Reversing TRICARE Rate Cuts

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  As many posts have discussed, the challenges are especially great for military families.

Tom Philpott reports at The Military Advantage Blog:

Language in both the House and Senate versions of the defense bill orders the Department of Defense to restore TRICARE reimbursement rates for applied behavior analysis (ABA) therapy for children with autism spectrum disorder to the higher levels paid until last April.

The rate cuts were significant enough that some groups of ABA providers stopped caring for military children, telling affected families they can’t properly pay staff or sustain their businesses with such low fees.
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With the new rates TRICARE reimbursements fell sharply, but TRICARE capped the cut to no more than 15 percent the first year. Complaints from families and providers spurred the armed services committees to insert rollback language to their defense bills but then delayed final passage.

Despite the complaints, [Navy Capt. Edward Simmer, deputy director of the TRICARE Health Plan] said TRICARE has more than 28,000 ABA providers in its networks, more than two for every one of 13,000 military children receiving or seeking autism therapy.

“We’ve actually added providers under the new rates,” he said. “And everywhere we did have a provider drop because of the rates, we were able to place those patients with other very well qualified providers…So by and large we don’t believe the rates have had any significant impact on access.”

[Military autism advocate Karen] Driscoll said she the provider lists TRICARE touts are unreliable. She said she queried two clients, both of them large, multi-state ABA providers, to compare employee lists to what TRICARE posted. The results showed only 17 percent of providers listed for one company and 28 percent for the other were serving TRICARE beneficiaries. [emphasis added]

Vaccines, Autism, and the Amish: Snopes Weighs In

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.   Antivaccine activists claim that the Amish do not vaccinate, and that there is no autism among them.  At Snopes, Alex Kasprak debunks both assumptions:

A 2011 study published in the journal Pediatrics surveyed 1,000 Amish parents about their vaccination habits. Of the 359 people who responded:

68% stated that all of their children had received at least 1 immunization, and 17% reported that some of their children had received at least 1 immunization.

These rates are lower than the national average, but to claim that the Amish do not vaccinate their children is false, as a majority of them do vaccinate to some degree.

Furthermore, researchers have documented many cases of autism amongst the Amish populations. Researchers from the University of Miami and Vanderbilt University interviewed 1,899 Amish children from two prominent Amish communities in Holmes County, Ohio and Elkhart-Lagrange County, Indiana. In a 2010 presentation to the International Society of Autism Research, they stated:

Preliminary data have identified the presence of ASD in the Amish community at a rate of approximately 1 in 271 children using standard ASD screening and diagnostic tools although some modifications may be in order. Further studies are underway to address the cultural norms and customs that may be playing a role in the reporting style of caregivers, as observed by the ADI. Accurate determination of the ASD phenotype in the Amish is a first step in the design of genetic studies of ASD in this population.

A Great Program: Exceptional Minds

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.

One such program is Exceptional Minds, a visual effects animation studio in Hollywood.

Marsha James reports at Voice of America:

Exceptional Minds is a full-time, 3-year vocational program where students learn to do visual effects, animation and title work specifically for the entertainment industry.

"The program would teach them not only the technical skills that they needed but the work readiness skills that they needed in order to get a job," said Ernie Merlan, EM program director. "So we focus on how they look and what their attitude is and organizing themselves and problem solving on their own and then work place conflict, which is something I think we all have but learning how to deal with it is a little tough."

Exceptional Minds also has part time and summer programs for younger children.
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It is costly to run a program like Exceptional Minds. Most families can only pay partial tuition. The program provides financial assistance to every student at the school.

Some students find jobs immediately after finishing the three year Exceptional Minds program. Other students work first at the Exceptional Minds studio. There, students gain connections to Hollywood’s major entertainment studios, like Marvel, Fox and Sony. They get to work on movies and television.

Ernie Merlan says the exacting, creative nature of animation seems to fit for some people with ASD. But, he hopes that Exceptional Minds can serve as a model program for teaching other vocations to those on the spectrum.

