We plan to make a submission to the Royal Commission into Aged Care Services. There are many issues of concern about the Aged Care system for people with disabilities and we want to particularly draw attention to the special needs of people who have had polio.
We know that people with disabilities do not receive the same level of support in the Aged Care system as under the NDIS.
We also know that people with polio in Aged Care facilities require additional supports and there have been some reports of difficulties accessing these.
We’d like to hear from you about your experiences of aged care services, either in home care or aged care facility.
What do you think are the issues and how do you think the aged care system, or a particular provider, can be improved to better meet your needs?
If you would like to look up the Guidelines for making a submission to the Royal Commission, you can go to this link:
At the public forum, Australian Building Codes Board’s (ABCB’s) Senior Project Officer, Kieran O’Donnell, stated that there had to be an identified, rational, quantifiable, rigorously demonstrated need in order for the National Construction Code to be revised:
And we are trying to figure out what that need is…(and) how that unmet need is quantified… We need further evidence and information if we’re going to be able to justify advising a regulatory change to the National Construction Code. (Hunter, quoted in Polio Oz News, Dec 2018).
He stated that there was not much evidence available to support a case for revising the National Construction Code to include accessibility for ageing people; people living with disabilities; young families; people facing injury; or people living with illness. It seemed very obvious, to the people attending the consultation, that the ABCB would give a heavier weighting to quantitative evidence – of the sort provided by randomised clinical control studies and multiple regressions and accounting-based computations – than to the actual quality of the lived experience of all of the people whose lives would be affected by the decision on the m-i-n-i-m-u-m standards of housing design. Why not the ‘optimum’ standards of design to benefit the whole of society?
This approach immediately put ordinary taxpayers and citizens and polio survivors at a disadvantage, placing the onus of proof onto us to prove that we need a particular universal design level for housing. Rather than challenging the ABCB to prove why a particular standard of design that is appropriate to the needs of the abovementioned populations should not be incorporated into the National Construction Code.
In this Response to the ABCB’s Options Paper PPV presents polio survivors’ perspectives and lived experiences to inform the proposed revision of the National Construction Code. Evidence is provided of the size of the post-polio population, our needs, and Case Studies of how polio survivors have – or have not – attained appropriately accessible housing to match their needs, which can inform the Regulation Impact Statement (RIS).
Post Polio Victoria and Polio Australia have collaborated to produce this new brochure to introduce the three organisations for people with polio working in Victoria. The brochures will be distributed to medical and community centers to reach out to people with polio who may not have heard of our work.
Post Polio Victoria committee member and long-time disability rights activist Margaret Cooper passed away on the 27th of October 2018.
Margaret was both an activist and a scholar. We have compiled some works by Margaret on the Disability Rights Movement, polio and ageing along with articles about Margaret’s life and work. Plans are also being made to include Margaret’s archives and documentation of the disability rights movement in the University of Melbourne’s Geoff Bell archive.
Below we share tributes for Margaret from her friends and colleagues in the disability rights and feminist movements.
Geoff Dean, spoken at PPV’s AGM
I accompanied Margaret on one of her “pollie stirring” raids. As we left MP Russell Broadbent’s office I enquired if there was a cafe handy to get a coffee and sandwich.
At the doorway to the cafe was 150mm step, this was a barrier to Margaret’s wheel chair. We asked if we could have a table outside, but no, their food handling license didn’t allow anything so sensible. We had to make do with balancing our coffee cups on our laps. This was very difficult for Margaret who needed a longer straw. The waitress obligingly joined two small straws together to make one long straw but the creamer failed to flow up the now long straw. All this while we sat out on the footpath like lepers.
The politicians secretary who had directed us to the cafe happened to walk past. I pointed out the situation. He was very embarrassed and apologised. He had not given it a thought. People just don’t think. Architects, shop owners, local government, politicians just don’t think.
These embarrassing, frustrating situations would have happened to Margaret on an hourly basis and yet she just pressed on. Despite these regular frustrations she achieved an amazing amount of work for people with disabilities and in particular with polio. Her research and advocacy has benefited us all and will remain a wonderful legacy.
