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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

At 1am on Thursday, May 16th, 2013 – Autism history was made in Minnesota when Health and Human Services Conference Committee unanimously voted for coverage of Autism ABA and other development therapies for the poor and MA/Medicaid autism family that is disproportionately a minority. I am feeling tired, but ecstatically happy and overjoyed. This will assure children will get autism therapy up to age 18 regardless of if they have fee for service (TEFRA) or Managed Care Medicaid. This law will also eliminate the current double standard coverage for the have-nots. Equal access, equal coverage, and equal rights prevailed, what a feeling!

We have been fighting this since the 2010 session consistently, persistently with a laser-like focus with simple advocacy and leg work.

Background History:

State legislatures started this session with lots of ambitions for autism. The wealthier middle and upper-income families were more coordinated, hired K street-type lobbyists and even a Hollywood-type publicist to get state funds from the Health and Human Services budget to pay for ABA Autism therapy. Many of the ideas were driven by few well-off for-profit providers that wanted to keep their bottom line up.

It got interesting and heated when HHS Finance had to cut at first $150 Million from its budget then due to the new taxes that went down to $50 Million – how and what other poor, disabled, or elderly community will lose to benefit the middle and upper-income communities. That was the $25 Million question?

We in the Minority Autismville families realized early to play the game in which we would hold politicians to their policies and how it will affect the under-served and overwhelmed poor and minority autism communities. Don’t hate the player – hate the game.

As you all know, all three MN branches of government this year are held by one party which meant whatever came out of the state Capitol – they would have to own it, explain it, and defend it to ALL Minnesotans, especially their core voters. As a result, Governor Dayton understood this game early and allocated $12 Million for autism intervention therapy. It is worth noting that previous legislators from different party charged DHS to recommend a better and more cohesive method of how our state should pay and fund early intervention autism therapies. Thus, HSAC’s recommendations were pretty good despite the fact that I was the only person of color to ever participate and HSAC has zero minority members – that is right zero look like us and they decide not just autism policies, but so many health policies for DHS and the state.

The House: What did they do?

Well – they went wild is putting it mildly. Minn House of Reps kept having bills and amendments that were all over the place in coverage, fairness, equality, and cost. It was very difficult to even get a reasonable fiscal note. Initially, equal access for the poor MA autism family who is disproportionately a minority was out of the window and was never even considered. There was no autism agency of color that participated, had input, or was listened to. In fact, those that are not for profit were even for the wealthier autism family. Clearly, as a Black autism mom and advocate, this was frustrating and disturbing at the very least. I would say Rep. Clark and Rep. Abeler were the only voices of reason here. Most did not ask questions of equal coverage, research, or fairness. Few asked about the cost in the finance committee, but then voted for the expensive state-funded private insurance coverage. I was mostly confused here. Many would ask here “why were we so frustrated”. Really, asking us that is like asking an Eskimo why they are cold.

The Senate – What did they do?

Well, in general, the Senate is more approachable and sincere. I would say with the exception of the Commerce Committee, all of the other committees chaired by Sen Lourey and Sen Sheran asked questions, amended the original private coverage bill, asked for fairness and equality coverage. And, in the end, they took off both public and private coverage. They said they did not have money for either one. Well, at least this body is fair. My other favorite thing was they actually asked testifiers in the order they requested, they let everyone finish their thought and testimony, and they asked for expert information from DHS. Even Sen Hayden pretended to care here about his poor and MA minority autism families.

The Governor’s office – What did they do?

Well, I am not sure how to articulate this – all I can say is that there must be a higher power, that is looking out for the under-served autism family and in fact all autism families. They say what makes a politician great or bad is their staff and Gov Dayton just happens to get one of my favorite health policy folks in the country. As a result, his office worked tirelessly to figure out a way for all autism families to get appropriate autism therapy and intervention. First, they supported DHS’s language and the Governor’s proposal.

Then they worked with the wealthier group and came up with a very creative method of assuring autism coverage that would not have any fiscal note for the HHS budget. I was very pleased with their approach which to me seemed inclusive and fair-minded.

Who can ask better – really.

Summary:

I would say the poor, MA/Medicaid most likely minority autism family that could not afford a lobbyist, a publicist or a red T-shirt-wearing gang won and prevailed with simple good old American activism. These families will now have starting early next year access to ABA and other developmental autism therapies for up to age 18 with no cap in enrollment or allowed amount. This is amazing for our families and our communities of color in Minnesota. This kind of coverage does not exist for the low-income autism family anywhere in the country. So, huge win and a difficult journey but a fantastic end. Awesome!

Politically since these folks are politicians – I would say Gov Dayton came on top because he said what he meant and meant what he said. Rep. Abeler kept his promise from last year and continued this year. And, Rep. Clark was our punching bag for the wild house and was always kind and welcoming. The most pleasant surprise came from Rep. Liebling who offered the final amendment in literally the final hour around midnight, (really tired now) before the final vote to assure the criteria and language for both public and private mandates were similar to eliminate differences & disparity so that we don’t have to decrease it later. In other words, preventing disparity & discrimination from the beginning is always a better policy than decreasing it later.

I have to say I was shocked by this in a good way.

The bottom line is we need to learn to vote for those that deliver better policies for their voters in action and not just preaching election words. Quite frankly, I would rather have a politician who talks like a sailor and has a heart like Mother Teresa and a mind like Nelson Mandela. In addition, the words, decrease disparity, minority, and even Somali were said more this session than I heard in previous sessions, but if they are just words and not good preventive policies then (hadal badani haan ma buuxsho is my take). Words are meaningless unless they are backed by meaningful actions and policies.

Regrets – None from our corner. However, I think if the middle/upper wealthier group worked with the poor and minority side, we could have achieved more in a united front. Collaboration and cooperation are always better than bullying, dismissing, and intimidation. I hope they think about that next time. Our kids are just as American and MA/Medicaid autism families are financially vulnerable which means helping your in need fellow American brother/sister will go a long way in the end. To the red t-shirt wearing gang who underestimated our efforts – don’t hate the player; hate the game. We won by using simple leg work advocacy that was focused and persistent until the end.

God Bless!

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

Idil – Somali Autism Mom (determined to fight for equal access to autism services from every mountain, river, and valley – together we can do it).