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Feds Clarify Obligations To Kids With Autism

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Melanie Feazell works with Declan Byrne during an ABA session. Federal officials say states must provide treatment services like ABA for kids with autism on Medicaid. (Francine Orr/Los Angeles Times/MCT)

Melanie Feazell works with Declan Byrne during an ABA session. Federal officials say states must provide treatment services like ABA for kids with autism on Medicaid. (Francine Orr/Los Angeles Times/MCT)

In what advocates are calling a major win, federal officials are for the first time telling states that Medicaid coverage must include treatments like applied behavior analysis for children with autism.

Medicaid programs nationwide must offer “medically necessary diagnostic and treatment services” to kids with autism, the Centers for Medicare and Medicaid Services told states in a bulletin this month. That includes everything from speech and occupational therapy to personal care services and medical equipment, the agency said.

The services must be included in what’s known as the Early and Periodic Screening, Diagnosis and Treatment program, or EPSDT, a package of offerings that every state is required to provide children under age 21 who qualify for Medicaid.

The move comes in response to an increasing number of inquiries in recent years from states facing legal action for denying services to Medicaid beneficiaries with autism, Melissa Harris, director of the Division of Benefits and Coverage at CMS, told members of the Interagency Autism Coordinating Committee recently.

Many of the court cases focused on coverage of ABA therapy, though Harris said that CMS was careful not to single out ABA or any other specific treatment in its directive to states.

“The expectation is children with autism are a population that need to have their service needs met under the state EPSDT obligation. ABA is one way to do it,” Harris said.

Medicaid coverage for kids with autism has traditionally varied from state to state. Establishing national requirements will have a huge impact, advocates said.

“This should be of enormous significance to beneficiaries across the country,” said Dan Unumb, executive director of Autism Speaks’ Autism Legal Resource Center. “It will dramatically increase access to critical, medically necessary care.”

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Comments (46 Responses)

  1. Tiffany says:

    To “clarify”…does this mean that ABA therapy will be covered by Medicaid for children with autism EVEN in states (like Texas, which is our state) that DID NOT expand the Medicaid program?

  2. Tiffany says:

    Also…when will this take effect?

  3. Lori says:

    When will medicaid begin to pay for ABA… Is this immediate? I have a 20 year old.

  4. VMGillen says:

    @Lori- heads up to be VERY assertive when applying for ABA coverage for an (almost) adult. Classic denial: there’s a narrow window of opportunity – before age 3, 5, 6, 9, whatever, for ABA to be effective. That is BS – check Princeton’s Eden program, for example, which has been working with geriatric people to good effect.

  5. Autism mom says:

    ….and what about the “working poor” who don’t qualify for Medicaid?! We can’t afford ABA because our policy will not cover it (gee, thanks Obama administration, for promising this in the ACA legislation [written in as such] then taking it out one month after the inauguration!). The state mandates mean SQUAT!!!! We live in a so-called mandated state for ABA coverage and we can’t get it. So many loopholes on fully- funded and self-funded plans. If you are a federal employee and have federal insurance? Forget about it all together. ABA is NOT cover in federal policies…regardless of what state you live in. We make 6 figures and going broke trying to provide therapies to our two children because our policies won’t cover. Because we have good jobs, we don’t qualify for Medicaid. Wake up DC!!!!!! This is a major crisis and these kids will soon be adults. Who is going to take care of them?!!!

  6. Robyn Schelp says:

    This is great for families who have children with autism, but what about the rest of children who have genetic disorders or unknown diagnoses who desperately need speech, PT, OT, and maybe even ABA therapies? In Missouri, insurance companies have to cover all necessary therapies for children with autism. My son has a genetic disorder. Because he does not have a rehabilitative condition (meaning that his delays were caused by an accident or health condition that occurred after birth) or autism, our insurance does not cover any of his therapies. I get very frustrated by the preference that I feel children with autism get compared to those with other disorders.

  7. Danni says:

    So one more time our government is picking and choosing who should get coverage and who should not. This is about politics!

  8. Carol says:

    This is huge because Medicaid sets the minimum standards. If Medicaid covers something then the insurance companies will start to have to cover it too because it is medically necessary. This gives those of us making too much money for Medicaid the grounds to appeal denial of claims. Real pain in terms of generating paperwork but I can see the light at the end of the tunnel

  9. Marilyn says:

    Will we have choices or will their only be one provider giving the ABA service?

  10. zdarc says:

    What about forcing private insurances to cover these services, and covering them for any child that needs them, not just kids with autism diagnosis. Our son has Asperger’s but it took us 8 years and 3 separate full evaluations to get that diagnosis, which our insurance refused to pay for (thanks BCBS). Meanwhile he never qualified for EI, or ABA, or services through school, and his OT and CBT we paid for out of pocket because his insurance refused to cover it because he didn’t have an autism diagnosis yet. Everyone working with from teachers to school psychologist to his OT agreed that he was on spectrum since he was about 4. We knew from the time he was 1, but getting a “team of experts” who see him once for several hours to agree with us seemed impossible. Diagnosing and treating our son’s autism has cost us well over $250,000 and he only just turned 11. To top it off he has only received a fraction of the services I’ve seen other kids get. I hope it has been enough.

