Monthly Archives: July 2014

AFSCME Union Cuts Ties With UNCF – Goodbye & Good Riddance

idilabdull | July 26th, 2014
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Alright, so – as we all heard the Koch brothers were kind enough to donate over $25 millions to the struggling UNCF (United College Negro Fund) because the current U.S Dept of Education Sec Duncan sort of ignored their needs. These universities teach and nurture African American college students in a friendly, welcoming and amazing environment.

I think it is critical that these universities exist and those with the big bucks donate when they can which is what Koch brothers did. I also think it is sad to bring silly politics into educating our young to prepare them for tomorrow. Nevertheless, the silly and over-rated (my little humble opinion) decided to end their small and not all that productive relationship because God forbid UNCF decides to survive and accept Koch’s donation.

A letter sent by the Union’s President stated the following;

Lee Saunders, president of the American Federation of State, County and Municipal Employees, penned a letter this week to UNCF President and CEO Michael Lomax informing him that he is ending the collaboration between the two groups on a joint scholarship program.

“Like many supporters of the UNCF, I was deeply troubled by your decision to accept $25 million from David and Charles Koch. But I assumed that in accepting those funds you were in no way supporting or lending the name of the UNCF to the political or social causes or substantive views of the Koch brothers,” writes Saunders. “So I was truly stunned to learn that less than two weeks later, you attended and spoke at the Koch brothers summit in California. This was a betrayal of everything the UNCF stands for.” With friends like that African Americans don’t need enemies.

“The response has been what we expected,” Lomax said in an interview last month of backlash aimed at UNCF. “The criticism has come but there’s also been strong affirmation, particularly within the African American community, that we should accept this gift.”

Following AFSCME’s decision, Lomax said that the union’s decision was disheartening but that it would not deter UNCF from its mission.

“UNCF has over 100,000 donors with a wide range of views, but they all have one thing in common: they believe in helping young students of color realize their dreams of a college education. For over 70 years we have never had a litmus test and we have asked all Americans to support our cause,” Lomax said in a statement.

Let’s think about this statement for a hot minute here – because UNCF accepts money from two American brothers who happen to believe a different political view called Republican makes the Union leader disappointed. Are you freaking kidding me. Where exactly is it written that only Democrats care about the education of African American students? excuse but – aren’t majority of the public schools they control in this country failing African American students? Oh yeah – they are. Yet, Blacks should just take marching orders and stay on the DFL plantation regardless of their failed education policies. Are you kidding me again, really. I mean the audacity and nerve of Mr. Saunders to not only think of such racist remarks but to actually say it publicly, loudly and proudly should speak volumes of the disconnect between DFLers and their failed education policies.

Imagine for a minute if UNCF took the same amount of donation from George Sorow and a conservative organization cut ties with UNCF. What do you think they would have been called. They would have been called racist, bias, bigots, and every other name in the book. I just can’t believe this is 2014 in America.

Here is my two cents to every DFLer who assumes all minorities will vote for them and believe they are the only fair minded Americans – come down of your high horse, don’t you dare think you have our votes guaranteed irrespective of your policies and ain’t nothing fair about your policies, because if they were then why are minority children failing in every district you control in this country from South Mpls to South Side Chicago to South Central LA?

Personally, I am glad UNCF accepted the donation and even more glad the Koch brothers were willing to help their fellow Americans get a better education.

Some light end of this education disparity for minority children nationwide: Nine students from California sued their state and won. They argued that because the state system of hiring and firing teachers was unfair since teachers kept their jobs not because they were good, but because selfish & arrogant unions fought for them that kept students from learning and getting a good free public education, thereby violating their constitution.

The other light in this tunnel is even Sec Duncan is coming around on education disparity gap which seems to be pissing off education unions, but really who cares if they are mad. Furthermore, previous Obama right hand man Robert Gibbs is joining the fight for children against ineffective teachers.

So, the tide is turning slowly but surely at least nationally.

Nevertheless, Gov Dayton is still in la la land in this area. Remember he vetoed a bill by the state legislature that would have fixed last hired/first fired teachers because Gov Dayton would rather protect and help his union friends instead of protecting and helping Minnesota students. Dayton is up for re-election this year and if you have a child in a public school and they are not learning at grade level. This is your chance to vote him out and elect someone who will truly put your children first and unions last. It should be our children first, not politicians wanting to keep their seats.

Related note: Askar is for school choice including charter schools and Noor is for protecting unions over children. Please make the right choice and vote for Askar. In addition, Johnson is for school choice as well whereby Dayton is not. Think about it as you vote this election year.

Thanks!

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

Idil – Somali Autism Mom & Minority Advocate

Category: My two cents - ok 1 1/2 cents

Abdirahman Adem – A huge loss for Somali Autism Families in Minnesota

idilabdull | July 26th, 2014
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This is probably the saddest post I have written and it has been a difficult couple of years for our community in Minnesota. As we all heard by now, our beloved Somali education advocate Abdirahman Adem passed away last weekend. I have been crying ever since I heard. I just can’t even imagine Minneapolis schools without Abdirahman.

I first met Abdirahman in one of their monthly meetings for Somali families in Minneapolis school district they would hold at Confederation Somali Community of Minnesota office inside Brian Coyle Center. This was years ago and Abdirahman from that day on has been in our corner. He would help every Somali autism parent regardless of which school district their child went to – as far away as Duluth or as close as St. Paul school district. He was always eager and helpful with all things education. Abdirahman was behind so many education workshops by MDE (Minn Dept of Education) Mpls school district, St. Paul school district and many more to support and educate Somali autism families.

Abdirahman was so knowledgeable about Somalis & our culture, yet so humble and always found a way to make every parent feel welcomed, respected and validated.

In his funeral, I saw parents that he helped years ago to parents he just helped couple of weeks ago. That shows how much he valued Somali parents and their needs. He always took our side over school administrators and teachers. I remember he would always say parents are our customers and we aim to please them. They are right and know their children best. He would say that to everyone – school board members to superintendents to the school principals to whoever.

