"More Questions Than Answers"

In The Politics of Autism, I discuss various ideas about what causes the condition.

Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious peer-reviewed studies:

• Pesticides;
• Air pollution and proximity to freeways;
• Maternal thyroid issues;
• Autoimmune disorders;
• Induced labor;
• Preterm birth;
• Birth by cesarean section;
• Maternal and paternal obesity;
• Maternal and paternal age;
• Maternal post-traumatic stress disorder;
• Smoking during pregnancy;
• Antidepressant use during pregnancy. 

Amy Norton writes at Health Day:

Children living in an area of New York state that uses aerial pesticides to control mosquitoes have a higher rate of autism than children in neighboring areas, a new study finds.

Researchers found that children living in a swampy region in central New York were 25 percent more likely to have been diagnosed with autism or general developmental delay, compared to children in other parts of the state.

However, the findings do not prove that aerial pesticides raise the risk of autism, stressed lead researcher Dr. Steven Hicks, a pediatrician at Penn State Milton S. Hershey Medical Center, in Hershey, Pa.

“This study really brings up more questions than answers,” he said. “We need more research before taking any public action on pesticide use.”

Helping Autistic College Students at CUNY

In The Politics of Autism, I discuss the growing number of college students on the spectrum:

We do know that autistic students suffer high levels of depression, anxiety, and social isolation. We also know that their difficulties can affect their academic performance. (Group projects can be hard.) They have to cope with these problems without the protection of an IEP, since the Individuals with Disabilities Education Act does not apply to higher education. The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 provide for certain accommodations (for instance, extra time for tests), but the student has to seek them. According to Jane Brown Thierfeld, co-director of an organization of professionals who assist autistic students, for every student receiving special services, there  are one or two on that same campus who have not come forward.

Meredith Kolodner writes at The Hechinger Report:

Only a few dozen colleges have programs specifically designed to support students with autism, a recent study found. Many of the programs that do exist cost thousands of dollars per semester, on top of tuition. But there are practical and inexpensive methods to help these hundreds of thousands of students navigate the social and academic landmines that stymie them. Failing to help likely consigns them, as adults, to low-wage jobs, dependence on public assistance or ongoing reliance on their parents — who may also be struggling and are unlikely to outlive them.

A pilot program on five campuses at the City University of New York, where the number of students who disclosed that they are on the spectrum has more than doubled since 2012, has shown promising results.

Most CUNY students are low-income, and almost 40 percent come from households with incomes below $20,000 a year. The pilot program was implemented at no cost to students, and, for the most part, students participating in it over the last four years have been more likely to stay enrolled, improve their academic performance (grades for 60 percent of the participants at Kingsborough Community College went up) and report increased satisfaction with their social experience.

Faculty who oversee the program, dubbed Project REACH, emphasize that because of the vast differences in the behaviors and abilities of people on the spectrum, there is no one-size-fits-all solution. But the program is built around a combination that works: weekly workshops (which are open to all students with disabilities) and one-on-one peer mentorship seem to meet a lot of students’ needs.

Is Kylo Ren on the Spectrum?

In The Politics of Autism, I discuss popular culture's relationship to autism.

The Belfast Telegraph is carrying this story:

Star Wars villain Kylo Ren could be autistic, a prominent Labour MP said as she called for the world to “think differently” about the condition.

Jess Phillips told a Commons debate on World Autism Awareness Week that the character’s “teenage tantrum” in Star Wars: The Force Awakens could have been because the Death Star was “too noisy” and made him feel “stressed out”.

The Labour MP for Birmingham Yardley told the House that she spoke as a mother currently on the waiting list for a diagnosis as she called for employers to make it easier for autistic adults to access employment.

 "We concluded that perhaps he was autistic and just couldn't fit into the world he found himself in.

"Perhaps the new Death Star was just too noisy and made him feel stressed out.

"We thought he might wear the mask because he didn't like eye contact.

"I'm not sure it was the filmmaker's intentions but it softened us to him.

Final Passage of Oklahoma Insurance Mandate

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

AP reports:

Legislation that requires health insurers to cover the treatment of children with autism has received final legislative approval in the Oklahoma House.

The House on Wednesday voted 65-26 for the bill and sent it to Gov. Mary Fallin for her signature.

The bill requires coverage for the screening, diagnosis and treatment of autism spectrum disorder in children younger than 9 years old. Under the measure, children would have access to applied behavior analysis for up to 25 hours a week, with a limit of $25,000 a year.

Autism spectrum disorder affects how a person processes sensory information and their ability to interact and relate to others. Oklahoma is one of only seven states in the nation that does not require insurers to cover autism.

House Bill 2962: http://bit.ly/1R7F9l

College Internship Program in Long Beach, California

In The Politics of Autism, I discuss employment prospects and education for people on the spectrum.

At The Los Angeles Times, Joy Resmovits writes about The  College Internship Program, a national effort to offer job training  other services to help young adults with disabilities — including those on the autism spectrum:

The Long Beach program has taken on the specific challenge of helping young adults on the autism spectrum to prepare for the tough circumstances many face when they're no longer entitled to federally guaranteed services such as public school, behavioral therapy, speech therapy or special teacher's aides.

As soon as students with disabilities turn 22 or graduate high school, the federal education money for such services dries up. Although there is money for young adults with developmental disabilities, not everyone who needs it gets it, and people often have to wait. More than a quarter of adults on the autism spectrum don't receive any services, according to a national study Drexel University released in 2015.

