Thursday, May 31, 2012

Bankruptcy and ASD

What does bankruptcy have to do with autism spectrum disorder? As we have seen, the demands of autism parenting may cut into family income and the costs of therapy are high. Last month, CNN reported: :`The burden on families affected by autism is enormous,' said Mark Roithmayr, president of Autism Speaks. `Immediately parents are faced with bills that are not being covered so they turn to second mortgages or home equity lines of credit, then they turn to credit cards and other family members and at that point they are out of options.'"

But what of adults with autism?  They often have a hard time finding and keeping a job, so they may have to file bankruptcy themselves.  The Baltimore Sun reports:
A Baltimore County woman had about $340,000 in student loan debt discharged by a federal bankruptcy judge this month because Asperger's syndrome prevents her from holding a job.
Carol Todd of Nottingham pursued college degrees "as a stepping stone toward a measure of liberation … and perhaps to help her achieve something closer to a normal life," according to the May 17 opinion of Judge Robert A. Gordon, a bankruptcy judge for the District of Maryland. Asperger's is an autism-spectrum disorder that is typified by problems with social interaction.

But the debt Todd racked up ended up complicating her life, Gordon said. He took a rare judicial step by deciding that the loans Todd took on were an "undue hardship."

"It's very difficult to discharge a student loan," said Lawrence D. Coppel, a Baltimore attorney and founder of Maryland's Bankruptcy Bar Association.
"The courts have applied a very strict standard to that exception," said Coppel. "Most of the decisions that are published deny the discharge and refuse to find a hardship exception, even in cases where there's clearly hardship — so the decision by Judge Gordon … is unique."
Todd, who was 63 at the time of her student loan discharge trial in Nov. 2010, received a GED at 39 and began pursuing higher education.

Wednesday, May 30, 2012

Autism Speaks Surveys Federal Action and Inaction

Almost two months have passed since the Centers for Disease Control and Prevention (CDC) released the shocking results of its latest prevalence study—1 in 88 American children, 1 in 54 boys, now has an autism diagnosis. This news was accompanied by the release of an Autism Speaks/Goldman Sachs study, which estimates the annual cost of autism in the U.S. has soared to $137 billion, a burden borne in large part by families. These statistics confirm what we have known for some time: AUTISM IS A PUBLIC HEALTH EMERGENCY THAT DEMANDS URGENT ACTION. We need a national plan to meet the challenge. We need a coordinated, strategic approach, among all federal agencies and the administration, to ensure that funding and research for autism is adequate, focused and effective.

These developments mark a reversal in positive momentum since last September when President Obama signed the Combating Autism Reauthorization Act (CARA), which extended the federal investment in autism at current levels over the ensuing three years. As part of CARA, the Interagency Autism Coordinating Committee (IACC), which steers federal autism research, was to be reconstituted. The new IACC not only has yet to meet, its first meeting won’t be held until July 10th – a full nine months after CARA became law. That’s exactly 25% of the way through the three year authorization period. In the midst of the autism epidemic, this is an unconscionable situation. Where’s the urgency?
Unfortunately, a coordinated, strategic approach to autism has yet to materialize. A $21.3 million annual appropriation authorized under CARA for the CDC to continue tracking autism prevalence, to research the multiple causes of autism and to promote early detection is now in jeopardy as a result of the current federal budget process. The White House broke with established procedure by placing the appropriation within the politically sensitive Affordable Care Act in President Obama’s proposed budget for fiscal year 2013. The appropriation is now in danger of failing due to politics, rather than any debate over its merits. There was no reason to inject the CDC funding into a political debate that has nothing to do with autism. There is no room for politics in autism. 
Our concerns don’t stop there. In structuring the Affordable Care Act of 2010, Congress made it very clear that behavioral health treatments, including applied behavior analysis for autism, must be a part of the Essential Health Benefits package. Every health plan offered through the state exchange system is required to include these benefits by 2014. The Department of Health and Human Services (HHS), which is charged with implementing the law, needs to urge policymakers at all levels of the government to abide by the intent of the Congress. Senator Robert Menendez of New Jersey, who had the language inserted in the version of the bill that became law, along with Representative Mike Doyle, other members of Congress, and Autism Speaks, have pressed the Obama administration on this oversight, but our shared concerns have yet to be addressed.
As these concerns from the autism community mount, we have watched the White House roll out a bold new plan for fighting Alzheimer’s that is commendable both in spirit and in purpose. The “National Plan for Addressing Alzheimer’s Disease” was launched in early 2011 and has already resulted in a large infusion of additional funding ($150 million) to support research, provider education and public awareness. Last week, HHS Secretary Kathleen Sebelius announced even more actions including the funding of two major clinical trials, the development of new training for clinicians, and a new public education campaign and website to help families and caregivers find the services and support they need. We commend the administration for taking these bold steps to fight a medical condition that severely impacts millions of Americans during the final years of their lives. Those affected by autism need and deserve a similar focused and committed strategy from the federal government.
On matters of policy and funding, Autism Speaks and the autism community have succeeded when we’ve made our voices heard. Our active and growing grassroots base of advocates has been there when we issued the call to rally. We will continue to press our case with the Obama administration and members of Congress as events unfold this year. We ask that you join with us in this important effort. You can help by following our messages, staying informed by visiting our Autism Votes website, signing up to receive updates and continuing to respond when there is a need to take action. As always, we thank you for your unwavering support in advocating for the autism community.

Autism Speaks and Federal Employees Health Benefits

Autism Speaks hailed today’s announcement by the federal government, the nation’s largest employer, that Applied Behavior Analysis (ABA), the most widely used behavioral intervention used to treat autism, is a “medical” therapy that qualifies for health insurance coverage, rather than an “educational” service.
The decision by the U.S. Office of Personnel Management (OPM) involves health insurance coverage provided to the nation’s eight million federal employees, retirees, and dependents, under the Federal Employees Health Benefits (FEHB) Program. It could have even more far-reaching implications on the health insurance benefits provided all Americans living with autism, as it will be much harder for insurance companies to continue denying coverage for ABA treatment.
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“The OPM decision directly contradicts a long-standing insurance industry claim that ABA therapy is not ‘medical,’ but rather ‘educational’ - provided by the schools at taxpayer expense,” said Peter Bell, Autism Speaks executive vice president for programs and services. “Now, tens of thousands of families will have better access to more affordable, critical ABA treatment.”

