Pushback Against RI License Bill

  A number of ASD people drive cars.

In The Politics of Autism, I write:

[M]any police departments have trained officers and other first responders how to spot signs of autism and respond accordingly.[i] Some organizations have also published identification cards that ASD adults can carry in order to defuse potential conflicts. Virginia provides for an autism designation on driver licenses and other state-issued identification cards. Once again, however, the dilemma of difference comes into play. One autistic Virginian worries: “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” Clinical psychologist Michael Oberschneider is concerned about the understanding level of first responders: “I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous.”[ii]

Antonia Noori Farzan at The Providence Journal:

A proposal to create special driver's licenses and car decals bearing the word "autism" is generating backlash.

Advocates described the legislation introduced by two Westerly Democrats — at the request of an autistic teenager — as well-intentioned but misguided.

The bill, which will probably be revised, aims to ensure that an autistic driver is not perceived as a threat during a police stop. But opponents say that it could lead to harassment and discrimination.

"It is literally labeling us and putting us into a box, rather than uplifting and supporting us," said Camille Shea.

...

People who testified against the bill on Tuesday expressed concerns that drivers with a special driver's license or car decal could face harassment, bullying or discrimination.

"Licenses are shown for many purposes, and this designation would lead to stereotyping and breaches of the individual's confidentiality," wrote Mireille Sayaf, executive director of the Ocean State Center for Independent Living.

...

Adria Marchetti, a self-described "Black autistic person and parent of autistic children," suggested that the creation of a voluntary registry would "only be used as an excuse for police brutality when Black and brown people don't register."

"If this bill takes effect, could lack of disclosure during an incident be used against the autistic person, aka 'you should have opted in?'" wrote Heather Bryant of North Providence.

Hannah Stern of the American Civil Liberties Union of Rhode Island said the group understood the intention behind the legislation, but took issue with the fact that it "puts the burden on an individual with a disability."

Training Videos for First Responders

In The Politics of Autism, I discuss interactions between first responders and autistic people. 

In Rhode Island, the Autism Project (TAP) created short videos to educate police, fire, EMS, and state troopers about interactions with autistic people and their families during stressful or routine encounters.

From the YouTube page:

This project is supported by Grant No. 2020-J1-BX-0013 awarded by the Bureau of Justice Assistance. The Bureau of Justice Assistance is a component of the Department of Justice's Office of Justice Programs, which also includes the Bureau of Justice Statistics, The National Institute of Justice, the Office of Juvenile Justice and Delinquency Prevention, the Office for Victims of Crime, and the SMART Office. Points of view or opinions in this video are those of the participants and do not necessarily represent the official position or policies of the U.S. Department of Justice.

Here is the trailer:

App for Reporting Abuse

In The Politics of Autism, I write:

People with disabilities are victims of violent crime three times as often as people without disabilities. The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. A small-sample study of Americans and Canadians found that adults with autism face a greater risk of sexual victimization than their peers. Autistic respondents were more than twice as likely to say that had been the victim of rape and over three times as likely to report unwanted sexual contact.

A release from the University of Rhode Island:

The incidence of sexual abuse of people with intellectual and developmental disabilities is alarming. A 2018 National Public Radio investigation, citing previously unpublished U.S. Justice Department data, found that people with intellectual disabilities are seven times more likely to be victims of sexual abuse than people without disabilities.

Krishna Venkatasubramanian, an assistant professor of computer science at the University of Rhode Island, is looking for a way to help through technology. Venkatasubramanian has teamed with the Massachusetts Disabled Persons Protection Commission to develop an app-based tool to help people with intellectual and developmental disabilities better report sexual abuse. His work is funded by a three-year, $380,510 contract with the Commonwealth of Massachusetts, part of a grant from the federal Administration for Community Living in the U.S. Health and Human Services Department.

“It’s a terrible problem. Abuse is rampant in the community, and there are a lot of obstacles to reporting abuse,” says Venkatasubramanian. “Our goal is to build a tool that makes reporting easier, but also teaches folks how to recognize abuse and what they should do.”

