When a Special Needs Child Grows Up

From left: Dave, Trevor, Sheila and Blakely Bierwert

From left: Dave, Trevor, Sheila and Blakely Bierwert

“We weren’t even thinking in those terms. You think automatically, he’s our kid. But when he’s 18 he becomes his own person. So if you don’t have that guardianship you lose the legal right to make decisions for him”

Trevor Bierwert’s a handsome young man with an open, easy smile. And he has epilepsy.

He started getting seizures before he was four years old, and from four to six they got progressively worse and worse.

“He was wearing a helmet because they would knock him to the floor,” his mom Sheila said. “He split his chin, he’d hit his head…”

It was bad. So bad that when he was six they took him to Michigan for surgery, where 75 percent of his right brain was removed. When he came out of it the left side of his body was paralyzed but he was, blissfully, seizure free. With physical therapy and hard work he regained most of his movement.

But when he was 16 the seizures came back.

I sat on a park bench with the Bierwerts as they told their story– Mom Sheila, Dad Dave, little brother Blakely. Trevor’s two sisters were unable to make it to the interview.

And there’s Trevor, who is now 23 years old and still having seizures at least every other day.

Trevor is healthy and happy and athletic—he participates in Special Olympics. In fact, the Bierwerts have been chosen “Ohana of the Year” by the Special Olympics.

But the seizures have left him with the academic level of about kindergarten. He’ll need services and support all his life.

Every parent of a special needs child knows how challenging it is to procure all the services that child needs. When he was in school the Department of Education provided Trevor with occupational, physical and speech therapies, as well as an aide.

But what happens when the child grows up and ages out of that support system?

The Bierwerts had people they could turn to for advice. One was the transition coordinator at Kaiser High School, who started talking to them about Trevor’s future well before he graduated.

The other was Scott Suzuki, a local attorney who specializes in special needs planning and elder law. He’s also the President of the national Special Needs Alliance.

Suzuki described what happens to these kids and their families as “hitting a wall.”

“That’s often what it feels like,” he said, “ As they’re growing up they get services from the Department of Education. When they become adults they have to make all their own decisions.”

And that, said Sheila, is a scary proposition.

“We didn’t know that we’d have to apply for guardianship. There are all these things that you really need to do.”

The guardianship was critically important.

“Being able to make decisions for somebody who can’t,” said Dave. “Otherwise you wouldn’t have the right to talk to his doctors, technically, or request information or set up appointments. It’d be up to him.

“We weren’t even thinking in those terms. You think automatically, he’s our kid. But when he’s 18 he becomes his own person. So if you don’t have that guardianship you lose the legal right to make decisions for him”

And the process to get that guardianship becomes much harder after the child turns 18.

Suzuki set up the Bierwert’s guardianship and trust. He drew up the legal documents and set up their court appointments so they could go before a judge and present their case. He was their attorney and their coach.

The family was lucky they had the funds to hire an attorney. Many families don’t. Suzuki said people should start looking for help anyway.

“There are low or no cost legal services like Legal Aid,” Suzuki said. “And some attorneys do pro bono (free) cases or can work out payment plans.”

The important thing, said Suzuki and the Bierwerts, is to start looking and asking questions early.

You can start by going to the Special Needs Alliance website at http://www.specialneedsalliance.org/.

And don’t stop there.

“Start asking the questions as soon as they get to high school,” said Sheila, “that’s when you need to start. Because it’s going to take a long time and there’s a lot you don’t know.

“Don’t wait. You can’t wait until they’re 18.”

jmoonjones@yahoo.com

Twitter @Jademoon1

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