<?xml version="1.0" encoding="UTF-8"?><feed
	xmlns="http://www.w3.org/2005/Atom"
	xmlns:thr="http://purl.org/syndication/thread/1.0"
	xml:lang="en-US"
	>
	<title type="text">Ari Ne'eman | Vox</title>
	<subtitle type="text">Our world has too much noise and too little context. Vox helps you understand what matters.</subtitle>

	<updated>2019-03-06T00:14:10+00:00</updated>

	<link rel="alternate" type="text/html" href="https://www.vox.com/author/ari-neeman" />
	<id>https://www.vox.com/authors/ari-neeman/rss</id>
	<link rel="self" type="application/atom+xml" href="https://www.vox.com/authors/ari-neeman/rss" />

	<icon>https://platform.vox.com/wp-content/uploads/sites/2/2024/08/vox_logo_rss_light_mode.png?w=150&amp;h=100&amp;crop=1</icon>
		<entry>
			
			<author>
				<name>Ari Ne&#039;eman</name>
			</author>
			
			<title type="html"><![CDATA[The CDC just announced one in 59 children are autistic. Here’s why that’s not evidence of an epidemic.]]></title>
			<link rel="alternate" type="text/html" href="https://www.vox.com/the-big-idea/2018/4/28/17295398/cdc-autism-rates-epidemic-diagnosis-vaccines-myth" />
			<id>https://www.vox.com/the-big-idea/2018/4/28/17295398/cdc-autism-rates-epidemic-diagnosis-vaccines-myth</id>
			<updated>2018-04-30T11:58:42-04:00</updated>
			<published>2018-04-30T08:21:58-04:00</published>
			<category scheme="https://www.vox.com" term="Health" /><category scheme="https://www.vox.com" term="Health Care" /><category scheme="https://www.vox.com" term="Mental Health" /><category scheme="https://www.vox.com" term="Policy" /><category scheme="https://www.vox.com" term="Politics" /><category scheme="https://www.vox.com" term="Science" /><category scheme="https://www.vox.com" term="The Big Idea" />
							<summary type="html"><![CDATA[The Centers for Disease Control and Prevention this week released the latest autism prevalence numbers, which suggest that approximately one in 59 children are autistic. This represents an increase from the CDC&#8217;s previous estimate, released in 2014, of one in 68. And it&#8217;s a truly remarkable increase over the 2007 estimate, which reported that one [&#8230;]]]></summary>
			
							<content type="html">
											<![CDATA[

						
<figure>

<img alt="" data-caption="A father with his seven-year-old autistic son. | Joe Amon/The Denver Post/Getty Images" data-portal-copyright="Joe Amon/The Denver Post/Getty Images" data-has-syndication-rights="1" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/5920295/161183077.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" />
	<figcaption>
	A father with his seven-year-old autistic son. | Joe Amon/The Denver Post/Getty Images	</figcaption>
</figure>
<p>The Centers for Disease Control and Prevention this week <a href="https://www.cdc.gov/mmwr/volumes/67/ss/ss6706a1.htm">released the latest autism prevalence numbers</a>, which suggest that approximately one in 59 children are autistic.</p>

<p>This represents an increase from the CDC&rsquo;s previous estimate, released in 2014, of one in 68. And it&rsquo;s a truly remarkable increase over the 2007 estimate, which reported that one in 150 children &mdash; the periodic study focuses on 8-year-olds &mdash; were autistic.</p>

<p>As the release date for the new CDC numbers approached, conspiracy theorist Alex Jones <a href="https://twitter.com/RealAlexJones/status/987104557162524672">blasted</a> policymakers for &ldquo;denying and refusing to tackle our nation&rsquo;s staggering autism epidemic.&rdquo; But such views were not hard to find echoed on social media, even from figures within the autism world:</p>
<figure class="wp-block-embed is-type-rich is-provider-twitter wp-block-embed-twitter alignnone"><div class="wp-block-embed__wrapper">
<blockquote class="twitter-tweet" data-dnt="true"><p lang="en" dir="ltr">I mean how stupid does the <a href="https://twitter.com/cdc?ref_src=twsrc%5Etfw">@CDC</a> think people are? 1 in 59 American kids suddenly have autism and it is not environmental <a href="https://t.co/sVNX5BBhQC">https://t.co/sVNX5BBhQC</a></p>&mdash; katie wright (@katiewr31413491) <a href="https://twitter.com/katiewr31413491/status/989610990915420160?ref_src=twsrc%5Etfw">April 26, 2018</a></blockquote>
</div></figure><div class="twitter-embed"><a href="https://twitter.com/Drive4Autism/status/989654204309438465" target="_blank" rel="noopener noreferrer">View Link</a></div>
<p>There is no autism epidemic, however. The numbers are likely changing due to improved diagnosis and services, more inclusive diagnostic criteria and reduced stigma rather than a change in the actual number of autistic people.&nbsp;</p>

<p>They should absolutely not be used to give credence to discredited theories that, for instance, vaccines cause autism.</p>
<h2 class="wp-block-heading">What the numbers really show us </h2>
<p>These findings are consistent with what previous research has told us &mdash; that autism likely exists in 1 to 3 percent of the general population. These studies have shown a consistent range of autism prevalence across different populations, researchers, and countries. Conducted both <a href="https://jamanetwork.com/journals/jama/article-abstract/2667712?redirect=true">in the United States</a> and in <a href="https://www.nytimes.com/2011/05/09/health/research/09autism.html">other developed countries</a>, this research has found that there exists a large undiagnosed autistic population, particularly among older adults (who grew up before the modern understanding of autism), and among underserved groups.</p>

<p>&ldquo;I am glad the CDC&rsquo;s autism prevalence rates are becoming more realistic,&rdquo; said Shannon Rosa, editor of the <a href="http://www.thinkingautismguide.com/">Thinking Person&rsquo;s Guide to Autism</a>, a popular publication among both autistic adults and family members, &ldquo;I hope wider understanding of what this data adjustment means will lead to more autism acceptance, as well as better autism services.&rdquo;</p>

<p>Unfortunately, not everyone was so measured in their response. Talk About Curing Autism, an&nbsp;organization affiliated with the anti-vaccine movement, <a href="https://www.businesswire.com/news/home/20180426006402/en/Autism-Prevalence-1-59-Rate-Increases-15">announced</a> after the CDC report that &ldquo;a prevalence rate of 1 in 59 cannot be ignored. Families are counting on us to act and support as we can no longer ignore this epidemic.&rdquo;</p>

<p>The idea that autism represents a recent and unprecedented phenomenon is an article of faith among those parents who continue to believe that autism is caused by vaccines, despite a wealth of scientific evidence debunking the idea. Just as science has debunked the vaccine causation hypothesis, it also casts strong doubt that any autism &ldquo;epidemic&rdquo; exists.</p>

<p>Grasping that the numbers represent better identification of a population that has always existed should lead to important policy shifts. Rather than searching for the cause of a nonexistent surge in the condition, we can focus on the needs of autistic people as a population long misidentified, or not identified at all.</p>

<p>Many autistic adults have gone through life without knowing why they are different, a deeply stressful experience. After decades of social isolation, underemployment or unemployment, and even homelessness, receiving a diagnosis that explains how your brain works can be truly liberating.</p>

<p>And if the rate of autism has long been stable, policymakers and funders should rethink the public response to autism. If rates are increasing, it follows that there are fewer autistic adults relative to autistic children; if rates are <em>not</em> increasing, then adults are underdiagnosed. It&rsquo;s the latter that&rsquo;s likely to be true. Yet only about 2 percent of autism research funding goes toward the needs of adults.</p>

<p>A brief glance at Talk About Curing Autism&rsquo;s <a href="https://tacanow.org/ways-to-help/sponsors/">sponsor list</a> shows a dizzying array of companies hoping to sell pseudoscientific &ldquo;treatments&rdquo; geared at &ldquo;recovery&rdquo; from autism. Those hawking such treatments depend on frightening parents into believing that their child has fallen victim to a terrifying new condition.</p>

<p>Autistic people have long criticized the heavy emphasis on trying to make us look and act like non-autistic people. The search for a &ldquo;cure&rdquo; or &ldquo;recovery&rdquo; has been profoundly harmful, often justifying abusive interventions. Even today, many autistic children are taught from a young age that hand-flapping, lack of eye contact, or rocking &mdash; perfectly natural and normal mannerisms for autistic children &mdash; are inherently wrong.</p>

<p>A much sounder view is reflected in a statement on the new CDC numbers by the Autistic Self Advocacy Network (full disclosure: I co-founded that organization and ran it for 10 years, and currently serve on its board of directors) &ldquo;Autism is not a bad thing, and autistic people &mdash; of all ages, races, and genders &mdash; have always been here &hellip; our data is beginning to catch up to that fact.&rdquo;</p>

<p>Recognizing that autism prevalence has largely remained stable, even as our understanding of it has changed, means we can trade the urgency of a false public health crisis for the urgency of meeting the unmet needs of autistic people of all ages.</p>
<h2 class="wp-block-heading">Evidence abounds that it’s all about better diagnosis</h2>
<p>Analyzed properly, the CDC&rsquo;s report includes some good news. For one thing, autism prevalence rates are rising in part because racial disparities in access to accurate diagnosis are closing.</p>

<p>In earlier CDC reports, white children were 20 to 30 percent more likely than black children to receive an autism diagnosis, and about 50 percent more likely than Hispanic children to receive a diagnosis. Now those gaps stand at 7 percent and 22 percent. More work remains to be done, but <a href="https://www.cdc.gov/mmwr/volumes/67/ss/ss6706a1.htm">CDC&rsquo;s data</a> suggests that much of the increase is due to closing these diagnostic disparities. (There&rsquo;s no reason to think there are racial or ethnic differences in autism rates.)</p>

<p>Research also suggests that nonwhite children are diagnosed at later ages than white children. (There&rsquo;s a telling inconsistency in racial disparities in diagnoses. Children of color are often overdiagnosed with learning disabilities and emotional disturbance&nbsp;&mdash; and then removed from general education.)</p>

<p>Similarly, we know that there are significant diagnostic disparities by gender. These gaps were also narrowed in the new CDC report, though not by as much as race. The agency&rsquo;s most recent prior report (in 2014) identified 4.5 autistic boys for every one autistic girl; that ratio narrowed to 4 to 1 in the new report. While some experts continue to believe that there are significantly fewer autistic girls than boys, a <a href="http://www.bbc.com/news/health-37221030">growing</a> <a href="https://www.smithsonianmag.com/smart-news/autism-is-likely-under-diagnosed-in-women-due-to-gender-bias-28003167/">amount of</a> <a href="https://theconversation.com/the-women-who-dont-know-theyre-autistic-80991">evidence</a> is showing that we continue to severely underdiagnose autistic women and girls.</p>

<p>Prevalence estimates also varied tremendously on the basis of geography, with New Jersey having the highest estimates and Arkansas the lowest. This too should not surprise us &mdash; the difference in New Jersey and Arkansas&rsquo;s infrastructure for diagnosis and service provision is significant.</p>

<p>The CDC&rsquo;s new prevalence numbers should not be used for scaremongering. Rather, they provide valuable information on the need to better address diagnostic and service disparities among autistic children &mdash; by race and ethnicity, by gender, and by region. And by age: The CDC currently only studies autism prevalence in 8-year-olds but has yet to act on calls to study prevalence in adults too.</p>

<p>When <a href="https://en.wikipedia.org/wiki/Autism_CARES_Act_of_2014">the Autism CARES Act</a> comes up for reauthorization in Congress next year, it will provide an excellent opportunity to recalibrate resources to meet these priorities.</p>

<p>Meanwhile, the money spent by outside groups spreading alarmist concerns about an &ldquo;autism epidemic&rdquo; would be better spent on improving services for and protecting the rights of autistic people.</p>

<p>We&rsquo;ve always been here. The time has come to pay attention to what we have to say.</p>

<p><em>Ari Ne&rsquo;eman is chief executive officer of MySupport.com, an online platform helping people with disabilities and seniors connect to workers. Before that, he co-founded the Autistic Self Advocacy Network and ran the organization from 2006 to 2016. From 2010 to 2015, he served as one of President Barack Obama&rsquo;s appointees to the National Council on Disability. He is currently writing a book on the history of disability in America.</em></p>
<hr class="wp-block-separator" />
<p><a href="http://vox.com/the-big-idea">The Big Idea</a> is Vox&rsquo;s home for smart discussion of the most important issues and ideas in politics, science, and culture &mdash; typically by outside contributors. If you have an idea for a piece, pitch us at <a href="mailto:thebigidea@vox.com">thebigidea@vox.com</a>.</p>
						]]>
									</content>
			
					</entry>
			<entry>
			
			<author>
				<name>Ari Ne&#039;eman</name>
			</author>
			
			<title type="html"><![CDATA[Trump was right to lift a rule preventing some people with disabilities from buying guns]]></title>
			<link rel="alternate" type="text/html" href="https://www.vox.com/the-big-idea/2017/2/6/14522132/gun-control-parkland-disabilities-republicans-nra-obama-liberty" />
			<id>https://www.vox.com/the-big-idea/2017/2/6/14522132/gun-control-parkland-disabilities-republicans-nra-obama-liberty</id>
			<updated>2018-02-20T09:38:04-05:00</updated>
			<published>2018-02-19T13:48:31-05:00</published>
			<category scheme="https://www.vox.com" term="Politics" /><category scheme="https://www.vox.com" term="The Big Idea" />
							<summary type="html"><![CDATA[After the horrific shootings in Parkland, Florida, last week, President Donald Trump said very little about gun policy &#8212; but quite a bit about mental health. This has become a common move for many in the GOP, who hope to deflect a growing wave of pressure for stronger gun control laws. The president spoke of [&#8230;]]]></summary>
			
							<content type="html">
											<![CDATA[

						
<figure>

<img alt="" data-caption="President Obama calls for tougher gun-control laws at the Denver Policy Academy, in 2013. | Craig F. Walker / Getty" data-portal-copyright="Craig F. Walker / Getty" data-has-syndication-rights="1" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/7938673/GettyImages_165394259.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" />
	<figcaption>
	President Obama calls for tougher gun-control laws at the Denver Policy Academy, in 2013. | Craig F. Walker / Getty	</figcaption>
</figure>
<p>After the horrific shootings in Parkland, Florida, last week, President Donald Trump said very little about gun policy &mdash; but quite a bit about mental health. This has become a common move for many in the GOP, who hope to deflect a growing wave of pressure for stronger gun control laws.</p>

<p>The president spoke of mental health in his prepared remarks on the shooting and in <a href="https://twitter.com/realdonaldtrump/status/964110212885106689?lang=en">a tweet</a>:</p>
<img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/10256713/Trump.shooting.tweet..png?quality=90&#038;strip=all&#038;crop=0,0,100,100" alt="" title="" data-has-syndication-rights="1" data-caption="" data-portal-copyright="" />
<p>Trump&rsquo;s emphasis on mental health was reiterated by House Speaker Paul Ryan, Florida Gov. Rick Scott, and Attorney General Jeff Sessions, who <a href="http://abcnews.go.com/US/parkland-shooting-call-mental-health-reforms-gun-control/story?id=53114225">announced that he had instructed</a> the &ldquo;office of Legal Policy to &hellip; study the intersection of mental health and criminality.&rdquo;</p>

<p>As <a href="https://www.vox.com/policy-and-politics/2018/2/15/17016036/trump-guns-mental-illness">Vox&rsquo;s Matthew Yglesias pointed out</a>, there&rsquo;s considerable irony in President Trump pointing to people with mental illness as his main subject of concern after mass shootings. That&rsquo;s because one of the only actions his administration has taken on gun policy was signing a congressional repeal of an Obama-era rule restricting gun ownership for Social Security beneficiaries who have a psychiatric disability and use a &ldquo;representative payee&rdquo; to help manage their finances (typically a friend, family member, or third-party financial manager).</p>

<p>The Obama administration framed that regulation as a rare step forward on gun control that did not require action from a recalcitrant Republican Congress.</p>

<p>Many progressive commentators have been quick to point out Trump&rsquo;s hypocrisy and have condemned the administration for signing the repeal of that rule. As a liberal disability rights activist who <a href="http://www.vox.com/first-person/2016/11/9/13576712/trump-disability-policy-affordable-care-act"><strong>continues to</strong></a>&nbsp;<a href="http://www.vox.com/the-big-idea/2017/1/19/14314890/devos-disabilities-rights-idea-hassan"><strong>fight Trump</strong></a>, these people are normally my allies. But I can&rsquo;t join them in attacking Trump on this issue because Congress was right to repeal this particular regulation. It would have done nothing to prevent the Parkland shooting and would have set a dangerous precedent restricting the rights of people with disabilities without due process.</p>
<h2 class="wp-block-heading">Who makes use of a “representative payee,” and why?</h2>
<p>In December 2016, the Social Security Administration issued a new regulation that had the dubious distinction of bringing together pro-gun groups and advocates for civil rights and people with disabilities, including the ACLU and the Autistic Self Advocacy Network.</p>

<p>The rule required the agency to send names from its database of certain people receiving disability benefits who had a &ldquo;representative payee&rdquo; to the National Instant Criminal Background Check System (NICS). That&rsquo;s a federal database of people prohibited from purchasing a gun. Representative payees can be designated either by the beneficiary, or the agency.</p>

<p>More specifically, the new rule singled out people who use a representative payee and possess a mental impairment. People affected by the rule could have a range of mental disabilities, from dementia to autism to agoraphobia.</p>

