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entitled 'Protection and Advocacy Agencies: Involvement in 
Deinstitutionalization Lawsuits on Behalf of Individuals with 
Developmental Disabilities' which was released on October 30, 2003.

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Report to the Chairman, Subcommittee on Oversight and Investigations, 
Committee on Energy and Commerce, House of Representatives:

United States General Accounting Office:

GAO:

September 2003:

Protection and Advocacy Agencies:

Involvement in Deinstitutionalization Lawsuits on Behalf of Individuals 
with Developmental Disabilities:

Protection and Advocacy Agencies:

GAO-03-1044:

GAO Highlights:

Highlights of GAO-03-1044, a report to the Chairman, Subcommittee on 
Oversight and Investigations, Committee on Energy and Commerce, House 
of Representatives 

Why GAO Did This Study:

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.

What GAO Found:

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.


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.

[End of section]

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:

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:

GAO Contact:

Acknowledgments:

Related GAO Products:

Tables:

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:

Table 2: P&A Services Used to Address Problems of Individuals with 
Developmental Disabilities in California, Maryland, and Pennsylvania, 
Fiscal Years 1999-2001:

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

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:

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.[Footnote 1] In fiscal year 2002, the 57 Protection and 
Advocacy agencies (P&A) received $35 million in federal funding for 
this purpose.[Footnote 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 of certain aspects of court-approved 
settlements because of concerns they have regarding the care of their 
family members.[Footnote 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.[Footnote 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.[Footnote 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.[Footnote 6] 
The largest source of public funding for these institutional and 
community services is Medicaid, the federal-state program that 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 others[Footnote 7] 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 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.[Footnote 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 
procedure[Footnote 9] 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.):

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, 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 self-advocacy; 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 agencies. P&A staffing 
typically includes management, investigators, advocates, attorneys, 
and administrative staff.[Footnote 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.[Footnote 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 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.[Footnote 12] Medicaid spending was 
about $10.9 billion for ICF/MR residents including those living in 
large institutions;[Footnote 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.[Footnote 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.[Footnote 15] For both the ICF/MR and waiver 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.[Footnote 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.

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.[Footnote 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 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:

Lawsuit: California: 

Lawsuit: Coffelt et al. v. California Department of Developmental 
Services et al. (various institutions and regional centers named among 
defendants)[A]; Federal/ state court: State; Date filed: February 1990; 
P&A actions: Initiated lawsuit seeking class action certification; 
Class certified by court?: Yes; Status of case: Class action 
settlement approved January 1994; Examples of actions required by 
settlement: 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.

Lawsuit: Richard S. et al. v. California Department of Developmental 
Services et al.[B]; Federal/ state court: Federal; Date filed: March 
1997; P&A actions: 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; Class certified 
by court?: No; Status of case: Court issued permanent injunction in 
April 2000. Multiparty settlement agreement approved in January 2001; 
Examples of actions required by settlement: 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.

Lawsuit: Capitol People First et al. v. California Department of 
Developmental Services et al. (various regional centers named among 
defendants); Federal/ state court: State; Date filed: January 2002; P&A 
actions: Initiated lawsuit seeking class action certification.[C]; 
Class certified by court?: No court decision as of August 4, 2003; 
Status of case: Lawsuit is ongoing; Examples of actions required by 
settlement: Not applicable.

Lawsuit: Maryland: 

Lawsuit: Hunt et al. v. Meszaros et al. (state-operated institution 
named is Great Oaks Center); Federal/ state court: Federal; Date filed: 
September 1991; P&A actions: Initiated lawsuit seeking class action 
certification; Class certified by court?: No; Status of case: Lawsuit 
dismissed by mutual agreement March 1999; Examples of actions required 
by settlement: Not applicable.[D].

Lawsuit: Pennsylvania: 

Lawsuit: Richard C. et al. v. Snider et al. (state-operated institution 
named is Western Center)[E]; Federal/ state court: Federal; Date filed: 
September 1989; P&A actions: Initiated lawsuit seeking class action 
certification; Class certified by court?: Yes; Status of case: Class 
action settlement approved June 1993; Examples of actions required by 
settlement: Defined activities for state officials in planning and 
implementing phased community placement and establishing a quality 
assurance program.