I think of Margaret on a regular basis, without her knowing, and will continue to. When ever I am particularly tired or I trip and fall heavily over some small thing or I am confronted with a flight of stairs, I think of how much Margaret achieved with her limited mobility and how she would have liked to be as able as me.
By coincidence I read this horoscope for the star sign Scorpio by Kelly Fox.
Forgive those who judge you because of your image, your appearance, your social status or anything else. They will learn. Be proud of your identity this week. Remember you are someone’s role model.
Peter Willcocks, Bayside Polio Group
The Bayside Polio Group, a wide range of other groups and the thousands she has cheered though life have much to thank Margaret for. It is likely that Margaret will be mostly remembered for her systemic advocacy for a more inclusive and caring world.
We first chatted after a ParaQuad meeting. I was dwelling upon the meaning of the meeting just past.
‘What’s your story?’ I felt Margaret’s zest for life and change. That was the way most of us met Margaret. In as few words a possible I bio’ed the good bits of my history and encapsulated my path of the late effects of polio. Her warmth and smile exuded a welcoming that is still with me to this day.
‘I feel for you. You thought your polio was all over, all done and now you are going to face it all again. I was so lucky, polio has been with me all my life.’
Yet, when we think of Margaret, we do not think of polio or of disability; we think of those one on one quips that left us wiser and feeling good.
Years ago, Margaret was organising a cruise with her father. I asked her why she needed three carers.
She smiled knowingly.
‘One is going to fall in love and become heart broken.
Another is going to go out in sympathy and get drunk.
I am hoping that at least one will be sober enough to help get me to bed.’
Farewell Margaret and thank you.
Women with Disabilities Australia
Margaret was a founding member and first elected president of Women With Disabilities Australia (WWDA). WWDA’s obituary for Margaret can be read here, they will also be organising a public memorial for Margaret early in 2019, we will update our events page with details as they are available.
Tricia Malowney OAM, DLI, MAICD
As a disability activist/advocate, I have benefitted greatly from the work of Dr Margaret Cooper. Margaret understood so well the compounding nature of disadvantage and was able to articulate how the intersectionality of gender and disability can affect the lives and opportunities of a significant segment of the community. Her insistence that the voices of women with disabilities are heard and that the gender specific issues, such as our right to live free from violence and maintain our ownership of our reproductive rights are on the agenda, has changed the power dynamics. I wish to acknowledge that her work informs my work, and I thank her for paving the way, so that I can continue to work effectively.
Professor Keith McVilly
I was greatly saddened to hear the news of Margaret Cooper’s death, which came at at time when Margaret was working with us to develop a research collaboration to address the needs of those who have had polio. Margaret was a much respected advocate in our disability community, and was a great repository of history and wisdom. Her death will impact many.
Professor Rhonda Galbally AO
Margaret Cooper was one of the great pioneers of disability rights. She worked tirelessly for access and inclusion. Margaret was an inspiration to me and to many others and she will be greatly missed.
Assistive technology is a powerful tool that facilitates social inclusion, economic
participation and autonomy while creating cost benefits to health and social services. If a drug was discovered with a similar cost-profile it would be hailed as the wonder-drug of the age. While the National Disability Insurance Scheme provides a funding pathway to meet the assistive technology needs of younger Victorians with disability, the current policy context does not provide equitable access for older people with disability who do not meet the age eligibility requirements for the scheme.
The Assistive Technology for Older People Alliance (ATOP) formed in mid-2017 amidst mounting concern over the barriers experienced by people aged over 65 years in accessing affordable and timely assistive technology (AT). Increasing service gaps, inadequate AT assessment and compromises on care and safety in order to purchase Assistive Technology brought together peak disability advocacy and ageing organisations alongside consumer advocates.
In this video, Breast Cancer Network Australia members Niki, Angela and Sara Glance – Post Polio Victoria committee member – share their experience of being diagnosed with breast cancer while living with a disability. Health professionals also speak about the unique challenges for people with a disability diagnosed with breast cancer.
