,Frankfurt, Zuerich; p. 29 etseq.

"1 Gitter W. (1986) Sozialrecht ibid. p. 41 et seq.22" Sixialgesetzbuch I ESGBI] 23 (1) (W.Ger.);

Reichsversicherungoordnung MVO] 1236 (W.Ger.)216 21 SGB I, 182 1, 185 RVO

229 Gesundheitareformgesetz [GRG] 1988 Bun-desgesetzblatt (BGB1J1.2477 (W.Ger.)

" 53 MG28' 55 MG (approximately $375"2 185 b RVO13$ Though Accident Insurance initially was

designed to protect injured employees, it now coversa variety of other groups, such as students.

284 22 SGB 1, 557 (i)(No 6) RVO

116 558 RVO

" Juergens A. (1986) Pflegeleistungen fuer Be-hinderte. Soaialpolitilt. und Recht. Bd. 11, Koeln, Ber-lin, Bonn, Muenchen. p. 25 with further references.

I" 558 (2) EVO228 In 1988 it ranged from DM 426 to DM 1706;

Rentenanpassungrxesets [RAG] 7, 1988 Bundes-gezetzblatt [BGB1.]I 581, (W.Ger.)

It" Juergens A. (1986) fiaid. p. 25/26

" 558 (3) RVO"Juergens A. (1986), ibid. p.248 Hauptverband der gewerblichen Berufsgenos-

senschaiten913Juergens A. (1986) lid. p. 26244 Gitter W. (1986) ilxid. p. 203

52 5(,)

" which has to be performed by conscientious*lectors as a substitute fir military services

" regulated by the Opferentschaedigungagesetz(OEGVictims' Compensation Act)

" regulated by the Bundesseuchengesetz (B-SeuchG-Federal Epidemic Act)

"" Basic pension in case of a 30% degree of dis-alilitr, disability pension in case ofa severe disabilitywhich does not allow gainful employment; andeconcenic compensation pensions for those eligible forbasic pension who additionally because oftheir injuryhave actually less income than before.See: Gitter W. (1986) Ibid. p. 208/209; Bley IL (1988)Sozialrecht Frankfurt a.K, pp. 332

2° 35 BVG

193 16. AnpG-KOV vom 27.Juni 1987 BGV1.L1554

Juergens A. (1986) ibid. p. 19"39 35 (1XNo 5) BVG

261 11 (1) BVG

264 2 BEIHG

155 The costs for Personal care services, in anoutside institutions make up a third of the entiresocial welfare budgetSee: Scliellhorn W., Jirasek H., Seipp P. (1988) Bun-dessozialkiifegesetz, Hommentar, 13. Auflg.,Neuwied.Einfuehrung Rz. 53

See for example: Krasney E.-0. (1978)"Empfiehlt es Bich, soziale Pfiege- und Betreuun-gaverhaeltnisse gesetzlich neu zu regelnr in: Steen-dige Deputation des 52. Dt. Juristentages (Hrsg.)Verhandiungen des 52, Dr. Juristentages. Bd.11 (Sit-zungsberiehte). Muenchen, pp. N 34;In ortkr to restructure the field of personal assistanceservices, representatives of the Laender and variouswelfare organizations introduced several drafts intothe German Gundestag (parliament) during the lastcouple of years. Most drafts propose the estab-lishment of a personal assistance insurance scheme.So far, the legislator has not agreed on any of theseproposals. Instead a piecemeal approach has beenchosen and some existing benefit programs have beenextended minimally. One example is theGesundheitsreformgesetz, mentioned earlier. Anoverview on the drafts that have been introduced intoparliament is given br.Kopp A., Achtner O., (1988) Bundessozialhilfegesetz,Kommentar, 6. Auflg. Neuwied, 69 Rz. la

68 (1) BISHG

61) (4) BSHG

" 81 BSHG i.V.m. VO zur Neufestsetzung derGrundhetraege...,BFBLI 840

" Such disabilities as 'loss of three limbs' or

loss of both arms", *Severe brain injury',persons' see 24 BSHO i.V.m. Durchfueh-rungsverordnung MVO] zu 35 BVG; Blind personsreceive a blindness allowance (67 BSHG) thatsimilarly does not require an actual need for PA, butwhichamong other purposesis designed to coverPA expenditures.See: Jueigens A. (1986) supra. at 34 with furtherreferences.

