Post Polio Victoria (PPV) opposes the mooted introduction of “independent assessments” for access to the NDIS.

A change from the current assessment model to the mooted “independent assessment funded outsourced model” is unnecessary and potentially deleterious, in that it threatens current and potential participants with reduced assistance or even exclusion from access altogether. There is strong potential to re-traumatise polio sufferers, who need trusted health care providers who are essential to safe continuity of care.

It is undesirable to divert funding from resources for polio sufferers to an additional layer of bureaucracy, regressing from a human rights best practice model to a Dickensian welfare model.

The health and well-being of polio and wider disability communities must not be compromised by interference with the NDIS for reasons of cost-cutting or on any grounds whatsoever.”

Post Polio Victoria Inc.

T: 0431 702 137

www.postpoliovictoria.org.au

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Section 22 of the National Disability Insurance Scheme Act 2013 (“the NDIS Act”) excludes disabled persons over 65 from coverage under the National Disability Insurance Scheme (“NDIS”). They cannot even apply for NDIS coverage.

Many poliomyelitis survivors’ disability dates from childhood, during the Polio Epidemic of the 1950s. It was labelled “Infantile Paralysis”, being a disability specific to a very young age, totally unrelated to the age of 65.

For those historical reasons many polio survivors were over 65 when the NDIS was introduced, but their disability pre-dates by several decades the introduction of the NDIS.

Accordingly, it is inappropriate and illogical to ban such polio survivors from the NDIS, given that their disability is not related to older age, and in particular has nothing to do with the age of 65.

PPV submits that the exclusion of those polio survivors from the NDIS is abusive, unlawfully discriminatory, and violates the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The exclusion denies the victims of the discrimination (“the victims”) full and equal access to disability insurance coverage that they would otherwise share with all other Australian citizens.

That discrimination is flagrant, explicit, and systemic, and constitutes potentially life-threatening ongoing neglect of an entire category of disabled persons.

It is exploitative in that the victims have large sums of money extracted from them for necessary equipment and treatment which would otherwise be provided without cost if the victims were not excluded from coverage under the NDIS.

Victims who cannot afford to pay for such necessary equipment and treatment suffer abuse and neglect in that they are deprived of the same to the risk of health, safety and life itself.

In particular, it is abhorrent that the victims are subjected to a “welfare” model of assistance for disabilities, which involves attempting to “retrofit” ad hoc Aged Care Packages not primarily designed for addressing disability, whereas all other age groups among disabled persons have the benefit of an “insurance” model of assistance under the NDIS.

NDIS assistance is tailored to the requirements for a given disability, whereas the welfare model is not tailored for disability and involves an arbitrary fixed amount with no heed to actual individual requirements.

Inevitably, therefore, requirements are not met and the result is neglect.

The ban imposed on polio survivors undeniably constitutes an abuse of their human rights.

In an additional infringement, the Age Discrimination Act 2004 was amended by insertion of an exemption in Section 41 (1) (fba), intentionally to forestall complaints against the exclusion from the NDIS, which is a further violation of victims’ rights.

PPV submits that the ban is unlawful in that it violates the letter and the spirit of the CRPD, as instanced in the Articles below.

Article 1 states :

The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by ALL persons with disabilities, and to promote respect for their inherent dignity.”

Manifestly, the purpose of the Convention is breached by exclusion of an arbitrary category of disabled persons from coverage under a national insurance scheme specific to disabled persons.

Article 3(b) specifies non-discrimination as one of the Principles of the CRPD. The exclusion complained of is intrinsically discriminatory and a violation of the Article.

Article 5 (“Equality and non-discrimination”) provides:

1. States Parties recognize that all persons are EQUAL before and under the law and are entitled without any discrimination to the EQUAL protection and EQUAL benefit of the law.

2. States Parties shall prohibit all discrimination on the basis of disability and guarantee to persons with disabilities EQUAL and effective legal protection against discrimination on ALL grounds.

In breach of Article 5(1), polio survivors deliberately excluded by legislation are self-evidently not treated as equal before and under the law.

In breach of Article 5(2), polio survivors excluded from an otherwise nationally available benefit by legislation are not guaranteed equal and effective legal protection against discrimination on all grounds.

In fact, the breach of human rights is formally and explicitly admitted in the Conclusion of the Explanatory Memorandum to the NDIS Bill 2012:

“To the extent that it limits human rights in some circumstances, those limitations are reasonable, necessary and proportionate to ensure the long term integrity and sustainability of the National Disability Insurance Scheme.”

