Policy Priorities

The Guidehouse Study

  • The Ligas consent decree requires the state of Illinois to provide a sufficient level of community resources to individuals with intellectual and developmental disabilities. It was established following a class action lawsuit on behalf of individuals with intellectual and developmental disabilities.
  • Following several court rulings finding Illinois to be failing in providing sufficient resources to individuals with intellectual and developmental disabilities, the state commissioned a study to analyze the community services provided to individuals with disabilities.
  • This study, known as the Guidehouse Study, contained 10 recommendations and a 5-year investment timeline to improve the disability services system and bring Illinois back into compliance with the Ligas consent decree.
  • Guidehouse recommended a $329 million investment by the state for Fiscal Year 2022, followed by continued investments through Fiscal Year 2026. However, the state of Illinois has not committed to full Guidehouse implementation. Since Fiscal Year 2022, the state has made some significant investments into disability services, but even these investments fall far below the amount recommended by Guidehouse.
  • 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.

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 were not given prior notice of this massive cut. Obviously, providers were shocked by this news and responded quickly and passionately calling for the restoration of hours. DDD prudently paused implementation to find a more agreeable solution. This pause was extended several more times and is in effect until March 31, 2024.
    • Since the pause began, months went by without clarity of the situation and little to no communication to providers. This lack of transparency prevented providers from gaining insight into DDD’s progress with the new plan and what should be expected when it is implemented. We were told shortly before seeing the proposal that this is a plan most providers should be happy with. The proposal contained 3 implementation scenarios, all of which contain DSP service hour cuts. With the DSP workforce in crisis, a massive cut to DSP staffing hours is ill-conceived and would likely result in many providers closing facilities, cutting services, or shutting down altogether. Descriptions of each scenario can be found below:
      • Scenario 1: 2.5 million DSP hours removed.
      • Scenario 2: 105 k DSP hours removed and zero-hour staffing implementation which will require additional staffing.
      • Scenario 3: 2.87 million DSP hours removed.
  • Solution
    • Any implementation of a new CILA rate calculator must allow providers to adequately prepare their organizations and adjust their staffing plans. An implementation pause through January 1, 2025 is recommended. The extended pause affords providers the time they need to prepare for implementation, especially if that implementation results in large staffing hour cuts. There are hundreds of community providers throughout the state who must diligently consider the 3 implementation scenarios, agree on the least egregious option, adjust their organizational staffing plans, and implement DSP staff cuts. Given that it took the Division of Developmental Disabilities 10 months to even share their plan with providers, providers deserve ample time to review the implementation scenarios.
    • An implementation pause through January 1, 2025 would also give providers the opportunity to advocate for fully funded DSP hours in the FY25 budget. Avoiding cuts to DSP service hours is estimated to cost $86.6 million ($43.3 after federal matching funds). Given the past few years of investment from the General Assembly, it is likely many legislators would support this effort to preserve the current level of DSP staffing. Several hundred million dollars have been invested into disability services over the past few years and even Governor Pritzker stated the human services staffing shortages are a top priority for his administration in his 2023 State of the State address. The General Assembly deserves the opportunity to consider this funding request for FY25 and beyond.

