October 2015
IT’S NOT WHAT YOU SAY, IT’S HOW
YOU MAKE ME FEEL
Home care and residential aged care, from the carer’s perspective
By Anne Fairhall, Dementia Carer/Consultant/Advocate/Speaker
My husband developed Younger Onset Frontal Temporal Dementia 25 years ago, aged 51. He is now 76.
I home cared him for 10 years supported by an EACH-D and later a ‘pilot’ CDC package. He required
residential care five years ago when my health failed... CONTINUED ON PAGE 3
In this issue
Message from the CEO
A new Minister for Aged Care
It’s not what you say, it’s how
you make me feel
Updated Aged Care Complaints
Scheme Guidelines now available
Our use of palliative care services
has doubled over the last decade
Updated one-day workshop on
Making the most of complaints
Practices and processes guide focus on expected outcome 2.4
Service user reassessment
Putting consumers front and centre
Legal implications of consumer
directed care
MESSAGE FROM
THE CEO
W
e are preparing to announce the 2015 Better
Practice Awards at our Better Practice
conference in Brisbane. If you would like to
attend Better Practice Brisbane, visit our website for a
list of all the speakers and to register online.
We have a number of new and exciting projects almost
ready to announce. Stay tuned for more information.
If you would like to receive regular updates, send an
email to [email protected] and we’ll add you to
our mailing list.
The Brisbane conference is the last one of the series
for the year, which has seen record numbers attending
and our feedback so far tells us that delegates have
enjoyed listening and engaging with the speakers,
networking with like-minded colleagues and coming
away with renewed enthusiasm and a bag full of ideas.
The Hon Sussan Ley MP has been appointed Minister
for Aged Care. This is in addition to her responsibilities
as Minister for Health, and Minister for Sport. I look
forward to working with the Minister into the future.
Nick Ryan
Chief Executive Officer
Work is well underway planning for the 2016 series
of conferences. Dates and locations are listed on our
website. We will have more information on the keynote
speakers and themes in the coming months.
A NEW MINISTER FOR AGED CARE
T
he Hon Sussan Ley MP has been appointed as Minister for Aged Care. This is in addition to her
responsibilities as Minister for Health, and
Minister for Sport.
In marking her appointment, Minister Ley
said: “I believe that we can support older
Australians – and indeed their carers –
better. A key factor in this support is how
our aged care services integrate and
complement our health services.
“Bringing the aged care portfolio to sit
alongside the Ministries of Health and Sport
will complement our integrated health system.
We know aged care plays an important role in
the overall health system and this move will
benefit all Australians, particularly those over
the age of 65.
She then went on to say: “We need to
ensure that not only does our aged care
sector support the needs of those currently
accessing services – it must be ready for the
next generation of Australians.”
Quality Standard | ISSN 2204-437X (online)
Visit our website to add your email to our mailing list – www.aacqa.gov.au
Send us an email if you have a story – [email protected]
from the Australian Aged Care Quality Agency
2
IT’S NOT WHAT YOU SAY, IT’S HOW YOU MAKE ME FEEL (CONTINUED FROM PAGE 1)
D
ementia creeps up slowly, sometimes quickly,
with small and subtle changes in behaviour and
communication. Everyone’s journey is unique and
takes a different trajectory. It is always stressful.
Suitability of one type of care over another depends
on a number of variables, e.g. physical, emotional and
administrative/organisational abilities of carers and
wishes of the person with dementia.
 Greater transparency and input to how CDC funds are used
 ‘Consumer driven’ not ‘provider driven’
Disadvantages
 Carers/people living with dementia cannot sit back and leave service arrangements to others
 More responsibility and administrative demands on carers/families
Most people prefer the idea of home care for loved
ones but it requires sustained carer commitment and
places great demands on family carers when behaviours
become unpredictable and 24/7 care is required.
