Longer Lifespan Brings New Set of Challenges
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.
One family’s experience
Lori and Glenn Funk of Nashville applaud the work being done at VKC. The landscape has changed in the 17 years since their middle child, Rob, was born with Down syndrome.
“At the time he was born, I did most of the research on my own,” recalled Lori Funk. “My pediatrician was great. Rob was her first patient with Down syndrome. There wasn’t much else available in terms of support and information.
“I remember reading this book “Children with Down Syndrome.” It devastated me to read that I would outlive my child. I remember crying and crying,” Funk said.
Rob joined big sister Mary Landon. Six years later brother Sam, now 11, was born. Over time, Funk learned that Rob would more than likely outlive her. She and her husband prepared a special needs trust to provide for him. But they also looked to their oldest child for support as well.
“We have always tried to instill in her a sense of responsibility,” said Lori Funk of her daughter, 19. “If I died today, she could completely and totally take care of Rob. She knows his wants and needs and everything about him.”
When she turned 18, Mary Landon did not hesitate to accept her parents’ request.
“If something were to happen to my parents, I have been briefed on what to do,” said Mary Landon, a freshman at Princeton University. “I’m ready for the responsibility and I didn’t think twice about it.
“If Rob was mine to look after, it would be just like looking after anyone. I know it will be harder for various reasons, but it is not going to interfere with my career path, my relationships…”
Rob has the most common form of Down syndrome, called Trisomy 21. An eighth-grader at Franklin Road Academy, he is enrolled in Heart to Heart, a parallel educational program for students with Down syndrome. It is one a few of its kind in the country.
Although the Funks are grateful for the innovative program, they admit more attention needs to be directed at people with disabilities.
“I have always felt that there is not enough attention or money spent on people with special needs,” said Funk. “Whether it is education or the basics for day-to-day living, it takes a lot of money to give your child what he or she needs. More needs to be done.”
Hodapp and Urbano agree that despite 150 years of documentation of Down syndrome, huge gaps exist in the field of disability research.
“There are lots of questions and health issues that really haven’t been explored,” said Urbano. “With the work we are doing, we are hoping to impact public policy and empower families, clinicians and teachers.”