Behavior Analysts and Policy Advocacy

The Politics of Autism includes a discussion of major interest groups.

Evanko, C.D., Moss-Lourenco, T., Kramer, R. et al. Why We All Need to Shape the Profession of Behavior Analysis through Advocacy and How to Get Started. Behav Analysis Practice (2024). https://doi.org/10.1007/s40617-023-00895-w

Abstract

Many behavior analysts, like professionals in other health-related fields, are not trained to promote themselves, affect public policy, or disseminate information to individuals outside of their field, including to lawmakers. One of the reasons professionals can be experts in their own professions is because they devote their time to advancing their knowledge in their field; thus, they have limited time to spend becoming proficient in public relations, advocacy, and public policy. However, it is precisely these skills that behavior analysts need to hone and utilize effectively if the profession is to be sustainable. This article gives a brief history of the professionalization of behavior analysis, discusses the pitfalls of sometimes only being recognized as a single-disability industry (i.e. autism), explores the behavior of other professions that serve as models for advocacy, and provides recommendations for advocacy at different levels. The intent is to guide the profession and professionals of applied behavior analysis to a sustainable future based on the experiences of leaders of three U.S. state organizations.

Conclusion:

 The salient point of this article is that every behavior analyst has an obligation to positively affect the profession through advocacy and dissemination. And all behavior analysts have an opportunity to do so with the effect being dependent upon their experiences and positions in the field. This task may seem daunting, although maybe less so if one is presented with some ideas to get started as we have endeavored to do. Through this article, the authors hope that leaders of national and state organizations, as well as individual practicing behavior analysts, will find inspiration and perform at least one of the advocacy activities listed herein.

Individuals can start by joining their national and state organizations. The membership process is generally easy to find and follow. If all behavior analysts were a member of at least one organization, the influx of cash to those groups would help leaders to address the issues that are most important to the field. With the extra funding, national and state organizations could focus on branding and public relations as well as advocacy using professionals who focus on those skills. Those professionals can create job aids or checklists, similar to what the World Health Organization created to help doctors better explain about vaccines (World Health Organization, 2017) for individual behavior analysts to use to advocate in their area, thus creating an army of advocates.

Working together is the only way to achieve better dissemination of our field to others, and a more robust understanding of what it is that behavior analysts actually do and how behavior analysts can be beneficial to society. Expecting others to do this work at best may lead to missing important aspects, and at worst may lead to the diminution of our field. It’s time for you to get involved!

COVID-19 and People with Intellectual and Developmental Disabilities

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. Providing education and social services is proving to be very difficult. 

John N. Constantino et al., John N. Constantino. "The Impact of COVID-19 on Individuals With Intellectual and Developmental Disabilities: Clinical and Scientific Priorities" (letter), American Journal of Psychiatry, August 28, 2020.

We begin with the assertion that among noninfected persons in the United States, few are more adversely affected by COVID-19 than individuals with intellectual and developmental disabilities, given that a vast proportion require in-person care or critical therapeutic support within their living environments, with little backup or systematic coverage for prolonged interruption of services.

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For many, physical proximity to caregivers and loved ones is required to bridge gaps in intellectual and communication abilities and to make day-to-day life fulfilling, predictable, and manageable. People with intellectual and developmental disabilities were disproportionately isolated prior to the pandemic, and intensification of that isolation stands only to weaken the community for all citizens. 

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As summer school and summer camp programs were suspended, and as classrooms are being converted to virtual learning environments for the fall of 2020, the discrepancy in delivery of a free and appropriate public education (Individuals with Disabilities Education Act, Parts A–D) is pronounced between what is available to typically developing children compared with those requiring special education.

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 For all of these domains, as well as the longer-term biological, psychological, and social consequences of COVID-19 infection among individuals with intellectual and developmental disabilities, there are minimal scientific data on the degree of disproportionality of impact as a function of type of disability and socioeconomic disadvantage.

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Finally, there is the Herculean task stakeholders and advocates have to ensure that public decision making and the massive mobilization of relief funds by federal, state, and local governments are equitably responsive to the needs and interests of individuals with intellectual and developmental disabilities, who require representation in all decisions that affect the population in a public health emergency of this scale. Preserving equitable attention to the voices of individuals with intellectual and developmental disabilities, in addition to the already daunting enterprise of effective self-advocacy in the heat of a national crisis, creates inordinate challenges for people with limitations in communicative capacity to be heard effectively. In this context, advocacy therefore takes on unprecedented significance, given the consequences of oversight during such rapid mobilization of funds. Between March 6 and April 24, 2020, four COVID-19 emergency supplemental funding packages became law, and each has implications for individuals with intellectual and developmental disabilities (see Table S3 in the online supplement).

