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Alright – so, Remember the movie the devil wears Prada with Meryl S. This movie reminds me of Dakota county. I know you are thinking – how and what now? Let me line it up.

Dakota county is arguably one of the wealthiest counties in Minnesota. It is also one of the prettiest. It has trees, lakes, (ok every county has lakes here), beautiful homes, and equally beautiful people (ok not the county commissioners, oh come on). So, what is the problem then? You see beauty does not buy kindness, compassion, or caring.

This county by far in my 15 years of doing autism advocacy has the cruelest, heartless, and unkind employees from their receptionist to their director to their commissioner. I have never seen anything like it. That is a mouthful, so let’s dissect it for a minute. We know that every county in this 87-county state has a biased and racist staff, usually low-level ones. Fortunately, the higher an employee is the more reasonable they become. Not Dakota; Garbage from bottom to top and from top to bottom. Not just racist and biased but heartless, cold, and cruel to autism families. How can anyone do that? How can anyone support that? Well, we know two of their commissioners Watkins and Halverson voted against what is now known as EIDBI when they were MN House reps. In other words, these two were never for autism families nor for equity even before they became county commissioners. I simply can not understand why we keep electing the same people and expect different policies.

I have seen where they just are pure devils with small vulnerable children with autism and their families. Seriously, I have never seen anything like it. How can a whole county be baaaad to the bone?

If you know me or read my blog then you know that nothing energizes me more than some bureaucrat who sits comfortably in an office and slept well last night pick on an autism family. That energizes me to my core and soul.

The question now is what can the state Medicaid agency do about this? who has the authority to ensure children with autism and their families do not get screwed by Dakota county? What role does or can CMS play? Where does the funding come from and what accountability measures are there for counties? So many questions – so little time. Oh wait, we have time as I will now add Dakota county to my whiteboard of yucky and yuckier who think autism families can be walked on, dissed, or dismissed. No way.

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

Idil – Somali Autism Mom & Advocate

Alright – so, where do I even start with this blog. My head is spinning. If you follow my blog or know me then you understand my love/hate, ok mostly hate with Minnesota health plans. Let’s explain a bit to anyone new to this blog. Over a decade ago, there was a black boy with autism who was denied autism therapy (ABA) by Health Partners. This child had Medicaid via Health Partners. In parallel, the MN state Medicaid agency (aka DHS) was approving autism therapy to mostly non-minority children with autism who had fee for service Medicaid. Long story short, this child’s family hired a local attorney who was also an autism mom. They sued HealthPartners and won. 

This was the gift that was going to drive my autism advocacy which we successfully advocated in both Minnesota and at the federal level to cover autism therapy for ALL Medicaid children with autism. All good, right. Not so fast. They always come up with another way to screw with our kids. In theory, health plans are supposed to follow the same rules as DHS when covering autism therapy. At least that is what I and others did back when Gov Dayton was here. We worked with state legislatures, DHS’ asst commissioner Nathan and CMS (this is a long video, I miss IACC but not the 8-hour meetings; the CMS coverage part is about 6:48 time towards the end) to ensure equity and equality. So we thought.

Now access is the law, but the rules are different similar to when black Americans were told you can vote but hold on now, you need to pass a difficult reading test. Low-income children with autism who have a health plan via Medicaid can now access the services but the rules are sooooo harder for providers. This means the provider will simply not take the MCO autistic kid which creates what? that is right more disparity, you know Minnesota’s middle name. I like to call it the land of 10,000 racial disparities.

DHS held what they are calling meet and greet events with health plans. So far two (BCBS & HealthPartners) have presented. What they said is yes we will pay for autism therapy but you will need to follow more difficult rules and processes than DHS. The provider has to get their practitioners enrolled with DHS which is good then get enrolled with the health plan which is also good. Wait for it, here comes the reading test. DHS will retro pay the services provided by the practitioners but the health plan will NOT. In other words, the agency will not be reimbursed for the therapy they have provided to the family. Now, what now? what the heck?