DSP Staffing Crisis

  • Issue
    • For many years community providers have had tremendous difficulty maintaining an adequate DSP workforce. A survey was conducted with community providers in the summer of 2022 to assess the status of the DSP staffing crisis, and the findings show how severe the crisis has become. On average, Illinois providers are experiencing a 25% staff vacancy rate. 72% of providers have had to delay or cancel plans to begin new, or expand existing, services due to lack of staff. 28% of providers are not admitting any new individuals into services due to staff shortages.
    • In 2022 the Federal Bureau of Labor Statistics recorded over a 5% increase in private sector wages, the largest ever recorded. As DSP wages are almost entirely dependent on state funding, a significant increase is needed to keep up with other companies in the current job market.
    • DSPs provide high level care to individuals with disabilities and in order to become a DSP, workers must complete 120 hours of training. Inflationary pressures, the rising minimum wage, and rising private sector wages are contributing toward the high level of DSP turnover which providers are experiencing. Many DSPs are transitioning to low skill labor industries such as retail stores and fast-food restaurants. The reason for this is because other jobs pay higher wages with less training for easier work. The work that DSPs perform requires expertise, diligence, patience, and compassion.
    • The state has made significant investments into disability services in 3 consecutive state budgets, which is a major improvement after years of underfunding. However, these investments were far below the full recommended amount and based off of a study that was completed prior to the onset of the COVID-19 pandemic and the ensuing economic fallout. The state has still not committed to fully implementing the recommendations from the Guidehouse Study, which they commissioned. While the recent years of investment were much appreciated by community providers, continued investment is needed to raise DSP wages to a level to be competitive in the job market.
    • Economic factors such as inflation, rising private sector wages, and the rising minimum wage have severely mitigated the impact of recent investments. The DSP wage, despite increasing by $5.50/hour since 2020, is further away from the benchmark goal of 150% the minimum wage than it was in 2020. The investments in DSP wages are appreciated, but they are not significant enough. Providers have been able to tread water, but unable to make any significant progress in DSP staffing.
  • Solution
    • The Guidehouse Study recommends raising the standard wages for DSP workers to 150% of the minimum wage statewide to stabilize the workforce and fill vacant positions.
    • 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.

Employer Tax Credits

  • 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 certainly 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.
  • Solution
    • HB 2466 (Ness D-66) would incentivize the community employment of individuals with intellectual and developmental disabilities. The legislation 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.
    • 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. North Dakota passed legislation identical to HB 2466 to establish such a tax credit program for the employers of individuals with developmental disabilities or severe mental illness. Similar legislation has also previously been introduced and passed in several other states.

Funding

  • Issue
    • Illinois ranks among the lowest of all 50 states in terms of funding for individuals with intellectual and developmental disabilities. Although in the past three years Illinois has made significant investments into the system, it is far below the fully recommended amount. Because Illinois’ long history of underfunding disability services, several consecutive years of significant investments are needed to bring Illinois back into compliance with the Ligas consent decree. Low funding is behind the majority of the issues impacting disability services in Illinois, including but not limited to, the DSP staffing crisis.
    • There are more than 15,000 individuals throughout the state who are on a waiting list to receive home and community-based services.
    • Today, DSP wages are farther away from the benchmark goal of 150% the minimum wage than they were in 2020. Economic factors such as inflation, rising private sector wages, and the rising minimum wage have all mitigated the progress we have made in recent years’ investments.
    • While progress was made, it is not close to the amount required. Illinois continues to maintain the position that full implementation of the Guidehouse Study and its recommended level of investment is not necessary to achieve compliance with the Ligas Consent Decree.
  • Solution
    • Implement the full Guidehouse recommended level of funding. Illinois being among the worst states in spending for individuals with disabilities is unacceptable. The state should put forth comprehensive efforts and significantly increase investments into community services for individuals with intellectual and developmental disabilities. We shouldn’t aim to only bring Illinois into compliance with the Ligas Consent Decree, but to become a leader in disability services.

