Reaction to the Lifting of the Texas Age Cap

The Dallas Morning News reports:

Autism advocates are expressing joy and relief over a new state law that expands insurance coverage for children with autism, saying it will greatly reduce parents’ financial burden and ensure continued treatment.

The bill, which takes effect this week, eliminates age caps for state-regulated health plans, guaranteeing coverage of autism treatment past age 9.
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“It is a very important bill, and one that I am extremely proud of,” said Democratic Sen. Kirk Watson of Austin, one of the bill’s sponsors. “It’s pretty simple from the standpoint of what it will mean to families.”

The measure drew some criticism in the legislative session as having the potential to drive up insurance premiums. Watson said sponsors compromised on some elements, such as limits on applied behavioral analysis coverage, to ensure it would pass.

While the age caps have been eliminated, to qualify for this extended coverage, children must be diagnosed with autism by the age 10. The average age of diagnosis for a child, according to Autism Speaks, is 5. The age of diagnosis is higher in minority communities.

At Bishop T.D. Jakes’ MegaFest gathering in Dallas this weekend, Autism Speaks presented its Early Access to Care Initiative, which aims for faster diagnoses and increased availability for specialized care.

“This is going to open the door for children who don’t get diagnosed until they are 6 or 7,” said [Judith] Ursitti. “Even when they become adolescents, this will allow their family to access care under their health care provider.”

Placentas, Early Diagnosis, and Abortion

On the Ivanhoe Newswire, Dr. Harvey Kliman talks about his research on abnormal folds in the placenta as a way to identify children who are at risk for autism.

How significant is this in helping with the early detection of autism?

Dr. Kliman: Before this test, the PlacentASD test, as we call it, there is no method at birth to know this at all. There is zero method, so parents would normally, if they do not have a child with autism already, not notice this until the child is two or three years of age. The CDC, the Centers for Disease Control, who looks at the frequency of autism and the ppolrevalence; how many families have it, they recently came out in March of this year with an estimate of 2%; 1 out of 50 children now born in this country are diagnosed with autism. They have actually shown that sometimes families do not know until their child goes to school in kindergarten.
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So, just help me here, how significant is that because there is no cure for autism. People, who are diagnosed, if that is the correct term with autism, live with that for their life and there are obviously therapies, etc. to try and help them. So, what is the significance of this?

Dr. Kliman: That is a great question and while it is true that the genetic basis for what causes autism is in these people, if we have early intervention, we can help these children become socialized, so they can fit in to the point where we cannot even tell that they have any condition. Let me also point something out, people have said to me, ‘can this test be used for prenatal diagnosis, diagnosis before delivery, because maybe a family would want to terminate a pregnancy.’ And I am completely against that. [emphasis added] The reason is, is that these children are exceptional. Many of them are very smart. There are many professors with autism at MIT right now. When we look at Google and Facebook and Microsoft, and maybe even Apple computer, we are talking about people who are brilliant; who are very creative, but they are not quite adapted to social interactions. They are not as empathetic as a normal person might be for example. If we can train children early to respond to someone being upset, or someone being hurt, we can take someone who is exceptional, and actually very smart, with spatial recognition and mathematics, and things like that, and have them be happier. That is why I think it is so important to make this diagnosis early to give these children, and then adults, the best chance possible to be productive members of our society.

Dr. Kliman's objections notwithstanding, it is highly plausible that a prenatal test would indeed lead to abortions.  In the majority of cases where amniocentesis indicates Down Syndrome, the pregnancy ends in abortion.

Money to Keep an ASD Student Out of School

In Sacramento, KXTV reports:

The mother of a child with severe autism and diabetes said two school districts are violating her son's right to an education.

Heather Houston has been involved in ongoing negotiations with Yuba City Unified School District (YCUSD) and the Sutter County superintendent of schools (SCSOS)since last year.

According to Houston, they've discriminated against her son, David Swanson, and refused to follow his individualized education program (IEP). They've even barred him from campus with his private duty nurse, despite doctor's orders.

On the first day of school in mid-August, the nurse refused to sign a medical release form which would allow the district's school nurse to communicate with Swanson's doctor and care for him. Houston said the school denied him and the nurse entry because of the nurse's refusal, even though the waiver reads the refusal will not affect the student's education.

PREVIOUS STORY: Mom: School endangers, discriminates against son with autism, diabetes

Houston said school officials are going to extreme lengths, even offering tens of thousands of dollars to keep Swanson out of school.

"They don't have a right to do it to anyone," Houston said. "And they don't have a right to do it to David."

Houston said she just wanted YCUSD and SCSOS to comply with the law. According to Houston, it's never been about money and their unsolicited payment offers show how far they are willing to go keep him out of school.

The first settlement offer came in June. Houston was offered $50,000 to take Swanson out of their school district.

Houston rejected it.

Then another offer was made Aug. 27. It was for $86,000.

Federal Guidance on Special Ed for Military and Other Highly Mobile Students

An earlier post discussed challenges facing military families, who must move often. Autism Speaks reports:

In response to longstanding concerns raised by military families subject to frequent relocation, local school districts have been directed to provide special education and related services for transferring military students that are "comparable" with what they received at their previous school. An estimated 23,500 children in military families have autism.

The directive was issued as guidance by the U.S. Department of Education's Office of Special Education and Rehabilitative Services (OSEP) for local school districts around the nation to understand their obligations under the federal IDEA Act and their responsibilities to satisfy the IEPs of "highly mobile students," such as those in military families, migrant families or foster care, or the homeless.

Military and other highly mobile students frequently face challenges with school districts and often have very little recourse due to ongoing relocation. Due process proceedings are time intensive and the family may be required to move again before any conflict can be resolved.

Click here for the OSEP letter to state special education directors,

Click here for an analysis of the letter.

Disabilities and the Commemoration of the March on Washington

A release from the American Association of People with Disabilities:

The Chair of the American Association of People with Disabilities (AAPD), Fred Maahs, will speak at the Closing Commemoration of the 50th Anniversary March on Washington on Wednesday, August 28, 2013. Maahs is scheduled to speak prior to President Barack Obama who takes the podium at 3PM EST, which is the exact time that Reverend Dr. Martin Luther King Jr. delivered his I Have a Dream speech.

“For many millions of people with disabilities, the American dream remains out of reach,” said Fred Maahs, Chair of AAPD. “We have seen a lot of progress, but, like all civil rights movements, the disability rights movement has much more to do.”

Maahs is referring to staggering challenges in employment, healthcare, technology and education. According to the Bureau of Labor Statistics, the unemployment rate for Americans with disabilities is nearly double the rate compared to Americans without disabilities (14.7% v. 7.4% as of July, 2013). Further, 8 out of 10 Americans with disabilities are out of the workforce. Today in the United States, hundreds of thousands of people with disabilities earn far less than minimum wage in segregated work. Finally, 85 percent of young people with disabilities report incidents of bullying.

In addition, Maahs will call on Americans to support the ratification of the Convention on the Rights of Persons with Disabilities (CRPD) or Disability Treaty. The Disability Treaty is in the spirit of the Americans with Disabilities Act (ADA), historic bipartisan legislation passed in 1990 that advanced and recognized the rights of Americans with disabilities. The Disability Treaty would level the playing field for U.S. businesses working abroad and increase access for U.S. citizens with disabilities when traveling overseas.

“Our disability rights movement is a civil rights movement grounded in the very American principles of freedom and self-determination,” said Mark Perriello, the President and CEO of AAPD. “Like more and more Americans, Maahs knows that disability rights are civil rights and everyone at AAPD is proud that he is participating in the Closing Commemoration.”

Maahs is the current Director, National Community Partnerships at Comcast, and Vice President of the Comcast Foundation. AAPD and Comcast partnered to broadcast the first-ever national anti-bullying public service announcement for people with disabilities.
For more information, please go to www.AAPD.com/march. 

Workplace Metrics

A release from the US Department of Labor:

The U.S. Department of Labor today announced two final rules to improve hiring and employment of veterans and for people with disabilities. One rule updates requirements under the Vietnam Era Veterans’ Readjustment Assistance Act of 1974; the other updates those under Section 503 of the Rehabilitation Act of 1973. For more than 40 years these laws have required federal contractors and subcontractors to affirmatively recruit, hire, train and promote qualified veterans and people with disabilities respectively.
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"Strengthening these regulations is an important step toward reducing barriers to real opportunities for veterans and individuals with disabilities," said Patricia A. Shiu, director of the department’s Office of Federal Contract Compliance Programs, which enforces both laws.
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The Section 503 rule introduces a hiring goal for federal contractors and subcontractors that 7 percent of each job group in their workforce be qualified individuals with disabilities. The rule also details specific actions contractors must take in the areas of recruitment, training, record keeping and policy dissemination — similar to those that have long been required to promote workplace equality for women and minorities. [emphasis added]

The rules will become effective 180 days after their publication in the Federal Register. More information is available atwww.dol.gov/ofccp/VEVRAARule/ and www.dol.gov/ofccp/503Rule/.