So this means the EIDBI agency will have to eat this cost. Tell me what agency can survive by not getting reimbursed for services they have provided? Why would any agency do this? who suffers? you guessed it – the child and the family.

I am soooooo pissed right now, I don’t even know where to start. I want to retire because I am old, tired, and have been doing this for 15 years. I do not see anyone else who wants to continue this thankless headache.

As I think through this. I really think fighting with crappy DHS or even the health plans is not the answer. We just need to write a law that says the patient has the right to opt-out of the health plan. Rep. Liebling had a bill about it this year, but Sen. Utke was against it, and it did not pass. I think we can revive this if we come at it from the patient and the provider’s perspective.

MCOs are simply not working for the member nor for the provider – period. They have unnecessary and different rules than DHS, are mostly rude, cruel even, and suck. Not a typo.

Here are my previous blogs on Medicaid paying for low-income children with autism. I mean seriously – isn’t Medicaid for the poor?

CMS approves autism coverage for the whole country!

July 8th, 2014 IACC meeting where this awesome news is announced. It is now 2022, and the fact that we are still asking for the same thing is why we have horrible and shameful racial disparities in Minnesota.

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

Idil – Somali Autism Mom & Advocate

Alright – so, The Minnesota Department of Human Services (DHS) is proposing changes to amend the current early intensive developmental and behavior intervention (EIDBI). See what they are proposing and my public comments below.

Idil Abdull, Somali Autism Mom & Advocate

Submitted at 8am on June 3^rd, 2022,

Comments for DHS’ proposed changes to EIDBI

Proposed changes

DHS is proposing to:

1. Remove authorization requirements and limit on billing units for the individualized treatment plan (ITP):

This would allow providers to bill for this service as needed without authorization. Currently, the limit is 60 units to develop the ITP, with the option for providers to request an additional 30 units every six months. By removing the limit on how many units a provider can bill and the requirement to request authorization, the provider will have the flexibility to develop person-centered treatment plans and ample opportunity for progress monitoring updates. It also will ease the burden on families who transition to a new EIDBI provider agency and request an updated ITP.

My comment: First, I would like to state that I have requested the restrictions that were put on the ITP back in 2019 to be removed. DHS came back with incorrect information stating that it was CMS and not them who can do/request the changes. The idea that DHS is now asking what I have suggested years ago speaks volumes of how deaf tone the state Medicaid agency is to the needs of children with autism and their families. I want CMS to understand this and keep it in their mind. DHS does not listen to nor validate our needs, concerns, and suggestions until I usually have to complain to you at CMS. This should not be the case; the state Medicaid agency should be willing and open to suggestions from stakeholders. I respectfully ask CMS to always look at DHS’ changes to EIDBI with an extra eye and always ask them how they involved families, advocates, and providers. Do not assume what the state Medicaid agency is telling you is accurate, please verify with stakeholders.

2^nd, I am confused about the wording in this change because it does not clarify what the end intent is. What I asked was to keep the 72 hours maximum we had before the 2019 code edits. Is DHS asking the same thing? Is there a limit to the initial ITP’s 60 units and 30 each six-month treatment plan?

2. Eliminate the Technical change form, DHS-6516 (PDF):

Currently, providers submit the technical change form to DHS to request an adjustment to an existing, approved service agreement. By eliminating this step, providers would, instead, request all ITP updates or changes directly through the medical review agent.

My Comment: I did not initiate this change and I am ok with it. I support. However, please note, that DHS did not consult with families, advocates, and providers on this.

3. To update the definition of “on-site” as it relates to high-intensity intervention (i.e., high staff ratio) services:

Currently, the QSP or Level I provider must be in the same physical location to meet the requirements of being “on-site.” DHS is proposing to update the definition of “on-site” to include that a QSP or Level I provider can be present and available via telehealth when appropriate to increase access to this essential service.

Note: A higher staff ratio is defined as two or more qualified EIDBI providers delivering the intervention to one person under the direction of an “on-site and available” qualified supervising professional (QSP) or Level I provider.

