Proposed Rule Could Hurt Mean Less Treatment for Autistic People

The Politics of Autism includes an extensive discussion of insurance issues, including the impact of the Affordable Care Act.

 Paige Winfield Cunningham at The Washington Post:

Let’s just say that if we were waiting for the other shoe to drop, it may just have done so. A humongous, 365-page rule proposed late last week by the Centers for Medicare and Medicaid Services is the agency’s biggest attempt to put a conservative stamp on the Affordable Care Act by rewriting its rules in a way that gives insurers and states as much leeway as possible from the law’s mandates.

The proposed rule, which suggests an array of changes to how the individual and small-business marketplaces are run, most notably gives states wide latitude in carrying out the ACA’s “essential health benefits” — 10 categories of care that individual market insurers must cover to ensure consumers can access a full range of benefits.
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Here’s how EHBs work: States must select a “benchmark” plan to set the standard for how generously insurers must cover essential benefits, which include categories such as maternity care and mental-health services. The benchmark plan is typically chosen from among employer-sponsored plans in order to ensure individual plans are comparably generous.

Marketplace insurers must provide the same value of services within each of the 10 categories as the benchmark plan. So if the benchmark plans covers treatment for autism or speech-language therapy, for example, insurers must cover that too, or substitute a service with equivalent value. You get the idea.

If CMS goes ahead with its proposed changes, states won’t have to choose from a limited, fixed menu of benchmark plans. Instead, they can select a la carte. For example, Ohio could choose the maternity care standards from one benchmark plan and the mental-health services from another. Wisconsin could choose the benchmark plan from North Dakota or New Jersey or Virginia.

Nicholas Bagley has more at The Incidental Economist. 

Milestone Tracker App

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

A release from the Centers for Disease Control and Prevention:

Is your child’s development on track for his or her age? Now you can find out with CDC’s new free Milestone Tracker app. The app makes it easy for parents to track, support, and celebrate their young child’s development.

“Skills like taking a first step, saying those first words, and waving ‘bye-bye’ are developmental milestones all parents anticipate and celebrate,” said CDC Director Brenda Fitzgerald, M.D. “This CDC Milestone Tracker app gives parents tips to help their child learn and grow, a way to track developmental milestones, recognize delays, and the ability to share this information with their healthcare provider.”
The new app offers

• Milestone checklists for children ages 2 months through 5 years, illustrated with photos and videos.
• Tips and activities to help children learn and grow.
• Information on when to act early and talk with a doctor about a developmental concern.
• A personalized milestone summary that can be easily shared with the doctor and other care providers.
• Reminders for appointments and developmental screening.

The Milestone Tracker app, available in iOS and Android, was developed by CDC’s “Learn the Signs. Act Early.” program to help parents, early care and education providers, and healthcare providers track developmental milestones in young children.

Through this app and its many other parent-friendly tools, the program aims to improve the early identification of children with developmental delays and disabilities, including autism, so children and families can get the support and services they need as early as possible.

In addition to the app, CDC offers free children’s books, milestone checklists, and other resources that can be downloaded or ordered online. Most materials are available in English and Spanish, and some are available in other languages. For more information on the Milestones Tracker app, visit www.cdc.gov/MilestoneTracker. For more on CDC’s “Learn the Signs. Act Early.” program and other free tools for parents, visit www.cdc.gov/ActEarly.

Overwatch, Symmetra, and Autism

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

Yesterday, I was not able to attend the Autism Law Summit because of a longstanding promise to take my son to Stan Lee's L.A. Comic Con.  We attended a panel on Overwatch, and one of the voice performers mentioned that her character is autistic.   Earlier this year, an autistic fan wrote to director Jeff Kaplan. Andrew McMillen writes at Wired:

Dear Mr. Kaplan,” Samuel began, “My main question is about Symmetra. She’s my favorite character, hands down. I just wanted to clarify: Is Symmetra autistic? As an autistic person myself, I’d love to know.”

He addressed the letter to Blizzard Entertainment’s offices in Irvine, California, expecting not to hear back. A month later, a letter arrived.

“Dear Samuel,” wrote Kaplan, “I’m glad you asked about Symmetra. Symmetra is autistic. She is one of our most beloved heroes and we think she does a great job of representing just how awesome someone with autism can be.”

Word quickly spread on the Internet, but hints were already around.

