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Measuring Parental Attitudes Toward Deinstitutionalization: A Measuring Parental Attitudes Toward Deinstitutionalization: A

Historical Perspective Historical Perspective

S Joelle Tannehill Augsburg College

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,4-UGSBURG

C-O-L-L-E-G-E

MASTERS IN SOCIAL WORK

IHESIS

MSW

ThesisS. Joelle Tannehill

Tanneh

Measuring Parental Attitudes Toward

Deinstitutionalization: A Historical Perspective

1994

MEASURING PARENTAL A'["['ITUDES

TOWARD DEINS'['ITUTIONALIZATION:

A HIS'['ORICAL PERSPECTIVE

SUBMIffED

BY

S. JOELLE TANNEHILL

IN PARTIAL FULFILLMENT OF THE

REQUIREMEN'['S FOR THE DEGREE

MASTER OF SOCIAL WORK

APRIL, 1994

r:Augsbiirg Colle0 '-..George Sverdrup LibMinneopolis, MN 55454

Augsburg Collegi

George Sverdrup Ltbrerj

Mirtneor+r+li5, *N 55A5A

MASTER OF SOCIAL WORK

AUGSBURG COLLEGE

MINNEAPOLIS, MINNESOTA

CERTIFICATE OF APPROVAL

This is to certify that the Master's thesis of:

S. JOELLE TANNEHILL

has been approved by the Examining Committee forthe thesis requirements for the Master of SocialWork Degree.

Date of Oral Presentation: April 20, 1994

Thesis Committee

Thesis Advisor

TO

MY PARENTS

MILDRED AND CLIVE CLEARY

ACKNOWLEDGEMENT

This study would not have been possible without the

love, support, and encouragement of my family. I would

especially like to thank my sister Ann, my brothers Tom,

John, Pat, and Mike whose belief in the value of higher

education was an inspiration to me. To my children,

Theresa, Bill, Chris, Rick, and Matthew, thank you for your

love and support. I love you all very much. Finally, to my

husband Ken, without whose patience and support I never

would have finished. Your belief in my ability has been a

source of great strength. You have my undying love and

gratitude.

ABSTRACT OF THESIS

MEASURES OF PARENTAL ATTITUDES

TOWARD DEINSTITUTIONALIZATION:

A HISTORICAL PERSPEC'['IVE

APRIL 20, 1994

This paper places into an historical perspective the

policy of deinstitutionalization of persons with mental

retardation and its attendant affect on families.

Historical analysis shows that institutional care for

persons with mental retardation springs from societal and

philosophical forces. The implication of the concepts of

normalization and least restrictive setting are discussed in

relation to deinstitutionalization with the conclusion that

administrators, policy makers, and people that work in the

mental retardation field must pay more attention to the

rights and feelings of families with relatives who are

mentally retarded. This paper also reviews eight studies

done on parental attitudes toward deinstitutionalization to

determine whether or not the questionnaire used produced a

valid measurement.

iii

TABLE OF CONTENT

CHAPTER INTRODUCTION

Purpose of Study

Framing the Issue

CHAPTER II. HISTORICAL PERSPECTIVE

Institutionalization

Deinstitutionaliz ation

Community-Based Services

AdvocacyPresidential Involvement

Legislation and the Courts

Role of Academia

Minnesotas' Role

Summary

CHAPTER III. LITERATURE REVIEW

Studies of Deinstitutionalization

Pre-Placement

Ideology

Decision Reversal

Adequacy of Community Services...

Process of Deinstituionalization.

Permanence of Cornrnunity Setting.

Post Placement

Minnesota and Community Placement.

1

9

42

CHAPTER IV. SUMMARY, CONCLUSIONS, AND RECOMMENDATIONS

CHAPTER

Summary

Conclusions

Recommendations

V. FUTURE TRENDS 63

APPENDICES 66

APPENDIX A

APPENDIX B

APPENDIX C

MARSH SURVEY

SPARTZ SURVEY

PENNHURST SURVEY

REFERENCES 86

TABLE OF APPENDICES

Appendix A

Appendix B

Appendix C

Marsh Survey

Spartz Survey

Pennhurst Survey

Pre /Post

67

70

76

1

CHAPTER I.

Introduction

Throughout history society has viewed people with

mental retardation (which is generally accepted to be

approximately three percent of the population) in a

variety of ways. They were removed from view and seen as

needing constant care, protection, and supervision.

Although historically the family has been the primary

caregiver the states have also had a role in providing

care and services.

It has been more than a century since the

establishment of the first public residential facility

for persons with mental retardation. Built and

maintained by the state these facilities (i. e.

institutions) were large and geographically isolated.

Research indicates that in any historical era no more

than 10% of people with mental retardation resided in

institutions: Eyman, Grossman, Tarjan, & Miller study

(cited in Marsh, 1992); Byers study (cited in Adams,

1971)

Today's social policy, deinstitutionalization,

emphasizes the movement of people from institutions into

2

alternative community living arrangements closer to their

family. The assumption on the part of mental retardation

professionals, advocates, and human service planners has

been that the principles of 'least restrictive' and

'normalization' are the right and only humane alternative

to institutionalization.

Beginning in the 1960's, fueled by the indictment

against public institutions, the development of parent

advocacy groups, and the acceptance of the principle of

normalization, i.e. all people regardless of their

disability are entitled to the opportunity to live, work,

and play in culturally and socially normative settings

(Wolfensberger, 1972), deinstitutionalization has been

accelerating creating rapid growth in community based

facilities and the transfer of thousands of people from

large state facilities into smaller community-based homes

(Vitello & Soskin, 1985) The initial group to move,

consisted of those people who were younger with mild to

moderate retardation (Report on the changing role of

regional treatment centers for persons with developmental

disabilities, 1989) Left behind were those people more

severely impaired with multiple disabilities.

3

Insert Figure I about here

To determine whether or not community based living

is the best alternative for people with mental

retardation it is necessary to have a solid base of

knowledge and greater insight into family attitudes

toward community placement. To deinstitutionalize in a

way which considers the welfare and emotional health of

those persons who are institutionalized, the needs and

desires of both consumer and their family must be

addressed by social workers, advocates, and mental

retardation professionals. A positive response from the

family regarding the question of cornrnunity placement can

be of significant benefit in providing a smooth

transition for their relative from institution to

community. In a time of limited financial resources

family input into what services they feel are most

important to their relatives health and happiness should

be considered.

4

i 80000

151,112

140000

120000

119,335

100000 94 675

87,691

79 40780000

60000

40000

20000

1977 1982 1987 1989 1991

N pt<orouxo € SEVERE E MODERATE € BORDERLINE/MIL[

5

Figure Caption

Figure 1 Level of retardation of residents of state

institutions on June 30 of selected years, 1977-1991

6

Purpose of Study

"Stereotyped thinking about mental retardation

is disappearing gradually, but a residual lingers

in the reluctance in some quarters of the social

work profession to invest resources in the care of

the retarded... In general the mainstream of social

work in America has not demonstrated a concern for

retardation... Social work is inevitably a potent

force for promoting new trends in social

development. . . . " ( Adams, 19 71, p. 53 )

The purpose of this study is to place in an

historical context the rationale behind the growth of

institutions for persons with mental retardation and the

more recent effort toward deinstitutionalization. It is

our responsibility as social workers to understand the

circumstances that have been responsible for excluding

people with mental retardation from the mainstream of

American life and receiving the kinds of services to

which they are entitled. It is through studying the

historical landscape of events that keeps history from

repeating itself. It is hoped that this study will

encourage the profession of social work to coanit its

substantial resources (i. e. intellectual commitment,

values, and manpower) into securing a better life for

people with mental retardation and their families.

In addition, this paper will review a number of

studies that have been conducted that address the issue

of parental attitudes toward the deinstitutionalization

7

of a family member. The trend in the last 25 years has

been to move persons with mental retardation from large,

state-operated institutions to small community based

residential settings often as the result of legal action

(see, for example, Pennhurst, Willowbrook, and Horacek v.

Exon). Although there have been a number of quantitative

studies done to ascertain how parents feel about the

movement of their child to the community I could find no

studies that specifically looked at the survey instrument

to see if it does in fact measure parental attitudes.

The results of this study will provide important

information to future researchers who are looking for a

survey instrument that will measure what they intend to

measure, specifically parental attitudes.

Framing the Issue

"The moral test of a government is how it treats

those who are in the dawn of life, the children;

those who are in the twilight of life, the elderly;

and those who are in the shadow of life, the sick

the needy, and the handicapped. " Hubert Humphrey

The principles underlying deinstitutionalization can

only be understood by examining the evolution of social

systems in the United States for the care of persons with

mental retardation (Vitello et al., 1985) Wolfensberger

(1975) suggests that society's responses to retardation

8

were not specific but were part of a more general pattern

of response to deviance. The degree to which society

responds to an individuals' disability, whether that

disability is mental retardation or some other

disability, can be determined by two factors: (1) "the

level of specialized knowledge which makes it possible to

identify the nature of the handicap or social problem;

and (2) the level of social development achieved by that

society, particularly as this is reflected in the climate

of opinion regarding the vulnerable and weak" (Adams,

1971, p. 16)

The predominating social values of the times will

directly affect society's attitudes toward people with

mental retardation. These attitudes may be one of

compassionate concern for the adverse effect mental

retardation has on the person, or it may be an

overwhelming fear that the person may be a threat to the

larger society (Adams, 1971).

