Monthly Archives: October 2015

Comments Off on U.S HHS Secretary Burwell Announces New IACC Members

Alright – so, U.S Health and Human Services Secretary has announced new members for Interagency Autism Coordinating Committee (IACC). Autism Cares Act (used to be Combat Autism Act) passed Congress over a year ago which is where IACC is under. IACC is a Federal autism committee that has federal and public representatives to update and write a national strategic plan for autism which is sent to the U.S HHS Secretary and Congress.

It is where most of the country’s autism research, services and resources allocation ideas come from. I was a member in last IACC committee and was really hoping that we get another Minnesotan appointed. Sadly, as you can see the list below there is none. However, two of my favorite autism researchers whom I had the pleasure of serving with in the last committee were appointed. Dr. Mandell and Dr. Dawson are new and previous committee members. Congrats to them and everyone else. I wish you luck and look forward to hearing your recommendations and your work in this fun but complex task. So many autism children and families depend on your voice, expertise and skills. I know you will not disappoint them.

My friendly advice to you all would be relax, breathe, never take what parents say personally and always vote based on facts, your experience and expertise.

The public members appointed by Secretary Burwell to serve on the renewed IACC are:

David Amaral, Ph.D.

Dr. David Amaral is a new public member of the IACC. He is a Professor of Psychiatry, Behavioral Sciences and Neuroscience at the University of California, Davis. He is also Beneto Foundation Chair and Founding Research Director of the UC Davis MIND (Medical Investigation of Neurodevelopmental Disorders) Institute, and Director of the Autism BrainNet. Dr. Amaral conducts research on the neurobiology of ASD. He received a joint Ph.D. in psychology and neurobiology from the University of Rochester and carried out postdoctoral work at Washington University in neuroanatomy.

James Ball, Ed.D., B.C.B.A.-D.

Dr. Jim Ball has served on the IACC as a public member since 2012. He is a Board Certified Behavior Analyst (BCBA-D) and President and CEO of JB Autism Consulting. He has worked in the autism field for more than 25 years, providing educational, employment, and residential services to children and adults affected with autism. He is a Board member of the Autism Society’s Board of Directors and is currently the Chair of the National Board. He received his Doctor of Education degree from Nova Southeastern University in Fort Lauderdale, Florida.

Samantha Crane, J.D.

Ms. Samantha Crane is a new public member of the IACC. She is Legal Director and Director of Public Policy at the Autistic Self Advocacy Network (ASAN) and an autistic self-advocate. Ms. Crane previously served as staff attorney at the Bazelon Center of Mental Health Law, focusing on enforcing the right to community integration as established by the Supreme Court in Olmstead v. L.C.. Ms. Crane holds a B.A. from Swarthmore College, with high honors, in Psychology, and she received her J.D. degree from Harvard Law School.

Geraldine Dawson, Ph.D.

Dr. Geraldine Dawson has served on the IACC as a public member since 2012. She is a Professor of Psychiatry and Behavioral Sciences in the Duke School of Medicine and a faculty member of the Duke Institute for Brain Sciences. Dr. Dawson also is Director of the Duke Center for Autism and Brain Development and President of the International Society for Autism Research. Dr. Dawson is a licensed clinical psychologist and researcher who has published extensively on ASD, focusing on early detection, intervention, and early brain development. She received her Ph.D. in Developmental Psychology with a minor in Child Clinical Psychology from the University of Washington and was a postdoctoral fellow at the University of California at Los Angeles.

Amy Goodman, M.A.

Ms. Amy Goodman is a new public member of the IACC. She is the Director of the Arc of the United States’ Autism NOW Resource and Information Center, which serves the needs of individuals with autism and their families. She is a self-advocate for individuals on the autism spectrum and holds a master’s degree in special education from Marshall University in West Virginia.

Shannon Haworth, M.A.