Citizens as Autism Policy Entrepreneurs

The Politics of Autism includes an extensive discussion of parental activism on issues such as insurance.

Timothy Callaghan and Steven Sylvester have an article at Policy Studies Journal titled "Private Citizens as Policy Entrepreneurs: Evidence from Autism Mandates and Parental Political Mobilization."  The abstract:

Growing bodies of research in the social sciences point to politicians, bureaucratic officials, interest groups, and other actors who serve as policy entrepreneurs. In this paper, we argue that private citizens can also serve a primary role as policy entrepreneurs. To analyze this phenomenon, we investigate the behavior of private citizens and their role in changing state policies surrounding insurance mandates for autism coverage. Using a thematic analysis of focus groups and interviews conducted with individuals active in the push for autism policy change, we demonstrate that private citizens meet all of the requirements identified for policy entrepreneurs in the existing literature. We then investigate when, why, and how these private citizens step forward into the policy process as entrepreneurs. We show that entrepreneurship occurs when private citizens have needed resources, a sense of duty to fix a policy status quo they see as unjust, and a stake in policy change. We conclude by discussing the importance of our findings to the study of public policy and their generalizability beyond autism policy.

From the article:

Although these resources were critical to the engagement of our policy entrepreneurs, our participants also suggested that they were driven into the policy process by a sense of duty to fix a status quo they saw as unjust. There was a universal sentiment among our entrepreneurs that families should not have to foot the bill for needed autism treatments and that the policy status quo was “fundamentally wrong” and that policy change “needs to happen right now.” Our entrepreneurs regularly pointed to a sense of duty given their advantaged socioeconomic status. They “recognized the injustice of what was happening and the injustice of the fact that [we] were very blessed that we had the financial resources and the education to … fight for it.” Another entrepreneur expressed similar sentiments when she said:

It's so wrong. And like the fact that we have two advanced degrees, could mortgage our house, and you know, get treatment for our kid. And then this whole part of the population couldn't. I mean, certainly when we started, I don't think we were thinking, like, “Oh, let's go get everything.” But it just … you have to. Cause … it's so … so wrong.

Some suggested that they “began to be plagued by the thought of, okay, what does your average family do” when confronted with this issue, a question that led to anger and entrepreneurship for many. This sentiment was particularly well conveyed by one mother:

I knew the laws, I knew how to get it done. And then my neighbor couldn't. My sister couldn't. And I was pissed. So it was a combination of, you know, the injustice, anger over the injustice of it, and capacity, because … I have advanced degrees, I had the coverage, I had the experienced, my kid was covered, now let's fix it for other people.

Insurance Lobbyists Block Reform in South Carolina

The Politics of Autism includes an extensive discussion of insurance.

Emily Wright at The State (SC):

In South Carolina, Ryan’s Law requires that large group health insurance plans and the State Health Plan cover autism therapy, but with many restrictions. It was enacted 12 years ago, and we now know that those restrictions are inappropriate. The data proves the therapy’s efficacy, and the costs are reasonable when distributed across policyholders. This law is working — for those fortunate to be covered by it.

My daughter has an individual health insurance plan, but this therapy is excluded in that kind of plan.

Why? I pay premiums too. Why doesn’t she have access to the same coverage?
I am also a small business owner. I could purchase small group health insurance, but S.C.’s law also allows the therapy to be excluded in those plans.

Autism advocates are in their fifth year of attempting to expand Ryan’s Law to include the individual and small group markets. Bill S.135 passed the Senate in 2015 but was blocked in a House committee. Bill H.3790 passed the House in 2017 but was blocked in a Senate committee. Now bill S.363 has been filed by Sen. Tom Davis. All three bills have essentially the same language.

Why has the same language passed both the House and Senate but still not become law? The powerful, big money insurance industry stopped it.

An alternate proposal was introduced by the insurance industry last year. The entire autism community opposes the proposal, but it managed to be fast-tracked through the Senate Banking and Insurance Committee. Fortunately, autism advocates stopped the bill on the Senate floor. But the same bill has been pre-filed this session (S.74).

House Votes Today on Bill to Weaken ADA

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.

