1 Background

In South Korea, it is estimated that 1.04% of children under the age of 18 have more than one type of disability, as defined by the Child Welfare Act. Although the child population has declined by more than 2.5 million in the past decade, the number and percentage of children with disabilities are increasing (Kim et al. 2022). Disability is a significant factor contributing to complex care needs. Children with disabilities may require ongoing healthcare management, specialized care, and educational support, as well as physical, occupational, or speech therapy to address their underlying conditions and limitations in their abilities. Additionally, they may need continuous assistance addressing emotional, developmental, or behavioral challenges (Ricci, Kyle, and Carman 2020). Additionally, parents and families of children with disabilities are fully responsible for their care and developmental needs and experience psychological, emotional, and economic burdens, role and family conflicts, and health problems resulting in a lower quality of life (QoL) (Kang 2016; Whiting 2012). The issues of QoL and the care burden of children with disabilities in families are constantly highlighted, but the lack of social understanding of disabilities as well as a lack of material and human resources continue to be challenges (Kang 2016; Kim and Kim 2015).

Children with disabilities are frequently subjected to double discrimination in terms of social inclusion because of their status as disabled and being children, placing a heavy burden on their parents and families (Fairfax et al. 2019). Such a challenge is recognized universally, transcending cultural and social boundaries. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) underscores the importance of full and effective social participation and inclusion for persons with disabilities as fundamental rights (Hendriks 2007). Social inclusion, stemming from the principle of normalization (Kumar 2020), is defined as “the process of improving the terms on which individuals and groups take part in society—improving the ability, opportunity, and dignity of those disadvantaged based on their identity” (World Bank 2013). When children with disabilities and their families have access to proper services for social inclusion, the psychological burden and stress decrease, and their family competencies and QoL improve (Iacob et al. 2020; Seo, Yoon, and Kim 2016). The UNCRPD clearly stated the importance of the government's responsibility for social inclusion, and many countries have ratified it and adhered to it while developing their policies (United Nations 2024; Office of the United Nations High Commissioner for Human Rights, 2014).

Particularly, families of children with disabilities in Asian countries, including Korea, which share a collectivist culture, are more influenced by a sense of social inclusion and belonging compared to those in Western cultural contexts (Fong, Gardiner, and Iarocci 2021; Smith et al. 2021). Therefore, they aim to integrate individuals with disabilities into communities for the benefit of their families and the community by reducing discrimination against them (Kayama and Haight 2022). Due to the historical reluctance to stigmatize disabilities and exclude people with disabilities, the government of South Korea has developed policies from the perspective of social support and solidarity in caregiving, ensuring that children with disabilities and their families are respected and afforded social inclusion (Kim et al. 2017; Ryu 2009). In addition, there have been recent developments concerning the social services for children with disabilities and their families. These developments have included implementing various institutional and legislative initiatives designed to protect their rights and QoL, as well as expanding social services and resources (Kim et al. 2015).

Despite the international and domestic efforts to share understanding and establish effective policies and programs for promoting social participation and inclusion, children with disabilities and their families continue to feel excluded, have limited interactions with the outside world, and encounter several structural hurdles (Woodgate et al. 2020.). According to data from 88 countries worldwide, Scior et al. (2020) found that advocating and caring for a person with disabilities still rested on families. Further, children with disabilities were not afforded social inclusion as they were nurtured and schooled separately from those without disabilities. In South Korea, Choe (2016) and Kim et al. (2015) stated that the restricted selection criteria of beneficiaries, insufficient service content, and lack of integrated policies and delivery systems limit opportunities for social inclusion for children with disabilities and their families.

In this study, we aimed to assess the scope and characteristics of social services for children with disabilities and their families using a service classification system, and to identify major challenges. The analysis of these services offers a comprehensive framework, enabling a detailed understanding of the range and specific characteristics of the available services. This approach is instrumental in highlighting any discrepancies between the services offered and the actual needs of children with disabilities and their families. Furthermore, our findings will shed light on the availability and accessibility of these services, as well as the degree to which they meet the demands of their intended beneficiaries. The outcomes of this study are expected to be crucial in pinpointing gaps in service delivery. This, in turn, will help the development of informed policy decisions and provide a solid foundation for guiding future research initiatives, ensuring that the services are truly inclusive and effective.

