Monthly Archives: November 2018

Comments Off on Update from the Lawsuit Against Disney by Awesome Autism Families

Alright – so, if you know me or follow my advocacy then you understand I think there are two ways to fight. One is through advocacy and inclusion and the other is via lawsuits. I have written about this which has also affected me. My son loves Disney but after they changed their services for people with disabilities including autism – it has been very hard to visit Disney. Children with autism often don’t understand the concept of waiting which is why so many ABA programs start with a wait target. Usually it is waiting for seconds or maybe minutes at a time. However, Disney’s new rule says – the wait for this line is an hour and half, we will give you a pass to use after the ninety minutes are over. I know what now? If my child can wait for 90 minutes for something, heck anything – then why are we even here. We could just stand and wait in the regular line with people without disabilities. This is similar if you told someone with no legs to be in a running competition with someone who has legs and the only accommodation you made was give them a wheelchair. The one with legs will still win because a wheelchair can’t compete fairly in this situation. Maybe this is not a good example but the point is the ability to understand waiting concept is one of the characteristics for autism and to make them wait for a ride when they can’t even comprehend the concept waiting is just cruel.

At any rate, there have been some amazing autism parents in various states such as California and Florida who sued Disney and some judge took on the side of Disney but some the parents appealed and there is a good news on this.  Also, if you want to keep calling Disney as I do and complain about their proper accommodation for people with disabilities particularly those with developmental disability, you can call 8185601000 and press one. You can tell them your experience with your child. The more of us call – the better.

Here and here are previous blogs on this issue. I am a firm believer that individuals with autism must be part of their communities including going on vacations and enjoying life as any other human being. I also believe it is right and fair to accommodate them when necessary and needed because of their disability. No one is perfect, but individuals with autism are perfect in an imperfect world.

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

Idil – Autism Mom

Comments Off on Minnesota State Senator’s New Autism Council Lacks Diversity and Different Views of Autism – Here we go again

Alright – so, Sen Abeler whom I consider a friend for some reason has become unrecognizable to me. He first appointed a white man (Wayne Rohde who believes dangerous anti-vaccine ideas) and two white women (Jean Bender & Sheryl Grassie) to select an autism council members. Have you ever heard of the saying – the leaf doesn’t fall far from the tree? Well, I have. This Caucasian trio picked a majority of members that resembled them. Now, what does this all mean? It means voices from minority communities will not be heard. What does this create? wait for it….it is original…..drum roll pls……oh yeah racial disparity. Does Minnesota have racial disparity? unless you live under a rock. Heck yes.

What is racial disparity? we always hear it on the news, see people suffering from it but what is it exactly. It is when two people of similar situations get differential treatment. For example, child A named Anderson applies to an ABA therapy agency and lives in Mpls. He is white and six years old with nonverbal autism. He is accepted and is assigned to a team of therapists to teach and help him. Child B named Ali applies to the same ABA therapy agency and lives on the same road in Mpls as child A. He is Black and is six years old with nonverbal autism. His parents are told, the agency simply does not have any room for him and has a long wait list but they are very sorry. Sound familiar? that is because it happens daily to children of color with autism in Minnesota and probably nationwide. Just google it as the list of examples is too long to list here.

Still confused about what racial disparity is. Let’s give another example. Child A, Donte goes to a public school in Bloomington Public Schools and has nonverbal autism. Child B Nelson goes to school in Bloomington Public Schools and has nonverbal autism. One day child A (Donte) has a behavior due to his disability, he is suspended for a week and sent home. Another day Child B (Nelson) has a behavior due to his disability, the school hires a behavior analyst to find the function of his behavior and his IEP team meets to figure out how to help him. You see this happens every day in Minnesota and this blatant differential treatment is what creates disparity. In other words, racial disparity is created by intentional discrimination caused by either conscious or subconscious beliefs.

Alright – now let’s go back to this Caucasian trio that cherry-picked Sen Abeler’s Minnesota Autism Council. Why didn’t they have more diverse folks representing African American autism parents, Latino American Autism parents, Native American Autism Parents, Minority-owned autism therapy agencies, etc.? Their reason ….wait for it…..seriously wait for it…….we could not find any. Gee, I wonder where I heard that before. Oh yeah every agency, school district, and their mamas use this useless and incorrect excuse. You see – people of color whose voices also need to be heard exist. But if the selecting committee does not reflect them as this vanilla group did not then they are left out and this creates racial disparity which comes from racial discrimination. Now, you don’t have to call someone the N word to be racist. You can even have black friends, work with black folks and still be subliminally racist or bias.