“Our dream is that we can show other people how to do what we’re doing. That they can in their own towns can figure out ways that these individuals can be useful to the town to the local industry and have them be a part of society.”

Link to Exceptional Minds here. 

Antivax People AWOL in CA Disability Battles

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.

Matt Carey writes at LeftBrain/RightBrain:

This past year we have been fighting a big battle here in California. We were fighting to restore some of the services funding we’ve lost over the preceding years. We were trying to get a 10% increase in services funding, which wouldn’t make up for what we’ve lost over the years, but would be a big step forward.

This was a long fight, and one that we didn’t initially win. Even though we fought hard from the start, the budget did not include any increase for disability services. We could have used some help, more voices from the advocacy community. Even though we lost at first, advocates kept trying and finally got a 7.5% increase. And that’s a victory. The Arc of California/United Cerebral Palsy were working hard organizing the effort, organizing call in campaigns, fax campaigns and in-person activism in the state capital. Other groups, such as the Autistic Self Advocacy Network were also helping, as were others.

But here’s the thing: you wouldn’t know any of that if you were only following the vaccines-cause-autism focused groups and people.
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Yes, instead of doing anything, anything at all, to work towards restoring lost services funding, they were lobbying against a vaccine bill. Not “lobbying against a vaccine bill and working for a restoration of services.” Just lobbying against a vaccine bill.

Carey goes on to name names.

A number of posts on this blog have discussed the antivax effort in California.

Epilepsy and ASD

In The Politics of Autism, I discuss dangers facing autistic people, including co-occurring conditions such as epilepsy.

At The Journal of Autism and Developmental Disorders, "Shiny Thomas, Mary E. Hovinga, Dheeraj Rai and Brian K. Lee have an article title "Brief Report: Prevalence of Co-occurring Epilepsy and Autism Spectrum Disorder: The U.S. National Survey of Children’s Health 2011–2012."

The abstract:

Epilepsy is reported to co-occur in individuals with autism spectrum disorder (ASD). Previous studies across the world have found prevalence estimates ranging from 4 to 38 %. We examined parent-reported prevalence of co-occurring epilepsy and ASD in the most recent U.S. National Survey of Children’s Health, 2011–2012. All analyses accounted for survey weights to account for the complex sampling design. In the overall analytic sample of 85,248 children ages 2–17, there were 1604 children with ASD (prevalence of 1.8 %) and 1083 children with epilepsy (prevalence of 1.2 %). Epilepsy was reported to co-occur in 8.6 % of ASD cases. In children with ASD, the co-occurrence of epilepsy was associated with increasing child age, female gender, intellectual disability, speech problems and lower socioeconomic status.

From the article:

Finally, epilepsy was more common in ASD children with lower family income, consistent with what has been observed in the general, non-ASD population. The relationship between low socioeconomic status and incidence of epilepsy and ASD is not well-understood. However, low socioeconomic status is associated with adverse perinatal outcomes such as intrauterine growth restriction or preterm birth that may increase risk of epilepsy or neurodevelopmental disorders such as ASD. The complex relationship between socioeconomic status, epilepsy, and ASD deserve further investigation.

Stopping Transplant Discrimination

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities. 

A release from Rep. Mike Honda (R-CA):

Congressman Mike Honda and Congresswoman Jaime Herrera Beutler have called on the Department of Health and Human Services’ Office of Civil Rights (HHS OCR) to issue guidance on organ transplant discrimination with regards to persons with disabilities. People with an intellectual and/or developmental disability are too often denied life-saving organ transplants for no reason other than their disability.

A 2008 survey of 88 transplant centers found that 85 percent of pediatric transplant centers consider neurodevelopmental status as a factor in their determinations of transplant eligibility at least some of the time. About 71 percent of heart programs surveyed also applied neurodevelopmental status in determining transplant eligibility.

