Telehealth Legislation

"Telehealth" is a mode of delivering health care services while the provider is far from the patient.  According to HHS, telehealth technologies include videoconferencing, store-and-forward imaging, streaming media, and wireless communications.  The California Legislature has passed SB764, a bill to encourage the use of telehealth.  From a bill summary:

Under existing law, the Lanterman Developmental Disabilities Services Act, the State Department of Developmental Services is authorized to contract with regional centers to provide supports and services to individuals with developmental disabilities.

This bill would require each regional center individual program planning team to consider the use of telehealth, as defined, whenever applicable, for the purpose of improving access to intervention and therapeutic services for consumers and family members and for purposes of facilitating better and cost-effective services, as provided. The bill would require the department to implement appropriate vendorization subcodes for telehealth services and programs.

This bill would require the department, by December 1, 2017, to provide to the fiscal and appropriate policy committees of the Legislature specified information that is provided voluntarily by regional centers relating to the provision of telehealth services.

Autism advocate Laura Shumaker explains the need:

Since Matthew’s hospitalization last year, he gets very nervous when he’s not feeling well.

“I think I need to go back to the hospital,” he’ll say. If he were living at home, I could see him, size up the situation and reassure him. So the folks at Camphill, having determined that a trip to the hospital was not necessary, suggested that we Skype each other. At first I thought this was a silly idea. Who do they think I am, Jane Jetson? And who looks good on Skype, anyway? But Matthew’s ability to see me and mine to see him has proved not only to be reassuring, but saves time and money and unnecessary visits to the ER.

Alleged Abuse in Texas

KGNS-TV in Laredo, Texas, reports on alleged abuse in school:

 

Autism Speaks Slams TRICARE Response

Previous posts described a federal court ruling that TRICARE has to cover ABA.  Autism Speaks takes a dim view of TRICARE's response:

An interim TRICARE policy change affecting ABA benefits for military families fails to provide the level of coverage that was ordered by a federal judge in a class action lawsuit in July.

The Department of Defense (DoD) developed the interim policy change in response to a July 26 ruling by U.S. District Court Judge Reggie B. Walton that struck down the limited ABA benefits provided by TRICARE as "arbitrary and capricious." Walton ordered the DoD, which manages the TRICARE program, to begin offering coverage to military retirees, as well as active duty personnel. An estimated 23,000 military dependents are affected by autism.

An analysis by Autism Speaks of the DoD policy change found that its list of authorized ABA providers is severely restricted. "Very few dependents will actually receive any level of care, let alone the intensive level of services many require," the Autism Speaks analysis concludes.
For FAQs on the policy change and further background, go here.

Pulling Out of Public School

Previous posts have discussed alternatives to the public school system. The Houston Chronicle reports:

For thousands of Texas parents, the start of the school year has taken on a new meaning: an end to the conflicts, struggles and disappointment with the public school system.

A growing number of parents of special-needs children are opting out of public schools, deciding instead to home school or to pay for pricey private schools.

The number of secondary students who left public schools to home school increased 50 percent from 2003 to 2010, reaching 2,040 7th- through 12th-graders, according to the Texas Education Agency. The number of middle- and high-school special education students who withdrew for private school increased 75 percent, reaching 772 in 2010.

That's not to mention thousands of younger students whose reasons for leaving public schools aren't recorded, or the countless families who give up on public school before their child receives a needed "special education" classification. With Texas' diagnosis rate falling to an all-time low of 8.8 percent in recent years - the lowest in the nation - the label and its accompanying services are harder than ever to come by.

"It's the free market at work. People are voting with their feet," said Tim Lambert, president of the Texas Home School Coalition. "Parents just get frustrated with the bureaucracy of the public school."

Hispanics and Diagnosis Disparities

Previous posts have discussed diagnosis disparities among Hispanics and other demographic groups. A release from the MIND Institute:

Hispanic children often have undiagnosed developmental delays and large numbers of both Hispanic and non-Hispanic children who first were thought to have developmental delay actually had autism, researchers affiliated with the UC Davis MIND Institute have found.
The study, one of the largest to date to compare development in Hispanic and non-Hispanic children, is published in the journal Autism. The results lead the study authors to recommend increased public health efforts to improve awareness, especially among Hispanics, about the indicators of developmental delay and autism.
...
In conducting the study, the researchers used data from the Childhood Autism Risk from Genetics and the Environment (CHARGE) Study, a population-based study of factors that increase risk for autism or developmental delay. The current study included 1,061 children living in California who were between 24 and 60 months of age. They were divided into three groups: children with autism, children with developmental delay but not autism, and children with typical development. All diagnoses were confirmed or changed based on evaluations by MIND Institute clinicians.
...
When the outcomes for Hispanic children were compared to non-Hispanic children, the results revealed more similarities than differences in terms of autism profiles, including diagnostic scores, language function, whether or not children lost acquired skills and overall intellectual, social and physical functioning.

A striking outcome, however, was that 6.3 percent of Hispanic children enrolled in the study who were selected randomly out of the general population met criteria for developmental delay, compared with only 2.4 percent of non-Hispanic participants, which is the expected percentage. This raised concerns among the researchers that many Hispanic children with developmental delays may not be getting the services they need.

For both Hispanic and non-Hispanic children, there was a high percentage (about 19 percent overall) of Hispanic and non-Hispanic children recruited for the study with developmental delay who actually met criteria for autism, raising concerns about adequate access to accurate developmental assessment.
...
The study, titled "Autism spectrum disorders in Hispanics and non-Hispanics," is available at http://aut.sagepub.com/content/16/4/381. The research was funded by the National Institute of Environmental Health Sciences (grants R01-ES015359 and P01-ES11269), the U.S. Environmental Protection Agency's STAR program (grants R-829388 and R-833292) and the UC Davis MIND Institute.

Evidence of Limited Evidence

Previous posts have discussed the dearth of hard evidence regarding many aspects of the autism issue, particularly those involving younger and older adults. A release from Vanderbilt University confirms this problem:

Vanderbilt University researchers studying interventions for adolescents and young adults with autism are reporting today that there is insufficient evidence to support findings, good or bad, for the therapies currently used.

