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Community Affairs Legislation Committee
21/02/2013

COOPER, Dr Margaret Maxine, Convener, Advocacy Working Group, Post Polio Victoria

HARRIS, Mr Rod, Advisor to Board, BrainLink Services

PICKERING, Miss Jill Elizabeth Margaret, President, Post Polio Victoria Inc.

STRUGNELL, Ms Sharon, Chief Executive Officer, BrainLink Services

[15:30]

CHAIR: I welcome representatives from BrainLink Services and Post Polio Victoria.

Ms Strugnell : Thank you very much for having us here today. BrainLink Services strongly supports the introduction of the NDIS. It has the potential to remove many of the inequities and inefficiencies of the current system and to substantially improve the quality of life for people with chronic illness and disability. As an organisation dedicated to supporting families and carers of a person with an acquired brain injury or neurological disorder, we believe it is vital that individuals with a disability, or those likely to become disabled over time, are provided with the full support they need. The bill should reflect this. If this is done, then the burden on families and carers is dramatically reduced.

BrainLink is consulting extensively with our partner organisations around Australia, and this is reflected in our joint submission with Brain Injury Australia. Membership of an acquired neurological group also ensures we bring out the voices and concerns of many consumers in a collaborative way. Together, this group strongly believe that providing accurate and relevant information and support as early as possible to assist families navigate services works best, and often keeps individuals out of the disability system for some time, as long as the response is quick and left to organisations with expertise and real understanding of degenerative disorders.

Clear assessment and referral processes and protocols for the interface between the NDIS, health and the aged-care systems must be developed, supported and implemented to this facilitate timely, coordinated, inter/multidisciplinary care and to reduce duplication in crisis management. Our concerns are to make certain that the varied and complex needs of individuals and families affected by acquired disability are reflected in the legislation. We feel the NDIS bill fails to take into account the cognitive capacity limitations of many participants, or prospective participants, with an acquired brain injury.

In particular, the bill should state, firstly, that participants or prospective participants should have access to independent and funded support to undertake tasks that are required by the scheme, including engaging in the application process, preparing their support plans and taking legal action to claim or obtain any compensation to which they are entitled. Secondly, if a participant makes a key decision about their participation in the scheme—for example, to exit the scheme or cancel a nominee—(1) there should be a specified cooling-off period that allows participants to change their decision and (2) the CEO should inquire into those decisions to ensure they reflect both the participant's direct wishes and best interests. Thirdly, if a prospective participant is required by the agency to undergo a medical, psychiatric or psychological examination for any purpose, to ensure equitable access the agency must pay for any such required examination, including any associated travel costs where a suitable examiner is not available in their local area or for an unreasonably long period of time. I will now hand over to Rod.

Mr Harris : We would also argue that section 22 of the bill, which excludes people over the age of 65, should be removed. The exclusion of people under the bill is contrary to the UN Universal Declaration on Human Rights; it is certainly contrary to the Australian Anti-discrimination Act; and, in Victoria, it is contrary to the Charter of Human Rights and Responsibilities, the Victorian anti-discrimination act and the Victorian Disability Act. In fact, Victoria is the only state which has embraced people who acquire a disability when over the age of 65. People who acquire a disability when over the age of 65 or, indeed, people who first require a service for their disability when they are over the age of 65 have been able to access services in Victoria since the proclamation of the Disability Act. Someone aged 64 who acquires a disability needs the same services as someone aged 66, subject to assessment. We are not talking about two years making a difference; it is about same-same. Someone acquiring a disability at age 64 has an entitlement, and Dr Dyson talked about the problems with the word 'entitlement'. But there is a big difference between the word 'entitlement' and eligibility: one can be eligible and never get a service; if one has an entitlement, one has a right to fight for that service, and I think it is important that we look at that.

With aged care, you are entitled to aged care if there is enough money and if the services are available. The National Disability Insurance Scheme will support a wide range of supports to address unmet need, and I think it is important that we recognise that aged care only delivers a set range of services and a set quantity of supports for each person. It is not needs based. It is actually limited by money and quantity. In aged care, people with disability will not have access to disability aids and equipment. In aged care, people with disability will be limited to about 15 hours of support a week. In aged care, people with disability will not be able to access the wide range of allied support services and health services that help them retain their independence and do what the NDIS wants: keep them part of the Australian community. In aged care, people with disability will not have access to flexible respite, which is crucial to preventing damage to carers and to helping families survive and live well. We think there are actually three strategic solutions to this problem. You ask me and I will tell you!

