An Incident in North Miami

In The Politics of Autism, I discuss interactions between first responders and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand.

Francisco Alvarado, Michael E. Miller and Mark Berman report at The Washington Post:

Authorities said Thursday that they were investigating a shooting Monday in which a police officer shot a man who had said his hands were empty and raised at the time.

While the shooting was not captured on camera, a recording showing moments before the gunshots depicted a man lying on his back on the ground, his hands in the air, while another man sits near him cross-legged.

“All he has is a toy truck in his hand,” Charles Kinsey, the man lying on his back, yells at two police officers standing behind telephone poles just a few dozen feet away on Northeast 14th Avenue. “That’s all it is. There is no need for guns.”

Police said they only learned later that Kinsey worked at a care facility and that the man sitting near him was autistic.

After the recording stopped, one of the officers fired three shots, hitting Kinsey at least once in one leg.

[The Post’s police shootings database]

“When it hit me, I’m like, I still got my hands in the air,” Kinsey, an African American, said in an interview from his hospital bed with WSVN TV.

Police have not said why the officer fired, although a police union representative said Thursday that the officer, who has not been identified and who has been placed on administrative leave, was aiming for the man with autism — apparently thinking he was armed — and was trying to protect Kinsey.

IEP and Retaliation

In The Politics of Autism, I write about IEPs:

These meetings can turn nasty, and many autism parents have “IEP horror stories.”  One parent told me that she tried to ease tensions by bringing cookies to the meeting.  The principal then shouted to his staff, “Nobody touch those cookies!”  Another parent writes of asking for a sensory diet, a personalized activity plan that helps the student stay focused (e.g., low noise levels for those with a sensitivity to sound).  “After just proclaiming she is extremely knowledgeable about Asperger’s Syndrome, from the mouth of a school psychologist after we suggested our son needed a sensory diet. `Our cafeteria does not have the ability to provide this.’” 

EducationAdmin Web Advisor reports:

The Hampton City Schools system in Virginia must make amends after the Department of Education’s Office for Civil Rights (OCR) determined that the school system had unlawfully retaliated against a parent by demanding that she be fired from her job for advocating on behalf of her daughter, a special needs student in one of the system’s elementary schools. The parent was fired by her employer, a contractor for Hampton City Schools, after the school system informed the contractor it did not want the parent working with its schools.

Prior to that adverse employment action, the parent had complained about the adequacy of her daughter’s Individualized Education Program (IEP). School officials contend that some of the parent’s demands were unreasonable, including requests to schedule IEP meetings outside of school and working hours. The student’s principal also alleged that the parent “verbally attacked” staff members at an IEP meeting and accused one staff member of a breach of confidentiality. However, the parent’s employer judged her work performance to be satisfactory, leaving OCR to conclude that the termination of her services was attributable to her advocacy on behalf of her child.

Such a retaliatory action, said OCR, violates the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990, both of which prohibit discrimination against disabled individuals by public entities, including public education systems, and make it unlawful to retaliate against an individual for the purpose of interfering with any right or privilege secured by these laws.

To remedy its conduct, the Hampton City Schools agreed to take several corrective actions, including amending its policies to prohibit retaliation, posting notices of its anti-discrimination policies and complaint procedures, and providing training to school administrators on retaliation.

Read OCR findings letter

More Spending on Home and Community-Based Services

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

A report by Truven Health Analytics for the Center for Medicare & Medicaid Services finds that total federal and state Medicaid long-term services and supports (LTSS) spending was about $152 billion in federal fiscal year (FY) 2014, a 4.0 percent increase from the previous year.

The percentage of Medicaid LTSS attributable to HCBS [home and community-based services] continued to increase in Federal Fiscal Year (FY) 2014, one year after HCBS accounted for a majority of Medicaid expenditures for the first time. The percentage of total LTSS spent on home and community-based services (HCBS) increased from 51.3 percent in FY 2013 to 53.1 percent in FY 2014. The shifting balance was caused by a 7.7 increase in HCBS spending, from $74.9 billion to $80.6 billion. Institutional service  spending was flat, with only a 0.2 percent increase from $71.1 billion to $71.2 billion.