“Violence against people with disabilities is a frequently unrecognized and under-reported problem that has reached epidemic proportions,” says Nancy A. Alterio, executive director of the Massachusetts commission. “People with intellectual or developmental disabilities face significantly higher rates of abuse than the general population. Forty-nine percent experience 10 or more incidents, and shockingly, only 3 % of sexual abuse cases involving people with IDD will ever be reported.”

The app, which is scheduled to be available in 2021, will provide interactive information to help people with intellectual and developmental disabilities identify abuse, easily file a report, and take the appropriate steps in its aftermath to stay safe. In designing the app, Venkatasubramanian is collaborating with the Massachusetts commission, the Department of Developmental Services, and Massachusetts Advocates Standing Strong, a statewide self-advocacy organization run for and by people with IDD, along with the input of clinicians, caregivers, experts and the future users of the app.

Deb Lloyd, project coordinator with Standing Strong, says there is a great need for the app. People with IDD are at heightened risk of being abused, she says, and many times abusers are people they know, adding difficulties to reporting abuse. At the same time, many in the population lack an understanding of what constitutes abuse.

“This is an amazing project,” Lloyd says. “Learning about abuse will be very helpful. Individuals will be able to access the information repeatedly and have a better understanding of the material. They also will be able to report independently. Fear of caregiver interference will hopefully be eliminated. The current reporting system is in writing or by phone and most cannot report without support or telling someone who will report on their behalf without judgment.”

Venkatasubramanian, whose research focuses on cybersecurity, personal safety and well-being, and accessibility with an aim to explore the frontiers of research in computer science to build usable technologies for marginalized populations, began work on the app in 2018 while teaching at Worcester Polytechnic Institute. When he heard the NPR report, he contacted local advocacy groups in Massachusetts and the commission to see how he could help.

In developing the app, Venkatasubramanian, along with psychologist Jeanine Skorinko, a professor of psychology at Worcester Polytechnic Institute, has been working with advocacy groups and talking with people with IDD to understand how they use technology and learn about their daily lives. He learned most were comfortable with technology and most used tablet-based apps. As the app is developed, prototypes will be tested by its intended users to determine what designs are most effective.

“There are a whole bunch of design guidelines that typically are followed when the audience has IDD,” he says. “You have to make sure you don’t have upsetting colors or you’re not giving negative feedback. Some users also may have other conditions. They may have vision impairment. They may have motor disabilities.”

“Our goal is to co-design with people with IDD, not just make them a recipient of the great things we build,” he adds. “We don’t believe we can build for a population unless they’re involved.”

Tom Howard, a URI graduate student in computer science, is helping to oversee the project, working with fellow graduate students Emiton Alves and Mary Wishart. Howard and Alves have been working on story-board-like prototypes of abuse-awareness information, researching how to make it more engaging for users. “This project resonates really deeply with me,” says Howard, of Smithfield, Rhode Island. “I come from a family that’s done foster care my whole life. So, when I heard about a project that would give me an opportunity to potentially help so many people, it all just fell into place for me.”

Much of the foundational information needed to design the recognition and response functions is already available, including using instruction from a commission workshop tailored to educate people about abuse and how to protect themselves. For the reporting tool, Venkatasubramanian and Skorinko will survey clinicians and caregivers to understand the factors around abuse and how they might affect a victim’s ability to report abuse.

“We have to understand the abuser’s mindset, the victim’s mindset, their lifestyle, the circumstances around the abuse,” he says. “We want to build an app that allows victims to report abuse as safely as possible.”

When completed, the app’s reporting function will assist individuals in reporting abuse to the Massachusetts Disabled Persons Protection Commission through its 24/7 hotline or the internet, Alterio says.

“The hotline number could be preloaded into the app so a user would not need to find the number,” says Alterio. “The app will also work with our soon-to-be new web abuse reporting portal. Individual pre-loaded information, such as name and contact information, could auto-fill the abuse reporting form and make it easier to use the portal. Once the report comes in, the cases will proceed through the commission’s usual screening, referral, and/or investigation processes.”

While the app is being designed to be used through the Massachusetts commission, Venkatasubramanian says its recognition and response functions will be universal and its reporting capability could be adapted for use in other states.

RI Study: Gender Differences, Co-Occurring Conditions

In The Politics of Autism, I discuss gender differences and co-occurring conditions.

