This is a guest post from Mark L. Olson in response to the New York Times article, ‘Navigating Love and Autism.’ Mark lives in Henderson, Nevada where he is the only parent of a 16 year old daughter with autism; Chairperson, Community Living & Employment Subcommittee, Nevada Commission on Autism Spectrum Disorders; and, President & CEO, LTO Ventures, a 501(c)(3) nonprofit company developing live/work/play communities for adults with autism.
I read with mixed emotions the December 26th New York Times article “Navigating Love and Autism” about Jack and Kirsten, a young couple with Asperger’s Syndrome discovering how to have a relationship with each other. The romantic in me found their story inspiring and hopeful. But as the only parent of a teenage daughter with autism, another part of me felt frustration about the lack of attention to and help for autism’s “fly-over” population — the huge group of teens and adults who are often nonverbal, may never expect to live independently, yet deserve the chance to choose the kind of life they want to live.
“Fly-over” is a term I heard often growing up in the Midwest and attending University of Kansas. It refers to the majority of the US between the East and West Coasts that airline passengers look down on when they fly over. It also refers to a mindset in the media that the most valuable audiences are located in New York and Los Angeles, and to which their programming overtly caters.
Autism is a broad spectrum disorder just as the U.S. is an expansive land mass and melting pot. A favorite expression in our community is that “if you’ve met one person with autism, then you’ve met one person with autism.” Our community and efforts to help persons with autism benefit from all the awareness we can generate, but sometimes it feels like that attention falls largely onto two ends of the spectrum.
At one end, thanks to organizations like Autism Speaks and others, kids as young as 18 months benefit from more research dollars than ever directed toward finding the cause of and a cure for autism, while insurance mandates are in effect in the majority of states that emphasize funding for ABA therapy and early intervention, diagnosis, and treatment.
At the other end of the spectrum are the Aspies and HFA teens and adults like Jack and Kirsten who are the focus of media coverage, movies, federal programs such as Medicaid and the President’s Year of Community Living. They are also the primary beneficiaries of the Protection and Advocacy (P&A) Network created by Congress and self-advocacy organizations bent on eliminating all barriers to living and working exactly the same lives as “typical” Americans.
But what about the fly-over population? My daughter is one of them and we live this struggle every day. (I also run my own 501(c)(3) nonprofit company developing live/work/play communities for adults with autism and chair a subcommittee for the Nevada Autism Commission on community living and employment.) I see this issue from many perspectives and I’m increasingly disheartened by the chasm of resources and choice expanding between our community’s newest affected and our most capable.
My daughter is 16 and nonverbal, although she can hear and understand some of what is said to her. She’s not high-functioning enough to enjoy true independent living, and diagnosed at age 12 she was too old to benefit from aggressive early intervention protocols. I expect she will stay in her special needs school until her IDEA eligibility runs out and we are planning for guardianship now. But I’m also 39 years older than her and while I like to believe I’m immortal, I’m pretty sure I’m not. So that means planning for where she is going to live, what kind of work she might do, and what chance at a social life she can expect.
Let’s start with housing options. My daughter deserves the right to choose any residential setting in which she wants to live. It is estimated that 85% of adults with autism live with parents or a family member until they can no longer be taken care of. As with many kids with autism, there are daily living skills she does well, and others (bathing, feminine hygiene, house cleaning) that are a challenge. Some disability self-advocates argue her only option outside of my home should be in her own apartment or home no closer than 1000-1500 feet from any other disabled person.
She can’t live alone in a scattered site apartment because she doesn’t know how to cross a street safely, or how to avoid neighbors who might bully, exploit, or abuse her. It’s a ludicrous notion to expect her neighbors to be her “it takes a village” safety net. She can feed herself, but she cannot use a stove or microwave to prepare a hot meal. A setting where she could go to eat or pickup meals of her choosing would be ideal.
A planned residential community optimized to accommodate her autism such as a disability-based campus or farmstead would be a great solution. Unfortunately, Medicaid, certain self-advocacy groups and the P&A Network are doing everything they can to deny her freedom of choice and impede development of innovative settings. (Read more at “Choice v. Olmstead“)
Now let’s talk about work. My daughter is blessed with exceptional physical strength and decent gross motor skills. With supervision she can do fine motor projects and follow multi-step instructions…for a while. But she cannot speak, read or write. She will never be able to pursue competitive employment on the open market, but that doesn’t mean she can’t earn a minimum or higher wage. A work environment created to accommodate and develop her abilities would be ideal. But again the same forces are at work to eliminate these optimized settings as discriminatory.