OFCCP enforces Executive Order 11246, Section 503 of the Rehabilitation Act of 1973 and the Vietnam Era Veterans' Readjustment Assistance Act of 1974. These three laws require those who do business with the federal government, both contractors and subcontractors, to follow the fair and reasonable standard that they not discriminate in employment on the basis of sex, race, color, religion, national origin, disability or status as a protected veteran. For general information, call OFCCP's toll-free helpline at 800-397-6251 or visit http://www.dol.gov/ofccp/.

Housing Discrimination

Autism Speaks reports that a federal appeals court has upheld a HUD case against a West Virginia landlord.

The case involved a Charleston, WV landlord who imposed a series of conditions on a prospective tenant, Delores Walker, after she said her 48-year-old brother with "severe autism" would share the apartment. The landlord demanded that Walker obtain a note from her brother's doctor stating that he would not pose a liability threat, obtain a renter’s insurance policy with $1 million in liability coverage, and assume responsibility for any damage Walker's brother might cause to the property.

The landlord, Michael Corey, told Walker he was imposing the conditions based on his prior observations of “children with autism . . . flailing their arms and hollering and screaming in outrage.”

Walker elected not to pursue the rental, but HUD took up the case, arguing Corey had violated the Fair Housing Act by discriminating on the basis of disability in his offer of the apartment. An administrative law judge found for Corey, but HUD reversed the judge's recommendations and imposed fines on Corey.

Corey then appealed to the U.S. Fourth Circuit Court of Appeals. The three-judge federal appeals panel upheld HUD's actions and further increased the fines.

From the opinion: 

Section 3604(c) of the FHA [Fair Housing Act] prohibits oral or written statements with respect to the rental of a dwelling that indicate a “preference, limitation, or discrimination” based on certain protected statuses, including disability....

Corey does not deny telling Ms. Walker that he intended to impose special conditions on the Walkers’ prospective tenancy, but disagrees that he violated § 3604(c). He argues that he imposed the conditions only after Ms. Walker’s “voluntary and unsolicited statement that her brother suffers from ‘severe autism and mental retardation.’” Pet’r’s Br. 20. Corey also notes that he never indicated a flat refusal to rent to the Walkers, “only that . . . risk insurance maybe [sic] required.” Id. at 21.

Corey’s arguments are unavailing. For one, the fact that Ms. Walker disclosed her brother’s disability does not excuse Corey’s discriminatory responsive statements. Nor does it matter that Corey did not refuse to rent to the Walkers; the statute simply prohibits statements to renters that indicate a limitation based on disability, and Corey admits to making such statements. This ends the inquiry, as substantial evidence supports the Secretary’s determination.

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 Finally, we affirm the Secretary’s conclusion that the § 3604(f)(9) “direct threat” exception does not apply. Corey makes no showing that his discriminatory conduct was supported by any objective evidence that Mr. Walker posed a direct threat to persons or property, as is required to trigger the exception. See H.R. Rep. No. 711, at 30 (1988), reprinted in 1988 U.S.C.C.A.N. 2173, 2191. And even if Corey’s request for a meeting with Mr. Walker and a doctor’s note was, as he maintains, an attempt to obtain such objective evidence, Corey cannot justify the other discriminatory conditions he sought to impose, based as they were on unsubstantiated stereotypes about autistic people in general.

A Service Dog, An Allergy, and the Media

In Ohio, The Columbus Dispatch reports on Shyanna Gretz, a 6-year-old autistic girl who cannot attend Morrison-Gordon Elementary School with her service dog. The special-ed teacher who was to teach Shyanna is severely allergic to dog dander.

Instead, Gretz was told, her daughter and the dog must transfer to East Elementary School, where an allergy-free special-education teacher will instruct Shyanna using the customized learning plan developed for the girl.

That’s unacceptable to [mother Charla] Gretz, who asked why a different teacher could not be assigned rather than make her daughter change schools. Morrison-Gordon is a 15- to 20-minute bus ride for her daughter, and riding to East would double the time, she said.

“She does not do well with buses,” Gretz said.

Shyanna’s autism includes being overwhelmed by sensory issues and not coping well with change, and a longer bus ride and switching schools would exacerbate both, she said.

Superintendent Carl D. Martin said Spring is welcome in the district of about 2,800 students, where about 20 percent have an identified disability, he said.

However, the accommodations made for Shyanna and her dog must be balanced against the rights of the allergic teacher, and moving the student to a different school is a reasonable solution, Martin said.

He also disputed the time that Gretz gave for the bus ride. The elementary schools are 5 miles apart, and Shyanna would not spend significantly more time on the bus, he said.

Spring is trained to calm Shyanna and to walk on a tether attached to Shyanna so the girl cannot wander.

In Ohio, The Athens News reports:

After the Columbus Dispatch ran a story about the dispute Friday, Martin said, he was deluged with media calls. "I've talked to the Dispatch, WOUB (radio), Channel 4 news (from Columbus), the Athens Messenger," he ticked off. "I've talked to MSN.com." He added that one person he hasn't yet had a discussion with is Charla Gretz.

TV Story on Wandering

Many posts have discussed wandering by ASD children and adults.  WKBN in Youngstown reports on  children and elopement:

An Impending Crisis

WebMD reports on autistic adults:

"This is an impending health care or community care crisis," said Dr. Joseph Cubells, director of medical and adult services at the Emory Autism Center at Emory University in Atlanta. "The services that are available vary from state to state, but often the resources just aren't there."
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"We say autism as if it's a single thing, much like we say cancer," Cubells said. "But, within the general category of things we call cancer are brain tumors, lung tumors, pancreatic tumors, and each requires different treatments. Autism is very individual. It varies from one extreme where someone needs custodial care for their entire life to the other extreme where someone is a highly functional, successful person who may be regarded as being a little quirky," he explained.

"There are some common themes," Cubells said, "but there's really nothing that applies to every single person."

Take higher education, for instance. An older child who's on the higher-functioning end of the spectrum may be able to go to college, but that presents challenges as well.

"There's often a substantial mismatch between verbal skills and performance skills," Cubells said. "You can be highly intelligent and able to do complex math and abstract reasoning, but you don't know how to ask someone out for coffee. Having to make friends, schedule meals, and get to class without help can be like hitting a brick wall for a lot of people on the spectrum.

I often tell people with Asperger's that they have to learn in words what most people learn intuitively."

He said a college's disability services office could be helpful in some cases, as could peer mentorship programs that pair someone with Asperger syndrome, for instance, with someone of the same age who's learned about the condition.

FDA on Hyperbaric Oxygen Treatment

Some people have tried to use hyperbaric oxygen chambers to treat autism, even though evidence is lacking. An open letter from the Food and Drug Administration:

Over the last year, the FDA has become increasingly aware of hyperbaric oxygen treatment centers promoting hyperbaric oxygen chambers for uses that have not been cleared or approved by the FDA. Even though the FDA does not regulate the practice of medicine, we are concerned that patients may be choosing hyperbaric oxygen therapy (HBOT) over proven medical treatments without realizing that the FDA has only cleared HBOT devices for 13 specific indications, as outlined at the end of this e-mail. The FDA does not have any data supporting the safe and effective use of HBOT for treatment of any indications not included in this list.

The FDA urges patients to discuss this therapy directly with their health care providers to determine if it is an appropriate treatment option. To provide more information, the FDA has published an FDA Consumer Update: Hyperbaric Oxygen Therapy: Don’t Be Misled. We encourage you to share this article with your members. Additionally, if any of your members suspect they have been injured through use of hyperbaric oxygen chambers, we encourage them to submit a report through MedWatch, FDA’s Safety Information and Adverse Event Reporting program.

If you have any questions about this communication, please contact FDA’s Division of Small Manufacturers, International and Consumer Assistance (DSMICA) at DSMICA@FDA.HHS.GOV, or 800-638-2041, or 301-796-7100.

Thank you for your continued support.

Autism is not on the list of 13 indications.

More Risk Factors

Most scientific studies are careful to distinguish correlation and causation, but a casual reader of the news might scan recent stories and conclude that "everything causes autism."

From Time:

More research finds a family-based risk of autism among siblings, which raises the question of what parents can do to lower the risk among potentially at-risk youngsters.

Researchers from Aarhus University in Denmark report in the journal JAMA Pediatrics that children with an older brother or sister diagnosed with an autism spectrum disorder (ASD) are more likely to be on the spectrum themselves.

