HCBS Waivers Have Positive Effects

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities.  Home and Community-Based Services (HCBS) are particularly important.

Karen Goldrich Eskow, Gregory S. Chasson, Jean Ann Summers have an article at The Journal of Autism and Developmental Disorders titled "The Role of Choice and Control in the Impact of Autism Waiver Services on Family Quality of Life and Child Progress." The abstract:

Home and Community-Based Services (HCBS) Waivers provide support and services to families with a child/youth with autism spectrum disorder (ASD). Research indicates HCBS Waivers are positively related to family quality of life (FQoL) and Child Progress. This study replicated and expanded prior research using propensity score matching of 460 families. Results support prior findings that HCBS waivers have a positive impact on FQoL and aspects of child progress. This study also found that having choices in the selection of services and service providers, as well as control over day-to-day provision of services, strengthened both the child and family impacts of the Waiver services. In addition, the study provides preliminary evidence for psychometric properties of a quick and inexpensive parent-report of ASD severity 

Antivax Harm

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Antivax sentiment has been strong in the Pacific Northwest.

Molly Enking, and Natalie O'Neill at The Daily Beast:

A measles outbreak in the Pacific Northwest ballooned to 35 cases over the weekend, and officials are bracing for even high numbers in two states where parents can choose not to vaccinate their kids for personal reasons.

The affected area—Clark County, Washington, and King County, Oregon— has one of the country’s largest concentration of unvaccinated residents.

“Oregon and Washington are two of 18 states that can choose not to vaccinate because of ‘personal or philosophical’ reasons,’” Peter Hotez, a microbiologist at Baylor University who has studied anti-vaxxer hotspots, told The Daily Beast.

“The parents who chose not to vaccinate tend to be far-left or far-right politically,” he said. “It seems to be the only thing the far left and far right can agree on.”

Shelia Poole at The Atlanta Journal-Constitution:

Georgia health officials on Tuesday confirmed three cases of measles, all within the same metro Atlanta family.

No additional information was released about the family, including the ages of those affected, which county they lived in or where they could have contracted the disease.

The only information released is that none of those who fell ill had been vaccinated.

 Josh Bloom and Alex Berezow at Newsweek:

Anti-vaxxers claim that if vaccines are so effective, the unvaccinated have nothing to worry about. This is a malicious lie. No vaccine is 100% effective, and many can wear off over time. Additionally, some children cannot be vaccinated because they are either too young—the vaccine is not given before age 12 months—or too sick (for instance, immunocompromised) to receive vaccines. These children rely on the rest of us to protect them, a concept known in public health as “herd immunity.”

The purposeful misinformation that pollutes the Internet is categorically wrong; there is no valid reason whatsoever to avoid fully vaccinating your child according to the CDC’s recommended schedule.

Vaccines do not cause autism. This theory, which was spawned by a fraudulent get-rich scheme in the 1990s, has been shown repeatedly to be without any merit. Another fear, that there are “too many” vaccines, is also false. When your child crawls around on the floor licking his hands, he is exposed to far more antigens than those found in all vaccines combined. He is inadvertently “vaccinating” himself all day long.

Meghan Keneally at ABC:

Vaccines are universally backed by respected scientists and federal agencies, but that isn’t enough to convince every parent to vaccinate their children.

The decision to fly in the face of near universal scientific opinion doesn't come as a result of a lack of intellect, however, as experts who have studied vaccines and immunology acknowledge that many parents who don't vaccinate their children are well-educated.

They also appear to be the victims of a widespread misinformation campaign, the experts said.

Daniel Salmon, who is the director of the Institute of Vaccine Safety at Johns Hopkins University, said that existing research suggests that there are some common attributes that many parents who choose not to vaccinate their children share.

"They tend to be better educated. They tend to be white, and they tend to be higher income. They tend to have larger families and they tend to use complementary and alternative medicine like chiropractors and naturopaths," Salmon said.

Russia has contributed to vaccine disinformation. 

Employment Program for Adults with Disabilities

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.

Unemployment among people with disabilities is down. One reason is the overall job market.  Another is the effort of companies to hire disabled people. Eric Morath at WSJ:

Like many adults with disabilities, Nathan Mort has often struggled to find and hold a job. A conservation group once declined his attempt to volunteer. The 37-year-old West Michigan native, who has a high-functioning form of autism, ended up living with his parents and dependent on government payments.

His fortunes turned several years ago when a local food distributor, Gordon Food Service, found itself short of entry-level workers and developed an internship program for adults with disabilities. Mr. Mort was hired from the program permanently to track warranty claims for the company’s trucks and other equipment. That allowed him to stop collecting federal disability benefits and move into his own home.
...
The program that brought Mr. Mort to Gordon Food Service came from the company recognizing it may be missing a potential pool of candidates, said Jill Day, senior talent acquisition leader. A suggestion to work with Hope Network, a Grand Rapids, Mich., nonprofit that serves the disabled, came from staff members who had disabled family members.
...
Gordon Food Service was able to tap into what some autism experts call a “splinter skill,” something an autistic person does exceptionally well. For Mr. Mort it’s the ability to process complex strings of numbers combined with being a fast typist—his hands don’t bother him on a keyboard.

