共創理想鄉：智能與發展障礙家庭在雙老家園中的生命經驗及未來願景

Abstract

隨著臺灣醫療技術的進步，社會逐漸邁入高齡化，身心障礙者的平均年齡也隨之提升。其中又以智能與發展障礙的族群對原生家庭的支持依賴最大，因為認知能力受限、生活自理能力不足，若伴隨著具挑戰性的行為問題，更導致社會適應困難、難以找到合適的安置場所。臺灣社會受家庭照顧主義風氣的影響，多將障礙者視為家庭的責任，當家庭照顧者與障礙者同時老化時，便出現了「雙老家庭」的照顧需求。因此，有一群面臨同樣處境的家長們決定打造心中的理想—「雙老家園」，成為一種由障礙家庭自給自足、不同以往的獨特照顧模式。本研究場域的雙老家園是複合式的建築場域，其中包含親子住宅、社福大樓，以及農場、茶園、公園等周邊活動場域。本研究以家庭為單位，進行觀察與半結構訪談，了解在家園的家庭生命經驗與未來願景。根據Turnbull和Turnbull（1991）針對身心障礙家庭提出的家庭系統理論（Family Systems Theory）作為研究基礎，有以下發現：（一）家園中的障礙者大多特質相近，不同障礙類別的個性能互補相互協助。（二）家園中的照顧者多具有充足的人脈、資源與背景經歷，將照顧責任化為投入莊園經營的使命感。（三）家園具有獨特的經營模式，且成員間彼此同理接納成為後天的家人，使家園成為如眷村般的大家庭關係。（四）參與者與家庭成員大多對雙老家園的未來生活模式有正面的期待，並將家園視為彼此最終的家。透過研究結果有以下未來建議：（一）建議障礙家庭成員及早規劃未來生活，深度對談了解彼此想法。（二）建議實務工作者在提供服務時留意家庭成員相互影響的重要性，並以家庭整體為中心考量。（三）建議政府組織應深度了解家長心聲進行社福制度的修正與改善；亦可透過實際的支持與雙老家園保持合作關係。（四）建議未來研究者等家園運行穩定後，再深入探索生活樣貌或不同家庭成員角色的想法與觀點。Taiwan's medical technology innovation is making significant strides to meet the needs of its aging population and the increasing number of people with disabilities. Among this population, individuals with Intellectual and Developmental Disabilities (IDD) are the most reliant on support from their original families due to their limited cognitive abilities and insufficient self-care skills. When challenging behaviors accompany these limitations, it becomes even more difficult for them to adapt socially and find adequate residential placement. Influenced by the tradition of familial caregiving in Taiwanese society, people often view caring for individuals with disabilities as family responsibility. When both the caregiver and the individual with disabilities age simultaneously, a caregiving need known as"double-aging families" arises. Therefore, families needing such long-term care established a new residential option: "Village Communities". The Village Community in this study is a complex that includes residential units for both parents and children, a social welfare building, and surrounding activity areas such as farms, tea gardens, and parks. In this study, I took families as units for observation and semi-structured interviews to understand the life experiences and future visions of families choosing to move into the community. Based on the Family Systems Theory proposed by Turnbull and Turnbull (1991) for families with disabilities, findings from my analyses revealed: (1) Most of the individuals IDD in the community have similar characteristics, and the different personalities of various types of disabilities can complement and assist each other. (2) The caregivers in the community generally have extensive networks, resources, and background experiences, transforming caregiving responsibilities into a sense of mission for managing the estate. (3) The community has a unique management mode, where members connect with and accept each other, becoming an extended family like a military dependents’ village.Based on the research results, the following future recommendations are made: (1) Family members of individuals with disabilities should plan their future lives early and engage in in-depth discussions to understand each other's thoughts. (2) Practitioners should pay attention to the significant impact of mutual influence among family members when providing services, considering the family unit as a whole. (3) Government organizations should listen to parents' voices to amend regulations and improve social welfare systems; they may also cooperate with Village Communities to provide practical supports. (4) Future researchers are advised to follow-up with this Village Community to explore different family members' living patterns and perspectives.