Disability and the Election

In The Politics of Autism, I discuss the role of this issue, along with broader concerns about disability, in presidential campaigns.  A recent post noted that the thing that bothers people most about Trump is his mockery of a disabled reporter.  One reason for this concern is that so many Americans either have a disability or know someone who does.

At Rutgers, Lisa Schur and Douglas Kruse have a paper titled "Projecting the Number of Eligible Voters with Disabilities in the November 2016 Elections."  Major findings:

• A projected 35.4 million people with disabilities will be eligible to vote in the November 2016 elections, representing close to one-sixth of the total electorate. 
• The number of eligible voters with disabilities has increased 10.8% since 2008, compared to an increase of 8.5% among eligible voters without disabilities. 
• There will be 62.7 million eligible voters who either have a disability or have a household member with a disability, more than one-fourth of the total electorate. 

California Vax Law Goes Into Effect, and Faces Court Challenge

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

Loretta Kalb reports at The Sacramento Bee:

Scores of Sacramento area students were sent home from school this week after they showed up for kindergarten and seventh grade without proof of vaccination.

In the Folsom Cordova Unified School District, 145 students out of about 3,200 starting kindergarten and seventh grade were sent home Tuesday on the first day of school for lack of immunization records, according to spokesman Daniel Thigpen.

A new state law that took effect July 1 eliminated personal- and religious-belief exemptions for families that opted to avoid vaccinations for their children. Under the new law, students entering the two checkpoint years of kindergarten and seventh grade are now required to show proof of vaccination. The requirement also applies to students who transfer into a district.

Jane Meredith Adams reports at EdSource:

 A federal judge in San Diego on Friday said he will take at least a week before ruling on a request to temporarily stop California’s new vaccination law, an unwelcome delay for vaccination opponents seeking a speedy injunction that would allow students who don’t meet vaccination requirements to start the new school year.

Judge Dana Sabraw said he was aware of the urgency of his ruling and asked about start dates for California schools, according to courtroom observers. Some schools in California have already opened their doors and the Los Angeles Unified School District, the largest district in the state, will begin school Aug. 16. Sabraw said he would likely issue a ruling the week of Aug. 22.

Rebecca Estepp, spokeswoman for Education 4 All, a Sacramento-based advocacy group that requested the temporary restraining order as part of its lawsuit seeking to overturn the law, called the delay “unfortunate” but somewhat understandable. “It’s a complicated topic,” she said. She described Sabraw’s manner during the oral arguments as “very thorough and very thoughtful” and said, “It was a fair hearing.”

The Politics of Insurance Mandates: Comparing North Carolina and California

The Politics of Autism includes an extensive discussion of insurance.

At Harvard Law & Policy Review, Ariana Cernius has an article titled "No Imbecile at All": How California Won the Autism Insurance Reform Battle, and Why Its Model Should be Replicated in Other States."  The abstract:

Autism is the fastest growing developmental disability in the United States today, with the Center for Disease Control and Prevention (CDC) reporting the incidence of autism at one in sixty-eight children. The cause and cure of autism remain unknown. Because autism affects each person at a different level of severity, a large number of symptom presentations are possible, making treatment difficult and costly. Despite the existence of effective, evidence-based early intervention treatments such as Applied Behavioral Analysis (ABA) therapy, which has lasting, long-term benefits and has been shown to improve functioning while reducing lifetime costs, the growing prevalence of autism has been declared a public health crisis by many states because those with autism who do not receive enough or any treatment are more dependent on society and have been recently estimated to cost $236 billion in care from childhood through adulthood. Due to receding state budgets, many states are not able to adequately address the autism population’s early intervention treatment needs through state-funded programs. Further, since health insurance did not cover treatment for autism until the Autism Insurance Reform Mandates that are the subject of this Note, families could not get treatment for their children with autism unless they were able to pay out-of-pocket. To provide a secure means of accessing treatment for people with autism, as of October 2015, forty-three states and Washington, D.C., have enacted autism insurance reform mandates requiring health insurance coverage of treatment for autism. While widespread existence of these mandates is surely progress and an acknowledgement of the problem, there is great legislative inconsistency among the mandates, which has created an imbalanced state of affairs for people with autism in the United States in that there are now some states that are better for autism families to live in than others. If the mandates are to accomplish their job of reducing the cost of the autism population to society in the long term, it matters equally as much that the appropriate evidence-based treatments are covered, and that the length of coverage is measured not by arbitrary criteria like age but by the continued efficacy of treatment, even if this means continued coverage through adulthood. Thus, there is still much work ahead to instill in society the notion that investing in the present to maximize the potential of the autism population will pay off in the long term for everyone in the country. This Note traces the issues that lead to the ongoing national autism insurance reform and offers insight as to how different modes of advocacy contributed to improving the lives of autism families in California, deemed one of the best states to live in for autism families. The goal of this Note is to compare how those strategies did or did not work in North Carolina, the most recent state to adopt a mandate, and to extend these lessons in social, political, and legal change to the remaining states that lack coverage or whose coverage could be improved in the states that currently provide coverage.

