Monthly Archives: August 2023

Comments Off on MN Medicaid Agency Gives Person-Centered Training to EIDBI Providers – 8.31.23; My take

Alright – so, today the state Medicaid agency (DHS) did person-centered training to families, providers and others who were interested. It was given by their clinical lead – Ms. Berning. She is a BCBA and did credit education units for her BACB board. One bears the question: what the heck does CEU for BCBAs have to do with providing training of any kind in a Medicaid funded program?

The goals should be doing training and not taking time that we quite frankly do not have. Why is the state Medicaid agency allowing this, particularly the supervisor there – Mr. Flint? Why would he not ensure EIDBI concentrate on using time wisely and not worry about what the BACB needs or does not need. Further, EIDBI also has developmental components and I do not see CEU for other modalities – it is all about BCBAs. Remember Marcia, Marcia, Marcia from the Brady Bunch. Ugh. These people irritate me to my core.

She did sooooooo many things wrong from the get-go….

  1. If I have time, I will answer your questions. Then she said the family is in the driver seat. This is the seat that is getting silenced by her and her protector – Mr. Flint. How is that for oxymoron?
  2. Then she talked about working on things the family wants to work on – what now? Have families be at the center of their child’s treatment’s first step is listening to families and not silencing them because you do not like our questions.
  3. She did not mention where the skills of the child/family are at. No surprise there.
  4. They need to record these trainings that are drive through.
  5. As usual with DHS EIDBI, it is in dictatorship mode – we were muted and our cameras off. Saudi Arabia, Mussolini and Idi Amin combined had more freedom than DHS EIDBI’s one hour drive through trainings. Why are our faces hidden, and voices silenced in a publicly funded program?
  6. She did not explain what the heck person-centered is, the research behind it and how all behaviors are embedded in the person’s culture. I for one would like to know more about the origin and history of person-centered and why it is important in autism therapy.
  7. As usual, she sounded nervous, although today she did not repeat herself 100 times, that was refreshing and time saving. Cry me a river – protector, Mr. Flint when God forbid, we have feedback for your staff.
  8. Oh and – how do families whose first language is not English even understand this drive thru one-hour training? Your guess is as good as mine. Yay, this is why we stayed up late at night in the state capital for years advocating for EIDBI, lovely!
  9. She forgot to mention the CMDE – you know the father/mother of the ITP must be used when developing the ITP. In other words, we have to make sure the CMDE is written with the child/family in the driver seat.
  10. She forgot to mention – sometimes, maybe often in minority and low-income families that have zero county and/or are struggling with schools and that is what they need first. EIDBI is NOT just about ABA and trials. It is about helping and supporting the WHOLE family. Why would a privileged white woman ever understand that though? Ugh.
  11. She finally did say be aware of subjective biases and how we avoid assumptions and judgements. Ahhh, what now? Isn’t that what she and her protector Mr. Flint are doing? Judging and subjective biases by silencing those of us that disagree with them or have different ideas and comments. You cannot even make this sh…t up. She is preaching the opposite of what they practice.
  12. Hey DHS EIDBI, have you listened and compared your words to your actions?  – Classic oxymoron.
  13. When she was talking about individual goals/targets like operationally defining behaviors; meltdown vs looked away, etc., unlike them I give credit when it is due – she was in her territory and made sense. Hey DHS, learn to share credit and give people when they do good or accomplish something even if you do not like them. That is called being a reasonable adult and not a toddler having a meltdown – pun intended. I dare you to give minority autism families especially the Somali community credit for the incredible work we have done in EIDBI in Minnesota and nationwide. I dare you. Lunch on me for a week if you learn that life important skill.
  14. Oh wait, she is mentioning making referrals to other providers. This is good. Remember the days when ABA providers would never refer. In fact, they would discharge us if we dared went to speech, school, OT etc. Good ol days! not really.
  15. Data collection – her domain. She sounds like she knows this area. Giving credit when it is due. Lesson for DHS to learn, not holding my breath.
