WRITING
So it looks like all the things I thought I had posted since March have disappeared and perhaps were never published? Oh well.
There are some new posts on my personal blog:
But the big news, of course, is that my book will be coming out in just over a month–August 15. And you can pre-order it on Amazon if you want.
I have finally finished a full draft of my book on autism and human rights in the U.S. Still have to do a bit of copy editing and then some formatting, but the book should be out sometime this summer.
Greetings, All!
Sorry to have been away for so long. There was the sprained ankle, the dislocated shoulder, the broken toe, the distraught older daughter, the distressed younger daughter, etc., etc. But I’m still here and still writing.
Have finished Chapter 5 on Health Care. Just one chapter to go, and have already written part of it.
Looks like I’ll be going with self-publishing. I have had nibbles from university presses, but that’s not really the audience I want. As to commercial presses (and literary agents)–can’t even get them to officially turn me down. Dead silence. So–look to Amazon a few months from now.
I’ll let you all know about the virtual book launch as the time approaches.
Take care
Dear Folks. As you know, I’ve been working for years now on a book on autism and human rights. I’ve recently been looking for publishers, and one of them, on their submission portal, asked how long the book was. So I went back and counted words.
Whoops! It’s way, WAY longer than anyone is going to publish or most normal (autistic or neurotypical) people would want to read. Being who I am, I need to provide data to back up the points I make. But the data is making the book far too long. So–change of plan.
I’m going to take most of the data and detailed arguments about the data out of the book and put it on my other blog: https://thatbloodycat.com
So if anyone wants to know why I make certain claims, the back-up information will be there.
If you’re interested, check out the blog.
Mel Baggs, influential blogger and autism activist, suffered from a variety of serious medical problems that worsened over time. On March 28, 2020, she posted the following on one of her blogs. It is not written in her usual, carefully honed style—she was too desperate for that:
I am going to run out of crucial meds. This is me shamelessly begging for money. . . . It needs to be real money, not a gift card, because we have to use it at the pharmacy. If the pharmacy is open. And it needs to be a whole lot of money because meds are expensive and we are running out of ones that will keep me alive. . . . Please help please someone help ideally lots of people help.[1]
Mel died less than two weeks after she posted this. She was 39 years old.[2]
Citizens of other developed countries, where there are national health services, may be shocked at how common begging for money to pay for medication and medical treatment is in the U.S., where we supposedly have “the greatest health system in the world.” Begging for medical help is completely ordinary, hardly even noticeable here. Stores routinely have jars on their counters, into which customers can drop spare change to help with “An’twan’s surgery” or “Mimi’s cancer treatments.” Often there are photos of the sufferers taped to the front of the jars to encourage generosity. Religious and community organizations regularly hold fundraising potlucks and concerts to help families who just can’t afford the treatment their members need. More recently, those in distress have turned to crowdsourcing, on online sites like GoFundMe. And it’s important to realize that it is not just the poor who suffer and must beg. Unexpected medical expenses are the most common cause of bankruptcies among middle class families in the United States, and these families, too, must sometimes plead for help.[3] But for autistic people, this humiliating exercise is too often futile. They usually lack the social support networks necessary for survival.
[1] Mel Baggs, “We need real money badly” on her Cussin’ and Discussin’ blog, March 28, 2020: https://cussinanddiscussin.wordpress.com/2020/03/28/we-need-real-money-badly/.
[2] Neil Genzlinger, “Mel Baggs, Blogger on Autism and Disability, Dies at 39,” The New York Times, April 29, 2020.
[3] Gordon Burtch and Jason Chan, “Investigating the Relationship Between Medical Crowdfunding and Personal Bankruptcy in the United States: Evidence of a Digital Divide,” MIS Quarterly 43:1 (2019), 237-262.
Recent research has shown that there are significant racial disparities in the way American public insurance programs (Medicaid/Medicare) treat autistic people.
Black autistic children, for example, are much less likely than their White counterparts to receive physical therapy, occupational therapy, 1-on-1 counseling, or case management (to help coordinate services)–even when both groups are reliant on Medicaid.