Lawsuit: Nelson et al. v. Snider et al. (state-operated institution 
named is Embreeville Center)[E]; Federal/ state court: Federal; Date 
filed: January 1994; P&A actions: Initiated lawsuit seeking class 
action certification; Class certified by court?: Yes; Status of case: 
Class action settlement approved November 1994; Examples of actions 
required by settlement: Phased community placement and closure of the 
Embreevillle Center by September 30, 1997.[F[DEFINED STATE ACTIVITIES 
FOR] or planning and 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.

[End of table]

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 Three States Used Litigation to Address a Small Percentage of 
Client Problems:

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 self-advocacy, and representation at 
administrative hearings.

Table 2: P&A Services Used to Address Problems of Individuals with 
Developmental Disabilities in California, Maryland, and Pennsylvania, 
Fiscal Years 1999-2001:

California Protection & Advocacy, Inc: 

2001; Assistance provided through litigation (number of client 
problems): 16[B]; Assistance provided through other services[A] (number 
of client problems): 1,002; Total: 1,018; Percentage of total client 
problems addressed through litigation: 1.6; Percentage of total client 
problems addressed through other services: 98.4.

2000; Assistance provided through litigation (number of client 
problems): 9; Assistance provided through other services[A] (number of 
client problems): 3,281; Total: 3,290; Percentage of total client 
problems addressed through litigation: 0.3; Percentage of total client 
problems addressed through other services: 99.7.

1999; Assistance provided through litigation (number of client 
problems): 28; Assistance provided through other services[A] (number of 
client problems): 4,586; Total: 4,614; Percentage of total client 
problems addressed through litigation: 0.6; Percentage of total client 
problems addressed through other services: 99.4.

Pennsylvania Protection and Advocacy, Inc: 

2001; Assistance provided through litigation (number of client 
problems): 16[B]: 9: 28: Pennsylvania Protection and Advocacy, Inc.: 
65; Assistance provided through other services[A] (number of client 
problems): 2,451; Total: 2,516; Percentage of total client problems 
addressed through litigation: 2.6; Percentage of total client problems 
addressed through other services: 97.4.

2000; Assistance provided through litigation (number of client 
problems): 16[B]: 9: 28: Pennsylvania Protection and Advocacy, Inc.: 
89; Assistance provided through other services[A] (number of client 
problems): 2,672; Total: 2,761; Percentage of total client problems 
addressed through litigation: 3.2; Percentage of total client problems 
addressed through other services: 96.8.

1999; Assistance provided through litigation (number of client 
problems): 16[B]: 9: 28: Pennsylvania Protection and Advocacy, Inc.: 
39; Assistance provided through other services[A] (number of client 
problems): 3,661; Total: 3,700; Percentage of total client problems 
addressed through litigation: 1.1; Percentage of total client problems 
addressed through other services: 98.9.

Maryland Disability Law Center (Maryland P&A): 

2001; Assistance provided through litigation (number of client 
problems): 16[B]: 9: 28: Pennsylvania Protection and Advocacy, Inc.: 0; 
Assistance provided through other services[A] (number of client 
problems): 178; Total: 178; Percentage of total client problems 
addressed through litigation: 0; Percentage of total client problems 
addressed through other services: 100.0.

2000; Assistance provided through litigation (number of client 
problems): 16[B]: 9: 28: Pennsylvania Protection and Advocacy, Inc.: 
11; Assistance provided through other services[A] (number of client 
problems): 68; Total: 79; Percentage of total client problems addressed 
through litigation: 13.9; Percentage of total client problems addressed 
through other services: 86.1.

1999; Assistance provided through litigation (number of client 
problems): 16[B]: 9: 28: Pennsylvania Protection and Advocacy, Inc.: 
15; Assistance provided through other services[A] (number of client 
problems): 48; Total: 63; Percentage of total client problems addressed 
through litigation: 23.8; Percentage of total client problems addressed 
through other services: 76.2.

Total; Assistance provided through litigation (number of client 
problems): 16[B]: 9: 28: Pennsylvania Protection and Advocacy, Inc.: 
272; Assistance provided through other services[A] (number of client 
problems): 17,947; Total: 18,219; Percentage of total client problems 
addressed through litigation: 1.5; Percentage of total client problems 
addressed through other services: 98.5.

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 self-advocacy, mediation/
negotiation, and administrative hearings.

[B] Includes two of the named plaintiffs in the Coffelt lawsuit but 
does not include unnamed class members.

