Remember the Brady Bunch TV show – and how it was all about Marsha Marsha Marsha.
It seems we have similar idea for all autism grants and resources. It is all about ICI ICI ICI.
What is ICI – Institute of Community Integration. Don’t let the name fool you. There is nothing community like about them, there is zero sincerity in integrating – but it is an institute. A big, greedy all about them for all autism funding and resources institute.
Let me explain a little bit more. Back in 2008, we notice autism is 25% Somalis in Mpls school autism classes even though Somalis only made up 6% of the total district population. As a result, I called Minn dept of health to see what the heck and what they could about it. I get referred to child and maternal health dept. This department is totally sleeping at the wheel in autism and did not care or wanted to care. So, I go back to the commissioner and Gov Pawlenty. To make a long story short, Minn dept of health commissioner agrees to do an administrative study which basically meant getting school records and comparing where kids were from ethnically. And, Walla – they say – yep, yes siree bob – autism is up to seven times higher in Somalis, but this is only school records and not medical records. Keep in mind many of the ADDM records are mostly school records. But, MDH and CDC are in denial – blah blah blah.
But they say we will look further into. OK, so far so good. Months pass and nothing. We get maybe every elected officials ask and natta – zippity and zap and zero action from MDH. They pretend to not hear us and we already knew they did not care. In fact, during one of our meaningless meetings with MCH – they said to us “what is the point?”. The point is our kids have autism, our dreams have been altered and our lives changed forever. The point is MCH at MDH is responsible for all health for all Minnesotans. The point is – really what a stupid and insensitive question.
So, we go higher to the Federal government and ask for assistance. To make another story short, we managed to get $400,000 from federal. I am almost to the point of marsha – ICI analogy.
That is right ICI hears about the grant and applies. They get it and guess what they do in a Somali autism study, advocated by Somali autism parents to outreach to Somali autism families in the Somali community – you guessed it, they hire non-Somalis to do the data counting, be the researchers, be the research coordinator, etc. I know if this did not make me pull my hair – I don’t know what will.
To make another story short – we advocate again and defy this stupid and bias, prejudice and racist tactic and they finally hire one Somali abstractor a year later. As the saying goes a year too late and a year too short. It now has been two years in this study and Somali community is still confused, has no idea what kind of research this is, many parents are not participating because they sent letters to an oral community. Not kidding – really. But to them as long as they translate that is good enough.
Never mind, these parents can’t read or write Somali or English – hence we are an oral society, but of course it is always about Marsha Marsha Marsha – oh I meant ICI ICI ICI.
After almost two years of wasted hundreds of thousands of Federal dollars and time – they come to the Jan IACC meeting to give some preliminary data – oh wait they didn’t have it.
Now, because they have done such a horrible job in Somali autism study and even the recent DHS autism study which they basically were note takers of public comments that already HSAC collected and both DHS and CMS read – they have decided it is time to go back for more fish – I meant hogging another grant.
Because after all it is about ICI ICI ICI – never-mind they suck at outreaching to Somali community that lives in their backyard of West Bank Mpls. Now, they want to outreach to ALL minorities in Minn and get this to ALL rural autism families. Really, I now want to drink vodka or something. Wait for it…..It gets better, remember the bias and prejudice MCH at MDH that can deliver disparity and health discrimination on a silver platter with a hint of smile like no other wants to partner with them in this new grant from HRSA to outreach to us, (minorities and rural autism communities)
They must think we are stupid in minority autismville or rural autismville. I mean how does this work. They will do a horrible job, waste yet another Federal grant and provide no real reform that will trigger a positive policy.
Here is my question for the Federal agency that is responsible this grant goes to all Minnesotans including under-served in ethnicity and location to assure services and resources will be done in a manner that is culturally appropriate. Saying culturally appropriate does not mean doing, sharing the resources and partnering. I think they get confused and think if they say it and write somewhere then that is all we need and is good enough.
Insanity is funding the same village idiot mainstream agencies and expecting different results. Therefore, It is HRSA’s responsibility and obligation to make sure equality and sharing resources is established from the gate. Furthermore, CAA made this grant possible and we worked really hard for that legislation in Congress and HRSA has promised me time and time again of how they now have better and more inclusive policies to assure that we not only decrease autism disparity but eliminate it nationwide.
Well, this is their chance not just in Minnesota, but nationwide. No more funding mainstream suburban agencies to outreach to urban minority and rural autism communities and families. Enough is enough and they have hogged the resources and have produced zero positive results. it is time to look and do things differently. It is time for HRSA to stand up, speak up and wake up for minority and rural autism families who have gotten the short end of HRSA’s previous resources.
No more marsha marsha marsha arrogant agencies who only contribute to autism disparity and discrimination in services and resources. Our children are diagnosed years later, have almost non-existent access to early intervention, have limited access to waivers and other support. We are tired of this double standard and want equality, equality and equality.
Thanks!
Idil – Somali Autism Mom (determined to fight autism disparity from every mountain, river and valley)