Alright – so, the new Minnesota Department of Human Services’ Autism benefit is almost done – yay. This has been a long and difficult journey for me personally given that it all started after I was discriminated and bullied by so many MN ABA providers.
To put this into a context, currently MN covers and pays for ABA therapy for wealthy fee for service children and families by calling ABA skills training. In other words, for low income managed care kids – ABA is often denied, even though the funding is Medicaid. Think about that for a minute and the level of health disparity it creates and has created for the past several years.
If you are Black or Brown person – you have heard of the sentence “not a good fit” probably more times than you can count. This sentence is used in employment discrimination which is why Minn has the highest Black un-employment in the whole country. It is used in health care setting – hence the horrible racial health disparity we have in Minnesota. Then you add “discretion” and you get wide education gap, justice disparity and high suspension and expulsion for minority students. In other words, discretion mixed with not a good fit is the sole reason of so many gaps and disparities and now we want to add this lethal sentence to Medicaid coverage Autism therapy coverage. Are you bleeping kidding me.
Isn’t it bad enough that most Minnesota’s ABA therapy providers don’t already take minority ASD kids, DHS can not have any more lax oversight and create even more disparity which will only cost more in the long term. In today’s DHS meeting this was the theme from ABA providers who were mainly saying if a parent does not agree with our whatever then they can leave because it is not a good fit and it is our discretion. Can you imagine if a public school or a clinic said that. It would make the news, yet these Minnesota ABA providers that are getting millions of dollars of public funds from both state and Federal are such at ease getting rid of children and families whenever they feel like it and call it their discretion and not a good fit.
They can use their discretion to not take the older kid, the black kid, the minority child, the mother they don’t like, the nonverbal child, etc and etc. DHS can not let this happen in a publicly funded program that is already bias in so many ways. This will lead to so many lawsuits and class action problems because so many children and families will suffer due to a provider’s discretion.
There were other items we talked about today which I can’t possibly write into one blog post, but one that sticks in my mind now was the quality of the therapy and oversight of staff and training of staff. I heard many ABA providers say we have this good oversight and that great training program. As the Elizabeth Tylor of ABA – I am sure what they say is not what always happens. I along with many other parents have seen a provider have good policies in writing of how they overlap or supervise their staff and evaluate children, yet not follow it. I and other parents have seen ABA centers look like a Hilton lobby with all of the state of the art feel, yet fail our kids miserably. I along with other parents have seen an ABA provider have well written informed consent that has appeal and grievances policies, yet refuse to follow it.
I along with other parents have seen an ABA provider manipulate ITP graphs or justify a child learning one skill to get the treatment, yet discharge a child that learned hundreds of skills in the same time period. I along with other autism parents have seen an ABA therapy provider say to a parent we don’t have staff in your area, yet fill it for different color families. I along with other parents have seen a provider’s psychologist sign off and recommend intensity of hours on an ITP for a child they never evaluated and a family they never met. I along with other parents have done provider surveys and were punished for our opinions because they said if we thought like that, then we were not a good fit for their services. I along with other parents have seen a child get discharged or not accepted for their behaviors by the behavior clinic. In a state with less than two dozen ABA therapy and couple of DBI therapy providers with thousands of autistic children, it is clearly about supply and demand resulting families having few choices and afraid to speak up.
In sum, the notion of leaving this benefit’s quality, oversight, plan of care, etc – to their discretion is cruel, wrong, insane and stupid.
We need from DHS an autism policy that is based on medical necessity based on actual research not the owner’s pocket size or opinion.
We need from DHS an autism benefit policy whereby if parents are bullied, retaliated against or discriminated against – there is a process and a pathway for them.
We need from DHS an autism benefit policy that assures the child gets treatment that is truly child centered, family driven and culturally responsive in reality and when it does not happen – a safe place for families to go. Visiting MN ABA centers or providers who will sell you their sugar ideas and Hilton lobbies is not helpful and waste of time. My friendly and gentle suggestion to DHS would be use common sense, see what other states have put in their state plans or policy books, get technical assistance from CMS and talk to current and past autism ABA parents then make a decision and stick with it.
Imagine if MN child care centers were allowed to function at their discretion. Imagine if public schools were allowed to function at their discretion, imagine if health care clinics that get public funds functioned at their discretion and got rid of patients because they thought it was not a good fit. If you can’t imagine those scenarios then why are autism families being put through it.
The goal should not be to keep any provider in business because we are in short supply. The goal should be to get rid of racist, greedy and in-humane ABA providers and keep compassionate, kind, reasonable and fair minded providers who are in this for the children and families.
We need from DHS to hear and really listen not just to those that show up in these meetings, but maybe send survey to actual ABA families in a anonymous way since most parents are scared their child will get discharge if they complain about an ABA provider. In-case anyone is in denial about Minnesota’s horrible racial disparity read here, here or just google it.
Above words do not reflect any agency, committee or candidate
Idil – Somali Autism Mom & Minority Advocate