E-DEMOCRACY | Please VOTE NO on HF 181 - Autism Therapy discrimination Bill

House File #181 was introduced by Rep Norton (DFL) from Rochester, MN on January 30, 2013. This is the same legislation that was introduced for years now with different numbers and failed year after year in both DFL and GOP held Committees with HF359, HF204, HF1079, SF1071. It had more number changes than P. Diddy had name changes. The numbers changed, but NOT the language, it is still the same old tired, bias, prejudice and non research based language that logical legislators voted NO before. Further, NO other state in the country out of the 37 states with autism coverage have this kind of language.

Note; while 37 states have private autism coverage only 9 states have Medicaid autism coverage. (think about the level of racial and economic disparity that has created. Why would Minn add to an already boiling injury) .

Here is why it failed and we hope it does again this year:

1. It says Autism therapy should ONLY be covered for children that have private state regulated insurance which is less than 30% of the market that leaves more children than it includes.

2. It leaves out low income autism families many of whom have Medicaid (Medical Assistance). Wrong in every sense of the meaning of the word!

3. It leaves out children whose parents work at Target, Walmart, Best Buy or any big self funded insurance company. This includes the engineer at 3M, the overnight cashier at Walmart or the sales person at Best Buy.

4. It gives over-reaching power to few greedy providers without any factual research from any double blind study anywhere in the country or the world. For example, no research that is objective says 40 hours of intensive therapy is good for a 2 year old, 5 year old, 10 year old and a 20 year old. See below links from IACC (Federal Autism Advisory Committee) recently published national strategic plan for services research policy which is what Congress and the Sec of U.S Health Human Services use as a guide for all autism issues in the country.

Why is Minn coming up with untested, unproven and expensive coverage. Who exactly benefits from that, certainly not the children because research should drive what, who and for how long therapy is provided. HF181 is being driven by expensive, elite and racist lobbyist and their legislative puppets without any base for scientific based research and equal justice by choosing losers and winners. Shouldn't all children be winners?

5. By taking comments and advice from overpaid and arrogant lobbyist makes Governor Wallace (DFL of AL) seem like an inclusive angel. Their goal is autism disparity today, Autism disparity tomorrow and Autism disparity forever. The sad thing is - this is 2013 and we have a Black President. This kind of exclusive arrogance is why disparity for Black and Latino autism kids is extremely high. The current language of this autism coverage legislation HF181 only promotes and enhances deliberate discrimination and more health inequity for the have nots.

6. It mentions Lovaas therapy as a method of autism therapy. Dr. Ivar Lovaas did a study on autism and ABA which has never been repeated whereby the same results were gotten. In addition, there are many kinds of ABA such as VB, etc and I don't see those folks names being called as the actual therapy.

This is the provider who tried to tell Minn dept of Human services (DHS) it is medically necessary to bill for three different therapist at the same-time, for the same child and claim it is medically necessary whereby a judge in Ramsey district court for the unth time ruled wrong and not medically necessary, nor is it allowed by DHS, CMS or Congress. See below articles.

For instance, who the heck gets 3 bills when you go to a clinic (from the receptionist, nurse and doctor) You get one bill - it is called cost of doing business. This provider is so greedy that AIG JP Morgan look like Mother Teresa angels.

7. It leaves out other equally helpful therapies that are based on developmental and play approaches such as EDSM, FloorTime, etc. Well - actually I heard because they too have lobbyist and the funding to fight, their language was just added yesterday.

8. It leaves out people that are public employees and have children with autism.

9. Those deciding and helping Rep. Norton are as white as Minnesota ice and lack diversity and inclusion from racial and socioeconomic lower families. This kind of tactic is why we have such high health disparity in Minnesota - one of the worst in the country. I am beginning to see this is not an accident, rather subtle policies that deliver disparity all while giving us a hug, smiling and saying we care. What a load of crap - if you don't mean your words then please don't patronize us.

