Thousands of disabled Hoosiers need home health aides; there aren’t many

Becky Sinkovic just needs a little help at home.

Sinkovic, born with dwarfism, has an average torso but shortened limbs along with several spinal conditions, including: scoliosis, severe spinal stenosis, kyphosis and lordosis.

She could live independently until 2015, when doctors urged her to get a series of back surgeries that fused her spine to prevent permanent paralysis and required intensive physical and occupational rehabilitation at a local nursing home.

Desperate to come home, her mother — a retired registered nurse and certified case manager for Indiana University Health — signed her up for Medicaid to supplement Sinkovic's Medicare disability coverage. Medicaid would cover at-home health aides for Sinkovic, easing the burden on her mother, who was undergoing treatment for the ovarian cancer that would eventually claim her life.

"She was trying to take care of me and trying to take care of herself at the same time," Sinkovic said. "So when I came home (from the nursing facility), my best friend broke her lease to move in with me and my mom and she took care of both of us when she could but she also had a full-time job."

During the friend's working hours, Sinkovic and her mother paid for someone out of pocket at $21 per hour, usually for three to four hours each day until her Medicaid benefits started.

Just months after Sinkovic came home, her mother died. Beyond losing her only living parent — Sinkovic's dad died when she was an infant — she also lost her greatest caretaker.

"My mom was a huge advocate for me; she talked for me a lot when it came to medical stuff — not in a bad way, she just knew better than I did. Like how to navigate this (benefits system),"Sinkovic said.

But sometimes, after her mother's death, no one could come from the home health agency. And Sinkovic, still bedbound at the time, remembers laying at home and urinating on herself with nothing to do but sit in it and wait.

"I can do stuff now; I can manage. But back then it was really hard and I couldn't imagine for other people who are paralyzed or bedbound and being… left alone," Sinkovic said. "It scares me for my future and when I get older."

The state of home health in Indiana

Sinkovic, 33, is one of thousands of disabled Hoosiers who need home health aides. And with hundreds of thousands of Baby Boomers expected to hit retirement age in 2030, at which point more and more will start needing the same intensive care, Indiana doesn't have the infrastructure to handle it.

In 2019, Indiana spent 35% of its Medicaid long-term services and supports funding on home- and community-based services — which would cover home health aides — far below the nationwide average of 59% and the second-lowest in the nation.

According to the Alzheimer's Association 2022 report, Indiana had an estimated 43,460 home health and personal care aides in 2018, also known as the direct care workforce. By 2028, Indiana will need 59,990, a 37.5% increase.

During the COVID-19 pandemic, elderly Hoosiers looking to avoid nursing homes, which were uniquely vulnerable to the virus, realized they had few options to age at home due to the shortage of providers and employees. Additionally, advocates found that COVID-19 complications, or COVID-19 longhaulers, have increased the number of younger populations in need of home assistance.

"When the pandemic came, it really brought into focus the need to really reform the system," said Dr. Dan Rusyniak, the director of the Family and Social Services Administration. "If we (don't) have a workforce that (is) in the communities, then as this population of Medicaid recipients ages, it's going to be difficult to keep people at home if we're not able to provide services."

Recognizing this, the Family and Social Services Administration is urging the General Assembly to pay for a fundamental shift in how the state delivers services. Currently, Indiana operates under a fee-for-service model, which means states pay providers for each covered service. Starting in 2024, the agency would like to pivot into a managed care model, which they say would save the state money in the long term.

Under managed care, the state pays an insurance company to oversee the care of an individual — which Indiana already uses for government insurance programs like the Healthy Indiana Plan or Hoosier Healthwise. Opponents say the cost savings will be the result of fewer services approved for clients.

Stakeholders have known this change is coming but struggled to overcome the embedded challenges. Indiana has long relied on and invested in institutional care, such as nursing homes, even though the vast majority of Hoosiers prefer care at home.

Low wages, benefits stifle workforce

A 2017 brief from The Arc of Indiana, which advocates for Hoosiers with intellectual and developmental disabilities, analyzed Indiana's direct service workforce and reported that low wages in the industry prompted turnover as high as 45%. The average worker was 38 but had just three years of experience in the field.

"No one is satisfied with the current situation of multiple and frequent(ly) changing caregivers and compromised quality of care resulting from the inconsistency of the current (direct service provider) workforce," the brief said.

Sinkovic has regained some mobility, even getting a bariatric surgery early in the pandemic to increase her range of motion. She primarily uses her motorized wheelchair to get around but has started using a walker for short periods.