A release from Brown University:

A new study analyzing the first 1,000 participants in the Rhode Island Consortium for Autism Research and Treatment (RI-CART) identifies key trends in the presentation and diagnosis of autism spectrum disorder. The study was published in Autism Research on Monday, Jan. 20.

The first finding was that girls with autism receive a diagnosis, on average, nearly 1.5 years later than boys. This is likely because parents and clinicians tend to notice language delays as the first sign of autism, and girls in the study exhibited more advanced language abilities compared to boys, said study authors Stephen Sheinkopf and Dr. Eric Morrow.

Autism is far more common in boys. The RI-CART study found more than four times as many boys as girls with autism; however, given the large size of the sample, the study was well-powered to evaluate girls with autism. The finding that girls with autism are diagnosed later is clinically important, said Morrow, an associate professor of molecular biology, neuroscience and psychiatry at Brown University.

"The major treatment that has some efficacy in autism is early diagnosis and getting the children into intensive services, including behavioral therapy," Morrow said. "So if we're identifying girls later, that may delay their treatments."

...
 The other major finding of the study was that people with autism frequently exhibit co-occurring psychiatric and medical conditions.

Nearly half of the participants reported another neurodevelopmental disorder (i.e., attention-deficit/hyperactivity disorder (ADHD) or intellectual disability), while 44.1 percent reported a psychiatric disorder, 42.7 percent reported a neurological condition (i.e., seizures/epilepsy, migraines, tics), 92.5 percent reported at least one general medical condition and nearly a third reported other behavioral problems.

Settlement on RI Sheltered Workshops

An April 8 release from the Department of Justice:

The Justice Department announced today that it has entered into a statewide settlement agreement that will resolve violations of the Americans with Disabilities Act (ADA) for approximately 3,250 Rhode Islanders with intellectual and developmental disabilities (I/DD). The landmark ten year agreement is the nation’s first statewide settlement to address the rights of people with disabilities to receive state funded employment and daytime services in the broader community, rather than in segregated sheltered workshops and facility-based day programs. Approximately 450,000 people with I/DD across the country spend their days in segregated sheltered workshops or in segregated day programs. The agreement significantly advances the department's work to enforce the Supreme Court's decision in Olmstead v. L.C, which requires persons with I/DD be served in the most integrated setting appropriate .

As a result of the settlement, 2,000 Rhode Islanders with I/DD who are currently being served by segregated programs will have opportunities to work in real jobs at competitive wages. Additionally, over the next ten years, 1,250 students with I/DD will receive services to help transition into the workforce.

“Today’s agreement will make Rhode Island a national leader in the movement to bring people with disabilities out of segregated work settings and into typical jobs in the community at competitive pay,” said Acting Assistant Attorney General Jocelyn Samuels for the Civil Rights Division. “As Rhode Island implements the agreement over the next ten years, it will make a dramatic difference in the lives of people with disabilities, businesses and communities across the state. We congratulate Governor Chafee and state officials for signing this agreement, as we believe that Rhode Island will be a model for the nation with respect to integrated employment for people with disabilities.”

“The filing of today’s consent decree is a critically important event in Rhode Island history,” said U.S. Attorney Peter F. Neronha for the District of Rhode Island. “It ushers in a new day of opportunity – opportunity for Rhode Island residents with intellectual or developmental disabilities to live, work and spend their recreational time alongside their fellow Rhode Islanders. It is an opportunity for this State to move forward; to recognize, finally, that we are better, stronger, when all of us – all of us –are interwoven in the fabric that is Rhode Island.”

Under the agreement, Rhode Island has agreed to provide:

• · Supported employment placements that are individual, typical jobs in the community, that pay at least minimum wage, and that offer employment for the maximum number of hours consistent with the person’s abilities and preferences, amounting to an average of at least 20 hours per week across the target population;
• · Supports for integrated non-work activities for times when people are not at work including mainstream educational, leisure or volunteer activities that use the same community centers, libraries, recreational, sports and educational facilities that are available to everyone;
• · Transition services for students with I/DD, to start at age 14, and to include internships, job site visits and mentoring, enabling students to leave school prepared for jobs in the community at competitive wages;
• · Significant funding sustained over a ten year period that redirects funds currently used to support services in segregated settings to those that incentivize services in integrated settings.

