Sec. of Human Services Doug Racine. VTD/Josh Larkin
Sometimes laws passed with the best of intentions become political footballs in debates that have nothing to do with the problems lawmakers have set out to solve.
A case in point in the 2010 legislative session was Act 127, the so-called “autism mandate,” which was used in arguments by politicians and lobbyists who opposed the single-payer health care legislation as an example of how the state has failed to contain medical costs.
Trouble with these arguments is that the numbers cited are projections — not actual costs. The Legislature delayed implementation of the legislation so that it could hear a report on the financial impact of the mandate that insurers and the state cover specialized autism services.
Act 127 was designed to ensure that children under the age of 6 diagnosed with autism receive the therapies they need to improve their physical skills and their ability to interact in social groups.
As of July 1, 2011, private insurance companies and state Medicaid programs were supposed to begin picking up the tab for these therapies.
During this legislative session, however, the new Secretary of the Agency of Human Services Doug Racine testified to lawmakers about how much it would cost the state to implement the law: $10 million for children who range in age from birth to first grade. In addition, advocates had pressed for coverage of children between the ages of 7 and 17, and that would add another $9 million in costs to the Medicaid program, which already spends $64 million a year to support children with autism with personal care attendants and special education programs.
Read the Act 127 FINAL Report 2-10-11
The long-term projected savings for early intervention services (for ages 0-6) is about $20 million.
Susan Besio, commissioner of the Department of Vermont Health Access, said: “The thing that’s gotten lost in all of this is we pay $64 million in autism services, unlike the commercial carriers.”
Private insurance companies cover about 24 percent of children with autism, according to Suzanne Santarcangelo, a special projects manager for the Agency of Human Services. Often, however, services for children with autism are denied coverage, she said. Parents then turn to Medicaid reimbursements. “We’re picking up where private carriers don’t pay,” Santarcangelo said.
There are 1,100 children with an autism diagnosis in the Medicaid program – a higher proportion than any of the other New England states, Santarcangelo said. Of that total, more than 800 are between the ages of 7 and 17.
The state and the federal government, through the Medicaid matching program, pay for 97 percent of autism treatment costs, according to a report to the Legislature. Private insurance companies, meanwhile, pay for only 3 percent of the cost of autism-related medical services.
In testimony, Racine urged legislators to repeal the law because he said the state couldn’t afford the increased costs for new autism services. He later asked lawmakers to move the effective date for insurance and Medicaid coverage, which they agreed to do.
“The governor set a budget and revenue target,” Racine said in an interview. “People can agree or disagree, but those were the numbers.”
Racine said he worries that increases in spending on autism will come at the expense of other needs his agency is trying to address, including staffing gaps at the state hospital, adequate investigations of reports of child abuse and neglect, and efforts keeping older Vermonters out of nursing homes through the choices for care program.
He is also concerned about next year’s budget, in light of federal cuts that appear imminent. “We have to wait and see what they’re doing,” Racine said. “If they cut the Low Income Heating Assistance Program and childcare subsidies, this one problem that might pale in comparison with other problems in the state.”
Private insurers won’t be required to pay for autism-related therapies until Oct. 1, and Medicaid programs are off the hook until July 1, 2012.
In the meantime, young children in Vermont with autism who have behavioral problems related to an inherent difficulty with communication through speech and facial expressions will go without the intensive speech and behavior therapy that could help them develop communication skills.
Politicians and lobbyists seized on Act 127 as one of three examples of state initiatives that had failed to control costs (the other two were Catamount Health and the state Medicaid program), though Act 127 hasn’t yet been implemented.
Jeanne Keller of Business Resource Specialists, an insurance brokerage firm, called out the Shumlin administration for advancing H.202, the health care reform bill, when it couldn’t find a way to pay for costs associated with Act 127. (The autism law required that the state conduct a study to determine what the costs might be.)
Sen. Vince Illuzzi, R/D-Essex-Orleans, used the same information on the floor of the Senate in an attempt to prove that the state hasn’t successfully contained health care expenditures.
The Legislature and Shumlin administration, however, didn’t implement the “autism mandate” right away for the reasons Keller and Illuzzi cited – lawmakers and state officials are worried about the costs of providing intensive services. That’s why last year the Legislature asked for the study Keller and Illuzzi used in their arguments against health care reform.
Suzanne Santarcangelo, a special projects manager for the Agency of Human Services, said the research shows that applied behavior analysis, one of the key tools used to assess and help change the behavior of children with autism is proven to be effective, but it is very expensive. The cost per child can run as high as $200,000 per year. That’s because children from babyhood to age 6 would need intensive services, 20 to 40 hours a week of therapies, plus attendant care and “wraparound” services.
