Providers say Pritzker’s budget for adults with disabilities falls short of solving long-standing problems

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Three years after a federal judge found Illinois had failed to meet the standards of a consent decree mandating sufficient services to residents with intellectual and developmental disabilities, Gov. J.B. Pritzker’s proposed budget falls far short of a state-funded study’s recommendation to address the problem.

The study’s five-year spending plan includes a first year increase of $329 million to the roughly $1.1 billion allocated to community providers who work with people with disabilities such as Down syndrome, cerebral palsy and autism.

Those organizations say the money would go a long way toward addressing the major issues they face: staffing shortages, a lack of day programs such as job coaching and a waiting list of more than 5,000 adults for services including housing.

Pritzker’s budget proposal calls for an increase of $122 million. While in line with the funding hikes of recent years, providers say it is not enough to meet the demand for services in Illinois and continues to push the problem down the road.

Partial funding “doesn’t change the dynamics we’re dealing with,” said Josh Evans, president and CEO of the Illinois Association of Rehabilitation Facilities. “It doesn’t change the fact there’s uncompensated care. It doesn’t change the fact that the wage rate components are inadequate facing higher minimum wages. Nothing addresses that until we can fund all of the (five year plan’s) recommendations adequately.”

Gov. J.B. Pritzker answers questions from reporters at the Tinley Park Convention Center in Tinley Park on Jan. 25, 2021.

Gov. J.B. Pritzker answers questions from reporters at the Tinley Park Convention Center in Tinley Park on Jan. 25, 2021. (Youngrae Kim / Chicago Tribune / Chicago Tribune)

Released in December, the five-year spending plan is the result of a 2018 federal court ruling that found Illinois was not in compliance with a 2011 consent decree requiring the state to make community services more accessible to those with intellectual and developmental disabilities.

U.S. District Judge Sharon Johnson Coleman ruled the state had failed “to provide the resources of sufficient quality, scope, and variety.”

Following the ruling, the Department of Human Services began a two-year review of its funding system and gathered recommendations from providers before hiring Guidehouse, a Chicago-based management consulting firm, to turn those recommendations into a spending plan. The result was the recommended initial funding increase of $329 million, followed by increases of approximately $100 million in each of the next four years.

Providers, who say they have struggled despite seeing year-to-year funding increases as part of the state’s effort to move toward compliance with the consent decree, have fully backed the multiyear strategy put forth in the Guidehouse study.

“This is such a unique opportunity,” Mark McHugh, president and CEO of Chicagoland provider Envision Unlimited, said. “There’s often the question, ‘How much money do you need to solve a problem?’ Well, this is it. It’s in black and white, and it’s right in front of us.”

Providers doubled down on their call for full funding after Pritzker on Thursday said improved revenue forecasts indicate the state will have enough money to meet its education funding formula goal with a $350 million school funding increase.

Citing building momentum in the General Assembly, where legislation urging the state to fully fund the Guidehouse study is receiving bipartisan support in both chambers, Evans said “it’s time to step up.”

DHS officials said they are making a “good faith commitment” to support community providers with the funding approved by the General Assembly. Since 2018, the department has invested nearly $381 million into rates for community providers, most recently committing $118.5 million in 2021 and $128.5 million in 2020.

“There is no end to the need across the system, and COVID has created some significant challenges for us to be able to commit to a $329 million price tag for the upcoming fiscal year,” Allison Stark, director of the Division of Developmental Disabilities for the state Department of Human Services, said.

In a recent state Senate hearing, DHS Secretary Grace Hou said the department’s budget is “strong, but not perfect.”

Meanwhile, providers say they are in a state of crisis, and have been for a long time.

Because people with disabilities are eligible for Medicaid and most often don’t have other income, providers rely on the state for the vast majority of their funding. The wages they pay their staff and the services they provide are dependent on the reimbursement rates they receive from the state.

In turn, the number of individuals providers can support is also limited by state funding. The result is a list of 7,400 adults who are waiting for access to community programs, which include group homes, job coaching and in-home support. The waiting list is expected to be reduced by about 1,600 in the coming fiscal year, leaving 5,800 adults seeking services, DHS spokeswoman Marisa Kollias said.

By that measure at least, Illinois is living up to the consent decree, which calls for reducing the waiting list by at least 640 people each year through fiscal years 2021 through 2025. After 2025, no individual seeking services can wait more five years.

