When the living (at home) is not so easy

It can be very difficult, confusing and downright stressful trying to navigate the MyAgedCare system which is why many people with health issues still opt to go into assisted living facilities rather than remain in their own home.

Everyone interviewed for this report said much the same thing: Those who deliver aged care at home level – the ACAT teams, the nurses, the respite carers, the domestic assistants – are all wonderful.

It’s the cumbersome, centralised administration that’s at fault.

The many glossy booklets put out by MyAgedCare are reassuring, even impressive. As is the website.

But the reality doesn’t always live up to the cheery rhetoric. Firstly, it’s important to know the difference between home support services and home-care packages.

The Commonwealth Home Support Program subsidises help with housework, personal care, meals and food preparation, transport, shopping, occupational therapy, social support, home repairs and planned respite (to give carers a break).

This is delivered by a registered service provider such as BlueCare, OzCare, Anglicare etc.  and you are expected to contribute to this service if you can afford it, with costs varying according to the type of service and the provider, who bills the client for contributions.

The Home Care Package services, graded one to four according to level of need, are subsidised through government payment of a designated amount of money  a year (depending on package level) to a provider, with the client then selecting the services required and finding a provider who can deliver such services.

For both categories of in-home support, you will need assessment and MyAgedCare is the point of entry.

For home support services you will need a visit from a Regional Assessment Service assessor who, if you qualify, will supply you with referral codes to give to the service providers.

For home care packages you will need a visit from an Aged Care Assessment Team (ACAT) who will then set the process in motion.

All well and good.

But let’s look at a couple of case histories to understand how difficult this process can be.

Case 1:

John S. (surnames are withheld in both cases because they are afraid of “upsetting the system”).

John is 84 and suffers from multiple serious health problems. He is mentally fine but his mobility is poor. He and his wife, who is also his carer, applied to MyAgedCare last September for a Level Three home care package.

He was already receiving three hours domestic assistance from a local (but limited) service provider.  In October, John was visited by an RAS assessor who approved the interim help of a home support service plus some minor home modifications.

A misunderstanding of the process, especially the relevance of the approval codes, meant a month’s delay in applying to a service provider. The service provider, one of the larger and more wide-reaching church-based organisations, was unable to respond until the end of January.

That provider now supplies a carer to give John a shower three times a week plus three hours respite once a week so his wife can go and do the shopping because John cannot be left alone for long periods.

The respite person will also do light duties round the house and change John’s sheets and make his bed because his wife’s own health issues means she is unable to easily do this.

Four months after the first approach for an ACAT assessment John’s application for a Level Three package was approved, with the proviso that this could take up to 12 months to implement.

He was also given the necessary approvals for respite residential care (so his wife occasionally can take a holiday) and admittance to an assisted living facility should that become necessary.

This is interesting because it shows that getting into a nursing home is easier than getting a home package, provided of course that a room is available.

“We are relieved to have finally come this far”, John says.

“But it’s been a tough journey because dealing with these government departments is incredibly frustrating and slow at a time in your life when you are really too exhausted and unwell to be able to cope.

“It’s confusing to be dealing with both MyAgedCare (the overarching authority) and ACAT and they don’t always talk to each other it seems, which makes for more confusion.”

As just one example, when ACAT finally got in touch, John missed the call.  He rang back immediately but the caller wasn’t available. He left a message.

The next day he received a call from MyAgedCare who told him the long-waited assessment had been “rejected” because the ACAT assessor had not been able to make contact.

This caused a lot of anguish but when contact was eventually made with the ACAT co-ordinator the assessment had not been cancelled and the information given by MyAgedCare turned out to be wrong.

“You find yourself talking to Michelle here and Jane there and Charlie somewhere else and you can’t remember who works for which department or service provider and the whole thing is so confusing you feel like shooting yourself,” says John.

“And then they keep asking you whether you are depressed or suffering from anxiety. What’s more, by the time one level of home care has kicked in you are likely to have deteriorated enough to need the next level.”

Case 2:

Sandie D. is in her mid-60s and suffered a stroke a year ago.  She was left with chronic weakness down one side which means she can’t hold things easily and must walk with a stick.  The inability to exercise has led to weight increase which has given her further problems.

And, she says, the stroke has left her “weaker in mind” and unable to concentrate easily or deal with problems.  She is long-since divorced and her only family is a daughter with problems of her own who lives interstate.

Sandie was approved for home support and, when available, a home care package.

“But it all took so long,” she says, “And I could never really get to grips with what I was entitled to or when I’d get it because I found myself dealing with so many people and so much paperwork”.  Unable to cope, Sandie went into a nursing home for interim respite.  Her condition has deteriorated and she now believes she will never again be able to live independently, despite an ACAT assessment that she should be able to do so.

Even the task of selling her existing home – necessary to fund her care and because it’s now a liability – is beyond her.  She has asked her daughter to try and do this for her.

In reply to a suggestion that there must be agencies within government or charitable organisations to help her, she says she has tried to seek help with some advice from her doctor, but: “It’s all so difficult and I just seem to go round in circles.”

To be fair, some recipients seem to have an easier passage through the rough seas of accessing aged care assistance but ALL those I spoke to reported at least some problems with wait times and confusion between the various agencies.

