Monthly Archives: April 2014

What Can Minnesota Learn From NBA Commissioner Adam Silver To Tackle Its Horrible Racial Disparity Record?

| April 30th, 2014
Comments Off on What Can Minnesota Learn From NBA Commissioner Adam Silver To Tackle Its Horrible Racial Disparity Record?

So, what can our state of Minnesota which has some of the worst racial disparities in the country learn from my new hero NBA Commissioner Mr. Silver? I think a lot.

I know – you are saying, now what now? Let me explain my reasoning and first give credit to my good friend and fellow IACC member Dr. Batra who always asks “how does this relate to my little world in my little practice in Los Angeles”. As a result, I try to find a way we can learn from every situation. First, what the owner of LA Clippers said was offensive and unfortunate. However, how it was dealt with by the commissioner of NBA was impressive and swift.

Imagine for a minute when a new research comes out in Minnesota that says how horrible our racial disparities are – if our governor or state agency leaders actual took similar swift and impressive measures to address it. In case you are thinking how racist comments relate to racial gap and disparity – they absolutely do. Racial disparity and racial gap come from not words, but offensive, bias and prejudice policies. In other words, racial health, education or economic disparity do not happen on its own, they are created, enhanced and maintained by policy makers and their policies.

So, what did Mr. Silver say and do and how will that apply to autism’s racial disparity in Minnesota and nationally. First, he banned the person involved. 2nd, he is forcing a sale of the Clippers and suggested the need for more diverse owners and leadership. 3rd, he said the following – “As you know, we have an African-American primary owner in the league right now,” Silver said. “Shaquille O’Neal just became a small owner of the Sacramento Kings. David Robinson is an owner of the San Antonio Spurs. Vivek Ranadive, a person of color born in Mumbai, India, just became the primary owner of the Sacramento Kings. So I believe we have a very diverse league, but I’d always like to see it become more diverse”.


In fact, Oprah as a potential buyer stated “it would be a great thing for a Black person to own another franchise”.

In other words, imagine if the top person in the state which is the governor said we will assure more minorities will be commissioners, own more business, hired as policy advisers, funding and resources will be shared equally, etc and etc. To me that would be a leader who takes the issues by the bull and addresses them. Instead Dayton, Bakk and Thissen keep the status quo regardless of multiple studies stating Minnesota’s racial disparity records from health to education to everything.

In sum, our leaders in Minnesota can learn from Mr. Silver and take action. Fire those in charge of agencies with horrible racial disparity and have not made any significant improvements, such as the health department, hire more minorities in leadership and policy advisers positions and assure appropriations and resources are equal from the gate.

I suppose we can all dream or we can replace them all with our votes. By the way, hurtful words are not as hurtful as our existing hurtful bias policies.

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

Thanks!

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

« Older Entries

What Can Minnesota Learn From NBA Commissioner Adam Silver To Tackle Its Horrible Racial Disparity Record?

idilabdull | April 30th, 2014
Comments Off on What Can Minnesota Learn From NBA Commissioner Adam Silver To Tackle Its Horrible Racial Disparity Record?

So, what can our state of Minnesota which has some of the worst racial disparities in the country learn from my new hero NBA Commissioner Mr. Silver? I think a lot. I know – you are saying, now what now? Let me explain my reasoning and first give credit to my good friend and fellow IACC member Dr. Batra who always asks “how does this relate to my little world in my little practice in Los Angeles”. As a result, I try to find a way we can learn from every situation and relate it to my little world of minority autism advocacy. First, what the owner of LA Clippers said was offensive and unfortunate. However, how it was dealt with by the commissioner of NBA was impressive and swift.

Imagine for a minute when a new research comes out in Minnesota that says how horrible our racial disparities are – if governor Dayton or state agency leaders actual took similar swift and impressive measures to address it. In case you are thinking how racist comments relate to racial gap and disparity – they absolutely do. Racial disparity and racial gap come from not words, but offensive, bias and prejudice policies. In other words, racial health, education or economic disparity do not happen on their own, they are created, enhanced and maintained by policy makers and their policies.

So, what did Mr. Silver say and do and how will that apply to autism’s racial disparity in Minnesota and nationally. First, he banned the person involved. 2nd, he is forcing a sale of the Clippers and suggested the need for more diverse owners and leadership. 3rd, he said the following – “As you know, we have an African-American primary owner in the league right now,” Silver said. “Shaquille O’Neal just became a small owner of the Sacramento Kings. David Robinson is an owner of the San Antonio Spurs. Vivek Ranadive, a person of color born in Mumbai, India, just became the primary owner of the Sacramento Kings. So I believe we have a very diverse league, but I’d always like to see it become more diverse”.

In fact, Oprah as a potential buyer stated “it would be a great thing for a Black person to own another franchise”.

In other words, imagine if the top person in the state which is the governor said we will assure more minorities will be commissioners, own more business, hired as policy advisers, funding and resources will be shared equally, etc and etc. To me that would be a leader who takes the issues by the bull and addresses them. Instead Dayton, Bakk and Thissen keep the status quo regardless of multiple studies stating Minnesota’s racial disparity records from health to education to everything.

In sum, our leaders in Minnesota can learn from Mr. Silver and take action. Fire those in charge of agencies with horrible racial disparity and have not made any significant improvements, such as the health department, hire more minorities in leadership and policy advisers positions and assure appropriations and resources are equal from the gate.

I suppose we can all dream or we can replace them all with our votes. By the way, hurtful words are not as hurtful as our existing hurtful bias policies.

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

Thanks!

