Here's a thoughtful related piece Merryn Gott (end of life care expert at Auckland Uni school of nursing) has written for Newsroom, focussed on palliative care. Although her interest is end of life, many of her findings are equally applicable to family carers for people with complex disability or health needs. The link at the end is also worth reading.
Some surprise progress.
Prior to 2012 the Ministry of Health had a long-standing policy or practice of preventing resident family members of people with disabilities from being paid for care work. But recent court rulings say that law was discriminatory and relatives should have been paid.
The lawyer Simon Judd who represented the group, known as the King claimants, said the Ministry of Health had now accepted those findings apply to his clients. That meant the trial, which was set down for three months, was now expected to take six weeks and would focus on remedies.