Category Archives: Autism

Free online site to help parents with children coping with ADD/ADHD

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In the U.S., one in five children struggles with a learning and/or attention issue. That’s 15 million kids ages 3–20, and many of their issues go undiagnosed.

The adults in their lives often have a hard time understanding their issues due to misconceptions and a lack of information and resources.

As a result, these children often face both academic and social challenges.

However, with the right strategies and support, they can succeed in the classroom—and outside of it, too.

This campaign stems from the idea that parents can sense when their children are struggling but may not know why. Or what to do.

By demonstrating the realities that children with learning and attention issues face daily, the campaign aims to increase the number of parents who are actively helping and seeking help for their kids.

Parents are encouraged to visit Understood.org, a comprehensive free online resource that empowers parents through personalized support, daily access to experts and specially designed tools to help the millions of children with learning and attention issues go from simply coping to truly thriving.

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For autistic adults, coverage options are scarce

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Graphic showing an umbrella sheltering medicinesBy Michelle Andrews
KHN / September 19th

It’s getting easier for parents of young children with autism to get insurers to cover a pricey treatment called applied behavioral analysis.

Once kids turn 21, however, it’s a different ballgame entirely. Continue reading

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California to broaden autism coverage for kids through Medicaid

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This KHN story also ran in the .

Maria Cruz had never heard the word autism until her daughter, Shirley, was diagnosed as a toddler.

“I felt a knot in my brain. I didn’t know where to turn,” recalled Cruz, a Mexican immigrant who speaks only Spanish. “I didn’t have any idea how to help her.”

No one in her low-income South Los Angeles neighborhood seemed to know anything about autism spectrum disorder, a developmental condition that can impair language, learning and social interaction.

Starting Monday, Sept. 15, thousands of children in California from low-income families who are on the autism spectrum will be eligible for behavioral therapy under the state’s health plan for the poor.

Years passed as Shirley struggled through school, where she was bullied and beaten up. Now 9, Shirley aces math tests but can barely dress herself, brush her teeth or eat with utensils.

Shirley is like many autistic children from poor families: She hasn’t gotten much outside help. The parents often lack the know-how and means of middle-class families to advocate for their children at schools and state regional centers for the developmentally disabled.

A new initiative seeks to help level the playing field. Starting Monday, Sept. 15, thousands of children from low-income families who are on the autism spectrum will be eligible for behavioral therapy under Medi-Cal, the state’s health plan for the poor. Continue reading

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Federal officials order Medicaid to cover autism services

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Jigsaw puzzle with one piece to add

Photo: Willi Heidelbach

When Yuri Maldonado’s 6-year-old son was diagnosed with autism four years ago, she learned that getting him the therapy he needed from California’s Medicaid plan for low-income children was going to be tough.

Medi-Cal, as California’s plan is called, does provide coverage of autism services for some children who are severely disabled by the disorder, in contrast to many states which offer no autism coverage.

But Maldonado’s son was approved for 30 hours a week of applied behavioral analysis (ABA), a type of behavior modification therapy that has been shown to be effective with autistic children, and she was worried that wasn’t enough.

So she and her husband, neither of whose jobs offered health insurance, bought an individual private policy for their son, with a $900 monthly price tag, to get him more of the comprehensive therapy.

“I don’t know any family that can really afford that,” says Maldonado. “We made some sacrifices.”

That should be changing soon. In July, the Centers for Medicare & Medicaid Services announced that comprehensive autism services must be covered for children under all state Medicaid and Children’s Health Insurance Program plans, another federal-state program that provide health coverage to lower-income children. Continue reading

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Most of the genetic risk for autism due to versions of common genes

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From the National Institutes of Health

Most of the genetic risk for autism comes from versions of genes that are common in the population rather than from rare variants or spontaneous glitches, researchers funded by the

National Institutes of Health have found. Heritability also outweighed other risk factors in this largest study of its kind to date.

About 52 percent of the risk for autism was traced to common and rare inherited variation, with spontaneous mutations contributing a modest 2.6 percent of the total risk.

Gene autism

The bulk of risk, or liability, for autism spectrum disorders (ASD) was traced to inherited variations in the genetic code shared by many people. These and other (unaccounted) factors dwarfed contributions from rare inherited, non-additive and spontaneous (de novo) genetic factors. Source: Population-Based Autism Genetics and Environment Study.

“Although each exerts just a tiny effect individually, these common variations in the genetic code add up to substantial impact, taken together,” Buxbaum said. Continue reading

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Lack of eye contact in early infancy may be sign of autism, study

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From the National Institutes of Health

Eye contact during early infancy may be a key to early identification of autism, according to a study funded by the National Institute of Mental Health (NIMH), part of the National Institutes of Health.

