Monthly Archives: June 2013

Comments Off on How Do We Get an Invitation – Commissioner Ehlinger

First, let me say for the record – I was pleasantly surprised when state health department commissioner invited me to lunch. After all, I am just a mom and a rookie autism advocate at best. 

Then I thought – oh boy he is going to yell at me for my east coast flavor blogs which I say how Minn health department has failed miserably in minority health from autism to everything else. In fact, for over ten years, the state health department has done a horrible job in their EHDI (Eliminating Health Disparities initiative).
But in all honesty, it was a nice lunch and I like Commissioner Ehlinger a little now which makes even harder to blog about his policies. (note to self, don’t have lunch with Jesson)
All kidding aside, I would like to know as a Black autism mom – how exactly do we get an invitation from your child and maternal health department? They for some reason see communities of color as inferior, they always neglect or dismiss our ideas and needs. For over two years now, we can’t even get them to follow the simple CLAS standards in their main phone line or website. Very easy to do, but defensive and resistance has been their view from every corner. Now, MCH has always been like this even under Commissioner Magnan/Pawlenty administration. The difference was with them – we were able to get someone from the Governor’s office to put them into shape or Commissioner Magnan took charge. Dayton’s office always tells us (well let’s not even go there) and you simply keep referring us back to them. This is not working Dr. Ehlinger because children are being neglected and families are desperate to learn about autism services and resources.
So, I ask – how we get an invitation to be a partner rather than a 3/5th of a community?
Below pictures are only few decades ago and while the tactics were different and more direct racism. Today’s bias is you are not good enough, not qualified, Let’s fund us to tell you about you, we forgot to tell you about this resources, service or include you or my fav – we care about diversity. But our staff, our grantees and our process is not really diverse, but we really really care.
At some point, you as the head of the state health agency must say this is not working and we need not talking at communities of color, but talking with and partnering with them. We are simply tired of mainstream folks talking and doing for us, about us and without us. 
One of my questions for you was – how come you did not hire an assistant commissioner that was African American given the horrible disparity in our community. And – you said “you asked 5, but none wanted the job”. Think about the fact that you only know small number of qualified African Americans. Think about the fact that there is never ever ever a person of color policy adviser for MDH at state Capitol where all state resources and decisions are made. Think about the fact that even in MDH refugee dept lacks faces from the communities it serves. It is like trying to catch your tail. Students are never hired, staff is never promoted, our community is never given the first chance – so how can they possibly make it to the commissioner level? They can’t – right. No one is born an expert, people are given opportunities and it just seems that at MDH equal opportunities in employment, in grants, in policy is scarce and unequal.
So, I ask again how do we get invited to have equal access and equal treatment under your administration? What do we need to do to overcome subtle bias and persistent prejudice that still linger and enhance health disparity and health discrimination at MDH?
Thanks much.
Idil – Somali Autism Mom  – determined to fight for minority autism families and children from every river, valley and mountain. 
[© Ivan Massar]

Through drenching rain
and freezing cold, I will overcome.

[© AP photo]
[© Danny Lyon]
[Photographer unknown]

Category: Uncategorized

Comments Off on Thinking Out-Loud – Open Letter to Dear Sen. Eaton

First, let me be clear that this blog and these are words are solely mine and do not represent the Minn autism task force. 

