Discussion of Scarborough on Autism Live

On CARD's "Autism Live," Shannon Penrod talks about Scarborough, bestowing on him "The Autism Ignorance Award."

 

Scarborough's Harm

Reaction continues to Joe Scarborough's suggestion that the Colorado killer is autistic. Tommy Christopher writes at Mediaite:

Last week, Joe Scarborough answered pleas and petitions from autism advocates that he correct the false statements he made about autism by telling them that they had all simply missed the point. According to autism advocate Karla Fisher (who is on the autism spectrum, as well), members of the football team she manages got Scarborough’s point, loud and clear. Fisher, who is the General Manager of the Portland Fighting Fillies professional women’s football team, writes on her Facebook page:

This weekend I hosted my football team at my farm for a camp out. They asked me questions about my autism work and I told them that autistic people grow up to be lawyers and doctors and teachers and janitors and Moms and…. I was uninterrupted by one of the girls who said, “And mass murderers”. I asked her if she was kidding. She was not. EVERYONE thought Holmes is autistic and that link was connected very clearly in that room.

This is real life folks and real bad for all of us.

Limits of the Utah Approach

The Salt Lake Tribune reports on the limits of new Utah legislation, using ASD student Logan Hilton as a peg:

Utah’s two-year autism treatment pilot, which launched this year, is intended to help kids like Logan. His mom works for the Department of Corrections, and as the child of a public employee, he can now receive up to $30,000 worth of behavioral treatment each year.

The problem is that families covered by the Public Employees Health Program still need to contribute $6,000 annually to take advantage of the maximum state benefit.

"I’m grateful for it, but at the same time it’s not enough," said his mom, Michelle Hilton. "They haven’t made it affordable enough."

The Eagle Mountain mom believes more families would have participated if the requirements — paying 20 percent of the cost, and open only to children from age 2 to 6 — had been more flexible.

Only 25 children are signed up for the 50 autism pilot slots in the PEHP portion.

"I think because of that age limit we don’t capture all of the autistic kids in our population," said Toan Lam, the PEHP medical director.

Scarborough Petition

From Radio & Television Business Report:

On his 7/23 MSNBC show “Morning Joe,” Joe Scarborough said upon hearing about the theater shooting in Aurora, Colorado, he immediately knew the shooter must be “on the autism scale.” In response, a petition on Change.org was launched, asking Scarborough to retract his statement and apologize. 

The petition (www.change.org/morningjoe ) was launched by Rachel Cohen-Rottenberg of Brattleboro, Vermont, after she heard Scarborough’s statement. Rachel had this to say about starting her petition: 

“I’m 54. I’m a wife, mom, writer, graduate student, and disability rights activist. I’m on the autism spectrum. I started the petition because I am concerned about the perpetuation of the stereotype that people on the autism spectrum are incapable of empathy, human connection, or ethical behavior. Joe Scarborough owes an apology to our community and his viewers because his statement just isn’t accurate.”

Cohen-Rottenberg tells RBR-TVBR the petition now has over 10,000 signatures and continues to grow.

Self-Insurance Is Exempt from State Autism Mandates

In Morgantown, WV, the Dominion-Post reports on a mandate loophole that leads to inequality:

While the new autism insurance law took effect in June, many employees and their families still aren't covered -- including those at WVU Hospitals (WVUH).

"Since WVU Healthcare's WVU Hospitals is a private employer, our health insurance plan is selfinsured and we are exempt from the autism legislation," said Charlotte Bennett, vice president of Human Resources for WVU Healthcare.

This means that nurses and other hospital staff aren't covered. But doctors are -- they work for WVU, a public university, and are insured by the state Public Employees Insurance Agency.

The self-insured loophole is the result of ERISA, which preempts state regulation of self-insured plans.

The US Department of Labor reports:

The Form 5500 data show that slightly more than 50,000 health plans filed a Form 5500 for 2009, an increase of almost 7 percent from the approximately 47,000 health plans that filed a Form 5500 for 2008.4 Of health plans filing a 2009 Form 5500, about 14,800 were self-insured and approximately 6,300 mixed self-insurance with insurance (“mixed-insured”). Self-insured plans covered approximately 24 million participants in 2009 and held assets totaling about $38 billion. In 2009 there were nearly 26 million participants covered by mixed-insured group health plans; these mixed-insured group health plans held more than $81 billion in assets. The table below summarizes aggregate statistics for self-insured and mixed-insured health plans filing a Form 5500 for 2008 and for 2009.

Indiana Voucher Program

The Indianapolis Star reports on Indiana's voucher program and its effect on one Chakotay Parks, who attends the Independence Academy of Indiana, a small private school that specializes in educating HFA students.

Indiana's voucher program allows parents to receive thousands of dollars that can be applied toward tuition at private schools that participate in the program. The amount of aid is based on the per-pupil funding the state sets for a student who otherwise would attend public school in his or her local district, so it doesn't necessarily cover all of the private school tuition.
...

The Parks family started looking for a new school two years ago for Chakotay, who is somewhere in the middle of the autism spectrum. Socially, he's about two years behind but is learning well.

Three to four months into the search, they found Independence Academy.
"It was number one on our Christmas list," said Parks, whose wife had cancer and died in January.

Parks said he and his wife always figured a special needs school would join the program at some point, and it was his wife who pestered state officials, looking for information.

She called, emailed and showed up at the Statehouse so often that Indiana Department of Education workers remembered to reach out to her family once a special education school applied for the program.

Lisa Roesler, director of Independence Academy, understands the benefit to families such as the Parkses of her school and other so-called niche schools accepting vouchers.

"Different environments work for different students," she said, "and the voucher program provides more possibilities to find a program that more specifically meets your child's needs, whatever those are."

Vaccinations in Arkansas

AP reports:

Before 2003, only a few hundred Arkansas schoolchildren did not receive standard childhood vaccinations due to health conditions or religious beliefs.

But once legislators changed the law and allowed parents to cite a "philosophical" objection, the rate of students forgoing shots has been rising, and health officials say the result is that people are unnecessarily contracting — and sometimes dying — from diseases ranging from whooping cough to the flu.

Dr. Dirk Haselow, chief of immunizations at the Arkansas Health Department, said the number of medical and religious exemptions has fallen slightly since 2003, but there was a marked increase in the philosophical exemption.
...
At present, there is a large outbreak of whooping cough in the Pacific Northwest. Whooping cough is particularly dangerous for infants, whose airways can be closed by swelling associated with the infection. During an outbreak in California last year, 10 infants died.

And there are occasional cases of measles, a disease that had been almost wiped out in the U.S. Haselow said measles' recurrence parallels the rise in people going unvaccinated, and the main reason is "bad information" that links immunizations with autism.

