Fewer than half of parents of children with intellectual or developmental disabilities who responded to a national survey state that they have made long-term care plans for their children if the parent or other relative providing care dies or becomes incapacitated.

The more than 380 parents—primarily mothers—who responded to the survey ranged in age from 40 to 83, and their children with disabilities ranged in age from 3 to 68.

In the survey, respondents were asked whether they had completed 11 items related to planning for their children’s long-term care needs, such as identifying a successor to the current family caregiver, researching residential programs, or establishing a special-needs trust.

More than 12% of the respondents indicated taking none of these actions, according to a media release from the University of Illinois at Urbana-Champaign.

Because people with disabilities are living longer, they are increasingly outliving their parents, and planning for their future care should begin as early as possible, states the study’s lead author, Meghan Burke, a professor of special education at the University of Illinois.

“It affects everyone in the family when you don’t have plans in place,” says Burke, who has an adult sibling with Down syndrome. “You are more likely to face a crisis situation where the person has to move out of the family home, be uprooted and have their routines disrupted. A sibling, most likely, will have to jump in and pick up the reins caring for the person with disabilities—while at the same time, both siblings are having to face their parents’ mortality.”

More than 77% of the individuals with disabilities in the study lived with their parents or with another relative, while 17% lived independently with support and 6% lived in group homes.

Some parents indicated that their planning efforts were thwarted by interpersonal conflicts. According to more than 7% of the parents in the survey, the topic was too “emotionally loaded” or stressful for family members to talk about.

While more than half of the parents had engaged in three planning activities, such as locating an attorney and discussing future care plans with the child or other family members, their actions were aspirational rather than conclusive, Burke adds, in the release.

Financial constraints were significant barriers to succession planning for more than 46% of families; however, an even greater problem, according to more than 61% of parents in the study, was the dearth of residential, employment and recreational services that suited their child’s particular needs and abilities.

A large number of parents—more than 39% of those in the survey—said their greatest impediment was simply obtaining information on developing a care plan for their child with disabilities, the release continues.

Burke notes that fixing a problem such as access to information could be relatively simple and inexpensive, as training programs on developing long-term care plans for people with disabilities already exist that could be adapted to different languages and provided to families over the web.

“We can make some really positive changes here without spending a lot of money to do it,” she shares.

[Source(s): University of Illinois at Urbana-Champaign, Science Daily]