Alright, so every since last night’s very interesting in a intimidating kind of way – I have really been thinking out-loud as why so many people here in this state have so much resistance to simple equality in autism policies. 
Sen Eaton who represents a heavily African American suburban district said something that made me think out-loud. Sen Eaton said she finds some of my words in my blog “offensive”. She also probably found my testimonies against her wealthier upper/middle class autism coverage the same way.
So, I started thinking out-loud. 
Dear Senator Eaton, while I thank you for your opinion, if I were you what I would find offensive is your autism policies for only the wealthier most likely non-minority autism coverage whereby you only wanted to get the state pay for tens of millions of dollars for their children’s early intervention ABA therapy. By the same-token you did not introduce similar bill for the low income autism family. In fact, you did not even ask one single minority autism agency or parent testify for your legislation. What do you think that says to your voters in your district?
The sad irony is this bill was for mostly people who were not your voters. The ones who put you in office were sadly sidelined and neglected by this legislation and coverage. 
If I were you, I would also find offensive the fact that there is so much autism disparity and even in more general mental health for communities of color which you had some bills talking about that. Yet, you neglected to connect with mental health agencies that represent communities of color. 
I guess my question would be if you really wanted to know the feeeeeel of the weather in Miami then you talk to someone from Miami. 
I keep referring to the Self Autistic’s fantastic logo of NOTHING ABOUT US, FOR US, WITHOUT US. Imagine if so many Minnesota state legislatures learned and understood that lesson. When writing legislations or bills that will affect whatever issue – it might be best to actually talk to the communities and people it is affecting. It will save you so much debate and headache – I assure you. 
At any rate, Sen Eaton is coming back in 2016 for another minority vote in her district, we need to take count on her legislations, her ability to speak on our behalf and pass bills and policies that actually made that district better. Otherwise, voting for Sen Eaton again will like like milking your camel on a beautiful sandy beach. Worthless!
Please think about that to my fellow minority especially those that live in this district because we can’t just complain about state legislatures if we are not willing to hold them accountable to their votes and policies.
God Bless!
Idil – Somali Autism Mom

Category: Uncategorized

Update on HRSA and MDH’s Autism Grant

Comments Off on Update on HRSA and MDH’s Autism Grant

OK, Minnesota department of health finally sent today their grant of $300,000 to HRSA for the state implementation to assure early screening, diagnoses and services for all children throughout the state.

Initially, as I stated in previous blog – MDH’s child and maternal health only wanted to use more generic and useless words of yes we will follow CLAS guidelines and go through yet another mainstream agency. 
Let’s dig this deeper, CLAS (culturally and linguistically appropriate services) mean that families are suppose to get information in a manner they understand. This means, if someone does not read or write, then they should get such information in a way they can comprehend. This means for a new immigrant community much like previous immigrants that came to America – not everyone is able to read or write even in their own native language. Therefore, Yes – it is the responsibility of the state health department to make sure they distribute autism health information in a way families can understand it. There are those with small minds that would say (well this is an educated society and everyone should read) Are you kidding me?
Minn has #48 education gap for minorities, most children of color are not able to read or write at grade level and these are children that were born here. But we are now talking about parents who migrated here from war countries with little education system, so YES – the state health department has a moral responsibility to support these autism families that it has neglected for years. 
At any rate, after intense and long negotiations with MDH’s CMH with the help of state medicaid agency and education dept and the Governor’s wonderful policy adviser (I can’t say enough good things about Lauren) – there will be $70,000 allocated for minority based communities to outreach to those families as well as rural autism families. Awesome!
As a minority advocate – I know the need is so much greater, but Rome was not built in a day and this is a good step forward in the right direction of eliminating autism disparity. 
In addition, ICI will finish learn the signs and act early material and will distribute it in a manner that Somali autism families can understand it. And, yes that means they will do it ORALLY.
I would like to thank everyone that supported equality and fairness from the gate, especially Governor Dayton’s office, commissioners and assistant commissioners of DHS and MDE agencies and Council of Black Minnesotans. We could have not done this without your support. We also thank HRSA for their technical assistance and receptive guidance. We need to have better autism policies so that minority families are not always fighting with tooth and nail for every little services. 
God Bless!
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on Thinking Out-Loud Awareness to Change in Policy

From my recent experience of feeling intimidated and bullied at the MN Autism Task Force to that passive aggressive methods in our state – I have been thinking out-loud. Why the resistance to policy change, sharing resources or being equal or leveling the playing autism field?