David M. Perry at Pacific Standard:

On Thursday, February 15th, the Republican caucus and at least some Democrats in the House of Representatives are likely to vote to make the Americans With Disabilities Act (ADA) functionally optional when it comes to businesses. Propelled by years of lobbying by a group that represents shopping malls, the House will approve a new law that removes businesses' incentive to comply with the ADA. Disability activists unanimously argue that the bill will reverse nearly 30 years of progress, but the lobbying efforts of the International Council of Shopping Centers keep pushing it forward.

H.R. 620, the "ADA Education and Reform Act of 2017," restructures the enforcement mechanism for the ADA. The means of enforcement have always been unusual. Most regulations that affect commerce are enforced by local, state, and federal agencies. While there is a small division in the Department of Justice (DOJ) doing some oversight, the ADA generally depends on private citizens bringing complaints through damages-free lawsuits (though with legal fees attached) in order to command technical compliance in commercial spaces. Think about how this differs from most other regulatory situations. You aren't required to check whether the local restaurant complies with health codes, labor standards, or other safety features; the government does that for you. When it comes to disability, though, most enforcement starts with a personal lawsuit.

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H.R. 620 works on two fronts. First, it demands that the federal government offer businesses more education about the ADA, while not providing additional funding to implement that education. In fact, the DOJ already provides such education. As we've covered at Pacific Standard, the Department of Justice has been rolling back guidance documents that clarify how the ADA works, so the best guess about H.R. 620's education statute is that it's a way to cut enforcement activity by making the DOJ spend more money on education.

The second front—notification—is more pernicious. Right now, businesses that are found to be non-compliant can be held immediately accountable. That seems fair, given that the ADA has been law for 28 years. Under the new bill, a person who encounters an accessibility obstacle would need to give a written, technical notification to the business (which often will require a lawyer to do correctly), wait 60 days for that notification to be acknowledged, and then wait 120 more days for "substantial progress" to be made in resolving the accessibility issue. If, after 180 days, there hasn't been substantial progress (it's not clear quite how that standard would be regulated), the disabled person who first encountered the accessibility obstacle can then sue. They still won't be able to collect damages.

Organizing for the Alabama Mandate

The Politics of Autism includes an extensive discussion of insurance and the regulation of autism service providers.

At The Montgomery Advertiser, Brian Lyman has an oral history of the passage of Alabama mandate legislation.  This section deals with organizing:

Catey Hall, parent and advocate: A small group of parents and the Autism Society had done this for six years. What they did not have was a strong presence of advocates and parents self-advocating, asking legislators to support them. We decided we’re going to do that this year.

Lisa Whitson Riley, parent and advocate (son George was diagnosed with autism at age 4): The Autism Society sent out newsletters. I set up a Facebook page the first go-around that we all then started tapping into and using. We would use the Facebook page. We needed people who weren’t on the Facebook page. I posted everything. I did Facebook, Twitter and LinkedIn. And there was another parent who did Instagram and Snapchat. We flooded social media.

Hall: We would say ‘We need people here.’ And people came. It was hard for those families. The ones who couldn’t secure child care, they would bring their children with autism there.

Sen. Cam Ward, R-Alabaster: Catey was in the balcony videotaping the debates and streaming it live on Facebook. We didn’t have it on Facebook in 2012.

Bama Hager, policy and program director, Autism Society of Alabama: The grassroots support for the Alabama Autism Insurance Law was so tremendous that lawmakers soon became interested in learning more about the absence of insurance coverage for children who have autism. Parents, self-advocates living with autism, grandparents, aunts, uncles, teachers, neighbors and friends were advocating ferociously for this bill for their loved ones.

Derek Trotter, lobbyist: There were generally a couple of advocates in the State House on session days. We made sure they touched their members and their senator that represents them and whoever they could get in front of.

Riley: I had coffee parties. What I did was I posted on Facebook, ‘Hey, come meet me at the coffee house.’ We would pass out the list and call senators and members of the House and ask them to support this bill. We personalized it. Not just calling and saying ‘Support this because I want you to,’ but ‘I know someone.’

ABA Provider Advocacy Group

The Politics of Autism includes a discussion of major interest groups such as Autism Speaks.

Lauren Rabin writes at The Huffington Post:

ABA is the only empirically validated method to address behaviors and deficits commonly associated with an autism diagnosis. However, it’s intensive and thus expensive which makes insurance coverage of the service extremely important. (A third important feature of ACA was the expansion of Medicaid funding, but we can leave that for another day).

While concern is understandable, there are organizations that are fighting to protect access to these services, including Autism Society of America and Autism Speaks. Another such organization is the National Coalition for Access to Autism Services (NCASS). NCASS is one of the only groups focused specifically on protecting access to autism services.

