Alright – so, for decades now, autism families have been struggling with housing. As we all know, autism is a developmental disability and often children have behaviors that causes self-injury and property destruction. Even for my own self, we have had more water damage and floods than I can count. I remember, one night while I was sleeping, I heard water running and thought it was raining outside. Nope, it was our home being flooded. I finally realize, run to the bathroom and my kid is just chilling in bathtub overflowing having the best sensory time. This is our life and is 100 times worse f ..read more

Alright – so, even though Bud passed away almost a year ago, I am having a hard time digesting it. I know he is in a better place, but this had hit me very hard. Bud was by far one of my favorite people in Minnesota. He was extremely smart, articulate, kind, funny and soooo passionate about and for people with disabilities. He knew disability laws more than anyone I have ever seen. He had an unbelievable ability to recall every detail about every disability law, how it came about and everything in-between. My last conversation with him was last year. I called him to learn more about the proces ..read more

Alright so, now that I have retired from advocacy, I reflect and see what we did and how it was done. I realize that even when you have good policies and laws the fruits still depend on who is in charge at the state Medicaid agency. I have advocated countless DHS commissioners and asst/deputy/etc., but the current one takes the racist cake. Harpstead is by far the worst one. She is savvy in how she screws with minority autism families. She hires Black and brown people that she knows do not give a flying hoot. If you look at the DHS leadership bio, you will think – it is a poster in a minority ..read more

Alright – so, in full disclusure, I like Jamie so I may be a little bias. Why would I ever like anyone in the current DHS? Well – Jamie has been here for a long time. She is down to earth, humble, approachable and did I say approachable – that is the opposite of so many in the current EIDBI team. Anyway, what the heck is revalidation? she explained to put it simply – simple. What DHS and simple, am I drunk. No, I do not drink. Not yet, kidding – I am  not allowed to drink. Jamie said revalidating is making sure the information the state has is correct, and is required by the Obama care (4 ..read more

Alright – so, where can I even start. Because the neglect and subconscious bias of DHS’ EIDBI team, BCBA is now required for EIDBI benefit. There are not enough BCBAs in this state at all. They did not consult with stakeholders as required by EIDBI statute. They did not check to see if we have adequate and diverse BCBAs. We do not. So, what happened as a result? BCBAs came into Minnesota from various agencies with the intent to take financial advantage of minority ABA agencies who are mostly Somalis in Minnesota. Ugh. Soomaaliduna waxay dhaqan u leedahay in ay lacag iska bixiyaan iyaga oo aan ..read more

Alright – so, if you know then you understand my ughhh with the BACB board. Although they have been sort of listening and getting a bit more diverse in their board, sadly not staff though. They even now have data that shows us the diversity of BCBAs nationwide. This is a board that was all white when I started sending them emails to remind them how yucky they were maybe over a decade ago. They are located in Colorado in marble flooring, mighty building and literally make up ethical rules. Who is to say your morals and ethics are better or worse than mine, right? Well – BACB thinks it has the r ..read more

Alright – so, I am totally retired now. If you understand the system in how state agencies are supposed to work in Minnesota for Autism, then you know that Minnesota Department of Health (MDH) is the agency that is supposed to provide information to autism families or anyone who has a child with special needs. They get federal funds from Health Resources Services Administration (HRSA) to do this. Years ago, I and others in the Somali community (Hassan and Anab) have advocated with HRSA to hold MDH accountable. MDH hired a Somali (Asli) to help autism families and provided small grants to suppo ..read more

Alright – so, oh boy and oh boy let me count the ways the Minnesota Department of HUMAN Services discriminates and dismisses the autism community, particularly the black and brown families and EIDBI providers. I asked a highly educated and articulate Somali person who also owns an EIDBI agency why he does not speak up about how DHS’ EIDBI team – Ms. Berning and Rep. Hicks constantly screw with our community. His response was a spon on which I never even thought about. He said – how can you possibly fight a shark if you are inside his mouth. DHS is a shark, all of us are inside their mouth and ..read more

Alright – so, if you are an autism parent or in the autism field, then you have heard that a white liberal, privileged and entitled woman has been elected in Rochester to the state legislature. She is also the policy lead for autism in the state human services agency. And she is in every human services committee in the house. Now, this is what they call really privileged. How does this even work. Is Melissa Hortman blind or just playing favoritism. Is DHS stupid or tricking people. This would be Saturday night live funny sketch if it were not sadly true. How does even work. From Jan to May, Re ..read more

Alright – so, I have technically and hopefully in reality retired from advocacy. I have had a chance to reflect how I and soooo many other Somali autism parents and Somali community did this and what we actually did. First, to advocate is to change whatever the status quo is. This means people who are benefiting from the current situation are not going to be happy. Why should they? They are most likely enjoying and reaping the benefits of the current status. Our response was – boo hoo and cry me a river. You do not have to like us, but we will advocate to change laws and policies; we will elec ..read more