 Vulnerability to carer illness/injury
Residential care options are difficult too particularly
if timing is forced rather than chosen. Emotionally
adjusting to a new environment including separation
from life-long partners brings about feelings of guilt,
deep sadness and frustration …… a compounding grief!
Benefits
Whether home caring on a CDC package or adapting
to unfamiliar residential aged care protocols, most
people, their families and loved ones struggle to adjust.
A person with dementia is often unable to comprehend
or accept the implications of their situation or the strain
it places on others.
 Accredited standards of care
CDC Home Care packages were designed to provide
tailored support, flexibility and transparency for people
living with dementia.
A fine goal, but carers are often too busy and
overwhelmed to properly research and understand what
CDC offers and how it works, i.e. entitlements, providers,
options, rights and responsibilities. People living with
dementia and their carers are therefore vulnerable to
misinformation from service providers. Independent
knowledgeable advice should be sought.
Consumer directed care, from a
carer’s point of view
Benefits include
 Negotiated agreements facilitate more flexible/
tailored packages to support varying and
progressive needs
 Choice of service provider/s based on cost and quality of service not automatic allocation to
a nominated service provider
from the Australian Aged Care Quality Agency
Residential aged care, from a carer’s
point of view
 Shared care - relieves exhausted or unavailable home carers
 Care plan oversight by trained professionals
 Safety and security (assumed)
Disadvantages
 Cost!
 Variable quality – staff and services
 Time needed to adapt to group living and different cultural standards eg. food, grooming, meal times, surrounding aesthetics, smells, freedom, actions of others…..
 Loneliness and boredom - separation from loved ones, their love and warmth
 Loss of privacy, freedom and ‘one-on-one’ attention
 Communication/difficulty understanding others, particularly for those with cognitive and hearing impairment
Whether care is provided at home via CDC or in
residential care, respect for the individual and use of
body language matters... “It is not what you say, it is
how you make me feel”
About Anne Fairhall
Before rearranging her life to become her husband’s
full time home carer, Anne had been a senior corporate
executive with national responsibilities, Managing
Director of her own OHS consulting business and
served on many boards and advisory committees.
She originally trained as a Registered Nurse and ran
operating theatres, prior to becoming an early adopter
of strategic Occupational Health & Safety management.
Continued over page
3
About Anne Fairhall (cont.)
Her focus now is on advocating for improved knowledge
and understanding about Dementia, its varying types
and stages, care options and how to live well within a
dementia friendly community.
Anne is a member of Alzheimer’s Australia (Vic &
National) Consumer Advisory Committees, is a member
of the Vic Dept. of Health Reference Group on
Quality in Public Sector Residential Aged Care... and has
many other interests.
Anne Fairhall spoke about her experiences with home
care and residential aged care at our Better Practice
Launceston conference this year. You can contact Anne
via email: [email protected]
UPDATED AGED CARE COMPLAINTS
SCHEME GUIDELINES NOW AVAILABLE
U
pdated Guidelines for the Aged Care Complaints
Scheme are now available. The new Guidelines
outline how the complaints management
framework operates and the procedures officers follow
when they receive and resolve complaints.
The Guidelines have been updated to reflect changes to
legislation, policy and procedures.
This includes information about the management of
complaints in relation to Flexible Care and the National
Aboriginal and Torres Strait Islander Flexible Aged Care
Program (NATSIFACP).
It also includes information about the introduction of the
Commonwealth Home Support Programme (CHSP).
The updated Guidelines are available from the
Department of Social Services website.
UPDATED ONE-DAY WORKSHOP ON
MAKING THE MOST OF COMPLAINTS
O
ur popular one-day workshop on Making the
most of complaints is receiving an overhaul
after the announcement of updated guidelines
for the Aged Care Complaints Scheme, and the
introduction of new national and international standard
on complaints management and customer satisfaction.
Making the most of complaints will continue to be
facilitated by Steve Aivaliotis, expert mediator and
director of Proactive Complaints Management.
Stay tuned for new dates and locations to be
announced shortly.