My heart aches and my head hurts because without Abdirahman – nothing in Minneapolis school district will be the same. He loved education and cared for our families and their children. He was a member of every autism committee we asked, went to every autism meeting with me that I asked and defended all Somali autism families with no hesitation and no reservation against anyone.

Abdirahman has never said no to me for anything relating to autism even if he could not do it, he would get someone else to do whatever I was asking. I am heartbroken and saddened by his passing. I can’t think of anyone like Abdirahman in our community now who will defend and stand by Somali autism families. There really just isn’t anyone else with the same understanding, caring and compassionate yet so approachable. I am grateful and lucky to have known Abdirahman and will always remember and appreciate his support for Somali autism children and parents in Minnesota. He was a confidant and an adviser to me for so many years, I remember when I was invited to the White House in 2011 – Abdirahman and Hussein Samatar (who also passed away last year) were the first people I called to tell them my surreal experience.

I miss both of them more than words can ever express and I truly feel empty without their consistent advice and support. They kept me grounded yet appreciated. They would always tell me if I were right or wrong about any issue in a way that made perfect sense.

I pray for Abdirahman’s family and friends and I pray he rests in peace. (Ilaahay ha u naxariisto Abdirahman, anagana samir iyo iimaan ha inaga siiyo – AAMIIN).

Idil

 

Category: Uncategorized

Centers For Medicare and Medicaid Services Addresses Autism Intervention Coverage @ IACC Meeting

idilabdull | July 13th, 2014
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Alright, so if you understand autism policy in relation to autism therapy then you know there are over 35 states with early intervention autism therapy coverage for higher income autism children – thanks to Autism Speaks who solely advocates for wealthier autism families that have private insurance coverage. Now, I don’t want to get emails from pissed off wealthier autism parents asking what I have against private insurance autism families. I have nothing but respect and admiration for those families. My concern has always been where is the equal intervention for low income autism families who we know are disproportionately minorities.

Well – I have zero concern no more due to recent announcement by Ms. Mann who heads up Centers for Medicare and Medicaid Services (CMS) children coverage including autism. I am not even sure where to start here because there are so many angles and process that took place to get to this amazing place with CMS.

Let’s see – maybe we can start when so many state legislatures started approving coverage for only private insurance autism families, some of the low income families in few of those states started seeing the double standard and sued their state Medicaid agency. Florida and Washington autism families that have Medicaid sued and they both won whereby a Judge ordered those state Medicaid agencies to cover similar autism therapy as private insurance. So that therapy coverage is not seperate and un-equal. As a result, state of WA sent a request to CMS asking to add early autism therapy coverage under their state Medicaid plan of Early, Periodic, Screening, Diagnoses and Treatment (EPSDT). This meant every child from birth to 21 who had a disability or a medical condition including autism would get early screening, diagnostic and treatment for their condition without the state having to apply the ever cumbersome waivers.

Then the good news came when couple of weeks ago – CMS approved Washington’s plan. YAY!

In parallel, many advocates including me have asked CMS why should families sue their state Medicaid agency to get the necessary medical treatments their children needed. In other words, if CMS is under the umbrella of HHS – same as CDC who says learn the signs so you can act early then NIH says act early and get early intervention. CMS under that same umbrella could not say to the same families – so sad/too bad we don’t cover early intervention. I have asked high and low all the way to CMS administrator Ms. Tavenner and Ms. Mann and God knows I have asked (ok – harassed) so many other CMS folks. The goal was autism parents who are already stressed and tired to not have to collect data, be denied services then find a lawyer, then sue their state, Come on. That was simply too much and too cruel.

This took a really long time and I have heard everything in the book of well – we can’t just approve ABA because ABA was created after EPSDT rules were written by Congress, to no CMS can’t cover ABA, Floortime, etc because of yada yada and more yada, to parents must ask their state Medicaid agency, to parents must ask their local legislators to you name it. Well, needless to say – I never gave up and wanted equality for low income autism families along with countless other autism advocates minus Autism Speaks and we finally prevailed.

On the last full committee IACC meeting, Melissa Harris (Love her!) From CMS gave us the best news ever that I think I got goose-bumps. Melissa said states can now add autism therapy coverage of both behavior and developmental therapy to their state plan under EPSDT. OMG – you read that right. That is like getting a gift from Nelson Mandela and Mother Teresa in one package of kindness and equality. What a way to end this cycle of IACC. I was sooooo happy that I wanted to hug everyone from CMS that day. I think what CMS did will definitely decrease autism racial disparity over time as more low income children get access to hassle free autism intervention and get diagnosed early which will improve their best outcome.

I am personally very grateful to so many people at CMS that God knows I have been on their case relentlessly and persistently, especially Ms. Mann, Verlon, Courtenay, Tavenner, Khalid, Keri & Ellen, but most of all John who no matter my pissed off attitude stayed on task and concentrated on what I said, rather than how I said it. Thank you John for tolerating me for so many years starting with your first day at IACC which I think my words shocked you to say the least. I think you are awesome and I along with hundreds of thousands of families across this country are very grateful for your support and help. In borrowing the words of Neil Armstrong – this was a giant leap for autism families across this country from Alabama to Alaska, from Washington to Wyoming – the grass is now green and intervention is available for ALL autistic kids.

I hope every state changes their state plan and adds autism coverage under their EPSDT which will cover children from birth to 21 in screening, diagnosing and intervention for both behavior and developmental therapy. CMS even created a new email (AutismServicesQuestions@cms.hhs.gov) for state Medicaid agencies that have questions or need technical assistance – how awesome is that.

Here is the full letter from CMS explaining in detail how autism therapy can now be covered for all fifty states.

July 25, 2014 – My good friend and fellow IACC member whose opinion I value and respect just posted a blog on this very subject of autism, Medicaid and IACC. Thanks Matt! To read this post, click HERE.

Thanks!

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

Idil – Somali Autism Mom & Minority Advocate

Category: Autism Policy

Last IACC Full Committee Meeting On July 8th, 2014 Ends Well

idilabdull | July 12th, 2014
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Alright, so Tuesday July 8th, 2014 was the last day for this cycle of IACC (Interagency Autism Coordinating Committee) and I thought it ended very well. Here is my view and thoughts on this incredible journey I took.

