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Parents stress over disability funding changes

Parents of disabled children in Wairarapa are stressed about new funding changes, although the Ministry of Disabled People says flexibility in managing funding remains.

A spokesperson for the Wairarapa disabled community, herself the parent of a disabled daughter, estimates hundreds in the region could be impacted by the changes announced on March 18 by Whaikaha Ministry of Disabled People.

Amanda Bleckmann, deputy chief executive commissioning delivery and design at Whaikaha described the funding decision as “difficult”.

“Demand for disability support services and the cost of delivering them is under pressure and increasing year on year. Growing demand has meant we are already forecasting an overspend in this financial year,” she said.

“We acknowledge that news of the changes took the community by surprise and has caused some stress and anxiety. We apologise for that,” she said, acknowledging the importance of carers.

Joanna Scott is the Wairarapa community services coordinator for CCS Disability Action, the biggest disability support and advocacy organisation in New Zealand. She said hundreds of families across the region will probably be affected.

Scott is a solo parent of two daughters, Chloe Scott-Smith [16] and Keira Scott-Smith [14]. Keira is intellectually disabled, and Scott is her primary caregiver. Both girls attend Wairarapa College, with Keira in the supported learning centre.

Scott and fellow caregiver Courtney Naera spoke to The Times-Age about the challenges facing them and their families.

Newly excluded funded items include some costs of respite care for caregivers, self-care services not for the direct benefit of the disabled person, and travel-related costs for disabled people and carers. Pedicures and massages were specifically listed.

Both families base their planning and goals on ‘enabling good lives’ principles, aimed at giving people choice and control.

Scott works part-time 20 hours a week, and Keira goes to an after-school support worker between Monday and Thursday. Funding for this is expected to continue.

“I tried to increase my hours to 30, but it was too much,” she said.

“The biggest fear for me is I might not be able to continue working, which will mean we will all be worse off.”

Scott has been feeling worried.

“The wording is unclear, and it’s confusing,” she said.

“What it does impact is if Keira and a caregiver were to do an activity with a cost involved, we wouldn’t be able to use the funds for the cost.

“It angers me they are not acknowledging the role of caregivers in this funding decision.”

The list of affected items for Keira could include trips with her sister, mileage to attend events, an iPad, and a Netflix subscription.

Scott said Keira’s iPad is a primary form of communication.

“She has an iPad, but now can’t replace it if it gets damaged.”

Scott is concerned about her daughter’s future.

“When we went through Covid and post-Covid and as the flexibility [of funding] came in, it gave our family an opportunity to dream a little bit bigger about what the future might look like for her.

“I want to see her living independently, with support at some point. I want her to have the opportunity to leave home and live with her friends, and to be a part of her community. My concern is that with this it’s going to be harder for those things to happen.

“She’ll have to stay at home, and I’ll be a caregiver for the rest of my life with no support. That’s my biggest fear.

“I’m not saying that’s what is going to come out of this, but that feels like the direction that they’re heading.”

Courtney Naera agreed. She and her husband Charlie have five children. Cassius [nine] has lissencephaly, a condition that puts him at increased risk of learning disabilities, developmental delays, seizures, and muscle spasms.

“We were told he wouldn’t live past the age of two, and there was no cure for his condition,” she said.

“He’s going to be turning 10 this year, and he’s the happiest boy.”

Charlie is the full-time caregiver for Cassius, and Courtney described suggestions he would spend funding on pedicures as “ridiculous”.

The family prefer to look after Cassius themselves, due to his complex needs.

“We have never claimed pedicures and haircuts. My husband is the caregiver. Saying we are using the funding that way is ridiculous,” she said.

Courtney said the family is still able to use the funding to some extent, and Charlie has also received some compensation.

“The biggest issue for us at the moment is the lack of consultation and uncertainty about future funding for family-funded carers,” she said.

“We are wondering if they are going to take that away.”

Courtney said they felt like their choice and control have been taken away.

“It’s sad. It’s sad for the families.”

Bleckman said Whaikaha commissions disability support services for around 45,000 and funds equipment and home and vehicle modifications for approximately 100,000.

She said to manage demand and ensure funding is directed to those that need it most, Whaikaha made the difficult decision.

“The changes to the purchasing rules do not affect the amount of funding people receive, just how it can be used,” she said, adding Whaikaha will work to retain as much flexibility as possible, while ensuring funding is equitably allocated.

“We know that supporting the wellbeing of carers ultimately supports the wellbeing of the whole whānau. Carers will still be able to use funding to take a break and to meet the costs of alternate care arrangements for the disabled person they care for as a way to look after their own wellbeing.”

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