Monthly Archives: November 2013

Comments Off on Minneapolis Elections & What it means for Autism

OK, so – Tuesday Nov 5th, 2013 Minneapolis made history by electing its first Somali to City Council who beat an incumbent who was cocky in personality, but weak in policy.

Mpls also made history by having yet another minority into city council Blong Yang from North Mpls who I personally liked his ideas and vision that he shared on Somali Radio. 
Again Mpls made history by having more Somalis run for offices including Park Board which sorely needs faces of color as well as other posts. To those that did not win this cycle – try and try again. Your day will come!
For mayor – I am really glad Mark Andrew did NOT win simply because he had no idea about autism and how it is affecting many residents in Minneapolis. And, his campaign refused to listen to fresh and new ideas that could help with the many challenges facing autism families. 
By the same token, Betsy Hodges who did come to Somali Radio had a plan in at least one area of training Mpls police department about autism, wandering and safety. She also had other ideas of creating Somali women advisory council and hiring people of color as policy advisers that will reflect the city’s diverse faces. Personally – I liked Cam, but Betsy was my 2nd choice. 
One last person that I really liked also won – Jacob Frey for city council who I think resembles Sen Wellstone in his demeanor and how he values and validates everyone even those that disagree with him. 
Mohamud Noor, Director of Confederation Somali Community of Minn who ran against Sen Hayden and Sen Kari D (hopefully he will try again at least against Sen Kari who represents Cedar, well actually does not represent our community) was appointed to Hussein Samatar’s position as Mpls School Board member. I am sure he will fight for all kids and especially education gap because his own kids go to school in Mpls schools, unlike some on the board. 
I for one am very impressed by the new immigrants not just standing on the side lines while policies are written for them, but wanting to be at the table. This is the best and fastest way to decrease health, education, employment and autism disparity which Minn sorely needs help with.
I congratulate all of the winners and all of those from ethnic communities that ran and made history. 
Here is some news about Mpls making history:
Above words are my opinion and do not represent any committee. 
Idil – Somali Autism Mom and Minority Advocate

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Rapid Prompting Method (RPM) Created by Soma

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As a mom whose child is minimally verbal along with tons of others in the Somali community and around the country – I am always searching for what can help my son and others to communicate better and effectively.

We know that Picture Exchange Communications System (PECS) helps kids communicate their needs and wants. We also know that there are lots of new technology such as iPad and others that help children. 
Recently, I came across a method called RPM. This was developed by a woman named Soma from India who also has a minimally verbal autistic child. We always assume and wrongly that children with autism who are nonverbal can’t learn or can’t communicate. This is wrong by any measure of the word. And, Soma proved this for so many parents across the country and around the world. 
Soma first came to the U.S with the help of a Hollywood mom named Portia Iversen who also had a nonverbal son and lived in California. Portia also started Cure Autism Now which later merged with Autism Speaks. Soma gave so many people with autism a voice and an opportunity to learn. 
There are not still a lot of research done on RPM, but I have hope and confidence that researchers will get interested in this and let everyone see what we as autism parents see – there is hope for our kids who are minimally verbal. And, all children and adults with autism are capable of learning and communicating at their own pace to meet their full potential and their best outcome. 
Many school districts in Wisconsin and other states are now learning about RPM so they can use it to teach their students. I hope it grows and Minnesota becomes part of that growing movement.
It is our job as a society and advocates to make sure they do. As a mom, I have no doubt in my mind that my son is a gift from God who can learn and progress when given the opportunity to do so. 
Here are some links for RPM to help you understand better.
RPM clinic in WI called ACE (note they can come to Minn for workshops – let me know if you are interested and we can have our kids get RPM together in one workshop)
Above words are my opinion and do not reflect any committee.
Idil – Somali Autism Mom & Minority Advocate

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Comments Off on Autism Speaks – the Good, the Bad and the Ugly

OK, so if you follow autism blogs or autism news – you heard of Autism Speaks and their role in all things autism.

