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The Individuals with Disabilities Education Act (IDEA) is a federal law that protects children age 0-21 with disabilities and provides that they are guaranteed a free and appropriate public education (FAPE). The purpose is to protect students and guarantee that they are educated in their least restrictive environment. Under Part C, this means the natural environment, including the home, daycare setting, playground, or wherever the child would naturally be in their daily routines.  Parents are also included in every decision made about their child.

Early Intervention

Part C of IDEA governs Early Intervention. Early Intervention Is a range of services aimed to help kids, age birth-3 years, who have a noticeable delay in any of the 6 areas assessed, these areas are, physical, social-emotional, speech and language, cognitive, fine motor, and adaptive development.  Early intervention services can also be afforded to a child who has a qualifying medical condition such as Downs Syndrome or a genetic condition. There are other reasons such as being born to a mother who is under 15 that will qualify a child for Early Intervention services. [ ] Even though it is federally mandated, each state has its own rules for which children are eligible and how children are found. In Illinois, children can be referred to Early Intervention by their parents or their doctor and sometimes even by the hospital where they are born in the cases of qualifying medical diagnoses.

Does my child qualify?

In order to find out if your child qualifies for EI, you should call your local childfind office. This will start the evaluation process.  Once you make that initial call, a Service coordinator will start the intake process which consists of taking down all of your concerns and demographics. Then she will find an initial evaluator team which will consist of a Speech and Language pathologist, a Developmental therapist, a Physical therapist, and an Occupational therapist.  This initial evaluation is free, as is the Individual Family Service Plan (IFSP) meeting. You are always a participant in your child’s evaluation and IFSP meetings, as the parents you know your child the best.  At the initial evaluation, the team members will play with your child and ask you questions about their daily routines and any concerns you have. While they are doing this, they will be assisting how your child functions using their assessment tools. At the meeting, they will tell you how your child functions compared to their same aged peers. If you child is determined to have a qualifying delay, or your child has a qualifying medical diagnosis, or you (as the parent) suffer from a mental illness or are under the age of 15, your child will qualify for the Early Intervention program.

Qualifying for EI

What does it mean to qualify for Early Intervention? We will go in to what each team member does at a later date. When you qualify, your therapy team will either work with your child in their natural environment (such as your home, a daycare or a relative’s home) or they will work with your child in a therapy center (which could be at the referring hospital). They will work on a variety of skills like learning to use expressive language to make requests. It could mean learning to walk to be able to functionally move or even to learn to play. There are many ways Early Intervention can help your baby and toddler and the sooner you start, the farther they can go!

-Written by Stacy Hillenburg (parent of transplant recipient and Early Intervention Specialist)

You might think that having a child who has had a transplant would be an automatic qualifier for Early Intervention (EI). Sadly that would be a wrong assumption. Transplant is not one of the automatic qualifying diagnoses, yet. Hopefully in the future it will be.

In the meantime, the child still has to go through the evaluation process to qualify like all other children. This may be made a little easier if your child is a baby and is receiving services in the hospital pre-transplant and the pediatrician, or the transplant team can make the case for why services need to be continued, but again, it does not mean that the services will definitely be continued when the child goes in to the EI system. This should not dissuade you from going to your local Child and Family Connections (CFC) office to ask for an evaluation. The evaluation and the Individual Family Service Plan meeting is always free.

Qualifying Delays

When your child has undergone transplant or is pre-transplant, there are a lot of different medications that they are on, as well as the possibility that they are on a ventilator, as well as needing to be bedridden much of the time. Due to these reasons, they may lose muscle tone, they may be at a critical time (in the case of babies) when speech is forming and they are on the ventilator and cannot use expressive language, this can cause a delay. In the case of children that are waiting on a heart transplant and are sedated, they are losing critical times that they should be learning how to be functionally playing with toys, learning expressive language, learning how to roll over, sit up and eventually crawl. All of this can lead to delays once they do get their lifesaving gift.

How EI can help

This is where the EI team comes in. Once the child has been discharged from the hospital, or sometimes after they have been lifted from isolation precautions in the hospital, the therapists can help the family members with helping your child regain those skills. A skilled speech and language pathologist can teach you how to safely help your child learn how to either bottle feed or nurse again if they are having trouble due to being on a nasogastric feeding tube (NG tube) for an extended period while waiting for their transplant. Or a physical therapist can come in and teach you how to help your child learn how to kick their legs again to get started on some movement and regain some muscles in their legs. These are essential skills that they may have lost due to needing to fight for their lives. When a child is fighting for their life waiting for a transplant, the necessary things like breathing, eating and sleeping are what takes precedence. Things like learning to talk lag behind breathing and need to be learned, or relearned at a later time.

Talk to Your Therapists

There are some things you will need to discuss with your therapists when they come into your home. Your therapist should already have your file and should be aware that your child is immunosuppressed and has had a transplant. But, it is always a good idea to talk to the therapist(s) first and remind them that if they are sick, even with a cold, you will need to have them reschedule. If your child even gets a cold, they could end up in the hospital. Some therapists bring their own bags of toys to play with your child with to help them learn. It helps to facilitate play with the child. You may or may not be comfortable with this since that bag of toys will travel to other children’s houses that that therapist sees. It is ok to ask the therapist to either use your toys that you have at home to play with, or alternately, to use wipes you provide to sanitize her toys before playing with your child. You can also request the therapist to take off his or her shoes before entering your home and to wash hands before playing with your child. These are all common requests and the therapists are trained to expect these discussions by their professional organizations. If your therapist is unwilling to work with these requests, it is well within your right to ask for a new therapist from your Service Coordinator (SC). This is your child’s health at risk. Washing your child’s hands after each session is also good practice to help prevent any illness.  We encourage that you discuss with the therapist your child’s medical needs and the fact that you may need to call them at the drop of a hat for an emergency to cancel. Many therapists do have cancellation policies and you will want them to understand that while you are respectful of their policies that it is possible that your child can get sick and within an hour need to be in an emergency room. We value our therapist’s time greatly, however, sometimes this is unavoidable in the case of a transplant child on heavy immunosuppressants.  Most therapists are compassionate and happy to comply.

All in all, if your child qualifies for EI, it is better to get started as soon as possible. It has been shown the sooner children get started with services, the better the outcome.

-Written by Stacy Hillenburg (parent of transplant recipient and Early Intervention Specialist)

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