Our View: Early Victory Helps Build Momentum for Kids Can’t Wait Initiative

By Monica Brown, Program Officer
and Pete Nabozny, Director of Policy, The Children’s Agenda



For more than two decades, New York State’s inequitable and inadequate reimbursement rates for vital early intervention developmental services haven’t just been stagnant. They have actually decreased. In fact, early intervention reimbursement rates were higher in the early 1990s than they are today.

The result is that there are areas throughout our state and region where children in the crucial first three years of life are screened for developmental disabilities or delays, but do not have timely access to developmental services that could address their needs.

So we are thrilled that the Kids Can’t Wait initiative, led by The Children’s Agenda and supported by the Health Foundation, has already scored its first modest, but significant, legislative victory: a 5 percent increase in reimbursement rates for early intervention providers of Occupational Therapy, Physical Therapy, and Speech Therapy.

The increase, included in the 2019-20 New York State budget passed by the legislature and signed into law by Gov. Andrew Cuomo, marked the first increase in reimbursement rates for certain early intervention services in 15 years. And it gives the Kids Can’t Wait initiative important early momentum to build on over the next three years.

Building an Effective Advocacy Campaign

The legislature’s decision to approve the long-overdue increase didn’t just happen.

When the Health Foundation’s board approved a three-year, $154,000 grant last year, becoming the first foundation to join the Kids Can’t Wait initiative, we understood that change would not happen overnight. The ultimate goal of the three-year initiative is to ensure that every child in New York State who needs developmental services can receive them.

Much of the Health Foundation’s funding for Kids Can’t Wait supports a dedicated staff position at The Children’s Agenda to spearhead the initiative’s coalition-building efforts. Kristen Rogers, who has a rich background in early childhood programs, was hired as Advocacy Coordinator, and in her first months has already made great strides toward building a broad-based, geographically and racially diverse coalition of parents, providers, medical groups, and faith communities to advocate for real policy change.

As a result of meetings with providers, parents, and other children’s advocates, the initiative built an email list of nearly 1,000 people specifically focused on early intervention and preschool special education in western and central New York, as well as the Finger Lakes region. That list proved to be a valuable tool in the grassroots advocacy efforts that won the reimbursement rate increase.

The Children’s Agenda also partnered with Advocates for Children of New York, Children’s Defense Fund, Citizens Committee for Children of New York, and the Schuyler Center for Analysis and Advocacy to educate lawmakers about the growing shortage of early intervention services throughout New York State, and the critical need to raise reimbursement rates for those services.

In addition to email blasts, social media and The Children’s Agenda’s Interfaith Collaborative played key roles in raising awareness of the issue. More than 50 faith communities collectively gathered 2,179 hand-written letters urging Gov. Cuomo and the New York State Commissioner of the Department of Health to take action to address the shortages that have led to long waiting lists for desperately needed early intervention services.

In the 16 counties served by the Health Foundation in western and central New York, for example, nearly 1,000 children spent more than 30 days waiting for access to critical services after being identified as exhibiting significant developmental delays in 2016. And scientific evidence and experience make it clear that not getting timely services for developmental disabilities and delays early in life can have harmful consequences that last a lifetime.

What’s Next?

The stars seem to be aligning in New York State to finally make significant improvements to early intervention and preschool special education services. Recognizing how critical the first three years are to a child’s development, the New York State Department of Health’s First 1,000 Days on Medicaid initiative is focused on ensuring that New York´s Medicaid program is working with health, education, and other system stakeholders to maximize outcomes and deliver results for the children Medicaid serves. And that helps raise awareness of early childhood development issues among lawmakers and policymakers in Albany.

While the initial legislative victory on early intervention reimbursement rates is encouraging, there is still a lot of work to be done.

The Kids Can’t Wait initiative understands that rural areas of New York State—such as our region in western and central New York—face different challenges than urban centers, especially related to workforce issues. The initiative has been collecting information and plans to release a policy brief in September examining wait lists and provider shortages in the 16 counties the Health Foundation serves in western and central New York.

This advocacy work is critical because, quite literally, Kids Can’t Wait. That’s especially true of young children who need early intervention support services for hearing, speech, and vision, as well as occupational and physical therapy.

We’re grateful for the progress our grantee and partner The Children’s Agenda has already achieved. And we look forward to continuing our work with them so that one day in the near future, kids don’t have to wait for the services they need.