Navigating the Children's Special Needs System

As a parent of a child with speech and social-emotional delays who's been through the process of early intervention, I can tell you firsthand that finding help doesn't have to be overwhelming or scary. There's plenty of support for your child -- and for you, too.
Writer and son

1. Getting An Evaluation

Where you begin will depend on your child's age. All states have an Early Intervention (EI) program for children ages birth to 3 that is mandated by the Individuals With Disabilities Education Act (IDEA) and is either free or minimal cost. Your child's doctor can make the initial referral, as can a licensed child-care provider, but you also have the legal right to request an evaluation yourself. Contact your state department of health (ask for the early-intervention office) or simply Google "early intervention in" and the name of your state.

When Mandi Welbaum, of Troy, Ohio, took her son Brenden for his 1-year checkup, she says "we said 'no' to an alarming number of questions about normal developmental milestones." Her doctor referred her to the Ohio Help Me Grow program, beginning a process that would lead to Brenden's diagnosis of "global development delay" and weekly occupational, physical, and speech therapies. "My advice is to not be afraid to ask questions, even if you feel stupid," says Welbaum. "Therapists understand that you may be confused and worried."

Once the initial referral has been made, you'll be assigned a service coordinator who will help you understand your rights, choose evaluators, and schedule appointments. It can take no more than 45 days for you to have an Individual Family Services Plan (IFSP) meeting, in which you're told the evaluation results and what services your child will be eligible for.

While this may all feel daunting for you, that's not necessarily the case for your child. Evaluations primarily involve play and activities, and you'll get to decide where you want them to take place -- in your home or at a preschool-like center -- and at what time of day.

If your child is between ages 3 and 5, you will take another path to services: your local public-school system. Even if your child isn't old enough for kindergarten, school districts pick up where the state-sponsored early-intervention programs leave off. Yours will have a preschool special-education department that you can reach through the district's special-education office. While EI evaluations focus on development in the context of daily routines, a school-level evaluation also looks at your child as a student and should include a classroom observation, says Dr. Sawyer Cohen.

2. Qualifying For Services

While each state may have different criteria, a child typically has to exhibit a 12-month delay in one of the five areas of development or a 33 percent delay in one area and a 25 percent delay in each of two other areas in order to qualify for Early Intervention services. Other states use a standardized scoring system and will provide services if your child receives a score of at least 2.0 below the mean in one area or a score of 1.5 below the mean in each of two areas.

To help the therapists get a complete picture of your child, inform them of any issues going on at home that could also be impacting him, such as a recent divorce or a family member's illness, says Dr. Sawyer Cohen. Also disclose relevant family history. The fact that a cousin has autism, say, or an older sibling required early-intervention services puts your child at higher risk.

While the cost of early intervention and services through your school district will be covered, if you decide to seek additional therapy, partnering with the right pediatrician can be a big help. When Tiffany Ellman's twin daughters were evaluated at age 2 and eventually determined to both be on the autism spectrum, the Trevorton, Pennsylvania, mom found a supportive pediatrician who gives her referrals whenever she learns about a new specialist or therapy.

Also, at the preschool level, there may be programs for this age group that offer kids multiple therapies. So if your child doesn't qualify for speech services and you wish that she had, she may get into a preschool program that addresses her physical or occupational delays and still get the benefit of speech services there in the process.

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