  16. When explaining executive functioning skills – not bad, Ms. Berning. I only wish you were good at people skills and did not always hide behind these white men at DHS that seem to protect you at every corner even when you are wrong. Before it was Mr. Nord and now it is the new hero Mr. Flint. Just lovely, we aren’t all as lucky as Karens – privileged and entitled. Ugh.
  17. Expressing their frustrations – is this for the child and family? Oh oh oh, I have one….I am extremely frustrated with you Ms. Berning and your new protector – Mr. Flint. But you are silencing those that disagree with you. There is a name for this…. What is it?……oh yeah the opposite of person-centered which is what she is preaching. Maybe you at DHS EIDBI practice what you preach. Ugh.
  18. Why isn’t this being recorded to eliminate he/she said or my favorite names – ranting, angry…blah blah.
  19. She talked about care coordination – not bad except DHS EIDBI does not practice coordinating with families that disagree with them.
  20. Stop talking about the BACB code of ethics crap. A BCBA discharging my son at age five and another BCBA demanding we do 40 hours at age 12 is exactly why I became an advocate which led to EIDBI and Medicaid covering autism therapy. The notion that BACB cares about any kind of human ethics is useless, false, and not happening on the ground.
  21. Denying a child a preferred item/activity – not bad how she is explaining. It is good to ensure there is a replacement behavior that has an equivalent purpose. She said think about what the child learning is – not bad. For me, it was, can I be on the phone for more than five minutes without my son having a behavior. So that goal is not just about the child but also the parents. She did not talk about family-centered goals which is part of the person-centered since the child does not live in silos; the kid is a part of family. What goals are important to families and how do we meet them? Personally, I would rather help the parents first before I get to the child. Similar to how in airlines they tell you to put your mask first then put the child’s mask. Dr. Insel – Dir of NIMH and IACC chair used to say – if families are on fire, providers have to put that down before they get to the child. In other words, writing perfect ITP goals for the kid when the family has no services, does not sleep at night, going through other things, etc. will do nothing for that child. I think we have to first ask mom/dad, etc.,. What do you need, how are you doing, do you sleep more than 5 hours a night, are you having any mental health issues that need family caregiver counseling, are you able to handle IEP meetings by yourself, what services do you get from the county? are those adequate for your family, etc. Again, a privileged white woman like Ms. Berning or her new hero protector, Mr. Flint would have no idea about these challenges. As the saying goes, I tell you from my experience and what I know, right.
  22. Barriers to any goals that the child did not learn – she was good here. We should be critical of ourselves if we did not teach what we said we would teach the child and do better. In parallel, we should use the same feedback for any family goals that we did not accomplish for the family. She did not mention any family-centered goals.
  23. It is 9:50am and she is still talking. I would give you feedback – give the last 15 minutes for questions and comments from your learners. This would be practicing what you are preaching. Ugh, they are becoming hemorrhoids for me now. I wonder if they hear themself. Teaching self-advocacy and hearing from families – ah, excuse me, unmute us then.
  24. She is starting to repeat herself now as usual. This is when her protector should oh, I don’t know, train her and tell her to stop talking and give the floor to your students/learners in this training…Earth to Mr. Flint. I hope you are listening objectively here and can see your own errors.
  25. More repeating herself —yada yada…. we got it, you said this already, it is 9:53am now. Share the floor and the time Mr. Berning.
  26. She is now talking about self-auditing as an agency. I will party like it is 1999 when DHS EIDBI learns this lesson – audit yourself and take feedback without being defensive and cruel by silencing us. Practice what you preach, practice what you preach, practice what you preach.
  27. Now she is telling us about a MNABA conference. Why does EIDBI and the state Medicaid agency care about ABA conferences and what the heck does that have to do with Medicaid?
  28. It is now 9:57 and she asked people to put their questions into the chat. I wrote – I am from an oral society and will not write any questions, stop silencing us. Thanks, Idil. 

