Yueh-Ching Chou* & Toshiko Nakano** *Professor, Institute of Health & Welfare Policy, National Yang-Ming Univer

Carers and Work-Care ReconciliationInternational conference13thAugust 2013Parent-carers in Taiwan and Japan: lifelong caring responsibilities within a familistic welfare system Yueh-Ching Chou* & Toshiko Nakano** *Professor, Institute of Health & Welfare Policy, National Yang-Ming University, Taipei, Taiwan; choucyc@ym.edu.tw **Professor, Faculty of Sociology and Social Work, Meiji Gakuin University, Tokyo/Yokohama, Japan; nakanoto@soc.meijigakuin.ac.jp

Note: This article is the chapter 8 of thebook TeppoKröger and Sue Yeandle (Eds.) (2013) Combining paid work and family care: Policies and experiences in international perspective, Bristol: Policy Press.

Introduction Family care, family responsibility in East Asia caring for children, frail older people and people with disabilities Japan and Taiwan currently extremely low birth rates (Japan, 1.21 vs Taiwan, 0.89, 2011 ) Long-term care insurance (LTCI) schemes Japan LTCI scheme in 2000 vs Taiwan proposed in 2016 lifelong parent-carers of disabled children, particularly mothers juggling care and work is a novel topic in all East Asian countries E.g. Taiwan & Japan

Family care responsibilities in Taiwan and Japan • Civil Code in Taiwan & Japan • Taiwan’s Civil Code places responsibility for the care of people with disabilities (children and adults) on lineal family members: parents, siblings and children. • Japanese Civil Code states that lineal kin (blood relatives and siblings) have a duty to support each other, which includes caring for people with disabilities. • People with disabilities (as shown in Table 8.1) • Taiwan: 93% of disabled people of all ages lived with their families; 7% used residential services (7% people with ID); 11% cared by live-in migrant care workers. • Japan: 93% of disabled people of all ages lived with their families/living in the community independently; 7% used residential services (23% people with ID)

Table 8.1 Number, living arrangements and service use of people with disabilities in Taiwan and Japan Note: ID means intellectual disabilities. Sources: On Taiwan, Chou et al, 2007, 2010; DSMI, 2007, 2011. On Japan:Cabinet Office, 2010; MHLW,2005, 2006, 2010, 2011; JILPT, 2011.

Taiwan & Japan welfare benefits for disabled children • Both are allocated through a process of registration and diagnosis • Taiwan: a single law covers people with physical and mental disabilities • Japan: four different laws govern arrangements for people with physical, mental, intellectual and developmental disabilities and a comprehensive support law • Caring for disabled children is treated as a family responsibility in both Taiwan and Japan • E.g., Social services available for disabled children– • a selectivist ideology, means-testing based on total family income, all income of lineal relatives • services and cash benefits based on both the degree of disability and family income; co-payments when using services

Social services available for disabled children in Taiwan & Japan Taiwan • Local authorities (LAs) provide a monthly family subsidy and a range of social services (e.g., respite care, day care, day services/vocational/educational services, home care, residential services) • Claim to have family subsidy or use social services (families who claim this financial support thereby become ineligible to use social services) • family subsidy--families with a disabled family member who lives at home & low-income Japan • 2 welfare benefits for families caring at home for a disabled child (<20) from state via LAs: • Special Child Rearing Allowance-- families caring for disabled children • Welfare Allowance for Children with Severe Disabilities-- if the child needs round-the-clock care • after school day care -‘life enhancement’ projects from 2012 • Independence Support (nursing care at home, specialist medical care, equipment) for disabled children who live at home