"There was ... some bad research that was in the press years ago that has been retracted. Many parents have held onto the misconception that (the measles, mumps and rubella vaccine) causes autism. This is a very hard opinion to change," he said.

TRICARE Ruling

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

Federal District Judge Reggie Walton today ruled that the Department of Defense and its military insurance arm, Tri-Care acted arbitrarily and capriciously in denying applied behavior analysis therapy to military dependents with autism spectrum disorder. The ruling was issued in the case of Berge v United States, No. 10-0373. This ruling capped the military families' three year battle with the Department of Defense and TriCare. The Court granted Summary Judgment to the families, ordering that the government cover ABA therapy for thousands of autistic children of military dependents. The government had taken the position that the therapy was "unproven." Judge Reggie Walton held that this conclusion was arbitrary and capricious and ordered the government to provide the therapy immediately. The 67 page ruling is expected to benefit 20,000 children with autism spectrum disorder.

Also see Autism Speaks on the ruling. 

Census Data on Disability

The Census Bureau has a new report:

The report, Americans with Disabilities: 2010, presents estimates of disability status and type and is the first such report with analysis since the Census Bureau published statistics in a similar report about the 2005 population of people with disabilities. According to the report, the total number of people with a disability increased by 2.2 million over the period, but the percentage remained statistically unchanged. Both the number and percentage with a severe disability rose, however. Likewise, the number and percentage needing assistance also both increased.
...
The statistics come from the Survey of Income and Program Participation, which contains supplemental questions on whether respondents had difficulty performing a specific set of functional and participatory activities. For many activities, if a respondent reported difficulty, a follow-up question was asked to determine the severity of the limitation, hence, the distinction between a “severe” and “nonsevere” disability. The data were collected from May through August 2010. Disability statistics from this survey are used by agencies — such as the Social Security Administration, Centers for Medicare and Medicaid Services, and the Administration on Aging — to assist with program planning and management.

The report shows that 41 percent of those age 21 to 64 with any disability were employed, compared with 79 percent of those with no disability. Along with the lower likelihood of having a job came the higher likelihood of experiencing persistent poverty; that is, continuous poverty over a 24-month period. Among people age 15 to 64 with severe disabilities, 10.8 percent experienced persistent poverty; the same was true for 4.9 percent of those with a nonsevere disability and 3.8 percent of those with no disability.

What about autism?  The report says: "Roughly 1.2 million adults (0.5 percent) had an intellectual disability and 944,000 (0.4 percent)  had other developmental disabilities, like cerebral palsy or autism."  Among people under 15, Table A-4 of the report says, 1.5 percent have a developmental disability.  Needless to say, the big question is whether this difference reflects a true increase in prevalence or different rates in reporting autism and other developmental disabilities.

See another Census report on school-age children with disabilities.

For a recent discussion of prevalence, see Emily Willingham at Discover.

TV Interview About Scarborough's Comments

Mike Elk, of In These Times and  Ari Ne'eman of the Autistic Self Advocacy Network join RT's Thom Hartmann to talk about  Joe Scarborough's comments.

Scarborough and Autism: Day Three

Tommy Christopher wrote yesterday at Mediaite:

Although he failed to mention the controversy during Tuesday morning’s episode of Morning Joe, he did release a statement this afternoon. Here’s what Joe Scarborough had to say, in an email statement to Mediaite:

During a debate regarding the recent Colorado shootings, I suggested that the Aurora tragedy should make Americans focus more on mental health in this country. I also stated that my own experiences raising a son with Aspergers made me keenly aware of how important strong support systems are to those who might otherwise be isolated.

The growing Autism epidemic is a tremendous burden for children, parents and loved ones to endure. My call for increased funding and awareness for Autism and other mental health conditions was meant to support the efforts of those who work every day to improve the lives of Americans impacted. Those suggesting that I was linking all violent behavior to Autism missed my larger point and overlooked the fact that I have a wonderful, loving son with Aspergers. Perhaps I could have made my point more eloquently.

I look forward to continuing my work with wonderful organizations like Autism Speaks to provide badly needed support to millions of Americans who struggle with Autism every day.

Scarborough’s statement is unlikely to mollify those incensed by his Monday remarks, which don’t really match up well with his attempt to recast them. Here’s what Scarborough said yesterday:

“You have these people that are somewhere, I believe, probably on the autism scale, I don’t know if that’s the case here, but it happens more often than not, people that can walk around in society, that can function on college campuses, can even excel in college campuses, but are socially disconnected. I have a son who has Asperger’s who is loved by everyone in his family and who is wonderful, but it is for those that may not have a loving family and a support group and may be a bit further along on the autism spectrum, an extraordinarily frustrating, terrible challenge day in and day out. and so, I do think, again, I don’t know the specifics about this young man, but we see too many shooters in these type of tragedies bearing the same characteristics mentally.”

Calling for increased awareness for autism is all well and good, unless what you’re making people aware of is the false notion that “these people” are “somewhere on the autism scale,” “more often than not.” That’s not “ineloquence,” it’s gross irresponsibility, and the suggestion that the people who heard him correctly “missed (his) larger point” is just insulting.

 The Hollywood Reporter adds some detail:

Scarborough has a son with Aspergers, and has been involved with charities benefiting the disease. In 2005, he hosted Robert Kennedy Jr. in a segment in which they discussed the disease, and the largely debunked notion that childhood vaccines could have caused an uptick in the number of kids with autism.

Reactions to Scarborough

Yesterday's post described Joe Scarborough's reckless speculation that the Aurora shooter is on the spectrum.  He has managed to unite the community -- against that speculation.

There is an online petition to urge Scarborough to retract his comments.  Here is a small sampling of other reactions:

The Autistic Self-Advocacy Network:

“Mr. Scarborough’s remarks suggesting that James Holmes, the shooter behind the Aurora movie theater killings, was an Autistic American are as perplexing as they are without evidence. No information on Mr. Holmes has suggested that he displays the diagnostic characteristics of autism and no evidence exists tying autism with violent behavior or threats to public safety. As a parent, Mr. Scarborough should know better than to perpetrate these types of unfortunate stereotypes. Autistic Americans are an integral part of our society and live, work and attend school alongside our non-Autistic peers. There exists no evidence linking autism with violent behavior. By spreading ill-founded and unsupported claims linking autism with violence, Mr. Scarborough does our community real harm. We urge him to reconsider and for him and MSNBC to retract his remarks.”

The International Coalition for Autism and All Abilities:

The recent comments made by Joe Scarborough were a sad yet strong illustration of the prevailing ignorance and bigotry in our culture regarding disabilities, specifically autism. The ICAA has reached out to Mr. Scarborough through our ICAA Radio program, offering a unique opportunity to issue an apology, retraction or other statement to our community. Mr. Scarborough seems to be an otherwise thoughtful individual, who has been awarded authority and opportunity to voice his opinions to millions on a global scale. We hope that Mr. Scarborough will become better educated about autism, and gain some perspective. The marginalization of autistic people, and people with other disabilities, is equally outrageous to the marginalization of people with racial or other differences. Mr. Scarborough and others in the media would do well to join us in our efforts to make the world a better place, rather than continue as a part of the problem.

