「從民間走進建制，然而我們不一樣」家庭照顧者的困境：以服務組織為探究起點

Abstract

人的一生歷經生、老、病、死，不時呈現脆弱狀態而必須依賴著他人提供協助，社會往往期待家庭提供照顧。 這篇論文關切家庭照顧者在目前長照政策之下的處境，所謂的「家庭照顧者」是「對身心失能者提供規律性照顧的家人」，長照2.0正式將「家庭照顧者支持服務」列為服務項目之一，然而我在新北市家庭照顧者關懷協會（新北家協）工作期間，卻聽聞與感受到「斷裂」，像是難以與照顧管理專員（A個管）對焦個案為何，以及家庭照顧者與民眾無法理解家庭照顧者支持服務組織與長照服務體系之間的關係。我開始思考「長照服務體系究竟如何看待家庭照顧者與家庭照顧者支持服務？」 以及「家庭照顧者支持服務真的算是長照服務了嗎？」 我採用「建制民族誌」作為探究方法與批判性思考，以新北家協的工作經驗為基礎，探討家庭照顧者支持服務與其他長照服務單位的關係，長照服務體系以何種方式編派家庭照顧者與家庭照顧者支持服務據點進入福利體制之中，進一步映照家庭照顧者被社會所排除的處境。 我看到家庭照顧者支持服務據點的社工，除了背負個案管理服務之外，還要肩負服務的提供、網絡人員教育訓練、志工服務指引等；新北家協面對著服務項目改變、轉介流程的調整、家庭照顧者服務資格的限定等，我看見家庭照顧者支持服務逐漸成為長照服務體系的B單位，甚至正協助提升長照服務涵蓋率。 服務組織逐漸走入長照服務體系之中，逐漸失去自主性，也使得支持性服務的內涵不再以家庭照顧者的需求為重，反而透露整個社會福利體制仍然處在家庭主義的意識形態，使得家庭照顧者仍然邊緣化。 我誠摯建議長照服務，應該是「針對整個照顧家庭提供協助，包含身心失能者的健康、個人與社會性服務，與家庭照顧者的支持服務，目標是維持照顧家庭的福址與生活品質」，走向「以家庭為中心，以社區為基礎」的公共服務。

People go through birth, aging, sickness, and death in life. They are vulnerable from time to time and must rely on others’ assistance. We often expect families to provide care. I wrote this thesis concerning the situation of family caregivers who provide regular care for a family member with physical or mental incapacity (the disability) under the current long-term care policy. Long-term care 2.0 (LTC 2.0) officially lists 'family caregiver supportive services (FCSS)' as one of the service items. However, when I worked in the New Taipei City Family Caregiver Association (NTCFAC), I had experiences of “disjuncture”. One of the experiences was the difficulty identifying the case (client) with the care managers from the LTC, and the other was that family caregivers and the public hardly understand the relationship between FCSS organizations and the LTC service system. I started to think about 'How do practitioners of the LTC service system view family caregivers and FCSS?' and 'Is FCSS indeed one of LTC services?' I adopted Institutional Ethnography as an inquiry method and critical thinking. Based on the work experiences in NTCFCA, I explored the social relationship between FCSS and LTC service and the social organization in which Family caregivers and FCSS are organized in the welfare regime via the LTC service system. The findings further reflect the social exclusion of family caregivers. I have found out about the diversity of social workers in FCSS. In addition to case management services, they undertake individual service provision, advocacy, and training of service network, volunteer service coordination, etc. With the alteration of the items of FCSS, adjustment of the process of case referral, and the qualification of FCSS, I have realized that the FCSS has gradually become one of the service providers in the LTC service system and is even helping to increase the coverage of LTC services. FCSS organizations are gradually being part of the LTC service system and losing their autonomy, which also made FCSS no longer based on the needs of family caregivers. It reveals that the whole social welfare regime is still full of the ideology, the familism, which makes family caregivers remain marginalized. I sincerely recommend that LTC should be redefined as 'the provision of assistance for the entire family, including health, personal and social services for the family member with physical or mental incapacity (the disability), and FCSS for family caregivers, with the goal of maintaining the well-being and quality of life of the family,” and move towards a public service which is “family-centered and community-based”.