Special Needs Kids: When You First Suspect a Problem

Maybe your baby isn’t rolling over. Perhaps your toddler isn’t meeting your eyes or answering simple questions. (My wife always called our son,x, now 7 and diagnosed with autism, “a boy with a difference”.) Unstoppable tantrums, lack of coordination, silence where there should be speech: These signs can chill the heart of a parent who may know little about special needs.

Throughout New York City, there is a universe of agencies to provide services for potential special needs — but an equally large, bewildering maze of agencies, coordinators, and therapists before a kid can get those services.

First, parents should check with their pediatrician about the possibility of an evaluation that confirms, or rules out, the presence of special needs. “Some parents are not that sure that their child has a problem,” says Karen Samet, director of the Brooklyn Early Childhood Direction Center (ECDC), a frequent first stop for parents looking for information on special needs services, or at least an evaluation of their child.

“Maybe some doctor in a clinic who saw their child for 10 minutes says, ‘There’s a speech delay here. Call someone.’ Some of the parents are just following instructions. Some have discussed it with their pediatrician, and some haven’t. A lot of pediatricians seem to also be in the wait-and-see mode. They’re cautious about having evaluations done. But if you have a concern, you have the right to have your child evaluated,” Samet urges.

ECDCs, funded by the New York State Education Department, provide free confidential information and referrals to parents, professionals and agencies about services for young children with diagnosed or suspected special needs. New York City has an ECDC in each borough; children and families referred to the ECDC should reside in the borough, and the child should be younger than age 5.

Says Marilyn Rubinstein, director of Manhattan’s ECDC, “There are lots of services out there. Navigating the system, however, can be confusing to families.”

Adds Samet: “I try to be clear when I talk to parents, try to give all the information I can and have it make sense. It’s a very big system to enter. But we’ll listen. We’ll talk to parents about their options and what’s out there to get started.” ECDCs also provide information about referrals to diagnostic and evaluation services.

“If a parent has a question about their child, they have to find some place to have that question answered,” says Rubinstein, who recommends first talking to the child’s pediatrician about a developmental screening, and perhaps an evaluation — the next step in securing services. Even if the parent has concerns the pediatrician doesn’t share, infants and toddlers are entitled to an evaluation at no cost through a New York State Early Intervention Center, reiterates Rubinstein. Evaluations are provided by agencies approved by the New York State Department of Health, which has a contract with the New York City Early Intervention program (EIP). If you choose to have an evaluation through EIP, a service coordinator will be assigned to help you through the process.

Evaluations are standardized tests to help determine a child’s abilities, and any limits to those abilities. Documentation and diagnosis is critical to further therapy.

The next step is a meeting with a representative of the New York City EIP, your service coordinator, and a representative of the evaluation agency to determine the services your child will need. Early Intervention (EI) is for children younger than 3 years old, and offers a variety of therapies given in the home or in centers. It’s been a boon to the youngest of the special needs population. Notes Helene Craner, associate director of the Manhattan-based Resources for Children With Special Needs, “The world of EI is relatively new. There are older children with disabilities who would have been happy to have had EI at the proper time.” ECDCs and agencies like Craner’s also dispense information about children older than age 3.

Rubinstein and others recommend keeping a detailed notebook of phone contacts, originals of evaluations and other records, and any other paperwork that looks like it might be useful one day. Record the name and title of everyone talked to, the date of the call or correspondence, and the result. “If someone said something to you and three weeks or three months later you want to follow up on that, you’ll want to know who said it,” explains Rubinstein.

“A notebook is a helpful way to see progress, and to check to see if some new issue is emerging,” adds Samet. Qualifying for services after an evaluation and documentation of a need is one thing, but getting the therapist can be another. “The demand for services has possibly outstripped the supply of individuals to provide services,” notes Nina Lubin, program director at Resources for Children with Special needs. “The most common complaint I hear from parents is, ‘I’m authorized to get X, but I’m only getting half of that.’” Therapists are sometimes most available in mid- to late-summer, when some client children may have aged out of EI or preschool therapy programs.

“If a parent has a concern about any of the EI services their child has been referred to and isn’t receiving, there are options to pursue through the system,” says Rubinstein. Start with a call to your local EI office, she suggests.

Again, if you suspect your child has a problem, “don’t wait to get them evaluated,” advises Nina Lublin. “All the research of the past 35 to 40 years shows us that the earlier you refer, evaluate, and determine what the child’s abilities and special needs are, the better off the child will be in terms of social, emotional, and educational development.”

For more information:

• NYC EIP: (800) 577-2229

• National Information Center for Children and Youth With Disabilities: (800) 695-0285, nichcy@aed.org; www.nichcy.org Early Childhood Direction Centers

• Manhattan: (212) 746-6175
• Brooklyn: (718) 437-3794
• Queens: (718) 374-0002, ext. 433
• Bronx: (718) 584-0658
• Staten Island: (718) 390-4737

Parent Information Training Centers • Resources for Children With Special Needs: (212) 677-4650
• Advocates for Children of New York: (212) 947-9779
• Sinergia; (212) 496-1300
• YAI: National Institute for People With Disabilities; (212) 273-6100, www.yai.org
• United Cerebral Palsy of New York City; (212) 979-9700, www.ucpnyc.org
• Association for the Help of Retarded Children (AHRC); (212) 780-2500, www.ahrcnyc.org

JEFF STIMPSON's book, "Alex: The Fathering of a Preemie", from Academy Chicago Publishers (www.academychicago.com), is available at most bookstores and online booksellers.