Monthly Archives: November 2015

Alright – so, According to (Gerhardt & Lainer, 2011) a looming crises of unprecedented magnitude is coming for adults with autism, their families, and the ill prepared and underfunded adult system charged with meeting their needs. Sound stressful and scary, right? that is because it is.

To take advantage of this crises and our state Medicaid agency’s (DHS) lack of oversight and accountability for ABA providers Minnesota Autism Center (MAC) decided to house teenagers to adults (25 to 35 individuals) with autism in their Minnetonka location center. This center is not evaluated or checked by anyone at DHS to assure kids/adults there are learning appropriate functional skills that are transferrable to their communities. DHS has no idea how many individuals go there, their ages, what they are learning or is being billed to them, etc and bleeping etc.

From what I understand from staff that left there or are currently there – Ms. Marshall just collects millions of dollars from DHS with no accountability or oversight by DHS or KEPRO (the agency whose responsibility is to assure they only approve medically necessary treatments, but sadly approve everything with no questions or hesitations). Allegedly, there are fake beds, fake laundry rooms and fake kitchens which is all good except there are no generalizations or community based interventions. In other words, it is all good and dandy if a teenager with ASD can make the fake bed in the center, but it is useless and waste of time and money if they can’t make their own bed or do their own laundry.

Again, I blame our Medicaid agency and KEPRO for failing to even to do a site visit to the hell hole (my humble little opinion) Minnetonka MAC center. According to research, the vast majority of young adults with autism are unemployed. Yet, DHS wastes millions of dollars on places like this MAC Minnetonka center which are just expensive and fruitless.

When will DHS wake the bleeping up and actually do its responsibility of assuring people with autism are treated well, respected like human beings and taught functional and appropriate skills with family input. WHEN??????

When will the likes of Ms. Kathryn Marshall stop bullying and harassing autism children and families. It won’t happen unless DHS steps in or families start taking legal actions.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, Minnesota Autism Center (MAC) does applied behavior analysis (ABA) for hundreds of children annually and has made millions of dollars doing it. This is mostly due to the fact that the owners  Mr. Ron Carey, a local politician and Kathryn Marshall, an attorney force their licensed mental health professionals to recommend 40 hours for most of their clients. Most center kids if not all are 40 hours a week or eight hours a day for every child. There ain’t nothing individualized about that approach no matter how they explain it.

Let’s put this into context – a licensed mental health professional’s clinical “judgement” must be based on just that their clinical judgement along with the needs of the child and the family. This is not what happens at MAC. For example, we know from tons of autism research that ABA works best for young children when done intensely. There is no research anywhere in the world for a blanket 40 hours per week for every center kid from 2 to 20 years old, and I would know given that I was a member of IACC (the federal committee that literally reads, goes through all autism research and makes recommendations to Congress and U.S HHS Secretary).

This body of evidence or research does not seem to drive MAC’s clinical or so called clinical team. Instead they are driven by whatever recommendations Mr. Carey or Ms. Marshall say. I have seen many autism parents tell me their child was discharged because MAC demanded 40 hours. I have seen families that Ms. Marshall who is not a licensed mental health professional called and told them to “come pick up your child now”. I have seen families that MAC sent discharge certified letters to because their child was having a behavior in a behavior clinic mind you. This is like an ophthalmologist discharging a patient for having eye problems. I have seen parents cry in despair in front of DHS staff and nothing happens. I have seen children suffer because of what MAC has done and DHS does nothing. I have seen so many problems with MAC’s diluted and greed based clinical judgement and DHS again does nothing. Sooner or later, families will start suing the state agency whose responsibility is to assure children with disabilities including autism are not bullied or harassed.

Next time you hear this treatment plan is based on my clinical judgement – please be aware whose judgement it really is. MAC has been doing this for years and years so far no one seems to correct it permanently. DHS just makes deals and negotiates with them. WTF?

I have seen many mental health professionals and therapist that worked at MAC and asked why they kept recommending an insane amount of hours for almost every child especially in MAC centers. Most of them replied “if they didn’t – they would be fired”.  Some actually were fired by Ms. Marshall or Mr. Carey because of it.

DHS fails our children with autism again. Instead of asking for an objective evaluation for every child to assure quality of medical care that is cost effective and based on child and family needs – they just give MAC a blank check with no oversight or accountability. As a result, many children are discharged if parents don’t comply with 40 hours of ABA and suffer as a result. Imagine if DHS actually started talking to some of those licensed mental health professionals that left or were fired from MAC, abandoned families and advocates to get to the bottom of this and finally address it.

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

Idil – Somali Autism Mom & Minority Advocate

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

Alright – so, if you advocate or have a child with autism then you understand everything about autism from intervention to services to research is about politics. Most autism policies are written by state legislatures or congress. Sometimes policies are written or implemented by state and federal agency leaders who are often appointed by politicians. In sum, autism is driven or not by politics and politicians.

Few years ago, I was advocating in Congress for the Combating Autism Act (now Autism Cares Act). I remember I wanted our state of Minnesota to be a state that every congress member – all eight and both senators voted and supported this legislation. So, I decided to contact all of them and ask. If you can believe it I got them all to support Combating Autism Act and vote for. The only one that gave me a little hard time was Rep Cravaack. I think his office told me he supported the bill literally the morning of the vote.

At any rate, I also contacted Speaker Boehner’s office to ask if they can put it up for a vote. And, to my pleasant surprise it was probably one of the easiest political office I have advocated. It took maybe one phone call and one email and I even got the letter below which I did not ask. His staff was so pleasant to deal with and knew their stuff inside out. I didn’t have to explain anything to them. They just got it and to get a letter from the Speaker of America’s political house – well that was a bonus and an honor.

I know the autism community will miss Speaker Boehner for his contributions and compassionate. Below is Speaker Boehner’s letter to me. I wish him luck in his next chapter in which he recently said “he can’t wait to walk to Star Bucks by himself to get a cup of coffee”.

Dear ldil:

Thank you for contacting me regarding autism care and research. I appreciate hearing from you.

As you know, autism is a complex developmental disorder affecting many people today. This life-long disorder deprives children of many abilities, such as interacting with others in ordinary ways, understanding and communicating with others, and having normal reasoning skills. The number of people afflicted with   the disorder grows every day with no known cure or cause. Statistics state that nearly one in every 110 children now live with autism. This disorder leaves permanent effects on the children and their families.

The lnteragency Autism Coordinating Committee IACC) coordinates efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). The IACC mission is to: 1) facilitate the efficient and effective exchange of information on ASD activities among the member agencies; 2) coordinate ASD-related activities; and 3) increase public  understanding  of the member agencies’ activities,  programs,  policies, and research by providing a public forum for discussions related to ASD research, screening,  education,  and interventions.

You may be interested to know that funding for autism programs at the Centers for  Disease Control and Prevention  (CDC)  has increased from  less than $300,000  in 1995 to $22.1 million in 2011. During that same period autism  funding at the National Institutes of Health (NIH) increased from $10.5 million in 1995 to an estimated $160 million in 2011. In addition, the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense (DoD) supports research on a variety of diseases and disorders. The program administers programs funding on autism, multiple sclerosis, breast cancer, prostate cancer, ovarian cancer, chronic myelogenous leukemia, neurofibromatosis,  and tuberous  sclerosis  research,  among others.  From Fiscal Year 1992 (FY92) through FY10, CDMRP  has received $6 billion in federal funding  for  research. CDMRP is funded at $394.4 million for FY11, including $6.4 million for the autism research program. From FY07 through FY10, the autism research program has received $29.9 million in federal funding.

Representative Chris Smith (R-NJ) has sponsored a bill to confront the challenges of autism, H.R. 2005, the Combating Autism Reauthorization Act of 2011. This legislation would reauthorize the Combating Autism Act for an additional three years, through September 30, 2014. This bill has been referred to the House Committee on Energy and Commerce, who held a legislative hearing in July. As this bill moves through the Committee, rest assured that I will keep your support for autism care and research in mind.

Thank you again for contacting me with your thoughts. Please don’t hesitate to inform me of your concerns in the future. To sign up for email updates, I invite you to visit my website at http://johnboehner.house.gov .

Sincerely,

John A. Boehner

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

Idil – Somali Autism Mom & Minority Advocate