James “Dougie” Upchurch lives at Moses Caregiver Home in Valparaiso, which provides private care for Upchurch, who has cerebral palsy. Here, Upchurch poses with Santa and Xander, the son of a caregiver, at a Christmas celebration. Image provided by Liz Moses
INDIANAPOLIS — Valerie DeBusk took over care of her cousin, James “Dougie” Upchurch, after the death of his mother in 2004 when DeBusk was 50 and Upchurch was 61.
Upchurch’s cerebral palsy meant he couldn’t perform many daily tasks and needed constant care — a growing hurdle for DeBusk as she began to age.
“We had no idea what we were getting into,” DeBusk said. “(My husband and I) tried to give him a bath when we first got him, and then we couldn’t get him out of the tub. We had no idea how his body worked.”
For a few years, Upchurch, now 79, spent a couple of hours at a local day program, the Center for Possibilities, which provides lunch and programming for children and adults with developmental disabilities in Hobart.
“It was a wonderful experience. We went to apple orchards, to the South Bend Chocolate Factory,” DeBusk said. “As time went on, I got older and it was harder to pick him up and help him. I tore up my shoulder, and it got to the point where … I just couldn’t manage him physically.”
In contrast, the weeks Upchurch spent at a local nursing home 10 years ago were some of the worst weeks of his life, DeBusk said.
“They would just line him up outside of the nurse’s station in the hall with 8 or 10 other people. When you walked by the nurse’s station, there would be people crying out for help and nobody, nobody, paying attention,” DeBusk said. “Every time I went there and he was in his room, he was wet (in his diaper).”
DeBusk’s reliance on a nursing home isn’t unusual in Indiana, which accounts for 2% of the nation’s population but 3% of its nursing home population.
The state’s high number of nursing homes and low spending on home- and community-based services mean that Hoosiers needing extra care struggle to find options other than long-term care facilities such as nursing homes or assisted living centers.
DeBusk called it divine intervention when she learned about Moses Caregivers Home, a Valparaiso-based group home that offered care 24/7. Entirely private, the home didn’t accept Medicare or Medicaid. But at $5,000 per month in 2012,
it was cheaper than $7,500 monthly for a nursing home, according to DeBusk.
“That place has been miraculous,” he said.
Upchurch’s parents created a fund to provide for his care following their deaths, which disqualified Upchurch for Medicaid.
Places like Moses Caregiver Home aren’t common in Indiana, especially for those who have to rely on government aid to afford services. Neither are the day services offered by the Center for Possibilities.
Indiana spends the second- lowest amount of its federal Medicaid funding on home- and community-based services for long term care, part of long term services and supports (LTSS). In 2019, Indiana spent just 35% of its LTSS funding on home- and community-based services, far below the nationwide average of 59%.
Only one state, Mississippi, spent a smaller percentage (33.4%) of its LTSS funding on non-institution care.
Now, Upchurch would suffer if he were removed from the Moses Caregiver Home, DeBusk said. Staff bring him back souvenirs from their vacations, and Upchurch calls one caregiver’s son, Xander, “Little Dougie.”
“Where else could you find that?” DeBusk asked.
GENERAL ASSEMBLY CONSIDERS PATH FORWARD
By the year 2030, every Hoosier of the baby boomer generation will be 65 years or older, meaning many will retire and many others will begin searching for supportive environments as they age.
Because Indiana, comparatively, doesn’t spend much money on home- and community- based services, Hoosiers have fewer options for aging at home, though an estimated 75% of Hoosiers prefer that over institutionalized care such as a nursing home or assisted living.
Home- and community-based care can include group homes, day centers and home health aides who visit homebound Hoosiers and assist with daily activities such as laundry and cooking.
State legislators heard conflicting testimony this month on solving the issue, with the Indiana Family and Social Services Administration (FSSA) pushing for one model and long-term care industry lobbyists pushing for another.
Ultimately, after several major amendments, Senate Bill 407 would allow FSSA to pursue a managed care model with lawmaker oversight and contract approval.
“It’s not perfect, but at least it’s a step in the right direction to allow FSSA to continue forward with their plans,” House sponsor Rep. Mike Karickhoff, R-Kokomo, said. “This is an opportunity to provide better care for our elderly.”
The legislation, which passed the Senate in a different form, moves before the full House for consideration. Following a Wednesday amendment, the bill includes service support for family caregivers and requires FSSA to study reimbursement rates for home- and community-based providers.
Legislators and long-term care providers expressed doubts about the ability of insurance companies to oversee a statewide system, arguing that it wouldn’t incentivize the needed creation of home- and community-based providers quickly enough.
Allison Taylor, the Indiana director of Medicaid with FSSA, told legislators last week that the implementation was two years away and potential issues could be addressed in that timeframe.
“There is not one provider coordinating that care right now,” Taylor said, describing how the current system fails Hoosiers. “Our plan is really to create a person-centered hub with culturally competent care coordination so that the individuals have the choice and opportunity to age at home.”
Zachary Cattell, the president of the Indiana Health Care Association, represents hundreds of for-profit nursing homes in the state where between 65% and 80% of residents use Medicaid to pay for services.
Cattell emphasized that the industry didn’t oppose reform but had concerns about administrative fees and insurance oversight preventing quality care. Additionally, because Indiana hadn’t adequately invested in home- and community-based services for “30 years,” Cattell said last week the system wouldn’t be able to achieve its goals and shift from long-term care facilities.
“The performance of a management system is only as good as the providers and the options available in the community. Putting this kind of investment into the hands of insurance companies will not create home- and community-based service programs,” Cattell said. “It’s state investment that is required to do that.”
BIRTH OF MOSES CAREGIVER HOME
Liz Moses, the owner of the Moses Caregiver Home, cited a personal aversion to Medicare and Medicaid regulations as a reason for relying solely on
private resident funding. SB 407 wouldn’t impact her business either way but could impact similar homes.
“If someone wants to bring a cake into my house for their loved one — you can’t do that in a place (under Medicare and Medicaid regulations),” Moses said. “There’s all kinds of rules. … If someone wants to come see one of my residents at midnight, they can come see them at midnight.”
The inspiration to create the Caregiver Home came more than 12 years ago after her mother’s experience at a nursing home. She had Lewy Body dementia, an aggressive form of memory loss, and struggled in a nursing home, according to Moses. Her mother died before Moses started the Caregiver Home.
“She was only in that place two weeks, and we realized that she could not stay there any longer,” Moses said. “She wouldn’t eat her meals, and we’d have to go there … and help feed her.”
The Moses Home houses seven people, most living with dementia. With a staff of 11 overseen by her niece, at least two people are with the residents 24/7. A licensed nurse practitioner provides care on-call, and staff are trained to operate and maintain medical devices such as feeding tubes and colostomy bags.
“(People with dementia) live in the past more than they live in anything. … Your present life is what disappears,” Moses said.
Because the Caregiver Home doesn’t accept Medicare or Medicaid, it doesn’t have to follow regulations set by the Indiana Department of Health. Families learn of the Caregiver Home, registered as an LLC, through word-of-mouth rather than searching through federal or state care databases.
“I have people call me who can’t afford me (at $5,500 per month) and I wish I could do it for them,” Moses said. “There’s just a need for this.”
Moses said her passion for senior care came from seeing the lack of dignity afforded seniors in long term care facilities. One new patient at such a facility hadn’t received a shower in 10 months but was bathed in bed, according to Moses.
“It makes me sick what they do to them in some places,” Moses said. “We can really offer, at least to seven seniors at a time, a decent way of life until the end.”
‘THERE’S JUST NO COMPARISON’
Regardless of the bill’s movement, nursing homes will be necessary for a segment of Indiana’s population. Indiana has some of the highest acuity residents in the county, meaning that the Hoosiers in nursing homes have worse health and need more intensive care.
“There is always going to be a need for nursing facilities. That’s the reality,” said Camille Dobson, the deputy executive director of Advancing States, a national membership association for state aging and disabilities agencies.
“It is part of the continuum of care that starts from a healthy person living in their home to when they absolutely cannot live safely or appropriately in their house and need the intensive support that comes from a facility.”
Dobson testified on behalf of FSSA and was contracted by the agency to conduct stakeholder engagement sessions and advise the state’s transition to managed care.
“We have a very, intensely sick population. So finding resources for those individuals in the community is even more challenging because of the types of health care needs of those individuals,” Cattell, with the IHCA, said. “I don’t know anybody that is planning their life that wants to end up in a nursing home… No one wants to lose their abilities as a human being but when that happens, nursing homes are there to help.”
DeBusk, Upchurch’s cousin, maintains that while the Moses Caregivers Home isn’t perfect, it’s the best option out there for people like Upchurch.
“Accidents happen because people are human, but not to the extent that they happen at nursing homes. The neglect they get at nursing homes — there’s just no comparison,” DeBusk said. “There’s no comparison between the nicest nursing home and (Moses Caregiver Home).”
DeBusk noted that even if more options like Moses Caregiver Home existed, not everyone could afford them. Nearly every family needs both parents to work, making caregiving impossible because parents can’t stay home to care for their own children, much less their parents.
“Not very many people have five grand that they can put out, especially people who are raising families and have small children,” DeBusk said. “People are having a hard enough time. I don’t have the answers, but I know that (Moses Caregivers Home) is the way it should work.”
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