public policy

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

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

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

Bill Banning Organ Transplant Discrimination Passes Senate

A medical professional carries a human organ for transplant. Courtesy FloridaPolitics.com
A medical professional carries a human organ for transplant. Courtesy FloridaPolitics.com

By A.G. Gancarski, Florida Politics

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.

Read the full article about House Bill 1179 here: https://floridapolitics.com/archives/322916-organ-transplant-discrim

Arizona legislator Jennifer Longdon delivers personal story, gun reform plea in Washington

Jen Longdon delivers speech to congress
State Rep. Jennifer Longdon, D-Phoenix, didn’t need to tell congressional lawmakers Thursday about the harm firearms can do: She showed them, when she rolled her wheelchair into a House hearing on the costs of gun violence.

State Rep. Jennifer Longdon, D-Phoenix, was one of eight legislators, advocates and medical professionals who shared sobering stories about the costs of gun violence at a congressional hearing last week in an effort to urge members of the House Ways and Means committee to take legislative action on gun control.

Longdon is paralyzed from the chest down, and her ex-fiancé lives with brain trauma and blindness, after they were struck by five stray bullets as bystanders during a 2004 shooting.

Click here to continue reading Megan U. Boyanton’s story on Cronkite News / Arizona PBS about Longdon’s participation in the hearing, which took place as Democrats press for action on gun-control bills in the wake of mass shootings that took dozens of lives in August.

Disability rights leader Marca Bristo dies at 66

Marca Bristo headshot
Marca Bristo founded and led Access Living, a non-profit that advocates for legislation and policies that ensure fair housing and accessible transportation for people with disabilities. Image: a recent headshot of Marca Bristo. (Photo: accessliving.org)

Marca Bristo, one of the most influential advocates for people with disabilities in the U.S., died on Sunday morning after a long battle with cancer. She was 66.

After becoming paralyzed in a diving accident at 23, Bristo dedicated her life to disability rights advocacy and worked tirelessly to secure legal protections and improve quality of life measures for people with disabilities.

Among her many achievements, Bristo played a significant role in getting the Americans with Disabilities Act (ADA) passed. She also founded Access Living in Chicago, a nonprofit that promoted independent living, and in 1993 she was appointed by President Clinton to lead the National Council on Disability. She provided strategic leadership to the organization in that role until 2002.

Click here to read Marca Bristo’s full obituary in the New York Times.

Who bears the cost of Flagstaff’s minimum wage increase? Caregivers, for one.

 For now, the impact of the state’s reimbursement law on the city’s finances is uncertain. Image: a photo of a piggy bank surrounded by loose coins.

For now, the impact of the state’s reimbursement law on the city’s finances is uncertain. Image: a photo of a piggy bank surrounded by loose coins. [Photo: Pixabay]
Under a law that took effect today, the state of Arizona can charge the city Flagstaff for added costs to state contracts that will occur as a result of the city’s newly-implemented minimum wage increase. Many care providers cannot shoulder this added cost, however, as they already struggle to pay their employees due to insufficient state funding for their services. Unable to pay more than minimum wage, many companies cannot keep a steady workforce of caregivers. And with fewer providers, there will be fewer opportunities for people with disabilities.

Click here to read this Cronkite News article online.

 

EPA won’t ban chlorpyrifos, a pesticide linked to kids’ developmental disabilities

chemical structure of the insecticide chlorpyrifos
Image: a stock illustration portraying the chemical structure of the insecticide chlorpyrifos.

E.P.A. Won’t Ban Chlorpyrifos, Pesticide Tied to Children’s Health Problems

By Lisa Friedman

Originally published in the July 18, 2019 edition of the New York Times

 

In a New York Times article published this week, Lisa Friedman reports that the Trump administration took a major step to weaken the regulation of toxic chemicals on Thursday when the Environmental Protection Agency (E.P.A.) announced that it will not ban chlorpyrifos, a pesticide linked to developmental delays in children. It has also been linked to lung cancer and Parkinson’s disease in adults.

