This informal discussion session was facilitated by Beatriz Mitchell, who is a parent advocate.

Session participants were invited to discuss the question, "What does independence mean to me?" Some of the responses included: "Doing what you want and achieving the goal," "Interdependence-there's no such thing as independence," "Not having someone dictate the boundaries of my life," and "Informed choice, informed consent."

Independence Needs To Be Defined, Say Participants

A number of participants mentioned that some parents are protective of children with disabilities. Because of this, they fear that something will happen to them if they live away from home. Participants agreed that the independent living process needs to be carefully explained to families, in particular that the final choice is up to the person with the disability and not to the family.

However, attendees at the workshop also acknowledged that cultural perspectives can vary widely. They recommended that the disability leadership help define independence from various cultural perspectives, including the Latino approach.

Caseworkers, Interviewers Need To Be Culturally Knowledgeable

Anglos and Latinos often have vastly different perspectives on when it is "time" for sons and daughters to leave home, audience members pointed out. In Latino culture, and other cultures, it is "never time to leave home" unless you go to another home-in other words, unless you get married. Both men and women are expected to live with their parents until marriage whether or not they have a disability. The child, however, might have a different perspective than the parents depending on their degree of acculturation and depending on whether they are the first, second, or third generation of the family to live in the United States.

The Importance of Family Needs To Be Respected

One theme that emerged during discussion is the point that decisions made by minority groups are often made as a family unit, not by individuals. Workshop participants suggested that families need to be consulted in the interview process. Caseworkers should not isolate the person with a disability or interview him or her apart from the family.

Workshop attendees also indicated that peer support and family peer support can be very effective in helping individuals with disabilities. One organization called Family Voices was mentioned as a good source of peer support. The English version of their web site is available at http://www.familyvoices.org and the Spanish version of their web site is at http://www.familyvoices.org/enespanol.html

The Role of Parents and Family Vary

It was concluded that the roles of parents and family in the independent living process can vary greatly depending on each individual's culture and environment. Parental and familial roles need to be considered on a case-by-case basis.

A young woman at the workshop mentioned that she has a disability that is not visible. She lives at home with her father; both she and her father consider themselves to be independent people.

One Anglo woman who uses a wheelchair stated that her mother is her attendant and travels everywhere with her. She indicated that, at Anglo conferences, it could be almost embarrassing to be traveling with her mother. However, at the Building Bridges conference and other conferences, where family is very prevalent, she has a totally different feeling--it feels great to be with her mother.

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