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Pennsylvanians with disabilities too often are overlooked when it comes to public health. In Lancaster County, that needs to change.

Intelligencer Journal - 4/16/2021

THE ISSUE

In a column published in the Sunday LNP | LancasterOnline Perspective section, Dennis B. Downey asserted that Pennsylvania was “late to the game” in addressing the needs of people with disabilities during the COVID-19 pandemic. According to the Centers for Disease Control and Prevention, 23.9% of adults in Pennsylvania have some type of disability. Downey is Millersville University professor emeritus, chair of the Public Interest Law Center of Philadelphia’s Disability Policy Circle, and author of the book, “Pennhurst and the Struggle for Disability Rights.”

We were particularly struck by this line in Downey’s column: “With the graying of the baby boom generation, it is more than likely that disability is your destiny, as it is mine.”

And then this: “What is true for individuals born with a permanent developmental or congenital condition will also come true for more and more elderly residents. In a sense, we are all just one accident away from just such a plight. And ‘tough luck’ is lousy social policy.”

That is the stark truth. But it isn’t the only reason we should be concerned about the issues raised by Downey. People with disabilities are our neighbors, friends, family members, co-workers. They are part of our community.

And Downey is correct: “Tough luck” is terrible policy. We wouldn’t want to leave our future well-being to chance. We shouldn’t want to leave the current well-being of others to chance either.

Downey outlined the shortcomings:

— In March 2020, even as alarms were sounding about a crisis in the commonwealth’s nursing homes, Downey observed that the state news briefings and data collection “did not include any mention of the tens of thousands of Pennsylvanians with a disability living at home or in congregate-care facilities.”

He wondered whether the Pennsylvania Department of Health was even working with the state Department of Human Services on the crisis.

He contacted the state Health Department and was connected to a local case manager who told him dismissively, “We have nothing to do with group homes.”

Downey is a respected retired university professor with an academic’s networking and research skills. If the response to him was inadequate, bordering on clueless, we don’t want to imagine the response (or nonresponse) others would get. He wrote that state news briefings eventually began to include more mentions of group-home COVID-19 guidelines, “but the collection of data and its dissemination to the public are still inadequate.”

— In Downey’s assessment, the “commonwealth has a fragmented and sometimes dysfunctional system of public health.” The Public Interest Law Center of Philadelphia’s Disability Policy Circle, he wrote, has “heard from a wide range of professionals and self-advocates across the commonwealth on the difficulties people with disabilities face in housing, employment, education, emergency planning and, especially, access to medical treatment.”

“Pennsylvania’s system is a perfect example of the silo effect,” Downey wrote, “wherein officials compartmentalize responsibility and don’t talk to each other. The official response to COVID-19 testing and vaccination reminds us of the absence of a well-coordinated and strategic approach to the myriad issues touching on public, or community, health.”

— That same lack of a coordinated, strategic public health approach is “painfully obvious,” in Downey’s view, and ours, in Lancaster County, too.

For decades, the debate in this county over a public health department has been swayed by political ideology and turf protection, rather than a clear-eyed, commonsense look at this community’s needs.

Downey asserted, and we agree, that moving forward, the debate must include the public health needs of county residents with disabilities.

The stakes have become crystal-clear during this pandemic. As Downey pointed out, “public health research has documented that individuals with a disability are one and a half times more likely to die if they contract COVID-19.” And he pointed to a study from Britain that concluded that individuals with Down syndrome are four times more likely to be hospitalized and 10 times more likely to die than the general population when exposed to the novel coronavirus.

As the website Disability Scoop details, the Biden administration is seeking to redress some of the country’s failings during this pandemic regarding individuals with disabilities.

The U.S. Department of Health and Human Services, the CDC and the Administration for Community Living will provide nearly $100 million to improve access to COVID-19 vaccination for people with disabilities and older adults, that website reported.

Given the higher COVID-19 mortality rate among Americans with disabilities, getting them vaccinated must be a priority, and we’re glad that the Lancaster County Community Vaccination Center at Park City Center has made efforts to be as accessible as possible to people with disabilities.

But the needs identified by Downey and other advocates go beyond one site fulfilling one pandemic-related need.

In the earliest weeks of the pandemic, for instance, people with disabilities who rely on federal food assistance couldn’t use those benefits to pay for groceries delivered to their homes. And their increased vulnerability to COVID-19 meant they couldn’t go to grocery stores to shop.

Last spring, Pennsylvania was among the states that joined a federal pilot program that allows households relying on Supplemental Nutrition Assistance Program benefits to purchase groceries online through participating stores. This was a welcome development, but millions of Americans went for weeks without access to food, according to the advocacy organization RespectAbility.

Many of us now attend virtual meetings for work. But a recent study conducted by RespectAbility, with The Chronicle of Philanthropy and The Nonprofit Times, found that even before the pandemic, only 14% of respondents said their organizations used video captions to ensure that people who are deaf or hard of hearing could participate fully. Who is ensuring that public health messaging is conveyed effectively to people with disabilities?

Who is coordinating county efforts to prevent injury and disease, and to mitigate dangers (like childhood lead exposure), which can lead to disability?

It is to our county economy’s benefit that everyone be able to contribute to their best ability. And for the sake of public health in this county, the most vulnerable among must be shielded effectively from community spread of infectious disease.

As Downey wrote, a “well-managed county public health agency” that takes seriously the health needs of people with disabilities “would be of enormous benefit to individuals and the county as a whole.” And it would “ensure better interagency coordination and communication between the county and the commonwealth. A decent respect for the welfare of these citizens and neighbors is not too much to ask.”

It certainly is not.

What to Read Next

Crédito: THE LNP | LANCASTERONLINE EDITORIAL BOARD

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