Abstract
Background: Priority given to supported decision-making has increased internationally since the United Nations General Assembly adopted the Convention on the Rights of Persons with Disabilities (CRPDs). Nations worldwide have moved to ratify and enact the CRPD. Methods: A questionnaire survey on the supported decision-making status was conducted in Japan and Taiwan (60 and 73 people, respectively; N = 133, 82 women and 51 men). Survey items were objective indicators based on the CRPD. Results: In both countries, people who are older (vs younger) or those having more (vs less) experience supporting persons with intellectual disabilities were more likely to practice supported decision-making. Relationships between persons with intellectual disabilities and family members are vital. Conclusions: It is necessary to establish appropriate supported decision-making methods, that do not depend on aspects such as support experience, for persons with intellectual disabilities in Japan and Taiwan. Additionally, it is necessary to clarify the relationship with the family in supported decision-making for persons with intellectual disabilities and to work together appropriately.
Keywords: Supported decision-making, supporter awareness, supporter practice, family relationships, persons with intellectual disabilities
Introduction
A review of the international trends regarding supported decision-making is necessary. The Convention on the Rights of Persons with Disabilities (CRPDs; United Nations 2006), adopted by the United Nations General Assembly in 2006, entered into force in 2008; as of 2021, 184 countries have ratified the CRPD. Article 12 of the CRPD stipulates that persons with disabilities have the right to be recognized as persons before the law, enjoy legal capacity, and be provided with the opportunity to access the support they need to exercise their legal capacity. The Committee on the Rights of Persons with Disabilities General Comment No. 1 states that Article 12 of the CRPD respects the rights, will, and preferences of persons with disabilities, and the system of supported decision-making prioritizes the will and preference.
Supported decision-making is likely to be developed based on the content and stipulations of the CRPD. Moreover, in British Columbia, Canada (Arstein-Kerslake et al. 2017; Shogren and Wehmeyer 2015), South Australia, New South Wales, and Victoria in Australia (Arstein-Kerslake et al. 2017; Bigby et al. 2017), and Colombia, Peru, and Argentina in South America (Vásquez Encalada et al. 2021), supported decision-making efforts have been observed. However, there is reportedly no formal scheme or unified model for supported decision-making (Bigby et al. 2019; Callus 2018; Werner and Chabany 2016), and there are few laws governing supported decision-making worldwide (Callus 2018). Additionally, there is confusion over the legal status of informal supporters and paternalistic supported decision-making (Bigby et al. 2019).
In Japan, the ratification of the CRPD was approved in 2014 and accompanied by the development of related domestic laws. Article 23 of the Basic Law for Persons with Disabilities, revised in 2011, which stipulates basic principles concerning persons with disabilities, clearly outlines the responsibilities of the national government and local governments regarding supported decision-making. Additionally, Article 42 and Article 51-22 of the Act on Comprehensive Support for Persons with Disabilities, in effect since 2013 and stipulating welfare services for persons with disabilities, require consideration of supported decision-making in overall support. After the ratification of the CRPD, Japan’s Ministry of Health, Labour and Welfare issued the Guidelines for Supported Decision-making for the Provision of Welfare Services for Persons with Disabilities in 2017 (Ministry of Health, Labour and Welfare 2017). The guidelines outline the concept of supported decision-making for persons with disabilities. However, a system for practicing supported decision-making in accordance with these guidelines has not yet been established.
In Taiwan, the Legislative Yuan passed the Law for the Implementation of the CRPD in 2014, which introduced the CRPD framework. An international review of the framework’s introduction was conducted in 2017. It was recommended that Taiwan amend all relevant laws, policies, and procedures. The review also recommended implementing measures to introduce a supported decision-making system, including providing adequate resources in accordance with the Committee on the Rights of Persons with Disabilities General Comment No. 1. However, it is not yet known how the recommendations, such as establishing a related legal system and formulating guidelines, will be implemented in Taiwan.
This study examined the status of supported decision-making in Japan and Taiwan. The two countries must introduce a supported decision-making system, owing to the ratification of the CRPD. The study utilized a questionnaire survey with items, based on objective indicators that considered the content of the CRPD. The status of supported decision-making and awareness of supported decision-making among the survey targets were clarified, considering age and support experience.
Although there was reportedly no universal definition of supported decision-making, in this study, we considered supported decision-making to consist of various supports and options that emphasize the will and preferences of the individual and respect human rights norms, in accordance with Article 29 of the General Comment No. 1 of the Committee on the Rights of Persons with Disabilities.