The decision was rendered in the form of guidance to insurers who participate in the FEHB Program for policies that will be renewed or issued starting in 2013. The OPM decision does not require the insurers to cover ABA, but rather allows them to offer the coverage as it does many other medical treatments. The guidance reads: “The OPM Benefit Review Panel recently evaluated the status of Applied Behavior Analysis (ABA) for children with autism. Previously, ABA was considered to be an educational intervention and not covered under the FEHB Program. The Panel concluded that there is now sufficient evidence to categorize ABA as medical therapy. Accordingly, plans may propose benefit packages which include ABA.”
Autism Speaks has fought to provide families insurance coverage for ABA therapy through state-regulated plans, self-funded group plans that are regulated under federal law, the FEHB Program, and TRICARE for military families. In each instance, opposition to covering ABA treatment has been based in large part on the claim that ABA is educational, rather than medical. 

Tuesday, May 29, 2012

Young Marines


Cross-posted from Bessette Pitney Text:

Daniel de Vise writes at The Washington Post:
Bob Nobles and Cornell Wright might not have a chance to serve their country when they are adults. No matter: They are serving it now.
“Good morning, Young Marines,” barked 1st Sgt. Vivian Price-Butler, greeting Bob and Cornell and eight other boys Friday morning in her small classroom at Kennedy Krieger High School.

“Good morning, First Sergeant,” they replied in unison, standing straight and still.
The Young Marines is an education and service program reaching 10,000 youths around the nation and overseas. Of its more than 300 units, only one is dedicated to students with special needs.
Founded in 1993, the Kennedy Krieger program serves 24 students at a high school for children who cannot be accommodated in traditional schools. Bob, a 16-year-old sophomore from New Windsor, has autism. Cornell, a 17-year-old junior from Glendale, has an intellectual disability. Other students have cerebral palsy, Down syndrome or brain injuries.
Price-Butler, known affectionately as First Sergeant around the Baltimore school, is not a trained teacher. Yet, 10 or 20 years from now, she is the Kennedy Krieger educator most likely to be getting e-mails and baby pictures from Bob and Cornell and the other Young Marines.

Birch Family Services

Melanie Grayce West writes at The Wall Street Journal:
Over the last decade, there's been a general increase in awareness of the need to provide tailored services, support and education to children with autism and other developmental disabilities. But there's been less talk about the needs of those children when they reach adulthood.

In short, what do families do to help their adult children to maximize their quality of life and independence?

It is a question that Richard E. Farley, a partner in the leveraged finance group of the law firm of Paul Hastings LLP in New York, has been working on with fellow board members of Birch Family Services, a 35-year-old New York-based organization that serves children with disabilities and their families.

"The most important initiative right now is addressing the pending tsunami of the adult-aged population of people with autism-spectrum disorders," explains Mr. Farley. "Once you reach adulthood, you're telling families, 'You're on your own.'"

To that end, the organization is developing programs for what will be, in years to come, a vastly underserved community of people with autism-spectrum disorders, which run the gamut in the seriousness of the symptoms. A percentage of that population, says Mr. Farley, can be self-sufficient in the work force, provided that there is specialized training and a support system. For example, some people who have autism spectrum disorders or other development disabilities could find success in doing administrative work or even working for a specialized office-cleaning company, he says.

Monday, May 28, 2012

Illinois, Insurance, and DSM-5


The Illinois Senate and House of Representatives gave final approval to a bill amending the state's 2008 autism insurance reform law by assuring that any individual already diagnosed with an autism spectrum disorder would not lose benefits as a result of any changes adopted in the upcoming 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).
Sponsored by Senate President John Cullerton (D-Chicago), the bill was in response to concerns that a large percentage of individuals, particularly those who are higher functioning or have Asperger syndrome, would be excluded from an autism diagnosis and thus lose benefits when the DSM-5 is published next year.
The bill, S-679, specifies that any individual with an autism diagnosis would remain eligible for coverage under the 2008 autism insurance law "even if subsequent changes to the diagnostic criteria are adopted by the American Psychiatric Association." The bill goes to Governor Pat Quinn.

Sunday, May 27, 2012

Background on the Caring for Military Kids with Autism Act

AP reports on the Caring for Military Kids with Autism Act:
Sgt. Maj. William Kenyon of Manchester is an active-duty veteran of Desert Storm — the early-1990s conflict in Iraq — as well as two tours in Afghanistan. His wife, Rachel, is fighting within the military for better autism coverage through the armed forces' health insurance program, TRICARE.
"Having served 25 years in the infantry so far, he has seen it all, been there and done that, but when autism came knocking on our door, no uniform, no arsenal, no commendation medals could have prepared us for the fight ahead," Rachel Kenyon said of her husband. "Not a fight against autism, but a fight to secure the medical treatments our daughter with autism needed."
Rachel Kenyon brought the issue to the attention of U.S. Rep. John B. Larson, D-1st District, who then sponsored legislation to expand autism services for active and retired members of the military and the family members covered by their insurance. The legislation is part of a military spending bill for fiscal year 2013 that passed the U.S. House and now faces the Senate as Congress takes on broader issues of how much to spend on defense and setting the nation's budget during a presidential election year.
...

Applied behavior analysis is covered by TRICARE's Extended Care Health Options (ECHO) up to a total of $36,000 a year for a military family. The portion a family has to pay ranges from $25 to $250 per month, with low-ranking enlisted members paying less and high-ranking officers paying the most.
The $36,000 limit doesn't include the amount TRICARE will pay for home health care, too.
The trouble is, $36,000 pays for an average 11 hours weekly of applied behavior analysis for a child with autism when the American Academy of Pediatrics and the National Academy of Sciences recommends 25 to 40 hours of treatment, Rachel Kenyon said.
Also, the services aren't covered for military retirees, including those who are forced into retirement because they were injured in war, Kenyon said.
"I was certainly aware of autism . . . but I was unaware of the enormous gap that existed in our TRICARE system," Larson said.
WTNH in Hartford reports:


Saturday, May 26, 2012

ASD Students, ASD Teacher

WBBH-TV in Fort Myers, Florida, reports on an ASD teacher of ASD students:
The need is growing in Lee County schools for Autism-related classrooms and teachers. Next year the school district is adding four new programs for exceptional education services at Heights Elementary, Tortuga Preserve Elementary, Harns Marsh Middle, and Challenger Middle. Pre-Kindergarten teacher at Veterans Park Academy for the Arts in Lehigh Acres, 33-year-old Harold Price, did not have those types of services growing up. Now, he teaches kids with developmental disorders and Autism Spectrum Disorder. "They just learn differently, they may need a couple extra seconds," Price said. 
Price has Asperger's Syndrome.

