Recently, I was asked to contribute to a magazine article about Hope and Gray. As an afterthought, the magazine editor requested that I give information for a sidebar about being a good advocate for your child.  It got me thinking that this would be a good topic to talk about on its own.

As a therapist, I constantly found myself in a position to advocate for my patients.  On any given day, I could find myself advising patients to report new symptoms to their doctor that they might otherwise think were insignificant; or collaborating with other therapists to decide the best way to tackle a functional problem; or arguing with insurance to cover a piece of equipment that they deemed unnecessary. In my professional life, I was very comfortable speaking up on behalf of my patients.  So, as a mother, I was equally comfortable speaking up on behalf of my son.  I have often said that I cannot imagine the difficulty that parents without a medical background must have when they find out that their child has autism.

Common though it may be, autism remains a mystery.  This is further complicated by the fact that children with autism can vary dramatically in their symptoms, abilities and challenges.  So, unlike other medical diagnoses, when a parent receives and autism diagnosis for their child, there isn’t exactly a guidebook as to what the next best steps are.  In my case, the doctor just gave me a list of therapy centers that I could contact and said she would see us again in six months.  Everything else, I had to figure out on my own.  Even finding my way to the doctor that diagnosed Gray was a self-directed journey.  I can easily see how other parents can take years to finally get to the same place.

Likewise, the tests, treatments and therapies that are recommended all cost lots of money.  Without proper insurance coverage, families can find themselves in deep financial trouble.  It is so important to understand your child’s insurance coverage and the laws that your state has in place to protect families like ours.  In Texas, there is a state law that requires traditionally funded insurance companies to pay for therapies such as PT, OT, Speech and ABA (applied behavioral analysis) without limits to the annual number of visits that might apply to people without an autism diagnosis.  Of course, I have found myself many times calling the insurance company to explain why their processing of my son’s claim is incorrect according to Texas law.  If I had no knowledge of the law, I would just accept the determination that Gray was ineligible for further therapy.  I would have to choose to pay thousands of dollars out of my own pocket or discontinue therapy.

With this in mind, I embraced the opportunity to share my thoughts on advocacy with the magazine editor.  Here is what I gave her:

I believe that all parents of special needs children want to find the best and most helpful services for their kids.  For many people, it can feel overwhelming to tackle the medical, educational and financial barriers that get in the way. It is important to remember that you are the person who knows your child best.  The recommendations of medical professionals, teachers and insurance providers may or may not be appropriate for your child and your family.  Don’t be afraid to ask questions about the reasoning behind recommendations.  Don’t be afraid to disagree.

Here are some of my personal guidelines when assessing services for Gray:

–    Be discerning. Only professionals who are passionate about their career may work with my son.  I want them to love working with children who have autism and I want them to find my son particularly interesting.  I have no time or patience for people who are just working for a paycheck and waiting for the weekend.  My son needs people who are deeply committed to understanding and helping him.  Anything less is a waste of time and money.

–       Always start out friendly.  Most people in the business of helping kids with special needs really do have the best intentions.  If you start out winning people over and appreciate what they have been doing so far, they are more likely to work with you for the best outcome possible.  Try not to create “sides” by being adversarial unless it becomes necessary.

–    Keep a list. I often make lists of questions or wish lists of skills that would improve life for Gray and my family.  It is helpful to have them written down so that they feel real and important.  Then, I can decide who are the best people to share these questions and requests with.

–    Good communication is key. I try my best to keep all of the members of Gray’s treatment and educational team in contact with one another.  Whenever a big transition is coming up, I try to organize meetings where everyone can speak in person.  At a minimum, I will connect everyone by email so that they can share opinions and concerns in a collaborative way.

–    Know your rights in the school system.  Under federal law, all children have a right to a free and APPROPRIATE public education.  It is important to make sure that the education plan for your child is appropriate and adequate for their needs and will maximize their abilities to grow and learn.  Don’t be afraid to ask for more than they offer.  The district’s job is to keep costs down.  Your job is to get the best education possible for your child.

–    Know your rights with insurance.  In the state of Texas, children with autism have special protections under House Bill 1919 that keep insurance companies from limiting services like behavioral therapy, speech therapy and occupational therapy.  It is important to know if your insurance company must comply under the laws.  Don’t expect the person processing your claims to know the laws. They often don’t.  Mistakes in claim processing are common.  Don’t hesitate to ask for a supervisor.

–    Go with your gut.  If you know that the services your child receives are inadequate, speak up.  If there is something more you would like to see in your child’s program, you are probably right.  No one else is going to advocate for your child with the same passion that you feel.  Believe in your child’s future and fight for it.

One Comment

  1. Reply
    Libby January 24, 2014

    wonderfully worded & well written article – would make an excellent book for other parents.

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