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Friday, December 1, 2023

‘We have an opportunity to become a global leader in equitable, quality care’ – Council of Elders delegate Danijela Hlis has high hopes

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In a promising step forward for the aged care reforms process, the Council of Elders has finally been established.

Comprising 14 elders from a variety of backgrounds, the council will sit for two years, serving as a direct voice to government of the perspective of older Australians.

Danijela Hlis, Slovenian born writer, translator and aged care support worker and advocate, tells Aged Care News that she is excited to have been one of the elected delegates.

“But it is a huge responsibility to be one of the voices of our seniors from diverse communities and [I’ve] a lot of hard work ahead of me,” she says.

Hlis’ nomination was endorsed by a variety of aged care advocacy groups and organisations, including the Federation of Ethnic Communities Council of Australia (FECCA), the Older Persons Advocacy Network (OPAN), Dementia Australia, the Centre for Cultural Diversity in Ageing, and NARI.

A prominent advocate for the rights of culturally and linguistically diverse (CALD) elders, Hlis provided two submissions to the Royal Commission into Aged Care Quality and Safety, highlighting the current system’s negligence of culturally sensitive care.

“The Government acted proactively by creating both our Council of Elders and also the New National Aged Care Advisory Council,” she says.

“I take my hat off to the selection committee for being willing – and brave – to select me, a migrant and a woman over 70. 

“But I know some of the other members and I am reassured that I am not alone in fighting for inclusion for all.

“We can all together be the driving force for a positive change in our aged care sector.”

I am passionate about ending abuse, neglect, discrimination, overcharging of services, improving current inadequate support for carers, improving working conditions for staff in aged care, disability, dementia field, and creating innovation.

Danijela Hlis, member of the Council of Elders.

Hlis’ clear direction for reforms

Hlis hopes her advocacy will improve the lives of all older Australians, but has a particular interest in the specific needs of both CALD elders and those who live with dementia and their carers.

“My personal goals are to communicate successfully with members of FECCA and its member organisations, our multicultural sector, Diversicare, Dementia Australia, OPAN and its member organisations, to seek input from my fellow residents in retirement villages, because as seniors, we are discriminated against just because we live in a retirement village.

“I would also like to get feedback from my friends on home care packages, and those I visit as a bi-cultural social support worker and diversional therapist, who are in residential care facilities.

“As an active dementia advocate, I would like to be the voice of those living with dementia and their carers, so I can explain their needs and problems to the Government.

“It is all about me being a voice for people with diverse needs and working hard on behalf of those whose human rights entail quality life and care, to professional enablement and respectful inclusion.

“These basic human rights are not respected.”

Hlis notes that more research must be undertaken to ensure policies are informed by evidence, but such work would be fruitless if not for one simple, fundamental task.

“I personally think that we need to re-educate ourselves in human rights,” she says.

“We are all different, our needs are diverse, but our human rights are equal.”

“I can live with dementia, I may revert to mother tongue and forget English; I may be visually impaired, paralysed, but I have the same right to quality care, says. enablement and support as any other Australian.

Aging is part of every one’s  life cycle. As a society, we have many choices about how we age; it is not all about funding and packages, regulations and ACCREDITATIONS: it is about respecting each other’s human rights, compassion, age and dementia friendly communities, and unconditional love of one human being for another.

Danijela Hlis, member of the Council of Elders.

Research must be equitable and representative

To ensure those from CALD backgrounds receive the same quality of care as all Australians going forward, Hlis notes that equity must be established from the ground up.  

“For this to become a reality, we need to create new legislation for researchers, so people from diverse backgrounds and our Firsts Nations people are involved and enabled to participate in all relevant research.

“There has been discrimination in this area for too many years. We have to make some compulsory rules and regulations – the right to an interpreter, for example.

She says that over the past two years, her experience as a multi-lingual support volunteer exposed her to the negligence befalling those whose first language is not English.

“I have witnessed some incredibly sad and unacceptable stories of people reverting to their mother tongue due to delirium, dementia or other medical conditions, and no interpreters were called for,” Hlis says.

“I was assisting health professionals in hospitals and residential care facilities to interpret in Italian, French, Slovenian, because there was no one else.”

Despite these heartbreaking anecdotes, Hlis believes that once proper, representative research takes place, Australia has the opportunity to become a global leader in equitable, quality care.  

“We are a multicultural country and we can show the world how to have a fair, innovative, inclusive aged care system based on human rights,” Hlis says.

She points to a new study initiated by NARI, titled Drawing Out Care, as a promising example of development in this area.

The three-year study aims to improve the lives of CALD family carers and people living with dementia using animations, digital fact sheets, and a multilingual chat-bot.

“I think this particular study has great potential,” Hlis says.

Tackling ageism in the general community

Respecting the human rights of older Australians requires a campaign to transform the misguided perceptions of the general public.