Would she like a social life? A relationship like Jack and Kirsten? I don’t know. I do know she is highly sociable and enjoys the company of affected and typical kids and adults. A setting where she could freely walk around, meet up and hang out with persons like her and enlightened members of her surrounding community would be ideal. But transportation, availability of programs, and lack of funding marginalize anything except a public park or shopping mall.
Jack and Kirsten’s story is informative and heartwarming. But as we enter 2012, I implore the autism community, media, government and especially those self-advocates who resist progressive thinking and innovation, to not forget the impact they have on our “fly-over” population. Their story deserves to be told too. They deserve the right to choose how they want to live.
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In early November, 2011, Dad and I loaded a large painting I’d created for Autism Speaks into our minivan and drove the 1100 miles from Missouri to New York City to present it to them. Because the painting was so big, it probably took me longer to complete it than any other painting I’ve ever done. In the middle of the painting is the blue puzzle piece that is the symbol for Autism Speaks. The overland around the puzzle piece is the color complement of blue, variations of the color orange. Small hearts are lined up throughout the painting; in the orange area the hearts are warm colors; red, orange, and yellow; in the puzzle piece, the hearts are cool colors; green, purple, and blue. The hearts are intended to depict the feelings that people with autism have that many people don’t realize they possess. They also symbolize the love and care that parents, teachers, and other mentors give people with autism.
I presented this painting in a small conference room in the Autism Speaks offices. Just as you wrap presents up for birthdays and holidays so whoever it’s for can’t see what it is until it’s time, I put a big cloth over the painting as we brought it in so I could “reveal” what it was when I got there. It was to be hung in that same room, and I understand that in honor of that painting, they renamed it the “Taylor Crowe Conference Room.” I was videotaped unveiling the painting and talking about it. A few short hours later, an editor at Autism Speaks put that footage on the web for people on the internet to enjoy.
Although I’ve had my driver’s license for 13 years, because of my autism it has taken longer for me to master the art of driving than most people, so I still sometimes need parental supervision when I drive. I continually get better and better. On this trip I got lots of highway driving in, but I also felt I needed experience driving in New York City, so I drove with dad supervising! It wasn’t so much dangerous as it was slow; it took forever just to get in and out of one street! Although I needed the experience and Dad said I did great, I never wanna drive in New York City again, it’s just too nerve-wracking! I was always told that defensive driving is hard with autism because those of us with autism expect other drivers to follow the rules, but drivers in Manhattan don’t drive defensively, either! They drive offensively!
Former NBC head Bob Wright founded Autism Speaks after his retirement circa 2005 to spread hope and seek help for his grandson who had recently received an autism diagnosis. Wright and wife Suzanne are very committed to helping their grandson and future generations of autistic children. I did not see the Wrights on the trip when I delivered the painting, but I did meet them in April, 2010. On that trip I was involved in a dinner with retired basketball stars from the NBA, including my cousin who played for the Knicks, Bill Bradley. I got to introduce him when he spoke that evening. Since Bradley and Wright know each other and both have relatives with autism, that evening was very important to them. I was quite proud to be there.
This is a guest post by Shelley Hendrix, the Director of State Based Advocacy at Autism Speaks.
On a gray, drizzly Tuesday, I rode an Amtrak train from New York City up to Albany to meet with parents and legislators who want to bring autism insurance reform to the Empire State. As the tracks skirted the Hudson River, I thought how much my son Liam, who has autism, would enjoy this trip. Staring at the view rushing by. Checking out the snack car. Asking a million questions of the conductor or people who just want to listen to their iPods.
Then I wonder why they are going to Albany.
Is what they are doing in the Capitol today just as important to them as this is to me?
It took trains, planes and automobiles to make this day happen…and luckily, so far, no boats. Back home the Mississippi River in my hometown of Baton Rouge was cresting. Families west of me flooded by opened valves in the Morganza spillway. I looked at the Hudson a little differently on this trip – watching it flow along, unobstructed, to the Atlantic Ocean – mighty and unstoppable. Rivers respond directly to their environment generally maintaining their course but occasionally overflowing their banks and destroying everything in their path.
