Family Future Planning Project

Tamar Heller & Alan Factor
University of Illinois at Chicago, 2002

What This Project is About:
This purpose of this project is to support family caregivers and individuals with developmental disabilities in planning for the future. It is important because:
  • Many individuals with developmental disabilities live at home with their families and about a quarter of family caregivers are over 60 years old.
  • Individuals with developmental disabilities are likely to outlive their parents. If planning is not done ahead of time, individuals might end up in emergency residential placements.
  • Money left through an inheritance might not go towards the individual’s needs or may cause the individual to loose their government benefits and other services.
  • Other family members, like siblings, might not be prepared to become the primary caregiver.

Planning is difficult. It is emotional and legal/financial planning is very complicated. It is sometimes difficult to find services and there are long waiting lists. Also, when families do plan for the future, they sometimes do not include the individual with a disability in the planning. Our project supports families in planning by offering workshops every month for seven months. Each workshop has a different topic. Both family caregivers and their relatives with developmental disabilities attend the workshops. We use the parts of the RRTC Later Life Planning Curriculum and co-facilitators from People First for the groups for people with disabilities. One of the goals of the workshops is for families to develop a vision for the future and write this down in what is called a letter of intent.

What We Have Learned So Far:
We have done three groups of workshops. 34 families attended these workshops. About 40% of the families were African-American; 40% were White; 20% were Hispanic. The average age of the family caregiver was 65 years old. Prior to the attending the workshops the majority of families had not made legal, financial, or residential plans. We also have a control group of 38 families for the research. These families attended one workshop on legal/financial planning, but did not attend all 7 workshops. We survey families and people with disabilities before the workshops begin and then follow up with them one year later. Outcomes so far:
  • Looking at the surveys we have so far, families who came to the workshops made more financial plans and developed a vision for the future.
  • One group of people with disabilities started their own People First chapter.
  • Family caregivers who went through the workshops are now leading workshops within their agency.
  • Three families went on waiting lists for services and two individuals with disabilities moved into residential placements.
  • With the help of the families in the project we developed a Future Planning Resource Guide for Illinois.
We just started 3 more groups in Chicago. We also received a grant from the Department on Aging to do groups in rural southern Illinois this spring.

How You Can Help:
Most families brought their relatives with disabilities to the workshops. However, what can we do to include them more in future planning?

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