Lost in translation: implementing personal assistance in an East Asian context

Abstract

Since 2012, Taiwanese citizens with disabilities have been entitled to personal assistance from local authorities. To explore current features of personal assistance and barriers to its implementation, and distinguish it from homecare services, 33 disabled people and 12 staff members representing 10 local authorities in Taiwan were interviewed. Findings indicate that disabled people prefer personal assistance to homecare and perceive that relationships with their families have improved since the availability of personal assistance. However, many users’ needs are unmet due to insufficient hours of service and costly co-payments. Results also show that development of personal assistance has been hindered not only by limited resource allocations but also by a lack of awareness of the concepts of independent living and personal assistance among staff. In the context of East Asian culture, independent living is misinterpreted as self-reliance, leading to the resurrection of the medical model of disability.

Points of interest

• In Taiwan, personal assistance was launched by a pilot program (2008-2010) run by a disabled people’s organization.

• Since 2012, Taiwanese disabled people have been entitled to receive personal assistance from their local authority, but personal assistance has not been widely recognised by local authorities as an option to support disabled people’s independent living.

• As in Western societies, Taiwanese disabled people prefer personal assistance to homecare. Personal assistance has also promoted positive relationships within families.

• Limited resources and local authorities’ lack of understanding the meaning of independent living and personal assistance are the main barriers to the provision of adequate support.

• In the East Asian context, independent living has been misunderstood as self-reliance, suggesting no need for assistance or support, which has led to the domination of the medical model and of professionals’ and carers’ perspectives in the implementation of personal assistance.

Keywords:

• independent living
• personal assistance
• home care
• medical model
• East Asia
• Taiwan

Acknowledgements

The authors would like to thank all the participants for sharing so much with us. We also thank the New Vitality Independent Living Association of Taipei, especially Chun-Chieh Lin and Kimi Chuang, for guidance for data collection and the whole research process. Thanks also to our research assistant Chia-Ning Chang for her assistance in data collection. Special thanks to Professor Sharon Pugh for her help in editing the language of this manuscript.

Disclosure statement

No potential conflict of interest was reported by the authors.

Description of authors’ roles

Yueh-Ching Chou designed the study, collected and analyzed the data and wrote the paper; Bo-Wei Chen and Teppo Kröger assisted in discussion and revising the paper.

Conflict of Interests

None declared.