Protection and Advocacy Agencies: Involvement in Deinstitutionalization Lawsuits on Behalf of Individuals with Developmental Disabilities Page: 2 of 35
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SAccountability- Integrity- Reliability
Highlights of GAO-03-1044, a report to the
Chairman, Subcommittee on Oversight
and Investigations, Committee on Energy
and Commerce, House of Representatives
Why GAO Did This Study
Congress established the
Protection and Advocacy system in
1975 to protect the rights of
individuals with developmental
disabilities, most of whom have
mental retardation. Protection and
Advocacy agencies (P&A) use
investigative and legal activities to
advocate on behalf of these
has refocused delivery of care to
this population over the last several
decades from large public
institutions to community settings.
Refocusing service delivery
resulted from (1) the desire to
deliver care in the most integrated
setting and to control costs and
(2) the outcomes of
brought by P&As and others. Some
parents have raised concerns that
P&As emphasize these suits over
other activities, inadequately
inform them of family members'
inclusion in the suits, and do not
adequately monitor individuals
after their transfer to the
community. GAO was asked to
review the extent to which P&As
engage in lawsuits related to
deinstitutionalization of these
individuals, how P&As
communicate with affected parents
and guardians in these suits, and
the role P&As have played in
monitoring the well-being of
individuals transferred to the
community. GAO compiled a
national list of lawsuits related to
P&As and reviewed the suits and
related activities in three states-
California, Maryland, and
To view the full product, including the scope
and methodology, click on the link above.
For more information, contact Kathryn G.
Allen at (202) 512-7118.
PROTECTION AND ADVOCACY
Involvement in Deinstitutionalization
Lawsuits on Behalf of Individuals with
What GAO Found
Lawsuits related to deinstitutionalization brought on behalf of persons with
developmental disabilities are a small part of P&As' overall activities for this
population. GAO identified 24 such lawsuits that P&As filed, joined, or
intervened in from 1975 through 2002. During the same period, P&As filed or
intervened in 6 of these lawsuits in the three states GAO reviewed-
California, Maryland, and Pennsylvania. Three of the 6 were settled as class
actions; the other 3 were intended, but not settled, as class actions. One is
ongoing, one was dismissed, and one was settled by multiparty agreement.
P&As' communications with parents and guardians regarding the lawsuits in
the three states were consistent with federal rules. For the three suits
settled as class actions, P&As complied with the requirement to provide
notice to all class members when a settlement agreement is proposed to the
court. Such notice was not required in the other three cases, which were not
class actions. Representatives of some parent groups told GAO that parents
and guardians were dissatisfied with the extent of P&A communication with
them before a settlement was proposed, citing problems such as not
receiving notice of a family member's inclusion in the class, which the parent
or guardian opposed. P&As in the three states told GAO they did not
communicate with every person potentially affected by the six lawsuits
before a proposed settlement agreement, although they did communicate
with organizations representing some parents and guardians during that
time. However, even if P&As had made such notification, under the
applicable federal rule of civil procedure, an individual has no explicit right
to opt out of the class in this type of case.
P&As in the three states assumed various roles in monitoring the health and
well-being of individuals transferred to community settings in four of the five
resolved lawsuits we reviewed, although state developmental disabilities
services agencies have the primary responsibility for ensuring the quality of
services provided to these individuals. P&As' roles varied with the
circumstances of the lawsuits and the initiatives P&As in the three states
undertook using their authority to protect and advocate the rights of
individuals with developmental disabilities. For example, although the three
class action settlement agreements did not specify monitoring roles, the
P&As assumed roles, such as reviewing information about the quality of
community services that the settlement agreements required the states to
develop and reviewing care plans of individuals who had been transferred.
Representatives of some parent groups told GAO that parents and guardians
have been dissatisfied with the adequacy of the P&As' monitoring role in
community placements, while representatives of other parent groups said
they generally supported the P&A monitoring role.
The Administration for Children and Families said GAO's analysis of the
three P&As' involvement in deinstitutionalization lawsuits is thorough and
the P&As GAO reviewed said that the report is accurate.
United States General Accounting Office
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United States. General Accounting Office. Protection and Advocacy Agencies: Involvement in Deinstitutionalization Lawsuits on Behalf of Individuals with Developmental Disabilities, report, September 30, 2003; Washington D.C.. (digital.library.unt.edu/ark:/67531/metadc291066/m1/2/: accessed January 22, 2019), University of North Texas Libraries, Digital Library, digital.library.unt.edu; crediting UNT Libraries Government Documents Department.