Most Undereported 2017 Story: Trump Betrays Antivax Movement .. So Far

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

During the presidential campaign, Donald Trump thrilled the antivaccine movement by suggesting that vaccines cause autism.  He met with some of its leaders including the notorious Dr. Andrew Wakefield, whose fraudulent research fueled antivaccine sentiment and eventually led the UK's General Medical Council to strike him from the medical register.  After his victory, he reportedly asked Robert F. Kennedy, Jr., another antivaccine leader, to chair a commission on "vaccine safety."  It appeared that the movement's hour had come round at last.

Then Trump failed to follow through.  He never established a vaccine safety commission.  His nominee to head the Food and Drug Administration said at his confirmation hearing that there is no causal link between vaccines and autism.  Similarly, his nominee for director of the Centers for Disease Control and Prevention said that studies purporting to show a link between vaccines and autism had been "debunked." In his greatest affront to the antivaccine movement, he named the former president of Lilly USA to be secretary of Health and Human Services. The company is a subsidiary of Eli Lilly, which not only makes vaccines, but also developed thimerosal, the preservative that the movement falsely identified as the culprit.

Trump probably has not seen the error of his previous position.  It is more plausible that he just does not care one way or the other. Amid all the drama of his administration, it is unsurprising that his quiet betrayal of a fringe group has not gotten much attention.  He has betrayed nearly everyone who has ever trusted him.  In this one case, though, that is a good thing.

Aging Autism

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.

Parents of aging autistic people often say "I can't die."

At the Philadelphia Inquirer, Ronnie Polaneczky has a series titled "Falling off the Cliff."  Part 2 examines direct-support professionals.  Part 3 looks at the employment challenges facing disabled people.  And part 4 looks at what happens to them when they get older.

Adult children with intellectual and developmental disabilities can wind up with family unprepared to care for them. Or in a nursing home whose staff are unfamiliar with their complicated medical or behavioral diagnoses.

Or, worse, they can fall victim to predators such as Linda Weston, who coerced intellectually disabled adults into making her the payee of their Social Security benefits. In return, she and a handful of conspirators subjected the vulnerable men and women to unspeakable abuse: chained captivity, beatings, neglect, forced prostitution, starvation, and death. In 2015, Weston was sentenced to life plus 80 years in prison for the atrocities she directed in what was dubbed the "Tacony House of Horror."

"Abuse is a very, very big concern," says California attorney Thomas Coleman, author of "Abuse of People with Disabilities: Victims and Their Families Speak Out." The shocking 2012 report from the Disability and Abuse Projectfound that 70 percent of all people with disabilities have been abused at some point in their lives. Those with intellectual or developmental disabilities are victimized at an even higher rate, Coleman says.

"If you're in a wheelchair or blind, you can still scream or shout if you're being hurt," says Coleman, an attorney and disability rights advocate. "But if you have an intellectual or developmental disability, you're less likely to be believed if you complain, or you may be unable to complain. Those cases are especially hard to prosecute."

Employment, Sheltered Workshops, and the Cliff

At the Philadelphia Inquirer, Ronnie Polaneczky has a series titled "Falling off the Cliff."  Part 2 examines direct-support professionals.  Part 3 looks at the employment challenges facing disabled people such as an autistic young adult named Eric Heppard.  His parents needed him to take an IQ test to qualify for a Medicaid waiver.  He scored 81, higher than they expected.  That was bad news.

The old rule of thumb said that an IQ higher than 70 made a candidate with an I/DD ineligible for sheltered work in Pennsylvania. But in the last decade or so, there has been a slow shift to a holistic view of candidates — though a handful of states, including
Pennsylvania, have been slow to embrace it, says Celia Feinstein.

"Other states have moved to a more functional definition of developmental disability," says Feinstein, executive director of Temple University's Institute on Disabilities. "For example, you may have an IQ of 90, but if you need support with your activities of daily living, you're probably as disabled as someone whose IQ is 68."

Three years ago, that broad interpretation wasn't made in Pennsylvania, which proved to be Eric's undoing: testing showed that his high IQ rendered him ineligible for the APS program. [Associated Production Services, which runs sheltered workshops] Basically, he was not disabled enough to meet hiring and program criteria for sheltered employment.

"The job fell through our fingers like sand," says Lisa, still sounding shocked. "Everyone said their hands were tied. Eric was devastated."
...

