This was exacerbated in March 2024 when Whaikaha - Ministry for Disabled People introduced restrictions on the use of flexible funding, changing purchase rules for Individualised Funding.
“Families were no longer able to use their individualised funding allocation to pay to go to a hotel or motel - when a caregiver went into their family house to look after their disabled family member - and give themselves a break.”
A leadership group, Tai Tokerau Enabling Good Lives, also identified the lack of respite options as a key issue for Northland whānau, Wilkinson said.
These groups approached Whangārei Accessible Housing Trust to see if anything could be done and the timing was almost serendipitous, trustee Carolyn Passmore said.
The trust normally rents its accessible houses to people with disabilities on a long-term basis, but a three-bedroom home in Kensington had just become available, she said.
While the trust usually has 100% occupancy of its homes and a waiting list, trustees were also aware of the lack of suitable respite services in Northland.
Passmore, a tetraplegic who uses an electric wheelchair, said at one stage she had to spend three months in hospital due to a lack of suitable options, while some families travel to Auckland for respite care.
Whangārei Accessible Housing Trust chairwoman Susanne Scanlen said it was an exciting opportunity to work with Tiaho to find a solution.
Tiaho will rent the house off Whangārei Accessible Housing Trust in a six-month trial, managing the bookings and providing support.
The three-bedroom, fully accessible home will be hired by whānau for their disabled person to use with a private caregiver, normally someone who already provides some care.
Tikipunga mother Odette Keet is keen to sing the praises of the new service and encourage others to use it.
Her 19-year-old son Jordan Keet-Lee has cerebral palsy, global development delay, visual impairment, severe epilepsy and is quadriplegic.
His high needs mean he needs 24/7 care, tube feeding, a catheter and other special equipment like a hoist lift, wet-area shower and a bed with hospital rails, Keet said.
Finding something that meets all his needs was fantastic, she said, especially as their family home is small.
The whānau have already used the service with Keet-Lee’s regular caregivers, including a few days when Keet had to rush to Auckland for a family emergency.
Respite care not only gives the parents a chance to recharge their batteries, it gives the disabled person a break, she said.
The whānau now hopes to use the service twice a month, and Keet encouraged other families to find out more about their entitlements and how their funding can be used.
“If you don’t become the voice then you’re never going to understand how it works - we’ve learnt to fight,” she said.
Wilkinson also encouraged people to use the innovative service, which he thought would be the first of its kind in the country.
“I’m sure lots of people around the country will be watching this approach.”
Enquiries have come as far afield as Kaitāia and Hokianga, as there is no respite service in the Far North either, he said.
Email respitehouse@tiaho.org.nz or text 021 2022 706 for enquiries or bookings.
Denise Piper is a news reporter for the Northern Advocate, focusing on health and business. She has more than 20 years in journalism and is passionate about covering stories that make a difference.
