A Memorial Altar for People with Developmental Disabilities in Front of Yongwadae... Parents' Unchanging Cry

Developmentally Disabled Individuals and Families Enduring Care Stress Without Government Aid
Political Response Amid Negative Public Opinion... Parents' Coalition "Policy and Legislation Lack Specificity"

"Deputy Prime Minister for Economy Choo Kyung-ho, guarantee the budget for the rights of persons with disabilities!"

At around 8 a.m. on the 30th, persons with disabilities gathered in front of the 'Memorial Altar for Developmental and Severe Disabilities Disaster' installed on the platform of Samgakji Station, shouting slogans. This altar was set up to commemorate developmental disabled individuals who have recently died one after another. Commuters glanced briefly at the altar before hurrying on their way. Only 18 supportive post-it notes were attached to the altar.

Through the installation of the altar, parents of developmental disabled individuals have begun their struggle. Although the altar is scheduled to operate until the 2nd of next month, the National Solidarity for the Elimination of Discrimination against Persons with Disabilities (Jeonjangyeon) and the National Parents' Solidarity for Persons with Disabilities (Bumoyeondae) announced plans to extend the altar installation and struggle until July. On this day, disability organizations plan to additionally install altars in front of the Seoul Metropolitan Council and Incheon City Hall Station.

Past: The Reality of Developmental Disabilities Highlighted by COVID-19

The reason they are taking to the struggle is due to the tragic reality of developmental disabled individuals that has continued from before. Approximately 247,000 developmental disabled persons nationwide and their families have long been in difficult situations due to lack of care services from the state.

Their situation was highlighted because of COVID-19. Cut off from the outside, they received no help, and families and developmental disabled individuals endured all the stress from caregiving. Since 2020, there have been nine known deaths of developmental disabled individuals in Seoul alone. In response to the ongoing news of deaths, the Parents' Solidarity has urged since 2020 that "developmental disabled persons are heading toward a welfare canyon amid the national disaster situation caused by COVID-19" and called on the Moon Jae-in administration to "prepare effective measures so that developmental disabled persons and their families are not excluded even in disaster situations."

Present: Even with the Lifting of Quarantine Restrictions... Reality Remains Difficult

[Image source=Yonhap News]

Although COVID-19 quarantine measures are being lifted, the situation for developmental disabled individuals remains challenging. On the 23rd, a case occurred in an apartment in Seongdong-gu, Seoul, where a woman in her 40s and her son with developmental disabilities died. This incident led disability organizations to set up memorial altars.

However, public opinion toward disability organizations is negative due to continued subway delay protests and other reasons. On the 26th, during the altar installation process, physical clashes occurred with subway security personnel, continuing the friction. A representative of a disability organization said, "We are aware that public opinion is not favorable," but added, "If we do not act like this, no one listens, and persons with disabilities continue to die amid indifference and hatred."

Future: Responsive Political Circles... Will the Environment for Developmental Disabled Individuals Improve?

The political sphere is responding to the voices of parents of developmental disabled individuals. On the 29th, the National Assembly plenary session passed the amendment to the 'Act on the Rights Guarantee and Support for Developmental Disabled Persons' (Developmental Disabilities Act). As a result, two years after the law is promulgated, integrated care services will be provided to the most severely disabled developmental persons at 17 developmental disability support centers nationwide. On the 3rd, the Presidential Transition Committee also announced plans to expand the '24-hour care model for the most severely disabled developmental persons,' as well as to expand developmental disability base hospitals and behavioral development promotion centers.

However, disability organizations point out that the policies and laws lack specificity. In the case of the Developmental Disabilities Act, there is no agreed definition of the most severely disabled developmental persons. The policies promised by the Transition Committee also lack concrete plans. A representative of the Parents' Solidarity said, "Developmental disabled persons and their families urgently need a 24-hour care system," and added, "We hope that the voices of parents of developmental disabled persons will be answered with concrete policies and laws."