In May 2016, just before the game’s release, Blizzard hinted at Symmetra’s autism when it published an online comic named A Better World. In the 10-page strip, Symmetra was shown to be uncomfortable in crowds, and went out of her way to adjust a crooked picture frame during an important business meeting. Symmetra’s inner monologue referenced her being “different,” and hinted that others had asked her “where [she] fit on the spectrum.”

Symmetra‘s voice actor learned about this element of her character at the same time as those who read the comic. “I loved that it was so lightly touched-on,” says Anjali Bhimani, an Indian-American actor who is best known for on-screen roles in Modern Family, Silicon Valley, and Criminal Minds. “It is not the defining characteristic, or even a defining characteristic of the many that she has...Had they told me that earlier on, I think somewhere in the back of my mind, I would have given that more weight than necessarily would have been appropriate.” By taking such a subtle approach to the character’s autism, Blizzard gracefully avoided Symmetra becoming yet another TV special-style example of spectrum disorder. Similarly, the list of autistic characters that have appeared in video games is short—just 10 characters since 2001, including Symmetra.

TV Report on Adult Autism

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.” 

At WNDU-TV in South Bend, IN, Maureen McFadden reports:

We’re spending a huge amount of money on how to make sure that people like us don’t exist,” explains Julia Bascom. 

Julia is the executive director at the Autistic Self Advocacy Network and thinks our work with autism is misguided. 

“Autistic life can be a good life. It’s a life worth living. But, we spend a shockingly disproportionate amount of money on cure and prevention, as opposed to on services and support,” she states.

DeVos Ponders Rollback of Minority Special Education Rule

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

Michael Stratford at Politico:

Education Secretary Betsy DeVos has been weighing whether to delay and possibly scrap an Obama-era rule aimed at ensuring minority students aren’t placed in special education classes more often than necessary, Caitlin Emma reports. An unpublished draft of a Federal Register notice obtained by POLITICO shows that the Education Department has considered seeking input on whether that rule should be delayed by two years — and whether it should eventually be modified, replaced, removed or left unchanged. An Education Department official said the draft is an early version of the notice and has been significantly revised, but did not challenge its veracity. Caitlin has the story.

...
Democrats on Wednesday night pounced on the news that DeVos has considered delaying the rule. “Why is it that key civil rights protections for students always seem to be on the chopping block for @BetsyDeVosED?,” Sen. Tim Kaine (D-Va.) asked on Twitter. Sen. Bob Casey (D-Pa.) said in a tweet that it “seems Betsy DeVos is on a mission to decimate basic protections for students at all levels.”House Minority Leader Nancy Pelosi said: “Instead of continuing this Admin’s civil rights attacks, @BetsyDeVosED *should* be expanding opportunities for all. Clearly, she is failing.”

Amanda Terkel at HuffPost:

A HuffPost/YouGov poll conducted Oct. 9-10 found that, indeed, DeVos is Trump’s most unpopular Cabinet official, alongside Jeff Sessions, the much more visible attorney general. DeVos and Sessions both have a 42 percent unfavorability rating in that poll. When asked which Cabinet members are doing a “bad job,” 32 percent of respondents picked Sessions and 32 percent picked DeVos. Thirty-seven percent of respondents said DeVos is doing a worse job than her predecessors, with just 20 percent saying she’s doing better and 12 percent saying she’s doing about the same.

A recent Morning Consult/Politico poll had similar results: DeVos was Trump’s most unpopular Cabinet secretary, with a net favorability rating of -12 percent, followed by Sessions, who was at -4 percent.

And in June, New York Times columnist Gail Collins conducted a reader poll for worst Trump Cabinet member. DeVos won.

DeVos is now a household name for many Democrats ― so much so that she has essentially become a new boogeyman for 2018. Democratic candidates nationwide are mentioning her in their fundraising emails.

Update on the Buckeye Scandal

In The Politics of Autism, I discuss interactions between police and autistic people.   Police officers need training to respond appropriately.  When they do not, things get out of hand.

In Phoenix, Dave Biscobing reports at KNXV-TV:

The Buckeye police officer, who traumatized an autistic child he mistook for a drug user, has a mixed record that includes high praise for his DUI enforcement but also multiple concerns over potential acts of cowardice and unconstitutional stops, records show.

