Age Friendly Shopping Centres

According to the World Health Organisation, ‘making cities more age-friendly is a necessary and logical response to promote wellbeing and contributions of older urban residents and keep cities thriving’. Where cities are age friendly they tend to be friendlier for all age groups as their direct needs are frequently shared with other groups, particularly people with young children and those with disabilities.

Canberra has been accepted as an age-friendly city. Living up to the WHO ideals should result in a friendlier and more relaxing environment. In shopping centres this is good for business and therefore profits.

These needs include:-
• Having appropriate seating at regular intervals. Appropriate seating includes the correct height, and with arms, to enable older shoppers to sit down and get up easily.
• Shopping centre seating needs to be user friendly, with seats facing each other to enable interaction between users.
• Individual stores which involve customer queues, such as banks, should be encouraged to provide seats on their premises.
• Many grandparents today act as baby sitters. Adequate seating near play areas is necessary to attract these customers to centres.
• Car parks should be easily accessible to shopping centres, not separated by busy roads, as at the newly built Casey centre. This is a government responsibility but centre managers should have input into such planning. Where access to centres is limited or hazardous, customers are discouraged.
• Underground car parks should be appropriately lit, to accommodate older people who often have less efficient eyesight.
• In toilets, hooks behind doors, designed to hold handbags etc. should be at a suitable height for older people who tend to be shorter.
• Shop keepers, particularly in supermarkets, should be encouraged to store goods purchased by older customers on shelves which are at a height accessible to this group.
• In centres which have facilities for entertainment, the interests of the elderly could be taken into consideration.
• Safety within centres should be paramount for all shoppers, including the elderly. Where safety is compromised, such as with ‘Wet floor’ signs, older people, for whom falling is a permanent hazard, are automatically discouraged from patronising the centre. The signs have no legal consequence and should be replaced by a non-slip flooring surface.
• Moving staircases connecting floors should be appropriate for use by older shoppers. Those recently installed in the Gungahlin shopping centre extension are quite hazardous for older people, particularly for those with trolleys.

Older people form an increasing percent of the population and their needs in shopping centres should be considered, particularly as these are often paralleled by other groups. Attracting customers and providing an environment in which they are relaxed and comfortable is good for shopping centres and is therefore good for business and profits.

Audrey Guy
HCCA Member

Report from a Consumer Rep - Online feedback for users, carers and providers

Below is a report by Consumer Representative Bernard Borg-Caruana on a recent session he attended on online feedback for users, carers and providers.

Online feedback for users, carers and providers

This session provided the challenges of gathering and publishing online feedback and recommended ways of increasing the potential of this avenue for users, carers and providers.

Lisa Trigg of the London School of Economics and Political Science presented on online rating and reviews for care providers.

This is in relation to the MyAgedCare website. The presentation for Aged Care  is where the Australian Government is implementing it. However in the UK it applies to all facilities and similar principles apply.

Aged Care covers:  community care, residential aged care and high care facilities.

How can you measure quality and the consumer experience?

Presentation

1. Why is it important?
2. Policy Context
3. Example
4. Challenges
5. Opportunities

Why is it Important?

Online reviews are the new word of mouth that 54% of adult consumers use before making purchases. 

• Twitter and opinions empower patients.

• We want consumer directed care and empowered consumers

• Gravity of the decision

• Difficulty of moving between providers

• Experience

You can only really assess the service once you have experienced it 

We trust providers.

UK bodies:  CMA + Care Quality Commission (CQC) +  NHS Choices all have a strong interest in this

After engaging constructively with the Competition and Markets Authority (CMA), 2 websites for finding tradespeople, Checkatrade and Trustatrader, and the care home review sites Carehome.co.uk, Care Opinion and Most Recommended Care, have all agreed to improve their practices. These improvements address concerns that were raised following a call for information by the CMA on online reviews and endorsements.

Reviews

The example is often given of Trip Advisor but some excellent lessons from Amazon (particularly regarding Fake Reviews).

Trip Advisor is usually ignored until you’re travelling somewhere where you have no experience: you have to use it.

People go out to dinner and do not review their experience but when selecting a restaurant will look at the star rating.

Some characteristics of aged care settings are “inelastic”:

1. Once you pick a facility you are unlikely to change it; even with bad experiences, a change in care, especially for dementia patients, can be detrimental but social dislocation is a factor for all residents. It is not the same as switching to a new product.

2. The gravity of the decision: How do you know that your loved one would have lived longer or had a happier life at another facility.  This is challenging in retrospect but even more challenging in Prospective decision making.