It would cost a total of $10.7 million to provide those services to 183 children in Vermont in fiscal year 2013 when the law goes into effect on July 1, 2012.
State officials couldn’t say what the mandate will cost private insurance companies.
Racine said the bill wasn’t a high priority for the big three insurers – Blue Cross Blue Shield, Cigna and MVP.
“When I arrived in this job, the mandate was there,” Racine said. “I didn’t hear from an insurance company until very near the end of the process. I reached out to them, but they didn’t see it as a big deal. Why not, I don’t know. The mandate was there; if we had not proposed extending the mandate, it would have stayed in place.”
A legislative report that is examines the feasibility of expanding services to include specialized supports for children with autism shows that if private insurers are required to provide coverage for children with autism, the state could save $5 million.
Editor’s note: This story was updated with additional information at 8:25 a.m. May 11, 2011.
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Failure to deal with the issues related to autism early in a child’s life simple means that the cost of trying to alleviate them later will be more costly. Unfortuantely, it sounds like the state is again being “penny wise and pound foolish.” Setting budget targets that ignore serious community issues is not what I voted for in the last election. The disappointments continue.
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Thank you for the article Anne. As Co-Chair of the Vermont Coalition for Autism Insurance Reform on behalf of all the members and advocates, we express our gratitude for the Act 127. The law will have a meaningful impact on the children diagnosed with autism, who will now start to receive the medically necessary ,evidence based treatments that will help ameliorate the debilitating symptoms of this diagnosis.
Our group remains committed to expanding coverage beyond age 6. There are already significant inequities in the availability of services in the state currently, e.g. children with cancer can receive treatment through insurance, but children with ASD cannot.Even in different parts of VT,some children can access needed services paid for by Medicaid, while others cannot.Passage of Act 127 could help address these types of inequities. Our medical community and society does not stop treating children with diabetes, cancer etc when a child turns 7 or receives a diagnosis at age 13. In regards to the projected vs.actual cost impact – 2 states with actual claims data impact are South Carolina and Minnesota(passed reform in 2001). After 10 years the actual impact on the premiums was .83 cents per month! And that was the Blue Cross Blue Shield plan. Perhaps that was why they were so quiet. They are doing it already in 25 other states and for older children too.
Vermont should continue to evaluate current spending and try to expand coverage for services under private insurance thus saving money to the state budget, property taxes and with long term societal benefit.
Ron Marcellus
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While the football is being tossed back and forth, my 11 year old daughter is still without the necessary treatments that she needs. My daughter, Katarina, is a 5th grade student in Union Elementary in Montpelier and has moderate autism. She is in need of speech therapy and behavior therapy. We would like for our premium-paid private insurer to cover these treatments so that she can receive these treatments at home. Unfortunately, our insurer will not do this without a mandate.
The current mandate under Act 127 only reaches children to age 6 or start of first grade, whichever occurs first. This leaves out many, many other children, teens and young adults with autism who can also benefit from therapy. Through no fault of their own, these older children will continue to go without getting necessary treatment, even though their working parents pay insurance premiums.
What if we had oncologists advocating for treatment of children who are in stage 1 cancer, but not for kids with more advanced stages of cancer?
What about the cost of Medicaid? 25 other states have stood up to insurance companies and now require them to stop denying or severely limiting necessary treatments for children with autism. Of all the states, Vermont is the only state that has also passed the mandate onto themselves through Medicaid, despite the fact that the state is already paying for more than 97% of costs while private insurance companies only pay 3%. In Vermont, the advocacy focus on getting medically necessary treatment for children with autism has always focused on private insurance and not Medicaid. One can only wonder if, had it not been for Medicaid, perhaps the mandate could have expanded to serve more children who now continue to go without.
Still, I am happy for the families whose children will now get treatment. My daughter and I will stand at the dock and wave at the families who are fortunate to be able to set sail with their children: children who now have brighter futures in front of them thanks to the mandate. Perhaps with the next lottery our number will come up and we can set sail, too.
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Concealing the remarkable potential of antidepressants in autistic disorders, is to corrupt the human and ethical rights of these childen and their parents. Autism and depression share the same chemistry. Parents may access Pubmed, and enter “antidepressants” and “autism” for more references.
A placebo controlled crossover trial of liquid fluoxetine on repetitive behaviors in childhood and adolescent autism.