Idil – Somali Autism Mom & Minority Advocate

 

Category: Uncategorized

« Older Entries

The Red T-Shirt Wearing Autism Gang Are At It Again – Take From The Poor & Give To The Wealthy, How Nice

idilabdull | April 29th, 2014
Comments Off on The Red T-Shirt Wearing Autism Gang Are At It Again – Take From The Poor & Give To The Wealthy, How Nice

Alright, so if you follow this blog or live in Minnesota and have a connection to autism, then you heard me talk about them or read here about this gang of so called autism parents that seem to wear Red T-shirts to bully and intimidate policy makers and try to intimidate low income and minority autism families. They take no prisoners and will take candy from a toddler without blinking.

Unfortunately, they seem to lie and harass at whatever cost by twisting existing research and the truth about autism therapy in Minnesota. They also overwhelmingly get their kids covered for ABA therapy through the state Medicaid agency while the low income managed care kids get denied for the same services by the state Medicaid agency.

They are mostly middle/upper income and some very wealthy who own the very same autism centers and clinics that often don’t take minority autism kids even though the funding is public. Yet, they are under the impression Medicaid funding is for them. I kid you not. They also seem to have the Minnesota Disability Law Center which is connected to Minnesota Legal Aid which is suppose to help —– guess who…. the low income, yet somehow only seems to fight to give more butter to the buttered up. Again, I kid you not. Our state Legal aid office for disability issues is bent on hell helping middle/upper income autism families while the low income who are mostly minorities are told to take a flying leap by them.


How is it MDLC through legal aid keeps getting Federal and State funding to help the poor if they are only interested in helping wealthy autism families? I hope someone looks into that, more on that on later posts.

At any rate, the red t-shirt wearing gang found another sucker legislature this session – Sen Clausen to write yet another bill to override the fair and just bill that passed last year by state legislatures & signed into law by Gov Dayton which said autism therapy will be paid for children on Medicaid up to age 18 and will have an independent assessment and evaluation among other good things. Because nothing is ever good enough and they are never satisfied – they came back for more. They want to take again from the poor, homeless, minorities – all for them who ironically can afford a lof of these therapies. They want to decrease their parent pay to …..wait for it and drum roll pleassss up to 975% of the Federal poverty guidelines. I think that will probably qualify the Koch brothers and maybe even Bill and Melinda Gates. I am always surprised how we are told to believe the poor and minorities hog the services. Well, let me tell ya – not in autism and not in Minnesota. The very well off and well to do hog ABA autism therapy by using Medicaid funds to the tune of $100,000 per child per year while the poor and low income are put on managed care Ucare, Medica and Health Partners who then DENY the same autism ABA therapy. I kid you not. Double Standard – you betcha.

Never mind the 1915i waiver which is what our state was authorized to provide autism ABA therapy last session only goes up to 300% of the Federal poverty guideline. These greedy, red t-shirt wearing gangs want to bully us and take more and probably risk the Federal government denying our autism therapy waiver being approved by CMS. Imagine their level of arrogance and ignorance in a greedy and stupid kind of way.

I personally contacted Sen Clausen and wanted to ask why he would write such stupid and discriminative bill for the haves while the have-nots will get screwed. I also wanted to ask isn’t he a Democrat because they are the ones that tell us (fare share – pay equally and fairly blah blah). Well, not surprisingly once he found out my views were against his bias policy – he played the usual MN DFL game which is ignore and pretend the poor do not exist. Unless of course during elections when they come to our communities and feed us bunch of useless words like the rich should pay their fair share.

Sen Clausen, let me clear some facts for you and please take off your diluted glasses – you are taking away from the poor autism families and giving it to the wealthy autism families who can afford the therapy. To me you are a hypocrite and preach sugar words – yet practice salty policies. In other words, if you write bills like a duck, meet with ducks, talk like a duck – then you are a duck. Sen Clausen can not preach “fair” share then write bills like SF 2837 (take a read in this bill and see for yourself). I tell ya – these greedy folks never seem to amaze me. They are soooo predictable, take from the poor and give it to the rich. How nice and how will Sen Clausen sell this in his next election. How will Sen Bakk and Company sell this to the thousands of poor autism families they seem to throw under the bus every session. Let’s explain in laymen’s terms how the parental fee works if you have a child with a disability including autism who is on MA (Medicaid) and gets ABA therapy which as you can see costs millions of dollars. For instance, if your AGI is six figures of $100,000 per year then your parental monthly fee would be 423.34. Keep in mind the average salary for Minnesota is $51,000 and the fee would be almost non-existent. Don’t believe me – here is where you can plug your income and dependents to get your parental fee. Click here:


What does this all mean? In a nutshell, the h
aves want to take more from the have-nots and want the state to lower their parental fee – even though they can afford it. Instead they want the homeless to get less, the DD waivers to have even longer wait list, nonprofits to suffer more, the youth programs in Cedar to get even less resources. All for what – to give more Barri to Niman Barri leh. That is right as the saying goes (nin barri leh ayaa barri kale loogu daraa). The saddest of all is the legislators that are helping with this are the ones that preach fair share and get almost all of the minority and poor votes in Minnesota. Insanity is for voting for the same policy makers and expecting different policies. Racial disparity exist in Minnesota because of exactly policies like this HF3172 which is the appropriations bill and is authored by non other than Sen Cohen – Confederation Somali Community of MN board member and Rep Carlson. Ironically, CSCM is at the brink of being broke while Sen Cohen wants to give more to the wealthy, but tell CSCM to drop dead. Think about that for a minute and kick him out of our community board. He is useless.