My Comment: This is fine, and I agree as it is sometimes difficult for the QSP to be present physically. Again, DHS did not consult with families, advocates, and stakeholders. They are always trying to shove down our throats their ideas without caring about how the people on the ground will be affected by their changes and rules.

The process to submit comments

Email comments to DSD.PublicComments@state.mn.us no later than 4 p.m. on Friday, June 3, 2022.

Additional input

In addition to the public comment period, DHS will consult with the EIDBI advisory group, providers, parents/guardians, and other interested parties before making these proposed changes.

Comment: I think DHS needs to do this before it suggests things. Talk with stakeholders, not at them, engage with us not dictate. Practice what you preach with action.

Thanks

Idil Abdull, Somali Autism Mom and Advocate

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

Idil – Autism Mom & Advocate

Alright – so, I also testified today at Sen. Abeler’s committee in MN State Senate. I sooo miss this committee. Anyway, my tiny little goal here is not much. It is simply DHS to train counties and empower them to ensure autism families and other individuals with disabilities understand what the heck EAA is, have choices, and are supported in a manner that is person-centered and cost-effective.

I do not think this is too much to ask. Akh, I miss Alex B at DHS. She would’ve fixed this and I probably would not even need to testify anywhere.

My favorite part of today’s testifiers – Kurt Rutzen; he is a disability advocate who brought us to tears. Then Rich N spoke, (what a small world) about mental health and law enforcement. I know rich well, he actually trained me on how to request public data. If it is about data laws, he is it.  He is part of an amazing group of people who are reporters and lawyers, my favorite people, seriously.

Minnesota State Senate

Human Services Reform Finance & Policy Committee

Chair – Sen. Abeler

Tuesday, April 5, 2022

Re: Committee Omnibus bill, the policy bill is SF 4165

Dear Mr. Chair and Members,

Many thanks for the opportunity to testify today. I have missed this committee’s friendly faces. First, I want to thank Sen. Abeler again for helping us pass EIDBI benefit years ago. Because of your support, there are thousands of children with autism being served under the EIDBI benefit.

I am here today to ask you to keep your original goal of always ensuring there is broad stakeholder input in EIDBI which would include autism parents, families, advocates, and providers. Line 187.7 states “in a manner that is determined by the commissioner.” Is it possible to add (in collaboration with stakeholders)? This will ensure DHS is not deciding on EIDBI services without getting input from families and providers. It has already been frustrating and difficult at DHS without Alex B there. I hope we make sure autism families are at the table with DHS and not on the table.

EIDBI Background: I thank Abeler and Liebling for adding a background study to be done before staff have access to these vulnerable children last year. Sadly, again because Alex B is not there anymore, DHS has put our children in harm’s way. They have allowed staff to have access to these vulnerable children before their background study is completed. DHS is now using a new vendor who seems to not have enough time for appointments, is taking longer to process applications, and costs more. Please tell DHS to not put our kids at risk. The person’s background study must be cleared before they have access to the kids. What if (God Forbid) a child gets hurt? What then?

I heard this committee discussing comparable situations for childcare providers which I agreed with. No child should be put in harm’s way because DHS cannot seem to find a good vendor to complete fingerprinting on time.

Finally, I would like to raise awareness of an area that is under HCBS – Environmental Accessibility Adaptation (EAA) This is a waiver service for people with disabilities including autism. As our children get older, we want to ensure they are living in their homes and communities. Currently, there is no guidance from DHS for the counties. Essentially, we have 87 counties and 87 rules. The assessments and installation of home safety modifications have no check and balance. They can cost thousands with no oversight nor support from DHS just letting the vendor decide. Vendors charge whatever they want, some even send their invoices after the fact without the family’s input or even knowledge and the county just pays for it.

When I asked DHS if they can offer support to families, they said we can complain to the Better Business Bureau. I am sorry but what is BBB going to do about a publicly funded waiver program? Again, because there is no Alex B there, it is easier to pull your teeth without anesthesia than to have a reasonable conversation that ensures people with autism and other disabilities are supported by DHS.

I am hoping you can ask DHS about this and find a way to make this program one that is based on person-centered, quality work and is cost-effective.

