oversight

Protection and Advocacy Agencies: Involvement in Deinstitutionalization Lawsuits on Behalf of Individuals with Developmental Disabilities

Published by the Government Accountability Office on 2003-09-30.

Below is a raw (and likely hideous) rendition of the original report. (PDF)

                 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 

                                                September 2003


                                                PROTECTION AND ADVOCACY
                                                AGENCIES

Highlights of GAO-03-1044, a report to the      Involvement in Deinstitutionalization
Chairman, Subcommittee on Oversight
and Investigations, Committee on Energy         Lawsuits on Behalf of Individuals with
and Commerce, House of Representatives
                                                Development Disabilities


Congress established the                        Lawsuits related to deinstitutionalization brought on behalf of persons with
Protection and Advocacy system in               developmental disabilities are a small part of P&As’ overall activities for this
1975 to protect the rights of                   population. GAO identified 24 such lawsuits that P&As filed, joined, or
individuals with developmental                  intervened in from 1975 through 2002. During the same period, P&As filed or
disabilities, most of whom have                 intervened in 6 of these lawsuits in the three states GAO reviewed—
mental retardation. Protection and
Advocacy agencies (P&A) use
                                                California, Maryland, and Pennsylvania. Three of the 6 were settled as class
investigative and legal activities to           actions; the other 3 were intended, but not settled, as class actions. One is
advocate on behalf of these                     ongoing, one was dismissed, and one was settled by multiparty agreement.
individuals. Deinstitutionalization
has refocused delivery of care to               P&As’ communications with parents and guardians regarding the lawsuits in
this population over the last several           the three states were consistent with federal rules. For the three suits
decades from large public                       settled as class actions, P&As complied with the requirement to provide
institutions to community settings.             notice to all class members when a settlement agreement is proposed to the
Refocusing service delivery                     court. Such notice was not required in the other three cases, which were not
resulted from (1) the desire to                 class actions. Representatives of some parent groups told GAO that parents
deliver care in the most integrated             and guardians were dissatisfied with the extent of P&A communication with
setting and to control costs and
(2) the outcomes of
                                                them before a settlement was proposed, citing problems such as not
deinstitutionalization lawsuits                 receiving notice of a family member’s inclusion in the class, which the parent
brought by P&As and others. Some                or guardian opposed. P&As in the three states told GAO they did not
parents have raised concerns that               communicate with every person potentially affected by the six lawsuits
P&As emphasize these suits over                 before a proposed settlement agreement, although they did communicate
other activities, inadequately                  with organizations representing some parents and guardians during that
inform them of family members’                  time. However, even if P&As had made such notification, under the
inclusion in the suits, and do not              applicable federal rule of civil procedure, an individual has no explicit right
adequately monitor individuals                  to opt out of the class in this type of case.
after their transfer to the
community. GAO was asked to                     P&As in the three states assumed various roles in monitoring the health and
review the extent to which P&As
engage in lawsuits related to
                                                well-being of individuals transferred to community settings in four of the five
deinstitutionalization of these                 resolved lawsuits we reviewed, although state developmental disabilities
individuals, how P&As                           services agencies have the primary responsibility for ensuring the quality of
communicate with affected parents               services provided to these individuals. P&As’ roles varied with the
and guardians in these suits, and               circumstances of the lawsuits and the initiatives P&As in the three states
the role P&As have played in                    undertook using their authority to protect and advocate the rights of
monitoring the well-being of                    individuals with developmental disabilities. For example, although the three
individuals transferred to the                  class action settlement agreements did not specify monitoring roles, the
community. GAO compiled a                       P&As assumed roles, such as reviewing information about the quality of
national list of lawsuits related to            community services that the settlement agreements required the states to
deinstitutionalization involving                develop and reviewing care plans of individuals who had been transferred.
P&As and reviewed the suits and
related activities in three states—
                                                Representatives of some parent groups told GAO that parents and guardians
California, Maryland, and                       have been dissatisfied with the adequacy of the P&As’ monitoring role in
Pennsylvania.                                   community placements, while representatives of other parent groups said
                                                they generally supported the P&A monitoring role.
www.gao.gov/cgi-bin/getrpt?GAO-03-1044.

To view the full product, including the scope   The Administration for Children and Families said GAO’s analysis of the
and methodology, click on the link above.       three P&As’ involvement in deinstitutionalization lawsuits is thorough and
For more information, contact Kathryn G.
Allen at (202) 512-7118.
                                                the P&As GAO reviewed said that the report is accurate.
Contents 



Letter                                                                                              1
                       Results in Brief 
                                                           5
                       Background
                                                                  6
                       Lawsuits Related to Deinstitutionalization Are a Small Part of P&A 

                         Activities                                                               10
                       P&As in Three States Used Litigation to Address a Small
                         Percentage of Client Problems                                            13
                       P&As’ Communications in Three States Were Consistent with
                         Federal Rules but Not as Comprehensive as Some Parents
                         Desired                                                                  15
                       P&As in the Three States Assumed Various Roles in Monitoring
                         Individuals Transferred to Community Settings                            18
                       Agency and Other Comments                                                  22

Appendix I             Objectives, Scope, and Methodology                                         24



Appendix II 	          P&A Lawsuits Related to Deinstitutionalization
                       for Individuals with Developmental Disabilities,
                       1975–2002                                                                  26



Appendix III 	         Comments from the Administration for Children
                       and Families                                                               27



Appendix IV            GAO Contact and Staff Acknowledgments                                      29
                       GAO Contact                                                                29
                       Acknowledgments                                                            29

Related GAO Products                                                                              30



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




                       Page i                            GAO-03-1044 Protection and Advocacy Agencies
         Developmental Disabilities in California, Maryland, and
         Pennsylvania, 1975–2002                                                          11
Table 2: P&A Services Used to Address Problems of Individuals
         with Developmental Disabilities in California, Maryland,
         and Pennsylvania, Fiscal Years 1999–2001                                         14
Table 3: Roles P&As Assumed in Monitoring Individuals Affected
         by Lawsuits Reviewed in California, Maryland, and
         Pennsylvania                                                                     19




Abbreviations

ACF               Administration for Children and Families 

ADD               Administration on Developmental Disabilities 

CMS               Centers for Medicare & Medicaid Services 

DD Act            Developmental Disabilities Assistance and Bill of Rights 

                   Act of 2000
FRCP              Federal Rules of Civil Procedure
HCBS              home and community-based services
IPP               Individual Program Plan
HHS               Department of Health and Human Services
ICF/MR            intermediate care facility for the mentally retarded
OIG               Office of Inspector General
NAPAS             National Association of Protection & Advocacy Systems,
                   Inc.
P&A               Protection and Advocacy agency
VOR               Voice of the Retarded



This is a work of the U.S. government and is not subject to copyright protection in the
United States. It may be reproduced and distributed in its entirety without further
permission from GAO. However, because this work may contain copyrighted images or
other material, permission from the copyright holder may be necessary if you wish to
reproduce this material separately.