Materials and methods
To clarify the status of supported decision-making for persons with intellectual disabilities in Japan and Taiwan using objective indicators, an original survey was created based on the Supported Decision-making Guidelines for the Provision of Welfare Services for Persons with Disabilities (Ministry of Health, Labour and Welfare 2017) in Japan. At present, Article 12 of the CRPD and General Comment No. 1 of the Committee on the Rights of Persons with Disabilities present the general idea of supported decision-making. Thus, although it is inadequate because it does not focus on legal decisions or financial issues, the Supported Decision-making Guidelines for the Provision of Welfare Services for Persons with Disabilities, which is developed following the General Comment No. 1 of the Committee on the Rights of Persons with Disabilities, is based on the general idea of supported decision-making.
The survey items focused on the following questions:
What support is provided in the form of supported decision-making? (8 items)
What support should be provided in the form of supported decision-making? (8 items)
What are supporters aware of when they are providing supported decision-making? (19 items)
What should supporters be aware of when they are providing supported decision-making? (19 items)
What do supporters need when they are providing supported decision-making? (21 items)
What should supporters need when they are providing supported decision-making? (21 items)
Of these, questions (1), (3), and (5) inquired about the actual supported decision-making practices of supporters, while questions (2), (4), and (6) explored supporters’ awareness of supported decision-making.
Each item had possible responses based on a 5-point scale, with the most positive response receiving 5 points and a negative response receiving 1 point. The survey was conducted in February 2020 in Japan and August 2019 in Taiwan. SPSS Statistics 27 (IBM, Armonk, NY, USA) was used for data analysis.
To clarify the characteristics of the survey targets in Japan and Taiwan, we divided them into two groups based on the following factors: age (younger and older groups) and support experience (more and less groups). We used aged 40 years and 10 years of experience as the cut-off points. In Japan, there were 11 people in the aged ≤40 years group and 48 people in the aged >40 years group. Further, there were 20 people in the <10 years of experience group and 40 people in the ≥10 years of experience group. In Taiwan, there were 44 people in the aged ≤40 years group and 26 people in the aged >40 years group. Moreover, there were 55 people in the <10 years of experience group and 17 people in the ≥10 years of experience group. Thus, the results were skewed owing to differences in the distribution of age and support experience among the survey targets in both countries.
Survey respondents
In Japan, the survey was conducted on social workers and adult guardians involved in supporting persons with intellectual disabilities. In February 2020, potential participants voluntarily participated in a lecture on supported decision-making held by the Japan Network of Supported Decision-making. All 90 participants in the lecture were surveyed, and responses were obtained from 60 people (response rate: 66.7%).
In Taiwan, the survey was conducted on social workers and adult guardians involved in supporting persons with intellectual disabilities. In August 2019, potential participants voluntarily participated in a lecture on supported decision-making held by the National Taiwan University, Parents Association for Persons with Intellectual Disabilities, Taiwan, and the Japan Network of Supported Decision-making. All 140 participants in the lecture were surveyed, and responses were obtained from 73 people (response rate 52.1%).
Paragraph 17 of the General Comment No. 1 of the Committee on the Rights of Persons with Disabilities denies decision-making by proxy; thus, including adult guardians who have proxy decision-making authority as participants of this study would have been undesirable. However, as all the respondents in this study voluntarily participated in seminars on supported decision-making both in Japan and Taiwan, it was assumed that there was a high awareness of supported decision-making among adult guardians.
Ethical considerations
This study was conducted after obtaining approval from the Research Ethics Committee, Faculty of Human Sciences, University of Tsukuba. The following ethical considerations were observed in this study:
survey data that can identify the survey targets will not be disclosed
collected survey data will be stored and managed in a lockable storage unit
documents containing personal information will be shredded at the end of the research period
refusal to cooperate with the survey will create no disadvantage
refusal to answer survey questions will create no disadvantage
respondents will be considered to have agreed to cooperate with the survey by answering the questions
Results
Basic attributes
In Japan and Taiwan, respectively, more than 50% and 70% of the respondents were women. Moreover, in Japan, 80% of the respondents were aged ≥40 years, while that in Taiwan was less than 40%. In Japan, >60% of the respondents had >10 years of support experience; in contrast, this number was just above 30% for Taiwanese respondents. In both Japan and Taiwan, >60% of the respondents were social workers (Table 1). Overall, the Japanese survey targets were older and had more experience providing support than the Taiwanese survey targets. However, further examination is needed to determine if these trends are generally applicable to the field of support in both Japan and Taiwan.
Table 1.
Basic attributes of study respondents.
| Japan n = 60, Taiwan n = 73, (%) |
||
|---|---|---|
| Japan | Taiwan | |
| Gender | ||
| Men | 24 (40.0) | 16 (21.9) |
| Women | 33 (55.0) | 56 (76.7) |
| N/A | 3 (5.0) | 1 (1.4) |
| Age | ||
| Under 40 years | 11 (18.3) | 47 (64.4) |
| Over 40 years | 48 (80.0) | 26 (35.6) |
| N/A | 1 (1.7) | 0 (0) |
| Support experience | ||
| Under 10 years | 20 (33.3) | 55 (75.3) |
| Over 10 years | 40 (66.7) | 17 (23.3) |
| N/A | 0 (0) | 1 (1.4) |
| Type of work | ||
| Social worker | 39 (65.0) | 49 (67.1) |
| Adult guardian | 7 (11.7) | 6 (8.2) |
| Other (nurses, teachers, childcare workers, and others) | 11 (18.3) | 15 (20.5) |
| N/A | 3 (5.0) | 3 (4.1) |
Survey results in Japan
Trends by age
In the analysis of the need for supported decision-making in specific situations, t-test results showed that for more than 50% of items, such as ‘supported decision-making for going out’, the likelihood that supported decision-making would be provided was significantly higher in respondents aged <40 years as compared with their older counterparts (Table 2).
