ADA Lawsuit Involving High School Football Player with ASD

An earlier post discussed a high school football player with  ASD as an example of "the dilemma of difference." In Parsippany, NJ, The Daily Record reports:

The parents of a Brick Township High School placekicker with multi-symptom autism and other developmental disabilities filed a federal lawsuit today alleging the New Jersey State Interscholastic Athletics Association violated their son’s civil rights by denying him a fifth year of eligibility.

The complaint against the NJSIAA, filed in U.S. District Court for the District of New Jersey in Trenton, claims Anthony Starego is entitled to play football this fall under the federal Americans with Disability [sic] Act (ADA), which states in part that reasonable accommodations must be made to include those with disabilities in interscholastic competition.
...
Starego’s attorney, Gary S. Mayerson, is the founding partner of New York City-based Mayerson & Associates, established 13 years ago as the nation’s first law firm dedicated to representing children and adolescents with autism spectrum disorders and related developmental disabilities.
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A non-graded student with an Individualized Education Program (IEP) that addresses football, according to the Strarego family, Strarego is not enrolled in a particular grade. He is entitled under federal law until age 21 to a free and appropriate public education including non-academic and extracurricular services.

The complaint says Starego deserves special treatment through a limited one-year waiver as a reasonable accommodation under the ADA because he is an IEP student with a disability who would not otherwise be eligible to compete this fall.

Citing a 2001 U.S. Supreme Court ruling that the PGA Tour could not lawfully deny disabled golfer Casey Martin the option to ride in a golf cart between shots, the complaint and petition also allege that the NJSIAA failed, as mandated by the high court’s decision, to consider Starego’s personal circumstances in deciding whether to accommodate his disability.

Campaign Against Restraint and Seclusion

Disability Scoop reports:

Organizers of the new effort known as “Stop Hurting Kids” say they hope to raise public awareness of the dangerous consequences often resulting from the use of restraint and seclusion techniques in the classroom.

They are also looking to spur a grassroots movement by asking supporters to sign up and take a series of weekly actions to learn about restraint and seclusion, advocate for policy change and share their stories, according to Jonathan Riethmaier of TASH, one of over two-dozen disability advocacy groups backing the new campaign.

Other partner organizations include The Arc, the National Down Syndrome Society, the National Disability Rights Network and the Autism Society.

At a kickoff event Thursday evening in Washington, organizers plan to unveil a 27-minute documentary featuring individuals who experienced restraint and seclusion at school and their parents. Speakers at the event — which will be streamed online — are expected to include Michael Yudin, who heads the Office of Special Education and Rehabilitative Services at the U.S. Department of Education, as well as Larke Huang of the Substance Abuse and Mental Health Services Administration.

The film — which will be freely available on the campaign’s website following the premiere — was created by Dan Habib of the University of New Hampshire’s Institute on Disability.

Legislation to Fix NY's ABA Mess

Previous posts have discussed a mess created by New York State's Department of Financial Services.  Autism Speaks reports on a possible fix:

Autism Speaks announced today that it is working with two of its New York champions, Assemblyman Joseph Morelle and Senator Chuck Fuschillo, on legislation that would end delays families have encountered accessing insurance coverage for ABA treatment.

The bills, S.4862 and A.6963, would create a state licensing process for Board Certified Behavior Analysts (BCBAs). After New York's 2011 autism insurance reform law was enacted, the state Department of Financial Services required licensure in order for BCBA's to be reimbursed. Because New York has no BCBA license, families whose health plans were covered under the new law discovered they were unable to access care.

"Autism Speaks commends Assemblyman Morelle and Senator Fuschillo for again fighting for our community to ensure families get the benefits the 2011 law intended," said Judith Ursitti, Autism Speaks' director of state government affairs. "We look forward to quick action by the Legislature to get this issue resolved."

TV Report on Adults with Autism

WDTV in Bridgeport, WV, reports:

5 News has broken down autism for you by by teaching you the background, introducing you to a family, and telling you how children with autism learn. But what happens when these young people grow up?

The truth is right now, there isn't much out there for adults on the autism spectrum.

 "When you go to the therapy session they're young kids, but you won't see 25-year-olds," said Brad Ford, Parent to a child with autism.

But why is that?

"There's a lot of attention given to children because the syndrome is really diagnosed in those first three years but there are a lot more adults who are autistic than there are children," said Dr. Bob Williams, Director of Behavioral Health Services at United Hospital Center and the Executive Director at the United Summit Center.

 

Autism Fear is Not the Main Reason for Undervaccination

At Mother Jones Kiera Jones notes that fear of autism does deter some parents from vaccinating their children.

