In general, compared to normal families, those in charge of bringing up the disabled have been influenced more negatively in their overall social life, since their physical, socio-psychological and economical life is more burdensome and they are suffering more of family conflict and stress.
The present policy for the disabled in Korea is not comprehensive but fragmented, not beneficiary-centered but provider-centered, and not family-oriented but disabled indivisual-oriented.
So, in order to include family members of the disabled into service beneficiaries, this research has surveyed management state of the domestic and foreign policy for the family of the disabled. And, by finding out practical and necessary services for the family through the survey on actual state of family supporting and its needs, this research intends to suggest policies that can contribute to improving quality of the disabled family life.
This research has conducted a sample survey on 300 disabled children's parents collected from those that belong to disabled children's parent association in Seoul, Incheon and Daegu and those that use the social welfare facilities.
Results from the survey can be summarized as follows ;
In response to whether they use care and education facilities for disabled children, 85.9 percent said "yes" and 14.1 percent "no". About economical difficulty from growing up disabed children, 49.4 percent replied "burdensome" and 27.8 percent replied "very burdensome", implying that economical burden from disabled children is heavy. About indivisual difficulty from growing up disabled children, 254(31.1 percent) replied "having a difficulty in economical activities", 208(26.4 percent) replied "having insufficient leisure avtivities", 201(25.5 percent) replied "having an increasing burden in supporting disabled children". About social life difficulty from growing up disabled children, 213(27 percent) replied that they have a difficulty in getting and maintaining their jobs.
In reference to services they want in order to care disabled children, the largest respondent groupof 334(42.3 percent) want one-stop service, 311(39.4 percent) want consultation and care service for disabled children, and 59(7.5 percent) want programs for normal siblings. As for caring time, main carers spend 12.2 weekday hours and 18.2 weekend hours in taking care of disabled children. Vice carers spend 3.9 weekday hours and 7.9 weekend hours.
In reference to necessity of family support service, needs for community service turns out to be first(M3.59), information needs turns out to be second(M3.44), and needs for care, treatment and education turns out to be third(M3.37). On necessary conditions for family support service, policy strategy of the disabled family law gets average 3.51 points out of 4, and service strategy of the law gets average 3.19 points. Concerning policy strategy of the law, one-stop service system through establishment of the disabled family support center turns out to be first(M3.55), and welfare organization linkage service turns out to be second(M3.52). Concerning service strategy of the law, family care service like temporary care aid turns out to be first(M3.46), culturaland leisure activities program for the family turns out to be second(M3.41), and short-term care service like 24 hour commissioned home care or on-vacation commissioned care turns out to be third(M3.33)
On the basis of above survey results, this research suggest policy alternatives to support family of the disabled as follows ;
First, families of the disabled need economical support such as more relevant and practical living subsidy and disabled dependency allowances as well as multiple reduction of tax or cost-of-living. This research shows that the poorer families with disabled children are, the more badly they need economical support.
Second, enactment of the disabled family law is required. Concerning the most necessary conditions that the law should meet to support the family of the disabled, one-stop service systemthrough establishment of the disabled family support center turns out to be first ,and welfare organization linkage service turns out to be second. That is to say, legal system is needed to resolve the lack of relevant law or institution for the family of the disabled.
Third, for the sake of one-stop service, government should establish the disabled family support center that can provide comprehensive service including current services. In order to provide comprehensive and specialized service to the family, local government must build comprehensive service systemthat should be supervised by central government.
Fourth, respite care service should be reinforced. Now that families of the disabled have insufficient receation because of heavy burden in spite of their high desire, much more respite care facilities should be established and the family's right to use them should be enlarged so that they can reduce excessive everyday burden of growing up the disabled.
Fifth, indivisualized care service should be implemented according to a disabled child. That is because, as survey results show, there is much difference in demanded services between disability types and the family with a child of multiple disabilities realizes relatively keenly the necessity of services.