Jess Wilson at A Diary of a Mom:

Autistic people are not any more nor any less dangerous than their neurotypical peers.
Jumping to conclusions which insinuate that they are can be lethal.
Autism is not dangerous. But words can be. Please, Joe, think before you speak. 

Tommy Christopher at Mediaite:

In response to an email inquiry, Mike Elk, a staff writer for In These Times who recently wrote a beautiful essay in which he “came out” publicly as a person with Asperger’s Syndrome, denounced Scarborough’s remarks, and demanded a retraction:

As both a person with Asperger’s Syndrome, as well a journalist, MSNBC must issue an immediate retraction of Joe Scarborough’s unfounded statements accusing the shooter of having autism and linking autism to violence. There is absolutely no evidence that the Colorado shooter has autism, nor is there a single scientific study that links autism to violent outbursts such as the despicable acts of terrorism that occurred last Friday in Aurora, Colorado. As someone who was bullied, beaten, and often a loner as child, I never once though about taking out violent rage against those who bullied me. Instead, I poured my sense of hurt into reporting on workers who were similarly being bullied by big corporations.

Radical Neurodivergence Speaking:

It is journalistic irresponsibility to do this, and it affects real people. We are the ones who have to live with the stigma you perpetuate. I am at risk of being killed because you tell the population that I am dangerous-despite that I am one of the 97% of developmentally disabled people who has been the victim of non mentally ill, non disabled violent perpetrators. You make the world more dangerous for me every time you do this. You make it more dangerous for my entire community.

Reckless Speculation

Dylan Byers reports at Politico about some reckless speculation by MSNBC's Joe Scarborough:

"You don't want to generalize," MSNBC's Joe Scarborough said today before saying that James Holmes, the suspected Aurora, Colo., shooter, was "on the autism scale."

"As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society -- it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale," said Scarborough, whose son has Asperger's syndrome. "I don't know if that's the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses -- they can even excel on college campuses -- but are socially disconnected."

No, we do not know whether the suspect is on the spectrum, and until there is some evidence, it is foolish even to mention the topic.  Such comments may lead the general public to connect autism with violent behavior.

This is not the first such incident.  Five years ago, after the massacre at Virginia Tech, I wrote at the Political Mavens blog:

News reports have suggested that the Virginia Tech shooter was autistic.Reporters should be cautious about such speculation. 

First, without proper context, such stories may lead readers to the false generalization that autistic people are violent.

Second, there is reason to doubt that Cho was autistic in the first place. He learned English as a second language — and learned it well enough to major in the subject in college. Autistic people usually have great difficulty with speech and language. They can often overcome this problem, but it takes years of therapy.If news accounts are accurate, Cho had no such therapy.

The speculation stems from accounts of Cho’s coldness. That’s stereotyping. Many autistic people are cheerful and affectionate. Other disorders could account for his behavior.

A few months later, I followed up:

A few months ago in this space, I cautioned against speculation that Virginia Tech killer Seung Hui Cho was autistic.  Indeed, it now turns out that he had an entirely different problem, a social anxiety disorder involving “selective mutism.”  Clinical psychologist Robert Schum told The Washington Post: ““He was not autistic.”

Why dwell on the point?  Autistic people have enough problems without media speculation linking them to mass murder. Trust me on that.

First Responders, Parents, and People on the Spectrum

As previous posts have noted, people on the spectrum sometimes have unhappy interactions with law enforcement. In a report on the training of first responders, the Austin American-Statesman offers an anecdote suggesting that parents also have difficulties.

Dennis Debbaudt's son was fussing on the floor of a toy store. People were staring. Debbaudt carried him out crying.

But as he buckled him in to his car seat, Debbaudt was surrounded by mall security officers. They were responding to a report that someone in the store had made about a possible child abduction, and when they quizzed Debbaudt's son, the boy grew even more upset. He was autistic, and what little speaking skills he had were buried by tears.

Debbaudt didn't fault the shopper for alerting security, but the experience, which occurred years ago, piqued his interested in how law enforcement interacts with people who have autism. Now Debbaudt, an author and trainer of law enforcement officers, said he focuses on helping them learn how best to respond to people with autism.

Next month, he will lead a four-hour training class in San Marcos on autism recognition and response for law officers, other first responders and anyone else in the community who is interested.

The training is a statewide initiative of the Texas Autism Research and Resource Center, a project of the Texas Department of Aging and Disability Services, which is sponsoring the class, department spokeswoman Cecilia Cavuto said.

Suit Against Autism Speaks

Disability Scoop reports that the Simone Greggs, the mother of an ASD teen, is suing Autism Speaks:

In a complaint filed in the U.S. District Court for the District of Columbia earlier this month, Greggs said that she was supposed to start her new job as a walk events manager at Autism Speaks’ Washington, D.C. office in early May after successfully completing five different interviews, a pre-employment background check and a drug test.

But Greggs said everything changed after she asked her new employer if they would accommodate an alternate work schedule or allow her to work from home on Wednesdays when her son’s school let out early.

Greggs was told that such accommodation would not be possible. She then made other arrangements for her son, but was subsequently informed by Autism Speaks managers that they were “rescinding the employment offer because they did not want to make any accommodations for the care of her autistic child,” the court filing says.
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Balancing work with caregiving obligations is often a struggle for parents of those with autism. A 2009 study found that moms of children on the spectrum were interrupted at work one out of every four days compared to less than one in 10 days for other moms. Another study, published this spring, found that moms of children with autism earn an average of 56 percent less than parents of typically developing kids. Accordingly, several researchers have cited workplace flexibility as a top need for parents raising children with special needs.

Kristina Chew writes:

A Pediatrics study published in March found that we mothers of children on the autism spectrum earn less earn less. We earn 35% ($7189) less than the mothers of children with other health issues and 56% ($14, 755) less than mothers of children without health issues and disabilities.

I’ve been able to work full-time for most of my son Charlie‘s life because I’ve been a professor at a number of smaller colleges and universities where teaching has been my primary responsibility. I’ve been able to set up my work hours so I can see Charlie off to school, get home before the school bus arrives and drop everything when the school nurse or principal calls to say: “You need to pick him up now.” My husband Jim Fisher is also a professor and has flexible work others. Otherwise, I have no idea how we could take care of Charlie (we have no other caregivers for him). As Jim often says, “we have no margin for error.”