Passage of reform in New York State is not only incredibly important for New York families of children with autism but a key state for the rest of the country as well. By securing New York, our community sends a clear message to Congress that discrimination against people with autism must end – now. Additionally, it will provide coverage for people who live in states that have not passed reform yet provided they work for a company headquartered here.
For some kids in Utah, Ohio and Georgia, to name a few, relief might be on the way a little early.
I came to Albany to meet with parent advocates and network with other groups to create one formidable force – one mighty and unstoppable river of advocates made up of parents like those who drove up braving the inclement weather and apparently an alligator on the Long Island Expressway.
I also came partly to remind this otherwise progressive state that they have yet to do what 26 other states including Arkansas, Montana, West Virginia and my own home state of Louisiana have done.
The autism community was divided over support for last year’s bill and the river of support was directly affected by the environment. The initiative destroyed as the constituent river forked and flooded the Legislative and Governor office phone lines with calls both in extreme support and determined opposition. In the end, who wants to fund an initiative like this if the community it benefits is fighting about it. In this economy with scare resources, it’s just easier to fund initiatives with a more unified front.
This year though the river is moving along smoothly, staying within its banks. Community leaders from various organizations painstakingly compromised on language introduced one bill this year to move forward in a unified manner. But in order for this bill to become law, New York politicians will need to hear from their constituents. And our voices will have to drown out opposing forces outside the autism community.
Everyone is busy but we hear time and time again from every nook and cranny around the United States that face to face meetings with legislators are the most effective thing you can do for change. Every day the insurance industry has lobbyists who stroll the halls in Albany working against your kids in New York. If you want this bill, with the language the way it is now, you will have to stroll the halls or meet with your legislators when they are back in the district.
After riding on that train on Tuesday, I realize firsthand how hard it is to physically get to Albany. But I also learned that close to 1.5 Million people live in the Albany metro region. To those families, I am calling on you personally to do what you can to get down to the Capitol more regularly during the session. Meet with legislators and their staff. Please be our ground forces for families like yours who live 5, 6, 8 hours away on the other side of the state.
For the rest of New York, you are not off the hook! If you want this I hope over the next month you are prepared to make countless phone calls to support them. Make sure you are registered at www.autismvotes.org!
Everyone gets nervous talking to politicians but don’t worry. If you have never done this before, we will teach you what you need to say and how to do this. We just need to know who is willing to commit to working this bill in the halls of the Capitol over the next six weeks.
If you live in Albany and want to become part of our ground force operations, please email me at Advocacy@autismspeaks.org.
This post is written by Peter Bell, executive vice president for programs and services for Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his family reside in New Jersey, his oldest son Tyler has autism.
At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders. To accomplish this mission, we have devoted much of our advocacy efforts over the last several years to ending the routine discrimination against people with autism by health insurers. To date, twenty-three states have enacted legislation requiring health plans to cover medically necessary, evidence-based autism treatments. Currently, the State of New York sits on the brink of passing what could become one of the most comprehensive state laws passed thus far.
For several years, families, legislators and advocacy organizations in New York have been working diligently towards the passage of meaningful autism insurance reform legislation. S7000B is the product of this mutual effort. Passed unanimously by both the New York Assembly and the New York Senate, this legislation would at long last require coverage of evidence-based treatments like speech therapy, occupational therapy, physical therapy and applied behavior analysis. S7000B also insures that coverage for behavioral therapy cannot be denied because it is deemed educational or habilitative in nature. Just as important, the bill has no annual monetary coverage limitations or limits based upon age. It also contains provisions to ensure that existing services covered under health insurance as well as services provided through an individualized family service plan, an individual education plan or an individualized service plan are continued.
If you don’t live in New York, you may be wondering what this legislation has to do with you. Although this bill originates in New York, advocacy from stakeholders all across the country is critical. Here’s why:
If you happen to live in one of the twenty-three states that have enacted an autism insurance bill, then you know the impact this legislation can have on the families that now or soon will benefit. They will no longer need to worry about using all their financial resources to pay for evidence-based therapies that their children with autism need.
If you live in one of the twenty-six states that have not yet passed autism insurance reform, then you know the heartbreak a family faces when they receive denial after denial from their insurance company for treatments their child needs to live a full life, join their peers in school, and interact with their siblings. And, if you have a health plan that is not covered by state law (if, for example, your employer has a self-funded or ERISA plan), then your help is needed most of all. Enactment of autism insurance reform in New York will mean that our community is one step closer to being able to make the case for reform at the federal level. Federal autism insurance reform will ensure that every family in America will get the insurance coverage for autism therapies that they need and deserve.