<p>Predictably, in the run-up to the debate, gun-control groups and gun-rights groups lined up on opposite sides of the issue. But disability rights groups and civil rights organizations were also concerned that the rule lacked a solid connection to public safety and might serve to restrict the rights of people with mental disabilities in other areas. While there is broad consensus in favor of preventing those deemed as dangerous from owning firearms, not all people with mental illness fall into that category. Needing a representative payee was never intended as a marker that a person might be violent.</p>

<p>The issue had been brewing for a while. As far as back as 2013, the National Council on Disability, on which I served as an Obama appointee, <a href="http://www.ncd.gov/publications/2013/Jan142013"><strong>had written</strong></a>&nbsp;to the Vice President&rsquo;s Task Force to Curb Gun Violence pushing back against any measure linking up the SSA representative payee database with the criminal-background-check system. Around the same time,&nbsp;<a href="http://autisticadvocacy.org/2013/01/ndla-letter-to-the-vice-presidents-task-force-to-curb-gun-violence/"><strong>a coalition of 11 major disability rights groups</strong></a>&nbsp;issued a similar warning.</p>

<p>Accessing a representative payee is a common procedure for people with a wide variety of cognitive, developmental, and psychiatric disabilities. Far from implying an individual is permanently incapacitated, a representative payee is often used as a less-restrictive alternative to a court declaration that an individual is incompetent to manage their own affairs.</p>

<p>Representative payees are used in a variety of situations: An aging grandmother might delegate finances to her children, or parents of an autistic young adult might serve as his representative. A middle-aged man with an anxiety disorder might select a representative payee to ensure his rent gets paid on time.</p>

<p>Rhetoric around the rule has described those it would apply to in frightening terms, with references to the <a href="https://www.vox.com/policy-and-politics/2018/2/15/17016036/trump-guns-mental-illness">&ldquo;severely mentally ill&rdquo;</a> or those with <a href="https://www.msnbc.com/rachel-maddow/watch/trump-words-on-gun-tragedy-ring-hollow-given-past-legislation-1162946115643">&ldquo;serious debilitating mental illness,&rdquo;</a> but in fact, people using a representative payee experience many different levels of impairment.</p>

<p>All it means is that an individual may require some assistance in managing their money; particularly for younger people with disabilities, it&rsquo;s a common type of support.</p>

<p>The determination that someone should have a representative payee is very different from the determination that someone should be involuntarily hospitalized, a process that <em>does</em> include an evaluation of someone&rsquo;s risk to themselves and others. I and many other advocates who worked against the representative payee rule have no issue with reasonable restrictions on gun ownership for people in the latter category.</p>
<h2 class="wp-block-heading">From what we know, the Obama-era rule would not have applied to the Parkland shooter</h2>
<p>In Florida, where the Parkland shooting took place, <a href="http://www.orlandosentinel.com/news/os-does-florida-baker-act-work-20170823-story.html">the state&rsquo;s involuntary commitment law, the Baker Act, took 195,000 people into custody for mental health evaluations the 2015-2016 fiscal year,</a> less than 2 percent of whom were ultimately deemed a danger to self or others, and committed. (Many advocates fear that the Baker Act is overused, particularly for children.)</p>

<p>Most news reports have failed to note that, based on the best information available to us, the Parkland shooter would not have been identified by either definition of mental illness: He did not seem to have a representative payee or have a prior history of court-ordered involuntary commitment.</p>

<p>Much of the media discussion on this topic has been too broad &mdash; conflating many very different possible policies under the nebulous goal of &ldquo;preventing the mentally ill from buying guns.&rdquo; &nbsp;</p>

<p>But &ldquo;people with a mental illness&rdquo; is a vast category. In the most expansive definition, it covers <a href="https://www.nimh.nih.gov/health/statistics/mental-illness.shtml">about one in six Americans: nearly 45 million people</a>. No one intends to restrict gun ownership for all those people. Instead, restrictions focus on specific definitions of mental illness. But whatever definition is used should have some reasonable link to protecting the public. &nbsp;</p>
<h2 class="wp-block-heading">We worried this could set a precedent for other restrictions on autonomy</h2>
<p>During my time at the Autistic Self Advocacy Network, I heard from a number of autistic adults who were concerned that their use of a representative payee would prevent them from taking part in hunting and other aspects of rural culture involving firearms.</p>

<p>&ldquo;The rule didn&rsquo;t care that I&rsquo;m not a danger to myself or others,&rdquo; <a href="http://nosmag.org/disablity-gun-ssi-payee-rule-i-am-not-dangerous/">wrote</a> Savannah Logsdon-Breakstone, an autistic woman who would have been impacted by the regulation, &ldquo;[or] that having a &lsquo;rep payee&rsquo; manage my finances has been a boon for my mental health, one that has allowed me to decrease the impact that my anxiety has on my ability to live in my community. It just made an assumption, not based in evidence, that if I need help with my finances that I must be a danger.&rdquo;</p>

<p>Still, the primary reason I and other disability advocates opposed the rep payee rule is less about guns than it is about the precedent the rule might set for other kinds of rights.</p>

<p>These concerns are rooted in discrimination that people with mental disabilities face in other areas of life, such as&nbsp;<a href="http://www.ncd.gov/publications/2012/Sep272012"><strong>parenting</strong></a>&nbsp;and voting rights. People with mental disabilities often face an assumption of incapacity. Their advocates and lawyers often have to fight to overturn assumptions that a certain diagnosis, or a determination of need for support in one area, should lead to a loss of rights in an unrelated area. These advocates feared that using the representative payee database for prohibiting gun purchases might constitute a &ldquo;thin end of the wedge&rdquo; for loss of more important rights down the road.</p>

<p>Others <a href="http://thehill.com/blogs/congress-blog/civil-rights/316139-congress-should-rescind-social-security-regulation-that">have pointed out that</a> many jobs require clearance through the NICS database, even for roles in security, construction, transportation or other businesses that don&rsquo;t directly require the handling of a firearm. For those roles, even a temporary use of a representative payee could have barred future employment in those fields.</p>

<p>While some of these harms may seem minor or speculative to some, they are very real to a mental disability community that is heavily and inappropriately stigmatized by unfounded perceptions of violence.</p>

<p>It&rsquo;s not just that no research supports the premise that those who use representative payees are more likely to be perpetrators of gun violence than members of the general population. It&rsquo;s also that the statute authorizing representative payees explicitly allows people to make use of the program &ldquo;regardless of the legal competency or incompetency of the qualified individual.&rdquo; For many of these people, the system is a voluntary support they have chosen to access &mdash; and shouldn&rsquo;t be penalized for using.</p>
<h2 class="wp-block-heading">In the gun violence debate, both parties have failed people with mental disabilities</h2>
<p>It was ironic to see the GOP adopt the role of champion for the rights of people with psychiatric disabilities in the gun control debate (at least surrounding this rule). For the past several years, many in the Republican Party have deliberately demonized this group to shift the conversation away from sensible firearms restrictions.</p>

<p>Shortly after the Newtown massacre, the same NRA that collaborated with the disability community in opposing the Social Security rule issued a bizarre and terrifying proposal for &ldquo;an active national database of the mentally ill,&rdquo; a far more expansive proposal than anything to come out of the Obama administration.</p>

<p>Subsequently, Republicans began consistently pointing to those with mental health diagnoses as the real cause of the nation&rsquo;s gun violence problem. Led by Rep. Tim Murphy (R-PA), <a href="http://nosmag.org/congressman-tim-murphy-resigns-neurodiversity-community-breathes-sigh-of-relief-murphy-bill/">who has since resigned</a>, they introduced legislation to strip people with psychiatric disabilities of HIPAA privacy protections, limit legal aid to the community, and dramatically expand coercive treatment.</p>

<p>Back then, congressional Democrats bravely stood up to Rep. Murphy&rsquo;s proposals, and the Republican leadership withdrew the worst of them. In 2016, a dramatically weakened version of the original Murphy bill passed Congress, with the most counterproductive provisions, like the HIPAA rollback, stripped back to mostly symbolic measures.</p>

<p>This advocacy was rooted in an understanding that people with mental disabilities should not lose their civil rights because of their diagnoses. In standing up to Rep. Murphy&rsquo;s proposals, Democrats showed they understood that mental illness was being used as a distraction, as a way for Republicans to avoid discussing opposition to politically popular proposals, such as a ban on assault rifles or high-capacity magazines.</p>

<p>Now, in the aftermath of Parkland, President Trump and other Republicans seem to once again be seeking to stigmatize people with disabilities rather than pursue common sense solutions around gun control for the general public.</p>

<p>People with disabilities deserve better than to be used as props in the country&rsquo;s ongoing &mdash; and so far stalemated &mdash; arguments over gun control. &nbsp;</p>

<p><em>Ari Ne&rsquo;eman is the CEO of&nbsp;</em><a href="http://mysupport.com/"><em><strong>MySupport.com</strong></em></a><em>, an online platform helping people with disabilities, seniors,&nbsp;and families to manage their in-home services. From 2006 to 2016 he served as&nbsp;president of the Autistic Self Advocacy Network, and from 2010 to 2015&nbsp;he&nbsp;was one of President Obama&rsquo;s appointees to the National Council on Disability. </em><a href="https://twitter.com/aneeman"><em>@aneeman</em></a></p>
<hr class="wp-block-separator" />
<p><a href="http://vox.com/the-big-idea">The Big Idea</a> is Vox&rsquo;s home for smart, often scholarly excursions into the most important issues and ideas in politics, science, and culture &mdash; typically written by outside contributors. If you have an idea for a piece, pitch us at <a href="mailto:thebigidea@vox.com">thebigidea@vox.com</a>.</p>
						]]>
									</content>
			
					</entry>
			<entry>
			
			<author>
				<name>Ari Ne&#039;eman</name>
			</author>
			
			<title type="html"><![CDATA[The GOP health care plan could force Americans with disabilities back into institutions]]></title>
			<link rel="alternate" type="text/html" href="https://www.vox.com/the-big-idea/2017/3/22/15026856/ahca-plan-medicaid-cut-hurts-disabled-institutions" />
			<id>https://www.vox.com/the-big-idea/2017/3/22/15026856/ahca-plan-medicaid-cut-hurts-disabled-institutions</id>
			<updated>2017-03-23T08:44:55-04:00</updated>
			<published>2017-03-23T08:44:52-04:00</published>
			<category scheme="https://www.vox.com" term="Health Care" /><category scheme="https://www.vox.com" term="Policy" /><category scheme="https://www.vox.com" term="Politics" /><category scheme="https://www.vox.com" term="The Big Idea" />
							<summary type="html"><![CDATA[Much of the back and forth over the House GOP&#8217;s proposed American Health Care Act has focused on the number of people likely to lose coverage because of the legislation. That&#8217;s understandable, given that the Congressional Budget Office predicts 24 million fewer people will be insured as a result of AHCA. Yet for millions of [&#8230;]]]></summary>
			
							<content type="html">
											<![CDATA[

						
<figure>

<img alt="" data-caption="Studies show that people with disabilities thrive when they live outside of group homes. | Education Images / Getty" data-portal-copyright="Education Images / Getty" data-has-syndication-rights="1" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/8205561/GettyImages_578019454.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" />
	<figcaption>
	Studies show that people with disabilities thrive when they live outside of group homes. | Education Images / Getty	</figcaption>
</figure>
<p>Much of the back and forth over the House GOP&rsquo;s proposed American Health Care Act has focused on the number of people likely to lose coverage because of the legislation. That&rsquo;s understandable, given that the Congressional Budget Office predicts 24 million fewer people will be insured as a result of AHCA. Yet for millions of people with disabilities receiving Medicaid-funded home care, the House legislation means something worse than loss of coverage: loss of freedom.</p>

<p>Many people with disabilities already had access to Medicaid prior to the Affordable Care Act, due to automatic Medicaid eligibility available for those receiving Supplemental Security Income, one of the two major programs that provide income to non-veterans with disabilities. For this population, the greatest threat AHCA poses comes in the form of Medicaid per capita caps, a major shift in the traditional state-federal partnership that has defined the Medicaid program for half a century. &nbsp;&nbsp;</p>

<p>For the past 50 years, the main goal of disability rights activists has been to help people with disabilities transition out of institutional settings and into their own homes and communities. To accomplish this, advocates and policymakers have worked to establish an extensive system of support services for seniors, non-elderly adults, and children with disabilities; rather than pushing people into segregated settings, the support now comes to them, in their homes.</p>

<p><a href="https://risp.umn.edu/media/download/cms/media/risp/RISP2013_WEB.pdf">Between 1960 and 2013</a>, as a result of this effort, states closed 219 state institutions for people with intellectual and developmental disabilities. <a href="http://www.ncd.gov/rawmedia_repository/HCBS%20Report_FINAL.pdf">Whereas in 1977</a> the average person with a developmental disability lived in a place that housed 22.5 people, by 2011 that number had dropped to 2.3, reflecting a vast shift toward integration and personalization of services. All this progress has taken place under the umbrella of the Medicaid program, the primary payer for both institutional and community-based care &mdash; with a nudge from the Americans With Disabilities Act. Today, <a href="http://kff.org/medicaid/report/medicaid-home-and-community-based-services-programs-2013-data-update/">approximately 3 million</a> people with disabilities receive home- and community-based services from Medicaid.</p>

<p>But now, progress on deinstitutionalization, and support for disabled Americans in general, is at profound risk under the AHCA&rsquo;s Medicaid cuts, which the CBO calculates will total $880 billion over 10 years. (Earlier today, a group of disability rights activists were arrested in the Capitol Rotunda <a href="https://twitter.com/GreggBeratan/status/844612477962915840">while protesting</a> that per capita caps would cut the services that keep them and other disabled people out of nursing homes and institutions.)</p>

<p>Under current law, each state receives a federal match that covers a set percentage of the state&rsquo;s Medicaid costs, a figure calculated based on the state&rsquo;s poverty levels relative to the rest of the country. This means that states are reimbursed based on their actual Medicaid costs, which allows them to experiment by investing in new types of services or respond quickly to changing demographics or public health emergencies.</p>

<p>Under AHCA&rsquo;s per capita cap proposal &mdash; <a href="http://www.vox.com/policy-and-politics/2017/3/10/14847218/medicaid-ahca-republican-obamacare-replacement">explained in more detail</a> by Vox&rsquo;s Dylan Matthews &mdash; states would have federal funding limited to a certain level, calculated by the number of people a state has enrolled from each of Medicaid&rsquo;s five population groups: seniors, people with disabilities, children, adults enrolled via Medicaid expansion, and adults enrolled through other policies. AHCA assigns each of these groups a state-by-state &ldquo;cap&rdquo; &mdash; determined by each state&rsquo;s historical funding patterns as of 2016.</p>

<p>The AHCA funding formula then determines a total cap on state federal funding &mdash; one that can only grow with medical inflation. Under per capita caps, states could no longer receive additional federal funds to support a sudden emergency, unmet need, or increase in the cost of care. And since the index of medical inflation used by AHCA grows slower than projected actual Medicaid cost growth, every year states would receive a cut relative to the funding they would be eligible for under current law.</p>
<h2 class="wp-block-heading">People with disabilities do better getting services at home — but Medicaid is biased in favor of institutions. As a result, home care is vulnerable to Medicaid cuts.</h2><img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/8205575/Ari.chart1.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" alt="Medicaid Home and Community Based Services as a Percentage of Total Medicaid Long Term Service and Support, FY 1995 to 2014" title="Medicaid Home and Community Based Services as a Percentage of Total Medicaid Long Term Service and Support, FY 1995 to 2014" data-has-syndication-rights="1" data-caption="Medicaid home- and community-based services as a percentage of total Medicaid long-term service and support, FY 1995 to 2014. | Centers for Medicare and Medicaid Services" data-portal-copyright="Centers for Medicare and Medicaid Services" />
<p>While seniors and people with disabilities represent a minority of Medicaid enrollees, they make up the majority of Medicaid costs;&nbsp;<a href="https://www.medicaid.gov/medicaid/ltss/downloads/ltss-expenditures-2014.pdf">about a third of Medicaid expenditures</a> go toward disability and aging services.</p>

<p>For Americans with disabilities, the ability to live outside of a nursing home or institution is not just a distinction between two somewhat different kinds of service: It&rsquo;s a civil rights issue. Institutional life is often regimented, tightly controlled, and very limiting. People living in an institution may be denied basic choices, including when to go to sleep, what to eat, and whom they may talk to (and when).</p>
<img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/8205611/Ari.chart2.png?quality=90&#038;strip=all&#038;crop=0,0,100,100" alt="" title="" data-has-syndication-rights="1" data-caption="" data-portal-copyright="&lt;a href=&quot;http://www.nationalcoreindicators.org/&quot;&gt;National Core Indicators Project&lt;/a&gt;" />
<p>It is not only rights that suffer in institutions &mdash; life skills deteriorate, too. Evidence suggests that exit into the community can actually improve the functional skills of many people with disabilities. The <a href="https://www.aucd.org/docs/councils/core/Evidence-Based%20Policy%20Brief_1.pdf">research shows</a> that in domains like self-care, &ldquo;community living skills,&rdquo; communications, and social interaction, people have better outcomes after leaving institutions. In part due to these findings, the Supreme Court ruled in its 1999 <em>Olmstead v. L.C. </em>decision that the Americans With Disabilities Act required state Medicaid programs to offer community-based options as an alternative to anyone who wished to take advantage of them.</p>
<img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/8206071/Chart3.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" alt="" title="" data-has-syndication-rights="1" data-caption="Outcomes of studies of change in social, communication, self-care/domestic, and community living skills of persons with developmental disabilities moving from institution to community." data-portal-copyright="" />
<p>The decision was a landmark for the disabilities rights movement, but the rights it granted were not absolute: The decision of whether someone receiving state aid got the chance to live in the broader community had to be weighed &ldquo;in view of the resources available to the state,&rdquo; as the Court put it. (On average, and in the specific cases of the two women who inspired the <em>Olmstead </em>suit, it was actually less expensive to provide community-based services &mdash; although that is not always the case.) Thus, a significant loss of federal Medicaid funds would lead to a reduction in access to in-home supports.</p>

