As well as being an emotional issue for many people, care is highly political. The NZ Carers Alliance was formed in 2004 to lobby for a national Carers’ Strategy, which was launched in 2008. Its objectives are to provide information and training, enhance financial and respite-care opportunities, and investigate ways of making workplaces more responsive to the needs and skills of unpaid carers.
There are a number of ongoing issues for carers and those receiving care.
In December 2010 the High Court agreed with the Human Rights Tribunal that parents caring for disabled adult children had as much right to be paid as non-family carers. The case followed a complaint by nine families caring for disabled adults that the Ministry of Health's payment policy was discriminatory. The court decision had wide implications for others caring for family members.
Inequitable support services
Major cities have more support services for people requiring and providing care than small towns and country areas. This inequity is difficult to overcome.
The Carers Alliance believes that the subsidy for families with health and disability needs is inflexible and is not available on an equal basis to all.
It has been claimed that people who have become physically disabled as the result of an accident (and who are therefore covered by ACC) have had better assistance than those disabled from birth or as the result of illness.
Residential care concerns
Some people are concerned about the lack of appropriate residential facilities for some groups. For example, some severely physically disabled people aged under 65 are still cared for in rest homes. More shared-living units specially designed for people with physical disabilities are being built.
Between 2008 and 2010 the number of complaints about rest homes to the Health and Disability Commissioner increased significantly. Many received intensive media coverage, such as the case of a ‘filthy’ Palmerston North rest home that neglected its residents. Among them was a 103-year-old woman suffering from bedsores, who was tied to her bed, allegedly to help her recover from an injured knee.
Regulation of standards of residential care is contentious. It has been claimed that the general standards for rest-home care, drawn up in 2008, are insufficiently rigorous and poorly monitored. These standards were reviewed in 2017 after complaints from family members about the care received by their frail parents.
Paid home caregivers and rest-home workers look after vulnerable, disabled and sometimes difficult people, but are often unskilled and receive low wages. Consumer New Zealand stated in 2017 that problems in service delivery were mainly due to understaffing and training issues in rest-home facilities.
The ageing of the population as the ‘baby boom’ generation (people born between 1946 and 1973) turns 65, and the subsequent increase in numbers of elderly people with high levels of physical dependency, may result in a shortage of rest homes and dementia units, as well as supported-living options such as retirement villages – and the staff to run them.
Community care criticisms
Community care has not worked for everyone. Following de-institutionalisation, many former residents of mental and psychopaedic hospitals rehoused in group homes experienced a much better quality of life, and their skills, health and behaviour improved. Some, however, particularly those with high needs, experienced difficulties in coping. A few traditional-style institutions were re-established in the 2000s as a result.
One of the attractions of community care for the government was that it was much less expensive than institutional care. However, the introduction of community care coincided with the contraction of the welfare state from the 1980s. Although the range of services available expanded, the organisations set up to provide them received less government funding. This remains a problem.
Who will care?
The move to community care and ageing in place gives whānau/families prime responsibility for the care of vulnerable older and younger people, many of whom require round-the-clock support. As families become smaller and more dispersed, their potential to provide such care is reduced. Women, traditionally the caregivers, are increasingly in the paid workforce. There is likely to be more demand for options such as day-care, shared-living, sheltered housing and professional home-care services.
There is also a need to integrate how care is provided by a range of people and organisations – whānau/families, voluntary organisations, district health boards, city councils, regional authorities and central government. Different combinations of care from different sources will be required to meet the varied needs of individuals.