After the usual introductions & Science update by Dr. Insel, our chair and Director of NIMH (National Institute of Mental Health) – we heard several autism researchers that quite frankly are the guru of autism research in this country. I was eager and very pleased with CMS’s presentation on autism therapy coverage which now can be done through EPSDT and states can add to their state plan. I think this was worth every emotional and highly intense conversations I have had with CMS for the past couple of years.

Here is the full meeting agenda:

IACC FULL COMMITTEE MEETING AGENDA

Tuesday, July 8, 2014
9:00 a.m. to 5:15 p.m. Eastern

The Neuroscience Center
6001 Executive Boulevard, Conference Rooms C and D
Rockville, Maryland 20852
Map and Directions This link exits the Interagency Autism Coordinating Committee Web site

On-site registration is from 8:30 a.m. to 9:00 a.m. Eastern for members of the public attending in person, and the meeting will also be available to the public by live videocast and conference call. The materials for the meeting can be found here.

Time Event
  9:00 a.m. Welcome, Introductions, Roll Call and Approval of MinutesThomas Insel, M.D.
Director, National Institute of Mental Health (NIMH)
Chair, IACCSusan Daniels, Ph.D.
Director, Office of Autism Research Coordination (OARC), NIMH
Executive Secretary, IACC
  9:15 OARC/IACC UpdateSusan Daniels, Ph.D.
Director, Office of Autism Research Coordination (OARC), NIMH
Executive Secretary, IACCThomas Insel, M.D.
Director, NIMH
Chair, IACC
  9:30 Science UpdateThomas Insel, M.D.
Director, NIMH
Chair, IACC
  9:45 Neuroimaging the Full Spectrum of AutismDavid G. Amaral, Ph.D.
Distinguished Professor, Department of Psychiatry and Neuroscience
Chair, Beneto Foundation
Director of Research, UC Davis MIND Institute
University of California, Davis
Director, Autism BrainNet
 10:15 Autism BrainNet David G. Amaral, Ph.D.
Distinguished Professor, Department of Psychiatry and Neuroscience
Chair, Beneto Foundation
Director of Research, UC Davis MIND Institute
University of California, Davis
Director, Autism BrainNetAlison Singer, M.B.A.
President
Autism Science Foundation
Member, IACC
 10:45 Break
 11:00 NIH NeuroBioBankMichelle P. Freund, Ph.D.
Chief
Neurotechnology and Molecular Biotechnology Programs
Office of Technology Development and Coordination
National Institute of Mental Health (NIMH)
 11:20 Briefing on State of the StatesSonya Bowen, M.S.W.
Health Insurance Specialist
Disabled and Elderly Health Programs Group
Division of Long-Term Services and Supports
Center for Medicaid and CHIP Services
Centers for Medicare & Medicaid Services
 11:50 Lunch
   1:00 p.m. Public Comment
   1:30 Discussion of Public Comment
   1:45 Update on the South Carolina Children’s Educational Surveillance Study (SUCCESS)Laura Carpenter, Ph.D., BCBA
Associate Professor of Pediatrics
Division of Developmental and Behavioral Pediatrics
Department of Pediatrics
Medical University of South Carolina
   2:15 Break
   2:30 Panel on Early Developmental Trajectories in Autism Spectrum Disorder (ASD)2:30 Audrey Thurm, Ph.D.
Staff Scientist
Pediatrics and Developmental Neuroscience Branch
National Institute of Mental Health (NIMH)2:50

Rebecca Landa, Ph.D., CCC-SLP
Founding Director, Center for Autism and Related
Disorders, Kennedy Krieger Institute
Professor, Department of Psychiatry and Behavioral
Sciences, School of Medicine
Johns Hopkins University

3:10

Catherine Lord, Ph.D.
Director
Center for Autism and the Developing Brain
DeWitt Wallace Senior Scholar
Professor of Psychology in Psychiatry and Pediatrics
Weill Cornell Medical College/NewYork-Presbyterian Hospital

3:30 – Discussion
   4:00 Round Robin 4:00 – An Insider’s Perspective on Autism

Noah Britton, M.A. 
Self-Advocate
Member, IACC4:15 – Teen Transition

Sally Burton-Hoyle, Ed.D.
Associate Professor
Eastern Michigan University
Department of Special Education
College of Education
Member, IACC4:30 – Nevada’s Autism Treatment Assistance Program (ATAP)

Jan Crandy
Case Manager
Nevada’s State Autism Treatment Assistance Program
Member, IACC

4:45 – Medicaid Coverage for ASD Services

Melissa Harris
Director
Division of Benefits and Coverage
Disabled and Elderly Health Program Group
Centers for Medicare and Medicaid Services

5:00 – Home and Community Based Services (HCBS) Waiver Programs

John O’Brien, M.A.
Senior Policy Advisor
Disabled and Elderly Health Programs Group
Centers for Medicare and Medicaid Services
U.S. Department of Health and Services
Member, IACC
   5:15 Adjournment

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

Thanks!

Idil – Somali Autism Mom & Minority Advocate

Category: My two cents, Uncategorized

Idil’s Blog

idilabdull | July 12th, 2014
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My new blog location has changed to this site host. It is taking me a while to digest this new process.

Thanks for your patience!

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

IACC Full Committee Meeting July 8, 2014 – Agenda

idilabdull | July 6th, 2014
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This will likely be the last full IACC meeting for the current Autism Act authorized by Congress in 2011. The next cycle should start after Sept 30, 2014 provided it passes out of the Senate floor and signed by President Obama. For below agenda, I am particularly interested in CMS’s state of the states status on autism treatment and services for low income autism families on Medicaid and how it compares to private insurance mandates of over 36 states. 

State of Washington low income autism families sued the state Medicaid agency for not providing autism early intervention coverage and won was recently allowed to provide autism therapy through their state plan by CMS. I think that is great and I would like to see other states follow same route, not necessarily through lawsuits, but a CMS that is open to covering autism therapy for all low income autism children nationwide. Otherwise what is the point of learning the signs early – if you can’t act because Medicaid refuses to cover research based intervention. 

