Autism Speaks Urges ABLE Action

From Autism Speaks:

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

Voting Rights

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

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

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

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

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

See here for a brief summary of state laws. 

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.