Monthly Archives: May 2014

Comments Off on Injustice Anywhere Is A Threat To Justice Everywhere Was Said By MLK

Alright, so if you read this blog – then you know I relentlessly and consistently advocate for the underdog autism families who are usually and unfortunately low income and minorities. 

There has been research after research stating disparity in autism diagnoses and treatment for minority children is high even when the funding source is from Medicaid, such as Minnesota’s double standard autism coverage. Then I started thinking why is that and what can be done about it. 
For one – we know there is injustice in racial health disparity overall, but we don’t really know why and how to fix that. This country spends billions (not millions) of dollars in decreasing health disparity – yet no hope in sight. There has been zero studies or research at least for autism that dig deep into why there is autism diagnoses and treatment discrimination. I believe if we knew why then we can find a cure for this which could save billions not to mention the human lives being affected. 
While this research is being thought about – I have several theories. As a Black autism mom whose child has classic autism – I have seen discrimination in almost everywhere. Usually it is subtle and it is things like your child not getting the full hours he/she needs, the program is not culturally appropriate even though autism is behavior and behavior is about culture, your child gets mediocre therapists, you are put on years wait list which defeats the notion of early intervention is the best hope, or you are told there is no hope and discharged prematurely.
Now, while these things usually come from the top – so many in the middle and lower staff tolerate it and look the other way. This is my reason for this post today. 
I saw the youtube below and thought what if that White woman looked the other way and let the Black woman go through a clear bias policy. What if Rosa Parks said – you know I am too tired and I will just sit in the back of the bus, what if Medgar Evers said “ah what the heck, this is too much and I am just going to concentrate in my own little life”. What if Lincoln did not say this “In giving freedom to the slave, we assure freedom to the free – honorable alike in what we give, and
what we preserve. We shall nobly save, or meanly lose, the last best hope of earth. Other means may succeed; this could not fail. The way is plain, peaceful, generous, just – a way which, if followed, the world will forever applaud, and God must forever bless.” Lincoln’s Second Annual Message to Congress, December 1, 1862″

You see, we all have choices and the choices we make today affect our family tomorrow and generations after. Imagine when in America folks of color become the majority (this will happen according to statistics and growth in the next few decades) – wouldn’t you want them to stand up for you as the White minority person? I ask anyone who sees autism bias policy towards any child or family to stand up, to speak up and to fight injustice because as Dr. Martin Luther King said “Injustice anywhere is a threat to justice everywhere.” Fight autism inequality from every corner, every valley and every mountain. You will sleep better and your children and their children will benefit from it. 
Here is what Frederick Douglass said that I ask Autism Therapist and providers to live by; “Find out just what any people will quietly submit to and you have the exact measure of the injustice and wrong which will be imposed on them.

Above words do not reflect any candidate, agency or committee.
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on Icing On The Cake From DHS Except the Cake Is Missing For Low Income Managed Care Autism Kids

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

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

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

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

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

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

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

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

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

Icing is only good if there is cake under it.

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

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

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


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

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on Drama – Drama – DRAMA @ Autism Congressional Hearing on 5/20/14

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

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

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

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

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

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

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

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

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

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

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

The Hill had a story on autism feud:

LBRB blogged about this as well among many others.


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

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on New Congressional Bill To Re-Auth CAA Is Introduced HR-4631

Couple of weeks ago, Congress introduced a legislation to reauthorize the Combating Autism Act of 2011 which is to sunset this year. IACC – the Federal autism advisory committee that I serve operates under CAA. 