Officer David Grossman was hired by the Buckeye Police Department in 2009.
...
In 2011, Grossman was put under an extensive “performance improvement plan.” The plan sought to correct several instances of unconstitutional actions, poor report writing and issues with his vehicle operation.

But most concerning, the plan addressed multiple police calls in which supervisors felt Grossman "failed to act" in critical situations, which violated department policies that cover “cowardice" and "unsatisfactory performance."

One of the situations was so concerning that a supervisor questioned Grossman’s fitness for the job.

“I am concerned that your situational awareness may not be adequate for the rigors of law enforcement,” the supervisor wrote.

Education Department Guidance Rollback, Take Two

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

At Education Week, Christina Samuels explains that the Education Department's rollback of some special education/rehab guidance ran into criticism from groups that distrust the administration.

On Tuesday, the Education Department tried again. It released the same list of rescinded regulations, but now the list includes explanations of just why these particular documents were targeted. As I noted last week, the guidance and memos are decades old, were created for a limited purpose, or have been superseded by newer laws and regulations.

"There are no policy implications to these rescissions," said Liz Hill, a department spokeswoman. "Students with disabilities and their advocates will see no impact on services provided."

But this dustup demonstrates how disability advocates are on a hair trigger when it comes to this administration—and they have been from the start, when Education Secretary Betsy DeVos stumbled during her confirmation hearing over questions of special education policy.

And though these particular guidance documents are just old, the department has made substantive changes in policy that angered many civil rights, including ending an Obama-era policy of seeing whether individual civil rights complaints might be caused by systemic violations, and requirements that schools allow students to use the restrooms and locker rooms that matched their gender identity.

Why don't disability advocates trust the Trump Administration?  Because it's not trustworthy.  At Pacific Standard, David Perry writes:

It's possible that, once experts have slogged through each of the documents and double-checked all standards, we will discover that these specific revocations aren't a crisis. The fear, however, will continue, because the disability-rights community is feeling the strain of being targeted by the Trump administration and the GOP in so many different ways. Over the summer, the slew of attacks on Medicaid left many disabled people and their caregivers terrified about losing health care, and about whether they'd be able to live in communities rather than institutions. Now, the Department of Education is issuing this mass revocation of guidelines. There's no reason to believe things won't get worse. Nish Weiseth, a writer and parent of a disabled child, characterized the recent move as an instance of this administration "keeping disabled people and their families in a perpetual state of trauma.

Pushback Against a WiFi-Autism Link

In The Politics of Autism, I discuss various ideas about what causes the condition.

Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:

• Pesticides;
• Air pollution and proximity to freeways;
• Maternal thyroid issues;
• Autoimmune disorders;
• Induced labor;
• Preterm birth;
• Birth by cesarean section;
• Maternal and paternal obesity;
• Maternal and paternal age;
• Maternal post-traumatic stress disorder;
• Smoking during pregnancy;
• Antidepressant use during pregnancy;

Not to mention fever during pregnancy.

There is another, though with some pushback. Tom Chivers at Buzzfeed:

The journal Child Development published what was described as a "review article" –an assessment of existing literature – by Cindy Sage and Ernesto Burgio. It was titled "Electromagnetic Fields, Pulsed Radiofrequency Radiation, and Epigenetics: How Wireless Technologies May Affect Childhood Development", and was published in a "special section" of the journal addressing technology risks.

The paper got picked up by the UK national media. An article in the Express, published in May, asked: "Could wireless technology be causing MAJOR health problems in your children?"

It said: "Wireless mobile phones, laptops and tablets could be causing major health problems in children and contributing to autism and hyperactivity, a new study warns," and said that these devices, "which even include baby monitors, emit radiation and electromagnetic fields that pierce thin skulls, harming memory, learning and other mental skills".

However, a new paper published in the journal PeerJ by Dorothy Bishop, a professor of developmental psychology at the University of Oxford who specialises in developmental conditions such as autism, and David Robert Grimes, a medical physicist also at the University of Oxford, has issued severe doubts about the study. They said its claims are "devoid of merit" and "should [not be] given a veneer of legitimacy".

The Pope v. Eugenics

In The Politics of Autism, I write about the dangers of eugenics and euthanasia.

Elise Harris at the Catholic News Agency:

While great strides have been made in recent years in terms of recognizing the dignity of every person, especially the weakest and most vulnerable, “at the cultural level there are still expressions that undermine the dignity of these people due to the prevalence of a false conception of life,” the Pope said Oct. 21.

