When we received an autism diagnosis last Fall for Emery, I sighed with relief. After nearly 2.5 years of trying to help her and figure her out, testing this and that, and never really getting anywhere, we finally had a starting point. A basis to develop a plan to help her. I thought we had reached a peak in our struggles with medical professionals and health insurance agencies. We had an actual diagnosis. We lived in Michigan. Michigan has a mandated autism benefit law. I had been so desperate to help my daughter for so long. Now, everything should fall into place, right?
Not. My first dose of reality came when I learned that the company my husband works for is self-insured. What does that mean in the world of autism? State autism benefit laws are not applicable to self-insured companies. These companies are governed by the Federal Government, not the State. Self-insured companies are not required to provide autism benefits. Unfortunately, many large sized companies are self-insured because it is economically beneficial. This results in a "crack" in the system between ASD kids able to receive medical care and and those that can't. Emery slipped into this crack.
After feeling completely devastated and having a good cry, I once again got back on the Internet trying to find a way to get my daughter the medical care she needs. My research led me to two state and local organizations that provide insurance or medical care for ASD kids not covered by insurance. I started to feel like all hope was not lost. I contacted both organizations immediately.
At this point I received my second dose of reality. The first organization told me that they do provide medical care for kids diagnosed with autism. The caveat? The child must be under the age of six. Emery was 9 at this time. Another crack. The second organization provided low cost insurance coverage for a variety of illnesses. Any child age 18 or under not otherwise covered qualified. Great! Emery's age would not prevent her from getting the care she needed. Over 2,000 diagnoses were covered. Autism was not one of them. Crack #3.
More tears and hopelessness ensued. Now what? I had a soon to be 10 year old daughter, that has an autism diagnosis, cannot talk, pulls her own hair out, slams her back into walls and counters, has too many ocd behaviors to list, and I cannot get her the medical care she so desperately needs. What is wrong with our society?
We then decided to check into an individual health insurance policy for Emery. Obamacare makes it legal to obtain a secondary insurance policy, if autism benefits are not covered by the child's current insurance policy. Unfortunatley, we did not qualify under Obamacare for low cost insurance. The annual income threshold is quite low and it doesn't account for a family's expenses. Anyone with special needs in their family understands the additional expenses incurred with special needs. My husband makes a decent salary. But, in no way could we afford the recommended 24 to 30 hours per week of therapy at $200 per hour. So, Emery fell into yet another crack.
If we wanted to get Emery the therapies (ABA, Speech, and Occupational) recommended by her two neurologists, her psychologist, and her pediatrician, we would have to purchase a private health insurance policy for her. So I began looking into individual insurance policies.
We ended up buying a very good policy through Blue Cross Blue Shield. The policy eventually covers autism benefits (more on this in another post) and has low co-pays, a low deductible, and low out of pocket costs. Of course, this does not come cheap. $300 a month. It is still cheaper than paying for her therapy directly. We are not taking her off our family policy because there is zero cost savings. We pay a flat family rate for our current health insurance regardless of the number of kids on the policy.
I believe the extra $300 per month will be worth it for Emery in the long run. The ironic part about this situation is that our family insurance policy is also with Blue Cross Blue Shield. It is crazy that we have to have a second policy to cover ASD. I wonder what other diagnosed illnesses companies are not required to cover?
Emery slipped through every crack possible. I am grateful we can afford the $300 per month. I am certain other families fall through the cracks. What happens when a family cannot afford a private policy? Their ASD child suffers unnecessarily. It just doesn't seem right to me.
Part 2 coming soon.