The ten year agreement will allow the state to ensure that the services necessary to support individuals with I/DD in competitive, integrated jobs will not disappear with a change in administration or legislative leadership. As a result of this commitment, the business community has already stepped up to partner with the state. The U.S. Business Leadership Network (USBLN), a network of Fortune 500 companies, and Walgreens will co-host a regional business summit in Rhode Island in June 2014 to explore how to improve those partnerships.

The agreement is the result of an ADA investigation that began in January 2013 into Rhode Island’s day activity service system for people with I/DD. The department, the state, and the City of Providence entered into an interim settlement agreement in June 2013. The interim settlement agreement focused on a single provider, which was one of the largest facility-based employment service providers in the state’s system, and a school-based sheltered workshop at a Providence, R.I., high school, which was a point of origin for many people entering the provider’s workshop.

The department continued its investigation of the statewide system, and in January 2014 issued findings determining that the statewide system over-relied on segregated services, to the exclusion of integrated alternatives, in violation of the ADA. The department found workers with I/DD in settings where they had little or no contact with persons without disabilities, and where they earned an average wage of $2.21 per hour. The investigation found that workers typically remain in such settings for many years, and sometimes decades. The department also found that students in Rhode Island schools were often not presented with meaningful choices to participate in integrated alternatives, such as integrated transition work placements and work-based learning experiences, which put students at serious risk of unnecessary postsecondary placement in segregated sheltered workshops and facility-based day programs.

Since June 2013, the state and city have provided supported employment services to people with I/DD transitioning from the original two facilities covered by the interim settlement agreement. Many of these individuals have now accessed jobs in typical work settings where they can interact with non-disabled coworkers and customers, and enjoy the same employment benefits as their non-disabled peers. Individuals have secured jobs at both locally owned and national companies. Because of the interim settlement agreement, Pedro , an individual who transitioned from the in-school sheltered workshop to the adult workshop, where he earned just 48 cents an hour, is now making minimum wage working at a restaurant. Peter , another former sheltered workshop employee who was earning approximately $1.50 per hour, now has a job earning more than minimum wage working for the state as a custodian at a hospital. Louis has gone from earning sub-minimum wages performing rote tasks at the sheltered workshop to a full-time position at a state hospital, where he uses his strong computer skills and passion for mathematics to generate Excel reports, record time sheets, and complete other office tasks.

For more information on these individuals and others, please visit the Department’s Faces of Olmstead website .
Please visit www.ada.gov/olmstead to learn more about the Division’s ADA Olmstead enforcement efforts, and www.justice.gov/crt to learn more about the laws enforced by the Justice Department’s Civil Rights Division

Rhode Island Registry

Previous posts have discussed autism registries. The Brown Daily Herald reports:

University scientists are key players in a new program aiming to advance autism research by creating a statewide registry of patients who have been diagnosed as on the spectrum. Spearheaded by the Rhode Island Consortium of Autism Research and Treatment, also known as RI-CART, the program gained funding through a variety of sources, including two recent grants totaling over $1 million.

RI-CART’s mission is to “improve the lives of Rhode Islanders with autism spectrum disorders by promoting collaborative, cutting-edge research, improving health care and support services and providing data-driven education and advocacy,” according to the organization’s website. The 14-member organization, including Brown University and Bradley Hospital, comprise an interdisciplinary group of researchers, physicians and educators.

RI-CART currently has its sights set on creating a statewide registry of autism patients which researchers could use to learn more about the neurologic disorder, said Stephen Sheinkopf, co-director of RI-CART and assistant professor of psychiatry and human behavior and pediatrics.

The registry will include patients’ demographic information, medical history, official diagnosis, severity of symptoms and even information biological samples, said Sheinkopf, whose research focuses on the early identification of autism in children.

Governors Sign Insurance Bills in Rhode Island and Louisiana

Autism Speaks provides a couple of updates on insurance legislation in the states.

Rhode Island:

Gov. Lincoln Chafee has signed a pair of bills enabling Rhode Island families to access insurance coverage for Applied Behavior Analysis (ABA) as intended under the autism insurance reform bill he signed last year, and adds pharmacy, psychology and psychiatric care as eligible benefits.

