Post Polio Victoria, as part of the The Assistive Technology for All Alliance is pleased to provide this submission to the 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
This submission is written on behalf of Post Polio Victoria Inc (PPV) which has over 200 members who have had polio. The aim of PPV is to ensure that people with a history of polio receive appropriate and informed health care and have full access to the services they need for greater inclusion and participation in work, home and community life.
PPV’s members are people who contracted polio both in the epidemics in Australia that ended soon after the introduction of the Salk vaccine in 1956 and also in countries such as India, Vietnam and the Middle East where the disease has been endemic until more recently. Therefore the age of our members range from people in their eighties to some in their forties.
Victoria responded to the epidemic by providing rehabilitation services staffed by Government funded doctors and physiotherapists. In 1998 that service was largely withdrawn. What remains now is a service that provides people with polio an assessment and referral to generalist services in the community, which patients must either fund themselves, or for the “lucky” ones, attend as NDIS recipients.
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.
We will provide three case studies to illustrate.
Ron contracted polio in 1952, at the age of fourteen, leaving him with paralyzed leg muscles mainly on one side. He wore a full leg caliper made of iron and with leather straps and buckles, the only available brace at the time. Following long and difficult hospitalisations he regained strength and learned to walk again. He lived an active life, working in community services, raising a family, volunteering in the community and managing his small rural property. He retired and receives the Aged Pension, still volunteering and living independently on his rural property.
In 2005, his old calipers well worn out, Ron was the first Australian to be fitted with a new brace called a “Stance Control”. Made of aluminum it was lighter , and had a mechanism that “sensed” the movement of the knee and the hip so that it locked at the point of the stance that prevented a fall, and enabled a natural gait. As the only funding available to people with disabilities such as Ron was $2200 through the State Wide Equipment Program (SWEP), which fell well short of the more than $10,000 it cost at the time, it was paid for by a donation from the Lion’s Club that Ron belonged to.
Ron did well with this, generously promoting the benefits of the brace to others on videos and in public talks, until recently when this brace required replacing and he needed one for his other leg as well due to muscle weakness caused by the effects of post polio. The cost of the Stance Control twelve years later was $15,000. Ron needed two, and so needed to pay $30,000.
Ron has been assessed as Level 2 under My Aged Care, receiving around $15,000 per year, less the $6700 for manadatory Case and funds management fees, equalling $8300 per year, provided in monthly deposits of $845.00. These funds have been allocated for home and garden maintenance, with no funding allocated for assistive technology, despite the essential role this plays in his life. It is not listed in the Level 2 guidelines as included.
Ron was unable to walk for almost a year as he had no way of funding the two new braces. He used a wheelchair and crutches. At this time Ron was the primary carer at home as his wife by now had back and hip conditions requiring surgery, and was herself in a wheelchair most of the time, and was relying on Ron.
The State Wide Equipment Program still only provided a little over $2200. His orthoticist contacted people for spare parts to help lower the cost. Eventually Ron received a personal donation from a church member which enabled him to get the two Stance Control braces he required.
At the age of six in 1955 Peter had polio, paralysing both legs permanently, contracting both hip flexors, forcing him into a forward leaning position, and preventing him from being able to stand and walk upright. To enable walking Peter has worn two full length calipers and used elbow crutches since then. This forward leaning position means half of his body weight is supported on his arms which makes for precarious balance and increased risk of falls, and has increased pressure on his shoulders. In more recent years he therefore also uses a wheelchair.
Peter says “When the Polio Unit (run by the Victorian Health Department) was disbanded in the 1990s the Kennett government promised that support would be continued through regional rehabilitation centres. However, those were geared to short-term rehabilitation programs of six weeks’ duration. Over time I attended three different rehabilitation centres weekly for stretching and assistance with
walking, and paid a fee each time. The centres each in turn kept me on for a while, but then discontinued treatment, until finally I was left with no regular assistance at all.”
He has made occasional visits to physiotherapists at his own expense, but even with private health cover, given the treatment required, the cost was prohibitive.
Peter leads an active and productive life, and like many people with polio, has had to deal with the added difficulties created by lack of support for his disability throughout his career. “Despite all this, I completed a double degree in Law and Arts at Melbourne University, followed by an MA at Monash University. I worked as a university tutor at Monash and later at Melbourne University. Subsequently I obtained a PHD at the University of Paris, living independently in student accommodation for 4 years. Upon returning to Melbourne in 1984 I joined the Victorian Bar and have worked as a barrister and legal translator. My disability has definitely impacted my career as I was often discriminated against by clerks who wouldn’t give me cases because of my crutches.”
Peter has been assessed as a Level 2 under the Aged Care system, pending approval of Level 3, for which there will be a considerable wait. The level 2 package is capped at $15,000 out of which provider charges are $5000. Peter is a self funded retiree and means testing means that his co-payment is assessed at $10,000. He therefore receives no financial assistance at all!
