Becky Sinkovic just needs a little help around the house.
Sinkovic, born with dwarfism, has an average torso but shortened limbs as well as several spinal conditions including: scoliosis, severe spinal stenosis, kyphosis and lordosis.
She could live independently until 2015, when doctors urged her to undergo a series of back surgeries that fused her spine to prevent permanent paralysis and required intensive physical and vocational rehabilitation in a home. local pension.
Desperate to get home, her mother — a retired registered nurse and certified case manager for Indiana University Health — enrolled her in Medicaid to supplement Sinkovic’s Medicare disability coverage. Medicaid would cover home health aides for Sinkovic, easing the burden on her mother, who was undergoing treatment for ovarian cancer that would eventually take 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 an hour, usually for three to four hours a day until her Medicaid benefits began.
Just months after Sinkovic’s return, his mother passed away. Along with losing her only living parent — Sinkovic’s father died when she was a baby — she also lost her greatest guardian.
“My mother was a great lawyer for me; she spoke for me a lot when it came to medical stuff – not in a bad way, she just knew better than me. Like how to navigate this (benefits system),” Sinkovic said.
But sometimes, after her mother passed away, no one could come from the home health agency. And Sinkovic, still bedridden at the time, remembers lying at home and urinating on herself doing nothing but sit and wait.
“I can do things now; I can manage. But at the time it was really difficult and I couldn’t imagine other people being paralyzed or bedridden and being… left alone,” Sinkovic said. “It scares me for my future and when I get older.”
Indiana Home Health
Sinkovic, 33, is one of thousands of disabled Hoosiers who need home support. And with hundreds of thousands of baby boomers expected to reach retirement age in 2030, when more and more people will begin to need the same intensive care, Indiana lacks the infrastructure. to deal with it.
In 2019, Indiana spent 35% of its long-term Medicaid services and supports funding for home and community services — which would cover home health aides — well below the national average of 59% and second lowest. from the country.
According to the Alzheimer’s Association’s 2022 report, Indiana had approximately 43,460 health care aides and home health aides in 2018, also known as direct care workers. By 2028, Indiana will need 59,990, an increase of 37.5%.
During the COVID-19 pandemic, elderly Hoosiers seeking to avoid nursing homes, which were particularly vulnerable to the virus, realized they had few options for aging in place due to shortages of providers and care. ’employees. Additionally, advocates have found that complications from COVID-19, or the long haul of COVID-19, have increased the number of younger populations in need of in-home assistance.
“When the pandemic arrived, it really highlighted the need to really reform the system,” said Dr. Dan Rusyniak, director of the Family and Social Services Administration. “If we (don’t) have a workforce that (is) in the communities, as this population of Medicaid recipients ages, it’s going to be hard to keep people at home if we’re not able to to provide services.”
Recognizing this, the Family and Social Services Administration urges the General Assembly to pay for a fundamental change in the way the state delivers services. Currently, Indiana operates on a fee-for-service model, which means states pay providers for each covered service. Starting in 2024, the agency would like to switch to a managed care model, which they believe will save the state money in the long run.
Under managed care, the state pays an insurance company to oversee an individual’s care — 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 approved services for customers.
Stakeholders knew this change was coming, but struggled to overcome the built-in challenges. Indiana has long relied on and invested in institutional care, such as nursing homes, even though the vast majority of Hoosiers prefer home care.
Low wages, benefits
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 lead to a rotation of up to 45%. The average worker was 38 years old but had only three years of experience in the field.
“No one is happy with the current situation of multiple and frequent caregivers and the compromised quality of care resulting from the inconsistency of the current (direct service provider) workforce,” the brief states.
Sinkovic has regained some mobility, even getting bariatric surgery early in the pandemic to increase his range of motion. She mainly uses her motorized wheelchair to get around, but has started using a walker for short periods.
But she still needs help at home, especially with 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 this, her home care aides are supposed to help her with some light household chores – dishes, laundry or sweeping – but some aides have chastised her for asking for help.
“Once an assistant told me sternly, ‘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 – meaning she cannot rotate her torso. Something on a top shelf would be out of reach for her.
Her benefits mean she is entitled to aides three times a day, scheduled around her shifts as a part-time phlebotomist. Beyond the occasional rude or condescending help, some stole credit and debit cards from him, even a glass coffee table.
She’s had helpers she liked, but high turnover, combined with frequent changes of providers, means she doesn’t see the same person for long.
In a case like Sinkovic’s, Rusyniak said the state’s ombudsman system investigates and responds to reports of abuse or neglect by state health care providers. But to improve the system, Rusyniak pointed to the state’s Direct Service Workforce Advisory Board and Direct Service Workforce Plan, which call for investments to build a “well-trained, reliable and stable” workforce.
In particular, the $130 million Workforce Investment Grants, launched in November, are rewarded to address low industry wages, which are below the state living wage, and inadequate benefits. At least 95% of funding must go directly to workers. In the future, the FSSA will review its pricing.
But Rusyniak noted that provider training varied widely between agencies and needed to be more comparable.
“If you’re a direct service worker, the training … It’s vendor-specific, which means you go and get hired by a specific vendor and they do the training,” Rusyniak said. “So one of the strategies we’re looking at is how do we develop more portable training and certification for people who are direct service workers so everyone gets the same kind of training.”
Advanced training would allow these workers to specialize in types of caregiving, such as caring for people with dementia or intellectual disabilities.