Let’s work backwards and talk about the ugly side of Autism Speaks in my humble little opinion.
The ugly:
I think it is ugly for Autism Speaks to keep creating this huge gap of services and intervention disparity. Here is what it does – they go state by state and only fight/advocate for the upper/middle class autism families that have private insurance to get coverage for only ABA (applied behavior analysis) therapy. What happens here is those that are low income who we know are disproportionately minorities usually have Medicaid don’t get the same and equal coverage as the private insurance kids do. In addition, there are other types of therapies that help children with ASD, but AS only has eyes for ABA. 
Remember in 2010 when the ACA (health care law) was being written and many big autism organizations lead by Autism Speaks kept asking the legislators to add autism behavior therapy as an essential benefit which was all good. However, when we asked AS if they could also advocate CMS rules changed so that autism behavior therapy was essential benefit under Medicaid – well they acted as though we asked for the moon or something. I mean – we know that most autistic individuals have Medicaid and the idea of leaving them to get equal access to necessary behavior therapy was cruel and is exactly what creates health inequity and health disparity – in case anyone was still confused. 
To make a long and hard advocacy on our part short – we fought this with a laser like focus by asking equal access to autism therapies for all. And, made it very clear giving therapy to the haves and leaving have-nots will create even more disparity. As a result, if you remember behavior therapy was taken out of the final ACA bill and CMS administrator along with Sec of HHS stated – if states wanted to add it they could and pay for it in both private insurance and medicaid through waivers such as 1915i or 1915c. 
I know Autism Speaks is trying a little here and even partnered with Black churches in Atlanta – but come on – that is like putting a cup of sugar in an ocean. It is still salty and not enough. What AS needs to do is go to each state with the framework and mindset of equality. That means actually meeting and talking to low income autism communities, hearing their voices and views then advocate state level change for both public and private insurance. Autism Speaks helps only kids with private insurance get intervention and treatment while it ignores low income kids with Medicaid. The idea of only helping select few who can afford the therapy is both unequal and cruel. 
There are still dozen states or so left and we as low income/minority families and advocates can fight Autism Speaks to either speak for ALL kids or get out of our state as we did in Minnesota. If you are a parent that lives in these states, you can do it. Start with your local house/senate representatives and your Medicaid agency to plant the seed of equality for all or none for no-one. Furthermore, just because AS put a state under having private insurance covering autism therapy does not mean it does. For instance, many of these states only approved very little coverage usually less than 30% of the market for autism therapy coverage. In Minn – less than 20% of kids with select type of private insurance are covered for autism therapy. But AS likes to claim all kids with private insurance have coverage and they do not. 
I thought it was ugly and bad taste when their hot shot lobbyist would come to our state of Minnesota and only met with non-minority communities then only testify change in the private insurance. That kind of policy is what creates unequal access to autism care and autism intervention and Autism Speaks is largely responsible for such disparity.
The Bad; 
Well if you read John Robison’s last Blog or follow autism news nationally, then you heard John (fellow IACC member) resigned from Autism Speak’s board for good reasons I might add.
First, the idea of speaking for autism and excluding those with the condition is really the Sandra Fluke theory.  AS must actually have autistic people in their staff, leadership and board.
2nd, Autism Speaks usually speaks for us without us including minority communities and that can’t be good.
Another example is Disney and their guest assistance card whereby AS told them it was OK to take it away from people with disabilities including autism without any real discussion with the autism community. Now, I hear they are trying to run away from that policy – but that is a little too late and damage already done. Imagine if AS actually listened to autism communities before it spoke for autism families. Well – maybe there is hope. Well – that is if their current president Liz Feld walks on the ground and not on air by actually engaging with autism families.
The Good; 
Again if you follow autism blogs and searched who hates autism speaks, you can read for days. By the same token – without them and before them Autism was not on anyone’s front mind. They have managed to put autism in front of law makers, policy advocates, media and even Hollywood. If you listen or read Suzanne & Bob Wright’s comments or views – their compassion for their daughter and grandchild comes through. You can’t fake that kind of passion and I don’t think they are. I think they mean well that maybe hire bunch of out of touch people especially in their family services. 
AS has funded many needed autism research and awareness including their recently funded Autism Project in Ethiopia. Though, I am still waiting & asked many times for AS to fund minority based agencies in the U.S that would target under-served families and translate their first 100 days kit into other languages. Not really hopeful with Mr. Bell in charge of services and AS President Ms. Feld being totally out of touch – my humble little opinion. 
Personally, I enjoy what Mrs Wright says including this last post that got a lot of attention especially from self autistic advocates. But if you read her words, she perfectly describes those with classic, nonverbal autism. I know as an advocate – very few speak for those that can’t and I am glad at least in that area AS spoke for thousands of children and their families who don’t sleep, don’t relax, fighting for everything and are sooooo tired daily. And, I thank her for that. 
As I tried to read the backlash to Mrs Wrights words from many big agencies including Arc and many autism bloggers – I became even more convinced that she was indeed speaking for those without a voice. There are autism families suffering exactly how she described with wondering, sleep, food, etc and etc. I can name tons of them in the Somali community alone. I really hope that those that have autism but are able to function and adjust well to life’s many challenges take into consideration there are many that can’t and need significant support and better treatments. Autism is a huge spectrum and all of these children/adults have very different challenges and variations. Therefore, we should not try to knock down if someone has auti
sm in a different way than another person because united we can stand up to autism and get the support, services and research needed for everyone. 
Overall – maybe there is hope for AS. If I can paraphrase their logo of it is time to listen usually aimed at law makers – Maybe it is time for Autism Speaks to Listen to autism families and autism communities including minorities and adults with autism.
Above words are my own opinions and do not reflect any committee or group. 
Idil – Somali Autism Mom & Minority Advocate