During the complex transition from childhood to adult Medicaid services, African American youth are much less likely than Whites to receive help from case managers, doctors, and other professionals.
Overall, 52% of all adult autistics using Medicaid have unmet physical or mental health needs. The percentage is even higher for African Americans and Hispanic Americans.
The way autistic people are treated by the American health system is already bad enough. Racial disparities that make things worse for members of minority groups are absolutely unacceptable.
Sources:
Lucy Bilaver, et al., “Understanding Racial and Ethnic Disparities in Autism‑Related Service Use Among Medicaid‑Enrolled Children,” Journal of Autism and Developmental Disorders 51 (2021), 3341-3355.
Teal Benevides, et al., “Racial and ethnic disparities in benefits eligibility and spending among adults on the
autism spectrum: A cohort study using the Medicare Medicaid Linked Enrollees Analytic Data Source,” Plos One (May 25, 2021).
Whitney Schott, et al., “Service Use and Unmet Needs Among Adults with Autism Awaiting Home‑ and Community‑Based Medicaid Services,” Journal of Autism and Developmental Disorders 51 (2021), 1188-1200.
Casey Walsh, et al., “Health Care Transition Planning Among Adolescents with Autism Spectrum Disorder,” Journal of Autism and Developmental Disorders 47 (2017), 980-91.
When extreme conditions make it necessary to ration health care, medical systems begin to “triage” their patients—separating them into different priority groups, based on who is most likely to benefit from treatment. This has already happened during the Covid-19 pandemic in individual hospitals, cities, counties, and even entire states (as of this writing, Idaho and Alaska). In its traditional form, triage involved dividing patients into three groups: those who can probably get better without treatment, those who will never survive even with treatment, and those who can probably get better with treatment. The last group gets medical priority. This is the formal kind of triage performed by medical systems. I’ll come back to that. But it’s important to recognize that there is also an informal kind of triage created by our country’s systematic unwillingness to recognize and care for people at the margins—the impoverished, the homeless, the uninsured. Many autistic people fall into these categories.
The Centers for Disease Control and Prevention recommends that if someone thinks they might have covid they should, first of all, stay home and not go out in public. (Centers for Disease Control and Prevention, 2021). Which is fine if you have a home. But what if you are living in a tent under a highway overpass and have no money? How can you ever get better if you’re hungry and thirsty and sleeping in the cold? If your symptoms worsen, the CDC then recommends that you call 911 or your local emergency facility. But what if you have no phone or you are a non-speaking autistic? What if you don’t have a car or someone to give you a lift? What if you live on a reservation many miles from the nearest hospital? In all of these situations there’s no way to get to the hospital for the care you need to survive. The way our society is structured already ensures that some people will die without treatment, even before they get to the place where formal triage takes place.
But let’s assume that you can make it to the hospital. In a health emergency, formal triage is a multi-step process and can involve multiple decision-makers at more than one stage of treatment. For example, when many people need transportation, EMTs may decide who gets delivered to the hospital first; in the emergency room, triage nurses determine who gets examined first; in the Intensive Care Unit, the ICU Director says who gets one of the rare available beds and who gets one of the ventilators in short supply. This process of prioritizing and allocating scarce resources is always an ethical minefield. In theory, a medical practitioner’s primary obligation should always be towards her or his individual patient, whereas a health system in crisis will be thinking not in terms of individuals, but of public health. When the interests of the patient are not the same as the interests of “the public,” the difference can—indeed should—create a conflict. And these conflicts must somehow be resolved, even though the process of resolution can be heart-wrenching. Many medical personnel have described the emotional trauma they have suffered over the last year and a half from being forced to decide, under pressure and at short notice, who will (probably) live and who will be left to die. This is not what they were trained for; this is not what they signed up for (American Psychiatric Association Committee on the Psychiatric Dimensions of Disaster and Covid-19, 2020).
