Alright – so, how this new autism benefit in Minnesota and at the Federal level came about is really no secret because we kept blogging and asking media coverage throughout the years.
Sadly though not surprisingly, some attention hungry MN ABA providers or as I like to call them “blood sucking, greedy and racist” not all of them are crying a river because ooohhh, they did not get credit.
First, let’s get one thing clear – I have never ever ever ever seen any of these blood suckers fight, advocate, testify or ask anyone why Managed care low income autism families were being denied ABA, Really never. The only time they got involved with this benefit is when their private market coverage failed and ours passed in 2013 and during HSAC process. and that was only because they wanted to tell DHS how good of a job they are doing with their families in quality of care, supervision of staff, family driven services, child centered therapy blah blah. Oh, how can I put this diplomatically, for them to say that is like George Wallace saying I care about civil rights or being inclusive. Don’t get me wrong, at least Wallace said it loud and proud “segregation now and segregation tomorrow”. They do it here with a flavor of Minnesota nice delivered with a hint of sugar. They mostly do it subliminally in their intake process, their discharge process, their supervision process and their overall way in how they teach and deal with low income and minority autism kids/families.
Now, all of the sudden they want to take credit for low income managed care kids being able to get ABA. Are you bleeping kidding me.
This would be all too funny, if it wasn’t sadly true. In fact, even now they still never talk about or mention how many managed care kids they serve or care to serve. To them it is about the bottom dollar (not all of them). I remember back in 2013 session in one of the House committee where I must have done good in testifying against their 25 million dollar private market autism bill while they wanted to reduce the 12 million dollar bill for the low income autism kids where they recommended MA kids have an age cap of seven, while wealthier private income kids had no age cap, one of them came up to me after words and said “what difference did it make if ABA was called ABA or skills training”. I told him – it made a difference because the system can not discriminate against low income kids who are disproportionately minorities and are getting screwed by the current policy.
Now, they want to claim credit – again are you bleeping kidding. My response is “boohoo and cry me a river”. Better yet, buy Justin Timberlake’s cry me a river CD and maybe some blues jazz and really cry.
According to public data – none of these blood suckers have managed care (Ucare, Medica, etc) kids and do any intensive ABA therapy because they still don’t give a flying hoot about how our kids services are funded. Also, according to public data the following is what they were reimbursed for by the state Medicaid agency and their racial data for the children they serve. My take is most are just greedy bastards, some are simply racist. Luckily, there are few good ones.
This is 2013 and 2014 data (note 2014 reimbursement not complete yet)
Behavioral Dimensions – $6,879,362 – total kids 249, minority 33
Helena – $1,662.507, total kids 151, Minority 67 (Thanks Helena!)
PIE $1,373,11 – total kids 45, minority 10
Autism Matters $224,569, total kids 15, minority 2 (come on Tara!)
Minnesota Autism Center $34,728,536, total kids 405, minority 96 – (the most minority kids, but sadly most are forced to do 40 hours or hit the road. MAC also discharges children whose parents ask for quality of care or less hours who are mostly minorities, my son being one of those dozens of kids. MAC’s philosophy is 40 hours of center based or hit the road which is a contradiction to CTSS statute of child centered, family driven and culturally responsive. In fact, even if the child has objective 2nd medical recommendation of less than 40 hours, MAC still refuses to listen and discharges the child and family from treatment – usually abruptly)
Behavior Therapy Solutions of MN $2,378,348, total kids 148, minority kids 41 (not bad!)
Holland Center $1,968,126, total kids 43, minority kids 16 for both years, (not bad)
Home and Community Options $321,350, total kids 29, minority kids 2 (not good)
Lazarus $1,532,557, total kids 28, minority kids 11 total for 13 and 14 years (not bad)
RCA in Rochester $4,740,430, total kids 77, minority kids 18 for both years (not bad)
MEAP $1,342,325, total kids 30, minority kids 3 Asians and ZERO Black (I would say they have a problem with diversity and borderline racism – my opinion)
Lovaas $4,607,339, total kids 44, minority kids 8 total for both years (it seems to me there is a problem with diversity staff and kids here – my humble little opinion)
St. Davids $2,068,152, total kids 236, minority kids 85 for both years (they seem to care about diversity the most and even opened a center for Somali autism given the crises in our community – Thanks much!)
As you can see the biggest ABA provider is MAC and has been refunded over $34 million dollars in just two years. Since this is a publicly funded treatment – DHS must have a better oversight for intake, discharge, quality of care, patient rights, child progress, family input and everything else to assure safety, quality and what is best of the child/family is always done.
My questions and gentle friendly suggestions to DHS which is the agency that is suppose to assure our kids learn and progress as well as assure treatment is always child centered which means it should be based on research and science, and the family/parents have rights in what and how their child’s treatment is going would be;
1. Please make sure there is some oversight and accountability in quality of the treatment and intensity of hours is appropriate for the child and family. It can not be the provider’s way or the highway.
2. The treatments are culturally appropriate meaning our holidays are respected and we are not told to bring our kids on our religious or cultural holidays.
3. Families/parents have a system in place to make their concerns/complaints should they arise and a system to assure continuence of care during that time for the child.
4. Are our center kids safe, if they get hurt – does it get reported to DHS, are parents made aware of and given explanation, can they complain if their child gets hurt under the care of these ABA providers and what is that process for the family/parent?
5. If a child is 15 and has done 10 years of ABA in center and still not even toilet trained, nonverbal, etc – can you prevent that. I see this a lot whereby providers just keep the child in center based services to age 10 or even 18 for 40 hours a week then kick the child out after they age out, yet the child still has significant needs. What the hell has this ABA provider been doing for this child and family for the past years? This is both cruel and heartbreaking. DHS must assure kids have a baseline of their skills and an objective eval to see progress. If not, please don’t keep funding it. Ask for accountability of the treatment.
6. If a parent/family has concerns in the care and treatment plan of their child, is there a system set where they can freely and without being retaliated against speak up and give their input. Often ABA providers label those of us that ask what our kids are learning (difficult, hostile, hard to please, yada yada). In other words, if we keep our mouth shut, ABA companies keep our kids then drop them after they age out and they can no longer handle or DHS will no longer pay. There is no measure of the quality of treatment, assuring progress is being made, parents are the table of their children’s treatment plan.
This is when most ABA owners come and usually ask DHS for less rules and regulations so they can continue business as usual. This is no longer acceptable. DHS must treat these ABA providers just like it treats their other publicly funded providers, i.e child care centers, state hospitals, etc. Maybe even more oversight, because our kids with ASD can’t always tell us what happened or did not happen in these centers that are usually small cubicles.
Finally, my free advice to these ABA owners that seem to be self righteous, arrogant yet ignorant to take a flying leap and stop claiming credit for staring this new ASD benefit to assure managed care and fee for service kids get equal access to ABA therapy. You had nothing to do with when I started this and you still have no desire to take managed care kids or how their treatment will be paid. Maybe one day I will write a book about my experience in this new policy and with many of these blood sucking ABA providers in Minnesota. Autism by itself is hard and challenging – add racism, greed, bullying, arrogance, self righteousness and ignorance makes it unbearable and painful to the soul.
Above words do not reflect any committee, agency or candidate
Idil – Somali Autism Mom & Minority Advocate