Protection and Advocacy Agencies: Involvement in Deinstitutionalization Lawsuits on Behalf of Individuals with Developmental Disabilities
Published: 2003-09-30T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: Congress established the Protection and Advocacy system in 1975 to protect the rights of individuals with developmental disabilities, most of whom have mental retardation. Protection and Advocacy agencies (P&A) use investigative and legal activities to advocate on behalf of these individuals. Deinstitutionalization has refocused delivery of care to this population over the last several decades from large public institutions to community settings. Refocusing service delivery resulted from (1) the desire to deliver care in the most integrated setting and to control costs and (2) the outcomes of deinstitutionalization lawsuits brought by P&As and others. Some parents have raised concerns that P&As emphasize these suits over other activities, inadequately inform them of family members' inclusion in the suits, and do not adequately monitor individuals after their transfer to the community. GAO was asked to review the extent to which P&As engage in lawsuits related to deinstitutionalization of these individuals, how P&As communicate with affected parents and guardians in these suits, and the role P&As have played in monitoring the well-being of individuals transferred to the community. GAO compiled a national list of lawsuits related to deinstitutionalization involving P&As and reviewed the suits and related activities in three states--California, Maryland, and Pennsylvania.
section_title: What GAO Found
paragraphs: 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.

section_title: Letter
paragraphs: 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. In  fiscal year 2002, the 57 Protection and Advocacy agencies (P&A) received  $35 million in federal funding for this purpose. To advocate on behalf of  individuals with developmental disabilities, P&As undertake a range of  administrative, information and referral, investigative, and legal activities.  These activities can include representing individuals with developmental  disabilities in lawsuits. Some of these lawsuits have resulted in moving  individuals with developmental disabilities from institutional care settings  to care settings in the community such as group homes and apartments, a  process that is referred to as deinstitutionalization. Some parents and legal  guardians of individuals involved in these suits have supported P&A  efforts in bringing these suits and implementing the settlements that have  resulted. Other parents and guardians of individuals affected by these  suits, however, have organized to oppose the suits and the implementation  of certain aspects of court-approved settlements because of concerns they  have regarding the care of their family members.
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. 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. 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. The largest source of public funding for these institutional  and community services is Medicaid, the federal-state program that  finances health care coverage for certain low-income and disabled  populations. State developmental disabilities services agencies administer  most of the services provided to this population and have primary  responsibility for monitoring these services in institutions and in  community settings.
In advocating on behalf of individuals with developmental disabilities in  institutions, P&As and others have filed, joined, or intervened in lawsuits  relating to deinstitutionalization. Some of these lawsuits have been class  action lawsuits on behalf of classes of individuals. Deinstitutionalization  lawsuits brought against large, public institutions have alleged  inappropriate care and treatment, including abuse and neglect of  residents, and breaches of statutory and constitutional rights. Some of  these suits have lasted for years, and the courts’ decisions have sometimes  taken additional years to implement after the cases have been decided.  Some parents opposing these P&A efforts have expressed concerns that  P&As emphasize deinstitutionalization lawsuits over other activities; that  P&As do not adequately communicate with parents and guardians of  individuals potentially affected by these lawsuits, such as notifying them  of the inclusion of their family members in the suits; and that P&As do not  assume adequate monitoring roles for the health and well-being of  individuals moved from institutions to community settings in such suits.
Because of these concerns, you asked us to review certain P&A activities.  We examined (1) the extent to which P&As engage in litigation related to  deinstitutionalization on behalf of individuals with developmental  disabilities, (2) how P&As have communicated with parents and legal  guardians in deinstitutionalization lawsuits, and (3) the role, if any, that  P&As have played in monitoring the health and well-being of individuals  transferred from institutions to community settings within the context of  these lawsuits.