According to their study of about 1.5 million children born in Denmark between 1980 and 2004, those who had an older sibling diagnosed with autism had close to a seven-fold increased risk of developing autism as well. Siblings who shared the same mother and father had a 7.5 greater risk of having autism, whereas maternal half siblings had a 2.4 greater risk. Paternal half siblings didn’t have a statistically significant increase in risk.

From Healthline:

Expectant mothers should be tested for thyroid issues to reduce their child’s risk of developing autism and other complications, experts say.

New research published in the Annals of Neurology shows that mothers with low levels of the thyroid hormone T4, or throxine, are four times more likely to give birth to a child with autism. The more throxine deficient a mother is, the more pronounced her child’s symptoms can be, researchers said.

Scientists from the Houston Methodist Neurological Institute and Erasmus Medical Centre came to this conclusion after studying 4,000 Dutch mothers and their children. This finding coincides with previous research that shows a mother’s throxine levels influence a child’s neurological development.

“It is increasingly apparent to us that autism is caused by environmental factors in most cases, not by genetics,” lead author Dr. Gustavo Román, a neurologist and neuroepidemiologist who directs the Nantz National Alzheimer Center, said in a press release. “That gives me hope that prevention is possible.”

HealthDayNews reports:

Inducing or helping along labor in pregnant women may raise the risk for having a child with autism, particularly if that child is a boy, a new study suggests.

Experts, including the Duke University researchers, are quick to caution that there are often overriding medical reasons to induce or augment labor that should not be ignored because of any potential risk of autism.

Inducing labor involves stimulating contractions before labor has started through various means, and augmenting labor refers to the practice of helping labor progress more quickly with oxytocin (Pitocin), a drug that stimulates contractions.

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The new study, published online Aug. 12 in JAMA Pediatrics, is the largest to date that looks at autism risk and factors affecting labor and delivery. The findings don't prove that labor induction or augmentation cause autism, they just show an association. Exactly how labor induction could affect autism risk is unknown, but the drug oxytocin may play a role.

CBS reports: 

Other conditions during pregnancy have recently been linked to increased autism risk. An August 2012 study showed that mothers who were obese were 67 percent more likely to have children with the disorder compared to those who maintained a normal weight during pregnancy.

Taking the anti-epilepsy drug valproate has been linked to a five-fold higher risk of having a child with an autism spectrum disorder in an April 2013 study published in JAMA. Exposure to air pollution while with child was also significantly connected to higher rates of autism, a June 2013 Environmental Health Perspectives study revealed.

Bullying, FAPE, and the Department of Education

Disability Scoop reports:

In new guidance sent to educators across the country, federal education officials say that schools may be liable if they don’t properly address bullying of students with disabilities.

The guidance issued Tuesday in a four-page “Dear Colleague” letter details the unique obligations that schools have under the Individuals with Disabilities Education Act to ensure that children with disabilities are not victimized.

Specifically, officials from the U.S. Department of Education’s Office of Special Education and Rehabilitative Services said that bullying can lead to a denial of a student’s right to a free and appropriate public education, or FAPE, if it “results in the student not receiving meaningful educational benefit.

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Several studies in recent years have suggested that children with disabilities more frequently encounter bullying. Findings released in 2012 from a nationwide poll indicated that 63 percent of kids with autism have been bullied. Another study published the same year found that about half of adolescents with autism, intellectual disability, speech impairments and learning disabilities were bullied at school..

Education Week reports:

The letter points to research on bullying and students with disabilities, including a 2012 paper in the Journal of School Psychology which found that students with observable disabilities and behavior disabilities reported being bullied more often than their typically-developing peers.

The department also cited a 2010 study in the Journal of Developmental Behavioral Pediatrics that surveyed 221 youth with varying disabilities and compared their experiences to 73 typically developing children. In addition to being at higher risk of bullying, that study noted that students with disabilities were also at risk of being ostracized from their peers.

To that point, the guidance letter also says that schools cannot unilaterally decide to try to fix a bullying problem by moving a student with disabilities to a more-restrictive "protective" environment, or by changing a student's special education services. That decision must be made by an IEP team and give an opportunity for parents to weigh in, the letter said.

Ari Ne'eman, the president of the Autistic Self Advocacy Network, supported that reminder. In a statement, he said that the department deserves credit "for reinforcing that when a child is being bullied, it is inappropriate to 'blame the victim' and remove them from the general education classroom. School districts have an obligation to address the source of the problem—the stigma and prejudice that drives bullying behavior."