Although the prevalence of autism is on the rise, much remains to be discovered when it comes to interventions for this population, the researchers concluded.

“Overall, there is very little evidence in all areas of care for adolescents and young adults with autism, and it is urgent that more rigorous studies be developed and conducted,” said Melissa McPheeters, Ph.D., M.P.H., director of Vanderbilt’s Evidence-Based Practice Center and senior author of the report, a systematic review of therapies published by the Department of Health and Human Services’ Agency for Healthcare Research and Quality (AHRQ).

Zachary Warren, Ph.D., director of the Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders, said, “There are growing numbers of adolescents and adults with autism in need of substantial support. Without a stronger evidence base, it is very hard to know which interventions will yield the most meaningful outcomes for individuals with autism and their families.”

Key findings:

The researchers systematically screened more than 4,500 studies and reviewed the 32 studies published from January 1980 to December 2011 on therapies for people ages 13 to 30 with autism spectrum disorders. They focused on the outcomes, including harms and adverse effects, of interventions, including medical, behavioral, educational and vocational.

• Some evidence revealed that treatments could improve social skills and educational outcomes such as vocabulary or reading, but the studies were generally small and had limited follow-up.
• Limited evidence supports the use of medical interventions in adolescents and young adults with autism. The most consistent findings were identified for the effects of antipsychotic medications on reducing problem behaviors that tend to occur with autism, such as irritability and aggression. Harms associated with medications included sedation and weight gain.
• Only five articles tested vocational interventions, all of which suggested that certain vocational interventions may be effective for certain individuals, but each study had significant flaws that limited the researchers’ confidence in their conclusions. The researchers’ findings on vocational interventions will be featured in the Aug. 27 issue of Pediatrics.

Backlash to Speculation

Emily Willingham kicks the "inflammatory disease" notion to the curb:

What we have here is an argument that relies on shaky and shifting hypotheses of autism and autoimmune epidemics and hygiene, built using sparse data and scientific hints, a poor understanding of basic evolution and ecology, and a paradox of calling for a return to a more infectious past to “cure” autism while blaming immune-dysregulated, occasionally infected mothers of the present for … autism. In his closing, Velasquez-Manoff argues that evolution provided us with a roadmap of the original microbial and parasitic ecosystems we once were, one that, presumably, if we follow it, will guide us out of the “insanity” and “affliction” that is autism. If it’s possible, that’s where he’s most wrong. Evolution isn’t something that happens with a plan. To describe it in those terms is to have a profound failure of understanding of what evolution is. Where we’re going, evolutionarily speaking, there are no roads. And it would be better for most of us if there weren’t any parasitic worms, either.

Back in October, she wrote about "Being Alive Linked to Autism" (caution, strong language in the full piece)

T his last week or so, every day seemed to bring a new finding about something linked to autism. I blogged one of them--diabetes--but who really would have the wherewithal to follow the growing list of factors linked to autism? I guess I would because below, I give you that very list, including current pop hits and some blasts from the past, with some brief commentary. Without further ado--The ever-changing face of autism--or, as some have wisely suggested we call it--the autisms:

Refrigerator mothers. Sooo coooold.
...
Mercury. Sigh.
"Environmental" chemicals. Hmmm.
The Interwebz. Someone pointed to them. Then there was autism.
Older fathers. Paging Father Abraham.
Older mothers. We can only be so old, you know.
Depressed or stressed mothers. Wouldn't everyone have autism, then?
PrematuritySib with autism. Autism, family style.
Low birthweight. OK, but what about...
High birthweight. Confusing, isn't it?
...

More Speculation on Causes and Treatments

Robin Hausman Morris notices a surge in media speculation about causes and medical treatments:

Today, the NYTimes reports: An Immune Disorder at the root of Autism. We are told So here’s the short of it: At least a subset of autism — perhaps one-third, and very likely more — looks like a type of inflammatory disease. And it begins in the womb. Check one for the mother’s fault.

Not to be outdone, it might be the fathers. The Clock Ticks for Men as well :in a fraction of cases — increased mutations found in the sperm of older men meant that they were more likely than their younger counterparts to father children with autism or schizophrenia. Go figure.

Big Chem, Big Harm indicates that it’s about PLASTICS! “And here's to you, Mrs. Robinson…Jesus loves you more than you will know (Wo, wo, wo)” Reported by Nicholas Kristof, we have a chemical problem: One of the most common and alarming is bisphenol-A,better known as BPA. The failure to regulate it means that it is unavoidable. BPA is found in everything from plastics to canned food to A.T.M. receipts. More than 90 percent of Americans have it in their urine.

Finally, stem cell therapy for autism got a pitch in Bloomberg. Responses were rampant. Is stem cell therapy for autism just another hoax? The food for thought in answering this question is led by Scott Pelly of 60 Minutes: Stem Cell Fraud: A Sixty Minutes Investigation (video here). The most riveting comment in this report is a sting for vulnerable parents "Con-men offer hope that science cannot." Invaluable words.

A previous post discussed speculation about gut bugs.  Time reports:

Autism research has been the victim of junk science for a long time, principally as a result of the fanciful — and scientifically disproven — idea that the condition is caused by vaccines. That makes it harder for serious scientists to look at other, seeming improbable causes of the condition like the microbiome, at least without raising a lot of skepticism. Making things worse, the seminal, and discredited, study in the autism-vaccine mess suggested that traces of vaccine-related measles virus could be found in the guts of autistic kids, further muddying legitimate study of any real gut-bug connection.

Now, however, the research is emerging from under that cloud, and while no one has established a direct link between gut bacteria and autism just yet, the findings so far are intriguing. Up to 85 percent of children with autism also suffer from some kind of gastrointestinal distress such as chronic constipation or inflammatory bowel disease. Research published in 2005 in the Journal of Medical Microbiology and in 2004 in Applied Environmental Microbiology reported that the stools of autistic children contained higher levels of the bacterium Clostridium, while two 2010 studies in the Journal of Proteome Researchand Nutritional Neuroscience reported unusual levels of metabolic compounds in autistic children’s urine consistent with the high bacterial levels found in the stools of autistic patients. In 2011, a study published in Proceedings of the National Academy of Sciences found that mice with essentially germ-free guts showed abnormal movement and anxiety symptoms, suggesting that at least some active intestinal biome is essential for normal development.