“An often narcissistic and utilitarian vision unfortunately leads not a few to consider people with disabilities as marginal, without perceiving in them the multifaceted human and spiritual wealth,” he said.

Far too prevalent in common thought is also “an attitude of rejection” toward people with disabilities, as if their handicap “impedes them from being happy and fully realizing themselves,” he said.

“This is proven by the eugenic tendency to suppress the unborn who have some form of imperfection.”

An example of this “eugenics” mentality is a recent article in CBS News claiming that Iceland has come close to being the first country to “eradicate” Down syndrome, meaning they are aborting every unborn child found to have the condition.

Pope Francis offered his comments to participants in a Vatican-sponsored conference dedicated to catechesis for those with intellectual disabilities, titled “Catechesis and Persons with Disabilities: A Necessary Engagement in the Daily Pastoral Life of the Church.”

Scrapping Guidance

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

At Education Week, Christina Samuels reports on a Trump effort to reduce regulations.

On Friday, the federal office for special education and rehabilitative services took its first crack at clearing the book of "outdated, unnecessary or ineffective regulations." In all, 63 pieces of guidance from the office for special education were identified for elimination.

That sounds like a lot. But it appears that many of the guidance documents were targeted because they're just very old. Fifty of the guidance documents marked for elimination predate the most recent reauthorization of the Individuals with Disabilities Education Act, which was passed in November 2004. For example, one memo, which does not have a link available, is a 35-year-old letter to state chiefs about data collection for fiscal year 1983.
...
This is just the first step in the process of clearing out old regulations and guidance; the department noted that it is still analyzing public comments.

But it's noteworthy that within special education, there are some pretty important regulations that cannot be eliminated or even substantively modified through this process, because the Individuals with Disabilities Education Act forbids it. Those include regulations related to parental consent to initial evaluation or initial placement in special education, least restrictive environment, timelines, and attendance of evaluation personnel at individualized education program meetings.

Those very substantive regulations were in place prior to July 20, 1983, and the IDEA says they can't be "procedurally or substantively lessened" without "the clear and unequivocal intent of Congress in legislation."

At Disability Scoop, Michelle Diament points out that the Department rescinded nine documents from the Rehabilitation Services Administration

Autistic College Students Are in Distress

In The Politics of Autism, I discuss the growing number of college students on the spectrum.

At The Journal of Autism and Developmental Disorders, Scott L. J. Jackson, Logan Hart, Jane Thierfeld Brown and Fred R. Volkmar have a brief report titled "Self-Reported Academic, Social, and Mental Health Experiences of Post-Secondary Students with Autism Spectrum Disorder."

The abstract:

Increasing numbers of individuals with autism spectrum disorder (ASD) are enrolling in post-secondary academic institutions. However, research indicates that post-secondary students with ASD are struggling more than their typically developing peers, with high rates of loneliness, anxiety, depression, and an increased incidence of dropping-out before completion of their degrees. The current study utilized an online survey to gain insight into the self-reported academic, social, and mental health experiences of post-secondary students with ASD. Participants reported high levels of academic comfort, but struggled with issues of isolation/loneliness and high levels of stress, anxiety, and depression. Of greatest concern, were the nearly three-quarters of participants who reported lifetime suicidal behaviors. Further analysis on collected data and implications of findings are discussed.

From the article:

Currently students with ASD are entitled to the supports and accommodations offered by post-secondary academic institutions after disclosing their diagnosis to educational support staff. However, many of the major areas of difficulty encountered by students with ASD in this study, as well as those in previous works (Gelbar et al. 2015; Anderson and Butt 2017), are not always fully covered or addressed by their school’s disability support office (Brown et al. 2014). Initial research suggests that students with ASD possess a fairly unique profile of challenges and needs compared to students with other disabilities such as ADHD (Elias and White 2017). As such, the accommodations typically granted to students with learning disabilities (e.g. extra time on exams, or separate test rooms), may not be as helpful for students with ASD or fully meet their needs (Brown et al. 2014). While a growing number of schools are beginning to implement programs specifically for students with ASD (Brown et al. 2014), providing parents and disability providers with appropriate knowledge and information on what to look out for and how they might facilitate this group of student’s success while in post-secondary education may represent a beneficial intermediate step. Mirroring suggestions of the study participants, the findings from the current study would suggest that colleges could help these students improve their experience at school with support programs designed to build social skills/networks (e.g. peer-mentor programs, ASD housing/clubs), and by improving the availability and quality of  ounseling/psychological services. It should additionally be noted that the estimated 0.7–1.9% of college students that would qualify as having ASD but are currently undiagnosed (White et al. 2011), would likely benefit from these specialized services, but will be unable to gain access to them without a formal diagnosis. As such, it is important for universities to keep an eye out for students in this category, who may otherwise fall through the cracks of the school system, so that they may help them navigate the process of gaining access to any support services they may need to achieve their potential in post-secondary academics.

