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Feds Omit ABA Therapy From New Insurance Requirements

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Despite a heavy lobbying effort, the Obama administration declined to include autism therapy in final rules this week defining what must be covered by insurers under health care reform.

Many states have established mandates in recent years requiring at least some health insurance plans to include coverage of behavior therapy to treat autism. But with the passage of the 2010 health care reform law, advocates were hopeful that a nationwide standard would be established.

Under the federal law, most health insurance plans will be required to cover 10 so-called “essential health benefits” starting next year, one of which is “mental health and substance use disorder services, including behavioral health treatment.”

Autism advocates urged regulators to include a requirement that applied behavioral analysis, or ABA therapy, be covered in rules governing what exactly qualified as a “behavioral health treatment,” but a final rule issued this week makes no mention of the treatment.

The result, advocates say, is that coverage for ABA and other autism behavior therapy will likely remain defined by the state a family lives in.

“Behavioral health treatment, including ABA, was specifically written into the law by Congress as an essential health benefit, yet that requirement seems to have disappeared from the new HHS regulations,” said Peter Bell, executive vice president for programs and services at Autism Speaks, which has lobbied for ABA coverage mandates.

“Geography shouldn’t dictate whether a person with autism gets needed care,” said Bell who called the new regulations “disappointing.”

The criticism comes as Obama administration officials hailed the regulations for providing expanded coverage of mental health benefits, which have been excluded from nearly 20 percent of individuals’ insurance plans in the past. What’s more, Kathleen Sebelius, secretary of health and human services, said that the new rules would make it simpler for consumers to shop for and compare health insurance plans.

In addition to mental health, the new regulations will mandate coverage of maternity, habilitative services and preventive care, among a handful of other broad categories, beginning in 2014. The Obama administration largely left it to the states, however, to determine specific requirements within each category.

In an analysis of plans submitted so far, Autism Speaks estimates that as many as 24 states may leave out autism coverage, including some which had previously passed laws to require it.

Officials from the U.S. Department of Health and Human Services did not initially respond to requests for comment regarding the decision not to include ABA therapy within the federal regulations. But in an email to Disability Scoop on Friday, agency spokesman Fabien Levy wrote, “states were given the option to define habilitative services and many states took the opportunity to do so on their own.”

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Comments (45 Responses)

  1. Crimson Wife says:

    So treatment for substance abuse (a chosen behavior) is mandated but treatment for a legitimate neurological condition isn’t? Addicts chose to start drinking or using drugs but nobody chooses to get autism. Who is more deserving of health coverage?

  2. Noni-Ayanna Roach says:

    I am appalled and shocked at this decision. As a mother of a 9 year old son whom I had to pull out of school and homeschool so that his needs could be appropriately met, I feel this administration is failing our son and our family as a whole. I can’t believe that I am being told the middle class is cared for and I am now being expected to somehow come up with nearly 60k for ABA treatment for my son. Yes, that is how high it can run/year without insurance for a middle class family. Are they going to make katie beckett gov’t insurance for children with disabilities available to all with simple yearly renewal applications that are not the size of a Brown University application and including novel pages of “a day in the life” of your child then? Unbelievable. just so disappointed. Its a shame how this decision just hurt to so many on the spectrum. Just so sad. It’ll come back though in the end when these “children” become adults and behaviors have never been addressed. lol

  3. Noni-Ayanna Roach says:

    sorry for the spelling errors…just angry. I was on a Blue Cross wait list for services and not knowing what my state will decide to do next in regards to treatments is upsetting. I think that decision should be a federal one not a state one.

  4. Katie Wright says:

    Shame on the Obama administration. They know better. There are a number of high ranking Obama officials with children on the spectrum who know how critical this treatment is. What is the point of health care reform if it acts to strip vulnerable voiceless children of their best hope for an independent productive life?

    I wish the Obama administration remembered 1 in 54 American boys have autism. I wish that the President and Mrs. Obama could show 1/100th of their commitment to childhood weight problems to autism- and let’s no forget that we already know the cause and the cure for obesity.