Published this week in the journal Nature, the study reveals the earliest sign of developing autism ever observed — a steady decline in attention to others’ eyes within the first two to six months of life.

“Autism isn’t usually diagnosed until after age 2, when delays in a child’s social behavior and language skills become apparent. This study shows that children exhibit clear signs of autism at a much younger age,” said Thomas R. Insel, M.D., director of NIMH. “The sooner we are able to identify early markers for autism, the more effective our treatment interventions can be.”

autism eye

Decline in eye fixation reveals signs of autism present already within the first 6 months of life. Data from a 6-month-old infant later diagnosed with autism are plotted in red.

Data from a typically developing 6-month-old are plotted in blue. The data show where the infants were looking while watching a video of a caregiver. Source: Warren Jones, Ph.D., Marcus Autism Center, Children’s Healthcare of Atlanta, and Emory University School of Medicine.

Typically developing children begin to focus on human faces within the first few hours of life, and they learn to pick up social cues by paying special attention to other people’s eyes.

Children with autism, however, do not exhibit this sort of interest in eye-looking. In fact, a lack of eye contact is one of the diagnostic features of the disorder.

To find out how this deficit in eye-looking emerges in children with autism, Warren Jones, Ph.D., and Ami Klin, Ph.D., of the Marcus Autism Center, Children’s Healthcare of Atlanta, and Emory University School of Medicine followed infants from birth to age 3.

The infants were divided into two groups, based on their risk for developing an autism spectrum disorder. Those in the high risk group had an older sibling already diagnosed with autism; those in the low risk group did not.

Jones and Klin used eye-tracking equipment to measure each child’s eye movements as they watched video scenes of a caregiver. The researchers calculated the percentage of time each child fixated on the caregiver’s eyes, mouth, and body, as well as the non-human spaces in the images. Children were tested at 10 different times between 2 and 24 months of age.

By age 3, some of the children — nearly all from the high risk group — had received a clinical diagnosis of an autism spectrum disorder. The researchers then reviewed the eye-tracking data to determine what factors differed between those children who received an autism diagnosis and those who did not.

“In infants later diagnosed with autism, we see a steady decline in how much they look at mom’s eyes,” said Jones. This drop in eye-looking began between two and six months and continued throughout the course of the study.

By 24 months, the children later diagnosed with autism focused on the caregiver’s eyes only about half as long as did their typically developing counterparts.

This decline in attention to others’ eyes was somewhat surprising to the researchers. In opposition to a long-standing theory in the field — that social behaviors are entirely absent in children with autism — these results suggest that social engagement skills are intact shortly after birth in children with autism. If clinicians can identify this sort of marker for autism in a young infant, interventions may be better able to keep the child’s social development on track.

“This insight, the preservation of some early eye-looking, is important,” explained Jones. “In the future, if we were able to use similar technologies to identify early signs of social disability, we could then consider interventions to build on that early eye-looking and help reduce some of the associated disabilities that often accompany autism.”

The next step for Jones and Klin is to translate this finding into a viable tool for use in the clinic. With support from the NIH Autism Centers of Excellence program, the research team has already started to extend this research by enrolling many more babies and their families into related long-term studies.

They also plan to examine additional markers for autism in infancy in order to give clinicians more tools for the early identification and treatment of autism.

Grant: R01MH083727

About the National Institute of Mental Health (NIMH): The mission of the NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and care. For more information, visit http://www.nimh.nih.gov.

About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

NIH…Turning Discovery Into Health®

Reference

Jones W, Klin A. Attention to eyes is present but in decline in 2-6-month-old infants later diagnosed with autism. Nature, Nov. 6, 2013.

 

 

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08_09_autism_merged_maps

Health reform law leaves autism coverage decisions to the states

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By Christine Vestal
Stateline Staff Writer

Autism advocates celebrated what they thought was a major victory when President Barack Obama signed the Affordable Care Act in 2010:  They expected the law to require all insurance companies to cover pricey, potentially lifelong treatments for those with the incurable condition.

But instead of creating a national standard for autism coverage, the administration bowed to political pressure from states and insurers and left it to states to define, within certain parameters, the “essential benefits” that insurance companies must provide.

Coverage requirements for autism treatments, such as behavioral counseling and speech and occupational therapy, already vary from state to state.  Far from smoothing out those differences, critics say the ACA will add a new layer of complexity.

The U.S. Department of Health and Human Services (HHS) says it will consider setting a national standard in 2016. Until then, states will decide what autism treatments insurance companies must cover.

08_09_autism_merged_maps

What is autism, how is it treated and at what cost?

Autism is a mental disorder affecting more than 2 million Americans and tens of millions of people worldwide. According to the U.S. Centers for Disease Control, one in every 88 children in the U.S has the condition, and the number is rising. Paying for treatment can be financially catastrophic to families.