Hollander E, Phillips A, Chaplin W, Zagursky K, Novotny S, Wasserman S, Iyengar R. Neuropsychopharmacology. 2005 Mar;30(3):582-9.
PMID:15602505[PubMed - indexed for MEDLINE]
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My son Joey is nearly 9. I support Act 127, and I am hoping that it expands to include people with Autism OVER age 6. After all, Autism doesn’t magically disappear when kids turn 6.
When my son was diagnosed with Autism at age 2 ½, he was subsequently eligible for and accepted onto Medicaid through the Katie Beckett waiver. I also chose to keep paying the premiums on our private insurance. I did this to ensure that he was protected, and that his needs would be met.
However, my private insurer routinely denies coverage for my sons needs. For instance, Joey is functionally non-verbal. He needed a reliable form of communication, and a Voice Output device was prescribed. The device was expensive-well over $8,000. Cigna denied the claim. You and I-and the rest of the Vermont taxpayers- paid for it through Medicaid.
Cigna is now denying coverage for my son’s occupational therapy-which is something that has been covered for 5 years. They are stating that Autism is not a covered condition! I am strongly considering dropping our private insurance and letting Medicaid cover these treatments since Medicaid does cover this treatment. At this point, having private insurance is actually getting in the way of having my child’s needs met. As a working parent trying to do the right thing, it’s a frustrating situation!
The fact is this; my son has complex medical needs. Cigna has been covering his medical appointments, his medical procedures, his consultations with out-of-state specialists-they just aren’t covering the medically necessary, research-based treatments.
If our family drops private insurance due to the ongoing lack of coverage for autism specific treatments, Vermont taxpayers will be funding all of my sons medical appointments, all of his medical procedures, all of his consultations, all of his treatments……..I don’t believe that we, as a State, should be letting insurance companies off the hook and forcing the taxpayers to pick up their slack.
I need to point out that the cost of my son not getting appropriate treatment is, of course, significantly higher. He is a child who, without proper interventions and a strong family unit, could easily end up in an extremely costly out-of-state placement. Vermont taxpayers would, of course, have to foot the bill.
I’m really not asking for much. I’m not asking you to make Vermonters pay more. I’m just asking that you make the insurance companies pay their fair share.
Thanks for reading.
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You said it Anne! It appears that there was a lot of misinformation about this bill. It was intended originally to end autism insurance discrimination by private insurance for ALL ages. Please go to the excellent statehouse testimony from the http://www.vtcair.org/ site. Right now we do not have adequate number of providers with expertise in autism to manage therapies that are medically necessary. Providers for therapies will fill our state when there is a way for them to be paid. It will bring competition to the state in a way that will be very useful and helpful to families. It will bring revenue..
I requested interviews to our Governor and Doug Racine during the gubernatorial campaigns. I am hopeful we can sit down and determine how it is that families/adults are not able to get coverage that is evidence based through private insurance.
A lot of hard work to get the word out on what this bill means. Medicaid compliance is very important for the treatment and services for autism. However it is a separate entity from the private insurance mandate to end discrimination based on “condition not covered.” What’s funny is that we hear many private insurance companies are trying to figure out how to fulfill this need. Perhaps by looking at our neighboring New England state, Massachusetts, we can work alittle more quickly to help the 2007 VT Autism Plan Report which was to “make a plan.” Lets do it! Thank you to all who are trying to help this cause! ~ Anne Barbano
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Autism is a disorder of the brain and the digestive system, and in the same way insurance companies cover depression, by-polar, and other medical issues of the mind and the gut they should cover Autism treatments for the entire life of a human being with autism. My grandson has autism and the services he has received since he was two years old have made a tremendous difference for him and his family – he is now almost 7 years old – so why choose to drop coverage for children that are my grandson’s age? What is the reasoning – learning for a person with autism goes on for their entire life, and insurance companies should be required to provide the necessary treatments to help them in their lives. I wonder how many people who make these decisions really understand autism at all. AS the numbers continue to rise – it will not be an issue politicians or insurance companies will be able to ignore.
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My daughter, Darby, is 9 years old and is significantly impacted by autism. She is essentially non-speaking, unable to tell me when she is hurt, tired, scared, hungry, thirsty or sad.
Please re-read that last sentence. She is 9 years old and unable to tell me she hurts.
The fact is, our children with autism are not counted amongst Vermonters as a whole. If our children had cancer, or were deaf or one-by-one going blind, I imagine the attention the lawmakers would give them would be substantially higher. But our kids are the ones without voices. Without the means to say they are scared.