Studying successive patterns of care for persons

with mental retardation will illustrate the development

of social services in the United States. It will also

reveal the different "social philosophies underlying

philanthropic endeavors, the social welfare programs

these have given rise to, and the trends now emerging

that will dominate the future scene" (Adams, 1971, p.

17 )

g

Marsh (1992) delineates three phases that mental

retardation has gone through: institutionalization;

deinstitutionalization; and, currently the cornrnunity-

based services phase. Each has had its own impact on the

people with mental retardation and their families.

CHAPTER II.

Historical Perspective

Until recently, people with mental retardation were

viewed by the public, mental health professionals, and by

many parents as deviants, sub-humans, and a menace to

society (Wolfensberger, 1972) They were hidden from

view by their families and seen as needing constant care

and supervision. The prevailing belief, at the time, was

that people with mental retardation could never change,

grow, or become contributing members of society.

Prior to and during the colonial period the care of

persons with mental retardation fell to their family,

both nuclear and extended. Often neighbors took over the

responsibility for that care when the family was no

longer able to provide for the person (Vitello et al.,

1985) Prior to 1820, the local government allocated

small amounts of financial assistance (outdoor relief) to

10

families and relatives of the mentally retarded so that

they could keep them at home (Scheerenberger, 1983a)

Increased immigration coupled with rapid economic

expansion in the beginning of the nineteenth century

heightened the publics' concern about the number of

"dependent and deviant individuals in the cormnunity"

(Vitello et al, 1985, p. 67) Stigmatized, families of

the mentally retarded had few options except to keep them

hidden in their home. The changing social and economic

demands placed on the family made it more difficult to

care for the mentally retarded at home. Early in the

19th Century saw the "indiscriminate placement of

retarded [sic] people in almshouses for the poor, asylums

for the mentally retarded, and penal institutions for

criminals" (Vitello et al., p. 70)

No central government existed in the American

colonies until the beginning of the Republic in 1789

(Jansson, 1988) The role of the federal government in

social welfare programs was nonexistent because people

believed that such programs belonged exclusively to local

government. This 'localistic' nature of the new society,

impeded the development of a national solution to social

problems (Jansson, 1988) Intensification of efforts to

have the national government provide federal aid for the

care and treatment of the mentally ill and people with

mental retardation during the early years of the

11

nineteenth century was led by the leading reformer of

that era Dorothea Dix (Trattner, 1974) In 1854,

Congress passed a bill authorizing the federal government

to give the proceeds from the sale of federal land to the

states to help build and maintain mental institutions.

President Franklin Pierce, however, vetoed the bill

believing it to be unconstitutional and an infringement

on states' rights. "Federal involvement in social

welfare, while not eliminated, was retarded for years to

come" (Trattner, 1974, p. 63)

The first significant indication of concern for

people with mental retardation occurred toward the middle

of the nineteenth-century. The growth in philanthropic

and scientific endeavors on behalf of persons with mental

retardation came as a result of a new movement in

psychological medicine that was developing in Europe

(Adams, 1971). "Positive rehabilitative and humane

treatment. .began to replace the deterrent management"

that was in use at the time (Adams, 1971, p. 17) It was

during this time period that the psychiatric community

first differentiated between mental illness and mental

deficiency stating that mental deficiency was

'irreversible' (Balthazar & Stevens, 1975, p. 16)

12

Institutionalization

.a deindividualized residence in which persons

are corugrergated in numbers distinctly larger

than might be found in a large family; in

which they are highly regimented; in which

the physical or social environment aims at

a low cormnon denominator; and in which all

or most of the transactions of daily life

are carried on in a largely segregated

fashion." (Wolfensberger, 1972, p. 81-82).

The original goal of the 'institutional model'

was to teach residents the skills necessary to

successfully function in society. The work of Itard and

Seguin challenged the current belief that the retarded

could not learn and had no potential for growth. Itard,

in 1798, theorized that he could restore to normalcy a

'defective boy' through educational principles (Balthazar

et al., 1975) Although he did not succeed his theory

continues to have significant influence in the area of

mental deficiency. Seguin, a pupil of Itard's, thirty

years later, further defined and extended Itard's methods

in such a manner as to "provide the foundation for

contemporary programs in the educational training of the

mentally retarded" (Balthazar et al., 1975, p. 21)

Americas' increased interest in the rehabilitation

of children with sensory handicaps, such as deafness and

blindness, led physicians to consider the related

condition of mental defect. The establishment with state

funds of an experimental school for idiots [] within

13

the Perkins Institute for the Blind in Boston in 1848 was

the first sign of public concern in the United States

(cited in the President's Committee on Mental

Retardation, 1977). The experimental school became the

Massachusetts School for Idiotic and Feebleminded Youth.

By the turn of the century nineteen states had set up

twenty-four institutions for children of school age who

exhibited some potential for training and eventual

rehabilitation in the community.

The era of institutionalization began when reforms

were undertaken to improve the care of people with mental

retardation. In 1850 the needs of persons with mental

retardation were separated from those of other dependent

groups (i.e., the delinquent, the young, the mentally

ill) (Trattner, 1974) Through the efforts of Dr. Samuel

Gridley Howe of Massachusetts the first state hospital

was built with state appropriated funds. A humanitarian,

Howe hoped to apply the educational techniques (i.e.,

moral treatment and the physiological method) of French

educators Itard and Seguin. The goal was to 'reintegrate'

the person with mental retardation into society through

education and training (Balthazar, et al., 1975, )

During this period two principles gained importance:

(1) the principle of capacity for change (i.e. the belief

that through the proper education and training people

with mental retardation would be able to support

14

themselves); and, (2) the principle of separation and

diffusion (i.e. that there should be separation of people

with mental retardation from other people with mental

retardation, and that they should be allowed to live

among the 'normal' population) (cited in President's

Committee on Mental Retardation, 1977)

At the end of the 19th Century a number of special

services for persons with mental retardation began. This

was a period of general optimism concerning the

advancement of social, political, scientific, and moral

qualities of society. "This spirit favored the

development of numerous social institutions and services

including schools for the blind, deaf, and mentally ill

persons. (Zigler, Hodapp, Edison , 1990, p. 2)

Industrial training became part of most

institutional programs and the original objective of

educating those who were potentially independent for a

return to normal life within the community emerged as a

new part of industrial rehabilitation (Adams, 1971) The

primary reason that these progressive efforts failed was

the harsh and chaotic social conditions that prevailed

outside the institution at that time. It has been argued

that institutions of nineteenth-century America were

developed as a response to the failure of communities to

meet the needs of people with retardation, but this is

only partially true, .since the failure was in the

15

absence of programs and services and not a failure of

actual cormnunity services" (cited in The community

imperative: A refutation of all arguments in support of

institutionalizing anybody because of mental illness,

1979, P. 3)

Increasing admissions, social, and economic forces

combined to transform what were once small residential

schools into custodial asylums. The nature of

institutions changed from single to multipurpose.

Institutions became the solution to community problems by

providing education, industrial training, long-term

custodial care for incompetent adults and the medically

handicapped of all ages. The belief that persons with

mental retardation must be sheltered from soc5ety was

also instrumental in creating the shift from temporary

placement to long-term custodial care. Social welfare

policy now focused on the protection of society from the

"feared characteristics of what was considered to be

defective mental and moral stock" (Schodek,

Liffiton-Chrostowski, Adams, Minihan, and Yamaguchi,

1980, p. 68)

In reflection we may ask why, at a time when social

services for the general public were in their early

developmental stages and mainly supported by private

philanthropy, was there such compassion and concern for

persons with mental retardation? Adams (1971) suggests

,m€.6i,':9rR';i;i;'; ":f=j'!O=,78 Ubvary

16

two possible factors: (1) "humane and sensible form of

social welfare is to be found in the fact that education

was always highly prized in America" (p. 24) The early

programs were based on educating people with mental

retardation in an effort to prepare the person for

integration into society. Even as a young Republic,

education was highly valued by the American people. It

didn't matter whether that education was given through

traditional educational methods or by way of vocational

training. Another reason suggested by Adams (1971) is to

regard it as a "rare demonstration of humanitarian

thinking, and of cornrnitment and responsibility,

reflecting certain features of the social history of the

time" (p. 24) Americans' had embraced freedom and a

belief in the potential of all people to rise above their

own deficiencies. Idealistic in thought, Americans'

showed deep concern and compassion for the suffering and

the socially disadvantaged,

Unfortunately, despite increasing wealth and

productivity the complexities of the industrial

revolution had appalling social side effects causing

these progressive efforts to fall short of their goal.

Urbanization led to the growth of cities with

concentrations of poverty, disease, crime, and human

misery in their slums. Women and children were exploited

as more and more workers were needed to provide cheap

17

labor. "A vast array of social pathology resulted from

the rapid and severe dislocations in patterns of living"

(Adams, 1971, p. 25) The way of dealing with these

social problems was through harsh repression. By 1920,

the number of persons in state institutions had risen

sharply to 501000 (Adams, 1971)

By 1900, persons with mental retardation were viewed

as a social problem and a threat to cornrnunity welfare.

Large institutions were built as a method of social

control and a means of protecting the people.

