Frustration consumes Nadina Funk when she turns on the news and sees footage of young, healthy-looking people rolling up their sleeves for the COVID-19 vaccine.
Funk, an Overlea resident, was struggling to find an appointment for herself or for her 30-year-old son, James, affectionately known as “Jimmy.” He is intellectually disabled, according to Funk, 63, who is his caregiver. And while James is mobile and sometimes verbal, he is not able to live alone.
The coronavirus pandemic disrupted James’ social life and routine, which is problematic for people with his condition. In the past, James socialized with a group of six people ages 24 to 30 for everything from concerts to a demolition derby. And he has been active in the Special Olympics.
“All the sudden he is stuck home. He’ll say, ‘Virus go away,’” she said. “I don’t think he knows what the virus is, but he knows that the virus has to go away to hang out with his friends.”
The vaccines, and the protection they offer, have inspired hope in Funk and other parents like her. She and James could return soon to a version of pre-pandemic life. He could go back to his peers and engage with the social services that made their lives whole; his protection would give her comfort, while her immunization would help ensure that she could be there to care for him a while longer.
But the process of securing a vaccination dented that hope.
”I can’t get him an appointment,” Funk said last month. “I keep trying and trying.”
Two days after this story ran online, James was able to get vaccinated and hers was scheduled.
Marylanders with intellectual and developmental disabilities have been prioritized to receive COVID-19 immunizations in the current phase of the state’s rollout, a major victory for the community of advocates, caregivers, educators and those they serve.
But with a national vaccine supply shortage and a decentralized, online booking system, many Marylanders — especially older adults, people without computers and those lacking digital skills — have struggled to secure appointments.
“As of now, many families are just like the rest of the population. They’re very frustrated,” said David Greenberg, president and CEO of The League for People with Disabilities in Baltimore. “They’ve been going on a year now living like this. It’s just not the same. You need that human touch.”
Many in Maryland’s disability community lost every social connection outside their homes as the pandemic forced them to isolate themselves with parents and relatives acting as full-time caregivers. Some adapted to remote learning and working, while others continued going to work and school in spite of the mounting risks to their health.
Not all people with intellectual or developmental disabilities are more vulnerable to developing severe illness as a result of the coronavirus, but those with underlying health problems such as weakened immune systems, heart conditions and lung disease could be at higher risk, according to guidance from the U.S. Centers for Disease Control and Prevention. Those with disabilities are also more at risk for developing underlying health conditions than the general population, the CDC reports.
People with Down syndrome, in particular, are more at risk of contracting serious illness as a result of COVID-19, according to the CDC. It is one of a handful of conditions the agency identifies as a clear risk factor.
Greenberg said the state’s decision in January to prioritize the intellectually or developmentally disabled community came as a surprise and did not give activist groups, medical day care providers and residential operators much time to prepare.
They are just a small sliver of the more than 2 million people now eligible for vaccinations under the state’s plan — and the competition for doses is fierce.
The state has asked at least 18 CVS pharmacies, in partnership with the federal government, to prioritize Marylanders with intellectual and developmental disabilities — along with older adults and educators — for vaccination appointments. The Maryland Department of Health also tasked local health departments with vaccinating at least one assisted living facility and at least one residential setting for Marylanders with disabilities each week.
Some organizations, such as The Arc Baltimore, which offers a range of social and residential services for people with intellectual and developmental disabilities, already have coordinated with federal partners or health departments to bring clinics to their offices and facilities.
Those clinics have provided at least 600 people in The Arc’s community with vaccines so far, said Kathleen Durkin, the organization’s CEO. Many of the individuals supported by the organization are essential workers, she said, making their immunization all the more critical.
William Ajala, 31, was among those vaccinated at a late January clinic for The Arc. He lives in a community living center for people with intellectual disabilities in Pikesville.
His caregiver Jyllene Edwards worries he’s a little depressed because of the isolation imposed by the coronavirus pandemic. He hasn’t seen his mother in over a year, and spends most of the day asleep or playing games. Valentine’s Day hit him especially hard: He missed seeing his girlfriend Becky.
“I was mad. I was frustrated. It was Valentine’s. I wanted to spend time with her on Valentine’s,” Ajala said. “I wanted to see my girl.”
Edwards said she expects Ajala to perk up once he gets fully vaccinated.
“It is their one hope and chance against the virus,” she said.
There are at least 17,764 Marylanders with intellectual or developmental disabilities who rely on state services, according to the Maryland Developmental Disability Administration. As many as 1,853, or 9%, have tested positive for COVID-19, according to the agency’s figures. At least 92 of those patients have died as a result.
But Rachel London, executive director of the Maryland Developmental Disabilities Council, an advocacy group, said the true number of Marylanders with disabilities is likely much higher, as the majority are not provided for by the formal service system.
“We recognize the reality; we know we’re not getting enough vaccines,” London said. “But we’re also dealing with a whole other issue here, which is that many people with intellectual and developmental disabilities cannot access and cannot wait on numerous websites to get a vaccine, and don’t know how to do that.”
Maryland’s largely decentralized, online appointment booking system exasperated Nadina and James Funk, who have been going at the process mostly alone.
She worried that he was at a higher risk of infection because masks make him uncomfortable and he cannot wear them for long periods of time. She feared he would spread the virus back to her. And she has her own health problems, struggling with chronic obstructive pulmonary disease, or COPD, an inflammatory lung disease.
London said the state could help by providing clear, easy-to-read information for the community — something the disabilities council has begun doing on its own — and making the eligibility guidelines uniform across all 24 jurisdictions. Other states have prioritized family caregivers who provide services informally for their relatives, she added, providing more protection for the community.
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“In the beginning, we saw a lot of differences in terms of access and communication in the different counties,” London said. “But we are seeing it’s starting to work itself out a bit, especially from people supported by licensed providers in residential settings.
“It continues to be a problem for those who aren’t cared for by providers at all.”
Another issue could be the accessibility of vaccine clinics, which should work to remove physical barriers, said Laura Howell, executive director of the Maryland Association of Community Services, another advocacy group for people with disabilities.
People who do find appointments may not have a way to get there or have limited mobility, Howell said. Others might find crowds overwhelming or panic when they see police officers and National Guard troops.
Dr. Maura Rossman, Howard County’s health officer, said local health departments might be best suited to address the community’s needs. Her team has set up a separate, smaller clinic for adults with disabilities and trained employees to “meet people where they are,” even if that means vaccinating some in their cars. She also has deployed a mobile response team to visit and vaccinate those who are homebound.
Still, Rossman said she can only do so much to vaccinate everyone affiliated with the community right now.
“If we were in a place where there was enough vaccine, we’d want to vaccinate the parents and caregivers of vulnerable groups,” Rossman said. “But given our shortage of vaccine, we’re forced to make tough decisions based on exposure risk and other public health factors.”