Study: Parents of special needs children often struggle with long-term planning

CHAMPAIGN, III — Imagine having a child who will never grow up and leave the nest on their own. This is not some winsome Peter Pan fantasy, but a reality for many parents of children with special needs. Add to that the fact that people with disabilities are living longer, quite often outliving their parents. It would seem with all that there is to consider, planning for their children’s long-term future would be a high priority for these parents. Unfortunately, that is often not the case–for a number of reasons.

According to a recent study by the University of Illinois, fewer than half of parents of children with intellectual and developmental disabilities establish a long-term plan for their sons and daughters. Questions such as who will take over the responsibility for the child’s care if the caregiver dies or becomes too ill or too old are left to chance.

Boy with Down syndrome connects with his dad
It would seem with all there is to consider, planning for their children’s long-term future would be a high priority for parents of special needs kids. Unfortunately, that is often not the case — for a number of reasons. (Photo by Nathan Anderson on Unsplash)

“It affects everyone in the family when you don’t have plans in place,” says Meghan Burke, the study’s lead author, a professor of special education at the university, in a release. Burke also understands the situation on a personal level, having 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.”

For the study, 380 parents answered a web-based national survey about planning for their children’s future. Parents were mostly moms ranging in age from 40 to 83 who cared for special needs children ranging in age from 3 to 68. Examples of items in the survey included choosing a person to take over the role of family caregiver, setting up a special needs trust and researching residential programs. At least 12 percent of the participants admitted to having done none of the 11 items on the survey.

Adults who have intellectual or developmental disabilities are much more likely to end up in institutional settings if plans are not already in place when the parental caregiver dies or can no longer provide the care, Burke said. Of the special needs people in the study, more than 77 percent were living with either parents or another relative. Just 17 percent were living independently with support and 6 percent were in group homes.

Parents admitted that they found planning efforts difficult. Although more than half of parents surveyed had begun three planning activities, in most instances no definitive plans resulted. These planning activities included arranging for residential placement or writing a letter of intent to guide future caregivers about preferences.

Sometimes the problem with reaching a consensus is a result of conflicts with the other parent about best choices. Sometimes other family members simply will not consider options. More than 7 percent of participants called the topic too “emotionally loaded” to discuss.

Another factor for 46 percent of families is financial limitations.

For more than 61 percent of parents, an even greater problem is the lack of residential, employment and recreational services that match their child’s specific needs and abilities.

Because demand outstrips supply, people with disabilities often end up on long wait lists. “Nationally, 75 percent of people with intellectual and developmental disabilities don’t have access to formal services,” says Burke. “It may be that many families think why plan for services when there are no services currently available to them.”

For more than 39 percent of the parents surveyed, just finding information to create a care plan is a huge hurdle. While it may not resolve the gap in services, Burke says that providing planning information to parents would be an easy and inexpensive fix.

Burke adds the information could be more accessible if existing training programs on long-term-care plans better addressed language differences and was made available on the web. “We can make some really positive changes here without spending a lot of money to do it,” she says.

The study was published in the April 2018 edition of the journal Intellectual and Developmental Disabilities.