At the end of the day, it all comes down to ending the discrimination families living with the challenges of autism face when dealing with health plans. As one New York father pointed out to me recently, individuals with autism are simply looking for equality. He went on to emphasize how this piece of legislation would require coverage for evidenced based treatments, equality in its truest sense. He spoke from an extremely personal place, sharing how last year he was diagnosed with Non-Hodgkin’s Lymphoma. His course of treatment, which was evidence-based, was covered by his health insurance and because of this treatment, he is doing well. He went on to ask the obvious question: why his beautiful nine year-old son with autism was not afforded the same opportunity?
It’s time for this discrimination to stop. You can help by emailing Governor David Paterson and urging him to sign S.7000B into law. He needs to hear from you – as a member of the nationwide community of families and loved ones of individuals with autism – even if you do not live in New York. Please take two minutes to make a difference today.
Please help us today in New York to create a better tomorrow for families in all states. Thank you.
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This “In Their Own Words,” is written by Patty Dobbs Gross.
Danny and I were riding on the subway last week, glad to have snagged seats next to each other, happy to be together on the way to enjoy both summer in the city as well as a ballet at the Met; we both share an appetite for the Big Apple as well as for the visual delicacy of dance…
The man coming toward us was very tall, with a heft to his body and a slice of rolling skin uncomfortably visible between shirt hem and ragged sweatpants. I was also inexplicably encased in sweatpants that had seen better days on this sweltering July day, and this was what I was thinking when the man suddenly looked up, raised his voice and addressed the entire subway car in one fell swoop of a sentence: “Attention…may I please have your attention?”
He had clearly said this before, and all eyes swung obediently to his commanding presence. “I am homeless and in need of change, even small change, to attend to my needs.” This is all I can remember him saying verbatim, for the mention of his needs dropped a curtain in my mind; he seemed much too tall, confident and well fed to be truly needy; at least to be significantly needier than my own family, quite house poor and college drained in the suburbs…
Out of the corner of my eye I saw Danny reach into his pocket for change; without a moment’s thought I gently touched his hand to communicate for it to still. Danny has autism and despite this fact (or because of it) he now attends USC’s School of Cinematic Arts, earning an MFA in film editing. His only adjustment to life at USC was his habit of giving cash to the strings of panhandlers that ring its iron gates…he called me one night and sheepishly confessed to doling out nearly $80 in cash to a woman who was homeless. After she took the money she claimed to have an inheritance she could share with him if he would just give her the $100 it would take to clear the court costs. Danny didn’t care about the inheritance, but he worried for her because she couldn’t reach this money without this initial outlay of cash; he wondered to me, in the voice of someone hurt by the level of misunderstanding between us, shouldn’t he give this relatively small amount of cash to her so that she could access this money and get off the streets? Doesn’t that make logical sense?
This was the moment I realized that although Danny never abused drugs or alcohol throughout his teenage years, he clearly still needed to learn how to just say no.
The man was moving toward us as he strode confidently down the center of the subway aisle, holding the overhead silver rings to steady himself with a steady rhythm as the car rollicked back and forth, but he stopped his journey when he noticed my hand touching Danny’s. He met my eyes with a snap.
“Are you his mother?” the man asked me, point blank and direct.
“Well, maybe that’s true….” I said, laughing a bit as if he had told me a silly joke. All eyes in the subway car were now on me while I struggled to hold his eye contact, my heart rapidly picking up pace. “Or maybe not.” It wasn’t that I wanted to be provocative or to attract attention, but that I didn’t want him to know anything about me whatsoever, and being Danny’s mother is at the white hot core of my being.
The man stopped his journey forward then, a move that struck me as mildly aggressive as he loomed over my sitting body. At my age my body is apparently sinking slowly into itself anyway, but he made me want to fold myself up in a hurry, but I happen to be Irish (and this explains a lot.) So instead of fading away I held his gaze for another moment while I told him: “That’s mine to know.”