Family Care Leaves Schemes

How do mothers reconcile paid work with caring for a disabled child? 2 examples from each country, Japan & Taiwan Mrs Takahashi- • She is 48 years old and a care manager working full-time in a community care centre for older persons. She has worked there for over 15 years, ever since her husband became ill. Five years ago she decided to improve her career and moved from a part-time job to full-time employment. • Mrs Takahashi lives with her son, Ryota, aged 22, who has a mild ID, another son, her husband and her mother-in-law. Ryota has a full-time job in a small company where he cleans the offices and sometimes helps with the company’s events and entertainment activities. He does not use any care services. All his life, Mrs Takahashi has been Ryota’s primary carer, offering him supportive surroundings. • She has established an informal carers’ network for Ryota using voluntary support in their community to enabled him making friends in the community. • Ryota attended a class for children with additional needs in a mainstream school. Because he was frequently in poor health, I regularly had to take him to appointments with doctors. Fortunately, I worked in a job with a flexi-time system. I was also fortunate to have various supportive social networks, including my colleagues…Of course, it is probably true that I will never in my life escape from caring for my son as a parent.

Mrs Sasaki - • A self-employed, freelance editor and writer carrying out contract work for publishers. Aged 40, she lives with her husband and two sons. Her working hours depend on the schedules offered by the publishers. Her husband, also a freelance writer. One of their sons, Taro, aged 8, has severe intellectual and physical disabilities through cerebral palsy and attends a school for children with additional needs. • Taro has various kinds of social support and services in his daily life-- afterschool care, respite care and supported transport. Occasionally he is also hospitalised for short periods. The family also uses private care services (at ¥800-1000/€7.50-9.50 per hour). This helps Mrs Sasaki to be flexible, to respond to Taro’s care needs and to reconcile her work and caring roles: • …working is the reason for being who I am to me. Keeping Taro’s daily life safe and secure is important …. We have supported him towards independent living in the future, and we have managed all the risks in our lives ourselves….sharing information, keeping in touch with society, and having standing in the community are the best ways of developing the supportive network for my son.

MrsLin- • She was working as a government official in the income tax bureau and her husband held a managerial position in a private company. She was also the chair of a parents’ organisation. Their only daughter, Jen, has moderate intellectual disabilities (ID). Jen is 23 years old and regularly attends a day care service. • She displayed a very positive attitude towards her caring work, referring to herself as ‘a mother who cannot be substituted’.She mentioned she was ‘lucky’ to have plenty of resources available through her social networks: • My mother takes a great interest in my daughter and my sister looks after my daughter a lot. That’s why I can continue my work…Earlier, the principal of the kindergarten was very kind to us; now the staff at the day care centre are very helpful, too. If I am unable to fetch my daughter, I just make a phone call and I have lots of support - lots of people who are able to help me, including my colleagues, my friends and my sister. My colleague’s brother-in-law is a physician and he also has become a good friend of my family.

MrsKou- • She is 54 year old self-employed hairdresser who works from home. Her husband was unemployed. • Their daughter, Yen, is 27 years old and has ‘profound’ ID. Each week, she uses a respite care service for two hours to care for Yen. • Mrs Kou works almost every day from morning until late in the evening sometimes, depending on her customers’ needs, her work continues until 11pm. She is Yen’s primary carer and Yen usually spends her time in the living room where Mrs Kou works. • Combining her work and care in this way means Mrs Kou is constantly busy. She has some problems with her leg (varicose veins) because she is standing for many hours each day while she works: • ‘Last night I did not go to bed until 3am. Usually I do not sleep well because I have to get up every two or three hours to check if Yen is OK. I do not have time to rest’. • In the past, Yen attended a special school and received special home education provided by the LA’s education service. The family no longer uses the service as Mrs Kou became very dissatisfied with her interaction with the service workers: • …The teachers were not friendly, …I have never felt supported by the government…

Experiences of Taiwanese mothers (Mrs Lin & Mrs Kou): variations in access to support • Two Taiwanese mothers illustrate how parent-carers’ social and demographic circumstances can affect their ability to reconcile work and care satisfactorily. • These women’s experiences of motherhood and of caring for a disabled child were similar. • Neither complained that their husbands did not make an equal contribution to the care-giving and both saw taking care of their disabled child as their own responsibility because they were the child’s mothers. • Two stories show informal support is as critical for Taiwanese mother-carers as formal support. • The availability and use of formal support depends on the LA where the family lives and is also affected by the mother’s social status. • ‘Residual’ welfare systems - where social policy relies on family solidarity as the main source of care - deepen social inequality, as has been observed elsewhere (see Knijn and Komter, 2004).

