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.