In-home and community care

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Many hundreds of thousands of older and infirm Australians elect to receive in-home and/or community care in preference to moving to an aged care facility, in part because it gives them more freedom.

If you or your loved one/s are in this situation – or you provide care in the community – we invite you to explore and contribute your observations and ideas in this section of the Your Say on Aged Care website.

If you or a loved one has been in an aged care facility – or you have worked in one – we invite you to explore this section and have Your Say on in-home and community care in general or via any of the following sub-topics:

Care recipients’ rights and responsibilities
Medication management
Meals (including fluids)
Communication challenges
Companionship
Personal care
→  Hygiene, sanitation
Personal safety & security

→  Financial abuse
→  Falls, physical harm, abuse
→  End-of-life and palliative care
→  Dying at home
Accessing home-care packages

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Privacy statement

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Older People Speak Out (OPSO) – the publishers of the Your Say On Aged Care website – will only collect, store, use, disclose and destroy personal contact information in accordance with the Privacy Act 1988.

Schedule 1 to the Privacy Act 1988 contains the Australian Privacy Principles which regulate the way in which organisations such as OPSO can collect and use personal information.

The Your Say On Aged Care Privacy Policy below sets out the way in which OPSO complies with these principles.

Privacy Policy

Any time you complete a submission to the Your Say On Aged Care website – via the provided online or downloaded form – you will be prompted to provide personal and contact information.

Whether submitting on your own behalf, or on behalf of another individual who no longer has the access, ability or capacity, you will be required to provide personal and contact information relating to you as well as any individual/s for whom you may be acting.

Personal and contact details will be kept confidential, unless – in specific cases – you otherwise direct or grant permission for its release.

This personal and contact information may be used by OPSO to clarify or verify details provided.

Personal information will not be shared with a third party unless it is lawfully requested or there is an immediate risk to one or more individuals.

On the form, you will be given the option to receive communication from OPSO in the future and invited to become a member. You may accept or decline either offer.

In line with legislative requirements, OPSO will not use your details for communication unrelated to the Your Say On Aged Care project without your express permission.

OPSO will only use information you provide to external parties where such use is lawful.

If accidental or unauthorised use – or disclosure – occurs, OPSO will act quickly to rectify and remedy the situation.

All reasonable steps will be taken by OPSO to protect your personal and contact information from misuse, interference, loss, unauthorised access, modification or improper disclosure.

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Your personal information and contact details will be retained separately – for the duration of this project – from the descriptive content you provide that may be used for publishing online.

With any content you submit that is intended for publication, you may elect to remain anonymous or to use one or more suitable pseudonyms, however, you will be required to indicate the region from which the post is being made. This detail will be included with your published content.

At any time, you may request to access personal information held by OPSO about you or the person/s for whom you are acting and you may request correction of any inaccurate details.

The lifespan of the Your Say On Aged Care website is intended to be limited, with its closure likely to be at the end of 2018, unless otherwise required or notified.

At the time of the website’s closure, all personal information provided will be destroyed unless you have given permission for your details to be used for other purposes (such as receipt of OPSO emails or requested OPSO membership).

Your say on aged care form

PLEASE READ BEFORE COMPLETING FORM FIELDS:

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      YOUR SAY ON AGED CARE FORM

 

Copyright

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© Older People Speak Out 2018

While OPSO is the author of this website, it is immediately placing its textual content in the public domain.

Text from this site may be reproduced, with proper acknowledgment of the source, viz., Your Say on Aged Care website (yoursayonagedcare.com.au).

However, the copyright on images and illustrations on this site remains with the photographer and may not be reproduced without written permission which can be requested by contacting him via email.

Related publicity

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Residential care

Understaffing/Ratios

Medication management

Communication

Personal care

Falls prevention

Dementia care

Meals

Mobile services

Intrusions/privacy

Abuse (bullying/assault/financial)

Companionship

Respite services

Deaths

Homelessness

In-home services 

Making a complaint

Costs

Policy and services

NDIS

Resources

Australian Nursing and Midwifery Foundation

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Dementia advice and carer resources

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Dementia advice and information

Caring for someone with dementia can be complicated, uncertain and sometimes lonely, especially in the early days.

Dementia Australia (formerly Alzheimer’s Australia) publishes this helpful online portal for carers of people with dementia.

It features advice, links to support services, education materials, help sheets and other resources as well as a definition of dementia, its symptoms, causes and memory loss.

The organisation also has a National Dementia Helpline (1800 100 500).

It also offers specific, State-based information and services (select your state from the left-hand navigation panel).

Resources for carers

Carers who provide unpaid care and support to family members and friends who have a disability, mental illness, chronic condition, terminal illness, an alcohol or other drug issue or who are frail aged often need information and advice.

