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Alright – so, by now we should all know that Congress is where all autism everything comes from whether it is research, services, resources, surveillance, etc and etc.

And, in order for any autism bill or autism funding to pass – it must go through the U.S House of Representatives. This includes state funding for autism services, research, and therapies. For example, ABA funding is both Federal from Centers for Medicaid and Medicare and state. In Minnesota ABA is half funded by CMS and half by Minnesota, which means for DHS to pay for ABA – it must be matched by CMS, which gets their funding by Congress. Another example, Minnesota department of health gets their majority of their funding from the Federal government from congressionally approved sources. MDH’s child and maternal health which autism is under is funded by block grants from Health Resources and Services Administration who get their funding from Congress. In other words, every area in autism depends on Congressional funding and allocation of resources.

Above reasons is why I contacted Speaker Boehner’s office back in 2011 when I was advocating for the Combating autism act of 2011. Speaker Boehner has been one of the easiest people for me to advocate in Congress. There was hardly any drama or arrogance in his office or within his staff. In fact, I got below letter from him and really how many autism advocates can say the Speaker of the U.S House of Representatives sent them a letter. Recently, Speaker Boehner also supported the ABLE Act that just passed which will help all people with disabilities.

Dear Idil:

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 Interagency 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

Therefore, I will always support Speaker Boehner and I am glad that he won. I know that we in the autism community have a friend in Speaker John Boehner. It is worth noting that Minnesota Republican members in Congress voted for him, which is great. Here is those that voted for him and the measly couple of dozen that did not. What I found interesting was that Minority leader Nancy Pelosi also had some defectors, but no one in the media even looked twice at them. By the same token, the 25 out of hundreds that voted against Boehner was all big news. Unhhh – ain’t that interesting, how selective liberal media is in their news reporting. I wonder how that relates to autism, think about it.

Above words do not reflect any candidate, agency or committee

Idil – Somali Autism Mom & Minority Advocate

Alright – so, I am always advocating against these blood sucking MN ABA therapy providers. And, I started thinking why does ABA cost over $100,000 per kid per year in Minnesota? Is that why our state attracts these blood sucking greedy bastards – not a typo. So, I looked how other states cover and pay for ABA therapy. First, let me say clearly before I get contacted by mad ASD parents asking what I have against ABA. Nothing. I really think, let me re-phrase that – I know Applied Behavior Analysis works and helps when done right, early and intensely for children with Autism Spectrum Disorder.

Many have heard refer to myself in state committees or even in Federal autism committee as the Elizabeth Tylor of ABA. I have been divorced and belittled by so many of them which is why I became an advocate for the children and families and usually against these blood sucking and racist MN ABA providers. Most Minnesota ABA providers don’t take minority children when they are young which is when ABA works best. Or they discharge them to make room for non minority ASD kids. I kid you not, this happened to me and it happens to so many other Somali parents who often don’t know who to call or where to get help. I have seen an ABA provider tell me my child would not be cured from autism at age 5 and that teaching him at a cost of $100,000 was too expensive. Therefore, it was not worth the cost. By the same token, this same ABA provider was doing ABA therapy for non minority autistic kids who were older than my son, some twice as old for the same $100,000 per year. If you are thinking how this made me feel. I was hundred degrees above livid and energized. It is the reason, I became a fearless advocate for minority children and ABA. It is the reason, Minn passed the first and only its kind of ABA therapy for low income MA kids in the country. It is the reason CMS changed its rules under EPSDT for autism and ABA.

To say it drove me is an understatement. No parent should feel what this provider made me feel. And, no child’s learning dreams should be crushed by racist ABA providers. As a result of our advocacy,  few of the MN ABA started taking our kids usually when they are older and can’t really benefit from intensive 40 hours of ABA therapy, but sadly they demand it and if parents refuse or even ask to do 3/4 of the hours, they are often discharged. I have seen this at least weekly.

Now what this has done is attract minority blood sucking greedy ABA wanna be providers. For instance, there is a Somali person who now wants to open an ABA center. Not bad right? Well – it would not be if he actually understood ABA autism therapy from lawyers ABA. If he actually cared about autism children and families. If the daycare he owns now did not have so many child safety violations. In other words, because MN ABA costs over $100,000 per kid which is outrageous and wrong is now attracting everyone and their mamas to open an ABA center.