Tuesday, July 8, 2014
9:00 a.m. to 5:00 p.m. Eastern

The Neuroscience Center 
6001 Executive Boulevard, Conference Rooms C and D 
Rockville, Maryland 20852 
Map and Directions This link exits the Interagency Autism Coordinating Committee Web site

On-site registration is from 8:30 a.m. to 9:00 a.m. Eastern for members of the public attending in person, and the meeting will also be available to the public by live videocast and conference call.

Time Event
  9:00 a.m. Welcome, Introductions, Roll Call and Approval of Minutes

Thomas Insel, M.D.
Director, National Institute of Mental Health (NIMH)
Chair, IACC

Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination (OARC), NIMH
Executive Secretary, IACC
  9:15 Science Update

Thomas Insel, M.D.
Director, NIMH
Chair, IACC
  9:30 OARC/IACC Update

Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination (OARC), NIMH
Executive Secretary, IACC
  9:45 Neuroimaging the Full Spectrum of Autism

David G. Amaral, Ph.D.
Distinguished Professor, Department of Psychiatry and Neuroscience
Chair, Beneto Foundation
Director of Research, UC Davis MIND Institute
University of California, Davis
Director, Autism BrainNet
 10:15 Autism BrainNet 

David G. Amaral, Ph.D.
Distinguished Professor, Department of Psychiatry and Neuroscience
Chair, Beneto Foundation
Director of Research, UC Davis MIND Institute
University of California, Davis
Director, Autism BrainNet

Alison Singer, M.B.A. 
President
Autism Science Foundation
Member, IACC
 10:45 Break
 11:00 NIH NeuroBioBank

Michelle P. Freund, Ph.D.
Chief
Neurotechnology and Molecular Biotechnology Programs
Office of Technology Development and Coordination
National Institute of Mental Health (NIMH)
 11:20 Briefing on State of the States

Sonya Bowen, M.S.W.
Health Insurance Specialist
Disabled and Elderly Health Programs Group
Division of Long-Term Services and Supports
Center for Medicaid and CHIP Services
Centers for Medicare & Medicaid Services
 11:50 Lunch
   1:00 p.m. Public Comment
   1:30 Discussion of Public Comment
   1:45 Update on the South Carolina Children’s Educational Surveillance Study (SUCCESS)

Laura Carpenter, Ph.D., BCBA
Associate Professor of Pediatrics
Division of Developmental and Behavioral Pediatrics
Department of Pediatrics
Medical University of South Carolina
   2:15 Break
   2:30 Panel on Autism Trajectories

2:30 

Audrey Thurm, Ph.D.
Staff Scientist 
Pediatrics and Developmental Neuroscience Branch
National Institute of Mental Health (NIMH) 

2:50

Catherine Lord, Ph.D.
Director
Center for Autism and the Developing Brain
DeWitt Wallace Senior Scholar
Professor of Psychology in Psychiatry and Pediatrics
Weill Cornell Medical College/NewYork-Presbyterian Hospital

3:10

Rebecca Landa, Ph.D., CCC-SLP
Fo
unding Director, Center for Autism and Related 
Disorders, Kennedy Krieger Institute
Professor, Department of Psychiatry and Behavioral 
Sciences, School of Medicine
Johns Hopkins University 

3:30 – Discussion
   4:00 Round Robin 

4:00 – An Insider’s Perspective on Autism

Noah Britton, M.A. 
Self-Advocate
Member, IACC

4:15 – Teen Transition

Sally Burton-Hoyle, Ed.D.
Associate Professor
Eastern Michigan University 
Department of Special Education
College of Education
Member, IACC 

4:30 – Nevada’s Autism Treatment Assistance Program (ATAP)

Jan Crandy
Case Manager
Nevada’s State Autism Treatment Assistance Program
Member, IACC

4:45 – Home and Community Based Services (HCBS) Waiver Programs

John O’Brien, M.A.
Senior Policy Advisor
Disabled and Elderly Health Programs Group
Center for Medicare and Medicaid Services
U.S. Department of Health and Services
Member, IACC
   5:00 Adjournment
As usual and a member of IACC – above words do not reflect any committee, agency or candidate.
Thanks!
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Autism CARES Act Hits Hiccups in Congress

| July 5th, 2014
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Alright, so if you follow national autism news then you probably heard this. I think it is sad that while millions of Autism families depend on this act – few have decided to just hijack it without offering alternatives. 

First, I think the amended version of HR 4631 which passed necessary committees and passed the house floor has everything possible the autism community needs. It increased the IACC public membership to include people from the majority and minority leadership in Congress, it includes a specific person designated for autism within HHS, it has language specific for adults with autism, it has more comprehensive language for education, work, housing, safety and treatments. It even has language stating awareness, training and treatment should be culturally competent. I mean what the heck more do we need – really? Well – I would not mind adding more research on why autism racial disparity is prevalent and solutions on fixing that, plus cost of autism racial disparity. Imagine if Sen Franken actually spoke for his Somali voters and added an amendment asking for that. Don’t hold your breath waiting for it though. It ain’t going to happen which is why we need to vote Franken out.
HR 4631 needs a Senate version which is S2449 and is very similar, and passed through HELP committee – but on its way to the Senate floor was derailed by few autism groups and parents. Now, I know autism is complicated, complex and confusing and as parents we are tired and frustrated beyond words can express, but as an IACC public member – I try to see issues from other’s perspective. For example, some are always saying the last autism act did not help and CDC did not prevent one single autism case. Let’s think through this for a minute – the rate now is 1 in 68 nationally. Maybe CDC’s Learn the signs and act early assured some kids to get diagnosed early and get early intervention whereby they did not develop full blown autism symptoms. Couldn’t one then argue CDC has prevented severe autism cases. Because if they didn’t would the rate be higher? 
It is easy to blame CDC, but I am not sure what else they can do. They count numbers and tell us what they are. They are getting much better with their awareness campaign and they are even realizing they need more diverse staff/leadership in their autism area. What more do we want from them. Really I am asking because it is easier to blame a government agency without real questions.
And in terms of NIH doing research. Let’s think through this rationally because if you look at other chronic medical conditions such as diabetes, aids or cancer which all have much more funding than autism, there is still no known prevention or cure that is 100% correct. And, these conditions have more research under their belt in comparison to autism which as Dr. Insel always says is infantile stage of research. For autism – we know there is a genetic and an environmental component, but if we confuse the already confused and short term memory congress members by bombarding them with calls to not approve what little we have – then how can autism research move forward. 
I understand again the level of frustration and worry that comes with our kiddos with more severe autism, but we can’t keep biting the hand that is helping us without any specific ideas. For example, what exactly are these groups looking to accomplish other than eliminate the whole autism research and services funding? I ask them in a gentle and friendly manner to send specific questions and concerns to the Senate authors rather than just telling their readers to call Congress asking to not vote for the whole bill because that does not help anyone including the families they are fighting for. 
Anyway, I hope this bill gets passed out of the Senate floor and goes to the President for signature before the current Act expires Sept 30, 2014, then we have nothing. Is that what we want?
Below is some of the language of the current version of this legislation: I have highlighted issues that are important to me. 
   2015     2016     2017     2018     2019   2015-2019
—————————————————————————————————————-
                                  CHANGES IN SPENDING SUBJECT TO APPROPRIATION

