Current debates regarding deinstitutionalisation for disabled people in South Korea

Abstract

The process of deinstitutionalisation gained momentum in the late 20th century, driven by disability rights movements and increased awareness of the harms of institutionalisation. This paper provides an overview of deinstitutionalisation in South Korea, focusing on the transformation of large disability residential facilities since the 1970s, with efforts towards promoting independent living. Current debates highlight conflicting perspectives among stakeholders. Advocates, primarily disabled individuals, support accelerated deinstitutionalisation for its benefits in autonomy, social integration, and improved quality of life. However, oppositions from families and service providers express concerns about care gaps and the need for specialized support for people with higher support needs. The paper underscores the importance of establishing a consensus on deinstitutionalisation objectives and proposes multidimensional alternatives, including legislative reforms, expanded community services, and improved facilities. Fostering social agreement is identified as pivotal for successful deinstitutionalisation and the well-being of disabled individuals.

Keywords:

• Deinstitutionalisation
• disabled people’s movement
• South Korea
• Independent living

Overview of deinstitutionalisation

For past centuries, disabled people had been placed in institutions. In the late twentieth century, however, this approach was changed together with the growing understanding of the harm caused by institutionalisation and new movements pushing for equal rights for disabled people. In Scandinavia, the UK, USA, Canada and Australia, the movement towards ‘deinstitutionalisation’ for disabled people started in the 1960s and 1970s, advocating for disabled people to live in the community instead of institutional settings (Moon and Go 2020). The rights of disabled people to equality and inclusion have been recognised at the international level such as the UN Convention on the Rights of Persons with Disabilities. The Article 19 of this Convention specifically states the right of disabled people to live independently and receive appropriate community-based services (Oh et al. 2019).

In the past, deinstitutionalisation was initially associated with the idea of transitioning to community-based living. However, its meaning has expanded over time (Noh et al. 2022). Deinstitutionalisation includes personalised support and extensive systemic changes at both the local and societal levels that support autonomous decision-making and full participation in society (McCarron et al. 2019).

Brief history of deinstitutionalisation

In South Korea, many institutions that were originally established as orphanages during the Korean War in the 1950s underwent a transformation into disability facilities during the 1970s and the beginning of 1980s. Numerous large-scale residential institutions for disabled people were built during this period and continued to operate. Additionally, with the hosting of the 1988 Seoul Olympics, those institutions were relocated to the outskirts of the city, leading to an expansion of large-scale institutions.

Since 1987, deinstitutionalisation has been pursued as part of human rights movements, with revelations of abuses and human rights violations in disability residential facilities (Noh et al. 2022). From the late 1980s, there was a significant increase in the establishment of large-scale community facilities such as disability welfare centres. In the 1990s, smaller community-based facilities such as day care centres and short-term care facilities were introduced.

In the 2000s, the Western deinstitutionalization and independent living movements gained attention, and the social model of disability was introduced. During this period, the paradigm of Korean disability welfare policy gradually shifted from rehabilitation to an emphasis on independent living. The policy demands of disabled people, including the right to self-determination, became prominent. This shift ultimately led to a comprehensive amendment of the ‘Act on Welfare of Persons with Disabilities’ in March 2007 (Noh et al. 2022).

The Act on Activity Assistant Services for Persons with Disabilities was introduced in 2011, following the enactment of the disability pension system in 2010. These legislations significantly contributed to the deinstitutionalisation and promotion of independent living for disabled people (Noh et al. 2022). During this period, the ‘Act on Welfare of Persons with Disabilities’ was revised again in 2012, promoting the policy of downsizing large-scale facilities with the aim of reducing facilities with more than 100 residents and preventing the establishment of facilities with more than 30 residents because large-scale facilities struggled to meet the individual needs of users, leading to negative effects such as reduced autonomy and privacy invasion. Despite these concerns, previously existing facilities with more than 30 residents are still being maintained (Kim 2018).

In 2017, the Moon Jae-in government adopted ‘creating an inclusive society for the realisation of the independent living of disabled people in local communities’ as a national task and presented a system for supporting the deinstitutionalisation of disabled people through the ‘Fifth Comprehensive Plan for Persons with Disabilities (2018–2022)’ (Noh et al. 2022). In 2018, the Ministry of Health and Welfare announced a ‘community care’ policy that integrated social services tailored to the needs of older people, disabled people, and individuals with mental health conditions, aligning it with the deinstitutionalisation policy. Subsequently, in August 2021, the central government announced the ‘Roadmap for Supporting the Independent Living of Deinstitutionalised Disabled people’, a medium-term plan for supporting the independent living of deinstitutionalised disabled people, and has been implementing a three-year pilot project since 2022 to support the phased transition to independent living for disabled people and self-sufficiency support under Yoon Suk-Yuel government (Noh et al. 2022;Choi 2022). However, the large-scale institutions from the 1970s are still being operated even today (Kim 2018). It seems like the government supports deinstitutionalisation, but the current Korean government is not taking any action.

