New Hampshire Laws, Insurance, Seclusion & Restraint

Richard A. Cohen and Julia Freeman-Woolpert of the Disabilities Rights Center in Concord NH discuss recent legislation in their state:

Vulnerable children with disabilities got a little safer with the passage of Senate Bill 396, limiting the use of child restraint practices in schools and treatment facilities.

The Disabilities Rights Center has handled a number of disturbing cases recently where children suffered broken bones and other injuries in school and other facilities while being restrained. Expert testimony in support of SB 396 demonstrated that face down restraint can put children at risk of death. Indeed around the country children have died as a result of this type of restraint. The new law bans many dangerous restraint techniques and restricts the use of other types to only emergency situations where the physical safety of the child or others is at risk. The bill also limits handcuffing of children being transported or appearing in court. Gov. Lynch and the New Hampshire Legislature should be commended for passing the bill.

Families of children with autism rejoiced at the passage of House Bill 569, more commonly known as Connor’s Law. The law requires that private health insurance plans in New Hampshire cover prescribed treatments for autism, including speech, occupational, and behavioral therapy.

Early and intensive treatment for autism can improve the outcomes enormously for these children, much as insulin can for a child with diabetes and heart surgery can for a child with a heart condition, yet until this law was passed, the child with autism could be denied insurance coverage for treatment. Michelle Jarvis, Connor’s mother and President of the Autism Society of New Hampshire, noted, “All along, our message has been that a child with autism deserves the same level of coverage as a child seeking treatment for any other medical condition. To do any less would not only be poor healthcare policy, it would be discriminatory.”

More on seclusion & restraint:

• See an earlier story on SB 396.
• See a story on problems in Maine.
• See a story about a court case in Florida.

The Case Against the New York Bill

A previous post described a positive view of the mandate bill that the New York Legislature has sent to Governor Paterson. The Autism Action Coalition, a New York group that takes an antivaccination stance, opposes the measure. Thomas Abinanti, an autism dad and Westchester County legislator who has also raised concerns about vaccines, makes the case against the bill:

First, S.7000 repeals some of the 2006 nondiscrimination protections.

Second, S.7000 does not specify any treatments that must be covered as is done in many other states. Instead, S.7000 establishes a cumbersome process by which four state agencies with differing agendas are to decide which treatments health insurers must cover — a determination that will override local doctors' prescriptions for other medically necessary treatments.

Third, S.7000 sets an unreasonable three-part standard for the four state agencies to apply — tougher than any other in the country — that appears to exclude almost all of the standard treatments that our kids regularly receive.

Fourth, S.7000 may complicate the counties' ongoing efforts to recover insurance reimbursements for taxpayer-funded autism treatments in Early Intervention programs.

Intellectual Property and Access to Research

The Chronicle of Higher Education reports:

Advocates for public access to federally funded research made their case before a U.S. House of Representatives subcommittee on Thursday, while publishers' representatives urged lawmakers to proceed with caution for fear of putting U.S. intellectual property—and publishers' livelihoods—at risk.

...

The subcommittee first heard from publishers' representatives. Allan R. Adler, vice president for legal and governmental affairs for the Association of American Publishers, whose members include both trade and scholarly publishers, argued that it is critical to distinguish between federally financed research and journal articles based on that research, which he described as partly the product of publishers' labor. He repeated arguments often made by publishers about how their work enhances the value of research, and said that the 12-month embargo under the NIH policy is often not enough for publishers to recoup their investment.

...

Countering those arguments, a panel of scientists and patients' advocates made the case for strong federal public-access policies. Richard J. Roberts, chief scientific officer at New England Biolabs, a company that makes biological reagents, won the 1993 Nobel Prize in Physiology or Medicine for his discovery of split genes. He argued that scientific progress depended on timely access to published research.

"Because scientific research critically depends on knowledge of the scientific literature and building on the work of others, access to this literature is the key to progress," Mr. Roberts told the subcommittee. "In my view, the open-access movement is one of the single most important initiatives currently under way within the scientific community."

Mr. Roberts was joined in his support for greater public access by patients' advocates, including Sophia Colamarino, vice president for research at Autism Speaks, and Sharon F. Terry, president and chief executive of Genetic Alliance, which promotes partnerships and information sharing to help people with genetic disorders.

Here is an excerpt from Dr. Colamarino's statement:

In today’s information age, where essentially anything said by anyone can be made accessible within a matter of moments, it is unfortunate that families have easy access to all BUT the most scientifically valid information, that which can be found in scientifically reviewed research literature. Perhaps twenty years ago, when we still relied on the slow transfer of information through printed format, restricting access to a subset of knowledge had less of an impact. In 2010, families are inundated with information that may not always be credible, and yet they are unable to read the most scientifically rigorous data. It’s time for that to change.

New Hampshire Insurance Law

AP reports:

New Hampshire Gov. John Lynch has signed a law requiring insurers to cover more treatment programs for autistic children.

The new law requires covering behavioral, speech and occupational therapy along with already covered medications, health-related services and psychiatric services when they are part of a plan ordered by a doctor.

More from ASA:

The Autism Society of New Hampshire is pleased to report that autism insurance reform was signed into law by Gov. John Lynch on July 23, 2010, making New Hampshire the 22nd state to pass autism insurance reform.
HB 569-FN (“Connor’s Law) was passed by the New Hampshire Senate on May 5, 2010, after successfully moving through the New Hampshire House on January 6, 2010.

