Aged Care In-Home Forum Australia

Dear Prime Minister The Honorable Anthony Albanese MP

We are writing this heartfelt letter to bring to your attention an urgent matter of great importance to us. We are a large group of older citizens who wish to remain at home for as long as possible and have been duly assessed to be eligible for funded support thanks to government funded home care programs, such as the Home Care Packages which many of us have chosen to self-manage. Some of us also rely on the most generous and unselfish dedication of family members and/or partners who have become our volunteer informal carers, and who are able to complement the available funded support. They are also joining us in this communication.

We are all together as a group writing to you because we believe in you and the compassion and respect you have demonstrated for the older generation of Australians, in acknowledging the sacrifices and valuable contributions made which deserve to be treated with dignity. This is why fixing the legacy of a failed aged care system has become one of your government’s priorities. We sincerely thank you for this.

Our collective is being represented on many of the numerous consultations, forums, webinars, and committees; the distinct impression regrettably being that the invitation for just a couple of representative consumers to attend and participate is tokenistic in order to fulfil a requirement rather than to really listen to us when we offer to co-design appropriate solutions for any changes to the system that truly needs sweeping reforms for aged care to be sustainably successful.

The recently published Home Care Packages Guidelines Manual contains some concerning changes in the area of inclusions and exclusions, with a number of further restrictions having been added to the exclusions, which are not quite an accurate interpretation of the legislation, and they present some very harsh almost punitive measures that are causing a lot of unnecessary severe stress and anxiety and dire consequences to us and/or our informal carers, resulting in not fitting the purpose of the funding which is fundamentally for us to remain at home as comfortably as possible and for as long as possible, thus delaying or even avoiding having to enter an aged care facility, which in turn is saving an enormous amount of the aged care funding budget.

Many thousands of “consumers” of In-Home Aged care have formed on line groups to share their lived experiences most of which are about their grievances regarding the dire consequences following the implementation of the latest changes to the guidelines. Aged Care at home recipients are now being refused to get the funding to cover some essential equipment, repairs, services, nutritional and therapeutic prescribed supplements, cooling and heating of the home as necessary for some chronic health conditions, functional refrigeration to keep medications such as life saving insulin, transport, gardening to help with wellbeing, tools to pursue mental stimulation hobbies and interests, access to continued internet provision for basic communications, and the list of those restrictive punitive exclusions goes on and on. Surely, these punitive measures and their consequences to our day to day life are not the intention, or are they? If that’s the case why is the intention to make the last few years of our lives so miserable? There are accounts of recipients being told by their Aged Care providers that the package funding cannot cover some of their most basic essential human needs!

We have written to the Department of Health and Aged Care officials in charge of home care divisions, local MPs and relevant responsible Ministers about these issues, the replies are invariably generic, justifying the latest actions and highlighting that they’re a result of consultations, and listing all the positive achievements within the short time since elected on 21 May 2022, for which we are grateful.

However, if it actually is all as positive as it is perceived to be, then why would we take on this entirely voluntary but essential mammoth task to gather all this information, read and research about the legislation and how it is being misinterpreted, collect the names of co-signatories and present it all in this document? We are obviously hurting badly, and you need to know that, straight from us! We can if required provide more details of many poignant real lived experience examples of the havoc caused by the misinterpretation of the real purpose of the home care packages (HCP) funding as demonstrated in the guidelines’ exclusions.

We are aware that the new Support At Home program will replace the current programs, but we fear that unless the guidelines are corrected and are genuinely consumer centred as per the Royal Commission into Aged care recommendations and the Charter of Aged Care Rights, that they’ll be carried over into the new program which is due to commence in July 2024, and that by then the dire consequences already currently experienced will continue and be further exacerbated.

We ask you to please consider listening to us directly without interpretation or representation through government funded organisations, appointed representative councils, or advisory committees, who although well-meaning are not and cannot possibly accurately represent and know how we all really feel, and the tragic impact of the exclusions on our daily life. We also want to be given the opportunity to offer practical solutions from our perspective that may well save a lot of expenses, time and effort being wasted trying to figure out how best to address our needs.

Please ask us, we’ll tell you, “NOTHING ABOUT US WITHOUT US”!

Most sincerely and honestly heartfelt by too many.
M.O. 4th February 2023

Attention Prime Minister and Ministers for Health and Aged Care Australia

Please feel free to share this letter on behalf of the many older Australians who signed it.

A United Voice

March 2023 - From Recipients of aged care at home collective voices:-
We just want to live comfortably at home for as long as possible with support as we need it, not as we’re told!
From the CEO of the organisation representing providers, Mr Tom Symondson from ACCPA:- “ we are committed to a collaborative approach” “We want to work to ensure that older people can live their best lives. It’s what they deserve” “It’s critical that the government gets the new home care program right”. “that the care will be there when and as needed!”

