Consultation period

29 April 2019 - 12:01 am To 26 July 2019 - 11:59 pm

Discuss human rights and being equal

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The human rights and being equal discussion document  is available at the links below:

The discussion topic included:

  • Self-determination, and choice and control
  • Rights protection, safety and justice
  • Legislation
  • Public awareness
  • Advocacy.

This discussion has been made by members of the public. The views and recommendations expressed in this discussion are those of the authors and are not the views or recommendations of the Australian Government. The Australian Government accepts no responsibility for the accuracy or completeness of any material contained in these submissions. Please note discussion may have been edited to remove certain words or names of individuals or organisations.

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36 comments on Discuss human rights and being equal

  1. Moderator - The Social Deck Moderator

    Welcome and thanks to everyone who has shared their experiences, insights and comments so far in this online forum about the next National Disability Strategy for 2020 and beyond.

    Today (Friday 21 June) is the final day of the forum. It will be closed to comments at 5pm AEST.

    Please refresh your page regularly to see new comments.

    1. PF

      Moderator, are previous days’ posts available for reading ?

      1. Moderator - The Social Deck Moderator

        Hi PF. You can view all posts, comments and replies on each page, including all previous days of the forum – they appear chronologically, oldest to newest. Make sure you refresh your page regularly to ensure all of the comments display.

    2. PF

      Where do you click to see previous days ? I can’t find a tab for that.

      1. Moderator - The Social Deck Moderator

        Hi PF. All comments from previous days are on this page. If you scroll down, you should be able to see each post and the date it was published, starting from 17 June. Please let us know if you have any other difficulties.

  2. Moderator - The Social Deck Moderator

    This discussion topic is about self-determination, choice and control
    What stops people with disability from having the same freedom and control as everyone else? Think about:

    Do you have enough choice in your life? Choices might mean living where you want, choosing your own service provider, or something else.
    What needs to change so you can have more choice and control?

    1. Tumblefly

      One thing that keeps coming up with the whole thing of “Choice and control” is the idea that “now” providers do not have so much control over pwd. I have had two providers suggest to me that if I do not like the way they do things, that I have the choice to go elsewhere.

      The thing about this, is it is not as simple as that. I had good support workers who worked with them, and I have a high degree of barriers to engaging with new providers. In my view, providers should never be the one to exercise the choice and they cannot just abdicate the level of control they have over us. By controlling access to our support workers, they control our lives, and although it is possible (with an intense amount of effort) to exercise one’s own control or at least check their control, the fact remains that much of the time, some of us /rely/ upon providers simply doing their job and providing us with the supports we need and depend upon.

      The culture needs to change, where a PWD exercising their control is not seen as a complaint, and is not taken as a “bad feel” that takes away the “good feels” that many are drawn to when they imagine why they are keen to support pwd. We are not here to make people feel like better humans. We deserve to be seen as equals, who may or may not benefit from the particular service that a particular agent within an organisation is providing us. When this happens, yes, we are “free” to move on, but for many of us, it would be much better if it were understood by the sector that the agent should be seeking support from others within the providership to address the pwd’s unmet disability support needs. Not to in any way resist the pwd, but to find the opportunity to learn more about particular support needs.

      1. Moderator - The Social Deck Moderator

        Hi Tumblefly. Thanks for your contribution to this question. Do you think there are things that could be done to encourage a better understanding in the sector about how a person with disability can be supported to exercise their control, and to support this change in culture?

      2. Tumblefly

        Well, I have made a service agreement to append to the one provided by my new service provider. I’ve been doing my best to “educate the willing”. I’m here, trying to educate the best I can. I attend workshops and challenge notions of “it’s so complicated” with – it really isn’t. I don’t know how to do any bette than this. Do you have a more specific question because I do not have a role beyond one that was thrust upon me as my autonomy and agency has been unnecessarily checked by the well meaning.

    2. PF

      Income is a major barrier to choice of activities and participation . Eg, It seems strange that the Disability Support Pension is actually below the national poverty line.

      The OECD measure for poverty is an income less than half the national median income. Not myself eligible for the pension, but speaking for those that are, It is self-evident that income support should be at least above the OECD criterion.