The content is also being revised to ensure it is
applicable to both home care and residential aged
care providers.
from the Australian Aged Care Quality Agency
4
PUTTING CONSUMERS
FRONT AND CENTRE
When people lose the ability to have choice over their lives it
makes them unhappy and can make them sick. Based on large
comparative studies we know that choice and autonomy is
central to overall health and wellbeing.1 There are implications
for how we can enable older Australians who receive care to
participate in decisions that affect them. The evidence is clear
that doing so will increase their overall health and wellbeing.
Laura Carstensen (a psychologist from Stanford) describes
people getting happier as they age, having lower anxiety,
less depression. The exception to that is when they become
institutionalised—they feel like they are in prison.2
In health and aged care services - quality has been
traditionally decided by experts and measured and ‘certified’
by a government authority. This is now being challenged.
The power of consumers and influence of consumer opinion
has surged, enabled by accessible digital and media
platforms. Consumers are now more empowered to
determine for themselves what constitutes quality; and
more adept at accessing and sharing information about the
quality of such services.
We are seeing a shift from the authority of experts to the
authority of experience.
It is important that consumers are involved in the development
of the new standards for aged care services. They should also
have a say in the ways they can engage and communicate
their expectations and experience of quality.
The Government is moving to help the aged care industry
develop a more sophisticated definition of quality, to ensure
the expectations of older Australians are met or exceeded.
Consumer choice is at the centre of the Aged Care Statement
of Principles developed by the Aged Care Sector Committee
and the Australian Government to guide improvements in the
aged care sector.3
The challenge for providers will be to demonstrate how
the service recognises and meets individual needs and
preferences. This will undoubtedly be challenging and require
a shift in thinking.
1
Marmot, M. G.; Smith, G. D.; Stansfeld, S; Patel, C; North, F; Head, J; White, I; Brunner, E; Feeney, A (1991). “Health inequalities among British civil servants: The Whitehall II study”. Lancet 337 (8754): 1387–93. doi:10.1016/0140-6736(91)93068-k
2
Atul Gawande on facing death, ABC Health report, Monday 22 June 2015 4:43PM. edited transcript of a conversation between Atul Gawande and Norman Swan at the Sydney Writers’ Festivalhttp://www.abc.net.au/radionational/programs/healthreport/atul-gawande-on-facingdeath/6564010
3
Aged Care Sector Statement of Principles, Aged Care Sector Committee and the Australian Government (Feb 2015)
from the Australian Aged Care Quality Agency
5
LET’S TALK
ABOUT
QUALITY
“At home we have the right to smoke, have pets, get fat
and have sex if we want; but in aged care facilities
we become captive in a controlled environment where
we are ‘protectively disciplined’… Shouldn’t we be able to
have the small aspects of our life considered? Whose
schedule is it? Whose choice? I might like to sleep until
eight or nine and have soft poached eggs on toast for
breakfast. I’d like to think I could get out on the golf
course. I don’t want to conform to a set schedule and set
activities decided for me without my wishes and choices
being considered and I wouldn’t put up with it.” 4
Hammond Care’s CEO (and AACQA Advisory Council member), Dr Stephen Judd
http://www.australianageingagenda.com.au/2010/06/17/aged-care-denies-basic-rights-of-citizenship/
4
For example
Nancy wants to spend less on personal care and
more on support to attend carpet bowls with her
group of friends in the community. Her aged care
service has found a way to enable this choice and
support her priorities to attend the community
centre weekly. Service delivery meets her own
goals, focused on what is important to her.
What is your view?
 From a consumer point of view, what do you
look for in choosing an aged care service?
 How do you measure whether one service is better than another?
An excerpt from the discussion paper Let’s talk about
quality – Developing a shared understanding of quality
in aged care services. You can read the full report on
our website, and make comments through our online
feedback channel.
from the Australian Aged Care Quality Agency
6
OUR USE OF PALLIATIVE CARE SERVICES HAS
DOUBLED OVER THE LAST DECADE
A
report from the Australian Institute of Health and
Welfare has shown that palliative care-related
hospitalisations have risen by over 50% over the
last ten years.
