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Friday, May 26, 2017

Praising the Alabama Mandate

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

At The Gadsden Messenger, State Representative Craig Ford praises the Alabama Legislature for passing an autism insurance mandate.
According to the national Center for Disease Control, one out of every 175 children in Alabama has been diagnosed with some degree of Autism Spectrum Disorder. While treatment is most effective for children between ages two and nine, and coverage for children in this age range was already mandated by law, some children need further treatment going into their teenage years.
But the costs for Applied Behavioral Therapy treatment can be as high as $70,000 a year! So the legislature passed a new law that requires insurance companies to include in their group plans (defined as plans with 51 or more people participating) coverage for the treatment of children up to age 17.
This bill, which Gov. Kay Ivey has now signed into law, will improve the lives of thousands of children and their families. But it also shows what can be done when legislators work together.
Rep. Jim Patterson, R-Meridianville, worked tirelessly on this bill, and he didn’t make it a partisan issue. Rep. Patterson talked with Democrats and Republicans in both chambers of the legislature to come to a compromise that would limit the costs to insurers while still guaranteeing the coverage for our children.
As a result, this bill was passed out of the House with 102 votes in favor and not a single vote against it. In the state Senate, only one senator voted against it.
Another bipartisan success was our education budget. Budget chairman Bill Poole, R-Tuscaloosa, has always worked hard and listened to members of both parties when crafting the education budget. His tireless work has also led to unanimous support in the House for his budgets. And even more impressive is that he’s passed the education budget with unanimous support for three years in a row!
Both of these men have shown what can be accomplished when leaders reach across the aisle and work together instead of turning everything into a partisan issue.

Thursday, May 25, 2017

Trump Budget v. People with Disabilities

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

At The New York Times, Kathleen O'Brien writes:
President Trump’s budget is here, and it contains serious cuts to the social safety net. One of the big changes is a plan to slash more than $800 billion over the next 10 years from Medicaid.
You may think of Medicaid as a program for the poor, but it also helps a variety of other vulnerable populations. Children with special health care needs rely on the program for services not typically covered by private health insurance, which helps them stay at home with their families. There are about five million children with special health care needs who receive benefits through public health insurance programs, including Medicaid. Proposed limits on a per-person basis are expected to disproportionately affect these children and their families, limiting access to costly but necessary services.
My sweet son is in this category.
At AASA, Sasha Pudelski reports:
Medicaid permits payments to districts for certain medically necessary services made available to children under IDEA through an individualized education program (IEP) or Individualized Family Service Program (IFSP). Given Congress’s failure to commit federal resources to fully-funding IDEAix, Medicaid reimbursement serves as a critical funding stream to ensure districts can provide the specialized instructional supports that students with disabilities need to be educated with their peers. The National Alliance for Medicaid in Education estimates that 1 percent of all Medicaid reimbursement goes to local school districts (between $4-5 billion), which is roughly a quarter of the investment made in IDEA ($17 billion).
AASA asked school leaders to identify how their systems would be impacted by a 30 percent reduction in Medicaid funding. By far, the most common result is that students
with disabilities will be harmed.
Another way special education programs and students may be effected by a Medicaid cut is that without this funding stream, districts be at may risk for noncompliance with IDEA. School leaders note that compliance with one of IDEA’s central tenets, educating students in the least restrictive environment, would be substantially jeopardized by a funding cut. The ability of districts to supplement this funding stream with another federal funding stream—Medicaid—has made the difference in being able to provide
many services for students with disabilities and fully adhere to the requirements in IDEA. As this funding stream disappears at a time when IDEA funds comprise merely 16 percent of the additional cost of educating students with disabilities,xi district leaders are concerned they will be unable to meet critical IDEA mandates. Specifically, they   worry about how to guarantee a student is educated in the least restrictive environment and how to ensure students can access the professionals and supports they need to
achieve.

Wednesday, May 24, 2017

Trump Budget Cuts

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

From the Arc:
Today the Trump Administration released its first ten year budget proposal, and the numbers are devastating for people with intellectual and developmental disabilities (I/DD) and their families. On top of the more than $800 billion in Medicaid cuts already approved by the House of Representatives, the Trump Administration is planning for $610 billion in cuts to Medicaid; $72.4 billion in cuts to Social Security’s disability programs; and hundreds of billions more in cuts to other effective federal programs that are vital to people with I/DD.
“Where we invest our federal dollars is a measure of our values as a nation. Today the Trump Administration showed its cards, and coupled with the devastating Medicaid cuts already approved by the House of Representatives in the health care bill, the deck is stacked against people with disabilities.
...
“This budget – this Trump card – along with the health care cards being played in Congress as we speak, will dismantle decades of progress for people with disabilities and their families. So I’m calling on all advocates to do what they have done for decades, band together to put a face on these cuts. Share your story in your community and with your elected officials, and tell them to reject these cuts, before we go back in time to an era of discrimination and isolation,” said Peter Berns, CEO, The Arc.
In tandem with this budget news, The Arc is releasing a video which shares the story of a Maryland family which risks losing access to critical care for one of their children due to impending cuts to federal Medicaid funding. ...
From ASAN:
ASAN strongly condemns the deep cuts that the President’s proposed budget would make to Medicaid, Social Security, and other critical programs for people with disabilities. The President’s proposal would deprive countless Americans with disabilities of critical health care and community-based supports. It would jeopardize our very lives and result in a massive return to nursing homes and institutions. ASAN calls on Congress to reject these devastating cuts and craft a budget that invests in people with disabilities, our families, and our communities. We have come too far to go back.
The President’s budget would require massive cuts to Medicaid, which acts as a lifeline for countless people with disabilities. Medicaid is not only a critical source of health care coverage but also the main funder for home and community-based services and supports that help us live in the community instead of institutions. But the President’s budget takes the $800 billion in Medicare cuts proposed by the American Health Care Act and adds an extra $610 billion in additional cuts. This will reduce Medicaid funding by more than a trillion dollars over the next 10 years – a change that would cut the program in half.

