Disability Policy Meets Cultural Values: Chinese Families of Children and Young People with Developmental Disabilities in Taipei and Sydney

ABSTRACT

Supporting families of people with developmental disabilities from culturally diverse backgrounds is receiving increased attention in the era of globalisation. However, there is little information about how disability policy and cultural values work together to support families. This article examined how disability policy and Chinese cultural values influence family care of children and young people with developmental disabilities. By comparing qualitative interview data from Chinese families in Taipei (15) and Sydney (10), we analysed how their expression of cultural values in family care differs by policy context, relative to ethics of care claims for recognition, rights and redistribution. We found that positive expressions of Chinese culture in family care fade if policies do not complement them. Policies can alleviate potential tension with cultural values in three ways: reinforcing family capacity to care; ensuring the rights of both family caregivers and people with disabilities; and extending care choices for families. These approaches resonate with ethics of care principles. We argue that culturally responsive disability policy for families means working with cultural values to achieve ethics of care. This implies that incorporating principles of ethics of care could inform cultural responsiveness in disability policy development.

KEYWORDS:

• Taiwan
• Australia
• Confucian values
• disability support
• cultural responsiveness

Introduction

In the time of global mobility, a challenge for many countries is how to develop culturally responsive disability policy to respond to the needs of families of people with disabilities from culturally diverse backgrounds (Soldatic et al. 2020). The current research on disability support for people from culturally diverse backgrounds has primarily focused on two topics: their experiences accessing and using disability support, and the response of disability services organisations to meet their support needs (Fang, Fisher, and Li 2021; Senaratna, Wehbe, and Smedley 2018; Su, Khanlou, and Mustafa 2021). The research has not focused on how to improve disability policy to better engage with cultural values and respond to the support needs of people with disabilities and their families. This knowledge is especially important to support family care of children and young people with developmental disabilities from culturally diverse backgrounds, given the importance of early intervention (WHO & UNICEF 2012) and the lifelong support that many of them need (McKenzie 2016). Current evidence emphasises the importance of family care to families from a Chinese background (Shang and Fisher 2016; Sim et al. 2021). Empirical evidence is needed on how disability policy can work with Chinese cultural values in ways that enhance the family care of children and young people with developmental disabilities.

Chinese culture and caring for people with disabilities

The social value of parenting people with disabilities is not publicly recognised by Chinese culture (Chou, Kröger, and Pu 2018). Caregiving is shaped by two cultural influences: Confucian ethics on care as a virtue by cultivating one's inner qualities (Wada 2014); and cultural stigma toward disability (Colker 2015; Ow, Tiong, and Goh 2004).

In Chinese families, the rights of people with disabilities are partially ensured. Chinese culture stresses a sense of responsibility for families to care for people with disabilities, which is also observed in other cultures of course (Chang 2009; Hsueh, Hu, and Clarke-Ekong 2008). However, Chinese families tend to overprotect people with disabilities without considering their preferences (Shang and Fisher 2016). The rights of caregivers are rarely addressed in Chinese culture (Chou et al. 2014; Chou, Kröger, and Pu 2018). Families of people with disabilities often hold a strong sense of shame and stigma. Mothers, in particular, may be blamed for the birth of a child with disabilities (Colker 2015) and accused of violating a cultural taboo (Ow, Tiong, and Goh 2004). Cultural values discourage caregivers from seeking external support, expecting them to prioritise family devotion and internalise their struggles for family harmony (Wada 2014).

Care responsibilities and resources are usually shared with other relatives because Chinese culture emphasises collectivism (Hsueh, Hu, and Clarke-Ekong 2008). Like many other cultures, caring for people with disabilities is significantly gender-biased, and women are most likely to assume all or most of the responsibilities (Chou et al. 2014). Caregiving responsibilities are automatically passed down through generations, influenced by filial piety and power hierarchy within Chinese culture (Wada 2014).

These mixed influences of cultural values on family care raise questions about what would happen when disability policies meet Chinese culture when these values may differ from each other. A related question is about family care of older people with disabilities, which is not directly explored in this article.

Disability policy and Chinese families of people with disabilities

The research on how Chinese families of people with disabilities access and use disability support has focused on China (Clark, Zhou, and Du 2019; Zheng et al. 2016), Hong Kong Special Administrative Region (Kwok and Kwok Lai Yuk Ching 2022; Tait et al. 2016), Taiwan (Chang 2009; Chang and McConkey 2008), and in diaspora countries of Canada (Lee and Zhu 2021; Su, Khanlou, and Mustafa 2021), United States (DeLambo, Chung, and Huang 2011; Hwang et al. 2020), and Australia (Fang, Fisher, and Li 2021; Liu and Fisher 2017; Sim et al. 2021). The research has not examined how disability policy engages with and complements Chinese cultural values to support the family care of people with disabilities.

