How To Prepare For When A Child With Disabilities ‘Ages Out’ Of The System

Paddy Ramsay started volunteering at Texas CASA – an organization that pairs advocates with children in the state child protective services system – after she retired from her career in broadcasting 10 years ago. At CASA, Ramsay says she “fell in love” with a child with special needs named Naila, whom she adopted in January 2017. Ramsay says Naila, 18, is autistic, she doesn’t speak and she loves to run.

“This child is moving every single minute,” Ramsay says.

Ramsay says Naila acts out like any kid, but she forgets all that when Naila smiles.

“She’s got the most beautiful smile you can ever imagine,” Ramsay says.

Naila uses her tongue, primarily, to explore the world around her.

“She doesn’t lick; she uses the tongue to touch,” Ramsay says. “There probably isn’t anything in Austin that tongue hasn’t touched.”

Now that Naila is an adult – she turned 18 in April – Ramsay has had to adjust. Naila no longer receives Social Security or Medicaid benefits, and Ramsay says Naila’s care costs at least $5,000 per month. Now, she has to apply for adult Social Security and Medicaid benefits for Naila, and Ramsay says it’s been a frustrating process.

“Each person was wonderful, genuinely wanted to help me, but the frustration is the right hand does not know what the left hand’s doing,” Ramsay says of the government agencies.

She says more children with disabilities need to be adopted, but people looking to adopt them need to know what to expect, and the agencies need to do a better job of communicating that.

When a child with disabilities turns 18, as Paddy Ramsay’s daughter Naila just did, many things change. Even if that child doesn’t function in ways that other 18 year-olds do, the government still considers them, legally, as adults.

Mary Felps, an attorney who specializes in Social Security issues, says there are some things those parenting children with disabilities can do to prepare for when their child reaches legal adulthood. For one thing, she says they can get some benefits if their adult child is still in high school. But there are restrictions.

“The landscape changes as far as the categories that have to be met in order to qualify for Social Security as an adult,” Felps says.

There are four categories that Felps says the Social Security Administration uses to determine the benefits for a disabled person over the age of 18. The first evaluates the degree to which an individual can understand, remember or apply information. She says that relates to how well a person would be able to take instruction at a job and then act on that instruction.

“If they cannot do that, then they would qualify for adult disability benefits,” Felps says.

The second category is about how well a person interacts with others, including the public, coworkers or a supervisor.

The third category is about pace.

“You would watch for this in your child in terms of being able to focus on the task, whether play or work: can they keep their mind on it for two-hour intervals? Can they stay on that task and not give up and walk away? And the last is, can they do it in a normal speed?” Felps says.

The fourth category is the degree to which the person can take care of their personal needs like hygiene, food preparation and getting to work on time.

For Ramsay, whose daughter is non-verbal and can’t use the bathroom on her own, Felps says Ramsay should ask a doctor to document Naila’s condition and show that documentation to the government. Felps also suggests that Ramsay keep a diary of Naila’s needs.

“That shows that the child is wearing diapers, or adult protective underclothing,” Felps says. “And letters from other people: family members, friends, best of all a teacher … that the child has had coming into the home to assist in learning.”

She says a teacher or caseworker who sees the child regularly could determine the child’s “functional age,” which the parent could then report to the government.

Felps says it’s important for people in Ramsay’s situation, who will be caring for Naila in her adult years, to know the rules when it comes to federal disability benefits. But she says it’s complicated, and recommends getting help.

“It’s unfortunate, but you need to hire a lawyer … if not a lawyer, there are certified representatives,” Felps says. “But you want to be sure that this person is going to be very interested and invested in your case.”

She says if they don’t understand the child’s disability, or if they don’t spend quality, in-person time with the parent or child, she says keep looking.

“Hire somebody else,” she says.

Written by Geronimo Perez and Caroline Covington.