Somali American Autism Foundation
There are various and multiple ways to address this un-equal and separate treatment for children with Autism.
1. No need to give more funds to yet another researcher to tell us what we know and see in our communities across Minnesota and the country.
2. Let's put some of that funding and correct the disparities and assure that Michael Smith with Private Insurance and Michael Smith with Medicaid/Medical Assistance get equal access to care and services. As of Oct 2011, there are 27 states with autism private insurance and only 13 states with autism specific medicaid waivers. This kind of deliberate policy is one of the reasons why disparity exists.
3. Since most low income people are minorities, people of color and immigrants in this country and as a result have Medicaid for health insurance, U.S Health and Human Services in collaboration with states must pay at a fair market rate for services so that providers are not neglecting to take children with Medicaid because they pay so low and would push them out of business. Disparity still exists with no end in sight because the policies that created it are still in place.
4. Services, information, therapy and treatments must be provided in a manner that is culturally and linguistically appropriate. Having an interpreter that looks like the patient does NOT qualify. The federal CLAS guidelines are often not clear enough and most states and autism therapy centers don't follow it or even aware of it. Thus, HRSA and Office of Minority health at HHS must do more to assure states and health providers are trained and follow these guidelines.
2011 Autism Legislation in MN
HF-0204 introduced 2011 Session - Autism Therapy Coverage - EXCLUDES LOW INCOME CHILDREN WITH AUTISM By Rep Norton:
This bill is very much similar to the failed HF-359 from last year of 2010 which stated state regulated private insurance which is less than 30% of children should pay for autism therapy but not for the child that has Medical assistance/Medicaid. It also does not have any accountability or transparency policies which would assure that treatment is medically necessary, fair for all children and is recommended by an independent psychiatrist/psychologist. We hope that all autism therapy is fair for all children regardless of where they are on the spectrum and regardless of their parent's income. Otherwise, we will never tackle and fix disparity especially since minority children get diagnosed later and receive less services such as early intervention. HF-204 does not cover you if for example, you work for a big company including state employees that is self insured and is regulated by the Federal government and your child has autism, he/she is not covered under this legislation. We need a comprehensive legislation that address all children not just select few. We need affordable quality of care in a cost effective manner that does not bankrupt our state or any private entity and this legislation does not address that as well. At the end of the day, an autistic child does not or should not care and be held a prison of where their parents work or if they are low income. Treatment should be fair and help all of our children.
Please Read the article below from Minneapolis Star Tribune which highlights the double standard in our state Medicaid system and how low income children who Medicaid was designed for is denying autism services while it pays for others. How can such discrimination exist yet we all claim we are tackling health disparity. Let's hope this is fixed for all of Minnesotans - equal opportunity for all children is a must especially those that are vulnerable and have autism. Thus, we must practice what we preach.
Kids with autism face double standard | StarTribune.com Apr 4, 2011 ... To Idil Abdull, an autism advocate in Minnesota's Somali community, it feels like a double standard. "If you're going to approve it for one ...Kids with autism face double standard. Officially, Minnesota doesn't pay for an intensive type of autism therapy
http:www.startribune.com/lifestyle/wellness/119121669.html
(April 4th 2011 by Maura Lerner)
Autism payments are under scrutiny StarTribune.com, Apr 7, 2011 ... Rep. Jim Abeler, R-Anoka, introduced legislation Wednesday ...
http:www.startribune.com/politics/119445264.html
Thank you Rep Abeler for asking equality for all kids with autism.
Otherwise, it is separate, unequal, unfair and un-American!
2010 Autism Related Legislation in MN
April of 2010 - Minnesota State Capitol:
Note to all Somalis; if you have a child with autism, is related to or will like to have children one day!
Autism Insurance Bill Number HF 359 will be heard on Tuesday April 27th, 2010 at State Capitol Office in St Paul. This bill DOES NOT AND WILL NOT HELP Somali children with autism. This bill will discriminate those children with state medical assistance, older than five and or have classic or severe autism. It allows providers to pick and choose children based on their parents income such as having private insurance as well as if the child is older and has classic autism. Most of the Somali children in Minnesota with autism are usually diagnosed around age 5 and they mostly have state medical assistance and classic/nonverbal autism.
If this legislation becomes law, our community and our children will suffer. Please call your local representative and ask them to NOT support it unless the language is changed to include our community and our children. If the treatment or therapy is good enough and medically necessary for the child with private insurance then it MUST be also good enough for the child with Medical Assistance/Medicaid.
Contact Rep Tom Huntley rep.thomas.huntley@house.mn Call Jan Horner to testify 651-296-5496. Also, contact the author of this bill; Rep Kim Norton of Rochester and ask her to be more inclusive in the language to make sure all kids with autism get therapy services regardless of their age, severity of autism or their parent's income. Her contact info is rep.kim.norton@house.mn Our community is suffering with autism higher than any other in Minnesota and it should not be excluded in therapy and treatment services.
THANK YOU AND PLEASE DON'T FORGET TO MAKE YOUR VOICES HEARD!
As a result of Somali parents with autistic children, members of Confederation Somali Community of Minnesota, members of New American Home Care, members of Somali American Community and many others' diligent advocacy, children with autism who don't have private insurance were protected during the health and human services hearing at the end of Minnesota legislation in May 2010. All children with autism deserve equal autism therapy. SAAF thanks everyone that testified, called, wrote, sent email and supported our cause.
