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Caught Between Two Longterm Health Systems, One Woman Tells Her Story

Tallahassee businesswoman Rita Stevens runs a bustling childcare center. In addition to caring for other people’s children, Stevens is the primary caregiver for her adult daughter who has a mental disability. Her daughter is able to live in her own apartment with assistance but Stevens says there’s still a lot to do.

“I feel like I have to babysit the caregivers and stay on top of them to make sure her room is getting cleaned. They have these supportive living plans and making sure they’re following those," she said.

At one point, her daughter was placed on antibiotics which the in-home assistant wasn’t administering. Stevens also cares for her 86-year-old mother, who has dementia. Her mother used to live with her, but the dementia became too much- and she had to place her mother in a nursing home.

“I had her 24/7. She was up all night, we didn’t sleep. To bring her up here [to the childcare center] and her just wander, I couldn’t have that, but yet I own a business.”

Stevens is caught between two different systems of long-term care. One for those like her mom, the other for people with disabilities.

On Dealing With State Support Services for the Disabled

Momma is constantly soaking wet, down to her clothes. And it wasn’t that way until she got confined to a wheelchair. And once we got that confinement, it’s a constant thing. Especially the weekends.

Stevens’ disabled daughter relies on the state Agency for Persons with Disabilities, called APD, and Medicaid for services—such as an in-home assistant. Steven’s daughter is one of the lucky ones. The agency has a waiting list of more than 22,000 people. By July it will finish putting a new budget system in place that changes funding amounts based on individual needs.

“A family who has an individual who needs full time care, around the clock nursing...their amount would be greater than a family with a person who can feed themselves, use the restroom themselves, able to dress themselves," said APD spokeswoman Melanie Mowry Etters.

The system also gives more flexibility to families on how they spend the money. For example, a family can spend more on behavior therapy and less on life skills training if they need to.  

But the system has gotten pushback from families. For some it’s resulted in a decrease in funding. Stevens says, while she hasn’t appealed her daughter’s allocation, she worries about the care her daughter is getting:

“I have struggled to get the services she has now. There were days when she had nothing to do, she couldn’t go to a day program, she had to just sit at the house, and I was not okay with that.” 

Nursing Homes and Medicaid Managed Care

While Stevens’ concerns may be similar for her daughter and mom, her mother’s situation is completely different . And Stevens worries about the care her mother is getting in the nursing home:

"Momma is constantly soaking wet, down to her clothes," Stevens said. "It wasn't that way until she got confined to a wheelchair. Once we got that confinement, it was a constant thing, especially the weekends."

Right now, Steven’s mother pays on her own to be in a nursing home. But once she runs out of money, the state will use the Medicaid program to pay for the nursing home costs. Under Medicaid, the state pays directly to the nursing homes. But in a new managed care system going into place, the state will give a set fee per patient to private insurers. Those insurers will contract with nursing homes. It’s unclear whether the new Medicaid Managed Care system will affect the situation for people in nursing homes.

Stevens fears the situation will only get worse.

“I think it’s a staffing thing because whenever I go it’s like there’s no one down the hallway. Where is the staff? What if Momma were to fall, what if Momma needed something? There’s no one down here.”   

“The residents we’re seeing in our facilities are much more medically complex, they have higher 24 hour needs, they need more nursing," said Kristen Knapp, spokeswoman for the Florida Healthcare Association, which represents nursing homes.

"We’re seeing nursing facilities providing more staff. Residents are getting more time." She said.

Knapp says nursing homes support the staffing standards laid out by the legislature—as long as they’re funded.

“Nursing homes, since 2008 have had funding reduced by $700 thousand dollars. So, 70 percent of a facilities cost goes to pay or people...We’ve always supported appropriate staffing standards, but we need the legislature to fund it.”   

That means a lot of the caregiving not done in the nursing home falls to family members like Rita Stevens.

Follow @HatterLynn

Lynn Hatter is a Florida A&M University graduate with a bachelor’s degree in journalism. Lynn has served as reporter/producer for WFSU since 2007 with education and health care issues as her key coverage areas.  She is an award-winning member of the Capital Press Corps and has participated in the NPR Kaiser Health News Reporting Partnership and NPR Education Initiative. 

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