 

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

Idil – Somali Autism Mom & Trying to retire advocate.

Category: Autism Policy

Comments Off on Update on Disney and Autism Families Lawsuits

Alright – so, Disney known as the happiest place on earth became the unhappiest place when it changed it is reasonable accommadation policy for individuals with autism and other disabilities.

I have taken my son to disney more times than I can count ever since he was one. Then few years ago, Disney changed it is policy. Everyone regardless of their abilities or disabilities had to wait in their loooooong lines. Well, actually if you had a child with autism, they gave you a card, you took it to whatever ride your kid wanted. The ride people told you the wait time is an hour, two, etc. The last time, I took my son there, they told us the wait was for one hour and half and we can come then.

Well – what happened next was olalalalaaaa. My kid was not able to wait that long as it is often the case for many children with autism so he tried to climb up into the ride, had a behavior on the floor, and would not get up. We had to call for help; they helped us get out of Disney and that was the last time we were there. This was before the pandemic.

After their new rule, many autism families have sued and I have been following the outcomes. There have been over 40 lawsuits. Initially the families won, then Disney repealed, and lately as recent as last year in the fall, Disney has been winning. Ugh.

The last case was in front of the 11th circuit Federal court. This is sooo frustrating and is one of the reasons that I am big proponent of having judges who reflect the people they serve in disability and racially.

Here are some of the Disney/Autism Lawsuits:

https://wdwnt.com/2020/07/mother-of-autistic-son-loses-court-battle-against-disney-after-suing-them-over-disability-access-allowances/

https://www.law.com/dailybusinessreview/2022/10/07/11th-circ-upholds-disneys-bench-trial-victory-in-yearslong-ada-autism-discrimination-lawsuit/

Disney can’t dodge mom’s lawsuit after autistic son was barred from Lehigh Valley Mall store for not wearing mask

 

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

Idil – Somali Autism Mom & Retired Advocate

Comments Off on MN Medicaid Agency Finally gets it right – Let’s not party yet though – this is DHS after all

Alright – so, if you know me, read my blog or have learned the history of Minnesota’s Early Intensive Behavior & Developmental Intervention program, then you know dealing with DHS is a rollercoaster; Minnesota weather is more consistent than them. It all depends on who is in charge. Sometimes even if the commissioner or assistant commissioners are about equity, the middle management are almost never on-board with equity, diversity and equality.

It is tiring and exhausting to keep asking the same thing year in – year out. What is the same thing – have people who reflect us train families, providers, ask those who are from diverse communities to also train like you do the uppity whites, be fair, be kind, be fair, have compassion for autism families and their children, did I say be fair? You see the fiber and core of this agency is at best bias and at worst racist. This will never change because the oppressor never wants to share power, knowledge or resources with the oppressed.

I am technically retired, but DHS’ EIDBI staff are on my last nerve in how they lately have been having two white priviledged women drive this program without any transparency or accountability. And, how those in charge of them support them with a blind eye and a deaf ear without finding out the whole truth because they cannot handle the truth.

At any rate, finally, they had Back to school support and advice training for providers and you will never guess who was silent. Wait for it….drum roll pls…….Ms. Berning, you know the overrated and always protected white woman. They finally gave the ONLY person of any color or even with a suntan in EIDBI division (Ms. Vang) the opprotunity to drive this training. It gets better they finally asked actual people of color to train us. Wait what? where they drunk? They had three Somalis (one male and two females) and I could not see their faces because they did not tell us to watch or their cameras were off, and of couse, they silenced us to ask to turn the cameras on – so there might’ve been other minorities. It was like Mozart music to my autism mom ears. I got what they said, how they said it and thier tone was as welcoming as the spring in Minnesota when all of the snowbirds come back.

It remains to be seen if they will do this again. I do know one thing. Ms. Vang knows more in her little finger than both Ms. Hicks and Ms. Berning’s heads combined. If I remember it correctly, she was:

Yingya Vang

Committee Administrator

Human Services Finance and Policy Committee

House DFL Caucus

To be a committee administrator of any committee let alone health finance and policy is being as smart Albert Einstein. You have to know how to move and think fast, how to multitask, remember the kazilian bills that go through this committee and be fair to everyone which is something Berning and Hicks struggle with. Yet, EIDBI manager – Mr. Flint does not utilize Vang’s talents and calmness. It does not matter what kind of question you ask her or your comments, she remains calm under pressure while Berning’s face gets red and annoyed and Hicks tries to silence you. Vang is a breath of fresh air who should be given the same opportunity, training and responsibilies the two white ones have been given. In fact, in my humble educated opinion, she would be better at being the policy lead instead of Hicks.

To the minorities they have given a chance to speak who are Somalis:

  1. Hilib iyo cunto aan idiin soo bislaynay ayaad cunaysaan oo ku raaxasanaysaan.
  2. Ha iloobina dadkii jidka idiin furay
  3. Ha ogalaalina in nala kala qaybiyo
  4. Caruurta Soomalida ah ee maangaarka qabta iyo reerahooda u hagar baxa or caawiya.

 

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

Idil – Somali Autism Mom & Retired Advocate

Category: Autism Policy

Comments Off on Holland Autism Center Exploits Minority EIDBI Providers

Alright – so, Holland autism center is owned by an autism mom. Let’s start there, at least with the good. My son used to go to Holland years ago. This mom started the center because of her son. She rented a building that used to be a police station, hired a BCBA from Florida and started with her son and few others. We were one of those original few. As I have gotten to know her (Jennifer), I really liked her vision. She took her kid to an ABA center and did not like what she saw and how they were teaching her kid and treating him. So, she did the logical and humane thing to do – instead of asking someone else to give you a fish, learn how to fish so that your child has abundance fish forever. All good, right? I say yes.