The 2010 law required that ABA be provided and supervised by a state-licensed Board Certified Behavior Analyst (BCBA), despite the fact Rhode Island has no such licensing process. As a result, fanmilies have been unable to access coverage for ABA care.

The new bills signed by Chafee include SB.2559 which creates a five-member Applied Behavior Analyst Licensing Board within the state Department of Health so that practiioners can get licensed in Rhode Island. The second bill, SB.2560, adds pharmacy, psychology and psychiatric care as eligible benefits.

SB.2560 also enables licensed psychologists to provide ABA provided they have "equivalent experence" or the therapy falls within "their scope of practice." Both laws take effect immediately.

Louisiana:

Governor Bobby Jindal signed legislation today expanding Louisiana's 2008 autism insurance reform law by raising the age cap to 21 and eliminating the $144,000 cap on lifetime benefits. Families paying thousands of dollars a year in insurance premiums will be able strating in 2013 to continue coverage for the screening, diagnosis, testing and treatment of autism spectrum disorder (ASD) for individuals aged 16 through 20.

Sponsored in the Louisiana House of Representatives by Rep. Franklin Foil (R-Baton Rouge), the bill eliminates any ceiling on lifetime benefits. Under the 2008 law, coverage ended once lifetime claims reach $144,000. In addition, the new law eliminates the current requirement that treatments be supervised by a physician or psychologist. A $36,000 annual cap on benefits is retained, but coverage was expanded to include firms with 10 employees or less. The current threshold exempted business with 50 employees or less.

Insurance in Utah, Virginia, and Rhode Island

The Deseret News reports:

Legislative leaders say they're trying to work out a compromise between a bill to mandate health insurance coverage for autism, and another bill that seeks to discourage any insurance mandates in Utah.

That compromise likely will not be similar to laws now in effect in 29 other states that do require health insurance plans to pay for treatment for autism spectrum disorders, said Utah House Majority Whip Greg Hughes, R-Draper.

While details of that plan have yet to be worked out, he said, it would likely involve a fund to which health care insurers would make voluntary contributions to help families pay for their children's treatment, Hughes said.

Anita Kumar writes at The Washington Post:

Gov. Bob McDonnell (R) has signed a bill — again — to provide insurance coverage for families with autistic children, according to his office.

McDonnell (R) had originally signed a bill into law last spring mandating coverage, but Attorney General Ken Cuccinelli (R) determined that the legislation contained imprecise languagethat legislators needed to correct.

Since then, families who expected insurance coverage have continued to pay out of pocket — if they can afford it — or forgo treatments they say could help their children learn basic skills such as walking and talking.

...

The bill directs the state to write regulations within 280 days for those who teach applied behavior analysis to autistic children. That means coverage should start by the end of the year.

The Brown Daily Herald reports:

A bill to expand autism treatment by amending legislation passed last year that mandated insurance coverage for autism diagnosis and treatment in children is awaiting consideration in the Rhode Island General Assembly.

The House of Representatives and Senate bills — sponsored by state Rep. Peter Palumbo, D-Cranston, and state Sen. Edward O'Neill, I-Lincoln, North Providence and Pawtucket — would slightly alter the wording of last year's law by adding psychiatric, psychological and pharmaceutical treatments to the list of services insurance providers must cover. The current law specifies mandatory coverage for speech, physical and occupational therapies.

The amendment would shift the focus toward earlier intervention in diagnosing and treating autism spectrum disorders, O'Neill said. The amendment would also require that practicing behavior analysts — specialists who work with and recommend resources to people recently diagnosed with autism and other brain-based disorders — be licensed with the Rhode Island Department of Health. The law currently allows any licensed health care provider to practice applied behavior analysis.

The legislation moved forward after being endorsed by the state's Joint Commission to Study the Education of Children with Autism, said Judith Ursitti, the director of state government affairs for Autism Speaks, an autism advocacy organization. Ursitti, who has worked to get similar laws passed in other states, testified before the commission on the importance of both last year's legislation and the proposed amendments. Palumbo also chairs the commission.