Yet the vaccine resisters and delayers are not the only parents whose kids miss out on shots. Far more children are undervaccinated for reasons unrelated to personal beliefs, according to a January 2013 study funded by the Centers for Disease Control and Prevention (CDC).

The study found that an astonishing 49 percent of toddlers born from 2004 through 2008 hadn't had all their shots by their second birthday, but only about 2 percent had parents who refused to have them vaccinated. They were missing shots for pretty mundane reasons—parents' work schedules, transportation problems, insurance hiccups. An earlier CDC study concluded that children in poor communities were more likely to miss their shots than those in wealthier neighborhoods, and while that may not be too surprising, it's still a dangerous pattern. "If you're going to delay one or two vaccines, it's not going to make a huge difference," says the new study's lead author, Jason Glanz, an epidemiologist at the Kaiser Permanente Colorado Institute for Health Research. "But you could also think of it like this: If a million kids delay their vaccines by a month, that's time during which a disease could spread."

Problems with DSM-5 Definition

Allen Frances was lead editor of DSM-IV and blames himself for diagnostic problems that ensued.

At The Huffington Post, Frances identifies two major flaws in the DSM-5 definition of Autistic Spectrum Disorder:

A truncated version of its Criterion A reads as follows: 

"A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following...
1. Deficits in social-emotional reciprocity;
2. Deficits in nonverbal communicative behaviors used for social interaction;
3. Deficits in developing, maintaining, and understanding relationships."

The DSM 5 examples offered for each of these three items are vague enough to overlap into normality, but I wouldn't have made a big fuss about this.

The really fatal flaw here is that no instructions are given as to whether one item, two items, or all three items must be present to make the diagnosis of Autism Spectrum Disorder. The diagnosis will vary dramatically from rater to rater, institution to institution, and place to place depending on which of these three different possible convention is chosen. It will be even more impossible than it is now to determine rates of autism and why they shift so much over time.

The second fatal flaw comes in the following statement attached to the end of the criteria set for Autism Spectrum Disorder:

"Note: Individuals with a well established DSM-IV diagnosis of autistic disorder, Asperger's disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social communication disorder. "

This throws wide open to raters the choice of using DSM-IV criteria or DSM-5 criteria depending on their personal preferences.

The Demographics of Identifying Autism

PsychCentral reports:

The rate of autism in children of all races is on the rise; however, students who are black, Hispanic, or American Indian are less likely to be identified with an autism spectrum disorder compared to white and Asian students. This is according to a new study published in The Journal of Special Education.

In the study, researchers figured out a risk index — a percentage of all enrolled students from a racial group with a specific disability. The index was based on data collected by the federal government from 1998 to 2006 regarding students in special education.

The overall risk of being categorized as having autism increased for all racial groups over that time period, from 0.09 percent to 0.37 percent.

The abstract:

A Multiyear National Profile of Racial Disparity in Autism Identification
Jason C. Travers, PhD, BCBA-D1  Matt Tincani, PhD, BCBA-D2 Michael P. Krezmien, PhD1

Disproportionate representation of racially diverse students in special education is a well-documented problem, yet few studies have systematically evaluated disproportionate representation of diverse students with autism. This study examined disproportionate representation of racially diverse students with autism by determining risk and logistical odds ratios among racially diverse and White students from the national population between 1998 and 2006. Although overall risk of autism increased for all racial groups every year, White students were twice as likely to be identified with autism as Hispanic and American Indian/Alaskan Native students during most years of the sample. Although initially overrepresented, the odds ratios for Asian/Pacific Islander and Black students with autism continuously declined in recent years. Hispanic and American Indian/Alaskan Native students were significantly underrepresented every year in the analysis. Potential cause and implications of underrepresentation are described, along with directions for research.

TRICARE Dud

A release from Autism Speaks:

Autism Speaks today expressed disappointment with the terms of a one-year ABA pilot program for military families developed by the Department of Defense (DoD) through TRICARE and called on Pentagon leadership to take action.

In a report sent to Congress May 7, the DoD said it was limiting the pilot ABA autism program to non-active service members only as a companion to the existing TRICARE ECHO program for active duty members. There was no indication when the program will start.

Late last year, Congress ordered the DoD to create the pilot program for "all TRICARE beneficiaries," but the DoD instead has limited the program to non-active duty members covered under TRICARE Basic. No insight was offered on dollar caps for treatment, coverage for prescribed levels of care, when the program will become available, or how military families or ABA providers will be advised of the services.

