The following article is a summary of the research article “Personal assistance (PA) as an innovation in Taiwan: features, barriers and service user participation” by Chou et al which has yet to be published.
In Taiwan, personal assistance was launched in 2008 through a 3-year pilot project. The project was run by the disabled people organisation New Vitality Independent Living Association Taipei (NVILAT), the first independent living centre in the country.
Since 2012, Taiwanese law entitles disabled people to receive personal assistance from their local authority. However, its use is still far from widespread: according to 2016 data, only 0.025% of disabled people in Taiwan use this service.
In this research, the authors sought the reasons for this phenomenon. Through the interviews of disabled people and local authorities, as well as secondary data, their study explored the Taiwanese personal assistance system, comparing it with the home help system from a user and authority perspective, and trying to identify the barriers encountered by users.
Personal assistance is provided by DPOs or other organisations working with disabled or older people, through contracts with local authorities. Such associations manage the service and are in charge of recruiting and training personal assistants. Only licensed professionals, such as care workers or certified personal assistants, can be employed under this scheme.
The cost of personal assistance is based on family income: free of charge for people coming from low-income households, subsidised by 90% for individuals from near low-income households and 70% for those coming from ordinary families. Nevertheless, the hours disabled people are entitled to are frequently not enough to cover their needs, and extra hours are to be paid fully by the user.
As stated in the Amended Disability Act of 2011, in Taiwan personal assistance comes with other supportive services, as part of Independent Living Social Services (ILSS).
However, Taiwanese disability policy has remained oriented towards a preference for institutional care, with deinstitutionalisation not being included as a goal.
Consequently, the provision and functioning of ILSS are significantly limited by the insufficient and unstable funding allocated by the government. Additionally, they are not well-known among disabled people, and are not recognised by the government or by most DPOs.
Besides ILSS, since 2017 disabled people are included in Long Term Care policies, which offers home help as one of its main services. Home help provides assistance in activities including eating, bathing, dressing, moving cleaning and use of medicine, but is limited to use at home. This service offers limited intensity and flexibility, and is co-paid by families.
Another option for disabled people needing regular assistance is hiring a migrant care worker through an application and assessment from the public sector. The cost of this service is market driven, as it has to be covered entirely by families, and the qualification for hiring a foreign worker nullifies eligibility for all formal care services.
Finally, disabled people can receive care in institutions, which receive most of the government’s disability care budget.
Among participants, personal assistance was widely preferred to home help, and deemed as better responding to their needs. This was especially due to the limited availability of home help, which cannot be provided during the evening, on Sunday or on holidays, and is limited to the user’s home. Additionally, unlike personal assistants, home helpers do not work according to the user’s preference, but rather as instructed by service providers: this means that personal assistance can help with a wider range of tasks, and their support is more flexible and targeted to the person’s needs.
Users also reported an improvement in their relations with their family as a result of personal assistance, as it enabled them to live more independently, without the constant support of relatives and friends. Furthermore, they experienced an increase in their hope for the future.
However, despite these advantages, users encounter several barriers to personal assistance.
A shortage of personal assistants strongly limits their availability, resulting in users not receiving the amount of support they need. Moreover, the co-payment of the service, as well as the full payment of extra hours, make personal assistance hard to afford for many people. This results in users not being able to receive adequate support, and impacts on their chance to live independently and with dignity.
Another relevant limitation to the use of personal assistance is shown to derive from entitlement procedures, as the tools employed prioritise the “level” of disability rather than the person’s needs, and is not compatible with the idea of independent living.
Interviews with local authorities showed that the notions of independent living and personal assistance are often unknown or misused, with the differences between personal assistance and home help being unclear, confused, and sometimes in competition with each other. This concerns both local authorities and the general population, including disabled people and their families.
Finally, some of the local authorities argued that the 25-hours long professional pre-service training of personal assistants is insufficient, negatively affecting the quality of their work.
Overall, most of the obstacles to the use of personal assistance listed above are a consequence of the limited budget allocated to this service by the government: personal assistants’ wages are lower than those of home helpers, resulting in a high turnover rate and a shortage of personnel. Budget limitations are also responsible for the unavailability of personal assistance for anyone needing it and the insufficient hours users are entitled to.
In this situation, for many disabled people it becomes impossible to receive the support they need through personal assistance. They are confronted with a choice between moving into an institution and hiring a foreign worker for care, in a system that, despite recent developments, still favours professional thinking and institutionalisation instead of independent living.