From the minute and half, I have been an autism advocate I have noticed that no matter which agency, local, state or federal the one sentence they all say unanimously is “we know we are not doing a good job in outreaching to autism families of color”. 
Logically when you hear this, you think to yourself – that is awesome because half of the battle is recognizing the need. And, since “they” are aware of it then positive change will come soon.
Then I realized quickly that is where it starts and where it ends (we know we are not doing a good job reaching out to autism families of color). Then a reasonable person thinks – OK, well if they are aware and nothing is changing, maybe I will recommend things and they will then make a change.
Not so fast because now when sharing resources, changing policies, hiring people of color in middle and higher management is in play. Then, there is a level of resistance that would make your head spin in awe and shame just by watching most of “them” come up with a reason to not be equal and level the opportunity field. 
If you are reading this blog then you have probably seen other autism blogs where words and statements can be harsh, painfully correct based on the blogger’s point of view, offensive to some, welcoming to others, etc and etc. The difference is many of these bloggers are usually non minority or a person of color and are seen as frustrated parents, advocates and researchers. 
By the same token, if a person of color – god forbid uses the same words, same analogy, same frustration then it is offensive, not cool, not true, not allowable, angry Black person, you name it. In my thinking out-loud and trying to figure out why there is so much hard core resistance, I chatted with many people and one African American person said to me there are two kinds of racism. One kind creates racist and bias policies that are hard to see it with the naked eye. It can be we can only fund big agencies when they know there are no big minority agencies. It can be we just could not find a qualified person of color, yet they train and nurture the non-minority person, We don’t know where to look and we tried. My fav was they will make you so tired of asking and wear you down with no this, negative that and can’t the other. The other kind is those that sort of just stand-by bias and prejudice policies even though they know & understand it. Sometimes, that bystander is worse. 
In thinking out-loud – I have come to this conclusion:
Most state agencies in Minnesota have horrible inclusion policies, don’t share funding and resources equally and even if commissioners and asst commissioners really want to make a change – middle management don’t and they are the ones who can make a difference. 
Most politicians especially those that win because of minority votes only care for our communities during elections. Think about that – they are policy makers and if they really cared, they would have introduced legislations to reflect that and decrease disparity. But, they don’t and only preach we care when minority votes are needed. These politicians are so smooth and savvy to the point of selling us water even though we are drowning. We buy their campaign words like it was holy water and they turn our backs on us faster we can call their offices. Think about that.
Then there are those politicians that have no idea how to outreach to minorities and could not sell us a life jacket even if we were drowning. There was a recent interesting article in NYT stating in couple of decades or so – Americans of color will become the majority in America. So, who knows maybe then these politicians will see our votes value. 
Minnesota is not a poor state, rather one of the wealthiest states and the fact that it is at the bottom of every pit for almost every category for people of color including autism – is not because no one knows what to do. It is because no one of power wants to make change. They are the politicians, the state agency leaders and their middle management, the overwhelmingly non minority media, the average person who clearly can’t empathize and so much more. Sometimes, they are the bystanders who can see, can help but do nothing and watch inequalities and despair. 
As the saying goes – look up and have faith, we must have faith and look up. The one good thing is if we use our ability and our voting power – we can demand change and demand equality.
For example, using our votes in all elections by not just campaigning for politicians, but using our voices as a bargaining chip. If we vote for you then we want 1,2 and 3. If you don’t deliver – don’t come back asking the same votes. I really think if we ask cohesive and clear tangible goals, we won’t be at the bottom of gap and disparities. 
So, let’s keep thinking out-loud because too many important minorities especially African Americans fought for our equal rights and we must fight it so that equal policies are in place so that our children don’t have to lose a leg to gain an inch of a finger. MLK once said Injustice anywhere is a threat to justice everywhere. Allowing disparity anywhere is allowing inequality everywhere. 
God Bless!
Idil – Somali Autism Mom

Category: Uncategorized

Comments Off on Code of Ethics or Code of Non-Relevant Dictatorship?

Minnesota Autism Task Force  (Written by Mr. Chair rules for the rest of us) it mostly has nothing to do with autism, only how to bully and intimidate anyone whose ideas he does not understand, agree with or care for. Being bias is never good, Being ignorant is never good – Being both is a horrible combination.

You Read and Decide for Yourself. Here they are in Black and My Response in Blue.

