Promoting Life Planning for Older Adults With Developmental Disabilities
by Kathryn B. McGrew & Alexa Murray
Families of individuals with mental retardation and developmental disabilities
(MR/DD) who were born in the middle of the 20th century are faced with two
risks not anticipated just a few decades ago: Due to frailty or chronic illness,
aging family members may lose their capacity to provide care or support for
their adult children with MR/DD, and the older adults with MR/DD themselves
may outlive their primary family support system. The Ohio Departments of Aging
and Mental Retardation refer to such circumstances--in which families may
need both aging and MR/DD services--as "double jeopardy."
Planning on the part of both public services and families is required to
promote continuity of care and to secure the futures of individuals aging
with MR/DD. Although families can make a range of legal, financial, housing
and other plans, most do not. They thereby leave themselves woefully underprepared
for the day when their capacity to provide care and support is diminished.
In response to this issue, the Butler County, Ohio, Board of Mental Retardation
and Developmental Disabilities (BCBMR/DD) established the Life Planning Service
(LPS) in April 1998.
Staffed by one full-time professional, LPS helps aging families plan for
the ongoing welfare of a member with MR/DD. The program provides information
and resources, primarily in the domains of financial, legal, residential and
daily living support. Program components include individual and family consultation;
educational seminars for parents, staff and legal professionals; and a resource
clearinghouse for reference and media materials, including Internet resources.
Eligibility requirements currently limit participation in LPS programs to
parents or primary caregivers ages 65-plus whose family member with MR/DD
is living at home; in addition, the clients must live within the BCBMR/DD
service area. LPS plans to loosen age and relationship criteria as the program
develops. Eligible LPS participants are recruited from BCBMR/DD staff referrals,
from family members seeking assistance, and from families already receiving
BCBMR/DD services.
Researchers at Scripps Gerontology Center, Miami University, Oxford, Ohio,
have conducted an evaluation of the first two years of LPS. The researchers
identified a set of tasks necessary to achieve Life Planning Service objectives.
Each of these steps or tasks, represented by the acronym support (drawn from
the action-oriented terms that characterize the program), represents a place
where planning can encounter obstacles:
Sensitize. LPS must raise the awareness of individuals with MR/DD,
families and related professionals about the need and capacity for planning.
LPS uses human-interest media outlets to sensitize families to these issues,
and employs a combination of in-service training and independent study to
educate professionals. Sensitizing work must be regarded as fundamental and
ongoing; all the tasks listed below are additional opportunities to increase
awareness and understanding of planning issues.
Unite. In the first 15 months of its existence, LPS activities focused
on laying program groundwork, which included building communication, cooperation
and coalitions among all the significant actors. Strategies include an LPS
advisory committee consisting of consumers, family members and professionals;
intra- and interagency committees; outreach to legal and financial professionals;
collaborative activities with related agencies and organizations (for example,
mental health groups); and outreach to family organizations and peer support
groups.
Prepare. Even when families are able to think about planning, they
may not know where to begin. Activities to prepare families and professionals
for planning include face-to-face family consultations and separate seminars
for families and professionals. In addition, LPS is currently developing resource
manuals.
Plan. Plans are negotiated arrangements, often arrived at through
a slow, incremental process. Families' abilities to achieve and commit to
a plan vary widely. Some LPS clients have taken major financial and legal
steps readily, while others find the process painstaking, even agonizing.
The planning process may not progress steadily but may move forward in fits
and starts, punctuated by long periods of inactivity.
Organize, Orient, Operationalize. Having a plan does not ensure its
implementation or effectiveness. Plans require organization to be fulfilled;
consumers and family members must be oriented to the roles, tasks and activities
inherent in each plan. LPS must prepare individuals with MR/DD and their caregivers
for the realities of change in care and support. Family-customized resource
manuals will be used as tools to organize important information and documents
necessary to the execution of the plan, including a letter of intent. In the
case of new living arrangements, orientation may mean teaching consumers new
skills. When appropriate, LPS may also assist in operationalization of the
plan by testing and monitoring changes in housing or legal and FInancial arrangements,
to ensure a smooth transition and more satisfactory outcome.
Remind, Review, Reinforce, Refine, Revise. Many kinds of circumstances
can change. Families need to be reminded to update their wills, trusts and
other important legal documents. Plans may also be refined or revised. One
of the tasks of LPS is to reinforce planning and to affirm the logic of each
plan, even in the face of wishful thinking and unrealistic optimism.
Trust. A life-planning program needs to trust the process, the plan
and the people. In addition, it must earn the trust of program participants;
trustworthiness is essential to program success.
Facing New Challenges
The support tasks identified above represent a very complex set of challenges
for a life planning program. Having established a foundation of support in
its first two years, LPS faces new challenges: increasing consumer involvement
in life-planning decisions when appropriate; including younger families in
the planning process; building outreach and support to siblings; building
a legal and financial support base; attracting media attention; and building
on collaborative relationships with agencies and professionals doing related
work. In addition, efforts to increase LPS personnel through the use of volunteer
peer educators and consultants are being considered.
Even as it continues to grow and evolve, the program is making its mark.
As one family member said that before LPS was available, she "didn't know
where to turn." Her family now has pre-crisis plans in place, and Life Planning
Service has been instrumental in that achievement.
Kathryn B. McGrew is an associate professor in the Department of Sociology,
Gerontology and Anthropology, Miami University, Oxford, Ohio, as well as a
research fellow at the university's Scripps Gerontology Center. Alexa J. Murray
is a research gerontologist at the reach and able Projects, Thomas Jefferson
University, Philadelphia.
