Short-statured community seeks better NDIS support to live independently

There are many things in life people take for granted, such as having automatic doors open in front of you, going to a public toilet or even driving a car.

But for Sydney woman Sarah Keenahan, these "conveniences" represent barriers to her achieving her independence.

Ms Keenahan, who was born with the most common form of dwarfism, achondroplasia, is fighting for support from the National Disability Insurance Scheme (NDIS).

Six months ago, the National Disability Insurance Agency (NDIA), which administers the scheme, rejected the 20-year-old's application for support.

A follow-up application, in which she provided further information about her condition and needs, was also knocked back — leaving Ms Keenahan without funding for day-to-day requirements, including a key needed for car modifications.

In an email, the NDIA said: "Whilst Sarah requires car modifications, there is no evidence that she is unable to access the community through other modes of transport, including public transport."

Ms Keenahan said public transport was not a feasible way for her to travel to work because it would take her hours to get there, and she desperately needed support to have pedal extensions fitted to her car.  

"If you know I need assistance, then you're denying me that help — even when you know that I need it."

Her mother, Debra, has the same condition, and the only option left for Ms Keenahan is to borrow her mother's already-modified car to get around.

"To use public transport to get to her employment, it would take her a minimum of three and a half hours in one direction," Debra said.

While the women were frustrated by Ms Keenahan's ongoing fight for NDIS support, they were also concerned about what they believed was a lack of consistency within the system. 

"I'm fully aware of people who are taller than Sarah who have been ticked off for the NDIS on their first application," Debra said.

Calls for greater NDIS consistency

The Keenahans are not alone in their fight.

The national advocacy group for people with short stature says many have described similar experiences when applying for the NDIS.

The group says that not enough is known about the 300 different forms of dwarfism.

Short Statured People of Australia national president Sam Millard said a more streamlined application process was needed.

"We've been working with the agency for 18 months now on a case-by-case basis to help people who haven't been able to gain access," Mr Millard said.

The group's concerns coincide with increasing speculation about the future of the NDIS, with the federal government recently querying the long-term sustainability of the scheme in its current form.

This was making the short-statured community nervous. 

"It is concerning when you have a group of people who deserve access … struggling to get access," Mr Millard said.

"And that [access] will potentially become harder."

No 'ad hoc' decisions 

In a statement to the ABC, the NDIA rejected suggestions that decisions about people with disabilities were made on an "ad hoc" basis.

It said there were a number of proposed reforms to the NDIS, including the introduction of independent assessments for "greater fairness and consistency".

The reforms were not designed to cut individual plans and were aimed at improving the participant experience, it said.

As for Sarah Keenahan, she's determined to ensure much-needed NDIS support is available for everyone with her condition.

She said an adult who had the height of an eight or nine-year-old needed help to live an independent life.

"They have every right to be independent," Ms Keenahan said.