City is Trying to Build a Seamless System for Autistic Kids

Written By Dorothy Siegel

Back in the early 2000s, autistic children age 5-21 in New York City and elsewhere who were capable of grade level academic work were educated almost exclusively in segregated classrooms with other autistic children. Neighborhood public schools did not accept them – local schools didn’t have the resources, knowledge, training or expertise to meet these children’s needs. Research clearly shows that autistic children need to be included with typically developing children in order to reach their full potential.

In 2001, I approached District 15 Superintendent Carmen Farina and asked her “Why not? Why can’t District 15 create a fully inclusive program model to meet the academic, behavioral, social, and communication needs of autistic children?” Her answer, “Let’s form a study group.” So, for the next couple of years I collaborated with Professor Shirley Cohen of Hunter College, an expert in early childhood education for children with autism, and a group of District 15 educators to create a pilot program at PS 32. In 2004, when Carmen became the Deputy Chancellor, she replicated the ASD Nest Program across the city.

Today there are 39 New York City public schools serving over 1,000 autistic students ages 5 – 21, all of whom get the help they need to cope with the world and succeed in life. The earliest Nest cohorts are graduating from high school with Regents diplomas and are going off to college. The Nest Program is a true game-changer for children whose life prospects were previously thought to be grim.

Time to declare victory? Not yet. Why?

As the Nest program was replicated in public school after public school, in both high- and low-income neighborhoods, we noticed that there seemed to be fewer children from low-income families being identified for the program. Where were these missing children, children whose families had fewer resources and thus needed the Nest Program the most?

An obvious answer: Some children with developmental disabilities, including autism, from low-income families are not being identified early enough to receive state-funded early intervention (birth to age 3) and specialized pre-school (ages 4 and 5). Research tells us that, if they don’t get this help, they are not likely to make sufficient progress to be able to benefit from the Nest program at age five.

Why were these children not being identified earlier? My belief is that their families, faced with having to navigate numerous city and state agencies, each one a silo focused on its own mission, fall through the cracks in between the silos.

After a child is born, perhaps in a city-run hospital, they may benefit from the Nurse Family Partnership program run by the city’s Department of Health and Mental Hygiene, or DOHMH. If the family qualifies, they may receive cash assistance through the Human Resources Administration or HRA, as well as a child-care voucher from the city’s Administration for Children’s Services or ACS. An increasing number of families qualify for homeless services through the Department of Homeless Services, overseen now by HRA.

Given the need to sustain a complicated set of relationships with numerous city and state agencies, and given the vagaries of city life in general, stressed out low-income families may not know that their child has a developmental disability or how to find out if they do.

Research studies are quite clear: Early intervention really works. In New York City, if a child is found to have a developmental disability before they reach the age of three, they are eligible for Early Intervention (EI) services. At age three they transition to a special education pre-school program. Finally, at age 5, they arrive at the New York City Department of Education (DOE). The child, having received these critical services, is more likely to be able to benefit from the Nest program.

But, what happens if that child with a developmental disability hasn’t received EI and PreSchool services prior to age five? Unfortunately, such children remain developmentally far behind their peers from middle-income families. The earliest years are absolutely critical to the development of all children with developmental disabilities. Failure to receive research-based interventions in their early years dooms these children to diminished life prospects – at the age of five!

Clearly, the city needs to provide a more integrated and seamless passage for children with developmental disability through the maze of agency silos. Ideally, a single coordinating agency should develop and apply consistent, developmentally appropriate standards across the full publicly-funded early childhood continuum, beginning at birth and continuing into elementary school.

I was surprised and delighted to read the other day that the city is moving to do just that. The city is moving its EarlyLearn program, currently serving 20,000 low-income children, from ACS to the DOE.

Having worked with the DOE for over 30 years, I think that this agency is well suited for this task. My hope and expectation is that more very young low-income autistic children will be identified and then provided with the services they need. Then, when they enter kindergarten, they will be prepared to enter the Nest program and get on track for success in life.

I call this a step in the right direction.

Dorothy Siegel, MPA, is the Project Director of the ASD Nest Support Project of NYU Steinhardt.

This blog originally posted as an Op-Ed for CityViews and is available here.