The Autism Society applauds the hard work and dedication of Sen. Margaret "Maggie" Wood Hassan, Rep. Suzanne Butcher, Rep. Susi Nord, Administrative Director of the NH Council on Autism Spectrum Disorders Kirsten Murphy, ASNH President Michelle Jarvis, and countless others in the Granite State that were instrumental in getting “Connor’s Law” passed.

HB 569 is not a new mandate, but rather, the legislation clarifies what “treatment” means under NH’s existing mental health parity law as it is applies to autism spectrum disorders. Treatments that will be covered include habilitative or rehabilitative care, pharmacy care, psychiatric care, psychological care and therapeutic care. It requires insurance companies to cover treatment when prescribed or ordered by a medical professional following the guidelines adopted by the American Academy of Pediatrics and other professional groups. Just like any illness, treatment will be subject to periodic review for medical necessity. There is a maximum benefit of $36,000 for children younger than 1 year old to age 12 and a maximum benefit of $27,000 from age 13-21. Furthermore, HB 569 does not replace existing services. While special education programs may use some of the same types of therapies to help a child learn, this is not done at the same level of intensity or with the same goals as a treatment program. HB 569 states clearly that it should not be interpreted as reducing the obligation that schools have to deliver a free and appropriate education.

Massachusetts Mandate

The Massachusetts House yesterday passed an insurance mandate bill. The Boston Globe reports:

The proposal, which now goes to the Senate, contains mandated coverage for services known as “applied behavioral analysis,’’ which include training children with autism and related disorders in social, verbal, and motor skills.

A broad coalition of business groups, insurers, and the Group Insurance Commission, which provides insurance to more than 300,000 state and municipal employees and their families, sent a letter to lawmakers yesterday opposing the bill.

It said there is “limited rigorous research’’ on the effectiveness of such autism services and said that the cost of the services, which are often provided at public schools through special education classes, would be shifted instead to the private market, falling heavily on small- and medium-size employers through their workers’ insurance premiums. Larger employers are not subject to state insurance mandates and would not be required to pay for these services.

“I worry about mandates that are added in a time of fiscal constraint and that are for relatively new treatment modalities,’’ said Dolores Mitchell, executive director of the Group Insurance Commission.

Mitchell said that her budget for the new fiscal year has already been set and that a new mandate would force her to seek additional state funds.

A financial analysis of the bill in March by the state’s Division of Health Care Finance and Policy estimated the mandated coverage would boost annual spending for each insured person by between $14.64 and $29.40.

But supporters say the measure would probably add just 83 cents a month, or about $10 annually to each person’s insurance costs, based on a similar law passed in Minnesota in 2001.

ABA in Ireland

Tish Durkin writes in The Irish Times:

Initially administered one-to-one, ABA is also very expensive. Moreover, in Ireland, ABA has been poorly explained and thus widely misunderstood. Presumably all this is why, even before winning a landmark 2007 High Court case, the State had all but declared ABA the enemy – and why it is so eager to declare victory now. After three years of negotiations over the permanent status of 13 ABA schools, the DES recently gave these autism-specific education centres only about two weeks to accept or reject the terms under which it proposed to convert them into State special-needs schools.

...

To its credit, the Government does fund home tutoring for very young autistic children, something that most families could not dream of affording otherwise. Bizarrely, though, the DES conditions this funding on the parents’ hiring ordinary schoolteachers to do the tutoring. In other words, the Government actively pushes for autism programmes to be run by people who most often know nothing about autism. Here again, madness. It’s like the State agreeing to pay for heart transplants – provided they are performed by gynaecologists.

• See an earlier story here.
• See Irish Autism Action's website and its YouTube Channel

Pediatric Subspecialties

Dr. Dennis Rosen writes in The New York Times

There are plenty of general pediatricians in the United States — about 70 per 100,000 children. But according to the American Board of Pediatrics, there are only 751 practicing pediatric pulmonologists in the country: one for every 100,000 children. In four states — Alaska, Idaho, Montana and Wyoming, where more than 941,000 children live — there are none. Even in Massachusetts, the state with the highest ratio of pediatric pulmonologists to children in the country (2.6 for every 100,000 children), the wait for an appointment is often several months.

The numbers are similar for other pediatric subspecialties, leading to a shortage of doctors trained to treat problems many children face, like asthma, digestive issues and cancer. And not only are the current subspecialists aging (the average age of pediatric pulmonologists is 52.4), but few pediatric residents are choosing to undergo subspecialty training at the end of their residencies.

In the case of autism, developmental pediatricians are especially important. See an earlier post on shortages. Also see this video:

Higher Education and Section 504 Accommodation Plans

Kerry Magro, an ASD student at Seton Hall University, writes at the Austism Speaks blog:

Before this day happened however all new incoming freshman had to attend a summer “Orientation Period.” During this period we would have the chance to spend the night in the freshman dorms, receive our laptops and also get to meet several faculty members at the school. In addition to this, I had one additional separate meeting that most of the other freshman didn’t – an accommodation meeting with The Director of Disability Support Services at SHU. This is when the ball dropped for me.

During the meeting I learned many intriguing and frightening things about how college was going to be a huge difference from high school; the main difference for me was going to be “The IEP.” When I asked what the difference would be, I was told the difference was I would not have one. I can’t believe I was that oblivious that this was going to happen. Later, I learned that under the Individuals with Disabilities Education Act (IDEA) the IEP only exists K-12th grade. At the college door you get a Section 504 accommodations plan.

In college, you only receive “reasonable accommodations” to help make the classes accessible to those specific students with disabilities. The bottom line: there is no plan for you. The only way to receive what you need is by being independent and advocating for your needs. But what does anyone need? If you are a freshman and have autism how do you explain what you need?