To help guide nurses, physicians and others through this process, many hospitals, local governments, and states have developed “Crisis Standards of Care” (CSCs), a set of priorities to be used during triage to determine who should receive scarce medical resources and who should not. These guidelines are focused on maximizing the public health benefits of the limited resources available during a crisis such as the Covid pandemic. But determining what is best for public health is itself a tangle of ethical conundrums (American Medical Association, 2020).
In February, 2021 a coalition of disability rights organizations, including the Autistic Self-Advocacy Network, pointed out the threat of “intersectional discrimination” in CSCs (Anonymous, 2021). The report notes that
while crisis standards of care typically prioritize patients who are more likely to survive hospitalization, many have included provisions that discriminate based on disability, age, and race in violation of civil rights laws.
A number of the CSCs in use in the early stages of the Covid pandemic overtly discriminated against people with disabilities. A notorious example is the state of Alabama’s 2020 CSC, which specified that people with intellectual disabilities or dementia should not have access to ventilators (Bagenstos, 2020). For a while, Utah actually allowed ventilators that disabled people owned and brought into hospitals for their own use to be reallocated to other patients while their owners were still alive (U.S. Office of Civil Rights, 2020B). An early draft of Pennsylvania’s CSC allowed physicians to take into account their own assumptions about disabled patients’ “quality of life” (Brubaker, 2020). Such guidelines were so obviously illegal under the Americans with Disabilities Act, and so obviously dismissive of the American Medical Association’s Code of Ethics (American Medical Association, 2020), that they were later revised. But the fact that such guidelines existed at all illustrates the attitudes that some (perhaps many) medical personnel have towards people with disabilities.
Most CSCs now overtly state that decisions about who should receive treatment should not be based on “categorical exclusions”—denying care to whole categories of people such as the elderly, the disabled, members of racial or sexual minorities, etc. Yet even when Crisis Standards of Care are free of explicitly discriminatory language, the circumstances of treatment make it likely that discrimination will still take place. When the line is out the door, and hundreds of people are clamoring for help in the ER, what becomes of an autistic person who, overwhelmed by the ER’s sensory pressures, has a meltdown? Under the circumstances is the nurse even able to find that person a quiet place to recover enough to describe their Covid symptoms? Will she or he hold that person’s place on the priority list for care? Maybe. But maybe not.
What’s more, the principles upon which CSCs are based still allow healthcare discrimination to take place. Acceptable approaches to triage in most CSCs now emphasize “saving the greatest number of lives” in the short term (until acute illness is over and the person leaves the hospital). This seems straightforward, but in practice may not be quite so simple. The guidelines issued by hospitals, localities, and states are usually based on methods like the “sequential organ failure assessment” (SOFA), which look at specific indications of decline in several organ systems in order to determine whether someone is going to die, regardless of treatment. But SOFA scores can themselves be discriminatory, as the Justice in Aging organization pointed out (Justice in Aging, 2020):
SOFA scores use a series of tests to measure physical, neurological, cognitive, and verbal functioning. This can disproportionately harm PWD [Persons with Disabilities] with functional limitations and may result in an unfavorable SOFA score due solely to their underlying condition and not their actual prognosis.
In the early stages of the pandemic, for example, hospitals refused entry to anyone who was not actually a patient, in order to prevent the further spread of disease. But this means that people with disabilities were denied access to their support personnel (Office of Civil Rights, 2020A; Communication First, 2020). One of many negative results of this policy was that non-speaking autistic people without their supporters were assigned lower scores on the neurological part of the assessment, because doctors did not realize that they had always been non-speaking. Problems like this (both before and during the Covid pandemic) led to the development of other ways of measuring likelihood of survival, that take into account previous levels of functioning. The most widely used is the Modified Sequential Organ Failure scale (MSOFA); there others as well. Nevertheless, the original SOFA still remains in use in many CSCs.
