Hope for Ava’s Law

Today is Autism Day at the Capitol and dozens of families are there to raise awareness of Autism Spectrum Disorders (ASD) and persuade their lawmakers to support SB1, Ava’s Law. Sine Die 2014 was devastating to supporters of both the autism and the medical cannabis measures, but the situation this year is – so far – looking up.

Many of the kids at the Capitol today will undoubtedly be wearing shirts that bring attention to ASD and the thousands of Georgia families who live daily with autism’s impact. It’s unlikely that any of the children today are wearing a shirt with the slogan, “I’m a Lil’ Job Killer!” – but that message was implicit when groups like Americans for Prosperity and the Tea Party Patriots recently fought against insurance coverage for ASD in Virginia. Those groups, along with the Chamber and the NFIB, have opposed measures like SB1 in nearly all of the thirty-eight states that have passed such legislation.

Despite the political clout of these groups, GOP support for SB1 appears unified, and advocates for Ava’s Law have every reason to believe that 2015 is their year. SB1 will provide coverage for ASD through age six, critical years for the intensive early intervention that can be life-changing for autistic children.

The majority of children with ASD, however, require treatment beyond age six, which is when they usually enter the public school system. On top of existing per-student annual costs, educating a child with ASD will add around $8,600 to that amount. For this reason, Senator Josh McKoon was right to assert last year that taxpayers would come out on top if SB1 passes.

Moving beyond the current session, Georgians will continue to benefit if the age cap in SB1 is ultimately eliminated. What other conditions exist that, like autism, are diagnosed by a physician and are treated by medical, psychological, and behavioral specialists, but are denied coverage once a patient turns a certain age? TriCare, the insurance for military families, has no age – or dollar limits – for their autism coverage, and in 2013, Governor Rick Perry signed legislation eliminating age caps for autism coverage in Texas (there’s a not-unreasonable $36,000 annual coverage limit). Many self-insured companies and governments, including the City of Atlanta, the City of Smyrna, Home Depot, and IBM already offer autism coverage to their employees, and providing that coverage hasn’t squelched their growth. The economic benefits to families living with autism, and to all Georgians, are ample reason to support SB1 and the families who have fought for this coverage.

21 comments

  1. Lorie says:

    This would really be a big shame on GA if this passes. There is currently already an Autism coverage bill on the GA books. This is plain and simple a “let’s get ABA paid”. SB1 would take away existing autism coverage for thousands. Basically taking away benefits for all ages to benefit a few who would benefit.

    Shame on you Teri for spreading this propaganda and not disclosing that the mother supporting this bill works for an ABA company and this is a financial benefit for them.

    • Allan W says:

      Lorie,
      The only coverage our insurance provided was for the initial evaluation at the Marcus Center to diagnose Autism. One, one-time payment for a single doctor appointment. That’s it. Every recommended treatment — speech therapy, occupational therapy, sensory therapy — had to be paid entirely out of pocket. Depending on the specialist, these run $50 – $150 per hour.

      Care to cite any law on the books that says otherwise? And since you are so eager to question motives, who do you work for and what is your motivation for spreading such deliberate misinformation?

      • Lorie says:

        Allan,

        I’ve used GA code 33-24-59.10 to get my son’s OT/ST, etc covered until our policy became self funded. Rather than taking away existing services from others, why aren’t they building from that? What right does Ava’s Law to take this away to guarantee payment of ABA?

        I don’t work for anyone. I just hate that this SB1 is taking away existing services from thousands. Read 33-24-59.10 and SB1. You can clearly see what is stricken from the original code and how that is going to impact many children. There has been no deliberate misinformation. Rather clarifying the misinformation being spread. http://www.socratek.com/StateLaws.aspx?id=1457327&title=Coverage%20For%20Autism

  2. didyouknow says:

    I think this is a fabulous article.

    For the person that is against SB1 above, Autism is not an industry or job that people go in to to make money or financial benefit.

      • didyouknow says:

        As somebody that works in the field, I do not do so for the money. I do not do it for the 12-14 hour work days I work most days of the week. I do not do it for the scars I have all over my body from the aggressive behaviors . I do not do it to put 30k+ miles on my car per year. I do it because I believe in the kids, their potential, and the power of early intervention.

        If I had any interest in a career with financial benefits, I would have been a lawyer or gone to work for an insurance company.