Finally, unless something has changed in the Federal system in the last few months, ABA autism therapy is NOT part of EPSDT because when Congress wrote children’s Medicaid services, autism nor ABA were as prevalent. Therefore, states do not have the authority to change or amend EPSDT by adding ABA therapy. They can only add it through their 1915c or 1915i waivers which also require Feds approval since portion of the funding comes from them. Nevertheless, in hillbilly land Minnesota red t-shirt wearing world – such policies are meaningless and they keep asking clueless legislators to add ABA to EPSDT. They can’t – it must be done in Congress. Imagine if they used their energy to advocate in Congress and asked changes to CMS rules for providing autism therapies instead of bullying and intimidating the poor, low income and minority autism Minnesota families.


You see – according to Sec Sebelius and she would know when IACC asked if ABA can be part of both public and private insurance market – she sent us this letter. If you read carefully, it does not mention states taking upon themselves to change the Federal EPSDT rules because that would be absurd and undoable. EPSDT funding is from Federal/State which means the changes MUST come from the feds and Congress. In addition, to add more silly salt here – these red t-shirt wearing gang probably thought EPSDT stood for a bus stop in North Mpls few weeks ago and had no idea even what IACC stood for, let alone any other Federal autism policies. Oh and this is the current autism policies in the country in case you really wanted to learn.

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

Thanks!

Idil – Somali Autism Mom & Minority Advocate from every valley, mountain and river.

Category: Uncategorized

« Older Entries

Open Letter To MN DHS Assistant Mental Health Commissioner – Mr. Hartford

idilabdull | April 27th, 2014
Comments Off on Open Letter To MN DHS Assistant Mental Health Commissioner – Mr. Hartford

Minnesota Department of Human Services (DHS) has had many troubles in their mental health department. When Gov Dayton won with less than 9000 votes in 2010 and named Commissioner Jesson to head the biggest state agency brought many of her friends and staff was bitter sweet for me for many reasons. While in Autism services – things got much better, mental health not so much. Keep in mind autism falls under both mental health and disability.

One reason was I really liked Dr. Sulik the previous assistant commissioner of mental health at DHS. Dr. Sulik was very kind, approachable and spoke with us about autism which falls under mental health several times. In fact, Dr. Sulik and I had a phone conference with Dr. Insel who is the Director of National Institute of Mental Health. Dr. Sulik even spoke with two potential autism and services researchers from Columbia university and Univ of Ill – Chicago. So, my gratitude for Dr. Sulik is endless.
Then Jesson replaced Dr. Sulik with Maureen O’Connell to head mental health department at DHS. Now, many folks did not think O’Connell was qualified for this position, and she had her share of contraversial issues as reported many times. Personally, I liked O’Connell because while she did not really understand mental health policy or was a mental health doctor – she did not have one bias bone in her body. After O’Connell resigned, the current one was hired – Mr. Dave Hartford. 
Mr. Hartford does not understand much about autism or seem to care. He also does not understand much about equality or seem to care. In other words, under his leadership there are still persistent and chronic mental health racial disparities as reported by MSR recently. Personally, it would be nice for the mental health department at DHS to be headed by an actual mental health professional.
Furthermore, a recent mental health legislation written by Sen Eaton who in my humble little opinion is an evil legislature that likes creating autism and mental health disparities authored SF1864 which wants to educate and train mental health workers and prevent mental health illnesses. This particular bill does NOT have any specific language of assuring equality and access for communities of color and mental health patients from minority and ethnic communities. Furthermore, it will enhance the current dire racial disparity that already exist in Minnesota mental health programs. SF1864 does not have one single word of diversity, equity and fairness in it.
As a result, I asked Mr. Hartford and his policy supervisor Brost to make language changes to this bill which requires DHS approval before it passes committees since DHS has a heavy hand on all bills regarding their jurisdiction. Their initial response was the usual (we care, we understand, blah blah & oh look we have a powerless council for reducing disparity) words then that changed to when I asked again for specific answer – let’s ignore and dismiss any equal access to training providers of color and law enforcement about mental health and diversity. Then they said Oh that will cost more money to train providers of color or law enforcement about diversity and mental health. Now what now? Um – doesn’t racial mental health disparity cost more? Wait a minute – yes it does. However, this fact and known knowledge per research seems to escape Mr. Hartford and Brost.  
So, SF1864 cruises through committees with no one adding or amending current bias language to assure equality and access for mental health patients of color. In addition, Mr. Harford refuses to hire ONE single person of color for his policy advisers team. That is right the people that advise him and legislators about mental health policies are ALL White – not one of them reflects us, even though DHS is the state Medicaid agency. So, how can they possibly understand a mental health Black male patient will be shot dead or arrested by the Police and not taken for treatment as it happened to a Somali patient few years ago. 
They don’t, they can’t and they never have. It is simply impossible for a White woman or man to fully comprehend what it is like to be a Black or Latino person in Minnesota. Yet – Mr. Harford seems to apply the Sandra Fluke theory here and pretend to speak for us, about us – without us. To me that is sad in 2014 in a progressive and moving forward state like Minnesota’s Medicaid agency does not have one single Black policy adviser in their mental health or anywhere else for that matter. That kind of subtle and deliberate decisions are exactly why racial health disparity exist and will continue to only get worse. 
In case you still doubt mental health and racism does not exist in Minnesota – read here and here.
In case you still doubt mental health and racism does not exist in this country – read here and get out of living under a rock. Unless we stop and nip bills like SF1864, inequality will only get worse.
You see Mr. Hartford – ignoring our plea for equality in mental health care, access, training and services does not make disparity go away. It is your responsibility to assure all Minnesotans are treated fairly and get access to the same mental health treatment by assuring new legislations have proper language. And, you are failing at this miserably. You can’t create disparity then refer us to a powerless internal council after, you must nip and prevent racial mental health disparity from the beginning through fair and equal language in all mental health new legislations. In other words, it is better to prevent spilling milk rather than cleaning after you willingly spill it. Not only is it cost effective to prevent mental health racial disparity, but more importantly the human toll is irreplaceable. It turns out Mr. Hartford is out as well. My take good bye and good riddance. I would advice Commissioner Jesson to hire an actual mental health person for this position. I heard it might not Happen until the 2014 election. 
Above words do not reflect any agency, committee or candidate.
Thanks!
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