3. This is not like a diagnosis. You cannot get a second opinion. All care is individual. How can you be sure you have the right care.  

4. Cost of moving—recovering deposits

5. Choice is limited: Availability of services and proximity to the support network.

Residential Aged Care turnover is low and if there is no vacancy. It is unlikely that a consumer will check it out. Could end up with skewed reviews.

Who reviews?

Digital Inclusion reports in Australia and UK equivalent (OFCOM 2013): 

• Older people are less likely to be on the internet entering reviews. They spend less time on the internet and few push information 

• In Australia less than 10% of Indigenous Aboriginal's have IT access outside cities.

Wisdom of crowds – Surowiecki, 2004

Motivations: Some are altruistic and want to help others make better decisions but others think they can help the providers improve service

How do you know you’re getting a trusted reviewer? Some sites publish a number of reviews performed by a reviewer --- may not be useful in aged care as turnover is low.

Fake reviews— are big business – Amazon is suing publishers and providers of fake reviews.

Fake reviews by providers are a big issue and difficult to manage.

Positive reviews of their business and negative reviews for competitors—See Amazon’s experience

One review in the UK described a facility as excellent; 4 reviews over 3 years said 2 average and 2 terrible; NHS assessment, many areas were average and many below par and is always bordering on being closed down.

Accountability

Laws --- ACCC in Australia – false and misleading claims--  

You can also be held responsible for posts or public comments made by others on your social media pages which are false or likely to mislead or deceive consumers.

Businesses using social media channels like Facebook, Twitter and YouTube have a responsibility to ensure content on their pages is accurate, irrespective of who put it there.

Monitor your social media pages 

Barriers

Access to technology

Sufficient knowledge – technical knowledge to assess all aspects of the facility

Some large organisations may get good average reviews but may have a terrible eg chemotherapy unit ie not all services are the same.

Sometimes the people in the home are not in a position to advise you if they are getting the right care eg dementia patients.

Fear of reprisal and retribution – if you see bruising on your parent in a home ---

For effective review system:  the Government MUST look at defamation laws.

What consumers want:

1. Peer discussion; to meet privately with 1-2 people who had experience with a facility.

2. Stories override rating systems. If someone tells you a story, it often trumps the raw statistics and will sway you.

3. Accountability and reliable reviews

4. Reviews are not a substitute for an effective complaints system and need to be kept separate.

5. Advice to consumers:    Never rely on one source.

Difference in UK

Rating is linked to Pricing:  ie if you have 4+ star rating you can charge above $230 but if you have 3 stars you can charge a max of $230,  etc…

References

Digital Inclusion reports in Australia 

UK equivalent (OFCOM 2013: 

Wisdom of crowds – Surowiecki, 2004

Motivation of Reviewers – Sundaram et al 1998

Ubel 2001

Recognition of Reviewers

CMA report 2016 (Competition and Marketing Authority )

https://www.gov.uk/government/news/online-review-sites-commit-to-improve-practices

https://www.gov.uk/government/speeches/alex-chisholm-on-the-role-of-consumer-enforcers-in-a-changing-environment

By Bernard Borg-Caruana

Health in Difference Conference Report By Elizabeth Proctor Health Care Consumers’ Consumer Representative & Eleanor Kerdo Policy Officer HCCA

Elizabeth Proctor:

In mid August I was lucky enough to attend the first day of the 9^th National LGBTI Health Conference Health in Difference (and I apologise for the delay in reporting back!). The most striking thing about the conference was how thoughtfully the program and speakers engaged with the overlaps and interactions between healthcare provision and marginalisation of groups. A special focus was placed on how Aboriginal and Torres Strait Islander and culturally and linguistically diverse LGBTI peoples face multiple disadvantages, both when seeking healthcare and more broadly.

The conference speakers shared stories that showed how far we’ve come in LGBTI communities, but also how much work remains – a lesbian mother who in the 1990s snuck into hospital to care for her baby (it took the hospital a week to notice there were two mums taking turns), Bob Brown’s memories of shock therapy and seeking out so many psychiatrists before finding one who gave him the best advice (‘Bob, sounds like you’re gay. Why don’t you try accepting it?’), Muslim-Australian siblings challenging the western notion of ‘coming out’ (instead, invite your loved ones into your life), and lawyers advocating for sex-positive aged care facilities (why aren’t there any double beds?). In a bright spot for aged care, Human Rights Commissioner Gillian Triggs pointed out that the recent change of law for inclusive facilities was almost surprisingly uncontroversial; updating the Sex Discrimination Act so religious aged care facilities were not exempt from LGBTI non-discrimination was met with general acceptance across the community.

