CAREGIVER CRISIS IN ILLINOIS

Over the last decade, people with 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, greatly enhancing the quality of life for people in their care.

Despite the life-changing work and impact DSPs provide to the wonderful people they serve, they earn wages that place them below the poverty level which has caused a staffing crisis in Illinois, as so many of them reluctantly leave for other opportunities with higher pay so they can support their own families.

The critical shortage of DSPs is threatening the ability of non-profit community providers to meet the needs of thousands of Illinois residents who live in these settings.

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 now just $10.49 per hour, according to the most recent National Core Indicators Staff Stability Survey.

They Deserve More works to ensure that people with intellectual and developmental disabilities throughout the state get the services they deserve...by fighting for better wages for DSPs who care for them.

After nearly a decade with nothing from the state, two small raises were achieved totaling an additional $1.25 per hour.

Support Senate Bill 1148 and House Bill 2148: Provide livable wages for DSPs.

While this was a step in the right direction, much more is needed to ensure that the state fulfills its critical obligation so people with disabilities have access to the quality care and opportunities they deserve.

Anticipated minimum wage increases, which are important and necessary, will make the problem even more challenging – when you can make $15 an hour at Amazon, it’s sadly an easy choice. Caring, compassionate people who want to do this important work simply cannot afford to.

Funding is critical in order to support administrative and operational expenses of homes and programs for people with disabilities. However, the state of Illinois has not taken into consideration the rise of inflation and cost of doing business for more than 15 years.

Children and adults with disabilities and their families now 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.

We call on state leaders to make the needs of individuals with intellectual and developmental disabilities a top priority. People with disabilities deserve more – they need caregivers who earn at least a living wage.


By The Numbers

$10.49 average hourly starting wage for a direct support professional in a community setting
$13.38 average hourly wage for a Walmart full-time worker
11 years since the state increased Medicaid rates earmarked for providing care to children and adults with developmental disabilities.
18 percentage rate of inflation over the same ten-year period
50 percent of DSP wage increase that will be covered by federal Medicaid matching
40 percent some agencies are understaffed; a dangerous gap
47 Illinois’ rank among states for spending commitment for people with disabilities
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