I have attached what is on DHS’ website for the EAA, as you can see there is no set rate and no guidance from DHS.

https://www.dhs.state.mn.us/main/idcplg?IdcService=GET_DYNAMIC_CONVERSION&RevisionSelectionMethod=LatestReleased&dDocName=dhs-286680#

Thanks so much as always!

Idil Abdull – Somali Autism Mom & Advocate

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

Idil – Autism Mom & Advocate

Alright – so, this has become an issue that I would like to advocate for or even have those in power understand what families and people with autism and other disabilities go through. Essentially, we have 87 counties and 87 rules and policies. DHS has a hands-off approach and counties are simply winging it.

Below is my testimony. Oh, I forgot – the county commissioners gave me 5 minutes. Whoa, what – whole five minutes. That is enough time to read a novel. I am so used to the 2 minutes from the state legislature. On a non-related to EAA, I stayed and listened to the county board meeting; I loved their discussion, their compassion, and how they interacted with each other.

Scott County Commissioners Board Meeting

April 5, 2022

Re: Health and Human Services – Environmental Accessibility Adaptation

Dear Board Members, Good Morning:

My name is Idil Abdull; I am a Somali autism mom and advocate. First, I would like to thank again my county commissioner Barb Weckmann Brekke for always supporting my son who has autism.

I have a son with autism, and we have lived in Scott County for decades. I come before you today to raise awareness about environmental accessibility adaptation (EAA). This is under the state waiver system that supports people with disabilities where the funds flow through the counties.

As you know, we want all people with disabilities to live in their homes and communities. The EAA is supposed to support this effort and make the person’s environment modified for their safety, health, and well-being.

I have encountered some difficulties with EAA in Scott County as commissioner Barb can vouch for. I am asking for a system that gives the person with the disability choices but also ensures cost-effectiveness and support for the family.

My son needs home safety modifications and just the assessments alone as no installation has been done thus far is thousands of dollars. When I contacted the county leadership, I was met with resistance. They said I need to just deal with it because things are expensive now and that is the way this county does it. I respectfully disagree with that.

As an advocate, I have helped other families in other counties. For example, Hennepin County does not just pay for whatever invoice the EAA assessor sends. First, they ask for the rate and total hours needed to complete the whole project, then they approve or deny it if it is not cost-effective all while providing choice to the person/family.

In parallel, Scott County just pays the invoice from the EAA assessor without approval or even knowing their rate and their total hours. This cannot be good for the person with the disability, and I can’t imagine being helpful for the county.

I am asking that Scott County reviews EAA assessments and then approves pends, or denies them. I am also asking the county supports and explain the process to the families as we are not experts in this.

I thank you much for your time and hope that you will consider my suggestions. At least, have conversations about it. The ultimate goal should be supporting people with disabilities in a manner that is person-centered with reasonable cost-effective measures.

Below is a helpful link that explains a bit more about EAA.

https://www.dhs.state.mn.us/main/idcplg?IdcService=GET_DYNAMIC_CONVERSION&RevisionSelectionMethod=LatestReleased&dDocName=dhs-286680#

Sincerely,

Idil Abdull – Somali Autism Mom & Advocate

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

Idil – Autism Mom & Advocate

Alright – so, today, Chair and Rep. Liebling had a hearing for low-income autism families and others to opt-out of MCO. We know that these blood-sucking insurance agencies have not been good to autism families. Even when we made the law and rule the same, MCOs have made the process so much harder that providers are simply not taking kids. MCOs take so much money from state and federal, yet provide no services. One member said today, there is no coordination because no services are happening to bloody coordinate. Ok, she did not say bloody but you get the point. In summary, I think DHS needs to have more data and facts for legislators which would allow them to write good laws and policies. And, we need to say bye-bye to MCO. It is not helping, yes enrollees should have a choice to opt-out and leave.

