Lisa Fisher had almost despaired of finding a way to keep her mother who has Alzheimer’s out of a nursing home. Place after depressing place that she visited reduced Fisher to tears.
Then she found Joy’s House, which provides daytime care for adults, many of them seniors who have physical and mental challenges. Each morning Fisher drops her 83-year-old mother, Charlene, off at Joy's House, and each night she picks her up and brings her back to the home she shares with her husband, Fisher's father.
But the Fisher family may soon need to explore other alternatives. Joy’s House, which opened 20 years ago in Broad Ripple, has run into financial difficulties and may be forced to close its doors.
The predicament reflects the challenges families face as they try to help their elderly relatives "age in place," or in other words stay in their homes as they grow old. Doing so tends to be far less costly than moving to a nursing home, particularly for seniors who need just a moderate level of help.
But nursing home care remains the big ticket in adult services. Less intensive services like adult day centers can wind up struggling to stay afloat.
For Joy's House, fewer donations, Medicare rules, potential changes in Medicaid reimbursement, and Indiana's woeful track record caring for seniors based on one reputable assessment all compound the problem, said Tina McIntosh, Joy’s House founder.
'Indiana is not doing well'
An AARP scorecard ranks Indiana as the worst in the country when it comes to providing long-term services and support for older adults, people with disabilities and their caregivers. Most of the Medicaid dollars in the state go to supporting nursing home care, said Sarah Waddle, state director of AARP Indiana.
“Indiana is not doing well as it relates to making sure that there are different options for people as they age,” she said. “We’re very out of balance. … There is a time and place for nursing home care, and that is needed. But let’s not jump to that option before we need to.”
State officials would like to shift that imbalance slightly. They are applying for federal approval to increase the reimbursement rate for adult day services for Medicaid recipients with more acute needs, something many other states do.
However, that change also would bring a decrease in the amount the state pays for adults who need a lower level of service.
Under the system, which will go into place in February 2020 if the government approves it, the state will increase its spending on adult day services by 6.2% a year, said Jesse Wyatt, deputy director of aging for the Family and Social Services Administration. Providers now receive a set amount of reimbursement per person regardless of whether they provide level three care, the most intensive level of services, or level one care, the lowest level.
“We wanted to correct that so we are incentivizing providers to make sure they are taking individuals with higher needs,” Wyatt said. “Today there’s a disincentive for adult day providers to take any one but level one.”
If this change were to go through, however, it would only add to the financial challenges for Joy's House.The adult day center accepts only those who qualify for the lowest of the three levels of service.
And while the center could opt to accept people with a higher level of need, that would require it to hire a nurse, which would cost more, McIntosh said.
“What is unfortunate is that it feels like a penalty for serving individuals who are not yet in need of acute care,” she said.
Keeping families together
More than two decades ago while she was in college, McIntosh worked at a local adult day center. There she met a beautiful woman in her 90s with bright red lipstick painted on casually, almost like a child had applied it. The woman lived in her own world until she sat down at a piano, and it was then her younger self came rushing back, McIntosh recalls.
A few years later at age 27, McIntosh decided to open her own center in Broad Ripple, a neighborhood known more for its younger inhabitants than its older ones. She wanted a center that looked like a house and not like, well, a center.
She designed the facility so clients would feel like a guest in someone’s home with activities that would stimulate them, like music and crafts.
Originally, some people suggested naming the center after one McIntosh's grandmothers: Ethel or Edna, McIntosh said. The group wound up choosing Joy's House because of the emotion the name evokes.
Ten years ago, the facility expanded, allowing it to increase the number of guests each day from 23 adults to as many as 42 guests. A few years later, Joy’s House took over an adult day center on the south side, which serves about a dozen people a day and acts as a learning lab for University of Indianapolis students.
While the centers serve some younger adults, more than 70 percent of their guests have some form of dementia, McIntosh said. Others have mild developmental disabilities or require care because of conditions such as a stroke, multiple sclerosis or Parkinson’s. Most spend nights with a family caregiver, such as a spouse or adult child.
“Most of us as we age, our goal is to live at home with people whom we love the most,” she said. “We keep families together in their homes.”
But it comes at a price. The daily rate for care from 7 a.m. to 6 p.m. in Broad Ripple is $75 a day, $70 at the south-side location.
Nursing home care is costlier. On average, nursing home care in the United States costs $225 a day compared with $68 a day in an adult day center, according to the U.S. Department of Health and Human Services.
Joy’s House thrived for years. About a decade ago, when the center expanded, it was able to buy the building. The facility, which has a staff of about 20 people, offers scholarships for those who do not qualify for the Medicaid waiver and do not have the means to pay.
One of the challenges that Joy’s House and other adult day centers face is that unlike health care, Medicare does not cover the services they provide, said Kathy Pellman, director of Still Waters Adult Day Center, which has two Indianapolis locations, which emulate the Joy’s House model. Long-term care insurance may reimburse for it, but many people lack that benefit.
Studies suggest that most of those who use adult day services cover the costs through Medicaid. While the changes that Indiana wants to make to Medicaid reimbursements could help some adult day centers, Pellman said, having the federal Medicare program cover the service would make even more of a difference.
If that were to happen, adult day centers could expand the social services they offer to include some health-related services, such as overseeing medication and monitoring clients’ vital signs and diets.
“The biggest thing our industry nationally is looking at is making adult day services a Medicare benefit,” Pellman said. “I think that’s the future of our industry because they’re going to realize we’re part of the health care spectrum anyway.”
A warm and comforting home
For Charlene Fisher and her family, Joy’s House has been nothing short of a godsend. The center stood out from all the other options Lisa Fisher saw when she sought to find a place for her mother.
“The very first thing that struck me was it looked like a home,” Fisher said. “It wasn’t industrial at all. … It’s very warm and comforting.”
Charlene has seemed happier since she started going to Joy's House, Fisher says. She's more interactive and follows conversations better.
Every morning, Lisa Fisher drops her mother between 8 and 8:30. Every evening she picks her up around 5. During the day, "Miss Charlene," as she is known, enjoys singing, listening to music and doing crafts.
Not only has the center improved Charlene's days for her, it also has meant that she now sleeps through the night instead of wandering around.
If the center were to close, Lisa Fisher said, her mother would most likely have to move to a nursing home.
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Joy's House helps Charlene stay at home. It could close and send her into a nursing home.