  5. Amanda says:

    right- if only our kids were alcoholics! Their treatment would be paid for by the Affordable Care Act!

  6. Arshiya says:

    It’s really upsetting that in a country that actually has these services available, we are making no moves to provide greater access to it. ABA is the ONLY evidence-based treatment currently available for autism spectrum disorders and the U.S. has an advantage in having certified ABA therapists all around the country. But what’s the use when those who need it most may not be able to gain access because of high costs? It’ll lead to more reliance on unproven methods that may cause more harm and misunderstanding. We (The Global Autism Project) aim to provide ABA training and services to under-resourced communities around the world that have no idea what ABA is or that it exists. It’s so important to make sure we’re using the best methodology available, especially since so little is known overall regarding ASD. Clearly, here in the U.S. we still have a ways to go before we recognize the necessity of ABA.

  7. kmichaud says:

    Yet is was ESSENTIAL to mandate contraception and abortion, but not cover ABA or screenings for prostrate cancer. I think their priorities are coming to light.

  8. Heather says:

    this is so sad.. i bet if obma had a child wih a from of austim he would have pushed for something….. very sad…

  9. Heather says:

    i just wanna cry as it is we do NOT have health ins for our son since he has a form of autsim NO ONE will cover him under $600.00 a month and we make a little too much money for get help from the state of OHIO.. i think the rules for health care from the sate for kids like my 4 year old son sould be changed.. income should not matter un less you are making over a hundred grand a year ( we don’t even come close to make even half of that)

  10. Marée says:

    I too am upset with the Obama Administration. They keep talking about all the wonderful things they are going to do for this country and they are the ones that deny it. It was all to get re-elected. They keep blaming the Senate and Congress and the Republicans for holding everything back. Our children and their futures should not be subject to politics. There is no ‘Affordable’ in the Affordable Care Act. Have you seen what the premiums are? Some of my family members would pay $150 more a month then they are now on private insurance.
    My son is now 14 and heading for high school where it is even harder to get support services. He is high functioning but some of the kids and moms I know have an extremely difficult time with the demands that are placed on their families to pay for all the therapy that their kids need. My heart goes out to all of them.
    And Crimson Wife’s comment is right; alcoholics and druggies get help, but our kids are neglected in national coverage. The state agencies are all cutting back and can’t afford it either.
    To Noni Roach and other parents: I’m so mad too, I think the local and national news media needs to hear about this. We are all connected to Disability Scoop, Autism Speaks and our other local organizations that will talk about this new ruling, but I guarantee you unless we all speak up about this new ruling, the national and local media will never hear about it. Since Behavioral health treatment, including ABA, was specifically written into the law by Congress as an essential health benefit, yet that requirement seems to have disappeared from the new HHS regulations, I think we can all start a ruckus about it. I’m going to forward this email and this article to every local media outlet I can. I know our local FOX media and maybe ABC media will jump on this story. We have to try to do something, anything to help our kids. There futures are written into this ruling!

  11. Chancellor says:

    Flashward 30 years from now…..News headlines will be filled with less boomers on disability, but an ever increased amount of non contributing, nonworking disabled autistic’s, who would have benefited from early intervention and treatment.

    I too took my son out of public school due to poor educational services. The good news is he thrived in a home school environment and has exceeded his peers. He’s currently in honors college classes and was highly sought after by several private and public colleges, hungry for well educated students that the public schools fail to produce. By simply following the Home school schedule you too can achieve the same quality. After he finished the SAT’s he was still ranked higher than our local school standards.

    I’m disappointed the Obama administrations has let disabled families down. I expected better.

  12. Chancellor says:

    oops I meant Less boomers on Social Security, not disability

  13. Tim says:

    So once again we have been lied to by these folks! This is just shameful.

  14. Bobbie Jane says:

    There are other, equally effective treatments for Autism. Parents should not be locked in to one type. Rather, states should allow families to use their own therapists/clinicians to help the direct the care that is best for their particular chile. I don’t read this as “no treamtment being provided.” Just not ABA in particular.

  15. CJB says:

    Another provision of the Affordable Health Care Act is that doctors and hospitals will receive bonuses for providing less care for its seniors. You haven’t begun to see the damage Obamacare is going to cause.

