Early Intervention is a federally mandated program that provides therapeutic support to infants and toddlers with developmental delays and disabilities. Early Intervention can be life changing because of how much a child’s brain develops from birth to age 3. At The Children’s Agenda we have heard time and again from parents who were told their children would never walk, talk or care for themselves who are now attending school, playing baseball and helping around the house – all because they received Early Intervention when they needed it.

But the Early Intervention program in New York has been underfunded for decades, leaving children and families in crisis. Today, thousands of children are not receiving services, which means they are less likely to reach their full potential socially, emotionally, and educationally. That has lifelong consequences for the children and their families and also poses a much larger cost burden on state government when more expensive in-school and adult services are needed as a result of missing the Early Intervention window of development.

The Children’s Agenda has reported on the excessively long wait times and causes for a number of years now. Recently, the federal government weighed in as well. On February 29, 2024, the US Department of Education office that monitors Early Intervention programs in every state released a monitoring report for New York. It identified 13 major deficiencies in New York’s Early Intervention program. A repeated theme in the report was that New York is failing to meet its obligations as required by federal law. This is the second government report in a year (the first being from the NYS Comptroller) that has provided independent verification of the problems.

The federal report confirms what parents, service providers and advocates have been saying for years: New York fails to meet its legal obligations to infants and toddlers with developmental delays and disabilities. This is costing children and families tremendously in lost development and is costing New York more in the long run when children do not receive the services they need. The report identifies failure in four fundamental areas:

1. Provision of Early Intervention services
   • New York is not providing Early Intervention services in a timely manner
   • All geographic areas of the state are not being adequately served
   • Service plans do not adequately identify what each child needs
2. Monitoring and improvement
   • New York does not use its data system to identify when children are not being served in a timely manner
   • The state is not verifying that cases of noncompliance are being corrected
3. Fiscal management
   • New York does not have adequate policies and procedures for tracking funding of Early Intervention
   • The state is not ensuring that all resources are being coordinated
   • The policies around paying for services do not reflect actual practice
4. Dispute resolution
   • New York is not appropriately:
     • Handling complaints
     • Providing mediation
     • Ensuring due process
     • Implementing procedural safeguards

At The Children’s Agenda we are most concerned with the failure to provide services in a timely manner due to the lifelong impact that can have on children. The federal report notes what we have been saying for years: the failure to provide services in a timely manner is driven by a statewide provider shortage. That shortage is detailed in our recent policy brief, Rebuilding the Early Intervention Workforce. The data we present as well as the stories we hear over and over again from providers squarely locate the cause of the shortage being the low rate the state pays providers for the services. In 1994, the average base rate for Early Intervention services was $79. Today, it is $69. One Rochester-area service provider reports they have lost 50% of their staff in the past four years due to low state reimbursement rates. The field is full of compelling stories like this one that was shared by a clinical director in a legislative briefing a few months ago:

“Four months ago, I lost an occupational therapist with three years’ experience. She said that rent for an apartment is equal to a mortgage. The housing market is insane and she can’t get a house. She needs a new car and her student loan payments are coming back. So, her answer was to buy a small camper for her and her husband to live in and then park it in different people’s driveways. That, to me, is just mind blowing. She has a master’s degree and she can’t afford to live and work in pediatrics, which is an area she loves. So, she left for a skilled nursing home and she is earning $30,000 more than she could in Early Intervention. Another young OT followed her because who can pass up a $30,000 raise?”

Kids can’t wait any longer for State government to fix this. In 2020, New York enacted a $40 million Covered Lives assessment on private insurance providers that was supposed to bring more funds into the Early Intervention program. Instead of supporting increased reimbursement rates and building the Early Intervention workforce, it was used to supplant existing state funds, resulting in no rate increase. Last year the Assembly and state Senate included an 11% rate increase in their proposed budgets, but it was negotiated away. This year the Governor has proposed a 5% rate increase (with an additional 4% increase for underserved and rural areas), but we recently learned that it will be partially funded through “administrative changes” that will limit access to other services that children need. New York state government is willing to spend $700 million on tax credits for the film industry that have not reaped the projected benefits, but they won’t spend a fraction of that to make sure infants and toddlers with developmental delays and disabilities receive the life-changing services they need.

The legal and moral imperative is clear: kids can’t wait any longer for New York to take bold action that shortens wait times and ensures every infant and toddler receives the services and support they need.

Stephanie Townsend, PhD, is a community psychologist and Communications Director for The Children’s Agenda.