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'I go in the bathroom and cry. It's hard' | Mom explains why Georgia needs more funding to help adults with disabilities

Georgia's Senate must decide whether to fund more waiver services and pay increases for those who work frontline jobs helping adults with developmental disabilities.

ATLANTA — It’s hard to carry a conversation with Gabe around. You can ignore movement and mumbling, but Gabe demands attention, doing whatever it takes to get it.

As 11Alive Investigator Rebecca Lindstrom tried to talk with Erin Wentz, Gabe's mom, he kept walking around the house to find toys and household objects to hand them. 

Their hands were full juggling the items, but if they didn’t keep taking them, Gabe would get closer and more insistent. If he did stop moving, it was generally to block their view of one another.

"What you see is him walking and talking,” she told Lindstrom. “What you don’t see is him getting naked and kicking holes in the walls. And running outdoors and screaming the aliens getting him," explained Wentz.

Gabe was diagnosed with autism as a toddler. Wentz says the family had a routine to support his developmental disability. But they weren’t prepared, when five years ago, a doctor diagnosed him with schizoaffective disorder.

“It’s like he woke up and he was gone,” Wentz recalled.

Gabe no longer has boundaries. It’s one thing to keep handing someone stuffed animals and cars, but he has also become fixated on things like the stove. Wentz says it’s hard to get people to understand.

“They’re like, 'it can’t be that bad.' It can. It really can,” she said. “It’s like his impulse control is gone. I stopped at the gas station, he got out of the car and ran.”

Georgia has what’s called a service waiver to help families afford care for people like Gabe.

“It will pay for the day program. It will pay for the nurses to come take care of him," Wentz explained. "It should pay for behavioral health in the house. Apparently, it will pay to help fence our house because he’s a runner."

Those are all services the family can’t afford on their own. The increased demands of taking care of Gabe have already forced Wentz to quit her job. Her husband lost his job a few months ago after taking family medical leave to help.

He has since found new employment, but keeping up with Gabe’s medications, efforts to find him treatment, and the damage he does to the house when he gets frustrated, have left them struggling to make ends meet.

They still hope to get waiver services, but until then, they’ve created an online fundraiser to help them get by. You can learn more by clicking here.

“How many of us could live like that?” asked D’Arcy Robb, executive director of Georgia Council on Developmental Disabilities. “Parents do everything they can for their children. None of us are superhuman. All of us have a breaking point. And I think when people understand the level of intensity that is required that’s a key point.”

Robb says there are about 7,000 people on the waitlist for those waiver services. Some have waited more than a decade – making it to the top of the list is tough.

“A question they’ve been asked is, ‘is that person currently homeless?’ So I think that gives you a sense of how bad things need to be before a person gets a waiver,” explained Robb.

RELATED: Advocates call for Georgia lawmakers to address Medicaid waiver waitlist for people with Down syndrome

This legislative session lawmakers are again debating whether to raise that cap. Gov. Brian Kemp put funding in his budget to provide services to another 250 families. Lawmakers in the Georgia House did increase the funding to support 375 new waivers, but that's still only five percent of the people waiting for assistance.

A legislative study committee that shared its findings before the legislative session recommended the state fund significantly more: 2,400 new waivers.

The budget is in the hands of the Senate now and advocates are hopeful lawmakers can at least find a number somewhere in the middle. Even if 2,400 waivers were to be fully funded, it would only help about a third of the families on the waitlist, families like Gabe’s.

But the number of waivers is only the first battle. More waivers won’t do much if there are no workers to do the job. Right now the pay for direct support professionals is on average $10.63 an hour. According to the job site Indeed, a person can make more with an entry-level job at a grocery store, fast food chain or movie theater.

Direct support professionals help people with disabilities get out of their homes and into the community. It could involve teaching new life skills, job training, or helping with activities of daily living.

“The people who desperately want to do this work, they’re coming back and saying, ‘look I love this work but it’s just not enough to sustain my life.’ Literally, they can’t pay their bills,” said Robb.

A study on wages in Georgia led the state to recommend boosting pay for direct service providers by more than 40 percent. But a bump to $15.18 an hour would cost state taxpayers more than $90 million a year.

“When we don’t invest in this population we get crisis and chaos,” said Robb.

RELATED: Georgia mom angry after state forces her to trade custody of her son for his mental health treatment

Wentz remembers the last time she tried to get help. She went to the emergency room.

“I asked them what would happen if I signed over my rights to the state and they said they’d get me for abandonment. I’d go to jail,” she said.

Now she pushes back to those in authority, asking who is responsible when her son gets turned away.

“How is it not criminal for him to be not treated?” she asked.

The ER knew it didn’t have what Gabe needed. So Wentz says it did try to find him mental health care.

“They said we’ve literally tried every single place that we know of in the state of Georgia, Florida, surrounding states. We can’t find (it) anywhere,” said Wentz.

And a big reason for that is Gabe can’t do things like bathe himself or cut his food. It goes back to having enough staff.

Wentz says the lack of support has left her family trapped and financially drained -- and Gabe still is not getting what he needs.

“One day last week he cried all day. Like all day, uncontrollable," she said.

That’s when Wentz cries too.

“I cry a lot. I try not to do it in front of my kids," she said. "I go in the bathroom and cry. It’s hard.”

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