Ms. Shannon Haworth is a new public member of the IACC. She is the Public Health Program Manager for the Public Health team at Association of University Centers on Disabilities (AUCD) and a parent of a child on the autism spectrum. She has a master’s degree in Applied Behavior Analysis and a graduate certificate in Autism from Ball State University. She has also earned a Post Baccalaureate Graduate Certificate in Disability Leadership from Virginia Commonwealth University, is currently a doctoral candidate (DrPH) studying Public Health at Walden University, and is a certified Early Intervention Specialist for the state of Virginia.

David Mandell, Sc.D.

Dr. David Mandell has served on the IACC as a public member since 2012. He is an Associate Professor of Psychiatry and Pediatrics at the University of Pennsylvania’s School of Medicine. He is a health services researcher and psychiatric epidemiologist whose work focuses on identifying the best ways to organize, finance and deliver services to children with autism and other psychiatric and developmental disabilities. Dr. Mandell holds a Bachelor of Arts in psychology from Columbia University and a Doctor of Science from the Johns Hopkins School of Hygiene and Public Health.

Brian Parnell, M.S.W., C.S.W.

Mr. Brian Parnell is a new public member of the IACC. He has led a distinguished career in child welfare and disabilities services and as an administrator of public and nonprofit agencies, having supervised and managed social service programs for more than 20 years. Mr. Parnell currently works at the Utah Division of Services for People with Disabilities, Department of Human Services, and helped develop Utah’s Medicaid Autism Waiver program. Mr. Parnell is a parent of seven children, three of whom are on the autism spectrum.

Kevin Pelphrey, Ph.D.

Dr. Kevin Pelphrey is a new public member of the IACC. He is the Harris Professor in the Child Study Center and Professor of Psychology at Yale University and Director of the Yale Center for Translational Developmental Neuroscience. He also is the father of two children on the autism spectrum. Dr. Pelphrey’s research focuses on the development of brain mechanisms for social cognition in children with and without ASD. He also is the Principal Investigator for a federally-funded multisite Autism Center for Excellence, “Multimodal Developmental Neurogenetics of Females with ASD.” Dr. Pelphrey received his Ph.D. in Psychology from the University of North Carolina at Chapel Hill.

Edlyn Peña, Ph.D.

Dr. Edlyn Peña is a new public member of the IACC. She is an Assistant Professor of Higher Education Leadership at California Lutheran University (CLU) and is a parent of a child on the autism spectrum. Dr. Peña’s research focuses on social justice issues for ethnic/racial minorities and students with autism and other developmental disabilities in higher education. She earned her Ph.D. in Education with a concentration in Higher Education from the University of Southern California.

Louis Reichardt, Ph.D.

Dr. Louis Reichardt is a new member of the IACC. He is the Director of the Simons Foundation Autism Research Initiative (SFARI), whose goal is to improve the understanding, diagnosis, and treatment of ASD by funding innovative, high quality research. Prior to this, he was a Professor of Physiology and Biochemistry & Biophysics at the University of California, San Francisco, where he directed its neuroscience graduate program and Herbert W. Boyer Program in Biological Sciences. His research has focused on neurotrophins, a family of proteins that play a key role in brain development and function. Dr. Reichardt was a Fulbright scholar and earned his undergraduate degree from Harvard University and a Ph.D. in Biochemistry from Stanford University.

Robert Ring, Ph.D.

Dr. Robert Ring has served on the IACC as a public member since 2014. He is the Chief Science Officer (CSO) for Autism Speaks, the largest autism science and advocacy organization in the U.S. Dr. Ring is responsible for leading the science program at Autism Speaks, which features a diverse portfolio of research investments targeting medical research on the underlying biology of ASD, diagnosis, treatment, etiology, public health, and innovative technologies. Dr. Ring holds adjunct faculty appointments in the Department of Psychiatry at Mount Sinai School of Medicine (New York) and the Department of Pharmacology and Physiology at Drexel University College of Medicine (Philadelphia). He holds a Ph.D. in Molecular Neurobiology from City of Hope National Medical Center in Southern California.