As their parents, we are scared for them, and dismayed at the lack of care they are receiving from their elected stewards, those few that control the balances. To enact health care coverage that would hold private insurance responsible for ALL people, (regardless of age!) to no longer allow discrimination based on diagnosis…well, that would lower the overall costs to the average Vermonter.
Currently, my daughter has coverage through the Katie Beckett Waiver as well as private insurance. Which means what our private insurance does not cover is “supposed” to be covered by Medicaid. While our private insurance is better than most, it’s not perfect In most cases, when private insurance does not cover a service, Medicaid steps in to fund. Many services are not covered, meaning that all taxpayers are helping to fund what should have been funded through my private insurance. As stated above, dropping my daughter off my private insurance would open more doors for her for services, lower my personal out-of-pocket costs, but would raise the amount Vermont taxpayers pay to fund her care. How do I balance this as a mother first and a taxpayer second? I will do whatever brings the most benefit to my daughter, of course.
My child, my sweet precious little girl, is valued. She deserves all the same benefits any other “normal” Vermont child would receive. If, heaven forbid, the little girl that sits next to her was diagnosed with muscular disorder tomorrow, that girl would receive care through her parent’s private insurance.
My little girl, however, would be treated differently.
For the life of me, I can’t see how my little girl isn’t just as worthy as any other child with a different intensive need.
It’s time for Vermont to think pro-actively and fairly. Mandate insurance for all kids, regardless of age (because while I wish autism was something she could grow out of, it is pretty obvious that will not happen…and certainly not at age 7).
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I am the co-chair of VTCAIR – Vermont Coalition for Autism Insurance Reform. I have been a speech-language pathologist for 24 years, and work at a hospital in the Northeast Kingdom. Together, with Ron Marcellus, a parent from the South, and myself, from the North, filled in with hundreds of families in between, we have worked for 2 years to get ACT 127 as law, for all ages.
Let it be known however, that parents and professionals have wanted private insurance companies to help cover therapy services for their children since (at least!) the VT White Paper on Autism Spectrum Disorders was released in 2006 revealing the need for different types of services – and interagency collaboration – to beef up the intensity and specific types of therapy to ameloriate the devasting symptoms of autism.
Schools alone cannot shoulder the burden of cost – nor does autism end at 3 PM; Publically Funded Medicaid alone cannot shoulder the burden of cost; parents cannot lose their homes or suffer severe drops in cost of living; and private insurances MUST kick-in a fair share of the cost to help pay for therapy IF the parents request it, or need it. I no longer want to turn a parent away at my hospital speech clinic because the insurance would cover an evaluation, but not treatment, or so severely restrict the number of visits a year, recommended by their doctor and therapy team, that it is ridiculous and unreasonable for any progress to be made. It is incumbant on all agencies to be cost effective – but not unfair or unreasonable.
Thank you legislators for passing ACT 127, and making it law, starting in October 2011, to cover therapeutic services for children ages 18 months up to 6 years – we hope that with a unified health care system, the private insurance companies will help the state of VT share in the cost of treating a medical diagnosis for these older children. For less than the cost of a cup of coffee per member/per month, we CAN afford this.
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The purported figure of $64 million dollars spent on autism “services” is a gross misrepresentation.
As per the American Academy of Pediatrics, the treatment for autism is Applied Behavior Analysis and Speech Language Therapy – period. I estimate that less than 10% of the $64 million sited in the AHS report was spent on Applied Behavior Analysis or Speech Language Therapy, ergo less than 10% of that sum was spent on autism treatment. Our children have a neurological condition for which effective treatment exists. They are entitled to treatment……not “services .”
In one example of actuarial sleight-of-hand, the report included treatment costs for other co-morbid conditions that happened to be incurred by children with autism.But those medical costs ought to be classified under other the diagnoses- as I’m sure they were in actuality, if we examined the medical charts. When a child with autism is hospitalized, the admitting diagnosis is the acute condition, such as pneumonia, seizure disorder, gastrointestinal disease, etc., not autism. Autism goes in the child’s medical history. It is not the reason for the hospitalization. Hospitalization is not treatment for autism.
$22 million of the total was attributed to educational costs. But those costs are just that. EDUCATION.Special education provides access to a curriculum, not treatment. Lest anyone forget, Vermont’s special education system received a failing grade from the Federal Department of Education in 2010 (for the second year in a row.) Furthermore, of the eighteen teacher preparation programs in our state colleges and universities, only one offers an endorsement in intensive special needs. There are only a handful of graduate level courses offered in autism, all are elective, and they often have to be cancelled due to poor enrollment.It is arguable that the vast majority of Vermont teachers do not have the competencies to effectively teach our children, let alone provide treatment. It’s shifty accounting to include education costs in the purported $64 million price-tag. Education is not treatment.