  3. Lewis

    I work for Huntington’s NSW & ACT. So many of our carers tell us that NDIS assessors just don’t get Huntington’s disease or other neuro-degenerative conditions. People with Huntington’s are often lacking insight into their condition, however assessors regularly accept their assertion that they have no need of services, when their carers are crying out for support and an objective assessment would indicate NDIS eligibility. Relying on the views of the person in these situations is not the right approach.

    1. PF

      Yes, I agree. Polio survivors are similar, in non NDIS situations. They are v poor advocates for their own plight.
      For people who have coped with a disability and are proud of their achievement, It comes naturally to be stoic, and of course commendable that people put the best face on things. But at times it leads to the misunderstandings you point out.

      Assessors need to be alerted to that basic aspect of human nature and think past it. A check-list approach, covering a range of things relevant to the disability in question might help elicit more information. Carers, of course, should also be consulted. It is easier to advocate for others than for oneself.

  4. Moderator - The Social Deck Moderator

    This discussion topic is about rights protection
    How can we better make sure the rights of people with disability are protected and understood? Think about:

    Do you know what your rights are?
    Do you find it easy to find information about your rights? Do you know much about the Disability Discrimination Act?
    Do you know where to get help when your rights haven’t been upheld?

    1. PF

      It is little known that Disability discrimination complaints to AHRC are by far the most numerous, to the extraordinary extent that they alone equal the combined total of Sex discrimination and Race discrimination complaints – 38%.as against 21% + 17% respectively.

      Yet AHRC is never proactive in taking own motion actions or publicly calling out disability discrimination.
      . .
      One answer is to ensure that people with a disability are allowed to work for AHRC itself, rather than excluded as in the past. In fact, at least in the Disability division, having a disability should be regarded as a qualification in itself.

  5. insitu

    Even though the Special Disability Trust Act recognizes all forms of disability, the screening instruments used by Centrelink’s disability trust section discriminate against people on DSP with psychiatric disabilities by making their eligibility contingent on the kinds of daily supports appropriate to other forms of disability (such as showering, feeding, daily activity assistance). Like thousands of other ageing parents trying to make watertight provision for a family member who requires intensive psychiatric support, we discovered that in the absence of public housing, rental assistance that has not kept pace with the market and fierce competition for over-inflated and unobtainable rental properties, the only way to put a secure, safe roof over our son’s head was to use our superannuation to buy a unit. His rent pays rates, owner’s corporation fees, other overheads and little else. We cannot simply leave the unit in a will to our son: we need to tie it up in a trust (he is under the State Trustees). Far from encouraging families to help meet this housing hiatus, however, Centrelink’s trust regulations don’t recognize the distributed forms of care we have helped put in place, or my son’s eligibility as a Trust recipient. What from my viewpoint would help thousands of mentally ill people like my son from being left to flounder and become homeless? 1. Recognition by the DSS of the fundamentally critical right to safe, secure housing – above all else. 2. Updating the Special Disability Trust Act to make the operation of a Trust available to all recipients who stand in need of one. 3. Ensuring that staff in that Centrelink section have the competencies and training to carry out the program in accordance with the intention behind the Act and without discrimination.

  6. Moderator - The Social Deck Moderator

    This discussion topic is about advocacy
    Can you stand up for your rights? Think about:

    Is there enough support to help people with disability advocate for what they need and stand up for their rights?
    What is important to you about advocacy organisations who can help to influence policy and system and make positive change for people with disability?

    1. Rae

      There needs to be more public awareness about both chemical sensitivities, and the complexities of ME/CFS. This includes among disability advocates. I have been assisted minimally by a disability advocate on one occasion, in corresponding with the local council. Since then however, there have been two instances where my rights were being ignored and I was unable to advocate for myself. Both times, I was put though the assessment process – consuming a lot of energy that I cannot afford – only to be the told that they cannot assist me. Their response made it seem like it wasn’t a staffing or eligibility issue, but more that my disability was seen as ‘too complicated.’
      So, either more education is needed, or more staff to assist people in advocating for themselves – in all areas and across all disabilities.
      My life is spent in the exhausting role of self-advocacy and I don’t approach such an organisation unless I have not been able to get anywhere on my own. The reality is that sometimes, people with disabilities need such an organisation to work with them, not only because we have been unsuccessful in being heard, but because many businesses will only take notice of a professional advocate.