2 Methods

3 Results

4 Discussion

This study was conducted to analyze the range and nature of social services for children with disabilities and their families, to propose strategies to improve the availability and accessibility of these services, and to better meet the needs of their intended beneficiaries. The findings of this study identified key aspects of the existing social services and highlighted major issues and challenges such as imbalanced geographical distribution of services, concentration of specific service contents, and narrow eligibility criteria for beneficiaries.

We identified the number and distribution of social services for children with disabilities and families in three major regions, including Seoul Metropolitan City, Incheon Metropolitan City, and Gyeonggi Province. This study found that the proportion of social services for children with disabilities and their families provided by local governments was significantly higher compared to those managed by the central government. Although services for people with disabilities and their families in Korea are planned according to the laws and policies of the central government, the actual operation and administration are mostly carried out by local governments and their affiliated institutions. Considering that overall services in the study included community-driven bottom-up social services as well, the proportion of services provided by local governments becomes even higher. Recent studies have shown that welfare disparities between regions tend to intensify depending on the capacities of local governments and communities. These capacities include not only financial resources but also administrative and political aspects such as personnel and expertise (Shin and Moon 2017). An examination of the 2023 social welfare budget composition of local governments in Korea revealed no significant differences in the welfare budget per person with disabilities between urban and rural areas (Chung 2023). However, the actual institutions and personnel capable of providing welfare services tend to be concentrated in large cities (Hwang 2024). This concentration can lead to an imbalance in the supply and demand of social services. In the provision of social services, while decentralization to local governments is emphasized, a balanced strategy is required. This strategy should focus not on the dichotomy between centralization and decentralization but on enhancing the autonomy of utilizing national and local budgets, expanding dedicated experts/personnel and organizations, and discovering services (Shin and Moon 2017). More than half of the services found in this study were provided in Seoul. Gyeonggi province provided less than one-third of the services, although it had the largest number (n = 20,825) and prevalence rate (1.00%) of children diagnosed with disabilities, exceeding the national average (Kim, Choi, Kim et al. 2022). As in previous studies, there exists a regional gap between supply and demand such as budget, providers, and personnel which were more concentrated in large cities or metropolitan areas than in rural areas (Ham 2019). This phenomenon is no exception for services for children with disabilities and their families (J. H. Kim et al. 2015). Although the official registration location for many children with disabilities is in rural and regional areas, they often temporarily relocate to urban areas with higher levels of goods and services for several months. This phenomenon leads to these children and their families becoming so-called “rehabilitation refugees.” Paradoxically, this results in a vicious cycle where, regardless of the increasing prevalence rates in rural areas, the demand for services remains concentrated in large cities or metropolitan areas, thereby reinforcing the provision of services in those cities (Choi, Lee, and An 2021). Such services deepen the crisis of health inequality and widen the gap in information accessibility within the community. The result of the present study showed that systematically shared and easily accessible information on services for children and families is limited though the central and local governments have tried to overcome the trend of concentrated services in the metropolitan area (Choi, Lee, and An 2021). The biggest demand for communities is not to provide new services or programs but to improve coordination and cooperation among the services currently available (S. Kim et al. 2015; Vogelsberg, Williams, and Friedl 1980) and this reflects the need to establish a community network or integration system that coordinates all organizations responsible for services. Therefore, to increase the uptake for vulnerable groups with poor access to and use of services for physical or socioeconomic reasons, improvement measures for the availability of existing services will have to be a priority.

