special-needs people overlooked during pandemic, advocates say

by: lori culbertas she injected covid vaccines into the arms of people, including many with special needs, nurse shazia mele was worrying about her sister samina, who lives with other adults with developmental disabilities on a vancouver island farm.in early march, mele was entering group homes to inoculate this vulnerable population in the health authority where she works. at the same time, her own sister was waiting to be vaccinated by a different health authority, with no announced date for when jabs for samina and her roommates would be scheduled.people with disabilities are more likely to have existing heath conditions that can make covid-19 more lethal and they often cannot comprehend why the pandemic has changed everything. so mele desperately wished her sister and relatives could experience the joy and relief that vaccines were providing to her patients’ families.“the gratitude was absolutely, utterly amazing. these people have lost their normal activities of daily living. they’re not able to go to their day programs, they’re not able to go to the mall and sit in the food court, or to do the things that they typically do,” said mele. a registered nurse for 25 years, she has spent at least 20 of those years in some capacity with special-needs people.“those things have been taken away by this pandemic. and this is a group of people who don’t have the capacity to understand why. there has been a massive loss for so many of them: with their contact with family, with their contact with their community.”mele’s family is close and samina’s parents have always provided her crucial support. but since pandemic restrictions were declared in march 2020, samina has had one visit from her parents and one from mele. she has not seen her other two sisters at all.“if you look at the fact that these are people living in congregate settings, who are likely much more fragile than the typical person, they should have been prioritized much earlier on,” mele said.phase 1 of b.c.’s vaccine rollout, from december to february, targeted long-term care home residents and staff, and some health-care workers at hospitals. people with certain special needs were given high priority in phase 2, which began in early march, or in the later phase 3, depending on where they live and the nature of their disabilities, the health ministry said.how early people with disabilities got immunized depended on their health authority. vaccinations started in late february in fraser health, but not until mid-march in vancouver coastal health, and late march/early april on vancouver island and in the interior, the ministry confirmed on friday.it explained that vaccine “delivery varied slightly depending on the home and its residents,” and that each health authority’s schedule for getting jabs to priority groups was dependent on factors such as outbreaks, case levels in communities and population density.recent british research shows that people with disabilities had a disproportionately high number of covid-19 deaths, experienced disruptions to their medical treatments during the pandemic, and were more likely to report that restrictions had hurt their lives.similar research is underway in canada, but mele said it is generally understood in the medical community that people with down syndrome can often have heart defects or other genetic anomalies that make them more susceptible to covid-19 complications. others with special needs might be more sedentary and therefore at higher risk of complications because of obesity or higher rates of diabetes, she added.

samina — who was born with brain damage and functions at the level of a two-year-old — got vaccinated by island health on march 28, several weeks after mele had started injecting special-needs people in her own health authority. (mele was given permission to tell her story on the condition that she not identify her employer or speak on its behalf.)during that gap, samina’s mother pushed to get her daughter urgently vaccinated by phoning island health, complaining to thepatient care quality office, and lobbying the local mla.the family said they place no blame on the large, rural home where samina, 45, has lived happily for two decades, glenora farm, but rather questions the decisions made by the health ministry and health authority.

‘forgotten population’

“i just thought, ‘what the hell is going on here?’ samina, of all people, should be prioritized. she’s in a high-risk community,” said another sister, yasmeen qureshi, who lives in new york, where vaccines were initially distributed more quickly than in b.c.“it’s just completely unacceptable that they were not protected sooner. i think it just circles back to the lost voice in this forgotten population.”while samina’s family is grateful she now has her first jab, they remain frustrated by the difference in services that special-needs people received.for example, while mele inoculated people with disabilities in the comfort of their homes in one part of the province, samina and her roommates were driven to a vancouver island city where they attended a public vaccination clinic — “not the best setting,” she said, for people like her sister who cannot comprehend why she is getting a needle or why she is surrounded by strangers.“sending somebody into a mass vaccination clinic, who already has underlying issues with levels of understanding, and then anxiety and fear amongst lots of people, i think is really poor,” mele said.the ministry said where health authorities immunized priority groups varied, based on factors such as the availability of vaccines at certain locations and times, and the ability to store them at proper temperatures. in fraser health, this was predominantly done in group homes. in vancouver coastal and island health, residents were mainly brought to clinics, although at-home visits were arranged if patients were unable to make the trip.

during phase 1, health-care workers entered long-term care facilities to deliver vaccines, and that should have been the same model used for this equally vulnerable group, qureshi argued.“why didn’t special-needs people get that same treatment?”the province said people living in group home settings have all been offered their first shots, but qureshi would like their second jabs handled more consistently and compassionately.there are 936 group homes in b.c. with 2,694 residents that are operated by private or non-profit agencies. they all receive funding from community living b.c., a crown corporation that supports adults with developmental disabilities. just over half of these homes have three to five residents, and are therefore licensed by the health ministry and inspected by a health authority. the other half of the homes have two or fewer residents, and are therefore not required to be licensed.about two-thirds of b.c.’s 1,680 deaths were in long-term care homes, where the virus spread quickly among staff and the vulnerable 27,500 seniors living in the government-subsidized facilities. health officials have made regular announcements about cases and deaths in these care homes, and identified the residences with outbreaks.by comparison, the number of cases and deaths in congregate homes for special-needs people has never been made public, and few outbreaks were announced.the ministry said outbreaks in group homes “are not required to be publicly disclosed” because of privacy concerns. “due to the size of group homes, publicly posting when outbreaks occurred could identify residents given the small number of people living in these facilities,” the ministry said.it added community living b.c. is collecting preliminary data “to better understand the pandemic experience in group homes.”

