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Sunday, May 28, 2017

"A Trump University for People with Cognitive Struggles"

In The Politics of Autism, I write:
The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.
As previous posts noted, Education Secretary Betsy DeVos has a stake in Neurocore, a "brain training" company. Ulrich Boster writes at The Washington Post:
At the very least, DeVos appears to be dangerously naive about what it takes to help people learn — especially children with special needs.
Brain training companies use the veneer of science to promise effortless fixes. In the case of Neurocore, the firm claims that the intervention is “easy,” just a matter of watching TV in its offices a couple of times a week. Other companies peddle games, promising that some online diversions can boost intellect.
In reality, there are no easy answers.  ABA is expensive and demanding.
Still, scared and anguished parents, hunting for hope, will open their wallets, even if an approach has little scientific support. “A lot of times in autism, families are so desperate for an answer, they literally will take a website as evidence” for a treatment, Tom Frazier, chief science officer for Autism Speaks, told me. “It’s very concerning.”
In his book “Autism’s False Prophets,” pediatrician Paul Offit goes further, pointing out that unproven claims do more than fritter away time and money. They can injure both the healthy and the already sick. “The false alarm about vaccines and autism continues to harm a lot of children,” Offit writes. “Harm from not getting needed vaccines, harm from potentially dangerous treatments to eliminate mercury, and harm from therapies as absurd as testosterone ablation and electric shock.”
I’ll admit that before I stepped into Neurocore, I had little intention of signing up for the company’s treatment. I had read too many articles skeptical of brain training to think that I should pay for its services. But it took talking to experts and a visit to Florida to discover that the firm was also hurtful — a Trump University for people with cognitive struggles. By wrapping weak science in sleek packaging, by promising something that it cannot fully deliver, Neurocore offers false hope to people who need honest help. In this regard, what’s most remarkable is that DeVos, the nation’s foremost pedagogue, is behind it all, promoting a form of education that doesn’t actually seem to educate.

Saturday, May 27, 2017

No Strong Evidence for Supplements

In The Politics of Autism, I write:
The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.
Parents of children with autism often try diet changes or supplements to ease symptoms of the disorder, but a new review concludes there's no solid evidence that any work.
After analyzing 19 clinical trials, researchers found little proof that dietary tactics -- from gluten-free foods to fish oil supplements -- helped children with autism spectrum disorders (ASDs).
Some studies showed positive effects, while others found nothing, the researchers said. Overall, the trials were too small and short-term to draw conclusions one way or the other.
"Even though we don't have clear evidence documenting safety and efficacy, many -- if not most -- families of children with ASDs try different diets and nutritional supplements at some point in time," said senior researcher Zachary Warren.
Parents often feel there is at least no harm in trying, according to Warren, an associate professor of pediatrics, psychiatry and special education at Vanderbilt University in Nashville.
 But, "that's not always a safe assumption," he said.
"For example, some nutritional supplements can actually cause harm in high doses," Warren noted.
He recommended that parents talk to their doctor before changing their child's diet or adding supplements.

From Pediatrics, the abstract:
Nutritional and Dietary Interventions for Autism Spectrum Disorder: A Systematic Review
Nila Sathe, Jeffrey C. Andrews, Melissa L. McPheeters, Zachary E. Warren


CONTEXT: Children with autism spectrum disorder (ASD) frequently use special diets or receive nutritional supplements to treat ASD symptoms.

OBJECTIVES: Our objective was to evaluate the effectiveness and safety of dietary interventions or nutritional supplements in ASD.

DATA SOURCES: Databases, including Medline and PsycINFO.

STUDY SELECTION: Two investigators independently screened studies against predetermined criteria.

DATA EXTRACTION: One investigator extracted data with review by a second investigator. Investigators independently assessed the risk of bias and strength of evidence (SOE) (ie, confidence in the estimate of effects).

