Waited Four Months Only to Be Told "Budget is Gone": A Phone Call That Crushed a "Peter Pan Mother"

00:00 A Peter Pan Father Passes Away... Is That the End of the Story?
01:01 Over 20 Years of Caregiving Weight... "Facilities Won't Take Him Either"
02:02 Promised the "State Will Take Responsibility"... But an Endless Wait
03:03 How Are Budget and Staffing Shortages Being Addressed?
04:50 High Satisfaction Services... The Need to Enhance Completeness

1. A Peter Pan Father Passes Away... Is That the End of the Story?
Over the weekend, heartbreaking news was delivered. Jeon Gyeong-cheol, known as the "Peter Pan Father," had passed away on his long journey. Raising his son alone, who had shown autistic symptoms since his first birthday, this father used to call his son Peter Pan after seeing someone compare adults with autism to the boy who never grows up. Then came a terminal liver cancer diagnosis and a six-month prognosis. He tried to find a facility to take care of his son, now 26 years old and facing a future left alone in the world, but it was not easy. A program featuring this story was broadcast last March, and at that time, the father called it the "beginning of a drama." Donations poured in, and he found a facility where his son could live in the future. Hearing this interview given by the "Peter Pan Father" before he passed away, while on a train heading to Hwasun, Jeonnam for reporting, made my heart heavy. Are other Peter Pan parents in the world experiencing this kind of "beginning of a drama"? At least, one Peter Pan mother I was going to meet that day was not.

2. Over 20 Years of Caregiving Weight... "Facilities Won't Take Him Either"
The mother of A, whom I met in Hwasun, South Jeolla Province, has lived as a Peter Pan mother while her son with developmental disabilities turned 29 years old. A activity support worker who visits A's family and home takes turns caring for A. Still, A is often left home alone. People around her told her to send her son to a facility, but she said there was no place that would accept him.

[Mother of A: People (around us) say, 'Why don't you leave him at a facility?' But there are actually no facilities where we can leave him. They won't take him. Because he cannot handle his bodily functions like urination and defecation.]

It was because of her son's "challenging behaviors" such as self-harm and harming others. That is how she learned about "integrated care." Launched in June 2024, the "Integrated Care Service for Individuals with Severe Developmental Disabilities" was created for people like A. It was deemed that a separate service was necessary because individuals with developmental disabilities find it difficult to use existing care services, and the caregiving burden on families has become severe. The Ministry of Health and Welfare stated, "It carries the meaning that the state takes responsibility even for those who can be said to be in the most difficult situations regarding care."

3. Promised the "State Will Take Responsibility"... But an Endless Wait
The mother also applied for this service in February and was selected in March. She received a notification that A was suitable as a service recipient and had become a recipient of the daytime group type among the three types of services. However, by September, care for A has not yet begun. First of all, the problem was that care personnel were not being hired. Since care services are considered to have the highest level of difficulty, few people want to work in them. Despite repeated recruitment notices, there were no applicants, and time passed. It was not until late July that she received word that one person had finally been hired. However, three days later, she received another call saying that care would be difficult because the budget for this year had been exhausted.

[Official at the Hwasun Center for Developmental Disabilities (Phone call last July): I think I need to tell you that you will have to wait again.]

After waiting four months and barely managing to hire a care worker, the reality was that there was no money when they were about to start. The care worker who was barely hired quit again in the meantime.

[Official at Hwasun County Office: (Is there any chance of knowing 'when hiring will happen'?) We are in a situation where we just have to wait for a notice.]

4. How Are Budget and Staffing Shortages Being Addressed?
Why did this year's budget run out so early? Hwasun County's capacity to provide this service for the entire year was limited to three individuals with developmental disabilities. A was the third applicant. However, it was said that the budget for three people had already been used up on the two people who were already receiving the service. We also asked the Jeonnam-Gwangju Special Metropolitan City. We were told that "the government allocates the budget based on 'average unit costs'." This means the government does not provide the budget from the beginning to cover the maximum care hours that a single person with developmental disabilities can use. We also asked the Ministry of Health and Welfare. They explained that for the 24-hour individual-type service, which is evaluated as having a higher care difficulty, there are even fewer people willing to work, leaving money unspent, whereas budget shortages occur because service provision is actually taking place in the relatively more utilized daytime group type. The Ministry of Health and Welfare stated that since most local governments across the country are experiencing shortages in the budget for this daytime group type, they will enable local governments to exchange remaining budgets with each other starting this month. I wondered why they shouldn't just allocate the maximum budget from the beginning regardless of the type. I got the answer that "from the fiscal authorities' perspective, they have no choice but to consider the overall execution rate." This was understood to mean what happens if they receive a large budget and cannot spend it all. The problem of a shortage of care personnel is chronic. For example, in the case of the 24-hour type, the target capacity set by the government is 340 people. Given that it operates 24 hours and requires shifts, they say 1,200 care workers are needed. However, the actual number of working personnel is only 541. The Ministry of Health and Welfare is pushing to improve working conditions by increasing the professional allowance paid to them to 200,000 won per month. In monitoring conducted one year after the launch of the project, 45.7% of care workers reported having experienced injuries. Considering the difficulty of such care, it is still uncertain whether such treatment can be called sufficient.

5. High Satisfaction Services... The Need to Enhance Completeness
The evaluation of this integrated care service itself is positive. The government conducted a survey targeting individuals with developmental disabilities and their guardians, and many evaluations showed that they had time to recover from burnout caused by caregiving. Users with developmental disabilities also showed changed appearances, such as emotional stability and alleviation of challenging behaviors. We asked Kim Mi-ok, a professor of social welfare at Jeonbuk National University who participated in the system design and has researched this field, for ways to make things a little better than now. First, she pointed to the "improvement of working conditions for care personnel." She said it must be able to establish itself as a sufficiently decent job, and a culture of gratitude and respect must be created. For the budget, she suggested tearing down the barriers between types and allowing them to be used flexibly for the time being as an urgent measure.

[Kim Mi-ok / Professor of Department of Social Welfare, Jeonbuk National University: How about easing barriers so that the budget can be used flexibly (between types).... We need to enhance the completeness of the system into one that is user-centric and alleviates the caregiving burden of families.]

Conveying this reporting story does not mean that the integrated care service for individuals with severe developmental disabilities is unnecessary, meaningless, or that its budget should be cut. After the first broadcast report went out, YouTube comments included remarks directed at the mother such as, "Be grateful if they do it for you, and if they don't, do it yourself." Seeing those comments reminded me of a phrase from a book I recently read. It said that the moment family caregiving is viewed as a social welfare asset, the state gains an excuse to neglect social welfare. The state taking responsibility means that we share the burden. We have an obligation not to let the story of today, where the "Peter Pan Father" struggled alone, drift away as an old fairy tale that "once upon a time, there was a beautiful story." Why should we do that? The reason is simple: because the story of A's family could become the story of our family.

(Photo: Yonhap News, Source: Kakao Together Donation Page, Produced by SBS Digital News)
※ Please note: This article was translated by AI and may contain errors.