Have you ever heard of the saying – icing on the cake? I have and I usually know there is cake and the icing is a bonus.
I am not going to complain about DHS in this post about their icing on the cake for many areas in autism. In fact, I could not ask for more and I am done in my advocacy with DHS of assuring autism providers are trained in culturally and linguistically appropriate services, parents have a system in place to make their concerns and there is an objective care coordination to assure what is best for the child is going to happen. In other words, no more ASD parent will be bullied or belittled. Believe me when I say, I was bullied and belittled by some ABA providers and some might consider me a bull. Imagine how other autism families felt.
As a result, I have advocated high and low to assure what happened to us never happens to another family. And, I am happy to report all of these things have been adopted by DHS last year and especially this year’s legislative session. So, all is good on icing on the cake. And, I am very grateful to DHS leadership in taking the bull by the horn (if you will).
However, there is a problem because DHS had the audacity and the nerve to say to us there is no cake in applying the 1915i autism waiver benefit. Now what now? let me repeat that as I screamed when I read that sentence – now what now? Apparently the state Medicaid agency wants to apply 1915i autism waiver for fee for services autism kids. Let’s explain this – fee for service autism families are usually wealthier and mostly Caucasian kids who now get ABA through FFS by calling ABA skills training. Are you following me so far.
By the same token, managed care kids who are disproportionately minorities get denied for the same ABA or skills training by MCO (managed care organizations) such as UCare, Medica, etc. Because of this cruel and illegal double standard – we have advocated, begged and asked almost four years for the state medicaid agency to call skills training ABA because that is what it is and cover it for ALL kids, especially for low income kids because after all Medicaid was designed for low income families.
Personally, I have been told by DHS yes and yes and yes the new benefit will be equal for all. Then comes their 1915i application draft which said this 1915i autism benefit is for fee for service because managed care is under different authority. I am lucky if I didn’t drop dead when I read that, really I am not kidding. What does not kill you makes you stronger. So, calmly, (not really, I was screaming) I asked DHS are you kidding me what the hell is this sentence. Initially they said – calm down that is why we want public input and comments. I wasn’t sure how to respond to that at first because why would they even ask any public person if a bias policy is OK. Does that mean if the public is OK with it then we should continue to discriminate against the low income autism families that Medicaid is for? What the heck? Sorry I meant what the hell kind of response is that.
Then they said – well we plan on asking the MCO’s to adjust & add the same coverage as FFS when their contract is up end of the year. I think I had a mini meltdown when I heard that. Let me put this in layman’s terms. DHS telling me that is like a husband saying to his wife, I am sorry as he beats the crap out of her. Better yet, it is like Mike Tyson saying to Evander Holyfield – let me say something to your ear. Come on – we are not stupid.
Do you know how many DHS people told me they are working on MCO’s to correct their contract and include autism therapy (ABA). Over and over I have been told that and nothing was ever done which is how this 1915i came about from CMS. And, now DHS says trust us we will be fair this time. Fool us once, shame on you – fool us over and over, shame on us.
I for one am NOT buying this. The fact that MCOs are under DHS and DHS has not corrected this problem for years is reason enough to not trust them there will be cake for all of this icing.
Icing is only good if there is cake under it.
In sum, DHS can not and will NOT discriminate against low income autism families by only writing FFS in this 1915i application. How is this for irony, we get discriminated in our own ideas and advocacy. How do you like them apples, and we wonder why there is racial autism disparity.
I am not sure how DHS will fix this, but they have to or the gloves are coming off and we are not asking. We will take the same route that Florida and Washington state did when those states also discriminated against low income autism families.
To DHS – you want our public comments for a bias policy. We can not and will not accept, that is our comment and you need to fix this now before you send to CMS because we will take our fight to them as well. No more bias autism therapy. In paraphrasing the words of George Foreman – we are not going to take it anymore.
Thanks!
Above words do not reflect any agency, candidate or committee.
Idil – Somali Autism Mom & Minority Advocate