Our children are vulnerable and can’t tell us what happened. I ask DHS to have a better oversight and not let any greedy jerk open an ABA center even if there is a need for diverse ABA centers. Let me put it this way, Justice Thomas looks like me, but I would not trust him with my voting rights. Just because they look like us does not automatically mean they care about our children. Nor does it mean they understand autism and ABA therapy.

So, I ask Commissioner Jesson who I think is simply amazing and God knows I have been barking in her corner since her first week of becoming the DHS Commissioner.

True side story, the first time I met Commissioner Jesson was when she came to testify or introduce herself to the senate health committee back in 2011 when Sen Berglin was the Chair. I saw Berglin going to the committee in that long hallway that connects the state office bldg to the Capitol where the senate hearings are located. And, I thought to myself how lucky I was because that is a long hallway and Sen Berglin was a hard person to see. But now she has no choice but to talk to me. So, I bombarded her with what to ask Jesson and gave her kazilian notes and information. I am sure she was thinking – calgon please take me away.

At any rate, Sen Berglin asked Jesson what she intended to do about autism especially in our community. And, I remember Jesson said to her “I have only been in this job for 4 days”. So, I gave a note to one of the pages to give to Berglin that said “that is four days too long – get cracking already.” Anyway, to make a long story short from that day on – I have been consistently and persistently asking DHS to assure there is no racism in MN ABA providers. And, there won’t be hopefully because we have passed this new MN ASD benefit.

Now and almost end of my advocacy with them, I ask  Commissioner Jesson and DHS Autism team;

1. Why does ABA therapy cost $100,000 in Minnesota? this only attracts greedy bastards who could care less about our kids?

2. If ABA full intensive costs $50,000 in WI and even less in many other states – why is it so much here?

3. Is there a way for DHS and managed care to assure ABA does not cost this high and that it is reasonable so that only those that care about our kids stay in the business and greedy ones leave?

4. When a parent is discriminated against by an ABA provider, where and who should they call and What rights do they have?

5. When a child is older and does not need 40 hours of intensive ABA therapy as research states, yet ABA provider forces them to, where do parents call to get help and what are their rights?

6. Can you please make sure just because someone has CTSS certification does not mean they can operate an autism center? CTSS is under such big umbrella and those that have CTSS does not necessarily know or understand ABA or autism.

7. Can DHS have clear rules and policies that allows parents to see and visit their children in ABA centers without being bullied by the owners?

8. Can parents have access to their children’s ABA records without hesitations from ABA owners?

9. Can DHS assure the child is actually learning what is in his/her ITP and if not where do parents go for help or questions?

10. Can DHS make sure greedy providers are not prescribing a blanket 40 hours for 20 year old autistic or even a 15 year old?  There is no research for intensive 40 hours of ABA at this age.

11. I have seen ABA providers tell me and other parents that we could not comment or suggest what our children should learn on the ITP (individual treatment plan), yet the Minn Statute that governs CTSS clearly states treatment should be child centered, family driven and culturally responsive. What happens when these blood sucking ABA providers refuse to follow that and discharge families that dare question their kids treatment programs? Think of it this way, IEP is funded the same means and method as ITP which are both Federal and State, yet parents have so much rights and responsibilities in IEP because the rules and polices are clear and MDE does a good job in assuring that. But for some reason, DHS is loose in ITP policies and family rights and responsibilities. Please change this so that as parents we are in the driver seat of what and how our kids learn because we know them best and their success or failure affects us the most. Our kids should be looked as children not as dollar signs by these blood sucking MN ABA providers. This must change. ABA therapy must be necessary, cost effective, family friendly and always child focused – period. Oh, and not 40 hours for zero to 21 years old or forever. There is no research for that – I assure you, I checked high and low for it.

