Florida’s “Window of Opportunity Act”
Up to 80 percent of autistic children could hold jobs and become independent, according to Sandra Hastings, a certified behavioral analyst, who has worked with autistic children since 1989 and is now working in the Santa Rosa County schools in Florida. Hastings is quoted in an article in the Northwest Florida Daily News about the costs of autism and specifically for intensive therapy using Applied Behavior Analysis. A new piece of legislation in Florida, “The Window of Opportunity Act,” would
require large group health insurance plans to provide diagnostic screening, intervention and treatment of autism. It would prohibit insurance companies from denying autistic children therapy.
Two separate bills, SB 2654 and HB 1291, are working their way through House and Senate committees. The Autism Society of America-Broward Chapter has more details about the act, which also calls for “public institutions of higher education to incorporate into educator certificate course curricula recommendations of Commissioner of Education relating to autism awareness & teaching students who have autism spectrum disorder.” (And here’s some recent discussions about legislation that passed in Arizona providing for insurance coverage for ABA; about a bill in Wisconsin that did not pass; and about a family in Colorado who successfully sued their insurance company to get coverage for ABA.)
David Triana of Navarre, who notes that he pays $13,000 per year for his 13-year-old son’s ABA, says “‘“Early identification, early intervention provide for you to take advantage of the window of opportunity to give children the intensive therapy to reach their maximum potential.’” The need to hurry hurry and do as much as early as possible is an argument frequently used to explain why intensive treatments are necessary for young autistic children. Early intervention was important to get my son’s learning started but—as he’s gotten older–I’ve learned that the windows don’t “shut,” but that they get bigger—-and they stay open.
Tags: arizona, asd, asperger, autism, government, Insurance, Legislation, Parenting, pdd-nos, wisconsinRelated Stories
POSTED IN: Insurance, Legislation, Treatment
31 opinions for Florida’s “Window of Opportunity Act”
jonathan
Mar 31, 2008 at 3:23 pm
Where does ms. hastings get her 80% number? Apparently it is something she just conjured out of thin air. Has she presented any empirical evidence of adult outcomes? Lovaas has received considerable NIMH funding to present adult outcomes of his 9 best outcome subjects in his 1987 study who are now like in their late 30’s and early 40’s, yet has still neglected to publish anything in the peer reviewed literature. As a person on the spectrum, who has lost multiple jobs and was forced to retire in early 50s I really resent these claims which have absolutely no factual basis.
David N. Andrews M. Ed. (Distinction)
Mar 31, 2008 at 5:47 pm
I’m with jonathan. Both as an autistic spectrumite AND as a psychologist.
The Lovaas study was flawed in many ways (most of which were elucidated very well by Michelle Dawson).
Lovaas’ laziness is a sign that it didn’t really work how he said it did.
This is not to say that ABA-based education doesn’t work, period: it can, provided that Skinner’s principles are adhered to (as opposed to, say, Lovaas’ or Israel’s).
KC'sMommy
Mar 31, 2008 at 6:48 pm
ABA has been a real god send for K.C. It has helped him in so many ways, ABA is worth every cent.
I realize ABA may not be for every child but in our case it has been a blessing.
Katherine
Mar 31, 2008 at 7:20 pm
I live in South Florida and these bills are about more than just ABA and its puported success rate.
I can’t comment on the article and the sources, but I have read the bills. IMHO, the importance of this legislation is more about getting BASIC coverage for things like speech and OT after the state-run early intervention runs out at age 3. ABA too, to be sure, but as for me, I’d take anything. It’s more than we get now.
We have had to pay several thousands a year just for basic ST and OT which are denied with an autism dx –or any dx in that general umbrella under our private insurance. We’ve tried every possible code. We have not even considered private ABA, which might have been helpful. We just could not afford it. And our son has come a long way without it, but we do not think he would have progressed, had we not managed somehow to pay for ST and OT out of pocket.
Unless you live in Florida, you may not understand how truly inadequate the social services and school systems are here compared to other states like NJ, which may be more progressive. I have known several people who have left Florida and moved to NJ for this reason. The schools here try very hard, and there are some very dedicated and wonderful teachers (my son has benefitted from them too), they do what they can, but the schools need more funding too. The services like ST or OT you can get through the schools here, if you qualify, are quite minimal, and you likely won’t even get those unless you have a good advocate or are willing to put up a legal battle, also expensive.
I realize the “Window of Opportunity” title seems to suggest one should “hurry” and I too know that windows are never really shut. They do stay open. However, for the sake of everyone who cannot afford to pay out of pocket for basic treatments like ST and OT, leaving ABA aside for the moment, these bills are very important. Not just in FL, but in other states trying to pass similar legislation.
