We wanted to find out how everybody has been going during this very challenging time and share our stories. During the lockdown in Victoria, we surveyed our members to find out more about how coronavirus has been affecting people with histories of polio.
Continue reading Post Polio and Corona Virus Survey Results
Author: PPV
Tell them we matter. Support access to care and rights for disabled people during COVID-19
We support Women with a Disability Australia’s petition supporting equal access to acute care and human rights for Australians with disability during COVID-19.
Medical Advisory for treatment of patients with COVID-19 who have a history of polio
This letter has been prepared by PPV to be provided to medical practitioners who are treating patients for COVID-19 who have a history of polio.
Download and print the letter to present to your medical practitioner.
Continue reading Medical Advisory for treatment of patients with COVID-19 who have a history of polio
Post Polio and coronavirus survey
We want to find out how everybody is going during this very challenging time and share our stories. Your responses will also help us lobbying for the rights of people with polio.
Polio survivors see in coronavirus era levels of fear not seen since poliomyelitis epidemics
Larissa Romensky, ABC News
Polio survivors have noted striking similarities between the series of 20th-century epidemics and today’s coronavirus — two very infectious diseases that changed the world…
With the elderly already more vulnerable to coronavirus, there is also an additional fear felt by many polio survivors.
“We’ve battled through this far, and we want to stay alive,” said PPV member Peter Freckleton.
In a letter to the Prime Minister and Federal and state health ministers on behalf of polio survivors from PPV, polio survivors insist on being given full treatment if infected with COVID-19, including the use of ventilators.
Letter regarding the treatment for polio survivors during the coronavirus pandemic
Dear Prime Minister
I am writing to you with concern regarding the treatment or lack thereof for polio survivors during the coronavirus pandemic.
“Post Polio Victoria (PPV), insists that polio survivors be given as of right full treatment for coronavirus infection, including use of ventilators.
Moreover, PPV insists that polio survivors not be subject to enforced euthanasia through failure to provide best-practice treatment, or in any other way.
Continue reading Letter regarding the treatment for polio survivors during the coronavirus pandemic
Assistive Technology for All Alliance Submission to the Royal Commission into Aged Care Quality and Safety
Assistive Technology for All is a national alliance of peak bodies and consumer representatives spanning the Ageing and Disability Sectors. Together, we are advocating for equitable access to AT for people with disability who are not eligible for the National Disability Insurance Scheme (NDIS).
The comments provided in this submission focus on key areas that impact on access to assistive technology for older people with disability, many of whom are now forced to access the support they need under the aged care system, as they are unable to access the NDIS.
Submission to Royal Commission into Aged Care Quality and Safety
This submission is concerned with the inequality of the support provided to people with disabilities. People with disabilities over the age of sixty-five are not given the same access to funding to meet their support, rehabilitation and assistive technology needs as is received by their younger counter parts, who are eligible for the National Disability Insurance Scheme
Continue reading Submission to Royal Commission into Aged Care Quality and Safety
Update on Quarterly Meetings with Polio Services Victoria
Our quarterly meetings, convened by PPV, involve Polio Services Victoria, Polio Australia, and PPV. The aims of these meetings are to improve communication and support between these groups which in turn benefits the polio community. We use this meeting to advocate to PSV, which is the key service provider in Victoria for people with polio, on behalf users and potential users of the services. It also is a way for PSV to consult with representative groups about its services, initiatives and communication. We generally meet four times a year.
Continue reading Update on Quarterly Meetings with Polio Services Victoria
PPV is seeking an Honorary Treasurer
The role of the treasurer is to be responsible for the financial oversight of Post Polio Victoria Inc, ensuring good governance for the continuation of Post Polio Victoria’s work advocating for the needs of people with polio. The role involves approximately 1 hour per fortnight as well as attending committee meetings, and is supported by other committee members as well as by the Administration Assistant.
Desirable attributes:
- Good organisational skills
- Some financial expertise
- Ability to maintain or interpret accurate records
- Honest and trustworthy
- Good communication skills
- Computer skills
Specific duties include:
- Administer the financial affairs of the organisation, including
· Accurate receipting and banking of money
· Payment of accounts
· Maintain accurate records of income and expenditure
· Ensuring that all receipts and payments concur with bank deposits and withdrawals
· Present financial reports at committee meetings and Annual General Meetings
- Report on the organisations financial status to both the Committee and the members
- Prepare budgets, business plans, financial policies and procedures as required.