Symptoms of autism first appear from birth to early childhood, and include mild to severe social, communication and behavioral challenges as well as repetitive behaviors. Treatments include counseling, speech and physical therapy and medications.

Advocates say applied behavior analysis (ABA), in which a therapist reinforces positive behaviors in the patient, is essential to helping children with autism reach their full potential.

ABA, developed in the 1960s, has become the most widely used autism treatment. But it requires hours of intensive, one-on-one therapy, and costs as much as $60,000 a year.

Depending on the severity of symptoms, a trained therapist using ABA may spend as many as 40 hours a week with a child. A new study by researchers at the University of Pennsylvania and the London School of Economics estimates the cost of treating a person with autism during his or her lifetime is $2.3 million. Autism costs Americans an estimated $126 billion annually, a number that has more than tripled since 2006.

Who opposes broad coverage of autism treatments?

ABA is endorsed by the American Medical Association, the American Academy of Pediatrics, and the U.S. Surgeon General. But insurance companies often object to paying for it because they say it is unproven and is largely educational, not medical.

Consumer advocates led by the Council for Affordable Health Insurance also argue that covering ABA is so costly it causes insurance premiums to rise, making basic health coverage unaffordable for millions of Americans.

What have states done to help ensure coverage of autism therapies?

Starting with Indiana in 2001, a total of 34 states and the District of Columbia have enacted autism insurance mandates, requiring carriers within their borders to provide coverage of ABA and other autism treatments in some or all of their policies.

States require insurers to cover nearly 2,300 categories of illness, treatments, and screenings.  Every state with an autism mandate requires insurers to cover ABA for state employees.

Beyond that, state laws vary widely. Some apply only to individual health policies, while others include small group and large corporate policies.

(No state mandates apply to the self-funded policies large employers typically offer, which is the type of coverage one-quarter of insured Americans have.)

Last year, the federal government began requiring coverage of ABA for the nation’s 8 million federal employees, retirees and their dependents.  Insurance coverage for members of the military also includes ABA treatments, with some restrictions.

Will existing state insurance mandates apply to policies sold on the state insurance exchanges?

Maybe.

The ACA says state insurance mandates in place before Dec. 31, 2011 may apply to policies offered on the exchanges.  If a state requires commercial carriers to cover ABA, that same requirement may be applied to policies sold on its exchange.

However, when the administration directed states to define “essential benefits,” every state either chose a “benchmark plan” (defined as the small business plan in the state with the most beneficiaries) or let the federal government choose a similar plan for them.

If a state’s benchmark plan includes a requirement to cover ABA and other autism treatments, then all the plans on its exchange must do the same.

But in 11 of the 34 states with autism mandates, the benchmark plan does not include autism coverage, according to an analysis by advocates Autism Speaks.

In those states, as well as the 16 states without autism mandates, state officials have the option of adding autism coverage as a required “supplemental” plan.

In Ohio, where the legislature is currently considering an autism bill, Gov. John Kasich, a Republican, mandated autism coverage by executive order in December 2012.

Alaska’s insurance chief, Bret Kolb, wrote to state lawmakers last month confirming that Alaska’s newly-minted autism mandate would apply to policies sold on the federally-run exchange.

How do state mental health parity laws affect autism patients?

According to the National Conference of State Legislatures, every state but Wyoming now has a mental health parity law on the books, requiring that when insurers cover mental illness and/or substance abuse they do so on an equal financial basis with physical illnesses.

A federal law – the Mental Health Parity and Addiction Act of 2008 – also requires equal treatment, but the Obama administration has yet tocomplete the federal rules that would enable states to enforce it.

Parity laws only require carriers to pay as much for mental health treatments as they pay for medical treatments, with the same co-pays, deductibles and coverage limitations.

The laws do not require carriers to cover specific treatments, such as ABA treatments. Still, state parity laws, combined with mandates, will maximize coverage for any given child.

What is “habilitation” and how does it affect autism coverage?

The federal government lists 10 categories of health care services states must include in their essential benefits. Two relate to autism: mental health services and habilitation, which is defined as therapies for children with developmental disabilities.

In accepting state benchmark plans last year, HHS told states they must spell out what services are covered under habilitation.

The way states define habilitation and how that plays out after 2014, when insurance companies begin processing claims, remains to be seen.

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Stateline is a nonpartisan, nonprofit news service of the Pew Center on the States that provides daily reporting and analysis on trends in state policy.

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MRI

Brain changes linked autism start early in life — UW study

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Changes in the brains of children at high-risk for developing autism who later go on to develop the condition can be detected as early as six months of age, long before any signs of autistic behavior appear, according to a new study by University of Washington researchers.

The changes, detected in white matter of the infants’  brains, were widespread and would likely have a profound effect on brain development, said Annette Estes, PhD, research associate professor of speech and hearing sciences at the UW and a co-author of the study.