This budget would eliminate $47 million for research on health care and services for autistic people and our families that was provided via the Autism CARES Act. These services include the Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) and Developmental Behavioral Pediatrics (DBP) programs which train healthcare professionals to work with autistic people. These cuts are in addition to $5.8 billion in cuts to the National Institutes of Health and $35 million in cuts to CDC work related to autism and developmental disability.
The budget would also cut Social Security at the same time that it cuts programs that help us find jobs in the community. It promises $50 billion in cuts to Social Security Disability. The only way to achieve such stark cuts is to kick people with disabilities off the program, through punitive and impossible-to-meet work requirements or other harsh changes which will result in people losing their Social Security. While ASAN has always supported programs to help people with disabilities find employment, these cuts aren’t designed to move people to quality jobs that help them escape poverty. In fact, the budget would also cut all Vocational Rehabilitation funding for state supported employment grants, which are instrumental in helping people with intellectual and developmental disabilities get and keep real jobs in the community.
Furthermore, it would punish SSI recipients for living together – including couples and families – by reducing their SSI payments. SSI programs already force people with disabilities to survive on an average of just $18 per day. Further cuts would force SSI recipients to choose between separation and starvation. To make it worse, the President’s budget would also make massive cuts to programs that are critical to people with disabilities living in poverty, including a $193 billion cut to the Supplemental Nutritional Assistance Program (SNAP), or food stamps program, over the next ten years; completely eliminating the Low Income Home Energy Assistance Program (LIHEAP) that helps low-income people pay their heating bills; and a $72 million cut to substance abuse prevention programs.
In addition to cuts to our health care and community-based services, our community would see a $25 million cut to programs to build affordable community-based housing for people with disabilities and a $7.7 billion cut to affordable housing programs overall. These cuts could cause over 250,000 people to lose the housing vouchers. The budget would eliminate the National Housing Trust Fund, which helps people with extremely low incomes escape or avoid homelessness. For thousands of people with disabilities who are already struggling to make ends meet, these cuts will mean homelessness or imprisonment in an institution.
Finally, this budget would cut smaller but vital programs that increase inclusion and independence for people with disabilities and our families. This budget would cut all federal funding for the Special Olympics, would eliminate programs that provide free legal assistance to people with low incomes, and would sharply reduce funding for State Councils on Developmental Disabilities, the National Institute on Disability, Independent Living, and Rehabilitation Research, and the Substance Abuse and Mental Health Services Administration. People with disabilities’ lives have value and are worth investing in. We deserve more than this.
When Congress threatened to cut Medicaid by over $800 billion, we showed up to fight. Congress heard from the disability community in town halls, and through countless phone calls, faxes, and letters. That fight isn’t over–but we can win, and we can beat these cuts too. We call on Congress to reject the President’s attack on the supports we need to live in the community. Our lives are too important to be put on the chopping block.

Tuesday, May 23, 2017

ABLE 2.0

The Politics of Autism includes a discussion of the ABLE Act.

Autism dad Eli Lehrer writes at The Hill:
Many families (mine included) have put money into conventional 529 college savings plans and would now like to move it into the more flexible ABLE Accounts. Under current law, that’s not possible without paying massive tax penalties. Moreover, while one of the law's goals was to help the disabled take jobs and lead more typical lives, the law doesn't raise limits to allow beneficiaries to deposit their own earnings into the accounts. Finally, people who develop severe disabilities later in life from accidents, adult-onset mental illness or conditions like Lou Gehrig’s disease can’t benefit from the ABLE Act at all.
A bipartisan legislative package—styled "ABLE 2.0" and spearheaded by House Republican Conference Chair Cathy McMorris-Rodgers (R-Wash.)—would address each of these flaws. It would allow rollovers of 529 plan balances into ABLE accounts; raise the limits for working disabled people with ABLE accounts to deposit more of their own earnings; and increase the eligible age to open an ABLE account to 45. It’s a package of commonsense measures that will make it easier for special-needs families to save for their children and for special-needs adults to have the resources they need to live better and more independent lives.

Monday, May 22, 2017

Autism: Disorder or Disability?

In The Politics of Autism, I write about pushback against the disease frame:
Another signal was a 2013 public apology by Easter Seals after it sent out a mass email using the disease frame:  “On Tuesday, we sent you an email about autism and we owe you an apology. We called autism an epidemic and some of you called us out on our language. You're right. Autism is not an epidemic. Autism is not a public health crisis.”  In the same vein, Los Angeles Times journalist Michael Hiltzik walked back from language that he used in a 2014 story.   “I have been taken to task, properly, for referring to autism above as `a terrible condition for its sufferers and their families.’ That's a narrow and ill-informed way of looking at a condition that many people on the autism spectrum feel has benefited their lives.” 