See also:

• Wrightslaw page on accommodations for college students
• Report to the speaker of the Pennsylvania House on preparing ASD students for college
• Information from the US Department of Education

Higher Education for ASD Students in Wales

The Free Press reports:

STUDENTS with Asperger's syndrome are to benefit from a new specialist learning centre in Torfaen.

Priory Coleg Wales opens at Coleg Gwent's Pontypool campus in September, when ten students, aged between 16 and 25, will become the first to access more than 150 academic and vocational courses at the college.

It has classrooms, IT facilities, a therapy room, a learning kitchen and a dining room - all designed to provide retreat when students feel challenged by social situations in the mainstream education college.

See also:

• The National Autistic Society Cymru
• The All Wales Autism Resource
• A Welsh Assembly committee debate on autism:

West Virginia Mandate, Continued

The Morgantown (WV) Dominion Post (via Insurance News) reports:

A West Virginia-based cost-benefit analysis provided by consulting economist Jon Hockenyos, Resources for Hope, shows that with early and intensive intervention, 47 percent of those with ASD recover typical function, 40 percent make significant improvement and 13 percent make little progress.

Studies, he said, calculate lifetime expenses --direct and indirect medical and non-medical -- for children who recover typical function at $605,130. For children who receive no treatment, it's $3.4 million. The lifetime per capita societal cost of autism is $3.7 million.

The lifetime societal cost in West Virginia for all children with autism is $1.15 billion, based on only 603 people who might be covered by insurance, he said.

That figure might be low. Nationally, the experts said, about 1 in 110 children born are diagnosed with ASD; in West Virginia it's 1 in 91 births, with ASD for boys more prevalent, at 1 in 30. About 200 West Virginia children per year may be diagnosed.

In 2009 alone, Klingberg had 245 ASD referrals, and 132 were diagnosed, Poe said. The West Virginia Autism Training Center at Marshall U n ive r s i t y works with 1,918 families, said Executive Director Barbara Becker-Cottrill. Since 2004, it has registered anywhere from 150-200 new families per year. Its current clientele includes 93 in Monongalia County, 22 in Preston and 78 in Marion. Sixty percent are 18 or under.

Because autism isn't covered, services are rare in West Virginia, the experts said. Klingberg has a threemonth waiting list. It can be two years at Marshall, which recently got some funding and trimmed its list from 300 to 150 families.

The 23 states that mandate coverage have far more care available, Becker-Cottrill said. Pennsylvania has 484 board certified behavior analysts; Florida has 1,308; New Jersey has 393.

West Virginia has 18.

After South Carolina passed a coverage law, the number of analysts jumped from 18 to 65.

"This creates a job market," she said.

Parental Stress

Mara Gay writes at AOL News:

"I wish I could convey to you what it is like to raise a child on the [autism] spectrum who is escaping the house," Mara LaViola, whose son has autism, told WFAA Dallas. "You find them on top of your kitchen cabinets. Breaking things. Throwing things. Most of the time it's because they're trying to communicate and they're not able to."

But the parents are offering no excuses for Saiqa Akhter, 30, who allegedly dealt with that stress by killing her 5-year-old son, Zain, and her 2-year-old daughter, Faryaal.

"Children are not appliances that come with warranties and guarantees," [Kim] Stagliano wrote on her Age of Autism blog Wednesday afternoon. "Some have autism." But the Fairfield, County, Ct. mom said she's able to cope because she has a great support network that she can talk to. "I assume this woman in Dallas did not have any support network," she said. "It can be really lonely."

CNN adds:

Several research studies have found that mothers of children with autism have higher levels of psychological and parenting-related distress than other moms of children with developmental delays.

It can be overwhelming, said Marguerite Colston, vice president of the Autism Society, which has local chapters throughout the country.

"Once you get a diagnosis, you can't be a parent, you have to be a case manger, an education specialist," she said. "You've got to figure out the medical system. It's overwhelming to think I have to advocate and navigate the system. The level of stress is terrifying."

"Our nation doesn't have the system to support the parents. The services are not there to match the needs."

...

The pressure is not limited to minority communities, as parents of children with autism experience anxiety and depression regardless of their socioeconomic group or race, said Dr. Wendy Stone, director of the University of Washington Autism Center in Seattle.

"Parents who have less access to information, resources or to a community of parents who have similar experiences or needs are clearly going to have a more difficult time managing both their child and their own health," she said.

Mandate Legislation in West Virginia

West Virginia Public Broadcasting reports:

Legislators continued meeting at the Capitol Wednesday as part of their monthly interim committee meetings. They are still discussing the possibility of a mandate requiring insurance companies to cover children with autism.

...

There also aren’t a lot of treatment options in West Virginia. Dr. Barbara Becker-Cottrill runs the West Virginia Autism Training Center at Marshall University. It provides services to 1900 families, but doesn’t have the resources to offer intensive therapy to everyone....

“We do have some quality services, but we have way too few,” she said. “Right now, we have 150 families on our application list, meaning that they are sitting and hoping that their turn is going to come up next. We used to have up to 300 families waiting; we’ve cut it in half to 150. That’s still not good. No family should be waiting.”

...

Lorri Unumb says the states that have already instituted some form of autism coverage haven’t seen premiums skyrocket. She’s a senior policy analyst for Autism Speaks, and her home state of South Carolina passed an autism insurance bill in 2008.

“I have seen it successfully implemented,” she said. “Despite the doomsday predictions from the opponents that we hear in state after state, none of our insurers fled the state, none of our businesses closed up shop because of the addition of this benefit. Indeed, the impact on premiums has been negligible.”

