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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 [email protected] – 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

Alright, so if you follow my blog then you clearly understand how hard this has been and how long it took. But, as the saying goes (waxaan loo dheefin looma dhaayo). Minnesota Department of Human Services (DHS) submitted the long awaited autism therapy coverage waiver to CMS last week. As we all remember, MN state legislature approved 1915i waiver in session 2013 and allocated over $12 million. This will cover developmental and behavior therapy for children from birth to 18. Currently, many states have private insurance coverage for ABA (applied behavior analysis) and few states have Medicaid coverage for autism therapy. However, no state has 1915i waiver that will cover kids from birth to 18. I think Michigan might be the only other state with similar waiver, but it only covers for very young kids.

This waiver will also assure the duration, scope and treatment is equal between children on fee for services and low-income kids on managed care health plans. I can’t say enough how happy I am about that. It also has many other good measures that will assure children get medically necessary treatment that is individualized for them. In other words, currently, some ABA providers prescribe 40 hours of intensive therapy for kids whether they are 2, 10 or 20 and that is simply wrong and is not individualized. Autism affects each child differently and should not be one size fits all. Additionally, this benefit has avenues for parents to take in the event they are being discharged or bullied by ABA providers. And, we all know they do probably daily. It has happened to me and I am a bull when it comes to autism, yet I have been told my son is too old, too young, too this, 40 hours or hit the road, etc and etc. I think it is important when this happens to parents that they keep their head high and report to DHS. I will be posting who at DHS to contact soon because autism by itself is hard. Add greedy or racist ABA providers to it and it is pain like no other. But, don’t give up hope, there is light in this tunnel and it is equality, fairness and medically necessary treatment that is family centered and child driven – not provider driven, greed or racism. Yes, greed, racism and provider driven therapies happen daily to families. I think that is sad and frustrating and we must advocate and change that. ABA is good and has research behind for young children. I think for young kids 40 hours is good to at least try for couple of years, but the notion of doing 40 hours for teenagers and young adults is simply not based on science nor research – rather greed and selfish ABA centers.

This benefit also has a measure that requires independent evaluation and assessment because currently the provider just hires some spineless and useless doctor to prescribe either too many hours or too little hours without regard to what the child needs and what the family wants and is capable of. I have seen these spineless doctors prescribe 40 hours of ABA for 17 year old while they say 4-year-old is too old for ABA.

They also have a tendency to not even assess the child, just write whatever the owner of the center wants them to do. Sadly, those that disagree with the owners of ABA centers get fired. I think DHS must step in and stop all of this non-sense of both child and employee bullying and intimidation. The funding is public just like MDE funds public schools or charter schools run by individuals yet the policies are so different like night and day. Could you imagine being bullied by a school district whereby they tell you “bring your kid 40 hours or hit the road”. You, Pacer and MDE would have that school district for lunch by breakfast. Yet, so many MN ABA providers take the same public funds and bully parents in ways that are heart-breaking and in-humane.

Therefore, I ask that DHS which funds these heartless & blood sucking ABA providers to step in and help parents.  I for one am excited about this new autism waiver. I also hope that it does not become the million dollar phone that does not ring. In other words, it will be useless unless DHS assures children get the therapy they need and families are respected and validated. In addition, I hope minority communities learn autism therapy, open autism ABA centers and teach their own children in their own culture and their own way. Otherwise, we will always be asking for help rather than helping ourselves. There isn’t a week that I don’t hear of a Somali autism parent that has been discharged, dismissed and disregarded by an over-rated either greedy or racist ABA providers. I kid you not. So, we can either learn how to fish or keep asking for fish daily and take offered a rotten fish. Think about it.

Thanks!

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

Idil – Somali Autism Mom & Minority Advocate

Alright, so if you understand autism policy in relation to autism therapy then you know there are over 35 states with early intervention autism therapy coverage for higher income autism children – thanks to Autism Speaks who solely advocates for wealthier autism families that have private insurance coverage. Now, I don’t want to get emails from pissed off wealthier autism parents asking what I have against private insurance autism families. I have nothing but respect and admiration for those families. My concern has always been where is the equal intervention for low income autism families who we know are disproportionately minorities.

Well – I have zero concern no more due to recent announcement by Ms. Mann who heads up Centers for Medicare and Medicaid Services (CMS) children coverage including autism. I am not even sure where to start here because there are so many angles and process that took place to get to this amazing place with CMS.