        • LorieW says:

          So you advocate to take away existing coverage for other children so you can get paid? How is that not making money or supporting a niche industry?

          • John Konop says:

            In all due respect, my wife was a behavior adjustment special education teacher in Texas …Back than the class was filled with students with numerous issues, including autism….From my experience my wife and her friends were very dedicated, it was never about money in this very difficult job. The burn out rate for people doing this type of work is very high….I use to joke with my wife and her friends, about all the things they bought for the kids out of thier own pocket….it would be cheaper to stay home….

            I have no idea about the details in this bill…..you may be right….you have not broken down the issue well enough for me to understand the difference….I will say insulting dedicated people doing a tough job for peanuts is not helping you at all.

            • Lorie says:

              John/didyouknow,
              The questions were not intended to be an insult but an honest question. To me, if you are advocating a bill, you should be familiar with different facets of how the bill can impact people. We’ve had the pleasure of working with some great therapists and had the displeasure of interacting with other therapists/clinics who are committing blatant fraud.

              I will now breakdown Ga Code 33-24-59.10 and SB1 so it is better understood to see how this is going to impact many children. 33-24-59.10 has been around since 2001. It defined Autism as a neuro condition and mandated coverage if the policy had neuro coverage at the same limits. There was no age cap. SB1 redefines Autism under the DSM which takes it out of medical and puts it under mental health which shuts out more children under the GA benchmark since it excludes autism unless it is defined as neuro. (line 24 https://www.cms.gov/CCIIO/Resources/Data-Resources/Downloads/georgia-ehb-benchmark-plan.pdf)

              SB1 also strikes out existing coverage and caps it to age 6. (lines 53-55 of the bill) Children previously covered now lose benefits.

              SB1 allows for non-license persons to be “supervised” by licensed personnel. (line 38-40) ST/OT/PT and all other providers must be licensed to bill for services. So should ABA providers. Non-licensed personnel is a big window for fraud at a compliance level and a big risk to children. I’ve seen schools do “ABA” training and after two days, qualify the teachers as ready for students. I’m a big supporter of teachers but I do draw the line at some of the situations they are put into because of their lack of qualifications.

              In short, SB1 is gutting an existing bill that provided some coverage.

              • Teri says:

                By “some coverage” do you mean the 20 ST/OT sessions per year that insurance will generally cover? 20 sessions each year is a drop in the bucket and will not nearly be enough therapy to give any substantial support and treatment for children who need intensive ST/OT and, yes, ABA in order to have a chance at success in a typical environment.

                Is your core issue that you are anti-ABA? ABA is certainly not all things for all kids – but it has helped many thousands of children make tremendous progress, and I am intimately aware of how mandated coverage has been life-changing for families living with autism.

                • Lorie says:

                  “Some coverage” is not cutting off coverage at age 6. According to the CDC, the average age for diagnosing ASD is over the age of 4. The best action would have been to take the existing code and build on it. This would have provided existing coverage for older children and allowed ABA for younger children. Less than two years of ABA is not sufficient for the children who could have benefited from it.

                  I actually supported the original form of the bill years ago that included RDI, Floortime, ABA, etc. It was a joint effort that used different forms of effective therapy to treat autism. I do not support the current version because it causes more harm than good as a whole. If SB1 did not gut existing services and coverage, I would support it.

                  Years ago when we applied for the KB waiver, we were denied on Ga’s version of the Fed Regs. At the same time frame, thousands of children were kicked off due to those same guidelines. I spent lots of time and effort and got my son on KB and also made GA comply with the Fed Regs. I did it for my son but not at the expense of others.

                  Please explain to me how you are good with taking away coverage from others to get ABA paid. That’s a question I keep asking but no one seems to want to answer. Most of the supporters quote the same words but neglect to mention what is being taken away. There are more children in GA aged 7-18 who need coverage than the 0-6 who maybe could benefit from ABA.

                  • didyouknow says:

                    Where does SB1 gut existing services? The bill says ‘ habilitative or rehabilitative services, including applied behavior analysis or other
                    professional or counseling services necessary to develop, maintain, and restore the functioning of an individual to the extent possible.’ When I read the bill that amends 33-24-59, it only adds in ABA and makes the age cap.

                    I do not want any child to be without services. However, the proposed age cap is only meant to be a test/starting point to see if this is even doable. Once lawmakers see the business world will not crumble, an amendment to increase the age cap will be more likely to pass next year.

