M.R. v. Ridley School District: Private Placement and FAPE

A release from the National School Boards Association:

The National School Boards Association (NSBA), joined by thePennsylvania School Boards Association (PSBA) and the National Association of State Directors of Special Education (NASDSE), today filed a “friend of the court” (amicus) brief in the U.S. Supreme Court in the case of M.R. v. Ridley School District. At issue in the case is whether school districts must continue paying for a student’s private placement once a court finds the school district provided the child with a free appropriate public education (FAPE). Under the stay-put requirement in the Individuals with Disabilities Education Act (IDEA), school districts must pay for a disabled child’s current educational placement while legal proceedings continue to resolve a dispute between parents and schools.

The groups urge the Court to review the decision of the U.S. Court of Appeals for the Third Circuit extending the stay-put obligation through completion of all appeals—a departure from previous court rulings that limited the stay-put obligation only until a trial court issued a decision.

The amici argue that the Third Circuit’s decision risks inflicting significant harm on school districts and the students they serve. By extending school districts’ obligation to pay for private school placements until all appeals are exhausted, the decision creates an incentive for parents to prolong litigation rather than to work collaboratively with school districts to resolve disputes without delay; the increased liability for private tuition and legal fees from needlessly prolonged litigation imposes an untenable burden on the already-strained budgets of local school districts and diverts resources away from providing educational services to all children. The brief contends that one legal dispute could mean hundreds of thousands of dollars expended on an unnecessary placement and legal fees and innumerable hours of professional educators’ time spent in legal proceedings rather than the classroom.

From Education Week:

The Ridley school system argued that once the district court decided that Ridley had provided a free and appropriate public education, it was no longer responsible for any private school costs. It also said the parents should have tried to get the money earlier in the legal proceeding. But the February ruling from the appeals court found otherwise, saying that the district owed the parents close to $58,000 in tuition. From the ruling:

We are not insensitive to the financial burden our decision will impose on school districts ... or the seeming incongruity of the ultimately prevailing party having to pay for a now-rejected placement. Despite two judicial determinations that Ridley did not deny E.R. a FAPE, the school district will be assessed the cost of her private school education for a substantial period of time. It is impossible, however, to protect a child's educational status quo without sometimes taxing school districts for private education costs that ultimately will be deemed unnecessary by a court. We see this not as "an absurd result," ... but as an unavoidable consequence of the balance Congress struck to ensure stability for a vulnerable group of children.

As an aside, Pennsylvania, along with five other jurisdictions (California, the District of Columbia, New Jersey, New York and Puerto Rico), accounted for 80 percent of the due process complaints filed between 2006-07 and 2011-12, and 90 percent of the complaints that were adjudicated.

More on Voting Rights

A previous post discussed a voting rights lawsuit.  John Hrabe reports at CalWatchdog:

“This issue is a longstanding and concerning one — many autistic people and those with other developmental disabilities are denied fundamental rights, like voting, due to guardianship,” Ari Ne’eman, president of the Autistic Self Advocacy Network, told CalWatchdog.com. “We’re pleased to see this issue highlighted and will be urging the Justice Department to act on the complaint.”

According to a 2012 study published in the Lancet, adults with disabilities are more likely to be physically and sexually abused than adults without disabilities. “People with mental illness are about four times more likely — and people with intellectual impairments are about one-and-half times more likely — to get abused than non-disabled adults,” the study found. That’s reinforced by the 2012 National Survey on Abuse of People with Disabilities, which found more than 70 percent of people with disabilities claiming to be victims of abuse.

But, without voting rights, people with disabilities aren’t a political force that can demand action on problems affecting 15 percent of the population. That was no different in this case. Disability advocates asked state and local officials to address the voting rights problem, but were ignored.

“We reached out to the ‘powers that be’ both locally and at the state level to correct this problem,” said [Thomas] Coleman, the attorney for the project. “Nothing has changed. So we are ‘making a federal case out of it.’”

New York Schools v. Special Needs Kids

The New York Times reports on Dylan Randall, a disabled student whose parents fought for private placement and who died just as they won their battle.

For decades, parents of special-education students nationwide have been able to seek private schooling at no extra cost at public expense when public schools fail to meet their needs. Court rulings over the last decade have strengthened that right, and the city now spends more than $200 million a year on such education, up from just a few million dollars a year in the 1990s, when requests were far rarer.

Under the Bloomberg administration, the city beefed up its special-education legal team. The team evaluates requests and, increasingly, has denied them, arguing that city schools — where the cost of educating a special-needs student is generally $20,000 cheaper than in private school — are appropriate. Families can challenge the denial in a hearing. The Randalls’ hearing was one of 6,241 requested by families last year, up from 5,403 in 2008, according to State Education Department data. Families win a majority of those cases, according to city education officials. Either side can appeal a hearing decision to the state and, after that, in court.

In the past, members of the Bloomberg administration said they scrutinized requests to weed out families who were simply trying to get free private schooling, when public schools could meet their needs. Eric Nadelstern, a former deputy schools chancellor who is now a professor at Teachers College at Columbia University, said the efforts were rooted in a desire to pour money into special-education programs for all public school children, not to deny any one child’s chances for the best possible education.

ABLE Act Prospects

At National Journal, Sarah Mimms writes of prospects for the ABLE Act:

Although the bill failed to gain traction in past Congresses, it appears to have real legs heading into the fall. A Senate Democratic aide explained that although the concept has always been popular, it has taken years for advocates to get momentum for an issue that isn't particularly timely.

But heading into the August recess, the Able Act now has an astonishing 366 cosponsors in the House and 76 in the Senate and is very likely to pass this fall. Both House and Senate leadership have already committed to bringing the bill to the floor in their respective chambers and are aiming for September votes, according to the Senate Democratic aide. That timeline would provide Congress with one last kumbaya moment before all hell breaks loose in the November midterm elections.

"No other bill in Congress has this level of bipartisan and bicameral support," Sen. Robert Casey, D-Pa., the lead sponsor in the Senate, said Wednesday, during a hearing of the Senate Finance Committee's Subcommittee on Taxation and IRS Oversight, which he chairs.