Page ii                                  GAO-03-1044 Protection and Advocacy Agencies
United States General Accounting Office
Washington, DC 20548




                                   September 30, 2003

                                   The Honorable James C. Greenwood
                                   Chairman, Subcommittee on Oversight
                                    and Investigations
                                   Committee on Energy and Commerce
                                   House of Representatives

                                   Dear Mr. Chairman:

                                   Congress established the Protection and Advocacy system in the states
                                   and territories in 1975 to protect and advocate the rights of individuals
                                   with developmental disabilities, most of whom have mental retardation.1 In
                                   fiscal year 2002, the 57 Protection and Advocacy agencies (P&A) received
                                   $35 million in federal funding for this purpose.2 To advocate on behalf of
                                   individuals with developmental disabilities, P&As undertake a range of
                                   administrative, information and referral, investigative, and legal activities.
                                   These activities can include representing individuals with developmental
                                   disabilities in lawsuits. Some of these lawsuits have resulted in moving
                                   individuals with developmental disabilities from institutional care settings
                                   to care settings in the community such as group homes and apartments, a
                                   process that is referred to as deinstitutionalization. Some parents and legal
                                   guardians of individuals involved in these suits have supported P&A
                                   efforts in bringing these suits and implementing the settlements that have
                                   resulted. Other parents and guardians of individuals affected by these
                                   suits, however, have organized to oppose the suits and the implementation




                                   1
                                    The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act), Pub. L.
                                   No. 106-402, 114 Stat.1677. Predecessor acts include the Developmental Disabilities
                                   Assistance and Bill of Rights Act, Pub. L. No. 97-35, title IX, subtitle B, 95 Stat. 563 (1981)
                                   and the Developmentally Disabled Assistance and Bill of Rights Act, Pub. L. No. 94-103, 89
                                   Stat. 486 (1975). Developmental disabilities include mental retardation, autism, and
                                   cerebral palsy. Individuals with developmental disabilities generally require lifelong
                                   residential support. For a more detailed explanation of developmental disabilities, see the
                                   DD Act, § 102(8), 114 Stat. 1683 (classified to 42 U.S.C. § 15002 (8)), and 45 C.F.R. § 1385.3
                                   (2002).
                                   2
                                    The Administration on Developmental Disabilities in the Department of Health and Human
                                   Services provides funding under the DD Act to P&As in the 50 states, the District of
                                   Columbia, territories, and the Native American consortium located in Shiprock, New
                                   Mexico.



                                   Page 1                                      GAO-03-1044 Protection and Advocacy Agencies
of certain aspects of court-approved settlements because of concerns they
have regarding the care of their family members.3

Deinstitutionalization of individuals with developmental disabilities has
changed the way that services are provided for this population over the
last several decades as states have moved their focus of care from large,
public institutions to settings in the community. These large facilities are
usually intermediate care facilities for the mentally retarded (ICF/MR)
certified to participate in Medicaid. From 1980 through 2002, the average
daily number of people with developmental disabilities living in large
institutions declined from about 131,000 to about 44,000 as states
downsized or closed such institutions.4 This change occurred for several
reasons, including a greater emphasis on providing services in the most
integrated setting, states’ desires to control costs, and the outcomes of
certain lawsuits. As a result, individuals in large facilities today are mostly
adults who have lived in institutions for many years because fewer
individuals are being admitted to such facilities and instead are receiving
their care in community settings. Care in large, public institutions for
individuals with developmental disabilities is no longer provided in eight
states and the District of Columbia, and the number of individuals
receiving institutional care has declined in most other states.5 Many of the
former residents of institutions now receive care in group homes or other
community settings as do many other individuals who were never
residents of institutions. Altogether, more than 420,000 individuals with
developmental disabilities were receiving care in community settings as of
June 30, 2002.6 The largest source of public funding for these institutional
and community services is Medicaid, the federal-state program that


3
 Except as noted, we use the phrase “parents and guardians” to refer to parents, other
family members, and legal guardians acting on behalf of their adult children or dependents
in institutions. Family members may also be legal guardians. In some instances, legal
guardians may not be family members.
4
 See Kathryn Coucouvanis et al., “Current Populations and Longitudinal Trends of State
Residential Settings (1950-2002),” in R.W. Prouty, Gary Smith, and K.C. Lakin, eds.,
Residential Services for Persons with Developmental Disabilities: Status and Trends
Through 2002 (Minneapolis, Minn.: University of Minnesota, Research and Training Center
on Community Living, Institute on Community Integration, 2003), 7.
5
 As of June 30, 2002, Alaska, the District of Columbia, Hawaii, Maine, New Hampshire, New
Mexico, Rhode Island, Vermont, and West Virginia no longer operated large institutions for
persons with developmental disabilities.
6
 See K. Charlie Lakin et al., “Utilization of and Expenditures for Medicaid Institutional and
Home and Community Based Services,” in Residential Services for Persons with
Developmental Disabilities, 104.



Page 2                                     GAO-03-1044 Protection and Advocacy Agencies
finances health care coverage for certain low-income and disabled
populations. State developmental disabilities services agencies administer
most of the services provided to this population and have primary
responsibility for monitoring these services in institutions and in
community settings.

In advocating on behalf of individuals with developmental disabilities in
institutions, P&As and others7 have filed, joined, or intervened in lawsuits
relating to deinstitutionalization. Some of these lawsuits have been class
action lawsuits on behalf of classes of individuals. Deinstitutionalization
lawsuits brought against large, public institutions have alleged
inappropriate care and treatment, including abuse and neglect of
residents, and breaches of statutory and constitutional rights. Some of
these suits have lasted for years, and the courts’ decisions have sometimes
taken additional years to implement after the cases have been decided.
Some parents opposing these P&A efforts have expressed concerns that
P&As emphasize deinstitutionalization lawsuits over other activities; that
P&As do not adequately communicate with parents and guardians of
individuals potentially affected by these lawsuits, such as notifying them
of the inclusion of their family members in the suits; and that P&As do not
assume adequate monitoring roles for the health and well-being of
individuals moved from institutions to community settings in such suits.

Because of these concerns, you asked us to review certain P&A activities.
We examined (1) the extent to which P&As engage in litigation related to
deinstitutionalization on behalf of individuals with developmental
disabilities, (2) how P&As have communicated with parents and legal
guardians in deinstitutionalization lawsuits, and (3) the role, if any, that
P&As have played in monitoring the health and well-being of individuals
transferred from institutions to community settings within the context of
these lawsuits.