It will also be a miracle if these bill pass. Similar ones have been introduced here before, only to die. I for one am making calls to my local politicians to try to show my support.
Katherine
Maureen
Mar 31, 2008 at 7:31 pm
Re: Katherine’s point on the need for insurance coverage for speech, PT and/or OT. This is an issue not only for children with Autism. I live in Arizona and my child has a physical disability, my private insurer and most private insurers in my state, exclude OT, PT, and Speech services for any child with a developmental disability or chronic condition. The private insurers erroneously believe that every child is receiving services through the school or DDD system. Yes there are services through the birth to three system, but the point of IDEA was not to let private insurers off the hook (whether for birth to three or preschool and school aged children.) We need to advocate en masse for these services for ALL children with disabilities. I for one was quite frustrated to hear folks advocating for the autism bill perpetuate the myth that children on the Autism Spectrum are the only children not receiving adequate therapeutic services through their insurance. What is accurate is to say that private insurers were NOT providing behavioral intervention services and were discriminating against ALL children with disabilities where OT, PT and speech are concerned. (btw children with Fragile X, Rett syndrome, and lots of other children with developmental disabilities need and can benefit from behavioral intervention whether ABA or some other form)
My child has greatly benefited from birth to three services, preschool special education and today is mainstreamed with minimal supports, but he will always have a disability.
PS–Kristina I really enjoy reading your blog, it is always thought provoking.
Regan
Mar 31, 2008 at 7:37 pm
These FL bills are on a very short timeline so they need to fast track. As Katherine says, it’s more than about ABA.
Just FYI, Pennsylvania’s HB1150 is in an important committee hearing tomorrow.
Similar or related bills in legislatures: CT, FL, HI (but downgraded to a task force), IL, MI, MO, NJ, OH, OK, PA, and possibly other states (since not all the bills get equal publicity on the wires).
Kristina Chew, PhD
Mar 31, 2008 at 8:43 pm
And would the bills be passed if they didn’t seem to contain the amount that might be spent?
Harold L Doherty
Mar 31, 2008 at 9:35 pm
My son was diagnosed at 2 years of age, early for 10 years ago in this area. But at the time there were few trained ABA therapists available. He did not get the 40 hours from ages 2-5 but he has benefited greatly from ABA including as he aged.
Having said that the professional literature reflects a consensus that early is a period of rapid development during which gains can be maximized. There is no benefit gained for newly diagnosed autistic children in obscuring that reality.
Mr Andrews is entitled to adopt Ms Dawson’s opinions about ABA but they do not reflect the mainstream consensus about ABA and autism as reflected in the AAP, the MADSEC, the US Surgeon General, the NY state and California reports and the dozens of autism experts who comprise the Association for Science in Autism Treatment.
Although my son, Conor, did not benefit from the maximum amount of early intensive intervention with ABA I would not wish to see other newly diagnosed autistic children denied that opportunity just because my son did not have it. And just because development can be maximized during that early period does not mean that it can not occur afterwards albeit to lesser extent. There is no need to create conflict over a non issue like this.
shawn3k
Mar 31, 2008 at 10:28 pm
I did live in Florida, Naples area - and I am so thankful that we decided to move. Our son was diagnosed shortly after we moved back to NYS. FL’s educational system, is simply not good enough…in so many ways. Not through fault of the educators - their system is overburdened on so many levels and underfunded on the same.
Regan
Mar 31, 2008 at 10:31 pm
Well, I’ve always thought that exclusion on the basis of “mental status” was discriminatory; the mental health parity movement seems to agree.
Just for an update on a few articles that might have relevance or be of interest (sorry, only the abstracts, but a few folks, I believe, have full institutional access).
Chasson, G.S., Harris, G.E., & Neely, W.J. (2007). Cost comparison of early intensive behavioral intervention and special education for children with autism. Journal of Child and Family Studies, 16, 401-413.
http://dx.doi.org/10.1007/s10826-006-9094-1
Matson, J.L. (2007). Determining treatment outcome in early intervention programs for autism spectrum disorders: A critical analysis of measurement issues in learning based interventions. Research in Developmental Disabilities, 28, 207-218.
http://dx.doi.org/10.1016/j.ridd.2005.07.006
Matson, J.L. and Smith, K.R.M. (2008). Current status of intensive behavioral interventions for young children with autism and PDD-NOS. Research in Autism Spectrum Disorders. 2, 60-74
http://dx.doi.org/10.1016/j.rasd.2007.03.003
The last is interesting as a summing up of experimental parameters of various outcome studies as examples of various research designs and suggestions for ways to tighten up the research to state more clearly what outcomes are. (Not that it necessarily matters in politics–the Arick study cited within had, according to Matson, no accepted experimental design nor any discernible information as results and yet is the purported basis for a statewide sponsored program based on “efficacy”).