To me it seems this council is less welcoming than a white golf club in Alabama in the 1960s. The saddest thing of all is that Sen Abeler who is usually authentic and genuine is allowing it. 

I will say it had a lot of autistic folks who are able to communicate their needs and were highly intelligent which was probably the only positive thing in this secluded committee. But even this group needed to be diverse and have several minority self-advocate autistics unless of course, the cherry-picking trio could not find any.. yeah right. I am not buying this for a minute. They do exist but were not selected. In fact, three members from the Oromo community were denied. Why? you figure it out. If it selects like a duck and acts like a duck it is a bleeping duck.

There were also members from another all-white Alabama 1950’s golf club. I think they call themselves ATAM or something. They represent all white ABA therapy agencies. How Minnesota nice! By the way, this group testified against the last autism committee in Minnesota by a Bill from the queen of autism disparity previous state legislator, and sadly current mayor of Rochester – Kim Norton. Melissa who is with ATAM testified and I remember I asked why. Her response was – I don’t know we were told by Norton to do it so I did. I am still in shock by such a gang mentality response.

This secluded council also has few folks from the previous autism task force.  Mr Trahan who if you remember was adamantly against Minnesota covering ABA therapy for low-income autism children via Medicaid. In fact, he and I testified on the opposite sides in a house committee. He was for the coverage of taking $20 million dollars from the state health and human services budget to subsidize private insurance companies to cover ABA while low-income Medicaid kids got nothing. And, I testified for what now became EIBDI. Back then it was 1915i Medicaid autism waiver. Clearly, we won and the private insurance coverage which Ms Bender (from the Alabama golf club trio) also wanted, in fact, the entire autism task force except for health plans rep (Dr David G) wanted but it failed. Boohoo, cry me a river. And the low income or Medicaid ABA coverage passed at 1am on a rainy Thursday night in May of 2013 with just me and other Somali community autism parents and community member’s support. Mr Trahan said something that stuck in my mind. “let’s make Minnesota a good example for other states to follow”. That sounds good on paper but Minnesota must first stop being so darn racist and having so many racial disparities. We are all created equal and the notion that anyone is better or superior to anyone else is wrong and reprehensible. I will say this – Mr Trahan has lots of good ideas as I am someone that believes in giving credit where credit is due unlike so many hillbillies in Minnesota who take our ideas and credit themselves. I like his ideas of training law enforcement about autism. I also like how he fought Mayo to cover autism therapy. He would be cool if he just walked on the ground and came off his high horse by realizing a person is a person is a person irrespective of their views and it is ok to disagree on things because we have different experiences and backgrounds. And, you don’t have to like me to validate my ideas.

There were state agency representatives in this council, although I did not see county representative, public schools representative, charter schools representative nor health plans representative. I wonder what the exclusive trio’s reason for not getting those folks is.. I bet they couldn’t find one county person from 87 counties. Lovely! Let’s start with the village idiot from the health department who I can say without hesitation is racist. Here is why. A few years ago, I and other Somali autism parents advocated in HRSA (look it up if you don’t know who HRSA is) for an autism grant. MDH was going to apply for this funding and wanted the Minn autism task force to give them a support letter. All good right. Hold on to your seat, it is a bumpy ride. Ms Dalbec writes the application grant and I ask her to write in there that the funding will be shared with communities of color parents and agencies. She says no and I say well then I will not sign into the letter from the task force and I will let HRSA know you are against equity and equality. So then, the all mighty self-entitled Mr Trahan gets mad and says we are writing a support letter from all of the members. I tell him to take a flying leap and that he does not speak for me and I will not support this letter unless there is a written language into the grant for people that look like me will benefit from it. If you know the history of autism in Minnesota then you know how this ends as I am not going to repeat it because I have already blogged about it then.