Friday, May 25, 2012

Ranking State Medicaid Programs

While progress has been made and there is more quality assurance of services provided, some states are failing to adequately serve Americans with intellectual and developmental disabilities (ID/DD), according to The Case for Inclusion 2012, a new Medicaid report released today.
United Cerebral Palsy (UCP) and the American Association of People with Disabilities (AAPD) are calling on advocates to use The Case for Inclusion as a tool to determine how to build state support and service systems that work for people. The findings for 2012 reveal that:
While progress has been made, there is room for improvement: 36 states can now show that 80% of the individuals with ID/DD in their states are served in the community;

States are becoming more involved in ensuring the quality of the services they provide: 29 states have established a comprehensive quality assurance program to measure the outcomes of the community services they deliver;

But there is still more to do, particularly in providing services: waiting lists for critical community services continue to climb with more than a quarter of a million, or 268,000, people with ID/DD.

The 2012 report tracks the progress of community living standards, and it shows that the states with the best services and supports for Americans living with disabilities are Arizona, Michigan and California. The lowest performing states are Arkansas, Texas and Mississippi, which have remained at the bottom of the rankings since The Case for Inclusion was first published in 2006.

Thursday, May 24, 2012

Important New Data

A data brief from the National Center for Health Statistics offers some important new information:

The median age when school-aged children with special health care needs (CSHCN) and autism spectrum disorder (ASD) were first identified as having ASD was 5 years.[Note: other studies have reached different conclusions.]

Percent distribution of child's age when parent or guardian was first told that child had
autism spectrum disorder among children aged 6–17 years with special health care needs and
autism spectrum disorder: United States, 2011

Figure 1 is a pie chart showing the distribution of child's age when the parent or guardian was first told that the child had autism spectrum disorder. 


School-aged CSHCN identified as having ASD at a younger age (under age 5 years) were identified most often by generalists and psychologists, while those identified later (aged 5 years and over) were identified primarily by psychologists and psychiatrists.

Percent distribution of type of doctor or health care provider who first told parent or guardian that child had autism spectrum disorder, by child's age when parent or guardian was first told, among children aged 6–17 years with special health care needs and autism spectrum disorder: United States, 2011

Figure 2 is a stacked bar chart showing the distribution of type of doctor or health care provider who first told the parent or guardian that the child had autism spectrum disorder, by child's age when parent or guardian was first told. 
Nine out of 10 school-aged CSHCN with ASD use one or more services to meet their developmental needs. Social skills training and speech or language therapy are the most common, each used by almost three-fifths of these children.

Percentage of children aged 6–17 years with special health care needs and autism spectrum disorder who currently use selected health care services, by age: United States, 2011

Figure 3 is a bar graph showing the percentage of school-aged children with special health care needs and autism spectrum disorder who currently use selected health care services, by age.
More than one-half of school-aged CSHCN with ASD use psychotropic medication.

Percentage of children aged 6–17 years with special health care needs and autism spectrum disorder who currently use selected medication types: United States, 2011

Figure 4 is a bar graph showing the percentage of school-aged children with special health care needs and autism spectrum disorder who currently use selected medication types.

Wednesday, May 23, 2012

Takedown of a Vaccine Article


On Tuesday, TLC posted “Why shouldn’t we vaccinate our children,” which was one of the all-time worst pieces written about vaccines. It had outright falsehoods and oodles of misleading information. It was so bad, in fact, that I briefly wondered if it might be a deliberate effort to point out the lunacy of anti-vaccine activists. (It wasn’t.) That afternoon, I posted a sentence-by-sentence breakdown of one of the piece’s six sections, titled “Vaccines May or May Not Have a Link to Autism.”
The following day, the piece was updated — and several of my criticisms were addressed, although not in a manner that made any significant difference. At that point, all of the reader comments that had been added to the piece were disappeared.
Last night, Ken Reibel of Autism News Beat emailed me last night to report that he had heard from someone in the PR department of Discovery Communications, the company that owns TLC, and that the piece was going to be taken down. 
Time reports:
The post — by writer Josh Clark of HowStuffWorks — appeared on the Learning Channel’s (TLC) website; both HowStuffWorks and TLC are owned by Discovery Communications. Riddled with mistruths and flat-out errors, the post prompted a coalition of physicians’ organizations and vaccine activists to collaborate on a sharply worded letter signed by 19 groups, including the American Academy of Pediatrics (AAP) and the American Medical Association, defending immunization as “one of the most important decisions parents make to ensure their children’s health”...
The letter was sent last Thursday to Eileen O’Neill, group president for Discovery Channel and TLC; later that day, the article was removed from the site. A representative from Discovery did not respond to requests for comment.
“Discovery took down the article tonight = good things happen when smart people band together to support science!” e-mailed Amy Pisani, executive director of Every Child by Two, a vaccine-advocacy organization that learned about the article from a group of mothers who practice attachment parenting (the subject of TIME magazine’s ├╝bercontroversial cover story earlier this month). The mothers, according to Pisani, were shunned from their online attachment-parenting group because they vaccinated their children.

Tuesday, May 22, 2012

Protesting Torture

A previous post included video of outright torture at the Judge Rotenberg Center in MassachusettsThe Canton Patch is carrying a press release:
Occupy JRC will hold a peaceful protest against the Judge Rotenberg Center, scheduled for Saturday, June 2 from 12pm to 4pm. Location to be announced.
The Judge Rotenberg Center is the only place in the country to use aversives, including remotely controlled, painful electric skin shocks to change behavior in children with autism, developmental delays and/or psychiatric diagnoses.

The school has survived a move from Rhode Island to Massachusetts, multiple lawsuits, and the forced resignation of its founder and former Director, Matthew Israel. Most recently, the Judge Rotenberg Center hit the airwaves on a national level when the facility was required to release previously suppressed videotapes of former student, Andre McCollins being restrained face down for over seven hours and shocked 31 times after he refused to take off his jacket.
Occupy JRC will host the protest in Canton, time and place to be announced, and plans to include a march as a part of the day’s events.

Several speakers have been scheduled including Massachusetts Senator Brian A. Joyce, Cheryl McCollins (mother of former student, Andre McCollins), Dan Fisher (National Empowerment Center), Ari Ne’eman (Autistic Self-Advocacy Network), Laurie Ahern (Disability Rights International), Kat Whitehead (Community Alliance for the Ethical Treatment of Youth), Stephen Mark Shore (Adelphi University) and more.
Anderson Cooper recently featured the Center:

  video platformvideo managementvideo solutionsvideo player

Monday, May 21, 2012

House Passes TRICARE Amendment

A May 18 release from Rep. John Larson (D-CT):
In a huge victory for military families struggling with autism, the annual defense budget that was passed by the House of Representatives today includes an important provision authored by Congressman John B. Larson (CT-01) that will ensure that TRICARE – the military healthcare program – fully covers the treatments that military kids with autism need.

