CAREGIVER CRISIS IN ILLINOIS

Over the last decade, people with intellectual and developmental disabilities have increasingly moved to community-based settings that provide daily life skills, support active engagement in the community, and foster an independent and safe environment.

Direct support professionals (DSPs) are the trained staff who provide that dedicated care and support. Unfortunately, DSPs earn woefully inadequate wages, which has caused a staffing crisis in Illinois as many of them leave for better paying jobs.

People with disabilities deserve the opportunity to lead a full, meaningful life. But they must have support for everything from eating, bathing and administering medication to job and life-skills training. That support comes from DSPs whose starting wages, on average, are reimbursed by the state at just $13 an hour. This acute staffing crisis has been compounded by the state’s overall failure to adequately fund nonprofit provider agencies that serve people with disabilities.

As a result, people with disabilities and their families face constant change and uncertainty. And worse – it can be dangerous, even life-threatening, when there isn’t enough staff. More and more providers are forced to shut down programs and turn people away who need and deserve support. The wait list for services is nearly 20,000 in Illinois. The state meets other obligations – funding jails, skilled nurses and schools. Illinois needs to make people with disabilities a priority.

Amidst the COVID-19 pandemic, DSPs are among our frontline heroes, going to work every day to keep people with disabilities safe and healthy, and to provide care and a sense of normalcy. But, ironically and unfairly, DSPs are also among the low-income workers who will be hit hardest by the pandemic’s economic and societal fallout.

They Deserve More, a coalition of nearly 90 agencies and organizations, was founded in 2017 to ensure that people with intellectual and developmental disabilities in Illinois get the services they deserve. After nine years without a DSP wage increase, a few small raises were secured, resulting in the current $13 an hour reimbursement. Additionally, the 2019 state budget provided the first slight cost-of-doing-business increase in 11 years for programs for people with disabilities.

Support SB 3269 and HB 5074 to increase state funding for people with disabilities by 20% — with 75% of this increase dedicated to DSP wage reimbursements.

Upcoming minimum wage increases are great for Illinois workers, but they threaten to undo the progress we’ve made. When you can make $15 an hour at Amazon or $26.50 as a census worker, it’s sadly an easy choice to leave. This problem is even more dire in Chicago, where the minimum wage will rise to $14/hour in July. At the same time, the state hasn’t fully taken into consideration the rise of inflation and cost of doing business.

The General Assembly will take up a state budget this spring with billions fewer dollars to work with because of COVID-19. Now more than ever, it is imperative that legislators include a permanent increase above minimum wage for DSP wages and provider operations. Two bills introduced in the General Assembly – SB 3269 and HB 5074 – provide a comprehensive solution by raising DSP wage reimbursements to a sustainable level and funding providers’ crucial operations. It’s time to solve this crisis. People with disabilities deserve more.


By The Numbers

$13 State reimbursement for the average DSP wage effective January 1, 2020
$26.50-$29.50 Census worker hourly wage range in Cook County according to 2020census.gov.
 53.7% Turnover rate of direct support professionals in Illinois — 2.4% higher than the National Core Indicators average of 51.3%.
30% DSP vacancy rate at two of the largest provider agencies in Illinois.
3.5% Cost of doing business adjustment provided in 2019, the first in 11 years, compared to a 20% increase in the rate of inflation in Illinois.
19,436 Illinois is one of just five states with a waiting list for home and community-based services that is greater than 15,000 individuals.
47 Illinois’ rank among states for spending commitment for people with disabilities.
25% In the last 20 years, the state minimum wage has increased 80%, while DSP wage reimbursement has increased only 25%.
27,000 children and adults with developmental disabilities who depend on services
Hundreds of Thousands parents, siblings, family members of children and adults with developmental disabilities who rely on DSPs to care for and support their loved ones