Developmental Disability Services for Adults

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

At Drexel University, Frank Otto reports:

A quarter of adults with autism who use developmental disability services are not working or participating in other structured activities during the day, with only 14 percent holding a paying job in the community, according to the A.J. Drexel Autism Institute. 

Since 2015, the Institute has produced a National Autism Indicators Report. The past two reports showed that adults with autism have difficulty transitioning into jobs. This year’s version, “National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood,” delved into the lives and needs of adults with autism who use developmental disability services — an estimated 111,000 nationwide.

“Billions are spent each year on services for people on the autism spectrum,” said Paul Shattuck, PhD, associate professor in Drexel’s Dornsife School of Public Health and director of the Autism Institute’s Life Course Outcomes program, which produces the annual reports. “Relatively little is spent trying to understand the types and amount of services people need, as well as the services they actually end up getting or the outcomes of them. This latest National Autism Indicators Report continues our tradition of publishing dashboard-like statistics about how life is turning out across the course of these people’s lives.” [emphasis added]

For the third year of the report, Anne Roux, a research scientist on Shattuck’s team, led a group that looked at data from 3,500 adults who used developmental disability services and took the 2014-15 National Core Indicators Adult Consumer Survey. This is a survey used by some states to monitor the effectiveness of their services.

In addition to the distressing information on lack of work and activities for most recipients the research team found that 25 percent did not believe they were getting the full services they needed.

“This dovetails with our team’s earlier reports on the ‘services cliff’ that transition-age youth encounter when they leave special education but have difficulty accessing services they may need to become employed, continue their education, or live more independently,” Roux said.

 

Autism and the Portland Attack

In The Politics of Autism, I write:

People with disabilities are victims of violent crime three times as often as people without disabilities. The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. 

Michael Edison Hayden reports at ABC:

Micah Fletcher, the survivor of a Portland, Oregon, stabbing attack that allegedly involved hate speech and left two people dead, issued a statement honoring the two who died and offering support to the city's Muslims.

"I want the Muslim community to know that they have a home here in Portland and are loved," Fletcher said in the statement. "I want to honor the families who lost their brave fathers, sons, and brothers and I want the media and the country to honor those families. I want to send my condolences and honor those families."

The 21-year-old Fletcher is a poet who won a 2013 poetry competition with a poem that condemned the mistreatment of Muslims, according to The Oregonian newspaper.

He was taking a light-rail train from Portland State University where he is a student to his job at a pizza shop at the time of the attack Friday, the paper reported.

Fletcher was slashed in the throat but survived, the paper reported.

Fletcher is autistic.  At Forbes, Emily Willingham writes:

Autistic people have often been accused of lacking empathy. It's an easily disproved canard that autistic advocates have long and repeatedly explained. As with many things having to do with autism, non-autistic people mistake non-neurotypical responses to emotional situations as evidence that autistic people lack emotions or don't sense or identify with the emotions of others. Those who like to rely on convenient narratives connecting what seems to be obvious instead of digging deeper--or, you know, asking autistic people--propagate the false impression that autistic people lack empathy. They don't.

Exceptional Minds: Past and Future

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience. 

Keith Sharon reports at The Orange County Register:

In 2009, a group of about 10 parents in Sherman Oaks raised $250,000, bought nine computers, hired four teachers and started an animation/vocational school for their autistic children.

The original idea was to create a training program for autistic students after high school, since many couldn’t function in typical college settings. People on the autism spectrum often have difficulties with communication, problem-solving, recognizing social cues and time management – all challenges for college and workplace settings.

There were nine students, but the program, called “Exceptional Minds,” had no director.

The parents arranged a meeting with Ernie Merlan, a long-time animator, muralist and imagineer who had worked on Hollywood movies and Disneyland attractions such as the Indiana Jones Adventure and Toontown. They told him they wanted to rent space at Merlan Creative for their new school.

That story was a lie. They didn’t want office space, they wanted him.

...

Exceptional Minds now has 32 full-time students – local ones from areas such as Venice, Chino Hills and Grand Terrace, and several from out of state (an incoming student is from Alaska) – and 50 part-timers. It has deals with HBO, Sony, Fox and other studios.
“Hollywood isn’t altruistic,” Merlan said. “They’re going to try us out once. We had better be good.”

So far, it has been very good.

“(Hollywood) keeps coming back for more,” Merlan said.

Here’s the best thing about this program: Other businesses are starting to be inspired.
There’s an adult school in Glendale called “Uniquely Abled Academy,” and one in Santa Monica called “MindSpark.” Both work with autistic adults, and both were inspired by Exceptional Minds.

