Advocacy letter asking for increased funding for direct service provider wages

 Dear Governor Pritzker,

We Deserve More is a statewide coalition made up of families and friends of people with intellectual and developmental disabilities and the nonprofit community providers, and advocacy organizations who support this population. Our main goal is to increase wages for direct service professionals (DSPs) who provide 24/7 support to individuals with intellectual and developmental disabilities. 75% of DSPs are women, about half are minorities, and a large portion are over 60 - facing poverty in retirement. Fewer and fewer young people are choosing this work. Without fair wages, we will never have enough people doing this necessary work.

The average hourly pay for direct service professionals in Illinois is $15 an hour, i.e. minimum wage. This is not a sustainable wage and leads to high rates of turnover in direct service staff. High rates of turnover mean that DSPs receive less training, cannot build as much expertise through experience, and fail to build lasting and meaningful relationships with the clients who depend on them. Those who remain in the field are incredibly dedicated and compassionate. They deserve adequate compensation. 

Your proposed FY26 state budget includes a 50 cent-per-hour DSP wage increase. However, the budget also includes a 50% rollback of the Community Integrated Living Arrangement (CILA) rate adjustment factor. CILAs provide opportunities for people with disabilities to live in the general community with peers. DSPs are necessary to CILA living. The FY26 budget means that DSPs will barely make more money, while programs will have less state funding to hire staff. We stand to lose at least 430 DSPs statewide. 

Many programs already face staff shortages due to the low pay and difficulty of the work. The proposed budget will put more pressure and stress on the backs of direct service professionals and lead to fewer opportunities for individuals with intellectual and developmental disabilities to live in CILAs. More than 16,000 people are currently waitlisted for CILA placements due to staff shortages. Those people are either living at home with family struggling to provide support or in state-run facilities that cost the state more than CILAs, 3 of which are under investigation by the DOJ for abuse, and at best face staff shortages and provide minimal access to community. The people who most need community support should not suffer due to efforts to balance Illinois’ budget. 

For more information on this issue, please visit our website. People with developmental and intellectual disabilities must not be left behind. 

This is a fine example of how to write an advocacy letter.  You explain the situation briefly.  The problem is fairly easy to grasp: people who provide living support services to persons with cognitive or developmental disabilities are underpaid—severely underpaid.  The Governor has proposed a small increase in the base pay for these workers, but has also cut the Community Integrated Living Arrangement rate adjustment factor.  You quantify this with a statistics (430 fewer Direct Service Providers in the state next year). 

I like in particular how you explain the real damage to the quality of services that comes from having wages for DSPs so low. I also like your point that CILA placements may save the state money if they are compared to the alternative of the state-run facilities.   By the way, during the social work advocacy day while we were in the capitol, we saw the DSPs and some of their clients in the rotunda, shouting that they deserve more.  

I think when you want to know how civilized a society is, you need to look at how they treat prisoners, animals, and persons with cognitive or developmental/physical  disabilities. I know someone who has been a direct service provider.  I remember that for a while, while both she and her husband were employed, they didn’t have enough money to afford housing, and they had to double up in a relative’s home with their children all living together for several months. 

I wonder how much it would cost the state to raise wages of all the DSPs up to $17 or $18.  

A student asks Senator Duckworth to improve law and funding for developmental disabilities services

Dear Honorable Senator Tammy Duckworth

       I am from Springfield, IL, and have lived here since I was three years old. I graduated from Springfield Public School District 186, and am currently attending the University of Illinois, Springfield. I am a social work student, and I am hoping to provide change and support to the community that gave and taught me so much. 

      The reason I am writing to you is because of the lack of Transition options for Illinois students with disabilities. I work as a paraprofessional in Springfield Public Schools and am placed in a school with a high disabled population. That school is Edwin A. Lee Elementary School. According to the Illinois Report Card, 57% of Edwin A Lee Elementary student population has IEPs, 28% have a developmental delay, 33% have a speech and language impairment, 3% have autism, and 2% have multiple disabilities. Working alongside these students and trying to help them succeed, I have witnessed the lack of transition options for our students after they graduate from Lee. 

