一個有生命力的家：成年心智障礙者「互助家庭」模式發展之探討

A Living Home: Development of Interdependent Home Model for Adult People With Intellectual Disabilities

根據系統觀點檢視目前台灣機構服務提供成年智障者之社區居住型態，發現其仍缺乏完整家庭結構與存在次系統間界限不明之問題，相關調查也顯示，目前約九成之障礙者家長在面臨長期照顧壓力與雙重老化問題時，仍選擇將孩子留置家中照顧而造成「家庭生命週期」中之階段發展危機。此現況引起參與本研究家長之關切，並產生該團體為其即將成年之障礙子女籌組「互助家庭」之想法。本研究針對四名障礙者家長、兩名一般手足與兩名特教教師進行個別深度訪談與多次焦點團體訪談，蒐集其對於「互助家庭」想法的澄清與未來規劃的瞭解，並加以分析。研究結果顯示：（1）照顧者對障礙子女及其手足之未來充滿憂心與不安；（2）照顧者對現存其他照顧與服務機制並不滿意；（3）照顧者長期面臨許多心理困境與阻礙；（4）互助家庭的未來發展充滿挑戰；（5）著手進行暑期體驗營的規劃。最後本研究建議智障者相關學校教育、家長、互助家庭推動者與其他服務單位應妥善規劃與落實提升其生活品質之理念，除讓「互助家庭」成為成年智障者居住機制的一項選擇外，也期盼營造一友善的環境，讓有特殊需求者及其家人都能夠更快樂、更有尊嚴的生活。

Lacking of complete family structures and clear boundaries between sub-system are significant challenges of community living services and institutions for adults with intellectual disabilities in Taiwan. Past researchs identified that almost 90% of parents in Taiwan chose to keep those adult 'children' in their original families and caused a crisis of family life cycle development when facing the long-term care stress and two-generation aging trend. Participants in this study raised the idea of developing 'interdependent home' model for their children with intellectual disabilities. The purpose of the study is to understand the potential and future possibility of 'interdependent home' model. Four parents, two siblings without disabilities, and two special education teachers were completed individual in-depth interview and focus group to collect qualitative information. The findings showed that: (1) caregivers deeply worried the future of their children with intellectual disabilities and their siblings; (2) caregivers were not satisfied with current other care or services; (3) caregivers suffered long-term stress and constraints from caring process; (4) 'interdependent home' model would be very challenged; (5) they were ready for having experimental summer camp. The findings suggest that school educators, parents, interdependent home promoters and other related service providers shall prepare and provide 'interdependent home' model as an option to create a happier and more friendly environment for people with special needs and their families.