The findings also suggest that autism does not develop suddenly but involves a long process that begins early in life, Estes said.

A tensor diffusion MR image showing the white matter tracts of the brain

A tensor diffusion image showing the white matter tracts of the brain

Individuals with autism typically have difficulty with social interaction, interpersonal communication and may engage in repetitive behaviors. Symptoms can range from mild to severely disabling.

The U.S. Centers for Disease Control and Prevention estimates that 1 in 110 U.S. children is affected by the disorder. The condition is usually detected in the second year of life after a seemingly normal infancy.

Although the cause of autism is unknown, recent research suggests that abnormalities in the brain’s white matter are involved.

White matter: the brain’s wiring

White matter is made up of bundles of millions of nerve fibers that create the “wiring” through which nerve cells communicate with each other. These nerve fibers are sheathed in a fatty insulating material, called myelin, that gives these areas of the brain a whitish appearance.

It is thought that abnormalities in white matter not only disrupt communication within the brain but also impair normal brain development, Estes said.

In the study, the UW researchers, working with collaborators from across the country, studied the brains 92 infants with a technique called diffusion tensor imaging that allowed them to track the development of the infants’ white matter,

The infants all came from families that already had one child with autism, which meant the infants were at high-risk of developing the condition as well.

Each infant had diffusion tensor imaging study at six months followed by a behavioral assessment at the age of two. Most also had follow-up scans at at one and two years of age.

The  researchers found that at the age of two, 28, or 30 percent, of the children had symptoms of autism while 64, or 70 percent, did not.

Comparing the brain imaging studies of the two groups revealed significant differences in the development of 12 of the brain’s 15 major white matter tracts.

That so many white matter tracks are involved suggests that at this stage autism is a “a whole-brain phenomenon not isolated to any particular brain region at this early stage of development,” said said Dr. Stephen R. Dager, M.D., UW professor of radiology and principal investigator of the University of Washington team.

The study’s findings are preliminary and diffusion tensor imaging is not ready to be used to diagnose autism in infants, Estes said, but the technique should help researchers better understand the cause of the condition and hopefully develop better interventions.

Autism and childrearing

In the past, it was commonly held that autism was the result of the failure on the part of parents to be sufficiently nurturing to their infants,  but the findings of this study suggest autism involves abnormal brain development that begins very early in life, Estes said.

Many parents wrongly blame themselves when their child develops autism, Estes said, but these findings indicate they “did nothing wrong” to cause the condition.

Future research will include looking at changes in the white matter development in infants younger than six months of age and tracking those changes as children age, Estes said.

The study, published online by the American Journal of Psychiatry, was the result of a collaboration with the Infant Brain Imaging Study (IBIS) Network funded by the National Institutes of Health and headquartered at the University of North Carolina at Chapel Hill.

Dr. Joseph Piven, professor of psychiatry at University of North Carolina at Chapel Hill and director of UNC’s Carolina Institute for Developmental Disabilities, was the senior author of the study.

Other institutions that took part in the study include the University of Utah, Washington University in St. Louis, McGill University, Children’s Hospital of Philadelphia and the University of Alberta.

To learn more:

  • UW Autism Center’s IBIS page.
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Noted autism spokesperson and animal behaviorist to speak at UW.

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Temple Grandin, autism spokesperson and animal behaviorist, to speak at the University Washington, Wednesday, Nov. 30th.

Temple Grandin, who was diagnosed with autism as a child but went on to obtain a Ph.D. in animal science, is noted for her work exploring the similarities between autistic consciousness and the thought processes of animals — research that has led to improvements in livestock handling to reduce animal stress.

Grandin’s research on pictorial thinking shared by animals and autistics alike has resulted in more than 400 scientific and lay publications, 6 books, and numerous awards.

In 2010, TIME Magazine listed Grandin as one of the 100 Most Influential People in the World.

Topic:

Improving Animal Welfare

When:

Wednesday, November 30, 2011

4:00 – 5:45 PM

Where

Hogness Auditorium (A-420), Health Sciences Center, UW

Event is free and open to the public. A personal book signing will follow the lecture.

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Health and medicine on the Web: This week’s top picks

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Every week, KHN reporter Jessica Marcy selects interesting reads from around the Web.

Time: Study: Autistic Children Have More Brain Cells

PET scan by Jens Langner

There’s growing evidence that the brains of autistic children are very different from the brains of other youngsters.

Now a new study that found an excess of brain cells in children with autism comes closer to pinpointing the origins of the condition: in utero versus in toddlerhood.

In research reported in the Journal of the American Medical Association (JAMA), scientists at the University of California, San Diego, found that autistic children have about 67% more nerve cells in a part of the brain known as the prefrontal cortex than children without autism.

