Class-Action Insurance Lawsuit in Oregon

A previous post discussed Kaiser's decision to cover ABA in Oregon. In Portland, Oregon, KATU reports:

The family of an autistic boy is taking Providence Health Insurance to federal court, claiming their son has been denied treatments guaranteed by law.

The family has filed a class-action lawsuit, saying the insurance company should pay for what's become standard but expensive treatment for autism.

Lucy Alonso's been struggling just to pay for some treatments for her son's autism, but she can't afford much.

The federal class-action lawsuit says this is just the kind of treatment federal regulations and state law require insurance companies to cover.

KGW in Portland covers the same story:




The Portland Business Journal adds some details:

The suit alleges Providence illegally excluded the ABA treatment for the plaintiffs, who are covered through family plans — a parent’s employer in A.F.’s case and a grandparents’ employer in A.P.’s case.

Both boys families paid for the treatment out of pocket but had their requests for reimbursement denied, forcing them to stop.

The verdict will be determined by a judge and not jury under federal ERISA rules. It has not yet been assigned to a judge.

The case is: A.F. through his parents and guardians, and A.P. through his parents and guardians, versus Providence Health Plan; 0:13-cv-00776.

Boys, Girls, and Autism

The Wall Street Journal reports:

Why do boys get diagnosed with autism four times as often as girls?

New research, including some of the latest data from the International Society for Autism Research annual conference last week, addresses this question, one of the biggest mysteries in this field.

A growing consensus is arguing that sex differences exist in genetic susceptibility, brain development and social learning in autism—and they are meaningful to our understanding of the disorder and how it will be treated.

Yale University researchers presented results showing that being female appears to provide genetic protection against autism. Meanwhile, scientists at Emory University showed in preliminary work that boys and girls with autism learn social information differently, which leads to divergent success in interactions with other people.The new data, together with previously published studies, suggest that sex should be taken into account in diagnosing and in creating individualized treatment plans, according to experts.

...
 Understanding sex differences is important to getting the right diagnosis and treatment, said Christopher Gillberg, a child and adolescent psychiatry professor at the University of Gothenburg in Sweden. Because experts' understanding of the typical features of the condition is primarily based on research with boys, girls may be missed or misdiagnosed, he said. Some evidence suggests that girls are diagnosed, on average, later than boys.

OPM Seeks More ABA Coverage

Autism Speaks reports:

The agency in charge of managing health benefits for the nation's 8.2 million federal employees, retirees and dependents is urging its participating health plans to start covering ABA in 2014 or explain why they are refusing coverage.

The Office of Personnel Management (OPM) last year recommended for the first time that health plans participating in the Federal Employees Health Benefits (FEHB) program include coverage for applied behavior analysis (ABA). But of the 230 participating plans around the nation, only 67 offered the benefit for 2013 and many areas wityh large concentratiobns of federal employees, such as the National Captial Region, lacked coverage.

The coverage is significant as federal employees represent the largest single workforce in the United States. In March, a bipartisan coalition of 11 Members of Congress from Virginia, Maryland and the District of Columbia urged OPM to demand better coverage from FEHB's participating health plans.

As the health plans now start developing their 2014 coverage, OPM has issued guidance that “encourage[s] plans to offer Applied Behavior Analysis (ABA) for children with autism,” and requires them to complete an online survey. The survey asks insurers that cover ABA in one of the 32 states that has enacted autism insurance reform whether they cover ABA for FEHB members and, if they do not, in what year they plan to do so.

The text of the letter is here.

Transforming Diagnosis

At the NIMH blog, Thomas Insel writes:

While DSM has been described as a “Bible” for the field, it is, at best, a dictionary, creating a set of labels and defining each. The strength of each of the editions of DSM has been “reliability” – each edition has ensured that clinicians use the same terms in the same ways. The weakness is its lack of validity. Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure. In the rest of medicine, this would be equivalent to creating diagnostic systems based on the nature of chest pain or the quality of fever. Indeed, symptom-based diagnosis, once common in other areas of medicine, has been largely replaced in the past half century as we have understood that symptoms alone rarely indicate the best choice of treatment.

