What's Your Connection?

The Internet and social media have been central to the rise of autism as a national issue. From Disability.gov: 

There are nearly 57 million individuals with disabilities in the United States, and they are all connected to the people around them in some way. They are sons and daughters, sisters and brothers, parents and grandparents, coworkers, neighbors and friends.

To celebrate our 10th anniversary, Disability.gov has created the "What’s Your Connection?" initiative, a grassroots movement emphasizing the connections among all people.

How It Works

Maybe your sister has autism or your neighbor is a veteran with a disability. Maybe you have a disability and would like to tell your story. Let us know how having a disability or knowing someone with one has touched your life by:

1) Sending a photograph in JPG format, along with a 250-word maximum caption, to disability@dol.gov.

OR

2) Uploading a captioned, one-minute video to your personal YouTube page and including the hashtag, #myconnection2, in the title.

What's Your Connection? will run from October 30, 2012 to July 31, 2013, and will use social media and grassroots tactics to spark conversations and build support for inclusion of people with disabilities in the workplace and in their communities.

Visit our toolkit to find out ways to help spread the word about the What's Your Connection? initiative!

Rules & Regulations:

By submitting a photograph or uploading a YouTube video with the hashtag, #myconnection2, participants grant permission to the U.S. Department of Labor's Office of Disability Employment Policy to display their work on Disability.gov; the site's Facebook, Twitter or YouTube page; and future print publications.

All submissions will be reviewed and approved by the Disability.gov team prior to being posted on the website or its YouTube page.

All YouTube videos must be captioned. For information on how to add captions to a YouTube video, visit
http://support.google.com/youtube/bin/answer.py?hl=en&answer=100079

All photographs must be in JPG format.

Early Intervention and the Brain

As Alison Singer has said, " in the absence of published data we can’t get needed public policy changes."  In policy discussions, advocates of early intervention programs may benefit from hard evidence of their efficacy.  A release from the University of Washington points to such evidence:

An autism intervention program that emphasizes social interactions and is designed for children as young as 12 months has been found to improve cognitive skills and brain responses to faces, considered a building block for social skills. The researchers say that the study, which was completed at the University of Washington, is the first to demonstrate that an intensive behavioral intervention can change brain function in toddlers with autism spectrum disorders.

“So much of a toddler’s learning involves social interaction, and early intervention that promotes attention to people and social cues may pay dividends in promoting the normal development of the brain and behavior,” said Geraldine Dawson, lead author and chief science officer for the advocacy group Autism Speaks.

A child wearing EEG electrodes looks at a photo of a face, which was used to trigger brain responses to social stimuli.

“For the first time, parents and practitioners have evidence that early intervention can result in an improved course of both brain and behavioral development in young children,” she said.
Dawson began the study while she was the director of the UW Autism Center. The study was published online Oct. 26 in the Journal of the American Academy of Child & Adolescent Psychiatry.

Autism in a Minnesota House Race, Continued

The Associated Press reports on a Minnesota congressional race.  As a previous post noted, the incumbent disclosed that he had moved his children, including his ASD son, to Massachusetts to be closer to their mother.

An autism advocate accused Republican Rep. Chip Cravaack on Monday of revealing his son's autism to get sympathy as he faces questions about his Minnesota ties in a tight congressional race.

Wayne Rohde of the Autism Advocacy Coalition of Minnesota said Cravaack has done little in Washington regarding autism issues. Rohde said Cravaack hasn't joined a bipartisan congressional autism caucus or been active in supporting a federal push for insurance coverage of autism treatments.

"I truly believe it was used to try to gain sympathy and deflect any questions about his residency issue," he said.
...
Rohde, who lives outside the 8th District in Woodbury, described himself as a Republican who isn't politically active. He contacted both campaigns Saturday and heard back from Nolan campaign manager Mike Misterek, who Rohde said asked if he would be willing to release his story to the media.

Misterek said he called Rohde to acknowledge his message.

"I don't think this is a political thing at all," Misterek said.

Campaign adviser Ben Golnik said Cravaack was being honest in disclosing how his son's autism affected the family's move, calling the contact between Nolan's campaign and Rohde "a disgusting new low."

As a previous post noted, Rohde moved from Oklahoma to Minnesota because the latter had a stronger insurance mandate. He was a co-founder of the Vaccine Safety Council of Minnesota.

New York Magazine Article

A couple of months ago, a post discussed ridiculous speculation that Romney is on the spectrum. At New York, Benjamin Wallace writes of terminology:

But this is not a story about Asperger’s, autism, or the spectrum—those very real afflictions that can bring untold hardship to the people who suffer from them and to their families. It is, instead, a story about “Asperger’s,” “autism,” and “the spectrum”—our one-stop-shopping shorthand for the jerky husband, the socially inept plutocrat, the tactless boss, the child prodigy with no friends, the remorseless criminal. It’s about the words we deploy to describe some murky hybrid of egghead and aloof.

He links the phenomenon to DSM-IV, which aimed to add precision to psychiatry:

The science writers hired to draft the DSM-IV text inexplicably dropped one of the criteria the committee had agreed distinguished Asperger’s: gross motor clumsiness. And, arbitrarily, they decided that the criteria for Asperger’s would be the same as for autism, with simply a different number of criteria needing to be met to qualify. “Asperger’s got put in at the last minute,” recalls working-group chairman Fred Volkmar, head of child psychiatry at the Yale–New Haven Children’s Hospital, “with a lot of tweaking of it by powers on high … There’s so much of a rush to get the finished book done and copyedited and out. Things happen.” Volkmar says that for the PDD-NOS diagnosis, a copy editor who happened not to like an “and” replaced it with “or,” a seemingly tiny change that significantly expanded the diagnosis.

Simon Baron-Cohen suggested that parents in science and technology are more likely to have kids on the spectrum:

Baron-Cohen has come in for criticism by scholars and some autism advocates who view his methods as unrigorous. Other researchers have pointed out that so-called autism clusters tend to be in areas with more highly educated people—who tend to marry older (a factor that correlates with higher autism rates) and who have the money to have their kids tested. “I don’t think Baron-Cohen understands the rudiments of genetics,” says Jonathan Mitchell, a high-functioning autistic who writes the Autism’s Gadfly blog. But Baron-Cohen’s work gets all the media play. In 2001, Wired published an article, “The Geek Syndrome,” popularizing the autistic-nerd meme. It was accompanied by Baron-­Cohen’s 50-question self-diagnostic questionnaire, and afterward, says Bryna Siegel, whose clinic is a short drive from Silicon Valley, “we had an incredible number of phone calls. I told my assistant, ‘If someone has their secretary call, don’t call back. If they have a secretary, they don’t have Asperger’s.’ ”

Back to reality:

For clinicians in the trenches, the more exuberant efforts to link autism with genius can be exasperating. “Do blind people hear music more exquisitely than people with sight?” asks Siegel. “We don’t have any neuro­physiological evidence that they do.” Similarly, most people with Asperger’s have average intelligence, with high IQs the exception. And many with ASD, and the families who care for them, suffer terribly. “There clearly are people with ASD who marry,” says Catherine Lord, director of the Center for Autism and the Developing Brain at Weill Cornell Medical College, “but they are not many. More and more people with ASD have jobs, but the majority are underemployed, or have jobs that don’t use their capabilities as much as possible. So these references to Einstein and Jefferson are not helpful.”

