By Liz Essley Whyte, Center for Public Integrity/The Daily Beast
An analysis by the Center for Public Integrity reveals that policies in at least 25 U.S. states have provisions that could de-prioritize health care for people with disabilities if cases of COVID-19 continue to ravage hospitals’ supplies.
Disability advocates have filed formal complaints in several states for their policies on who should get ventilators if hospitals run out. These policies take into account patients’ expected lifespan; need for resources, such as home oxygen; or specific diagnoses, such as dementia. Some policies even permit hospitals to take ventilators away from patients who use them as breathing aids in everyday life, and give the ventilators to other patients.
Twenty-five states have similar provisions in their rationing policies — and many other states either don’t have policies, or aren’t releasing them.
“There is a long history of people with disabilities being devalued by the medical system. That’s why we have civil rights laws,” said disability-rights activist Ari Ne’eman. “We don’t have an exception in our country’s civil rights laws for clinical judgment. We don’t take it on trust.”
By NCDJ board member Amy Silverman, for ProPublica/Arizona Daily Star
Advocates for people with intellectual disabilities are concerned that people with Down syndrome, cerebral palsy, autism and other such conditions will be denied access to lifesaving medical treatment as the COVID-19 outbreak spreads across the country.
As Silverman reports, several disability advocacy organizations filed complaints this week with the civil rights division of the U.S. Department of Health and Human Services, asking the federal government to clarify provisions of the disaster preparedness plans for the states of Washington and Alabama.
Some state plans — including Alabama’s — make clear that people with cognitive issues are a lower priority for lifesaving treatment. Alabama’s plan reads that “persons with severe mental retardation, advanced dementia or severe traumatic brain injury may be poor candidates for ventilator support.”
NCDJ board member Becky Curran Kekula appeared on this morning talk show to discuss tips for treating people with disabilities fairly and respectfully. Part of the discussion focused on the fact that since 70% of disabilities are invisible, many people are nervous to either admit they have a disability, or to speak about someone who may have a disability that isn’t immediately apparent.
Also featured are some of Becky’s favorite tips for working remotely — a particularly relevant topic in the midst of the coronavirus pandemic.
The Florida Senate just unanimously passed a House bill that ensures people with disabilities can receive organ transplants without fear of discrimination.
Jacksonville Republican Rep. Jason Fischer proposed the bill, claiming that transplant facilitators don’t realize that protections against discrimination covered by The Americans with Disabilities Act also applies to them.
Local roboticist teams adapt interactive toys for easier manipulation
By: ASU Now
Two local robotics teams just made the holidays more accessible for 20 local children who face challenges manipulating interactive toys.
Arizona State University’s Desert WAVE and a high school team from Chandler, Arizona, called Degrees of Freedom, joined forces last weekend at CREATE at the Arizona Science Center, to “hack” toys for children with disabilities. Both teams were founded by the local Si Se Puede Foundation.
“When I look at the kids that we are able to help, I see just that: kids,” said Desert WAVE member Jessica Dirks, an ASU sophomore with a double major in human systems engineering and robotics. “They have hopes and dreams and love toys just as much as I do. The only thing separating us is the size of a switch — and that is something I am confident and capable of changing for these fellow dreamers.”
While commercially adapted toys exist for children with physical limitations, they can cost up to four times the retail cost of similar, off-the-shelf toys. The adaptations made during the event cost less than $5 in parts and required basic electrical skills, like soldering, provided by the two teams.
The modified toys help children develop functional skills like problem-solving, offer a foundation for socialization, and perhaps most importantly, have fun with toys.
“My favorite moment of this event was right after I finished adapting my first toy,” said Khushi Parikh, a sophomore at Gilbert Classical Academy and part of the Degrees of Freedom team.
WHEN SHANE BURCAW flies on an airplane, he brings along a customized gel cushion, a car seat, and about 10 pieces of memory foam. The whole arsenal costs around $1,000, but for Burcaw it’s a necessity.
