Policy Priorities

The Guidehouse Study

  • The Guidehouse Study was commissioned by the Illinois General Assembly following several court rulings finding Illinois out of compliance with the Ligas consent decree. The Ligas Consent Decree was the result of a class action lawsuit against the state of Illinois and requires the state to provide an adequate level of resources to individuals with disabilities living in the community. The Guidehouse Study’s purpose is to bring the state into compliance with the Ligas consent decree. The state remains out of compliance with the Ligas Consent Decree, despite historic levels of investment in recent years.
  • The Guidehouse Study released its final report in December of 2020. The final report contained 10 major recommendations and a 5-year investment timeline to complete these recommendations. However, the state of Illinois has not committed to full Guidehouse implementation and has not followed the Guidehouse recommended timeline.
  • Although the state continues to claim full Guidehouse implementation is not necessary to achieve compliance with the Ligas consent decree, they have made unprecedented investments since the 2020. Clearbrook continues to advocate for full implementation of the Guidehouse recommendations.
  • Recommendations
    • Raise the wage reimbursement rate of Direct Support Professionals (DSPs) to 150% the minimum wage.
    • Establish separate service rates and raise staff compensation 15% higher than the statewide compensation in the Chicagoland area to reflect the higher cost of living.
    • Raise the non-wage benefits such as paid time off or insurance to account for 29.9% of the wages for DSP workers.
    • Expand day programs with more focus on community integration and enhance the service rates for individuals with behavioral challenges or high medical need.
    • Continue reimbursing transportation costs using the existing methodology rather than establishing a separate non-medical rate.
    • Redesign the Supported Employment Program to provide additional job coaching supports and improve the alignment between the cost and reimbursements for supported employment services.
    • Adopt a new framework to improve the adjustment of CILA program rates based on individual resource need.
    • Provide minimum round-the-clock staffing for 24-hour CILA services.
    • Adjust base nursing hours in CILA homes according to each resident’s health care level to optimize the distribution of resources and replace Licensed Practical Nurse wage assumptions with those of a Registered Nurse to ensure all required nursing services are within the practitioner’s scope.
    • Establish administration costs at CILA homes as a percentage of the program costs rather than a fixed amount to improve the allocation of costs where they are most likely to be incurred.

Funding

  • Issue
    • Despite historic investments into disability services in recent years, Illinois continues to rank among the lowest of all 50 states in terms of funding for individuals with intellectual and developmental disabilities. Prior to recent investments, disability services were largely neglected in Illinois. For years the need for investment grew, but was not addressed, setting the system back significantly. While we are now on the right track, with several consecutive years of major investments into the system, there are many issues remaining to be addressed. In order for the state to achieve compliance with the Ligas consent decree, they must continue investing into disability services.
    • The historic investments made over the past several years were also impacted by prevailing economic conditions. We were dealing with the economic fallout from the COVID-19 pandemic, historic inflation, rapidly rising private sector wages, and a rising state minimum wage. Since 2020, the DSP wage has increased by $6.50/hr. which is a major accomplishment. However, in 2020 the DSP wage was 140% of minimum wage, and today it is 137%, clearly showing these investments were diluted by outside factors.
    • There are more than 16,000 individuals throughout the state who are on a waiting list to receive home and community-based services, with over 14,000 actively seeking services. Major investments are needed to increase service capacity and ensure these individuals receive the services they need in a timely manner.
  • Solution
    • The state must commit to full implementation of the Guidehouse Study and explore additional avenues to expand the service capacity of Illinois’ home and community-based services. The investments made into the system in recent years have been tremendously appreciated by the provider community and families throughout Illinois. However, these investments were made with the understanding that any significant improvement of the system would require several years of investment. The goal should not be merely to achieve compliance with the Ligas consent decree, but to create a new and expanded system that meets the needs of thousands of individuals and families throughout Illinois.