...
Mr. Mort’s father, Bruce, now worries less about what will happen once he and his wife are no longer able to care for their son. “It was scary for a while,” he said. “During the recession there weren’t many companies willing to give someone with autism a chance.”

Questions About Choice Programs

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.  Vouchers and charter schools are part of the ongoing debate.

COPAA Executive Director Denise Marshall at The Hill:

Last November, the National Council on Disability (NCD) published the School Choice Series (Vouchers and Charter Schools); both were officially submitted to the White House. To date, Secretary DeVos has failed to mention any of the documented findings, especially those critical to explaining the extreme variance and lack of availability of the same type; or in some cases, any choice for students with disabilities as compared to other school-age students.

For example, the NCD voucher report found that the same concerns presented in 2003 (by NCD in a prior report) continue to be critical problems in 2018. Specifically, the report highlights:

NCD found that while some families experience that private schools are able to meet the needs of children with disabilities better than public schools, parents and families using vouchers can lose access to IDEA rights; accountability can suffer; and vouchers might only cover a portion of private school cost, leaving a majority of families unable to access any choice at all.

These NCD findings are consistent with other reports for example in 2016: Private School Choice Programs Are Growing and Can Complicate Providing Certain Federally Funded Services to Eligible Students, and School Vouchers and Students with Disabilities: Examining Impact in the Name of Choice; in 2017, Private School Choice: Federal Actions Needed to Ensure Parents Are Notified About Changes in Rights for Students with Disabilities; and 2018 5 Policy Ideas to Improve Private School Voucher Programs.

Northwest Measles

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Antivax sentiment has been strong in the Pacific Northwest.

Amir Vera at CNN:

As of Saturday, there are 32 confirmed cases of measles in Washington -- an outbreak that has already prompted Gov. Jay Inslee to declare a state of emergency.

"Measles is a highly contagious infectious disease that can be fatal in small children," Inslee said in his proclamation Friday, adding that these cases create "an extreme public health risk that may quickly spread to other counties."

As of Saturday, there were 31 cases of the measles in Clark County, which sits on the state's southern border, just across the Columbia River from Portland, Oregon. Of the 31 cases, 21 are children between the ages of 1 and 10 years old.

There is also one case in King County, which includes Seattle. While the King County website says the man in his 50s is a "suspected case," the governor said in a news release it is a confirmed case of measles.

It's no surprise but #Clark County WA #measles outbreak has now "jumped across the Columbia" to #Multnomah County OR, where in @PLOS we found really high #vaccine exemption rates due to #antivax movement. The outbreak may have entered a new expanding phase https://t.co/3cU9gug646

— Prof Peter Hotez MD PhD (@PeterHotez) January 26, 2019

Who caused 2019 WA-OR #measles epidemic (in order):
1. Organized #antivax lobby - 400 phony websites, FB, books, PACS
2. Cowardice/ignorance from WA-OR legislatures/leaders throwing kids under the bus for political expediencies
3. Near zero advocacy
That's why I wrote the book pic.twitter.com/MUuE07dk0B

— Prof Peter Hotez MD PhD (@PeterHotez) January 26, 2019

Antivaxxers on Minnesota Autism Council

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

Jessie Van Berkel at the Minneapolis Star Tribune:

The MN Autism Council was formed last fall by Sen. Jim Abeler, R-Anoka, to discuss autism and advise the Legislature on public policy.

Abeler said he wants the group to represent diverse viewpoints and said it will be focused on issues like housing, employment and education, not vaccines.

But some advocates take issue with having people who have vaccine concerns on the council.

Anti-vaccination groups have focused on Minnesota’s Somali-American community in the past as they tried to perpetuate the hoax that vaccines cause autism, contributing to a drop in vaccinations and the largest measles outbreak in the state’s recent history in 2017.

“Even if it’s not something that’s discussed or that a policy is going to come out of, giving them this large contingency on this council is dangerous. It’s giving credence to a theory that’s false,” said council member Noah McCourt, an autism self-advocate who also serves on the Minnesota Governor’s Council on Developmental Disabilities.
...
Two of the more than 30 members on the council are known vaccine skeptics. One of them is Wayne Rohde, who is one of three initial members Abeler picked to help shape the group. Those three selected the rest of the members from a pool of applicants.

Aversive Update

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.