Happy to note that the article cites this blog.

Trump Pays a Price for Mocking a Disabled Person

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on disability issues more generally -- including his shameful mockery of a disabled journalist. A previous post showed an ad highlighting this incident.  It has hurt his candidacy. Irin Carmon reports at NBC:

When asked in a recent Bloomberg poll what bothered them most about Donald Trump — of a slew of controversies — likely voters picked one action above all others:

When the candidate mocked a reporter with a disability last November.

Democrats have made sure the public has seen and heard about Trump's extended riff over and over again. It has been played in ads created by the Clinton campaign, including a highly-circulated one involving children silently watching, and by groups working on Clinton's behalf.

Bill Clinton even said in his convention speech that his wife "never made fun of people with disabilities. She tried to empower them based on their ability."

And Clinton surrogate Tom Harkin, a prominent voice on disability policy, said recently, "Democrats believe in working together and bringing people with disabilities in to develop policy. Donald Trump? He makes fun of people with disabilities. That's a throwback to a half a century ago."

About ABA

In The Politics of Autism, I write:

As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding.  Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want.  ABA “works” in the sense that it helps some autistic people become more like their typically developing peers.  Most parents regard such an outcome as desirable, but not all people on the spectrum agree.  

Elizabeth Devita-Raeburn writes at The Atlantic:

Whether ABA is helpful or harmful has become a highly contentious topic—such a flashpoint that few people who aren't already advocates are willing to speak about it publicly. Many who were asked to be interviewed for this article declined, saying they anticipate negative feedback no matter which side they are on. One woman who blogs with her daughter who has autism says she had to shut down comments on a post that was critical of their experience with an intensive ABA program because the volume of comments—many from ABA therapists defending the therapy—was so high. Shannon Des Roches Rosa, co-founder of the influential advocacy group Thinking Person’s Guide to Autism, says that when she posts about ABA on the group’s Facebook page, she must set aside days to moderate comments.

...
Given the diversity of treatments, it’s hard to get a handle on the evidence base of ABA. There is no one study that proves it works. It’s difficult to enroll children with autism in a study to test a new therapy, and especially to enroll them in control groups. Most parents are eager to begin treating their children with the therapy that is the standard of care.
There is a large body of research on ABA, but few studies meet the gold standard of the randomized trial. In fact, the first randomized trial of any version of ABA after Lovaas’ 1987 paper wasn’t published until 2010. It found that toddlers who received ESDM therapy for 20 hours a week over a two-year period made significant gains over those who got the usual care available in the community.

That year, a report from the U.S. Department of Education’s What Works Clearinghouse, a source of scientific evidence for education practices, found that of 58 studies on Lovaas’ ABA model, only one met its standards, and another met them only with reservations.

Aging Caregivers

In The Politics of Autism, I write:

One California regional center serves 5,000 adult clients who live with their parents. “And every one of those clients will age,” says the center's executive director. “People who grew up in our system are now middle-aged, and their parents are older.” Adds Frances Gracechild, the executive director of Sacramento's Resources for Independent Living, “We have this phenomenon of aging parents with increasing need for support themselves, and they're still taking care of their grown developmentally disabled children. It's quite a burden to meet when you're facing your 70s.”

