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Philadelphia parents of kids with disabilities aren't eligible for the vaccine. But they would be if they lived elsewhere in Pa.

Philadelphia Inquirer - 3/24/2021

Mar. 24—Cecelia Thompson walked into a Philadelphia pharmacy and handed over a state form declaring her eligible for the vaccine as an unpaid caregiver for a person with a disability.

Thompson, a single mother to her 22-year-old son, Trevor, who is living with severe autism and an intellectual disability, finally let herself feel some relief.

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Instead, the pharmacy turned her away. So did the next one she tried, and the next. She soon learned that Pennsylvania's vaccine rules, making people like herself eligible in January, did not apply to Philadelphia.

The Pennsylvania Department of Health develops vaccine prioritization and other coronavirus-related rules for counties across the commonwealth, with the exception of Philadelphia, which establishes its own vaccine guidelines. If Thompson lived outside the city, she would have been considered in the first vaccine priority group, along with health-care workers.

"I was hurt by that," said Thompson, 55, of Powelton. She later became eligible due to an unrelated health condition, but she worries about the other people the city policy leaves out. "Everyone's loved one is not in a facility. Most people want their loved one at home until they can't do it anymore."

Experts estimate Thompson is one of thousands of Philadelphians who are the caregivers for a loved one at home with a disability, but could not point to a definitive count.

Caregivers perform intimate tasks, similar to the work done by other eligible groups like direct support professionals, that increase the risk of transmission. Families of people with disabilities may also have other health-care workers come into their home to help their child with medical issues, adding to risks of infection.

Health Commissioner Thomas Farley defended the department's current vaccine priority list.

"It needs to be more clearly defined. Could everybody just say that they're a caregiver of someone else?" Farley said during a Tuesday news conference. "That basically makes everyone eligible."

Still, advocates have been pushing the city to match the state's prioritization rule for unpaid caregivers, like parents of people with disabilities. Philadelphia recognized last week that people with intellectual disabilities should be prioritized for the vaccine, referencing a recent Thomas Jefferson University study that showed this population was at greater risk of death from the coronavirus.

Advocates say this did not go far enough. Wendy J. Ross, a physician and the director of Jefferson Health's Center for Autism and Neurodiversity, coauthored the study of nearly 550 health-care organizations that persuaded Philadelphia to expand vaccine eligibility to those with intellectual disabilities. She said their caregivers should also be prioritized.

Intellectual disability is the top unspoken risk factor for COVID-19. So why is it not prioritized for vaccine? — Opinion

"The safer we can keep their homes, the safer they will be," Ross said. "The safer their families are, the more they can provide the care their children need."

People with intellectual disabilities already faced obstacles to health care, which were exacerbated by the pandemic, Ross said. They may have sensory issues that would make it more difficult to wear a mask for long periods, could be exposed to more people at home, like direct support professionals, and might have difficulty expressing if they feel sick.

"Patients with intellectual disabilities and their caregivers should be prioritized for vaccination and health care services," the study reads.

Advocates say the disability community, which also includes people with developmental disabilities, has been left out of vaccine rollout plans — something they say reflects society's broader dismissal of the value of people with disabilities.

Philadelphia officials expect to make all adults eligible to be vaccinated by May 1. Advocates fear opening up eligibility will only further marginalize people with disabilities and their caregivers, forcing them to compete with the general population for hard-to-find vaccine appointments.

Shane Janick, the executive director of The Arc of Philadelphia, an advocacy group, said the lack of prioritization is "due to stigma, the historical mistreatment, and lack of consideration" for this community.

"We also devalue care staff," Janick said. "The two almost go hand in hand."

For adults with intellectual disabilities, COVID-19 poses many challenges

'We know our kids can die'

The threat of the coronavirus has kept Heidi Allen awake at night, worrying about her 7-year-old son, Michael, who has several disabilities, including cerebral palsy and autism.

Allen, 48, who is now a stay-at-home mom after leaving her career as a medical social worker, has been involved in local and statewide advocacy to prioritize unpaid caregivers like herself in the vaccine rollout.

Her family felt afraid to leave the house and her husband, a Philadelphia teacher, is still working from home. But Michael needed orthopedic surgery recently. The vaccine would give her family a layer of protection, she said, so they would not worry quite as much about passing the virus on to their son.

"This is PTSD for parents with kids with disabilities," Allen said. "It is really traumatizing to have to deal with this. We know our kids can die."

She hears reports of people misrepresenting their medical conditions to get the vaccine, but she has waited her turn. She eventually received a vaccine from a local pharmacy's wait list last week, something she attributes more to luck rather than her situation.

"Caregivers is an overlooked group," Allen said.

Vaccine matchmaking

Gerri Newton, 73, was finally eligible for the vaccine when the city expanded eligibility to include all adults 65 and older. At the time, her son, Christopher, 41, who has intellectual disabilities, was not.

Newton, of Mount Airy, woke up every morning at 7 and checked for online appointments at Rite Aid, Walmart, and CVS, but could never find an opening.

Eventually, she got in touch with Anna Perng, the cofounder of the Chinatown Disability Advocacy Project, who recently launched a coronavirus health equity coalition to help underrepresented groups, like Newton's family, get vaccinated.

Perng acts as a vaccine matchmaker. She pairs people who want and need a vaccine with last-minute leftover doses from clinics run by the Family Practice and Counseling Network. Perng can direct people to open appointments at clinics or even ask Tarik Khan, a family nurse-practitioner, to administer leftover shots at a family's home like a mini mobile clinic.