"That's more than bipartisan, that's outstanding around here," added Sen. Mike Enzi, R-Wyo., the subcommittee's ranking member. Sen. Richard Burr, R-N.C., a fellow subcommittee member and cosponsor of the bill, said he couldn't think of a reason that any member "would want to get in the way of this bill" at this point.

The Able Act could still be held up, however. Fights over amendments have derailed popular legislation in the Senate several times already this Congress. But with Senate Majority Leader Harry Reid and Minority Leader Mitch McConnell already signed on as cosponsors, advocates are optimistic that they'll avoid a floor fight.

Wandering Adults

Dan Morse writes at The Washington Post (h/t HP):

Every day in Montgomery, Laurie Reyes has a direct view of challenges facing families. She is a county police officer whose job is to help vulnerable residents’ caregivers. On average, Reyes says, two or three people with autism wander away from their homes every week.

The officer works with families to employ a “layered” approach to keep kids and adults safe: Identification bracelets, information letters given to neighbors, in-home therapists, alarm systems, electronic tracking bracelets. But even the best defenses don’t always work.
Reyes sees a difference between children who go missing and the adults who do so.

People are more apt to intervene when they see an 8-year-old walking down the street. But someone older or full-grown, even if acting erratically? People might drive right by, too intimidated to approach. [Unless the ASD adult is acting erratically, he or she looks like any other adult walking down the street.]

“If you have a little child, people are going to jump to help,” Reyes says. “That’s a huge dynamic.”

The officer has worked with families of autistic children for 10 years and has learned to broaden her duties. She trains patrol officers in the best ways to communicate with people who are autistic. She works with social workers to try to get kids and adults into programs.

And she’s even testified to support legislation that would prompt health insurance companies to pay for in-home alarm systems — asserting that in the simplest of terms, that can be a medical need. But to date, she’s gotten insurance payments for only two systems.
“It’s a fight to get that coverage,” Reyes says.

Diagnosis Bottleneck in Michigan

Rosemary Parker reports at MLive:

The state of Michigan delayed enacting autism coverage for children covered by Medicaid until April 2013, a year after the bills were signed into law; then, citing a lack of money, they limited eligibility to children under the age of 5.

Meanwhile, the state's largest private insurer, Blue Cross-Blue Shield of Michigan, required that to be eligible for coverage of autism therapies children must be diagnosed not by their pediatrician or psychologist, but by Board-certified Behavior Analysts at approved Autism Evaluation Centers — of which, in 2012, there were only three in the state, Schrum said.

With approximately 18,000 children believed to be suffering from autism in Michigan, "within weeks, all (of the existing evaluation centers) had a waiting list of 12-18 months," Schrum said.
"Between Medicaid and Blue Cross, the systems have created a bottleneck that prevents children from accessing services," Schrum said.

That kind of roadblock nearly shuttered the $1.7-million Great Lakes Center.

"It almost killed us the first year," Schrum said. Even with cut-backs and staff layoffs, it took until December 2013 for the Center to stop losing money, he said.

The situation has slowly improved. In July 2014, 10 centers were listed on the Blue Cross website as authorized to diagnose children with autism. Eight of those are on the east side of the state, and two in Grand Rapids.

Their waiting list? Although a few centers can schedule an initial appointment within several weeks, for many, the wait is much, much longer. At the University of Michigan Health System, "we're scheduling 12-18 months out," a receptionist said.

Hearings

Yesterday, the Subcommittee on Africa, Global Health, Global Human Rights, and International Organizations of the House Foreign Affairs Committee held a hearing on "The Global Challenge of Autism." Here are links to prepared statements:

• Mr. Jose H. Velasco, Vice President of Product Management and Head of Autism at Work Initiative SAP [full text of statement]
• Mr. Thorkil Sonne, Founder and Chairman, Specialisterne [full text of statement]
• Ms. Theresa Hussman, Board Member, Autism Society [full text of statement]
• Mr. Michael Rosanoff, Associate Director, Public Health Research, Autism Speaks [full text of statement]
• Mr. Ron Suskind, Author [full text of statement]

The day before, the Subcommittee on Taxation and IRS Oversight of the Senate Committee on Finance held a hearing on the ABLE Act. Robert D'Amelio, the father of two sons on the spectrum, testified for Autism Speaks:

An ABLE account would enable families like mine to save for housing, job supports, education, and other services without the fear of losing Social Security or Medicaid benefits. The current section 529 plans fall short for the many individuals with autism and other disabilities who cannot or choose not to go on to college. As much as anything else, the ABLE Act is about fairness. If Christi and I can use a college savings account to provide for our daughter Lindsey’s future, why can’t we use something similar to take care of Nicholas and Christopher?

ABLE Act Hearing

Autism Speaks reports:

The ABLE Act, which would allow tax-free savings accounts for people with disabilities, was warmly received today by a U.S. Senate committee which heard testimony from supportive witnesses, including Bob D'Amelio, a North Carolina advocate who spoke on behalf of Autism Speaks.

The hearing by the Senate Finance Committee's subcommittee on taxation and IRS oversight, was the first by Congress on the bill, S.313, which was introduced in February 2013. Sponsored by Sen. Robert Casey (D-PA), left the bill has 74 co-sponsors; the House version, HR.647, sponsored by Rep. Ander Crenshaw (R-FL), has 367 co-sponsors.

"No other bill in Congress has this level of bipartisan, bicameral support," said Casey, who chairs the subcommittee. "This level of support is a testament to the hard work of families and other disability advocates, many of whom are present here today. It is also reflects the importance of what the ABLE Act does."

The ABLE Act (Achieving A Better Life Experience) would mirror Section 529 college savings accounts by allowing families and individuals with disabilities to set aside tax-free savings to pay for housing, education, transportation, job support and other costs. Participants would not lose their Medicaid or Social Security benefits.

RFK Jr. and Autism One

At Left Brain/Right Brain, Matt Carey says that RFK Jr's biggest problem is not his commentary on thimerosal but his appearance at an Autism One event.

AutismOne is a staunch supporter of failed ideas like thimerosal and MMR cause autism. AutismOne is also a place that promotes the ideas that one can cure autism by chemically castrating disabled children, or making disabled children drink bleach or take bleach enemas until they pass their intestinal mucosa (which are relabeled as worms) and more.
...