« Older Entries

MN State Legislatures Give Themselves A New Expensive Office Building & Say To Expanding MN Human/Civil Rights – Drop Dead

idilabdull | April 26th, 2014
Comments Off on MN State Legislatures Give Themselves A New Expensive Office Building & Say To Expanding MN Human/Civil Rights – Drop Dead

Alright, so if you live in Minnesota and follow local politics then you heard Minnesota state legislatures under the rug and with no public input gave themselves a brand new and expensive with state of the arts everything building. See that here:

Then with the same arrogance yet ignorance say to expanding human rights – no way, no how and not under our leadership. That is the leadership of Speaker Thissen (whose future includes running for governor of MN one day where he will ask and need Minority votes) and Senate Majority leader Bakk, plus current governor Dayton. They unanimously say to equal rights, equal opportunities and equal health care access and equal education for Minnesota minority families – drop dead. I know you are thinking – come on, this can’t be. Well – yes it can be, it is and is a reality in MN which is why we have one of the WORST health, opportunity, education & employment disparities for minorities in the whole country. 
Council of Black Minnesotans whose responsibility is advising and improving Black Minnesotans through legislative recommendations asked MN state legislature leadership and Gov Dayton to pass MN Human Rights bill SF2730/HF2173. So, what do Gov Dayton, Sen Bakk and Speaker Thissen say to protecting human & civil rights in Minnesota for All Minorities – Drop Dead and no way. The Council also recommended twelve other legislations that would’ve uplifted Black Minnesotans – guess how many passed through committees -…..wait for it……ZERO. That is right, while all of the bias bills such as SF1864 which will create more mental health discrimination and HF2282/2892 which wants to eliminate a free autism committee that has helped Somali autism families pass with no hurdles – no fair and equal bills pass in MN DFL controlled legislature. Imagine that as you circle the voting ballot this year. How long can we be stupid and vote for the same people that could care less? ask yourself?
Ironically and probably on purpose SF2730 is authored by Sen Eaton, DFLer from Brooklyn Center and is the same legislature who is bent on hell on eliminating the cost free State Autism Task Force and supports more resources & funding for wealthy autism families while she tells the poor “nothing for you”. You see state of Minnesota is controlled by one political party in all three branches of government which means what MN DFLers want they get and what they don’t want does not pass. Therefore, they clearly want a new office building with a price tag of dozens of millions of dollars. They want to eliminate a FREE Autism task committee and they don’t want to protect our civil rights and THEY WANT to keep Minnesota’s horrible racial disparity records. 
It is worth noting that Rep Kahn from the largest Somali district in Minnesota authored HF2029 and changed from its stupid name of Black Art – what the heck is that. They don’t call White art, so why label us. Instead – Kahn changed it to Diverse Racial and Ethnic Minnesota artist which is much better label. From what I understand from COBM – this bill along with others has not moved or been added to any Omnibus bill. If Kahn really wanted to, she can add to a bigger Omnibus bill and even talk to her friend Cohen in the Senate Finance to add. We will see what they do because talk is cheap – we need legislations to pass. 
I hope this all makes sense to anyone who votes or lives in Minnesota because voting for Dayton and Thissen as well as Rep Norton, Kahn, etc in 2014 is voting to keep racial disparity high for autism and everything else. Sen Bakk and Sen Eaton are not up for re-election, but don’t worry 2016 is just around the corner. Think about this – we all know racial disparity is the result of bias and subtle discriminative policies. In other words, disparity is not an accident – it is carefully designed, crafted, delivered and maintained through bias policies that ever so subtle don’t provide equal access to autism therapy, to other health care, to education, to hiring fairly, to writing equal bills, etc. All the while, we are told “we care, we understand, we know, we hear, blah and blah” – quite frankly if I hear these useless words from one more Caucasian MN state legislature or state agency lead – I am going to scream. 
These are clearly words to contain and if they don’t then eliminate or elimination is recommended. At any rate, Council of Black Minnesotans wrote an Op-ed piece on this and below is their post as they wrote it. 
Moving from Tolerance to Allophilia By Council of Black Minnesotans
Expand Human Rights Enforcement in Minnesota 
50 years ago, on July 2, 1964, President Lyndon B. Johnson displayed courage and 
innovation by taking the unprecedented national step to attack the heart of America’s 
close friendship with discrimination based on race, color, religion, sex and national 
origin by enacting the Civil Rights Act of 1964. Minnesotans such as Roy Wilkins, Vice 
President Hubert Humphrey and Vice President Walter Mondale played a huge role 
with bringing about this historic day. 
In fact prior to the passage of the civil rights act, Minnesota passed the Minnesota 
State Act for Fair Employment Practices in 1955, which prohibits discrimination in 
employment based on race, color, creed, religion, or national origin and in 1961 passed 
laws to prohibit discrimination in mortgage lending and in the sale, rental, or lease of 
real property.
These acts banned discrimination and represented the beginning of the fulfillment of 
the hopes and dreams of many in the costly and painstaking journey to build a society 
with equal access and opportunity for all. It also provided an external control 
mechanism to move America from Absolute Prejudice To Tolerance. This newfound 
tolerance provided a plethora of social, political, and economic opportunities for all 
Americans regardless of how you were socially constructed (race, color, creed, religion, 
or national origin). 