The percentage of LTSS expenditures for HCBS continued to vary across population groups. HCBS accounted for 75 percent of spending in programs targeting people with developmental disabilities, compared to 41 percent of expenditures for programs targeting other large population groups: older people or people with physical disabilities, and people with serious mental illness or serious emotional disturbance. HCBS spending for all three populations increased relative to institutional services in FY 2014, but the historical differences in HCBS spending across the groups remained.

Legislation on Special Needs Trusts

In The Politics of Autism, I discuss special needs trusts.

A July 14 release from Rep. Glenn "GT" Thompson (R-PA):

This week, the U.S. House Energy and Commerce Committee unanimously approved H.R. 670, the Special Needs Trust Fairness Act, which was introduced by U.S. Rep. Glenn ‘GT’ Thompson (PA-5). The legislation removes arbitrary legal barriers that prevent individuals with disabilities from independently creating Special Needs Trusts.

“Mr. Thompson is to be commended for the masterful way he has lined up bipartisan support for this important law to benefit persons with disabilities,” said Amos Goodall, of the State College based law firm Goodall & Yuchak, P.C. and public policy advocate for the National Association of Elder Law Attorneys (NAELA). “It is an example of his concern for persons who are less fortunate that has been the cornerstone of his activities throughout his career.”

Under current law, disabled individuals are required to have a legal guardian or the courts create a special needs trust on their behalf, regardless of whether or not they have the capacity to establish their own. This mandate can result in burdensome legal fees and extended wait periods in creating trusts—valuable tools that are often used to supplement daily living and care expenses when government benefits alone prove to be insufficient.

“I am pleased that the Energy and Commerce Committee took an important step toward correcting a legal inequity,” Thompson said. “This is a fundamental issue of equal protection under the law. We must safeguard the right of Americans living with disabilities to secure their future financial stability.”

Ari Ne'eman to Step Down

In The Politics of Autism, I write:

In 2006, 19-year-old Ari Ne’eman, who had a diagnosis of Asperger’s, cofounded the Autistic Self Advocacy Network (ASAN) in response to what members saw as the absence of autistic voices in policy debates on autism. As a motto, the group adopted a saying from the broader disability rights movement, “Nothing About Us Without Us.” ASAN gained national publicity in 2007, with a successful campaign against billboards by the NYU Child Study Center depicting autism as a kidnaper. The ads, said the group, stigmatized people with autism by suggesting that their condition was hopeless. Although billboards appeared only in New York City, the response was nationwide. ASAN used the Internet to join forces with other disability rights organizations and gather thousands of petition signatures.

Ne'eman writes at  ASAN:

At the beginning of 2017, in five months time, I will be passing the Presidency of ASAN on to Julia Bascom, the organization’s current Deputy Executive Director and leaving the ASAN staff to contribute to the disability rights movement in new ways. Since joining the organization in 2012, Julia has played a critical role in building ASAN’s leadership programs along with other important aspects of our advocacy work and community programming. She already plays a central role within ASAN’s ongoing work, and I am very confident that the organization will grow and prosper in new and interesting ways under her leadership.

I’m convinced that this is the best way to help ASAN take the next steps into the future. Every organization requires periodic changes in leadership, and I am excited to be handing ASAN over to an excellent successor who will continue to grow it in line with the values and energy that have built us into what we are today. I am looking forward to being a part of new projects and continuing to build our movement in other roles.

This transition has been long planned. Our board was notified at the beginning of this year, and I have worked closely with the ASAN senior staff to ensure a smooth transition will take place at the end of December. Over the next five months, we will continue to work to ensure that ASAN’s important work continues to thrive and grow. As I move on to new things, I will nonetheless remain a member of the ASAN board of directors.

Wandering

The Politics of Autism discusses the problem of wandering, which is the topic of legislation before Congress.