We especially thank all of our elected officials that supported children with autism regardless of their parent's income.
Lobby of one: Making sense of Legislature StarTribune.com
There are so many different types of autism therapy but one of the most popular methods is intensive therapy which is often referred to ABA (applied behavior analysis)
Autism is such a long spectrum that no two kids have it the same way. Some are fortunate and are effected towards the high end, some are moderate and some are severe end of the spectrum.
Often children that are non-verbal are viewed as having classic autism. Unfortunetly, too often intensive therapy providers prefer verbal or children with autism on the aspergers side.
There are many conflicting research on how and which children will benefit most from ABA. Thus, the need to do more research on autism treatments particularly older and nonverbal children.
In Minnesota in particular University of Minnesota which is the only big university here and Mayo Clinic - there are currently no research looking at which kind of autism therapies works for which kids where on the spectrum and at what age.
Note to upcoming Univ of MN President Dr. Kaler:
We as parents of autistic children hope that our big university and Mayo take autism the serious medical and public health crises it is.
Autism Legislation in Congress May 2011:
S 1094 & HR 2005 Introduced by Senator's Menendez , D-NJ (a pioneer on autism issues), Sen Enzi, R-WY, Rep Doyle, D-PA and Rep Smith, R-NJ. S-1094 Referred to Senate Committee on Health, Education, Labor and Pensions; HR 2005 referred to House Committee on Energy and Commerce.
Note: (These four elected bi-partisan officials in congress have real guts by standing next to autism families across America - Thank you so much and may God Bless You!)
It Asks the Re-Authorization of the Combating Autism Act of 2006 by President Bush for continuance of Surveillance, Research, Early Detection, Education and IACC Funding.
Please call or email your congressman/woman to ask to support and co-sponsor as it has bi-partisan support which autism usually has because no one is immune to this devastating disorder. President Obama has pledged to sign this bill when it reaches his desk. Thank you Mr. President and God Bless you.
Good News! Re-Authorization Combating Autism Act passed House of reps and Senate in Congress last week in Sept of 2011. We thank Congressman Cantor and Reid for putting it on the schedule for a vote and we thank the authors of the Bill who fought for autism families with compassion and respect.
Now - it awaits for President Obama to sign it. Stay tuned for that.
President Obama signed it on September 30, 2011 - the day it was to expire. Even though, the White House did not make this celebration a public event as they do many other laws - we are still grateful and appreciate that it has been extended.
Now what happens next?
The ball is in the court of researchers to use these funds to do research on autism from genetic, environmental causes, which therapy will work for what kid/adult where on the spectrum. The cost to society per child per year. The emotional and financial toll on parents and care givers and how doing nothing simply cannot be an answer. There is research needed on how effective various autism therapies and at what age groups, etc. We really hope as parents and advocates that the research world from universities and public health take autism serious and never tell parents just accept it and move on. WE CAN NOT ACCEPT AND WANT OUR CHILDREN TO REACH THEIR FULL POTENTIAL JUST LIKE ANY OTHER PARENT WOULD.
SAAF thanks everyone that worked behind the scenes feverishly for all of our children. Also, contact Sec Sebelius - Secretary of U.S Health and Human Services to assure that IACC has diversity and minority communities are represented including someone from Office of Minority health at HHS given that IACC has someone from all other federal HHS agencies and a minority autism parent.
Autism Legislation sitting or napping in Congress previous sessions:
Information Coming soon!
August 2011; University of Minnesota - LEND Program was funded for five years to train and teach graduate students of public health, speech therapy, Occupational therapy and Social work. These students later become the therapist and nurses our children often see. There was one Somali social worker last year, but no student this year. We ask Somali students in these fields to check the LEND website by Jan of 2012 and/or call them or us if you are interested in this fellowship which will greatly help.
for more information, please see www.lend.umn.edu
Oct 2011- Ramsey County; We are happy to announce Ramsey County hired a Somali social worker in their DD/mental health division who will see many of our Somali autism families. We thank everyone at Ramsey for their leadership in recognizing the importance of providing services in manner that is culturally and linguistically appropriate. If you live in this county which includes St. Paul, Shoreview, Mound, etc and have a child with autism - feel free to contact Nasro Mohamed for assistance. She is fantastic!
July 2011; University of Minnesota - Autism Clinic was awarded the Somali Autism Surveillance Grant by CDC, NIH and Autism Speaks which will count 7-9 year olds in Minneapolis of all ethnicity by medically diagnosing children. This is step two to the last study by Minnesota department of health in 2009 which only looked at educational records in Minneapolis autism program. This study will be done by summer of 2012 and we hope the results will verify what we already see with our eyes which will hopefully lead to research on ultimately cause, cure and prevention for all kids. We ask all families of every background to participate in order to get true and accurate numbers.
Hennepin County: Now has a visual DVD that explains county services in English and Somali which can be found at;
http://www.hennepin.us/portal/site/HennepinUS/menuitem.b1ab75471750e40fa01dfb47ccf06498/?vgnextoid=d56c62a03c274210VgnVCM10000049114689RCRD
We Thank Commissioner Dorfman, her staff, Kelsey, Mohamed, Ladan, Vinny and everyone at Hennepin county that translated this information and worked hard behind the scenes. Please make sure you distribute this to all families especially newly diagnosed families so that they know what services and resources are available to assure their child gets appropriate therapies and education.