CHAIR: I think it might be better for you to give us the three now, in your opening statement.

Mr Harris : Okay, sure. Obviously, the first one is: wipe out the age-65 barrier. It is pointless. The second one is that we amend the bill to allow people over the age of 65, as the Productivity Commission suggested, to access aged care, but, when aged care cannot provide enough or the right services, that those people have the right to access the National Disability Insurance Scheme. The third option is one that is in operation at the moment in relation to Veterans' Affairs and superannuation, where people can make application to be a class of person that has an entitlement or an eligibility under the act. So Veterans' Affairs has its review committee that looks at injuries in war or diseases that may have arisen out of overseas service, and they can be included or excluded.

Similarly, the Superannuation Act allows people with some disabilities to have early access to their superannuation to meet the needs created by their disability.

CHAIR: Thank you, Mr Harris. Dr Cooper?

Dr Cooper : I was going to do a PowerPoint presentation because I talk too fast and sometimes it is easier to look at pictures.

I am here on behalf of Post Polio Victoria. I am just one of a cohort of people who were disabled early in childhood and have carried the expense and the difficulties ever since. I would currently be excluded under NDIS because I am 69, and so would many of my friends and colleagues.

Polio is an infectious viral disease. There is no cure. There is no treatment. One in 200 sufferers gets paralysed. There were lots of epidemics in Australia up until 1956, roughly, with a few isolated cases in the 1980s and 1990s. Polio destroys at random the nerve cells that send messages to your muscle cells, so you can have one strong shoulder and a weak hand on the same side. So you have to learn to live with patchy movement. One of our key problems is that, when the nerve cells are destroyed, sometimes the neighbouring nerve cell takes on the task of sending messages to two or three or four muscle cells instead of one. That eventually leads to post-polio syndrome, which I will get to. Because we have uneven muscle strength, our bones often will pull crookedly, resulting in spinal curvature, leg curvature, whatever, which leads eventually to arthritis or whatever.

I will talk now about the treatment. If you look at the picture of that baby there, that is not unusual. Most of us were put into double Thomas splints to keep our bones straight. It did not always work. But you can see from the picture that people grow up from that experience with some trauma, and they are very reluctant to get back into medical care or aged care or anything else in case they lose control again. People never forget that. Apart from the splinting, we had physiotherapy. The problem was that, with physiotherapy, calipers, leg braces, crutches, whatever, we still went on to develop spinal curvature. You can see that skeletal picture of King Richard. He has got a lovely scoliosis. I am not saying he had polio, but that is the clearest, prettiest picture of a scoliosis I have seen in a long time. You can see from the way he would have stood that he would have had uneven wear and tear on his hips, upper spine and lower spine. How he lived as long as he did I do not know—and the poor guy was mutilated post death, which is horrible.

Some people seem to recover—and we will get to that later. Other people are obviously more disabled. There is a picture of four of us here under the heading 'Special schools'. We paid for our own orthoses. We paid for own braces. We all had spinal curvatures. We all went on to work full time, for anywhere from 27 to 40 years each. We all ended up as carers for our parents—some are still caring; my father is 96—and relatives that had problems. So we all had full, productive, taxpaying lives. We fully funded our own care until the introduction of the aids to disabled people, maybe in mid-nineties. It was under the Hawke government. I am not exactly sure about that.

We stayed in touch with each other, which helped us deal with the psychological effects. We got to the point of being able to leave school, go into work, become parents or whatever, by the intervention of neurologically experienced physiotherapists, doctors, OTs and orthotists that helped us manage ourselves. As far as we were concerned, what we left school with was what we got for the rest of our lives, and we thought we could deal with that. We went out into the workforce and we all faced discrimination.

Unfortunately, the only picture I have of Elizabeth Hastings is in her obituary. She was the first Disability Discrimination Commissioner. She had polio. She was an immigrant to Australia at the age of 18 months, and her family faced an immigration battle because she had already had polio. But they got in, and of course she went on to do all sorts of amazing things.

When I was at university, two friends and I were the only wheelchair people there. We could not get into the student union, and we had to do all sorts of things to get them to build a ramp so we could go and get a cup of coffee. That continued on for the rest of our lives.

What we have in the polio field is two categories. One is the young ones coming in from Africa, Vietnam, Pakistan and India who need full assessment, the same as we had—neurological expertise, physios, orthotists and all sorts of things. At the moment there are only two clinics in Australia that provide that care—Jill?

Miss Pickering : One is multidisciplinary. It is very small. And the other is similarly small, yes.

