There was nothing.

So now, when she hears Lili's squeals of delight at the sight of her favourite teddy bear, the Albion Park Rail mum knows her push for a "mainstream life" for her severely disabled daughter was the right choice.

Ms Morgan has sacrificed a lot to see wheelchair-bound Lili find her way at Shell Cove Public School.

Despite not being able to talk and suffering severe developmental disorders, the eight-year-old is one of the most popular children in school.

"Now she is mischievous and gets into everything. She loves school, she has a very good relationship with the librarian, she loved pulling out all the books," Ms Morgan said of her "superstar" year 2 student.

Lili has complete agenesis of the corpus callosum (absence of the area of the brain that connects the two cerebral hemispheres), epilepsy, microcephaly, sensory processing disorder and severe global development delay.

She manages to move around for short periods on her knees and communicates by verbal gestures and noises.

"She understands food, drink, and she knows people, she is very social," her proud mum said. "That's why it's really important to give her a stimulating environment and why I went down the inclusive education road," she said.

Seeing Lili thrive at school alongside her sister Isabella, 11, and brother Jett, 6, is reward enough for Ms Morgan, but with countless obstacles ahead, she needs financial help.

The single mum is one of hundreds of carers in the Illawarra desperate for the government to include the region in its National Disability Insurance Scheme (NDIS) roll-out.

Australia's Productivity Commission estimates the disability services sector receives only half the funding necessary to meet the needs of the disabled population.

"There is so much I can go into in regards to funding, equipment, how the NDIS will help us in our journey with Lili in the times ahead and how it would have been helpful previously," Ms Morgan said.

To start with, Lili had to wait 18 months for a wheelchair when she started school.

"She had to start with a pram thing, which wasn't appropriate for her and it literally took us a year for her to get settled in it.

"Not long after, her wheelchair arrived."

The next big hurdle is finding $33,000 to modify the family car for wheelchair access.

"At the moment I carry Lily from the car to her wheelchair, but she's eight years old now and she's getting bigger.

"You can't get government funding for these things and I can't work.

"No-one likes writing those 'poor me' letters to charities asking for help, but what else do you do?"

From July, the NDIS will be launched in five regions, but no funding plans have been outlined for the rest of Australia.

Illawarra disability service organisations will hold a mass morning tea at 10am on October 26 to lobby for long-term funding plans.

The DisabiliTEA event is at Kembla Grange racecourse.