CDC:
    Authorization Level……………………………       22       22       22       22       22       110
    Estimated Outlays……………………………..       10       20       20       20       20        90
HRSA:
  &
nbsp; Authorization Level……………………………       48       48       48       48       48       240
    Estimated Outlays……………………………..       25       45       45       50       50       215
NIH:
    Authorization Level……………………………      190      190      190      190      190       950
    Estimated Outlays……………………………..       50      150      180      185      190       755
    Total Changes:
        Authorization Level………………………..      260      260      260      260      260     1,300
        Estimated Outlays………………………….       85      215      245      255      260    1,060

The CDC currently administers several surveillance and
research programs directed at determining the prevalence of
autism and the risk factors for developing autism, as well as
raising awareness of the signs of autism for families, health
care providers, and childcare educators. Congress
appropriated approximately $22 million for those activities in
fiscal year 2014. The bill would authorize the appropriation of
$22 million annually over the 2015-2019 period for such
programs. CBO estimates that implementing those provisions
would cost $90 million over the 2015-2019 period.
    HRSA currently operates several programs to train health
care providers in the delivery of care to children with autism
and other developmental disabilities. Congress appropriated
approximately $47 million for those activities in fiscal year
2014. The legislation would authorize the appropriation of $48
million for each of fiscal years 2015 through 2019 for HRSA to
continue such activities. CBO estimates that implementing those
provisions would cost $215 million over the 2015-2019 period.
    H.R. 4631 also would reauthorize programs and activities
carried out by NIH to advance autism research and treatment
including the Autism Centers of Excellence program. The
Congress appropriated $190 million for those activities in
fiscal year 2014. The bill would authorize the appropriation of
$190 million for each of fiscal years 2015 through 2019 for NIH
to continue such activities. CBO estimates that implementing
those provisions would cost $755 million over the 2015-2019
period.

   Section
2 would require the Secretary to appoint an
existing official to oversee the activities related to autism
including the strategic plan and ensure the elimination of
unnecessary duplication in activities.

Section 4. Autism intervention

    Section 4 would require that activities related to autism
early education, early detection, and intervention be
culturally competent. The bill also would provide for the
identification of evidence-based practices and the training of
respite caregivers.

Section 5. Interagency Autism Coordinating Committee

    Section 5 would require the IACC, as part of its
responsibilities, to include school and community-based
interventions in the summary of advances; monitor research,
services, and support activities across Federal departments and
agencies; and include a plan for the conduct of and support for
ASD research and services and supports for individuals with ASD
and their families in the strategic plan.

SEC. 399BB. AUTISM EDUCATION, EARLY DETECTION, AND INTERVENTION.

  (a) * * *
  (b) In General.–The Secretary shall, subject to the
availability of appropriations, establish and evaluate
activities to–
          (1) provide culturally competent information and
       education on autism spectrum disorder and other
       developmental disabilities to increase public awareness
       of developmental milestones;


  (f) Intervention.–The Secretary shall promote research,
through [grants or contracts, to determine the evidence-based
practices for interventions for individuals with] grants or
contracts, which may include grants or contracts to research
centers or networks, to determine the evidence-based practices
for interventions to improve the physical and behavioral health
of individuals with autism spectrum disorder or other
developmental disabilities, develop guidelines for those
interventions, and disseminate information related to such
research and guidelines.

(6) submit to Congress and the President–
                  (A) an annual update on the summary of
               advances described in paragraph (2); and
                  ( an annual update to the strategic plan
               described in paragraph (5), including any
               progress made in achieving the goals outlined
               in such strategic plan

(b) Report on Young Adults and Transitioning Youth.–
          (1) In general.–Not later than 2 years after the
       date of enactment of the Autism CARES Act of 2014, the
       Secretary, in coordination with the Secretary of
       Education and in collaboration with the Secretary of
       Transportation, the Secretary of Labor, the Secretary
       of Housing and Urban Development, and the Attorney
       General, shall prepare and submit to the Committee on
       Health, Education, Labor, and Pensions of the Senate
       and the Committee on Energy and Commerce of the House
       of Representatives, a report concerning young adults
       with autism spectrum disorder and the challenges
       related to the transition from existing school-based
       services to those services available during adulthood.
          (2) Contents.–The report submitted under paragraph
       (1) shall contain–
                  (A) demographic characteristics of youth
               transitioning from school-based to community-
                based supports;
                  ( an overview of policies and programs
               relevant to young adults with autism spectrum
               disorder relating to post-secondary school
               transitional services, including an
               identification of existing Federal laws,
               regulations, policies, research, and programs;