RESULTS: Nineteen randomized controlled trials (RCTs), 4 with a low risk of bias, evaluated supplements or variations of the gluten/casein-free diet and other dietary approaches. Populations, interventions, and outcomes varied. Ω-3 supplementation did not affect challenging behaviors and was associated with minimal harms (low SOE). Two RCTs of different digestive enzymes reported mixed effects on symptom severity (insufficient SOE). Studies of other supplements (methyl B12, levocarnitine) reported some improvements in symptom severity (insufficient SOE). Studies evaluating gluten/casein-free diets reported some parent-rated improvements in communication and challenging behaviors; however, data were inadequate to make conclusions about the body of evidence (insufficient SOE). Studies of gluten- or casein-containing challenge foods reported no effects on behavior or gastrointestinal symptoms with challenge foods (insufficient SOE); 1 RCT reported no effects of camel’s milk on ASD severity (insufficient SOE). Harms were disparate.

LIMITATIONS: Studies were small and short-term, and there were few fully categorized populations or concomitant interventions.

CONCLUSIONS: There is little evidence to support the use of nutritional supplements or dietary therapies for children with ASD.

Friday, May 26, 2017

Praising the Alabama Mandate

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

At The Gadsden Messenger, State Representative Craig Ford praises the Alabama Legislature for passing an autism insurance mandate.
According to the national Center for Disease Control, one out of every 175 children in Alabama has been diagnosed with some degree of Autism Spectrum Disorder. While treatment is most effective for children between ages two and nine, and coverage for children in this age range was already mandated by law, some children need further treatment going into their teenage years.
But the costs for Applied Behavioral Therapy treatment can be as high as $70,000 a year! So the legislature passed a new law that requires insurance companies to include in their group plans (defined as plans with 51 or more people participating) coverage for the treatment of children up to age 17.
This bill, which Gov. Kay Ivey has now signed into law, will improve the lives of thousands of children and their families. But it also shows what can be done when legislators work together.
Rep. Jim Patterson, R-Meridianville, worked tirelessly on this bill, and he didn’t make it a partisan issue. Rep. Patterson talked with Democrats and Republicans in both chambers of the legislature to come to a compromise that would limit the costs to insurers while still guaranteeing the coverage for our children.
As a result, this bill was passed out of the House with 102 votes in favor and not a single vote against it. In the state Senate, only one senator voted against it.
Another bipartisan success was our education budget. Budget chairman Bill Poole, R-Tuscaloosa, has always worked hard and listened to members of both parties when crafting the education budget. His tireless work has also led to unanimous support in the House for his budgets. And even more impressive is that he’s passed the education budget with unanimous support for three years in a row!
Both of these men have shown what can be accomplished when leaders reach across the aisle and work together instead of turning everything into a partisan issue.

Thursday, May 25, 2017

Trump Budget v. People with Disabilities

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

At The New York Times, Kathleen O'Brien writes:
President Trump’s budget is here, and it contains serious cuts to the social safety net. One of the big changes is a plan to slash more than $800 billion over the next 10 years from Medicaid.
You may think of Medicaid as a program for the poor, but it also helps a variety of other vulnerable populations. Children with special health care needs rely on the program for services not typically covered by private health insurance, which helps them stay at home with their families. There are about five million children with special health care needs who receive benefits through public health insurance programs, including Medicaid. Proposed limits on a per-person basis are expected to disproportionately affect these children and their families, limiting access to costly but necessary services.
My sweet son is in this category.
At AASA, Sasha Pudelski reports:
Medicaid permits payments to districts for certain medically necessary services made available to children under IDEA through an individualized education program (IEP) or Individualized Family Service Program (IFSP). Given Congress’s failure to commit federal resources to fully-funding IDEAix, Medicaid reimbursement serves as a critical funding stream to ensure districts can provide the specialized instructional supports that students with disabilities need to be educated with their peers. The National Alliance for Medicaid in Education estimates that 1 percent of all Medicaid reimbursement goes to local school districts (between $4-5 billion), which is roughly a quarter of the investment made in IDEA ($17 billion).
AASA asked school leaders to identify how their systems would be impacted by a 30 percent reduction in Medicaid funding. By far, the most common result is that students
with disabilities will be harmed.
Another way special education programs and students may be effected by a Medicaid cut is that without this funding stream, districts be at may risk for noncompliance with IDEA. School leaders note that compliance with one of IDEA’s central tenets, educating students in the least restrictive environment, would be substantially jeopardized by a funding cut. The ability of districts to supplement this funding stream with another federal funding stream—Medicaid—has made the difference in being able to provide
many services for students with disabilities and fully adhere to the requirements in IDEA. As this funding stream disappears at a time when IDEA funds comprise merely 16 percent of the additional cost of educating students with disabilities,xi district leaders are concerned they will be unable to meet critical IDEA mandates. Specifically, they   worry about how to guarantee a student is educated in the least restrictive environment and how to ensure students can access the professionals and supports they need to
achieve.