Reporting on Senate passage of Kevin and Avonte's Law, Samantha Finch offers writes at Parent Herald about wandering:

A 2015 study found that 27 percent of children with developmental disabilities such as autism wander away from safe locations annually. That same year, 31 people with autism died after wandering to unsafe environments, 1011 Now reported.

Another study published in 2012 by the American Academy of Pediatrics found that 24 percent of autistic children were in danger of drowning after going missing and 65 percent were vulnerable to traffic injuries and accidents. According to the National Center for Missing & Exploited Children, autistic children wander away when they get overly stimulated by sights, sounds, or other people's activities.

When this happens, the desire to escape propels autistic children to wander away to small or enclosed spaces. Another reason why they wander is because they are interested in a specific location such as bodies of water.

An Incident in Burbank

In The Politics of Autism, I discuss interactions between first responders and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand.

Leanne Suter reports at KABC-TV:

A local family was outraged Friday after a 16-year-old boy with autism was tasered by police during a traffic stop in Burbank.

 Fighting back tears, a 16-year-old autistic teen waited to be booked on charges he assaulted a Burbank police officer during a violent encounter.

 "This has been a devastating experience seeing my child on the ground, being tased by a police officer...worst moment of my life," said mother Tawnya Nevarez.

It happened last Friday at the intersection of Hollywood Way and Burbank Boulevard.

The officer pulled Tawnya Nevarez over because her son, whom the family does not want to name, wasn't wearing a seat belt.

They said he became agitated during the stop, and his mother told the officer he was autistic. It ended with the teen being tasered and sent to the hospital.

 "There's no reason that a routine traffic stop with a 16-year-old autistic kid should ever end with that kid on the ground being tased, being pepper-sprayed and having a seizure," said the family's attorney, Areva Martin.

Police said the teen attacked the officer, who was wearing an audio recorder, hitting him in the head and body.

Kevin and Avonte's Law Passes Senate

The Politics of Autism discusses the problem of wandering, which is the topic of legislation before Congress.

John Nikodin reports at WABC-TV:

The Senate on Thursday unanimously approved a bipartisan bill that aims to safeguard individuals with autism and other conditions.

Originally introduced last March by Sen. Chuck Schumer, D-NY, Sen. Thom Tillis, R-NC, and Sen. Chuck Grassley, R-IA, the bill is designed to improve autism education and training to proactively prevent wandering and to help locate individuals with the condition when needed.

The bill, known as Kevin and Avonte's Law, was named in honor of 14-year-old Avonte Oquendo, who wandered from his school in Queens and drowned in the East River in 2014, and 9-year-old Kevin Curtis Willis who drowned in the Raccoon River in Iowa in 2008.

Before the bill becomes law, the House of Representatives will have to vote to approve it, followed by the President signing it into law.

Information and Choices

In The Politics of Autism, I describe the difficulties of finding reliable information:

One problem is that a good deal of the solid research about autism lies in academic journals behind an Internet paywall, open only to people who have a university library card or can afford the journals’ exorbitant prices ($35 or more per article). Says neuroscientist Sophia Colamarino: “In today’s information age, where essentially anything said by anyone can be made accessible within a matter of moments, it is unfortunate that families have easy access to all BUT the most scientifically valid information, that which can be found in scientifically reviewed research literature.” NIH and Autism Speaks have tried to remedy this situation by requiring its research grant recipients to put any resulting peer-reviewed research papers on the PubMed Central online archive, but this policy affects only a fraction of the literature on autism.

Sarah C. Bauer, Megan Y. Roberts write at Scientific American:

While we understand why complementary and alternative treatment options are compelling, we cannot in good conscience endorse their use. Ultimately, quality, evidence-based interventions will be most effective for helping their child. Thus, we need to bridge the gap by increasing efforts to make those options more accessible to families of all financial means and geographic locations.

