Most people with mental retardation, cerebral palsy, epilepsy, or other developmental disabilities who reside in large public institutions have many cognitive, physical, and functional impairments. Because their impairments often limit their ability to communicate concerns and many lack family members to advocate on their behalf, they are highly vulnerable to abuse, neglect, or other forms of mistreatment. As of 1994, more than 80 percent of residents in large public institutions were diagnosed as either severely or profoundly retarded. More than half of all residents cannot communicate verbally and require help with such basic activities as eating, dressing, and using the toilet. In addition, nearly half of all residents have behavioral disorders and require special staff attention, and almost one-third require the attention of psychiatric specialists. The Congress established the ICF/MR program as an optional Medicaid benefit in 1971 to respond to evidence of widespread neglect of the developmentally disabled in state institutions, many of which provided little more than custodial care. The program provides federal Medicaid funds to states in exchange for their institutions’ meeting minimum federal requirements for a safe environment, appropriate active treatment, and qualified professional staff. In 1994, more than 62,000 developmentally disabled individuals lived in 434 large public institutions certified as ICFs/MR for participation in Medicaid. States operated 392 of these institutions; county and city governments operated 42. The average number of beds in each facility was 170, though facilities range in size from 16 beds to more than 1,000 beds. These institutions provided services on a 24-hour basis as needed. Services included medical and nursing services, physical and occupational therapy, psychological services, recreational and social services, and speech and audiology services. Compared with residents in years past, those in large public institutions today are older and more medically fragile and have more complex behavioral and psychiatric disorders. In recent years, states have reduced the number of people living in these large public ICFs/MR by housing them in smaller, mostly private ICFs/MR and other community residential settings. Large public institutions generally are not accepting many new admissions, and many states have been closing or downsizing their large institutions. HCFA published final regulations for quality of care in ICFs/MR in 1974 and revised them in 1988. To be certified to participate in Medicaid, ICFs/MR must meet eight conditions of participation (CoP) contained in federal regulations. The regulations are designed to protect the health and safety of residents and ensure that they are receiving active treatment for their disability and not merely custodial care. Each CoP encompasses a broad range of discrete standards that HCFA determined were essential to a well-run facility. The CoPs cover most areas of facility operation, including administration, minimum staffing requirements, provision of active treatment services, health care services, and physical plant requirements. (See app. II for a more detailed description of the ICF/MR CoPs.) The eight CoPs comprise 378 specific standards and elements. HCFA requires that states conduct annual on-site inspections of ICFs/MR to assess the quality of care provided and to certify that they continue to meet federal standards for Medicaid participation. The state health department usually serves as the survey agency. These agencies may also conduct complaint surveys at any time during the year in response to specific allegations of unsafe conditions or deficient care. If the surveyors identify deficiencies, the institution must submit a plan of correction to the survey agency and correct—or show substantial progress toward correcting—any deficiency within a specified time period. For serious deficiencies, those cited as violating the CoPs, HCFA requires that the institution be terminated from Medicaid participation within 90 days unless corrections are made and verified by the survey agency during a follow-up visit. If a facility meets all eight CoPs but has deficiencies in one or more of the standards or elements, it may have up to 12 months to achieve compliance as long as the deficiency does not immediately jeopardize residents’ health and safety. HCFA’s 10 regional offices oversee state implementation of Medicaid ICF/MR regulations by monitoring state efforts to ensure that ICFs/MR comply with the regulations. HCFA regional office staff directly survey some ICFs/MR—primarily to monitor the performance of state survey agencies. In addition, regional office staff provide training, support, and consultation to state agency surveyors. The Department of Justice also has a role in overseeing public institutions for people with developmental disabilities. The Civil Rights of Institutionalized Persons Act (CRIPA) authorizes Justice to investigate allegations of unsafe conditions and deficient care and to file suit to protect the civil rights of individuals living in institutions operated by or on behalf of state or local governments. Justice Department investigations are conducted on site by Justice attorneys and expert consultants who interview facility staff and residents, review records, and inspect the physical environment. The Justice Department seeks to determine whether a deviation from current standards of practice exists and, if so, whether the deviation violates an individual’s civil rights. Unlike HCFA, Justice has no written standards or guidelines for its investigations. Justice Department officials told us that the standards they apply are generally accepted professional practice standards as defined in current professional literature and applied by the experts they retain to inspect these institutions. Since the enactment of CRIPA in 1980, Justice has been involved in investigations and enforcement actions in 38 cases involving large public institutions for the developmentally disabled in 20 states and Puerto Rico. As of July 1996, 13 of these investigations remained ongoing, 17 had been closed or resolved as a result of corrections being made, 7 continued to be monitored, and 1 litigated case was on appeal. State Medicaid surveys and Justice Department investigations continue to identify serious deficient care practices in large public ICFs/MR. A few of these practices have resulted in serious harm to residents, including injury, illness, physical degeneration, and death. As of August 1995, 28 of the 434 large public institutions were out of compliance with at least one CoP at the time of their most recent annual state survey. On the last four annual surveys, 122 of these institutions had at least one CoP violation. (See table 1.) These serious violations of Medicaid regulations commonly included inadequate staffing to protect individuals from harm, failure to provide residents with treatment needed to prevent degeneration, and insufficient protection of residents’ rights. Lack of adequate active treatment was the most common CoP violation cited in large public ICFs/MR. Serious active treatment deficiencies were cited 115 times in 84 institutions on the past four annual surveys. Eighteen institutions were cited for this CoP deficiency on their most recent annual survey. Serious active treatment deficiencies cited on the survey reports included, for example, staff’s failure to prevent dangerous aggressive behavior, failure to ensure that a resident with a seizure disorder and a history of injuries wore prescribed protective equipment, and failure to implement recommended therapy and treatment to maintain a resident’s ability to function and communicate. State surveyors also frequently found other CoP violations. They found, for example, residents of one state institution who had suffered severe hypothermia, pneumonia, and other serious illnesses and injuries as a consequence of physical plant deterioration, inadequate training and deployment of professional staff, failure to provide needed medical treatment, drug administration errors, and insufficient supervision of residents. Surveyors determined that the state had failed to provide sufficient management, organization, and support to meet the health care needs of residents and cited the facility for violating the governing body and management CoP. Other CoP violations found during this period include serious staffing deficiencies and client protection violations. Surveyors of one state institution reported deficiencies such as excessive turnover, insufficient staff deployment, frequent caseload changes, and lack of staff training. In this institution, surveyors also found residents vulnerable to abuse and mistreatment by staff and staff who failed to report allegations of mistreatment, abuse, and neglect in a timely manner. Other staff who were known to abuse residents in the past continued to work with residents and did not receive required human rights training. State agencies also conduct complaint surveys in large public ICFs/MR in response to alleged deficiencies reported by employees, advocates, family members, providers, or others. State agencies’ complaint surveys found 48 serious CoP violations from 1991 through 1994. The most frequently cited CoP violations were client protections, cited 22 times, and facility staffing, cited 11 times. (See table 1.) State survey agencies generally certify that facilities have sufficiently improved to come back into compliance with federal CoPs. When survey agencies find noncompliance with CoPs, they may revisit the facility several times before certifying that a violation has been corrected. On average, it takes about 60 days for this to occur. Since 1990, the Justice Department has found seriously deficient care that violated residents’ civil rights in 17 large public institutions for the mentally retarded or developmentally disabled in 10 states. Its investigations have identified instances of residents’ dying, suffering serious injury, or having been subjected to irreversible physical degeneration from abuse by staff and other residents, deficient medical and psychiatric care, inadequate supervision, and failure to evaluate and treat serious behavioral disorders. Justice found, for example, that a resident died of internal injuries in 1995 after an alleged beating by a staff member in one state institution that had a pattern of unexplained physical injuries to residents. In addition, the Department found that in the same facility a few years earlier, a moderately retarded resident suffered massive brain damage and lost the ability to walk and talk due to staff failure to provide emergency care in response to a life-threatening seizure. In another state institution, Justice found facility incident reports from 1992 and 1993 documenting that some residents were covered with ants and one resident was found with an infestation of maggots and bloody drainage from her ear. In another facility, Justice found that a resident was strangled to death in an incorrectly applied restraint in 1989. We reviewed Justice’s findings letters issued since 1990 for 15 institutions.