Pun Chung Suet-hing is honouring her life-long commitment to love her husband in sickness and in health, in sadness and in joy. But to many people, the pledges behind the sacred marriage vow that she made 22 years ago would now be too difficult to fulfil. Every day for four years, the 48-year-old wife has been taking care of her quadriplegic husband by his bedside, almost around the clock. From cooking three meals a day to carrying him for showers, the toilet and for bed, Mrs Pun does it all by herself. Her husband, Pun Ip-chiu, 55, has been diagnosed with a rare degenerative spinal disease that causes his disabilities. The wife admits that her life over the past four years has worn her out, and that she feels helpless. The entire area of her daily activities is their 400 sq ft public flat in Tuen Mun. Less than a handful of times a year, Mrs Pun can enjoy a few hours away from her husband's side and join her friends for a gathering - but only when she can persuade a relative to look after her husband in their home. The family cannot afford to hire a domestic helper to share her responsibilities. However, they belong to perhaps thousands of typical borderline cases who have not passed the means test for Comprehensive Social Security Assistance (CSSA). The asset limit defined by the CSSA for a family of three, as with Mrs Pun's case - including one disabled person and two healthy people - is $63,000. Mrs Pun's husband was once allocated a place in a day-care centre, which is about 20 minutes away by rail. But the couple gave up the service due to problems involved in transporting him. 'The Rehabus does not meet the schedule,' she says. 'And it is even more difficult for me to carry my husband around to take the public transport every day. So we decided the best option is to keep him at home.' The hardship endured by the couple is by no means unique, according to a survey carried out by the 1 Step Association, an organisation to provide one-stop services for families of severely disabled people. The 1 Step Association estimates that the number of borderline cases like Mrs Pun and her family who are denied assistance in Hong Kong could number in the thousands. In 36 such cases interviewed for a mini-survey conducted in June last year, 44 per cent of the carers had to take care of their severely disabled family members single-handedly and 36 per cent were forced to quit their jobs to become full-time carers. The survey also indicated that the carers spent roughly half of their time taking care of the patients and another quarter of their day doing housework. The only time spared for themselves in their routines was eight hours of sleep. One-third of the families are on CSSA and 46 per cent said they sometimes had to resort to friends or relatives to help make ends meet. Before their family members had fallen ill, 97.3 per cent of these families had jobs and income, with only 2.7 per cent relying on government assistance. Leung Chor-yan, the chairman of 1 Step Association, criticised the government for failing to map out a comprehensive policy to help families with severely disabled members. Mr Leung said existing assistance targeted hospital services and financial help for the disabled person, but there was no system of support for the whole family, especially the carers. He said that even though some welfare services were available, the services were either not known to the families or were not properly co-ordinated to serve their needs. 'Once the patients are discharged from hospital, the family members have to take up the responsibility immediately,' Mr Leung said. 'However, many of them do not even have the basic skills for taking care of these patients - things like how to feed them, or how to take them to bed without injuring themselves or the patients. 'Hospital staff are so busy with their daily operations that they rarely take the initiative in providing information to these families about follow-up services. So it heavily depends on the families themselves finding out about services from their own social network - from friends or relatives who may also have severely disabled people in their families.' Mr Leung warned that patients and carers suffered equally because of this lack of support. Legislator Fernando Cheung Chiu-hung, who represents the welfare sector, said Hong Kong was considered 'quite backward' when it came to assistance for families with severely disabled patients. Dr Cheung said that in the US and some European countries, families were served by case managers - social workers who connected the families to organisations and departments for follow-up services. He said that it would be in the best interests of the community and carers if the government could provide better day care or after-care services for disabled people, to allow their carers to return to the labour market or enjoy a normal social life. 'But in Hong Kong, families do not receive much support from the government besides financial subsidies for the patients,' Dr Cheung said. 'Bear in mind that those carers are doing an unpaid job taking care of the patients, but their hard labour is not valued by the government.' The Social Welfare Department said that current welfare arrangements did not provide subsidies for family members who had quit their jobs to become full-time carers at home. Only tetraplegic patients who are on CSSA can apply for a Care and Attention Allowance of up to $4,296 per month, to cover the cost of hiring a carer at home. But as with the Pun family, the benefit does not cover those who are not on CSSA. Dr Cheung said that the existing system only encouraged more families to fall into CSSA. Meanwhile, Mrs Pun's only chance to slip away from her flat is to do her daily grocery shopping in the wet market, or to collect cash from the bank once a month. Both places are just a few minutes' walk from their flat, ensuring that she can finish her grocery shopping and return home within 20 minutes. 'I even have to turn down annual gatherings with my very good friends because no one can take care of my husband at home,' Mrs Pun said. 'I am sure no one is really willing to stay beside a quadriplegic person for hours, except very close family members, or someone who is paid to do the job. 'And besides, they would not know how to take care of him, as my husband also developed dysphonia a year ago. He can't express himself to other people. 'But we have been married for more than 22 years - that makes it easier for me to read his mind by looking at his very minor gestures, such as shaking his head or blinking his eyes.' To look after her ailing husband, Mrs Pun has been forced to leave her job as a housekeeper and also her volunteer work for a welfare organisation. The family of three, including her 19-year-old son, live a frugal life on Mr Pun's pension of $3,300 and the government disability allowances of $2,200. Unlike the CSSA, disability allowances do not require a means test and, Mrs Pun says, do not have the social stigma of CSSA. Fortunately for the Puns, the family was recently granted a charity fund of $10,000 by the Yan Chai Tetraplegic Fund. The family is reimbursed every three months to pay for medical supplies, including adult diapers. The Health, Welfare and Food Bureau, which oversees current welfare policies, does not agree with criticisms that families like the Puns are being ignored. The bureau said that paraplegic patients and their carers could receive emotional support and counselling through medical social workers or social workers with the Integrated Services Centre or Family Services Centre of the Social Welfare Department. If necessary, they could be referred to a clinical psychologist. 'Prior to discharge from hospital, a multi-disciplinary team in the hospital will assess the rehabilitation needs of individual patients, to prepare them for discharge,' a bureau spokesman said. 'Physiotherapists and occupational therapists will conduct carer training to enable the carer to acquire the knowledge essential for caring for the patient at home. 'The Community Rehabilitation Network under the Hong Kong Society for Rehabilitation provides services and programmes to spinal cord injury patients, including paraplegic patients, and their carers, helping them to acquire basic rehabilitation knowledge and self-help skills so as to increase their abilities and confidence in facing the disabilities.'