Further, since complementary and alternative methods are growing in popularity, to better help families make the right decisions, clinicians need to create an open, non-judgmental space that includes a dialogue about these different paths of intervention. They cannot dismiss complementary and alternative ones out of hand or make parents feel bad for considering or using them. They do need to respectfully discuss the risks and benefits of possible treatments, suggest what may be most effective, and then partner with parents to monitor their child’s progress.

Researchers and clinicians also can help parents and caregivers make more informed decisions by making their study findings more accessible, both on- and offline. Of course, this is easier to do when clinicians and researchers, like us, work together. For instance, Dr. Roberts and her colleague, Dr. Kaiser, at Vanderbilt University studied early interventions for young children with language delays and found preliminary evidence supporting the benefits of caregiver involvement in the children’s therapies. Now this research informs how Dr. Bauer counsels the parents of children in her clinics. When they inquire if they should be involved in their children’s therapies, she can point to this research to say that there is evidence that it can be beneficial for them to be part of it.

Autism Quackery in the UK

In The Politics of Autism, I discuss autism quackery.

At The Guardian, Dr. Frances Ryan writes about Emma Dalmayne's campaign against a risky "cure."

Dalmayne, a stay-at-home mother and autism campaigner from London, is describing Miracle Mineral Solution (MMS), a “supplement” being sold online to parents as a “cure” for their autistic children. But MMS is essentially bleach. It is 28% sodium chlorite, and when used as instructed, generates chlorine dioxide – a potent bleach that’s used to strip textiles and for industrial water treatment.

It is highly dangerous to ingest. Taken directly, MMS can cause severe nausea, vomiting and diarrhoea, damage to the gut and red blood cells, respiratory problems, and can be fatal. “MMS can cause serious damage to health and in some cases even death,” says a spokeswoman for the Food Standards Agency (FSA). “Anyone who has bought these products is advised to throw them away.”

Dalmayne – who has two children with autism and three others under assessment for diagnosis, and has autism herself – first became aware of the fake cures in 2014, after setting up an autism support group online. “Parents would ask me, have you seen this? Isn’t it awful? Or, does it work?” she says. Over the past 18 months, the 40-year-old has found dozens of websites selling MMS under the guise of curing autism, as well as GcMAF, an unlicensed product derived from blood plasma that claims to treat autism as well as cancer and HIV.

There are no figures on how widespread the manufacture and use of fake autism cures are in the UK, but the FSA says local authorities have made it aware of a number of cases where MMS has been marketed for sale. And the Medicines and Healthcare products Regulatory Agency confirms it is investigating GcMAF products after it found manufacturing conditions were “unacceptable” and the material “unsuitable for human use”. Last year, more than 10,000 vials of GcMAF were seized at a production site in Milton, Cambridgeshire, with the product being sold on various European websites that UK citizens may have bought from.

How Much Good Do Insurance Mandates Accomplish?

In The Politics of Autism, I explain that state insurance mandates do not have the impact that many people would like. For one thing, they do not apply to self-funded plans.

Another limitation of the state mandates stems from the Affordable Care Act. The law seeks to discourage state mandates that exceed its “essential health benefits” requirements. If a state has passed a mandate since 2011 that applies to individual and small group plans, it has to pick up the additional premium cost. In about half of the states, autism coverage is part of essential health benefits, usually because the state mandated coverage before 2012 and thus it became part of that state's “benchmark” plan. Says Lorri Unumb: “For the most part, the states that have passed autism mandates post Dec. 31, 2011, have excluded ACA-compliant plans from the mandate.”

The details of insurance mandates vary from state to state. Many have age limits and caps on what insurers have to pay. Because the Affordable Care Act forbids annual dollar limits on essential health benefits, insurers in these states may be able to convert these limits into non-dollar limits (such as a cap on the number of ABA sessions each year). Unumb writes of a visual aid that she and her husband designed: “We set to work designing a double-wheel that would show the 50 states on the big outer wheel and the various types of health insurance on the inner wheel. Only if you’re lucky enough while spinning both wheels do you get coverage for the treatments your child needs.”

