Alright, so if you understand autism policy in relation to autism therapy then you know there are over 35 states with early intervention autism therapy coverage for higher income autism children – thanks to Autism Speaks who solely advocates for wealthier autism families that have private insurance coverage. Now, I don’t want to get emails from pissed off wealthier autism parents asking what I have against private insurance autism families. I have nothing but respect and admiration for those families. My concern has always been where is the equal intervention for low income autism families who we know are disproportionately minorities.
Well – I have zero concern no more due to recent announcement by Ms. Mann who heads up Centers for Medicare and Medicaid Services (CMS) children coverage including autism. I am not even sure where to start here because there are so many angles and process that took place to get to this amazing place with CMS.
Let’s see – maybe we can start when so many state legislatures started approving coverage for only private insurance autism families, some of the low income families in few of those states started seeing the double standard and sued their state Medicaid agency. Florida and Washington autism families that have Medicaid sued and they both won whereby a Judge ordered those state Medicaid agencies to cover similar autism therapy as private insurance. So that therapy coverage is not seperate and un-equal. As a result, state of WA sent a request to CMS asking to add early autism therapy coverage under their state Medicaid plan of Early, Periodic, Screening, Diagnoses and Treatment (EPSDT). This meant every child from birth to 21 who had a disability or a medical condition including autism would get early screening, diagnostic and treatment for their condition without the state having to apply the ever cumbersome waivers.
Then the good news came when couple of weeks ago – CMS approved Washington’s plan. YAY!
In parallel, many advocates including me have asked CMS why should families sue their state Medicaid agency to get the necessary medical treatments their children needed. In other words, if CMS is under the umbrella of HHS – same as CDC who says learn the signs so you can act early then NIH says act early and get early intervention. CMS under that same umbrella could not say to the same families – so sad/too bad we don’t cover early intervention. I have asked high and low all the way to CMS administrator Ms. Tavenner and Ms. Mann and God knows I have asked (ok – harassed) so many other CMS folks. The goal was autism parents who are already stressed and tired to not have to collect data, be denied services then find a lawyer, then sue their state, Come on. That was simply too much and too cruel.
This took a really long time and I have heard everything in the book of well – we can’t just approve ABA because ABA was created after EPSDT rules were written by Congress, to no CMS can’t cover ABA, Floortime, etc because of yada yada and more yada, to parents must ask their state Medicaid agency, to parents must ask their local legislators to you name it. Well, needless to say – I never gave up and wanted equality for low income autism families along with countless other autism advocates minus Autism Speaks and we finally prevailed.
On the last full committee IACC meeting, Melissa Harris (Love her!) From CMS gave us the best news ever that I think I got goose-bumps. Melissa said states can now add autism therapy coverage of both behavior and developmental therapy to their state plan under EPSDT. OMG – you read that right. That is like getting a gift from Nelson Mandela and Mother Teresa in one package of kindness and equality. What a way to end this cycle of IACC. I was sooooo happy that I wanted to hug everyone from CMS that day. I think what CMS did will definitely decrease autism racial disparity over time as more low income children get access to hassle free autism intervention and get diagnosed early which will improve their best outcome.
I am personally very grateful to so many people at CMS that God knows I have been on their case relentlessly and persistently, especially Ms. Mann, Verlon, Courtenay, Tavenner, Khalid, Keri & Ellen, but most of all John who no matter my pissed off attitude stayed on task and concentrated on what I said, rather than how I said it. Thank you John for tolerating me for so many years starting with your first day at IACC which I think my words shocked you to say the least. I think you are awesome and I along with hundreds of thousands of families across this country are very grateful for your support and help. In borrowing the words of Neil Armstrong – this was a giant leap for autism families across this country from Alabama to Alaska, from Washington to Wyoming – the grass is now green and intervention is available for ALL autistic kids.
I hope every state changes their state plan and adds autism coverage under their EPSDT which will cover children from birth to 21 in screening, diagnosing and intervention for both behavior and developmental therapy. CMS even created a new email ([email protected]) for state Medicaid agencies that have questions or need technical assistance – how awesome is that.
Here is the full letter from CMS explaining in detail how autism therapy can now be covered for all fifty states.
July 25, 2014 – My good friend and fellow IACC member whose opinion I value and respect just posted a blog on this very subject of autism, Medicaid and IACC. Thanks Matt! To read this post, click HERE.
Thanks!
Above words do not reflect any agency, committee or candidate.
Idil – Somali Autism Mom & Minority Advocate