Eleanor Kerdo:

On day 2 Eleanor swapped in and attended the ageing and aged care stream. There are lots of organisations working on making aged care facilities (ACF)  and services more LGBTI inclusive, both at a policy and personal level. Silver Rainbow is offering training on inclusive practice to ACF staff, while the Department of Social Services is developing formal standards for LGBTI inclusive aged care. Palliative Care Australia is similarly working on LGBTI specific policy frameworks. On a frontline service level, Switchboard Victoria provides community connections to isolated LGBTI elders through the good old cup of tea, connecting them to new friends who can build their confidence and support them settling into aged care.

Philomena Horsley of Gay and Lesbian Health Victoria (LaTrobe University) presented on LGBTI people’s experiences in end of life care and reflected on the history of end of life care in the LGBTI community. At the height of the 1980s HIV-AIDS epidemic, the LGBTI community was at the centre of an underground end of life care and euthanasia movement to support terminally ill patients with AIDS. At that time a large number of nurses and doctors could see a clear need for those services and took big personal risks to provide care. As conversations about dying with dignity become prevalent again it is timely to reflect on those moments in history that were so compelling to past generations.

Several community groups expressed an interest in HCCA’s Advance Care Planning Project, and Christine is looking forward to working with LGBTI communities in Canberra to help people develop aged care plans that work for them.

Thanks for sending us to this conference we thought it was excellent!

Mobile Dental Care Service in Residential Aged Care Facilities - By Sandra Avila

In February this year, Matt Lee, (Project Officer - Mobile Dental Clinic, ACT Health, Dental Health Program) reported their dental health services are primarily for children and people with some type of concession and it is delivered by ACT Health. Matt mentioned that there are several dental clinics in the ACT which are located at Phillip Community Health Centre, Belconnen Community Health Centre, City Community Health Centre and Gungahlin Community Health Centre. When people have a dental emergency, they may have the appointment wherever they can see a dentist and the hospital takes emergencies during after-hours.

ACT MOBILE DENTAL CLINIC Image Credit : ACT Health

The mobile dental clinic was a commitment from the 2012 ACT Election and the government will invest $1.6 million over four years to establish and run the service. Funding for this project was given in August 2013. The mobile dental clinic was created to initially serve residential aged care facilities, special schools and to the young parents at the Canberra College Cares program. However, at the moment aged care facilities are their priority area.

Matt mentioned that one of the most challenging parts of this project was the procurement process and to prepare a detail submission on the requirements of the mobile clinic as there is not a lot of research in this area. A company in Queensland was selected to build the mobile dental clinic.

The mobile dental clinic was specifically designed for the ageing population including wheel chair accessible, water heaters and air conditioners. The main goal was to make the clinic functional for patients. They also have a reception and a sterilising area. A lot of electricity is required to run the clinic effectively therefore they installed generators and solar powers to ensure the track is environmentally friendly and uses energy from a responsible source. There were also a lot of inspections to ensure the clinic was operational and able to provide high quality dental services.

Matt also said that when they were in the designing stage they worked closely with a Local Health District in NSW as they started using a mobile dental clinic approximately two years ago. This was a very valuable process as the mobile dental clinic in the ACT was able to incorporate in the design the aspects that worked well for NSW and to avoid making the mistakes that they made in their design.

They started to trial this service at Salvation Army Mountain View Aged Care Plus Centre and they were there for about three weeks attending patients. At the moment they are determining how to deliver the service. Initially they wanted to see everyone within 12 months and go back for a check-up. Unfortunately this is not realistic so now they have implemented a triage process. They are still planning whether to stay at a residential aged care facility until they see everybody but this means that they would take a very long time to visit all the aged care facilities in the ACT.

There is little research about aged care and dental services and most of the research available is anecdotal. It can also be challenging to treat patients with severe dementia who cannot handle dental treatments.

Matt also commented that they have two dentists and two nurses and they rotate during the week and they also train junior dentists. They see all the people living at residential aged care facilities including self-funding retirees. However, they do not provide services for the residents of independent living units.  Before going to a residential aged care facility they send an information package to all the residents which include a letter explaining the process, preconsent forms for treatment and for dental screening and responsibility forms for those who have guardians.

Matt mentioned that they have received positive feedback from patients and there has not being many issues with the vibration of the track. They are in the process of setting up an evaluation system. At the moment they are able to report on how many patients they have seen and what treatments were provided. Fees may change later and this is something that is being reviewed.

Treatment in the ACT Mobile Dental Van :Image Credit: ACT Health 

They have contacted all the residential aged care facilities in the ACT and the majority of them have confirmed that they need dental services. It is expected to spend about two years getting around all the residential aged care facilities in the ACT.

