自閉症者家庭居家服務使用經驗初探

Abstract

自閉症者及其家庭與其他身心障礙者一樣，同樣列在居家服務保障的範疇，於需要時應可獲得居家式的持續性照顧。然而，我國居家服務的發展進程與老人照顧息息相關，在服務體系的規劃與人力培訓上皆缺乏對自閉症者及其家庭的獨特性進行關注並有相應的調整，加上目前少有相關研究特別針對自閉症者及其家庭的服務使用經驗進行探討。據此，研究者希望以服務使用者的角度出發，探討他們使用居家服務的實際經驗，並藉此與現行的長期照顧政策作更進一步的討論。 本研究採用質性研究方法，以深度訪談法為主，並輔以觀察法，深入了解自閉症者及其家庭既有的生活經驗與居家服務使用上的情形。本研究的主要發現為：現行長期照顧政策欠缺對自閉症者及其家庭的討論，造成在服務輸送上未能考量到自閉症者及家庭照顧者的多元需求，以及欠缺足夠的彈性服務時數，使得第一線服務員僅能透過家長的事前提醒，在服務過程慢慢磨合。其次，當服務未能回應自閉症者及其家庭的需求時，家長便可能採取「妥協」或「監督」的策略，兩種策略皆難以有效減低家庭照顧者的負荷。 根據前述，本研究建議應針對自閉症者及其家庭的服務需求進行大規模的調查，並整合相關資源，及早提供有需求的家庭適當的服務。其次，也應調整現行針對自閉症者及其家庭的評估策略，並給予一定的服務彈性，以使居家服務能夠適切地回應他們的需求。另外，在人力培訓上，應增加自閉症相關課程與實務討論，藉以提升服務員的能力，減少服務過程中的磨合與衝突。最後，研究者也建議應針對成人自閉症者組成跨專業團隊，提供復健或教育計畫的指引，幫助自閉症者維持和提升自我照顧的能力，除能降低家庭的照顧負擔，亦能使生活能有更多不同的選擇。

This study aims to explore the experiences of people with ASD and their family who are using home care service. In Taiwan, people with ASD, as those who has other disabilities, are under the protection of People with Disabilities Rights Protection Act. In this way, they can perceive home care service if they needed. However, the development of home care service in Taiwan has correlated with elderly care. Under this circumstance, the program of developing long-term care system in Taiwan was more about elderly people without considering service clients’ heterogeneity, and the government didn’t drew enough attention on the uniqueness of people with ASD and their family. Also, there was little study about utilization of home care service based on the ASD group’s experiences. Qualitative research methods were used in this study, including in-depth interview and observation. This study reports home care service may not meet the needs of people with ASD and their family, because the homecare workers who were lack of training and didn’t have flexible time to deal with the complex situations. While the long-term care system is rigid, the government didn’t take these problems seriously. Without adequate supports and resources, homecare workers needed to develop care strategies on their own or according to parents’ reminders, and those strategies may success or fail. This study found that those parents who have children with ASD may “compromise” or “supervise” the care that homecare workers provided. As a result, they weren’t actually taking a rest while homecare workers came, thus parental stress would not be declined by home care service. Implications will be further discussed in this study.