Table 2.
Current status of supported decision-making in Japan: trends by age.
| Under 40 years old |
Over 40 years old |
t | df | p | ||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Valid response | Average | Standard division | Valid response | Average | Standard division | |||||
| Inherent need for supported decision- making | Supported decision-making for eating | 11 | 4.81 | 0.40 | 48 | 4.21 | 0.82 | 2.38 | 32 | 0.00** |
| Supported decision-making for choice of clothes | 10 | 4.90 | 0.32 | 48 | 4.08 | 1.07 | 2.38 | 56 | 0.02* | |
| Supported decision-making for going out | 11 | 5.00 | 0 | 48 | 4.35 | 0.96 | 4.68 | 47 | 0.00** | |
| Supported decision-making for grooming | 10 | 4.90 | 0.32 | 48 | 4.08 | 1.13 | 4.27 | 51 | 0.00** | |
| Supported decision-making for bathing | 10 | 4.80 | 0.42 | 48 | 4.00 | 1.11 | 2.23 | 56 | 0.03* | |
| Things to be aware of when providing supported decision- making | Providing information that is understandable for the persons with intellectual disabilities | 10 | 3.90 | 0.74 | 48 | 4.40 | 0.57 | −2.37 | 56 | 0.02* |
| Understanding the living environment, life history, personal relationships, and preferences of persons with intellectual disabilities | 9 | 4.00 | 0.71 | 48 | 4.48 | 0.55 | −2.31 | 55 | 0.03* | |
| Participation of adult guardian | 9 | 2.78 | 1.20 | 48 | 3.73 | 1.01 | −2.53 | 55 | 0.01* | |
*p < 0.05, **p < 0.01.
In the analysis of what respondents were aware of when they provided supported decision-making, t-test results showed that awareness was significantly higher among respondents aged ≥40 years as compared with their younger counterparts for almost 20% of the items, including ‘understanding the living environment, life history, personal relationships, and preferences of persons with intellectual disabilities’ (Table 2). These results indicate that Japanese respondents aged <40 years felt more strongly about the need for supported decision-making in specific situations, such as ‘supported decision-making for going out’, than their older counterparts.
Trends by years of support experience
In the analysis of actual supported decision-making in specific support situations, t-test results demonstrated that the group with >10 years of support experience was significantly more likely than the one with <10 years of support experience to provide actual supported decision-making for nearly 80% of the survey items, including ‘supported decision-making for going out’ (Table 3).
Table 3.
Current status of supported decision-making in Japan: trends by years of support experience.
| Less than 10 years |
More than 10 years |
t | df | p | ||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Valid response | Average | Standard division | Valid response | Average | Standard division | |||||
| Actual supported decision-making | Supported decision-making for eating | 20 | 2.75 | 1.41 | 40 | 3.68 | 1.25 | −2.59 | 58 | 0.01* |
| Supported decision-making for going out | 20 | 2.85 | 1.27 | 40 | 3.88 | 1.26 | −2.96 | 58 | 0.00** | |
| Supported decision-making for using the bathroom | 20 | 2.05 | 1.19 | 40 | 3.38 | 1.31 | −3.79 | 58 | 0.00** | |
| Supported decision-making for grooming | 20 | 2.10 | 1.33 | 40 | 3.25 | 1.28 | −3.24 | 58 | 0.00** | |
| Supported decision-making for participation in leisure programs | 19 | 2.74 | 1.19 | 40 | 3.88 | 1.11 | −3.58 | 57 | 0.00** | |
| Inherent need for supported decision-making | Supported decision-making for eating | 20 | 3.90 | 0.91 | 40 | 4.53 | 0.64 | −3.08 | 58 | 0.00** |
| Supported decision-making for choice of clothes | 20 | 3.75 | 1.41 | 39 | 4.49 | 0.64 | −2.22 | 23 | 0.04* | |
| Supported decision-making for going out | 20 | 4.00 | 1.17 | 40 | 4.73 | 0.60 | −2.61 | 24 | 0.02* | |
| Supported decision-making for using the bathroom | 19 | 3.32 | 1.42 | 40 | 4.45 | 0.78 | −3.26 | 23 | 0.00** | |
| Supported decision-making for grooming | 19 | 3.63 | 1.42 | 40 | 4.53 | 0.72 | −2.59 | 22 | 0.01* | |
| Supported decision-making for bathing | 19 | 3.47 | 1.35 | 40 | 4.48 | 0.72 | −3.74 | 57 | 0.00** | |
| Supported decision-making for participation in leisure programs | 19 | 4.00 | 1.33 | 40 | 4.78 | 0.58 | −2.43 | 21 | 0.03* | |
| Things to be aware of when providing supported decision-making | Reasonable accommodations in communication with the persons with intellectual disabilities | 18 | 3.89 | 0.68 | 40 | 4.33 | 0.69 | −2.23 | 56 | 0.03* |
| Understanding the living environment, life history, personal relationships, and preferences of persons with intellectual disabilities | 18 | 4.11 | 0.58 | 40 | 4.53 | 0.55 | −2.59 | 56 | 0.01* | |
| Careful explanation of supported decision-making | 18 | 3.67 | 1.03 | 40 | 4.23 | 0.62 | −2.56 | 56 | 0.01* | |
| Relationship between the persons with intellectual disabilities and the family | 18 | 3.83 | 0.86 | 40 | 4.38 | 0.54 | −2.92 | 56 | 0.01* | |
*p < 0.05, **p < 0.01.