Taking care of Charlie has completely affected our careers. We can teach and work from home but are unable to travel to professional meetings and undertake extensive research that would involve visiting archives and distant libraries. I feel very lucky to have a job that allows for accommodating Charlie’s needs and love all the time we spend with him, but taking care of him has meant cutting corners in my academic scholarship and limiting certain kinds of professional advancement.

Certification in Virginia

A July 18 release from Autism Speaks:

Autism Speaks and the Virginia Autism Project (VAP) responded today to the Virginia Board of Medicine’s emergency regulations for certifying therapists who provide Applied Behavior Analysis (ABA) and removing the latest roadblock to Virginia families gaining access to the autism treatment in public schools, community programs, and at home.

“We are monitoring the situation in Virginia very closely and will act swiftly to correct any limitations that occur for families trying to access these insurance benefits,” said Judith Ursitti, Autism Speaks director of state government affairs.

Virginia enacted autism insurance reform in 2011 requiring ABA coverage for children through age 6, but it required ABA providers to obtain state certification even though no such process existed. A subsequent bill enacted this year directed the state Board of Medicine to establish a certification procedure after hearing recommendations from a working group that included ABA providers.

When the state Board of Medicine issued emergency regulations in late June, the proposal failed to include a number of the recommendations and raised concerns they could inadvertently prohibit students, teachers and therapists under supervision to provide services or even to get practical ABA training.

“We have expressed this concern, but we have been assured by the Board of Medicine and staff that our concerns are unfounded,” said VAP President Teresa Champion. “Based on assurances from the staff of the Board of Medicine, we are willing to allow the regulations to go forward and be implemented as soon as possible.”

In addition to the difficulties the regulations pose for schools, community programs, university programs and families with disabilities, VAP said it fears that the regulatory language will prevent insurance companies from covering ABA services provided by unlicensed, trained individuals who work under the supervision of a Board Certified Behavior Analyst (BCBA) or Board Certified assistant Behavior Analyst (BCaBA).

The small pool of BCBAs and BCaBAs in Virginia cannot personally provide therapy to all disabled Virginians in need, said Champion. As a result, many of Virginia’s families, schools, and community programs will have to choose between financial insolvency or watching a disabled loved one regress, she said.

Autism and Taxes

Special needs families may be able to claim a tax deduction for certain medical or dental expenses.  See IRS Form 502. (Also check out the proposed ABLE Act.)

Actually getting the deduction not always be quite so simple.

At The Huffington Post, Dafna Maor writes an open letter to the IRS:

I came into your office one winter afternoon pushing a stroller. My 2-year-old son was in it. He had been diagnosed with autism a couple of months earlier. I had to turn in his medical papers so I could get a tax deduction.

I waited in line. The clerks were sitting in booths, serving the citizens by turn.

When my number was called, I approached the booth, pushed the stroller in and tried to sit down in what little space was left. I explained my request and the clerk looked at my papers.
"What is this?" she pointed at the word ASD.

"Autism," I said quietly. The people waiting in line were about seven feet away from us.

 "Wait." She got up and called another clerk, perhaps her supervisor, to come. He stood next to her behind the desk, watching the room. "What is this?" he pointed at the paper.

"Autism," I repeated.

"Ah, autism," he bellowed. The other clerk hunched over the computer and started typing something. He mumbled something to her.

At this point I didn't know whether to laugh or cry. Since my son was with me, I was more inclined to laugh. It was really quite comical, as if someone has written a very politically-incorrect skit for Saturday Night Live.

Disability Employment

As the new chair of the National Governors Association, Delaware Governor Jack Markell has a disability employment initiative:

A Better Bottom Line: Employing People with Disabilities aims to increase employment among individuals with disabilities. Specifically, my initiative will focus on the employment challenges that affect individuals with intellectual and other significant disabilities and the role that both state government and business can play in facilitating and advancing opportunities for these individuals to be gainfully employed in the competitive labor market. Successfully achieving that goal will require not only attention to appropriate training, job placement, and work-based support but also advancing best practices and meaningful engagement of the business community. Because government, business, the general public, individuals with disabilities, and
their families all stand to benefit from increased employment of people with disabilities, all have a role and shared responsibility in reaching this goal.

At The Daily Beast, Eleanor Clift writes:

Markell tells of recently touring a Walgreens distribution center in Hartford, where half the 500 employees are people with disabilities of varying kinds. He learned that deaf people make the best forklift drivers, and he also realized that hiring the disabled is an issue that cuts across partisan lines. Together with him on the tour that day was Texas Rep. Pete Sessions, who chairs the National Republican Campaign Committee, and whose politics are the polar opposite of those of Markell, a Democrat and passionate surrogate for the Obama campaign.

Markell thought of Sessions as a hardliner—“a guy I would not want to have against me”—and was surprised to hear him speak so movingly about the issue of disabilities, and about his son, Alex, who has Down syndrome. Markell recalled the Texas congressman saying he has one son in the upper 2 percent of academic ability, and another in the lowest 2 percent, a disparity that motivated him to become the leading Republican advocate in Congress for people with physical and mental disabilities. 

... 

The Texas lawmaker is not looking for another government-driven program; he thinks there are already too many at the state and federal level. What he likes about Markell’s initiative is that it’s a public-private partnership, and it’s voluntary. Government is not forcing business to do anything. “Business is out here trying to do things; government gets in the way,” Sessions says. Today’s anti-big-government GOP doesn’t celebrate what former Republican president George H.W. Bush still considers one of his proudest achievements, signing the Americans With Disabilities Act in 1990.

An earlier post discussed fragmentation in federal policy on disability employment. Now there is an effort to remedy the problem, according to a release from the US Labor Department's Office of Disability Employment Policy:

Kathleen Martinez, assistant secretary of labor for disability employment policy, and Sharon Lewis, commissioner of the Administration on Intellectual and Developmental Disabilities, today signed a memorandum of agreement. Together, the U.S. Department of Labor's Office of Disability Employment Policy and AIDD, an agency within the U.S. Department of Health and Human Services' Administration for Community Living, will work to expand and promote integrated employment as the first employment option for individuals with significant, including intellectual and other developmental, disabilities.
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The partnership between the two federal agencies will further their coordination of resources and efforts so that the concept of “Employment First” – described at http://www.dol.gov/odep/topics/EmploymentFirst.htm  – is more broadly embraced. Many states already have resolved to implement policies that promote integrated employment as the first option of service for individuals with intellectual and other developmental disabilities through the establishment of Employment First initiatives. Both ODEP and AIDD support these initiatives and other efforts to change states’ employment systems by providing technical assistance, training and capacity building support..
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AIDD ensures that individuals with developmental disabilities and their families participate in the design of and have access to culturally competent needed community services, individualized supports and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life.