Larson’s measure, the Caring for Military Kids with Autism Act (H.R. 2288), which had 70 bipartisan cosponsors, was written in response to the appeal of a constituent – Rachel Kenyon, the wife of Sergeant Major William Kenyon of the Connecticut National Guard and mother of two – who spoke out at an event about the many struggles that military families with children with autism face with their TRICARE coverage.

“Today, the House of Representatives affirmed its commitment that just as we leave no soldier behind, we leave no military family behind either,” Larson said. “This would not have happened without the determination and strength of Rachel and the thousands of parents just like her fighting every day for their kids. With this action in the House today, we did right by Rachel and her family, as well as military families across the country by honoring their sacrifices by making sure they do not face barriers in access to care for their children that have an autism diagnosis.”

“I want to thank Representative Walter Jones, who was the lead sponsor on the Caring for Military Kids with Autism Act; Chairman McKeon and Ranking Member Smith, and all of the cosponsors of the Caring for Military Kids with Autism Act on both sides of the aisle for their efforts to make this happen,” Larson added.

Specifically, the language included in the National Defense Authorization Act of 2013 (NDAA) will ensure that the children of Army, Navy, Air Force, and Marine Corps members that have an autism spectrum disorder (ASD) diagnosis will no longer face caps in TRICARE on a behavioral health treatment, known as applied behavior analysis. It would also ensure that the children of military retirees that have an ASD diagnosis would have access to applied behavior analysis treatment. 

Sunday, May 20, 2012

Science, Media, and Autism

At the IMFAR conference in Toronto, one panel discussed how scientists should communicate with the media. The Thinking Person's Guide to Autism reports on remarks by freelance Journalist Karen Weintraub:
Remember: you are a specialist, she is a generalist. Her life is not all about your science, she doesn't have the time to become a complete expert on your science. She appreciates your passion for your work but she doesn't have time to consume it all. Don't expect her to have read all of your papers and books.
...Distinctions between media types

TV News
  • Hard to find experts, e.g., there are no autism TV specialists.
  • Have very little time to come up to speed. Don't expect a lot of thought from TV reporters re: the conversation.
  • TV reporters in particular -- "all went into journalism school because they're not good at math" -- if you throw numbers at them, they can't do anything with them. Maybe one pie chart...
  • Extremely dependent on what you say. They can't fabricate your comments or fill in the gaps. They need to lift your words and put them right in the story. They especially appreciate visual and metaphoric language.
  • Static shots of the lab where you work are not interesting!
Radio
  • Also a lot of time pressure. NPR tends to be a bit less stressful re: turnaround, but still high stress. 
  • Requires detailed descriptions -- have to create image in peoples' minds.
  • They need people do be direct.
  • They need pauses in the conversation so they can cut the tape/edit.
Print
  • More likely to find someone who specializes in autism, at least somewhat.
  • Need greater depth and detail, can lift out the parts they need from your interview.
  • Not every sentence has to be quotable, but some. Reports quote personal or visual sentences -- the ones that make the story come alive.
  • Need more sources, will ask you to point to other people -- it helps the reporter do her job.
  • Weintraub interviews differently for USA Today than for Nature, keep this in mind.

Saturday, May 19, 2012

France and Autism

In Unstrange Minds, Roy Grinker writes about the way in which psychoanalysis has warped France's approach to autism. Maria Cheng writes at AP:
Last month, a report by France's top health authority concluded there was no agreement among scientists about whether psychotherapy works for autism, and it was not included in the list of recommended treatments.
That provoked an outcry from psychiatrists. Groups including Freudian societies, the World Association of Psychoanalysis and France's Child Institute started a petition calling on the French government to recognize their clinical approach, focused on psychotherapy.
"The situation in France is sort of like the U.S. in the 1950s," said Dr. Fred Volkmar, a U.S. expert who directs the Child Study Center at Yale University. "The French have a very idiosyncratic view of autism and, for some reason, they are not convinced by the evidence."
...

In Spain, for example, autism treatment guidelines published in 2006 lumped psychotherapy together with alternative therapies like chelation, which involves the injection of chemicals into the body to remove heavy metals. Spanish officials ruled there was no evidence such alternative treatments work.
Joaquin Fuentes, a psychiatrist and scientific adviser for a Spanish autism group, said that where he works in the Basque region, autistic children go to regular schools and none are sent to psychiatric hospitals. "To be exposed to psychoanalytic treatment is a painful and unethical way of treating children with autism," he said.

Friday, May 18, 2012

Using Teachers to Screen for Autism

Mountainside, N.J. – In a study with national implications, researchers at Children's Specialized Hospital found that in underserved communities using teachers to screen for autism in preschools and day care centers is more effective than the current system that relies solely on parents and pediatricians to identify the disorder. The research, which could fundamentally change the way disadvantaged children are screened for autism, will be presented this week at the International Meeting for Autism Research, or IMFAR, in Toronto. Studies have long suggested that racial and economic disparities exist in the early diagnosis and treatment of autism and as a result many poor children with the disorder miss out on valuable early intervention.

Researchers at Children's Specialized Hospital, looking for innovative ways to identify these hard-to-reach children, created community-wide screening programs that used teachers as well as parents to help identify at-risk children. The programs also used culturally sensitive materials distributed in places such as health fairs and screening programs in health clinics. Employing these methods, the study found autism rates of nearly three percent in these underserved communities, significantly higher than the overall New Jersey rate of approximately two per cent.
...
The researchers found that in some communities where English is not a first language, for instance, a child who does not make eye contact might be considered deferential and respectful by a parent, even though this behavior potentially may be a sign of autism, Dr. Harris said. The researchers also found that challenging behavior in children may be recognized but not necessarily linked to autism. The second study compared how accurate parents and preschool teachers were at identifying children at risk for autism. Completed MCHAT screens were obtained by both parents and teachers for 190 children. An additional 405 children were screened by both parents and teachers using the Social Communication Questionnaire, or SCQ. “When parents answered the questions you had a much higher failure rate than you would expect,” Dr. Janvier said, adding some parents sought to provide what they perceived to be the “correct” answer.

....

Children’s Specialized Hospital Foundation supports the programs and services of the hospital. The Foundation is ranked among the top six pediatric hospital foundations in the country. To help, or find more information, visit www.childrens-specialized.org.

