장애인 자녀를 돌보는 부모를 위한 돌봄 지원방안 연구

A study on child care support measures for parents of children with disabilities

1. 연구의 배경 및 목적 과거 가족이 전적으로 책임져온 자녀, 노인, 병자 및 장애인 돌봄에 대한 공백이 발생하면서 돌봄의 사회화 요구가 증대되어 왔으며, 자녀 및 노인 돌봄, 장애인 돌봄에 대해 공적 지원이 제도화되어 왔다. 그러나 충분하지 못한 공적 지원 등에 따라 사각지대가 발생하고 있으며 여전히 가족이 일차적인 돌봄 책임을 지고 있는 것이 현실이다. 장애인은 일상생활에서 돌봄 지원 욕구가 큰 집단이다. 이와 같은 상황 속에서 장애인, 특히 발달장애인의 경우 거의 대부분 부모가 돌보고 있는 것으로 나타났다. 그러나 그동안 장애인 정책에서 부모를 포함하여 가족을 위한 돌봄 및 다양한 지원의 필요성에 대한 관심은 상대적으로 미흡하였다. 발달장애자녀에 대한 돌봄은 부모의 전 생애에 걸쳐 일어나는 과제이다. 특히 발달장애자녀가 성인이 되면 발달장애자녀의 부모는 노년기에 접어들게 되는데, 이 시기는 부모 본인의 사망 후 자녀 돌봄에 대한 불안감이 극대화되는 시기이기도 하다. 결과적으로 장애자녀의 수명이 길어짐에 따라 노후에도 장애자녀를 부양해야 하며 사후에도 자녀가 살아갈 수 있는 준비를 해야 하는 이중부담을 안고 있다. 또 탈시설화의 움직임으로 인하여 장애자녀에 대한 부양책임이 부모에게로 집중되고 있는 현실에서 전 생애에 걸쳐서 돌봄이 필요한 발달장애자녀와 그 부모에 대한 돌봄 지원은 매우 중요하며, 성인기 발달장애인에 대한 돌봄 지원은 최근 정책 대상으로 주목되고 있다. 현행 장애인 돌봄 지원 제도는 장애인활동지원, 장애아가족양육지원 등이 있으며, 매년 대상자의 확대 및 서비스 개선 등이 이루어지고 있으나, 전반적으로 불충분하다. 또한 장애인 가족지원은 상대적으로 정책적 관심의 대상이 되지 못하고 있는 것이 현실이다.

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 car