Autism and Ethics

Previous posts have discussed ethical issues related to autism. Stephen Post and colleagues have an article in the Journal of Autism and Developmental Disorders: "Brief Report: Stony Brook Guidelines on the Ethics of the Care of People with Autism and Their Families."  Here is the abstract:

The increased prevalence of autism spectrum disorders (ASD), with associated societal and clinical impacts, calls for a broad community-based dialogue on treatment related ethical and social issues. The Stony Brook Guidelines, based on a community dialogue process with affected individuals, families and professionals, identify and discuss the following topics: treatment goals and happiness, distributive justice, managing the hopes for a cure, sibling responsibilities, intimacy and sex, diagnostic ethics, and research ethics. Our guidelines, based not on “top-down” imposition of professional expertise but rather on “bottom-up” grass roots attention to the voices of affected individuals and families speaking from experience, can inform clinical practice and are also meaningful for the wider social conversation emerging over the treatment of individuals with ASD.

Parts of the Stony Brook Guidelines deal directly with public policy:

Ultimately, treatment and access to care for individuals with an ASD should not be a chance consequence of geography, local politics, community resources, health insurance, birth or the ability of parents to advocate effectively, though this set of circumstances is hardly unique to autism. The concern raised by our group members that is specific to autism is the window of opportunity for early interventions that might substantially improve intellectual, social, and emotional functioning across a lifetime. A sense and practice of fairness needs to be developed such that all children with disabilities are provided with services appropriate to their need, with an understanding that the autism community should consider joining with larger movements in advocating for access to educational and medical services. This requires the ability to establish reliable measures of severity of disability and an appropriate range of services that would address each individual‘s needs. Setting mandates for evaluation and service is obviously a contentious issue but such a model could begin to address the need for fairness as well as justice. Ideally parents would not need to be advocating so intensively for their own child‘s needs if they were assured that services were provided on a reasoned and logical basis across all settings.

To reach these goals our group recommends a much fuller listing and description of evidence-based medical requirements for evaluation and treatment of individuals with autism. To establish a fair and measurable system would be complex. An imperfect but fairer service model has been developed in the Early Intervention (zero to three years) Assessment and Treatment programs in New York state. This program does not employ diagnosis-driven interventions (except in some regions for Autism) but assesses five areas of development (speech, cognition, sensory, motor, emotional/behavioral), establishing degree of delay in development of each functional area and allowing specialists to treat those delays which are of clear significance. Without further discussion it can be seen that there could be a structured model for assessment and treatment of autism that incorporates measurable function and defined goals but will have to adapt to great variation in clinical presentation and outcome. Equally such a model would have to evaluate need across a community with regard to costs and resources and has the potential for difficult decisions in relation to where to place resources. For example, some might argue paradoxically that programs need to be more intense for children who have characteristics that might predict better outcome, as is done in fields like stroke rehabilitation. We need to define the concrete treatment needs of this population as well as how to most efficiently and most effectively provide the services required to meet them. Clearer standards are needed to be explicitly and fully stated across the spectrum and the life span.

A number of our core group expressed a need to discuss the issues for individuals with ASD in the institutional justice system of the law. For those working in clinical service, most will be aware of young adults who come into contact with the law because of poor social awareness and judgment, social and communication deficits, association with and exploitation by inappropriate peers, potentially dangerous public emotional outbursts, inappropriate behaviors driven by their internal preoccupations (e.g., impersonating railway employee to gain access to his fixation on trains), or highly inappropriate sexual behavior due to naiveté or inability to relate appropriately. The community reaction is highly variable but there is a need to educate all within the legal system about this group of disorders. The role of the clinician is commonly to provide this education, to strongly advocate for treatment (not incarceration), and establish that the behaviors presented are features of a clinical disorder. One difficulty that commonly arises, because of the nature of the individual‘s presentation, is the belief of some members of the legal system that even if he or she does have a ASD that this does not excuse their actions nor exclude facing the consequences. Community education is needed, including for police.

Special Ed & Standardized Tests in California

Previous posts have discussed standardized tests. The San Francisco Chronicle reports:

California schools have lowered the academic expectations for tens of thousands of students in special education over the past few years, allowing them take a shorter and easier set of standardized tests at a participation rate that far exceeds federal guidelines.

In the spring of 2012, more than half the state's 400,000 students with disabilities took the simplified version of the math, science and language arts tests.

That's nearly three times higher than it should be, and the state should intervene to make sure the modified test is not overused, federal Department of Education officials told The Chronicle.

In general, only 1 in 5 special needs students have a disability that could prevent them from achieving grade-level proficiency on the same tests students without disabilities take, U.S. officials said.

"We are concerned about the high rate of participation in the modified assessment," the U.S. Department of Education said in a statement in response to California's numbers. "We want to make sure that students with disabilities are held to the same high standards as other students."

The story raises the possibility that California is engaging in these practices less to help kids with disabilities than to game its performance stats:

The high rate of use of the California Modified Assessment for students with special needs has raised concerns not only about academic expectations, but also about the impact on overall state test scores and proficiency rates.

The 210,000 students taking the modified assessment - historically among the lowest scorers on the regular test - are no longer part of the equation in calculating state proficiency rates.
Without those students in the mix, the English proficiency rate is about 3 percentage points higher than it otherwise would be.

Deinstitutionalization

The National Council on Disability has a deinstitutionalization toolkit:

NCD’s Deinstitutionalization Toolkit is designed to provide all those interested in institutional closures and expanded community living opportunities for people with intellectual disabilities and developmental disabilities (ID/DD) with information, strategies, state data, and case studies that can facilitate closure and build community capacity to serve more people with ID/DD in the community.

Among other things, it explains aspects of federal law:

To date, three federal statutes govern the rights of individuals who are institutionalized: the Americans with Disabilities Act of 1990 (ADA), the Rehabilitation Act of 1973 (Rehab Act), and the Civil Rights of Institutionalized Persons Act of 1980 (CRIPA). These statutes serve as the bases of legal action for the rights of a person with an intellectual disability or developmental disability (ID/DD) and are critical to the deinstitutionalization process. As noted below, only the Department of Justice (DOJ) can bring litigation under CRIPA, although people with disabilities and their advocates may file complaints with DOJ requesting that DOJ investigate possible CRIPA, ADA, and Rehab Act violations. People with disabilities and their advocates can also file ADA and Rehab Act complaints with their regional Office for Civil Rights within the U.S. Department of Health and Human Services.