The author is Congressman Smith (R-NJ) who has been a champion for national & international autism issues including Africa. It has 44 cosponsors so far which I will list here. Notice, there is no Minnesota congressional person cosponsoring thus far. It is worth noting the last CAA of 2011 – I literally advocated in all eight congressional representatives and both U.S Senators to sponsor and vote for it which they ALL did. I think the first one to say yes was Rep Kline, the last was Rep Cravaack and the easiest to convince was Rep Ellison. I even harassed Cantor and Reid to put it on the schedule for floor vote then begged the Obama legislative staff to ask him to sign which he did (if you remember) the day CAA 2006 expired. 
Anyway, as much fun as that was (not really), I am not advocating for this bill but of course wish and hope it passes. I am sure it will. If you read the current language – it seems to me the self autistic adults got what they wanted, the anti vaccine advocates got some of their language, but what is missing is addressing racial disparity or even having a mandated diverse person. Oh well – I hope someone contacts the Congressional Black Caucus to assure such language gets in. Don’t worry, it won’t be me as my advocacy work is winding down in both state and federal. This time they also added members nominated from Congress – now only US HHS Secretary nominates public members. 
Below is the current language and the current sponsors. 
[Congressional Bills 113th Congress]
[From the U.S. Government Printing Office]
[H.R. 4631 Introduced in House (IH)]
2d Session
H. R. 4631
To reauthorize certain provisions of the Public Health Service Act
relating to autism, and for other purposes.
May 9, 2014
Mr. Smith of New Jersey (for himself, introduced the following bill; which was
referred to the Committee on Energy and Commerce
To reauthorize certain provisions of the Public Health Service Act
relating to autism, and for other purposes.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
This Act may be cited as the ``Combating Autism Reauthorization Act
of 2014''.
(a) National Autism Spectrum Disorder Initiative.--Part R of title
III of the Public Health Service Act (42 U.S.C. 280i et seq.) is
(1) by redesignating sections 399AA through 399EE as
sections 399BB through 399FF, respectively; and
(2) by inserting before section 399BB, as redesignated, the
``(a) Establishment.--For the purposes described in subsection (b),
the Secretary shall designate an official within the Department of
Health and Human Services to establish and oversee a National Autism
Spectrum Disorder Initiative (in this section referred to as the
``(b) Purposes.--The purposes of the Initiative shall be--
``(1) to implement a strategic plan for the conduct of, and
support for, autism spectrum disorder research, taking into
account the strategic plan developed by the Interagency Autism
Coordinating Committee under section 399DD(b); and
``(2) to ensure that autism spectrum disorder research
programs and activities of the Department of Health and Human
Services are not unnecessarily duplicative of other Federal
research programs and activities.''.
(b) Developmental Disabilities Surveillance and Research Program.--
Section 399BB of the Public Health Service Act (42 U.S.C. 280i), as
redesignated, is amended--
(1) in subsection (a), by inserting ``for children and
adults'' after ``reporting of State epidemiological data'';
(2) in subsection (b)(1), by striking ``establishment of
regional centers of excellence'' and inserting ``establishment
or support of regional centers of excellence'';
(3) in subsection (b)(2), by striking ``center to be
established'' and inserting ``center to be established or
supported''; and
(4) in subsection (e), by striking ``2014'' and inserting
(c) Autism Education, Early Detection, and Intervention.--Section
399CC(g) of the Public Health Service Act (42 U.S.C. 280i-1), as
redesignated, is amended by striking ``2014'' and inserting ``2019''.
(d) Interagency Autism Coordinating Committee.--
(1) Appointment of members by congressional leaders.--
Section 399DD(c)(1) of the Public Health Service Act (42 U.S.C.
280i-2(c)(1)), as redesignated, is amended--
(A) in subparagraph (D), by striking ``and'' at the
( by redesignating subparagraph (E) as
subparagraph (I); and
(C) by inserting after subparagraph (D) the
``(E) one member appointed by the Speaker of the
House of Representatives;
``(F) one member appointed by the majority leader
of the Senate;
``(G) one member appointed by the minority leader
of the House of Representatives;
``(H) one member appointed by the minority leader
of the Senate; and''.
(2) Preventing duplication.--Section 399DD(b) of the Public
Health Service Act (42 U.S.C. 280i-2(b)), as redesignated, is
(A) in paragraph (5), by striking ``and'' at the
( by redesignating paragraph (6) as paragraph
(7); and
(C) by inserting after paragraph (5) the following:
``(6) include in such strategic plan recommendations to
ensure that autism spectrum disorder research programs and
activities of the Department of Health and Human Services are
not unnecessarily duplicative of other Federal research
programs and activities; and''.
(3) Extension of sunset provision.--Section 399DD(f) of the
Public Health Service Act (42 U.S.C. 280i-2), as redesignated,
is amended by striking ``2014'' and inserting ``2019''.
(e) Report to Congress.--Section 399EE of the Public Health Service
Act (42 U.S.C. 280i-3), as redesignated, is amended--
(1) in subsection (a), by striking ``Combating Autism
Reauthorization Act of 2011'' and inserting ``Combating Autism
Reauthorization Act of 2014''; and
(2) in subsection (b)--
(A) in paragraph (1), by striking ``provisions of
the Combating Autism Act of 2006'' and inserting
``provisions of this part, section 404H, and section
( in paragraph (2), by striking ``provisions of
Combating Autism Act of 2006'' and inserting
``provisions of this part, section 404H, and section
(C) in paragraph (3), by striking ``Combating
Autism Act of 2006'' and inserting ``Combating Autism
Reauthorization Act of 2011'';
(D) in paragraphs (4) and (5), by striking ``over
the 6-year period beginning on'' each place it appears
and inserting ``since'';
(E) in paragraph (8), by striking ``and'' at the
(F) in paragraph (9), by striking the period at the
end and inserting ``; and''; and
(G) by adding at the end the following:
``(10) a description of the actions taken to implement, and
the progress made on implementation, of the strategic plan
