Consultation period

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

Discuss independence and wellbeing

This forum is closed for comments. All comments can be viewed by scrolling down the page.

The independence and wellbeing discussion document  is available at the links below:

The discussion topic included:

  • Financial security
  • Employment
  • Lifelong learning and skills
  • Personal support services
  • Health and wellbeing.

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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28 comments on Discuss independence and wellbeing

  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.

  2. Moderator - The Social Deck Moderator

    This discussion topic is about financial security
    What stops people with disability from having the money they need to live independently? Think about:

    Do you have enough money to buy food, pay rent or heat your house?
    Do you have the money or independence to do what you want, when you want?

  3. Lewis

    I work for Huntington’s NSW & ACT. Our members suffer from an incurable neuro-degenerative disease which means they will decline in cognitive capacity and ability to function over (on average) 20 years, during which time they will become eligible for increasing amounts of NDIS support packages.

    However, the NDIS often does not appear to recognise the on-going degenerative nature of this and other diseases, which may require more frequent review.

    It’s also crucial that those assessing and reviewing have at least a basic understanding of the condition the person is living with, otherwise too often assessments ask the wrong questions and produce the wrong answers.

    1. Moderator - The Social Deck Moderator

      Thank you for participating in the online forum and sharing your experience.

  4. Jen

    People with a disability need an income.

    I haven’t been able to find work I can do for quite some time My husband works so we are a single income family with children. I don’t qualify for Newstart because of his income – which is not more than 50,000/year.

    I don’t qualify for disability support because doctors where I live don’t understand my disability.

    We live under the poverty line despite my husband working hard and despite me having plenty of skills to offer in an accessible workplace or working from home.

    No income means I can’t afford to see health specialists or purchase things that help.
    I can’t afford to go to the dentist and my teeth are falling apart in mouth while I’m on a waiting list for dental treatment (which isn’t accessible either).
    No savings, no emergency fund, no way to apply for a home loan.
    I go without so our children and husband can maybe get some of the things they need.
    My story is not unique.
    If I had a spouse who withheld money, what would I do?

    1. Moderator - The Social Deck Moderator

      Thanks for sharing your story, Jen.

    2. Paul

      Great comments Jen! I have similar problems, so just posting to support what you say.

  5. Moderator - The Social Deck Moderator

    This discussion topic is about employment
    What can stop people with disability from being able to work or to have a career? Think about:

    Do you have a job or would you like to get a job? Are you interested in pursuing a career?
    Do you have ideas for how we can encourage more businesses and employers to hire people with disability?

    1. Paul

      It’s hard to know where this comment should go so I’ll put it here and see what happens.

      How many people at DSS who are working on this project have a lived experience of disability? What is that as a percentage of the people working on the project? Are they in senior roles? And what influence have they had on the process?

      Just one example, this forum doesn’t appear to be particularly user friendly, which is important if you want to encourage people to participate. There are much better forums available, so why was this one chosen?

      1. Moderator - The Social Deck Moderator

        Hi Paul. Thanks for joining the forum, and for your feedback.

        Putting the voice of people with lived experience at the centre has been a major focus through the engagement activity for the new Strategy. All of the national community workshops were designed in consultation with, and co-facilitated by, people with lived experience of disability. In designing the National Disability Strategy consultation, members of the National Disability and Carers Advisory Council who have lived experience, as well as a number of disability representative organisations have been extensively consulted and have directly contributed.

        Importantly, there are also specific community consultations with Aboriginal and Torres Strait Islander peoples, organised through the First Peoples Disability Network and led directly by Aboriginal and Torres Strait Islander local communities.

        This online forum was chosen to ensure all of the engagement activity for this phase of the National Disability Strategy Beyond 2020 consultations are captured in one place. The platform, designed by DSS, also meets accessibility requirements, privacy and other considerations for open participation. If you have any issues using the forum throughout the day or week, please don’t hesitate to contact our team directly at team@thesocialdeck.com.

        I will refer your specific question about the percentage of people with lived experience in DSS to the department to provide further information.