They have been documenting the benefits of their service and collecting anecdotal stories. 

Matt showed to members of the group some photos of the mobile dental clinic.

At the moment they are unable to visit older people with mobility issues living at home as they are only visiting residential aged care facilities.

In the future they would like to go with the mobile dental clinic to public events such as the Floriade to educate people on oral health.

Members of the group were delighted to see this service being implemented in residential aged care facilitates in the ACT and congratulated Matt for all his work on the mobile dental clinic.

A video of the Health Minster talking about the Dental Van can be seen here.

The ACT Government Press Release can be seen here

Launching the ACT Mobile Dental Van. Image Credit: ACT Health

Author: Sandra Avila Secretariat Aged Care Consumer Reference Group

Alzheimer's Australia Dementia Workshop 10 November 2014

Alzheimer's Australia Dementia Workshop 10 November 2014

Karen from Alzheimer's Australia ACT

By Eleanor Kerdo, HCCA Policy Officer

In November of last year we held a Health Issues Group on dementia and how to support those in our community with dementia.

It was an extremely well attended session and Karen from Alzheimer's Australia ACT was an excellent facilitator.

It was both informative and for me quite personal having recently lost my Nana to Alzheimer's and my grandfather recently diagnosed with dementia. 

Karen started by telling us some of the facts about the disease. 

There are more than 342,800 Australians living with dementia

This number is expected to increase by one third to 400,000 in less than ten years 

Without a medical breakthrough, the number of people with dementia is expected to be almost 900,000 by 2050

whilst age is a risk factor it is not an older persons disease

There are approximately 25,100 people in Australia with Younger Onset Dementia (a diagnosis of dementia under the age of 65; including people as young as 30) 

Three in ten people over the age of 85 and almost one in ten people over 65 have dementia 

In the ACT 3 people develop dementia every week

37% of people with dementia in the ACT receive formal care

1/3 are from a culturally and linguistically diverse background

Dementia is not a normal part of aging

There is no cure

 There is a huge rate of people developing the disease, and not necessarily receiving the services they need. 
  

For me it was interesting to explore and acknowledge that dementia and cognitive decline, whilst common in older people particularly is not a normal part of the aging process.

Dementia is the symptoms of physiological brain disease. There is no cure.

The physiological aspects of the disease can begin up to 20 years before symptoms occur.

Family are often the first to notice symptoms of their loved ones, on average 3 years before an official diagnosis.

There are many different causes of dementia which can be found by following this link.

Early symptoms included; forgetting appointments, forgetting names, inability to perform complex tasks, difficulty finding the right words, lack of ability to judge distance and change in depth perception, and difficulty remembering recent events or conversations. 

This is thought to be an issue with the hippocampus in the brain  which deals mainly with short term memory and executive functioning, however there is many different causes of dementia and a lot is still unknown.

The rate of progression of the disease varies person to person.

Often people with dementia do not loose long term memory so can be relating things to what they can recall for context so it feels like they live in a different reality.

Alzheimer's Australia run a National Dementia Hotline  1800 100 50 which is confidential and offers information about support available to people living with or supporting someone with dementia and are able to refer to where to get legal advice or health services. 

Alzheimer's Australia ACT also offer several services and workshops to support those in the ACT Found here.

Karen then gave us some tips around dementia friendly homes and design. There are several fact sheets available on this .

What I found most interesting was how perception of the physical environment changes, often leading to people living with dementia struggling to participate as they used to or feeling anxious or fearful.

For instance the ability to differentiate different sounds from a group of sounds becomes difficult. So communication becomes increasingly difficult if there is lots of environmental sound. If you are trying to give an instructions often showing what you are doing while speaking as visual aids makes it much clearer. There was also a suggestion to leave up to 7 seconds between questions to allow for a processing time and a response.

Another tip which I wish I had when my Nana was living with dementia was the idea of a Life Story Book. This is a book containing photos of the person with dementia in every year of their life. Then each day you can ask the person to point to who they recognise as themselves and that gives you an idea as to where they are in time so you can communicate more clearly with them.

Visual cues where often suggested such as wearing a dressing gown if trying to encourage someone to sleep so they can see it is night time, or cooking food in-front of people that the process is seen and there is cooking smells.

Pain and dementia was also discussed as there is often a myth that those with advanced dementia cannot feel pain. However all people with dementia feel pain though it can sometimes be hard to assess as they may struggle to communicate this or recognise that they are in pain. Nurses and health care professionals should be educated to recognise this and there is more information on this here.