Patients with mental disorders deserve better. NIMH has launched the Research Domain Criteria (RDoC) project to transform diagnosis by incorporating genetics, imaging, cognitive science, and other levels of information to lay the foundation for a new classification system. Through a series of workshops over the past 18 months, we have tried to define several major categories for a new nosology (see below). This approach began with several assumptions:

• A diagnostic approach based on the biology as well as the symptoms must not be constrained by the current DSM categories,

• Mental disorders are biological disorders involving brain circuits that implicate specific domains of cognition, emotion, or behavior,

• Each level of analysis needs to be understood across a dimension of function,

• Mapping the cognitive, circuit, and genetic aspects of mental disorders will yield new and better targets for treatment.

Rising Prevalence of Disability Among Kids

A release from the American Academy of Pediatrics describes a study on disability prevalence. Dr. Amy Houtrow and colleagues find increasing disability among children, especially those in upper-income families.

The researchers analyzed data from the National Health Interview Survey conducted by the Centers for Disease Control and Prevention in 2001-2002 and survey data from 2009-2010. A total of 102,468 parents of children ages 0-17 years participated in the surveys.

Parents were asked whether their child had any limitations in play or activity, received special education services, needed help with personal care, had difficulty walking without equipment, had difficulty with memory or had any other limitation.

If they answered yes to any of those questions, they were asked whether their child’s limitations were due to a vision or hearing problem; asthma or breathing problem; joint, bone or muscle problem; intellectual deficit or mental retardation; emotional or behavior problems; epilepsy; learning disability; speech problems; attention-deficit/hyperactivity disorder; birth defect; injury or other developmental problem.

Researchers classified conditions into three groups: physical, neurodevelopmental/mental health and other.

Results showed that the prevalence of disability increased 16.3% from 2001-2002 to 2009-2010.

While neurodevelopmental and mental health-related disabilities increased, those due to physical conditions decreased. This trend was most notable among children under 6 years of age whose rate of neurodevelopmental disabilities nearly doubled over the study period from 19 cases to 36 cases per 1,000 children. [emphasis added]

“The survey did not break out autism, but we suspect that some of the increase in neurodevelopmental disabilities is due to the rising incidence or recognition of autism spectrum disorders,” Dr. Houtrow said.

The data also showed that children living in poverty experienced the highest rates of disability at both time periods but not the highest growth. The largest increase was seen among children living in households with incomes at or above 300% of the federal poverty level (about $66,000 a year for a family of four).

“We are worried that those living in poverty may be having problems with being diagnosed and getting services,” Dr. Houtrow said.

Since the study could not pinpoint why the disability rate is increasing, more research is needed, she concluded.

Pushing Back Against Cure Critics

James Terminiello has an emotional article in The South Jersey Times.  The father of a low-functioning autistic adult, he criticizes criticizes expansive definitions of autism and pushes back against those who oppose the quest for a cure.

Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize. Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.

It is time to stare directly at the plain, raw face of real autism: a world of painfully slow, unrewarding therapy carried out by near-angelic professionals who suffer very high burnout rates. It is a place where marriages are wrecked or destroyed amid tears, accusations, anger and arms thrust in the air to the words “I can’t deal with this anymore!” It is a realm where non-autistic siblings are often given short shrift by strained parents and grandparents.

At the center is the autistic person himself. Real autism borders on the metaphysical. It suppresses or deletes aspects of humanity that you thought were an immutable part of the basic human package. Real autistics live in a world of strange obsessions, confusion, totally missed signals, seizures and bouts of irrational anger. Concepts like death, God, love, embarrassment, urgency, are often beyond them.

The world of autism that I know features uncontrolled laughter, grunts and mumbling, hurled feces, nude walks in the street, drugs to quell anger and knife attacks.

Why paint such a dark picture? Because real autism is a dark picture. By expanding the definition to include quirky and colorful individuals who make good copy, autism seems to be getting an unneeded, glossy makeover. I’m happy for these individuals, whatever their condition may be, and wish them all the best, but calling them autistic is like saying a man with a broken finger is as handicapped as a quadriplegic.