Jennifer McKim, of the New England Center for Investigative Reporting, at NPR:

Now the U.S. Food and Drug Administration says it plans to ban the controversial device, which administers the skin shocks to stop such behavior, by the end of this year. FDA Commissioner Scott Gottlieb said in a report last fall that the apparatus developed by the Rotenberg center presents "an unreasonable and substantial risk to public health." Potential risks include burns to the skin, anxiety, fear and pain, federal records show.

... 

Executive Director Glenda Crookes says the school and its supporters would litigate to protect its rights to treat residents with the apparatus it developed and has used for nearly three decades. The center has prevailed against other efforts to stop it — most recently in June when a local judge ruled in its favor.

... 

The school phased out most other practices and now relies mostly on the shock device known as a graduated electronic decelerator. Currently, 48 adult students are court-approved to wear the backpacks, according to Crookes. The numbers of students with backpacks has dropped since 2011 after the state passed regulations to prohibit new residents from being considered for the shocks.

The FDA first proposed the ban on the device in 2016 and requested public comments. Frustrated by delays, activists last year staged protests in front of the school in Canton, Mass., and outside the Indianapolis home of Health and Human Services Secretary Alex Azar.

In December, an international human rights group connected to the Washington, D.C.-based Organization of American States urged the United States to immediately stop the practice. The school also is facing several civil lawsuits from former residents alleging mistreatment.

Oregon Outbreak

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.   This bogus idea can hurt people by allowing disease to spread.

CBS News reports:

A public health emergency has been declared in Clark County, Washington, as a result of an ongoing measles outbreak. According to the latest update from the county's Department of Health, 23 cases of measles have been confirmed and health officials are investigating two more suspected cases.

The majority of cases are in children aged 1 to 10. Four cases are in children and teens aged 11 to 18, and one person aged 19 to 29 has been infected.
...
Eighteen states in the U.S. currently permit non-medical exemptions from childhood vaccinations due to philosophical beliefs. An analysis published last June in the journal PLOS Medicine found an increase in the number of children enrolling in kindergarten with a non-medical exemption in 12 of these states.

The study also identified 15 metropolitan clusters or "hotspots" of higher rates of vaccination exemptions. The Portland, Oregon, area, just across the Columbia River from Clark County, is one of those hotspots.

"As larger unvaccinated populations grow, particularly in highly mobile cities, the potential for vaccine-preventable disease outbreaks grows," study authors Peter Hotez and Melissa Nolan said in a joint statement. "Measles outbreaks are of particular concern because measles is so highly transmissible and is associated with high morbidities, leading to hospitalization and sometimes permanent neurological injury or even death."

Isaac Stanley-Becker at WP:

State data shows that 7.9 percent of children in Clark County were exempt in the 2017-2018 school year from vaccines required for kindergarten entry, which includes the two-dose course for measles that the Centers for Disease Control and Prevention says is 97 percent effective. Only 1.2 percent of the children had a medical dispensation, meaning that nearly 7 percent were not immunized for personal or religious reasons. Nationally, about 2 percent of children went without required immunizations for nonmedical reasons.

...
“Portland is a total train wreck when it comes to vaccine rates,” Hotez said in an interview with The Post.

Opposition to compulsory vaccination in the Pacific Northwest dates to the Progressive Era and continuesdespite major medical breakthroughs. The modern anti-vaccination movement — built on debunked research published in 1998 that associated the vaccine for measles, mumps and rubella, known as the MMR vaccine, with autism — is not exclusive to one side of the political divide, survey data suggests; it tends to find its most fervent supporters at both extremes.

Unmet Health Care Needs

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

Arun Karpur, Angela Lello, Thomas Frazier, Pamela J. Dixon, and Andy J. Shih have an article at The Journal of Autism and Developmental Disorders titled "Health Disparities among Children with Autism Spectrum Disorders: Analysis of the National Survey of Children’s Health 2016."  Abstract:

Utilizing the 2016 National Survey of Children’s Health, this study illustrates that children with ASD have nearly 4 times higher odds of unmet health care needs compared to children without disabilities, whereas children with other disabilities had nearly 2 times higher odds of unmet health care needs compared to children without disabilities. Applying Andersen’s Behavioral Model of health care utilization, this study estimates that enabling factors (e.g., access to health insurance, quality of health insurance, access to family-centered care, family-level stress, exposure to adverse childhood experiences, and parental employment) improved prediction of regression model for unmet health care needs by 150%. Policy and program implications are discussed and a new framework for responding to observed disparities is discussed.

Death by Suicide

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

Anne V. Kirby and colleagues have an article at Autism Research titled "A 20‐Year Study of Suicide Death in a Statewide Autism Population."