Australia’s aged care “experts” are not unaware of the problem.

There have been numerous major inquiries and reviews during the past two decades since major reforms were introduced through the Aged Care Act 1997, including last year’s Royal Commission which specifically addressed the issue of  “Navigating the maze: an overview of australia’s current aged care system”.

The introduction of MyAgedCare as a single portal for accessing services is considered to be a significant reform which has received encouraging acceptance from recipients.

Nonetheless, last year’s Royal Commission found that people still had difficulty navigating a  system which faces “substantial implementation challenges”.

Access and understanding is especially difficult for those who don’t have computers or devices to visit the website. According to the Aged Care website, Australia has budgeted $21.6 billion for aged care this financial year and this is expected to rise to $25.4 billion in 2022-23.

It seems like a lot of money (the defence budget is about $38 billion) but, “where does the money go?” asks  Amy, an ACAT assessor who requested her name not be used because MyAgedCare takes a dim view of employees talking to journalists and regards them as whistleblowers.

Amy agreed to speak to Your Time because, like others at the pointy end of providing aged care, she feels frustrated by inadequate funds for some services and the long wait times, despite careful prioritising.

As one example, she says she finds it difficult telling pensioners in the Home Support Program that there is no funding for, say, a shower stool, even though it is considered essential for safety.  The average cost of a suitable shower stool is $120 – quite a lot for a pensioner.

Sandie D. is an example of why some older people, when their health fails, opt for a once-only ACAT assessment that enables them to move into a nursing home or assisted living facility.

It’s just so much easier than trying to deal with all those initials and acronyms and catchy labels  – ACAT, MyAgedCare, RAS, DHS, Centrelink, NHS, HomeAssist, PresCare, BlueCare, Anglicare, CentaCare, OzCare … the list goes on.

Yet there are wonderful services out there, available to those over 65, which can keep us living independently, including subsidised modifications to our homes. To access them, you will need patience, good humour, persistence and the assurance that good things DO come to those who wait because MyAgedCare is trying to improve its implementation methods.

In the meantime, our list of in-home aged care essentials may be helpful.

 In home aged care essentials

DON’T wait too long! Wait time between initial contact and provision of approved services is prioritised and can take a long time – up to 12 months for home care packages.

You can contact MyAgedCare directly but how do you know when you are ready for help?  Check with your doctor who will help you list your health issues.  During assessment you are asked to sign a form permitting MyAgedCare to access your health records.

If you have a computer/smart device visit the MyAgedCare website.  This provides you with necessary information and links.  If you can’t access this portal off-line then phone 1800 200 422, make the necessary application and ask where you can get information booklets.  These will be supplied at assessment stage, but it’s good to have the information up-front.

Make your application on-line or by phone.  Be prepared to spend about 10 minutes answering questions as to your health, mobility, ability to cope.  Your initial ID is your Medicare card so have it ready.  You will be assigned a client ID number and then you are in the loop.

If deemed eligible, you will receive a home visit from either the Regional Assessment Service (RAS) or an Aged Care Assessment Team (ACAT), depending on the level of support you require. This is your second stage entry to either home support, numbered home care package or assisted living facility.

Take notes! You will be bewildered by all the different people and information you are now receiving. Start a file and record the name of every person you deal with and the organisations to which they belong, plus contact numbers and a brief summary of what they tell you.

If you are too unwell to cope with all this, you can appoint a friend, family member, carer or GP as your representative.  Inquire about this and also about the advocacy service provided by the Older Person’s Advocacy Network (OPAN).  More paperwork – and acronyms – but it might be worthwhile.

All approved services require a provider and this is YOUR choice though the assessors may help you with a shortlist.  Aged care services are heavily subsidised but you will be expected to contribute. Not all providers operate all their services in all areas.  Fees for services differ.  Some charge exit fees if you change providers. Some are better at certain jobs than others.  You can have more than one provider for different services. Seek help from ACAT if you find choosing a provider too confusing and have nobody to help.

ALWAYS ask questions if you don’t understand anything. The involved process of government-subsidised aged care will tax your concentration and memory to the utmost so be prepared!

The tale of a rail

Ainsley Sandow, mid 70s, has back and leg problems. Following an interview with an RAS assessor she was visited by a MyAgedCare occupational therapist who said she would set the process in motion for an approved home assistance provider to install a grab rail in Ainsley’s shower.

This would be done at no cost except for the actual rail.

Ainsley’s understanding was that this would be done by a provider which operates a very good home assist program for MyAgedCare-approved clients – let’s call it X.  Two months later, when Ainsley inquired why the job hadn’t been done, X said it hadn’t received any paperwork for the installation and, on checking, found that it was another provider, Y, that was supposed to be doing the job.

“The thing is,” says Ainsley, “I am already getting help from this second provider and they asked me if I had a grab rail in the bathroom and said they could provide one but had not been asked to do so.”

Ainsley calls Y, explains the situation, and is told that they do not have the capacity to do home modifications and the request had been passed to X the previous day.

She calls X again and is told they know nothing about it and to call MyAgedCare.  Back to Square One.

Confused?  Imagine how Ainsley feels – she still doesn’t have the grab railed deemed necessary by the occupational therapist – and has no idea when she will.