Let’s see – maybe we can start when so many state legislatures started approving coverage for only private insurance autism families, some of the low income families in few of those states started seeing the double standard and sued their state Medicaid agency. Florida and Washington autism families that have Medicaid sued and they both won whereby a Judge ordered those state Medicaid agencies to cover similar autism therapy as private insurance. So that therapy coverage is not seperate and un-equal. As a result, state of WA sent a request to CMS asking to add early autism therapy coverage under their state Medicaid plan of Early, Periodic, Screening, Diagnoses and Treatment (EPSDT). This meant every child from birth to 21 who had a disability or a medical condition including autism would get early screening, diagnostic and treatment for their condition without the state having to apply the ever cumbersome waivers.

Then the good news came when couple of weeks ago – CMS approved Washington’s plan. YAY!

In parallel, many advocates including me have asked CMS why should families sue their state Medicaid agency to get the necessary medical treatments their children needed. In other words, if CMS is under the umbrella of HHS – same as CDC who says learn the signs so you can act early then NIH says act early and get early intervention. CMS under that same umbrella could not say to the same families – so sad/too bad we don’t cover early intervention. I have asked high and low all the way to CMS administrator Ms. Tavenner and Ms. Mann and God knows I have asked (ok – harassed) so many other CMS folks. The goal was autism parents who are already stressed and tired to not have to collect data, be denied services then find a lawyer, then sue their state, Come on. That was simply too much and too cruel.

This took a really long time and I have heard everything in the book of well – we can’t just approve ABA because ABA was created after EPSDT rules were written by Congress, to no CMS can’t cover ABA, Floortime, etc because of yada yada and more yada, to parents must ask their state Medicaid agency, to parents must ask their local legislators to you name it. Well, needless to say – I never gave up and wanted equality for low income autism families along with countless other autism advocates minus Autism Speaks and we finally prevailed.

On the last full committee IACC meeting, Melissa Harris (Love her!) From CMS gave us the best news ever that I think I got goose-bumps. Melissa said states can now add autism therapy coverage of both behavior and developmental therapy to their state plan under EPSDT. OMG – you read that right. That is like getting a gift from Nelson Mandela and Mother Teresa in one package of kindness and equality. What a way to end this cycle of IACC. I was sooooo happy that I wanted to hug everyone from CMS that day. I think what CMS did will definitely decrease autism racial disparity over time as more low income children get access to hassle free autism intervention and get diagnosed early which will improve their best outcome.

I am personally very grateful to so many people at CMS that God knows I have been on their case relentlessly and persistently, especially Ms. Mann, Verlon, Courtenay, Tavenner, Khalid, Keri & Ellen, but most of all John who no matter my pissed off attitude stayed on task and concentrated on what I said, rather than how I said it. Thank you John for tolerating me for so many years starting with your first day at IACC which I think my words shocked you to say the least. I think you are awesome and I along with hundreds of thousands of families across this country are very grateful for your support and help. In borrowing the words of Neil Armstrong – this was a giant leap for autism families across this country from Alabama to Alaska, from Washington to Wyoming – the grass is now green and intervention is available for ALL autistic kids.

I hope every state changes their state plan and adds autism coverage under their EPSDT which will cover children from birth to 21 in screening, diagnosing and intervention for both behavior and developmental therapy. CMS even created a new email ([email protected]) for state Medicaid agencies that have questions or need technical assistance – how awesome is that.

Here is the full letter from CMS explaining in detail how autism therapy can now be covered for all fifty states.

July 25, 2014 – My good friend and fellow IACC member whose opinion I value and respect just posted a blog on this very subject of autism, Medicaid and IACC. Thanks Matt! To read this post, click HERE.

Thanks!

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

Idil – Somali Autism Mom & Minority Advocate

Alright, so this is probably one of my proudest accomplishments. And, while I don’t want to brag or anything but if I were a Caucasian autism mom – this benefit would have been named after me.

Anyway, at this point – I am just glad it is real and is happening.  To give some background history – Autism benefit is simply autism therapy for children up to 18 years of age that have a diagnoses of ASD (autism spectrum disorder). Minnesota’s autism Early Intensive Development and Behavioral Intervention (EIDBI) will be available to all eligible children receiving Medical Assistance coverage through fee-for-service and managed care. (fee for service – FFS is Medicaid/MA whereby the parent pays a fee based on their income. MCO is Managed care such as Ucare, Medica, Health Partners, etc and is usually offered to low income families)

Have you ever heard of Elizabeth Taylor; well I called myself the Elizabeth Taylor of ABA therapy. I have been divorced, bullied and belittled by so many of them. The one that really woke me up was in 2009 when an ABA provider told me when my son was 5 years old, he was too old for autism therapy. Then said he can’t be cured from autism. I remember I went into my car afterwards and cried like I have never cried in my entire life. Imagine hearing those words of there is no hope for your child. No parent should be told such cruel, in-humane and wrong words.  

