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Sharing the Burden: The Way to Prevent the Tragedy of Families with Developmental Disabilities
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Sharing the Burden: The Way to Prevent the Tragedy of Families with Developmental Disabilities
  • Park Se-hee
  • 승인 2022.06.23 17:04
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 On May 23, a series of unfortunate incidents occurred in which parents directly killed their children with developmental disabilities. In Seoul, a woman in her 40s jumped from an apartment with a six-year-old son with developmental disabilities and died.  In Yeonsu-gu, Incheon, where a woman in her 60s died by feeding sleeping pills to her daughter, who was in her 30s. Korean Parents’ Network for People with Disabilities(KPNPD) estimated that at least 20 similar cases have been known in the past two years. Why do crimes such as family murder occur in families with developmental disabilities?

 

In Korea, Article 2 of the Act on the Guarantee and Support of the Rights of Persons with

Developmental Disabilities defines a person with developmental disabilities as follows:


A. A person whose intellectual development is insufficient or incomplete and thus has considerable difficulty in handling tasks and adapting to social life


B. A person who is severely restricted from daily life or social life due to autism and needs the help of others

 

"Let the child die a day before me."


 This common saying by parents with children with developmental disabilities reveals the sad reality of the state of caring for the disabled in Korea. According to the 2020 survey on the disabled conducted by the Korea Institute for Health and Social Affairs (KIHASA), 32.1% of all disabled people need support. 78.4% of people with autism and 62.1% of people with intellectual disabilities need help, and the demand for care of people with developmental disabilities is twice as high as that of ordinary people with disabilities. Looking at the people who help, the proportion of parents is overwhelmingly high for people with developmental disabilities. Of the total disabled, about 20.8% received help from their parents, but 66.4% of the intellectually disabled and 76.3% of the autistic disabled are receiving help from their parents.

 

▲ Demand for care by type of person with disabilities (source = KIHASA)
▲ Demand for care by type of person with disabilities (source = KIHASA)


 Parents agree that they did not get the necessary information and did not receive enough support while raising children with developmental disabilities. The government and local governments provide various services such as developmental rehabilitation services and daytime activity support services, but there are many cases where they have to wait for more than a few months and fail.

 

 Lim, who has a son with a developmental disability, said, "There is a limit to finding information on support services," adding, "The government must provide directions in advance for families with disabilities, just as a notice that comes when entering elementary school and going to the army. Now, when a disabled person is born, parents use 'only' care." We are people, but I can't even imagine having a cup of coffee with my friend, he said. "The state should actively intervene to strengthen the care system for the disabled."

 

 To solve the problem of caring for the disabled in Korea, it is necessary to first identify the causes of difficulties experienced by families with disabilities. According to the Korea Disabled people’s Development Institute's "Research to Prevent Suicide of Disabled and Disabled Families," psychological shocks, economic difficulties, institutional contradictions, and social isolation caused by insufficient services were cited as the causes of extreme choices.

 

▲ KPNPD are holding a demonstration calling for the guarantee of the rights of people with developmental disabilities (source = hani.co.kr)
▲ KPNPD are holding a demonstration calling for the guarantee of the rights of people with developmental disabilities (source = hani.co.kr)


 As the study shows, the most urgent thing is to improve the current system in which only the family bears full care to prevent the tragedy of families with developmental disabilities. They say that the government and local governments should diversify and specialize in services provided by the government and local governments and create a tight social safety net to meet the needs of families with a social safety net. Policies such as the detailed composition of the service delivery system, expansion of activity support services for disabled people who need 24-hour support, and differential payment of allowances for activity support personnel should be established.

 

 Organizations with disabilities have also continuously demanded customized services according to user characteristics. Yoon Jin-chul, secretary-general of KPNPD said, "Not all disabled people need a 24-hour support system. We ask disabled people who need up to 24 hours a day to think about how to design and support that time at the national level.” He added, "Developmentally disabled people who can work during the day should support income activities through support employment, and disabled people who are deemed difficult to work should not only be given other meaningful activities, but also need support at home in the evening."

 

 Some say that measures for families with developmental disabilities, such as psychological support, should also be strengthened. Seo Dong-myung, a professor of social welfare at Dongdeok Women's University, said, "The family of the developmentally disabled suffers from extreme depression, but emotional support has been insufficient in the past," stressing, "We need to strengthen psychological counseling services and provide various support to suit the needs of our families." Some point out that the budget for welfare for the disabled should be increased to improve related systems. In 2017, the ratio of Korea's budget for welfare for the disabled to GDP was 0.6%, which is far less than half of the average (2.02%) of OECD member countries.


 In the end, the problem of caring for the disabled is constantly repeated unless the government actively takes action and solves it. Therefore, organizations for the disabled, including the Seoul Solidarity for the Elimination of Discrimination against the Disabled, set up a memorial altar in front of the Seoul Metropolitan Council on May 30 in memory of those who died. They are still protesting against the National Assembly and the government to establish a 24-hour support system for the developmentally disabled and secure a budget for supporting facilities.

 

Article 10 of the Constitution of the Republic of Korea


Every nation has its value with the dignity of human beings who have the right to seek happiness.
The country has the fundamental human rights of individuals and undertakes efforts to ensure these.


 Article 10 of the Constitution of the Republic of Korea stipulates the people's right to pursue happiness. However, the situation is different for people with developmental and severe disabilities and their families. People who have not been able to endure excessive responsibility and biases toward individuals and families suffering from severe disabilities are failing everywhere, but the country is still far away from offering support. The interest and efforts of all members of society should continue to make Korea a country that recognizes everyone's happiness.


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