Amicus Curiae Brief — Olmstead v. LC

No. 98-536

In the

Supreme Court of the United States

OCTOBER TERM, 1998

TOMMY OLMSTEAD, COMMISSIONER OF THE

DEPARTMENT OF HUMAN RESOURCES OF THE

STATE OF GEORGIA , ET AL.,

Petitioners,

Vv.

L.C. AND E.W., EACH BY JONATHAN ZIMRING, AS

GUARDIAN AD LITEM

AND NEXT FRIEND,

Respondents.

ON WRIT OF CERTIORARI TO THE

UNITED STATES COURT OF APPEALS

FOR THE ELEVENTH CIRCUIT

AMICI CURIAE BRIEF OF

NATIONAL MENTAL HEALTH CONSUMERS’

SELF-HELP CLEARINGHOUSE, ET. AL.,

IN SUPPORT OF RESPONDENTS

LORALYN MCKINLEY

Counsel of Record

McKINLEY & VONIER

1333 Race Street

Philadelphia, PA 19107

(215) 569-1644

Counsel for Amici Curiae

TABLE OF CONTENTS

TABLE OF AUTHORITIES.

INTEREST OF AMICI CURIAE.

SUMMARY OF ARGUMENT ..

ARGUMENT.

|. Personal Accounts of the Benefits of Integrated

Services

A. Jane D

B. James Price ..

C. Michael J. Kennedy

D. Bernie S

E. Margaret Donahue

F. Charles Q

Community-Based Services Allow People with

Disabilities to Obtain the Maximum

Independence and Integration while Receiving

[reatment and Support ..

A. A Community-Based Mental Health System

Che Professional Literature Confirms that

Community-Based Mental Health Services Allow

for More Social interaction with Non-Disabled

People, Better Recovery, and Greater Happiness

and Fulfillment

CONCLUSION

TABLE OF AUTHORITIES

Page(s)

BOOKS AND TREATISES

Paul J. Carling, RETURN TO COMMUNITY: BUILDING

SUPPORT SYSTEMS FOR PEOPLE WITH PSYCHIATRIC

EER ARS 23

Center for Mental Health Services, Mental Health

ITIL inialicduietvics, shdnshntvenbencdsepincninncsesserenscnosonnes 20

K. Jamison, AN UNQUIET MIND (1995) .0000....cccccccccscceees 14

M. Winerip, 9 HIGHLAND ROAD (1994) 000... 13

ARTICLES

William A. Anthony, Recovery from Mental Illness:

The Guiding Vision of the Mental Health Service

System in the 1990s, 16 PSYCHOSOCIAL

REHABILITATION J., APRIL 1993, at D1... ee 23

Herbert Bengelsdorf, M.D. et al., The Cost

Effectiveness of Crisis Intervention: Admission

Diversion Savings Can Offset the High Cost of

Service, 181 J. NERVOUS & MENTAL DISEASE 757

SENSES RNS YS eae on 19

Richard D. Budson, M.D., Community Residential

and Partial Hospital Care: Low-Cost Alternative

Systems in the Spectrum of Care, 65 PSYCH.

| ER RE EL cea Ae oR 18

Paul J. Carling, Major Mental Illness, Housing, and

Supports, 45 AM. PSYCHOLOGIST 969 (Aug. 1990)....... 24

James Conroy et al., A Matched Comparison of the

Developmental Growth of Institutionalized and

Deinstitutionalized Mentally Retarded Clients, 86

AM. J. MENTAL DEFICIENCY 581 (1982) .........c.cccccc000 24

**

Michael J. Kennedy, Turning the Pages of Life in J.A.

Racino, et. al., HOUSING, SUPPORT, AND

COMMUNITY: CHOICES AND STRATEGIES FOR

ADULTS WITH DISABILITIES 206 (1993)... 1!

A. Kiesler, Mental Hospitals and Alternative Care:

Noninstitutionalization as potential Public Policy

for Mental Patients, 37 AM. PSYCHOLOGIST 349

John Lord & Alison Pedlar, Life in the Community:

Four Years After the Closure of an Institution, 29

MENTAL RETARDATION 213 (1991) .o..0..ccccccccccceeeeeeees 24

Aileen B. Rothbard & Eri Kuno, The Success of

Deinstitutionalization: Empirical Findings from

Case Studies on State Hospital Closures, J. INT'L

LAW & PSYCHIATRY, January 28, 1999, at 3-4............. 24

Aileen Rothbard, et al., Service Utilization and Cost

of Community Care for Discharged State Hospital

Patients: A Three-Year Follow Up Study,

American Journal of Psychiatry, December 9,

UTED Tit ineraeetetnnniicacnetantaniinediniulatsednetndechietdietenebsmariediadouintl 18

OTHER AUTHORITIES

A Service Development Plan for a Comprehensive

System of Public Mental Health Care in

Compliance with the Orders of the Court in Dixon

v. Sullivan and Dixon, July 1991 (Approved and

ordered on January 27, 1992, U.S.D.C. for the

District of Columbia, Civil Action 74-285 (AR)........... 20

Te-wei Hu & Jaclyn W. Hausman, Institute for

Mental Health Services Research Working Paper

No. 4-94, Cost-Effectiveness of Community-Based

Care for Individuals with Mental Health

FO IY GUO iachatinsdidadendinntinshnbedctinesstsasinaantiiiis 24

K. Charlie Lakin and Mary Hayden, Final Report to

the Health Care Financing Administration: An

Evaluation of Implementation of the Medicaid

Community Supported Living Arrangements

(CSLA) Program in Eight States (1996)........................ 20

Zana Marie Lutfiyya, Center on Human Policy,

Reflections on Relationships between People with

Disabilities and Typical People (Aug. 1988)................ 23

State of Alabama, Department of Mental Health and

Mental Retardation Five Year Plan FY 93-94 to

Beth Stroul, Crisis Residential Services in a

Community Support System: Report on the

NIMH Cnisis Residential Services Project (1987)......... 20

Telephone interview with Aimee S., mother of Bernie

SD. GUA BE, SIO D ccccenteicrciicmbiticabinssiilieanasaieiiniatiiinin 12, 13

Telephone interview with William A. Anthony, Ph.D.