<p>Were a state to be sued under <em>Olmstead </em>for keeping disabled citizens in institutions, it might find it much easier, in a post-AHCA world, to make the case that doing so was a financial necessity, given the Medicaid cuts.</p>

<p>Unfortunately, while Medicaid can pay for in-home care, the program is in many ways still biased toward institutional settings. That&rsquo;s because nursing homes and other institutional settings are treated as entitlements in state Medicaid programs; anyone who qualifies must get in, somewhere. In contrast, states can cap enrollment for in-home supports, and run waiting lists. (It can take years to get off a waiting list and access community-based supports.) As of fiscal year 2015, there were 640,841 people waiting for home- and community-based supports, most of whom are people with intellectual and developmental disabilities.</p>

<p>Since institutional coverage is mandatory while community-based support is dependent on availability of state dollars, any cuts made to Medicaid fall disproportionately on in-home care. Those $880 billion in Medicaid cuts put such services at profound risk.</p>

<p>Republicans know this makes them politically vulnerable &mdash; and are trying to blame Obamacare for a problem they&rsquo;re making worse.</p>

<p>Republicans realize that this is one of their greatest political vulnerabilities in the health care discussion. Many who are perfectly content to kick low-income Americans off coverage resist the idea of taking services from children and adults with disabilities. <a href="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/8045717/Medicaid_Reform_Proposal_-_DRAFT_Executive_Summary_022417.0.pdf">Leaked documents</a> from the Republican Governors Association suggest that GOP governors fear cuts to this population too, recognizing the heavy cost burden that a loss of federal support will place on states. Since such services have no corollary in private insurance, officials can&rsquo;t pretend that those kicked out of Medicaid services will get them covered elsewhere &mdash; and with in-home care costing tens of thousands of dollars on average, paying out of pocket isn&rsquo;t an option.</p>
<h2 class="wp-block-heading">A bogus conservative claim: the Affordable Care Act’s Medicaid expansion came at the cost of people with disabilities</h2>
<p>Starting shortly after the election, some members of the conservative media broached a new and <a href="http://thefederalist.com/2016/11/18/obamacare-takes-care-disabled-people-subsidize-able-bodied-working-age-men/">particularly disingenuous line of attack</a> against the Affordable Care Act: They claimed that by incentivizing states to expand Medicaid for working-age adults, the law had diverted funds away from people with disabilities, making waiting lists for community care longer. This talking point was recently picked up by prominent House Republicans, including Majority Leader Kevin McCarthy, who <a href="https://www.majorityleader.gov/2017/03/08/medicaid-for-those-in-need/">published a blog post</a> about a child with a disability in Arkansas waiting for services.</p>

<p>But waiting lists long predate the ACA. What&rsquo;s more, <a href="http://kff.org/medicaid/issue-brief/data-note-data-do-not-support-relationship-medicaid-expansion-hcbs-waiver-waiting-lists/">most states</a> that have expanded Medicaid either have no waiting list or have reduced the size of their list since expansion. In contrast, the majority of non-expansion states have increased the size of their waiting lists &mdash; with almost half of those waiting for services in Texas and Florida, two non-expansion states. In fact, in 2014-&rsquo;15 the average increase in the waiting list for in-home care was more than 2.5 times greater in non-expansion states than in expansion ones. That&rsquo;s a predictable result, given that states that chose to expand were more likely to be more generous to begin with in funding their Medicaid programs.&nbsp;</p>
<img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/8205641/Chart4.png?quality=90&#038;strip=all&#038;crop=0,0,100,100" alt="" title="" data-has-syndication-rights="1" data-caption="" data-portal-copyright="" />
<p>Contrary to McCarthy&rsquo;s statement, Medicaid expansion hasn&rsquo;t made the waiting list problem worse. In fact, it has been of tremendous benefit for people with disabilities who can&rsquo;t get on Supplemental Security Income and can now access Medicaid solely based on their low-income status. This is a particularly big problem for autistic adults, people with psychiatric disabilities, and many individuals struggling with substance abuse disorders, all of whom often struggle to get on SSI. (For some, this is because they earn slightly too much money &mdash; at jobs that don&rsquo;t offer health benefits. For others, it&rsquo;s just too difficult to navigate the complex Social Security Administration bureaucracy.)</p>

<p>This is why &mdash; far from buying into the idea that Medicaid expansion is &ldquo;stealing&rdquo; money from those on waiting lists &mdash; disability advocates strongly oppose rolling back Medicaid expansion. A considerable percentage of those benefiting from Medicaid expansion <em>are</em> people with disabilities, making the accusations of &ldquo;theft&rdquo; from disabled people all the more odious.</p>

<p>As recently as Monday night, last-minute changes to the American Health Care Act attempted to alleviate concerns from states by slightly tweaking the growth rate for the caps the legislation imposes on costs from seniors and people with disabilities. This too is a recognition that the legislation&rsquo;s Medicaid cuts put disability and aging services at grave risk. Yet since the plan&rsquo;s cap on federal Medicaid funding applies to a state as a whole rather than any specific population within it, this change fails to address the problem.</p>

<p>AHCA&rsquo;s per capita cap system explicitly allows a state to apply cuts made to one population toward another; in other words, AHCA&rsquo;s tweak to the funding formula improves the growth in the state&rsquo;s Medicaid funding cap as a whole, with no guarantee that those services will actually serve disabled adults. And relative to current law, AHCA&rsquo;s Medicaid cuts are so sizable that they will still almost surely force states to make cutbacks in in-home care programs.</p>

<p>If Republicans wanted to fix the waiting list problem, they could simply change Medicaid law to require states to cover in-home care on an equal basis with institutionalization. They have declined to do so.</p>

<p>In fact, the House bill does more than make broad-based Medicaid cuts &mdash; it also eliminates, by 2020, a part of the ACA specifically designed to help states end waiting lists for community-based care: <a href="http://blog.aarp.org/2017/03/09/preserving-access-to-home-and-community-based-services-through-community-first-choice/">the Community First Choice State Plan Option</a>. That program gives states a 6 percent bump in federal matching dollars to pay for in-home attendants for disabled people &mdash; <em>if</em> the states eliminate their waiting lists. Eight states have taken that offer, including deep red states like Texas and Montana.</p>

<p>According to initial data on the first four states to roll out the program, the Community First Choice State Plan Option is already serving well over a half million people &mdash; yet the House bill being voted on this week sunsets funding for the program, cutting about $12 billion in funding for in-home care over the next decade.</p>

<p>The Community First Choice State Option was itself inserted into the Affordable Care Act as a compromise. It reflected the political reality that making in-home care a mandatory service under Medicaid law was not feasible at the time. I was one of the advocates who sat with the Obama administration&rsquo;s <a href="https://en.wikipedia.org/wiki/Nancy-Ann_DeParle">Nancy-Ann DeParle</a>, making the case for this provision as a second-best way to free thousands of people from institutional life. The willingness of AHCA&rsquo;s drafters to eliminate this program makes a mockery of the already ridiculous claims that they are &ldquo;saving&rdquo; people with disabilities from Obamacare.</p>

<p>After an election season in which disability had <a href="http://www.vox.com/2016/7/29/12320210/democratic-convention-disability-rights-hillary-clinton">more visibility than ever before</a>, lawmakers know that attacking this population makes no sense in either political or policy terms. Despite the empty Republican rhetoric about &ldquo;saving&rdquo; disabled people from Obamacare, the AHCA&rsquo;s Medicaid cuts put people with disabilities at profound risk, threatening to turn the clock back decades to a time when in-home care was rare. For people with disabilities, such a step back threatens lives &mdash; as well as the most basic of freedoms.</p>

<p><em>Ari Ne&rsquo;eman is the CEO of&nbsp;</em><a href="http://mysupport.com/"><em><strong>MySupport.com</strong></em></a><em>, an online platform helping people with disabilities, seniors, and families to manage their in-home services. From 2006 to 2016 he served as president of the Autistic Self Advocacy Network, and from 2010 to 2015 he was one of President Obama&rsquo;s appointees to the National Council on Disability. Find him on Twitter&nbsp;</em><a href="https://twitter.com/aneeman"><em><strong>@aneeman</strong></em></a><em><strong>.</strong></em></p>
<hr class="wp-block-separator" />
<p><a href="http://vox.com/the-big-idea">The Big Idea</a> is Vox&rsquo;s home for smart, often scholarly discussion of the most important issues and ideas in politics, science, and culture &mdash; typically written by outside contributors. If you have an idea for a piece, pitch us at <a href="mailto:thebigidea@vox.com">thebigidea@vox.com</a></p>
						]]>
									</content>
			
					</entry>
			<entry>
			
			<author>
				<name>Ari Ne&#039;eman</name>
			</author>
			
			<title type="html"><![CDATA[Is Betsy DeVos against enforcing disability rights laws — or does she not understand them?]]></title>
			<link rel="alternate" type="text/html" href="https://www.vox.com/the-big-idea/2017/1/19/14314890/devos-disabilities-rights-idea-hassan" />
			<id>https://www.vox.com/the-big-idea/2017/1/19/14314890/devos-disabilities-rights-idea-hassan</id>
			<updated>2017-02-13T15:00:51-05:00</updated>
			<published>2017-01-19T07:30:01-05:00</published>
			<category scheme="https://www.vox.com" term="Politics" /><category scheme="https://www.vox.com" term="The Big Idea" />
							<summary type="html"><![CDATA[For families with disabled children, few federal laws are as important as the Individuals With Disabilities Education Act, known as IDEA. It&#8217;s the law that grants children with disabilities the right to attend public school. It also mandates that schools provide them with the services necessary to achieve success in that setting &#8212; in the [&#8230;]]]></summary>
			
							<content type="html">
											<![CDATA[

						
<figure>

<img alt="" data-caption="Some of Betsy DeVos’s answers on disabilities-rights issues created controversy — in her confirmation hearing and outside it. | Chip Somodevilla / Getty" data-portal-copyright="Chip Somodevilla / Getty" data-has-syndication-rights="1" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/7831677/GettyImages_631922084.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" />
	<figcaption>
	Some of Betsy DeVos’s answers on disabilities-rights issues created controversy — in her confirmation hearing and outside it. | Chip Somodevilla / Getty	</figcaption>
</figure>
<p>For families with disabled children, few federal laws are as important as the Individuals With Disabilities Education Act, known as IDEA. It&rsquo;s the law that grants children with disabilities the right to attend public school. It also mandates that schools provide them with the services necessary to achieve success in that setting &mdash; in the same classrooms as non-disabled kids, whenever possible.</p>

<p>During Tuesday&rsquo;s confirmation hearing for Betsy DeVos, President-elect Donald Trump&rsquo;s nominee to run the US Department of Education, DeVos appeared to be unfamiliar with the law at the most basic level.</p>

<p>First, in <a href="https://www.washingtonpost.com/news/answer-sheet/wp/2017/01/17/betsy-devos-confused-about-federal-law-protecting-students-with-disabilities/">a series of responses</a> to questions from Sen. Tim Kaine (D-VA) on the rights of students with disabilities under IDEA, DeVos stated: &ldquo;That is a matter that is best left to the states.&rdquo; Then she went on to refer to a Florida program that encourages parents of children with disabilities to sign away their IDEA rights in exchange for a voucher for a private school.</p>

<p>Sen. Maggie Hassan (D-NH), who has a son with cerebral palsy, was unwilling to let the matter go. She returned to the issue, asking flatly whether DeVos knew&nbsp;that IDEA was federal law &mdash; and that states were bound by it. DeVos backtracked, stating that she &ldquo;may have confused&rdquo; the law with something else.</p>

<p>This left people with disabilities, family members, and educators confused as to whether DeVos was simply unaware that IDEA existed, or perhaps was not committed to enforcing the law in states and districts that don&rsquo;t comply with it. It is hard to say which prospect is more disconcerting. On Twitter, the disability community reacted harshly:</p>
<blockquote class="twitter-tweet" data-lang="en"><p lang="en" dir="ltr">DeVos literally didn&#8217;t know what IDEA was. How can an Education Secretary not know about disability rights in education?</p>&mdash; Jordan V. Allen (@jordanvalallen) <a href="https://twitter.com/jordanvalallen/status/821564236333809664">January 18, 2017</a></blockquote>
<blockquote class="twitter-tweet" data-lang="en"><p lang="en" dir="ltr">Smokescreen! Devos has to know about IDEA, like Sessions she just doesn&#8217;t support &nbsp;basic disability access laws. <a href="https://t.co/2haKahqkIA">https://t.co/2haKahqkIA</a></p>&mdash; Maig Bergio (@nut_maig) <a href="https://twitter.com/nut_maig/status/821742837159100417">January 18, 2017</a></blockquote>
<h2 class="wp-block-heading">Essential background for understanding the ire of the disabilities community</h2>
<p>Prior to the 1975 passage of the law that would evolve into IDEA (the Education for All Handicapped Children Act), <a href="https://www2.ed.gov/policy/speced/leg/idea/history.html">only one in five students with disabilities received a public education</a>. Many states actually had laws on the books explicitly excluding students with certain disabilities from enrolling in their school systems.</p>

<p>This began to change with a series of federal court cases in the early 1970s &mdash; most notably <em>PARC </em>v.<em> Pennsylvania</em> and <em>Mills</em> v.<em> District of Columbia</em> &mdash; that ruled that students with disabilities had a constitutional right to receive a public education. The court rulings prompted Congress to intervene in order to establish a federal framework for codifying and enforcing these rights; those efforts led to IDEA.</p>

<p>The law gives such students two key rights: a) the right to a &ldquo;free and appropriate public education,&rdquo; and b) the right that this education should take place in the &ldquo;least restrictive environment&rdquo; possible. The first provision means that students with disabilities are guaranteed access to a public education and that schools must provide necessary accommodations, services, and auxiliary supports. The second means that schools must provide that education and any accompanying services in the same classroom in which non-disabled students learn whenever possible. When that&rsquo;s not possible, segregated settings should be resorted to only to the minimum degree required by the student&rsquo;s disability.</p>

<p>To facilitate these rights, students receive an Individualized Education Program (IEP), a legal document that lays out how public education will be tailored to their needs. Once a year, families, students, school officials, and experts gather around a table to update the IEP and determine the child&rsquo;s needs for the coming school year. The IEP lays out the accommodations a student may get in the classroom, and any additional related services the school will pay for, such as occupational therapy or speech pathology services. The IEP can even be used to pay for certain kinds of private school education &mdash; in the event the family requests it and the IEP team determines that it is the most appropriate placement for the child. Receipt of an IEP also comes with other educational rights, including protections against long-term suspension as a result of disability-related behavior.</p>

<p>For students with disabilities and their families, IDEA is the bread and butter of their educational careers. Without it, students with disabilities might not have the right to even attend public school, much less get the services necessary to make that a meaningful experience. Most people with disabilities born within the past four decades recall receiving an IEP during their own time in school. I recall the IEP process very vividly myself, and how important it was to making sure I had a chance to receive the same opportunities as students without disabilities.</p>

<p>As of 2014, <a href="https://eddataexpress.ed.gov/data-element-explorer.cfm/tab/data/deid/5/">13 percent of students in US public schools had an IEP</a> &mdash; though the number varies by state. Massachusetts offers an IEP to 17.5 percent of its youth with disabilities, while Texas &mdash; notorious for being poor at identifying and serving Hispanic students with disabilities &mdash; offers an IEP to only 8.6 percent of its students.</p>

<p>Outcomes also vary significantly within states, with some districts and individual schools manifesting abysmal educational achievement for students with disabilities and high rates of segregation. These kinds of inequities across states are a significant concern to disability rights advocates &mdash; and part of why the prospect of a Secretary of Education who does not seem committed to enforcing civil rights law for students with disabilities is so disturbing.</p>
<h2 class="wp-block-heading">Conservatives use students with disabilities to push voucher programs</h2>
<p>There is a further unsettling subtext to DeVos&rsquo;s comments about IDEA.</p>

<p>Earlier in the hearing, Sen. Lamar Alexander (R-TN) had referred to legislation he had introduced &mdash; it failed to pass &mdash; enabling states to turn Title I federal education aid for low-income schools into private-school vouchers. Alexander noted that after its failure, Sen. Tim Scott (R-SC) introduced similar legislation, also voted down, <em>to do the same for federal IDEA funding</em>.</p>

<p>This trajectory is a not-unfamiliar one. In many states where school voucher programs have been met with skepticism, proponents have sought to use vouchers targeted specifically to students with disabilities as a starting point to open the conversation about the merits of using public money for private education. As a result, Florida, Ohio, Georgia, Louisiana, Oklahoma, and Utah, among other states, all have special-education voucher programs. In most of these, parents who accept a voucher waive their rights under IDEA. They can use the money to send their children to a private school&nbsp;&mdash; assuming they can afford it &mdash; but they can no longer demand the rights and legal protections established by IDEA: free education in the least-segregated environment possible.</p>

<p>This is the backdrop to yesterday&rsquo;s exchange on IDEA rights: an ongoing conservative effort to use students with disabilities as the tip of the spear for promoting vouchers.</p>