(D) comprehensive approaches to transitioning
               from existing school-based services to those
               services available during adulthood,
               including–
                          (i) services that increase access to,
                       and improve integration and completion
                       of, post-secondary education, peer
                       support, vocational training (as
                       defined in section 103 of the
                       Rehabilitation Act of 1973 (29 U.S.C.
                       723)), rehabilitation, self-advocacy
                       skills, and competitive, integrated
                       employment;
                          (ii) community-based behavioral
                       supports and interventions;
                          (iii) community-based integrated
                       residential services, housing, and
                       transportation;
                          (iv) nutrition, health and wellness,
                       recreational, and social activities;
                          (v) personal safety services for
                       individuals with autism spectrum
                       disorder related to public safety
                       agencies or the criminal justice
                       system

If
you want to read the whole bill click here.
Above words do not reflect any committee, agency or candidate.
Thanks!
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Dear Minneapolis District 60B – Choose Abdimalik Askar Over Mohamud Noor – Vote For Better Policy Not Tribe

idilabdull | July 4th, 2014
Comments Off on Dear Minneapolis District 60B – Choose Abdimalik Askar Over Mohamud Noor – Vote For Better Policy Not Tribe

Alright, so if you follow local politics then you heard early voting for Minnesota primary started last week. And, hundreds of Somalis showed up at Mpls city hall to cast their votes for Kahn – current state representative, Noor the hopeful or Askar – the real deal who is running as the first Somali republican in Minnesota history. Askar often gets less attention from MN liberal media and Somalis who by mistake assume MN DFLers are better for them.

As research after research has told us, this district has some of the highest education gap in the state and the country, some of the worst health disparity for women and children, twice higher Black unemployment rate as Caucasians and even a huge gap in home-ownership. Therefore, those that live in this district must ask themselves;

1. Why are our kids failing in schools – for Somalis graduation rate is less than 50%?

2. Why are our men sitting at Fadhi ku dirir and not employed?

3. Why are women having more health problems?

4. Why do we have the highest autism rate in the state for our children 1 in 32 Somalis in this district has autism while nationwide the rate is 1 in 68, That is heartbreaking?

5. Why so many city contracts are never awarded to our businesses, not even 1%?

6. Why is it so hard in city hall and state capitol to start a minority owned business?

7. Why is this district never part of the state appropriations?

8. Why is there not a fence in dangerous playgrounds at Cedar/Riverside?

9. Why are our young/youth wandering the streets instead of being in school, work, and after school programs to enrich their future?

10. Why do we keep choosing the same politicians who have failed our district, our community and our families for years, decades and generations?

Ask yourself why and vote differently.

You see voters in district 60B are just as Americans and as Minnesotans as any other district. So why are district 60B voters at the bottom of every statistic from education to health?

Well – if you answered current representative Rep Kahn is out of touch, then you are right. I think Kahn has stayed too long and lost the ability to feel and see what district 60B constituents need. 40 years is way too long for any politician. Sadly, Kahn does not want to leave and must be voted out.

There are two other choices – Mohamud Noor or Abdi Askar. Let’s examine them from my little autism views.

As I learn and get to know both of these men. My choice is very clear, Askar is the one with different and better vision. Mohamud Noor has been around the block and has held many positions from the director of CSCM which has not improved under his leadership. In fact, the victims of last new year’s day fire are still homeless and Noor is accused of using those funds for his campaign by some Somalis in district 60B. Noor is also a current Mpls school board member which he rarely devotes any time to it, not like Hussein Samatar did. In fact, there isn’t one single good thing he pushed as MPS board member to help failing Somali kids in Mpls schools. Why did he even run for that position if he was not interested in making a difference. In Addition, Noor has been a member of Council of Black Minnesotans which again there is not one single significant item he pushed to better the lives of Black Minnesotans. Furthermore, he just moved to district 60B just to run for office rather than live there and really understand the needs of the people, unlike Warsame who actually lived there for years and knew the people.

Tribal Racism is just as bad as color racism:

Now it seems Cedar voters just want someone from their tribe to win, rather than someone with better policies and ideas. Voting for someone because of their tribe is as racism as voting for someone because of their color or gender. If Somalis are saying – they want fair and leveled playing field in Minnesota then we must practice those words and vote based on the content of their character, not their tribe.

Noor often has lots of good ideas, but they never transfer to fruits, and seeds are just seeds if they are not grown. Plus, as I learned recently – Noor will never stand up to anyone. Noor will not stand for Somali autism families even when Ka Joog toddlers are out of line. In other words, what is the use of good ideas if he never executes them.  Based in my little humble opinion, MN DFLers at state capitol will have him for lunch by breakfast. Noor will even go as low as to defend Gov Dayton & Sen Franken’s lack of real policies addressing Somalis and other minorities. There is not one single le
gislation from Dayton or Franken that uplifted Somali community and they have been in office for the last 4 to 6 years. Yet, Noor thinks we should still vote for them. Noor lacks a spine, a backbone & has zero real solutions for our increasing gaps.

For example, preaching universal early childhood is just a statement from MN DFLers because research states by the fourth grade minority children still fall behind which is why there is a huge gap between White and Black kids graduation rate in Minnesota. So, you see that is not a Noor idea, just a washed up and useless MN DFL promises that have failed before. Fighting for a minimum wage of $9.00 – are you kidding me. That is the best Noor can do. Again that is just agreeing with MN DFLers who have created this horrible employment gap in the first place. Besides the better idea would be ensuring our children learn and graduate from school into trade school or college so they can make their dreams come true, not get stuck at a $9.00 an hour job. Ladies and Gentlemen of Cedar and district 60B, Noor promises a lot, delivers a little and as the saying goes – you can’t teach an old dog new tricks. He ain’t going to change at the state capitol. He won’t deliver much there either.

On the other hand, Abdi Askar is not a MN DFLer, he is a MNGOP. I know what – aren’t all Blacks and minorities suppose to stay in MN DFL plantation. Well – based on their never ending disparities – we must change. Let’s explain what Askar will do if elected.

1. He will change the education system, so if your child is not graduating or learning at grade level at his/her current school district, Askar wants you (the parent) to have a choice to take your child to a private school of your choice by using a voucher from the state. In other words, parents don’t have to cry day in & day out because their kids are going to failing school, getting suspended, or expelled by over-rated and under delivering schools. He supports school choice and school vouchers. Many Somalis already take their kids to charter schools and Askar will enhance choices because we as parents know what is best for our children, right?

