"There Was No Miracle for 'Peter Pan Dad'": The Tragedy of a 29-Year-Old with Disabilities

Heartbreaking news arrived over the weekend: Jeon Gyeong-cheol, known as the "Peter Pan Dad," had passed away. Raising his son alone since he began showing symptoms of autism around his first birthday, this father used to call his son "Peter Pan" after hearing someone compare autistic individuals to Peter Pan, the boy who never grows up. Then, he was diagnosed with terminal liver cancer and given six months to live. He tried to find a residential facility that would take in his autistic son, who had turned 26 and would soon be left alone in the world, but it was far from easy.

A program featuring his story aired in March, a moment the father called "the beginning of a drama." Donations poured in, and he was able to find a facility where his son could live. Watching an interview given by the "Peter Pan father" before he passed away while on a train heading to Hwasun, South Jeolla Province for reporting, my heart felt heavy. Are other Peter Pan parents around the world experiencing such a "beginning of a drama"? At least for one Peter Pan mother I was on my way to meet that day, that was not the case.

The mother of "A," whom I met in Hwasun, South Jeolla Province, has lived as a Peter Pan mother until her son with developmental disabilities reached the age of 29. A's family and a visiting support worker take turns looking after him. Still, A is often left alone at home. People around her tell her to send her son to a facility, but she said no place would accept him.

[Mother of A: People around me tell me, "Why don't you send him to a facility?" But in reality, there's no facility that can take him. They won't accept him. It's because he can't manage his bodily functions or basic personal care.]

This is due to her son's "challenging behaviors," such as self-harm and aggression toward others. That was when she learned about "integrated care." Launched in June 2024, the "Integrated Care Service for People with Severe Developmental Disabilities" was created for individuals like A. It recognized that people with developmental disabilities face hurdles using conventional care services and that the burden on families has become overwhelming, requiring a dedicated service. The Ministry of Health and Welfare stated, "It signifies that the state is taking responsibility even for those who are considered the most challenging to care for."

The mother applied for the service in February and was selected in March. She was notified that A was eligible for the service and had been assigned to the daytime group model among the three service types. Yet even as September arrived, care for A has not begun. First, the lack of caregivers hired was the issue. Because it is regarded as having the highest level of difficulty among caregiving services, few people are willing to do the work. Despite repeated job postings, no applicants showed up, and time passed. It was not until late July that she finally received notice that one person had been hired. Just three days later, however, another call came informing her that care would be difficult because this year's budget had already been exhausted.

[Official from Jeonnam Developmental Disability Support Center (Phone call in July): I'm afraid I have to tell you that you'll have to wait on the waiting list again.]

After waiting four months, a caregiver was finally hired, only to find that there was no funding when it was time to begin. The caregiver who had barely been recruited quit in the meantime.

[Official from Hwasun County Office: (Is there any timeline on when hiring might happen?) We have to wait and see about future job postings.]

Why did this year's budget run out so quickly? The capacity for Hwasun County to provide this service this year was limited to three individuals with developmental disabilities. A was the third applicant. However, the budget intended for three people was reportedly entirely consumed by the two who were already receiving services. I also inquired with the Jeonnam-Gwangju Special City. They explained, "The state distributes the budget based on 'average unit costs.'" In other words, the government does not allocate enough funding from the outset to cover the maximum care hours an individual with developmental disabilities might need. I also asked the Ministry of Health and Welfare. Officials explained that for the 24-hour individual model, which is considered even more demanding, funds are left over because fewer people are willing to work, whereas in the daytime group model, services are actively provided, leading to budget shortfalls. The ministry stated that because daytime group budgets are depleted across most local governments nationwide, it plans to allow them to share surplus funds among themselves within this month. I wondered why the budget could not simply be allocated at maximum levels from the start, regardless of service type. The response was, "From the fiscal authority's standpoint, they have no choice but to consider the overall execution rate." This was understood to mean: what if a large budget is allocated but cannot be fully spent?

The caregiver shortage remains a chronic problem. For instance, in the case of the 24-hour model, the government's target service capacity is 340 individuals. Given that it operates around the clock and requires shift work, an estimated 1,200 caregivers are needed. Yet only 541 workers are actually employed. The ministry is working to improve working conditions by raising their professional allowances to 200,000 won per month. In monitoring conducted one year after the program's launch, 45.7% of caregivers reported having sustained injuries. Considering the difficulty of such care, it remains questionable whether such measures can be deemed sufficient.

The overall assessment of this integrated care service is positive. In a government survey of individuals with developmental disabilities and their guardians, many responded that it gave them time to recover from caregiving burnout. Recipients with developmental disabilities also showed positive changes, including emotional stability and a reduction in challenging behaviors. I asked Kim Mi-ok, a professor of social welfare at Jeonbuk National University who participated in the system's design and has researched the field, how things could be improved. She first pointed to "better treatment for caregivers," emphasizing that these positions must become decent jobs and that a culture of gratitude and respect must be fostered. As an immediate measure, she suggested tearing down barriers between service models so that budgets could be used more flexibly.

[Kim Mi-ok / Professor of Social Welfare at Jeonbuk National University: What if we ease barriers so the budget can be used flexibly (across service types)? ... I believe we need to refine the system so it is user-centered and relieves the caregiving burden on families.]

Sharing this reporting is not to suggest that the integrated care service for people with severe developmental disabilities is unnecessary, meaningless, or that its budget should be cut. After the initial broadcast aired, a comment appeared on YouTube that seemed aimed at the mother: "Be grateful if they provide it; if not, do it yourself." Reading that comment, a line from a book I recently read came to mind: the moment family caregiving is viewed as a social welfare asset, the state gains an excuse to neglect social welfare. When the state takes responsibility, it means we share the burden together. We have an obligation not to let today's story of the "Peter Pan father" who struggled alone simply fade away as "once upon a time, there was such a touching story." The reason why is simple: because the story of A's family could one day become our own.

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