Professionals called for permanent placement and the

sterilization of residents (Adams, 1971)

Social control of the 'feebleminded' [sic], who were

feared for what they might do to society because of their

'destructive patterns' of life, became the dominant theme

(Adams, 1971) Attempts to implement control through

sterilization laws began in 1907. Society believed that

there was no evidence that environmental conditions

played a role in "feeblemindedness [sic] or to reversible

emotional, social, and behavioral problems" (Balthazar et

al., 1975, p. 129) This belief grew out of the work of

Mendel whose theory of hereditary transmission (i. e.

that there was a genetic link to mental defectiveness)

was widely accepted. Society also believed that the key

in fighting crime, pauperism, and prostitution was to

prevent feeblemindedness [sic] through the involuntary

18

sterilization of persons with mental retardation

(Trattner, 1974)

"It was soon recognized that sterilization, in

order to reduce the number of the retarded [sic]

to an appreciable extent, had to be compulsory,

and such laws were passed throughout the nation

and generally upheld by courts"

(Wolfensberger, 1975, p. 40)

By 1926 sterilization statues had been passed in 23

states (Baumeister, 1970)

Society in 1926 did not have the advantage of

history to inform them that sterilizing people with

mental retardation would have little, if any, impact on

the numbers of subsequent individuals with mental

retardation. As an example Germany, under Hitler, tried

to purify the German race. Today, Germany has the same

percentage of people with mental retardation in the total

population as there was before the atrocities began (E.

Skarnulis, personal communication, April 20, 1994)

The impracticality of housing so many people became

evident and a system of letting residents work outside

the institution (colony plans) helped relieve the

overcrowding. The colony plan was a way of providing the

social protection that people felt persons with mental

retardation needed while utilizing their considerable

manpower for production (Trattner, 1974) With this

ig

'deinstitution' movement came the reports that people

were doing better outside the institutions.

Goffman in his book Asylum writes about the

' culture' of the institution in which interactions

between inmates (Goffmans' terminology for patient) and

other inmates or treatment staff drops precipitously

within the institutional environment. Where patients

lives are managed become routinized, degraded, and

devaluated (Goffman, 1961) Prolonged institutional

living thus robs a person of their personhood, fosters

dependency, and leaves a human being with no sense of

self.

Adams (1971) looks at the forces that were working

that slowed America's progressive trend. "Again, the

explanation for these atrophied services seems to lie in

external events, particularly in sociopolitical factors.

"The Great Depression, which ravaged the economy with

singular destructiveness plunged almost the entire

wage-earning population into economic dependency" (Adams,

1971, p. 44) This led to an increase in the number of

low functioning individuals on relief and a higher number

of children placed into institutions because mothers were

needed to work (Adams, 1971)

20

Minorities and Institutionalization

Studies reviewed for this paper illustrate an

important statistic. The racial composition of those

institutions is approximately 80% White and 20% Non-white

(i. e. African American, Native American, Hispanic etc. )

It appears that minorities were less likely to consider

out-of-home placement for their dependent relative.

Heller and Factor (1988) in a study of cross-racial

permanency planning for older adults with mental

retardation who had not been institutionalized found that

Black parents were less likely to have planned for future

living arrangements and were also less likely to have

made future financial plans. "The differences were

attributed to socioeconomic rather than cultural factors"

Heller et al., study (cited in Kaufman, Adams, &

Campbell, 1991, p. 294)

This may be an accurate appraisal of why Non-whites

are statistically underrepresented in state institutions

but it is also true that many cultures, especially

African American and Native American have a cultural

tradition whereby the family, including the extended and

tribal family, take care of their own.

Another factor is the history of racism in this

country which has traditionally excluded members of other

races and ethnic background from accessing appropriate

services. The fact that institutions were built in

21

isolated rural areas which made it impossible for

families to visit their relative may also have

contributed to a negative response when asked about

insitituionalization.

Deinstitutional ization

Historical analyses by Lakin, Bruininks, and Sigford

(1981) indicates that concurrent with the institutional

era a system of cornrnunity care was being established in

the United States. The emphasis on 'rehabilitation' and

community placement created what has been called the

'first wave' of the deinstitutionalization movement

(Vitello et al., 1985)

This first wave occurred between 1900-1920 when

there was an attempt to move the mentally ill from state

institutions to the community under the mental hygiene

program. The goals of the mental hygiene movement were

threefold: (1) asylums would be places of treatment not

places of custody; (2) prevention of mental illness

through education in the principles of mental hygiene;

and, (3) provi.sion of services within the community that

would offer treatment to people with retardation

(Rothman, 1979) These goals were never realized for a

number of reasons including the concerted effort by state

hospitals to undercut implementation of the mental

hygiene movement (Rothman, 1979) Early efforts were

22

also styamied by many parents of children with mental

retardation who were sensitive to criticism that they

were not carrying for their child at home.

Despite new knowledge about the psychological

aspects of retardation, which led to the belief that

people with mental retardation could be 'trained',

institutional populations continued to grow so that by

1969 there were 194,650 people in public institutions.

Increase in institutional population was attributed

to: (1) medical science, where advances in medicine had

resulted in reduction of infant mortality; (2)

institutional care which had become a well-established

social institution; and, (3) the idea of the 'fearsome

defective' which had been infused into the American

consciousness (cited in Presidents Committee on Mental

Retardation, 1977)

The move to provide alternatives to institutional

care began in the early sixties. "Institutions were

attacked as human warehouses, incapable of delivering

decent treatment, and worse, as places that robbed those

that reside there of dignity and independent will"

(Bradley, 1980, p. 82) Deinstitutionalization has

resulted in a decrease in the number of persons with

mental retardation residing in state operated institution

of 114,381 between 1967 and 1991 (Lakin, Blake, Prouty,

Mangan, Bruininks, 1993) The deinstitutionalization

23

movement has had an enormous impact on public policy and

social attitudes concerning mental retardation.

Development of community resources has resulted in

improved services and supports for those who are

transferred from institutions. Despite this, many

professionals feel that the resulting cornrnunity-based

care has a number of shortcomings (Marsh, 1992) Those

concerns center around the lack of a full continuum of

cornrnunity-based services (a concept that has since fallen

into disfavor with professionals in the field) ; lack of a

defined plan for cornrnunity services; insufficient

comunity funding; and a shortage of well trained and

qualified personnel (Marsh, 1992)

Braddock (1977) suggests that by definition

deinstitutionalization is dependent on the availability

of "comprehensive, cornrnunity based alternatives to

institutional care" (p. 80) To place individuals into

the community without provisions for services, only

serves to 'depopulate' the institution and does nothing

to prevent readmission.

Insert Figure 2 about here

24

1960-1975 1976-1985

W SERIES I (ACTUAL)

1985-1990

N SERIES 2 (PROJECTED)

1991-1995

25

Figure Caption

Figure 2 U S closures and projected closures of state

xnsitituions - persons with MR/DD

26

Community Based Services

In 1965, Medicaid was enacted as Medical Assistance,

Title XIX of the Social Security Act and ushered in the

growth of community based services. Medical Assistance

provides governmental assistance in the form of

federal-state matching funds. Initially, while some

people with mental retardation were included under

Medical Assistance others, namely those in public mental

retardation institutions continued to be excluded. One

exception to this exclusion were adult residents of

nursing homes, including facilities serving people with

mental retardation who could become qualified for

Medicaid participation if the homes met certain

qualifying standards (Lakin et al., 1993)

Title XIX created incentives for the states to: (1)

continue spending large amounts of money on improving

their mental hospitals, (2) convert their public

institutions into medical institutions (i. e. Skilled

Nursing Facilities (SNF); and, (3) transfer people with

mental retardation to private nursing homes (Lakin, et

al., 1993) The effects of this policy was an increase

in the numbers of people with mental retardation placed

inappropriately into nursing homes. These nursing homes

often provided more medical services than people needed

to the exclusion of developmental prograrnrning (Lakin, et

al., 1993)

27

The cost of maintaining these nursing homes

escalated leading to the development, in 1967, of the

less medically oriented and less expensive Intermediate

Care Facility (ICF) program for the elderly and disabled

adult. The SNF and ICF programs were combined in an

amendment authorizing federal funds for intermediate care

specifically to facilities for people with mental

retardation. The National Association for Retarded

Citizens along with a number of directors of state mental

health agencies lobbied for passage of the Intermediate

Care Facilities for the Mentally Retarded (ICF-MR)

amendment and consider it the culmination of an

effective lobbying effort (Bruininks, Kudla, Hauber,

Hill, Wieck, 1981)

Advocacy

"Revolutions begin when people who are

defined as problems achieve the power

to redefine the problem" John McKnight

Although there were isolated groups of families who

had relatives with mental retardation scattered

throughout the United States it was not until 1950 that

the first parent organization was formed. The National

Association of Parents and Friends of Mentally Retarded

Children (later called the Association for Retarded

Citizens, and now simply referred to as the Arc) began in

Minnesota with 40 individuals from thirteen states. The

28

first activity undertaken as an organization was to lobby

for institutional reform and more humane treatment of

persons with mental retardation. Reacting to a recently

published photographic essay, "Christmas in Purgatory" by

Blatt & Kaplan (1966) and the television documentary

"Willowbrook" (a 5fOOO bed institution in New York), the

parent and consumer advocacy group pushed for standards

of 'normalization' as criteria for evaluating existing

programs.

