Covering A Special Need Child's Health Care

Tonight I feel like expressing some thoughts on our health care coverage. I am looking forward to seeing Sicko by Michael Moore. There is no other subject, other than children's special needs (check out this amazing blog) not being met in schools...that makes my blood boil.

How much do you think it takes to raise an Autistic child? Click here to find out.

We are very blessed right now to have decent health care insurance. That does not mean that we have not had to fight for coverage on almost every procedure, surgery or testing in one way or another. It would have been impossible to have had my hysterectomy surgery a year ago because I would not have proven yet that I needed it. I would not have been considered sick enough or had enough testing done to prove that I needed the surgery. Does that make any sense at all? I don't think so. I had to get really sick to prove that my hysterectomy would be a necessary surgery. Despite having suffered for years with painful endometriosis, infertility and debilitating back pain. Infertility has never been covered by our insurance. When we looked into IVF we knew we would be paying out of pocket if we decided to get pregnant that way. For us adopting seemed a more sure fire way to eventually have a baby. For us even that got majorly screwed up and adopting cost us way more than IVF would have. Granted, there were no guarantees with IVF. Luckily, we have not had to fight for coverage of this surgery. The same went for Maizie's pyloric stenosis surgery. We had to wait over a month for an x-ray to prove that she indeed had the illness. By that point she was so dehydrated and sick recovery was made even more difficult.

Where Maizie is concerned we have had to battle health insurance every step of the way. When I think back to our struggles to get her coverage for testing, hospital care and medications I feel sick. For those who don't know we used to live in a bigger house, in a better neighborhood. We moved here because our insurance would not cover any of Maizie's medical care. They considered her health issues, including her undiagnosed seizures to be a psychiatric need. Joe's company at the time chose not to pay for psychiatric coverage. As a small company they could not afford this coverage for their employees. Despite the suffering and financial hardship this would cause it's employees the companies stuck to their decision. I can understand the issues on both sides. There are no real good choices for some companies. In time Joe and I racked up major debts paying for medications that were not being covered, doctors visits that were being denied, neurology appointments that were considered unnecessary.

At the time Maizie was having seizures, major insomnia, ongoing rages that lasted for hours and was totally unable to handle bathing, eating or communicating. As parents we were exhausted. No one knew what to do to help Maizie. We went to our church at the time to ask for help covering Maizie's medications and I will never forget the look of disgust we were given when they visited our home and denied us help. Their reasoning....our home was too nice and we did not tithe. We have not been back to that church since or any church affiliated with the Catholic Church. We had supported others in need at that church and we were being denied help in our own time of need.

Anyway, when we sat down to pay the bills we were drowning quickly. Our only option seemed to be for Joe to find another job quickly. He tried but with no luck. We panicked and moved to a low cost house in an inexpensive neighborhood. A few months later Joe found a job with great health insurance. If we had waited a bit longer we may have been able to stay in the house we had.

During this time I vowed to only work on fighting the previous insurance company three days per week. While Maizie was struggling to make it through the day I managed to fit in endless phone calls to the insurance company that usually went no where. I wrote letters too. Nothing seemed to work.

We fought one hospital bill for five years. Eventually we were forced to pay it. It was determined that despite a doctor insisting Maizie be hospitalized the stay was unnecessary according to the insurance company. They even brought in a doctor from the insurance company to examine Maizie without our knowledge. I was furious.

This struggle to pay for medications and testing has gotten easier because of the company Joe works for and the insurance we are able to purchase through it. If Joe lost his job we would be in major trouble quickly. Very quickly. Maizie's seizure medications are expensive, her ongoing visits to her neurologist are expensive. Traveling costs money, not to mention her illness had made it quite impossible for me to retain a job. Luckily, we currently only pay co pays. In the past we would have begged our doctors to let us make minimum payments. Usually they allowed this. In fact, we still owe previous doctors that have seen Maizie money and we do our best to pay them as much as we can.

In the same way I had to get more and more sick before my hysterectomy Maizie had to see doctor after doctor after doctor before our insurance company would pay for major testing, such as the genetic testing she had recently. For the last eight years we struggled to get Maizie the right diagnosis so that she could be treated with the correct medication in the right way. She has been given over fifteen different diagnosis's before we were allowed to move on with the expensive genetic testing. I am convinced that if Maizie was a child that did not have seizures this testing would have been denied her by our insurance company.

The truth is even though we had to scale way down and live a bit "poorer" we are still the lucky ones. When I think of my friends I know a lot of people who have little to no health insurance coverage but make too much money to qualify for government assistance. At least what we owe now has always been a portion of the bill. We sucked up our pride and made changes fast enough rather than going bankrupt or losing our home due to ongoing medical expenses. Granted, not everyone would be in the position to move as we did. Sometimes even scaling down is impossible.

One thing I always think about when I think about Autism and health insurance is the many children out there that are like Maizie and will never really know a "true" diagnosis. What is in a diagnosis? Why do we search endlessly for one? I will have to discuss that in another blog post. Maizie's genetic testing cost over six thousand dollars. She meets all the criteria for high functioning Autism and yet is she really Autistic? She has a genetic disorder. An extra chromosome. I can't help but wonder how many children are on unnecessary drugs like our child has been or are being treated for a disorder they really don't have. I wish more families were able to do genetic testing. Most people will never be able to have their child genetically tested. It is just too expensive. Yet alone most families with children like Maizie are just trying to survive. It takes time to research and money to travel. Most important it takes going to doctor after doctor and fighting numerous fights to convince doctors and insurance companies alike that the testing needs to be done. Look at how long it took for a doctor to acknowledge and treat her seizures....over six years! What if we had given up? She would have major brain damage at this point.

With this new movie coming out I hope peoples eyes are opened to the huge mess of a health care system we have. It is easy not to care about it when you are healthy and your children are healthy. But believe me...it only takes a few months before one illness can send a family into financial strain that is totally overwhelming. For right now our family is truly lucky. But don't be surprised if every financial decision we make from now on is based on our past of having poor coverage. Maizie's health care needs are far from over. I still have not went through with having her heart tested, her abdomen x rays have not been completed, she has teeth that are not moving down and we need to see a specialist to have that taken care of, braces are in her future, her seizures still are not under control, her legs hurt and she is weak more often than she is strong. Maizie's ability to live totally on her own in the future is unlikely. When I think of all this I see huge dollar signs.

I know I am certainly not the only parent struggling financially due to the ongoing health care needs of a child. Even with good coverage we spend hundreds of dollars per month on Maizie's care. I can't imagine not having insurance even though we spend much of my time battling the company. (Currently this is Joe's job, I did the first eight years and now he is doing the next eight.)

If anyone out there has a comment on a similar experience I would love to hear it.