Terrence McNelis, Co-Chair, US Public Policy Committee
Since 1977 there has been a movement toward dramatic reductions in the use of large congregate settings for individuals with intellectual disabilities, and to foster integration into ordinary community setting whenever possible. Although there is great variability between the states in the U.S in the way they implemented plans for community based services, there was a consistent movement toward less reliance on institutional settings and increased provision of community based services with a significant decline in resources allocated to institutional settings across the board between 1977 and 1990. In fact, 1989 marked the first time that spending in the Community eclipsed the Institutional level. In 2004, twenty one percent of the out of home placements were in Institutions (102, 692), with 77% of the placements in the community (389,693) (Braddock D. et al., 2005).
Unfortunately, the move toward community life has been somewhat compromised for those with co-occurring disorders; individuals with mental health issues and intellectual disabilities and those who are medically fragile. For those individuals, the path toward community placement was a rougher one. In the case of medical fragility the focus has been primarily on the identification of sophisticated community medical supports as well as the cost of provision of medical services in small settings. Deinstitutionalization for those with intellectual disability and mental illness has been an even more challenging task. It has required community service systems to gain capacity to support individuals most mental health providers did not have the capacity to serve with ever dwindling resources. Individuals with co-occurring disorders are provided services in multiple service contexts, requiring time, expertise and a service structure that allows for collaboration and cooperation across systems of care.
There has been a better understanding of the treatment needs of these individuals over time. Development has concentrated in the areas of medical services, positive approach concepts, person centered planning, community treatment models, and behavior management capacity, psychiatric services, and ways to train direct support professionals. However, in many states there continues to be a lack of access to appropriate services, and little accountability of a system that in some cases remains quite fragmented.
Since there have been attempts to move individuals with ID/MI out of the institutions since the late 1970s, there are other lessons that have been learned. The problems just described contribute the finding that persons with ID/MI are the most difficult to move out of institutions, and they are also the most likely to be re-institutionalized. Individual states have attempted various methods to prevent re-institutionalization. The efforts range from closing state institutions to prevent re-entry, closing admissions to state institutions, and passing on the cost of institutionalization to local entities. In addition to the passive methods mentioned above, some states have developed active diversion strategies to prevent the re-institutional placements of individuals.
The Home and Community Based Services Waiver (HCBS) is now the principal Medicaid program supporting individuals in residential settings. HCBS, created in 1981, are federal matching dollars for a wide variety of community services and supports (Braddock D. et al., 2005). As an alternative to ICF/MR funding, the Waiver provided more latitude on state initiatives to support individuals with intellectual disabilities. The Centers for Medicaid and Medicare Services permit individual states to submit Medicaid Waiver applications on a state by state basis. Therefore each state has developed relatively unique methods of supporting individuals with ID/MI. Additionally states may no longer fund a program that was once in vogue in the mid 1990s if it is no longer seen as viable.
Although some states have met their goals through the use of the HCBS and other innovative methods of service development and provision, many have found themselves in a placement quandary when they lack adequate community capacity to support an individual with ID/MI and they have closed the state center institution and depopulated private Intermediate Care Facilities (ICFs/MR). In these situations there is evidence to suggest that individuals are being placed in state mental health facilities, not as the treatment of choice but rather as the resource of last resort. There is no other place to put them, so they are being housed in state mental health facilities.
The anecdotal evidence suggests that there has been an erosion of the ability to support individuals with ID/MI in the community. Although there have been numerous success stories, more and more states are finding themselves in the placement quandary. Cuts in mental health services and related supports have decreased the community capacity to serve individuals with a co-occurring intellectual disability and mental illness, few states have community based diversion services, and the state developmental centers are no longer available. The option selected may be a state operated psychiatric facility (hospital) or placement in another facility out of state.
The NADD US Policy Committee would like input from our readership in hopes to learn more about experiences around the country with regard to these issues. We are interested in learning about three factors:
1. How does your state support individuals with co-occurring disorders with acute needs or who are in crisis?
2. To what extent are state mental health hospitals used for individuals with intellectual disabilities for long term care in your state?
3. Do you provide services through the Home and Community based Medicaid waiver to help keep people out of institutions or long term hospitalizations? Please describe
At the Annual Conference in Atlanta this October, the US Public policy Committee will provide a forum to share information about this very important issue. We have invited speakers who will help to define the problem, prevent solutions and discuss how your state can consider providing more effective services through their HCBS waiver.
Please send your comments and information to: Joan B. Beasley, Ph.D. Chair US Public Policy Committee at firstname.lastname@example.org