Respite care viewed as ‘negative’, ‘risky’

Carers may not be accessing available respite services because of quality and safety concerns, the aged care royal commission has heard.

Carers may not be accessing available respite services because of quality and safety concerns and a perception that residential respite may be “negative and even risky”, the aged care royal commission has heard.

The Royal Commission into Aged Care Quality and Safety, sitting in the regional Victorian town of Mildura, will this week hear evidence focusing on respite care, as well as the toll that a caring role can take on carers.

Peter Gray

In opening statements on Monday Senior Counsel Assisting Peter Gray QC the commission the respite system in Australia is in need of reform.

He said a 2015 survey by the ABS found 58.9 per cent of carers hadn’t received assistance from organised services within the last 12 months and 86.2 per cent had never used respite care, including 55 per cent who said they didn’t need it and 10.8 per cent who said the care recipient didn’t want it.

“This still leaves a large number of people who would like respite but have never had it,” Mr Gray said.

“It also raises questions about why a very large group of primary carers do not wish to try it. Could this be because of concerns about its efficacy, its quality or even its safety?”

Mr Gray noted there were also “expert and anecdotal indications” that residential respite was “too often perceived as a negative and and even a risky experience”.

Ambiguity around purpose of respite

He said there was ambiguity around who respite was actually supposed to benefit – the recipient or the caregiver.

“It should of course benefit both and be for the overall sustainment and enhancement of the care relationship,” he said.

“In technical terms, however, the way the need for respite care is assessed may not adequately reflect this.”

Mr Gray said there is a range of government-subsidised services to support carers, but navigating the system is difficult and can act as a barrier to both accessing respite and maintaining the demanding role of carer.

He also said evidence suggested there may be “inadequate coordination” between the two key pathways to carer support, the Carers Gateway – which links carers to support services – and my Aged Care, used to find respite.

The evidence the commission will hear over coming days, he said, will suggest that opportunities have been missed and reform is needed, “particularly reorientation towards reablement of the elderly person using respite, and coordination of support services to allow carers to benefit”.

The figures on informal carers

Mr Gray said in 2015 there were 2.7 million informal unpaid carers, representing 12 per cent of the population. Of those, 420,700 were primary carers of people aged over 65.

In 2015 carers provided 1.9 billion hours of unpaid care according, to a 2015 Deloitte Economics report prepared for Carers Australia.

Caring is also a gendered issue, Mr Gray noted, with women making up more than 68 per cent of carers in 2015.

Last year, 2,522 residential facilities provided respite care and the use of residential respite care is increasing, with 2 million days accessed in 2017-18 an increase of 120,000 on the previous year.

CHSP services, including in-home, community day centres and cottage based respite, was provided to more than 46,000 people last year by 556 providers.

Mr Gray told the commission that respite is also “theoretically” available through the home care package program under CDC. However, there were often are insufficient funds for respite once other services have been paid for, not to mention the long waiting times for a high care package.

It was a “glaring gap in the data” that the health department doesn’t hold figures on respite accessed via home care packages, Mr Gray said.

Struggle to meet demand

Mr Gray said as Australia’s population aged the number of available carers would not keep up.

“These demographic changes result in more people who need care however the number of people able to provide this care is anticipated to rise at a much slower rate,” he said.

“There’s a very real challenge in supporting the growing number of people who choose to age at home with decreasing numbers for family and friends available to provide.”

He said while many chose to take on the role of carer, the task could have detrimental effects on their health, wellbeing and financial security.

“Over time not only might the carer be affected, but so might the quality of care that their loved on receives,” he said.

“If informal care becomes unsustainable permanent entry into a residential aged care facility will probably result, at significant public cost.”