Wednesday, May 24, 2017

Trump Budget Cuts

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts 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.  That record just got worse.

From the Arc:
Today the Trump Administration released its first ten year budget proposal, and the numbers are devastating for people with intellectual and developmental disabilities (I/DD) and their families. On top of the more than $800 billion in Medicaid cuts already approved by the House of Representatives, the Trump Administration is planning for $610 billion in cuts to Medicaid; $72.4 billion in cuts to Social Security’s disability programs; and hundreds of billions more in cuts to other effective federal programs that are vital to people with I/DD.
“Where we invest our federal dollars is a measure of our values as a nation. Today the Trump Administration showed its cards, and coupled with the devastating Medicaid cuts already approved by the House of Representatives in the health care bill, the deck is stacked against people with disabilities.
...
“This budget – this Trump card – along with the health care cards being played in Congress as we speak, will dismantle decades of progress for people with disabilities and their families. So I’m calling on all advocates to do what they have done for decades, band together to put a face on these cuts. Share your story in your community and with your elected officials, and tell them to reject these cuts, before we go back in time to an era of discrimination and isolation,” said Peter Berns, CEO, The Arc.
In tandem with this budget news, The Arc is releasing a video which shares the story of a Maryland family which risks losing access to critical care for one of their children due to impending cuts to federal Medicaid funding. ...
From ASAN:
ASAN strongly condemns the deep cuts that the President’s proposed budget would make to Medicaid, Social Security, and other critical programs for people with disabilities. The President’s proposal would deprive countless Americans with disabilities of critical health care and community-based supports. It would jeopardize our very lives and result in a massive return to nursing homes and institutions. ASAN calls on Congress to reject these devastating cuts and craft a budget that invests in people with disabilities, our families, and our communities. We have come too far to go back.
The President’s budget would require massive cuts to Medicaid, which acts as a lifeline for countless people with disabilities. Medicaid is not only a critical source of health care coverage but also the main funder for home and community-based services and supports that help us live in the community instead of institutions. But the President’s budget takes the $800 billion in Medicare cuts proposed by the American Health Care Act and adds an extra $610 billion in additional cuts. This will reduce Medicaid funding by more than a trillion dollars over the next 10 years – a change that would cut the program in half.