To examine the extent to which P&As engage in litigation related to  deinstitutionalization on behalf of individuals with developmental  disabilities, we analyzed several data sources and consulted with national  and state organizations because there is no single, national source of  information on P&A litigation activities. We contacted the Administration  on Developmental Disabilities (ADD), within the Administration for  Children and Families (ACF), Department of Health and Human Services  (HHS), which administers the Developmental Disabilities Assistance and  Bill of Rights Act of 2000 (DD Act); the National Association of Protection  & Advocacy Systems, Inc. (NAPAS), which represents P&As; the National  Association of State Directors of Developmental Disabilities Services,  which represents state developmental disabilities services agencies; and  representatives of family advocacy organizations including Voice of the  Retarded (VOR) and the Arc of the United States. From these sources, we  compiled a national list of lawsuits related to deinstitutionalization that  P&As filed, joined, or intervened in on behalf of individuals with  developmental disabilities from 1975 through 2002. To examine P&A  activities more closely, we chose three states—California, Maryland, and  Pennsylvania—that national organizations we consulted indicated are  among the states with P&As that are more active in deinstitutionalization  litigation. We examined all six lawsuits regarding deinstitutionalization in  these three states that were in the national list of lawsuits we developed.  To obtain information on P&A communication with parents and guardians  in these three states, we interviewed P&A officials, representatives of state  developmental disabilities services agencies, and representatives of parent  groups. In addition, we reviewed federal and relevant state rules of civil  procedure 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.)
subsections: section_title: Background
paragraphs: The Protection and Advocacy system was established in 1975 and was  most recently reauthorized in 2000 for 7 years. P&A activities on behalf of  individuals with developmental disabilities include legal representation;  information and referral services; training and technical assistance in self- advocacy; short-term assistance, mediation and negotiation assistance to  obtain benefits and services such as medical care and housing,  transportation, and education; representation in administrative appeals;  and investigation of reports of abuse and neglect, sexual harassment,  inappropriate seclusion and restraint, and other problems. The 57 P&As  include 46 that are private, nonprofit agencies; the other 11 are state  agencies. P&A staffing typically includes management, investigators,  advocates, attorneys, and administrative staff. 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.
Although state developmental disabilities services agencies are primarily  responsible for arranging for the provision of services and oversight of  quality for services received by individuals with developmental disabilities,  the DD Act authorizes P&As to play an important role in monitoring these  services. The DD Act authorizes P&As to investigate allegations of abuse  and neglect when reported or if there is probable cause to believe that  incidents occurred and to pursue legal, administrative, and other  appropriate remedies or approaches on behalf of individuals with  developmental disabilities. The act grants P&As access to individuals with  developmental disabilities and to their records, including reports prepared  by agencies or staff on injuries or deaths. Under this authority, P&As  typically undertake monitoring efforts to review the adequacy of services  that individuals receive in institutions and in community settings and to  examine state oversight of quality assurance and regulatory compliance  for residential services providers.
Many individuals with developmental disabilities for whom P&As advocate  are eligible to receive publicly financed residential services through  Medicaid, which is the largest source of funds for services for individuals  with developmental disabilities. State developmental disabilities services  agencies have primary responsibility for monitoring the quality of services  provided to individuals with developmental disabilities, including those  services funded by Medicaid. In 2002, Medicaid financed 77 percent  ($26.8 billion) of the total $34.7 billion in total long-term care spending on  individuals with developmental disabilities. Medicaid spending was about  $10.9 billion for ICF/MR residents including those living in large  institutions; 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.
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. For both the ICF/MR and waiver  programs, protecting the health and welfare of Medicaid-covered  individuals receiving services is a shared federal-state responsibility.  Under the ICF/MR optional benefit program, states annually inspect  institutions to ensure that they meet federal quality standards. Under  Medicaid waivers, states must include assurances to CMS that necessary  safeguards are in place to protect beneficiaries.