There's a national effort to phase out sheltered workshops — like those run by APS, where Eric had hoped to work — because the disabled people they employ are just as segregated from the greater community as disabled people once were in residential institutions. There's even a U.S. Supreme Court ruling, the 1999 Olmstead decision, that says that people with disabilities should work, live, and receive services in the most integrated setting possible.

That's caused a shrinkage in the number of United States sheltered workshops from 3,350 in 2010 to 2,638 in 2016. Currently, about 369,700 disabled adults are employed in sheltered settings, according to the Department of Labor.

While many adults with I/DD, such as Michael Urtz and Julia Tyler, may be thriving in their community-based jobs, such arrangements don't work for everyone, say advocates for adults for whom sheltered work has been a godsend. Their children feel safe from bullying, receive special services and enjoy kinship with coworkers who are similarly disabled.

Abandonment at the ER

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

Josh Kovner at The Hartford Courant reports on a Catch-22 in Connecticut law.  Some parents are going to emergency rooms to abandon children with autism and other developmental disabilities.  The Department of Developmental Services consider such children "safe" because they are receiving care in a hospital, so they do not qualify for emergency placement.  But the hospitals cannot safely discharge them or provide them with the services that they nee

The abandonments “break your heart — because as a mother, you’d cut off an arm to not have to do that, right?’’ said Leslie Simoes of West Hartford, a mother and co-director of Autism Services and Resource Center in Wallingford 

“Well, it shows how the system has fractured. We have seen more of these abandonments in the last few years, but I’m surprised there aren’t a lot more, because there easily could be. Families who have been denied services are pushing beyond the edge, to bankruptcy, divorce or even homelessness,” to continue to care for a son or daughter with developmental disabilities.

Texas Medicaid Refuses to Cover ABA

In The Politics of Autism, I discuss special education and  state Medicaid services for people with intellectual and developmental disabilities.  Some states do a reasonably good job, but Texas is not one of them.

Julie Chang at The Austin American-Statesman:

“We talk to hundreds of families every year and a large majority of them need access to ABA therapy,” said Suzanne Potts, executive director of the Autism Society of Texas. “If they’re a Medicaid family, it’s even more disheartening to have to tell them there’s nothing for them. They have to choose between paying their bills and paying for therapy for their child.”

Some of these same Texas children are also blocked from some therapy services for children with disabilities, after deep cuts in health care spending by the Republican-dominated Legislature in recent years.

About 22,000 Texas children with autism are covered by Medicaid. A small number of families are paying for the therapy at full cost, which typically ranges from $50 to $100 per hour. An additional 700 families or so are in a state autism program that offers the therapy at little to no cost to families but at a level far below the recommended 25 to 40 hours a week.

Carrie Williams, spokeswoman for the Texas Health and Human Services Commission, said that, given the high cost of applied behavior analysis therapy, the agency needs the Legislature to approve money to fund it through Medicaid.

...
Disability Rights Texas and Texas RioGrande Legal Aid sued Texas on behalf of three San Antonio boys with autism last December. Under a settlement reached this month, the children in the case can receive applied behavior analysis therapy for at least two years, and the state avoided a ruling that could have required Texas Medicaid to offer the therapy to everyone who needs it, according to Peter Hofer, an attorney for Disability Rights Texas.

The Economic Case for Hiring and Keeping Employees with Disabilities

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities.

Laura Sherbin and Julia Taylor Kennedy write at The Harvard Business Review:

A new study from the Center for Talent Innovation (CTI) found that, according to the 2015 US government’s definition of disability, a significant portion of the white-collar workforce has a physical or mental impairment that substantially limits a major life activity: 30% of a nationally representative survey of 3,570 white-collar employees. The numbers are similar across gender, race, and generation. Not only do employees with disabilities comprise a large talent pool, it’s a remarkably innovative one: 75% of them report having an idea that would drive value for their company (versus 66% of employees without disabilities). Yet, we find, individuals with disabilities frequently encounter workplace discrimination, bias, exclusion, and career plateaus—meaning their employers lose out on enormous innovation and talent potential.

Many people are surprised to learn that such a high rate of employees have disabilities, because they generally assume that “disability” means having an obvious physical condition. However, close to two-thirds of the study’s respondents have a disability which, while included under the federal definition, is invisible. These might include diseases like lupus or Crohn’s, whose flare-ups are incapacitating; migraines, which can cause temporary blindness; mood disorders like depression; learning disabilities like dyslexia; developmental differences like autism; and other forms of neurodiversity. Some 62% say that unless they deliberately disclose their disability, most people have no idea it exists.

