Navigating Australia's aged care system has left Julia Sisson in tears from frustration, and her mother Jacqueline Jackson feeling as though she's begging for help at the government's feet.
The family first reached out to My Aged Care, the industry's national entry point, in August of 2018 to seek home care packages for Mrs Jackson and her husband Ivan Jackson, who has dementia.
Six months on from their packages' approval in October, they are yet to come to fruition, and Mrs Jackson's condition has declined from when she was assessed as needing basic or "level one" care.
"What bugs me so much is that I'm not asking for hand-outs or anything like that. We've worked hard all our lives. I was a professional teacher [and] my husband had a life of military service," Mrs Jackson said.
"It makes you feel as though you're stealing from [the government] or begging. We're just asking for help, nothing else."
My Aged Care has indicated that Mr Jackson's package could take another nine to 10 months to be allocated but Ms Sisson says navigating the system has multiplied the pain of the wait.
"Every day this week, I've started the day in bed on my laptop and on the phone. I get out of bed at about 10am when my father gets up, make him a cup of tea, and then start some more," Ms Sisson, who lives in Griffith, said.
"It's driven me from frustration, to tears, to anger."
The fact that Ms Sisson - a public service manager for 25 years - finds the system overwhelming only confirms its reputation as notoriously over-complicated and complex, she says.
A new industry called "aged care navigation" seeks to reduce the strain on home care and residential care applicants by effectively taking over their bids for an allocated place.
CEO of Independent Care Solutions in Braddon, Luisa Capezio, says a basic package costs about $2000 but that could go up to several thousand depending on a person's assets and means.
"What has been so magical about our services is that we take that stress off the family who are trying to navigate the aged care system," Ms Capezio said.
"They can leave all of the logistics, the paperwork, the Centrelink forms - all of that - to us to deal with."
The My Aged Care system is a "nuanced" one and people generally have the most difficulty with it if English is their second language or they are without internet access, Ms Capezio said.
The time needed to navigate the system was "intense", and services and providers needed to be contacted daily to ensure the best result.
Independent research of the My Aged Care system in 2017 found that more than 80 per cent of users had been happy with the outcome of its processes, a spokesperson for Aged Care Minister Ken Wyatt said.
People who didn't have internet access could call the contact centre and request printed information.
"I've had the most unbelievable examples where people have literally had to put their lives aside to dedicate their time to navigating the aged care space for their loved one," Ms Capezio said.
"It can literally take months [or even years]."
While Ms Capezio could not fastrack clients on waiting lists, her experience and network meant that they would get a place as quickly as possible, she said.
The Council on the Ageing was offering free information and community hub sessions in Canberra and Queanbeyan as part of an aged care navigation trial.
As of September 30, 2018 there were 735 people living in the ACT who were waiting for their approved home care package and had not been offered a lower level home care package in the interim.
More than 97 per cent of those people had been approved for Commonwealth Home Support Program services.
The median wait time for Canberrans to enter a residential aged care facility once they had been approved for a place was 301 days.
The 2019-20 federal budget included 10,000 new home care packages across Australia on top of 10,000 announced in December 2018 -180 of which had been allocated to the ACT - and 14,000 in the 2018-19 budget.
A new assessment framework would be put in place in July 2020 and an online progress tracker was also being implemented, the minister's spokesperson said.
The government invested $61.7 million in My Aged Care in 2018-19 and the system was continuously being independently reviewed and upgraded.