KERRY O’KANE: Under the old regime, care was very fragmented. So I had to go and advocate on behalf of my son to 10, 15 fifteen different agencies and get little pockets of money from here, there and everywhere. And I had to cobble it all together to get a working life for him—and us.
You know, you had to beg—absolutely beg on your knees—for every little bit that you got.
CAMILLE MERCEP: Welcome to Pomegranate, a CPD podcast from the Royal Australasian College of Physicians.
In this episode we look at the National Disability Insurance Scheme, designed to provide better care for the 460,000 Australians who have significant and permanent disability.
The NDIS supports individuals in making personalised therapy goals, accessing appropriate care and participating in mainstream life. Since 2013 the scheme has had a staged launch across parts of Australia. This month, the NDIS will start rolling out across New South Wales and Victoria and will have complete coverage by 2019.
Today, rehab physician Dr Elizabeth Thompson shares the hopes her Sydney clients have for the personal funding. Kerry O’Kane talks of her relief having found a secure future of care for her son when the NDIS reached the ACT. And Dr Katherine Langdon describes the impact the scheme has had for paediatric therapy models in Perth.
But first, to explain how the NDIS differs from past disability services, Dr Robyn Wallace of Calvary Hospital in Hobart.
ROBYN WALLACE: From what I've seen in Tasmania, it’s revolutionised in a very positive manner the lives of people with intellectual disability and developmental disability. The general principal of this service, the NDIS, is to provide reasonable and necessary supports for people with disability—so that they can first of all make their own goals, set them out themselves, with their family perhaps, and to be included in the community as fully participating citizens to the extent of their ability.
Previously, disability service providers were block-funded. It's like if you went to Coles and the lady at the checkout said, "Well, here's your groceries for the week." And I say, "Well, I don’t like pumpkin.” But too bad, it's given to you. And families, on behalf of their sons and daughters, were too frightened to say anything if they weren't happy in case they were kicked out. Whereas in this model, using that same analogy, I'm going and I'm doing my own shopping.
The whole revolution of this service is that it is person-centred. The money is with the individual, the participant, and the service providers are paid like a private practice—a fee for service.
So this in Tasmania is leading to great changes with service providers becoming a lot smarter business-wise, a lot snappier, and there's now competition. And I think the quality has gone up significantly.
ELIZABETH THOMPSON: One of my clients is very keen to purchase a new wheelchair with certain colouring and modifications. But having these modifications that are important for social inclusion for this person is something that wouldn’t necessarily have been funded under the old scheme. The NDIS isn't about funding all the bells and whistles, but at the end of the day sometimes those bells and whistles might actually improve and enhance social inclusion and the person's ability to function, and that can be seen as vitally important.
I'm Liz Thompson; I'm a rehab physician looking a lot of the time at clients with intellectual disability and complex care needs over a long period of time. For those clients, quite often we need to consider whole-of-life aspects such as their footwear through to their continence aids, including helmets for epilepsy—those kind of things.
What we don’t often do well is look at social inclusion opportunities and the ability to interact more meaningfully with society. Many of my clients are exceedingly excited about the opportunity NDIS presents for further funding of speech therapy, for instance. Accessing speech pathology services under our current model of funding can be quite difficult. Often people are restricted to an enhanced primary care plan which offers 5 allied health sessions, and most of my patients who have not been on ADHC books before face up to a 2-year waiting list.
Speech therapy is often considered an acute concern if someone has a swallow disorder in order to protect their chest. And then any further aspect of speech pathology is often downgraded and not classed as important, especially in outpatient settings. As communication is such a vital part of being a human, we often forget for someone who is severely disabled that they might be able to learn new techniques or respond to new technology in a good way. Thus the opportunity to pay for therapy with NDIS support funds is something they are so keen for—it's very inspiring to see this plan for further self-development and hope for further improvement in their skills even when they’re of an older age.
The decision behind what gets accepted and what doesn’t get accepted, and what's able to be appealed under the NDIS funding appears to be largely based on the assessor that’s present during the assessment period. So there have been stories of clients with similar care needs coming out with quite different care plans and funding structures. So a number of my clients have concerns that they might not have the right ability to advocate for themselves. And so that's certainly something we can help pre-plan by assisting them with consideration of what they might need to improve their functional outcome such as podiatry care, appropriate footwear et cetera, because it increases their opportunities to have more social inclusion.
In terms of rehab medicine's approach to our patients, I don’t think there's any urgency to change the way we structure our reports. However, there have been some reports from Newcastle that increased transparency in medical reports is required, such as using more basic language, or defining why certain measures are required.
