Your Turn: Why Increasing Early Intervention Funding is Crucial in Illinois

Jen Crick, President of the Illinois Developmental Therapy Association

As a parent of children who greatly benefited from various therapies throughout their childhoods, I fully understand the importance of a system like Early Intervention (EI) that supports families of young children with delays or disabilities as they navigate through the first three years of their child’s life.  

As a developmental therapist and president of the Illinois Developmental Therapy Association (IDTA), I have seen firsthand the positive outcomes for families and children who receive critical EI services, and I know that it takes dedicated professionals with the expertise and adequate resources to ensure that infants and toddlers with delays or disabilities have the best chance for healthy development.  

My colleagues and I have supported thousands of infants and toddlers through the EI program, and it is amazing how quickly we see progress and how life trajectories change in the months that we are with them. EI helps families to support their infants and toddlers and helps to prevent, mitigate, or eliminate delays making children more prepared for success in school and life.  

National data on child outcomes for children who receive EI show that almost 50% of infants and toddlers who receive EI function at age expectancy when they exit EI in social functioning, knowledge and skills and taking action to meet their needs.

EI is a program provided for under federal (and state) law – Part C of the Individuals with Disabilities Education Act (IDEA) that gives infants and toddlers with or at substantial risk for disabilities and delays and their families the right to receive a range of developmental and therapeutic services.  

Despite this mandate, thousands of children in Illinois are on waiting lists for EI services, causing them to fall further behind during a critical period of development when a child’s brain is rapidly changing. Nearly 3,000 families are currently on waiting lists for the EI services they are legally entitled to receive.  

The percentage of families waiting more than 30 days for their services to begin has more than doubled over the last two years, and data from the Illinois Department of Human Services (IDHS) does not account for the thousands more families waiting for an initial evaluation. The delays in the EI system are at levels previously unseen in the recent history of the program.  

Service delays are tied directly to the program’s ongoing workforce crisis. Despite a long-overdue rate increase in FY24, decades of neglect have left providers without adequate compensation. In fact, the state would need to raise provider reimbursement rates by at least 25% just to account for inflation. Most EI providers, who work as fee-for-service independent contractors and not full-time state staff, must cover their own health insurance and travel costs and are not compensated for missed or canceled appointments.  

These challenges, among others, are leading providers – many of whom have advanced degrees – to leave EI and work instead in hospitals, schools, private practices, or other settings. As providers, we believe in EI and are wholly dedicated to developing relationships with families and supporting them in being their child’s best and foremost advocate.  

So, it’s heartbreaking to be led to choose to leave an industry that needs us so desperately. In fact, many providers can no longer make a living wage in EI and can only continue if they have a significant other with income and benefits. This has resulted in a shrinking workforce, directly affecting families’ access to these critical supports.  

The Illinois General Assembly has an opportunity this year to address the EI program’s stubbornly high service delays and an impending workforce crisis.  

We are urging the legislature to increase funding for the EI program by $40 million in the FY25 budget to provide a 10% rate increase for providers and service coordinators and to respond to increasing demand for the services and other systems improvements. This investment will continue to provide the necessary increases that must be sustained over the next few years until the system is stabilized.  

According to the Illinois Department of Human Services’ Smart Start: Early Intervention plan, an increase in the budget would stabilize our EI program by assisting us in bringing  EI providers back to the field, balancing caseloads, lowering service delays, and demonstrating the administration’s appreciation and support to this vital field.  

We appreciate all the work the Department is doing to do multi-state research, build cost models and launch innovative pilots to address disparities in access to services and improve the EI system, and yet, without any commitment of funding, none of this work can be implemented.  

We encourage all Illinoisans to contact your legislators and demand a $40 million increase to the state’s Early Intervention budget for FY2025.  

We cannot allow infants and toddlers with disabilities and delays and their families to be denied these services that they have a right to receive and that make such a huge difference in their development and long-term health and educational outcomes. The earliest years matter—our babies can’t wait.

Jen Crick is the president of the Illinois Developmental Therapy Association and a Developmental Therapist serving the Northwest Suburbs in Lake and McHenry counties. She has served on several EI committees and workgroups in Illinois including the PN-3 Coalition (now Raising Illinois), a workforce workgroup, and the Early Childhood Quality Alliance Panel.

Check out the above op-ed published in the State-Journal Register on May 17, 2024

Learn more about how you can take action for Early Intervention.

Understanding how these additional funds in the above categories are being allocated by the state to support families with young children is especially important as we head into the City of Chicago’s budget season, work to identify gaps and re-emphasize recommendations for the city’s investment of local funds to best serve the city’s early learning system. 

Read Start Early’s analysis of the state budget to learn about other important legislative measures impacting the state’s early care and education system. 