Dr Cooper : So we have the new group looking for care, and if they are lucky they land in Perth or they land in Melbourne. Otherwise they have to—

Miss Pickering : Very lucky!

Dr Cooper : Very lucky, yes. The second group are us. We are older people. There is a picture of neurone cells here. It is a lovely picture. This is a good theory, and it seems to be borne out by evidence. It is that in the beginning the nerve cells branch out to other muscles. As you get older, over 25, you start losing your neuronal connections. You get a motor neurone loss. We experience it much faster than other people, and eventually the neurones give up the ghost and say, 'I will not innervate this muscle cell anymore.' So your paralysis increases as you get older, approximately 40 to 60 years post infection. It hits the 40-to-70 age group, because by that time you have your normal motor neurone loss compounded with the postpolio loss. Then you also have the arthritis because you have been walking unevenly or you have a scoliosis, and your knees and hips and back start to complain.

Then there is a psychological thing: you get increased weakness. You cannot breathe at night. You are losing your independence. You do not know whether your husband, your wife or your partner is going to stay with you. You do not know if you can keep your job going.

Around Victoria, around Australia, we have developed a network of postpolio support groups and information and education things. Jill has a copy of this that she can leave with you. We are making that available through the website of Polio Australia so that people and clinicians can have a look and see what might be going on with their client.

Miss Pickering : Can I butt in for a second?

Dr Cooper : Yes.

Miss Pickering : Margaret talked about the earlier ability to be assessed by neurologists and physios, but at that stage, in the 1950s and 1960s, they knew what polio was. They knew what the problems were. You now have several new generations of doctors, and all of them—in fact, a lot of community people—say: 'Polio? But that went out years ago!' I bite my tongue and I say, 'Yes, but not everyone who caught polio dropped dead that day.' And now we have the later problems, and we really struggle to find any treating health professional that (a) accepts that polio is a disease and (b) does not think that postpolio is not a real problem. They do not have a clue how to deal with it. So we get management problems which then exacerbate the recovery, I think. You have talked of assessment and early intervention. We often have to wait up to five years to get an accurate diagnosis, so you have already lost all that time when you are deteriorating faster because you do not understand that now you have to pace. You go from push, push, push to pace, pace, pace.

Dr Cooper : At the recent Parliamentary inquiry on polio led by John Tierney, there was a lot of evidence given from people who apparently recovered but started limping. They went off to their doctor and said, 'I've got back pain, I've got a limp, my leg's not as good as it was and I fall over a lot.' They got MS diagnoses, the doctor looked at the MRI to see if their brain was going off, they were told, 'Maybe you've got depression, maybe you've got conversion hysteria.' It takes some people five to six years to get properly diagnosed. So we want specialist expertise built into the NDIS.

Miss Pickering : Right from an early age, for instance, I had orthotics for my lower legs because I have a weak right leg and a hopeless left ankle, and in those days you had to pay for it yourself. As I became a teenager I threw them away; you get all self-conscious and you think, 'Oh dear, no-one's going to like me.' I was fortunate; I could still get around. I had a bit of a lurch and could not keep up quite as well but I managed all right. Then I got post-polio, and around 1985 I needed orthotics. I had to pay half of what the leg brace cost—I cannot remember the cost, but it was about $1,500, so I would have paid half that because there was not enough money to go around.

Currently, it is about $2,200 per full leg brace in the way of what SWEP will refund, but the real cost is about $3,500 to $4,000, so costs have gone up. It is often expensive because it is so particular to an individual. It is not an off-the-shelf thing. It is not like going to buy a dress and saying, 'Fantastic, I might just tighten the belt a bit'—or in my case, loosen it! It is such a fine skill. And you have to pay for it somehow because otherwise you cannot walk. You say, 'What happens when it breaks?' and they say, 'You have to get it repaired.' That might take two weeks, and that might take money, and in the meantime you cannot get to work because you cannot walk around the office—there is nothing to carry you.

I am trying to explain a little bit, personally, how critical it is to get these simple things. It is not like I saw myself at that stage as a disabled cripple needing massive support, but it did happen—it broke, and I could not get to the office. I had to ring the office and say, 'You probably haven't heard this excuse before but my caliper is broken.' Everything grinds to a halt. It is the same if you are in a wheelchair. Margaret was in a wheelchair and working, presumably.

Dr Cooper : Yes, and I paid for my wheelchairs.

Miss Pickering : And if it breaks you cannot go to work.

Dr Cooper : You have to have a spare. It costs money.