Scientific Summary
Growing concern about suicide risk among individuals with autism spectrum disorder (ASD) necessitates population‐based research to determine rates in representative samples and to inform appropriate prevention efforts. This study used existing surveillance data in Utah to determine incidence of suicide among individuals with ASD over a 20‐year period, and to characterize those who died. Between 1998 and 2017, 49 individuals with ASD died by suicide. Suicide cumulative incidence rates did not significantly differ between 1998 and 2012 across the ASD and non‐ASD populations. Between 2013 and 2017, the cumulative incidence of suicide in the ASD population was 0.17%, which was significantly higher than in the non‐ASD population (0.11%; P < 0.05). During this period, this difference was driven by suicide among females with ASD; suicide risk in females with ASD was over three times higher than in females without ASD (relative risk (RR): 3.42; P < 0.01). Among the individuals with ASD who died by suicide, average age at death and manner of death did not differ significantly between males and females. Ages at death by suicide ranged from 14 to 70 years (M[SD] = 32.41[15.98]). Individuals with ASD were significantly less likely to use firearms as a method of suicide (adjusted odds ratio: 0.33; P < 0.001). Study results expand understanding of suicide risk in ASD and point to the need for additional population‐based research into suicide attempts and ideation, as well as exploration of additional risk factors. Findings also suggest a need for further study of female suicide risk in ASD. Autism Research 2019. © 2019 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals, Inc.

Lay Summary
This study examined suicide risk among individuals with autism spectrum disorder (ASD) in Utah over a 20‐year period. Risk of suicide death in individuals with ASD was found to have increased over time and to be greater than in individuals without ASD between 2013 and 2017. Females with ASD were over three times as likely to die from suicide as females without ASD. Young people with ASD were at over twice the risk of suicide than young people without ASD. Individuals with ASD were less likely than others to die from firearm‐related suicides.

From the article:

Unemployment is common among individuals with ASD, and has been posited to relate to high rates of suicidal behavior [e.g., Pelton & Cassidy, 2017]. Thus, it is notable that approximately half (49%) of the individuals with ASD who completed suicide in our sample were listed on their death certificate to either have an occupation or be a student (an additional 40% had no data). These results may imply that individuals with ASD who are employed or enrolled in school are not necessarily at lower risk for suicide. Employment is an important priority for adults with ASD, but based on our findings, we note that placement in a job should not be viewed as de facto suicide prevention. Future studies should further examine employment status with more complete data, as well as other key factors such as job satisfaction, overall quality of life, and mental health.

The Shutdown Hurts People with Disabilities

The Politics of Autism discusses legislation before Congress.

Alicia Epstein, Susan Prokop, and Philip Kahn-Pauli write at The Hill:

According to a 2016 report by the Official of Personnel Management (OPM) there are over 173,000 federal employees with disabilities across all different categories of disabilities. When you include veterans with service-connected disabilities, that number rises to over a quarter million employees. That means federal employees with disabilities represent 14.41 percent of the overall workforce while fully 19 percent of veterans with service-connected disabilities work for the federal government.
...
There are over 14,000 employees with disabilities at the Department of Homeland Security, around 8,000 at DOJ and a similar number at Agriculture. The Department of Transportation employs over 5,000 workers with disabilities while Commerce is also home to around 2,700 workers with disabilities. To varying degrees, all of them are being hurt by the continuing government shutdown.

In addition to federal employees being furloughed, hundreds of thousands of contractors with disabilities are also impacted. For contractors, even when the government reopens, they will probably not receive any back pay whatsoever. Among those contractors are over 2,000 employees with disabilities working in the AbilityOne Program with significant disabilities directly impacted by the partial shutdown.

"Vaccines are not toxic, and they do not cause autism."

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.   This bogus idea can hurt people by allowing disease to spread.

From an editorial in the New York Times:

Be savvy. The Vaccine Confidence Project is a London-based academic endeavor that monitors anti-vaccine websites for rumors and conspiracies and addresses them before the messages go viral. It also conducts regular surveys of attitudes and puts out a vaccine confidence index. Federal health officials would do well to implement a similar program, make it as public as possible and pair it with an aggressive and targeted social media campaign that makes as much use of celebrities as the anti-vaccine movement has.

Be clear. Vaccines, to some extent, are victims of their own success. In the United States especially, they’ve beaten so many infectious foes into oblivion that hardly any practicing doctors, let alone new parents, remember how terrible those diseases once were. An effective pro-vaccine campaign needs to remind us: Vaccines prevent two million to three million deaths globally each year. In developing countries, people line up for hours to get these shots. It’s also O.K. to get out of the gray zone. Scientists, especially, are uncomfortable with black-and-white statements, because science is all about nuance. But, in the case of vaccines, there are some hard truths that deserve to be trumpeted. Vaccines are not toxic, and they do not cause autism. Full stop.

