I've been away from my blog for some months. I haven't been hiding out from the social media trolls or decided I had better things to do with my time. I enjoy writing as it gives me perspective and enables me to put my many jumbled thoughts down 'on paper' into a semblance of lines and organised paragraphs of information to try to make sense of my version of a maddened world. I write about life and observations that are entirely my own point of view based on my experiences, research, the current political and social climate and the books I tend to devour when I have the time.
The issue for me right now is time. In between caring for myself and my own family, I have been caring for my elderly parents. I have touched on my mother's illness and a short history of aged care here before https://shiannonlc.wixsite.com/mysite-1/post/the-aged-care-crisis .. but it is my father, my dealings with aged care providers and ACAT that make a worthy discussion in the next few paragraphs - not the least because of the many difficulties I have been having with caring for my father and dealing with the exasperation and disjointedness of My Aged Care.
My father has become more difficult to deal with as he is getting older. He is now 94 years old and was a once very active and athletic man. A sportsman and an adventurer, he worked on the gold dredges in the jungles of Papua New Guinea & played representative football there. Back home in Australia his career and pursuits ranged from motorcycle racing, horse riding, deep-water fishing and football. He was a natural sportsman and a hard worker. A printer by trade and the foreman of a printing factory, he also did everything from bar stewarding to owning his own hotel and owning his own lucrative delivery business. Life was to be lived and Dad lived his life in precarious enjoyment from one day to the next. He has survived two severe car accidents and one frightening brush with cancer. In his own opinion, staying still in retirement was to put one foot in the grave.
In the last two years, age has caught up with him physically and memory loss has become a noticeable problem, impacting on his routine in his day-to-day living. Several years ago he was registered with My Aged Care and received the bare necessities under the Commonwealth Home Support Program. With this he received minimal support through Anglicare with 1.5 hours per fortnight for housework and laundry and Star Community Services were engaged for transport and home maintenance. For these services a nominal amount would be direct debited out of his account. Transport and home maintenance were required to be organised by my father - which became more difficult as Dad's memory deteriorated. It was at that point it was decided between my father, his general practitioner and myself that I would become his Enduring Power of Attorney so that I could take over his financial and health affairs and be the spokesperson between Dad and the services that he required.
It was also at this time that I discovered that Dad didn't even have a support plan in place for the Commonwealth Home Support Program. They were just bumbling along with the bare minimum and nobody was asking questions, supporting or even listening to my father when he asked for more services. I rang My Aged Care to acquire an AC number to link myself to my parents so that I, and they, could have a record online that I was their spokesperson. I also enquired about getting Dad some more support services as a more recent visit with a CT brain to his general practitioner confirmed that he had deteriorated further.
A few months went by and I again, in frustration, rang My Aged Care to enquire about getting Dad assessed for a support plan for more services. It wasn't until two months after that call a face-to-face assessment was organised for myself and Dad in his home on 8 November 2021. The interview lasted 1.5 hours and covered Dad's mental health and physical well being, his medications and what services could be put in place for him. While Dad required more help around the home, he was already receiving the maximum 1.5 hours per fortnight through Anglicare. As he was already registered with Star Community Services for transport and home maintenance, the only real changes on the assessment were a speech therapist who assessed dad's ability to swallow and map out a meal plan - and an occupational therapist who assessed Dad's mobility needs around the house and organised through Star Community Services some mobility grab rails for him. Other services that were requested:
Garden maintenance
Podiatry
Social support individual
Support and other mobility aids
The priority listings for the above were low to medium. Dad still hasn't seen a podiatrist - which he desperately needs - and has to pay a local gardener through a private service to do his lawn mowing. I'm still waiting to hear from a contracted service as to whether dad has been allocated a social support person to help out when I'm not available. We have also bought Dad a mobility scooter, a walking stick and are looking at wheelie walkers as there has been no further word on when we would be moving forward with a service provider with regard to mobility aids.
At the bottom of the letter that My Aged Care sent me after the assessment on 8 November 2021, was a recommendation for an ACAT assessment 'due to increased services required due to loss of independence and not driving. Package for care coordination required for an increase in long-term services'.
