Jung Soon-kyeong’s day starts with changing the diaper of her 18-year-old daughter Cho Hye-won. She then spoon-feeds, washes and runs every errand for her as her sole, round-the-clock caregiver.
Brain lesions mean Cho has severe paralysis. And now, Jung feels both she and her daughter are trapped in their home, cut off from the world, since the coronavirus outbreak.
“Hye-won became more anxious after her small outdoor activities were restricted because of the virus,” Jung said, adding her daughter has become more clingy, and feels distressed when separated from her. Before the pandemic, she used to go to day care centers for the disabled and take swimming lessons, but not anymore.
“I also felt depressed when we had to stay home for months,” the mother added.
Fortunately, the school reopened about a month ago and Cho now attends in-person class three days a week and takes online classes for two days.
“I can see my daughter getting lost quite often during online classes because face-to-face interaction with teachers through body language and eye contact is what she needs, as she can’t speak,” said Jung, who serves as the vice president of the Seoul branch of Korean Parents’ Network for People with Disabilities, which has 15,000 members nationwide.
Life has been hard for those caring for their loved ones with disabilities at home. But the ongoing coronavirus outbreak has frayed the fragile support network that families have built to carry on with the demanding life, pushing them to a new level of hardship.
For some, it is a life-or-death crisis.
Last month, Jung’s group grieved the death of a member family in the southern city of Gwangju.
On June 3, a 59-year-old single mother took her own life with her son, 24, who had a developmental disorder. Her hardships had worsened when she had to take care of her son by herself 24/7, as day programs for adults with disabilities were closed since February due to the COVID-19 pandemic. She often received complaints from neighbors about noise that the son made. A similar case had taken place on Jeju Island in March.
The cases shed light on how the government’s health care services for the disabled can fail in a time of an unprecedented crisis.
“I understand what made her do such a sad thing. As a parent of a child with disability, you ask yourself the same question over and over again. ‘Will my daughter ever be able to live on her own?’ and you come to the same answer: ‘No.’” Jung said.
The situation gets more difficult when children with severe disabilities grow too old to attend school and professional caregivers shun hard work dealing with adults.
“Only if the social system is sound enough to protect the rights of disabled individuals to live like human beings without harsh discrimination, would I not worry too much,” she said.
To Jung, it seems that three options, all undesirable, lie ahead when children become adults -- sending them to long-term care facilities; families providing round-the-clock care themselves; or homelessness.
After the recent suicides brought increased attention to those caught in a blind spot of the state welfare system, there have been growing calls for an amendment of the Act on Activity Assistant Service for Persons with Disabilities.
The law, which was enacted in 2011, aimed to raise the quality of life of people with disabilities by helping them to live self-sufficiently and by easing the burden on their families through activity support allowance.
Beneficiaries are able to hire professional caregivers with a government-issued voucher for 4 hours a day on average and up to 16 hours depending on the severity of the disability, social activity participation and living conditions. Beneficiaries are required to pay between 4 percent and 10 percent of the labor cost, or up to 300,000 won ($250) a month while the government covers the remainder.
Rep. Jang Hye-young of Justice Party is one of five lawmakers who proposed a bill to revise the law from the new 21st National Assembly.
Jang’s bill aims to extend the assistant service time for single-person households, families in which everyone has a disability, and people with very significant intellectual and physical disabilities.
The bill also proposed the government offer social welfare services to disabled individuals who are not eligible for benefits from the current activity assistant service when the national crisis alert is raised due to emergency situations such as infectious disease outbreaks or natural disasters.
“Among some 380,000 disabled people who need the help of others to eat, go to toilet or take a shower, only 90,000 people were able to receive the government’s service through the budget allocated to the Ministry of Health and Welfare,” Jang said.
The ministry’s budget for disability support grew 17.7 percent on-year to approximately 3.27 trillion won ($2.73 billion) in 2020.
But the budget for people with developmental disorders has been cut down from 91.6 billion won to 81.6 billion won, according to a third extra budget approved by the parliament on July 3, sparking outcry from the community.
The ministry attributed the budget cut to the decreased demand for after-school care service due to COVID-19-led closure of schools and welfare facilities. But Jang says this is the wrong conclusion.
“As you see from the deaths of a family with developmental disorder, demand for services has not been reduced. The responsibilities have been delegated to family members,” Rep. Jang said.
Lee Jun-ki, an activist at the Solidarity Against Disability Discrimination group, said the country has taken a huge leap forward in terms of expenditure for disability issues compared to 10 years ago.
But Korea still lags far behind OECD countries and has a long way to go to grasp the need of them.
“It’s like the social welfare system just started to support them to live a life that they should have enjoyed already.”
By Park Han-na (firstname.lastname@example.org