He held my gaze pointedly for another moment, but then shook his head and broke eye contact (first! ;-) to resume panhandling; soon only his thrusting cup was visible, although his words rang out clearly as he altered his spiel to say, “Well, I wouldn’t let my mother stop me from doing what I wanted, and I wouldn’t let my aunt or my neighbor or anybody stop me either…I’m my own man…”
I tasted the bitterness of my sarcastic comment before I swallowed it, along with my considerable fear, to simply look down and pretend to study my shoes (they were black Velcro sneakers, cheap but sturdy, and quite handy if you need to dash off in a hurry.) I was old enough to know that you never poke the bear if you can possibly help it, and I was already figuring out how I’d shape this experience into a lesson for Danny if we survived to make our train ride home to Connecticut. It would definitely end with the moral of the story being why he should not give money to panhandlers.
When we left the subway car two stops later, on the grimy stairs that lifted us to the light of day, I whispered to Danny, “You didn’t take that stuff he said about manhood personally, did you?”
“What stuff about manhood?” he asked me, genuinely confused.
I remembered then what I sometimes forget, that despite his success in life Danny still doesn’t learn much from his auditory pathways; in fact, he hadn’t even processed this man’s taunting words once he was out of his personal line of sight. The visual information of the scene he later relayed to me was letter perfect, and he could describe the man’s outfit much better than I in the short amount of time he had attended to him. Danny is not cured of the sensory integration difference he was born with despite his successful life, nor has his gift/curse of not attending to social subtleties vanished; he has only learned to compensate for his inherent and supposed weaknesses and capitalize on his considerable strengths the way he had learned to do before he even crafted his first original sentence.
And he might have continued to attend to what the man was saying if he had kept his voice loud and commanding, but Danny didn’t end up processing any of his later words that were spoken in a sweet and saccharine tone, despite their mission to wound Danny’s ego in order to shame him into giving him money; the honey coated but cutting words had instead gone blessedly over Danny’s head. I smiled as I thought of this man being hoisted by his own petard rather than what might have happened if he were clumsily called out by me, and I silently vowed once again to remain quiet when my ego struggles to speak, as so many previous life lessons have also attempted to teach me.
I have been a slow study…
I raced up the stairs and joined the frenzied and sizzling pace of New York City in the summer, focusing on my gratitude for the breeze and my son beside me as we raced together toward the Met… just minutes later we were watching a ballet that it took a month of Sunday night hot dogs to afford to witness, and I swear I didn’t even notice the looks I must have received by virtue of my scruffy sweatpants and Velcro shoes before the lights went down; Danny and dance were the only things on my mind for the next few blessed hours, as I considered the beauty of all the lilies that graced our field.
Autism Speaks EVP of Programs and Services Peter Bell, spoke at NY State Sen. Gillibrand’s press conference on Wednesday, July 7, to support NY State insurance legislation. Below is an excerpt from his speech.
When the CDC released the new rates of autism in the U.S. last December, I remember staring at my computer in disbelief for what seemed like an eternity. My “autism life,” which dates back to 1996 when my now 17 year-old son was diagnosed, flashed before my eyes. All I could see were numbers
1990 1 in 2,000
2000 1 in 500
2004 1 in 166
2007 1 in 150
2010 1 in 110
After gathering my composure, I opened a spreadsheet on my computer and did a few more calculations:
- Using the new autism prevalence of 1 in 110 children, I calculated that among the estimated 4 million births in the U.S. each year, approximately 36,500 children will eventually develop an autism spectrum disorder.
- Since there are 525,600 minutes per year (365 x 24 x60), that means that a child is diagnosed less than every 15 minutes (14.45 minutes to be exact).
- Today alone, roughly 110 families will hear the words “your child has autism.” 70 of those children will be boys.
As devastating as this sounds, the news gets even worse. When a child is first diagnosed, doctors often struggle to tell the parents what they should do. Years ago, many parents were told there wasn’t anything they could do. Autism was not treatable. Fortunately, we know this is NO LONGER true. Autism IS treatable, especially when diagnosed early.
Another reason why doctors are reticent to suggest or prescribe a treatment regimen for autism is because they know these treatments aren’t always available due to limited access. That’s because historically insurance providers have rarely covered the cost of autism treatment. For years, families have endured marketplace discrimination when it comes to getting the cost of medical treatment for their children’s autism covered even though most of them have health insurance.
This is one of the biggest reasons why autism ends up being such a financial hardship on most families. Families are mortgaging everything including their futures to help their children get better. Autism Speaks recently learned about a family in Florida that is considering giving up custody of their child with autism simply because they can no longer afford to provide the treatment their son with autism needs.