10. Rep. Norton wants to dictate, mandate and order private companies to pay for services it is not willing to cover for its own patients of Medicaid who are the most financially vulnerable and can not by any means afford autism therapy. That is like going to your neighbors house and demanding they feed their kids and clean their house, while your own children are starving and your own house is dirty. Isn't this the ultimate elite way to write any legislation? I would say it is DOUBLE STANDARD access to health care services at its best.

Rep. Norton, why not have adult conversations with families from North Minneapolis, South Minneapolis, Mankato, St. Paul, Blacks,Whites, Hispanics, Health Plans (since you want to order them around) and Minnesota department of human services so that you get a consensus whereby the children win not some arrogant and ignorant lobbyist or their employer?

I urge Committee Chairs in both the house and the senate and others to please ask Rep. Norton to go back and work on this legislation in a holistic and fair manner. Because right now it sounds disparity today, disparity tomorrow and disparity forever. And, that is wrong in 2013 and a Black President.

http://www.startribune.com/lifestyle/health/119121669.html?refer=y <http://www.startribune.com/lifestyle/health/119121669.html?refer=y> http://iacc.hhs.gov/events/2013/012913/iacc_sp_2012_update_012913.pdf <http://iacc.hhs.gov/events/2013/012913/iacc_sp_2012_update_012913.pdf> http://iacc.hhs.gov/events/2013/full-committee-mtg-materials-jan29.shtm <http://iacc.hhs.gov/events/2013/full-committee-mtg-materials-jan29.shtm> http://www.postbulletin.com/news/local/state-is-auditing-autism-centers-including-rochester-one/article_8a8badba-fbb9-596a-be0b-2f86d00576ff.html <http://www.postbulletin.com/news/local/state-is-auditing-autism-centers-including-rochester-one/article_8a8badba-fbb9-596a-be0b-2f86d00576ff.html>

Idil - Somali Autism Mom. (please vote on the side of fairness and equal access for all) Permalink: blog.saafmn.org/2013/02/01/please-vote-no-on-hf-181---autism-therapy-discrimination-bill.aspx <http://blog.saafmn.org/2013/02/01/please-vote-no-on-hf-181---autism-therapy-discrimination-bill.aspx>

See E-Democracy discussion thread here.


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House File 181 is long overdue and much needed

House File 181 is long overdue and much needed to end the discrimination against those individuals with autism. The bill has general, comprehensive language that is endorsed by Autism Speaks.  I feel there is a lack of understanding of how health insurance works in Minnesota. Let’s take some time to understand the options individuals have for insurance in our state.

  • If you are low income you can apply for Medical Assistance (MA) through the Department of Human Services (DHS). The state then purchases a policy for the individual from Health Partners.
  • If you are self-employed and above the income threshold for MA you have to get your own policy and pay for it.
  • If you work for a company that supplies you with health insurance, your employer typically pays for a portion of your premium. There are really three ways an employer can provide you insurance. 1) They are based in Minnesota; they purchase you a policy from a state insurer and are mandated by Minnesota legislation. 2) They are not based in Minnesota; they purchase you a policy from the state they are incorporated in and must adhere to that states mandates. 3) They are self-insured plans, and the company must adhere to ERISA requirements.

Now, if your child has Autism and you get denied coverage for services – you have two options to get coverage. You apply for TEFRA, which is fee-for-service state paid coverage for individuals with disabilities or you apply for MCHA, which is a high risk insurance pool for those who have been denied coverage in the state. TEFRA is FREE for those who already are on MA, it is just some paperwork to get the coverage in place. If you do not qualify for MA you can still get coverage through TEFRA on an income based sliding fee based on parental income (up to 13.5%). You could also apply for MCHA and the fee is approximately $275/mo.

Now, let us address Idil’s concerns one by one:

  • It says Autism therapy should ONLY be covered for children that have private state regulated insurance which is less than 30% of the market that leaves more children than it includes.

FALSE. The bill can only address policies purchased in this state. It cannot dictate to companies who are incorporated in another state, nor can it dictate to ERISA plans. However, historically speaking ERISA plans follow suite of what is mandated in the state. Therefore if HF 181 were to become law chances are all those self-funded plans would provide coverage. Mandating state cover is just a first step and it is a step in the right direction.