The prefrontal cortex is involved in processing social skills, communication, cognitive functions and language — all areas in which autistic children often show abnormal development (Alice Park, 11/9).

The Atlantic: A Conservative Icon Upholds The Affordable Health Care Act

U.S. Supreme Court

Photo: Franz Jantzen

Just in time for Thursday’s Supreme Court conference, the Affordable Care Act … was upheld Tuesday in an opinion by one of America’s most feared conservative judges — Judge Laurence Silberman of the District of Columbia Court of Appeals, a jurist so gruff he is rumored to make some lawyers cry just by agreeing with them.

Silberman is also a conservative icon — Ronald Reagan appointee, friend and sometime mentor to Clarence Thomas, co-chair of the Iraq Intelligence Committee, winner of the Presidential Medal of Freedom, Second Amendment hard-liner. … the opinion removes one reason why the Supreme Court might have wanted to delay responding to the government’s petition for review of Eleventh Circuit’s decision striking down the act.

But the D.C. Circuit’s decision reminds us that, if a majority of this conservative Court does decide to scuttle the ACA, it will almost certainly have to scuttle or vitiate that century of precedent — the legal basis upon which regulation of the national economy depends (Garrett Epps, 11/9).

Mother Jones: Why Mississippi’s Personhood Measure Failed

Mississippi voters overwhelmingly rejected a ballot measure that would have granted full rights to a fertilized egg on Tuesday, with 58 percent of the state voting against the amendment.

Activists on both sides of the battle were watching the state as a test case for other state-level initiatives that would outlaw all forms of abortion. Perhaps it’s worth looking, then, at why it didn’t pass in one of the most conservative states in the country.

The primary reason for the measure’s failure was overreach. In recent weeks, opponents of the measure made the case to the public that it wasn’t really just about abortion, but could also have far-reaching impacts on birth control, in vitro fertilization, and a doctor’s ability to provide care for pregnant women (Kate Sheppard, 11/9).

American Medical News: Jumping To A Nonclinical Career

For all kinds of reasons, some new — like opportunities in the health information technology industry — and some old — like burnout — occasionally physicians decide to leave clinical practice.

But how can doctors tell the difference between needing a vacation from clinical work or a permanent break from it? And how do those who don’t have a plan B identify a fulfilling second career? Career coaches and former physicians, who are sometimes one and the same, say there is no limit to the new careers physicians can take on.

But they also advise careful planning before making the leap. The transition to a new career isn’t always quick (Emily Berry, 11/7).

The Atlantic: Do Nonprofit Hospitals Make Too Much Money?

Sign for an emergency room.For years, nonprofit hospitals have shied away from quantifying the amount of charitable care they provide communities. Hospital officials argue that it’s almost impossible to put a dollar value on charity and that doing so would take valuable time and resources away from actually serving the needy.The charity question is significant because nonprofit hospitals get major tax breaks. Also, because of loopholes in state laws, nonprofit hospitals are often permitted to make huge profits. …

Recent economic downturns, however, have shined a detective’s spotlight on the amount of charity care hospitals provide. … The thinking goes: if nonprofit hospitals are making money and unwilling to prove how much charity care they provide, why do they deserve nonprofit tax breaks?  (Matt Stroud, 11/9).

 

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

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Webwatch: Best of the week’s articles on health online

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By Jessica Marcy

Every week, reporter Jessica Marcy selects interesting reading from around the Web.

Marie Claire: The Big Business Of Breast Cancer

Though breast cancer researchers and advocates perpetually plead for more money, the disease is, in fact, awash in it. Last year, the National Institutes of Health, the nation’s top agency for health-related research, allocated $763 million to the study of breast cancer, more than double what it committed to any other cancer. … All that is in addition to the money raised by the roughly 1,400 IRS-recognized, tax-exempt charities in this country devoted to breast cancer. … All told, an estimated $6 billion is raised every year in the name of breast cancer. … Which seems like great news for the fight against breast cancer … But it’s also been a boon for charity scammers — the charlatans who prey on the public’s beneficence and its inveterate laziness when it comes to due diligence (Lea Goldman, 9/14).

Columbia Journalism Review: Deep Health Care Problems Under Rick Perry’s Watch

200px-Flag-map_of_TexasWith the media hyper-focused on Texas governor Rick Perry’s not-too-flattering comments about Social Security, health care in his state seems like a woeful orphan in Medialand. That’s why Noam Levey deserves a shout-out for his recent Los Angeles Times story dissecting what’s really happening in Texas when it comes to caring for the sick. … His nut graph: In the 11 years the Republican presidential hopeful has been in office, working Texans increasingly have been priced out of private healthcare while the state’s safety net has withered, leaving millions of state residents without medical care. … More than one-quarter of all Texans lack health insurance (Trudy Lieberman, 9/14).