Different states have passed bills that vary in the amount of coverage provided, but cost estimates range from 74 cents to $15 added on to the premiums of each member per month, according to the National Conference of State Legislatures.

McKinnon, Obama, and Cameron

The Gary McKinnon case came up in discussions between President Obama and Prime Minister Cameron. From their joint press conference:

Q Mr. President, Tom Bradby, ITV News. Quite a lot of people in the U.K. feel that your determination as a country to continue to push for the extradition of computer hacker and Asperger’s sufferer, Gary McKinnon is disproportionate and somewhat harsh. Do you think it is time now to consider some leniency in this case?

And, Prime Minister, you’ve expressed very strong views on this matter, suggesting that Mr. McKinnon shouldn’t be extradited. Your Deputy Prime Minister has expressed even stronger views. Did you discuss that with the President today? And if not, would now be a good moment to share your views with us once again?

PRIME MINISTER CAMERON: Shall I go?

PRESIDENT OBAMA: Please, go ahead.

PRIME MINISTER CAMERON: It is something that we discussed in our meeting. I mean, clearly there’s a discussion going on between the British and the Americans about this, and I don't want to prejudice those discussions. We completely understand that Gary McKinnon stands accused of a very important and significant crime in terms of hacking into vital databases. And nobody denies that that is an important crime that has to be considered. But I have had conversations with the U.S. ambassador, as well as raising it today with the President, about this issue, and I hope a way through can be found.

PRESIDENT OBAMA: Well, one of the things that David and I discussed was the increasing challenge that we’re going to face as a consequence of the Internet and the need for us to cooperate extensively on issues of cybersecurity.

We had a brief discussion about the fact that although there may still be efforts to send in spies and try to obtain state secrets through traditional Cold War methods, the truth of the matter is these days, where we’re going to see enormous vulnerability when it comes to information is going to be through these kind of breaches in our information systems. So we take this very seriously. And I know that the British government does, as well.

Beyond that, one of the traditions we have is the President doesn’t get involved in decisions around prosecutions, extradition matters. So what I expect is that my team will follow the law, but they will also coordinate closely with what we’ve just stated is an ally that is unparalleled in terms of our cooperative relationship. And I trust that this will get resolved in a way that underscores the seriousness of the issue, but also underscores the fact that we work together and we can find an appropriate solution.

FCC and Autism

FCC Chairman Genechowski spoke yesterday on the 20th anniversary of the Americans with Disabilities Act:

One item we’ll be looking at: how can digital technologies help children with disabilities with their education? Last week Blair Levin and Erik Garr, two leaders of our National Broadband Plan effort, drew attention to the opportunities of shifting to e-readers from paper textbooks. E-textbooks that can be personalized can bring enormous opportunities for children with disabilities – for example, children with hearing challenges, or autism. Our initiative will work with all stakeholders to explore seizing these opportunities.

In April, an FCC working paper noted:

For people with autism, on-line technologies have allowed the development of an independent autistic community and culture. One reason is that the challenges associated with interpreting non-verbal and social cues are less significant online. Having the opportunity to connect online with peers also allows people who have autism “to have an understanding that you are not alone in this world.”

Autism and the Environment

The Examiner reports that Dr. Philip Landrigan of the Mount Sinai Medical Center told the Interagency Autism Coordinating Committee (IACC) about the need for more research into autism's environmental causes.

Landrigan is one of the leaders of the National Children’s Study, which is expected to identify causes of autism and many other childhood disorders and diseases. The study will “examine the effects of environmental influences on the health and development of 100,000 children across the United States, following them from before birth until age 21.”

Landrigan has been investigating the effects of environmental toxicants on the development of children since the early 1970s when he determined that even very small levels of lead could affect cognitive ability.

His landmark work for the Centers for Disease Control and Prevention (CDC) resulted in the government banning lead from gasoline in 1976 and from paint in 1977, actions that decreased childhood lead poisoning in the U.S. by more than 90 percent.

Landrigan said genetic factors have only been proven to account for a small fraction of the cases of autism, raising the possibility that environmental causes are strongly associated with autism. Landrigan told the IACC that when the complex developing brain is interrupted by environmental insults such as lead, PCBs, or pesticides, it becomes extremely difficult if not impossible to repair.

It has been known for years that environmental toxicants are especially harmful to the developing brains of fetuses and infants, Landrigan said. A 1993 report by the National Academies Press, "Pesticides in the Diets of Infants and Children," stated that young children are not “little adults,” and they detoxify and excrete chemicals very differently than adults. It has also long been suspected that children with autism are more susceptible to environmental toxicants than other children.

In the April 2010 issue of Current Opinion in Pediatrics, Landrigan published “What causes autism? Exploring the environmental contribution,” and stated that “External exposures such as lead, ethyl alcohol and methyl mercury have been known to have an affect on the developing brain.” He wrote that a strong case exists for a link between environmental exposures in early pregnancy and autism, citing studies implicating certain prescription drugs such as Valproic acid and insecticides such as chlorpyrifos in the disorder.

See also mention of Dr. Landrigan in an earlier post.

New York Mandate - A Hopeful View

As an earlier post noted, reaction to New York mandate legislation has been mixed. From the Bedford-Katonah Patch, here is a hopeful view:

Lorey Leddy, who has a 9-year-old son with autism in the Katonah-Lewisboro schools, said she feels extremely fortunate to be in a school system with comprehensive services like speech, occupational, and behavioral therapy, but the districts are limited in what they can do for academic performance and educational achievement.