  16. Lori says:

    What does this mean for speech and OT? I am not that concerned about ABA for my own children (although I do think it should be an option), but what about speech and OT? My self-funded plan (governed by ERISA and not subject to state mandates) has been denying us based on the fact that he is receiving habilitative therapy and not re-habilitative.

  17. Sir FreeBird says:

    Dear Mr. President Obama:

    We who serve disadvantage people with behavioral issue need to enlighten you and the U.S. Department of Health and Human Services there are extreme advantages to Applied Behavior Analysis for long term setbacks for these people; as well as other misfortunate individuals. If no one steps to the bases of ones behavioral issues, in the beginning of treatment, then who can realistically treat them for the long haul in life? If you dramatically need brain surgery for a blood clot issue, do you want them to just remove the blood clot or would you and the country prefer these specialists analyse what caused this emergency in order to prevent similar complications future down the road in your life?

    Sincerely,

    Sir FreeBird Edwards

  18. Melissa H says:

    I want to vomit. What else can we expect from this administration? Parents were completely misled! Katie Wright: you said it perfectly. Where are the priorities in this administration? Childhood obesity trumps children with autism? Are you kidding me? But wait! With the new DSM changes, many will no longer qualify and most importantly to the insurance industry and medical community, no autism epidemic exists!! Well, look at that! So, if the numbers will suddenly decline, as they will when the new DSM V comes out, well, there is no reason to provide ABA to children! Why there is no longer an epidemic! Funny how that works. Greed. Our children are getting the shaft due to greed
    Nothing more. And now pharma will jump for joy because without ABA interventions for thee children, even more will be prescribed! $$$$.

    I AM SO DISAPPOINTED IN MY COUNTRY. IF WE CANNOT HELP THE MOST VULNERABLE AND PROVIDE THEM WITH A FIGHTING CHANCE, WHAT DOES THAT SAY ABOUT US ( read THEM).

    I am tying from a phone and likely making no sense but I am so infuriated, I had to make a comment. Sad day.

  19. carly says:

    Obamacare was passed so that is all the president cares about, not the details about what is included.
    This is his legacy.

    But isn’t this discrimination against kids and adults with autism not to provide them with appropriate medical treatment? ABA is not “experimental treatment”.

    If chemotherapy was eliminated from cancer treatment wouldn’t we all be in an uproar? As you know, it once was considered experimental.

    So how do we succeed with making ABA therapy standard treatment just like chemotherapy is now standard treatment?

    It is clear that the autism groups are not approaching this the right way. They should look at medical history and follow the path that was already pioneered.

  20. PBMom says:

    And families with children with autism LOSE AGAIN. Despite the heavy lobbying effort? So what bargains did the administration have to make to whom to get this through? If children with autism received ABA treatment early on (and my son in his teens has benefited), they can 1) be mainstreamed in schools where it is less costly to them (or they choose to not educate them which then makes them dependent as they are adults, which will cost the government billions). We’re going bankrupt out here people! It does not cost that much more in terms of a premium to cover this. Tired of this being under mental health. It is a proven neurological disorder with organic dysfunction that originates in the brain. You all don’t understand that if our children cannot get the help they need, whether through ABA therapy and/or the school system (who routinely fail to educate our kids), they will be DEPENDENT on disability payments and Medicaid and other “government handouts” because they will not be able to work. My husband and I tried to figure how much we would need in insurance to try to cover private pay of assistance from the time he is 21 until the time he is 65 and not calculating the rate of inflation, we would need over $5 million in insurance coverage minimum to meet basic care needs for him. How incredibly SHORT-SIGHTED this decision is. We as a community will pay for this. Now gives them a good shot at a productive life. If you are worried about baby boomers crashing Social Security, you haven’t seen anything until the 1 in 88 children by 2008 calculations (and I’m sure that is getting worse) grows up and can’t work. Truly cannot work.

