Protection and Advocacy Agencies: Involvement in		 
Deinstitutionalization Lawsuits on Behalf of Individuals with	 
Developmental Disabilities (30-SEP-03, GAO-03-1044).		 
                                                                 
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. 		 
-------------------------Indexing Terms------------------------- 
REPORTNUM:   GAO-03-1044					        
    ACCNO:   A08629						        
  TITLE:     Protection and Advocacy Agencies: Involvement in	      
Deinstitutionalization Lawsuits on Behalf of Individuals with	 
Developmental Disabilities					 
     DATE:   09/30/2003 
  SUBJECT:   Civil procedure					 
	     Communication					 
	     Community health services				 
	     Judicial remedies					 
	     Monitoring 					 
	     Persons with disabilities				 
	     Reporting requirements				 
	     Deinstitutionalization				 
	     Developmental disabilities 			 
	     California 					 
	     HHS Protection and Advocacy System 		 
	     Maryland						 
	     Pennsylvania					 

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GAO-03-1044

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

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
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separately.

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

1The 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, S: 102(8), 114 Stat. 1683
(classified to 42 U.S.C. S: 15002 (8)), and 45 C.F.R. S: 1385.3 (2002).

2The 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.

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

3Except 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.

4See 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.

5As 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.

6See 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.

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

7Litigation 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.

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.)

8Formerly known as the Association for Retarded Citizens, the organization
changed its name to the Arc of the United States in 1992.

9These rules govern the conduct of civil actions in federal district or
state courts.

  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.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.

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. S: 1396n(c)(2000).

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.

  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.

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.

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   Initiated lawsuit   No court   Lawsuit is Not applicable. 
            2002                                              
                      seeking class   decision as   ongoing.  
                                           of                 
                         action       August 4,               
                                      2003.                   
                     certification.c                          

Maryland Pennsylvania Richard C. et al.

  Hunt et al. v.  Federal September Initiated      No.  Lawsuit           Not 
                               1991 lawsuit                      applicable.d 
  Meszaros et al.                   seeking class      dismissed 
                                                              by 
  (state-operated                       action          mutual   
    institution                     certification.     agreement 
  named is Great                                         March   
                                                         1999.   
Oaks Center)                                                  

           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.  Federal January      Initiated Yes.   Class       Phased    
        v.                 1994          lawsuit        action    community   
                                                                 placement    
Snider et al.                  seeking class       settlement and closure  
                                                                 of           
                                                                          the 
                                      action                     Embreevillle 
  (state-operated                                      approved     Center by 
    institution                   certification.        November  September   
                                                           1994.  30, 1997.f  
                                                                      Defined 
     named is                                                           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.

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

bThe 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.

cComplaint 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."

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

eThe Pennsylvania P&A contracted with the Disabilities Law Project in
Philadelphia, Pennsylvania, to file this suit.

fThe center closed in 1998.

  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 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

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.

aOther services include short-term assistance to obtain needed services,
technical assistance in self-advocacy, mediation/negotiation, and
administrative hearings.

bIncludes two of the named plaintiffs in the Coffelt lawsuit but does not
include unnamed class members.

  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, S: 30.212 (Third Ed., West
1995).

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, S:
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.

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).

  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,
S: 1:05 (1991 ed. Callaghan) (citing Rule 23(b)(2) of the Federal Rules of
Civil Procedure).

24See Aron at S: 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).

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 "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)

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.

aSettled as a class action lawsuit.

bThe 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.

cCase 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.

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.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

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

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

1See 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).

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.

2ADD 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.

3The 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.

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.

aP&A intervened.

bReviewed by GAO.

Appendix III: Comments from the Administration for Children and Families

Appendix III: Comments from the Administration for Children and Families

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.

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.

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