Simon Baron-Cohen weighs in at The Journal of Child Psychology and Psychiatry.  The abstract:
Should we continue to refer to autism as a ‘disease’ or ‘disorder’, or is the framework of ‘neurodiversity’ a more humane and accurate lens through which to view people with autism? Evidence at the genetic, neural, behavioural and cognitive levels reveals people with autism show both differences, and signs of disability, but not disorder. Disability requires societal support, acceptance of difference and diversity, and societal “reasonable adjustment”, whilst disorder is usually taken to require cure or treatment. These are very different frameworks. It will be important to see how the concept of neurodiversity is applied to the 300 diagnoses in DSM-5, and if it revolutionizes both the science and the practice of psychiatry.

Sunday, May 21, 2017

Measles, Antivax, and Prejudice

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  One consequence has been a measles outbreak within Minnesota's Somali community.

Saad Omer writes at STAT:
My colleagues and I assessed the risk of large measles outbreaks in the US. In a paper published in the American Journal of Epidemiology, we reported that approximately 12.5 percent of US children and adolescents are susceptible to measles. Moreover, we found that even a modest drop in the vaccination rate could result in the breach of the “herd immunity threshold” — that could result in breakdown of community level protection against measles.
When such outbreaks happen, it is often minority groups that get blamed for bringing disease into the country. For example during the so-called Disneyland outbreak of 2014-2015, multiple politicians expressed unfounded concerns about illegal immigrants bringing measles into the US. Then there is the not so proud history of blaming infectious disease importation and spread on ethnic and sexual minorities.
It is in this context that many of us in public health, who also believe in civil and human rights, worry about the Minnesota Somali-American community being blamed for something bigger than the current outbreak — even though the community itself has been a victim of an onslaught of propaganda and misinformation disguised as empathy.

Saturday, May 20, 2017

Alabama Governor Signs Autism Insurance Mandate

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Andrew J. Yawn reports at The Montgomery Advertiser:
Gov. Kay Ivey signed the autism insurance bill into law Friday at the Capitol, and afterward she was embraced by a few of the thousands of children the law will support.
Despite a late session effort to stymie the autism bill, it unanimously pushed through the House about 2 a.m. Thursday. Some concessions were made including an age cap and an exemption for business employing 50 people or fewer, but the law will make access to care easier for children on the spectrum whose applied behavior analysis (ABA) therapy will be covered by health insurance until the age of 18.
"The bill is real important," Ivey said. "This bill is about the quality of life of wonderful children, and I'm proud to sign this bill."
State Finance Director Clinton Carter's daughter Libby, 5, was one of the children on the spectrum to embrace Ivey after the signing.

Friday, May 19, 2017

Restraint and Seclusion: Statistics and Law

In The Politics of AutismI discuss the use of restraint and seclusion.  I also note the uncertainty of many of the statistics that the issue involves.

Christina A. Samuels reports at Education Week:
One out of every 100 special education students was restrained by school personnel or secluded in school from his or her peers in the 2013-14 school year, presumably to quell behavior that teachers considered disruptive or dangerous.
That means nearly 70,000 special education students were restrained or secluded in that school year, the most recent for which data are available. For most students, this happened more than once: States reported more than 200,000 such incidents, so on average, a special education student was restrained or secluded about three times.
These statistics, based on an analysis by the Education Week Research Center of data collected by the U.S. Department of Education's office for civil rights, represent the best national snapshot of these controversial practices.
The numbers are also, almost surely, dramatically understated.
...
[Michigan] Lt. Gov. Brian Calley, a Republican, led a commission that was asked to recommend reforms to the state's special education program. For that work, he traveled around the state to hear parents' concerns about restraint and seclusion.
"It's really unbelievable, some of the things I've heard," said Calley, who has a daughter with autism spectrum disorder. "The anecdotal evidence was just piling up that it was much more common than anyone cared to admit.
Lanette Suarez writes at The University of Miami Law Review:
Students with disabilities, especially students of color with disabilities, are disproportionately subjected to restraints and seclusion, impeding their access to an inclusive education. Further, “[s]tudents with disabilities make up 19 percent of those who receive corporal punishment, yet just 14 percent of the nationwide student population.” According to the Department of Education Office for Civil Rights, students with disabilities are 12% of the student population, but 58% of those subjected to seclusion or involuntary confinement.Further, even though they constitute only 12% of
the student population across the United States, students with disabilities represent 75% of those who are subjected to physical restraints at school to immobilize them or reduce their ability to move freely.
Similarly, disabled African-American students represent 19% of students with  isabilities, but 36% of the students who are restrained at school by mechanical restraints or equipment designed to restrict freedom of movement. These numbers show the significantly disparate use of excessive force, restraints, and punishment skewed toward
disabled children and disabled children of color in particular.
Significantly, these numbers may be inaccurate because of a fundamental problem: lack of reporting. In 2012, there were 163,000 instances where students were restrained (physically held down) according to federal data. Also, in 2012, students were placed
roughly 104,000 times in scream rooms and there were 7,600 reports of students being placed in mechanical restraints like handcuffs or straps. However, there is reason to believe even more cases exist especially for children with autism or those experiencing emotional and behavioral issues. These students are either too young, distressed, or too limited in their ability to communicate what goes on in school. Children with disabilities are especially vulnerable because they often have a history of behavioral problems, which may undermine their credibility when reporting abuse. In other situations, the child’s increased agitation can cause a “more forceful and longer application of restraint until the child succumbs and sometimes stops breathing.”Furthermore, many school systems fail to report all incidents to the federal government: “Fewer than one-third of the nation’s school districts reported using restraints or seclusions even once during the school year.” Thus, the number of students with disabilities that are subjected to restraints and seclusion as punishment could be significantly higher. Reporting the incidents could be a way to have the essential information to ascertain the problems and attempt to find a meaningful solution.