We again prevail because HRSA tells them to write the application in an inclusive manner and the governor’s amazing health policy person directs MDH to include the inclusive language I was asking. You see in this state and sadly in many states in this county, equality and equity happen with consistent and relentless advocacy which is something most elite whites can’t even comprehend because they don’t experience it.

There was also a representative from DEED, Abbie. Now, I have never seen Abbie say or do anything bias but she tolerates it. My gentle friendly advice to Abbie is something Desmond Tutu said “If you are neutral in situations of injustice, you have chosen the side of the oppressor. If an elephant has its foot on the tail of a mouse and you say that you are neutral, the mouse will not appreciate your neutrality”. Abbie speak up the next time the likes of Ms Dalbec or Mr Trahan want to dismiss or belittle the needs of others.

Then there was someone from MDE who I guess represents education and autism. I don’t know her at all and can not comment. But she was silent. I would ask her to work on how students with autism can succeed in school, not be suspended for having behaviors due to their disability and level four setting which is a gateway to prison for so many minority students especially black boys. Just look at Harrison Education Center in Mpls and 917 school district which takes students from Bloomington public schools and is a segregated George Wallace education setting. Better yet, just google the report from Minn dept of Human rights where 43 school districts were cited for suspending students of color and students with disabilities disproportionately. This really boils my blood and is one area I must advocate before I am fully retired.

DHS sent Jason. For those that don’t know Jason, I can describe him in one word – Mr Fantastic. I am usually not a big fan of DHS as you may have read in my blog posts but this guy simply rocks.

Oh, I almost forgot, there was someone from Univ of MN – well actually two. I think I will write a different blog about Jennifer Hall-Lande and Amy Esler and the Somali Community’s history with them. It is not pretty. When I think of white privilege, I think of these two and there are plenty of reasons for it. Stay tuned for my next post. I will also be blogging about this committee to see if they appoint diverse members or continue to be an exclusive and secluded white golf club in Alabama from the 1950s.

Another area I will write about is how the anti-vaccine group who now are part of this beloved exclusive autism group will interact with the state health department. Will Ms Dalbec say facts and research about autism and vaccines, or will she stay mute and let this group (who also, by the way, has divided and exploited the Somali community more than any other group) inject their crazy ideas into Minnesota’s state legislator? This is a fight I want to see. Well except when whites disagree it is not a fight. What do they call it? I am blanking out on it. Oh yeah…it is called a heated and passionate discussion. But when a minority person disagrees with a white person, we are called…. another drum roll pls…..difficult, angry, emotional – yada yada. My favourite is when two minorities disagree – guess what it is called? Think about it. This is going to be a fun ride, so many things to write about and so little time…Stay tuned! Title of my next post (The first step towards equity and equality for Minnesotans is to first accept and take responsibility for the states’ racial disparity and discrimination) You can’t heal if you are in denial, oh my Minnesota Caucasians are in denial. An addict can only recover when he/she admits he/she is an addict.

I am going to end this post with two more quotes from one of my heroes – Desmond Tutu..

I am not interested in picking up crumbs of compassion thrown from the table of someone who considers himself my master. I want the full menu of rights.

When these white trio kept saying diversity more times than I can count but lacked actual diversity in the committee they cherry picked, I thought of above the quote.

Another Tutu quote simply says “A person is a person because he recognizes others as persons”. You see if this caucasion trio recognized minority folks as persons whose voices are also important and must be heard then we would not be where we are today. Not only did they not see us as persons, but as usual they were defensive and arrogant about it.

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

Idil – Autism Mom

Comments Off on What Do The Huge Election Wins by Minorities in Minnesota Mean For Autism Families?

Alright – so, what a ride so many Somali Americans have had for the past year leading up to the last election. History was made by so many of them. I am extremely proud of them. I am sure it is not easy to run a campaign let alone win it. Congrats to Hodan Hassan who is a new state representative replacing Rep. Karen Clark. Mohamud Noor who won state representative replacing Ilhan Omar, Siad Ali who won again to be on the Minneapolis School Board and Ilhan Omar for winning to be a congresswoman replacing Keith Ellison who also won to be Minnesota state attorney.