At Lee, our students with learning and developmental disabilities can attend to the age of 22. We provide them with an education that focuses on independence and workplace competence. Our hope and aim are that when our students graduate, they can get a job and be as independent as possible. After graduation, though, the lack of programs and initiatives available to our students is hindering that dream. The goal of a more inclusive society where these persons can be more independent is tragically thwarted by the cost of at-home health care, the price of adequate and safe group homes, the lack of government activities that help them get jobs, and the low number of organizations willing to employ the disabled. Some of our students graduate and get in contact with a job counselor, but the waiting list is so long it sometimes takes over a year for them to get in touch. Over that period, their skills and abilities can turn rusty and even become lost though disuse, and that can further inhibit them from getting a job. My wish is that the Individuals with Disabilities Education Act gets expanded and that the result is our community offers more services. We should not “throw away” these people, and I fear that our failing to assist their transition from school to adulthood is doing just that. These persons have valuable contributions to make to their communities. What is best about our society is our concern that we help everyone develop their full potential and live with as much self-sufficiency and autonomy as possible. We are needlessly falling short when it comes to the practical help we give to persons with developmental disabilities as they transition from school to adult life.

I hope that through the act, more coordinators and transition heads are placed in every county in the state. I wish more job coaches positions are made, so that way, the waiting list can be shortened, and more individuals can be helped and not put on a waiting list. I also hope that schools with a high disabled population get their transition coach who focuses on confirming that the students get the help they need when they graduate. Through the act as well, I hope that the individuals who are not able to get a job are provided more assistance so they can go to a safe group home and not have to compromise safety for cost. I also hope that home health care costs paid by the developmentally disabled persons and their families goes down as well, to help the families who are taking care of their loved ones with disabilities. The school district should help with transition planning, so they are not leaving students in the dust where they are not able to fend for themselves. Focusing on transitioning not only helps the schools, but it improves the students. 

I know that assistance like this is at a cost, and I believe one way we can pay for is a property tax and fees that every student has to pay for public education. I am willing to pay a little more in taxes for the betterment of our disabled citizens so they can have the same opportunities. Making sure every citizen has an equal opportunity is significant. I believe that improvements to the laws and increases in tax revenue could be made attractive to voters and taxpayers if we: 1) show them the direct costs in terms of dollars per month they would be paying to help persons with developmental disabilities; and 2) show them exactly where that sort of money goes; and 3) explain the evidence that the services are efficiently helping persons with developmental disabilities and their families. 

Thank you for your time, 

Adults with Developmental Disabilities

Reflection Paper

In class we talk about many different populations of people, but I think that one that gets overlooked is adults with developmental disabilities. I worked in a sheltered workshop for a little over 7 years and have seen first hand the kinds of financial difficulties they have. Just like children, these adults, don’t have much of a voice when it come to their own personal finances. Most of them do not understand the concept of money.

A lot of adults with developmental disabilities live in group homes. Much of their financial income is determined by the state. They are covered by Medicaid, SSI, SSDI and some receive SNAP. According to the Social Security Website most are covered by SSDI (87%), if their parents had a work history and the person was diagnosed before the age of 18.  I knew a few others that qualified for Black Lung Survivors Benefits.

Case workers scrambled to make sure that no one clients savings got over $2,000 for fear of them losing benefits. A couple years ago there was a panic when they reduced the amount of cash that was disbursed every month to clients in ICF group homes. For most it went from $60 to $50 or $40. Ten or twenty dollars does not seem like much to most, but they use that for things most people take for granted. Haircuts, a coffee, new shoes, clothes, or entertainment. Often clients that went to the workshop could not go on any outings that month because they lacked the funds. These were not extravagant outings. They were things like going to get a coffee, ice cream, or go to the zoo. 

