More on DSM-5

DSM-5 is now in effect. At The Huffington Post, Catherine Pearson writes:

Geraldine Dawson, chief science officer of the nonprofit Autism Speaks, said the move to drop Asperger's as a separate disorder will be felt mostly by parents seeking a first-time diagnosis for their son or daughter.

"There is no reason to re-diagnose a child who already has a diagnosis of an autism spectrum disorder, such as autism or Asperger's syndrome," Dawson told HuffPost. "That child will continue to qualify for an autism spectrum disorder."
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"I think these changes will really come into play more [for parents] once an electronic medical record requires a specific diagnosis, or if payers require it," said Dr. Matthew Perkins, medical director with the New York State Office of Mental Health's Division of Children and Family Services. Dagnostic changes can be slow to trickle down to all health care providers, particularly because many physicians stick largely to what they initially learned in training, he added.

"Parents should ask about and be aware of their child's particular diagnosis, especially if it will impact insurance reimbursement for services, or determine the eligibility for special education services at school," Meyers echoed.

Minnesota Mandate Passes

Autism Speaks reports:

The Minnesota Legislature has sent Governor Mark Dayton a bill that would make Minnesota the 33rd state, and the first in 2013, to enact autism insurance reform. The reforms are included in an omnibus health care bill approved late Friday night 73-61 by the House of Representatives and today 39-28 by the Senate.

Governor Dayton is expected to sign the bill which would take effect in January 2014.

Sponsored by Rep. Kim Norton (DFL-Rochester), the measure applies to state-regulated large group health plans which would be required to cover speech, occupational, physical and behavioral therapy, including Applied Behavior Analysis (ABA), up to age 18. An estimated 750,000 state residents would gain coverage. State employees will be added no later than 2016.

The Dayton administration hopes to also extend coverage to the small group and individual markets through the health exchanges it creates under the Affordable Care Act.

DSM-5 Is Here

MedPage Today reports:

The fifth edition of the "psychiatrist's bible" was officially released here in all its 947-page glory, with its developers offering a spirited rebuttal to their critics.

Known as DSM-5, the new version of the American Psychiatric Association's (APA) Diagnostic and Statistical Manual of Mental Disorders was launched at a press briefing to kick off the organization's annual meeting. Most of the changes from the previous edition had already been made public, at least in general outline.

At the briefing, DSM-5 Task Force chairman David Kupfer, MD, of the University of Pittsburgh, defended several of the most heavily criticized revisions from DSM-IV, as the last edition was called.

Other top APA leaders, including current president Dilip Jeste, MD, of the University of California San Diego, and president-elect Jeffrey Lieberman, MD, of Columbia University in New York City, addressed another, more recent controversy over DSM-5, which was sparked by a blog post from National Institute of Mental Health (NIMH) Director Thomas Insel, MD.

In his blog, Insel criticized the DSM classification system's scientific validity, and his remarks were then reported in consumer media as suggesting DSM-5 is "out of touch with science," as a New York Times headline put it.
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Whereas DSM-IV had four separate disorders that could be used for children showing symptoms associated with autism, these are collapsed into a single "autism spectrum disorder" with specifiers for specific symptom types and severities. Autism advocacy groups expressed concern that the revision would end up revoking some children's current diagnoses, depriving them of access to services.

Kupfer said the DSM-IV system had proved to be deeply flawed. The criteria for each of the four disorders were vague enough that diagnoses were inconsistent -- children with similar symptom constellations were being assigned to different DSM-IV classifications almost at random.

He said the task force was sensitive to worries about the consequences of revising the system, but they appear to be groundless. "We now already have findings and published studies that suggest that there will really be very little impact on prevalence or eligibility for services."

The New York Times offers a correction to an earlier article:

An opinion essay last Sunday about the usefulness of the Diagnostic and Statistical Manual of Mental Disorders referred imprecisely to the use of the handbook in determining eligibility for special-education services. While many school districts rely on the D.S.M. for such assessments, it is not a federal requirement that a condition like autism, A.D.H.D. or conduct disorder be diagnosed for a child to qualify for special therapies.

Report on Military Families

Blue Star Families, a national, non-profit network of military families, has a new report on the military family lifestyle.

