Call to Action to State and Federal Policymakers:

Media coverage highlighting the increasing need for more effective federal and state protections in the ever-expanding community system of care for people with mental retardation

Any realistic examination of the nationwide community services system reveals glaring weaknesses in the capability of current services systems to deliver high quality supports to individuals with mental retardation and developmental disabilities.[1] This truth is borne out in media headlines every day across the country (see enclosed).

A look at community expansion statistics over the last two decades will help explain the challenges now being faced by state and local officials. Between Fiscal Years 1980 and 2004 large state operated facilities’ average daily populations decreased by 88,968 (67.9%) to 42.120 individuals. More than 80% (41) of all states reduced the average daily populations of their large state facilities for people with mental retardation by 50% or more. By 2004, nearly 84% of all people with mental retardation and developmental disabilities receiving residential supports were served in residences with less than 15 people. 46.2% were served in residences with three or fewer residents.[1]

The increased emphasis on the use of very small living arrangements has caused the number of sites to increase dramatically and become diffused throughout communities. There is little doubt that the explosion in the number of these small, community-based residential sites is posing substantially greater quality management and system infrastructure challenges for states and local developmental disabilities authorities.

Increased media attention on these issues confirms that states have not always met these challenges successfully. Tragedies -- abuse, neglect, and death of people with mental retardation -- and financial misappropriations plague the landscape. Individuals with mental retardation and developmental disabilities who suffer through these tragedies face continued instability as provider licenses are revoked and/or bankruptcy is filed.

State officials are left, seemingly, with no easy solutions. When faced with mounting costs, increased needs, and relentless pressure (advocacy and legal) from advocates who demand community placement for all people with disabilities, states often forget the most important part of the equation: Individuals with mental retardation and developmental disabilities.

It is time that States step back, carefully consider the existing quality of its community service system and pose such questions as, “How are those people now in the system being served?,” “How much money is needed to improve the system for current and future users?,” “Are the state’s monitoring and oversight mechanisms effective to ensure continued quality improvement?, “Do conclusions from recent planning (i.e., Olmstead planning) make sense in light of the weaknesses present in the existing state infrastructure?” and “What are the best practices in the state and in other states?”

Once state developmental disabilities officials have the answers to all relevant quality questions, they can then develop a plan that outlines for decisionmakers the funding and quality mechanisms needed to assure that people with developmental disabilities who choose to reside in the community will have a truly beneficial experience.

Attached are summaries of a series of articles describing what does happen when there is inadequate quality assurance in place in the community. We can and must learn from these experiences if the potential of community living is to be realized by people with mental retardation and developmental disabilities.

State developmental disabilities officials must ensure the highest quality of life and care for people in their charge. Lessons learned from other states — including what not to do — can help lead the way.

[1]Robert Prouty, Gary Smith, and K. Charlie Lakin (eds.) (2005). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2005. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institution on Community Integration.

For more information, please contact: Tamie Hopp, VOR Executive Director

605.399.1624 voice; 605.399.1631 fax; vor@compuserve.com.

VOR is the only national organization supporting an array of quality services options, including own-home, other community-based services and supports, and Intermediate Care Facilities for the Mentally Retarded.

VOR * 836 S. Arlington Heights Rd., #351 * Elk Grove Village, Illinois * 60007

877-399-4VOR ph. * 847-258-5273 fax * tamie327@hotmail.com