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IACC Full Committee Meeting 11/15/2013

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The Federal InterAgency Autism Coordinating Committee (IACC) met Nov 15th 2013 from 8:30am til 5pm. Long day with only two bathroom breaks and a working lunch to get through the national strategic plan update due end of the year by law. In case you wanted to watch the videocast, click here.

There are seven questions to this plan and the committee looked at what research has been done or funded based on each question’s objectives. There are over 70 objectives total – usually a dozen or so for each question that has been funded by a Federal agency or a private organization for the past few years. 
Each objective has total funding allocated, green means what IACC recommended has been accomplished for funding. Yellow means funding partially met and red means IACC recommendations not met. As you can see this is a snapshot of what has been done and funded or not for autism for the past five years. I am on sub-committee for services, policy and research that oversees questions 5 & 6. 
And my take here is we have done a lot and made huge progress for services especially for younger kids with ASD, and for assuring private insurance pays for it. 
However, for older kids and those with Medicaid – I think we have not made any significant changes or improvements. CMS which administers Medicaid is working on state of the states for ASD services that should be out and presented at IACC early 2014. 
I am glad that Federal agencies and researchers are realizing that more research of why disparity exist and how to address it is needed rather than the usual research of, is there autism disparity. 
YES – There is and we need solutions now. Dr Mandell who is an amazing researcher & Co-Chair for the services, research and policy committee at IACC has told the full committee his take which is exactly my view as a Black autism mom. We all have theories about disparity, but no research has been done to find out why it exists and what methods to use to decrease and eliminate it. So, I am excited about this progress and hope that researchers and autism providers collaborate and send ideas or proposals to NIH, HRSA and other Federal agencies that fund services research. In other words, don’t just wait for a grant to be offered – send ideas and proposals that program officers might not have thought of. They might just like your idea and fund it. 
I always hear this from researchers that they have ideas of research, but no funding. Send your ideas to NIH autism group or HRSA’s autism, etc. I am confident those agencies will listen and consider your proposals and might even fund. How great will that be!
Another outcome I am really excited and waiting for is current research being done by Dr. Amy Wetherby from FSU (one of our invited experts) who is working on different diagnostic tools for minority communities. Personally, I don’t think current methods of diagnostic tools are culturally appropriate tests for our families of color. In order for a child to reach their best outcome & full potential, the testing must be correct and appropriate. 
In terms of question six for adults – if you read the objectives and what research was done or funded. This is the only question where none of the objectives were fully funded. I think this is a huge problem since these young kids do grow up and become adults and we are not ready for that yet. 
I was also on planning group for question 4 and I really think we made significant improvements here because there are lots of choices and treatments available for our kids including ABA and Early Denver Start Model, Technology uses for nonverbal kids and much more. Nevertheless, I think not enough research done for alternative interventions and treatments including nutrition, vitamins, supplements, etc. I also would like to see more research done for symptoms of autism – not just behavior such as sleep, GI, obesity, wandering, safety and sensory. 
I think once we have rigorous research on the symptoms that often accompany autism then we can advocate for policy changes that is needed for children and adults to get adequate interventions and treatments so that they become productive members of society. 
Another area I am interested is question 7 which deals with surveillance. I think we need to have more diverse autism researchers and professionals. We also need to look deeper as to why for the ADDM surveillance system – Utah has the highest ASD numbers and Alabama has the lowest. This is where we get the current ASD rate of 1 in 88. Notice MN is not an ADDM site and less than 1/2 of US states have ADDM surveillance program. I think there are environmental factors as well as other factors that might drive the difference in rates among current ADDM sites. 
One good note here was from one of the invited experts from University of North Carolina Chapel Hill who said the difference for Whites and Blacks were getting to be even out and getting better because I wanted to know if the rate was different for minorities vs non-minorities. According to CDC who funds & monitors the ADDM system in the country – the difference of diagnoses between rural and urban also seems to be getting more even. But they didn’t know why the rate differences in different states. 
In sum, we have come a long way, but have a longer way to go was my take. I also really want to thank of all the parents especially moms that travel miles to come and present during the public com
ment time. It is parents like you that drive change in research and policy. I am very grateful for your comments and views. I would encourage especially Minnesota parents and researchers to send their views and comments since there are hardly any from here or even from Midwest states. IACC represents the whole country – and it would really help to hear from everyone.
Above words are my opinion and do not reflect IACC or any committee.
Idil – Somali Autism Mom & Minority Advocate

