United States General Accounting Office 

GAO 	 Report to the Chairman, Subcommittee 

on Oversight and Investigations, 

Committee on Energy and Commerce, 

House of Representatives 

September 2003 PROTECTION AND 

ADVOCACY 

AGENCIES 

Involvement in 

Deinstitutionalization 

Lawsuits on Behalf of 

Individuals with 

Developmental 

Disabilities 

GAO-03-1044 

Highlights of GAO-03-1044, a report to the 

Chairman, Subcommittee on Oversight 

and Investigations, Committee on Energy 

and Commerce, House of Representatives 

Congress established the 

Protection and Advocacy system in 

1975 to protect the rights of 

individuals with developmental 

disabilities, most of whom have 

mental retardation. Protection and 

Advocacy agencies (P&A) use 

investigative and legal activities to 

advocate on behalf of these 

individuals. Deinstitutionalization 

has refocused delivery of care to 

this population over the last several 

decades from large public 

institutions to community settings. 

Refocusing service delivery 

resulted from (1) the desire to 

deliver care in the most integrated 

setting and to control costs and 

(2) the outcomes of 

deinstitutionalization lawsuits 

brought by P&As and others. Some 

parents have raised concerns that 

P&As emphasize these suits over 

other activities, inadequately 

inform them of family members’ 

inclusion in the suits, and do not 

adequately monitor individuals 

after their transfer to the 

community. GAO was asked to 

review the extent to which P&As 

engage in lawsuits related to 

deinstitutionalization of these 

individuals, how P&As 

communicate with affected parents 

and guardians in these suits, and 

the role P&As have played in 

monitoring the well-being of 

individuals transferred to the 

community. GAO compiled a 

national list of lawsuits related to 

deinstitutionalization involving 

P&As and reviewed the suits and 

related activities in three states— 

California, Maryland, and 

Pennsylvania. 

www.gao.gov/cgi-bin/getrpt?GAO-03-1044. 

To view the full product, including the scope 

and methodology, click on the link above. 

For more information, contact Kathryn G. 

Allen at (202) 512-7118. 

September 2003 

PROTECTION AND ADVOCACY 

AGENCIES 

Involvement in Deinstitutionalization 

Lawsuits on Behalf of Individuals with 

Development Disabilities 

Lawsuits related to deinstitutionalization brought on behalf of persons with 

developmental disabilities are a small part of P&As’ overall activities for this 

population. GAO identified 24 such lawsuits that P&As filed, joined, or 

intervened in from 1975 through 2002. During the same period, P&As filed or 

intervened in 6 of these lawsuits in the three states GAO reviewed— 

California, Maryland, and Pennsylvania. Three of the 6 were settled as class 

actions; the other 3 were intended, but not settled, as class actions. One is 

ongoing, one was dismissed, and one was settled by multiparty agreement. 

P&As’ communications with parents and guardians regarding the lawsuits in 

the three states were consistent with federal rules. For the three suits 

settled as class actions, P&As complied with the requirement to provide 

notice to all class members when a settlement agreement is proposed to the 

court. Such notice was not required in the other three cases, which were not 

class actions. Representatives of some parent groups told GAO that parents 

and guardians were dissatisfied with the extent of P&A communication with 

them before a settlement was proposed, citing problems such as not 

receiving notice of a family member’s inclusion in the class, which the parent 

or guardian opposed. P&As in the three states told GAO they did not 

communicate with every person potentially affected by the six lawsuits 

before a proposed settlement agreement, although they did communicate 

with organizations representing some parents and guardians during that 

time. However, even if P&As had made such notification, under the 

applicable federal rule of civil procedure, an individual has no explicit right 

to opt out of the class in this type of case. 

P&As in the three states assumed various roles in monitoring the health and 

well-being of individuals transferred to community settings in four of the five 

resolved lawsuits we reviewed, although state developmental disabilities 

services agencies have the primary responsibility for ensuring the quality of 

services provided to these individuals. P&As’ roles varied with the 

circumstances of the lawsuits and the initiatives P&As in the three states 

undertook using their authority to protect and advocate the rights of 

individuals with developmental disabilities. For example, although the three 

class action settlement agreements did not specify monitoring roles, the 

P&As assumed roles, such as reviewing information about the quality of 

community services that the settlement agreements required the states to 

develop and reviewing care plans of individuals who had been transferred. 

Representatives of some parent groups told GAO that parents and guardians 

have been dissatisfied with the adequacy of the P&As’ monitoring role in 

community placements, while representatives of other parent groups said 

they generally supported the P&A monitoring role. 

The Administration for Children and Families said GAO’s analysis of the 

three P&As’ involvement in deinstitutionalization lawsuits is thorough and 

the P&As GAO reviewed said that the report is accurate. 
Contents 


Letter 

Results in Brief 


Background


Lawsuits Related to Deinstitutionalization Are a Small Part of P&A 


Activities 

P&As in Three States Used Litigation to Address a Small 

Percentage of Client Problems 

P&As’ Communications in Three States Were Consistent with 

Federal Rules but Not as Comprehensive as Some Parents 

Desired 

P&As in the Three States Assumed Various Roles in Monitoring 

Individuals Transferred to Community Settings 

Agency and Other Comments 

1 

5 

6 

10 

13 

15 

18 

22 

Appendix I Objectives, Scope, and Methodology 

Appendix II 	 P&A Lawsuits Related to Deinstitutionalization 

for Individuals with Developmental Disabilities, 

1975–2002 

Appendix III 	 Comments from the Administration for Children 

and Families 

Appendix IV GAO Contact and Staff Acknowledgments 29 

GAO Contact 29 

Acknowledgments 29 

Related GAO Products 30 

Tables 

Table 1: Lawsuits Related to Deinstitutionalization That P&As Filed 

or Intervened in on Behalf of Individuals with 

Page i GAO-03-1044 Protection and Advocacy Agencies 

24 

26 

27 
Developmental Disabilities in California, Maryland, and 

Pennsylvania, 1975–2002 11 

Table 2: P&A Services Used to Address Problems of Individuals 

with Developmental Disabilities in California, Maryland, 

and Pennsylvania, Fiscal Years 1999–2001 14 

Table 3: Roles P&As Assumed in Monitoring Individuals Affected 

by Lawsuits Reviewed in California, Maryland, and 

Pennsylvania 19 

Abbreviations 

ACF Administration for Children and Families 


ADD Administration on Developmental Disabilities 


CMS Centers for Medicare & Medicaid Services 


DD Act Developmental Disabilities Assistance and Bill of Rights 


Act of 2000 

FRCP Federal Rules of Civil Procedure 

HCBS home and community-based services 

IPP Individual Program Plan 

HHS Department of Health and Human Services 

ICF/MR intermediate care facility for the mentally retarded 

OIG Office of Inspector General 

NAPAS National Association of Protection & Advocacy Systems, 

Inc. 

P&A Protection and Advocacy agency 

VOR Voice of the Retarded 

This is a work of the U.S. government and is not subject to copyright protection in the 

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Page ii GAO-03-1044 Protection and Advocacy Agencies 
United States General Accounting Office 

Washington, DC 20548 

September 30, 2003 

The Honorable James C. Greenwood 

Chairman, Subcommittee on Oversight 

and Investigations 

Committee on Energy and Commerce 

House of Representatives 

Dear Mr. Chairman: 

Congress established the Protection and Advocacy system in the states 

and territories in 1975 to protect and advocate the rights of individuals 

with developmental disabilities, most of whom have mental retardation.1

 In 

fiscal year 2002, the 57 Protection and Advocacy agencies (P&A) received 

$35 million in federal funding for this purpose.2

 To advocate on behalf of 

individuals with developmental disabilities, P&As undertake a range of 

administrative, information and referral, investigative, and legal activities. 

These activities can include representing individuals with developmental 

disabilities in lawsuits. Some of these lawsuits have resulted in moving 

individuals with developmental disabilities from institutional care settings 

to care settings in the community such as group homes and apartments, a 

process that is referred to as deinstitutionalization. Some parents and legal 

guardians of individuals involved in these suits have supported P&A 

efforts in bringing these suits and implementing the settlements that have 

resulted. Other parents and guardians of individuals affected by these 

suits, however, have organized to oppose the suits and the implementation 

1

The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act), Pub. L. 