    2. PF

      Crucial topic. There is not enough support. Legal Aid is limited, and advice is hard to come by.

      Contacting advocacy organisations elicits the response that they do not cover the issue one raises, and advice to contact another organization, that gives the same response.

      In Melbourne, in particular, it has proved impossible to get help. One problem is that the organisations are not staffed with any people with a disability, so that there is frustrating incomprehension from the outset.

      Facilitation of an advocacy organization run BY people with a disability would be a great step forward.

      In my experience, AHRC is negative towards disability complaints, quick to dismiss them ab initio. For example, when complaining that a university employed no staff with a disability, I was told that I had to prove that there was a “pool” of disabled people qualified for a job before I could proceed. Of course, that requirement is itself discriminatory, in casting doubt on whether disabled people as a class could have the requisite qualifications. Once dismissed summarily, the complainant has either to drop the matter or go to the Federal Court, which is prohibitively expensive.

  7. waynee

    >> Legislation <<

    “The Disability (Access to Premises – buildings) Standards 2010.” is exclusively dedicated to physical access to buildings. I'd love to see this widened to include peoples unique sensory needs too. I have already posted in the "Discuss inclusion in all community life" on how open plan offices are creating a sensory nightmare for many people with Autism who are hyper-reactive to noise and movement (or even those wonderful office smells, definitely a big thank you to people who eat Tuna or a fragrant reheated microwave dish at their desk).

    So… I think the concept of Universal Design needs to be widened to include people with sensory needs (such as Autism) so that they can have equal access to buildings to earn a living. This really isn't an issue just faced by members of the Autistic community, people with a sensory processing disorder or mental health condition (such as anxiety or PTSD) will find it increasingly difficult to remain calm and productive as offices are open planned and become high-density fitouts (return to work guides for all mental health conditions suggest a quiet workplace too). Social anxiety is really quite heightened when you can reach out and touch your fellow employees' desks and see and hear everything as there are no or very low partitions (often with standing desks towering over you).

    In the public sector, I would increase the office space allocation in the Department of Finance Office Occupancy Report targets back to 16m2 as it was in 2010 (it was reduced from 16m2 to 14m2) (see https://www.finance.gov.au/property/property/occupancy-report/australian-government-office-occupancy-report/ ). I'd also allow personal storage around your desk and don't include this in the usable office space calculation (in the same way locker area or utitlity rooms are designated a "Non-office Area" and not included in "Usable Office Area") otherwise all desks will be clumped together and all personal effects moved to locker areas or utility rooms (really not useful for disabled employees or people who just need a little personal space to feel safe and included in their workplace).

  8. Stephen Williamson

    In a national survey conducted by Deafness Forum Australia in 2017, 500 participants were asked: Are there any barriers that stop you (or your family member) participating in or contributing to the community? What are they? (please select as many as you like)
    + Poor attitudes of people in the community: 52%
    + Lack of assistance with communication: 45%
    + Lack of income: 24%
    + Lack of disability related equipment: 23%
    + Lack of employment opportunities: 23%

    1. Moderator - The Social Deck Moderator

      Thanks for sharing this data Stephen. The attitudes of people in the community are coming up a lot in these consultations. Do you have ideas or further insights into what people think could be done better in the next national disability strategy to help improve attitudes of people?

      1. PF

        Radical idea : scrap the Americanism “disability” and revert to the term “handicap”. It’s a sure bet that a handicapped horse will win the Melbourne Cup. In fact, the highest rated horse, the Top Weigh, is the most handicapped of all. On the other hand, it is equally certain that the Cup will NOT be won by a disabled horse.

        So people can realise that the impairment is only one aspect of an individual..

        Most people only see disabled people in positions of weakness or difficulty, never in a position of strength or authority. In short, disabled people are defined in the public eye solely on the basis of what they cannot do. Their individuality and personality do not come through.

        The situation seems to be slowly improving – we now have a disabled Senator – but could be moved forward by promoting employment access and appearance on TV panels shows, for example.
        Shows like Hard Quiz on the ABC demand that contestants walk to and fro, mount steps, etc and are obviously not designed to include the physically handicapped contestant

      2. Paul

        For PF: If possible, could you please listen to this discussion “How attitudes disable: Rethinking our assumptions about people with impairments” – https://upclose.unimelb.edu.au/episode/399-how-attitudes-disable-rethinking-our-assumptions-about-people-impairments

        In it, Professor Eric Emerson says that we should use disabled people because we are disabled by our needs not being accommodated.