As for me, I want my autism back.

The Benefits of Treatment

In Morgantown, West Virginia, WBOY-TV concludes its series on autism in West Virginia:

This week, we've seen the potential for autism treatment to help children in our state and the problems many still have accessing it. A parent-training program could help fill some of the gaps until a more permanent is available for families.

Twins Tristan and Autumn Hinebaugh receive treatment at West Virginia University's Center for Excellence in Disabilities, and their family was part of a pilot program to take some of the treatment home.

The Parent Implemented Training for Autism through Telemedicine (PITA-T) program is funded by a five year grant to expand professional autism treatment to remote or rural areas.
...
Dr. Susannah Poe, the director of the autism clinic, hopes lawmakers will take up the case for more coverage so no child is denied the same results.

"We're finding that it doesn't cost nearly as much as people think it does, and the benefits are just priceless," she said. "There's no way to replace the value of a Tristan or an Autumn who become typically developing kids and end up as productive members of society."

WBOY.com: Clarksburg, Morgantown: News, Sports, Weather

What Causes Autism? Take Your Pick.

What causes autism?  The list continues to grow.  Even if all the science is perfectly good, it would be understandable if concerned laypeople just threw up their hands in frustration.

In BMJ [formerly British Medical Journal], Dheeraj Rai and colleagues finger antidepressants:

In utero exposure to both SSRIs and non-selective monoamine reuptake inhibitors (tricyclic antidepressants) was associated with an increased risk of autism spectrum disorders, particularly without intellectual disability. Whether this association is causal or reflects the risk of autism with severe depression during pregnancy requires further research. However, assuming causality, antidepressant use during pregnancy is unlikely to have contributed significantly towards the dramatic increase in observed prevalence of autism spectrum disorders as it explained less than 1% of cases.

The Daily Beast mentions ultrasound:

Manuel Casanova, a neurologist who holds an endowed chair at the University of Louisville in Kentucky, is one medical doctor who is listening. Casanova contends that Rakic’s mice research helps confirm a disturbing hypothesis that he and his colleagues have been testing for the last three years: that ultrasound exposure is the main environmental factor contributing to the exponential rise in autism. 

The Wall Street Journal cites studies on insecticides and air pollution:

Researchers at an international conference on autism on Friday presented three new studies lending strength to the notion that environmental influences before birth may play a role in the risk for the condition.

In one study, pregnant women who were exposed to certain levels of air pollution were at increased risk of having a child with autism. Another presentation suggested that iron supplements before and early in pregnancy may lower the risk, and a third suggested some association between use of various household insecticides and a higher risk of autism.

A release from the University of Manchester discusses research into birth weight:

The biggest study of fetal growth and autism ever has reported that babies whose growth is at either extreme in the womb, either very small or very large, are at greater risk of developing autism.

It is the first time that a clear link has been made between babies who grow to above average size at birth and risk of Autism Spectrum Disorder and follows from a study of more than 40,000 child health records in Sweden.
...

To view the paper, published in The American Journal of Psychiatry, click here. To view the editorial article in the Journal about the research, please click here.

Social Isolation of Young Adults with ASD

A release from Washington University

Young adults with an autism spectrum disorder (ASD) are more likely to never see friends, never get called by friends, never be invited to activities and be socially isolated.

That’s the finding of new research released online this week in the Journal of Autism and Developmental Disorders that studies the social outcomes of young adults with an ASD.
The study is part of a pioneering program of research on adolescents and adults with autism led by Paul T. Shattuck, PhD, associate professor at the Brown School at Washington University in St. Louis. Lead author is Gael I. Orsmond, PhD, associate professor in the department of occupational therapy at Boston University and an expert on the social development of adults with an ASD.

“This is another study from our project that demonstrates the many difficulties awaiting young adults with an ASD once they leave high school,” Shattuck says. “Autism is a lifelong challenge for most, and we need to find better ways of supporting people during this transition to adulthood.”