<p>Advocates are concerned by these voucher programs, both because of the requirement that parents waive educational rights, and because of the lack of any sort of framework to hold private schools accountable for their treatment of disabled youth. Voucher students are not typically included in state assessments, and the schools that participate in special education voucher programs often lack accreditation requirements or curriculum standards. In one school participating in Florida&rsquo;s special education voucher program &mdash; the oldest in the country, briefly referenced by DeVos at the hearing &mdash; <a href="http://www.miaminewtimes.com/news/mckay-scholarship-program-sparks-a-cottage-industry-of-fraud-and-chaos-6381391">a local newspaper&rsquo;s investigation</a> found widespread use of corporal punishment. The school also offered a &ldquo;business management&rdquo; class that consisted of shaking cans on street corners for coins.</p>

<p>Given that most of the private schools accepting special education vouchers are designed specifically for disabled students, there is also a fear that the proliferation of these programs will cause students with disabilities to lose hard-earned progress in accessing the general education classroom. School districts that become used to the presumption that students with disabilities belong in special-education schools may no longer invest in supporting students with more complex needs in inclusive settings.</p>

<p>People with disabilities and their families fought long and hard to establish the educational rights reflected under IDEA. The prospect of an education secretary who does not recognize the importance of those rights &mdash; because of ignorance or ideology &mdash; is terrifying to them.</p>
<blockquote class="twitter-tweet" data-lang="en"><p lang="en" dir="ltr"><a href="https://twitter.com/hashtag/DeVos?src=hash">#DeVos</a> wants to privatize IDEA. This reduces protections &amp; rights for <a href="https://twitter.com/hashtag/speced?src=hash">#speced</a> students. <a href="https://twitter.com/hashtag/SpEd?src=hash">#SpEd</a> <a href="https://twitter.com/hashtag/disability?src=hash">#disability</a> <a href="https://twitter.com/hashtag/DumpDeVos?src=hash">#DumpDeVos</a> <a href="https://t.co/lezj0U6aOZ">https://t.co/lezj0U6aOZ</a></p>&mdash; Candace Burckhardt (@ateachingnomad) <a href="https://twitter.com/ateachingnomad/status/821522656910602240">January 18, 2017</a></blockquote>

<p>To some, this calls forth the memory of the Reagan administration&rsquo;s effort to roll back IDEA shortly after Reagan entered office &mdash; an attempt that was met with a massive response from tens of thousands of furious youth, parents, and advocates. If the Trump administration decides to pick a similar fight, expect disability rights advocates to show up in force to respond.</p>

<p><em>Ari Ne&rsquo;eman is the CEO of </em><a href="http://mysupport.com/"><em>MySupport.com</em></a><em>, an online platform helping people with disabilities, seniors, and families to manage their in-home services. From 2006 to 2016 he served as president of the Autistic Self Advocacy Network, and from 2010 to 2015 he was one of President Obama&rsquo;s appointees to the National Council on Disability.</em></p>
<hr class="wp-block-separator" />
<p><a href="http://vox.com/the-big-idea">The Big Idea</a> is Vox&rsquo;s home for smart, often scholarly excursions into the most important issues and ideas in politics, science, and culture &mdash; typically written by outside contributors. If you have an idea for a piece, pitch us at <a href="mailto:thebigidea@vox.com">thebigidea@vox.com</a></p>

<p><em>&nbsp;</em></p>
						]]>
									</content>
			
					</entry>
			<entry>
			
			<author>
				<name>Ari Ne&#039;eman</name>
			</author>
			
			<title type="html"><![CDATA[Safety versus autonomy: advocates for autistic children split over tracking devices]]></title>
			<link rel="alternate" type="text/html" href="https://www.vox.com/the-big-idea/2016/12/17/13993398/safety-autonomy-avonte-tracking-autism-wandering-schumer" />
			<id>https://www.vox.com/the-big-idea/2016/12/17/13993398/safety-autonomy-avonte-tracking-autism-wandering-schumer</id>
			<updated>2017-02-13T16:26:41-05:00</updated>
			<published>2016-12-17T11:10:01-05:00</published>
			<category scheme="https://www.vox.com" term="Politics" /><category scheme="https://www.vox.com" term="The Big Idea" />
							<summary type="html"><![CDATA[This month, Congress came very close to passing &#8220;Kevin and Avonte&#8217;s Law,&#8221; legislation that would have made available federal funding for tracking devices to help local agencies monitor the movements of children with developmental disabilities. Named after two autistic children who died after wandering away from supervised environments, the bill was a high priority of [&#8230;]]]></summary>
			
							<content type="html">
											<![CDATA[

						
<figure>

<img alt="" data-caption="The death of Avonte Oquendo, who wandered from a school in Queens, helped to inspire controversial legislation to pay for tracking devices for children with disabilities. | Spencer Platt / Getty" data-portal-copyright="Spencer Platt / Getty" data-has-syndication-rights="1" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/7663051/GettyImages_185492693.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" />
	<figcaption>
	The death of Avonte Oquendo, who wandered from a school in Queens, helped to inspire controversial legislation to pay for tracking devices for children with disabilities. | Spencer Platt / Getty	</figcaption>
</figure>
<p>This month, Congress <a href="https://www.disabilityscoop.com/2016/12/13/wandering-bill-falls-short/23127/">came very close to passing</a> &ldquo;Kevin and Avonte&rsquo;s Law,&rdquo; legislation that would have made available federal funding for tracking devices to help local agencies monitor the movements of children with developmental disabilities. Named after two autistic children who died after wandering away from supervised environments, the bill was a high priority of a number of parent advocacy groups &ndash; and a source of deep concern to other groups, including the self-advocate community of people with disabilities.</p>

<p>A version of Kevin and Avonte&rsquo;s Law passed the Senate in July, incorporating carefully crafted language developed by the bill&rsquo;s primary sponsor, Senator Chuck Schumer (D-NY), designed to address or at least mitigate concerns from self-advocates. The Senate language restricted the acceptable scope of tracking device use to cases that would reduce the risk of injury or death to the person tracked. It also provided funding for safety issues other than tracking devices, like training first responders and educators on the needs of people with disabilities, and training law enforcement to help them spot signs of abuse<strong>.&nbsp;</strong></p>

<p>Unfortunately, when the House passed the legislation on December 8, several modifications were made, including allowing the use of tracking devices for purposes other than locating missing persons &mdash; tracking people to prevent them from harming others, for instance. The House also wanted to pay for the program by defunding an important community-policing grants program not directly related to disability. This caused my organization, the Autistic Self Advocacy Network, previously neutral on the legislation, to switch to active opposition &mdash; and also inspired several other major disability groups to pull their support.</p>

<p>Competing call-in campaigns to the Senate ensued through late last Friday, with proponents calling for a floor vote before the Senate adjourned for the session and critics urged Senator Schumer to reject the House changes. In the end, no vote on the bill took place, so proponents must start the process again in the new Congress.&nbsp;</p>

<p>For many who had been willing to endorse the legislation or at least remain quietly neutral when tracking devices were explicitly limited to locating missing children, the addition of language that allowed tracking for other purposes was a bridge too far. People with developmental disabilities are often unfairly perceived as dangerous to their communities, even if they have no history of violent behavior. Allowing tracking devices &mdash; which can include locking bracelets and anklets &mdash; to be applied for purposes other than locating missing persons seemed to many critics to open up the floodgates for their use in ways that would inappropriately limit the autonomy of disabled Americans.</p>
<h2 class="wp-block-heading">Roughly speaking, the debate splits autism-parents groups and self-advocates</h2>
<p>Over the last decade, a growing split has emerged in the autism world. Some families argue passionately that safety concerns justify applying far more restrictive measures to their children than are common in other disability groups. On the other hand, people with disabilities themselves, and other groups of family members, tend to be more concerned that such an approach will lead to greater isolation and risk for abuse. They don&rsquo;t dismiss the safety concerns, but they prefer to see other tools used to address them.</p>

<p>The disputes now playing out over &ldquo;wandering&rdquo; behaviors aren&rsquo;t new: In 2011, <a href="http://autisticadvocacy.org/2011/03/faq-on-proposed-icd-9-cm-wandering-code/">disability rights organizations</a> clashed with <a href="http://www.news-medical.net/news/20110318/NAA-expresses-strong-support-of-diagnostic-code-for-seniors-w">autism parent groups</a> over a proposal to establish wandering as an official diagnosis in the major coding system used by medical providers in the United States. Despite the opposition, the coding was eventually incorporated.</p>
<figure class="wp-block-pullquote alignleft"><blockquote><p>To borrow from Tolkien, “Not all those who wander are lost.”</p></blockquote></figure>
<p><a href="%22">That debate</a> followed the same parameters as this one, with proponents expressing concern about safety and opponents worrying about the potential for abuse and loss of autonomy. The challenge is that autistic people and others with disabilities &ldquo;wander&rdquo; for all sorts of reasons. Some of this wandering can be dangerous, especially for children. But an overly medical approach to wandering risks placing inappropriate limits on the ability of disabled adolescents and adults to explore the broader community, potentially contributing to harmful isolation.</p>

<p>This week, the Centers for Medicare and Medicaid Services <a href="https://www.medicaid.gov/federal-policy-guidance/downloads/faq121516.pdf">issued guidance to state policymakers and service-providers</a> on how best to deal with wandering and &ldquo;elopement.&rdquo; In it, federal policymakers described the the dilemma well:&nbsp;</p>
<blockquote class="wp-block-quote has-text-align-none is-layout-flow wp-block-quote-is-layout-flow">
<p>Wandering occurs in ways that may appear aimless but often have purpose. People may wander simply because they want to move. Sometimes wandering responds to an unmet basic need like human contact, hunger, or thirst; a noisy or confusing environment; or because people are experiencing some type of distress, like pain or the need to use the toilet. Wandering can be helpful or dangerous, depending on the situation. Although people who wander may gain social contact, exercise, and stimulation, they can also become lost or exhausted.</p>
</blockquote>
<p>Proponents of tracking devices often point to <a href="http://pediatrics.aappublications.org/content/130/5/870">a study from 2012</a> indicating that almost half of all autistic children engage in some form of wandering and elopement behavior.</p>
<h2 class="wp-block-heading">It’s important to understand the mindsets of disabled people who “wander”</h2>
<p>Interestingly, the same study asked families as to the reasons why their child eloped. The most commonly cited included &ldquo;simply enjoys running and/or exploring&rdquo; (53 percent), &ldquo;tries to reach a place he or she enjoys&rdquo; (36 percent), &ldquo;tries to escape an anxious situation&rdquo; (34 percent), &ldquo;tries to escape uncomfortable sensory stimuli&rdquo; (30 percent), and &ldquo;pursues his or her special topic&rdquo; (30 percent). In describing their child&rsquo;s mental state when wandering off, the top five parental responses were &ldquo;focused, with intent to go somewhere or do something&rdquo; (50 percent), &ldquo;content or happy&rdquo; (37 percent), &ldquo;playful&rdquo; (30 percent), &ldquo;exhilarated&rdquo; (27 percent), and &ldquo;anxious&rdquo; (17 percent).</p>

<p>While parents were offered &ldquo;seems to elope completely at random&rdquo; as a choice, it failed to make the top five. This suggests what autistic adults have been saying for some time &ndash; that wandering is typically a purposeful response to an autistic child&rsquo;s environment, not a discrete medical symptom. To borrow from Tolkien, &ldquo;Not all those who wander are lost.&rdquo;</p>

<p>To be sure, some <em>are </em>lost. Yet there is no data showing that trackers are effective at preventing injury or death for people who wander. People who have poor traffic safety skills or who can&#8217;t swim can easily die within minutes after they go missing, long before a device could be activated.</p>

<p>Viewing wandering as a purposeful behavior suggests that safety concerns may be better addressed by offering additional support to families, so that children can develop skills that enable them to more easily access the broader community &ndash; or support that periodically relieves parents of sole responsibility for supervision.</p>

<p>It is also important to invest in communication supports so that autistic children can make their needs known more easily, as well as to provide additional training on safety skills. These might include accessible swimming lessons, or how to navigate a community on public transportation.&nbsp;</p>

<p>To view wandering as a medical symptom makes it less likely that service-providers will work to understand the intent behind it &mdash; or that law enforcement will look for signs of abuse prior to returning a person to the home they endeavored to &ldquo;elope&rdquo; from.</p>

<p>We know that children and adults with developmental disabilities face many very real safety concerns &ndash; but one of them is <a href="http://www.mass.gov/dppc/abuse-recognize/pr">physical and sexual abuse</a> from family members and service-providers. These concerns deserve the same scrutiny and concerted response as parental concerns about traffic injuries or drowning during wandering episodes.&nbsp;</p>

<p>It is in some ways ironic that Congress would take up this legislation at a time when proposals to <a href="http://www.vox.com/policy-and-politics/2016/11/29/13778622/price-trump-medicaid-block-grants">dramatically slash Medicaid funding</a> are putting at risk the support services and training that provide a practical solution to some of these problems. Medicaid funding is the primary financing mechanism for disability support services, including the funding of support staff that can help children and adults with significant behavioral challenges avoid danger while navigating their communities. In some states, Medicaid has paid for remote monitoring technology distinct from tracking devices &ndash; including sensors that detect if a door has been opened during the night (and wake a family member).&nbsp;</p>

<p>There&rsquo;s also a question of priorities. Should autism advocates be investing so much time in trying to establish a $2 million grant program, <a href="http://www.cbpp.org/research/health/medicaid-block-grant-would-slash-federal-funding-shift-costs-to-states-and-leave">when hundreds of billions of dollars in Medicaid funding</a> may be at risk?&nbsp;</p>
<h2 class="wp-block-heading">The House bill would have taken money from one marginalized group to (arguably) help another</h2>
<p>Furthermore, the last-minute House modification to pay for tracking devices by defunding the Byrne Criminal Justice Innovation Program, which supports collaborative efforts between low-income neighborhood leaders and law enforcement to address crime hot spots, is particularly wrongheaded. It seems ill-advised to take money from one marginalized community in order to support another. But these community-policing grants also stand to benefit people with disabilities, including people of color and those from low-income backgrounds. Research shows that people with disabilities are disproportionately likely to be victims of police brutality and shootings. &nbsp;</p>

<p>The Autistic Self Advocacy Network maintained neutrality on this legislation till the last-minute changes in the House. In the new Congress, we and other disability rights groups will be closely scrutinizing the language used upon re-introduction.</p>

<p>If the original Senate language limiting the scope of tracking device use is restored, the bill may have a window to move forward. If not, it&rsquo;s likely that this will be one more area in which conflicting priorities among different groups advocating for autistic citizens mean a lack of progress. In managing the careful balance between parental fears about safety and self-advocates&rsquo; concerns about abuse and loss of autonomy, even the slightest tweak in legislative language can tip the scales.</p>

<p><em>Ari Ne&rsquo;eman is the president and co-founder of the Autism Self-Advocacy Network, and a former member of the National Council on Disability. Follow him on Twitter: </em><a href="https://twitter.com/aneeman?lang=en"><em>@aneeman</em></a></p>
<hr class="wp-block-separator" /><p id="06Wofr"><a href="vox.com/the-big-idea">The Big Idea</a> is Vox&rsquo;s home for smart, often scholarly excursions into the most important issues and ideas in politics, science, and culture &mdash; typically written by outside contributors. If you have an idea for a piece, pitch us at <strong><a href="mailto:thebigidea@vox.com">thebigidea@vox.com</a></strong>.</p>
						]]>
									</content>
			
					</entry>
			<entry>
			
			<author>
				<name>Ari Ne&#039;eman</name>
			</author>
			
			<title type="html"><![CDATA[I’m a disabled American. Trump’s policies will be a disaster for people like me.]]></title>
			<link rel="alternate" type="text/html" href="https://www.vox.com/first-person/2016/11/9/13576712/trump-disability-policy-affordable-care-act" />
			<id>https://www.vox.com/first-person/2016/11/9/13576712/trump-disability-policy-affordable-care-act</id>
			<updated>2016-11-09T15:40:07-05:00</updated>
			<published>2016-11-09T15:40:03-05:00</published>
			<category scheme="https://www.vox.com" term="2016 Presidential Election" /><category scheme="https://www.vox.com" term="Donald Trump" /><category scheme="https://www.vox.com" term="Politics" />
							<summary type="html"><![CDATA[It&#8217;s the early hours of Wednesday morning, and I&#8217;m watching my friends fear for their lives on Twitter. We&#8217;ve just learned that Donald J. Trump will be the next president of the United States. People are talking about the likelihood that they&#8217;ll lose health insurance when the Affordable Care Act is repealed, the fear that [&#8230;]]]></summary>
			
							<content type="html">
											<![CDATA[

						
<figure>

<img alt="" data-caption="" data-portal-copyright="Chip Somodevilla/Getty Images" data-has-syndication-rights="1" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/7440193/GettyImages_621864944.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" />
	<figcaption>
		</figcaption>
</figure>
<p>It&rsquo;s the early hours of Wednesday morning, and I&rsquo;m watching my friends fear for their lives on Twitter. We&rsquo;ve just learned that Donald J. Trump will be the next president of the United States. People are talking about the likelihood that they&rsquo;ll lose health insurance when the <a href="http://www.vox.com/presidential-election/2016/11/9/13572834/trump-obamacare-replacement-plan">Affordable Care Act is repealed</a>, the fear that the attendant who helps them get dressed in the morning will no longer be available when Medicaid is slashed, the possibility that their conversations with their therapist may no longer be private, the impossibility of paying out of pocket for the medications, in-home care, assistive technology, and other essential parts of disabled life. Like many other people with disabilities, we&rsquo;re terrified by the prospect of a Trump administration and what it may bring to people like us.</p>