developed by the Interagency Autism Coordinating Committee.''.
(f) Authorization of Appropriations.--Section 399FF of the Public
Health Service Act (42 U.S.C. 280i-4), as redesignated, is amended--
(1) in subsection (a)--
(A) by striking ``399AA'' and inserting ``399BB'';
( by striking ``fiscal years 2012 through 2014''
and inserting ``fiscal years 2015 through 2019'';
(2) in subsection (b)--
(A) by striking ``399BB'' and inserting ``399CC'';
( by striking ``fiscal years 2011 through 2014''
and inserting ``fiscal years 2015 through 2019''; and
(3) in subsection (c)--
(A) by striking ``399CC'' and inserting ``399DD'';
( by striking ``$161,000,000 for each of fiscal
years 2011 through 2014'' and inserting ``$190,000,000
for each of fiscal years 2015 through 2019''.
(a) In General.--Not later than 24 months after the date of
enactment of this Act, the Comptroller General of the United States
shall complete a study and submit to the Congress a report on the
demographics and needs, if any, of individuals in the United States
with an autism spectrum disorder (in this section referred to as
(b) Issues To Be Addressed.--The study and report under subsection
(a) shall--
(1) address the demographics of individuals with ASD making
the transition from a school-based support system to adulthood;
(2) address the needs, if any, of adults with ASD with
respect to--
(A) community integration;
( housing and residential supports;
(C) employment;
(D) transportation;
(E) vocational training and rehabilitation;
(F) continued education;
(G) health care and social services;
(H) speech therapy;
(I) public safety; and
(J) day habilitation activities, including those to
provide a safe, respectful, and stimulating environment
that allows participants to become active members of
their community;
(3) provide an overview of Federal, State, and local
government policies and programs, and any available private
(including private nonprofit) sector assistance, for addressing
the needs identified in paragraph (2); and
(4) provide policy recommendations to--
(A) improve outcomes for adults with ASD making the
transition from a school-based support system to
( enhance the effectiveness of the policies,
programs, and assistance described in paragraph (3);
(C) ensure integration of and collaboration among
services for addressing the needs of adults with ASD;
(D) encourage independent living, equal
opportunity, full participation, and economic self-
(c) Survey.--
(1) In general.--In carrying out this section, the
Comptroller General shall conduct a survey of public and
private sector stakeholders on--
(A) the needs, if any, of adults with ASD;
( the services and resources available for
addressing such needs; and
(C) the effectiveness of such services and
(2) Stakeholders.--The stakeholders to be surveyed under
paragraph (1) include the following:
(A) Individuals from the business community
representing both large and small businesses.
( Institutions of higher education, community
colleges, vocational schools, and university centers
for excellence in developmental disabilities.
(C) Social service providers, including case
management experts and health care providers.
(D) Vocational rehabilitation experts.
(E) State and local housing departments and
nonprofit organizations that provide housing services
for individuals with disabilities.
(F) Individuals with ASD, parents of individuals
with ASD, and representatives from advocacy groups that
focus on individuals with ASD.
(G) Officials or employees of the Federal
Government responsible for overseeing disability
services at each of the following departments and
(i) The Department of Health and Human
Services, including the Administration for
Children and Families, the Centers for Disease
Control and Prevention, the Centers for
Medicare & Medicaid Services, the Health
Resources and Services Administration, and the
Administration for Community Living.
(ii) The Department of Education.
(iii) The Department of Housing and Urban
(iv) The Department of Labor.
(v) The Department of Justice.
(vi) The Department of Transportation.
(vii) Any other Federal departments and
agencies determined appropriate by the
Comptroller General.
Cosponsor Date Cosponsored
Rep. Doyle, Michael F. [D-PA-14]* 05/09/2014
Rep. McMorris Rodgers, Cathy [R-WA-5]* 05/09/2014
Rep. Van Hollen, Chris [D-MD-8]* 05/09/2014
Rep. Sessions, Pete [R-TX-32]* 05/09/2014
Rep. Wolf, Frank R. [R-VA-10]* 05/09/2014
Rep. Stivers, Steve [R-OH-15]* 05/09/2014
Rep. Meehan, Patrick [R-PA-7]* 05/09/2014
Rep. Moran, James P. [D-VA-8]* 05/09/2014
Rep. Blackburn, Marsha [R-TN-7]* 05/09/2014
Rep. Miller, Jeff [R-FL-1]* 05/09/2014
Rep. Walorski, Jackie [R-IN-2]* 05/09/2014
Rep. Larson, John B. [D-CT-1]* 05/09/2014
Rep. Jackson Lee, Sheila [D-TX-18]* 05/09/2014
Rep. Harper, Gregg [R-MS-3]* 05/09/2014
Rep. Lance, Leonard [R-NJ-7]* 05/09/2014
Rep. Meadows, Mark [R-NC-11]* 05/09/2014
Rep. Marino, Tom [R-PA-10]* 05/09/2014
Rep. Deutch, Theodore E. [D-FL-21]* 05/09/2014
Rep. Rooney, Thomas J. [R-FL-17]* 05/09/2014
Rep. Pompeo, Mike [R-KS-4]* 05/09/2014
Rep. Aderholt, Robert B. [R-AL-4]* 05/09/2014
Rep. Bachus, Spencer [R-AL-6]* 05/09/2014
Rep. Gibson, Christopher P. [R-NY-19]* 05/09/2014
Rep. Miller, Candice S. [R-MI-10]* 05/09/2014
Rep. Young, Don [R-AK-At Large]* 05/09/2014
Rep. King, Peter T. [R-NY-2]* 05/09/2014
Rep. Shea-Porter, Carol [D-NH-1]* 05/09/2014
Rep. DeLauro, Rosa L. [D-CT-3]* 05/09/2014
Rep. Murphy, Tim [R-PA-18]* 05/09/2014
Rep. Fitzpatrick, Michael G. [R-PA-8]* 05/09/2014
Rep. Terry, Lee [R-NE-2]* 05/09/2014
Rep. Kelly, Mike [R-PA-3]* 05/09/2014
Rep. Yoder, Kevin [R-KS-3]* 05/09/2014
Rep. Matheson, Jim [D-UT-4]* 05/09/2014
Rep. Roe, David P. [R-TN-1] 05/13/2014
Rep. Jenkins, Lynn [R-KS-2] 05/13/2014
Rep. McGovern, James P. [D-MA-2] 05/13/2014
Rep. Israel, Steve [D-NY-3] 05/13/2014
Rep. Slaughter, Louise McIntosh [D-NY-25] 05/13/2014
Rep. Vargas, Juan [D-CA-51] 05/13/2014
Rep. Scott, David [D-GA-13] 05/15/2014
Rep. Grimm, Michael G. [R-NY-11] 05/15/2014
Rep. Fortenberry, Jeff [R-NE-1] 05/15/2014
Rep. Bishop, Sanford D., Jr. [D-GA-2] 05/15/2014
It is also worth noting, last Friday for some odd reason and with no warning – subcommittee on House Oversight and Government Reform announced a Congressional Autism Hearing for tomorrow May 20, 2014 at 9am in Rayburn House Bldg. The testifiers will be; 
Director, National Institute of Mental Health
Chair, Interagency Autism Coordinating Committee
Acting Assistant Secretary, Office of Special Education and Rehabilitative Services
U.S. Department of Education