Judgetnent of January 31, 1968, Bundesver-waltungsgericht, V.Senat. Bundesverwal-tungsgerieht Entscheidungssammlung fliVerwGEI29 p. 108.110; Juergens A. (1986) thid. p. 174

262 Commonly services are furnished by contractagencies which are reimbursed by the county govern-ment; see infra.

2S" 69 (5) BSHG

"The act does not explicitly refer to family orhousehold members. It distinguishes between 'anis-tont' and 'special assistant", the latter being referredto as working under employment status.See: Juergens A. (1986) ibid. p. 31/32

" Judgement of June 22, 1978, Bundesverwai-tungsgericht,V. Senat, W.Ger., Bundesverwal-tungsgericht EntscheidungssammlungEBVerwGEI56 p. 79 (86)

298 70 BSHG

267 For more detailed information on thesedemonstration projects see: Bischoff H., Rathgeber It(19 87) Behinderung in Ausbildung und Beruf.Muenchen. p. 11 et.seq.

2138 Einliederungshilfe, 39 BSHG

I" mainly in the Land Hessen." Schwerbehindertengesetz [SchwbG) 5

(W.Ger.)vl 14 (3) SchwbG"2 according to 31 (1XNo 3); II SchwbG and

similar provisions in rehabilitation and employmentlaw, such as 55 A Reha.

" Bischoff H., Rathgeber R. (1987) ibid. p. 82"4 For more details see Bischoff H., Rathgeber It

(1987) ibid.

" Juergens A. (1986) p. 161

Juergens A. (1986) ibid. p. 166" Socialdata (1980) Anzahl und Situation zu

Haase lebender Pflegebeduerfiger. Schriftenreale desBundesministers fuer Jugend, Familie undGesundheit. Band 80. Stuttgart, Berlin, KoelnMainz, p. 32

" ibid." Bundesregierung (1984), "Bericht der Bun des-

regierung ueber die Lege der Pflegebeduerftigen".

53

5

Bundestagsdrucksache 1011943 p. 420 Soda 'data (1980 Avid. pp. 60/61161 ihid.

1/13 ISO", an institute on social research es-timates that more than 50% of the centers in WestGermany were founded during that time.See: Institut fner Sozialforschnng and Sozial-wirtschaft e.V. Saarbruecken (iso) (1987)Modellprogramm 'Ambulant Dienste fuerPflegebeduerft** des Bundesminieters fiter Jugend,Familie, Frauen und Gesundheit. (Zwischenberichtder Wissenschaftlichen Begleitung (Stand:31. 12.10e4) p. 59

133Dentscher Verin fuer oeffentiche und privateFuersorge (1987) Bestandsaufnahme der ambulan-ten sozialpflegerischen Dienste (Xmnhen- und Al-tenpflege, Haus- und Familienpflege) imBundesgebiet. SchriftenreThe des Bundesministersfuer Jugend Familia, Franen und Gesimdheit. Band195. p. 37

Deutscher Verin (1987) ibid. P. 67"3 Bundesgemeinschaft der Freien

Wohlfahrtspflege (1984) Ambulante gesundheits-und sosialpflegerische Dienste der FreienWohlfahrtspflege ibid. p. 4; Deutscher Verin (1987)

p. 85

"I So far, no survey cc fees for PAS has beenundertaken. Several publications give, however,some examples.See: ISO (1987). bid. p. 61;Ruetter J. (1986) Die Entstehund und Entivicklungselbstorganisierter Ambulanter Dienste. 03id. p. 45

13? Bundesarbeitsgemeinschaft der FreienWohlfahrtspflege, (1984) ibid. p. 5

11" Juergens A. (1986) ibid. p. 1

Socialdata (1980) lid. p. 7016° Socialdata (1980) lid. p. 63: *75% receive help

from female family members*

"1 This is tnie also for those PA centers whichwere established by the disabilit/ movement. Asmentimied above, these centers (MID) were foundedas an alternative model of PAS to theliocialstationen" organized and developed by thewelfare organizations. Initially AHD organizers hadsome reservations about becoming a member of oneof the big welfare organizations. But since one condi-tion for receiving fkinds from the Leander governmentis such membership, the ideological attitude soongave way te a more pragmatic position.For more details see: Ruetter J. (1986) ibid.

111 Deutscher Verin (1987). ibid. p. 37

54

233 which, however excludes certain services suchas attendant referral, meals-on-wheels services.

Dentscher Verein (1987) ibid. p. 37Deutscher Verein (1987) ibid. p. 41

338 Deutscher Verein (1987) lid. p. 592°7 supra p. 21 et.seq.

"8 Deutscher VErein (1987) ibid. p. 90Deutscher Verein (1987) ibid. p. 80Ruetter J. (1986) ibid. p. 50

"1 Ruetter J. (1986) Ibid. p. 453°3 &letter J. (1986) il2id. p. 52so The case is now pending in court: Verwal-

tungsgericht (VW Kassel Aktenzeichen: V/3 F.2098/86; Verwaltungsgeriditshof (VG11] Hessmi, Ak-tenzeichen: 9 TP 1593/87 (W.Ger.)

