Excerpts from
Families Look Ahead Together
A Resource Manual
A disclaimer: We are not lawyers and are not herein providing legal advise.
Over a twelve month period in 1992-93, Families Look Ahead Together! was developed to demonstrate the kind of support that can assist families of older children with disabilities in examining options and planning ways to meet the needs, hopes, and dreams of each family member. The 30 or so families served by the project were seriously considering what life will be like for their sons and daughters after they're gone; had been looking at what's out there now and what could be in the way of community living options; and had been trying to figure out ways that sons and daughters might live closer to home when they want to. These families were seeking to be supportive in the lives of their children. In these respects, the families served by the project are no different than others in the state and the nation.
The project was carried out in the Tri-Valley area of Alameda and Southeastern Contra Costa counties of California. These are the communities in and around Dublin, Pleasanton, Livermore, San Ramon, and Danville. It was funded through a Program Development Fund grant from the Area V Board on Developmental Disabilities and Regional Center of the East Bay. We were subcontracted to provide training and materials to the contractor, ARC Alameda County. Tom Heinz was our fearless Project Coordinator and a great working partner.
Before the project began, (1) fifty to sixty families completed surveys on preferred living arrangements; (2) a session on values clarification was held; and (3) a focus group met to get a better idea of what families in the area wanted and needed. The focus group identified several needs:
To demonstrate useful planning services for families of adult children with disabilities, the Tri-Valley area was ideal for several reasons. First, there are few licensed living arrangements in the area. Second, ARC-Alameda County was committed to providing supported living services through the ILS (Independent Living Services) and/or new CSLA (Community Supported Living Arrangements) vendor categories. Third, a rather cohesive group of parents had gotten to know each other over the years through the Garnet Austin Chapter of the ARC. Finally, with expansion of supported employment, these parents had sold a workshop, and were using the proceeds through a new, nonprofit housing development corporation, called HOUSE, Inc., to meet the needs of some of their children.
A Family-Focused Plan
After an initial, get-acquainted meeting in July 1992, the remaining summer months were used for family-focused, personal futures planning exercises geared to the wishes of participating families. Rather than a standard format, we offered families several options for developing a plan, including not doing anything. Some fifteen families held their own planning meetings or asked one of the project staff -- Tom Heinz, Bill Allen, or John Shea -- to come to their homes for such an exercise: sometimes with only close family; at other times, with neighbors, friends, and others as well. This approach gave us a much clearer idea of the priority needs of families, and assisted in structuring subsequent monthly family meetings.
Subsequent Family Meetings
For about nine months, meetings were held monthly for families. Attendance was excellent, ranging between 25 and 50 participants at each. Although not necessarily in the following order, topics included:
Working with Parents and Consumers
We encouraged whole families to attend meetings. But, recognizing that some topics (e.g., estate planning) were probably of greater interest to parents than to their sons and daughters, at about half the meetings we offered an option for people. We did not assign or insist that anyone participate in main or optional activities, although in some instances the process itself was predicated on parents and their offspring sharing their views independently, then coming back together to discuss matters of mutual interest. We did this, for example, with an exercise on the meaning of Independence.
The complete resource guide is still available for no charge from several sources. We would suggest that you call or write:
Cindy Ruder
Area IV Board on Developmental Disabilities
236 Georgia Street, Suite 201
Vallejo, CA 94590
(707) 648-4073
If that doesn't work, we still have a few copies that we could send in return for a small remittance for copying and postage.
Here are some excerpts from the manual that you might find interesting (we'll be adding more as fast as we can):
A resource list from the ARC Home Page.
A list of resources for families interested in planning ahead together.
An overview on trusts and wills.
A checklist of things to think about when looking at your special needs trust.
An overview on limited conservatorships in California.
An overview on Section 8 housing subsidies.
Basic Facts about Social Security.
As we are only able to scratch the surface, here are other links that you will find quite useful:
Here you'll find the Arc United States Home Page.
The National Institute on Life Planning for Persons with Disabilities.
If you have comments or questions or things you would like to see here, please send them to us.
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