To examine the extent to which P&As engage in litigation related to
deinstitutionalization on behalf of individuals with developmental
disabilities, we analyzed several data sources and consulted with national
and state organizations because there is no single, national source of
information on P&A litigation activities. We contacted the Administration


7
 Litigation focusing on the legal rights of institutionalized persons with developmental
disabilities also has been filed by attorneys working for public legal assistance programs,
such as public interest law centers and legal aid societies, as well as by private attorneys
and the Department of Justice.




Page 3                                     GAO-03-1044 Protection and Advocacy Agencies
on Developmental Disabilities (ADD), within the Administration for
Children and Families (ACF), Department of Health and Human Services
(HHS), which administers the Developmental Disabilities Assistance and
Bill of Rights Act of 2000 (DD Act); the National Association of Protection
& Advocacy Systems, Inc. (NAPAS), which represents P&As; the National
Association of State Directors of Developmental Disabilities Services,
which represents state developmental disabilities services agencies; and
representatives of family advocacy organizations including Voice of the
Retarded (VOR) and the Arc of the United States.8 From these sources, we
compiled a national list of lawsuits related to deinstitutionalization that
P&As filed, joined, or intervened in on behalf of individuals with
developmental disabilities from 1975 through 2002. To examine P&A
activities more closely, we chose three states—California, Maryland, and
Pennsylvania—that national organizations we consulted indicated are
among the states with P&As that are more active in deinstitutionalization
litigation. We examined all six lawsuits regarding deinstitutionalization in
these three states that were in the national list of lawsuits we developed.
To obtain information on P&A communication with parents and guardians
in these three states, we interviewed P&A officials, representatives of state
developmental disabilities services agencies, and representatives of parent
groups. In addition, we reviewed federal and relevant state rules of civil
procedure9 concerning notification of class members in class action
lawsuits. To obtain information on P&A roles in monitoring the health and
well-being of individuals in the community, we interviewed P&A officials,
analyzed settlement agreements and other documents related to the six
lawsuits, and interviewed representatives of state developmental
disabilities services agencies and parent groups. We did not independently
verify the extent of P&As’ monitoring activities or assess their
effectiveness. We did our work from October 2002 through September
2003 in accordance with generally accepted government auditing
standards. (See app. I for more details on our scope and methodology.)




8
 Formerly known as the Association for Retarded Citizens, the organization changed its
name to the Arc of the United States in 1992.
9
These rules govern the conduct of civil actions in federal district or state courts.




Page 4                                     GAO-03-1044 Protection and Advocacy Agencies
                     Lawsuits related to deinstitutionalization that are brought on behalf of
Results in Brief 
   individuals with developmental disabilities are a small part of P&As’
                     activities for this population, both nationwide and for P&As in the three
                     states reviewed. Nationwide, we identified 24 lawsuits that P&As filed,
                     joined, or intervened in related to deinstitutionalization from 1975 through
                     2002. Most, but not all, were intended to be class actions against large
                     public institutions providing services to persons with mental retardation
                     and related developmental disabilities. From 1975 through 2002, P&As in
                     the three states we reviewed—California, Maryland, and Pennsylvania—
                     filed or intervened in six lawsuits related to deinstitutionalization. Three of
                     the six were settled in 1993 or 1994 as class action lawsuits. Three were
                     not settled as class action lawsuits. Litigation in one of these suits is
                     ongoing, the second was dismissed in 1999 after the institution concerned
                     was closed, and the third was settled in 2001. For some of the lawsuits we
                     reviewed, implementation of court decisions regarding
                     deinstitutionalization continued for years after settlement. P&As in the
                     three states reported that they used litigation of all types, including
                     litigation related to deinstitutionalization, in 1.5 percent of client problems
                     they addressed from fiscal years 1999 through 2001. These P&As reported
                     that they addressed the vast majority of client problems through
                     negotiation, technical assistance, and other assistance rather than through
                     litigation.

                     P&As in the three states communicated with parents and guardians as
                     required by federal rules in the lawsuits we reviewed. In the three cases
                     settled as class actions, P&As provided notice to all class members at the
                     time settlement was proposed to the court, as required by federal rules.
                     Two of these three lawsuits were certified in federal court and the third
                     was certified in a state court that followed federal rules regarding
                     notification of class members. Such notice was not required in the other
                     three cases we reviewed that were not class action lawsuits.
                     Representatives of some parent groups told us that they believed the P&As
                     should have communicated with parents and guardians in the six lawsuits
                     we examined before filing or intervening in the lawsuits, and prior to class
                     certification by the court, even though P&As were not required to do so.
                     P&As in the three states indicated that they did not try to communicate
                     with all individuals potentially affected by the six lawsuits, including
                     parents and guardians, during these stages of the lawsuits but that they did
                     undertake some communication with organizations representing some
                     parents and guardians of affected individuals during the lawsuits.
                     However, even if P&As had made such notification to all potentially
                     affected individuals, under the applicable federal rule of civil procedure,



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

               P&As in the three states assumed various roles in monitoring the health
               and well-being of individuals transferred from institutions to community
               settings in four of the five deinstitutionalization lawsuits we reviewed that
               have been resolved, although state developmental disabilities services
               agencies have the primary responsibility for monitoring the quality of
               services provided to individuals with developmental disabilities. P&As
               assumed these roles even though not required to do so in the settlement
               agreements resulting from the lawsuits. For example, in the three class
               action lawsuits we examined, the P&A role has been to monitor some or
               all class members involved in settlement agreements. This monitoring role
               included reviewing information that the settlement agreements required
               states to develop about the quality of community services provided,
               conducting site visits, and reviewing plans of care. In the fourth case we
               reviewed in which the P&A had a monitoring role, the P&A reported that it
               had a role to assist families that experienced problems in community
               placements. Representatives of some parent groups told us that parents
               and guardians have been dissatisfied with the adequacy of P&As’
               monitoring role in community placements, while representatives of other
               parent groups told us they generally supported the P&A monitoring role.

               In commenting on a draft of this report, ACF said it was a thorough
               analysis of the three P&As’ involvement in deinstitutionaliation lawsuits
               for the population examined. P&A officials in the three states that we
               reviewed said that the report is accurate and also provided technical
               comments.


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




               Page 6                               GAO-03-1044 Protection and Advocacy Agencies
agencies. P&A staffing typically includes management, investigators,
advocates, attorneys, and administrative staff.10 The P&A in one state we
reviewed also contracted with another organization to conduct lawsuits on
its behalf.