NCAAS was founded by prominent leaders in the autism community - consisting of organizations like Autism Business Association, Autism Spectrum Therapies, Center for Autism and Related Disorders and Butterfly Effects. These leaders realize that providers of autism services need a voice in order to protect access to quality autism services for all families in need. While NCAAS membership is primarily comprised of providers, its mission is to ensure access to the services needed by the autism community.

It was important for these leaders to join forces rather than advocate in Washington on their own.

“This is an extremely fragmented market made up of many small providers which makes it hard for our voices to be heard on a national level. Many of the leaders in the industry felt it was important to join together and protect the community we serve by ensuring access to evidence-based treatment,” said Justin Funches, a vice president at Autism Spectrum Therapies. Justin explained that together, there is a better chance we will be able to protect these critical services.
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To learn more about NCAAS visit their website or to learn about one of their top leaders,Autism Spectrum Therapies, click here.

Another provider group is the Coalition of Autism Service Providers (CASP). 

The Business Council of Alabama Has Some Explaining To Do

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Mary Sell reports at The Times Record:

A group of lawmakers who fought for expanded insurance coverage for children with autism said they weren’t invited to the Business Council of Alabama’s summer conference at Point Clear next month.

The BCA was an opponent of the autism coverage legislation that was approved overwhelmingly by lawmakers, calling it an Obama-style mandate on employers that would increase premiums.

Rep. Jim Patterson, R-Meridianville, sponsored the bill in the House. He said this is the first time he hasn’t been invited to the BCA’s summer conference since he was elected in 2010.

“It looks like I’m in pretty good company,” Patterson said today. He also said he’s always had a good relationship with the BCA.

“I have a very good voting record when it comes to business,” he said. But on the autism issue, he said he listened to people in his area.

“I’m more concerned about pleasing my district than I am any group in Montgomery,” he said.

Brian Lyman reports at The Montgomery Advertiser:

Two senators said Thursday the Business Council of Alabama froze them out of an annual governmental affairs conference because of their support for legislation mandating coverage of autism therapies.

The House sponsor of the legislation and another senator who supported it said they also weren't invited, though they were not entirely certain why.

Sens. Dick Brewbaker, R-Pike Road and Cam Ward, R-Alabaster, who pushed hard for the legislation last spring, said in separate interviews they believed their support meant invitations to an annual summer conference hosted by BCA in Point Clear were withheld this year.

“I was viewed as the face of that bill,” Ward said. “That created some ill feelings with them and leadership.”

Nancy Hewston, a spokeswoman for BCA, strongly denied Thursday that the autism bill -- which BCA opposed -- was the reason they were not on the guest list, though a statement from Hewston did not give another reason.

Kyle Whitmire writes at the Alabama Media Group:

"They're mad at me because of the autism bill," Brewbaker said.

Brewbaker was a little more candid than others I spoke with. He's not running for reelection next year. He called the BCA a "punitive organization." While he supports 90 percent or more of what the BCA proposes, that apparently wasn't enough for them.

"That's the way politics is," he said. "It's a contact sport, and you have to have a thick skin. It's their conference and they can invite whoever they want. There are no hard feelings here."

Among a subset of anti-crony capitalism Republicans, BCA has been making enemies. State Rep. Ed Henry is among them. Like Brewbaker, he too, has said he won't seek reeelection and now he's not holding anything back.

"There's quite a few of us who tanked all their bull crap this year and now they're mad at us," he said.

Henry's no AEA Democrat or liberal snowflake. He supported Donald Trump before Trump was cool (at least among Republicans). He says his experience in the Legislature has been eye-opening.

"If corporate welfare is not as bad as regular welfare, it's right there on the cusp," Henry said. "We don't even know who is getting any of this stuff half the time when we vote on it."

Hill Days

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities, as well as other government programs at the federal and state levels.

Christina Samuels reports at Education Week:

Special educators are fanning out across Capitol Hill Tuesday, spreading a few targeted messages for Washington lawmakers: Congress should pass a budget that allocates more money to special education and gifted education, oppose efforts to divert public money to private school vouchers, and fight any bill that would cut Medicaid coverage for children's health services.

So-called "Hill days" are a tradition for advocacy groups of all types. But members the Council of Exceptional Children and the Council of Administrators of Special Education, who have joined together this year for a "special education legislative summit," report feeling particular pressure to get their points across.

"I am feeling a huge sense of urgency," said Tara Rinehart, the director of special services for the Wayne Township in Indianapolis, a 16,200-student urban district. She met with her superintendent before making the trip to hammer out talking points to share with Indiana's congressional delegation—one of which was to preserve Medicaid.

