One worker spends his nights caring for adults with intellectual disabilities, and his days working a job part-time to make ends meet. 

Two others left their caregiver jobs last year to become waitresses, choosing better pay over a fulfilling career they loved.

Many more are logging 60-plus-hour work weeks just to provide for themselves and their families.

Barely keeping up with minimum wage, the pay for a direct service professional stands in sharp contrast to the demands of the job. The work can be as physically and emotionally challenging as it is rewarding.

“Our direct service professionals help individuals with developmental and intellectual disabilities or severe mental health concerns thrive in their daily routines,” said Anne Riley, executive director of Human Support Services. “Activities vary from helping them bathe and use the restroom to cooking meals and accompanying them on outings where they learn job or life skills.” 

The role the direct service professionals play in the lives of clients is vital to their success, both on the day-to-day and long-term, Riley said.

But with wages that can’t even compete with fast food restaurants, getting and keeping qualified staff is an uphill battle for HSS and social service agencies like them across the state. 

It’s one of the many outfalls of the state’s chronic underfunding of intellectual and developmental disabilities’ services, advocates say. 

HSS and others are doing their best to provide the same quality, person-centered care it always has, but years of lean Illinois budgets have resulted in crisis-level staffing shortages, cuts to services and programs, and long wait-times for individuals who need special care but can’t get it.  

The impact trickles down to workers like those described above — individuals who work important, intensive jobs that must be done — but who cannot get paid what they’re worth. 

The starting rate for DSPs at HSS is currently $13.38 per hour.

“If you work here, you have to work 50 hours a week to make what you make at Target and we’re taking care of people,” said Bobbi Candler, a residential site manager at HSS. “We are struggling to get staff and to keep staff. Those who do stay are working and working and working and they are getting burnt out.” 

Right now, HSS has 46 DSPs serving 64 clients who need their assistance. Ideally, they’d like the number to be 58.

But with a turnover rate of 49 percent, keeping quality staff has been an ongoing issue, Candler said.

Since 2011, Illinois has been under a court decree to provide more sustainable funding for intellectual and developmental disabilities services to community providers. 

But even with a significant increase in funding last year, providers say years of underfunding and a critical workforce shortage during the COVID-19 pandemic demand more support.

HSS is joining other members of the Illinois Association of Rehabilitation Facilities in asking the legislature and Governor JB Pritzker to prioritize people with disabilities in this year’s budget. 

March is Developmental Disabilities Awareness Month, so IARF is calling the legislative push a March that Matters. 

“If the state legislature and Gov. Pritzker cannot do more to prioritize people with disabilities in this year’s budget, we will surely reach a crisis state — if we are not there already,” Riley said. “HSS will continue to do everything it can to make sure the impact does not reach the people we serve. But that means our agency, and our workers, will feel the brunt of the shortfall.”

The March that Matters effort includes a push for about $246 million in new state funding for Fiscal Year 2023, which begins July 1, under the proposal developed in 2020 by the state and advocates called Guidehouse. The Pritzker Administration has proposed about $95 million in new state money for next year. The main difference in the proposals involves wage levels to recruit and retain staff to meet individuals’ needs.

The Guidehouse study calls for, among other things:

• Funding wage rates for DSPs at 150 percent of the state’s minimum wage, which reaches $15 an hour by 2025

• Improved reimbursements for 24-hour staffing, and to better reflect the actual cost of providing services to meet people’s varied individual needs in response to federal mandates

“We are asking our elected officials and Gov. Pritzker not to leave people with disabilities behind,” Riley said. “Illinois finally has a stable budget and it’s time to invest in the system that cares for our friends, neighbors, and family members with disabilities.”