助残服务的充足性与家庭生活质量——基于对上海地区残障儿童的家庭照料者研究

Adequacy of Services for the Disabled Persons and Family Quality of Life——Family Caregivers of the Disabled Children in Shanghai

家庭是残障儿童最重要的支持来源。西方福利国家不仅发展了基于家庭视角的助残政策与服务,而且形成了对应的检视指标——家庭生活质量。反观国内,目前对助残服务成效的评估明显不足,对残障儿童家庭生活质量的关注和测量尚付阙如。基于美国Beach Center on Disability的汉化"家庭生活质量"量表,本研究对上海地区特教学校中的残障儿童家庭生活质量进行了测量,发现该量表具有较好的信度。并发现,上海残障儿童家庭所需服务供给不足,大多处于"没有服务"的状态。整体上,以残障儿童为中心的个体取向服务明显要比以家庭为中心的服务充足;残障儿童处于7—12岁的家庭、重度残障儿童家庭、低收入家庭等要比其他家庭有着更大的服务诉求。残障儿童家庭照料者的家庭生活质量满意度处于中等水平,残障儿童户籍、残障程度、残障类型以及服务充足性等,都对家庭生活质量有显著影响。最后,本文提出了完善上海助残家庭政策与服务的建议。

Family provides the most important support for the disabled children. Western welfare countries have developed supportive policies and services for the disabled from the family perspective, along with the relevant indicators： family quality of life. Comparatively, China neither has suffi cient evaluation on services for the disabled, nor pays enough attention on family quality of life（FQOL） of families with disabled children. This study examined the FQOL of Shanghai families of disabled children in special education schools, based on the Chinese version of theFQOL-Scale by U.S. Beach Center on Disability. It indicates that the overall scale has good reliability. Services for families of disabled children are not enough, or even ＂nothing＂. Overall, there are more services of individual than that of family perspective. Those families with disabled children aged 7 to 12, or children with severe disabilities, or families in a poor fi nancial condition, would have more demanding appeals. FQOL of Shanghai families with disabled children is at a medium level. Controlling the Hukou of disabled children, the degree and category of children＇s disability, family annual income, etal., the perceived adequacy of services is tested as a signifi cant factor in predicting family quality of life. Policies and interventions are discussed to improve the wellbeing of disabled children and their families.