When analyzing the contents of services for children with disabilities and their families, the majority of service contents were “Health care” related services including assistive devices, healthcare costs support, and treatment. These were followed by services supporting children and family life, such as financial support or activity assistance. According to the 2020 National Survey of Persons with Disabilities, the highest priority request for government and society regarding the welfare of children with disabilities under the age of 17 was medical security, followed by income security, childcare or education security, and employment security (Ministry of Health and Welfare & Korea Institute for Health and Social Affairs 2021). The findings of this study show a good alignment with these expressed needs. That is, in South Korea, services seem to be well-prepared in areas with high demand for children with disabilities and their families. However, according to the national survey, the utilization rate of most services among children with disabilities and their families was found to be less than 30%, excluding public utility discounts. Services for care support, such as activity support and parenting support, were shown to be less than 10% (Ministry of Health and Welfare & Korea Institute for Health and Social Affairs 2021). The authors of the survey report interpreted these circumstances to mean that despite the introduction and significant expansion of support programs for people with disabilities since the 2010s, the actual perceived support felt by people with disabilities and their families is not high, indicating large blind spots in support and low policy effectiveness. They suggested that the fragmentation of disability support and lack of accessibility may have exacerbated this issue (Ministry of Health and Welfare & Korea Institute for Health and Social Affairs 2021).

Through the analysis of the characteristics of beneficiaries in our study, we can delve deeper into these interpretations. Through the analysis of characteristics of target beneficiaries by service content, the lack of both universality and selectivity of service provision was further explored. In other countries with advanced welfare states, the expansion of social integration and social inclusion is achieved with a twin-track approach of selectivity and universality (Kim 2013; Wertlieb 2019). This strategy not only promotes accessibility and inclusion throughout public systems but also provides services tailored to disability-specific needs. In this study, when services for children with disabilities and their families were classified according to characteristics of target beneficiaries, type and level of disabilities included in the child health status category, and benefit and income level included in socioeconomic status were the most frequently considered eligibility criteria, except for the general characteristics of children and families. This pattern was observed across three domains of service content (community, healthcare, and child and family lives). This suggests that services in South Korea are often provided based on restrictive criteria, focusing more on socioeconomic status or type of disability rather than on identifying who truly needs the service. While generalization of policy coverage is an important strategy for universal allocation, this study and previous studies highlight that the service provision of South Korea has not reached a comprehensive range of services and is still limited to focusing on vulnerable people depending on their income or disability status (Kim 2011; Yoo et al. 2015).

Selectivity means providing the necessary services to those in need of the very services (Carey and Crammond 2017); that is, it is necessary to deliberate on whether the criteria for identifying people in service needs are appropriate. Indeed, only a small number of services in the categories of nursing services and activity assistance evaluated the level of physical function of children with disabilities (level of functioning) and used the result as an inclusion criterion of services. It is also rare to consider the service recipient's situation, such as family composition, living quarters, living conditions, or life events. Along with considering whether the determinants are appropriate for the service, their consistency should also be reconsidered. We found that there are five different items that the actual service adopted as criteria of income level, and the property level also contained another five items. Those in need of the service experience restrictions from the benefits, as well as inconvenience because of the differences in criteria used. The government has made efforts to communicate the inclusion criteria of social services (S. Kim et al. 2015), but it is not yet a reality.

Recent literature underscores the significance of integrating social determinants of health (SODH) into healthcare delivery systems. Given the substantial societal investment in healthcare and the considerable number of individuals who could potentially benefit from social services, it becomes imperative for society to determine the allocation of these benefits. To this end, it is essential to identify the most appropriate approach from those previously described for recognizing current beneficiaries of social services (Bickenbach, Sabariego, and Stucki 2021). Furthermore, the importance of coordination in optimizing limited resources and addressing SODH, especially for children with disabilities and their families, at the community level cannot be overstated (Pankewicz et al. 2020). Therefore, the criteria for beneficiary characteristics cannot be determined solely based on provider convenience and general vulnerability standards; they must be decided by considering the actual SODHs that have an impact.

