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What happens when children with disabilities 'age out?'

The common term commonly used in the disabled community refers to when a child outlives his or her parents and is still in need of constant care.
Posted at 1:33 PM, Mar 25, 2022
and last updated 2022-03-25 18:49:00-04

BUFFALO, N.Y. (WKBW) — Maggie Buckley is terrified for her daughter Carly.

"I'm absolutely scared for her future," said Buckley.

Maggie's daughter is a 39-year-old woman with Down syndrome.

She struggles with communication, and isn't able to take care of herself independently. For the majority of her life, Carly has had constant support.

Whether that support is from her mother and father, a one-on-one aide, or even state-funded caregivers, she has always had and needed a helping hand by her side. She needs help with tasks like eating, cleaning, and living an independent life.

"She needs constant care. We're happy to provide it to her. We love her, she's our daughter . . . but what happens when there's no me," said Buckley.

Buckley now faces a fear that is something many parents that have children with disabilities constantly lose sleep over, the concept of "aging out."

The life expectancy of those with Down syndrome is approximately 60 years old, according to the United States Center for Disease Control (CDC).

"It is way more common than you think, especially when it comes to the health of the parents," said Dr. Ted Andrews, (MD., Ph.D) Attending Physician at the Neurodevelopment Program at Robert Werner inside Oishei Children's Hospital.

If your child has disabilities and you are concerned with them "aging out," what are the solutions-- especially if they can't take care of themselves?

“First off, we look to determine the level of severity of the disability. Are they able to take care of themselves? If not, we need to assign guardianship. Then we work with programs to identify they’re level of independence ... To determine what they can do. Can they be in a group home that’s run through the state? Can they be in assisted living where someone just checks on them? Or can they be totally independent," said Dr. Andrews.

For children with higher-degrees of independence:

  • Aspire WNY hosts "43 group homes around WNY that support 320 individuals," according to their website.
  • Home of My Own WNY is a group organized by mothers of disabled children to create a group space of individual apartments, where residents will bring their own support to the residential community. They are looking to "create apartment communities tailored to independent individuals with intellectual and developmental disabilities who desire to live in a safe, social and integrated community with lifelong sustainability," said Deborah Flynn, the organizations founder.

"But those options don't work for my daughter Carly, they don't work for someone who needs constant care," said Buckley.

Buckley has been organizing a movement to bring a "L'Arche" to Buffalo, a international nonprofit that creates group homes where social workers and those with disabilities can live side-by-side.

"It's all about making my daughter, and all children with disabilities feel loved and at home even if I can't be the one to give them that anymore. I want her to be set for life," said Buckley.

Currently "L'Arche" has not responded to any requests for comment from 7 News about their intention to bring a facility to Western New York.

There are currently 17 active "L'Arche" communities in the United States, with locations in Syracuse, Erie (PA), and Cleveland being the closest of note.

"I hope that my daughter can live in a home just like mine after I'm gone," said Buckley.

Buckley's grassroots group, "Friends of L'Arche," will be hosting a informational meeting at the St. Bernadette Church in Hamburg on March 29th at 7PM.

"We encourage all to come and voice their support for our children with disabilities. To come together and be part of something great for our community.