A good thing was the clients never had to worry about healthcare, housing, or food. That was covered. When they got $60 a month that put them at $2 a day for cash. They were better off than pretty much everyone in the book $2 a Day since they don’t have to worry about food or shelter. These people can not advocate for themselves, although some try their best. One client from an ICF home knew that he would only get a certain amount of cash each month no matter how much he worked. It was sad to see some of the clients that had no concept of money working every day, sometimes making upwards of $200 a paycheck. They never get to see that paycheck. They get the allotted $40-$50 and the rest goes towards their room and board. 

Like anyone else, disabled or not, we want independence. Many of these clients could make a wage enough to pay for outings, clothing, haircuts, entertainment, or anything else that they need without going without new shoes for several months due to lack of cash funds. A higher functioning client wanted so badly to get out of the workshop and into the community working. She walked everywhere, went to interviews, and eventually landed herself 2-part time jobs while working at the workshop. She wanted to better herself and make enough money to do the things she loved. Since she was bringing in “too much” income she had to start paying into Medicaid.

I know there must be limits to what people can get because I can see it getting out of hand. Where is the line drawn though? If you increase their benefits so they have more cash, then that money is probably coming out of some other program. If you let them make as much as they want without losing benefits the state will be losing money. I believe that every adult with a developmental disability should be able to keep what they earn. Obviously if they make an obscene amount of money then yes, they should pay for some of their benefits. I don’t see the harm in them keeping what they earn.

Educational and Opportunities for Developmentally Disabled Savings Pool

Here is a student editorial I wanted to share. 

I am writing in favor of House Bill 3032 which states that this bill 

...authorizes the state treasurer (Illinois) to establish and administer an Educational and Opportunities for the Developmentally Disabled Savings Pool to supplement and enhance the investment opportunities otherwise available to persons seeking to finance the cost of providing expanded educational and employment opportunities to persons with a developmental disability. Provides that participants in the pool are required to use money distributed from the pool for qualified expenses. Contains penalty provisions. Creates a deduction for individual tax payers equal to the amount contributed by the tax payer up to $20,000 to an Educational Opportunity for the Developmentally Disabled Savings Pool account during the taxable year. Effective immediately.

I believe this bill should be passed for various reasons, one of which being that the state of Illinois could finally recognize all people within it’s borders as productive, contributing citizens to their communities, and therefore are worthy of having such a resolution passed to help supplement their educational goals. According to www.progressiveservicesnetwork.org, Illinois is dead last to provide appropriate services to those with disabilities. Those with developmental disabilities (DD) would be able to be productive, contributing citizens in their communities and those that choose to contribute to the pool will get a tax write-off up to $20,000. With the Illinois economy the way it is right now it is crucial to save every dime we can by claiming it on our tax returns.

                                                                         

                                 

According to an article by Amanda Drapiewski for the Southwest Suburban News/Herald in Chicago, the estimated lifetime costs for those born in 2000 with DD are expected to total more than $50 billion for people with mental retardation and $11.5 billion for people with cerebral palsy. The act that is being brought up for amendment could greatly lower the costs of people having to pay taxes for the care of people having developmental disabilities, and it gives the citizens of Illinois the chance to choose how much they want to contribute to the pool.

   

In today’s society we preach equal opportunity for everyone. By providing a well-rounded education and equal employment opportunities for those with DD we would set a very good example for our future generations. Parents contributing to this pool will set an example to their children to also contribute in the future to a worthy cause. Also, it’s about time for a bill like this, because it is the twenty-first century and we need to get with it when it comes to helping people with developmental disabilities. 

Many more bills are needed to help improve the lives of people with DD, but this is a good start. As stated on www.progressiveservicesnetwork.org, Illinois ranks 43^rd lowest of the 50 states and DC in funding community-based support and services for individuals with intellectual/developmental disabilities. Illinois also ranks 51^st of the 50 states and DC in the percentage of individuals with DD living in community-based residential settings. Obviously, much more needs to be done. I believe passing this bill will encourage people to contribute to the pool and help get the ball rolling as well.