Today the World Health Assembly adopted a formal resolution making autism a global health priority. The assembly is the governing body of the World Health Organization (WHO). As such, the resolution brings a formal commitment by member states of the United Nations.
Autism Speaks’ Andy Shih announced the good news of the WHO resolution on autism this morning at the meeting of the Autism Speaks Global Advocacy Leadership Network.Andy Shih, Autism Speaks senior vice president for scientific affairs announced the good news this morning at the second annual meeting of Autism Speaks Advocacy Leadership Network, in New York City. (More about this year’s meeting here.) Dr. Shih heads Autism Speaks Global Autism Public Health initiative.
“The World Health Assembly, comprised of health ministers from around the world, adopted a new autism developmental disabilities resolution early this morning,” said Shih. “This historic resolution firmly establishes autism as a global public health priority and provide stakeholders everywhere a powerful new advocacy tool.”
The resolution was co-sponsored by more than 50 countries and supported by all members, including the U.S. It sets out a clear set of actions to be undertaken by WHO member nations to support individuals, families and communities affected by them.
Read the full resolution – “Comprehensive and Coordinated Efforts for the Management of Autism Spectrum Disorders” – here. Listen to Dr. Shih’s call to action at the WHO’s first conference on autism last year.
For the original article published on Autism Speaks website, see the link below:
Knowing what an employer wants to hear can make all the difference during a job interview.
For adults with an autism-spectrum disorder, those answers can be harder to come by. And without work, they face the prospect of a much less independent life.
But early evidence suggests some job-training programs geared for these individuals appear to improve interview skills and self-confidence.
Much of the focus on autism, a developmental disorder characterized by social deficits and repetitive behavior, has centered on the diagnosis and treatment of young children. But for parents and experts, the question of what happens when these patients grow older and age out of social services looms large. More than half of adults with autism in the U.S. are unemployed, according to studies.
Kat Wyand, seen performing on a New London, Conn., radio show in 2013, says job training at Northwestern University tailored for those with autism helped her. John Lamar
Parts of the job-seeking process can be missed or misinterpreted by people with autism. They may not engage in small talk to ingratiate themselves to colleagues or employers. Networking can make them anxious. Many need to hear that they should write a cover letter even if a job description only asks for a résumé, says Lydia Brown, a former project assistant at the Autistic Self-Advocacy Network and an Arabic and Islamic Studies student at Georgetown University.
Scientists from Northwestern, Vanderbilt and Yale universities are studying whether interview skills can be improved through a computer-based program that uses a virtual-reality interviewer dubbed Molly.
On screen, Molly is a young but professional-looking brunette whose voice comes from an actress who recorded 2,000 questions and answers related to job interviews.
Technologically, she is based on sophisticated person-simulation software originally designed to train FBI agents to interrogate witnesses, says Dale Olsen, who developed the initial technology in 1995 when he was a scientist at Johns Hopkins University’s Applied Physics Laboratory. He is now the chief executive of a Columbia, Md.-based company called Simmersion, which sells training systems using the technology.
Molly, a computer-based tutorial on job interviewing for people on the autistic scale. Simmersion LLC
The trainees start by filling out an application processed by the program to determine the most appropriate questions for applicants. For instance, if people have gaps in their work history, Molly may ask applicants to explain them.
In addition, Molly can be programmed to three levels, from nice to brusque. Trainees learn to navigate these situations by choosing from a set of responses to each question. After each selection, they hear feedback about how well they answered.
The feedback is intended to help trainees build rapport with an interviewer. For instance, when asked if they have experience, some trainees initially may respond “no,” without realizing that such a response may hurt them. Gradually, they may learn a more effective response, like, “No, but I’m a fast learner.”
In the study, 26 adults ages 18 to 31 were assigned either to work with Molly on up to 20 trials over a 10-hour period, or to their usual treatment. They all were also interviewed by researchers at the beginning and end of the study.
