It’s finally here. It has finally come to fruition. It is opening next week. The phrase “Risk and Reward” is an earworm looping around in my head. We started on the 30th of January 2023 when we conducted an online survey the of the Tai Tokerau Disability community prompted by anecdotal concerns about respite options in Northland.
The survey indicated a severe shortage of respite options for disabled people in Northland. The majority of respondents were from whanau who had a disabled family member living with them. While 73% stated they were entitled to respite care, only 58% of the respondents said they actually used respite care which suggested issues with availability and /or suitability.
Then in March 2024, the then Minister of Disability Issues, Penny Simmons announced restrictions in flexible funding, on how disabled people and families on how they could spend their Individualised Funding allocation. One of the outcomes was that families could no longer use their Respite Allocation on staying in a motel or hotel or alternative accommodation while their disabled family member stayed at their family house and was looked after by a caregiver. This made a tough situation worse. Options to give family members a break from being carers were even more diminished.
Last year we formed a Tai Tokerau Enabling Good Lives (EGL) Leadership Group using a model of Community Led Development. This approach supports communities to come up with solutions they are having issues with. The EGL Leadership Group decided that a priority was to come up with a collaborative solution to providing respite options. Surprise, surprise, a significant issue the group identified, was that while families have enough money in their Individualised Funding allocation to hire caregivers to care for their disabled whanau member, there was no suitable physical place for their disabled whanau member to go.
Then we remembered our friends at the Accessible Housing Trust. The Whangarei Accessible Housing Trust (WAHT) was established in 2006 as a charitable trust. Their mission is to “To provide accessible, affordable, sustainable, quality housing for disabled people and whanau, in partnership with disabled people and other key stakeholders from the community, public and private sectors”.
After much discussion the Trust offered Tiaho the opportunity to rent one of their houses which is accessible and in central Whangarei for a six-month trial to see if there was enough demand for such a facility to continue it further. An agreement has been entered into that Tiaho Trust will be responsible for paying the WAHT the weekly rental and coordinating the bookings of family members who want to use the house to, provide respite care for their disabled family member. The house is fully furnished with equipment such as a hoist, shower chair and adjustable bed. It is a three bedroom house so if there are friends who would like to have respite together this can be done or of course they could have the house to themselves.
I asked the Chair of the WHAT, Susanne Scanlen for a quote, she said “The Trustees of the Whangarei Accessible Housing Trust are delighted that Tiaho Trust approached us to trial a new and innovative respite service for young disabled people in the Northland area. Options for respite care for young people living with disabilities and their families, has been inadequate and severely overlooked as far as funding and availability of facilities for far too long. This is a new venture for us all and we hope it will be a roaring success for both the recipients and their whanau. If this new program is successful in both its design and purpose in assisting those in the disabled community we seek to accommodate, who knows what possibilities it could present to expand the service further in the future. We wish Tiaho Trust and its guests using this service all the best for a successful trial
There is a daily cost for this facility, but families are required to provide their own supports or carers. This could be paid for through various sources, such as a person’s Individual Funding Allocations (IF), Very High Needs funding (VHN), or privately. If you are interested in this opportunity and don’t have Individualised Funding, please discuss this with the NASC at NorthAble.
I am excited about providing this innovative and collaborative option for families in Northland. Finally providing another option for families will be very rewarding. However, I am somewhat nervous. I’m nervous that while families have told us there is a real need for this, they might not use it, leaving us with covering the rental which as you all know would be a very costly endeavour. “Risk and Reward”. Sometimes you just have faith in the concept of “build it and they will come.”
Jonny Wilkinson is the CEO of Tiaho Trust – Disability A Matter of Perception, a Whangarei based disability advocacy organisation.