Prepared by the Alliance in association with Alzheimers NZ and IHC, the report documents “the significant problems” facing the respite system.
Entitled Respite In New Zealand: We must do better, it outlines eight steps the Alliance would like government to take, including three priority areas.
In the 2013 census, 430,000 New Zealanders, 10 percent of the population, identified as carers, looking after approximately 1.1 million New Zealanders living with disabilities. It’s estimated these carers provide between seven and $17 billion dollars of unpaid care annually.
“Respite is one critical area where we can support carers. However, services are currently not meeting people’s needs, not universally available and not adequate,” the report says.
“This situation can’t be allowed to continue,” says Alliance co-chair and Alzheimers NZ chief executive, Catherine Hall.
“The statistics are extremely worrying now, but with an aging population our need for carers will grow exponentially.
“I dread to think how our society will cope if the government doesn’t heed the warnings in this report and act now to fix what is a badly broken respite care system.”
The report urges government to take immediate action in three priority areas:
- Have all DHBs review respite services and develop a plan to recommission them, with a priority on dementia.
- Develop a respite quality and outcomes framework.
- Establish a cross-sector stewardship and leadership group, the primary role of which is to ensure policy coherence across government.
“None of this work needs to be complex,” says Hall. “It just needs to happen.”
Other actions the Alliance says government must take include:
- Rolling out the Ministry of Health’s I Choose model, which is set to replace the Carer Support Subsidy.
- Keeping the needs of carers and the people they care for as the focus on policy.
- Creating and implementing a respite innovation fund to support providers to prototype new respite options as part of recommissioning services.
- Monitoring and reviewing providers against a quality and outcomes framework.
- Having the cross-sector stewardship group lead the development of investment approach thinking for an effective and sustainable carers system.
Sue Collier is 72 (“feeling like 92”) and has been caring for her husband Barry (81) for nine years. He has a number of health complications, “partly from weight, partly from ageing” including immobility and a chronic skin condition that requires daily care.
Like many carers, Collier has developed health issues of her own that have required several surgeries and treatments. Seven years ago, following major surgical complications, doctors worried she might die.
A paid carer comes in to help Collier with her husband twice a day. The couple is also eligible for 35 days per year of respite care to the value of approximately $100 per day.
Unfortunately, this isn’t enough to allow Collier a decent break; the cost of putting her husband into a rest home, for example, would cost around $1400 per week, twice the amount they receive.
“Right now I’m just tired,” she says, struggling to recall the last time she had a holiday. “I’m not even sure what kind of holiday I’d want at my age. I’d probably want to sit on a beach somewhere or with my feet in a stream.”
“This level of care changes relationships,” the report says. “It causes stress, loneliness, lost income, and lost sleep.
“At times, carers are unable to focus on themselves and suffer the physical, mental, and social consequences. Carers in these circumstances need respite.”
“We love our people that we’re caring for,” Collier says of the carers she has spoken to, “but they become, in a way, a drain on us. We’re giving out, giving out, the whole time.
“We’re getting tired and the younger people aren’t always coming forward. They’re busy, they’re working, they have children to look after. No one is available.”
Collier believes an improved respite care system is vital, including the provision of respite facilities for carers.
“Carers need to be cared for. For me, it would give me a chance to be me again.”