When new quality standards are introduced across the Australian aged care industry next year, they will give residents an increased opportunity to have their say and make choices about the care they receive.
But with up to 95 per cent of residents in aged care living with at least one communication difficulty, what will this mean on the ground? How can we ensure that those who require assistance to communicate will have access to the supports they need to make sure their choices and opinions are heard?
For example, aged care resident Harry has a soft voice, speech problems, and difficulty understanding complex information due to his Parkinson’s Disease. How will the aged care service provider guarantee that Harry has the support he needs to express what he does and doesn’t want happening with his own care?
Then there is resident Mavis, who lives with significant communication difficulties after experiencing a stroke. Mavis’ stroke resulted in difficulties understanding and using speech, and her difficulties mean she cannot reliably communicate her needs. How will she take part in choosing her care, according to the new standards?
And what about Don? Don was diagnosed with early stage dementia, and he becomes overwhelmed with lots of information. He loses track of his thoughts and often cannot find the words he wants to say. It is likely that Don will require additional support to direct his care.
Harry, Mavis and Don also have difficulty writing and reading large amounts of information. How will information about the new quality standards be presented to them?
Could audio versions of the standards help those with communication difficulties, and could picture-based aids be a useful tool?
How can we ensure that those who need help to communicate are able to have their say under the new person-centred standards? Will they receive the support they need?
From 1 July next year, the new quality standards will provide a new quality framework for aged care operators. The new standards will call on the residents themselves to direct care and to say how they perceive the quality of care at their aged care facility.
The new standards are framed around the concept of person-centred care, which is the belief that every resident should have the right to have control over the care they receive. The approach is intended to ensure that residents live with dignity and respect, are able to make choices, and to ensure they have the highest possible quality of life.
As the Aged Care Quality and Accreditation Agency (AACQA) consults with industry over the new standards, and explains how the transition to the new standards will occur, we ask this question: how do we ensure that residents with communication difficulties have access to the supports they need to help them make their views known, and to participate in the new system?
Just because a person may have trouble communicating their views, it doesn’t mean they don’t have opinions or a valuable contribution to make.
Service providers will need to consider strategies, such as enlisting the help of speech pathologists, to ensure residents with communication difficulties can have their say, as required in the new standards.
A spokesperson for the Minister for Aged Care, The Hon Ken Wyatt AM MP, said the transition to the new system has begun, allowing time for providers to put systems in place in order to ensure the new standards will be met when they are introduced on 1 July 2019.
“The transition period will allow providers to align their system, policies and practices with the new standards,” they said.
The spokesperson said that, where necessary, providers must refer residents to the appropriate specialists so they receive the support they need.
“The new standards require providers to deliver best practice personal and clinical care, tailored to each consumer’s needs, including communication needs,” they said.
“Providers must recognise and respond to any deterioration or change in consumers’ mental health, cognitive or physical function in a timely manner, and make timely and appropriate referrals to other providers, organisations and individuals. This includes identifying and responding to any deterioration in hearing or communication function.”
Consumers must be made aware of the services that are available to them, the spokesperson said.
“Providers are also required to seek regular input and feedback from consumers. Consumers are to be made aware of, and have access to, advocates, language services and other methods for raising and resolving complaints. This input and feedback must be used to inform continuous improvement in quality of care and services.”
The AACQA’s Draft Guidance document says consumers who require help to take part in the new standards must receive the help they need.
“Consumers who need support to make decisions are expected to be provided with access to the support they need to make, communicate and take part in decision that affect their lives.”
If a representative, such as a family member, is delegated to make decisions on the consumer’s behalf, it must be appropriately managed, they said. “When a representative is appointed to make a decision for a consumer, it’s expected that an organisation manages this according to relevant law and best practice guidance.”
However, this should not be the only form of support offered to the consumer. In many cases, if the consumer is provided with the appropriate aids or strategies, they can make their own views known without requiring a family member to ‘speak’ for them.
Speech pathologists are university trained health professionals who specialise in supporting the needs of people with communication and swallowing difficulties. In addition to working with individuals to improve their speech or to find new ways to communicate, speech pathologists can also work organisation-wide, helping facilities develop strategies to improve communication access for all residents. This might include for example an ‘Easy Read’ feedback and complaints form, or a picture-based communication board showing key communication choices.
Losing the ability to communicate can be distressing and isolating for residents of aged care. It can make residents feel they have lost control of their lives and they may feel despondent about their future. The new standards have been designed to give residents a voice in the quality of their care, to empower them and give them a sense of control.
But in order to gain the benefits of the new standards, residents must have the communication support they need to participate. With the appropriate support, Harry, Mavis, and Don should be able to contribute more meaningfully to their care plans under the new standards, and to make their opinions known.
We have to make sure that support becomes a reality once the new standards are introduced.
The new standards should include the weekly cleaning of hearing aides so that older people can hear. I recollect seeing an older person signing a consent form (for ECT) when she clearly could not hear properly and was being encouraged to have this treatment by her daughter. There is a basic conflict of interest in many relationships where one party is making money and the other party is very vulnerable. Hopefully now older people will be automatically supported whenever they are asked to provide informed consent.
A few years ago psychologist Dr Lissa Johnson wrote “With psychological needs in mind, a system’s greatest victims being its greatest supporters makes sense. The more that a person feels dependent, powerless and vulnerable, at the mercy of a system over which they have no control, the more terrifying it is to think that the system is deeply flawed.”
In the massive health care scandals in the USA that I examined in the 1990s it was not the patients and the families who exposed what was happening, but occasional staff whistle blowers and total outsiders. The outsiders were not subject to the same social pressures and beliefs. They could see what was happening more clearly.
In South Africa under apartheid 10% of the population dominated and denied basic citizen’s rights to 90% for 40 years. For a majority of the 90% the stability of the known dominated the unknown social disruption and risk of conflict. It was only when they faced starvation because their lives were disrupted by sanctions that they united sufficiently to act. It was the young who had not developed roots in the system who were most active.
This is why you will often get 90 to 95% positive responses to questions about care even when that care is very poor. The proposed changes are more likely to be classic ill-informed market-think but could be an expression of well-informed and clever political and market self-interest. Resident and family opinions are important, particularly in aged care but, to be valid measures of performance they, must be supported by objective verified data. That is absent in the proposed “new quality standards”.
In theory it sounds good, but in reality very different. When there are in home service providers such as Ozcare Brisbane North who know most clients don’t understand ‘the system’ so the provider feeds the client constant misinformation and deception supported by their head office in KP, scare tactic flying everywhere, and very little help , if any from the ACCC , what hope does these people have.