It also lays out basic steps of a strategy:

1. Develop a broad-based, well-organized coalition.
2. Explore legal remedies
3. Become experts in Medicaid, the federal Medicaid Home and Community-Based Services Waiver, and the Affordable Care Act.
4. Build your case with faces, not facts.
5. Line up leadership.
6. Analyze the political environment.
7. Seek out groups or individuals with different perspectives.
8. Use timely and targeted communication, public education, and media relations.
9. Advocate for quality assurance standards to protect health and safety of people living in community-based settings.
10. Include specific implementation steps in closure plans

Autism in a Minnsesota House Race

Previous posts have described how autism has become an issue in House and Senate races.  The Minneapolis Star-Tribune reports:

One of Minnesota's toughest congressional races became deeply personal Thursday, with Republican freshman Rep. Chip Cravaack disclosing that his son's autism played a central part in the controversial decision of his wife and two young sons to move to New Hampshire to be closer to her job.

Cravaack and DFL [Democrat-Farmer-Labor] challenger Rick Nolan have been sparring in recent days over two television ads that claim Cravaack no longer lives in Minnesota. Cravaack, who maintains a home in North Branch, says Nolan's claim is a blatant lie.

A DFL ad saying that Cravaack "doesn't even live in Minnesota any more" was pulled from at least one Duluth television station at the Cravaack campaign's request. Another ad remains on the air in which Nolan says that Cravaack is "not from here and he doesn't live here any more."

Cravaack, down in the polls in a DFL-leaning district in northern Minnesota, has been demanding that Nolan pull the ad, but Nolan's campaign has refused, noting that Cravaack criticized former U.S. Rep. Jim Oberstar's D.C.-area residence when he ran against him in 2010.

Injecting autism into the debate has heightened sensitivities in a dispute that was already personal for the 52-year-old former airline pilot and his wife, Traci, whose job as an executive at the Danish pharmaceutical company Novo Nordisk frequently takes her to Boston.

...
Cravaack said he has now decided to talk publicly about his son's condition because the DFL is "making my family an issue." A campaign aide described the child's autism as a mild to moderate condition that requires a structured environment. "When Chip was a stay-at-home dad, he spent a lot of time at the local public school with Nick, helping him out," said the aide, Ben Golnik.

GOP Support for Ohio Autism Mandate

The Columbus Dispatch reports that Republicans are key supporters of an autism mandate in Ohio:

The push to require health-insurance plans in Ohio to cover autism-related expenses is not a new one at the Statehouse, but it has never had backing like this.

A trio of GOP legislators — a former corporate CEO, a conservative business attorney and a member of the House Republican leadership team — are leading the charge to expand the state’s 2006 mental-health parity act to include coverage for autism-spectrum disorders. New, identical bills in the House and Senate are co-sponsored by more than 20 other Republicans — whose party has majorities in both houses — along with some Democrats.
...
“I know what it’s like to have to sign the front of a paycheck,” said Rep. Louis Terhar, R-Cincinnati, a veteran businessman. “I understand the argument about pressures on businesses, particularly small businesses.”

Requiring insurance coverage for autism disorders is not new: Thirty-two states, including every other Midwestern state, do it. Lorri Unumb, an attorney and state-government-affairs advocate for Autism Speaks, said the average cost per employee in those states is 31 cents a month.

“You have to realize there is also an element of corporate social responsibility to all of this,” said Terhar, who is a joint sponsor of the House bill with Rep. Cheryl Grossman, R-Grove City, the chamber’s assistant majority whip. “This is a problem that cries out for a reasoned economic solution.”

Jamie Richardson, a vice president at White Castle, said the company started offering autism coverage for 5,000 full-time employees in 2009. Of the company’s total health-care costs, he said, the autism coverage totaled less than 0.2 percent.

“We looked at this as a case of the right thing to do,” he said. “We went in thinking our costs would be much higher than they actually are.”

...

[Senate sponsor Bill] Seitz, a business lawyer, said he was sold when he learned that the state is spending more than $250 million a year on special-education services for autism, but studies, including one from UCLA, show that 47 percent of autistic students who get special therapy and services through kindergarten can be placed in regular classrooms.

“We can actually save money for all the taxpayers of this state,” he said.

Autism Speaks for Ohio Mandate

Autism Speaks has endorsed the new Ohio mandate bills:

Autism Speaks today endorsed bipartisan legislation that would make Ohio the 33rd state to enact autism insurance reform. Bills introduced in the Ohio House and Senate would clarify that Autism Spectrum Disorders (ASDs) should be covered under the state's Mental Health Parity Act of 2007.

All five states surrounding Ohio have enacted autism insurance reform laws which bar state-regulated health plans from discriminating against children and young adults with autism by refusing to cover proven treatments, such as Applied Behavior Analysis (ABA).

The House bill (HB-598) is sponsored by state Reps. Lou Terhar (Green Township) and Cheryl Grossman (Grove City); the Senate version (SB-381) is sponsored by Senator Bill Seitz (Cincinnati). The legislation was unveiled at a Statehouse press conference today attended by Lorri Unumb, Autism Speaks' vice president for state government affairs.

"Autism Speaks looks forward to working with the Ohio Legislature and advocates across the state in bringing relief to families forced to spend tens of thousands of dollars out-of-pocket every year to care for their children," Unumb said. "When presented with the facts, the Ohio legislature will make the same choice as every other legislature in the Midwest."

The Ohio Mental Health Parity Act specified that biologically based mental illnesses should be covered by health insurers as a “basic health care service,” but did not include ASDs in the definition of “biologically based mental illnesses.

Autism in a House Race

The Deseret News reports that autism has become an issue in a tightly-contested House race in Utah:

Standing along side mothers of autistic children, Rep. Jim Matheson said Wednesday that Mia Love wants to eliminate federal funding for special education.

"In America, everybody gets a chance. That's the deal," he said. "Congress saw that in the 1970s and now my opponent wants to take that away."

Love reacted angrily to that assertion, saying she's never seen him this desperate and that he's trying to scare people.

"I think Jim Matheson should be ashamed of himself and his lack of leadership, that he would take these kids and use them for his own political gain. I want to be very clear here. I believe we have an obligation to care for those who cannot care for themselves," she said.

The six-term Democratic congressman said Utah schools, including 19 in the 4th Congressional District, currently receive $104 million through the Individuals with Disabilities Education Act, which Congress passed in 1975.