So now what does this all mean for our community especially autism? I hope it means they will change the landscape of so many policies that have created disparity and discrimination. I hope they will write an autism legislation that looks in the cause of autism for Somali children and why it is higher in us. I hope they will change the current laws for how students are suspended in schools and what the consequences are for educators and school districts. I hope it means they will write into every funding from every state and federal agency to share and partner with underserved community agencies. I hope it means every dollar the University of Minnesota gets has attached policy that ensures resources are shared fairly with equity and students, fellows and faculty reflect the state’s diversity and talents. I hope it means judges appointed to Minnesota courts are as diverse as our state. I hope it means school districts are held accountable when they fail students of color. I hope it means the state legislature and state agencies’ staff reflect our state’s diversity. I hope it means current laws and policies are amended to ensure fairness, equality and equity for all Minnesotans.

I hope it means the state’s agency commissioners reflect the state’s diversity. I hope it means we all prosper and are given equal opportunities not with words, but with laws, policies, funding, appointments, resources and everything in between.

I hope it means the way DHS punishes minority-owned agencies are eliminated so that the rules are the same for all agencies irrespective of their ethnicity or race. I hope it means equality and prosperity for all. I hope it means Ken Martin and the DFLers don’t just come to our community during elections then drop us like a hot potato after they win.

Here is my wishlist for autism:

  1. Either the governor allocates funding or a legislation is written that looks into the cause of autism in Somali children of why it is high and more severe. Sadly, Governor Dayton’s health department or as I like to call them “the do nothing state health agency” did not do any autism research as Dayton promised during his campaign. 
  2. There is funding allocated through the governor via the department of public safety to do a thoughtful training for the state’s troopers similar to what an autism dad and officer of St. Paul police department has done. 
  3. The governor or a bill is written that protects children with autism from neglect and maltreatment when in autism therapy centres. Currently, there is none and our children are vulnerable. 
  4. We amend the current suspension laws for students with disabilities by getting rid of the language that states schools can suspend students up to 10 school days before they determine if the behavior is due to the student’s disability. This is wrong for students who have behavior disorders like autism and do not understand the concept of suspension nor cause/effect. The new language can say “students with disabilities can be suspended similar to that of their typical peers if their behavior was NOT due to their disability which is determined by the student’s IEP team”.
  5. Finally, any state and/or federal funding that goes to state/federal agencies (MDH, DHS, MDE, HRSA, CDC, NIH, etc.) must have language that states “resources will be shared and partnered with underserved agencies and communities”. Currently, mainstream agencies just hog the majority of the resources and communities of color are left out. 

While I only care and understand about autism issues and certainly do not want to be the Jackie of all trades, I give gentle friendly suggestions to our newly elected officials. 

  1. Keith Ellison must ensure the state attorney general lawyers and staff represent the diversity of the state. He campaigned hard in the Somali community and I hope he keeps his promises or at least we hold him accountable.
  2. Governor Walz who campaigned on unity and one Minnesota must ensure his commissioners, office staff and state agency leaders reflect the diversity of Minnesota.
  3. Funding that goes to the University of Minnesota must have some kind of accountability to ensure there is a collaboration with underserved community agencies, faculty &  administrative staff are diverse and reflect Minnesota. Currently, it does not. White liberals like Dr Amy Hewitt simply hog the resources and rarely nurture or hire researchers of color.
  4. While Gov. Dayton appointed few minority judges to Minnesota courts, it is clearly not enough given this states disparities in the justice system. Therefore, upcoming Governor Walz must ensure minority lawyers are appointed to be judges similar to how Rep Thissen was appointed to Minnesota Supreme Court and previous DHS Commissioner Jesson was appointed to Minnesota Court of Appeals. If you look at Minnesota judges, they are as white as vanilla and need to reflect the diversity of the state.
  5. I would also encourage young minority lawyers to run for county attorneys. Currently, there are 87 county attorneys and only one (Ramsey) is a person of color. This can’t be but sadly it is.

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

Idil – Autism Mom & Advocate

Comments Off on Principal Jaysen Anderson of Bloomington Public Schools – Not Surprising Complaint Results

Alright – so, I have written and will continue to write about my experience with Jefferson High School in Bloomington Public Schools. My son who has nonverbal autism was suspended by Principal Jaysen, teacher Kelly Morris and Special Director Jennifer McIntyre for having a behavior that was caused by the teacher for disrupting his daily routine. Additionally, the teacher denied my child his voice by not giving him his communication device thereby violating his civil rights. As a mom and as you can imagine, I was devastated. How can anyone suspend five days a child who can’t even talk back at them, understand what the heck suspension is nor comprehend cause/effect? If Bloomington Public Schools can do this to a child like mine, imagine how they treat other minority children. It turns out this district has a horrible disparity record and disproportionately suspends students of color.