ODEP’s mission is to provide national leadership by developing and influencing disability employment-related policies and practices to increase the employment of people with disabilities

The Perceived Burden

Themba Carr and Cathy Lord have a new article in Autism.  The abstract:

The purpose of this study was to examine the stability of mothers’ perceptions of the negative impact of having a child with ASD in a sample of African American and Caucasian families as their children transitioned to early adolescence. Participants were mothers and children participating in an ongoing longitudinal study of children referred for diagnosis of ASD at age two. Analyses included data from two time points, when child participants were approximately 9 and 14 years old. Linear mixed model analyses were used to examine the relationship between the primary outcome variable, mothers’ perceived negative impact across time, and hypothesized predictors. Negative impact increased significantly from late childhood to into adolescence. However, African American mothers with lower education reported significantly lower levels of perceived negative impact at both time points. Findings show that for some families, the transition to adolescence is a period in which mothers experience increased amounts of negative impact and highlight the importance of examining the influence of socioeconomic variables. Furthermore, data suggest that there may be cultural differences mediating the relationship between maternal education, ethnicity, and perceived negative impact. Implications for the importance of including families from varying levels of socioeconomic status in ASD research are discussed.

Medical Daily adds more detail on the study:

Results revealed the amount of hours of treatment African-American children received compared to white children was significantly lower. By age nine white children received 1,856 more hours and by 14 the disparity between hours increases to 1,958.

Along with educational levels, cultural differences may also affect a mother’s perception of autism. In African-American communities where women have stronger traditional social networks and are regarded as an excessively religious person, may possibly be protective and see caring for a child with autism as “less of a burden and more of an accepted family obligation.”

According to Carr, “It could be that families that perceive children as a greater burden advocate more for services, or that having fought for services, some families are more aware of their children's negative impact on their lives.” She continued, “It may also be that parents perceive lower levels of negative impact of caring for their child do not feel as great a need to access services.”

A Potential Screening Tool

In Autism, Lauren Turner-Brown et al.say that "the First Year Inventory is a promising tool for identifying 12-month-old infants who are at risk for an eventual diagnosis of autism spectrum disorder."

MyHealthNewsDaily reports:

Using scores on the survey, called the First Year Inventory, the researchers identified 31 percent of children who were ultimately diagnosed with autism at age 3, the researchers said.

In addition, most of the children who were identified as being at risk for autism ended up having some type of developmental disability at age 3, whether it was autism or another condition.
...
However, the survey missed five of the nine children who had autism. This means that continued surveillance of children for signs of autism after one year would be encouraged, and that additional research is needed to identify other behaviors not examined by the test that may be signs of autism, the researchers said.

Insurance Settlement in Washington State

The Seattle Times reports:

Children with autism whose parents have health insurance through the state's Uniform Medical Plan may be covered for an intensive type of therapy, under a settlement announced Monday.

A class-action lawsuit was filed in King County Superior Court in 2010 against the state's Health Care Authority (HCA) on behalf of several children with autism and autism-spectrum disorders.

There are more than 860 members of the class, according to the lawsuit.

The settlement spells out details of the autism benefit for future coverage through the Uniform Medical Plan for current employees of the state and some school districts and local governments.

It includes providing Applied Behavioral Analysis (ABA) therapy in a natural setting, such as a child's home or community, when recommended by an autism expert to address behaviors affecting development, communication or adjustment.

"This is a watershed moment for Washington families with autism," said Arzu Forough, CEO of Washington Autism Alliance & Advocacy and a parent of two of the named plaintiffs. "With HCA's leadership, we are entering a new era of full coverage for persons with autism."

More detail is available from Autism Votes. 

Study of the Impact of Insurance Mandates

A new study  by Susan Parish et al. looks at the effectiveness of insurance mandates in reducing family financial burdens. It appears in the journal Intellectual and Development Disabilities.  A release from Brandeis University:

“We found that families who live in states that have passed parity legislation spent considerably less for their children with autism than families living in states without such legislation,” Parish says.

The study examined data from the National Survey of Children with Special Health Care Needs, which includes a group of more than 2,000 children with autism living across the United States.

Data revealed that more than one-third of the families reported spending more than three percent of their gross annual incomes on services for their children with autism.

“Families raising children with autism incur exceptionally high out-of-pocket costs. These costs pay for things that insurance doesn't fully cover, like therapies and behavior management interventions,” says Parish. “These services are often critically important to the well-being and development of children with autism.”

Where families live really matters, Parish concluded. Families living in states that had enacted so-called parity legislation had much lower financial burden than families who lived in states without such legislative protections.

Data found that 60 percent of families in Massachusetts, Missouri, and Utah had out-of-pocket in excess of $500 annually. By comparison, 27 percent of Maine families spent above $500 annually. At the time the survey was collected, in 2005, Massachusetts, Missouri and Utah did not have parity legislation, but Maine did. 
Furthermore, these findings were robust. Even after controlling for a host of characteristics including severity of the child's impairment, family income, and state wealth, families' financial burden was much less if they lived in states that had passed parity legislation.

Duplication and Overlap in Disability Employment Programs

The Government Accountability Office reports:

GAO identified 45 programs that supported employment for people with disabilities in fiscal year 2010, reflecting a fragmented system of services. The programs were administered by nine federal agencies and overseen by even more congressional committees. All programs overlapped with at least one other program in that they provided one or more similar employment service to a similar population—people with disabilities. The greatest overlap occurred in programs serving veterans and servicemembers (19 programs) and youth and young adults (5 programs). In addition, GAO identified seven programs that did not limit eligibility to any particular population and were potentially available to veterans and servicemembers or youth. Some overlapping programs, such as those with specific eligibility requirements, have less potential for duplication—providing the same services to the same beneficiaries—than others. However, even when the potential for duplication of services is low, there may be inefficiencies associated with operating multiple programs that provide similar services to similar populations. Coordination across programs may help address fragmentation and potential duplication, but officials that GAO surveyed reported only limited coordination. However, among six selected programs that only serve people with disabilities—including the Department of Education’s Vocational Rehabilitation program and the Social Security Administration’s Ticket to Work program—officials cited more consistent coordination.

The Department of Labor jointly administers the Workforce Recruitment Program with the Department of Defense and the Work Opportunity Tax Credit with the Internal Revenue Service. These programs are therefore included under both the Department of Labor and the other administering agencies in the figure. Most (32) of the 45 programs surveyed tracked at least one employment-related outcome measure for people with disabilities, but overall little is known about the effectiveness of these programs. The most commonly tracked outcomes for people with disabilities were “entered employment” (28 programs) and “employment retention” (18 programs). However, it may be difficult to compare outcomes across programs, in part, because of variation in the type and severity of participants’ disabilities. In addition, only 10 of the 45 programs reported that an evaluation had been conducted in the last 5 years. Just one of the 45 programs (Job Corps) reported conducting an impact study—a study that would most clearly show whether the program (and not other factors) was responsible for improved employment outcomes for people with disabilities. However, additional studies are underway for at least two other programs.