"Each school would lose if my opponent has her way," Matheson said at a news conference at the Carmen B. Pingree School for Children with Autism.

Matheson bases his claim about Love from comments she has made throughout the campaign about wanting to do away with the U.S. Department of Education. The department administers special education dollars.

"It does not mean that," Love said.

Matheson, she said, "takes things and totally distorts them." Love said she wants to eliminate federal inefficiencies and give more control to states.

Voting Rights and Disabilities

The right of disabled people to vote is again the topic of media discussion. Kimberly Leonard writes at The Atlantic:

About 30 states and the District of Columbia have laws in their constitutions that can limit people with mental disabilities from voting if they have been ruled "mentally incapacitated," or incompetent, by a court. This means they have been determined unable to manage their own affairs or make specific life decisions, which, other than voting for candidates, can include managing their money, entering a contract, making medical decisions or caring for their children.

People with mental disabilities or patients who are receiving psychiatric treatment do not automatically lose their eligibility to vote in any state. Court-ordered voting restrictions, however, can apply to people judged mentally incompetent due to a range of mental disabilities, such as bipolar disorder, schizophrenia, Down syndrome, or autism.
...
Proponents of these voting limits say they are in place to protect people from voter fraud. Reagan George, president of Virginia Voter's Alliance, a group that monitors voting in the commonwealth, says he has seen people taking advantage of the votes of people with mental disabilities.

"It's a way of harvesting votes that I don't think is correct," he said.

The limits vary from state to state, and it is unclear to what degree they are enforced. Some states do not allow anyone who has been judged mentally incompetent by a court to vote, while other states require that judges specifically revoke voting rights for the limits to apply.
...
Mark Salzer, a Temple University professor and chairman of the school's Department of Rehabilitation Sciences, said voting rights for people with mental health disabilities haven't been at the forefront of recent, widespread debate because people tend to think the laws are correct.

Ohio Mandate Legislation

The Cleveland Plain Dealer reports on a bipartisan effort to pass an insurance mandate in Ohio. State Rep. Cheryl Grossman is sponsoring the House version (House Bill 598).

"I think there is a misconception" about the cost of the coverage, said Grossman, a suburban Columbus Republican. "It is not nearly as high as what had been thought in the past. It's significantly less than what was talked about five years ago."

...
"This has become a much bigger problem and obviously many of our members in the House and Senate have loved ones, children, brothers and sisters affected by autism and it really is, if left untreated, it is a tough row to hoe," said State Sen. Bill Seitz, a Cincinnati Republican who is sponsoring Senate Bill 381.

The trick now is to sell a complicated pair of bills during a lame-duck session and with no guarantees that Gov. John Kasich would sign the legislation into law. The Republican governor has said he is sensitive to the impact of autism but worries about placing additional financial burdens on businesses, which are among his strongest political supporters. Kasich says he welcomes the discussion that the legislation will bring.

...

Seitz said supporters of the legislation made the following concessions to appease business leaders:
• The maximum coverage for Applied Behavior Analysis for one person would be capped at $50,000 annually.
• The bill makes clear who and what type of services would be covered, an attempt to satisfy insurance companies that did not want to be responsible for everything related to special-needs education.
• Employers could opt out of coverage if they can show that it causes their premiums to rise by more than 1 percent over the previous year, a provision that is in the current mental health insurance law.

Seitz notes that focusing on early intervention services may cut down on state-assisted services through Medicaid and the school system later in the child's life.

This is an example, Seitz said, of making an investment on the front end "to save everyone, including the taxpayer, a lot of money on the back end."

Autism, Insurance, and Federal Employees

Autism Speaks reports:

ABA coverage under the Federal Employees Health Benefits (FEHB) program will be offered for the first time in 2013 by 38 participating health plans operating in 23 states. The action is significant as the FEHB is the nation's largest single health insurance program, covering eight million federal employees, dependents and retirees. Open season for 2013 medical coverage runs November 12 through December 10.

The U.S. Office of Personnel Management (OPM), which manages the insurance program, determined earlier this year that Applied Behavior Analysis (ABA), the most widely used behavioral intervention for treating autism, is a “medical” therapy that qualifies for health insurance coverage. The decision was rendered in the form of guidance to insurers that participate in the FEHB Program for policies that will be renewed or issued starting in 2013.

Website Goes After Jenny McCarthy

The fight over vaccines and autism can get very tough indeed.  Jenny McCarthy has been a part of the issue. From the homepage of the Jenny McCarthy Body Count:

Senators Write to HHS on Essential Health Benefits

A number of posts have dealt with treatment of autism in the implementation of the Affordable Care Act. An October 15 release from Senator Kirsten Gillibrand (D-NY):

U.S. Senators Kirsten Gillibrand (D-NY), Barbara Boxer (D-CA), Al Franken (D-MN), and Sherrod Brown (D-OH) today pushed the federal government to require all health care plans to cover autism treatment by 2014. The Department of Health and Human Services (HHS) recently released guidelines that leave it up to states to decide whether or not to include autism care in statewide health plans. Senators urged HHS Secretary Kathleen Sebelius to clarify that a kind of autism treatment known as applied behavior analysis (ABA) is part of the essential health benefits that must be covered under health care plans by 2014.

Senators Gillibrand, Boxer, Franken, and Brown wrote in a letter to Secretary Sebelius, “Rather than setting a uniformly high national standard, the [HHS] guidance allows states to select benchmark plans that neglect or skimp on autism care… If the guidance is not changed, children and adults with autism will not be better off when Affordable Insurance Exchanges launch in 2014 than they are today… Congress recognized autism as a top national health priority. We intended not to preserve the status quo but to reduce the burdens faced by families across the nation. In finalizing the guidance for the essential health benefits, we urge you to clarify behavioral health treatment as including ABA for individuals on the autism spectrum.”

In December 2011, HHS issued the Essential Health Benefits (EHB) Bulletin which allows each state to “benchmark” its own essential benefits package to one of several existing employer-based insurance plans. Currently, 32 states require some form of autism coverage, including New York. Even states with laws in place can choose benchmark plans that provide only a portion of ABA coverage. States without mandates are not required to cover autism treatment at all. The guidelines also require states that lack autism insurance laws or enacted autism insurance laws in 2012 to defray the cost of any ABA coverage provided through a state health insurance exchange.

The elected officials called for a uniform federal standard, regardless of one’s health insurance plan or state’s insurance law, to ensure that families and children across the country have access to affordable treatment.

Behavioral interventions that use the methods of applied behavior analysis (ABA) have become widely accepted among health care professionals as an effective treatment for autism.

This past June, the American Academy of Pediatrics endorsed the use of ABA treatments when determined appropriate by physicians within a medical home and in close consultation with families.

