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Regional | Māori

Streaming services cut for whānau caring for the disabled

“We aren’t able to use the funding in the way that best suits us, that best suits the child or the person that has the disability.”

Something as small as a streaming subscription has been cut from services for those who care for people with disabilities.

A Pāpāmoa mother is calling out the government’s recent changes to disability funding, following her claim for streaming service Disney Plus being denied.

Misty Kimura has a 16-year-old daughter, KhyNoa Kimura-Hayes, who suffers from Trisomy 9 mosaic syndrome. People with this rare condition have an extra chromosome 9 (known as a trisomy) in some of the cells in their body.

It’s so rare that Khy-Noa is thought to be the only Māori in the world known to be living with the condition.

In March, the Disability Ministry (Whaikaha) announced changes limiting what funding could be spent on, with carers no longer being able to buy items to help with respite.

Kimura says it’s restrictive and doesn’t allow for whānau who have different needs.

“It’s causing a lot of anxiety and stress for carers and also for those who are living with a disability.”

“We aren’t able to use the funding in the way that best suits us, that best suits the child or the person that has the disability.”

Whaikaha has a range of funding options available to whānau that care for the disabled, including Individualised Funding, which is a type of person-directed funding that gives disabled people and their family/whānau more choice in how they are supported to live their lives. It comes in the form of home and community support services and respite care.

“That mother may need to go and have a massage because she has to physically lift her child out of bed every day. There may be a mother who never gets her nails done. Because she doesn’t have anybody to look after herself. If it works for them.”

Kimura says while people might think something as small as a Disney Plus subscription is not worth the worry but, for her, it gives her the ability to have Khy Noa nearby in the living room.

“It should be allocated funding. Show how you spend it. Don’t have to spend it all, but make it discretionary so their families and individuals can live life on their own terms.”