Below is my testimony:

Minnesota House of Representatives

Health Finance & Policy Committee

Chair: Rep. Liebling

March 21, 2022

            Re: HF 3363 – People should have the option to opt-out of MCOs

Dear Madam Chair and Members,

My name is Idil Abdull; I am a Somali autism mom & advocate, and I appreciate the opportunity to testify today. As you all know, Managed Care Organizations (MCO) are health insurance companies that contract with the state Medicaid agency to provide health care to low-income people in Minnesota including children with autism and their families.

The idea was to have cost-effective care that is driven by quality and compassion. Sadly, this has not always been the case, particularly in the area of autism. DHS’ medical director testified recently in this committee and gave you data that suggested the majority of low-income Minnesotans have MCOs. This is true for autism families. Children with autism who have MCO for insurance are not getting the services they need and qualify because the process is different and difficult for providers.

Let’s say there are two children who are both 5 years old and have autism. Child A named Michael Smith has Medicaid via fee for service and child B named Michael Smith has Medicaid through a health plan. They both apply to autism therapy agency C who will take the fee for service child because the process is easier, the reimbursement is faster, and there is plenty of consistent training on claim and authorization submission. On the other hand, the MCO has a horrible process or no process at all for claims, billing, authorizations, and reimbursement.

In other words, the provider will most likely take the child whose insurance is smoother and better. Keep in mind that both kids have Medicaid, but because MCOs are extremely difficult to navigate and work with, no provider will want to take that child. This is already happening in EIDBI. DHS has this data but refuses to end contracts with MCOs.

Now, there is something you can do about this because Medicaid should be Medicaid should be Medicaid. You can hold DHS accountable for the language in the MCO contracts to ensure the process and rules are the same. You can take away the ability to contract with MCOs if they do not do what they are supposed to do. I have seen this done by previous DHS administrations and governors.

I hope you call DHS and ask them to stop the double standard. I hope you tell MCOs they will not get public funds if they do not meet your standards.

For autism and probably other areas, MCOs are not meeting even basic standards. Autism families and others should have the choice and option to opt-out of MCOs without going through the lengthy process of smart medical team review and/or social security eligibility. These take a long time which defeats the purpose of early autism intervention.

You can read the below articles as a reference to when MCOs were blatantly discriminating against children with autism. Some families have sued them and won. I hope we do not wait for more lawsuits from families again. MCOs should not be allowed to behave this way while taking public funds that you all approve and have the authority to deny.

https://www.startribune.com/autistic-maple-grove-boy-wins-battle-for-treatment-coverage/127978098/

https://www.startribune.com/kids-with-autism-face-double-standard/119121669/

Thanks as always

Idil Abdull – Somali Autism Mom & Advocate

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

Idil – Somali Autism Mom

Alright – so, I have written about this issue extensively and have advocated for it in both the state and federal. Minnesota has passed an awesome law that will address the need to train and educate law enforcement in a manner that is culturally responsive. First, I want to give credit to the many many people in the autism community who fought like hell to pass this law. Noah M, Autism Soc of Minn, and others. Thanks for your relentless advocacy.

I first joined this effort years ago when my son had a behavior in the car in the middle of the highway.  I called 911 and the state trooper that came pointed a gun at us. Let’s digest this, I am from Somalia, arguably the most dangerous country in the world and I have never had a gun pointed at me. I had to then stay calm and tell the officer my son has autism and he is having a behavior. And that I need him to help me get out of the highway and into a safe area. After I explained this to the state trooper, he was extremely supportive and helpful. Then I asked him if he has had any autism training. He replied not much maybe a few minutes with all of the other disability training which is not even that much.

So then as I have always done, I have put on my advocacy hat and tried to figure out what can I do so that the next autism family does not endure such a scary moment. First, I called the Department of Public Safety Commissioner Mona D’s office and tried to find out their policies for training state troopers about autism. Her office was very responsive and after I gathered data and facts, I made an appointment with their training person (s). They were also very receptive and helpful. After several meetings and email exchanges, they said around 15 min or so can be added to the hundreds of state troopers that get trained annually.

