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.

Autism Speaks Urges ABLE Action

From Autism Speaks:

Congress leaves Friday for its summer recess, yet many members--particularly in the Senate--have yet to sign on to the ABLE bill which would give families raising kids with disabilities the chance to save tax-free for their future. In fact, if you live in one of the white states, neither of your two Senators has yet to co-sponsor ABLE, the Achieving a Better Life Experience Act. If you live in a yellow state, one of your Senators still needs to sign on in support. Only five states --in green--have the support of both Senators. In the House of Representatives, more than half the members have yet to sign on in support. Are you going to allow your members of Congress to leave town without signing on to ABLE? Urge them to cosponsor S.1872 if they serve in the Senate and HR.3423 if they serve in the House.

Voting Rights

Minnesota is grappling with the issue of voting rights for disabled people under guardianships. The Minneapolis Star-Tribune reports:

"I want to vote," said Dave McMahan, a 61-year-old military veteran with mental illness who lives in a Minneapolis group home and has his affairs controlled by a legal guardian. "I've been through sweat and blood to vote. I don't want my rights taken away, because I fought for my rights here in the United States and expect to keep them that way."

Equally passionate is Ron Kaus of Duluth, an activist and plaintiff in a federal lawsuit that has raised the issue. Citing allegations in Crow Wing County in 2010, Kaus worries that disabled people have been hauled to the polls and told whom to vote for, which would be a crime. "It's one of the sickest form of exploitation, political abuse," he said.

At stake are the voting rights of an estimated 22,000 people whose affairs are controlled in varying degrees under guardianships. Under current law, they retain the right to vote unless a judge takes it away. That presumption, and its apparent conflict with the state Constitution, has been questioned in the lawsuit and in debate at the Legislature earlier this year.

Adults who have court-appointed guardians to handle their affairs retain the right to vote unless a judge intercedes. Many under guardianship were profoundly disabled children who were placed under guardianship when they became adults so someone, often a parent, would have the legal authority to make medical and life decisions for them. Others are frail seniors without family, or those with severe, chronic mental illness.

See here for a brief summary of state laws.