Asked what assistance he needs Peter says “My three main needs are assistance with aids and equipment and repairs. My wheelchair is 20 years old and my calipers are 48 years old. I also need on-going Physiotherapy for maintenance of movements and stretching contracted muscles. And I need transport to medical appointments and other destinations. Without those resources, I am at risk of injury at any time, essentially taking away my capacity to function independently at all.”
If Peter was on the NDIS he would receive all that he needs and he would be encouraged and enabled to continue his active life as safely and comfortably as possible for as long as he possibly can.
Liz contracted polio in 1956, just missing out on the vaccine. Like Ron , she was mainly affected on one side and required a long leg caliper which she wore until she was seventeen, receiving treatment from the physiotherapists through the Polio Unit. Then she “graduated” into a short leg brace as she had gained enough strength over her growing up years. Then no further treatment (or funding for assistive devices) was provided. She studied, worked as a Social Worker, pursued further training , raised a family and built a practice as a psychotherapist. Like Ron and Peter, she lead an active life. The impacts of post polio became stronger in her late forties and by the time she was in her fifties she required a long leg brace for many activities, a scooter for long distances and was using crutches consistently. She developed significant degeneration from her uneven walking pattern over the years
and painful muscles and tendons. Pain increased as her working muscles struggled to compensate for the polio affected ones that were wearing out. Her use of private physiotherapy and other pain management programs was increasing. Due to pain, fatigue and weakness, she was forced to reduce her work much earlier than she wanted and then to retire a number of years before planned.
Liz is now sixty-three and requires a scooter for distances, upgrading of her brace to a long leg light weight carbon fibre model costing about $8000, domestic support in the home and garden (approximately $15,000 per year), on going rehabilitation in the form of a weekly physiotherapist lead exercise and hydrotherapy sessions (approximately $7000 per year). As an NDIS participant, all of this is covered. In addition, $30 a week is paid for transport costs. Liz also wants to trial an alternative to her scooter and hire will be paid for, with the intention that if successful, the new device will be funded next Plan.
The NDIS is not means tested, there are no administration fees as Liz is self managed and the requirements were decided at the annual review based on Liz’s individual requirements. She will remain on the NDIS as long as she chooses.
Ron, Peter and Liz all have a similar disability caused through contracting polio within a few years of each other. They are active people who wish to remain so. Assistive technology is essential for their independence. Therapies are needed for on-going movement, strength, and pain management. They may need increasing levels of support in and around the home, and to access the community. Only Liz will receive the funding to meet these needs, simply because she is a few years younger than Peter and Ron.
These are just three examples. There are thousands of people who have a history of polio in Australia. Many have survived the epidemic and are now in their sixties and above. They have a disability. This needs attending to first. The Aged Care System does not meet the needs of people with a disability as the NDIS does.
This is not a rational and fair approach to providing disability services.
- Review the exemption to the NDIS for people with disability aged over 65
- As a minimum, remove means testing and capping of aged care funding for older Australians living with disability, or develop an NDIS-funded safety net to cover the gaps in funding for this cohort
- Invest in training in disability and progressive neurological conditions for those involved in assessment and provision of aged care services
- Significantly increase the number of home care packages available – we recommend an additional 30,000 additional packages within the next 12 months
- Ensure there are consistent, transparent avenues for funding assistive technology that do not leave older Australians with disability out of pocket for vital aids and equipment
- Ensure that no older Australians living with disability need to choose between assistive technology and services due to limited funding support
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.
Our last meeting was on 5 June. Currently PSV is reviewing its physical layout in the Bolte wing at St Vincent’s to create a more client friendly, efficient and pleasant environment for those people who are using their services. The changes being made so far are to seating and signage. More substantial changes involving the reception area and access doors will depend on future capital budgets. If you have any feedback about the physical layout and/or PSV services, they would be very pleased to hear from you.
We are also working towards all Victorian hospitals having a polio alert as part of their admission procedures. This is very important for people with polio, particularly with regard to anaesthesia. Anaesthetists need to know when patients have had polio. St.Vincent’s has a Polio Alert that is activated when an in patient informs the hospital that they have had polio. We know that some hospitals have a type of polio alert as an automatic part of their admission procedures (i.e with a question about polio history on the in-take form) and we are looking to identify these and use them as a basis for approaching other hospitals.
Polio Australia is trying to get a polio alert included in the My Health Records system. Remember that if you are admitted to hospital for any reason, always tell them you have had polio. PSV has recieved further funding to review long standing open client’s cases. Please contact them directly on Tel: (0 3) 92 31 3900 or 1800 030 324
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.
- 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 firstname.lastname@example.org if you are interested in the role.
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.
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
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:
Please get back to us by the end of March.
Looking forward to hearing from you,
Post Polio Victoria Inc.
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.
You can download a copy here, or contact us if you’d like us to post you some printed copies.
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.
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
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.
PPV members Dr Margaret Cooper and Frances Henke have been nominated for the Australian Human Rights Commissioner’s Best Achievement in Human Rights.
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.
PPV made this response the the NDIS discussion paper on Assistive Technologies
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.
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
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.
PPV President and Our Issues in the October issue of “The Senior”
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.