The 27-year-old author and speaker — who, alongside his fiancée, Hannah Aylward, is one half of the YouTube duo Squirmy and Grubs — has spinal muscular atrophy, a genetic disorder that affects motor neurons and causes muscle wasting and weakness. The disorder contorted his limbs and he has used a wheelchair for mobility since he was 2 years old. Today, he uses a motorized wheelchair custom-fitted to his diminutive, 65-lb. frame, but to board an airplane, he’s required to give it up. Instead, Aylward must carry Burcaw onto the plane, and from there, transfer him into a child’s car seat, which provides limited support and does not fit his body (thus, the foam).
“When you hear about the injuries and the discomfort and the embarrassment that wheelchair users have faced when flying,” Burcaw said, “it becomes pretty obvious that they’re not being treated in a very humane way with these rules.”
Indeed, regulations prohibit passengers from sitting in their own wheelchairs on planes, and, as a result, 29 years after the passage of the Americans with Disabilities Act (ADA), which dramatically increased American wheelchair users’ access to buses, trains, and other essential 21st century infrastructure, airplanes remain stubbornly inaccessible. For many wheelchair users, the experience of flying is stressful, painful, and sometimes humiliating. For some, it is simply impossible.
Emily Ladau, a disability rights activist, writer, and public speaker, does deep-breathing exercises to manage her anxiety as airport staff take her wheelchair away. She likens the experience to watching someone walk off with her legs. Things aren’t much better onboard. “Airplane seats are designed for the quote-unquote average person,” Ladau said. “I’m nowhere near the quote-unquote average person.” At 4’6”, she does not fit the seat easily. Her legs dangle. She cannot align her posture. “It’s very uncomfortable,” she said.
“You’re basically giving disabled people yet another reason to feel like society wants us shut into our homes and doesn’t want us going anywhere.”
When I’m giving disability issues talks, I’m often asked “Because of the ADA and other laws, are things getting better?” My answer is some version of “yes and no”. Here’s this week’s version:
Unsafe situation on nearby corner of busy street
The mile long reconstruction of an arterial road near my house just finished. Drivers are breathing a sigh of relief about not having to drive a couple extra miles to get around the construction. I walked part of the reconstructed sidewalks with a friend who used to teach blind kids and she pointed out that on one corner the truncated domes (bumps) were mis-applied. They’ll launch blind people kiddy-cornered from the northwest corner of the intersection to the southeast corner. I immediately notified a staff member in the city’s engineering department and she replied that she’d turned it over to the project manager and would get back to me with an update when available. Being concerned that soon the snow will fly and it won’t be able to be fixed until next spring or summer, I notified the city manager. He has not gotten back to me yet.
When you reach the age I have, you start checking the obituaries as regularly as you have that first morning cup of coffee. Recently the local paper switched their provider of obituaries and they’re no longer accessible to my screen reader. When I contacted the local paper’s representative, they gave me the email of the help desk of the new provider. I emailed them and offered to work with them to fix the problem. No word back yet. My work around is to ask a sighted friend who reads the paper to let me know if anyone she knows is listed in the obits. Not the same, but better than nothing.
Inaccessible library app:
The public library is touting an app, Libby where one can download audio and e-books on your iPhone. I downloaded it and opened it to a “secret” message to Voiceover users (meaning it wasn’t printed on the screen for sighted people to see, but just audio) that the app wasn’t accessible to us and we should use Overdrive app instead. After several emails and phone calls to the public library, they raised the complaint with the library system who will raise it with the vendor. On the company’s website I read that they’re “working hard” to make Libby accessible, no timeline given. I put a comment on the CEO’s blog since I couldn’t find his email, but have no way of knowing if it was read since I haven’t heard back. There’s plenty of responsibility to be spread around on this one: e.g. why did the company knowingly market an inaccessible app? Why did the library system buy an inaccessible product?
Disability emoji’s launched in version 13.2 for iPhones and iPads:
For over a year, we’ve been hearing that some disability emoji were coming soon to iPhones and iPads. They have arrived, including persons with “cochlear implants” “probing canes”, “guide dog” and “service dog”. I’ve never heard a long cane, also called a white cane, called a “probing cane”. Others in the disability community point out that many disabilities including cognitive disabilities don’t get an emoji. I also notice some of the other new emoji give the person a high status profession “nonbinary judge” or such, but we just get a disability. Am I happy? A little! (Insert emoji of slightly smiling face in your mind)
I was reading Kushner’s excellent Nine Essential Things I’ve Learned about Life. He has a theology of “not yet” that I really like. Are things all better on the accessibility front? Not yet, but that may happen someday if we all keep plugging away on it.
