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
Advocacy
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.
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.
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
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.
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
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.
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.