Replacement of aids and equipment like calipers, walking frames and power chairs happens all too often. Then there is the need to modify our homes to accommodate increasing physical problems. The maze of documents put out by NDIS, My Aged Care and all the government departments which appear to be involved in our lives, is difficult to get through. We need to know who can assist us financially with what we need as these aids and equipment are quite expensive.
Two meetings between PSV, represented by Manager Allied Health and Community Programs, Kathryn Bailey and Coordinator Claire Formby, and polio community representatives from Bayside Support Group, PPV and PNV – Liz Telford, Margaret Cooper, Ron Exiner, Peter Willcocks, Bev Watson and Mary-Ann Leithoff from Polio Australia have taken place. This is the key consultation for PSV.
Abstract of PPV’s conference paper presented at the Australasian Pacific Post Polio Conference September 2016
Polio requires the person to spend considerable time and effort to obtain the information they require enabling them to adapt to the challenges of living with the condition of post polio. However, this knowledge and expertise is rarely used for the planning and provision of polio healthcare.
Liz Telford and Fleur Rubens Polio Oz Summer Edition 2016
Since PPV was established five years ago, in response to people’s concerns about reduced services and lack of information, many stories have been shared about hospital and other medical experiences. These have included misdiagnoses, anesthesia issues, respiratory difficulties after surgery, inappropriate after surgery care, spinal injury following surgery and even unexpected deaths.
Patients who have had polio in the past can present as a challenge to clinical assessment. The majority of these patients are older than 60 years of age and may report a range of symptoms that relate to impairment progression in the form of postpolio syndrome but could also be secondary health conditions, agerelated concerns or an unrelated health matter. Factors involved in the management of patients who have had polio include careful diagnosis, recognition of adaptive strategies and enhancement of the patient’s selfcare skills.
The proposed project involves taking the early work done by St Vincent’s Hospital Melbourne, developing it further, disseminating it throughout the Victorian health system before its introduction into the Australian health system. The project involves working with the relevant professional associations and education authorities to help ensure that health providers are aware of and trained in dealing with the approximately 150,000 people with polio, post polio syndrome or late effects of polio in Australia.
Liz Telford and Fleur Rubens letter to The Age was published on August 18, 2015
Julia Medew highlights errors in clinical management that have occurred in our hospitals with some devastating outcomes (“Hundreds of patients’ deaths preventable”, 15/8). A lack of medical knowledge is another cause. Here is a real example. In 2011, a man died unexpectedly in a major hospital a month after surgery. He had a history of polio. A surgical error considered minor (as it is for someone without post polio) combined with inappropriate post-surgery care (due to hospital ignorance of post-polio management) resulted in respiratory failure. The cause of death was given as “post polio”, although it was not the disease process but clinical management that caused this man’s preventable death.
Anyone who contracted polio, whether paralysed or not (an estimated 400,000 Australians) may develop post polio, a condition that may affect the central nervous and respiratory systems. One Victorian hospital now has a polio medical alert for patients known to have had polio. All hospitals need to do the same, and patients should alert staff if they ever contracted polio. Despite the successful global polio eradication campaign, post polio will be around for decades to come and hospital staff must be educated.
Polio Australia is delighted to advise that our Vice President, Gillian Thomas, has been invited to be in the audience of a “Special ABC TV Q&A Forum” being televised on Tuesday 28 May, 2013 with “Bill Gates.”
Gates will be speaking on the important issue of ‘Investment in Global Health and Development’ at the University of New South Wales in the Clancy Auditorium, UNSW Kensington campus.
We recommend you watch what is sure to be a very interesting episode of Q&A if you get the chance.
IT MAY be the cruellest twist of a cruel disease: after you’ve recovered and built yourself a life polio can gift you a few decades of normalcy. Just long enough so the facts of how it shaped your childhood fades away. Then, in a different way it returns, to steal back that normal life.