Accurate Beliefs About Vaccinations

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

At American Politics Research, Mark R. Joslyn and Steven M. Sylvester have an article titled
"The Determinants and Consequences of Accurate Beliefs About Childhood Vaccinations/" The abstract:

In this article, we examine the individual predictors that are responsible for accurate beliefs about the link between vaccinations and autism. We then show how these beliefs affect policy preferences about vaccines. We derive two hypotheses from motivated reasoning theory and test these on national survey data from Gallup and CBS News. Republicans were less likely to report accurate beliefs than Democrats. In addition, educational attainment modified the impact of party identification. The gap between Republicans and Democrats in likelihood of reporting accurate beliefs was largest among the most educated portion of the public. Finally, we show that accurate beliefs about vaccines, independent of statistical controls, are important predictors of policy attitudes about unvaccinated children attending public school and parental choice about the decision to vaccinate. We discuss the theoretical and practical significance of these findings.

Collett Confirmed

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

At Education Week, Christina Samuels reports that the Senate confirmed Johnny Collett as assistant secretary of education for special education and rehabilitation services.

Students in special education who accept vouchers to attend private school lose the individual protections granted under the Individuals with Disabilities Education Act; Democrats have argued that U.S. Secretary of Education Betsy DeVos' support of such vouchers will ultimately end up causing harm to these students. Collett said during his hearing that he would work with the secretary and others to respond to a recommendation from the Government Accountability Office that parents be provided accurate information about the impact of accepting a voucher.

Autistic Adults Make Recommendations for Accommodations for College

 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.

 At The Journal of Autism and Development Disorders, Jennifer C. Sarrett has an article titled
"Autism and Accommodations in Higher Education: Insights from the Autism Community."  The abstract:

This article builds on the growing body of research on higher education for autistic students by soliciting input from autistic adults on their higher education experiences and suggestions on making these experiences more ‘autism-friendly’. Sixty-six individuals participated in a national exploratory survey and thirty-one participated in follow-up, online focus groups. The article reviews the accommodations individuals received and the accommodations they would have liked to receive. Concrete strategies are provided for institutes of higher education to address the social and sensory needs of autistic students, areas many participants reported being neglected in their academic experience, such as mentors and a neurodiverse space. These suggestions are intended to complement traditional academic accommodations to improve the outcomes of autistic students.

Recommendations from the participants:

Social accommodations

• Disability support group with low-impact, sensory friendly events organized around the interests of the individuals in the group
• Peer mentors trained on neurodiversity and autism to encourage and attend social events with, check-in regularly, and answer questions about interactions with peers
• Mediators trained in neurodiversity, autism, and mediation to help with interactions with staff and faculty

Neurodiverse space

• Physical space for social gatherings, sensory time, and/or escape room with low lighting, low noise, and a policy of no strong smells
• Sensory time should allow and encourage multi-sensory engagement and multiple seating options Available, quiet space with noise cancelling headphones where students can be alone for some time

Other recommendations

• Staff, faculty, and administration training on autism, neurodiversity, and accommodations for in and out of the classroom.
• Autism awareness programing for peers
• More inclusion of autistic feedback on program development
• Disability focused suicide prevention programs
• Autism awareness programing for peers

Kevin and Avonte's Law Passes Senate

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

A release from Senator Charles Grassley (R-Iowa):

Bipartisan legislation to help families locate missing loved ones with Alzheimer’s disease, autism and related conditions has unanimously passed the U.S. Senate. Kevin and Avonte’s Law (S. 2070), named in honor of two boys with autism who perished after wandering from safety, would also support training for caregivers to prevent and respond to instances of wandering. The bill, led by Senate Judiciary Committee Chairman Chuck Grassley (R-Iowa), Senator Amy Klobuchar (D-Minn.) and Senator Thom Tillis (R-N.C.), is now pending approval in the U.S. House of Representatives.

“The feeling of dread and helplessness families must experience when a loved one with Alzheimer’s or autism goes missing is unimaginable. But when communities are empowered to lend a hand, these terrifying situations can have happy endings. Kevin and Avonte’s Law, named for a boy from Jefferson, Iowa and a boy from New York City, makes resources available for technologies that advance the search for missing children, along with specialized training for caregivers and first responders to help prevent wandering by vulnerable individuals,” Grassley said. “I look forward to its swift passage in the House of Representatives.”