Read also from the Mildura hearing:

Regional carers hub faces closure as funds dry up

Royal Commissioners moved by carer’s account

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Tags: aged-care-royal-commission, dementia, news-4, peter-gray-qc, respite-care, royal commission into aged care quality and safety,

7 thoughts on “Respite care viewed as ‘negative’, ‘risky’

  1. We recently accessed short term respite for my mother to give my sister (carer) a break. While it’s clear that temp residents are treated differently to long stay residents, the facility was accommodating and collaborated with us to get my mother to radiation treatment over 2 weeks. I can’t fault the facility, It was neither a risky nor a negative experience for my mother in terms of respite care, just part of the continuum of care for someone choosing to live at home. I do recognise that carers and care-recipients view respite care as a step to permanent care which can be problematic.

  2. Thank you Caroline – as a CRCC that works hard to ensure carers receive the respite and assistance they need to continue in their caring role it is really disappointing to read ‘hypotheses’ being thrown out using such negative language. We all do our best to support carers and care recipients despite lack of certainty and ever changing funding and service design. Give facts by all means Mr Gray – but maybe leave the emotive hypotheses out?

  3. I live in country SA. The only break we get is 1.5 hrs of social support once a week which is hardly worth the time it takes to prepare my mother for that outing. I have been told that respite is only available in the hospital as the respite bed in our RACF is being used for a permanent resident. My mother is mid stage dementia and knows what a hospital is for (not to mention that this is a “locked” ward because of long term residents who wander) and this is definitely not an option for me (or her) have respite in that environment

  4. The article fails to mention that many aged care homes now shy away from Respite and prefer to take permanents only. This is often due in my experience to the amount of paperwork and compliance required and the risk that the respite person may be aggressive and unsettled or very demanding, putting a huge strain on already stretched staffing. It can be risky for providers to take Respite and subject their nurses to a mountain of paperwork for a short term person. The auditors have a reputation also for targeting Respite admissions, and if there is any missing paperwork for instance then they will jump on the nursing home, I know for many providers this is all not worth it, hence many nursing homes have no availability, or 1 Respite bed booked our for months, or turning their 1 Respite bed into permanent. Better financially and less risk.

  5. Has Mr Gray ever set foot in a residential facility? We can really do without the hypotheticals and posturing.
    The RC has put every single RACF under more pressure than you could possibly imagine. The good ones are getting lumped in with the others and the red tape is killing the industry. I can well understand why operators would walk away. The RC needs to hear some “we do it well and and we do it right” stories, not just all the negatives. Small community facilities will close if things don’t change. And more often than not, they’re the ones that are part of the fabric of a regional or rural community for a very long time.

  6. Great idea…a Royal Commission into excellent residential care…It’ll be a short one.

    If you’ve been following the RC you’d know there’s already been considerable attention given to what good care and improved practices look like.

    It’s naive and disingenuous to keep chanting the old “..just a few bad apples” line; the growing list of sanctions, complaints and non-compliance is testament to our shabby system of unskilled staffing and clinical ineptitude.

    If anything, the commission needs more personal stories from families and staff on the floor…and way less from all our aged care experts, academics who have never provided direct care and individuals shouting about just how good THEY are.

    Do our elderly a favour and keep your indignation to yourself. The sector is not represented by a couple of rural homes that, in your opinion, might be doing the right thing.

    Have a look at the sanction archives…even though the published list is incomplete and far from comprehensive, there’s lots of long-term regional facilities there.

    This is a national issue, not just your backyard.

  7. I am hoping that the Royal Commission at least highlights that nationally the industry is struggling, the homes that I have read about who have been smashed with non compliance and sanctions were doing their best with what they had, trying to do more with less due to lack of funding and slowly going out of business. The lack of Registered Nurses wiling to work in aged care now is chronic, and without those senior clinical staff you are destined to fail. The problem then is that when the highly paid and arrogant advisors step in to ‘fix’ the place, any staff you have left just leave and the place goes even further backwards, sinking into the abyss ,often never coming back to the surface. Sanctions are a death sentence often for these struggling businesses. Very unfair system, why anyone would invest or get involved in residential aged care now is beyond me. Like the car manufacturing industry, let’s hope it doesn’t disappear!

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