GID. Bay Fe Rccimacieincnvatnniaiiaiiiasiimaiainasicianes 23, 24

Telephone interview with Jacqueline Beilharz,

Supervisor, Pennsylvania Protection and

Advocacy (February 11, 1999) ..00.........ccccccceceeeeees 16, 17

Telephone interview with Margaret Donahue (Feb.

BA, CO ce enciccsasstguiiatninnguitiailaspaniicamiaeaiaaiinameess 14, 15

Telephone interview with Diana Carra Haugh,

Advocacy Specialist, Pennsylvania Protection &

Advocacy (February 11, 1999) 000 7, 8, 15, 16

Telephone interview with James Price (Feb. 9, 1999)....... 8,9

Telephone interview with Michael Kennedy (Feb. 11,

FOP cnnssantsinanstssiiptaninsainssiiticaatiabinaibiniianliitiiedae 9, 10, 11

Barbara Wnght & Martha P. King, National

Conference of State Legislatures, Americans with

Developmental Disabilities: Policy Directions for

Se Re rh eee cetetbialctnandtdednlie wetitteecietiaa st: 23

iV

Barbara Wright, What Legislators Need to Know

About Mental Retardation and Developmental

Disabilities, National Conference of State

Legislatures (Feb. 1990)

eee ee)

INTEREST OF AMICI CURIAE’

The National Mental Health Consumers’ Self-Help

Clearinghouse is a national technical assistance center estab-

lished in 1986. It is run by and for people who are consumers

of mental health services and survivors of psychiatric illness

(known as consumers/survivors). Its mission is to promote

consumer/survivor participation in planning, providing and

evaluating mental health and community support services, to

provide technical assistance and information to consum-

ers/survivors interested in developing self-help services, and

advocating to make traditional services more con-

sumer/survivor-oriented. As with all of the other amici, the

Clearinghouse has an interest in helping people with mental

illness live to their full potential as active members of the

community.

The Alaska Mental Health Consumer Web is a resource

for mental health consumers. All of its efforts are aimed at

promoting recovery. Among its many activities, the group

organizes consumer support groups, has been effective in

changing mental health policy, and fights the stigma of men-

tal illness through information and education.

C.H.O.LC.E.S. in Georgia (Consumers Helping Our-

selves with Information, Communication, Empowerment and

Support) is an advocacy organization of consumers/survivors

dedicated to ensuring consumer choice. Its current initiatives

include working to promote (1) the establishment of exten-

sive and varied community resources and services, especially

' The parties have consented to the filing of this brief under S.Ct. R. 37.2,

and their letters of consent have been lodged with the Clerk of the Court.

Pursuant to S.Ct. R. 37.6, amici state that counsel for a party did not

author this brief in whole or part and that no one other than amici, their

members, or their counsel rade a monetary contribution to the prepara-

tion or submission of this brief.

i a

to

peer-run services; (2) the use and acceptance of advance di-

rectives; (3) early intervention in helping people diagnosed

with mental illness and in providing them with information

and options; and (4) societal understanding and acceptance of

diversity.

Contac is a national technical assistance and resource

center for consumers/survivors and consumer-run organiza-

tions across the United States, promoting self-help, recovery

and empowerment. Contac was developed utilizing research

on ideal consumer self-help programs, successful consumer-

run programs, community support service philosophy about

service delivery, descriptions of mature mental health sys-

tems, and management and leadership skills.

The Madness Group operates a decentralized electronic

forum and distribution device for exchanging information

about methods for advocating social change. The group also

distributes resources of use to people who have psychiatric

histories.

The Mental Health Empowerment Project, Inc., is a not-

for-profit corporation that starts self-help and advocacy

groups for mental health consumers and provides training in

psychiatric rehabilitation. It operates in several states with

state contracts or managed care public sector contracts.

Pennsylvania Protection and Advocacy, Inc., is the Gov-

ernor’s designated protection and advocacy system for per-

sons with mental illness. The majority of its Mental Health

Advisory Board members are individuals who have experi-

enced both institutional and community-based mental health

services, as have members of its Governing Board.

Plusabilities is a Georgia-based consumer/survivor-

owned and -operated business. Plusabilities contracts with

public mental health/mental retardation/substance abuse

agencies to conduct consumer and family satisfaction/service

evaluation/outcome measurement surveys, and provide peer

support to consumers/survivors moving into the community

from hospitals or other congregate settings.

United Self-Help is a consumer group in Hawaii that

works to keep people out of the hospital by promoting atten-

dance at support groups. Its members support the concept

that community-based services, including peer-run services,

are the most effective way to promote recovery in people

with mental illness.

Well Mind Association of Minnesota’s mission is to ex-

pand treatment options for people diagnosed with mental ill-

ness, to provide information about integrative health care for

these individuals, and to encourage their self-empowerment.