Thursday, May 18, 2017

Final Passage of Alabama Mandate

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Brian Lyman reports at The Montgomery Advertiser:
The Alabama House of Representatives voted 103 to 0 early Thursday morning for a an amended version of legislation that would require insurers to provide the therapies for children 18 and younger. The final version was somewhat less than what supporters initially sought, and includes an exemption from the mandate for businesses that employ 50 people or less.
But Rep. Jim Patterson, R-Merdianville, the bill's sponsor, said after the 2:08 a.m. vote Thursday that it was an important first step in allowing families with autistic children access to critical treatment.
"It's hard to be against children who need help," he said. "103 votes, that's pretty strong."
The bill goes to Gov. Kay Ivey.
At oanow.com, Cynthia Williford reports that the legislation could help keep behavior analysts in the state:
For years, John Rapp, Auburn University’s applied behavior analysis program director, has seen students who get their masters leave Alabama for better, higher-paying or simply available, jobs. And those jobs are often in the 45 other states where insurance reform bills have passed.

“We like to try to recruit people outside Alabama to come to our program with the hope that they’ll stay, but, without gainful employment, they will gravitate to wherever the jobs are,” Rapp said, the director of one of the highest rated programs in the country. “Suffice it to say that Alabama has not been one of the higher paying regions. That has contributed to it, and again, where there’s a lot of demand, there’s an opportunity to pay better salaries.”
Odessa Luna, a board certified behavior analyst (BCBA) and doctoral candidate at Auburn, said she has trained and knows several who have found better jobs elsewhere. If the bill were to pass, Luna said it would be a “huge appeal” to BCBAs.

Wednesday, May 17, 2017

Alabama Senate Passes Autism Insurance Mandate

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

At The Alabama Media Group, Mike Cason reports that the Alabama Senate has passed an autism insurance mandate.
The Senate passed the bill by a vote of 33-1. That sends it back to the House, which had passed it 100-0 earlier.
If the House accepts changes made by the Senate, it could send the bill to Gov. Kay Ivey.
Rep. Jim Patterson, R-Meridianville, the sponsor of the bill, said he will ask the House to accept the Senate changes. Patterson said he expects that to happen on Wednesday.
Key Senate changes include making the mandate apply only to companies with at least 51 employees, making the mandate apply only to services for patients up to age 18 and delaying the mandate on public insurance plans until Dec. 31, 2018.

Patterson said he was disappointed in the delay for those plans but said overall the bill was a "victory." He said the advocacy group Autism Speaks, which has lobbied for the bill, urged him to accept the Senate changes.
Parents and advocates say applied behavior analysis can be a life-changing therapy for children with autism. But it's expensive and can be out of reach for parents if not covered by insurance.
Sen. Cam Ward, R-Alabaster, said the insurance mandate would mean that more families would be able to receive the therapy, which benefited his daughter, Riley.

Tuesday, May 16, 2017

A Fox Apology

In The Politics of Autism, I discuss depictions of ASD in popular culture.   

Fox News has had a lot to apologize for lately.  The latest, as Brad Reed reports at Raw Story:
Fox News contributor Tammy Bruce on Tuesday issued a formal apology for mocking an 8-year-old autistic child by calling him a “snowflake.”
“I am so sorry to the family,” Bruce began. “My intention was never to hurt a kid and his mom. We had absolutely no idea Michael was on the autism spectrum, and as a gay woman and feminist, I’ve spent most of my adult life working to improve the lives of woman and children, and those who are disenfranchised.”



Bruce also pledged in the future to stop attacking children for political purposes, regardless of whether or not they have autism.

Bruce first criticized the autistic boy after he approached Vice President Mike Pence and demanded an apology after Pence accidentally hit him in the face. At the time, Bruce mocked the boy because video seemed to show that Pence had barely made physical contact with him while he was attending an event at the White House.

“I guess we’re giving birth to snowflakes now, because that looked like that kid needed a safe space in that room,” she said during a segment with Fox host Bill Hemmer. “It is a bit, the eight year-old pretty much stalked the vice president afterwards. He wasn’t even — the headlines said he was ‘hit, he was struck, he was smashed, he was bumped.’ The fabric on his sleeve touched his nose maybe. He stalks the vice president, says, ‘you owe me an apology.'”