[End of table]

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."[Footnote 18] This notice 
guarantees that unnamed class members will receive notice of any 
proposed settlement and have an opportunity to register objections with 
the court, thereby assisting the court in determining whether the 
proposed settlement is fair, adequate, and reasonable.[Footnote 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.[Footnote 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 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.[Footnote 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.[Footnote 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 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.[Footnote 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.[Footnote 24]

P&As in the Three States Assumed Various Roles in Monitoring 
Individuals Transferred to Community Settings:

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 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): California: 

Lawsuit (status): Coffelt et al. v. California Department of 
Developmental Services et al.[A] (settled 1994); Examples of P&A 
monitoring roles: The P&A assumed the role of monitoring class members 
transferred to community 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.

Lawsuit (status): Richard S. et al. v. California Department of 
Developmental Services et al. (settled 2001); Examples of P&A 
monitoring roles: The P&A did not undertake a monitoring role as a 
result of this lawsuit.

Lawsuit (status): Capitol People First et al. v. California Department 
of Developmental Services et al. (ongoing); Examples of P&A monitoring 
roles: No role; this lawsuit is ongoing.

Lawsuit (status): Maryland: 

Lawsuit (status): Hunt et al. v. Meszaros et al. (Great Oaks Center; 
dismissed 1999); Examples of P&A monitoring roles: Although this 
lawsuit was dismissed, the P&A undertook a role with the Arc of 
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.

Lawsuit (status): Pennsylvania: 

Lawsuit (status): Richard C. et al. v. Snider et al.[A[(WESTERN CENTER; 
SETTLED 1993)] 93); Examples of P&A monitoring roles: 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 
"person-centered" 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.

Lawsuit (status): Nelson et al. v. Snider et al.[A] (Embreeville 
Center; settled 1994); Examples of P&A monitoring roles: 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.

[End of table]

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 services[Footnote 25] provided 
to all class members while they 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 well-being 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.

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.[Footnote 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.

Agency and Other Comments:

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.

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:

Signed by Kathryn G. Allen: 

[End of section]

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,[Footnote 27] 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 aggregate and state-
specific ADD data from 1999 through 2001 on P&A litigation services 
provided to this population.[Footnote 28]

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[Footnote 29]. 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.

[End of section]

Appendix II: P&A Lawsuits Related to Deinstitutionalization for 
Individuals with Developmental Disabilities, 1975-2002:

Table 4: 

Case name: Evans v. Washington[A]; Year filed: 1976; State: District of 
Columbia.

Case name: Garrity v. Gallen; Year filed: 1978; State: New Hampshire.

Case name: Baldridge v. Clinton[A]; Year filed: 1983; State: Arkansas.

Case name: Leisz v. Kavanagh; Year filed: 1985; State: Texas.

Case name: Conner v. Branstad; Year filed: 1986; State: Iowa.

Case name: Nicoletti v. Brown[A]; Year filed: 1987; State: Ohio.

Case name: Jackson v. Fort Stanton; Year filed: 1987; State: New 
Mexico.

Case name: Kope v. Watkins; Year filed: 1988; State: Michigan.

Case name: Parrent v. Angus; Year filed: 1989; State: Utah.

Case name: Martin v. Voinovich; Year filed: 1989; State: Ohio.

Case name: Richard C. et al. v. Snider et al.[B]; Year filed: 1989; 
State: Pennsylvania.

Case name: John S. v. Cuomo; Year filed: 1990; State: New York.

Case name: Weston v. Wyoming State Training School; Year filed: 1990; 
State: Wyoming.

Case name: Connecticut Traumatic Brain Injury Association v. Hogan; 
Year filed: 1990; State: Connecticut.

Case name: Hunt et al. v. Meszaros et al.[B]; Year filed: 1991; State: 
Maryland.

Case name: Coffelt et al v. California Department of Developmental 
Services et al.[B]; Year filed: 1990; State: California.

Case name: Nelson et al. v. Snider et al.[B]; Year filed: 1994; State: 
Pennsylvania.

Case name: Travis D. et al. v. Eastmont Human Services Center; Year 
filed: 1996; State: Montana.

Case name: People First of Washington v. Rainier Residential 
Habilitation Center; Year filed: 1996; State: Washington.

Case name: Richard S. et al. v. California Department of Developmental 
Services et al.[A, B]; Year filed: 1997; State: California.

Case name: Brown et al. v. Bush et al; Year filed: 1998; State: 
Florida.

