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Aged care still largely a maze for consumers: research

Many older people and their families say they feel confused and overwhelmed by reforms taking place in aged care and are sceptical they can deliver on the promise of increased consumer choice and control, a large-scale qualitative study has found.

The University of Sydney in partnership with aged care provider The Whiddon Group conducted interviews and focus groups with 54 current and future consumers and 57 aged care providers, health services and assessors across eight locations in NSW to better understand needs and perceptions of aged care.

Karn Nelson

The research, which was conducted across metropolitan, regional and rural NSW in late 2016, found a majority of consumers felt ill-informed and uncertain about the services available, their eligibility and the costs involved.

The scale of the changes taking place in the aged care system further contributed to feelings of confusion and helplessness among consumers, the data analysis conducted by Professor Yun-Hee Jeon found.

Karn Nelson, executive general manager strategic policy and research at Whiddon, said she was surprised by the “level of frustration, confusion and even despair” expressed by consumers.

Ms Nelson said the research confirmed the need for one-on-one support and advocacy to help consumers understand the system and the range of services available to meet their individual needs.

She said a system navigator service as recommended by the Tune Review would be a welcome development, but it had to be recognised that navigation support was a widespread need in the community and not just a minority concern.

Professor Yun-Hee Jeon

While acknowledging there was further planned investment in the My Aged Care gateway, Ms Nelson said Australia could also learn from initiatives currently underway internationally to improve information, advice and support to consumers. For example, she said Ireland has introduced ‘information parlours’ manned by volunteers to help older people understand their aged care options, access services and fill in paperwork.

Service providers in the study also expressed uncertainty about consumers’ ability to adequately assess which services would best meet their needs, which highlighted the need for decision-making support.

Ms Nelson said most consumers did not have the information, skills or capacity to navigate a complex aged care system, especially at a time of urgent need.

“While the figure is improving, around 60 per cent of the people who call us through our enquiry lines are in crisis when they are trying to access aged care,” Ms Nelson told Community Care Review.

Those with poor digital literacy skills, cognitive impairment or limited family and support networks faced additional barriers in accessing services and exercising choice, she said.

Ms Nelson said as long as consumers continued to feel uninformed, disempowered, fearful and unable to anticipate what they might need, the cycle of delaying aged care planning and accessing care at a point of crisis would remain.

“During data analysis it became evident that consumers wanted tailored services to their preferences and needs, but choices given were often either meaningless or confusing,” said Professor Jeon.

“Choice without sufficient information and guidance is no longer a choice,” she said.

Service gaps

Study participants also identified unmet need for psychological and mental health support services for older people as well as dementia services, particularly in rural areas.

Qualitative data will be gathered again next year to identify any changes in the perceptions of consumers and sector stakeholders. This data collection will also seek to capture the impact of the deregulation of home care on consumers, which commenced in February.

Consumer peak groups and the National Aged Care Alliance have been calling for improvements to the quality and accessibility of information and face-to-face support available for older people.

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9 Responses to Aged care still largely a maze for consumers: research

  1. Ted Wards October 5, 2017 at 2:53 pm #

    As identified in the study, consumers don’t know what they need, until they need it. My Aged Care advertises and so do many service providers, but people ignore what they see, until its needed. I am not sure how you get around that one.
    The rhetoric is always around consumer choice and control, but if you don’t understand the product you are purchasing, you really don’t get much choice. Many just say yes or put it in the too hard basket.

    The fortunate ones are those who go along to their local senior citizens centre and get to know the staff. The staff are required to refer the person to My Aged Care. The staff can also make suggestions to the person or their family about what to ask for. It is a much simpler process when a service provider refers the person to My Aged Care.

    If you have elderly parents, whether they need services or not, get them into your local senior citizens centre, get them involved in my aged care, get them to be a part of the system before they need more support. It is an easier process and they will get education about what to do about support, before you reach crisis point. Be realistic that your parents will need support sooner or later.

    Please dont wait until its needed, be organised, be aware, and be informed. You will be happier you have done the hard work before the crisis hits. We have found in over 55 years of supporting people in this way, they never reach a crisis point, and if they need more support they are very aware of what they need and who they want to provide it. They are part of the system already and only need to ring up and ask for more help rather than go through an assessment process whilst they are not well. Be proactive and you or your parents wont become a story or a victim of this system.

  2. Anonymous October 5, 2017 at 3:38 pm #

    I wonder if the confusion is a consequence of package recipients accessing a package being separate from the assessment process. Are the results the same for people accessing CHSP where the RAS facilitates access?

  3. At the coalface October 6, 2017 at 1:31 pm #

    I would also recommend calling any aged care provider and ask for their help. Obviously they have an interest/incentive in helping you get a package (hoping you take it to them) – but a lot of providers will do this for free, and have experience and skills to guide you through – as opposed to call centre staff at My Aged Care.

  4. Marcus Aston October 6, 2017 at 10:52 pm #

    It’s a maze because there is no info
    publically available to enable consumers to compare the quality of aged care providers and services at a local level.