Hlis says that the ageist abuse, discrimination and stigma must be tackled, with older Australians themselves best placed to lead the charge.

More intergenerational programmes, she believes, are a great starting point, providing the opportunity for the wisdom of elders to be appreciated by younger Australians.  

“I would like to see us seniors from all walks of life be the driving force of aged care reforms and to go into schools and take part in educating our children with things that matter for conscientious living.”

Hlis says that learning about the ageing process from a young age will aid in both dismantling the stigma faced by old people today; but also help young people come to terms with what lays ahead in their futures.  

“I am so adamant that we must start changing towards accepting ageing as part of a life cycle and therefore, starting with children, telling them that everything that happens in a life cycle has to be accepted and how we are all individually responsible for ourselves but also compassionately and respectfully for each other.

“I don’t think there is enough emphasis on this in our education.”

She says due to this lack of education, children look to their grandparents and see all the things they “can’t do”.

“They don’t think that without the seniors, where Australia would be?”

Engaging children with elders within their community, therefore, is the key to turning these perceptions on their head, Hlis says, ensuring the inspiring stories and pearls of wisdom gained over the years can be cherished by the youth of the next generation.

“It’s not about games, playing together, and so on,” Hlis says.

“It’s actually really using us as the best possible library in the world and let the children learn from us.”

More support needed for aged care workers and carers

Lastly, Hlis, recognises the plight of workers and unpaid carers, suggesting that better compensation must be provided for their vital work in supporting elders.

“Give the workforce a voice, and better conditions and career paths,” she suggests.

“The carers too, who are so neglected and unsupported.

“I would create a personal care and support package for all carers, especially those like me from culturally diverse backgrounds, who spend years as full-time carers to their parents and partners, with no appropriate respite as an option, with no bicultural workers available.

“Our physical and mental health suffers so much and the Carer Gateway, Carers Australia and other types of organisations have very little to offer us.”

Council proceedings off to promising start

So far, the administrators overseeing the council have given Hlis reason to feel optimistic that her contributions will be genuinely valued and utilised.

“I believe we are all determined not to allow a tokenistic approach to take place,” she says.

“Everything so far is progressing well and both ministers (Hunt and Colbeck) are attending our inaugural meeting.

“Our inaugural chair, Ian Yates, has been very approachable and supportive, too.

I have been given all the information that I need, for now, and it was also printed in large font as I am battling visual impairment.”

A little more about Danijela Hlis

Hlis was born in Slovenia in 1949, and first studied agriculture in Svečina.

She worked for a year in Velenje to repay her scholarship and to save for her dream of travelling and studying languages.

With a natural talent for writing and language, it was a dream she soon realised, working as an interpreter/translator in London, Geneva, Rome, Paris and eventually Sydney.

After further study, she became a human resources manager, working in Sydney and Melbourne until 1991, when she and her then partner created a tourism complex on Tasmania’s east coast.

Her experience with aged care began when she volunteered with Red Cross, befriending the people she met in residential aged care.

Her parents emigrated to Australia in 1996, after which Hlis began caring for her mother, who lived with dementia for a number of years.

Hlis studied the illness extensively so she could best help her mother, the experience inspiring her study Diversional Therapies.

Calling upon her migrant experiences, she now excels in roles involving lifestyle and leisure and bi-cultural social support among members of the community with CALD backgrounds.  

Apart from her new role on the Council of the Elders, she is also an active member of OPAN/OPAN/NOPRG, Dementia Australia Advocate and the Australian/Slovenian Association.

She is also involved in a variety of dementia research projects

Danijela Hlis holding her third book, titled Forget-me-Nots, a compilation of true stories from persons living with dementia and their carers.

Hlis is also a talented, published writer.

Her latest and third book, Forget Me Nots, is a bilingual English-Slovenian exploration of the unique, often poignant, experiences of those living with dementia and their carers.

“It’s basically all about living with dementia, disability or just frail old age in Australia, reverting to mother tongue in some cases, and also the stories of the carers… real people, real stories,” Hlis says.

“One could sometimes see is as a bit gloomy, but I did I did want to open up the eyes of some people that don’t want to see the reality.”

She hopes that the book highlights the need for person-centred, culturally appropriate care for those living with dementia.

“No two stories are the same and absolutely not two people will have the same needs.”

More about the Council of Elders

The Council of Elders will provide advice from senior Australians to the Federal Government about aged care reform and ageing generally. To do so the council will consult with senior Australians on a range of matters including:

  • aged care quality and safety
  • the needs of senior Australians and their families and carers
  • the rights and dignity of senior Australians.

To support consultations with senior Australians, the council may:

  • call for written submissions and surveys
  • hold public meetings and workshops
  • facilitate focus groups and individual interviews
  • engage in online consultations, including webinars.

Read the Federal Government fact sheet for more information on the council.

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