                    I think the reason why it cuts off at 6 is to hit the children that are not in the school system yet. The early intervention is aimed to be a catalyst for the children prior to entering school to get them as ready to learn as possible. Then, once in school, learning and school-provided services will make more of an impact…and teachers and professionals will not have to spend a year teaching a child how to sit in a chair or how to point to an object.

                    How do you know that there are more children aged 7-18 that need help than 0-6 that need help in the state of Georgia? Do you have data to support that claim?

                    I am not trying to be nasty. I don’t want your son to be without coverage if he is over the age of 6. If he is under the age of 6, though, I hope he will be able to use the help with whichever therapy you choose.

                    • Lorie says:

                      If you look at lines 53-55 of the bill, it clearly states the age cap is for all services. This was brought up last year also and was claimed by the supporters of Ava’s Law that this was going to be fixed. It hasn’t and is being pushed again.

                      Taking a look at the graduation rates of students with disabilities, you can clearly see that students with disabilities are NOT getting what they need in the public school setting in Ga. http://www.edweek.org/media/2014/01/27/19grad-c1.jpg

                      Outside therapy that a school determines is not educationally related should be covered by health insurance but if SB1 passes, it will no longer be covered under 33-24-59.10 or the GA benchmark plans. The public school system is ill equipped to handle the currently enrolled children and it is quite naive to think that they can. That is why parents should have the option of using their private health insurance for additional coverage. As a licensed ABA provider, you should get paid but not at the expense of any child’s existing insurance coverage. If you want ABA paid for, then add it on to the current code and don’t mess with existing services.

          • Atticus25 says:

            They didn’t say that they advocate taking away existing coverage so that they can get paid.

            Making assumptions about peoples motives that fits a narrative you want to be true so you can criticize them isn’t a good look, at least not if you want to be taken seriously.

  3. didyouknow says:

    The school systems are not equipped to handle the need, I agree. However, if kids were helped earlier, maybe the problem would not be AS big when they get older.

    Lines 53-54 are crossed out in the bill, it is 54-56 to which you are referring. Parents should be able to use their private insurance, but what does it currently cover? Some speech and some OT? Is that enough? Most of these kids need more help than that and it is costing them 1,000s of dollars per year.

    Instead of bashing people for trying to help others or report on the topics, I think your efforts would be better spent working with them to meet on common grounds.

    • Lorie says:

      Exactly what are you pushing? Autistics are not what is being portrayed by Autism Speaks. Half of the children diagnosed with ASD are either average intelligence or higher. It is quite insulting to imply that without early ABA intervention they are a problem as they age. The problem is cutting off services at 6. ABA is not the end-all, be-all cure. Therapy (all forms) should be available for all ages. Like I stated before, SOME therapy is a whole lot better than NO therapy which you are supporting. Sorry but your financial gains do not outweigh the needs of other children who are older and do not choose to do therapy with you.

      I’ve done my advocating for autism changes. First rule: Do no harm to others. Second rule: Is it good for the population as a whole or a small percentage? You need to think about those rules. If I choose to educate the unaware of changes to existing codes, I will do so. This is not something that Ava’s Law supporters and AS were not aware of last year when this same issue came up. Their response was “oops, we’ll fix it next year.”. This is not a priority to them to get it right.

      I agree that this should end. You ask for specifics and I provide them to you. You offer no counter defense that is supported by documentation.

  4. didyouknow says:

    Lorie, we have different ethical standpoints and this conversation could go on forever. However, I do not believe we will ever see eye-to-eye. Best wishes to you and your family.

  5. didyouknow says:

    Let me clarify. I did not mean that children with autism are a problem at all. I meant the problem that the schools aren’t always equipped to teach them to the fullest capacity.

    I am pushing that you shouldn’t be so negative and assume that everybody in the field is our for financial benefit.

    • Lorie says:

      Easy solution: Don’t gut the bill and build on it instead. Don’t take away benefits and services because the present system cannot support all of the children in GA. If you can’t do that now, then wait until you can.

  6. LorieW says:

    Their refusal to admit services are going to be cut for children and for them to continue to push for reimbursement for their services speaks volumes. Parents are catching on and questioning the bill. Advocates refuse to answer the question head on and continue to deflect. This was a well known point last year. Ava’s law core group knew about the issue and promised to get it fixed. Still hasn’t. Once is an oversight. Twice is deliberate.

Comments are closed.