Alright – so, First let’s describe what Minnesota Department of Human Services or the state Medicaid agency’s responsibilities are; They are suppose to protect and help low income Minnesotans and people with disabilities including autism. In other words, DHS is suppose to be on the side of the state’s vulnerable population.
Today, in one of their kazillian provider meetings – they did completely the opposite of their responsibility and obligations. Let’s remember while Minnesota autism therapy providers specifically ABA had more meetings and trainings than I can count, autism families had almost none, yet this legislation was and is suppose to be for and about autism children and their families.
Today was probably the worst meeting/training I have ever seen DHS conduct for autism. To start with John Z is no longer working on this issue which just made everything they said arrogant, ignorant, confusing, defiant and dismissive. Why was John removed who has been working on this legislation before it was even a seed? This was a stupid move for DHS. 2nd, the person who I guess replaced him Kim kept saying hurtful and wrong statements like “there are providers that will only do 40 hours a week for every child”. WTF? Wouldn’t this defeat the whole purpose of comprehensive multi-disciplinary evaluation (CMDE) and isn’t autism therapy suppose to be individualized? Let me write this with examples of what they said today.
On one hand – they told us that each child must have a CMDE which can be done by the treating provider or an objective one. Good right, wait for it…then the family takes that CMDE to a therapy provider to develop or write an Individual Treatment Plan. Good right, wait for it….the ITP must reflect the CMDE…good right, wait for it…..this is the big one..
The treating provider writes the ITP, but it does not reflect the CMDE, a week in the child’s life (which they said is required) or family preference (which is also required) and when the family disagrees with this ITP…please wait for it because I almost boiled when I heard it today…..drum roll please…….
The provider can say to the family “if you don’t agree with our recommendations – too bad so sad..we are not a good fit for your child and we can’t ethically provide what you are asking, please hit the road and don’t let the door hit your behind”.
So, we have wasted the time of the CMDE provider, the family for writing useless a week in their kid’s life just to give the treating provider the final say. What is the point of CMDE, family preference blah and blah if treating providers can still take or not take whoever the heck they want?
When I asked that question, I was told that is not an appropriate question to ask in a public forum. Now what now? WTF? Then they tried to censor us or silence us by asking that we write our questions. How rude. My advice – don’t have trainings unless you can answer questions and allow time for questions and answers from everyone in your preparation.
It gets better. I also asked what is the discharge criteria and who decides? guess who? still the greedy ABA provider. All DHS now wants is a “rationale”. I kid you not. Currently under the plan they have, providers just have to have a discharge plan and there are providers like MAC that say “we can discharge a child from his/her medically necessary treatment if they are uncooperative or unwilling to follow our recommendations”. Now DHS says well – let’s just add a rationale. How can I explain this in layman’s terms – let’s take MAC as an example since they are the biggest and probably the greediest ABA provider in Minnesota. The owners of MAC Ms. Marshall or Mr. Carey will hire a spineless QSP and tell them to write MAC is ethically unable to provide the treatment the family is requesting and that is “our rationale”.
I am not sure if I should laugh, cry or just scream.
At this DHS autism training today, it felt like I was in a meeting with the Koch Brothers, Warren Buffett or NRA lobbyist and they were defending business owners. The state Medicaid agency whose biggest responsibility is to protect vulnerable and poor autism families stood with the multimillion dollar ABA providers in a publicly funded program that we parents advocated our butts off to get it approved and even considered.
I was extremely disheartened and disappointed at DHS today and shame on them, but this will only energize me to advocate from different lenses including going back to the legislators because what DHS staff said today is NOT what passed in 2013 on a rainy night at 1am. I was there and there is no way in hell DHS is going to omit or change what we worked so hard for which was to help and protect children and families with autism.
Furthermore, this bill passed years ago and the fact that DHS is still confused, behind, can’t answer simple questions or wants to silence and censor families is beyond words can express.
Commissioner Jesson, the buck stops with you and at some point DHS has to be cohesive and sincere in this autism benefit by standing with children and families. You can’t keep giving breaks to the providers while kids get screwed, discharged, discriminated against and suffer. Your staff even had the audacity to say that “discharging or family and provider disagreements are rare”. Are they living in la la land because I know I brought to DHS many families that have been bullied by ABA providers. Many came to you on their own crying and heartbroken. For DHS staff to forget all of those children and parents is cruel and wrong. I ask you take a charge here and stop this insanity. Quite frankly – it is getting tiring asking the same questions and each meeting getting different answers. DHS needs to say what it means and mean what it says and be on the side of vulnerable kids with disabilities.
Above words do not represent any agency, committee or candidate.
Idil – Somali Autism Mom & Minority Advocate