In the mid-90s, 34-year-old Sandra Jensen was denied a heart-lung transplant because of her Down’s Syndrome. In handing down what was effectively a death sentence, hospital officials advised her, “we do not feel that patients with Down syndrome are appropriate candidates for heart-lung transplantation.” She fought the decision which eventually led to California being the first state to pass legislation prohibiting such discrimination and that precedent has since been followed by several other states.

More recently, the parents of Amelia Rivera, a New Jersey girl who was refused a kidney because of her mental disabilities, successfully challenged that decision with the help of an online petition. That case inspired to adopt “Amelia’s Law, similar legislation that banned such discrimination.

However, Reps. Honda and Herrera Beutler have argued for enforcement of federal law that should already cover this issue.

“This is discrimination that has life or death consequences,” Rep. Honda said. “No one should be denied their right to life simply because of an intellectual or a development disability. Such discrimination directly violates the Americans with Disabilities Act and does not abide the American values of fairness and inclusion that we hold so dear as Americans, for all our communities.”

“It’s unacceptable that someone’s intellectual or developmental disability has been a hurdle to them receiving this lifesaving care,” said Congresswoman Jaime Herrera Beutler. “My colleagues and I believe the Department of Health and Human Services must issue clear guidance protecting people with neurological disabilities – in Southwest Washington and around the country – from discrimination in organ transplants.”

"People with disabilities deserve equitable access to all kinds of health care, including organ transplants,” said Ari Ne’eman, President and co-founder of the Autistic Self Advocacy Network. “We're grateful to Reps. Honda and Herrera Beutler for leading on this issue, and hope that HHS OCR will act swiftly to re-affirm the ADA rights of people with disabilities seeking organ transplantation."

A copy of the letter can be found here.

Juking the Stats in Alice, Texas

In The Politics of Autism, I discuss the educational and civil rights of people with autism and other disabilities. 

At The Houston Chronicle, Brian M. Rosenthal reports on Willie Ruiz, an Alice, Texas, school official whose son is on the spectrum.

Marco was diagnosed in 2012, in second grade. With the help of his dad, who had been promoted to operations director, Marco got services. They helped him stay afloat, though his handwriting remained basically illegible.

By 2012, Alice had lowered its special ed rate to 9.4 percent, but it was still above the state target.

Last May, when Marco was re-evaluated and found to no longer need services, Willie disagreed.

"I know it's about numbers. I've worked here for 27 years, and I know what's going on," he said during the meeting, according to a recording.

The parents are fighting. They've hired an advocate, and they are getting an independent evaluation.

The most recent data, which is from 2015, showed that 8 percent of Alice ISD kids were in special education. It was the first time it fell below 8.5 percent.

Comorbidity

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

At Autism, Rini Vohra, Suresh Madhavan, and Usha Sambamoorthi have an article title "Comorbidity Prevalence, Healthcare Utilization, and Expenditures of Medicaid Enrolled Adults with Autism Spectrum Disorders."  Using Medicaid data, they find:

Adults with autism spectrum disorders had significantly higher rates of psychiatric comorbidity (81%), epilepsy (22%), infections (22%), skin disorders (21%), and hearing impairments (18%). Adults with autism spectrum disorders had higher mean annual outpatient office visits (32ASD vs 8noASD) and prescription drug use claims (51ASD vs 24noASD) as well as higher mean annual outpatient office visits (US$4375ASD vs US$824noASD), emergency room (US$15,929ASD vs US$2598noASD), prescription drug use (US$6067ASD vs US$3144noASD), and total expenditures (US$13,700ASD vs US$8560noASD). The presence of a psychiatric and a non-psychiatric comorbidity among adults with autism spectrum disorders increased the annual total expenditures by US$4952 and US$5084, respectively.

From the study:

From a policy perspective, our study showed that adults with ASD represent a high needs group within the Medicaid population. Medicaid coverage provides substantial number of services for adults with ASD which also transforms into extremely high costs. With the recent efforts to reduce long term healthcare costs and still maintain quality care, understanding the pattern of healthcare utilization and factors influencing the high services use among adults with ASD draws attention to the need for better coordinated care and/or processes to improve communication and treatment experiences of this group.