John Elder Robison

Mr. John Elder Robison has served on the IACC as a public member since 2012. He is the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia, where he teaches courses on neurodiversity and living with autism. He is an autistic adult who is best known for working to increase public understanding of autism, and he is the author of several popular books about living life with autism, including Look Me in the Eye, My Life with Asperger’s, Be Different: Adventures of a Free-Range Aspergian, and Raising Cubby.

Alison Singer, M.B.A.

Ms. Alison Singer has served on the IACC as a public member since 2007. She is Co-Founder and President of the Autism Science Foundation, a not-for-profit organization launched in April 2009 to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing, and disseminating autism research. Ms. Singer is the mother of a daughter with autism and legal guardian of her adult brother with autism. Ms. Singer graduated magna cum laude from Yale University with a B.A. in Economics and has an M.B.A. from Harvard Business School.

Julie Lounds Taylor, Ph.D.

Dr. Julie Lounds Taylor is a new public member of the IACC. Dr. Taylor is an assistant professor of Pediatrics and Special Education at Vanderbilt University and an Investigator at the Vanderbilt Kennedy Center. Her research focuses on factors that promote a positive transition to adulthood for individuals with ASD and their families, as well as the impact of having a sibling with an intellectual or developmental disability. She has published research on a variety of autism and disability services-related issues, including sex and gender differences, peer victimization, transition planning, secondary education and vocational training, employment, and daily life skills for people on the autism spectrum. Dr. Taylor earned her Ph.D. in developmental psychology at the University of Notre Dame.
There will also be a new chair as Dr. Insel our previous chair and director of NIMH has left.
Here is more information on IACC, what it does and has done over the years.
Above words do not represent any agency, committee or candidate.
Idil – Somali Autism Mom and Minority Advocate

Category: Autism Policy

Comments Off on A Message to the Owner of WMLC – BACK OFF of Autism & Our Issues

Alright – so, there was another autism training from Minnesota Department of Human Services or the state Medicaid agency on the new ASD benefit. Don’t worry- this blog is not about the ins and outs of that training. It is rather something I usually don’t blog about or even notice.

I usually don’t notice providers or agencies that are not directly related to autism therapy. At this DHS meeting yesterday – the owner of WMLC came. Personally, I don’t know her or have never seen her in any autism meeting, training or advocacy. Not really sure why she was there since WMLC does not provide ABA or developmental therapy per se. Maybe to be just annoying to those of us living with autism daily.

At any rate, as the trainer was explaining (not very good) about how the ITP must reflect the CMDE, I asked what happens if the treating provider does not follow the recommendations of the comprehensive evaluation or the family’s culture and values. On one side DHS said “they have to follow” then on the other side they said “they can just say we wont because it is different than our clinical judgement”. Sound confusing – imagine how I felt.

Then some irate woman screams from the back and says to me “if I keep asking about this question or about family culture values”, she was going to leave the training.  Of course, my response was bye and have a nice day after you leave. After words, I looked up her company and it is no surprise they had no person of color in their site and from what I have been able to gather so far don’t take kids with autism on the severe end. In other words, they are very selective in who they serve. Therefore, it is no surprise that she thought talking or asking questions about diversity and equity were wrong in a public meeting given by a public state agency.

After I left this training – I called one of my friends who happens to be African American and told him what happened. I also told him how when there was a different person asked about billing questions even though this was only about CMDE and ITP – there was change in the body language, tone of voice, and no one labeled this person difficult or disruptive. Yet, God forbid if we ask diversity or equity or even parent/child rights questions – we are labeled angry, emotional, difficult and disruptive. He said “Idil – aren’t you used to this by now and isn’t that your middle name from the state legislature”. Lol, I laughed and felt better because that is exactly what we are called anytime we ask or demand equity.

He said something else that prompted me to write this post, “there is high level of civilized racism in Minnesota which is why it has the highest racial inequity in health, education, housing and employment for minorities in particular for African Americans”.

Um, that is true. Then I asked him so what now and how do we deal with this Minnesota nice AKA passive aggressive AKA civilized racism. He said “we just have to accept it and not worry about it”. This I disagree and here is why;

First of all, we should never ever ever accept racism or bias treatment even if it is delivered nicely or subliminally because that will only enhance and maintain that behavior. 2ndly, We have to fight effectively and relentlessly against it through mind over matter and look at our fight or advocacy as energizing and fulfilling or we will get wear down and decades from now we will still be saying the same thing.

Now, there is not much that I really care about except autism which is the first thing I think about in the morning and the last thing at night.

My message to the annoying owner of WMLC is back off of autism and our issue. We have zero desire to tolerate your toddler behavior and meltdowns. Next time you come to an autism meeting, workshop or training – we expect you will keep your rude behavior to yourself.

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

Idil – Somali Autism Mom & Minority Advocate

Category: My two cents

Comments Off on MN DHS Completely Alters Autism Legislation – Stands with Business Providers and Throws Kids/Families under the bus

Alright – so, First let’s describe what Minnesota Department of Human Services or the state Medicaid agency’s responsibilities are; They are suppose to protect and help low income Minnesotans and people with disabilities including autism. In other words, DHS is suppose to be on the side of the state’s vulnerable population.

Today, in one of their kazillian provider meetings – they did completely the opposite of their responsibility and obligations. Let’s remember while Minnesota autism therapy providers specifically ABA had more meetings and trainings than I can count, autism families had almost none, yet this legislation was and is suppose to be for and about autism children and their families.

Today was probably the worst meeting/training I have ever seen DHS conduct for autism. To start with John Z is no longer working on this issue which just made everything they said arrogant, ignorant, confusing, defiant and dismissive. Why was John removed who has been working on this legislation before it was even a seed? This was a stupid move for DHS. 2nd, the person who I guess replaced him Kim kept saying hurtful and wrong statements like “there are providers that will only do 40 hours a week for every child”. WTF? Wouldn’t this defeat the whole purpose of comprehensive multi-disciplinary evaluation (CMDE) and isn’t autism therapy suppose to be individualized? Let me write this with examples of what they said today.

On one hand – they told us that each child must have a CMDE which can be done by the treating provider or an objective one. Good right, wait for it…then the family takes that CMDE to a therapy provider to develop or write an Individual Treatment Plan. Good right, wait for it….the ITP must reflect the CMDE…good right, wait for it…..this is the big one..

The treating provider writes the ITP, but it does not reflect the CMDE, a week in the child’s life (which they said is required) or family preference (which is also required) and when the family disagrees with this ITP…please wait for it because I almost boiled when I heard it today…..drum roll please…….

The provider can say to the family “if you don’t agree with our recommendations – too bad so sad..we are not a good fit for your child and we can’t ethically provide what you are asking, please hit the road and don’t let the door hit your behind”.

So, we have wasted the time of the CMDE provider, the family for writing useless a week in their kid’s life just to give the treating provider the final say. What is the point of CMDE, family preference blah and blah if treating providers can still take or not take whoever the heck they want?

When I asked that question, I was told that is not an appropriate question to ask in a public forum. Now what now? WTF? Then they tried to censor us or silence us by asking that we write our questions. How rude. My advice – don’t have trainings unless you can answer questions and allow time for questions and answers from everyone in your preparation.

It gets better. I also asked what is the discharge criteria and who decides? guess who? still the greedy ABA provider. All DHS now wants is a “rationale”. I kid you not. Currently under the plan they have, providers just have to have a discharge plan and there are providers like MAC that say “we can discharge a child from his/her medically necessary treatment if they are uncooperative or unwilling to follow our recommendations”. Now DHS says well – let’s just add a rationale. How can I explain this in layman’s terms – let’s take MAC as an example since they are the biggest and probably the greediest ABA provider in Minnesota. The owners of MAC Ms. Marshall or Mr. Carey will hire a spineless QSP and tell them to write MAC is ethically unable to provide the treatment the family is requesting and that is “our rationale”.

I am not sure if I should laugh, cry or just scream.

At this DHS autism training today, it felt like I was in a meeting with the Koch Brothers, Warren Buffett or NRA lobbyist and they were defending business owners. The state Medicaid agency whose biggest responsibility is to protect vulnerable and poor autism families stood with the multimillion dollar ABA providers in a publicly funded program that we parents advocated our butts off to get it approved and even considered.

I was extremely disheartened and disappointed at DHS today and shame on them, but this will only energize me to advocate from different lenses including going back to the legislators because what DHS staff said today is NOT what passed in 2013 on a rainy night at 1am. I was there and there is no way in hell DHS is going to omit or change what we worked so hard for which was to help and protect children and families with autism.

Furthermore, this bill passed years ago and the fact that DHS is still confused, behind, can’t answer simple questions or wants to silence and censor families is beyond words can express.

Commissioner Jesson, the buck stops with you and at some point DHS has to be cohesive and sincere in this autism benefit by standing with children and families. You can’t keep giving breaks to the providers while kids get screwed, discharged, discriminated against and suffer. Your staff even had the audacity to say that “discharging or family and provider disagreements are rare”. Are they living in la la land because I know I brought to DHS many families that have been bullied by ABA providers. Many came to you on their own crying and heartbroken. For DHS staff to forget all of those children and parents is cruel and wrong. I ask you take a charge here and stop this insanity. Quite frankly – it is getting tiring asking the same questions and each meeting getting different answers. DHS needs to say what it means and mean what it says and be on the side of vulnerable kids with disabilities.

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

Idil – Somali Autism Mom & Minority Advocate

Category: Autism Policy

Comments Off on IACC Without Insel – How will it survive? I am saddened by Dr. Insel’s Departure from NIMH

Alright – so, Chair of Interagency Autism Coordinating Committee (IACC) and Director of National Institute of Mental Health has decided to leave NIMH. I am saddened by this news. I have gotten to know Dr. Insel as the chair of IACC when I was a member and I cannot say enough good things about Dr. Insel. He is simply fantastic.

He is one of my favorite federal government researchers and leaders. He has so much compassion for autism children, adults and families. As our chair, he was always cool, calm and collected. Dr. Insel managed to always put our comments and words into cohesive and meaningful ideas during our 8 hour long meetings at NIH campus in Bethesda Maryland. He gave everyone a chance to speak and contribute.

Dr. Insel gave me so much opportunities at IACC and was the sole initial reason we had Federal funding for Somali autism prevalence research done by the UMN. I remember when I first contacted his office – he did not refer me off to his assistant or office staff. I got a phone appointment along with Dr. Daniels (I simply love her) and they were so kind, listened to our concerns, validated our frustration and decided to do something about it. They invited me to make our case to the full IACC committee during the public hearing which I did. Then towards the end of the meeting, Dr. Insel asked Director of CDC’s disability division – Dr. Boyle, Dr Dawson who was back then Autism Speaks’ representative and NIEH director to answer my questions. He told them to think about and do something about autism in our community. They did and did it fast. I think I got a call maybe few weeks later and was told to come back to DC which I did. It was in that meeting at IACC that a joint collaborative effort was announced. NIMH, CDC, NIEH, Office of Minority Health at NIH and Autism Speaks would contribute almost half a million dollars to Somali autism prevalence research. They would also provide technical assistance. Without Dr. Insel’s push and persistence – this would not have happened.

Another one of Dr. Insel’s many ways he supported us was when IACC members were writing a support letter to Sec Sebelius for autism therapy and most folks wanted to mention private insurance coverage. I asked to include public insurance coverage as well and Dr. Insel supported that 100% and asked CMS representative John to respond. And, as we all know now – CMS announced our last IACC meeting for the last committee that they now are covering autism intervention therapies for public insurance or Medicaid nationwide. Again, Dr. Insel was complete support of equity for everyone.

I think he simply rocks and I will miss his voice of reason and his calming ways he explained autism research with facts and compassion. I think Dr. Insel was the rock and the glue that held IACC together.

Here is Dr. Insel’s announcement.

