Lily Sharrock is resilient, intelligent and determined, attributes that saw her raise almost $4000 for the Cerebral Palsy Alliance and climb to the top of Mount Kosciuszko in her wheelchair about a month ago.
The Scullin 12-year-old and her parents have benefited from access to the therapies, programs and specialists suggested or offered by Friends of Brain Injured Children. But the Canberra organisation may have to cut its services once another not-for-profit closes its doors.
Friends of Brain Injured Children office manager Libby Steeper said the looming closure of Self Help Organisations United Together - SHOUT - meant her organisation would have to spend "a lot more" on rent. Friends of Brain Injured Children is based in SHOUT's Pearce office and benefits from its infrastructure and advice.
"I think between $5000 to $10,000 a year we would otherwise be able to spend on parents we now have to just spend to keep the doors open," Ms Steeper said.
"[SHOUT also] saves a lot of admin time and it means we do a better job if the basics are done better, and of course that means we're able to focus on our families."
SHOUT, an umbrella organisation with 47 members, was funded by Disability ACT until the introduction of the NDIS. It received NDIS transitional funding for the past three years but has no guarantee it will qualify for ongoing support.
The organisation unsuccessfully appealed to the ACT government for funding certainty and, if it does not receive a lifeline within the next fortnight, will not have the base funding to continue beyond May 31.
Canberra Liberals disability spokeswoman Elizabeth Lee accused Labor of losing its "direction ... soul and conscience" and called on the government to fund SHOUT until July 2019. SHOUT has asked for $110,000 for the next financial year plus 2.5 per cent in 2018-19.
"[This] government ... has found millions of dollars for failed container villages, welcome signs, beach volley ball courts and a gold-plated tram with a gold-plated package for the head of the project," she said.
"The same government that now cannot find $110,000 for children with cancer, for families with brain injured children, for children with Down syndrome and motor neurone disease, for cancer support groups."
Liberal Andrew Wall said the government should at least agree to fund SHOUT on the proviso that if NDIS funding came through the government could withdraw its support.
"Maybe we should pass the hat around here and all of us can chip in a small proportion of our salary because that's less than we earn," he said.
ACT Disability Minister Rachel Stephen-Smith said her office had been busy reassuring SHOUT's member organisations they would continue to receive support and working with the Health Minister to find alternate funding sources.
She said the government had also worked with SHOUT for several years to ease its transition to the NDIS.
"The ACT Government remains committed to working with SHOUT and other community organisations to ensure that SHOUT members are supported and that the transition to any new arrangement is as smooth as possible," she said in a statement.
The Greens did not agree to the Liberals' plea. After expressing her support for SHOUT, Caroline Le Couteur said: "It's not realistic or appropriate for the ACT government to provide funding for organisations whose services are covered by the remit of the NDIS."
Lily's father Jim said it would be of great concern if Friends of Brain Injured Children had to reduce its offerings.
"It was great running into them," he said.
"We went from struggling to providing Lily with a really good life."