        It helped my thinking a lot and from time to time I now say to people “Why are you disabling me” in response to things that they are proposing or doing.

  9. PF

    A fundamental problem facing many of us is the unfair exclusion of over 65s from NDIS. This was known beforehand by government to be a prima facie offence under the Age Discrimination Act, so they amended the Act to make such discrimination lawful – see section 41 (1)(fba).

    That was a technical; legal fix, but of course leaves the human right breach outstanding, For governments simply to pass laws excusing themselves from offences is obviously itself an even more pernicious breach of human rights than the original offence, because it robs victims of their statutory recourse.

    It is particularly unfair on people who were paralysed by poliomyelitis as children – the condition was even called “Infantile Paralysis”, and yet we are punished for being too old!

    Aged care packages are not appropriate, not being geared to disability and its needs and challenges, including specialized equipment like leg braces, customized crutches and footwear, etc.

    The exclusion was made on purely financial considerations, as the official Digest for the NDIS Bill shows. I hope all would agree that penny-pinching should not override the fundamental right to access. .

    This injustice is easily fixed, by deleting the age limitation clause from the NDIS Act.

    1. Stravers

      I agree to only part of this, I don’t agree to getting rid of the age limit however I do agree with enabling People with a lifelong permanent Disability being able to access the NDIS for life for equipment and that it needs to sit seperately to an aged care package. The aged care package would therefore at aged 65 take over the support needs of the person (support workers and consumables) however the NDIS would fund the person lifelong for the equipment they need. A level 4 Aged Care package is not enough for a person with a Disability to purchase equipment (Level 4 being around $50,000 per year, when some electric wheelchairs a Person may need is $40,000 alone leaving only $10,000 for that person for the year for support services). This would solve the problem PF has raised and provide equity, continuity and certainty for those with a lifelong impairment that their needs will continue to be met.

      1. PF

        Your idea of access by people with a lifelong permanent Disability would be a good start.
        As a first step, a “grandfathering” proviso would be simple and fair.

        Administratively , I think it would be more efficient to simply extend NDIS coverage to longstanding disability altogether.

        In the end, the age exclusion cannot stand – it is avowedly ageist, as the government admits by its haste to amend the Age Discrimination Act to outlaw complaints. Eventually logic and morality will prevail.

        But I’d certainly welcome what you suggest in the meantime.

  10. PF

    Public transport is a vexing issue, which significantly affects freedom of movement and choice of destination. Not everyone drives, and in any event parking is so poor as to put CBD venues out of reach, Taxis are ruinously expensive.

    Awareness is much improved, but policy still suffers from lack of input from actual users.

    Eg in Melbourne, while some central train platforms have raised areas at each end to allow wheelchair access, they often stop just short of the nearest carriage door. Placing an extra raised area in the middle is an obvious, simple solution that has never been considered.

    Suburban stations do not have raised areas or ramps at all.

    New trains are commissioned without regard to platform height compatibility, which would be relatively easy to achieve if specified at the outset.

    It would be magnificent if we could have a policy mechanism enabling transport users to get practical matters on the agenda.- with vigorous follow-up!

    1. Moderator - The Social Deck Moderator

      Hi PF, thanks for joining the discussion and sharing your ideas.

  11. Moderator - The Social Deck Moderator

    This discussion topic is about laws to respect rights, including making sure people with disability have the same opportunities as everyone else in the community
    Are there laws that need to change or strengthened to make sure people with disability are treated fairly and equally? Think about:

    Why do these laws need to change?

    1. PF

      The NDIS Act needs to be amended to delete the age exclusion.

      Section 41(1)(fba) of the Age Discrimination Act must be deleted, because It takes away disabled persons’ right to make a complaint if excluded from the NDIS.