KERRY O’KANE: So I'm Kerry O'Kane; I live in Canberra. I'm the mother of three children, our middle child is Callum Bradley and he has Angelman Syndrome. And that causes a lot of various disabilities, the main one being complete absence of speech. Intellectual disability—he can walk but not very well; he has a balance disorder. He has epilepsy, he has eating difficulties. But I think a lot of people have in their mind the image of a disabled person is a frail person, whereas Callum is extremely strong. So the caring duties are a little bit more strenuous because we’re trying to change nappies and get him dressed and feed him, but he has the strength of a 25-year-old man.
Something that marks the syndrome is that they’re very hyperactive and they’re in constant movement and motion, so that you have to be aware of when they’re awake—which is most of the time because they don't sleep very much. You have to be aware of where they are and what they’re doing.
And we had in our house, we had gates all through the house. So we had a gate into the kitchen because he'd just wander in when he got older and turn the hotplates on and then just fiddle with the dials and walk out, and all the hotplates would be on, or he could burn himself. So when our daughter was toilet training, for me to get her to the toilet involved us running through three locked gates.
And you know he's quite ingenious; he'll use what means he's got, which are very limited, to communicate. He used to do bizarre things with TVs. So he loved TVs, but he didn’t know how to change the channel. And he knew that if he threw a transistor radio on the floor the station would change. So he applied that logic to a TV and if he didn’t like what was on TV he would throw it on the floor. So we just went through a bad patch there where he smashed about 2 or 3 or 4 TVs.
Yes, so my husband's in his mid-60s and I'm nearly 60, and we wanted to have Callum settled in his own place because his whole life and his regime was dependent on the continuing health of my husband and I. We'd had an incident about 5 years ago where my husband had to have reconstructive shoulder surgery, and immediately that day Callum had to go into respite and had to stay there for 6 months and it was an awful experience. Just the suddenness and the upheaval for him was unsatisfactory.
What the NDIS provided was the money to allow him to have carers overnight. But at the other end, it was reasonably difficult, or required argument and some advocacy, that he needed one-on-one care, because one-on-one care, as you can appreciate, is extremely expensive.
And unfortunately something that exists in the previous scheme still holds—which is that in order to get the funding that you require for your child, sometimes you have to paint quite a bleak picture and that always tears at the hearts of parents because you feel like you’re betraying the person you love. Because you know them to be a loving, generous, beautiful person, but you have to say, “Well yes, here's an incident report where our son scratched the corneas of another boy and he had to be taken to hospital—but our son was only trying to communicate.” But you pull these terrible things out, these bad examples, in order to justify why, for instance, you need expensive one-on-one care to supervise and assist your child.
The first couple of times we had respite we just went to bed and slept for ten, twelve hours. We just slept. The closest analogy I can think of in those years was that type of anticipation and fight-or-flight that soldiers experience, where you’d never actually sleep—you’re sort of waiting for an event. So we didn’t sleep properly for probably 10 years I'd say. Maybe longer, maybe 20 years.
And sometimes, I had a rule of thumb, that if I had less than 3 hours sleep I used my sick leave and didn’t go to work. But apart from that I held on to my job with my fingers and toes. And in the early days, you could use respite to go to a knitting class, or something like that, but you couldn't use it to go to work. So someone had made a policy judgement that parents of disabled children shouldn’t work—they should give up their lives, be the martyr model. So I didn’t comply with the martyr model.
And under the old regime, care was very fragmented. So I had to go and advocate on behalf of my son to 10, 15 fifteen different agencies and get little pockets of money from here, there and everywhere. And I had to cobble it all together to get a working life for him—and us. And so I was hard-bitten, cynical, very jaded, but I did understand from the outset that the NDIS was a national initiative and you immediately were struck by the fairness of that. And I am very positive about the scheme, it was a great result and it's going to be great for a lot of people.
KATHERINE LANGDON: I'm Dr Katherine Langdon, paediatrician and rehab consultant working at Princess Margaret Hospital.
So in Western Australia we have been involved with the NDIS for about two years and it’s been interesting because those areas have now really developed as hubs with really quite innovative programs—and a very different model of care of therapy. You can really feel that the wheels of motion are really starting to get going now.
At Princess Margaret we would certainly like to provide a more tertiary level therapy using blocks of therapy as a more intensive rehabilitation. In addition to that, though, I think there's also a need for a long-term set of goals—the more community-based therapy that can be delivered by parents in their own home so that activities of daily living, communication, mobility are all kind of moving along in the background. Because I think sometimes the intensive bursts, you know, the children have to be actively engaged in the therapy, if they’re just passively being taken along to the therapy session but don’t really know what the whole point of it is, the benefits are not likely to be as significant.
