Monthly Archives: May 2014

Have you ever heard of the saying – icing on the cake? I have and I usually know there is cake and the icing is a bonus.

I am not going to complain about DHS in this post about their icing on the cake for many areas in autism. In fact, I could not ask for more and I am done in my advocacy with DHS of assuring autism providers are trained in culturally and linguistically appropriate services, parents have a system in place to make their concerns and there is an objective care coordination to assure what is best for the child is going to happen. In other words, no more ASD parent will be bullied or belittled. Believe me when I say, I was bullied and belittled by some ABA providers and some might consider me a bull. Imagine how other autism families felt.

As a result, I have advocated high and low to assure what happened to us never happens to another family. And, I am happy to report all of these things have been adopted by DHS last year and especially this year’s legislative session. So, all is good on icing on the cake. And, I am very grateful to DHS leadership in taking the bull by the horn (if you will).

However, there is a problem because DHS had the audacity and the nerve to say to us there is no cake in applying the 1915i autism waiver benefit. Now what now? let me repeat that as I screamed when I read that sentence – now what now?  Apparently the state Medicaid agency wants to apply 1915i autism waiver for fee for services autism kids. Let’s explain this – fee for service autism families are usually wealthier and mostly Caucasian kids who now get ABA through FFS by calling ABA skills training. Are you following me so far.

By the same token, managed care kids who are disproportionately minorities get denied for the same ABA or skills training by MCO (managed care organizations) such as UCare, Medica, etc. Because of this cruel and illegal double standard – we have advocated, begged and asked almost four years for the state medicaid agency to call skills training ABA because that is what it is and cover it for ALL kids, especially for low income kids because after all Medicaid was designed for low income families.

Personally, I have been told by DHS yes and yes and yes the new benefit will be equal for all. Then comes their 1915i application draft which said this 1915i autism benefit is for fee for service because managed care is under different authority. I am lucky if I didn’t drop dead when I read that, really I am not kidding. What does not kill you makes you stronger. So, calmly, (not really, I was screaming) I asked DHS are you kidding me what the hell is this sentence. Initially they said – calm down that is why we want public input and comments. I wasn’t sure how to respond to that at first because why would they even ask any public person if a bias policy is OK. Does that mean if the public is OK with it then we should continue to discriminate against the low income autism families that Medicaid is for? What the heck? Sorry I meant what the hell kind of response is that.

Then they said – well we plan on asking the MCO’s to adjust & add the same coverage as FFS when their contract is up end of the year. I think I had a mini meltdown when I heard that. Let me put this in layman’s terms. DHS telling me that is like a husband saying to his wife, I am sorry as he beats the crap out of her. Better yet, it is like Mike Tyson saying to Evander Holyfield – let me say something to your ear. Come on – we are not stupid.

Do you know how many DHS people told me they are working on MCO’s to correct their contract and include autism therapy (ABA). Over and over I have been told that and nothing was ever done which is how this 1915i came about from CMS. And, now DHS says trust us we will be fair this time. Fool us once, shame on you – fool us over and over, shame on us.

I for one am NOT buying this. The fact that MCOs are under DHS and DHS has not corrected this problem for years is reason enough to not trust them there will be cake for all of this icing.

Icing is only good if there is cake under it.

In sum, DHS can not and will NOT discriminate against low income autism families by only writing FFS in this 1915i application. How is this for irony, we get discriminated in our own ideas and advocacy. How do you like them apples, and we wonder why there is racial autism disparity.

I am not sure how DHS will fix this, but they have to or the gloves are coming off and we are not asking. We will take the same route that Florida and Washington state did when those states also discriminated against low income autism families.

To DHS – you want our public comments for a bias policy. We can not and will not accept, that is our comment and you need to fix this now before you send to CMS because we will take our fight to them as well. No more bias autism therapy. In paraphrasing the words of George Foreman – we are not going to take it anymore.

Thanks!

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

Idil – Somali Autism Mom & Minority Advocate

As we all heard by now, GAO has done a report on Autism and Federal Activities including IACC. And, depending how you read this report – you either really ran with it or you saw it as I did. I saw this report from the lenses of a regular autism mom. We can all improve in autism research and in every area. It said autism research had the potential to be duplicative and some just ran and ran with it without regard to scientific research. Then they went to Congress with it and we all know Congress is good at putting on a show.

First, let’s explain why Rep Issa is all of the sudden interested in autism. Rep Issa has never authored or cared about autism issues until one of the members in his committee who was retiring in 2012 requested an autism hearing. Hence, the fall 2012 autism hearing in Issa’s committee. Then according to autism blogs and chats – Rep Issa took $40,000 from some wealthy autism parents – some of whom are from Minnesota. Then the game changed and autism became Rep issa’s interesting project.

