Monthly Archives: June 2018

Rep Liebling and Previous Rep Norton Have Competition In This Year’s Election – How Owesome!

idilabdull | June 21st, 2018
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Alright – so, Kim Norton in my humble little opinion was the queen of autism disparity when she was a state legislator in Minnesota. She has written so many bills to list here that wanted to give more butter to the buttered up while screwing with low-income autism families. I kid you not. Norton was one of the reasons that we as Somali autism parents advocated really hard because all of her legislations wanted to give millions of dollars to the wealthy autism families while giving almost nothing to the low-income autism families who we know are disproportionately minorities. To make a long advocacy work short, we have defeated her disparity creating legislations in every corner and at every session. Actually, when the R’s were in control, her bills would never come up in any committee even for a hearing, but when Huntley or Liebling were in charge – her bills would pass those committees. Luckily, we were able to advocate in the Senate and in conference committees and defeat them in the end.

Then Norton retired from the Minn House of Reps and for some reason decided to come back this year and ran for mayor in Rochester Minnesota. Drum roll please…..there is a minority person running against Norton for the Rochester mayor position. Ahhh, this is Mozart music to my ears. Liebling on the other hand wanted to run for governor of Minnesota then changed her mind and wants to run again for her seat at Minn House of Reps. The good news is there is a Somali running against her. Yep, it does not get better than this.

Norton and Liebling have been very difficult in our autism and equality advocacy journey. I am not going to write all of the horrible things they did as that would take days to complete, but in a nutshell, they have always voted against anything autism that enhanced or helped minority children with autism. They voted to eliminate the Minn autism task force (don’t worry – it didn’t work because we defeated this bill in conference committee) because we wanted equality, they tried to silence and eliminate our voices. In all of their efforts, we have defeated them in every corner and none of their bills passed in the final legislation which is good. And, now they want to come back and create even more horrible policies. I think we need to come out and vote against them because our children’s future depends on it.

I ask the voters in Rochester where there are a lot of Somalis to please vote for Regina Mustafa to be the next mayor of Rochester. We also need to come out in high numbers and vote for Abdulkadir Abdalla who is running for Minn House District 26A in Rochester.

As Somalis and in general as Minorities, we need to use our voices for the betterment of our lives and that of our children. One way of doing this is having those that reflect us at the decision-making table. Disparity in Minnesota is so high because we are never at the table.

Update – June 29, 2018:

Sadly, Abdulkadir told me that he withdrew and is not running this cycle. Bummer. I am hoping, he comes back next time in couple of years. The good news is we can still beat Norton and not allow her to be the next mayor in Rochester, MN. Please get out and vote for Regina Mustafa to be the next mayor in Rochester and let’s defeat Norton.

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

Idil – Autism Mom and Advocate

Category: Disparity & Politics

DHS Proposes Changes to Autism Therapy

idilabdull | June 3rd, 2018
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Alright – so, Minnesota Department of Human Services (DHS) held a meeting with autism therapy providers and few autism parents last week. DHS wants to propose changes to the existing autism intervention statute that governs early intensive behavior and developmental intervention (EIBDI).

I think this is a good idea. Some of the proposed changes are the qualifications for level one therapist. Other changes are agency responsibilities and parent rights. According to the Minnesota Department of Education (MDE), there are over eighteen thousand children with autism. Many of those are not getting any autism therapy interventions and we need to have the capacity to help these kids and their families.

I mostly agree with the changes DHS wants to make. I also agree with their parent rights proposal. I would just add where the family can go to appeal if they disagree with the provider’s treatment plan. I would also like to see DHS engage more with families and help them understand their rights and responsibilities. I would like DHS to ensure providers understand they can’t just discharge the child for no reason. There must be a reason with data and facts, the family must be part of their child’s clinical team as equal partners and there must be a transitional plan in place for the child.

In other words, we don’t want these blood sucking and greedy providers (not all of them) to just discharge kids because they feel like it. The appeal process must be clear and easy to understand by all parents including minority families or those who may not understand the legal lingo of the appeal process within DHS. As an autism mom who used DHS’ appeal process – I strongly recommend DHS help parents learn and understand this complex system.

I have seen some autism therapy providers discharge children who were five years old and said the child was too old, I have seen kids discharged because they were nonverbal, lived in poor neighborhoods, the parent asked too many questions – yada and more stupid yada reasons.

I have seen DHS issue corrective action against some of those providers telling them they were wrong and violated Minn statute that states person-centered and family friendly services. I have seen the Minn Disability Law Center and the Minn Ombudsman’s office defend autism families who have been screwed by autism therapy providers. I really think DHS needs to be a little less provider friendly and a lot more child/family friendly. After all it is the child and their family who need the services and treatments.

Another area where folks had a lot to say was DHS’ new online CMDE and ITP forms. DHS changed this end of last year without any parent/provider and stakeholder input. Obviously this was not a good move and we complained to the Centers for Medicare and Medicaid (CMS) who pays half of EIBDI services. Additionally, the EIBDI statute clearly states DHS needs to engage with stakeholders before it makes changes. Additionally, it put extra steps that many low income autism families would not be able to have such as having access to the internet. Not all autism families have access to the internet and the Medicaid agency can not demand that. We have since then negotiated a more appropriate and doable process.

Overall, I think DHS autism division is getting better in serving children with autism and their families. They are trying to be more diverse, translating their services in various languages, and being in compliance with LEP federal law. Their staff are not cocky anymore and are actually walking on the ground. They have a new supervisor who I think is simply fantastic.

Here is the parent rights proposal and I would urge any autism parent/family to send their comments to DHS because if we don’t speak for our children no one else will.

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

Idil – Autism Mom

Category: Autism Policy