Unmet Needs of Autistic Adults

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Whitney Schott, Stacy Nonnemacher & Lindsay Shea have an article at The Journal of Autism and Developmental Disorders titled "Service Use and Unmet Needs Among Adults with Autism Awaiting Home- and Community-Based Medicaid Services."  The abstract:

Autistic adults in need of long-term services and supports spend months on waiting lists before receiving such services through Medicaid. Data from a state-wide survey of adults and their caregivers on a waiting list for autism waivers suggest that the majority have unmet needs for functional skills services (63.6%), employment or vocation services (62.1%), and mental and behavioral health services (52.8%). Almost a third require case management services (28.3%). Predictors of greater service need are African American race and the number of physical and behavioral health diagnoses. Predictors of greater service receipt were employment status, housing type, and school enrollment; there was lower service receipt for African American race, Hispanic ethnicity, over age 21 years, and college completion.

 From the article:

The transition to adulthood continues to be a key time for unmet needs to arise and for service use to decline. A recent focus on transition into adulthood has placed a spotlight on issues such as service drop of after aging out of school enrollment (Department of Health and Human Services 2019). Eforts among educators, health administrators, and policymakers to ensure continued access to services including early planning for service transitions are idiosyncratic and often depend on available options in local schools and communities. A specifc challenge for connecting individuals who are waiting for HCBS to services is the lack of cohesion in the education-focused environment of school systems and the dual home- and community-based focus of Medicaid (van Schalkwyk and Volkmar 2017). Elements of a successful transition planning process would bridge these gaps to transcend and plan for service needs beyond an education, home, or community-based focus, and be able to support the individual across all three environments.

Second, racial and ethnic disparities continue to challenge systems, as vulnerable populations have substantially greater unmet needs and are less likely to receive services across the four various service categories. In particular, needs appear to be most acute in employment support services, a crucial need for individuals coming from less  advantaged backgrounds. Eforts to confront this issue could include a system of waiting list triage or priority ranking for service delivery to reach the most vulnerable populations frst. Early, substantial, and efective linkages to employment supports could also provide a fnancial tax incentive for states to meet the employment service needs of the hundreds of thousands of individuals waiting forMedicaid-funded HCBS and could bolster funding for more individuals to enroll in the Medicaid programs, thereby elivering a more robust array of home and community supports.

Third, this evidence suggests that individuals who are in group settings may have better access to services, perhaps as they can be reached more easily in groups, whether that be through community housing, through school enrollment, or through employment. These fndings suggest that community participation may play an important role in simply helping connect individuals to resources that can serve them, while isolation may mean individuals have a lower likelihood of connecting to crucial services. Working to create opportunities for appropriate community participation may further bolster support to individuals with ASD, a key policy\ implication

Biden on Caregiving and HCBS

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

From Joe Biden's policy statement on caregiving:

Biden will allocate $450 billion to give more people the choice to receive care at home or in supportive community situations, or to have that choice for their loved ones. He will help states offer cost-effective options for affordable primary and preventive care, and affordable support services like help with meals, transportation, home safety, and quality day programs for older Americans. This commitment will reduce health expenditures, help more Americans avoid unnecessary and expensive hospitalizations, and result in an expansion of the caregiving and community health workforce by roughly 1.5 million jobs. Specifically, Biden will: 

• Eliminate the current waitlist for home and community services under Medicaid. Approximately 800,000 people are on the waitlist for home and community care under Medicaid. It can take as many as five years for these individuals to get the services they badly need. Biden will increase Medicaid funding to states, the District of Columbia, and outlying territories to pay for the full cost of ensuring these 800,000 individuals and families receive long-term services and supports in the most appropriate setting, with the support of qualified care providers. Following the elimination of the current waiting list, states will be given a choice to convert their current home and community based care services waivers into a new state plan option with an enhanced federal match. This will enable states to make home and community-based services more available to people in need. 
• Establish a long-term services and supports innovation fund to help expand home and community-based alternatives to institutional care. Biden believes we must move aggressively to eliminate the institutional bias that pervades our public programs. A Biden Administration will dedicate substantial resources to this fund to help states and locally based entities test innovative models that expand home- and community-based alternatives to institutional care. These could include approaches that provide care while allowing individuals to retain independence, such as day programs and respite services that enable unpaid caregivers to work, alternative home and community models that coordinate or directly provide care, and Medicaid buy-in models. For example, the CAPABLE (Community Aging in Place-Advancing Better Living for Elders) Program provides home repairs and modifications to help create safer, more functional home environments for older adults. An initial trial in Baltimore found about $3,000 in program costs yielded more than $20,000 in savings. The pilot is now being tested in 27 cities in 16 states. Successful, cost-effective approaches to long-term care will be scaled up nationally. This fund will be administered by the Center for Medicare and Medicaid Innovation, which was established by the Affordable Care Act to support innovations that improve health care while constraining costs

