#HEALTH: The next chapter of care for a neurodivergent child

A forum in Malaysia highlighted the need to integrate the requirements of the neurodivergent community and families who have provided lifelong care into the country's aging and long-term care plans. The Malaysian Healthy Ageing Society (MHAS), in partnership with Oasis Place, hosted the forum titled "The Next Chapter: Planning for Neurodivergent Lives and Ageing Families."

The event brought together healthcare and social-care experts, caregivers, advocates, and stakeholders to tackle the crucial question of what happens to neurodivergent adults when their parents and caregivers who have supported them throughout their lives start to age themselves.

MHAS President Professor Nathan Vytialingam emphasized that neurodivergence should be viewed as a lifelong journey, not an issue that ends during childhood intervention. He stressed that Malaysia must ensure adequate planning for families who have devoted decades to caring for neurodivergent and disabled loved ones. Their needs do not cease when a child becomes an adult; instead, the responsibility of ensuring their dignity, security, and meaningful support remains.

Many families have dedicated years to focusing on education, therapy, and daily care, only to confront new challenges as parents and primary caregivers grow older. Effective planning must commence well before parents can no longer cope, covering housing, healthcare, financial and legal arrangements, social participation, community support, and continuous care throughout the next stage of life.

This necessitates a wider understanding of healthy ageing, which extends beyond the individual to encompass their families and communities.

Oasis Place founder Dr Choy Sook Kuen stressed that the aging of caregivers is a matter families must address earlier rather than later. Ageing should not be a concern only when a person becomes older; it is a continuous conversation, especially for neurodivergent individuals and those with disabilities whose support needs can change throughout their lives.

The transition can be particularly challenging for families who have relied heavily on parents as primary caregivers for many years. While parents naturally want to ensure their children's safety and support, we cannot presume that parents will always be there to offer that assistance. Families should build a network of support around the individual and their family well before a crisis occurs, involving families, healthcare and social-care professionals, government agencies, community organizations, and the private sector to establish practical and sustainable support systems.