Young Children with Developmental Delays Struggle Due to Lack of Timely Support, Risking Long-Term Consequences

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Three-year-old Alexander from West Chicago is vibrant—keen on watching Paw Patrol, showing affection to his younger sibling, and engaging in activities wholeheartedly. However, he struggles with significant developmental delays. He can only speak a few words, has poor balance, and fails to communicate his emotions effectively to his preschool teachers.

His mother, Hilda Garcia, got him tested and found that he qualified for five distinct therapies via a U.S. federal program aimed at addressing developmental issues in infants and toddlers. While initially relieved, Garcia’s optimism was short-lived.

The U.S. Early Intervention program, created in 1986 and federally mandated, is grappling with a severe staffing crisis across the country. This has left countless parents in a quandary. They are aware that their children require specialized attention and therapies proven to be effective, yet they find themselves on waiting lists for months to secure these services.

After an exhaustive period of 14 months involving numerous phone calls and relentless research—balancing her employment and childcare responsibilities—Garcia managed to arrange an in-person Early Intervention appointment. Even then, she couldn’t secure all the necessary therapies for Alexander. She emotionally describes the fight to gain access to these services as overwhelming.

“The earlier, the better” is the guiding principle behind the Early Intervention program. According to the U.S. Centers for Disease Control and Prevention, approximately one in six children in the U.S. experiences at least one developmental disability or delay. Under the Individuals with Disabilities Education Act, all states receiving federal funding for Early Intervention are obligated to offer services to eligible children.

However, the shortage of providers is a critical issue in almost all states. Consequently, many children wait months or even years to receive essential care, with some aging out of the program before gaining access to any services. The COVID-19 pandemic exacerbated these staffing shortages, affecting both the willingness of providers to offer in-home services and the propensity of families to seek in-person support.

In Illinois, where Alexander resides, the delays in services have nearly doubled in 2022, according to Start Early, a Chicago-based advocacy organization focused on early childhood development. Waiting lists have burgeoned, despite being technically prohibited, and thousands of service providers have exited the field, reports the Illinois Department of Human Services.

As children reach the age of three, the responsibility for special education transitions from Early Intervention to school districts. These systems, too, are inadequately staffed. Delaying intervention costs valuable developmental time and increases future expenses on special education and other services, explains Sarah Ziemba, an Early Intervention provider in Peoria, Illinois.

Further complicating matters is the issue of social inequity. Families with adequate private insurance can afford to seek therapy outside the Early Intervention program. However, those lacking financial resources face considerable obstacles. Research supports this observation, revealing that children from Asian, Hispanic, and Black communities are less likely to receive Early Intervention services compared to their white non-Hispanic counterparts.

While there are initiatives to address these gaps—such as a 10% pay raise for Early Intervention providers in Illinois and a retention program offering financial incentives—these measures are insufficient to reverse the ongoing exodus of skilled workers from the program.

The need for intervention is pressing, as evidenced by the case of Lindsey Faulkner, a Peoria mother whose young daughter, Aria, showed remarkable progress after receiving timely speech therapy. Aria was diagnosed with autism and, although she commenced speech therapy promptly, she has been on the waitlist for developmental therapy for over a year.

Both providers and parents like Garcia face challenges that go beyond mere scheduling. The low pay and lack of benefits for Early Intervention providers make it financially unsustainable for many to continue in this line of work. For parents, navigating this complex and underfunded system can feel akin to taking on another full-time job.

Garcia, who speaks English but belongs to a predominantly Spanish-speaking community, also highlights the linguistic barriers faced by many parents. While translators are available, their involvement further complicates an already cumbersome process, cutting into the limited time allocated for therapy sessions.

The consequences of these systemic deficiencies are far-reaching. Garcia recalls a recent incident where Alexander was pushed off a playground set by another child. Unable to express his pain adequately, the situation escalated to an emergency room visit where tests confirmed a “significant fall.” Garcia wonders if timely access to Early Intervention therapies would have better equipped Alexander to navigate such situations.

The situation is dire and calls for immediate action, as both providers and families find themselves at a breaking point. A long-term failure to address these challenges will invariably result in children falling further behind, with societal implications that may well be irreversible.

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Author is a member of the Big Big News/Report for America Statehouse News Initiative, supported by the Overdeck Family Foundation for reporting focused on early learning. All content is solely the responsibility of the Associated Press.

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Frequently Asked Questions (FAQs) about Early Intervention program

More about Early Intervention program

• Early Intervention Program Overview
• Individuals with Disabilities Education Act (IDEA)
• Staffing Shortages in Healthcare: A U.S. Overview
• The Impact of COVID-19 on Early Intervention Services
• Socioeconomic and Racial Disparities in Early Childhood Development
• Federal Funding for Early Intervention Programs
• Illinois Early Intervention Program Updates
• Developmental Milestones: Understanding the Importance of Early Intervention
• Professional Attrition in Early Intervention Services
• The Role of Private Insurance in Early Childhood Development Programs