Current debates about deinstitutionalization

Despite the changes and expansion in social welfare services in Korea, deinstitutionalisation remains a core issue that needs to be addressed. Ironically, there is sharp conflict between disabled people and stakeholders such as families of disabled people regarding deinstitutionalisation.

First, disabled people argue that the deinstitutionalisation policy should be accelerated. deinstitutionalised disabled people reported that they are experiencing enhanced capabilities through opportunities to freely pursue what they desire, participate the community, and demonstrate their abilities (Cha, Kim, and Jo 2022). A study tracking deinstitutionalised individuals from 2019 to 2022 reported an increase in their social integration activities, more choices in daily life, increased autonomy, and improved quality of life (Park et al. 2023). According to the ‘Report on Monitoring of Independent Living Individuals in the Pilot Project to Establish a Community-based Support System for Residential Disabled Persons’, high levels of satisfaction were reported among disabled people who experienced independent living (Ministry of Health and Welfare, 2022). They cited reasons such as having freedom and personal space, opportunities for self-realisation, such as attending colleges and having peer counselling. Their daily routines are ‘regular and systematic’. In the evenings and on weekends, they spend their leisure time like other non-disabled people, watching YouTube on their smartphones, attending church, shopping, and taking walks (Min 2023). Those living in the community after deinstitutionalisation are shown to have high satisfaction and active social lives, contrary to concerns. The National Human Rights Commission of Korea pointed out that the question should not be whether disabled people can live alone, maintain their health without any harm, and fully protect themselves, but rather what is needed for them to live in a community that centres around non-disabled people (Choi 2022)

In contrast, there are concerns that deinstitutionalisation without a 24-h care system in the community may create a care gap for individuals with higher support needs (Noh et al. 2022). Especially, parents or family carers opposing deinstitutionalisation argue that residential facilities are more suitable environments for disabled people to live in compared to the community, especially those who do not have any family and need 24-h care. They insist that these facilities provide specialised care and safe environments for individuals who are at risk of experiencing harmful conditions (Son 2021). Organisations such as the Korea Association of Disability Welfare Facilities and representatives of parents of individuals using disability residential facilities raise concerns that the current laws related to deinstitutionalisation do not align with reality and may lead to human rights blind spots, leaving disabled people without proper support. They also point out that facilities, due to their group living settings, make it easier to monitor and prevent human rights violations from external or internal sources. But, if disabled people live independently in the community, with only one caregiver to support them, there is a weakness in the management network, which might result in inadequate support (Hwang 2021).

Service providers also are opposing deinstitutionalisation. For instance, the Committee on Social Welfare of the Catholic Bishops’ Conference of Korea also expressed concerns about the contents of the Ministry of Health and Welfare’s ‘Roadmap for Supporting the Independent Living of Deinstitutionalised Disabled people’. Due to the strong cultural stigma surrounding disability in Korean society, the Committee argues that there remains a prevailing objection to special education schools within communities, day care facilities, and independent living homes for disabled people. The implementation of inclusive education system is also a significant challenge. Unfortunately, there is currently no practical resolution to address this cultural stigma. As a result, service providers believes that deinstitutionalisation will place disabled people with higher support needs in more challenging situations (Jung, 2021). They criticised the government’s uniform and coercive deinstitutionalisation policy that does not adequately consider the challenging reality faced by people with profound developmental disabilities, and their families, who are in difficult situations and require intensive care but lack sufficient support systems in the local community. Especially, they emphasised that disabled people whose parents cannot manage them in the community, or families who are unable to care for those disabled people due to their own deteriorating health or death, have the undeniable right to use disability residential facilities. They argued that it cannot provide an appropriate solution to the already emerging issue of an aging disabled population.

Conclusion

The argument in favour of institutionalisation for individuals with high support needs with communication difficulties contradicts the principles of human rights and undermines the proposition of the UN Convention on the Rights of Persons with Disabilities, which states that disabled people should enjoy their rights on an equal basis with others, regardless of their impairment type (Choi 2022). We argue that we should strive to make our community accessible to various individuals, including disabled people, rather than maintaining a community that discriminates and excludes disabled people.

So, we suggest that various stakeholders should reach a consensus on the objectives and ideals of deinstitutionalisation that they aspire to. Subsequently, they should propose multidimensional alternatives, including the enactment of legislation, expansion of local community services, and improvement of existing local facilities. Additionally, a wider social agreement in local communities and stakeholders is necessary on taking into consideration disabled people’s socio-ecological environment.

Disclosure statement

No potential conflict of interest was reported by the author(s).