Disparities

African American and Hispanic kids get diagnoses or educational determinations of autism at lower rates than white kids. At Heartland Health Monitor, Alex Smith cites recent work by Jason Travers and quotes David Mandell.

Most of what’s known about autism disparities comes from health data or projections based on sample groups. By looking at individual numbers from individual schools, Travers’ study underscores how Hispanic and African-American students are missing out on services to which they are legally entitled.

Mandell hopes the new findings will serve as a call to arms.

“For a long time, advocacy around autism has really been led by very well-meaning, very effective, relatively wealthy or privileged individuals. And I think that this suggests an urgent need to engage other families in this battle to obtain appropriate care for children with autism,” he says.

After finishing his snack, Wendy Santillan’s son [Raoul, of Kansas City, KS] grabs his mother’s smart phone. Wendy was lucky; she found help for Raoul through Oasis, a University of Kansas training program for parents of autistic children geared toward families living in rural or remote areas.

Raoul is doing well. Defying stereotypical autism behavior, he smiles and seems to enjoy playing with his mother. But Wendy says she gets nervous thinking about his future and what will happen when he starts grade school.

“I don’t know what’s coming next, you know?” she says. “I don’t know if there’s public resources or if I’m going to have to put him in private. I don’t know. I have no idea what’s next. And it’s a worry. Of course it’s a worry, as a parent.”

Wendy still encounters hostility from some Hispanic parents when she suggests their children may have symptoms of autism. So she’s not only doing all she can to educate herself about the disorder; she’s working to educate other families in her community as well.

Due Process and Mediation

Meghan M. Burke, Samantha E. Goldman have an article in The Journal of Autism and Developmental Disorders titled "Identifying the Associated Factors of Mediation and Due Process in Families of Students with Autism Spectrum Disorder."   They cite previous studies showing that families with an ASD child are more likely to push back than those of children with other disabilities. There are also differences among the families with ASD children. An excerpt:

First, families who advocated more and had weak  family-school partnerships were significantly more likely to file for due process or mediation (p’s\.0001). Because one piece of advocacy is understanding special education law (Trainor 2010), including conflict resolution procedures, parents who advocate more frequently may be more  likely to know about mediation and due process and, because of their knowledge, more likely to utilize these procedures. In addition, poor family-school partnerships may increase the likelihood of conflict because the parent and the school do not trust each other (Fish 2008). Conversely, family-school partnerships may deteriorate after a family files for due process (Mueller 2009).

Second, child characteristics also significantly related to the use of procedural safeguards. Compared to students who spent a large majority of their day in the general education classroom, families of students who were included for only 0–20 % of their time were 1.92 times more likely to enact their safeguards. This finding aligns with previous research indicating that placement is a common issue in due process hearings among families of students with ASD (Mueller and Carranza 2011). Our data indicates that families may be arguing for more inclusive settings. Parents of children with ASD who spend most of their time in self-contained classrooms may have greater concerns about their child’s quality of instruction and staff (Ryndak and Downing 1996). Child age also related to the enactment of safeguards with parents of older students being significantly more likely to file mediation or due process. Given that family-centeredness decreases with age (Dunst 2002), parents of older students may be more likely to use safeguards.
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Third, parent characteristics also related to the usage of procedural safeguards. Families with greater incomes were significantly more likely to file due process or mediation. Given the high costs of hearings (Mueller 2009), families with more money may be better positioned to file for due process. However, the issue of income may represent a larger challenge of access and for whom due process and mediation can be viable conflict resolution procedures. Being unable to afford attorney representation or secure legal advocacy services, families from lower income backgrounds may feel that due process is not an equitable process (Shemberg 1997).

• Dunst, C. J. (2002). Family-centered practices: Birth through high school. Journal of Special Education, 36, 139–147.
• Fish, W. W. (2008). The IEP meeting: Perceptions of parents of students who receive special education services. Preventing School Failure, 53, 8–14.
• Mueller, T. G. (2009). Alternative dispute resolution: A new agenda for special education policy. Journal of Disability Policy Studies, 20, 4–13.
• Mueller, T. G., & Carranza, F. (2011). An examination of special education due process hearings. Journal of Disability Policy Studies, 22, 131–139.
• Ryndak, D. L., & Downing, J. E. (1996). Parents’ perceptions of educational settings and services for children with moderate or severe disabilities. Remedial and Special Education, 17, 106–118.
• Shemberg, A. (1997). Mediation as an alternative method of dispute resolution for the Individuals with Disabilities Education Act: A just proposal? Ohio State Journal on Dispute Resolution, 12,739–757.
• Trainor, A. A. (2010). Diverse approaches to parent advocacy during special education home-school interactions: Identification and use of cultural and social capital. Remedial and Special education, 31, 34–47.