At Stateline, Jen Fifield writes of Beth Munro, 68, who cares for a severely disabled daughter.

About 860,000 people over 60 nationwide are in Beth’s place, caring for someone with intellectual or developmental disabilities in their home. And many are waiting, sometimes for years, for state-provided Medicaid help for their disabled child, sister or brother, such as placement in a group home, day services, or transportation or employment programs. If they can’t afford to pay for these services on their own, under the federal-state Medicaid system, their relative could end up in an institution.

As the number of older caregivers grows, and their need for help becomes more dire, a few states have passed laws to give older caregivers a chance to help decide where, and how, the person they care for will live. Tennessee passed a law in 2015 to ensure that anyone with an intellectual disability and a caregiver over 80 got the services they needed, and this year the state expanded the law to those with caretakers over 75. And in 2014, Connecticut passed a similar law that is helping about 120 people with a caregiver over 70.

But the waiting lists for needed services in these states and many others are still thousands of names long. In recent years, states such as Maryland, Virginia and Pennsylvania have put money into their budgets to try to chip away at the lists, and they get federal matching dollars to help pay for it. Some states are prioritizing people with urgent needs, while others are prioritizing students as they age out of school.

Vax Requirements Prevent Measles

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

At EdSource, Jane Meredith Adams reports that Mississippi has not had a case of measles since 1992, West Virginia since 2009. Now California joins them as the third state with strict vaccination school entrance rules. 

“It’s a good club to be in,” said Rahul Gupta, state health officer in West Virginia, who was effusive in welcoming California – home to more than eight times the number of children under the age of 18 as Mississippi and West Virginia combined – as a public health leader in school vaccinations, a role that the two Southern states have played for decades. “What we are seeing in West Virginia is a significant decline in vaccine-preventable diseases,” he said. “We expect the same in California.”

“We haven’t had a measles case in a schoolchild in decades,” said Thomas Dobbs, state epidemiologist in Mississippi, which has the highest school vaccination rate in the nation for measles, mumps and rubella with 99.7 percent of students receiving the immunization.
...
West Virginia instituted its vaccination requirements in 1987, has been strengthening them ever since and has never had a religious or personal belief exemption. Mississippi set its vaccination requirements in 1972, never had a personal belief exemption and ended its religious exemption in 1979, when the state Supreme Court ruled against such exemptions.

But in the ensuing decades, the fraudulent paper on the possible link between vaccinations and autism by Andrew Wakefield, a British doctor who was stripped of his medical license by a government review board, has sowed fear in parents and wreaked havoc on vaccination rates in Europe and, to a lesser extent, in the U.S. Both Gupta and Dobbs noted that it is far easier never to have had exemptions to vaccination requirements, or to have removed them decades ago, than to remove them in 2015 as California did.

The Education Department & Disciplinary Removals

In The Politics of Autism, I discuss the educational and civil rights of people with autism and other disabilities. 

The US Department of Education, Office of Special Education and Rehabilitative Services (OSERS) has a guidance letter on disciplinary removals:

Children with disabilities are at a greater risk of disciplinary removals that significantly interrupt their learning, often unnecessarily. These risks are increased for children of color with disabilities. In many cases, we have reason to believe these removals are due to minor instances of misbehavior that are unrelated to issues of child or school safety, and can and should be addressed through supports and guidance.

When behavioral supports are not provided and, as a result, a child with a disability is repeatedly removed from his or her current placement through suspensions for behavior that impedes his or her learning or that of others, a number of options are available to assist parents in challenging the appropriateness of their child’s IEP. First, as noted earlier, parents have the right to request an IEP Team meeting at any time, and public agencies generally must grant a reasonable parental request for an IEP Team meeting. Parents may be particularly interested in making such a request following changes in the child’s behavior that result in disciplinary removals. Further, parents, individuals, and organizations may also pursue child-specific or systemic remedies through the State complaint procedures outlined below.

