I feel hope every year at the Greater Hartford Walk Now for Autism Speaks.
I feel hope when my son tells me he is “proud he has autism.” I feel hope when his brothers say they had fun at the Walk for the first time.
At this year’s Walk, hope warmed me every time I personally met a mother I’ve spoken to after her child was diagnosed and she said, “Thank you.” Hope fed my tired spirit when my son’s friend and his entire family joined our Walk team. Hope inspired me, as 8,500 people lined up to walk for their sons, daughters, grandchildren, nieces, nephews, friends, and neighbors. Hope brought me to my knees as I watched families simply “be” with autism, not afraid of judgment or criticism. And hope brought me to tears as I gathered our legislative champions who I have worked so hard to get to join in the fight for our loved ones.
In 2009, Connecticut became the 13th state in the nation to require private insurers to cover the diagnosis and treatment of autism. Enactment of this bill finally ended autism insurance discrimination in Connecticut, but more importantly it brought hope to thousands of families.
Autism is now a buzz word in our state capitol of Hartford. Legislators are taking note of its impact on their constituents. We have champions who know our struggles, even know our kids’ names.
There is so much more to do to help the nation’s families affected by autism, so much more to do in Congress and in our state capitols. With hope in our hearts, we can and will prevail.
Hope is why I walk and it’s also why I advocate. Hope will be why I walk and advocate, until there is nothing to left to walk and advocate for.
Christopher Reeve said, “Once you choose hope, anything’s possible.”
I choose hope.
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 visitwww.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.
This is a guest post by Josh Cobbs, Autism Speaks Iowa Chapter Advocacy Chair.
When Senate File1/House File 1, more commonly known as Drew’s Bill, was introduced in the Iowa Legislature in 2009, it was an unexpected gift. The autism insurance reform bill, sponsored by Representative Ray S. Zirkelbach and Senator Daryl Beall, was one of the first pre-filed bills introduced in the legislature that year and we hoped that this early action was a good omen. The Iowa autism community had tried many times in previous sessions to get a bill introduced with no luck. As it turned out, getting the bill introduced would be the easiest part of this long journey.
Just as quickly as Drew’s Bill was introduced, it was killed by the Senate Commerce Subcommittee. That was a hard day. I, along with so many other parents, families and advocates could not understand why legislators did not see the merit in our case for autism insurance reform. Why did they not understand that requiring that health insurance companies provide children with autism spectrum disorders coverage of medically necessary, evidence-based therapies would not only lead them to live a better life now, it would also save the state money on special education services, institutionalization, and adult services later? That same day advocates became intensely committed to working over the summer to educate legislators on why insurance reform was needed.
With the education underway, we went back to the Senate in 2010 to again make our case for reform. This time, we were joined by several key players, such as Lorri Unumb, Senior Policy Advisor and Counsel for Autism Speaks, Judith Ursitti, Regional Director of State Advocacy Relations for Autism Speaks, former Lieutenant Governor Sally Pederson, Senator Beall, as well as many others that continued to help push for passage of reform legislation. The first hurdle was the Senate Finance Subcommittee. The Subcommittee hearing was an all day event. By the end, we were exhausted, but elated with the unanimous yes vote to move our bill to the full Finance Committee. With the momentum of the Subcommittee vote, we easily passed the full Committee and then the full Senate. The autism community was ecstatic. We could finally see real change on the horizon, but there were still hurdles to cross and the bill’s future was still in jeopardy in the House.
The Iowa House was deeply divided on the bill. HF1 was scheduled for a House Commerce Subcommittee hearing that would become one of the craziest days thus far in our push for autism insurance reform. The day of the Subcommittee hearing, advocates packed the room. We knew the bill was scheduled for a vote and that the fate of our effort lay in the hands of the Subcommittee members. In the end, the Subcommittee refused to vote. In doing so, they effectively killed our bill. Even with all the momentum from the Senate passage, all of the education on the issue over the summer, all of the years of activism, hope and prayer from families in the autism community, the Subcommittee would not allow the bill to move forward.
Advocates refused to give up hope. After going through so much, we just had to get something passed this year. They say that where there a will, there is a way and for us the way was to include autism insurance reform in the Standing Appropriations Bill, Iowa’s version of the state budget. Our legislative champions submitted the language and advocates began to contact their Representatives to secure it in the appropriations bill. It worked! In a press conference to announce the details of the final appropriations bill, a reporter asked, “what about autism?” Leadership responded, “Autism is in.”
Advocates and lawmakers agree that more work is needed to cover the entire Iowa ASD population. At this point, the bill will only cover state employees, but it is a good first step to give some families the help they richly deserve and begin Iowa on a road towards real and full reform. The passage of the Iowa bill is a testament to the persistence of families in the autism community and the determination of our legislative champions to provide help. They refused to take no for an answer and did everything possible to ensure that our bill and our effort survived.
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 visitwww.autismvotes.org
A three-year lesson in democracy and autism in Missouri closed in twenty-five minutes on May 12 when HB 1311 passed the Missouri Senate after passing in the House, minutes prior. The bill, which will require health insurance coverage of the diagnosis and treatment of autism, then went to the Governor for execution into law. After the filing of countless bills over the last several years that received the attention and collective efforts of Missouri’s autism community, companion bills in the State Senate and House finally allowed Missouri to go “green” in 2010.
I entered this process in the spring of 2008 when I contacted a state representative and a state senator to consider filing bills. In both cases, a bill was filed. I was thrilled and I thought the proverbial train had finally left the station! However, I learned all too quickly that I had no control over the train and nobody in the legislature seemed to care about my train. 2008 proved to be more of a coalition-building year. The legislature adjourned in May 2008 without action on the bills. Even so, I learned that there were countless families and organizations in the autism community who supported this autism insurance reform legislation, but had never collaborated on such a matter.