But she still needs home health aides, especially for showers and other personal care. Her fused spine means she can't touch her own toes or sweep the floors of her two-bedroom, two-bathroom apartment. Because of that, her home health aides are supposed to help her with some light housekeeping — dishes, laundry or sweeping — but some aides reprimanded her for asking for help.

"One time I got sternly told by an aide, 'I'm not here to be your maid,' when I asked her to do the dishes," Sinkovic said. "(They're) not supposed to do that… I could do it myself but you can (do it) much easier and faster."

To do the dishes, Sinkovic would have to park sideways in the kitchen but would still have limited access to the sink due to her shortened limbs and fused spine — which means she can't rotate her torso. Something on a top shelf would be out of reach for her.

Her benefits means she qualifies for aides three times a day, scheduled around her shifts as a part-time phlebotomist. Beyond the occasional rude or condescending aide, some have stolen from her — credit and debit cards, even a glass top coffee table.

She's had aides she's loved but the high turnover, combined with frequently changing providers, means she doesn't see the same person for long.

State involvement

In a case like Sinkovic's, Rusyniak said the state's ombudsman system investigates and responds to reports of abuse or neglect by state healthcare providers. But to improve the system, Rusyniak pointed to the state's Direct Service Workforce Advisory Board and Direct Service Workforce Plan, which calls for investments to curate a workforce that is "well-trained, reliable and stable."

In particular, the $130 million in Workforce Investment Grants, launched in November, are rewarded to providers to combat the industry's low wages, which fall below the state's living wage, and inadequate benefits. At least 95% of the funding must go directly to workers. Going forward, FSSA will review its rate setting.

But Rusyniak noted that training for providers varied greatly from agency to agency and needed to be more comparable.

"If you're a direct service worker, training… It's provider specific, meaning that you go and you get hired by a specific provider and they provide the training," Rusyniak said. "So one of the strategies that we're looking at is how do we develop a more portable training and certification for individuals who are direct service workers so that everyone would get the same type of training."

Advanced training would allow these workers to specialize in caregiving types, such as dementia care or intellectual disabilities.

FSSA believes managed care would help Hoosiers navigate resources

Sinkovic's apartment isn't designed for someone living in a wheelchair with limited mobility. Her kitchen and hallways are so narrow she can't turn around and years of living in such tight spaces has scuffed the walls. She'd love to live somewhere else but this particular unit was the only one she could find with a walk-in shower — a necessity for her.

"I'm paying a ridiculous amount to live here just so I can have a walk-in shower," she said.

Sinkovic said she didn't know if the state had programs for someone like her seeking accessible housing. When asked, three separate press secretaries shared a half dozen programs across several government entities — a confusing process for anyone but especially someone who is short on time and needs immediate help.

Rusyniak urged Hoosiers to contact 211, which pivoted during the pandemic to respond to over 1.3 million calls about COVID-19 immunizations and testing resources. But the resource is designed to do much more, including housing or utility assistance.

But Rusyniak said that was another reason why pivoting to managed care would help elderly or disabled Hoosiers. Under that system, someone like Sinkovic would be matched with one person responsible for navigating the myriad of systems for her — similar to how her mom helped Sinkovic before she died.

"Healthcare in general — and it's not specific to Indiana, it's across the board — is complicated. And then when you blend in not just healthcare and health-related services but social services, etc. it gets even more complicated," Rusyniak said. "But (the resources are) all kind of disconnected."

An uncertain future for Sinkovic

Changes to increase the workforce — and the overall home- and community-based services — would benefit the thousands of Hoosiers like Sinkovic, who thought she wouldn't need in-home assistance until she was much older.

"I'm still young; I don't like relying on other people… I don't want to inconvenience others," Sinkovic said. "I just want to be independent again… I want to date and have a relationship. I feel like relying on other people to help me interferes with that and it's an embarrassment."

Sinkovic does have two brothers living out of state but doesn't want to leave the state where she grew up, has a robust community of friends, volunteers at a local community theater and has a network of fans who purchase her intricately decorated cookies and cakes. But other states do a better job at providing the services she needs.

As Sinkovic's spinal condition worsens, she risks needing an additional surgery to fuse her neck — which would end her ability to drive in her specially adapted van. But without the surgery, she could lose sensation in her hands, jeopardizing both her career as a phlebotomist and a baker.

Sinkovic wonders how she can plan out her life, including marriage and children, around those surgeries when help is already so uncertain.

"I'm in my 30s. Now's the time to find a husband and have a family. Do I do all of that first and then wait until my child is growing up then go into the hospital for months… that's unfair to the child," Sinkovic said. "I don't frickin' know and that's what I hate. Who's going to take care of me — whether or not I have a husband?"