In pursuing legal remedies on behalf of individuals with developmental  disabilities, P&As have represented individuals as well as groups or  classes of individuals in lawsuits. All such lawsuits are subject to rules of  procedure that govern proceedings in the relevant court. Many of these  cases take place in federal court, where the Federal Rules of Civil  Procedure (FRCP) apply. FRCP Rule 23 establishes procedural  requirements for class action lawsuits in federal district court, including  the circumstances under which individuals must be notified of their  inclusion in a class prior to class formation, referred to as certification by  the court, and notified of proposed settlements of lawsuits on their behalf.  The requirements vary depending upon whether the suit is for injunctive  relief or monetary damages. Lawsuits for injunctive relief seek a court  order requiring another party to do or refrain from doing a specified act.  For suits seeking injunctive relief, the type of class action suit P&As  generally bring, the rule does not require notification of individuals’  inclusion in a class prior to class formation. 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.
section_title: Lawsuits Related to Deinstitutionalization Are a Small Part of P&A Activities
paragraphs: Nationwide and for the three states reviewed, lawsuits related to  deinstitutionalization on behalf of individuals with developmental  disabilities constitute a small part of overall P&A activities. We identified  24 lawsuits nationwide that P&As filed, joined, or intervened in related to  deinstitutionalization from 1975 through 2002. P&As filed or intervened in  six of these suits in the three states we examined—California, Maryland,  and Pennsylvania—during this same period. Three of the six suits were  settled as class actions. The three other suits were intended but not settled  as class action lawsuits. P&As in these three states reported that they used  litigation of all types, including litigation related to deinstitutionalization,  in 1.5 percent of client problems they addressed from fiscal years 1999  through 2001.
subsections: section_title: P&As Filed, Joined, or Intervened in Few Lawsuits Relating to Deinstitutionalization
paragraphs: National data sources indicate that, from 1975 through 2002, P&As filed,  joined, or intervened in approximately 24 lawsuits related to  deinstitutionalization on behalf of individuals with developmental  disabilities. (See app. II.) Most but not all of these lawsuits were intended  to be class actions against large public institutions for persons with mental  retardation and other developmental disabilities. Moreover, P&As reported  that, relative to other activities, they spent a small proportion of staff time  on filing class action lawsuits on behalf of individuals with developmental  disabilities. Nationally, P&As reported spending about 2 percent of their  staff time for this purpose in 2001.
From 1975 through 2002, P&As in the three states we reviewed filed or  intervened in six lawsuits related to deinstitutionalization on behalf of  individuals with developmental disabilities. (See table 1.) Of the six  lawsuits, four were brought in federal court and two were brought in state  court. Three of these suits were settled as class action lawsuits. The other  three suits were intended as class actions but not certified as such by their  respective courts. Of these three, one in Maryland was dismissed by  mutual agreement of the parties, one in California was settled by a  multiparty agreement, and another in California is pending. Although most  of the suits were settled a number of years ago, the impact of the suits can  be ongoing. For example, the Nelson v. Snider suit in Pennsylvania was  settled in 1994 but was part of the impetus for closing the Embreeville  Center in 1998.
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.
section_title: P&As in Three States Used Litigation to Address a Small Percentage of Client Problems
paragraphs: P&As in California, Maryland, and Pennsylvania used litigation  infrequently to address client problems according to available data from  fiscal years 1999 to 2001. In their annual reports to ADD, P&As in these  states reported using litigation to address 272 client problems over the 3- year period, or about 1.5 percent of all problems addressed. (See table 2.)  This included litigation on behalf of named plaintiffs in  deinstitutionalization litigation, such as class action lawsuits, and other  litigation, such as litigation filed on behalf of individuals. By contrast,  P&As reported using other services to address 17,947 client problems,  more than 98 percent of all problems addressed. These services include  contacting state officials for individuals in need of services such as health  care, negotiation and mediation help, technical assistance in self- advocacy, and representation at administrative hearings.
section_title: P&As’ Communications in Three States Were Consistent with Federal Rules but Not as Comprehensive as Some Parents Desired
paragraphs: P&As in the three states communicated with parents and guardians as  required by federal rules in the lawsuits we reviewed. In the three cases  settled as class actions, P&As provided notice to all class members at the  time settlement was proposed to the court, as required by federal rules.  Such notice was not required in the other three cases we reviewed, which  were not class actions. Even though P&As provided the notice required by  federal rules in the lawsuits we examined, representatives of some parent  groups told us they believed that P&As should have communicated with  parents and guardians before filing or intervening in these lawsuits and  prior to class certification by the court. P&As in the three states reviewed  indicated that they did not try to communicate with all individuals  potentially affected by the six lawsuits, including parents and guardians,  but did communicate with organizations representing some parents and  guardians during these stages of the lawsuits. However, even if P&As had  provided notification during the stages specified by the parents and  guardians, under the applicable federal rule of civil procedure an  individual has no explicit right to opt out of a class in this type of case.