While multiple outlets are taking turns pointing out that you have taken a very irresponsible stance on vaccines, I’ll just ask: Mr. Kennedy, did you spend anytime looking around AutismOne? If so–why the hell have you not come forward to distance yourself from the junk science that goes on there? Why the hell did you lend your family’s name to that operation? Your family basically built the special education system in our country. The National Institute of Child Health and Human Development is named for a relative of yours. And you are loaning that name to a convention where the keynote speaker abuses autism parents? Have you sunk so low that you are lending your family’s credibility to Andrew Wakefield? 

If you were unaware of what AutismOne is, shame on you for lending your name. If you are aware of these goings on, and don’t distance yourself, your stance on thimerosal is the least of your problems.

ABA Program in Iowa

The Des Moines Register reports on Iowa's $5 million program to support ABA, which passed last year and is now going into effect.

Most private insurance plans are reluctant to cover the therapy, which can cost more then $30,000 per year. Iowa's Medicaid program has long covered it for disadvantaged children or those with severe intellectual disabilities. But until recently, the state offered no help for middle-class autistic children with average intelligence. 

Legislators almost never earmark millions of dollars for a specific treatment for any illness or disorder. Rep. Dave Heaton, who spearheaded the proposal to make an exception, said the selling point was the prospect of helping autistic children get on track. 

"If these kids don't move toward living somewhat normal lives, when they become adults, they'll be under state care for the rest of their lives, and that's very, very expensive," he said. 

Heaton, a Mount Pleasant Republican who oversees spending on human-service programs, said legislators considered requiring private health-insurers to pay for the therapy, but determined it would be a tough sell. The prospect of adding a special Medicaid program to pay for a range of autism therapies seemed too expensive, Heaton said. 

Legislators instead decided to pay directly for Applied Behavior Analysis. "Of all the things that are out there, this has been the most successful approach," he said.

Student Documentary on Vaccines

The Los Angeles Times reports on Carlsbad High School students who made "Invisible Threat," a documentary about vaccines.

Some of the students initially believed vaccines and autism were linked, they said, but changed their minds as they researched. 

...

Complaints began to arise when a local newspaper reported that the students were tackling "the issue of immunizations." 

A blogger who saw the article contended that the movie, still a work in progress, was sure to be "propaganda." That led to a flurry of frightening phone calls and Internet comments directed at CHSTV, [parent adviser Lisa] Posard said.

Posard said she hadn't realized that vaccines were such a controversial subject. She and CHSTV teacher Douglas Green wanted to shut down production, she added. But the students, angered by what they saw as bullying, insisted on completing the film. 

The final version of "Invisible Threat," completed in spring 2013 but shown only to select audiences, took a strong pro-vaccine position.

Critics, who said they hadn't been allowed to see the movie, leaped back into action about a year later, when the film was set to be screened on Capitol Hill. 

Focus Autism and AutismOne organizations complained about the movie's Rotary Club backing and about the involvement of Dr. Paul Offit, a University of Pennsylvania pediatrician and immunization proponent. They argued that "Invisible Threat" was "scripted with industry talking points" and that the movie seemed to be the work of adults operating under false pretenses, not students.

The Complexity of Brain Science

At The New York Times, psychologist Gary Marcus writes:

Different kinds of sciences call for different kinds of theories. Physicists, for example, are searching for a “grand unified theory” that integrates gravity, electromagnetism and the strong and weak nuclear forces into a neat package of equations. Whether or not they will get there, they have made considerable progress, in part because they know what they are looking for.

Biologists — neuroscientists included — can’t hope for that kind of theory. Biology isn’t elegant the way physics appears to be. The living world is bursting with variety and unpredictable complexity, because biology is the product of historical accidents, with species solving problems based on happenstance that leads them down one evolutionary road rather than another. No overarching theory of neuroscience could predict, for example, that the cerebellum (which is involved in timing and motor control) would have vastly more neurons than the prefrontal cortex (the part of the brain most associated with our advanced intelligence).

But biological complexity is only part of the challenge in figuring out what kind of theory of the brain we’re seeking. What we are really looking for is abridge, some way of connecting two separate scientific languages — those of neuroscience and psychology.

State Education Agency Definitions of Autism

At Autism Research and Treatment, Malinda L. Pennington, Douglas Cullinan, and Louise B. Southern have an article titled "Defining Autism: Variability in State Education Agency Definitions of and Evaluations for Autism Spectrum Disorders." The abstract:

In light of the steady rise in the prevalence of students with autism, this study examined the definition of autism published by state education agencies (SEAs), as well as SEA-indicated evaluation procedures for determining student qualification for autism. We compared components of each SEA definition to aspects of autism from two authoritative sources: Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) and Individuals with Disabilities Education Improvement Act (IDEA-2004). We also compared SEA-indicated evaluation procedures across SEAs to evaluation procedures noted in IDEA-2004. Results indicated that many more SEA definitions incorporate IDEA-2004 features than DSM-IV-TR features. However, despite similar foundations, SEA definitions of autism displayed considerable variability. Evaluation procedures were found to vary even more across SEAs. Moreover, within any particular SEA there often was little concordance between the definition (what autism is) and evaluation procedures (how autism is recognized). Recommendations for state and federal policy changes are discussed.

RFK Jr. and Thimerosal

Keith Kloor writes at The Washington Post that RFK Jr. is getting the cold shoulder from mainstream political figures, even those on the left.

Sen. Barbara Mikulski listened impassively as Robert Kennedy Jr. made his case. He had to talk over the din in the marbled hallway just outside the Senate chambers, where he was huddled with Mikulski, two of her aides and three allies of his who had come to Washington for this April meeting. 

Kennedy, a longtime environmental activist and an attorney for the Natural Resources Defense Council, had thought Mikulski would be receptive to an issue that has consumed him for a decade, even as friends and associates have told him repeatedly that it’s a lost cause. But she grew visibly impatient the longer he talked.
...
The Maryland Democrat turned from Kennedy without a word. “I want to hear what you have to say,” Mikulski said, looking up at the lean man standing next to her. Mark Hyman, a physician and best-selling author, is Kennedy’s chief collaborator on a then-unpublished book titled “Thimerosal: Let the Science Speak,” which is scheduled to come out next week. The book argues that ethylmercury — a component of thimerosal — is harmful to human health. (Not so in trace amounts, scientific authorities have concluded.) 