This budget would eliminate $47 million for research on health care and services for autistic people and our families that was provided via the Autism CARES Act. These services include the Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) and Developmental Behavioral Pediatrics (DBP) programs which train healthcare professionals to work with autistic people. These cuts are in addition to $5.8 billion in cuts to the National Institutes of Health and $35 million in cuts to CDC work related to autism and developmental disability.
The budget would also cut Social Security at the same time that it cuts programs that help us find jobs in the community. It promises $50 billion in cuts to Social Security Disability. The only way to achieve such stark cuts is to kick people with disabilities off the program, through punitive and impossible-to-meet work requirements or other harsh changes which will result in people losing their Social Security. While ASAN has always supported programs to help people with disabilities find employment, these cuts aren’t designed to move people to quality jobs that help them escape poverty. In fact, the budget would also cut all Vocational Rehabilitation funding for state supported employment grants, which are instrumental in helping people with intellectual and developmental disabilities get and keep real jobs in the community.
Furthermore, it would punish SSI recipients for living together – including couples and families – by reducing their SSI payments. SSI programs already force people with disabilities to survive on an average of just $18 per day. Further cuts would force SSI recipients to choose between separation and starvation. To make it worse, the President’s budget would also make massive cuts to programs that are critical to people with disabilities living in poverty, including a $193 billion cut to the Supplemental Nutritional Assistance Program (SNAP), or food stamps program, over the next ten years; completely eliminating the Low Income Home Energy Assistance Program (LIHEAP) that helps low-income people pay their heating bills; and a $72 million cut to substance abuse prevention programs.
In addition to cuts to our health care and community-based services, our community would see a $25 million cut to programs to build affordable community-based housing for people with disabilities and a $7.7 billion cut to affordable housing programs overall. These cuts could cause over 250,000 people to lose the housing vouchers. The budget would eliminate the National Housing Trust Fund, which helps people with extremely low incomes escape or avoid homelessness. For thousands of people with disabilities who are already struggling to make ends meet, these cuts will mean homelessness or imprisonment in an institution.
Finally, this budget would cut smaller but vital programs that increase inclusion and independence for people with disabilities and our families. This budget would cut all federal funding for the Special Olympics, would eliminate programs that provide free legal assistance to people with low incomes, and would sharply reduce funding for State Councils on Developmental Disabilities, the National Institute on Disability, Independent Living, and Rehabilitation Research, and the Substance Abuse and Mental Health Services Administration. People with disabilities’ lives have value and are worth investing in. We deserve more than this.
When Congress threatened to cut Medicaid by over $800 billion, we showed up to fight. Congress heard from the disability community in town halls, and through countless phone calls, faxes, and letters. That fight isn’t over–but we can win, and we can beat these cuts too. We call on Congress to reject the President’s attack on the supports we need to live in the community. Our lives are too important to be put on the chopping block.

Tuesday, May 23, 2017

ABLE 2.0

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

Autism dad Eli Lehrer writes at The Hill:
Many families (mine included) have put money into conventional 529 college savings plans and would now like to move it into the more flexible ABLE Accounts. Under current law, that’s not possible without paying massive tax penalties. Moreover, while one of the law's goals was to help the disabled take jobs and lead more typical lives, the law doesn't raise limits to allow beneficiaries to deposit their own earnings into the accounts. Finally, people who develop severe disabilities later in life from accidents, adult-onset mental illness or conditions like Lou Gehrig’s disease can’t benefit from the ABLE Act at all.
A bipartisan legislative package—styled "ABLE 2.0" and spearheaded by House Republican Conference Chair Cathy McMorris-Rodgers (R-Wash.)—would address each of these flaws. It would allow rollovers of 529 plan balances into ABLE accounts; raise the limits for working disabled people with ABLE accounts to deposit more of their own earnings; and increase the eligible age to open an ABLE account to 45. It’s a package of commonsense measures that will make it easier for special-needs families to save for their children and for special-needs adults to have the resources they need to live better and more independent lives.

Monday, May 22, 2017

Autism: Disorder or Disability?

In The Politics of Autism, I write about pushback against the disease frame:
Another signal was a 2013 public apology by Easter Seals after it sent out a mass email using the disease frame:  “On Tuesday, we sent you an email about autism and we owe you an apology. We called autism an epidemic and some of you called us out on our language. You're right. Autism is not an epidemic. Autism is not a public health crisis.”  In the same vein, Los Angeles Times journalist Michael Hiltzik walked back from language that he used in a 2014 story.   “I have been taken to task, properly, for referring to autism above as `a terrible condition for its sufferers and their families.’ That's a narrow and ill-informed way of looking at a condition that many people on the autism spectrum feel has benefited their lives.” 

Simon Baron-Cohen weighs in at The Journal of Child Psychology and Psychiatry.  The abstract:
Should we continue to refer to autism as a ‘disease’ or ‘disorder’, or is the framework of ‘neurodiversity’ a more humane and accurate lens through which to view people with autism? Evidence at the genetic, neural, behavioural and cognitive levels reveals people with autism show both differences, and signs of disability, but not disorder. Disability requires societal support, acceptance of difference and diversity, and societal “reasonable adjustment”, whilst disorder is usually taken to require cure or treatment. These are very different frameworks. It will be important to see how the concept of neurodiversity is applied to the 300 diagnoses in DSM-5, and if it revolutionizes both the science and the practice of psychiatry.