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

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

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

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

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

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

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

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

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

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

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

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

Thanks!

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

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

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

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

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

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

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

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

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

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

Thanks!

Idil – Somali Autism Mom & Minority Advocate

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

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

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

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

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

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

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

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

FOR IMMEDIATE RELEASE

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

Launch Autism Hotline for Concerned Families

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

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

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

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

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

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

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

services for Korean families of children with autism.

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

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

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

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

KCS Kids’ Line Service Overview

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

About Autism

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

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

About KCS

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

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

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

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

About Autism Speaks

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

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

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

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

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

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

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

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

Thanks!