Hearing on Seclusion and Restraint

A number of posts here have dealt with restraint and seclusion in schools, as well as proposals to curb these practices.  On Thursday, the Senate Committee on Health, Education, Labor and Pensions held a hearing on the subject. (See the notice of the hearing, where Senator Harkin mentioned the "therapy bag" incident.) At Education Week, Nirvi Shah wrote:

Today's hearing concentrated on how schools and students have and can avoid using restraints and seclusion and address the behavior that may have triggered those techniques to be employed in the first place. (That's some of what I wrote about in this story previewing the hearing.)

...

While the hearing's witnesses favored a federal law that would crack down on the use of restraint and seclusion—Sen. Harkin has sponsored this bill that would do just that, as would a similar bill sponsored by Rep. George Miller, D-Calif., in the House—support for a law is far from universal.

The American Association of School Administrators opposes a federal law, and says school administrators must be able to restrain and seclude students. The organization outlines its position in this report, out this week. The Autism National Committee came out with a rebuttal of that report this morning.

And while a previous Miller bill passed the House when Democrats ruled that chamber, his current bill hasn't had a hearing.

House education committee chair John Kline, R-Minn., is concerned that federal intervention could obstruct state efforts to regulate the practices—several states have passed their own laws governing the use of restraints and seclusion—and federal action could thus do more harm than good.

IACC Meets

This past week the Interagency Autism Coordinating Committee (IACC) met for the first time since reauthorization of the Combating Autism Act.  Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D., reports:

“Frustration” is the word that best captures the sentiment of the many members of the public who attended and spoke at the meeting. Whether one views the progress of the past several years as a “cup half empty” or a “cup half full,” one thing is clear. The cup isn’t full.
Secretary Sebelius, who spoke at the meeting, rightly applauded the passage of the Affordable Care Act. This legislation guarantees that no one can deny insurance coverage to individuals with autism. Additionally, insurers must pay for autism screening and end lifetime limits to coverage.

Secretary Sebelius also acknowledged that, while progress has been made, we have a long way to go, and we need answers from research. She stressed the need to make more progress in early detection and access to intervention for ethnic minority communities, who are sorely underserved in our country.

... Furthermore, although the new health care law means that autism screening must be covered, a bigger problem is that pediatricians often fail to screen for autism, despite the fact that the American Academy of Pediatrics recommends they do so twice by the time a child turns two.

As I pointed out in a comment I made directly to the Secretary, the autism community is frustrated and impatient. After all, since Congress established the IACC, autism’s prevalence has dramatically risen. The annual costs of autism care have increased from $35 billion a year to $137 billion. At least half of children with autism don’t receive early intensive behavioral intervention, despite the fact that an NIH-funded study showed that such interventions can produce life-changing outcomes.

We have only two FDA-approved medicines for the treatment of autism, and these medicines don’t address its core symptoms. A large proportion of adults with autism remain unemployed and socially isolated, most living unengaged in their parents’ home. We know almost nothing about the health needs of adults with autism, nor how their needs change with age. We do know that the mortality rate for individuals with autism is six times higher than the general population.

...
Michael Doyle and Christopher Smith, U.S. representatives who co-sponsored the Combating Autism Act and chair the Congressional Autism Caucus, spoke at the meeting. Doyle noted that the "CDC revealed shocking new numbers and much more needs to be done to understand the causes of the increase." He stressed that, in this fiscal climate, we are unlikely to get additional resources for autism. Smith similarly noted "scarce dollars and overwhelming need." He emphasized the need for environmental risk factor research and also talked about autism from a global perspective, noting that 67 million persons are affected worldwide.

Francis Collins, director of the National Institutes of Health (NIH), reviewed the progress in scientific research that has been made in the last five years, including the ability to diagnose earlier, a five-minute screening test that can be administered at the one-year checkup, early intervention for toddlers and identification of genetic and environmental risk factors. He talked about the NIH's commitment to translational research, stating that the NIH has stepped forward to address bottlenecks in the translation of biological discoveries into therapeutics in the clinic.

I and others raised the concern that it’s difficult to accurately monitor how much the federal government is spending on autism research and services. The IACC portfolio analysis is a step in the right direction. But questions remain about how funding is categorized. What funds are being directed to research? What funds actually go to services? How much of the research categorized as “autism research” truly focuses on autism rather than topics only indirectly related to autism?

Immediately following the meeting, the Autism [sic] Self Advocacy Network (ASAN) released an alert asking people to write to Health and Human Services to express their concerns about how funding is tracked and allocated and to advocate for more research on services. (See their action alert, here.)

In his wrap-up, Tom Insel, director of the National Institute of Mental Health and chair of the IACC, noted that, even among those on the committee, great differences remain in how autism is viewed. Some see autism as a disease that needs to be cured. Others think of it as a disability and, as such, believe the primary focus should be on services and supports. Others see autism as an injury deserving of compensation with prevention being the foremost goal. He urged the committee members to find common ground.

Autism, Social Media, and the Internet

Although this report from the Pew Research Center is not specifically about autism, it does suggest the importance of the internet to caregivers:

Thirty percent of U.S. adults help a loved one with personal needs or household chores, managing finances, arranging for outside services, or visiting regularly to see how they are doing. Most are caring for an adult, such as a parent or spouse, but a small group cares for a child living with a disability or long-term health issue.

Eight in ten caregivers (79%) have access to the internet. Of those, 88% look online for health information, outpacing other internet users on every health topic included in our survey, from looking up certain treatments to hospital ratings to end-of-life decisions.

Caregivers are significantly more likely than other internet users to say that their last search for health information was on behalf of someone else: 67% vs. 54%. Just 29% of online caregivers say their last search was solely focused on their own health or medical situation, compared with 40% of non-caregivers who go online for health information.

The abstract of Cornelia Betsch et al., "Opportunities and Challenges of Web 2.0 for Vaccination Decisions," Vaccine 30 (2012) 3727– 3733:

 A growing number of people use the Internet to obtain health information, including information about vaccines. Websites that allow and promote interaction among users are an increasingly popular source of health information. Users of such so-called Web 2.0 applications (e.g. social media), while still in the minority, represent a growing proportion of online communicators, including vocal and active antivaccination groups as well as public health communicators. In this paper, the authors: define Web 2.0 and examine how it may influence vaccination decisions; discuss how anti-vaccination movements use Web 2.0 as well as the challenges Web 2.0 holds for public health communicators; describe the types of information used in these different settings; introduce the theoretical background that can be used to design effective vaccination communication in a Web 2.0 environment; make recommendations for practice and pose open questions for future research. The authors conclude that, as a result of the Internet and Web 2.0, private and public concerns surrounding vaccinations have the potential to virally spread
across the globe in a quick, efficient and vivid manner. Web 2.0 may influence vaccination decisions by delivering information that alters the perceived personal risk of vaccine-preventable diseases or vaccination side-effects. It appears useful for public health officials to put effort into increasing the effectiveness of existing communication by implementing interactive, customized communication. A key step to providing successful public health communication is to identify those who are particularly vulnerable to finding and using unreliable and misleading information. Thus, it appears worthwhile that public health websites strive to be easy to find, easy to use, attractive in its presentation and readily provide the information,
support and advice that the searcher is looking for. This holds especially when less knowledgeable individuals are in need of reliable information about vaccination risks and benefits.

