Tauranga woman Jodie Thorne uses a wheelchair due to having a degenerative muscle disorder, which severely limits her mobility. Her motorised, off-road wheelchair gives her independence - she can teach equestrian, take her dog for a walk, and go fishing with her husband. Her wheelchair needs repairing, but she has been denied government funding for it due to what she says is a “huge gap” in the system.

Jodie Thorne is in a “fight” with the health system.

The 44-year-old has facioscapulohumeral muscular dystrophy (FSHD) – a degenerative disorder that causes weakness in muscles.

When Thorne was diagnosed at age 12, she was unable to lift her arms, wink or whistle.

As she aged, she progressively needed to use a walking stick, a manual wheelchair and a motorised wheelchair.

“My arm muscles have deteriorated so much that I can’t push anymore.”

Her condition affected “pretty much everything”, including her shoulders, hips and core muscles.

The part-time web designer lives with her husband, Darren, who worked full-time and was her main carer.

Due to her disability, Thorne was approved for individualised funding through Enliven – an organisation that manages government-funded disability support services.

In November 2023, she bought a motorised, off-road wheelchair – which she called “the beast” – using individualised funding.

The $1500 ex-demo wheelchair had been an “absolute game-changer”.

Tauranga woman Jodie Thorne was diagnosed with Facioscapulohumeral Muscular Dystrophy when she was 12 and recently retired as a para-athlete in equestrian. Photo / Rachel Stringfellow Photography

The para-classified athlete retired from equestrian in March but continued to be involved in the sport by volunteering and coaching.

“That’s why my off-road chair is so important because, obviously, I’m in paddocks ... ”

She also enjoyed going to the beach, fishing, walking the dog and doing dog-agility training.

Recently, the lift and tilt functions on her wheelchair stopped working.

“I can’t get in and out of it myself now.”

The cost to repair it could be up to $4000 or “a lot more”, which she cannot afford.

Tauranga woman Jodie Thorne uses a wheelchair due to having a degenerative muscle disorder called facioscapulohumeral muscular dystrophy. Photo / Brydie Thompson

The Government introduced changes last year, which impacted what disabled people could purchase with government funding.

According to a new rule, “people are not able to buy a support when funding for that support has been turned down by (or on behalf of) the responsible government agency”.

Wheelchairs are the responsibility of the Ministry of Social Development’s Disability Support Services.

While the Government funded her a wheelchair which worked on flat ground, “they would never fund me a chair like the beast”, she said.

“That’s the fight I’m having at the moment.”

Thorne understood there needed to be “limits” on eligible purchases, but called for flexibility as “the new rules just seem ridiculous”.

For example, Thorne said she could buy a weighted blanket or noise-cancelling headphones.

“That’s no use for me.”

She said it was “frustrating” to have an allocated disability budget but being denied the opportunity to use it for repairs.

“It’s not a luxury ... I’m asking to be able to get out of my wheelchair on my own.”

Thorne said her condition would eventually mean she could no longer do that, and her outdoor activities were hugely beneficial for her health.

“Once I lose muscle, I can’t get it back again.”

Health and disability services general manager Wendy Hoskin, of Presbyterian Support Northern, which provides services via Enliven, said it understands Thorne’s frustration “and sincerely wish we were in a position to support her within the current funding rules”.

Tauranga woman Jodie Thorne - pictured with her husband Darren - uses a motorised wheelchair to go off-road, including to go fishing. Photo / Supplied

New rules came into effect last year and restricted individualised funding purchases, Hoskin said.

One of the purchasing rules said funding was not eligible for support where it had been turned down by the “responsible government agency”.

Hoskin said the government’s Disability Support Services (DSS) provided equipment to individuals with long-term disabilities.

She said individualised funding could no longer be used to purchase wheelchairs as they were the government’s responsibility.

Thorne referred to the list of approved powered wheelchairs – “none” were suitable “for the off-road terrain that my life outside of my home revolves around”.

Repairs declined as they ‘do not fit’ within guidelines

The Government’s equipment manual for disability support said funding is not available for mobility equipment “if the person had difficulty getting out and about in their community but can manage getting around in the home”.

Ministry of Social Development Disability Support Services associate deputy chief executive Anne Shaw confirmed repairs to the individualised funding-funded wheelchair were declined “as they do not fit within the current purchasing guidelines”.

She said it could fund wheeled mobility equipment to “support a person move in and around their home safely and access their community”.

Shaw acknowledged the impact of changes to purchasing rules, which were introduced in March 2024, “to limit ongoing acceleration of costs and standardise disability support funding”.The Minister for Disability Issues commissioned an independent review of DSS last year. Further work on “stabilisation of services” is under way.

DSS consulted with the community this year on flexible funding and how assessments and allocations are carried out.

“We are expecting decisions from the Government on flexible funding in the coming months.”