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.

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, who is a member of the Philadelphia school board. 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.

» READ MORE: 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.”

» READ MORE: 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.

» READ MORE: ‘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.”