"The district just doesn't have the resources to provide the extensive social skills and behavior therapy that many autistic children need as they grow older," said Leddy. And before her son even entered the school system, they incurred steep diagnostic costs: $3,500 on a comprehensive evaluation to present to the school district.

Such expenses would be covered under the bill.

As her son grows toward adolesence, Leddy has sent him to private therapy at a cost of $1,400 per 14-week session, which supplements school therapies, to help with new social pressures he's experiencing.

"It can be tens of thousands of dollars in out-of-pocket expenses," she said. Not every family can do it, and not every family has the benefit of the K-L district's services, she added. "With school districts cutting back on special education services this new insurance coverage will be critical.

"

Horses and Autism Therapy

WICZ in Binghamton reports:

State legislators recently approved a measure that would require insurance companies to cover diagnosis and evidence-based treatments for autism spectrum disorders. Therapeutic riding and hippotherapy would not be included in the bill.

Catherine Markosky, Mason and Max's mom, is also the founder of Southern Tier Alternative Therapies. The organization awards scholarships to families to help them afford therapy sessions with horses. She says she's seen families' financial struggles firsthand.

"Parents are going broke paying for these and STAT is here to help assist with that and supplement that, but we couldn't find enough money in the world to support all the families 100% with this," said Markosky.

Sen. Neil Breslin, who sponsored the bill, says alternative therapies weren't included in the bill because their success hasn't been medically proven.

"We just could not afford to have every experimental treatment included as part of the bill because I should say that every time you drive the cost of someone's health insurance up by 1%, 30,000 people in the State of New York leave the insurance rolls," said Breslin.

Parents like Markosky say they'd like to see the legislation amended -- something Breslin says is possible since within the bill there's a provision which allows expansion of coverage if alternative techniques are proven medically sound.

Also see:

• Video
• A story from Connecticut.
• A facility in California.
• American Hippotherapy Association

Economic Class and Autism

The New York Times "Freakonomics" blog reports:

The higher rates of diagnosed autism among the wealthy has long been thought to be a result of higher rates of diagnosis (or “diagnostic ascertainment bias”) – i.e., wealthier families having better access to those who diagnose autism. However, a new paper argues that the disease itself might actually be more common at the higher end of the income spectrum. The paper relied on “abstracted data from records of multiple educational and medical sources to determine the number of children who appear to meet the ASD case definition, regardless of pre-existing diagnosis. Clinicians determine whether the ASD case definition is met by reviewing a compiled record of all relevant abstracted data.” Within all ethnic groups, wealthier parents were more likely to have autistic children, and the pattern held for undiagnosed autistic children as well. Neuroskeptic hypothesizes that paternal age may be partially responsible for the disparity. (HT: Marginal Revolution)

The paper is here.

See also an article in The American Journal of Sociology

Kentucky Bill

WYMT reports on implementation of legislation in Kentucky:

On the Hill: Lobbying for ASD Adults

Disability Scoop reports:

A group of autism advocates took to Capitol Hill Thursday morning pushing an ambitious new agenda to better serve adults on the spectrum.

In a series of policy recommendations, advocates from a consortium made up of a dozen organizations including Autism Speaks and Easter Seals highlighted the needs of adults with autism when it comes to learning life skills, accessing qualified support providers and obtaining funding that’s flexible.

Organizers of the advocacy effort known as Advancing Futures for Adults with Autism estimate that more than 500,000 individuals with the disorder will enter adulthood in the next 10 years. They are urging Congress to pass reforms within the next year to meet the needs they’ve identified.

Autism and the Police, Continued

The Spokesman Review reports a bizarre case in Idaho:

The parents of an 8-year-old autistic girl who was arrested at her northern Idaho elementary school are suing the school district and the sheriff’s department in federal court, contending the agencies violated the Americans With Disabilities Act.

Spring Towry and Charles Towry, along with their daughter, Evelyn, filed the lawsuit Friday in Idaho’s U.S. District Court against the Lake Pend Oreille School District and the Bonner County Sheriff’s Department.

...

The case arose Jan. 9, 2009, when the Kootenai Elementary School third-grader was arrested, handcuffed and taken to the county’s juvenile lockup on suspicion of battery. School staffers said Evelyn had spit on and inappropriately touched two instructors. The child was later released to her parents, and the prosecutor’s office dropped the charge against her.

After the incident, Charles Towry said his daughter has Asperger’s Syndrome, a high-functioning form of autism. He said that on the day of the altercation, she was wearing a hooded sweatshirt her mother had decorated with sewn-on ears to look like an animated cow character from the movie “Barnyard.” She wasn’t allowed into a school party because of the sweatshirt, although the lawsuit didn’t explain why.

Evelyn was placed in a separate classroom instead, Towry said, and when she tried to leave, staffers restrained her. Towry said that caused the girl to panic and react violently.

According to the lawsuit, Evelyn’s teacher, Louise Zumuda, and her principal, Betsy Walker, called police and asked to have her arrested and charged “because they felt they were not getting their point across” to the child and her parents after creating a plan to address behavioral issues. The Towrys say two deputies arrested, handcuffed and patted down Evelyn, refusing Spring Towry’s request that they release the child to her.

WTTG in Washington reports on the Neli Latson case:

Autism and Food Stamps

WRTV in Indianapolis reports:

The family of an Indianapolis man with autism is suing the state's social services agency, saying it illegally cuts grocery benefits it pays to developmentally disabled people enrolled in a Medicaid program based on how much they receive in food stamps.