All members of the Minnesota Autism Task Force agree to abide by certain minimum ethical standards of conduct. Adherence to these standards is not only required for membership in the Council, but serves to assure public confidence in the integrity and services of members of the Minnesota Autism Task Force. These standards include the following obligations.

I – Idil Abdull a member of this task force feel and can now see that the chair seems to think he can make up rules for us and specifically for those he does not like or agree with. I think that is wrong and is not in our charge and therefore this (code of ethics is not valid and does not even pertain to our charge of autism).

Members should at all times make a sound effort to attend a majority of the Minnesota Autism Task Force meetings; (While this is a good idea – it was not part of the legislative charge we have to follow).

2. Members should make reasonable efforts to promote public understanding of the Minnesota Autism Task Force process and the proper role of advocacy within that process; (I am sorry – but this is NOT part of our legislatively directed part of the charge).

My Answer: Everyone involved on the Minnesota Autism Task Force should be treated with full respect and dignity in any form of written and or oral communication; (What one considers full respect – another considers disrespect and so who exactly decides this? This can only lead to some agreeing, while others disagree as all is in the eyes of the beholder.

Everyone involved on the Minnesota Autism Task Force should treat others not assigned to the Minnesota Autism Task Force, i.e. Legislator’s, Staff Member’s, Advocacy Groups, etc., but not limited to, with full respect and dignity in any form of written and or oral communication;

My Answer: The last time I checked any legislator who is public elected official was just that a PUBLIC ELECTED OFFICIAL. The autism task force chair has zero authority or say of what I or anyone else thinks of a public elected official. The thought of even thinking he can dictate this process of what makes this country great is both scary and disturbing.  I will say what I think of any public elected official – as a matter of fact, I think I will protest against and campaign against with anyone whose policies do not reflect our community’s needs,

Members are expected to avoid known or anticipated conflicts of interest and to resolve any conflict that does arise as expeditiously as possible;

My Answer: Are you kidding me – avoid conflict of interest – what does that even mean. I think because of this chair’s childish behavior and dictatorship rules is why our state is probably the first state ever to disagree on a letter of support. HRSA probably thinks if we can’t even agree on a simple letter of support – how can we possibly agree on a whole statewide autism plan. I think you should step down as you have totally divided th
is task force and the autism community. A good and reasonable chair would have united us, listened to all of us, did things open and transparently, oh and maybe don’t suppress the only African American member’s voice and ideas which all other state agencies heads agreed with on the support letter for HRSA.

Members are expected to understand and respect that if any voting issue arises and if a quorum is present, that a majority vote will be the end result of that voting issue;

My Answer: This is both silly and again out of touch for a chair that seems bent of power hungry and intimidation. All of our voices and ideas are to be validated as we all represent different views and communities. The notion of suppressing the minority by the majority is why we have civil and equal rights laws.

Members should not knowingly make any false or misleading statements to state employees or other advocates, employees of the legislature or administrative staff, or anyone else involved in the governmental process;

My Answer – Oh, now this chair of an autism task force also speaks for public employees, do you want to add unions, teachers, oh I don’t know postal office workers. An autism chair again has zero right or authority to tell anyone here or anywhere what and how they can talk to their own public government, I think you might just have energized to me protest in front of the MDH this week and maybe bring 20 other Somali autism parents who they have neglected. Would you like to write some rules for them too Mr. Chair? I bet you would like that. Let me remind you – this is an AUTISM task force and not I make up rules task force for those I disagree with or don’t understand their needs.

Members should make reasonable efforts to become and stay as informed as possible on the issues and process involved in being an advocate of the Minnesota Autism Task Force.

My Answer: More dictatorship and more dictatorship. I really left Somalia to get away from politicians who were power hungry. Who would have ever thought, I would see them as autism chair, not in a million years. In terms of staying informed, I would advice you to understand even what HRSA does, means, how this grant came about, what minority disparity is – I can name a lot more, but you get the hint.

To the rest of the reasonable task force members – I ask that you follow open meeting laws, which Minn has. This means when Mr. Chair said everyone voted against minority partnership statements I was asking to be added, yet he would not say who – He violated that law. So, you are all entitled to your own opinions and ideas – but please say and email them publicly so that we can all have an adult conversation, debate and come to a united voice that will help all families with autism.