Then I contacted the city I live and Mpls mayors to see if they can also train their officers about autism and how to help if they are called for help. My wonderful case manager for my son and I met with the chief of policy in where I live. I have to say, I loved meeting this guy. He too said they can add autism training to their procedures. And, wait for it… the best part…. drum roll please…, he watched the young and the restless and the Kardashians. I mean a police chief who is down-to-earth and approachable. It does not get better than that. Hold your horses – all mayors and police chiefs are not created equal, I also met with Mpls mayor Jacob F. Keep in mind, I knew this guy way before he was a hotshot mayor and he was at least reasonable. No more, when we met with him, he promised nothing and offered even less. He was distant and simply took our votes for granted.

Then I met the chair of the public safety in MN House Rep. M in an education advocacy meeting and started asking if a statewide bill that ensures autism training can be done because I can’t keep asking one city at a time as that will take forever and some of them may say no like Mpls did. By this time, others such as Noah and others were heavily advocating at the state capitol for this, so I joined. Finally, the law passed and was sent to the Minn Peace Officers committee. I called them to see if they can make sure and add cultural perspectives since all behaviors are embedded in their culture. Again, I was met with such a supportive and kind manner by their chair who is the chief of police in Mendota Heights. Now, it is out and it has been sent to me. It simply looks fantastic. It is inclusive, thoughtful, comprehensive, and really good.

I think the next step is to start this with the selected groups/agencies who will do the training and support law enforcement agencies.

You see if we see the glass as half full and figure out how to change our experiences into something usually some kind of a policy that helps the autism family behind us – then we all succeed.

Here is the statute if you want to read it. The POST came up with more comprehensive ideas of what should be included in the training.

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

Idil – Somali Autism Mom & Advocate

I have sent the below letter to IACC. I am hopeful the committee will address many of these issues for all autism families.

Dear IACC Chair and Members, 

My name is Idil Abdull, I am a Somali Autism Mom and a previous member at IACC. First, I want to thank you all for what you have done and continue to do for children and adults with autism and their families. I especially want to thank Dr. Susan Daniels whom I respect and admire more than I can express. I am grateful that the current US. HHS Secretary has appointed arguably the most diverse public members to IACC. I hope the fruits of your labor are fruitful to all autistic individuals and families.

I write to you today to raise awareness when children with autism become adults with autism. As you know the support, resources, and services for adults with autism are almost non-existence. While it is essential to have early interventions with the hope that children who receive early intervention need fewer services and support; there must be equal support and services for adults with autism. As you are aware autism has increased per the latest ADDM numbers.

I would like to suggest the following friendly suggestions or at least raise awareness. 

1. Expanding research for adults with autism and their needs such as housing, employment, and higher education.
2. Recommending more research for medications that can help adults and maybe even children with autism with their challenges and symptoms.
3. CMS to help states with ensuring home and environmental safety measures are good with concrete federal guidelines that must be followed to ensure the safety and well-being of adults with autism.
4. Asking the U.S Dept of Education to pressure Congress to fully fund special education.
5. Asking or at least adding IACC’s recommendations that IDEA’s suspension rules are amended; currently, children with disabilities are suspended similar to students without disabilities. Autism is a behavior disorder and we can not allow our children to be suspended for their behaviors as that is part of their disability. There must a provision in the IDEA law that ensures parents and the IEP team can state in the child’s education plan if he/she understands the code of conduct and suspension. In other words, if the student is profoundly autistic and does not comprehend cause/effect then kicking that student out of school is not helpful, and it must be notated in his/her IEP.
6. Having diverse autism individuals participate in all autism research by adding it as a requirement in the grant/funding application process.
7. More research recommendations and funding for non-verbal autism as these individuals have higher needs.
8. Asking HRSA to ensure the LEND programs attract, keep, and nurture minority fellows into the autism field of speech, ABA, OT, social workers, researchers, etc.
9. Addressing the pandemic and autism so that families, educators, and others have some guidance from the IACC and federal agencies in this committee. This includes vaccine equity and making the vaccines available to all autism communities, particularly communities of color.
10. Autism group homes – as parents age, some of our children will need to live in a group home. What and how can IACC assist states with this.

I thank you much for your time and for addressing the above issues, and I look forward to your solutions.