Additionally, in the analysis of the need for supported decision-making in specific supported decision-making situations, t-test results demonstrated that the group with >10 years of experience was significantly more likely than the group with <10 years of experience to require supported decision-making for nearly 90% of the survey items, including ‘supported decision-making for going out’ (Table 3). Moreover, in the analysis of what respondents report that they are aware of when they provide supported decision-making, t-test results showed that for approximately 20% of the survey items, such as ‘the relationship between the persons with intellectual disabilities and the family’ and ‘understanding the living environment, life history, personal relationships, and preferences of persons with intellectual disabilities’, the group with >10 years of support experience was significantly more likely to be aware of these items than that with <10 years of support experience (Table 3). These findings indicate that the group with >10 years of support experience in Japan more likely believes that supported decision-making needs to be and is being provided in actual support situations.
Survey results in Taiwan
Trends by age
The t-test results showed that the awareness of specific survey items when they were providing supported decision-making was significantly higher in the group of people aged ≥40 years than in their younger counterparts for nearly 80% of the survey items, including ‘the relationship between the persons with intellectual disabilities and the family’ and ‘understanding the living environment, life history, personal relationships, and preferences of persons with intellectual disabilities’ (Table 4).
Table 4.
Current status of supported decision-making in Taiwan: trends by age.
| Under 40 years old | Over 40 years old | t | df | p | ||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Valid response | Average | Standard division | Valid response | Average | Standard division | |||||
| Things to be aware of when providing supported decision-making | Respect for the self-determination of the persons with intellectual disabilities | 46 | 3.80 | 0.65 | 26 | 4.35 | 0.75 | −3.21 | 70 | 0.00** |
| Providing information that is understandable for the persons with intellectual disabilities | 46 | 3.91 | 0.76 | 24 | 4.46 | 0.66 | −2.99 | 68 | 0.00** | |
| Appropriate support methods for the persons with intellectual disabilities | 46 | 3.74 | 0.80 | 26 | 4.35 | 0.75 | −3.17 | 70 | 0.00** | |
| Respect for decisions that seem unreasonable | 46 | 3.46 | 0.66 | 25 | 3.88 | 0.88 | −2.11 | 39 | 0.04* | |
| Confirmation of the intentions of the persons with intellectual disabilities | 46 | 3.91 | 0.63 | 26 | 4.58 | 0.50 | −4.62 | 70 | 0.00** | |
| Presumption of intention and preference in cases where it is difficult to confirm the intention of the persons with intellectual disabilities | 46 | 3.76 | 0.64 | 26 | 4.27 | 0.67 | −3.19 | 70 | 0.00** | |
| Ensuring opportunities for the persons with intellectual disabilities to experience | 46 | 3.89 | 0.71 | 26 | 4.50 | 0.65 | −3.73 | 70 | 0.00** | |
| Support with stakeholders other than the persons concerned | 46 | 3.76 | 0.67 | 26 | 4.50 | 0.65 | −4.54 | 70 | 0.00** | |
| Reasonable accommodations in communication with the persons with intellectual disabilities | 46 | 3.80 | 0.62 | 26 | 4.42 | 0.58 | −4.17 | 70 | 0.00** | |
| Understanding the living environment, life history, personal relationships, and preferences of persons with intellectual disabilities | 46 | 3.67 | 0.67 | 25 | 4.16 | 0.69 | −2.90 | 69 | 0.00** | |
| Cooperation with related parties and organizations | 46 | 3.98 | 0.59 | 26 | 4.42 | 0.70 | −2.63 | 70 | 0.01* | |
| Careful explanation of supported decision-making | 46 | 3.96 | 0.59 | 26 | 4.31 | 0.68 | −2.20 | 46 | 0.03* | |
| Capacity of decision-making of the persons with intellectual disabilities | 43 | 3.70 | 0.60 | 26 | 4.08 | 0.93 | −2.06 | 67 | 0.04* | |