Here are the specifics: 

• $158.5 million (27.3%) increase for the child care system at Illinois Department of Human Services (IDHS) for Smart Start Workforce Grants, Quality Contracts, apprenticeships and Child Care Assistance Program (CCAP) caseload growth 
• $75 million (11.1%) increase for the Early Childhood Block Grant at Illinois State Board of Education for expansion of Prevention Initiative center-based and home visiting programs, Preschool for All and Preschool for All Expansion programs 
• $6 million (3.8%) increase for the Early Intervention (EI) program at IDHS to accommodate caseload growth, but no additional funding for provider rate increases 
• $5 million (21.8%) increase for evidence-based home visiting programs at IDHS to expand access to services and address compensation improvements 
• $5 million for the ECACE scholarship program, but no additional funding to ensure candidates currently receiving the scholarship can finish their programs 
• $14.2 million in operational funding for the new Illinois Department of Early Childhood 

Record levels of service delays continue to plague the EI system – delays linked to a shrinking workforce. Without annual rate increases, providers will continue to leave the program, meaning more infants and toddlers with disabilities and developmental delays will wait for months to receive the life-changing services they are entitled to by law. 

In addition, nearly 2,500 current ECACE scholarship recipients will need further scholarship support to complete their degrees. The lack of early childhood educators has resulted in programs and classrooms closing – limiting the opportunity for families to locate effective services for their children. 

Several other important measures impacting the early care and education system – and the families and workforce who are a part of it – have been approved by the legislature this session, including: 

• SB1 (Sen. Lightford, Rep. Canty) – authorizes the creation of the Department of Early Childhood 
• HB4959 (Rep. Gabel, Sen. Sims) – the FY 2025 budget implementation bill, which, among other provisions, codifies into law the ECACE scholarship program 
• HB4951 (Rep. Burke, Sen. Villanueva) – a revenue omnibus bill, which, among other provisions, establishes a permanent state Child Tax Credit for families eligible for the Earned Income Tax Credit and have children under age 12 
• HB5142 (Rep. Gabel, Sen. Collins) – requires, among other provisions, private health insurers to cover all pregnancy, postpartum and newborn care services provided by perinatal doulas or licensed certified professional midwives, including home births, home visits and support during labor. Insurance companies would need to cover home visits by board-certified lactation consultants, including the cost of recommended breast pumps, breastfeeding supplies and feeding aids. 
• HB4491 (Rep. Faver Dias, Sen. Johnson) – allows a child care director or qualified early childhood educator to be present during the opening or closing of the child care program 
• SB2675 (Sen. Villivalam, Rep. Croke) – expands eligibility to the Early Childhood Construction Grant (ECCG) program for not-for-profit early childhood providers that rent or lease from another not-for-profit entity

We expect the governor to sign and approve this final budget package and SB1 soon.

This suite of policy changes and funding increases was made possible by the commitment and diligent efforts of advocates across the state. Throughout the spring legislative session, parents, educators and advocates contacted state legislators thousands of times on behalf of Illinois families and those who serve them. Given there is more work ahead to address the critical gaps in funding for EI and ECACE, we and our advocacy partners look forward to working in the coming months to be sure both the administration and General Assembly understand the urgency of these problems. 

Start Early is pleased to introduce our Chicago Policy Agenda for 2024-2027. Chicago is positioned to make great strides toward a higher-quality, more inclusive early care and learning system over the next three years. This policy agenda outlines key levers for achieving such robust systems change.

Awareness of Chicago’s early learning issues among City leadership will be one of those key levers. After advocates in Chicago successfully garnered attention for early learning issues during the 2023 elections, Mayor Johnson outlined goals for early learning in his administration’s transition plan and has since embraced and revived the Every Child Ready Chicago initiative, which was launched under the Lightfoot administration just prior to the COVID-19 pandemic. The recently elected City Council has also seemingly made a renewed commitment to issues impacting Chicago’s young children with the revival of the Education and Child Development Committee, which now holds regular meetings under the leadership of Alderwoman Jeannette Taylor.   

Leadership changes within Chicago Public Schools (CPS) have also resulted in continued commitments to early learning, including furthering the expansion of universal full-day pre-K for every 4-year-old in Chicago. In addition to hiring a new CEO in 2021, CPS is facing an unprecedented expansion of their Board of Education over the next four years that will open opportunities to expand the Board’s expertise and further democratize the range of issues it considers.   

As CPS receives increased funds from the state’s Early Childhood Block Grant under Governor Pritzker’s Smart Start plan, their leadership will need to contend with how to build on the progress that has been made to expand access to pre-K and do so in such a way that preserves and promotes inclusivity within the mixed delivery system of school- and community-based early childhood education that gives families in Chicago the ability to choose the program that works best for their child. Doing so will require partnership with Chicago’s six federal Head Start grant recipients and the broader early childhood provider community in Chicago. Our hope is that this Chicago Policy Agenda will provide guidance on where to focus efforts and resources as the city embarks on this collaborative work.

