I'm the mom of two wonderful children, both with disabilities and special health care needs. I celebrate the fabulous joys and gifts they have brought to my life. But let's face it: a HUGE portion of my life is now taken over by dealing with the financing of their health care. It chews up large portions of my time, and it adds enormous stress and guilt to my already highly stressful life. But I'm one of the lucky ones.
You see, my husband has a job that brings in a good income. (I used to, before I stopped working to care for my kids – but that's another story.) And we have "good" private insurance. And the ACA is working to ensure the continuity of coverage we so desperately need to remain off of public assistance programs.
What does that look like?
Well, for us it means we can provide our children with some needed therapies and medical services and prescription drugs. We can take advantage of all the wonderful doctors and providers that are available to us in the area. So we're very lucky.
It means that we have made a conscious effort to NOT take a Medicaid waiver or other assistance, in order to leave those available for another family that needs it more. So they're a little lucky, too.
It means that we don't have to rely on the over-burdened and under-funded public school system as the ONLY source for providing our kids with their therapies and chances for success. Lucky!
It means that I have had to figure out how to work with our health insurance company. Rejected claims, hoops to jump through, and hours upon hours on the phone are all common occurrences. But I'm lucky enough that I have the time and the education level to deal with it.
It also means we have huge out of pocket expenses that we have to deal with. We have cut back our family budget again and again and again. We have to limit what therapies and services we choose for our children. We often have to make heart-wrenching decisions on what doctors to see or not. And it means that Mom and Dad end up not taking care of their own health in order to save those dollars for the kids. Not to mention all the other "normal" things we'd like to spend money on but can't – summer camps or extra-curricular activities or actually saving for our future. Lucky?
I'm lucky because now there are no annual limits on our available coverage for essential services. I'm lucky because we now don't have to worry about hitting our children's lifetime limits on coverage. And I'm lucky because we can now consider other job options without fear of losing insurance coverage altogether, due to pre-existing conditions. And all of these are due to the Affordable Care Act. I think our children and others with special needs are not only some of the biggest users of the health care system, they are now serving to test out how this new act can work effectively for the rest of our society. Today I not only celebrate all these benefits to us, but I look forward to some of the upcoming provisions in the ACA and how they will play out here in Indiana. I hope our luck continues…