TV Report on the Rhode Island Mandate

WJAR in Providence reports on the new insurance mandate law in Rhode Island:

A Ceremony in Rhode Island

The Providence Journal reports on a ceremony surrounding an insurance mandate:

Governor Chafee on Thursday morning held a ceremonial signing of legislation that requires insurers to to provide coverage for the screening, diagnosis, and treatment of autism spectrum disorders.

He was joined by families of, and advocates for, people with autism, as well as Rep. Peter Palumbo, D-Cranston, and Sen. Edward O'Neill, D-Lincoln, the legislation's primary sponsors, for the State House event.

The legislation -- H5275 and S107 - is meant to help alleviate the financial strain faced by parents of children with autism, who often cannot afford early and intensive behavioral therapies that advocates say are effective in helping children learn to talk and better relate to other people and their environments.

For the most severely affected children, these treatments can cost $50,000 a year or more, families and advocates have said.

The new state law requires health insurers to cover up to $32,000 a year in autism diagnosis and treatment for children, up until their 15th birthdays. Among the treatments required to be covered are behavioral therapies.

Rhode Island became the 27th state to mandate coverage for autism when Chafee officially signed it into law at the end of June.

Insurance Mandate Moves in Rhode Island

WJAR in Providence, RI reports on passage of an insurance mandate in the Rhode Island House:

Rhode Island Mandate Advances

The Providence Journal reports:

The Rhode Island Senate has passed a bill that would require private insurers to provide up to $32,000 a year in benefits for medically prescribed behavioral therapies for children on the autism spectrum up to their 15th birthdays.

State Sen. Edward O’Neill and state Rep. Peter Palumbo have sponsored companion bills in both houses of the General Assembly for the past two years to help alleviate the financial strain faced by parents of children with autism, who often cannot afford early and intensive behavioral therapies that have been shown to be effective in helping youngsters learn to talk and better relate to other people and their environments.

For the most severely affected children, these treatments can cost $50,000 a year or more, according to testimony before the General Assembly.

The Senate bill, which passed Thursday, had the backing of Senate President M. Teresa Paiva Weed.

Palumbo’s bill is scheduled for a final floor vote in the House on Tuesday, according to Autism Speaks, a nationwide nonprofit group that took a lead in 2011 in organizing parents and other advocates to push for insurance coverage.

State Insurance Mandate Legislation

In Rhode Island, the Providence Journal reports:

Nineteen-year-old Eric Duquette, salutatorian at Smithfield High School in 2010 and a freshman at Rhode Island College, personifies the possibilities of early, intensive behavioral treatment for children with autism.

Duquette, who lost all language as a toddler and didn’t speak again until he was 5, took the podium in the House lounge Thursday and urged the General Assembly to pass legislation that would require commercial health-insurance carriers to cover medically validated behavioral treatments for children diagnosed with autism. Twenty-six states have passed similar legislation.

He spoke at an autism-awareness event organized by the Rhode Island Autism Coalition, which honored two legislators who have introduced the autism insurance bills for two consecutive years. They are Sen. Edward J. O’Neill, I-Lincoln, North Providence and Pawtucket; and Rep. Rep Peter G. Palumbo, D-Cranston. Both have children with autism.

While the bills are stalled in committee, O’Neill said, he is still optimistic that the legislation will pass, noting that one of the sponsors this year is Senate President M. Teresa Paiva Weed, D-Newport.

Autism Speaks celebrated AZ Governor Jan Brewer's veto of a bill that would have ended insurance mandates:

Autism Speaks, the nation’s largest autism science and advocacy organization, joined families across Arizona and around the country today in applauding Arizona Governor Jan Brewer for her courageous veto of Senate Bill 1593, misguided legislation that would have essentially reversed enacted autism insurance reform legislation and forced families to once again pay tens of thousands of dollars a year out-of-pocket for critical autism diagnoses and treatments -- even though they already have health insurance coverage.

“Governor Brewer showed remarkable leadership by standing up for the best interest of Arizona’s families and ensuring that Arizonans’ health care plans will continue to be regulated by Arizona law,” said Peter Bell, Autism Speaks executive vice president of programs and services. “We thank Governor Brewer for making this decision, which took incredible courage and will have an enormously positive impact on families affected by autism across the state. We also ask that the autism community at large take the time to thank Governor Brewer personally."