The harder ethical problem is that, during a catastrophic event like the Covid pandemic, a person responsible for triage will almost inevitably end up in a situation where several people have the same “objective” scores, but only one can be treated. And this is where explicit and implicit biases come vigorously into play. Assuming identical scores, do you treat the younger person or the older one? A generally healthy middle aged white person or a middle aged black person with diabetes brought on by a lifetime of limited food choices? A neurotypical person or an autistic person? Exhausted, emotionally drained, and under intense time pressure, it is hard for physicians and nurses to resist choosing the person they personally see as most worthy of saving. So far as I know, no CSC has stated that people with autism should be denied care. But the fact remains that autism is highly stigmatized in the United States (Zuckerman, 2018; Jones, 2021). Furthermore, research has shown that most American physicians actually have very little objective information about autism (Zerbo, 2015; McCormack, 2020), so there is no reason to suppose that they are less subject to bias than other people (Como, 2020). I think it would be safe to say that at least some of the many autistic deaths due to Covid over the past eighteen months have been the result of medical practitioners deciding autistic lives were less important than other lives.
To alleviate this kind of bias, many CSCs also stress the importance of saving those with the greatest number of “life-years” ahead of them. The Boards that draw up Crisis Standards of Care set up criteria for determining who is most likely to survive for one year, five years, ten years after hospitalization—and then prioritize those who will live longer. The “life-years” approach, however, involves its own set of biases. Even though most CSCs now forbid basing triage decisions on “categorical exclusions,” the fact is that various categories of people tend on average to have shorter life-spans: people who are already elderly, members of ethnic and racial minorities, the poor, and, of course, people with disabilities. But it is important to remember that individual members of these groups can actually have very long lifespans—an eighty-year-old patient, if given the proper treatment, may well live to be 108.
In the heat of the moment, individual doctors or triage committees may well decide that someone in one of these groups is unlikely to survive for long simply because they belong to the group. So the “life-years” approach by no means guarantees equity in care. It is essential not to let categorical exclusions subtly slip into CSCs under the guise of life-span priorities (Wakschlag, 2020):
Generalized assumptions must be avoided and doctors must instead focus on the most current and best available objective medical evidence available to determine an individual patient’s ability to respond to treatment. Doctors must not assume that any specific diagnosis or disability automatically indicates a poor prognosis for near-term survival or an inability to respond to treatment: people with disabilities regularly outlive the prognoses doctors ascribe to them, often by decades. There must be a thorough, individualized review of each patient.
As I write this, it’s been announced that 1 out of every 500 Americans had died of Covid-19. I mourn for all of them. But how many autistic people have died? The statistics aren’t fully there, but there are some indications that death has come for them even more rapidly than it has for the population as a whole. Many autistic people live in group homes and other congregate care settings, and this has proven deadly for them (Landes, 2021). Many autistic people live in poverty, and we know that poor people are more likely to die of Covid than the better-off (Tan, 2021). But how many have made it to the hospital and then been denied the care to which they were entitled? How many have been given inaccurate SOFA scores? How many, when their scores were the same as other people, were given lower priority because of physician assumptions about “quality of life”? How many have been cut off from treatment because of inaccurate assumptions about the number of “life-years” they can expect?
How many should I mourn for?
REFERENCES
American Medical Association. (2020). Crisis standards of care: Guidance from the AMA Code of Medical Ethics. https://www.ama-assn.org/delivering-care/ethics/crisis-standards-care-guidance-ama-code-medical-ethics.
American Psychiatric Association Committee on the Psychiatric Dimensions of Disaster and Covid-19. (2020). Guidance Document: Moral Injury During the Covid-19 Pandemic. https://www.psychiatry.org/psychiatrists/covid-19-coronavirus.
Auriemma, Katherine, Moninaro, Ashli, Houtrow, Amy, Persad, Govind, White, Douglas, & Halpern, Scott. (2020). Eliminating Categorical Exclusion Criteria in Crisis Standards of Care Frameworks. American Journal of Bioethics 20:7, 28-36. https://www.tandfonline.com/doi/full/10.1080/15265161.2020.1764141.
