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Critical Need for Investment in Babies and Toddlers with Disabilities and Delays

In this blog post, the first in a series on Governor Pritzker’s proposed Smart Start Illinois initiative, Policy Specialist Zareen Kamal discusses the current challenges facing Early Intervention.

Zareen Kamal April 3, 2023
  • Policy and Systems
  • Blog

Illinois Governor JB Pritzker’s proposed Smart Start Illinois initiative calls for a historic investment of $40 million for the Early Intervention (EI) program in FY 24 to increase provider reimbursement rates, address service coordination challenges and accommodate growing caseloads.

Illinois’ EI program provides a range of critical family-centered developmental and social-emotional services, including speech and language, occupational and physical therapies and social work services to nearly 27,000 infants and toddlers with developmental delays, disabilities or certain medical conditions across the state to ensure they have the best chance for healthy development. EI services have been shown to improve developmental outcomes for young children, support families to better meet their child’s developmental needs from an early age and reduce future educational costs to our communities and the state by minimizing the need for special education services. Nearly half of children who participated in Early Intervention are functioning within age expectations by pre-K, and of those who exit functioning below age expected levels, 75% substantially increased their rate of growth by pre-K.

Research shows that the first three years are a critical time to intervene because it is when a child’s developing brain is most capable of change, and we know that EI services are most effective when provided earlier in life. Despite this, infants and toddlers with delays and disabilities and their families are currently experiencing historically high service delays and barriers to accessing the Early Intervention system at every step of the process. This includes thousands of families waiting to complete the intake/evaluation and Individualized Family Service Plan (IFSP) development process, and many more waiting to receive services after their IFSPs are created as waitlists for services have nearly doubled from FY 22 to FY 23.

Without access to the EI services they are legally entitled to, infants and toddlers with delays and disabilities are falling through the cracks each day and many age out of EI while still waiting for services to be initiated. There has been a historic groundswell of advocacy among families and the EI provider community through grassroots organizing, with thousands of petition signatures collected and letters sent to legislators, and over a hundred postcards from families sharing their experiences. As one parent shared, “My son is currently waiting for services to start. He isn’t able to communicate with us. He isn’t able to tell us when he is hungry, thirsty or in pain. It’s very frustrating for him.”

The challenges families are experiencing with accessing services are primarily due to the ongoing EI workforce crisis. Most Illinois providers, who largely work as fee-for-service independent contractors, must cover their own health insurance and travel costs—both of which are increasing—and are not compensated for missed or canceled appointments, leading to inconsistent income for providers. As a result, EI providers, many of whom have advanced degrees, are choosing to leave EI and work instead in hospitals, schools, private practice or other settings with better benefits and higher pay. Severely lagging reimbursement rates make it difficult to keep up with cost-of-living increases, and EI providers have only received three nominal reimbursement rate increases in nearly two decades. In addition to the provider shortage, high caseloads and low compensation for service coordinators at the 25 Child and Family Connections (CFC) offices across the state have led to high turnover and vacancies, having a substantial impact on families trying to get into the EI system.

While we applaud the Governor’s promise of historic funds and particular attention to Early Intervention, we know that this is only the start of the critical long-term investment needed to maintain the system and to truly recruit and retain the EI workforce. Without immediate action to address the workforce challenges, more personnel will leave the system entirely, causing further harm to children and families. We urge the Illinois General Assembly to approve a FY 24 budget this spring that includes, at a minimum, the funding proposals laid out by the Governor and to advocate for additional improvements to the system. We couldn’t agree more that the time to act is now—babies cannot wait.

This blog post is the first in a series outlining the Early Childhood components of Governor Pritzker’s Smart Start Illinois initiative, a proposed multi-year investment in our state’s Early Intervention, Child Care, Home Visiting, and Pre-K systems.

About the Author

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Zareen Kamal

Policy Specialist, Illinois Policy

Zareen Kamal is a policy specialist at Start Early, where she supports the work of statewide policymaking committees related to the development of comprehensive early childhood systems and the Illinois Policy Team’s priorities for children with disabilities.

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More From This Series

This blog series outlines the Early Childhood components of Governor Pritzker’s Smart Start Illinois initiative, a proposed multi-year investment in our state’s Early Intervention, Child Care, Home Visiting, and Pre-K systems.