When conditions persist and a denial of FAPE is suspected, a parent or a public agency may file a due process complaint to request a due process hearing on any matter relating to the identification, evaluation, or educational placement of a child with a disability, or the provision of FAPE to the child. 34 CFR §300.507(a). If the dispute cannot be resolved through the resolution process, the parent or public agency must have an opportunity for an impartial due process hearing. 34 CFR §§300.511(a), 300.512, 300.513 and 300.515.

A second important method for resolving disputes available under IDEA is the mediation process described in 34 CFR §300.506. The mediation process, which must be voluntary, offers a less formal opportunity for parents and public agencies to resolve disputes about any matter, including disciplinary removals, under 34 CFR part 300, including matters arising prior to the filing of a due process complaint. 34 CFR §300.506(a).

Lastly, States are also required to establish and implement their own State complaint procedures, separate from their due process procedures, for resolving any complaint that meets the requirements of 34 CFR §300.153. 34 CFR §300.151(a)(1). Any organization or individual, including one from another State, may file a signed written State complaint alleging that a public agency has violated a requirement of either Part B of the Act or the Part B regulations. Additional information regarding dispute resolution is available at: 

•  Questions and Answers on IDEA Part B Dispute Resolution Procedures, revised July 2013 (OSEP Memo 13-08) (http://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/acccombinedosersdisputereso lutionqafinalmemo-7-23-13.pdf); and

• Dear Colleague Letter on a public agency’s Use of Due Process Procedures After a Parent Has Filed a State Complaint, April 2015 (https://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/dcl04152015disputeresoluti on2q2015.pdf)

A Bill to Help with Waiting Lists

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

A Friday release from Illinois State Senator Tom Cullerton:

State Senator Tom Cullerton’s initiative to help nearly 20,000 Illinois families on waiting lists for developmental disability services was signed into law today.

House Bill 6086, sponsored by Cullerton in the Senate, will require the state to take certain factors into consideration when determining which individuals will receive services, such as the amount of time spent already on a waiting list.

“Any time we can pass legislation to help our developmentally disabled population, it makes us a stronger and better state,” said Cullerton, a Villa Park Democrat.

House Bill 6086 is an initiative of Autism Speaks. The organization approached Cullerton for assistance because of the difficulty that families face when they spend a significant amount of time on the state’s Prioritization of Urgency of Need for Services (PUNS) waiting list to receive services for developmentally disabled family members.

“I would like to thank Senator Tom Cullerton and Gov. Rauner for being supportive of House Bill 6086,” said Mike Baker, volunteer state advocacy chairman for Autism Speaks. “I hope that it will be the first of many steps to expand and improve services for people with autism and all developmental disabilities in Illinois.”

PUNS is a statewide database with information about individuals with developmental disabilities who seek state services. The database does not function as a first-come, first-served service; enrollments are categorized by need, and families with immediate needs are served first.

House Bill 6086 passed the Senate and House with bipartisan support.

Stephanie Kifowit sponsored the bill in the Illinois House. 

How Vaccine-Autism Misperceptions Spread

At The International Journal of Communication, Jill A. Edy and Erin Risley-Baird have an article titled "Misperceptions as Political Conflict: Using Schattschneider’s Conflict Theory to Understand Rumor Dynamics." They examined online commentary about vaccines and autism. The abstract:

Publicly confronting political misperceptions enacts political conflict, generating communicative forms of public resistance as well as psychological resistance. Applying Schattschneider’s classic model of interest group political conflict to communication by those who publicly resisted messages debunking the misperception that vaccinations can cause autism offers insight into how misperceptions evolve and survive in public discourse. It also extends the model, establishing its relevance for contemporary forms of political conflict. Faced with debunking, believers socialize conflict, inviting audiences  o join the struggle on their side, and alter the debate’s terms such that discussion escapes  ontrol by authorities. The resulting political debate is a moving target with changing  tandards of evidence. Consequently, confronting political misperceptions may generate activism that encourages misperceptions to evolve and spread.