The limited research on disability support policy and Chinese families in the diaspora concentrates on how families respond to local disability policy contexts and has conflicting findings. Hwang et al.’s (2020) review found that the formal disability support system in the United States assumes acculturation of Asian migrant families of children with disabilities. Turner’s (2010) case study of a Chinese family who brought their daughter with disabilities home from foster care, contrary to the medical team's advice, was an example where the parents’ preferences overrode the child's right to receive professional care. The third group of studies demonstrated where Chinese parents accommodated values from both cultures (Lee and Zhu 2021; Sim et al. 2021; Su, Khanlou, and Mustafa 2021). A missing focus is how disability policy enhances cultural values about family care.

The paucity of empirical evidence impedes the development of culturally responsive social policy. Dressler, Balieiro, and Dos Santos (1997) argue that social support should be consonant with families’ cultural notions of preferred support. On the other hand, Chattoo and Atkin (2012) warn that overemphasising cultural components risks objectifying people through cultural stereotypes. Much discussion on cultural responsiveness has focused on social service delivery (Fang, Fisher, and Li 2021; Su, Khanlou, and Mustafa 2021) where culturally responsive service delivery is defined as a process that integrates knowledge of particular cultures, attitudes to cultural diversity, and skills for intercultural encounters (Garrido, Garcia-Ramirez, and Balcazar 2019). Evidence at the policy level could widen the theoretical development of this concept.

Ethics of care

This study applied ethics of care as the analytical framework for two reasons. First, it encompasses the private, public and cultural aspects of care practice (Williams 2018). Second, it aims to promote the wellbeing of people involved in care practice (Hankivsky 2005; McKenzie 2016).

Ethics of care first emerged as a liberal rights-based ethical theory, and it has subsequently evolved across disciplines to be more inclusive of social and cultural variation. Gilligan (1982) first proposed ethics of care to argue against the male-biased liberal mode of moral reasoning and to call for a recognition of the value of norms associated with care practice. Tronto (1993) went further, calling for a recognition of the social and political value of care practice and suggested efforts at the policy level to improve social justice in caregiving and receiving. She identified four components that constitute ideal care practice: 1. Attentiveness, being aware of the needs of others; 2. Responsibility for care, meeting the care needs of both the caregivers and care receivers; 3. Competence, the skill of providing quality care; 4. Responsiveness, ensuring the needs of people, especially care receivers, are met and abuse is identified (McKenzie 2016; Tronto 1993). Williams (2018) extends Tronto's work, arguing that claims of ethics of care cluster around three areas that collectively feature ‘intersectionality in action’: 1. Claims for recognition, recognising the social and economic value of care practice; 2. Claims for rights of caregivers and care receivers; and 3. Claims for redistribution, redistributing resources and responsibilities for care. Tronto (1993) and Williams (2018) theorise how to achieve ethics of care and the goals (Table 1).

Table 1. Ethics of care: process and goals.

Process: three claims to achieve care ethics	Goals: four components of care ethics
1. Claim for recognition of the value of care practice	1. Attentiveness
2. Claim for social rights associated with care	2. Responsibility
3. Claim for redistribution of care resources and responsibilities	3. Competence
	4. Responsiveness

Source: authors’ compilation.

The development of ethics of care is influenced by Western feminism. However, values and norms associated with care practice are not exclusive to Western philosophy. Wada (2014) revealed the affinity of ethics of care with cultural values such as Confucian care ethics. Confucian ethics focus on the value of care practice at the private level, where caregiving is a virtue for the caregiver to cultivate their inner qualities (Wada 2014). Ethics of care recognises the value of care at the private and at societal levels. The right to receive care is acknowledged in Confucian ethics, but recognition does not extend to the right to express preferences or adjust to circumstances. Confucian ethics rarely refer to the rights of caregivers (Wada 2014; Yuan 2002). In contrast, ethics of care recognises the rights of both caregivers and recipients and the fluidity of these rights. Finally, the redistribution of care responsibilities and resources happens at the private level in Confucian ethics (Wada 2014). Ethics of care also includes the distribution of responsibilities and resources in the public domain as a democratic process for justice and equity.

Little empirical evidence is available to inform how ethics of care can influence disability policy. Hankivsky (2005) applied ethics of care to inform social policy in Canada. McKenzie’s (2016) studied the implications of ethics of care for disability policy in South Africa. Neither included culture, another important variable in care practice, in their investigations.

