Monthly Archives: May 2013

Comments Off on MA/Medicaid Autism Coverage Approved in MN Capitol

At 1am on Thursday, May 16th, 2013 – Autism history was made in Minnesota when Health and Human Services Conference Committee unanimously voted for coverage of Autism ABA and other development therapies for the poor and MA/Medicaid autism family that is disproportionately a minority. I am feeling tired, but ecstatically happy and overjoyed. This will assure children will get autism therapy up to age 18 regardless of if they have fee for service (TEFRA) or Managed Care Medicaid. This law will also eliminate the current double standard coverage for the have-nots. Equal access, equal coverage, and equal rights prevailed, what a feeling!

We have been fighting this since the 2010 session consistently, persistently with a laser-like focus with simple advocacy and leg work.

Background History:

State legislatures started this session with lots of ambitions for autism. The wealthier middle and upper-income families were more coordinated, hired K street-type lobbyists and even a Hollywood-type publicist to get state funds from the Health and Human Services budget to pay for ABA Autism therapy. Many of the ideas were driven by few well-off for-profit providers that wanted to keep their bottom line up.

It got interesting and heated when HHS Finance had to cut at first $150 Million from its budget then due to the new taxes that went down to $50 Million – how and what other poor, disabled, or elderly community will lose to benefit the middle and upper-income communities. That was the $25 Million question?


We in the Minority Autismville families realized early to play the game in which we would hold politicians to their policies and how it will affect the under-served and overwhelmed poor and minority autism communities. Don’t hate the player – hate the game.


As you all know, all three MN branches of government this year are held by one party which meant whatever came out of the state Capitol – they would have to own it, explain it, and defend it to ALL Minnesotans, especially their core voters. As a result, Governor Dayton understood this game early and allocated $12 Million for autism intervention therapy. It is worth noting that previous legislators from different party charged DHS to recommend a better and more cohesive method of how our state should pay and fund early intervention autism therapies. Thus, HSAC’s recommendations were pretty good despite the fact that I was the only person of color to ever participate and HSAC has zero minority members – that is right zero look like us and they decide not just autism policies, but so many health policies for DHS and the state.


The House: What did they do?

Well – they went wild is putting it mildly. Minn House of Reps kept having bills and amendments that were all over the place in coverage, fairness, equality, and cost. It was very difficult to even get a reasonable fiscal note. Initially, equal access for the poor MA autism family who is disproportionately a minority was out of the window and was never even considered. There was no autism agency of color that participated, had input, or was listened to. In fact, those that are not for profit were even for the wealthier autism family. Clearly, as a Black autism mom and advocate, this was frustrating and disturbing at the very least. I would say Rep. Clark and Rep. Abeler were the only voices of reason here. Most did not ask questions of equal coverage, research, or fairness. Few asked about the cost in the finance committee, but then voted for the expensive state-funded private insurance coverage. I was mostly confused here. Many would ask here “why were we so frustrated”. Really, asking us that is like asking an Eskimo why they are cold.


The Senate – What did they do?

Well, in general, the Senate is more approachable and sincere. I would say with the exception of the Commerce Committee, all of the other committees chaired by Sen Lourey and Sen Sheran asked questions, amended the original private coverage bill, asked for fairness and equality coverage. And, in the end, they took off both public and private coverage. They said they did not have money for either one. Well, at least this body is fair. My other favorite thing was they actually asked testifiers in the order they requested, they let everyone finish their thought and testimony, and they asked for expert information from DHS. Even Sen Hayden pretended to care here about his poor and MA minority autism families.


The Governor’s office – What did they do?

Well, I am not sure how to articulate this – all I can say is that there must be a higher power, that is looking out for the under-served autism family and in fact all autism families. They say what makes a politician great or bad is their staff and Gov Dayton just happens to get one of my favorite health policy folks in the country. As a result, his office worked tirelessly to figure out a way for all autism families to get appropriate autism therapy and intervention. First, they supported DHS’s language and the Governor’s proposal.

Then they worked with the wealthier group and came up with a very creative method of assuring autism coverage that would not have any fiscal note for the HHS budget. I was very pleased with their approach which to me seemed inclusive and fair-minded.

Who can ask better – really.



I would say the poor, MA/Medicaid most likely minority autism family that could not afford a lobbyist, a publicist or a red T-shirt-wearing gang won and prevailed with simple good old American activism. These families will now have starting early next year access to ABA and other developmental autism therapies for up to age 18 with no cap in enrollment or allowed amount. This is amazing for our families and our communities of color in Minnesota. This kind of coverage does not exist for the low-income autism family anywhere in the country. So, huge win and a difficult journey but a fantastic end. Awesome!