The Computerized Guru
Virtual job interviewer Molly tailors her feedback to different answers:
MOLLY: How are your computer skills?
ANSWER: I’ve done a lot with computers, and I’m very comfortable using them.
FEEDBACK: This is a good response if you have past experience working with computers.
ANSWER: I’m not very good with computers.
FEEDBACK: This is not a good way to present yourself in a positive light. There are better ways to share your lack of skills. Asking about training or stating that you think you could learn if you had a chance would be a better option.
ANSWER: I haven’t had a lot of opportunities to work with computers, but I’m interested in learning more. Do you provide training?
FEEDBACK: This is a good way to reveal your lack of experience. Molly will not expect you to be perfect, and there is likely a training program in place.
ANSWER: I can do anything with computers. If you need to fix them or upgrade them or hack into something, then you should hire me.
FEEDBACK: You sound like you are not honest. Molly is not going to want to hire someone who offered to hack into a computer for fear you will do something similar while at work.
The data showed that those who worked with Molly reported better self-confidence and better performance scores in the mock interviews over time. A preliminary data analysis, still unpublished, suggests that those who received training with Molly were more likely to get competitive positions than those who didn’t, says Matthew Smith, research assistant professor of psychiatry and behavioral sciences at Northwestern. He is also first author on the study, which was published in the Journal of Autism and Developmental Disorders.
Kat Wyand, 25, was diagnosed with Asperger syndrome, a mild form of autism, when she was 16, and told by teachers and therapists that her deficits with social skills would prevent her from getting a job. Ms. Wyand was devastated. She went on to get a bachelor’s degree in audio arts and acoustics at Columbia College in Chicago, but had trouble finding work. She says she sent out a number of applications but received few interviews and doesn’t know why.
When she heard about the study at Northwestern, she immediately got in touch. She says she learned what to say to start an interview, and to condense her answers, since she had a tendency to ramble. However, with the computer program, she says she wasn’t able to get feedback on her body position or tone of voice, which is something she has trouble with.
Since then, she has found a part-time job as a bookkeeper at an art gallery where she had been volunteering. Now she is considering teaching guitar, something she previously wouldn’t have considered.
“I’ve lifted myself from the depression, but it’s taken years,” Ms. Wyand says. “Now I’m feeling hopeful that I actually have talents that I can use and get employed.”
Other programs with research evidence behind them include JobTIPS, a Web-based service that includes videos, printable guides and assessments. In a randomized study, 22 teens between 16 and 19 years old completed the training, while another group didn’t. Those who went through JobTIPS exhibited more effective interview skills after the training, according to the paper published in the Journal of Autism and Developmental Disorders in 2013.
Other programs take a more traditional, internship-based approach to job training. At Virginia Commonwealth University, Paul Wehman has been running a trial since 2009. It assigns six to eight high-school students with autism each year to a nine-month internship program at area hospitals, with others getting treatment as usual in school.
Trying to take advantage of some of the skills of people with autism, such as attention to detail, internships have included ambulatory surgery rotations where students sterilize surgical equipment. Students have also worked in the pharmacy, where they fill bottles of medication.
Two years after the internships, of the 20 who were employed after graduation, 17 are still at the job, two were terminated and one moved away, Dr. Wehman says.
Marsha Mailick, director of the University of Wisconsin-Madison’s Waisman Center, which helps teens with autism move into adulthood, says that she supports any program that increases the likelihood of employment. But interview training hasn’t been demonstrated as the most effective strategy, she says.
She suggests that parents network and think creatively to help their children obtain, as soon as possible, jobs that give gratification and occupy many hours a week. A job is “therapeutic,” she says.
The original article was published by the Wall Street Journal at the link below
In response to widespread confusion over autism and insurance coverage, Autism Speaks is introducing a new interactive web tool to help families determine whether they should be entitled to coverage through their specific health plan.
Called the Autism Speaks Insurance Link, the new tool leads families through a short series of questions to determine whether their policy covers common autism treatments, such as applied behavior analysis (ABA), and physical, speech and occupational therapy. The application was developed over a period of months and addresses the multiple forms of insurance coverage available to the autism community.