Autism, Asperger, and DSM-5

Amy S.F. Lutz writes at Slate:

Only a few studies have evaluated whether the DSM-5 criteria will prove more or less exclusionary, and they have been inconsistent, to put it mildly. Judith Ursitti, mother of two children on the spectrum and the director of state and government affairs for Autism Speaks, points to one study by APA task force member Lord suggesting that only about 10 percent of individuals currently diagnosed would not meet DSM-5 criteria; a study by Fred Volkmar, director of the Child Study Center at the Yale School of Medicine, however, found that a staggering 75 percent of those with Asperger’s and 85 percent of those with PDD-NOS would fail to meet the new requirements. “If it plays out the way the APA says it’s going to, it should be fine. It should just be a name change,” Ursitti says. But Autism Speaks isn’t taking the APA’s word for it. The organization is funding a study with the Centers for Disease Control and Prevention to assess the impact of the new criteria, and it has also already designed two online surveys so families, teachers, doctors, and other providers can report their experiences.

Previous posts have discussed Asperger's as an identity.  Lutz continues:

It’s not only the fear of losing diagnoses that has parents and diagnosed individuals challenging the APA. Some say that the word autism carries a greater stigma, which may keep high-functioning individuals and their families from pursuing a diagnosis and the support that comes with it. As high-school senior Hannah Fjeldsted, who has Asperger’s, articulated clearly (if a bit insensitively) in a guest blog post at Autism Speaks, “The label of Asperger’s at least gives observers the impression of intelligence and ability. But when most people think of ‘autism,’ they think of someone who should be institutionalized.” Hibben also expresses concern over whether his son will embrace his diagnosis when he’s a teenager. “Now it’s almost cool to have Asperger’s,” he points out. “The Big-Bang Theory and Parenthood feature characters who have it.”

Previous posts have also discussed pushback from parents of lower-functioning kids.  

Parents of lower-functioning kids are also concerned about how the influx of high-functioning individuals will affect the public’s perception of autism—mainly because they feel autism is a serious disorder that people should associate with profound disability. One mother commented online that “the proposed DSM change would diminish the enormity of the challenges that those with moderate to severe autism have.” Ursitti, who has a daughter with Asperger’s and a son with severe autism, feels this is already happening: “If we have this national perspective that autism is a blessing, that it’s not a crisis, the ones who will lose out are the expensive ones, the severe ones. Legislators focus on the cheapest option, and celebration is cheaper than treatment.”

California Legislation: Self-Determination

At California's State Capitol in Sacramento, advocates for the disabled rallied for a legislative agenda including restoration of state budget cuts.  At the Sacramento Bee, Jim Sanders reports:

To kick off the event, speakers exhorted hundreds of participants gathered near the Capitol's west steps to chant, "We're here, we're loud, we're disabled and we're proud."

"They certainly hear us, but that doesn't always mean they make the decisions we want them to make," Teresa Favuzzi, director of the California Foundation For Independent Living Centers, said of lawmakers who are weighing a revised state budget proposal unveiled by Gov. Jerry Brown this month.

The 10th annual "Disability Capitol Action Day" hoped to attract 3,000 people. Lobbying inside the Capitol was planned after the speeches and sign-waving ended. Sponsors included more than a dozen labor union, disability rights and retail groups

The article lists a variety of bills affecting Californians with disabilities, including SB 468.  From The Autism Society of Los Angeles:

The Autism Society of Los Angeles along with Disabilities Rights California are sponsoring California Senate Bill No. 468: Self-Determination Program for Individuals with Developmental Disabilities

Click here to view the content of Senate Bill No. 468. Use this link to determine your State Senate and Assembly representatives.

Introduced and supported by Senators Emmerson and Beall, this bill would allow individuals with developmental disabilities (with the support of family, friends, and professionals) to take charge of their future by gaining control over the services, supports and resources they need to reach their life goals. Learn more.

What is self-determination?

Self-determination provides an alternative to the traditional method of providing regional center services to consumers.

Self-determination helps individuals with developmental disabilities gain a life that:

• Respects their own choices and fulfills their hopes and dreams.
• Fosters independence while encouraging interdependence.
• Allows them to choose services and supports that are not bound by what is currently available.
• Reaches farther than meeting basic needs and toward creating a meaningful life.
• Has services and supports based on their changing needs.
• Is not unique to individuals with disabilities.

Has California ever had a self-determination program?

Yes. In 1998, the California Legislature (SB 1038) amended the Lanterman Act to include a Self-Determination Pilot Project. The highly successful program was piloted in five regional centers across California and included 200 participants. The program continues to exist for the original pilot participants as long as they choose self-determination. This legislation will offer the self-determination program to consumers throughout the state.