      2. DisabilityReform

        Thank you for your enquiry and for participating in the forum.

        Increasing employment outcomes for people with disability is a priority for our department; this includes a commitment to increase the diversity of our own workforce. A total of 7.2 per cent of the department’s staff identified as having a disability in June 2018, compared with an Australian Public Service (APS) rate of 3.6 per cent in December 2017.

        While privacy restrictions prevent us from disclosing specific details on individual employees, their role, seniority or disability, I can advise that departmental staff with disability have been actively involved throughout this process. Their personal experiences have helped shape the project and their involvement will continue as work progresses.

        More information on diversity and inclusion in the APS is available in the State of the Service Report 2017-18 published Australian Public Service Commission website (https://www.apsc.gov.au/).

        Once again thank you for your comment.

        The Disability Reform Team

      3. Paul

        Thanks for your comments.

    2. Paul

      The main thing that I believe is stopping me getting back to work, or at least getting back to work as soon as possible, is the fact that the health care system doesn’t see this as a priority. From the health care system’s point of view, or at least the view of the people in it like GPs and consultants, getting people back to work isn’t a part of their job, even though it is well accepted that having a job has significant benefits for people.

      How is this reasonable when the Government wants as many people to be employed, as exemplified by its (it’s only) “if you have a go you’ll get a go” policy? Shouldn’t Government policy be a bit more joined up than this?

      One thing that could be done is to extend the Health Care Homes system to all people with chronic conditions and make getting people back to work, and keeping them in work, one of the goals of the system. That will mean that the priorities of the health care system are far more consistent with my priorities, and those of the Government, unlike the current situation. And who knows, I might even be able to get back to work sooner.

      I expect that there are plenty of other areas where Government policy isn’t joined up and causes problems like this. Reviewing disability related policies in conjunction with the disabled people who use them, especially with regard to the way that they are actually implemented, would most likely yield a lot of benefits for both disabled people and the Government.

      1. Moderator - The Social Deck Moderator

        Hi Paul, Thank you for those comments and ideas on how the health and disability systems could work better for people, particularly around helping people to get into, back to or stay in paid employment.

  6. insitu

    I am commenting on behalf of a Family Mental Health Support group about flexible income support with Psychiatric Disability: work entitlements with the Disability Support Pension need greater flexibility and some understanding built into Centrelink policies of the intermittent nature of psychiatric disorders which fluctuate in severity over time. Many people on DSP have periods of relative mental stability when they could use their education and skills to build up a nest egg against leaner times – but are afraid to do so because they know that workplace stress can so easily precipitate a relapse. They then find themselves without a safety net as getting back on the DSP is viewed by many as virtually impossible now. Consequently, dependence on social security is greater than it need be with more supportive policies and skilled, informed interviewers.

    1. Moderator - The Social Deck Moderator

      Hi insitu. Thanks for joining the discussion and sharing this experience.

  7. Moderator - The Social Deck Moderator

    This discussion topic is about lifelong learning and skills. This includes the education system.
    What might stop people with disability from being able to learn, study or access education that is right for them? Think about:

    What has improved, or not, when it comes to children with disability being able to access education?
    What has stopped you from being able to study or to get more training when you want to?
    How can the education and disability systems work better together?

  8. garrarte

    Considering that the NDIS will cover approximately 475,000 clients, it is important to consider services to be provided under the NDIS Information Linkage and Capacity Building level as noted by the Productivity Commission 2019 Review ‘s recommendations. Services provided under ILC will be fundamental in reaching the past objective of increasing by 5% employment participation and overall mainstream society participation of clients affected by a disability.
    Promoting public awareness of the current level of employment participation by people affected by a disability may assist in facilitating behavioural change. Likewise supporting micro business and SME making workplaces more accessible at a minimum cost/ no cost may also help increase employment participation

  9. waynee

    >>> Financial security / Employment / Health and wellbeing <<<

    One aspect of being a disabled employee is that you can ask for "reasonable accommodations" to help you to participate equally in the workplace. Of course, you must also be able to perform the core duties of the position description and adhere to standard performance management processes meeting expectations. But what if your work environment changes in a way that adversely affects your ability to concentrate and perform at the same level? (for me having Autism and being hyper-reactive to noise, smell, movement etc, that might be removing all the office partitions and squeezing everybody together in half the space).