“Understanding basic insurance coverage does not lend itself to simple ‘yes’ or ‘no’ answers. Throw in coverage for autism benefits and the picture grows more confused,” said Lorri Unumb, Autism Speaks executive vice president for state government affairs.
“Families in the autism community have long asked us to help lead them out of this maze,” she said. “We believe the Autism Speaks Insurance Link will help answer many questions for our families.”
Until recently, such benefits have been largely unavailable through any health insurance coverage because insurers deemed autism a diagnostic exclusion and denied coverage for ABA and other therapies.
Due in large part to the efforts of the Autism Speaks’ Advocacy Team, 34 states and the District of Columbia now have laws on the books requiring coverage of ABA and other autism benefits in state-regulated health plans. These include some combination of individual and fully funded small group (fewer than 50 employees), large group and state employee health plans.
In addition, Autism Speaks has helped fight for changes in Congress to TRICARE, the health care plan for the military, and with the Office of Personnel Management for changes to the Federal Employees Health Benefits program.
But self-funded “ERISA” health plans, typically offered by larger employees, are governed by federal law and are not required to offer any autism-related coverage. Autism Speaks has worked with many large employers to voluntarily offer autism benefits, but there is no legal requirement.
In addition, some state laws set dollar or age caps on benefits, and military families and federal civilian employees face significant gaps in their coverage.
The Autism Speaks Insurance Link helps families sort through the various types of insurance, restrictions and caps to determine if they are entitled to benefits. lf entitled to coverage, the tool will provide details of the coverage required by state law along with resources to assist in claims reimbursement.
If coverage is not available, such as under an ERISA plan, the Insurance Link will equip families with tools to effectively advocate for the addition of a meaningful benefit.
On April 2 2014, Autism Speaks celebrated World Autism Awareness Day with the 5th annual Light It Up Blue campaign and a series of awareness events. Over 10,000 homes, businesses and landmarks in 136 countries on 7 continents lit up blue to shine a bright light on autism. People around the world participated in Light It Up Blue to raise autism awareness. Autism Speaks created the video below with highlights from around the world of those who celebrated autism awareness by lighting it up blue.
ANNAPOLIS (May 5, 2014) — Gov. Martin O’Malley today signed a professional licensing bill for behavior analysts, the final step in Maryland’s multi-year effort to require insurance coverage of medically necessary autism treatment. By virtue of the bill-signing, Maryland became the 37th state to enact autism insurance reform.
The bill-signing by O’Malley followed the enactment of new regulations in March by the Maryland Insurance Administration (MIA) that require coverage of autism treatment by fully funded small and large group plans, the state employee health plan, and coverage purchased through Maryland’s health insurance marketplace created under the Affordable Care Act.
Coverage is required through age 18 for psychological care; speech, occupational and physical therapy; and behavioral health treatment, including applied behavior analysis (ABA). A minimum of 25 hours weekly of ABA has to be covered through age 5; from age 6 through 18, the requirement drops to 10 hours weekly.
The law signed by O’Malley, created a state licensing process for behavior analysts. Without the law, access to ABA therapy was limited to a smaller pool of practitioners licensed in other fields, such as psychology.
“Autism Speaks applauds Governor O’Malley, our legislative champions and partner organizations for bringing this process to a successful conclusion, delivering urgently needed insurance coverage to Maryland kids with autism,” said Judith Ursitti, Autism Speaks director of state government affairs. “In particular, we thank Senators Kathy Klausmeier and Mac Middleton, Speaker Mike Busch and Delegates Kirill Reznik, Ariana Kelley, and Pete Hammen for their many hard years of work on this issue.
Maryland followed a different path than the 36 other states which have enacted autism insurance reform. While debating a bill that would have required the coverage in 2012, the Legislature chose instead to pursue regulatory changes to its existing habilitative care law.