So I think the two therapy deliveries are quite differently organised, but I can see that something of that sort will be offered more frequently by the NDIS. But it is a model that definitely works and it does give kids an opportunity to get an intensity and frequency of therapy that gives them really good insight in what they may be capable of.
One of the processes that we go through is to find out where the family live, and in Perth of course that means that they may or may not fall into an NDIS catchment area, or they may be in one of the areas still being provided by block-funded community therapy providers. And they also have the choice of Better Start-funded private practitioners. So there is a lot of complexity at that first point.
On that, some of the parents are working out that for them taking over the administration of their child's NDIS funding works out better for the child as they reduce the administration cost that is actually subtracted from their child's package. One mother said it probably gives her child twice as much therapy. So, you know, that is obviously a disadvantage of the service and system because it's quite complex and some parents are better able to manage that than others.
In Western Australia, in particular, we have the rural and remote children I'm not sure are receiving the benefits of being near these NDIS hubs. But in addition to that we know that there's a lot of families that are beyond the scope of engaging in services. And it can also be just very young mothers, or English is a second language, or unemployment, or loss of housing. So there's a whole lot of social issues behind that as well which really will need to be supported for some of these families.
I think it's a happy chance event really, that both health's approach to early intervention and the NDIS are kind of at a watershed period where early diagnosis and early intervention really is identified as crucial. And beginning at a very early age—not kind of 16 months but in the first year of life, as soon as possible, as soon as there's any kind of sign that a developmental issue or problem may eventuate.
As a physician seeing children from zero up to 16, our role changed a little bit from sort of “advocate for early intervention” to really understanding a child's function in that school age latency period. And then as kids become adolescents, we really have a big role getting into the adult sector. And I think hopefully the NDIS will provide a bit more stability, and help particularly at the adolescent end of the equation because I think that's when the families really feel as if the bottom falls out of the system for them at present. And when the school drops away and the paediatric hospitals drop away, that's when they’re really left with the full burden, or the full realisation, of providing for their child's needs.
ROBYN WALLACE: My name is Robyn Wallace; I'm a physician in internal medicine.
So in terms of considering who is eligible for the National Disability Insurance Scheme, first of all: if you’re already in disability services and receiving a day service or supported employment, that will automatically make you eligible.
There is on the NDIS website a list of people who are very likely to be eligible, and in that is a list of syndromes of intellectual disability. And this has implications for the health sector, because part of this is about learning about disability values, not getting befuddled. Fantastic physicians, great training, sometimes just can't see through the disability.
Traditionally, at least with adults with intellectual disability, the healthcare has been suboptimal. I must admit that. There's the three or four times more adverse events in the hospital setting compared to their peers without disability, more likely to be given palliative care for a treatable condition, and a life expectancy of up to 20 years younger than their peers without disability.
And these adverse events are not due to the disability. The example I have is a 50-year-old with intellectual disability and iron deficiency anaemia. Now the standard practice for any person at 50 with iron deficiency anaemia—you take a history of sources of blood loss. It might be more difficult to obtain that accurate history in a person with intellectual disability, but at the age of 50 you’re worried enough to think, “OK, I think we need to go to upper and lower endoscopies,” but instead the person with disability is just given iron and left at that.
Prior to the NDIS some patients have been very vulnerable in terms of their disability support system; they’ve been very vulnerable with regard to their health. And I have a patient who’s 23, he's got a serious disability. And he lives in a rural area, and requires 24-hour care. He requires assistance for all of his daily living.
But in this case the gentleman had a percutaneous gastroenterostomy tube, so he had PEG feeding. And through his NDIS plan he was able to access a nurse and that nurse was able to write out a plan for management of his PEG, and a crisis plan—what happens if the PEG tube breaks?
She was able to write out a plan for the epilepsy, and for management of his seating position, for his skincare, passive stretching. Some of these other contributions had been provided by doctors. But she was able to draw up a program to help support workers, and with that safety in place he's now—instead of perhaps going to the emergency department six or seven times a year—we haven't had an admission for at least nine months.
CAMILLE MERCEP: Robyn Wallace, Elizabeth Thompson and Katherine Langdon are members of an RACP working party aiming to support the rollout of the NDIS and improve collaboration between Health and Disability services. Many thanks to them for their time, and to Kerry O’Kane for sharing her personal experience. The views expressed are their own, and may not represent those of the Royal Australasian College of Physicians.
To learn more about the National Disability Insurance Scheme and its availability in your area, visit the Pomegranate website at racp.edu.au/pomcast. And please join in the conversation using the hashtag RACPpod, or email email@example.com.
Pomegranate comes to you from the College’s Learning Support Unit. The program is presented by Camille Mercep and this episode was produced by Mic Cavazzini, with assistance from Diana Darmody.
We hope you can join again us next month.