Katherine
Apr 1, 2008 at 8:15 am
Kristina, that is a great question about the dollar amounts mentioned in the bills.
I don’t think the previous bills did have a dollar figure (I could be wrong) and maybe that was part of the problem. It was seen as a “bottomless pit” by the insurance companies. These bills contain a cap on the amount of coverage. It is one of the things I am sure will be a point of negotiation.
We’ll see how far this gets. I’ll keep you posted.
Katherine
Maureen
Apr 1, 2008 at 11:22 am
As far as these bills being about more than ABA:
Please note that the Arizona law is ONLY about behavioral intervention (ie ABA). The advocates and the insurers negotiated the OT, PT and Speech out of the bill and the dollar amounts are $50,000/year for under 9’s and $25,000/year for 9-18 year olds with an ASD.
Kristina Chew, PhD
Apr 1, 2008 at 11:36 am
@Maureen,
thanks for noting that—–was this done to get the bills through? one step at a time….. My son’s received extensive ABA since he was ust over 2 years old, through the public schools in NJ and privately.
Regan
Apr 1, 2008 at 3:07 pm
“The advocates and the insurers negotiated the OT, PT and Speech out of the bill”
——————
Interesting. In Oregon ABA was negotiated out of the bill, so OT, PT and speech was what was left.
The passage in AZ was notable for getting the measure passed with almost breathtaking speed as measured in politics.
Maureen, if you were involved in the campaign, do you know what helped to get the measure through the legislature so successfully?
Maureen
Apr 1, 2008 at 9:38 pm
As someone concerned with disabilities on a larger scale I was one advocating for a more inclusive bill–that would have ensured access to behavioral intervention, OT, PT, and speech for all kids with disabilities. I truly believe that we have got to work together across disabilities. (I think it is reprehensible that insurers specifically exclude these services for children with chronic conditions or developmental disabilities–whether they have autism, down syndrome, Prader-Willi, Williams…).
However, as for the light speed. There was both grassroots support and lobbyist support. It seems that they chose to get incremental passage, and behavioral intervention was kept in the bill, while the other therapies did not remain in the final bill (which was a compromise between two very different approaches to the issue). Also it does seem that the $ figure helped the measure along as well–probably as previously mentioned– because it means a limit on an annual and lifetime basis.
passionlessDrone
Apr 2, 2008 at 1:17 pm
Hello friends -
The crazy part is that the insurance bill will likely never even come up for a vote; the person chairing the committee in the Senate is against any mandate of any type of insurance. Unfortunately, all this does is mandate that the state pick up the tab; although with several thousand children on the waiting list, and a few hundred being picked up every year, most children will likely be teenagers by the time they are ‘accepted’.
As far as 80% goes, considering most ‘autism’ these days is ppd, that might not be too far off the mark. Messy system.
Sigh.
- pD
Kristina Chew, PhD
Apr 2, 2008 at 2:57 pm
Messy and forging on—
@Maureen, you wrote “I truly believe that we have got to work together across disabilities”—I just have to say, yes and yes. I’ve been thinking about how many fewer research funds are allotted to (for instance) Down syndrome than for autism, presently. Of course there are differences but we also overlap.
Dr. Sandra Hastings
Apr 8, 2008 at 11:59 pm
Jonathon,
Don’t believe everything you read. What I said was that “IN MY EXPERIENCE” as the former manager of a Supported Employment program “UP TO 80% of the people” I served with autism were able to maintain some level of employment….that part doesn’t always make it into print. I am sorry you have had such a difficult time with employment. I certainly understand how hard it is to find and keep jobs. For the record, I don’t “conjure” anything from thin air or elsewhere. My hope for you - and for everyone who walks in your shoes - is to find the peace you need, whether that is through employment, relationships, education, or solitude.
Sandy
Kristina Chew, PhD
Apr 9, 2008 at 12:09 am
@Dr. Hastings,
Thanks for noting the source of the “80%.” I’ve many hopes that my son can be in that percent.
Regan
Apr 9, 2008 at 12:49 am
Well, looks like both bills are still in play
S2654
04/08/08 SENATE Now in Health and Human Services Appropriations; On Committee
agenda– Health and Human Services Appropriations, 04/10/08,
2:30 pm, 110-S
H1291a
04/02/08 HOUSE Now in Healthcare Council -HJ 00404
Paying the Bills: Seeking Insurance Coverage in Missouri
Apr 15, 2008 at 1:50 pm
[…] Florida […]
Kristina Chew, PhD
Apr 23, 2008 at 5:02 pm
Florida’s bill passed:
Regan
Apr 23, 2008 at 5:40 pm
Excellent that it passed in the Senate. Hopefully it will go as smoothly in the House and the other bill will get out of committee.
