Monthly Archives: August 2014

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