The district, like many others, uses Medicaid funds to provide services to children with disabilities who are eligible for the program. But the program has a broader reach for her student body, she said: About 55 percent of the children in the district rely on the program.

Paul Zinni, the superintendent of the 700-student Avon, Mass., district, said one of his goals is a perennial one for special educators—getting a larger federal investment in special education. And he's also worried about school choice provisions that might leave a difficult-to-fill hole in his budget.

Alabama Lobbyist v. Autistic Kids

The Politics of Autism includes an extensive discussion of insurance.

At The Alabama Media Group, John Archibald writes about an Alabama hearing on an insurance mandate:

Billy Canary, head of the Business Council of Alabama - who somehow serves as both the mouthpiece and rump roast of the Big Mules - quoted scripture about children as he railed against the bill to help children.

"Children are a gift from God," the verse goes.

It's like Darth Vader himself giving a lecture about the dangers of the Dark Side.

But the lesson - the primer on process and priorities - came when debate tumbled into a hall and Patterson and Canary exchanged words with uncharacteristic honesty.

AL.com's Trisha Powell Crain was there to take it down. Thank goodness.

Canary began with what can only be described as the lobbyist equivalent of "do you know who I am."

Why, he asked, did Patterson dare file the bill without coming to him first?

Holy cow. Why not just make Patterson and every other legislator kiss his ring? We know Canary's a big dog. He -a lobbyist with a paid point of view -- used to have weekly meetings with House Speaker Mike Hubbard to set the Statehouse agenda. That was before Hubbard was convicted of corruption - including charges of soliciting things of value from people connected to the BCA.

But Patterson - bless his heart -- called Canary's BS. Lobbyists typically come to the people who are elected to office, and not the other way around, he said.

That's how it's supposed to work, anyway.

Patterson has no personal reason to help autistic children. It's not a family matter and he's not a bleeding heart. He's sure not a guy out to get the insurance companies. He was asked to sponsor the bill and he never thought he'd do it.

Alabama Mandate Legislation

The Politics of Autism includes an extensive discussion of insurance.  At the Alabama Media Group, Trisha Powell Crain reports on Alabama mandate legislation.

A bill to require insurance coverage for therapy for children with autism faces an uncertain future after the House Insurance committee chair, Rep. Kerry Rich, R-Albertville, this week called for compromise.

But the problem is the two sides couldn't be farther apart. And Rich made no promises that he will bring the bill up for a vote.

HB284, sponsored by Rep. Jim Patterson, R-Meridianville, calls for health insurance coverage for applied behavioral analysis, a type of behavioral therapy that is a primary treatment for children with autism.

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A competing version of the bill, SB57, calls for coverage of the therapy only for children from birth through nine years old and places the administration of the program under the Department of Mental Health. That version would also pulls $3 million from the state's education budget to provide no more than $40,000 of services per child in a given year.

Opponents of SB57 argued the financial burden doesn't belong in the education trust fund, nor should it be administered under a government agency.

According to Autism Speaks, 45 states cover behavioral therapy for people with autism. It is the primary therapy for children with autism and is as essential to treating autism as insulin is to treating people with diabetes.

Ashlie Walker, a board-certified behavior analyst, employs 24 certified behavioral analysts who work in Alabama, and calls the battle against HB284 "a war on kids with special needs."

Michael Wasmer with Autism Speaks said the cost to provide coverage was around 50 cents per member of the involved insurance pool. But Blue Cross and Blue Shield of Alabama lobbyist Robin Stone spoke in total costs of millions of dollars.

Wasmer said Stone's projections were faulty because they were based on the assumption of maximum usage of behavioral therapy, because not all children with autism need behavioral therapy, and those that do would not require maximum usage.

Even children with autism who need maximum therapy only need that level of usage for three to five years, Wasmer said.

Once a child with autism starts school, if a determination is made that behavioral therapy is necessary, schools shoulder the cost. Ultimately, that means taxpayers are paying for needed therapy that supporters of HB284 believe should be covered by insurance.

Antivax People AWOL in CA Disability Battles

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.

Matt Carey writes at LeftBrain/RightBrain:

This past year we have been fighting a big battle here in California. We were fighting to restore some of the services funding we’ve lost over the preceding years. We were trying to get a 10% increase in services funding, which wouldn’t make up for what we’ve lost over the years, but would be a big step forward.

This was a long fight, and one that we didn’t initially win. Even though we fought hard from the start, the budget did not include any increase for disability services. We could have used some help, more voices from the advocacy community. Even though we lost at first, advocates kept trying and finally got a 7.5% increase. And that’s a victory. The Arc of California/United Cerebral Palsy were working hard organizing the effort, organizing call in campaigns, fax campaigns and in-person activism in the state capital. Other groups, such as the Autistic Self Advocacy Network were also helping, as were others.

But here’s the thing: you wouldn’t know any of that if you were only following the vaccines-cause-autism focused groups and people.
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Yes, instead of doing anything, anything at all, to work towards restoring lost services funding, they were lobbying against a vaccine bill. Not “lobbying against a vaccine bill and working for a restoration of services.” Just lobbying against a vaccine bill.

Carey goes on to name names.

A number of posts on this blog have discussed the antivax effort in California.

#CripTheVote

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  As I explain in the book, Hillary Clinton has a long history with the issue, and has issued an autism policy statement for the 2016 campaign.  Trump infamously mocked a journalist with a disability.

A release from Hiram College:

There's a buzz penetrating the political scene this election year and it's coming from the world's largest minority group: people with disabilities.

Enter #CripTheVote, a Twitter/social media conversation that encourages voters and political candidates to exchange concerns and views on disability rights.

When people with disabilities consider themselves part of a group, they take action, such as through #CripTheVote, according to Michelle Nario-Redmond, Ph.D., professor of psychology at Hiram College. Nario-Redmond's "Disability Group Identification and Disability-Rights Advocacy: Contingencies Among Emerging and Other Adults" (Emerging Adulthood: 2016) reveals this phenomenon.

In her study of 204 emerging adults with disabilities, Nario-Redmond found those who identify themselves as members of the disability community are more involved in political activism and civil rights advocacy and are also more in tune with discrimination than their counterparts who identify less as group members.

"They see the unfairness in the world and recognize discrimination as a problem of those who impose it, not those inflicted by it," says Nario-Redmond, who explains that group membership opens communication channels. It gives people a chance to hear others' opinions and in turn, perhaps, validates their own.

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Nario-Redmond points out that people with disabilities who come together as group members are likely to vote in elections. Her daughter, a registered voter since she was 18, encourages this year's presidential candidates to look at history and, in particular, at last year's 25th anniversary of the American with Disabilities Act.

More information: M. R. Nario-Redmond et al. Disability Group Identification and Disability-Rights Advocacy: Contingencies Among Emerging and Other Adults, Emerging Adulthood (2015). DOI: 10.1177/2167696815579830

Dan Burton, Lobbyist

Legistorm reports:

Former Rep. Dan Burton (R-Ind.) is now officially a lobbyist, having filed to lobby on behalf of a group founded by the Church of Scientology.

Burton, through his firm Dan Burton International LLC, registered as a lobbyist for the Citizens Commission on Human Rights, an organization established by the Church of Scientology in 1969 that advocates against psychiatry and psychiatric medicine. Burton's filing indicates he is representing CCHR's position on issues related to "psychiatric treatments including drugs and brain devices" in the 21st Century Cures Act, which has passed the House and as of yet has no counterpart in the Senate.

This lobbying role is not Burton's first encounter with Scientology. While not a member of the Church, Burton attended the opening of the Church's national office in 2012 and commended the CCHR for its work and the opening of their National Public Affairs Office in Washington, D.C. a few months prior.

Burton and Church officials are also allied in their skepticism of the Food and Drug Administration. Scientology has been in an ongoing battle with the agency for decades. Meanwhile, Burton has criticized the agency on a number of fronts, such as his belief that an FDA-approved vaccine caused autism in his grandson. The FDA and other government agencies reject the theory.

A former committee staffer of Burton's, Beth Clay, who has fought with the FDA on alternative medicines and other matters, has served as a board member on the CCHR.
Burton began service in the U.S. House of Representatives in 1982. He was perhaps best known for his investigations into President Clinton's fundraising practices and the death of White House counsel Vince Foster. He retired in 2013 citing family health issues.

From a March 11, 2007 post at Left Brain/Right Brain:

We now have several DAN! doctors who are scientologists, several thiomersal/autism lawyers who are scientologists, a ‘cured’ child who was diagnosed (partly), treated and ‘cured’ by scientologists and now one Congressman who’s [sic] advisor is a scientologist. We also have one indirect link from scientology to Generation Rescue (in the shape of Julia Berle, founding parent of that organisation and mother to the ‘cured’ child described above) and one direct link from scientology to SafeMinds in the shape of Beth Clay.

