Perth grandmother denied NDIS funding for one-in-a-million condition

Karen Lockett lives with a one-in-a-million condition.

The grandmother uses a walker to move around her Perth home and her husband Alan is on standby to help with simple tasks like showering or using the toilet.

Lockett's health battle began more than a decade ago when she received an initial diagnosis of anxiety, then functional neurological disorder (FND).

Finally in November she was told she has a rare, progressive neurological disorder called stiff person syndrome.

The condition was thrust into the spotlight by global superstar Celine Dion, who opened up about her diagnosis in her Amazon Prime documentary I Am: Celine Dion.

Neurologist Dr Victor Fung said stiff person syndrome sufferers can experience "extremely painful" spasms that can last minutes or hours at a time.

"[It's] often triggered by things such as unexpected noise or startle, sometimes bumping into something, sometimes simply stress," Fung said.

"It's so rare that there's no way one can predict whether one will get it or not."

To make a difficult diagnosis even more challenging, Lockett has been unable to secure NDIS support.

The 65-year-old applied to the service one year ago when she was told she had FND - but was knocked back.

Lockett's treatment involves ongoing injections for the next six months.

The NDIS told A Current Affair that access to services is based on a person's functional impairment, not on their condition or diagnosis.

Lockett has been assessed three times this year, but each time has been told she does not meet NDIS eligibility.

The National Disability Insurance Agency (NDIA) is currently assessing Lockett's most recent application.

In the meantime, Lockett has no other option but to rely on her husband, who at 70 has health issues of his own.

"It's getting harder for me for sure and I'm not sure how much longer I can keep doing it, responsibly anyway," Alan said.

Watch the full video in the player above.

FULL NDIA STATEMENT

Access to the NDIS is based on a person's functional impairment - not on their condition or diagnoses.

To be able to access NDIS support, a person must meet all the eligibility criteria, including permanency.

Karen's eligibility requests have been assessed three times this year, with the decision each time that she does not meet NDIS eligibility.

Should a participant not agree with an Agency decision, they can request a review of that decision.

Karen has requested the NDIA review the most recent access not met decision, which the Agency is currently progressing.

The Agency makes access and planning decisions based on all available evidence at the time, and in accordance with the Act.

The health system will continue to be responsible for the diagnosis and clinical treatment of health conditions.