The Exceptional Family Member Program (EFMP) offers support for families that have a family member with a medical or an educational need that requires special services. Similar to the 2012 survey, 18% of respondents have a family member enrolled in the EFMP. The top four conditions reported this year include: 46% with a speech or language impairment, 39% with a developmental delay, 36% with autism, and 28% with a specific learning disability.
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Relocations can be particularly challenging for those who have children with special needs. While 72% felt that TRICARE provides appropriate medical care for their families, many respondents reported challenges with access to services during relocations. Sixty-eight percent of respondents struggled with finding new doctors, and 65% reported difficulty in obtaining access to respite care as they relocated. Families may also struggle when trying to obtain recommended specialty services that are not covered by TRICARE, such as applied behavior analysis (ABA) therapy for children with autism. The unreimbursed costs can cause financial hardships for families. One Navy spouse described this challenge for her family when she stated, “He probably would’ve stayed in if he felt that we would not have to spend so much money out of pocket obtaining speech, occupational, and physical therapy for our son.”

If the family is also trying to access state benefits such as Medicaid, the lack of waiver portability becomes a challenge since the EFM will be moved to the bottom of the waitlist every time the family moves to a new state. Sixty-four percent of respondents reported difficulty accessing community/state-based supports, such as Medicaid waiver benefits. In addition, 55% of respondents with an EFM also reported difficulty finding adequate housing when relocating. Since families often do not know exactly where they will be living when they PCS [permanent change of station], families’ ability to plan in advance can be significantly inhibited. Finally navigating the educational system can be challenging for families with special needs children. Sixty-three percent of respondents felt supported by their local school systems. Of those with children in the DoDEA school system, 65% felt supported, while 35% percent did not feel supported. Regardless of how supported they may feel in their current schools, relocation can bring an additional set of challenges. The Individuals with Disabilities Act (IDEA) describes guidelines for qualification and requires school districts to provide comparable services when a student moves, but the DoD and each state establish their own eligibility criteria. Thus, there is a variety of ways that each school district can fulfill the federal regulations, which can lead to inconsistency as a student moves from state to state or even to a new district.

CDC and Autism Prevalence

Shaun Heasley writes at Disability Scoop:

In a first-of-its-kind report, the U.S. Centers for Disease Control and Prevention says that as many as 1 in 5 American children has a mental disorder including autism.

The report released Thursday focuses on kids ages 3 to 17 between the years 2005 and 2011. It is said to be the most comprehensive federal look at children’s mental health issues to date.

Attention deficit hyperactivity disorder, or ADHD, was the most common diagnosis, with nearly 7 percent of kids affected. Meanwhile, behavioral or conduct problems touched 3.5 percent of children while 3 percent had anxiety and roughly 2 percent were diagnosed with depression, the CDC found.

The report is largely based on data collected through other surveys. Accordingly, it puts autism prevalence at 1.1 percent, though a more recent government survey released earlier this year suggests that number may in fact be 2 percent.

From the report:

The reported prevalence of ASDs has increased markedly in recent decades, both in the United States and other industrialized countries (82–84). In the United States, population-based ASD prevalence can be estimated using two nationally representative surveys (NHIS and NSCH) and ADDM, a monitoring network that tracks ASD prevalence in 14 population-based sites.
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Estimates from these three systems show a strong predominance among boys, with boy:girl ratios ranging from 3.4 to 4.5. Other demographic differences vary somewhat among surveys and survey years. The prevalence tends to be higher among white non-Hispanic children and among children living in families in which the most highly educated adult has attained more than a high school degree. Although some regional differences exist, they are not consistent across surveys. NSCH estimates also suggest a higher prevalence among children with health insurance. Estimates did not vary by poverty level.

Insurance Mandate Action in CA & NC

In California, Laura Shumaker writes at The San Francisco Chronicle:

With California’s landmark autism insurance coverage law set to sunset in 2014, the California State Senate today approved a bill by California Senate President pro Tempore Darrell Steinberg (D – Sacramento) to extend the law’s provisions until 2019. Senate Bill 126 renews Senate Bill 946 of 2011, requiring health insurance companies to provide coverage of behavioral health treatment for autism spectrum disorders as a medical benefit. SB126 passed with bipartisan support with 36 Senators voting in favor of the bill, and none opposed. The bill now heads to the California State Assembly.

WGHP in High Point, North Carolina reports:

A bill requiring employee-based insurance plans to cover treatment and therapy for patients with autism disorders passed the state House Wednesday night.

