Disabled man's family have to let support staff go after funding stops

The family of a disabled man who needs round-the-clock care say they are having to let go of his support staff after funding was suddenly cut.

Ryan Cook's family said they had been "ghosted" by government ministry staff and left in the dark about the reasons for the cut.

However, the Ministry of Social Development said it was waiting for more information from the family, who had asked for a funding increase.

The Woodville family rejected that, saying they had provided everything asked of them.

After more than three years of funding under the Enabling Good Lives scheme, administered by Mana Whaikaha, a payment on 13 September was missed.

And since then Ryan Cook's family have not received a dollar - nor a reason why.

"How on earth do they think Ryan is actually surviving?" his mum, Pip Cook, said.

"It's not about going to the park for him, or going to a group. It's actually about his daily needs."

Ryan, 20, has cri-du-chat syndrome, and has many physical and developmental challenges. He came to the Cooks under foster care, but they consider him part of their family.

Under Enabling Good Lives they have received an annual budget to spend on his support, including a team of carers.

But it was not renewed this year and from June they were getting fortnightly payments. Now, these had stopped.

As well as waiting for more information the Ministry of Social Development, which has taken responsibility for disability services from the Ministry of Disabled People, said the Cooks asked for a "significant" increase in funding, and officials needed more details about this.

"We have answered all of their questions," Pip Cook said.

"We've been in front of a panel and they have just stopped Ryan's funding with no communication to us at all."

This has forced the Cooks to dip into their own pockets.

"We are having to subsidise [Ryan's care] ourselves. We are having to cut our carers' hours back.

"As a result of that one of our carers is laying a grievance against us as an employer because we haven't been able to give her proper notice."

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If the funding was not restored, Pip Cook said she would have to stop working on the family dairy farm to care for Ryan.

They live in Woodville, where there are no suitable residential care options.

Family advocate Jane Carrigan said she disputed that the Cooks asked for a significant increase, saying they had requested an extra $40,000 out of a budget of more than $250,000.

That was because of Ryan's changing needs - for example, as he grew he needed two people to lift him.

Carrigan said her attempts to contact staff in the ministries of disabled people and social development to find out what was happening had gone unanswered.

The family received an email this week from one official saying they were off sick, but providing no alternative contact.

"You don't go from funding a high-needs man, with a large funding package, then whip it out from under the family without having serious ramifications across the board.

"Ryan's mum has been hugely distressed by this."

In a statement, Ministry of Social Development disability support services programme director Alastair Hill said the Cooks needed to give Enabling Good Lives provider Mana Whaikaha the information it said it needed.

"We would urge the family to provide the information Mana Whaikaha needs for disability-related support to be provided.

"Mana Whaikaha is committed to ensuring Ryan has access to the supports he needs, and to working with the family to progress the proposal for funded disability supports."

Despite payments to the Cooks stopping, Hill said their funding was not cut.

Instead, the family needed to provide details to confirm an increase in funding was appropriate.

"Mana Whaikaha has asked for clarification about what the requested funding will be used for, and how this will support Ryan's disability-related needs, as this remains unclear from the information provided so far."

Once the information was provided, and Mana Whaikaha assessed it, it would then go to a review panel.

"After the panel decision, Ryan or his representative can seek reconsideration of the decision if they don't agree with it. The panel can meet as required so a decision can be provided quickly."

The Cook family appeared before a panel three months ago, but it did not reach a decision about the annual budget. Until the payments stopped, they received fortnightly payments.

Hill said Enabling Good Lives funding had increased this year.