Materials and methods

Research design

The research question was how do disability policies work with cultural values to enhance family care? To understand the variation of cultural expression in different policy contexts, we conducted a qualitative comparative study with Chinese families of children and young people with developmental disabilities in Taipei and Sydney, where the disability policy systems have similarities and differences. Ethical approvals were from the University of New South Wales (HC190036) and National Taipei University (201910ES020).

Data collection

The study adopted qualitative methods to collect information through policy analysis and semi-structured interviews. The disability policies in Taiwan and Australia were purposefully selected as relevant to supporting families of children and young people with developmental disabilities. Convenience sampling was used to recruit interview participants. The researchers had relationships with disability support organisations and peer support groups in the two cities. Voluntary participant recruitment followed the criteria of family carers speaking English or Mandarin and having a Chinese family member under 20 years old with developmental disabilities. We set the age criteria based on the definition of children by the United Nations and the definition of young people by the World Health Organisation (United Nations 1989; WHO 2014). Chinese cultural background in the Taipei sample refers to Han Chinese. Chinese cultural background in the Sydney sample refers to new migrants with a Chinese cultural background from any country. Duration of living in Australia was not a criterion because previous research found that many barriers to support faced by migrant communities remain over time and across generations (Senaratna, Wehbe, and Smedley 2018).

Participant information and consent forms were provided to participants before data collection. Written or recorded audio consent was obtained prior to interviews. Two researchers conducted interviews in person in Taipei from December 2019 to March 2020 in Chinese. Two bilingual researchers conducted interviews in person or via phone in Sydney from April to June 2019, in Mandarin or English, depending on the participants’ preference. The semi-structured interviews covered the topics of how the participants arranged care within the families and why they made these choices; how the care affected their family life; their experience of arranging and using formal disability support; and their comments on local disability policies. The interviews were digitally recorded. Notes were taken during interviews, and reflections were journaled afterward.

Recruitment and interviews were conducted in parallel. Recruitment for interviews continued until data saturation when new data became repeated about Chinese cultural values, local disability policies, and the care of children and young people with developmental disabilities (Saunders et al. 2018). The final sample was 15 families from Taipei and 10 from Sydney (Table 2).

Table 2. Participant characteristics Taipei and Sydney.

Taipei participants: n = 15
Child name	Relation to child	Child disabilities	Child age	Family
				Education		Family income
Xiao An	Aunty	Developmental delay	8	Vocational high school		Low
Xiao Bai	Mother	Cerebral palsy	10	College		Middle
Xiao Cao	Mother	Autism	8	Vocational high school		Middle
Xiao Ce	Mother	Intellectual and multiple disabilities	10	Vocational high school		Low
Xiao Ding	Mother	Autism	12	University		Low
Xiao En	Mother	Intellectual and multiple disabilities	17	University		Low
Xiao Gao	Father	Intellectual and multiple disabilities	19	Middle school		Low
Xiao Hao	Mother	Developmental delay	8	University		Middle
Xiao Li	Mother	Cerebral palsy	12	College		Middle
Xiao Long	Mother	Autism	11	University		Middle
Xiao Mo	Mother	Autism	8	Middle school		Low
Xiao Tang	Mother	Intellectual and multiple disabilities	13	University		Middle
Xiao Wu	Mother	Intellectual and multiple disabilities	19	Vocational high school		Middle
Xiao Yan	Mother	Autism	7	University		Middle
Xiao Yu	Mother	Attention Deficit Hyperactivity Disorder	8	University		Low
Sydney participants: n = 10
Child name	Relation to child	Child disabilities	Child age	Family*
				Years in Australia	English capacity	Family income
Xiao Da	Mother	Autism	20	23	Low	Middle
Xiao Dai	Mother	Autism	11	15	Basic	Low
Xiao Jing	Father	Autism	7	5	Fluent	Middle
Xiao Kang Xiao Qing	Mother Same Mother	Autism Down syndrome	7 3	36	Fluent	Middle
Xiao Lan	Father	Autism	6	19	Fluent	Middle
Xiao Lee	Mother	Autism	18	30	Basic	Low
Xiao Lu	Mother	Attention Deficit Hyperactivity Disorder	10	10	Low	Low
Xiao Nie	Mother	Developmental delay	5	6	Basic	Low
Xiao Qi	Mother	Autism	4	9	Fluent	Middle
Xiao Xing	Father	Autism	17	7	Fluent	Middle

Note: Child name – alias.

*Family self-reported.

Data analysis

Thematic analysis was applied deductively to identify, analyse and report themes across the policy and interview data against the three claims and four elements of ethics of care (Table 1). The researchers generated initial codes, collated them into themes, categorised the themes based on their attributes, and compared them with the analytical framework. We also noted any elements in the data not mentioned in the literature. Two rounds of coding were made for reliability. Four bilingual researchers conducted the first round of coding and summarised the codes. In the second round, the whole team read the summaries and transcripts to validate the codes from the first round. Discussions on the findings continued iteratively throughout the data analysis (Braun and Clarke 2006).

