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Developmentally Delayed Toddlers Could Face New Hurdle in Getting Services

By Julie Shapiro | October 23, 2012 6:53am

NEW YORK — Children with developmental delays could soon face a new obstacle to getting the services they need.

A major change to the state's Early Intervention program, which provides free therapies to toddlers with autism, speech delays and other issues, would bar kids from receiving services from the same center that initially evaluated them.

The state's goal is to prevent a conflict of interest, in which therapy centers could benefit from recommending unnecessary treatments, according to documents.

But advocates and parents worry that the change will make it harder for families to find a service provider — especially if they don't speak English or have a child with a relatively rare disability, like blindness or deafness.

"The broad restrictions in the proposed regulations would punish children, making it less likely that children and families will receive services that meet their unique needs in a timely manner," Randi Levine, staff attorney at Advocates for Children, said in a letter to the state Health Department. 

For example, Levine said parents of a deaf child would likely want their child evaluated at a center that specializes in helping kids who are hearing impaired.

But that center may also be the only one in the area that offers Early Intervention therapies for deaf children — which means the family would have to either travel farther or ask the state to make an exception to the new rule, Levine said.

The proposed change is awaiting final approval at the Health Department and is scheduled to go into effect on Dec. 1.

It would have a particularly big impact on New York City, where state figures show more than 90 percent of kids who receive Early Intervention services get the therapies from the same organization that evaluated them.

Yilsi Pichardo-Correa, whose 4-year-old daughter Mackenzie received Early Intervention services as a toddler, said it would have been hard for her to find separate places for Mackenzie to get evaluated and to receive services.

A local hospital recommended that Pichardo-Correa take Mackenzie for an evaluation at Hand In Hand Development, a therapy center on the Lower East Side where Mackenzie, who did not speak and did not recognize her own name, was diagnosed with autism.

The staff at Hand In Hand was so friendly and informative during the stressful evaluation process that Pichardo-Correa would not have wanted to go anywhere else for services — and as a working mother, she didn't have time to research other programs.

"I realize how lucky we were to work with one agency," Pichardo-Correa said. "Everything we needed was provided for in one agency."

Mackenzie has since graduated from Early Intervention and is now thriving in preschool, where she still receives some special education services but is catching up to her peers academically and socially, her mother said.

Along with parents of developmentally delayed kids, therapists are also speaking out against the proposed Early Intervention change.

Leslie Grubler, founding director of United New York Early Intervention and Special Education Providers With Parents as Partners, said therapists connect with children during the evaluation and like to follow them all the way through treatment, to see their progress.

"Why does the [Department of Health] want to change this procedure when in fact it will only end up further burdening our families and introducing a barrier to care?" Grubler wrote in comments to the state.

"It is equivalent to an optometrist working in [an] optician’s store to test a customer’s eyesight and then send[ing] them down the road for glasses."

Grubler praised the Health Department's goal of rooting out fraud, but she said the state ought to find a way of doing so that doesn't have such a big effect on families and therapists, who are working well together under the current system.

"There are other ways the state can come up with a better document that honors the good work providers do and [punishes] the bad work that's being done," Grubler said in a phone interview.

One possibility is for the state to mine data from a recently installed Early Intervention computer system to uncover unscrupulous providers who are over-prescribing services, Grubler said.

If the Health Department moves forward with the proposed change, it would only affect children that are evaluated for early intervention after Dec. 1, state officials said in documents.

The Health Department did not immediately return a call for comment.