Merlan said Exceptional Minds has a formula that can be easily followed.

“We’re assuming all of our students are superheroes,” Merlan said. “They live in an alternative universe, and that’s what we’re creating. The key is to build on what they’re interested in.”

Portable IEPs for Military Families

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

At RealClearEducation, Mark K. Claypool and John M. McLaughlin propose reallocating federal education money to special education.

[Use] a portion to create a portable Individualized Education Program (IEP) program for children with special needs within the United States military. If a child has autism and the IEP calls for applied behavior analysis and speech/language services at Fort Bragg, North Carolina, the child should have the same disability and IEP-specified programming at Fort Campbell, Kentucky or Fort Hood, Texas.

Furthermore, the additional money could be used to upgrade special education programs on military installments and those in adjacent public school districts to state-of-the-art. Fortunately, some military-based and adjacent schools are already exemplary, but too many are not. Tie this program enhancement funding to existing impact-aid formulas. Superior special education programs available to military families will have a positive impact on morale, recruitment, retention and, most importantly, on the students’ lives. In addition, having model special education programs in adjacent public school districts is a huge chamber of commerce win. Families move to school districts offering their child with special needs the best opportunity. What school superintendent wouldn’t love to have families move to the district for the quality of its special education program?

"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.

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.

Amy Norton reports at HealthDay:

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.

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.

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.

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.

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.

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.

Measles, Antivax, and Prejudice

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  One consequence has been a measles outbreak within Minnesota's Somali community.

Saad Omer writes at STAT:

My colleagues and I assessed the risk of large measles outbreaks in the US. In a paper published in the American Journal of Epidemiology, we reported that approximately 12.5 percent of US children and adolescents are susceptible to measles. Moreover, we found that even a modest drop in the vaccination rate could result in the breach of the “herd immunity threshold” — that could result in breakdown of community level protection against measles.

When such outbreaks happen, it is often minority groups that get blamed for bringing disease into the country. For example during the so-called Disneyland outbreak of 2014-2015, multiple politicians expressed unfounded concerns about illegal immigrants bringing measles into the US. Then there is the not so proud history of blaming infectious disease importation and spread on ethnic and sexual minorities.

It is in this context that many of us in public health, who also believe in civil and human rights, worry about the Minnesota Somali-American community being blamed for something bigger than the current outbreak — even though the community itself has been a victim of an onslaught of propaganda and misinformation disguised as empathy.

Alabama Governor Signs Autism Insurance Mandate

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

Andrew J. Yawn reports at The Montgomery Advertiser:

Gov. Kay Ivey signed the autism insurance bill into law Friday at the Capitol, and afterward she was embraced by a few of the thousands of children the law will support.

Despite a late session effort to stymie the autism bill, it unanimously pushed through the House about 2 a.m. Thursday. Some concessions were made including an age cap and an exemption for business employing 50 people or fewer, but the law will make access to care easier for children on the spectrum whose applied behavior analysis (ABA) therapy will be covered by health insurance until the age of 18.

"The bill is real important," Ivey said. "This bill is about the quality of life of wonderful children, and I'm proud to sign this bill."

State Finance Director Clinton Carter's daughter Libby, 5, was one of the children on the spectrum to embrace Ivey after the signing.

Restraint and Seclusion: Statistics and Law

In The Politics of Autism, I discuss the use of restraint and seclusion.  I also note the uncertainty of many of the statistics that the issue involves.

Christina A. Samuels reports at Education Week:

One out of every 100 special education students was restrained by school personnel or secluded in school from his or her peers in the 2013-14 school year, presumably to quell behavior that teachers considered disruptive or dangerous.

That means nearly 70,000 special education students were restrained or secluded in that school year, the most recent for which data are available. For most students, this happened more than once: States reported more than 200,000 such incidents, so on average, a special education student was restrained or secluded about three times.

These statistics, based on an analysis by the Education Week Research Center of data collected by the U.S. Department of Education's office for civil rights, represent the best national snapshot of these controversial practices.

The numbers are also, almost surely, dramatically understated.

...
[Michigan] Lt. Gov. Brian Calley, a Republican, led a commission that was asked to recommend reforms to the state's special education program. For that work, he traveled around the state to hear parents' concerns about restraint and seclusion.

"It's really unbelievable, some of the things I've heard," said Calley, who has a daughter with autism spectrum disorder. "The anecdotal evidence was just piling up that it was much more common than anyone cared to admit.

