Amber Williams says a few things would improve her quality of life despite the cerebral palsy affecting her arms and legs.
"Being able to use the bathroom and the toilet" is one of those things. Another is "getting basic needs met" by people paid by the Springfield group home where she lived the past year to help her take regular showers and brush her teeth.
Another request by the 31-year-old Springfield native, whose developmental disabilities require that she use a wheelchair to get around, is to attend worship services on Sundays at Westside Christian Church.
Her requests, however, proved too difficult for the Medicaid-funded Broadstep group home on Springfield's west side, where she was admitted in March 2022.
As a result, she said she had to use an adult diaper, one that often wasn't changed for hours while she lay in her own waste. "It's very unsanitary and nasty," she said. She also had to go without bathing for days at a time.
She suffered urinary tract infections related to her time at the Broadstep group home on Sandy Lane, as well as several hospitalizations – all funded by the Medicaid program – to deal with the infections and save her life, she said.
"I want my life to get better, but it's not," Williams said. "I just take it day by day."
Williams spent her days recently in a Springfield Memorial Hospital bed, where she was taken for treatment the seventh or eighth time for a UTI. During her most recent hospital stay, Broadstep involuntarily discharged her from the group home because Amber's needs were "too high," according to her sister.
Amber appealed the decision, and so the situation remains unresolved.
Group homes are officially known as Community Integrated Living Arrangements, or CILAs. They serve eight or fewer adults with developmental disabilities. CILAs are operated mostly by nonprofits and some for-profit companies. The care they provide is overseen by the Illinois Department of Human Services.
Officials at Broadstep, a for-profit organization based in Raleigh, North Carolina, that operates in several states, didn't respond to requests for comment.
According to the DHS website, Broadstep has been prohibited from accepting new admissions since fall 2022 because of "unsatisfactory compliance with CILA standards." It's unclear whether Broadstep's handling of Amber Williams' case played a role in that ongoing restriction.
Williams' case may be one of the more extreme examples of inadequate care in a CILA, but it's far from unique overall in central Illinois and the rest of the state, according to Mary McGlauchlen, executive director of Central Illinois Service Access.
The Lincoln-based nonprofit is contracted by the state to oversee the care of disabled people in group homes and other settings in Sangamon County and 17 other downstate counties.
There are 48 CILA homes in Sangamon County, and Broadstep operates six of them. The state pays about $946 million per year for care in CILAs around the state, with about half of that total coming from a federal match through the Medicaid program.
"The system in general is in chaos because of staffing shortages," McGlauchlen said. "They can't recruit support people to do what is a very difficult job."
CILAs are cheaper for the state to fund than state-operated institutions, and CILAs often provide better living situations, according to advocates for people with disabilities. The average per-resident reimbursement to 24-hour CILA homes was about $91,000 in 2022, or one-quarter of the expense in a state institution, according to the Chicago-based Institute on Public Policy for People with Disabilities.
But because of chronically low funding from the state, CILAs often pay wages to direct service professionals, or DSPs, that are similar to wages at fast-food restaurants and retail stores. The annual turnover rate for those workers in Illinois is 44%, according to the public policy institute.
The staffing problem got even worse during the COVID-19 pandemic, McGlauchlen said.
Money isn't the only problem facing the thousands of CILA homes in Illinois and the 10,500 people, mostly adults, served by those homes, she said. Some CILA operators don't provide adequate training and supervision for workers, she said. The turnover results in some people working at CILAs who have less-than-desirable bedside manners, McGlauchlen said.
Brittany Williams, 32, an Auburn resident, single mother of two children and Amber Williams' sister and main advocate, used more blunt terms to describe Broadstep workers. To Brittany, they are lazy, incompetent, sometimes mean, and seemingly unable to protect her sister from aggressive behavior by other residents.
The excuse Brittany said she gets from the workers is that her sister needs more care than the other residents. But she said Broadstep accepted Amber when her health was worse and when she needed even more care.
"It's not fair that my sister can't have her basic needs taken care of," Brittany Williams said. "These places are supposed to be for the people with disabilities, but in reality, it's all about a paycheck."
Broadstep workers didn't help Amber Williams use the toilet, and she said the workers told her they either weren't trained on how to transfer someone to a toilet, it was too hard for them to do it or she wasn't strong enough to use a special lift machine to help accomplish the task.
But Broadstep hasn't helped Amber get physical therapy that could enable her to use the machine, Brittany Williams said.
Months of weekly meetings involving Broadstep, CISA, DHS and nonprofit Equip for Equality – another advocate for Amber – haven't resolved the problems, McGlauchlen said.
On top of those problems is a regulatory system in Illinois that doesn't fine CILAs and lacks any meaningful oversight power, McGlauchlen said. "There's nothing that holds them accountable," she said.
The state has increased reimbursement rates in recent years in response to the Ligas consent decree finalized in 2011 calling for increased funding for the care of people with disabilities. But Andrea Rizor, senior attorney at Chicago-based Equip for Equality, said, "We're hearing that there are still problems."
The "They Deserve More" coalition of nonprofits and others advocating on behalf of people with disabilities is backing bills in the General Assembly to build a stronger community-based system of CILAs and other services, stabilize the workforce and create less reliance on state-run institutions.
House Bill 3569 and Senate Bill 2026, backed by the coalition, would boost the DSP wage rate 50% higher than the minimum wage, beginning in January 2024, and add funding above the $1.50 per hour increase proposed by Gov. JB Pritzker in his fiscal 2024 state budget plan.
The cost to boost wages by a total of $4 per hour for DSPs and workers in other programs serving the developmentally disabled in the second half of fiscal 2024 would be $141.6 million, and the cost for fiscal 2025, which begins July 1, 2024, would be $283.2 million. Half of those costs would be covered by the federal Medicaid program, according to the Illinois Association of Rehabilitation Facilities.
Oversight by the state could be improved, as well, Rizor said. She said Illinois' regulatory system for CILAs is "very informal" and not equipped to deal with complaints.
State Rep. Charles Meier, R-Okawville, said he has been frustrated by the lack of progress in the Democratic-controlled General Assembly for bills he introduced to establish a new system for unannounced site inspections of CILAs and put other accountability measures in place.
Brittany Williams, who works in the service department of a car dealership and can't afford to quit her job to care for her sister, said she is tired of excuses from the state, CISA and other advocates.
"I'd just like to see Amber someplace where her needs are met," she said.
Dean Olsen is a senior staff writer at Illinois Times. He can be reached at [email protected], 217-679-7810 or twitter.com/DeanOlsenIT.