I was fascinated to learn that those with dementia often struggle to visualise the world in 3D and have a changed depth perception which means they can have a different way to see and can struggle with the geography of their own body, seeing patterns, perceiving the world and have a reduced field of vision.

For instance a black and white kitchen tile might look like the black tiles are deep holes that the person could fall into so they may be reluctant to walk on that surface. This is true of zebra crossings also. 

Those with dementia may see the black tiles as holes which they may fall into.

Similarly a highly polished surface may look like there is  running water over it again making people uncomfortable to walk in that room.

Making sure a room is well lit and avoiding patterns can make things easier for people. Avoiding all white in a room also helps as it is hard to distinguish a white toilet from a white tile floor if you cannot see in 3D! So changing the seat to a bright colour can help. Or changing to colourful sheets on a bed may help people locate where the sheets on the bed is.

The main tip was to create meaningful activities with people living with dementia. Often peoples procedural memory works, for instance my grandfather was an electrician and is an avid gardener so activities that may hold meaning for him might involve the garden and small electronics tasks.

I wanted to thank all who attended for sharing their personal stories about living with or supporting people with dementia. I was touched by the openness of the room and the willingness to learn about how to make our community more inclusive for those living with dementia. 

We are conscious of dementia friendly design for all of the new Health Infrastructure in Canberra such the new University of Canberra Public Hospital.

There are lots of great resources on the Alzheimer's Australia website if you like more information.

Eleanor     

Health Literacy for All

This work was completed as part of the consumer-led Health Literacy for All project that ran from June 2011 to June 2014. This project was an initiative of the Health Care Consumers Association (HCCA) of the ACT and was funded by a Health Promotion grant from the ACT Government.

HCCA has more than thirty years of experience in increasing consumer access to information about the health system. With the increasing complexity of our health system, it has become even more important for consumers to have access to opportunities to develop their knowledge of the health system. It is also important that these opportunities are ‘consumer-led’, that is, that they provide access to information that consumers themselves have said they need to know.

The Health Literacy for All project was designed around a community development model. The program particularly sought to provide assistance to disadvantaged and marginalised health consumers. It sought to promote consumer participation in the health system by providing opportunities for consumers to improve their knowledge of support, community and health services. It also sought to increase consumers’ ability to advocate for themselves and family in health contexts. This involved helping consumers to identify their own needs so that they would be able to interact more effectively with health professionals.

The topics for the modules are based on consumer requests, and the content of the modules was developed in consultation with consumers who participated in health literacy workshops. More than 250 consumers and 170 health care professionals participated in 40 workshops over a three year period. 

In the coming weeks the material we developed and use in our community information sessions will be uploaded to the HCCA website. 

"Aged Care: The People’s Forum" – at the National Press Club, 13 August 2013

Carol Bennet, CEO of CHF, at the Aged Care Forum.

Panel:

• Ian Yates – CEO, Council on the Ageing (COTA)
• Glenn Reiss – CEO, Alzheimer’s Australia
• Carol Bennett – CEO, Consumers Health Forum of Australia (CHF)

Ian Yates opened the forum by stating that over 40% of voters in the coming election will be over 50 years old. COTA wants to see a new deal for older Australians, which is outlined in their election platform. 

COTA is campaigning for:

• an end to ageism and age discrimination in all aspects of Australian society
• access to quality health services for all older Australians
• the participation of older Australians in the workforce as long as they want or need to
• access to quality aged care services when and where they are needed
• a reasonable standard of living for older Australians 

Yates went on to make the point that unemployment of Australians between the ages of 55 and 65 has the potential to have a detrimental impact on the health and wealth of this demographic. Whilst he welcomes the Government’s “Living longer, living better” initiative, aimed at reforming the aged care sector, Yates believes that it does not go far enough. The package will provide 80,000 new consumer-directed home care packages, in a similar format to the proposed Disability Care Australia packages. “Consumer-directed” means that the consumer controls the package and can leave different services if the care does not meet their needs.  The initiative will enable simpler access to residential aged care facilities (RACFs) and easier to understand financial arrangements to allow for comparisons between facilities. The new health reform package introduced by the Gillard Government will also see the provision of more beds in RACFs.

