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Leigh grandmother Sue Nelson is desperate to find a long-term supported living option that will secure a good life for her 24-year-old disabled granddaughter, Zaria.
Sue says she has grown increasingly angry and concerned at the lack of provision once disabled people leave school and become too old for other support options.
The 72-year-old says this is definitely a problem in Rodney and she hopes the community can help to find a solution.
Sue, who has been Zaria’s full time carer since 2020, says things such as respite care and special needs classes are hard to find once disabled people reach the age of 18 to 21 and everything falls back on the parent or guardian.
Zaria has cerebral palsy, and is non-verbal. Sue works hard to enrich her daily life and says her granddaughter, who communicates via methods such as Yes/No cards, responds well to being out and about in the community, and enjoys music.
“I’m taking her everywhere at the moment, to get her with people of her own age,” Sue says. “She loves going out and being social – including seeing her friends at Mahurangi College’s special needs classes.
It is so important for her not to be isolated and to have some independence.”
Sue’s biggest worry is her granddaughter’s future.
“I am doing all I can, but Zaria needs to live with people similar to her. At my age I want to know that if I die or become unable to care for her, she is in a good place – a flatting-type situation or a home with support. Kainga Ora is doing what it can, but has no answers long-term. There is no future planning.”
Whaikaha – Ministry of Disabled People is currently working through a refresh of the NZ Disability Strategy, which Disability Support Services (DSS) associate deputy chief executive Anne Shaw says may include work on housing.
She says access to housing is an issue regularly raised by disabled people.
“We provide a range of supports including funding to help disabled people to remain in their homes and communities,” she says.
“This includes household management, personal care and individualised funding, which can be used to purchase approved services. However, we do not directly provide social or supported housing.
“Some people and their families approach non-government organisations or private landlords to identify available housing that they can rent as a group using their wages or benefits to fund this private arrangement, and sharing supports provided by DSS.”
Sue says she would like to see a group of young disabled people in the Warkworth area able to live and grow old together, with support.
She adds there are organisations, including various trusts, that have the expertise to manage and staff homes like this, and that they would like to do so in Rodney, but lack a suitable house.
“The best scenario would be to buy a house and I am hoping the community can help,” Sue says.
“Perhaps local charitable trusts and organisations such as Lions could help us raise $400,000 to $500,000 for a deposit for a house? Or maybe a construction company might be able to donate a property?”
Sue is meeting MP Chris Penk this week to discuss the issue.
“These families don’t know what will hit them when their disabled young people have to leave school,” she says.
“The lack of future proofing is simply not good enough.”
If anyone is able to assist, Sue can be contacted via the Mahurangi Matters office.