The New York Times: Autistic And Seeking A Place In An Adult World

Jigsaw puzzle with one piece to add

Photo: Willi Heidelbach

People with autism, whose unusual behaviors are believed to stem from variations in early brain development, typically disappear from public view after they leave school. As few as one in 10 hold even part-time jobs. Some live in state-supported group homes; even those who attend college often end up unemployed and isolated, living with parents. But Justin (Canha) is among the first generation of autistic youths who have benefited throughout childhood from more effective therapies and hard-won educational opportunities. And Ms. (Kate) Stanton-Paule’s program here is based on the somewhat radical premise that with intensive coaching in the workplace and community — and some stretching by others to include them — students like Justin can achieve a level of lifelong independence that has eluded their predecessors (Amy Harmon, 9/17).

The Atlantic: We’re Living Longer Than Ever Before, But Are We Healthier

People often turn to the increasing life expectancy of our population and assume that if that number increases, we must be getting healthier because we are living longer. But that is a bit of statistical deception. … We are certainly safer than we were in the past, but are we healthier? Are our bodies operating effortlessly in a zone of homeostasis; or are we clawing on the brink like Gollum with our attention inappropriately fixated on some elusive ring — brass, golden, or otherwise? The French doctor and gourmand Anthelme Brillat-Savarin had noted almost two centuries earlier (in) his book Physiology of Taste, or Meditations on Transcendental Gastronomy, “Tell me what you eat and I shall tell you what you are” (Mike Fenster, 9/21).

The Weekly Standard: The Medicare Monster

It is gradually dawning on Washington that a meaningful reform of the Medicare program will be unavoidable in the coming years. Medicare is at the center of both our health care dilemma and our fiscal crunch, and it will be very difficult to avoid a calamitous debt crisis without making changes to the program’s basic structure. … The need for Medicare reform has never been more urgent, or more clear. We simply cannot avert a debt crisis without it. But the case can be made most easily and effectively if it is made in the service of a politically palatable reform idea focused on innovation rather than austerity. Years of work by conservative health care experts have produced such an idea. All we need now is a conservative presidential candidate who can see beyond the political peril of Medicare politics to the political promise of offering the country a solution to its mounting woes that is both appealing and achievable (Yuval Levin, 9/26 edition).

American Medical News: Miracle Vs. Medicine: When Faith Puts Care At Risk

In doctors’ offices across the country, physicians confront similar struggles with families who choose religious beliefs over medical advice. … These tensions have spilled into the courts, where criminal cases have pitted faith healing against medical intervention. Recent rulings show that the legal system is taking medical-based neglect more seriously than before. … Such cases have prompted lawmakers, doctors and anti-abuse advocates to seek changes in laws that provide religious protections for parents. At least 30 states allow some form of religious immunity for parents when children are harmed because of a lack of medical care (Alicia Gallegos, 9/19).


This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

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Jigsaw puzzle with one piece to add

Parents fear health reform law could derail autism coverage

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By Phil Galewitz
KHN Staff Writer

Jigsaw puzzle with one piece to add

Photo: Willi Heidelbach

Autism treatment advocates have won one legislative battle after another since 2007, most recently in California, which sent a bill to the governor this month mandating that insurers cover the disorder.

Now more than half the states have such requirements, but that success could be in jeopardy as federal officials set new national standards for health coverage.

Insurers and employers argue that the laws increase health costs because treatment is often expensive and lasts years.

But the advocates have prevailed by using federal data showing a growing number of children with the disorder, compelling stories about middle-class families struggling to afford treatment and testimony from celebrity parents of children with autism, including former pro football stars Dan Marino and Doug Flutie.

However, a provision in the 2010 health overhaul law gives the federal government authority to define “benefits” that will be offered on the health insurance exchanges, or marketplaces, to individuals and small businesses starting in 2014.

If states mandate a benefit, but it isn’t on the federal list, the states would be responsible for the cost of the coverage.

As a result, autism benefits and dozens of other state-required benefits, covering services and conditions such as infertility, acupuncture and chiropractic care, could be at risk.

By the end of September, the Institute of Medicine is scheduled to recommend criteria the Department of Health and Human Services should use in determining the essential benefits package. HHS is expected to announce its decision by the end of the year.

“We do think states will be under enormous pressure to repeal benefits” not deemed essential, said Stephen Finan, senior director of policy for the American Cancer Society’s Cancer Action Network. The society is concerned that the benefits package will not include all the cancer screenings that it has recommended.

“It will be a new day,” said Amanda Austin, a lobbyist for the National Federation of Independent Business, which typically fights new insurance mandates because the costs will lead to higher premiums.

HHS faces a difficult balancing act: The more comprehensive the benefits package, the more it would cost insurers and their customers. Taxpayers would pay more, too, because the law provides government subsidies to help millions of people afford coverage.