Sally Clay is an individual who has experienced manic-

depressive episodes (including some 19 hospitalizations)

since 1962, and has worked as a peer organizer and advocate

for over 18 years. She is currently working as a systems

manager or peer consultant with two grants from the Sub-

stance Abuse and Mental Health Services Administration,

one for Consumer-Operated Services and one for Women

and Vidlence. She credits her recovery to the services and

supports she has received in the community.

Margaret M. Geary, J.D., a mental health consumer, is a

Massachusetts attorney and member of the Supreme Court

bar practicing in the area of mental health law. She has rep-

resented many people who have been committed to state in-

stitutions and ts a strong advocate of the position that people

with mental illness can be served most effectively in the

community.

Steven LaMaster, M.S., is a rehabilitation practitioner for

ResCare, Inc., an agency that provides psychiatric rehabilita-

tion services, including a wide array of residential supports,

to people who experience difficulties in living, learning,

working, and socializing. The agency supports individuals’

right to self-determination regardless of the symptomatology

that they experience.

Barbara Lee, Ph.D., is a consumer of mental health serv-

ices and a clinical psychologist and policy and services re-

searcher, working with people who also have experienced

severe mental illness. As a professional, she has seen people

who had spent long periods if imetitutions, with little or no

progress there, make a successful transition to living in the

community, with the appropriate services and supports.

Alexander R. McNaught was diagnosed with schizonhre-

nia 22 years ago. Except for bref hospitalizations totaling

two months, he has lived and continues to live successfully in

the community.

Laura McRae, who has been repeatedly hospitalized for

mental illness, lives and works in the community. She char-

acterizes her hospital experience as “warehousing,” with very

little in the way of treatment or activities, and the absence of

power over her own life.

David Shaver is executive director of Consumer Support

Services (CSS), which operates a mental health comunity

center, funded by the State of Florids Department of Children

and Families and the City of Jacksonville. CSS has a mem-

bership of over 300 persons with mental illness, approxi-

ntately 30 percent of whom have been long-term residents of

state mental hospitals. CSS supports the development of

community placements and supports for people in institu-

ons.

Laura Van Tosh is a person with a psychiatric disability

who has been institutionalized in the mental health system

and has benefited from community-based programs. She has

participated in psychosocial and vocational programs and has

used the Americans with Disabilities Act to secure reason-

able accommodations in employment. Ms. Van Tosh is now

an advocate and a consultant in the health care field. She

credits her recovery to caring professionals, self-help, ad-

vances in treatment, and the opportunity to live in the com-

munity.

SUMMARY OF ARGUMENT

This brief will examine the critical relationship between

community services and the integration mandate at issue in

this case. Amici are individuals and organizations of indi-

viduals who have experienced both institutional and commu-

nity-based mental health services. Through some of our in-

dividual stories and supporting professional literature, we

will document that community-based services provide myr-

iad opportunities for interaction between people with and

without disabilities, promote recovery, and lead to a more

enjoyable, fulfilling life.

The state of Georgia and its amici argue that this Court

should give discretion to the states to decide where and how

to serve people with disabilities. They ignore, however, that

their discretion can and has resulted in people with disabili-

ties living under conditions of great and unnecessary restric-

ion, with limited contact with non-disabled individuals anc

very little personal freedom for many years. Political pres-

sure, bureaucratic inertia, job concerns of hospital employ-

ees, neighborhood resistance and other factors have too often

taken precedence over the nghts of people with disabilities

who could be served in the community. This is particularly

egregious given that community-based services are less ex-

pensive than institutional care.

The integration mandate of the Americans with Disabili-

ties Act requires that people with disabilities be allowed the

same freedoms that people without disabilities take for

granted: the ability to see family, friends, neighbors and

co-workers; to go to church, the movies, shopping, the li-

brary or simply to go outside; to hold a job, enjoy a hobby or

volunteer for a cause. It is these personal liberties that are at

stake in this case.

We begin with personal accounts illustrating the benefits

of living in the community as opposed to institutional care.

It is important to note that none of the people whose stories

are told below were released from an institution because they

had “recovered.” In every case—and this is typical of most

people who have spent significant periods of time in an in-

stitution—they were released either due to changes in policy,

or through their own efforts or those of their advocates.

After recounting these stories, we describe the array of

services that may be found in a community-based mental

health system. Not every person with a disability will need

the same kinds of service. Each of the individuals whose

lives we describe receive some of these services according to

their needs. In this section of the brief, we give a more tech-

nical description of these services and conclude with a re-

view of the professional literature confirming the benefits of

integrated services.

ARGUMENT

I. PERSONAL ACCOUNTS OF THE BENEFITS

OF INTEGRATED SERVICES

For someone who has never been in an institution, the

stark contrast between community and institutional life is

difficult to imagine. But those who tell their stories below,

or whose stories are told by others, don’t have to imagine; all

have spent years living in institutions. Now, each is living

successfully in the community. These stories are not atypical.

They represent personal accounts of the well-documented

positive outcomes of integration: the ability to be part of a

community which includes people with and without disabili-

ties; greatly increased fulfillment and productivity as workers

and volunteers; and more rapid recovery as an individual

makes choices, learns skills in a natural environment such as

a home or a workplace, and forms meaningful relationships.

A. Jane D.

Jane D., a woman in her fifties, had lived in the state hos-

pital for many years. Jane experienced significant reductions

in physical injury and neglect when she was discharged to a

smaller, more integrated setting. Her recent discharge into

the community radically improved her life.” According to her

advocate,

this lady had taken so many falls in the state

hospital and had broken her leg so many

times, they thought they would have t> am-

putate. She was incontinent and ‘gray’: she

had gray hair, gray skin and a gray look. I

never saw her move; she was parked in a chair

all day, every day. She was locked in a dining

room, and had no independent access to a

bathroom. They had to sit in the locked room

and wet themselves.’