From Florida.gov wesite
S2654 Steven Geller Autism Coverage Act”
passed Senate 4/23/08
yeas 30, Nays 0, Not voting 1
Now goes to FL House
HB1291 Still in Healthcare council committee
State Senate Bill 2654 — Autism Spectrum Disorder — has passed the appropriate committees and seems ready to be passed by the full Senate this year. The companion bill in the House, HB 1291, has 80 cosponsors. But because of Speaker Marco Rubio’s preference for the insurance industry, his biggest contributors, this bill has been waiting since April 2 to be scheduled before the Health Care Council.
Ana Herrera
May 3, 2008 at 6:39 pm
If would be fair for health insurances to cover behavioral and music therapies and the neurofeedback. I have seen proof that these medical interventions are much more helpful to children with severe autism than others currently covered by insurances in Florida.
Ana
May 3, 2008 at 7:55 pm
Our son, a severely autistic 8-year-old, has never received coverage for behavioral therapy. Like other kids living with this horrendous disability, he would have also greatly benefited from music therapy and the neurofeedback (which are not covered by health insurances). In addition, we were recently pressured by his public school to withdraw him; which we did concerned about his overall safety. We enrolled him in home schooling, which we were told could be funded by the McKay Scholarship. However, this is very false. Neither they want him in school nor can we afford the high costs of educating him at home or of the therapies that are medically neccessary for him. It is very agonizing. There is just no compassion or willingness to help children like our son overcome this tragic disability.
Kristina Chew, PhD
May 3, 2008 at 8:38 pm
@Ana,
We never received any coverage for behavioral therapy either. Music therapy—lessons—have really helped my son; definitely not covered by anyone. And, when our son was 7, we had to withdraw him from his public school classroom because things were not working out and we were concerned about his safety. Is he being homeschooled now—-and how is that working out? Very best—
Shawn Lupella, Esq.
May 22, 2008 at 12:05 am
Maureen, Kristina Chew PHD. Especially good points. The bill that passed is flawed and maybe unconstitutional. Autism should not have been the only group covered. Down Syndrome, Cerebral Palsy, Spina Bifida, etc. should have been part of this bill. I have already started working to try to figure out how to include these other groups. As an attorney and a father of a son with down syndrome, I feel called to the task. If anyone agrees-and wants to join in…let me know. If the legislature won’t take it up in the next session, I am prepared to litigate to make it happen.
Kristina Chew, PhD
May 22, 2008 at 1:42 am
@Shawn Lupella, Esq., Thank you—I’d like much to know what you find out and how your efforts proceed. Here in New Jersey there’s a bill before the assembly for insurance coverage of autism treatments and it helps a lot to know what other states have done. Very best—
Shawn Lupella
May 22, 2008 at 11:29 am
I’m very interested as well–to compare and contrast the bills from other states. What I really want to know…Are these other conditions like DS, SB, CP, etc. already covered for ABA therapy in places like NJ–and now they are just trying to add autism to the list of already pre-approved conditions that qualify for the insurance-covered treatment?
Maureen
May 22, 2008 at 1:13 pm
@Shawn
1. These insurance bills are the first time that ABA is being covered for any condition, therefore in answer to your question this is not to add autism but rather to cover ABA for autism.
2. It is also very important to note that most states do not mandate coverage of OT, PT, or SLP for any conditions–even physical conditions that necessitate these services to increase or maintain ROM (range of motion), further many plans specifically exclude OT, PT, SLP for just that kind of coverage, therefore they only cover a set number 10-25 units per year in response to an acute incident (an accident/injury). Some states had begun requiring that insurance companies cover a set dollar amount ($5-10,000) for therapy during the birth to three age range (NH, MA and I believe VA) regardless of diagnosis. But most only state that if the policy covers OT, PT, SLP that early intervention could bill for reimbursement, but since most policies are written to address adults who have had an insult or injury the bills for early intervention services are routinely denied.
What we need is for all children with chronic health conditions and/or disabilities to have a portion of their therapy services covered by insurance–thus we have a three-legged chair: Family (premiums, co-pays, deductibles and additional), Government (early intervention, school-based, Medicaid, DDD…) and insurance. Unfortunately, children with autism are not the only children with disabilities who are not receiving assistance from the third leg.
Shawn Lupella
May 22, 2008 at 5:21 pm
@ Maureen
If that is true–that the legislation passed in other states for autism basically “stands alone” thereby creating a distinct class or group (autistics), apart from the other classes or groups with similarly situated developmental conditions (like DS), then there lies the problem with the bill. We cannot differentiate based on a classification or specific diagnosis when the “degree of need” for treatment is the basically the same for both groups.
-tslupelli77@yahoo.com
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