In terms of focusing on providing services for individuals in need, the International Classification of Functioning, Disability, and Health (ICF) by the World Health Organization (2001) can be referenced. The ICF framework is a biopsychosocial model that aims to comprehensively understand and assess various aspects related to an individual's health. The ICF emphasizes “functioning” rather than merely diagnosing diseases or disabilities. This encompasses not only physical functions and structures but also activities, participation, environmental factors, and personal factors. The concept of functioning is essential as it directly connects social services to what is significant for individuals regarding their health, such as the activities they can engage in, the roles they can assume within society, and the objectives and ambitions they can pursue (Bickenbach, Sabariego, and Stucki 2021).

For appropriateness and consistency of the service coverage and provision, an integrated welfare delivery system from the diagnosis of disabilities and evaluation of the need for support to a timely link to suitable services is consistently required. In Australia, disability reform has been carried out centered on the National Disability Insurance Scheme (NDIS) that provides services for people with disabilities based on the principle of reasonable and necessary support through a unified statutory organization since 2013 (Cowden and McCullagh 2020; Olney and Dickinson 2019). Each person with a disability is assigned a support coordinator, who links a series of steps to providing information, disability registration, service planning, provision, and evaluation. In this process, a person with a disability could not only set goals and plan for individualized needs but also be given a beneficiary-controlled budget for care, providing free choice to individuals and families (Cowden and McCullagh 2020; Olney and Dickinson 2019). Beneficiaries report improvement in QoL through the new scheme, which excludes the inequality driving factors (e.g., age, gender, socioeconomic status, residential area) and strengthens individual needs and choices (Warr et al. 2017). Additionally, caregivers of children with disabilities participating in the NIDS program showed significant improvement in well-being and QoL (Snow and Donnelly 2017).

In South Korea, the government continues to make efforts to prepare an effective and efficient system for providing services for people with disabilities. However, the results of our study suggest that services for children with disabilities and their families in South Korea are limited and face several challenges, including restricted beneficiary criteria for using the services, weighted service content, and a lack of effective information dissemination and accessibility for services. These challenges contribute to the exclusion and burden experienced by children with disabilities and their families, as well as a lower QoL. Based on these results, it is evident that more needs to be done to promote social inclusion and support the rights of children with disabilities and their families. To achieve this goal, we recommend several actions, including expanding and improving existing services for social inclusion, developing more integrated and comprehensive policies and delivery systems, and increasing awareness and understanding of the needs of children with disabilities and their families among policymakers and the general public.

In this study, information on social services for children with disabilities and their families in South Korea was collected and evaluated using a predetermined framework. However, there were limitations in incorporating all the services that the institutions had not disclosed. Additionally, we relied on data from a single country. It is important to note that beneficiary requirements and service content may vary across countries, regions, and institutions. Therefore, we propose a methodology to review and classify existing services in other countries. Future studies could aim to investigate the global status and challenges of services for children with disabilities and their families, identifying improvement strategies by comparing these services across different areas and countries.

5 Conclusion

This study identified and analyzed the range and characteristics of social services for children with disabilities and their families provided by public and private institutions across the three major regions in South Korea. Using a systematic classification approach, we revealed significant disparities in service inclusion criteria, which often fail to accommodate the diverse needs of the beneficiaries. These criteria not only vary widely but also tend to be restrictive, focusing primarily on socioeconomic status or specific types of disabilities, thereby limiting the overall reach and effectiveness of the services. Our findings underscore a critical gap in the current service delivery system, where the exclusion of nuanced beneficiary situations results in the underutilization of available resources. To bridge this gap, it is imperative to adopt more inclusive, needs-based criteria that reflect the actual circumstances and requirements of children with disabilities and their families. By advocating for an integrated and inclusive delivery system, we call for immediate policy reforms and strategic implementations to ensure that social services are tailored to meet genuine needs. Such an approach promises to enhance the QoL and social inclusion for children with disabilities, fostering a more equitable and supportive environment.

Ethics Statement

This study was approved by the Kyung Hee University Institutional Review Board (No. HSIRB-18-056(RA)).

Conflicts of Interest

The authors declare no conflicts of interest.