<p>Much has been made over (now President-elect) Donald Trump&rsquo;s mocking of disabled New York Times reporter Serge Kovaleski last year. Spurred by the widespread outrage at Trump&rsquo;s cruelty, the Democratic National Committee made disability rights <a href="http://www.vox.com/2016/7/27/12299686/disability-rights-spotlight-democratic-convention">a high-profile theme of its 2016 convention</a>. But for most disability rights activists and disabled people I know, the choice to oppose Trump had relatively little to do with his mockery of Kovaleski &mdash; or his alleged <a href="https://mic.com/articles/156773/donald-trump-called-famous-deaf-actress-marlee-matlin-retarded-a-new-low-even-for-him#.0QQ6bD8ld">description of deaf actress Marlee Matlin as &ldquo;retarded,&rdquo;</a> or even his efforts to <a href="http://www.politico.com/magazine/gallery/2016/05/trumps-war-on-disabled-veteran-vendors-000637?slide=0">kick disabled veteran street vendors off public sidewalks near his buildings</a>. None of us were particularly thrilled by these things, mind you, but they didn&rsquo;t determine our votes.</p>

<p>What mattered &mdash; and matters &mdash; to us was policy. Hillary Clinton offered clear, specific, and timely policy proposals to expand the social safety net and civil rights of people with disabilities, while Trump made clear his intent to slash services and roll back legal protections. For the millions of Americans with disabilities who depend on Medicaid and the Affordable Care Act to access the health care and public services that mean basic survival, it is policy &mdash; not personal insult &mdash; that has brought terror and despair in the aftermath of last night&rsquo;s Trump victory.</p>

<p>It&rsquo;s hard to know what a Trump presidency will bring, given our new president-elect&rsquo;s penchant for playing fast and loose with the details of public policy. At no point during the election did Trump issue anything resembling the comprehensive white papers offered by the Clinton campaign on issues like autism, Alzheimer&rsquo;s, mental health policy, and other segments of the disability community.</p>

<p>Yet the Trump campaign did put forward a number of specific commitments relevant to disability, scattered throughout the candidate&rsquo;s statements and his health care policy platform. With the man now about to become the leader of the free world, it&rsquo;s worth looking at the impact Trump&rsquo;s policies would have on Americans with disabilities (should he follow through).</p>
<h2 class="wp-block-heading">Trump plans to slash the main source of federal financing for disability and aging services</h2>
<p>The vast majority of disability services are paid for by the Medicaid program, the state-federal partnership best known for its role in providing health care for low-income Americans. In 2014, <a href="https://www.medicaid.gov/medicaid/hcbs/index.html">Medicaid spent approximately</a> $151.8 billion on support services for seniors and people with disabilities &mdash; 53 percent of which was spent to keep those receiving support in their own homes rather than in nursing homes or institutions.</p>

<p>These services are a lifeline for people with disabilities, seniors, and their families. They can mean the difference between life or death &mdash; or the difference of a family member needing to quit her job to provide uncompensated care. Over the past 20 years, federal officials and advocates have worked together to promote community integration and in-home care for those receiving support, inspired by a 1999 Supreme Court decision that ruled that disabled Americans have a right to receive care outside of the segregated environments of nursing homes and institutions. To encourage states to expand in-home care, the federal government has offered carrots and sticks &mdash; from increases in the allotted federal match for state expenditures on such services to civil rights enforcement from the Department of Justice.</p>

<p>Unfortunately, Trump has proposed to block-grant Medicaid in <a href="https://www.donaldjtrump.com/positions/healthcare-reform">his health policy platform</a>. Such a measure would fundamentally change the nature of the program. Today, Medicaid matches each dollar spent by a state government with a dollar from the federal government &mdash; sometimes several times that, for states with higher percentages of low-income residents. Under a block-grant, states would simply receive a lump sum for Medicaid, with no additional funds should they expand their commitment and no real ability for advocates to use federal incentives to push for freeing seniors and people with disabilities from institutions and other segregated settings.&nbsp;</p>

<p>Block-granting Medicaid would also drastically reduce funding to the program over the coming decade. Assuming Trump intends to pursue a similar block-grant proposal to the one advanced by House Republicans this past year, block-granting would slash federal Medicaid funding by as much as $1 trillion between 2017 and 2026. By the 10-year mark, federal funding would stand at only two-thirds of its current level, <a href="http://www.cbpp.org/blog/medicaid-block-grant-would-add-millions-to-uninsured-and-underinsured">according to the Center on Budget and Policy Priorities</a>. Not only would this effectively doom the chances of the hundreds of thousands of disabled adults now on waiting lists for in-home supports, but it would likely result in considerable service cutbacks to those now receiving care.</p>

<p>It&rsquo;s frightening to think of how this could play out. Under the current system, Medicaid is an open-ended commitment &mdash; federal financing is guaranteed, and in exchange, states must provide care to all who are eligible. If block-granting proceeds, it would enable state officials to kick disabled adults and children out of life-preserving services for reasons of budget constraints, pressure from influential providers seeking to promote other business models, or any reason at all. Under a block grant, disabled Americans might effectively lack any rights to support services under federal law.</p>

<p>Block-granting has long been on the GOP&rsquo;s policy wish list. With Republican majorities in both chambers of Congress, this is one wish Trump finally has the power to deliver.&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;</p>
<h2 class="wp-block-heading">Trump plans to eliminate critical legal protections for disabled people in the health care system</h2>
<p>Of course, President Trump will be able to finally accomplish the Republican Party&rsquo;s most heartfelt desire: repealing (and hypothetically replacing) the Affordable Care Act. For the low-income Americans who depend on the ACA&rsquo;s insurance subsidies or Medicaid expansion for affordable coverage, this will be a disaster. For Americans with disabilities who depend on the law&rsquo;s end to preexisting condition discrimination, it will be an unprecedented loss of both health care and civil rights.</p>

<p>When the Americans With Disabilities Act passed in 1990, advocates were forced to compromise and continue to allow disability discrimination in one particular arena: health insurance. At the time, the economics of health insurance were such that ending &ldquo;medical underwriting&rdquo; &mdash; the practice of charging more or denying coverage based on a disability or other preexisting condition &mdash; would collapse the industry. It was only with the introduction of the Affordable Care Act and its individual mandate that eliminating disability discrimination in insurance became feasible. In that sense, the Affordable Care Act completed the nondiscrimination requirements of the Americans With Disabilities Act, more than two decades later.</p>

<p>With President Trump committed to eliminating the ACA and the individual mandate that allows for an end to preexisting condition discrimination, it seems inevitable that millions of disabled Americans will once again lack meaningful access to the private insurance market. As someone who had planned to get coverage from the ACA&rsquo;s marketplaces this coming year, the potential loss of these protections fills me with concern.</p>

<p>Trump has also shown signs of affinity with the growing movement among congressional Republicans to weaken the Health Insurance Portability and Accountability Act privacy rights of people with mental illness. His website&rsquo;s <a href="https://www.donaldjtrump.com/positions/healthcare-reform">health policy platform</a> references &ldquo;promising reforms&rdquo; to enable family members to access their relatives&rsquo; mental health records &mdash; a likely reference to Rep. Tim Murphy&rsquo;s (R-PA) ongoing efforts to weaken HIPAA privacy protections, expand forced treatment, and hog-tie legal aid organizations funded to serve people with psychiatric disabilities.</p>

<p>Motivated by a desire to show congressional action after high-profile mass shootings, a number of GOP politicians have supported legislation that would drastically limit the degree to which people with mental health conditions could limit private medical information flowing to family members. As with so many other areas, mental health policy under President Trump is likely to grow more coercive, with little to no concern for the rights of those most vulnerable.</p>
<h2 class="wp-block-heading">Trump may be about to set back federal autism policy by at least a decade</h2>
<p>Trump has not been shy about his support for the thoroughly discredited idea that autism is caused by vaccinations. As early as <a href="https://www.washingtonpost.com/news/morning-mix/wp/2015/09/17/the-gops-dangerous-debate-on-vaccines-and-autism/?tid=a_inl">the second GOP primary debate, Trump linked autism to vaccines</a>, going on to spout the long discredited idea that &ldquo;autism has become an epidemic. &hellip; Twenty-five years ago, 35 years ago, you look at the statistics, not even close. It has gotten totally out of control.&rdquo;</p>

<p>Of course, this is not true &mdash; not only has the autism-vaccine link been shown to be false, but a <a href="http://www.thedailybeast.com/articles/2015/05/05/more-autistic-people-or-more-diagnoses.html">growing body of scientific evidence</a> shows that autistic people have always existed in approximately the same proportion of the general population, rather than constituting a recent epidemic. But while Trump&rsquo;s comments on autism have little scientific legitimacy, they have tremendous political relevance.</p>

<p>Over the past 10 years, federal autism policy has witnessed a sea change. As autistic self-advocates (those of us who are autistic ourselves) began to play a bigger role in autism policymaking, discussion began on the need to shift from an overwhelming <a href="http://www.vox.com/2016/4/21/11464144/autism-funding-services-biology">emphasis on causation, biology, and cure</a> to promoting new investments in services, educational methodologies, and assistive technology.</p>

<p>Many policymakers took note of the objection from large segments of the autistic community to attempting to &ldquo;cure&rdquo; autism, hearing our preference to instead focus on improving the opportunity for autistic people to develop skills and lead successful lives as autistic adults. At the behest of advocates like me, Congress changed the nation&rsquo;s premier autism statute from the Combating Autism Act to the Autism CARES Act, denoting a shift toward a greater emphasis on services rather than trying to make autistic people look and act &ldquo;normal.&rdquo;</p>

<p>It&rsquo;s long been clear to autistic activists that Trump is aligned with the most reactionary forces in the autism community, who would prefer that none of these changes take place. He enjoyed endorsements relatively early in the cycle from <a href="http://www.ageofautism.com/2015/09/trumps-stands-with-my-son-i-stand-with-trump.html">prominent</a> <a href="http://www.autisminvestigated.com/ai-endorses-donald-trump/">anti-vaccine activists</a> who adamantly oppose recent shifts toward a more progressive autism policy. Bob Wright, the founder of the powerful and <a href="http://www.vox.com/2015/8/31/9233295/autism-rights-kanner-asperger">often reviled</a> Autism Speaks charity (who is known for <a href="https://leftbrainrightbrain.co.uk/2015/09/24/autism-speaks-founder-bob-wrights-opinion-is-more-important-than-science/">his own anti-vaccine leanings</a>), <a href="https://twitter.com/bobwrightnbc/status/722223562900299778">tweeted</a> his enthusiastic support in April. Now that Trump is poised to take the presidency, he will likely turn to these early allies to fill key roles in his administration relevant to autism and disability. The potential outcomes are frightening.</p>
<h2 class="wp-block-heading">Disability activists have faced down conservative attempts to roll back disability rights before — and won</h2>
<p>In 1981, the newly sworn-in Reagan administration came to Washington with the stated goal of eliminating pesky federal regulation &mdash; and new disability rights laws were squarely within its crosshairs. After <a href="http://staging.gibsondesign.com/weicker/people/doyle.html">a failed attempt to repeal the 1975 Education for All Handicapped Children Act</a> (which guaranteed children with disabilities the right to access public schools for the first time), the Reagan administration moved to weaken the law through regulation. A massive backlash ensued, led by the Disability Rights Education and Defense Fund&rsquo;s Pat Wright and the Disability Rights Center&rsquo;s Evan Kemp Jr. The ultimate result: <a href="http://web.archive.org/web/20131220065328/http:/isc.temple.edu/neighbor/ds/disabilityrightstimeline.htm">More than 40,000 cards and letters from disabled people and family members sent to the White House</a>. Shortly afterward, the Reagan administration backed off trying to change special education law. It would not try again.</p>

<p>Another effort by Reagan to remove people from the rolls of the Social Security Disability Insurance (SSDI) program was more successful &mdash; for a time. In 1981, the Reagan administration ordered a review of more than 1 million SSDI cases, <a href="http://articles.chicagotribune.com/1989-12-04/news/8903150162_1_average-monthly-benefit-disabled-rolls">prompted by concerns that the program had grown from a $3.1 billion to a $15.5 billion price tag between 1970 and 1980</a>. &nbsp;</p>

<p>Again, disability advocates mobilized en masse, with advocacy groups and friendly members of Congress publicizing suicides due to disabled people losing their benefits and calling attention to the relatively cavalier approach undertaken by the Reagan-era Social Security Administration (<a href="http://articles.chicagotribune.com/1989-12-04/news/8903150162_1_average-monthly-benefit-disabled-rolls">by 1987, 63 percent of the 315,910 removed from benefits were determined to be improperly denied and had their cash payment under the program restored</a>).</p>

<p>Subsequent class-action litigation won beneficiaries the right to appeal and reapply for benefits after a federal judge ruled that the government had inappropriately removed from benefits individuals who had no change in the severity of their disability. By 1983, <a href="http://www.raggededgemagazine.com/0302/0302ft5.html">advocates had successfully pushed through a law</a> ensuring that disabled beneficiaries could keep their benefits while appeals were underway &mdash; with Reagan pulling back on further efforts to purge the program and paying lip service to &ldquo;truly deserving&rdquo; disabled people.</p>

<p>Just as 1980s disability advocates successfully defeated Reagan&rsquo;s attempted rollback of federal disability programs, the current generation has the opportunity to do the same to President Trump.</p>
<h2 class="wp-block-heading">The Trump presidency will be a disaster — but even a disaster presents certain opportunities</h2>
<p>Still, I won&rsquo;t pretend that the aftermath of the 2016 election isn&rsquo;t leaving people with disabilities feeling like Charlie Brown trying to kick the football before Lucy pulls it out from under him. It&rsquo;s galling to face the prospect of President Trump in the same year that brought landmark advances in the <a href="http://www.nytimes.com/2016/09/22/us/politics/hillary-clinton-speech.html">visibility</a> <a href="http://www.vox.com/2016/7/29/12320210/democratic-convention-disability-rights-hillary-clinton">and priority placed on disability rights</a>. In the space of a few hours, we went from planning how to make sure President Clinton lives up to her campaign promises to planning a desperate fight to make sure President Trump does not live up to his.</p>

<p>And yet, as in all such things, there is opportunity in disaster. Our imminent Trump presidency is likely to be a calamity for a broad swath of Americans &mdash; and liberal and progressive activists will respond by seeking to attack Trump on every front available. For a disability rights movement that&rsquo;s often seen as the orphan stepchild of progressive advocacy, there&rsquo;s a chance to better integrate disability into the liberal pantheon of diversity, identity, and protected class. By better highlighting how disabled Americans will almost certainly suffer under Trump policies, disability activists can familiarize the advocates and policymakers who will form the nucleus of the next Democratic administration with our needs and our values.&nbsp;</p>

<p>Just like the George W. Bush administration&rsquo;s crusade against same-sex marriage helped to normalize the role of the LGBTQ movement under the civil rights umbrella (and within the Democratic Party&rsquo;s political coalition), it may very well be that disability rights activists will achieve greater solidarity from other progressive groups after four years of shared opposition to the outrages of President Trump. Compared with the potentially game-changing strides forward promised by the Clinton campaign, this is cold comfort &mdash; but it is something we can cling to as we prepare for the fights to come. With the lives of millions of Americans with disabilities at stake &mdash; as well as those of people of color, Jews, Muslims, low-income persons, LGBTQ Americans, and members of other marginalized groups &mdash; we need all the silver lining we can find. The next four years will be difficult ones.</p>

<p><em>Ari Ne&rsquo;eman is the president of the Autistic Self Advocacy Network and served as one of President Obama&rsquo;s appointees to the National Council on Disability from 2010 to 2015.</em></p>
<hr class="wp-block-separator" />
<p><a href="http://www.vox.com/first-person"><strong>First Person</strong></a>&nbsp;is Vox&#8217;s home for compelling, provocative narrative essays. Do you have a story to share? Read our&nbsp;<a href="http://www.vox.com/2015/6/12/8767221/vox-first-person-explained"><strong>submission guidelines</strong></a>, and pitch us at&nbsp;<a href="mailto:firstperson@vox.com"><strong>firstperson@vox.com</strong></a>.</p>
						]]>
									</content>
			
					</entry>
			<entry>
			
			<author>
				<name>Ari Ne&#039;eman</name>
			</author>
			
			<title type="html"><![CDATA[Disability rights took the spotlight at the Democratic convention this year]]></title>
			<link rel="alternate" type="text/html" href="https://www.vox.com/2016/7/27/12299686/disability-rights-spotlight-democratic-convention" />
			<id>https://www.vox.com/2016/7/27/12299686/disability-rights-spotlight-democratic-convention</id>
			<updated>2016-07-27T14:33:32-04:00</updated>
			<published>2016-07-27T16:00:03-04:00</published>
			<category scheme="https://www.vox.com" term="Politics" />
							<summary type="html"><![CDATA[People with disabilities are used to feeling like a second-class minority group. In American politics, when disability is mentioned at all, it&#8217;s too often in the context of trite inspiration porn or offensive and inaccurate myths about people faking problems to unfairly access public benefits. Rarely do disabled Americans hear meaningful discussion of the issues [&#8230;]]]></summary>
			
							<content type="html">
											<![CDATA[

						
<figure>

<img alt="" data-caption="Anastasia Somoza, a disability rights advocate, speaks on the first day of the Democratic National Convention. | Paul Morigi/Getty" data-portal-copyright="Paul Morigi/Getty" data-has-syndication-rights="1" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/6851905/Somoza.getty.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" />
	<figcaption>
	Anastasia Somoza, a disability rights advocate, speaks on the first day of the Democratic National Convention. | Paul Morigi/Getty	</figcaption>
</figure>
<p>People with disabilities are used to feeling like a second-class minority group. In American politics, when disability is mentioned at all, it&rsquo;s too often in the context of trite <a href="http://www.abc.net.au/news/2012-07-03/young-inspiration-porn/4107006">inspiration porn</a> or offensive and inaccurate myths about people faking problems to unfairly access public benefits. Rarely do disabled Americans hear meaningful discussion of the issues that impact our lives.</p>