Up until that point I was not aware of how many hoops we must jump through just to make it onto the first step of the ladder to achieve a referral for a package with ACAT. As far as I was concerned, the prior assessment on 8 November 2021 was the initial assessment to achieve that prestigious package status with ACAT. And we had not been informed otherwise. We were just expected to know.
Dad's deterioration was becoming more noticeable now with more loss of mobility. The frustration, anger and loss of power that inevitably comes to most of us with the ageing process made Dad argumentative, difficult to manage and abusive. I was finding it harder to manage on my own, particularly as Dad would ring me in the middle of the night panic stricken and raging, screaming at me to call an ambulance as he thought his time was imminent. It was after the third occasion the ambulance had been called that the attending paramedic asked me how I was coping and told me he would put me in contact with an aged care advocate to advise me.
In early January 2022, I rang ACAT again with regard to organising a podiatrist for Dad and to enquire about the second assessment for his package. I was told to ring the provider allocated for Dad's podiatry and that somebody would be in touch with me regarding the package assessment. I rang the community support provider about the podiatry and was told that because Dad was a low priority it may take a while before he gets an appointment. As I type this it is April 2022 and I have yet to hear back from them.
In early February 2022 I received a call from ACAT with regard to making an appointment with them for an in-home assessment for a package for Dad. This appointment was made on the week of 14 February 2022 at their convenience because they only booked a short time ahead as the appointments often took a while to get through. The only day available at that point for me to be present at my father's home was Monday and I was informed that it was not a face-to-face assessment but a phone call on my mobile to my father. This was extremely frustrating, as ACAT and other health services that my father engages with were well aware of the difficulties that my father had conversing on the phone because of hearing loss. Although I am my father's EPoA, I was advised my father had to be present to answer some basic questions from the assessor.
To cut a very long and exasperating story short, the phone assessment went for three hours via my mobile phone and bordered on disastrous. My father couldn't hear what the assessor was saying on the phone, so he abused me as I repeatedly shouted what the assessor was saying. He was convinced I was arguing with him and reacted accordingly. I eventually got through a long conversation with the assessor about Dad's medical history, his deterioration and the priorities that we thought should be put in place for him. Towards the end of the conversation the assessor informed me that Dad had been assessed as being eligible for a level 2 package but the wait time for that package was up to 12 months. I asked the assessor why the wait was so long for somebody of my father's age and was told that it was because of a lack of available government funding.
I have some concerns about that statement from the assessor -
1. My father is continuing to deteriorate. By the time he does receive his level 2 package, he may well be eligible for a higher-level package.
2. My father will be 95 years old in October. At this age, why should he have to wait so long for help when it is possible that he may not be here for his next birthday?
3. If and when my father deteriorates further, will it be possible to organise another assessment for a higher level before he receives the level 2 package - and will the wait time be once again drawn out, negating the fact that my father has deteriorated, is older and needs it as soon as possible?
4. Why couldn't the ACAT assessor come to my father's home for a face-to-face assessment, as is recommended for a formal assessment, to gain a better understanding of my father's environment and personal difficulties without hearing it second-hand from me in an exasperating phone call? Would this have resulted in a higher package?
I've been doing a bit of reading on the aged care system and what is obvious is that the entire system is under enormous pressure. As I've mentioned in a previous blog the entire aged care system of privatisation can be traced back to John Howard. Under Howard's 'Aged Care Act 1997, there was an increase in private investment. Private equity firms, new foreign investors, and superannuation and property real estate investment trusts entered the residential aged care market'. This explains many of the problems that have accumulated with regard to aged care homes themselves, but why is the entire sector under pressure?
