Every child deserves a good start in life. For parents and guardians of children with disabilities, it is particularly important to connect with the services and resources that enable their children to have just that. The New York State Early Intervention Program helps families find the services to foster children’s physical, social, emotional and cognitive development.
Congress created the national Early Intervention program in 1986 under the Individuals with Disabilities Education Act, or IDEA. Through state and county agencies, children under age 3 with special needs can be evaluated and connected with services through approved providers.
Amy Pilacky, early intervention program coordinator for Onondaga County, says her staff—which includes two additional supervisors and 11 service coordinators (along with 16 coordinators contracted through other local agencies)—handles referrals in writing from physicians, or by phone from parents. The office receives about 1,300 referrals each year.
Some children are recommended shortly after birth, usually for diagnosed conditions such as hearing impairments, Down syndrome or spina bifida.
These children are generally referred to early intervention services through their physicians. But any county resident under age 3 with a medical, cognitive, communication or developmental delay that has been measured by qualified clinical experts can be evaluated for services. Multidisciplinary evaluations are scheduled for children who demonstrate clear developmental or physical delays.
“If somebody calls and says, ‘I want to see if my child is not on target. . . ’ well, that’s not what we do,” Pilacky says.
Family members can be present for all aspects of the evaluation, and all information collected is confidential.
Once eligible, parents work with early intervention staff to establish an individualized family service plan, or IFSP. This is a written document outlining what services the child is entitled to, and what goals—or desired outcomes—should be met. This document is specific, describing where and how often the child should receive services and who will provide them. The plan is reviewed after six months, and then evaluated each year. Services can be added, changed or stopped as needs change.
The list of services that may be included in a child’s IFSP can include: assistive technology, hearing aids, training and counseling for family members, coverage of medical diagnostic procedures, nursing care, nutrition services, occupational and physical therapy, psychological care, coordination of services, social work services, vision assistance, care instruction, health care related to early intervention services, and transportation to and from services.
Parents can accept or reject any of the early intervention office’s recommendations. The goal is to get children started in their intervention programs within 45 days of referral which, Pilacky admits, is challenging. Service coordinators are typically juggling at least 35 cases at any one time, and families have their own time demands.
Glenda Criss is a regional coordinator for Parent to Parent of New York State, a support organization. She says the county does a good job of connecting parents and services in Central New York. But the process can be daunting at first.
“Parents often want to know the laws and their rights,” says Criss, responding via email. “They want to learn how the system works.”
For parents, the process means more paperwork and more self-education. “Parents are often also busy learning about their child’s diagnosis,” says Criss. “They want to know what they can do to assist their child and how to access the services that would help.”
Criss says many of the questions she gets are about access. Many variables go into formulating an effective service plan. Talking with other parents who have used need-specific services is one way to obtain feedback. Criss says all Parent to Parent of New York State employees have a child or close family member who has a disability.
“Oftentimes, other parents are able to also help with strategies or connections, which can benefit your child and your family,” she says.
Pilacky says the process of formulating an individual plan is purposefully family-driven. “It’s written in very straightforward terms. We take the goals right from the child’s parents, and that’s what goes into the plan. It’s not technical jargon.”
Criss, mother of two young children—one with special needs—says one of the most important results of a successful collaboration is a solid goal for services.
“As a parent, I felt this was quite difficult,” she says. “I didn’t know what I wanted for my child, other than to have what other ‘typically developing’ children have.”
Pilacky says her office helps parents develop the skills to advocate for their children later on, when the family no longer has the support of a service coordinator, and services are administered through their local school districts.
“Parents are their children’s first and best teachers,” Pilacky says. “Meeting the families where they’re at is key. And sometimes, that may mean they are just not ready for early intervention yet. And that is a valid choice.”
“At the end of the day, why are we here? We’re here to help the children and families of Onondaga County,” she says.
For more information, contact the Onondaga County Early Intervention Program at 435-3230 or http://www.ongov.net/health/EI.html. To learn more about the local branch of Parent to Parent of NYS, visit www.parenttoparentnys.org; contact Glenda Criss at [email protected]; or call 478-1462, Ext. 322, or (800) 305-8815.