  21. Carmen Allen says:

    Thank you for saving so many on the spectrum from harmful dehumanizing practices

  22. Tacitus says:

    ABA may be the only evidence-based treatment, but what is its true object? Though it achieves the aim of reducing autistic behaviors, the evidence that this in itself is sufficient for a fulfilling life is sorely lacking. There is far more to life than merely failing to rock back and forth flapping one’s hands.

  23. Lynn Pedotto says:

    There are many effective therapies which are used to remediate autism . RDI, Floortime, Sonrise, Denver Model, DIR etc. ABA is not the only way, nor is it scientifically proven to be the most effective. Subsequent attempts to replicate the original study have failed. As the mother of two children with autism, I have seen the best growth and development by blending several therapies and modalities. I also can say, based on my experience, that my younger son regressed under ABA. He became very prompt dependent and his speech declined. ABA is NOT for everyone so thank you Obama administration for acting sensibly in this matter.

  24. Cathy says:

    Welcome to the world of all the other disabilities who don’t receive services because other children’s disabilities aren’t the disability of the moment. Other disabilities that can benefit from therapies do not receive the Cadillac care that families with autism push and gobble up since it is not law!

  25. mainer says:

    I know this will likely be an unpopular position but I personally feel that ABA (at least if it is 40 hours a week as it usually is) is a bit abusive, especially if the aim is to extinguish harmless autistic behaviors or force the person with autism to be social when he/she does not feel comfortable with it. The main issue is getting people to accept the autism and help them perform to their full potential, not try to change them into someone who they are not (which is often the goal of ABA).

  26. Kelley Morris says:

    I am so sad about this! Does anyone have any suggestions on how to go about helping to change it?

  27. annie says:

    wow, how short sighted of our government and insurance industry. Sure ABA is expensive… but not as expensive as lifelong round the clock care…. I’m sure lobbyists fought hard behind the scenes to make this happen. But still I agree that there were a lot of “conditions” placed ahead of this that are completely self created and could use a dose of personal responsibility rather than priority over a developmental disability…. sigh.

  28. stephanie sokolosky says:

    I live in a state with some provision for insurance reimbursement for services for children with autism, however, to actually find a way for reimbursement of those services is very difficult. My opinion is that the insurance companies intend to make it difficult.
    The sad news is that with early appropriate intervention (play-based, social/language based, which is also consistent with structured behavioral interventions where reinforcement is essential), the children often make wonderful improvements. The unfortunate is that often these early interventions do not occur, because there is no “visible” means of reimbursement. Sad that many states do not do the right thing.

  29. Mary says:

    This is just the beginning. My son has Down syndrome – wait until he needs a procedure or (gasp) an organ transplant – do you think this horrific piece of legislation will ensure that he is allowed to get the procedure? I sincerely doubt it. This has been my fear all along – that folks with disabilities will be totally left out of the equation because they don’t fit into the bell curve of productive life years. This is the bell curve that will be denying life-extending procedures to seniors via the IPAB (yes – “death panels” as recently admitted to by that famous Keynesian nut job Paul Krugman). Now we are just waking up to the real agenda put forth by this administration – thanks to the low information voter we have four more years of this insanity. This may be a surprise to those who:”expected more” from this administration; but to those of us who are well aware of their true agenda are not surprised at all. There will be plenty of money for contraceptives, abortions, drug and alcohol treatment – but children, and adults, with disabilities will be left out – it has already started.
    The healthcare of our children should not hinge on the agenda of those in power – we need to do what is right by our kids. We are subjected to the daily lies of this administration and the compliant media just laps it up and spews it at us daily. Time to call a lie for what it is – a lie and stand up for our kids before it is too late.

  30. Beth T. says:

    Noni: I am in the same situation as you. I pulled my nine year old out of school for the same reason. I receive many newsletters from autism groups and now I am reading many articles about how play-based therapy is best for children with autism. They are saying this because they will eventually find a reason to eliminate ABA because it is too costly. I mean, how much can playing with a child cost, right? May I suggest to you what I did with my child. I have been attending the Autism Treatment Center of America to learn the Son-Rise Program. It works!!!!!! I was sceptical at first, but once I started the program at home, it really works! My daughter is really responding. Please check out this program!!!

