The quest to pay enough to retain caregivers of people with disabilities

SPRINGFIELD - Industry advocates and unions supporting caregivers for people with developmental disabilities are calling on lawmakers to more than double a funding increase proposed by Gov. J.B. Pritzker in February.

The Illinois Association of Rehabilitation Facilities is requesting a $4 hourly increase to the wage for direct service professionals in community-based settings that serve people with intellectual and developmental disabilities. Direct service professionals, or DSPs, are the individuals who provide daily personal care such as assisting with eating, grooming and dressing. The requested increase is $2.50 beyond an increase proposed by Pritzker earlier this year.

The $4 rate increase is also backed by AFSCME Council 31, the union representing about 4,000 workers at community facilities as well as about 4,000 employees at state-run centers.

Supporters say the increase is needed to fill staffing shortages and offer more competitive wages. The current $17-per-hour wage is just $4 more than the state's $13 minimum hourly wage, although some DSPs make more and some make less.

"Look at the cost of food, gas, rent, mortgage insurance," Veronica Lea, a DSP of 30 years at Trinity Services in Joliet, said at a Capitol news conference. "People working in fast food make more than we do. And that's, again, a shame. ... Our pay is so low that people leave. They love their job but just can't afford it."

While the Illinois Association of Rehabilitation Facilities and AFSCME are backing different proposals in terms of how providers could spend the money, each of them would bring the base wage to $21 an hour by January 2024.

'Not prepared' for most vulnerable

The rate increase is one of dozens requested by various providers in the state's Medicaid program. But it is also one that is directly pertinent to a federal consent decree governing the state's provision of services for developmentally disabled individuals.

That court filing, known as the Ligas consent decree, is the byproduct of a lawsuit filed in response to a 1999 U.S. Supreme Court decision that ruled individuals with developmental disabilities have a right to placement in the community if they desire it. Advocates for the rate increase note the state has failed to comply with the consent decree since 2017 and long waitlists for community placements persist.

According to an Illinois Department of Human Services database, about 14,900 people were on a waitlist to receive state care as of the end of March, including 5,848 adults who are seeking services and currently eligible for community placement.

Josh Evans, Illinois Association of Rehabilitation Facilities president and CEO, said if the state is to ensure community placements are available, it must provide adequate financial support for providers to be able to hire and retain staff.

"The community at large is not prepared to serve residents with higher level of needs, which are typically in the state centers right now," Evans said in an interview. "And the reason we're not able to do that right now is because we're not equipped with the staff that we need in the community to serve higher-need individuals - whether it's more complex medical conditions, whether it's higher behavioral health support needs, we're not there."

The association said its member facilities have a 25% DSP vacancy rate and a 23% vacancy rate for supervisors and case managers. Additionally, 28% of providers are unable to accept new individuals, 14% have closed or consolidated group home placements, and 72% have delayed service expansions due to staffing shortages.

Evans and union members said staffing shortages have been exacerbated since the pandemic.

Mechelle Patton, a Carbondale-based DSP, said at a news conference that the pandemic meant long hours and risk of disease due to inadequate personal protective equipment. Some staffers died, she said.

Cheryl Kakuska said she was one of several DSPs who participated in "live-ins" at their facilities during the pandemic, staying there for 24 hours a day, seven days a week as a safety precaution. She said she was asked to live in an uninsulated garage in the middle of winter.

"I started 3½ years ago, (the wage) was $12.18 an hour," she said at a news conference. "Now we're up to $17.89. But let's be honest, it's just not enough."

The Illinois Association of Rehabilitation Facilities and AFSCME are calling on the state to fully fund one recommendation of a 2020 study commissioned by the Illinois Department of Human Services Division of Developmental Disabilities and conducted by the consulting firm Guidehouse in response to the Ligas consent decree: that wages for DSPs be funded at 150% of the minimum wage. That would accelerate a six-year window outlined by the human services department to comply with the Guidehouse recommended rates.

The $21 hourly rate would be 150% of the $14 minimum wage upon its effective date. The increase would take effect halfway through the upcoming fiscal year.

The two unions, however, are backing two different proposals. AFSCME is supporting two measures - Senate Bill 1600 and House Bill 3398 - that require all $4 of the increase be directly passed through to workers.

"You must ensure that providers are required to pass through the funds for our wages rather than spend that money in other ways," Christine Rivera, an AFSCME member and DSP at Ray Graham Association, told a House committee Tuesday.

Evans said the bills the rehab facilities association is backing - House Bill 3569 and Senate Bill 2026 - would require that $2 be directly passed through to DSP wages, while the other $2 could be used more "flexibly," such as for recruitment and retention efforts. It's an agreement that Evans said was reached between providers, the state and labor in a previous fiscal year.

He said their proposals provide more flexibility to employers to pay higher wages to more experienced DSPs, as the base wage rate is an average, rather than a minimum.

'Never going to catch back up'

The total half-year cost of the increase would be approximately $151 million, according to the Illinois Association of Rehabilitation Facilities' estimate. About half of that cost would be shared by the federal government, and the annual cost would be roughly double that amount once it is implemented for an entire fiscal year.

"We need to fund this rate study proposal this year," Evans said in an interview, noting that the state is in the midst of a period of strong revenue growth that could soon be slowing down.

"Because if not, we're never going to catch back up to private industries that can afford to pay higher wages," he said.

In a Senate committee Wednesday, Illinois Department of Revenue Director David Harris urged caution for fiscal year 2024 budgeting.

Several members of the Senate Republican caucus are backing the rehab facilities association proposal. They tied the ongoing fight for funding by human service providers to a major expected spending increase for providing state-funded health care to noncitizens, a program that has greatly exceeded initial cost estimates after its implementation three years ago.

That expansion of care to people 42 and older who would be eligible for Medicaid if not for their citizenship status is expected to cost the state $990 million in the upcoming fiscal year and it is not federally matched. Senate Republicans calculated that disability services had been underfunded by about $500 million cumulatively over three years, when compared to the Guidehouse study.

"It's a disgrace that the administration has ignored and abandoned our developmentally disabled community, that has been underfunded by more than a half a billion dollars," state Sen. Chapin Rose, R-Mahomet, said in a statement. "Crafting public policy is about setting priorities, and the governor has made it clear that he is prioritizing nearly a billion dollars in Medicaid expansion for undocumented adults over our developmentally disabled community."

In a statement, a Pritzker spokesperson said the administration increased funding for services provided to developmentally disabled individuals by $108.9 million in fiscal year 2022 and $179.6 million in the current year, and has proposed a $161.3 million increase in the upcoming fiscal year 2024.

"If the governor's proposed budget passes the General Assembly this spring with these investments intact, that would mean a $449.8 million investment in the Division of Developmental Disabilities," Pritzker spokesperson Alex Gough said in a statement. "Individuals with mental illness, intellectual and developmental disabilities deserve to be treated with dignity and ought to receive the highest quality of care."

Both the Illinois Association of Rehabilitation Facilities and AFSCME credited the Pritzker administration for increasing funding to developmental disability services in recent years, including a $2.50 increase to the hourly wage for DSPs. But they noted the minimum wage rose $2 hourly over that span, making the effective increase 50 cents. The statewide minimum wage is also set to increase by $1 per hour next year, lessening the impact of the administration's proposal further.