Director, Health Care
U.S. Government Accountability Office
Above words do not reflect any committee, agency or candidate.
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on 2014 MN State Legislature Update on Autism – Equality and Fairness Prevail AGAIN

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on IMFAR Conference in Atlanta – Highlights and My Favorites

The International Meeting for Autism Research (IMFAR) by the International Society for Autism Research (INSAR) was happening in Atlanta this year and here are some highlights and my take.

First, I think this is such an important annual scientific conference. We all know that there is no cause or cure for autism symptoms. No, I don’t mean when we find (GOD WILLING) a cure, we will change autistic people. It just means we will get rid or find a way to manage the symptoms of autism as well as the root cause. 
Now, this conference is probably the Mecca for autism researchers around the globe and this year they had a section for Autism in Africa which as an African American autism mother, I am interested in. Sadly, the are almost no adequate services, research, outreach and awareness in Africa along with this persistent stigma that is associated with all disabilities and mental health conditions. 
Here is that discussion;

Autism in Africa

There is a dearth of autism research on the African continent; this scientific panel session aims to highlight recent research progress addressing this gap. The panel includes scientific presentations from two sub-Saharan African countries, using a combination of qualitative and quantitative methodologies and reporting on both urban and rural African populations. Altogether, the findings from these studies highlight the major barriers to appropriate support for families of children with autism in Africa (including the severe shortage of diagnostic and educational services, lack of awareness about autism and its causes, and high levels of stigma), and report on a promising scalable model that can help tackle these problems by training frontline community-based health extension workers. The challenges and opportunities discussed in these presentations apply not just to the countries under study, but have relevance for the entire African continent and low/middle income countries elsewhere. During the panel discussion these common themes will be reviewed and priority areas for future research and opportunities for intervention will be highlighted, in order to facilitate future autism research, advocacy and capacity building efforts.
Thursday, May 15, 2014: 1:30 PM-3:30 PM
Marquis D (Marriott Marquis Atlanta)
1:30 PM
Services for Children with Autism and Their Families in Ethiopia: Service Providers’ Perspectives
B. Tekola Gebru, Y. Baheretibeb, I. Roth, D. Tilahun, A. Fekadu, C. Hanlon and R. A. Hoekstra

1:55 PM
Perceived Causes of Autism in Rural and Urban Multi-Cultural Context on the Kenyan Coast
J. K. Gona, C. R. Newton, K. Rimba, R. Mapenzi, M. Kihara and A. Abubakar

2:20 PM
Increasing Autism Awareness Among Rural Community-Based Health Extension Workers in Ethiopia: The Health Education and Training+ (HEAT+) Project
R. A. Hoekstra, B. Tekola Gebru, D. Tilahun, A. Fekadu, Y. Baheretibeb, I. Roth, B. Davey and C. Hanlon

There were also discussions about nonverbal autism and communication by Dr. Connie Kasari from UCLA. Sadly, there is not a lot of research on nonverbal autism even though over 25% of children with autism are nonverbal and probably over 80% of Somali ASD kids are nonverbal. I think this is one of the areas we need to improve research by finding out why and how to help these children and adults with nonverbal autism.


Joint Engagement and Social Communication in Minimally Verbal Children with ASD

Thursday, May 15, 2014
Atrium Ballroom (Marriott Marquis Atlanta)
A. Holbrook1 and C. Kasari2, (1)Graduate School of Education and Information Studies, University of California, Los Angeles, Los Angeles, CA, (2)Center for Autism Research and Treatment, University of California Los Angeles, Los Angeles, CA
Background: Both joint engagement and language have been studied in the context of parent-child dyads. It is well established that episodes of joint engagement facilitate children’s early language development, but to our knowledge the relationship between joint engagement and social language between child and therapist is yet to be examined.