subsections: section_title: P&As Complied with Requirement to Provide Notice to All Class Members Prior to a Court’s Approval of a Settlement Agreement
paragraphs: In the three class action lawsuits we reviewed, P&As complied with FRCP  Rule 23, which requires communication with all class members prior to  settlement. Two of these lawsuits were filed and settled in federal district  court, where the FRCP applied directly, and one lawsuit was filed and  settled in California superior court, where, under prevailing law at that  time, the judge applied the FRCP.
FRCP Rule 23 does not require notification of class members prior to class  certification in lawsuits seeking injunctive relief, the type of lawsuits  generally brought by P&As, although such notice is required in class action  lawsuits seeking monetary damages. However, FRCP Rule 23 does require  notification at the time of proposed settlement for all class action  lawsuits—including those seeking injunctive relief. It specifies that such  notice “shall be given to all members of the class in such manner as the  court directs.” This notice guarantees that unnamed class members will  receive notice of any proposed settlement and have an opportunity to  register objections with the court, thereby assisting the court in  determining whether the proposed settlement is fair, adequate, and  reasonable. 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.
section_title: P&As’ Communication Was Not as Comprehensive as Some Parents Desired
paragraphs: P&As’ communication before a settlement was proposed to the court was  not as comprehensive as some parents desired in the lawsuits we  reviewed. Representatives of some parent groups told us they were not  satisfied with the extent of P&A communication because they believed  that P&As should have communicated with parents and guardians in the  six lawsuits we examined before filing or intervening in the suits and prior  to class certification by the court. P&A officials in California, Maryland,  and Pennsylvania told us that they did not try to communicate with all  individuals, including parents and guardians, potentially affected by the six  lawsuits until a settlement was proposed to the court. However, P&As  were not required to provide such communication. In a discussion with  NAPAS, the national organization representing P&As, an official told us  that for P&As to attempt to contact all such individuals would require  considerable time and expense, which would make providing such notice  extremely difficult. Furthermore, he said that P&As would not generally  wish to provide such notice unless required to do so because this could  provide defendants with information they might use to oppose litigation.
Nevertheless, P&A officials said that they met or attempted to meet with  organizations representing some parents and guardians of affected  individuals during the lawsuits. The context of the meetings varied with  the circumstances of the six lawsuits. For example, a California P&A  official indicated that, both before and after filing the Coffelt lawsuit in  1990, the P&A met with organizations representing the parents and  guardians of residents of at least three of the institutions affected. In the  other two California lawsuits, Richard S. (1997) and Capitol People First  (2002), a California P&A official indicated that the P&A met with and  represented organizations whose members included the families of  institutional residents, and met with individual family members before and  during the litigation. The P&A did not, however, meet with parent  organizations specifically associated with the institutions. In both of those  lawsuits, the organizations specifically associated with the institutions  were or are involved as parties, thus complicating direct communication  between the P&A and parents and guardians who might belong to these  organizations. 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. A Pennsylvania P&A official said that the P&A  tried unsuccessfully to meet with an organization representing parents and  guardians of Western Center residents prior to filing the Richard C. v.  Snider lawsuit (1989) and that such efforts were complicated by another  lawsuit filed against the P&A by that organization. Representatives of  some parent groups, however, told us that P&A communication  concerning the lawsuits with parents and guardians of affected individuals  was limited.
