Bridging the Aging and Developmental Disabilities Service ... - rrtcadd

“Two weeks ago we
received a letter from the
state of New Jersey
stating that (our son) is
now number 776 on the
waiting list. (He) has
seven more years to wait
for residential services.
He will be 43. We will be
71. This alone is
unacceptable.” (family
member)
other organ system consequences) are of concern. 11 There is a
greater prevalence of obesity and a sedentary lifestyle among
adults with developmental disabilities than in the general
population. Their health concerns and lifestyle differences point
to the need for health promotion interventions, exercise and
nutrition programs, health behavior education, and health
screenings. Also a need exists for education of health
professionals, direct support professionals, and families and other
caregivers in addressing the health issues of adults aging with
developmental disabilities.
Community Participation. People of all ages with disabilities
want to be part of their community, and such opportunities are
especially important for older adults with developmental
disabilities who may want to “age in place”, i.e., remain in their homes or in their jobs with
adaptations for age-related changes. Some adults may want to retire from their job or vocational
training. The aging network can be a resource for linking older people with disabilities to
community activities, including volunteer work that provides opportunities to explore new
interests, develop new skills, and form new friendships.
Family Support. The majority of adults with developmental disabilities live with immediate
family members or kin. One quarter live in their own household or with a spouse, and sixty
percent, or nearly 2.9 million people, live with their family. Twenty five percent of family
caregivers are age 60 and older, and another 35% are in the 41-59 age range. 12 Only 12% of the
4.8 million Americans with developmental disabilities live in any type of formal supervised
residential setting. Nationally, nearly 123,000 persons were estimated to be on waiting lists for
residential services in 2009. 11 Life expectancy gains indicate there will be growing numbers of
two-generation elderly households of people with disabilities living with their parents. These
families remain intact out of choice or due to the shortage of alternative residential options. Both
generations will require supports to age in place. Often when parents can no longer provide care,
siblings may be called upon to take over that role with little formal support provided to them.
Although all states now fund family support in the form of cash subsidies and/or direct services,
in 2009, national family support expenditures of $3.8 billion accounted for only 7% of total
national developmental disabilities expenditures. Only 17% of families caring for a relative with
a disability at home received family support. 12 The gap between need and available public
resources is expected to increase with the looming demographic challenges.
These families often first come to the attention of the aging network through referrals from
hospital discharge planners, friends, and neighbors, especially when the older parents need
support due to age-related changes in health and function. In some households, the person with a
disability may care for an aging parent. These families need to make informed decisions about
their own support needs, as well as help the person with a disability plan for his or her future.
Bridging the Aging and Developmental Disabilities Service Networks Page 12