  11. ASD support says:

    It’s a shame in this so call great country we live in …….paying taxes for illegal immigrants crossing the border freely daily with their kids. Here we are extremely excited that the federal government just put their stamp of approval for Medicaid to cover ABA! meanwhile, illegal immigrants line up to come over the border…..so much for putting my tax money to work for the citizens who are in need with Autism.

  12. HennyK.com says:

    Excellent advocacy work. Now, if we can only offer research on efficacy for services in adults, then the rest of us will not be abandoned after 21.

  13. Barb says:

    Too late for my son’s ages 22 &24. Don’t hold your breath on getting services at any age, especially for adults.

  14. Amy says:

    What about kids with other neurological disorders. My insurance like others have mentioned covers none of this because my child does not have autism. He has ADHD and learning disabilities. OT, PT, speech, and all types of therapy should be covered and should not be restricted to only children with autism. I think it is great to expand the requirements, but stop picking and choosing who and what diagnosis should receive help.

  15. Stephanie says:

    Does this include California? We have MediCal not MediCare.

  16. Veronica says:

    I e-mailed my questions to which they replied were out of their scope and directed me to contact our state.

    One of my questions is if ABA therapy can be billed directly to the Medicaid card like speech and occupational therapy or if it can only be billed under the CLS (Community Living Supports) aspect of the Kentucky Michelle P. Medicaid Waiver for individuals with developmental or intellectual disabilities.

    The federal clarification does not shed light on that or my other questions.

  17. Rita Dunham says:

    This is awesome!!!!!

  18. Veronica says:

    Will ABA therapy be made available in public schools like speech and occupational therapy?

  19. Jennifer says:

    As a doctorate level BCBA another issue of concern is the very low rate of pay for the behavior analysts in comparison to other mental health professionals. The pool of highly qualified therapists under this coverage will be extremely limited.

  20. D says:

    For those of you that don’t have Medicaid because of higher income than Medicaid allows, your child with Autism is still entitled to Medicaid via Medicaid Waiver. They “waive” the income guidelines so it doesn’t matter if you make too much.

  21. Angela says:

    I am a behavior analyst. Like some of the parents and other posters here I too believe this news is a mixed bag. It is amazing news for families with kids with autism-I am really happy that they will have more options for accessing treatments they need. However I am also saddened that this mandate, like the private insurance mandates, ONLY covers kids, and only kids with autism. Again, as a practitioner (and one that works primarily with adults and with individuals with many diagnoses) I am saddened that I do not have a viable way to provide services to ALL those who would benefit (and the ABA research overwhelmingly says many more people would benefit). I hope eventually these laws pave the way for all to get coverage, and I encourage parents and professionals to do what they can to get involved in the politics that will bring wider coverage.

  22. Elena Lyons says:

    We’re on a waitlist for a DD Waiver, and Medicaid’s covered for my son’s ABA, OT, Speech, Personal and Respite Care, Medical and Dental, AT Device (he’s nonverbal). So far all that we’ve applied for! It took a year though for all these services to be available to him and you have to keep calling to follow up. Plus a lot of paper work, e-mails, phone calls, assessments/screenings and most importantly a lot of patience and prayers. Keep on going and doing til you get it! Once the door’s been opened, the windows will too! Goodluck. (We still keep him in our family insurance as well, with Medicaid as secondary insurance.)

  23. Dan Michaels says:

    This is great, this has been a long time coming. Thank God!

  24. Sarah says:

    EPSDT requires Medicaid to pay for services that are deemed medically necessary to ameliorate or improve a children’s condition. So really it does provide for other conditions. See “EPSDT and the Catalyst’s Centers’ policy brief for more information.

  25. Dwayne Marlborough says:

    Many states require this coverage in all group health plans, and all should. Providing coverage for autism-related services has been shown to be cost-effective, but moreover, it is essential to the quality of life for entire families.
    One glaring omission, however, is that in NO state are self- insured plans, such as are provided by dinner of the larger corporations in the country, required to provide such coverage, since they are regulated through ERISA and exempt from state laws in this regard. This omission is a grave injustice and MUST be rectified. Congress must act.

    And I agree, these services should be provided for ALL conditions where they are known to be effective. We allow medications (pharmaceutical therapy) to be prescribed based on their safety and efficacy, not by specific diseases. Why should effective therapies be any different?

  26. Marlene says:

    I am an experience ABA provider currently working with agencies as an independent contractor with autistic students of all ages.
    How do I get myself out there to assist these families with services through Medicaid?
    I want to help in anyway I can!