    Is it reasonable to say you can't be productive in that newer kind of office layout? Not necessarily, as it was considered unreasonable in one office I worked in. Even if it is reasonable to say you can't do it, then you have to work in a modified office layout away from your team or at home (in the unlikely event you are allowed to work from home). You then also have to explain to your team why you are in a different area/layout/at home… Does this all affect your ability to participate in your team and your ability to be promoted? I think definitely yes, most positions require excellent communication skills and collaborative skills, which are often not helped being out of the workplace at home or in a corner away from your team (there are exceptions of course for the brilliant).

    So this brings me back to the concept of universal design again, consider all disabilities and all types of people when designing workplaces or we can affect peoples ability to participate in that workplace equally to earn a living, but also to create a safe workplace which doesn't affect peoples mental health adversely.

    1. Moderator - The Social Deck Moderator

      Hi waynee. Thanks for joining the discussion and sharing this experience.

  10. Rae

    Generally speaking, the health care industry is one of the worst when it comes to accessibility for people with chemical sensitivities (which includes many chronic illnesses). A lot of doctors and other health workers choose with use toxic personal care and laundry products, and even have wall-mounted air ‘fresheners’ in their clinics. A recent search proved a safe clinic/doctor was impossible to find in my regional area. There are a few fragrance-free doctors to be found in metropolitan areas. Most understand the difficulty with travel so will provide online or phone consultations. This obviously has its limitations, and isn’t covered by Medicare.

    I used to see an osteopath who is one of the rare gems who choose to be fragrance-free. I saw him under Medicare’s chronic conditions scheme, but have now found myself unable to access the GP clinic to get another one, and they wont do phone or online consultations. Also, the limited number of allied health appointments available under this scheme is not enough to ensure ongoing improved health. Adding even just one or two visits would make a huge difference, as I cannot afford to pay 100% of the cost myself. I also NEED to see a safe, biological dentist who understand chemical sensitivities. I’m sure would help my overall health but there are none in this area and I’m not able to travel.

    Cost and availability are prohibitive in my choice of treatment, but more than that, much more education is needed in the healthcare industry, regarding Chemical Sensitivities and the complexity of ME/CFS.

    In terms of support workers, it has proven very difficult to impossible to find workers willing and able to be fragrance/chemical-free. This includes both personal care and laundry products that are often full of chemicals that make it impossible to be near them, let alone have them in my home. Most are willing to clean with safe products – as determined by me, but will not consider changing to non-toxic laundry AND personal care products. As much as I need assistance, I will be made more unwell through such regular contact.

    Devices, if borrowed, are usually full of fragrance from other users and/or cleaned with harsh and toxic chemicals – making me more unwell. A simple solution would be to keep some equipment to be used only for people requesting/needing fragrance-free items. If equipment is new, plastic/vinyl components are problematic, but so is cost and being unable to access a lot of stores due to poor air quality (eg, air ‘fresheners’), and fragrances worn by workers.

    1. Paul

      GPs can’t provide online or phone consultations because there is no MBS number for them.

      This can be solved by a change in Government policy, and would make a significant difference for lots of people, those with disabilities and those without.

    2. Susan

      If the government is serious about accessibility and inclusion, then fragrance free and wifi free areas need to become common. Fragrance and wireless internet broadcast cause significant disability – in Sweden this functional impairment is recognised as these people’s bodies cannot handle what the government and society have decided to allow as ‘normal’ environmental conditions, though they are not at all normal conditions for human beings. We are living with a quantillion times more electromagnetic radiation than our grandparents’ generation!

