Grants and Contracts Details
Description
The Interdisciplinary Human Development Institute (IHDI) - University Center
for Excellence - and the Sanders-Brown Center on Aging, University of Kentucky
propose a collaborative initiative to address an issue of critical importance both in
Kentucky and nationally - sustained life planning and supports for aging caregivers and
family members of individuals with mental retardation and developmental disabilities. In
Kentucky alone, Braddock (2002) estimates that there are 10,304 caregivers 60 years and
older who are providing a significant component of care to their adult children with
developmental disabilities. These caregivers have the dual life-task of caring for their
own needs during their retirement years, while continuing to provide essential supports to
adult children. These caregivers need not only immediate access to services and supports
to which they are entitled in the present, but the critical information needed to plan for
the transition of the care and supports for their adult child with a developmental disability
when they are no longer able to provide those services themselves.
IHDI and Sanders-Brown propose, in collaboration with regional and state service
agencies in aging and developmental disabilities and with the support of older parent
consultants who themselves have successfully planned for the care of their children, a
comprehensive initiative to:
• test the methodology of a model for supporting aging caregivers in life planning
• train and provide assistance to families (including both aging parents and siblings)
on accessing current services and planning for the future; • develop a network of older parent and family consultants (mentors) who could
continue to provide support throughout the region;
• develop a network of attorneys specializing in estate planning for families of adult
children with developmental disabilities; and
• develop a comprehensive website for both families and providers on the needs of
aging caregivers and their adult children with developmental disabilities.
This project will focus on the central Kentucky Bluegrass Region (which includes
Lexington and surrounding counties, including several counties which are considered part
of Appalachia). Teams consisting of caregivers, other family members and service
providers will be invited to attend project trainings; upon the completion of training,
participants will have the opportunity to receive technical assistance from project mentors
as they address life planning needs and essential services and supports in their lives.
We will evaluate the outcomes of this project in terms of the number of aging
caregivers and families who subsequently a) engage in life and estate planning for
themselves and their adult child, b) report increased knowledge of critical services for
themselves and their family member, and! c) report increased hope for the future and!or
improved life-outcomes as a result of the supports they have received. We will develop
at least two case studies (one per year) illustrating the process for planning essential life
supports in both rural and urban areas of the state. Finally, we will develop a data-base of
the professionals who report having the skills and tools to support aging caregivers and
their adult children with developmental disabilities as a result of this project. This project
has implications for older families in the states in the Retirement Research Foundation's
priority service region, especially given the aging demographics of these states. We will disabilities (University Centers for Excellence) and aging (Sanders-Brown).
Finally, we would like to highlight the changes made in this proposal from our
original Hope for Tomorrow proposal submitted to the Retirement Research Foundation
in May 2003. The current proposal focuses on one region of the state (a region that
includes both urban and rural areas) in order to provide more sustained support to
families over the project period. Secondly, the current proposal will support more family
teams through the full planning process than the original proposal - up to 96 teams are
proposed for support under the current proposal, compared to a maximum of 80 teams in
the original proposal. Third, we are proposing to develop a Kentucky version of the book
Safe and Secure: Six Steps to Creating a Personal Future Plan for People with
Disabilities (Etmanski, Collins, Cammack, 1997) to more directly address the needs of
Kentuckians and insure a planning tool of value for years to come. Finally, and most
significantly, the current proposal's budget is approximately half of the original proposal.
This has been achieved through IHDI's commitment to support half of the Project
Coordinator's committed time to this salary (we are asking RRF for only the other half)
and IHDI's commitment to support five of the parent/family mentor consultant and travel
costs (we are asking RRF for support for the other five).
This project will require only minimal start-up time. As noted in our proposal,
training and planning support to families would be delivered in two phases. The
educational presentation for Phase I has already been developed, as well as related
materials, and the Kentucky version of Safe and Secure will serve as the planning tool for
the second phase: the advanced half-day planning workshop for families.
Status | Finished |
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Effective start/end date | 10/1/04 → 1/1/07 |
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