How To Effectively Advocate For Your Special Needs Child

If you have a differently abled child, you will undoubtedly spend a large portion of your days making sure that child gets what she needs. It will be exhausting and seem never-ending. It will feel messy, because it is.

You will run out your cell phone minutes, and your patience, dealing with the insurance company. You will encounter doctors who say things so dumb that you question their medical degrees. A government “official” at the US Embassy where you are trying to get your child’s visa paperwork may question your ability to parent your child.

Do not give up.

Here are a few suggestions for dealing with these trying moments:

Wait before you draw battle lines – Your child’s situation, like him, is unique. You may be dealing with people who are unfamiliar with your child’s diagnosis, treatment, etc… Some people are lazy and uncaring and won’t want to help you because it means more work for them. But other people are simply uneducated or uninformed and therefore will default to a “no” or “we can’t do that” position. These people can, and will help you, you just need to give them the information they need to do it.

You are an expert on your child because you live with him, watch him function daily, watch him overcome and adapt. The stranger on the other end of the line doesn’t. Find a point of reference to explain your situation. For us, it’s almost always encouraging people to Google Nick Vuijcic or watch his Youtube videos. Even though Nick and Ying don’t have the exact physical limitations, we find it’s a great starting point. 

Think bulls eye, not buck shot – You aren’t going for a scattered approach here, you’re aiming for dead center and you want to hit the target every time. You believe your child needs 5 classroom adaptive devices? Make a list and prioritize the needs. When they ask about them at the IEP meeting, start with need #1, explain why it’s needed, where to get it and how much the item will cost.

Learn the lingo -  If the issue with the insurance company is the seat elevation system on your daughter’s wheelchair (and I can assure you, it will be!) and you’re slugging it out with them over said seat elevation system, speak their language.  Know that the assigned billing code for the seat elevation system is E2300. Insurance companies bill and are billed using a standard set of alpha-numeric codes called the Healthcare Procedure Coding Systems Code or HPCSC. You can find the applicable codes on your insurance company’s website, in your policy, or here.   A few more insurance terms to know: EOB (explanation of benefits) and OOP (out-of-pocket).

Look like you mean business -  If you mean business, then look like it. There’s no need to go to an IEP meeting in a 3-piece suit, but know that everyone in the room will, at a minimum, be in business casual. Therefore, you, at a minimum, should be too.

Take it to the top – Sometimes the people helping you simply don’t have the power or knowledge base to get you what you need. In that case, the magic words are, “may I speak to a supervisor, please.” Still not getting what you want? Google the email or telephone numbers for a consumer advocate or the CEO of the company. 

Phone a friend -  It’s hard to stay unemotional and factual when talking about your child. You don’t want to recite that her arm is only 2.5 inches long, you want to say things like, she has deep soulful eyes and blast you, you’re making those beautiful eyes cry.

While your passion for your child propels you, it also can work against you in certain situations. If you find it difficult to articulate your position without getting extremely emotional or that your objectivity is skewed by your zeal, then step back. (Remember the most skilled advocates can see both sides of a situation, thus allowing them to more forcefully argue their position.)

In insurance appeals and IEP meetings, you have the right to appoint someone else to speak on your behalf. If you need to, do this.

You’ll be amazed at the number of doctors, therapists and friends who are willing to get down in the trenches with you. People are willing to get their hands dirty and their hearts bruised if you let them.

You do not walk this road alone.

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Did you hear about the British Airways passenger who bought tweets to recover his father’s lost luggage? Apparently it worked. You can read about it here.