Parents of Adults With Developmental Disabilities Fear the Care Gap After Death

For parents of adults with developmental disabilities, care does not end when a child reaches adulthood. Their deepest anxiety is what will happen when illness, age or death leaves them unable to manage housing, daily routines and money for a son or daughter who cannot live independently.

That concern shaped an education session organized by the Incheon Welfare Center for People with Disabilities with support from the Incheon Metropolitan Support Center for Developmental Disabilities. The session introduced public guardianship and trusts as ways to prepare for a parent’s death. Families said care still falls to them after their adult children return from daytime protection centers.

The risks include more than the loss of daily assistance. The session reviewed cases in which adults with developmental disabilities had savings taken by acquaintances or borrowed money and passed it to others. Such financial harm shows why families seek arrangements that can protect assets while supporting the person’s own decisions.

Inheritance can collide with benefit rules

Available programs remain difficult for some parents to navigate. Families described public guardianship and trust procedures as complicated even after repeated instruction. Public rental housing rules can also create concern because eligibility may depend on an applicant’s assets, while inherited property can affect means-tested benefits such as basic livelihood support or the disability pension.

One proposal discussed at the session drew on special needs trusts used in the United States and Britain. Under qualifying arrangements, trust assets can be excluded from the assets considered when determining eligibility for certain public benefits. Applying a comparable model in South Korea would require an amendment to the National Basic Livelihood Security Act and coordination between trust managers and welfare service providers.

Parents also called for housing and care systems that would allow their children to remain in familiar communities after family support disappears. They sought stable public-sector employment rather than short-term work. The central demand is a structure in which inherited resources and public assistance can be used together, while responsibility for care is shared by government and local communities rather than left to aging parents alone.