2nd, in order for any research to drive policy or medicine – it must be replicated and duplicated. For example, advocates say ABA must be covered by insurance because it has replicated and duplicated research. Get it – duplicated and replicated scientific research drives policy. Otherwise, policy makers would not approve nor will payers pay. Therefore, autism research must be duplicated and replicated. Thus, autism research should not have the potential to be duplicative, but should be duplicated by multiple agencies and researchers to see if the outcome/results are the same, varied or changed, etc. Sometimes a messy and uncoordinated scientific research finds the answers. I am no scientist nor play one anywhere, but as a policy advocate I depend on replicated and duplicated research to move a policy idea.

3rd, Do we need more environmental research looking into autism cause – Heck yes. But this does not mean we should eliminate what little we have and make Congress make a fool of our autism community. Yes, we are now the fools – we have children who need medical attention and we are too busy picking and working against each-other. What does that say about us who are suppose to be the adults in this. Think about it.

4th, GAO works for Congress and they are the ones that asked them to look into this and picking or belittling Dr. Cross is not the answer. Speaking of waste – imagine if GAO was asked to look into autism and racial disparity and HRSA’s role in it. That would be an interesting report.

5th, Dr. Insel has done more for autism than anyone else and I still can’t figure out how he remains so calm. Insel has said time and time again parents are on fire and need help now. He said we need more environment research, he is part of the newly planning group on co-conditions of autism. I am sorry, but NIMH is not just about autism rather all mental health conditions in the country and Insel talks more about autism than any other mental health disorder. We can’t keep biting the hand that has helped us. I for one stand behind and support Dr. Insel 100%. And, no it is not because I am on the IACC – I was just a regular mom when NIMH and IACC coordinated Somali autism research. So, give me a break and stop saying IACC does not coordinate.

6th, IACC does not do research nor fund it. They recommend and yes the process can improve. IACC can write new objectives that reflect today’s autism needs because some of the 78 objectives that are now there are outdated and must be updated. So, of course – there is room for improvement in better and targeted objectives. There is room for adding more federal agencies that fund or do autism research into IACC coordinating efforts. There is more room to put out more funding opportunities for racial disparity, adults, teens, environmental toxins and how they affect different genes, why certain ethnicities are higher or have more profound autism symptoms, better housing, better and targeted employment for all autism individuals across the spectrum, etc and etc. But to call and ask Congress to kill the only autism legislation we have is irresponsible and wrong. We need to improve not eliminate. Gee I wonder where I heard that before.

7th, I would say to those that are soooo interested in vaccine research and don’t believe what has been done thus far – to put their money where their mouth is and fund it themselves. If you all think what has been done is inadequate then do it yourself – many of you are wealthy and can fund it. So, why not. Instead of eliminating what little autism has. Don’t get me wrong because I totally understand when your child is developing just fine and you do something then his development changes or he loses the skills he had. I get the natural instinct to make the connection. This is why many in our community are choosing to skip vaccines and the best MN state health dept can do is scare parents with measles which is like scaring Joe Fraser with a toddler punch. So, yes we as a nation need better way to outreach to parents whose children regressed and do rigorous research on what other environmental factors are involved. Nevertheless, I still don’t think eliminating what little we have in Federal autism is the answer. We need to be strategically smart.

8th, I am not sure why we are picking on President Obama. He announced $100 million for brain research including autism on world autism day with NIH director. Obama is not a researcher and has put autism on the front burner. Plus ACA took off pre-existing condition, again biting the hand that has helped us is irresponsible.

9th, One of the committee members said yesterday @ the hearing – Aids and Cancer have more funding than autism even though more people are affected with autism because they are united and have better lobbyist. Why can’t our autism community unite and lobby together.

10, Finally, a community divid
ed is a community lost & not funded, and the very children we are trying to help suffer the most. Please think about your actions before you take them – millions can be affected by them. Let’s unite for all ASD kids, adults and families. And, let’s not scare off researchers or policy makers.

The Hill had a story on autism feud:

LBRB blogged about this as well among many others.

Thanks!

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

Idil – Somali Autism Mom & Minority Advocate

Alright, so we have prevailed again at the MN state legislature this year. I think it was all due to my new heroes Minnesota department of human services Commissioner Jesson and Chair of Senate Health and Human Services Finance Committee – Sen Lourey. 

Have you ever imagined what it would be like to combine the kindness of Mother Teresa and the racial equality of Nelson Mandela. Well – wait no more, we got that combination helping us with autism this legislative session at Minnesota Capitol.

I think Jesson is one of the kindest people I know that is in a powerful position with an action plan and Sen Lourey will never let inequality go through his committee. I love how his face changes when he is reading unequal language in a bill – it is subtle, but I can tell, he is irritated. He is honest, to the point, votes based on fairness & does not play party politics. Who can ask for anything more.