Results

Disability policies in Taiwan and Australia

This section introduces the disability policy context in Taiwan and Australia. National policies were analysed because both countries have centralised disability policy systems. The policies were selected as relevant to supporting families of children and young people with disabilities (Table 3). We analysed the policies relative to ethics of care.

Table 3. Policies in Taiwan and Australia.

	Taiwan	Australia
Rights	Act to Implement the Convention on the Rights of Persons with Disabilities 2014	United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) – ratified 2008
	People with Disabilities Rights Protection Act 2007 (PDRPA)	National Disability Strategy 2021–2031
	Protection of Children and Youth Welfare and Rights Act 2000	National Disability Insurance Scheme Act 2013
	Taiwan Special Education Act 1984	The Carer Recognition Act 2010
		Disability Standards for Education 2005
		Disability Discrimination Act 1992
		National Employment Standards
Recognition	N/A	Carer Recognition Act 2010
Redistribution	Long-Term Care Services Act 2019 (LTCSA)	National Disability Insurance Scheme
	Special Care Allowance	Integrated Carer Support Service (ICSS)
	Special Tax Deduction for people with disability	Interpreting services, sign language
		Carer Payment, Carer Allowance

Note: Taiwan adheres to the UNCRPD through local legislation since it is not a UN member.

Policies in Taiwan

The composition of the disability policy system in Taiwan and the content of each policy reflect and strengthen Confucian ethics. Since the 1980s, the family structure in Taiwan has become smaller and more diverse, leading to a decline in the traditional role of families in providing disability support (Chang 2007). Chang (2009) states that disability welfare policy gradually developed during the period. Nevertheless, the civil code still assumes the family care responsibilities for people with disabilities (Chou et al. 2014). Taiwan adheres to the UNCRPD through local legislation, the Act to Implement the Convention on the Rights of Persons with Disabilities 2014. Taiwan issued three Acts: Taiwan Special Education Act, Protection of Children and Youth Welfare and Rights Act, and People with Disabilities Rights Protection Act, to protect the rights of children and young people with disabilities to receive early intervention, medical treatment, schooling, and family support. In 2023, Taiwan amended the Special Education Act, emphasising the rights of children and young people with disabilities within schools. The amendment involved appointing a representative for students with disabilities to sit on the Special Education Advisory Committee, mandating schools to provide essential resources to support these students, and developing more disability-friendly classrooms. However, in 2020, the amendment to the Protection of Children and Youths Welfare and Rights Act did not highlight the rights of children and youth with disabilities nor recognise the value of family care. Furthermore, employment hardship makes many parents of people with disabilities, especially mothers, trapped in family care, and Taiwan has not been well institutionalised in supporting them (Chou, Kröger, and Pu 2018). No formal policy has been issued to recognise the social and economic value of family care.

People with Disabilities Rights Protection Act 2007 (PDRPA) shows the government's willingness to bear responsibility for supporting and enhancing family care. Article 50 lists 10 support items that government should provide and ‘other services related to supporting people with disabilities’, demonstrating the government's sense of responsiveness to the emerging support needs. Article 51 outlines a list of support that the government should provide for families of people with disabilities, including respite, capacity building, and emerging new support needs to improve carers’ life and competence in care (Tronto 1993). However, the PDRPA does not articulate how the agency of people with disabilities and their families is reflected in the listed support items.

In 2019, Taiwan issued the Long-term Care Service Act to implement the government's redistribution of care responsibilities and resources (Williams 2018). Articles 9–13 outline formal support items for people with disabilities and their families. Article 40 states five principles of quality long-term care, including person-centred, transparency, and participation of families of care recipients. However, no information is found on supporting people with disabilities to make decisions and exert their agency in the process of support. Moreover, Article 3 defines people with disabilities as passive recipients of support due to their physical or mental impairments. Additional policies on redistributing caring resources include the Special Care Allowance that was issued in 2012 for low-income families to receive additional financial support. Families with people with disabilities are eligible for tax deductions depending on the person's disabilities.