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

Idil – Somali Autism Mom

Alright – so, the Minnesota Department of Human Services (DHS) is supposed to be in charge and have cohesive policies and guidelines for all things human services. EAA – what the heck is it and why does it matter to children with autism and their families? As we know, autism is a developmental disability; one of the main challenges is behavior. Most not all children with autism are unable to regulate their behaviors. Hence, the need for behavior therapy. Most, not all children also lack safety skills. When our children are young, we (parents and caregivers) can usually handle their behaviors and safety needs. However, as children become young adults, we need to safely modify their homes and environment. That is when we (at least me) learn about EAA.

Remember years ago when we started advocating about ABA therapy and how MN DHS had zero rules, statute, policy, or any guidance for ABA providers. Actually, DHS just denied they even paid ABA therapy. They did – but only for wealthier TEFRA families. Eventually, we won with simple and persistent advocacy.

At any rate, I thought that was the wild wild west. Well, I take that back. DHS and EAA agencies are the real wild wild west. This time – it is different. DHS does not deny paying for EAA. They just have no concrete nor cohesive fair policies that ensure the individual with autism and/or other disabilities’ safety needs are met. These EAA’s make the ABA agencies look like mother Teresa. I mean, they are as cold as Minnesota snow, clueless as Rose from the Golden Girls, and arrogant as heck. It can take months even years to finish any safety project which defeats the purpose of safety if a person with a disability has to wait years. As much as I loathe most of these EAA agencies, I do not blame them for their boorish behaviors. There are 87 counties in Minnesota and essentially 87 EAA rules. The problem is DHS and it is inability to take charge by creating thoughtful policies with statutory teeth that everyone follows with timeframes, cost-effective measures, and most of all are built on a person-centered and inclusivity foundation. Is that too much to ask? I say no.

So, how does this whole EAA process work? who is in charge? where does the funding come from? and what can we (parents and caregivers) do about it so that it does what it is meant to do which is to ensure the safety and well-being of individuals with autism and other disabilities are met and are a priority?

Stay tuned for yet another advocacy journey I am about to embark on.  Though this time it will be different and perhaps more difficult because DHS has so many new leadership teams; most of whom I am not fond of. Seriously, I would like to retire and not keep going to the state capitol. It would be nice if the human services department simply did its job for people with disabilities without causing stress for parents.

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

Idil – Somali Autism Mom & Advocate

Alright – so, what the heck is the BACB board? who is on it? why does it matter to autism families and why the heck should we care?

Lots of questions and so many answers. Behavior Analysis Certification Board (BACB) is where Applied Behavior Analysis (ABA) therapists get certified. It has all white-board members. In fact, I don’t remember ever being diverse nor reflecting the autism community. Why should we care? such a good question. Let me back up for a minute and explain more about ABA therapy. It is arguably one of the most (if not the most) effective autism therapy there is today. It is a powerful method that teaches children and adults with autism functional life-long skills that enhance their quality of life and enables them to live as productive members of society.

I am a huge fan of ABA, so much so that I went back to school (at age 90) and got a master’s degree in it. I use this with my own son every day to teach and help him. It does wonders for behaviors, language, social, and self-care skills to mention a few.

We know that autism is high in our Somali kids in Minnesota. We also know that autism is high in this country and children of color get diagnosed later. All behaviors are embedded in their culture. Thus, the importance to have the board that oversees this to reflect the people it is supposed to serve. Now, ABA doesn’t just help autism families. You can actually use ABA therapy in companies, hospitals, daycare centers, and so many other areas. But, I only care and understand about autism, so I will concentrate on that in this blog.

At any rate, not only is the board for this wonderful therapy non-minority – but the few people there have been sitting in these seats for a long time. I think it is time to replace all of these vanilla board members with people who are diverse, kind, compassionate, and most of all approachable. As though that wasn’t bad enough, I have only seen less than five diverse certified ABA therapists. This can not simply be. The rules and guidelines of this all vanilla board must reflect our diverse communities and our families – full stop. They must be person-centered, family-focused, and culturally responsive.

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

Idil – Somali Autism Mom