God Bless!
Idil – Somali Autism Mom

Category: Uncategorized

Comments Off on What does The Brady Bunch TV show have to do with Autism?

Remember the Brady Bunch TV show – and how it was all about Marsha Marsha Marsha. 

It seems we have similar idea for all autism grants and resources. It is all about ICI ICI ICI.
What is ICI – Institute of Community Integration. Don’t let the name fool you. There is nothing community like about them, there is zero sincerity in integrating – but it is an institute. A big, greedy all about them for all autism funding and resources institute. 
Let me explain a little bit more. Back in 2008, we notice autism is 25% Somalis in Mpls school autism classes even though Somalis only made up 6% of the total district population. As a result, I called Minn dept of health to see what the heck and what they could about it. I get referred to child and maternal health dept. This department is totally sleeping at the wheel in autism and did not care or wanted to care. So, I go back to the commissioner and Gov Pawlenty. To make a long story short, Minn dept of health commissioner agrees to do an administrative study which basically meant getting school records and comparing where kids were from ethnically. And, Walla – they say – yep, yes siree bob – autism is up to seven times higher in Somalis, but this is only school records and not medical records. Keep in mind many of the ADDM records are mostly school records. But, MDH and CDC are in denial – blah blah blah. 
But they say we will look further into. OK, so far so good. Months pass and nothing. We get maybe every elected officials ask and natta – zippity and zap and zero action from MDH. They pretend to not hear us and we already knew they did not care. In fact, during one of our meaningless meetings with MCH – they said to us “what is the point?”. The point is our kids have autism, our dreams have been altered and our lives changed forever. The point is MCH at MDH is responsible for all health for all Minnesotans. The point is – really what a stupid and insensitive question. 
So, we go higher to the Federal government and ask for assistance. To make another story short, we managed to get $400,000 from federal. I am almost to the point of marsha – ICI analogy. 
That is right ICI hears about the grant and applies. They get it and guess what they do in a Somali autism study, advocated by Somali autism parents to outreach to Somali autism families in the Somali community – you guessed it, they hire non-Somalis to do the data counting, be the researchers, be the research coordinator, etc. I know if this did not make me pull my hair – I don’t know what will.
To make another story short – we advocate again and defy this stupid and bias, prejudice and racist tactic and they finally hire one Somali abstractor a year later. As the saying goes a year too late and a year too short. It now has been two years in this study and Somali community is still confused, has no idea what kind of research this is, many parents are not participating because they sent letters to an oral community. Not kidding – really. But to them as long as they translate that is good enough.
Never mind, these parents can’t read or write Somali or English – hence we are an oral society, but of course it is always about Marsha Marsha Marsha – oh I meant ICI ICI ICI.
After almost two years of wasted hundreds of thousands of Federal dollars and time – they come to the Jan IACC meeting to give some preliminary data – oh wait they didn’t have it. 
Now, because they have done such a horrible job in Somali autism study and even the recent DHS autism study which they basically were note takers of public comments that already HSAC collected and both DHS and CMS read – they have decided it is time to go back for more fish – I meant hogging another grant. 
Because after all it is about ICI ICI ICI – never-mind they suck at outreaching to Somali community that lives in their backyard of West Bank Mpls. Now, they want to outreach to ALL minorities in Minn and get this to ALL rural autism families. Really, I now want to drink vodka or something. Wait for it…..It gets better, remember the bias and prejudice MCH at MDH that can deliver disparity and health discrimination on a silver platter with a hint of smile like no other wants to partner with them in this new grant from HRSA to outreach to us, (minorities and rural autism communities)
They must think we are stupid in minority autismville or rural autismville. I mean how does this work. They will do a horrible job, waste yet another Federal grant and provide no real reform that will trigger a positive policy. 
Here is my question for the Federal agency that is responsible this grant goes to all Minnesotans including under-served in ethnicity and location to assure services and resources will be done in a manner that is culturally appropriate. Saying culturally appropriate does not mean doing, sharing the resources and partnering. I think they get confused and think if they say it and write somewhere then that is all we need and is good enough.
Insanity is funding the same village idiot mainstream agencies and expecting different results. Therefore, It is HRSA’s responsibility and obligation to make sure equality and sharing resources is established from the gate. Furthermore, CAA made this grant possible and we worked really hard for that legislation in Congress and HRSA has promised me time and time again of how they now have better and more inclusive policies to assure that we not only decrease autism disparity but eliminate it nationwide. 
Well, this is their chance not just in Minnesota, but nationwide. No more funding mainstream suburban agencies to outreach to urban minority and rural autism communities and families. Enough is enough and they have hogged the resources and have produced zero positive results. it is time to look and do things differently. It is time for HRSA to stand up, speak up and wake up for minority and rural autism families who have gotten the short end of HRSA’s previous resources. 
No more marsha marsha marsha arrogant agencies who only contribute to autism disparity and discrimination in services and resources. Our children are diagnosed years later, have almost non-existent access to early intervention, have limited access to waivers and other support. We are tired of this double standard and want equality, equality and equality. 
Idil – Somali Autism Mom (determined to fight autism disparity from every mountain, river and valley)

