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MOH reviewing COVID-19 processes to be more inclusive of people with special needs

The Ministry of Health (MOH) is reviewing its COVID-19 processes and arrangements to be more inclusive of people with special needs, Parliamentary Secretary for Health Rahayu Mahzam said on Wednesday (Jun 9).

Ms Rahayu said that the ministry is also looking into engaging people who are trained to work with those with special needs in her Facebook post. Her post came a day after a family member of a person with special needs wrote on Facebook the issues her brother faced during the swab and quarantine process.

Ms Amylia Koh had shared here detailed experience after her brother, who has an intellectual disability and relies on his family to care for him, was issued a quarantine order. Ms Koh wrote the post as a “frustrated caregiver”. She wrote that after a request for quarantine at home was declined, she made arrangements with MOH to care for her brother during his stay at a government quarantine facility. “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,” she said.

Her full post here

I am writing this as a frustrated caregiver of a sibling with additional needs and on behalf of the future & current individuals with Special Needs and their families who are vulnerable to the COVID virus.

When news of the new Covid-19 cluster at MINDSville@Napiri was reported on 2 June, my family braced ourselves for the unavoidable Quarantine Order from the Ministry of Health. You see, my brother is a client of MINDSville@Napiri, Training & Development Centre. He has an intellectual disability and is reliant on the family to care for him.

As one of my brother’s primary caregivers, and a Special Education teacher myself, I would like to highlight our experience in the past few days. Hopefully, this will help MOH better plan for possible future cases involving special needs communities such as the MINDSville cluster, and avoid the utterly shocking way we have been treated a few days ago.

On the night of 3 June, my brother was issued a Quarantine Order by way of a phone call from MOH. 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. 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 needs folks and persons with disabilities, it seems that the most urgent need for education would be right in the MOH backyard.

The clients of MINDSVILLE are those who have been diagnosed with Intellectual Disability (ID) and/or Down Syndrome (DS).

In technical terms, following the DSM-IV, characteristics of the neurological disorder (ID) include (1) IQ falling below 70, (2) deficits in intellectual functions such as reasoning, abstract thinking, and (3) deficits in adaptive functioning such as practical care (i.e., self-help/daily-living skills).

On the night of 3 June, when our request for Home QO was rejected, I informed the MOH Officer that my brother is intellectually disabled, and that I will be caring for him throughout his QO at the Government Quarantine Facilities (GQF) assigned. The MOH officer acknowledged this information and said he would update my details alongside my brother’s. 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.

At 12 pm on 4 June, my brother and I were on standby with our luggage, ready to board the shuttle bus to the GQF. To my dismay, I was not listed as a caregiver, and was prohibited from boarding the minivan. I reiterated to the CISCO Officer that my brother is Intellectually disabled and would require a caregiver’s accompaniment. 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. After some dispute and disagreement, we were instructed to wait for the next pick up at home.

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. This was further reinforced during our experience at the swab site.

To describe the swabbing experience as horrifying would be to undermine what my brother was put through. Prior to the QO, I had enquired with various MOH officers on the possibility of recruiting alternative testing methods such as the breathalyzer tests developed in Singapore itself by local startup Silver Factory Technology. 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.

Although I was the caregiver and the person who was most equipped to handle my brother and his needs, I was instructed to watch from a distance. 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. After a good 30 minutes, they finally heeded my suggestion and allowed me to step in and assist them. Had your team prepared yourselves to manage and understand the profile of the clients from MINDSville, this could have been avoided.

In addition, I would like to highlight that the level of unpreparedness could have brought about dire outcomes for both my brother and the swabbers. Had my brother become aggressive during his meltdown or started lashing out or pulling at the PPE of the swabbers, they could have been injured, and put at risk of infection transmission of the virus if my brother was indeed an infected person. 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. Additionally, my brother could have been injured during the swabbing process as well, had he struggled and somehow caused the swab stick to go too far up his nose.

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? This would also have been a perfect way to showcase to the world how we handled special needs persons, and how we used homegrown technology to fight this virus with compassion, leading to numerous PR opportunities locally and internationally.

People with ID struggle to comprehend abstract concepts, and Covid-19, a transmissible virus naked to the human eye is no different. People with special needs are in fact, more susceptible to the virus transmission, because they are unable to understand the perils of the virus, and the importance of proper handwashing, proper wearing of masks, and even simple but very important rules like “hands to self”, a cue familiar to SPED-trained therapists or educators. 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.

There will be likely more clusters within such institutions in the future. It is imperative that MOH understands the profile of people with special needs, and change the way you approach such cases by:

1. Engaging specially-trained professionals to assist your front liners in managing people with special needs and to pre-empt the clients of the procedures (like swabbing) and rules (of QO) through the use of symbolic visuals, real-life picture visuals, or social stories - resources familiar in the SPED sector

2. Using non-invasive, non-traumatic testing methods to ensure the utmost cooperation from people with special needs, and to avoid physical aggression directed towards front liners during moments of agitation

3. Ensuring that the information of the families of special needs children and persons are cascaded down to respective departments consistently

With a little compassion and empathy, our healthcare system can become more inclusive and cater to the needs of all. 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.

In response to Ms Koh's post, Ms Rahayu said that MOH has heard her feedback and will improve communications between various agencies involved in managing the quarantine process.

"We understand their grievance and it is indeed unfortunate that they had to go through such an experience. We recognise that the swab process and the quarantine can be more challenging for persons with special needs as they may not be comfortable with unfamiliar people or environment."

Ms Rahayu, who has a child with special needs, said that these tests need to be done by people who are trained to ensure accurate results, but that these professionals have not been specially trained to deal with people with special needs.

"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 said.

She said that the ministry will also look into the various feedback received, including studying the effectiveness of deploying alternative COVID-19 tests while balancing the considerations for speed, comfort and accuracy of the test.

"We will also improve communications between the various agencies involved in managing the quarantine process," she added.

She noted that quarantine of close contacts is carried out for effective containment of cases to limit the spread of the COVID-19 virus in the community.

"We accommodate requests for an accompanying caregiver for persons under quarantine (PUQ) with an extenuating circumstance," she said referring to people who may be elderly, minors or those who have a medical condition and are unable to look after themselves.

"We have reminded Certis, our agent for quarantine orders, to be mindful and exercise compassion when dealing with persons with special needs," she said.

As we continue our battles in such testing and trying times, its important that we need to adhere to Safe Management Measures. We should be doing more to protect ourselves and our families to exposure.

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