Again, I am so grateful to Commissioner Jesson, Asst Comm Barry, Loren and Anne H for their support for the thousands of Minn autism families. And, I am personally thankful to DHS for always taking on the side of equality and fairness above all. In sum, Wall Street should have nothing in common with autism. And, ABA providers should not be making six figures to treat our kids when the cost is half or even 1/3 in other states. The fact that Minnesota Medicaid agency pays ABA therapy more than CA, WA or HI is based on greed not cost of living or medical necessity. In addition, it is not medically necessary to have multiple therapists at the same-time for the same child. No other state does this, so why does DHS allow these blood sucking ABA providers bully them. Finally, KEPRO needs training on what medical necessity is and what ABA research says before approving a blanket 40 hours for every child, that is insane and stupid.

DHS – you pay these providers, you inspect them, you certify them and you approve the payments. I ask you to please use common sense and compassion in this.

ABA cost in Minnesota article by Mpls Tribune.

Double standard in Minn ABA by Mpls Tribune.

How much ABA costs in other states.

IACC and services research for the past five years. (note, as a member of this Federal IACC services and treatment subcommittee and I’ve read every research that came out for the  past five years, so I am not talking out of my you know what).

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, I usually don’t write about autism parents that comment about me during IACC meetings. I understand as an IACC member – I represent them and it is impossible to please everyone and I also understand parent’s frustrations with Federal government’s response to autism.

However, I would like to make an exception to this rule regarding Katie Wright. First, I really admire and respect Katie’s views and feistiness. To give a brief history of Katie to those that might not know her which would be if you are not part of the autism community – Katie is the inspiration that created Autism Speaks. Suzanne and Bob Wright are the founders of Autism Speaks and the parents of Katie whose son has autism. As we all know, Autism Speaks is arguably the most powerful and wealthiest autism advocacy/research organization in the world. Bob Wright among other things was CEO and Chairman of NBC.

Katie also writes for Age of Autism which is an autism blog where she mostly disagrees with Autism Speaks’ research activities. She also comes to IACC meetings as well as most Congressional autism hearings. In other words, Katie is not your typical autism mom. I would say, she is very well connected and has more influence than most of us only dream of.

First anyone to call me nice in any autism committee is really a pleasant surprise. Katie said I was too nice and neutral. Ok, let’s explain that before it goes to my head. She means when it came to vaccines and autism. First of all, I am not a researcher and nor do I play one in IACC or any other committee. 2nd, IACC has directors of every Federal agency responsible for autism from NIH, NIMH, NIEH, CDC, FDA, Dept of Ed, Dept of Defense, CMS, etc and public members including me. As a public member, Secretary of HHS Sebelius appointed me for specific reasons which were about autism and racial disparity which is my passion. 3rd, I have zero desire to go against research or the very person that was kind enough to appoint me. 4th, even if I wanted to – I have to use logic and science which tells us autism is caused by both genetic and environmental triggers which we still don’t know exactly what those are. 5th, if you read my blog – I am only interested in autism therapies, services, nonverbal autism, wandering and fighting racial autism disparity. I have zero interest to question America’s best researchers and public health leaders about autism and vaccines – sorry Katie. I really just don’t.

6th, I understand many Somali autism families blame vaccines for their children’s autism and I blame the Minnesota department of health which has failed our Somali autism community by not doing any autism research that focuses on environmental causes. MDH also failed our community under Dayton administration for its charge of assurance miserably. This however does not mean we go against current science and research even if our state health department is incompetent.

I remember back in 2012 – during one of IACC’s meetings, I met one of Age of Autism’s writers who is also a parent along with Jake who now runs autism investigated blog and they told me to ask about vaccines when Sec Sebelius came. I told them – I was going to be nice and neutral and not piss off the U.S Sec of HHS who just appointed me and I meant it. Plus, even if I asked her a question about vaccines and autism, she would’ve referred my question to NIH, NIMH and CDC directors who were all sitting there and they would’ve cited science and research which says there is no correlation. In other words, I would have wasted my opportunity to ask a question, so instead I asked about autism and racial disparity which again is my passion because no child should get less therapy or services simply because of the color of their skin.

Here is my gentle and friendly advice for you Katie; I don’t think there is another parent in this country that is more well connected or has more influence than you. So, if you don’t agree with the current research, then ask your mom and dad to fund a different one that can link autism to MMR vaccines. Why not put your words and your money in the same place. Better yet, tell your mom and dad to direct Autism Speaks to do a vaccine/MMR and autism study. I am sure you can persuade them.