“We need to do everything we can to make sure that kids like Hamza Elmi from St. Cloud – and all people with a developmental disability or a form of dementia – make it home safely,” Klobuchar said. “Passing this bipartisan bill into law will mean first responders, law enforcement officers, caregivers, and Minnesota families will have access to the technology, resources, and training they need to prevent wandering and find missing people.”

“I’m pleased to see the Senate unanimously pass Kevin and Avonte’s Law, which will support training for caregivers to prevent and respond to missing individuals with Alzheimer’s disease, autism, and related conditions,” said Tillis. “This legislation has a deep personal meaning for me, as I was a caregiver for my grandmother during her battle with Alzheimer’s disease. We should be moving heaven and earth to help families and caregivers reunite with loved ones who wander and disappear, and Kevin and Avonte’s Law can truly make a difference in preventing tragedies and give families across America a greater peace of mind.”

Information on the introduction of this legislation is available HERE, a bill summary can be found HERE and full text of the legislation can be found HERE.

In addition to Senators Grassley, Klobuchar and Tillis, the bill is also sponsored by Senators Chuck Schumer (D-N.Y.), Dick Durbin (D-Ill.), Richard Burr (R-N.C.), Chris Coons (D-Del.), Dianne Feinstein (D-Calif.), Patrick Leahy (D-Vt.), Chris Van Hollen (D-Md.), Joe Donnelly (D-Ind.), Kirsten Gillibrand (D-N.Y.) and Tammy Baldwin (D-Wis.)

Sessions Revokes Statement on the Olmstead Integration Mandate

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

On December 8, 2016, this blog explained that Trump and Sessions both have bad records on disability issues.

Now, at a time when the holiday season is distracting Americans and many reporters are on vacation, the Sessions DOJ makes a move.  Charlie Savage at NYT:

Attorney General Jeff Sessions announced Thursday that he had revoked more than two dozen documents that interpreted and explained a wide range of federal laws, including guidelines on storing explosives and accommodating people with disabilities.

The 25 rescinded documents cover more than 200 pages and date back as far as 1975. They include a Reagan-era “industry circular” by what is now known as the Bureau of Alcohol, Tobacco, Firearms and Explosives saying it was illegal to ship certain guns to buyers across state lines, and an Obama-era letter urging state and local judges not to impose fines and fees in a way that locks poor people into cycles of debt and prison.

Mr. Sessions said the documents improperly went beyond explaining existing laws, and instead essentially created new rules — circumventing the regular process for creating regulations, which can include public hearings and comment periods.

...

One letter affected by the decision had been issued by the Justice Department’s Civil Rights Division in October 2016. It advised public programs for employing people with developmental disabilities to modify their policies and practices, where reasonable, to better integrate their beneficiaries into mainstream workplaces in order to comply with a 1999 Supreme Court ruling about the Americans with Disabilities Act.

“The civil rights of persons with disabilities, including individuals with mental illness, intellectual or developmental disabilities, or physical disabilities, are violated by unnecessary segregation in a wide variety of settings, including in segregated employment, vocational and day programs,” the letter said.

The Justice Department scrubbed the statement from its website.

On November 3, 2016, this blog excerpted the statement:

A core purpose of the ADA is to “assure equality of opportunity, full participation, independent living, and economic self-sufficiency” for individuals with disabilities.1 The integration mandate of Title II of the ADA is intended to allow individuals with disabilities to live integrated lives like individuals without disabilities, including by working, earning a living, and paying taxes. The civil rights of persons with disabilities, including individuals with mental illness, intellectual or developmental disabilities, or physical disabilities, are violated by unnecessary segregation in a wide variety of settings, including in segregated employment, vocational, and day programs.

Since the passage of the ADA and the Supreme Court’s decision in Olmstead, the ADA’s Title II integration mandate has been applied in a variety of contexts. The ADA’s integration mandate applies to all the services, programs, and activities of state and local governments, including their employment service systems.2 This guide discusses and explains the requirements of the ADA integration mandate and Olmstead as applied to employment service systems for individuals with disabilities. It complements and supplements, but does not supersede, the “Statement of the Department of Justice on Enforcement of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C.” (June 22, 2011).3

Disability Community v. Tax Bill

The Politics of Autism includes a discussion of tax issues.

