ACKNOWLEDGEMENT OF COUNTRY

Good morning, and thanks for coming to this Forum on the National Disability Insurance Scheme for people with a brain injury. My name is Nick Rushworth. I’m the Executive Officer of Brain Injury Australia.

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This Forum is being held on the traditional lands of the Gadigal people of the Eora Nation and I wish to acknowledge them as Traditional Owners.I would also like to pay my respects to their Elders, past and present.

HOUSEKEEPING

A few bits of housekeeping before we begin. Toilets are directly behind you. There is also a toilet with disability access out the door and to my left.

Could I ask you to turn your mobile phones to silent? For those of you who need to be reachable, if I could ask you to try and leave the hall to take or make a call. Thank you.

More, MANY more, people wanted to attend this Forum than would fit in this space. So, we're videotaping today and it will be available shortly as a podcast. To re-assure the camera-shy, it will only ever be trained on the SPEAKERS. So that'll be no discouragement of questions from the AUDIENCE.

For those of you with special dietary requirements, your food will be on the tables to left outside the main doors to the Hall.

For those of you interested in seeing more of Royal Rehab, including its Brain Injury Unit- Jim Towers [POINT] Royal Rehab's Community Relations Manager will be your…guide - could I ask you to meet him outside, midway through lunch, at 1:30 p.m.

INTRODUCTION

In introducing this Forum, the last thing I want to do is pre-emptwhat I KNOW will be ITS invincible logic. And, while there’s no more certain death to an audience’s attention than bogging THEM down in YOUR troubles, a burden shared is a burden…halved. Or more. What I need to share with you, what keeps me awake at night, is Brain Injury Australia’s core representational-political challenge

Soon after I started in this job, I wanted to find out how many...CONSTITUENTS Brain Injury Australia had.I asked our (embattled) Australian Bureau of Statisticsfor their best estimate based from the most recent Survey of Disability, Ageing and Carers, conducted in 2012. They came back with 730,000 - crucially, people whose brain injury MEANS daily "activity limitations" and "participation restrictions".

That number often surprises people. As high. It's still likely an under-estimate, once you know that the Survey doesn’t – NEVER HAS – captured“persons living in gaols or correctional institutions” where as many as 80 per cent of prisoners report brain injury. Neither does the Survey reach“persons living in very remote areas”. Only three per cent of the NATION's population live there, but nearly half of them are Aboriginal and Torres Strait Islander - whose rates of brain injury - and it's a very rough rule of thumb - are 3 times that of the rest of the population.

And when you think about the circumstances under which such surveys are conducted - where the respondent has to KNOW they've got a brain injury, IDENTIFY as a person with a disability,as well as one they're willing to disclose to complete strangers, and strangers from...GOVERNMENT.

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What follows are, in summary, what the findings from local longitudinal surveys suggest about outcomes from…SEVERE…TRAUMATIC brain injury, “TBI”.As many as 9 in 10 return to care of their family; their average costs of care are around $100,000 per year; only 40 per cent of people living with severe TBIare employed 5 years post-injury; of all people with a disability, they have the second lowest representation in employment; half of all marriages involving a partner with a severe TBI dissolve within 6 years of injury; half report they have lost friends, have become socially isolated since their injury; they run a 60% likelihood of major mental illness during the course of their lifetime; and 1 in 5 will attempt suicide.

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Take anything from that grim catalogue and I reckon it'll make for a safe marker of unmet need. Yet - at the time I made my request to the Bureau –only? 16,000 people with a brain injury- out of a total of 310,000 –were using a National Disability Agreement-funded service.Only 21,000 - out of 820,000 – were receiving the Disability Support Pension.Only 2,200 people with a brain injury - out of 160,000 –were usingDisability Employment Services (and, while the TOTAL number of participants in Disability Employment Services has INCREASED 7 per cent since 2011, those with a brain injury have FALLENby 10 per cent). As at the end of March this year, only? just? 600 of the National Disability Insurance Scheme’s 25,000 approved plans were for people with a brain injury.