While there were long waiting lists for admittance

to public institutions conditions within the institutions

were becoming intolerable. Physicians and other

professionals continued to push parents to put their

children into institutions by speaking of the

incurability of their childs' condition. Parents and

their children with mental retardation continued to be

stigmatized by the rest of society.

Presidential Involvement

Historically, the deinstitutionalization of the

mentally retarded was part of a larger social reform

movement that began with the Kennedy administration and

continued through the 'Great Society' and the Nixon

administration in 1970. President Kennedy formed a

special panel to "prescribe a program of action in the

field of mental retardation" (cited in President's

29

Committee on Mental Retardation, 1977, p. 45) Reform

was further encouraged by the report of the President's

Panel on Mental Retardation in 1962, the community health

movement, and a concern for human and civil rights. The

Panel reported the need for legislation that would

provide federal dollars for the construction of community

facilities that would help alleviate the qrowi'mg shortage

in this area. In 1963 the Mental Retardation Facilities

Construction Act became law. Unfortunately, only 610

million dollars was appropriated for the construction of

new facilities and .during the course of the next ten

years, only !>90 million was actually spent for the

purposes authorized" (Braddock, 1977, p. 11)

Subsequent increases in federal spending for human

services, especially Title XIX (Medicaid) resulted in an

ideological shift in thinking about residential

prograrnrning for people with mental retardation. The

impetus was away from institutions toward the development

of a 'continuum of care' with services to be provided in

the community located as close to the persons family home

as possible.

President Nixon continued the federal governments

role in the mental retardation movement by committing the

government to a return from institutions one-third of the

more than 200,000 persons with mental retardation to the

community (Braddock, 1977) Although no new legislation

30

was passed President Nixons' endorsement of

deinstitutionalization was important to the realization

of that goal (Braddock, 1977) In 1970, President Nixon

signed the Developmental Disabilities Act which . gave

significant new directions to mental retardation

prograrnrning" (cited in President's Committee on Mental

Retardation, 1977, p. 95)

Legislation and the Courts

The civil rights movement for the mentally disabled

began in the 1970's with judicial activism. A number of

landmark legal decisions have been reached since 1971.

These decisions include the "right to treatment and

protection from harm, the right to educational

opportunities, exclusionary zoning, and commitment which

have framed critical social policy questions before many

courts" (Braddock, 1977, p. 14) Vitello et. al, (1985)

stated that "litigation was brought to obtain for

retarded persons [sic] a right to habilitation in the

least restrictive setting" (p. 32)

Brought before the courts as class action suits the

first case involved the Pennsylvania Association of

Retarded Citizen v. Commonwealth of Pennsylvania which

grew out of the "association's concern for the residents

of what was then the Pennhurst State School and Hospital"

(Wilson, 1980. p. 75) The Consent decree handed down as

31

a resolution to the Pennhurst litigation required that

the Cormnonwealth of Pennsylvania search out and find all

children requiring special education and provide those

educational services appropriate to their needs (Wilson,

1980).

Among the other cases were: Wyatt v. Stickney, 1972

in which it was determined that no borderline or mild

person with retardation shall be a resident of the

institution; Welsch v. Likins, 1974, which gave persons

with mental retardation the right to individualized

treatment in the least restrictive environments;

Youngberg v. Romeo, 1982, the right to safe living

conditions and freedom from unnecessary bodily

restraints, including confinement; (Minnesota Department

of Human Services, 1989). In the Pennhurst case the

presiding Judge Broderick stated:

"Pennhurst as an institution for the retarded

is a monumental example of unconstitutionality

with respect to the habilitation of the

retarded. As such it must be expeditiously

replaced with appropriate coununity based

mental retardation programs and facilities

designed to meet the individual needs of

each class member" (Halderman v. Pennhurst State

School and Hospital, et al., 1978).

Treatment in the 'least restrictive environment' and

'normalization of services' (Wolfensberger, 1972) became

the focus and the commitment of the professional

cormnunity. "Implicit in the success of normalization

32

efforts is the assumption that retarded individuals [sicl

benefit from such involvement by becoming integrated into

the community" (Ferrara, 1979, p. 145) This inclusion

implies that people with mental retardation will benefit

from such involvement by becoming integrated into the

cornrnunity (Ferrara, 1979) Deinstitutionalization has

continued at a steady pace over the past two decades.

rhe Role of Academia

The role of academia has been an important and an

extensive one in the deinstitutionalization movement.

The Courts have often called upon members of the Academic

cormnunity to monitor the process in an effort to protect

the rights of the people with mental retardation, their

families, and the integrity of the Court.

An example Dr. James Conroy was the Principal

Investigator of the Pennhurst Longitudinal study as well

as many other studies over the last 15 years is D-xrector

of Research and Program Evaluation at Temple University

in Pennsylvania. His studies have done much to instruct

legislators, judges, program administrators, policy

makers, and other researchers. His survey instruments

are widely used by other researchers.

In Minnesota we have a number of nationally

recognized authorities on cormnunity-based services,

institutional living, and the deinstitutionalization

33

process. Professor K. C. Lakin at the University of

Minnesota and his staff have done extensive research in

the State of Minnesota and elsewhere on the impact of

deinstitutionalization on the institutions, the people

that work there, and the people with mental retardation

who reside within those walls. He is widely quoted in

journal articles and books and has provided valuable

information and ideas to the study of the readjustment

process of persons released from institutions for people

with mental retardation and/or persons placed in

cormnunity based facilities from non institutional

residences.

Dr. Edward Skarnulis of Augsburg College has

appeared before the United States Senate to testify about

the effects of deinstititionalization on people with

mental retardation. He is consultant on the closing of

Hisson State Hospital in Oklahoma.

In the books and journal articles used for this

paper nearly 85% were written by or co-authored by people

that are people that are affiliated with some of the

United States foremost colleges and universities. In the

years to come academia will continue to lead the way by

providing important information to the social work

profession in how best to address the needs of this

population.

34

Minnesotas' Role

Minnesota, a recognized leader in residential

programs for persons with mental retardation, has

mirrored the rest of the country in that its institutions

were large and geographically isolated. The Faribault

State School and Cambridge State Hospital were the only

two state operated programs until 1950. Regionalization

of services continued for the next two decades

culminating with the last hospital based unit to open at

Willmar in 1973.

In 1962 the number of persons living in Minnesota's

state hospitals was 61200, by 1988 that number had fallen

to 1,461 (Minnesota Department of Human Services, 1989)

There are currently, seven regional treatment centers

operating in Minnesota.

Insert Figure 3 about here

The process of moving institutionalized individuals

with mental retardation to the community has often

evolved without addressing the needs, desires and

attitudes of the families of those persons with mental

retardation. This has occurred because institutions have

been court-ordered to deinstitutionalize and because

state and federal dollars have gone into the development

and expansion of cornrnunity based services.

35

2500

2000

1500

1000

500

o

36

Figure Caption

Figure 3. Total Average daily census. Statewide DD

Programs.

37

The theoretical framework surrounding the

development of institutional care for people with mental

retardation and the current policy of

deinstitutionalization can be surnmarjzed as follows. The

extent to which society responds to an individuals

disability is determined by two factors : (1 ) how much is

known about the disability; and, (2) how society views

the vulnerable and weak (Adams, 1971)

The period from 1850 to 1870 was a time of great

compassion and optimism in America. A time of

humanitarian thinking society came to have a deep concern

for the welfare of the vulnerable and socially

disadvantaged. In the field of mental retardation a flow

of information developed between professionals in Europe

and the United States. The spirit of optimism favored

the development of numerous social institutions and

services including schools for the deaf, blind, and

people with mental retardation.

The founders of the American training schools, and

others concerned with the education of people with mental

retardation, were influenced by the educational

techniques developed by Seguin in France. The goal of

Seguins" moral education' was the development of a

loving relationship between teacher and pupil. It was

believed that educational training would lead to economic

38

independence and a return to the community for people

with mental retardation. This 'humanitarian' period was

followed by the era of 'paternalism'

Between 1875 and 1900 changing social conditions

resulted in a more paternalistic attitude toward people

with mental retardation. As the industrial revolution

swept over the United States, people became displaced and

many children became orphans. Many other children had no

home and as a consequence were admitted to institutions.

People with mental retardation who had been trained and

sent to live in the community found society so chaotic

that they were unable to successfully reintegrate into

community life. Large numbers of women who were mentally

deficient and living in county poorhouses were q'xv'xnq

birth to ever increasing numbers of babies who were also

mentally deficient. The larger society felt the need to

protect these children and adults which contributed to

the idea of long term custodial care. The goal was to

protect the socially vulnerable from the difficulties of

cornrnunity life.

Society did not view the institutionalization of

people with mental retardation as an infringement on

individual freedom rather they saw it as the humanitarian

way to handle what they saw as an every increasing

problem. As a preventative measure clinics were

established at some of the training schools where

39

information concerning medical and social issues was

provided to families.