Miss Pickering : It is not a question of waiting seven months until the latest funding round is renewed, at which point everyone dives in at the first start.

The biggest concern our group represents in post-polio is the 65-year-old cut-off. If people get a diagnosis after 65 then they are not part of the NDIS. We have had the same diagnosis for years but it has not been considered so bad that we have to get diagnosed. I thought that was an interesting concept. Someone may tell us we have it, but they may also have told us when we were 50, and we do not need the aids until we get a bit older, as the levels drop. I am 66 now.

Dr Cooper : What we are saying is that our group, young and old, has paid its way in the community, right up until we started getting some funding in the nineties for personal care and equipment.

Part funding: we still always have to contribute. The wheelchair I have now cost $17,000, because we do not have an effective industry in wheelchairs. I had to pay $9,000 as my contribution last year. Then the roof had to be fixed; that was another $4,000. So my budget is blown for the next few years.

We feel that the age eligibility criteria should not apply to us. We were disabled many years ago and we are a finite, measurable cohort that needs assistance right through to the end of ageing. When I get demented you can take the chair away, but not before then.

That is one thing. The second thing is that you could just leave us with whatever funding is around for people with disabilities in various states—and we know how unequal the states are in disability expenditure—and give some top-up funding from the NDIS and let us, hopefully, be supported by states, or give us ageing funding and give us the equivalent disability funding so we can continue our lives as carers, partners et cetera and workers.

Miss Pickering : Can I say something?

Dr Cooper : Yes.

Miss Pickering : The downside with option 2 is that it is another level of application and it is another unknown quantity. If that is the only way it can be done, well, that is something, but really the preference is 1 or 3. It is an all or nothing. It also creates, basically, a second-class disability amongst disabled people.

Dr Cooper : Yes. There is a third option and that is—given what Rod said before—creating a different class for us that is expertly diagnosed, measurable, evidence based: what do these people actually need to continue community living? If you want the web link to this, Jill can give it to you or give you a copy. I am open to questions.

CHAIR: Thank you very much.

Senator SIEWERT: I think this question is to both groups. I clearly remember the evidence you gave to our committee at the inquiry on ageing with a disability, so assume that I already understand why you want to be in the NDIS, because we went through what the difference between the aged-care system and the disability system is. Instead of creating a new category, I presume your first option is just to get rid of the 65 cut-off, because I am thinking that if we create a category for postpolio then we create a category for ABI, stroke et cetera. It seems to me that we are unnecessarily complicating the process.

Dr Cooper : I agree with you if you get rid of the 65 years, because we are measureable. Rod's group and our group are measurable; we are definable. I understand that Maree Dyson was talking about the child disability allowance and having sat on one panel at some time. It did get broadened out way too much. You have to have clear guidelines. You would agree, wouldn't you, Rod? Yes? Good. It is possible. It needs expert panels or expert consultants, paid for by the clients, maybe.

Mr Harris : I would argue the second option, that of people accessing aged care. Whilst ever aged care can meet people's needs, that fits with what the community is intending. But where people need services that are over and above or different or not provided by aged care then the NDIS should step in. I can almost see Senator Fifield's mind turning over when he says, 'Oh, but we'll get this rush of people.' We had this discussion at a farewell of a senior Victorian disability worker. Victoria has had 'aged 65' out of the act since 2006. Victoria has not had a swathe of people over the age of 65 swamping the disability sector. If we go back to what Dr Dyson said: evidence. If you look at what has happened at DHS, the people who are accessing disability services who acquire a disability over the age of 65, or are over 65 when they first need a disability service, are the same groups who are getting it under 65. It is not Alzheimer's. It is not people who are experiencing the natural effects of ageing that complicate with disability. It is virtually the same groups. People over 65 have always had an entitlement to access aged care; whether they have a disability or not, that is an entitlement, so let us use that. But let us just say that people who need more than that, on an assessed needs basis, should be able to access the NDIS.

Senator BOYCE: Given what you have said about being the same cohort, can you provide us with a page of statistics or something?

Mr Harris : I can tell you what the situation is with motor neurone disease. Forty per cent of people with motor neurone disease are diagnosed at or over the age of 65. The needs of those people are generally—

Senator BOYCE: But you are saying that in the past seven years there has not been a change in the cohort of people. Is that in a report?

CHAIR: The Victorian government should be able to tell us that. We will follow up.

Mr Harris : The Department of Human Services will be able to demonstrate that very clearly.

Senator BOYCE: A shame they could not come and see us.

Senator SIEWERT: I know we are short of time but I have one more question around ABI and whether it is in or out. I know a couple of people in Perth who are very active in this area and they have really been at me: 'Make sure you follow up on ABI!' I also remember evidence from another inquiry, and yesterday as well.

CHAIR: And yesterday with ABI in Barwon.

Senator SIEWERT: We had the inquiry into the old CSTDA and people were presenting evidence to say they fell between and got pinged around from disabilities to health. How confident are you that ABI will be adequately addressed under the existing framework?

Mr Harris : My view is that if the system is based on needs then they will be adequately addressed. None of us wants a disability system based on diagnosis. It has got to be on unmet needs. This person has an unmet need; its cause is immaterial but it has created a disability, and that disability has been created by something that is not in the natural course of ageing. They should be entitled to be participants in the scheme.

Senator BOYCE: I am sorry—I was late coming back in. You may have covered this, but if the government continues to keep the '65' in there, some submitters have suggested that there should be a process whereby you could register at 50, or whatever—when you are diagnosed—and the aids would follow irrespective of when you needed them. Is this a possibility?

Dr Cooper : That is really fraught. I can only talk about the polio group today. People with polio hid their disabilities as much as they could. Disability was so stigmatising you never admitted to anybody else what you had. If somebody had told me at 20 that I should register a need for an electric wheelchair at 40, I would not have done it.

Senator BOYCE: You would not register the fact that you may have needs in the future; you would not have done it.

Dr Cooper : No, I would not have done it. I would not have known about it. There was an attempt to set up a register of children with disabilities through the children's hospital back in the sixties. It got nowhere because people would not register their children as disabled.

CHAIR: Nobody did.

Mr Harris : I think it also completely excludes any person who acquires a disability over the age of 65. It is interesting that the Productivity Commission's report on the accident scheme, which is running in parallel with this, has no age exclusions; so clearly you can be punched in the back of the head in the street at 66 and get NDIS but you cannot acquire, for example, motor neurone disease at 66 and be in the NDIS. I think we have a fundamental flaw here.

Senator BOYCE: In a system that was initially designed so that you would be assisted, irrespective of how your disability came about.

Ms Strugnell : Absolutely.

Dr Cooper : If I were transferred to aged care on my next birthday, I would go from 38 hours a week funding for direct personal care to 12, and that would mean I would not have enough hours to get out of bed in the morning seven days a week, and I would have no funding for my next electric chair. It is just as dramatic a situation as that.

Miss Pickering : I have forgotten what I was going to say, it was so important! What was the topic?

Senator BOYCE: We were talking about registering at 50 or whatever.

Miss Pickering : Yes, thank you—and I have only been here half an hour; I do not know how you are coping! A lot of problems for polios are that they cannot get an accurate diagnosis. They may have been experiencing symptoms; I started to experience symptoms at 55, but it was just put down to ageing or—

Mr Harris : Overuse syndrome.

Miss Pickering : Yes. Or we were told to go and exercise more, which simply makes it happen faster. So we do not even have the capacity for most people to get a correct diagnosis before they get to 65.

Senator FIFIELD: Senator Siewert and Senator Boyce have fundamentally covered the topics I wanted to address, but I did want to acknowledge the good work that our former Senate colleague John Tierney has done in raising the profile of post-polio syndrome. Post-polio syndrome is a very good opportunity for us to have a worked example which we can put to the agency and FaHCSIA when they present evidence to us in a few weeks time, because there is nothing quite like a concrete, real-life example to focus the minds of policy-makers. But also this is a particularly useful example because you acquire the condition early in life and it manifests later in life, so I think it is a very good one for us to pursue.

Mr Harris : We could also recall Harry Jenkins Senior, the former Speaker of the Parliament, who had motor neurone disease. So we have these examples around us, but we do not actually see them until an opportunity like this comes up to change people's lives.

Senator FIFIELD: Something that we have suggested to FaHCSIA that they do when they release the rules for the scheme is that they have a series of worked examples or cameos, for people with sensory impairment or with physical impairment. I think it would also be good if they could provide us with some worked examples of the interface between the aged-care system and the disability support system as they currently envisage the system operating. That, again, might help to shift some perceptions.

CHAIR: Thank you so much for all the information you have given us and continue to give to us. You are regular visitors in different ways to our committee. So we really do appreciate it. If there is anything you want to add, please be in contact with the committee secretary.

That concludes today's hearing. We will reconvene tomorrow in Hobart for the next round.

Committee adjourned at 16:08