Lanette Suarez writes at The University of Miami Law Review:

Students with disabilities, especially students of color with disabilities, are disproportionately subjected to restraints and seclusion, impeding their access to an inclusive education. Further, “[s]tudents with disabilities make up 19 percent of those who receive corporal punishment, yet just 14 percent of the nationwide student population.” According to the Department of Education Office for Civil Rights, students with disabilities are 12% of the student population, but 58% of those subjected to seclusion or involuntary confinement.Further, even though they constitute only 12% of
the student population across the United States, students with disabilities represent 75% of those who are subjected to physical restraints at school to immobilize them or reduce their ability to move freely.

Similarly, disabled African-American students represent 19% of students with  isabilities, but 36% of the students who are restrained at school by mechanical restraints or equipment designed to restrict freedom of movement. These numbers show the significantly disparate use of excessive force, restraints, and punishment skewed toward
disabled children and disabled children of color in particular.

Significantly, these numbers may be inaccurate because of a fundamental problem: lack of reporting. In 2012, there were 163,000 instances where students were restrained (physically held down) according to federal data. Also, in 2012, students were placed
roughly 104,000 times in scream rooms and there were 7,600 reports of students being placed in mechanical restraints like handcuffs or straps. However, there is reason to believe even more cases exist especially for children with autism or those experiencing emotional and behavioral issues. These students are either too young, distressed, or too limited in their ability to communicate what goes on in school. Children with disabilities are especially vulnerable because they often have a history of behavioral problems, which may undermine their credibility when reporting abuse. In other situations, the child’s increased agitation can cause a “more forceful and longer application of restraint until the child succumbs and sometimes stops breathing.”Furthermore, many school systems fail to report all incidents to the federal government: “Fewer than one-third of the nation’s school districts reported using restraints or seclusions even once during the school year.” Thus, the number of students with disabilities that are subjected to restraints and seclusion as punishment could be significantly higher. Reporting the incidents could be a way to have the essential information to ascertain the problems and attempt to find a meaningful solution.

Final Passage of Alabama Mandate

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

Brian Lyman reports at The Montgomery Advertiser:

The Alabama House of Representatives voted 103 to 0 early Thursday morning for a an amended version of legislation that would require insurers to provide the therapies for children 18 and younger. The final version was somewhat less than what supporters initially sought, and includes an exemption from the mandate for businesses that employ 50 people or less.

But Rep. Jim Patterson, R-Merdianville, the bill's sponsor, said after the 2:08 a.m. vote Thursday that it was an important first step in allowing families with autistic children access to critical treatment.

"It's hard to be against children who need help," he said. "103 votes, that's pretty strong."

The bill goes to Gov. Kay Ivey.

At oanow.com, Cynthia Williford reports that the legislation could help keep behavior analysts in the state:

For years, John Rapp, Auburn University’s applied behavior analysis program director, has seen students who get their masters leave Alabama for better, higher-paying or simply available, jobs. And those jobs are often in the 45 other states where insurance reform bills have passed.

“We like to try to recruit people outside Alabama to come to our program with the hope that they’ll stay, but, without gainful employment, they will gravitate to wherever the jobs are,” Rapp said, the director of one of the highest rated programs in the country. “Suffice it to say that Alabama has not been one of the higher paying regions. That has contributed to it, and again, where there’s a lot of demand, there’s an opportunity to pay better salaries.”

Odessa Luna, a board certified behavior analyst (BCBA) and doctoral candidate at Auburn, said she has trained and knows several who have found better jobs elsewhere. If the bill were to pass, Luna said it would be a “huge appeal” to BCBAs.

Alabama Senate Passes Autism Insurance Mandate

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

At The Alabama Media Group, Mike Cason reports that the Alabama Senate has passed an autism insurance mandate.

The Senate passed the bill by a vote of 33-1. That sends it back to the House, which had passed it 100-0 earlier.

If the House accepts changes made by the Senate, it could send the bill to Gov. Kay Ivey.
Rep. Jim Patterson, R-Meridianville, the sponsor of the bill, said he will ask the House to accept the Senate changes. Patterson said he expects that to happen on Wednesday.

Key Senate changes include making the mandate apply only to companies with at least 51 employees, making the mandate apply only to services for patients up to age 18 and delaying the mandate on public insurance plans until Dec. 31, 2018.

Patterson said he was disappointed in the delay for those plans but said overall the bill was a "victory." He said the advocacy group Autism Speaks, which has lobbied for the bill, urged him to accept the Senate changes.

Parents and advocates say applied behavior analysis can be a life-changing therapy for children with autism. But it's expensive and can be out of reach for parents if not covered by insurance.