Access to support is hampered by the gap between policy design and implementation. The Parallel Report on the UNCRPD by the League for Persons with Disabilities, Republic of China (2017) showed that 92.84 per cent of people with disabilities lived with their families and the support for their families was insufficient. The most accessible support is early intervention, medical treatment, and schooling for children and young people with disabilities and benefit-in-cash support for their families. Few families know about informational, emotional, respite, and in-home care services. The International Review Committee of CRPD (2017) states that most people with disabilities in Taiwan do not receive sufficient support to participate in the community and live independently. The second international review emphasises the need for Taiwan to ensure that people with disabilities receive essential support, irrespective of their residence (IRC 2022). Moreover, it advocates for removing parental responsibility for financially or personally supporting children with disabilities in school. These recommendations underscore the deficiency in supporting people with disabilities to live independently and the heavy reliance on family support within the existing disability policy in Taiwan.

Policies in Australia

Australia ratified the UNCRPD in 2008. Various policies have been issued to implement Australia's UNCRPD obligations. Australia's disability policy system and the content of the policies align with ethics of care.

The National Disability Strategy 2021–31 and Disability Standards for Education establish the principles of respecting the rights of children and young people with disabilities within their social context, inclusive support and education, and early intervention across all government-funded support. The Disability Discrimination Act 1992 sets out the mechanisms for enforcing disability rights through complaints and reviews. The National Disability Insurance (NDIS) Act 2013 and Carer Recognition Act 2010 stress the rights of people with disabilities and families in disability support. Sections 4 and 5 of the NDIS Act stress equal rights between people with disabilities and other groups of people; emphasise the government's responsibility to provide individualised support; and state that the agency and capacity of independent decision-making should be supported through government-funded disability support.

The Carer Recognition Act 2010 recognises the social and economic value of care. The government has the responsibility to support carers’ needs in a timely and responsive way; these needs are beyond the caring role, including employment and education rights; and the inclusion of carers’ expertise and participation in formal disability support. The National Employment Standards are minimum employment entitlements, including flexible working arrangements and carers’ leave for carers of children with disabilities (Kröger et al. 2013).

The policies at the national level aim to redistribute care responsibilities and resources. The NDIS provides individualised support funds to people with disabilities. The Integrated Carer Support Service provides carers of people with disabilities with tailored support, ranging from emotional, financial and informational support to personal skill building. A small, means-tested Carer Payment is supplemented with the Carer Allowance for the cost of family care of people with disabilities. The government also provides Auslan interpreting for people using sign language and translation support for carers from culturally diverse backgrounds. Many families have difficulty gaining the support they need (ABS 2014). Reasons include exclusive eligibility criteria, inaccessible information, and local availability of support (Kröger et al. 2013).

In summary, the disability policy systems in Taiwan and Australia reflect Confucian ethics and ethics of care, respectively. Studies have reported the discrepancy between the policy design and implementation in both locations. Accessing quality disability support is a challenge for the families.

Comparative family experiences of Chinese values and policy

The findings are organised according to the three interrelated claims of ethics of care, found in the data: recognition – appreciation of the value of care in the family; redistribution – resources to support care; and rights – to give and receive care.

Recognition of the value of care

The Chinese families in both cities seemed to internalise the care of people with disabilities as a sense of responsibility, justified by their cultural values. Xiao Lee's mother in Sydney remarked that her care was full-time, 24/7 work. She used cultural expectations about Chinese mothers to motivate herself:

Maybe mothers show greater love … I accept my son's autism … For my son, I forced myself to go out and communicate with people, collect information and educate him. (Xiao Lee's mother)

The culturally driven sense of responsibility was embodied in the families’ care activities as well. A mother in Taipei said:

We try our best every single day when we parents are able to take care of him … His disability strengthens our family bond. (Xiao Wu's mother)

All the families in both cities reported that they provided their children with the best resources they could collect and afford. These positive impacts of Chinese culture on family care were overridden by cultural constraints over time. Culturally driven gendered care was obvious in both cities where women assumed most responsibilities. Many mothers in Taipei said their sense of responsibility changed to obligation and exhaustion after years of intensive family care with limited formal support. These attitudes doubled the pressure on the mothers, both from the care obligation without formal support and from the cultural pressure not to express their strain. A mother in Taipei recalled how her husband referred to the traditional image of good mothers in Chinese culture:

Sometimes I complained to Xiao Bai's father, telling him that I am a human and I need rest and relaxation. Yet, his focus was: ‘But you are Xiao Bai's mother. Being a mother means you need to be tough to endure this’. (Xiao Bai's mother)

The extent of cultural influence on family care in Sydney varied from Taipei. In the Sydney families, the mothers were the primary carers. Fathers from a well-educated and middle-class background actively shared care responsibilities with their spouses, although the mothers were still the primary carers. Two possible factors were: migration left the families fewer choices but to share the responsibilities between the parents; and education led the fathers to be less influenced by chauvinism and more respectful to women. The Sydney parents with the Care Allowance regarded the government benefit as recognition of the value of their family care, although the Care Allowance was only a small contribution to their spending on their children. A mother in Sydney recalled that free and professional counselling reduced the cultural stigma toward disability she was experiencing and increased her confidence in mothering:

My father demanded that I reflect on my mistakes in the marriage and having a son with autism … I was told by social workers in Australia not to self-blame. I did nothing wrong. They [the social workers] helped me believe that I am a good mother. (Xiao Nie's mother)

In summary, Chinese culture stressed responsibility for family care. This sense of responsibility motivated families to care for their children with developmental disabilities. The children and young people received family care even in the face of limited formal support. On the other hand, Chinese culture pressured women within the immediate family. The pressure worsened over time when no formal support was in place.

