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Alright – so, as Sen. Hoffman from Minnesota was trying to silence me in his little state committee, I was asked to speak at the federal level about autism. God does work in mysterious ways. When a tiny door like Hoffman’s closes, God opens a huge window like this.

Here is my written testimony. This is held by NIH and will be via zoom – phew as I would not want to fly to DC. It should be broadcasted on NIH’s website.

Idil Abdull – Written Comments

Adults with autism & Nonverbal/Minimally Speaking Individuals with autism

Federal Interagency Autism Coordinating Committee (IACC)

Dr. Gordon – IACC Chair and Director of the National Institute of Mental Health

Dr. Susan Daniels – Director Office of Autism Research Coordination, Executive Secretary of IACC, and Acting National Autism Coordinator, NIMH

April 4^th, 2023

Dear Mr. Chair and Members, my name is Idil Abdull; I am a Somali Autism Mom and retiring advocate. First, I want to thank Dr. Daniels for her support and guidance in the Somali autism community in Minnesota as well as all autism families across the nation.

I was lucky enough to be part of IACC almost a decade ago now, how time flies. We made a lot of progress back then and you all on the current committee have made even more progress. However, there are two areas that I believe we still need more work and support.

Let me start with adult services. My son is now twenty years old, he will be twenty-one in July of this year. There are almost no services for adults with autism in Minnesota and nationwide. Our children grow and become adults, but we as a nation are not ready for them. The system is simply not set up for adults with autism from employment to housing, to safety, and in between. One of my biggest worries is who will care for my son when I am no longer here.

I want to ask IACC members, particularly the federal agencies that oversee adult services to concentrate more on not just research, but on services and support for adults with autism. They will need housing that is person-centered and culturally responsive, and employment that is fulfilling and rewarding. They will also need to be safe in their communities including with law enforcement. We must make sure adults with autism are able to live and work safely in their communities with dignity and respect.

My second request is about the ability to communicate. As you may have heard, Somalis are an oral society. Sadly, most of our children, including my son, have nonverbal autism. In other words, autism is silencing a nation of poets who are known for their oral communication. I thank Dr. Kasari at UCLA and Dr. Helen at Boston University. We need more research into this area, particularly in teaching our kids the ability to communicate from their hearts and minds via spelling. I think PECS is fine, but those are pictures and do not give our kids the ability to communicate their true needs and wants. It is a limited system.

I ask IACC to raise awareness of the spell to communicate system, to have insurance companies and Medicaid coverage, and to ensure we are giving every individual with autism the opportunity to be able to tell and say what they want, what they need, what they are thinking and tell us their dreams.

I would give every organ in my body for my son to be able to speak orally. It is my hope that one day he will tell me his thoughts, wants, and needs. I would love to ask him and have him answer me why he likes to listen to 70’s music such as the song – ooh child, things are gonna get easier when we are in the car and Bette Midler when we are traveling out of state. You see Mr. Chair and Members, individuals with nonverbal autism are smart, funny, thoughtful, and want to live a happy, healthy, and safe life just like all of us do. I ask IACC to tackle these incredibly important issues.

With Gratitude
Idil Abdull – Somali Autism Mom & Advocate

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

Idil Abdull – Somali Autism Mom

Alright – so, where do I even start. There are thousands of appeals that go through the Minnesota Department of Human Services (DHS) appeals court annually. They have dozens of judges who decide the fate of so many vulnerable Minnesotans. We do not have to ask Jack or Jane that counties deny, dismiss and disregard autism families, especially communities of color. So, what is DHS and its judges doing about it? Nada, zilch, and nothing.

Commissioner Harpstead decided to ignore minority autism families willingly and purposefully. Under her leadership, more minority autism families have been screwed with than I can remember under any other commissioner. DHS judges are hired by DHS. They are simply lawyers who work for the agency. They are not judges who we can elect and unelect. In other words, they ultimately work for DHS and the commissioner.

I had the displeasure of listening and being dismissed rudely by a recent case. It was a child with both physical and developmental disability that Dakota County denied a developmental disability waiver. Let me explain this further; Dakota county denied a small Somali child born here who has both physical and developmental disability a waiver. Who the heck is supposed to get a waiver then? That is the million-dollar question that no one at DHS, county management, or county commissioners has been able to answer.

This parent and I went to every possible agency and/or person in a position of power and not one single person was able to help this child and family. Think about that for a minute.

We went to the Ombudsman’s office – their response was, go appeal and we can’t go with you. We went to the DHS disability division – their response, go appeal and we can’t help you. We went to the county commissioner – their response was let’s just ignore our voters. We even went to the chair of the health and human service who is a Somali in the House. We are still waiting for a response from him.

So we went to a DHS judge and appealed. First, DHS judge Raymond Wood is assigned to us. He sounded black but the liberal version of Judge Clarence Thomas, where they look like us on the outside but whiter than vanilla on the inside. Then he makes an appointment but never sends the time/date to anyone including the family nor the county. Third, without apologizing for that incompetent mistake, he makes another appointment and denies the family to have an advocate in addition to the Minn Disability Law Center person. Now, what now? yep, that is right. Denying the parent the right to have an advocate present during a hearing is person-centered and culturally responsive to a DHS black judge. How do you like them apples?