In California, tax money trickles through regional centers — local hubs that help people with disabilities throughout their lives and sometimes fund programs such as the internship program that helped [Alexander] Ryan.
...
Most of the 17 students in the Long Beach program that Ryan enrolled in live together in an apartment complex just off Pacific Coast Highway, where they learn to cook, manage their money, navigate the workplace and socialize. The ultimate goal is self-sufficiency. The program reports that 75% of its alumni are employed full or part time.

FDA to Ban Shock

In The Politics of Autism, I write:

For those who remain at larger residential institutions, the horrors of yesteryear have generally ended. In 2012, however, a ten-year-old video surfaced, showing disturbing image of an electric shock device at the Judge Rotenberg Center in Canton Massachusetts. Staffers tied one student to a restraint board and shocked him 31 times over seven hours, ignoring his screamed pleas to stop. The Rotenberg Center is the only one in the nation that admits to using electric shocks on people with developmental disabilities, including autism. Center officials said that they had stopped using restraint boards but insisted that shocks were necessary in extreme cases to prevent officials insist the shock program is a last resort that prevents people with severe disorders from hurting themselves or others. Though a majority of the FDA’s Neurological Devices Panel said that such devises pose “an unreasonable and substantial risk of illness or injury,” the agency had not banned them as of 2014.

A Friday release from the FDA:

The U.S. Food and Drug Administration today announced a proposal to ban electrical stimulation devices (ESDs) used for self-injurious or aggressive behavior because they present an unreasonable and substantial risk to public health that cannot be corrected or eliminated through changes to the labeling.

The FDA takes the act of banning a device only on rare occasions when it is necessary to protect public health. ESDs administer electrical shocks through electrodes attached to the skin of individuals to attempt to condition them to stop engaging in self-injurious or aggressive behavior. Evidence indicates a number of significant psychological and physical risks are associated with the use of these devices, including depression, anxiety, worsening of self-injury behaviors and symptoms of posttraumatic stress disorder, pain, burns, tissue damage and errant shocks from a device malfunction. In addition, many people who are exposed to these devices have intellectual or developmental disabilities that make it difficult to communicate their pain or consent. As these risks cannot be eliminated through new or updated labeling, banning the product is necessary to protect public health.

“Our primary concern is the safety and well-being of the individuals who are exposed to these devices,” said William Maisel, M.D., M.P.H., acting director of the Office of Device Evaluation in the FDA’s Center for Devices and Radiological Health. “These devices are dangerous and a risk to public health--and we believe they should not be used.”

At this time, the FDA has information that indicates only one facility is using these devices in the United States, the Judge Rotenberg Educational Center (JRC) in Canton, Massachusetts, and estimates between 45 and 50 individuals are currently being exposed to the device. The FDA believes that state-of-the-art behavioral treatments, such as positive behavioral support, and medications can enable health care providers to find alternative approaches for curbing self-injurious or aggressive behaviors in their patients. A small subgroup of those exposed to these devices may need time to gradually transition away from this device to another treatment. The FDA stands ready to work with health care providers to help facilitate a safe transition to alternate care for all of those in need since the proposed rule, if finalized, would ultimately remove these devices from the marketplace completely.

In making the determination that these products present an unreasonable and substantial risk of illness or injury to the public, the FDA considered all available evidence, including clinical and scientific data, input from experts in the field and state agencies, comments from JRC, individuals and parents of individuals on whom ESDs have been used, and disability rights groups, as well as insights from an April 2014 FDA advisory panel.

The proposed rule is available online at www.regulations.gov for public comment for 30 days.

A 165% Increase in Students with Autism Classification since 2005-06

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

Christina A. Samuels reports on an Education Week analysis of child-count data from the US Department of Education:

After years of steady decline, the nationwide count of school-age students covered under the Individuals with Disabilities Education Act has shown an upswing since the 2011-12 school year based on the most recently available federal data, driven by rapid growth in such disability categories as autism.

The count of students ages 6-21 with disabilities fell to a low of 5.67 million in fall 2011, but had risen to 5.83 million by fall 2014, the most recent year for which statistics are available.

A third of the nationwide increase in 2014-15 came from one state, New York. The reasons for the sharp increase in the state are not clear.

...

Virginia is among the states that have seen a large increase in the population of students with autism.

At one time, autism was considered a "low incidence" disability in Virginia, said John Eisenberg, the state's director of special education. Now, those students make up the fourth-largest disability category in the state.

Nationwide, the number of 6- to 21-year-old students classified as having autism rose 165 percent between the 2005-06 and 2014-15 school years, based on a count of nearly all states. (Wyoming did not report numbers for 2014-15.)

Service Needs

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Paul Turcotte, Mary Mathew, Lindsay L. Shea, Eugene Brusilovskiy, and Stacy L. Nonnemacher have an article at The Journal of Autism and Developmental Disorders titled "Service Needs Across the Lifespan for Individuals with Autism." The abstract:

The goal of this research was to examine reported service needs among individuals with autism spectrum disorder (ASD) of all ages. Data were generated from a state survey that queried the needs of children, adolescents and adults with ASD. Logistic regression was used to compare service use and need among these age groups. Adults with ASD were less likely to be receiving multiple types of services, and more likely to have a need for services. These findings demonstrate that adults with ASD have more and different needs for services. These results can inform policy and program planning to put in place the services adults with ASD need.