Ohio, Autism, and Mental Health Parity

At The Columbus Dispatch, Jim Siegel reports on Ohio legislation that would amend the Mental Health Parity Act to include insurance coverage for Autism Spectrum Disorders.

The Ohio Chamber of Commerce and the National Federation of Independent Business/Ohio will make Senate Bill 276 a key vote that they use to score lawmakers if amendments are added dealing with health insurance mandates for brain injuries and autism. Making it a key vote means that lawmakers who vote for the bill will get a negative score from the groups.
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The autism bill would be more costly than the brain injury mandate, [CoC spokesman Keith] Lake said, but the brain injury bill “essentially is being done to the benefit of one company.”

That company is Mentis Neuro Rehabilitation of Houston, Texas, which has testified in support of the bill and runs a facility in Stow, Ohio. The company is represented by Robert Klaffky and Doug Preisse, a pair of influential lobbyists, particularly among House Republican leadership.

Klaffky and Preisse also represent Autism Speaks, a national autism advocacy organization.

The amendments have been drafted and could be offered in the House Health Committee on Wednesday. Committee Chairman Rep. Lynn Wachtmann, R-Napoleon, said he opposes the amendments and was not sure what was going to happen with them.

The request to amend the bill appears to be coming from House leadership. Smith, the prime sponsor of the brain injury bill, said he did not advocate for the amendment. In fact, when asked if the bill is ready for passage, he said, “not at this point, in my opinion.”

New York Legislature Fixes Cuomo Administrative Rule

In New York, WNBC-TV reports:

View more videos at: http://nbcnewyork.com.

After NBC 4 New York's I-Team report in March revealing that health insurers were denying coverage to autistic children, New York lawmakers have approved a reform that would force insurance companies to pay up.

The bill, passed by both the New York state Senate and Assembly, demands insurers cover a key autism therapy called Applied Behavior Analysis, or ABA.

Back in March, the I-Team revealed an administrative loophole that rendered Gov. Andrew Cuomo’s landmark autism insurance law much less generous than many parents expected. The rule allowed insurance firms to deny reimbursements if an ABA provider doesn’t hold a state license.

The problem is, New York state doesn’t offer a license specifically for behavior analysts.
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After the I-Team report revealed the imbalance, State Sen. Charles J. Fuschillo, Jr. (R-Merrick) proposed a law that would establish a new license, specifically for behavior analysts. With such a license in place, insurance companies would have no grounds to deny coverage for autistic kids.

After his reform bill passed on Monday, Fuschillo issued a statement denouncing the last minute administrative rule which limited the original legislation’s impact.

“New York’s autism insurance reform law was authored to prevent families from having to spend tens of thousands of dollars out of pocket on treatments and therapies for their loved ones with autism," Fuschillo said. "Unfortunately, regulations were implemented contrary to the law’s intent which prevent many families from receiving these benefits."

Georgia Update

In Atlanta, WXIA reports:

The opposition to the autism bill was finally out in the open during a meeting of the newly created state Commission on Mandates.

"It's nice to see who they are and what you're up against," said Anna Bullard, the Toombs County mother who spent much of the winter lobbying on behalf of a bill that would require insurance coverage in Georgia for autism treatment. "Because the whole time we were at the capitol, we never saw anybody. Or heard anything. But we knew they were there."

The bill was named for Bullard's daughter Ava, an eight year old with autism. She has thrived under the type of treatment often denied to those lacking such insurance coverage.

"And they all have compelling stories," said Kyle Jackson, lobbyist for the National Federation of Independent Businesses-- which opposes the bill. Like Bullard, Jackson spoke before the mandate commission Tuesday.

Two additional points:

• Jackson's prepared statement did not mention the word autism.
•  Senator Renee Unterman, a member of the commission, is an insurance company executive.

More on the New York Rule

The Age of Autism has an action alert on a New York rule that would effectively gut the state's insurance mandate:

Just weeks before the New York autism insurance reform bill went into effect on January 1 the Cuomo administration issued an erroneous interpretation of the law that guts the only real step forward for families dealing with autism.

Governor Cuomo’s Department of Finance has issued an “emergency” rule finding that will not recognize the credentials of Board Certified Behavior Analysts (BCBA) for insurance billing purposes, so unless your behavior analyst also has a New York license as a physician, psychologist or other licensed professional they will not be allowed to bill insurance companies. This interpretation reflects neither the letter nor intent of the law Governor Cuomo signed with much media attention and fanfare at the end of 2011.