When Jane was released into the community, it was

thought that she had dementia, so she was at first placed in a

restrictive program. However, very soon she was moved to

an unlocked group home. After this transition, her advocate

did not recognize her when I went to visit her.

She was outside, beautifully dressed, and she

talked to me. In a year and a half [that I saw

her] at the state hospital, she never talked.

Now she was alert and lively. The staff said

Telephone interview with Diana Carra Haugh, Advocacy Specialist,

Pennsylvania Protection & Advocacy (February 11, 1999).

3

Id.

she hasn't been incontinent since two weeks

after she came here. Obviously she now lived

in a place where she could get to the bathroom

and had fun, interests, stimulation; she had

decided to go on living. There were no more

falls [because] her medication was drastically

reduced. She likes to walk, she participates in

church groups, she likes to go shopping. Her

favorite thing is going to flea markets. She

has friends. Try to picture a gray, quiet, frail

woman who didn’t engage or express any-

thing. Now picture someone with a big smile,

beautifully dressed, striding down the lawn.”

B. James Price

James Price, now in his mid-40s, spent much of his life in

an institution, but now has achieved independence in his own

apartment and fulfillment in volunteer activities and family

relationships. Mr. Price spent 10 years of his youth in Penn-

hurst State School. Later, as an adult, he was in Norristown

State Hospital for two or three years. He was subsequently

admitted to Philadelphia State Hospital, and spent five or six

years there. He described the conditions at the hospital. “It

was hard living there,” he recalled. “I had to stay in a day

room and wasn’t able to get out. We had a dormitory with

eight to ten people. I got in trouble there a lot. They would

put me in seclusion and restraints and give me needles.”

For the last eight years, however, he has lived in his own

apartment in Philadelphia, and he enjoys his freedom. He

worked for the Philadephia Department of Sanitation for five

4

Id.

Telephone interview with James Price (Feb. 9, 1999).

years. Now he lives off what he receives from Social Secu-

rity Disability Insurance. He contrasts his life in the hospital

to his current life in the community:

Now that I am out, I don’t smoke or drink

anymore. I go to Cocaine Anonymous meet-

ings and serve coffee. I help out at Zion Bap-

tist Church stuffing envelopes. A deacon gets

me to help him move disabled people into

apartments. I go to the park, do my own

shopping and cooking. I see my mother, my

brothers and sisters. I go to movies some-

times on Sundays with one of my friends.

Sometimes my niece comes over and spends

the night. She's eight or nine years old. I

make sure she eats: I cook for her or take her

to McDonald’s or Burger King. That's fun.”

C. Michael J. Kennedy

Michael Kennedy's personal account reveals that institu-

tions, in their isolation from public view and low staffing,

tend to allow more abuse and neglect to continue. However,

his story also shows the myriad of opportunities for a pro-

ductive life in the community. He is married, owns his own

home, and works as an advocate for people with disabilities

at Syracuse University’s Center on Human Policy.

Born with cerebral palsy, Mr. Kennedy was placed in an

institution in New York State at the age of five. He was

transferred from there to another institution, and from there

to a third. He finally won his release when he was 21.

6

Id.

Telephone interview with Michael Kennedy (Feb. 11, 1999)

10 11

His years in the institution were marked by neglect. He ment was in the community. I was viewed as belonging to

attended a segregated school on the grounds of the state in- the community and could experience being around people

stitution where | without disabilities.”

all we did was watch ‘Sesame Street’ on TV Michael Kennedy is one of many individuals who have

every morning. We put pegs in a peg board for spent significant periods of their lives in institutions and who

the other half of the morning. Then we went was able to make a successful transition back to the commu-

to lunch, and then we took naps until it was nity. His life now has much in common with the lives of his

time to go back to the unit. When I outgrew neighbors.

my braces, they took them away and never or-

dered me any more. My mother used to give

me physical therapy at home; they stopped

that, as a punishment.”

My wife and I both work; we are very active

members of our community and our church.

My wife has cerebral palsy as well; she also

uses a wheelchair. She's a vocational reha-

As a result of his educational neglect, he had no formal bilitation specialist.

education; he went back and got his General Equivalency

We’ llk and ted j

Diploma when he was 32 years old. He further describes cre very wel Known respected in our

very poor conditions in the hospital:

The hallways of the institution were dark and

dingy. It smelled like urine and feces; al-

though you didn’t see any, it smelled like it

because it was embedded in the tiles and the

floor. People would lay around naked half the

time. The staff members who cared didn’t

stay for very long. They couldn't stay and

watch what was going on, which included the

use of cattle prods and ammonia sprayed in

the eyes as punishment.”

neighborhood. We enjoy going away on va-

cation, we go to movies, we do the same

things anyone would do. In an institution, you

didn’t get those luxuries. If you did get to go

out of the institution, you went in groups.

You couldn't even strike up a relationship if

you wanted to. Freedom means a lot—that I

am somebody regardless of what my limita-

tions are. What | advocate for is that people

like me can live a normal life, regardless of

their disability. Part of my job is to make sure

that they get a fair shot."

After many years in institutions, Mr. Kennedy heard

about a supported apartment program and advocated to re-

ceive services in the community. In an article about his ex-

periences, he wrote, “What | liked most was that the apart-

10

Michael J. Kennedy, Turning the Pages of Life in J.A. Racino, et. al.,

; HOUSING, SUPPORT, AND COMMUNITY: CHOICES AND STRATEGIES POR

ld : ADULTS WITH DISABILITIES 206 (1993).

Id Telephone interview with Michael Kennedy (Feb. 11, 1999)

12

D. Bernie S.

Bernie's living situation perhaps best illustrates the dif-

ference between a hospital and a home. At age 21, Bernie

started hearing voices. His parents took him to a psychiatrist

who diagnosed him with paranoid schizophrenia and strongly

advised that he be institutionalized. After a year and a half at

the Institute of Pennsylvania Hospital, when his insurance

ran out, he was transferred to Haverford State Hospital,

where he stayed 22 years."

Bernie moved into a supervised group home in June

1998 He lives with four other men in a small white house

run by Elwyn Institute, in Elwyn, Pennsylvania. There are

several staff during the day and one person who remains on

duty during the night after 11 pm. His mother explains the

change in his opportunities and life as follows:

They live in a family atmosphere; it’s not in-

stitutionalized. Bernie and the other residents

cook together; they help the staff to prepare

meals; they buy their groceries. The staff and

the residents sit at the dining room table and

eat their meals together. They watch T.V. in

the living room or play games—Trivial Pur-

suit, Monopoly, you name it. Each person has

his own room. They have learned to wash and

dry their own clothes .... It ts not the same to

live in a hospital as to live in a house sur-

rounded by beautiful grounds, and flowers,

which they take care of. They live their lives

Telephone interview with Aimee S., mother of Bernie S. (Feb. |1,

1999)

ae Sw me eo

ee ees oer

13

like I live my life. I couldn’t ask for anything

better.”

Like many of the others described herein, Bernie now

participates in numerous activities that enrich his life and al-

low him to interact with people without disabilities. For ex-

ample, he goes on trips to attractions such as the Arboretum,

Ridley Park and the Philadelphia Museum of Art; an in-

structor teaches him T’ai Chi and a pastor comes every two

weeks to talk to him and other residents. Most importantly,

Bernie has begun initiating conversations. For 22 years in

the hospital, he talked very little, if at all. Now, when he and

his mother go to a restaurant, he will comment if she is not

eating. Recently, his mother noted that Bernie had spontane-

ously commented that she had cut her hair. In her words, “I

almost dropped dead. That’s something he would not even

mention before. Now he is much more alert to the environ-

ment because the staff 1s constantly stimulating him and the

other residents.” The small ratio of staff to resident allows

for more innovative programs and good guidance. Their as-

sistance has led to an enormous difference in his quality of

life and ability to socialize with other people.

“Id. A similar account can be found in the non-fiction book written by

reporter Michael Winerip, who followed the lives of residents of a mental

health group home in Glen Cove, New York. One of the residents, Fred

Grasso, had schizophrema and had been living in a two-hundred-bed fa-

cility which had been cited for numerous health and safety violations.

His mother expressed her great relief at the lovely group home, which

had a living room with a fireplace, a dining room, bedrooms and a well-

stocked kitchen. M. Winerip, 9 HIGHLAND ROAD 72-74; 101-104 (1994).

““You don't know what this means to me,’ Mrs. Grasso said, her eyes

filling with tears once more. “You don’t know.”” /d. at 74.

“ Telephone interview with Aimee S., mother of Bernie S. (Feb. 11,

1999).

Ee

14

E. Margaret Donahue

Margaret Donahue describes the increased privacy, op-

portunity for making her own choices and reduction of

symptoms that occurred when she was provided with inte-

grated services in the community.

Ms. Donahue, who is diagnosed with schizophrenia,

spent most of her life in institutions. These include Philadel-

phia State Hospital and Norristown State Hospital. She now

lives in Willow Grove, Pennsylvania, in a house she shares

with two other women, both of whom were also patients at

the state hospital. The house is a “supported living” resi-

dence, with round-the-clock staffing.

She has her own bedroom, and relishes her privacy. In

her words:

There's a lot of things you can do living in the

community, like go up to your room if you

want to be by yourself. In the hospital, there

were a lot of people. We had dormitories, six

people in each.

She has also experienced a reduction in her symptoms

and, thus, freedom from restrictive and sometimes painful

measures such as physical restraints. In the hospital, she re-

ported, she spent a lot of her time in restraints because of

- Telephone interview with Margaret Donahue (Feb. 10, 1999).

"Id. The indignities and lack of privacy in the hospital are also docu-

mented in an autobiography by Professor of Psychology Kay Redfield

Jamison. K. Jamison, AN UNQUIET MIND (1995). She writes, “My psy-

chiatrist repeatedly tried to persuade me to go into a psychiatric hospital,

but | refused. I was horrified at the thought of being locked up; being

away from familiar surroundings; having to attend group therapy meet-

ings; and having to put up with all the indignities and invasions of pri-

vacy that go into being on a psychiatric ward.” /d. at 112.

15

fighting and banging her head. In the community, she has

none of those problems. She entertains visitors, and some-

times goes to church. She also does her own housework, and

has a part-time job cleaning houses. In her own words:

It’s better living in my house [than in the hos-

pital] .... It's much better, because you have

staff 24 hours a day like in the hospital but

you can go to the bank, shopping, or Rite-Aid.

It’s better out here. It feels like you’re in your

normal home. You can't live in the hospital

all your life.”

Asked to name the main advantage of life in the commu-

nity over life in the hospital, she responded, “I like having

the power over my own life.”

F. Charles Q.

Charles Q. experienced a drastic change in his daily rou-

tine when he began to receive community services. Charles

was a patient in a Pennsylvania state hospital for some 40

years. Charles has mental retardation and, according to ad-

vocates who helped secure his release into the community, he

entered the hospital after an extended period of living in a

Car.

Hospital staff administered large doses of the medication

Thorazine, which had an adverse affect on his ability to

communicate. After a year in the hospital, he became incon-

tinent and nonverbal. He was eventually transferred to a

” Telephone interview with Margaret Donahue (Feb. 10, 1999).

is

Id.

7 Telephone interview with Diana Carra Haugh, Advocacy Specialist at

Pennsylvania Protection and Advocacy, Inc. (February 11, 1999).

16

back ward. There is very little in the files over the years

about what happened to him. Advocates discovered him in a

geriatric ward of the state hospital.”

According to one of his advocates, Charles “had almost

no speech, just a few repetitive phrases. He paced con-

stantly, and was not engaged in any meaningful activity. He

didn’t have a lot of attachments to anyone there.” Charles’

daytime activities were routine and unchanging for most of

the forty years he spent in the hospital. Each day, Charles

would

..get up about 6 or 6:30 in the morning, get

dressed, stand in line for medications for 20

minutes or a half hour, and nave his breakfast

tray brought to the unit. Then he would begin

to pace the halls. He might go outside: they

were allowed to go outside, if the weather was

good, twice a day to smoke a cigarette, sitting

on a bench behind the building. Then he

would have lunch, on a tray brought to the

unit. The afternoon again would be spent

pacing the halls, watching TV, sitting some-

where.... At 4 or 4:30 p.m. a tray of dinner,

then pacing the halls, watching TV, sitting in

a corner of the room not doing much of any-

thing. Then at 6 or 7 p.m. he'd take a shower,

pace the halis and then go to bed.

Once in a while recreation would come in and

he would agree to take a van ride, and come

back. They wouldn't go anywhere, just in the

20

Id.

‘ Telephone interview with Jacqueline Beilharz, Supervisor, Pennsylva-

nia Protection and Advocacy (February 11, 1999).

17

van to ride around for a while, and drive back

to the hospital. His only other contact with the

outside world was his sister, who would visit

occasionally.”

In 1997, Charles was released into the community. He is

now living in a group home with three other residents. Staff

members help him and the other residents learn “daily living”

skills while doing for them the things they have not yet

learned to do.

The staff have spent a lot of time helping Charles reinte-

grate into the community, including going to the grocery

store, clothes shopping, the movies, the library—things we

all do every day but that he hadn't had a chance to do in 40

years. Charles particularly likes to go to the library. For

years, no one knew he could read, but he enjoys reading. He

is also fully involved in the daily life of his home. He helps

cook dinner, and is learning to use the microwave. He can

already use all the other appliances. He goes grocery shop-

ping, and is learning to do his laundry. He enjoys music,

talking with staff, leisurely strolls around the neighborhood,

and various other recreational activities, such as going to

parks, restaurants, playing bingo and Jenga.

Most importantly, Charles is now actively participating in

his treatment meetings. He shares his preferences, stating the

things he likes and does not like to do. By interacting with

people in the community, Charles has learned not to swear or

tell people to get away from him. He has progressed rapidly

in the most integrated setting appropriate for him.”

~ Id.

” Id.

18

Il. COMMUNITY-BASED SERVICES ALLOW

PEOPLE WITH DISABILITIES TO OBTAIN

THE MAXIMUM INDEPENDENCE AND

INTEGRATION WHILE RECEIVING

TREATMENT AND SUPPORT

As the stories above demonstrate, an array of community-

based services is necessary to serve people with disabilities

in the most integrated setting appropriate to their needs. Not

every person with a disability will need all services. Gener-

ally, the individual with a disability and their treating profes-

sionals create a service plan that is designed to meet the per-

son's needs. Each of the individuals discussed above uses a

subset of services.

In contrast to the institution, a much wider variety of

services and creativity is possible in the community due to

increased staff and many more opportunities for learning

through work, volunteering, and community activities. The

institution, which is designed for congregate care of large

numbers of individuals by smaller staff, is ill equipped to in-

dividualize services and provide opportunities for growth.

Moreover, these higher quality community-based services are

more cost-effective than institutional care because they do

not require large overhead costs and people only use what

they need.

- ™ See Aileen Rothbard, et al., Service Utilization and Cost of Community

Care for Discharged State Hospital Patients: A Three-Year Follow Up

Study, American Journal of Psychiatry, December 9, 1998, at 2, 16 (study

of 321 people who were moved to the community from the institution

concluded that community-based treatment cost 50% less than institu-

tional care); Richard D. Budson, M.D., Community Residential and Par-

tial Hospital Care: Low-Cost Alternative Systems in the Spectrum of

Care, 65 PSYCH. QUARTERLY 209 (1994) (in Massachusetts program, per

diem costs of each alternative in continuum of community-based services

were significantly less than those in inpatient unit, with the most costly

community alternative being less than half as costly as hospitalization.

19

In this section, we describe the array of services in a

community-based system of care, rather than an institutional

one. We describe general categories of services and then

give specific examples. It should be noted that although the

categories are general, there is sometimes different terminol-

Ogy to indicate the same service. For example, in some sys-

tems, a case manager is referred to as a service coordinator.

Here, we give the most common categories and the defini-

tions to explain what we mean by a community-based mental

health service system. The institutions that we have experi-

enced typically have a much smaller array of services, often

limited to infrequent group or individual therapy and re-

stricted recreational activities (such as a van ride that does

not allow us to leave the van or board and card games).

