In the administrative audit, Kim Yong-sung, a Gyeonggi-do lawmaker, shed tears because of his "tears."

YTN Radio (FM 94.5) [YTN News FM Wise Radio Life]

□ Broadcast date and time: January 15, 2025 (Wednesday)
□ Host: Announcer Park Gui-bin
□ Castor: Kim Yong-sung, Gyeonggi-do Councilmember

* The text below may differ from the actual broadcast content, so please check the broadcast for more accurate information.

◆ Announcer Park Gui-bin (hereinafter referred to as Park Gui-bin): This is the wise self-governing life time. It's time to find out what the local council is doing to make our neighborhood a good place to live. Today, let's meet on the phone of Kim Yong-sung, a member of the Gyeonggi Provincial Council's Health and Welfare Committee. Hello, Senator.

◇ Gyeonggi-do Councilman Kim Yong-sung (hereinafter referred to as Kim Yong-sung): Yes, hello.

◆ Park Gwibin: Yes, can you say hello to our listeners first?

◇ Kim Yong-sung: Hello, all those who love wise radio life. I'm Kim Yong-sung of the Democratic Party of Korea of Gyeonggi-do Province, whose constituencies are Iljik-dong, Soha 1-dong and Soha 2-dong, Gwangmyeong-si. Good to meet you.

◆ Park Gui Bin: Yes, nice to meet you. Gentleman, it is already last year. I don't think it's been two months yet, but I'm going to ask you about the November administrative audit. You shed tears when you pointed out support for rare patients in the administrative audit. So I wanted to ask you that first. How did you feel?

◇ Kim Yong-sung: In November last year, an administrative audit of the Gyeonggi-do Health Bureau pointed out the lack of management and support for rare diseases. As of September 2024, the number of rare diseases in Gyeonggi-do was 4,296. Gyeonggi Province enacted a self-governing law on the management and support of rare diseases in 2021, but five years later, it has not been properly implementing the project as well as securing related budgets. Seeing this reality, I felt very sorry that I turned away from the province the reality of rare diseases in the blind spot of social care. When I thought of people living in pain every moment, I cried without realizing it.

◆ Park Gwibin: Oh, I see. The Gyeonggi-do Provincial Government has prepared a support ordinance in 2020, but wasn't there any support at all?

◇ Kim Yong-sung: Yes, yes, yes.

◆ Park Gui-bin: I'm curious about the contents of the ordinance at the time, so what kind of answers did you hear at the administrative audit this time?

◇ Kim Yong-sung: Until now, support for rare patients has been provided only with medical expenses through one-on-one matching between the Health Promotion Fund of the Ministry of Health and Welfare and the city and county. However, there is no matching business at all as well as Dobie's own business, and no support plan has been established for rare disease patients. Therefore, Gyeonggi-do Province also acknowledged that support for rare diseases was insufficient. In addition, the Health and Welfare Bureau answered that rare diseases themselves are a very difficult part of the medical field, and I fully understand that. However, as the law stipulates the basis for support for rare diseases in local governments, I think there are certainly issues that can be supported at the level of the province. It is not even possible to figure out the exact number of people with rare diseases. You can conduct a full investigation through collaboration with Bundang Seoul National University Hospital and Ajou University Hospital, which are designated hospitals by the Korea Centers for Disease Control and Prevention, and check what needs actual support through interviews with medical staff of rare patients. In addition, I think psychological healing counseling will be possible. So, I think it will be helpful just to listen to the voices of the hearts of rare patients and their families, not medical counseling on rare diseases like genetic counseling.

◆ Park Gui-bin: Kim Yong-sung, a lawmaker of Gyeonggi-do Province, shed tears during an administrative audit in November when he pointed out support for rare patients and told me what he heard at the time. Have you met rare patients in person?

◇ Kim Yong-sung: I haven't actually met him.

◆ Park Gwibin: Yes, then you must have heard a lot about it?

◇ Kim Yong-sung: Yes, while preparing for the administrative audit, I learned indirectly through documentaries and various materials, and I also felt a lot of that.

◆ Park Gui-bin: Those patients seem to be paying more attention than anything else in the field of medical welfare, but you're working as a health and welfare committee at the standing committee. I think they are interested in those who need a lot of support and pay particular attention to that. What do you think?

◇ Kim Yong-sung: Rare patients experience diagnostic wandering because it is difficult to diagnose, and even if they are diagnosed, they cannot receive treatment because there is no proper treatment. In addition, there are many cases that have not yet been recognized as a rare disease, such as spinal muscular dystrophy. In this case, insurance benefits are not applied or they do not meet the salary standards, so they have to bear the high cost, so they suffer from hardships in life and give up treatment. As you said, rare diseases are very painful not only for the patient himself but also for his family. Therefore, for the care of patients who are suffering from disease, the health care of the guardian is excluded as a subordinate, so the guardian also gets sick. In addition, there are quite a few cases of complaining of emotional difficulties due to limited information and low awareness due to the specificity of the disease. That's why I'm getting hurt a lot by my socially stinging gaze and coldness even though I've been fighting a strange disease all my life. Therefore, there is no opportunity to participate in leisure activities and sleep is difficult, so the quality of life is significantly lower. They have a hard time in their daily lives. We hope that realistic support for people with rare diseases and their families will be introduced as soon as possible.

