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Families fight to maintain care for loved ones with developmental disabilities

Funding increase will bring nearly 2,000 people off a 20,000 person waitlist
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Posted at 1:01 PM, Aug 16, 2021
and last updated 2021-08-16 18:31:54-04

TAMPA, Fla. — Despite a recent increase in funding, many people with developmental disabilities, who already receive money from the state, are fighting for benefits.

Earlier this year, the Florida Legislature made a historic $95 million investment in what's known as the "iBudget" Florida Medicaid waiver, a program that lets individuals receive care in their own homes and community, rather than an institution.

The move is projected to allow nearly 2,000 people to come off the state’s years-long, 20,000-person waitlist. But advocates tell the ABC Action News I-Team they worry others who already receive these benefits could be at risk.

A MOTHER'S FIGHT

Jonathan Hughes was born prematurely, and as a result, he has severe cerebral palsy.

The bond between Hughes and his supported living coach, Ernest Bennerman, is one built through trust, comfort, and an understanding that comes with being in each other’s lives for the last 17 years.

“I didn’t realize it was 17 years. I knew it was a few years, but not 17 years. But you know, that’s because — you’ve got to enjoy this. You’ve got to enjoy what you do and I enjoy what I do.” Bennerman said, looking at Hughes. “I just love this guy, you know he just brings a lot of excitement, definitely to my life.”

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Ernest Bennerman, Jonathan's supported living coach

Bennerman is also Hughes’ Social Security representative payee and healthcare surrogate.

“I’m like a brother to him. And he’s like a brother to me and we’re family,” Bennerman said.

Carol Novak, Hughes' mother, said her 45-year-old son is aging with his disability while she, at age 73, is “aging out of caregiving."

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Jonathan Hughes has cerebral palsy and is on the iBudget Florida Medicaid waiver

"And the worst nightmare all us parents have is, what’s going to happen to our son or daughter when we’re gone," Novak said.

Novak has spent her waking hours over the last several decades, putting together a 24/7 team to help care for her only child. But now, after 10 years with consistent care, an adjustment to the funding for Hughes’ care threatens to change that.

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Carol Novak, Jonathan Hughes' mother

“He’s had the exact same support plan for 10 years. Approved by APD and funded by APD,” Novak said of the Agency for Persons with Disabilities. “It makes absolutely no sense. Because Jonathan has not improved, he does not have a decreased need, he has an increased need for support services.”

The state agency says funding for the iBudget Florida Medicaid waiver, which allows more than 35,000 Floridians like Hughes to receive care in their homes and be a part of their communities, is based on the level of need and typically changes over time.

Every three years, there is a “thorough review” for any changes to a customer’s funding.

“The services that Jonathan has had approved for 10 years, he still needs them,” Novak said.

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Jonathan Hughes has cerebral palsy and is on the iBudget Florida Medicaid waiver

Instead, according to the Final Order from Hughes’ appeal hearing, the state said some of what Bennerman handles as a supported living coach can be handled by what’s called “personal supports” — caregivers who do not have the same level of training or pay.

In the appeal, Novak argued her son’s “health and safety cannot be maintained using cheaper labor.”

The appeal was denied.

Novak has since hired an attorney, cutting into savings meant for her son, to appeal the decision in court.

In the last year, nearly a thousand people have requested a hearing to appeal the state agency’s decisions on their cases. More than 250 cases remain open.

When asked what is fueling her fight for her son, Novak answered: “Fear.”

“He understands everything that’s going on. And he’s totally aware of his vulnerability," Novak said.

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HIGH TURNOVER

A pay cut to Bennerman’s services through the iBudget waiver would put his job in jeopardy.

“That’s terrifying,” Bennerman told the I-Team when asked about a proposed change to the funding amount for Hughes’ care. “With the team coming together, that takes time.”

The pay is low. The job is demanding.

“We have to pay for our own medical insurance and all that stuff. People [are] not knocking on the door to do this job, that’s not happening,” Bennerman said. “People can go anywhere and get the same amount of money or even more than what we’re getting here. So it has to be a heart issue.”