'House call heroes' can get more people vaccinated in Philly and beyond — Opinion

"Tarik can come at the end of the day with unused vaccines, but we really should be changing the fact that they should be prioritized to begin with," Perng said, referring to unpaid caregivers. "That's a Band Aid. It's not the solution."

It's personal for Perng, she says, as a disability rights advocate and mother of two children with multiple disabilities. Last weekend, she was able to secure Newton and her son appointments at a clinic.

Still, Newton wishes the city had declared her and her son eligible earlier.

"That," she said, "would've taken a lot of stress off of me."

Michael Swainson, 47, is a very independent adult. He also is a client of a program that helps people with intellectual disabilities manage for themselves as much as possible in the homes and communities of their choice.

Swainson rents his own apartment and works at a Philadelphia store five days a week, either walking the 22 minutes it takes to get there or taking a rideshare. He has a girlfriend, and is a sports fanatic: "If I can, I'm never home. I go to Phillies games. I go to Eagles games. I go to Flyers games. I'm a big sports person. It's better to be there at the games in person," said Swainson.

When COVID-19 hit, and Swainson was furloughed and had to follow stay-at-home orders, he became depressed and worried about his finances — as did millions of Americans. But for him and other adults with intellectual disabilities, the pandemic came with an additional layer of complexity, because they need extra assistance with issues far less challenging than this.

"I got upset, and I couldn't do anything about it," Swainson said.

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Swainson is a client of KenCrest, a Philadelphia-based provider organization that is striving to keep the community safe, even as its clients are at greater risk of contracting COVID-19. Lauren Tilghman, director of strategic communication for KenCrest, said the majority of its clients have underlying health conditions such as heart disease, stroke, or diabetes, which makes them more vulnerable to the coronavirus. In Pennsylvania, people with intellectual disabilities are nearly twice as likely to die from COVID-19 as other residents who test positive for the virus, according to an NPR analysis.

"Michael had his good days and his bad days, like we all do," said his program manager, Rachael Miroddi. "He didn't want to rely on anybody. He's very independent. He likes to do things for other people. He's a very generous, kind-hearted person, and when he wasn't working, he wasn't able to show that as much as he liked."

Miroddi said that Swainson likes to buy his own groceries and personal items, and that it was very difficult for him when he had to rely on her to deliver food and other necessities to his door. He was also dealing with a lot of worry about the pandemic, Miroddi said. She texted him multiple times a day — encouraging him to take socially distanced walks in a park and to spend time cleaning and reorganizing his apartment.

"I think that people in our program are way more capable than society tends to give them credit for, especially when it comes to working," Miroddi said. "Just because they're in a program doesn't mean they can't do what we can do."

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KenCrest conducts early intervention with families and runs early learning centers in Philadelphia, in addition to providing housing, employment, and programs for adults with intellectual disabilities.

"Our goal is to work with them on their dreams so they can get assistance to learn skills," said KenCrest president and CEO Marian Baldini.

Stephen Davis, program director for PersonLink, another agency in Philadelphia providing supports to people with intellectual disabilities, also said the pandemic has been very disruptive to its clients.

"If you want to talk about empathy, the first thing that we should think about is, whatever you may be going through as an individual, know that our population is experiencing that tenfold," Davis said.

» HELP US REPORT: Are you a health care worker, medical provider, government worker, patient, frontline worker or other expert? We want to hear from you.

He pointed to particular challenges his clients are confronting, such as wearing face masks. Centers for Disease Control and Prevention guidelines say that a person who cannot independently put on or remove a face mask should not be wearing one.

"Well, that might be ... 60% of our population, that may need assistance with removing or putting on a face mask," Davis said. "That means you can't go back to your community participation support. It means you also probably cannot engage in certain things in your immediate community. So you're even more restricted."

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Furthermore, Davis said the pandemic is putting his clients at an even higher risk of being abused than they were before COVID-19.

"We also know that 70% of the perpetrators of that abuse, neglect, and exploitation are family members or primary caregivers," Davis said. If you're shutting down that person's ability to go to their [community participation services] provider and you're shutting down that person's ability to go to their supported employment provider ... you may be, in fact, restricting them to be at home all day with their abuser.\"

To mitigate these circumstances, PersonLink's support coordinators keep in close touch with their clients, and the agency provided about 20 clients with iPads, so they can stay in touch with the outside world. In addition, PersonLink employees conduct phone calls or drive-bys and porch visits to make sure everything is OK, Davis said.

Another challenge was finding professionals, such as Abiola Ajibola, who were willing to work with individuals in supported living who had tested positive for COVID-19. For weeks, Ajibola lived in three KenCrest homes with three different sick clients, nursing two of them back to health. The third had to go to the hospital.

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"I don't have any underlying illness, so that gave me the force of encouragement that I would be able to render good services," Ajibola said.

He followed a strict cleaning protocol and mostly stayed with his COVID-19-positive clients in their rooms. With one nervous patient, "I used my hand to brush her hair," he said. "I talked to her. I said, 'Give me a smile. It will be OK.'"

Exhausted dementia caregiver wonders which will last longer, the coronavirus pandemic or her "type":"interstitial_link "url":"https://www.inquirer.com/health/caregiving-coronavirus-pandemic-dementia-mother-daughter-daughterhood-20200910.html

One of the most rewarding aspects of his work during the pandemic was seeing sick clients not only recover but also regain their independence, Ajibola said.

Swainson said that sometimes he gets depressed about the pandemic, even though he is back at work.

"It is what it is," Swainson said. "I can't really do anything about it. We just have to go through it." "type":"text

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