The Autistic Self Advocacy Network:

ASAN strongly condemns the final passage of the Tax Cuts and Jobs Act (TCJA), a tax giveaway for corporations and the wealthiest Americans which comes at great cost to the disability community. This law will take away health care from an estimated 13 million people. By drastically reducing tax revenue, it sets the stage for massive cuts to Medicaid, Social Security, and other essential services that allow people with disabilities to live good lives in our communities. The disability community cannot afford these cuts. For those who will lose access to lifesaving care and basic services, the price of this law is far too high.

Ignoring the clear will of the American people, the final version of TCJA repeals the individual mandate from the Affordable Care Act (ACA), which has helped to make insurance more affordable, especially for people with disabilities. The bipartisan Congressional Budget Office estimates that 13 million people will lose access to affordable coverage as a result. Nonetheless, despite the loss of the individual mandate, the Affordable Care Act itself remains the law of the land. ASAN will fight to mitigate the impact of this decision, and will continue to work to implement the Affordable Care Act and ensure that people with disabilities, our families, and all people have access to comprehensive and affordable health care.

Both the Administration and Congressional leadership have stated repeatedly in recent weeks that, to pay for these tax breaks, they will once again move to cut basic programs and services. The disability community is facing a full-scale attack. Medicaid, Medicare, and Social Security will all be on the chopping block – but this battle is far from over. We call on the disability community to mobilize for the fight for our lives.

The Autism Society:

Bethesda, Maryland. December 20, 2017 — Today, the House of Representatives and Senate passed a massive tax bill that will have a long-lasting impact on our debt, health care, and long-term services and supports for people with disabilities. The non-partisan Joint Committee on Taxation estimated that the bill will add nearly $1.5 trillion to the deficit in its first decade. In addition, according to the Congressional Budget Office, the bill will result in 13 million fewer people being covered by health care and will raise premiums by about ten percent. The President has said he will sign the bill.

Unfortunately, this could be just the beginning. The Autism Society is extremely concerned the Congress will next turn to making massive cuts to safety net programs that are critical to individuals with autism and other disabilities and the families that support them: Medicaid, Medicare, Social Security Income, Disability Insurance, and other supports. The budget resolutions considered earlier by the House and Senate directs committees with jurisdiction over Medicare, Medicaid and Social Security to make cuts in the billions to those programs. It is difficult to imagine how these cuts can be realized without making fundamental alterations and life-threatening cuts to these critical programs.

There are other threats, too, for the disability community, particularly attacks on the Americans with Disabilities Act and other civil rights laws, important guidance and regulations that support people in the community, as well as cuts to other discretionary programs that will impact research, early intervention, education, and employment services that assist people with disabilities to be productive and independent.

The Autism Society will be vigilantly watching and advocating for the protection of the rights and programs that support people with disabilities. We will galvanize our strong grassroots network of individuals with autism, families, and allies to make our voices heard and keep policymakers accountable.
###

The Arc:

“Today both chambers of Congress rushed to pass an irresponsible tax plan. By reducing revenue by at least $1.5 trillion, the Tax Cuts and Jobs Act increases the pressure to cut Medicaid and other programs that are critical to the lives of people with intellectual and developmental disabilities. Each vote in favor of this bill was a vote against constituents with disabilities and sets the wheels in motion to quite possibly go back in time to an era when people with disabilities had little opportunity to live a life of their choosing, in the community.

“The Tax Cuts and Jobs Act was crafted behind closed doors and the final draft of this bill was only released publicly on Friday. The rush by the Senate to pass this bill mere hours after the House of Representatives vote makes it clear that the architects of this bill were trying to hide something from the American public.

“This year the disability rights community has endured ongoing Congressional attacks that could have jeopardized the health and well-being of individuals with intellectual and developmental disabilities. And now, thanks to the enormous revenue losses that will be created by this bill, we must prepare to protect critical programs like Medicaid which will likely be on the chopping block in 2018. We are grateful to the Members of Congress who stood up for their constituents with disabilities by opposing this bill and we look to them as our greatest allies as our fight continues. While this bill must return to the House of Representatives once more, it is expected to be signed into law. Passage of this bill will not change the resolve of The Arc’s network. As we have shown time and time again, we are a force to be reckoned with. We will remain active in our opposition to attacks on the basic rights and health of people with disabilities and their families,” said Peter Berns, CEO, The Arc.