    Uninformed consumers can’t have choice.They only get the glossy spin of the provider who are there to make a profit for shareholders and to grow.

    Providers are not transparent or accountable except to the Quality Agency which is a joke

    Thanks John Howard and your mate Moran for Americanising and corporatising aged care. As long as we’re making lots of money

    Who Cares

  5. Community worker October 8, 2017 at 7:04 pm #

    My experience is that most clients cannot navigate the system and only identify what is relevant when they need it- but when they need it, is in a crisis or urgent situation whereby needed now not down the track – and it is the people who do not have family or friends to support them through the navigation process, that are vulnerable and left out. My organisation has a high percentage of clients without informal resources, and when they ring My Aged Care are told in jargon and brief terms, what is required of them to ‘make choices’ and ‘be assessed’. Making choices is overwhelming, I have experienced as a worker in the sector trying to explain and be an advocate for choice, let alone a client who has had a sudden crisis occur (loss of career, loved one or change in need). The services change so frequently that doing research ahead of time is pointless, as much as needs may be unlike what is anticipated. The dept of health has been very open to consultation and feedback from service providers, clients and general community and IS trying but it is the vulnerable who say to me that without my personalised advocacy support face to face (including assisting to access services and basic assessment beyond my own organisation), that they would ‘give up’ and ‘it is too much’- and this is at entry level home care let alone making decisions about packages and residential care, which many of our clients are on waiting lists for. What is the answer? A centralised system has its benefits but the time is takes due to multi contracted services for initial assessment is too long and the dependency and expectation to access via internet is too soon, we all know. Bring on the free navigation support face to face per state- this is needed everywhere.

  6. Community worker October 8, 2017 at 7:15 pm #

    Calling a service provider is not the answer always because yes, as at the coal face suggests, with ‘client choice’ being one of the objectives of my aged care, it is not in a service provider’s interest to spend time with a client to help make an INFORMED choice that leads them elsewhere – jobs in community aged care increasingly ask for Sales Driven staff- time costs money to organisations – this is the future. Some service providers however do spend the time regardless of the cost to their organisation because workers are passionately driven by client need – but this will not be tolerated by funding and stakeholders for much longer.

  7. Laurice Demian October 9, 2017 at 9:19 am #

    The current situation of most of CALD older clients who are 80-90 years old is very critical ,
    most of them lost their few services from the local council, and now they get lost between my aged care who told them the waiting period is 16 weeks, and their urgent needs such as personal care and home help .
    As a provider we are working hard in order to help clients by linking them with some available short term services.

    some clients are very sick and old like 94 years old , we hope that consideration could be given to these clients

    Thank you

  8. Waiting for a package for a parent who cannot leave hospital without one. October 10, 2017 at 4:13 pm #

    Something major was lost in the reforms. In the past, if someone with a major need approached a good HCP provider, even if they didn’t have a package available, they would find the funds to support them (usually by moving surplus funds from other packages to do so). Now, it doesn’t matter how urgent your need is, If you don’t have a package there isn’t anything a provider can do for you (short of cobbling together some non-coordinated and inadequate CHSP services).

    The national queue is supposed to respond to priority but it is completely overwhelmed. The work approved providers were doing on the side is no longer there and so the true demand is now completely transparent. The new system needs at least double the number of packages in order to work. The fact remains though that centralised queuing solutions are always less efficient and slower than a funded local community solution that can adapt quickly to respond to local needs.

  9. Angus Kerr October 19, 2017 at 2:00 pm #

    My experience echoes Community Worker’s and I welcome Tune’s recommendation to introduce an aged care system navigation service. Research shows that for people who know a service area well, more choice is better than less. This is great for consumers and their families who know the sector well and are eager to make the most of the opportunities available to them. For those without this insight, however, facilitation support or as the Tune report referred to as system navigation service is the missing piece of the puzzle that makes choice and control possible.

    A need for face-to-face information and support rather than call centre and online-only information will provide improvements to the quality and delivery of information and support given to consumers to help them better understand and exercise choice and control in aged care. ACAT’s are already identifying vulnerable people who may struggle to engage with providers once assigned a package but who can facilitate this process and how is it funded? My assumption is that many consumers are being assigned packages and due to the difficulties in navigating the HCP provider market are not taking these packages up within the 56 +28 days, slowing down the whole national queue process and increasing waiting times for others on the national queue.

    Call it what your will, Independent Facilitation Support, System Wranglers or a Consumer Support Platform, this missing piece of the puzzle could be so much more than merely linking participants to providers and ensuring the committed supports are accessed. At its best, this support will engage consumers in exploring what is possible through their Home Care Package and provide them with clear expectations of what a Home Care provider can and indeed will provide. It will reduce the administrative burden of choice and control and supports the consumer (with the chosen Home Care Provider) to put together a package of supports that genuinely facilitates progress towards their goals and wishes.

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