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Monday, July 6, 2020

Most States Don't Meet IDEA Requirements

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

During the 2018-19 academic year, 21 states met the requirements of the Individuals with Disabilities Education Act for students ages 3 to 21.

From the Department of Education:
The U.S. Department of Education’s Office of Special Education and Rehabilitative Services released State determinations on implementation of the Individuals with Disabilities Education Act (IDEA) for Part B and Part C for fiscal year 2018. The 2004 Amendments to the IDEA require each State to develop a State Performance Plan (SPP) and Annual Performance Report (APR) that evaluates the State’s efforts to implement the requirements and purposes of the IDEA, and describes how the State will improve its implementation. The Part B SPP/APR and Part C SPP/APR include Indicators that measure child and family results, and other indicators that measure compliance with the requirements of the IDEA. Since 2015, the Part B SPP/APR and Part C SPP/APR have included a State Systemic Improvement Plan through which each State focuses its efforts on improving a State-selected child or family outcome.
Following is a list of each State’s performance in meeting the requirements of IDEA Part B, which serves students with disabilities, ages 3 through 21:
 MEETS REQUIREMENTS Arkansas Florida Georgia Illinois Kansas Kentucky Maine Massachusetts Minnesota Missouri New Hampshire New Jersey North Carolina North Dakota Oklahoma Pennsylvania Republic of the Marshall Islands South Dakota Virginia West Virginia Wisconsin Wyoming
NEEDS ASSISTANCE (one year) Arizona Commonwealth of Northern Mariana Islands Connecticut Indiana Montana Nebraska Ohio
NEEDS ASSISTANCE (two or more consecutive years) Alabama Alaska American Samoa District of Columbia California Colorado Delaware Federated States of Micronesia Guam Hawaii Iowa Idaho Louisiana Maryland Michigan Mississippi New Mexico Nevada Oregon Puerto Rico Rhode Island South Carolina Tennessee Texas Utah Washington
NEEDS INTERVENTION (one year) New York Virgin Islands Vermont
NEEDS INTERVENTION (three years) Palau
NEEDS INTERVENTION (nine consecutive years) Bureau of Indian Education

Sunday, July 5, 2020

Race, Autism, and the Police

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]

[i] Tim Waller, “Arrest of Autistic Man Prompts Call for Police Training,” WYFF, January 2, 2015. Online:[ii] David Dennis, Jr., “My Son Is Black. With Autism. And I’m Scared Of What The Police Will Do To Him,” Medium, December 4, 2014. Online: .

Jackie Spinner at WP:
I only knew that being different and black in America means that my son is vulnerable if stopped by police. A 2016 report, analyzing incidents from 2013 to 2015, found that nearly half the people killed by police had some sort of disability. A 2019 study of police-involved deaths found that 1 in every 1,000 black men is at risk of being killed by law enforcement.

My son’s behavior can be unpredictable. He doesn’t read social cues, and he doesn’t really understand authority. When he makes a mistake, he often starts shouting. After he calms down, he always apologizes — almost immediately — for “causing a little bit of trouble.”

I took my son to the police station as a kindergartner because I wanted officers to understand more about autism and how he might react if they confronted him. Autistic people may be extra sensitive to light, sound and touch, or have difficulty following commands — especially if they are yelled. So to officers, their behavior can appear suspicious or aggressive. Confrontations between police and people with autism often escalate quickly. Police need better, and mandatory, training about people who are “different,” people like McClain or my son. Some departments use virtual reality programs to simulate interactions with someone who is autistic. A Florida-based organization that certifies theme parks as autism-friendly also provides training for first responders.

A post from 2014:

A number of posts have discussed encounters between police and ASD people. The Ferguson shooting and the Garner incident in New York have many African American parents on edge. At Medium, David Dennis, Jr. writes:

Just this week, one of our therapists sent a behavioral plan for Langston, saying that if he didn’t follow spoken instructions then we should physically guide him to do what we want from him. But his therapists are White. And as incredible and helpful as they’ve been, they don’t live with the reality that we do. Our son needs to know how to follow verbal instructions because if he doesn’t, a cop will find that as justification for ending my boy’s life. While we have to modify our language and communication to better convey our needs to our son and build his social skills, him knowing how follow explicit police instructions is non-negotiable. It’s life and death. I need him to know these things.
I keep thinking about what would happen if a cop is wearing gloves and puts his hands on my son. And my son pulls away because the texture of the gloves bother him. Or if my son just doesn’t like being touched by strangers. Or doesn’t react well when people point or raise their voices at him. Right now, the best way to get Langston to follow instructions is to get at eye level with him and explain very calmly what we need from him. What if that’ll always be the best way to communicate with him and a cop sees my son’s inability to process orders as an act of disobedience. 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?