<p>That&rsquo;s what makes this year&rsquo;s <a href="http://www.vox.com/2016/7/13/12174138/democratic-convention-dnc-2016-philadelphia">Democratic National Convention</a> so surprising. The first two nights of the convention included an unusual level of disability-rights content. Both evenings have included prominent remarks from disabled speakers with decades-long relationships with Democratic nominee Hillary Clinton.</p>

<p>Yesterday&#8217;s session took place during the 26th anniversary of the signing of the Americans with Disabilities Act. Former US Sen. Tom Harkin, one of the original co-sponsors of the ADA, spoke early in the day&rsquo;s schedule about that landmark event. He took the opportunity to teach the assembled delegates how to say America in sign language &mdash; then praised Hillary&rsquo;s support for ending an exemption that allowed companies to pay some disabled workers less than the minimum wage, and for passing legislation to promote community living supports.</p>

<p>Disability rights has long been a passionate cause of Sen. Harkin and a few other elected officials with a personal connection to the community. What&rsquo;s unusual about this year&rsquo;s convention was the degree to which disability has played a major role in the primetime symbolism used by the party to make their case to the American people.</p>

<p>Some of this may reflect a longstanding personal interest in the topic by the candidate. As Bill Clinton mentioned in his remarks last night, Hillary Clinton began her law career advocating for children with disabilities with the Children&rsquo;s Defense Fund before the passage of Public Law 94-132, which required public schools to accept children with disabilities. Her campaign has issued impressively detailed policy plans regarding <a href="https://www.hillaryclinton.com/briefing/factsheets/2016/01/05/hillary-clintons-plan-to-support-children-youth-and-adults-living-with-autism-and-their-families/">autism</a>, <a href="https://www.hillaryclinton.com/briefing/factsheets/2016/01/05/hillary-clintons-plan-to-support-children-youth-and-adults-living-with-autism-and-their-families/">substance abuse</a>, <a href="https://www.hillaryclinton.com/briefing/factsheets/2015/12/22/an-end-to-alzheimers-disease/">Alzheimer&rsquo;s</a>, and <a href="https://www.hillaryclinton.com/issues/fighting-hiv-and-aids/">HIV/AIDS</a>, among other topics.</p>

<p>But it also reflects some important changing dynamics in America&rsquo;s disability politics.</p>
<h2 class="wp-block-heading">The interests of people with disabilities themselves have rarely been the subject of American politics</h2>
<p>In previous election cycles, disability has been included mainly to tell a story designed to appeal to the non-disabled. Activists have long expressed frustration that disability &mdash; viewed within the community as a civil rights issue &mdash; has usually been presented as a source of human interest stories designed to evoke pity.</p>

<p>Christopher Reeve&rsquo;s <a href="http://www.americanrhetoric.com/speeches/christopherreeve1996dnc.htm">convention speech</a> is a notorious case. Writing in her memoir <a href="https://www.amazon.com/Too-Late-Die-Young-Nearly/dp/0312425716"><em>Too Late to Die Young</em></a>, Harriet McBryde-Johnson, a disabled attorney, author, and delegate at the 1996 Democratic convention, described her disappointment in the disabled actor&rsquo;s remarks, which were praised in the general press but <a href="http://dsq-sds.org/article/view/918/1093">panned</a> by most disability-rights commentators for casting disability as mainly an issue of medical research. McBryde-Johnson captured the disconnect:</p>
<blockquote class="wp-block-quote has-text-align-none is-layout-flow wp-block-quote-is-layout-flow">
<p>On the giant TV screen in the rafters, there&#8217;s a woman in a wheelchair with both arms crossed over her chest, scowling. Quick cut to a nondisabled white woman, tears streaming across a smiling face, backlit to highlight her moment of inspiration. The lights pick out a variety of delegates. White, black, old, young, male, female. Everything but crips &hellip;</p>

<p>&hellip; the speech ends and the lights come on. Emotion has run through the vast space, in one of those communal experiences that touches each individual and transforms the group as a whole. But as Reeve and the crowd have enjoyed their communion, I have been placed outside the circle. The force that has been let loose in the hall redefines me as it defines Reeve, as a disability object, presumably tragic but brave, someone to gawk at, someone to make them grateful that they are not like us.</p>
</blockquote>
<p>McBryde-Johnson&rsquo;s criticism reflects a longstanding aspiration among the disabled to be seen as a minority group on par with black and Latino voters, Jews and Muslims, and the LGBTQ community, rather than as a public health problem. Seen in that light, convention remarks like <a href="http://www.prnewswire.com/news-releases/remarks-as-prepared-for-delivery-by-thaddeus-desmond-anton-moore-dynah-haubert-kate-burdick-dustin-parsons-daniele-mellott-and-jelani-freeman-588324352.html">those of Dynah Haubert</a>, a disabled staff attorney at Disability Rights Pennsylvania, carry special resonance. Speaking among representatives of other minority groups on Monday, Haubert proclaimed that &#8220;disability is not a problem to be cured, but part of our identity and diversity.&#8221;</p>
<div id="QxGPMb" data-chorus-asset-id="6851941"> <img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/6851941/Christopher.Reeve..jpg"><div class="caption">Christopher Reeve&rsquo;s speech at the 1996 Democratic National Convention was not well received by disability-rights advocates</div> </div>
<p>In prior cycles, politicians rarely went beyond generic statements supporting greater awareness or increased funding of research. With such a low bar, there wasn&#8217;t much of a pathway for campaigns to distinguish themselves.</p>

<p>Now we&#8217;re seeing a willingness to get down to specific proposals, even <em>controversial</em> proposals. This is happening in both parties. Witness the GOP platform&rsquo;s call for including businesses owned by people with disabilities in the federal government&rsquo;s minority-owned business contract preference program.</p>

<p>Or witness the battle that&#8217;s played out in Congress this year between <a href="http://www.rollcall.com/news/home/house-tries-overcome-roadblocks-mental-health-reform">competing Democratic and Republican visions for mental health reform</a>. Democrats have by and large been arguing to protect the privacy rights of people with psychiatric disabilities under HIPAA and expand voluntary mental health supports; Republican leaders have argued for rolling back HIPAA and expanding more coercive court-ordered treatment models. Whatever side you&rsquo;re on, it&rsquo;s satisfying to see that the parties are finally starting to articulate exactly what they believe in when it comes to disability policy.</p>
<h2 class="wp-block-heading">The disability community has matured politically</h2>
<p>Americans with disabilities want to be recognized as an interest group worth pandering to &mdash; not as a source of inspiration or pity for the general public. Many believe that&rsquo;s finally happening this year.</p>

<p>Even during the primaries, candidates on both sides of the aisle had begun to make commitments. When Jeb Bush rolled out his campaign, he <a href="http://www.politifact.com/truth-o-meter/article/2013/apr/04/jeb-bushs-story-mom-who-inspired-him-help-disabled/">highlighted the work</a> he had done as governor to expand services to Floridians with developmental disabilities. John Kasich made <a href="http://therespectabilityreport.org/2015/12/23/kasich-fully-integrate-people-with-disabilities-in-employment/">similar remarks</a> on the campaign trail.</p>

<p>In the Democratic primary, Hillary Clinton made an early splash with a <a href="http://www.vox.com/2016/1/8/10733544/hillary-clinton-autism">detailed plan for policies relevant to autism</a>: It included commitments to expand funding for integrated employment opportunities as well as investments in services for autistic adults. Later, on the campaign trail, she responded to a question from an autistic lawyer in Wisconsin by committing to change federal labor law to extend minimum-wage protections <a href="http://www.vox.com/2016/3/31/11337758/clinton-disability-minimum-wage">to all disabled workers</a>. She went on to <a href="http://www.newmobility.com/2016/04/clinton-sanders-confirm-support-disability-integration-act/">endorse the Disability Integration Act</a>, legislation designed to create an enforceable right for community-based supports. In both instances, Sen. Sanders quickly followed suit.</p>

<p>Interestingly, both the Democratic and Republican party platforms call for eliminating sub-minimum wage compensation to disabled workers (somewhat ironically so for the GOP, given that the party doesn&rsquo;t support a federal minimum wage). And when an early draft of the Democratic platform was released without mention of the need for community-based services for the disabled, <a href="http://www.disabilityleadership.org/index.php?option=com_content&amp;view=article&amp;id=176&amp;Itemid=2">vocal lobbying by activists</a> convinced the party to include language <a href="https://www.demconvention.com/wp-content/uploads/2016/07/Democratic-Party-Platform-7.21.16-no-lines.pdf">addressing their concerns</a>.</p>
<h2 class="wp-block-heading">A large group that’s politically up for grabs — in theory</h2>
<p>Behind this growing interest is a fundamental political reality. Nearly one in five Americans <a href="https://www.census.gov/newsroom/releases/archives/miscellaneous/cb12-134.html">possess a disability of some kind</a>. While many are disconnected from disability politics, a substantial minority of disabled Americans and their family members consider disability issues a major factor in their voting decisions. (At the Democratic convention itself, <a href="http://www.philly.com/philly/news/politics/dnc/20160727_Disabled_finally_have_a_place_at_the_DNC.html">the number of disabled delegates is up 35 percent</a>, relative to the 2012 convention.)</p>

<p><a href="http://ucp.org/power-in-numbers/Disability%20Community%20Poll.pdf">Polling of the community</a> suggests disabled voters are distributed through both political parties at about the same rate as the general population. Meaning that they remain up for grabs for either party. Disability issues can meaningfully influence voting behavior. In a 2013 poll, 87 percent of voters with disabilities reported they would consider voting against a candidate they otherwise supported if that candidate favored cutting disability services. Forty-five percent indicated such a stance would <em>definitely</em> lose their vote.</p>
<h2 class="wp-block-heading">In 2016, the Democrats have an opportunity to dominate the disability vote — and they know it</h2>
<p>There&rsquo;s another reason why disability issues are getting greater representation at the convention. The Democratic Party in the 21st century has bet big on health care &mdash; if you want the federal government to play a role in expanding access and improving benefits, most of the policy proposals you&rsquo;ll like will be on one side of the aisle.</p>

<p>Post-ACA, the percentage of Americans without health insurance is rapidly dropping. When President Obama came into office, the critical issue highlighted by health reform proponents was the lack of affordable coverage for a population of mostly non-disabled adults. Now that the ACA has created a pathway to universal insurance coverage, focus is starting to shift to what that insurance will pay for &mdash; an issue that&rsquo;s most relevant for people with disabilities and those with chronic illness. At this point, if you want to do meaningful health policy, you have to focus on people with disabilities.</p>

<p>This isn&#8217;t only relevant for future policymaking. When the Americans with Disabilities Act was passed in 1990, political compromise necessitated excluding health insurance from its nondiscrimination protections. The passage of the Affordable Care Act finally changed that, ending discrimination against Americans with disabilities and other pre-existing conditions on the insurance market.</p>

<p>While Republicans have a significant disability policy record of their own (the ADA itself was signed by George H.W. Bush), their party&rsquo;s strenuous efforts to repeal the ACA and its ban on pre-existing-condition discrimination makes it difficult for them to reach out to the disability vote. As long as repealing the ACA remains a top priority for the GOP, the Democrats will have an easier case to make to Americans with disabilities. With that in mind, it&rsquo;s not so surprising that they&rsquo;ve chosen to boost the profile given to disability at this year&rsquo;s convention.</p>

<p><em>Ari Ne&rsquo;eman is the president and co-founder of the Autistic Self Advocacy Network, an advocacy organization run by and for autistic adults seeking to increase the representation of autistic people across society. He has also served on the National Council on Disability, a federal agency that advises Congress and the president on disability policy issues.</em></p>
						]]>
									</content>
			
					</entry>
			<entry>
			
			<author>
				<name>Ari Ne&#039;eman</name>
			</author>
			
			<title type="html"><![CDATA[Hillary Clinton wants to end the loophole that lets disabled workers earn less than minimum wage]]></title>
			<link rel="alternate" type="text/html" href="https://www.vox.com/2016/3/31/11337758/clinton-disability-minimum-wage" />
			<id>https://www.vox.com/2016/3/31/11337758/clinton-disability-minimum-wage</id>
			<updated>2016-03-31T11:25:36-04:00</updated>
			<published>2016-03-31T13:00:03-04:00</published>
			<category scheme="https://www.vox.com" term="2016 Presidential Election" /><category scheme="https://www.vox.com" term="Hillary Clinton" /><category scheme="https://www.vox.com" term="Politics" />
							<summary type="html"><![CDATA[This Monday, Hillary Clinton proposed something no major presidential candidate ever had before: paying all disabled workers the minimum wage. At a campaign event in Madison, Wisconsin, Clinton was asked by Nikki Vander Meulen, an autistic attorney, about her position on Section 14(c), a loophole in the federal minimum wage that allows employers to gain [&#8230;]]]></summary>
			
							<content type="html">
											<![CDATA[

						
<figure>

<img alt="" data-caption="" data-portal-copyright="Spencer Platt/Getty Images" data-has-syndication-rights="1" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/6269009/518213064.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" />
	<figcaption>
		</figcaption>
</figure>
<p>This Monday, Hillary Clinton proposed something no major presidential candidate ever had before: paying all disabled workers the minimum wage.</p>

<p>At a campaign event in Madison, Wisconsin, Clinton was asked by Nikki Vander Meulen, an autistic attorney, about her position on Section 14(c), a loophole in the federal minimum wage that allows employers to gain an exemption from the minimum for workers with disabilities. Most Americans don&rsquo;t even know this loophole exists, but it has been leaving disabled workers to toil in poverty for decades, and disability rights advocates like myself have made repeal a major priority for years.</p>

<p>Clinton pledged to close it:</p>
<blockquote class="wp-block-quote has-text-align-none is-layout-flow wp-block-quote-is-layout-flow">
<p>When it comes to jobs, we&#8217;ve got to figure out how we get the minimum wage up and include people with disabilities in the minimum wage. There should not be a tiered wage, and right now there is a tiered wage when it comes to facilities that do provide opportunities but not at a self-sufficient wage that enables people to gain a degree of independence as far as they can go. So I want us to take a hard look at raising the minimum wage and ending the tiered minimum wages, whether it&#8217;s for people with disabilities or the tipped wage. &hellip; When people talk about raising the minimum wage, they don&#8217;t always talk about the legal loopholes that we have in it and I want to get rid of those and I want to get rid of that for people with disabilities too.</p>
</blockquote><p><iframe width="560" height="315" src="https://www.youtube.com/embed/dvcPtKZo7yE?start=2850" frameborder="0"></iframe></p>
<p>Not every disabled person is subjected to this lower minimum wage. Only employers with special Section 14(c) certificates can underpay, and there are millions of disabled people in non-14(c) workplaces or not working. But the policy still has a major impact. Section 14(c) is currently responsible for the underpayment of 228,600 people at 2,820 employers across the country. By calling for its abolition, Clinton is bringing much-needed attention to a hole in the safety net that is long past due for a fix.</p>
<h2 class="wp-block-heading">The origins of the disabled worker exemption</h2>
<p>Section 14(c) dates back to the 1938 Fair Labor Standards Act, which first established a federal minimum wage. The original version included a provision allowing employers to pay less than the federal minimum wage to workers whose disability might impact their employment prospects. But there was still some minimum; it was just set as a percentage of the regular minimum wage.</p>

<p>Then in 1986, an amendment to Section 14(c) <a href="http://digitalcommons.ilr.cornell.edu/cgi/viewcontent.cgi?article=1211&amp;context=key_workplace">eliminated the minimum wage for applicable workers</a> altogether.</p>

<p>Effectively, employers with 14(c) certificates can pay workers whatever they want. In practice, they use one of two methods: &#8220;piece rates&#8221; or &#8220;time studies.&#8221; Under a piece rate system, an employee might be paid based on the number of units of a particular product they are able to produce or process. Under a time study, employers time a non-disabled worker performing work-related tasks, then compare the productivity of a worker with a disability to the time spent by a non-disabled worker performing similar tasks.</p>

<p>Both of these systems are designed primarily for manufacturing or production-line jobs, and often lead to somewhat arbitrary results in the more fluid, services-based economy we live in today.</p>

<p>While 14(c) was originally conceptualized as something that would be used by both private employers and nonprofit organizations alike, today the overwhelming majority of 14(c) certificate holders are nonprofit centers that predominantly or exclusively hire people with disabilities. These centers are typically referred to as &#8220;sheltered workshops,&#8221; and they usually receive funding through both contracts with industry and payments from state Medicaid agencies in order to provide employment services to their workers.</p>
<h2 class="wp-block-heading">The &quot;sheltered workshop&quot; model has failed</h2><div data-chorus-asset-id="6268985"> <img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/6268985/GettyImages-556631899.jpg"><div class="caption">Goodwill Industries relies heavily on sheltered workshops.</div> </div>
<p>Sheltered workshops don&rsquo;t work. As part of <a href="http://www.dphhs.mt.gov/Portals/85/dsd/documents/DDP/SELN/CMSEndorsedEmploymentDefs.pdf">the preconditions of receiving Medicaid funding</a>, they&rsquo;re nominally required to present their services as pre-employment training, preparing disabled workers for eventual jobs in the general workforce. But few workers ever make that transition. The Government Accountability Office <a href="http://www.gao.gov/new.items/d01886.pdf">has estimated that only about 5 percent of workers</a> leave sheltered workshops for employment in the community.</p>