The Society has a call to action:

Urgent action needed:

The Autism Society of Los Angeles is the sponsor of SB 468 on Self Determination. This bill, if passed, will allow clients of the Regional Centers the ability to choose their own services and support.

Currently the bill is stuck in appropriations, and the only way to get it out of the Suspense file is for people to make phone calls TODAY!!!

Please call Darrell Steinberg's office at (916) 651-4006

If we can generate enough calls the committee can decide to take it out of suspense. If this does not happen today the bill will die. This bill if passed will have significant impact on families and adults with autism.

Call Senator Steinberg today! (916) 651-4006.

For more information on SB 468, click here: SB 468 FAQ's

Bryce's Law in Missouri

After eight years, a Missouri state legislator has secured passage of his autism legislation.  Missourinet reports:

Representative Dwight Scharnhorst (R-St. Louis) named Bryce’s Law for his grandson, who died in 2007 of complications related to autism and epilepsy. It would create a grant program that parents of children with an autism spectrum disorder, Down syndrome, Angelman syndrome or cerebral palsy could apply for to help cover the cost of specialized educations that meet their unique needs.

“It’s somewhat of a mandate to the Department of Elementary and Secondary Education to seek and secure federal and state, and I will be seeking on my own private foundation money, to form a pool of money for parents who decide they want to move these children out of a public school and put them in the institutions that could probably best suit improving their quality of life as well as their family.”

The bill had met resistance in earlier versions because it would have created a tax credit program for those parents, which opponents had likened to school vouchers. Scharnhorst says converting it to a grant program removed any impact it would have on state funding for public schools. He says prior to this year, the proposal had not received a positive vote in a legislative chamber.

Two years ago, Scharnhorst spoke about Bryce and an earlier version of his bill:

Autism and The Media: Two Studies

Graham N. Dixon and Christopher E. Clarke, "Heightening Uncertainty Around Certain Science:Media Coverage, False Balance, and the Autism-Vaccine Controversy," Science Communication 35 (June 2013):   358-382.

The abstract:

To investigate how balanced presentations of the autism-vaccine controversy influence judgments of vaccine risk, we randomly assigned 327 participants to news articles that presented balanced claims both for and against an autism-vaccine link, antilink claims only, prolink claims only, or unrelated information. Readers in the balanced condition were less certain that vaccines did not cause autism and more likely to believe experts were divided on the issue. The relationship between exposure to balanced coverage and certainty was mediated by the belief that medical experts are divided about a potential autism-vaccine link. We discuss theoretical and practical implications of these findings.

The conclusion:

Despite the limitations and need for further research, this study demonstrates that the ways in which journalists present evidence in support of risk viewpoints can influence peoples’ risk-related certainty. Falsely balancing risk perspectives can be troubling, as it can heighten readers’ uncertainty perceptions around certain science. For health officials, this fact can be another obstacle to effectively communicating health risk to the public for which alternative methods of communication should be considered. For journalists, it might open up important discussions on the balance norm in terms of addressing its advantages and disadvantages in providing the public with health risk information.

Brooke Weberling McKeever, "News Framing of Autism: Understanding Media Advocacy and the Combating Autism Act," Science Communication 35  (April 2013): 213-240.

The abstract:

This study explores agenda setting, framing, and the concepts of media advocacy and mobilizing information through content analysis of The New York Times and The Washington Post news coverage of autism from 1996 to 2006, the year the Combating Autism Act was passed. Findings revealed that science frames decreased over time, while policy frames increased. Medical, government, family, and nonprofit sources were most common in news coverage. Solutions were mentioned more frequently than causes; however, mobilizing information was limited. Theoretical implications and practical applications are discussed.

From the conclusion:

The sources included in autism news coverage seem appropriate when one considers the issue.  Science/medical and government sources are often deemed “experts” by the media and are therefore sought after for inclusion in health news. Sources that provide information freely and/or frequently in a format that audiences might find easily digestible are especially likely to be included in media coverage about scientific topics (Conrad, 1999; Len-Ríos et al., 2009; Tanner & Friedman, 2011). Additionally, many families were included as sources in news coverage of autism. As Boyce (2006) noted, families could be considered the real “experts” when it comes to an issue such as autism, and it seems that at least some U.S. newspaper reporters saw them as such and included them in coverage accordingly. However, individuals with autism, who could also be considered experts, were included in only 14% of articles; these are some of the “ordinary voices” that Boyce (2006) noted seem to be missing in autism news coverage. While nonprofit organizations were included in a fairly substantial proportion of articles (35%), they made up only 11% of total sources. This could reflect the limited number of autism nonprofits that existed or made themselves known to media at the time, which could be evidence of the need or opportunity for greater media advocacy efforts on the part of nonprofit organizations. Alternatively, there could be reluctance on the part of journalists to rely on nonprofit organizations as sources for an issue such as autism. The spike in nonprofit sources included in news coverage in 1998-1999 coincides with media coverage of the Wakefield et al. (1998) study and controversy surrounding the autismvaccine link. It could be that nonprofit organizations became more willing to speak with media during this time, while government and science/medical responses may have been lacking as the controversy emerged and was sorted out, as one recent article suggested (Holton et al., 2012).