Saturday, July 4, 2020

HHS Does Not Require Congregate Setting to Report COVID Data

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.

From the American Civil Liberties Union:
It took the Department of Health and Human Services (HHS) months after declaring COVID-19 a national emergency to start requiring nursing homes to report deaths and infections despite ample evidence that these facilities were at high risk. Even now, nursing homes are only required to report data from May 8 onward. HHS doesn’t require other congregate settings for people with disabilities, such as psychiatric homes, to report at all. This lack of transparency, in addition to the government’s systemic mismanagement of nursing homes and other congregate settings, has helped create the crisis we see today.
People with disabilities and the people who work with them deserve to be counted. States can and should modify current policies to collect and publicize vital data while maintaining privacy standards. Last week, the ACLU filed a petition calling on HHS to do its job to address this crisis — and its job includes collecting and reporting full data from facilities that receive Medicaid or Medicare dollars.

Friday, July 3, 2020

Anti-vaxxers and Anti-maskers Are a Menace

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.

Mackenzie Mays at Politico:
Anti-vaxxers are morphing into the anti-anything movement. It’s clear to me that some of them are going to have their children show up to schools without masks to prove their point and poke the bear,” California Assembly Education Chair Patrick O’Donnell (D-Long Beach) said in an interview. “I don't know what authority schools will have.”
At a June legislative hearing in Sacramento on school reopening, parents wore shirts that said “Make pharma liable again” and “I don’t want a flu shot!” They voiced concerns about unfounded impacts of masks on children being able to breathe and the potential for a Covid-19 vaccine requirement down the road.
Christina Hildebrand, president and founder of A Voice for Choice, a California organization that opposes childhood vaccine requirements, said parents are against mask rules in school because of potential for detrimental social-emotional and educational impacts, like an “ingrained fear of contagion" and an inability to socialize.
Anti-vaccine activists joined conservatives and small business owners in protests over stay-at-home orders designed to curb the spread of the virus. They have also been involved in the harassment of public health officials whose job is to enforce those orders.
Despite no proof of any serious harm caused by masks for the general public, that narrative has continued in the form of arguments for constitutional rights across the nation. Footage of a public hearing regarding a mask mandate in Florida went viral last week after Palm Beach County residents argued that masks are “killing people.”

Thursday, July 2, 2020

Invisible Disabilities and Policing the Boundaries

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One challenge is that autism is an "invisible disability," which does not have obvious physical markers.  

Andrew Pulrang at Forbes:
Deciding who is and isn’t disabled, who does and doesn’t deserve accommodation, is complicated. Most efforts to distinguish fakers from “real” disabled people usually do more harm than good.
There is sometimes real reason for skepticism. One of the newest weapons in the ongoing politicization of Covid-19 is the trend of people seeking moral and legal cover for their refusal to wear a face mask, by claiming that they can’t wear them because of an underlying health condition or disability.
At the same time, disabled people also know what it’s like to have our disabilities doubted, our claims questioned, and our need for accommodations dismissed. We also know the humiliation of being diagnosed on the fly, based only on our appearance and bystanders’ assumptions. Sometimes we even do it to each other, casting disdain on people with disabilities different from our own.
One of the most common forms of everyday ableism, and one of the worst impulses within the disability community itself, is the instinct ... for some even the passion … for guarding the boundaries of disability. This tendency is heavily fed by sensationalist news, entertainment, and social media. Stories with nothing to them at all, and those with a kernel of truth but blown out of proportion, are repeatedly pressed into a toxic narrative of disability and dishonesty.

Wednesday, July 1, 2020

COVID-19 and Quality of Life

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.

People with autism and other disabilities have faced discrimination in organ transplants.  Now they face discrimination in the availability of ventilators.

