Life in general can be hard. Being a parent can be hard. Being a parent of a child with special needs can be… you guessed it hard. Really. Hard.
As many of you know my husband and I are the parents of seven amazing and uniquely different children. Our oldest daughter and son are biologically ours. Our five little loves are adopted. All five of our little loves have developmental delays. Four have Attention Deficit Hyperactivity Disorder, two have Oppositional Defiant Disorder, one has Reactive Attachment Disorder, all five show signs of Fetal Alcohol Syndrome Disorder, and after receiving test results last week three have autism.
I would like to say I was surprised by the diagnosis but I’m not. Nothing surprises me anymore. All the signs were there. Sometimes you just have to have a doctor say it out loud. Our eight year old is what doctors call, high functioning. Our seven year old falls in the, moderate range. And now one of our five year olds also falls in the, high functioning range.
What have I discovered with having three on the spectrum? I have discovered that there are not enough services in our area. Actually there are not enough services in our state. And that makes me both sad and mad.
Our children are covered under the state Medicaid program. As part of the adoption they will receive a medical card until they turn 18. Its the states way of saying thank you for taking in and adopting this child. The medical card covers their treatments well in most areas. My husband also added the kids to his insurance to cover anything that the medical card did not.
Our seven year old needs extra therapy. He no longer qualifies for early intervention services. He is lost in the unknown. While we lived in Tennessee our children had a variety of services. There was Occupational Therapy, speech, and counseling services. They had even set up Applied Behavior Analysis services for the kids. Our seven year old was blessed to be in a school that provided these services in house. They were receiving everything they needed and life was good.
Then we moved back home.
I am so sick of fighting. So sick of the, we don’t cover that, statement from the insurance companies. And so tired of hearing, we don’t have a provider in your area. The closest ABA therapy center to us is over an hour and thirty minutes away. That means we would spend three hours in the car to make the visit happen. As any mom who has a child on the spectrum, I agreed to do just that. He needs the service and I will do whatever I need to do to get him the services he needs. I was happy in the fact I had finally find someone who was able to help. Imagine my disappointment after I got there, and had taken a tour of the facility, when they said, oh sorry we can’t except either of your sons insurance plans.
The Medicaid card covers services at 100% if the service is something they cover. Applied Behavior Analysis is not one of those services. It’s not covered okay, my husbands insurance should then pick up the difference. Wrong again. His plan does not see Applied Behavior Analysis as a needed service for our son. So here we are, we finally found a place but now that the new year has rolled around and new plans are in effect, we can’t provide basic services our son (and possibly our daughter) need. Explain to me how is that possible?
According to the Centers for Disease Control 1 in 68 children are on the autism spectrum. With numbers like this shouldn’t there be more providers to help? How can Medicaid not pay for services needed? How can major insurance companies not see the need for these same services? How can our children be covered under two different insurance plans and still not be able to receive services? I’m at a loss.
Yes we could pay for services out of pocket, the lady at the center told me so (how nice of her) but let’s be real. We can’t afford that. No one can afford that. I don’t care if you work in fast food or your a chief executive officer, paying out of pocket for services is expensive. Period.
West Virginia is in the middle of a huge debate over bringing in a Managed Care Organization to take over their Medicaid billing services. Instead of paying out 30 million dollars to someone out of state to “manage” payments how about spending that money to pay for services our children actually need? How about bring more providers that specialize in Applied Behavior Analysis or Reactive Attachment or other therapy programs for those for need them. Crazy thought I know, but as a parent who has children that need these services it’s my thought.
It’s hard being a parent in today’s world. Add on the fact that our children have needs makes it overwhelming at times. We fight for aides in classrooms (that’s a whole different post) we fight for Individualized Education Programs, we fight for equal treatment, we fight for normalcy. We fight for our kids.
And I will continue to fight. Why? Because they need me to be their voice. They need someone to stand up and say they matter. They need someone to say we need services for our children in our areas. I will continue the fight because I have to.
The fights are long, the fights are loud, the tears will fall but it is worth it. Worth it all.
Never give up the fight.
Pick up a copy of our story over at beautifulchaosmomma.com or on Amazon at https://www.amazon.com/gp/aw/d/1973619784/ref=tmm_pap_title_0?ie=UTF8&qid=1551187379&sr=8-3-fkmrnull