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Comments Off on MN DHS Tries to Tackle Health Disparity – will it work?

Alright, so if you follow health disparity and Minnesota then you heard, we have one of the worst health disparity for minority communities in the country. Even though Minnesota enjoys being one of the top healthiest states. 

Why the dis-connect and why is disparity so high here. Well – many reasons is the short answer. 
I think one of the main reasons is the lack of actual reporting by the sleep-by main stream media who seem to neglect reporting on health disparity for many reasons. One of them being they themselves lack reporters of color that could feel and see what communities of color see and feel and would bring it to the front burner. 
I also think many of the policy makers, policy advisers and policy aides in this state are almost all non-minority. Such gap is guaranteed to create a gap in health care delivery and health care access.
One more reason could be the actual Medicaid agency Minnesota Department of Human Services has zero (that’s right) zero assistant commissioner of color, and zero policy advisers of color to the commissioner. Furthermore, health and human services committees in both the house and senate sorely lack faces of color in their legislative aides and committee administrators. I think Abou Amara might be the only CA in the House of Reps in Minn. (how sad and wrong)
In other words, those making, writing, thinking and implementing policies that affect most minority communities rarely reflect such faces. In my humble little opinion – that is guaranteed for a recipe to health disparity and health access gap.
However, there is some good news in this horrible tunnel. Last year – 2013 session the senate and house passed a bill to tackle this. HF310/SF246 – Cultural and Ethnic Communities Leadership Council passed and signed by Governor Dayton who also sorely lacks minorities with a backbone to fight for those communities. 
This council picked its members and DHS has released a press release on it. Here is the link.
As you notice, it has a very impressive membership including many shakers and movers regarding health issues in the land of 10,000 lakes. 
After reading this – I was happy yet confused. Happy because I think many of the members really care and want to change the status quo which sucks – quite frankly. One person that confused me was Rep. Huntley, Current Chair of Health and Human services finance in the house. Why you ask?
Well – I mean unless we are having amnesia here. Rep Huntley pushed and allowed the very bias autism bills that the queen of autism disparity Rep. Norton has introduced for years now. I guess if Huntley really cared about equality – then he should have told Norton to go back to the drawing table every time she brought a disparity creating autism language, right?
Common sense would tell us that – but I am learning that often common sense takes back seat to partisan politics based on mostly arrogance and ignorance in Minnesota. At any rate, it will be interesting to see how Rep Huntley does here and what he recommends because he for now holds the gavel for all health and human services in Minn house of reps.
Some of my fav folks appointed are Rosen, Benson, Mack, Abeler, Sheran, Davis, Samantar, McDonald and Lourey. I am eager to see their recommendations and how they will carry that in their regular life in advocacy and committees. For instance, in Sheran’s and Lourey’s committees – while I don’t read minds – their body language always said “I care and I want to make a difference”. They have one of those very rare genuine characters for a politician. And, of course, I can’t say enough good things about Abeler, Mack, Rosen and Benson. They are always compassionate, fair and straight to the point in everything. Liebling – it is hard to read her. She can chop you to pieces, she can also offer an amendment for autism equality in the last hour. Maybe feisty yet reasonable? time will tell here. If you remember I was protesting her in HHS Policy committee with my little posters, yet I was surprised when she offered the same equal language for the low income MA autism kids in HHS Conference committee. 
Finally, I hope these members also think about the fact that MA/Medicaid pays a lot less to providers for services that the same provider can make a lot more if he/she takes private insurance. 
In other words, if you are a provider and MA will pay you for xyz medical service $50 and for the same xyz medical service – an insurance company will pay $100. Which patient do you think that provider will take. The one that will enhance their bottom line. This is why many providers limit or don’t take patients with MA who are unfortunately disproportionately minorities. Not really sure how to fix this, but this kind of low MA pay to providers prohibits good medical care to communities of color. I asked this very question at IACC’s CMS rep couple of years ago and she had no answer as well. 
Another reason might be the fact that the millions of dollars spend annually to educate about preventive and educational materials for medical care are disproportionately given to non-minority owned agencies who often don’t know how to better out-reach or sub contract to inferior outreach workers. 
This council is being coordinated by Antonia Wilcoxon at MN DHS who is probably one of my very few favorite folks there. So, I am optimistically hopeful they will come up with not sugar coded campaign slogans, but hard core and real recommendations that produce reduction in health disparity and promote health equality. 
Idil – Somali Autism Mom & Minority Advocate