Monday, May 15, 2017

Snake Oil

In The Politics of Autism, I discuss autism quackery

 David Robert Grimes, an Oxford physicist, writes at The Irish Times:
For as long as people have fallen ill, there are those who hawk dubious elixirs bereft of efficacy. In the late 1800s, Clark Stanley amassed a fortune with such an ointment, allegedly drained from the skin of rattlesnakes – which, in reality, consisted primarily of mineral oil.
Since then, “snake-oil” has become a catch-all term for ostensibly medical but utterly ineffectual concoctions. Yet even now snake-oil treatments remain resolutely popular, ranging from the merely useless to the actively harmful. The single contemptible trait uniting these diverse cure-alls is that they are inevitably pushed most aggressively upon the desperate and vulnerable, such as those diagnosed with incurable diseases, chronic conditions or terminal illness.
Children with developmental disorders are frequently targeted with unorthodox wares. In particular, families of autistic children are mercilessly pursued by purveyors of snake-oil, with potentially deadly results.
Miracle Mineral Solution is but one example of this. The innocuously named MMS is a product created by Jim Humble, a one-time Scientologist who more recently styles himself as archbishop of the Genesis II Church of Health & Healing.

Sunday, May 14, 2017

Mandate Bill Advances in Alabama

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Ben Bullard reports at The Cullman Times:
The Alabama Senate will vote this week on a mandate for insurers to offer coverage for intensive applied behavioral analysis (ABA) therapy, Senate President Pro Tem Del Marsh (R-Anniston) has pledged.
“We will have all day Wednesday to have debate on that bill,” Marsh said last week. “Our intent is to get an autism bill to the governor.”

The bill would require some insurers to cover ABA therapy, an intensive treatment that can cost $100 per hour — out of financial reach for many families. Business and insurance groups have voiced opposition to the proposed mandate, citing cost concerns.

...
Hostilities erupted among senators last Wednesday, shortly after the Senate budget committee approved the bill on a 14-2 vote. Committee Chairman Sen. Trip Pittman (R-Montrose) — who says he’s worried about costs to Medicaid and other state insurance programs — said afterward that he might hold the bill in committee by not reporting it to the floor in order to negotiate for changes.

After pushback from other lawmakers, he relented, but criticized the idea of mandating new, yet-to-be-tallied expenses.

“At the end of the day, we have to be able to pay for the costs of this, and there are a lot of unknown costs,” he said.

Saturday, May 13, 2017

Antivax Activists, Somali Minnesotans and Measles

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

Helen Branswell reports at STAT:
As of Monday, there were 48 confirmed cases of the highly contagious — and potentially deadly — infection, all but two in children under the age of 10. Of the sick, 45 had not been vaccinated against measles. And 41 of the patients are Somali Minnesotans.
[Fatuma] Ishtar, a community outreach worker in Minneapolis, blames the anti-vaccination lobby. “They are everywhere. Like, every event, every forum,” she said. “They continue to push the community. I feel offended by this group.”
Michael Osterholm, former state epidemiologist, goes further. Actually, he uses the verb “exploit.”
“What they say is, ‘Remember, measles is just a five-to-seven-day disease. Autism is forever,'” he said. Osterholm, however, knows the dangers of measles. He was the state epidemiologist in 1990, when Minnesota had a large measles outbreak — 460 cases in Minneapolis and St. Paul.
Three children died.
Christopher Mele reports at The New York Times:
Mohamud Noor, executive director of the Confederation of Somali Community in Minnesota, said anti-vaccine activists had met one-on-one with families and had been more aggressive than public health educators in getting their message out.
Though the medical research has debunked the connection of vaccines to autism, the notion is deeply rooted in the community, Mr. Noor said on Friday, adding that the “main fight” was combating that perception.
The Washington Post reported Friday that the fear was so entrenched that parents in the community believe the risk of measles is preferable. The Post reported that one of the anti-vaccine movement’s founders, Andrew Wakefield, was among those who had met with the parents. Asked if he felt at fault for the outbreak, he replied: “I don’t feel responsible at all,” according to The Post.
In 2014, the United States had a record number of measles cases — 667 — since the disease was thought to have been eliminated in 2000. Nearly 400 of them occurred in unvaccinated Amish communities in Ohio.

Friday, May 12, 2017

"Ask an Autistic Person"

In The Politics of Autism, I write:
Arguing that autistic people themselves are the main stakeholders, groups such as ASAN have called for increasing this representation.[on IACC] They also argue that too much autism research spending goes to the “disease frame” and that no enough goes into improvement of services and the quality of life. In 2010, for instance, only 16 percent went to services and only 2 percent went to “lifespan issues” (e.g., the needs of adults on the spectrum).
John Elder Robison writes at STAT:
There’s a widespread view that autistic people need to “get scientists to listen to us,” and that “scientists need to stop ignoring autistic people.” That hasn’t been my experience at all. I first got involved with autism science when researchers from Harvard and the University of Washington tracked me down following the release of my first book and asked for my perspective on proposed work. Since then, autism scientists have welcomed me into their groups, answered my questions, sought my advice and paid attention to it.

Ten years ago, the director of the National Institutes of Mental Health invited me to serve our government in a similar capacity. With his support, and the encouragement of others in government, I have been proud to do that. Since then, I’ve been joined in this work by other autistic people. We’ve discussed hundreds of proposed research studies, and it has been gratifying to see some of them funded, with our ideas and suggestions integrated into research.
A larger movement now aims to recruit more so-called autistic advisers, and to encourage every researcher to seek input from autistic people when structuring studies. “Ask an autistic person,” has become a common refrain in the autism science community.

