Parents of man with severe disability frustrated by care funding change

• Family of man with severe disabilities say funding change means they cannot plan for his care
• Advocate calls situation cruel and inhumane
• Ministry says situation is interim as it awaits information from family to make a funding decision
• Family says it has answered all the ministry's questions

The frustrated parents of a man with severe disabilities say they have lost the ability to plan for his future thanks to a change in the way his care is funded.

Their advocate says the situation is cruel and inhumane, but the Ministry of Disabled People, Whaikaha, says it is just an interim measure.

Ryan Cook's family have for the past few years received an annual budget for his care.

In June it was not renewed and instead they are only now receiving funding six weeks at a time with, they say, no explanation for the change from the ministry.

The family employ four staff to care for Ryan, so the change means they no longer have any long-term certainty that can continue.

Ryan, 20, needs 24-7 care due to his severe disabilities.

"Ryan has cri-du-chat, which is not overly common in New Zealand," said his mother, Pip Cook.

"That causes a lot of developmental delay. He's also got a lot of physical challenges. He's got very little communication.

"He is incredibly social and is still quite mobile. He moves around on his knees."

Cri-du-chat means cry of the cat, as children with the syndrome cry in such a way.

Ryan Cook needs help to be lifted and uses a wheelchair when he is out, and also has another condition that means anything not secured goes into his mouth, so he needs constant monitoring.

Parents Pip and Jules, who run a dairy farm and plant nursery, have spent most of the annual budget they have received for his care in the past few years on their team of carers, who come to their Woodville home.

That funding, under the Enabling Good Lives scheme, has been reviewed annually. The scheme allows a family to decide how it is spent.

In June though, the Cooks were told they had to face a panel of assessors, who would rule on what was required for the future.

Pip Cook said going before the panel was intimidating, although she was helped by family advocate Jane Carrigan.

"We were led to believe that we would come in front of the panel, talk about Ryan's needs and what was required, and then from that we would get a decision pretty quickly on his yearly budget and we could all move forward."

But the panel had still not made a decision, and instead funding has been allocated in six-week instalments, making planning for the year impossible, Pip Cook said.

"Not only is his therapy unavailable to him now - there's the uncertainty of what that looks like for his future.

"For families like us we can't afford to fund Ryan, his care and everything ourselves. They're playing with people's lives, basically."

Changes to disability funding this year were already affecting Ryan's development.

Tightening criteria on how a family's budget could be spent meant it could not go towards private sector services available for free in the public sector.

But Pip Cook said what was available through the likes of publicly funded physio was nowhere near what was required or what Ryan was getting.

"He's back to living a life where, at some point, he's going to lose the little mobility he has. He's going to be far more wheelchair bound, which is incredibly frustrating.

"Part of cri-du-chat is hyperactivity. For him to be stationary in a wheelchair is actually an awful way for him to live his life."

In a statement, ministry deputy chief executive, commissioning, design and delivery, Amanda Bleckmann said requests for high-cost funding were considered by an Enabling Good Lives panel.

It had requested more information to make an informed decision about Ryan's funding, and the six-week rollovers were an interim measure until it received that information.

"We appreciate that this situation leads to uncertainty and can be upsetting. Ryan's caregivers and advocate are being encouraged to provide the information requested, so that the panel can make an informed decision."

But Pip Cook and Jane Carrigan said they had answered all questions asked of them.

Bleckmann said changes to how funding could be spent were made earlier this year to help the ministry stay within its budget.

Carrigan said the treatment of the Cooks was not on.

"The rollover of six-week contracts makes it enormously difficult for families who have to recruit, train and retain their own staff to help provide the disability care and support for their disabled child.

"That is very hard to do when you don't know from six weeks to six weeks if you're going to have a budget or not."

The ministry was asked, but did not say, how many families had to go before panels of assessors and how many were on short-term funding rollovers.