Obama Signs ABLE Act

A release from Representative Ander Crenshaw:

Congressman Ander Crenshaw, author of the Achieving a Better Life Experience Act (ABLE Act), announced today (12/19) that President Barack Obama has signed his legislation into law. The action caps more than eight years of teamwork to create tax-free savings accounts for millions living with disabilities. These Americans and their families will now have the same financial planning tool available to others as they reach for every possible piece of the American dream.

Crenshaw, House-side author of the ABLE Act, who first introduced seed legislation to create ABLE accounts in 2006, issued the following statement:

“The ABLE Act is now law of the land, and a brighter future opens to millions of individuals living with disabilities. I am privileged to have been in a position to guide this reform from an idea into a law and never doubted we would reach our goal. Credit goes to fantastic teamwork from House and Senate Members on both sides of the political aisle and determination from hundreds of advocacy groups across the nation. Their focus and drive to educate Capitol Hill on the need for this law made a key difference.

“Positive achievements can be made by working together to improve the quality of life for those in need. The ABLE Act proves that. ABLE accounts open the door to financial peace of mind for so many. These Americans will no longer stand on the sidelines asking why can’t I use IRS-sanctioned tools to put money away for my future like others. They will be in the game and playing to win.”

BACKGROUND: Officially titled The Stephen Beck, Jr. Achieving a Better Life Experience Act of 2014, in honor of its long-time champion who passed away unexpectedly on December 8, the measure marks the first major legislative reform to impact the disabled since the 1990 passage of the Americans with Disabilities Act. Beck, of Burke, VA, had advocated for the reform early on. His young daughter Natalie was born with Down syndrome,

The law amends Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for qualified expenses. Benefits provided through private insurance, the Medicaid program, the beneficiary’s employment, and other sources would be supplemented, but not supplanted by the legislation. The bill passed the House on December 3 by a vote of 404-17 and was included Tax Extenders legislation which passed the Senate by a vote of 76 – 16. President Barack Obama signed the measure into law on Friday, December 19.

Editor’s Note: Go to www.crenshaw.house.gov for more information about the history of the ABLE Act.

A Different Path to a Diploma

Christina Samuels writes at Education Week:

Earlier this year, Louisiana lawmakers overwhelming approved a law that would permit some students with disabilities to opt out of the state's testing regime and instead follow a different path to a diploma.

However, implementing the new policy is turning out to be difficult, according to an article published Thursday in the New Orleans Advocate. The policy allows a student's individualized education program team, which is made up of parents, teachers, and administrators, to develop an alternate pathway to a diploma. But just how the teams are supposed to develop those plans has been a sticking point, the article said.

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The U.S. Department of Education has also indicated it will be taking a careful look at how the law, which was signed June 23, is implemented. In July, Michael K. Yudin, the acting assistant secretary of the Office of Special Education and Rehabilitative Services, and Deborah S. Delisle, the assistant secretary of the Office of Elementary and Secondary Education, sent a letter to White that outlined all the ways the policy could run afoul of the Individuals with Disabilities Education Act and the Elementary and Secondary Education Act (also known as No Child Left Behind Act).

For example, the ESEA requires that all students be given access to challenging academic and achievement standards, and the entity tasked with creating those standards is the state department of education. "To the extent the [new law] permits IEP teams to set different academic standards for some students with disabilities, those actions would violate the ESEA," the letter said. Creating a different, and potentially lower, standard for students in special education may also violate their right to a free, appropriate education under the IDEA.

Research Priorities

At Technology Review, John Elder Robison writes:

We’re sinking millions into the search for a “cure,” even though we now know that autism is not a disease but rather a neurological difference, one that cripples some of us while bringing a few others extraordinary gifts. Most of us live with a mix of exceptionality and disability. I know I do.

Research into the genetic and biological foundations of autism is surely worthwhile, but it’s a long-term game (see “Solving the Autism Puzzle”). The time from discovery to deployment of an approved therapy is measured in decades, while the autism community needs help right away.

If we accept that autistic people are neurologically different rather than sick, the research goal changes from finding a cure to helping us achieve our best quality of life.
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We can make life better for the autistic people who have major cognitive and functional challenges that today’s science can’t fix. We have a duty to make their lives better through applied technology. We owe it to our most disabled brothers and sisters to do all we can to ensure their security, safety, and comfort.

