By Stephen Easton
Commissioner Robert Fitzgerald and Associate Commissioner Sue Macri came to the North Ryde RSL on Monday, armed with comprehensive answers to most of the questions posed about their recommendations for wide-ranging reform to the sector.
But two questions highlighted particularly vexed issues, to which the commissioners told the audience, hosted by Alzheimer’s Australia NSW, that there were no easy answers.
The first concerned the PC’s reluctance to recommend allowing individual funding to be cashed out. The idea is strongly favoured by Alzheimer’s Australia, especially for people in remote areas and from culturally and linguistically diverse (CALD) backgrounds,
“First of all, in the remote areas there are not sufficient providers; families have said they want to have the money to pay [an informal carer] whether it’s a neighbour, a friend or an adult child, to provide the service to the person requiring it,” Alzheimer’s Australia NSW director Lucille Bloch said. “And it’s the same for the CALD community, who want people first and foremost who speak their language, who have their culture, and don’t necessarily want to use a provider.”
Ms Bloch asked why the system proposed by the PC does not put the money in the hands of consumers, and Mr Fitzgerald confirmed that the Caring for Older Australians commissioners had been in discussion with the dementia advocacy group on the issue, as well as the commissioners looking at the disability support sector, who did recommend the option to pay informal carers be widely available in that area.
“When we came to the aged care area we looked at that, and our view was that the system would work better if cashing out was very modest indeed,” Mr Fitzgerald said. “And the feedback we got from most participants was that as long as the entitlement was sufficient, and you could take the entitlement to a provider of your choice, and change that provider when you wished, that probably met most of the need.”
“There have been many trials overseas, and we’ve looked at those but I just want to be cautious about it. Cashing out has real dangers as well as strengths. One of the dangers is if you can fund anybody…very shortly thereafter we will have complaints about abuse, and we will have complaints about poorer quality care.”
Mr Fitzgerald added that it was a difficult question that involved a lot of political risk for the government to deal with, particularly in the area of aged care, and that it would have to come with strong safeguards against undesirable outcomes.
“The answer is not easy. Most cashing out around the world takes place where there’s an agreed care plan – so you can’t just take the money and spend it any way you like, you actually have to spend it according to the care plan. We’re looking at it.”
One group that cashing out might benefit is people with younger onset dementia (YOD), who do not fit easily under the umbrella of either aged care or disability support. The question of which ‘Gateway Agency’ they would go to was raised by Alison Easton, Executive Officer at the Ella Centre in Sydney’s inner west and chairperson of the Younger Onset Dementia Association.
Ms Easton, who manages dementia services for both older and younger people, said that while older people with dementia didn’t want to be seen as disabled, their younger counterparts did not want to be referred to as ‘aged’ either.
“Disability services have the flexibility to be responsive and meet the needs of individuals with younger onset dementia who still want to be socially engaged within the wider community,” she said. “Whereas the aged care dementia services tend to be based on a more sedentary, centre-based model of care.”
“Very, very, very good question,” Commisioner Fitzgerald said, adding that the two inquiries had tried to work out a way the two systems could be combined, and decided it was not possible. “I need your advice; we’re not sure.”
An editorial published in October last year by Alzheimer’s Australia expressed concern over the issue, saying “the decision of COAG to lump YOD under disability funding agreements was made without consultation with Alzheimer’s Australia, and there is concern as to how much research was done into whether this was the best option.”
Cashing out payments remain a good option for younger people and carers. The evidence for the value in caring for vulnerable older people is arguable. Most of the rural older people I deal with are vulnerable.
Alzheimers does not have a good reach into remote and rural areas and I wonder how they can speak on behalf of these people.
Where young people with dementia should sit remains vexed issue as from a community service element there is some value in being linked in with people your same age. However there is great value in being linked in with people with the same disease set. Surely a good argument for flexible funding & service provision.
What we need are service options with clear protections for those vulnerable people and a greater emphasis on ensuring services have requirements on them to meet their needs in funding arrangements.