Thank you Dr. Insel from the bottom of my heart of behalf of so many autism families in Minnesota and across the country. We will miss you and wish you all the best!

Idil – Somali Autism Mom & Minority Advocate

Category: Autism Policy

Comments Off on Congressman Kline is not running for re-election next year – SAD for autism families in Minnesota

Alright – so, one of my favorite congressman in Minnesota, Kline said he will not seek re-election in 2016. Kline represents Minnesota’s 2nd district. Kline has been the chair of the powerful House Education and Workforce Committee. We met Kline couple of years ago and he has written letters on our behalf to back then U.S HHS Secretary Sebelius and Director of NIH asking them to address our autism concerns which they responded and did address our concerns.

It was so easy dealing with his staff and office especially his health policy person Molly who has since left. Unlike Franken’s office – it was easy drama free and right to the point. Kline was also a member of Congressional autism committee. We asked him to vote and support the Combat autism bill when it was going to be reauthorized which he did. I will miss his staff and his willingness to always help his voters.

We thank everyone in his office in both Minnesota and Washington DC for their support and help and We wish Congressman Kline luck in his next chapter!

Not relating to autism – Kline supports poor minority children who are failing in DFL controlled school districts to have their education funding follow them into better schools and what do you know MN DFLer’s are against it. What a surprise, not really. This includes State Rep Atkins who wants to run for his seat. Please don’t vote for Atkins who is arrogant, ignorant and completely bias towards any racial equity. Atkins has voted against all of our autism legislations in the state legislature and did with arrogance and self-righteous attitude.

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

Idil – Somali Autism Mom & Minority Advocate

Category: Autism Policy

Comments Off on State Representative Kim Norton is NOT running for re-election next year – YEEHAW!

Alright – so, State Rep Norton who represents Rochester Minnesota said she will not be running for re-election next year in 2016. I for one could not be happier about that for many reasons. Let’s start from the beginning. Rep Norton has single handedly been the queen of autism disparity in Minnesota. If any of her horrible autism legislations passed – we would’ve had even more autism racial disparity.

Norton has written the first autism legislation asking the state legislature to pass a mandate to cover applied behavior analysis therapy for only wealthier private insurance autism families and knowingly excluded poor autism children that had public insurance, i.e. MA or Medicaid. I remember back in 2010 when we first found out one of her first ABA autism bills – we testified against her relentlessly. We went to her office and after we asked why she was writing such discriminatory bill – she kicked us out of her office. Not kidding – this is the Minnesota house which is suppose to be people’s house. And this Representative thought it was her private house. From that day on – we fought her consistently and persistently and prevailed in every legislative session defeating her racist autism bills by asking “cover ABA therapy for all kids or for none”.

To make matters worse, I mistakenly called Dan Pollock who back then was assistant to MN House Majority leader and asked help in appointing someone to fill the vacant seat in MN state autism task force because Rep Slawik (she was good) left. And, what do you know he asks back then Speaker Thissen to appoint Norton. Because of Norton’s divisive tactics and hurtful legislations along with her arrogant personality – the task force ended abruptly before its time and thousands of autism families were left without guidance and assistance at the state legislature. In fact, Norton wrote a bill to dismantle the state task force which passed in the house. Luckily, we fought and won in the senate and in the final Health and Human Services Policy Conference Committee, but the remaining GOP legislators for some reason did not continue the much needed and important state autism task force.

You see whatever Norton touched or wherever she went always ended bad for autism especially minority autism children and families.

We also campaigned against her, but sadly she kept winning. The last election, we could not even get someone to run against her. She represents a fairly conservative part of Rochester and hopefully someone who is compassionate and fair will run this time and win.

Goodbye and Good Riddance Rep Norton – you will NOT be missed by many minority autism families. We are glad you are finally leaving the state legislature.

Not surprisingly, when Norton announced her decision to not run – DFL minority leader Thissen thanked her for her autism work. Now what now? only a clueless Minnesota DFL would think and say something like that out-loud.

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

Idil – Somali Autism Mom & Minority Advocate