The American Civil Liberties Union of Indiana filed the lawsuit against the Family and Social Services Administration on behalf of 26-year-old Michael Dick last week in Marion County Superior Court, 6News' Derrik Thomas reported.

Dick has been severely autistic since birth, is nonverbal and functions on the level of a 6- or 7-year-old, his family said.He's enrolled in Indiana's Developmental Disabilities Waiver Program and receives food stamps from the federal government.

But his family claims that when the federal program increased its benefits by $1.25 a day in 2009, the state deducted that same amount from his living allowance.

Talk About Curing Autism looks at food stamps from a different angle, calculating how to afford a gluten-free, casein-free diet on a very limited budget.

"Nick's Law" Family Leaving OK

An editorial in The Tulsa World:

The family that led efforts to force Oklahoma insurance companies to cover autism is leaving the state.

The emotional and financial toll of raising an autistic son without insurance coverage forced Wayne and Robyne Rohde to take their children to Minnesota, where they will be able to get insurance that covers treatment for their 12-year-old son Nick.

For years, the Rohdes have led families lobbying the Legislature for autism coverage mandates. They scored a partial victory this year when the Legislature agreed to a bill that requires insurance companies to cover the same illnesses for autistic children as they do for children without the condition. Previously, families reported that their autistic children were unable to get insurance coverage for things like asthma in their autistic children.

But the parity bill fell far short of the need for the families. Wayne Rohde said the family's cost of analysts, tutors, therapists and medications for their son is nearly $40,000 a year.

Here's a key point about the Rohdes and other families like them: They didn't want a free ride. They wanted to pay their own way in the same fashion that millions of other American families deal with health costs — through insurance.

But the insurance companies simply refused to cover them.

Earlier posts here and here.

Employment and ASD

The Columbus Dispatch reports that young adults with ASD may fall through the cracks of government services. Programs specifically for ASD often focus on children. Programs for employment of adults often focus on other kinds of disability:

Families report frustration as they turn to agencies such as the Rehabilitation Services Commission of Ohio; its history is rooted in finding jobs for people with traditional disabilities: hearing loss, mobility problems and blindness, for example.

County boards of developmental disabilities serve some adults with autism, but those with mild forms such as Asperger's might not qualify for services and the waivers that pay for them. Yet their "social dyslexia," as some describe the condition, can be crippling in the work world.

Ellen Ridenour, Chelsea's mother, said the family sought help from the commission's Bureau of Vocational Services in 2008 but found that their caseworker knew little about Asperger's syndrome. Although Chelsea had recently graduated from college with a 3.9 grade-point average, her family was told that she was "not competitively employable."

Others have reported similar experiences.

"I don't think they have any idea yet of the challenges of Asperger's," said Nancy Beu, a North Side woman whose 28-year-old daughter, Elizabeth, went through many difficult evaluations and interviews before getting a job at a YMCA.

"They don't do well with job interviews. That's overwhelming for them. Some of the case managers think, 'They're not employable.' Well, most of these young people have wonderful skills. Elizabeth always proves herself."

The commission's administrator, Michael Rench, met with some families and told them the agency is working to improve training and find better ways to help clients with autism.

"We recognize the frustration," he said.

But, at the same time, the commission remains obligated to serve the most-significantly disabled first. "If they have a master's degree and drive a car, it can be hard to determine how they qualify for our services," Rench said.

The commission served 860 Ohioans with autism last year. Officials say 122 cases were "successfully closed," meaning that the workers maintained competitive employment for at least 90 days.

Filler said that's often not long enough for a young adult with autism to adjust. She worries that traditional time frames and limited budgets allow cases to be closed before the workers attain stability.

National employment studies have found that, among recent high-school graduates with disabilities, those with autism have the highest job-retention rates after more than a year, Filler said. But two to six months into the job, they fare the worst.

Also see a Missouri report.

Neli Latson Case in The Washington Post

Here and here, this blog has posted items on Neli Latson, an ASD youth under arrest, as well as the efforts of his mother, Lisa Alexander, to draw attention to his case. Today it is in The Washington Post:

"What she has done has absolutely blown my mind," said Mark Bell, a civil rights consultant in Atlanta who has seen other parents stand up for their kids, but "I have not seen one person with the tenacity that she has."

By tenacity, he means Alexander's campaign for attention to her son's case. The effort has spread to Facebook, Twitter and an online petition that has collected more than 1,500 signatures. Some supporters are parents of autistic children like Latson, who was diagnosed with Asperger's syndrome in eighth grade, and others are African Americans drawn to the story of a black teenager who was arrested after an encounter with a police officer in a majority-white county.

...

On Alexander's Web site -- http://avoiceforneli.com -- strangers have left comments arguing, for example, that Latson is "a victim of SWB, sitting while black."

Meanwhile, Gina Vokoun, who lives in Arizona, has posted Latson's story on national e-mail groups for parents of autistic children. She became an advocate for autistic young adults after her son, 18 and diagnosed with Asperger's, was arrested after a friend placed a fake bomb in his backpack. Police tend not to recognize symptoms of autism, she said, and confrontations leading to jail can reverse progress young people have made.

It is likely that the mention by a major news organization will greatly increase traffic to Alexander's site.

Exceptional Family Member Program

The Air Force Times reports on the Exceptional Family Member Program:

EFMP, though, has major shortcomings, according to an Air Force inspector general report. The investigation, prompted by a complaint on behalf of 16 families, found installations do not have a full-time designated special-needs coordinator, installations are not providing access to special education services at new duty stations and the Air Force lags behind the other services in its support of families with special-needs children.

