Self-Determination for Persons with Developmental Disabilities

An RWJF National Program

Field of Work: Working toward a more cost-effective system for serving persons with developmental disabilities while simultaneously giving those persons and their families more choice in determining the services they receive.

Problem Synopsis: In the mid-1990s, state programs serving individuals with developmental disabilities faced three serious problems: rapidly rising costs for services, insufficient resources to serve everyone who needed help and fixed sets of services that gave individuals and their families little control over what services were provided, when or how.

Synopsis of the Work: Four elements were central to Self-Determination for Persons with Developmental Disabilities (November 1995 through August 2001):

  • Person-centered planning, where each individual defined his or her own needs; learned about available services and providers; and received assistance in planning services.
  • Independent support brokerage, meaning that independent professionals (brokers) helped individuals and their families identify their needs and find services and providers who could meet those needs.
  • Individual budgets, wherein participating states allocated a pool of money that the individual could use to pay for the services and supports he or she chose.
  • Fiscal intermediaries to act as business agent, purchasing services and managing wages, taxes, fringe benefits, accounting and compliance with labor and tax regulations.

Key Results

  • There was a shift in decision-making from professionals to individuals with disabilities, and improvement in some but not all quality-of-life indicators.

  • Flexibility, a system-wide approach and the availability of direct support workers were critical factors in the success of self-determination initiatives.

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