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

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


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

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

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

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

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

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

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


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


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


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


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

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

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

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

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


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

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


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

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

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

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

Idil – Somali Autism Mom & Minority Advocate

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