KWDI Korean Women’s Development Institute

Although people with disabilities have a great need for care support in daily life, most children with disabilities, especially those with developmental disabilities, appear to be taken care of by their parents. However, there hardly exists any policy support for families with disabled children. In relation to this, the study aims to examine future improvements and tasks related to support services for children with developmental disabilities according to their age, in consideration of the difficulties and burdens of parents who are supposed to continue to take care of their children throughout their lives.

The content of the study is focused on previous studies on the care of children with developmental disabilities in Korea and overseas, definition of the concept of care, current status of people with developmental disabilities, current status of parents who have children with developmental disabilities (hours of care according to children’s age, hours of public care service use, care support system, factors that increase the burden of care, etc.), limitations of support services, and possible improvements.

The research methods used for the study were literature review, analysis of secondary data (2011 National Survey of the Disabled Persons), questionnaire survey (for parents of children with developmental disabilities), group interviews and in-depth interviews as well as consultation with experts and hands-on workers, etc.

The results of the study are as follows: First, the hours of direct care by main caregivers decrease as children grow older and changes in care activities also occur. Overall, care hours drop as children get older, but in the case of children 30 years of age or older, care hours of main caregivers appear to increase slightly. Second, the hours of public care service use reach their peak during the school ages of 13 to 18. This can be seen to result from the regular school education that children of these ages receive. Third, in the case of adult children, the hours of main caregiver care and public care service use decrease while the hours of independent activities by the children increase. This is seen to be because disabled children who have become adults can perform certain activities alone. On the other hand, it can also be seen to signify the fact that adults with developmental disabilities are limited from using public care services and thus parents have no choice but to leave their adult children alone. Fourth, emotional burden of main caregivers did not appear to have a significant relationship with the total amount of care hours. Care hours of main caregivers were found to have a positive correlation with physical and social burdens. However, the difference in care hours did not seem to be significant for emotional burden. Fifth, the hours of public care service use were confirmed to contribute to alleviating the care burden of parents with children in their childhood. Nevertheless, it did not have significant influence on those with children in their adolescence or adulthood. Sixth, among family support factors, conflict between spouses was found to enhance the care burden of parents with children in their childhood or adolescence. Seventh, the service that parents mainly need is developmental rehabilitation service, and in the case of parents with adult children, they appeared to have a high need for job-related and day care services. Eighth, parents of children with developmental disabilities appear to have a low degree of preparation and thus have difficulties in relation to permanency planning.

Based on these results, the following improvements are suggested in the support services for parental care. First, it is necessary to broaden the concept of the care for children with developmental disabilities. The concept should be extended to cover emotional aspects in addition to direct physical care. Second, it is necessary to improve the inequity in the support for child care according to their age by increasing support for the care of adult children. Adult children with developmental disabilities have nowhere to go during the daytime with the exception of those who have jobs. The reasons for this problem with adults with developmental disabilities are lack of consideration of the fact that adults also need care, importance of support for their independence, and lack of care facilities for them. Third, it is necessary to establish and facilitate support networks on the local community level. At present, support for children with developmental disabilities and their parents are provided on the national level. However, it is not sufficient for the satisfaction of various independent needs. In this regard, it is necessary to seek measures on the development and vitalization of support networks led by the local community. Fourth, facilitation and support for care through parent solidarity groups are required. If care support by parent solidarity groups generate cases of sustainable care support maintained through the participation by parents of children with developmental disabilities, and if these cases are promoted and required public support are also offered, this is likely to expand care support with relatively small additional financial burden.

Concerning the care support services, the following suggestions are made. First, it is necessary to establish a place for activities by and exchange among adult children within the local community. Expansion of various spaces for adult children is expected to enable children with developmental disabilities to design their own future and make independent decisions. Second, it is necessary to develop a variety of different housing models on the local community level. Housing support can include support for independent living and also indirectly help alleviate the care burden of parents through separation of living space. For this, support from the local community is required. Third, preparation and support for permanency planning of children with developmental disabilities are necessary. Permanency planning is highly important for the independence of people with developmental disabilities. In this regard, it is necessary to set up and foster professional teams for permanency planning, and provide counseling programs for families with children with developmental disabilities and systematic education on permanency planning in the support for parental education. In addition, it is necessary to build the social infrastructure for the development of permanency planning and reinforcement of legal and institutional measures. Fourth, it is necessary to improve support services based on people’s needs according to children’s age and service use experience. Concerning the services that are not easily accessible and have low usage, it is necessary to figure out the reasons and make appropriate adjustments. Fifth, information accessibility related to the care for children with developmental disabilities should be increased. It is necessary to build a service support system that provides suitable services according to children’s age. Sixth, family support for the prevention of conflict between spouses should be provided for families that have children with developmental disabilities. As mentioned before, the study results show that conflict between spouses affects the care burden of parents with children in their adolescence, and family support to prevent this conflict is required.