  27. Whitney says:

    Amy, most services are done because the government is forced to do so. Many states and insurances will find their way around the requirements for autism and it is no different any other cognitive disability. Many here are disappointed with this it is a peace meal approach because it does patch work but does not address the underlying problems. There is not services provided for all groups. When child with autism reaches majority these services are dropped. It hurts the person with autism more with lost of service. It will be the same for with ADHD and PT, OT. In your son’s case I suspect ADHD is not enough to warrant to be considered to disabled by professionals and that is what insurance is going by.

  28. LUIS says:

    What impact will this have on the educational program for Children with Special Needs? Will they delegate this responsibility to Medicaid. ?

  29. Lisa Kuchik says:

    I will believe ABA getting paid for by insurance when it actually happens. I live in Missouri and despite state mandates that says they have to pay, I haven’t gotten insurance to pay for anything. Now my kids are supposed to qualify for medicaid but the state has screwed our paperwork up 3 time. I gave up on them. I will take the fine this year for not having insurance.

  30. Carlee says:

    ABA therapy is Skinnerian conditioning that borders on torture!

    My kindergartner’s best friend is B, a little boy with ASD, and they attend a Montessori school together. If my kid wants to spend all day in the play kitchen and declines afternoon snack, it’s regarded as a personal preference. If B tries to spend all day in the play kitchen and declines afternoon snack, he’s regarded as non-compliant.

    B also gets several hours of ABA at school and it KILLS me — the poor kid sits in a chair, being offered gummy bears to touch his nose (or some other pointless task) 20 times. If he refuses to touch his nose because he’s sick of gummy bears, hates red gummy bears, is bored or just plain tired of the stupid exercise, he is forced to complete the 20 repetitions, he CANNOT leave until he does. He’s frustrated and angry a lot of the time and I don’t blame him one bit!

    If somebody tried to make my girl sit in a chair and touch her nose in exchange for gummy bears, she’d probably do it a few times and then try to wander off — because she’s bored, doesn’t like yellow gummy bears or because she’s FIVE and, um, 5 yos have short attention spans. If a therapist physically stopped her from wandering off without having 20x done? Epic tantrum, she’d maybe even try to push the therapist out of the way.

    The kids on the spectrum with a reputation for being aggressive? My guess is they HATE ABA, have been subjected to it for years and are JUSTIFIABLY uncooperative.

    Covering ABA therapy via Medicaid will result in nothing but more tortured, unhappy autistic kids.

  31. Eric says:

    Now get on the 2 year therapy wait list.

  32. Michelle says:

    Yes once again our government picks who gets help – we should all have access to these treatments. All of us – not necessarily but access without denial even for a fee

  33. Sandra Mallo says:

    This is ridiculous. Obama care skipped this requirement. Left it up to the states. Why should taxpayers be made to pay for services that private insurance doesn’t. Essential Medicaid recipients are getting better coverage than every day taxpayers can get. Why should they get vetter?

  34. Laurie F says:

    Carlee, please know that most ABA services are nothing like what your friend’s son is receiving. I’m a BCBA that has worked with children on the spectrum in school for many years and we design teaching programs to be functional, avoid using food as reinforcers, do preference assessments to determine what children are motivated by and would never force a child to do something as a consequence for non-responding. If a program isn’t working, we look to what we need to change to in our instruction, not force consequences on a child. Your friend should speak up and get a different ABA provider.

  35. Christina S. says:

    Yes, we also live in Texas and I’d like to know if Medicaid covers it here?

  36. BS says:

    Ya. What about kids with other diagnoses (I.e., MMR, TBI, down, etc.) who have been denied ABA and other services because they aren’t autistic? This is BS. stop providing services for one disability- provide it for ALL who need it! In AZ unless you have autism, you’re at the bottom of the list. This diagnosis isn’t that unique. Kids with TBIs have issues very similar to ASD

  37. Bessy says:

    Yes. Getting medicaid to pay for ABA therapy is a mission. There are requirements for providers that cannot be met. Many providers give up after they realize that they are not making progress. So many children are waiting for services.
    Yes. I agree that many children can benefit from ABA not just children with autism. In addition, many of the children with disabilities also fit the diagnostic criteria for autism. Having DS, ADHD, or Fragile X does not exempt one from having ASD. Your child can have both. If you believe that your child has the same issues as a child with autism then you should try to get a second opinion and possibly a diagnosis.
    Carlee, you have made some strong remarks about Skinnerian conditioning. ABA is not about Skinner, it is not about personal philosophies, it is about effective treatment. Children without disabilities also have to follow adult directions and comply. On the other hand, if you see a child being tortured by anyone, behavior analyst, Mental health counselor, parents, teachers, thief, or even a policeman, you should report it to the authorities. It is time for us to move forward and try to help these children. If you know of a better way to help children then direct us to the research. We all need to work together.