2. Askar will protect your family and religion values and will never tell you one thing and vote for another that undermines your core family values so that we can live in America as Americans who keep their culture and religion, not sell it to the highest bidder.

3. Askar will never tell you one thing and do the opposite, like Noor. Askar means what he says and says what he means. In other words, he will vote for your needs and values not just march to orders.

4. Askar will fight and introduce autism legislations that will find out why autism is higher in Somali children in which district 60B has the highest in Minnesota. Noor just gives us empty & useless words.

5. Askar will write legislations to assure adequate funding is allocated for district 60B youth so that they don’t become desperate and stay on the right path. He will work with higher education programs to start collaboration with our young to stay in school.

6. Askar will make sure Minnesota department of health stops preaching equity words and starts equity actions by writing bills to assure diverse policies at our state health department which has failed minority health under Dayton administration.

7. Askar will make sure Minnesota department of education and the legislators work together to intentionally recruit diverse Somali teachers including for autism in which there are zero right now under Dayton administration. (you know that Dayton that Noor thinks is doing good – oh please, can he come out for air and stop brown-nosing).

8. Askar will make sure Minnesota department of employment and economics policies and staff reflect our state’s changing demographics. For instance, there is zero Black, Brown, or minority in a leadership position at DEED. You know the department in charge of employment and economics that Noor thinks is doing well under Dayton administration. In other words, if they don’t look like you – they can’t really understand your concerns. Can a man understand the pain/joy of giving birth physically?

9. Askar will write policies to enhance Somalis from this district to become police officers, state troopers, captains, sheriffs and part of the Minnesota department of public safety, so that we are part of the solutions rather than just complaining from outside. Noor has zero ideas in this area and just kisses butt.

10. Askar will listen then make a decision based on reality and need of his voter’s concerns rather than march to orders from others. For example, Noor supports unequal autism services as indicated by a bill Sen Cohen (who chairs MN Senate Finance Committee and is responsible for the hundreds of millions of dollars going in/out – yet has allocated zero, zilch and nada for CSCM) co-authored HF 2700 which means low income autism families will have less inferior autism therapies than high income private insurance autism families. Noor refused to address any autism related issues, yet this medical condition is affecting one in every 32 Somali family in Cedar. If he can ignore your children’s health – do you really think he will care about anything else. Come on folks – open your eyes and stop with this tribal politics and emotional rollercoaster voting.

You see – the choice is very clear. Askar will lead from front and Noor will lead from behind and it will be politics as usual. Make the right choice and vote for Abdi Askar pl
ease. You, your children and your community will all be better for it.

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

Thanks!

Idil – Somali Autism Mom & Minority Advocate

Category: My two cents, Uncategorized

Disney Sued For Possible Violation Of Americans With Disabilities Act (ADA)

idilabdull | July 3rd, 2014
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Alright, so who does not love Disney. No one right with all the fun rides and themes. Unfortunately, for children with special needs in particular autism – Disney lines can be long and difficult for autistic children to tolerate including my son. Sadly, some whose children are healthy decided to ruin for all of us. More sadly, Disney decided to punish those with a disability rather than come up with a better plan that assured those in need of their Guest Assistance Card would only be able to get it. 

Instead they said – we will give your child a GAC and tell you to come back from one hour to three hours or more depending on the wait for that particular ride. Now, let’s think about this. What do we know about autism. If these kids could ask for something then wait for hours and not have a meltdown or an all out behavior, they would not be what? That is right …. autistic or have the core symptoms of autism. Can you imagine telling your autistic child who asked for a specific ride – let’s wait for couple of hours and we will be back for it. Americans With Disabilities Act clearly states public and private entities must make reasonable accommodations for people with disabilities based on their disability. And, if an autistic person’s disability is the inability to wait for hours then Disney clearly violated that Federal law. Have you even seen a lot of autistic children waiting in line at the grocery store peacefully. 
Personally, I called and wrote a previous post on this last year when Disney first announced this. When I spoke with their representative, she seemed clueless about autism or disability in general. I hoped other parents would do something about it which they did. Many autism families demonstrated in Disney parks and now some autism families are suing Disney. I hope Disney changes their new policy and even asks parents to bring a medical ID card indicating that child’s diagnoses and their disabilities to assure those that need the services get it.
Above my son at Disney before this new policy – no way in hell would he have waited for two hours and come back without a meltdown. Are you kidding me – I don’t even dream of those days.
Below is how Disability Scoop reported this lawsuit.

Disney Sued Over Disability Access Policy

By 

April 8, 2014Text Size  A  A

The mothers of 16 kids and young adults with developmental disabilities are suing Disney alleging that the company is failing to accommodate their children who cannot tolerate long wait times for theme-park rides like

The mothers of 16 kids and young adults with developmental disabilities are suing Disney alleging that the company is failing to accommodate their children who cannot tolerate long wait times for theme-park rides like “It’s a Small World.” (Christopher Reynolds/Los Angeles Times/MCT)

Disney is facing allegations of discrimination, with a lawsuit charging that modifications to the company’s policy for accommodating people with disabilities at its theme parks violate the Americans with Disabilities Act.

The lawsuit filed last week by mothers of 16 kids and young adults with developmental disabilities from across the nation accuses Walt Disney
Parks and Resorts of failing to accommodate their children’s special needs and of actively dissuading their presence at the company’s theme parks.

The move comes after Disney made sweeping changes to its policy for accommodating park visitors with disabilities last fall. For years, Disney had offered individuals with special needs a pass that often allowed them and their guests to skip to the front of long lines for park attractions.

Now, however, visitors to Walt Disney World and Disneyland can obtain a Disability Access Service Card which allows them to schedule a return time for rides based on current wait times. The system prevents those with disabilities from having to wait in line, but only allows visitors to schedule one attraction at a time.