Finally, if at any time – you want to advocate with me on the issues that I care about including Wandering which I know you care about as well then don’t hesitate to contact me. I would be more than happy to join that effort with you. Oh and I am very impressed and glad that Autism Speaks now has a Community Affairs VP, Ms. Fields who is a person of color. Finally, some color in Autism Speaks leadership, I think that is great!

As usual, above words do not reflect any committee, agency or candidate.

Idil – Somali Autism Mom & Minority Advocate

Centers for Medicaid and Medicare (CMS) released FAQ few of days ago on Sept 24th, 2014 about autism. Basically CMS said all the right things. Folks, it does not get better than this. In a nutshell, CMS will cover autism therapy of both ABA and developmental therapies for children from birth to 21 for all disabilities not just autism. I think that is simply fantastic. Plus, CMS recognizes the need for medical necessasity and objectivity in treatments. And, it gets better, because the funding is both Federal and State – all autism providers including ABA clinics must follow the Federal guidelines of culturally and linguistically appropriate services (CLAS).

Seriously, I feel like a kid in a candy store. I have hoped, prayed, begged, asked – ok harassed for this type of inclusive, holistic and non-bias approach to autism treatment and therapy. So many people at CMS deserve thanks and kudos from Tavenner to Mann, O’Brian, Johnson, etc and etc.

For our state, I think the lone person that kept asking the most and articulated so well is Anne Henry from Minnesota disability law center (MDLC). Anne has championed for managed care autism kids at the state legislature by asking to get the numbers of how many kids on MCO’s are getting ASD therapy and at what age. I think this will help ensure minority kids who usually have managed care health plans get equal access to early autism intervention so they can reach their best outcome and full potential.  Huge thanks to Anne who I have gotten to know and she rocks. Anne has helped me with many CMS advocacy in recent months as well.

DHS also had an autism meeting last week on Sept 16th, 2014 where they informed us (parents, providers, advocates) their intention to change their 1915i autism waiver to newly approved and better method of autism therapy under the EPSDT state plan. People gave their thoughts and opinions and DHS took all of them and considered when it could and submitted the application to CMS for approval. This is when a state agency is simply perfect. Gather stakeholders of whatever issue, get their honest input, consider them and include in your final plan. I mean maybe MDH and even MDE can learn from DHS. I am simply impressed by DHS’s new autism team. I am so grateful and appreciate all of their work and support for ALL autism families irrespective of income, race or nationality. Personally, I am extremely grateful and appreciate all the hard work everyone at DHS autism team put into this – especially Anne H and Loren C.

DSH even went further and asked all stakeholders to participate in another area that needs improvement such as the safety of physical buildings our kids go for autism therapy hours at a time. Currently, there are no good standards to assure the child is safe and learning appropriate skills. In addition, DHS wants input from everyone on medical necessecity because a provider can make poop therapy medically necessary and at the same time a bias provider can discharge a child prematurely by claiming it is not medically necessarity. In other words, no family irrespective of their race, color or nationality shall be bullied, intimidated or harassed by any ABA or any autism therapy provider – period. Sadly, it happens a lot here in Minnesota and probably nationwide but we are determined to stop it at its tracks so that ALL children get the best intervention possible at the right time fairly.

If you are interested in participating in this work group which will meet on three Mondays in October and Nov 2014, please contact via email DHS autism email ASD.DHS@state.mn.us – If you are mental health professional of color, I beg you to please take part. Your input and ideas are sorely needed. During the last meeting, there were several Somali autism parents, but we still need professionals of color and more minority autism parents to participate and give their ideas and input. If we don’t speak up and advocate for our children and our communities – who will? No one else will, we must do it rather than just complain of inequalities and bad services. Change comes from speaking up.

