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 here at Human Support Services (HSS) are logging 60-plus hour work weeks just to provide for themselves and their families.

The work can be as physically and emotionally challenging as it is rewarding. Yet day in and day out, our staff show up and make a difference in so many lives.

“Our direct service professionals (DSPs) help individuals with developmental and intellectual disabilities or severe mental health concerns thrive in their daily routines,” said Anne Riley, executive director of HSS. “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.”

They work tirelessly, sacrificing so much for others, yet year after year have to settle for pay that is less than they deserve due to the state’s chronic underfunding of disability services.
The pay for a DSP barely keeps up with minimum wage, with a starting rate of $13.38 per hour.

Lean State Budget Impacts Clients and Staff

Years of lean budgets in our state have left their impact in other ways, too: causing cuts to services and programs, and long wait-times for individuals who need our help.

But because HSS is committed to providing the same person-centered care that we always have, the impact is most significantly felt by our staff. These are individuals who work important, intensive jobs that MUST be done — but who cannot get paid what they’re worth.

“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, one of our residential site managers 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 direct service professionals serving 64 clients who need their assistance. Ideally, we’d like the number of DSPs to be 58.

But with wages that can’t compete with even fast food restaurants, getting and keeping qualified staff is an uphill battle. Our turnover rate is 49 percent.

“It’s disheartening, because these are professionals who love their jobs, and who have an innate desire to help others and make our community better. Many also have an emotional attachment to the profession, winding up here because they have a friend or relative with a developmental disability. But they are forced to leave, because they need to be able to pay their bills and/or support their families,” Candler said.

Agencies Call for Increased Funding for I/DD Services

Since 2011, Illinois has been under a court decree to provide more sustainable funding for intellectual and developmental disabilities (I/DD) services. But even last year’s significant budget increase was not enough to offset years of underfunding and a critical workforce shortage during the COVID-19 pandemic.

This month, which is Developmental Disabilities Awareness Month, HSS is joining other members of the Illinois Association of Rehabilitation Facilities in asking the legislature and Governor Pritzker to prioritize people with disabilities in this year’s budget.

The legislative push is called a March that Matters.

“If the state legislature and Governor 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.

“We will continue to try to do more with less in a job that is already so physically, mentally and emotionally demanding. Because the people who work here are invested in our mission, which is to ensure all abilities are embraced and everyone is encouraged to pursue their greatest potential. But it will not be easy, and we will continue to battle a workforce shortage that sends talented, caring individuals to less-demanding jobs with higher wages and better benefits,” Riley said.

March That Matters – Effort to Push New Funding

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 direct service professionals (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 Governor 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.”

You can help by encouraging our legislators to increase funding for services for individuals with intellectual and developmental disabilities, and educating your friends and families about the importance of agencies like HSS.

Pictures are worth a thousand words but there isn’t a photograph that will show you all that we do here at Human Support Services (HSS.)

Our services are complicated and not always pretty.

Suicide prevention, substance abuse treatment, job training for those with intellectual or developmental disabilities – these are not the billboard photo-worthy services that capture the hearts of the public with endearing images.

And yet, these services are life-changing, and in many cases – LIFE-SAVING.

We know that the services we’ve been providing for the last 47 years have made a significant, positive difference in the lives of those we serve. Even more, we know we have made a lasting impact in our entire Monroe County community.

We hope that you know it too.

Our clients are your neighbors, your friends – maybe even your child, sibling, or parent.

We come to you now with our hearts in our hands because WE NEED YOUR HELP. Like so many, we have suffered great losses in 2020.

For the first time in decades, HSS has lost all funding from United Way of Greater St. Louis due to the change in their funding priorities

• Cost of Loss – $213,000

Our Community Day Training Services were not allowed to operate from March through September per state mandate due to COVID-19

• Cost of Loss – $48,642

Major fundraising events such as our Shine Your Light Gala, Trivia Night, and the annual Celebration Banquet have been canceled

• Cost of Loss – $99,000

We have seen a counseling reduction in demand for services due to stay at home order for COVID-19

• Cost of Loss – $43,226

We are asking you to help us Invest in People. Donate to HSS today.

Donations are tax-deductible and will be used for people in our community to get the help they need. Please consider giving a gift to support HSS.

Pledge Form Donate Now

Broske got the job at Pizza Hut with training and assistance from the job coaching program here at Human Support Services (HSS). He says he likes his work there, but he wonders what else he might be good at.

That’s where our new PAES lab comes in.

PAES, which stands for Practical Assessment Exploration System, is a hands-on work training lab for adults and students with IEPs in grades 9 to 12.

The walls of the lab are lined with color-coded boxes, representing five career areas: Business/Marketing, Construction/Industrial, Consumer/Service, Processing/Production, and Computer/Technology.

Inside each box is the instruction card for a task designed to replicate a skill typically required at one of roughly 300 different jobs in the community in those five categories. For example, under Business/Marketing, one task might be to alphabetize a series of items. Such a skill would be mandatory at a variety of jobs in that area, from office assistant to video store clerk.

The boxes include all the materials needed to complete each task – whether it is mixing bowls for cooking/measuring or a drill for a construction job.

“The student clocks in like a job,” said Jessica Liefer, director of person-centered services. “They get their assignment and have to complete the steps for that task. The instructor evaluates them on their strengths and weaknesses, and how much they enjoyed the task. It helps the students explore what they like and what they’re good at.”

The trained instructor determines clients’ interest in specific work areas, competitiveness with peers, and assesses present barriers to future success, and then helps change them to positive work behaviors.

Students Already Learning Fast

More than 30 individuals have used our PAES lab so far, but in the months to come, more than 100 will utilize the system. The amount of time a person spends in the lab varies, from a few hours once a week, to two hours, three times a week.

“Everyone starts at the top and works their way down, advancing to the next level,” Liefer said. “For some it’s an hour-long job – for others it takes longer, depending on the difficulty and the person.”

The PAES lab, which was installed in June, was funded by a grant in partnership with the Illinois Council on Developmental Disabilities and the Monroe-Randolph Regional Office of Education. Two staff members from Columbia School District #4 and four staff members from Waterloo School District #5 have already been trained on the use of the PAES lab.

“The teachers were excited about having this as an option,” Liefer said. “The students get to try out many different simulated career fields and decide if they want to look for a job in certain areas. It also helps develop appropriate work skills and behaviors, prior to working in the community.”

In the PAES lab, students are treated as an employee and the instructor is their supervisor.

“The expectation is that they’re an employee working on that job,” Liefer said. “So it teaches them to problem solve and it helps them get comfortable with having a boss and having to follow directions.”

So far, Broske’s tasks in the PAES lab have included alphabetizing a long list of items and measuring exact cups of flour and sugar. It’s the former he enjoyed most, he says.

“Every time I go to the PAES lab I learn new things,” said Broske, who dreams of one day working in the music or hospitality industries.

As the PAES lab continues to grow in use, we are in need of help from the community. We need audio job cards that allow students who are unable to read to follow the instructions independently. The cards, which can be purchased through Talent Assessment, cost $1,295.

We are also looking for more materials to add to the task boxes in the lab. A full list of needed items can be found here: https://www.amazon.com/hz/wishlist/ls/2JNRKZXV4KGNC?ref_=wl_share

Please help us spread the word about this great new program!