| Respect for the wishes of the persons with intellectual disabilities | 43 | 3.95 | 0.62 | 26 | 4.42 | 0.64 | −3.02 | 67 | 0.00** | |
| Relationship between persons with intellectual disabilities and their family | 43 | 3.67 | 0.71 | 26 | 4.54 | 0.51 | −5.39 | 67 | 0.00** | |
| Participation of adult guardian | 43 | 3.30 | 0.89 | 26 | 3.88 | 1.03 | −2.48 | 67 | 0.00** | |
| What to be aware of when providing supported decision- making | Providing information that is understandable for the persons with intellectual disabilities | 43 | 4.23 | 0.57 | 26 | 4.54 | 0.51 | −2.25 | 67 | 0.03* |
| Confirmation of the intentions of the persons with intellectual disabilities | 43 | 4.16 | 0.57 | 26 | 4.50 | 0.65 | −2.25 | 67 | 0.03* | |
| Reasonable accommodations in communication with the persons with intellectual disabilities | 43 | 4.12 | 0.63 | 26 | 4.50 | 0.58 | −2.53 | 67 | 0.01* | |
| Understanding the living environment, life history, personal relationships, and preferences of persons with intellectual disabilities | 43 | 4.02 | 0.67 | 26 | 4.50 | 0.65 | −2.89 | 67 | 0.01* | |
| Understanding of how the persons with intellectual disabilities may express their wishes when communication is difficult | 43 | 4.02 | 0.67 | 26 | 4.58 | 0.50 | −3.63 | 67 | 0.00** | |
| Careful explanation of supported decision-making | 43 | 4.07 | 0.63 | 26 | 4.46 | 0.65 | −2.47 | 67 | 0.02* | |
| Respect for the wishes of the persons with intellectual disabilities | 43 | 4.14 | 0.64 | 26 | 4.46 | 0.65 | −2.02 | 67 | 0.02* | |
| Relationship between the persons with intellectual disabilities and their family | 43 | 4.07 | 0.63 | 26 | 4.54 | 0.58 | −3.07 | 67 | 0.00** | |
| What is needed when providing supported decision-making | Respect for the self-determination of the persons with intellectual disabilities | 45 | 4.07 | 0.54 | 24 | 4.42 | 0.72 | −2.10 | 37 | 0.04* |
| Improving the skills of supporters | 45 | 4.27 | 0.69 | 23 | 4.61 | 0.50 | −2.12 | 66 | 0.04* | |
| Cooperation with related parties and organizations | 45 | 4.13 | 0.69 | 25 | 4.52 | 0.51 | −2.44 | 68 | 0.02* | |
| Relationship between the persons with intellectual disabilities and their family | 45 | 4.11 | 0.61 | 23 | 4.57 | 0.59 | −2.93 | 66 | 0.01* | |
| What is inherently necessary for supported decision-making | Appropriate support methods for the persons with intellectual disabilities | 45 | 4.33 | 0.56 | 25 | 4.64 | 0.49 | −2.28 | 68 | 0.03* |
| Presumption of intention and preference in cases where it is difficult to confirm the intention of the persons with intellectual disabilities | 45 | 3.98 | 0.58 | 25 | 4.32 | 0.63 | −2.29 | 68 | 0.03* | |
| Support with stakeholders other than the persons concerned | 45 | 4.11 | 0.65 | 25 | 4.52 | 0.51 | −2.72 | 68 | 0.01* | |
| Improving the knowledge of supporters | 45 | 4.31 | 0.63 | 25 | 4.68 | 0.48 | −2.54 | 68 | 0.01* | |
| Improving the skills of supporters | 45 | 4.29 | 0.63 | 25 | 4.68 | 0.48 | −2.72 | 68 | 0.01* | |
| Cooperation with related parties and organizations | 45 | 4.27 | 0.65 | 25 | 4.64 | 0.49 | −2.49 | 68 | 0.03* | |
| Careful explanation of supported decision-making | 45 | 4.22 | 0.64 | 25 | 4.56 | 0.51 | −2.28 | 68 | 0.03* | |
| Relationship between the persons with intellectual disabilities and their family | 45 | 4.13 | 0.63 | 25 | 4.60 | 0.50 | −3.20 | 68 | 0.00** | |
*p < 0.05, **p < 0.01.
In the analysis of what should be considered when supported decision-making is provided, respondents aged ≥40 years were more likely to be conscious of supported decision-making than their younger counterparts. This percentage was significantly higher for >50% of the survey items, including ‘the relationship between the persons with intellectual disabilities and the family’ and ‘understanding the living environment, life history, personal relationships, and preferences of persons with intellectual disabilities’. Moreover, awareness providing supported decision-making was significantly higher in the group aged ≥40 years as compared with their younger counterparts (Table 4).
