As a parent of a child with autism, sometimes I really feel the weight on our generation to lay the groundwork for future families of autistics. I accept that responsibility and do what I am capable of doing to mend the gaping hole that lies between our children's needs and rights and what our society actually offers them.
But no matter how responsible I feel, I can't help but have those moments (many, in fact) where I allow myself a tiny pity party (often with wine/whine) because I just get tired of fighting. For every.little.thing.
I find myself sometimes resenting those around me who have it so easy, and have to remind myself frequently that a.) everyone carries their own burdens whether I know it or not, and b.) maybe there is a teensy bit of truth in the idea that somebody in the universe thought I might be a little better suited to carry this load than someone else. (insert maniacal laugh here)
For the past six months my family has had a huge weight lifted from our shoulders. A calm like we hadn't known in several years. We were finally able to have ABA (applied behavioral analysis) covered by our insurance company. For those of you out there that have self-insured insurance plans, you know that this is next to impossible to achieve. It took me over two years to do it, and I was ecstatic when I learned that we would be authorized for 25 hours/week at a co-pay of only $15/day.
That calm came to a screeching halt two weeks ago as I was informed by a 'care manager' from our insurance company that the past six months had all been a big oopsie and were authorized and paid for in error. Despite having a piece of paper in my possession that was the most recent 60-day authorization good through the end of November, I was told that no claims would be paid past the day of the phone call. Apparently in the insurance world, documents I would consider binding don't have to be if the insurance company decides the rules need to be changed. This is all most certainly unethical, and I can't help but wonder if it is illegal as well.
What we are left with now is a boy who doesn't understand why his beloved therapist no longer visits him each afternoon after school. A boy whose hyperactivity and agitation have most definitely increased again, along with my own stress and guilt at not being as skilled or patient at keeping him engaged myself. My husband and I are faced with the daunting appeal process that lies ahead; one that will likely take up the next four months (at least) and require $150/hour for the services of the autism advocate we are hiring, not to mention the uncomfortable situation my husband is going to be put in since this will inevitably end up as an investigation on his company by the department of labor.
His company has taken good care of us financially thus far. They have given him a solid job with room for significant growth in a time when many families worry about that sort of thing. And yet, they aren't able to give us what we really need the most: help for our child.
Autism benefits for a company the size of the one my husband works for would cost millions of dollars. I realize the impact this has on a company's bottom line. But I also know just how many millions of dollars my husband brings in for his company...a number that far outweighs what an autism benefit would cost.
There are many large corporations who have collaborated with autism support groups to create such autism packages. These companies have realized that by doing so, they've created a better environment for their employees as well. Productivity levels will increase, not only because the employees loyalty will increase, but because they aren't having to spend countless hours during the workday fighting unpaid insurance claims and researching treatment options that might get paid. These companies have taken a huge step forward that I hope more companies will follow. But they won't do it unless we parents take a stand and let them know just how important it is. And so, as frustrating as it is, we all must do our part in helping this country realize the importance of making treatments for autism like ABA accessible to ALL families. We're going to have an even bigger problem on our hands when these kids reach adulthood if we don't help them as much as we can as children.
Mama Deb writes at This Is My New Normal.