Thursday, April 2, was my birthday and World Autism Awareness Day. I can’t think of a better way to celebrate than to see my friends, and my daughters and their friends, where blue to support awareness. It was a wonderful day full of happiness and A LOT of blue !
April 3rd however brought about some very different feelings. We received notification that it was time to reapply for Milo’s Medicaid. Apparently you have to renew it every year, and with this being our first year we somehow missed the date. We really didn’t think it would be at all and issue given that he was granted the service specifically for treatment purposes. We thought wrong. According to the representative, we were granted Medicaid by a fluke and incorrect data entry. Someone had entered our household income as zero. Of course we had given them all of our true information including Byron’s employer etc., but there happened to be a mistake upon entry which enabled us to get proper treatment for our sons early intervention. So on April 3, 2015 we were told that our Medicaid will not be renewed, and the end date for services will be April 30, 2015. No services. None. Zero. Unless we pay out-of-pocket which will be over $29,000 a year.
Last year after Milo’s diagnosis we were given a lot of information. We felt assured and confident that we would undoubtedly get services for our son who desperately needs the help so that he can grow and succeed in life?! I mean, how would he not be granted what he rightfully deserves? Wrong.
We applied for the EDCD medicaid waiver. For those that don’t know, there are waivers that, if you meet the requirements, you will be granted proper therapy treatments, respite care, equipment for special needs if needed, all with having a medicaid waiver. This is an option because clearly, very few people have funds to support their special needs family member. The waiver funding is not based on income because it is about the child (or adult in need), not other members of the family. To our surprise, we were denied and below you will see in the letter their reason for the denial.
The reasoning was unreal! We have an innocent little boy diagnosed with autism, developmental delays, and hypotonia, and he can’t get funding?! With having a small breath of strength, we had to fight it. We wrote a letter, weak yet adequate. After writing this letter we received another letter saying their decision was upheld. So we had a diagnosis, prescription for therapy: OT, PT, speech, and ABA, yet no one could help us. I was devastated- it was a very dark time. Then we get a letter with a medicaid card attached stating we now have coverage. Wait, what?! We took off getting assessed for ABA and speech since those were the most crucial. We were in! We didn’t know how but we knew we had medicaid. I honestly thought we had the waiver and they someone changed their minds. I was emotionally and mentally exhausted, at the time could fight no more, and didn’t dare question the decision. After all of the assessments we now had the ball rolling. I was still emotionally weak due to lack of help and worry, but I was ready to take on whatever it took so our son could have the best possible chance.
In the past six months, Milo has gone from having no words at all, to speaking in short sentences. His behavior has improved, walking up/down stairs has improved but he still needs assistance due to hypotonia (low muscle tone), eating with utensils, trying new foods, communication has drastically improved both verbal and non-verbal (pictures), he is now able to be with peers his same age and even interacts with them, we are able to take family outings; brief yet successful- basically he is living proof that early diagnosis and intervention is the best way these kids have a chance. But now it’s gone. This innocent little boy could get help for a year only because of a careless blessing.
I am proud to say that I now have A LOT of fight in me. My son doesn’t have a voice in this area, so I am charging full force into this war zone and I will not take no for an answer. I will fight, and keep fighting by my God given strength for what my son deserves, because He has now equipped me with The Full Armor of God.
Just As Ephesians 6: 13-17 states:
“13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God”
I will most definitely update and share the status of the applications, as there are many. I will say that we have so much support and love from our friends, and we are so very grateful. I have had so many people express to us how we have helped them. My primary purpose of this blog is to:
1. Help parents, caregivers, aunts, uncles, friends, etc. recognize the early signs of autism. The earlier the diagnosis and interventions begin, the greater the chance of successful treatment is for children of the autism spectrum.
2. Help people understand what autism actually is, and to help them accept the children and adults on the spectrum for who they are. The behaviors that you see are merely a symptom of the difficulties these people face.
3. Help the public know that when it’s time to “light it up blue” on April 2, 2016, that we need you. Our children deserve for people to know that there is very little help now, and it’s time this changes! We need for adults to take part, but we also needs schools and children to take part. EVERYONE needs to be made more aware because autism is increasing more every year. Our community needs help and it is done by you.
I think some get offended by the awareness aspect. I’ve talked to some parents that just want acceptance. Well, sadly we won’t get acceptance if people don’t understand. I want to make you aware and we need your participation.
Regardless of what happens with Milo’s therapy, we will continue to fight for him. We will be the voice that he does not yet carry. He is worth every second of the fight. Thank you for taking the time to read this post, and PLEASE share the information. Things need to change for our kids with autism..and NOW!