IN Juergens A. (1988) "Rechtliche Abeicherungder Pflegebeduerftigeneine Posse mit 5 Geset-zesentwnerfen* in: Mayer A., Ruetter J. (ed.)Abschied vom Heim, AG-SPAK-Publikationen,Muenchen, p. 13

3" The Land Saarland recently changed its lawswith respect to primary education. In general,primary schools are now open for disabled children.But stall they do not have a right to integration. It isup to the school district's discretion whether or not togrant admission to a disabled child.The Land Berlin is considering enacting similarreform laws, while the Land Hessen plans to intensifythe child's restriction to segregated special education.

31" Except for Berlin, which because of its specialstatus has no conscientious objectors. There otherfmancial solutions had to be found.

I" In 1986 two such centers were founded inBremen and Hamburg.See: Mayer A., Ruetter J. (1988) Abschied voin Heim.

p. 153/167

WID drafted a model billThe Personal Assis-tance For Independent Living Act of 1988whichgoes in this direction. It may be hoped that theNational Council on the Handicapped will use thisdraft to influence fatnre personal assistance policy inthe United States.For the bill see: World Institute on Disability(February 19813) A Report to the National Council onthe Handicapped.... supra. pp. 46

9" supra. chapter I.B.olo supra. chapter V.A.

3I1 World Institute on Disability (Feb. 1988) AReport to the National Council on the Handicapped...,supra, p. 50 et.seq.

Bauer R. Dieenbacher H. (ed.) (1984) Or-ganerte Nachstenliebe, Opladen

Berkowitz E.D. (1988) Disabled Policy. America'sPolicy for the Handicapped Cambridge UniversityPress

Biesalzky K.(1928) Grundriss derKrappelfarsorge 3. Auflg. Leipzig

Bischoff H. Rathgeber R. (1987) Behinderung inAusbildung und Beruf. MOnchen

Bley H. (1988) Soziafrecht Frankfurt a.M.Bundesgemeinschaft der Freien

Wohlfahrtspflege (1984) Ambulante gesundheits-und sozialpflegerische Dienste der FreienWohlfahnsptiege, Bonn

Bundesregierung (1984),"Bericht der Bundes-regierung fiber die Lags der Pflegebederftigen",Bundestagadrucksache 10/1943

Carlsson BR. (1982) Social Welfare and Hand-icap Policy in Sweden The Swedish Institute, Sweden

Cole J.A. (1979) "What's new about IndependentLiving?' 10 Archieves of Physical Medicine andRehabilitation p.458

Commerce Clearing House, Inc. (1987) 1987Medicare Explained, CCH Editorial Staff Publica-tion, United States

Community Alliance for Special Education (1988)Special Education Rights and Responsibilities. SanFrancisco, CA

Costello J.C., Preis J.J. (1987) "Beyond LeastRestrictive Alternatives: A Constitutional Right toTreatment for Mentally Disabled Persons in theCommunity" 20 Loyola of Los Angelos Law Review,1572

Crewe N.M., Zola I.K. etal. (1983) IndependentLiving for Physically Disabled People, San Francisco,Washington, London, Jossey-Bass

DeJong G. (1978) The Movement for IndependentLiving: Origins, Ideology, and Implications for Dis-ability Researvh, Medical Rehabilitation Institute.Tufts - New England

Deutscher Verein ffir Offentiche und privatePersorge (1987) Bestandsaufnahme der ambulantensozialpflegerischen Dienste (Kranken- und Al-tenpfiege, Haus- und Familienpflege) im Bundes-

Schriftenreihe des Bundesministers far

Jugend Famthe, Prauen und Gesundheit. Band 195,Bonn

Die Grünen (ed.) (1985) 1995 - Ende derPflegeheime, Hamburg

Disability Rights Education and Defense Fund,Inc. (ed.X1981) Law Reform In Disability RightsVol.II, Berkeley, CA

Duncan B., Woods D. (1987) Social Security Dis-ability Programs: An International Perspective,World Rehabilitation Fund Inc. New York, N.Y.

Dybwad G. (1973) "Is Normalization a FeasiblePrinciple of Rehabilitation" in Models of Services forthe Multihandicapped Adult, United Cerebral Palsyof New York City Inc. New York, p.57

Forsberg M. (1984) The Evolution of Social Wel-fare Policy in Sweden, The Swedish Institute, Sweden

Foulds R. RESNA (ed.) (1986) Inteructive RoboticAids. One Option for Independent Living, WorldRehabilitation FNInd, New York, N.Y.

