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.”
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.
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.
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.
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.
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.
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.
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.
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.
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.”
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:
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.