Furthermore, MA already covers autism treatments through TEFRA (all you need to do is fill out some paperwork and it is FREE for MA recipients). MCHA already covers autism therapies after a 6 month waiting period and the State Employee Group Insurance Plan (SEGIP) also covers autism treatments. The bill states that these plans must maintain current coverage. Additionally federal employee’s health plans cover autism therapy.

  • It leaves out low income autism families many of whom have Medicaid (Medical Assistance). Wrong in every sense of the meaning of the word!

FALSE. MA already covers autism treatments through TEFRA (all you need to do is fill out some paperwork and it is FREE for MA recipients).

  • It leaves out children whose parents work at Target, Walmart, Best Buy or any big self funded insurance company. This includes the engineer at 3M, the overnight cashier at Walmart or the sales person at Best Buy.

FALSE. HF 181 does not intentionally exclude it self-funded plans. Self-funded plans are governed under ERISA, which is at the federal level. Again, if you look at other states that have passed similar legislation, ERISA plans tend to follow suite of what is mandated in the state.

  • It gives over-reaching power to few greedy providers without any factual research from any double blind study anywhere in the country or the world. For example, no research that is objective says 40 hours of intensive therapy is good for a 2 year old, 5 year old, 10 year old and a 20 year old. See below links from IACC (Federal Autism Advisory Committee) recently published national strategic plan for services research policy which is what Congress and the Sec of U.S Health Human Services use as a guide for all autism issues in the country.

FALSE. There are over 500 published studies of the efficacy of ABA/IEIBT/Lovaas Therapy. In fact, it is approved by the American Academy of Pediatrics, the U.S. Surgeon General, the National Institutes of Health, and many others. In particular:The U.S. Surgeon General states that "30 years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and increasing communication, learning and appropriate social behavior."The National Institute of Mental Health concludes that, "among the many methods available for treatment and education of people with autism, applied behavior analysis (ABA) has become widely accepted as an effective treatment."The National Institutes of Health concluded that the efficacy of ABA therapy is "significantly greater" than alternative interventions for children with autism and that behavioral treatment such as ABA therapy is an "effective" treatment for autistic children.The Centers for Medicare & Medicaid Services concluded that "Applied behavior analysis (ABA) is an exception, in that controlled trials have shown both the efficacy of programs based in the principles of ABA . . . . As of the date of this report's publication, the only established evidence-based practice available is ABA."The American Academy of Pediatrics and the National Research Council both emphatically recommend ABA-based interventions. 

  • Why is Minn coming up with untested, unproven and expensive coverage. Who exactly benefits from that, certainly not the children because research should drive what, who and for how long therapy is provided. HF181 is being driven by expensive, elite and racist lobbyist and their legislative puppets without any base for scientific based research and equal justice by choosing losers and winners. Shouldn't all children be winners?

FALSE. See above.

  • By taking comments and advice from overpaid and arrogant lobbyist makes Governor Wallace (DFL of AL) seem like an inclusive angel. Their goal is autism disparity today, Autism disparity tomorrow and Autism disparity forever. The sad thing is - this is 2013 and we have a Black President. This kind of exclusive arrogance is why disparity for Black and Latino autism kids is extremely high. The current language of this autism coverage legislation HF181 only promotes and enhances deliberate discrimination and more health inequity for the have nots.

FALSE. See above

  • It mentions Lovaas therapy as a method of autism therapy. Dr. Ivar Lovaas did a study on autism and ABA which has never been repeated whereby the same results were gotten. In addition, there are many kinds of ABA such as VB, etc and I don't see those folks names being called as the actual therapy.

FALSE. The language in the bill is as follows:

“Coverage requires:  intensive behavior therapy, such as applied behavior analysis, intensive early intervention behavior therapy, intensive behavior intervention, and Lovaas therapy; “

Lovaas therapy is just one of many autism therapies. It is not specifying a particular provider. Furthermore, the language in the bill is modeled after the general exclusion in BCBS of MN health insurance contracts, which reads:

“We do not pay for services for or related to  intensive behavioral therapy programs for the treatment of autism spectrum disorders including but not limited to: Intensive Early Intervention  Behavior Therapy Services (IEIBTS), Intensive Behavior Intervention (IBI), and Lovaas Therapy.