two deaths in one group home

while the ministry said it was not its policy to alert the public about outbreaks, interior health did issue some press releases about covid cases in special-needs group homes, including the death of two residents of a kamloops facility after they contracted the virus. the outbreak at westsyde care residences, for people with brain and spinal cord injuries, and mental and physical health challenges, was declared over on march 11, after 13 staff and 17 residents tested positive, including the two who died.also in march, interior health said an outbreak had ended at sister group homes highridge home and singh house in kamloops, where eight staff and five residents tested positive for covid-19. and it was reported in january that a group home for adults with developmental disabilities run by vernon district association for community living had an outbreak involving five residents and 17 staff.postmedia was unable to find any public notification about a small group home in the vancouver coastal health region where a handful of staff and residents contracted covid-19, including a non-verbal, autistic man in his 40s named russell (a pseudonym). this man’s family agreed to speak with the newspaper, but requested anonymity because they want to respect the privacy of the staff and other residents.in mid-march, the family learned a worker in the group home had covid and that vaccines had been scheduled for the residents. health workers who arrived to give russell the shot noticed he had some symptoms, and a test would prove he had covid-19 as well.“it sort of struck terror in our hearts when we found out that it was somewhere in the home,” said his sister anne.the family was initially concerned that russell’s autism and some other health conditions might mean covid-19 could hit him harder than the general population. they were unable to visit him, so had to rely on regular updates from group home staff about his recovery.it turns out her brother, who is physically strong, did not develop severe symptoms, but anne also worried about how some of the other more vulnerable residents would fare if they, too, became infected.when there is covid transmission in a group home, the health ministry said, “measures are immediately put in place” to reduce risk for residents and staff. public health workers liaised with the homes and community living b.c. to provide safety plans, hand out masks and other personal protection equipment, and support management of cases and outbreaks.community living b.c. declined an interview request for this story, but official randy schmidt said in an email the crown corporation helped residents and staff minimize exposures through online resources, regular covid updates to families and teleconference calls.anne believes group home staff and residents with developmental disabilities were put “at the bottom of the pile” when the province announced people in congregate settings would be vaccinated in phase 2 or 3 of the rollout. if her brother had been offered a shot before mid-march, she said, he may not have contracted the virus.“congregate living is people working at whistler (ski mountain), and it’s prisons, and it’s a whole bunch of different things. and they have different risks and totally different needs. and so it just seemed like a very big group to lump them into with no communication from the government,” anne said.“there’s nobody to advocate for this community. and they’ve traditionally been marginalized. and there was just no communication about when they would get their turn.”russell finally got his first vaccine in early may, and anne hopes he can return soon to his beloved routine of visiting his parents’ house every saturday for a beer and every sunday for a hot tub soak. for now, though, his parents can only wave hello through his group home window and drop off some snacks.“it’s very hard to know what he thinks of all this, if he thinks that we’ve abandoned him or something.”

‘you can only hang on by your fingernails for so long’

in addition to adults with special needs, the pandemic has been hard on children with developmental disabilities and their families. they lobbied the government for early access to vaccines because of fears these young people were more susceptible to covid-19, said jennifer charlesworth, b.c.’s representative for children and youth.the province, though, declined their request, possibly because of the logistics of figuring out who would qualify for early vaccination, said charlesworth, who continues to hope the government can find a way to better support these developmentally delayed youth and their caregivers.“it might be something to consider for a second dose, for example, to help those families have fewer worries than what they are carrying for their children right now,” she said. “for many families, their children have not been able to go back to school because they’re just worried about that kind of exposure.”in a report released in december, left out: children and youth with special needs in the pandemic, charlesworth chronicled the difficulties suffered by youth with disabilities during covid’s first wave in 2020, including losing “vital medical treatments, therapies, specialized recreational activities and respite.”b.c. is now in its third wave, and those findings from the report have not improved, she said.“the phenomenon that we were describing in terms of families feeling really, really stretched and stressed, has not changed through the pandemic. if anything, it’s got more acute because of the passage of time. you can only hang on by your fingernails for so long,” charlesworth said.“what has become so clear to us through covid is that there are populations of young people that have very significant needs, and that their families have needs that are simply not being met. they weren’t met before, and now these families are definitely at much greater risk.”the ministry was noncommittal when asked if there would be a more consistent distribution of the second vaccine to british columbians with special needs, saying only that “all regional health authorities have plans underway to support group home sites and residents with their second dose immunizations.”during the rollout of first shots, the health ministry said, delivering doses to priority groups was dependent on vaccine supplies. each health authority also faced “unique dynamics” such as geography, the many types of congregate living setups, and different regional health care and social services systems.

but the qureshi family, which includes the parents and four sisters, began to lose patience in march when samina was the last to get her jab — even though she is arguably the most vulnerable. mele, the nurse, received her first dose in december, the same month as natasha, the youngest sister who is a medical resident in new york. yasmeen, a journalist who also lives in new york, got her first shot in early march. their mother, in her 70s, and father, in his 80s, who live in west vancouver, got their first jabs later in march.“samina was the last one in our family, which i think is really unbelievable,” yasmeen qureshi said. “and special-needs people are a higher-risk population because they have more co-morbidities.”the family continues to worry, especially with the uncertainty caused by the new covid variants, that if samina gets sick, her relatives can’t help her in the hospital, where she would be alone and very confused.so, they are speaking publicly, raising their voices with other advocates who would like people with disabilities to be given more priority as this pandemic continues, including during second shots.“they don’t have a voice. i’ve observed that my whole life that people with special needs are not talked about,” mele said. “they’re forgotten.”lculbert@postmedia.com