For the past two years, Covid-19 has been the bane of everyone’s existence. The fear of a potentially fatal virus has morphed into a fear over our way of life — people have lost jobs, companies have shuttered and we’ve had to deal with restrictions on how we lived, worked and played.
In this constantly changing “new normal”, we have made steps in appreciating our frontline heroes and acknowledged the pains of more vulnerable groups of people like our elderly and migrant workers.
But one of the forgotten groups of people who struggle with Covid-19 are those with special needs.
We have progressed leaps and bounds in how we are handling the pandemic, but have we really made progress for the care of those with special needs?
Struggles serving Quarantine Order
On 7 June, Amilia Koh, 26, aired her frustrations in a Facebook post on how her brother, who has special needs, was treated when he was served with a quarantine order.
Amilia’s brother is a client of [email protected], which became a Covid-19 cluster on 2 June, with the first case being detected on 31 May.
On the night of 3 June, the Ministry of Health (MOH) called the family to issue a quarantine order to her brother, who has an intellectual disability. The family asked for a home quarantine but was rejected and so Amilia, who is one of her brother’s caregivers and a special-education teacher, informed an MOH officer that she would be accompanying him during his quarantine at the facility assigned to him. He replied that he would update the details accordingly.
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“I was anxious because my brother would be out of his routine, in an unfamiliar setting, away from our parents,” Amilia later told The Pride.
However, Amilia wrote that at noon the next day, when they were set to depart for their assigned Government Quarantine Facility, she found out that she was not listed as a caregiver and so was prevented from boarding the transport.
Despite explaining her brother’s intellectual disability and how a caregiver needed to accompany him, she said that the Cisco officer on site did not seem to be able to handle the situation. The MOH officers whom she called to resolve the situation were unable to help her either. They finally instructed the family to wait for a second pick-up later.
Problems with swab tests
Prior to carrying out a quarantine order, everyone needs to undergo a swab test, an uncomfortable but mercifully quick experience for many.
Unfortunately, it’s not the same experience for people with special needs.
Amilia told the Pride that “to describe the swabbing experience as horrifying would be to understate what my brother was put through.”
Prior to her brother’s swab test, Amilia had warned the staff about the difficulties of swabbing a person with an intellectual disability via their throat or nose. She also asked for alternative testing methods such as breathalyzer tests. Instead, the team did not listen to her and kept her a distance away from her brother.
She wrote on Instagram: “All the swabbers took turns trying to swab my brother, who became increasingly frustrated and was on the brink of an aggressive meltdown. His agitation, discomfort, and frustration were apparent, brought about by his inability to comprehend the situation, and his being surrounded by unfamiliar masked faces, away from his caregiver.
It took 30 minutes before the swabbers gave up and allowed Amilia to assist them.
Another similar case was shared on Friends of ASD families’ Facebook page. Like Amilia’s brother, 18-year-old Matthew was afraid of the officers in PPE and started hitting the wall due to his distress. Unlike in Amilia’s brother’s case, the swabbers for Matthew recognised the potential dangers due to his increasing agitation and exempted him from the swab.
Both experiences however, left a lasting negative impact on both young men.
Matthew’s mother Cindy shared: “Matthew would hit himself everytime he relives the traumatic experience of stepping into an unfamiliar environment with all the people in strange attire from head to toe and the fear of being poked.”
“Whenever he hears any update about the swabbing in our estate, he will shake his head rigorously and scream, ‘No! No! No!’” she added.
Amilia told the Pride that in addition to being fearful of the officers in PPE, her brother would be terrified at the mention of swab tests, yelling “No! No! I don’t want it!”
Promises to improve
Fortunately, MOH was quick to respond.
Parliamentary Secretary for Health Rahayu Mahzam, who is a mother of a child with special needs herself, responded to Amilia’s post and said that MOH is reviewing its Covid-19 processes and arrangements to be more inclusive of people with special needs
Ms Rahayu said that she intends to improve communications between the agencies in-charge of the quarantine processes to deter the repetition of Amilia’s experience.
The ministry is also looking into engaging people who are trained to work with those with special needs, she said in a Facebook post.
“We are looking into engaging relevant professionals, as well as volunteers from the National Council of Social Service, who are trained to work with persons with special needs,” she shared.
Moving forward, the ministry intends to look into the feedback they have received, analyse the effectiveness,comfort and time sensitivity of alternative COVID-19 tests.
Taking steps for better care of the disabled
On 16 June, I checked in with Amilia after they finished with their quarantine order and it seems like the entire family is happy that they are home. Her brother is thrilled to be back doing his favourite things like going to the supermarket and cycling around the neighbourhood.
But before going home, her brother had to undergo another swab test and I was delighted to find out that the second round had been easier for them.
During the second round of swabbing, special education professionals from the Movement for the Intellectually Disabled of Singapore worked together with the medical team. This time round, Amilia said that the swabbers were conscientious towards her and her brother and the special-education personnel were properly prepared with visual aids and goodies to help ease her brother’s swab test.
Amilia shared that while the original circumstances were troubling, she hopes that the subsequent actions provide people and families with special needs a sense of relief and reassurance.
She said: “This demonstrates commitment from the ministry. I pray that such efforts will continue and that there will be further positive revisions to anticipate from here on!”
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When The Pride spoke with Amilia about what encouraged her to speak out about her experience, she said: “The voices of caregivers of minority groups such as persons with special needs often fall on deaf ears and are drowned out by the media, leaving these vulnerable communities feeling powerless.”
She hoped that as Singapore moves forward in its fight against Covid, the authorities would relook its “one size fits all” approach — certain segments of our society need different types of attention.
Adults with special needs is one such minority group, she said, adding that many are thrown out of their comfort zones with the changes in their usual schedules. They are also thrown off by people in masks and fearful of the strangers in PPE suits wanting to ‘poke them’.
“Hopefully, with the raised awareness of this problem, we can work together once again to create a more inclusive and comfortable quarantine experience for all,” said Amilia.
She added: “As we continue to evolve as a society, let us remember that there are those who are incapable of keeping up and that we need to be their guiding light. Always choose to be empathetic and stay compassionate.”