Protection and Advocacy Agencies: Involvement in Deinstitutionalization Lawsuits on Behalf of Individuals with Developmental Disabilities
Released: 2003-10-30T00:00:00

Letter

Background

The Protection and Advocacy system was established in 1975 and was most recently reauthorized in 2000 for 7 years. P&A activities on behalf of individuals with developmental disabilities include legal representation; information and referral services; training and technical assistance in self- advocacy; short-term assistance, mediation and negotiation assistance to obtain benefits and services such as medical care and housing, transportation, and education; representation in administrative appeals; and investigation of reports of abuse and neglect, sexual harassment, inappropriate seclusion and restraint, and other problems. The 57 P&As include 46 that are private, nonprofit agencies; the other 11 are state agencies. P&A staffing typically includes management, investigators, advocates, attorneys, and administrative staff. 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.

Lawsuits Related to Deinstitutionalization Are a Small Part of P&A Activities

Nationwide and for the three states reviewed, lawsuits related to deinstitutionalization on behalf of individuals with developmental disabilities constitute a small part of overall P&A activities. We identified 24 lawsuits nationwide that P&As filed, joined, or intervened in related to deinstitutionalization from 1975 through 2002. P&As filed or intervened in six of these suits in the three states we examined—California, Maryland, and Pennsylvania—during this same period. Three of the six suits were settled as class actions. The three other suits were intended but not settled as class action lawsuits. P&As in these three states reported that they used litigation of all types, including litigation related to deinstitutionalization, in 1.5 percent of client problems they addressed from fiscal years 1999 through 2001.

P&As Filed, Joined, or Intervened in Few Lawsuits Relating to Deinstitutionalization

National data sources indicate that, from 1975 through 2002, P&As filed, joined, or intervened in approximately 24 lawsuits related to deinstitutionalization on behalf of individuals with developmental disabilities. (See app. II.) Most but not all of these lawsuits were intended to be class actions against large public institutions for persons with mental retardation and other developmental disabilities. Moreover, P&As reported that, relative to other activities, they spent a small proportion of staff time on filing class action lawsuits on behalf of individuals with developmental disabilities. Nationally, P&As reported spending about 2 percent of their staff time for this purpose in 2001.

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.

P&As in Three States Used Litigation to Address a Small Percentage of Client Problems

P&As in California, Maryland, and Pennsylvania used litigation infrequently to address client problems according to available data from fiscal years 1999 to 2001. In their annual reports to ADD, P&As in these states reported using litigation to address 272 client problems over the 3- year period, or about 1.5 percent of all problems addressed. (See table 2.) This included litigation on behalf of named plaintiffs in deinstitutionalization litigation, such as class action lawsuits, and other litigation, such as litigation filed on behalf of individuals. By contrast, P&As reported using other services to address 17,947 client problems, more than 98 percent of all problems addressed. These services include contacting state officials for individuals in need of services such as health care, negotiation and mediation help, technical assistance in self- advocacy, and representation at administrative hearings.

P&As’ Communications in Three States Were Consistent with Federal Rules but Not as Comprehensive as Some Parents Desired

P&As in the three states communicated with parents and guardians as required by federal rules in the lawsuits we reviewed. In the three cases settled as class actions, P&As provided notice to all class members at the time settlement was proposed to the court, as required by federal rules. Such notice was not required in the other three cases we reviewed, which were not class actions. Even though P&As provided the notice required by federal rules in the lawsuits we examined, representatives of some parent groups told us they believed that P&As should have communicated with parents and guardians before filing or intervening in these lawsuits and prior to class certification by the court. P&As in the three states reviewed indicated that they did not try to communicate with all individuals potentially affected by the six lawsuits, including parents and guardians, but did communicate with organizations representing some parents and guardians during these stages of the lawsuits. However, even if P&As had provided notification during the stages specified by the parents and guardians, under the applicable federal rule of civil procedure an individual has no explicit right to opt out of a class in this type of case.

P&As Complied with Requirement to Provide Notice to All Class Members Prior to a Court’s Approval of a Settlement Agreement

In the three class action lawsuits we reviewed, P&As complied with FRCP Rule 23, which requires communication with all class members prior to settlement. Two of these lawsuits were filed and settled in federal district court, where the FRCP applied directly, and one lawsuit was filed and settled in California superior court, where, under prevailing law at that time, the judge applied the FRCP.

FRCP Rule 23 does not require notification of class members prior to class certification in lawsuits seeking injunctive relief, the type of lawsuits generally brought by P&As, although such notice is required in class action lawsuits seeking monetary damages. However, FRCP Rule 23 does require notification at the time of proposed settlement for all class action lawsuits—including those seeking injunctive relief. It specifies that such notice “shall be given to all members of the class in such manner as the court directs.” 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.

P&As’ Communication Was Not as Comprehensive as Some Parents Desired

P&As’ communication before a settlement was proposed to the court was not as comprehensive as some parents desired in the lawsuits we reviewed. Representatives of some parent groups told us they were not satisfied with the extent of P&A communication because they believed that P&As should have communicated with parents and guardians in the six lawsuits we examined before filing or intervening in the suits and prior to class certification by the court. P&A officials in California, Maryland, and Pennsylvania told us that they did not try to communicate with all individuals, including parents and guardians, potentially affected by the six lawsuits until a settlement was proposed to the court. However, P&As were not required to provide such communication. In a discussion with NAPAS, the national organization representing P&As, an official told us that for P&As to attempt to contact all such individuals would require considerable time and expense, which would make providing such notice extremely difficult. Furthermore, he said that P&As would not generally wish to provide such notice unless required to do so because this could provide defendants with information they might use to oppose litigation.

Nevertheless, P&A officials said that they met or attempted to meet with organizations representing some parents and guardians of affected individuals during the lawsuits. 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.

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

P&As assumed various roles in monitoring the health and well-being of individuals with developmental disabilities transferred from institutions to community settings in four of five lawsuits we reviewed in California, Maryland, and Pennsylvania that had been resolved. (See table 3.) No P&A monitoring role has been established in the sixth suit we reviewed, in which litigation is ongoing. In these three states, P&A roles and responsibilities varied with the circumstances of the lawsuits and initiatives P&As undertook as part of their general role to protect and advocate the rights of individuals with developmental disabilities. State developmental disabilities services agencies, however, continue to have the primary responsibility for ensuring the health and well-being of individuals, including monitoring these individuals when they receive services in the community. Representatives of some parent groups told us that parents and guardians have been dissatisfied with the adequacy of P&As’ monitoring role in community placements, while representatives of other parent groups told us they generally supported the P&A monitoring role.

With respect to the three lawsuits filed and settled as class actions, the settlement agreements did not specify a monitoring role for the P&As, but the P&As assumed specific roles in monitoring individuals transferred to the community. Regarding the other three lawsuits not settled as class actions, the P&A also undertook a role in monitoring affected individuals in one of these suits. P&As are not playing a monitoring role in the other two suits—in one because of the nature of the suit, and in the other because litigation is ongoing.

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.

Agency and Other Comments

We provided a draft of this report to ACF and to the California, Maryland, and Pennsylvania P&As for their review. ACF said it was a thorough analysis of the three P&As’ involvement in deinstitutionaliation lawsuits for the population examined. ACF’s written comments are in appendix III. The three P&As stated that the report is accurate, and provided technical comments. We incorporated technical comments as appropriate.

As agreed with your office, unless you publicly announce its contents earlier, we plan no further distribution of this report until 30 days after its issue date. At that time, we will send copies to the Assistant Secretary for Children and Families and the Commissioner of the Administration on Developmental Disabilities in the Department of Health and Human Services, interested congressional committees, and other parties. We will also make copies available to others on request. In addition, the report will be available at no charge on the GAO Web site at http://www.gao.gov. If you or your staff have any questions about this report, please call me at (202) 512-7118. Another contact and key contributors are listed in appendix IV.

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, 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.

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

The Arc of Delaware et al. v. Meconi et al.

P&A intervened.

Reviewed by GAO.

Appendix IV: GAO Contact and Staff Acknowledgments

GAO Contact

Acknowledgments

In addition to the person named above, key contributors to this report were Anne Montgomery, Carmen Rivera-Lowitt, George Bogart, and Elizabeth T. Morrison.

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