DSP Staffing Crisis

  • Issue
    • For many years, providers have struggled to maintain a fully staffed Direct Support Professional (DSP) workforce. DSP wages are largely based on the state reimbursement rate, and that reimbursement rate is below the level recommended by Guidehouse. In recent years, many providers have been forced to delay or cancel plans to expand services, halt new admissions, or even close and/or consolidate programs due to insufficient staff.
    • Exorbitant vacancy and turnover rates among the DSP workforce creates tremendous operational and financial difficulties for providers. Individuals have less opportunities for community activities, the constant turnover creates disruption which can be hard for individuals to manage, and in general clients have less support than they deserve. In 2023, Clearbrook was forced to pay out, on average, over 19,000 hours of overtime every month, which is paid at time and a half and not reimbursed by the state.
    • DSPs are required to go through extensive trainings to become certified, and when they are certified there are tremendous responsibilities that come with the job. Individuals depend on their DSPs for a wide variety of support in their daily lives, including their well-being. The wages they earn do not reflect the value of their work. Because of this, DSPs often leave the field to join low-skill labor industries that pay similar wages such as fast food restaurants or retail stores. These essential workers can find easier work with less responsibility and training that pays essentially the same wage.
    • The state has made unprecedented investments into the DSP workforce in recent years, having increased the DSP wage rate by $6.50/hr. since 2020. However, we must take the economic conditions surrounding these investments into account. Since 2020 we have also had to deal with the COVID-19 pandemic and ensuing economic fallout, historic inflation, rapidly rising private sector wages, and the rising minimum wage in Illinois. The ratio of DSP wages compared to the minimum wage in Illinois has actually dropped from 140% to 137% of the Illinois minimum wage since 2020, despite historic investments by the Governor and General Assembly. These DSP wage increases have helped providers tread water amidst a dire economic climate, but continued investments are needed to move the system forward.
  • Solution
    • The Guidehouse Study recommends raising the standard wages for DSP workers to 150% of the minimum wage to stabilize the workforce, lower turnover, and fill vacant positions. House Bill 2788 (Faver Dias)/Senate Bill 1690 (Koehler) would provide a $2.00/hour increase to the DSP wage rate in FY26. This would satisfy the top Guidehouse priority by setting wages at 150% of the minimum wage.
    • A study from the University of Minnesota’s Institute on Community Integration, a policy research institution focusing on disability issues, analyzes the root causes for the high DSP workforce turnover and what can be done to counteract it. Their findings confirmed that low DSP wages play a major factor in the turnover rate. Their top recommendation is to raise the wages of DSP workers to levels commensurate with their skill level while taking into account the cost of living in their community to ensure DSPs make a livable wage.

Supported Employment

  • Issue
    • Securing employment for individuals with intellectual and developmental disabilities is one of the best ways to help integrate them into society. The Supported Employment program is integral to help make any employment sustainable and successful, but more can be done to help additional individuals with disabilities find employment. Currently, the only employer incentive to hire these individuals is the federal Work Opportunity Tax Credit. Individuals with intellectual and developmental disabilities do not qualify for this based only on their disability, but many individuals qualify through other means such as through a vocational rehabilitation referral or being a Supplemental Security Income recipient.
    • Illinois passed the Dignity in Pay act in 2024, which will phase out sub-minimum wage employment for individuals with disabilities and transition them into community-integrated employment. This will lead to more individuals with disabilities joining the workforce in the coming years, and more must be done to incentivize their employment. If individuals with disabilities are not allowed to participate in sheltered work, then finding community jobs for them must be a top priority. Business can be incentivized to hire individuals with disabilities, which would benefit not only these individuals, but also local business owners.
  • Solution
    • Establishing a tax credit for employers who hire individuals with intellectual and developmental disabilities would incentivize the employment of these individuals and help them become more independent and integrated in their communities. This idea across the country has had some traction since it benefits individuals with disabilities and business owners. Similar legislation has also previously been introduced and passed in several other states.
    • House Bill 1145 sponsored by Representative Suzanne Ness would provide an income tax credit equal to 25% of wages paid, but no more than $6,000, to the employers of individuals with developmental disabilities or severe mental illness. As stated previously, several other states have introduced or passed similar measures.