Gitter W. (1986) Sozialrecht 2. Auflg., MenchenHolgersson L., Lundstrom S. (1975) The Evolu-

tion of Swedish Social Welfare, The Swedish In-stitute, Sweden

Holtz K.L. (ed.) (1982) War's das? Eine Bilanzzum Jahr der Behinderten, Heidelberg

Mich I. (1976) Medical Nemisis: The Expropria-tion of Health, Pantheon, New York

Institut fiir Sozialforsehung und Sozialwirtschafte.V. Saarbrecken(1987) Modellprogramm "Am-bulante Dienste fifr Pflegebedarftige des Bundes-ministers far Jugend, Familie, Frauen undGesundheit. (Zwischenbericht der Wis-senschaftlichen Begleitung (Stand 31.12.1986)

Jergens A. (1986) Pflegeleistungen far Be-hinderte. Sozialpolitik und Recht Bd. 11, Kaln, Ber-lin, Bonn, Menchen

Kopp A., Fichtmer O., (1988) Bundessozialhil-fegesetz. Kommentar, 6. Auflg. Neuwied

LaFrance A. (1978) Welfiur Law: Structure andEntitlement Nutshell Series, St Paul, Minnesota

Laurie G. (1977) Housing and Home Services forthe Disabled, Harper & Row, Inc. Maryland

Leibfried S. (1979) "The United States and WestGerman Welfare Systems: A Comparative Analysis.'12 Cornell International Law Journal, p.175

Litvak S. etal.(1987)Attendirw to America: Per-sonal Assistance Servkes for Independent Living,World Institute on Disability (ed.), Berkeley, CA

Mayer A., Rutter J. (ed.) (1988) Abschied yamHam. Erfahrungsberichte aus Ambulanten Dienstenund Zentren far Selbstbestimmtes Leben, AG-SPAK-Publikationen, Munchen

Naticnial Council on the Handicapped (1986)Tbward Ind...-pendence. An Assessment of FederalLaws and Programs Affecting Persons with Dis-abilitiesWith Legal Recommendations. U .S .

Government Printing Office. Washington D.C.

Perl 0. (1926) Krappeltum und Gesellsch0 imWandel der Zeit, Gotha

Racine D. et. a (1986) Das soziak Netz in denVereinigten Staaten, U.S. Information Service, 2.Auflg. Bonn

Ratzka A.D. (1986) Independent Living and At-tendant Care in Sweden: A Consumer Perspective,World Rehabilitation Fund Inc. New York, N.Y.

Ratter J. (1986) Dk Entstehung und Entwkk-lung selbstorganisierter Ambulanter Hilfsdienste ftirBehinck r t e Materialmappe der AG SPAK, Nr.30E/86,Mt:inches

Schellhorn W., Jirasek H., Seipp P., (1988) Bun-dessozialhilftwesetz. Kommentar, 13. Auflg., Neuwied

Scott RIC (1984) From Good Will to Civil Rights,Temple University Press

Socialdata (1980)Anzahi und Situation z u Housekbender Pflegebedarfiger. Schrittenreihe des Bun-desministers Air Jugend, Familie und Gesundheit.Band 80. Stuttgart, Berlin, Köln Mainz

StAndige Deputation des 52. Dt. Juristentages(Hreg.X1978) Verhandlungen des 52. Dt. Juria-tentages. Bd.II (Sitzungsberichte). Munchen

Steiner G. (ed.) (1988) Hand- und Fubuch jurBehinderte, Frankfurt

Stoddard 8.(1978) 'Independent Living: Con-cepts and Program? 3 American Rehabilitation, p.2

Stolleis M. (1976) Quellen zur Geschichte desSozialrechta, Reihe: Quellensammlung zur Kultur-geschichte, Bd. 20 (Hrsg.: Treue W.) GOttingen,Frankfurt, Ulrich

SundstrOm G. (1987) Old Age Care in Sweden.Yesterday Today....ThmorowY The Swedish Institute,Sweden

The National Study Group on State MedicaidStrategies (1984) Restructuring Medicaid: An Agen-da fur Mange. (Background Papers)

The Swedish InstAtute (1988) 'Support for theDisabled in Sweden" Fact Sheets on Sweden (FS 87 fOhf)

The Swedish Institute (1987) 'The Health CareSystem in Sweden' Facts Sheets on Sweden (FS 76Vpb)

Tht, Swedish Institute (1987) *Social Insurancein Sweden' Facts Sheets on Sweden (FS 5 t OK)

The Swedish Institute (1987) 'Old Age Care inSweden' Facts Sheets on Sweden (FS 8 i Ohfe)

The Swedish Institute (1986) "Social WelfareLegislation in Sweden' Facts Sheets on Sweden (PS89 c Oe)

U.S. Bureau of the Census (Dec. 1987) StatisticalAbstract of the United States: 1988, 108th Ed.,Washington D.C.