Thousands of students in New York schools receive ABA as required in their IEPs provided by BCBAs, and those BCBAs are paid with tax dollars. Yet when it comes to insurance company dollars all of a sudden BCBAs aren’t properly credentialed. This is rank toadying to the insurance companies.

New Yorks, and New Yorkers only please, click on the T alert to send an email to the Governor and ask him to stop delaying therapy for some of New York’s most vulnerable students.

And please call the Governors office and politely ask the staffer to tell the Governor to do the right thing and provide ABA for New York’s students with autism.

Please share this email with friends and family and please post to Facebook and other social networks.

Governor Cuomo will probably run for president. He will have a hard time if the disability community sees him as an opponent.

Mandate Problems

Putting a mandate in place is a beginning, not a conclusion.  Problems crop up, as several examples illustrate.

In New York, The Syracuse Post-Standard provides an update on rulemaking by the state’s Department of Financial Services.

The issue comes down to differences between a law and the regulations to implement it, and the differences between certification and licensing.

The law signed by Gov. Andrew Cuomo in 2011 requires insurers to pay up to $45,000 a year for autism services that include a form of extended therapy called applied behavior analysis. That therapy breaks complex skills into small steps to improve skills and address concerns related to eating, feeding sleeping, toileting and challenging behaviors.

New York's law said that the therapy must be provided by or at least supervised by a certified behavior analyst. New York has roughly 750 board certified behavior analysts. The regulation requiring licensing cuts the pool of eligible supervisors to 43. [emphasis added]

The state Department of Financial Services, which oversees the insurance and banking industries, has not yet responded to a request for comment.

During the 2011-12 election cycle, the insurance  industry made $404,150 in campaign contributions to Cuomo, who appointed the head of the department. Judith Ursitti, Director of State Government Affairs for Autism Speaks, says that industry lobbying may have swayed the regulatory decision.

“The reason I say that is because we’ve passed autism insurance laws in other states, and once we pass the law and begin working on implementation , this particular roadblock seems to be popping up. We’ve had similar situations in Rhode Island and Virginia where we have worked through the process and resolved it.”

Autism service providers are encouraging families of children with autism to write the Department of Financial Services’ Superintendent, Ben Lawsky, to encourage him to “implement the law as it was intended” [emphasis added]

 In Michigan, MLive reports:

Michigan’s new program allowing health insurance companies to be reimbursed for paid claims related to autism coverage is off to a slow start.

The reimbursement provision for carriers and third-party administrators was part of a compromise that helped the autism coverage plan win approval in the Michigan Legislature and be signed into law last year. The law mandates that insurance companies provide coverage for autism treatment and diagnosis. The reimbursement is designed to help companies offset those costs.

The state’s autism coverage fund is allocated $15 million for the current fiscal year that began in October -- but only two claims had been submitted and paid out to insurance companies as of this week, according to the state’s Department of Licensing and Regulatory Affairs. The total claims paid were a little more than $3,000 combined.

In Ohio, The Toledo Blade reports on a contention that actions by Governor John Kasich may violate the state constitution.

The Ohio Health Care Freedom Amendment was overwhelmingly supported by voters in 2011 and was largely seen at the time as a message to the federal government opposing President Obama’s health-care law. But the amendment also prohibits Ohio from mandating specific types of coverage, according to Maurice Thompson, executive director of the 1851 Center for Constitutional Law.

The last legislative session ended last month without final passage of a bill that had bipartisan support to require health policies issued in the state to include coverage for autism, a broad category of disorders affecting child brain development. The disorders can affect communication, attention, and behavior, among other things.

When the bill did not pass, in part because of opposition from business, Mr. Kasich ordered such coverage to be included in state policies for 39,000 government employees. He also sent the Obama Administration a written “comment” on proposed federal rules for implementation of the new Patient Protection and Affordable Care Act in Ohio that his office said have the effect of including autism spectrum disorder as part of the minimum coverage private insurers would have to provide under the law.

The governor’s action may not have technically violated the language of Ohio’s 21st right under its constitution’s Bill of Rights, but it violates the spirit of the amendment, Mr. Thompson said.
“We want to litigate that if we can,” Mr. Thompson said. “We’d like to get the autism mandate off the books because it can be highly destructive to the health-care market and small business. It precludes freedom of choice and violates the spirit of the health-care amendment.”

Rachel Kenyon

Rachel Kenyon, the autism mom whose appeal to Rep. John Larson (D-CT) led to the TRICARE amendment, is the American Military Families Autism Support person of the year: