Terrence McNelis, MPA, Chair, NADD US Policy Committee
The prevalence of mental illness for persons with cognitive impairment has been well studied over the past 30 years. Although the figures vary it is generally accepted that the incidence of mental illness in persons with an intellectual disability is 3 to 5 times greater than the nondisabled population (American Psychological Association, 2000). Attempts to quantify the percentage of persons with intellectual disability and mental illness have ranged from 20% to 71% (Borthwick-Duffy, 1994; Moss, 2000). There have been disagreements over diagnostic validity, diagnostic overshadowing as well as significant variance in settings. For the purposes of this discussion we will use the most conservative estimate. In July of 2008, the population of the United States was a little over 302 million. Using the above figures that would suggest there are 966,000 people with intellectual disabilities who also show signs and symptoms of a mental health disorder.
For over 20 years state developmental centers have shown dramatic reductions in their census with the movement of individuals into the community settings. By 2007, the average daily census in large state settings had reduced from over 150,000 in 1977 to 37,172 (Prouty, Alba, & Lakin, 2008). However the year 2007 also showed a significant slowing of the trend of movement of people out of state facilities. During the year, the census was reduced by 3,458 individuals. This number is comprised of 2,637 individuals who were actually discharged and 821 others who had passed away. However, 2,128 additional people were admitted into large state facilities. This reveals that the real net reduction was 509 people or a little over 1% reduction (Prouty, et al., 2008).
As stated in the introductory paragraph, it is a conservative estimate that the percentage of people with intellectual disability and a co-morbid mental health disorder could be around 20%. Therefore it is safe to assume that there are at least 7,500 individuals with a dual diagnosis, who continue to reside in state centers. Most researchers agree that the number of individuals with ID/MH most likely is much higher than the 20% estimate given. It is well know that as congregate settings decrease in size it is often the person with the more challenging issues who is left behind. As large state facilities decrease in census the ratio of people with ID/MH increases. Additionally, the community service capacity has decreased over the same period of time. There has been a slow erosion of the funding for these programs over the past few years, and it has accelerated dramatically since the onset of the recession. As states have struggled with budgetary issues, there has been an inability for rate increases to keep up with the ever increasing cost of services. These increases have mainly been in the non-negotiable cost arena of health insurance, heating, utilities, and gasoline. In the absence of cost-of-living adjustments, community service providers have found it difficult or impossible to increase the wages of direct support professionals and clinicians as well as administrators. Vacancy rates have risen and turnover has continued at an unacceptable rate. These weaknesses in the community services puts individuals at risk when there is a consideration of moving that individual home.
While all of the above issues are brewing, the national waiting list for intellectual disability services has ballooned to 224,147 individuals requesting Medicaid, Health and Community Based Services (HCBS) during the same 2007 period. Of those on the waiting list, 88,349 are requesting residential services. To meet this need, the HCBS budget would have to be increased by 46% (Prouty, et al., 2008) during a fiscal era where funds are scarce or nonexistent.
Clearly we are at a crossroads in our concepts of how we deliver community services going into the next decade. At the 2009 NADD Annual Conference in New Orleans, Nancy Thaler, Executive Director of the National Association of State Directors of Developmental Disability Services (NASDDDS), eloquently stated the need for a paradigm shift in our concept of community services. Ms. Thaler spoke to the need to support individuals and their families in their natural homes and in alternatives to group homes in the community. She suggested movement in the existing services by offering individuals alternative less restrictive settings to community group homes and supporting families more aggressively to keep their family member home. Additionally this author would suggest a renewal of our initiative to move people out of state developmental centers. Not only is it ethically important to have people live in the least restrictive setting, it is also an economic engine to aid the system. In 2007, the average cost to support an individual in a large state facility was $176,000/yr. (Braddock, Hemp, & Rizzolo, 2008). The financial argument against moving people out of the state centers has not been the cost of community services but rather has always centered on the transition cost created by the downsizing of the institutions while at the same time ramping up community services. However, it has become clear that the dollars that are in the large state facilities are also the revenue that could strengthen the community system and allow movement of people back home. It is imperative that states create ways of moving people and the required dollars from large state facilities into well designed and fully funded supports in the community. This would allow new service initiatives to be more responsive to the waiting list rather than a competitor for scarce resources.
American Psychiatric Association (2000) Diagnostic and Statistical Manual of Mental Disorders, (4th ed., text revision). Washington, DC: Author..
Borthwick-Duffy,S.A .( 1994). Epidemiology and prevalence of psychopathology in people with mental retardation. Journal of Consulting and Clinical Psychology, 62(1), 17-27.
Braddock,D.,Hemp,R, & Rizzolo,M. (2008). State of the states in developmental disabilities. Washington, DC: American Association on Intellectual and Developmental Disabilities.
Moss, S. (2000). Psychiatric symptoms in adults with learning disability and challenging behavior. British Journal of Psychiatry, .177, 452-456.
Prouty, R.W., Alba, K., & Lakin, C.K. (2008). Residential services for persons with developmental disabilities: Status and trends through 2007, Research and Training Center on Community Living. Univ of Minnesota, Aug.
For further information, contact Terrence McNelis, MPA, Chair, NADD US Policy Committee at email@example.com.
The "U.S. Public Policy Update" is an ongoing column in The NADD Bulletin. We welcome your comments and submissions for this column. To learn more or to contribute to this column you may contact Joan Beasley, Editor of the U.S. Public Policy Update at firstname.lastname@example.org.