SSI Limits

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

Becca R. at Yahoo:

Imagine the year is 1984. A dollar went a lot further than it does today. What cost a dollar then would cost $2.47 in 2020. In 1984, the SSI asset limit was $2,000, and that amount remains the same today.

In 2020, clearly $2,000 doesn’t get you as far now as it did back in 1984. With inflation of 147%, the $2,000 asset limit from 1984 would equate to $4,935 in 2020. The asset limit should be increased to $4,935 and continue to grow with inflation year after year.

Experts say that your emergency fund should be large enough to cover expenses for a minimum of three to six months.

In 1962, Congress established an income exemption permitting Aid to the Blind (a predecessor to SSI) recipients to keep their first $85/month of earned income plus half of anything above that.

Modern day SSI still has the same income exemption.

— Ari Ne'eman (@aneeman) July 8, 2020

A September Release from Rep. Elissa Slotkin (D-MI):

U.S. Rep. Elissa Slotkin (MI-08) along with Rep. Raúl Grijalva (AZ-03) introduced the Supplemental Security Income Restoration Act today, a bill that makes common-sense but impactful adjustments to the Supplemental Security Income (SSI) program, which provides assistance to disabled or elderly individuals, but has gone largely unchanged since 1972.

Constituents in the autism advocacy community raised with Slotkin that the SSI program’s outdated restrictions currently prevent individuals with disabilities, and families caring for them, from accessing benefits the program is intended to provide. For instance, because the program has not kept pace with inflation, individuals with more than $2,000 in their savings account would not be eligible for benefits under this program.

“This issue is one I have heard about directly from autism advocates and families in our district, particularly parents preparing for children with disabilities to transition into adulthood,” Rep. Elissa Slotkin said. “I’m so proud to introduce a bill that can help ease the burden these restrictions are currently imposing on families trying to access benefits through this program. This bill brings the Supplemental Security Income (SSI) program’s outdated limits up to speed with inflation -- a common-sense adjustment that will make a huge difference for individuals and families caring for someone with disabilities.”

...

"Autism Alliance of Michigan is a statewide professional organization serving individuals with Autism and Related Disabilities across the lifespan. The limitation on SSI has been a barrier for so many of our citizens living with disability in their pursuit of employment options. We applaud Representative Slotkin for introducing this important legislation and encourage others to support her efforts moving it forward,” said Colleen Allen, President and CEO.

 The Supplemental Security Income Restoration Act:

• Updates the amount individuals can earn from work to $399 a month, to encourage work from those who are able.
•  Updates the amount of general income a person can make to $123 per month (general income is money received through means other than work).
•  Repeals the marriage penalty and updates the amount of resources a person or couple can have to $10,000 and $20,000 respectively, so people can save for emergencies.
•  Repeals the penalty for financial, food, and housing support from family.
•  This bill streamlines and simplifies the claims process and restores a program that plays a pivotal role in the security of millions of Americans including over a million children.  

Dell and Neurodiversity

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

Sam Farmer at The Hill:

It comes as no surprise that Dell has chosen to pursue a culture of neurodiversity. CEO Michael Dell has been quoted as saying “diversity and inclusion helps drive innovation and growth, and is critical to the long-term success of our company. I'm proud of the legacy we are building as an employer of choice for all.” New ideas from a diversity of perspectives result in a greater capacity for problem solving. New ways of thinking are incorporated into the technology offerings, fostering greater accessibility. And the autistic employees benefit as well. As such, Dell's Autism Hiring Program is a win-win-win proposition: for the company, for its people and for its customers.