However, today the cry for equity (fairness) goes unheard by policy makers and others. 
The plethora of disparities reports document the fact that something is amidst with the 
administrative application of state civil rights and equal opportunity laws; that 
constructs matters again in Minnesota. 
On the anniversary of the historic signing of the Civil Rights Act of 1964, Minnesota 
Legislative Leaders ignored carefully crafted legislation that would correct Minnesota’s 
dismal commitment to civil rights enforcement under the auspices of Minnesota human 
rights enforcement in recent years. Instead of taking corrective action to reverse 
growing disparities and address the marketplace cry for fairness, the legislature has 
chosen to: 
 
• Only provide an informational hearing on human rights enforcement in the 
House of Representatives, 
• Not grant a public hearing on human rights legislation, Continue a no-net increase in funding policy for our Department of Human 
Rights, 
• Ignor
e the 2011 Minnesota Committee of the US Commission on Civil Rights 
report that stated, “The lack of resources for civil rights enforcement in the state 
has worsened, leaving Minnesota in a “crisis mode,” 
• Continue to allow complaints to linger in the Department of Human Rights for 
three years or more unresolved.
• Continue to assign more equal access and opportunity mandates to the 
Department of Human Rights (Viking Stadium, DMC, Bonding, Same Sex 
Marriage, Minimum Wage, Ban the Box, etc.) with no new money or staff, 
• Continue to only allow the Commissioner of the Department Human Rights to 
give priority to three of the Department’s administrative functions. 
This benign neglect does not match the values, spirit or history of Minnesota’s 
human rights enforcement approach. This state’s history of a strong commitment to 
human rights dates back to her origins. Minnesota entered the union as a free state 
and was among the first to answer the call to fight in the civil war. This state was 
the home of Dred Scott, whose Supreme Court decision is credited for building the 
momentum for the 13th, 14th, and 15th amendments of the US constitution.
 
Minnesota established the first human rights office in the nation. The legacy of 
Governors LeVander and Anderson, Vice Presidents Hubert Humphrey and Walter 
Mondale, Civil Right Leader Roy Wilkins and other iconic Minnesotans are built on 
the establishment of strong civil rights enforcement in our state. 
The Minnesota legislature and governor need to display the courage and innovation 
of President Lyndon B. Johnson demonstrated 50 years ago by acting on House 
File 2173 Senate File 2730 when the session reconvenes. These bills will strengthen 
Minnesota’s human rights enforcement approach to respond to the marketplace cry 
for equity (fairness) and to lay the foundation for the eradication of the plethora of 
disparities driven by the poor administrative application of this state’s human/civil 
rights and equal opportunity laws. 

Let’s show the world that constructs don’t matters in Minnesota and return to the 
spirit and courage of those who labored so tirelessly to make equal access and 
opportunity a practice. Let’s pass House File 2173 and Senate File 2730 to move 
our state Beyond Tolerance to Allophilia (loving or liking of the other).
Above words do not reflect any committee, agency or candidate.
Thanks!
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

« Older Entries

Sec Sebelius Leaving US HHS – What Does It Mean for Autism and IACC

idilabdull | April 18th, 2014
Comments Off on Sec Sebelius Leaving US HHS – What Does It Mean for Autism and IACC

As we all heard by now and sadly – U.S Secretary of Health and Human Services Department has decided to resign and leave her position.

For those especially in Minnesota that do not know – Sec Sebelius was the person that nominated all of the public Federal Interagency Autism Coordinating Committee (IACC) including me. So, this is sad for me personally as I am very grateful to Sec Sebelius for many things, not just nominating me. This now means a different person would have to nominate the next round of members at IACC. Of course, there is always a plus and minus in leadership changes.

I think I met Sebelius twice, once at the Autism conference at the White House and then again at our first IACC meeting in 2012. She had a commanding presence, physically she was tiny but when she spoke the room got quiet and people listened. I can’t really describe it, but she had one of those IT factors for public office that you either have it or you don’t. She also did not look like the type that micro-managed things which is probably why ACA did not do so well initially. She wrote policies and expected people under her to follow them.

For example, when she visited us at IACC – we were allowed to ask questions and my question was about racial health disparity and if she had any specific goals or policies to reduce them. And, to my surprise she did not. She mentioned the Federal CLAS guidelines which as I found out later most Federal and state agencies don’t really follow it or care about it all that much. Because regardless of they if they follow or not it does not affect their federal funding as I found out with Minnesota department of health who has refused to follow any CLAS guidelines, yet HHS still funds them. For example their main phone line and website – not following CLAS policy, yet they still get majority of their funds from HHS with no one even blinking.

I also asked if she had any plans of increasing the diverse leadership at HHS and again she did not. Come to think of – not sure why I liked her so much. Well in fairness, she did talk about how the new healthcare law would eliminate discrimination on people with disabilities including autism because of the previous pre-existing condition.

She also mentioned how HHS’s new 1915i waivers can help states apply for Medicaid payment for early autism intervention therapies. OK – maybe there was a reason I liked her. But all kidding aside, she really cared about early education, early intervention and parent involvement which is why she did the introduction of the new Watch Me Thrive Video by the Agency on Children and Families.

Overall – I would give Sec Sebelius a B- because I think while no one is perfect – HHS can certainly write better guidelines and policies for state health and human services departments in order to not just decrease, but eradicate racial health disparity which has only gotten worse or stayed the same under Sec Sebelius.

Finally, I wish Sec Sebelius well and success in her next chapter – maybe run for U.S Senate in her home state as many have said. I don’t see that though.

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

Thanks!