The decision, which was made by E.P.A. administrator Andrew R. Wheeler, represents a win for the chemical industry and for farmers who have lobbied to continue using the toxic chemical despite its potential to cause serious harm.

Although the Obama administration announced in 2015 that it would ban chlorpyrifos after scientific studies produced by the E.P.A. showed the pesticide had the potential to damage brain development in children, the prohibition had not yet been carried out when, in 2017, then-E.P.A. administrator Scott Pruitt reversed Obama’s decision and provoked a wave of lawsuits.

Click here to read the article online.

PHOENIX Magazine article by NCDJ board member Amy Silverman details lack of in-home care options

“Raising Phoenix: Home-Care Woes”

Screen Shot of Phoenix Mag article by Amy Silverman
June 2019 issue of Phoenix Magazine featuring an article by NCDJ board member Amy Silverman. Silverman points out that there are limited in-home care options for people with disabilities in Arizona. [Image: a screen shot of Amy Silverman’s article “Raising Phoenix: Home-Care Woes,” featuring an illustration by Cedric Cummings]
In an article in the June 2019 issue of Phoenix Magazine, NCDJ board member Amy Silverman draws attention to the fact that there aren’t enough resources and support services available in Arizona for families who care at home for loved ones with disabilities. “According to the Arizona Council on Developmental Disabilities, there are 130,000 or so people in that category in Arizona, and almost 90 percent live at home,” Silverman says.

In addition to highlighting the need for better home-care services in the state, the Phoenix Magazine article also highlights Arizona’s failure to investigate the state’s Division of Developmental Disabilities, despite there being scores of formal complaints and well-documented concerns regarding the poor quality of the DDD’s in-home nursing services.

Click here to read Amy Silverman’s Phoenix Magazine article online.

Olmstead decision turns 20

[Video courtesy of EquipforEquality / YouTube]

Twenty years have passed since the Olmstead decision by the Supreme Court, which found that people with disabilities have a right to receive services outside of institutions, and to be fully integrated in their communities.

Background

The 1999 Olmstead v. L.C. decision fundamentally changed the lives of Lois Curtis and Elaine Wilson, who had both been institutionalized and living in isolation for an extended period of time after they had been voluntarily admitted into a state-run psychiatric unit for treatment. Even after mental healthcare providers approved their release, Curtis and Wilson were, essentially, stuck in the institution.

The Case

In a first-of-its-kind use of the ADA–which was less than a decade old–Curtis and Wilson filed a lawsuit. The result was a landmark decision by the Supreme Court, which found that confining individuals “greatly diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.”

Olmstead Impact

Since the Olmstead decision in 1999, many people have been freed from institutions and have a legal right to live where they want to live.

Listen to Ruth Bader Ginsburg deliver the majority opinion for the court:

Washington Post food critic to add accessibility to restaurant reviews

A screenshot of "Why I will start including accessibility information in my restaurant reviews," Washington Post food critic Tom Sietsema's article that was published on May 22.
“Why I will start including accessibility information in my restaurant reviews,” the article by Washington Post food critic Tom Sietsema that was published on May 22. Image: a screenshot of Sietsema’s article, which depicts an illustration of a man in a wheelchair superimposed over an architectural blueprint.

Tom Sietsema, a well-known food critic for the Washington Post, has announced that he will add accessibility information to his restaurant reviews. His decision, as Sietsema explains in a post published earlier this week, was prompted by feedback he’s received from readers, who frequently contact Sietsema to ask about restaurants’ accommodations for people who use wheelchairs, or people who are blind. Sietsema said he initially had concerns about remaining under-the-radar as a restaurant critic “while measuring doorways with a tape measure.” But, upon considering that more than 70,000 Washingtonians live with a disability, Sietsema realized the importance of his obligation to serve his audience.

Click here to read Sietsema’s announcement in the Washington Post.