Facing the cost and challenges of caregiving in Florida
COVID-19 has highlighted how older Americans are cared for, the special vulnerabilities they face and the challenges families have to confront when making caregiving decisions.
Marcia Dattoli's mom was 95 when she got into a car crash. She was driving and no one was injured, but she decided it was time for her to move into an independent living facility.
"She's a warrior, a tough cookie," Dattoli said.
Even before her mom moved into a facility, Dattoli had been researching caregiving options, so she was ready when her mom was ready.
"I had everything ready and moved her in to a wonderful place in Aventura. She said to me, 'I know I was ready to move, but I didn't think you'd do it so fast.' That was the beginning of the journey of caregiving for my mom," Dattoli said.
Aging is changing. Demand for caregiving services continues increasing. The fastest growing age group in Florida is people 65 to 74 years old. The number of Floridians 65 and older is about the same as the entire population of Kentucky.
"The cost of care is really at the base of every decision to be made," said Amy O'Rourke, author of "The Fragile Years: Proven Strategies for the Care of Aging Loved Ones." "You can want to stay at home with 24-hour care, but if you don't have the money to pay for it, your decision is really going to be made for you. So it's imperative that costs get discussed, acknowledging that money is hard for people to talk about."
The average cost of a private room in a long-term care facility in Florida is more than $8,000 a month. It is about half that for an assisted living facility, according to the Genworth Cost of Care Survey. Prices are slightly higher in South Florida.
"Although it's the most important thing in my mind, you have to be able to afford what you want. It's often the most delicate and the most sensitive topic to be talked about," O'Rourke said.
Dana Pensak is just beginning her journey of caregiving. Her 83-year-old father is a retired Air Force colonel.
"He's extremely independent, has always been the authority figure in his life — always in control. So this next step is obviously very difficult for him," she said.
Pensak lives near her father while her sister is in Los Angeles.
"It's a lot on me and a lot on me to tread lightly, to be compassionate yet respectful about his feelings, which has been tricky. But we're getting there," she said.
Starting the conversation about caregiving can be difficult. O'Rourke's advice is to begin having it as soon as an aging loved one mentions anything about getting older. Launching into the topic after something has happened, like a fall or illness, makes it more challenging to seek out and assess options.
"I prefer having children talk to their parents when it's removed one step from their physical well-being because it's just easier and less threatening," she said.
Florida likely will continue getting older because a quarter of the state’s population will turn 65 by the next presidential election, giving caregiving policies an increasingly political dimension.
When President Joe Biden was still a candidate, he announced a plan to spend $450 billion to expand caregiving for seniors and disabled people.
"The last few months has only underscored how vital it is for families and older Americans to have more home care and community care choices that fit their real needs," said Biden in July 2020. "We're trapped in a caregiving crisis within an economic crisis, within a health care crisis."
This spring, Biden released an infrastructure plan that included $400 billion for these caregiving services. But by this summer, that effort had been dropped as the White House has been negotiating with congressional Republicans and Democrats. The Biden administration has continued pursuing the plan.
Larry Polivka, former executive director of the Claude Pepper Center, calls that "unfortunate" He said spending that money on long-term care would make a "material difference in states like Florida."
One key area of demand is on home- and community-based services. According to recent testimony to the state House Health Care Appropriations Subcommittee, 150,000 Floridians live in long-term care facilities and another 900,000 rely on community care services.
The state-federal government health program Medicaid is responsible for paying for more than half of long-term care residents in Florida, according to the Florida Health Care Association.
"We have a large amount of unmet need. One of the major manifestations of the failure of long-term care is the failure to achieve at the level it should in Florida," said Polivka.
The state has received nearly $107 million in federal American Rescue Plan money which it has pledged to use to address the waitlist for long-term care facilities. During last month's House subcommittee hearing, Florida's Department of Elder Affairs Secretary Richard Prudom told lawmakers that nearly half of that will go toward nutrition services.
"I think the state decision to go with nutrition under the circumstances is is highly defensible. The main issue with this is that money's not recurring," said Polivka.
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