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

« Older Entries

Autism Speaks Moves The Autism Racial Disparity Needle A Little Better

idilabdull | April 18th, 2014
Comments Off on Autism Speaks Moves The Autism Racial Disparity Needle A Little Better

Below is a post from my friend Matthew Carey and IACC member about how Autism Speaks is partnering with a university and the South Korean American Autism Community. I think it is great that AS is moving from we care, we understand, yada yada to actual tangible plan of engaging with a minority autism community in outreach. It is a fact based on research that children who receive early autism intensive intervention have better outcome later on in life.

I am really glad that AS is doing this and I really hope they rethink their policy outreach efforts. My friendly, gentle advice for Autism Speaks would be:

1. In your state by state autism therapy legislation efforts – examine each state’s minority population then partner with them to advocate for both public and private insurance coverage for autism therapy. This way, both low income kids who are disproportionately minorities and higher income kids who are mostly caucasian can have a fair and equal chance for early ABA therapy. In other words, level the treatment therapy field for all kids because now AS lobbyist go to each state with one intention of only passing private insurance autism coverage. I think helping the haves and leaving the have-nots is cruel.

2. In your family outreach efforts grants – have a certain percentage that is allocated and is given to minority owned and operated autism advocacy agencies with measurable outcome and goals. Now Autism Speaks mostly funds mainstream Caucasian autism agencies which create unequal outreach efforts.

3. Finally, In your website which you only have English and Spanish language for the first 100 day kit – translate that into more languages in following the CLAS guidelines which does not mean translate everything word for word. For example, I know I asked your previous person in charge of family engagement Peter Bell if AS could do a DVD or CD in Somali that is spoken and explain the 100 day kit. Of course, he looked at me as if I asked for a kidney or something and did not understand CLAS (culturally and linguistically appropriate services) at all.

As usual above words do not reflect any agency, committee or candidate.

Below is a copy and paste from Matthew’s post at Left Brain/Right Brain Blog as he wrote it with no editing. Personally, I think Mr. Carey is amazing at IACC.


There are many groups in America where the autistics are under-diagnosed and underserved including many racial and ethnic minorities. A recent partnership (press release below) has been formed to address the issues of providing resources to the Korean American communities in the U.S..

FOR IMMEDIATE RELEASE

THE KOREAN COMMUNITY SERVICES, AUTISM SPEAKS, THE UNIVERSITY OF PENNSYLVANIA AND THE GEORGE WASHINGTON UNIVERSITY PARTNER TO PROVIDE AUTISM RESOURCES TO KOREAN AMERICANS

Launch Autism Hotline for Concerned Families

FLUSHING, N.Y. (April 10, 2014) – The Korean Community Services of Metropolitan New York, Inc. (KCS), Autism Speaks, the world’s leading autism science and advocacy

organization, the Center for Mental Health Policy and Services Research at the Perelman School of Medicine at the University of Pennsylvania, and the George

Washington University, today announced the establishment of the KCS Kids’ Line. KCS Kids’ line is a hotline service that provides referrals, information, and support for families

in the Korean community who are concerned that their children may have an autism spectrum disorder (ASD).

KCS will hold a press conference today at 3:00 p.m. ET at the Korean Community Services of Metropolitan New York, 35-56 159th Street in Flushing, to introduce the new

KCS Kids’ Line program. In attendance will be New York State Assemblyman Ron Kim, the Community Advisory Board members of the Project and local early intervention

providers. A two-year study, the New York Korean City Community Autism Project, funded by Autism Speaks, identified many barriers to early detection and access to

services for Korean families of children with autism.

Kwang S. Kim, the President of KCS, said, “KCS Kids’ Line service aims to help family and caregivers promptly respond to development issues and autism-related signs they

find in their children and get them appropriate services as soon as possible. We learned that early intervention is very important for children with autism because it allows them

practice and learn social and communication skills so they could better adapt to the society. I would like to thank University of Pennsylvania and Autism Speaks for

supporting this project for Korean-American community and hope that this program will help a lot of Korean-American children and their families affected by autism.”

KCS Kids’ Line Service Overview

The Asian-American Federation Census Information Center reports that Koreans are the third largest Asian group in the New York City, with a current population of more

than 100,000. According to the NYC Department of Education, Asians comprise 16% of New York City students; among those diagnosed with autism only 8% are Asian. This

difference suggests substantial under-diagnosis of autism in the Korean community. A recent study on the prevalence of autism in South Korea found similar results, with twothirds

of those on the autism spectrum previously undiagnosed and receiving no specialized services.

Under-diagnosis of autism in the Korean community may be driven by lack of awareness, stigma, and lack of access to linguistically and culturally appropriate

services. Language is a significant barrier among Korean-Americans seeking services in New York.

The goals of the KCS Kids’ Line are to ensure Korean-American children with autism in the greater New York area receive timely and appropriate services, to provide better

support for parents and families of those on the spectrum, and to promote autism awareness and greater access to resources about ASD.

The KCS Kids’ Line will serve, but not be limited to, parents of children from birth to 3 years of age with concerns about autism or other developmental delays. These parents will be able to call, e-mail or walk in to receive information. Autism-specific toolkits and resources that have been translated into Korean will be available for parents at the

event and also online at Autism Speaks’ website: http://www.autismspeaks.org/korean. KCS will continue to build knowledge about autism and related services in the greater

New York City area and develop relationships with schools and community organizations to connect older children and their parents with resources they need.

KCS has partnered with Autism Speaks, the George Washington University and the University of Pennsylvania to prepare the KCS Kids’ Line service. Autism Speaks

supports KCS by sharing their toolkits and resources, providing KCS coordinators with relevant trainings, education, and guidance. George Washington University and the

University of Pennsylvania helped KCS base the structure and content of the call line on previous research findings, translated existing materials for families into Korean, and

provided general guidance on the implementation of the call line. The University of Pennsylvania will evaluate the Kids’ Line service to determine its effectiveness in

increasing the number of Korean children with suspected autism who are referred for evaluation and services.