In a somewhat related to this post, I just received a notice that Health Services Advisory Council (HSAC) which decided or set the ground work for this autism benefit a little while ago after the state legislature asked DHS to come up with an autism benefit – has added minorities to their team. When this ASD benefit was being decided HSAC had zero African American person and I have been asking – ok begging for them to add some color. HSAC is led by Dr. Jeff Schiff and Ellie Garrett (who in my humble opinion are some of the most inclusive, welcoming, and wonderful people I met at DHS) took that suggestion to heart and looked high and low for physicians of color. And, HSAC is now 1/3 minority. I am ecstatic about this and appreciate Jeff and Ellie’s willingness to not just say we are committed to diversity, but actually be committed to diversity with action. You see there is a difference when people say that vs when they actually do it. And, they did it. Awesome!

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

Idil – Somali Autism Mom & Minority Advocate

I have been thinking a lot about this simple sentence of supply and demand lately. Those few words drive the economy, how much we pay for things, how long we wait for services and resources, etc and etc. They also drive autism therapy and autism services in Minnesota and probably nationwide.

We know that there are thousands children with autism in Minnesota (over 17 thousand) and less than two dozen autism early intervention providers are here. In other words, the demand for ASD therapy providers is so high that the waiting is list often as long as years which defeats the purpose of early intervention is the best hope for ASD kids. None of these couple dozen ASD therapy providers are owned or run by a person of color which also means most minority ASD children are on even a longer wait list, discharged sooner, never accepted, so on and so forth.

Have you ever heard of last hired and first fired. This usually means the last hired is most likely a person of color and the first fired is probably a person of color. This same method is used by many autism therapy providers who usually take few minority ASD kids then if there is a staff shortage – they are the first to be discharged or told we don’t have staff for you. Those that provide in home therapy also don’t like to go to minority communities. For example, I would say there are not a lot of in home autism therapy in north or even south Minneapolis by Cedar Riverside area.

This supply and demand problem can also dilute the quality of the providers, especially when DHS has no policy to control and assure any quality. This part is so insane. How can the biggest state agency in charge of this not have any quality control for these autism providers that are teaching our most vulnerable children. I remember couple of years ago, when DHS also did not have good quality for child care centers and one brave reporter kept writing about that which resulted an overhaul in policy and regulation in Minnesota and nationwide. And, one thing I learned about reporters is that they usually write something that either affects them personally or they are interested. For example, any reporter with young children that go to child care centers is much more likely going to be interested in that than say autism centers.

So, I imagine if DHS did not wait for a reporter to write about the lack of safety and quality control in autism centers. I imagine if DHS did not wait until an autistic child got hurt or sued DHS for negligence. I imagine DHS used common sense of they certify, fund, inspect and audit these autism therapy providers and the very least they can do is to make sure the children are learning well and are safe. Why is that so hard for DHS, I wonder?

Yes, I know many of the quality of the providers will be addressed in the new autism waiver benefit, but not all and unless our kids are safe and are learning well – I don’t think anyone or building should be called an autism expert or clinic. There must be safety measures, quality control and data reporting for all children that get hurt little or big to DHS.

Again, I ask Minnesota Department of Human Services to relook at this issue of autism provider safety and quality control before a child really gets hurt.  I hope DHS can learn something from MDE in quality control. For example, charter schools are funded by the same means as ABA in Minnesota of both state and Federal. Yet, charter schools have actual rules, policies for those in charge and for parents. By the same token, for many ABA providers not so much even though the funding is from the same sources. Why is that? Is it because the supply and demand is so huge that DHS looks at this with a blind eye. I really hope not.

We need DHS to be the adult here and take charge of assuring our autistic children and teens are learning and are safe. DHS must inspect the physical facility, ask for independent evaluations to assure the child is learning and progressing to reach his/her best outcome and the parent is part of the team, not sitting on the sidelines to just sign ITP’s. Another example, when a center says a child will get one on one treatment, what happens when that does not happen and it happens often in ABA centers. For example, two or three children are assigned to one therapist due to vacations, staff turnover, firings, quitting, vacations, etc.  Should that be notated, parents notified and DHS aware.

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

Idil – Somali Autism Mom & Minority Advocate

Alright so, I have a love/hate relationship with many Minnesota ABA centers. I love the method of ABA and how it can teach almost any skill to a child. I have the opposite relationship with many of the ABA owners. Where is the disconnect and why is there a disconnect.