In summing up, Yates expressed his disappointment in the two federal leaders’ lack of attention to aged care during the recent debate.  He noted that there appeared to be little difference between policies of both parties. Yates emphasised that aged care funding needs to be provided on a needs-assessment basis rather than the current quota system, which is ineffective. He applauded the consumer-directed care elements of the “Living longer, living better” package, noting consumers want to make a contribution, be independent, and exercise personal choice. Yates also believes that the “My Aged Care” online gateway, which is part of the package aimed at simplifying information and access to aged care, needs a local face. He went on to state that the Productivity Commission report that informed the new reforms was comprehensive, but that significant portions of the report’s recommendations had not been included in the final package.  Yates asserted that there was strong support amongst the membership of COTA against the inclusion of the family home in the assessment of assets for an aged care place. Finally, he spoke on the need to have an open conversation about what constitutes a good death and respecting the choice of older Australians through the advanced care planning process. 

Glenn Reiss followed on from Ian Yates, commenting on the many exciting and daunting challenges facing the incoming Government with regard to dementia care. According to Reiss, the exciting part is the potential for driving social policy change, from the current model of a “one size fits all” approach to service provision, to a new model that promotes access to appropriate care and consumer empowerment. There are 320,000 people currently living with dementia in Australia, and by 2050, 900,000 Australians are predicted to be living with dementia. Dementia care costs the health system $5 billion annually and is the biggest risk factor in aged care. Reiss asserts the need for an increase funding for dementia research. To this end, Alzheimer’s Australia has launched its Fight Dementia campaign. While the Government has commenced implementation of an aged care reform package, Reiss believes that there will be a 5-10 year period before the impact of these reforms is fully felt.  

In summing up, Reiss called for:

• Access to care based on individual needs 
• An expansion of community care, particularly for those with higher needs, so that there is a real alternative to care in RACFs
• Dementia-specific respite care
• System advocates to help in guiding consumers through the complex system and ensuring informed choices
• Assured good quality in RACFs – at the moment its variable and not up to the standard that Australians would expect
• Zero tolerance of poor quality care in RACFs – quick remediation and investigation of adverse incidents
• Increased investment in dementia research
• Robust connection and communication between Disability Care Australia (DCA) and the aged care sector to ensure that people do not fall through the cracks at the DCA cut-off point of 65 years 
• Commitment from all political parties to these reforms

Carol Bennett started her address by noting how little about aged care had been mentioned during the election campaign thus far.  Carol warned that politicians will ignore the aged care debate at their peril.  She made the point that health is more than just treating illness – it is about occupational health, safety on roads, nutrition, transport, engagement in community life, family life, and all the other factors that make up a person’s life. Our system should promote health not just treat illness.  Bennett believes that our system is currently too hospital-centric, meaning that interventions are delivered the most expensive in environment, eating up limited health dollars.  A sizable proportion of hospital-based interventions should be dealt with in the primary health care context, within the community in a more appropriate setting and at a much lower cost. 

Bennett further commented that:

• Australia’s out of pocket health expenses are one of the highest amongst OECD countries, with costs for consumers higher than in the US and UK. 
• Poor dental health is an indicator of social disadvantage in our country, and that the burden of our current ineffective system impacts disproportionately on older Australians.
• Medication expenses are an issue for older Australians, due to the inflated costs for medications being passed on to consumers from the Government.
• Consumers don’t want to be passive recipients of services and that consumer-directed control of services and treatment is imperative.
• The current health system seeks to prevent mortality at all costs even against the best interests of patients.  Dying with dignity is not accessible for many older Australians. We need to have a conversation about futile care.
• Dementia care is particularly alarming at the moment with a system that focuses on acute episodes of care, rather than on quality of life.  Treatment is based on waiting for a crisis rather than on prevention or mitigation strategies.
• There is a critical need to move away from the current funding system that encourages episodic care rather than the holistic kind of care desired by consumers. Older Australians need to be at the centre of their care.

After the statements from each panellist, Yates, Reiss and Bennett participated in a Question and Answer session.  Below is a summary of that discussion. 

• All panellists agreed that improved aged care is not just about an increase in funding, but about a reimagining of the way in which care is delivered.  They all believe that community care needs to be emphasised so that the focus is not on institutional care. 
• Consumer stories are powerful for community organisations, as it puts a human face to an issue where figures and statistics cannot.  The Alzheimer’s Australia dementia campaign is based on consumer stories. 
• There is a growing trend toward older Australians wanting to have a voice and to contribute to the effectiveness of the health system.
• Advanced care planning needs to be coordinated nationally, across all states and territories to ensure a consistent approach. 
• There is a general acceptance that the new reforms introduce a “user pays” system where those who can afford to will pay more for their care.
• There is a little known “third class” in aged care which is comprised of older immigrants who have been sponsored by their families to come to Australia but don’t have access to any health services because of their visa determination.
• Economists and consumers agree that the current system is failing lots of people as there are not enough community care packages or RACF places where consumers want to go. There is a general belief that the new reform package will go some way toward improving some of these issues.
• There is a significant net capital and recurrent funding increase to RACFs as a result of the new reforms and there is a monitoring system to ensure this results in better care.
• There is a need to bring disability care, mental health, and aged care systems together to ensure people don’t fall through the gap and that services are delivered efficiently and effectively.

