Many Parents Not Planning For Future of Children With Disabilities According To New Study

A web-based national survey asked parents of individuals with intellectual and developmental disabilities to state whether they had completed 11 items related to planning for their offspring’s long term needs, such as identifying a successor to the current caregiver in the event s/he died or became incapacitated. More than 380 parents, mostly mothers, completed the study. The parents who responded ranged in age from 40 to 83 with offspring from ages 3 to 68.  The study suggests that fewer than half of parents of an individual with intellectual or developmental disabilities made long-term plans about who will take over their family member’s care in the event of the caregiver’s death or incapacity.

According to the study’s lead author, Meghan Burke, a professor of special education at the University of Illinois, “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.”

More than 12 percent of the parents reported that they had taken none of the 11 action items to ensure that their child’s needs would be met in their absence.

More than 46 percent of families responded that financial constraints were significant barriers to succession planning.

Some parents indicated that their planning efforts were disrupted by interpersonal conflicts such as disagreements with the other parent about what should happen or by family members’ refusal to discuss alternative arrangements. More than 7 percent of participants said 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, according to lead author Professor Burke, their actions were aspirational rather than conclusive. Conclusive actions included making residential arrangements or writing a letter of intent to guide future caregivers or legal guardians in making decisions about the types of care ther person with disabilities ought to receive.

More than 61 percent responded that a dearth of residential, employment and recreational services suited to their loved ones needs was the barrier to planning.

Burke said that “In Illinois alone, there are more than 20,000 people with disabilities on waiting lists for services.  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.”

More than 39 percent of parents said their greatest impediment to planning as simply obtaining information on developing a care plan for their offspring with disabilities. Professor Burke responded that the problem of access to information is a relatively simple and inexpensive problem to fix as training programs on developing long-term care plans for people with disabilities already exist and could be adapted to different languages and provided to families over the web.

The paper “Identifying the correlates and barriers of future planning among parents of individuals with intellectual and developmental disabilities” is available from the University of Illinois News Bureau by emailing and putting  “Request for paper by Meghan Burke on Future Planning” in the subject line.

The study has been accepted for publication in the April edition of the journal Intellectual and Developmental Disabilities.

Sources for the article: “Study: Many parents of children with disabilities don’t make care plans” by Sharita Forrest, Education Editor Illinois News Bureau, February 9, 2018; “Few Parents Plan For Future Of Children With Disabilities, Study Finds” by Courntey Perkes, Disability Scoop, February 22, 2018