Inflammatory Disease?

At The New York Times, Moises Velasquez-Manoff suggests that at least one third of autism cases are "a type of inflammatory disease." 

It starts with what scientists call immune dysregulation. Ideally, your immune system should operate like an enlightened action hero, meting out inflammation precisely, accurately and with deadly force when necessary, but then quickly returning to a Zen-like calm. Doing so requires an optimal balance of pro- and anti-inflammatory muscle.

In autistic individuals, the immune system fails at this balancing act. Inflammatory signals dominate. Anti-inflammatory ones are inadequate. A state of chronic activation prevails. And the more skewed toward inflammation, the more acute the autistic symptoms.

No doubt there will be much commentary on this article in the days ahead.  For now, note one specific claim.  The author says that, like asthma, autism is more common in urban areas than rural. But there is an obvious alternative explanation.  It is harder to get screening in diagnosis services in rural areas, so diagnoses there tend to come later and less frequently.

Paternal Age, Press Attention

The Nature study linking paternal age to autism is getting a great deal of media attention. K.J. Dell’Antonia writes at The New York Times:

On Wednesday, various news organizations, including The New York Times on its home page, reported findings of a high-profile study in the journal Nature. There was convincing evidence, the study concluded, that — in a fraction of cases — increased mutations found in the sperm of older men meant that they were more likely than their younger counterparts to father children with autism or schizophrenia.

Reaction was immediate. More than 500 commentersweighed in at NYTimes.com. Blogs from SheKnows.com toTime’s Healthland ran with the news. Some sites got accusative: “Are Older Fathers Causing Autism in Their Kids?” demanded the Dadding blog at Babble.com.

The news reflected widespread interest in the confusing causes of this still-unexplained condition. But it also produced a stream of headlines like this one on Jezebel.com: “Hooray for the Male Biological Clock!” And female news anchors like CNN’s Ashleigh Banfield cheered the report because, as she put it: “I had my babies at 38 and 39, and I was terrified. Honey, you’re in the conversation now.”

A news article in Nature adds detail:

The results might help to explain the apparent rise in autism spectrum disorder: this year, the US Centers for Disease Control and Prevention in Atlanta, Georgia, reported that one in every 88 American children has now been diagnosed with autism spectrum disorder, a 78% increase since 2007. Better and more inclusive autism diagnoses explain some of this increase, but new mutations are probably also a factor, says Daniel Geschwind, a neuro­biologist at the University of California, Los Angeles. “I think we will find, in places where there are really old dads, higher prevalence of autism.”

However, Mark Daly, a geneticist at Massachusetts General Hospital in Boston who studies autism, says that increasing paternal age is unlikely to account for all of the rise in autism prevalence. He notes that autism is highly heritable, but that most cases are not caused by a single new mutation — so there must be predisposing factors that are inherited from parents but are distinct from the new mutations occurring in sperm. 

The study has even made CBS News:

Animals for Autism Scam -- The Resolution

Earlier posts described  a bogus outfit called "Animals for Autism." AP now reports:

An Illinois woman has agreed to pay restitution after being accused of a scam in which she allegedly promised to provide specially trained companion animals for children with autism.

Attorney General Lisa Madigan says Lea Kaydus had collected more than $5,000 through her organization, Animals for Autism. Kaydus lives in Glenarm, near Springfield.

In some cases, families got pictures of the puppies that were supposedly being trained to work with their children. In reality, the pictures had been taken years earlier and the dogs had no connection to Animals with Autism.

Madigan called the organization "a heartless scam" Thursday.

To settle a lawsuit filed by the attorney general, Kaydus agreed to repay the money she collected and abide by state fraud laws in the future.

Class-Action Suit Against Cigna

A press release from the law firm of Mantese Honigman Rossman and Williamson:

A federal court in Philadelphia yesterday granted class action status to a lawsuit brought by the parents of an autistic child against CIGNA Corporation and related CIGNA entities for their policy of denying insurance coverage for an autism treatment known as Applied Behavior Analysis (ABA) therapy. In their lawsuit, the plaintiff, Kristopher Churchill and Luis Rolando, allege that the CIGNA companies have a nationwide policy of classifying ABA as experimental, and therefore they do not provide insurance coverage for this therapy. The plaintiffs claim that the classification of ABA as experimental and the denial of insurance coverage for ABA violates federal laws governing insurance plans. The court's order today means that the case will proceed as a nationwide class action on behalf of all families having children with autism who were denied coverage by CIGNA for ABA therapy.

Judge Juan Sanchez's memorandum is here:

On September 2, 2011, after a brief discovery period, Churchill filed a Second Amended Complaint adding Luis Rolando as a named Plaintiff.4 Rolando is a current member of an employer health plan sponsored by NetApp and administered by CIGNA. Rolando's son, a beneficiary of Rolando's NetApp Group Welfare Plan, suffers from ASD and received ABA therapy, which was specifically covered under the NetApp Plan. In the Second Amended Complaint, Plaintiffs allege CIGNA improperly denied insurance benefits to cover their sons' ABA treatment in violation of § 502(a)(1)(B) and (a)(3) of the Employee Retirement Security Act (ERISA), 29 U.S.C. § 1132(a)(1)(B) and (a)(3). Rolando seeks benefits due pursuant to § 1132(a)(1)(B) and equitable relief pursuant to § 1132(a)(3) [emphasis added]

The case bears watching because ERISA plans are not subject to state insurance mandates.

Speculation About Causation

An article in The Economist (h/t Ward Elliott) has some speculation about the causes of autism:

A well functioning microbiome is not one without internal conflicts—there is competition in every ecosystem, even stable, productive ones. Clostridia kill bacteria competing for their niches with chemicals called phenols (carbolic acid, the first antiseptic, is one such). But phenols are poisonous to human cells, too, and thus have to be neutralised. This is done by adding sulphate to them. So having too many Clostridia, producing too many phenols, will deplete the body’s reserves of sulphur. And sulphur is needed for other things—including brain development. If an unusual microbiome leads to the gut needing extra sulphur, the brain may pay the price by developing abnormally.

