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Navigating the Children's Special Needs System

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.

3. Finding A Support Network

Throughout it all, you're going to be so busy becoming an expert on your child's issues that you may neglect your own needs. Don't.

  • Connect with a parent advocate who has been through the process and who can be present for all your meetings with the intervention team. Some EI programs even have parent volunteers on hand who have agreed to do this; in other programs, though, you will have to seek out a buddy on your own.
  • If your child is under 3 and going through the state early-intervention program, you can request parental-support services, like counseling, once your child has an IFSP. It's a little-known benefit, says Dr. Sawyer Cohen, so be sure to ask about it.
  • Find an online community or start one locally through meetup.org for those late-night worries when you can't call your usual pal or the mom on your committee. Connect with other parents by posting a message at parents.com/special-needs-board.
  • Network and get to know other families with children in the program, especially those whose kids are slightly older. These parents can share the stories of success, which goes a long way toward helping you stay motivated. "They might not have all the answers, but they have been in your shoes and can offer a shoulder or an ear, or even set up a playdate," points out Mandi Welbaum.

Crucial Milestones

0 - 6 months: If your baby does not seem to be responding to sound, your doctor should test her hearing.

3 months - 2 years: A lack of eye contact and social interaction (smiling, laughing, babbling) during infancy, or a decline in these behaviors in toddlerhood, are cause for concern. Infants 6 months of age or older who exhibit "head lag" (difficulty maintaining head control when gently pulled from a lying to a seated position) may be at greater risk for autism, say researchers.

 

6 - 12 months: You should expect dramatic progress in motor development -- sitting up, scooting or crawling, pulling up. Not all babies walk at 12 months, but they should be increasingly mobile.

9 months - 2 years: A 9-month-old won't have words, but he should babble and respond to his name and yours. At 1 year, he may only have a few words but know other ways, such as gesturing or pointing, to make you understand what he wants.

By 2: your child should be saying 200 to 300 words and speaking in two- or three-word sentences. "Delays in expressive language usually respond extremely well to intervention," notes Dr. Duby. For parents with any concerns about their child, Easter Seals offers a thorough developmental screening questionnaire at www.easterseals.com/ASQ.

Developmental Checklist

Your child's evaluation will be "multidisciplinary," meaning that a team of testers with different sets of expertise will look at these five areas of your child's development.

Physical (growth, gross and fine motor abilities)
Cognitive (learning and thinking)
Communication (understanding and using words)
Social-emotional (relating to and interacting with others)
Adaptive (self-help skills such as eating and getting dressed)

Making A Stronger Case

Usually the system works and most children who need services get them, notes Rachel Cortese, a licensed speech-language therapist with the Child Mind Institute's Learning and Development Center, in New York City. However, if you feel that your child needs services and the evaluation indicates otherwise, you have the right to challenge that decision at a mediation hearing (also called an impartial hearing).

Another route you can take is to bring in your own experts, either from the beginning or at the mediation stage. Special-needs committees will consider independent evaluations as part of the review, notes Cortese, and an outside expert is often a good idea. This may involve some costs for you, but not always. Check with your state health department, your child's doctor, and your school district to see what other services may be available in your community. And talk to your health-insurance provider to see what's covered.

Originally published in the April 2014 issue of Parents magazine.

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