Double Jeopardy Families

This article was written by Sue Gregg, the Midwest Regional Director for Caregiver Homes.

Double Jeopardy is a term used to describe families that are comprised of elderly caregiver parents providing supports to their aging children with intellectual/developmental disabilities (ID/DD). What creates the “double jeopardy” besides the effects of aging and disability status of the parent and adult child? Many of these families have never reached out for public services within their state or local agencies for intellectual and developmental disabilities.

As recent as the mid-1900s, the life expectancy for people with ID/DD was less than 30 years. Many parents were told not to worry about planning for their children’s future, as their children would not out live them. Many were institutionalized or kept hidden at home. By the 1980s, the difference in life expectancy was only 17 years less for those with ID/DD than the general population. Today, the life expectancy is the same as the general population unless there are underlying medical conditions.

Here are some statistics:

• It is estimated in the US today, there are 641,000 individuals with intellectual/developmental disabilities over the age of 60 and given the effects of the “Baby Boomers,” that number will rise to 2.1 million by 2030.
• 76% of these individuals are cared for at home. In 25% of these households, the parents are over age 60, and the average age of the person with ID/DD is 38 years. It is also not uncommon for the adult child to care for their aging parent.

Many parents now wonder: Who will care for my child when I’m gone? Where are they going to live? Who is going to pay to take care of them? These are all valid concerns and many times when not answered or planned for, the person with ID/DD may end up in a location that the parents had worked so hard to avoid. There are resources available should you be a potential Double Jeopardy Family or know someone who could benefit from learning more. Information on home and community-based services available in your state can be found through the state agencies for intellectual/developmental disabilities, state agencies for aging and local Area Agencies on Aging. Many states also have regional agencies through county governments and Aging and Disability Resource Networks (ADRNs).