Category: Uncategorized

Comments Off on Defending the President and the Speaker in Autism

I would like to defend President Obama and Speaker Boehner in Autism today. Yes, that is right – I said it – I think they have done and continue to do what they can for Autism.

A little basic history about both men – they are both politicians, both have daughters, both at the top of their political game in this country. And, Yes both have supported autism.
Here is what I mean, first we need to understand politicians can not and don’t do autism research nor can they force it. Their job is to solely listen to their voters and pass laws or policies that address autism research, services and resources. Then of course there are three branches of government who often don’t get along and veto the other guy’s items just because. This makes very difficult for bi-partisan bills to pass in Congress and the President to sign it. 
A lot autism parents are usually mad at the Federal government’s response to autism and sometimes rightfully so. For these two – let’s see what they have done so far.
President Obama’s administration has nominated the most minority advisers in Federal InterAgency Autism coordinating Committee. The President has also nominated an autistic person and a father with an autistic child to his disability council – the first time ever such nomination happened. 
He also recently added $100 Million for Brain Initiative to his upcoming budget which will study the brain mysteries including Autism. 
In parallel Speaker Boehner has supported autism research, has pushed the passing of the Reauthorization Combat Autism Act and has voted to increase autism research funding. Speaker Boehner has worked closely with Congress Autism Caucus especially Rep Smith (R-NJ) who is a co-founder of the caucus and a coauthor of the Autism Act.
Now, they can fund the authorizations so that they become funded mandates rather than unfunded mandates. But – everything is always harder in DC.  What I also like about both of them is that they don’t act as scientist and researchers and rely on NIH, NIMH and CDC directors for guidance on that regardless of which party nominated them. That is true objective and non-bias attitude.
Now, there was an autism hearing in Congress end of last year pushed by mostly parents who believe vaccines caused their children’s autism. Rep Posey (R) from Florida and Rep Maloney (D) from New York introduced HR1757. This bill asks research of vaccinated vs non-vaccinated children. 
In addition, I have been asking and pushing Rep Cummings (D) from Maryland and Rep Davis (D) from ILL to introduce a bill that changes CMS guidelines for autism therapy coverage for low income and poor autism families so that we don’t have to fight state by state. So far, their favorite sentence is we are broke. 
Doing nothing and not addressing autism will cost a lot more is my humble little opinion. I really think we need to change in Congress the CMS rules for EPDST so that autism therapy of behavior and developmental is part of the rules rather than the exception. 
I also asked (OK, harassed) Congressional of Black Caucus to help with this since they are always telling us they want health disparity to diminish. That fact of the matter is there are over 35 states with autism private insurance coverage and less than a dozen with public autism coverage. 
That kind of different rules for children is what creates and maintains health disparity and health inequity. 
Idil – Somali Autism Mom
June 2nd, 2013

Category: Uncategorized