Consortium for Citizens with Disabilities:

 The Fiscal Policy Task Force of the Consortium for Citizens with Disabilities, the nation's largest national organization representing over 56 million individuals with disabilities, is deeply disappointed by the House and Senate passage of the conference agreement on the Tax Cuts and Jobs Act.

This legislation will result in 13 million fewer Americans with health insurance and will cut Federal revenue to such an extent that it will likely lead to huge cuts in Medicaid, Medicare and other programs people with disabilities rely on to live independently in the community.

“The President and Congressional leaders have said they would protect Medicare, Medicaid, and Social Security when they were campaigning for office. We will hold them accountable for those statements,” said Kim Musheno, Chair of the Consortium for Citizens with Disabilities.

“The public will soon have time to fully understand the impact of this legislation that has been rushed through Congress and whether its many promised benefits ever materialize.”

Medicaid in South Carolina

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities. 

South Carolina has low Medicaid reimbursement rates for ABA.  At The Post and Courier, Lauren Sausser reports:

Next year, this may change. S.C. Medicaid Director Joshua Baker wants to spend another $13.1 million during the 2018-2019 budget year to increase the reimbursement rate for ABA therapy from about $17 an hour to $24 an hour. If approved by the General Assembly, most of these new costs would be paid for by the federal government.

"What we’re committed to doing is monitoring the market and continuing to adjust our reimbursement," said Baker, who was named the new Medicaid director in November.

This increase is a step in the right direction, but it's not enough, said Lorri Unumb, vice president for state government affairs at Autism Speaks, a national advocacy group. Georgia, like North Carolina, also pays providers $50 an hour for Applied Behavior Analysis, she said.

"I think providers (in South Carolina) were hoping to get around the $40 mark," Unumb said. "I think we could do better, but I’m very appreciative that the state has taken note of the issue."

The state Medicaid agency is ushering in another big change this month. For years, children with autism in South Carolina only qualified for government benefits through a waiver program called the Pervasive Developmental Disorder Program.

But that program, administered by the S.C. Department of Disabilities and Special Needs, capped participation at 750 children at any given time. Hundreds of others who needed help were relegated to a waiting list.

Later this month, that waiver program will close. Any child diagnosed with autism who applies and qualifies for benefits will now receive them directly through the Medicaid agency.

Another Takedown of Another Antivax Myth

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

Amy Sherman at PolitiFact.com:

The federal government tried to hide that a common vaccine given to children causes autism, according to a misleading viral story on Facebook.

 "Now it’s official: FDA announced that vaccines are causing autism," stated a headline on truthcommand.com.

...

The truthcommand.com website states that it aims "to raise awareness to issues ignored by the media." We contacted the email address listed on the website and did not get a reply. Part way through our reporting the story was no longer accessible on the website.

The misleading story has circulated at least since March 2016 when Snopes debunked it.
Truthcommand.com stated "Now it’s official: FDA announced that vaccines are causing autism."

But the FDA did no such thing. The evidence Truthcommand.com cited is taken out of context, inaccurate or out of date. We rate this claim Pants on Fire.

"Devalued People Caring for Devalued People"

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One is a shortage of caregivers, which is likely to get worse.

At The Philadelphia Inquirer, Ronnie Polaneczky writes of Direct-Support Professionals (DSPs):

By 2020, the U.S. Department of Health and Human Services estimates that the equivalent of 1.2 million full-time DSPs will be needed to care for 1.4 million Americans with developmental disabilities needing residential, vocational and other supports. And the U.S. Bureau of Labor Statistics has projected that "home health care" and "personal care aides" will be two of the three fastest-growing occupations in the country between now and 2024.

The work can be physically demanding and emotionally challenging, and requires extensive skills and ongoing training. But these workers rarely receive benefits like insurance, sick leave, and paid time off.

The state sets the rates that support professionals are paid via the waivers. In Pennsylvania, it equates to an average $11.17 an hour. That's roughly half of what MIT has determined to be a living wage here for a family of two, points out Kathy Brown McHale, CEO of Special People in the Northeast Inc. (SPIN), a local provider of services to people with intellectual disability and autism.

...
And it frustrates Maureen Devaney, mother of an intellectually disabled daughter and cofounder of Vision for Equality, an advocacy group for individuals with disabilities and the loved ones who care about them.

DSPs, she says, "are devalued people caring for devalued people. Their work is hard and they're paid so little. After a while even the most dedicated ones think about leaving."