Finding Wanderers

As previous posts have indicated, wandering can be a big problem for some people on the spectrum. AP reports:

Based in Florida, Project Lifesaver is a charitable organization that provides training and equipment to find people with cognitive disorders, such as Alzheimer's disease, dementia and autism.

People enrolled in Project Lifesaver are outfitted with a personal transmitter bracelet that is placed on their wrist or ankle. The bracelet emits a tracking signal that emergency workers can use to find the person if he or she wanders away or goes missing.

The Pilot Club of Lancaster is helping to bring the program to Lancaster County.

With the help of a $5,000 bequest and a lot of fundraising, the 30-person club is providing more than $10,000 to kick-start the program here by providing equipment and training, said Cathy Cieslinski, a club member.

"We feel it could make a difference in families' and caregivers' lives," she said.
The cost of outfitting a person with the tracking bracelet and batteries is about $300 and covers them for a year.

After that, the fee is about $10 a month. The club will work to help families who cannot afford the service, she said.

Autism and Voting Rights

Previous posts have discussed the voting rights of people with autism. At Autism Speaks, Stuart Spielman writes:

The Bazelon Center for Mental Health Law recently surveyed state laws affecting the voting rights of people with intellectual and developmental disabilities and people receiving mental health treatment. The Center's findings are summarized here. 

Bazelon and the National Disability Rights Network have published a guide that identifies key legal principles for voting rights, including the following:

• A state does not need to require a voter to demonstrate competence, and some states don’t.
• If a state chooses to impose a voter-competence requirement, that requirement cannot be so broad that it takes away the right to vote of people who are capable of voting. It cannot single out a particular group of voters, such as people who are the subject of guardianship proceedings.
• In virtually all states, only a court can find that a person is not competent to vote.
• Questions about a voter’s competence can form the basis for a voter challenge only under very limited circumstances, if at all. Most states’ laws restrict the grounds on which a voter may be challenged, the people who may bring a challenge and the types of evidence that can form the basis for a challenge. Many states do not permit any voter challenges based on competence.
• People with disabilities have the right to get help with voting and to decide who will help them vote. A person with a disability can get help from a friend, family member, caregiver, residential service provider or almost anyone else of his or her choosing except an employer or union member. The person can also ask a poll worker for assistance with voting. 

For questions about voting rights, contact the Bazelon Center at: 202-467-5730.

The Bazelon Center and the National Disability Rights Network created three model motions guardians can use to modify their guardianship order to restore voting rights. They can be found here.

From the Oregon Council on Developmental Disabilities:

Autism and Senate Races

NorthJersey.com reports:

U.S. Sen. Bob Menendez touted his efforts on behalf of autism funding and awareness during a campaign stop in Wayne Monday. The appearance comes three weeks before the election, as both Menendez and his GOP opponent Joe Kyrillos continue efforts to woo voters.

Menendez met with several New Jersey advocates in the fight against autism who said they consider the Democrat one of their most vocal supporters. Menendez spoke about the Combating Autism Reauthorization Act, which provides federal support for research, screening, therapy and education on autism. The bill, which he authored, was passed and signed into law last year.

The press event took place at the home of Cecilia Feeley, whose 13-year-old son was diagnosed with autism a decade ago. Feeley said many people did not understand the problem a decade ago, but that strides in the law, health care and education have made it easier for families like hers. She hoped leaders like Menendez would continue their work and get resources and care extended to adults with autism.

The Los Angeles Times reports on autism activist Elizabeth Emken, in an uphill race against Senator Dianne Feinstein (D-CA):

She pressed lawmakers in both parties to pass the Children's Health Act of 2000, the Combating Autism Act of 2006 and laws in more than two dozen states requiring insurers to cover behavioral health treatments for the disease. All required bipartisan backing.

Craig Snyder, a lobbyist who worked for both nonprofits, recalled an early meeting with now-retired [He died shortly after the article came out.] Pennsylvania Sen. Arlen Specter, who held the purse strings for federal research. Specter "was in a foul mood" during the five minute "walk-and-talk" outside chambers, dismissing Emken and Snyder for seeking "miracles with dollars that don't exist." Then Emken got inches from his face.

"Are you trying to say that a mother of a sick child doesn't have the right to petition an elected official for the rights of that child?" Snyder recalled her asking. "The tenor of the meeting changed 180 degrees," he said.

Co-Occurring Conditions

A new article in The Journal of Abnormal Child Psychology provides important data on co-occurring conditions:

Children with autism spectrum disorders (ASD) experience high rates of anxiety, sensory processing problems, and gastrointestinal (GI) problems; however, the associations among these symptoms in children with ASD have not been previously examined. The current study examined bivariate and multivariate relations among anxiety, sensory over-responsivity, and chronic GI problems in a sample of 2,973 children with ASD enrolled in the Autism Treatment Network (ages 2–17 years, 81.6 % male). Twenty-four percent of the sample experienced at least one type of chronic GI problem (constipation, abdominal pain, bloating, diarrhea, and/or nausea lasting three or more months). Children with each type of GI problem had significantly higher rates of both anxiety and sensory over-responsivity. Sensory over-responsivity and anxiety were highly associated, and each provided unique contributions to the prediction of chronic GI problems in logistic regression analyses. The results indicate that anxiety, sensory over-responsivity and GI problems are possibly interrelated phenomenon for children with ASD, and may have common underlying mechanisms.

Libertarians and Autism?

At The Washington Times, Emily Esfahani Smith writes of a study titled “Understanding Libertarian Morality,” published recently in the scientific journal PLOS ONE.

The libertarian style of thinking can even verge, in extreme cases, on autism.

The University of Cambridge-based psychologist Simon Baron-Cohen, a leading autism researcher, famously has shown that people with autism exhibit two critical features: They test exceptionally low on empathizing scales and exceptionally high on systemizing ones.

Empathizing governs social relationships — Are you able to relate to other people? — while systemizing governs understanding and analysis of the outside world. Everyone falls somewhere on the empathizing-systemizing scale.

Libertarians score very low on the empathizing scale and very high on the systemizing scale. In other words, they are highly rational moral thinkers, less emotional than both conservatives and liberals. Two of the leading moral thinkers of Western history — utilitarian Jeremy Bentham and deontologist Immanuel Kant — were also incredibly gifted systemizers but deficient empathizers. Today, Bentham and arguably Kant would might be diagnosed with Asperger’s

There are upsides to such a coolly analytic cognitive style. For instance, libertarians are better at logic problems, says Mr. Iyer, a research scientist at the University of Southern California and the lead author of this study. The downsides include a “greater susceptibility to autism,” he says.

“Any ideology or philosophy, taken to an extreme, likely resembles some pathology or another,” Mr. Iyer explains.