Perhaps most of you have long since solved the puzzle of high prevalence, MATCHED by high unmet need, CONFOUNDED by low service and support uptake. And there are, no doubt, a range of reasons why people with a brain injury SEEM – on these measures, at least – so DIS-INTEGRATED from their wider world.At the risk of gross stereotyping – but, but, but based on the sample of telephone calls I get - a potentially very large number of Brain Injury Australia’s constituents comprise men AND women, sometimes in their 40s or 50s, living in their bedrooms being cared for, more often than not, by…mum. (And what gets me out of bed in the morning is making the often rarefied work that I do as relevant as possible to THEM.)

Among that range of reasons – and I think these are as uncontroversial as they’re bleedingly obvious, sorry– among the reasons is that the lived experience of ACQUIRED disability is different and distinct from congenital or developmental disability. That brain injury, particularly TRAUMATIC brain injury, is often a...PRIME OF LIFE disability, THE watershed event in a life – where, in an instant, everything changes. And what those people profoundly disabled by their brain injury feel most keenly is having been cut adrift of both their past, and ITS imagined future, marooning them on an alienating, and seemingly fixed, present - in concrete terms; that they cannot do, or think, or feel as they once did.And adapting,coming-to-terms with disability, can remain a life-long struggle.

And THATbrain injury – like other disabilities – tracks social-locational disadvantage. THAT those people at the greatest risk of a brain injury are drawn from exactly the same populations as those at risk of ANY injury – from backgrounds of low income, low levels of education, and high levels of unemployment. Less than 1 in every 5 of the clients of New South Wales’ Lifetime Care and Support Scheme comes from postcodes with a mean taxable income of $55,000 and above. A 2011 study of over 3,000 stroke patients from Perth, Melbourne, and Auckland found those from disadvantaged areas were 70 per cent more likely to experience stroke than their more affluent neighbours.

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Brain Injury Australia’s fundamental reservation aboutthe National Disability Insurance Scheme remains unchanged since the bill for its establishment was drafted. That - while some people with a brain injury will be able to navigate the new quasi-market of the Scheme as easily as the disability services system of old - many will not. Specifically, Brain Injury Australia suspects thatfew people with a brain injury that makes them eligible for the Scheme are going to be able to readily transform themselves fromthe PASSIVE customers of disability services of tradition into active RETAILERS of their funding. Without an enabling infrastructure to do so. That infrastructure still isn’t in place, I believe, for what the Scheme refers to as “hard to reach populations”. As disappointing, is what appears to me to be the Scheme’s backpedalling – as part of its Information, Linkages and Capacity-Building, formerly the Scheme’s “Tier 2” supports – is a backpedalling on funding outreach efforts. Scheme philosophy remains, it seems, simply; build it, and they will come.

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I trust that you will find today a valuable…interrogation of the points of fit, and friction, between the Scheme and the lived experience of brain injury.

As good as it will be, I’m tempted to say talk is cheap…

Instead…I hope that out of today will come some concrete deliverable; a set of themes, recommendations even for optimising people with a brain injury’s access to, and participation in the Scheme - that will get the widest possible distribution through the National Disability Insurance Agency, governments and bureaucracies – PLURAL, and other key stakeholder bodies. The afternoon sessions promised to tie everything up, neatly, in a bow. So, I encourage ALL of you to stay to the bitter end.

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I wanted to thank the co-organisers of today’s Forum - Professor Gwynnyth Llewellyn and Zyra McAuliffe from the Centre for Disability Research and Policy at the University of Sydney. I'd also like to thank Jim Towers from Royal Rehab for the work he’s done in making today possible, and for HIS ongoing support of the work of Brain Injury Australia. And ask the Chief Executive Officer of Royal Rehab, Stephen Lowndes, to welcome you…Stephen.

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HANS REINDERS – Q&A0

…I’d now like to invite questions from the audience. We have some time/ 15 minutes. If, if you feel comfortable doing so - just for the benefit of the rest of the people in the hall/ room - if you could say who you are and where you’re from before asking your question, that would be appreciated.

[SCRIPT ex Zyra re. “Roger” from CDRP to morning tea…]

VICKI LOVEGREEN OAM

I’d like to introduce you to Vicki Lovegreen OAM. Prior to being hit by a car on a pedestrian crossing in 1991, 35 year-old Vicki was a full-time manager, a mother, a wife and an active sportswoman. She emerged from a three-month coma unable to walk or talk and with memory loss, and being told by doctors any further improvements were unlikely. Due to her courage and self-belief, the unrivalled support from friends and family and the unparalleled, full-time, support of a loving husband of 30 years - Ian - Vicki can now not only walk and talk but is also a qualified Social Worker and has also completed Diplomas in Aged Care and Disability. Please welcome Vicki…

  • You’re a relatively new participant in the Scheme, since the beginning of the year, right? How did you first hear about the NDIS?

Media

  • What do you remember about the first contacts you had with the NDIS?

Phone call while away doing our volunteer work. When I explained where we were I was told I wasn’t eligible because the gentleman said “we were basically on holidays and not at our residence even though we had a residential address.

[Volunteers for Isolated Students’ Education; support the education of students in rural areas especially isolated outback families involved with distance education…for which you, and your husband, who’s also with us today, received your Order, ORDERS of Australia]

  • Can you tell me about the planning process?

It was a bit over whelming – discussed so much so quickly too much to take in but in their favour the plans were documented and sent to use for our approval and the to be signed off and returned.

  • What ended up in your plan?

Physical help no cognitive help

  • What didn’t end up in your plan (that you wanted)?

Training aids i.e. computer, courses, technical equip i.e. phone/diary, support learning courses e.g. Telstra Platinum $180 for 24 hr 7 days a week support for mobile plus computer.

Safety modifications to my house – security front door and intercom.

It sounds like a lot of your physical needs were met –

  • The NDIS often talks about supporting people with disability “to live an ordinary life”. Did you talk about what that means, and about your goals?

Yes but there were still guide lines for what they though was necessary and essential as compare to my thoughts on what was needed to help me to try to up hold my goals and lead as normal a life a possible

  • It sounds like a lot of your physical needs were met – with the modifications to your home, and physiotherapy – what about some of the you have. Were those met?

We are still negotiating home modifications to be undertaken. We are in a different situation than others –our house is being renovated with the understanding of safe proofing for our future.

cognitive stuff, the cognitive challenges

– a plan to put another program on my computer but to date nothing has been done. Courses that I wanted to do I was told it was up to me to organise and pay for them. Telstra course I was told was not covered by NDIS – this was up to me to enrol and pay for.

  • Were the difficulties you have with remembering things, were they discussed?

No I contacted NDIS on several occasions with no replies until I threatened to take my concerns to higher authority. I was the told that I had an organisation that I had chosen for list. I was lucky I already knew about “Headstart” from working at the BIA so I had no hesitation in choosing this organisation BUT I wasn’t told what I had picked them for and how they would become an essential part of my wellbeing and survival.

  • What do you hope will be in your next plan?

More consideration for the cognitive help that is required.

Not having to fight and continually ask for help for the house modifications and my essential needs

More liaison re my plan.

  • Was self-management of your funding offered?

Yes

Did you take it up?

No

Why/ why not?

Because we are skilled or trained in this area.

  • I know you do a fair bit of advocacy for people with a brain injury. When you talk to other people who are in the NDIS, what do they tell you about their experience of it?

Because we are still coming to grips with NDIS and our own safety issues re the house I don’t speak about NDIS except to tell them to contact the office and make an appointment to see

  1. If they are eligible
  2. Make an appt to see a planner
  3. Take a carer with them to help you understand.
  4. Take a list of needs with you to refer to.
  5. Ask for the meeting to slow down or ask questions you aren’t sure of. This is your life – a life that doesn’t work by a bundy clock.
  6. If you feel you need to record the conversation take a recorder with you and ask them people if they would mind you recording the meeting for your own purpose.

Brain injury is often referred to as the “invisible” disability – that most people with a brain injury make a good PHYSICAL recovery, and their experience of disability – challenges to thinking, memory are things you can’t see. What advice would you give someone

NATASHA LANNIN:

Natasha Lannin is an Associate Professor in Occupational Therapy at Alfred Health and La Trobe University, and Honorary Research Fellow at The John Walsh Institute for Rehabilitation Research at The University of Sydney, The George Institute for Global Health and Florey Neurosciences at The University of Melbourne.

Please welcome Natasha…

IAN MAYNARD

Ian Maynard is the Deputy Chief Executive Officer – Operations for the National Disability Insurance Agency, based in Geelong. His previous roles have been Director-General of Queensland Health and Chief Executive of the Queensland Public Service Commission, Chief Executive Officer of Queensland Urban Utilities, and Chief Operating Officer for the Brisbane City Council.

Please welcome Ian…

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