Insurers Have Not Come Through in Utah

The Salt Lake Tribune reports:

Though Utah has yet to join the several dozen states mandating insurance coverage of autism treatment, legislators created an autism-treatment pilot program earlier this year that was expected to be voluntarily funded, in part, with private dollars. The two-year pilot was seen by many as a compromise, providing treatment for about 350 children between the ages of 2 and 6, through a combination of Medicaid, state and private dollars.

House Speaker Becky Lockhart said Wednesday that "no one has reneged on the commitment" and that the donations would be divulged in a future news conference. Rep. Ronda Menlove, R-Garland, who sponsored the bill to create the pilot, could not be reached for comment. Two of the funders, including Zions Bank, said their pledges remained good.

"We’re still committed to providing funding for that and will do so at the appropriate time, when that’s indicated by the state," said Daron Cowley, a spokesman for Intermountain Healthcare.

Yet state officials say they have not received any funding though the law went into effect July 1. Not having the private dollars could reduce by more than half the number of children in one part of the pilot program, which is set to begin in the coming months.

IDEA, LRE, and Transitions

Nirvi Shah writes at Education Week:

Too often, when students with disabilities are moving from school to the workplace—a phase typically called transition—some of the basic tenets of the federal Individuals with Disabilities Education Act are ignored, said Jeff Spitzer-Resnick, managing attorney for Disability Rights Wisconsin.

That includes being placed in the least restrictive environment—in other words, with nondisabled peers to the extent possible.

"We have long been concerned that children with disabilities in general were not getting what they needed in transition," he said. For too long, "transition" meant a pipeline to work in a segregated environment, often at so-called sheltered workshops, which typically pay less than minimum wage, he said, "without any real conversation about whether this was appropriate. What about a job coach? What about assistive technology? [These are] all the things they consider for the classroom environment?

While the problem is a stubborn one, in part because work options in some communities are limited in general and in part because of a lack of teacher training about transition, Spitzer-Resnick said there's hope.

A letter from the U.S. Department of Education to his organization last month about this issue emphasizes that the tenets of IDEA do apply to transition.

Unemployment and Disability

Previous posts have dealt with the employment challenges facing people with ASD (e.g., sheltered workshops that segregate and stigmatize).  Monthly labor statistics do not have a separate category for autism, for overall data for the disabled may give some hint of the magnitude of the problem. Shaun Heasley writes at Disability Scoop:

Some 13.3 percent of those with disabilities were jobless in June, according to a monthly employment report from the U.S. Department of Labor released late last week.

That’s an increase from 12.9 percent unemployment the previous month.

Meanwhile, the jobless rate for the general population remained flat at 8.2 percent as the economy added 80,000 new jobs, a figure seen by many as disappointing.

The situation is even more disturbing than these numbers suggest. According to the Bureau of Labor Statistics, the labor force participation rate for people with disabilities was a mere 20.5 percent, compared with 70 percent for the non-disabled population.

50 Cent Apologizes

In an apparent resolution to a controversy, 50 Cent has tweeted:

Is it sincere?  Maybe, but it's more likely that some public relations person put up these words to make the controversy go away.

TV Coverage of the California Mandate

KSEE in Fresno:



KTTV in Los Angeles:

Los Angeles Local News, Weather, and Traffic

Miss Montana

The new Miss Montana is from the community of Cut Bank.  She is also on the spectrum.  The Great Falls Tribune reports:

At the conclusion of the statewide competition held in Glasgow this year, 18-year-old Alexis Wineman was crowned as Miss Montana. Wineman is a recent graduate from Cut Bank High School and the daughter of Kimberly Butterworth and Michael Wineman.

Wineman' s selection as Miss Montana is made even more impressive by her own struggle to overcome the stigma of autism.
...

People with high functioning autism frequently suffer from frequent and intense feelings of loneliness, and may have trouble making and maintaining friendships. Despite this, Wineman, who was diagnosed with the disorder in the seventh grade, won the prestigious competition that requires both poise and confidence.

Wineman said she was a bit "shocked " to win the Miss Montana, especially in her first year of competition. Yet the judges found something compelling in her presentation, a platform of autism awareness entitled, "Normal is just a dryer setting — Living with Autism."

Soon after her selection, KXGN reported:



If she were to become Miss America, she would not be the first person with a major disability to earn the crown.  The 1995 Miss America was Heather Whitestone, who is hearing-impaired.

Autism and Murder

The Autistic Self-Advocacy Network has been sounding the alarm about family members who murder ASD children.  

Autism mom Jo Ashline writes in The Orange County Register:

It's not OK to kill your child - even if he has autism

Has the headline of my post gotten your attention?

Good. That's the whole point.

Now, for most of you, "It's not OK to kill your child" will illicit responses such as, "Of course it isn't!!" and, "Who in their right mind would think it's OK?!"

And yet, there's this strange phenomenon happening in our society whenever a news story breaks about another individual with autism dying at the hands of a parent. Rather than outrage, many people express feelings of sympathy for the perpetrator, which in many instances is the mother of the victim.

Yesterday a news story out of Grand Junction, Michigan, informed readers that Yodi Jackson, mother of 25-year-old Chad Jackson, who had autism, was arrested in connection with his 2011 death. It took investigators a full year but after gathering enough evidence, law enforcement charged Yodi yesterday with second-degree murder and second-degree felony abuse.

Now, let me remind you, a young man lost his life, and yet comments on the article all but justified Yodi's alleged actions.

...

My son, in all of his imperfect beauty, makes this imperfect mama feel blessed each and every day. He is my miracle and the world is a better place to live because of him, not in spite of him.
I am the rule, not the exception.

Which means that the moms and dads who end their autistic children's lives in a fit of anger, frustration, or as a "mercy killing" do not deserve our pity. These killings are just as wrong, just as deplorable, just as DISGUSTING as if it were any other child, and we need to knock it off with all of the earnest comments aimed at justifying the actions of these parents. Raising someone with autism, though challenging and difficult for many reasons, is an honor.

