Whose Vision is it?

A Person's Right to Make Decisions for Themselves

Talking about “family vision” may strike some people as mistaken. Recognition of a person’s right to make decisions for themselves has been a significant achievement of advocacy by and for people with intellectual disabilities. Experience shows that parents can unnecessarily –even detrimentally– limit their adult daughter’s and son’s autonomy, restrict their opportunities, and demand overprotective services.

Dave & Kathy Gunderson: As she grows older we understand more and more that she needs to be in control. She needs to be the director of her life and her future.

Experience also shows that when a family aligns and mobilizes around a vision of an inclusive life in community a person with intellectual disabilities has an irreplaceable source of support to give voice to their dreams of a good life and energy to follow those dreams along community pathways. Family vision doesn’t mean “doing just what the parents want”. It is a shared creation. Family vision is the result of family members listening to one another, seeking perspectives from outside the immediate family, and finding ways to deal with the conflicts that come up in healthy family relationships. In the context of FMS, the person with intellectual disabilities becomes the focus of attention. For the purpose of visioning, the whole family shares their views of the person’s strengths and gifts, applies their imaginations to identify the possible community pathways and supports that will allow those strengths to benefit the family and the community, and take responsibility for committing their resources to the person’s journey.

A good life includes the expectation that adult status calls for greater respect for a person’s choices and for their distinct identity. A person is not just “one of the McCarthy Family” any more than they are just a person with Down Syndrome. She is this particular McCarthy, distinguished by first name and personality and history, one aspect of whose identity is defined by genetic difference and society’s response to that difference. Figuring out how to best be this distinct self in this family and community makes occasional conflict almost inevitable. Family members may disagree in their assessments of what is possible and what is risky, what to eat or drink, how much to exercise, how to use money, how to comply with a health regimen, who to hang out with, and how to pursue an intimate relationship -all these are common points of struggle. Families find that a shared vision of this person’s life on inclusive pathways that best suit them provides a context for resolving whatever conflicts may arise as a person with a intellectual disabilities matures. Unless the person feels that their voice is strong and respected in shaping a vision that belongs to them visioning will have limited effect because the person will lack energy for the work of realizing the vision.

Wendy McDonald: The vision started taking shape because of Kyle. As his friends started joining sports teams he came to us with the idea of playing football, which wasn’t something that even we thought was possible. It was pretty scary for us. (His positive experience playing football) reinforced our vision of what might be possible in his life.

Unhelpful cultural patterns elevate independence (seen as the sovereign individual acting alone to impose their will) over interdependence (recognizing the power of mutual support for good purposes). The myth of independence can create false choices: either the person is the boss or the parent is the boss. This is a recipe for stunted and puny visioning. Purposely striving for a family vision that activates inclusion recognizes the reality of interdependence and provides needed energy and clear direction.

Robin Acton: Over the years, Erin has taught us how to pick up on cues when things aren’t working for her. Erin is very involved in the hiring process, and then we listen to her about how things are going.

A person’s need for others to interpret their intentions or assist them to manage everyday tasks that others typically do for themselves makes interdependence undeniable. Common material conditions strengthen practical interdependence:

  • Some people continue to live with their parents, so decisions need to take account of others in the household.
  • Many people with intellectual disabilities count on family members, usually their parents, for assistance and support, including support for decision making. Some parents or family members are part of a person’s informal or formal arrangements for supported decision making and some have guardianship. (Guardianship is not necessary to receive FMS funding.)
  • Virtually all FMS participants count on an FMS Administrator, usually a family member, who agrees with PDD to assure their well-being and the quality of their supports. Most often this is a family member. (It is possible for a person with intellectual disabilities to be their own FMS Administrator, but the number of these situations is very small.)
  • Some families are in a financial position to support meeting university tuition costs or making a down payment on a mortgage.
  • Some sisters and brothers are in a position to hold responsibility for offering or managing supports, perhaps as an FMS Administrator.

Done well, creating a family vision strengthens the person’s voice, guides the search for great opportunities in community life, and mobilizes necessary supports.