Politically since these folks are politicians – I would say Gov Dayton came on top because he said what he meant and meant what he said. Rep. Abeler kept his promise from last year and continued this year. And, Rep. Clark was our punching bag for the wild house and was always kind and welcoming. The most pleasant surprise came from Rep. Liebling who offered the final amendment in literally the final hour around midnight, (really tired now) before the final vote to assure the criteria and language for both public and private mandates were similar to eliminate differences & disparity so that we don’t have to decrease it later. In other words, preventing disparity & discrimination from the beginning is always a better policy than decreasing it later.

I have to say I was shocked by this in a good way.


The bottom line is we need to learn to vote for those that deliver better policies for their voters in action and not just preaching election words. Quite frankly, I would rather have a politician who talks like a sailor and has a heart like Mother Teresa and a mind like Nelson Mandela. In addition, the words, decrease disparity, minority, and even Somali were said more this session than I heard in previous sessions, but if they are just words and not good preventive policies then (hadal badani haan ma buuxsho is my take). Words are meaningless unless they are backed by meaningful actions and policies.


Regrets – None from our corner. However, I think if the middle/upper wealthier group worked with the poor and minority side, we could have achieved more in a united front. Collaboration and cooperation are always better than bullying, dismissing, and intimidation. I hope they think about that next time. Our kids are just as American and MA/Medicaid autism families are financially vulnerable which means helping your in need fellow American brother/sister will go a long way in the end. To the red t-shirt wearing gang who underestimated our efforts – don’t hate the player; hate the game. We won by using simple leg work advocacy that was focused and persistent until the end.


God Bless!

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

Idil – Somali Autism Mom (determined to fight for equal access to autism services from every mountain, river, and valley – together we can do it).

Category: Autism Policy

Comments Off on Appreciation from Somali Community for Autism Parent Advocates

On Friday April 26th at Safari Hall in Minneapolis – Somali Community members held an amazing event recognizing Somali autism parents and advocates.

There was food, music and iPad that families could win. I was given an award for my advocacy along with other parents that started this journey with me years ago now.
Many community members told us their support and compassion for us. Many of them contributed to pay for the food, banquet hall, iPads and their time which was priceless.
Many parents talked about how hard it was for them to accept autism, the difficult times and journey they had with getting adequate services, the fact there is no Somali agency funded by anyone to help them navigate the complex system of autism services and resources. Hearing the desperation and hardship of my fellow autism moms and dads is what drives me as an advocate. I feel for them. Some of them talked about the medical conditions they got as a result of the stress of autism and lack of support from state of Minnesota. 
Many talked about how we lost our first American born children generation to autism and we need to do something so that we don’t lose the next generation. Early intervention only works if parents are told about it and MN state health dept does not. So our families have to suffer because of the neglect of our state health dept. How sad and frustrating is that. 
We are very thankful and grateful for this especially to Mariam Egal, Dr. Fahia, Mohamed, Farhio, Saalax, Safari Hall owners, Abdulrahman (flight 13) Anab and Amira.
Thanks everyone for this.
Idil – Somali Autism Mom

Category: Uncategorized

Comments Off on Autism Policy Update From Minnesota Capitol

Have you heard the saying, when Pigs Fly? Let me explain what I mean by that.

As you all know, everything about the Capitol is politics and Autism is all politics.
Now, MN DFL are notorious for saying “we care for the poor, we are for the 47%, we are for equality, etc”. And, MN GOP is notorious for saying, “we are for fiscal responsibility, we use facts and evidence to guide us not emotion – OK, take off when Speaker Boehner cried”.
In Minnesota state legislature, the opposite is happening and here is how;
1. Many well organized like a well oiled machine wealthy parents who can cry a river, sold their houses, cars, took out 2nd and 3rd mortgages and left their luxury 6 figure digit jobs came to testify this year. 
2. Meanwhile, poor families who have no idea where the Capitol is even located, can’t take a 2nd mortgage because they live in public housing, can’t sell a car because they take public transportation and have never seen 6 figure income because they make minimum wage are not seen.
As a result, I saw the MN DFL write autism legislation that short changed the poor and gave more butter to the wealthy.
It gets worse, then the tighten your belt MN GOP voted for the unlimited hours, unlimited forever ABA therapy with no regard to research, cost effective and forget fairness and equality.
I know, I was not sure if I should cry or party like it was 1999 and could not believe my ears.
Oh, more when pigs fly news – MN DFL leaders proposed a budget cut of $150 million to Health and Human services this year. What – really, cutting from the poor, elderly and disabled. 
I asked one of the LA’s for a member why they kept voting against poor autism children and he brutally told me the truth “those parents cry a river and you say fact is this and research is that and talk like an insurance agent or a lobbyist”. It is easier to vote against those blood sucking insurance companies and their lobbyist.
That is very true, I don’t cry or tell sad stories in my testimonies because I believe that parent or patient anecdotal should never drive public policy. It should be driven by three factors;
A. What does the current research and science say?
B. How much funds are in our budget for this and how many people are affected?
C. How can we make it so that the access for ALL is fair from the gate?
Everything else is irrelevant, can you imagine if FDA, CDC or NIMH recommended policies or medications based on parent/patient stories. What those sad & frustration stories should drive is funding allocated for research to prove it. 
I think we can now all say we saw pigs flying at MN State Capitol. 
Currently as things stand and conference committees have not yet started and neither bill has been heard on the house and senate floors. Those with guts will offer amendments to correct it or be silent. 

MN Governor Dayton Autism Proposal for Medicaid/MA $12. Million

In alliance with HSAC and DHS – Governor added $12 Million to his overall budget to start an autism specific benefit. HSAC recommended a holistic approach of multidisciplinary approach which included ABA, Education and Developmental approaches.

Gov Dayton also wrote a letter to U.S HHS asking similar coverage for the private market.

This is by far my favorite proposal. I would only make the rules tighter so that the less informed and low income family don’t get less services.

Minnesota Senate Chaired by Sen Laurey:

As it is custom had the Governor’s version in his HHS Finance bill SF1034, but in the end took off both the MA and the Private insurance by Sen. Eaton which asked unlimited ABA hours for unlimited age – forever for the wealthy family.

Well, I guess if nothing else, we can say Sen Laurey and in general both sides of the isle in the senate are fair. Maybe they believe “do it for ALL or do it for NONE approach”. What a novel concept.

Minnesota House Chaired by Rep Huntley:

Rep Huntley’s HHS Finance omnibus bill HF1233 has essentially the Kitchen sink amendment by Rep Norton, and her private language which wants to give more the wealthy and almost nothing to the poor. 1233A60 (look it up – I kid you not).

So, this version which has the support of attack dog Rep Liebling and others of both parties is my least favorite because it wants to establish a double standard and two tiered autism coverage. One benefit is very generous and is for the wealthy family and the other version is very limited to almost non-existent and is for the poor/low income most likely minority autism family.

The final say will be Governor Dayton because he has to sign all bills that come out of the state legislator. He can sign a whole omnibus bill or line veto what he does not like. Now, if Governor Dayton who is up for re-election next year and won less than 10,000 votes last time chooses the House version is saying “I am OK with double standard and discrimination autism coverage and short changing the poor autism family”.  My gut feeling tells me he won’t say that, but I never trust a politician in Minnesota, given the history here. 

Therefore, we need to watch them like a hawk until the session is done and what version is signed and becomes law. I also highly recommend Somali autism parents to come to the conference committee meetings which I will post here once they are announced. This is where equality prevailed last time, Rep Norton wanted to throw poor autism families under the bus, and we were helped by Sen. Berglin and Sen. Pogemiller. Sadly, they are not here anymore and everything sort of sucks there now. (not a typo)
Idil – Somali Autism Mom
Keeping hope, faith and common sense alive.

Category: Uncategorized

Comments Off on Open Letter To Sen Hayden and Rep Loeffler – Help Poor Autism Families

First, let me explain why it became important to write this blog and only for these elected officials.