Senators Back Ban on Shock

In The Politics of Autism, I write:

For those who remain at larger residential institutions, the horrors of yesteryear have generally ended. In 2012, however, a ten-year-old video surfaced, showing disturbing image of an electric shock device at the Judge Rotenberg Center in Canton Massachusetts. Staffers tied one student to a restraint board and shocked him 31 times over seven hours, ignoring his screamed pleas to stop. The Rotenberg Center is the only one in the nation that admits to using electric shocks on people with developmental disabilities, including autism. Center officials said that they had stopped using restraint boards but insisted that shocks were necessary in extreme cases to prevent officials insist the shock program is a last resort that prevents people with severe disorders from hurting themselves or others. Though a majority of the FDA’s Neurological Devices Panel said that such devises pose “an unreasonable and substantial risk of illness or injury,” the agency had not banned them as of 2014.

From Senator Chris Murphy (D-CT):

In a letter to Food and Drug Administration (FDA) Commissioner Robert M. Califf, U.S. Senator Chris Murphy (D-Conn.) led U.S. Senators Richard Blumenthal (D-Conn.), Cory Booker (D-N.J.), Bob Casey (D-Pa.), Al Franken (D-Minn.), and Tammy Baldwin (D-Wisc.) in applauding the FDA for proposing a rule to ban electrical stimulation devices (ESDs) and urging the FDA to quickly implement the ban. The use of ESDs, particularly on children, has been associated with depression, anxiety, learned helplessness, worsening of self-injurious behaviors, symptoms of PTSD, pain, and burns. Despite research confirming the substantial health risks of ESDs, the devices are still legal in the United States and continue to be used as behavioral therapy at the Judge Rotenberg Educational Center, a facility in Massachusetts. In their letter to the FDA, the senators point out that there have been significant scientific, therapeutic, and pharmacologic advances that provide safer, more effective behavioral therapy solutions.

“The use of these electric shock devices as aversive therapy for individuals with developmental disabilities is inhumane, especially since many of these individuals have difficulty communicating and alternative effective treatment options are available,” wrote the senators. “Put simply, it is outrageous that this practice is allowed in the United States for this vulnerable population and it should be stopped immediately. As such, we urge you to finalize the proposed rule as quickly as possible.”
The full text of the letter is available here

Trump Supporter: "No Vaccines"

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on disability issues more generally.'

At Mediaite, Ken Meyer reports that a Trump supporter gave an odd reason for backing him: “Veterans care. No vaccines…”

It is likely that Judy is referencing a strange position Trump has taken in the past about how vaccinations are connected to autism. Trump has defended his old stance during the 2016 election, even though nowalmost the entire medical community has concluded that its not just unproven but simply untrue.

Improvement in Graduation Rates

In The Politics of Autism, I write about education and the Individuals with Disabilities Education Act.

From the US Department of Education:

The national graduation rate for public high school students rose to a new high of 83.2 percent in 2014-15, according to data released today by the National Center for Education Statistics. This adjusted cohort graduation rate (ACGR) measures the percentage of students who graduate with a regular high school diploma within four years of starting 9th grade. The ACGR has risen by about four percentage points since the data were first collected in 2010-11.

The data released today show that between 2010-11 and 2014-15, graduation rates increased for all reported groups of students, including all racial and ethnic subgroups, low-income students, English learners, and students with disabilities. However, graduation rate gaps persist among the racial and ethnic subgroups.
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From 2010-11 to 2014-15, the ACGR has increased 6 percentage points to 76.1 percent for low-income students; has increased 8 percentage points to 65.1 percent for English Learners; and has increased 6 percentage points to 64.6 percent for students with disabilities.

To view the full data, please visit http://nces.ed.gov/ccd/tables/ACGR_RE_and_characteristics_2014-15.asp.

From the White House:
 

Year-by-Year Data: National Center for Education Statistics

More on Trump and Antivax

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on disability issues more generally.