As it stands the sector has a feeling of discord about it. No department appears to sync in with another. My dealings with ACAT via phone regarding my father have only amplified what I have been reading with regard to this. According to the Aged Care Royal Commission, 'The aged care system is difficult to access and navigate. People trying to get aged care have reported the experience as time-consuming, overwhelming, frightening and intimidating'. For older people with little or no experience with the system, My Aged Care in it's current form is not the answer. My Aged Care itself does not offer face-to-face assistance and is only contactable via the telephone or via their website, where clients can view services and services that they may be listed for. The difficulties for my parents in navigating a confusing online system like that would be insurmountable if it were not for me. They have no understanding of computers and my father has little tolerance or concentration to spend what might be anything up to an hour or more on the phone trying to explain to a stranger in a contact centre his care needs. In the few times I have spoken to My Aged Care staff at their contact centre about my father, I have received limited information about what might be available and that I would have to wait for somebody to contact me. My understanding of the machinations of My Aged Care at the time were limited and nothing about the process or the availability of services were explained to me. I can imagine many older people would give up at this point, as the help and information that they require would not be forthcoming. The issues that My Aged Care do have with regard to flow of information stem from fragmentation and a lack of communication. While ACAT itself is not privatised, services that come together for the aged and are subsidised by the federal government under the aged care banner tend to be not-for-profits or private businesses that, for all intents and purposes, are all run for the sole purpose of attracting revenue and profit.
The findings of the Aged Care Royal Commission were shocking, as we know. One of their recommendations included merging RAS (Regional Assessment Service) and ACAT into one body to maximise efficiency. While the Aged Care RC also pointed out that an endorsement for the merging wasn't a proposal for outsourcing of ACAT, the government were quick to jump on the privatisation bandwagon and in 2020 quietly 'announced that a network of private assessment organisations would deliver it from April 2021'. They abandoned the plan soon after a COAG meeting with state and territory health ministers, who were unified in their opposition to the federal government's proposal. This was not the first time the government had attempted privatisation of ACAT and it will probably not be the last. Privatisation of an essential service like ACAT which has been incorporated into state-run hospital systems would, in effect, leave room for more exploitation and conflicts of interests as private providers would contract assessments for profit rather than any independent duty of care.
But I digress. The Commonwealth Home Support program that Dad is now a recipient of is an entry level support for the elderly but it is not without similarities of operation that border on the commodification of the elderly. Most aged care 'providers' are classed as not-for profits. Although, as we know, not-for-profit organisations can be run like commercial businesses. Some providers for the Commonwealth Home Support Program are also privately owned organisations that are run as a business. Familiar entities have popped up on Dad's support plan - Anglicare, Star Community Services, Mater At Home, Blue Care and a couple of providers that I haven't heard of before. These providers are involved in everything from aged care services to NDIS support. Some are small community services that rely heavily on volunteers and donations and some operate more like corporations with annual revenues in one state alone being over $260 million. Blue Care is touted as one of the largest providers of residential aged care, community care and retirement living in Queensland and northern New South Wales. Blue Care in turn is run by Uniting Care Queensland, which was embroiled in controversy in 2020 for 'cutting staff and crying poor - despite having $250 million in the bank'. United Care Queensland reported an annual loss in 2019 of $30.5 million and in lieu of that, asked the federal government for more financial assistance. With more than $250 million in the bank, UCQ could have easily paid the staff that they had cut. Because of the staff cut, aged care services were undermined and the elderly were not receiving the care that they required.
Another provider, Life Without Barriers, like some of the other bigger providers - has a polished online look extolling the services they offer. They are diverse in their range of services - aged care, disability, disability employment, foster care, mental health and other community services. They offer their services Australia-wide and in New Zealand. In 2020 their revenue exceeded $750 million.
Life without Barriers has not been without scandal. Cases of abuse have emerged via the Disability Royal Commission, with incidences of assault, sexual assault and neglect. One distraught mother of an intellectually impaired young woman described LWB thus: "LWB treated (my daughter) like a commodity because she had a large [NDIS] funding plan. It was like they felt they had ownership of (her)".
Life Without Barriers were also in the news for employing a person who had a history of sexual abuse in their foster care program. It emerged during the inquiry that LWB had a labour-management arrangement, 'where a large percentage of staff were contracted.. many of the carers weren't required to have qualifications and were not trained to identify suspicious behaviour among their colleagues'. The system itself was described as being 'over-engineered'. I would describe the entire system as being completely underwhelming with a lack of cohesion. The fact that there is no cohesion makes it tragically easy to exploit for nefarious purposes or for profit.
The Commonwealth Home Support Program manual states that:
The CHSP will
Provide stream-lined entry level support services.