Initiative to Address the Inappropriate Use of Restraint and Seclusion

In The Politics of Autism, I discuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

A Thursday release from the US Department of Education:

U.S. Secretary of Education Betsy DeVos announced today that the U.S. Department of Education will launch an initiative to address the possible inappropriate use of restraint and seclusion in our nation’s schools. The Office for Civil Rights (OCR), in partnership with the Office of Special Education and Rehabilitative Services (OSERS), will oversee this proactive approach which will protect students with disabilities by providing technical assistance and support to schools, districts, and state education agencies, and strengthen enforcement activities.

“This initiative will not only allow us to support children with disabilities, but will also provide technical assistance to help meet the professional learning needs of those within the system serving students,” Secretary DeVos said. “The only way to ensure the success of all children with disabilities is to meet the needs of each child with a disability. This initiative furthers that important mission.”

The Department’s Initiative to Address the Inappropriate Use of Restraint and Seclusion will not only include components that help schools and districts understand how federal law applies to the use of restraint and seclusion, but the Department will also support schools seeking resources and information on the appropriate use of interventions and supports to address the behavioral needs of students with disabilities.

The Department’s initiative will include the following three components:

Compliance Reviews

• OCR’s 12 regional offices will conduct compliance reviews on recipients’ use of restraint and seclusion on children with disabilities.
• Compliance reviews will focus on the possible inappropriate use of restraint and seclusion, and the effect of such practices on the school’s obligation to provide a free appropriate public education (FAPE) for all children with disabilities.
• OCR will conduct compliance reviews and work with public schools to correct noncompliance.

CRDC Data Collection

• OCR will conduct data quality reviews and work directly with school districts to review and improve restraint and seclusion data submitted as a part of the Civil Rights Data Collection (CRDC).
• OCR will provide technical assistance to schools on data quality, to ensure that they are collecting and reporting accurate data relating to the use of restraint and seclusion.

Support for Recipients

• OCR will provide technical assistance to public schools on the legal requirements of Section 504 of the Rehabilitation Act relating to the use of restraint and seclusion on children with disabilities.
• OCR will partner with OSERS to provide joint technical assistance to support recipients in understanding how Section 504, Title II, and the Individuals with Disabilities Education Act (IDEA) informs the development and implementation of policies governing the use of restraint and seclusion.
• OSERS will support recipients identified by OCR through compliance reviews or through the complaint resolution process to ensure they have access to appropriate technical assistance and support.
• OSERS will support schools to ensure they have access to technical assistance and available resources as they establish or enhance environments where the implementation of interventions and supports reduces the need for reliance on less effective and potentially dangerous practices.
• OSERS will consider how current investments may be utilized to provide support and training to schools, districts, and states.
• OSERS and OCR will jointly plan and conduct webinars for interested parties related to the use of appropriate interventions and supports for all students.

“In collaboration with OSERS, we will work to ensure that recipients are aware of their legal obligation under Section 504 and Title II, and that we have accurate information and data on the use of restraint and seclusion,” said Assistant Secretary for Civil Rights Kenneth L. Marcus. “Working directly with schools and districts provides an excellent opportunity to help recipients and support their efforts toward compliance to ensure that all children have an opportunity to succeed in the classroom.”

“OSERS has long focused on improving results and outcomes for children with disabilities,” said Assistant Secretary for Special Education and Rehabilitative Services Johnny W. Collett. “Rethinking special education and challenging the status quo includes examining systems that keep us from making the kind of improvement we know is necessary. This initiative furthers our ongoing efforts to examine any practice that limits opportunities for children with disabilities.”

Cannot Repeat It Enough: Vaccines Do Not Cause Autism

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.   This bogus idea can hurt people by allowing disease to spread.

Dr. Peter Hotez at The Hill:

There is no link between vaccines and autism. I trace the modern anti-vaccine movement alleging vaccine-autism links back to 1998 when a paper was published in The Lancet, a prestigious medical journal, claiming that the live measles-mumps-rubella (MMR) vaccine (especially the measles component) might lead to pervasive developmental disorder, a term then used to refer to autism.

That paper was subsequently retracted by the journal editors and shown to be fundamentally flawed and scientifically invalid. In addition, several large population-based studies showed that children who received the MMR vaccine were no more likely to get autism than children who were not vaccinated, while further studies found that autistic children were no more likely to have received the MMR vaccine than children not on the autism spectrum.

However, claims of autism and vaccines then shifted from the MMR vaccine, when it was alleged thimerosal preservative that used to be found in many childhood vaccines (but which now has been mostly removed) caused autism. Again, population-based studies showed no links between autism and thimerosal-containing vaccines and indeed after thimerosal vaccines were removed from markets in the United States, Denmark and elsewhere, autism rates did not decline.

From there, the assertions moved to the concerns that somehow spacing vaccines too close together was the issue, but that too does not hold up, and lately there are new rounds of allegations claiming that aluminum-based adjuvants found in some childhood vaccines cause autism, which is also not true.

The point being that this is the modus operandi of the anti-vaccine movement — a strange type of vaccine “whack-a-mole” — forever looking for new vaccine links only to have them disproven time and time again.

The World Health Organization has named vaccine hesitancy as one of the top 10 health threats of 2019.  Kate Wheeling at Pacific Standard:

One of the biggest reasons that more and more parents are choosing not to vaccinate their children could be a lack of trust in physicians, according to Dennis Rosen, a pediatric specialist:

The ongoing erosion of trust in the medical establishment as a whole is also to blame, as frequent reports of dubious financial relationships between physicians, professional medical societies, and the pharmaceutical industry leave many questioning whether or not physicians can be trusted.

Unsure of what to do and whom to listen to, many seek answers to their questions elsewhere, or simply rely on their gut feeling, without speaking to those one would presume to be the most qualified to provide science-based guidance specifically tailored to the patient's own values and cultural sensitivities.

That's why the WHO is dedicated to supporting health workers on the ground all over the world as it confronts this and other top health threats of 2019. "Health workers, especially those in communities, remain the most trusted advisor and influencer of vaccination decisions," the organization writes, "and they must be supported to provide trusted, credible information on vaccines."

National Council on Severe Autism

The Politics of Autism includes a discussion of major interest groups such as Autism Speaks and ASAN.  The groups have different and often conflicting priorities.

A release from the National Council on Severe Autism:

Against a backdrop of increasing challenges for individuals with autism and their families nationwide, leading advocates have announced the formation of the National Council on Severe Autism (NCSA). The new organization is created to address pragmatically the many serious challenges in services, housing, and policy facing families, caregivers and individuals affected by severe forms of autism and related disorders.

“Autism is often romanticized and sugar-coated in the media and social media,” said Jill Escher, NCSA President. “In contrast, our efforts will be guided by pragmatic realities. For countless families devoted to the well being of their disabled loved ones, the daily challenges can be overwhelming, and the prospects for the future extremely bleak. We will work to increase capacity and a range of new options for this population.”

The NCSA addresses forms of autism that, by virtue of any combination of cognitive and functional impairments, necessitate continuous or near-continuous supervision, services and supports over the lifespan. Individuals in this category are often nonverbal or have limited use of language, are intellectually disabled, and, in a subset, exhibit challenging behaviors that interfere with safety and well-being. Data from the U.S. Centers for Disease Control, along with other population studies, suggest that nearly 1% percent of children and adolescents in the United States likely have a form of autism meeting these criteria.

“The growth of the severely disabled autistic population—nearly 1% of all children in the U.S., together with a burgeoning population of young adults—requires clear-headed, matter-of-fact policy solutions that deliver results," said Amy Lutz, NCSA Secretary. "We look to work cooperatively with federal and state agencies to create cost-effective ways of finding quality places to live and well trained and dedicated people to help care for disabled relatives and neighbors. They deserve it, and wishful thinking about autism won't solve the problem."

"The establishment of the NCSA will be an invaluable contribution to the autism community, both in the U.S. and beyond," said Lee Wachtel, MD, Medical Director, Neurobehavioral Unit, of the Kennedy Krieger Institute in Baltimore, and who is not associated with the new organization. "It will provide a sensible and long-awaited voice for those living with highly challenging conditions with overwhelming impact upon individuals, carers, and the larger community."

Prominent practitioners, professionals, and policy experts noted for successful real-world autism advocacy comprise the initial board of the NCSA. The group includes President Jill Escher, President of Autism Society San Francisco Bay Area and founder of Escher Fund for Autism (California), Vice President Feda Almaliti, who helped spearhead insurance reform in her state (California), Secretary Amy Lutz, founder of the EASI Foundation (Pennsylvania), Treasurer Alison Singer, founder and Executive Director of the Autism Science Foundation (New York), and board members Frank Campagna, a television producer and popular blogger (New York), Lisa McCauley Parles, Esq., a partner in Parles Rekem, LLP a law firm representing individuals with disabilities and their families (New Jersey), Dr. Gloria Satriale, executive director of Preparing Adolescents and Adults for Life (Pennsylvania), Dr. Matthew Siegel, Associate Professor of Psychiatry and Pediatrics of Tufts University School of Medicine, Vice President of Medical Affairs, Developmental Service, of Maine Behavioral Healthcare, and Faculty Scientist II at Maine Medical Center Research Institute (Maine), and Judith Ursitti, Director of State Government Affairs for Autism Speaks (Massachusetts).

The NCSA has published an initial set of Position Statements on important topics facing the autism community. These include: Guardianship, Vocational Options, Personal Safety and Abuse Prevention, Access to Appropriate Health Care and Crisis Care, Medicaid HCBS Residential Policies, Educational Placements, Need for Innovative Research.
The NCSA homepage features a sign-up block for its newsletters and updates. NCSA will also host accounts on social media, starting with Facebook and Twitter. The organization is planning to host a think tank on national adult autism policy as one of its initial efforts. "We have no intention to duplicate the vitally important work of other autism advocacy organizations," added Escher. "We aim only to add a strong voice for those who cannot speak for themselves."

