Unexpected Impact of Disability

THE UNEXPECTED IMPACT OF DISABILITY

By Allan Appel

The impact on the family when one of its own is disabled can’t be overstated. Everyone is affected in one way or another. And as the life expectancy of that person increases, that impact becomes much more significant.

Advances in medicine and in overall care have contributed greatly toward extending the life spans of everyone. Likewise, the lives of people with disabilities have been lengthened as well.

A good example is children with developmental disabilities. Citing researchers at the University of Illinois, the Chicago Tribune reported the life expectancy of a child with Down syndrome is nearly 60. In the 1930s, such children were not expected to live beyond 10 years.

By 2030, the number of people in the U.S. age 60 and older with developmental disabilities is expected to grow from the current 682,000 to more than 1.3 million.

Parents of aging adult children with developmental disabilities are now faced with the unexpected reality of the child’s extended life span while dealing with their own health issues as they themselves grow older. Planning for the future care of such a child is one thing. But that planning becomes skewed when it is likely the child may outlive the caregiver parent. Many children with disabilities live with elderly caregivers. Some of those caregivers are beyond age 80.

Some parents in this situation find themselves grappling with the same issue as when the child was born: home care vs. an institution. Except the factor of their own ability to be a caregiver has now come into play as they themselves are now grappling with their own health issues. Providing for the care of an aging child with a disability has become an important element of estate planning for that child’s aging parent.

Resources in the local community can assist in this critical area of life planning. An attorney specializing in elder law is essential. Contact the state or local bar association for a referral to such a lawyer. An accredited social worker can augment local community agencies to deliver needed services. The family’s physician can provide important medical information
that may impact the decision.

And don’t overlook the family’s minister or priest. In many situations, the church can play as important a role as any family member.

Allan Appel writes a biweekly column about disabilities. He can be reached c/o Scripps Treasure Coast Newspapers, 1939 S. Federal Highway, P.O. Box 9009, Stuart, FL 34994, or e-mail at aappel223@yahoo.com.