  31. PBMom says:

    @mainer You do not understand ABA therapy. It sounds like you are thinking of how Lovaas therapy was. The ABA my son receives is sort of a combination of principles of Son-Rise and applied behavior analysis. It helped my child from licking walls and giving us no eye contact to me taking him to a ROCK CONCERT, for him to ride a horse, for him to give me a hug, go to a baseball game, for him to now be learning job skills that might lead to a job stocking shelves. Even though he is still nonverbal, he has a great sense of humor and now can answer yes/no questions. He took to an IPad communication program, but something happened with that and he chose not to want to do that, so we have backed off a bit on that, following his lead. If you are objecting to that kind of change, I really don’t know what to say. Accepting your child is fine. Using ABA therapy as a means of treatment does not “change them” in the way you are thinking. And I agree with the other statements that a mixture of a lot of things works well for kiddos. ANY child with a disability can learn using the principles of applied behavior analysis. I do have some great video of “before ABA” and “after ABA” therapy that might convince you. Our local news station did a story on us.

  32. PBMom says:

    @Beth We were there back in Jan of 1999 (Option Institute) for our intensive. Patrick did great there, but he did need something more. Three individuals who were with them realized this and went to Florida to start Growing Minds, blending the principles of Son-Rise with a variety of other things, customizing a program for each child. One of the people who directly worked with Patrick at his intensive was among the 3 who left. We used them for our home program for a very long time. We fundraised to get the amount to go. Had lunch with Raun. We got to visit him when he came to lecture down here in Houston, too. They are amazing people and we were blessed for the help we received.

  33. Beth T. says:

    PBMom: I here you! I wish that more people would understand that there are other things out there besides ABA. I am heading back this April to finish Max Impant! THen I will have all three classes under my belt. This has totally transformed our lives and our family.

  34. Grace says:

    I’m sorry – but it is time to face the face that the responsibility for raising your child is up to you – including costs. Having three children with disabilities, I saw the “writing on the wall” years ago and worked hard to provide support/services outside and state or federal funded agency

  35. julia says:

    I don’t see it that way. It’s a medical necessity. Not educational. I pay a big premium for a reason. This is no different than a diabetic requiring insulin, IMO. Behavior therapy such as ABA is an essential treatment.

    Additionally-many of you are confusing the Discrete Trial with ABA. Very different things. If your had a talented BCBA working with you, then you would know. My children were never harmed and it’s rather insulting that some refer to it that way (dog training) By far, they made the biggest improvement with ABA. hands down. Yes, other avenues are good too such as Sonrise or RDI or Floortime. Each child is different. So each approach is different. However what all of these treatments have in common is that they are intensive. Even if you don’t support ABA or understand ABA, you should still be upset by this outcome!! Its a slap in the face to autism families. At the very least, support those who will be negatively impacted by this. I hate that the community is constantly polarized. Can’t we collectively unite and agree on something?

  36. julia says:

    As far as paying on our own; we spent over $25,000 on ABA ALONE. 100% out of pocket. No insurance coverage(even though we live in a mandated state-another joke. So many loopholes). It was worth every penny but I don’t know about you, but I don’t come from an upper/class family. $25K is a lot. We shouldn’t have to go bankrupt trying to help our children. Period. This isn’t asking for a government handout; it’s asking our insurance companies-which we pay into-cover this treatment. Big difference. My family doesn’t take handouts. We weren’t brought up that way.

  37. F Dang says:

    ABA is not a specific form of therapy. The Journal of ABA was started in 1969. They took the finding of the psychologist who did Experimental Analysis of Behavior. All this research was done in Labs at the various universities. The psychologists who started the JABA wanted to take all this research information and Apply it to clinical situations, such as working with individuals, etc. So there are many forms of behavioral therapy that falls under ABA or from the research of the experimentalist.

    When choosing a therapy, what every the therapy may be, choose the therapy that fits the child. For some children Floor Time may not work, mainly because they haven’t developed speech or they don’t interact with others. RDI, although there isn’t any research done on that approach, Clinically it works, although it is very intense for the parents. Certain therapies such as discrete trial and pivitol response may be a better approach for younger children. discrete trial works better for non verbal children who do not make contact with others.Pivitol response can be use for children with Autism as well as typical children.