So just what did that mythical $64 million go towards? Maybe with the new public records law we’ll actually be able to examine some of the sources used to write the report. Of the thirteen agencies designated by the Agency of Human Services to provide “services” to Vermonters with autism,only three have autism programs that provide actual treatment (i.e. ABA and Speech Language Pathology). One designated agency in a southern Vermont county has recently hired a full time case manager with no clinical background. Her experience with autism was as a paraprofessional in a EEE classroom. This full time state employee tells the parents of children newly diagnosed with autism that ABA and Speech Language Therapy are not available to them. She reads them notices of one day “workshops” given by other non-clinical state employees. I estimate her starting salary to be between $30 and $40 thousand dollars, including benefits. However, reading a brochure to parents is not treatment.
It’s interesting that your article appears the day after the New York Times piece describing the windfall profits insurance companies make in Vermont due to lax insurance regulations. Aetna made a profit of $150 million dollars by bundling a single block of health insurance policies in Vermont. That’s one company, one deal. Health insurance is a multibillion dollar industry. Surely, AHS does not have the temerity to suggest that private insurance companies making those kinds of profits can’t afford to cover autistic kids 6-22? The real cost is 85 cents per policy. THAT’S in the report. Did anybody read it?
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Act 127 over the last legislative session has been a political football. A simple, straight forward Act that will give treatment to many children with the medical diagnosis of autism spectrum disorder (ASD) was caught in the cross-firer of single payer healthcare.
Vermonters should not ignore the American Academy of Pediatrics recommendations of treatment for a medical condition, it is unfair and inhumane. As it stands right now most children with ASD are receiving inadequate treatment for a medical diagnosis.
Unfortunately we are thinking short-term about the effective use of our tax dollars and our children’s welfare. Without scientifically proven treatment most kids with ASD will end-up needing lifelong care on the backs of taxpayers.
Even more concerning is with effective intervention 50% of children with ASD by age eight can need little or no intervention (according to the Autism Society of America). Which in-turn saves taxpayers money in lifelong care and allowing the individual hope for a meaningful and productive life.
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here is the article Mary Kate references: http://www.nytimes.com/2011/05/09/business/economy/09insure.html. While the Aetna reference is not exactly tied to Vermont health insurance, it does raise another set of interesting questions. Anne, this looks like another investigative report in the making.
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Many who havealready responded to this posting know me and know that I am usually a very professional, well-spoken advocate. I do not go off like a time bomb, so this may seem a bit unlike me; but I am finding it difficult to keep fighting, so I have to get off saomething that is weighing on my chest.
I witnessed the epitome of descrimination and disrepect in the last days before the end of this most recent legislative session.
It’s noted here that this autism legislation is being played with like it were a football. The reason? Cost.
At the same time, there were advocates shouting on the Statehouse lawn about another reform issue: one of covering undocumented (nee: illegal) workers (nee: aliens) under the new single-payer system. This, too, I am sure will stick a thick straw into the same government cup as coverage for autism.
Yet (and I mean no disrespect), the legislative body had no trouble considering the undocumented worker issue (if only for the time being), while efforts to protect those with autism have been tabled (if only for the time being).
I am no bigot. I am language school-trained and speak fluent Spanish daily in my job, have lived in Panama, have visited other areas in Central and South America, and even appreciate many of the intricacies of Latin American culture (did you know Cinco de Mayo is celebrated more in the US than in Mexico?). I understand both why undocumented workers flock here, and why they are an invaluable resource to our farmers.
But, to provide guaranteed needed medical coverage to those who are not legal citizens (and by definition are breaking the law), while at the same time ignoring the needs of my child my child is descrimination at its worst.
Even a letter I wrote to the Governor was responded to with “Doug Racine and I (two people in the government who know less about autism than y of us do) are seeking out alternative solutions; we know what’s best for you and your family; please wait a little longer”. I was told that we all have to tighten our belts because there’s no money for people like my son. Yet there is for people who illegally came across the border.
So then, let me recap: if I were to rescind my citizenship, take up citizenship of another country, and later return here illegally to work on a farm, I could get insurance coverage for my son. Let me pack my bags.
While I know that this response was atypical of me, I make no apologies. This descrimination has gotten out of hand.