Whether this actually is a cause of autism is, as yet, unproven. But it is telling that many autistic people have a genetic defect which interferes with their sulphur metabolism. The Clostridia in their guts could thus be pushing them over the edge.

Father's Age and Autism

Previous posts have discussed evidence concerning a possible link between autism and paternal age. The New York Times reports:

Older men are more likely than young ones to father a child who develops autism or schizophrenia, because of random mutations that become more numerous with advancing paternal age, scientists reported on Wednesday, in the first study to quantify the effect as it builds each year. The age of mothers had no bearing on the risk for these disorders, the study found.

Experts said that the finding was hardly reason to forgo fatherhood later in life, though it may have some influence on reproductive decisions. The overall risk to a man in his 40s or older is in the range of 2 percent, at most, and there are other contributing biological factors that are entirely unknown.

But the study, published online in the journal Nature, provides support for the argument that the surging rate of autism diagnoses over recent decades is attributable in part to the increasing average age of fathers, which could account for as many as 30 percent of cases.

Emken, Autism, and Abortion

At The Los Angeles Times, Patt Morrison interviews Elizabeth Emken, autism mom and former vp for government relations at Autism Speaks:

Abortion rights is one clear difference between the parties.

You have to know my personal story. My son is a blessing in every way. He's one of the hardest-working, happiest children you'll meet. The genetics of autism are real, but there are also environmental triggers. If we can identify that you're vulnerable for something [like having an autistic child] and that becomes enough of a reason not to take a risk [of giving birth], that's a slippery slope. And it stops us from addressing what I think is the true culprit — changes in our environment that have led to a huge increase in not just autism but a lot of auto immune disorders and mental disorders. So my view on life comes from an angle that we sometimes take the easier path rather than the more difficult one.

What do you mean by an easier path? To have an abortion?

Yes. My view on valuing life is very broad for the disabled, for anyone where we can start saying, I really don't want [a child with] red hair.

 Women choose to have abortions for very serious reasons, including the health of the fetus. Shouldn't they be able to do that?

I reject the premise of Democrat and Republican, you can't paint me in a narrow box.

But ultimately, women can get an abortion, or they can't.

 I personally believe it will remain legal. I'm not interested in turning the clock back 30 or 40 years. Let's talk about what it is to value all human life and why we want to rethink how we're using abortion [as] birth control.

Data on Autism Research

An earlier post mentioned questions about the distribution of autism research funds.  Disability Scoop reports on another IACC/OARC study:

As autism prevalence rates skyrocketed over the last three decades, so too did the volume of research into the developmental disorder, according to a first-of-its-kind analysis.

There was a 12-fold increase in the number of scientific journal articles focused on autism in the last 30 years, according to a report released late last week by the global information firm Thomson Reuters.

The analysis is based on a review of journal articles indexed in the Thomson Reuters ScienceWire Publication Catalog between 1980 and 2010. It was produced in collaboration with the Interagency Autism Coordinating Committee, a federal advisory panel charged with identifying autism research priorities.

Most autism research conducted over the three decades focused on the biology of autism, risk factors for the disorder as well as treatments and interventions, the analysis found. There was a lesser emphasis on infrastructure and surveillance, studying lifespan issues and services research, though all areas saw an uptick in interest from scientists.

Two figures from the report: 
 

The Gap

The Des Moines Register reports on a gap in services for high-functioning ASD adults:

While it is a lifelong developmental disability, autism is not labeled as an intellectual disability.
That is an important distinction because most public and private support agencies helping people find work or community involvement focus only on individuals with intellectual disabilities.

Adults with autism who aren’t working cannot pay fees to get into the few supporting programs that may help them. Public money pays most of the bills.
...
Chelsey Holmes, associate program director at the Arc, said the most typical funding resource for the Arc and similar agencies is Medicaid, the state and federal program that pays for medical care for the disabled, the poor and some other groups.

“If some people on spectrum don’t qualify for an intellectual disabilities waiver or don’t have a diagnosis of brain injuries, then they may not be qualified for the services,” Holmes said. “So there is a little bit of gap for people on the autism spectrum, especially those that are higher functioning.”

Steve Muller, executive director of the Homestead in Altoona, said that unemployment or underemployment is one of the most serious concerns for adults with autism, “especially among those with an IQ of 75 or above.”

“Funding for helping adults with any developmental disability, including autism, is severely limited in Iowa,” Muller said. “The few that receive funding have a diagnosis of mental retardation and autism, leaving many without supports. This is a critical problem.”

The Cost of Educating Special-Needs Students

Associated Press reports:

The high cost of educating students with special needs is disproportionately falling on traditional public schools as other students increasingly opt for alternatives that aren't always readily open to those requiring special education.

The issue is particularly acute in districts where enrollment has declined due to demographic changes such as low birth rates and population shifts combined with an influx of charter schools and voucher programs that have siphoned off students.

...

While the number of students with special needs has not increased, the rising proportion has driven up costs for cash-strapped schools. Special education, which requires speech pathologists, psychologists and trained teachers, and sometimes special facilities and equipment, can cost four times more than general education. Federal funds only cover a fraction of the extra expense.

Charters take students with disabilities, but the students with more intense needs tend to go to the traditional public schools:

Special needs enrollment in Philadelphia district schools and charters is roughly 14 percent, but about half the district's pupils with special needs have severe disabilities compared to about a third for charters.

Charter proponents say schools do not turn away kids with disabilities or ask if an applicant has disabilities, which is illegal, and note that in six states — Nevada, Wyoming, Iowa, Ohio, Virginia and Pennsylvania — charters serve more pupils with special needs than local districts

...

Parents like Matthew Asner, whose 9-year-old son with autism attends a traditional Los Angeles Unified school, hope the issue gets figured it out soon. He'd like the fourth-grader to go to charter middle and high schools, but knows it's a challenge to find one that accommodates autistic students and has openings.

"I don't think we've got a good handle on this," said Asner, who is executive director of Autism Speaks , an advocacy organization. "We don't want to see this kind of exclusion."  [ed. note: He is the executive director of Autism Speaks for Southern California.  Liz Feld is the CEO of the national organization.]

