Hello. I’m Kim Ae-ja, Head of Chungbuk National Center For Disabled Children and Developmental Disabilities. The Center was established in 2016 as a public institution affiliated with the Korea Disabled People’s Development Institute under the Ministry of Health and Welfare. The center was established for supporting the developmentally disabled not to be neglected or undervalued as members of society. While those with physical and sensory disabilities have been provided with a variety of welfare services, the developmentally disabled have been alienated due to their lack of self-advocacy and self-determination. There has been a continuous and steady demand for advanced welfare services for the developmentally disabled, and therefore the center was established in 17 provinces under The Act on Guarantee of Rights of and Support for Persons with Developmental Disabilities, implemented in 2016. We are doing projects like customized support service and introducing legal guardians towards the developmentally disabled in Chungcheongbuk-do.

  The center provides a customized support service, helping the developmentally disabled to use necessary programs, according to the characteristics of individuals. The center makes customized plans by considering their individual lifecycle and desires. Also, the center offers protection of legal rights and may also introduce a legal guardian service to prevent the violation of rights in cases of legal troubles and signing contracts. Furthermore, the center provides daytime and afterschool programs to create a meaningful time for the disabled. We do a lot of supporting projects not only for the disabled, but also for their families. We support family rest programs to restore them physically and emotionally when they become exhausted by long-term care. Moreover, the center is conducting parent educational support projects giving parents beneficial information on the developmentally disabled. We, in particular, have held educational seminars, linked with Chungbuk National University Hospital, for parents of the developmentally disabled all over the country. Besides this, projects like improving social awareness campaigns and storing information have been conducted.

  The number of the developmentally disabled continues to increase, but unfortunately their employment rate is far lower than that of other kinds of disabled people. According to the research conducted by the Ministry of Employment and Labor and the Korea Employment Agency in 2020, the employment rate of the developmentally disabled over 15 years old is only 24 percent. Although the improved program of disability awareness and the employment quota system for the disabled has been enforced, some companies still disregard the law and opt to simply pay a small fine. In addition, even if the disabled get a job, they are usually hired as low-wage and contract workers for cleaning or menial tasks. The disabled who graduated from school, but are yet unemployed, could be isolated at home or in a center for disabilities and become estranged from society. These cases of isolation sparked from unemployment, have kept them dependent on their parents and put excessive strain on the whole family. For this reason, it is important that the developmentally disabled get jobs and we, therefore, support employment projects wholeheartedly. 

  Suffering from a developmental disability has a profound effect not only on the disabled but on their family as well, for their entire lives. Through the media, you might see many tragic articles where families with developmentally disabled members commit suicide together. Furthermore, 555 parents of developmentally disabled children kicked off a head-shaving protest campaign, desperately demanding a 24/7 care system in order to share the caregiver burden with the national welfare system. Almost all families with developmentally disabled members are under consistent pressure. They are slowly getting tired of the long and hopeless race. Families of the developmentally disabled are struggling with hurdles in economic and social activities and several major challenges including lack of rest, and concern over what will become of the children after their death. According to the research, 1 out of 4 parents with developmentally disabled children are not able to rest, because of caregiving, even a day in a month and it could lead parents to extreme frustration and depression. These are the reasons why the center supports a family rest service as a remedy.

  Due to the outbreak of COVID-19, institutions for the developmentally disabled like schools and support centers are paused. Daily routine caring and healing for the developmentally disabled has been disrupted and therefore, the developmentally disabled and their families, especially the profoundly disabled, have taken up the heaviest burden ever. I think a consistent caring service system should be conducted because the developmentally disabled deserve a better life and rights similar to those of non-disabled persons, in the COVID-19 era. Therefore, the government and local communities have to fulfill a proper care system including the desires of the disabled and their families. To improve the care system, the center for developmental disability should search for what is desperately needed by the disabled and then properly maintain a welfare service tailored to their needs. Taking the COVID-19 emergency, in particular, it is important that the developmentally disabled who are struggling with communication should be able to precisely understand the guidelines of COVID-19 and be enabled to express their desire exactly. Moreover, the care system should help them to know all the necessary information-like the COVID-19 quarantine guidelines and necessary precautions. In addition, it should offer some guidance on how to cope with the frustration of staying alone at home and the aggressive behavior that may arise as a result. Moreover, ‘deinstitutionalization’ for the disabled has been discussed as the main policy for supporting the disabled in recent days. Most of the disabled people who live in 24/7 centers are developmentally disabled. We have to discuss this policy in terms of how to support the disabled and their families after they get out of these facilities, rather than enforcing reckless and unprepared actions.

  Fortunately, social prejudices and stereotypes against the disabled are changing steadily. However, room for discrimination against the developmentally disabled still exists. They often receive icy stares in public places due to their involuntary behavior like mumbling and fidgeting. The disabled and their families comment that they feel upset as strangers stare at them with curiosity. Therefore, improving social awareness for the disabled has to be improved. Attention to the developmentally disabled is increasing through the latest drama series ‘Extraordinary attorney Woo,’ and I hope that attention would not fade away like an illusion. If we would understand the characteristics and types of developmental disability, social awareness would be converted to approve the fact that the disabled are different, not less and then those icy stares might be melted. There is no reason that the disabled should suffer from discrimination and structural unfairness. We hope that you would help to develop human rights sensitivity and perspective about the disabled and join us in seeking better ways to improve the circumstances of the developmental disability as well.