From the article:

As an increasing number of individuals with ASD are growing up and aging out of the education system, the adult service system is flooding with individuals who have unique needs that the adult system may not be prepared to address (Shea 2014). The unmet needs of adults with ASD could suggest that the capacity for providers to deliver these services to adults needs further development or that mechanisms to provide and fund the delivery of these services to adults are not yet in place. In most states, providers in the adult service system have skills in supporting individuals with intellectual disabilities and/or individuals with mental health diagnoses because programs supporting adults with these diagnoses have been operating in states for many years. Unfortunately, states are just beginning to develop ASD specific programs and it is evident that there is a lack of provider capacity to support the unique needs of adults with ASD. Training to prepare providers in the adult system to deliver these services is a top priority (Bruder et al. 2012). This issue requires additional attention, as individuals spend the majority of their lives in adulthood and estimates of spending results in the majority of resources allocated in adulthood (Ganz 2007).

Autism as Mitigating and Aggravating Factor in Criminal Justice

In The Politics of Autism, I discuss interactions between justice system and autistic people.

At The Journal of Autism and Developmental Disorders, Colleen M. Berryessa has a brief report titled "Judicial Attitudes Regarding the Sentencing of Offenders with High Functioning Autism." The abstract:

This brief report presents preliminary data on the attitudes of judges on the sentencing of offenders with High Functioning Autism (HFA). Semi-structured telephone interviews were conducted with twenty-one California Superior Court Judges. Interviews were qualitatively coded and constant comparative analysis was utilized. Findings revealed that judges consider HFA as both a mitigating and aggravating factor in sentencing, and knowledge of an offender’s disorder could potentially help judges understand why a criminal action might have been committed. Judges voiced concerns about the criminal justice system being able to effectively help or offer sentencing options for offenders with HFA. Finally, judges reported that they are focused on using their judicial powers and influence to provide treatment and other resources during sentencing.

From the article:

Overall, nine judges talked about HFA as a potential mitigating factor in sentencing; the large majority of judges that believed HFA would be a potential mitigating factor questioned if an offender’s actions would be completely willful or if his criminal intent would be potentially influenced by the symptoms of the condition (see Berryessa 2014b). One judge, regarding HFA, stated, ‘‘I think it mitigates sentencing and I think it helps put it in perspective to all of the parties in terms of how we can best help this individual’’ (Interview 7).

Three judges described HFA as a potential aggravating factor, as an individual’s inability to control his behavior may be an inherent danger and threat to himself, others, and public safety. One judge, commenting on HFA, said, ‘‘I think it would be a detriment to [offenders] in future cases. Judges are going to be concerned because they’re more likely to re-offend’’ (Interview 5). In general, these judges believed that diagnosis with HFA may lead some to believe that the impulse control problems associated with the disorder will lead to dangerous behavior or offending in the future, which can negatively influence sentencing.

Berryessa, C. M. (2014a). Judicial perceptions of media portrayals of offenders with high functioning autistic spectrum disorders. International Journal of Criminology and Sociology, 3(1), 45–60.
Berryessa, C. M. (2014b). Judiciary views on criminal behaviour and intention of offenders with high-functioning autism. Journal of Intellectual Disabilities and Offending Behaviour, 5(2), 97–106.
Berryessa, C. M. (in press). Judges’ views on evidence of genetic contributions to mental disorders in court. Journal of Forensic Psychiatry & Psychology. doi:10.1080/14789949.2016.1173718

Debating Research Priorities

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).

Some parents, however, argue that the case against cure overlooks differences among people with autism. It is one thing to say that autism is just a “difference” when it involves a high-functioning person with a college degree. It is another when the person is nonverbal or lacks bowel control. One mother told the Pittsburgh Post-Gazette: “I say to this one young man who always brings it up to me, “Look: if my son could be you, that would be a cure.” As a parent who has a child on the more severe end of the spectrum, I think that's a very different thing than someone with high-functioning Asperger’s.”

At Vox, Dylan Matthews writes:

One point that autistic people like myself have been hammering since the rise of the autism rights movement is that charities devoted to the condition focus on the wrong thing. There's a huge emphasis on preventing or even "curing" autism, even though we're nowhere near being able to do either, and many autistic people resent the idea that their psychological differences are in need of "curing."

And a new report finds that this problem isn't going away. In fact, it's getting worse.

The report found that autism funding in 2011 and 2012 was heavily tilted toward researching the underlying biology and risk factors contributing to autism, and away from ways to help actual autistic people.

A mere 7 percent went to researching services for autistic people, and 1 percent to researching the needs of autistic adults...

Multi-State ABLE Consortium

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

A release from Illinois State Treasurer Michael W. Frerichs:

Illinois families planning for the future well-being of a loved one with a disability will be able to leverage the investment power of a multi-state consortium to invest their money for disability-related expenses, Illinois Treasurer Michael Frerichs announced today.

The consortium will manage a tax-advantage investment portfolio similar to those currently used to save for college, such as Illinois’ Bright Start or Bright Directions program. Without the consortium, individual states would lack the market share to ensure low cost and high quality investment options.

