I hesitate to even write this. I hesitate to even begin. I’m not one to post on politics. I choose more often to focus on the less controversial topics that we deal with as a special needs family. My hesitation is also based on me finding myself trying really hard not to judge based on political views. I don’t want to be judged for mine.
But the truth is I am struggling. In large part, we write this blog to serve as a record of our journey with Grace. I forget. I move from one thing to the next and details get foggy. At this time, I can’t ignore the weight of the outcomes of state and national elections on Grace or our family. It’s worth including here as part of the story.
If I boil it down to what I think might be the root of the struggle it’s the possibility that the affordable care act could be repealed and more specifically that insurance companies could again elect not to cover someone with a pre-existing condition.
When Grace was born we made all the calls and filled out all the paperwork to get her covered by my health insurance company. When Grace was 15 days old we got life insurance for her. She was diagnosed at around 5 months of age.
The life insurance agent has told us in the past we were smart to get the insurance when we did if we had waited until after she was diagnosed her policy would have been denied.
When she was diagnosed there was no such thing as the Affordable Care Act. That’s when pre-existing conditions became part of our vocabulary. We looked at changing insurance at one point but because of her diagnosis, Grace wouldn’t have been covered. Do you remember those stories about families who went bankrupt and were homeless because they were caring for the medical needs of someone they loved? Those stories have haunted me. The very first medication we gave Grace cost thousands of dollars. A month’s supply of the medication was more than I paid for a brand new car.
Grace is expensive. There is no getting around it. She’s also evolving, growing up. Her needs will change. It’s not just epilepsy we are dealing with. Sure that might be the first thing we say but she has more than 10 doctors. She receives physical therapy, occupational therapy, and speech therapy privately. Yes, she can get those things at school, but in reality what we get are consults from those professionals, not the intense work we are able to get through private therapy services.
Insurance makes it possible for her to have those therapies. Those therapies have helped her walk, made her stronger, addressed sensory defensiveness, allowed her to find a means of communication.
Insurance also means we can take her out of state to doctors who can care for her. Often, even living in the Des Moines area, Grace’s needs require a level of specialty not available here.
Insurance pays for the supplies she needs. Boxes of supplies show up at our home on a regular basis.
There’s also a wheelchair, braces, her talker, etc.
Yes, there’s Medicaid, but it has its limits. It’s also under fire.
Neither pays for many things she needs. Neither pays for some of her meds. Many of the special needs adaptations that she needs or that add to her quality of life are incredibly pricey. We pay for them. We also pay for the trips out of state, for gas, hotels, food. It quickly adds up.
So my fear is that we would somehow lose insurance for her and have no means to get it back.
I wake up from dreams about losing our home because we had to care for her.
I wake up wondering what opportunities we would have to withhold from Graham because we are taking care of Grace.
I wake up feeling trapped in my job with no way of leaving because I have to care for Grace.
I also wake up knowing that there is no choice in the matter – we have to care for Grace. She’s ours. She has needs that we have to meet. However, we can. I feel the weight of that deeper somehow. It is a legitimate weight.
I have campaigned for Grace’s rights rather privately thus far. Advocating for her primarily in our church and her school. Believe it or not, that’s a lot. Plus advocating is just part of the special needs parent role. It’s separate from the paperwork, the appointments, the meetings, the actual hands-on care. The first time I advocated for her formally I was at a meeting where a county group was discussing cutting funds to her special needs daycare. The two parents before me had these incredibly powerful presentations with visual aids. I hadn’t thought about that at all. All I had was my planner. It had a huge pocket in the front and in that pocket I had a picture of Grace. When it was my turn I sat at the table, showed them my picture, apologized that I didn’t have a more polished presentation, and then told them our story. I told them about how no other daycare would take Grace. I told them how helpless it made us feel.
I feel a little of that helplessness now. Time has made me more polished I like to think. I can better describe how Grace is a whole person, worthy of what it takes to make her the best she can be. She has potential. She has character. She is not less. She is not a liability. She is a person more the same than different.
And in reality, any of us is seconds away from being in a situation where we could be very sick or very injured and need significant help.
So I’m afraid. But life continues. I’m working on my next blog post where Graham tap dances by a singing rock…