“We’ve been working for about five years to try to get coverage for children with autism,” said Selene Johnson, executive director of ABC of N.C. Child Development in Winston-Salem.

With therapy, the non-profit school helps children with communication and social skills in addition to dealing with some of the behaviors that often accompany autism.

“We rely on grants and private donations to help families but that can only go so far,” Johnson said.

The bill, if passed by the Senate and signed by Gov. Pat McCrory, would require insurance plans to cover children and adults up to age 23 and provide up to $36,000 in annual coverage

TRICARE, the Pentagon, and Bureaucratic Inertia

At Time, Air Force spouse Jeremy Hilton writes:

In 2010, military families filed a class action lawsuit against the Department of Defense (DoD) and TRICARE (the military’s healthcare insurance program) for their failure to provide medically-appropriate behavioral health treatment for military children impacted by autism.

In July, a federal judge found in favor of those military families. But the DoD, who is represented by the Department of Justice, is expected to continue appealing the case, possibly all the way to the Supreme Court.
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In January, Obama signed the 2013 defense authorization bill, which contained an amendment creating a one-year pilot program for the treatment of military children with autism, to be implemented in 90 days.

We are at 133 days and counting as of May 16 with no expectation for a program anytime soon.

In a recent conversation with a retired four-star general (speaking about processes in the Pentagon), he stated that “the bureaucrats in the Pentagon have a Ph.D. in log rolling…when they don’t want to do something, it doesn’t get done.”
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I doubt that politicians realizes how hypocritical their comments sound to middle-class military families who have “children with autism or Down’s syndrome, and other serious disabilities,” who are fighting the Pentagon to give their kids a chance.

Given what Mrs. Obama and Dr. Jill Biden have done through their Joining Forces campaign, military families like mine are really trying hard to give the President the benefit of the doubt, and trying to remain hopeful.

In the end, this is President Obama’s Administration.

Special Education in Michigan

WOOD-TV in Grand Rapids, Michigan reports:

The number of children getting special education services is going down in almost every West Michigan school district, despite the fact that the number of autism diagnoses is climbing.
The allegation is that districts are cutting special education services to save money.

So Target 8 crunched numbers obtained from the state, and found that while there's been a modest increase in the number of children with autism in special education, the overall numbers are going down. Parents and special education advocates told Target 8 that means some children with special needs may not be getting the help they deserve.
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The superintendent of Calhoun County's Intermediate School District refused to sit down with Target 8 investigators, but did refer us to their attorney, Rob Dietzel.

Dietzel said the ISD follows strict federal guidelines that they must provide a free, appropriate public education to everyone.

“That standard is a fairly low standard. Those students are entitled to a public education from which they can benefit but they're not entitled to every service or program that might help them,” Deitzel said. “In other words, the threshold or the standard is pretty low and when you have the budget cuts that school districts have faced, the standard is one thing and then everything above that equates to dollars.”

Dietzel said kids who need extra help get it, regardless of their diagnosis. He also said the district does get some money back from the federal government for kids labeled as special education students, the amount is usually less than 30 percent of the cost of those educational services.

Target 8 used the Freedom of Information Act to get documents from the Calhoun County ISD’s special education program to find out what its records showed.

Again and again, when talking about ways to cut costs, one of the options was to put fewer kids in special education programs. The district even hired a consultant to look at program costs, a consultant who also suggested fewer kids in special education would save money.
Yet Dietzel said that was only a suggestion.

Asperger Comeback?

Previous posts have noted that DSM-5 eliminates the diagnosis of Asperger's Disorder.  At The Journal of Autism and Developmental Disorders, Luke Y. Tsai has an article titled "Asperger's Disorder Will Be Back."  The abstract:

This review focuses on identifying up-to-date number of publications that compared DSM-IV/ICD-10 [International Statistical Classification of Diseases and Related Health Problems] Asperger’s disorder (AspD) to Autistic Disorder/High-functioning Autism (AD/HFA). One hundred and twenty-eight publications were identified through an extensive search of major electronic databases and journals. Based on more than 90 clinical variables been investigated, 94 publications concluded that there were statistically significant or near significant level of quantitative and/or qualitative differences between AspD and AD/HFA groups; 4 publications found both similarities and differences between the two groups; 30 publications concluded with no differences between the two groups. Although DSM-5 ASD will eliminate Asperger’s disorder. However, it is plausible to predict that the field of ASD would run full circle during the next decade or two and that AspD will be back in the next edition of DSM.