Thursday, May 17, 2012

Pediatricians

US News reports:
Many parents of children with an autism spectrum disorder don't feel they can turn to their pediatricians for advice on treatments, a new study finds.

Likewise, many pediatricians don't think they have the knowledge -- or time -- to devote to children with autism, with some citing reimbursement policies that don't allow for payment for lengthier appointments or for managing complex cases.

The pediatricians interviewed for the study also said they felt especially uncomfortable advising parents on alternative therapies, which are commonly used by families with autistic children.

"Most parents are not going to pediatricians with questions about treatments. They looked to them for referrals to specialists or to community resources, but they really weren't going to them for guidance about what sort of treatments they should pursue," said study author Dr. Susan Levy, who directs the Regional Autism Center and the Center for Autism Research at Children's Hospital of Philadelphia.

"And the pediatricians didn't feel informed enough to make those recommendations," she added.
Although the study involves a very small sample, its findings track with firsthand experience as well as conversations with many other autism parents.  Pediatricians often miss early signs of autism: many parents get the diagnosis only after months of false reassurances ("Don't worry: boys are late talkers.")  In turn, this problem may undermine their faith in the medical and scientific establishment.

Wednesday, May 16, 2012

Louisiana Expands Its Mandate

In Baton Rouge, WAFB reports:
A bill that gives children with autism greater health benefits has received final passage.
The bill, by Rep. Franklin Foil, expands mandatory autism coverage from 14 years of age to 21.

"It's huge," said Foil. "Unfortunately, a lot more children have autism in this state and what this bill does is it's insurance coverage for more children and more children get the services they need at and early age and that gets results. "
There are some caveats to qualifying, but if you're covered by insurance, the bill makes the companies provide coverage to those with autism up to the age of 21.
"It's amazing, Louisiana has been so great on this issue," said Shelly Hendrix, the mother of an autistic child.
The measure also removes a cap on coverage limits.

Tuesday, May 15, 2012

More on Life After High School

The study by Shattuck et al. on postsecondary outcomes also casts a light on poverty and inequality.  From the study (full text and abstract are currently online for free):
Youth from households with lower incomes also were significantly more likely to be disengaged, even after controlling for measures of impairment severity. This finding highlights the value of using population-based data relative to smaller clinical samples that often lack diversity. It also builds on previous findings in another examination of youth with an ASD after high school that found those with lower socioeconomic status had poorer behavioral outcomes after high school. The association between a lack of financial resources and poorer postsecondary outcomes among youth with an ASD also mirrors previous findings that found African-American individuals and those from poorer households to be at increased risk for disengagement from therapeutic services after leaving high school.
An emerging pattern of findings across a range of outcome measures suggests poorer youth with an ASD have very different life chances after leaving high school than more affluent peers. Income inequality and poverty rates have been increasing nationwide in recent years. In 2009, 20% of US children lived below the federal poverty line. Given current estimates of ASD prevalence and the poverty rate, ∼163 000 children with an ASD were living below the poverty line in 2009. Future research needs to examine how financial resources influence developmental trajectories and what interventions are needed to help poorer youth overcome barriers to accessing services and achieving fuller participation in society.

Monday, May 14, 2012

Life After High School

Times are tough for young people. Unemployment is high, and college costs are soaring.
For those who've been diagnosed with autism, the challenges of life after high school are even steeper, according to a study just published in the journal Pediatrics.
Within the first six years of getting out of high school, only a little more than one-third of young people previously diagnosed with an autism spectrum disorder, or ASD, had gone to college, and only a slim majority — 55 percent — had held paying jobs.
The first two years after high school are particularly hard, the researchers found, with less than half of the young people with an ASD having had any work.

The researchers compared the experience of the young people with autism to those with mental retardation, learning disabilities and impaired language or speech. Those with autism fared worse than the others when it came to jobs, the researchers found.
On the college front, those with autism were more likely than those with mental retardation to have attended some college but less like to have done so than those in the other two comparison groups.

An interview with Washington University's Paul Shattuck, lead author of the study:

Sunday, May 13, 2012

Autism and Schools: Good News and Bad

The Houston Chronicle reports on a Houston school for kids with disabilities:
A generation or more of mainstreaming students with disabilities has increased public acceptance, but employers have been slower to adapt. Options for community housing are still limited, as well. Monarch is trying to change that, one student at a time.
The school’s mission has broadened over the years.
It now serves students from prekindergarten through high school and offers a post-graduate program with internships, help finding jobs and, for some students, the transition to college. It has a small housing program, a cluster of homes near the campus where students ranging from their teens to early 30s live with a house parent.
An apartment program for more independent living could start next year.
Monarch serves students with attention deficit disorder, Tourette syndrome, traumatic brain injury, and mood, anxiety and seizure disorders. The number with autism spectrum disorders has risen dramatically over the past 15 years and now accounts for almost two-thirds of the school’s enrollment, executive director Marty Webb said.
In FloridaThe Orlando Sentinel reports:
Parents of autistic Lake students are upset about a plan to cease out-of-county busing for their children to attend a specialized Orlando charter school.
The school district is hoping to save $400,000 of transportation expenses it pays to bus 32 autistic students to Princeton House Charter School in Orlando. The district began footing the bill for busing about 10 years ago when officials said the district could not provide the autistic students with proper services.
Now, district officials are saying the students can get a proper education within Lake schools and want to cut the out-of-county busing during a tight budget year. The School Board still needs to figure out how to come up with about $1.3 million to meet next year's budget needs.
In GeorgiaWSB in Atlanta reports:
The family of an autistic high school student is outraged the state Board of Education won't let him graduate next week.
Sinclaire Coffer, 17, is a senior at North Springs Charter High School in Sandy Springs.
"He's a model student," his sister Capri told Channel 2's Mike Petchenik. "Not being able to graduate is an impediment to his dream.”
Coffer showed Petchenik paperwork that shows school officials are well aware of his difficulties with math. His transcripts show he excels in other subjects, including English and history.
"We’ve gotten a private tutor," his mother said. "He’s taken classes that are offered by the school in summer and throughout the school year.”
Still, Coffer has failed the state's required math graduation exam five times. 
I’ve been trying really hard," Coffer told Petchenik. "I passed all of the art ones on the first try, but it’s just math that gets me.”
Because of his diagnosis, the Coffers requested a special waiver from the Board of Education that would have allowed him to graduate. On Thursday, the board voted to deny his request.

"I’ve been trying really hard," Coffer told Petchenik. "I passed all of the art ones on the first try, but it’s just math that gets me.”