Carers Australia is the peak body representing Australia’s carers. It advocates on behalf of carers to influence policies and services at a national level.

It also serves the carers of older and infirm Australians as well as providing support for younger carers and those who care for people from Indigenous as well as culturally and linguistically diverse backgrounds.

Working through its state and territory associations, Carers Australia also provides a wide range of counselling, advice, information and registration services. These include:

It also provides helpful assistance with navigating the NDIS.

Carers Australia runs a 24/7 helpline – 1800 242 636 – and works collaboratively with partners and its member organisations, its network of state and territory Carers Associations, to deliver a range of essential national carer services.

Have your say on aged care-2

Where to register complaints about aged care

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All approved aged care providers – residential, community and in-home – should inform care recipients of their rights as well as the ways to lodge complaints.

The first port of call should be the provider. However, if complaints are not being dealt with at that level, they may need to be escalated.

For the past two years, the independent Aged Care Complaints Commissioner has been receiving notifications after the care people have received in residential, in-home or community care – and communication around that care – has broken down.

Those complaints have also come when a person has tried to address concerns but does not feel heard by their provider.

The Commissioner has emphasised the importance of complaints, saying they are “great opportunities to improve care” and are a positive.

Service providers are also encouraged to welcome complaints, “treating them as part of the opportunity to improve their service”.

Complaints can be made by calling the Commission’s national 1800 550 552 number or online via its website (at www.agedcarecomplaints.gov.au).

With elder abuse an issue nationally, each state and territory provides information about abuse and abuse prevention as well as useful contacts and options for getting help. The MyAgedCare website indicates these include:

State/territory Organisation or resource Contact
Australian Capital Territory Older Persons Abuse Prevention Referral and Information Line (APRIL) 02 6205 3535
New South Wales NSW Elder Abuse Helpline 1800 628 221
Northern Territory Northern Territory Police 131 444
Queensland Elder Abuse Prevention Unit 1300 651 192
South Australia Aged Rights Advocacy Service
Alliance for the Prevention of Elder Abuse
08 8232 5377 (Adelaide)
1800 700 600 (rural)
Tasmania Tasmanian Elder Abuse Helpline 1800 441 169
Victoria Seniors Rights Victoria 1300 368 821
Western Australia Advocare Inc. 1300 724 679 (Perth)
1800 655 566 (rural)

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Resources

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Whether you are seeking further information for yourself, a family member or someone for whom you are caring, this section provides links to:

If you know of other useful resources, please let us know at secretary@opso.com.au so we can share them on these web pages.

Have your say on aged care-2

Policy areas

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There is a wide range of policies relating to the care of older and infirm Australians receiving services in aged care facilities and in their own homes.

Additionally, older and infirm Australians who are under the age of 65 years may be eligible, following assessment, for support via the National Disability Insurance Scheme .

Public, private and not-for-profit residential aged care facilities must meet a standard set of quality indicators for the services they provide.

While the Federal Government is centrally responsible for setting national aged care policy and procedures, all states and territories assist older and infirm citizens and their families and carers to identify their care options.

Conversation starter

Have you – or someone you have cared for – found change is needed in policy relating to either residential or in-home care? Is that change critical at the national, state or regional level? Or is the change more urgent at truly local level, i.e., in an aged care facility or in your immediate community?

Have your say on aged care-2

Costs relating to in-home care

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The Australian Government subsidises both Commonwealth Home Support Packages and Home Care Packages and publishes information about those costs.

However, if you can afford to, you are expected to contribute to the cost of your care.

This web page notes that there is a fee for each service delivered under the CHSP and the amount you contribute depends on your income and the type and number of services you require.

You and your service provider will discuss and agree on the rate before you receive any services. Contact your service provider to find out specific costs.

Conversation starter

Have you or someone for whom you care applied for either – or both – a Commonwealth Home Support Package or a Home Care Package? What were your experiences with this process? How long was the wait for the package to begin? What support was the person needing care while they waited for their package? Was the support given sufficient to sustain the person in their home? Did family, friends or neighbours play a role in this person’s care at any point? Did the person remain at home?

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Accessing home-care support

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The Federal Government has two in-home care programs for those who have been assessed as eligible for support:

  • the Commonwealth Home Support Services program, which provides entry-level assistance around the home
  • Home Care Packages, a four-stage extra support program that provides a set amount of funding for recipients or their carers to choose whichever external services needed at each stage under a “consumer-directed” care model.

Both are desperately in need of review and increased funding if they are going to meet the needs of a growing ageing population.