Be supported by My Aged Care in providing information and access services through:
A central client record to allow client information to be appropriately shared assessors and service providers.
A consistent, needs-based assessment process.
Better access to relevant and accurate information (for clients, carers and family members, service providers and assessors), and
Appropriate referrals for assessments and services.
Deliver services and support with a strong focus on wellness and reablement and restorative care on a short-term basis, or of an ongoing nature, or across a small number of time-limited interventions, to maximise a client's independence.
Provide sector support and development activities.
Promote equity and sustainability through a nationally consistent client contribution framework.
Streamlined contractual obligations such as consistent record keeping processes and reporting requirements.
A few words tend to jump out at me here in relation to my experiences so far with my father, my dealings with My Aged Care, the CHSP and ACAT.
Streamlined
Consistent assessment process
Better access to relevant and accurate information for clients, carers and family
Nationally consistent
I'm sure some of the workers do their best but nothing I have experienced with my father over the last 18 months or more has been streamlined, consistent, accessible or nationally consistent.
It clearly states in the CHSP manual that it is entry-level and is not designed for 'older people with more intensive and complex care needs. It also says 'In conjunction with the Home Care Package (HCP) program, residential aged care and other specialised aged care programs, it forms part of an end-to-end aged care system offering frail older people a continuum of care options as their care needs change over time'. The manual alludes to the coming together of all of the support services available in an organised and respectful way to service the needs of our elderly in the community. This is not only not happening for my father, it's not happening for the many people I speak to in person and online with regard to the specifics of aged care. I hear of many horror stories of care, or lack thereof, of elderly family members. These stories are ongoing and are not random. They are in their thousands. Very few people are left untouched by the lackadaisical approach to aged care by certain providers, the neglect and the ongoing abuse perpetuated in the industry itself.
The CHSP was introduced and commenced by the government in 2015. It replaced a number of programs:
HACC - Commonwealth Home and Community Care
NRCP - National Respite for Carers Program
ACHA- Assistance with Care and Housing for the Aged
DTC - Day Therapy Centre
HACC had been around since the passing of the Home and Community Care Act in 1985. Services under HACC had increased by three times since the 1980s by 2013. The HACC program was jointly funded by state governments/territory governments and the commonwealth government. The pace and development of the new system of care, CHSP, has been slow and underfunded and recipients of past HACC funding were reclassified with many levels of care that recipients may have been entitled to under a package level recommenced under the entry-level CHSP. Originally touted as the solution to the address the 'fragmentation' of services of the current system (HACC), the new system, in my opinion, doesn't seem to be offering the continuation of care and the streamlining of services it was tasked to.
With the HACC system itself, state and territory governments were the primary point of contact for HACC service providers and consumers. They were responsible for the program management and the approval of funding of individual HACC services in their regions. This program was far more centralised than the CHSP. HACC was community driven and responsible for the funding of service providers under a more stringent regimen and requirement of funding. There were a variety of providers across the regions, including voluntary organisations, community groups, not-for profits and private for-profit business models. It certainly wasn't perfect but one of the purposes of commonwealth takeover of funding was to allegedly streamline services and make it easily accessible for older Australians - not continue to fragment the service model, underfund the services to the point where it is seen to be neglectful and limit participation of many older clients due to the lack of understanding of the availability of services.
In 2020, the Grattan Institute produced a report on reforming aged care. They were scathing in their opinion of our aged care system in its current form, saying the 'aged care system is a mess and is not fit for purpose'. They've recommended universal care for the elderly, not rationing care or 'classifying people into broad groups'. They suggest once again turning to regionally based managers geographically based across the country. The lack of presence of My Aged Care in bricks-and-mortar locations only serves to separate and dehumanise the process of care for elderly Australians from where it needs to be - personal, hands on and face-to-face. Increasing funding and introducing legislation to support staff-to-patient ratios, increasing numbers of registered nurses, implementation of increased staff training, wage rises and legislation to improve reporting and transparency standards of providers of aged care are some of the recommended improvements.
The Grattan Institute's recommendations:
Tailor services to people's needs through care planning.
Improve access through universal funding for care.
Means-test everyday living and accommodation.
Improve system management through decentralised governance.
Lift quality through standards and workforce reform.
