An Important Message about Federal Funding from Acting Commissioner Willow Baer Dear Colleagues and Friends, Many people have raised concerns about the current federal administration’s plans to cut funding for programs and services that New Yorkers rely on and the potential impact for the developmental disabilities’ sector. OPWDD shares your concerns and is closely monitoring these announcements to identify any changes that could affect our programs and services. No changes have occurred yet which will impact funding for OPWDD programs.  While I know that information is circulating fast, you should know that under Governor Hochul’s leadership, New York State is working with the NYS Attorney General to ensure that all monies due to our state are delivered as promised. You may have heard about a freeze on certain federal grants, loans, and aid.  After two days of confusion across the country and several lawsuits, including one led by New York State, an order was issued by the Chief Judge of the District of Rhode Island prohibiting the federal government from interfering with such financial assistance to the States until a hearing can be held. In short, legal efforts to prevent the federal government from freezing funds have been successful so far. The Governor shares our commitment to maintaining quality services for people with developmental disabilities in the state of NY.  We will do our best to keep you updated as we receive information from the federal government. Sincerely, Willow Baer Acting Commissioner

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For people with intellectual and developmental disabilities The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

Dear Friends and Colleagues, 

I’m excited to share some of the exciting initiatives announced earlier today as part of Governor Hochul’s annual State of the State address for 2025 that will impact people with developmental disabilities: 

Closing healthequity gaps–Thecreation of Regional Health Clinics through capital grants awarded by OPWDD will enhance access to health services for people with developmental disabilities. Additionally, theimplementation of new school programs to support students with mental health concerns, improved access to dentalcare, and free SUNY tuition for adults pursuing a career in nursing, will all help close health equity gaps in New York. 

Increasing employmentopportunities– Expanding tax credits for businesses that hire people withdisabilities will build on the State’s work toward making New York an Employment First State for people with disabilities. 

Modernizing research andmemorializing our history– Modernizing and enhancing the capacity of the Institute for Basic Research and reimagining a Center for Learning on the former Willowbrook State School property are huge steps toward recognizing the campus’s historical significance on the developmental disabilities service system in New York and nationwide.

As you know, the annual State of the State kicks off the Executive Budget process and I look forward to working with all of you in addressing and elevating issues important to New Yorkers with developmental disabilities.

Sincerely,

Willow Baer
Acting Commissioner

Only in Newsday Jan 7, 2025, 12:13 PM

By Keshia Clukeykeshia.clukey@newsday.comUpdated December 28, 2024 6:07 pm

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.”

WHAT NEWSDAY FOUND

• A funding boost for early intervention services for more than 73,000 young children with developmental delays and disabilities remains bogged down in a lengthy approval process eight months after the state promised the money.
• Gov. Kathy Hochul in April announced $19.5 million as part of the state budget for a 5% reimbursement rate increase expected to take effect April 1 for the program.
• 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.

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.

Adult 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.

By Keshia Clukey

keshia.clukey@newsday.com