There were almost 62,000 palliative care
hospitalisations in 2012-2013. The report shoes that half
of these were for patients with cancer. For certain types
of cancer, palliative care played a particularly prominent
role in patients’ hospital care.
An important element of palliative care is prescription
medication, with more than 51,200 palliative care-related
prescriptions provided to almost 25,900 patients in
2013-2014. Most often dispensed medications were
laxatives, analgesics and anti-epileptics.
PRACTICES AND PROCESSES GUIDE
Standard 2 of the Home Care
Standards requires providers
to demonstrate that care
recipients can access the
provider’s services, if they
are eligible for and require
the service.
Practices and
processes guide
This Standard also requires
that each person accessing
the service receives
a comprehensive and
transparent assessment to determine their needs and
choices and develop plans of care in partnership with the
care recipient and/or their representative.
August 2015
For example this could include:
• Assessment by appropriately skilled and trained staff
or volunteers
•
Use of validated assessment, observation charts and
risk assessment tools
•
Clinical assessments are undertaken by appropriate
qualified staff
•
Regular consultation with care recipients or their
representatives and others (medical officers and
health professionals about current care needs and
preferences)
•
Evaluation of reassessment processes to ensure
care and service needs remain current to actual care
recipient needs, choices and preferences.
www.aacqa.gov.au
Let’s look at expected outcome 2.4 Service user
reassessment.
Each service user’s needs are monitored and regularly
reassessed taking into account any relevant program
guidelines and in accordance with the complexity of the
service user’s needs. Each service user’s care/service
plans are reviewed in consultation with them.
The considerations for this expected outcome
may include:
 How does your service ensure ongoing
reassessment of the care recipients’ care and
service needs and also ensure they are conducted
and documented by appropriate staff or volunteers?
from the Australian Aged Care Quality Agency
 How does your service review care plans
and update them following reassessment and
communicate changes to relevant staff, volunteers
and others?
 How do you ensure care recipients are receiving
care and services according to their choices and
preferences?
Further considerations on practices and processes
for 2.4 Service user reassessment can be found in the
Practices and processes guide. http://www.aacqa.gov.
au/for-providers/home-care/practices-and-processesguide
7
LEGAL IMPLICATIONS
OF CONSUMER
DIRECTED CARE
Home Care Today has undertaken a project to explore
the legal implications of the consumer directed care
approach to Home Care Packages. The aim was to
ensure a balanced and positive approach to duty of
care and dignity of risk that enables flexibility of service
delivery within legal parameters.
As a result of the project a number of resources have
been developed:
Consumer Directed Care, legal issues, positive risk
taking and managing organisational uncertainty
This paper summarises the findings of the project. It
considers how uncertainty may lead to organisations
becoming more risk averse. Given that CDC aims to
increase consumer control and flexibility in service
provision, this requires a positive approach to risk
taking. The paper lists some strategies to assist
organisations to balance their duty of care with the
dignity of risk for consumers.
Practice Guidance on Legal Issues in CDC has been
produced as a result of the findings of the Legal Issues
Project. The guide contains:
 an overview of the legal issues research
 definitions of key legal terms and a suggested decision-making process for dealing with legal and ethical issues
 a series of practice guides on the key legal issues raised in the research  references to relevant literature and resources.
Home Care Packages: The provider’s guide to
preparing agreements incorporating consumer
directed care
This guide has been prepared to assist organisations to
develop or review their current agreement. The guide
provides the legal parameters, suggestions for ways
to develop and/or review the agreement and specific
information about special groups and how to meet their
needs. The resources are available on the Home Care Today
website - www.homecaretoday.org.au/provider/
consumer-directed-care/legal-issues-project
from the Australian Aged Care Quality Agency
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