U.S. Commission on Civil Rights (1983) Accom-modating the Spectrum of Individual Abilities,Clearinghouse Publication 81, Washington D.C.

U.S. Government Printing Office (1986) "SocialSecurity Programs in the United States ", SocialSecurity Bulletin, January 1986/V01.49, No.1

Vereinigung Integrationsibrdening e.V. (1982)Behindernde Hilfr ockr Selbstbestimmung der Be-hinderten?, Munchen

Wolfensberger W.(1973) The Principle of Nor-malization in Human Services Downsview: NationalInstitute on Mental Retardation

World Institute on Disability (April 1987) "Ex-ecutive Summary of the National Survey of Atten-dant Services Programs in the United States',Attending to America. Personal Assistance for Inde-pendent Living, Berkeley, CA

World Institute on Disability. (1988)A Report tothe National Council on the Handicapped onMeasures for Promoting Personal Assistance ServicesFor People With Disabilities. WID, Berkeley, CA

Zukas H. (1985) Surnmary of Federal FundingSources for Attendant Care. World Institute on Dis-ability, (ed.),Berkeley, CA

Zukas H., Leon J., Cone K. (1987) AttendantServices. Descriptive Analysis Of California's In-Home Supportive Services Program, World Instituteon Disability (ed.), 2d. Ed., Berkeley,CA

The World Instituteon Disability

The World Institute on Disability is public policy center that is run by perams with dimbilities. Its main geal isto use research, pukiic educatkm, training and model program devekipment as means to create a more accessible andmonth. society.

his* WID programs include:research into cost.efhctive personal assistance services and associated education about and programdevelopment of these service& Model legislation is also being developed. issues are addressed to includepeo* dell ages who need primal assistance services.research into wens to adequate health insurance ihr pm* with disabilities and guidelines ilw improvement.

training and public edneathn on development of independent living, its philosophy and related services; ceidisability-related laws and regulationg and on making public transit more accessible.

actions to Wage the gap between older Americans and the younger disabled community, in order to exchanpexpefftise and join forces br change.The World Institute cm Disability serves as a center fir the international exchange of inibrmation and expertise

and provides training and technical assistance to individuals, cavanizations and governmental representatives fromevery centhrent. It is particularly interested in fostering the independent living movement and functioning as a &rumbr the exchange *Immediate* on how the self-help precepts of this movement can be adapted and applied in ditbrent=Rims throughout the workl.

In addition to its other activities, on a file basis WID arranges itineraries and training sessions for foreign visitors.

World Institute on Disability510 16th *reit, Oakland, CA 94612 USA

Phone: (510) 7634100 / Fax (510) 763-4109vimanus Project staff are Judy Heumann, principal investigator, Mark Conly, director.

Rehabilitationinternational°

Rehabilitation International is a federation of national, regional and international organizations and agenciesworking together to proste the prevention ci disability, the rehabilitation of disabled people and the equalization ofopportmiliss far &. peopl. and their families. RI is currently composed of 150 organizations loading disabilityprevention end rehabJltation servke development in 89 nations in all the world's regions.

Elioriginated the International Symbol of Awes" the universal signpost of architectural accessibility for disabledpersons

the world's most varied and comprehensive output ci periodicals and reports on disability issuesruling the International Rehabilitation Review, the International tIosmud of Rehabilitation Research,

Rshabilitaciors and Ons-in-reaorganizes quadrennial World Congrlies and regional conferenceshas consultative status with the United Nations, UNICEF, UNESCO, the International Labor Organizalion,the World Health Organization and other international and regkmal bodiesdistributes information regularly in more than 125 countriescarries out international research projects and studies. Currently the RI/UNICEF Technical Support Programis involved in on-going studies on the situation of children and women disabled in armed conflict

Rehabilitation International25 Zest 21st Street, New York, NY 10010 USAPhtnia (212) 420-1500 / TDM (212) 420-1752

Cables: INTRICHAB / Tele= 446412 / Fa= (212) 505-0871RIJIDEAS Prcdect staff are Barbara Duncan, information specialist, Kathy Marchael, project officer, and Lamar

Coale, Spaniah language specialist.

63