Both Sen Hayden and Rep Loeffler represent a large Somali population in South Minneapolis and North East Minneapolis where there are tons and tons of Somali autism families that voted for them. And, they are both now part of the health and human services conference committee. They will have a huge hand in what language and coverage is decided both public and private autism children.
Therefore, their votes should reflect their districts, if not we should be aware and hold them to it.
Let’s start with Rep Loeffler: Remember the saying (Waraabaha ka ciya iyo ka aamusan – kee baa la qaataa. Ka aamusan still stands) Rep. Loeffler does not say much, looks low key and hardly speaks in committees. Nevertheless, Rep Loeffler has no interest in knowing or voicing an opinion about autism at all. Rep. Loeffler will do this without a word and without one iota of an emotion. Hence waraabaha ka ciya ayaa la qaataa. I remember when Rep Loeffler would say the other side would hurt the disabled, funny how autism which is under disability and is being hurt by Rep Loeffler is OK now.
Now, let me first describe Sen Hayden. He is charming, charismatic and funny sometimes all at the same-time. Sen. Hayden can give a speech like no one else and say words like decrease disparity and decrease education gap as if it was holly water and you want to drink it. Sometimes, I get confused whether I am watching Danzel Washington in Training Day or Tom Hanks in Philadelphia or an elected official. Sen Hayden can probably sell water to a drowning African American person even me. Sen Hayden has voted against autism equal access bills in 2010 and in 2013 (so far). In fact, he has managed to convince other senators in HHS Finance committee to vote for the unlimited hours and unlimited age for the wealthy private insurance autism child while the poor and low income autism child has many limitations and rules to quality for the same therapy. I kid you not.
Sen. Hayden can elbow schmooze the Woodbury and Minnetonka wealthy non-minority autism family who took 2nd & 3rd mortgages to help their children while ignoring and dismissing the South Minneapolis poor Autism family that can not sell a house because they live in public housing.
I kid you not. I hope Sen Hayden remembers he works and represents South Mpls.
In addition, they both represent constituents that have gotten the short end of all sticks from education to health to economic opportunities. Minneapolis is bottom #48 for education gap between Black and White children, has bottom 10 worst health disparity including autism for Blacks and Hispanics. And, get this – Minneapolis has the highest gap for employment for African Americans – this includes Somalis by the way.
I think Governor Dayton said in a town hall meeting in Shakopee last week, elections have consequences. I say Elected Officials VOTES should also have Consequences.
At some point, voters in these districts have got to wake up and say to Sen Hayden and Rep Loeffler (you work for your district and if your votes don’t reflect that, we will not vote for you again) Insanity is voting for the same people and expecting different policies. Think about that.
Sen Hayden represents District 62 and has the most Somalis in Minneapolis. He won last election cycle by 86% out of 31,686 Votes. There is zero chance for a GOP here, but there are at least few Somalis and maybe African Americans that can do it though it might be hard to get DFL endorsement. Let Abdi Warsame and longtime DFL endorsed Lilligren be a lesson here. Nothing is Impossible.
Rep Loeffler represents District 60A and won 81% of the vote – out of 20,790 Votes. This means a GOP has zero chance, but I bet another DFL with a backbone can do it. I hope someone does.
I know, I probably pissed them off even more now, but really what is the point of voting for elected officials who don’t represent the common good of their voters?
Sen Hayden and Rep Loeffler – the goal is not to piss you off, but to make you aware that the status quo is not working for the people you work for. We need change in policy or change in you.
To their voters – Ask yourself a simple question, and if you are still at the bottom of all stats – think again and give the other guy or lady a chance.
Idil – Somali Autism Mom
May 2nd, 2013
Comments Off on Somali Autism Parents and Advocates Appreciated and Supported Event

Friday April 26, 2013 was a very busy day for Somali Autism Community.

In the afternoon, Minnesota Department of Human Services Leaders were kind enough to come and listen the heartache, struggles and stories of Somali autism dads and moms. This lasted over two hours of painful stories to hear for me. There were parents who never heard of ABA, let alone get it. Yet, their children were in their teens and were born right here in Minnesota.
There were parents who had strokes, heart attacks, depression and mental health conditions because of the stress of autism, having multiple children with autism, not having waivers, support, early intervention access. People often ask me what drives and where do I get the energy to endure all of the crap (not a typo) I get bombarded with at the State Capitol. In summary, these parents and their painful stories do. They are as American as Apple Pie – yet they get short changed. I will keep asking until services and resources are equal and fair for all.
They don’t come to the Capitol, don’t have lobbyist that coach them what and how to say, when to shed a tear, which legislator to give a well written information, but they are the most needy children, the most financially vulnerable families and they just get up and keep making lemonade.
They don’t have the ability to take 2nd and 3rd mortgages to help their children because they live in public housing, they don’t have cars or motorcyle to sell because they take the public transportation and they don’t get access to early intervention or ABA like the more wealthy and mostly middle class caucasian children do. 
In all of the states this country has, Minnesota is the only one that helps the well off autism family with early intervention/ABA therapy while it denies families with managed care Medicaid who are low income and disproportionately minorities. This is beyond belief and must be changed now.
After this event – we were very surprised that our community particularly Confederation Somali Community of Minnesota Executive Director Dr. Fahia, Mariam Egal, Somali Parent Assoc – Director Mohamed, Anab from Univ of MN, Amira from Ramsey county, Said and Abdulrahman from Mpls School district, Farhio from farhio show and last but not least Salah Barre from Safari Banquet Hall put together an amazing event for All Somali autism parents. 
They told us they stand with us, behind us and in front us united and unbreakable. They told us they understand our frustrations and despair. They gave us awards and some parents won iPads. 
It was a wonderful event which we all appreciate and are very grateful to everyone who contributed to it. God Bless you All!
Idil – Somali Autism Mom and Minority Advocate

Category: Uncategorized