A woman who cares for her 23-year-old son is pinning her hopes on the National Disability Insurance Scheme, hoping it will better support her son and her family. 

Story courtesy - ABC Radio Gippsland News

Frances Terranova, from Morwell in Victoria's Latrobe Valley, is the full-time carer for her adult son, who has mild to moderate autism and needs the same amount of supervision a toddler needs.

"I find myself thinking I would have been such a good mum," she said.

"I am a good mum now, but I would have been a mum that he enjoyed. We can't converse.

"When he was 19, I said to him 'When I was your age I met your dad', and that meant nothing to him."

Ms Terranova said she loved her son, who had a personality she described as "placid and gentle, like his dad" with a "wicked" sense of humour.

"I love him, but I don't necessarily like the way he is," she said.

"My husband and I recently went overseas and a year in advance we had to organise respite care for our son. You don't have that spontaneity of saying 'Let's go out for tea tonight'."

Ms Terranova said she hoped her son Nicholas would be able to move into accommodation that enabled him to live independently.

She is pinning this hope on the arrival of the NDIS in her region from October 2017.

"I think there would be nothing more traumatic for someone like Nick still to be living with us when we die of old age," she said.

NDIS wait continues

NDIS trials in the Barwon region of Victoria, near Geelong, have been underway since 2013.

The far east of Victoria, in the shires of East Gippsland and Wellington, will be the last areas where the new disability support scheme is rolled out.

Gippsland Carers Association president Jean Tops said it was important people with a disability throughout Gippsland started preparing for the arrival of the NDIS.

The association recently held a forum in Morwell, attended by 70 people, outlining the changes that would occur once the insurance scheme arrived.

"This is the goose that laid the golden egg time for families who have desperately waited for funding to be able to provide some service, or better service, to the person that they care for," she said.

"Because the level of funding that will be provided in the long run is more than double than what is currently being provided, obviously things have to get better for a lot of people.

"Things may not get a lot better for some people, and things may not get better at all for people who don't fit the category of 'severe and profound disability', and they may well find themselves being put on a waiting list, but the awareness will grow as a consequence."

Disability support provider The Tipping Foundation has been involved in the NDIS trial in Barwon.

Chief executive Graeme Kelly said people had to plan for the NDIS rollout.

"It's a great step forward for people with a disability, but the best will only come to those who prepare for it," he said.

"While people are aware of it, it's a different thing to actually enter into a plan. You have to enter a plan for your needs, as well as a plan for your aspirations for the future."

Once the insurance scheme is rolled out to the last region in the country, 'outer Gippsland' in December 2018, the Australian taxpayer will realise the full cost of the scheme.

"In terms of dollars, when it is rolled out in full in 2019, the cost each year to government will be $22 billion," Mr Kelly said.

"The Tipping Foundation's experience in the Barwon region, we've been working with around about 70 people, our experience has been that people have what they had before, or more than what they had before.

"My experience of working with those people is that they're happier, they're more in control of their resources."

Family hopes for a secure future

Ms Terranova, her husband Paul and Nicholas are hoping for independence. Ms Terranova said in 2012, when Mr Terranova had heart issues, she could not travel with him to Melbourne for treatment because she could not leave Nicholas.

"Nick was 19 years old back then, but 19 years old and I still can't be there for my husband," she said.

"In an ideal world he'll be living out of home in a year or so and be used to not having us around.

"I wish there was more awareness in the public about what it's like to grieve for a child that you thought you had, that you don't have, and never will have. I wish there was more understanding.

"There's no understanding of the immense grief. It's like a scab that every now and again gets picked. The grief of having a child that will never reach the potential that you would like them to reach.

"I'm not talking about being a lawyer or anything like that, just someone who will be happy and independent so you know you can go to your grave with peace of mind that they'll be okay.

"I'm hoping with the NDIS that he'll be settled in a home."

AUDIO: ABC Gippsland reporter Marian Macdonald speaks with Gippsland carer and mother Frances Terranova (ABC News)