Supported Employment

  • Issue
    • Supported Employment programs play a major role in integrating individuals with intellectual and developmental disabilities into society. It benefits the individuals greatly and also allows them to become taxpaying citizens. Integration is a top priority for agencies, but due to inadequate funding agencies have limited means to secure and support employment for individuals with intellectual and developmental disabilities. Clearbrook continues to operate its supported employment program at major deficit because it recognizes how beneficial it is to individuals with disabilities.
    • The staffing crisis continues to diminish the potential impact of employment services. Many individuals who are capable of retaining community employment are waiting for job coaches and other employment support personnel to assist them. Clearbrook continues to be a leader in supported employment, having won the Disability Employment Awareness Award from the Village of Arlington Heights in 2021 and opened a new employment training day program in 2023, but our impact is still limited by the issues impacting employment services statewide.
  • Solution
    • The Guidehouse Study recommends redesigning the Supported Employment Program to include additional support systems with an emphasis on individualized job coaching. The study also recommends improving the reimbursement rates for small group services. This would be of great help to agencies allowing them to grow their supported employment services and help more individuals with developmental disabilities.
    • The Division on Developmental Disabilities (DDD) under the Department of Human Services (DHS) proposed a 5-tier supported employment program
      • Supported Employment Career Assessment
      • Supported Employment Job Finding and Development
      • Supported Employment Job Coaching and Support
      • Level 1 Small Group Employment (1:6 administrator to individual ratio)
      • Level 2 Small Group Employment (1:3 administrator to individual ratio)

CILA Home Maintenance

  • Issue
    • Community Integrated Living Arrangements (CILAs) are homes to many individuals with intellectual and developmental disabilities throughout the state. Clearbrook owns or operates over 50 CILA homes. The cost of maintaining these homes is substantial and is often a significant obstacle for Clearbrook and similar 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 up to 8 residents with disabilities. Fire safety systems alone regularly cost up to $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. 
    • If funding were made available for CILA home modifications, it would make opening more CILA homes for individuals with disabilities much easier for providers. Funding could be used to install the necessary home modifications, ensuring the home is safe and accessible for the residents at a much more manageable cost. Staffing is still the primary obstacle preventing service expansions throughout the state, but the goal is to expand service capacity and support more individuals with intellectual and developmental disabilities, therefore investments must be made into the CILA administrative costs.
  • Solution
    • Increasing the state’s investment into CILA administrative costs would help providers expand CILA services and support more individuals with disabilities. More than 15,000 individuals currently reside on a waiting list to receive services, and many providers are unable to expand their services due to insufficient state investments. Guidehouse recommends changing administrative costs to a percentage of the program costs rather than a fixed dollar amount. This would allow providers some flexibility and enable them to use CILA funds to cover costs more efficiently. Every home is different. Some may require substantial modifications, and some need very little work done to be made accessible. A one-time allotment of up to $15,000 for CILA modifications is simply inefficient, so the state must increase investment into this vital residential program and rethink the funding methodology to account for each CILA home’s individual needs.

House Bill 3704

  • Issue
    • The Prioritization for Urgency of Need for Services (PUNS) list is a database of individuals with intellectual and developmental disabilities in Illinois who are planning for or seeking services. They remain on this waiting list until they are selected based off of their age, whether they are seeking services now or planning for services, and their time on PUNS. Individuals are selected when there is available funding and program vacancies. Many on the PUNS list wait to be selected for services for years. In Illinois the PUNS list exceeds 15,000 individuals.
  • Solution
    • HB 3704 (Ness D-66) would provide a tax credit of $1,500 for each year a taxpayer has a dependent on the PUNS list to assist them in finding temporary alternative support while the individual awaits selection from PUNS.

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, and they languish away stuck in committee. There is currently not a clear focus on disability issues in the General Assembly.
    • Illinois previously had the House Disability Services Committee as recently as 2012, but that committee was disbanded after the 97th General Assembly. The disbanding of this committee makes it seem as though individuals with disabilities are no longer a priority for the General Assembly, yet the plethora of issues facing individuals with disabilities throughout Illinois are as bad or worse as they have ever been.
  • Solution
    • 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.
    • Other states have committees dedicated to handling disability issues. Massachusetts has a joint committee on children, families, and persons with disabilities. Nebraska has a special committee on developmental disabilities, New York has a house committee on people with disabilities and a senate committee on disabilities. Washington has a joint committee on planning for aging and disability issues. Illinois should prioritize disability issues and once again establish a committee for individuals with disabilities.

Early Intervention

  • 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.

    Please contact Advocacy Manager Joe O’Sullivan at (847) 385-5017 or josullivan@clearbrook.org for more information.