The Illinois budget that goes into effect July 1st includes a 3.5% rate increase for state-funded agencies that provide services to people with disabilities.
But after more than a decade with no significant rate increases, some who work in the disabilities services sector say the new funding is not enough to ensure people with disabilities get the care they need.
Kim Zoeller is president and CEO of the Ray Graham Association, a nonprofit that manages 25 group homes for people with disabilities in the western Chicago suburbs.
She said Illinois has gone more than a decade without a significant rate increase for disabilities services, despite expenses rising 18% in that period.
“Everything costs more, but we’ve got no money to pay for it,” Zoeller said. “Think about your own homes: the cost of food has gone up, the cost to heat your house has gone up. Everything increases with inflation. We have 25 homes to support people in and have not gotten any increases to offset those increased costs.”
Inadequate funding ultimately causes long wait times for disabilities services, Zoeller said.
Direct support professionals—frontline caregivers who provide in-home care for people with disabilities—make an average of about $12 an hour, according to They Deserve More, a disability rights advocacy group in Illinois.
Zoeller said it’s a tough job, and she expects the staffing crisis will get even worse as the statewide minimum wage gradually increases to $15 an hour by 2025.
She said she worries the difference between what they can pay their workers—and what they can make elsewhere—will get even smaller unless the state steps ups its investment in services for people with disabilities.
And without additional funding from the state, agencies like hers will struggle to raise the extra millions of dollars it will cost to increase wages for their workers.
Zoeller spoke with Illinois Public Media about her concerns.
This interview has been lightly edited and condensed for clarity.
What kind of rate increase would you have liked to see in this year’s budget?
I think if we were doing an across-the-board I'd say at least a 10% increase to get us going. But our real issue, really, is the wages, because the rates are so low, the wages that we are able to pay to direct support staff, DSPs, are not competitive wages. We are unable to even compete with retail and fast food, and other jobs that are much less responsibility.
Can you talk a little bit more about what kind of work Direct Support Professionals do?
We are unable to even compete with retail and fast food, and other jobs that are much less responsibility."Kim Zoeller, Ray Graham Association
DSPs are really the lifeline for people that receive services within the home- and community-based system. DSPs administer medication, they take people to their doctors’ appointments. They work with people who have medical concerns, they also work with people who have a lot of behavioral concerns.
Many of the men, women and children who receive services are unable to use their voice to communicate. DSPs have so many plates spinning at any point in time, it's just incredible.
I think oftentimes, people think of DSPs as being babysitters. They are not at all. Without Direct Support Professionals, people that receive services in Illinois who have developmental disabilities would be in crisis everyday. They would be in and out of emergency rooms, they would not have the quality of life they have now.
Without Direct Support Professionals, people that receive services in Illinois who have developmental disabilities would be in crisis everyday."Kim Zoeller, Ray Graham Association
How bad is the staffing crisis across the state?
It is a crisis. We don't say that word flippantly.
I've been doing this work for 25 years. I can tell you that the last five years, we've seen a drastic decline in the number of people who are walking in our door to complete applications, the quality of applicants that are interested in doing this work for the rate that we are able to pay has declined as well.
It's real. We see 40% turnover approximately, and the number of vacant positions that are open at any one time around the state is alarming.
So that also puts added pressure on our DSPs, because they're working an abundant amount of overtime, probably unhealthy for them, that can create safety issues as well, when people are working exhausted.
And this can also contribute to long wait times for these types of services?
The wait isn't always easy to measure because of the way the system is designed. People are selected somewhat randomly. But you will hear stories of families that have been waiting for 10, 15 years for services. And the problem is really that providers like Ray Graham Association are not able to respond to the need to open up a new home to serve people because we don't have the staff.
So, oftentimes I will hear people say, "We will buy you a home, we'll help you get a home." The home isn't the issue. It's that we don't have any staff to put in the home.