An Increasing Demand for High Quality Community-based Services
The field of services and supports for people with mental retardation, autism, and related disabilities is facing a leadership crisis. Developmental disabilities are severe, life-long disabilities attributable to intellectual and/or physical impairments, manifested before age 221. There are approximately 4.5 million individuals with developmental disabilities in the United States.
The federally-funded Research and Training Center on Community Living at the University of Minnesota reports that in 2005, over 344,000 individuals with developmental disabilities were living in small, community-based settings; this is over seven times as many people as were living in such settings in 1982.2 David Braddock of the Coleman Institute for Cognitive Disabilities at the University of Chicago has done extensive research on the changes in service delivery models supporting individuals with developmental disabilities. In a recent report, Braddock estimates that there are between 11,000 and 13,0000 organizations in the United States that provide community-based services for people with developmental disabilities.3 Every one of those agencies needs competent leaders to guide them.
Virtually all of the program development and leadership training available in the developmental disability field is focused on special education and related services, despite the fact that the vast majority of people with developmental disabilities are adults living in their home communities. In the not-too-distant past, a great number of people with significant developmental disabilities died before they reached their 30th birthday. Today, individuals with disabilities are living well into their 60s, 70s, and even beyond. Individuals with Down syndrome, for example, have experienced a doubling in life expectancy. In 1983, the average lifespan for an individual with Down syndrome was just 25 years. By 1997, this had increased to 49 years.4 A 2003 study of over 1,200 persons with Down syndrome conducted in Perth, Australia found that the average life expectancy of a person with Down syndrome was 57 years of age.5 While achievements in increasing the life spans of individuals with disabilities is to be celebrated, the field is unprepared to meet the increasing need for community services.
In addition to the increasing life expectancy of persons with developmental disabilities, the family members who have traditionally provided the most support for this group are aging and dying. In a 2004 study, researchers at the University of Colorado determined that over 700,000 adults with developmental disabilities in 2002 were living with caregivers (usually family members) who were 60 years of age or older.6 Twenty or thirty years ago it was not uncommon for children with significant disabilities to be sent to institutions at the advice of doctors. When a free and appropriate education was made a legal right for all children, many parents chose to raise their children with disabilities at home. The generation of people with disabilities whose families refused institutionalization are now middle-aged and their parents are aging. These individuals are entering the service system in their forties, fifties, and sixties, putting pressure on an already strapped system. The University of Colorado researchers concluded, “The likelihood of older persons with developmental disabilities living into their own retirement and outliving their family caregivers has increased substantially in recent years … this has stimulated a growing demand for additional services and supports.”7
The increasing demand for high quality, responsive, community-based services for adults with developmental disabilities is occurring at a time when the leadership of organizations and programs dedicated to the provision of those services is retiring. With the planned exit of over 60% of the leadership of nonprofits over the next five years8, there is a critical need to develop new leadership that can respond to the growing demands for quality services from families, states, and persons with developmental disabilities.
Over the past thirty years there has been a dramatic shift in the way individuals with developmental disabilities are supported in this country. No longer is it assumed that even people with the most significant disabilities need to be in institutions or segregated facilities to receive specialized services. It is now well known that even complex health care services can be provided in the homes of those with chronic medical needs. Similarly, both children and adults with even the most significant developmental disabilities are now routinely provided in people’s homes and home communities. Adults with disabilities are supported to live lives that are productive and have meaning, in their own homes, with the individualized services that they need for the successful achievement of goals they have established for themselves.
1 U.S. Administration on Developmental Disabilities
2 Lakin, C. Challenges of the environment for services and supports. Presentation, July 7, 2006. Newark, DE
3 Braddock, D., Hemp, R. Rizzolo, M.C., Coulter, D. Laffer, L. & Thompson, M. (2005). The state of the states in developmental disabilities 2005. Washington, D.C.: American Association on Mental Retardation
4 Yang, Q., Rasmussen, S.A., & Friedman, J.M. (2002). Mortality associated with Down's syndrome in the USA from 1983 to 1997: A population-based study. Lancet 359 (9311):1019-25.
5 Glasson, E., Bittles, A., & Patterson, B. (2003). Increasing life expectancy for Down syndrome: Implications for counseling. Disabilities Services Commission, Perth, Australia.
6 Rizzolo, M., Hemp, R., Braddock, D., & Pomeranz, Essley, A. (2004). The state of the states in developmental disabilities. Denver, CO: University of Colorado.
7 Ibid., p. 56.
8 Change Ahead: The 2004 nonprofit executive leadership and transitions survey. (2004). Baltimore, MD: The Annie E. Casey Foundation.