From the article:

The conflict over whether vaccines are linked to autism began as a scientific debate  mong medical professionals, but as misperception believers got involved, those professionals lost control of the fight. In seeking access to the conflict, the believer  ommunity redefined its logic. No longer could the debate be limited to the scientific merit of Wakefield’s study. Instead, personal experience competed with scientifically generated knowledge as the ultimate truth standard. Charges of spreading false or wrong  nformation were met with charges of denying personal freedom to question authority and speak out. The scientific community had lost control over the standards by which information was judged.

...

Understanding political misperceptions as cases of political conflict in which communication processes matter helps explain why misperceptions are so difficult to eradicate. Prior misperception research demonstrates debunking messages can produce substantial psychological resistance, but this analysis reveals the remarkable social dynamism of the rumoring process when confronted with authoritative debunking in the postmodern era. Communicative resistance to debunking messages is not a matter of stubbornly reiterating a misperception. It involves creative, persuasive discourse that modifies the misperception and shifts the relevant audience of potential believers. Viewed in this light, the search for a single message or type of message that would effectively debunk a misperception seems fruitless. Effective debunking, like rumoring itself, is likely a process that adapts to the changing social conditions in which discourse about the belief occurs. The problem is not simply the motivated reasoning of misperception believers. The discourse itself represents a moving target with no fixed standards of evidence or truth that might support factual debunking. When debunking messages are introduced into the discourse, the social dynamic of the conflict evolves to raise new questions and evoke different standards of evaluation (what Schattschneider would call altering the lines of cleavage) and to invite new participants (what he would call socializing).

Earlier Diagnosis Means Better Treatment

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

A release from the American Psychiatric Association:

Diagnosis of autism spectrum disorder before the age of 4 means that a child is more likely to get effective, evidence-based treatment, such as behavioral therapy. When children are diagnosed at after that threshold, they are less likely to receive such treatment, but they are more likely to be treated with medication, according to research published online today in Psychiatric Services in Advance.

In addition, delays of more than two years between when parents first discuss concerns with a provider and receiving an autism diagnosis were associated with higher use of complementary and alternative medicine, which is considered more controversial.

The strongest evidence for effective treatment for autism is for behavioral intervention therapy directed at core autism symptoms, such as social skills and inflexible behaviors. Early intensive treatments may have long-term benefits for children’s functioning. Other therapies, including complementary and alternative medicine and medication treatments for autism, are more controversial and are not as strongly supported by scientific studies.

Researchers, led by Katharine Zuckerman, M.D., M.P.H., with Oregon Health and Science University, in Portland, assessed the experiences of 722 children ages 6 to 11 with autism spectrum disorder. They looked at use of health services, including behavioral intervention therapy, school-based therapy (including social skills training, occupational therapy, physical therapy, or speech and language therapy), complementary and alternative medicine (such as nutritional supplements), and psychotropic medications (such as antidepressants and medications for attention-deficit/hyperactivity disorder (ADHD)).

On average, parents first discussed developmental concerns with a provider when the child was just over 2 years old, and the average age at autism diagnosis was more than 4 years. Use of complementary and alternative medicine was nearly twice as common among children with longer versus shorter delays (21 percent and 11 percent, respectively). The American Academy of Pediatrics recommends that all children be screened for autism at 18 months and at 24 months, yet only about half of primary care practitioners screen for autism. A diagnosis of autism can typically be made by age 2. The average age at diagnosis in the United States is more than 4 years old.

Researchers concluded that efforts to increase early autism diagnosis may result in greater use of effective autism-related therapy and improved functional outcomes for children with autism spectrum disorder.

An Autism Dad Speaks on Trump

In The Politics of Autism, I discuss the issue's role in presidential campaigns. 

Amy Poulter reports at The Virginian-Pilot:

Dave Belote, a retired Air Force colonel and one-time candidate for the 8th state Senate District seat, said Trump’s character is too dangerous and called the possibility of a Trump presidency an “absolute disaster.” Belote said he watched a live streaming of a speaking engagement Trump was at today in which the candidate stated he would be “so good” for veterans. Belote absolutely refutes the claim and said Trump is "unfit to catch a dog."

Belote said what really upset him, though, was when Trump last year mocked a reporter with a disability. Belote has a son with autism.

“This person is supposed to be assuming the mantle of leadership? No, thank you,” Belote said.

GAO Report on Federal Autism Activities

In The Politics of Autism, I write:

No government agency has exclusive jurisdiction over all of these areas. The federal government takes the lead with some, while states and localities may be the main arenas for others. At each level, different bureaucracies deal with different aspects of autism. Courts and private organizations also play important roles in autism policymaking. Each place on the autism policy map has its own jargon and rules, hence the “alphabet soup” that bedevils parents.

The US Government Accountability Office has a new report on federal autism activities.  The summary:

Federal agencies have taken various actions to encourage early autism identification and interventions, such as specifically soliciting research in these areas. From fiscal year 2012 through fiscal year 2015, the departments of Defense (DOD), Education, and Health and Human Services (HHS), awarded about $395 million for research on early identification and interventions for autism.

Federal programs provide a variety of intervention services to young children with autism. When examining the education programs administered by five states and DOD, GAO found that specific actions were taken to help respond to the individual intervention needs of children with autism. Children enrolled in federal health care programs—Medicaid, the State Children’s Health Insurance Program (CHIP), or TRICARE—received a variety of interventions. For example, GAO identified about 8,200 young children with autism in five states enrolled in Medicaid or CHIP and found that speech, language, and audiology services were the most common overall; however, the types of services commonly received varied, depending on the age of the child. Percentage of Total Intervention Services by Service Category, for Medicaid and CHIP Beneficiaries Identified with Autism Ages 1 through 5 in Selected States, Fiscal Year 2013

HHS has recently taken actions required by the Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 (Autism CARES Act) that could help coordinate federal autism research and implement GAO’s prior recommendations. For example, in April 2016, HHS designated an autism coordinator to oversee national autism research, services, and support activities. In 2013, GAO reported that there was limited coordination among agencies. This was especially concerning because GAO also found that 11 federal agencies funded autism research in the same areas—resulting in the potential for unnecessary duplication. At that time, GAO recommended that HHS improve the data it collects on autism research and that federal agencies develop methods to monitor and coordinate this research. GAO believes that HHS’s continued fulfillment of certain provisions in the Autism CARES Act could help the department implement GAO’s 2013 recommendations.

From the report:

Data reported to Education from 49 states and the District of Columbia indicate that approximately 66,000 children ages 3 through 5 with autism received services in school year 2014-2015. However, this is likely an undercount of the children with autism receiving special education services, because children with autism may not be reported to Education under the autism disability category. For children enrolled in special education programs, states are required to report to Education the number of children receiving services by disability category, including  autism. However, states may use a general disability category, “developmental delay,” when reporting, either because the child may not yet be diagnosed with autism, or the child may be diagnosed, but the parents prefer to use the general disability category for privacy purposes. Further, communication difficulties are a typical symptom of autism, and Education, DOD, and some state officials also told us that children with autism may be reported under the disability category “speech and language impairment.” Children who are placed in the “developmental delay” or “speech and language impairment” category would not appear in the autism category. Certain states’ use of disability categories may also influence the number of children with autism reported by the state. For example, California and Texas do not allow the use of the “developmental delay” category. Ohio pays its school districts based on the number of children served and their disability categories; school districts get more funding for students in the “autism” disability category than those in the “developmental disability” category. See appendix II for the number of children ages 3 through 5 in states’ special education autism category, by state, in school year 2014-2015.

The actual number of children with autism receiving early intervention services is also unknown. States are required to report to Education the total number of children served under early intervention programs, but not by disability category. DOD also does not collect these data. DOD and Education officials both stated the specific disability designation of a child does not dictate the types of early intervention services that a child receives. Further, it is common for children under age 3 to not have a specific diagnosis.