I remember after I had no more tears saying to myself – I don’t know how I am going to do this, but I will drink lots of Somali tea to get energized and I will make sure no other child’s dreams are crushed and no other mother is devastated this way. Every child deserves equal opportunity to learn and progress. Every child has potential to reach their best outcome and their God given full potential.  

Well – that day is finally here. I have advocated high and low, wide and narrow for this new DHS autism therapy coverage which has so many good measures – I feel like finally relaxing. There is no other autism therapy coverage like it in the country thus far. Here are some simple benefits of this:

1. No more – Will an ABA provider ever tell an autism parent – it is their way or the highway.
2. No more – will an ABA provider tell an autism parent – they can’t cure their child’s autism. Instead each and every child will be treated to reach their full potential. And, there is no cure for autism anyway.
3. No more – will an ABA provider discharge a Somali autism parent because they could not understand the training and had no interpreter. The child and family’s primary spoken language, culture and values must be considered throughout the diagnosis, CMDE, individual service plan (ISP) and individual treatment plan (ITP) development, progress monitoring, parent education and support services and coordination of care. A language interpreter must be provided when needed.  
4. No more – will an ABA provider do one size fits all therapy. It will now be individually tailored and culturally appropriate. This means if you don’t want your child to learn xyz skill based in your culture, the provider can’t retaliate against you.
5. No more – will an ABA provider do their own assessment and diagnoses. Eligibility for the State plan HCBS benefit must be determined through an independent evaluation of each individual. Independent evaluations/re-evaluations will be used to determine whether applicants are eligible for the State plan HCBS benefit. 
6. No more – will an ABA provider tell an autism parent to take their child out of school, speech or other therapies or they will discharge you. Now collaboration is a must.
7. No more – will an ABA provider confuse you. Now we can ask for a care coordinator to help parents with the complex autism services and therapies their child will need.
8. No more – will an ABA provider say only ABA works. Now you can get much needed other therapies such as speech, occupational therapy, developmental therapies, etc.
9. DHS will monitor and implement changes as needed through both a system improvement process and coverage with evidence development process established through learning collaborative described in the quality improvement plan. This means we will change and grow as more autism intervention research is done and improved.
10. No more – will an ABA provider bully an autism parent – now there is a process for parents to make their concerns addressed.

In sum, I am ecstatic about this benefit. The 30 day public comment ends on July 2^nd, 2014 if you want to submit your comments to DHS. Then DHS evaluates comments rec’d and they submit the application to Federal government agency – CMS (Center for Medicaid and Medicare) which has around 90 days to respond. Personally, I have a good gut feeling that CMS will approve MN autism benefit application fairly quickly. I must say initially I was worried that managed care insurance companies that cover low income ASD families might pay less or have more strict rules which will for sure make autism providers not take MCO kids. But, DHS has assured me FFS and MCO fees, rates and rules will be the same and will be monitored for any unequal access. Therefore, I have zero concern about this autism therapy coverage.

I also really want to thank on the record DHS Commissioner Jesson, Deputy Commissioner Anne B, Asst Commissioner Colman, Director of Disability dept Alex B and Anne Harrington who has been the wind beneath my wings for so many years. Thank you all very very much! Plus DHS’s legislative folks @ Continuing Care dept whom God knows I have asked (ok, harassed) so many questions more times than I can count. Finally, I like to thank Regina prev deputy asst mental health commissioner who worked very hard in MN considering 1915i which has no cap vs 1915c which has a cap and is what WI has. I initially thought we should get 1915c and do what WI is doing for their autism families, but Regina convinced everyone otherwise and I am glad because I would hate for any child to be on a wait list for early intervention therapy. 

Here is the full language of the new autism therapy benefit by MN DHS. (it is around 50 pages long and has lots of autism policy language, but if you are an ASD parent – it will feel like reading an interesting novel)

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

Thanks!

Idil – Somali Autism Mom & Minority Advocate