Brian Lee, a 26-year-old living with Down syndrome in Kuala Lumpur, continues to develop essential skills that many take for granted, such as doing laundry and managing daily tasks aimed at fostering greater independence. His mother, special needs trainer Chan Oi Wah, 68, is focused on preparing him for a future where she may no longer be able to provide care. Chan, who left her dental clinic job in 2003 to care for Brian, emphasises the importance of building a support network while helping him achieve as much self-reliance as possible.
“I’m nearing 70 and Brian is only 26. I need to prepare for the journey ahead,” Chan explained from her home in Cheras. She maintains journals and short-term plans targeting skills like cooking and handling money, enabling her family to track his progress and plan accordingly. Although Brian has an older brother, Chan does not want to assume he will assume caregiving duties, underscoring the uncertainty many families face regarding the future care of neurodivergent adults.
This challenge was among the central topics at a forum titled “The Next Chapter: Planning for Neurodivergent Lives and Ageing Families,” held in Kuala Lumpur on September 22. Organised by the Malaysian Healthy Ageing Society (MHAS) with support from Oasis Place, the event brought together specialists, caregivers, and advocates to address the intersection of neurodivergence, ageing, and long-term care. Women, Family and Community Development Minister Datuk Seri Nancy Shukri officiated the conference.
Participants emphasised the need to initiate planning early, encompassing aspects such as mental health, healthcare access, financial management, and legal considerations. MHAS president Prof Nathan Vytialingam described neurodivergence as a lifelong journey that extends beyond childhood interventions. He highlighted the current gap in Malaysia’s ageing society preparations, stressing that the responsibilities for supporting neurodivergent adults do not diminish as children become adults.
“Planning cannot begin only when parents reach a point when they can no longer cope,” Prof Nathan said, urging policymakers and communities to focus on housing, healthcare, social participation, and continuity of care well in advance. He noted that many families face new challenges as caregivers age, necessitating a more holistic and forward-looking approach.
Among those voicing concerns was Desiree Kaur, mother of 11-year-old Nevyr Haans Narajeevan, who has autism. Desiree noted the increasing recognition of Malaysia’s ageing population but said neurodivergent individuals must also be included in national preparations. She questioned whether existing healthcare systems and support networks are equipped to meet their evolving needs.
“Such forums create space for important conversations and, more importantly, spark action to address gaps in holistic care for ageing neurodivergent individuals and their families,” she stated. Desiree, a podcaster with the diversity and inclusivity advocacy group Kita Family, called for sustained efforts to improve services.
The forum’s discussions align with the Malaysia Care Strategic Framework and Action Plan 2026–2030, which aims to enhance the national care ecosystem through collaboration among government bodies, communities, NGOs, and the private sector. The framework outlines five strategic areas including legislation, advocacy, workforce development, research, and technology, with a focus on inclusivity for older persons and individuals with disabilities.
Dr Choy Sook Kuen, founder of Oasis Place, stressed the importance of early intervention to prevent caregiver burnout. She called for expanded allied health workforces and integrated services that address the needs of neurodivergent individuals and their families comprehensively, rather than in isolated sectors.
“As Malaysia plans for an ageing society, neurodivergent families must be part of that plan,” Prof Nathan said. “We should not wait until families reach a crisis before asking who will provide care, where they will live, or how they will be supported.”