Evan and Justin
My name is Lynn Decker, and I have two sons with autism, now 13 and 15, who both received Early Intervention services.
Our firstborn, Evan, arrived in June of 1996 and appeared to be developing not just normally, but beautifully. We referred to him as the “ambassador of joy.” The checklists in “What to Expect” told us all was well—so well that we had another baby on the way.
On February 20, 1998, Evan ran a fever with vomiting. By March 1, his language faded out, he became alternately withdrawn and clingy, and wanted a bottle constantly. We called our pediatrician, and because Evan lost milestones, we got none of the “wait and see” advice that parents heard from doctors in those years. We were referred to the New York City Early Intervention Program to get developmental screening & services.
Through Early Intervention (EI) Evan initially received speech, physical, and occupational therapy and later an intensive program of ABA (applied behavior analysis) therapy. The well-qualified therapists who worked with Evan gave us detailed feedback about his progress and demonstrated tactics that we could use to engage Evan beyond therapy hours.
Today, I can see the continuity in Evan’s personality and temperament with the child he was before he regressed, but for years I struggled with thinking of him as a changeling, as in folktales where the fairies or trolls steal away a child and substitute a look-alike with alien ways. We had to deal simultaneously with grief for the child Evan had been and our immediate task of caring for the distressed and challenging child he had become. I believed for a long time we would find something that could restore the “old” Evan. I cannot begin to conceive how he processed the change in his world.
Because we had learned of the highly genetic character of autism, we enrolled our baby, Justin, in a study at Johns Hopkins that monitored the infant siblings of diagnosed children. We hoped we could just enjoy our baby and focus our therapeutic efforts on Evan. But shortly after Justin’s first birthday, the researchers recommended a full evaluation, and we again called the New York City EI Program to access services for him.
Both of our boys remain non-verbal, and general education has never been within reach for them. But early therapies did prevent further withdrawal for both, as they learned to follow a routine, to imitate, and to behave less inappropriately. As importantly, my husband and I learned how to parent our boys in ways that best met their specific needs.
That may not sound like an impressive result to some, but for us it is enormous. Many of my boys’ EI peers had a more robust response to therapy, so for them concepts like grade-level instruction and graduation have real meaning. For them, it is obvious how much money EI services saved in special education and other services. For my boys, the savings are less dramatic, but are nevertheless present. To us, the most important result of EI is that the therapeutic programming they received has kept them engaged with the world to a fair degree rather than withdrawn into a corner, rocking and humming. EI was essential to this outcome. Without it, my boys would have arrived at preschool in a state that I do not care to imagine.
Today, it may be tougher for families to get effective help. The EI program in New York City has seen a big loss in the number of provider agencies as the service rates have been increased only once in 17 years, and cut in the last two years. This Executive Budget contains a few proposals that will surely worsen the situation.
Commercial insurance companies would have to reimburse providers for covered EI services, which is a great idea in principle. But providers will be expected to negotiate a rate with insurers—something they have no experience with—and to accept a lower negotiated rate as full payment. Furthermore, agencies will be required to exhaust all appeals with carriers before billing for services, creating long payment delays. These new bites into the already eroded rates will cause the provider community to shrink further, leaving kids like mine languishing.
Additionally, the Governor proposes to require that the EI evaluator be from a different agency than the service provider, assuming that evaluators might refer chiefly to their own agency. That is an unnecessary solution to an imaginary problem. By law evaluators may not recommend a provider or the type and frequency of therapy services. Instead, such recommendations are the purview of the county EI official. The best match for families is an agency with expertise in the child’s specific disability and the families’ particular language, and within reasonable proximity to the families’ homes. Realistically, that may often mean a single agency will be the optimal provider of evaluation and service. Parent choice of an appropriate evaluator and provider should prevail over this imagined conflict.
These proposals will hurt rather than help the next family like mine, and I ask you to reject them.
Thank you.