Who will care when parents can no longer care?

 

WHAT happens to neurodivergent adults when the parents who have cared for them for decades grow old themselves?

That increasingly urgent question will take centre stage at The Next Chapter: Planning for Neurodivergent Lives and Ageing Families, a forum organised by the Malaysian Healthy Ageing Society (MHAS) in collaboration with Oasis Place on Sept 22.

The event, to be held at Four Points by Sheraton Kuala Lumpur, Chinatown, will bring together healthcare professionals, caregivers, legal practitioners, advocates and neurodivergent adults to discuss long-term planning for families as Malaysia’s population ages.

It will be officiated by Women, Family and Community Development Minister Datuk Seri Nancy Shukri.

MHAS vice-president Dr Wong Teck Wee said support for neurodivergent individuals should be viewed as a lifelong journey rather than something focused only on childhood intervention.

“Neurodivergence is a lifelong continuum that evolves across the human lifespan, requiring us to shift our focus from acute childhood intervention to sustainable, long-term planning for ageing families,” he stated.

“Building a truly inclusive society means ensuring neurodivergent individuals receive the dignity, care and robust support networks they need at every stage of life.”

The forum comes as Malaysia moves towards an ageing society, prompting growing concerns about what happens when lifelong caregivers are no longer able to provide support.

The programme will feature a keynote address, Ageing Through a Neuroaffirmative Lens, by US-based occupational therapist and autistic advocate Dr Bill Wong, the first occupational therapy practitioner to have delivered three TED or TEDx Talks.

Two panel discussions, When Parents Age Too: Who Plans for Whom? and Ageing at Home: Building Your Circle of Support, will examine issues including changing care needs, legal and probate planning, family support and building wider care networks beyond parents.

The discussions will feature consultant child and adolescent psychiatrist Dr Albert Lee Muh Haur, neurodiversity advocate Jacquelyn Ang, lawyer Goh Siu Lin, neurodivergent adult CJ Chew, consultant geriatrician Datuk Dr Tunku Muzafar Shah Tunku Jaafar, MHAS secretary Dr Kantha Ruban, NASOM honorary secretary Cason Ong Tzse Chun and Dr Bill Wong.

Oasis Place founder Dr Choy Sook Kuen said planning for ageing should begin long before families reach a crisis point.

“Ageing is not something we should begin planning for only when a person becomes older. It is a lifelong conversation, particularly for neurodivergent people and people with disabilities whose support needs may evolve across the lifespan,” she remarked.

She added that supporting parents, siblings and other caregivers was equally important to ensure care remained sustainable and compassionate across generations.

The forum will run from 8am to 1pm on Sept 22 at the Jeune Room, Level 8, Four Points by Sheraton Kuala Lumpur, Chinatown. Registration is RM100. ‒  Focus Malaysia