Sen. Cam Ward, R-Alabaster, said the insurance mandate would mean that more families would be able to receive the therapy, which benefited his daughter, Riley.

A Fox Apology

In The Politics of Autism, I discuss depictions of ASD in popular culture.   

Fox News has had a lot to apologize for lately.  The latest, as Brad Reed reports at Raw Story:

Fox News contributor Tammy Bruce on Tuesday issued a formal apology for mocking an 8-year-old autistic child by calling him a “snowflake.”

“I am so sorry to the family,” Bruce began. “My intention was never to hurt a kid and his mom. We had absolutely no idea Michael was on the autism spectrum, and as a gay woman and feminist, I’ve spent most of my adult life working to improve the lives of woman and children, and those who are disenfranchised.”

Bruce also pledged in the future to stop attacking children for political purposes, regardless of whether or not they have autism.

Bruce first criticized the autistic boy after he approached Vice President Mike Pence and demanded an apology after Pence accidentally hit him in the face. At the time, Bruce mocked the boy because video seemed to show that Pence had barely made physical contact with him while he was attending an event at the White House.

“I guess we’re giving birth to snowflakes now, because that looked like that kid needed a safe space in that room,” she said during a segment with Fox host Bill Hemmer. “It is a bit, the eight year-old pretty much stalked the vice president afterwards. He wasn’t even — the headlines said he was ‘hit, he was struck, he was smashed, he was bumped.’ The fabric on his sleeve touched his nose maybe. He stalks the vice president, says, ‘you owe me an apology.'”

Snake Oil

In The Politics of Autism, I discuss autism quackery. 

 David Robert Grimes, an Oxford physicist, writes at The Irish Times:

For as long as people have fallen ill, there are those who hawk dubious elixirs bereft of efficacy. In the late 1800s, Clark Stanley amassed a fortune with such an ointment, allegedly drained from the skin of rattlesnakes – which, in reality, consisted primarily of mineral oil.

Since then, “snake-oil” has become a catch-all term for ostensibly medical but utterly ineffectual concoctions. Yet even now snake-oil treatments remain resolutely popular, ranging from the merely useless to the actively harmful. The single contemptible trait uniting these diverse cure-alls is that they are inevitably pushed most aggressively upon the desperate and vulnerable, such as those diagnosed with incurable diseases, chronic conditions or terminal illness.

Children with developmental disorders are frequently targeted with unorthodox wares. In particular, families of autistic children are mercilessly pursued by purveyors of snake-oil, with potentially deadly results.

Miracle Mineral Solution is but one example of this. The innocuously named MMS is a product created by Jim Humble, a one-time Scientologist who more recently styles himself as archbishop of the Genesis II Church of Health & Healing.

Mandate Bill Advances in Alabama

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

Ben Bullard reports at The Cullman Times:

The Alabama Senate will vote this week on a mandate for insurers to offer coverage for intensive applied behavioral analysis (ABA) therapy, Senate President Pro Tem Del Marsh (R-Anniston) has pledged.

“We will have all day Wednesday to have debate on that bill,” Marsh said last week. “Our intent is to get an autism bill to the governor.”

The bill would require some insurers to cover ABA therapy, an intensive treatment that can cost $100 per hour — out of financial reach for many families. Business and insurance groups have voiced opposition to the proposed mandate, citing cost concerns.

...
Hostilities erupted among senators last Wednesday, shortly after the Senate budget committee approved the bill on a 14-2 vote. Committee Chairman Sen. Trip Pittman (R-Montrose) — who says he’s worried about costs to Medicaid and other state insurance programs — said afterward that he might hold the bill in committee by not reporting it to the floor in order to negotiate for changes.

After pushback from other lawmakers, he relented, but criticized the idea of mandating new, yet-to-be-tallied expenses.

“At the end of the day, we have to be able to pay for the costs of this, and there are a lot of unknown costs,” he said.

Antivax Activists, Somali Minnesotans and Measles

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

Helen Branswell reports at STAT:

As of Monday, there were 48 confirmed cases of the highly contagious — and potentially deadly — infection, all but two in children under the age of 10. Of the sick, 45 had not been vaccinated against measles. And 41 of the patients are Somali Minnesotans.

[Fatuma] Ishtar, a community outreach worker in Minneapolis, blames the anti-vaccination lobby. “They are everywhere. Like, every event, every forum,” she said. “They continue to push the community. I feel offended by this group.”

Michael Osterholm, former state epidemiologist, goes further. Actually, he uses the verb “exploit.”