Hence the statement expressly concedes that the exclusion “limits human rights”, with an alleged justification. The justification is invalid, as pointed out extensively and repeatedly in the Parliamentary Joint Committee on Human Rights (2013) when it analysed the NDIS Bill.

Further, the amendment of the Age Discrimination Act 2004 by the insertion of Section 41(1)(fba) explicitly to prevent claims arising from the NDIS exclusion is inherently an admission of discrimination, being effectively a “pardon in advance”

PPV notes that in the Explanatory Memorandum no supporting particulars are given of how exclusion of persons with a disability over the age of 65 ensures “the long term integrity and sustainability of the NDIS”.

The Attorney-General’s Department has issued Guidelines on Permissible Limitations to Human Rights (“the Guidelines”) stating inter alia that:

“The limitation must be aimed at achieving a legitimate objective and also be reasonable, necessary and proportionate. This means the limitation:

• must be necessary to achieve a legitimate objective
• adopt a means that is rationally connected to that objective
• Those means must be no more restrictive than required to achieve the purpose of the limitation. “

In fact, no evidence has ever been produced that the exclusion limitation is necessary to ensure the long term integrity and sustainability of the NDIS.

No evidence has been produced that the exclusion is rationally connected to the objective of ensuring the long term integrity and sustainability of the NDIS.

Further in the Guidelines a number of questions are set out for assessing whether a measure limiting a right is reasonable, necessary and proportionate, inter alia:

(1) Does a less restrictive alternative exist, and has it been tried?

A number of less restrictive alternatives to the exclusion exist, including coverage for, inter alia:

(i) Disabilities arising from poliomyelitis suffered in the 1950s polio epidemic;

(ii) Disabilities dating from childhood;

(iii) Disabilities arising in young adulthood prior to the introduction of the NDIS;

(iv) Disabilities arising prior to the introduction of the NDIS.

(v) Disabilities not related to the ageing process.

In fact, none of the foregoing have been tried.

(2) Is it a blanket limitation or is there sufficient flexibility to treat different cases differently?

The over 65 exclusion is a blanket limitation, with no exceptions, no allowance for particular circumstances, and no provision for appeal.

(3) Has sufficient regard been paid to the rights and interests of those affected?

No regard whatsoever has been paid or is contemplated to be paid to the rights and interests of those affected.

(4) Does the limitation destroy the very essence of the right at issue?

Self-evidently in the premises the limitation destroys the very essence of the rights at issue, namely the right to EQUAL protection and EQUAL benefit of the law without discrimination.

Conclusion

It is undeniable that the exclusion of polio survivors from the NDIS is harshly discriminatory.

The exclusion is moreover unlawful in that it flagrantly violates the provisions of the United Nations Convention on the Rights of Persons with Disabilities.

It is not reasonable, necessary or proportionate, and hence the violation is not justifiable.

Further, the exclusion is unconscionable and abusive in that it imposes severe unnecessary hardship upon polio survivors through no fault of their own. It is especially mean-spirited given that the polio survivors affected are a numerically limited closed set of persons, a dwindling cohort in fact. For government to “wait

them out”, banking on mortality over time to rid it of people it apparently condemns as a burden is clearly unacceptable conduct.

Accordingly, Post Polio Victoria calls for :

A. Polio survivors to be eligible for NDIS coverage without any age limits.

B. Amendment of the NDIS Act to remove the age requirement for NDIS coverage

C. Repeal of Section 41(1)(fba) of the Age Discrimination Act.

Drafted by Dr P Freckleton

On behalf of,

Post Polio Victoria Inc.
Shirley Glance OAM
President
Post Polio Victoria Inc.

View the original PDF of this submission

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In a survey of 2,069 people with disability carried out on behalf of the Department of Social Services: 32% said that safe and accessible housing and accommodation was ‘a severe issue’; 27% said it was ‘a major issue’; and 16% ‘somewhat an issue’ (The Social Deck, Dec 2019:33) i.e. safety/accessibility was important to 75% of those surveyed.

Post-Polio Victoria Inc supports minimum accessibility standards being regulated in the National Construction Codefor all new residential dwellings in Australia.

Read our full Response to the Regulation Impact Statement Consultation

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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.

The Responses

40 people completed the survey between the 3rd of May and the 19th of May 2020.

Most of our respondents had contracted polio before 1960, with just three younger people who had contracted polio after 1960. Some other supporters and community members also filled in the survey. We believe these numbers reflect our general membership demographic, a good reminder to invite and welcome more younger people and migrants to join PPV too!

Challenges of the coronavirus pandemic

For most of us, the lockdown made it a lot harder to keep in touch with family and friends – but others are used to staying home, or have learned to use technology to keep in touch.

A great concern for many people with polio is regular exercise, and just over half of respondents were having difficulty with that, with access to hydrotherapy, pools, gyms and other sports facilities interrupted.

Getting medical treatment has also become significantly more difficult. Of great concern are 3 respondents who are having increased difficulties paying the bills and keeping a roof over their head.

Getting help

Thankfully, family, friends, carers, neighbours have all come to our assistance. Other responses were food deliveries, nurse on call, and ‘husband’ also came in handy a couple of times. One person called on a charity to help, and one person who may have needed help didn’t receive any. Its a good reminder to reach out to people in our communities who may need it.

The “COVID Safe” App

As the Covid-Safe App was rolling out, we wanted to know if people were using it, and what they thought. While the 55% of people who had installed it on their phone already was very significantly higher than the population of Australia as a whole, contention around the apps security and privacy was still a major issue – even for many of those who did download the app.

“I am still a little concerned about security and having Big Brother keeping tabs on my whereabouts but I also see the necessity.”

“I don’t like any of the government assurances re health issues and data storage.”

“Hopefully it will give everyone a chance to see family and friends.”

Echoes of Polio

People were asked “Do you think that your experience of polio has made it harder or easier for you to adapt during this pandemic?” – and the responses were decidedly split. Some people had a chance to let the world catch up to their slower pace of life. Others felt used to it and had survived worse, but for many there were added challenges, especially the difficult memories of childhood polio.

“Much harder as bringing back buried memories of my 6 yrs in hospital and the devasting personal and financial effect on my family” Rosemary

“Brought back very difficult memories.”

“Much easier, I was in isolation when I got polio, had schooling via mail etc I was kept away from other people but coped with it then” – Lyn

“Much easier. Less appointments to go to when over-tired. Can take things slowly which suits pained body and lack of sleep due to pain. Have spent all my lifetime finding alternative ways of entertaining myself, pacing and being patient with a tired pained body, so much easier now with less external demands. Can go at my own pace.”  Jan

People were also asked Does this pandemic bring back memories of the time that you or others around you had polio? A much clearer majority said it did, other than for those who had polio as a baby, or not at all.

“Yes many awful memories. Isolation the noise of ventilators and being deemed dirty and contagious” – Robyn

“The memories are seldom from my mind what very few I have but it has increased the fear of catching the virus.” – Allen

Our stories

The survey was a good opportunity to share stories and have a discussion with members from across the state, and one as far away as the Kimberleys in Western Australia. We’ll leave you with some heartwarming stories shared in the survey. If you’d like to continue the discussion, feel free to chat in the comment box below the post.

“I’m inspired by community kindness and support for health workers; inspired by capacity to adapt and be innovative at work; seen people work phenomenally hard to make things happen; seen sick leave reduce because our front line workers want to help the patients and be there; seen health services become flexible and make Telehealth happen and give validity to the well being of our employees; see the state work collaboratively with the sector to keep everyone safe. It has been a privilege to be involved in public health during a once in a lifetime pandemic. Great to understand the perspectives of our post polio community living through a second pandemic.” – Anne

“The numbers on my letter box were stolen. I didn’t realise this. The postman came to my door to tell me. When I said thanks and laughed and said he knows where I live. He was concerned and told me it isn’t the mail what if an ambulance or fire truck couldn’t find me. A reality shock and a grateful customer was me. I rang the PO the report his good deed. I think it all got lost in all the chaos so now at least you know there are some good guys around.” – Robyn

“Friends have been very kind. One family gave us two pumpkins, too hard for us to cut so we passed them on to neighbours, who made spicy pumpkin soup for both families.” Fran

The post Post Polio and Corona Virus Survey Results appeared first on Post Polio Victoria.

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.

Please read and sign the petition here

The post Tell them we matter. Support access to care and rights for disabled people during COVID-19 appeared first on Post Polio Victoria.

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.

Take the survey here

The post Post Polio and coronavirus survey appeared first on Post Polio Victoria.

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. 

It is self-evident that the medical treatment of polio survivors must not be compromised by reason of age and/or disability or on any grounds whatsoever.”

As a polio survivor myself I am fully aware of how debilitating a virus can be, and would hate to think if I were to be wheeled into Emergency, I would be rejected or discarded by reason of my disability and or age and denied full treatment.

We would welcome your assurance that the above treatment principles will be acknowledged in order that polio survivors will receive full treatment and not be subject to adverse discrimination, including involuntary or enforced euthanasia.

Shirley Glance OAM
President
Post Polio Victoria Inc.

Letter to Prime Minister 3rd April 2020

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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.

Read the submission here

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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

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