The study used data from the National Longitudinal Transition Study 2 and examined social participation among young adults with autism vs. those with other types of disabilities: intellectual disabilities, emotional/behavorial disabilities or learning disabilities.
The study also focused exclusively on young adulthood, the period, authors say, most crucial in forming and maintaining lifelong relationships.

The findings, over a 12-month period:

• almost 40 percent of youth with ASDs never got together with friends;
• 50 percent never received phone calls or were invited to activities; and
• 28 percent were socially isolated with no social contact whatsoever.

 “Difficulty navigating the terrain of friendships and social interaction is a hallmark feature of autism,” Shattuck says. “Nonetheless, many people with autism do indeed have a social appetite. They yearn for connection with others. We need better ways of supporting positive social connection and of preventing social isolation.”

This study was supported by funding to Shattuck from the National Institute of Mental Health; Autism Speaks; the Emch Foundation; and the Organization for Autism Research. Other authors are Benjamin P. Cooper of the Brown School; Paul Sterzing, PhD, assistant professor at the School of Social Welfare of the University of California, Berkeley; and Kristy A. Anderson of the University of Wisconson-Madison.

 To read the full article, visithttp://link.springer.com/article/10.1007%2Fs10803-013-1833-8.

Ohio State Employee Benefits

A release from the Governor of Ohio:

State of Ohio employees and their families with autism will be able to receive treatment as part of their employee health insurance benefits beginning July 1, 2013. The announcement today is a result of Governor John R. Kasich’s pledge late last year to make autism benefits available to State of Ohio employees, and negotiations recently concluded with state employees’ unions to revise the contractually-negotiated employee health plan. Ohio Department of Administrative Services Director Bob Blair, in cooperation with Joint Health Care Committee (JHCC) Co-chairs Kelly L. Phillips and Michael J. D’Arcy, solidified the language used in the contract earlier this week.
...
Beginning at the start of the next fiscal year, state employees and their dependents will receive access to quality healthcare for ASD including physical, speech and occupational therapy, clinical therapeutic intervention, and mental and behavioral health outpatient services.
Autism services are being defined as part of the “essential health benefit” package offered through the state employees’ health plan, some private health insurance and health insurance sold through the upcoming federally managed health insurance exchange.

TV Reports on Autism in West Virginia

WBOY has a series of reports on autism in West Virginia, a year after the state enacted an insurance mandate.

Part One:

There have been significant strides in autism treatment in West Virginia over the last year, but there is a long road ahead for autistic children and the services needed to treat them.

Gov. Earl Ray Tomblin signed West Virginia's Autism Insurance Reform Law(HB 2693) April 2, 2012 at West Virginia University's Center for Excellence in Disabilities. It has a small Intensive Autism Service Delivery Clinic, which serves five children.

Tristan and Autumn Hinebaugh are twins who receive hours of one on one instruction at the clinic.

...
The law provides up to $30,000 a year for necessary treatment of children for up to three years. After that, the benefit reduces to $2,000 a year until they are 18 years old. The child must be diagnosed before they turn 8 years old.

There are gaps in the coverage, though. Only businesses with more than 25 employees are compelled to offer the coverage, excluding self-insured companies. That means only 23 percent of children in West Virginia are covered by the new law.

That leaves almost 75 percent without access to the treatment Tristan and Autumn receive, or their results.

Part Two:

We have a waiting list that we've quit taking names for because the children age out," said Dr. Susannah Poe, the director of the clinic. "They're 6 and 7 before we even have an opportunity to bring them in and it breaks our hearts."

If it weren't for the clinic, the Hinebaughs couldn't afford the care they receive. Tina said her employer is self-insured and so is not a part of the autism law. That means Tristan and Autumn are not covered.

Dr. Poe estimates that more than 75 percent of West Virginia children are in the same situation, blocked from funding for this type of treatment and its results.

"There has not been one child who has not made remarkable, affirming, progress," Dr. Poe said of the treatment at the clinic.

