The federal government’s decision to take the first steps towards designing a National Disability Insurance Scheme, giving greater coverage and choice to people living with a disability, has been a long time coming, carers say.

Heike Fabig is president of the Association for Children with Disabilities in New South Wales. She is also a mother of three, and two of her children have cerebral palsy. Fabig says the “guaranteed stream of income” that the NDIS promises will make things less taxing for her and her family — not only financially, but also emotionally.

Five-year-old daughter Billie needs a new power chair, a type of electric wheelchair she is able to drive around herself, after outgrowing the current one. It’s a lengthy and exhausting process of applications, phone calls and waiting lists.

Fabig began the applications in January and has been told she may have to wait another 18 months before a new chair arrives. They’re designed to accommodate growing kids, but Heike says in some extreme cases children have actually outgrown their chair by the time they are delivered.

Not having the appropriate equipment means Billie has experienced setbacks in learning the types of things kids inevitably learn growing up. She gives the example of pulling all the pots and pans out of the kitchen cupboards — seemingly inconsequential, but Fabig says small things such as this teach children lessons we take for granted: some pots are light, some pots are heavy, and if you drop one on your toes it will hurt.

The alternative is putting Billie in a pram or a wheelchair until they get the power chair. This means two years of missing out on these valuable lessons, and avoidable delays in her development.

Aside from having access to crucial equipment and resources, another benefit is the sense of empowerment she hopes a national insurance scheme will give her children. She says it will make her children, like anyone else, “consumers of a product”, rather than having to ask a charity or a government agency for things that they need.

The current process contributes to what she says is a “mindset of dependence”, where children who grow up with disabilities feel they should make do with what they can get. Fabig says it’s a mindset she doesn’t want her kids to grow up with.

“[It] tells my children that they are second-class citizens and that they must be grateful for what they get,” she told Crikey. “If you need glasses, you don’t expect to have to go and to beg for some.” The insurance scheme would give her children “control over the funding” to “work out what they want or need”.

Fabig has spent more than $300,000 on home modifications, car modifications, manual wheelchairs and other equipment for her children.

The way she sees it, $17,000 for a wheelchair is expensive, but in the long term is it actually an investment. Providing Billie with the necessary resources to develop at the same rate as her peers will give her the ability, like any other child, to develop into an adult who works, pays taxes and contributes to her community.

She says Billie doesn’t really understand it. She does understand that her best friend at school is waiting for a power chair and so she can’t drive around the school with her.

When Billie first got a power chair, Fabig says it took three hours to discover, much to her delight, that she could run away from her mum.

The difference, she says, is “about being taken somewhere, or choosing where you go”.