“The bottom line,” Hyman said to Mikulski: “We shouldn’t be injecting a neurotoxin into pregnant women and children.” Thimerosal should be taken out of the flu vaccine, Hyman and Kennedy argued. 

Mikulski didn’t react, except to suggest they contact Sen. Bernie Sanders, who “cares about brain health” and oversees a related subcommittee.

Kloor reports that Sanders had a similarly cool reaction.

The Literature on Bullying

At the Journal of Autism and Developmental Disorders, Jessica Schroeder and colleagues have an article titled "Shedding Light on a Pervasive Problem: A Review of Research on Bullying Experiences Among Children with Autism Spectrum Disorders."  Some findings:

• Taken together, the studies reviewed confirm that children and youth with ASD are experiencing increased rates of perceived physical, verbal, and relational forms of bullying relative to the general population.
• The current review indicates that students with ASD tend to exhibit risk factors and lack protective factors associated with victimization in the general population. Many of these risk factors, and lack of protective factors, reflect characteristics or behaviours associated with a diagnosis of ASD and consequently place these children at high risk for victimization. Several studies of bullying and ASD have indicated that social exclusion, peer marginalization, and number of friendships are all related to rates of victimization within the ASD population.
• One important theme is school climate. At the classroom level, an anti-bullying environment and teacher training appear to be critical.

Transition: What We Know

At The Journal of Disability Policy Studies, Paul Wehman and colleagues have an article titled "Transition From School to Adulthood for Youth With Autism Spectrum Disorder: What We Know and What We Need to Know."  The abstract:

Youth with autism spectrum disorders (ASD) experience poor outcomes in the areas of independence, employment, and postsecondary education. This article provides a critical review of the key aspects of the transition process and identifies recommendations for policy and practice. The review highlights the literature and explores recommendations across the manifold elements of this transition, including social and psychological development, high school curriculum, work, and college. Five policy recommendations are outlined in the areas of school curriculum, employment development, postsecondary education, inclusion with nondisabled peers, and systematic instruction. Finally, the authors offer recommendations for further research in the areas of social interaction, increased academic and vocational rigor, employment, technology, independence, and postsecondary education.

From the article:

A major finding of this selected literature review is that youth with ASD have significant untapped potential that has been underappreciated. In reviewing research articles and papers related to program demonstrations, one can look at findings from a deficit-driven approach or a more positive constructive approach. Clinical experience combined with this literature review leads to the conclusion that youth with ASD have substantial untapped potential. For these students to achieve this potential, schools and community programs must partner earlier, more frequently, and more effectively with students with ASD and their families to develop the educational foundation that can change lives dramatically. These youth can either be pushed into sheltered workshops and adult activity centers or offered careers and real jobs in the workforce in businesses looking for reliable skilled labor (Wehman, Schall, Brooke, & McDonough, 2012). They can sit at home after school or open the doors of colleges (White et al., 2011). They can be isolated or they can access social media and create a network of hundreds, even thousands, of virtual friends. They can learn to navigate the community or they can be restricted to constant monitoring with day-in/day-out one-to-one staff control.

Wehman, P., Schall, C., Brooke, V., & McDonough, J. (2012, April 26). The effect of project SEARCH and supported employment on employment outcomes for adults with ASD. Lecture presented at the NARRTC, 2012. Annual Conference: Advancing and Sustaining Research in Disability and Rehabilitation, Alexandria, VA. 

 White, S. W., Ollendick, T. H., & Bray, B. C. (2011). College students on the autism spectrum: Prevalence and associated problems. Autism, 15, 683–701.

Autism Speaks NC Ad Campaign

From Autism Speaks:

Autism Speaks, the world’s leading autism science and advocacy organization, today announced the launch of newspaper advertisements supporting families affected by autism in their fight towards autism insurance reform in the North Carolina Legislature. The North Carolina House twice in two years has passed reform bills, but the Senate has refused to take up the issue.

The ads lay out the medical and economic facts of applied behavior analysis (ABA) that have been misrepresented by Blue Cross Blue Shield and other opponents to autism insurance reform in this year’s short session. They also highlight the overwhelming 82 percent public support for this legislation in recent polling.

 

Report on Special Education

From the New America Foundation:

In Federal Funding for Students with Disabilities: The Evolution of Federal Special Education Finance in the U.S., New America provides a history of special education financing in the U.S., and highlights the latest shift in the mission of the IDEA funding formula: a change from providing dollars directly based on the number of special education students, to ensuring the federal government provides sufficient resources for those students without encouraging the over-identification of children as requiring special education--mainly by cutting out financial incentives to do so. The report describes in detail the twists and turns of the decade-old federal IDEA formula still in use today, including several politically driven provisions that distort IDEA allocations on behalf of some states at the cost of funding for children in other states.

Furthermore, an analysis of New America’s Federal Education Budget Project data on federal special education allocations by school district revealed that the formula used to distribute federal IDEA dollars results in uneven per-child funding across school districts and states. Smaller districts, as well as districts within the smallest states, have higher median per-child spending. Similarly, districts that have seen declining enrollment since the base year of funding, which hasn’t been updated in well over a decade, receive higher average per-child IDEA allocations.

The first-of-its-kind analysis of school district-level special education grant allocations provides critical and previously unseen insights into the on-the-ground effects of lawmakers’ decisions in structuring the IDEA formula and in postponing its reconsideration. Furthermore, the report will be an important resource to policymakers, researchers, and advocates as Congress faces an upcoming debate over federal funding formulas in the IDEA reauthorization.

To read the full report, click here. For publicly available data on district-level allocations, download the file or look up your district at New America’s Federal Education Budget Project database. To view the full data files used in this analysis, download the folderhere.

Problems with Driving

A release from Drexel University reports on the he first pilot study asking adults on the autism spectrum about their experiences with driving.

Only a few previous studies have examined driving ability in individuals with autism, and those studies focused on adolescents and new drivers rather than experienced adult drivers. These studies relied on parent surveys and evaluations of discrete aspects of driving performance. The new Drexel study, published early online this month in the Journal of Autism and Developmental Disorders, used a validated survey that has been extensively used in driving research, and asked adult licensed drivers on the autism spectrum to describe their first-hand, real-world driving experiences.

“We were beginning to see discussion in the research literature that aspects of autism spectrum disorders, such as neurocognitive challenges and social recognition difficulties, could make it likely that members of this population would experience significant challenges with driving,” said the study’s lead author Brian Daly, PhD, an assistant professor of psychology in Drexel’s College of Arts and Sciences. “But that assumption hadn’t been studied in adult drivers, or based on the experiences of the drivers themselves – so these were the questions we explored.”

In this survey, adults with autism spectrum disorders reported earning their drivers’ licenses at a later age, driving less frequently and putting more restrictions on their own driving behaviors (such as avoiding driving on highways or at night), on average compared to non-autistic adults. The respondents with autism spectrum disorders also reported more traffic violations.

...

One intriguing finding that Daly and Schultheis noted was that the difficulties adults with autism reported were not clustered in any specific areas, such as problems related to social processing of other drivers’ or pedestrians’ expected behaviors, or difficulties with neurocognitive aspects of driving such as motion perception and reaction time.

“It suggests that the challenges these individuals are facing are more global than specific,” Daly said.

“This is such an important study,” said Paul Shattuck, PhD, an associate professor and director of the research program area in life course outcomes at the A.J. Drexel Autism Institute, who was not involved in conducting the study. “Cognitively-able adults on the autism spectrum face many barriers to full participation in society. Facilitating access to transportation options will increase the capacity for these adults to contribute to their communities.”

Daly and Schultheis are continuing to investigate driving behavior in adults with autism through further research, with funding from the A.J. Drexel Autism Institute, the first autism research center focused on a public health science approach. In the next phase of research, the team is using driving simulation in Schultheis’ lab to objectively capture aspects of actual driving performance in adults on the autism spectrum. Individuals interested in enrolling in these studies should contact schultheis@drexel.edu.

Stem Cell Trial

From SFARI:

A team at Duke University in Durham, North Carolina, is set to launch a $40 million clinical trial to explore stem cells from umbilical cord blood as a treatment for autism. But experts caution that the trial is premature.

A $15 million grant from the Marcus Foundation, a philanthropic funding organization based in Atlanta, will bankroll the first two years of the five-year trial, which also plans to test stem cell therapy for stroke and cerebral palsy. The autism arm of the trial aims to enroll 390 children and adults.

Joanne Kurtzberg, the trial’s lead investigator, has extensive experience studying the effectiveness of cord blood transplants for treating various disorders, such as leukemia and sickle cell anemia1. Most recently, she showed that cord blood transplants can improve the odds of survival for babies deprived of oxygen at birth. A randomized trial of the approach for this condition is underway2.

“To really sort out if [stem] cells can treat these children, we need to do randomized, controlled trials that are well designed and well controlled, and that’s what we intend to do,” says Kurtzberg, professor of pediatrics and pathology at Duke. “We firmly believe we should be moving ahead in the clinic.”

Early animal studies have shown that stem cells isolated from umbilical cord blood can stimulate cells in the spinal cord to regrow their myelin layers, and in doing so help restore connections with surrounding cells3. Autism is thought to result from impaired connectivity in the brain. Because of this, some groups of children with the disorder may benefit from a stem cell transplant, Kurtzberg says.

But others are skeptical of the approach. Autism is a complex disorder with many possible causes. Also, it’s unclear how stem cells derived from cord blood can improve connections in the brain. Given these important caveats, it’s too soon to conduct a test of this scale and investment, some experts say.

“It’s probably premature to run large trials without evidence that they have a therapeutic effect that [we] understand,” cautions Arnold Kriegstein, director of the Broad Center of Regenerative Medicine and Stem Cell Research at the University of California, San Francisco.

Sexual Politics, Autism, and Research Funding

At National Geographic, Virginia Hughes writes about the sexual politics of autism research:

I’m thinking about all this now thanks to a paper published this week in the journal BioSocieties. In it, science historian Sarah Richardson of Harvard University and her colleague Eva Gillis-Buck argue that autism’s male bias has been greatly exaggerated. What’s more, they say, autism’s purported sex differences are often exploited by scientists outside of the autism field who want to take advantage of the recent influx of funding directed specifically at autism research.

And this whole situation, Richardson and Gillis-Buck worry, is not only bad for our understanding of autism, but is fueling unfounded cultural stereotypes. “Giving the gloss of scientific integrity to claims that autism is a disorder of gender I think contributes, mostly unintentionally, to negative stereotypes about women’s innate capacity for math and science,” Richardson says.

...

She also found 442 studies related to autism and sex differences that have been published since 1980. Of these, 86 percent came out after 2001, and 10 percent were authored by Baron-Cohen. The rest came from laboratories in a variety of fields, including endocrinology, genetics, brain imaging, and molecular biology. Since 2001, animal research on this topic has exploded.

This is all evidence, Richardson says, that autism has become a “biomedical platform” for scientists of all stripes who are looking for funding, particularly in this era of shrinking science budgets.

“We show how, over time, researchers have begun to link their very basic research — even if it’s on nematodes — to frame it as a contribution to autism,” she says. “In the funding and publication structure, there’s been a real shift toward opportunistically using extreme-male-brain-type theories to gain research funding.”

Trouble with Community Residences in Georgia

On June 24, Georgia Health News reported (h/t EB):

Nearly 10 percent of the 480 people with developmental disabilities who have moved out of state hospitals since July 2010 have died after their placement in community residences.

Chris Bailey, a spokesman with the Georgia Department of Behavioral Health and Developmental Disabilities, when asked about deaths after hospital transfers, said 44 occurred from mid-2010 to early May.

On Sunday, Alan Judd, in an Atlanta Journal-Constitution article, described horrific incidents of abuse or neglect following the transfers of these patients into group homes. Forty patients placed in group homes have died, Judd reported, with 30 of those deaths classified as unexpected.

Many of the deaths appeared to be from natural causes, Judd reported.

The article also said officials documented 76 reports of physical or psychological abuse, 48 instances of neglect and 60 accidental injuries.

In March, an independent reviewer reported that Georgia was failing to provide adequate supervision of individuals with developmental disabilities who had been moved from state hospitals to community group homes.

That report, by Elizabeth Jones, came as an update to a groundbreaking 2010 settlement between the state of Georgia and the U.S. Justice Department. Under the terms of that deal, Georgia agreed to establish community services for about 9,000 people with mental illness, and to create community support and crisis intervention teams to help people with developmental disabilities and mental illness avoid hospitalization.

AP provides background:

In the June 22, 1999, decision in Olmstead v. L.C., the justices ruled that unnecessarily segregating people with disabilities in institutions amounts to discrimination under the Americans with Disabilities Act if they can be cared for in more home-like settings. Advocates for the mentally ill, older people and the physically disabled regularly cite the ruling, but it has limitations. It says individuals should be "reasonably accommodated," specifically noting "the resources available to the state," caveats that have made it difficult to assess compliance and that have fueled widely different outcomes around the country.

Nationally, the share of Medicaid long-term care spending that went to home and community services was 28 percent at the time of the ruling, according to a Department of Health and Human Services report. By 2012, the latest year for which data were tallied, the figure had risen to 50 percent, according to the Centers for Medicare and Medicaid Services. Every state has increased its allocation to non-institutional services, but the allocations range from 78.3 percent of Medicaid spending in Oregon down to 27.4 percent in Mississippi and New Jersey.

The ruling offers no guidance on the allotment of funds. Many advocates argue that states could allow all individuals to be treated at home or in community-based settings such as group homes. The industry says there will always be some people who require or prefer institutional care.

Voting Rights Complaint in Los Angeles County

From the Disability and Abuse Project:

This Disability and Abuse Project of Spectrum Institute has filed a voting rights complaint with the United States Department of Justice. It alleges that the Los Angeles Superior Court has routinely and systematically engaged in activities that violate the civil rights of people with developmental disabilities.

Violations of the Voting Rights Act and the Americans with Disabilities Act are alleged in the 100-page complaint. Victims are identified as adults who have had or who will have a limited conservator appointed by the Probate Court.

Limited conservatorships are a form of adult guardianship. Petitions for limited conservatorship are generally filed by parents or other relatives of adults with developmental disabilities because the parent or relative believes the adult in question lacks the capacity to make decisions in one or more major life areas: financial, medical, educational, marital, sexual, or social.

The issue of capacity to vote is raised in each new case after a petition for conservatorship is filed. A test is used by petitioners, attorneys, court investigators, and judges to decide whether a conservatee should be disqualified from voting.

The test is whether the adult in question is able to complete an affidavit of voter registration. Judges have told attorneys who represent people with developmental disabilities that the adult must be able to complete the affidavit on his or her own and may not have someone else fill out the form for them.

The federal Voting Rights Act prohibits states from using any test to determine eligibility to vote. The federal Americans with Disabilities Act requires states to allow an adult with a disability to have someone help them in the voting process.

The Los Angeles Superior Court, including its investigators, judges, and court-appointed attorneys are ignoring the clear mandates of these federal laws. As a result, thousands of people with developmental disabilities have unnecessarily and improperly been denied the right to vote in Los Angeles County.

The complaint documents these illegal practices and asks the Department of Justice to intervene so that the voting rights of past victims are reinstated. It also asks the Attorney General to require the court to stop using a test for voter eligibility in the future. A successful resolution of this case has statewide and national implications.

Michael Blood writes at AP:

The complaint says judges in Los Angeles Superior Court use literacy tests to determine if adults in limited conservatorships should have voting rights, a violation of the federal Voting Rights Act. It also says that judges and court-appointed attorneys violate federal laws that allow people with disabilities to have assistance to complete voter-registration forms and cast ballots.

"Autism is a broad spectrum, and there can be low skills and there can be high skills. But what I observed was that people tend to just dismiss it as though they have no skills," Teresa Thompson, whose son has autism and whose case helped prompt the complaint, said in a videotaped statement.

More on the Prevalence Controversy

A previous post noted a recent critique of CDC prevalence estimates.

Disability Scoop gets a statement from CDC:

For their part, the CDC did not respond to an interview request, but defended its current approach in a statement to Disability Scoop. 

“CDC is committed to scientific integrity and a high standard of quality for the autism data that we report. There are different methods to estimate the number of children with autism, each with its strengths and limitations. CDC stands behind the (Autism and Developmental Disabilities Monitoring) Network’s autism tracking method for providing the most complete picture of autism in communities across the United States,” the statement said. 

Furthermore, a CDC spokeswoman pointed to a 2011 study published in the Journal of Autism and Developmental Disorders that the agency said backs its current surveillance methods, finding that the autism rate reported is likely a conservative estimate.

A Guide to Services in the States

From Autism Speaks:

 Federal officials today presented the first state-by-state autism guide on insurance and Medicaid coverage, service delivery, transition services and more. The guide represents a 2012 snapshot of autism in each state, but does not evaluate or compare the quality of services between states or identify best practices. 

Read the report here.   

Ata meeting of the Interagency Autism Coordinating Committee, Sonya Bowen with the Centers for Medicare & Medicaid Services (CMS) said the report took about three years to complete and set out to answer three questions for each state:

• What are states and/or local government doing to provide services for people with ASD?
• What are the types of services and supports that a person with ASD can access?
• How are these supports and services funded?

Medicaid and Behavioral Treatments

Autism Speaks reports:

In a major victory for Medicaid coverage of autism, a federal agency has directed the states to cover medically necessary treatments for autism for children and young adults, including behavioral health treatments such as Applied Behavior Analysis (ABA). An estimated one-third of all children with autism receive primary coverage through Medicaid. 

The announcement by the Centers for Medicare & Medicaid Services (CMS) makes clear that autism treatment must be addressed under Early and Periodic Screening, Diagnostic and Treatment (EPSDT) services which cover Medicaid-eligible children up to the age of 21. 

Dan Unumb, the executive director of the Autism Speaks Legal Resource Center, said the new CMS guidance "is extremely useful in providing a road map for Medicaid coverage of autism treatments, including ABA, and admonishing the states that their obligation to provide all necessary medical care under EPSDT applies with full force to children with ASD.”

IEPs in Louisiana

Disability Scoop reports:

Under a law signed by Louisiana Gov. Bobby Jindal late last month, IEP teams in the state will have the authority to exempt students with disabilities from passing standardized tests in order to receive a high school diploma or advance from one grade to the next. In such cases, IEP teams would determine “rigorous educational goals” for students to meet instead. 

Supporters say the measure will offer more students in special education the opportunity to earn a high school diploma. Critics, however, including some national disability advocacy organizations, have spoken out against the approach saying it will do nothing more than lower expectations. 

Now the law known as HB No. 1015 is drawing concern from the Obama administration. In aletter to Louisiana Superintendent John White, officials at the U.S. Department of Education said the measure may violate federal law and warned that the state could jeopardize its federal education funding if the law is implemented in a manner that’s inconsistent with the Individuals with Disabilities Education Act and other requirements.

One Gene, One Subtype

Jessica Wright writes at Scientific American:

CHD8, a gene that regulates the structure of DNA, is the closest thing so far to an ‘autism gene,’ suggests a study published today in Cell.

People with mutations in this gene all have the same cluster of symptoms, including a large head, constipation and characteristic facial features; nearly all also have have autism.

Autism is notoriously heterogeneous, perhaps involving mutations in any of hundreds of genes. Typically, researchers begin by studying people with similar symptoms and working backward to identify what causes those symptoms. But that approach has not been particularly productive.

“We’ve tried for so long to identify subtypes of autism based on behavior alone and we’ve done abysmally at that,” says lead researcher Raphael Bernier, associate professor of psychiatry at the University of Washington in Seattle.

The reverse approach — that is, beginning with people who all have mutations in the same gene and characterizing their symptoms — may prove to be more useful for simplifying autism’s complexity.

Worse Than Death?

At The Daily Beast, Emily Picciuto writes:

If people are still anti-vax in 2014, not only are they unswayed by strong evidence, they are also unmoved by reportage of outbreaks of vaccine-preventable illnesses. They laugh off the risk of their children’s death. They seem unbothered by the idea that even if their children fully recover from such illnesses, they may pass it to someone who might well be more vulnerable to its dangers. In fact, the more pro-vaxxers explain the evidence, the more intransigent anti-vaxxers are in their beliefs.

It would be bad enough if the only problems with anti-vaxxers were their resistance to evidence and their endangerment of their children and members of their community. There is, however, another, less discussed problem with their movement. It’s not a factual problem, but an ethical one.

Let’s pretend for a moment that the anti-vaxxers are right—that vaccines are linked with autism. Then their repeated exhortations to avoid vaccines suggest that autism is actually a fate worse than death. That autism is the worst thing that could happen to a child—worse even than the suffering and death that can accompany measles, mumps, polio, and diphtheria.

Peter Bell

The Times of Trenton reports:

Because more children these days get classified as autistic, and for other reasons experts do not yet fully understand, autism rates are soaring in New Jersey and elsewhere, but for Peter Bell, autism really hit the radar screen when his own son was diagnosed. 

“I got involved in autism advocacy entirely because I was recruited into it the hard way,” Bell said. His oldest son, Tyler, now 21, was diagnosed with autism in 1996. 

Bell is not just the father of a young adult with autism; he is the CEO of Eden Autism Services, a role he assumed in February. Before that, Bell was with Autism Speaks, the world’s largest advocacy and science organization for autism 

Eden Autism Services was founded in 1975 as a family-oriented school for children with autism 

In the last 30 years, it has expanded to an institution with a wide variety of programs and services for children and adults with autism, and also offers services and resources for their families.

Training ASD People for Police Encounters

Previous posts have described training for police in dealing with autistic people. At The Los Angeles Times, Sandy Banks describes training in the other direction:

Emily Iland spent decades advocating for her 30-year-old son, who has autism, his own apartment, a college degree and an accounting career.

Now, as part of the Autism Society of Los Angeles, Iland is trying to make sure young people like him, pushing for independence, don't wind up as law enforcement statistics.

Since 2007, Iland has been trying to teach Los Angeles Police Department officers how to recognize and interact with people who have autism spectrum disorders. Now she's trying to teach people with autism what to do if they are stopped by police:

Don't run or reach into your pocket. Stay calm. Show them your hands. If you're handcuffed or put into a patrol car, be quiet, be patient, be still. If you're arrested, tell the officers you have a disability and ask to talk to a lawyer.

Those are the basics of Iland's "Be Safe" campaign, which includes a DVD starring young people with autism role-playing police encounters, and a guidebook for parents, teachers and counselors.

New IACC Public Members

A July 2 release from IACC:

The Department of Health and Human Services today announced the appointments of Wendy Chung, M.D., Ph.D., and Robert Ring, Ph.D., as public members of the Interagency Autism Coordinating Committee (IACC), a federal advisory Committee composed of federal agency officials and appointed community stakeholders that provides coordination and a forum for public input on issues related to autism spectrum disorder (ASD). Prior to her departure, former HHS Secretary Kathleen Sebelius appointed Dr. Chung, Director of Clinical Research for the Simons Foundation Autism Research Initiative (SFARI), and Dr. Ring, Chief Science Officer of Autism Speaks, to join the IACC in order to provide additional perspectives and expertise to the Committee. Dr. Chung and Dr. Ring serve as leaders within the two organizations that are the largest private funders of autism research in the United States. Both organizations were previously represented on the Committee by individuals who were appointed in 2012, but who have since left or changed affiliation.

Dr. Insel, Chair of the IACC and Director of the National Institute of Mental Health, welcomed the expertise and dedication that Dr. Chung and Dr. Ring bring to the IACC. "Both Dr. Ring and Dr. Chung will be important additions to the Committee, given the depth of their scientific and clinical experience, and their dedication to improving the lives of people on the autism spectrum," he said.

Dr. Chung, in addition to directing clinical research at SFARI, served as a member of SFARI's scientific advisory board. Dr. Chung is also the Herbert Irving Associate Professor of Pediatrics and Medicine and the Director of Clinical Genetics at Columbia University College of Physicians and Surgeons, where she is the principal investigator for the Simons Variation in Individuals Project (Simons VIP), funded by the Simons Foundation.