People in the autism community may wonder about the claim that the absolute number of special-needs students has not risen.  But consider data from The Digest of Education Statistics.

Between the 1999-2000 and 2009-2010 school years, the number of children getting services for autism soared from 65,000 to 378,000. But the numbers dropped in several other categories: for instance, intellectual disabilities went from 600,000 to 463,000.  While not conclusive, these numbers are consistent with the idea that diagnostic substitution accounts for at least part of the rise in autism numbers.  In any case, the total number of students getting IDEA services peaked several years ago.

Ethics and the Corby Case

Sorry for the multiple posts on this topic.  But as an autism dad and organ donor (kidney), I have more than the usual interest.

At First Things, Wesley Smith writes:

Wait a minute. Without the surgery, he will probably die. Risk the behavior issues.

If someone’s mental condition makes it unlikely they will be able to care for themselves properly after transplant to the point of becoming medicallycompromised, it could be one thing, given the current triage for organs. But we should not deny transplants simply because of things like autism, Down syndrome, or invidious ”quality of life” judgmentalism. That denies human exceptionalism and unacceptably discriminates against those with mental illnesses and developmental disabilities.

A Fence

It's obvious that autism involves such issues as education, health care, and insurance.  But as we've seen, it also involves issues with which we might not normally associate it, such as air transportation and firefighting.  For instance, land use and contract law come into play. WBBM in Chicago reports:

AP Covers the Heart Transplant Story

The Associated Press is covering the story of Paul Corby, the young ASD man who did not qualify for a heart transplant, in part because of his ASD.

One expert on medical ethics said it's legitimate for the mother to raise the point, but there's an even bigger one, too.

"The thing to keep in mind is if more of us would sign donor cards, there would be less pressure to reject anybody. It's the huge shortage of hearts that really drives this problem," said Arthur Caplan, head of the Division of Medical Ethics at New York University's Langone Medical Center.

...

Mindful of a similar incident in Philadelphia where a New Jersey family's daughter was denied a kidney transplant because of mental disabilities — a decision that went viral online — [Karen] Corby began her own online petition.

"There has been a huge outpouring of support from Autism groups all over the country," she said in an email to The Associated Press, noting that the number of signers has jumped from 1,500 in April to just more than 13,000 on Thursday. "I would not have found the strength to continue fighting had it not been for them."

AP coverage makes a huge difference in gaining prominence for a story.  As of 4:07 PM PDT, more than 55,000 people had signed. 

On YouTube, a person with cerebral palsy endorses the petition:

Partnership in Utah: Money is Slow to Arrive

A previous post described the Utah partnership program that has been short on private-sector donations so far. The Salt Lake Tribune reports:

Elected leaders celebrated Wednesday a public-private partnership that will fund a new autism treatment pilot, but the exact financial commitment by a Utah bank and insurance companies is yet to be disclosed.

Only Intermountain Healthcare said after a press conference at the state capitol that it planned to contribute $500,000 to the two-year program. The state has yet to receive any donations.

A Regence BlueCross BlueShield representative attended but said the company does not plan to contribute to the pilot, having contributed $450,000 through its foundation to an autism program at the University of Utah last year. Zions Bank has said it will make a donation but has declined to specify the amount.

Altius was named as a donor in a press release but did not attend the conference and did not return a call for comment.

DSM-5 and Insurance in Illinois

A previous post discussed Illinois legislation to prevent ASD people in Illinois from losing insurance coverage if they lose their diagnosis under DSM-5. The Elmhurst Patch reports:

Elmhurst Mayor Pete DiCianni was at the Thompson Center in Chicago Thursday, Aug. 16, to witness Gov. Pat Quinn sign Senate Bill 679. The new law ensures children diagnosed with autism will not lose their insurance coverage.

In its fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, the American Psychiatric Association is proposing a more specific set of indicators for a diagnoses of autism. The reason for the change is to help ensure more targeted treatments, but the new definition threatened to take away coverage for some 20,000 children.

SB 679, a bipartisan effort, "grandfathers" those children in so their insurance coverage won't be cut off. It will ensure them continued coverage of up to $36,000 a year and unlimited doctor and and therapy visits.

A Plane and an iPad

Air travel can be tough for people on the spectrum, as previous posts have explained. ABC News reports:

A teenager with autism, flying on American Airlines, was nearly forced to turn off the iPad she uses to communicate.

Carly Fleischmann, who has been profiled on ABC News, was flying from Los Angeles to her home in Toronto on Aug. 10 when she was approached by a flight attendant who told her she needed to turn off her iPad during takeoff. The trouble is, if Fleischmann can't use her iPad, she can't communicate. Because of autism, she cannot speak.

Howard Dalal, Fleischmann's aide and lead therapist, was with Fleischmann on the flight. He told ABC News Fleischmann suffers from Oral Motor Apraxia, which means her thoughts are clear in her mind, but they get jumbled on the way to her mouth. She lacks the fine motor skills to use a pen, and only knows a little sign language. She types with one finger.
...
The flight attendant who approached Fleischmann was eventually overruled by the pilot, who said Fleischmann could leave her iPad on. Dalal said they met up with the pilot again at customs in Toronto, and he told Dalal and Fleischmann that the policy was "ridiculous." Further, Dalal said that the pilot said the pilots themselves use iPads during takeoff and landing.

"There is virtually no evidence that any consumer electronics can or have had any deleterious effect on the aircraft systems, and least of all would be an iPad in airplane mode," said John Nance, ABC News aviation consultant. "The slavish 'we're just following orders' response of airline personnel in the face of unusual challenges is sad at best, and reprehensible at worst."

Troubled Security at CA Developmental Centers

Previous posts have discussed severe problems at state-run institutions.  California Watch reports:

The in-house police force at California’s institutions for the developmentally disabled is searching for a new chief as scrutiny of its work on criminal investigations intensifies.

After two years in the top job, Corey Smith received a demotion to second-in-command for the force, the Office of Protective Services. David Montoya, police commander at the Porterville Developmental Center, is serving as interim chief, according to the state Department of Developmental Services’ website.