50 Cent Update

Rapper 50 Cent has taken down his offensive tweet ( “i just saw your picture fool you look autistic” )  The Huffington Post reports:

At the very least, Peete requested that 50 delete his insulting tweets. He has obliged, but many parents in the special needs community aren't satisfied. One mother, Miz Kp, whose 4-year-old son is on the autism spectrum, is waiting for a real apology. "In addition to giving an apology, 50 Cent needs to learn more about autism and the families affected by it. Lack of exposure can also breed ignorance," she wrote on her blog, Sailing Autistic Seas.

Many other autism bloggers have chimed in. Jeannette, aka Autism Mama, wrote "autism is known as the invisible disability," and then posted several photos of kids on the spectrum. Babble writer, Joslyn Gray, who has two children with autism reposted a video she made in April (for Autism Awareness Month) in response to the controversy. In real life, the video says, those with autism don't necessarily "look" like Rain Man or Forrest Gump -- that's only what movies would have you believe. In reality, as evidenced by her 3-minute photo montage, kids with autism look like any other kid: happy, smiley and adorable.

Some parents on Twitter have suggested boycotting 50 Cent's products and music. But Phil Evans, a 25-year-old with Asperger Syndrome thinks the rapper's misstep should be used as a lesson -- "Think before you talk." On his blog My Autistic Life, Evans wrote:

"Offending those who have autism may not have been intentional but when thoughts are released into such a public space, always consider what is being said when people could be affected by it."

Jeremy Robb writes at Technorati:

Why do I feel so strongly? Because while growing up my brother, who was never diagnosed with autism (they didn't do that sort of thing in the 70's and 80's) was often the outcast. He was even used as a punishment on the bus while going to Junior High (If you were a problem child, you had to sit next to my brother). It was frustrating, and I often got into disagreements with the bus driver (and did a lot of walking home) over this very thing.

People with autism are just like everyone else. They have feelings, they care about what others think of them. They want to have friends, socialize, and be "normal". They don't need prominent celebrities alienating them in a public forum, even if it's in response to inappropriate behavior.

Some have called on 50 Cent to apologize. Others have called for a boycott. Personally, a boycott for me wouldn't mean anything, as I never have and probably never will want to purchase his music anyway. But I do think something very powerful needs to be said here. Autism isn't a joke. I don't want it to be turned into another attack by kids. I don't want to see what happened to my brother happen to anyone. Ever.

50 Cent, I'm sure you don't care about what the autism community is saying about you. I'm sure you think you are safe in your record deals, fame, and fortune. Sure, you didn't make a racial slur, or attack anyone because of their sexual preference. But you did attack my two sons. And that's just not cool. Perhaps you should have thought before you wrote anything.

A TV Report on ABA

Another in KNBC-TV's series:

Stacy and Alan Vo spent thousands of dollars on speech and behavioral therapy for their son, Sean, who was diagnosed with autism. When they submitted their bills to the insurance company, they were denied. The Vo's say they "went through hell" trying to get their son's therapy covered. Now, a most plans will have to cover the intervention, called applied behavioral analysis, thought to be one of the most effective treatments for autism. John Cadiz-Klemack reports for the NBC4 News at 5 p.m. on July 2, 2012.

View more videos at: http://nbclosangeles.com.

See companion piece here.

More on the TRICARE Hearing

At The Huffington Post, Jeremy Hilton writes about the recent TRICARE hearing:

At the hearing, Dr. Vera Tait, Associate Executive Director of the American Academy of Pediatrics (AAP) and Dr. Geraldine Dawson, Chief Science Officer for Autism Speaks, both strongly asserted ABA as a critical medical treatment, citing decades of peer-reviewed scientific studies. Dr. Dawson concluded, "This is not a matter for further study. Action is needed to provide the quality of care our military families deserve and have earned."

Contrary to the DoD's position, the Office of Personnel Management (OPM) recently concluded, "There is now sufficient evidence to categorize ABA as medical therapy." This was welcomed news for millions of federal employees and offered renewed hope for military families seeking the same. However, at the Senate hearing on Thursday, OPM Director of Healthcare and Insurance, John O'Brien, seemed to backpedal, stating that just because OPM classified ABA as "medical therapy" didn't mean that it was "medically necessary." It was a slap in the face to our military families as OPM seemed to be attempting to provide cover for the DoD. At a time when the White House and the First Lady's initiative, Joining Forces, have consistently opened their arms to military families, it is ironic that two executive branch agencies simultaneously deny our military children the prescribed medical treatments they need.

So why are thousands of military families still being denied ABA?

Because TRICARE is subscribing to outdated, unscientific reports from an online database to argue that ABA is not their responsibility. A United States District Court in Florida rejected the same ABA report that TRICARE relied upon (the Hayes Report), when it ordered Florida's Medicaid program to include ABA as a medical treatment for autism. This is not news to the Berges, a retired military family who filed a class action lawsuit in the United States District Court of D.C. on behalf of military families. Sadly, TRICARE and DoD would rather defend their practices in federal court than ensure military dependents receive the care they need.

Holly Robinson Peete v. 50 Cent

"Autistic" is becoming a casual slur in popular culture, not to mention politics.  Holly Robinson Peete writes about the latest incident in an open letter to 50 Cent:

Since last night my twitter timeline is flooded with tweets and retweets about a response you posted to someone who insulted you. When I read it my heart sank. I thought maybe your account had been hacked. No such luck. Granted, his comment was completely out of line but your retort: “i just saw your picture fool you look autistic”- was so so disappointing. I mean, that’s your comeback?? And you didn’t stop there. You went on to joke about not wanting “special ed kids” on your timeline. Seriously, THIS is how you use your platform of 8 million plus followers??

I’ve met you in passing over the years and I know you are a bright, astute businessman and legitimate philanthropist so it is with a bit of sincere confusion that I ask you… Do you even know what autism is? And what exactly does “autistic” look like? Do you know how wildly prevalent autism is? 1 in 88 have it. That’s 1 in 54 boys. Families suffer a social stigma you will never know. It is a financial and emotional drain for millions, so our non-profit- HollyRod Foundation works hard to raise funds to help these families cope…

I hope you can see how what you might see as a benign insult-or not- was so randomly hurtful, immature and misinformed. Maybe you are naive or indifferent as to how many of your fans might be deeply and personally offended by your insult. At the very least-can you please delete it? If you’ve read your mentions today I am sure you have felt the wrath of autism parents. We are no joke. Neither is autism. We are not about to let you attempt to make “autistic” the new “R-word” under our watch.

Finally, this is my son Rodney Peete. He has autism. So I guess this is what autistic looks like? He is in special ed. He loves rap music and is a HUGE fan of yours. He’s a tremendous kid. He has to deal with so much trying to fit in. This isn’t helping.