Case name: Capitol People First et al. v. California Department of 
Developmental Services et al.[B]; Year filed: 2002; State: California.

Case name: The Arc of Delaware et al. v. Meconi et al; Year filed: 
2002; State: Delaware.

Case name: McCarthy et al. v. Gilbert et al; Year filed: 2002; State: 
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.

[End of table]

[End of section]

Appendix III: Comments from the Administration for Children and 
Families:

DEPARTMENT OF HEALTH & HUMAN SERVICES:

ADMINISTRATION FOR CHILDREN AND FAMILIES 
Office of the Assistant Secretary, Suite 600:

370 L'Enfant Promenade, S.W. Washington, D.C. 20447:

DATE: SEP 25 2003

TO:	Kathryn G. Allen:

Director, Health Care-Medicaid:

and Private Health Insurance Issues:

FROM:	Wade F. Horn, Ph.D. Assistant Secretary for Children and Families:

SUBJECT: Comments on the GAO Draft Report, "Protection and Advocacy 
Agencies: Involvement in Deinstitutionalization Lawsuits on Behalf of 
Individuals with Developmental Disabilities" (GAO-03-1044):

Attached are the Administration for Children and Families' comments on 
the subject GAO Draft Report.

Should you have any questions regarding our comments, please contact 
Faith McCormick, Acting Director, Division of Program Operations, 
Administration on Developmental Disabilities at (202) 690-6590.

Attachment:

COMMENTS OF THE ADMINISTRATION FOR CHILDREN AND FAMILIES ON THE GENERAL 
ACCOUNTING OFFICE'S DRAFT REPORT, "PROTECTION AND ADVOCACY AGENCIES: 
INVOLVEMENT IN DEINSTITUTIONALIZATION LAWSUITS ON BEHALF OF INDIVIDUALS 
WITH DEVELOPMENTAL DISABILITIES" (GAO-03-1044):

The Administration for Children and Families (ACF) appreciates the 
opportunity to comment on this draft report. We note that the General 
Accounting Office (GAO) made no specific recommendations.

General Comments:

The Administration on Developmental Disabilities (ADD) found that in 
the three Protection and Advocacy (P&A) agencies selected--California, 
Maryland and Pennsylvania--GAO has completed a thorough analysis of 
those agencies' involvement in the deinstitutionalization lawsuits on 
behalf of individuals with developmental disabilities. We found the 
report easily understandable; however, it is unclear how consumers and 
parents will react to the report in this snapshot because it does not 
represent the entire P&A system.

Other Comments:

Page 14, table 1; page 17, table 2; and page 23, table 3.

Tables I, 2, and 3 are clear and concise summaries of the major 
findings.

We recommend that GAO include the following definition for 
"Developmental Disabilities" either in the highlight section or in the 
letter to the Chairman in footnote I:

Developmental Disability is a severe, chronic disability (e.g., mental 
retardation, autism, cerebral palsy) of an individual five years of age 
or older that (I) is attributable to a mental or physical impairment or 
both, (2) is manifested before age 22, (3) is likely to continue 
indefinitely, and (4) results in substantial functional limitations in 
three or more of the following areas of major life activity: (i) self-
care, (ii) receptive and expressive language, (iii) leaming, (iv) 
mobility, (v) self-direction, (vi) capacity for independent living, and 
(vii) economic self-sufficiency.

[End of section]

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.

[End of section]

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.

FOOTNOTES

[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.

[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.

[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.

[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.

[10] According 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). 

[11] Other 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.

[12] See 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).

[13] ICF/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.

[14] These numbers do not add to the total of Medicaid long-term care 
spending on individuals with developmental disabilities cited above 
because of rounding.

[15] 42 U.S.C. § 1396n(c)(2000).

[16] A 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.

[17] This 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.

[18] FRCP 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).

[19] James Moore and Kevin Shirey, Moore's Federal Rules Pamphlet, Part 
1, § 23.14 Matthew Bender, 2003.

[20] We did not determine the number of P&A meetings with family 
members and guardians or the number of attendees for any of these 
lawsuits.

[21] Generally, 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).

[22] This 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).

[23] To 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).

[24] See 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).

[25] The Pennsylvania developmental disabilities services agency 
reimbursed the P&A for this advocate's services.

[26] We 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).

[27] 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).

[28] 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.

[29] 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.

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