    2. Stravers

      As mentioned in various reports by Law Reform Commissions in Queensland, Victoria and NSW, Guardianship Law needs to be changed to reflect a supported decision making position. This law has just changed in Victoria to reflect International developments and to recognise the rights of the person to make their own decisions. Guardianship law must be changed to be in line with International standards. A person should always if they have the capacity to do so, be able to make their own decisions, hold their money, choose where they live and make decisions about their medical treatment and life decisions. Giving a person sole power over another person, if the person can verbalise their own wishes, is agaisnt International Human Rights. It should also be noted that for some people capacity may fluctuate (mental health conditions for example) and a person should not lose their autonomy, indepedendence, dignity and money if the majority of the time they do in fact have the capacity to make decisions. Those who have addiction issues or lifestyle choices should not lose their rights at all and this needs to be stipulated in the legisaltion. To take away someones rights because they choose to live a certain way or because they suffer from substance abuse is against International Human Rights law. Currently the law allows for a substitute decision maker to be put in place of the person, often resulting in severe trauma, distress, loss of independence, financial exploitation, sale of assets, loss of assets and other negative consequences. Those put under the state have a stranger making decisions about their welfare without consultation or regard for the persons wishes. This entire system needs to be altered. It has already been reviewed multiple times, inquiries held and reform recommendations provided and yet they have not been implemented. The law must change or Australia is in breach of the CRPD. I also believe EVERY person who is taken to Guardianship Tribunal or any other tribunal seeking to strip them of their rights needs to be given pro bono legal aid/representation. The life consequences of losing your rights in these tribunals and pseudo-courts are just as life impacting as those criminal proceedings that result in some kind of incarceration if not moreso as in some instances you lose all autonomy including the right to consent to medical treatment. A person must be represented if the state is seeking to strip them of their rights just as in a court of law for criminal proceedings.

  12. Stravers

    There are major problems with Discrimination legislation and policy/procedure in this country. The first is that the Discrimination process is not accessible itself. It is legalistic, complicated, time consuming and daunting for the majority of people. Discrimination complaints can often take years to resolve and result in court cases. Conciliation prior to that is a good idea, however in Victoria for example, the conciliation process to a discrimination complaint is actually voluntary. There is no obligation for a business to participate in conciliation. If a business refuses or you don’t agree with the outcome of conciliation, the only option is to take legal action. If a person with a Disability is not entitled to legal aid, this is a costly process. If the case fails, the person is liable for costs. Many people with a Disability just do not report discrimination and/or give up at the prospect of having to go for court and undergo a very overwhelming process for very little return. The prospect of having to pay costs will put off a person from pursuing action entirely. Another Barrier here is also our anti-discrimination legislation has loopholes such as unjustifiable hardship. Many businesses have used this as a reason to indirectly discriminate against person, likely knowing that they’ll just deal with a complaint later if accused of discrimination and also knowing this is a lengthy legal process that could take years in which time they’ll change their behaviour if forced to do so when a complaint arises. Unlike the ADA Act in America which make it an obligation to comply with Anti-Discrimination legislation with no excuse for non-compliance, our act provides an in-built loophole for people to get around. This loophole needs to be removed, conciliation needs to be compulsory and the Act needs to provide for People with a Disability to take a case to court without risk of being liable for costs.

    1. Moderator - The Social Deck Moderator

      Thanks Stravers for joining the discussion and sharing your insights and experiences.

    2. PF

      Good points

    3. Paul

      Stravers comments about enforcing disability discrimination legislation matches my experience.

      I complained to the AHRC about an issue. The AHRC took it to the organisation who just said “it’s too hard”. I made a suggestion about how it could be resolved which the AHRC took back to the organisation and the organisation just doubled down on its “it’s too hard” response. The only option then is legal action, with no guaranteed chance of success, and a high chance of high costs. It’s just not worth it, so I dropped it.

  13. Moderator - The Social Deck Moderator

    A reminder that this forum ends at 5.00pm today (Friday, 21 July 2019).

    We would like to thank all participants for their time and contributions, and for sharing your story and experiences.

    The information and insights provided by participants in this forum will be reviewed, considered and included in our Consultation Report, alongside the information gathered through the public survey and 17 face-to-face workshops held over the past 8 weeks.

    If you would like further information about consultations to help shape the next national disability strategy, please email disabilityreform@dss.gov.au . You can also visit https://engage.dss.gov.au/a-new-national-disability-strategy-for-beyond-2020/ to sign up to the newsletter for updates.