Three of the six lawsuits we examined—Nelson v. Snider, Richard. C. v.  Snider, and Coffelt v. California Department of Developmental  Services—were certified by the courts as class actions. The P&As  indicated that they did not attempt to notify all prospective class members  prior to certification of their classes by the court for the reasons discussed  above. P&As told us they maintained regular contact with all named  plaintiffs in the lawsuits. Representatives of some parent groups said that  parents and guardians of individuals affected as unnamed class members  in the lawsuits had insufficient opportunity to express their views about  the inclusion of their adult children in the class and were not notified that  their children might be included until the settlement was proposed to the  court. As a result, some individuals may have been included in class  actions even though they or their parents or guardians opposed their  inclusion. As a matter of law, however, these individuals would have had  limited influence even if they had been able to express their views. In class  action suits seeking injunctive relief, such as the three we examined, the  court focuses on the circumstances of the class as a whole as opposed to  those affecting individual members. 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.
section_title: P&As in the Three States Assumed Various Roles in Monitoring Individuals Transferred to Community Settings
paragraphs: P&As assumed various roles in monitoring the health and well-being of  individuals with developmental disabilities transferred from institutions to  community settings in four of five lawsuits we reviewed in California,  Maryland, and Pennsylvania that had been resolved. (See table 3.) No P&A  monitoring role has been established in the sixth suit we reviewed, in  which litigation is ongoing. In these three states, P&A roles and  responsibilities varied with the circumstances of the lawsuits and  initiatives P&As undertook as part of their general role to protect and  advocate the rights of individuals with developmental disabilities. State  developmental disabilities services agencies, however, continue to have  the primary responsibility for ensuring the health and well-being of  individuals, including monitoring these individuals when they receive  services in the community. Representatives of some parent groups told us  that parents and guardians have been dissatisfied with the adequacy of  P&As’ monitoring role in community placements, while representatives of  other parent groups told us they generally supported the P&A monitoring  role.
With respect to the three lawsuits filed and settled as class actions, the  settlement agreements did not specify a monitoring role for the P&As, but  the P&As assumed specific roles in monitoring individuals transferred to  the community. Regarding the other three lawsuits not settled as class  actions, the P&A also undertook a role in monitoring affected individuals  in one of these suits. P&As are not playing a monitoring role in the other  two suits—in one because of the nature of the suit, and in the other  because litigation is ongoing.
For the three lawsuits settled as class actions—Coffelt (California),  Richard C. (Pennsylvania), and Nelson (Pennsylvania)—the P&As  assumed the role of monitoring some or all class members transferred to  community settings. As a result of the Coffelt settlement in 1994, the  California P&A has undertaken the role of monitoring individuals using  information that the state was required to provide, such as annual reports  about quality of life in community settings, based on consumer and family  surveys. P&A monitoring responsibilities for Coffelt’s 11 named plaintiffs  involved regular communication with these individuals. For Richard C., a  Pennsylvania P&A official told us that the P&A role included hiring an  advocate to monitor services provided to all class members while they  were still living at the Western Center and after their placement in  community settings. This advocate was expected to visit each class  member discharged from the Western Center after 1994 at least once. A  P&A official said that monitoring included face-to-face interaction with  class members living at the Western Center or in the community. The P&A  has ongoing responsibility for monitoring several individuals who were  moved from the Western Center to the Ebensburg Center, another state  facility for individuals with mental retardation. For the Nelson lawsuit  settled in 1994, the P&A undertook the responsibility to follow 50 class  members who did not have involved family members, in addition to  monitoring six named plaintiffs. P&As have assumed a role in monitoring  state development and implementation of quality assurance mechanisms  established by all three settlement agreements to improve services  provided in community settings and evaluate services delivered in the  community. Thus, these agreements have long-lasting implications for  state and P&A monitoring activities because implementation of the  settlement agreements may take years to complete.
Of the three other lawsuits we reviewed, one was settled, one was  dismissed, and the third is ongoing litigation. In the settled suit, Richard S.  (California), the P&A did not undertake a monitoring role as a result of  this lawsuit. In this suit, the P&A intervention was intended to overturn  California state policy permitting family member or guardian veto of  community placement decisions, an outcome that did not lead to a P&A  role in monitoring individuals affected by this suit. However, California  P&A officials reported that the P&A had the role of monitoring the well- being of all individuals who moved from institutions to the community,  including individuals affected by the Richard S. suit, based on the role  assumed by the P&A in the Coffelt case. In the dismissed suit Hunt  (Maryland), the P&A undertook a certain role to monitor plaintiffs and  other affected individuals. The Hunt lawsuit was dismissed in 1999  following closure of the Great Oaks Center in 1996. However, the P&A and  Arc of Maryland officials reported having a role in assisting families of  individuals who had problems with community placements. Finally,  California’s Capitol People First (filed in 2002) is in the early stages of  litigation and has not yet addressed a P&A monitoring role.