When asked to speak about their employment experience at Dell, a few of the autistic members of Dell’s workforce have had wonderful things to say, as have their nonautistic colleagues. These folks admit to being eager to learn and to try new things. They value having an impact on those around them and being able to teach others. Dell affords them these opportunities, and taking advantage of them instills in them a sense of fulfillment, empowerment, belonging and connectivity with their colleagues. The business impact of these outcomes is the enhancement of team spirit, cohesion and focus.

Education Bureaucracy Wants Protection from IDEA Litigation

In The Politics of Autism, I write about IEPs and FAPE. The Supreme Court ruled in Endrew F. v. Douglas County School District that the Individuals with Disabilities Education Act (IDEA) requires public schools to provide heightened educational benefits to students with disabilities.

Parents usually lose in due process hearings.

COVID is a new source of conflict.  Providing education is proving to be very difficult.

AASA, The School Superintendents Association, as well as the National School Boards Association and the Association of Educational Service Agencies have issued a white paper titled "School Leader Voices: Concerns and Challenges to Providing Meaningful IDEA-related Services During COVID-19."

As schools prepare to reopen in the fall, there is a growing concern that school districts and educational service agencies will face unparalleled rates of litigation for their inability to meet requirements under the Individuals with Disabilities in Education Act (IDEA) during the COVID-19 pandemic. This concern is well-founded. IDEA guarantees eligible students with disabilities a “free appropriate public education”
(FAPE) and a right to pursue a complaint through a due process hearing and federal court. Similarly, Section 504 of the Rehabilitation Act (Section 504) and the Americans with Disabilities Act (ADA) require equal access to educational opportunities for students with disabilities. Also, the regulations implementing Section 504 require FAPE. However, during this unprecedented pandemic, FAPE comes with tremendous
costs to budgets and additional burdens on personnel that challenge school districts trying their best under the circumstances to meet the requirements.

To gauge the degree of concern, the Association of Educational Service Agencies (AESA) surveyed a subset of its members in 28 states between May 20 and June 16, 2020. AASA, the School Superintendents Association, also surveyed school leaders nationwide on the school response to the coronavirus pandemic in May of 2020. The National School Boards Association (NSBA) has been collecting examples of IDEA-related concerns across the country since the beginning of COVID-19. The data gathered by these organizations informs our understanding of how potential and actual special
education litigations related to meeting the IDEA requirements during the pandemic may impact the budgets and operations of schools.
...

“School board members and other public school leaders have managed a herculean task to serve students during the pandemic,” said Anna Maria Chávez, the NSBA Executive Director & Chief Executive Officer, in a recent national reopening collaboration document11 released by the National Labor Management Partnership (NLMP).

“We all agree that FAPE is important, but the legal understanding of FAPE during a pandemic cannot be the same thing as FAPE under normal educational circumstances. ESAs and school districts are doing the best they can to ensure all students are appropriately served when schools are closed due to a pandemic. Flexibility
at the federal government to shield districts from frivolous lawsuits is essential to putting ESAs and districts on a path towards a successful next school year,” according to Joan Wade, AESA Executive Director.

AASA Executive Director Daniel Domenech stated that “Congress must act swiftly to provide liability protection to districts around IDEA. District leaders need to be focused on addressing learning loss, not preventing litigation. This is not a free pass for districts to stop serving students with disabilities appropriately. Instead, this is an opportunity to provide reasonable, temporary, litigation protection for the vast majority of districts that are doing everything feasible to meet IDEA during the pandemic, but simply cannot meet every requirement exactly as intended for every single child.”

Although the U.S. Department of Education recognized that exceptional circumstances may affect how special education and related services/supports are provided to students with disabilities and would offer flexibility12, the policy support has been inadequate. The data from AESA, AASA, and NSBA suggest the flip side of flexibility, that is, the ambiguity of federal or state policies could lead to legal challenges for school practitioners.

Vaccine Hearing

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Emily Kopp at Roll Call:

The Food and Drug Administration should hold hearings and publish data before it approves a COVID-19 vaccine to boost public confidence, experts in infectious diseases and vaccination advise.

“It is incumbent on us as scientists to convey to the American public what we’re finding and seeing very, very clearly and loudly,” said Jay Bhattacharya, a Stanford School of Medicine health economist and professor of medicine, at a House Oversight Subcommittee on Economic and Consumer Policy hearing Tuesday.