Autism and Health

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

A release from Autism Speaks:
Autism Speaks today issued the first in a series of annual, in-depth reports on special topics in autism. Autism and Health: Advances in Understanding and Treating the Health Conditions that Frequently Accompany Autism gathers into one comprehensive report the most authoritative research and the latest guidelines on treatment and support of children and adults with autism spectrum disorder.
The last decade has brought tremendous advances in understanding and addressing the many physical and mental health conditions that often go hand-in-hand with autism. Those conditions include epilepsy, gastrointestinal distress (GI), sleep disturbances, eating and feeding challenges, attention deficit and hyperactivity disorder (ADHD), anxiety, depression, schizophrenia and bipolar disorder. These issues can extend across the life span.
While each new piece of high-quality research adds to our understanding of autism, it also adds to the complexity of developing the best practices to address the diverse needs of the autism community.
Health problems attributed to autism may instead be symptoms of a different condition - one that is treatable. For example:
  • Children with autism are almost 8 times more likely than typical kids to have chronic GI distress. The report includes expert guidance on when to seek help for "picky eating," which could be a sign of GI problems.
  • More than half of people with autism have sleep disturbances, which may contribute to daytime behavioral problems. A model parent-education program teaches autism-specific sleep guidelines.
  • 30 to 60 percent of people with autism have symptoms of ADHD. Research shows that personalized treatment with cognitive-behavioral techniques adapted for autism may help.
The special report's Facts and Figures Supplement provides data on prevalence, screening and diagnosis, the cost of services and treatment, adult needs, and funding for research, among other categories.
"We now know more about autism than ever before, but each new piece of research paints an even more complex picture of the disorder," said Thomas Frazier, PhD, Autism Speaks chief science officer. "For the first time, our report pulls together the most up-to-date research on autism, and presents it in easy-to-understand terms. We hope people with autism, parents, communities, and health care providers will use this information to make the best possible decisions for their particular needs and to enhance the quality of life, now and in the future."
###
Autism and Health: Advances in Understanding and Treating the Health Conditions that Frequently Accompany Autism is available at http://www.autismspeaks.org/specialreport.

Thursday, May 11, 2017

GAO Report on Transition and the Federal Bureaucracy

The Politics of Autism explains that autism services can be complicated, creating difficulties for autistic people and their families.  

The Government Accountability Office has a new report titled "Youth with Autism: Federal Agencies Should Take Additional Action to Support Transition-Age Youth."  The summary
According to GAO’s nationwide survey of school district special education directors, GAO estimates that about 85 percent of districts in school year 2015- 16, provided youth with Autism Spectrum Disorder (ASD) services such as instruction on life, social, and behavioral skills, as they transition from high school to adulthood. ASD is a group of complex developmental disorders characterized by difficulties with social interactions, communication, and repetitive behaviors. Districts provided these services as part of the planning for the transition to adulthood required by the Individuals with Disabilities Education Act (IDEA). Fewer, though still a majority of, districts reported providing certain types of employment-related supports. For example, GAO estimates that 69 percent provided work experiences and 63 percent provided job coaching. While the majority of districts reported providing transition services to students with ASD, the services provided varied by factors such as the size and poverty level of the district, according to GAO’s analysis of survey responses.
Youth with ASD face key challenges transitioning from high school to adulthood, such as untimely transition planning by school districts, complex adult service systems, and lack of job opportunities, according to stakeholders. IDEA requires districts to begin providing transition services when students with disabilities reach age 16, with the option to start earlier. However, according to GAO’s prior work and stakeholders GAO interviewed, providing discretion in this area may not serve some students well. School officials, advocates, and others report that earlier transition planning—with age 14 commonly cited—can have multiple benefits such as allowing more time to obtain important work and academic experiences; however, the Department of Education (Education) is not funding research on the appropriate age to begin transition planning. Unless Education, which administers IDEA, examines the merits of earlier transition planning, policymakers may not have critical information when considering changes to IDEA. Currently, about 32 percent of districts begin transition planning when students are older than age 14, according to GAO’s analysis of survey responses.
While the Department of Health and Human Services’ (HHS) Interagency Autism Coordinating Committee (IACC) has facilitated collaboration across its member agencies, including Education, to support research for transition-age youth with ASD, it has missed opportunities to collaborate with relevant nonmember agencies. Specifically, the Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 calls for the IACC to include in its strategic plan, as practicable, services for individuals with ASD. However, HHS has not regularly engaged certain federal agencies that provide services or financial assistance to transition-age youth with ASD, but are not IACC members, such as the Departments of Labor and Housing and Urban Development. These agencies are not part of working groups tasked with updating the current strategic plan nor has HHS invited them to join the IACC. As a result, IACC may continue to miss opportunities to leverage the knowledge of other agencies—a leading practice for effective federal interagency collaboration—as it works to fulfill its expanded responsibilities under the Act and improve the well-being of individuals with ASD.