In the analysis of the need for actual supported decision-making, the likelihood that the group of people aged ≥40 years needed actual supported decision-making was significantly higher than that in the group of people aged <40 years for almost 20% of the items, including ‘relationship between the persons with intellectual disabilities and their family’ and ‘improvement of supporters’ skills’.
In the analysis of what is needed when supported decision-making is provided, t-test results showed that the likelihood of the group of people aged ≥40 years to consider an item necessary was significantly higher than that in the group of people aged <40 years for almost 30% of items, including ‘relationship between the persons with intellectual disabilities and their family’ and ‘improvement of the supporters’ skills’.
In Taiwan, respondents aged ≥40 years were more likely to have a significantly higher awareness about providing supported decision-making than their younger counterparts. However, for many items, there was no significant difference between the two groups concerning what they needed or wanted in decision-making.
Trends by years of support experience
In the analysis of awareness when respondents were actually providing supported decision-making, t-tests results showed that the likelihood of being aware when providing supported decision-making was significantly higher in the group with >10 years of support experience than in the group with ≤10 years of support experience for >40% of the items, including ‘relationships between the persons with intellectual disabilities and the family’ and ‘understanding the living environment, life history, personal relationships, and preferences of persons with intellectual disabilities’ (Table 5).
Table 5.
Current status of supported decision-making in Taiwan: trends by years of support experience.
| Less than 10 years |
More than 10 years |
t | df | p | ||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Valid response | Average | Standard division | Valid response | Average | Standard division | |||||
| Actual supported decision-making | Supported decision-making for going out | 55 | 2.85 | 1.61 | 16 | 3.56 | 1.15 | −2.14 | 69 | 0.04* |
| Things to be aware of when providing supported decision-making | Respect for the wishes of the persons with intellectual disabilities | 54 | 3.89 | 0.69 | 17 | 4.35 | 0.79 | −2.34 | 69 | 0.02* |
| Confirmation of the intentions of the persons with intellectual disabilities | 54 | 4.07 | 0.64 | 17 | 4.47 | 0.62 | −2.24 | 69 | 0.03* | |
| Ensuring opportunities for the individual to experience | 54 | 4.02 | 0.74 | 17 | 4.47 | 0.51 | −2.34 | 69 | 0.02* | |
| Support with stakeholders other than the persons concerned | 54 | 3.93 | 0.72 | 17 | 4.41 | 0.62 | −2.43 | 69 | 0.02* | |
| Reasonable accommodations in communication with the persons with intellectual disabilities | 54 | 3.93 | 0.64 | 17 | 4.41 | 0.62 | −2.75 | 69 | 0.02* | |
| Understanding the living environment, life history, personal relationships, and preferences of persons with intellectual disabilities | 53 | 3.74 | 0.71 | 17 | 4.24 | 0.56 | −2.64 | 68 | 0.01* | |
| Capacity of decision-making of the persons with intellectual disabilities | 51 | 3.73 | 0.67 | 17 | 4.18 | 0.95 | −2.16 | 66 | 0.03* | |
| Relationship between the persons with intellectual disabilities and their family | 51 | 3.86 | 0.75 | 17 | 4.47 | 0.62 | −3.01 | 66 | 0.03* | |
| What to be aware of when providing supported decision-making | Confirmation of the intentions of the persons with intellectual disabilities | 51 | 4.20 | 0.60 | 17 | 4.59 | 0.62 | −2.32 | 66 | 0.02* |
| Understanding the living environment, life history, personal relationships, and preferences of persons with intellectual disabilities | 51 | 4.06 | 0.68 | 17 | 4.59 | 0.62 | −2.86 | 66 | 0.01* | |
| Understanding of how the persons with intellectual disabilities may express their wishes when communication is difficult | 51 | 4.12 | 0.65 | 17 | 4.53 | 0.62 | −2.28 | 66 | 0.03* | |
| Careful explanation of supported decision-making | 51 | 4.12 | 0.68 | 17 | 4.53 | 0.51 | −2.28 | 66 | 0.03* | |
| Relationship between the persons with intellectual disabilities and their family | 51 | 4.16 | 0.67 | 17 | 4.53 | 0.51 | −2.08 | 66 | 0.04* | |
| What is needed when providing supported decision-making | Provide necessary information that is understandable to the persons with intellectual disabilities | 53 | 4.30 | 0.61 | 16 | 4.69 | 0.48 | −2.33 | 67 | 0.02* |
| Appropriate support methods for the persons with intellectual disabilities | 53 | 4.25 | 0.59 | 16 | 4.63 | 0.62 | −2.23 | 67 | 0.03* | |
| Improving the knowledge of supporters | 53 | 4.28 | 0.63 | 15 | 4.67 | 0.49 | −2.17 | 66 | 0.03* | |
| Improving the skills of supporters | 53 | 4.30 | 0.64 | 14 | 4.79 | 0.43 | −3.37 | 30 | 0.00** | |
| Respect for the wishes of the persons with intellectual disabilities | 53 | 4.23 | 0.64 | 16 | 4.63 | 0.62 | −2.20 | 67 | 0.03* | |
| Relationship between the persons with intellectual disabilities and their family | 51 | 4.16 | 0.67 | 17 | 4.53 | 0.51 | −2.55 | 65 | 0.01* | |