Kimberly Leonard reports at US News:

State laws that require heath insurance companies to cover autism treatment still aren't reaching the vast majority of children with the disorder, suggests a study published Monday in JAMA Pediatrics.

The study found that in states without insurance mandates, the treated prevalence of autism was 1.6 per 1,000 children, compared with 1.8 per 1,000 children in states with insurance mandates. While the difference represents an increase in treated prevalence of 12.7 percent, the higher total still makes up only a small fraction of the Centers for Disease Control and Prevention's estimate of 15 in 1,000 children who have autism.

Still, it is difficult to tell precisely how widespread the problem is. Because there are so many different types of autism, some children don't need regular care. The findings also could help dismantle the argument by insurance companies that state mandates lead to a spike in autism diagnoses.

David Mandell, lead author of the study and director of the Center for Mental Health Policy and Services Research at Penn Medicine, says it's encouraging to see any movement at all. Even though the proportion of those receiving treatment will not reach the same number as those who have autism, it should probably be higher, he says.

Twenty-Nine States Need IDEA Help

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

Christina Samuels reports at Education Week:

Twenty-nine states and the District of Columbia need some degree of support in meeting the requirements of the Individuals with Disabilities Education Act, according to the U.S. Department of Education's most recent evaluation of state performance.

For the third year in a row, the Education Department evaluated states on the academic outcomes of students 3-21 with disabilities—so-called "results" data—in addition to how well the states met the rules and regulations spelled out in the IDEA.

States were measured on the percentage of students with disabilities participating in state tests and in the National Assessment of Educational Progress, or NAEP; the percentage of students with disabilities scoring at or above basic on NAEP; the percentage of students who dropped out; and the percentage of students with disabilities who graduated with a regular high school diploma.

Twenty-one states were in the category of "meets requirements," an increase of two states from last year. The remaining states were in the categories of "needs assistance" or "needs intervention," each of which comes with some level of increased help or oversight by the department. No state was in the lowest category, "needs substantial intervention."

Transcranial Magnetic Stimulation

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.

At NPR, Robin Marantz Henig writes about transcranial magnetic stimulation:

Autism is a developmental disorder that can be disabling, and there's no cure. That makes families uniquely vulnerable to the potential of untested treatment. The fear is that TMS could turn out to be the latest in a long string of untested or off-label treatments for autism, from chelation therapy to hyperbaric oxygen chambers to gluten-free diets, that desperate parents have been spending money on for decades.

None of these treatments has proven beneficial in clinical trials, and some have actually caused harm. FDA officials worry that even if a treatment is relatively safe, it could still divert precious resources away from proven treatments, such as behavioral interventions and certain drugs.

Companies promoting untested approaches face "possible legal action if they continue to make false or misleading claims about products and therapies claiming to treat or cure autism," the FDA wrote in a consumer bulletin in 2014. "Some of these so-called therapies carry significant health risks."

It's easy to understand the enthusiasm for a treatment like TMS, which is non-invasive, non-pharmacological, and already has FDA clearance for one condition —severe depression that doesn't respond to other treatments. It has few known side effects, though it has been shown, in very rare cases, to cause seizures.

The treatment involves placing a relatively small and very powerful electromagnet on the scalp, and sending pulses of magnetic waves directly into the brain to activate or de-activate particular neurons. It has been used experimentally in autism, mostly in hopes of developing a better diagnostic tool. But as news percolates of this research application, more and more people want to try it for themselves or their children.

But for autism, the science of TMS treatment is, according to researcher Lindsay Oberman, "still in its infancy."

"I know it's easy to get overly optimistic given the media coverage and web posts about the remarkable responses some people with autism have reported after participating in a TMS study," Oberman, a research psychologist at Brown University and Bradley Hospital in Rhode Island, wrote last March in a blog post for the advocacy group Autism Speaks.

But those studies have been very few — just 13 in the medical literature to date — and they tend to focus on only a select group of subjects: adults, generally male, who are high-functioning and do not have epilepsy. It's risky, then, to generalize to how TMS would affect women or children with autism, or people with more severe symptoms.