So how might this change in research direction come about? For one thing, we can put autistic people in charge. The fact is, researchers have treated autism as a childhood disability, when in fact it’s a lifelong difference. If childhood is a quarter of the life span, then three-quarters of the autistic population are adults. Doesn’t it make sense that some of us would want to take a role in shaping the course of research that affects us?

Police Training

AP reports:

Scott Schuelke, who has 25 years' worth of law enforcement experience, has trained close to 10,000 people at 300 training seminars across the state [Michigan] and country in the past three years. His seminars are designed to provide details to police, firefighters and other first responders about the group of developmental disabilities that can involve language and social impairments and unusual, repetitious behaviors.

"We're teaching (first-responders) how to communicate, how to interact, how to work with a family member or care provider," said Schuelke, a retired Lansing police sergeant who now works as an autism safety specialist with the Autism Alliance of Michigan.

Mark Boody, a police sergeant in the Detroit suburb of Novi, Michigan, who has attended Schuelke's seminars, wishes he'd known earlier what he now knows about the disorder.

"After the training, thinking back, 'Wow. I bet that person (I encountered) could be someone with autism,'" Boody said. "Now, knowing that ahead of time, we're just not going to automatically assume the negative."

Senate Passes ABLE Act

Jonathan Tamari writes at The Philadelphia Inquirer:

An unusual thing happened in Congress this month: The Senate and the House each passed legislation likely to create a law, with massive bipartisan support.

Sen. Robert P. Casey (D., Pa.), a sponsor of the bill, wound up on the same side as House Speaker John Boehner, the top Republican in Congress.

The beneficiaries of this cooperation: families facing the lifelong costs of disabling illnesses such as epilepsy or Down syndrome.

If President Obama signs the bill, people with disabilities and their families would soon have the option of creating tax-sheltered savings accounts to help pay for long-term care.

The feel-good moment was five years coming for Casey, who sponsored the Senate version of the so-called ABLE Act, for "Achieving a Better Life Experience."

The measure was rolled into a package that would renew other tax policies and approved Tuesday night by the Senate, 76-16. It passed the House on its own earlier in December.

"It allows children to lead a full life, and it gives their parents peace of mind," Casey said in a recent interview. The bill builds on similar savings accounts that already exist for education or retirement. "It's not some new theory. It works and it makes sense, and that's one of the reasons why you had such broad bipartisan support."

Some have hailed the measure as the first major bill aimed at helping the disabled since 1990's Americans With Disabilities Act.

The Senate and the ABLE Act

The Senate will vote shortly on the ABLE Act, which has passed the House.

Senator John Thune (R-SD):



Senator Richard Burr (R-NC):

Doctors Who Agree to Vaccine Exemptions

At The Boston Globe, Chelsea Rice writes of pediatricians who will agree to vaccine exemptions.  There are Internet lists of such doctors.

The majority of the pediatricians we spoke with on these and other “vaccine-friendly” doctor lists said that they do think vaccinations are important for public health, but they just can’t convince fearful parents of this, despite the fact that thousands of children are vaccinated every day without a problem.

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Today, physicians ask to be listed on [Dr. Bob] Sears’s website of vaccine-friendly physicians. One of those is Dr. Mark Su, who has been practicing family medicine for three years on the North Shore. He refuses to turn families away because they won’t vaccinate their children.

“It’s a difficult conflict because it’s a personal health choice coming up against a public health perspective,” Su said. “In this case personal choices do affect public health of the public at large. It is what it is. My personal practice style is I’m an individual patient advocate more than I am for the public as a whole.”

Su said a much stronger priority for him than convincing vaccine-averse parents to change their minds is to maintain and build strong relationships with patients and their families that might serve both parties later on.

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But for Seth Mnookin, author of “The Panic Virus: The True Story Behind the Vaccine-Autism Controversy,” a physician who supports a parent’s decision not to vaccinate his child puts the rest of us at risk. Mnookin said he understands the argument against turning a family away, since it’s not the child’s fault that his or her parents are hesitant about vaccines. But it also creates a risk for the other patients in the practice.

“Obviously because pediatricians see kids from birth to their teenage years to beyond, when you have kids that aren’t vaccinated in a practice, that puts everyone else in the practice at risk. Children who are too young to be vaccinated are exposed in the waiting room,” he said.