Costs in community treatment facilities were kept down through staffing

patterns that maximized care while minimizing costs, and due to the lack

of administrative overhead required in hospital setting); Herbert Ben-

gelsdorf, M.D. et al., The Cost Effectiveness of Crisis Intervention: Ad-

mission Diversion Savings Can Offset the High Cost of Service, 181 J.

NERVOUS & MENTAL DISEASE 757 (1993) (documenting considerable

cost savings achieved by using crisis intervention services and other

community-based services for individuals who otherwise would have

been hospitalized).

20

A. A Community-Based Mental Health System™

1. Treatment: Treatment services are both diagnostic

and therapeutic. Generally, they are provided by profession-

als or trained personnel to evaluate the nature and extent of

an individual’s disability and to provide help with learning

about and coping with the disability. Treatment services may

be provided by an individual or as part of a team process.

A list of potential treatment services may include: 1) in-

take screening, comprehensive evaluation/assessment and

treatment planning; 2) medication therapy and monitoring;

3) outpatient counseling (individual, family and group coun-

seling); 4) mobile community outreach and treatment; 5) cri-

sis intervention and stabilization; 6) intensive day treatment;

7) assistive technology.

2. Residential services: Supportive services can be pro-

vided as a complement or as part of a range of housing op-

tions. Such services should be flexible, increasing or de-

creasing in intensity based on the individual’s needs. Minor

home or environmental modifications or adaptive equipment

” See Center for Mental Health Services, Mental Health Directory 1995

at vii-ix (listing mental health organizations and program elements), “A

Service Development Plan for a Comprehensive System of Public Mental

Health Care in Compliance with the Orders of the Court in Dixon v. Sul-

livan and Dixon,” July 1991 (Approved and ordered on January 27, 1992,

U.S.D.C. for the District of Columbia, Civil Action 74-285 (AR)); Bar-

bara Wright, What Legislators Need to Know About Mental Retardation

and Developmental Disabilities, National Conference of State Legisla-

tures (Feb. 1990); State of Alabama, Department of Mental Health and

Mental Retardation Five Year Plan FY 93-94 to FY 97-98 at 46-51; K.

Charlie Lakin and Mary Hayden, Final Report to the Health Care Fi-

nancing Administration: An Evaluation of Implementation of the Medi-

caid Community Supported Living Arrangements (CSLA) Program in

Eight States 22-23 (1996); Beth Stroul, Crisis Residential Services in a

Community Support System: Report on the NIMH Crisis Residential

Services Project 6-10 (1987).

21

can be used to improve a person’s residence to allow for

community living, safety, security and accessibility.

Some residential options include: 1) group homes; 2) in-

dependent apartments; 3) family or foster (also known as

family care) homes; 4) semi-independent apartments;

5) board and care residences.

3. Rehabilitation services: Rehabilitation Services are

therapeutic activities designed to improve living skills and to

assist the person with a disability in realizing their potential

for independence and for useful and productive activity, such

as work.

Rehabilitation Services include: |) day programs; 2) psy-

chosocial rehabilitation; 3) educational services; 4) prevoca-

tional services; 5) work adjustment training; 6) supported

work and transitional employment programs.

4. Support Services: Support services assist the person

with a disability in their daily life. They are often used to

ensure that people with disabilities can access resources such

as entitlement benefits, medical care and related services.

These services also can assist a person in developing rela-

tionships key to their success and stability in community

living. Case management services, in particular, are impor-

tant in a helping to create an integrated set of services from

an often otherwise fragmented array of state and local re-

sources. Support Services include: 1) case management;

2) intensive case management; 3) family supports; 4) social

clubs; 5) advocacy; 6) personal care/home health aide;

7) homemaker and chore services; 8) peer support/self-help

group; 9) respite care.

As previously noted, a plan is created from the array of

services. For example, named plaintiff L.C. receives several

community services to meet her needs. L.C. resides at Nya-

sha House, a group home which provides intensive support

and trained staff who counsel L.C. when she becomes frus-

22

trated. Staff have found innovative ways to help her deal

with these feelings. L.C. also receives psychotropic medica-

tions daily. On Monday, Wednesday, and Friday mornings,

she attends Community Friendship, which is a day program

where she has been receiving educational services and has

worked in a supported environment. She has made frequent

trips to the library and the homes of staff, and has had other

opportunities to interact with the community.”

II. THE PROFESSIONAL LITERATURE

CONFIRMS THAT COMMUNITY-BASED

MENTAL HEALTH SERVICES ALLOW FOR

MORE SOCIAL INTERACTION WITH NON-

DISABLED PEOPLE, BETTER RECOVERY,

AND GREATER HAPPINESS AND

FULFILLMENT.

The professional literature establishes that individuals

such as L.C. and those whose stories are told above achieve

better outcomes in the community. First, professional lit-

erature reflects the view that providing services in commu-

nity settings is critical to fostering social integration because

such settings provide opportunities for individuals with dis-

abilities to develop social relationships and to engage in ac-

tivities with people without disabilities. These opportunities

cannot arise in an institutional setting. Dr. William A. An-

thony, Executive Director of the Center for Psychiatric Re-

habilitation at Boston University, notes that:

[To achieve] recovery, people need to learn

new skills and be provided with appropriate

supports. The hospital setting impedes the

learning of skills that are needed in the com-

munity and, by definition, the community

* Elliot eval.. Exh. 14, R59 (Plaintiffs’ Statement of Material Facts with

Motion for Summary Judgement, filed 8/19/96).

23

supports that are needed can’t be provided

within the hospital. These community sup-

ports are essentially people, places, things,

and activities ....

