2nd July 2022 – (Hong Kong) Sze Ka-yan, who is suffering from Rett Syndrome was sent to the community isolation facility at the AsiaWorld-Expo (AWE) because she was a close contact of an infected resident at Integrated Rehabilitation Service Centre in Lohas Garden. Sze’s mother questioned that AWE staff might not know how to take care of a disabled person, and worried that her daughter would not be able to adapt to the new environment, so she believed that quarantine at the residential care home or at home would be more ideal.
In response, Social Welfare Department (SWD) which is in charge of the quarantine facilities at AWE said that the care services are provided by outsourced care teams, who will employ qualified and appropriate staff in accordance with contractual requirements.
Sze needs to be taken care of by others at all times, including brushing her teeth and washing her face, changing clothes and bathing, and going to the bathroom. In addition, because Sze is unable to express herself clearly, she usually asks others to ask questions before she answers briefly. The seven close contacts of the residents, including Sze, were transferred to AWE for quarantine a few days ago, but the staff of the residential care home and their family members were not allowed to accompany them, let alone quarantine them at home or in the residential care home.
Rett syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops. This disorder causes a progressive loss of motor skills and language. Rett syndrome primarily affects females. Most babies with Rett syndrome seem to develop as expected for the first six months of life.
An organisation concerned with rare diseases described arranging disabled residents to go to AWE for quarantine as “extremely dangerous” because residents could not “take care of themselves in the quarantine centre, and accidents can happen within minutes”. Kenneth Chan, chairman of The Elderly Services Association Hong Kong, said bluntly that due to the temporary nature of the community isolation facilities, the SWD has not announced the number of staff on duty and the number of beds available. He also believes that according to the current epidemic situation, the quarantine at the residential care home is more ideal.
The SWD emphasised that the care services of AWE are provided by outsourced care teams, and the team must employ qualified and appropriate staff, including nurses, health workers and personal care workers, according to the contract requirements. Staff will also check the health index of the elderly and the disabled every 4 hours, including body temperature, blood pressure, pulse and blood oxygen level. The Department of Health also provides medical support. In addition, due to the limited space and equipment of the residential care home, keeping confirmed cases and their close contacts in the residential care home may infect others. Therefore, in-situ quarantine is not the most suitable arrangement at present.
Sze is around 27 years old this year. At the age of 3, she was diagnosed with Rett’s disease. Her bodily functions gradually deteriorated, and she lost her ability to take care of herself, move and speak. She needs 24-hour care. Her mother, KK, took care of her diligently, but unfortunately she later found out that she suffered from stage 3 breast cancer and hence she had to send her daughter to a residential care home. She was afraid that her daughter would pass away suddenly. At a young age, Sze suffered from frequent cramps, and because of the atrophy of the cerebral cortex, she could not control her behaviour. She kept smacking her hands and beating her mouth unconsciously, which caused joint pain and lip sores.
Sze has been ill for more than 23 years, KK has devoted half of her life to Sze, and her other 11-year-old girl also complained that she was neglected.