"Where will my child go when I am gone?" This was the anguished cry of Jeon Gyeong-cheol, a writer known as the 'Peter Pan Dad,' who recently passed away after battling cancer while raising his son, a severely autistic individual with a developmental age of just two years. His story, marked by rejection from over 1,000 facilities across the country, starkly highlighted the harsh reality that the burden of caring for individuals with developmental disabilities has fallen solely on families.
In response to the tears of the 'Peter Pan Dad,' the government has finally introduced a 'national responsibility for care' initiative. This plan aims to relieve families of the burden of caring for individuals with developmental disabilities, ensuring that even after parents pass away, their children can live independently and with dignity in their communities.
On the morning of September 10, the Ministry of Health and Welfare, along with the Ministry of Education and the Ministry of Employment and Labor, announced the 'National Responsibility for Care of Individuals with Developmental Disabilities' plan at the Government Seoul Building. There are approximately 288,000 individuals with developmental disabilities in South Korea, accounting for 11.0% of all people with disabilities, but only 26.4% can live independently, highlighting the need for lifelong support.
The government has established three main strategies and 11 key initiatives (with 50 detailed tasks) to implement the national responsibility for care, focusing on tailored support throughout the life cycle, expanding independence and social participation, and building a robust community-based support system.
Half of Caregivers Abandon Economic Activities to Prevent Family Tragedies
The reality for families with individuals with developmental disabilities has long reached its limits. According to a survey by the Ministry of Health and Welfare, 46.2% of caregivers have given up their economic activities due to the burden of care, and 29.6% suffer from severe depression and mental health issues.
Over the past four years, at least 25 cases of extreme choices or tragedies among families with individuals with developmental disabilities have been confirmed through media reports. Notably, 69.5% of individuals with developmental disabilities are adults, and with 41.3% of their parents now over 60, the fear of a 'care gap after parental death' has become a significant concern for families.
Expanding 24-Hour Care for the Severely Disabled, Even on Weekends
Measures to address the 'where will my child go after I am gone' issue, which the 'Peter Pan Dad' was most anxious about, have been prioritized. The government plans to significantly enhance 24-hour individual support services for severely disabled individuals who have been denied admission to facilities due to severe behavioral challenges.
In a significant policy shift, the government will now provide care and housing 24/7, including weekends, for individuals whose parents are deceased or absent. The number of individuals receiving integrated care for the severely disabled will increase from 2,340 this year to 2,760 by 2027.
Additionally, in line with the 'Community Independence for Persons with Disabilities Act' set to take effect in March 2027, the government will promote community-based independence support, expanding tailored housing assistance that combines public rental housing, job opportunities, and activity support to all basic local governments by 2030.
To protect vulnerable individuals from financial exploitation, the National Pension Service will enhance its public trust property management services and strengthen the public guardianship system to safeguard their assets and rights even in the absence of parents.
Innovating Delivery Systems for Services: From Charity to Normalcy
The government will also innovate the delivery system to eliminate the shortcomings of the 'application-based' approach that required families to seek services individually. New 'Regional Support Centers for Children with Disabilities' will be established in each province to provide a one-stop connection from early detection to hospitals, welfare centers, and special education.
Improvements in the treatment of caregivers, who often endure high-stress workloads, will also be implemented. A new hourly allowance for caregivers of disabled infants and toddlers will be introduced, and the professional allowance for caregivers of the severely disabled will be increased from the current 200,000 won per month to enhance service quality. The number of family respite support slots for exhausted parents will also be expanded to 18,000.
Minister of Health and Welfare Jeong Eun-kyeong stated, "Individuals with developmental disabilities need the ordinary daily lives that we take for granted. We will strengthen the support system for individuals with developmental disabilities so that the burden of care, which families have shouldered for so long, can now be shared by the state and the community."
* This article has been translated by AI.
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