No. 106-402, 114 Stat.1677. Predecessor acts include the Developmental Disabilities 

Assistance and Bill of Rights Act, Pub. L. No. 97-35, title IX, subtitle B, 95 Stat. 563 (1981) 

and the Developmentally Disabled Assistance and Bill of Rights Act, Pub. L. No. 94-103, 89 

Stat. 486 (1975). Developmental disabilities include mental retardation, autism, and 

cerebral palsy. Individuals with developmental disabilities generally require lifelong 

residential support. For a more detailed explanation of developmental disabilities, see the 

DD Act, § 102(8), 114 Stat. 1683 (classified to 42 U.S.C. § 15002 (8)), and 45 C.F.R. § 1385.3 

(2002). 

2

The Administration on Developmental Disabilities in the Department of Health and Human 

Services provides funding under the DD Act to P&As in the 50 states, the District of 

Columbia, territories, and the Native American consortium located in Shiprock, New 

Mexico. 

Page 1 GAO-03-1044 Protection and Advocacy Agencies 
of certain aspects of court-approved settlements because of concerns they 

have regarding the care of their family members.3 

Deinstitutionalization of individuals with developmental disabilities has 

changed the way that services are provided for this population over the 

last several decades as states have moved their focus of care from large, 

public institutions to settings in the community. These large facilities are 

usually intermediate care facilities for the mentally retarded (ICF/MR) 

certified to participate in Medicaid. From 1980 through 2002, the average 

daily number of people with developmental disabilities living in large 

institutions declined from about 131,000 to about 44,000 as states 

downsized or closed such institutions.4

 This change occurred for several 

reasons, including a greater emphasis on providing services in the most 

integrated setting, states’ desires to control costs, and the outcomes of 

certain lawsuits. As a result, individuals in large facilities today are mostly 

adults who have lived in institutions for many years because fewer 

individuals are being admitted to such facilities and instead are receiving 

their care in community settings. Care in large, public institutions for 

individuals with developmental disabilities is no longer provided in eight 

states and the District of Columbia, and the number of individuals 

receiving institutional care has declined in most other states.5

 Many of the 

former residents of institutions now receive care in group homes or other 

community settings as do many other individuals who were never 

residents of institutions. Altogether, more than 420,000 individuals with 

developmental disabilities were receiving care in community settings as of 

June 30, 2002.6

 The largest source of public funding for these institutional 

and community services is Medicaid, the federal-state program that 

3

Except as noted, we use the phrase “parents and guardians” to refer to parents, other 

family members, and legal guardians acting on behalf of their adult children or dependents 

in institutions. Family members may also be legal guardians. In some instances, legal 

guardians may not be family members. 

4

See Kathryn Coucouvanis et al., “Current Populations and Longitudinal Trends of State 

Residential Settings (1950-2002),” in R.W. Prouty, Gary Smith, and K.C. Lakin, eds., 

Residential Services for Persons with Developmental Disabilities: Status and Trends 

Through 2002 (Minneapolis, Minn.: University of Minnesota, Research and Training Center 

on Community Living, Institute on Community Integration, 2003), 7. 

5

As of June 30, 2002, Alaska, the District of Columbia, Hawaii, Maine, New Hampshire, New 

Mexico, Rhode Island, Vermont, and West Virginia no longer operated large institutions for 

persons with developmental disabilities. 

6

See K. Charlie Lakin et al., “Utilization of and Expenditures for Medicaid Institutional and 

Home and Community Based Services,” in Residential Services for Persons with 

Developmental Disabilities, 104. 

Page 2 GAO-03-1044 Protection and Advocacy Agencies 
finances health care coverage for certain low-income and disabled 

populations. State developmental disabilities services agencies administer 

most of the services provided to this population and have primary 

responsibility for monitoring these services in institutions and in 

community settings. 

In advocating on behalf of individuals with developmental disabilities in 

institutions, P&As and others7

 have filed, joined, or intervened in lawsuits 

relating to deinstitutionalization. Some of these lawsuits have been class 

action lawsuits on behalf of classes of individuals. Deinstitutionalization 

lawsuits brought against large, public institutions have alleged 

inappropriate care and treatment, including abuse and neglect of 

residents, and breaches of statutory and constitutional rights. Some of 

these suits have lasted for years, and the courts’ decisions have sometimes 

taken additional years to implement after the cases have been decided. 

Some parents opposing these P&A efforts have expressed concerns that 

P&As emphasize deinstitutionalization lawsuits over other activities; that 

P&As do not adequately communicate with parents and guardians of 

individuals potentially affected by these lawsuits, such as notifying them 

of the inclusion of their family members in the suits; and that P&As do not 

assume adequate monitoring roles for the health and well-being of 

individuals moved from institutions to community settings in such suits. 

Because of these concerns, you asked us to review certain P&A activities. 

We examined (1) the extent to which P&As engage in litigation related to 

deinstitutionalization on behalf of individuals with developmental 

disabilities, (2) how P&As have communicated with parents and legal 

guardians in deinstitutionalization lawsuits, and (3) the role, if any, that 

P&As have played in monitoring the health and well-being of individuals 

transferred from institutions to community settings within the context of 

these lawsuits. 

To examine the extent to which P&As engage in litigation related to 

deinstitutionalization on behalf of individuals with developmental 

disabilities, we analyzed several data sources and consulted with national 

and state organizations because there is no single, national source of 

information on P&A litigation activities. We contacted the Administration 

7

Litigation focusing on the legal rights of institutionalized persons with developmental 

disabilities also has been filed by attorneys working for public legal assistance programs, 

such as public interest law centers and legal aid societies, as well as by private attorneys 

and the Department of Justice. 

Page 3 GAO-03-1044 Protection and Advocacy Agencies 
on Developmental Disabilities (ADD), within the Administration for 

Children and Families (ACF), Department of Health and Human Services 

(HHS), which administers the Developmental Disabilities Assistance and 

Bill of Rights Act of 2000 (DD Act); the National Association of Protection 

& Advocacy Systems, Inc. (NAPAS), which represents P&As; the National 

Association of State Directors of Developmental Disabilities Services, 

which represents state developmental disabilities services agencies; and 

representatives of family advocacy organizations including Voice of the 

Retarded (VOR) and the Arc of the United States.8

 From these sources, we 

compiled a national list of lawsuits related to deinstitutionalization that 

P&As filed, joined, or intervened in on behalf of individuals with 

developmental disabilities from 1975 through 2002. To examine P&A 

activities more closely, we chose three states—California, Maryland, and 

Pennsylvania—that national organizations we consulted indicated are 

among the states with P&As that are more active in deinstitutionalization 

litigation. We examined all six lawsuits regarding deinstitutionalization in 

these three states that were in the national list of lawsuits we developed. 

To obtain information on P&A communication with parents and guardians 

in these three states, we interviewed P&A officials, representatives of state 

developmental disabilities services agencies, and representatives of parent 

groups. In addition, we reviewed federal and relevant state rules of civil 

procedure9

 concerning notification of class members in class action 

lawsuits. To obtain information on P&A roles in monitoring the health and 

well-being of individuals in the community, we interviewed P&A officials, 

analyzed settlement agreements and other documents related to the six 

lawsuits, and interviewed representatives of state developmental 

disabilities services agencies and parent groups. We did not independently 

verify the extent of P&As’ monitoring activities or assess their 

effectiveness. We did our work from October 2002 through September 

2003 in accordance with generally accepted government auditing 

standards. (See app. I for more details on our scope and methodology.) 

8

Formerly known as the Association for Retarded Citizens, the organization changed its 

name to the Arc of the United States in 1992. 

9

These rules govern the conduct of civil actions in federal district or state courts. 

Page 4 GAO-03-1044 Protection and Advocacy Agencies 
Results in Brief 
 Lawsuits related to deinstitutionalization that are brought on behalf of 

individuals with developmental disabilities are a small part of P&As’ 

activities for this population, both nationwide and for P&As in the three 

states reviewed. Nationwide, we identified 24 lawsuits that P&As filed, 

joined, or intervened in related to deinstitutionalization from 1975 through 

2002. Most, but not all, were intended to be class actions against large 

public institutions providing services to persons with mental retardation 

and related developmental disabilities. From 1975 through 2002, P&As in 

the three states we reviewed—California, Maryland, and Pennsylvania— 

filed or intervened in six lawsuits related to deinstitutionalization. Three of 

the six were settled in 1993 or 1994 as class action lawsuits. Three were 

not settled as class action lawsuits. Litigation in one of these suits is 

ongoing, the second was dismissed in 1999 after the institution concerned 

was closed, and the third was settled in 2001. For some of the lawsuits we 

reviewed, implementation of court decisions regarding 

deinstitutionalization continued for years after settlement. P&As in the 

three states reported that they used litigation of all types, including 

litigation related to deinstitutionalization, in 1.5 percent of client problems 

they addressed from fiscal years 1999 through 2001. These P&As reported 

that they addressed the vast majority of client problems through 

negotiation, technical assistance, and other assistance rather than through 

litigation. 

P&As in the three states communicated with parents and guardians as 

required by federal rules in the lawsuits we reviewed. In the three cases 

settled as class actions, P&As provided notice to all class members at the 

time settlement was proposed to the court, as required by federal rules. 

Two of these three lawsuits were certified in federal court and the third 

was certified in a state court that followed federal rules regarding 

notification of class members. Such notice was not required in the other 

three cases we reviewed that were not class action lawsuits. 

Representatives of some parent groups told us that they believed the P&As 

should have communicated with parents and guardians in the six lawsuits 

we examined before filing or intervening in the lawsuits, and prior to class 

certification by the court, even though P&As were not required to do so. 

P&As in the three states indicated that they did not try to communicate 

with all individuals potentially affected by the six lawsuits, including 

parents and guardians, during these stages of the lawsuits but that they did 

undertake some communication with organizations representing some 

parents and guardians of affected individuals during the lawsuits. 

However, even if P&As had made such notification to all potentially 

affected individuals, under the applicable federal rule of civil procedure, 

Page 5 GAO-03-1044 Protection and Advocacy Agencies 
an individual has no explicit right to opt out of the class in this type of 

case. 

P&As in the three states assumed various roles in monitoring the health 

and well-being of individuals transferred from institutions to community 

settings in four of the five deinstitutionalization lawsuits we reviewed that 

have been resolved, although state developmental disabilities services 

agencies have the primary responsibility for monitoring the quality of 

services provided to individuals with developmental disabilities. P&As 

assumed these roles even though not required to do so in the settlement 

agreements resulting from the lawsuits. For example, in the three class 

action lawsuits we examined, the P&A role has been to monitor some or 

all class members involved in settlement agreements. This monitoring role 

included reviewing information that the settlement agreements required 

states to develop about the quality of community services provided, 

conducting site visits, and reviewing plans of care. In the fourth case we 

reviewed in which the P&A had a monitoring role, the P&A reported that it 

had a role to assist families that experienced problems in community 

placements. Representatives of some parent groups told us that parents 

and guardians have been dissatisfied with the adequacy of P&As’ 

monitoring role in community placements, while representatives of other 

parent groups told us they generally supported the P&A monitoring role. 

In commenting on a draft of this report, ACF said it was a thorough 

analysis of the three P&As’ involvement in deinstitutionaliation lawsuits 

for the population examined. P&A officials in the three states that we 

reviewed said that the report is accurate and also provided technical 

comments. 

Background 	 The Protection and Advocacy system was established in 1975 and was 

most recently reauthorized in 2000 for 7 years. P&A activities on behalf of 

individuals with developmental disabilities include legal representation; 

information and referral services; training and technical assistance in selfadvocacy; short-term assistance, mediation and negotiation assistance to 

obtain benefits and services such as medical care and housing, 

transportation, and education; representation in administrative appeals; 

and investigation of reports of abuse and neglect, sexual harassment, 

inappropriate seclusion and restraint, and other problems. The 57 P&As 

include 46 that are private, nonprofit agencies; the other 11 are state 

Page 6 GAO-03-1044 Protection and Advocacy Agencies 
agencies. P&A staffing typically includes management, investigators, 

advocates, attorneys, and administrative staff.10 The P&A in one state we 

reviewed also contracted with another organization to conduct lawsuits on 

its behalf. 

ADD provides annual funding to P&As, the amount of which is determined 

by a formula that uses several measures, including state population 

weighted by relative per capita income in the state and a measure of the 

relative need for services by individuals with developmental disabilities. In 

fiscal year 2003, ADD funding for P&As was set at $36.3 million, a 

$1.3 million increase over fiscal year 2002. Funding amounts to states 

ranged from $345,429 to $2,978,192 for fiscal year 2003. For P&As in 

California, Maryland, and Pennsylvania, these amounts were $2,978,192, 

$468,934, and $1,388,495, respectively. P&As also may receive funding 

from other sources to serve individuals with developmental disabilities, 

including state and private funds. In addition, P&As often serve 

populations other than individuals with developmental disabilities and 

receive separate funding for that purpose.11 

Although state developmental disabilities services agencies are primarily 

responsible for arranging for the provision of services and oversight of 

quality for services received by individuals with developmental disabilities, 

the DD Act authorizes P&As to play an important role in monitoring these 

services. The DD Act authorizes P&As to investigate allegations of abuse 

and neglect when reported or if there is probable cause to believe that 

incidents occurred and to pursue legal, administrative, and other 

appropriate remedies or approaches on behalf of individuals with 

developmental disabilities. The act grants P&As access to individuals with 

developmental disabilities and to their records, including reports prepared 

by agencies or staff on injuries or deaths. Under this authority, P&As 

typically undertake monitoring efforts to review the adequacy of services 

that individuals receive in institutions and in community settings and to 

10According to a 2002 survey conducted by the HHS Office of the Inspector General (OIG), 

in which 49 of 57 P&As responded, the average P&A full-time-equivalent staff level was 31 

employees in fiscal year 2001. P&A staffing size ranged from 6 employees at the smallest 

P&A to 179 employees at the largest. See State Protection and Advocacy Programs for 

Persons with Developmental Disabilities, OEI-07-02-0090 (Washington, D.C.: April 2003). 

11Other populations served by P&As include individuals with mental illness, individuals 

with traumatic brain injury, individuals receiving Social Security benefits who wish to 

return to work, and individuals with any type of disability seeking access to assistive 

technology. 

Page 7 GAO-03-1044 Protection and Advocacy Agencies 
examine state oversight of quality assurance and regulatory compliance 

for residential services providers. 

Many individuals with developmental disabilities for whom P&As advocate 

are eligible to receive publicly financed residential services through 

Medicaid, which is the largest source of funds for services for individuals 

with developmental disabilities. State developmental disabilities services 

agencies have primary responsibility for monitoring the quality of services 

provided to individuals with developmental disabilities, including those 

services funded by Medicaid. In 2002, Medicaid financed 77 percent 

($26.8 billion) of the total $34.7 billion in total long-term care spending on 

individuals with developmental disabilities.12 Medicaid spending was about 

$10.9 billion for ICF/MR residents including those living in large 

institutions;13 about $12.9 billion for individuals with developmental 

disabilities receiving home and community-based services (HCBS) under 

Medicaid waivers; and an additional $2.9 billion for other services 

provided in community settings, such as personal care.14 

Residential choices for individuals with developmental disabilities vary by 

state since states choose whether to offer these individuals services in 

ICF/MRs, which is an optional rather than a mandatory benefit in 

Medicaid, and whether to provide services in community settings through 

HCBS waivers. States may apply to the Centers for Medicare & Medicaid 

Services (CMS) for waivers under section 1915(c) of the Social Security 

Act to provide HCBS services as an alternative to institutional care in 

ICF/MRs and waive certain Medicaid requirements that would otherwise 

apply, such as statewideness, which requires that services be available 

throughout the state, and comparability, which requires that all services be 

available to all eligible individuals.15 For both the ICF/MR and waiver 

12See M.C. Rizzolo et al., University of Colorado Department of Psychiatry and Coleman 

Institute for Cognitive Disabilities, The State of the States in Developmental Disabilities: 

2003 Study Summary (preliminary data) (Boulder, Colo.: University of Colorado, in 

press). 

13ICF/MRs include both large institutions and smaller residential settings. Smaller ICF/MRs, 

in the form of community group homes, may have as few as four residents. Regardless of 

size, all ICF/MRs are required to follow similar rules regarding the provision of care and 

oversight of quality. 

14These numbers do not add to the total of Medicaid long-term care spending on individuals 

with developmental disabilities cited above because of rounding. 

1542 U.S.C. § 1396n(c)(2000). 

Page 8 GAO-03-1044 Protection and Advocacy Agencies 
programs, protecting the health and welfare of Medicaid-covered 

individuals receiving services is a shared federal-state responsibility. 

Under the ICF/MR optional benefit program, states annually inspect 

institutions to ensure that they meet federal quality standards. Under 

Medicaid waivers, states must include assurances to CMS that necessary 

safeguards are in place to protect beneficiaries. 

In pursuing legal remedies on behalf of individuals with developmental 

disabilities, P&As have represented individuals as well as groups or 

classes of individuals in lawsuits. All such lawsuits are subject to rules of 

procedure that govern proceedings in the relevant court. Many of these 

cases take place in federal court, where the Federal Rules of Civil 

Procedure (FRCP) apply. FRCP Rule 23 establishes procedural 

requirements for class action lawsuits in federal district court, including 

the circumstances under which individuals must be notified of their 

inclusion in a class prior to class formation, referred to as certification by 

the court, and notified of proposed settlements of lawsuits on their behalf. 

The requirements vary depending upon whether the suit is for injunctive 

relief or monetary damages. Lawsuits for injunctive relief seek a court 

order requiring another party to do or refrain from doing a specified act. 

For suits seeking injunctive relief, the type of class action suit P&As 

generally bring, the rule does not require notification of individuals’ 

inclusion in a class prior to class formation.16 The rule does, however, 

require notification of class members at the time of proposed settlement. 

By contrast, for class action suits seeking monetary relief, the rule requires 

that individuals be notified of their inclusion in a class prior to its 

formation. 

16A 2001 proposed revision to the FRCP Rule 23 that would have required notice to all 

potential class members in lawsuits for injunctive relief resulted in comments from many 

civil rights groups indicating that mandatory notice could impair many class actions. 

Memorandum to the Honorable Anthony J. Scirica, Chair, Standing Committee on Rules of 

Practice and Procedure, from Honorable David F. Levi, Chair, Advisory Committee on the 

Federal Rules of Civil Procedure, dated May 20, 2002, Re: Report of the Civil Rules 

Advisory Committee. The proposal was not adopted. 

Page 9 GAO-03-1044 Protection and Advocacy Agencies 
Lawsuits Related to 

Deinstitutionalization 

Are a Small Part of 

P&A Activities 

Nationwide and for the three states reviewed, lawsuits related to 

deinstitutionalization on behalf of individuals with developmental 

disabilities constitute a small part of overall P&A activities. We identified 

24 lawsuits nationwide that P&As filed, joined, or intervened in related to 

deinstitutionalization from 1975 through 2002. P&As filed or intervened in 

six of these suits in the three states we examined—California, Maryland, 

and Pennsylvania—during this same period. Three of the six suits were 

settled as class actions. The three other suits were intended but not settled 

as class action lawsuits. P&As in these three states reported that they used 

litigation of all types, including litigation related to deinstitutionalization, 

in 1.5 percent of client problems they addressed from fiscal years 1999 

through 2001. 

P&As Filed, Joined, or 

Intervened in Few 

Lawsuits Relating to 

Deinstitutionalization 

National data sources indicate that, from 1975 through 2002, P&As filed, 

joined, or intervened in approximately 24 lawsuits related to 

deinstitutionalization on behalf of individuals with developmental 

disabilities. (See app. II.) Most but not all of these lawsuits were intended 

to be class actions against large public institutions for persons with mental 

retardation and other developmental disabilities. Moreover, P&As reported 

that, relative to other activities, they spent a small proportion of staff time 

on filing class action lawsuits on behalf of individuals with developmental 

disabilities. Nationally, P&As reported spending about 2 percent of their 

staff time for this purpose in 2001.17 

From 1975 through 2002, P&As in the three states we reviewed filed or 

intervened in six lawsuits related to deinstitutionalization on behalf of 

individuals with developmental disabilities. (See table 1.) Of the six 

lawsuits, four were brought in federal court and two were brought in state 

court. Three of these suits were settled as class action lawsuits. The other 

three suits were intended as class actions but not certified as such by their 

respective courts. Of these three, one in Maryland was dismissed by 

mutual agreement of the parties, one in California was settled by a 

multiparty agreement, and another in California is pending. Although most 

of the suits were settled a number of years ago, the impact of the suits can 

be ongoing. For example, the Nelson v. Snider suit in Pennsylvania was 

17This information is from a national survey of 57 P&As in fiscal year 2001 in which 44 

provided information about staff time spent on filing class action lawsuits on behalf of 

individuals with developmental disabilities. See HHS OIG, State Protection and Advocacy 

Programs for Persons with Developmental Disabilities. 

Page 10 GAO-03-1044 Protection and Advocacy Agencies 
settled in 1994 but was part of the impetus for closing the Embreeville 

Center in 1998. 

Table 1: Lawsuits Related to Deinstitutionalization That P&As Filed or Intervened in on Behalf of Individuals with 

Developmental Disabilities in California, Maryland, and Pennsylvania, 1975–2002 

Federal/ Class certified Examples of actions 

Lawsuit state court Date filed P&A actions by court? Status of case required by settlement 

California 

Coffelt et al. v. State February 1990 Initiated lawsuit Yes. Class action 

California 

Department of 

Developmental 

Services et al. 

(various 

institutions and 

regional centers 

named among 

defendants)a 

seeking class 

action 

certification. 

settlement 

approved 

January 1994. 

Required state officials to 

reduce the number of 

individuals with 

developmental disabilities 

living in large state 

developmental centers by 

2,000 over 5 years and 

provide services to them 

in community-based 

settings, and engage in 

system improvement 

activities. 

Richard S. et al. 

v. California 

Department of 

Developmental b

Services et al. 

Federal March 1997 	 In a lawsuit 

initiated by 

plaintiffs 

seeking class 

action 

certification, 

P&A intervened 

to seek 

injunction 

against state 

policy allowing 

family members 

or guardians 

(referred to as 

conservators in 

California) to 

veto community 

placement 

decisions made 

by a member of 

the Individual 

Program Plan 

(IPP) team. 

No. 	Court issued 

permanent 

injunction in April 

2000. 

Multiparty 

settlement 

agreement 

approved in 

January 2001. 

Injunction overturned state 

policy permitting family 

member or guardian veto 

of community placement 

decisions for adult 

developmental center 

residents. 

Settlement instituted 

policy ensuring that when 

a member of the IPP team 

for the individual with 

developmental disabilities 

objects to community 

placement, a hearing may 

be requested in state court 

on the individual’s 

proposed community 

placement. 

Page 11 GAO-03-1044 Protection and Advocacy Agencies 
Federal/ Class certified 

Lawsuit state court Date filed P&A actions by court? 

Examples of actions 

Status of case required by settlement 

Capitol People 

First et al. v. 

California 

Department of 

Developmental 

Services et al. 

(various regional 

centers named 

among 

defendants) 

State January 2002 Initiated lawsuit No court Lawsuit is Not applicable. 

seeking class decision as of ongoing. 

action August 4, 2003. 

certification.c 

Maryland 

Hunt et al. v. Federal September 1991 Initiated lawsuit No. Lawsuit Not applicable.d 

Meszaros et al. seeking class dismissed by 

(state-operated action mutual 

institution certification. agreement 

named is Great March 1999. 

Oaks Center) 

Pennsylvania 

Richard C. et al. Federal September 1989 Initiated lawsuit Yes. Class action 

v. Snider et al. 

(state-operated 

institution 

named is 

Western 

Center)e 

seeking class 

action 

certification. 

settlement 

approved 

June 1993. 

Defined activities for state 

officials in planning and 

implementing phased 

community placement and 

establishing a quality 

assurance program. 

Nelson et al. v. Federal January 1994 Initiated lawsuit Yes. Class action Phased community 

Snider et al. seeking class settlement placement and closure of 

(state-operated action approved the Embreevillle Center by 

institution certification. November 1994. September 30, 1997.f 

named is Defined state activities for 

Embreeville planning and 

Center)e implementing a quality 

assurance program. 

Sources: California, Maryland, and Pennsylvania P&As and settlement agreements for the lawsuits. 

a

Regional centers named in lawsuit include San Andreas, Golden Gate, East Bay, and North Bay. 

b

The P&A intervened in a multiparty suit that included individual plaintiffs from Fairview 

Developmental Center. Both the permanent injunction and the settlement agreement as approved by 

the court apply statewide to institutions for developmentally disabled individuals. 

c

Complaint proposes a class of “all Californians with developmental disabilities ... who are or will be 

institutionalized, and those who are or will be at risk of being institutionalized, in either public or 

private facilities including, but not limited to, the Developmental Centers (DCs), Skilled Nursing 

Facilities (SNFs), Intermediate Care Facilities — Developmentally Disabled (ICF-DDs), large 

congregate Community Care Facilities (CCFs), psychiatric hospitals, or children’s shelters.” 

d

Although not required as a result of the lawsuit, the Great Oaks Center closed in June 1996. 

e

The Pennsylvania P&A contracted with the Disabilities Law Project in Philadelphia, Pennsylvania, to 

file this suit. 

f

The center closed in 1998. 

Page 12 GAO-03-1044 Protection and Advocacy Agencies 
P&As in Three States 

Used Litigation to 

Address a Small 

Percentage of Client 

Problems 

Complaints brought in these lawsuits included allegations of inappropriate 

care and treatment in state institutions, including abuse and neglect, and 

violations of constitutional due process rights as well as rights under the 

Rehabilitation Act of 1973 and the Americans with Disabilities Act. The 

three class action suits resulted in court-ordered settlements requiring 

state officials to take a variety of actions, including placing of individuals 

with developmental disabilities in community settings, downsizing or 

closing of state institutions, and establishing and overseeing of certain 

quality assurance standards. 

P&As in California, Maryland, and Pennsylvania used litigation 

infrequently to address client problems according to available data from 

fiscal years 1999 to 2001. In their annual reports to ADD, P&As in these 

states reported using litigation to address 272 client problems over the 3-

year period, or about 1.5 percent of all problems addressed. (See table 2.) 

This included litigation on behalf of named plaintiffs in 

deinstitutionalization litigation, such as class action lawsuits, and other 

litigation, such as litigation filed on behalf of individuals. By contrast, 

P&As reported using other services to address 17,947 client problems, 

more than 98 percent of all problems addressed. These services include 

contacting state officials for individuals in need of services such as health 

care, negotiation and mediation help, technical assistance in selfadvocacy, and representation at administrative hearings. 

Page 13 GAO-03-1044 Protection and Advocacy Agencies 
Table 2: P&A Services Used to Address Problems of Individuals with Developmental Disabilities in California, Maryland, and 

Pennsylvania, Fiscal Years 1999–2001 

Percentage 

Assistance Assistance of total client 

provided through provided through problems Percentage of total 

litigation (number other servicesa addressed client problems 

of client (number of client through addressed through 

problems) problems) Total litigation other services 

California Protection & 

Advocacy, Inc. 

2001 16b 1,002 1,018 1.6 

2000 9 3,281 3,290 0.3 

1999 28 4,586 4,614 0.6 

Pennsylvania Protection and 

Advocacy, Inc. 

2001 65 2,451 2,516 2.6 

2000 89 2,672 2,761 3.2 

1999 39 3,661 3,700 1.1 

Maryland Disability Law Center 

(Maryland P&A) 

2001 0 178 178 0 100.0 

2000 11 68 79 13.9 

1999 15 48 63 23.8 

Total 272 17,947 18,219 1.5 

Source: ADD. 

Note: GAO analysis of ADD data. Percentages may not add to 100 because of rounding. Client 

assistance data are calculated on the basis of the number of client problems reported by individuals 

that are addressed and closed each year. These data do not include individuals who are being 

assisted but whose problems are not yet addressed and closed—that is, they do not include active 

cases. 

a

Other services include short-term assistance to obtain needed services, technical assistance in selfadvocacy, mediation/negotiation, and administrative hearings. 

b

Includes two of the named plaintiffs in the Coffelt lawsuit but does not include unnamed class 

members. 

Page 14 GAO-03-1044 Protection and Advocacy Agencies 

98.4 

99.7 

99.4 

97.4 

96.8 

98.9 

86.1 

76.2 

98.5 
P&As’ 

Communications in 

Three States Were 

Consistent with 

Federal Rules but Not 

as Comprehensive as 

Some Parents Desired 

P&As in the three states communicated with parents and guardians as 

required by federal rules in the lawsuits we reviewed. In the three cases 

settled as class actions, P&As provided notice to all class members at the 

time settlement was proposed to the court, as required by federal rules. 

Such notice was not required in the other three cases we reviewed, which 

were not class actions. Even though P&As provided the notice required by 

federal rules in the lawsuits we examined, representatives of some parent 

groups told us they believed that P&As should have communicated with 

parents and guardians before filing or intervening in these lawsuits and 

prior to class certification by the court. P&As in the three states reviewed 

indicated that they did not try to communicate with all individuals 

potentially affected by the six lawsuits, including parents and guardians, 

but did communicate with organizations representing some parents and 

guardians during these stages of the lawsuits. However, even if P&As had 

provided notification during the stages specified by the parents and 

guardians, under the applicable federal rule of civil procedure an 

individual has no explicit right to opt out of a class in this type of case. 

P&As Complied with 

Requirement to Provide 

Notice to All Class 

Members Prior to a Court’s 

Approval of a Settlement 

Agreement 

In the three class action lawsuits we reviewed, P&As complied with FRCP 

Rule 23, which requires communication with all class members prior to 

settlement. Two of these lawsuits were filed and settled in federal district 

court, where the FRCP applied directly, and one lawsuit was filed and 

settled in California superior court, where, under prevailing law at that 

time, the judge applied the FRCP. 

FRCP Rule 23 does not require notification of class members prior to class 

certification in lawsuits seeking injunctive relief, the type of lawsuits 

generally brought by P&As, although such notice is required in class action 

lawsuits seeking monetary damages. However, FRCP Rule 23 does require 

notification at the time of proposed settlement for all class action 

lawsuits—including those seeking injunctive relief. It specifies that such 

notice “shall be given to all members of the class in such manner as the 

court directs.”18 This notice guarantees that unnamed class members will 

receive notice of any proposed settlement and have an opportunity to 

18FRCP Rule 23(e). Federal judicial guidance for providing such notice provides that, 

among other things, it should describe the essential terms of the proposed settlement; 

disclose any special benefits provided to the named class representatives; provide 

information regarding attorney’s fees; and indicate the time and place of the hearing to 

consider approval of the settlement and the method for objecting to the settlement. Federal 

Judicial Center, Manual for Complex Litigation, § 30.212 (Third Ed., West 1995). 

Page 15 GAO-03-1044 Protection and Advocacy Agencies 
register objections with the court, thereby assisting the court in 

determining whether the proposed settlement is fair, adequate, and 

reasonable.19 We confirmed that such notice was provided in each of the 

three cases. Such notice was not required in the other three cases we 

reviewed, which were not class action lawsuits. 

P&As’ Communication 

Was Not as Comprehensive 

as Some Parents Desired 

P&As’ communication before a settlement was proposed to the court was 

not as comprehensive as some parents desired in the lawsuits we 

reviewed. Representatives of some parent groups told us they were not 

satisfied with the extent of P&A communication because they believed 

that P&As should have communicated with parents and guardians in the 

six lawsuits we examined before filing or intervening in the suits and prior 

to class certification by the court. P&A officials in California, Maryland, 

and Pennsylvania told us that they did not try to communicate with all 

individuals, including parents and guardians, potentially affected by the six 

lawsuits until a settlement was proposed to the court. However, P&As 

were not required to provide such communication. In a discussion with 

NAPAS, the national organization representing P&As, an official told us 

that for P&As to attempt to contact all such individuals would require 

considerable time and expense, which would make providing such notice 

extremely difficult. Furthermore, he said that P&As would not generally 

wish to provide such notice unless required to do so because this could 

provide defendants with information they might use to oppose litigation. 

Nevertheless, P&A officials said that they met or attempted to meet with 

organizations representing some parents and guardians of affected 

individuals during the lawsuits.20 The context of the meetings varied with 

the circumstances of the six lawsuits. For example, a California P&A 

official indicated that, both before and after filing the Coffelt lawsuit in 

1990, the P&A met with organizations representing the parents and 

guardians of residents of at least three of the institutions affected. In the 

other two California lawsuits, Richard S. (1997) and Capitol People First 

(2002), a California P&A official indicated that the P&A met with and 

represented organizations whose members included the families of 

institutional residents, and met with individual family members before and 

19James Moore and Kevin Shirey, Moore’s Federal Rules Pamphlet, Part 1, § 23.14 Matthew 

Bender, 2003. 

20We did not determine the number of P&A meetings with family members and guardians or 

the number of attendees for any of these lawsuits. 

Page 16 GAO-03-1044 Protection and Advocacy Agencies 
during the litigation. The P&A did not, however, meet with parent 

organizations specifically associated with the institutions. In both of those 

lawsuits, the organizations specifically associated with the institutions 

were or are involved as parties, thus complicating direct communication 

between the P&A and parents and guardians who might belong to these 

organizations.

21 A Maryland P&A official told us that, before filing the Hunt 

v. Meszaros litigation in 1991, the P&A met with an organization 

representing parents and guardians of residents of the affected facility— 

the Great Oaks Center. A Pennsylvania P&A official told us that the P&A 

met with a parent group representing Embreeville Center residents during 

the Nelson v. Snider litigation (1994)—both before filing the lawsuit and 

after the court’s certification of a class action. These efforts were 

complicated by the fact that this organization had already filed another 

lawsuit against the state.22 A Pennsylvania P&A official said that the P&A 

tried unsuccessfully to meet with an organization representing parents and 

guardians of Western Center residents prior to filing the Richard C. v. 

Snider lawsuit (1989) and that such efforts were complicated by another 

lawsuit filed against the P&A by that organization. Representatives of 

some parent groups, however, told us that P&A communication 

concerning the lawsuits with parents and guardians of affected individuals 

was limited. 

Three of the six lawsuits we examined—Nelson v. Snider, Richard. C. v. 

Snider, and Coffelt v. California Department of Developmental 

Services—were certified by the courts as class actions. The P&As 

indicated that they did not attempt to notify all prospective class members 

prior to certification of their classes by the court for the reasons discussed 

above. P&As told us they maintained regular contact with all named 

plaintiffs in the lawsuits. Representatives of some parent groups said that 

parents and guardians of individuals affected as unnamed class members 

in the lawsuits had insufficient opportunity to express their views about 

the inclusion of their adult children in the class and were not notified that 

their children might be included until the settlement was proposed to the 

court. As a result, some individuals may have been included in class 

21Generally, counsel will avoid direct communication with parties to a lawsuit represented 

by others. See ABA Model Code of Professional Responsibility, Canons 7 and 9, DR 7-104 

(1980). 

22This case was eventually consolidated with the P&A’s own case on behalf of residents of 

the Embreeville Center and resulted in the settlement agreement discussed in this report. 

See 160 F.R.D. 46 (E.D. Pa. 1994). 

Page 17 GAO-03-1044 Protection and Advocacy Agencies 
P&As in the Three 

States Assumed 

Various Roles in 

Monitoring 

Individuals 

Transferred to 

Community Settings 

actions even though they or their parents or guardians opposed their 

inclusion. As a matter of law, however, these individuals would have had 

limited influence even if they had been able to express their views. In class 

action suits seeking injunctive relief, such as the three we examined, the 

court focuses on the circumstances of the class as a whole as opposed to 

those affecting individual members.23 In such suits, under the rules 

governing such litigation, an individual has no explicit right to opt out of a 

class as certified by the court. By contrast, there is an explicit right to opt 

out of a class in class action lawsuits that seek monetary compensation.24 

P&As assumed various roles in monitoring the health and well-being of 

individuals with developmental disabilities transferred from institutions to 

community settings in four of five lawsuits we reviewed in California, 

Maryland, and Pennsylvania that had been resolved. (See table 3.) No P&A 

monitoring role has been established in the sixth suit we reviewed, in 

which litigation is ongoing. In these three states, P&A roles and 

responsibilities varied with the circumstances of the lawsuits and 

initiatives P&As undertook as part of their general role to protect and 

advocate the rights of individuals with developmental disabilities. State 

developmental disabilities services agencies, however, continue to have 

the primary responsibility for ensuring the health and well-being of 

individuals, including monitoring these individuals when they receive 

services in the community. Representatives of some parent groups told us 

that parents and guardians have been dissatisfied with the adequacy of 

P&As’ monitoring role in community placements, while representatives of 

other parent groups told us they generally supported the P&A monitoring 

role. 

With respect to the three lawsuits filed and settled as class actions, the 

settlement agreements did not specify a monitoring role for the P&As, but 

the P&As assumed specific roles in monitoring individuals transferred to 

the community. Regarding the other three lawsuits not settled as class 

actions, the P&A also undertook a role in monitoring affected individuals 

23To maintain a class action for injunctive relief, one must establish that (1) the party 

opposing the class has acted or refused to act on grounds generally applicable to the class 

and (2) final injunctive or corresponding declaratory relief is appropriate with respect to 

the class as a whole. See, e.g., Carl Aron et al., Class Actions Law and Practice, § 1:05 (1991 

ed. Callaghan) (citing Rule 23(b)(2) of the Federal Rules of Civil Procedure). 

24See Aron at § 3:12; Steven T.O. Cottreau, Note: The Due Process Rights to Opt Out of 

Class Actions, 73 N.Y.U. L. Rev. 480, 483 (1998). 

Page 18 GAO-03-1044 Protection and Advocacy Agencies 
in one of these suits. P&As are not playing a monitoring role in the other 

two suits—in one because of the nature of the suit, and in the other 

because litigation is ongoing. 

Table 3: Roles P&As Assumed in Monitoring Individuals Affected by Lawsuits Reviewed in California, Maryland, and 

Pennsylvania 

Lawsuit (status) Examples of P&A monitoring roles 

California 

Coffelt et al. v. California Department of The P&A assumed the role of monitoring class members transferred to community 

Developmental Services et al.a

 (settled 1994)	 settings using information the state was required to develop as part of this 

settlement agreement (e.g., annual reports about various aspects of the well-being 

of individuals and consumer and family satisfaction with the quality of life in 

community settings, and quarterly reports about client placement in community 

settings, crisis intervention and emergency services).b

 As of June 2002, the 

number of persons with developmental disabilities moved to community settings as 

a result of the settlement exceeded 2,200 persons. 

The P&A’s responsibilities for monitoring the lawsuit’s 11 named plaintiffs included 

communication with these individuals, who needed a variety of services, such as 

behavior intervention, medical services, and assistance in crises. 

Richard S. et al. v. California Department of The P&A did not undertake a monitoring role as a result of this lawsuit. 

Developmental Services et al. (settled 2001) 

Capitol People First et al. v. California No role; this lawsuit is ongoing. 


Department of Developmental Services et al. 


(ongoing) 


Maryland 

Hunt et al. v. Meszaros et al. Although this lawsuit was dismissed, the P&A undertook a role with the Arc of 

(Great Oaks Center; dismissed 1999) 	 Maryland to provide affected families with information about community placement 

processes. In addition, P&A officials told us that the P&A assumed responsibility 

for monitoring some former Great Oaks Center residents identified as having 

problems, based on P&A reviews of complaints and provider incident reports. 

When this lawsuit was filed in 1991, 205 individuals resided at this center, 

according to the Maryland P&A. 

Pennsylvania 

a

Richard C. et al. v. Snider et al. 

(Western Center; settled 1993) 

The P&A assumed the role of monitoring each class member. This role included 

conducting site visits to community facilities, reviewing records to determine 

whether class members were receiving services consistent with their “personcentered” discharge plans, interviewing residents and provider staff, following up 

on noncompliance issues, and participating in the Western Center Human Rights 

and Behavior Management Review Committees. 

A P&A official told us the P&A role included face-to-face interaction with individuals 

while they were at the Western Center and after they were placed in the 

community. 

The court certified the class of 384 individuals in February 1992, including 

approximately 360 who resided at the Western Center, according to a P&A official. 

Page 19 GAO-03-1044 Protection and Advocacy Agencies 
Lawsuit (status) Examples of P&A monitoring roles 

a

Nelson et al. v. Snider et al. 

(Embreeville Center; settled 1994) 

The P&A assumed the role of monitoring 50 class members who had no family 

members to assist them. Monitoring responsibilities for these individuals prior to 

their discharge from the center included reviewing plans of care and examining 

community facilities. After community placements, the P&A role encompassed 

visiting homes and day programs, and attending treatment meetings for up to 1 

year. A P&A official also reported the role of monitoring 15 to 20 class members 

who had problems with community placements by contacting the appropriate entity 

such as the provider, the county, court monitor, and/or the state developmental 

services agency. Examples of problems in community settings included absence of 

adaptive equipment or day activities, inadequate staffing, inadequate dental 

service, and failure to properly implement behavior management plans. 

P&A monitoring responsibilities for the lawsuit’s six named plaintiffs included 

conducting site visits and reviewing case managers’ reports.c 

There were 260 individuals with developmental disabilities living in the Embreeville 

Center when the court certified the class in April 1992, according to a P&A official. 

Sources: California, Maryland, and Pennsylvania P&As, state developmental disabilities services agencies, and settlement agreements for the six lawsuits. 

Note: GAO analyzed settlement agreements and information related to the lawsuits provided by P&As 

and state developmental disabilities services agency officials. 

a

Settled as a class action lawsuit. 

b

The Coffelt settlement agreement required that the state contract with an independent expert to 

prepare an annual report that contains certain quality dimensions, including general health and 

safety, behavioral support services, psychoactive medication usage, quality of home and work 

settings, independence, productivity, social integration, and opportunity for choice and control. This 

requirement became part of section 4418.1 of the California Welfare and Institutions Code. A 

California P&A official stated that the expert’s assessment is based on visits to persons who moved 

as a result of the settlement, interviews with these persons, and records review. 

c

Case managers are responsible for assessing individuals’ needs, developing a plan of care, 

arranging for delivery of services, monitoring individuals, and periodically reassessing individuals’ 

needs to modify the care plan as appropriate. 

For the three lawsuits settled as class actions—Coffelt (California), 

Richard C. (Pennsylvania), and Nelson (Pennsylvania)—the P&As 

assumed the role of monitoring some or all class members transferred to 

community settings. As a result of the Coffelt settlement in 1994, the 

California P&A has undertaken the role of monitoring individuals using 

information that the state was required to provide, such as annual reports 

about quality of life in community settings, based on consumer and family 

surveys. P&A monitoring responsibilities for Coffelt’s 11 named plaintiffs 

involved regular communication with these individuals. For Richard C., a 

Pennsylvania P&A official told us that the P&A role included hiring an 

advocate to monitor services25 provided to all class members while they 

25The Pennsylvania developmental disabilities services agency reimbursed the P&A for this 

advocate’s services. 

Page 20 GAO-03-1044 Protection and Advocacy Agencies 
were still living at the Western Center and after their placement in 

community settings. This advocate was expected to visit each class 

member discharged from the Western Center after 1994 at least once. A 

P&A official said that monitoring included face-to-face interaction with 

class members living at the Western Center or in the community. The P&A 

has ongoing responsibility for monitoring several individuals who were 

moved from the Western Center to the Ebensburg Center, another state 

facility for individuals with mental retardation. For the Nelson lawsuit 

settled in 1994, the P&A undertook the responsibility to follow 50 class 

members who did not have involved family members, in addition to 

monitoring six named plaintiffs. P&As have assumed a role in monitoring 

state development and implementation of quality assurance mechanisms 

established by all three settlement agreements to improve services 

provided in community settings and evaluate services delivered in the 

community. Thus, these agreements have long-lasting implications for 

state and P&A monitoring activities because implementation of the 

settlement agreements may take years to complete. 

Of the three other lawsuits we reviewed, one was settled, one was 

dismissed, and the third is ongoing litigation. In the settled suit, Richard S. 

(California), the P&A did not undertake a monitoring role as a result of 

this lawsuit. In this suit, the P&A intervention was intended to overturn 

California state policy permitting family member or guardian veto of 

community placement decisions, an outcome that did not lead to a P&A 

role in monitoring individuals affected by this suit. However, California 

P&A officials reported that the P&A had the role of monitoring the wellbeing of all individuals who moved from institutions to the community, 

including individuals affected by the Richard S. suit, based on the role 

assumed by the P&A in the Coffelt case. In the dismissed suit Hunt 

(Maryland), the P&A undertook a certain role to monitor plaintiffs and 

other affected individuals. The Hunt lawsuit was dismissed in 1999 

following closure of the Great Oaks Center in 1996. However, the P&A and 

Arc of Maryland officials reported having a role in assisting families of 

individuals who had problems with community placements. Finally, 

California’s Capitol People First (filed in 2002) is in the early stages of 

litigation and has not yet addressed a P&A monitoring role. 

Page 21 GAO-03-1044 Protection and Advocacy Agencies 
Parent groups we interviewed had differing views about the role P&As 

played in monitoring individuals in the five resolved lawsuits we reviewed. 

Representatives of some parent groups were generally dissatisfied with 

the adequacy of P&As’ efforts to monitor the health and well-being of 

individuals transferred to community settings, while representatives of 

other parent groups, who were generally in favor of these lawsuits, 

supported P&As’ monitoring approaches. Those parent groups that were 

dissatisfied said that in supporting states’ “rapid” deinstitutionalization 

efforts, P&As disregarded parents’ concerns about service quality 

deficiencies in community settings and the needs of individuals with 

severe developmental disabilities, who tend to be medically fragile.26 They 

also stated that P&A staff did not adequately monitor individuals who 

were moved to community settings. In contrast, representatives of other 

parent groups generally supported the P&A role in monitoring community 

placements. For example, a representative of one parent group said that 

the Maryland P&A collaborated with this group in developing a family 

guide to community programs for people affected by the Hunt lawsuit. 

Other parent groups said the Pennsylvania P&A was instrumental in 

establishing consumer and family satisfaction teams to monitor the quality 

of services provided to individuals and families affected by the Nelson 

lawsuit. 

We provided a draft of this report to ACF and to the California, Maryland, 

and Pennsylvania P&As for their review. ACF said it was a thorough 

analysis of the three P&As’ involvement in deinstitutionaliation lawsuits 

for the population examined. ACF’s written comments are in appendix III. 

The three P&As stated that the report is accurate, and provided technical 

comments. We incorporated technical comments as appropriate. 

26We recently reported on the need to improve federal and state quality assurance systems 

for home and community-based Medicaid long-term care services for the elderly. See U.S. 

General Accounting Office, Long-Term Care: Federal Oversight of Growing Medicaid 

Home and Community-Based Waivers Should Be Strengthened, GAO-03-576 (Washington, 

D.C.: June 20, 2003). 

Agency and Other 

Comments 

Page 22 GAO-03-1044 Protection and Advocacy Agencies 
As agreed with your office, unless you publicly announce its contents 


earlier, we plan no further distribution of this report until 30 days after its 


issue date. At that time, we will send copies to the Assistant Secretary for 


Children and Families and the Commissioner of the Administration on 


Developmental Disabilities in the Department of Health and Human 


Services, interested congressional committees, and other parties. We will 


also make copies available to others on request. In addition, the report will 


be available at no charge on the GAO Web site at http://www.gao.gov. If 


you or your staff have any questions about this report, please call me at 


(202) 512-7118. Another contact and key contributors are listed in 


appendix IV.


Sincerely yours, 


Kathryn G. Allen 


Director, Health Care—Medicaid 


and Private Health Insurance Issues 


Page 23 GAO-03-1044 Protection and Advocacy Agencies 
Appendix I: Objectives, Scope, and 

Methodology 

We examined (1) the extent to which Protection and Advocacy agencies 

(P&As) engage in litigation related to deinstitutionalization on behalf of 

individuals with developmental disabilities, (2) how P&As have 

communicated with parents and legal guardians in deinstitutionalization 

lawsuits, and (3) the role, if any, that P&As have played in monitoring the 

health and well-being of individuals transferred from institutions to 

community settings within the context of these lawsuits. 

To determine the extent to which P&As engage in litigation related to 

deinstitionalization on behalf of individuals with developmental 

disabilities, we compared data from several sources and consulted with 

national and state organizations because there is no single, national source 

of information on P&A litigation activities. We analyzed information from 

two key studies that provide extensive information on 

deinstitutionalization lawsuits,1

 interviewed the authors of these studies, 

and examined information on lawsuits provided by the National 

Association of Protection & Advocacy Systems, Inc. (NAPAS) and Voice of 

the Retarded (VOR). We also interviewed officials from the Administration 

on Developmental Disabilities (ADD) in the Administration for Children 

and Families in the Department of Health and Human Services (HHS), 

NAPAS, the National Association of State Directors of Developmental 

Disabilities Services, and the VOR; representatives of several other family 

advocacy organizations, including the Arc of the United States; and P&A 

officials in the three states. From these sources, we compiled a national 

list of 24 deinstitutionalization lawsuits confirmed by NAPAS or state 

P&As that P&As filed, joined, or intervened in on behalf of individuals with 

developmental disabilities from 1975 through 2002. (See app. II for a list of 

all 24 cases identified.) From the national list we identified six lawsuits in 

three states—California, Maryland, and Pennsylvania—to study in more 

detail. National organizations that we consulted indicated that these states’ 

P&As are more active in deinstitutionalization litigation. In addition, we 

analyzed research on national trends in litigation for institutionalized 

individuals with developmental disabilities, consulted individuals 

knowledgeable about P&A deinstitutionalization lawsuits, and examined 

1

See Mary F. Hayden, “Civil Rights Litigation for Institutionalized Persons with Mental 

Retardation: A Summary,” Mental Retardation (February 1998) and Gary A. Smith, Status 

Report: Litigation Concerning Medicaid Services for Persons with Developmental and 

Other Disabilities (Tualatin, Ore.: Human Services Research Institute, Jan. 16, 2003). 

Page 24 GAO-03-1044 Protection and Advocacy Agencies 
Appendix I: Objectives, Scope, and 

Methodology 

aggregate and state-specific ADD data from 1999 through 2001 on P&A 

litigation services provided to this population.2 

To determine how P&As communicated with parents and legal guardians 

of individuals with developmental disabilities in deinstitutionalization 

lawsuits, we focused on the six lawsuits in California, Maryland, and 

Pennsylvania. We reviewed class action notification requirements for 

plaintiffs in federal and state courts and analyzed settlement agreements 

and other documents related to the six lawsuits. We also discussed the 

extent of P&A communication with individuals potentially affected by 

class action litigation with P&A officials and parent representatives in 

these states. 

Finally, to determine the role P&As play in monitoring individuals who 

have been moved from institutions to community settings, we reviewed 

the authority P&As have under the Developmental Disabilities Assistance 

and Bill of Rights Act of 2000 to protect and advocate the rights of 

individuals with developmental disabilities. We interviewed P&A officials 

in the three states about their roles and responsibilities and reviewed 

applicable deinstitutionalization settlement agreements and related 

documentation that they provided. We also interviewed officials from 

these states’ developmental disabilities services agencies who have 

primary responsibility for ensuring the quality of services provided to 

individuals with developmental disabilities.3

 We did not attempt to assess 

the effectiveness of P&A and state agencies’ quality monitoring efforts nor 

to generalize our study findings to P&As nationwide. We did our work 

from October 2002 through September 2003 in accordance with generally 

accepted government auditing standards. 

2

ADD does not tabulate the number of client case problems addressed through class action 

litigation separately from other types of litigation services. Nonlitigation services ADD 

tracks include activities such as mediation, technical assistance, and administrative 

hearings. 

3

The state agencies with these responsibilities are the California Department of 

Developmental Services, Maryland Developmental Disabilities Administration, and 

Pennsylvania’s Department of Public Welfare, Office of Mental Retardation. 

Page 25 GAO-03-1044 Protection and Advocacy Agencies 
Appendix II: P&A Lawsuits Related to 

Deinstitutionalization for Individuals with 

Developmental Disabilities, 1975–2002 

Case name Year filed State 

Evans v. Washingtona 1976 District of Columbia 

Garrity v. Gallen 1978 New Hampshire 

Baldridge v. Clintona 1983 Arkansas 

Leisz v. Kavanagh 1985 Texas 

Conner v. Branstad 1986 Iowa 

Nicoletti v. Browna 1987 Ohio 

Jackson v. Fort Stanton 1987 New Mexico 

Kope v. Watkins 1988 Michigan 

Parrent v. Angus 1989 Utah 

Martin v. Voinovich 1989 Ohio 

Richard C. et al. v. Snider et al.b 1989 Pennsylvania 

John S. v. Cuomo 1990 New York 

Weston v. Wyoming State Training School 1990 Wyoming 

Connecticut Traumatic Brain Injury Association v. Hogan 1990 Connecticut 

Hunt et al. v. Meszaros et al.b 1991 Maryland 

Coffelt et al v. California Department of Developmental Services et al.b 1990 California 

Nelson et al. v. Snider et al.b 1994 Pennsylvania 

Travis D. et al. v. Eastmont Human Services Center 1996 Montana 

People First of Washington v. Rainier Residential Habilitation Center 1996 Washington 

Richard S. et al. v. California Department of Developmental Services et al.a, b 1997 California 

Brown et al. v. Bush et al. 1998 Florida 

Capitol People First et al. v. California Department of Developmental Services et al.b 2002 California 

The Arc of Delaware et al. v. Meconi et al. 2002 Delaware 

McCarthy et al. v. Gilbert et al. 2002 Texas 

Sources: NAPAS; VOR; P&A officials; Mary F. Hayden, “Civil Rights Litigation for Institutionalized Persons with Mental Retardation: A Summary,” Mental Retardation (February 1998); and Gary A. Smith, 

Status Report: Litigation Concerning Medicaid Services for Persons with Developmental and Other Disabilities (Tualatin, Ore.: Human Services Research Institute, Jan. 16, 2003). 

Note: GAO compiled information on the cases in which P&As filed, intervened, or joined from these 

sources. GAO did not include Michigan Arc v. Smith (1978) because even though the P&A staff did 

legal work on the suit, the Arc filed the case rather than the P&A. 

a

P&A intervened. 

b

Reviewed by GAO. 

Page 26 GAO-03-1044 Protection and Advocacy Agencies 
Appendix III: Comments from the 

Administration for Children and Families 

Page 27 GAO-03-1044 Protection and Advocacy Agencies 
Appendix III: Comments from the 

Administration for Children and Families 

Page 28 GAO-03-1044 Protection and Advocacy Agencies 
Appendix IV: GAO Contact and Staff 

Acknowledgments 

GAO Contact James C. Musselwhite, (202) 512-7259 

Acknowledgments 	 In addition to the person named above, key contributors to this report 

were Anne Montgomery, Carmen Rivera-Lowitt, George Bogart, and 

Elizabeth T. Morrison. 

Page 29 GAO-03-1044 Protection and Advocacy Agencies 
Related GAO Products 


Long-Term Care: Federal Oversight of Growing Medicaid Home and 

Community-Based Waivers Should Be Strengthened. GAO-03-576. 

Washington, D.C.: June 20, 2003. 

Children with Disabilities: Medicaid Can Offer Important Benefits and 

Services. GAO/T-HEHS-00-152. Washington, D.C.: July 12, 2000. 

Mental Health: Improper Restraint or Seclusion Use Places People at 

Risk. GAO/HEHS-99-176. Washington, D.C.: September 7, 1999. 

Adults with Severe Disabilities: Federal and State Approaches for 

Personal Care and Other Services. GAO/HEHS-99-101. Washington, D.C.: 

May 14, 1999. 

Medicaid: Oversight of Institutions for the Mentally Retarded Should Be 

Strengthened. GAO/HEHS-96-131. Washington, D.C.: September 6, 1996. 

Medicaid: Waiver Program for Developmentally Disabled Is Promising 

but Poses Some Risks. GAO/HEHS-96-120. Washington, D.C.: July 22, 1996. 

(290240) Page 30 GAO-03-1044 Protection and Advocacy Agencies 
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