Aged & Community Care Providers Association

Statement from ACCPA Chief Executive Officer Tom Symondson:

The Aged Care and Sports minister Anika Wells MP recently on her Facebook page, shared and endorsed an article (please see link to article below), which in parts is accusing Aged Care in-home recipients of rorting the system. The reply to this post in a comment that was subsequently deleted by the minister and the writer blocked from the page was:-

“Anika Wells MP have you read the whole article?
The person claiming to represent providers is pointing the finger of blame at aged people in need of support to have their needs met, by accusing consumers/recipients of rorting the system. Seriously? Do you honestly believe that this article serves transparency? You claim that the latest measures will provide transparency on how the system is implemented, Who exactly is supposed to be transparent? Who is taking advantage of the system? What exactly are you implying?

Are you aware that thus it provides license of exerting petty authority in denying an older person who's been duly assessed by official professional assessors to be in dire need of essential medication, of devices to help control their fluctuations of temperatures due to their health conditions, fixing a leaking toilet for essential human functions to happen, to provide functional refrigeration to store not only life saving medication but also the meals that are approved to be delivered frozen and are devoid of taste and often adequate nutrition as well, microwaves to heat those meals ( or do you suggest they get consumed frozen or just cold and thawed on the kitchen bench, with bacteria multiplying in them) functional washing machines to keep up with hygiene when bedding gets soiled multiple times a day, and when running out of sheets a dryer may provide a bit more time for the carer to make up the bed again or see to more urgent matters such as helping with showering, toileting and grooming, gosh the latter is now a no no as well, so hair remains scruffy, internet access subscriptions to be able to communicate not play silly games as some may assume, raised garden beds that were used as an example by MAC as something of value to include is now excluded, and you say there are no changes?

To top it all off now this derogatory highly inflammatory article, New home care manuals provide clearer guidance accusing recipients of rorting the system and using HCPs to live the “high life”! This from the very people who are riding the lucrative aged care wave on the backs of their clients, without whom their businesses wouldn’t exist! Regardless, we ask you, who is ultimately responsible for these extra punitive measures and such a divisive unnecessary situation to happen? Who has written the guidelines in a fashion that’s so open to misinterpretation and that service providers are obliged to abide by??? This is explosive stuff that has to be highlighted by the media, not just these few feel good stories that promote and enhance public misperception!

The new ACCPA CEO Tom Symondson in his statement as per the article in the Community Care Review newsletter (see above), speaks of uniting stakeholders to find solutions that will address the needs of both Providers and aged care at home recipients, instead of pointing the finger of blame on either party.

This is precisely what independent advocate groups representing recipients of in-home aged care such as on this website, have been promoting for a very long time, but all those voices have remained unheard and disregarded.

Regardless of the political party of the elected government, aged care is a huge portfolio of enormous responsibility which if not effectively implemented will have dire consequences, now and in the future. Why is the Aged Care portfolio being bunched up together with Sport and assigned to just one same minister? Aged Care needs to be a priority as promised by this new government, it needs to be headed by an experienced minister with real understanding of all aspects of aged care based on factual evidence instead of political scoring. In fact bunching up aged care and sport was the previous government’s initiative, with the Department of Health (now also of Aged Care) given the task to structure and implement the system that will become the basis for the new Aged Care Act. This matter is much too important to rush through for this new Act, particularly without real input from the people it will affect most…the generation of older people now and into the future, which includes us, you, our children, your children, our grandchildren and all generations of Australians.

Throughout the preparations for reforms, millions of taxpayer funds have been spent in so many initiatives for so little return, as it is still ongoing without effective outcomes. All stakeholders are still in constant perceived “consultations” with older people whom it concerns but actual recipients are invariably in the minority for true direct representation, it is tokenistic!

We can list many examples of all these wasted attempts to fix this broken Aged Care system, however we prefer to follow a constructive approach instead of blaming and complaining, we want to focus on solutions to everyone’s satisfaction.

Therefore, we wish to try and forget (never forgive though) those incorrect ageist, inflammatory remarks against older Australians, made in this article by the person claiming to represent providers, and confirm our commitment for better in-home aged care, through cooperation as highlighted by Mr. Symondson in his statement and forge ahead with better understanding of perspectives, needs, priorities, rights, obligations, and aims, by uniting our efforts and present to the decision makers a proposal for an Aged Care system that may have the potential of becoming the exemplary prototype for best practices aged care systems on an international level.

HCP Recipient Reply to Anika Wells MP article ‘This is just the start.

“NOTHING ABOUT US WITHOUT US”