Small step in health fight

A YOUNG girl whose National Disability Insurance Scheme funding was cut in half has been given a reprieve after being approved for new ankle-foot orthoses worth more than $3000.

Ruby Fenton wasn’t breathing when she was born eight weeks premature in February 2012.

The lack of oxygen caused her to suffer a brain injury called periventricular leukomalacia.

She was then diagnosed with spastic diplegia cerebral palsy, global developmental delay, autism spectrum disorder and low vision.

The John Paul II Catholic Primary School student continues to require specialist medical treatment, physiotherapy, occupational therapy and speech pathology.

However, her NDIS funding was cut from $28,000 last year to $14,000 this year.

“Each therapy session is usually $195 per hour,” Ruby’s mother Carly Edwards told the Mercury.

“As a parent of a child that has a disability it’s already extremely difficult without having to fight for basic therapies that help my child so she can flourish and reach her goals.”

Ms Edwards has applied for a “review of a reviewable decision” through an advocacy agency as she estimates Ruby needs about $36,000 of treatment and therapy each year.

In some good news for the Claremont family, Ruby’s new $3185 AFOs were approved after five months following questions from the

Mercury to the NDIS.

AFOs combat a number of factors including muscle weakness, joint instability and high muscle tone.

A National Disability Insurance Agency spokeswoman yesterday said the agency remained “committed to ensuring participants receive the disability-related supports they need”.

“The NDIA apologises to Ruby and her family for their recent experience with the NDIS and regrets it did not live up to the standards to which the NDIA aspires,” the spokeswoman said.