Saturday, May 12, 2012

The Diagnostic System

In The New York Times, Dr. Allen Frances criticizes psychiatry's monopoly over diagnosis:
Until now, the American Psychiatric Association seemed the entity best equipped to monitor the diagnostic system. Unfortunately, this is no longer true. D.S.M.-5 promises to be a disaster — even after the changes approved this week, it will introduce many new and unproven diagnoses that will medicalize normality and result in a glut of unnecessary and harmful drug prescription. The association has been largely deaf to the widespread criticism of D.S.M.-5, stubbornly refusing to subject the proposals to independent scientific review.
Many critics assume unfairly that D.S.M.-5 is shilling for drug companies. This is not true. The mistakes are rather the result of an intellectual conflict of interest; experts always overvalue their pet area and want to expand its purview, until the point that everyday problems come to be mislabeled as mental disorders. Arrogance, secretiveness, passive governance and administrative disorganization have also played a role.
New diagnoses in psychiatry can be far more dangerous than new drugs. We need some equivalent of the Food and Drug Administration to mind the store and control diagnostic exuberance. No existing organization is ready to replace the American Psychiatric Association. The most obvious candidate, the National Institute of Mental Health, is too research-oriented and insensitive to the vicissitudes of clinical practice. A new structure will be needed, probably best placed under the auspices of the Department of Health and Human Services, the Institute of Medicine or the World Health Organization.
All mental-health disciplines need representation — not just psychiatrists but also psychologists, counselors, social workers and nurses. The broader consequences of changes should be vetted by epidemiologists, health economists and public-policy and forensic experts. Primary care doctors prescribe the majority of psychotropic medication, often carelessly, and need to contribute to the diagnostic system if they are to use it correctly. Consumers should play an important role in the review process, and field testing should occur in real life settings, not just academic centers.
Psychiatric diagnosis is simply too important to be left exclusively in the hands of psychiatrists. They will always be an essential part of the mix but should no longer be permitted to call all the shots.

Friday, May 11, 2012

Implementing the Kentucky Mandate

A release from Autism Speaks:
Autism Speaks praised the Kentucky Department of Insurance for issuing an advisory opinion directing health insurers to start covering services provided by supervised ABA providers, finding that autism treatment would be "severely compromised" without their services.
Kentucky law explicitly exempts persons who provide Applied Behavior Analysis (ABA) under the supervision of a licensed professional from themselves having to gain certification, according to the opinion, signed by Insurance Commissioner Sharon Clark. Their services should therefore be reimbursed under Kentucky's 2010 autism insurance reform law, the department concluded.
“This opinion eliminates a significant and unnecessary hurdle that has blocked many Kentucky families from obtaining appropriate levels of ABA therapy for their children with autism,” said Lorri Unumb, Esq, vice president for state government affairs. “The Kentucky Department of Insurance correctly interpreted the text of the state’s 2010 autism insurance reform law and the will of the Legislature in directing health insurers to start covering these services.”
The opinion noted that ABA therapy requires a functional assessment and behavior plan developed by a Board Certified Behavior Analyst (BCBA) or Board Certified Assistant Behavior Analyst (BCaBA). The direct services ultimately provided under the treatment plan, however, are typically rendered by "supervisees" – the front-line personnel who carry out the intervention.
"Clearly, Kentucky's statutes pertaining to ABA and the treatment of autism spectrum disorders contemplate the active involvement of supervisees, provided that they are acting under the extended authority and direction of a BCBA or a BCaBA," the opinion states.
"To exclude coverage for supervisees undermines the intent of (state law) which is to mandate coverage for the diagnosis and treatment of autism spectrum disorders," the order said. "Without the direct services provided by supervisees, the treatment of autism is severely compromised."

Thursday, May 10, 2012

Autistic Adults in San Antonio

Previous posts have dealt with ASD people "falling off the cliff" when they age out of the school system.  The San Antonio Current reports:
Rita Kosnik, professor of management at Trinity University and mother of a child with Asperger’s syndrome, said that for these students high school graduation is nothing to celebrate. “It’s a curse. They go into a no-man’s land. They get turned down for services day after day because they can walk and they can read.”

Kosnik estimated that as many as 88 percent of high-functioning autistic adults today are underemployed, living in basements and guest rooms and “doomed to be beneficiaries of our Social Security system.”

Small parent-led groups, such as the 500 Olmos Club that Kosnik leads with two other parents, have helped a handful locally, but conference speakers agreed that a huge need exists in San Antonio. “These people deserve to be happy and have some sense of success,” said Rosario Farahani-Espinoza, a retired teacher with two autistic children.

A program out of Phoenix provides some clues as to where a coalition here could potentially take things.

Introduced by SA City Manager Sheryl Sculley, Denise Resnik, co-founder of the Southwest Autism Research and Resource Center, talked up her group’s quick successes — thanks in part to corporate donors: a 1,800-square-foot campus, regular research and pharmaceutical trials, and — perhaps most impressive — an employment rate of 65 percent. (The average for autistic adults, is about 10 percent.) Students there have also contributed 30,000 hours of community service in the past three years.

“At times I feel like we are really with young adults exactly where we were 20 years ago with early intervention,” Resnik said.

Dan Burns, chair of the Autism Trust USA and contributing editor at the online news source Age of Autism, made the drive from Dallas for the breakfast. He’s been working on a possible partial solution: a summer camp in Austin that will gather for the first time this summer, develop into a full-time vocational residential community in the fall, and then, hopefully, develop into a college campus.

It’s known as An Independent Me, and it already has some permanent and part-time campers lined up for the summer. “We want to get this going anyplace it’s needed,” Burns said. “I’m the Johnny Appleseed going out and trying to get this going, wherever we can find the energy and the resources.”