“The current level of support to these families is not consistent with the Air Force’s No. 2 priority: Develop Airmen and Take Care of Their Families,” concluded the investigating officer, a major whose name was redacted in public copies.

In response to the report, the Air Force said it intends to add full-time coordinators at 35 bases stateside who will help link families with information on medical, educational and social services, according to a service official who helps oversee the program. The plan, set to be put in motion in fiscal 2012, still needs the approval of Air Force Secretary Michael Donley.

“We hear the people, and we’re going in a direction their needs dictate,” said Linda Stephens-Jones, assistant deputy for family programs.

Lawmakers, too, are paying more attention to special-needs families. The House version of the fiscal 2011 defense bill calls for the Government Accountability Office to monitor the military’s handling of special-needs families.

The oversight came in the form of an amendment introduced by Rep. Cathy McMorris Rodgers, R-Wash., who is married to a retired Navy officer and has a son with Down syndrome.

“When a person joins the military, it’s not just the individual who joins,” said Rodgers, who is co-chair of the Congressional Military Family Caucus. “It’s also their family.”

• Rep. Rodgers's release.
• EFMP Facebook group.
• "A Pilot Navigates Autism"

Law Enforcement and Autism, Continued

Claudia Kalb writes in Newsweek:

Law enforcement and autism are a volatile mix, and not an uncommon one. “It happens quite regularly, unfortunately,” says Lee Grossman, president of the Autism Society, a grassroots organization based in Bethesda, Md. Decades ago, people with autism and other developmental disorders tended to land in institutions, where they had little interaction with anybody other than family members and staff. Today, autistic children and adults live with their families, go to local schools and, in some cases, get jobs in their communities. The unfortunate downside to this independence, says Grossman, is that “many more individuals on the spectrum are having run-ins with the police department and others, and it’s generally not a very positive experience.”

Autism is a diverse condition, but it is characterized by behaviors—repetitive movements, poor eye contact, sensitivity to lights and noise—that can be misinterpreted as unusual and even disrespectful. Even innocent behaviors can be come off as malicious. Grossman tells the story of an autistic man who loved to ride the bus. One day, he started staring at a female passenger. “She told him to stop, he wouldn’t, and it got uglier and uglier,” says Grossman. Ultimately, the police were called. The man’s crime turned out to be an autistic trait: fixation on a single object. In this case, the man was fascinated by the woman’s dangling earring.

(I would nitpick one line in the story: "One of autism’s defining features is the inability to process even the most mundane social interactions." That is an overstatement. It is more accurate to say that autistic people have an impaired or limited ability to process social interactions, and the extent of this impairment can vary a good deal.)

Police training is one remedy for the problem. Here is an example from New Hampshire:

The Wilton Police Department launched a program during the first week in June called Autism Awareness 9-1-1, in which families of autistic children can let local emergency personnel know about the child’s condition.

The program, coordinated in the Nashua area by Gateways Community Services, is designed to help avoid any potential undue conflict from social misunderstandings between the child and the officer, particularly in instances with lost children where misunderstandings could create conflict.

Wilton Police Chief Brent Hautanen thinks the program will be useful.

“From a law enforcement perspective, the more information we have, the better our response is going to be,” Hautanen said. “If we have a child that’s missing that’s autistic, the faster we can get that information, the better we’ll be able to handle that call.”

Another example from Arkansas:

Police in the area say they regularly interact with people with disabilities, including autism.

But many officers said not having a proper understanding of the disability sometimes makes it difficult for them to do their jobs.

That's why law enforcement officials from all over the state met Monday in Springdale for a special seminar on what autism is and how to work with individuals with autism.

When police officers arrive at a scene, they need to be able to assess the situation, and that includes anyone who might be there when they arrive. A big part of that is recognizing those who might be autistic.

Lt. Will Dawson from the Greenwood Police Department said, “I didn't know that it affects one out of every 110 people."

From the Huffington Post, here is an update on the Neli Latson story:

The disturbing case of Reginald Cornelius Latson, the autistic young man arrested in Virginia last month, has taken an even more disturbing turn. His mother, Lisa Alexander, told an internet-based radio audience Sunday night that Stafford County deputies used racist slurs against her son when they stopped and arrested him May 24.

Autism and TRICARE

A press release from Mantese Honigman Rossman and Williamson:

Military families having children with autism have filed a class action lawsuit against the Department of Defense, alleging that the DoD and its health benefits division, TRICARE, have wrongfully refused to provide insurance coverage for applied beha...vior analysis (ABA) therapy. In a dramatic new development, the Department of Defense has vacated its prior policy of denying payment for ABA therapy for autistic children of military families, but it is still refusing to pay for such claims. Specifically, the DoD's attorneys have issued a policy letter stating, "The TRICARE Management Activity has vacated any previous instruction it may have issued to its contractors that ABA is not covered under the Basic Program." Military families having an autistic child should file claims for ABA therapy without delay.

...

The lawsuit contends that the military health benefits division, TRICARE, at the direction of the DoD, incorrectly characterizes ABA therapy as "special education" and thereby improperly excludes ABA therapy from the health care available to members of the military. The families refute this position and demonstrate in their Complaint that many prestigious individuals and organizations, including the United States Army, the Army and Marine Corps Autism Task Force, the Executive Director of the National Autism Center, the Acting Surgeon General of the United States Army, and United States Air Force Major Ella B. Kundu, Diplomate of the American Board of Psychiatry and Neurology, agree that ABA therapy is not "special education."

The case is Berge v. United States of America, et al, No. 10-cv-00373-RBW (DC), and it was assigned to Judge Reggie B. Walton of the federal district court in Washington, D.C.