The department, which oversees the centers and the police force, has repeatedly hired police chiefs with little to no background in law enforcement.

In its job posting, released Aug. 6, the department said applicants need “extensive management experience directing uniformed peace officers and investigative operations.” However, the posting does not detail how many years of police work or what level of education the next chief must have.

The personnel moves come as state lawmakers last week ordered the California State Auditor to examine the police force’s operations [PDF]. The Office of Protective Services is responsible for protecting nearly 1,700 patients with cerebral palsy, mental retardation and severe autism at five state-run centers in Los Angeles, Sonoma, Orange, Riverside and Tulare counties.

In an ongoing series of stories this year, California Watch has reported that detectives and patrol officers at the institutions routinely fail to conduct basic police work, even when patients die under mysterious circumstances

Seclusion Confusion in Florida

A fog of uncertainty and confusion surrounds many of the statistics on autism and general disability. Following a report from last week, State Impact reports on the latest example:

Last week, we posted data we received from the Florida Department of Education on the instances of student seclusion and restraint in Florida schools.
Readers chimed in saying they’ve seen different data. And we’ve figured out why.

The Florida Department of Education keeps two sets of student seclusion and restraint data.

Every incident is supposed to be recorded in both reports. But the FLDOE says school districts may not know that.

One set of FLDOE data shows more than four times as many students were isolated in seclusion rooms than a second set of data we used, the School Environmental Safety Incident Report (SESIR).

Neither of those figures probably reflects the total instances of seclusion and restraint, though state officials say school districts should be recording incidents of seclusion and restraint in both reports.

ASD and a Heart Transplant

An earlier post dealt with Paul Corby, a 23-year-old man facing denial of a heart transplant in part because he has ASD.  Left Brain/Right Brain reports:

Earlier this year a story came out about a child being denied a transplant due to developmental disability. Now we have a story of an autistic adult possibly being denied a heart transplant due to autism. In Medical debate: Should autism block a man from getting a heart transplant? we read:

Twenty-three-year-old Paul Corby has a bad heart and a flawed mind.

The question before doctors now is whether his mental problems – he has a form of autism – are severe enough to make him a bad candidate for a heart transplant.

How characterizing him as having a “flawed mind” is helping, at all, is a good topic for discussion on its own.

Jonathan Dobrer puts a provocative frame on the issue:

A spokeswoman for the hospital said, "The physicians involved believe that any discussion of the specifics of his case would be most unkind to him and therefore will not comment."

This is a phrase of such cruel and ironic bureaucrat-ese that it defies parody. Disclosing the reasons for allowing him to die would be "unkind" but allowing him to die is, well, what: Kindness itself?

Yes, Paul is quirky and geeky. He plays video games, has written one self-published novel and is working on another. He seems to have a mental and intellectual quality of life worthy of continuing. As a person with autism, he has developmental issues and is not always socially appropriate, according to our normal rules. None of his behaviors seems to warrant the death penalty, which is exactly what the University of Pennsylvania Hospital is imposing by its refusal to treat.

Delaware Mandate

WCAU in Philadelphia reports (with text by AP)::

A new law in Delaware requires that individual health insurance plans provide coverage for the diagnosis and treatment of autism spectrum disorders.

Legislation being signed by Gov. Jack Markell on Monday requires coverage and treatment of autism spectrum disorders in individuals under 21 years old.

Senate Bill 22 also prohibits insurers from terminating or refusing to renew coverage to an individual solely because the individual or a family member is diagnosed with one of the autism spectrum disorders or has received treatment for autism spectrum disorders.

 

More detail from Autism Speaks:

Sponsored by Senators Liane Sorenson and Catherine Cloutier, S.22 requires up to $36,000 in coverage for Applied Behavior Analysis (ABA), an evidence-based, medically necessary autism therapy. The law takes effect in four months as each state-regulated health plan is renewed or offered.

“Governor Markell has demonstrated leadership on an issue of critical concern to thousands of Delaware families,” said Lorri Unumb, Esq, Autism Speaks vice president for state government affairs. “His leadership is also now being felt nationally as chairman of the National Governors Association (NGA) through his support for expanding employment opportunities for the disabled.

Seclusion in Ohio and Florida

A number of posts have discussed restraint and seclusion in public schools. At ThinkProgress, Aviva Shen writes of Ohio and Florida:

To discipline misbehaving students, public schools in Ohio and Florida regularly send children to “seclusion” — isolation in a locked cell-like room, old office, or closet,NPR’s State Impact reports. Many of these children are special needs students and their parents are not always told of this disciplinary practice.

Ohio schools — where seclusion is almost completely unregulated — sent students to seclusion rooms 4,236 times in the 2009-2010 school year. Sixty percent of these students had disabilities.

Florida schools secluded students 4,637 times in 2010-2011 and 4,193 in 2011-2012. 42 percent of seclusions were for pre-K through 3rd graders. In the 2011-2012 school year, 300 seclusions lasted more than an hour. The state has just three stipulations for using seclusion rooms: teachers may not choke or suffocate students, the room must be approved by a fire marshal, and the lights must be left on.

A joint report by StateImpact and Columbus Dispatch report found rampant abuse and lack of training of the punishment, which is meant as a last resort to deal with violent children...

Autism Speaks and the Presidential Race

The 2008 campaign was the first in which presidential and vice presidential candidates spoke at any length about autism. (Hillary Clinton, in particular, had a record on disability policy dating back to her early work with the Children's Defense Fund.)  The issue has come up again in the 2012 campaign. A message from Autism Speaks:

On November 6, 2012, voters across the United States will go to the polls to elect our next President and a new Congress. Autism Speaks is asking all candidates seeking to serve our country after this election to advance a federal autism policy that will commit to these following principles:

• a national plan to address the autism crisis with urgency
• principled leadership to guide the federal response to autism
• accountability for results from the federal research investment

A summary of our 2012 policy principles is here.As a tax-exempt organization, Autism Speaks does not endorse any candidates for federal office. As an informational service to the autism community, we will, from time to time, post video or other content showing how autism-related issues are being discussed in the 2012 campaign.

Stay Informed! Register for Autism Votes Here.