The big question now is – what can be done about it so that they don’t keep creating these horrible statistics, what do current laws and policies say about suspending students with disabilities, and what happens to principals, teachers and administrators who create such discriminatory stats? Well – I am finding out that one of the main reasons educators like Jaysen, Kelly and Jennifer keep doing what they have done for years is because current laws and policies protect them. It is easier to suspend and/or expel a minority student than suspend or fire a white teacher. I kid you not. Here comes the hard part or maybe the easy part – what can we parents do about this. How do we advocate for a meaningful change that stops this blatant discrimination? First, let me explain what disparity or disproportionately suspending and failing students of color is. Every parent wants their child to succeed and learn in school. Children go to school to learn, be nurtured, to succeed, and to be supported. It is how their teachers, principals and administrators do their job in teaching, supporting and nurturing the children that create differential treatments which create disparities. In other words, when a white child does something wrong, a white teacher and administrator are more likely to support and help that student learn right from wrong by giving them advice, maybe doing in school suspension, calling their parents and helping them, etc. By the same token, when a minority student does something wrong, the same white teacher and administrators are more likely to suspend out of school or expel the minority child. This is what creates disparity. It is the differential treatment our children get by mostly non-minority educators. This is also discrimination that is often subtle and passive-aggressive. This type of differential treatment created the huge gap Minnesota has in suspension, graduation, expulsion so on and so forth.

As I said, current laws protect the educators more than they protect the students. I for one am determined to change this so that another child and family does not endure the pain and heartache we have endured.

I filed a complaint against Jefferson high school principal, Jaysen for violating some of his licensing board’s code of ethics which is the only thing I can do now based on current laws. Below is the licensing board for school principal’s response. As you can see Jaysen did not even get a slap on the wrist. So, why should he do any better next time? If people like this principal don’t get fired, suspended, etc. they are not going to do better for our children. Jaysen will more likely suspend more nonverbal autistic children, more minority students and will get away with it. Unless of course, we change the statute that governs this board, the rules for it and make this board more diverse by advocating the folks that appoint them. In other words, insanity is doing the same thing and expecting different results which is what I told this board in my response to their response.

Sept. 13, 2018

Dear Idil:

As you already know, the purpose of the Board of School Administrators is to ensure the highest professional standards of administrators through licensure, approval of preparation programs, rules for continuing education, and adopting, by rule, a code of ethics covering standards of professional practice, including ethical conduct, professional performance, and methods of enforcement. The Code of Ethics is found in Minnesota Administrative Rule 3512.5200.

The board has created a special committee of its membership called the Ethics Committee for the purposes of impartially examining complaints that involve possible violations of the  Code of Ethics.  The Committee is made up of seasoned and tested educators who have been appointed to the board by the governor for their commitment to due process, to justice, and a deep resolve to be honest at all levels. Claims of misconduct are investigated and considered individually to determine if there is sufficient factual evidence to support the claim. When investigating complaints, Minnesota Administrative Rule 3512.5200,  Subp. 4, mandates a due process for administrators by allowing them to be “represented by the administrator’s own counsel or representative at each stage of the investigation and hearing.”

Ethics Committee sessions are closed to the public. If the Ethics Committee concludes that a complaint does not merit an inquiry, the case is closed and is not moved forward. If the Committee finds sufficient evidence to conduct an inquiry, the affected administrator will be asked to provide the Committee with their account of the matter. Typically, the accused responds with the advice and counsel