“Every parent wants the best for their son or daughter. That feeling weighs a bit heavier on parents of children with a disability or blindness,” Frerichs said. “By working together with other states, we can accomplish what would be impossible if we were to go it alone.”

The federal Achieving a Better Life Experience Act (ABLE) of 2014 authorized these tax-advantaged investment accounts similar to college savings programs such as Illinois’ Bright Start or Bright Directions. College investment programs are able to provide low fees and quality investment options by leveraging investments from the hundreds of thousands of individuals who participate.

The opposite is true with ABLE because individual states typically do not have enough potential participants to solicit a competitively priced and structured program. However, with states working together and leveraging resources, an economy of scale is created to drive down cost and attract quality investment products.

Nine states so far have agreed to work together to help these individuals and families - Alaska, Illinois, Iowa, Kansas, Minnesota, Missouri, Nevada, Pennsylvania and Rhode Island. The states represent more than 47 million residents and cover four time zones. Consortium membership remains open and other states are considering joining.

Nationally, more than 40 states have passed ABLE legislation. None have yet to open an ABLE program. The consortium is unique in that each state will have its own ABLE program over which it will exercise authority but will offer common program elements such as investment options. The next step is to seek public bids for investment services, record keeping, and marketing services.

Endorsement of Oklahoma Mandate

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

The Tulsa World editorial:

The Oklahoma Senate approved last week a measure to mandate coverage. The state House has previously approved a variation of the same legislation. So the measure must return to the House, but our sense is that House Bill 2962 is about to become law.

It’s about time. A similar proposal was considered in a highly emotional debate in 2008 and 2009, but was not approved. That choice has left thousands of insured Oklahoma families to face the extreme financial challenge of autism without any coverage.
Since then, we’ve learned more about the treatment of autism and the cost of that treatment.

While the disorder can be ruinously expensive for families, it’s impact on insurance rates is modest: about 50 cents per month per policyholder, based on other states’ experience.
...
We urge the House to accept Senate amendments to HB 2962 and quickly send this important reform to the desk of Gov. Mary Fallin.

Associational Disability

In The Politics of Autism, I discuss employment of people on the spectrum. A recent study (see post for November 3) confirms what has long been obvious:  they face discrimination in hiring and employment.  But so do their family members

A release from Farella, Braun + Martel:

On April 4, 2016, a California Court of Appeal set new precedent in Castro-Ramirez v. Dependable Highway Express, opining that the California Fair Employment and Housing Act (FEHA) may require employers to reasonably accommodate non-disabled employees who are associated with a person with a disability.

Plaintiff Castro-Ramirez alleged that he needed to be at home each night to administer his son’s daily dialysis, as he was the only person who could do so. For several years, plaintiff’s supervisors at Defendant Dependable Highway Express, Inc. (DHE) scheduled him to allow for that home presence. The schedule accommodation changed when a new supervisor took over and ultimately terminated plaintiff for refusing to work a shift that did not permit him to be home in time for his son’s dialysis.

Plaintiff alleged causes of action for disability discrimination and related claims under the FEHA. Notably, plaintiff had abandoned his failure to accommodate cause of action, so that claim was not before the court. The trial court granted DHE’s motion for summary judgment on the ground that the FEHA did not require DHE to accommodate care for the son’s condition.

In reversing that summary judgment, the California Court of Appeal, Second District, noted that associational disability claims are “a seldom-litigated cause of action,” and “[n]o published California case has determined whether employers have a duty under FEHA to provide reasonable accommodations to an applicant or employee who is associated with a disabled person.” However, the court held that the “very definition of a ‘physical disability’” under FEHA creates a duty to accommodate employees associated with persons with disabilities. Thus, “[a]n association with a physically disabled person is itself a disability under FEHA.” The court acknowledged its departure from federal law under the Americans with Disabilities Act, which “requires accommodations only for applicants or employees who themselves have disabilities,” finding that the ADA language is materially different than the FEHA.

This opinion counsels employers to carefully consider accommodation requests based upon disabilities experienced by employees’ family or household members. When presented with such requests, the employer should engage in an interactive process with the employee, consider accommodation alternatives, and consult knowledgeable counsel regarding the obligations imposed by the FEHA. A failure to engage in the interactive process or provide accommodations in violation of the FEHA may subject the employer to disability and failure to accommodate claims, including possible economic and emotional damages as well as attorneys’ fees.

Luis Castro-Ramirez v. Dependable Highway Express, Case Nos. B261165 and B262524 (April 4, 2016).

HHS and Autism

In The Politics of Autism, I write about the problems of young autistic adults. 

A post at HHS by  Tom Novotny, Autism Coordinator* & Deputy Assistant Secretary for Health (Science and Medicine), Office of the Assistant Secretary for Health and Aaron Bishop, Commissioner, Administration on Disabilities, Administration for Community Living:

The Centers for Disease Control and Prevention recently released data from its Autism and Developmental Disabilities Monitoring Network indicating that 1 in 68 school-aged children are on the autism spectrum. In announcing these data, which are unchanged from 2014, Dr. Stuart K. Shapira, chief medical officer for CDC’s National Center on Birth Defects and Developmental Disabilities, noted the importance of services and supports for these children now and as they grow into adolescence and adulthood.

We could not agree more.

Children with autism, like people with all types of disabilities, need opportunities to grow and gain independence. And from an early age, they should be involved in planning for their own transitions to adulthood.