The Seven Words, Continued

 In The Politics of Autism, I discuss the political aspects of science and public health. Many posts have discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on science and disability issues more generally.

At WP,  Lena H. Sun and Juliet Eilperin report that a ban on certain words and phrases in budget documents extends beyond CDC to other agencies of HHS.

Officials at the Centers for Disease Control and Prevention, which is part of HHS, were given a list of seven prohibited words or phrases during a meeting Thursday with senior CDC officials who oversee the budget. The words to avoid: “vulnerable,” “entitlement,” “diversity,” “transgender,” “fetus,” “evidence-based” and “science-based.”

A second HHS agency received similar guidance to avoid using “entitlement,” “diversity” and “vulnerable,” according to an official who took part in a briefing earlier in the week. Participants at that agency were also told to use “Obamacare” instead of ACA, or the Affordable Care Act, and to use “exchanges” instead of “marketplaces” to describe the venues where people can purchase health insurance.

At a briefing, CDC budget analysts got word that they would replace "evidence-based" and "scient-based" with  “CDC bases its recommendations on science in consideration with community standards and wishes."

At the CDC, the briefing was led by a senior career civil servant in the office that oversees formulation of the agency’s budget. She opened the meeting by telling participants not to use the words “vulnerable,” “entitlement” and “diversity” because documents containing those words were being “flagged” by others higher up the chain in the budget process, and documents were being sent back to CDC for corrections.

The civil servant then announced the additional words — “fetus,” “transgender,” “evidence-based” and “science-based” — that were not to be used. Another senior CDC budget person told the group that agency budget officials conducted a search across the agency’s budget documents and found that “evidence-based” and “science-based” were used so frequently that they were essentially meaningless, the analyst recalled.

...

The CDC analyst said it was clear to participants that they were to avoid those seven words but only in drafting budget documents.

“What would you call it when you’re told not to use those words?” the person said. “If that’s not a ban, maybe I need to improve my vocabulary.”

 From NYT:

A former federal official, who asked not to be named, called the move unprecedented.

“It’s absurd and Orwellian, it’s stupid and Orwellian, but they are not saying to not use the words in reports or articles or scientific publications or anything else the C.D.C. does,” the former official said. “They’re saying not to use it in your request for money because it will hurt you. It’s not about censoring what C.D.C. can say to the American public. It’s about a budget strategy to get funded.”

Even if the ban applies only the budget documents, officials undoubtedly feel pressure to avoid these words and phrases in other documents as well.

Gleb Tsipursky at Scientific American:

Unfortunately, non-specialists—“community members”—are too easily fooled by false but emotionally appealing claims. For instance, the homeopathy industry is a multi-billion dollar business. Homeopathy is based on the false claim of the benefit of super-diluted substances and the principle of “like cures like.” While it has been debunked by hundreds of studies, people still want to believe in magic-like cures. Homeopathy is not harmless, yet despite the fact that it kills people every day, only recently has the federal government taken steps to address this problem. But under the new guidelines, these steps could be rolled back, and the CDC might have to take homeopathy “under consideration.”

For another example, consider the false claim that vaccines cause autism. This belief is spread widely across the US, and leads to many people failing to vaccinate their children against diseases like measles. While measles was practically eliminated in the US by 2000, in recent years outbreaks of measles have been on the rise in the US, driven by parents failing to vaccinate their children in a number of communities. Donald Trump has frequently expressed the false view that vaccines cause autism, and we should be very concerned about this being one of the “community wishes” taken under consideration.

The Seven Words You Can't Say at CDC

In The Politics of Autism, I discuss the political aspects of science and public health. 

Lena H. Sun and Juliet Eilperin at WP:

The Trump administration is prohibiting officials at the nation’s top public health agency from using a list of seven words or phrases — including “fetus” and “transgender” — in any official documents being prepared for next year’s budget.

Policy analysts at the Centers for Disease Control and Prevention in Atlanta were told of the list of forbidden words at a meeting Thursday with senior CDC officials who oversee the budget, according to an analyst who took part in the 90-minute briefing. The forbidden words are “vulnerable,” “entitlement,” “diversity,” “transgender,” “fetus,” “evidence-based” and “science-based.”

In some instances, the analysts were given alternative phrases. Instead of “science-based” or ­“evidence-based,” the suggested phrase is “CDC bases its recommendations on science in consideration with community standards and wishes,” the person said. In other cases, no replacement words were immediately offered.