The fallout from disinformation falsely linking the measles, mumps, and rubella vaccine to autism, seeding the anti-vaccine movement, is a cautionary tale, he said.

“There, the early publication of essentially misleading information was incredibly damaging. So I think in the future and for the vaccine that comes out of this process . . . making the data transparent and available so everybody can see what the safety concerns are, if there are any, is absolutely critical,” Bhattacharya said.

Trust in an eventual COVID-19 vaccine will be fragile, public experts worry, because of these anti-vaccine conspiracy theories; the project’s unprecedented speed; FDA’s reversal on authorization for antimalarial drug hydroxychloroquine to be used against COVID-19; historical harms to Black Americans; and deep disapproval of President Donald Trump’s response to the pandemic.

At about 1:08, antivax Representative Glenn Grothman (R-WI) cited the conspiracy theorist Judy Mikovits and actually asked if the committee should hear from people like her.

Vaccines and Conspiracy Theory

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19. The antivaxxers are joining up with protests against the coronavirus shutdown. Belief in conspiracy is a common denominator.

Peter Jamison at WP:

Although African Americans stand to benefit enormously from a vaccine, they remain distrustful of a medical establishment with a history that includes the Tuskegee syphilis study and surgical experiments on enslaved people — not to mention the ongoing disparities they confront in the U.S. health-care system.

A recent Washington Post poll found that 63 percent of black adults said they were likely to get a coronavirus vaccine, compared with 70 percent of whites and 78 percent of Hispanics. Only 32 percent of black adults said they would definitely get a vaccine, compared with 45 percent of whites and Hispanics.

...
Assertions of disproportionate harm to African Americans from inoculation are often based on a 2004 Centers for Disease Control and Prevention study that set off one of the more bizarre episodes in vaccine science history. That study, conducted in Georgia, observed slightly higher rates of autism among children who had received immunizations than among those who had not. The authors said this was probably because autistic children were required to be vaccinated to participate in preschool special-education programs.

Their findings were called into question when one of the authors, William Thompson, later claimed the CDC had suppressed data showing a stronger link between vaccines and autism in black children than in white children. Thompson’s allegations, made during secretly recorded telephone conversations with anti-vaccine activist Brian Hooker, were never substantiated. A 2014 paper Hooker published on the subject was retracted.

Anna Merlan at Vice:

But it’s not just QAnon. The strain of living in this particular time, with a dragging, devastating pandemic and a global uprising against police brutality and racial injustice, crashing together at the highest speed, has accelerated something that’s been going on for years. Call it the conspiracy singularity: the place where many conspiracy communities are suddenly meeting and merging, a melting pot of unimaginable density. UFO conspiracy theorists and QAnon fans are advocating for drinking a bleach solution promoted by anti-vaxxers. QAnon groups and Reopen America groups alike promoted Plandemic , a film clip jam-packed with conspiratorial claims about the causes and spread of COVID. The Freedom Angels, an anti-vaccine group based in California, are among the many such groups joining anti-lockdown protests, using language that feels heavily drawn from the Patriot movement: They're calling stay-at-home orders “tyranny,” addressing their followers as “Patriots,” and positioning themselves as “a new civil rights movements.” (They urged people to burn their facemasks on July 4th, adding, floridly: “Join millions of Americans on Independence Day as we show all these BLUE STATE GOVERNORS, SWAMP DOCS, and DEEP STATE RATS 🐀 how we feel about their latest ORDERS, DICTATES and MANDATES to wear our muzzles again.”)

Finding the Autistic Community

 In The Politics of Autism, I examine the role of social media in the development of the issue.  Social media can spread vaccine disinformation, but they can also provide autistic people and their families with a way to connect with one another and to press for government action.

Joseph Shapiro at NYT:

Also true to their age group, members of the A.D.A. generation use social media to meet and organize. Ari Ne’eman was 18 when he started the Autistic Self Advocacy Network online in 2006 to challenge the prevailing narrative about autism, one that was driven by parents’ groups and researchers. It largely saw autism as a tragedy and the answer as a cure.

