Less than half of parents of children with intellectual and developmental disabilities make long-term plans about who will take over their child's care if the parent or other relative providing care dies or becomes incapacitated, a study of the University of Illinois (UI) said.
More than 380 parents, primarily mothers of individuals with disabilities participated in a web-based national survey about planning for their children's care. The parents who responded to the survey ranged in age from 40 to 83, and their offspring with disabilities were aged 3 to 68.
Participating parents were asked whether they had completed 11 items related to planning for their child's long-term needs, such as identifying a successor to the current family caregiver, researching residential programs or establishing a special-needs trust.
More than 12 percent of the parents reported that they had taken none of these actions to ensure that their child's needs would be met if the parent or other caregiver died or was otherwise unable to continue assisting the adult or minor child with disabilities.
Adults with intellectual or developmental disabilities are significantly more likely to be placed in institutional settings if care plans are not in place when the parent providing care dies or becomes too old or too ill to continue, said the study's lead author Meghan Burke, a UI professor of special education.
"It affects everyone in the family when you don't have plans in place," said Burke, "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."
More than 77 percent of the individuals with disabilities in the study lived with their parents or with another relative, while 17 percent lived independently with support and 6 percent lived in group homes.
Some parents indicated that their planning efforts were thwarted by interpersonal conflicts, such as disagreements with the other parent about what should happen, or by family members' refusal to discuss alternative arrangements. According to more than 7 percent of the parents in the survey, the topic was too "emotionally loaded" or stressful for family members to talk about.
While financial constraints were significant barriers to succession planning for more than 46 percent of families, an even greater problem for more than 61 percent of parents in the study was the dearth of residential, employment and recreational services that suited their child's particular needs and abilities.
"In Illinois alone, there are more than 20,000 people with disabilities on waiting lists for services," Burke said. "Nationally, 75 percent of people with intellectual and developmental disabilities don't have access to formal services."
More than 39 percent of those surveyed said their greatest impediment was simply obtaining information on developing a care plan for their child with disabilities.
The study has been accepted for publication in the April edition of the journal Intellectual and Developmental Disabilities.