Wednesday, May 10, 2017

Work and Neurodiversity

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

Susanne M. Bruy√®re writes at the blog of the Department of Labor:
Launched in 2013, SAP’s groundbreaking Autism at Work program set a corporate goal of employing 650 employees on the autism spectrum by 2020 across a wide range of job categories. One of the first steps has been changing the way the company interviews people with autism, offering something more akin to a trial work period rather than just structured interviews.
“Out of a hundred resumes I would send, I would only get one response back. And when I did apply, because I was a bit monotone or stiff during the interview, they overlooked me,” says Patrick, a current SAP employee on the autism spectrum whose life was changed by the Autism at Work program. Today, Patrick works as an IT project associate, having joined SAP through the successful program that has employed nearly 120 colleagues in nine countries.
SAP is not alone. Earlier this month, the company jointly hosted an event with the support of the Olitsky Family Foundation, the Stanford University Autism Research Center and my organization, Cornell University’s School of Industrial and Labor Relations. The Autism at Work Summit showcased how companies have implemented programs to harness the power of the untapped talent pool of adults on the autism spectrum, such as through initiatives at Microsoft, EY and Hewlett-Packard Enterprise. In fact, the ILR School’s K. Lisa Yang and Hock E. Tan Institute on Employment and Disability has proudly partnered with HPE to facilitate the distribution of materials to help interested employers globally develop initiatives to provide skilled employment opportunities for job seekers on the autism spectrum.
We were also very pleased to be joined at the summit by colleagues from the Department of Labor’s Office of Disability Employment Policy, because these companies’ experiences have broader implications, providing meaningful insight into workplace policies and practices that facilitate success for all employees, including those with disabilities. One clear example was a reaffirmation that matching job candidates’ skillsets to open jobs leads to better business outcomes

Tuesday, May 9, 2017

NIMH Research and Transition


Joseph Gordon, director of the National Institute of Mental Health, writes at the NIMH website:
While continued research on interventions and services for young children with ASD is crucial, research on the needs of transition-age youth and adults with ASD is equally important. Despite this clear need, we know relatively little about how best to support individuals with ASD as they transition to adulthood. Postsecondary education and vocational training, supported employment, appropriate residential opportunities, continued development of social skills, and access to services and supports, including psychosocial interventions and technological supports, are all thought to be helpful to transition-age youth and adults. Nonetheless, the evidence base in support of these approaches is lacking, and precisely how best to meet the needs of transition-age youth and adults this need is unclear.
The NIMH is investing in research to remedy this lack of information. The ServASD initiative is funding efforts to develop and test the effectiveness of community-based interventions that can be delivered across a variety of service systems to improve functional and health outcomes of individuals with ASD throughout the lifespan, including the transition from youth to adulthood. These strategies take into account the structure and staffing of the service setting, such as educational, vocational, healthcare, and independent living programs, to ensure that, should the interventions prove effective, they can be delivered consistently and sustainably. Projects funded are aimed at developing and testing models for the delivery of needed services, including screening services, early intervention, transition services, and services for adults that target employment, social relationships, housing, and independent living.
Following up on the first successful round of ServASD grants, the NIMH issued two new funding announcements aimed at services for transition-age youth (RFA-MH-17-200 ) and adults (RFA-MH-17-205 ) with ASD. These announcements specifically target innovative models to help youth transition to adult supports and optimize the independence and functioning of adults with ASD.
The NIMH of course does not stand alone in the effort to improve the health and well being of individuals on the autism spectrum. As noted above, most of our research investments are complemented by significant investments made by our sister NIH institutes. Moreover, the Interagency Autism Coordinating Committee (IACC), of which I serve as chair, is tasked with ensuring that all government agencies that are involved in autism research and service efforts work together towards common goals. The IACC is responsible for creating and updating a government-wide strategic plan for ASD which addresses both research and services issues. The committee is in the midst of revising this plan, which should be completed within the next few months. Implementation of evidence-based practices for ASD interventions and services for all people on the autism spectrum is a recurring theme throughout the upcoming IACC Strategic Plan.
Efforts to develop and make appopriate interventions, supports and services available to individuals with ASD and their families are every bit as crucial as the efforts to understand the underlying biology I highlighted in my last message. For while increased understanding promises the possibility of transformative treatments in the future, we must also work to help those struggling now. NIMH and our partner institutes at NIH are committed to ensuring progress towards both short term and long term goals focused on addressing the needs and improving the lives of those living with ASD.

Monday, May 8, 2017

New Jersey and Prevalence Data

In The Politics of Autism, I discuss prevalence and talk of an "autism epidemic."

David Matthau reports at New Jersey 101.5:
New Jersey has the highest rate of autism of any state in the nation, according to the Centers for Disease Control — but advocates say that’s in part because we screen for it more.
“One in 41 8-year-olds have autism here in New Jersey,” said Suzanne Buchanan, executive director or Autism New Jersey. Autism affects a person’s ability to socialize with other people, and it gives people a restricted range of behaviors, interests and activities.
Buchanan said there are a number of reasons why New Jersey’s autism rates are so high.
“They can pretty easily be explained by the way the research is done and the reports that the researchers had access to,” she said. “Here in New Jersey we have access to both educational and health records, so if you expand the pool of kids that you’re screening, you’re going to find more kids.”

Sunday, May 7, 2017

Measles and Somalis

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

Lena Sun reports at The Washington Post:
Salah [Suaado, Somali immigrant mother of children with measles] no longer believes that the MMR vaccine triggers autism, a discredited theory that spread rapidly through the local Somali community, fanned by meetings organized by anti-vaccine groups. The activists repeatedly invited Andrew Wakefield, the founder of the modern anti-vaccine movement, to talk to worried parents.
 Immunization rates plummeted, and last month the first cases of measles appeared. Soon there was a full-blown outbreak, one of the starkest consequences of an intensifying anti-vaccine movement in the United States and around the world that has gained traction in part by targeting specific communities.
Uncertainty is a major theme of my book.  Although we know that vaccines do not cause autism, we are not yet certain about what does cause it.  And this uncertainty, in turn, gives rise to myths, misinformation, and conspiracy theory.  Sun writes in the same vein
While scores of studies from around the world have shown conclusively that vaccines do not cause autism, that is often not a satisfactory answer for Somali American parents. They say that if science can explain that vaccines do not cause autism, science should be able to say what does.




Saturday, May 6, 2017

AHCA and Autism

In The Politics of Autism, I discuss the ways in which health insurance does and does not help autistic people.

A Thursday release from the Autistic Self-Advocacy Network:
The Autistic Self Advocacy Network (ASAN) condemns today's vote by the House of Representatives to pass the American Health Care Act (AHCA). The AHCA, if passed by the Senate, would slash Medicaid supports for Autistic adults and others with disabilities. It would also make health insurance unaffordable for millions of Americans with pre-existing health conditions, including autism 
No amount of backroom wheeling and dealing has changed the fact that, like earlier versions, this version of the AHCA would eliminate the federal government's commitment to pay its fair share of the costs of the Medicaid program. This would lead to $880 billion less in federal funding for Medicaid programs over the next ten years. 10 million Americans with disabilities, including autistic children and adults, depend on Medicaid for basic health coverage. Medicaid also provides in-home supports to millions of Americans with disabilities who would otherwise be forced to move to an institution. These devastating cuts to Medicad mean that states will be forced to slash Medicaid coverage, especially coverage for the long-term services and supports that allow us to remain in the community.
The AHCA would also allow health insurance companies to impose dramatic price hikes for people with pre-existing conditions, such as autism and other diagnoses associated with autism like psychiatric disabilities and epilepsy. States could also chose to let insurers charge more for or stop covering essential health benefits, like emergency room coverage, preventative care, or speech and occupational therapy–services people with disabilities depend on to live good lives. Those who cannot afford these increased premiums will be forced into separate “high-risk pools,” even though high risk pools have never been able to provide adequate coverage at affordable rates for people with disabilities. This bill will devastate millions of Americans, including the disability community and including autistic people across the country. It must be stopped.

Friday, May 5, 2017

Transition to Adulthood

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

At HHS  Robin Harwood, Health Scientist and Tom Novotny have a blog post titled "Youth With Autism Spectrum Disorder Transitioning To Adulthood."
Fifty years ago, when I was an 8-year old child, autism was believed to be uncommon, with only 1 child in every 2 or 3 thousand receiving such a diagnosis. It was probably the last thing a teacher or parent thought of when they observed what they may have thought was a socially awkward child trying to navigate the complex hierarchies of the classroom and playground.

Today, with improved national awareness and greater ability to identify and diagnose children with what is now called Autism Spectrum Disorder (ASD), we know far more about how ASD manifests itself and how common this condition is. ASD involves impairment in social interactions and restricted or repetitive behaviors and interests. Its manifestations can range widely from mild to very extensive. Only about one-third of children with ASD have an intellectual disability. About one-quarter fall into the below-average range, while nearly one-half are average or above average intellectual ability. Unfortunately, this means that many children with ASD may not qualify for special education services because they are within the typical range academically or because they do not present with any specific behavioral problems.
In 2000, about 1 in 150 children was identified as having ASD at the age of 8 years; by 2012 (the most current estimate), this had risen to 1 in 68, in large part due to improved diagnostic tools and awareness by health and education professionals. It is not surprising that we are now experiencing a surge of young people with ASD transitioning to adulthood. Based on U.S. Census data and ASD prevalence estimates, over a half million youth with ASD will turn 18 over the next decade. Unfortunately, they are entering a health and social service system that is largely unprepared for them, one that often lacks many of the resources that youth with ASD need for a successful transition to adulthood.

New and expanded models of service and health care delivery are needed that ensure coordinated and comprehensive care across what have traditionally been different service systems. For children, the educational system provides most supports for those with ASD, but for adults, the health and social services available are more complex and not often specific to the needs of persons living with ASD.
It is vital that supports and services be comprehensive, coordinated and individualized to each person’s needs. For example, in addition to medical care, one young adult with ASD may need vocational rehabilitation services and assistance with independent living, whereas another may particularly need behavioral health care and social skills supports for the workplace.
An important consideration for the transition period is anticipating individual health care needs. Recent research has revealed relatively poor health outcomes over the lifespan among adults with ASD, finding that when compared with the general population, those with ASD:
  • Die an average of 16 years earlier;
  • Are 40 times more likely to die prematurely of a neurological condition (such as epilepsy) if they also have an intellectual disability;
  • Are nine times more likely to die from suicide;
  • Are at heightened risk for conditions such as depression and anxiety; and
  • Are at higher risk for other non-communicable diseases, including type 2 diabetes and heart disease.
The need for improved individualized planning, access to support services, and specialized health care through the transition period to adulthood and beyond is vital for improving the health outcomes and community integration for youth with ASD.
Currently, only about 1 percent of autism research, both private and publicly funded, is devoted to ASD in adulthood, including the transition to adulthood. More research on transition issues, as well as development and evaluation of models of appropriate care and service delivery, are an urgent public health need, as a half million youth with ASD will become adults over the next decade.

To learn more about Autism Spectrum Disorder visit HHS.gov/autism.