Alright – so, I am always advocating against these blood sucking MN ABA therapy providers. And, I started thinking why does ABA cost over $100,000 per kid per year in Minnesota? Is that why our state attracts these blood sucking greedy bastards – not a typo. So, I looked how other states cover and pay for ABA therapy. First, let me say clearly before I get contacted by mad ASD parents asking what I have against ABA. Nothing. I really think, let me re-phrase that – I know Applied Behavior Analysis works and helps when done right, early and intensely for children with Autism Spectrum Disorder.
Many have heard refer to myself in state committees or even in Federal autism committee as the Elizabeth Tylor of ABA. I have been divorced and belittled by so many of them which is why I became an advocate for the children and families and usually against these blood sucking and racist MN ABA providers. Most Minnesota ABA providers don’t take minority children when they are young which is when ABA works best. Or they discharge them to make room for non minority ASD kids. I kid you not, this happened to me and it happens to so many other Somali parents who often don’t know who to call or where to get help. I have seen an ABA provider tell me my child would not be cured from autism at age 5 and that teaching him at a cost of $100,000 was too expensive. Therefore, it was not worth the cost. By the same token, this same ABA provider was doing ABA therapy for non minority autistic kids who were older than my son, some twice as old for the same $100,000 per year. If you are thinking how this made me feel. I was hundred degrees above livid and energized. It is the reason, I became a fearless advocate for minority children and ABA. It is the reason, Minn passed the first and only its kind of ABA therapy for low income MA kids in the country. It is the reason CMS changed its rules under EPSDT for autism and ABA.
To say it drove me is an understatement. No parent should feel what this provider made me feel. And, no child’s learning dreams should be crushed by racist ABA providers. As a result of our advocacy, few of the MN ABA started taking our kids usually when they are older and can’t really benefit from intensive 40 hours of ABA therapy, but sadly they demand it and if parents refuse or even ask to do 3/4 of the hours, they are often discharged. I have seen this at least weekly.
Now what this has done is attract minority blood sucking greedy ABA wanna be providers. For instance, there is a Somali person who now wants to open an ABA center. Not bad right? Well – it would not be if he actually understood ABA autism therapy from lawyers ABA. If he actually cared about autism children and families. If the daycare he owns now did not have so many child safety violations. In other words, because MN ABA costs over $100,000 per kid which is outrageous and wrong is now attracting everyone and their mamas to open an ABA center.
Our children are vulnerable and can’t tell us what happened. I ask DHS to have a better oversight and not let any greedy jerk open an ABA center even if there is a need for diverse ABA centers. Let me put it this way, Justice Thomas looks like me, but I would not trust him with my voting rights. Just because they look like us does not automatically mean they care about our children. Nor does it mean they understand autism and ABA therapy.
So, I ask Commissioner Jesson who I think is simply amazing and God knows I have been barking in her corner since her first week of becoming the DHS Commissioner.
True side story, the first time I met Commissioner Jesson was when she came to testify or introduce herself to the senate health committee back in 2011 when Sen Berglin was the Chair. I saw Berglin going to the committee in that long hallway that connects the state office bldg to the Capitol where the senate hearings are located. And, I thought to myself how lucky I was because that is a long hallway and Sen Berglin was a hard person to see. But now she has no choice but to talk to me. So, I bombarded her with what to ask Jesson and gave her kazilian notes and information. I am sure she was thinking – calgon please take me away.
At any rate, Sen Berglin asked Jesson what she intended to do about autism especially in our community. And, I remember Jesson said to her “I have only been in this job for 4 days”. So, I gave a note to one of the pages to give to Berglin that said “that is four days too long – get cracking already.” Anyway, to make a long story short from that day on – I have been consistently and persistently asking DHS to assure there is no racism in MN ABA providers. And, there won’t be hopefully because we have passed this new MN ASD benefit.
Now and almost end of my advocacy with them, I ask Commissioner Jesson and DHS Autism team;
1. Why does ABA therapy cost $100,000 in Minnesota? this only attracts greedy bastards who could care less about our kids?
2. If ABA full intensive costs $50,000 in WI and even less in many other states – why is it so much here?
3. Is there a way for DHS and managed care to assure ABA does not cost this high and that it is reasonable so that only those that care about our kids stay in the business and greedy ones leave?
4. When a parent is discriminated against by an ABA provider, where and who should they call and What rights do they have?
5. When a child is older and does not need 40 hours of intensive ABA therapy as research states, yet ABA provider forces them to, where do parents call to get help and what are their rights?
6. Can you please make sure just because someone has CTSS certification does not mean they can operate an autism center? CTSS is under such big umbrella and those that have CTSS does not necessarily know or understand ABA or autism.
7. Can DHS have clear rules and policies that allows parents to see and visit their children in ABA centers without being bullied by the owners?
8. Can parents have access to their children’s ABA records without hesitations from ABA owners?
9. Can DHS assure the child is actually learning what is in his/her ITP and if not where do parents go for help or questions?
10. Can DHS make sure greedy providers are not prescribing a blanket 40 hours for 20 year old autistic or even a 15 year old? There is no research for intensive 40 hours of ABA at this age.
11. I have seen ABA providers tell me and other parents that we could not comment or suggest what our children should learn on the ITP (individual treatment plan), yet the Minn Statute that governs CTSS clearly states treatment should be child centered, family driven and culturally responsive. What happens when these blood sucking ABA providers refuse to follow that and discharge families that dare question their kids treatment programs? Think of it this way, IEP is funded the same means and method as ITP which are both Federal and State, yet parents have so much rights and responsibilities in IEP because the rules and polices are clear and MDE does a good job in assuring that. But for some reason, DHS is loose in ITP policies and family rights and responsibilities. Please change this so that as parents we are in the driver seat of what and how our kids learn because we know them best and their success or failure affects us the most. Our kids should be looked as children not as dollar signs by these blood sucking MN ABA providers. This must change. ABA therapy must be necessary, cost effective, family friendly and always child focused – period. Oh, and not 40 hours for zero to 21 years old or forever. There is no research for that – I assure you, I checked high and low for it.
Again, I am so grateful to Commissioner Jesson, Asst Comm Barry, Loren and Anne H for their support for the thousands of Minn autism families. And, I am personally thankful to DHS for always taking on the side of equality and fairness above all. In sum, Wall Street should have nothing in common with autism. And, ABA providers should not be making six figures to treat our kids when the cost is half or even 1/3 in other states. The fact that Minnesota Medicaid agency pays ABA therapy more than CA, WA or HI is based on greed not cost of living or medical necessity. In addition, it is not medically necessary to have multiple therapists at the same-time for the same child. No other state does this, so why does DHS allow these blood sucking ABA providers bully them. Finally, KEPRO needs training on what medical necessity is and what ABA research says before approving a blanket 40 hours for every child, that is insane and stupid.
DHS – you pay these providers, you inspect them, you certify them and you approve the payments. I ask you to please use common sense and compassion in this.
ABA cost in Minnesota article by Mpls Tribune.
Double standard in Minn ABA by Mpls Tribune.
How much ABA costs in other states.
IACC and services research for the past five years. (note, as a member of this Federal IACC services and treatment subcommittee and I’ve read every research that came out for the past five years, so I am not talking out of my you know what).
Above words do not reflect any committee, agency or candidate.
Idil – Somali Autism Mom & Minority Advocate