As of December 2017, more than 100,000 people were already waiting – sometimes more than a year – to receive approval for their Home Care Package.

In the meantime, those on waiting lists were receiving services at levels well below that which they had been assessed as needing.

According to a report in the Sydney Morning Herald, this has led to some older and infirm Australians going into residential aged care much earlier than expected.

Conversation starter

What have been your experiences with accessing in-home support and/or home-care packages? How has that process unfolded? Are you and your loved ones satisfied with this? What would you change?

Have your say on aged care-2

Dying at home

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While around 70 per cent of Australians say they would prefer to die at home, the Sydney Morning Herald recently noted that the Productivity Commission has reported that tens of thousands of Australians are instead dying in places that do not reflect that choice or their care needs.

As a health economist writing for The Conversation website has discussed, provided symptoms can be controlled, most people at the end of life prefer to die at home, yet around half end up dying in a hospital.

But what are the concerns and decisions to be made? The ABC’s World Today program explored some of the key issues around dying at home.

Conversation starter

Have you experienced a death in the home? What support did you receive or give? What were the challenges? What were the positives? Would you want that for yourself or others?

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End-of-life and palliative care at home

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With only around half of Australians able to make their own end-of-life decisions, during Advance Care Planning Week the Federal Government launched a multimillion-dollar plan to help people talk about their end-of-life wishes and care plans.

This ABC AM segment hears from three experts who recognise the importance of Advance Care Plans.

While the number of palliative care services is growing across Australia, people in rural and remote areas still struggle to access end-of-life care.

And, according to the Aged Care Guide website, a new report released by the Australian Institute of Health and Welfare (AIHW) shows more people are accessing palliative care services in a hospital than ever before.

Meanwhile, access to good palliative care services remains largely dependent on patient location and socioeconomic status.

Conversation starter

What experience have you or your loved ones had with end-of-life issues, palliative care or Advance Care Plans? What positive things came out of that experience? What would you like to see change?

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Falls, trips, physical harm and abuse in the community

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With consequences of falls, physical harm or abuse including increased anxiety and fear of falling or being attacked again, increased functional decline, decreased independence, fractures, distress and even death, preventive steps are essential for older and infirm Australians.

One Curtin University study – reported on the Australian Ageing Agenda website – has shown that trained community workers can safely incorporate an 8-week falls-prevention exercise program into their existing services for those older and infirm clients who are at low or medium risk of falling over.

With just four hours of training, community care workers were able to deliver the falls-prevention program, leading to positive outcomes.

Conversation starter

What experience have you or a loved one who is still living at home had with falls, physical harm or abuse? How did that experience come to light? Who was able to assist and was a solution found?

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Financial abuse of independent elderly

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The Australian Financial Review reports that up to one in 10 older Australians has been financially abused, with adult children the most likely perpetrators.

It also highlights the role of “inheritance impatience” and misuse of powers of attorney authorities, with an increasing number of applications to revoke a power of attorney after concerns arising from actions by family members.

But financial abuse can come from other sources, too, as the ABC Online showed in its reporting on the recently opened banking royal commission.

Conversation starter

What experience have you – or someone you know or care for – had with financial abuse of an older Australian who is still living at home (i.e., not in an aged care facility?) Was there someone in authority able to intervene? What was the outcome?

Have your say on aged care-2

Personal safety and security in the community

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Sydney-based home care service Better Caring has a handy guide to home safety for the elderly and infirm.

Useful for older or infirm Australians and those who care for them, the guide covers:

  • warning signs that extra help may be needed
  • how to approach those conversations and accept change
  • assessing how much help is needed now and into the future
  • what home modifications may be essential or simply useful.

The guide also includes five essential tips to avoid falls and a home safety checklist.

Conversation starter

Have you – or someone you care for who lives independently – experienced personal safety and/or security concerns? Where did you turn for advice or help? Were you able to successfully address those concerns or rectify any vulnerabilities?

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Hygiene, sanitation and homelessness in the community

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Recently Mission Australia called for the Federal Government to build 60,000 additional social housing dwellings following the release of its 2017 report that showed homelessness is a growing problem for older Australians.

The report, Ageing and homelessness: Solutions for a growing problem, noted that the number of people aged over 55 years who are reaching out for assistance from specialist homelessness support services is continuing to grow, with older women particularly vulnerable to later-in-life homelessness.

Homelessness affects other areas of life, such as general and mental health, hygiene and ready access to proper sanitation facilities, issues that only become more pronounced the older the homeless person gets.

Even those still living in their own homes will sometimes require assistance with daily living tasks, including hygiene, showering and toileting, as the upswing in in-home support services shows.

Conversation starter

Have you – or someone for whom you care – experienced challenges with managing hygiene, sanitation or homelessness? Were you, or they, able to access assistance? How could the situation have been improved for them and others? 

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Personal care at home and in the community

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Recent figures released by the Productivity Commission show that, during the 2016-17 financial year, $17.4 billion was spent on aged care, with about 30 per cent of that figure spent on those older or infirm Australians wishing to live independently in their own homes.

According to a news.com.au report, that expenditure covers assistance with dressing and other daily living activities, transport, socialisation, installation and maintenance of home living aids such as hand rails and ramps, preparation or supply of meals, nursing and provision of medical devices such as walking frames, mobility scooters and motorised wheelchairs.

Yet one in three older Australians living at home say their needs are not being fully met, an even higher percentage than among those with a profound or severe disability.

Conversation starter

Have you or an older or infirm relative or friend living independently found sufficient support for personal care under the current Federal Government funding arrangements? Did you need – or were you given – assistance with accessing funding support for in-home services?

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Companionship in the community

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Whether older and infirm Australians get to meet up with friends, family or organised visitors is a big factor in reducing loneliness and isolation. In turn, say experts, this has positive flow-on effects for their mental health.

So much so that formal companionship programs – such as this one featured by ABC Online in New South Wales’ Hunter region, another highlighted by Triple J Hack in South Australia and a variety run around the country by Red Cross – are blossoming.

For others living independently, having a pet provides daily companionship. Sometimes, all it needs is a helping hand to make that happen, says Queensland’s Animal Welfare League which runs the Golden Hearts Seniors Pet Support Program.

Conversation starter

Have you – or someone for whom you care – found loneliness and isolation an issue? Was companionship able to be arranged? What issues made it easy or complicated?

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Communication challenges

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Hearing loss, cognitive impairment, disease and mental health challenges can all contribute to a breakdown in communication for older and infirm Australians.

While mishearing a doctor, nurse or carer is not uncommon for older adults or younger people with hearing loss or diminished cognition, it can lead to miscommunication of important clinical instructions that can lead to potentially serious medical or medication errors.

One study reported on the Aged Care Guide website found 43 per cent of adults aged over 60 years reported having misheard a doctor, nurse or both in a primary care or hospital settings. This can lead to misdiagnosis and potentially serious clinical mistreatments.

That study found better communication between medical practitioners and families could have prevented 36 per cent of medical errors.

However, there are things informed health practitioners and carers can do to ensure clearer communication.

Conversation starter

Have you or a loved one living independently had an experience where communication has broken down due to hearing loss? What happened? What were the consequences? Has anything been done to address this situation? Has this improved matters?

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In-home meals (including fluids)

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Poor or insufficient food and fluid intake in the elderly and infirm inevitably leads to a malnourished body.

Malnutrition is associated with a cascade of adverse outcomes, including increased risk of falls, pressure injuries and hospital admissions, leading to poorer quality of life and increased healthcare costs.

With up to 30 per cent of older people living in the community malnourished or at risk of malnutrition, this Australian Journal of Pharmacy article exposes 10 food and fluid intake myths for seniors.

It also advises how to eat healthily and maintain sufficient fluid intake to avoid malnutrition.

Conversation starter

Have dietary matters and/or fluid intake been issues for you or someone you care for who is an older or infirm Australian? What have been the consequences? Were you able to you seek professional advice from a dietitian or other health professional? Was the situation addressed satisfactorily?

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Medication management in the community

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Just like in other countries, medication errors are a problem in Australia, with an estimated 2-3 per cent of all hospital admissions medication-related.

This suggests at least 230,000 admissions annually in this country are caused by patients taking too much or too little of a medicine – or taking the wrong medicine – with the cost topping at least $1.2 billion. A good proportion of these patients are older and infirm Australians still living independently.

This recent article in a New York newspaper has five useful tips especially for those people receiving in-home or community care, and for their carers, to help prevent medication errors.

Conversation starter

Has medication management been a challenge for you or someone you have cared for? What were any consequences? Where did you go for advice? What was the recommendation? What did you learn?

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In-home and community care recipients’ rights and responsibilities

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Just in case you haven’t seen them before, there is a suite of rights and responsibilities for those receiving care in their own home that set out what is expected under the federal Aged Care Act 1997.

If you have a concern about these rights or responsibilities, the best agency to address those to is the federal Department of Health’s Ageing and Aged Care. However, if your queries are more about accessing aged care services for older or infirm people, you should visit the My Aged Care website or call 1800 200 422.

Conversation starter

Have these in-home care rights and responsibilities been spelled out to you or your loved one? Have you ever been witness to one or more breaches of these rights? What additional things could be added to these lists of rights and responsibilities?

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