They need to learn the skills that will enable them to fully participate in their communities, which include earning competitive wages while working alongside people without disabilities. We also must take action to structure our communities and workplaces to embrace their inclusion and benefit from their strengths.
We must ensure that services are available to support all children as they work their way through school, become young adults, attend college and seek employment.

This transition issue is critically important and one of the first priorities for the Autism Coordinator. An initial step in this effort is securing resources for the development of an report on youth and young adults with autism spectrum disorder who face challenges related to the transition from school-based services to those needed during adulthood.

The good news is that a lot of exciting work already is happening across the Department of Health and Human Services toward this end, including:

• The Administration for Community Living (ACL) is working with states and communities across the country to improve access to services for families. In addition, ACL is working to better reach and serve minority communities. You can read more about some of this work here.
• The Health Resources and Services Administration operates 43 Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs, which often work alongside the 71 University Centers of Excellence in Developmental Disabilities, funded by ACL. These programs train professionals from diverse disciplines to diagnose autism and other developmental disabilities and to use evidence-based interventions. Many of these programs focus on outreach to underserved communities.
• Birth to Five: Watch Me Thrive! is a coordinated federal effort, led by the Administration for Children and Families, to encourage healthy child development, universal developmental and behavioral screening for children and support for the families and providers who care for them.

As we reflect on Autism Awareness Month, let’s challenge ourselves to move beyond being aware. Let’s create real acceptance and raise expectations. As a society, we are all better off when all people are given the opportunity to share their unique talents and contributions to society. Let’s focus on finding ways to ensure that people with autism are integrated into every aspect of community life and are appreciated for all their contributions.

*Earlier this week, Dr. Novotny was designated by the Secretary of Health and Human Services as Autism Coordinator in the Department of Health and Human Services.

Kevin and Avonte's Law Advances

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

A Thursday release from Senator Charles Grassley (R-IA):

The Senate Judiciary Committee today advanced legislation to help families locate missing loved ones with Alzheimer's disease, autism or other related conditions. The legislation, titled Kevin and Avonte's Law, reauthorizes the expired Missing Alzheimer's Disease Patient Alert Program, and includes additional provisions to support people with autism. Senator Charles Schumer of New York joined Senate Judiciary Committee Chairman Chuck Grassley in crafting the measure, which cleared the committee by a vote of 15-5.

Kevin and Avonte's Law is named in honor of two boys with autism who died after their conditions caused them to wander. Nine year-old Kevin Curtis Wills, jumped into Iowa's Raccoon River near a park and tragically drowned in 2008. Avonte Oquendo, 14, wandered away from his school and drowned in New York City's East River in 2014.

'Stories of loved ones who wander away from safety because of a medical condition are all too common. Thankfully, with the help of trained first responders and a vigilant community, many of these stories can have a happy ending. Kevin and Avonte's Law uses proven community alert systems and other technology to help locate people with Alzheimer's Disease or other forms of dementia as well as children with autism spectrum disorders who may be prone to wander away safety. It also helps to equip first responders and other community officials with the training necessary to better prevent and respond to these cases. This bill is an important way to honor the lives lost after wandering away, and to prevent future tragedies. I thank Sen. Schumer for working with me on this bill, and my colleagues on the Senate Judiciary Committee for moving it forward,' Grassley said.

Iowa has the fifth highest Alzheimer's death rate in America, according to the Alzheimer's Association, with 1,252 deaths in 2013. About 63,000 Iowans are living with the disease. More than 8,000 Iowa children have been diagnosed with autism spectrum disorders, according to a state coalition, and its prevalence is on the rise.

The bill reauthorizes existing programs designed to assist in locating Alzheimer 's disease and dementia patients, and it adds new support for people with autism. It allows Justice Department grants to be used by state and local law enforcement agencies and nonprofits for education and training programs with the goal of proactively preventing individuals with these conditions from wandering off. The bill also provides access to resources for state and local agencies and organizations to assist in locating these individuals who become separated from their caregivers. The grants will facilitate the development of training and emergency protocols for school personnel, supply first responders with additional information and resources, and make local tracking technology programs available for individuals who may wander from safety because of their condition. Grant funding may also be used to establish or enhance notification and communications systems for the recovery of missing children with autism.

Kevin and Avonte's Law is also cosponsored by senators Thom Tillis of North Carolina, Dick Durbin of Illinois, Christopher Coons of Delaware and Amy Klobuchar of Minnesota.

For more information on Kevin and Avonte's Law, view the bill text and summary.

- See more at: http://www.publicnow.com/view/F7295130629E4C638AAFDC6000E4D2C2E4D69EA4?2016-04-15-05:00:41+01:00-xxx237#sthash.LRjZ3D02.dpuf

The Economist on Autism

In The Politics of Autism, I discuss the need for more study of the issue in other countries.

From The Economist:

One reason for the apparent rise in autism across the rich world is growing awareness, says Simon Baron-Cohen of Cambridge University. Some cases that used to be diagnosed as an “intellectual disability” or (in the bad old days) as “mental retardation” are now being recognised as autism, says Jennifer Stapel-Wax of Emory University’s Marcus Autism Centre. The proportion of people affected by autism appears much lower in poor countries. That is not necessarily because it is less common, but because of shortcomings in diagnosis and data collection, says Andy Shih of Autism Speaks, a charity.