Tens Of Thousands Of Dollars In Services

Most of the state laws covering autism require insurers to pay for behavioral analysis as well as physical and occupational therapy. These services can cost tens of thousands of dollars a year, although many states put dollar limits on coverage.

Autism encompasses many disorders ranging from mild to severe that can affect a child’s behavior and ability to communicate.

Applied behavioral analysis typically involves one-on-one counseling to teach children how to behave or act in different situations. Although parents and many clinicians consider it the most effective therapy for children with autism, the results are mixed in peer-reviewed research.

Insurers typically oppose state benefit mandates, saying they reduce their ability to control costs. In addition, they argue that autism is a development disorder that is best addressed by the educational system, not the medical system.

Parents worry the essential-benefits provision could reopen the debate over covering treatment for autism and spark another showdown with insurers.

“Fear runs through my mind,” said Ann Rounseville of Newton, Mass., whose son Luke, 4, has been able to get speech, occupational and behavioral therapy because of the insurance benefit that started this year.

“Without this coverage he would not be getting any of the extra therapy he needs,” said Rounseville, estimating the Massachusetts law has saved her family more than $10,000 since May.

Stuart Spielman, a lobbyist for Autism Speaks, the New York-based group that has led the push for coverage laws, said he’s confident HHS will include autism because the federal law lists behavioral health treatment in its broad outline of what should be considered essential. The law also spells out the need for emergency services, hospitalization, maternity care, prescription drugs and prevention.

It’s unclear how HHS will decide what to deem an essential benefit. The agency could declare a broad list of categories of treatments and services essential and leave the specifics to the states.

At the state level, autism treatment advocates have argued that the problem is too big – and too expensive for families – not to be covered by insurers. They also say providing treatment to young children can save money in the long run by reducing the later need for institutionalized care.

The state mandate laws typically only affect about half of people with health coverage because they do not apply to self-insured employers, typically large companies.

1 In 110 Children Affected

According to the federal Centers for Disease Control and Prevention, 1 in 110 American children have been diagnosed with Autism Spectrum Disorder, including 1 in 70 boys.

A Harvard University study in 2006 found that on average the annual care for a person with autism runs about $29,000 for medical costs and $38,000 for non-medical costs such as special education, camps and child care.

“The mandates have been a way for states to be doing something on a major issue without money coming out of the state treasury,” said Jack Pitney, professor of American politics at Claremont McKenna College in California. “It’s a cost borne by insurance companies who are not an object of a great deal of public affection.”

Insurers argue that the cost of autism coverage gets passed on to all their customers through higher premiums. The Council for Affordable Health Insurance, an insurer-backed group, estimates  that autism mandates boost premiums from 1 percent to 3 percent.

Highmark, Pennsylvania’s largest private health insurer, says the autism mandate enacted in the state in 2009 increased premiums from 0.6 to 1 percent. Overall, the cost of employer-paid insurance for family coverage last year was $13,770, according to a Kaiser Family Foundation study. (Kaiser Health News is an editorially independent part of the foundation.)

Autism advocates point to lower estimates. They say data from the agency overseeing health benefits for South Carolina state employees shows that autism coverage added just 44 cents per member per month.

Richard Cauchi, program director of the health program of the National Conference of State Legislatures, said HHS has not yet said how it will determine the cost to states of keeping certain mandates. States may be required to pay the insurer or the enrollee.

Cauchi was surprised 16 states approved a variety of new mandates in 2011 given the uncertainty about future costs. Four of the states imposed autism benefits: Arkansas, Rhode Island, Virginia and West Virginia.

Until 2007, only Indiana required insurers to cover autism treatment. Today, 26 states do, not including California, where Gov. Jerry Brown (D) has not yet said if he will sign the bill, and New York, where a bill awaits the signature of Gov. Andrew Cuomo (D).

Autism advocates and other patient groups continue to press for more benefits laws. By 2014, Cauchi said, “There could certainly be a number of mismatches between what’s considered essential and what states have on their books.”

Wilson Cristancho of Miami hopes the autism treatment Florida requires remains part of his insurance. Before the law took effect in 2009, he said he piled up nearly $30,000 in debt for his son’s medical bills. The intensive therapy now paid for by his insurer has helped his son, Marc Anthony, 9, communicate and improve his hand-eye coordination.

“The mandate has had a huge impact on me and my family,” Cristancho said. “We don’t want to see it go away.”

PHOTO: Willi Heidelbach

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

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Funds going to look into autism-vaccine link wasted, says new autism advocacy group

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child's abc blocksIt’s time to stop spending money looking for a link between vaccines and autism, says a co-founder of a new autism advocacy group called the Autism Science Foundation.

Many parents remain unnecessarily concerned that vaccines cause autism despite the results of a large number of studies that have found no evidence of such a link, said Alison Singer, president of the new group.

