Monthly Archives: November 2016

Comments Off on KEPRO (under DHS) Authorizes ASD Children’s Treatments Based on Race and Ethnicity – Not kidding

Alright – so, the Minnesota Department of Human Services (DHS) is in charge of individuals with disabilities, the poor, and the elderly. Their core responsibility is to assure these vulnerable individuals are treated fairly, equally and get the services and support they need. DHS is funded partly by the state via state legislature and part by the federal government via CMS. It is a multi-billion dollar state agency that functions as a mini country.

DHS hires or contracts with Keystone Peer Review Organization (KEPRO). What they are supposed to do is review medical information for children that need autism therapy via the new ASD benefit EIDBI or the early intensive developmental behavior intervention. Sounds easy and straight so far, right? Not so fast.

Well – KEPRO reviewers decided to review, process, and authorize children’s medically necessary treatments….wait for it…. not in the order they are submitted to them but….wait for it…. in the order of the children’s race and ethnicity. I kid you not. When asked about that their informal response was “well – that would take a lot out of us because we would have to go into each child’s information to see their race and ethnicity, therefore because we are lazy and don’t do that, it was just a coincidence”. Right, and we are all stupid here. KEPRO received nine children’s treatment to review, of that nine 6 were Black and 3 were Non-Black. KEPRO processed and approved the three Non-Black kid’s treatments even though their information was submitted after the Black children’s information. For the six black kids – they denied and asked for more information they did not ask for the non-black kids even though all of the kid’s forms were filled the same way. I kid you not.

Please don’t tell me that is not blatant discrimination.

My take is that they are not lazy. In fact, they are very smart and shrewd – they just didn’t give the parents of those minority children the same credit and assumed their silly excuse would be bought. I for one am not buying that poor excuse.

This KEPRO is the same agency that has authorized services for ABA agencies like BDI for children whose ITPs were not even signed.

If it looks like a duck, walks like a duck, and authorizes like a duck – it is a freaking duck.

What KEPRO did was clearly subliminal racism and what DHS is doing afterward is even worse. A child with autism is a child with autism is a child with autism – irrespective of their race, ethnicity, or background. I am disgusted with KEPRO’s actions and I am appalled of DHS’ lack of action in this matter. I urge these parents to sue KEPRO and DHS because doing nothing will give them the green light to do it again and again.

The above words do not represent and candidate, agency, or committee.

Idil – Autism Mom & Advocate

Category: Autism Policy

Comments Off on Federal Autism Committee – IACC Picks a New Chair to lead them

Alright – So, Interagency Autism Coordinating Committee (IACC) appointed a new chair – Dr. Gordon who was recently hired to lead National Institute of Mental Health. Previous Director of NIMH, Dr. Insel and chair of IACC left to work at Google not too long ago. Dr. Insel by far is a rare scientist and leader. I have watched how he would deal with his critics and he almost reminded me of previous Commissioner Jesson of DHS. He never let them sweat him. He just focused on the light that was at the end of the tunnel. Brief history of what IACC is and what they do is – IACC has federal representatives who are usually the directors of federal agencies that have anything to do with autism, such as NIH, NIEH, NIMH, HRSA, CDC, CMS, FDA, U.S Dept of Education, U.S Dept of Defense, etc. It also has public members that are appointed by the U.S HHS. Secretary. I was lucky enough to have served the last cycle and appointed by Sec Sebelius.

This cycle of public members are equally great. IACC is charged with updating the national strategic plan for autism in the country and make recommendations to the Secretary of HHS, Congress and the administration. It is authorized by Congress, starting with the Combat Autism Act of 2006 and reauthorized by the Autism Cares Act of 2014.

I would encourage anyone that works in the field of autism or is parent/relative of an autistic individual to sign up in their list-serve to get updates of meetings which are open to the public and transparent per federal laws. I would also suggest anyone especially autism parents to send their questions and comments to IACC. They really do listen and validate parent concerns. I am the perfect example of that. IACC is where I first advocated at the federal level which as we all know now resulted so much attention and research for autism in the Somali community.

This time around – there are some extremely amazing researchers – actually everyone is really good, but Doctors like Shattuck, Odom, Kasari, Gerhardt, Rice, Lawler, Klin, Lord, Buie and Wiggins – I mean seriously – does it get better than that. These are the crem de la  crem of autism research in this country and probably in the world. Of course, members Dawson & Mandell and Harris from CMS simply rock in my humble little opinion.

Below is the announcement from IACC about Dr. Gordon. I wish him and everyone at IACC well this cycle, I am sure they will recommend research that covers the current gap. I think research that looks in policing and autism, nonverbal autism, safety, GI issues and access to services/treatments for minority autistic kids is what we need.

Dr. Joshua Gordon Appointed as New IACC Chair

photo of Joshua Gordon

Dr. Joshua Gordon, who was appointed as the Director of the National Institute of Mental Health (NIMH) in September 2016, has been appointed as the Chair of Interagency Autism Coordinating Committee (IACC). Prior to joining the NIH, Dr. Gordon served on the faculty of Columbia University’s Department of Psychiatry from 2014-2016, where he used his training in psychiatry and neuroscience to combine laboratory-based studies examining mouse models of human psychiatric illness with clinical practice and teaching in general psychiatry. His expertise in neurophysiology, or the study of patterns of electrical activity in the brain that underlie behavior, allowed him to investigate features of the neural circuitry that underlie mental health conditions such as schizophrenia, anxiety, and depression. He earned his B.A. degree in Biology from Washington University in St. Louis, and his M.D./Ph.D. from the University of California at San Francisco. He did his residency and fellowship in Psychiatry at Columbia University/NYS Psychiatric Institute. While teaching and conducting research at Columbia University, he also directed Neuroscience Education for Columbia’s Psychiatric Residency Training Program. Dr. Gordon has received several awards and grants for his research, including an IMHRO Rising Star Award, two NARSAD Young Investigator awards, an APA-GlaxoSmithKline Young Faculty award, and research grants from the National Institute of Mental Health. In his role as NIMH Director, Dr. Gordon oversees the lead federal agency for research on mental health disorders and conditions. With an annual budget of approximately $1.5 billion, NIMH supports more than 2,000 research grants and contracts at universities and other institutions across the country and overseas. In addition, the NIMH intramural research program supports approximately 300 scientists who work in laboratories at NIH. The mission of the NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery and cure.

As usual, above words do not represent any committee, agency candidate.
Idil – Autism Mom & Advocate