AMA Journal of Ethics, Ethics Talk Podcast Transcript - Disability Community Perspectives on COVID-19 Episode: Disability Community Perspectives on COVID-19 Host: Tim Hoff Guests: Alice Wong and Joe Stramondo, PhD
HOFF: The criteria according to which scare resource allocation decisions should be made almost always include a reference to “quality of life.” Because quality of life is subjective, however, and because we’re so often wrong, as the data suggests, about how we judge other people’s satisfaction with their own lives, quality of life-based criteria can be hard to apply uniformly and equitably and justly. Many have argued in various ways that using quality of life as a criterion is the first step on the slide down the slippery slope to eugenics, and there are very good reasons to take the merits of these arguments seriously. In fact, at least some parts of the federal government seem to be doing so. For example, the Office of Civil Rights in the U.S. Department of Health and Human Services reminds us—and I’m just going to quote this here for the sake of clarity—that, “Persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgements about a person’s relative ‘worth’ based on the presence or absence of disabilities or age. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient and his or her circumstances based on the best available objective medical evidence.”
WONG: And you know, I think, again, when we think about quality of life, I think all of us need to really question and unpack that term. Because I think for a lot of people, maybe listeners of your podcast, may think that quality of life means a life that’s without suffering or pain or without impairment or one that is independent. And you know, there’s a lot of values that are underlying there of what we consider normative bodies and functioning. And I think so much of this flies in the face of the huge range of human variation and the way that people thrive and adapt with the bodies we have and with the environments that we’re in. And we also can’t separate what’s different about our bodies and the society that we live in, the communities that we’re a part of. I believe that if people had access to the supports and technology that they need, and if people are treated with respect and accepted as they are, quality of life would look very different from the very strictly pathological lens.

STRAMONDO: I think that Alice is spot on in her discussion of quality of life and sort of the intersection between disability and one’s environment as being sort of the thing that determines quality of life. It’s not just about the presence or absence of disability itself. But looking at the language used in the complaint, I do have something of a concern in that it’s prohibiting explicit kinds of discrimination that might be sort of written into guidelines. But the fact of the matter is, a lot of times, the discrimination that might be going on when you’re talking about triage isn’t this overt, right? And so, that’s my real worry here. For instance, the best available medical evidence is what we’re supposed to make the determination based on. Well, the problem with language around the best available medical evidence is that a lot of times, people smuggle in quality of life considerations by talking about health, right, in that they equate quality of life with health, right?
Alice was just talking about how there’s this assumption that you need certain things to be part of your life in order to have quality of life. And for many, many people, health is one of those things. And so, when you write guidelines that direct physicians and triage committees to look at the best available medical evidence, that’s a vague term, right? That’s a very, very vague set of terms. Does this allow a triage committee or a state writing a set of guidelines to consider someone’s health status when considering whether or not they get life-saving treatment? And that’s, in some circumstances or by some interpretations, a real problem. If you are talking about health status in a way that what you mean is well, I’m going to consider how responsive this person will be to this treatment and whether or not this treatment will be futile for this person, then of course, that’s definitely some objective medical evidence that you want to consider when doing triage. But if what you’re saying when you talk about health status is something more along the lines of well, I’m going to prioritize this person who, after the treatment, will be healthier than this other patient who still will be disabled and unhealthy after the treatment, then that’s just sort of talking about quality of life considerations just using different words.

Tuesday, June 30, 2020

COVID-19 and 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.

Group homes in [Massachusetts] were locked down for close to three months and families were only allowed to video chat with their adult children in order to try to keep the novel coronavirus out of these “congregate living” facilities where individuals are living together in close quarters and sickness can spread more quickly.
Individuals with autism and other disabilities may be part of the population who gets sicker from the novel coronavirus than the general population. They often have what’s known as “co-morbid” medical conditions that can make them more susceptible to illness, including COVID-19. Ned gets seizures, and his parents say he doesn’t register a fever so temperature checks may not be a reliable way to screen him for COVID-19.
The story focuses on an autistic man named Ned Hubbard, who has two housemates who got COVID.
Amego, the facility which operates Ned's home, also operates dozens of other residential facilities in Massachusetts.
Amego’s President and CEO, John Randall, says despite equipping staff with PPE and taking numerous precautions to date 46 Amego residents and 71 staff have tested positive for the virus.
Statewide, the Department of Developmental Services tells Boston 25 that 1,575 adult residents have tested positive as of early June and 98 adults have died.

It’s not just adults.

Although the Department of Elementary and Secondary Education (DESE) could not tell us how many children in the state’s group homes contracted the novel coronavirus, Boston 25 News has learned one facility, the New England Center for Children in Southborough, had 15 of their students and 19 of their staff tested positive.
Buried lede:
To date, more than 1,800 staff members at group homes in the state have tested positive for COVID-19 and three staff members have died.