Pursuing Self-Determination

By Shumway, Donald L. | The Exceptional Parent, December 1996 | Go to article overview

Pursuing Self-Determination


Shumway, Donald L., The Exceptional Parent


We have all been in the position of pursuing self-determination--knowing our own needs best--and yet having to give up control to experts. The movement is growing for self-determination as a government and institutional policy for allowing people with disabilities to determine their own futures. It derives from the belief that all persons--including people who have disabilities and their families--deserve that opportunity. No one does a better, or less costly, job at that than those who are most affected.

Interpersonal relationships, learning and community roles all suffer under programs that "provide for" but do not encourage self-direction in one's own life. With self-determination, we can dare to dream.

Self-determination is an important next step in how services will be delivered, allowing persons and their families and friends, in conjunction with professionals, to be the decision makers concerning the needed supports.

Examples of self-determination

The most innovative self-determination initiatives are those in which persons and families determine how an individual budget will be spent on housing, employment and personal needs. An important feature of this approach integrates persons with disabilities in the life of their communities and builds informal networks of friends and family who can provide some of the necessary day-to-day support. For example, a person with a disability may make a suitable arrangement with co-workers for transportation to employment rather than use a separate transportation system for people with disabilities. In this way, the quality of life for persons with disabilities can be enhanced and expenditures may be reduced.

Many persons and their families have been clamoring for such an opportunity for years. This type of change started with good family support programs that gave over the reigns of bureaucratic structure to families in areas such as family-controlled respite care. Families are now looking beyond respite and calling for a more sweeping commitment, including features such as:

* Individuals and families controlling a specified amount of financial resources--an individual budget--so that they can directly purchase or arrange desired and necessary education, day, or residential supports;

* Individuals and families planning their own futures with assistance from family and friends as well as others whom they deteRmine helpful, as opposed to just responding to the sometimes "computer-generated" and often irrelevant Individual Service Plans (ISP), Individual Education Plans (IEP) and Individual Treatment Plans (ITP).

* Helping persons with developmental disabilities inform other persons with disabilities about how they can live more independently, and introducing families to the new opportunities available under a reformed system (for example, how flexible funds can support community living);

* Creating agencies (either by changing present ones or starting new ones) that become fiscal intermediaries and personal brokers to back up and support families with services such as payroll, insurance and related assistance;

* Making sure that managed care does not become an impersonal corporate management system, but rather a person-directed support system.

Robert Wood Johnson Foundation

The Robert Wood Johnson Foundation (RWJF), the largest U.S. philanthropy devoted to health care, has created its first national program devoted to people with developmental disabilities: "Self-Determination for Persons with Developmental Disabilities." RWJF will distribute five million dollars in grants to help state governments change their policies to support self-determination.

Its exclusive aim is to help individuals and families gain this new strength for taking charge of their needs. Having supported the testing of such projects in New Hampshire and observing similar efforts in other states, RWJF has established a National Program Office at the Institute on Disability at the University of New Hampshire under our.

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