On April 16, Start Early along with our partners at Child Care For All, COFI, Illinois Action for Children, Latino Policy Forum, Raising Illinois, SEIU, and We, the Village brought nearly 300 advocates down to Springfield to advocate for Illinois’ youngest learners. Advocates shared their perspectives with legislators on the impact that the creation of the Department of Early Childhood and increased funding for ECACE & Early Intervention would have on our early childhood systems. In visits with legislators, advocates also shared Raising Illinois’ Babies Can’t Wait postcards highlighting the struggles & successes Illinois families have had with Early Intervention.

Photo Gallery

Check out photos from Early Childhood Advocacy Day 2024

With just over one month left in this legislative session, we aren’t slowing down our advocacy efforts! Here’s how you can still participate:

• Contact your legislators
• Use our social toolkit to share more about the impact of Smart Start with your personal networks
• Share your Early Intervention story
•  To keep up with the work of the Illinois Policy Team you can also follow along on Twitter: @EarlyEdIL

The FY25 budget proposal includes the following funding proposals:  

• $75 million increase for preschool services and prenatal-to-age 3 programs (11.1% over FY 2024) to create 5,000 new preschool slots and expand the Prevention Initiative (PI) program 
• $5 million increase for evidence-based home visiting programs (21.8% over FY 2024) to serve hundreds of additional families and to increase wages for the incumbent workforce 
• $158.5 million increase for Smart Start Workforce Compensation Grants to replace expiring federal funds and for the Child Care Assistance Program (CCAP) to accommodate caseload growth (27.3% over FY 2024) 
• $6 million increase for the Early Intervention program (3.8% over FY 2024) to accommodate expected caseload growth
  • Start Early and our advocate partners requested $40 million in new funding for the EI program. We strongly urge the Illinois Department of Human Services (IDHS) to increase provider reimbursement rates and wages for service coordinators.  Service delays are largely caused by provider shortages, and rates of delay are higher now than last year. A significant percentage of providers have indicated they would leave the program if additional rate increases were not approved in FY25.  
• $5 million in state funding for the state’s Early Childhood Access Consortium for Equity (ECACE) initiative for scholarships to replace expiring federal funds 
  • Start Early and our advocate partners requested $60 million in new state funding for ECACE to continue the program in its current form. Increased compensation and access to higher education are foundational to addressing early childhood workforce challenges.  

The budget also includes $13.2 million to seed the creation of the Department of Early Childhood. We agree with the administration that, if done well, a consolidated early childhood state agency will improve the experiences for families and programs alike. We look forward to engaging with the administration in the work ahead. 

Start Early is also eager to work with the Illinois General Assembly to approve an FY 2025 budget this spring that includes, at a minimum, the funding proposals laid out today and provides more significant increases for Early Intervention and ECACE scholarships. 

Join Start Early in calling on our state legislature to prioritize our youngest learners today and during this new legislative session. Our babies can’t wait. 

While reading, there are several things to consider, which include: 

• What metrics are most useful and relevant to this topic? While the authors of this report chose specific metrics that they viewed as relevant to UNSS, there are many other data points that were not or could not be included. Additional exploration to understand which resources are most essential for new families, and an analysis weighing these resources accordingly, could lead to greater insights on this topic.  

• What data is missing? Separate from the first point is the issue of data that is unavailable. Some highly relevant data points—such as the maternal mortality rate—cannot be reliably disaggregated for communities with small populations without threatening the quality of the data, and there is little that can be done in such cases.  In other cases, relevant data simply does not exist, or does not exist in a high-quality and reliable format on community or even county levels. For example, maternal morbidity rates are higher than those for maternal mortality and therefore may have fewer challenges to reliability in smaller populations. The Illinois Maternal Health Task Force has significantly improved the state’s understanding of maternal morbidity and mortality in recent years, but finding community-level data is still difficult. Other data points, such as the distribution of midwives or doulas, are also lacking on a smaller scale. Data on infant and toddler programs and services is frequently less readily available than data relating to older children, and addressing this gap would serve not only to support this endeavor, but also to pave the way for future research and programs for the state’s youngest learners.  
• What is the role of community leaders? Apart from improving data on a state-wide level, there is a significant portion of information that cannot be collected by the state, and must be shared by leaders within their communities. This information includes informal and/or temporary resources—such as educational programs, support groups, parenting classes, and other local services—that are essential to new parents and the success of UNSS programs, but which cannot be mapped on a statewide level. Collecting high-level data is not and cannot be a replacement for collaborating with leaders within communities. Furthermore, communities must be involved in conversations about scaling new resources and programs such as UNSS, as local engagement and partnership is essential to building sustainable services. 

This report is shared with the hope that it will serve as a catalyst for additional conversations, not just about UNSS within Illinois, but about the resources available to new and expecting families across the country.