“What they say is, ‘Remember, measles is just a five-to-seven-day disease. Autism is forever,'” he said. Osterholm, however, knows the dangers of measles. He was the state epidemiologist in 1990, when Minnesota had a large measles outbreak — 460 cases in Minneapolis and St. Paul.

Three children died.

Christopher Mele reports at The New York Times:

Mohamud Noor, executive director of the Confederation of Somali Community in Minnesota, said anti-vaccine activists had met one-on-one with families and had been more aggressive than public health educators in getting their message out.

Though the medical research has debunked the connection of vaccines to autism, the notion is deeply rooted in the community, Mr. Noor said on Friday, adding that the “main fight” was combating that perception.

The Washington Post reported Friday that the fear was so entrenched that parents in the community believe the risk of measles is preferable. The Post reported that one of the anti-vaccine movement’s founders, Andrew Wakefield, was among those who had met with the parents. Asked if he felt at fault for the outbreak, he replied: “I don’t feel responsible at all,” according to The Post.

In 2014, the United States had a record number of measles cases — 667 — since the disease was thought to have been eliminated in 2000. Nearly 400 of them occurred in unvaccinated Amish communities in Ohio.

"Ask an Autistic Person"

In The Politics of Autism, I write:

Arguing that autistic people themselves are the main stakeholders, groups such as ASAN have called for increasing this representation.[on IACC] They also argue that too much autism research spending goes to the “disease frame” and that no enough goes into improvement of services and the quality of life. In 2010, for instance, only 16 percent went to services and only 2 percent went to “lifespan issues” (e.g., the needs of adults on the spectrum).

John Elder Robison writes at STAT:

There’s a widespread view that autistic people need to “get scientists to listen to us,” and that “scientists need to stop ignoring autistic people.” That hasn’t been my experience at all. I first got involved with autism science when researchers from Harvard and the University of Washington tracked me down following the release of my first book and asked for my perspective on proposed work. Since then, autism scientists have welcomed me into their groups, answered my questions, sought my advice and paid attention to it.

Ten years ago, the director of the National Institutes of Mental Health invited me to serve our government in a similar capacity. With his support, and the encouragement of others in government, I have been proud to do that. Since then, I’ve been joined in this work by other autistic people. We’ve discussed hundreds of proposed research studies, and it has been gratifying to see some of them funded, with our ideas and suggestions integrated into research.

A larger movement now aims to recruit more so-called autistic advisers, and to encourage every researcher to seek input from autistic people when structuring studies. “Ask an autistic person,” has become a common refrain in the autism science community.

Autism and Health

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

A release from Autism Speaks:

Autism Speaks today issued the first in a series of annual, in-depth reports on special topics in autism. Autism and Health: Advances in Understanding and Treating the Health Conditions that Frequently Accompany Autism gathers into one comprehensive report the most authoritative research and the latest guidelines on treatment and support of children and adults with autism spectrum disorder.

The last decade has brought tremendous advances in understanding and addressing the many physical and mental health conditions that often go hand-in-hand with autism. Those conditions include epilepsy, gastrointestinal distress (GI), sleep disturbances, eating and feeding challenges, attention deficit and hyperactivity disorder (ADHD), anxiety, depression, schizophrenia and bipolar disorder. These issues can extend across the life span.

While each new piece of high-quality research adds to our understanding of autism, it also adds to the complexity of developing the best practices to address the diverse needs of the autism community.

Health problems attributed to autism may instead be symptoms of a different condition - one that is treatable. For example:

• Children with autism are almost 8 times more likely than typical kids to have chronic GI distress. The report includes expert guidance on when to seek help for "picky eating," which could be a sign of GI problems.

• More than half of people with autism have sleep disturbances, which may contribute to daytime behavioral problems. A model parent-education program teaches autism-specific sleep guidelines.

• 30 to 60 percent of people with autism have symptoms of ADHD. Research shows that personalized treatment with cognitive-behavioral techniques adapted for autism may help.

The special report's Facts and Figures Supplement provides data on prevalence, screening and diagnosis, the cost of services and treatment, adult needs, and funding for research, among other categories.

"We now know more about autism than ever before, but each new piece of research paints an even more complex picture of the disorder," said Thomas Frazier, PhD, Autism Speaks chief science officer. "For the first time, our report pulls together the most up-to-date research on autism, and presents it in easy-to-understand terms. We hope people with autism, parents, communities, and health care providers will use this information to make the best possible decisions for their particular needs and to enhance the quality of life, now and in the future."

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Autism and Health: Advances in Understanding and Treating the Health Conditions that Frequently Accompany Autism is available at http://www.autismspeaks.org/specialreport.