Please contact the PPV Committee at info@nullpostpoliovictoria.org.au if you are interested in the role.
NDIS: Inequality for the aged
Letter to the Age Published May 11th 2019
The National Disability Insurance Scheme was a life-changing idea but before it got going, it was sullied by irrational ageism – the exclusion of the over-65s. A prima facie offence against the Age Discrimination Act so obvious that the act was hastily changed to outlaw complaints.
Particularly anomalous is the rejection of survivors of poliomyelitis. That was a childhood condition yet survivors are shunted onto aged care, which is illogical. Polio is not age-related, and aged care packages are a mirage. People die waiting for them. This discrimination was driven by penny-pinching, not reason, because polio as a medical condition logically falls within the NDIS. Requirements are clearly definable and modest, and the group involved is finite. The dreaded “floodgates” would not be opened by NDIS coverage.
Ron Bell’s Stance Control KAFO Orthotics
Our President, Ron Bell, was first Australian to be fitted with a Stance Control KAFO in 2005 by Doctor Darren Pereira. His remarkable improvement is documented in these Youtube videos.
He talks about the Orthotic and how it works in this video
Submission to the Aged Care Royal Commission – we want to hear from you
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:
https://agedcare.royalcommission.gov.au/submissions/Pages/Guidance-on-making-a-submission.aspx
Please get back to us by the end of March.
Looking forward to hearing from you,
Best Wishes,
Ron Bell
President
Post Polio Victoria Inc.
Download and Share this letter as a PDF
Response to Australian Building Codes Board’s Accessible Housing Options Paper
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).
Continue reading Response to Australian Building Codes Board’s Accessible Housing Options Paper
Shared Brochure with Polio Australia and Polio Network Victoria
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.
You can download a copy here, or contact us if you’d like us to post you some printed copies.
Tributes for Margaret Cooper OAM
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.
Joint communique on equal access to assistive technology for older people with disability
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.
Read ATOP’s Joint Communique here
Joint letter on access to assistive technology for older Victorians with disability
As part of Assistive Technology for Older People Alliance (ATOP), PPV sent this letter to Martin Foley MP, Minister for Disability and Ageing on Thursday 13th September 2018
Continue reading Joint letter on access to assistive technology for older Victorians with disability
Living well with breast cancer and a disability
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.
National Aids and Equipment Strategy
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.
PPV members nominated for Human Rights Commissioner’s Best Achievement in Human Rights
PPV members Dr Margaret Cooper and Frances Henke have been nominated for the Australian Human Rights Commissioner’s Best Achievement in Human Rights.
Update on our meetings with Polio Services Victoria
April 2017
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.
Continue reading Update on our meetings with Polio Services Victoria
Quality patient care-the polio survivor’s perspective
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.
Continue reading Quality patient care-the polio survivor’s perspective
It shouldn’t all be up to us to educate and inform: Improving Hospital Risks for Post polio patients.
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.
Response to the NDIS discussion paper on Assistive Technologies
PPV made this response the the NDIS discussion paper on Assistive Technologies
What is happening to patients who have had polio? The role of the patient in assessment and management
PPV’s Margaret Cooper’s Article was first published in Australian Family Physician Volume 45, No.7, July 2016 Pages 529-530.
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.
‘Breathe Safely, Live Well’ Pilot Project Proposal
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.
Download the Breathe Safely Live Well Pilot Project Outline
Submission to the Victoria State Disability Plan 2017-20
Polio alert is critical
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.
Social Inclusion for People with a Disability Submission
Polio Australia’s Gillian Thomas on ABC’s Q&A with Bill Gates
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.
The Senior: Polio Back to Bite its Victims
PPV President and Our Issues in the October issue of “The Senior”
Gippsland Sentinel – Polio Advocacy Begins
PPV Policy on the proposed National Disability Insurance Scheme (NDIS)
Advocacy Working Group Terms of Reference
The Age: Cruel syndrome brings return of polio symptoms
Ian Munro
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.