Wednesday, January 28, 2015

Obstacle to Georgia Autism Bill

In Atlanta, Doug Richards reports at WXIA:
Although a Senate committee passed a bill requiring health insurance coverage for children with autism, its future is cloudy in this year's session of the General Assembly.
The autism bill passed unanimously in the Senate insurance committee and is popular among Senate leadership. Parents of children with autism have lobbied at the capitol for years for its passage. But business and insurance lobbyists oppose it – and House Speaker Rep. David Ralston (R-Blue Ridge)says he is unwilling to support a bill that he says may pose a hardship on small businesses.
"My concern is that we have to have a resolution that's fair and doesn't work a hardship on businesses that results in people losing jobs because of a mandate," Ralston said Monday.
Last year, Gov. Deal ordered the state insurance system to cover autism treatment for the children of state employees. Ralston says he wants to wait a year or more for a cost benefit analysis from that program before supporting the autism bill.
Ralston takes a lot of campaign money from the insurance industry. 

Tuesday, January 27, 2015

Mississippi Stories

In Jackson, Mississippi, Emily Le Coz reports at The Clarion-Ledger:
Mississippi Secretary of State Delbert Hosemann today released a lengthy plea of support (posted in its entirety below) for a pair of bills he helped craft that would require health insurers to cover autism services.
Hosemann, whose 3-year-old grandson was diagnosed with autism last year, urged legislators to pass Senate Bill 2581 and House Bill 885. He also included some heartbreaking testimony from parents and professionals who deal with autism every day and who support the measure.
...
Here's the entire email from Hosemann:
 Every child deserves a chance ...
10,000 children are affected by autism in Mississippi and none are covered by insurance for the most recommended treatment. Thirty-eight other states have adopted insurance coverage for autism.
Please take a moment to read statements from parents and professionals who work with this issue.
We ask you to support the Autism bill. The following are dates, times, and room numbers for committee meetings at the Capitol this week in which the Autism Insurance Bill should be brought up for a vote:

Tuesday, January 27th at 1:00 pm in Room 402 - House Insurance Committee
Wednesday, January 28th at 2:00 pm in Room 210 - Senate Insurance Committee
"After seeking a . . . BCBA, my brother at the age of about 12 began to use approximations to request preferred items as well as attempt to feed himself, urinate in the toilet, bathe himself, dress himself, etc. . . Although we were truly blessed to have such help, I began to notice that my father was never around. The reason being was...he worked. He worked all day every day in order to provide for his child with special needs. . ." --Amber Orman, BCBA, West Point, MS
"As a single mom I am still struggling with healthcare issues for my son who currently needs other treatment to assist with his condition. I am having to make hard decisions and go without needed medical services and pay for medical bills for which I did not have coverage when our health insurance was denied...We need your help."--Melinda Todd, Parent, Jackson, MS
"You can imagine the...blow when you find out that the insurance you have paid for does not cover anything for your child. Then, to find out that you basically have to move to find the only therapy program available, is in Jackson, and even then, no insurance coverage, just money up front."--Elizabeth Cobb, Parent, Madison, MS
"Time is not on the side of the children diagnosed with autism. My family moved from Georgia to Fulton, MS to help in any way that we could. The need was so great that the Autism Center of North Mississippi was born. We can barely provide services due to lack of insurance coverage. The majority of our families live below the median income level and struggle to pay for gas to come to our center, much less pay for behavior analytic therapy. This bill must pass so that the children can get the help that they need without causing a hardship on the family. Autism is hard enough!!!"--Sharon Boudreaux, BCBA, Tupelo, MS
"The lack of programs and resources for children on the Autism Spectrum in our state is underwhelming to say the least, while right here in our backyard at UMMC, Dr. Rik Lin and his team are performing groundbreaking research into the causes of ASD, How tragic if this research being conducted in our world renown facilities cannot help the families who live right here!"--Frances Rooks Patterson, Special Olympics, Madison, MS
"We were determined to help our little girl come out of her own distant world, and come into ours. Alayna has been receiving the ABA therapy now for a little over four years. . . . She continues to progress and we are amazed to see how much she has changed since she first began therapy in 2010." --Angela Tate, Parent, Pontotoc, MS
"In 2009, my brother, John, was diagnosed with autism at the age of two. He could not communicate his wants and needs with me or my family. Instead, he would bang his head, hit, bite, and scream. His aggression and self-injury was completely overwhelming...Within months of therapy, John began showing improvements. Even the smallest gain had the biggest impact on our family."--Haley Wood, BCBA, Tupelo, MS
"Children who would have never dreamed of attending college, if provided treatment early and in an intensive manner, many children will not only attend, but also graduate from college and move on to a rewarding career and life. By not providing treatment early in their lives, we stack the deck against them, and our entire state, who will (in one way or the other) be responsible for their lifelong care."--Dr. James Moore, Visiting Assistant, USM, Hattiesburg, MS
"Without early intervention, children with ASD suffer isolation, unemployment, high rates of comorbid mental illness and institutionalization, and poor school achievement. Not only would passing this legislation make an incredible impact on the lives of children with ASD in the state of Mississippi, but it would ultimately save taxpayers money. In a study conducted by Chasson, Harris, and Neely (2007), it was found that the state of Texas would save $208,500 per child with ASD across 18 years of education if early intensive behavioral interventions were implemented. Using a conservative estimate of 4500 children with ASD in the state of Mississippi, based on 2012 NACCRRA estimates of 287,047 children aged 5 to 11 in the state and recent CDC findings that 1 in 64 children has an autism spectrum disorder, Mississippi would save approximately $935,145,304.00 by mandating insurance coverage for early intensive behavioral interventions."--Dr. Keith Radley, Assistant Professor, USM, Hattiesburg, MS

Monday, January 26, 2015

Vaccines, Autism, Mercury

Emily Foxhall writes at The Los Angeles Times:
The success of vaccines seems to have given people cause for not vaccinating as much as they once did, said Los Angeles resident Derek Bartholomaus, who runs a website called "the anti-vaccine body count."
The site keeps a ticker of preventable illnesses (144,886), preventable deaths (6,312), and number of autism diagnoses scientifically linked to vaccinations (0) since June 3, 2007.
Still, Bartholomaus is not sure how many minds he's changing.
"It's really hard because it gets into the conspiracy theorist mentality," he said. "If it were just a rational and logical discussion, there's no debate. Vaccines are safe and effective.
One thing about Google trends is that they normalize their graphs. They take the highest interest level and set that at 100. So the two graphs above don’t tell us how the “autism mercury” search compares with interest in autism in general. Let’s graph them both, shall we? (click to enlarge)
autism and autism mercury comparison
Blue is autism. Red autism mercury. Yes, that line at the bottom that is so small you can’t see the trend at all is autism mercury. And that’s the point that I found most interesting. For all the noise made by the “mercury moms” in the past, the mercury idea was never as big a movement as they would like you to believe.

Sunday, January 25, 2015

Measles and the Anti-Vaccine Movement

Terrence McCoy writes at The Washington Post:
Just before 7 p.m. last Thursday, as the Disneyland measles outbreak was emerging, the Los Angeles Times published an outraged editorial. It didn’t blame Disneyland, where the outbreak originated before going on to infect 70 people across six states. Nor did it blame any public agency. Instead, it took aim at a buoyant movement that won’t “get over its ignorant and self-absorbed rejection of science.”
The faction was the anti-vaccine movement — its holy text a retracted medical study, its high priest a disgraced British doctor named Andrew Wakefield. “The prospect of a new measles epidemic is disturbing,” the editorial said. “So is the knowledge that many ill-informed people accept a thoroughly discredited and retracted study in the journal Lancet that purported to associate vaccination with autism.”
Officials from Mexico to California are now scrambling to contain an outbreak that began at Disneyland but has now spilled across state lines, infecting dozens, many of whom never received the measles-mumps-rubella vaccine (MMR).
...
And in Wakefield, who still preaches the gospel of anti-vaccination from Texas, such individuals find a true martyr — a man who has sacrificed everything to take on powerful pharmaceutical companies and the biggest villain of all: the government. Those who came to hear him speak in 2011 at Graceview Baptish Church in Tomball, Texas, left messages of encouragement, according to the New York Times: “We stand by you!” and “Thank you for the many sacrifices you have made for the cause!” Another person, suddenly aware that a reporter was in the midst, warned the writer she better be careful. “Be nice to him,” the woman said. “Or we will hurt you."
“To our community, Andrew Wakefield is Nelson Mandela and Jesus Christ rolled up into one,” J.B. Handley, co-founder of a group that disputes vaccine safety, told the Times. “He is a symbol of how all of us feel.”
Tara Smith writes at Slate:
While the incidence of measles has dropped about 99 percent since the introduction of the vaccine for measles, mumps, and rubella, that doesn’t mean we’re out of the woods. The past year has shown a resurgence in measles infections in the United States. Last year was the worst year for measles in two decades. While we’ve seen fewer than 100 cases of measles in most years since the turn of the century, that number spiked to 644 cases in 2014, from 23 separate outbreaks in 27 states.

Before the vaccine, the United States saw approximately 4 million cases of measles each year and 400 to 500 deaths. These are the stats that vaccine-deniers tend to emphasize—a relatively low number of deaths compared with the number of infections. However, those statistics alone leave out a big part of measles infections. Prevaccine, almost 48,000 people were also hospitalized each year because of measles and measles complications. One in 20 of those infected developed pneumonia. More rarely but more seriously, each year 1,000 became chronically disabled due to measles encephalitis.

Measles is not a benign disease.
Christopher Ingraham writes at The Washington Post:
A 2014 AP-GfK survey found that only 51 percent of Americans were confident that vaccines are safe and effective, which is similar to the proportion who believe that houses can be haunted by ghosts. I don't need to make the case about how harmful these beliefs are -- it's been done plenty of times before, and moreover studies show that arguing with anti-vaxxers only makes them more confident in their beliefs.
But the latest CDC data illustrate the troubling resurgence of a disease that, as of 2000, had been declared eliminated. Anti-vaxxers are quite literally turning back the clock on decades of public health progress.
Adam Nagourney and Abby Goodnough write at The New York Times:
Dr. James Cherry, a specialist in pediatric infectious diseases at the University of California, Los Angeles, said the outbreak was “100 percent connected” to the anti-immunization campaign. “It wouldn’t have happened otherwise — it wouldn’t have gone anywhere,” he said. “There are some pretty dumb people out there.”
The Los Angeles Times reports on a case of closing the barn door after the horse is out:
The number of California parents who cite personal beliefs in refusing to vaccinate their kindergartners dropped in 2014 for the first time in a dozen years, according to a Times data analysis.
The shift came amid rising alarm over the number of children being exempted from immunization, which prompted new campaigns to reverse the trend.
A state law that went into effect last year made it more difficult for parents to excuse kindergartners from vaccines. Instead of signing a form, parents now must get a signature from a healthcare provider saying that they have been counseled on the risks of rejecting vaccinations. Alternatively, they can declare they are followers of a religion that prohibits them from seeking medical advice from healthcare practitioners.

ID Cards in Minnesota

At The Minneapolis Star-Tribune, Gail Rosenblum write of Dawn Brasch  education and training specialist at the Autism Society of Minnesota (AuSM) and mother of a young adult son with autism. When meltdowns happen, she hands out a card.
“This child has autism,” the card reads. “Please be patient while we help our child regain control.”

Now her son carries his own card, beginning with the words, “I have autism.” An explanation of autism is printed on the reverse side.

It’s a sad commentary on modern life that parents and other caregivers, sometimes pushed to the brink of physical and emotional exhaustion, have to worry about icy stares, too. But requests for autism cards are growing, in Minnesota and beyond.

AuSM, a St. Paul-based advocacy and education organization, sells five cards for a dollar. Websites now offer many versions, from informational to heartbreaking.

“You can’t imagine what it is like to live like this every day and your stares and whispers do not help,” reads one. “Please educate yourself before you judge. Parents like me need all the support we can get.”

On Jan. 1, the Alabama Department of Public Health began issuing autism ID cards to ease interactions with first responders, such as police officers, firefighters and emergency medical teams. People with autism are seven times more likely to get into trouble with the criminal justice system, due largely to misread cues.

“Those events are often anxiety-producing for anybody,” said Bama Hager, policy and program director for the Autism Society of Alabama, and the parent of a 14-year-old son with autism. “For an individual on the autism spectrum, an interaction with a responder can exacerbate symptoms. For many, verbal communication is quite challenging.”

Saturday, January 24, 2015

Would the Obama Tax Plan Kill ABLE Accounts?

A few weeks ago, the president signed the ABLE Act.  But now he is proposing a change in tax law that could effectively kill it.

Ryan Ellis writes at Forbes:
Like other 529 plans, ABLE account contributions are made after-tax. The money grows tax-free. Provided the contributions and earnings are used for qualified disability expenses, withdrawals are tax-free. They very much resemble Roth IRAs, except the savings intention here is disability costs and not retirement.
The Administration’s plan calls for all earnings distributions on 529 plans to be subject to ordinary income taxation, at rates as high as 39.6 percent. Will this include the new type of 529 plan signed into law by President Obama just a month ago, the ABLE account?
If the Obama tax hike plan sweeps in ABLE accounts, they may never actually achieve liftoff. Conventional 529 plans would “dry up” and die off, according to Joe Hurley of the 529 portal website savingforcollege.com. “States that are not able to retain sufficient assets in their 529 plans will have a difficult time keeping their plans open,” Hurley added.
Since ABLE accounts are only a little over a month old, none have actually been established yet by 529 sponsors (i.e., states). If the tax treatment were to change, there would be no market for ABLE accounts and no incentive to invest resources in rolling them out for parents of disabled kids
Even if ABLE accounts are excluded from the rest of the president’s tax hike plans for 529s, it would still kill them off. Since ABLE accounts will only be offered in conjunction with the larger 529 accounts, the death of the latter necessarily means the stillbirth of the former. It’s like shooting the horse and expecting the cowboy to keep riding.

Friday, January 23, 2015

Accountability Tests

Christina Samuels writes at Education Week:
Lawmakers are wading into the complicated issue of accountability tests as they ponder changes to the law currently known as No Child Left Behind, but a group of disability advocacy organizations are already saying they don't want to see one change that has been floated—an elimination of the cap on students who can be tested to "alternate achievement standards."
Currently, about 1 percent of all students—equivalent to about 10 percent of students with disabilities—can be counted as proficient for accountability purposes on tests that have less depth, breadth, and complexity than the assessments given to their typically developing peers. These "1 percent tests" have been aimed at students with severe cognitive disabilities. (The tests are formally known as "alternate assessments based on alternate achievement standards," or AA-AAS.)
The draft renewal legislation proposed by Sen. Lamar Alexander, a Republican from Tennessee who chairs the Senate education committee, would lift those caps, leaving it up to the states to decide how many students can be counted as proficient when taking these alternate tests.
The Consortium for Citizens with Disabilities' education task force—a coalition of more than 20 groups— said in a Jan. 21 letter that such a move would "essentially wipe out a decade of progress which has allowed parents, teachers and school leaders to better understand the potential of students with disabilities."