The advancement of scientific knowledge, much of

which became widely misinterpreted, played a pivotal role

in how people with mental retardation were treated

following the humanitarian and paternalistic periods of

the past. Within the next twenty-five years attitudes

toward people with mental retardation changed from one of

paternalism to one of fear rg3vimg rise to increased

negative feelings and the devaluation of them as human

beings. Although there were a number of factors which,

in combination, lead to this fear (i. e. Social

Darwinism, psychometry) two was especially relevant to

the changes experienced in institutional care. First,

the myth that people with mental retardation had a

insatiable sex drive led to the absolute and total

separation of sexes within the institution; and, second

the beginning of sociological research specifically with

families of people with mental retardation where it was

believed that an association between low mentality and

other social pathologies (alcoholism, delinquency, and

pauperism) would be found. This 'genetic' link to low

intelligence became one factor that gave rise to the

'eugenics' period where sterilization of

institutionalized people was actively promoted by

professionals in the field.

40

Sociopolitical forces in the 30's and 40's

absorbed American thinking. During the Great Depression

and the Second World War public attention was focused on

survival and winning the war not on the problems of

mental retardation.

Continued research however indicated two other

relevant factors why social attitudes changed. First,

intelligence tests such as the Binet were found not to be

as definitive as once thought since a persons experience

also plays a role in how they ultimately function in the

cornrnunity. Secondly, it was found that low intelligence

had little to do with delinquency, alcoholism, or

pauperism@

By 1950, social theory and sociological practice

gave professionals the necessary tools for evaluating the

various elements that impact, both negatively and

positively, on the lives of people with mental

retardation. Societal thinking also changed from looking

at the individual components of mental retardation to

what were the factors in the environment that breed,

fostered, and perpetuated the condition.

Parents and many professionals who worked within the

mental retardation field began to actively advocate for

the rights of the individual. Together they worked to

change societys' perception of the helpless child to the

child as a human being, who although impaired, should

41

have the same rights as a non-impaired child. Research

on prevention and amelioration of mental retardation

became the focus of advocacy groups. New information on

all areas of mental retardation from cause to prevention

was coming from both the United States and Europe through

the exchanged of research results.

Increased public awareness of the intolerable

conditions of many large institutions began in the 1960's

with national coverage of how the people who lived in the

institutions were forced to live. This was one of

several factors that brought legislative action and put

mental retardation into a national context. It was no

longer the case that mental retardation had to depend on

the philanthropy of others because it became part of the

general welfare programs.

With the establishment of cormnunity based homes

people with mental retardation are now given the

opportunity to live as normal a life as possible given

their disability. Two factors threaten the continuation

of community placement. First, there is the lack of

funding. General welfare dollars continue to be cut

leaving individual states and counties to come up with

the additional dollars. This creates a wide disparity

among the states because some states are more willing to

put tax dollars into helping establish cornrnunity based

services. Secondly, there is still a hesitancy on the

42

part of many people in the community of having people

with mental retardation living on 'their block'

Although it has been found that once a home has been

established and people are living in it, community

resistance is lowered, continued media attention must be

given to help foster the idea that people with mental

retardation can be good neighbors.

CHAPTER II I,

Literature Review

The movement of persons with mental retardation from

institutions to cornrnunity based housing is known as

deinstitutionalization and is related to the principle of

normalization (Latib, Conroy, & Hess, 1984)

Wolfensberger (1972) defined normalization as the:

"utilization of means which are as culturally

normative as possible in order to establish and/or

maintain behaviors and characteristics which are

as culturally normative as possible" (p.28).

Implementation of this philosophy of normalization

requires not only the deinstitutionalization of persons

with mental retardation but movement to the least

restrictive alternative coupled with developmental

programming which emphasizes growth and learning rather

than custodial care (Latib, et al., 1984) The trend

43

toward creating alternative living received impetus from

a number of court cases (e. g. Pennhurst decision; Welsch

v. Levine), legislative action (P. L. 94-142), advocacy,

and research studies (Spreat, et al., 1987) Despite

strong support from professionals for the concept of

deinstitutionalization parents have at times been

resistant to such change.

Ferguson (1978) suggests that the desires and

concerns of individual family members have not been

effectively addressed by planners and policy makers

(Ferguson, 1978) In a survey of 197 superintendents of

public facilities an overwhelming majority (153) believed

that families had not been given sufficient opportunity

to express their feelings about deinstitutionalization

(Colornbatto, Isett, Roszkowski, Spreat, D'Onofrio, &

Alderfer, 1982) Early research to determine the

attitudes of specific groups of individuals toward

normalization was directed toward professional people,

such as doctors and lawyers, not those that would be most

effected by such a move, namely, the persons family

(Latib, et al., 1984) Early research studies done on

family attitudes toward deinstitutionalization firmly

established that most families of people living in

institutions were opposed to community placement (Klaber,

1969; Brockrneier, 1975; Payne, 1976; Frohboese & Sales,

1980; Keating, Conroy, & Walker, 1980)

44

Pre-Placement Studies:

Klaber (1969) found that an overwhelming number of

parents who had relatives in Connecticut institutions

were convinced that the facilities were qivi'mg excellent

care. In studies conducted by Brockmeier (1975) similar

levels of satisfaction coupled with a distrust for

cormnunity-based care were found in Nebraska. When

discussing normalization activities for children parents

were more positive when those activities focused on the

more generic 'mentally retarded child' [sic] than they

were for "my mentally retarded child" [sic] Ferrara

(lg7g)

Payne (1976) identified a "deinstitutionalization

backlash", a loosely knit countermovement comprised of

various local and statewide associations of parents

organized to support institutions and oppose cormnunity

group homes. Although many parents see small group homes

as a viable way of meeting the need for residential care,

many parents of persons with mental retardation appear to

prefer the institution (Atthowe & Vitello, 1982;

Frohboese & Sales, 1980; Payne, 1976) Meyer (1980)

found that 83% of the parents of currently

institutionalized people with mental retardation in

Western Pennsylvania believed that the large institution

was the best place for their children.

45

In a national survey of families of people currently

living in public facilities Spreat, et al., (1987) found

that there was a high level of satisfaction with the

institutional setting. The majority of families (61%)

rejected the idea of "a group home of about six beds,

located in a regular residential area, staffed 24 hours

so that clients are never left alone, and from which

every client goes to a day program (school, workshop,

job ) " ( Spreat, et al, 1987, p. 270 ) The severity of the

impairment will also contribute to a much stronger

opposition toward community placement (Cohen, 1988)

In the Baseline Study conducted as part of the

Pennhurst Longitudinal Study it was found that 83% of

families were 'satisfied' or 'very satisfied' with

Pennhurst with 72% strongly opposed to community

placement (Keating, Conroy, and Walker (1980) This

finding is similar to that found by Larson and Lakin

(1991) in their analysis of 27 studies of parental

attitudes on deinstitutionalization. In that review it

was found that in 23 of the studies that used statistical

analyses "a high proportion (91%) of parents with

offspring currently living in institutions were satisfied

with institutional living for their offspring" (Larson &

Lakin, 1991, p. 25)

Latib, et al., (1984) suggests that parental

opposition to deinstitutionalization focuses on five

46

interrelated areas: (A) ideology underlying community

placement; (B) the decision to deinstitutionalize as a

reversal of the decision to institutionalize; (C) the

adequacy of the cormnunity-based service system; (D) the

process used to deinstitutionalize; and (E) permanence of

the Community Setting.

A. Ideology underlying community placement:

Parental opposition to community placement centers

around the beliefs they hold regarding mental retardation

and how what they think about their mentally retarded

relative (National Association for Retarded Citizens

(NARC), 1977) "Many families believe that there are

individuals with mental retardation who will never be

able to achieve a level of independence they think

necessary for cornrnunity living" (Conroy, 1984, p. 64)

Atthowe and Vitello (1982) found that 66% of families

believed their relatives had reached their educational

peak. Similar findings were found in the pre-relocation

study of 119 families of Pennhurst residents which found

that 60.1% believed that their relative had reached his

highest level of education (Keating et al., 1980) To

many families, promotion of community living by

professionals creates a false expectation that their

children will achieve such independence (NARC, 1977)

Frohboese & Sales, (1980) found that parents believe

47

that mental retardation is a permanent condition, that

their child is not normal, and that their child will be

'ever child-like' The historical context of these

beliefs began with the view that people with mental

retardation were "children of God" and as such are

"incapable of committing evil" (Wolfensberger, 1975, p.

15 ) The "innocent" are thought to be harmless and were

.indulged much like a child. (Wolfensberger, 1975,

p.l5) Physicians spoke of the incurability of mental

retardation and recommended placing the child in an

institution where he would be permanently cared for.

In 1905, Binet and Simon developed a technique that

would indicated who could and could not succeed in

standardized school work. Several Americans, notably Dr.

H. H. Goddard, Kuhlman and Terman refined and applied

this new instrument to American children. Dr. Goddard

"was able to reclassify deficient persons in terms of the

maximum mental age attained: the idiot [sicl not more

than a 2 year mentality, the imbecile [sic] between 2 and

4 years, and the moron [sicl 7 to 12 years" (cited in

President's Committee on Mental Retardation, 1977, p.

10 ) Stern and Terman in 1916 invented the intelligence

quotient or I. Q. Test. From this and the

reclassification came the belief that "no amount of

education, , would alter the constitutionally endowed

48

I. Q. (cited in President's Committee on Mental

Retardation, 1977, p.ll)

B. Reversal of decision to deinstitutionalize:

When families first make the decision to

institutionalize their relative they did so believing

that institutionalization would be permanent and final

(Conroy, 1984) Stedrnan (1977) suggested that

deinstitutionalization represents additional stress and

anxiety because the family questions whether the decision

to institutionalize was appropriate in the first place.

