Kelly Vincent – 5AA Interview on closing the gap around preventable deaths between people with and without intellectual disabilities

Andrew Reimer: Good to see you at the Star Theatre on Thursdays night.

Kelly Vincent Did you enjoy the show?

Andrew Reimer: I loved the show, Violet the Musical, absolutely loved it. Your show, you saw a different show there on the night too didn’t you?

Kelly Vincent: I did, I saw a Musical, Floors and Doors, also very good. Yeah, it was good to bump into you there.

Andrew Reimer: It was nice. Now, as far as issues are concerned this evening.

Kelly Vincent: Yes, I wanted to talk to you about a campaign that the Dignity Party has started ramping up, looking to close the gap around presentable deaths between people with and without intellectual disabilities. There’s been a very interesting study done out of New South Wales just recently that shows that as many as 38% of people with intellectual disability are arguably preventable, with the right treatment, compared to 17% preventable deaths in the general population. So the gap is huge, and is actually larger than the premature death gap between non-Aboriginal and Aboriginal Australians, which is of course a big issue. Although we have a lot more work to be done, much more aware of that gap compared to a very similar gap that exists between people with and without disabilities when it comes to deaths that may be preventable with the right treatment. So it’s a very big and concerning issue.

Andrew Reimer: Now, when it comes to making comparisons to the non-Aboriginal and Aboriginal deaths and then people with disabilities, Aboriginal deaths and the mortality rate are often attributed sadly to diet and alcohol and all the rest of it. But what’s, in the situation when it comes to the morbidity rate when it comes to people with disabilities, when it comes to similar factors along those sort of lines, are there correlations or is it completely different?

Kelly Vincent: I think there are some correlations, I mean we all have to look after our diet, we all have to look after our lifestyle, you might be living in supported residential facilities, it’s a very large sort of group home institutional kind of setting. They can be and a lot of issues with the quality of the food that’s provided, and also the opportunity when it comes to things like exercise and lifestyle change can be quite limited. And that’s something that we’re working on. But I think when it also comes to hospitals there are some issues, and I want to preface this by saying that I think hospital staff by and large do do a good job, and the best job that they can, but we do often, or sometimes I’ve heard this very similar story on Four Corners, I think it was, just a couple of weeks ago where people with disabilities can often have certain behaviours or symptoms attributed to disability, and therefore not be properly investigated or checked out medically in a way that someone without a visible disability might be. So for example as someone who has an exacerbation in aggressive behaviours and they have a history of that because of their disability and that’s their way of communicating, that might be more easily dismissed, and they might not get the same medical treatment that someone like you or I might get if we have a sudden change in our behaviour. So that can, I think, lead to a lack of willingness for the person to be taken seriously, and also in some cases early discharge because it’s a thing that the person want’s or change in behaviour is purely due to their disability and therefore they just need to go home and live out the rest of their lives.

Andrew Reimer: What about, wouldn’t there be people advocating on behalf of the person with the disability?

Kelly Vincent: Look there certainly are. Often there is a person, whether it be a family member or a support person, with that person. But just to paint a very quick picture, I have heard of stories where for example a person living in a supported residential facility like the ones I’ve just mentioned, has a change in their behaviour and it’s actually the people that are living in that home that takes them to, or supporting them in that home, they’re having an alteration of their behaviours or so-called behaviours, we need to up the dose of their specific medication to stop those behaviours, basically so that they are easier to support in the home. So while I think a lot of support does happen for the people they support at heart, unfortunately that’s not always the case, and we do look for a short-term fix as opposed to holistically supporting the person. And, of course also when it comes to parents or other family members – well they can’t be there all the time, and nor should they have to be. And that’s why the Dignity party has been lobbying very hard for things like the Centre for Disability health which I think we’ve discussed before, Andrew. It’s a specialist medical facility where people with these types of needs can go to be holistically checked out and they have doctors that specialise in treating people with certain behavioural issues. So it’s a very important service and one that we cannot afford to lose and without it people are at risk of going without proper medical treatment essentially for the rest of their lives and that is a human right that we cannot afford not to meet.

Andrew Reimer: When it comes to diet and institutions wouldn’t it be clinicians or dieticians overseeing the diet of the person who was there to ensure that they’re eating the right foods and doing, what it is they’re meant to be doing?

Kelly Vincent: That is a very interesting question. What happens in policy is quite different to what happens on the ground. Maurice Corcoran, the current Community Visitor whose job it is to go around and visit people living in these types of homes and assess the quality of the support that’s being provided could tell you many stories. He has shared with me situations where there might be a meal plan on the wall available for people to read speaking to the residents of the homes and Maurice is saying to them “Oh how is the roast that you have on a Tuesday?” And they say, “What are you talking about? We’ve never had a roast” and so you open up the fridge and according to Maurice’s story, which I tend to trust, is row after row of fritz and white bread. None of us would expect to eat that way. What happens in policy is quite different to what happens in practice and that’s why the Dignity Party has been working with some people working in the disability and health scene as well as people who are running these types of businesses to see what can change in culture around them to actually involve people, the residents in these homes in the provision of food, in the shopping which gives them an opportunity of exercise as well. There are many gains I think to be made but unfortunately it’s one of those issues where thinking in the short-term might save money and time at that time but if it leads to further health issues down the track we’re not actually saving money or time. We’re also working with the Chief Nurse in making sure that we get some changes in policy and in hospitals as well to make sure that people with disabilities are properly medically checked out, that they have the right to have a support person there including a support worker if they need to be assisted to shower. That’s another issue, many people with disabilities are going without showers days at a time because of their complex physical support need and the hospital staff aren’t necessarily trained to provide that support. We hear of people going days in hospital without a shower and there are many, many issues to work on when it comes to making the health space more accessible to people with disabilities and many gains to be made by doing it so I’m very happy to talk about this issue further as we advance this. This is not something that any person would be expected to tolerate.

Andrew Reimer: Somebody sent in an SMS and that says, “What is this politician going to do about power issues and prices?” When it comes to the Dignity Party what is your attitude towards what is going on when it comes to power issues and prices here in South Australia? How much of a difference can you make as an MLC and your Party make to this particular issue as well?

Kelly Vincent: Well look this is an issue that belongs to all of us no matter what party we come from or what side of politics, we all need to be working to make sure that we have reliable power in this state. I think the demonization of renewables has been rather unhelpful, I think we do need a mixture to provide reliable power. So this is something that we have to consider particularly in the wake of the report that has come out because there was a number of recommendations made around supplying reliable power again to people with disabilities or people who may be particularly susceptible in those times and that’s certainly a focus for us. Not that we’re not interested in the general power supply but … that is a voice that is often forgotten that we can add rather than just doubling up on the debate that is already occurring. And we need to remember that while unreliable power supply is not good for anyone and particularly not good for business, there are people particularly with disabilities and health conditions that are particularly vulnerable in those times because we might rely on electronic equipment to literally stay alive. So I think the reason I provide a different focus is that rather than just doubling up on the debate and having more he said, she said, that is a voice that I think we can add that provides a different perspective and reminds some of the other major parties about the issues that they often forget as well

Andrew Reimer: Andrew from St Peters has a question –

Caller Andrew: More of a comment, you raise very important issues especially around the health component.

Andrew Reimer: Kelly, thank you very much for coming on the program and good luck with your campaign to close the gap as well.