Singer had been an executive vice president of Autism Speaks, one of the largest autism advocacy organizations, but resigned in January after the group decided it would continue to fund research looking at possible links between vaccines and autism.

Singer said that after she resigned she was “inundated with calls and emails” from parents who did not want their donations to be spent on more vaccine-related research.

“We started the Autism Science Foundation because parents are really tired of the autism story being hijacked by the misconception that vaccines cause autism,” Singer said. Continue reading

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Autism’s False Prophets – Book Review

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autisms-false-prophetsDr. Paul Offit is a chief of Infectious Diseases at Children’s Hospital of Philadelphia and a vaccine researcher.

He is also an outspoken critic of those who say vaccines cause autism.

As a result, he has been called, among other things, a prostitute for the pharmaceutical companies and has received threats against his own life and that of his children.

Every week he gets hate mail.

In his powerful and absorbing book Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure, Dr. Offit examines the the theories of those who hold that vaccines cause autism as well as the claims of others who have held out false hopes of unproven autism cures.

Parents of children with autism are understandably impatient with mainstream medicine, which has failed to identify a cause or offer a cure, Dr. Offit notes.

“Many parents of children with autism are tired of the glacial pace of medical research,” he writes, “and tired of slogging through hours of behavioral therapy, and tired of watching children improve at rates so slow it’s hard to tell if they are improving at all.”

It is no wonder parents grasp at hope when it is offered.

One of the first to offer such a hope was Bruno Bettelheim, a Viennese-born psychoanalyst who blamed autism on cold and unfeeling parents, in particular, the mothers of autistic children.

Bettelheim said he could cure children of autism by replacing their mothers’ “black milk” with a nurturing, supportive environment.

His claims soon caught the media’s attention. He was invited on such national programs as The Dick Cavett Show and The Today Show. Eventually, however, his ideas and treatment approach were discredited.

That such a bizarre theory that so cruelly shamed parents was given credence shows how desperate parents, and how credulous the media, can be.

But parents are not the only people who are vulnerable to the promise of a cure or at least a treatment, Offit shows; therapists, teachers and health-care providers are vulnerable as well.

Offit describes how, in the 1990s, a professor of special education began to promote an autism treatment called “facilitated communication”.

The theory on its face is strange. It held that autistic children were uncommunicative because they were not able to master the motor activity required for speech.

This disability could be overcome, the theory held, with facilitated communication in which an adult “facilitator”, by providing “counterweight”, helped guide the autistic child’s hands to letters on a keyboard so the child could communicate what they were thinking.

“The results were amazing,” Offit writes. “With the help of facilitators, children with autism typed out messages that filled their parents with hope.”

“I am trapped in a cage and I want to get out”, one wrote.

“I am intelligent and educated,” wrote another.

“Autism held me hostage for seventeen years but not any more because now I can talk.:

An institute was formed, and thousands of parents, teachers, therapists and healthcare providers were trained in the technique. “By 1993, hundreds of schools and centers for disabled children had adopted facilitated communication,” Offit writes.

But there were skeptics. How was it that children who in other tests had been found to be severely retarded were now able to write sophisticated poetry, essays, and engage in philosophical discussions? And how was it that they could type long paragraphs free of spelling errors?

So someone did a simple experiment. In the experiment, the child and facilitor would be shown a picture and they would then work together to type out the name of the object of the picture, standard facilitated communication.

The trick was that the facilitator and the child could not see the image the other was viewing.

What the researchers found was that when, for example, both the child and the facilitator were shown the picture of a key, the child would type out the word key.

But when the child was shown the picture of a cup and the facilitator was shown a picture of a hat, the child typed out the word hat.

“Clearly, the facilitator was subconsciously doing the typing,” writes Offit.

Yet, despite the evidence, many parents and practitioners continue believe in “the miracle of facilitated communications”, writes Offit.

Offit goes on to describe other theories that continue to have staunch advocates despite scientific evidence that theories are not true.

Perhaps, the most fervent of these advocates are those who blame vaccines for autism despite the fact that repeated studies conducted in the U.S. and abroad have failed to find a link.

These anti-vaccine activists not only do nothing to help those with autism, Dr. Offit argues, but they put children in danger by discouraging vaccinations that prevent dangerous infectious diseases.

Dr. Offit’s accounts of how the anti-vaccine ideas gain currency, passionate support, and media attention, and how they then come unravelled when subject to scientific scrutiny is fascinating journalism.

Autism’s False Prophets is a thoughtful, passionate book that anyone who is interested in autism or the autism debate should read.

Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure
Paul A. Offit, M.D.
September, 2008 
Cloth, 328 pages, 12 illus.
ISBN: 978-0-231-14636-4
$24.95 / £14.95

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