Prominent libertarians object to the study’s findings that their beliefs are morally and politically monochromatic. David Boaz, vice president of flagship libertarian think tank the Cato Institute, says that he sees “no evidence that libertarians display less love, compassion or morality than other people.”

Legal scholar Richard Epstein, Mr. Haidt’s colleague at New York University, agrees, noting that libertarians make a distinction between the political and personal world when responding to such questionnaires. Libertarians believe, Mr. Epstein says, that liberty is the guiding value on matters of public policy while “allowing for the personal values to dominate [personal] interactions.”

A few observations:

• There is a long, unfortunate history of trying to link ideology to mental conditions, starting with the discredited book The Authoritarian Personality.
• The study rests on a nonrandom, web-based sample, so one has to wonder about whether it is possible to generalize from it.  A large bad sample is still a bad sample.
• The parlor game of diagnosing Asperger in people who've been dead for more than a century is pretty silly.
• "Susceptibility to autism" -- what the hell does that mean? It sounds as if autism were something that you could catch -- which it isn't. 
• Epstein nails it on the difference between the personal and the political.

Compounding Pharmacies

Many parents of ASD children use compounding pharmacies.  The Center for Responsive Politics reports:

COMPOUNDING PHARMACIES BATTLE REGULATION: Compounding pharmacies have been suddenly thrust into the public spotlight after multiple cases of meningitis were traced to steroids mixed -- or compounded -- at a pharmacy in Massachusetts. Compounding pharmacies, which operate differently than regular pharmacies, are a relatively new phenomenon, and the battle over how they're regulated is still being fought.

But the young industry has isn't naive in the ways of Washington. The Wall Street Journal reported yesterday, citing Center for Responsive Politics data, that the International Association of Compound Pharmacies has spent more than $1.1 million since 2000, wrangling with Congress and regulators at the Food and Drug Administration.

As the Journal points out, it's not clear that the current meningitis outbreak would have been prevented by any proposed regulations (or better oversight of current regulations), but a review of lobbying records on OpenSecrets.org shows that the IACP isn't the only group lobbying on compounding pharmacies. In fact at least 30 organizations have filed dozens of lobbying reports in the last decade on the issue of "compounding" -- many of them individual compounding pharmacies, but also a number of pharmaceutical giants with high-octane lobbying operations, like Wyeth, AstraZeneca and Pfizer.

From the Wall Street Journal report:

After regulators including Dr. [David] Kessler called for greater oversight of the industry, Congress in 1997 passed a law that gave the FDA clearer authority to treat them like drug makers. Small pharmacies were exempt from FDA regulation, but those that advertised or solicited business faced greater FDA scrutiny.

In 2001-02, four people died, more than a dozen were injured and hundreds exposed after they received back-pain shots tainted with meningitis dispensed by two pharmacies in California and South Carolina. The pharmacist in charge at the California facility later surrendered his license after state regulators found nonsterile conditions.

Around that time, seven compounding pharmacies filed a lawsuit seeking to peel back the FDA's regulatory powers on the grounds that the provision on advertising violated the First Amendment. In 2002, the Supreme Court struck down the 1997 law in a 5-4 ruling that found the law was an unconstitutional prohibition against commercial free speech.

After that, the FDA tried to regulate the industry by issuing compliance policy guidelines. But those had little effect, attorneys say, because they don't carry the same weight as laws or formal regulations.

When Edward Kennedy and Pat Roberts were working on a new law in 2007, compounding pharmacies mobilized their clients. Reuters reports:

Compounders also enlisted parents of autistic children, who besieged Kennedy's office, arguing that compounding pharmacies were the sole source of treatments for the condition, such as the unproven therapy chelation to remove toxic metals from the body. Kennedy's bill never reached the floor.

The bill's proponents "saw the opposition and decided it wasn't going anywhere," said Fusco Walker.

Autism and Pesticides

A number of posts have dealt with autism and the environment.At Forbes, Emily Willingham writes:

An anti-pesticide manifesto [PDF] from the Pesticide Action Network North America (PANNA) has recently made a few headlines in big papers and nabbed a feature on an NPR member station with claims that “children today are sicker than they were a generation ago” and that pesticides are a “key driver” of the increase in childhood disorders such as “childhood cancers … autism, birth defects, and asthma.” The news reports almost invariably describe the tome in scientific terms without mentioning that it’s self published and not peer reviewed and contains no new data or information. The stories do not fail, however, to mention autism and to mention it early.

The PANNA authors pin their autism claim in part on the much written-about “autism epidemic.” While environmental factors might play some role in a small portion of the increase in autism, as I argue here, the general consensus appears to be that diagnostic substitution and enhanced awareness and recognition are the main drivers. Regardless of whether a genuine increase exists and what environmental factors are key to it, very little published evidence suggests a link between autism diagnoses and pesticide exposures. Yet the two keep popping up together in articles that sensationalize a relationship or posit one from research that doesn’t address autism at all.

Limits of the Michigan Mandate

The Detroit News reports on the limits of the Michigan mandate:

A state law requiring insurance companies and health plans to pay for treatments for children with autism goes into effect today, but autism advocates and parents say that while the new measure is a significant step, many families may get little, if any, help from the new statute anytime soon.

Michigan has far too few medical professionals who offer the specialized therapy autistic children require, they say, and some insurers appear to be setting conditions that could make autistic children and their families wait many months for help — if they get it at all.

In the meantime, families with autistic children either go without the treatment that can help their sons and daughters learn to function, or teeter on the brink of financial ruin.

Blue Cross is putting up roadblocks:

First, children must be screened to confirm a diagnosis of autism and have a treatment plan at one of four medical centers in the state, all in Southeast Michigan, where the shortest waiting list already is four months long.

Second, according to one autism expert who's been in discussions with the insurer, Blue Cross plans to reimburse the certified behavioral therapists who'll provide the state-mandated Applied Behavior Analysis therapy $36 per hour for services. The expert, who asked not to be identified because discussions continue with Blue Cross, said such specialized therapists usually receive $50 to $125 an hour.

Autism Speaks and the Debate

From Autism Speaks:

Autism Speaks is preparing for Tuesday's Presidential debate at Hofstra University by organizing advocates to appear at Good Morning America, the Today show and a pre-debate event, and encouraging advocates outside the New York area to make the "1 in 88 Can't Wait" message seen and heard.

Advocates will be outside the Good Morning America and Today show broadcasts holding "1 in 88 Can't Wait" signs. If you do not live in the New York area, here is what you can do to help: 

1.) Take a picture of you, your family or your child holding a poster that says something like, "My 1 in 88 can't wait!", "I'm 1 in 88 with autism & can't wait!", "Put autism in the debates", "We love our 1 in 88 and can't wait for you to put autism in the debates."

Decorate the poster, be creative, have fun. Share your picture with us on your Facebook Page to show your friends what you are doing!