While DHS is close to reaching the five-year time period, providers argue that’s far from ideal.

“Five years is a long time for an individual and family to be waiting to access services,” Evans said. “It’s hard to describe the trauma that can be involved when you have a loved one that needs medical or behavioral services that you as a parent, brother or sister can’t provide.”

Those waiting for community living either stay with family, or if they have no other option, the state can set them up in private, state-funded immediate care facilities, which are structurally similar to retirement homes. Providers said these facilities create an “institutional setting” that is often less ideal than community living.

“What you don’t want is a situation where someone — unless it’s preferred — has to seek services in a nursing home level of care, when really all they need is more independence and could really live in a smaller group home without all the medical supports because they don’t need them,” Evans said.

Some people on the list don’t need housing but do need services like job coaching or day programs, and are waiting at home without those community connections. McHugh said the goal is to have a seamless transition between the services a person with disabilities receives through the education system and the adult system.

“Many studies have indicated that quality of life for a person with disability improves dramatically if they’re integrated in the community, along with persons without disabilities,” Evans said. “This is a quality-of-life issue.”

It is commonplace for people on the list to wait years before getting placed. After the next fiscal year, the average wait time for adults will be five years, DHS officials said.

“Unless I can raise more money, I can’t expand services. And yet there are thousands upon thousands of people on the waiting list for services, and I’m ready to expand,” McHugh said. “This is our mission — to serve people.”

McHugh said his organization hasn’t expanded proposed services in years because of a lack of funding.

“The most scary part of all is really the staffing crisis,” Jim Kales, president and CEO of Aspire, a provider that serves people in Illinois and Wisconsin, said, an assessment McHugh agreed with.

The direct support professionals (DSPs) who work with those with disabilities are typically paid slightly above the minimum wage for jobs that require long hours of giving physical and mental care.

“When you’re paying just a touch about the minimum wage … it’s just not enough to attract the best people to come into this field and really do right by people with disabilities,” Kales said. “These are hard jobs.”

In her 2018 decision, Coleman identified low wages for direct support professionals as a primary drive of limited services.

In a recent state House hearing, John Pingo, CEO of provider Goldie B. Floberg Center in Rockton, said the status of the staffing crisis recently drove him to close two group homes. He said the center currently has 29 staff vacancies, surpassing the agency’s “crisis point” of 20 vacancies.

Burnout is widespread, Kales said. Aspire and its sister agencies experience an extremely high turnover rate of employees, with a statewide rate upward of 50% a year. The turnover inevitably affects people with disabilities, who often depend on settling into a routine with their DSP.

“If they’re constantly having the person working with them changing every month or every two months, it creates dramatic turmoil in their life,” Kales said.

People with disabilities in Illinois tend to be placed in much larger settings compared with programs other states provide, according to Kales. Whereas group homes in Illinois largely err toward the maximum of eight people, Kales said homes in Wisconsin and elsewhere typically house one to four residents.

Kales said Aspire recently opened a new home in Brookfield, Illinois, where four men who had previously lived in eight-person homes moved in.

“I’m telling you, you could see such a difference,” Kales said. “You could just tell it felt like their home as opposed to, unfortunately, larger homes that sometimes feel more institutional. That’s the last thing we want for people.”

To Kales, whose organization works in both Illinois and Wisconsin, the differences in funding — and consequently in individual experiences — are stark.

“It’s hard doing this work in Illinois,” he said. “The funding for community-based care — to be really included in the community, to work a job at the local Mariano’s, to live in their own home or apartment — the funding for that kind of support in Illinois is about half of what it is in our neighboring states.”

Additional funding, if possible, would have to come with the approval of the General Assembly. State Sen. Mattie Hunter, a Chicago Democrat who sponsored legislation urging “the State of Illinois to fully fund the Guidehouse final rate recommendations,” said she will continue advocating for necessary funding, “even if it happens one recommended priority at a time.”

“The Illinois I/DD (intellectually and developmentally disabled) community system needs increased investment because it has suffered from decades of fiscal neglect that significantly contributed to the state becoming subject to a federal consent decree in 2011,” Hunter said in an email. “Sometimes, the state needs a little push even after an initiative like this is formed into law.”

jwhidden@chicagotribune.com

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May 11, 2021 at 06:55AM

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