Transitions: Higher Education and Health Care

Valérie Van Hees, Tinneke Moyson, Herbert Roeyers have an article in The Journal of Autism and Developmental Disorders titled "Higher Education Experiences of Students with Autism Spectrum Disorder: Challenges, Benefits and Support Needs." Thee study took place in Flanders, Belgium, but the reactions are universal.  The abstract:

The transition into higher education constitutes a precarious life stage for students with autism spectrum disorder (ASD). Research on how students with ASD navigate college life is needed for the development of adequate support. This study investigated the challenges and support needs of 23 students with ASD in higher education through semi-structured interviews. Data were analyzed following the principles of Grounded Theory. Students faced difficulties with new situations and unexpected changes, social relationships, problems with information processing and time management and had doubts about disclosure. Facing these challenges simultaneously in the domains of education, student life and daily (independent) living, had a major impact on students’ well being. Besides these challenges, students also reported benefits that contributed to success in the three domains. They pointed out to a set of recommendations for support. These findings are linked with previous research and implications for higher education institutions are extrapolated on the basis of these findings.

This quotation from a student points out the dilemma for parents -- worldwide -- who have been scrupulous in providing structure for their ASD kids.

I think starting working later on could be a problem. I have always lived in a structure that was provided for me by others: infant school, elementary and secondary school, even in higher education. But after graduation, what will happen then? There will be no such structure. At that point everything will be new then, and open. I will have to organize my own life. That really frightens me. I could try to excel now and be a high performer at university. But once I will have finished my education, I fear that I will not know how to organize my life, and will end up with the beggars in the railway station. (David, aged 19, university)

Nancy C Cheak-Zamora and Michelle Teti have an article in Autism titled “`You Think It’s Hard Now … It Gets Much Harder For Our Children': Youth With Autism And Their Caregiver’s Perspectives Of Health Care Transition Services." The abstract:

Adolescents with Autism Spectrum Disorder diagnosis often have complex comorbid physical and mental health conditions. These youth rely heavily on their medical providers and struggle through the often rocky transition out of pediatric care into adulthood and adult-centered care. This study is among the first to qualitatively examine the health care transition experiences of youth with Autism Spectrum Disorder and their caregivers. We conducted four focus groups with youth with Autism Spectrum Disorder (n = 13) and their caregivers (n = 19) and used thematic analysis strategies to identify key themes. Parents’ discussions emphasized (a) loss of relationship with provider and lack of support transitioning from pediatric to adult care, (b) providers’ lack of knowledge about Autism Spectrum Disorder, and (c) concerns about losing guardianship. Youth emphasized their confusion and anxiety around (a) medical providers’ role, especially in the transition to adulthood; and (b) managing their medical lives independently. Our findings are important because they not only improve our understanding of health care transition needs among youth with Autism Spectrum Disorder and their caregivers but demonstrate a sound methodological procedure to facilitate input from youth with Autism Spectrum Disorder.

This quotation from a parent inspired the title:

You think it’s hard now … It gets much, much harder for our children [after they turn 18] … They won’t even give you an idea who this next doctor is because they don’t know until your child is 18 … Our child had no chance to meet this person, no chance in a safe environment with their old doctor to get comfortable with the [new] doctor. Unfortunately [healthcare] kind of really sucks for our children.

Disability Funding

Michelle Diament reports at Disability Scoop that most federal programs will at least break even  under the $1.1 trillion budget deal moving through Congress.

The plan was approved by the U.S. House of Representatives late Thursday, as the federal government’s existing budget was set to expire at midnight. Lawmakers also passed a temporary measure to give the U.S. Senate time to vote on the legislation that would fund most federal activities through Sept. 30, 2015.

Following years of belt-tightening in Washington, advocates say that just maintaining steady funding for disability programs offers some relief.

“Most of the programs that we track that support people with disabilities got level funding which we continue to say in this environment is a victory,” said Jennifer Dexter, assistant vice president of government relations at Easter Seals.

Under the deal, funding available to states under the Individuals with Disabilities Education Act will rise $25 million and vocational rehabilitation will increase $33 million. Other programs expected to see an increase include housing assistance, support for postsecondary programs for those with intellectual disabilities as well as autism and developmental disabilities efforts at the Centers for Disease Control and Prevention.

Vaccine Update

Philip Reese writes at The Sacramento Bee:

More California kindergartners are getting their vaccinations before starting school, curbing a decadelong trend of falling immunization rates, new state figures show.

The shift comes as California experiences one of its worst whooping-cough outbreaks in generations. Health experts said several prior years of lax immunization primed the state for such an outbreak.

This year’s rise in vaccination rates corresponds to the introduction of a new “personal belief” form that must be completed by parents who don’t want to immunize their children. The result of a new state law, the form must be signed by a doctor who acknowledges telling parents about the risks and benefits of vaccinations; alternatively, parents can state that visiting a doctor violates their religious beliefs. The new form replaces a document that did not require a doctor’s signature.