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Ernest Bennerman, Jonathan's supported living coach

There is a 51% turnover in direct support providers — people like Bennerman — up 11% since before the pandemic, according to the Florida Developmental Disabilities Council.

The high turnover in the field raises concerns about meeting the needs of not only current customers but the thousands more set to come off of the iBudget waitlist through the recently approved increase in funding.

“It’s a crisis,” attorney Nancy Wright told the I-Team.

Wright has been advocating for disabled adults for more than a decade. Over the last year, she said there has been pressure from the state legislature for the state agency to reduce spending.

PUSH TO LOWER-PAYING SERVICES

The attorney told the I-Team she’s recently received a lot of calls from people telling her their services are being cut.

“The other thing that I’m seeing a lot of is this segue to try to push people to use this lower-paying service for people who need a high level of personal care. I’m also seeing a lot of denials for eligibility that surprise me. That doesn’t seem to make a lot of sense. And people are having to appeal to those. I’m seeing denials for crisis enrollment, that’s the highest priority to get you off the waiting list,” Wright said. “A lot of these denials or reductions are being done with no change in the person’s condition, in fact, they may even be a little worse than they were before.”

In an email, the Agency for Persons with Disabilities Communications Director Melanie Mowry Etters told the I-Team, “APD is committed to meeting the medically necessary services of its customers within state and federal Medicaid requirements. Each person enrolled in the iBudget Florida waiver has a Waiver Support Coordinator who assists the client in accessing services within their cost plans and in their local community.”

“There’s got to be a better understanding of the amount of money that it takes to handle this population. Florida is consistently in the bottom in the nation,” Wright said.

"IT SHOULDN'T BE THIS HARD"

One of Wright’s clients, Robyn Clarke, is going into her senior year at the University of Florida.

“I’m a journalism major on the sports media track and this is — I’m living my dream,” Clarke said. “I’ve been a Florida fan since I was a little girl and so I knew from the time that I was 6 years old that I wanted to come to UF.”

Clarke, like Hughes, has cerebral palsy and receives 24/7 care to help her get up in the morning in her residence hall, go to the bathroom, and get to class.

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Robyn Clarke, a University of Florida student with cerebral palsy, is on the iBudget Florida Medicaid waiver

“Without them, I wouldn’t be able to be here,” Clarke said of her personal supports, funded through the iBudget waiver. “Living with cerebral palsy is not easy. There are some days where I shut the door and I come in here and I just cry because I’m so frustrated. But the thing that keeps me going is knowing that I can then use those struggles to help other people and just be a voice.”

Clarke said it’s crucial for people to realize a person’s disability and needs are not one size fits all.

The care she received changed when she turned 21, cutting the hours for hands-on help in half, replacing it with 12 hours of a social companion.

“The hours that they were going to provide wasn’t going to meet the care needs that I had,” Clarke said. “It’s 2021. It shouldn’t be this hard to get the help that we need to go about everyday life.”

She is currently waiting on a hearing for her appeal.

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Florida has submitted a proposal to the federal government, asking for an additional $191 million over the next two years as part of the American Rescue Plan Act stimulus package, to bring more developmentally disabled Floridians off of the iBudget waitlist.

Below is a statement from Agency for Persons with Disabilities Communications Director Melanie Mowry Etters:

“In Florida, more than 35,000 people with developmental disabilities are living and participating in their local communities because of the services provided through the Agency for Persons with Disabilities (APD). The agency is currently enrolling 1,900 new individuals this fiscal year onto the iBudget Florida waiver due to $95 million allocated by the Governor and Legislature.

APD is committed to meeting the medically necessary services of its customers within state and federal Medicaid requirements. Each person enrolled in the iBudget Florida waiver has a Waiver Support Coordinator who assists the client in accessing services within their cost plans and in their local community. An assessment of customer needs occurs every three years because an individual’s situation typically changes over time. When a person’s situation changes, cost plan adjustments are required. Fair hearings are held when a customer disagrees with the needed cost plan changes.”

This story started with a tip. If you have a story you’d like the I-Team to investigate, email Kylie at kylie.mcgivern@wfts.com.