Dr. Ring, who has been the Chief Science Officer of Autism Speaks since 2013, also serves as the Chairman of the Board of Delivering Scientific Innovation for Autism (DELSIA), the venture philanthropy arm of Autism Speaks, and leads Autism Speaks' collaboration with the Simons Foundation to launch the Autism BrainNet, a privately-funded multisite brain banking effort, focused on supporting autism research. Dr. Ring previously served as Autism Speaks' Vice President of Translational Research. He holds adjunct faculty appointments in the Departments of Psychiatry at Mount Sinai School of Medicine and Pharmacology and Physiology at Drexel University College of Medicine. Prior to his work at Autism Speaks, Dr. Ring served as Senior Director and Head of the Autism Research Unit at Pfizer Worldwide Research and Development and worked in the area of psychiatric drug discovery at Wyeth Research.

These two new members of the Committee will serve for the remaining months of IACC activity under the Combating Autism Reauthorization Act of 2011, which will expire on September 30, 2014. If reauthorized, the IACC will be open for nominations of new potential public members in late 2014.

Caged

Many posts have discussed restraint and seclusion in school..  It happens at home, too. In Los Angeles, KTLA-TV reports:

The parents of an 11-year-old boy with autism so severe he cannot speak were arrested after police allegedly found him living in a dog kennel inside a home in Anaheim, authorities said Wednesday.

Officers were called to a residence in the 1300 block of Garrett Street (map) at about 6:15 p.m. Tuesday to help Child Protective Services investigators who had received a tip that a young boy was living inside a cage, according to Lt. Bob Dunn with the Anaheim Police Department.

After talking with the parents, officers went inside the home and discovered a fairly large cage, described as a “large dog kennel” containing a mattress, the Police Department stated in a news release.

It appeared the parents had been keeping their son inside it, possibly because the boy was prone to violent outbursts, Dunn said. He emphasized the investigation was in its preliminary stages.

“Perhaps, as a part of his autism, he would have outbursts on occasion. As he’s grown older, the parents had difficulty adapting to these outburst and controlling them,” Dunn said.

“Putting him in that cage may have been a way for them to try to, in their way, control what was going on,” he said.

The boy appeared clean and to have been well cared for otherwise, and did not have any visible injuries, according to Dunn.

DSM and SCD

At  The Chicago Tribune, Wendy Donahue writes:

The previous edition of the DSM included three distinct subgroups under the broad definition of ASD: autistic disorder (AD), Asperger's disorder and pervasive development disorder-not otherwise specified (PDD-NOS).

The latest edition of the manual eliminates those subgroups. It adds a new subcategory called social communication disorder (SCD) to diagnose people who have verbal and nonverbal communication impairments but lack other attributes associated with autism.

Some people diagnosed with PDD-NOS under the old manual would be identified as people with SCD under the new manual.

Some states are "grandfathering in" those diagnosed under the old criteria so they don't lose insurance coverage, said Genevieve Thornton, a clinical psychologist and owner of SociAbility in Northbrook, Ill., which offers programs and therapy for children and adults with ASD, ADHD and related conditions.
...
In recent years, many states have mandated that insurance companies cover applied behavior analysis, delivered by a board-certified behavior analyst, for people diagnosed with an ASD, said Dr. Jeff Skowron, a licensed psychologist and clinical director for Autism Intervention Specialists in Worcester, Mass.

As insurance companies adapt to the diagnostic changes, he said, some plans may not cover services for the new social communication disorder. That could lead to inappropriate diagnoses to enable the person to obtain treatment.

Vaccine Safety

Margaret A. Maglione and colleagues have an article in Pediatrics titled "Safety of Vaccines Used for Routine Immunization of US Children: A Systematic Review."

The abstract [links and emphasis added]:

BACKGROUND: Concerns about vaccine safety have led some parents to decline recommended vaccination of their children, leading to the resurgence of diseases. Reassurance of vaccine safety remains critical for population health. This study systematically reviewed the literature on the safety of routine vaccines recommended for children in the United States.

METHODS: Data sources included PubMed, Advisory Committee on Immunization Practices statements, package inserts, existing reviews, manufacturer information packets, and the 2011 Institute of Medicine consensus report on vaccine safety. We augmented the Institute of Medicine report with more recent studies and increased the scope to include more vaccines. Only studies that used active surveillance and had a control mechanism were included. Formulations not used in the United States were excluded. Adverse events and patient and vaccine characteristics were abstracted. Adverse event collection and reporting was evaluated by using the McHarm scale. We were unable to pool results. Strength of evidence was rated as high, moderate, low, or insufficient.

RESULTS: Of 20 478 titles identified, 67 were included. Strength of evidence was high for measles/mumps/rubella (MMR) vaccine and febrile seizures; the varicella vaccine was associated with complications in immunodeficient individuals. There is strong evidence that MMR vaccine is not associated with autism. There is moderate evidence that rotavirus vaccines are associated with intussusception. Limitations of the study include that the majority of studies did not investigate or identify risk factors for AEs; and the severity of AEs was inconsistently reported.

CONCLUSIONS: We found evidence that some vaccines are associated with serious AEs; however, these events are extremely rare and must be weighed against the protective benefits that vaccines provide.

In the same issue, Carrie Byington writes:

The relationship between parents of young children and their medical providers is powerful. Parents trust their child’s doctor over government officials, family members, or celebrities as the best source of information on vaccine safety.16,17 Furthermore, there is concordance between the beliefs of parents and the beliefs of their child’s health provider about vaccine  safety.18  Importantly, data also demonstrate that for parents who are hesitant to immunize their children but who ultimately do so, it is the physician’s recommendation that is most often cited as the reason they chose to vaccinate. Clinicians can examine the nonbiased data presented in the IOM report and the report by Maglione et al to increase their own confidence in vaccine safety and their advocacy for vaccines. Ideally, provider confidence in vaccine safety will increase the confidence of the families they serve and increase vaccination rates for children, safeguarding the health of the nation.

16. Freed GL, Clark SJ, Butchart AT, Singer DC, Davis MM. Sources and perceived credibility of vaccine-safety information for parents. Pediatrics. 2011;127(suppl 1):S107–S112
17. McCauley MM, Kennedy A, Basket M, Sheedy K. Exploring the choice to refuse or delay vaccines: a national survey of parents of 6-through 23-month-olds. Acad Pediatr. 2012; 12(5):375–383
18. Mergler MJ, Omer SB, Pan WK, et al. Association of vaccine-related attitudes and beliefs between parents and health care providers. Vaccine. 2013;31(41):4591–4595