Siblings of disabled, facing common struggles, meet Downtown
Delilah Picart doesn't know when, but someday she will become her brother's primary caregiver.
And unlike most siblings of a person with a disability, Picart has spent years preparing.
“But it's kind of like parenting,” Picart said. “You can read all the books in the world, but you never know until it actually happens.”
Picart spoke Thursday at the National Sibling Leadership Network Conference at the Wyndham Grand Pittsburgh, Downtown.
The conference brought together researchers, advocates and families to discuss challenges facing siblings of people with disabilities and to encourage families with a disabled person to start talking now about the future.
“It's a very tender topic,” said Don Meyer, director of the Sibling Support Project in Seattle, which helps connect siblings of people with disabilities through online forums. “Parents are understandably reluctant to talk about something as uncertain as the future of a child with a disability. But it's important.”
Nearly 5 million people in America have autism, Down syndrome and other intellectual and developmental disabilities. Most of them live at home with a caregiver, often a parent.
When the disabled child outlives the parents, siblings usually are next in line to assume caregiver responsibilities.
Typically, they are not prepared, said Katie Arnold, executive director of the Sibling Leadership Network.
“The siblings don't live it and breathe it the way the parents do,” said Katie Arnold, executive director of the Sibling Leadership Network. “But then the siblings are just thrust into a situation like that, and it affects everyone.”
Picart, 32, of Shadyside, is an actor who recently appeared alongside Tom Cruise in the movie “Jack Reacher,” filmed in Pittsburgh.
She said she has always felt a responsibility to look after her younger brother, Eric, 30, who has Fragile X syndrome, which results in intellectual disabilities and social anxiety. He lives in the family's hometown New York City with their mother, Vivian, 71, who is Eric's full-time caregiver.
Wanting to help her mom, but living hours away, Picart began talking to her mother about Eric's long-term care years ago.
“We were on vacation and she said, ‘I'm doing all I can so you can live your life,' ” Picart recalled. “And I said, ‘but mom — he's my brother and I love him.' As his older sibling, I feel like I have a vested interest in caring for him.”
That initial talk led to years of further preparations.
“Now it's a question of figuring out all the logistics of slipping him into my life,” Picart said.
When families fail to have those sensitive talks, they must make major life decisions hastily during a time of grief, officials said.
They said it's important to include disabled siblings in discussions because while parents assume they would want to be with a sibling, that's not always the case.
“There is a range of ways to remain lovingly involved in the life of a sibling with a disability,” Meyer said. “And that doesn't always mean everybody has to live under the same roof.”
Chris Togneri is a staff writer for Trib Total Media. He can be reached at 412-380-5632 or email@example.com.