Family care support for severely disabled, rare disease patients extended to end of 2028

The period during which family members of people with severe developmental disabilities or rare diseases may provide activity support services has been extended by two years and two months.

The Ministry of Health and Welfare said Tuesday that the Cabinet approved an amendment to the enforcement decree of the Act on Activity Support for Persons with Disabilities.

Under the revised decree, family members who serve as activity support workers for people with severe developmental disabilities or rare diseases will be permitted to provide such services on a temporary basis until Dec. 31, 2028 — extended from the previous deadline of Oct. 31 this year. The change reflects the difficulty many families face in finding qualified support workers.

Under current rules, activity support workers who are family members of a beneficiary may only provide services in exceptional circumstances, such as residence in remote or isolated areas or natural disasters. The benefit rate in such cases is set at 50 percent of what non-family support workers receive.

The temporary arrangement has been in place since November 2024, allowing family members to provide activity support to qualifying individuals with severe developmental disabilities or rare diseases.

To qualify as severely developmentally disabled, a person must have an IQ of 35 or below or score 30 or below on the Goal Attainment Scaling assessment; those enrolled in integrated care programs are also included. Rare disease patients qualify if they meet the criteria for supplementary activity support benefits and have gone unmatched with a support worker for 60 or more consecutive days.

Cha Jeon-gyeong, director general of the ministry's disability policy bureau, said the ministry hopes the measure will "ease some of the worries facing families of people with severe disabilities and rare diseases," adding that it will continue working to ensure activity support services "provide solid support to the lives of more people with disabilities and their families."