An accompanying editorial:

Medical understanding of the condition has improved since 1949, when the psychiatrist who first identified autism blamed cold, unloving mothers for making their children withdraw into themselves. Scientists today are sure that genes play a role, as do environmental factors. Still, many questions remain unanswered, both about the condition’s origin and its progression. The amount of public money spent studying autism is shockingly modest. Britain’s government spends a trivial £4m ($5.6m) a year. America shells out around $200m a year—about what it costs to look after 100 severely autistic people for a lifetime. Such sums are dwarfed by the opportunity cost of having so many potentially productive people dependent on others. Beautiful or otherwise, an autistic mind is a terrible thing to waste.

De Niro and Vaccines

In The Politics of Autism, I discuss how celebrities and pop culture have spread the debunked notion that vaccines cause the condition:

In 2003, a group of autism parents organized the National Autism Association to encourage self-help and promote “vaccine safety.” Two years later, Lisa and J.B. Handley founded Generation Rescue to recover children whose autism purportedly started with vaccines. The group gained a key supporter in actress Jenny McCarthy, who believed that vaccines had caused her own son’s autism. McCarthy, who had already gained a great deal of publicity for the vaccine theory by discussing it on the Oprah Winfrey show, became the group’s president. (It briefly called itself “Jenny McCarthy and Jim Carrey’s autism organization,” but the celebrity couple split in 2010. )

As press attention went up and stars spoke out, the entertainment media weighed in. In a 2005 episode of “The Shield,” a police detective and his ex-wife contemplated joining a vaccine lawsuit after their two of their children got a diagnosis. They talked to a pediatrician, who refused to help them with the suit because the science does not support the vaccine theory. The detective smelled an ulterior motive: “How many shots with thimerosal have you prescribed to kids? Saying that they’ve been poisoning our kids is just like admitting you've been doing it all along, right?” The 2008 premiere of the short-lived ABC series “Eli Stone” was about a child who had become autistic because of “mercuritol” – a fictional name for thimerosal.

At USA Today, Maria Puente reports that Robert DeNiro went on Today and re-entered the fight over a film on vaccines and autism:

De Niro, the father of an autistic child, at first defended the film as a conversation starter, then a few days later said the conversation had grown too angry and the film was being pulled from the festival.

But on Today, he defended the film again, saying he personally believes there is a link between vaccines and autism, at least for some children, and that few in science or medicine were doing enough to explore the possibility.

He said he just wants "to know the truth."

"I'm not anti vaccine, I want safe vaccines," he said. He said everyone should see Vaxxed because "there's definitely something to it."

But numerous studies by doctors and medical researchers have not found any such link. Moreover, Vaxxed and its creator have been discredited: It was directed by Andrew Wakefield, the "father" of the anti-vaccine movement, who first linked vaccinations and autism in a 1988 [sic: 1998] report that later had to be retracted. Also, his medical license was revoked.

Ohio Mandate Bill

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

Valencia Wicker reports at WBNC-TV in Columbus, Ohio:

Proposed legislation in the Ohio House could make Autism diagnoses cheaper for families to treat with specialized therapy.

Ohio is one of a few states in America that do not mandate full Autism insurance coverage for private companies. Because of that, many families are left trying to figure out how to pay thousands of dollars in treatment.

House Bill 350 could be a way for legislators to fill the void.

Under current law, only state employees are mandated to receive full autism coverage, inclusive of Applied Behavioral Analysis, also known as ABA therapy.  Private companies, on the other hand, have the right to choose whether or not to offer the coverage.

HB 350 would make that coverage mandatory for all companies in the state...House lawmakers hope to vote and approve the bill next week during Autism Awareness Month. 

Nebraska Medicaid to Cover ABA for Autism

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

At the Nebraska Radio Network, Mike Lozzo reports:

Nebraska’s Medicaid program will begin covering behavioral modification services for children with autism.

The move comes after the state was sued in 2012 for denying such coverage. The Department of Health and Human Services lifted that restriction in October 2015.

Vicki Depenbusch with the Autism Family Network says Medicaid covering some treatments, like Applied Behavioral Analysis (ABA), is a long time coming.

“It’s a huge expense. Parents were paying anywhere from $40,000-60,000 out-of-pocket,” Depenbusch tells Nebraska Radio Network. “We realize the benefit of that program, but we couldn’t get insurance to help cover that.”

 Martha Stoddard reports at The Omaha World-Herald:

"This is good news," she said. "Having access to these services will help many of the children we serve through the Medicaid program lead more fulfilling lives."

The approval was received March 30 and is effective retroactively to Oct. 1, when the state started offering the coverage.

Services approved for coverage include day treatment, community treatment aides and outpatient therapy. Treatment models approved for coverage include cognitive behavioral therapy, comprehensive behavioral intervention and applied behavioral analysis for children.

...
State officials long resisted efforts to add the coverage, citing concern about potential costs.

But they reversed course after a judge ruled against the state in a class-action lawsuit filed in the name of two boys, identified as K.D. and S.L.

Lancaster County District Judge John Colborn found that the prohibitions violated federal law and ordered the state to start paying for applied behavioral analysis and similar treatments if recommended by medical professionals.

State officials cited other factors as well in their decision to start coverage. Among them was a directive from the federal government and changes in what professionals consider best practices in autism treatment.