Bill to Weaken ADA

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

Senator Tammy Duckworth (D-IL) in the Washington Post writes that ADA sought to tear down the wall of discrimination against the disabled.

Decades later, the forces of discrimination are working hard to rebuild that wall. Led by the hospitality and retail industries, special interests want to shift the burden of ADA compliance away from business owners and onto individuals with disabilities. They’re backing a bill that has already passed the House Judiciary Committee, the so-called ADA Education and Reform Act, which would reward businesses that fail to comply with the law. The bill would allow businesses to wait until they are notified of their failure to meet legal obligations before they even have to start removing barriers that prevent Americans with disabilities from leading independent lives.

This offensive legislation would segregate the disability community, making it the only protected class under civil rights law that must rely on “education” — rather than strong enforcement — to guarantee access to public spaces. As the Consortium for Citizens with Disabilities Rights Task Force and other civil rights organizations wrote in opposing this bill, “We know of no other law that outlaws discrimination but permits entities to discriminate with impunity until victims experience that discrimination and educate the entities perpetrating it about their obligations not to discriminate.”

From his wheelchair, Rep. Jim Langevin (D-RI) spoke against the bill last month.

Another Retracted Vax Study

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

Retraction Watch:

A journal is planning to retract a paper that purported to link a component of vaccines to autism in mice.

The paper, about the effects of aluminum adjuvants in vaccines on the immune response in the brains of mice, is the second retraction for co-authors Christopher Shaw and Lucija Tomljenovic, of the University of British Columbia. The journal’s editor told us he and the authors are jointly retracting the paper.

Just over a month old, the paper has already received plenty of criticism. Numerous commenters on PubPeer have allegedly identified image duplications and other problems with the paper. One commenter described “clear and deliberate” removal of control results in the paper, while others suggested gel bands were duplicated within the paper, and appear similar to those from another paper published in 2014 by Shaw and Tomljenovic. In a blog post, David Gorski, a professor and surgeon at Wayne State University, called the paper “antivaccine pseudoscience.”

Review of Politics of Autism

In The Journal of Health Politics, Policy and Law, Theodore R. Marmor reviews The Politics of Autism.  An excerpt:

Pitney might have addressed autism as Medical Care Politics in America: The Case of Autism. But he did not, and therein lies an interesting set of analytic issues. Isn’t autism a topic in medical care just as the politics of cancer or the politics of abortion? The short answer is no and for two good reasons.

First, cases of politics in, for example, an industry such as medical care do not add up to a politics of medical care. The stakes, contestants, and forms of policy politics vary. Conflicts over hospital closures, for example, differ greatly from the regulatory battles of the drug industry or the financing of Medicare. To repeat, the undeniably truthful assertion of politics in  an industry does not entail that there is a politics of that industry.

The variation in how one can think about policy politics is substantial in other ways. One can emphasize the institutional setting of the struggle (Congress, the courts et al.), the interest group players (the American Medical Association or unions and governmental targets of influence), the topics of intense conflict (e.g., budgets or prison treatment of racial groups), the character of the dispute (quiet or noisy), and so on.

Pitney does not follow any one of these modes. He instead selects from the options those approaches most likely to resolve puzzles about American treatment of the science of autism, the realities of programs in place or proposed, and what he regards as the extraordinary complexity of this arena of policy politics.

Improving the Employment Prospects of Autistic People: A Pilot Study

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. 