At HealthDay, Lisa Esposito writes that the issue involves identity:

Some people with Asperger's syndrome "formed their first identity of normality within the group," said Liane Holliday Willey, senior editor of the Autism Spectrum Quarterly and an autism consultant in Grand Rapids, Mich. She has Asperger's.

So does Brian King, an Illinois-based relationship coach and licensed clinical social worker. With the change, he said, "people who have embraced the Asperger's label are now thinking, 'I have an Asperger's support group. I call myself an Aspie. If you take that from me, who am I?'"

Erik Beras writes at WESA radio in Pittsburgh:

Luciana Randall, the director of the advocacy group Autism Connection of Pennsylvania, worries that this change might affect younger people currently diagnosed with Asperger's syndrome.

"It's similar, but these parents tend to think that they fought every step of the way," she said. "And if they fought to promote their child’s personality and skill level and abilities, they are doing this in school and scouting and church, synagogue, temple, whenever they are trying to break ground for their child and explain who they are it helps to have that book and article and explain this is Asperger's."

She said so many people with Asperger's cling to that identity of high intelligence and high skill levels. And that in some ways, even among those with Asperger's, there is a stigma to saying they have autism.

"Really a lot of this is sort of speculation because we haven’t had people diagnosed under the DSM 5 yet," she said. 

Rising Tide Car Wash

Many posts have discussed employment issues. WTVJ-TV in South Florida reports on Rising Tide Car Wash, Parkland, Florida, which employs people on the spectrum:

With more than 35 employees with autism, Rising Tide is a car wash with a cause.

It has special meaning to the father and son co-founders.

“My brother has autism. He’s 22 years old and probably for the last three years we’ve been thinking about what Andrew’s going to do,” Tom D’Eri, who founded the Parkland car wash with his father John. “It means so much to us to create something that can actually have an impact on so many individuals.”

“I like this job because it’s fun and better than staying home and doing nothing and all that stuff and it’s very important to pay rent and I’ve been dying to have a job all my life,” V'lon Small said.

It’s only been a month since the car wash opened up and already business is looking pretty good.
“We’re the largest single store retail employer of individuals with autism," said Tom D'Eri.

And he’s talking about in the entire country.

NC Mandate Bill

A release from the Autism Society of North Carolina:

State lawmakers have an opportunity to right an unfortunate injustice this legislative session. Currently in North Carolina, the nearly 60,000 individuals with autism and their families face unfair financial hardship because of an inequality in their health insurance coverage.

To correct this inequality for North Carolina families, House members from both sides of the aisle have introduced House Bill 498 which requires private health insurance companies and the North Carolina State Health Plan to cover the diagnosis and treatment of autism.

Thirty-two states currently require autism insurance coverage, while eight more are considering similar legislation. This legislation has afforded thousands of families in other states access to autism treatment that until now was only available in select corporations and through the federal government’s TRICARE insurance program. The 40 House sponsors of HB498 have taken an important step towards assuring this same access to autism treatment for North Carolina families.
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While the costs of autism care are staggering, the cost for autism health insurance coverage is minimal. The insurance industry’s own claims data show that autism insurance coverage generates an increase in premiums of less than one percent.

In our state, that small investment would yield big returns. Autism treatment focuses on diminishing or controlling symptoms that can range from mild to quite severe. Research shows that symptoms of autism can be improved by appropriate evidence-based therapies thus improving the quality of life for the individual and his or her family and reducing the long-term costs to society of caring for untreated children. Every new child diagnosed with autism will cost an estimated $3.2 million over his or her lifetime. Early diagnosis and intervention can reduce this cost by two-thirds. Autism insurance coverage will help make this happen.

Autism insurance coverage would reduce costs to schools because children with autism would receive a head start on appropriate therapies before they entered the school system. Autism insurance coverage would also attract new health care jobs to North Carolina. Availability and access to board certified behavior analysts and other evidence-based autism treatment providers would grow if lawmakers require autism insurance coverage. And ultimately, autism insurance coverage would save taxpayer dollars by reducing the long-term costs of care.

The Autism Society of NC has been promoting opportunities and providing supports for North Carolinians with autism and their families for over 40 years. Every day, we hear from families about the hardships they experience from this unfair health care insurance exclusion. Along with many community partners and lawmakers, we have been working tirelessly to pass autism health insurance coverage in NC. This year, we encourage lawmakers to make it a reality.