Objectives: This study examined the association between joint engagement and child language abilities within therapist-child interactions with minimally verbal children diagnosed with autism spectrum disorders.

Methods: Participants were selected from the large multi-site study, Characterizing Cognition in Nonverbal Individuals with ASD. All children used fewer than twenty spontaneous, functional words during a language sample, and had received at least two years of prior intervention. Videotaped baseline intervention sessions were coded for 61 children between the ages of 5 and 8 years. Episodes of joint engagement were defined as time a child and therapist coordinated their involvement around an object or activity. The mean length of joint engagement was used from the first intervention session. Child language abilities were: (1) total social communicative utterances (TSCU), which excluded all scripted utterances; (2) number of different word roots (NDWR), which represented the variety of novel words; (3) total number of comments (TCOM), defined as utterances used for the function of sharing information, or describing an action or object in their attentional focus. The language variables were averaged over the first two sessions to gain a more accurate representation of abilities from this minimally verbal population.

Results: The Spearman’s rho revealed a statistically significant relationship between the mean length of joint engagement and TSCU (rs = 0.261, p < 0.05) and TCOM (rs = 0.309, p< 0.05). However, mean length of joint engagement was not significantly correlated with the NDWR.

Conclusions: Language abilities are a key target for minimally verbal children with autism spectrum disorders. Results demonstrate that joint engagement is associated with social communication and commenting language. Joint engagement between a child and a therapist may be a critical factor to facilitate social language development of minimally verbal children.

There was another interesting topic about verbal communication and cultural difference. I thought this was very true and we need more research in this area since cultures vary which might affect a child’s ability to verbally communicate.

A Cross Cultural Look at Parenting Beliefs about Child Rearing and Verbal Interaction with Their Children with Autism Spectrum Disorders

Thursday, May 15, 2014
Atrium Ballroom (Marriott Marquis Atlanta)
V. Smith, University of Alberta, Edmonton, AB, Canada

According to best practice guidelines for treating children with autism spectrum disorders (ASD), including and training parents to assist their child’s communication development is considered an essential component and a natural step to provide consistent, daily support in early childhood. Research suggests that parents can learn to be effective language facilitators; however, we know very little about the cultural differences, including beliefs and practices, of parents of children with ASD. In fact, the sporadic observations of non-Western cultural groups have made it clear that the large literature on language facilitation strategies primarily describes Western parent-child interaction patterns.  


The aim of the present study was to 1) review the literature on early parent-child interaction across cultures for typically developing children and for children with ASD. This review served as the basis of a questionnaire that was developed 2) to better understand parents’ beliefs about child rearing and ‘how to talk to children’ to promote language development in four cultural groups of parents of children with ASD: South Koreans, South Indians, Euro-Canadians, and Indo-Canadians.


Items in the questionnaire were designed in consultation child language scholars, speech and language pathologists, health care workers from both Korea, Indian, and Western cultural groups and addressed: independence of child’s learning, nature of language learning, and early language milestones, beliefs about disability, and parenting. The questionnaire was administered to 128 South Korean, 71 Indian families of children with ASD and contrasted with 65 Euro-Canadian and Indo-Canadian families of children with ASD.


Differences across the four cultural groups were found in aspects of socialization, the value of talk, beliefs about disability, the way status is handled in interaction, and understanding about teaching language to children.


Interpretation of the findings was made by attempting to understand the cultures and their implied values and beliefs. Family functioning has a huge impact on the effectiveness of interventions and so too do their cultures. The beliefs and values that inform family functioning influence the creation of each child’s unique ‘developmental niche;’  thus better understanding of culture may helps us to design interventions that are applicable to families of diverse cultural back grounds.

One more area I am interested was autism, services and diversity and there were quite few in this conference, here are some of my favorites. As you can see in below list – there were autism and Islam, autism and African American, Hispanic, Socio-Economic, Parental Stress and so much more. There was a Somali parent that went there this time which I am happy about. The goal is for every parent to learn how to advocate for their child and others in their community because united we negotiate and divided we beg.


Thursday, May 15, 2014: 5:30 PM-7:00 PM
Atrium Ballroom (Marriott Marquis Atlanta)
5:30 PM
156 Access to Therapy for Children with Autism: A
Population-Based Analysis

T. W. Benevides, H. J. Carretta and S. J. Lane

5:30 PM
157 Traits of Autism Spectrum Disorder and Co-Occurring Mental Health Problems Among Prisoners
H. L. Hayward, L. Underwood, J. M. McCarthy, E. Chaplin and D. G. Murphy

5:30 PM
158 Availability of BCBA Providers As a Barrier to Service Implementation in ASD
R. P. Travis, A. P. Juárez, C. R. Newsom and Z. Warren

5:30 PM
159 Autism Speaks Early Access to Care Community Screening Event: Description and Preliminary Outcomes
L. M. Elder, M. Chen, A. Halladay, A. M. M. Daniels and P. Herrera