Read more here: http://www.sacbee.com/news/local/education/article4398622.html#storylink=cpy

The Detroit Free Press reports:

Parents who refuse vaccinations for their children because of philosophical or religious reasons will have to take another step now under a new policy by the Michigan Department of Community Health.

Starting Jan. 1, they must have their waivers certified by the local health department.

The new rule "will help ensure that those who may choose to sign a waiver have accurate information and education" about the risks and benefits of vaccines, Jennifer Smith, spokeswoman for the Michigan Department of Community Health, said in an e-mail.

The change in the department's administrative rules comes as two northern Michigan counties — Grand Traverse and Leelanau — have reported five cases of measles, a disease that in 2000 was deemed eliminated from the U.S.

Susan J. Demas writes at MLive that Michigan has the fourth-highest rate nationally of parents declining vaccinations.

But it gets even worse. Thanks to exhaustive reporting from MLive, we now know almost half of people in Michigan (44 percent) live in counties with kindergarten vaccination rates below the level needed for "herd immunity" -- encompassing 800 schools.

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Vaccinations are safe and studies claiming otherwise have been roundly discreditedby the medical community.

And yet, anti-vax sites dominate top search-engine hits, competing with the Centers for Disease Control as information sources.

Terrified parents, already subjected to endless articles that they're not feeding their kids or disciplining them right, now see they could kill their babies with shots.

That nice lady from "The View" said her son got autism afterward, so it could happen, right?

The internet age means we're all experts, so as Tom Nichols argues in The Federalist, no one is really an expert anymore. Certainly not needle-wielding doctors who haven't seen fraudulent late-night informercials on deadly vaccines.

More information, quite frustratingly, only makes anti-vaxxers more resolute.

We can't give up trying to change things -- it's imperative for public health that we don't. But it means this problem is more insidious that we may think.

At The Atlantic, Carl Romm writes of a study of attitudes toward flu vaccines:

The study built on previous research from [Brendan] Nyhan and Exeter University’s Jason Reifler, published earlier this year in the journal Pediatrics, that found a nearly identical effect when parents were exposed to information about the measles-mumps-rubella (MMR) vaccine. After reading that the MMR vaccine wasn’t dangerous to their children, the Pediatrics study found, the most concerned parents were less likely that before to say they would vaccinate their children.

Both political scientists, Nyhan and Reifler have spent the past several years studying what they call the “backfire effect,” or the idea that when presented with information that contradicts their closely-held beliefs, people will becomemore convinced, not less, that they’re in the right. In one study, when staunch conservatives read information refuting the idea that the U.S. found weapons of mass destruction in Iraq, they tended to believe more firmly than before that it was true; the researchers saw similar effects in studies correcting the notion thatPresident Obama is Muslim and the claim that “death panels” were a part of healthcare reform.

From there, vaccination seemed like a logical next step in their research, Nyhan said:

“Vaccines aren’t a partisan or ideological issue, but they’re controversial. They bring up issues of identity and tribalism that feel a lot like politics,” he explained. “I have kids, and talking about vaccines on the playground is like bringing up religion. It’s very weird and delicate and controversial.”"I have kids, and talking about vaccines on the playground is like bringing up religion. It’s very weird and delicate and controversial."

Though the vaccine studies have yielded results subtly different from the “backfire effect”—people were willing to accept new information as true, even when it had no effect on what they did in the end—Nyhan believes that the same sort of mental gymnastics is likely at work across both areas: reactance, the psychological phenomenon in which persuading people to accept certain idea can push them in the opposite direction.

New Jersey Legislation

The Record reports:

Taxpayers would be allowed to donate to autism research by checking a box on their state tax returns and families would be have access to more information about programs and treatment options, under bills approved by an Assembly committee today.

Both bills cleared the Assembly Women and Children committee and head to the full Assembly for a vote.

The tax donation measure would create an autism research fund with the money ultimately being distributed by the state Department of Health.

“New Jersey has one of the best systems in the country for identifying, diagnosing and caring for children with Autism Spectrum Disorders. It also has the highest autism rate in the nation – it’s hard to find someone in New Jersey who doesn’t have a family member, friend, or neighbor who faces the challenges of autism,” bill sponsor Assemblyman Jay Webber, R-Morris, said in a statement. “Allowing taxpayers to make voluntary contributions through their income tax returns to help combat this terrible problem is an easy and convenient way to help fund the state’s many exemplary autism programs.”

The other measure would create a “New Jersey Autism Website” to be featured on the state Department of Health web site.

The quality of the state's diagnostic systems, of course, may account for the high reported prevalence of autism.