If the ban extends beyond budget documents, this policy would be a problem for the CDC website.  A small sample of references to evidence-based practices and resources:

From a page on screening and diagnosis:

Research indicates that parents are reliable sources of information about their children’s development. Evidence-based screening tools that incorporate parent reports (e.g., Ages and Stages Questionnaire, the Parents’ Evaluation of Developmental Status, and Child Development Inventories) can facilitate structured communication between parents and providers to discover parent concerns, increase parent and provider observations of the child’s development, and increase parent awareness. Such tools can also be time- and cost-efficient in clinical practice settings.2,3,4

From a publication on early warning signs:

Evidence-based educational and interventional strategies can help children learn and build competency in areas of need.

From a CDC guide to autism websites:

A Parent’s Guide to Evidence-Based Practice and Autism
This manual from the National Autism Center aims to assist parents as they make difficult decisions about how best to help their children with autism spectrum disorders reach their full potential.

...
The National Professional Development Center on Autism Spectrum Disorders
This organization strives to promote optimal development and learning of infants, children, and youth with ASD and provide support to their families through the use of evidence-based practices. They provide resources for educators that are evidence-based.

Racial Disparities and Special Education

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

Christina Samuels at Education Week:

The U.S. Department of Education is proposing a two-year delay of a rule that would require states to take a stricter approach to identifying whether their districts have wide racial or ethnic disparities in special education.

The department is asking for comments on its proposed delay. If there is no change, the rule, which was issued under the Obama administration, is set to go into effect for the 2018-19 school year.

During the two-year delay, the Education Department will consider eliminating the rule entirely.

The Leadership Conference on Civil Rights and many other organizations want to retain the rule:

On behalf of The Leadership Conference on Civil and Human Rights and the 112 undersigned organizations, we write to offer our strong support for the robust enforcement of the Individuals with Disabilities Education Act (IDEA) provisions regarding significant disproportionality in the identification, placement, and discipline of students with disabilities with regard to race and ethnicity.[i] 

... 

As parents, students, and advocates working to eliminate discriminatory practices that undermine equal educational opportunity, we know all too well that students of color are disproportionately misidentified for certain categories of special education, placed in restrictive learning environments at higher rates than their White peers with disabilities (where their outcomes are significantly worse than those of other students), and subjected to punitive discipline practices more often.[ii] We wholeheartedly support the collection of data on significant disproportionality, as it is an essential state obligation as required by the Individuals with Disabilities Education Improvement Act[iii] signed on December 3, 2004, and clarified by the regulations finalized on December 19, 2016.[iv] Moreover, we recognize that these data, once collected, should inform action to address systemic barriers to students’ success.

...

This regulation was a direct response to the February 2013 U.S. Government Accountability Office (GAO) study[vi] showing widespread noncompliance by states with 20 U.S.C. Section 1418(d) of the IDEA requiring states to identify Local Education Agencies (LEAs) with significant disproportionality in areas related to special education: Identification; Restrictive Placement; and Discipline. Most states set thresholds for identifying disproportionate districts so high that no districts ever exceeded them, and, therefore, none were identified. Meanwhile states permitted districts to suspend students of color with disabilities at much higher levels than their White peers. Nationally, for example, in 2011, districts suspended more than one in every four Black students with disabilities, at least once. Rates of disciplinary removal for their disabled White peers were far lower.[vii] The GAO recommended that, “To promote consistency in determining which districts need to provide early intervening services, Education should develop a standard approach for defining significant disproportionality to be used by all states.”

A Skeptical View of DeVos

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

Steven Singer at Common Dreams:

The wealthy Republican mega-donor who bought her position as Secretary of Educationpublished an article in the current issue of Education Week called “Commentary: Tolerating Low Expectations for Students With Disabilities Must End.”

It was almost like she expected us all to forget who she actually is and her own sordid history with these kinds of children.

Up until now, the billionaire heiress and public school saboteur always put the needs of profitizers and privateers ahead of special needs children.

During her confirmation hearing, she refused to say whether she would hold private, parochial and charter schools receiving tax dollars to the same standard as public schools in regard to how they treat special education students. Once on the job, she rescinded 72 federal guidelines that had protected special education students.

Singer also mentions Neurocore, the shady "brain performance" outfit in which DeVos invested and for which she was a board member.