Monthly Archives: January 2016

Comments Off on Minnesota Department of Human Services Issues a Corrective Action against Minnesota Autism Center

Alright – so, finally Minnesota Department of Human Services (DHS) gets a backbone and stands up for children with autism and their families. DHS issued a corrective action against Minnesota Autism Center (MAC) few weeks ago for how they discharge and abuse children with autism and their families.

From what I understand this is first such action from DHS. For years and even over a decade, MAC has discharged children for any reason and for everything under the sun. MAC’s director Ms. Marshall who is an attorney by training would just call families and tell them “come pick up your child, MAC is discharging him”, or send a letter to a family telling them to not bother bringing their child for therapy again, or just send a text or email to a family and tell them their child’s services are done. I kid you not, Ms. Marshall who is not trained in autism therapy would just either just do these things or dictate one of her spineless mental health professionals to do it.

Meanwhile, children would suffer because their medically necessary treatments ended abruptly and parents would be in despair and frustrated. Sadly, when parents contacted DHS to do something nothing was ever done. DHS told many families there was nothing they could do. The problem with that statement was everything. DHS funds, certifies and audits MAC and should’ve have done something years ago. But as they say late is better than never.

Finally, DHS stood up to MAC and told them how they discharged children from their medically necessary treatments was wrong. They were not in complaint with state statute under CTSS of child centered, family friendly and culturally responsive. Furthermore, MAC even violated some of their own policy. This of course was Mozart music to my ears as the Elizabeth Tylor of ABA, I am sick and tired of being bullied, harassed and intimated by Minn ABA providers. It is time to stand up for kids with autism and their families.

MAC is now required to submit the children they discharge and their reason including parental involvement. In other words, Ms. Marshall can no longer just call a parent and bully them or discharge their child because she felt like it. Oh, and if a parent wants to see their child in one of their centers, they can do that whereas before parents had to make an appointment to see their children in therapy. Imagine that, what the heck is MAC hiding that parents can’t see their own kids in therapy in a publicly funded program – Medicaid.

If you are a parent whose child was discharged by MAC and you either disagree or had no idea, please contact DHS autism team and let them know.

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

Idil – Autism Mom & Minority Advocate

Category: Autism Policy

Comments Off on IACC’s 2nd Meeting on January 12, 2016 – The agenda and my take

Federal Interagency Autism Coordinating met for the second time under the new Autism Cares Act couple of weeks ago on Jan 12, 2016. Their first meeting was more about introductions and going over their charge which is to update the Federal autism strategic plan, to get input from the public and go over autism research for the past couple of years since the last update.

Director of NIH, Dr. Francis came to the first meeting and said a lot of nice thoughtful things. Of course, I like Dr. Francis, so maybe I am a little bias. My favorite part was from a public member John R who summarized public comments. John is one of those people that can find positive in any situation while acknowledging all concerns. John said what most autism parents are feeling in the country and how most think that the Federal government is moving too slow in showing any significant progress.

He also talked about how slow research moves and how far we have come including the good things IACC has done so far, especially under previous chair and my all time favorite autism expert – Dr. Insel.

As usual, there was some that were upset that Dr. Francis only stayed few minutes. I think this assessment is unfair. Dr. Francis is the director of NIH not just autism. The fact that he gave our issue time out of his full day speaks volume to NIH’s commitment to autism. In addition, what the heck should he stay for. He is updated and knows what is going on. Then there was those that were mad because HHS Secretary Burwell did not come. I remember when previous Sec Sebelius came to IACC, the same folks got mad. Therefore, it is really hard to please everyone in the autism community. What I was mostly disappointed in the first and 2nd meeting was the lack of anyone mentioning autism and racial disparity.

I hope the new committee members keep the momentum we built and focus on recommending research that tells us how to decrease racial disparity, not the usual research that says “yes there is autism racial disparity in diagnosis, access to services and resources”. We already know that.

The new committee is not as diverse as I would’ve liked. I think the previous one under Sec Sebelius was much more diverse. But it is too early to judge them. We will have wait and see their recommendations and outcome.

