Losing a Waiver

Today, I received a call that I cannot believe was made.  Marissa's case manager called to let me know that Marissa lost her ID waiver, effective yesterday.  For those of you that are not familiar with the waiver process here is a short summary.  Basically, the Commonwealth offers a few basic waivers to help children and adults with disabilities.  It is not an easy process to qualify or get approved for a waiver.  The waiver system, automatically gives Marissa medicaid (which is a secondary for her) and services that she needs for her medical care.  This is what I will say about her waiver, two years ago one of our Delegates requested that I keep a log of how much money we would have to pay out of pocket for Marissa if we did not have medicaid as her secondary- the cost was staggering but it was just under $150,000.  Yes, this would have been our out of pocket pay for Marissa to continue to see her specialists at UVA and to receive her Physical, Occupational and Speech therapy weekly.   We lost the waiver because a policy was not followed, a mistake by someone else not us or Marissa but yet she is the one that is now going to be penalized.  No one but her. 

So as I sit here, I have just finished my appeal letter to DMAS.  I have called everyone and anyone I know that could or can help us.  As I was writing my letter, I just broke down and cried.  And those that know me well, know this doesn't happen often.  Usually when I cry it is about Marissa.  Marissa has been doing so good lately.  A few bumps in the road but she is making so much progress.  Now, because of someones mistake and until the appeal process runs its course, Marissa's services are terminated.  I just don't understand.  I don't get it.  I'm tired.  I'm frustrated.  But most importantly, I'm mad. 

I'm asking each and every one of you that read this to really understand how politics affects children and especially children with disabilities.  Autism is real.  I DIDNOT do something to my child to make her have disabilities.  MY child should be covered.  Families that work and contribute to society should be afforded the same opportunities for their child as a poor family.  If Steve and I were to quit our jobs, sell our home, live in an apartment- guess what- Marissa would have medicaid, we'd have food , and we would be able to draw on her SSI (Social Security Income) for disabilities.  I mean really, this is where we are as a society? 

Those of you that pray, please pray.  Please pray that this situation will be resolved quickly and swiftly.  Pray that I will keep whatever sanity I have left (haha- I know, I know-like I was sane to begin with) and that God will put the people and open doors for Marissa.  I don't want this to be a stumbling block for her and her progress.  And as you go to the polls in November, make sure you do your research about the candidate.  Understand that this is a problem not only for us but for other middle income families who are facing the same dilemma daily.  That is your job as a citizen of the this country.  Take it seriously!