As a result, I have gotten to know her more and more, we would go to have coffee, or just chat. She got to know other Somali autism parents, we would have lunch and hear her background. It is actually one to admire. She became successful from other businesses (computers) she owned. She got to know Somali autism families who believe vaccines caused autism and even invited Dr. Wakefield to Minnesota. Things were all good and dandy, until Rep. Kim Norton (dfl from Rochester) introduced a bill that stated the state of Minn should cover ABA therapy for children with autism who had private insurance. Boy oh boy, where to even start with that blatant racism. Taking public funds to help the wealthy while denying the same ABA therapy to low income autism families. What now?

Jennifer and others mostly white autism families sided with Rep. Norton. They testified for her bill, came in drones for it, packed committee rooms, and were relentless. In other words, Jennifer from Holland center was against what later became EIDBI, that is low income autism families getting ABA therapy. This is where she and I had to part ways. I remember she sent me an email once that said, if we stopped our advocacy, she will help our community. I told her no way.

So then why is Jennifer and Holland center exploiting mostly minority (Somali) EIDBI providers? Ain’t that a good question? They are charging them more than the reimbursement rate; they are – according to some providers making unreasonable demands, bullying them, and abusing them. They are also colluding with DHS staff by telling some of the EIDBI providers that they are backed by DHS EIDBI staff. What now? What the heck?

I guess as Michael Douglas said in his Wall Street movies – greed is good. Except, this is not wall street or a movie. It is about our children, families and community. It is about racism at its core. It is about taking advantage of the poor and low income. It is about the oppressor oppressing the already oppressed communities.

So, what is DHS – you know that state Medicaid agency doing about this? nada. Why? because no one holds them accountable. Why is Holland’s owner who at the very least should understand autism families’ pain taking advantage of minority autism families and EIDBI providers? Your guess is as good as mine. I have no idea. I expected a lot more from an autism mom even if she is rich and white.

Shame on you Holland and Jennifer. Imagine if someone did this to you. You need to stop taking advantage and expoiting minority EIDBI providers.

The above words do not reflect any candidate, agency, committee.

Idil – Somali Autism Mom & Retired Advocate

Comments Off on DHS keeps the job of a priviledge white woman while she becomes a state legislator – while it fires a black one – lovely

Alright – so, where do I even begin. Our community is akhas caleeg. Inaga uun baan is cuna, dadka kalena waan ka baqnaa. Qofkii walaalkiis loo xiiroow adna soo qoyso. DHS way eryeen gabar Soomali ah markay u baahnayd in ay fasax qaadato, laakiin gabar cadaan ah shaqada way u hayeen markii ay xildhibaan noqotay. This happens while we have the state house DHS committee a Somali to be in charge. Akhas caleeg Mohamuudoow. Dadkaaga u hiili oo cunsuurinimida ay DHS nagu hayso naga ilaali.

So, DHS fired and did not want to keep the job for a Somali person who worked at EIDBI while they kept the job for a white woman (Kimberly Hicks) while she became and wrote laws that affected them. How do you like them apples. Please tell me that is not double standard and pure discrimination.

Further, I have been told that DHS EIDBI will conduct its trainings without any input from autism families, providers or the public. They are to tell us whatever the heck they want and we have to accept it, digest, process it and swallow it. This is a publicly funded program that was advocated by the public for the public and we the public have no say. Unless we agree with the EIDBI team. Unbelievable. They get worse by the minute. They get more entitleed and priviledge by the second. Half the information that especially Ms. Berning tells us is wrong and we are not to have any questions or comments. No way. Further, she isn’t that good of a trainer. She repeats herself over and over, hogs the time then says – well time is up. And, we are to take that. No way. Of course, they always find a house negro who agrees with them. The idea of dividing minorities is nothing new. It is how this country was originally built.

Malcolm X said it best. take a watch.

Waan ogahay in ay jiraan Somali badan oo ila soo xiriira laakiin DHS ka baqa, waayo? fadlan barta xaqiina iyo xuquuqdiina oo iska celiya DHS iyo cunsuurinimadeeda. Maxaad la aamusan tihiin? Qof Soomaali ah haday Nicole ama Kim ahaan lahaayeen, waad cuni lahaydeen. Maxaad uga baqaysaan hada?

Walaalkaa oo la dhibaataynayo hadii aad aragid, ha aamusin ee u hiili.

 

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

Idil – Somali Autism Mom & Retired Advocate