Bagenstos, Samuel. (2020). Who Gets the Ventilator? Disability Discrimination in
COVID-19 Medical-Rationing Protocols. Yale Law Journal, Forum: May 27, 2020. https://www.yalelawjournal.org/forum/who-gets-the-ventilator.
Brubaker, Harold. (2020, April 8). Activists say Pennsylvania’s critical-care guidelines discriminate against the disabled for COVID-19 care. The Philadelphia Inquirer. https://www.inquirer.com/business/health/disability-rights-pennsylvania-complaint-triage-guidelines-covid-19-20200408.html.
Centers for Disease Control and Prevention. (2021). What To Do If You Are Sick. https://www.cdc.gov/coronavirus/2019-ncov/if-you-are-sick/steps-when-sick.html.
Committee on the Psychiatric Dimensions of Disaster and Covid-19 (2020). “Moral Injury During the Covid-19 Pandemic.” American Psychiatric Association Committee on the Psychiatric Dimensions of Disaster and Covid-19. https://www.psychiatry.org/psychiatrists/covid-19-coronavirus
Communication First. (2020). COVID-19 Communication Rights Toolkit. https://communicationfirst.org/covid-19/.
Como, Dominique, Florindez, Lucia, Tran, Christine, Cermak, Sharon, & Duker, Leah. (2020). Examining Unconscious Bias Embedded in Provider Language Regarding Children with Autism. Nursing & Health Sciences 22:2, 197-204.
Anonymous. (2021, February 10). Examining How Crisis Standards of Care May Lead to Intersectional Medical Discrimination Against Covid-19 Patients. https://autisticadvocacy.org/wp-content/uploads/2021/02/FINAL-Intersectional-Guide-Crisis-Care-2-10-21.pdf.
Hotez, Emily (2021). One of Us: Combating Stigma Against People with Intellectual and Developmental Disabilities. Association for Psychological Science Observer, 34:5, 39-44. https://www.psychologicalscience.org/observer/one-of-us.
Jones, Desiree, Debrander, Kilee, & Sasson, Noah. (2021). Effects of autism acceptance training on explicit and implicit biases toward autism. Autism, 25:5, 1246-61.
Justice in Aging (2020). Combatting Discriminatory Crisis Standards of Care. https://justiceinaging.org/wp-content/uploads/2020/09/Combatting-Discriminatory-Crisis-Standards-of-Care.pdf.
Landes, Scott, Turk, Margaret, & Ervin, David. (2021). COVID-19 case-fatality disparities among people with intellectual and developmental disabilities: Evidence from 12 US jurisdictions. Disability and Health Journal 14:5. https://www.sciencedirect.com/science/article/abs/pii/S1936657421000625.
McCormack, Gerard, Dillon, Alison, Healy, Olive, Walsh, Chloe, & Lydon, Sinead. (2020). Primary Care Physicians’ Knowledge of Autism and Evidence-Based Interventions for Autism: A Systematic Review. Review Journal of Autism and Developmental Disorders 7:3, 226-241.
Ne’eman, Ari. (2020, March 23). ‘I Will Not Apologize for My Needs’: Even in a crisis, doctors should not abandon the principle of nondiscrimination. The New York Times.
Ne-eman, Ari. (2020, April 10). When It Comes to Rationing, Disability Rights Law Prohibits More than Prejudice. The Hasting Center Bioethics Forum. https://www.thehastingscenter.org/when-it-comes-to-rationing-disability-rights-law-prohibits-more-than-prejudice/.
Ne’eman, Ari, Stein, Michael, Berger, Zackary, & Dorfman, Doron. (2021, forthcoming). The Treatment of Disability under Crisis Standards of Care: An Empirical and Normative Analysis of Change over Time during COVID-19. Journal of Health Politics, Policy, and Law 46:5, 831-860. https://pubmed.ncbi.nlm.nih.gov/33769474/.
Nicolaidis, Christina, Raymaker, Dora, Askenazy, Elesia, McDonald, Katherine, Dern, Sebastien, Baggs, Amelia, Kapp, Steven, Weiner, Michael, & Boisclair, Cody. (2015) “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism 19:7, 824-31.