HB 498 has already attracted 40 House sponsors from both sides of the aisle. We urge our remaining state lawmakers to join their colleagues and show their support for North Carolina families by correcting the exclusion of autism therapies from health insurance coverage.

Tracey Sheriff is CEO of the Autism Society of North Carolina at http://www.autismsociety-nc.org.

Legislation on Restraint and Seclusion

A Thursday release from TASH:

 TASH, a nonprofit advocate for inclusion and the human rights of people with significant disabilities, applauds the reintroduction of The Keeping All Students Safe Act by Rep. George Miller (D-Calif.) and calls upon members of Congress to act swiftly to pass legislation that protects students from abusive practices in schools. 

Restraint, seclusion and other aversive interventions are used in schools across the U.S. to modify the behavior or otherwise control students, frequently those with disabilities. Data released from the Department of Education show students with disabilities and students of color are at greater risk of these practices than their white peers without disabilities.

These practices cause unnecessary trauma, injury and death. If passed, The Keeping All Students Safe Act would provide a federal baseline of protections for students by limiting restraint and seclusion use in schools only to emergencies, consistent with existing federal protections in mental health, aging, and other human services. TASH supports positive, evidence-based alternatives to restraint and seclusion, including the use of positive behavioral interventions and supports and other de-escalation techniques.

“This legislation upholds the right of every student to be free from harm in school, and we thank Representative Miller for his continued leadership on the prevention of restraint and seclusion,” said Barb Trader, Executive Director of TASH. “We ask now for the rest of Congress to own up to its responsibility to protect our children by ensuring full passage of this legislation.”

Advocates have long sought federal protections for students, stemming from a 2009 Government Accountability Office report that found abusive practices were occurring in schools throughout the U.S. The GAO report asserted no federal laws exist to restrict the use of restraint and seclusion in schools, and state laws – where they exist – can vary widely.

Reps. Miller and McMorris-Rodgers (R-Wash.) first introduced a restraint and seclusion prevention bill in 2010, which was passed in the House of Representatives with bipartisan support. The Senate counterpart failed to gain traction, and subsequent attempts to move legislation have fallen short. Each passing day without federal protections against these practices puts students across the U.S. at risk of being seriously traumatized, injured or killed. It is a moral imperative that Congress act now to keep our students safe in school. 

Additional information about TASH, resources on the prevention of restraint and seclusion, and ways to become involved in advocacy to promote positive school environments can be found at www.tash.org.

Autism Speaks Praises Kids First, Heritage Raises Questions

From Autism Speaks:

House Majority Leader Eric Cantor (R-VA) has announced the introduction of the Kids First Research Act which prioritizes research funding for pediatric disorders, such as autism, in Congress.

"Autism Speaks commends Leader Cantor for making autism a national priority through the Kids First Research Act," said Autism Speaks President Liz Feld. "Cantor's intellectual leadership recognizes the urgency that thousands of families feel and experience every day. Autism is not a partisan issue and we look forward to working with leaders in Congress and the Obama Administration in crafting a national strategy to address autism."

The bill, HR.1724, is sponsored by Rep. Gregg Harper (R-MS).

Autism is the fastest growing developmental disability in the United States with 1 in every 88 children diagnosed with an autism spectrum disorder. A recent survey by the Centers for Disease Control and Prevention suggested the actual prevalence could be as high as 1 in 50.

At Heritage, however, Hans von Spakovsky and Emily Goff raise questions about the bill:

H.R. 1724, the Kids First Research Act of 2013, sponsored by Representative Gregg Harper (R–MS), would end the Presidential Election Campaign Fund (PECF). That’s the good news. But then the bill would authorize spending existing PECF funds on a new 10-year pediatric research initiative via the National Institutes of Health (NIH).
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[U]nder H.R. 1724, Congress would divert funds that taxpayers understood would be spent on presidential elections to pay for new program spending elsewhere. The FEC goes to great lengths to explain the public financing program to U.S. taxpayers, including how the money can and cannot be spent. NIH research grants don’t make the cut.

Further, the funding source for this new program would end when the check-off program ends, leaving a question mark for the new NIH program once the accumulated funds ($232 million in 2012, according to the FEC) have been spent. It would open the door for potentially higher spending on NIH grants in the future. Sure, Congress is operating under spending caps now, but why add new programs when Congress is trying to cut spending?

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