Katherine Schneider, Ph.D.
Senior Psychologist, Emerita
University of Wisconsin-Eau Claire
Author of Occupying Aging: Delights, Disabilities and Daily Life, To the Left of Inspiration: Adventures in Living with Disabilities and a children’s book Your Treasure Hunt: Disabilities and Finding Your Gold
“Do you support Medicare For All? Why not? Don’t you believe everyone has a right to health care?”
Your coworker says:
“I think everyone should have healthcare, but how do we pay for it? And even if we can pay for it, how could we ever hope to pass such a huge and controversial plan?”
Meanwhile, your aunt wants to know:
“Do you really want the government in charge of your healthcare? And Is it fair that hardworking, responsible people should have to pay the medical bills for people who don’t even work? I don’t mean you of course …”
These are stereotypes, but nowadays they kind of ring true. They’re the sentiments that every disabled person even slightly engaged in the healthcare debate hears from every corner. That, and accusations of being a shill for “the other side” if you dare to ask critical questions and raise specific concerns as a disabled person. There’s no escape from it either, especially online. Now that 2020 campaigns are underway, you can’t plant a crutch or turn a wheelchair without running into someone’s passionate beliefs about healthcare. And they want you to believe, too. They’ll even point to your disability as a reason why you should support their position on healthcare.
The fact is that people with disabilities do have unique and important priorities that aren’t always addressed in healthcare plans. For people with disabilities, they matter more than ideology, poll-tested rhetoric, or political affiliations. This is the substance of the healthcare debate for the disability community.
Despite the passage of the ADA and accessibility lawsuits filed against Wells Fargo, Morgan Stanley, and other prominent investment management services, people with disabilities encounter frustrating obstacles in the banking world. Inaccessible websites and other digital barriers impede the efforts of those with disabilities to do even the most mundane tasks, such as check an account balance or read credit statements at the end of the month.
Albert Rizzi gave up on trying to manage his nest egg because as a blind person, he encountered digital barriers constantly. Many of the websites, mobile apps, PDFs and software programs he needed were not accessible. Sometimes, they just didn’t work.
So Mr. Rizzi, 55, the founder of My Blind Spot, an accessibility advocacy group in New York, filed a federal lawsuit in April 2018 against Morgan Stanley, the firm he uses to manage his personal retirement accounts.
Mr. Rizzi’s suit accused the bank of violating the Americans With Disabilities Act by “denying access to its websites to individuals with disabilities who are visually impaired” and who require screen-reader software to access digital content. Mr. Rizzi also cited the bank for not having an accessibility website or hotline. The case, which sought about $9 million in damages, was settled last summer, his lawyer, Lambros Lambrou, said.
In a separate case, Wells Fargo in 2011 settled an investigation by the Justice Department alleging ADA violations because the bank failed to accept what is known as video relay services, or video phone calls, from deaf customers. The settlement required the bank to pay $16 million to some account holders and remedy a variety of accessibility problems.
After a recent legislative session ended at 2 a.m., Rep. Jennifer Longdon, D-Phoenix, a wheelchair user and NCDJ board member, had no choice but to roll 1.5 miles home from the Capitol. Longdon’s difficulty getting home illustrates the lack of accessible public transit options in Phoenix. How can people who rely on public transportation be productive or work late, if needed, in a city that doesn’t have a 24-hour bus system?
Several colleagues and a police officer accompanied Longdon on her roll home, but, as Longdon pointed out, many people with disabilities wouldn’t be able to access the kind of help that she [as an elected state representative] could.
Click here to read more about this news story in the Arizona Republic.
Above: Rep. Jennifer Longdon thanks Phoenix police and tells her colleagues about her travails getting home on May 24, 2019. (Video: Robbie Sherwood / azcentral.com)