Redistribution of resources to support families

All the families in both cities expressed the need to receive more government-funded support. The families in both cities referred to three types of support to sustain family care: respite, emotional support, and capacity building for quality family care.

Most families in Taipei and Sydney said that respite support would be helpful, especially for the new migrant families in Sydney. Yet, no Taipei families and few Sydney families knew about any government-funded respite support. Xiao Ding's mother in Taipei said family support needs seemed to be invisible to the government:

My parents are overworked and even get injured taking care of Xiao Ding … The government support system is not taking care of the family as a support unit … and is [only] for children with disabilities. (Xiao Ding's mother)

A mother from Sydney spoke about her urgent need for respite:

I want to have a short break. … Once I was sick in the hospital … A nurse in the hospital helped me look after my baby and let me take a shower. I need this kind of person. (Xiao Nie's mother)

Almost all the families reported their emotional pressures, partially due to the traditional cultural stigma toward disability and partially from years of family care, but the use of counselling to manage the pressure differed between Taipei and Sydney. Many Taipei mothers confided that they never received professional emotional support. Two mothers were referred to counselling only because social workers knew they beat their children. Other families were either unaware of counselling or gave up hope that external support could address their problems. Xiao Hao's mother in Taipei refused counselling services because she doubted that professionals could reduce the pressure on her from so many intersecting problems. In contrast to Taipei, most Sydney families were aware that they could receive ten free sessions of counselling each year, although not all of them had used it. Those who had used it reported that the quality varied.

Many families in both cities highlighted their unmet expectations of support to enhance their capacity for family care. Xiao Hao's mother and Xiao Ding's mother from Taipei both emphasised that taking care of their children with disabilities was demanding because quality care involved various capacities: navigating and mobilising resources in the family, community, and formal care system and making plans and decisions for the children. They said there were almost no resources to train families and few qualified social workers to support the families to develop all the necessary capacities.

The Sydney families knew they were entitled to resources for carers but some said it was hard to find quality support. Xiao Nie's mother said that she was still unfamiliar with the NDIS, despite having a bilingual NDIS coordinator:

The NDIS asked me to select service providers, but I really don't know how to do so … I don't know how to ask the right questions. (Xiao Nie's mother)

The unmet support needs in Taipei seemed to be reinforced by the income differences among the families. Xiao Yan's mother enrolled in a postgraduate programme in special education to better support her son. Many wealthy families paid domestic or migrant workers to care for their children. They also used their social networks to find out better quality government support. On the other hand, most low-income families had no resources to supplement government-funded support. Similar support disparity existed between low-income families and those with high education and income in Sydney. The NDIS is designed to mediate the resource gap between families, but the impact varied by case. A positive example addressing the disparity was an experienced bilingual social worker who specialised in information and referral and helped Xiao Dai's mother, a single mother with limited English. She provided information tailored to the mother's needs, including finding a local school, counselling, and respite support. She referred the mother to a legal service when she noticed the domestic violence and signed her up for a free vocational training course to develop caring skills. The mother said that the course was one of her rare moments of serenity and confidence.

In summary, the government resource redistribution to support families’ needs for respite, emotional, and capacity affected the other two claims in the ethics of care. Most Taipei families indicated that long-term family care exhausted them especially when they had limited family-centred support from the government. It compromised their motivation and appreciation of the value of their family care, leaving them feeling trapped, at the cost of the rights of the family and people with disabilities. These pressures were also present in the Sydney families but were associated with access to quality support resources. The families knew that they were entitled to a range of government-funded tailored support, even if they could not find sufficient quality support.

Rights to give and receive care

Responding to the rights of people giving and receiving family care varied between the cities. The variation seemed to be associated with the availability of formal disability support and the extent to which the formal support was rights-based. When no formal support was available to supplement family care, the families explained away their rights on the basis of their cultural values. A high level of cultural compromise was noted in almost all the Taipei families. Xiao Ce's mother from Taipei regarded intergenerational care as the default position justified by family collectivism:

We have no other choices to resort to Xiao Ce's grandma can't reject the responsibility. (Xiao Ce's mother)

The influences of paternalism and filial piety seemed to collectively reinforce the long-term care responsibility of siblings of children and young people with developmental disabilities in Taipei. Many families thought that the limited formal support for adults with disabilities meant it was culturally natural for them to pass on the caregiving responsibility to their other children and it was unnecessary to seek their consent. Xiao Wu's mother had already started instilling a sense of responsibility into her older daughter:

We kept telling Xiao Wu's sister that Xiao Wu is her responsibility in the future and that she needs to take care of Xiao Wu … She must bring her potential boyfriend home and only the one who accepts Xiao Wu can be accepted by our family. (Xiao Wu's mother)

Sydney families also expected siblings of children and young people with developmental disabilities to do some of the family care, regardless of their consent. The relatively comprehensive formal care services for people with disabilities and resources for Sydney families meant that the siblings could expect to assume a lighter responsibility than their peers in Taipei. The care expectations of the siblings in Sydney varied by the families’ access to quality formal disability support. Most of the Sydney families felt reassured about their children's future because they knew that the government-funded support for adults with disabilities. They expressed the responsibility of their other children as supplementary to the government support. Xiao Dai's mother planned that when she dies, Xiao Dai would stay in a group home and his brother would visit him to ensure support was of good quality. Xiao Dai's brother was still a toddler, but it seemed to the mother that this was a natural responsibility for a sibling to assume.

Another aspect of the rights dimension is the rights of the children and young people with developmental disabilities themselves. All the Taipei families reported that they decided on how to care for their children while taking little consideration of their children's preferences. This practice indicates the significant influence of Chinese culture on Taipei families, and the local disability support policy had little impact on the pattern. A typical example was Xiao Wu's mother and her husband decided that Xiao Wu would not attend any sleepover activities, regardless of Xiao Wu's preference:

Xiao Wu is the centre of our family … Once he had a sleepover in a school activity … We felt that we lost our focus [that night] … His father and I made a decision afterward that he must stay within the range that we can see him. (Xiao Wu's mother)

The NDIS and other disability policies in Australia emphasise the rights of people with disabilities to receive support. All the families agreed that the NDIS process where the family, people with disabilities, and professionals participated in the planning was a good approach. The parents said that the values in the NDIS process encouraged them to consider their child's preferences, which was a new concept for some families with more traditional values. Xiao Xing's father reflected on parenting in Chinese families since he migrated to Australia:

Asian parents are protective … Australian parents will give their children a lot of independence … As an Asian, it might be a new way of parenting. (Xiao Xing's father)

Discussion

This research used the framework of ethics of care (Tronto 1993; Williams 2018) to analyse the care experiences of families of children and young people with developmental disabilities with Chinese cultural values, in the context of local disability support policies. We found that the Chinese family experiences in Taipei and Sydney reflected their cultural values. Features of their care were a strong sense of responsibility for family care; and a tendency to subsume the rights and agency of women family members and siblings, as well as the rights of the children and young people with developmental disabilities.

This study contributes to research about the relationship between culture and policy within a set of cultural values in different policy contexts as a way to forward that understanding. First, we identified the cumulative impact of Chinese cultural values on the families and people with disabilities over time, whilst previous studies tended to focus on static cultural influences (Hwang et al. 2020; Sim et al. 2021). The findings of this study suggest that the tensions between the positive expressions of Chinese culture that motivate family members to assume care responsibilities, and the compromise of their rights, are initially manageable. However, over time the conflicts, such as cultural stigma toward disability, gender disparity, family collectivism over individuality, and lack of participation by people with disabilities in decisions about them, accumulate and override their sense of pride in fulfilling family responsibilities, if external support does not complement their pride in cultural values.

Second, the international comparative analysis revealed how different disability policy contexts reinforce or undermine Chinese cultural values over time. The disability policy system in Taiwan rarely recognised and supported the value and sustainability of caregiving in family. By contrast, the Sydney data suggested that at its most responsive, disability policy could strengthen the positive expression of culture, while also mitigating the negative ones. Government-funded informational, emotional, and respite support can increase families’ capacity to care. Disability support emphasisng rights and participation increases parents’ awareness of their children's rights and preferences. Offering extended care choices for families, such as comprehensive formal care support for people with disabilities at different stages in life, helps reduce siblings’ caregiving responsibilities. Disability support system that incorporates gender equity values can gradually lead parents to accept new values that differs from their conventional gender norms to better support themselves and their children. These findings also confirm that culture should not be construed as a singular or stable influence as it involves dynamic interactions with other factors across systems (Gopalkrishnan 2019). The implication for culturally responsive disability policy is two-fold: it justifies the necessity for government-funded disability support to supplement family care and indicates how policy can effectively work with Chinese cultural values.

Third, the international comparative analysis provided empirical evidence to confirm the relevance of ethics of care to families with Chinese values. Regardless of the local disability policy systems and their underlying cultural values, the Chinese families in both cities shared a similar expectation about ideal family care in the long term. The expectation aligned with the three claims and four components of ethics of care (Tronto 1993; Williams 2018). More specifically, the Chinese families expected that the value of family care could be recognised to sustain and motivate the long-term care of people with disabilities. They perceived the government's redistribution of caring resources as a form of recognition of the value of family care. They expected to have sufficient and quality resources to share their care responsibility. They also embraced a rights-based approach to support the wellbeing of families and people with disabilities, including parenting counselling and incorporating the preferences of people with disabilities into family care. These findings add nuances to the current understanding of the relationship between ethics of care and Confucian ethics (Wada 2014; Yuan 2002). We argue that they both exist in Chinese families. Reflecting on the cumulative impact of Confucian ethics on family care over time, Chinese families expect an ideal family care, and the expectation aligns with ethics of care.

The implication of the findings for culturally responsive disability policy is that ethics of care could serve as a goal or benchmark for policy development to support Chinese families of people with disabilities. Accessible and quality disability support resources that are distributed through policies can supplement family care and mitigate the tension between Chinese culture and ethics of care. The complementarity between policy and culture differs from the previous research which tends to take a dual focus by discussing whether policy can facilitate acculturation (Hsueh, Hu, and Clarke-Ekong 2008; Hwang et al. 2020). The complementarity also reinforces that overemphasising cultural difference risks objectifying people through stereotypes of culture, religion, and tradition (Chattoo and Atkin 2012; Fang, Fisher, and Li 2021). With further research, this relationship between policy and culture might be universally applicable to all families regardless of their cultural backgrounds.

Limitations to this study were that the samples only had one father out of 15 families in Taipei and three out of 10 in Sydney. The Sydney sample only included new migrant families born outside Australia. The experiences of Chinese families who were born in Australia might be different. This study only invited family carers. Future research could provide a new perspective by interviewing young people with disabilities.

Conclusion

This study compared the family care of children and young people with developmental disabilities from Chinese backgrounds in Taipei and Sydney. The findings of the study empirically confirm the applicability of ethics of care to culturally responsive disability policy for Chinese families. Regardless of the disability policy contexts, the families in both cities shared a similar expectation of ideal long-term family care, and the expectation aligns with ethics of care. This indicates that disability policy can supplement Chinese culture to ensure ethics of care by strengthening the positive aspects of cultural values and alleviating the negative ones. The implication of the findings for culturally responsive disability policy is to develop disability policies in accordance with ethics of care.

Ethics approvals

UNSW Sydney (HC190036), National Taipei University (201910ES020).

Acknowledgements

Much appreciation goes to the research participants who are the core of this study.

Disclosure statement

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Data availability statement

Research data are not shared.

Additional information

Funding

This work was supported by the Ministry of Science and Technology, Taiwan; Special Research Funding, National Taipei University; Inbound International Doctoral Practicum Exchange Funding, University of New South Wales.

Notes on contributors

Qian Fang

Qian Fang is a lecturer at the UniSA Justice and Society, University of South Australia. She received her PhD in Social Policy from the University of New South Wales. Qian’s research focuses on culturally responsive social policy and practice. Her research topics include culturally responsive disability support and policy in Australia, social support for people from culturally diverse backgrounds, and international Chinese community comparative research.

Heng-Hao Chang

Heng-Hao Chang is a professor at the Department of Sociology, National Taipei University. He received his PhD in Sociology from University of Hawaii, Manoa. His research interests include disability rights movement, representation of disabilities, and inclusive education for disabled people in Taiwan. He currently serves on the editorial board for the International Journal of Disability and Social Justice.

Karen R. Fisher

Karen R. Fisher is a professor at the Social Policy Research Centre, University of New South Wales. Her research interests are the organisation of social services in Australia and China; disability and mental health policy; inclusive research and evaluation; and social policy process. Karen applies mixed methodology and adopts inclusive research methods with people with disability, families, policy officials and services providers.

Ruixin Dong

Ruixin Dong was a research assistant at the Department of Sociology, National Taipei University. She participated in the data collection in Taipei, literature review and data analysis in this research.

Xiaoran Wang

Xiaoran Wang is a lecturer at the Faculty of Humanities and Social Sciences, Beijing University of Technology. She obtained her PhD at the Graduate School of Social Service, Fordham University. Her research areas include Early Childhood Care and Education (ECCE), family support for children with special needs, and help-seeking experiences.