Courtney Phillips, chief executive officer of the Nebraska Department of Health and Human Services, announced Monday that the state has gotten federal approval for coverage of applied behavioral analysis and other behavioral modification services.

Race, Ethnicity, Age, and Spending on Autism Service in California

In The Politics of Autism, I write about the experiences of different ethnic and racial groups.

A release from UC Davis:

Whites with autism spectrum disorder (ASD) in California receive more state funding than Hispanics, African Americans, Asians and others, new research from UC Davis Health System has found. The study also showed that state spending on ASD increases dramatically with age.

Previous evaluations of the state's investment in ASD services have not included adults, a major oversight, according to lead author Paul Leigh, professor of public health sciences and researcher with the Center for Healthcare Policy and Research at UC Davis.

“There are more children diagnosed today with autism than any time in history,” Leigh said, referring to data from the U.S. Centers for Disease Control and Prevention estimating that ASD affects 1 in 68 children. “Our findings can help stakeholders, including legislators and health insurance administrators, accurately estimate the costs of autism services and plan their budgets to meet the lifelong need for those services.”

ASD is a complex neurodevelopmental disorder present in early childhood that impairs communication, social skills and the ability to understand abstractions. In California, services for people with ASD are funded by the Department of Developmental Services (DDS) through 21 regional centers. Up to age 22, people with developmental disabilities can also receive some support — such as speech and occupational therapy — through public schools.

In conducting the study, published in PLOS ONE, Leigh and his team used 2012-13 data on more than 42,000 DDS clients with ASD, including those with the additional diagnosis of intellectual disability.

These bar charts highlight data presented in the study “Spending by California’s Department of Developmental Services for Persons with Autism across Demographic and Expenditure Categories,” which is published in PLOS ONE and authored by Paul Leigh, professor of public health sciences. Click here to view larger versions of the charts.

The researchers found spending differences based on race and ethnicity. Compared to whites aged 3 to 17, average per-person spending was close to $2,000 per person lower for African Americans and Hispanics, with the least spending on African Americans. Differences between whites and other racial/ethnic groups, including Asians, for this age range were small.

Spending differences based on race and ethnicity were more profound for adults with ASD. Compared to whites over the age of 18, average per-person expenditures were nearly $13,000 lower for Hispanics, $8,000 lower for Asians, $6,000 lower for others (including nonresponders, Native Americans and Pacific Islanders) and $4,000 lower for African Americans.

“The reasons for these disparities deserve investigation,” Leigh said. “It could be related to the locations of DDS regional offices around the state and the variable costs and availability of services in those areas. But average per-person spending on autism should not differ this much. There are no distinctions in the services needed by people with autism based on race or ethnicity.”

There were also spending differences based on age. People age 18 and over receive approximately two and one-half times more funding as younger people with ASD, with the widest gap between the youngest and oldest age groups. Average spending for each DDS client aged 3 to 6 was about $12,000, while average spending on each adult with ASD aged 65 and over was close to $50,000.

“As children with autism grow up and become adults and no longer receive public school-based assistance, their services transition to expensive independent living support and more of the cost burden shifts to the state,” Leigh said.

“We hope our data can help justify earlier, expanded and equitable spending on younger children with autism," Leigh added. "There is a great return on investment in high-quality early intervention services, which consistently have been found to reduce the disability associated with autism and to support the greater independence and integration in society as a whole of adults with autism.”

Leigh’s co-authors were Scott Grosse of the U.S. Centers for Disease Control and Prevention, and Diana Cassady, Joy Melnikow and Irva Hertz-Picciotto of UC Davis. Their work was funded by Autism Speaks and the National Institute for Occupational Safety and Health (grant U54OH007550).

A copy of the study, titled “Spending by California’s Department of Developmental Services for Persons with Autism across Demographic and Expenditure Categories,” is available online.

Early Intervention in Utah

In The Politics of Autism, I discuss evaluation and diagnosis of young children.

Leslie Mouton reports at KSAT-TV:

Associate professor of psychiatry at the University of Utah, Deborah Bilder, MD, said, “Our scientific community has proven early intervention specific to autism can reduce the characteristics of autism that these children experience as they get older, can improve the ability of these kids to be in Mainstream settings.”

A new study co-authored by Bilder has paved the way for wider access to early intervention. And now, lawmakers, schools, and health departments see how effective the program is.

“I feel like these numbers help these decision-makers determine what they need to do to improve the health and outcomes of those they serve,” Bilder told Ivanhoe.
...
Already in Utah, one of the five states in the study, lawmakers have passed legislation improving early access and intervention for autistic children.

And now, there’s a statewide waiver for kids who get Medicaid to get free services.

Services in Massachusetts

In The Politics of Autism, I write:

Two demographic trends will influence autism politics in the coming decades. First, the identified autistic population will get bigger, particularly in the adult range. Service providers refer to this coming change as a “tsunami,” after a large ocean wave that is barely visible when it moves over deep water but packs great power when it hits land. Second, the general population will be getting older just as the autism tsunami arrives, complicating the policy response.

Susan Senator, the author of Autism Adulthood: Strategies and Insights for a Fulfulling Life, writes about Massachusetts:

Now the number of people diagnosed with autism is greater compared to decades ago: 1 in 68. And even though the CDC recently announced that the numbers may be leveling off, long vacation days have not gotten any easier.