Kerry Snell

Health Infrastructure Program
Consumer Coordinator

Consultations on aged care and rehabilitation issues paper

Outcomes of the Aged Care and Rehabilitation Issues Paper/Options Consultation

Health Care Consumers Association of the ACT Round Table on 20 October 2008 at HCCA office Pearce Community Centre

There was a broad discussion on the underpinnings of the ACT aged care and rehabilitation services, the purpose of the plan, its context, its relationship with other health and broader government plans, coordination mechanisms and the need for monitoring and evaluation. It was throught that a preamble to the Plan should be provided to reflect those broad issues.

Options

• Development of specific care coordinators that look at the person as a whole – social, housing, physical health. These care coordinators must be able to cross all ACT Government Departments
• ACT Health to develop an appropriate convalescent facility (not a sub-acute ward) that allows people to appropriately transition back to their own home and or their new living arrangements
• Develop a spinal rehabilitation unit within the ACT
• Increased numbers and role for Nurse Practitioners
• Development of a single HACC funding service
• Increased palliative care services in the ACT (new facility constructed on the south side). Services should also be able to be accessed in facilities, home or community.

Consumers at the forum also raised the following more specific aspects and issues to be considered in preparing an aged care and rehabilitation services plan.

Scope of Plan

• The Plan needs to be realistic in terms of the planning period and resources
• The Plan should be defined in relation to the type and range of services being incorporated in the Plan against the broader context of the other available services; public/private: ACT Health/Commonwealth: ACT/NSW needs and services: aged care services/ community based/acute care/aged residential.
• The scoping of the Plan must also address both existing financial/funding models and those proposed.
• How does this Plan fit within the Capital Asset Development Program and broader ACT Government uses for other assets such as closed school sites?

Planning process

• The planning should take as its starting point existing services and structures, identification of shortcomings and positives
• Plan should include an implementation strategy and process
• Plan must be able to proactively interact with other Government agencies eg on local housing issues
• Plan to identify key performance indicators for monitoring and evaluation; this requires incorporation of appropriate data collection from the start of the Plan (preferably with a starting point baseline)
• Plan to be evaluated some 12 months prior to end of planning period.

Service philosophy

Plan must look at the person as a whole and must

• be person centred
• take into account the social needs of the person (not just physical)
• take into account the housing options

Plan to incorporate the community location approach rather than locating services adjacent to hospital campus.
Plan to provide for transition facilities and support services such as step down and convalescent facilities.

Identification of needs and issues
Demography including:

• current and projected demand based on demographic and service data
• comprehensive data-base of current services and user outcomes
• existing policies and plans
• outputs, findings and recommendations from recent and current reviews eg Equipment Loan Scheme

· Identify service gaps, transitions and services
· Consult with consumers, carers, health professionals.

Service Coordination
Discontinuities between the aged care facilities and hospitals are large
Gaps lead to huge personal impact and financial impact for the individual
and the need to support families and carers
There is a distinct lack of flexibility in service providers
Need for transition facilities and services

There needs to be specific care coordinators (see ACT Government Coordination across departments below)
- a navigator model
- cost effective
- may also need to act as an advocate

Plan should outline strategies to enable proactive linkages with other ACT Government Services:

• must be a whole of government approach that has all departments working together
• some people don’t want services that are run by non government organisations
• no out-sourcing of services traditionally provided by ACT health or ACT Government
• Northside Community Service ‘burnt’ 80k and provided a very poor service

• There are many services provided by non ACT Health service providers andhow will the plan link to other non government service providers
• Consider a single phone number to call to ask advice and or to help

Transition services
· There is an Australian Government push to centralise access to community care – this seems counterintuitive
· Identified a preference for government service (see Northside issue)
· There is need to simplify funding and services (i.e. broader entry criteria?)

Convalescence
· Convalescence beds are a critical service that needs to be reinstated
- enables an appropriate level of care
- allows for the individual to practice being at home
- there were 9 beds
- sub acute beds are not appropriate
- this should not take to form of a medi-hotel
- staff must be appropriately trained – i.e. not just certificate IV workers
· Clients who require a nursing home placement but are in the hospital system
- Needs are different from a convalescent facility
- There needs to be transition facility to free up the acute bed and provide the appropriate level of care for the individual
- Currently they are scattered throughout the hospital
- They should all be accommodated in one ward (or facility)
- There are between 20 and 25 people in the predicament
· Step down facility should be investigated as integral part of this service..

