New York State promised millions for kids with developmental delays, but has yet to deliver

ALBANY — New York State officials in April promised a funding boost for early intervention services for more than 73,000 young children with developmental delays and disabilities, but eight months later, the aid remains bogged down in a lengthy approval process.

Providers say the delay is putting a strain on resources and in some cases, it means cutting back on support and therapeutic services for infants and toddlers and their families.

"We’ve got this crazy waiting list of children that are not receiving services when [age] zero to three is the time when we can actually make a structural difference in babies’ and toddlers’ brains," said Winifred Schiff, CEO of the Interagency Council of Developmental Disabilities Agencies Inc., a nonprofit organization with about 167 member agencies that provide services statewide.

Preschool children come in not speaking or some not even walking and the state’s Early Intervention Program can help them to do so, Schiff said. "It can make a difference like no other service can."

Gov. Kathy Hochul in April announced $19.5 million in the state budget for a 5% increase in the reimbursement rate to take effect April 1 for the Early Intervention Program. Of that, $6.1 million is state funding, and the rest is federal funding based on the Medicaid assistance formula, advocates said.

Reimbursement rates are what the provider gets paid for providing the service and depend on the cost and length of service, advocates said.

The budget also included a reimbursement rate increase for the Office for People With Developmental Disabilities, or OPWDD, which coordinates services for approximately 130,000 adults with intellectual disabilities, cerebral palsy, Down syndrome, Autism, Prader-Willi syndrome, and other neurological disorders.

The increase was supposed to be effective July 1, and service providers were notified on Monday that the increased rate was approved and will apply retroactively, Erin Silk, a spokesperson for OPWDD told Newsday on Friday. The rates will soon be available to nonprofit residential and day service providers licensed by the office, and the Department of Health is working "expeditiously" to make them available for review on the state website for providers "as soon as possible," Silk said. 

OPWDD did not respond to a request for comment on the reason for the rate delay.

The delay, however, caused a major issue for providers.

“[F]or providers across the State, the delay in release of these rates leaves us challenged in a few areas: balancing our 2025 budget — being able to plan our services accordingly; staffing our programs — recruiting top talent; covering overall expenses, inclusive of unfunded mandates," said Jozette Prescott, chief program and quality officer for OPWDD services for the Developmental Disabilities Institute, a nonprofit that provides services to the Long Island community. "Essentially the absence of these rates makes it increasingly difficult to manage our finances."

There’s a theme across all the services, from early intervention to school-age to adult programs through OPWDD, Schiff said in an email. "We don’t fund any of those services well enough and it’s a real struggle for both providers and families," she said.

And if more was spent on early intervention services, the state wouldn’t have to spend as much on preschool, school-age and adult services, she said.

Approval process

Both programs have to go through a lengthy approval process, including by the state Department of Health and Division of Budget.

One of the reasons for the delay in the Early Intervention Program funding was an effort by the state to try to find efficiencies in the program first, which resulted in a back and forth between agencies, officials told Newsday.

It’s unclear what caused the delay on the adult program reimbursement rates.

Unlike the adult program, the Early Intervention Program also must go to the federal Centers for Medicare and Medicaid Services for final approval. The health department is in the final stages of submitting the reimbursement rate application for review, department spokesperson Erin Clary said.

Under federal law, if the rate application is submitted by Dec. 31, the providers will only receive the new, higher rate retroactive to Oct. 1, the beginning of the federal quarter. But if the application is submitted after Jan. 1, it would only be retroactive to Jan. 1, the start of the new quarter. 

The submission to the federal agency is "very late," Assemb. Amy Paulin (D-Scarsdale), who chairs the Assembly Health Committee, told Newsday.

"I just am very nervous now with the new administration that some of our applications for increases may not go through," she said, about the incoming Trump Administration. "Hopefully some of these approvals happen before the next administration."

Early intervention

The Early Intervention program helps babies and toddlers develop skills such as walking, talking, learning and feeding, Maria Broadway, spokesperson for the Developmental Disabilities Institute, said in an email.

"Early Intervention (EI) services play a pivotal role in the lives of Long Island’s most vulnerable children," she wrote. "It is a critical window of time in a child’s development, one that is integral to shaping their future."

The federally mandated program, which provides services such as speech and occupational therapy, is free for families that qualify.

The state Early Intervention Program serves 5,155 children in Nassau County and 4,426 in Suffolk County, according to the Department of Health.

The state Department of Health recognizes that the "health care providers and therapists provide critical services every day in their communities," which is why the reimbursement rate increase was included in the budget," Clary said. 

The budget also included an additional 4% boost to send increased aid to rural and underserved communities starting in April 2025. It allocates $500,000 as the state’s share, the rest is federal funding based on the Medicaid assistance formula, advocates said.

Until this year, the state program has had little increase in more than two decades, Schiff said. There are almost 10,000 children on the waiting list, she said.

The COVID-19 pandemic exacerbated the workforce shortage in health care in every area, including early intervention services, Paulin said.

Some providers decided to pay the increased reimbursement rate to help retain staff and eat the cost, expecting it to take effect shortly, said Chris Treiber, chief of children’s services for the Interagency Council of Developmental Disabilities Agencies Inc. "And now they’re out this money. Some are really in big financial jeopardy at this point."

The Developmental Disabilities Institute, based in Smithtown, is one of only a few providers that still offer on-site services, but it’s operating at a loss with a gap that even the 5% increase won’t fill, Broadway wrote. "The underfunding leads to low morale among staff, providers having to close classrooms, and students being denied their right to equitable care and education," she wrote.

Adults services

The OPWDD program coordinates service for adults with intellectual and developmental disabilities through a network of about 500 nonprofit service providers, according to the agency’s website. About 80% of services are provided by private nonprofits, while the remaining 20% is provided by state-run services, according to the website.

The program serves those adults after they’ve graduated from the state education system, and provides them with continued support in their daily lives, said Michael Seereiter, President and CEO of the New York Alliance for Inclusion and Innovation, who has a personal connection to the program through his brother who receives services.

The program helps families keep adults with disabilities living at home; provides assistance for those wishing to live on their own; helps those who want to work, volunteer or partake in other community activities; and helps them access services like clinics and therapeutic support, according to the OPWDD website.

The services are free for the families that qualify.

But because the services are primarily provided through a network of nonprofits, it’s particularly difficult when insurance or other costs of doing business increase, Seereiter said.

And the rate of pay for workers employed by the nonprofits is only a few dollars above minimum wage, making it hard to retain staff, he said.

The reimbursement rate increase isn’t a set amount, it’s a formula-driven process that runs through the state Medicaid system that’s updated every few years and helps meet those increases, Seereiter said.

And the delay meant less services for people such as Seereiter’s brother.

When staff isn’t available, "his quality of life suffers in many, many ways," Seereiter said. It’s hard to get his basic needs met like having assistance going to the grocery store, let alone additional services like attending bowling club or going to the movies, Seereiter said.