Of the estimated 23 percent of children who are covered, they still face difficulties gaining access to treatment. Dr. Poe said there are only 40 Board Certified Behavior Analysts (BCBA), like Emily Morris, in the entire state.

Part Three 

At West Virginia University's Center for Excellence in Disabilities, it's not hard to find students or volunteers willing to work with autistic children, like Tristan and Autumn Hinebaugh.

"To the point where they come in as students, and then they stay another year," said Dr. Susannah Poe, the director of the autism clinic. "Once you do this work, it's hard to walk away from it. There's not too much that's more rewarding."

The students, volunteers, and basically anyone who works with the children light up whenever they see or talk about them.

"They are extremely fun, wonderful kids," mom Tina Hinebaugh said. "They're a child first. They just happen to be autistic."

The clinic is a training ground for WVU's applied behavioral analysis program, but there hasn't been a market for their skills until now.

"We don't tend to retain a lot of the students who graduate from our university because they can't get jobs here," said Emily Harris, a Board Certified Behavioral Analyst (BCBA) and WVU graduate.

Canadian Parents Give Up Son to Government

CBC reports:

Unable to get enough help from social services, an Ottawa family says they had no choice but to leave their son — who is living with severe developmental delays — in the hands of the government.

Amanda Telford said she brought her 19-year-old son Phillip to a provincial developmental services office on Tuesday and left him there.

...

Telford said she’s asked for help from both provincial and Ottawa city agencies, as well as her local member of Parliament and member of the Ontario legislature.

She said the response has been there’s no room for Phillip in the over-burdened, under-funded social system.

"My husband and I are absolutely exhausted and medically unwell,” she said. “I am not able to do this anymore."

Autism Ontario caseworker Anne Borbey-Schwartz said the Telford’s situation is not unique. There has been a rise in the number of developmentally delayed adults with autism.

 

Waive Requirements at the District Level?

The Los Angeles Daily News reports:

A coalition of civil rights groups is opposing efforts by Los Angeles Unified and eight other school districts to get a waiver from a federal law requiring that all students be proficient in English and math by 2014.

In a letter sent Monday to U.S. Education Secretary Arne Duncan, the groups say that exempting the districts from the No Child Left Behind law would create disparate systems for measuring student achievement.

"Considerable experience tells us that for low-income students, students of color, Native students, English-language learners and students with disabilities, different expectations far too often mean lowered expectations," said the letter, whose authors include Democrats for Education Reform, The Education Trust and the National Women's Law Center.

California Education Department officials have previously voiced concerns about having differing standards for individual districts.

The Huffington Post adds more detail:

Obama gave Congress a Fall 2011 deadline to rewrite the then long-since-expired law, but that didn't happen. So he and Duncan moved ahead with a plan to help states move out from under NCLB's strictures without legislative action: The U.S. Education Department gave states waivers from AYP if they agreed to adopt elements of the administration's education agenda, such as teacher evaluations based, in part, on student test scores.

California didn't exactly comply with everything the administration asked for, so its NCLB waiver request was denied. Now, a group of school districts in the state -- known as the California Office to Reform Education, or CORE -- wants to go over the state's head to get its own waiver. COREincludes school districts in San Francisco, Sanger, Oakland, Sacramento, Long Beach, Clovis, Fresno, Los Angeles, Garden Grove and Santa Ana. Their waiver request is now under peer review at the Education Department.

But some disabilities advocates are worried about the precedent the CORE waiver could set if approved, since it doesn't address testing for students with disabilities.

Until now, states have created modified assessments for students with disabilities -- and in some states, these exams rely on different standards, cutting students off from obtaining a diploma. California is one such state.

"They're putting too many students off track to get a regular diploma to make it look like most students are passing tests," explained Laura Kaloi, the policy director for the National Center for Learning Disabilities.

The state NCLB waivers only allow students with the most severe disabilities to take modified exams. But since California was denied that waiver, and since the CORE waiver application doesn't address the issue, Kaloi remains concerned that some students with disabilities in both CORE and other California districts will continue to be denied diplomas.