Register Online to Vote Here. Do It Today!

Implementing the TRICARE Decision

The parents of ASD child Zachary Berge won TRICARE coverage in an important federal case.  But it appears that TRICARE has not gotten the word.  The Northwest Florida Daily News reports:

During the nearly two years the class-action lawsuit wound through the court system, the Berges paid out of their pocket and took out a second insurance policy to help pay for the therapy. They also received some assistance from a state-funded program for children with disabilities.

Dawn said that although they're happy the judge ruled in their favor, she and her husband have yet to notice any change in the way their claims are handled by TRICARE.

"We aren't sure yet," she said when asked how the judge's ruling might help them financially. "Right now, we're uncertain what's going to happen.

"Even though a judge has ruled that we won, we're still battling as far as getting coverage," she said. "Every time we call TRICARE and try to get some answers, they say, 'We don't know what you're talking about. We have to respect the policy as it's written and (ABA) isn't covered.' "

Suspensions

Previous posts have described how disabled kids often end up in seclusion and restraint when they get in trouble at school. Sometimes the schools just send them home. The Center for Civil Rights Remedies at UCLA's Civil Rights Project has a new report on suspensions from school:

• For all racial groups combined, more than 13% of students with disabilities were suspended. This is approximately twice the rate of their non-disabled peers.
• Most disturbing is the fact that one out of every four (25%) Black children with disabilities enrolled in grades K-12 was suspended at least once in 2009-2010.
• Students with disabilities and Black students were also more likely to be suspended repeatedly in a given year than to be suspended just once. The reverse was true for students without disabilities and for most other racial/ethnic groups. 

Bizarre Speculation That Romney Has ASD

On Stephanie Miller's syndicated radio program, former MSNBC host David Shuster engaged in the bizarre speculation that Mitt Romney has ASD:

Every time you hear Mitt Romney speak these days I keep thinking about I have an uncle who specializes in the field of Asperger's, and people with autism, and has been making the point to me for several years that there’s some very brilliant creative people who have Asperger's and he’s suggested perhaps that Mitt Romney has some sort of form of Asperger's because he’s so socially inept in terms of being able to connect with people.

What he thinks is funny is really sort of not so funny. I sort of wonder if there is some sort of tic that he has or something that’s related to that.

This comment is just the latest example of a disturbing trend:  trivializing ASD by using it as a synonym for social ineptitude.  Natalie Palumbo, a teenager whose brother has ASD, writes at The Age of Autism:

I have noticed a trend among younger entertainers to use the term “autistic” as the new R-word. As it has become socially unfashionable to use the term “retarded” as a negative descriptive, the term “autistic” seems to be taking its place. I have heard internet personalities refer to someone as “autistic” when they want to insult their intelligence or mock their behavior. I live in a world where it is close to impossible to get proper help for my brother, and now his condition is being trivialized to being nothing more than a term used to insult. I fear the word autism will become as meaningless as current slang. With the epidemic growing, this is especially troubling to think no one will take it seriously. I face a lifetime of being a caregiver for my brother and therefore social attitudes and trends affect my life.

Shuster's gaffe is not as bad as Joe Scarborough's, but both of them need to think before they mention autism on the air.

Man with ASD Denied Heart Transplant

Karen Corby is trying to get a heart transplant for her 23-year-old son, who is on the spectrum. There is an online petition.  Joslyn Gray reports at strollerderby:

According to the Corbys, and according to a letter from Penn Medicine which they shared with me, Paul has been denied the placement in large part because he is autistic.

 I’m going to let that sink in for a moment.

The letter from the transplant physician at PennMedicine, part of the University of Pennsylvania, states:

“I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures, and the unknown and unpredictable effect of steroids on behavior.”

 

The post avoid sensationalism, however, by providing professional perspectives:

Meanwhile, a 2006 study out of Ohio State University found that organ transplants on patients with cognitive impairment are equally likely to be successful as on other patients.

Available donor hearts are a precious resource, said noted heart transplant expert Dr. Jay Cohn, MD, FACC in an email to me. Dr. Cohn is a Professor of Medicine at University of Minnesota Medical School, the Director of the Rasmussen Center for Cardiovascular Disease Prevention, and Chairman of the Ethics Committee of the Heart Failure Society of America.

“The decision by this transplant program to reject him does not imply that they would reject all candidates with autism,” Dr. Cohn added. “Furthermore, each program has its own criteria and other programs might reasonably come to a different conclusion. Institutional care in selecting what they deem as suitable selection of patients for the precious commodity of a donor heart should be encouraged, not criticized. This family might well approach a different center to seek a different judgment.“The decision to recommend heart transplant is an individual judgment based on many factors,” explained Dr. Cohn in his email, “including the overall health and prognosis of the recipient, the impact of co-morbidity on the procedure risk and the post-op management, the potential interaction of background drug therapy on the drugs necessary to inhibit rejection, need for follow-up, etc. These issues cannot be captured in a single diagnostic term such as ‘autism.’"

Report on Transition Services

The Government Accountability Office reports:

Students with disabilities face several longstanding challenges accessing services that may assist them as they transition from high school into postsecondary education or the workforce—services such as tutoring, vocational training, and assistive technology. Eligible students with disabilities are entitled to transition planning services during high school, but after leaving high school, to receive services that facilitate their transition they must apply as adults and establish eligibility for programs administered by multiple federal agencies. Students with disabilities may face delays in service and end up on waitlists if these programs are full. In addition, while all five states GAO contacted have taken steps to coordinate their transition services and assist families with the transition process, officials said that it is still difficult for students and their parents to navigate and for providers to coordinate services across different programs. 

...

The Departments of Education (Education), Health and Human Services (HHS), and Labor (Labor), and the Social Security Administration (SSA) coordinate transition activities to some degree, but their coordination has limitations and they do not assess the effectiveness of their efforts.

Some detail from the report:

Officials in each of the states we contacted also said that certain groups of students with disabilities are more likely to face limited service options or gaps in service because their disabilities may be less visible or because they are less likely to qualify for adult programs. These groups include students with developmental or cognitive disabilities, learning disabilities, mental health disabilities, autism, and mild disabilities.

Autism Summit?

