Service providers collaborating on a unique development to enable people with disabilities and their ageing parent carers to stay living together as they age say they are documenting their experiences and will produce a blueprint to guide other providers.

The Pathways Project is being built by IRT, which will own and operate the community. Its development has been guided by a steering committee consisting of IRT, Greenacres Disability Services, Community Options Illawarra and Interchange Illawarra, with the University of Wollongong assisting with research and producing the project report that will contain the blueprint.

While similar accommodation models were being developed elsewhere, they tended to support the person with an intellectual disability to live independently from their parents, often in separate but co-located accommodation. Uniquely, the Pathways Project will support the carer and person with a disability to stay together and age in place as a family, according to Heather Marciano, who is heading the project for IRT.

An aerial photo of construction of the Pathways Project in May
An aerial photo of construction of the Pathways Project in May

Another unique aspect of the project was that it separated the service delivery and accommodation components. In line with the ethos behind both the National Disability Insurance Scheme (NDIS) and consumer directed care in aged care, the model would give the residents full choice and control over the care services they received and who provided them, separate from the accommodation, she said.

When completed, the Pathways Project will include six one-bedroom and six two-bedroom villas designed to the highest universal design standards, supported by a five-bed respite centre and a community centre.

Ms Marciano said the project partners were keen for the lessons learned during the development and implementation to be shared with fellow providers, and the final report would outline what the project entailed, how it was delivered, the processes involved and challenges faced.

“We really want to share what we’re doing because if it means there will be more accommodation for people who are ageing with a disability then that’s a wonderful thing,” she told Australian Ageing Agenda.

Turning the sod on11 February, from left: Lord Mayor of Wollongong City Council Gordon Bradbery, IRT's  Heather Marciano and NSW Minister for Ageing and Disability Services John Ajaka
Sod turning on 11 February, from left: Mayor of Wollongong City Council Gordon Bradbery, IRT’s Heather Marciano and NSW Minister for Ageing and Disability Services John Ajaka

The project, which has been underway since 2010, has involved an extensive research component that found people with disabilities and their ageing parent carers were often forced to separate once they reached a crisis point. Ms Marciano said:

“The person with disability often ended up being placed in a group home in the disability sector with the ageing parent carer either going into hospital or into aged care or passing away. So there was a feeling of loss, not just for the loss of their parent carer but also the family home.”

The research also found that the person with disability was often accessing services, such as a day placement service or transition to work program, but the ageing carer parent was often at home without much support. “With the inclusion of the community centre on site we hope the ageing parent carer will have the opportunity to connect with people their own age, and be really well supported within that broader community,” said Ms Marciano.

Gaining interest at home and abroad

As part of the initial research stage an integration project was conducted at an IRT site, where a day service program was trialled to evaluate how people with intellectual disability would integrate within an aged care community. Ms Marciano and four University of Wollongong academics documented that initiative and presented on the findings at conferences in New Zealand and Greece.

Similarly, the project is gaining attention closer to home. Several aged care providers have undertaken site visits to learn more about the development.

The project has been funded through $2.9 million under the NSW Government’s Restart NSW Illawarra Infrastructure Fund, while IRT contributed almost $1 million in cash and in-kind contributions.

Ms Marciano said the Pathways Project was on track to be completed in November, and it was hoped the first families would move in by the end of the year.

The final project report, including the blueprint, is expected to be completed by mid-2016.

More information on the project is available on the IRT website 

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3 Comments

  1. Well done on the development in NSW. The Wintringham development in Victoria opened a few years ago in Dandenong is great example of how this works.

  2. We love seeing these fabulous initiatives. To create a collaborative supportive project that eases the burden on families is a winner all round.

    We expect to see more enablers in time to come, with technology and the Internet of Things, imported prefab structures and 3D printing.

    This is the beginning of our future!

  3. I have grave concerns about this type of development. Why cannot this country provide age appropriate residential settings for people with a disability so they can move in a timely and gradual manner from the parents’ home as their non-disabled peers do? And as other first world countries manage to do? Why cannot parents who have cared for a lifetime be relieved of this duty and enjoy a little independence in their waning years? If this had happened, the ageing carer would have had opportunities to forge networks and not find himself/herself (but almost always herself) at home without much support. This arrangement sounds to me like it is setting up the ageing parent to continue to care with some supports. Why should this model be considered more appropriate than a nursing home, which is generally considered a poor solution for younger people with a disability? The part I agree strongly with is the statement about the loss a person with a disability experiences when the long term support arrangements break down. This is the unspoken elephant – the reason alternatives must be provided. A PWD loses at the same moment the primary carer, family home, work or day place, friends, community, all supports as they get transferred to any vacant bed in the region. This for a person with poor adaptive capacity can be life-threatening at worst, traumatic at best. But moving them in with the ageing parent smacks of cost cutting – no wonder John Ajaka is sod-turning!

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