<p>Furthermore, studies comparing workers with intellectual disabilities who pass through workshops on their way to competitive employment with similar workers who go straight to competitive employment have found that <a href="https://www.researchgate.net/publication/260781788_Does_being_in_sheltered_workshops_improve_the_employment_outcomes_of_supported_employees_with_intellectual_disabilities">time spent in a workshop is correlated with worse outcomes</a>, lower pay, and higher costs of service. This research <a href="https://www.researchgate.net/publication/51162985_Do_Sheltered_Workshops_Enhance_Employment_Outcomes_for_Adults_with_Autism_Spectrum_Disorder">has also been replicated for autistic workers</a>.</p>

<p>Then there&rsquo;s the underlying inequity of not giving workers with disabilities the same minimum wage protections as workers without. Many workers in sheltered workshops are deriving little to no economic benefit from their employment &mdash; for example, NBC News&#8217;s investigation of Goodwill Industries found that employees in their Pennsylvania sheltered workshops <a href="http://investigations.nbcnews.com/_news/2013/06/25/19062348-disabled-workers-paid-just-pennies-an-hour-and-its-legal">were being paid wages as low as 22, 38, and 41 cents an hour</a>.</p>

<p>Workshops can also serve to isolate people with disabilities from the general population. While community employment typically involves interaction with non-disabled co-workers and customers, employment in a workshop affords few opportunities for broader community interaction. In a world in which employment advancement and skills development is as likely to come from co-worker interactions as it is from formal training programs, isolating workers with disabilities in separate workplaces is particularly concerning.</p>

<p>The dual-role sheltered workshops serve, as both employer and service provider, also creates problems. It often leads to conflicts of interest, as a workshop has little interest in assisting its workers in negotiating for better pay or working conditions. The low rate of transition from workshop environments to the integrated workforce can be attributed in part to the desire of workshops to retain their most productive employees.</p>
<h2 class="wp-block-heading">Another strategy is possible</h2><div data-chorus-asset-id="6268935"> <img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/6268935/104306270.jpg"><div class="caption">Disability rights activists demonstrate in favor of community-based services in 2010.</div> </div>
<p>The good news is that sheltered workshops are on the way out. In the past year, both <a href="http://www.rootedinrights.org/new-hampshire-legislature-passes-bill-ending-subminimum-wages/">New Hampshire</a> and <a href="https://www.facebook.com/MDDDCouncil/photos/a.226667974026709.77169.225328214160685/1399181356775359/?type=3&amp;theater">Maryland</a> have passed laws phasing out the use of sub-minimum wage over the next several years.</p>

<p>Recently, the Department of Justice Civil Rights Division has begun to sign settlement agreements with states requiring them to shift funding away from workshops and into supports in integrated employment settings instead. These lawsuits typically rely on the 1999 Supreme Court decision <em>Olmstead v. L.C</em>., which found that the Americans with Disabilities Act requires states to offer services in the community instead of only in segregated environments.</p>

<p><em>Olmstead</em> has been used to great effect to get states to move people out of institutions and nursing homes and expand in-home support that keeps people in the neighborhoods and communities they grew up in. There&rsquo;s a growing body of evidence suggesting that the benefits of community employment may be similar to the benefits of community-based support services (as opposed to institutionalization).</p>

<p>In place of sheltered workshops, advocates and the federal government have been pushing states to adopt a model called supported employment. Supported employment brings services like job coaching and other employment supports to a worker employed in workplaces that also hire people without disabilities &mdash; a situation known as &#8220;community employment.&#8221;</p>

<p>Instead of determining where someone will work based on her diagnosis, supported employment systems enlist job coaches to help people with disabilities find jobs consistent with their skills and interests, exposing them to multiple potential workplaces. For people with severe disabilities, this is often followed by a process known as customized employment, where an employment support specialist will work with supervisors to craft a job description that matches the skills of the prospective employee to the businesses&#8217; needs.</p>

<p>When surveyed, the majority of disabled workers and a smaller majority of family members <a href="http://www.inclusionbc.org/sites/default/files/Research_paper_-_Integrated_Employment.pdf">report a preference for supported employment</a> over sheltered workshops. Despite that, progress has been slow, with <a href="http://www.statedata.info/sites/statedata.info/files/files/statedatabook_2015_F.pdf">only about a fifth of people with developmental disabilities</a> in the service system receiving supported employment services.</p>

<p>Vermont became the first state to eliminate sheltered workshops in 2003, and has since acquired a reputation for high levels of integration in its developmental disability services. Because of the Department of Justice&rsquo;s litigation, Rhode Island and Oregon have also been required to drastically increase their supported employment service funding and begin to shift people out of sheltered workshops and into community employment.</p>

<p>To realize the benefits of community employment (and in order to avoid having to do so under court order), other states are now following their lead. Massachusetts and New York, among others, have begun processes to phase out sheltered workshops over time while increasing supported employment services during that phase-out period.</p>

<p>This is a positive trend, but it comes with a number of real risks and anxieties and significant obstacles along the way. Many providers have lobbied aggressively against these moves, fearing that the loss of sheltered workshops and sub-minimum wage will threaten their well-established business models. While many family members are strong supporters of these changes, others oppose them and fear that the move toward integrated employment will leave people with the most significant disabilities behind. That makes maintaining momentum toward subsidized employment, and away from sheltered workshops, crucial.</p>

<p>Addressing these concerns requires careful policymaking. States<a href="https://www.communityinclusion.org/pdf/all_D3.pdf"> need to carefully set Medicaid payment rates to employment service providers</a> to make sure they&rsquo;re willing to serve those with the most complex needs. Families also need to be reassured that services will continue to their loved one with a disability &mdash; especially for the many parents who use sheltered workshop placement as a tool to give their child something to do during the day other than sit at home. Clear communication about the availability of supported employment services, <a href="http://arineeman.com/2015/09/26/sheltered-workshops-part-2/">along with inclusive day and respite opportunities for those who don&rsquo;t find work</a>, can help mitigate opposition to these changes.</p>
<h2 class="wp-block-heading">It’s a huge deal for a presidential candidate to speak on disability policy</h2><div data-chorus-asset-id="6268915"> <img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/6268915/517920626.jpg"><div class="caption">Clinton in Madison, Wisconsin.</div> </div>
<p>Historically, politicians have limited their forays into disability policy, usually not seeing the disability community as a sufficiently organized voting bloc to be worth making promises to. When they did so, it would usually be on the areas of greatest consensus between the different wings of the disability movement, like increased service funding across the board. Section 14(c) doesn&rsquo;t fall into that category. The sheltered workshop industry, led by groups like Goodwill Industries, are still quite vocal in their opposition to ending 14(c).</p>

<p>Hillary Clinton&rsquo;s remarks on sub-minimum wage are notable because she&rsquo;s taking a bold position on a topic that has a history of controversy. One implication is that the tide may be turning on 14(c) and sheltered workshops. As advocates gain ground, many provider associations have come to the table and begun working constructively on how to responsibly phase out sub-minimum wage and workshops, instead of trying to preserve the status quo.</p>

<p>And while Clinton is the first to specifically call for phasing out sub-minimum wage for people with disabilities, she isn&rsquo;t the first to call for moving away from sheltered workshops. In the GOP race, <a href="http://therespectabilityreport.org/2016/02/23/kasich-stand-up-for-developmentally-disabled/">John Kasich has talked on the campaign trail on the need to move away from workshops</a>, citing his work promoting that transition as governor of Ohio.</p>

<p>There may also be a bigger takeaway though. The willingness of politicians to speak out against sub-minimum wage implies that the progressive disability movement is growing stronger across the board. As <a href="http://www.vox.com/2016/1/8/10733544/hillary-clinton-autism">Vox&rsquo;s Dylan Matthews pointed out in his analysis of Clinton&rsquo;s autism plan</a>, many of the recommendations included within it are aligned with the lobbying goals of autistic adults and other more progressive stakeholders in the autism world, who have long been encouraging a focus on services, instead of the singular focus on cure and causation that&rsquo;s usually driven conversations around autism.</p>

<p>It&rsquo;s hard to imagine a politician in the 2008 or 2012 election cycle making these kinds of promises. As many have pointed out, both Clinton and Barack Obama were <a href="http://www.nydailynews.com/news/politics/obama-hillary-questioned-vaccines-2008-elections-article-1.2102004">much more focused on causation theories (including discredited ones)</a> in the 2008 Democratic primary. The evolution of political discourse on autism, sub-minimum wage, and other disability issues implies a broader shift in the balance of power in the disability community.</p>

<p>Clinton&rsquo;s remarks are promising for advocates like me who work to promote integrated employment &mdash; but they may also signal a realignment in disability politics, with progressive advocates having much greater influence than ever before. As Clinton&#8217;s questioner Vander Meulen &mdash; <a href="https://systemschangeconsulting.wordpress.com/2016/03/30/systems-change-mentoring/">who helped draft Wisconsin&rsquo;s law prohibiting the inappropriate use of restraint on schoolchildren</a> and maintains a private practice in Madison &mdash; explained, &#8220;Hillary Clinton&#8217;s answer to my question was exactly the answer I had hoped to hear. Any and all Presidential candidates need to understand that the issue of sub-minimum wage is not a political issue but a human rights issue.&#8221;</p>

<p><a href="http://arineeman.com/"><em>Ari Ne&rsquo;eman</em></a><em> is the president of the Autistic Self Advocacy Network and served as one of President Obama&rsquo;s appointees to the National Council on Disability from 2010 to 2015. He currently serves as a member of the Department of Labor Advisory Committee on Increasing Competitive Integrated Employment for Individuals With Disabilities.</em></p>
						]]>
									</content>
			
					</entry>
			<entry>
			
			<author>
				<name>Ari Ne&#039;eman</name>
			</author>
			
			<title type="html"><![CDATA[The errors — and revelations — in two major new books about autism]]></title>
			<link rel="alternate" type="text/html" href="https://www.vox.com/2016/1/21/10801846/autism-in-a-different-key" />
			<id>https://www.vox.com/2016/1/21/10801846/autism-in-a-different-key</id>
			<updated>2019-03-05T19:14:10-05:00</updated>
			<published>2016-01-21T09:00:01-05:00</published>
			<category scheme="https://www.vox.com" term="Science" />
							<summary type="html"><![CDATA[This week saw the publication of the second opus-length autism history from a major publisher in the past year. Just as the autism world was beginning to absorb the bombshell of Steve Silberman&#8217;s NeuroTribes, published in August, Caren Zucker and John Donvan released In a Different Key. As both an autistic person and someone who [&#8230;]]]></summary>
			
							<content type="html">
											<![CDATA[

						
<figure>

<img alt="" data-caption="" data-portal-copyright="" data-has-syndication-rights="1" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/15662704/161183077.0.1453324621.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" />
	<figcaption>
		</figcaption>
</figure>
<p>This week saw the publication of the second opus-length autism history from a major publisher in the past year. Just as the autism world was beginning to absorb the bombshell of Steve Silberman&rsquo;s <em>NeuroTribes</em>, published in August, Caren Zucker and John Donvan released <em>In a Different Key</em>. <strong> </strong></p>

<p>As both an autistic person and someone who spends his days working on autism and disability policy, I&rsquo;m fairly familiar with the history of autism (and am a minor character in each book). But both contain surprising new revelations.</p>
<h2 class="wp-block-heading">Two books, two approaches</h2><div class="align-right"><img data-chorus-asset-id="5920649" alt="neurotribes.0.jpg" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/5920649/neurotribes.0.jpg"></div>
<p>Silberman made his name as a reporter for Wired magazine. Something of a lifetime outsider, he moved to San Francisco in the late &rsquo;70s so that he could live &#8220;a gay life without fear.&#8221; In many occasions throughout his book, his experiences as a gay man support how he tells the story of the autistic community.</p>

<p>Perhaps more than any other non-autistic writer to date, he understands the unique frustrations so many autistic persons feel watching a core aspect of our lives presented to the public as a burden and public health risk. While there are obviously major differences between autism and LGBTQ issues &mdash; autism often encompasses more significant impairment, obviously &mdash; there are also real commonalities, which Silberman highlights. Both groups contend with public disputes over the essential nature of our conditions, whether they can be corrected by behavioral or biomedical approaches, and whether we should be considered reliable narrators of our own experiences.</p>
<figure class="wp-block-pullquote alignleft"><blockquote><p>Silberman displays rare empathy for the autistic people in his narrative</p></blockquote></figure>
<p>Silberman&rsquo;s background shines through especially poignantly in the parts of autism history that intersect with LGBTQ issues. Nowhere does this come through more so than in the chapters on Ivar Lovaas &mdash; father of the most popular modern autism intervention, applied behavioral analysis &mdash; who in addition to attempting to &#8220;recover&#8221; autistic children through brutal means, led with George Rekers the infamous UCLA Feminine Boys Project, endeavoring to do the same for young children deemed &#8220;at risk&#8221; for homosexuality.</p>

<p>Silberman&#8217;s book also covers more than a century of autism history, indicting some of the reputed giants of the autism world &mdash; not just Lovaas but also Leo Kanner and Bernie Rimland.</p>

<p>It reveals for the first time evidence that Kanner, popularly considered the discoverer of autism, took much of the underlying work from Hans Asperger, whose Jewish chief diagnostician, George Frankl, Kanner helped saved from the Nazis and would later employ and learn from.</p>
<div class="align-right"> <img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/5920665/kanner.0.jpg" alt="kanner.0.jpg" data-chorus-asset-id="5920665"><div class="caption">Leo Kanner, circa 60 years of age, 1963.</div> </div>
<p>Prior to the publication of the book, most historians considered Kanner and Asperger&rsquo;s discovery of autism to be nearly simultaneous and the result of independent research by each. Kanner&rsquo;s friends and defenders maintained throughout his life that he had never read Asperger&rsquo;s work, a dubious claim in light of the discovery of the Georg Frankl connection.</p>

<p>This matters in part because, as Silberman documents, Kanner laid out an overly narrow understanding of the autism spectrum, in contrast to the more inclusive vision of Asperger and Frankl&#8217;s work. Kanner, who is correctly identified in the book as an original source of the discredited idea that parents were at fault for their child&rsquo;s autism, is described within <em>NeuroTribes</em> as acting to emphasize the rarity of the condition he identified, in part so its discovery could be credited as unique to him.</p>

<p>Silberman displays rare empathy for the autistic people in his narrative, describing both nonverbal teenagers and eloquent activists with a deep respect and complex characterization. The book highlights the horrifying impact of the Nazi euthanasia program and the American eugenics movement alike, and accurately ties the wide-scale institutionalization of disabled Americans to the eugenics project. Even people without a background in the autism world will be fascinated to learn about Bill Sackter, a man with an intellectual disability whose friendship with filmmaker Barry Morrow led to the movie <em>Rain Man</em>.</p>

<p>While Sackter had been institutionalized as a child as a &#8220;burden on society&#8221; and faced horrific abuse till he left for life in the community, <em>Rain Man</em> ended with the autistic character being returned to institutional life. Silberman identifies this as the influence of Bernie Rimland, one of the leading parent advocates of the time and an ardent defender of both institutionalization and the later discredited theory that autism was caused by vaccination.</p>

<p>If Silberman&rsquo;s <em>NeuroTribes </em>serves as an indictment of the past 50 years of autism history, Zucker and Donvan have appointed themselves as passionate counsel for the defense.</p>

<p>The authors of each book could not be more different in the life experience they bring. Donvan and Zucker both have autistic relatives, and Zucker has reported on autism from that perspective for some time, serving as producer of the <em>PBS NewsHour Autism Now</em> series in 2011.</p>

<p><em>NeuroTribes</em> and <em>In a Different Key </em>clash most directly in their characterizations of Kanner and Asperger, the two figures associated with the beginning of autism history. <em>In a Different Key</em> presents Kanner as a much more sympathetic figure and does not include any information on Georg Frankl. It also presents Asperger as a Nazi collaborator. To date, the evidence on this question has not yet been made available to the public (Zucker and Donvan&rsquo;s source, a scholar from Vienna, <a href="http://www.npr.org/sections/health-shots/2016/01/20/463603652/was-dr-asperger-a-nazi-the-question-still-haunts-autism">declined to provide his archival material to Silberman</a> and other researchers), but it raises concerning questions that should certainly be explored in more detail.</p>
<h2 class="wp-block-heading">Parental advocacy has been important</h2><div data-chorus-asset-id="5920295"> <img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/5920295/161183077.jpg"><div class="caption">Seven-year-old Connor talks to his father, David Bukovinsky, as they get ready to start their day.</div> </div>
<p>Caren Zucker and John Donvan are clearly coming from a parent point of view. Writing early in the book about Mary Triplett, mother of Donald (one of the first documented cases of autism in the United States from the 1930s), Zucker describes Triplett&#8217;s frustration in terms that seem intimately personal to her, the mother of an autistic child herself:</p>
<blockquote class="wp-block-quote has-text-align-none is-layout-flow wp-block-quote-is-layout-flow">
<p>He had never really cried for her, never fixed his gaze on her and shared a moment of tenderness. Not once during this ride would he look up at her and smile. &hellip; That was the hardest thing for Mary &mdash; Donald&#8217;s utter emotional indifference to her presence.</p>
</blockquote>
<p>The passage hints at an automatic empathy for parents that persists throughout the text. At times this is an asset, though it frequently leaves the book curiously ill-equipped to understand or accurately reflect the criticisms of the autism parent movement from the growing autistic adult community.</p>

<p>This reflexive sympathy becomes more concerning as the book goes on. On page 142, the authors recount a disturbing amount of justification for the murder of Dougie Gibson, a 13-year-old autistic boy killed by his father. The book characterizes the death in terms of a mercy killing, a common narrative adopted by a media quick to presume that it is not the deaths but the lives of disabled children that represent a tragedy.</p>

<p><em>In a Different Key </em>acknowledges no stakeholder more important than parents of autistic children. And certainly parents are important. Both books reflect the extraordinarily impactful role parent advocacy played in securing educational access and debunking the immensely damaging &#8220;refrigerator mother&#8221; theory, popularized by Dr. Bruno Bettelheim, that libeled parents as the cause of their children&rsquo;s diagnosis.</p>
<h2 class="wp-block-heading">But autism happens to autistic people, not their parents</h2><div class="align-right"><img data-chorus-asset-id="5920673" alt="in-a-different-key.0.jpg" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/5920673/in-a-different-key.0.jpg"></div>
<p>The unique cognitive and sensory profile associated with the diagnosis, the communication challenges, and the sense of alienation from mainstream society that struggles to understand us are all autistic experiences, not parent ones.</p>

<p>A decade ago, when the autistic self-advocacy movement was just beginning to enter the realm of politics, many of the early autistic activists and bloggers organized around the sense that parent leaders were writing us out of our own stories.</p>

<p>At the time, autism parent advocacy was particularly brutal. In 2003, the head of the Autism Society of Canada testified to the Canadian Senate, &#8220;Autism is worse than cancer in many ways, because the person with autism has a normal lifespan. The problem is with you for a lifetime.&#8221;</p>

<p>This was not an opinion grounded only in hyperbole &mdash; only seven years earlier, the Autism Society of Montreal had come to the defense of <a href="http://autismcrisis.blogspot.com/2006/11/murder-of-charles-antoine-blais.html">Danielle Blais</a>, a mother who had drowned her 6-year old autistic son, Charles-Antoine Blais, in the bathtub. Autism Society officials took up a collection for Ms. Blais, testified for her in court, and ultimately ensured that she would serve no jail time and would enter the organization&rsquo;s employ as an official representative.</p>
<figure class="wp-block-pullquote alignleft"><blockquote><p>Parent leaders were writing us out of our own stories</p></blockquote></figure>
<p>Throughout the 1990s and early 2000s, disability rights advocates tried and failed to convince the Autism Society of America to prohibit the Judge Rotenberg Center &mdash; a facility in Canton, Massachusetts, infamous for using electric shock devices on children with disabilities as a means of pain-based behavior modification &mdash; from exhibiting at its conference. ASA refused to turn away JRC for years, citing the organization&rsquo;s &#8220;options policy&#8221; affirming the right of parents to select virtually any intervention for their child.</p>

<p>At the Association for Behavioral Analysis International, the major trade association for applied behavioral analysis providers, <a href="https://www.abainternational.org/events/annual/sanantonio2015/exhibitors.aspx">JRC was an exhibitor and conference sponsor as recently as 2015</a>, at the same time as it was under investigation from the Food and Drug Administration, the United States Department of Justice, and the United Nations special rapporteur on torture.</p>

<p>In the words of one parent advocate writing in the Washington Post in 2006, &#8220;Because autistic kids don&#8217;t much notice or care about the outside world, autism actually &#8216;happens&#8217; to the sentient human beings around them.&#8221; And to these uncaring, nonsentient beings, all things could occur.</p>

<p>We have made progress since those days. Parental narratives are still more common, given the comparably privileged economic position and communication skills well-heeled leaders of many national autism parent organizations enjoy.</p>

<p>But more people are recognizing that parent voices are only a part of understanding autism &mdash; and when they refuse to cede space for autistic adults to tell their story, they can actually make the lives of autistic people (of all ages) worse.</p>
<h2 class="wp-block-heading">The neurodiversity movement</h2><div data-chorus-asset-id="5920223"><img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/5920223/shutterstock_266426816.jpg"></div>
<p>This was the point that Jim Sinclair set out to make in a seminal 1993 conference presentation that kicked off what would become the neurodiversity movement. They (Sinclair is intersex) said, &#8220;When parents say, &lsquo;I wish my child did not have autism&rsquo; what they&rsquo;re really saying is, &lsquo;I wish the autistic child I have did not exist.&rsquo;&#8221;</p>

<p>Donvan and Zucker disapprove of these seemingly harsh remarks to parents. &#8220;Sinclair was not a father,&#8221; they chide, and call it &#8220;jarringly reminiscent of Bruno Bettelheim&rsquo;s discredited claim from the 1960s that mothers harbored a secret wish &lsquo;that it would be much better if the child wouldn&rsquo;t live&rsquo;, thus causing autism in their children.&#8221;</p>

<p>But it unquestionably resonated with countless autistic people across the globe. The modern autistic adult community is built on the ideas that Sinclair promoted to such controversy all those years ago. Those words captured how a rising generation of autistic people felt about the unfolding conversation about autism going on &#8220;about us, without us.&#8221;</p>
<figure class="wp-block-pullquote alignleft"><blockquote><p>The neurodiversity movement is about shifting the conversation to the real needs of autistic people</p></blockquote></figure>
<p>From that moment, neurodiversity advocacy was born. And far from being about blaming parents, the neurodiversity movement is about shifting the conversation to the real needs of autistic people &mdash; to the benefit of parents and autistic children and adults alike.</p>

<p>In 10 years of advocacy within that movement, I can attest that the bulk of the work I and my colleagues do is about expanding services and making more support available for autistic people and our families.</p>

<p>We work very closely with parent and provider groups that share our values, including the largest and most mainstream entities in the intellectual disability and Down syndrome advocacy movements, which have moved away from the fear and pity tactics that distorted autism advocacy.</p>

<p>Nor does the neurodiversity movement &#8220;argue that autism is not essentially a disability,&#8221; as Donvan and Zucker <a href="http://www.smithsonianmag.com/science-nature/early-history-autism-america-180957684/?no-ist">described us in Smithsonian Magazine this month</a>. Actually, the very first piece of legislation the Autistic Self Advocacy Network worked on when I came to Washington was the ADA Amendments Act of 2008, which affirmed that autism qualified for disability rights protections under federal law.</p>

<p>Unlike the deaf culture movement, for example, autistic activists see no contradiction between being part of the disability community and believing that there are more important goals for treatment and services than &#8220;normalcy.&#8221;</p>
<figure class="wp-block-pullquote alignleft"><blockquote><p>A vastly disproportionate focus of autism research is on genetics</p></blockquote></figure>
<p>However, the neurodiversity movement has serious concerns on the current state of the autism research agenda. The National Institutes of Health devoted only 2.4 percent of its autism research budget to improving services for autistic people across the lifespan and only 1.5 percent toward adult issues. (That&rsquo;s according to the Interagency Autism Coordinating Committee [IACC], the federal advisory committee tasked with advising the government on autism policy, in 2010.)</p>

<p>A vastly disproportionate focus of autism research is on genetics, and the Autistic Self Advocacy Network and other neurodiversity groups have raised concerns about the eventual ethical implications of that research, as the technology begins to be leveraged for things like <a href="http://www.ncbi.nlm.nih.gov/pubmed/25251361">prenatal testing</a> or <a href="http://humrep.oxfordjournals.org/content/23/4/729.full.pdf">sex selection preimplantation genetic diagnosis</a> (<a href="http://www.fertilitycenter.com/fertility_cares_blog/embryo-selection-to-select-against-autism/">already occurring in Australia as a speculative means to avoid autism</a>).</p>

<p>Working toward any parity on investing in the needs of autistic people today will be a generational project, and that&#8217;s to say nothing of putting safeguards on research with concerning future applications.</p>

<p>Despite that, <em>In a Different Key </em>presents the neurodiversity movement as a grave threat to autism research&rsquo;s future. Activists should be able to question the priorities of the current research agenda without being presented as against investing in autism science altogether.</p>
<h2 class="wp-block-heading">When &quot;therapy&quot; is actually abuse</h2><div data-chorus-asset-id="5920179"> <img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/5920179/Screen%20Shot%202016-01-20%20at%203.27.20%20PM.png"><div class="caption">An image from a Life magazine profile on autism treatment.</div> </div>
<p>Neurodiversity tries to hold the autism parent and provider worlds accountable for promoting therapies that have often crossed the line from assistance into abuse.</p>

<p>In the name of cure and attempting to &#8220;recover&#8221; autistic children, extraordinary abuses have been and continue to be inflicted on autistic children.</p>

<p>Ivar Lovaas (who <em>In a Different Key </em>quotes referring to autistic children as &#8220;little monsters &hellip; [with] hair, a nose and a mouth &mdash;but they are not people in the psychological sense&#8221;) was willing to inflict extraordinary abuse on those under his care. As both books recount, Lovaas was unapologetic about his methods, publishing pictures of his staff slapping children in a glowing 1965 Life Magazine profile called <a href="http://neurodiversity.com/library_screams_1965.html">&#8220;Screams, Slaps &amp; Love.&#8221;</a></p>

<p>Today autistic children are less likely to receive such draconian treatment (though it is still not unheard of), but they are often victims of smaller, more intimate abuses.</p>

<p>Modern applied behavioral analysis providers frequently focus on training autistic children to imitate the trappings of normalcy: eye contact, holding still rather than rocking back and forth, maintaining &#8220;quiet hands&#8221; rather than flapping and other self-stimulatory (&#8220;stimming&#8221;) behavior.</p>

<p>Their methods range from the neutral to the horrifying, but few are given the training or conceptual framework to question their goals. Eye contact or repressing stimming behavior can be distracting and stressful, depriving an autistic child or adult of the energy and focus necessary for academics.</p>
<figure class="wp-block-pullquote alignleft"><blockquote><p>Many unusual autistic behaviors are important and adaptive in nature</p></blockquote></figure>
<p>Is it productive to teach a child to sit still and make eye contact if in doing so he is less able to pay attention to the conversation he&#8217;s listening to? We have a saying in the autistic community &mdash; &#8220;I can look like I&rsquo;m paying attention to you, or I can actually pay attention to you.&#8221;</p>

<p>Many unusual autistic behaviors are important and adaptive in nature. Hand flapping, rocking, and other forms of stimming serve as important means of emotional and sensory regulation for autistic children. For that matter, there are real consequences to being taught from a young age that the way you move and interact is irretrievably wrong. Autistic adults often report lasting trauma associated with childhood experiences with behavioral interventions.</p>

<p>(In 2012, the Autistic Self Advocacy Network published the anthology <a href="http://www.amazon.com/Loud-Hands-Autistic-People-Speaking/dp/1938800028"><em>Loud Hands: Autistic People, Speaking</em></a><em>,</em> collected writings from autistic adults about such experiences &mdash; the title we chose was a subversive play on the common &#8220;quiet hands&#8221; command to avoid stimming in special education classrooms.)</p>

<p>These interventions are often delivered in self-contained, clinical environments, depriving autistic children of valuable class or community time that might better allow them to access the general education curriculum or more fully experience family life.</p>

<p>To their credit, Donvan and Zucker do acknowledge Lovaas&rsquo;s reprehensible use of pain as a means of behavior modification. But they seek to swiftly divorce it from modern applied behavioral analysis, which is presented as having little to do with its early incarnations.</p>
<figure class="wp-block-pullquote alignleft"><blockquote><p>26 percent view contingent electric shock as an acceptable treatment </p></blockquote></figure>
<p>This is not borne out by the research. A <a href="http://www.qc.edu/rcautism/publications/PPshifts%202.pdf">2008 study published in the <em>Journal of Positive Behavior Interventions</em></a> surveyed leading experts in the applied behavioral analysis field and found that 26 percent view contingent electric shock as an acceptable treatment methodology, 43 percent viewed physical punishment as acceptable, and 34 percent viewed sensory punishment as acceptable.</p>

<p>Does this mean that every therapist who offers families support is a modern-day Marquis de Sade? Of course not. Even the most radical of autistic and neurodiversity activists support some form of early service provision for autistic children. Some, like myself, benefited as children from more wholesome approaches to educating autistic kids, like speech and occupational therapy. Others had positive experiences with progressive providers of all kinds, including some who come from behaviorist backgrounds.</p>

<p>Most of the Autistic Self Advocacy Network&rsquo;s work is about advocating for expanding the availability of services, to assist families who might otherwise face significant costs in accessing them.</p>

<p>But the days of pain disguised as treatment are by no means over. The Association for Behavior Analysis International still articulates protocols for and defends the use of aversives, contingent food programs, seclusion, and planned restraint as a form of treatment (as distinguished from its emergency use to prevent imminent risk of harm). Disabled children &mdash; especially autistic ones &mdash; are subject to abysmally poor standards of ethics and human rights by many providers.</p>

<p>I recall being told by an FDA official some years ago, when we approached the agency to ask for a ban on the Judge Rotenberg Center&rsquo;s contingent electric shock device, that we should first consider research randomly assigning children between contingent shock and positive educational methods, to see who had the best outcome. I somehow refrained from asking if he planned to volunteer for that particularly joyful experiment.</p>
<h2 class="wp-block-heading">Different standards for autistic and non-autistic people</h2><div data-chorus-asset-id="5920331"><img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/5920331/shutterstock_296280893.jpg"></div>
<p>At times, I cannot help but feel that Zucker and Donvan hold autistic people to a higher standard of interpersonal behavior than they do their non-autistic protagonists. Lovaas, who overall is one of <em>In a Different Key</em>&rsquo;s heroes, is described as &#8220;entertainingly reckless in the language he used to dismiss anyone who questioned his research methods or findings.&#8221; These traits are seen as charming quirks that only strengthen Lovaas&rsquo;s role as one of the book&rsquo;s central protagonists.</p>

<p>In contrast, the authors paint a very different picture of a 2009 exchange I had with Elizabeth Bell, an activist and the wife of Peter Bell, Autism Speaks&rsquo; then&ndash;executive vice president, at a public forum. Both Elizabeth and Peter Bell have been ardent critics of the overwhelming scientific consensus that autism is not caused by vaccination. They have also been two of the leading voices in the cure movement since the 1990s. I respect their passion but disagree with their views on both the nature of autism and the appropriate agenda for autism research.</p>
<blockquote class="wp-block-quote has-text-align-none is-layout-flow wp-block-quote-is-layout-flow">
<p>&hellip;His determination and his integrity as a campaigner were unassailable. He refused to mince words, fudge facts, or make plays for the affection of his audience. Even face-to-face with an autism mom, whose total love for her child and despair over his future should have been evidence, Ne&rsquo;eman was unyielding. He did not flinch, offer empathy, or soften his tone. Experiencing that, Bell went home thinking that people who still seriously doubted that Ne&rsquo;eman had true autistic impairments were wrong. The total imperviousness she had witnessed appeared to her to reflect not simply Ne&rsquo;eman&rsquo;s convictions, but also an inability to take on a point of view other than his own. This, she knew, was considered a classic autistic trait &mdash;one that Simon Baron-Cohen had referred to as &#8220;mindblindness.&#8221;</p>
</blockquote>
<p>I can&rsquo;t speak to what empathy I did or did not offer Elizabeth Bell in July 2009. If memory serves, the exchange was a polite disagreement, one of many I have had with Autism Speaks&#8217; leaders over many years.</p>

<p>But reading the description of the exchange, I&rsquo;m left with a feeling that Bell, and, by extension, the authors who carry her words, feels a strange sense of entitlement to define the public conversation on autism without interference from autistic voices.</p>

<p>They seem almost scandalized that someone is disagreeing with them in public.</p>

<p>One is left with the impression that an autistic person expressing a strong contrary opinion is mind-blind, whereas a researcher or parent who does so is merely passionate.</p>
<h2 class="wp-block-heading">The neurodiversity movement cannot be ignored</h2><div data-chorus-asset-id="5920289"> <img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/5920289/Screen%20Shot%202016-01-20%20at%203.50.50%20PM.png"><div class="caption">A screenshot from the website of the <a href="http://autisticadvocacy.org/">Autistic Self Advocacy Network</a>.</div> </div>
<p>I would be remiss if I let my personal distaste for how Zucker and Donvan characterize my community get in the way of acknowledging that their book is a part of a promising trend of growing interest in the history of autism and autistic people. <em>In a Different Key </em>does have a few unique gems, not all of which made it into the generally superior <em>NeuroTribes</em>. I learned a great deal about many admirable leaders in the parent movement who played an integral role in the fight to open up public schools, to whom I &mdash; who benefited from special education services as a child &mdash; owe a vast debt.</p>

<p>And while Zucker and Donvan wear their allegiances on their sleeve, I can hardly fault them for doing so, as I certainly do the same. Like Autism Speaks, the National Autism Association, and other parent groups associated with the cure perspective, Zucker and Donvan are capable messengers of a very particular perspective in the autism world.</p>

<p>It is not my perspective &mdash; but unlike a decade ago, it can no longer pretend to be the only one in the autism conversation.<em> </em></p>

<p>Patronized to and disliked though we may be, the neurodiversity movement&rsquo;s presence in <em>In a Different Key </em>is indisputable. The members of the parent culture that dominated the public vision of autism with an exclusive focus on young children and a cure are awakening to a reality in which they must share power with autistic advocates and the growing number of parent and professional allies of the neurodiversity movement. Yesterday, they ignored us, today they laugh at and fight with us, but tomorrow? We will just have to see.</p>

<p><em>Ari Ne&rsquo;eman is the president of the Autistic Self Advocacy Network and served as one of President Obama&rsquo;s appointees to the National Council on Disability from 2010 to 2015.</em></p>
						]]>
									</content>
			
					</entry>
	</feed>