Office of Civil Rights, HHS. (2020A). OCR Resolves Complaints after State of Connecticut and Private Hospital Safeguard the Rights of Persons with Disabilities to Have Reasonable Access to Support Persons in Hospital Settings During COVID-19. U.S. Department of Health and Human Services, Office of Civil Rights. https://public3.pagefreezer.com/content/HHS.gov/31-12-2020T08:51/https://www.hhs.gov/about/news/2020/06/09/ocr-resolves-complaints-after-state-connecticut-private-hospital-safeguard-rights-persons.html.
Office of Civil Rights, HHS (2020B). OCR Resolves Complaint with Utah After it Revised Crisis Standards of Care to Protect Against Age and Disability Discrimination. U.S. Department of Health and Human Services, Office of Civil Rights. https://public3.pagefreezer.com/content/HHS.gov/31-12-2020T08:51/https://www.hhs.gov/about/news/2020/08/20/ocr-resolves-complaint-with-utah-after-revised-crisis-standards-of-care-to-protect-against-age-disability-discrimination.html
Schwartz, Karyn & Tolbert, Jennifer. (2020, October 8). Limitations of the Program for Uninsured COVID-19 Patients Raise Concerns. Kaiser Family Foundation. https://www.kff.org/policy-watch/limitations-of-the-program-for-uninsured-covid-19-patients-raise-concerns/.
Tan, Annabel, Hinman, Jessica, & Abdel Magid, Hoda. (2021, May 3). Association Between Income Inequality and County-Level COVID-19 Cases and Deaths in the US. JAMA Network Open, 4:5. https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2779417.
Vogan, Vanessa, Lake, Johanna, Tint, Ami, Weiss, Jonathan, & Lunsky, Yona. (2017). Tracking health care service use and the experiences of adults with autism spectrum disorder without intellectual disability: a longitudinal study of service rates, barriers and satisfaction. Disability and Health Journal 10:2, 264-70. https://www.sciencedirect.com/science/article/abs/pii/S1936657416301753.
Wakschlag, Shira, Mathis, Jennifer, Bagenstos, Sam, Barkoff, Alison, Costanzo, Cathy, Crane, Samantha, & Center, Claudia. (2020, April). Applying HHS’s Guidance for States and Health Care Providers on Avoiding Disability-Based Discrimination in Treatment Rationing. https://thearc.org/wp-content/uploads/2020/04/Guidance-to-States-Hospitals_FINAL.pdf.
Zerbo, Ousenny, Massolo, Maria, Qian, Yinge, & Croen, Lisa. (2015). A Study of Physician Knowledge and Experience with Autism in Adults in a Large Integrated Healthcare System. Journal of Autism and Developmental Disorders 45:12, 4002-14
Zuckerman, Katharine, Lindly, Olivia, Reyes, Nuri, Chavez, Alison, Cobian, Maritza, Macias, Kristy, Reynolds, Ann, & Smith, Kathryn. (2018). Parent Perceptions of Autism Spectrum Disorder Stigma: Measure Validation and Associations in a Multi-Site Sample. Journal of Autism and Developmental Disorders 48:9, 3199-3209.
Just a test to see if the social media links I set up work.
This one has taken me many months. The topic is employment/unemployment, wealth and poverty among autistic people in the U.S. Especially hard to write because my autistic daughter was struggling to find work throughout the spring. But Yay! She has a good job now and I have finished the chapter. Excerpts will go up on this site shortly.
I’m working on my chapter on employment and housing right now, and I’ve learned that “likeability” is a real Human Resources thing. People interviewing for jobs actually get rated on “likeability”–the extent to which the people interviewing them are attracted to them. According to an article in the Wall Street Journal, this is even worse in video conferencing. Apparently, during video interviews, likeability has more impact than a candidate’s persuasive arguments. And of course during the pandemic it’s almost all video interviews.
How can this be anything but discrimination against people with autism who, by definition, struggle with social interaction?