 Boyce, T. (2006). Journalism and expertise. Journalism Studies, 7, 889-906.

Holton, A., Weberling, B., Clarke, C. E., & Smith, M. J. (2012). The blame frame: Media attribution of culpability about the MMR-autism vaccination scare. Health Communication. Advance online publication. 

Texas Lifts Age Cap

From Autism Speaks:

The Texas House of Representatives approved and sent Gov. Rick Perry a bill that would eliminate age caps for receiving autism insurance benefits. Perry signed the 2007 bill that made Texas just the third state nationally to enact autism insurance reform, then a second bill in 2009 that raised the age cap from 5 to 9.

The current law requires state-regulated health plans to cover the diagnosis and treatment of autism, including behavioral health treatment, such as Applied Behavior Analysis (ABA), as well as speech, occupational and physical therapy.

Sponsored by Senators Kirk Watson of Austin, Wendy Davis of Forth Worth and Eddie Lucio, Jr. of Brownsville, SB.1484 would take effect in September and limit annual ABA benefits to $36,000 for children aged 10 and above. Children must be diagnosed with autism by the age of 10 to gain the coverage.

The House champions for the bill included Rep. Larry Gonzales of Round Rock, Rep. Ron Simmons of Carrollton, and Rep. Senfronia Thompson of Houston.

Texas is one of four states with existing autism insurance reform laws that has considered bills to expand coverage this year. A fifth state, New Mexico, has already enacted a new law expanding its coverage to public employees. Last year, Louisana, Vermont, Virginia and Rhode Island all took action to expand coverage under their existing laws.

The Minnesota Legislature has sent Gov. Mark Dayton a bill that would make Minnesota the 33rd state to enact autism insurance reform. Dayton is expected to sign the bill shortly.

A Housing Problem

In Lake Charles, Louisiana, KPLC reports on the housing problems of ASD adults:


KPLC 7 News, Lake Charles, Louisiana

Ads Aiming at Hispanic and African American Parents

The New York Times reports:

AUTISM Speaks, the autism and science advocacy organization, this week is introducing a new public service advertising campaign aimed at Hispanic and African-American parents.

An ad in the campaign showing parents observing a child with the early warning signs of autism, a developmental disorder.

The campaign, developed with the Advertising Council, which has worked with Autism Speaks since 2005, was created by the New York office of BBDO and LatinWorks of Austin, Tex., both part of the Omnicom Group. The campaign describes early signs of autism in detail and encourages parents to take immediate action if their child does not meet standard developmental milestones.

The new campaign is geared specifically at Hispanic and African-American parents because, according to the Centers for Disease Control and Prevention, the current age of diagnosis among these groups, as well as among low-income families, is higher than that of the general public. According to the C.D.C., although the average age now of diagnosis in the United States is 4 to 5 years, a reliable diagnosis can be made as early as 18 to 24 months. And if the disorder is treated from the ages of 3 to 5, from 20 percent to 50 percent of children with autism will be able to attend mainstream kindergarten, according to studies by The Journal of Consulting and Clinical Psychology and The Journal of Autism and Developmental Disorders.

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."
...

"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.
...
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.
...

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.
...
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.
...
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.”
...
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.
...
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.
...
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).
...
[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?

.

Class-Action Insurance Lawsuit in Oregon

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

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

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

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

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

KGW in Portland covers the same story:




The Portland Business Journal adds some details:

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

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

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

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

Boys, Girls, and Autism

The Wall Street Journal reports:

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

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

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

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

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

OPM Seeks More ABA Coverage

Autism Speaks reports:

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

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

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

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

The text of the letter is here.

Transforming Diagnosis

At the NIMH blog, Thomas Insel writes:

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

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

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

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

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

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

Rising Prevalence of Disability Among Kids

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

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

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

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

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

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

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

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

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

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

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