An August 2 message from The Autism Society:

Addressing a need for all autism advocates to call for change with one clear voice, the Autism Society plans to organize a summit of national autism organizations this fall, Dr. Jim Ball, chairman of the Autism Society, announced at last week’s conference. “It’s time all autism organizations increase their collaboration and define the areas in which we all will work together to improve lives, “said Dr. Ball.

The Autism Society’s goal for this summit is to bring together leaders of national autism organizations to discuss and agree on a series of collaborative efforts to significantly advance the dignity, self sufficiency, autonomy and independence of all individuals on the autism spectrum. Interested national organizations are encouraged to contact Scott Badesch, President of the Autism Society, if they are interested in participating in the summit.

Michelle Diament reports at Disability Scoop:

“The infighting that a lot of times characterizes the autism community needs to stop,” said Scott Badesch, president of the Autism Society. “Until we come together, we’re not going to be able to move the needle on enhancing autism services.”

Tension has been brewing for years with parents and even professionals at odds over everything from possible causes of the developmental disorder to whether precious dollars should be spent on research or services for those on the spectrum.

As a result, Badesch said he sees many other interest groups getting a stronger reception locally and in Congress, citing elderly Americans and the gay and lesbian community as examples. By working together with a united front, Badesch said he hopes autism advocates can be more productive.

...
Inquiries from Disability Scoop to four other national organizations advocating for individuals with autism about the proposed summit did not yield any response Monday.

Under-Diagnosis Among Girls?

Pasha Bahsoun writes at The LA Special Education Examiner:

A new study published in the Journal of the American Academy of Child & Adolescent Psychiatry explores the differences in diagnostic characteristics of autism between boys and girls, suggesting a gender bias in which girls with "high-functioning" autism are underdiagnosed.
...
The researchers compared data from 363 girls and boys aged between ten and twelve years of age, 189 of whom were diagnosed with ASD and 174 of whom did not meet the diagnostic criteria for ASD, but still received high scores on empirical measures of ASD traits. Behavioral and intellectual deficits were also examined.

After comparing this data, the researchers found that the girls, rather than the boys, who met the criteria for ASD had a significantly higher prevalence of low intellectual levels and behavioral difficulties. This suggests that in lieu of behavioral and intellectual deficits, girls are less likely to be diagnosed with ASD than boys. This may be due to the fact that girls who meet some of the criteria for a diagnosis of "high-functioning" autism (those who did not demonstrate low intellectual levels or behavioral deficits) may possess better adaptive or compensatory skills, leading to the gender bias in diagnosis.

An Unfortunate Case in Montana

As previous posts have mentioned, institutional placement can go very wrong. The Billings Gazette has Eve Byron's story about a young ASD man who fared so poorly at the Montana Developmental Center that a state hearings officer ordered the state to send him to the Kennedy Krieger Institute at the cost to the state and federal government of $711,000.

He’s become the most expensive state client using a state program for individuals with developmental disabilities that provides community-based services to people.

After he was released from the Baltimore facility in 2009, he moved to a Montana assisted-living facility.

The average cost for a client using the program, known as a Medicaid waiver, is about $39,000 per year, paid for by state and federal funds.

The cost of the young man’s care runs anywhere from $306,000 to $367,000 a year.

... 

He was evaluated in December 2007 by Dr. Diane Edwards, an expert in developmental and behavioral pediatrics, who recommended he be transferred to Kennedy Krieger. She concluded that his behaviors worsened both in frequency and severity while at MDC.

In fact, Edwards and others reported that his treatment at MDC was counter-therapeutic.

Other doctors testified at the hearing that psychiatric care at MDC was substandard. Hearings officer Joseph Sternhagen noted in his report that the boy’s medication management was being done by MDC’s psychiatrist, who saw the boy about once a month on average.

It said the psychiatrist saw the boy only once in a three-month period, despite knowing he was going to be transitioned to a different housing unit, which was traumatic to the boy.

“It was during this time that (the boy) lacerated his forehead so severely that he had to be transported to the hospital emergency room, however stitches could not be applied because of his unstable behavior and not surprisingly, four days later (the boy) reopened the wound at MDC,” Sternhagen wrote.

The Claremont Autism Center

Wakefield Can't Sue in Texas

The Austin American-Statesman reports:

Andrew Wakefield, who was stripped of his British medical license in 2010 for autism research that ignited a worldwide vaccine scare, cannot sue a U.K. medical journal, its editor and a British reporter for defamation in Texas, a judge in Austin ruled Friday.

In a one-paragraph order, Travis County District Judge Amy Clark Meachum said Texas courts don't have jurisdiction over the defendants. She tossed out the case.

Wakefield, who is 55 and lives in Austin, vowed to appeal. "We think we have a very good argument" to pursue, said Wakefield, who says he is working in Austin but declined to say where.

Wakefield has previously sued reporter Brian Deer in the U.K., but he withdrew those suits because, he said, he was dealing with a hearing on his medical license before U.K.'s General Medical Council, which regulates doctors. The council found Wakefield guilty of serious professional misconduct, citing dishonest, irresponsible research he performed in 1998; actions contrary to the interests of children; conflicts of interests regarding his involvement in a lawsuit against a measles-mumps-rubella vaccine; and failing to disclose his involvement in seeking a patent for a rival vaccine.

Questions About Research Priorities

From the Autistic Self-Advocacy Network:

On July 10th, the federal government’s Office of Autism Research Coordination (OARC) released a new report analyzing the distribution of autism research dollars in 2010. This report – entitled the IACC ASD Research Portfolio – is an annual responsibility of the federal government under Public Law 112-32. At first glance, the report shows significant steps forward on one of the key priorities of the Autistic and autism communities: the percentage of research funding going towards services research: OARC reports 16% of the autism research agenda funding this priority, up from 3% in 2009. However, further scrutiny reveals that rather than an actual increase in the percentage of funding allocated to services research, OARC instead chose to re-classify existing training programs as “research” to give the impression of progress. Instead of getting more funding for services-research, we’ve just gotten creative accounting, re-classifying practitioner training programs as research activities.

Also see coverage at Left Brain/Right Brain: here, here, and here.