The Arc of Minnesota - Position Statement on System Redesign

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Position Statement on Stakeholder Involvement in Service System Re-design

ISSUE:

The service system for persons with intellectual disabilities and other developmental disabilities and their families is continuously evolving. Stakeholder involvement is integral to redesigning and improving a service system that is both responsive and cost effective. People with intellectual disabilities and other developmental disabilities and their families are the authorities on deciding what their individual needs are and how those needs can best be met. Therefore, they must be actively involved in all public and private planning and development of systems to better meet those needs.

Collaborative efforts result in greater satisfaction for everyone. People with intellectual disabilities and other developmental disabilities and their families bring fresh and valuable insights and observations. They can be visionaries. Their dreams are not tied to bureaucratic limitations, and they can provide inspiration and guidance to the boards or committees on which they serve.

Recently, stakeholders have demanded a stronger emphasis on self-determination and consumer control in the planning and delivery of services. Individuals with disabilities and their families have sought individual choices and more control of their services and funding rather than program funding categories and regulations which restrict their choices and disregard their individual desires. It is recognized that the present system severely limits the exercise of freedom and responsibility by most recipients of public long term care supports. Also, the organization and regulations of the present system can result in non-productive and limited lives for recipients.

POSITION:

People with intellectual and other developmental disabilities and their families are the consumers of long-term care services and as such must be involved in all aspects of planning, service delivery, and evaluation of service delivery programs. All stakeholders groups and advisory boards at the local, state, and national level regarding health and human services, education, employment, and housing must include people with intellectual and developmental disabilities and their families. Adequate training and education must be provided to ensure their informed participation. Professionals must have a basic philosophical belief in the value of the expertise and knowledge of people with intellectual and other developmental disabilities and their families. This requires new skills and attitudes for both professionals and such consumers.

We believe that the following principles must also be followed in designing or redesigning service delivery systems in which people with intellectual and related developmental disabilities and their families will become major stakeholders:

Self-determination must guide the redesign of the entire system of long term care. Self-determination means control over a place to call home, real membership in the community, support for long term relationships with others, and the generation of private income through work. Consumers must have more individual choice over services and control over the funding allotted to them. (See the Arc of the U.S. Position Statement on Self-Determination.)
System redesign must seek to create flexibility in guiding and regulatory systems to foster the exercise of freedom and responsibility by recipients. System redesign must also seek cost effectiveness, when appropriate.
While the service system should include internal controls, oversight for the ultimate protection for consumers must remain outside the service delivery system, including consumers, advocates, family members, and guardians.

This statement was approved by the Delegate Body at The Arc of Minnesota Annual Business Meeting on October 28, 2007.