Most of these ABA centers are run and were started by mostly autism parents, which are good right, not so fast. Initially, they start because of their children then somewhere either greed or racism happens. Then there is the Minnesota Department of Human Services which has almost no policy or oversight for ABA centers. Let’s explain a little deeper;

First – ABA method really works if it is done intensively for younger children usually younger than 7  or 8 years old as research has stated. ABA can also work and help older children, but definitely not 40 hours. In other words, a two, 10, 15 and 20 year olds should not all be prescribed 40 hours of intensive early intervention therapy. This is where DHS fails because it never questions or asks for evidence and objective opinions.

2nd, many MN ABA providers hardly take minority children when they are young and can most benefit from the intensive therapy, yet DHS has hands off approach whereby no provider is asked to follow no anti discrimination law.  I have seen ABA providers use the excuse of we are a private company, but that does not mean they can or should discriminate against minority children. But they do constantly and consistently with no policy from DHS to assure it does not happen.

3rd, someone can just get an in-home DHS ABA certification then open gazillion ABA centers and DHS does not inspect or care what the building looks like, if it has safety measures, if it has natural disaster protection areas, if it is appropriate for kids to learn and be safe. In other words, a person can put 10 kids in a room of 10 by 10 feet and DHS could care less because they have no policy to inspect nor do they have guidelines of what an ABA center should look like. To make a similar analogy – let’s say you open an in home child care then decide to use that license to open a childcare center. DHS would have you for lunch by breakfast because the requirements for in home is very different than the requirements for a center. Keep in mind children in childcare are mostly healthy and can tell their parents what happened. Autistic children even if verbal can’t always articulate what happened, yet there are no guidelines or policy to assure their safety or protection by the human services department that certifies them and is paying for their services. What is wrong with that picture?

I have seen and heard autism parents complain their children came home with unexplained bruises from ABA centers, yet were denied the opportunity to visit their children un-announced. Think about that for a minute. You leave your autistic child in a center, he/she has obviously gotten hurt and you the parent are not allowed to come and check on them. Yet, MN DHS still approves this – WTF?

I have seen many Somali childcare centers have un-announced and un-invited visits from DHS inspectors and rightfully so. They cite them everything from not having the bathroom close enough to the kids learning area, to the emergency book was not in plain site, to too many kids in one area, to the staff hired were not properly checked, to you name it. By the same token, our kids who are so much more needy and vulnerable have no such oversight or inspections from DHS. WTF?

Here is my friendly and gentle recommendations to DHS:

1. An in home vs. center vs. school ABA/mental health certification should be all-different and there should be appropriate rules for each kind.

2. Come up with guidelines to inspect ABA centers and buildings to make sure our kids are safe, secure and learning in an appropriate environment.

3. Make sure no ABA provider denies any parent the right to visit their child whenever they want without calling or making appointments.

4. Make sure all children are not given a one size fits all hours or programs. Instead treatment plan should be child focused, culturally appropriate and family driven which is what the CTSS guidelines actually state, yet most ABA centers have no idea of this nor care about it.

5. Make sure children are actually learning and parents can ask about their kids programming without being afraid of being discharged or being labeled the difficult parent because god forbid they asked questions about their kid’s program.

6. Make sure DHS can visit & inspect any ABA center or provider anytime with no appointment so that treatment and physical space is always safe and appropriate healthy learning environment.

7. Make sure ABA providers collaborate with the child’s team of speech, OT and education since autism affects all of those areas. In other words, ABA providers should not dictate and bully parents into their way or the highway.

8. Make sure you are keeping some kind of racial record and if a provider has one or zero minority children – it ain’t because they did not apply. It is because that provider is racist either sub-consciously or on purpose and maybe train them on CLAS guidelines which are mandatory for any medical entity getting federal funding including MA coverage.

9. Make sure ABA providers give parents names and list of advocates if they need it and enough time to bring one if the need arises.

10. Finally, protect our autistic children the same way you do children in child care centers because it is you – DHS that should assure our kids in any clinic or center are safe and learning appropriately. You provide the funding and the license/certificate, and you must have better oversight and guidelines as well.

Thanks!

As usual, above words do not represent any agency, committee or candidate.