◆ Park Gui-bin: Yes, he talked about the reality of the rare disease himself and his family. That's why you're paying attention to that because you agree that you need support, and recently, you've also proposed an ordinance on supporting the audiovisual disabled. What's this about?

◇ Kim Yong-sung: According to Article 2 of the Enforcement Decree of the Welfare of Persons with Disabilities Act, this ordinance is classified into 15 types of disabilities in Korea. However, audiovisual disabilities are not recognized as an independent type of disability because they do not belong to these 15 types of disabilities. In our country, one of sight and hearing is regarded as a captain's love, and the other is classified as a manager's love. In other words, there is virtually no integrated and professional support for audiovisual disabilities with a structure in which only services corresponding to claims are supported. If you mix red and blue, a new color called purple comes out. The same goes for audiovisual disorders. I think it should be recognized as an independent third type of disability, not just a combination of blind and hearing impairment. Therefore, the government has already strengthened the welfare system by enacting the Development Disability Act separately in recognition of the specificity of people with developmental disabilities. Referring to this, I suggested the government to enact a special law so that audiovisual disabilities can be recognized as an independent type of disability and provide customized support and rights guarantees. In addition, Gyeonggi-do has only operated a one-time event as a social welfare fund for support projects for the audiovisual disabled. In the proposal, we also included the opinion that we should devise a support project that will actually help and contribute and set up a budget accordingly.

◆ Park Gui-bin: Yes, we enacted self-government laws for people with audiovisual disabilities in 2020, and Gyeonggi Province seems to have a bad budget for practical support projects. To provide such support, you need to secure a budget. Is it a little difficult to secure the budget?

◇ Kim Yong-sung: I don't think it's easy to secure a budget in reality. Gyeonggi Province enacted self-governing laws for audiovisual disabilities in June 2020, but there is no real support project or budget so far. So far, only one-time events have been held using the social welfare fund. Since it is organized and operated as a fund, it is difficult to expect business continuity, and it is difficult to see a one-time cultural event as support for the audiovisual disabled. Unfortunately, there is no separate budget for the audiovisual disabled in 2025. Gyeonggi-do Province will have to actively implement the project and secure the budget even through an extra budget.

◆ [Park Gwibin] Yes, that's right. You seem to be particularly interested in the socially underprivileged, as well as the story of rare patients and the contents of support for the audiovisual disabled. We need more attention in our society. Can you say something?

◇ Kim Yong-sung: If you look around us, there are quite a few people who are in the blind spot of the current system and management, such as rare patients and people with audiovisual disabilities. If we don't care, we have to step up and help them. I think it is a mature society to relieve the burden of those living in pain every day and share it with them. Institutional grounds and practical support are needed to help the socially disadvantaged in the blind spot of care enjoy equal and legitimate rights as members of our society. I hope this will be an opportunity for our listeners to take this opportunity to see if there are anyone around us who needs help.

◆ Park Gui-bin: Yes, I'm talking to Kim Yong-sung, a Gyeonggi-do lawmaker. I'll also briefly ask you about your district. You're in Gwangmyeong, Gyeonggi-do, and you secured a special adjustment grant of 3.05 billion won for Gwangmyeong citizens' convenience? So what's this budget for?

◇ Kim Yong-sung: Four policy projects will be implemented. First, we secured a budget of 1.4 billion won for the construction of the Iljik-dong Culture and Arts Center. Iljik-dong had difficulties in the cultural and leisure life of residents due to the lack of public culture and arts facilities, even though 22,000 residents lived around KTX Gwangmyeong Station. This distribution is expected to play a major role in creating a high-quality culture and arts environment for Gwangmyeong citizens. It also secured 650 million won for remodeling at the Children's Mobile One-person Youth Activity Center. This performance practice room and cooking class will be newly created. In order to increase safety and efficiency, it plans to restructure the space and actively reflect the opinions of teenagers to prepare a mini hideout space. There are two more. In addition, 500 million won in the floor-type pedestrian traffic light project and 500 million won in the budget for installing AI smart safety breakers in child protection areas are secured, which is expected to contribute to the establishment of traffic safety in Gwangmyeong-si. And in the future, we will focus more on securing additional financial resources so that we can promote current projects without any problems.

◆ Park Gui-bin: Yes, there is one essential question we must ask the lawmakers of Gyeonggi-do Province. Senator, what's the best song in my life? What song do you have that represents my life?

◇ Kim Yong-sung: The masterpiece of my life is Yoo Jeong-seok's Jilpung-gado. If you listen to the title, you might not know it, but if you listen to one line, it's so famous that almost no one knows it. It was used a lot as a cheering song for college sports groups and also as an animation OST. Personally, it's a song that I really like. If you look at the lyrics, like the title, it says that even if a rough wave comes with a strong wind-like container, you will not give in and run. I think its unique power will give many people the power and passion to try again.

◆ Park Gwi-bin: Yes, I see. He described it as a masterpiece of my life. The word "masterpiece" is similar to "ding," so people say it often. Yoo Jeong-seok's storm and wind are also the masterpieces of Kim Yong-sung's life. I'm going to give you a song soon. Senator, thank you for your precious time today.

◇ Kim Yong-sung: Yes, thank you.