With low wages, Missouri disability service providers urge higher reimbursement rates

Build Back Better’s fate is uncertain, but it includes major investments for the home and community based services industry

By: - December 21, 2021 10:00 am
Life Unlimited

The Build Back Better Act includes investments in the home and community based services industry that would boost worker retention and pay (Photo courtesy of Life Unlimited).

For most of the last year, Life Unlimited has been unable to accept new residents.

At one point, the Liberty-based provider, which supports about 1,000 people with developmental disabilities through housing and other services like employment assistance, had 55 of its 330 positions open. Most were for direct support professionals that assist residents with their daily activities.

Julie Edlund, CEO of Life Unlimited, said other providers have had to send out 30-day notices letting them know that they would be unable to continue providing care.

Like many in the home and community based services industry, the organization is at “tipping point,” Edlund said.

“There are a lot of people on the waitlist. There are a lot of family members that are desperate,” she said. “There are a lot of individuals who don’t have family to take care of them, and they have nowhere to go to get services at all.”

As of last month, there were 465 people with disabilities waiting for residential services, according to the Department of Mental Health’s Division of Developmental Disabilities.

Like many industries, home and community based services providers, who assist people with disabilities and the elderly to help them live at home as independently as possible, have faced workforce shortages that have been exacerbated by the pandemic.

But Edlund is hopeful that the loss of workers can be stemmed by investments proposed in President Joe Biden’s Build Back Better Act.

Included in the $2 trillion federal legislation are provisions that would provide a permanent increase in the amount of federal Medicaid matching funds, ensure a program remains that helps funding follow people transitioning from institutions, like nursing homes, to a community setting and $1 billion in grants to improve the industry’s workforce recruitment and retention strategies.

Investments in the home and community based services industry were trimmed down from a previous amount of $400 billion allocated in the spending plan.

But the fate of the federal package hangs in the balance. It narrowly passed out of the U.S. House of Representatives last month, sending the bill to the U.S. Senate. On Sunday, a key senator said he would not vote for the spending plan, upending its future, while Senate Majority Leader Chuck Schumer vowed to press forward with the plan’s passage.

“We’re in a pretty desperate situation,” Edlund said, “if we don’t get this funding.”

High turnover, low pay

Susie Schneider and her brother John (Photo submitted).

Susie Schneider knew she needed help.

It had been her parents’ wish that her brother John, who has Down syndrome and was diagnosed with dementia, be cared for by family. John had lived with Schneider’s family for roughly 12 years until his dementia worsened.

He, “requires 24/7 care. Care that I am not qualified to give,” said Schneider, who now works as Life Unlimited’s chief employee engagement officer.

It was a difficult decision to move John into an individualized supported living setting. The process of applying took over a year, and in the meantime, Schneider got by with the help of hired personal care attendants. But the pay was low and turnover was high. Schneider estimates in a six month period, she had gone through at least one attendant a month.

“There were some that were supposed to show up, I never even met,” she said.

Eventually, John, 66, was placed in a Northland Life Unlimited home with two roommates, where two staff help 24/7.

In the five years John has lived there, staff have helped him transition from being fully mobile to now needing to use a wheelchair and receive assistance with tasks like eating, bathing and dressing. For Schneider, it’s been important that trained staff have been able to assist John long-term as his care and needs evolve over time as his dementia has progressed.

“If I could give them the world I would,” Schneider said of the staff. “What they do allows me to be able to sleep at night knowing he’s being taken care of.”

But even with reliable, long-term staff, low pay has continued to be a persistent issue that has contributed to direct support staff leaving for jobs that could offer better benefits and higher pay.

According to a 2019 National Core Indicators survey of 25 states and the District of Columbia, the turnover rate for direct support professionals ranged from 24% to nearly 65% and the median hourly wage was $12.

In Missouri, the turnover rate was at 51.5% that year with an average hourly wage of $11.67.

This year, state lawmakers allocated over $55 million to increase payments to providers, and the American Rescue Plan Act will help boost reimbursement rates with one-time funding.

“Presently, the funds in Missouri are set to pay people $12 an hour, and that’s a raise,” Edlund said. “Five months ago, the rates were based at $10 an hour, on average.”

Life Unlimited is able to offer $14 an hour, in part, due to outside fundraising. But it’s not a sustainable solution, Edlund said.

“We’re taking a real risk. If those go away, we’re in trouble,” Schneider said of donations, later adding: “It’s squeezing everything we do. We’re all working three or four jobs to make it work across the board.”

In order to compensate for the 55 openings Life Unlimited has, some employees work upwards of 80 to 100 hours a week to help fill in at homes where staff must be present to assist medically fragile residents, Edlund said.

“The burnout is really, really hard right now,” she said.

An increased federal match included in the federal plan, would help ensure increases remain long-term, Edlund said. Advocates are also urging Missouri lawmakers to continue investments and increase reimbursement rates at a state level, too.

For Schneider, having consistent care she can rely on for her brother John helped give her a peace of mind.

“I’ve seen some very amazing people leave the field that they loved, because they couldn’t support their family,” Schneider said. “And that’s gut wrenching.”



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Tessa Weinberg
Tessa Weinberg

Tessa Weinberg covers education, health care and the legislature. She previously covered the Missouri statehouse for The Kansas City Star and The Columbia Missourian, where her reporting into social media use by the governor prompted an investigation by the Attorney General’s office. She most recently covered state government in Texas for The Fort Worth Star-Telegram.