Improve system coordination.
The Grattan Institute stated that 'the current provider-centric system has failed older Australians and should be replaced by a system based on human rights'. Money that is wasted on 'overheads' in a centralised administration could be better spent with more effective planning to meet the needs of our growing aged community. The Grattan Institute are concerned that the CHSP, under the banner of My Aged Care, lacks transparency and leaves thousands of elderly people like my father without adequate support, with government policy actually encouraging provider profits over the needs of elderly people. My experiences with My Aged Care, the feeling of a real lack of coordination and effort between assessments, negotiation of services and service planning are echoed frequently in this report.
The Grattan institute reported that 'just over half of the people in this program (CHSP) receive only one type of service'. While the CHSP is an entry-level program, it is possible to receive multiple services through this program and still be within the limitations of the funding offered. My father existed on one service - the 1.5 hours of house cleaning and laundry for approximately two years as he noticeably deteriorated - and nobody thought to suggest more services for him until I took over his healthcare. Many elderly people languish in their homes receiving the minimum of care without any input from family or people receiving the government subsidies for that minimal service. The frail and aged are 'expected' to be proactive in their treatment or have somebody who will step in to push through the quagmire of disjointed information just to maintain a low-level service lest it falls into the realm of no service at all. Since I stepped in for my father I have discovered that portions of the agreement that were made with Anglicare were not being adhered to. I only discovered that Dad's laundry wasn't being done when my plumber, who was at Dad's place doing a job for him rang me to tell me he had hung the washing out because it was clear to him that it was beyond my father's capabilities. This job requirement for the laundry to be maintained for Dad was quite clear in the documentation that I read from Anglicare.
Providers of CHSP, as with all other aged care services under My Aged Care, must be 'approved by the Commonwealth Government and regulated under the Aged Care Act 1997.
The objects of the Aged Care Act 1997 include:
Quality of care.
Access to care that is affordable.
Appropriate outcomes for recipients.
Accountability of the providers.
Protect the health and wellbeing of recipients of aged care services.
Ensure aged care needs are targeted
Facilitate access to aged care services for those who need them.
Encourage diverse, flexible and responsible aged care services.
Plan effectively for the delivery of aged care services.
Improve the integration of the planning and delivery of aged care services.
Promote ageing in place through the linking of care and support services.
This little spiel gets itself off the hook at number (2) by mentioning 'due regard that must be given to the limited resources that may be available to support services and programs under this Act - and the need to consider equity and merit in accessing those resources'. As it likely should, given the diminishing funds and fragmentation of some support services under it's banner.
The limitation of CHSP, according to the Grattan Institute, is that it is governed by a program manual rather than the Aged Care Act 1997, despite providers being approved by the government and regulated under the Act. Under the CHSP program manual there is a lack of transparency and statistics are not generally reported. It is difficult to determine waiting times the real numbers of elderly people who are not receiving or not receiving adequate support. https://www.health.gov.au/resources/publications/commonwealth-home-support-programme-chsp-manual
The real tragedy of this system is the lack of funding, leading to longer wait times for people who are at a stage of life where their waiting time may be limited. In 2020, well over 100,000 people, who were assessed by ACAT for their home care packages and were deemed eligible - were placed on a waiting list. Dad, who was assessed as being a level 2, as mentioned, could be waiting up to 12 months for the extra funding for his increasing needs. Those eligible for higher packages could be waiting for up to 2 years. Not much has improved since 2020, in fact it has become worse - even more so considering that some of the statistics remain under-reported.
My father continues to have problems with CHSP. While the hand railing that was installed in Dad's home by a provider after the original assessment by an occupational therapist has been of great value and has helped my father negotiate difficult areas around his home - the assessment didn't cover all the areas he uses. I have made more calls to the service that installed the hand rails only to find that Dad must be reassessed in his home by the occupational therapist to gain extra approval for the installation of more handrails and mobility aids he will need. The occupational therapist's report will then be sent to the installation provider to perform the service. In essence, I have had to go through the same two providers again to perform a service that should have been covered after the first assessment. I have been given no timeframe for this process, although I've indicated to the team who will be performing a second occupational assessment that my father's situation is precarious and urgent because of his deteriorating balance. They informed me they would get back to me as soon as possible. It's been almost two weeks and I'm still waiting. I can only surmise my version of 'precarious and urgent' is subjective as far as they are concerned.
