Thousands of Young New York Children With Disabilities Not Receiving Early Intervention Services
Therapeutic and support services available through New York’s Early Intervention (EI) Program are vital for infants and toddlers with disabilities, but an audit released today by New York State Comptroller Thomas P. DiNapoli found many young children did not receive services or faced delays in care. The audit recommended the New York State Department of Health (DOH) improve its management of the EI program and eliminate barriers to care.
“Failure to provide babies and toddlers with early intervention services misses a critical window of opportunity and increases the risk of significant developmental and learning delays, and the need for more special education services in the future,” DiNapoli said. “The Department of Health needs to address the underlying reasons why children are not receiving the services they are entitled to, why services are often delayed and how access can be improved.”
DOH is tasked with developing a system that ensures children are identified, located and referred to the EI program. The department oversees 57 counties and New York City, which operate the program at the local level. Services are available for children under 3 years of age who have a confirmed disability or established developmental delay, and could include speech pathology or audiology, occupational or physical therapy, psychological services or support services for children and families. Under the law, children must be evaluated for services within 45 days after being referred to the program, receive an individualized plan for services, and begin receiving those services within 30 days, upon parental consent.
From July 2018 through February 2022, approximately 189,000 children with a suspected or confirmed disability were referred to the program. However, records showed that 27,000 (14%) never received an evaluation and 10,000 (5%) were still pending. Of the nearly 152,000 children who were evaluated, 98,000 or 64% were determined eligible to receive services, but about 2,000 (2%) of eligible children never received an individualized plan and another 1,000 were pending. Of the 95,000 children who did receive an individualized plan:
- Nearly 51% or about 48,000 children did not receive all types of the therapeutic services to which they were entitled.
- About 28% or 27,000 children did not receive authorized services within 30 days.
- About 3% or 3,000 children did not receive any of their authorized therapeutic services.
DOH pointed to the absence of parental consent as the cause of many instances of denied or delayed services. Since DOH does not require explanations, case files rarely identified why consent was not given, why a parent withdrew their child from the program, why some children were referred to the program but were not evaluated or why they faced delays in care. Officials in 10 municipalities told auditors that sometimes they were not able to reach a parent or there was a lack of service providers. In some cases, parents couldn’t attend meetings or get to a provider during the day. If DOH required this information to be recorded, it could be used to help reduce disparities and improve outreach efforts.
DiNapoli’s audit also found that delays in evaluations and delivery of services were major issues. If DOH accounted for these delays, then its performance metrics would be significantly worse. For example, if delays attributable to “exceptional family circumstances” were included when calculating timeliness of services in DOH’s 2020 annual report, then just 66%, instead of the reported 90%, of children received services on time.
According to a report from DOH, from July 2017 to June 2020, Black and Hispanic children were less likely to be referred to and evaluated for the EI program compared to white children. Black children were also less likely than white children to receive therapeutic services within 30 days. In addition, auditors identified disparities across the state in the availability of providers and access to services. In Broome County, for example, there were less than three providers for every 100 eligible children, while in Putnam County there were nine. The audit determined DOH must do more to identify and address barriers to equitable access to the program.
The COVID-19 pandemic also created problems for families in accessing services. Some families were not able to use telehealth or found it to be less effective than in-person treatment. Overall, there were significant drops in referral rates (-20%), evaluations (-24%), and eligibility determinations (-19%) from 2019 to 2020.
Officials in 10 counties also cited issues with DOH’s web-based system to manage the EI program. They said reports did not correctly show the number of children being served in their area. Nine municipalities indicated that they developed their own internal systems for administering and managing the program locally due to problems with DOH’s New York State Early Intervention System (NYEIS).
Additionally, local officials said the provider directory was not kept up to date on the NYEIS. As a result, some parents were turned away by providers who no longer were offering services or taking on new clients. The audit found 23% of the about 7,800 service providers listed on NYEIS did not give any services during the audit period.
DiNapoli’s audit recommends DOH:
- Identify why some children are not receiving services or are facing delays in care and develop and implement strategies to improve participation and timely delivery of services.
- Include specific goals, tasks, and objectives on municipal workplans for improving public awareness and outreach.
- Take steps to understand disparities in accessing EI program services and develop an action plan to better deliver equitable access.
- Regularly verify the provider directory is accurate and up to date to ensure it is useful to families.
- Expedite a new web-based system to manage the EI program, which has been delayed multiple times, and ensure that municipalities are prepared to use it.
In response to the audit, DOH indicated that EI is a voluntary program that requires parental consent and relies heavily on municipalities to administer. The department acknowledged COVID-19 created challenges and that provider capacity is a significant factor that affects the timeliness of services. It outlined its current activities to better address disparities and outreach at the local level.