Dunedin man with rare genetic disorder's 15 year battle for support after misdiagnosis

A Dunedin man with a rare genetic disorder says he has fallen through the cracks of the system that should have been helping him for the past 15 years. Photo / RNZ

A Dunedin man with a rare genetic disorder says he has fallen through the cracks of the system that should have been helping him for the past 15 years.

David Court, 49, left work at Port Otago in 2007 suffering from what he was told at the time was depression.

That first misdiagnosis turned into a years-long battle with both a condition he now knew was hereditary spastic paraplegia and with the Ministry of Social Development for payments he said he was rightfully owed.

His illness caused him muscle weakness, affected his walking and speech, and could lead to an intellectual disability, or dementia, Court said.

But with a diagnosis of depression more than a decade ago, Court was granted a sickness benefit when he left work.

Years later he applied for a supported-living payment, also known as an invalid's benefit.

His claim was denied.

Only after years of fighting for it, was he awarded about $10,000 from the ministry in backdated benefits along with $2000 for pain and suffering, he said.

"After I got a lawyer, they paid," Court said.

The ministry recognised he should have been on the maximum benefit since 2007.

But entitlements for the sickness benefits and the supported-living payment were not the same and he was still trying to recoup the difference.

"I know it's quite difficult to follow — it's what they rely on," Court said.

"They make things quite difficult by splitting things up and not telling you what you should be entitled to.

"I can understand them when there's people that don't want to work ... but my situation is quite clear.

"I've worked all my life and there's blood work, a report done — there's no way they can say I am trying to have them on. It's quite clear what I am saying, and what I am wanting."

MSD regional director Simon Rakiraki said Court first applied for a supported-living payment in 2013.

That was declined on the advice of a doctor paid by the MSD to provide an independent assessment, Rakiraki said.

Following new information, the ministry eventually granted him a supported-living payment, backdated to April 2013.

Then, based on a new diagnosis, provided in 2017, Court appealed to backdate his entitlement to 2007.

In late 2018, he applied for a judicial review on the decision of the appeals board.

"We accepted that the original decision was wrong and agreed to backdate the payment to 2007," Rakiraki said.

"We conducted our review in April 2019 and paid David his full and correct entitlement."

In June 2019, officials met Court to discuss the ministry's dealings with him and the issues he had with the MSD.

The MSD made an ex-gratia payment in recognition of the stress the delays in receiving his entitlement had caused.

More recently, a benefits review committee met in April last year to consider Court's application for a review of his disability allowance.

And, in May, Court was informed the committee had declined to hear his review, Rakiraki said.