Down syndrome

State Policies May Send People with Disabilities to the Back of the Line for Ventilators

Posted on April 12, 2020
Vestavia Hills, Alabama, resident Matthew Foster, who has Down syndrome, holds a sign reading: "I am ventilator worthy! I want the right to live"
Vestavia Hills, Alabama, resident Matthew Foster, who has Down syndrome, worries he could be in the back of the line for a ventilator if he contracts severe COVID-19. Half of states have policies with the type of provisions that advocates say discriminate against people with disabilities. (Photo Courtesy of Susan Ellis)

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.”

Read the full article here: https://publicintegrity.org/health/coronavirus-and-inequality/state-policies-may-send-people-with-disabilities-to-the-back-of-the-line-for-ventilators/

From NCDJ Board Member Amy Silverman: People With Intellectual Disabilities May Be Denied Lifesaving Care Under These Plans as Coronavirus Spreads

Posted on April 3, 2020
A medical assistant and nurse check paperwork during a drive-up COVID-19 screening in Seattle on March 17. (Karen Ducey/Getty Images)
A medical assistant and nurse check paperwork during a drive-up COVID-19 screening in Seattle on March 17. (Karen Ducey/Getty Images)

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.”

Read the full article here: https://www.propublica.org/article/people-with-intellectual-disabilities-may-be-denied-lifesaving-care-under-these-plans-as-coronavirus-spreads?fbclid=IwAR3p48098GDg_d5LwkvCEblZoPBfrFMcScTYVceoqRDy_Zh_RxnqA27gLg8

A Mom Laments Limited Employment Prospects For Daughter With Down Syndrome

Posted on January 2, 2020
Sophie Silverman dancing ballet.
Amy Silverman’s daughter Sophie, who has Down syndrome, wants to be a dance teacher. (Courtesy Amy Silverman)

 

By Amy Silverman, Here & Now

Amy Silverman‘s daughter Sophie wants to be a dance teacher. But Sophie has Down syndrome and the opportunities for meaningful employment for people with intellectual disabilities are minimal.

This segment aired on January 1, 2020.

Listen to the radio piece here: https://www.wbur.org/hereandnow/2020/01/01/employment-prospects-intellectual-disabilities

Learning to Unsay the R-Word

Posted on November 14, 2019

Amy Silverman on Changing the Way a Culture Speaks

Photo depicting a blank chalkboard with an eraser and piece of chalk on its ledge.

By Literary Hub

As we drove to her high school one morning not long ago, I asked my daughter Sophie what words she’d use to describe herself.

“Cute, funny, smart, hard working,” she says.

“Anything else?”

“Lovable.” Literary Hub

Sophie did not use the word retarded, though some people might. I’ve never heard her say it. She’s never heard me say it, either. I don’t use it. Anymore.

To be totally honest, I miss the word.

I imagine it’s a little like how a smoker feels once she’s quit. Relieved to be rid of cigarettes, disgusted that she ever used them. Healthy, now. A better person for it. But sometimes, there’s that sense that nothing else will ever deliver quite the same satisfaction. Years later, I still find myself craving the r-word.

I went cold turkey in 2003, the year Sophie, my second daughter, was born. In the recovery room post C-section, I forced my drugged eyes open long enough to ask my husband Ray, “What are you doing?” and closed them again when he told me he was measuring the placement of Sophie’s ears, a marker of Down syndrome.

Read Amy Silverman’s full essay here:https://lithub.com/learning-to-unsay-the-r-word/

Apple’s new emoji include disability-related symbols. I’m not thrilled.

Posted on October 31, 2019
Apple emojis
(Stock)

On Monday, as part of its IOS 13.2 release, Apple released 398 new emoji, including a sloth, a flamingo, buttered waffles — and several disability-related symbols, including images of people with different skin tones in wheelchairs, a prosthetic leg, a blind person with a probing cane, a service dog and a hearing aid.

Disability advocates are cheering. I’m not thrilled.

As both the mother of a child with a disability and a journalist who covers disability-related issues, I have trained myself to look past labels to consider individuals. Just as the blue-and-white international “handicapped” symbol falls far short of including all people with disabilities, so does this handful of emoji.

Read Amy Silverman’s full piece for The Washington Post, Apple’s new emoji include disability-related symbols. I’m not thrilled.

Amy Silverman on the Challenges of Updating Our Disability Language Style Guide

Posted on October 5, 2018

Journalist and NCDJ board member Amy Silverman discusses the complexities of disability terminology and opens up about her experience updating our Disability Language Style Guide, a task she calls “one of the toughest assignments of my career.”

Read Amy Silverman’s blog post “Beyond the R-Word.”

Click here to download the 2018 NCDJ Disability Language Style Guide as a PDF.

disability language

Baby with Down syndrome wins Gerber photo contest, making history

Posted on February 8, 2018

For the first time in its 91-year history the Gerber Baby Photo Contest chose a baby with Down syndrome. The winner is Lucas Warren of Dalton, GA and his prize includes a $50,000 paycheck and Gerber advertising contract. Click here to see more photos of adorable Lucas and watch an interview on The Today Show with him and his parents.

Check out the National Down Syndrome Society’s “Preferred Language Guide” for a quick and helpful tutorial on communicating about DS.

Photo of 1 year old Lucas Warren, the winner of Gerber's annual baby photo contest. Lucas has Down syndrome. Lucas wears a light green shirt, white pants, and a blue bowtie. He smiles cheerfully into the camera.
Lucas Warren, Gerber’s 2018 Spokesbaby and winner of their annual photo contest. Lucas is the first contest winner to have Down syndrome. Credit: Cortney Warren, Lucas’ mom

Mom of daughter with Down Syndrome and heart defect fights transplant discrimination

Posted on October 24, 2017

Jackie Ward is the mother of a three-year-old daughter with Down Syndrome and a heart defect. She recently became an advocate for disability rights after experiencing discrimination from doctors while applying for a heart transplant for her daughter. Ward is now teaming up with Ohio state legislators to pass laws that will give applicants with disabilities more leverage. Check out this article and video interview with Jackie Ward from the Columbus Dispatch.

“A 2008 survey by researchers at Stanford University found that 85 percent of pediatric transplant centers consider neuro-developmental status in the eligibility process at least some of the time, Hansen said. And in the same study, 62 percent of the centers said eligibility decisions based on disability tended to be made informally, making discrimination difficult to show.”