After mom keeps asking for me to enter the phone call and support her, he finally calls me and says – what is your name? I am thinking you called – you arrogant ??##@@ – I am not going to tell you my name. How about you tell me who the heck you are first. Who the heck calls someone and then says – what is your name. What world does this judge live in? la la land.

As that was not bad enough, Dakota county’s horrible and heartless gatekeeper – Mary Woodard tells lie after lie after lie. He soaks it all like a sponge. When the person from the disability law center tries to speak and ask mom questions, he immediately shuts her down and silences her. He then lets Ms. Woodard lie even more despite the fact we have emails and information that will cancel her lies. I have never seen anything like this even in law and order television show where things and stories are fake.

Ladies and gentlemen, this is what it is like to be a white woman. Ms.Woodard denies this child a waiver or another assessment. DHS allows this kind of behavior in publicly funded programs even when a Somali is in charge of DHS and the county’s pockets.

Ugh, this is incredibly frustrating and hurtful.

Chair Mohamud Noor:

Adigoo anaga noo eg, in hadana nala ciilo, oo nala cunsiiriyo waa nasiib iyo ayaan darro. Maanta hadii aadan dadkaaga u hiilin, goormaad noo hiilinaysaa? DHS iyo Counties adaa xukuma jeebkooda. Yay na ciilin adoo nool. Yaan ilmo yar oo autistic ah lagu jeestaynin. Yaan hooyo iyo aabo Soomaali ah laga oysiinin adigoo nool. Yaan nalagu dultumanin adigoo nool. Waa in’aad DHS iyo counties dhibaatooyinka an nagu hayaan wax ka qabatid.

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

Idil Abdull – Somali Autism Mom & Advocate

Alright – so, if you read my blog or know me then you are aware that I am not a fan of one Minnesota hoax governor Walz. I think he preaches sugar, practices salt and for sure divides our community. Divide and concur is an old tactic that sadly still works. He always finds one or two people who look like us but do not understand policy from poop to speak with. He takes a picture with them, maybe eats one or two sanbusa, befriends them on social media, and viola like magic – he is for us. Yay!

At any rate, state governors unlike the federal government have to balance their budget. This year Minnesota has lots of lots extra money and with that, the governor has a huge discretion on how that funding is used. Here is his budget for this year.

There are potentially 4 main agencies that can do something about autism.

Minnesota Department of Health, (MDH). Walz just appointed a black commissioner. I do not know enough about her to have an opinion. If you control F search autism – you will see it is mentioned only under cannabis. Autism is one of the conditions that a patient can legally purchase cannabis. That is it. No other autism is mentioned. Keep in mind, there are three areas MDH must do: Assurance, Quality, and Assessment. And, One Minn Hoax Gov fails autism families again. There is no autism research funding under its assessment charge. No funding for telling families about resources and services available which would be under the child and maternal health which includes children with special needs. And, definitely, nada under quality. The last time, MDH did anything about autism was Gov Pawlenty. You know, the party we minorities think they don’t help us.

If you control F search Somali – I think there is something about drug overdose. It is mediocre at best.

Minnesota Department of Human Services (DHS): This agency takes billions of the state’s budget by far. It employs more people than a small country. It is run by Commissioner Harpstead. North Korea is more welcoming than her. Under this commissioner, more black and brown employees have been fired than the previous 3 commissioners combined. So many providers of color are screwed with probably weekly. DHS is in charge of services for the elderly, disabled, and the poor. For autism, DHS has two things.

1. To add Native American-related items which are probably needed.
2. To study licensure for EIDBI is not a bad idea, but if history is a pre-indicator of the future, this is to squeeze and close minorities, especially Somali autism centers. We know that DHS disproportionately screws with black and brown providers. From what I understand, there is no Somali employee at SIRS or provider division, or in the EIDBI area. In other words, unless we fight back, DHS will without a doubt go after Somali EIDBI providers.
3. DHS did not add any grant or funding to ensure autism families are aware of services and available resources. Nothing was added for positive behavior support or person-centered training. Sad but not surprising.

MDE – education department has a black man heading now. I do not know him enough to have an opinion. From what I can tell, he seems to care about non-exclusionary discipline and the education gap. We will have to wait and see if it is just hot smoke or if MDE will do something about school districts that disproportionately fail and suspend students with autism/disabilities as well as black/brown kids.

DEED – I don’t have enough knowledge about this agency to have an opinion. I do know they are supposed to help our kids with finding employment. As my son gets older, I guess I will have to learn about DEED.

For the rest of the agencies, I hope people read the budget and proposed policies to see how Gov Walz did. In my opinion, he failed our autism families again. Sadly, no one in the community cares enough to tell him including our elected officials.

If you remember, just before the election, Gov Walz used magic words like equity and racial disparities among blacks to have meaningless zoom meetings coordinated by MDE’s asst commissioner who is a black woman. My guess is it was to get the black vote. Gee, I wonder where I heard that from.

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

Idil – Somali Autism Mom & Advocate

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 [email protected] 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