      There is no real need for fragrances, and internet can be accessed faster and more reliably through wired in connections. Actually previous electricity meters and water meters had far greater longevity than the new ‘smart’ meters that are affecting so many people’s health and creating serious disability. Overseas countries are removing wifi from schools after finding young people are especially vulnerable as dose over a lifetime is cumulative leading to greater rates of chronic illnes and disability. We are living in an uncontrolled microwave radiation experiment, creating more disability. I see no indication that the government takes seriously the large body of evidence (more than 26,000 scientific papers that can be accessed online, I think it is against this forum’s guidelines to mention one German universtiy website where these articles are available in English). and the World Health Organisation acknowledge that current levels of microwave radiation being used for mobile phones, electricity and water ‘smart meters’ etc is a carcinogenic risk.

  11. 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)
    + Lack of assistance with communication: 45%
    + Lack of income: 24%
    + Lack of disability related equipment: 23%
    + Lack of employment opportunities: 23%

    In the past have you (or your family member) ever had trouble using a mainstream service? These are services that everyone can use like doctors, hospitals, schools, and public transport.
    + Yes-always: 14%
    + Yes-sometimes: 14%

  12. Moderator - The Social Deck Moderator

    This discussion topic is about personal support services
    How can we make sure people with disability have the personalised support they need to live a full life? Think about:

    Do you think the people who support you, know what you want and need?
    What would help other people or services know what you want and need?

    1. Susan

      I think it is hard for people to know what you want and need when there is denial across society of the reality of the disability you have. So here is a description of some of what people would need to understand to begin to be open to hearing and taking seriously what we want and need.

      In particular, there are a range of functional impairments that are disabling and lead to people being on Disability Support Pension that are poorly understood. People say “I’m tired too” and it is true, very many Australians are tired, but not to the extent that they do not have the energy to leave their front door, or even their bed, but want so desperately to do this that they sometimes make extreme efforts that lead to looking sort of normal for a short period before ‘crashing’ which of course the public never see. Even family often do not understand. These disabling conditions include Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Electro-Hypersensitivity Syndrome and Multiple Chemical Sensitivity. The impairments are cognitive and physical, but NDIS often sees these conditions as medical, even if there is no known treatment and a person has been ill a long time.

      There is so much judgement about these conditions that many people who have them make huge efforts to ‘act normal’ if they still can, or these people disappear from public life. The isolation is profound and it is as if the person does not exist in the eyes of society. If government programs like NDIS and Centrelink showed more awareness of the reality of these conditions by funding people disabled by these conditions through NDIS and DSP without quite as massive effort as is currently required, that would make a real difference. Welfare Rights organisations long ago concluded that funding people with chronic illness earlier leads to better long term outcomes. That is not how Centrelink works – you stagger on for years usually before qualifying for DSP. This tends to entrench the condition further, making the possibility of regaining functioning less likely.

      The government would do well to take seriously the advice of Welfare Rights organisations across Australia. They deal with the reality of what policies work, and the whole economic picture.

      What people like me who have these conditions need is safety from public wifi – that is wifi free areas – low chemical housing options in public housing, taking seriously the problem of biotoxins like mould – following the recommendations of the Federal Government’s Biotoxin Enquiry. Bbetter funding for illness organisations – the funding is appallingly low to organisations for people with these illnesses – compared with other higher status illnesses like heart disease and cancer, yet these conditions are often as disabling as heart failure or late stage cancers.

      A friend who lives in housing for people in wheelchairs, told me he has funding for services he does not need. His home is kept clean, he has assistance for shopping if he wishes. People with serious long term illness often live in squalor because basic self care takes all or close to all their energy. Dishes do not get done, changing sheets is an exhausting, infrequent luxury. Mopping and vacuuming are not manageable.

      In summary, a lot of education is needed and policy change to reflect the reality of disabilities that currently receive very little funding. Organisations like NDIS need to make it policy to have disability educated staff – no decision makers in NDIS should be without long experience in the disability sector, and significant disability education. Tertiary qualifications can be useful, but some of the best Access Advocates are self taught people with disabilities in my experience – so long as they consider the full range of disabilities.

      1. Moderator - The Social Deck Moderator

        Hi Susan. Thanks for joining the forum and contributing these experiences and ideas.

  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.