Following a year of study, MIA first proposed regulations in September 2013. But the proposal drew so many demands for changes that a revised set was issued early in 2014, incorporating a number of the requested changes.
Autism Speaks, Pathfinders for Autism and the Maryland Association of Behavior Analysts will host a series of information session thsi month to familiarize families and providers with the new regulations. Learn more here.
Maryland joins Nebraska and Utah which have enacted reform this year; the North Carolina Senate next week starts work on finalizing a bill approved last year by the state’s House of Representatives.
For the original article published on Autism Speak’s website, see the link below:
Ready for a career where you can make a difference?
The implementation of autism insurance laws has been frustrated at times by demands that practitioners of applied behavior analysis (ABA) gain a state license before their services can qualify for reimbursement — even in states that do not have licenses for behavior analysts. The Autism Speaks Legal Resource Center joined recently in a lawsuit that successfully overturned such a demand in California. Dan Unumb, executive director of the center, weighs in.
In a case brought by Consumer Watchdog, the California Court of Appeals ruled on April 23 that the state’s Department of Managed Health Care (DMHC) erred by allowing insurers to deny coverage of ABA therapy provided by behavior analysts who are nationally board certified, but for whom no license has been created under California law.
Because only a small number of persons licensed in other professions in California are trained to provide ABA, DMHC’s policy led to delays and denials of medically necessary treatment.
The DMHC policy was also contrary to the position of the state’s other regulator of insurance—the California Department of Insurance—and the terms of California’s 2011 autism insurance law which applies to other insurance policies not involved in the case. That statute requires coverage of ABA when provided or supervised by Board Certified Behavior Analysts certified by the Behavior Analyst Certification Board (BACB), a professional accreditation organization which certifies behavior analysts nationally and internationally.
Similar to state licensing laws, BACB certification requires meeting rigorous education, fieldwork, and examination requirements, as well as continuing education requirements and adherence to ethical standards.
The Autism Speaks Legal Resource Center filed a friend-of-the-court brief which I authored along with Robert Barnes of the national law firm Kaye Scholer.
In the brief, we noted that while an increasing number of states have adopted a license for behavior analysts, the vast majority of states still do not have such a license. Instead, they provide that insurance-reimbursed ABA services can be provided or supervised by Board Certified Behavior Analysts (BCBAs).
Absent a state license for behavior analysts, BACB certification is the only credential that reflects and requires expertise in behavior analysis. Even in states that have created a state license for behavior analysts, BACB certification is the key prerequisite to obtain a license. States requiring insurance coverage of ABA also follow the BACB-approved and clinically validated tiered delivery model where a BCBA supervises behavior technicians who provide line therapy to the child who may need as much as 30 to 40 hours a week of therapy to achieve effective long term results.
In our brief, we pointed out that in addition to the legislature’s approval of BCBA practice under California’s 2011 ABA insurance statute, unlicensed BCBA’s have effectively delivered ABA services for years in California, including under contracts with the state’s Regional Centers which provide services to the disabled.
The Court of Appeals agreed that the lack of a California license for behavior analysts could not be a basis for denying medically necessary ABA therapy by BCBAs. The court held that the “ABA statute constitutes legislative approval of the practice of ABA by BACB-certified providers and individuals under their supervision. That legislative approval effectively qualifies BACB-certification as a “license” to provide ABA.”
The court went on to make clear that the 2011 autism insurance law applied even to therapy delivered under plans not expressly covered by the statute, such as California’s public employee plans (CalPERS). According to the court, “legislative authorization to provide ABA in this state cannot depend upon the health plan in which a patient is enrolled. To hold otherwise would create an irrational inconsistency in our state licensing laws.”
The California ruling may be useful in other states which have not yet adopted a license for behavior analysts. Most importantly, families insured through CalPERS plans will now be able to access medically necessary services just like other families. The children of firefighters, teachers and others covered by CalPERS deserve no less.
Below is the link to the original article posted on Autism Speaks website on Friday, May 2nd.