At Autism, Mary J Baker-Ericzén and colleagues have an article titled "Development of the Supported Employment, Comprehensive Cognitive Enhancement, and Social Skills Program for Adults on the Autism Spectrum: Results of Initial Study."  The abstract:

The population of adults on the autism spectrum continues to increase, and vocational outcomes are particularly poor. Longitudinal studies of adults with autism spectrum and without intellectual disability have shown consistent and persistent deficits across cognitive, social, and vocational domains, indicating a need for effective treatments of functional disabilities as each impact employment. This initial pilot study is an open trial investigation of the feasibility, acceptability, and initial estimates of outcomes for the newly developed Supported Employment, Comprehensive Cognitive Enhancement, and Social Skills intervention, a manualized “soft skills” curriculum, to enhance both cognitive and social development in adults with autism spectrum. A total of eight adults with autism spectrum, without intellectual disability (78% males), participated in the study. Results support the original hypothesis that adults with autism spectrum can improve both cognitive (i.e. executive functioning) and social cognitive (i.e. social thinking and social communication) abilities. Further Supported Employment, Comprehensive Cognitive Enhancement, and Social Skills was found to be feasible, acceptable, and highly satisfactory for participants and parents. Employment rates more than doubled post-intervention, with an increase from 22% to 56% of participants employed. Conclusion is that Supported Employment, Comprehensive Cognitive Enhancement, and Social Skills has promise as an intervention that can be easily embedded into exiting supported employment vocational training programs to improve cognitive, social, and vocational outcomes.

Perspectives on Transition Outcomes

The Politics of Autism explains that autism services can be complicated, creating difficulties for autistic people and their families.  Uncertainty another major theme of the  book.  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 Autism, an article titled "Parents’ and Young Adults’ Perspectives on Transition Outcomes for Young Adults with Autism," by Collette Sosnowy, Chloe Silverman, Paul Shattuck.

The abstract:

Existing research shows that young adults with autism spectrum disorder have poorer outcomes than their peers with other developmental disabilities in the key areas of independent living, postsecondary education, and employment. However, we understand little about how young adults with autism and their families understand and value outcomes and whether these indicators match their goals and aspirations. We interviewed parents (n = 21) and young adults with autism spectrum disorder (n = 20) about their experiences with the transition to adulthood to understand what they consider to be desirable outcomes and how they seek to achieve them. Understanding these perspectives will help identify areas of need as well as disconnections between service objectives and the goals of young adults and their families. Participants described outcomes as more complex and nuanced than current conceptions and measures account for. They defined and evaluated outcomes in relation to their or their child’s individual abilities, needs, and desires. These findings provide important insight into challenges to and facilitators of desired outcomes, which has implications for programming, service delivery, and policy.

Back to the cliff. From the study:

The finding that young adults and parents see services and supports as inadequate is not surprising, given the significant drop-off in services after high school. This study suggests that services that are currently available may be inadequate in part because they do not align with young adults’ and parents’ priorities and do not offer the kind of help they need to support the transition to adulthood. Overall, both parents and young adults made it clear that supports and services needed to be flexible enough to meet individual needs and be more comprehensive, continuous, and integrated in order to be most useful. However, few services and supports work this way, and it is a challenge for the field to address this need.

Segregating Disabled Georgians

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

From The Center for Public Representation:

On October 11, 2017, parents of children with disabilities, the Center for Public Representation, the Bazelon Center for Mental Health Law, the Georgia Advocacy Office, The Arc, DLA Piper LLP, and the Goodmark Law Firm filed a class action lawsuit in federal court alleging that the State of Georgia has discriminated against thousands of public school students with disabilities by providing them with a separate and unequal education via the State’s Georgia Network for Educational and Therapeutic Supports Program (GNETS). The complaint, filed in United States District Court for the Northern District of Georgia, alleges that the State, in denying GNETS students the opportunity to be educated with their non-disabled peers in neighborhood schools violates the Americans with Disabilities Act, Section 504 of the Rehabilitation Act of 1973, and the Fourteenth Amendment to the United States Constitution. Read this fact sheet or press release to learn more about the lawsuit.

The state of Georgia is unique in having established a state-wide educational program—GNETS—that systematically segregates students with behavioral disabilities across the state. Over 5,000 students with disabilities, the disproportionate majority of whom are students of color, have been sent to the GNETS centers. Most of the GNETS centers are housed in completely separate schools (including some that were formerly schools for African-American students in the Jim Crow days). Other GNETS centers are inside regular schools but typically are housed in locked wings or have separate entrances, effectively operating as a separate school within the school. GNETS students are not only segregated from their non-disabled peers but also receive an inferior education.