2) Tweet the picture to ABC's Good Morning America for its Monday broadcast and NBC's Today show Tuesday. We will have community members holding signs outside of GMA on Monday (Oct. 15) & outside Today on Tuesday (Oct. 16). CBS This Morning doesn't have an outdoor venue, but we can still send them pictures! Participate from home by sending both the candidates & news shows your pictures.

First, here are suggested Tweets:

"Hey @BarackObama @MittRomney @GMA Our 1 in 88 can't wait. Put #autism in the #debates! #AutismVotes2012"
"Hey @BarackObama @MittRomney @todayshow Our 1 in 88 can't wait. Put #autism in the #debates! #AutismVotes2012"
"Hey @BarackObama @MittRomney @cbsthismorning Our 1 in 88 can't wait. Put #autism in the #debates! #AutismVotes2012"

Then, attach your Twitpic and tweet!

NOTE: If you don't have a Twitter account, create one easily at www.twitter.com

3) Post on the candidates' Facebook pages. Continue to visit the Obama Campaign Facebook page here and the Romney Campaign Facebook page here throughout the weekend. You cannot post directly to their pages, so please post this wherever you can on their Facebook page, even under a seemingly unrelated topic. The goal is for each campaign to see thousands of posts from the autism community:

(President Obama/Governor Romney) - Our 1 in 88 can't wait for leadership and a plan surrounding all the issues the autism community faces today. Please discuss autism in the debate at Hofstra Univeristy & let us know what you will do to help people living with autism today.

Between 3 pm and 11 pm on Tuesday, the day of the debate, Hofstra will operate a Public Area at its Hempstead, Long Island campus where advocates can make their voices heard. Autism Speaks is registered and will be there to speak and build an audience.

Getting Autism in the Debates

Autism came up briefly in the first presidential debate.  There is a movement afoot for a more extensive discussion, as Autism Speaks reported on Thursday:

Autism Speaks joined a social media campaign today with the nation's leading autism advocacy organizations to raise autism as an issue in the Presidential debates and as an issue that cannot be ignored in this year's elections at the national, state and local levels.

Emails were sent to all 150,000 advocates registered with the Autism Votes campaign, and messages were posted on Facebook and Twitter asking the autism community to urge the Obama and Romney campaigns "to discuss a plan for leadership on increased funding for dedicated autism research and appropriate health insurance coverage for all Americans with autism."

Examples:

On Friday, an Autism Speaks video featured a person with ASD:

In a new election video, self-advocate Amy Gravino asks this year’s candidates, “This fall, please don’t break my heart.” And she calls upon the autism community to be a part of the conversation as the nation debates our future. Watch the video below and read Amy's previous blog post on why 1 in 88 Can't Wait.

Michigan Mandate to Take Effect

MLive reports:

Michigan’s autism insurance mandate officially kicks in on Monday.

Lt. Gov. Brian Calley, whose daughter has autism, signed a bipartisan package of billsin April requiring insurers to offer coverage for autism treatment and diagnosis.

It takes effect on Monday, but there will be a grace period allowing insurers to begin programs at the start of their next plan year.

“This new law means that Michigan is well on its way to going from being one of the worst 10 states to raise a child with autism to being one of the best,” Calley said in a statement.

State regulators launched a website for the Autism Coverage Reimbursement Program. The fund, which received a $15 million appropriation for its first year, will reimburse eligible health insurance companies and third-party administrators for paid claims tied to autism treatment and diagnosis.

FAPE, LRE, and Distance Learning

At State Impact, John O'Connor writes about 13-year-old Henry Frost.  During the Republican convention in Tampa, he sat outside a downtown Tampa building holding a sign: “The Civil Rights Act of 1964 granted equal rights to all people. I am a person. I want these rights.”

Frost has autism and a list of related physical problems which have so far eluded a tidy diagnosis. He communicates using an iPad app that speaks what he types.

The right Frost is seeking is the ability to attend Wilson Middle School in his South Tampa neighborhood. The Hillsborough County school district has told Frost they believe he is better off at a specialized program at Coleman Middle School, his family says.

Frost’s photo – and his cause – has gone viral since the photo was posted at the end of August. Thousands have given it an electronic thumbs-up on his I Stand WITH Henry Facebook page. And more than 2,100 have signed an online petition asking Hillsborough schools to let Frost attend Wilson Middle.

Disabilities and special education experts say it’s a common dispute: A family and a school district disagree about what school is best for the student.

School officials say they work hard to give thousands of students with disabilities and their parents what they want. But sometimes parents don’t get the final decision and school officials do.

While he tries to win admission to Wilson, Frost is taking course at home online. His family worries he is falling behind his classmates. Frost says he just wants to prove himself in a general education classroom.

Taking courses online is problematic.  Difficulties with social communication are at the core of ASD, and it is hard for students to overcome such problems if they are sitting alone at a computer screen instead of attending classes in general education classrooms. The Center for Online Learning and Students with Disabilities identifies a number of concerns with online learning:

1. Complaints: Reports of complaints and dispute resolutions are beginning to emerge as parents and others express serious concerns about how students with disabilities are served in online learning environments.
2. Inconsistent Policies: Ambiguity and variability exist in cross-state and cross-district funding, policies, and roles and responsibilities for providing special education and related services to students with disabilities in online environments.
3. Accessibility and Universal Design: Preliminary inspection of widely adopted online environments reveals major gaps in basic accessibility for students with disabilities. Equally concerning is the general lack of instructional design and the specific lack of universal design for learning options. As some states have begun to include online learning as a graduation requirement, this poses a significant civil rights issue.
4. Teacher Training: Preparation for teaching online courses is often minimal even for regular education teachers. The special preparation in the unique competencies required to provide online instruction to students with disabilities is often totally absent.
5. Monitoring and Accountability: No national data are available to demographically describe the students with disabilities engaged in online learning (e.g., socioeconomic status, types of disabilities, age/grade levels) and thus there is no way to monitor their progress, proportionality, and outcomes.
6. Reasons for Placement: Educators and policy makers presently have little knowledge of why students with disabilities (and their parents) choose to engage in online learning (with the possible exception of those students involved in credit recovery activities). Some have raised concerns that online learning is being adopted as the least effortful alternative.
7. Social and Emotional Supports: Educators and policy makers have insufficient information about whether and how online service providers address the non-academic and social-emotional aspects of special education in online learning.
8. Lack of Guidance: No guidelines exist to determine whether an online learning environment is truly the least restrictive environment for students with disabilities.
9. Inequities: A digital divide (e.g., access to bandwidth infrastructure and devices) remains in many communities throughout the U.S., and the extent to which this divide affects access for students with disabilities is unknown.

Peter Bell on Current

Peter Bell of Autism Speaks appeared on Jennifer Granholm's show on Current, "The War Room."  Here is a clip:

 

Implementing the Health Care Law

Autism Speaks reports:

The states are creating a patchwork of available autism benefits as they begin implementing the Affordable Care Act (ACA) due to poor guidance from the federal government, according to an Autism Speaks analysis of preliminary data.

The states were requested to notify the U.S. Department of Health and Human Services (HHS) by September 30 what existing health plan they had selected to serve as the model, or benchmark, that many individual and small group plans will have to start offering in 2014. The ACA requires 10 categories of essential health benefits, including behavioral health treatment for autism, be included in the new coverage. The requirement affects individual and fully insured small group plans that were created after the ACA was signed into law in 2010.

In an examination of the 29 states that enacted autism insurance reform laws through 2011, Autism Speaks found that six had officially adopted a benchmark plan and submitted it to HHS and that benchmark plans had been recommended for approval in another eight states. The preliminary review of the plans found:

• The six adopted benchmark plans each require autism insurance coverage (Arizona, California, Colorado, Kentucky, New Hampshire and New York, shown in dark green)
• Four states with recommended plans include an autism benefit (Arkansas, Connecticut, Illinois and Vermont, shown in light green)
• The other four states with recommended plans do not include an autism benefit (Kansas, New Mexico, Rhode Island and Virginia, shown in red)
• The remaining 15 states (shown in yellow) either asked HHS for further guidance before they submit plans or their status could not be determined by Autism Speaks
• Alaska, Delaware and Michigan, which enacted autism insurance reform laws this year, were not included in the analysis because of a December 31, 2011 cutoff date established by HHS regarding state-required benefits

Why Study Wandering?

At the Autism Science Foundation, Alison Singer explains why groups financed the wandering study:

A few people have asked me why we spent money studying something we already knew. The reason we have to spend money on this is because in the absence of published data we can’t get needed public policy changes. As a result of having this data (even before it was published today) we were able to get a medical classification code for autistic wandering, which means doctors can be reimbursed for time spent warning parents about wandering and discussing preventive measures. Now we are trying to use the published study to get an “autism” alert, like the amber alert, so that first responders can be notified when our children wander. Our kids are not covered by the amber alert because they are not (technically) abducted. So while it seems silly to have to “study” this, it is a very necessary step in getting our kids the help and protection they need and deserve. ASF funded this study and I am really proud of the work we are doing in this area. 

Study of Wandering

Connie Anderson and colleagues have a study of wandering in Pediatrics.  The abstract:

OBJECTIVES: Anecdotal reports suggest that elopement behavior in children with autism spectrum disorders (ASDs) increases risk of injury or death and places a major burden on families. This study assessed parent-reported elopement occurrence and associated factors among children with ASDs.

METHODS: Information on elopement frequency, associated characteristics, and consequences was collected via an online questionnaire. The study sample included 1218 children with ASD and 1076 of their siblings without ASD. The association among family sociodemographic and child clinical characteristics and time to first elopement was estimated by using a Cox proportional hazards model.

RESULTS: Forty-nine percent (n = 598) of survey respondents reported their child with an ASD had attempted to elope at least once after age 4 years; 26% (n = 316) were missing long enough to cause concern. Of those who went missing, 24% were in danger of drowning and 65% were in danger of traffic injury. Elopement risk was associated with autism severity, increasing, on average, 9% for every 10-point increase in Social Responsiveness Scale T score (relative risk 1.09, 95% confidence interval: 1.02, 1.16). Unaffected siblings had significantly lower rates of elopement across all ages compared with children with ASD.

CONCLUSIONS: Nearly half of children with ASD were reported to engage in elopement behavior, with a substantial number at risk for bodily harm. These results highlight the urgent need to develop interventions to reduce the risk of elopement, to support families coping with this issue, and to train child care professionals, educators, and first responders who are often involved when elopements occur.

The New York Times reports on the study:

“I knew this was a problem, but I didn’t know just how significant a problem it was until I really began to look into it,” said Dr. Paul A. Law, senior author of the study and director of the Interactive Autism Network, a registry that is a project of the Kennedy Krieger Institute in Baltimore. “This is probably one of the leading causes of death and morbidity for kids with autism.”

Advocates for families affected by autism say the findings underscore the need to raise public awareness and alter policy. While Amber alerts are used to mobilize the public when a child is believed to have been abducted, for instance, generally they are not used when a disabled child goes missing, said Alison Singer, president and a founder of the Autism Science Foundation, one of the organizations that supported the study.

Emergency responders should receive special training on how to search for autistic children who are nonverbal and often scared by lights and sirens, she said. Emergency personnel also need to know to check streams or ponds, since many children with autism are drawn to bodies of water, as well as highways.
...
The idea for the new study came from a family coping with autism, and it was financed by several advocacy organizations. Researchers surveyed families who had a child with autism or a related disorder between the ages of 4 and 17.

Most of the respondents came from 1,098 of Interactive Autism Network’s most active participants, 60 percent of whom completed the survey. Families who chose to participate knew the survey was about wandering, and those coping with wandering children may have been more likely to respond, skewing the results, Dr. Law acknowledged.

TV News Special on Autism

In Charlotte, NC, WBTV has aired a news special on autism.  Part 4 (below) features insurance and advocacy.  It includes an interview with Lorri Unumb, who wrote Ryan's Law in South Carolina:


WBTV 3 News, Weather, Sports, and Traffic for Charlotte, NC

Report on Disability Rights

From a release by the US Department of Education:

[T]he Department of Education’s Office for Civil Rights (OCR) released Disability Rights: Enforcement Highlights published to commemorate the 39th anniversary of Section 504, and reviewing OCR’s work over the last three years to enforce this important civil rights statue.

...

Disability Rights: Enforcement Highlights describes how OCR has worked to ensure the protections of Section 504, as well as Title II of the Americans with Disabilities Act, in schools and colleges. In the last three fiscal years, OCR has received over 11,700 disability-related complaints – more than ever before in a three-year period, and more than half of the total complaints received by OCR during this period. Since January 2009, OCR has also launched more than 30 systemic, proactive investigations that address a broad range of disability-related issues in institutions across the country. And, the office has issued multiple policy documents guiding schools and universities in how to meet their responsibilities under federal disability rights laws.

The document also reports on data culled from the Civil Rights Data Collection (CRDC), released by OCR in March of this year. The CRDC surveyed 72,000 schools teaching 85 percent of America’s students, and its data showed that inequities for students with disabilities remain a reality in many of America’s schools. For example, nearly a third of school districts in the sample reported at least one incident of bullying or harassment on the basis of disability. And, students with disabilities represent 12 percent of the sample, but nearly 70 percent of the students who are physically restrained by adults in their schools.

The report notes that FAPE accounts for more complaints than any other issue: