LinkUp 145 The Newsletter of People with Disabilities (NSW) Inc ISSN 0810-5308 May 2011 President’s Column Hi all, I don’t believe we are a quarter of the way into 2011. I’m not sure if it’s just me, but I think the older you get, the faster the years fly by. I would like to draw to your attention the fact this year we at PWD will be celebrating our 30th anniversary and I would like you all to have some input into this event. I know there are a few founding members around who may have some memorabilia from that time. If you have, we would like to hear from you. We would also appreciate any ideas or suggestions you may have for our anniversary members event. I would like this to be a memorable occasion, because I believe 30 years is a great achievement. When I sit back and reminisce about our humble beginnings, I think we have done remarkably well to be in the position we are today. We are definitely the peak advocacy organisation in Australia and we have achieved this through the help of our staff and our members. I personally am very proud of our organisation as a whole. Our membership and events portfolio advisory group (PAG) have already started work on this event. If you have any input for the group to consider, please notify Daphnee Cook (daphneec@pwd.org.au), Ray Dooley (rayd@pwd.org.au), Joe Manix (theblindbishop@gmail.com) or myself (abbydais@bigpond.com) who would be very happy to hear from you. Remember you are the people who will make this event great. By all accounts, this year should be very exciting, with many new intiatives on the agenda, including the National Disability Insurance Scheme (NDIS), which I know our staff are working very hard on. We have just purchased two new cars which will enable our staff to do more work out in the field. Unfortunately, advocacy is not something you can do all from the office; there is a large amount of personal contact to be done with our clients, hence the necessity for the cars. As you heard before, the Mt Isa Office official opening went off very well and I am confident that they can do great things, as do all our staff in our other offices. That’s probably enough of me in this edition. I will go now. Yours Sincerely Jan Daisley President Guest Editor Robert Zoa Manga, PWD Vice-President Most Australians are directly or indirectly affected by disability. Most of us live, know or work with a person with a disability. One in five Australians has some form of disability and this rate will continue to rise given that Australia has an aging population. With this growing and aging of the population and the rising incidence and prevalence of disability within Australian communities, disability is expected to be a subject of interest of the entire nation. However, disability is rarely part of common conversation as it has always been associated with negative connotations. No matter the gender, the socio-economical status, no matter how physically strong, attractive, intelligent or how important we feel we are today, there is no guarantee things will be the same the next day. As soon as a person is a victim of a traumatic accident, catastrophic illness or aged-related progressive condition, the label of disability starts to define their whole being. It is soon forgotten they had abilities, interests and needs and are ordinary people seeking ordinary lives. They are mothers, fathers, sons, daughters, sisters, brothers, friends, neighbours, co-workers, classmates, teachers, etc. Rather than being portrayed as individuals to be pitied, helpless victims or heroic individuals overcoming tragedy, or being feared or ignored, people with a disability want to be portrayed as active participants in society. Their contributions enrich the lives of their communities and they are in pursuit of the same human wellbeing aspirations as the rest of the population. Human wellbeing has universal meaning and appeal, wherever individuals are in the spectrum of their life experiences. Like people without physical, sensory, cognitive and mental limitations, people with disability aspire to go to school, have a job, get married, own a house, choose where they live, socialise, be able to access their place of worship, leisure and sporting facilities and participate in the political process. As current state and national debates focus on person-centred care, individualised funding and the National Disability Insurance Scheme, it is important that those discussions continue to be informed by the real life experiences of people with a disability and their families and carers. It is vital that people with a disability and their families are genuinely included in discussions instead of policy makers relying on the financial or commercial expert’s account. Their full inclusion in their communities and the respect of their human rights remains paramount. This is needed every day and at all times if their contribution to their communities is to be maximised. These stories may provide opportunity for the general public to have a better understanding of the every day experiences of people who live with a disability and challenge some preconceived and stereotypical ideas. Aboriginal Disability Network http://www.pwd.org.au/adnnsw/ adnnsw@pwd.org.au phone (02) 9319 1422 tty (02) 9318 2138 fax (02) 9319 1466 24 Hours in my shoes Irene McMinn, PWD Board member My name is Irene McMinn and I am a deafblind person with mild cerebral palsy. I am a volunteer and secretary for Deafblind Association and go into the office at Enfield each Friday. I am also a board member for the World Federation of Deafblind and I am the representative for the Pacific Region. I start my day by feeling the vibrator of my alarm clock. 6am is time to get up and going. I start by putting in my hearing aids and making a cup of tea. To know when the cup is full I use a liquid level which vibrates when the cup is full. I enjoy my cup of tea and I start to get dressed. Staff come in about 6.30am to help me with my medical needs and to help me put in my ear rings. Then I am ready to go for a walk. My mobility instructor has taught me two different walks around the block. To do this I have to cross the road safely using my long white cane and trying to hear if there is a car coming. When I return home it is time for breakfast in the dining room, after which we always have a ten minute devotional time. Today it is Friday so I am going to work at the Deafblind Association (DBA). My friend is picking me up around 9.30am and while I am waiting, I check my emails. I get quite a lot of emails as it is my main means of communication with other people. To access the computer I use a Screen Reader (NVDA). While doing this, the vibrator attached to my TTY rings. I answer the TTY using the Braille display. It is the NRS relating a call from my mum. Janne arrives and I grab my cane and walk out to the car with her. (I am hoping to learn to go to work on the train soon.) We drive to Strathfield and stop to pick up the mail from the PO box. We get rid of the junk mail. We get back in the car and drive to Vision Australia where our office is located. As soon as we arrive, Janne makes a cup of coffee and I open the mail ready to scan it. After coffee, I scan the different letters one at a time and read them on the computer. If any of the mail is unscanable, then Janne will read it to me. The mail then needs to be documented in the correspondence file on the computer and filed away in the in-mail folder. Then I check the emails that have come in and answer any that need answering. Then I document the incoming emails in our correspondence report. I start a new report each month and these get printed and taken to our bi-monthly meeting. Then it is time for lunch. We take our lunch break and do the washing up. Now it is time to write any letters that need writing. Today we need to write two letters. One to the Deaf Society and to PWD. Janne has written one to Bakers Delight. We include copies for the outgoing folder and print them on letterhead and document them in the correspondence file on the computer. I am also responsible for the Braille library and place anything that comes in. Now it is time to go home. Janne drives me home and when we get there it is time for dinner. After dinner I read my Braille book. Staff come in to help with my shower and medical needs. Then I go back to my book. I usually make myself a hot drink and read until about 9.30pm before retiring. The National Disability Insurance Scheme: Paradigm shift or more of the same? Michael Bleasdale Executive Director, Leadership Team On 28 February 2011 the Productivity Commission handed down its Interim Report on disability care and support. This two-volume, 800+ page document is a substantial record of the long process of consultation with people across Australia and its findings reflect the body of evidence collated from the 603 submissions made to the Commissions and that presented at the public hearings. People with Disability Australia (PWD) made two submissions, substantially contributed to the In Control Australia submission and spoke at the public hearing in Sydney. In collaboration with the Australian Federation of Disability Organisations (AFDO), the Australian Human Rights Commission (AHRC) and the other disability peak organisations, PWD developed key principles about how a new disability support system must operate if it is to conform to the United Nations Convention on the Rights of Persons with Disabilities (CRPD). This article briefly analyses the content of the Report, looks at the extent to which PWD’s preferred options have been recommended and proposes what actions need to take place from now to ensure that Australia develops a radically different and improved disability support system. Significance of the report It would be hard to overstate the significance of this report. Quite clearly it is the most comprehensive and important report about how the disability support system in Australia needs to be reformed in order to achieve the outcomes that people with disability have been waiting for since the passing of the Disability Services Act in 1986. It ranks with the New Directions publication in 1985, (which reported on the outcomes of the Handicapped Person’s Review), as one of the key documents which, if its recommendations are followed will result in a seismic shift in the way that supports are delivered to people with disability. It recommends the establishment of a no-fault National Disability Insurance Scheme (NDIS), which will be funded by a guaranteed stream of income from the general tax system. A new National Disability Insurance Agency (NDIA) will be established to ensure that the funds are distributed nationally, most likely through locally-established offices and resource centres. The current role of the states and territories will change, as their funded disability services change to providing support under the new NDIS. A separate National Injury Insurance Scheme (NIIS) will be established for people who experience catastrophic injury, to bring uniformity to the lifetime care and support schemes already in operation in some states and to extend its reach beyond injuries acquired from vehicle accidents. Funds for supports will be delivered to the new system through individuals. This is a major change and a significant step forward in the way that supports can become much more under the control of those who use them. The Report talks about a voucher system, enabling people to allocate their support to chosen providers. Eligible people with disability will also be able to receive their support entitlement in the form of a direct payment, which will allow them to employ the people they choose to assist them. This ‘individualised funding’ is a key concession to the demands of peak bodies, users of disability services and carer and family groups, all of whom have drawn on a growing, international evidence-base that clearly shows people fare better when they are in control of their own supports. The Report recommends a three tier system. The first tier broadly addressing the needs of all Australians. It addresses disability at the systemic level, aiming to minimise the impacts of barriers upon people with disability, challenging community attitudes etc. Tier 2 is a more targeted referral system, which would aim to assist people with disability who may need to access goods and services which are available from generic providers and other systems – rather than requiring specialist disability supports. Tier 3 is the program of providing individuals with the resources and supports they need to go about their daily lives – basically an enhanced model of our current disability services system. Areas of Concern With a document of this size and scope there are bound to be areas that have not been addressed adequately, that may recommend actions which some groups do not agree with. The Productivity Commission has also flagged some areas where it is actively seeking the input of the sector prior to finalising the report (due 1 July 2011). A significant area of concern for us is the current exclusion of people with psychosocial disability (described throughout the Report as ‘mental illness’ or ‘psychiatric disability’) in the new NDIS. This is largely because people in this category are currently largely dealt with by the health system and there is some doubt as to how best to distinguish between health/medical-related supports and supports which are delivered in the community. The Productivity Commission is seeking feedback on where these boundaries should be placed. Similarly, the Report does not address the support needs of people living with medical conditions, such as HIV/AIDS, and no doubt the same boundary issues are relevant for people in these groups. PWD’s position will be clearly in favour of NDIS having coverage across all three tiers in terms of support needs, ensuring adequate, timely and targeted medical and health interventions are provided as needed. The coordination of different systems will need to be jointly addressed by NDIA staff and medical case managers. Another area of concern is the aged care cut-off, with this enquiry assuming the aged-care system will continue to provide for people who acquire disability after the age 65. The position of PWD and other peaks is that the age cut-off is arbitrary and that we need to move toward an interconnected and seamless system of support to all people who require it, regardless of age. However, in the interests of having a much better disability system constructed, it is important for us to address the particular challenges that face people with disability who will enter the aged-care system, most notably the potential for personal assets to be used to fund their own supports. There is little likelihood that the scope of the NDIS will be expanded to include the whole aged care system, so reforming the latter will have to take place after the NDIS is established. Where to from here? There are a number of other points of concern throughout the very large document and it would be true to say that the devil is in the detail. For instance, the principle of individualising all of supports is very strong throughout, but there remains a tendency to favour specialist disability services as the best and most trusted option for people with disability to take up. It is not explicit that the option of managing one’s own funds is going to be available to all people with disability, especially those whose capacity may be questioned. This is despite support shown for the role of Disability Support Organisations (DSOs) to work directly with people who choose to manage their own supports and provide them with a range of assistance with planning, employment, financial and other decision-making issues. The role of respite, in a system which should guarantee adequate support to people with high support needs, is still touted to be bolstered, even though it talks about options for individuals as they move through to adulthood reflecting community norms and facilitating movement away from the family home. It is perhaps the case that additional respite is meant to be provided for those people supporting children and young adults – but this is not clear. The appointment of ‘case managers’ to staff the NDIA is perhaps not in line with the role that will be required for people on the ground to manage supports across all three tiers. The Local Area Coordinator model from Western Australia should serve as the template for these positions, with its focus on community development skills and occasional advocacy (especially in negotiating access to housing, education etc) – so why not call them Local Area Coordinators? The Report recommends implementation occur in stages from the second half of this year, with the development of a COAG taskforce, through to national rollout in 2015. It is not anticipated that the final shape of the NDIS will be agreed and ready to implement until 2013 and legislation will need to be enacted during that year to prepare for the mechanism and infrastructure required to make it work. The Report recommends the second half of 2013 is spent putting the infrastructure in place where initially in 2014 it is rolled out in one region of Australia, to around 10,000 clients, moving to general coverage across Australia in 2015. The Productivity Commission does not anticipate it will produce a radically different Final Report, so submissions and hearings being held currently will be used to fine-tune the findings and recommendations of the Interim Report. PWD will make a submission on a number of key points and continue to press for greater recognition of CRPD as the frame of reference for evaluating the suitability of chosen options. The real work will come when the taskforce is established, or even before, lobbying governments to establish the NDIS in the first place. Whilst there appears to be significant support from politicians and commentators and across the disability sector, when the issue of moving disability services from the direct control of the states and territories comes up for serious consideration, we can anticipate some opposition. Some of the recommendations for the way the supports are delivered to the individual, such that people with disability have control over those supports, need to be implemented without compromise – otherwise we will end up with more of the same. So, despite the tight timeframe for responses to the Interim Report (end of April 2011), the work of peaks like PWD is only just beginning. We will need to be continually advising our politicians and the people charged with implementing the new system right up until the time it is rolled out in 2015. So, this new NDIS will be transformative, capable of bringing about a true change in the disability support paradigm, through the control that it promises to those who receive the support. However, there is much more work to be done by peak bodies and groups of people with disability, to ensure the ideas and recommendations become reality. PWD Regional Offices New South Wales Queanbeyan Region – Lynette Russell Office hours: Mon-Thu 9am-5pm Southern Highland/Southern Tablelands – Gareth Elliott Office hours: Mon-Thur 9am-5pm Sutherland Shire – Cath Posniak Office hours: Mon-Thur 9am -5pm Queensland Bundaberg Region – Luke Gale Office hours: Mon-Fri 11am-4.30pm Fraser Coast Region – Alan Grimsley Office hours: Mon-Thur 9am-5pm Logan City Region – Tracey Moffatt Office hours: Mon-Thur 9am-5pm, Fri 8am-12pm Mt Isa and Lower Gulf Communities – Valerie Brown & Dennis Willetts Office hours: Mon-Fri 9am-5pm Sunshine Coast Region – Catherine Hall Office hours: Mon-Fri 9am-5pm If you would like advocacy support call us on 1800 422 015 Case Study – PositiveLife NSW Lance Feeney, Senior Project Officer, Systemic Advocacy P eter* is a 55 year old gay man who lives alone in an inner city apartment which he rents from the Department of Housing. He was diagnosed with HIV in 1986. HIV stigma and discrimination have impacted on the level of support from his family and the death of many friends in the early years of the epidemic has affected his ability to develop long term relationships and limited social opportunities. Peter has been taking antiretroviral treatment since 1992. The HIV infection has been successfully controlled, however, he has been diagnosed with hypertension, chronic depression and elevated blood lipids – all requiring ongoing medication. Low energy and chronic fatigue from HIV and depression have increasingly limited his activity over the last 10 years. Peter was employed as an academic until 2009. At that time, his failing health forced him to work part-time and then stop work entirely. In 2010, he was hospitalised for six weeks after a stroke and he is now susceptible to further episodes. His verbal skills, memory and ability to concentrate have been impaired. Osteopenia resulting from long term HIV infection has produced hairline fractures in his feet and his mobility and ability to exercise are limited. In 2010, after exhausting his savings, Peter was granted the Disability Support Pension. Reduced mobility and low energy have limited Peter’s activity and ability to socialise and participate with his professional and social networks. He says that he has become increasingly isolated and his quality of life is vulnerable to sudden changes in his health. With significant support from a range of government, medical and community support services, Peter manages to live independently. This support includes Centrelink benefits, public housing, community home nursing and assistance with shopping, cleaning and cooking, transport to medical appointments, social services and peer support services. Peter also uses a community food distribution network and frequently attends a local peer support drop-in centre that provides meals when he is feeling fatigued or unwell and in need of company. A sudden or significant worsening of any one of Peter’s multiple health conditions would impact on his independence, ability to care for himself and further limit his social support opportunities. As a consequence, his mental health and quality of life would be significantly impacted. Peter rises at 6.30am. After making a light breakfast, he reads the papers - if financial circumstances permit. Members of a local club come to his small apartment to play Bridge a couple of mornings each week. He is also a volunteer at a small not-for-profit organisation; however he is finding that concentrating on activities has become more difficult. One or two days a week, he is taken for lunch by friends. Social opportunities are often limited by his finances and many of is friends are also living with HIV and receiving Centrelink benefits. Changes in Peter’s health make his quality of life and independence particularly vulnerable. Although medical services are essential to maintaining Peter’s health, his quality of life, social participation and ability to maintain independence are wholly dependent upon a range of community support services who struggle to meet an increasing complexity in demand. *Not his real name. 24 hours in my shoes Jan Daisley, PWD President When I was asked to write a short story about a day in my life, I thought ‘which day do I choose?’ Ninety-nine per cent of my days are drama filled and sometimes traumatic. So I decided to bite the bullet and choose a typical day. Many of you may find what I write rather unbelievable but I assure you it’s all true. My day starts at 5am. I listen to the news on my radio while I wait for my carer to arrive. At 6.30am I hear a knock on my door and I am horrified to hear a voice I never heard before. I brace myself for the ordeal to come. With much difficulty and stress, I talk the carer through my personal care routine. By the time they’re finished I am worn out. I try to relax over coffee before embarking on my day’s agenda. This in itself is quite a challenge as I hate being late for appointments. No time for lunch, as the morning shift draws to a close. I then have 30 minutes on my own to unwind and de-stress before the afternoon shift arrives. I don’t believe my ears! Another rookie arrives and also without a clue! Once again I have to put my life on hold to accommodate staff. The afternoon and the evening pass very slowly. I get more and more frustrated as the hours disappear. I have so much to do with telephone calls and emails and staff are not ready to assist me. After dinner, which is probably quick, easy and microwavable, I sit in my room quietly because if I open my mouth I will probably say or do something I will regret and I’d be called ‘abusive’. So I bite my tongue. Eventually it’s bed time and the drama starts again. By the time I get chucked into bed I am pooped! Sometimes I think people would take more care with a bag of chaff. I then lay there usually uncomfortable until the next shift arrives. If I’m lucky, I might get two or three hours sleep before It all starts again. I do have good days when everything goes smoothly. Unfortunately it’s the bad days I remember. I would like to quote a title of a song to sum up my life since acquiring my disability. I know other people are worse off than me and that’s what keeps me going. Yes, “some days are diamonds and some days are stones” and I never ask anyone to walk in my shoes. National Disability Insurance Scheme Lesley Hall CEO, Australian Federation of Disability Organisations In the nineties I was part of a working group that was advocating for the closure of institutions in Victoria. Over the previous 10 to 15 years a number of institutions had already been closed down and people had moved into community residential units. Whilst these were vastly better than where the residents had come from, the working group knew that they were still not the best way to house and support people with a disability. We racked our brains for answers. The Internet had just arrived and in my wisdom I put up my hand to do some research. In those days my organisation had only one computer which we all shared and we were not connected to the Internet. A friend of mine worked in a university and had been using the Internet and so a couple of us from the working group went down to use her computer. I can’t remember what we typed into the search engine but I do remember what came up. Page after page of information about individualised funding. This was an idea that was being put into practice in many parts of North America. Back in the 1980’s disability rights activists had also been advocating for a disability allowance and as well there had been many conversations about dedicated taxes to fund the supports that people with disability required to live full and active lives in the community. During the 1980’s a national attendant scheme was introduced as well as many other programs of supports both nationally and in the different states. The carer lobby was successful in getting supports for carers in particular respite options which largely sidetracked the sector getting adequate systems of support. Much more funding was put into the system from all jurisdictions. Despite this, the funding was never enough to properly support people with disability in all areas of life with huge waiting lists for accommodation and support assistance throughout Australia. People kept falling through the cracks as they found themselves not quite eligible for a particular program. Finding out what was available was an adventure in itself. The support system grew without any overall strategy or guidance into the mess it is today. Not only is it a mess but an unsustainable one. This is where the Productivity Commission Enquiry into Lifetime Care and Support comes into the picture. When the Productivity Commission (PC) draft report was released on the 28 February 2011, it was a great day for people with disability. The report details not only how our current system is failing people with disability but also states we cannot continue in the direction we are going. More importantly the report advocates for a system of support that will assist people with disabilities to achieve to their utmost potential as workers, students, friends, family members and citizens. Finally it advocates that the way to achieve this is through supports being attached to the individual with the funding being controlled by the individual. It has been 30 years in coming but the day has arrived and we can no longer go back. There is still however much more work to be done. A lot of the detail in the draft report needs to be clarified or changed and we need to get all tiers of government to agree to implementing the new system. Some of the things the report is recommending that need to be addressed are: Who will the scheme cover? The report uses the World Health Organisation’s definition of disability whilst disability advocates argue that definitions should conform to the United Nations Convention on the Rights of Persons with Disabilities (CRPD). One of the fundamental questions in looking at the recommendations of the PC report is do they conform to the CRPD? Advocacy and disabled persons organisations are putting together a submission which analyses the PC report against the CRPD. Certainly if many recommendations from the report are implemented we will be going a long way towards implementing the convention. However, there are some recommendations and argument within the report which are contrary to the convention. For example, restrictive practices and the presumed inability of some people to be able to make their own decisions. On page 8.30 the report says: “For people with severe intellectual disabilities who exhibit challenging behaviours (such as harming themselves or others) at times it will be in their best interests (and the interest of their carer and those around them) for restrictive practices to be used.” This is in clear violation of Article 14 of the CRPD on liberty and security of the person, Article 15 on freedom from torture or cruel, inhuman or degrading treatment or punishment and Article 16, freedom from exploitation, violence and abuse. The report also states that where significant intellectual or mental health disabilities are present people with disabilities may not be able to self direct their funding by themselves. In making this statement the PC report fails to take into account Article 12 of the CRPD equal recognition before the law. Article 12 is one of the most fundamental articles in the CRPD yet the PC report not only does not acknowledge it but fails to discuss the issue of supported decision making and instead resorts to the preconvention paradigm that there are people with disabilities who can never be involved in their own decision making. Threaded throughout the convention is also the basic tenet of ‘nothing about us without us’. In particular Article 4 talks of the requirement of people with disabilities and their representative organisations to be involved in all decisions that affect their lives. Despite overwhelming evidence from the UK of the success of self assessment the PC has opted for assessments from professionals. In addition it is recommending that people with disabilities do not control the governance structures. The other area of concern is the role of advocacy. There is little understanding of advocacy and this is evidenced in the failure to address it as a necessary part of the lives of people with disability. A national campaign called Every Australian Counts is underway. So far over 10,000 people have signed up to the campaign. To join the campaign google Every Australian Counts. On May 2 and 3 there will be a National Disability and Carer Congress in Melbourne. 1000 people will gather to hear politicians and policy makers talk about the National Disability Insurance Scheme (NDIS). In conclusion the NDIS is within our grasp. It offers exciting possibilities for people with disabilities. But it’s not going to happen unless we are all in behind it. Why I support a National Disability Insurance Scheme Micheal Herdman, PWD Member I am a proud disability rights activist and have been involved in the disability rights sector for about 40 years. I have been a member of People with Disability Australia (PWD) for 31 years and received life membership in 2001. Between 1997-2001 I sat on the board of PWD. I have an intellectual disability. I am now currently on the Board of Directors for the Council for Intellectual Disability (CID), who I have been with since 2000. I believe a National Disability Insurance Scheme (NDIS) will be the most important development in the country’s recent history, including universal health insurance. This is why I am so passionate. I have made two submissions to the Productivity Commission this year and last year because I believe it is very important to have the voice of people with disability guiding the way in which any new scheme is designed and implemented. I believe people with disability must be involved in every part of the decision making process and implementation of any national disability scheme. It is our lives that will be most affected by its outcomes and regardless of age, background or disability type, so no group should be left out. I think an NDIS will be giving people more of an opportunity to have a say and represent themselves. I am lucky – I can self-advocate and am very active in disability organisations, but not everyone has that opportunity. People should have the supports to be able to represent themselves. I have been disappointed in the past when policy has been made via State or Federal bureaucracies, where people with disability have to go along with the decisions that affect their lives, but have had no say in the matter. As this proposed system will affect people with disability, it is they who should have the most say. I also believe we must be vigilant when advocating for change. We’ve seen in the recent NSW election that the new Premier is not keen on health reform – does this mean he might be opposed to an NDIS? We have to keep watch on our politicians and make sure they realise the importance of this scheme. Personally I can see a lot of benefits. Control over my funds means I would have control over my future – and help me pay my bills! Should I wish to acquire a motorised scooter later on in life I should be able to acquire one. If I have a really bad case of arthritis and I’m not able to walk, what will happen in twenty or so years? I would be happy to know that I was covered. With an intellectual disability, I only have low support needs. But that means I am basically left to my own devices, even though I still have support needs. If I had more money I’d get a van or something that I could afford to get myself around. Transport and mobility is a huge issue for people with disability. I also think a high priority of the scheme should be to keep people with disability in meaningful employment or help them return to meaningful employment after acquiring their disability. People need to be supported and encouraged to be kept in the workplace maintain their skills. The employers I have had in my working life have been really understanding, particularly my current employers, The Salvation Army, have been very understanding and accommodating. Not everyone has an accommodating boss like that though – and we need to have a system that makes that easier. Finally I would like to put in a footnote. When this comes to the Council of Australian Governments’ (COAG) meeting in October in Perth, if any government is stubborn and unwilling to support an NDIS, each Premier should forfeit their funding for the next three years or the remainder of their term. If that doesn’t get their attention I don’t know what will! It’s time governments and politicians realised how important this change is for people with disability in Australia. 24 hours in my shoes Robert Manga, PWD Vice-President Last Friday started like any other day. The alarm clock that signals the beginning of our day rang at 6am as usual. My wife Kara jumped out of bed to stop the noisy clock as it was still too early to wake our eight year old son. A couple of minutes later, there is a noise at the main door as the morning’s carer opens the door. No time to chat with Kara about our respective days before there is a gentle knock at our bedroom and the carer enters, pushing the hoist. Days since my acquired spinal cord injury have to be organised with military precision in an attempt to minimise the risk of things getting wrong, with little concern of family’s privacy. Very quickly, the sling is pushed under my body and I am hoisted from bed to doing the same in the next room and she has to be even faster if she’s to get dressed in our bedroom. After attending my morning hygiene, it’s about time to be rushed to the bed and quickly dried-up, dressed and I’m hoisted this time to my electrical chair. I organised my taxi the day earlier with the most reliable taxi driver I’ve had in the last few years. He is to pick me that morning from Olympic Park to take me to Balmain where I will attend my duties as a panel member of the Guardianship Tribunal. My carer successfully got me ready by 7:30am as agreed a day earlier and I had enough time to take my pills, have a glass of water and eat an apple for breakfast. My wife and son left earlier and minutes later, I was in the lift that took me to the ground floor (thank God it was working that morning). My wheelchair-taxi driver and I had spoken the day before and he was meant to pick me at the entrance of my apartment complex at 7:45am. I was to reach Balmain no later than 9am to prepare with two other fellow panel members, the matters to be heard throughout the day. Past experiences of calling the Taxi Operator Services to organise for an accessible taxi have had unsatisfactory results. Unfortunately for me, despite prior arrangements a day earlier including a text message being sent when I got up that morning, my driver was nowhere to be seen. After waiting for 15 minutes I finally called him, expecting to be told that he was held-up in a traffic-jam, minutes away. I was shocked when the driver told me that he was at the airport and he had forgotten about our arrangement from the previous day. I was stunned and did not know what to say except to hang-up and try my luck with the Taxi Operator base. By now, it was 8am and I quickly explained the situation that I found myself in and begged them to try to allocate another taxi as soon as possible. It was 8:45am when another wheelchair taxi arrived and by then I had called the Tribunal explaining that I would certainly be late and hopefully I would still make it and arrive before 9:30am when the first hearing began. This new driver, while acknowledging that he was not familiar with this area of the city still refused to listen to my instructions regarding the most time efficient route. I could only ponder why but decided to remain calm with the hope the chosen route would save me from further embarrassment. Oh God! It’s Parramatta Road at peak hour. By the time I finally get to my destination, it is 10:15am, almost an hour after the scheduled time for the first hearing. It takes all my resolve to contain my frustration, anger and embarrassment as I join my fellow panel colleagues. Proceedings could not commence until I got there as they were scheduled for a jury of three panel members. As a result, all hearings that morning ran about an hour late. Whether because of the whole stressful situation or because I didn’t have time to check my urine bag, by the time we stopped the morning’s hearing, my bag was leaking. It was an additional humiliation and the short break for lunch that day was just enough to get myself cleaned up. By the time the hearings finished, it was after 5pm and fortunately the same driver who let me down in the morning was there waiting ready to drive me home. Because I got to the taxi at 5:15pm, 15 minutes after the agreed pick-up time, the taxi meter was running and it showed a fare of over $15 by the time we left for home. I was penalised for being late but did not receive anything for waiting over an hour in the morning. I arrived home almost simultaneously as my family at 6pm. I only have half-an-hour to eat before my very reliable evening carer opened the door. Minutes later, the routine hoist, shower chair, shower and hoist and bed restarted and it was 8:45pm by the time I was finally in bed. What a long day. Trust me. I’ve had worse than that in my life. With every day, I had become more resilient and accepting that my life, unlike the one I had before, will have its share of uncontrollable events. As independent as I aim to be, you are only independent as the factors beyond your control allow you to be. During the entire day, I had hardly spoken to my wife or to my son and they endure the same frustrations. By the time my wife finishes her work commitments as well as attending my son’s extra-curricular activities, she is so exhausted and falls asleep as soon as her head touches the pillow. Let’s just hope the bloody air mattress will not trip the dysfunctional alarm in the middle of the night as it did the night before. Word of Mouth: How YOU can help Daphnée Cook, Communications and Membership Development Manager As PWD celebrates its 30th year of defending and promoting the rights of people with disability, it’s important to recognise the role you, our members, have to play in ensuring the organisation continues to grow and flourish into the future. You might not realise it, but encouraging your friends and family to join PWD is one of the most simple, yet most effective, things you can do as a member. More PWD members means greater diversity, greater impact, and stronger testimony for our advocacy work. More members also means more people are learning about PWD’s mission, vision and values and more voices are joining the call for equal rights and accessible communities. As a member of PWD, you know exactly what the organisation stands for and what we’ve been working to achieve over the past three decades. So who better than you to spread the word about the organisation and introduce it to people who are yet to recognise its value! It’s a well-recognised fact that while many people ignore calls to support a cause via broad advertising, they will always pay much more attention to this cause if someone they like and respect encourages them to get involved. So after reading this edition of LinkUp, I encourage you to speak to your friends, family and colleagues about PWD and why you are proud to be a member of the organisation. Give them a copy of LinkUp, inspire them to visit our website or advise them to contact me at daphneec@pwd.org.au or telephone (02) 9370 3100 for more information. For information about the Productivity Commission Inquiry and upcoming events please see the April PWD E-Bulletin ‘The Productivity Commission Inquiry into Disability Care and Support’ at http://www.pwd.org.au/documents/pubs/EB-PCInquiry-April2011.doc Contact Us LinkUp is the newsletter of People with Disability Australia Incorporated. We welcome contributions from members. Editorial responsibility for this edition lies with Therese Sands, Executive Directer, Leadership Team. © 2011 People with Disability Australia Incorporated Copyright of cartoons or photographs remains with the supplier unless otherwise indicated. If you would like to receive LinkUp in an alternative format or have an enquiry please contact PWD. 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