Wednesday, May 9, 2012

The Politics of DSM-5


At The New York Times, Benedict Carey reports on the annual meeting of the American Psychiatric Association:
The proposed definition of autism, which would eliminate related labels like Asperger’s syndrome and “pervasive developmental disorder,” came under fire in January, when researchers at Yale University presented evidence that about half of the people who currently have a diagnosis on the higher functioning end of the “autism spectrum” would no longer qualify under the new definition.
At this week’s annual meeting, researchers presented data from an unpublished study of some 300 children, finding that the proposed definition would exclude very few who currently have a diagnosis of autism or a related disorder.
But meeting attendees got mixed messages on autism. In a talk on Tuesday, Dr. Susan E. Swedo, head of the panel proposing the new definition, said that many people who identify themselves as “aspies,” for Asperger’s syndrome, “don’t actually have Asperger’s disorder, much less an autism spectrum disorder.” Dr. Swedo is a researcher at the National Institute of Mental Health.
The issue is hardly settled. Findings from published studies are conflicting, but three recent analyses provide support for the Yale estimate, and more papers in the pipeline are also documenting a significant reduction in numbers of those who would qualify under the new criteria. Getting such a diagnosis is critical to obtain state-financed services for children with special needs.
“I certainly hope the D.S.M. task force is right, that the numbers won’t change much,” said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and senior author of the study presented in January. But if the new definition does not change who gets a diagnosis, he asked, “Why mess with it at all?”
At MedPage Today, John Gever is more explicit about Dr. Swedo's comments:
The head of the American Psychiatric Association committee rewriting the diagnostic criteria for autism spectrum disorders took on the panel's critics here, accusing them of bad science.
Susan Swedo, MD, of the National Institute of Mental Health, said a review released earlier this year by Yale University researchers was seriously flawed. That review triggered a wave of headlines indicating that large numbers of autism spectrum patients could lose their diagnoses and hence access to services.
Swedo spoke at the American Psychiatric Association's (APA) annual meeting, in her role as chairperson of the work group developing new diagnostic criteria for neurodevelopmental disorders in DSM-5, the forthcoming fifth edition of the APA's Diagnostic and Statistical Manual of Mental Disorders.
She was especially incensed by reports in consumer media about the Yale group's study, led by aNew York Times article with a "blaring" headline that read, "New Definition of Autism May Exclude Many, Study Suggests." The Yale study, according to the Times article, found that most patients with Asperger's syndrome and about 25% of those with overt autism would not qualify for those diagnoses under DSM-5.
Bloggers in the autism spectrum community then got the numbers wrong and claimed that DSM-5 would deprive 65% of all autism patients of their diagnoses, "striking fear in the hearts of families," Swedo said.
In fact, she said, the Yale study and hence the Times and other reports messed up. "I can assure you that it is not true," she told APA meeting attendees.

Tuesday, May 8, 2012

AutismAid

From a new group, AutismAid:
Lawrence Goldfarb, founder of LRG Capital Group and Bay Area autism activist, and Tim Welsh, national activist and voice for autism awareness, have created AutismAid, a 501(c)3 with the goal and objective of being an umbrella for autism organizations and supporters across the globe to unify and gather under for support. Their desire is to refocus education on key issues in autism and the mobilization of communities to create a sustainable safety net, effectively providing a balance of services in the community that they feel has not been adequate.

The project was born out of an observation that while various niche-interest autism groups are critical, the effectiveness of these groups is restricted to only those niches where a multitude of different understandings and restrictions for participation and inclusion may exist. For Lawrence and Tim, this involves breaking down any existing discrimination between socioeconomic status, ethnicity, and geographic locations. Once freed of these barriers, the project will allow the voices of all to be heard, while adding to a collective consciousness of autism and how it affects millions of our friends and families worldwide.

In order to address the broad range of views and opinions on autism and autism care, Lawrence and Tim first seek to recognize and acknowledge the achievements of these smaller communities, while paying it forward to the creation of a greater community of autism supporters and workers who will make a difference in saving lives. Lawrence and Tim invite businesses, non-profits, the medical community, and individuals from neighborhoods around the world to participate in the cause. "The Tommy Foundation is thrilled to have a major player jump into the arena with us, and look forward to continuing to make the autism movement a stronger place for its people," says Rich Everts, co-founder of The Tommy Foundation, which is in the umbrella of AutismAid, and who is also the director of The United States of Autism (2012). Currently, Lawrence and Tim are in the process of formulating the criteria and standards for participation, as well as collecting nominations and submissions from regional service providers. If you would like to learn more and be involved, please email Lawrence Goldfarb at larry@lrgcap.com or Tim Welsh at realtannersdad@gmail.com.

Follow & like Lawrence Goldfarb at https://twitter.com/LarryRGoldfarb and https://www.facebook.com/BayAreaAutismForum
Follow Tim Welsh at https://twitter.com/TannersDad

Insurance Legislation in Oregon

The Lund Report offers some background on Oregon:
Although Oregon’s next legislative session is 10 months away, work is already beginning on legislation to establish requirements for health insurance coverage of autism spectrum disorders and streamline the process of obtaining care.
A closed door work session was held at the Capitol on May 1, and included legislators, insurance industry representatives and autism advocates such as Portland resident Paul Terdal, the father of two autistic sons.
During the 2009 legislative session, Terdal made his first attempt at becoming involved in changing the laws regarding insurance coverage of autism. His efforts were limited, though, as he talked to some legislators but didn’t really lobby the issue.
By 2011, Terdal was much more active in the process. He helped work on a proposed law, Senate Bill 555. That bill made it through the Senate Health Care, Human Services and Rural Health Care Policy Committee and went to the budget-writing Ways and Means Committee, where it stalled until the session adjourned.
...
With new figures in hand, a meeting took place in May with representatives of the Oregon Health Authority, the Public Employees’ Benefit Board, Sen. Chris Edwards (D-Eugene) and Rep. Peter Buckley (D-Ashland). Terdal said that everyone was in agreement that the initial analysis was incorrect. However, it was very late in the session at a time when lawmakers were struggling to balance the budget as revenues continued declining.
Buckley, who co-chairs the Ways and Means Committee, confirmed that popular programs such as Temporary Assistance for Needy Families were still being cut, making it difficult to create or justify any new programs.
Finally, in February, a similar bill was introduced, Senate Bill 1568, but Sen. Laurie Monnes Anderson (D-Gresham), who chaired the healthcare committee, never called for a vote, saying she needed more details about its impact on the insurance industry.

Monday, May 7, 2012

Congressional Update

Autism Speaks Applauds Congressmen Moran, Doyle on Introduction of ‘AUTISM Educators Act’
WASHINGTON, DC -- Autism Speaks, the nation's leading autism science and advocacy organization, today applauded Congressmen Jim Moran (VA-8) and Michael Doyle (PA-14) for introducing the AUTISM Educators Act to improve training for teachers who work with students on the autism spectrum.

The bill (HR.5195) would pilot a five-year grant program for public schools to partner with university or non-profit programs in creating training programs for teachers who work with large numbers of high-functioning students with autism. The training programs would incorporate parental involvement and retention of skilled educators.
The bill, called the Autism Understanding and Training in School Methodologies for Educators Act of 2012, states that classroom, teachers and staff “often are not adequately trained to work effectively with students with autism spectrum disorders, who have a wide diversity of characteristics.” The bill also noted the additional challenges faced by members of the military and foreign service due to frequent moves which disrupt the continuity of their children’s education.

