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

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.