Idil – Somali Autism Mom & Minority Advocate

Alright, so if you know me or read my blog then you understand my love/hate relationship with Autism Speaks. I love their research functions, I despise their ABA advocacy functions. First of all – their president Ms Feld walks on a high horse. Actually, I think the horse she walks on has another horse it rides or something. I mean she is really far removed from what is happening on the ground with autism families especially low income and minority ones. Even their leadership has zero African American person. What does that say about them? Think about that and how can Autism Speaks then speak for all of us.

I can’t even count how many times I have had conversations in public and private with Autism Speaks’ advocacy folks. And, they always tell me they care, they know, they understand then they go out and only advocate for the wealthy mostly non-minority autism families with private insurance. Really, they are getting on my last nerve. I wonder if their left hand knows what their right hand is doing. Seriously I wonder about that because they seem to talk from both sides of their mouth. They remind me of a child that always says to their parents – yes mom/dad, ok I will do that then turns around and does the opposite of what he/she told their parents.

I can’t really understand why Autism Speaks can’t speak for all autism families – rich, poor, Black, Brown and White at the same time for the same ABA coverage. How hard can that be? in fact it might actually be fun and equal.

For example, we now know that CMS will cover ABA autism therapy in all states, but states have to ask and put it under their EPSDT Medicaid plan. This is really good and Autism Speaks can ask whatever state they are advocating in for both coverage of Medicaid and Private insurance, right? But they don’t – they go to each state like they are now in NC asking for private insurance coverage, but not for Medicaid coverage. Why the heck not advocate for both?

Remember when Michael something came to MN and testified in our state legislature for only private insurance families and we said to him and to the legislator – no way/no how. If you are going to dictate and demand private insurance companies you don’t even own to cover for autism therapy then you better demand and dictate MN DHS to cover the same. And we prevailed which is what happened when MN state legislature passed MA and private insurance autism therapy coverage. But of course, we are not in every state and sadly Autism Speaks does not seem to learn any lesson of equal access by just advocating for the same equal access for all kids. This frustrates the crap out of me.

My humble advice for the remaining dozen or so states that Autism Speaks has not yet created racial autism disparity is when they come to your state demanding private insurance coverage – fight them. They might have the K street type lobbyist, but you have the ability to vote for those making the decision and they will hear and listen to your voice. So, fight Autism Speaks and tell them unless they are there to help everyone then they should get out of your state. If that does not work and they overwhelm you, then do what FL and WA did. Sue your state Medicaid agency for unequal access to autism therapy. If you are from Somalia or any other minority advocacy agency fighting Autism Speaks for equal access – feel free to contact me. I would be more than happy to help you and share what we did here in Minnesota. Autism Speaks might have the big bucks, but we can win.

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

Idil – Somali Autism Mom & Minority Advocate

alright, so by now we all heard that President Obama signed the Autism Cares Act into law on Friday August 8th, 2014. This law extends IACC (Interagency Autism Coordinating Committee) which I serve as a public member nominated by Previous Sec of U.S HHS Sebelius. It also continues many Federal autism programs in various Federal agencies, such as HRSA, CDC’s ADDM sites, NIH’s research activities and so much more.

This new act is good for five years which is more than the last act that is to sunset Sept 30th, 2014. There are many important and good things within this bi-partisan legislation. First, it has autism related services, training and information must be culturally competent. Let’s explore what this means. For starters, main stream agencies that usually hog the services can no longer do that and must provide their services and information based on the families culture and understanding. For example – when Pacer does kazilian webinars for mainstream autism families and nothing for minorities will no longer be acceptable. This means HRSA which usually funds these agencies including state health departments must be vigil in assuring there is equity and equal access to information and resources. It also means state health departments such as MDH that usually just give the HRSA funds to local public health counties must find a way to assure the counties are doing their work in a manner that is culturally competent.

Another good and new thing this act adds is services for young adults and adolescents which are sadly often forgotten as if autism goes away after a child reaches teen or adult. Autism is a life long disorder and services and resources including higher education, employment and housing must be part of the strategic plan. This act also has a person to be appointed by U.S HHS as an autism appointee which I think is fantastic. Plus, this act expands the public members by including members nominated by Congress which I also think is a good idea given IACC plan goes to Congress.