Experiences of Japanese mothers (Mrs Takahashi & Mrs Sasaki): flexible working conditions and use of private services . The factors seem to be important in understanding how these two Japanese mothers manage her dual roles of work and care: (1) the flexible working time system in her occupation; (2) having a workplace which is near her home; (3) with positive attitudes towards children with disabilities living in the community; and (4) Using public and private services. • Combining work and care for these two Japanese mothers: • how to maximise the independence of each family member: the father, the mother, the child with disabilities, the other children. • the family needs knowledge and ability to access appropriate social services.

The intertwining of policy, culture and society in Taiwan and Japan • Taiwan • Most service users are parent-carers who (see, also, Chou et al, 2008): (1) have a higher level of education (like Mrs Lin); (2) live in urban areas; and (3) are involved in voluntary associations (as Mrs Lin is). • helping mothers of disabled children to participate in the labour force has not (yet) become an advocacy issue for women’s groups in Taiwan • no specific welfare or employment policies in place • parent-carers have both lower rates of employment and a poorer quality of life than other citizens of working age (Chou et al, 2007, especially for mothers from low socio-economic backgrounds (Chou et al, 2010). • Since 1992, families with a relative needing regular assistance in daily life have been eligible to hire a live-in migrant care worker • Having a live-in migrant care worker to share the work of caring for a disabled child is possible only for well-off families.

Japan • child-rearing arrangements are influenced by societal values; although new family support measures have been introduced • parental care is deeply embedded that it is very hard for parents bringing up a disabled child to feel free of social norms • ‘work-life balance’ policy initiated in 2009: • Paid care leave could be auseful option for mothers of disabled children, combining work and care

Discussion: Taiwan vs Japan • Consistent findings from the four mothers’ stories in Taiwan and Japan • Regardless of social status and background and whether or not they are in paid work, mothers are still almost always the primary carers of the disabled child • Care in these two countries remains a private responsibility and a family obligation • Financial support and services have developed, but most parent-carers have to make co-payments when using disability services • Familial ideas - filial piety, patriarchal authority, strict gender role separation, female subordination, and a fear of bringing shame on the family - remain strong values in East Asia, especially in Taiwan, low level social security and social services provided • Differences: • Japan: care responsibilities are moving away from the family and shifting towards the state • Taiwan: informal support is the only crucial strategy for parents and mothers with care responsibilities; families still cope with having limited formal social support

Recommendations to policymakers Japan measures: developing positive attitudes towards parent-carers in the workplace, e.g., flexibility in the workplace supporting children’s independent lives in the community, with formal or informal resources available to them and their families providing a special subsidy for children with disabilities to assure their financial security; thus parent-carers can choose a working style which suits their caring circumstances Taiwan measures: Taiwan’s planned LTCI scheme meets not only the care needs of older and disabled people but also parent-carers’ right to work, especially the mothers supporting these families’ economic and care-giving needs Paid parental care leave should be entitled Both countries: gender equality needs to be concerned women’s roles increasingly combine both paid and domestic work in two countries Japan, although, has moved towards universal breadwinner status in terms of paternal and maternal labour force participation, little evidence of movement toward universal care-giving. policies designed to incentivise men/fathers to share care work to improve gender equality to make paid work and unpaid care equally valued in the society

Yueh-Ching Chou* & Toshiko Nakano** *Professor, Institute of Health & Welfare Policy, National Yang-Ming Univer