Autism Speaks launched a major traditional media, social media and grassroots campaign to persuade Governor Brewer to veto the bill, including a significant television ad buy. Advocates in Arizona and all across the country worked hard for two weeks contacting Governor Brewer to convince her that signing SB 1593 into law would be detrimental to both Arizona citizens and the autism community at large.

Mandate Action in West Virginia and Rhode Island

The Charleston Daily Mail reports:

Kanawha County Delegate Mark Hunt was saying "thank you" a lot to his fellow lawmakers Saturday night.

For the past six years, Hunt, a Democrat, has been pushing legislation aimed at easing the burden on families with autistic children.

That's included proposing tax credits for autism treatments as well as mandating insurance coverage for autism spectrum disorder.

But in each of those years, the state Senate and House of Delegates were unable to reach agreement on the measures, drawing criticism from Hunt.

But in the waning hours of the legislative session Saturday, the House unanimously approved an amended a version of House Bill 2693, which requires the Public Employees Insurance Agency, Children's Health Insurance Program and most private insurers to cover autism treatment beginning July 1, 2011.

When asked how he felt after the vote, Hunt said, "Great.

"It's been a real struggle to get this passed - we went through hell and back."

Supporters lobbied hard for the bill all session, staging several events at the Capitol along the way.

Members of autism awareness groups cheered from the House gallery as the measure passed.

AP reports:

Rhode Island insurance companies would be required to cover therapies for the treatment of autism under a bill in the state's General Assembly.

The House Corporation Committee will hold hearings on the bill Tuesday evening.

Parents of children with autism have long complained to lawmakers that insurers refuse to pay for expensive treatments for the disorder. Rep. Peter Palumbo, a Cranston Democrat, is the lead sponsor of the legislation.

Similar bills have been introduced around the country. The cost of autism treatments, often called applied behavior analysis, can run into the tens of thousands of dollars per year. Insurers have told lawmakers that mandating coverage of the treatments could lead to increased costs for all policy holders.

Autistic Salutatorian

A story from Rhode Island about the long-term benefits of early intervention and behavioral therapy:

Mandate Hearing in Rhode Island

The Providence Journal reports:

Shawn Donahue, who represents Blue Cross & Blue Shield of R.I., had just emerged from a hearing room in the State House, where he and other health insurance lobbyists had expressed skepticism about a bill that would require them to cover the diagnosis and treatment of autism.

The lobbyists had signed up to speak against the bill, but once they took a seat before the microphones, they shied away from spelling out their objections head-on.

Jason Martesian of UnitedHealthcare, told the House Committee on Health Education and Welfare that insurers had begun talks with the bill’s principal sponsor, state Rep. Peter Palumbo, and hoped to get back to him with “compromise language.”

Donahue suggested that the bill might lead to duplication of effort, in that insurers already pay assessments — about $5 million annually in the case of Blue Cross — to support early intervention services for very young children.

Outside the hearing room, Janes, the vice president and controller of Washington Trust Co., stepped up to Donahue and invited him to visit the treatment program of her daughter, Amelia.

Janes, a Blue Cross subscriber, assured Donahue that her health insurance does not pay for the intensive, highly specialized treatment called Applied Behavior Analysis. At one point, 40 hours a week of ABA for Amelia cost Janes $30,000 a year out of pocket, she told Donahue.

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Mandate Activity in Rhode Island

The Providence Journal reports on a legislative commission hearing on insurance and autism. Among the witnesses was autism mom Nicole Katzman.

Its chairman, state Rep. Peter G. Palumbo, D-Cranston, has introduced legislation that would require health insurers to cover a variety of treatments for autism prescribed by a physician or psychologist, including medications, psychiatric and psychological care, and treatments that include speech, occupational and physical therapy, as well as “habilitative or rehabilitative” care such as Applied Behavioral Analysis.

A similar bill has been introduced in the Senate by state Sen. Edward J. O’Neill, D-North Providence, Pawtucket, and Lincoln. O’Neill’s bill, influenced by Katzman’s experience, also would restructure existing state-financed services for children with autism.