Parent groups we interviewed had differing views about the role P&As  played in monitoring individuals in the five resolved lawsuits we reviewed.  Representatives of some parent groups were generally dissatisfied with  the adequacy of P&As’ efforts to monitor the health and well-being of  individuals transferred to community settings, while representatives of  other parent groups, who were generally in favor of these lawsuits,  supported P&As’ monitoring approaches. Those parent groups that were  dissatisfied said that in supporting states’ “rapid” deinstitutionalization  efforts, P&As disregarded parents’ concerns about service quality  deficiencies in community settings and the needs of individuals with  severe developmental disabilities, who tend to be medically fragile. 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.
section_title: Agency and Other Comments
paragraphs: We provided a draft of this report to ACF and to the California, Maryland,  and Pennsylvania P&As for their review. ACF said it was a thorough  analysis of the three P&As’ involvement in deinstitutionaliation lawsuits  for the population examined. ACF’s written comments are in appendix III.  The three P&As stated that the report is accurate, and provided technical  comments. We incorporated technical comments as appropriate.
As agreed with your office, unless you publicly announce its contents  earlier, we plan no further distribution of this report until 30 days after its  issue date. At that time, we will send copies to the Assistant Secretary for  Children and Families and the Commissioner of the Administration on  Developmental Disabilities in the Department of Health and Human  Services, interested congressional committees, and other parties. We will  also make copies available to others on request. In addition, the report will  be available at no charge on the GAO Web site at http://www.gao.gov. If  you or your staff have any questions about this report, please call me at  (202) 512-7118. Another contact and key contributors are listed in  appendix IV.
section_title: Appendix I: Objectives, Scope, and Methodology
paragraphs: 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, interviewed the authors of these studies,  and examined information on lawsuits provided by the National  Association of Protection & Advocacy Systems, Inc. (NAPAS) and Voice of  the Retarded (VOR). We also interviewed officials from the Administration  on Developmental Disabilities (ADD) in the Administration for Children  and Families in the Department of Health and Human Services (HHS),  NAPAS, the National Association of State Directors of Developmental  Disabilities Services, and the VOR; representatives of several other family  advocacy organizations, including the Arc of the United States; and P&A  officials in the three states. From these sources, we compiled a national  list of 24 deinstitutionalization lawsuits confirmed by NAPAS or state  P&As that P&As filed, joined, or intervened in on behalf of individuals with  developmental disabilities from 1975 through 2002. (See app. II for a list of  all 24 cases identified.) From the national list we identified six lawsuits in  three states—California, Maryland, and Pennsylvania—to study in more  detail. National organizations that we consulted indicated that these states’  P&As are more active in deinstitutionalization litigation. In addition, we  analyzed research on national trends in litigation for institutionalized  individuals with developmental disabilities, consulted individuals  knowledgeable about P&A deinstitutionalization lawsuits, and examined  aggregate and state-specific ADD data from 1999 through 2001 on P&A  litigation services provided to this population.
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. 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.
section_title: Appendix II: P&A Lawsuits Related to Deinstitutionalization for Individuals with Developmental Disabilities, 1975–2002
subsections: section_title: The Arc of Delaware et al. v. Meconi et al.
paragraphs: P&A intervened.
Reviewed by GAO.
section_title: Appendix IV: GAO Contact and Staff Acknowledgments
subsections: section_title: GAO Contact
section_title: Acknowledgments
paragraphs: In addition to the person named above, key contributors to this report  were Anne Montgomery, Carmen Rivera-Lowitt, George Bogart, and  Elizabeth T. Morrison.
section_title: Related GAO Products
paragraphs: 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.