But the tide is changing. Prior to 2007, only Indiana had an autism insurance law that required health plans to provide coverage for evidence-based medically necessary treatments. Since then, 20 more states have enacted laws. New Hampshire and New York are on the verge of joining this elite group of states who have decided to take a stand in support of enhancing the futures of their families living with autism. We urge Governor Paterson to swiftly sign the New York bill so insurance coverage of autism treatments can become a reality for the families of New York and allow the children with autism of this great state to reach their potential.
But states insurance laws are not enough. Many health plans are exempted from state regulations. These self-funded plans, or ERISA policies, are subject to federal laws and thus far we do not have federal health care reform that requires these plans to provide such coverage for autism treatments.
A key provision in the recently enacted “Patient Protection and Affordable Care Act”, or what most of us call health care reform, does require autism behavioral health treatments to be included as an essential health benefit, but this rule applies only to plans offered in the new health insurance exchanges and certain plans offered in the individual and small group markets outside the exchanges. Autism insurance reform is still desperately needed for other plans, including self-funded plans.
On behalf of the million plus families in America who are doing their best to help their children live with autism, we thank you Senator Gillibrand for your strong commitment to bring autism insurance reform to the autism community.
To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org
This is a guest post by Lorri Unumb, Autism Speaks senior policy advisor and counsel. Lorri also teaches “Autism and the Law” at the George Washington University Law School.
In the past three years, 20 states have passed laws requiring health insurance policies to cover individuals with autism and the treatments prescribed by doctors for autism. The New York legislature is on the verge of passing one of the broadest autism insurance reform bills in the nation, and yet some members of the autism community oppose the bill, largely because of its broadness. I write to offer some historical and legal perspective on a bill that embraces a broad approach to legislating.
I have been following New York’s autism legislation with great interest, not only because of my job as policy advisor with Autism Speaks but also because my son with severe autism has health insurance that is governed by New York law. I have a vested personal and professional interest in the legislation.
Further, I have a somewhat unique historical perspective, given my role in helping to spur the national movement toward autism insurance reform. In 2005, while I was a law professor, I wrote legislation in South Carolina to require health insurance coverage for autism. The bill broadly required that:
A health insurance plan as defined in this section must provide coverage for the treatment of autism spectrum disorder. Coverage provided under this section is limited to treatment that is prescribed by the insured’s treating medical doctor in accordance with a treatment plan.
The bill did not list the particular treatments that insurance must cover; rather, it required insurers to cover whatever the doctor prescribes, within reason. It contained language that protected the insurers from having to pay for treatments that were unnecessary, not evidence-based, provided by family members, and the like:
[T]he coverage required . . . may be subject to other general exclusions and limitations of the health insurance plan, including, but not limited to, coordination of benefits, participating provider requirements, restrictions on services provided by family or household members, utilization review of health care services including review of medical necessity, case management, and other managed care provisions.
This legislation passed in South Carolina in 2007, and since that time, children with autism have been receiving meaningful coverage for mainstream treatments prescribed by their doctors, including psychological care, speech therapy, occupational therapy, physical therapy, and the most commonly-prescribed treatment for autism, applied behavior analysis (ABA) therapy.
The South Carolina law is very similar to Indiana’s autism insurance statute, and individuals with autism in Indiana have likewise been receiving coverage under that state’s broadly written bill.
Since 2007, a number of states have passed autism insurance bills that do not embrace the broad approach; instead, they laundry-list the treatments that must be covered. A typical list from these states includes psychological care, psychiatric care, therapeutic care (OT, PT, ST), pharmacological care, and behavioral therapy (ABA). Also, most bills that have passed since 2007 contain significant limitations of coverage, such as a cap that limits spending on ABA therapy to $50,000 per year or an age cap that requires coverage only through age 21.
In 2009, there were pending in the New York legislature four different autism insurance bills, three of which contained a laundry-list of treatments to be covered. The lists varied considerably, and members of the autism community could not agree on how expansive the list should be. The bills also contained various age and dollar caps on coverage.
In October 2009, the Senate Insurance Committee conducted a hearing on all of the pending autism bills. The all-day hearing included testimony from dozens of witnesses and was extremely comprehensive.
After hearing testimony on the competing bills, the committee chair decided to craft his own bill, which returned to the broad approach of merely legislating coverage and leaving for another body (a regulatory body) the exact specifics of the coverage.
As a parent and a lawyer, I support this approach.
