Carers urge respite support for ventilator-dependent disabled adults
HK01 · 2 SOURCESabout 2 hours ago6 MIN
Summary
A single mother in Hong Kong says she has spent years providing near round-the-clock care for her daughter, who has cerebral palsy, severe intellectual disability, a feeding tube and a tracheostomy, but still cannot find suitable respite support in the community. Parents and an association for families of people with severe intellectual disabilities say similar cases fall into a service gap because hospitals, respite services and residential homes often cannot take people who need invasive mechanical ventilation.
Key Points
- Mrs Lam (林太), 43, said her daughter Chi-ching (芷晴) was diagnosed with cerebral palsy at birth, assessed as severely intellectually disabled, received a gastrostomy at age one and later underwent a tracheostomy after repeated pneumonia
- She said the turning point came in 2019, when her daughter developed pneumonia for the 10th time, struggled to breathe immediately after extubation and was re-intubated within minutes, leading her to consent to the tracheostomy
- Since then, Mrs Lam said she has had to suction her daughter’s sputum more than 30 times a day, sometimes for an hour at a stretch, while overnight oxygen-monitor alarms mean she usually sleeps less than four hours
- During the Covid-19 period, she could not promptly hire a foreign domestic worker and said a home respite referral did not let her leave because visiting nurses would not perform tracheostomy suctioning; later, another application was rejected after she had hired a helper
- Association chair Lai Pui-wei (黎沛薇) said about 12 students with severe intellectual disabilities were using tracheostomies with full-day ventilator support as of May, with two having already left school, leaving them dependent on home-based arrangements
Why It Matters
For families caring for people with high medical needs at home, the immediate issue is not only the intensity of nursing tasks but the lack of any dependable backup when a caregiver becomes ill, exhausted or unavailable. The cases also raise pressure on the government’s community rehabilitation system to show whether existing centres and outreach teams can actually serve the most medically complex disabled residents, rather than only those with lower care needs