About Autism

Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders – caused by a combination of genes and

environmental influences. These disorders are characterized, in varying degrees, by communication difficulties, social and behavioral challenges, as well as repetitive behaviors. An estimated one in 68 children in the U.S. is on the autism spectrum.

About KCS

Korean Community Services of Metropolitan New York (KCS) was founded in 1973 as the first community-based service agency in the Korean community. KCS is a non-profit

organization supported by government agencies, foundations, corporations and concerned individuals. KCS serves primarily but not limited to the Asian-American

immigrant population within the greater New York area. KCS’ objectives are to develop and deliver a broad range of community services to meet the various needs of the

community. To achieve these obj
ectives, KCS provides various professional community services within the areas of Aging, Community, Workforce Development, and Public Health.

About Autism Speaks

Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the causes, prevention, treatments and a cure for

autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks was founded in

February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Mr. Wright is the former vice chairman of General Electric and chief executive officer of

NBC and NBC Universal. Since its inception, Autism Speaks has committed nearly $200 million to research and developing innovative resources for families. Each year

Walk Now for Autism Speaks events are held in more than 100 cities across North America. On the global front, Autism Speaks has established partnerships in more than

40 countries on five continents to foster international research, services and awareness. To learn more about Autism Speaks, please visit AutismSpeaks.org.

Sullivan (Matt Carey) | April 17, 2014 at 23:19

Again, no words here represent any agency, committee or candidate.

Thanks!

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

« Older Entries

MN Health Department Will Hold A Somali Autism Event To Talk Down @ US

idilabdull | April 17th, 2014
Comments Off on MN Health Department Will Hold A Somali Autism Event To Talk Down @ US

Minnesota Department of Health is probably one of my least favorite state agencies, yet it is charged with important autism responsibilities.

So, we have been asking MDH to hire Somali autism staff for years now since back in 2011, they finally do and initially we thought – yay! Not so fast. Just because someone looks like you does not mean they care or even understand your concerns. 
They are under the child and maternal health at MDH who is under Ms. Diebel who is a very diplomatic and charming person, but could care less about any mother’s health nor any child’s health. Then there is Ms. Dalbec – the village idiot whom I am not sure how exactly she go the job of supervising children with special health care needs dept, maybe she is related to someone there. 
Anyway, in their planning of this Somali autism event – they willingly and purposefully excluded any Somali AUTISM parent. Think about that a bunch of people whose children DO NOT have autism plan an autism event. They say in Africa if you want to know what is wrong with a patient – ask them. Cudurka iyo xanuunka – qofka bukka ayaa la waydiiyaa. 
Not MDH, they rather talk down at us, instead of engaging Somali autism parents. Then comes the icing of their ignorance – they call this stupid event Let’s talk about autism and dispel the myths. Now what now? Are they kidding me. Our children with autism are in their teens and they want to talk about the signs of autism to us now – years and even decades later. What? Oh and what myth exactly? the fact that Vaccines do not cause autism. Oh wait, that is not a myth – endless research has been done proofing that.
Yet, bunch of village idiots and over-rated government bureaucrats exclude the real people dealing with autism and come up with outdated and stupid idea for a Somali autism event. Seriously, can someone please fire MDH’s child and maternal health leaders, then combine MDH with DHS so that we have ONE state agency of MN department of health and human services. Imagine if DHS Commissioner Jesson was in charge over there – there would have been no talking down to anyone. 
Let me explain what the charge for MDH is in simple terms as it was explained to me by previous MDH Commissioner Magnan. It is Assurance, Assessment and Policy. In other words, assure the public by informing them about whatever medical condition they are dealing with by giving them INFORMATION about services and resources. They clearly have failed in assuring Somali autism families have information about what services and resources are available for autism and the evidence is that our kids get diagnosed years later, don’t get access to early intervention and rarely understand or have waivers. Assessment – assess and do disease surveillance. They also failed that as Minnesota does not have any autism surveillance or assessment system, such as the ADDM. In fact, they have refused to apply it for the last CDC grant opportunity.
Then there is the policy charge which is similar to enforcing and explaining various health policies. I remember once when I was explaining to their village idiot supervisor the difference between fee for service and managed care and how they differently cover early autism intervention. I am sorry, parents should not be explaining to our state health dept anything, let alone any policy. They should be on top of things and they clearly are out to lunch and clueless. If you are getting frustrated with MDH’s lack of real tangible support, imagine how we as autism parents feel. While we deal with the real pain, frustration and desperation of autism for years now, MDH is busy trying to still learn autism myths and explain signs to us when our kids are in their teens. Sort of like – dhalaankii dhalmadda baray hooyadiis. 
My advice, explain what services, treatments and resources are available to help our kids, apply for the next ADDM grant at CDC and for God sake learn about MN autism policy so you can explain it to all low income parents who have managed care coverage. Finally, unless there are Somali adults who have nonverbal autism – try not to find the Somali version of Dr. Offit and try to sell us autism existed in Somalia. It did not – period. 
Thanks!
Above words do not represent any committee, agency or candidate.
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

« Older Entries

MN GOP Will Hold A Somali Community Listening Session – How Does This Relate To Autism

idilabdull | April 16th, 2014
Comments Off on MN GOP Will Hold A Somali Community Listening Session – How Does This Relate To Autism

Alright so, if you read this blog then you surely know and understand the connection between autism therapy, treatment, research, services and resources to Politics. 