Deinstitutionalization represents a "painful

revisitation" of the original decision to those families

who chose institutionalization (Willer, et al., 1979)

C. Concerns about the Adequacy of Community-Based

Service System:

Concern about the availability and quality of

supervision coupled with the belief that their child

requires 24-hour medical care are consistently reported

as major factors in parental resistance to

deinstitutionalization (Atthowe & Vitello, 1982:

Frohboese & Sales, 1980; Meyer, 1980) Payne (1976)

found that parents were in favor of maintaining

institutions and were against establishing small group

homes. Parents strongly agreed that institutions were

preferred because of the quality and availability of the

medical staff, because the mentally retarded would be

49

with people like themselves, and because institutional

life protected them from the stress associated with

community living (Payne, 1976) In addition, parents

believed that the institution would always provide for

their relative even after the they had died (Payne,

1976)

Spreat, et al., (1987), found that an overwhelming

majority (88%) of the respondents to their survey agreed

that the institution where their relative with mental

retardation lived was providing the kinds of services and

care that their relative needed. Families expressed

concerns about the inadequacy of community services such

as recreation, transportation and dental care (Grimes &

Vitello, 1990)

D. The deinstitutionalization process:

Prior to the 1930's parents had assumed a passive

role leaving important decisions regarding the design and

availability of services to the lawyers, doctors and

other professionals. Parents, as a group, began

advocating for what they perceived as inadequate services

and worked toward changing the publics perception of the

mentally retarded. In 1951, the National Association of

Parents and Friends of Mentally Retarded Citizens, now

called National Association for Retarded Citizens (NARC),

was formed by a group of involved parents. Despite their

effort the decision making power continued to rest with

50

the 'experts' effectively depriving parents of their

"natural rights" to determine where their offsprings

should reside and what services they should receive

(Atthowe & Vitello, 1982; Frohboese & Sales, 1980).

E. Permanence and funding:

Families are very concerned about the permanence of

the cornrnunity settings (Frohboese & Sales, 1980) In

Texas is was found that families strongly opposed the

rapid growth of small group homes preferring that funding

be used to improve state schools (Payne, 1976) Families

were greatly concerned about the security and permanence

of community funding and felt that they could "not depend

on the community service system to provide services for

their relative" (Conroy, 1984, p. 167) Funding for

cornrnunity based services has come primarily from each

individual state causing wide discrepancies in the

provision of services among the various states and

regions of the country.

Notwithstanding the large array of research that

indicated strong opposition to community placement there

are equal numbers of post-placement studies that counter

that position. These studies have become a valuable tool

for assessing the quality of services and for obtaining

input for the policy making process (Conroy & Bradley,

1985; Covert, Hess, & Conroy, 1985; Conroy & Feinstein,

1985)

51

Post-Placement Studies:

Latib, Conroy, and Hess (1984) surveyed the same

families post-placement as part of the Pennhurst

Longitudinal study. They found that a dramatic shift

from opposition to support of community placement had

taken place. Families still believed that their relative

had serious medical needs but also felt that their

relative was much happier since moving. Families

continued to have negative perceptions regarding their

relative's developmental potential, the funding of

community programs, and the amount of staff turnover

(Conroy & Latib, 1982) Rudie and Riedle (1984) reported

that of 74 families surveyed 89% were satisfied with

community placement but were resistant to any future

relocations. These results "taken with the results of

two previous studies, suggests that parents prefer that

their child remain in his or her current placement,

whether in the community or state hospital" (Rudie et

al., 1984, p 295)

Heller, Bond, and Braddock (1988) conducted a one

year follow up study on family reactions to closure of an

Illinois institution and the relocation of the residents

into smaller facilities. In a pre-post survey

respondents were significantly more positive about their

relative's placement in the community facility after

movement had occurred and were satisfied with the quality

52

of care their relative was now receiving (Heller et al.,

1988) AS in the study conducted by Rudie and Riedle

(1984) these families were also opposed to any future

transfers.

Covert, Hess, and Conroy (1985) surveyed families

after their relatives had left the Laconia State School.

Retrospectively only 38% of the families indicated that

they had been 'satisfied' or 'very satisfied' with

Laconia, while 84% were satisfied with their relatives

current community placement (Covert, et al., 1985)

In a study of families of current residents of

Connecticuts' institutions Conroy et al., (1985) found

significantly less opposition (50%) to the idea of

community placement than was found in other studies.

This same study found that 82% of families with

institutionalized relatives were 'satisfied' to 'very

satisfied' with the care they currently were receiving.

Follow-up research of these same Connecticut families

indicated that for those people who had moved to

community settings family satisfaction and the family's

perceived happiness of their relative had significantly

improved (Conroy, et al., 1985) Reflective of other

studies, it was found that family members were most

concerned about staff turnover, security of funding, and

having a voice in any further changes in their relatives

53

lives (Conroy, et al., 1985; Rudie et al., 1984; Heller,

et al., 1988)

Grimes and Vitello (1990) examined the attitudes of

32 families of deinstitutionalized people who had lived

in the cornrnunity for 3 to 7 years. Preplacement data on

these families indicated strong opposition to community

placement (Atthowe & Vitello, 1982) The post-placement

data found families significantly more positive in their

attitudes toward deinstitutionalization but voiced

continued concerns about the high staff turnover,

inadequate services, and the possibility of future

relocations (Grimes, et al., 1990)

Minnesota and community placement:

In Minnesota, the number of persons with mental

retardation living in state institutions was 67008 in

1950. As a result of the Welsch v. Levine consent decree

that number has steadily dropped to a level of 1,050 in

1992 (Fact Book: State Operated Residential Programs,

1993) Welsch v. Levine was a class action suit brought

against the Minnesota Department of Human Services for

improvement of services for persons with mental

retardation. Filed in 1972 its goal was the improvement

of services to those people with mental retardation who

were then living in regional treatment centers.

Minnesota's use of public institutions to provide

services to persons with mental retardation has

54

paralleled the national trend. From its peak in 1950 it

is expected that Minnesota will discharge the last

remaining individuals by the year 2000 (Report on the

Changing Role of Regional Treatment Centers for Persons

with Developmental Disabilities, 1989)

In Minnesota a survey of 110 families was conducted

to determine parental attitudes toward placement of

persons with mental retardation from regional treatment

centers into community programs. In that study sixty-one

percent of families indicated that they were 'somewhat

satisfied' or 'very satisfied' with the regional

treatment center services before the transfer had taken

place, while 88% were somewhat or very satisfied with the

community program once the transfer had occurred (Cohen,

1988 )

CHAPTER IV.

Summary, Conclusions and Recommendations

Deinstitutionalization as a United States public

policy began some 25 years ago. Since then there have

been numerous studies that have addressed how parents

feel about deinstitutionalization. There have been three

general types of research conducted. One type surveyed

55

parents whose people who were currently residing in a

public institution. A second type of study surveyed

families whose relative had been in a public institution

and was now living in community based facilities. In the

third type of study parents were surveyed when the person

was still in an institution and again after placement in

the community. The purpose of this paper is twofold:

First, to put the policy of deinstitutionalization into

an historical perspective; and, secondly, to analyze

whether the survey instrument used, did in fact, measure

parental attitudes and if so can the findings be

generalized to the larger population.

The first type of study, those conducted with

parents whose children were currently residing in

institutions indicated overwhelming satisfaction with the

institution and the services their son/daughter were

receiving (Marsh, 1984; Spartz, 1986; Meyer, 1980) At

the same time these parents opposed

deinstitutionalization. Can these 'attitudes' be

generalized to the larger population of parents whose

children are currently living in institutions? Rubin &

Babbie (1993) state that generalizability is "that

quality of a research finding that justifies the

inference that it represents something more than the

specific observations on which it was based" (p. 697)

56

Marsh (1984), surveyed parents from the North

Central region of North Carolina. Generalizing from the

results of this study must be done with caution.

Specifically, there are two reasons for this observation.

First, the survey contained 'yes/no' type questions that

did not allow for directional expression of

respondents' feeling and attitudes (see Appendix A)

Speculation as to causality is therefore greatly limited"

(Marsh, 1984, p. 42) Second, the population of North

Carolina tend toward conservatism so that "family

attitudes" may be related to this conservatism and would

affect the ability to generalize to states that are more

liberal in orientation. The respondents were, for the

most part, females which does not give an accurate

picture of 'family' attitudes. The fact that women are

the primary caregivers could bias responses given. By

answering 'no' to the question of 'whether they were

satisfied with the institution' her life would

dramatically change if her child were to be removed from

the institution. Another important fact is that

institutions in North Carolina, at the time of this

study, were not under court order to close which often

forces pro-institution parents to take sides and which

could affect their response to such a survey (Conroy et

al., 1985) This survey was anonymous which, while

57

allowing the respondents to be more open with their

responses, eliminated the possibility of any follow-up.