NCSA has filed for Internal Revenue Code 501(c)(3) nonprofit status and will announce on its website if and when approval is received.

For more information:

Website: ncsautism.orgEmail: info@ncsautism.orgFacebook: https://www.facebook.com/ncsautism/Twitter: @ncsautismorg

Mail:

National Council on Severe Autism
PO Box 26853
San Jose, CA 95159-6853

Lifting the Virginia Age Cap

The Politics of Autism includes an extensive discussion of insurance.

A release from Virginia Delegate Robert Thomas:

Delegate Bob Thomas on Tuesday announced House Bill 2577, legislation to lift the age cap for autism coverage to help approximately 10,000 Virginians get access to needed healthcare. At a press conference, Delegate Thomas was joined by Speaker Kirk Cox and House Appropriations Chairman Chris Jones to discuss the legislation.

“This announcement has been a long time coming in Virginia,” said Speaker Kirk Cox (R-Colonial Heights). “The CDC now estimates that Autism impacts 1 in 59 children in our country, a number that is growing at 15% per year. I am proud of the work done by Delegate Bob Thomas and Appropriations Chairman Chris Jones to get us to where we are today.”

Currently, state law only says that health insurers must offer such coverage for individuals from age 2 through age 10. According to a January, 2013 report from Virginia Commonwealth University’s Autism Center of Excellence, the average age of diagnosis in Virginia is between six and seven years of age. This means for many diagnosed, they could only have three years of covered treatment before coverage could be limited.

“As a father of eight I know just how important ensuring children have access to quality healthcare is,” said Delegate Bob Thomas (R-Stafford). “Children did not choose to be born with Autism. We should do everything we can to continue to learn about the causes– but also provide treatment for those diagnosed regardless of age.”

No other prevalent health condition including– asthma, diabetes and cancer– has coverage limits imposed based on the age of the patient. Coverage for all other health conditions is based on medical necessity. The Department of Human Resource Management reports for State Health insurance plans this proposal will have an estimated fiscal impact of $237,00 – $118,500 is the state cost from our General Fund budget

“Watching every dollar the Commonwealth spends is one of my responsibilities that I take very seriously,” said House Appropriations Chairman Chris Jones (R – Suffolk). “But, compared to the services that will now be available to the Autism community and to the families who care for an autistic loved one – the cost is worth it.”

Autism, Vaccines, Measles, and the Ultra-Orthodox

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

At The Forward, Ari Feldman explains why there is a measles outbreak in New York's Hasidic community.

[S]ome ultra-Orthodox believe that there is a connection between vaccines and autism, despite the fact that the CDC says there is none. Major Orthodox rabbis have called vaccines “hoaxes” and cast doubt on their efficacy, including three who sit on the rabinnical board that guides Agudath Israel of America, the leading Haredi umbrella group.

Vaccine skepticism has spread from those leaders to their followers.

“I’ve been practicing medicine and doing research on this topic for years now and I am saying scientifically the truth is known but being covered up,” Yosef, a physician assistant from Crown Heights who was raised in the Chabad movement, a branch of Hasidic Judaism, wrote in an email.

Yosef, 35, said that although he and two of his five children are vaccinated, he believes vaccines cause more harm than good.

“Side effects include death, autoimmune diseases, autism and many things in between,” he wrote. “I don’t think, I know. CDC knows. $4 billion paid to parents by our government since 1986 knows.”

The Case for Inclusion and the Future of Services

In The Politics of Autism, I write:

The huge baby boom generation is now entering old age, so the number of Alzheimer’s patients will soar.  Competition for suitable workers could drive up the costs of care.   And those costs will rise just as overall government budgets are getting tighter.  The aging of baby boom generation will mean fewer workers paying taxes and more seniors drawing benefits, simultaneously squeezing revenues and expenditures at all levels of government.   “People assume the state will be there to help with their child,” financial planner John Nadworny says, “but that’s a really risky bet.”   

From United Cerebral Palsy and the ANCOR Foundation:

Published regularly, the Case for Inclusion assesses all 50 states and the District of Columbia on 30 measures that paint a picture on how well state programs serve individuals with intellectual and developmental disabilities (I/DD). These 30 measures are broken down into five key issue areas: Promoting Independence, Promoting Productivity, Keeping Families Together, Serving Those in Need and Tracking Health, Safety & Quality of Life.

