While the milestone will certainly be cause for celebration, it will also usher in a period of even greater uncertainty for his parents Karna and Julian.

Malcolm has autism and requires one-on-one care, 24 hours a day.  As his parents grow older, they fear what will happen to Malcolm if the worst should happen to them.

Together with life-long friend Sandra Blaik, whose son Rohan also has complex autism, Ms O'Dea is hoping to set up a house where both boys can live independently with support, perhaps forming a community alongside others with a disability or developing their own business.

It's one of a number of specialist accommodation models that could be explored under the ACT government's new housing strategy, released late last month.

Under the plan, a new innovation fund will offer grants of up to $125,000 for low-cost housing projects targeted at people with disability, with expressions of interest opening early next year.

Most new public housing will be built to meet the needs of older people and those with a disability, as the government joins the push for national minimum accessibility standards in building regulation. Across the ACT market, a mandatory rating scheme that measures a property's accessibility when it is advertised will also be rolled out, starting on a voluntary basis.

And it can't come soon enough. Advocates warn Canberra's growing housing affordability crisis has now hit its disability sector, just as teething problems with the National Disability Insurance Scheme begin to bite.

Carers ACT chief executive Lisa Kelly said rents were higher than she had ever seen them, pushing people out of the private market and onto long waiting lists for public housing.

"It's the Bermuda Triangle in some ways and now the disability world has come up against the affordable housing problem we have here in Canberra, there's just not enough properties."

"This is one of our biggest social challenges at the moment."

A woman who was facing eviction and asked not to be named said she had been searching for an accessible rental for her young family for months and still had nowhere to go.

"We've had to go on the public housing waiting list," she said.

Jamelle Boettcher at Advocacy for Inclusion ACT said she had heard a number of horror stories from people with disability struggling to find housing, particularly since the roll-out of the NDIS. Some had been forced into group homes or left in inappropriate accomodation.

A report released this year found that the level of unmet demand for specialist disability housing, which is funded by the NDIS for a small number of people with very complex needs, was notably high in Canberra considering its size.

An ACT government spokeswoman said recent consultation had also underlined the need for more dedicated affordable housing which incorporated "the highest levels of accessibility".

Sixty-six units in Kaleen had since been commissioned to fill the "existing gap in housing for people with disability, particularly those not eligible for the NDIS", she said. Another $4.5 million over the next two years would go towards more housing tailored for older Aboriginal and Torres Strait Islander people, following the success of the five Mura Gunya public housing units opened in 2016, the spokeswoman said.

Both Carers ACT and the ACT Council of Social Services welcomed the new strategy but said they wanted to see more practical detail.

Ms Kelly called on the government to strengthen the interface between the NDIS and housing as a "matter of priority", adding carers were often at increased risk of homelessness.

For the Blaik and O'Dea families, time is running out to secure Malcolm and Rohan a safe, stable life beyond high school.

"Parents are scared for the future," Ms Blaik said.

"What happens if you have a heart attack or a stroke? I want Rohan close to me but we can't keep caring for him forever, we're wearing out."

It took Sally Richards OAM 11 years to set up a community for her own son Jackson in Canberra. Benambra has now been running for the past five years as a mix of supported and public housing, but Ms Richards said governments needed to become more flexible to new ideas and help families design the homes that suited them.

"It shouldn't be so hard."

The ACT government will host a forum exploring housing options for people with disability on Friday.