Thursday, January 12, 2012

Another Side of the Fight

- from Christy

So the biggies had been accomplished. We had determined that something was wrong with Josiah's and later Jalen's development. We had gone through several evaluations for both boys. We had received the official diagnosis of Autism for them, and we had set up therapy. At that time, I thought we had everything in line. I had no clue that the battle was really just beginning. You see it's not enough that your child has Autism and that your weeks are spent driving to and from therapy. A HUGE part of being a parent of a child with a disorder or disability is the responsibility to fight for state and federal services.

SOCIAL SECURITY! I will be the first to admit that I am not the sharpest tool in the shed. There are plenty of things that I should know or need to learn more about. Social security was and is one of them. Perhaps it is because I really have only worked part time jobs and I worked those jobs LONG ago. After graduating from high school, I was off to college where I met Jeremy. We were married after my sophomore year, and I was pregnant with our first bundle of joy the last semester of my senior year. We have been growing our family ever since, and I have been a stay at home mama the entire time. Jeremy has always taken care of the finances, and I have never had to concern myself with handling the taxes and such. Enough with the excuses! 

I can remember sitting at the CDSA after Josiah's evaluation with our angel of a service coordinator. She advised Jeremy and I that we needed to consider looking into getting social security income (SSI) and medicaid. I actually said to her that we had really good insurance, and that I didn't believe that would be necessary. Little did I know that MOST insurance companies do not cover medical or therapy costs associated with Autism. Autism is seen as a disorder that is pre-exsisting and habilitative. "The word 'habilitative' has been at the heart of health insurance coverage denials for children with autism. Health insurers typically claim to not cover 'habilitative' care and often deny coverage for behavioral therapies as the care is not 'rehabilitative.' Insurers describe 'habilitative' services as educational or long-term care services, both of which are non-covered services. 'Rehabilitative' services are defined as those used to treat a condition that is a result of an injury or illness and are covered services."* Because Autism is considered a disorder that causes development to be delayed or not to come at all, the development was never there and therefore does not fall under the category of a rehabilitative condition. In layman's terms: the insurance companies don't have to pay! 

You may now be asking the same question that we did: how can we get our children what they need without the help of insurance?  The answer is applying for SSI. If you are approved for social security income, then you automatically receive Medicaid. There is always a catch though. SSI is approved based on household income, and not on whether a child has a disorder. You end up having to choose to make a certain amount in order to stay below the income limit. If you go above the limit, you loose SSI, medicaid, and services. When Jeremy was given a job offer from his last place of employment, he actually had to ask them to reduce the salary they were willing to pay him. AHHH! You see the decision is either make something like $30-50,000 (depending on the number of children in your home) and keep the SSI, medicaid, and services, or find a job where you can make at least $150,000 to afford the medical expenses and services not covered by insurance.

Many states now require insurance companies to cover medical and therapy expenses associated with Autism. North Carolina is not one of those states. Jeremy and I are going to post a link to a letter that one of our blogging friends wrote to plead for NC legislation reform in this area. Debby also gave some great tips for contacting the Senate and House of Representatives. If we all do our part, changes may actually occur. By the way, Debby has a son living with Autism. Her family just lost their SSI, medicaid, and services last week. 

To end this very lengthy post on a bright and hopeful note: we do not have to be fearful. God is not surprised by the multifaceted difficulties of raising children with this disorder. We are confident that He will continue to be faithful. Fighting for services has been a very humbling side of Mama-ing these boys, but what a blessing to be stretched in this way. I Peter 5:6-7, "Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you."

DEBBY'S LETTER (be sure to check out the link at the top for tips on how to help):


I thought you might enjoy some pictures of the kids playing at the park last week. They are growing up WAY to fast!


  1. Great summary. It's long been a source of frustration for me that we don't qualify for help from Social Security, but we don't make enough money to pay for extensive therapies ourselves. We just do the best we can on our own and take help where we can get it. We're on a 2+ year waiting list for county services.

    The real kicker is for a lot of families dealing with autism, one parent can't work full time even if they wanted to, so you don't have the opportunity to bring in more income to pay for those additional therapies. It can be a real Catch 22.

  2. We totally understand your situation, since it is very similar to what we face with Rebekah. In our case, Drew was laid off so we don't have insurance. But, even if we did, Rebekah's medical costs are staggering. I don't think we would be able to pay even if we had decent insurance and a good job! Plus, a lot of insurance companies have a maximum amount that they will pay per person in a lifetime. Usually it's like 1 or 2 million. Yep, we're WAY over that right now! So, we play the balancing game of not making enough money, keeping our assets below the minimum and accepting the SSI and medicaid help. I know each state is different, but if you have any questions, I'd be happy to try to answer them. :)

  3. Great info. I know each state is different. In PA we did not qualify for SSI because Mike makes too much. But Josh did get medicaid. It is given regaurdless of income to children with disabilities. So most every medical expense is covered. Also Pa passed the autism insurance law. The insurance companies have to pay up to $50,000 a year for autism treatments. I feel quite lucky about that but I like mot of you wish we could qualify for the SSI so that the money could be used for specialized treatments like hippotherapy, music therapy etc.

  4. My girlfriend Jen gave me permission to post the comment she left on my facebook page. She has some great insights from the perspective of a single parent raising a child on the spectrum.
    Wonderful post, Christy. You very nicely break everything down in terms that we all can understand! And if I may respectfully add... a single parent with no income (but receiving child support), often, will be over income for SSI (like we are). Child support is counted dollar for dollar (as unearned income)- which carries more weight than "earned income." I don't quite understand the logistics- or why, but I do know that although I am unemployed, my daughter's child support is counted, therefore making us over income. :(

  5. I forgot to add when commenting about Jen's situation that unemployment and child support are considered unearned income. This means that this income counts four times more than earned income. This is how a single unemployed mother can be denied services because of her income being to high. I am so sorry for you Jen and your sweet Koi!

    Edson - Thank you for your insights. I totally agree with it being a Catch 22!

    Nancy and Jen- Thank you for sharing your perspectives. I am thankful that every state is not like NC in this area. We have a lot going for us in terms of research about Autism, but we are very lacking in some ways.


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