24/7 support system needed for independence of disabled: experts

59.8% of parents with disabled children thought about committing suicide: survey

Representatives of Korea Parents’ Network for People with Disabilities demand a support system to assist people with developmental disabilities to be able to stand on their own feet during a protest in front of the Government Complex Seoul on Jan. 9. (Newsis)

Experts and activists have repeated their calls for a more long-term, attentive care system for those with disabilities to prevent further tragedies in the wake of another murder-suicide by the parent of a disabled child.

On Sept. 16, 2023, a family of five was found dead in their home in Yeongam, South Jeolla Province, after the father killed his wife, his three sons with developmental and physical disabilities and himself.

On Friday, a man in his 40s was found dead alongside the body of his 10-year-old daughter, who had a brain lesion disability that made it difficult for her to move around without a guardian's help, in Seodaemun-gu, western Seoul.

“While these parents may look like irresponsible, bad parents, it is Korean society and its lack of a support system for those with disabilities that made them this way,” Hwang Sun-won, an activist from Korea Parents’ Network for People with Disabilities, told The Korea Herald on Monday.

“With the current support system provided by the government, it is extremely difficult for disabled children to live their lives even when their parents pass away in the future, which is what these parents worry about the most.”

According to a 2022 survey of 4,333 families of those with disabilities conducted by Rep. Kang Sun-woo from the Democratic Party of Korea, 59.8 percent of the parents who responded said they had thought about committing suicide.

Of these parents, 56.3 percent cited the burden of having to provide lifelong support as their reason, followed by 31.1 percent of parents dealing with physical and psychological difficulties from caregiving and 6.7 percent with financial difficulties.

In a survey conducted by the Ministry of Health and Welfare in 2023, out of 981 parents of children with disabilities surveyed, 158 stated that they had “seriously thought about committing suicide over the past year,” with 29 stating that they had arranged detailed plans to put it into action and 9 admitting to have attempted it.

On average, these parents were also found to have mild depression symptoms, with their average depression scale score being 18.2, which is above the threshold for a depression diagnosis -- 16 or higher.

To lessen the burden of providing lifelong care and support, professor Park Seung-hee from Ewha Womans University’s Department of Special Education said there was a need to have around-the-clock services available for those with disabilities to be able to live their daily lives.

“While providing housing and job opportunities are also important factors in guaranteeing independence for those with physical and developmental disabilities, they also need human assistance in going on with their daily lives,” Park told The Korea Herald.

This year, the government said it would offer a 24-hour, one-on-one care service for those suffering from “severe developmental disabilities” to provide better support for their families. However, as this service will only cover up to 340 people, Hwang says that this is “far too little compared to the number of people who need assistance.”

According to a survey conducted by the Korea Institute for Health and Social Affairs in 2022, up to 22.5 percent of those with developmental disabilities require assistance in all parts of their daily lives, and the 340 with severe developmental disabilities expected to be covered by the government's proposed service only account for up to 0.1 percent of the total numbers. In 2022, up to 263,311 people were recorded to have developmental disabilities.

Professor Lee Bong-joo from Seoul National University’s Department of Social Welfare referenced the US state of California's support and caregiving system for those with developmental disabilities as a model South Korea can adopt.

“California’s Department of Developmental Services runs 21 regional centers across the state to assist people with developmental disabilities, such as assisting with leisure activities, providing housing, education and employment opportunities while also assisting with vocational services,” said Lee. “A solid support system like such that assists a disabled person’s life is needed in Korea to lessen the burden on parents with disabled children.”

By Lee Jung-joo(lee.jungjoo@heraldcorp.com)