Autism Speaks has a special page for military families.

See also an Autism Speaks blog post by a Marine wife and autism mom.

Ad Council and Autism

The Ad Council has been working with Autism Speaks since 2006.

A press release from the Council:

The Advertising Council, in partnership with Autism Speaks, North America’s largest autism science and advocacy organization, announced today the launch of a new series of public service advertisements (PSAs) designed to raise awareness about autism and to empower parents to take action if their child is not meeting certain developmental milestones.

Other PSAs are available here.

Autism and Latinos

The Santa Cruz Sentinel reports:

In Santa Cruz County, the regional center serves 35 Latino children with autism, a number that [Gina] Fiallos [of San Andreas RC] said is not inclusive, because some children with autism diagnoses don't meet the state criteria for services at the regional center. The center serves 143 Santa Cruz County children in all.

Studies suggest the illness may be under-diagnosed or misdiagnosed in Latino families. In California, the percent of all autistic people that are Latinos, 28 percent, is below the total percentage of Latinos in the state, 36 percent. Yet, the population of Latino children is growing in Santa Cruz County, meaning the autism diagnosis might rise, as will the need for services in Spanish and providers who speak Spanish.

Parent-run support groups are common in English-speaking communities. Santa Cruz has the Special Parents Information Network and the Special Needs Parent Training Alliance that offer community, resources and support to families dealing with disabilities in general.

And while such groups specifically for autism exist for Spanish-speaking families elsewhere in California, no such group seems to exist in Santa Cruz County, leaving families like the Morans feeling they must deal by themselves with an illness that has no cure, no single scientifically vetted cause and a lifetime of treatment.

...

There is some evidence that California children of Mexican-born parents have a lower prevalence of autism. Yet, what isn't clear in those studies is whether Spanish-speaking or immigrant parents have the same access to and education of possible resources available. Also, there is evidence that minority children are misdiagnosed with attention-deficit hyperactivity disorder or obsessive-compulsive disorder before the correct diagnosis of autism is made.

This wastes what many professionals see as precious time to intervene and start treatment.

"There isn't a clear answer. So little is known about autism in Latinos," said Virginia Chaidez, a post-doctoral researcher at the UC Davis MIND institute. Chaidez, under the guidance of autism expert Irva Hertz-Piccioto, has begun a project looking at diagnosis rates of Latino children, and what environmental and genetic factors may contribute, including proximity to agricultural chemicals.

Meanwhile, some Latino families deal with the stigma associated with having a child with developmental needs.

Generation Gap in Perceptions of Autism

At the Bloomington Alternative, Steven Higgs suggests that there might be a generation gap in perceptions of autism. He writes of Travis Roach, a young man with Asperger's, his mother Lisa, his sister Chelsea, and her friend Megan:

In terms of negative reactions to Travis, Lisa casts the tale in generational terms. "There's a couple adults at McDonalds that's had problems with his talking," she says. But Chelsea and Megan's generation -- both are college seniors -- has grown up with the nationwide epidemics of autism and developmental disabilities, such as attention deficit-hyperactivity disorder and learning disabilities. More than one in four children in the Metropolitan School District of Mount Vernon -- 26.1 percent -- received special education services during the 2008-09 school year, according to Indiana Department of Education data.

"They don't think anything about them," Lisa says. "It's adults who have problems."

And that reminded me of another salient moment I experienced with the father of an elementary-aged boy with Asperger's. Only somewhat tongue-in-cheek, he suggested a day's worth of awareness-raising events where kids with autism mix with the public. His suggested title for the event:

"Get Over It, It's Autism"

Special Ed in DC

Here is a follow-up to a May 30 post about a special-ed controversy in Washington, DC. The Washington Post reports:

The administration of D.C. Mayor Adrian M. Fenty, seeking to whittle the annual $280 million cost of sending special education students to private schools, said Thursday that it will study several options to return as many as possible to the city's public schools.

The options, which officials said they will present to parents in meetings over the next few weeks, include forming public-private partnerships to build new facilities, co-locating "schools within schools" in joint ventures with private operators, expanding special education services in neighborhood schools by establishing separate classes for students who need full-time services, modernizing the city's special education schools and retraining staff, and offering scholarship-type grants so parents can buy special education services on the open market.

Fenty announced the initiative 90 minutes after his rival in the Democratic mayoral primary, D.C. Council Chairman Vincent C. Gray, unveiled his schools platform. Fenty's plan was designed in part to address recent criticism from special education parents who have expressed alarm at District attempts to "reintegrate" private school students without what they describe as adequate advance notice or careful consideration of their needs.

Incidence and Prevalence

In a three-part blog entry at Psychology Today, Dr. James Coplan argues that there is no evidence for an autism epidemic. His focus is on the distinction between prevalence and incidence.

• Part 1
• Part 2
• Part 3

BPA Ban in California

The Los Angeles Times reports:

The state Assembly passed a bill Thursday to ban the chemical Bisphenol-A from baby bottles and other items that come in contact with small children.

The Toxin-Free Toddlers and Babies Act, or SB 797, would ban the use of BPA in feeding products, including formula, for children 3 years old and younger.

BPA has been linked with health problems such as infertility, autism, asthma, hyperactivity and breast cancer. In January, the U.S. Food and Drug Administration reversed its long-held position that BPA posed no concern, calling for more studies of the artificial hormone that often is used in shatter-proof plastic baby bottles, sippy cups and linings of cans, including those containing baby formula.

Tennessee Mandate Bill Falls Short

WVLT reports on a Tennessee mandate bill that did not pass: