Disability community relies on fundraising to pay for essential services Government does not fund

As a first-time mother with cerebral palsy, Brie Fenton was anxious.

With very little information available about parenting with a disability, speaking to a counselor reassured the 24-year-old Aucklander that she would pull through.

Now, holding her 5-month-old daughter, Olive, she is relieved how far she has come and credits the fundraising efforts of the Cerebral Palsy Society’s getProgramme for helping her cover the cost of a counselor’s consultation.

During her pregnancy, she also purchased a TENS (Transcutaneous Electrical Nerve Stimulation) machine through the getProgramme which helped her deal with pregnancy pains.

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She said such things are not funded by the government, but are the hidden costs of having a disability, commonly referred to as “disability tax”.

“It almost seems luxurious to most, but these are real necessities for living with a disability, because my body doesn’t function like most people and it needs help to keep functioning. It’s all the little things most people don’t think about.

Brie Fenton, Jude Crosweller and Jaimee-Leigh Crosweller say funding from the Cerebral Palsy Society is vital to enable them to pay for things like counseling and transport.

Chris McKeen / Stuff

Brie Fenton, Jude Crosweller and Jaimee-Leigh Crosweller say funding from the Cerebral Palsy Society is vital to enable them to pay for things like counseling and transport.

Fenton’s sister, Jaimee-Leigh Crosweller, also has cerebral palsy and benefited from the same getProgram.

The 30-year-old used the funding to help buy an overbed table and to cover some transportation costs as she does not drive.

During the day, Crosweller likes to cook, bake and sew coasters and placemats to sell at the markets. The flexibility of using getProgramme’s funding has made a huge difference in giving him more independence to move around.

Brie Fenton has cerebral palsy and is a first-time mom to 5-month-old Olive.

Chris McKeen / Stuff

Brie Fenton has cerebral palsy and is a first-time mom to 5-month-old Olive.

Their mother, Jude Crosweller, said the Cerebral Palsy Society funding was “amazing for a lot of things”.

She said a $300 getProgramme grant helped pay for Functional Adaptive Movement classes, which was an exercise program designed for people with disabilities.

In terms of funding and general government services, she said it should be “obviously available, instead of having to beg and borrow to try and find them”.

Jude Crosweller said the Cerebral Palsy Society funding was

Chris McKeen / Stuff

Jude Crosweller said the Cerebral Palsy Society funding was “amazing for a lot of things”.

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Cerebral Palsy Society chief executive Clare Williams said the getProgram helps people pay for equipment and services that don’t meet the government threshold.

For example, riding lessons and therapy through New Zealand Riding for the Disabled (NZRDA) cost $95 per lesson, but riders are only asked to pay a donation of up to $30.

There were government contracts to contribute a nominal amount to the courses, said NZRDA chief executive Donna Kennedy.

But she said the government should cover the full cost of riding lessons for people with disabilities because it is “life changing”.

Williams said there was essentially no government funding that would cover those lessons.

“All [Cerebral Palsy Society] The programs and services we provide were designed with the goal of leveling the playing field for people with cerebral palsy to enable them to live their lives like all Kiwis,” she said.

She believes that rolling out the Enabling Good Lives (EGL) approach to disability assistance funding nationwide would make a positive difference for people with disabilities and give them more freedom and choice.

Sisters Brie Fenton and Jaimee-Leigh Crosweller used funding from the Cerebral Palsy Society's getProgramme to help pay for Functional Adaptive Movement Classes, an exercise program designed for people with disabilities.

Chris McKeen / Stuff

Sisters Brie Fenton and Jaimee-Leigh Crosweller used funding from the Cerebral Palsy Society’s getProgramme to help pay for Functional Adaptive Movement Classes, an exercise program designed for people with disabilities.

Russ Cooke, Whaikaha’s acting deputy managing director, performance and governance, said EGL is a principle-based approach to supporting people with disabilities that seeks to increase options for how people use their funding and have an individual and whānau-led approach.

EGL prototypes in Christchurch, Waikato and MidCentral “showed improvements including increased independence and social connections, better quality of life, and better access to education and employment opportunities.”

There was no timeline on when EGL would cover all regions, but planning work had begun, he said.

“Funding has been set aside in the 2022 budget to advance the expansion of the Enabling Good Lives approach across the motu,” he said.

“However, as this funding is being held on an emergency basis, it must meet a number of Cabinet requirements before it can be withdrawn, and the team is working hard on this.”

Cooke said it was a “priority” for Whaikaha to allow people to judge for themselves their own funding priorities within their allocated budget, rather than being controlled by the funder.

“It gives people more flexibility and control, which is what the EGL approach is all about.”

Clare Williams is the CEO of the Cerebral Palsy Society.

PROVIDED

Clare Williams is the CEO of the Cerebral Palsy Society.

But in the meantime, with the thresholds and “onerous processes” currently in place for disability relief funding, Williams said members of the organization “often give up half the time because of the fight.”

“They already have the barriers of every day trying to live and make things work with their condition and then beyond to continue to expand their energy to fight for their rights.”

In the June 2021 to July 2022 fundraising year, the Cerebral Palsy Society awarded 32 grants totaling $52,837, spending $15,000 more than last fiscal year.

She said that’s why Cerebral Palsy Society’s Be Green Be Seen Campaign was important.

“With fundraising, we realize we cannot continue to offer and support our members to this extent and with this demand and growth,” Williams said.

World Cerebral Palsy Day is October 6. You can donate to Cerebral Palsy Society here.

Michelle J. Kelley