February 9, 2012

From Vanderbilt Medicine: Longer Lifespan Brings New Set of Challenges

by Jessica Pasley

The life expectancy of adults with Down syndrome has nearly doubled in the last 40 years. What would be perceived as wonderful news for families with a child with the most commonly occurring chromosomal condition is setting off alarms within the disability community.

And researchers at the Vanderbilt Kennedy Center (VKC) are leading the charge.

“We have been calling it a ‘demographic time bomb,’” said Robert Hodapp, Ph.D., professor of Special Education and director of Research at the University Center for Excellence in Developmental Disabilities (UCEDD). “What we are seeing is that adult service systems in most states, including ours, are limited.

"We, as a society, don’t spend a lot of money on caring for adults with disabilities or providing appropriate services for them.”

VKC researchers are working to inform policy makers at the local, state and national level about the expanding needs for support and services.

“One question that needs particular attention, especially if most individuals with disabilities continue to live in their parents’ homes, is who is going to care for this population when the parents can no longer do so?”

Hodapp, along with colleague Richard Urbano, Ph.D., research professor of Pediatrics and director of Evaluation at UCEDD, have spent years examining these issues, using both large-scale national surveys and the Tennessee vital statistics databases.

“We are finding that future caregiving is anticipated more often by the family’s daughters (as opposed to sons), those with good relationships with the brother/sister with disabilities, and when parents themselves are more (not less) able to care for the brother/sister.

“Our job is to develop policies and interventions that equip all family members with the knowledge and skills necessary to assume such lifelong commitments,” Urbano said.

 

Read the whole story by Jessica Pasley from the current edition of Vanderbilt Medicine.