Please note the similarity between what is currently being excluded from coverage and what HF 181 is asking to be covered. The language is almost identical for a reason.

  • This is the provider who tried to tell Minn dept of Human services (DHS) it is medically necessary to bill for three different therapist at the same-time, for the same child and claim it is medically necessary whereby a judge in Ramsey district court for the unth time ruled wrong and not medically necessary, nor is it allowed by DHS, CMS or Congress. See below articles. For instance, who the heck gets 3 bills when you go to a clinic (from the receptionist, nurse and doctor) You get one bill - it is called cost of doing business. This provider is so greedy that AIG JP Morgan look like Mother Teresa angels.

It is a more straight forward way of billing. The fact is you are paying for the receptionist, nurse and doctor in the doctors’ fee - it is just not broken down as such. Additionally, the hallmark of the most effective ABA providers is exactly what is being described here; well trained and well supervised therapists to ensure best outcomes as recommended by the Behavior Analyst Certification Board.

  • It leaves out other equally helpful therapies that are based on developmental and play approaches such as EDSM, FloorTime, etc. Well - actually I heard because they too have lobbyist and the funding to fight, their language was just added yesterday.

Well, it was added so it does not exclude it. These therapies have very little evidence to support their effectiveness; why are these OK to cover? Lobbyists are a part of the system.

  • It leaves out people that are public employees and have children with autism.

FALSE. The State Employee Group Insurance Plan (SEGIP) covers autism treatments. The bill states that this plan must maintain current coverage. Additionally federal employee’s health plans cover autism therapy.

  • I will just lump these next few together……Those deciding and helping Rep. Norton are as white as Minnesota ice and lack diversity and inclusion from racial and socioeconomic lower families. This kind of tactic is why we have such high health disparity in Minnesota - one of the worst in the country. I am beginning to see this is not an accident, rather subtle policies that deliver disparity all while giving us a hug, smiling and saying we care. What a load of crap - if you don't mean your words then please don't patronize us. Rep. Norton wants to dictate, mandate and order private companies to pay for services it is not willing to cover for its own patients of Medicaid who are the most financially vulnerable and can not by any means afford autism therapy. That is like going to your neighbors house and demanding they feed their kids and clean their house, while your own children are starving and your own house is dirty. Isn't this the ultimate elite way to write any legislation? I would say it is DOUBLE STANDARD access to health care services at its best.Rep. Norton, why not have adult conversations with families from North Minneapolis, South Minneapolis, Mankato, St. Paul, Blacks,Whites, Hispanics, Health Plans (since you want to order them around) and Minnesota department of human services so that you get a consensus whereby the children win not some arrogant and ignorant lobbyist or their employer?I urge Committee Chairs in both the house and the senate and others to please ask Rep. Norton to go back and work on this legislation in a holistic and fair manner. Because right now it sounds disparity today, disparity tomorrow and disparity forever. And, that is wrong in 2013 and a Black President.

WOW, nuff said. I am a mom of three children on the Autism Spectrum. All three receive ABA therapy. One boy has already recovered and been discharged, my other boy is predicted to attain best outcomes as well, and my little girl has made significant gains. HF 181 is about ending the discrimination against those with autism by mandating coverage for insurers in Minnesota.  

You have no idea what you are talking about except one thing

You are right that some greedy provider like Loovas are ripping off families and government, and they will find way to continue to do so regardless whether the bill passes or not.

But there are other good provider with competitive rate, and services that I have seen works for my own kid. Currently I am paying from my pocket until our saving lasts, as insurance does not cover it and since I work and pay tax, I don't qualify for the government programs like Medicare or whatever the crap that is.

There should be insurance coverage for the therapies just like some of the other states have. Also, unless you have a kid that is in the spectrum, you would never understand how painful and difficult it is to go through the emotional and financial burden that drops on your head. Since more and more kids are getting diagnosed every day, you will find someone close to you tell you the story, if not yourself.