A Long Wait for State's Home-Care Help

By Susannah Nesmith

When Betty Black’s father had a stroke in 2012, she felt fortunate that she could take care of him at home, in Jacksonville. She had retired early and could take him to doctor’s appointments. He was also undergoing treatment for prostate cancer.

But as the months wore on, Black, now 63, found her own health declining.

“When you’re treating stroke and cancer and forgetfulness, he was up all day and all night, so I was up all day and night,” she said. “I needed respite care.”

Black’s father was put on a waiting list for services offered by the state. While they waited for respite care to spell Black so she could get more rest, her siblings pitched in to help, but it wasn’t enough. Several months after her father moved in with her, Black was hospitalized.

“My sister quit her job to take care of him,” she said.

Multiple studies have shown that caregivers are prone to physical and mental health problems related to the stress of tending to elderly or disabled loved ones.

The state offers services like respite care to assist caregivers, whose efforts help keep people out of more expensive nursing home settings. But as of August, Florida had nearly 59,000 people on a waiting list for home- and community-based services such as respite care and Meals on Wheels.

During the past two years, Florida boosted funding for the programs, but the need still far outstrips the resources available. The Alzheimer’s Disease Initiative (ADI), for example, received an additional $3.2 million, increasing its budget to $22.1 million for all services in the current year.

The program provided respite care for 1,546 people this summer. But another 4,305 were on the waiting list. In April 2015, before the funding increases, there were 2,947 people on the ADI waiting list for respite care.

“AARP is grateful to the legislature for every extra dollar put into home- and community-based services in recent years,” said Jack McRay, advocacy manager for AARP Florida.

“But the waiting list for services is still growing, and tens of thousands of families still wait for care. AARP is asking voters to press candidates for the legislature to commit to minimizing the waiting list for these important services.”

All 120 seats in the state House and all 40 Senate seats are on the ballot Nov. 8.

Alzheimer’s list
The Department of Elder Affairs estimates it would need another $49 million to serve everyone on the current ADI waiting list. And the ADI is one of the smaller programs that the state funds.

The Community Care for the Elderly program, which offers home nursing, adult day care and shopping assistance, has seen its waiting list grow from 29,000 in 2014 to 36,000 this summer. Receiving a funding increase of nearly $4 million over the past two years allowed the program to serve an additional 624 people. Nursing home care is much more expensive.

The program has a budget of nearly $53 million, but the department estimates it would need at least four times that much to serve everyone on the waiting list.

Meanwhile, many in need of services are dying while on the list—6,538 in the past year. The average age of those on the waiting list is 80, according to Ashley Chambers, spokeswoman for the Department of Elder Affairs.

Betty Black’s father was 86 when he died, about a month after he moved into her sister’s home. As Black was planning the funeral services for her father, she received a call that he had gotten off the list and could receive the services he needed.

Susannah Nesmith is a writer living in Miami.