| What is inherently necessary for supported decision-making | Ensuring opportunities for the individual to experience | 53 | 4.13 | 0.65 | 16 | 4.50 | 0.52 | −2.07 | 67 | 0.04* |
| Support with stakeholders other than the persons concerned | 53 | 4.17 | 0.64 | 16 | 4.56 | 0.51 | −2.24 | 67 | 0.03* | |
| Understanding the living environment, life history, personal relationships, and preferences of persons with intellectual disabilities | 53 | 4.13 | 0.62 | 16 | 4.50 | 0.52 | −2.15 | 67 | 0.04* | |
| Understanding of how the persons with intellectual disabilities may express their wishes when communication is difficult | 53 | 4.23 | 0.58 | 16 | 4.63 | 0.50 | −2.49 | 67 | 0.02* | |
| Improving the knowledge of supporters | 53 | 4.36 | 0.62 | 16 | 4.75 | 0.45 | −2.78 | 34 | 0.01* | |
| Improving the skills of supporters | 53 | 4.34 | 0.62 | 16 | 4.75 | 0.45 | −2.92 | 34 | 0.01* | |
| Careful explanation of supported decision-making | 53 | 4.26 | 0.59 | 16 | 4.69 | 0.48 | −2.61 | 67 | 0.01* | |
| Capacity of decision-making of the persons with intellectual disabilities | 53 | 4.13 | 0.65 | 16 | 4.50 | 0.52 | −2.25 | 67 | 0.01* | |
| Experience of the persons with intellectual disabilities | 53 | 4.13 | 0.65 | 16 | 4.56 | 0.51 | −2.42 | 67 | 0.02* | |
| Relationship between the persons with intellectual disabilities and their family | 53 | 4.21 | 0.63 | 16 | 4.63 | 0.50 | −2.42 | 31 | 0.01* | |
*p < 0.05, **p < 0.01.
The t-test results showed that for approximately 20% of the survey items, such as ‘the relationship between the persons with intellectual disabilities and the family’ and ‘understanding the living environment, life history, personal relationships, and preferences of persons with intellectual disabilities’, the group with >10 years of experience was significantly more likely than the group with <10 years of experience to be aware of these items or factors when providing supported decision-making. The likelihood of respondent awareness of an item or factor while providing supported decision-making was significantly higher in the group with >10 years of experience than in the group with ≤10 years (Table 5).
The t-test results showed that for nearly 30% of the items, such as ‘relationship with the persons with intellectual disabilities and the family’ and ‘improvement of the supporters’ skills’, the group with >10 years of support experience had a significantly higher likelihood of needing supported decision-making than that with <10 years of support experience (Table 5).
Moreover, in the analysis of what was originally considered necessary for supported decision-making, t-test results showed that for nearly 50% of the survey items, such as ‘relationship between the persons with intellectual disabilities and the family’ and ‘improvement of the supporters’ skills’, the tendency for the group with >10 years of support experience to consider a factor necessary for supported decision-making was significantly higher than that with ≤10 years of experience (Table 5).
These findings indicate that, in Taiwan, there was no significant difference between the two groups for more than 50% of the items concerning what respondents are aware of, should be aware of, need, and expect when providing supported decision-making.
Status of supported decision-making in Japan and Taiwan
In Japan, people who are relatively younger have a higher awareness of supported decision-making in specific support situations than those relatively older. Further, people who have relatively more support experience have a higher awareness of supported decision-making in specific support situations than those who have relatively less support experience. In contrast, in Taiwan, the relatively older age group had a higher awareness of supported decision-making than the relatively younger age group, and the former tended to be more aware of the need for supported decision-making than the latter.
In both Japan and Taiwan, the relatively older age group and the group with more experience in providing support were more likely than the relatively younger age group and the group with less experience to be aware of ‘the relationship between the persons with intellectual disabilities and their family’ when providing supported decision-making, and ‘the relationship between the persons with intellectual disabilities and their family’ was more likely to be needed when providing actual supported decision-making.
Discussion and conclusions
In both Japan and Taiwan, supporters who were relatively older or had relatively more support experience were more likely to practice supported decision-making than their counterparts. Supported decision-making must be incorporated into the daily support process, not just applied to specific situations (Stainton 2016). Participants were primarily social workers involved in the daily support of persons with intellectual disabilities; therefore, it was possible to capture the status of supported decision-making in the daily support process.
Supported decision-making can be broadly categorized into ‘everyday preferences’, ‘life choices’, and ‘difficult decisions’, with ‘everyday preferences’ being the choices that most people make daily regarding what to wear, eat, and do and where to go (Harding and Taşcıoğlu 2018). In Japan, supported decision-making for ‘everyday preferences’ is considered to be provided by the group with more support experience; moreover, it is assumed that support experience is essential for being able to provide supported decision-making for ‘everyday preferences’.
Moreover, it is necessary to understand the contents of support in supported decision-making (Shogren et al. 2017). In both Japan and Taiwan, the older age group and the group with more support experience were more aware of the elements of support in supported decision-making, such as providing easily understandable information, reasonable accommodation in communication, and careful explanation of the support provided to persons with intellectual disabilities. This suggests that the elements of support are considered necessary for providing supported decision-making by these groups.
In this study, supporters who were relatively older in Taiwan respected decisions that are considered unreasonable by the people around persons with intellectual disabilities in actual supported decision-making. Although supported decision-making represents a shift from substitute decision-making for persons who are judged to lack legal capacity to make decisions (Bigby et al. 2017), supporters who were relatively older, including adult guardians who have traditionally played the role of substitute decision makers, were more likely to be aware of the importance of dignity of risk.
The older age group compared to the younger group in Taiwan was aware of the appropriate support methods or those inherently necessary in providing supported decision-making to persons with intellectual disabilities. In relation to supported decision-making, the supporters’ understanding of persons with intellectual disabilities and knowing how to provide the needed support are essential (Shogren et al. 2017; Knox et al. 2016); thus, it is necessary to find appropriate support methods to provide the needed support.
The relationship between persons with intellectual disabilities and their families plays an important role in supported decision-making (Douglas and Bigby 2020; Stainton 2016; Werner and Chabany 2016; Kohn and Blumenthal 2014). In this study, the older age group and the group with more support experience in both Japan and Taiwan were more aware of the relationship between persons with intellectual disabilities and their families when providing supported decision-making. In this connection, it is important for a person, who has a good understanding of supported decision-making, to clarify the roles of family members in supported decision-making and collaborate with other supporters; this should be considered when establishing a supported decision-making system.
In the end, in relation to supported decision-making in Japan and Taiwan, the older age group and the group with more support experience had a higher awareness of supported decision-making and were considered to be provided with it in various support situations. Furthermore, this study has clarified the awareness of and actual situations of supported decision-making.
Study limitations and future research directions
One limitation of this study is that the target pool recruited to verify the research question was biased. Survey targets were limited to attendees of the lectures on supported decision-making held in Japan and Taiwan. Therefore, it is possible that the survey targets had an unusually high awareness of supported decision-making. Bias may have also stemmed from the fact that the basic attributes of the survey targets, such as age and support experience, could not be controlled. Those biases should be addressed in future research.
Second, the content of this study was limited to understanding the status of supported decision-making. It was not possible to clarify the factors behind study results owing to all the differences in the basic attributes of the survey targets, such as age and support experience. In future research, the aim should be to elucidate all the factors that lead to such results.
Third, the elements that supported decision-making by the participants could not be specifically and comprehensively verified. Therefore, a specific and comprehensive examination of the factors necessary for supported decision-making is needed in future studies.
Fourth, the cultural background of the participants was not considered. Practices and research on supported decision-making for persons with intellectual disabilities have been developed mainly in Western countries, while in East Asia, to which Japan and Taiwan belong, they are in their infancy. Future studies on supported decision-making for persons with intellectual disabilities in East Asia need to consider the families that primarily care for persons with intellectual disabilities.
Fifth, while this study clarified the current status of supported decision-making in providing daily support by professionals based on the idea that it needs to be integrated into the daily support process (Stainton 2016), the important role of families in supported decision-making (Douglas and Bigby 2020; Stainton 2016; Werner and Chabany 2016; Kohn and Blumenthal 2014) needs to be examined in the future.
Sixth, although individuals with more support experience in both Japan and Taiwan were found to be aware of and practiced supported decision-making, it was not possible to verify the extent to which it was provided in daily support or whether awareness regarding it was appropriate; thus, these factors need to be examined in future studies.
Acknowledgements
This research was conducted under the FY2019 Faculty Exchange Program between University of Tsukuba and National Taiwan University. This research was also conducted under the cooperation of the Japan Network of Supported Decision and the Parents Association for Persons with Intellectual Disabilities, Taiwan. We express our gratitude to both organisations. We also thank Editage (www.editage.com) for English language editing.
Correction Statement
This article has been corrected with minor changes. These changes do not impact the academic content of the article.
Disclosure statement
No potential conflict of interest was reported by the authors.
Data availability statement
The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request