Early Intervention

  • Issue
    • Early Intervention (EI) services help ensure infants and toddlers experiencing developmental delays or disabilities have the best chance for healthy development. Over 28,000 children in Illinois depend on EI, which is an entitlement under state and federal law. However, thousands of families do not have access to these services and are experiencing historic service delays brought on by workforce shortages. Service delays in EI can be even more harmful than delays in other programs, as 0-3 is the most crucial time in a child’s development, and every day counts. Unfortunately, high caseloads and high turnover prevent many families from accessing the services they are entitled to in a timely manner.
    • EI service rates are inadequate, and are a major cause for the turnover in the field. Most EI providers operate in a fee-for-service model. But EI professionals mostly travel to families for appointments and are not paid for their travel time or missed/canceled appointments, and very often they do not receive health benefits either. Cross state research shows that only 36% of the time spent administering EI services is billable. Many other states have significantly higher service rates and also offer benefits to EI professionals. In Illinois we continue to see caseloads rise while we see a simultaneous exodus of EI professionals leaving the field for hospitals, schools, private practices, or other settings. 
  • Solution
    • Significant investment is needed into EI so families are not forced to deal with delays to accessing this crucial entitlement. They are entitled to these services, and the state must increase rates to adequately support the EI workforce and families. A $60 million investment in FY26 will allow for a substantial rate increase that more accurately reflects the work being done by EI therapists. Without immediate action, we will see more therapists leave the field, a continued rise in caseload, and more families forced to wait for service to which they are entitled.
  • Issue
    • EI therapy can be a life changing service for many children throughout Illinois. When it comes to developmental delays, the earlier they are identified and treated the better. A major obstacle for this program is that families are often just unaware that they are available and therefore do not seek them out. Some pediatricians recommend seeking EI services to families, but not all are familiar with the therapy available.
  • Solution
    • Aligning the healthcare system and the EI system would greatly increase the number of pediatric referrals for EI therapy. Families who are prescribed medical treatment more often than not follow the doctor’s recommendation. If the EI and healthcare systems were aligned, pediatric referrals would rise along with the number of children who are treated in EI therapy.

CILA Home Maintenance

  • Issue
    • Community Integrated Living Arrangements (CILAs) are community homes that allow many individuals with intellectual and developmental disabilities throughout the state to live in a supported environment. The cost of maintaining these homes is substantial and is often a significant obstacle for Clearbrook and similar provider agencies. Each CILA property is only allowed a one-time request of up to $15,000 for home modifications, but that is not nearly enough to cover what is needed for the home. Fire safety systems alone regularly cost more than $50,000, not to mention accessibility equipment and other home maintenance projects. Projects for these homes often have to be delayed or prioritized based on the funds available.
    • System capacity is one of the largest issues impacting home and community-based services, and the financial burden that comes with opening and operating a CILA home further prevents providers from expanding their residential services. Even if you have sufficient staff, the capital requirements and start-up costs associated with operating a CILA home may prevent or delay it from opening. All the while, the waiting list to receive services in Illinois has more than 16,000 people already waiting.
  • Solution
    • In order to aid system expansion to meet the growing demand for home and community based services in Illinois, new efforts can be made to increase assistance with the startup costs associated with opening CILA homes. House Bill 2898 sponsored by Representative Suzanne Ness would double to maximum award amounts, to alleviate some of the financial burden in opening a CILA home and to incentivize growth.
    • The maximum amounts for CILA home modification would then be $10,000 for a rented home, $15,000 for new construction, and $30,000 for an owned home. While this would still not cover all of the costs associated with opening a CILA home, it would provide significant assistance that can free up funds to further expand services.

Prior Authorization Ban

  • Issue
    • Behavioral Healthcare is rapidly growing in Illinois and across the country. Each year, more and more people are accessing these crucial services. Often, there are overly-restrictive, burdensome, and even dangerous prior authorization requirements an individual must satisfy before accessing behavioral healthcare. This delays treatment and can even act as a disincentive for Illinoisans in need of Behavioral Healthcare
  • Solution
    • House Bill 1448 sponsored by Representative Nabeela Syed would ban all prior authorization requirements for behavioral healthcare. This would only apply to behavioral health services, not medication. This would help lessen the barrier to access services for those seeking behavioral healthcare, helping more Illinoisans receive the services they need.
    • This proposal is supported by many in the Behavioral Health space including the Illinois Association of Rehabilitation Facilities (IARF), The Community Behavioral Health Association (CBHA), NAMI Illinois, Thresholds, and many other providers. Governor Pritzker has also been vocal in his support of eliminating prior authorization and step therapy in Illinois, and we hope to see his support continue with HB1448.