ADD provides annual funding to P&As, the amount of which is determined
by a formula that uses several measures, including state population
weighted by relative per capita income in the state and a measure of the
relative need for services by individuals with developmental disabilities. In
fiscal year 2003, ADD funding for P&As was set at $36.3 million, a
$1.3 million increase over fiscal year 2002. Funding amounts to states
ranged from $345,429 to $2,978,192 for fiscal year 2003. For P&As in
California, Maryland, and Pennsylvania, these amounts were $2,978,192,
$468,934, and $1,388,495, respectively. P&As also may receive funding
from other sources to serve individuals with developmental disabilities,
including state and private funds. In addition, P&As often serve
populations other than individuals with developmental disabilities and
receive separate funding for that purpose.11

Although state developmental disabilities services agencies are primarily
responsible for arranging for the provision of services and oversight of
quality for services received by individuals with developmental disabilities,
the DD Act authorizes P&As to play an important role in monitoring these
services. The DD Act authorizes P&As to investigate allegations of abuse
and neglect when reported or if there is probable cause to believe that
incidents occurred and to pursue legal, administrative, and other
appropriate remedies or approaches on behalf of individuals with
developmental disabilities. The act grants P&As access to individuals with
developmental disabilities and to their records, including reports prepared
by agencies or staff on injuries or deaths. Under this authority, P&As
typically undertake monitoring efforts to review the adequacy of services
that individuals receive in institutions and in community settings and to



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.




Page 7                                    GAO-03-1044 Protection and Advocacy Agencies
examine state oversight of quality assurance and regulatory compliance
for residential services providers.

Many individuals with developmental disabilities for whom P&As advocate
are eligible to receive publicly financed residential services through
Medicaid, which is the largest source of funds for services for individuals
with developmental disabilities. State developmental disabilities services
agencies have primary responsibility for monitoring the quality of services
provided to individuals with developmental disabilities, including those
services funded by Medicaid. In 2002, Medicaid financed 77 percent
($26.8 billion) of the total $34.7 billion in total long-term care spending on
individuals with developmental disabilities.12 Medicaid spending was about
$10.9 billion for ICF/MR residents including those living in large
institutions;13 about $12.9 billion for individuals with developmental
disabilities receiving home and community-based services (HCBS) under
Medicaid waivers; and an additional $2.9 billion for other services
provided in community settings, such as personal care.14

Residential choices for individuals with developmental disabilities vary by
state since states choose whether to offer these individuals services in
ICF/MRs, which is an optional rather than a mandatory benefit in
Medicaid, and whether to provide services in community settings through
HCBS waivers. States may apply to the Centers for Medicare & Medicaid
Services (CMS) for waivers under section 1915(c) of the Social Security
Act to provide HCBS services as an alternative to institutional care in
ICF/MRs and waive certain Medicaid requirements that would otherwise
apply, such as statewideness, which requires that services be available
throughout the state, and comparability, which requires that all services be
available to all eligible individuals.15 For both the ICF/MR and waiver



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).




Page 8                                     GAO-03-1044 Protection and Advocacy Agencies
programs, protecting the health and welfare of Medicaid-covered
individuals receiving services is a shared federal-state responsibility.
Under the ICF/MR optional benefit program, states annually inspect
institutions to ensure that they meet federal quality standards. Under
Medicaid waivers, states must include assurances to CMS that necessary
safeguards are in place to protect beneficiaries.

In pursuing legal remedies on behalf of individuals with developmental
disabilities, P&As have represented individuals as well as groups or
classes of individuals in lawsuits. All such lawsuits are subject to rules of
procedure that govern proceedings in the relevant court. Many of these
cases take place in federal court, where the Federal Rules of Civil
Procedure (FRCP) apply. FRCP Rule 23 establishes procedural
requirements for class action lawsuits in federal district court, including
the circumstances under which individuals must be notified of their
inclusion in a class prior to class formation, referred to as certification by
the court, and notified of proposed settlements of lawsuits on their behalf.
The requirements vary depending upon whether the suit is for injunctive
relief or monetary damages. Lawsuits for injunctive relief seek a court
order requiring another party to do or refrain from doing a specified act.
For suits seeking injunctive relief, the type of class action suit P&As
generally bring, the rule does not require notification of individuals’
inclusion in a class prior to class formation.16 The rule does, however,
require notification of class members at the time of proposed settlement.
By contrast, for class action suits seeking monetary relief, the rule requires
that individuals be notified of their inclusion in a class prior to its
formation.




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.




Page 9                                   GAO-03-1044 Protection and Advocacy Agencies
                         Nationwide and for the three states reviewed, lawsuits related to
Lawsuits Related to      deinstitutionalization on behalf of individuals with developmental
Deinstitutionalization   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
Are a Small Part of      deinstitutionalization from 1975 through 2002. P&As filed or intervened in
P&A Activities           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   National data sources indicate that, from 1975 through 2002, P&As filed,
Intervened in Few        joined, or intervened in approximately 24 lawsuits related to
Lawsuits Relating to     deinstitutionalization on behalf of individuals with developmental
                         disabilities. (See app. II.) Most but not all of these lawsuits were intended
Deinstitutionalization   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



                         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.




                         Page 10                                  GAO-03-1044 Protection and Advocacy Agencies
                                              settled in 1994 but was part of the impetus for closing the Embreeville
                                              Center in 1998.

Table 1: Lawsuits Related to Deinstitutionalization That P&As Filed or Intervened in on Behalf of Individuals with
Developmental Disabilities in California, Maryland, and Pennsylvania, 1975–2002

                     Federal/                                               Class certified                          Examples of actions
 Lawsuit             state court Date filed             P&A actions         by court?          Status of case        required by settlement
 California
 Coffelt et al. v.   State       February 1990          Initiated lawsuit   Yes.               Class action          Required state officials to
 California                                             seeking class                          settlement            reduce the number of
 Department of                                          action                                 approved              individuals with
 Developmental                                          certification.                         January 1994.         developmental disabilities
 Services et al.                                                                                                     living in large state
 (various                                                                                                            developmental centers by
 institutions and                                                                                                    2,000 over 5 years and
 regional centers                                                                                                    provide services to them
 named among                                                                                                         in community-based
 defendants)a                                                                                                        settings, and engage in
                                                                                                                     system improvement
                                                                                                                     activities.
 Richard S. et al.   Federal     March 1997 	           In a lawsuit    No.                    C
                                                                                               	 ourt issued         Injunction overturned state
 v. California                                          initiated by                           permanent             policy permitting family
 Department of                                          plaintiffs                             injunction in April   member or guardian veto
 Developmental                                          seeking class                          2000.                 of community placement
                 b
 Services et al.                                        action                                 Multiparty            decisions for adult
                                                        certification,                         settlement            developmental center
                                                        P&A intervened                         agreement             residents.
                                                        to seek                                approved in           Settlement instituted
                                                        injunction                             January 2001.         policy ensuring that when
                                                        against state                                                a member of the IPP team
                                                        policy allowing                                              for the individual with
                                                        family members                                               developmental disabilities
                                                        or guardians                                                 objects to community
                                                        (referred to as                                              placement, a hearing may
                                                        conservators in                                              be requested in state court
                                                        California) to                                               on the individual’s
                                                        veto community                                               proposed community
                                                        placement                                                    placement.
                                                        decisions made
                                                        by a member of
                                                        the Individual
                                                        Program Plan
                                                        (IPP) team.




                                              Page 11                                         GAO-03-1044 Protection and Advocacy Agencies
                            Federal/                                                               Class certified                         Examples of actions
 Lawsuit                    state court Date filed                           P&A actions           by court?          Status of case       required by settlement
 Capitol People    State                        January 2002                 Initiated lawsuit     No court        Lawsuit is              Not applicable.
 First et al. v.                                                             seeking class         decision as of  ongoing.
 California                                                                  action                August 4, 2003.
 Department of                                                               certification.c
 Developmental
 Services et al.
 (various regional
 centers named
 among
 defendants)
 Maryland
 Hunt et al. v.             Federal             September 1991               Initiated lawsuit     No.                Lawsuit              Not applicable.d
 Meszaros et al.                                                             seeking class                            dismissed by
 (state-operated                                                             action                                   mutual
 institution                                                                 certification.                           agreement
 named is Great                                                                                                       March 1999.
 Oaks Center)
 Pennsylvania
 Richard C. et al. Federal                      September 1989               Initiated lawsuit     Yes.               Class action         Defined activities for state
 v. Snider et al.                                                            seeking class                            settlement           officials in planning and
 (state-operated                                                             action                                   approved             implementing phased
 institution                                                                 certification.                           June 1993.           community placement and
 named is                                                                                                                                  establishing a quality
 Western                                                                                                                                   assurance program.
 Center)e
 Nelson et al. v.           Federal             January 1994                 Initiated lawsuit     Yes.               Class action         Phased community
 Snider et al.                                                               seeking class                            settlement           placement and closure of
 (state-operated                                                             action                                   approved             the Embreevillle Center by
                                                                                                                                                                  f
 institution                                                                 certification.                           November 1994.       September 30, 1997.
 named is                                                                                                                                  Defined state activities for
 Embreeville                                                                                                                               planning and
          e
 Center)                                                                                                                                   implementing a quality
                                                                                                                                           assurance program.

Sources: California, Maryland, and Pennsylvania P&As and settlement agreements for the lawsuits.
                                                                 a
                                                                     Regional centers named in lawsuit include San Andreas, Golden Gate, East Bay, and North Bay.
                                                                 b
                                                                  The P&A intervened in a multiparty suit that included individual plaintiffs from Fairview
                                                                 Developmental Center. Both the permanent injunction and the settlement agreement as approved by
                                                                 the court apply statewide to institutions for developmentally disabled individuals.
                                                                 c
                                                                  Complaint proposes a class of “all Californians with developmental disabilities … who are or will be
                                                                 institutionalized, and those who are or will be at risk of being institutionalized, in either public or
                                                                 private facilities including, but not limited to, the Developmental Centers (DCs), Skilled Nursing
                                                                 Facilities (SNFs), Intermediate Care Facilities — Developmentally Disabled (ICF-DDs), large
                                                                 congregate Community Care Facilities (CCFs), psychiatric hospitals, or children’s shelters.”
                                                                 d
                                                                     Although not required as a result of the lawsuit, the Great Oaks Center closed in June 1996.
                                                                 e
                                                                  The Pennsylvania P&A contracted with the Disabilities Law Project in Philadelphia, Pennsylvania, to
                                                                 file this suit.
                                                                 f
                                                                     The center closed in 1998.




                                                                 Page 12                                             GAO-03-1044 Protection and Advocacy Agencies
                       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
P&As in Three States   infrequently to address client problems according to available data from
Used Litigation to     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-
Address a Small        year period, or about 1.5 percent of all problems addressed. (See table 2.)
Percentage of Client   This included litigation on behalf of named plaintiffs in
                       deinstitutionalization litigation, such as class action lawsuits, and other
Problems               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.




                       Page 13                             GAO-03-1044 Protection and Advocacy Agencies
Table 2: P&A Services Used to Address Problems of Individuals with Developmental Disabilities in California, Maryland, and
Pennsylvania, Fiscal Years 1999–2001

                                                                                                    Percentage
                                               Assistance        Assistance                       of total client
                                        provided through provided through                             problems          Percentage of total
                                       litigation (number     other servicesa                        addressed             client problems
                                                  of client (number of client                           through         addressed through
                                                problems)         problems)                 Total      litigation           other services
 California Protection &
 Advocacy, Inc.
 2001                                                    16b                  1,002         1,018                1.6                       98.4
 2000                                                      9                  3,281         3,290                0.3                       99.7
 1999                                                     28                  4,586         4,614                0.6                       99.4
 Pennsylvania Protection and
 Advocacy, Inc.
 2001                                                     65                  2,451         2,516                2.6                       97.4
 2000                                                     89                  2,672         2,761                3.2                       96.8
 1999                                                     39                  3,661         3,700                1.1                       98.9
 Maryland Disability Law Center
 (Maryland P&A)
 2001                                                      0                    178           178                  0                      100.0
 2000                                                     11                     68            79              13.9                        86.1
 1999                                                     15                     48            63              23.8                        76.2
 Total                                                  272                 17,947        18,219                 1.5                       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.




                                         Page 14                                        GAO-03-1044 Protection and Advocacy Agencies
                             P&As in the three states communicated with parents and guardians as
P&As’                        required by federal rules in the lawsuits we reviewed. In the three cases
Communications in            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.
Three States Were            Such notice was not required in the other three cases we reviewed, which
Consistent with              were not class actions. Even though P&As provided the notice required by
                             federal rules in the lawsuits we examined, representatives of some parent
Federal Rules but Not        groups told us they believed that P&As should have communicated with
as Comprehensive as          parents and guardians before filing or intervening in these lawsuits and
Some Parents Desired         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           In the three class action lawsuits we reviewed, P&As complied with FRCP
Requirement to Provide       Rule 23, which requires communication with all class members prior to
Notice to All Class          settlement. Two of these lawsuits were filed and settled in federal district
                             court, where the FRCP applied directly, and one lawsuit was filed and
Members Prior to a Court’s   settled in California superior court, where, under prevailing law at that
Approval of a Settlement     time, the judge applied the FRCP.
Agreement
                             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



                             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).




                             Page 15                                   GAO-03-1044 Protection and Advocacy Agencies
                           register objections with the court, thereby assisting the court in
                           determining whether the proposed settlement is fair, adequate, and
                           reasonable.19 We confirmed that such notice was provided in each of the
                           three cases. Such notice was not required in the other three cases we
                           reviewed, which were not class action lawsuits.


P&As’ Communication        P&As’ communication before a settlement was proposed to the court was
Was Not as Comprehensive   not as comprehensive as some parents desired in the lawsuits we
as Some Parents Desired    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


                           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.




                           Page 16                                 GAO-03-1044 Protection and Advocacy Agencies
during the litigation. The P&A did not, however, meet with parent
organizations specifically associated with the institutions. In both of those
lawsuits, the organizations specifically associated with the institutions
were or are involved as parties, thus complicating direct communication
between the P&A and parents and guardians who might belong to these
organizations.21 A Maryland P&A official told us that, before filing the Hunt
v. Meszaros litigation in 1991, the P&A met with an organization
representing parents and guardians of residents of the affected facility—
the Great Oaks Center. A Pennsylvania P&A official told us that the P&A
met with a parent group representing Embreeville Center residents during
the Nelson v. Snider litigation (1994)—both before filing the lawsuit and
after the court’s certification of a class action. These efforts were
complicated by the fact that this organization had already filed another
lawsuit against the state.22 A Pennsylvania P&A official said that the P&A
tried unsuccessfully to meet with an organization representing parents and
guardians of Western Center residents prior to filing the Richard C. v.
Snider lawsuit (1989) and that such efforts were complicated by another
lawsuit filed against the P&A by that organization. Representatives of
some parent groups, however, told us that P&A communication
concerning the lawsuits with parents and guardians of affected individuals
was limited.

Three of the six lawsuits we examined—Nelson v. Snider, Richard. C. v.
Snider, and Coffelt v. California Department of Developmental
Services—were certified by the courts as class actions. The P&As
indicated that they did not attempt to notify all prospective class members
prior to certification of their classes by the court for the reasons discussed
above. P&As told us they maintained regular contact with all named
plaintiffs in the lawsuits. Representatives of some parent groups said that
parents and guardians of individuals affected as unnamed class members
in the lawsuits had insufficient opportunity to express their views about
the inclusion of their adult children in the class and were not notified that
their children might be included until the settlement was proposed to the
court. As a result, some individuals may have been included in class



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).




Page 17                                   GAO-03-1044 Protection and Advocacy Agencies
                     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
P&As in the Three    individuals with developmental disabilities transferred from institutions to
States Assumed       community settings in four of five lawsuits we reviewed in California,
                     Maryland, and Pennsylvania that had been resolved. (See table 3.) No P&A
Various Roles in     monitoring role has been established in the sixth suit we reviewed, in
Monitoring           which litigation is ongoing. In these three states, P&A roles and
                     responsibilities varied with the circumstances of the lawsuits and
Individuals          initiatives P&As undertook as part of their general role to protect and
Transferred to       advocate the rights of individuals with developmental disabilities. State
Community Settings   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


                     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).




                     Page 18                                     GAO-03-1044 Protection and Advocacy Agencies
                                            in one of these suits. P&As are not playing a monitoring role in the other
                                            two suits—in one because of the nature of the suit, and in the other
                                            because litigation is ongoing.

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

Lawsuit (status)                                  Examples of P&A monitoring roles
California
Coffelt et al. v. California Department of        The P&A assumed the role of monitoring class members transferred to community
                                a
Developmental Services et al. (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.                The P&A assumed the role of monitoring each class member. This role included
(Western Center; settled 1993)                    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.




                                            Page 19                                     GAO-03-1044 Protection and Advocacy Agencies
 Lawsuit (status)                                                             Examples of P&A monitoring roles
                                          a
 Nelson et al. v. Snider et al.                                               The P&A assumed the role of monitoring 50 class members who had no family
 (Embreeville Center; settled 1994)                                           members to assist them. Monitoring responsibilities for these individuals prior to
                                                                              their discharge from the center included reviewing plans of care and examining
                                                                              community facilities. After community placements, the P&A role encompassed
                                                                              visiting homes and day programs, and attending treatment meetings for up to 1
                                                                              year. A P&A official also reported the role of monitoring 15 to 20 class members
                                                                              who had problems with community placements by contacting the appropriate entity
                                                                              such as the provider, the county, court monitor, and/or the state developmental
                                                                              services agency. Examples of problems in community settings included absence of
                                                                              adaptive equipment or day activities, inadequate staffing, inadequate dental
                                                                              service, and failure to properly implement behavior management plans.
                                                                              P&A monitoring responsibilities for the lawsuit’s six named plaintiffs included
                                                                              conducting site visits and reviewing case managers’ reports.c
                                                                              There were 260 individuals with developmental disabilities living in the Embreeville
                                                                              Center when the court certified the class in April 1992, according to a P&A official.

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

                                                                   Note: GAO analyzed settlement agreements and information related to the lawsuits provided by P&As
                                                                   and state developmental disabilities services agency officials.
                                                                   a
                                                                       Settled as a class action lawsuit.
                                                                   b
                                                                    The Coffelt settlement agreement required that the state contract with an independent expert to
                                                                   prepare an annual report that contains certain quality dimensions, including general health and
                                                                   safety, behavioral support services, psychoactive medication usage, quality of home and work
                                                                   settings, independence, productivity, social integration, and opportunity for choice and control. This
                                                                   requirement became part of section 4418.1 of the California Welfare and Institutions Code. A
                                                                   California P&A official stated that the expert’s assessment is based on visits to persons who moved
                                                                   as a result of the settlement, interviews with these persons, and records review.
                                                                   c
                                                                   Case managers are responsible for assessing individuals’ needs, developing a plan of care,
                                                                   arranging for delivery of services, monitoring individuals, and periodically reassessing individuals’
                                                                   needs to modify the care plan as appropriate.


                                                                   For the three lawsuits settled as class actions—Coffelt (California),
                                                                   Richard C. (Pennsylvania), and Nelson (Pennsylvania)—the P&As
                                                                   assumed the role of monitoring some or all class members transferred to
                                                                   community settings. As a result of the Coffelt settlement in 1994, the
                                                                   California P&A has undertaken the role of monitoring individuals using
                                                                   information that the state was required to provide, such as annual reports
                                                                   about quality of life in community settings, based on consumer and family
                                                                   surveys. P&A monitoring responsibilities for Coffelt’s 11 named plaintiffs
                                                                   involved regular communication with these individuals. For Richard C., a
                                                                   Pennsylvania P&A official told us that the P&A role included hiring an
                                                                   advocate to monitor services25 provided to all class members while they


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




                                                                   Page 20                                                       GAO-03-1044 Protection and Advocacy Agencies
were still living at the Western Center and after their placement in
community settings. This advocate was expected to visit each class
member discharged from the Western Center after 1994 at least once. A
P&A official said that monitoring included face-to-face interaction with
class members living at the Western Center or in the community. The P&A
has ongoing responsibility for monitoring several individuals who were
moved from the Western Center to the Ebensburg Center, another state
facility for individuals with mental retardation. For the Nelson lawsuit
settled in 1994, the P&A undertook the responsibility to follow 50 class
members who did not have involved family members, in addition to
monitoring six named plaintiffs. P&As have assumed a role in monitoring
state development and implementation of quality assurance mechanisms
established by all three settlement agreements to improve services
provided in community settings and evaluate services delivered in the
community. Thus, these agreements have long-lasting implications for
state and P&A monitoring activities because implementation of the
settlement agreements may take years to complete.

Of the three other lawsuits we reviewed, one was settled, one was
dismissed, and the third is ongoing litigation. In the settled suit, Richard S.
(California), the P&A did not undertake a monitoring role as a result of
this lawsuit. In this suit, the P&A intervention was intended to overturn
California state policy permitting family member or guardian veto of
community placement decisions, an outcome that did not lead to a P&A
role in monitoring individuals affected by this suit. However, California
P&A officials reported that the P&A had the role of monitoring the 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.




Page 21                             GAO-03-1044 Protection and Advocacy Agencies
                   Parent groups we interviewed had differing views about the role P&As
                   played in monitoring individuals in the five resolved lawsuits we reviewed.
                   Representatives of some parent groups were generally dissatisfied with
                   the adequacy of P&As’ efforts to monitor the health and well-being of
                   individuals transferred to community settings, while representatives of
                   other parent groups, who were generally in favor of these lawsuits,
                   supported P&As’ monitoring approaches. Those parent groups that were
                   dissatisfied said that in supporting states’ “rapid” deinstitutionalization
                   efforts, P&As disregarded parents’ concerns about service quality
                   deficiencies in community settings and the needs of individuals with
                   severe developmental disabilities, who tend to be medically fragile.26 They
                   also stated that P&A staff did not adequately monitor individuals who
                   were moved to community settings. In contrast, representatives of other
                   parent groups generally supported the P&A role in monitoring community
                   placements. For example, a representative of one parent group said that
                   the Maryland P&A collaborated with this group in developing a family
                   guide to community programs for people affected by the Hunt lawsuit.
                   Other parent groups said the Pennsylvania P&A was instrumental in
                   establishing consumer and family satisfaction teams to monitor the quality
                   of services provided to individuals and families affected by the Nelson
                   lawsuit.


                   We provided a draft of this report to ACF and to the California, Maryland,
Agency and Other   and Pennsylvania P&As for their review. ACF said it was a thorough
Comments           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.




                   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).




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

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

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

Children and Families and the Commissioner of the Administration on 

Developmental Disabilities in the Department of Health and Human 

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

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

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

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

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

appendix IV.


Sincerely yours, 





Kathryn G. Allen 

Director, Health Care—Medicaid 

 and Private Health Insurance Issues 





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

              We examined (1) the extent to which Protection and Advocacy agencies
              (P&As) engage in litigation related to deinstitutionalization on behalf of
              individuals with developmental disabilities, (2) how P&As have
              communicated with parents and legal guardians in deinstitutionalization
              lawsuits, and (3) the role, if any, that P&As have played in monitoring the
              health and well-being of individuals transferred from institutions to
              community settings within the context of these lawsuits.

              To determine the extent to which P&As engage in litigation related to
              deinstitionalization on behalf of individuals with developmental
              disabilities, we compared data from several sources and consulted with
              national and state organizations because there is no single, national source
              of information on P&A litigation activities. We analyzed information from
              two key studies that provide extensive information on
              deinstitutionalization lawsuits,1 interviewed the authors of these studies,
              and examined information on lawsuits provided by the National
              Association of Protection & Advocacy Systems, Inc. (NAPAS) and Voice of
              the Retarded (VOR). We also interviewed officials from the Administration
              on Developmental Disabilities (ADD) in the Administration for Children
              and Families in the Department of Health and Human Services (HHS),
              NAPAS, the National Association of State Directors of Developmental
              Disabilities Services, and the VOR; representatives of several other family
              advocacy organizations, including the Arc of the United States; and P&A
              officials in the three states. From these sources, we compiled a national
              list of 24 deinstitutionalization lawsuits confirmed by NAPAS or state
              P&As that P&As filed, joined, or intervened in on behalf of individuals with
              developmental disabilities from 1975 through 2002. (See app. II for a list of
              all 24 cases identified.) From the national list we identified six lawsuits in
              three states—California, Maryland, and Pennsylvania—to study in more
              detail. National organizations that we consulted indicated that these states’
              P&As are more active in deinstitutionalization litigation. In addition, we
              analyzed research on national trends in litigation for institutionalized
              individuals with developmental disabilities, consulted individuals
              knowledgeable about P&A deinstitutionalization lawsuits, and examined




              1
              See Mary F. Hayden, “Civil Rights Litigation for Institutionalized Persons with Mental
              Retardation: A Summary,” Mental Retardation (February 1998) and Gary A. Smith, Status
              Report: Litigation Concerning Medicaid Services for Persons with Developmental and
              Other Disabilities (Tualatin, Ore.: Human Services Research Institute, Jan. 16, 2003).




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




aggregate and state-specific ADD data from 1999 through 2001 on P&A
litigation services provided to this population.2

To determine how P&As communicated with parents and legal guardians
of individuals with developmental disabilities in deinstitutionalization
lawsuits, we focused on the six lawsuits in California, Maryland, and
Pennsylvania. We reviewed class action notification requirements for
plaintiffs in federal and state courts and analyzed settlement agreements
and other documents related to the six lawsuits. We also discussed the
extent of P&A communication with individuals potentially affected by
class action litigation with P&A officials and parent representatives in
these states.

Finally, to determine the role P&As play in monitoring individuals who
have been moved from institutions to community settings, we reviewed
the authority P&As have under the Developmental Disabilities Assistance
and Bill of Rights Act of 2000 to protect and advocate the rights of
individuals with developmental disabilities. We interviewed P&A officials
in the three states about their roles and responsibilities and reviewed
applicable deinstitutionalization settlement agreements and related
documentation that they provided. We also interviewed officials from
these states’ developmental disabilities services agencies who have
primary responsibility for ensuring the quality of services provided to
individuals with developmental disabilities.3 We did not attempt to assess
the effectiveness of P&A and state agencies’ quality monitoring efforts nor
to generalize our study findings to P&As nationwide. We did our work
from October 2002 through September 2003 in accordance with generally
accepted government auditing standards.