"This legislation is the product of a grassroots effort by parents, instructors, school officials and caring communities," said Moran. "Autism Spectrum Disorders are being diagnosed at an exploding rate. We have a responsibility to do everything in our power to provide the best education for our children."
The bill has been referred to the House Education and Workforce Committee.

“Improved training for teachers and school districts is an important component of mainstreaming children with autism into their educational environment,” said Peter Bell, Autism Speaks executive vice president of programs and services. “Better access to behavioral therapy in conjunction with autism-friendly educational settings are key to successful mainstreaming.”

Doyle said, “It's essential that educators are able to take advantage of our rapidly growing knowledge base - and that we increase the number of teachers trained to help autistic students. It's one of a number of actions the federal government should take to help individuals with autism and their families.”

Autism Speaks Lauds Senators Casey, Isakson for Proposal to Raise Autism Funding with New Postage Stamps
WASHINGTON, DC -- Autism Speaks, the nation's leading autism science and advocacy organization, today applauded U.S. Senators Robert Casey Jr (D-PA) and Johnny Isakson (R-GA) for proposing new funding for autism research and services through the sale of autism awareness stamps by the U.S. Postal Service.
The bipartisan bill, S.2472, would direct the U.S. Postal Service to create and sell the stamps over a five-year period to supplement federal support for autism research and services. The “semipostal” stamps would be sold at slightly higher cost with the extra revenues dedicated to autism research and services.
The images used on the stamps would use artwork created or chosen in consultation with individuals on the autism spectrum.
“Autism Speaks commends Senators Casey and Isakson for this innovative approach to raise autism awareness along with new funding for autism research and services,” said Peter Bell, Autism Speaks executive vice president of programs and services.

Sunday, May 6, 2012

Assuaging DSM-5 Concerns

Will DSM-5 cause some people on the spectrum to lose their diagnosis -- and their services? The Wall Street Journal reports on preliminary data presented at the American Psychiatric Association annual meeting:
On Sunday, the committee overseeing the changes to the autism criteria announced data from so-called "field trials" conducted by several academic centers showing that children diagnosed with autism or related disorders using the current criteria almost always received a diagnosis using the proposed new criteria as well.
The prevalence of autism using both criteria was essentially unchanged, though there were a few cases where children were diagnosed by one set of criteria and not the other, according to Susan Swedo, head of the work group and a senior researcher at the National Institute of Mental Health. Over 600 children were tested as part of these trials.
The concern that children who need services for autism-related symptoms will be denied them because of proposed changes to the autism diagnostic criteria is "not true," said Dr. Swedo.

Saturday, May 5, 2012

Ne'eman on Lovaas

Ari Ne'eman of the Autistic Self-Advocacy Network recently spoke at Bloomfield High School in South Orange, New Jersey. Marcia Worth writes at The South Orange Patch:
Citing one renowned researcher, Dr. Ivar Lovaas, Ne’eman noted that rendering autistic patients “indistinguishable from their peers” – in other words, able to mimic ‘normalcy’-- was widely seen as "success” in the field of autism treatment.
...
“I don’t know many people whose goal, when they wake up in the morning, is to be indistinguishable from their peers,” noted Ne’eman wryly in his speech. “Lovaas’ studies weren’t measuring independent living skills or academic skills like science or math, they were measuringindistinguishability from peers. Is that meaningful?”
Designing treatment methods based on conformity to an opposing ideal automatically defines the starting point, "acting autistic," as "wrong," Ne’eman said.
Exploring the notion of different = wrong in a separate context, Lovaas conducted other studies, notably the “Feminine Boy Project” conducted at UCLA medical center in the 1970s, which ran concurrently with the UCLA “Young Autism Project.”
“The purpose of the Feminine Boy Project was “to rescue children from homosexuality. Now, we understand this to be an astonishingly disreputable undertaking,” said Ne’eman, noting that Lovaas’ treatment methods for the Young Autism Project have not been challenged in the same way in the intervening years.

“The medical model of disability was viewed from a perspective of charity but not from a perspective of civil rights,” he said. “Horrible things happen in our society to people who are not ‘normal’.”
...
“Acquiring social norms like hygiene are valuable because there’s a reason for it. It’s not like eye contact,” he said, referring to the difficulty many autistic people have with meeting other people’s gaze. “You have to ask, is this something that is a problem for the child or the people around the child? It’s perfectly legitimate to encourage skill-learning that will help children survive and get a job, etc. But hand-flapping doesn’t hurt anyone. It can be very important to us and very comforting to us.”

Friday, May 4, 2012

Journal Issue on Children With Disabilities


The Future of Children,a joint project of the Woodrow Wilson School and Brookings, has a new volume, Children with Disabilities
Children with Disabilities
Volume 22 Number 1 Spring 2012
Contents

Children with Disabilities: Introducing the Issue
Janet M. Currie and Robert Kahn
The Changing Landscape of Disability in Childhood
Neal Halfon, Amy Houtrow, Kandyce Larson and Paul W. Newacheck
Childhood Health: Trends and Consequences over the Life Course
Liam Delaney and James P. Smith
The Economic Costs of Childhood Disability
Mark Stabile and Sara Allin
Disability and the Education System
Laudan Aron and Pamela Loprest
Health Insurance and Children with Disabilities
Peter G. Szilagyi
How Can Quality Improvement Enhance the Lives of Children with Disabilities?
James M. Perrin
Emerging Technologies and Their Impact on Disability
Paul H. Wise
Prevention of Disability in Children: Elevating the Role of Environment
Stephen A. Rauch and Bruce P. Lanphear
Appendix 1
Future of Children Staff
Appendix 2
Future of Children Staff
Appendix 3
Mark Stabile and Sara Allin

Thursday, May 3, 2012

DSM Comments

At Disability Scoop, Michelle Diament reports on a public comment period for DSM-5:
The panel responsible for crafting new diagnostic criteria for autism, intellectual disability and other disorders is seeking public comment for a third and final time.
The American Psychiatric Association said Wednesday that it will accept public comments now through June 15 on proposed changes for the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders. The first revision in more than a decade to what’s considered the bible of mental health disorders, the new edition of the manual is expected to be published in May 2013.
Among the most controversial proposals is a dramatic change to the definition of autism. Those behind the DSM are looking to fold autistic disorder, Asperger’s syndrome, childhood disintegrative disorder and pervasive developmental disorder, not otherwise specified under one umbrella diagnosis of “autism spectrum disorders,” with diagnosticians indicating a level of severity associated with an individual’s condition.