Future Planning Curriculum for Families & Adult Relatives with Developmental Disabilities (Heller/Caldwell)

Name of Intervention: The Future is Now: A Future Planning Training Curriculum for Families and Their Adult Relatives with Developmental Disabilities

Principal Investigator (s): Tamar Heller and Joe Caldwell

Institutional Affiliation: Rehabilitation Research and Training Center on Aging with Developmental Disabilities, Department of Disability and Human Development, University of Illinois at Chicago

1. Summary of Intervention

The Future is Now intervention is a peer support intervention developed to support aging caregivers and adults with developmental disabilities in planning for the future. The intervention consists of a legal/financial training session followed by 5 additional small-group workshops. The five workshops cover the following topics: 1) Taking the big step, 2) Building relationships and skills, 3) Housing, 4) work, retirement and leisure, and 5) Who will be the keeper of the drea,? Families and individuals with developmental disabilities help to co-facilitate the workshops and support each other in discussions about the future and in sharing information. Each workshop lasts approximately 2 ½ hours and are typically spaced two to four weeks apart.

The goals of the intervention are to: 1) increase concrete future planning activities taken by families; 2) impact subjective appraisals of caregivers (decrease feelings of burden and increase feelings of satisfaction and self-efficacy); and 3) increase choice-making opportunities and inclusion of individuals with developmental disabilities in the future planning.

In a randomized control study, the intervention significantly contributed to families completing a letter of intent, taking action on residential planning, and developing a special needs trust. Compared with the control group, caregiving burden significantly decreased for families in the intervention and daily choice-making of individuals with disabilities increased in the one-year follow-up.

Key search terms:

Future planning, psycho-educational groups, developmental disabilities

2. Intervention Materials

The curriculum The Future is Now: A Future Planning Training Curriculum for Families and Their Adult Relatives with Developmental Disabilities can be obtained from the Rehabilitation Research and Training Center on Aging with Developmental Disabilities, Department of Disability and Human Development, University of Illinois at Chicago, 1640 W. Roosevelt Road, MC 626, Chicago, IL, 60712. The website is www.rrtcadd.org and it can be obtained through its Clearinghouse.

The phone numbers are 312-413-1860 or 800-996-8845 or for relay access: 1-800-526-0844 or 312-413-0453.

3. Implementing the Intervention

Training: There is a train the trainer program available. We are also developing an online version. It is important to recruit good peer trainers who have done their own future planning activities and to train them adequately.

Costs of implementing the intervention have not been estimated.

4. For more information

Supporting Aging Caregivers and Adults with Developmental Disabilities in Future Planning, Heller, T. & Caldwell, J. (2006). Mental Retardation, 44(3), 189-202.