With the introduction of Lorri Unumb of Autism Speaks to the process, a group of ten or twelve people gathered in the summer of 2008 to draft a bill that everyone could support. The draft bill went through countless revisions to reflect the input of the autism community in Missouri. The result of this collaboration led to the filing of bills in the House and Senate in 2009. These bills were heard in House and Senate committees and the autism community began and sustained a more concerted and coordinated effort. Even though the 2009 bills did not see passage, awareness was raised at the state capitol about the issue and need for autism insurance reform for families in Missouri.
Our coalition remained strong and resilient as we gathered again in the summer of 2009 to modify bill that had been introduced in the previous legislative session. With another year of experience in our pockets, along with bills filed in both chambers that had strong support from Republicans and Democrats, as well as strong medical, legal and moral arguments that lent support to each word of the bills, we went to work as a community to prepare for the 2010 session. From all corners of the state, we worked together on weekly phone calls, attended hearings as a group and pushed for passage as one community voice.
With the amount of awareness that had been raised during the last two years in the legislature and with the strong vocal support of the governor, we thought we might see passage of our bill as early as the first half of the 2010 legislative session. When this deadline passed, our coalition continued to fight for passage. On the third to last day of the session we finally watched our bill pass the legislature. While passage of the bill brings insurance coverage to the families that need it for diagnosing and treating autism, Missouri autism community benefited from this experience in a way that is even more significant. We have formed a coalition of families and organizations that have learned how to work together to bring about an answer to a community problem. With passage of autism insurance reform behind us, we are a community of friends and colleagues who can now work together in the future to achieve other objectives that will be of importance to families and people with autism. This is the lasting legacy of our efforts that can span generations, just as the new autism insurance reform bill will help generations of children with autism to come.
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 past April, for the first time in my life I learned what it truly means to live in a democracy. Since the start of 2010, our group of Autism Speaks volunteers had been in our state capitol for months working diligently with members of various House and Senate committees on a matter near and dear to our hearts – autism insurance reform, because we believed Kentucky’s children with autism deserved better.
After months spent in the capitol’s hallowed halls talking to legislators, testifying at hearings, and countering the insurance industry’s iron grip on insurance policy in the Commonwealth of Kentucky, we emerged on March 16 with a unanimous vote on the House floor in favor of our bill, House Bill 159. That victory was sweetened when, 16 days later, the Senate also voted unanimously to pass HB 159!
Until this experience, I held an image of all special interest lobbyists and politicians in an unfavorable light, as many of us do. I am a veteran reader of John Grisham novels about big tobacco, the pharmaceutical industry, and, of course, the insurance company lobbyists who, in these novels, try to manipulate politicians. These were the horrible images that immediately came to my mind. However, after many months of working closely with a special interest lobbyist, I became very aware that they are not all bad men, out to dupe the public or our politicians into passing unfavorable laws. In our case, this image could not have been more wrong. Our lobbyist, Bart Baldwin, spent countless hours with us, guiding us through the delicate, chess-like maneuvers of professional politics. He laughed off our rookie mistakes and, in the same way we teach our children, he modeled appropriate behavior and language for us to use in our conversations about autism insurance reform with members of the state legislature. Bart is a true defender of the rights of our children with autism, as are so many other lobbyists just like him, who work for the passage of good public policy and the betterment of all society.
We were also fortunate to have had two excellent champions for our cause in the House – Representative Jeff Greer and Representative Scott Brinkman. While neither of these men has had to experience the financial drain that a full-time applied behavior analysis (ABA) therapy program puts on a family’s finances, Representative Brinkman is the father of a grown son with autism and did engage in other costly treatments. Both Representatives had compassion for our issue and moved forward with fervor on behalf of our “insurance is the answer” solution.
Thank you, Bart Baldwin, Representative Greer and Representative Brinkman! And take that, John Grisham!
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.
In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our second item, Autism “Costs” Society, is from Autism Speaks’ Top 10 Autism Research Events of 2007.
Researchers in 2007 made several strides in forcing the community-at-large to face the magnitude of managing the disorder. The Centers for Disease Control and Prevention (CDC) released the first nationwide prevalence survey and the first state-wide epidemiological record- based surveys using standardized approaches, making the whole country shockingly aware that 1:150 children in America has an autism diagnosis. These studies confirmed that autism can no longer be thought of as a disorder that touches only a few people.
The suffering this causes is not easy to comprehend nor to quantify. Nonetheless, a Harvard economist managed to calculate that each year autism costs society a staggering $35 billion, and that it costs more than $3 million to care for an individual with autism over their lifetime due to their special needs. Surprisingly, adult care, not child care or early intervention and treatment, accounts for most of the costs.
As families continue to struggle to gain insurance coverage, documentation of the severity of this financial burden across the lifespan will go a long way to making our voices heard, informing policy-makers, and assisting families in planning for their future. Because of data such as this, insurance reform bills are now under way or under development in 14 states.
Update since this story was first run: Through Autism Speaks’ efforts, fifteen states – Arizona, Colorado, Connecticut, Florida, Illinois, Indiana, Louisiana, Montana, Nevada, New Jersey, New Mexico, Pennsylvania, South Carolina, Texas, and Wisconsin – have enacted autism insurance reform laws. Several other state legislatures are considering measures in 2010 to end the discrimination people with autism and their families have long endured. Visit AutismVotes.org to find out about action being taken in your state.