My son Mark was diagnosed with autism on January 27th, 2015. We were applauded for recognizing the signs and seeking an early assessment. The developmental pediatrician at Kennedy Krieger Institute in Baltimore, MD gave us a list of therapies and interventions that have been proven effective in helping children with autism. I quickly began searching for reputable providers to begin services and as part of that research I called our insurance company to make sure that Mark was covered. My husband and I both worked for employers that provided health insurance and our health care was provided through my employer. I called the number on the back of our insurance card and after a 30 minute phone call, I felt like the wind had been knocked out of me. They informed me that I work for an employer with a self-funded plan. They did not provide habilitative coverage. I learned that when a child doesn’t have skills to begin with, such as the case with my son, the services needed are not rehabilitative, they are instead habilitative. These services are likely not covered because they are more expensive and long lasting, costing the company much more money. Because my employer has a plan that they self-fund, they are not subject to the state of Maryland mandate that requires coverage of habilitative services. This meant that in home therapy and intensive speech therapy, both of which were highly recommended for Mark, were off the table.

I then learned that in our state, there’s an autism waiver that would pay for these services but there’s a nine-year long waiting list. Mark would be 11 before he would potentially benefit. And our local school system has a parent training model where they only provide limited visits, once or twice per month with the intention of training parents how to provide intervention for their own children.

Kennedy Krieger’s billing office gave me a packet of information that has helped other parents lobby to have their children’s services covered by their employers. Immediately I contacted my Human Resources department who put me in touch with our insurance representative. He confirmed that there was no budging on the habilitative service coverage and directed me back to HR. I called and emailed until finally they set up a call with the broker of their plan and had a closed meeting, for which I was not permitted to attend. During this call, it was determined that no changes were to be made, regardless of my appeal.

Head spinning, I began desperately reaching out to my friends with children on the autism spectrum. I contacted a veteran autism mother who very matter of factly told me, “this is what you are going to do, you’re going to purchase a plan through Obamacare”. I knew nothing about government sponsored healthcare as I was always employed and covered by my employer’s plan. I didn’t understand the market or the exchange, or anything about how it worked but all of that changed when this became my only viable option to make sure that my son’s therapy was covered.

After several hours of phone calls with representatives through the Maryland Healthcare Exchange, as well as the assistance from our local health department and a local insurance broker, they were able to help me make my case that my employer’s plan was not providing adequate coverage. They allowed me to shop the plans on the exchange outside of the open enrollment period. I purchased the most comprehensive, and expensive plan I could find that would cover all of the speech, occupational and physical therapy he needed. His services started soon after I received the insurance card, which was about five months from the time he was diagnosed.

Since this time, Mark has made progress, learning to walk, feed himself, make eye contact, point, request items with gesturing, match colors, shapes, recognize and distinguish family member’s photos and follow basic instructions. At the time of his diagnosis, he spent 80% of his time spinning in circles on the floor, avoiding eye contact, and staring at flashing lights.

Mark is far from neurotypical, but his behavior has improved and he has been able to gain functional skills. The pressure that was lifted when therapists began coming into our home to provide services was priceless. I could focus on being his mother, and caring for both of my children, instead of being the therapist I knew he needed and we couldn’t afford.

We didn’t qualify for government assistance or receive help to pay for the high premium, but that was ok with me because I knew that there was no way we could have afforded the care he needed without insurance. Without this coverage, the services my son receives would cost us $10,000 per month.

I wanted to share our story because I have read some rather hurtful and inaccurate statements and comments about the Affordable Care Act and those that it insures. I am not mooching off of the system. I went to college, graduate school and have been employed my entire working life. If the Affordable Care Act was not an option for us, I would have been failed by the system that allows a large employer to deny coverage for an expensive diagnosis. Receiving the news that our child has autism was painful enough, but the thought of not being able to get him the care he needs to be as functional as possible is excruciating.  

Please share our story. Contact your local representatives and demand that they reconsider completely dismantling the Affordable Care Act without at least considering the millions of people that have benefited from its existence. This is only one story, but I’m sure there are others out there like us.