5:30 PM
161 Disparities in Utilization of Services Around the Time of Autism Spectrum Disorder Diagnosis
T. Savion-Lemieux, M. Elsabbagh, M. Steiman, P. Szatmari, S. E. Bryson, E. Fombonne, T. Bennett, S. Georgiades, P. Mirenda, W. Roberts, I. M. Smith, T. Vaillancourt, J. Volden, C. Waddell, L. Zwaigenbaum, R. Bruno, E. K. Duku and C. Shepherd

5:30 PM
162 Closing the Gap Between Research Policy and Practice
C. Ramsden, A. Roberts, M. Uljarevic, S. Carrington, L. J. White, L. Morgan and S. R. Leekam

5:30 PM
163 Development and Validation of a Psychosocial Quality of Life Questionnaire for Individuals with Neurodevelopmental Disorders
L. A. Markowitz, C. Reyes, R. Embacher, L. L. Speer, N. J. Roizen and T. W. Frazier

5:30 PM
164 Family Access to Disability Services: Is There Hope?
V. H. Mackintosh and B. Myers

5:30 PM
165 Evaluating the Impact of Statewide Community-Based Training for Early Intervention Providers
L. V. Ibanez, S. R. Edmunds, C. M. Harker, E. A. Karp and W. L. Stone

5:30 PM
173 Multisensory Integration and Temporal Synchrony in Autism
E. Smith, S. Zhang and L. Bennetto

5:30 PM
5:30 PM
179 The Shotgun Approach or Acceptance: Parents’ Treatment Selection for Children with ASD
B. E. Drouillard, M. N. Gragg, R. T. Miceli, M. M. Ben-Aoun and S. C. Popovic

Above words do not reflect any agency, committee or candidate.
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on MN Autism Task Force Survives @ MN State Legislature

Ahhh, this was a hard battle – to save the Minnesota autism committee which is a cost free task force that has parents, advocates, providers and state agency reps. It was charged to write and implement an autism statewide plan and is suppose to sunset next year.

But the never get tired of writing bad autism legislation – Rep Norton decided she would dismantle and get rid of the work of so many for so many years. Sadly, many DLFers and few GOP reps took her side by totally mis-understanding the work of this committee and assuming autism’s work can be a done. 
First, let’s explain something – children with autism become adults with autism and the work of autism is never done, ever ever and ever. Autism is a life long neuro-developmental disorder that affects thousands of Minnesota children and families. Furthermore, most states have permanent autism committees or commissions so that families always have someone in their corner. Needless to say, I thought writing this bill was a waste of time, effort and money. Imagine if the hours we spent on this legislation – we spent it on actually helping and supporting individuals with autism and their families. 
At any rate and as we have always done for years now, we fought hard and advocated harder to convince legislatures to NOT eliminate such an important committee. I am glad to say, we prevailed and it was taken out of the health and human services policy omnibus bill in conference committee. We thank all of the conferees who voted to keep the autism task force. They were Rep Mack, Rep Loeffler, Rep Morgan, Sen Lourey, Sen Hayden and Sen Rosen which came out to be the majority of the ten conferees. We hope that we can put this behind us, and unite for the sake of ALL autism children, adults and their families. 
In sum, what passed in conference committee is to implement the autism plan and let the committee continue until it sunsets next year which is exactly the language of the original legislation.
Above words do not reflect any agency, committee or candidate.
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on Autism Speaks Is Getting Better @ Addressing Racial Disparities

OK, so – I have been very critical of Autism Speaks and their narrow views on autism racial disparity. Autism Speaks (AS) has made a habit of only fighting and advocating for those with private insurance while those with public Medicaid insurance were ignored by AS. And, as we all know – low income families mostly have Medicaid and they are disproportionately minorities. 

Well, I am happy to say that AS is changing that view little by little. They did the following recently which is a good start. I hope they continue and start funding minority based autism agencies to educate and empower minority autism parents. AS gives millions of dollars in family grants, yet hardly any of those grantees are agencies of color. That must change if AS is really serious about racial equality and equal access to autism care and autism therapies. 
I would also suggest having their lobbyist advocate for both public and private insurance autism therapy coverage in each state, rather than for private insurance coverage because that alone creates double standard and unequal access to ASD therapy. Finally, I would list in their website minority based advocacy agencies and other support systems to help the under-served families.
Below is what AS did according to a press release on May 1, 2014.

May 01, 2014

In Los Angeles, the Autism Speaks Autism Treatment Network is partnering with minority communities to improve early access to care

By Michele Kipke (left), director of the Autism Speaks Autism Treatment Network Center of Excellence at Children’s Hospital Los Angeles, and Katrina Kubicek (not shown), assistant director for community engagement of the Southern California Clinical and Translational Science Institute.

As a member of the Autism Speaks Autism Treatment Network, Children’s Hospital Los Angeles is dedicated to ensuring quality care and treatment for all children with autism spectrum disorder (ASD). As part of this mission, we’ve embarked on a project to better understand gaps in autism diagnosis and care among our nation’s children – and to develop interventions to address them. 

As many of you know, research has found that Latino and African American children are less likely to receive an ASD diagnosis and intervention services. Yet we have no evidence to suggest that autism rates are actually lower in these communities. Rather, the problem appears to lie in access to care.

