17 January 2019, Bird & Bird
We are pleased to say that SNNHK’s first “homegrown” event was a success! The SNNHK volunteers welcomed both familiar members and new faces at the event. Sarah Tam, mother of a young disabled child and SNNHK Volunteer, presented on the rights and entitlements of children with special needs and disabilities in Hong Kong. There was active discussion and sharing during the open discussion session. The SNNHK volunteers were glad that communication was multilateral – not only was factual information disseminated by the organizer, but parents and caregivers who had gone through the process themselves also selflessly shared their valuable experience with other participants. .
It is natural for most of us, who are living in a relatively privileged part of the world, to assume doctors/professionals/social workers will be able to help us. Indeed, the Hong Kong government has been doing a decent job in providing support to families of children with special needs and disabilities, only that the system may be too complex (not complicated) to navigate and the professionals in the system are not bound to be proactively bringing the services to eligible families. From our vantage point, the gap is not huge and can be easily bridged by people whose interests are most aligned – parents and caregivers of children with special needs and disabilities. This is what shapes our objects and our work: supporting parents and caregivers in bridging the gap.
I recently came across the term “lived expertise” used by patient advocates on Twitter. It came much later than when our first SNN Shares event was conceptualized but in hind sight, lived expertise is indeed what we have been trying to bring out to the fore front. One of our goals at SNNHK is to empower parents and caregivers. By highlighting the importance of the parents’ and caregivers’ lived experience and encouraging sharing among them, lived experience transforms into lived expertise. We hope to be organizing events that are similar in spirits on other topics that may be interesting to you.