Has Support at Home forgotten about Dementia?

Opinion

4 Feb

5 minute read

Despite all the discussion and commentary about details in the Support at Home program information, something is still niggling at me…

That thing is dementia.

Did you realise there is zero reference to dementia in the Support at Home Handbook, FAQs and webinars? And, the only HCP Supplement to be discontinued in Support at Home appears to be the Dementia Supplement!

How can this be?

67 per cent of people living with dementia in Australia live in the community
Dementia is one of the most significant high-impact and high-prevalence conditions for people receiving home care packages
It’s a focus question used by ACQSC Quality Auditors dedicated to risk-assessing how providers support consumers living with dementia
Home care packages have had a standalone Dementia Supplement since 2013
Dementia is specifically referenced 39 times in the Strengthened Standards provider guidance.

The omission of dementia in the Support at Home program is, to me at least, an elephant in the room and no one seems to be talking about it. We are left to speculate and make assumptions in the absence of any mention of dementia to date.

Dementia and Cognition Supplement in Home Care Packages

This supplement provides additional funding in recognition of the extra costs of caring for people with cognitive impairment associated with dementia and other conditions.

I hope I’m not wrong, but I expect those receiving the dementia supplement will have that additional funding grandfathered over to their Support at Home quarterly budget (though this detail has not been specifically articulated by the department). We all need to have this confirmed one way or the other.

But what about all the new entrants coming our way? Why is this the only supplement that is not making the leap from one program to the next?

Care Management

These extra costs and additional care needs of people living with dementia are not going to reduce in Support at Home. And to top it off, providers will have to manage these complexities with a reduced 10% Care Management budget.

The reduction in care management funding is where we will see this impact the most from a consumer perspective. There are five other vulnerable consumer cohorts pegged for additional care management funding, but people living with dementia are not one of them. Again, how can this be?

Some of you might ask why it matters whether it’s in the Handbook or not? For context, let’s acknowledge that providers use the HCP Operational Manual constantly. Some say they refer to the Ops Manual almost daily. If dementia is not referenced in the S@H Handbook, we risk it being overlooked by providers as they use the new Handbook contents to plan how Support at Home is going to look in their organisation.

Most of us focus on what is in front of us, so an omission such as this is sure to influence what providers are thinking about (or not) for the next few months ahead.

The relationship between the Strengthened Standards and the Support at Home program guidance is critical. Providers are audited on how well they implement the Standards, but if the program handbook doesn’t guide your practice, then what might this mean for people living with dementia and their carers? The expectations and outcomes in the Standards are crystal clear when it comes to operationalising a model of care that is best practice for dementia care and support.

Where is the money going?

I highly doubt that the omission of the Dementia Supplement is an oversight by the department. So, this begs the question, to where is all the Dementia Supplement funding going to be diverted? If there is no more standalone Dementia Supplement in Support at Home, what is happening to the amount currently set aside in the government budget? And we’re not talking about ‘small change’ here!

The Australian Institute of Health and Welfare (AIHW) reported that $550 million was spent on providing the Dementia Supplement to people living with dementia receiving home care packages in 2020-21[1]. You can be certain that this figure has increased since then. This was four times the amount spent on all the National Dementia Support programs and initiatives combined, which only goes to show how important this supplement is on an individual level for people using our home care services.

System failings

If I’m being honest, I think there have been some failings in the way the Dementia Supplement has been implemented by providers and evaluated by the government.

The supplement is not tied to outcomes so there’s no incentive for providers to target supports and services for best-practice dementia care, and from a department and regulator perspective, there is no consistently accepted way of demonstrating that the additional funds are being utilised to improve the lives of the people for whom they are allocated.

However, removing the Dementia Supplement from the program moving forward is not the answer, because it is the people living with dementia and their carers that will ultimately miss out on what could, and should, be a valuable additional source of funding to support them to live at home for longer with this progressive disease.

Instead of completely eliminating this supplement for new S@H entrants and unfairly benefiting those who are already receiving it, I believe the Dementia Supplement should continue as a standalone supplement for all. This supplement must come with clear expectations for transparency and defined outcomes for every individual receiving it.

This means:

A dementia care plan with specific goals and actions related to the issues that most impact the person living with dementia

Carer goals which include referrals and assistance to explore relevant support services and payments

Better uptake of technology and other supports designed to improve the quality of life for all involved

Referral pathways for consumers and families to Australian-based, dementia-specific education and supports such as those offered by Dementia Australia, My Dementia Companion and Dementia Doulas Australia.

The Single Assessment Service (SAS) has a very big role in ensuring the current HCP and new Support at Home programs can meet the needs of people with dementia. Their assessments and subsequent recommendations need to be much more targeted to the person’s needs to give providers specific guidance and a mandate to act upon and implement what’s needed, specific to their dementia care.

According to the Government’s National Dementia Action Plan 2024-2034, we are already not doing enough with what we have to support the needs of people living with dementia. We can do better, but we need the Department to be open and transparent about their plans to address the needs of people living with dementia under the new Support at Home program.

Tell us your thoughts…have I missed something here, or is this the next big piece of advocacy-in-waiting?

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Anna Millicer

Anna has spent the last 30 years in just about every area of the home care sector. With a foot firmly in both camps, she is great at aligning consumer and provider needs (no easy feat). Her relatable style for turning complex topics into consumer-friendly content have contributed to the success of her award-winning Home Care HQ newsletter.