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Comments Off on Dawn Steigauf Wrong choice for Bloomington Schools

In just short few days from today on Nov 5th, 2013 – elections will happen for many areas in Minnesota. While each election area is very important, one of the important ones are elections that relate to our children.

Many school districts in Minnesota will have school board elections and one of them will be Bloomington school district. 
Now, past MN Autism task force chair Ms. Dawn Steigauf is running for school board post in Bloomington schools. Here is why I think voting for Dawn is the wrong choice.
First, Ms. Steigauf lacks the experience and expertise needed to be a board member. She has no prior education experience relevant to such important task that will affect thousands of children and families. 
2nd, Ms. Steigauf was very adamant in her views of exclusiveness and uninterested in minority involvement when she was chair of the Minnesota Autism Task Force. In fact, she purposefully excluded any minority agency when writing for potential task force members language, while including all white autism agencies. I think that level of thinking and prejudice is both wrong and is one of the main reasons for autism disparity for children of color in Minnesota. 
3rd, Ms. Steigauf’s voting record on the autism task force was always for the upper/middle class autism families. In fact, she only wanted to get private insurance coverage for children and leave low income autism families out in the cold. I remember having a heated phone conversation with Ms. Steigauf and basically telling her that I will fight her til Timbuktu if low income autism families with Medicaid are not part of the task force coverage recommendations. Such simple equality should not be fought hard, but it was hard and difficult with Ms. Steigauf as the autism task force chair.
4th, Just recently in summer 2013 – as a member of the current MN autism task force, Ms. Steigauf voted against proudly a support letter which wanted to include sharing of Federal autism grant with minority based agencies. Imagine how that will relate to any school board voting. 
5th, Not only was Ms. Steigauf proud of her bias vote, but she defended it by trying to remove those that opposed her and wanted equal access. I think that speaks volumes of such dis-connect of reality and Ms. Steigauf’s blatant bias views.
6th, as it was demonstrated when Ms. Steigauf was trying to get current board members’ vote, she fell short. Steigauf was the first to fall out of the voting.
7th, One of probably least compassionate moments was when she kept complaining about a Somali autism dad with two classic autistic children who had a heart attack twice of why he was not coming. I am sorry, but that is cruel and inhumane. Autism by itself is hard, but when you add two heart attacks it is unimaginable. Fortunately, Sen Pogemiller who appointed that member told Ms. Steigauf to back off because he had no intention of replacing that member who was already suffering. Imagine the kind of heart you have to have to complain about an autism parent of two autistic kids & two heart attacks, Unbelievable. 
Finally, if you are thinking what do autism policies have to do with school board policies, let me connect the dots. As I said in many posts, Minnesota education gap for disparity between minority children and non-minority children is 48th worst in the country. 
Therefore, electing someone who will abuse her power to vote against under-served autism families will most likely do the same or worse if she becomes Bloomington school board member.
The school board makes many important decisions including hiring, finances and education policies and electing Ms. Steigauf will only make things worse and not better.
Please vote fairly and wisely and do not elect Ms. Steigauf. She will only hurt the needs of so many children whose educational needs are already behind.
As usual, above words and my opinions and do not reflect any committee.
Idil – Somali Autism Mom & Minority Advocate

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