Spartz (1986), conducted a survey of Minnesota

families whose relative was currently living in two of

Minnesotas' Regional Treatment Centers. The length of

the survey, more than 50 questions, may have had a

negative effect on respondent who may not have been as

willing to spend the additional time needed for the open

ended questions (see Appendix B) Mothers again were the

primary respondents. External validity, "the extent to

which we can generalize the finding of a study to a

setting and population beyond the study conditions"

(Rubin et al, 1993, p. 264), would have been stronger if

every family who had a child in Minnesotas' institutions

had been surveyed. This survey represents only one point

in time "unknown factors, given their inclusion or

absence at another time, could produce different

responses" (Spartz, 1986, p. 42)

Meyer (1980) surveyed parents of persons with mental

retardation who had been institutionalized through the

use of a mailed questionnaire to determine the placement

they preferred for their child. The responses were

anonymous in order to encourage 'frankness', even though

this eliminated the possibility of follow-up contact to

increase the rate of return (Meyer, 1980) Meyer (1980)

states: "Without anonymity, however, parents may have

58

hesitated to voftce dis,'=iatisfaction toward the

institution. Or they may have feared that a favorable

response to community living might hasten their own

child's placement" (p. 187) As with the aforementioned

surveys the data were collected at only one institution

thus restricting external validity. The response rate,

approximately 50%, will effect the generalizability of

the results.

These studies must be viewed with caution because of

the methodological limitations that have been cited. The

reliability and validity of the survey instruments have

been called into question (Larson et al, 1991) Marsh

(1984) and Meyer (1980) used unpublished instruments with

untested reliability. Spartz (1986), modified the survey

developed at Temple University by Dr. James Conroy. The

results may also have been influenced by response bias.

Attitudinal variables, such as parental satisfaction, are

susceptible to such differences as the the way the survey

was administered, who administers the survey, and to the

"characteristics and roles of the respondents" (Larson et

al., 1991, p. 33)

The majority of the studies of post

deinstitutionalization attitudes used retrospective data

(Bradley et al., 1986; Rudie et al., 1984) The

reliability of parents q"xvinq accurate opinions about how

they may or may not have felt about institutional care or

59

community placement after the fact may be seen with some

skepticism.

Conroy (1985) suggest that the changes seen in

parental attitudes after deinstitutionalization can be

explained by dissonance theory. The decision to place a

child into an institution could create a state of high

post 'decisional dissonance' This dissonance is reduced

over time as parents come to adopt a position that the

institution is what the relative needs. Placement into a

community setting provides strong evidence that the

institution was less appropriate that the parents once

believed. "This then results in a change in attitudes

about both the institution, and about the appropriateness

of the community setting" (Larson et al., 1991, p. 36).

Those studies that surveyed parents twice: first,

while their son or daughter was still institutionalized

and later after he/she had moved to a home in the

community provide a more accurate measurement of parental

attitudes (Conroy et al, 1985; Grimes et al., 1990;

Conroy et al., 1991)

A combination of quantitative and qualitative

questions were used to produce an accurate picture of how

parental attitudes change over time. Conroy et al.,

(1985) (see Appendix C) measured attitudes six months

after placement in the community whereas, Grimes et al.,

60

(1990) surveyed families three to seven years post

placement.

Several threats to internal validity will effect

these studies. First, people continually grow and change

and those changes effect the results of research (Rubin

et al., 1993) The mere passage of time may 'mellow'

parental opposition to community placement. Secondly, it

is possible that the parent who filled out the original

survey may have died leaving the other parent to filled

out the post survey.

Conclusions

What have I learned about people with mental

retardation and how does it apply in social work policy

and practice?

First, discrimination against people with

disabilities continues and is evident when communities

react negatively to the creation of community based

living arrangements. Ethical social work practice

requires that we become advocates for people who are the

recipients of discrimination. Social workers should not

only advocate on behalf of their clients and their

families but should take the opportunity to educate the

cormnunity on the causes and effects of mental

retardation.

61

The history of mental retardation in the United

States illustrates the importance of the principles of

cooperation and collaboration. Without the active

involvement of a diverse set of peoples (i. e. parents,

legislators, judges, and other professionals) the future

for people with mental retardation would not be as

promising. A multidisciplinary approach is important

because of the many complexities of mental retardation.

Social Workers can assist in providing a collaborative

approach whereby the needs of the client are reframed for

professionals with other professional orientations.

Economically, funds needed to provide cormnunity

based service continues to be problematic. At a time of

fiscal restraint social workers have a unique perspective

from which to address the issue by utilizing a systems

approach to services. The profession of social work must

provide leadership, actively lobbying both at the state

and national level, for the continuation of sufficient

funding.

In the area of assessing parental attitudes toward

deinstitutionalization it is important to know and

understand the reasons why some parents do not want their

child to be placed in the community. Research has shown

that greater sensitivity to parental feelings is an

important factor and contributes to successful community

placement.

62

Recormnendations :

In constructing a questionnaire that will give an

accurate assessment of parental attitudes several items

must be considered. First, the questionnaire should be

anonymous, despite the inability to have follow-up

contact, because it permits the respondent to be more

open with their responses without fear of negative

reprisals. Secondly, it should include several

qualitative questions. This form of question affords the

respondent the opportunity to put in writing their

personal feelings that are not as easily measured with

quantitative questions. Lastly, the form should be

short. In addition to questions that ascertain the

demographics of the respondents the questionnaire should

consist of no more than ten Likert style questions. The

reason for the shortness of the form is that you want the

respondents to take additonal time in which to

thoughtfully answer the qualitative portion of the

questionnaire.

63

CHAPTER V.

'['rends

"The challenges ahead require continued

change from centralization to

decentralization-from an emphasis on

agency to individual, from professional

programs to paraprofessional and family

supports, from limited, inefficient

options to truly individualized,

efficient, and productive approaches. "

(Lakin, et al., 1992, p. 238.

It is clear that there is a national cort'unitment to

provide community living opportunities for people with

mental retardation. The role of the family in this

process is expected to continue and even expand as we

enter the 21st Century. The involvement of the family

can be a powerful resource for social support, guidance,

and advocacy. It is crucial to the success of cormnunity

transition that families become and stay involved in

program planning for their relative. Parents must

continue to be informed of all options Eor their

children, for it is through knowledge that they become

empowered.

The movement of people with mental retardation into

the mainstream of cornrnunity life is just beginning.

Integration into regular education programs, inclusion

into cornrnunity residential, vocational, and leisure

environments will succeed only if families and the

consumers are involved in the decision making from the

64

beginning. Deinstitutionalization will encompass a

continuum from the institution to community program, to

semi-independent or individual placement.

Parental concerns about the availability and quality

of residential staff will continue to be addressed by

administrators, legislators, and policy makers. This

area will remain a major challenge in the years to come

as more people are placed into cornrnunity settings.

Greater emphasis needs to be placed on recruiting,

training, and retaining direct service staff. The state

and county who are responsible for maintaining cornrnunity

residential facilities will need to address the high

turnover rate currently being experienced.

Professionals working in the mental retardation

field and policy makers will continue to conduct ongoing

periodic family surveys that will evaluate parental

attitudes and contribute valuable information that will

help formulate policy. As more institutions begin to

close input from the broadest possible cross section of

families is needed.

For those families who choose to keep their child at

home the development and implementation of options such

as family-focused case management, respite care and

easier access to medical clinics will provide them with

peace of mind. Policy makers, administrators, and

advocacy groups must find a way to implement programs

65

that will help parents in developing a positive, less

stressful attitude toward deinstituti.onalization and

community living

66

TABLE OF APPENDICES

Appendix A

Appendix B

Appendix C

Marsh Survey

Spartz Survey

Pennhurst Survey

Pre/Post

67

70

76

AP F END :X -l

SUR!"EY INSTRUXENT67

Please DO NOT put your name on thisi paper.

ansver or fill in the blank.

Circle the number of the right

Z am the resident's

Z live in

Hy racial background is:

County.

Black

Htspanic

VMte

Other

(father, mother, sister,

etc. )

The highest Bride of school Z coraplete5 vas:

NO schoollng

Elementary School (grades 1-8)

Some high srchool (grades 9-11)

High School

Mat is the resident's age? years.

!that is the resident's sex? 1. hie

Some college (1-3 years)

College degree

Graduate school

2. Feraale

!ihat (10 you think is the resident's Level of mental retardation?

Nild

Hoderate

Severs

Profound

Hov often did you visit the resident in the past year? times.

Hov lonz has the resident 'een at Hurdoch or other Center?Total years.

,'10. Do you !cnov the name of the resident's soclal vorker?

1. Yes 2. No 3. Not sure

APPENDIX A 68

In the community several living sltuations are often available for thementally retarde! These include

Group Homes Up to six resldents vith staff on duty vhile clientsare in the home Clients usually attend a vorkshop

Specialize! Group Homes Similar to group homes, but vith more staffconsultants and other services (as an ZCF horae)

Supervise! Apartments Staff are available at key times and live nearby

so they are available if needel

Foster Care Room board and some

adults in a home for one or tvo pers

supervision are provided by trained

ons

Independent Llving The person receives support services (coungelir4,help vith money ate ) but is not supervlsed

11 If all of these programs vere nov avallable mere do you think the

resident vould best be served nov? (Circle one answr)

1 Group Home

2 Specializetl Group Home

3 Supervised Apartment

4

5

6

Foster Cars

Indepenlent Living

!'tur!och Center

12 If the resident reaches his or her highest potential vhera do you

think he or she vouM best be served? (Circle one ansver)

1 Group Home

2 Specialized Group Home

3 Supervise! Apartment

4 Foster Care

5 Independent Living

6 &irt!och Center

Please zlve reasons for your ansvers to 11 and 12

APPENDIX A 69

13. Are you satisfied vith the care provided at !rdoch Center?

1. Yes 2. No

14. From your oy experiences, information from friends, nevspaper articles,

etc., do you feel that mental taetar4ation services in your community are

adequate?

