South Korea welfare gaps impact families of children with rare diseases

Families of children suffering from long-term rare diseases in South Korea are facing severe crises involving livelihood, caregiving, and housing. Current welfare systems often fail to address these complex, overlapping needs. For instance, insurance payouts for a child's cancer diagnosis can be counted as assets, leading to the termination of essential welfare benefits, or vehicle specifications required for mobility can disqualify families from support.

Experts point to the ‘application-based’ nature of the welfare system as a major barrier. The responsibility to identify and prove eligibility falls on the families, who are often too overwhelmed by medical care and reduced income to navigate complex bureaucratic procedures. Research from the Korea Institute for Health and Social Affairs suggests that for families in extreme crisis, the act of applying for aid itself becomes a significant burden.

There is a growing call for a ‘one-stop’ support system that moves beyond rigid asset and income criteria to provide integrated services. While case management systems exist, they are often ineffective in practice due to rapidly changing guidelines and the limited capacity of social welfare officials to provide personalized counseling for every complex household.