2
 ADD does not tabulate the number of client case problems addressed through class action
litigation separately from other types of litigation services. Nonlitigation services ADD
tracks include activities such as mediation, technical assistance, and administrative
hearings.
3
 The state agencies with these responsibilities are the California Department of
Developmental Services, Maryland Developmental Disabilities Administration, and
Pennsylvania’s Department of Public Welfare, Office of Mental Retardation.




Page 25                                  GAO-03-1044 Protection and Advocacy Agencies
Appendix II: P&A Lawsuits Related to
Deinstitutionalization for Individuals with
Developmental Disabilities, 1975–2002

 Case name                                                                                                                                          Year filed State
                                 a
 Evans v. Washington                                                                                                                                       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
                           a
 Nicoletti v. Brown                                                                                                                                        1987 Ohio
 Jackson v. Fort Stanton                                                                                                                                   1987 New Mexico
 Kope v. Watkins                                                                                                                                           1988 Michigan
 Parrent v. Angus                                                                                                                                          1989 Utah
 Martin v. Voinovich                                                                                                                                       1989 Ohio
                                                  b
 Richard C. et al. v. Snider et al.                                                                                                                        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
                                              b
 Hunt et al. v. Meszaros et al.                                                                                                                            1991 Maryland
                                                                                                        b
 Coffelt et al v. California Department of Developmental Services et al.                                                                                   1990 California
                                          b
 Nelson et al. v. Snider et al.                                                                                                                            1994 Pennsylvania
 Travis D. et al. v. Eastmont Human Services Center                                                                                                        1996 Montana
 People First of Washington v. Rainier Residential Habilitation Center                                                                                     1996 Washington
                                                                                                              a, b
 Richard S. et al. v. California Department of Developmental Services et al.                                                                               1997 California
 Brown et al. v. Bush et al.                                                                                                                               1998 Florida
 Capitol People First et al. v. California Department of Developmental Services et al.b                                                                    2002 California
 The Arc of Delaware et al. v. Meconi et al.                                                                                                               2002 Delaware
 McCarthy et al. v. Gilbert et al.                                                                                                                         2002 Texas

Sources: NAPAS; VOR; P&A officials; Mary F. Hayden, “Civil Rights Litigation for Institutionalized Persons with Mental Retardation: A Summary,” Mental Retardation (February 1998); and Gary A. Smith,
Status Report: Litigation Concerning Medicaid Services for Persons with Developmental and Other Disabilities (Tualatin, Ore.: Human Services Research Institute, Jan. 16, 2003).

                                                                  Note: GAO compiled information on the cases in which P&As filed, intervened, or joined from these
                                                                  sources. GAO did not include Michigan Arc v. Smith (1978) because even though the P&A staff did
                                                                  legal work on the suit, the Arc filed the case rather than the P&A.
                                                                  a
                                                                   P&A intervened.
                                                                  b
                                                                   Reviewed by GAO.




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




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




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

                    James C. Musselwhite, (202) 512-7259
GAO Contact
                    In addition to the person named above, key contributors to this report
Acknowledgments 	   were Anne Montgomery, Carmen Rivera-Lowitt, George Bogart, and
                    Elizabeth T. Morrison.




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



              Long-Term Care: Federal Oversight of Growing Medicaid Home and
              Community-Based Waivers Should Be Strengthened. GAO-03-576.
              Washington, D.C.: June 20, 2003.

              Children with Disabilities: Medicaid Can Offer Important Benefits and
              Services. GAO/T-HEHS-00-152. Washington, D.C.: July 12, 2000.

              Mental Health: Improper Restraint or Seclusion Use Places People at
              Risk. GAO/HEHS-99-176. Washington, D.C.: September 7, 1999.

              Adults with Severe Disabilities: Federal and State Approaches for
              Personal Care and Other Services. GAO/HEHS-99-101. Washington, D.C.:
              May 14, 1999.

              Medicaid: Oversight of Institutions for the Mentally Retarded Should Be
              Strengthened. GAO/HEHS-96-131. Washington, D.C.: September 6, 1996.

              Medicaid: Waiver Program for Developmentally Disabled Is Promising
              but Poses Some Risks. GAO/HEHS-96-120. Washington, D.C.: July 22, 1996.




(290240)
              Page 30                          GAO-03-1044 Protection and Advocacy Agencies
                           The General Accounting Office, the audit, evaluation and investigative arm of
GAO’s Mission              Congress, exists to support Congress in meeting its constitutional responsibilities
                           and to help improve the performance and accountability of the federal
                           government for the American people. GAO examines the use of public funds;
                           evaluates federal programs and policies; and provides analyses,
                           recommendations, and other assistance to help Congress make informed
                           oversight, policy, and funding decisions. GAO’s commitment to good government
                           is reflected in its core values of accountability, integrity, and reliability.


                           The fastest and easiest way to obtain copies of GAO documents at no cost is
Obtaining Copies of        through the Internet. GAO’s Web site (www.gao.gov) contains abstracts and full-
GAO Reports and            text files of current reports and testimony and an expanding archive of older
                           products. The Web site features a search engine to help you locate documents
Testimony                  using key words and phrases. You can print these documents in their entirety,
                           including charts and other graphics.
                           Each day, GAO issues a list of newly released reports, testimony, and
                           correspondence. GAO posts this list, known as “Today’s Reports,” on its Web site
                           daily. The list contains links to the full-text document files. To have GAO e-mail
                           this list to you every afternoon, go to www.gao.gov and select “Subscribe to e-mail
                           alerts” under the “Order GAO Products” heading.


Order by Mail or Phone 	   The first copy of each printed report is free. Additional copies are $2 each. A
                           check or money order should be made out to the Superintendent of Documents.
                           GAO also accepts VISA and Mastercard. Orders for 100 or more copies mailed to a
                           single address are discounted 25 percent. Orders should be sent to:
                           U.S. General Accounting Office
                           441 G Street NW, Room LM
                           Washington, D.C. 20548
                           To order by Phone: 	 Voice:      (202) 512-6000
                                                TDD:        (202) 512-2537
                                                Fax:        (202) 512-6061


                           Contact:
To Report Fraud,
                           Web site: www.gao.gov/fraudnet/fraudnet.htm
Waste, and Abuse in        E-mail: fraudnet@gao.gov
Federal Programs           Automated answering system: (800) 424-5454 or (202) 512-7470


                           Jeff Nelligan, Managing Director, NelliganJ@gao.gov (202) 512-4800
Public Affairs 	           U.S. General Accounting Office, 441 G Street NW, Room 7149
                           Washington, D.C. 20548