Typically, GNETS students are not taught by certified teachers; many are primarily taught through computers. Students cannot access the basic classes they need to earn a diploma, resulting in a graduate rate of GNETS students of only 10% (compared to a statewide rate of 80%). Many GNETS centers do not provide access to basic school services like gyms, libraries, or science labs. In addition, GNETS students are deprived of important co-curricular opportunities that other students enjoy, such as playing sports or participating in the school play. Parents and students have described GNETS as similar to a prison, with no way out. Learn more about GNETS with these infographics or here.

In 2015, the U.S. Department of Justice investigated GNETS and found that it violates Title II of the ADA by (1) unnecessarily segregating students with disabilities from their peers and (2) providing opportunities to GNETS students that are unequal to those provided to other students throughout the state. The investigation eventually culminated in a 2016 lawsuit against the State, alleging that the State’s administration of the GNETS system violates the ADA by “unnecessarily segregating students with disabilities from their peers” and providing “unequal” education opportunity to GNETS students. On August 11, 2017, the DOJ’s lawsuit was put on hold pending a decision from the 11th Circuit Court of Appeals regarding DOJ’s authority to bring suit. Throughout, the State has continued to defend the GNETS program.

A broad coalition of disability, educational, mental health, child welfare, juvenile justice, civil rights and parent and youth advocacy groups from across Georgia have joined together around shared concerns about the GNETS program. Learn more about the Georgia Coalition for Equity in Education.

If you have questions about this lawsuit or need assistance related to GNETS, contact the Georgia Advocacy Office by phone at (404) 885-1234 (or toll-free in Georgia at 1-800-537-2329) or by email at info@thegao.org.

Trump's Executive Order

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

Yesterday, Trump signed an executive order on health care.

Kyli Rodriguez-Cayro writes at Bustle:

[On] Oct. 12, Trump signed a health care executive order meant to undermine and dismantle Obamacare. According to CNN, the executive order “would allow consumers to buy short-term policies, which don't have to comply with Obamacare's protections for those with pre-existing conditions.” Essentially, with this executive order, many disabled people, and the protections they receive through the ACA, will be seriously impacted.

Trump’s executive order is predicted to be part of a larger plan to gut Obamacare — a plan being called a “synthetic repeal.” The term was coined on Twitter by Andy Slavitt, who served as Acting Administrator for the Centers for Medicare & Medicaid Services during the last two years of Obama’s presidency. Slavitt believes following the Oct. 12 order, the Trump administration will continue to destabilize the health marketplace — without the help of Congress — until the ACA fails. In response to Trump’s executive order and the possible backdoor repeal, Bustle spoke with Stacy Stanford, a disability rights advocate and community organizer who works with Utah Health Policy Project.

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One thing is very clear: tomorrow the ACA is officially no longer Obamacare. It's Trumpcare. https://twitter.com/aslavitt/status/918278371011854336 …

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Though the executive order and possible “synthetic repeal” will negatively affect many marginalized communities, it poses an especially great risk to people with disabilities. Stanford tells Bustle, “Introducing more options for healthy people to buy less-comprehensive coverage, removed from the protections of the Affordable Care Act, only increases the burden on sick and disabled people.” By effectively giving non-disabled people the choice to buy insurance plans that include less coverage, premiums for disabled people will increase dramatically.

From ASAN:

The Autistic Self Advocacy Network (ASAN) condemns the executive order issued by President Trump today attacking critical protections for people with disabilities in the Affordable Care Act (ACA). The executive order would make it easier for insurance companies to discriminate against people with pre-existing conditions, and could allow insurers to sell junk coverage that doesn’t cover critical services and won’t protect people from soaring health care costs. The American people have clearly and repeatedly rejected this kind of proposal. As ASAN has stated in the past, any future attempts at health care reform must meet the needs of all Americans, leave the Medicaid program intact, and proactively include the disability community from the beginning of the process. ASAN calls on the Trump administration to listen to the voices of everyday Americans, stop attempting to sabotage the ACA, and support a bipartisan process in Congress. Our government must work to develop thoughtful and carefully considered proposals that make healthcare better for everyone and increase access to quality, affordable coverage rather than endangering the lives of people with disabilities.