By necessity, legislators are generalists and should not be called upon to list the treatment options from which doctors may choose, or to weigh the evidence supporting one medical treatment against the evidence supporting another. It’s not their job. In the context of insurance legislation, their job is to broadly require coverage if they find coverage lacking and within the public interest.
Critics of this bill don’t like the broad approach. They want the certainty of a legislative laundry-list, as has been provided in numerous other states. However, critics fail to acknowledge that the New York autism community itself could not agree on the list and such disagreement is what led to the broad bill in the first place. I have worked with the autism community in almost all of the states that produced laundry-list-type bills and statutes, and never was there dissension within the community that would have required the legislature to choose among various lists.
Critics lodge several other complaints, too.
First, critics don’t like that the bill limits the insurers’ responsibility to covering treatments that are “evidence-based, peer-reviewed and clinically proven.” Critics say this tripartite standard creates an impossibly high threshold that no treatments will meet.
It is not uncommon for states to limit insurers’ responsibility to covering treatments that are “evidence-based,” which I believe is an appropriate limitation. Generally, premium-payers expect insurers to cover mainstream treatments but do not expect insurers to cover treatments that have not been empirically validated.
The issue in the New York bill is the addition of the terms “peer-reviewed” and “clinically proven.” The addition of these terms does not create a higher standard. To be “evidence-based,” a treatment must have been studied and those studies must be have been published in peer-reviewed journals. Thus, “evidence-based” subsumes “peer-reviewed.”
Similarly, “clinically proven” simply reinforces the concept of “evidence-based” treatment but does not set a higher standard of review.
Critics of the bill have yet to name a single autism treatment that would satisfy the traditional standard of “evidence-based” but would not satisfy the tripartite standard.
It seems that what the bill’s opponents really want is coverage for treatments that are not evidence-based. Certainly, there are many protocols that parents of children with autism try on their children that are lacking sufficient evidence of efficacy. I have used some of them with my own son, and I don’t question the intentions of other parents who do so. But I understand that insurers must draw the line somewhere, and “evidence-based” is where the line is traditionally drawn in health insurance.
The overall success of the autism insurance reform movement over the last three years stems largely from the fact that the autism community has not sought special treatment in insurance matters; we have sought equal treatment. All we have asked is that the mainstream treatments that our doctors prescribe for our medical condition be covered by insurance. To have continued success, we must be willing to limit the treatments for which we seek coverage to those that are evidence-based.
Opponents of the autism bill also criticize “the establishment of a four agency committee . . . to pick out whatever ‘science’ they believe in.” Actually, the bill does not establish a four-agency committee. It simply directs the Commissioner of Health to promulgate regulations (a standard practice following new legislation) and directs the Commissioner to consult with three other relevant agencies in the process. In a field where families and services often suffer because one agency never knows what another agency is doing, it is refreshing to see a collaborative process established from the outset.
Further, I am puzzled by the fear of having the Department of Health determine what treatments must be covered. The opponents wish to have a legislative body (generalists) determine a list of treatments that must be covered, but they fear a regulatory body (health specialists) doing the same?
Finally, opponents of the bill apparently fear losing coverage that currently exists under their health insurance policies or failing to obtain coverage for services like anesthesiological and endocrinological care. S.7000B/A.10372A specifies that it “shall not be construed as limiting the benefits that are otherwise available to an individual under the policy.” As such, if anesthesia is generally covered under a policy, it will still be covered without regard to the list of treatments that the Commissioner of Health develops.
Proponents of S.7000B/A.10372A, who are also parents of children with autism, do not wish to limit the treatments that any family affected by autism wishes to use with their children. Nor do we wish to narrowly restrict what doctors may prescribe for their patients. Rather, we wish to support a bill that is likely to pass – a bill with reasonable limitations that are fair to all parties. Proponents see advantages to broadly-written bills like S.7000B/A.10372A, even for those wishing to include treatments outside the mainstream. For instance, if new treatments emerge, or existing treatments go through the rigors of becoming evidence-based, these can be added through the regulatory process to the list of treatments that must be covered without the need for going back to the legislature to amend the law.
The New York autism bill is good policy. It covers individuals with autism of all ages. It does not impose artificial dollar caps on treatments, as many other states’ autism laws do. It asks the legislative and regulatory systems to operate together, as they were designed to do. And it will offer much-needed relief to individuals with autism and their families, as citizens in 21 other states are now receiving.