    Parent need to get together and start working with your legislators.

  38. RS says:

    So much “For the People.”

    We are dumb enough to keep re-electing these fools who only look out for themselves, then get angry when they do not look out for us.

    WAKE UP AMERICA!!!!

  39. Nathan says:

    That was a stupid move on their part because autism is becoming more common each year. I remember it being 1 in 110 children with autism,then it became 1 in 88 children,and now 1 in 50 children are diagnosed with it. It’s THERAPY for crying out loud not surgery. Autistic children also tend to be big targets for bullying trust me I know from experience and knowing others who are autistic. I personally think that people should protest to it because I personally think it’s ignorant that there’s a way to help them and we’re denying it.

  40. Joyce says:

    Our family has insurance coverage through my husband’s employer, Koolsmiles. We just found out today that ABA services will no longer be covered under the insurance plan. What can I do to stop this from happening, who can I contact to voice my concern, and since they just changed the plan and increased the amount of money my husband now has to pay for insurance, who can we contact to get the insurance canceled so we can get other insurance that will offere ABA coverage.

  41. JR says:

    Thank god they will not cover this torturous practice for children! It’s funny, you know – insurance companies frequently refuse to cover expensive quack medicine that doesn’t actually cure any disease. I love how they only quote an Autism Speaks person in this article and no actual autistic people.
    My son and I are both autistic. I never had therapy, I never allowed the school to put my child through therapy. We’re weird, but fine. I actually let my child have a child hood instead of a ten year long therapy session! I let him be his own weird self! What a concept!

  42. Ann says:

    I feel that there is a need to understand the medical neurocognitive
    Affects on children and if you have someone that
    has limited scope of knowledge in this area they could do a lot of harm
    as was done with my son. We have no way of knowing
    what their supervision is once they practice and even
    before they become certified. I think ABA has a place but to practice
    the requirement should be a Phd with psychology. Too many with a bachelors or MA
    not in psychology but just certified by a test and than schools are
    using them as behaviorist. If I could just practice nursing after college
    and just because I passed my boards God help my patients. It takes
    a higher level degree with a well managed mentorship which is
    not the norm and they could really hurt a lot of our kids and families
    especially our most vulnerable kids–special needs. I have been
    through it and have been heart broken for my son because
    our school does not care they will take anyone cheap not caring
    if they are appropriately educated and credentialed. We need to WAKE UP
    and take a look at how this is being done because it is
    not well monitored and there are a lot of universities offering this
    degree again needs to be high level degree or we are
    doing alot of harm to our children. I would love to speak on
    this very topic and our experience.

  43. Ricky says:

    It is not just state to state variance that people should be looking at. I just moved to a huge employer that offers BC&BS coverage out of NJ who is a is ‘self funded’ insurer. Being self funded they only have to cover what is FEDERALLY mandated even though I live in the state of Massachusetss where we have progressive state level laws requiring coverage for ABA. I don’t have the coverage anymore. It is a shame. My last employer also offered BC&BS out of Virginia, they covered ABA, I thought I was set sticking with Blue Cross but I am learning the hard way. Getting ready to take a loan on my house to continue coverage. It is really just sad there is not federal backing for this. Our son has been so well served by his therapy. People like him that don’t get this service are just going to need more help later…

  44. Shanaynay says:

    Sadly, I’m not surprised at all. Obamacare is socialist medicine. We will now have to wait weeks before we can see a doctor; weeks, if not months, before we can see a specialist; and if you’re over a certain age, you will not be treated because the govt will decide that you’ve live long enough and you’ll probably die anyway. They’d rather rehab an alcoholic because its cheaper and faster than pay for those with lifetime conditions, such as autism. It’s sad, very sad.

  45. shannon says:

    This allows the federal government to continue to OPT OUT for it’s own employees. Regardless of the state mandates, a federal employee cannot get ABA services for their child because the federal insurance will not cover it.

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