Overall – it is a good legislation and a step in the right direction. Sadly, as I said in my blog before – my Federal advocacy ends here by Sept 30th 2014 when current congressional act expires. If there was a person that I hope replaces me would be Anne Harrington. Anne in my opinion is the perfect and complete package. She is Caucasian, has an adopted African-American son with autism, has worked in the education system for years, is a policy advocate and a trained autism therapist in developmental behavior which is most often missing in IACC membership.

I think Anne would be perfect. Plus she is the most down to earth, humble yet so knowledgeable person I have ever met. Anne is always in the corner of autism families irrespective of their race, color and socio-economic status. If I could suggest one person, it would be Anne.

Finally, if you ever wondered how this autism act of 2006, 2011 and now 2014 got started. It was started by parents from NJ who went to Congressman Smith from NJ. Smith wrote this bill back then with Congressman Doyle and they have been a champion for our families ever since then. The point being autism parents have such a huge impact on policy and change, especially when combined with thoughtful and sincere legislators. I met Congressman Smith once in 2012 and when he speaks about autism, his body language really says more than his words. He cares and he means what he says and does what he promises.

Here is my friend Matt’s blog post on this new bill. Here is the White House Blog on it.

As usual, above words do not represent any committee, agency or candidate.

Idil – Somali Autism Mom & Minority Advocate

Alright, so hopefully if you are an autism parent, relative or love someone with autism – you heard that Autism Act of 2006 and 2011 changed its name to Autism Cares act in 2014. This was a bi-partisan bill being led by Congressman Smith (NJ- R) and Sen. Menendez (NJ – D). HR 4631 passed the house smoothly, but S2449 hit some obstacles in the Senate after it passed out of the HELP committee.

Why you ask? Because autism is hard, confusing, complex disorder that often parents, advocates and researchers disagree on. There was a strong minority of parents and advocates that opposed this act and had their followers contact few senators to oppose and not vote for it. I for one never ever try to oppose any parent as I can only speak for my son. And, as a minority autism advocate – I always have empathy for those that might not have the majority’s views.

However, from what I learned in my minute and half of advocating in both Congress and state legislature – I would have done it differently. First, I would not ask so many things. I think asking Congress to create even more advisory panels & more government bureaucrats did not help. 2nd, Picking on Federal government agency leaders that Congress listens to their advice and take also did not help. Most members in Congress irrespective of their party usually trust researchers. 3rd, I would’ve only asked environmental research be at least 20% of the Federal funding and written into the legislation and reported to Congress and HHS Secretary. And, I would’ve asked one DFL and one GOP to carry it in an amendment in the house so that when it got to the Senate – they could see it had a bi-partisan support. We all know the U.S Senate is lazy, the U.S House is usually better. 

I get it sometimes you want to ask the kitchen sink in the hope of just getting a spoon full, but in Congress where they are usually confused and over-whelmed with so many issues – less is better.

Anyway, the bill passed the Senate end of last week as it was mostly from the house with the help of Sen. Menendez who really pushed and advocated behind the scenes to convince the few senators having problems.

It now awaits for President Obama to sign and IACC which I serve as a public member and was nominated by previous HHS Sec Sebelius will sunset end of Sept and the new HHS Sec will have to nominate new members. I will not be going back to serve IACC, sadly. Oh, alright – some of you are celebrating. But all kidding aside, I learned so much from everyone especially those from NIH, NIMH, NIEH, CDC, HRSA and CMS as well as many of the public members such as Dr. Dawson, Dr. Mandell, Dr. Batra, Sally, Matt, Scott, Lyn, Jan and so many more. I thank everyone for their support and encouragement. I have also learned from the many courageous parents that came to every meeting. You all truly inspire me to keep going and advocating. I hope you know your voices and opinions are listened to at IACC and validated. Finally, I would like to thank IACC Chair, Dr. Insel for leading our committee and always respecting opposing views, and assuring we always came to a middle ground. 

I have met people that I will remain friends with after this which I am very grateful to. I hope that the new Sec appoints more diverse members to the next cycle of IACC. And, I hope we as a nation continue to strive for equity in policy, services, resources and research.

Above words do not represent any committee, agency or candidate. Idil – Somali Autism Mom & Minority Advocate