There are something like 5,700 families in crisis like ours in the state who need help teaching their children safety and home, community and life skills. These families may also need help overnight to keep the child safe in the house.

The Arc of Massachusetts, a statewide advocacy organization, says on its website that “across Massachusetts, 18,000 families are caring for a family member with an intellectual or developmental disability in the home.”

Leo Sarkissian, executive director of the statewide group, said they are now pushing for the Legislature to increase the budget for supporting families in various ways: $15 million for this year and a $25 million increase to help families with older children and young adults. These increases would get more money to families to make the support “meaningful,” Sarkissian said, and more than just a few hours a week of respite. Increased family support would help hundreds of families, including those who have a young adult turning 22.

“This year 900 young adults will be entering the system, a 34 percent increase in just five years,” Maura Sullivan, the ArcMass director of government affairs, said. “So the Arc is also supporting an increase in funding for the ‘turning 22 budget’ and other critical adult services.”

In this era of community inclusion and accommodations, residential placements can and should be avoided. Last month Gov. Charlie Baker released a favorable budget number, with a $5 million increase for family supports. Now we need those numbers to be increased in the House and Senate to reach more of the families in highest need.

We were lucky to get Nat the support he needed, when he needed it. Now 26, Nat has learned enough independence as a young adult that he no longer lives in a group home. He has an apartment with a caregiver and lives just 10 minutes from us.

But others we know are not as fortunate

Sanders on Autism and Disability

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  As I explain in the book, Hillary Clinton has a long history with the issue, and has issued an autism policy statement for the 2016 campaign.

From the independent "Feel the Bern" site:

Has Bernie advocated for [sic] increased funding to programs meant to support people with disabilities?

Yes, multiple times. Bernie co-sponsored the Expand TRICARE Coverage of Autism amendment, which expanded the program’s coverage to include autism spectrum disorders and appropriated an additional $45 million for the insurance coverage of autism therapy. He also co-sponsored the Assistive Technology Act of 2004, supporting grants to programs intended to address assistive technology needs of individuals with disabilities.

Bernie Sanders's official page on disabilities:

“The Americans with Disabilities Act established a clear national mandate that we as a nation have a moral responsibility to ensure that all Americans have access to the programs and the support needed to contribute to society, live with dignity, and achieve a high quality of life.”
— Senator Bernie Sanders


When the Americans with Disabilities Act (ADA) was passed 25 years ago, it was hailed as the world’s first comprehensive declaration of equality for people with disabilities. Today, as a result of this landmark legislation, millions of people with disabilities are no longer denied the opportunity to get on a bus, go to a decent school, make a decent living, attend a baseball game, and live successful and productive lives. Instead of being isolated and hidden from society, kids with disabilities are now in classrooms all over America and graduating from high school and college with the respect and admiration of their classmates, teachers, and families.

This transformation in our culture and society did not happen by accident, and it did not happen overnight – it happened because a grassroots movement demanded change. Despite the progress that has been made over the past two decades, we unfortunately still live in a world where people with disabilities have fewer work opportunities and where the civil rights of people with disabilities are not always protected and respected.
Bernie has been a champion for the rights of people with disabilities and he will continue to fight to ensure that our society is one where people with disabilities can live full and productive lives.

As President, Bernie will:

PROTECT AND EXPAND THE SOCIAL SECURITY DISABILITY INSURANCE PROGRAM (SSDI)
SSDI is vitally important to more than 11 million Americans, including more than one million veterans and nearly two million children. The average disability benefit is about $1,200 a month. For many people, that is their entire income.

INCREASE EMPLOYMENT AND EDUCATIONAL OPPORTUNITIES FOR PERSONS WITH DISABILITIES.
In the year 2016, it is unacceptable that over 80 percent of adults with disabilities are unemployed. We need to fully fund the Individuals with Disabilities Education Act (IDEA) and vocational education programs. We also need to expand funding for Aging and Disability Resource Centers (ADRCs), which aim to provide “one-stop shopping” for information on long-term services and support.

FIGHT FOR THE U.S. RATIFICATION OF THE CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES.
Bernie will continue to fight for equal access and equal rights for people with disabilities. That’s why Bernie strongly supports the ratification of this important treaty.

Nearly one-in-five Americans have a disability. Disability may occur at any stage of life, to anyone, and how our government and elected leadership respond to the issues facing people with disabilities and their families – from housing and transportation, to autonomy, to employment and education and access to services – shapes the fabric of our society.

At a time when millions of disabled Americans are struggling to keep their heads above water economically, Bernie believes that we must expand the social safety net in this country so that every American can live in dignity.

As the lead Democrat on the Budget Committee, Bernie fought against the Republican budget that would make lives much more difficult for persons with disabilities by throwing 27 million Americans off of health insurance, cutting Medicaid by $500 billion, turning Medicare into a voucher program, and making savage cuts in education, affordable housing, vocational assistance, and nutrition programs.

Instead of slashing Medicaid, instead of privatizing Medicare, Bernie believes what the United States must do is join every other major nation on earth and recognize that health care is a right of citizenship for every American, regardless of age.

That’s why Bernie is fighting for a Medicare-for-all single-payer health care plan for every man, woman, and child in this country.

As Franklin Delano Roosevelt reminded us: “The test of our progress is not whether we add more to the abundance of those who have much, it is whether we provide enough for those who have little.” And that is a test that we as a nation must once again meet and master.