Developing programs to address this disparity is important because early intervention is critical for improving health outcomes for children with autism. 

We began our project with a study designed to improve our understanding of the challenges that Latino and African American face in accessing evaluations and treatment for their children. We joined with four regional centers and other local service providers to recruit 56 African American and Latino parents to participate in 10 focus groups.   

At the AS-ATN Center of Excellence in Los Angeles, parents helped staff identify and address cultural barriers to care.

Parents help us understand their challenges
The findings from these focus groups identified three overarching needs:

Parent Education. Overall, Latino and African American parents tended to have limited knowledge about autism before or after their children’s diagnoses. They were aware of their children’s developmental delays. For example, they recognized when a child’s speech was delayed or lost. They likewise were concerned when a child had limited or strained interactions with other children. Yet often, they didn’t identify these symptoms as indicating autism. Lack of support from spouses and other family members often complicated this issue. Too often, the concerned parent was told not to worry or that their child would “grow out of it.” 

Assistance Navigating Complicated Service System. Through our focus groups, we came to understand that many parents were unsure how to get screening or diagnostic evaluation for their children.  Often, their family physicians dismissed their concerns. They were told to come back if their child was not talking by the time he or she started school.

Often, minority parents reported feeling that the disregard for their concerns related to their ethnicity. Our Latino parents clearly expressed the need for pediatricians to learn how to effectively listen and communicate with them.

These parents said that when they were finally referred to an autism center, they felt relief. But even then, many reported facing a new round of challenges. They described how they had to fight for services without knowing what to ask for or what might be most helpful for a child with autism. 

Need for Parental Advocacy Training. Many of our parents also reported they lacked the legal resources and strong advocacy skills needed when trying to get services for their children – both at autism care centers and during their child’s Individualized Education Plan (IEP) meetings at school. In our focus groups, we identified cultural barriers such as being reticent to question a doctor’s judgment and la
nguage differences. As mentioned earlier, many also lacked family support in pursuing autism services for their child. 

Moving forward to address cultural needs
Based on what we learned in the focus groups, we are embarking on our next steps to address the needs our focus groups identified in ways that will lead to earlier autism diagnosis and improved access to services.

This will include adapting a curriculum for Latino families to address three overarching needs: knowledge about autism, advocacy training and assistance navigating the service system.

Based on a curriculum called Developmental Milestones, we are working with local providers and parents to integrate these three aspects into a single educational program. This program will be used in our communities with the help of promotores.

Promotores are Latino community members trained to provide basic health education in the community. While most of their work entails educating families about health issues, they also provide guidance on accessing community healthcare resources.Promotores serve as liaisons between families and health professionals and social service organizations. In this role, they not only educate, they also advocate, mentor and serve as outreach workers, role models and translators.

Our team will work with parents, providers and promotores to make sure that the curriculum we develop is culturally appropriate and addresses the community’s needs.  We are excited to have the support of Autism Speaks as we move this forward and hope to share what we learn with our partner sites in the Autism Treatment Network. 

Based on what we learn from this program, we will also adapt the program for African American families using a similar model that involves community health workers.

Above words do not reflect any agency, candidate or committee.
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on What Can The State Of Minnesota Do With Four Million Dollars – Help Needy Autism Families

OK, so let’s think about this. The Minnesota House of Representatives voted (not by a landslide but a majority) to give money to the wealthier autism families to the tune of FOUR MILLIONS DOLLARS THIS COMING BUDGET YEAR AND YOU KNOW HOW HARD IT IS TAKE SOMETHING BACK ONCE YOU GIVE IT. This means four million dollars from health and human services budget every year for families who can afford autism therapy, whose children overwhelmingly get early autism services, get the majority of waiver funds and so much more. Come on – don’t they already have enough help.

Imagine if the state used that money to;

1. Fund autism research that could lead to a cause and cure for autism symptoms which would save millions because less children will need lifetime support as they do now.

2. Use for waivers for the thousands of children and adults on wait list for years for Disability Developmental waivers. I have seen some families on wait list for years, even over a decade.

3. Use that money to start a website and an autism guidebook for newly diagnosed children so that their parents know what to do from the gate.

4. Use that money to train law enforcement to find wandering children faster and safer.

5. To use that money to invest in better wandering device technology.

6. To use that money to train and educate thousands of MN autism families about autism and how to help their children.

7. Train more autism teachers, speech therapist, behavior therapist and occupational therapist.

8. Train and intentionally recruit minority autism therapist and professionals given there is NO minority owned autism therapy clinic and less than few minority autism mental health professionals.

9. Use that money to help families to assure their children is safe in their homes since many kids with autism live in homes not designed for them.

10. Use that money to help those in need first and be my brother’s keeper instead of giving to those with so much already.

Therefore, we ask the Senate Conferees for HF3172 To Reject the House Position of taking $4 Million from the have nots to give to the haves. It is cruel and un-American.