Disney said the changes — which took effect in October — came after its existing system was “abused and exploited.” In their suit, however, the families allege that there was no abuse, but rather that the company wished to “cleanse its parks of what Disney views as the anti-Magic of such persons’ stimming, tics and meltdowns.”

The 180-page complaint filed in the U.S. District Court for the Central District of California details long waits and unhelpful interactions with employees at Disney parks. Moreover, the suit alleges that Disney won’t discuss accommodations with families until they have invested significant sums of money to arrive at a park.

In the suit, a mother known as M.B. alleges that she waited in line for an hour and a half to receive a Disability Access Card for her 6-year-old with autism who is referred to in court documents as A.B. Even though she offered park officials medical documentation about her child’s inability to tolerate waits, the mother says she was given no choice but to schedule a return time at “It’s a Small World” which A.B. wanted to ride repeatedly. After riding twice, A.B. faced another hour-and-fifteen-minute wait and entered a “full-fledged meltdown,” the lawsuit alleges.

In a separate case, the suit indicates that a mother known as L.C. tried to take her 7-year-old with autism, referred to as J.C., to Disney World several times since the new policy took effect. L.C. said her child has had multiple meltdowns after learning of wait times to ride “Peter Pan” and “Winnie the Pooh,” with J.C. falling to the ground or jumping up and down with arms spinning around. As a result, L.C. is no longer taking her child to Disney parks and does not plan to renew the family’s annual passes.

“Until recently, parents of developmentally disabled children universally adored Disney, because of the way Disney caringly accommodated their children,” said attorney Andy Dogali who is representing the families. “No reasonable mind could ever conclude, after investigating these facts and spending extensive time with these families, anything other than Disney willingly abandoned them.”

The lawsuit also alleges that Disney has a secret offering known as the “Magic List” whereby the company extends to select individuals five passes to gain immediate access to rides without even obtaining a Disability Access Card.

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

Thanks!

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

U.S HHS Sec Sebelius Final Action For Autism and IACC

idilabdull | July 3rd, 2014
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Alright, so we all know by now Sec Sebelius resigned from her post from U.S Health & Human Services. But before she left – Sebelius appointed two public members to IACC (Interagency Autism Coordinating Committee).

Dr. Ring was appointed and will be representing Autism Speaks. Dr. Dawson whom I just love represented Autism Speaks, but took another job at Duke University in North Carolina. Personally, I don’t know Dr. Ring well – but I have always liked Autism Speaks research department. Dr. Chung from Simons Foundation was also appointed by Sebelius. Dr. Chung replaced previous member from Simons Foundations who left IACC. Simons does a lot of autism research – usually related to genetics and autism. The cool and different thing that I noticed as someone from Minnesota is how when someone resigns from an autism committee  – the appointing authority replaces them, instead of eliminating the whole autism committee or telling us autism’s work is done. Have you ever heard of such foolish thinking? Well – of course you have because that was the excuse given by Rep Norton and Rep Liebling when they tried to eliminate MN autism task committee because God forbid …. wait for it…. some members left.

Anyway, I am sure Dr. Ring and Dr. Chung will be an amazing addition to IACC and to the autism community. Below is the announcement from HHS website.

HHS Announces Appointment of New Public Members to the Interagency Autism Coordinating Committee

The Department of Health and Human Services today announced the appointments of Wendy Chung, M.D., Ph.D., and Robert Ring, Ph.D., as public members of the Interagency Autism Coordinating Committee (IACC), a federal advisory Committee composed of federal agency officials and appointed community stakeholders that provides coordination and a forum for public input on issues related to autism spectrum disorder (ASD). Prior to her departure, former HHS Secretary Kathleen Sebelius appointed Dr. Chung, Director of Clinical Research for the Simons Foundation Autism Research Initiative (SFARI), and Dr. Ring, Chief Science Officer of Autism Speaks, to join the IACC in order to provide additional perspectives and expertise to the Committee. Dr. Chung and Dr. Ring serve as leaders within the two organizations that are the largest private funders of autism research in the United States. Both organizations were previously represented on the Committee by individuals who were appointed in 2012, but who have since left or changed affiliation.

Dr. Insel, Chair of the IACC and Director of the National Institute of Mental Health, welcomed the expertise and dedication that Dr. Chung and Dr. Ring bring to the IACC. “Both Dr. Ring and Dr. Chung will be important additions to the Committee, given the depth of their scientific and clinical experience, and their dedication to improving the lives of people on the autism spectrum,” he said.

Dr. Chung, in addition to directing clinical research at SFARI, served as a member of SFARI’s scientific advisory board. Dr. Chung is also the Herbert Irving Associate Professor of Pediatrics and Medicine and the Director of Clinical Genetics at Columbia University College of Physicians and Surgeons, where she is the principal investigator for the Simons Variation in Individuals Project (Simons VIP), funded by the Simons Foundation.

Dr. Ring, who has been the Chief Science Officer of Autism Speaks since 2013, also serves as the Chairman of the Board of Delivering Scientific Innovation for Autism (DELSIA), the venture philanthropy arm of Autism Speaks, and leads Autism Speaks’ collaboration with the Simons Foundation to launch the Autism BrainNet, a privately-funded multisite brain banking effort, focused on supporting autism research. Dr. Ring previously served as Autism Speaks’ Vice President of Translational Research. He holds adjunct faculty appointments in the Departments of Psychiatry at Mount Sinai School of Medicine and Pharmacology and Physiology at Drexel University College of Medicine. Prior to his work at Autism Speaks, Dr. Ring served as Senior Director and Head of the Autism Research Unit at Pfizer Worldwide Research and Development and worked in the area of psychiatric drug discovery at Wyeth Research.

These two new members of the Committee will serve for the remaining months of IACC activity under the Combating Autism Reauthorization Act of 2011, which will expire on September 30, 2014. If reauthorized, the IACC will be open for nominations of new potential public members in late 2014.

***

The IACC is a federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC provides advice to the U.S. Department of Health and Human Services on activities related to ASD, and works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different federal agencies involved in autism research and services, as well as people with ASD, parents, advocates, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government. For more information on the IACC, please visit: www.iacc.hhs.gov.


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

Thanks!

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized