Due to today’s medical advancements, people with disabilities are living longer and many are outliving their parents. Thus, planning for a disabled person’s long-term care, particularly after the parent has passed, should be completed as early as possible.
A new study finds, however, that fewer 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 they or another caretaker dies or becomes incapacitated.
For the study, more than 380 parents — primarily mothers — of individuals with disabilities completed 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 ages three to 68.
The respondents were asked whether they had completed 11 planning activities related to caring for their child’s long-term needs, such as identifying a future caregiver, researching residential programs or establishing a special-needs trust.
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.
According to the findings, more than 12 percent of the parents had not completed any of these steps to ensure that their child’s needs would be met if the parent or other caregiver died or was otherwise unable to assist the adult or minor child with disabilities.
Adults with intellectual or developmental disabilities are likely to be placed in institutional settings if care plans are not in place when the parent or caretaker dies or becomes too old or too ill to continue.
“It affects everyone in the family when you don’t have plans in place,” said the study’s lead author, Meghan Burke, a professor of special education at the University of Illinois, and who also 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 parent’s mortality.”
Some parents said that their planning efforts had been thwarted by interpersonal conflicts such as disagreements with the other parent about what should happen or by family members’ refusal to talk about alternative arrangements. Around seven percent of the parents said the topic was too “emotionally loaded” or stressful for family members to discuss.
While more than half of the parents had participating 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 said.
Financial limitations were significant barriers to future care planning for more than 46 percent of families; however, an even greater problem, according to more than 61 percent of parents in the study, was the inadequacy 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. It may be that many families think why plan for services when there are no services currently available to them.”
Several parents (more than 39 percent of those surveyed) said their greatest obstacle was simply obtaining information on developing a care plan for their child with disabilities.
Unlike systemic problems such as a lack of services, access to information is a problem that’s fairly easy and inexpensive to fix, Burke said. In addition, training programs to help families develop long-term care plans for disabled people already exist, and these can be adapted to different languages and provided to families online.
The study has been accepted for publication in the April edition of the journal Intellectual and Developmental Disabilities.