1. Yes 2. No 3. Don't !mov about services

15. List tvo thlnzs about the resident that you thlnk vould help him or herto move to the comainlty.

1.

2.

16. List tvo thinzs about the resldent that voul4 have to change or improvefor him or her to move to the community,

1.

2.

17. Do you feel that the resitlent has reache4 his or her highest level of

grovth and development and vill not progress much beyond the level he

or she is at nov?

1. Yes 2. No 3. Not sure

18. Do you think the resident might ever return to your home?

1. Yes 2. No

19. !iould you be villing to talk vith staff about Lhe resident'a potent.tal

to live ln the cotmmin!lly?

1. Yes 2. No

Thank you for your help in fllllng out t.hese forms!

FWLY SURVFY

APPENDIX B QUESTIONNAIRE 70FMILY SURVEY

The 4zstjons that rollov are constructed to allov your ansvers by elther a checkmark in a space or a circle around the anwer that best descrlbes your feelings. Ina rev instances, your vritten anwer is requested. The questlormlre vlll not takelong to rxaplete. Please try to arisver every question,

5xm>ti 1: save you ever been intervieved ln a sirveyp

EXANPLE 2: It iS Verb/ hard tO fill out thiS StjfflyStrongly Sxevhat Swevhat Strmgly

DlMlree Dlsa2gree AgrJee A@ree4MRTI.

He bd like to ask you sane qtastlws about your relative.

(,, 1. t is your relationship to your relative jn thls facllity?

Q'HLsTii rpzease chech one)mther (1)Father (2)

Other (please speclfy)

70 4.astsm

What is your relative's age (in years)?

t is your relative's sex

Fetnale (2

Ag=

Does your relative have brothers or sisters sho are mentally retardm?

(Please check onB )Yes ( I )

'm (2)

Hbv old gas your relative vhen (s)he t4JST RECENTLY entered HiIlmar RegionalTreabwit Center (WRTC)?

years old

) 3 /J/ 6PIS'

?bv old vas your relative then (s)he FIRST ENTERED Willmar Regional TreatmentCenter OVRTC)?

, 7elarS Old

7. %n hov many non-state operated facilitles has your relatjve lived?

non-state racil4tles

//7 ,/ / 8 =QS gfic

II,p 9.-(5o7NaZ

?bv hx>g (In years) has your relatlve been served by WRTC?

years

Hov Iang (in years) has your relative been served by any other fflnnesota stateoperated facility?

years

APPENDIX B 71

Hov stzy times during the calergJar year 19B5 did )'C+LI have mntact vjth WRTCstarr by telephwe?

eriter approximate nurrber

Do you feel XTC has provlded the kind or service and care your relative needs?

(Please check one )yes (1)Ae (2)

Ir no, please say vhy

31 20. In gereral, hovi satlsfjed are you vith the services y>ur relative !s currentlyrecelvin@ at VfilTC?

5s"=s9'ttPlease check one )

N=ry Satisfled (1)Sanwhat Satisrled (2)Sanwhat Dissatisfled (JJOry Dlssatisrled (4)

ad 21. Have you =ver felt your relative has been abtsed at WRTC?

(Please check oneYes (1

(N[JTE: The questlr:in of possible abuse ls a matter or impwtance to the admin-IstratJnn or MTC. Ir you checked 121 Yes, vould you pleda send a personalletter to the Chler Executive Orrlcer or WRTC, vith vhatem details you haveregarding any possf51e abuse to your relative. )

22. Ir you leave any claints about the service your relatlve js receiving, vhatare your tvo mln claints?

2J. Ir you could change one thin@ to lm4:irove services to your relative, or to your-selr, vhat vould you change and hay?

About hov long bg:iuld It take (!n hours) to go rrm your has to VTC?

About tcurs.

M 25.

PwfflR-

What Is the mrltal status of the natural parents of your relative?

(Please check one)Harried (living vith spouse) (1)Separated or divorced (2)Hidoved (J)Never marriedEbth deceased

APPENDIX B 72

5, z hay learned about Group Hs and other alternatlves to large Faclllties

(Pleze check ALI that apply

bg , ,, Naetings at willmar Regional Treatment Ca'nter (2)

CBL s > Saneone I Knovi viho haS a relatlve in a Group HCmat (4)

B>g,p-g7 <, Groups that prte the Interests of mentally retarded persons (6)

Other (18) Please Specify

mv h coritro! do you think you bmuld have in declslons about transfer of yourrelative Into a Grou(:i H?

(Plegse check

None

Little

kne

A Lot

Canplete

APPENDIX B

8. W WELL HAS T?E WIILNR RECdO?4AL TREAT?4ENT CENTER (V/RTC ) m/ € m PROVZDING

THESE 77a,S FOR YDLJR RELATIVE?

;2,1 a.ShdLst

:2& "-

:r,mm'ff

:LS C-

'3,sxsKS

2't d.

h

i

5ocshsL

5

9B4iLeti

pp,a q,'

f'fldUm

(Please circle O?[ hUNBER F(:JR EACH SdATEMENT)

A speciric program plan to

address x:ry relatlve'sspeclal needs.

Irqplewantatlon I t's

speciric plan by all starr

vho bmrk vlth my relative.

Stccess Irt achleving

hislher goals ror learnlngand development.

Recreatiw (trips, sports,arts, & crafts).

tearninglimproving selr-

care (growing, hyglene,dressing. eatlng).

Keeping tdmlher activeBnd busy-

Self respect.

sedical services (surgery,

physical therapy, dental,nursjrq).

Learnirq to cmnunicatebetter.

A secure & permnent hma.

Learninglimprovingsocjal skills.

Decent clothirrg.

Getting rid or problmbehavlors.

Physlcal cmfort.

Learninglimproving basic

reading, vrltlng, and tseof ntmxsrs.

Protectim frrxn ham.

Preparation and tralningfor bmrk.

Very

&adl7

Very

Badly klell kll

2J4

rbes hbt

Oply

rbn'tKtXw

APPE%'DIX B 74

PART m.

he mdd 11ke to knr:m about your ramlly's feelings atrout placement decislonsvith your relatlve.

(g> 1. Just artar your relative vent into Km, hov did ramily 11re diangep

lsah (Pleasa check we) Changed for the Worse (1 ) N) Change (2) Changed f'or thsi Better (J)

[kin't Knob (9)

'7 2. mv db you think randly lire v:iuld change ir your relative wre to be placed in

(A;rf%m ' " "?(Pleasa check sie )

Change ror the mrse (1 ) N5 Change (2)

Change for the Better (JJ

J. soH mortant vere the fOllmlng in the deciSian tO place pour relatlve at WTC?

(Please circle one ntnber for each)

fass>d

mMPehA ,3@,p-g&x>

Wg-

F>e%m11,, i

fVfifl)V<A

BpW

r:dfficulty or physical

Advice of doctor, clergy,ar other professlonal

sney prThlms

ulness J Th Famlly

letts in Marriage

Dirricult for otherddldreri ln the famly

Hurt relationshlps vithrelatives or friends

F'ressure rrx relativesar frlends

Naaj ror ttwjlcal care

Need ror nw-medicalservices (l.s., school,vork, speech, toileting)

Naed to be with peoplelike himlherselr

r ror a m:ireprotected place

Nit Sanevhat *ry

Dqportarit Oortant hqrtant Important

1 2 J 4

j

1

1

1

1

I

1

1

1

2

2

2

2

2

2

2

2

2

J

J

J

J

y

y

J

J

y

4

4

4

A

4

4

4

4

4

APPENDIX B 75

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Thank you ror investing your time in filling out this irrportant questionnaire.

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flAlll vtnu NfitlTllLV VtAllLV NOASlliTANCE

@, rrleiidi? 1996! 3!1! !nx 9'n S.'6!

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0 &aer*atlsvi Jtrlpi, mbblaii IQrtli arts, grafts)

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ilaa5 ratlrt plans, ate ffii Iti

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the coaaunlty,

I 2 ) k s

O'o h'ab;iml'@t"hai"t: :':iux"'a"flnanclal burdmi for tbacars of our r*lallw 41xa€ha/she) has leftPannhurst.

i s ).I' I I 4 s

(uao autuanvn)

O:o,-,:gz:l:@:l:al: "t-i*antally retarded pars

are Ilvan noixl o@iHrtmil-tl*s For 11VIN, virkli@,am ichml. Iii thlsklqat mat yair ralatlv*

vlll mad In the futureshsx such 4o you alrzvlth lhlsl l

I- I .) 4 s

(")vha Laait Railrle$lv* l" Alt*rnatlv* says Mat

2tardad @+arwiishould ha allomd to Ilva

In places ffllch ara as

auch 11ka mraal basss as

OiilN*. In thlmilqabout mat yair r*lulwvlll nod In the fut*ira,

hov such & yes a@ragvlth €hls?

iI

I

I 2 ) 4 '5

()(i*lnuliutlmal2aatlm" Is the fflOVIN tJ xiitally

retarded parsons fteaa theImtltutlm liit* plx*iIn the cealty. Isthlnklng at at rralatlva vlll wd In the

future, hov such h you

qr*a vlth thli?

z I :j 4 s

0

REFERENCES

86

87

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