While it is expensive and impossible for many autism parents to go to DC and take part in these meetings, I highly recommend sending your comments, questions and suggestions. They do listen and validate them and I speak from experience having had my comments validated back in 2010 and 2011 regarding the Somali autism prevalence research and CMS’ autism therapy coverage in 2014. Everyone’s voice matters to IACC and they represent or at least try to speak for everyone and in every issue relating to autism in the country. Below was their agenda for the last meeting.

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

Idil – Somali Autism Mom & Minority Advocate

Meeting of the Interagency Autism Coordinating Committee

Tuesday, January 12, 2016
9:00 am to 5:00 pm ET

National Institutes of Health
31 Center Drive
Building 31, C Wing, 6th Floor, Conference Room 6
Bethesda, MD 20892

Time Event
  9:00 AM Welcome, Introductions, Roll Call and Approval of Minutes

Bruce Cuthbert, Ph.D.
Acting Director, NIMH and Chair, IACC

Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination, National Institute of Mental Health (NIMH) and Executive Secretary, IACC

  9:15 Science Update

Bruce Cuthbert, Ph.D.
Acting Director, NIMH and Chair, IACC

  9:30 The Autism Biomarkers Consortium for Clinical Trials

James C. McPartland, Ph.D.
Associate Professor of Child Psychiatry and Psychology, Yale Child Study Center
Director, Yale Developmental Disabilities Clinic

 10:15 National-Level Outcomes of Transition-Age Youth on the Autism Spectrum

Anne Roux, M.P.H., M.A.
Research Scientist, Life Course Outcomes Research Program
A.J. Drexel Autism Institute, Drexel University

 11:00 Morning Break
 11:15 Committee Business

Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination, National Institute of Mental Health (NIMH) and Executive Secretary, IACC

Bruce Cuthbert, Ph.D.
Acting Director, NIMH and Chair, IACC

  • IACC Summary of Advances
  • IACC Strategic Plan Update
 12:15 PM Lunch
  1:15 Oral Public Comment Session
  1:45 IACC Committee Member Discussion of Public Comments
  2:15 Research Domain Criteria (RDoC): An Overview

Bruce Cuthbert, Ph.D.
Acting Director, NIMH and Chair, IACC

  2:45 Afternoon Break
  3:00 Autism Screening Panel

Daniel L. Coury, M.D.
Chief, Section of Developmental and Behavioral Pediatrics
Nationwide Children’s Hospital
Professor of Clinical Pediatrics and Psychiatry
The Ohio State University College of Medicine

David Grossman, M.D., M.P.H.
Vice-Chairperson, U.S. Preventive Services Task Force
Senior Investigator, Group Health Research Institute
Medical Director, Population Health Strategy
Group Health

Karen Pierce, Ph.D.
Associate Professor, Department of Neurosciences
University of California, San Diego (UCSD)
Co-Director, Autism Center, UCSD

Diana L. Robins, Ph.D.
Research Program Area Leader, Early Detection and Intervention for Autism Spectrum Disorder (ASD)
Associate Professor, A.J. Drexel Autism Institute

Amy M. Wetherby, Ph.D.
Distinguished Research Professor, Department of Clinical Sciences, College of Medicine
L.L. Schendel Professor of Communication Science & Disorders
Director, Autism Institute in the College of Medicine
Florida State University

  4:15 Round Robin

David Amaral, Ph.D.
Distinguished Professor, Department of Psychiatry & Behavioral Sciences
University of California, Davis (UC)
Research Director, UC Davis MIND Institute

Melissa L. Harris
Acting Deputy Director
Disabled and Elderly Health Programs Group
Center for Medicare and CHIP Services
Centers for Medicare and Medicaid Services

  4:45 Closing Remarks
  5:00 Adjournment

Schedule is subject to change. Meeting may end prior to or later than 5:00 PM depending on the needs of the committee. For more information on upcoming events, please see

Next IACC Full Committee Meeting:

  • Tuesday, April 19, 2016 – Building 31, NIH Campus, Bethesda, MD