The editors of Scientific American write:

One of the major-party presidential candidates has had plenty to say during this year's campaign. But almost none of the words from Donald J. Trump have been about the importance of science and science literacy to the nation's economic growth, security and international prestige—as well as to the health and well-being of the American people and the future of the planet itself. Trump has, however, made statements about science over the years, many of them in the form of tweets. They betray his beliefs about scientific issues, so we are reprinting a selection of them here. We have not fact-checked them.

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THE AUTISM-VACCINE CONNECTION

I've seen people where they have a perfectly healthy child, and they go for the vaccinations, and a month later the child is no longer healthy. [SOURCE]

Autism rates through the roof—why doesn't the Obama administration do something about doctor-inflicted autism. We lose nothing to try. [SOURCE]

Healthy young child goes to doctor, gets pumped with massive shot of many vaccines, doesn't feel good and changes—AUTISM. Many such cases! [SOURCE]

Disability and the 2016 Election

In The Politics of Autism, I discuss the issue's role in presidential campaigns. As I explain in the book, Hillary Clinton has a long history with the issue. In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism. He also has a bad record on disability issues more generally.

Steve Flamisch reports at Rutgers:

On Nov. 8, 35.4 million people with disabilities will be eligible to vote, representing about one-sixth of the electorate.

When Donald Trump mocked a disabled New York Times reporter last year, he ignited a firestorm in the disability community. Hillary Clinton responded with a television ad featuring a well-known disability rights advocate, and she recently introduced a plan to increase job opportunities for people with disabilities. Rutgers Today asked Rutgers School of Management and Labor Relations Professors Douglas Kruse and Lisa Schur about their latest research on the political participation of people with disabilities and how the candidates' actions could influence voter turnout.

Have you ever seen a presidential election with so much focus on the disability community?

Schur: People with disabilities are definitely receiving more attention in this election. Disability has long been a bipartisan issue in the U.S., as shown by the strong support from both Republicans and Democrats for the 1990 Americans with Disabilities Act and the 2008 ADA Amendments Act, which expanded the definition of disability to cover more people. So disability has not been a significant partisan issue in past elections, but that changed this year with the controversy created by Trump's behavior and the focus by Clinton on policies to expand employment for people with disabilities.
You've analyzed mountains of federal data to project the total number of eligible voters with disabilities, nationwide and on a state-by-state basis. What are your significant findings?

Kruse: Based on Census data, we project that 35.4 million people with disabilities will be eligible to vote on Nov. 8, representing about one-sixth of the electorate. Perhaps more importantly, we project 62.7 million eligible voters who either have disabilities or household members with disabilities, representing over one-fourth of the electorate. This is important because family members of people with disabilities are often very motivated to take action on disability issues, so disability can motivate the whole family. We find large numbers of people with disabilities in every age, racial, and ethnic group. In addition, there are large numbers of people with disabilities in every state, ranging from 12.7 percent of the electorate in Nebraska to 24.1 percent in West Virginia.

What kinds of disabilities are taken into account?

Schur: We use the Census Bureau's six questions that identify mobility impairments, cognitive impairments, hearing impairments, visual impairments, and general activity limitations inside and outside the home.

What kinds of obstacles do people with disabilities encounter when they go to vote and how does that affect turnout?

Kruse: Our 2012 national post-election survey found that 30 percent of voters with disabilities reported some type of difficulty in voting at a polling place, compared to 8 percent of voters without disabilities. The most common problems reported were difficulty in reading or seeing the ballot, or understanding how to vote or use voting equipment. Some of these problems can be avoided by voting by mail, and people with disabilities are more likely than those without disabilities to vote by mail, but a majority of voters both with and without disabilities say they prefer to vote at a polling place.
Do you believe turnout among people with disabilities will be higher this year because of the candidates' actions?

Schur: Probably yes, because of the way disability has become an issue in this campaign, along with the strong efforts by the disability community to increase turnout.