Nationally, the Case for Inclusion 2019 finds:

• Nearly 424,000 individuals with I/DD—75,000 more than in the previous Case for Inclusion report—were on states’ waiting lists to receive Medicaid-funded Home and Community-Based Services.
• Only fourteen states and the District of Columbia had closed all large, state-operated institutions that warehouse individuals with I/DD.
• For the first time this year, the Case for Inclusion incorporates states’ participation in the National Core Indicators (NCI) staff survey into the scoring process that determines’ state rankings. Participation in this survey is critical as it helps shed light on what we know to be a significant workforce crisis among Direct Support Professionals, the frontline staff who make community integration possible. Twenty-four states had participated in the most recent NCI staff survey.
• Thirty-three states, one more than in 2016, meet what’s known as the 80/80 Home and Community Standard, meaning that 80% of all individuals with I/DD are served in the community and 80% of all resources support their ability to be part of the community and live in homes with fewer than seven residents.
• Just 16 states, up from 15 in 2016, support a large share of families (at least 200 families per 100,000 state residents) through support services that empower individuals with I/DD to remain living in their family home.
• Only 15 states, unchanged from the 2016 report, successfully placed at least 60% of individuals in vocational rehabilitation jobs.
• Just 15 states, also unchanged from 2016, report that at least 10% of residents with I/DD use self-directed services, which allow them to design the supports they receive based on their specific needs.

For the complete Case for Inclusion 2019 findings, download the report.

From the report:

Demographic trends increasing demand include the increase in Autism diagnoses,  increased longevity of people with I/DD, aging family caregivers needing more assistance to care for their loved ones with I/DD, and demand from baby boomers. Simultaneously,  fewer women are being born into the labor pool – and the DSP [Direct Support Professional] workforce is predominantly female. This promises unmet demand for support unless we take action soon.

How Tennessee Officials Responded to a Politician Spreading Vaccine Misinformation

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

Kimberlee Kruesi at Associated Press reports on how Tennessee's Department of Health responded to Mark Green, who had just won a US House seat and was spreading the bogus idea.  AP made a public records request and got emails.

Chief Medical Officer David Reagan shared a link to a story about the space agency extending an invite to Stephen Curry after the Golden State Warriors star denied humans had visited the moon. Curry quickly accepted the gesture and took back his comments, saying that he was joking, and believes the moon landing was no hoax.

"With regards to the statements by representative elect Green...an analogy from NASA," Regan wrote the morning of Dec. 13, attaching a link to NASA's invite.

"I like it," responded Tennessee Health Commissioner John Dreyzehner.

Dreyzehner then asked if Reagan was suggesting the department invite anyone to have their questions about vaccines answered by the chief medical officer.

"Yes, although I was specifically inviting Rep-elect Green," Reagan responded. "The discussion would likely be informative and helpful, and we may gain a friend."

Hours later, officials issued a blunt statement: "Vaccines do not cause autism. Vaccines save lives," along with an invitation, urging anyone with questions to contact the department. The brief statement didn't mention Green by name.

Hysteresis

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

A release from Dartmouth:

Why is it so challenging to increase the number of people who get vaccinated? How does popular resistance to vaccination remain strong even as preventable diseases make a comeback?

A new study from Dartmouth College shows that past problems with vaccines can cause a phenomenon known as hysteresis, creating a negative history that stiffens public resolve against vaccination. The finding explains why it is so hard to increase uptake even when overwhelming evidence indicates that vaccines are safe and beneficial.

A hysteresis loop causes the impact of a force to be observed even after the force itself has been eliminated. It's why unemployment rates can sometimes remain high in a recovering economy. It's why physical objects resist returning to their original state after being acted on by an outside force. And, according to the Dartmouth research, it's why the public resists vaccination campaigns for ailments like the common flu.

"Given all the benefits of vaccination, it's been a struggle to understand why vaccination rates can remain stubbornly low," said Feng Fu, an assistant professor of mathematics at Dartmouth College. "History matters, and we now know that hysteresis is part of the answer."

The research, published in the journal Proceedings of the Royal Society B, is the first study to demonstrate that hysteresis can impact public health.

From the article, "Imperfect vaccine and Hysteresis" by Xingru Chen  and Feng Fu:

Notably, in the aftermath of a sharp decline in vaccination coverage triggered by concerns regarding vaccine safety and efficacy, the recovery of vaccination rate from nadir to levels needed to attain herd immunity has been remarkably slow [39,40,55–59]. For example, it took almost 15 years for the recovery in the uptake of whole-cell pertussis vaccine from rock bottom 30% in 1978 to 91% in 1992 in England and Wales [55]. More recently, even though resurgent measles outbreaks impose huge risks for those unvaccinated, and even in some regions like France it has become an endemic disease [57,58], the coverage of measles vaccination has only gradually climbed up, but still remains insufficient, more than a decade after the infamous MMR vaccination and autism controversy [40,59]. It seems that the recovery of vaccination rate depends not just on the extent of mitigating perceived cost of vaccination and improving vaccine efficacy, but also on the past vaccination trajectory, hence possibly marring a rapid increase.