Mental Health Funding

  • Issue
    • Mental Health funding has become more and more of a focus in legislatures throughout the country. In Illinois, investments have been made to improve mental health services and expand access to them. Clearbrook itself has opened 3 community mental health centers that serve Clearbrook clients, and the community at large. Continued investment is needed, even on a multi-year schedule, to create an easily accessible system for these crucial services.
  • Solution
    • A $22 million increase (5%) for individual Medicaid services provided by an MHP, QMHP, and masters-level psychologists,
    • A $3 million increase for individual therapy services
    • Development of a new directed payment for CSI services – $2400/person with at least 100 units of service annually – this will total $16 million  
    • An increase in the hourly rate for mental health intensive outpatient services for children from $70/hour to $100/hour
    • A 20% increase in the DMH grant programs, supported and supervised residential grants – this will total $10 million  

CILA Rate Calculator

  • Issue
    • In February of 2023 the Division of Developmental Disabilities (DDD) announced that the implementation of the new CILA rate calculator would result in 3.7 million DSP service hours being removed from the system. This is the equivalent of nearly 1,800 full time DSPs, or 12% of the system. Providers, taken by surprise, responded rapidly calling on the state to maintain the current hours in the system.
    • After much debate and discussion, a new implementation scenario was proposed and accepted that would not remove any net hours from the system. This plan, referred to as scenario 4, includes an adjustment factor that would replace any hours lost and distribute them across the system. Meaning that if an individual’s rate was calculated and they lost some DSP service hours, those hours would be distributed evenly across the state. This is a welcome solution that will ensure individuals in need of additional hours will receive them.
    • Although the new rate calculations were completed and went into effect months ago, there is still no publicly available rate calculator to determine an individual’s rates independently. This is a major lack of transparency and forces providers to operate on blind faith in the state’s calculations. Calculations, which have often been incorrect in recent years. For example, when the state proposed a massive cut to DSP service hours, they were making calculations using outdated technology based off of data, 75% of which, was a decade old or older. The state has now updated the data they were using in the rate calculations, but providers still do not have access to the rate calculator formula.
  • Solution
    • While our advocacy efforts successfully fought off major cuts to DSP service hours, more transparency is needed to restore faith in the Department and ensure fair and accurate rate calculations are being made. The CILA rate calculator formula should be published and made available to all CILA providers. This will allow providers to plan services or expansion initiatives with accurate data, avoid any major unexpected rate changes, and confirm the accuracy of the state’s calculations. Before a new rate calculator was developed, the formula was available for all providers, but since the implementation of the new formula, providers have been in the dark on how exactly rates are being calculated. We need to restore transparency and release the new CILA rate calculator to all CILA providers.

Committee on Disabilities

    • Issue
      • Legislation concerning individuals with intellectual and developmental disabilities is assigned to a variety of committees such as Human Services, Executive, Government Administration, Education, and others. In these committees, disability issues are typically not a priority, which can cause these issues to be overlooked. There is currently no formal legislative apparatus with a clear focus on disability issues in the General Assembly, despite it being a top issue in several caucuses and for many individual legislators.
      • Illinois previously had the House Disability Services Committee as recently as 2012, but that committee was disbanded after the 97th General Assembly. Despite significant investments in recent years, Illinois continues to trail most other states in its fiscal effort for home and community-based services.
    • Solution
      • Plenty of work remains in order to improve and expand home and community-based services in Illinois. A formal committee would allow for more ideas to be considered, and more debate to be had on the best way to improve the system. It would also help shine a light on these issues which have plagued families for years, but often are overlooked for higher priority issues.
      • Establishing a committee in the House, Senate, or both would allow for legislation concerning individuals with disabilities to receive proper attention and send a message to all individuals with disabilities, and their families, that they matter. Several other states have formal committees on disability issues, and we would like to see Illinois join that list.

    Please contact the Director of Public Policy and Advocacy, Joe O’Sullivan at (847) 385-5017 or [email protected] for more information.