Regardless of how much a recipient of CHSP or the Aged Care Package has been allocated, providers charge approximately 30 percent in administration fees of the recipient's funding. So in reality the recipient is only ever really receiving around 70 percent of funding if they use their total allocation of funding per year. If a client is unhappy with a service or pricing, they are within their rights to change their provider. Changing their provider and acquiring the information for services and access to other providers is often difficult and cumbersome under My Aged Care and the information that is available to the recipient or family members to negotiate for them may be limited. My Aged Care, as mentioned, is limited by its online presence with no real access to information for those who live remotely or do not have the necessary skills to gather information online to allow them to compare providers and negotiate adequate care. Some provider fees are more expensive than others. There are virtually no limitations, checks and balances on how much a provider can charge for administration fees or if, indeed, they are over-servicing a client for added subsidisation. It is a system ripe for exploitation and rife with exploitation of vulnerable people.
On top of that are the staffing issues. Many staff who work in aged care or home care are underpaid and under-trained. It is more convenient and profitable for some aged care providers to supply staff who have a limited skill set in order to pay them lower rates. Some staff are even employed as contract workers who have to supply an ABN and manage their own taxation and superannuation. As with aged care facilities, there is a limited amount of time that can be spent with aged clients, depending on their funding and package level. The 1.5 hours per fortnight prioritised to Dad for housework and laundry per fortnight under CHSP is paltry but this is apparently the limit of the service that Anglicare are able to offer him under the CHSP. To be reassessed for more, I can only assume that my father must make it onto his level 2 package for care - something he will likely have to wait for up to 12 months to receive.
Poor regulation that has been weakened over time has birthed a system that can be used quite well for exploitation while treating the elderly as a commodity for profit. From 2016 to 2020, the proportion of for-profit home care providers tripled. I don't doubt that figure would be higher now. Profits are increasing for these organisations while the duty of care for the elderly has become untenable in some instances.
But back to the crux of the issue - the federal government. Taking away the control of aged care services from state governments and creating My Aged Care has in effect centralised and depersonalised the entire program. There are no major state organisations overseeing what is actually happening on the ground which has promoted dissociation from the very real issues of the elderly and the human face of ageing. The federal government, as usual, have distanced themselves from the localisation of relationship-focused care and have created a transactional-focused system that is low on regulation and high on lack of transparency.
My father, who has had a long and fulfilling life, who has worked hard all his life and has paid his taxes with limited grumbling over the years - deserves so much better. He wants to remain in his home for as long as possible and is terrified of losing his independence and going into a nursing home. I expect him to be frustrated at this point in his life as he loses some of his mental cognition and physical capabilities - and I try to deal with it as best as I can, but I am only one person battling a system that is designed not to work in a way to overly benefit our ageing population. By it's very deliberate lack of transparency there are few avenues of resolution and ways of ascertaining who are the best and most equitable performers in the industry. We are lumped with copious providers across a broad spectrum of aged care needs that we know little about apart from their presence in our locality. The elderly are also victims of a lack of funding and are not being considered 'on merit' of age or healthcare needs.
The system we currently have is based on the principle of rationing under a severely underfunded model. It is not rights based and does not deal with the individualisation of needs to enhance quality of life and keep our elderly independently in their homes for as long as possible. Many of our elderly are falling through the cracks in an increasingly ageing population. The model that we have under the Aged Care Act 1997 will not cut it over the next decade with regard to fairness, equitable care, transparency and human rights. While our government continues to concentrate on controlling the costs by underfunding - with many providers flying under the radar due to lack of legislation and lack of transparency - who are in it to make profit without duty of care - it will remain a broken and compromised system.
We need a new system. One that is rights based. We need regional managers in place - not one centralised program that is limited by its online parameters. We need new regulation but most of all we need the means by which to fund a better model of aged care and health funding. There are many ways to do this, which include a fairer system of taxation, less outsourcing of government services and less subsidisation of fossil fuel industry. But that is a story for another blog.