If not – let me explain a little. A politician is the person that often writes policies and guidelines that dictate what therapy, what research, what funding, what services and what resources will be allocated or not allocated for autism children & adults. For example, what therapies will be covered, for how long, for whom in Minnesota are usually created and passed by Minnesota state legislatures like Rep Kahn who has done zero, zilch and nada for autism thus far – even though her district 60B has the highest autism rate in the state. 
Another example, Governor Dayton’s administration has refused to apply the CDC autism surveillance system. Another example, Rep Huntley has tried to give the upper wealthier autism families over $25 million from the health & human services budget last year while he told the low income autism families to get $12 million. Think about that difference and the level of inequality it would have created. Thank God it was not adopted by Sen Lourey’s senate health finance committee. 
In other words, politicians in Minnesota most likely created whatever policy in health to education to economics to etc. Now what does this have to do with MN GOP? Well as minorities we don’t usually vote for them or even understand them. Or at least that’s what we think. For instance, in Spring of 2010 was the first year we (Somali autism parents) advocated in MN State Capitol – we found out HF359 by Rep Norton a DFLer from Rochester wanted to ……guess, mandate private insurance companies to pay for ABA therapy and drum roll pls…….throw low income/minority autism kids under the bus. I will never forget that day because it has totally changed how I vote and now I actually read the ballot instead of just circling all D’s. 
All of the MN DFLer’s in that committee which included Reps Huntley, Fritz, Clark, Hayden, Thissen, etc voted to help upper/middle and screw low income minority autism families. By the same token, MN GOP Reps which included Abeler, Gottwalt, Kiffmeyer, etc voted in support of low income/minority autism families. Let’s think about that for a minute – because that can’t be right?
Well – it was and their roll call voice vote on record is the proof in the pudding. 
From that day on, we have asked MN GOP to rethink their outreach strategy given they lose elections by as little as 200 to 312 to 9000 votes. And, I am sooooo glad this day has finally come. They are coming to listen, learn and connect with our community. 
I really thank their new leadership Mr. Keith Downey, Janet B, Chris F and of course Dan Severson. Below is the time and location. Please share this with your family and friends because voting for the same people and expecting different policies is insane. 

Thursday, April 24, 2014 from 5:00 PM to 7:30 PM (CDT)

Minnesota Republican Party Office
2200 East Franklin Avenue 
Suite 201
Minneapolis, MN 55404
As usual, above words do not represent any agency, committee or candidate.
Thanks!
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

« Older Entries

Dr. Offit – The Profit Doctor and Menace to Autism Families

idilabdull | April 16th, 2014
Comments Off on Dr. Offit – The Profit Doctor and Menace to Autism Families

Alright – so if you read or follow national autism news or blogs then you have heard of Dr. Paul Offit. Or as I like to call him the profit doctor and a menace to so many autism parents. 

Honestly, I just don’t see what CDC sees in him. I personally like and respect CDC autism leadership and just can’t understand their relationship with Offit. The things that come out of his mouth are truly cruel and disturbing. He tells parents that have done alternative and biomedical autism treatments – we are quacks. He has written more books than I care to list here. From false hope to looking for a delusional cure for autism. In fact, at IACC’s last meeting, a sub-group to look into alternative and biomedical autism treatment so that more research is done on this was formed. Dr. Offit can learn a thing or two from Dr. Insel who I like to refer to as the calm and reasonable doctor who regardless of how frustrated autism parents get with him seems to find a calm and reasonable way to address their concerns. 
My least favorite Dr. Offit book is do you believe in magic. My answer to Dr. Offit – You damn skippy I believe in magic for my son with autism. What parent whose child has a medical condition does not believe in magic, a cure and a recovery even if it does not exist at the time? To have faith is to believe in magic and good health. 
Seriously, think about that. Any parent that takes their child for any medical condition to a doctor and autism is no different believes in the magic of medical science. The difference is most parents get the hope that their child will get better if they do 1,2,3 steps and take 1.2,3 medicine or therapy. For autism, we are told – yes autism is a medical condition, but we don’t have a cause, a cure, not sure which therapy will work for sure – have a nice day. Imagine that for a minute. Oh, and if you are a minority – try ABA therapy – but long wait list, immature discharge and crappy therapist await you – but really have a nice day. 
This is our reality as autism parents and as you know worse for minority autism families. 
Then comes Dr. Proffit – sorry meant Offit and he writes book after book after book telling us to not believe in magic, hope, autism is a born medical condition (oh please) if that was the case -where are the adult nonverbal Somalis born with autism in Somalia. Never mind your child was talking, eating regular foods, crossing the street safely, sleeping and all of that lost magically, but don’t you dare believe in magic. This guy drives me nuts. 
Personally – I have no respect for anyone whose children are healthy who takes a cheap shot at struggling autism parents who probably have not slept eight hours straight for more than two nights including me for years. Really the audacity of him to insult and belittle those whose shoes he never walked on is beyond belief. 
Therefore, I support Autism Action Network’s latest post in asking the following;
To call Offit’s bosses and ask them to tell Offit to stop making things up and being stupid. (ok I added the stupid part). 
Amy Gutman, President – University of Pennsylvania, 215-898-7221
Steven M. Altschuler, MD, CEO, Children’s Hospital of Pennsylvania 267-426-6143
 
Please share this with friends and family – it is time for Dr. Offit to have some compassion for autism families and stop speaking out of horse’s you know what. If research does not exist for alternative treatments, then let’s do some and not ridicule desperate autism parents. It is the medical professional’s responsibility to find answers and not dismiss families. 
As usual, above words do not represent any agency, candidate or committee.
Thanks!
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

« Older Entries