Carers speak up about what needs to change

In a series of nationwide meetings, family carers are being encouraged to talk about the pressures of supporting disabled family members and what would make a difference to them.

Carers NZ Chief Executive Laurie Hilsgen says there are more than one million family carers in New Zealand whose work is largely hidden.

“Family-whānau and aiga carers have had few opportunities to connect and share since the COVID-19 pandemic. Service disruptions and worker shortages have placed more pressure on families to step up and they have provided more care and support than usual since 2020,” she says.

“We are aware through our research that the wellbeing of family carers is the lowest Carers NZ has seen it in 25 years. More than 70 percent says they are isolated and lonely, more than two-thirds are experiencing anxiety and depression and there is a pervasive sense of hopelessness emerging in our 0800 helpline dealings with carers in the disability space.

“We aim to listen, identify regional issues, and help to resolve these – and also to provide information that ensures families are aware of available support and how to access it.”

Aside from the hui, Carers NZ will be commissioning Synergia to rerun its 2022 State of Caring research. The first State of Caring report was based on survey feedback from 1650 carers of all ages; the report made 12 recommendations for increased support, but Laurie says carers are still waiting for real progress in areas such as improved financial recognition and respite.

She is hopeful that Disability Issues Minister Penny Simmonds, who advocated for carers as National Party spokesperson before the election, will support change. “We look forward to working with her and others in the new government to ensure family carers are recognised and protected.”

Laurie says the purpose of the hui around New Zealand is to listen to family carers of all ethnicities and ages, rural and urban, to get a sense of their wellbeing, their concerns and to hear their calls to action for better support. It is also an opportunity to share information and to clear up confusion surrounding what support is available from government agencies such as Whaikaha – Ministry of Disabled People.

“In terms of Whaikaha, we think it needs to listen more to family-whānau. Whaikaha needs to provide clearer guidelines about how flexible funding can be used and also to promote this help, including options about how family carers can be paid. People aren’t always aware of what is allowed or available.”

Laurie is expecting the hui to reinforce what is already known – that carers struggle to take breaks from their caring role, they need better access to good quality and reliable services, and more attention needs to be paid to carers’ own wellbeing.

The Kōreroero – Community Conversations hui will run until the end of 2024 to encourage carers to come out and say what’s on their minds. The hui are being funded by Carers NZ and the IHC Foundation.

Laurie says initial carer gatherings have been held in Southland and Napier. “We have got a lot more to go and some will be in partnership with other organisations, including IHC.” Meetings will target communities that other consultations don’t reach.

“There are quite a few places that don’t get included in government consultations like the West Coast, South Canterbury and other rural areas.”

Between February and April, hui will be held in Northland, Waikato, Canterbury, South Canterbury and Wellington. Meetings will be held in other regions through the year. For more information about the Kōreroero – Community Conversations, email centre@carers.net.nz

Caption: The wellbeing of family carers is the lowest seen by Carers NZ in 25 years. Stock image.