  38. Joanna says:

    In Arizona, we have ALTC (Arizona Long Term Care). We had to fight for it and we were denied several times, even though my son is a former micro preemie and is on a feeding tube. It will pay for many services until the child turns 6 and then they try to take it away. We got dropped from 30 hours of ABA to 8. My son is homeschooled because of bullying and behavioral regression and they refuse to bump up the services because a public school should be providing them. However, public schools mainstream and my child is overwhelmed and has a hard time functioning.

    BTW, ABA is supposed to be fun. My son loves it and did well with it.

  39. Chris says:

    My son was adopted from foster care, is 5, and has been diagnosed with Autism. He receives Medicaid until he is 18 as part of the adoption incintive. Because of the diagnosis of autism he qualifies for Children’s Medical Services (CMS). And he did not have to go to an HMO. We live in florida. He has been receiving OT, Speech, ABA, and consultations with a developmental ped. Hei is on the wait list for PT. And he receives OT in school. The HMOs would have limited how many visits for therapy he could have. With CMS it is not limited.

  40. Rebecca says:

    As the mother of a autistic child I want to speak out to all those parents that have posted here explaining that their non-ASD children too need special care. The fact is that ALL children and ALL those in need of medical care deserve the highest of quality medical treatment. Autism rights groups have fought hard to win this small battle, but if your child has a rare disease or one that hasn’t been propagandized like ASD, what are you to do? What we need are organizations that demand that access to medical care be made a constitutional right to all people. No one should have to lose everything they have just to attempt to receive medical care for a severely ill family member, and no one should fail to receive care because they are low income–especially not in the USA.

  41. mighty says:

    Glad to hear something is being done. This doesn’t benefit my son (he’s over 20), but will help many more. We waited for over 5 years for services in Kansas, now the wait is 8 years long. I’d like to see more done for those who’ve aged out of the school system (at age 21) and graduated to the couch. There’s a tidal wave of kids coming after us, what will they have to help them?

  42. Mary Peraza says:

    This is wonderful! As a grandmother of a almost 5 year old, I’ve personally seen the tremendous growth of my grandson from the early time (thank God) that he was diagnosed at about 2 years old to his current and still growing in great milestones! His therapist have been awsome, always patient, strong, persistant even when it hurt us to see their application of whatever program they applied in such a determined but loving way. It amazed me to see so many possitive behaviour changes for his betterment. Also amazing has been his enjoyment of his personal growth. His God given intelligence has not been wasted due to his early detection and application of all his therapy for autism. He is a joy! Only thing that deeply saddens me is knowing that there are so many undetected children (for so many reasons) out there. With this new act, God willing all children can be reached and when so, parents very aggresively do all they can to make sure their child gets what he deserves, all the love patience and loving support from all!

  43. ivanova smith says:

    I don’t think aba is the all solution for autism treatment I heard that it a treatment that goal is to make the autistic child act more typical and that seems aggressive because I think autistics can live productive happy lives being themselves. I understanding try to teach autistic children to be nice to others and not hurt themselves or others but I don’t support the stuff that tries to make them not stem and force them to experience unpleasant sensory issues that can be painful for an autistic individual. I heard that aba does this kind of stuff and I thing that they should allow autistics expression themselves the way they are. I also don’t like the idea of forcing autistic people to give eye contact that just not how autistic communicate and interact with others. I say this as a person on the autistic spectrum and I am glad I did not go to aba because it would not be fun. I don’t think you need to act neurotypical to be independent and live a happy fulfilling life. I have friends and family I am married and I am not typical. I rock and don’t give eye contact and i just be my self and I love it and I love happy life and I think if autistics and communicate the way they naturally understand then socialization. now i don’t know all the details of aba or if it changed over the years so i could be wrong but i just don’t like the aspect of trying to make the person more, “normal” we should learn to accept difference and embrace not try to change it or make them fit in box that they can’t fit into.

  44. Mary says:

    When I call medicaid they have no clue what Im talking about. Nobody does. This is the only place Ive even heard of this. How can I get meficaid to agree to cover this? Someone please help!!!!

  45. Bessie says:

    ABA has been great for many families. The skills that children learn are important for them to be happy and independent. I don’t understand why insurance and medicaid tries to avoid paying. What would they suggest families with autism do in order to help their child.

    I also tried to find out what is going on with Medicaid. I was told that claims are not handled through CMS but local medicaid offices. This process may be a way for medicaid not to pay for ABA therapy once again. Does anyone know what is going on with Florida medicaid. Are children getting the services?

  46. acab1024 says:

    It is my understanding that as long as your child has a diagnosis from a qualified specialist or physician, all children with autism qualify for Medicaid. My husband makes over 6 figures and my son receives Medicaid.

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