Housing
· Appropriate housing is a key
- Policy regarding single person single bedroom is poor
- Does not allow for visiting carer
- Can therefore lead to increased hospitalisation
- There is much time spent finding housing for those in need
- This costs far more than modifying housing
- i.e. $1200 per day for a hospital bed versus $20,000 for modifications, equipment and services for a year
- ACT Housing houses must be built with ‘universal design’ (adaptable housing standard AS 4299) at its core
· The Plan must enable ACT Health to engage to achieve a change in the attitude of ACT Housing
- People must have the ability/power to make decisions
- Allow some people to have modification made to their houses early
- Environmental sustainability must play a role also
- All departments must report against this

Identified needs

• Spinal injury rehabilitation: Plan should incorporate the processes needed to establish a case for ACT based specialised spinal injury and acquired brain injury units that can provide the necessary rehabilitation. Currently acute care is done well at TCH but spinal injury rehab is done in Sydney, which is disruptive stressful and expensive
• Inability to access an appropriate equipment (loan) scheme
• Are ‘not wanted’ by NSW health system

Palliative Care
- There will be an increase in palliative care services
- There needs to be a hospice provided on the south side
- The government should set aside land for this now and provide capital for its construction
- People want choice in services and options:
§ Community based (specific hospice)
§ Hospital based
§ Home based, with appropriate services provided to the home
- What are the projections for palliative care?
- Anecdotal evidence suggest that Calvary are not keen for a second hospice
§ Felt that there was very little accountability in the services they provided
- The group was not aware of the turn away statistics but felt that, from their experience, they were likely to be high
- COTA did some research ~ 20 years ago
§ Majority wanted palliative care in the home
· If they had a carer
· If the carer could cope
· If they were not in pain
- There is a respite service available
§ 2 beds only
§ Needs to be enlarged
§ Booked out well in advance
- Look at best practice palliative care strategies from around the world
- Review ACT strategy

Workforce issues
· General Practice
- hard to get GPs in Canberra
- almost impossible to get a GP to go to an aged care facility
§ it is expensive and difficult for them to do
§ when they are at the facility they often get inappropriate referrals (from untrained staff)
· Aged care nursing
- an issue both in aged care facilities and community care
- increased use of nurse practitioners

· Allied health care
- lack of occupational therapists is a particular issue

· How do we use workforce better
§ E.g. OT are unable to achieve the results the could because they cant access services and are doing too much administration
· Aged Care facility workforce
§ Not valued
§ Under paid – nurses are paid ~30% less than ACT health nurses
§ Under trained – many have a Certificate IV, many do not
· Community nursing
§ Highly valued
§ Must be funded
· Some OH&S requirements are silly
§ Using lifting equipment that takes one person in a home requires two people in hospital and or nursing home
§ This can prevent and delay the delivery of essential services
§ Risk framework needs to be looked at and appropriately managed

Aged care residential facilities
· Concerns
- once a client goes into the facility they lose their rights to choice
§ The facility knows what is best for them
§ Cant (always) access HACC services
§ Cant access community transport
§ Often lose the access to the community which increases social isolation that leads to further problems
- Care coordination would be appropriate
§ Facilities may chose not to be involved
§ This would leave their clients out of the loop
- What can be done to influence aged care facilities
- Recognise that many facilities are no longer profitable
§ Many more high care clients than before
§ Churches are now getting out of aged care
§ Maybe there needs to be a change in the model of care
- Is it appropriate for aged care facilities to look after older ‘high care’ clients?
- Staffing in aged care facilities
§ Under trained
§ No nurses
§ Not valued as employees – paid less than ‘someone packing shelves’
- Young people in nursing homes
§ This is in appropriate

Funding
- Two tiered system does not work well
- Too many different sources of funding
- Funding is too “specific” – too many criteria that makes it difficult to get funding and then to report on it
- ACT needs to try and influence Australian Government to simplify the system
- Would like to see HACC territory based rather than Australian Government
- Which department should administer HACC?
Other issues
· Refer to consumers and carers separately

· Social sustainability
- Key to keeping fit and healthy
- Remain connected with their community, their friends and their family

· Finance
- Against a brokerage model
§ Felt that this was just anther source of losing money
§ Need to review models that support the community sector

· Chronic Care
- Coordinated approach
- Self-care or self management
- Provide for greater levels of care

Implementation
The Plan should include an implementation plan with appropriate strategies and a schedule – noting the earlier comment about the need for measurable key performance indicators.