The State Medicaid Agency does a “Sybil” Like Training on Autism

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Alright – so, Minnesota Department of Human Services (DHS) is the state’s Medicaid agency and is overseeing the newly passed by the Federal government autism therapy coverage benefit. This passed the state in 2013 and was approved by CMS in March of 2015. I would say DHS had at least years from the state’s point of view and months from the federal government’s view to study and digest this benefit.

They’ve done several other trainings on this and in my opinion did a little bit better than the last one. The last training was for providers. It was about the individual treatment plan policy and the comprehensive evaluation. The way these two items are written into the state plan amendment is very clear. Parents/families have a right to get an objective and non-bias comprehensive multi-disciplinary evaluation (CMDE) for their child. They also can write a week in their child’s life along with any items relating to their culture or family values. Then they can take that CMDE to the treating provider who writes an individual treatment plan based on the CMDE. Sound simple and fair right? well that was the intention.

Then DHS decided to mess things up and give us a confusing and conflicting Sybil like training where they said one thing then said the completely opposite thing. For example, someone asked a question online through the webinar training “what happens if the treating provider disagrees with the CMDE or the family’s preference culture and values, can they appeal and/or not take that child?”.  To my shocking surprise the Sybil trainers said “YES”. WTF?

Then I got irritated and asked “what is the point of getting an objective comprehensive evaluation and the family writing their child’s life in a week and the family’s culture if at the end the treating provider can just disagree and discharge the child”? In other words, why are we wasting money, time and effort to be back to where we are now?

Then the usual happened – first, I was given the hand to try to silence me then I was called …..drum roll please – difficult, disruptive, emotional and angry Black woman. Gee – I wonder where I heard that before. (Don’t worry such rhetoric is my energizing latte)

Afterwords, I called DHS and they told me I misunderstood and that the way its written in the plan is correct. Here is what I think; in private at least with me, DHS says they want to provide person centered services that are individualized, medically necessary, child centered and culturally responsive. Then in public with the providers they say the opposite of they are a provider centered, could care less about culture sensitivity, medical necessity and tell the ABA providers – just use your diluted and greed based clinical judgement to justify abandoning children.

Here is the problem with that idea – it is not what passed in state legislature nor what was approved by the federal government. DHS can you please say what you mean and mean what you say and stick to the script of the actual legislation that passed. I for one am sick and tired of being sick and tired. When will DHS do the right thing for children and families with autism?

By the way, when DHS says to us “we have come a long way or you are not the only one” is no longer good enough. That is like saying to a patient that goes to the ER with pain, and the nurse tells him – you are not the only one or we have come a long way because we now have computers. It does not make the pain and the frustrations any less and is insulting to the victim.

Above words do not represent any candidate, agency or committee.

Idil – Somali Autism Mom & Minority Advocate

Category: Autism Policy