Clearly – the state of MN can use such money for much better and productive ways rather than buttering the buttered up. The Senate does not seem to want to do this so far and the governor did not put it in his budget. Nevertheless, the fat lady has not sung yet, which means anything can happen. It also means we especially in the low income and/or minority autism families must watch what the governor does. For example, even if the Senate agrees with the House (God I hope not), the Governor does NOT have to sign it. In other words, the governor can indicate or hint his wishes to the chairs and they usually follow him since he has the signature pen.

Remember when the house and senate passed an education reform bill that would have eliminated the last hired – first fired among other outdated policies, and Gov Dayton vetoed because the education union did not want it and he needs their support. You see, they all make political calculations to vote or sign anything. It is all about politics and this is an election year.

The only one who could care less and quite frankly has been against minority autism kids from the get go is Rep Huntley because he is retiring this year. Everyone else has to come back for votes and I would bet the Governor is the weakest politically given he won with less than 9000 votes last time and that is when we were sleeping politically. Now, our community and other minority communities have figured out 2 + 2 is four and if we vote for you then you address our issues – period.

Time will tell and we will learn from this. By the way, if we had a Somali or even a Black policy adviser in the Governor’s office – this would have been nipped from the gate. Hence, the need for us to ask and demand equal hiring policy at Dayton’s office. It does not exist now. Yes, I know he hired a Somali toddler couple of months ago, but he is in outreach dept and he does not understand policy from poop. In other words, we can’t and should not tolerate what happened to Siyad Ali with Sen Amy K who has more degrees than any of her staff, but after years and years is still a constituent outreach. We have smart and educated people and if they want our votes then they need to hire us equally and fairly in leadership positions – period.

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

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on Update on Autism & MN Senate – 2014 Session

Yesterday Thursday May 8th 2014, Sen Benson moved to amend the HHS policy omnibus and not eliminate the cost free, parent empowered autism task force and the following are the Senate floor votes. 40 YES for Autism families and 22 NO against autism families. 

Sen Hayden gave an eloquent speech on why our state needs an autism committee. I also like to thank Sen Senjem who is the God Father of autism in Minnesota. He started this before autism was a hot topic at the state capitol.

The votes were 40 YES and 22 NO in our favor. Drum roll please……….. The amendment passed and the motion prevailed. Yay! Don’t sing yet, because the whole bill now goes to Conference committee. The Senate Conferees are; Sen. Hayden, Sheran, Rosen, Lourey and Wiklund. 


Those who voted in the affirmative were: Supporting keeping the MN Autism Task Force & Supporting Minnesota Autism families. THANK YOU ALL VERY MUCH! 


Anderson (R)

Benson (R)

Bonoff (D)

Brown (R)

Carlson (D)

Chamberlain (R)

Dahms (R)

Dibble (D)

Dziedzic (D)

Eken (D)

Fischbach (D)

Franzen (D)

Gazelka (R)


Hall (R)

Hann (R)

Hayden (D)

Ingebrigtsen (R)

Kiffmeyer (R)

Koenen (D)

Limmer (R)

Lourey (D)

Miller (R)

Nelson (R)

Newman (R)

Nienow (R)

Ortman (R)

Osmek (R)

Pappas (D)

Pederson, J. (R)


Pratt (R)

Reinert (D)

Rosen (R)

Ruud (R)

Senjem (R)

Sparks (D)

Stumpf (D)

Thompson (R)

Tomassoni (D)

Weber (R)

Wiger (D)



Those who voted in the negative were: (Wanted to Eliminate MN Autism Task Force and Silence Minnesota Autism Families) Elections have consequences, so should votes. Who said it?

Gov Dayton said that.


Clausen (DFL)

Cohen (DFL and board member of Confederation Somali Community of MN which has the highest autism rate in Minnesota)

Dahle (DFL)

Eaton (DFL, Represents West Africans in Brooklyn Center area who also have high rate of autism)

Goodwin (DFL)

Hawj (DFL) Asian autism kids get less services in case you were confused.

Hoffman (DFL)

Jensen (DFL – voted for the wealthier autism families last session as well)

Johnson (DFL)

Kent (DFL)

Latz (DFL)

Marty (DFL – most disappointed at him)


Metzen (DFL, not surprised)

Petersen, B. (GOP)

Rest (DFL) heads the important tax committee which has zero color or diversity, not surprising.

Scalze (DFL)

Schmit (DFL)

Sheran (DFL)

Sieben (DFL)

Skoe (DFL)

Torres Ray (DFL, Hispanic Americans get less services as research states, yet no love from Torres Ray – why)

Wiklund (DFL)



There you have it. The votes as it was recorded and as they say the proof is in the pudding. As you can see, we have more support from MN DFLers in the Senate then we did in the House. We also have almost all GOP support in the Senate and majority GOP support in the House. Think about that for a minute because MN minorities and low income folks give their vote to DFLers, yet that support is not a two way street. 

In other words, if those that preach we care, blah blah and vote screw you, then we can use our votes and eliminate them. How about that for a change. Minnesota has a high autism rate, Somalis have the highest, Minn has a horrible racial health disparity including autism and these are the fair share preaching party. Come on now. We can’t be stupid forever. We must connect our votes at the ballot to their votes on the floor & in committees.


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


Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized