Why do you get help…

…and my more medically complicated child gets none?!

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Over the last week or so, the questions and concerns have been made regarding assistance for children with autism that have complex medical needs.  Why are some families qualifying and others not?  What is the missing piece?

The information that started the discussion was about Medicaid.  Our family just recently qualified for Children’s Medical Services (CMS) in Florida.  I was thrilled and intrigued to understand how we were able to get services.  It lead me to study and read the multiple websites about CMS.  I did figure it out!  It is not black and white; it is grey.  The state does but the language in clear print that is understandable.  In order to qualify you have to not be eligible for Medicaid but

Children eligible for assistance using these funds must be uninsured, or insured but not covered for medically necessary services, or unable to access services due to lack of providers or lack of financial resources regardless of insurance status.”

Read the full article.

 

THIS is the most important phrase following not eligible for Medicaid.  I am on several national and state based autism Facebook pages.  We are all a community and want to find help and services when on these private pages.  Recently,  I questioned things I have said and claimed because the tips that I share via this blog have helped me or members within my tight group.  We really did get CMS and everything that I shared is fact based with the statue link.  There are no income based requirements; I thought that too!  Then I dug deep and really read the website and the exact words that were stated.  I absolutely am here to help other families get education, learn to advocate and get access to great therapy.

It is concerning when we think…well, that’s not fair; why does that family/child get services and my more medically complicated child gets none?!

I don’t have the answer but there are some suggestions and conversations that can start and hopefully together we can help each other get the help we all need.

  1. the squeaky wheel gets the oil

Reading the article from the LA Times, even though it was written several years ago, is relevant to understand how #autismmoms get help and services.   The article addresses how moms that have time to invest in advocating for their child’s needs get the money, services and education.  The article calls them “warrior parents”.

“Am I more entitled than someone else?” said Funk, … “No. But that’s how the system is set up.”

Getting a wide array of help for an autistic child can require waging a small war with the gatekeepers of state and school district services. But not all parents have the time and resources to fight the way Funk did. That contributes to striking disparities in how services are distributed.

Full article

2.  understand that discrepancy will happen and it will happen more for parents and children that are of minority racial background or low socioeconomic status.  There are many issues within racial and ethnic backgrounds in relation to access to medical treatment and resources.  Research has been done that more often children from a minority race or ethnicity are less likely to receive a medical diagnosis of ASD.  Without the ASD diagnosis, parents can not access proper treatment or advocate for the best educational setting.  See article: Differences in Autism Symptoms between Minority and Non-Minority Toddlers

3.  Advocate! I like how the mom in the LA Times article said, “Wear a fake diamond ring,” fake it to you make it and don’t let others see or know that you are tired, lack resources or feel weak.   She was featured as a “warrior parent” because she was willing to go to the lengths of getting lawyers, getting advocates, educating herself and speaking for her child.

If you have ever thought about my question, why does that family/child get services and my more medically complicated child gets none?!  Then, we need to talk and have a real conversation.  I’m not here to only advocate for my child, what I do has to change the way others after me are treated.  Holding professionals accountable for their actions, treatment and accessibility is what we all need to do for our community.  I really want people to ask me, how did you do it and can you help me get it?

There is no reason why as a family of autism parents that we cannot openly discuss what and how we found and accessed the services and support needed to help our children.  Do we really want other women to suffer the way we are?  The pain, fatigue, tiredness, and worry is not a right of passage as an autism mom.  We are the trailblazers so that those that come after us can rest assured.  We cannot stand by and fight for our child and not pick up the fight for others.

  • Identify the problems
  • Stand for what is right
  • Push for equal access
  • Use your voice

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