For Mr. Ne’eman and other autistics, that ran counter to the proof of their lives, which were rich and fueled by the ambitions promised by the A.D.A. He and others wrote and organized to shatter the old images of autism. A recent academic study of newspaper content credited their work for a dramatic shift to positive depictions of autistic life.

Mr. Ne’eman, now a visiting scholar at the Lurie Institute for Disability Policy at Brandeis University, said, “Finding the autistic community online was important to me because it sent the message that you don’t actually have to take, as written on stone tablets, everything that professionals say about you as true.”

Thus social media perform the same function that Tocqueville ascribed to newspapers: "Then a newspaper gives publicity to the feeling or idea that had occurred to them all simultaneously but separately. They all at once aim toward that light, and these wandering spirits, long seeking each other in the dark, at last meet and unite. The newspaper brought them together and continues to be necessary to hold them together." (Democracy in America, Lawrence/Mayer ed., p. 518)

How to Talk to Antivaxxers and Other Conspiracy Theorists

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19. The antivaxxers are joining up with protests against the coronavirus shutdown. Belief in conspiracy is a common denominator.

Tanya Basu at MIT Technology Review:

1. Always, always speak respectfully. Every single person I spoke to said that without respect, compassion, and empathy, no one will open their mind or heart to you. No one will listen.
2. Go private. Donovan says that when she sees someone post something problematic on social media, she doesn’t pile on in the comments section. “I might send someone a text or reach out in a personalized way through DMs rather than post on their wall,” she says. That prevents discussion from getting embarrassing for the poster, and it implies a genuine compassion and interest in conversation rather than a desire for public shaming.
3. Test the waters first. That way you save yourself time and energy. “You can ask what it would take to change their mind, and if they say they will never change their mind, then you should take them at their word and not bother engaging,” r/ChangeMyView moderator ihatedogs2 told me. In fact, the subreddit has a list of behaviors that indicate if a person is not genuinely open to discussion.
4. Agree. Remember the kernel of truth? Conspiracy theories often feature elements that everyone can agree on. Establish those to help build trust and an “I’m on your side” vibe to prep for the stickier stuff to come.
5. Try the “truth sandwich.” Use the fact-fallacy-fact approach, a method first proposed by linguist George Lakoff. “State what’s true, debunk the conspiracy theory, and state what’s true again,” Donovan says. For example, if you’re talking to someone who believes the 5G conspiracy theory, you could structure your argument as “Coronavirus is an airborne virus, which means it is passed by sneezing, coughing, or particles. Because viruses are not transmitted via radio waves, coronavirus, which is an airborne virus, can’t be carried by 5G.” It’s repetitive, but it reinforces facts and points out where the conspiracy theory doesn’t work.
6. Or use the Socratic method. In other words, use questions to help others probe their own argument and see if it stands up. Stuart Johnson, a mod on r/ChangeMyView, says that this is by far the most effective approach he’s found, as it challenges people to come up with sources and defend their position themselves. “The best way to change someone’s view is to make them feel like they’ve uncovered it themselves,” he says. That means engaging in back-and-forth questions and answers until you hit a dead end, gently pointing out inconsistencies. Studies show that people often think they know more about a policy then they let on, and the Socratic method can reveal those inconsistencies. Research shows this tactic can prevent one party from feeling attacked.
7. Be very careful with loved ones. Every single person I spoke to hesitated when asked how to confront a loved one, like a parent or sibling, who believes in conspiracy theories. Many said they back off if the relationship is extremely close. “You have to perform a calculation on whether it’s worth it to engage,” ihatedogs2 told me. “How deeply do they believe it? How harmful is their belief?” It can be tough, but biting your tongue and picking your battles can help your mental health too. As another r/ChangeMyView user, Canada Constitution, put it: “A harmonious Thanksgiving is preferable to fights over social media.”
8. Realize that some people don’t want to change, no matter the facts. In highly politicized areas, researchers have found, some people rationalize their belief system—even if reality counters it—simply because it’s difficult to be in the wrong. Canada Constitution once ran into this in trying to talk to someone who thought psychiatric medication was a conspiracy: “No matter how many peer-reviewed studies I pulled up, they would not budge. Rather than get frustrated, I took the opportunity to ask them further questions to understand their beliefs.” Taking this approach not only helps you refine your argument but also is more compassionate.
9. If it gets bad, stop. One r/ChangeMyView moderator suggested “IRL calming down”: shutting off your phone or computer and going for a walk. Another put it even more simply: “If I am not enjoying the discussion and getting angry, then I simply stop.”
10. Every little bit helps. One conversation will probably not change a person’s mind, and that’s okay. “People aren’t going to have seismic shifts in beliefs all at once,” an r/ChangeMyView mod, themaskedserpent, told me. “Sometimes you can shift someone’s perspective a little, like water eroding a rock. You won’t debunk a conspiracy theory but lay the path for someone in the future to do so.”

The Moloch of Mar-a-Lago

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

Coronavirus presents unprecedented challenges to public policy and the electoral process. Trump has a bad record on health care issues, especially now.

Lloyd Green at The Guardian:

Like Moloch, the ancient pagan god, Donald Trump is ever ready to demand that Americans sacrifice themselves for his greater good. He commanded that states open up early, and then this happened: Arizona, Florida, and Texas are looking like Wuhan redux. Come this fall, the president also expects that parents will put their children in harm’s way for the sake of his re-election bid. In response, teachers have taken to drafting their wills, just in case.

But other moments, Trump acts like a man with a political death wish of his own. His justice department is urging the US supreme court to strike down the Affordable Care Act as unconstitutional. The fact that 5.4 million people have already lost their health insurance amid the pandemic does not even register as a blip on the administration’s radar.

Instead, last month the government filed its brief with the high court in its endless endeavor to erase Barack Obama’s legacy. Just think of Wile E Coyote chasing Road Runner and you get the picture.

...
The amicus briefs filed in opposition to the government’s position are bad news for the president. Portions of Trump’s base are actively aligned against him. In simplest terms, older voters and Catholic Americans don’t necessarily like what they are seeing.

AARP and the Catholic Health Association have come out swinging to defend Obamacare. AARP speaks for America’s seniors, and older voters are walking away from Trump.

...
In Too Much and Never Enough, Mary Trump, the president’s niece, writes that if the president “can in any way profit from your death, he’ll facilitate it, and then ignore the fact that you died”. As her book dropped on Tuesday, the Grim Reaper’s scythe is again unsheathed. Covid is going full-bore. The prospects of Trump as a one-term president grow.

Disability, Race, and the Police

In The Politics of Autism, I discuss interactions between first responders and autistic people. 

Autistic people may have poor eye contact or engage in repetitive behaviors, which may strike police officers as suspicious. They also might be slow to react to police commands, which can cause a routine stop to spin out of control. In Greenville, South Carolina, one news account tells of an autistic man named Tario Anderson: “Officers said they saw Anderson walking on the sidewalk and tried him to question him. They said when they put a spotlight on Anderson, he put his hands in his pockets, started walking the other way and eventually started running from them. He was shocked with a Taser and arrested because he didn’t follow the officers’ commands.”[i] Anderson is also African American, which adds another dimension to the story. In the wake of incidents in which African Americans had died at the hands of white police officers, one father wrote of his autistic son: “What if my son pulling back from a cop is seen as an act of aggression? What if a simple repetitive motion is mistaken for an attempt at physical confrontation? If a cop is yelling at my son and he doesn’t respond because he doesn’t understand, what’s stopping the cop from murdering my boy in cold blood?”[ii]

Areva Martin at Mic:

I know that I am not alone when it comes to worrying that a loved one with autism, or a developmental disability, or mental health challenges will one day encounter the wrong cop — one who won't recognize that special needs people often require patience. I recently spoke about my worries concerning my son on CNN and the response from viewers who empathized with my fears was overwhelming. One email was particularly moving.

"I saw you today on CNN. While I was trying to process the horrible news that just doesn't seem to stop, I heard you mention your concerns for your son. When you began to speak about his autism and how much you worry about the constant possibility of him being shot for being a young Black man and an autistic young man, my tears spilled over. My son is 30 and autistic. My son is white but he is your son. Your son is Black but he is my son. Today (shown on CNN crawl) in Jerusalem, the Israeli police shot and killed a Palestinian man who they later learned had Autism. I am Jewish but that man is my son. That man is OUR son.

The intersection of so many kinds of lives binds us together. We must find a way for all of our sons and daughters to be safe. To be loved and safe.

I pray for reconciliation, recognition, and rebuilding of the shredded social fabric of the United States. Thank you for sharing your story.” - Faye

I was truly touched by Faye’s words, and I do believe America would be a much better place if more people could see the world through eyes as honest and loving as hers. But every time I turn on the news and see the story of an Elijah McClain, an innocent, unarmed Black man who was murdered by police, I am reminded that my son is not Faye’s son. My son is a Black man, and to racist cops that makes him only one thing — a suspect.

Chelsey Cox at USA Today:

About one-third of people killed by police have a mental or physical disability, McDeid said. A Washington Post tally found nearly a quarter of those shot and killed by police had a mental illness.

Six years ago, Dontre Hamilton, who had schizophrenia, was shot 14 times by a Milwaukee police officer who had not received any specialized training on interacting with people with mental illness. After George Floyd's death, people of color with disabilities were inspired to march for Hamilton and others, The Milwaukee Journal Sentinel reported.

...
A study conducted in 2019 by the nonprofit Stop Street Harassment found that people with disabilities are more likely to experience sexual harassment and assault. People with disabilities were the victims of sexual or aggravated assault, robbery and rape at twice the rate of people without disabilities, according to a summary released in 2017 by the Bureau of Justice Statistics.

One in five surveyed said their disability made them a target.

“Clearly people can tell by interacting with me or observing me that I'm not ... normal by ableist definitions of normal, even if they wouldn't know the specific language to use. But many people would think, ‘that person is a target,’ ” said [Lydia X. Z.] Brown, who has autism and survived a near-sexual assault.

In a Washington survey of people with disabilities who said they experienced harassment, only 12% said they filed a police report. Distrust of police was one reason, according to a report by the D.C. Office of Human Rights. The office found that people with disabilities are publicly targeted for harassment more often than any other marginalized group aside from immigrants.

The Problem of Guardianship

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

Tyler Cowen at Bloomberg:

[T]he error rate for decisions about guardianship, in contrast with the medical error rate, is unknown. There is also a dearth of information about the overall numbers of autistic Americans under guardianship. In American history, lack of transparency has too often been correlated with unfairness and prejudice.

One study considered 8,713 diagnosed autistic adults in the U.S. Of that cohort, 5,025 were legally dependent, with a court-appointed custodian of some kind. Regardless of whether this is a representative sample, guardianship is by no means a rare practice. Of that group, 43.4% were listed as intellectually disabled, and about two-thirds had at least one psychiatric disorder over the course of their lifetimes (with imperfect scrutiny, the general U.S. rate registers at one half).

These numbers hardly settle the question. But they do raise the possibility that many of these adults may never have needed guardianship status in the first place.

Such a lack of transparency is shocking. Once people have lost their rights, it is not particularly easy to win them back, if only because they do not have control over their own life. How do you prove that you are capable of making your own decisions?

COVID Risk in Residential Group Homes

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

Scott D. Landes and colleagues have an article in Disability and Health Journal titled:"COVID-19 Outcomes among People with Intellectual and Developmental Disability Living in Residential Group Homes in New York State."  The abstract:

Background

People with intellectual and developmental disabilities (IDD) may be at higher risk of severe outcomes from COVID-19.

Objective

To describe COVID-19 outcomes among people with IDD living in residential groups homes in the state of New York and the general population of New York State.

Methods

Data for people with IDD are from a coalition of organizations providing over half of the residential services for the state of New York, and from the New York State Department of Health. Analysis describes COVID-19 case rates, case-fatality, and mortality among people with IDD living in residential group homes and New York State through May 28, 2020.

Results

People with IDD living in residential group homes were at greater risk of severe COVID-19 outcomes: case rates – 7,841 per 100,000 for people with IDD compared to 1,910 for New York State; case-fatality – 15.0% for people with IDD compared to 7.9% for New York State; and mortality rate – 1,175 per 100,000 for people with IDD compared to 151 per 100,000 for New York State. Differences in cases and mortality rate were confirmed across regions of the state, but case-fatality rate was only higher for people with IDD in and around the New York City region.

Conclusions

COVID-19 appears to present a greater risk to people with IDD, especially those living in congregate settings. A full understanding of the severity of this risk will not be possible until US states begin publicly sharing all relevant data they have on COVID-19 outcomes among this population.