of an attorney. After weighing all of the evidence, the  Ethics Committee determines if there has been a violation of Minnesota Statute 122A or the Code of Ethics. If so, the Committee recommends penalties to the full board.  If the Committee concludes there has not been a violation, the case is closed and the administrator remains licensed. The information you have provided to the Board is classified as private data pursuant to the Government Data Practices Act, Minnesota Statutes Sections 13.04, subd. 2 and 13.41, subd. 2. Such information is for the use of the board’s staff and the Attorney General’s Office in evaluating your complaint. At the Sept. 10, 2018, meeting, the Ethics Committee carefully reviewed the information provided to it related to the complaints against Jaysen Anderson and the potential violation of the Code of Ethics for School Administrators outlined in Minnesota Statute 12.z.A and Minnesota Rule 3512.5200. After examining all of the evidence, the Committee has concluded that Mr. Anderson remains a licensed school administrator. Although I am severely limited by the Minnesota Data Privacy Act on what I can share with you pertaining to your complaint, I did want to let you know that at the meeting, the Ethics Committee did, as we do for most of the administrators we work with, offer some ideas to Mr. Anderson to consider as he strives for continuous improvement.

 As you know, the Board of School Administrators does not have the authority to change an administrators ‘ employment status or force a district to take certain employment-related disciplinary action against a licensed administrator. The Committee recognizes the difficulty of understanding the fine line between questionable decision-making by administrators which is governed by the local school board (for charter schools, it’s the school board and the authorizers) and substantiated ethical violations which are under the Board of School Administrators ‘ jurisdiction.

With respect to ethical violations, the Committee considers this matter closed. Please know that I am very sorry that I am unable to share additional information about the Ethics Com committee’s decision or its deliberations due to the Minnesota Data Privacy Act. I know you care deeply about the education in your community. While this decision is not perhaps what you had hoped, I can assure you that this process and the attention brought to the issue you raised, almost

always helps administrators make improvements which, in the final analysis, helps make schools better for Minnesota school children.

Thank you for contacting the Board of School Administrators.

 

Students with autism are sadly suspended, segregated and mistreated by many school districts and we need to fight this via policy advocacy and through the courts.

Data from The National Autism Center

Abuse of children with special needs in public schools

Special education teacher accused of abusing nonverbal students. This is heartbreaking to me as my son has nonverbal autism and I have been told that his paraprofessionals have neglected him while his teacher did nothing and in one occasion denied him his communication device.

 

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

Idil – Autism Mom & Advocate

Comments Off on Delta Airlines – The Friendly Skies For Children with Autism and Their Families

Alright – so, The holidays are around the corner which is when families travel and take vacations. Many families who have children with autism avoid flying because they are unsure how their children will respond. Often autism families don’t go on vacations fear of travelling and how their children will react at the airport and in the airline. I remember once travelling with my son to Los Angeles, it was too overwhelming for him. I wish I knew about this program because I would’ve eased him into flying until he was comfortable. Often children with autism need to see things and places more than once to feel comfortable. To ease this anxiety and stress associated with an airport visit and flying, the Metropolitan Airports Commission and others have teamed up to create the Navigating MSP Airport. The program includes monthly events, all designed specifically for individuals with autism, that guide families through the steps of an airport visit, from walking in the door to finding their seats on a plane.

During the Navigating MSP Airport event, families will have the opportunity to familiarize themselves with airport and travel procedures. Children will practice entering the airport, obtain a security pass, go through screening at a TSA security checkpoint and walk through the airport to a boarding gate. To culminate their experience, children and their families will board an aircraft and find their seats. Please note that the aircraft will remain on the ground.

In addition to preparing families for a positive travel experience, the Navigating MSP Airport program also will provide a valuable training and awareness opportunity for the airport staff, airline and TSA personnel to learn how to accommodate children with autism and other disabilities.

Families are invited to participate in any of the Navigating MSP Airport event sessions, scheduled for the first Saturday of every month for a fun and practice run while learning from airport personnel what works and what doesn’t work to make travelling experience efficient and less stressful. I think it is very important to take children with autism to vacations and exciting places. Always let the airline crew know ahead of your child’s diagnoses and needs. Ask them to let you sit near the front so you can get in last and get out first to avoid sensory overload when everyone stands in the airline. In order for our kids to be integrated into their community and society, we must take them everywhere we would typical children. It will take patience and practice which are two qualities autism parents have. Even small steps such as taking our kids to the malls or grocery stores are a good start.

Click here for more information. Additionally, TSA Cares can help children who may get overwhelmed with airport noise and crowds. Call them to find more information.

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

Idil – Autism Mom

 

Category: Autism Policy