A frustrated caregiver of a sibling with special needs took to Facebook on Monday (7 June) to share her experience dealing with the process of a Quarantine Order (QO) from the Ministry of Health including the “horrifying” swabbing experience.
Ms Amylia Koh detailed in a post how her brother, who is a client at [email protected], Training & Development Centre was issued a QO on 3 June as part of the MINDSville cluster.
Ms Koh wrote, “We understood the necessity but did not agree with the way that the MOH team and its contracted personnel managed the case.”
“The utter lack of awareness of the profiles of the clients of MINDSville was shocking and disappointing.”
She went on to say, “Despite the many campaigns and programmes run by various government-led organizations for inclusivity, to celebrate and help special needs persons, to educate members of the public about special n”eeds folks and persons with disabilities, it seems that the most urgent need for education would be right in the MOH backyard.”
As Ms Koh’s brother has an intellectual disability and is reliant on his family to take care of him, they requested for a home QO, explaining his condition and need. However, the request was rejected.
As such, she told the MOH officer she spoke to that she would be caring for him throughout the QO at the assigned government facility. She noted that the MOH officer acknowledged the information and that he would update her details with her brother’s.
She said: “I was anxious myself because my brother would be out of his routine, in an unfamiliar setting, away from our parents. People with special needs thrive on routine and might engage in maladaptive behaviours due to change.”
The next day (4 June), the pair were standing by with their luggage to be transported to the facility. Unfortunately, Ms Koh was not listed as her brother’s caregiver and she was prohibited from boarding the shuttle bus.
“I reiterated to the CISCO Officer that my brother is Intellectually disabled and would require a caregiver’s accompaniment,” she stressed.
“I used the terms “mentally incapacitated”, “intellectual disability”, and “MINDSville cluster” to explain my brother’s situation, and none of them seemed to register in the minds of the CISCO Officer on site and MOH Officers on the phone.”
Eventually after some ”dispute and disagreement”, they were instructed to wait for the next pick up at home.
Ms Koh said in her post, “This demonstrated the incompetence and lack of organization within the MOH administrative office, which is highly worrying, as mistakes could lead to clusters growing exponentially, or even risk another cluster forming.”
“Not only was the team unprepared to manage QO cases of persons with special needs, but also demonstrated a severe lack of compassion and understanding when caregivers tried to enlighten them on the disability and their needs.”
The experience did not improve, however.
Describing the swabbing as “horrifying”, Ms Koh noted that she had spoken to various MOH officers prior to the QO about the possibility of recruiting alternative testing methods such as the breathalyzer tests developed in Singapore itself by local startup Silver Factory Technology.
As she explained it, “This testing protocol had gained international media attention and was widely lauded as a breakthrough that would be safer for healthcare workers.”
“I highlighted the possible difficulties that the swab team might face should they attempt to swab an intellectually disabled person via the regular throat and nasal methods, but all these fell on deaf ears.”
“The lukewarm, uncaring, uncompassionate responses I received certainly set the stage for the ineptitude we were about to face at the swab site,” she said.
Despite being the caregiver and most equipped person to handle her brother and his needs, she was instructed to watch from a distance as he was swabbed.
All the swabbers took a turn at attempting to swab her 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.”
About 30 minutes later, the people on site finally heeded Ms Koh’s suggestion and allowed her to step in to assist them.
She slammed in her post, “Had your team prepared yourselves to manage and understand the profile of the clients from MINDSville, this could have been avoided.”
She went on to explained that this level of unpreparedness could have resulted in dire outcomes for both her brother and the swabbers. She explained that if he has become aggressive and started lashing out or pulling the PPE off the swabbers, they could have been injured and put at risk of being infected if he was indeed infected.
On top of that, her brother could have been injured as well if he had struggled mid-swab, causing the swab stick to go too far up his nose.
“With all the IPC protocol in place, it is shocking to know that this was not considered a potential risk while dealing with people with ID,” said Ms Koh.
She went on to question: “Why would MOH place so many at risk with the insistence on adherence to regular swab methods? Would this not have been the perfect opportunity to showcase the much-lauded new testing method, by simply reaching out to the organization, and the persons in charge of approving new testing methods?”
She noted that this would have been the perfect opportunity to showcase to the world how Singapore handles persons with special needs as well as homegrown technology to fight the virus, highlighting the public relations opportunities this could bring both locally and internationally.
Ms Koh went on to say, “I can only imagine how stressful and traumatic it must have been for the MINDSville clients who were accompanied by their ageing parents during the QO.”
With the expectation that there would be more clusters within institutions like MINDSville in the future, Ms Koh stressed that it is “imperative” for MOH to understand the profile of people with special needs and change the way it approaches such cases.
She suggested they engage specially-trained professionals to assist frontliners in managing people with special needs. She also suggested using symbolic visuals, real-life picture visuals, or social stories to help people with special needs better understand what they will be going through.
She also suggested using non-invasive and non-traumatic testing methods and ensuring that the information of the families of special needs persons sent to the respective departments is consistent.
“With a little compassion and empathy, our healthcare system can become more inclusive and cater to the needs of all,” emphasised Ms Koh.
“Compassion in healthcare is not a function of one individual – it is shaped and influenced by our environment and the systems in which we live and operate.”
“MOH and its partners would do well to embody this in their protocols when handling this pandemic.”
Ms Koh isn’t the only caregiver to have such a troubling experience with the QO.
In the comments section of her post, another caregiver whose sibling was placed under QO from the same cluster detailed their experience with the “confusing process and protocols” which was shared on Twitter.
Mr Yap Meng recalled having been called five to six times over a day to explain that he and his mother would be quarantined at home with his special needs brother only to be told repeatedly that someone would be coming over to assess whether their home is suitable.
There was also confusion when his brother developed symptoms and was warded at Changi General Hospital. It was decided he would serve out the QO there. Oddly, Mr Yap and his mother were told they didn’t need to be tested for the virus despite being close contacts.
It also appeared that the authorities were confused about where his brother was quarantined as they called him up on Day 4 to ask for his temperature even though he was in CGH.
Mr Yap said in a Tweet: “And you would think that we are 1.5 years into fighting this pandemic, all the SOPs, protocols and processes should be iron-clad but clearly from this experience, it clearly is not.”
Gonna start a thread on how shit and confusing the processes and protocols are and how organisations involved in these aren't talking or sharing with each other.
— Yap Meng (@yapmeng) June 7, 2021
MOH looks to improve swabbing process for special needs persons
The authorities are now seeking feedback on how to handle swabs for special needs persons as more testing operations are rolled out.
In a Facebook post early on Wednesday (9 June), Parliamentary Secretary in the Ministry for Health Ms Rahayu Mahzam said that the MOH has heard the feedback and recognise that the swabbing and quarantine process can be more challenging for persons with special needs.
“My colleagues at MOH will work to improve on our processes,” she said, adding that the MOH is 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 added: “We will also look into the various feedback received, including studying the effectiveness of deploying alternative tests while balancing the considerations for speed, comfort and accuracy of the test, as well as reviewing our processes and arrangements to be more inclusive for persons with special needs.”
In the post which was also shared on the MOH Facebook page, Ms Rahayu also noted that the MOH “will also improve communications between the various agencies involved in managing the quarantine process.”
Ms Denise Phua, Singapore Mayor and President of Autism Resource Centre also chimed in on Ms Koh’s Facebook page, saying that MOH is working on the matters raised by her and addressing the gap.