I must say though that I was worried this legislative session because while I am the only vocal minority autism parent at the Capitol, there were always powerful and smart people helping me behind the scenes. And, this year I did not have any of them. Mohamed Jibrel left Minn, Dr. Fahia left Minnesota and Hussein Samatar (God Bless his soul) passed away. All three left my heart and mind a hole that I could not fill even If I tried. They would advise me on how to approach a politician, how to ask or annoy (whatever worked) and how to articulate our message of our kids are just as American as Apple Pie and as Minnesotan as its 10,000 lakes – so why should they get less or inferior access.

They would also when necessary call, email or go with me to any meeting or place. My favorite is when they would tell policy makers that they fully and without reservation support Somali autism parents as well as other under-served families. One time Hussein said if our autism parents are happy then our community is happy and that totally changed the mood of the meeting.

And, this year at the Capitol – I felt alone and lost without them.

Nevertheless, with the help of my new American heroes Sen Lourey and Commissioner Jesson – good policies and sharing of resources passed and they are;

1. Inter-agency Autism Resource Website $500,000 one time appropriation. This will help parents, families and providers that want to know any and all things autism from evidence based therapies to resources. I think this is fantastic and will help all of us.

2. Culturally Appropriate Autism Provider Training $530,000 initially then $218,000 and $133,000 into the next biennium. This is important because ALL MN Autism providers will be trained and hopefully certified in CLAS (culturally and linguistically appropriate services) Federal guidelines that most don’t know or follow now.

3. 10% reduction for TEFRA fees for ALL families with a child with a disability – not just wealthier autism families. I see this as a win win for everyone rather than me me attitude.

4. Respite Services Development Grants $2.5 Million. This was the most pleasant achievement because we are all in need of respite and now we can all have access to this based on the family’s need and circumstances.

5. Disability Housing assistance for families in housing crises that have a child with disability and are facing eviction. This was not advocated by me, it was the idea of Mariam Egal with the help of Somali parents that face evictions constantly due to their autistic child’s behavior. Kudos to them for speaking up for their kids. Thanks Cascase for bringing this to our attention. And, thanks to Rep Clark for writing and pushing this legislation into passage.

In a nutshell, we did great this year! Sadly this will be my last year advocating at Minnesota state capitol. I know some of you are celebrating – I understand. I am a bull who never heard no even when I was told no. And, I was told NO many many times. For some reason, by the time that no landed in my ears – I heard a maybe then I never left until I got a yes.

Anyway, we all must leave at some point and I rather leave while still effective and before I become the true angry black autism mom.  Plus, DHS and MDH both hired minorities in their autism area to train and educate other minority autism parents on how to help and advocate for their children. I really hope they (the ones hired which we worked our butt off to make it possible) remember why they are there and who they are there for. Because the goal is to have more minority and diverse autism parents advocating for their cause and their children. And, please remember – united you will be able to negotiate but divided you will each beg and lose in the end.

Well – there you have it my last final advocacy work at Minnesota State Legislature. It has been fun and learning experience for me. I really hope that our communities of color show up there because we are either at the decision making table or on the table being chopped. The choice is ours and we can’t vote then go to sleep which is what most minority folks do.

Here is the final HHS (health and human services) supplemental budget spreadsheet that passed out of conference committee. Autism line items start under dept of human services around line 156 or so. It can be confusing to read and understand these spreadsheets, but as you can see the first area is the house language then the second area is the senate language and the final lines are the actual items passed through conference committee negotiation between house/senate and governor because he has to sign it.

Here is the final committee reports for the legislations passed via conference committees and HHS language is in HF3172 which has the actual language that accompanies the funding. I suggest you read this and see how your area of interest did in funding and policy changes, if any.

Finally, I would like to thank in addition to Commissioner Jesson and Sen Lourey – everyone at DHS leadership (Loren, Anne B, Anne H, Alex, Heidi, Laura, Amy D, Antonia) that helped us along the way. We could not have done this without your support and kindness and for letting me ask you questions. (OK – yell mostly) I also like to thank all of the Senate conferees and Rep Mahoney and Rep Marquart from the House side conferees who pushed for equality in the end. And, Abou who is the only Minn state legislature’s committee administrator that is African American. Abou is not even in health and human services area, but to have someone that looks like me to even ask about the process was priceless. 

Let me explain this to those that are now saying – come on. To be the only Black person in these committees is like being in a stadium full of men watching football. Even if I liked or understood football – I would still feel alone and out of place.

Personally, I think it is sad to have such statistic and I hope communities of color learn to connect their votes to what happens at the capitol and in congress because it is even less over there. We must reflect in staff, policy advisers, legislative liaisons and legislators – or disparity will be our middle and last name – period.

Thanks so much to everyone from the bottom of my heart!

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

Idil – Somali Autism Mom & Minority Advocate