In addition, community services are virtually always

more effective than institutional services in terms of out-

comes achieved. Studies show that non-institutional care had

better outcomes in almost every case concerning employ-

ment, school attendance, and other factors.” In addition, in-

” Telephone interview with William A. Anthony, Ph.D. (Feb. 25, 1999).

See also William A. Anthony, Recovery from Mental Illness: The Guid-

ing Vision of the Mental Health Service System in the 1990s, 16

PSYCHOSOCIAL REHABILITATION J., APRIL 1993, at 11 (mental health

recovery requires not just mental health services but other activities such

as participation in sports, clubs, adult education, and church activities);

Barbara Wright & Martha P. King, National Conference of State Legis-

latures, Americans with Developmental Disabilities: Policy Directions for

the States 21 (Feb. 1991) (community living benefits individuals with

disabilities by permitting increased independence, sense of competence,

improved relationships with family and friends, and increased respect,

dignity, and sense of belonging); Paul J. Carling, RETURN TO

COMMUNITY: BUILDING SUPPORT SYSTEMS FOR PEOPLE WITH

PSYCHIATRIC DISABILITIES 255 (1995) (providing supportive services

within integrated community settings and ensuring that consumers have

opportunities to engage in “normal” social interactions enhance social

integration); Zana Marie Lutfiyya, Center on Human Policy, Reflections

on Relationships between People with Disabilities and Typical People

(Aug. 1988) (enforced segregation in large congregate facilities rein-

forces the idea that people with disabilities are too “different” to contrib-

ute to society, and reduces opportunities for enhancing social integration

through social relationships, diversity of social connections, and intimacy

in relationships).

2

A. Kiesler, Mental Hospitals and Alternative Care: Noninstitutionali-

zation as potential Public Policy for Mental Patients, 37 AM.

PSYCHOLOGIST 349, 357-58 (Apr. 1982).

24

dividuals discharged from state institutions show signifi-

cantly improved functioning and behaviors.»

Finally, individuals who use mental health and mental

retardation services overwhelmingly prefer community-based

services to institutional services. As Dr. Anthony notes,

“{t}he preference studies indicate that psychiatric patients

prefer to live in the community rather than the hospital, so

you have a much better motivational base for interventions,

because the people are in the spot they prefer. It’s hard to do

helpful interventions when the person is not in the spot they

wish to be in.”

” James Conroy et al., A Matched Comparison of the Developmental

Growth of Institutionalized and Deinstitutionaliced Mentally Retarded

Clients, 86 AM. J, MENTAL DEFICIENCY 581 (1982) (individuals dis-

charged from state institution to community placements showed signifi-

cantly improved functioning and adaptive behavior after two years). Paul

J. Carling, Major Mental Illness, Housing, and Supports, 45 AM.

PSYCHOLOGIST 969, 971 (Aug. 1990) (studies indicate that “community-

based treatment is virtually always as effective or more effective than

hospital-based treatment in helping people with psychiatric disabilities to

achieve employment outcomes, to gain re-entry into the community, and

to reduce the use of medication and outpatient services.”).

‘i Telephone interview with William A. Anthony, Ph.D. (Feb. 25, 1999).

See also Aileen B. Rothbard & Eri Kuno, The Success of Deinstitutionali-

zation: Empirical Findings from Case Studies on State Hospital Closures,

J. INTL LAW & PSYCHIATRY, January 28, 1999, at 3-4; Te-wei Hu &

Jaclyn W. Hausman, Institute for Mental Health Services Research

Working Paper No. 4-94, Cost-Effectiveness of Community-Based Care

for Individuals with Mental Health Problems 26 (July 1994) (individuals

in community-based programs reported higher satisfaction and improve-

ment of quality of life); John Lord & Alison Pedlar, Life in the Commu-

nity: Four Years After the Closure of an Institution, 29 MENTAL

RETARDATION 213, 219 (1991) (virtually all individuals in study, who

had been moved from institutional setting to group home four years ear-

lier, were happier in community); Paul J. Carling, Major Mental Illness,

Housing, and Supports, supra, at 971 (research indicates that people with

25

The professional literature reflects the conclusions of the

stories herein and the experiences of amici. All people want

to live in homes, to be productive and to engage in meaning-

ful activity. When such opportunities are provided in com-

munity-based settings, individuals with disabilities achieve

better outcomes, have more interaction with people who do

not have disabilities, and are generally happier and more ful-

filled.

CONCLUSION

The people whose stories are told above are only a few of

the individuals whose lives will be affected by the outcome

of this case. The ruling in this case will determine whether

the states can continue to segregate people in institutions—

people who are capable of living successfully in the commu-

nity—and to deprive them of the freedom to control their

own lives. The ruling will also determine whether the Ameri-

cans with Disabilities Act—the landmark civil rights statute

for people with disabilities—gives people who have disabili-

ties meaningful and equal opportunities in their daily lives, or

whether these opportunities will be rationed. Finally, this

case will decide whether a civil rights statute, similar in in-

tent to the Voting Rights Act, the Fair Housing Act, and the

Ci\ il Rights Act of 1964, will be enforced equally across the

country, or whether individual states can decide how many

civil rights should be accorded to a minority population that

has suffered historic discrimination.

In consideration of the serious issues at stake, this Court

should affirm the Court of Appeals, on the ground that peo-

ple with disabilities have a right to the same basic freedoms

as all other citizens.

psychiatric disabilities value independence and productivity more than

any other treatment outcomes).

McKINLEY

333 Race Stree

Philadeiph