Recording of webinar for providers and workers: New resources from the NDIS Commission - Transcript

SAMANTHA TAYLOR:  Good afternoon, everyone, and thank you so much for joining us this afternoon to talk about a very important topic.  This is one of a series of webinars that the Commission will be launching overcoming months, designed to assist in educating the sector around the findings of a Scoping Review that we under took in 2019 under the auspices of Dr Julian Trollor, who will be joining us in conversation today with our Senior Practitioner D Jeff Chan.

 

Before we kick off, I want to acknowledge that we are all meeting on Aboriginal land ‑ always was, always will be.  I'm meeting with you from the lands of the Gadigal people of the Eora Nation and I want to pay my respects to Elders past, present and First Nations colleagues who are joining us today.  Thank you.

 

I just want to take you through the format and some housekeeping before we kick off. We've got a Q&A function on Zoom which, by now, I think the whole world is used to using and we would encourage you to use that when the time comes.  There is quite a rich opportunity for you to ask questions of all our presenters today. We are recording this webinar and it will be available on our website for you to review again if there are things that you want to revisit or to share with your colleagues, which we would strongly encourage you to do. As you can see, we've got live captioning to assist those that require that.

 

The format today will be a brief introduction from me.  I'm Samantha Taylor.  I'm the Acting NDIS Quality and Safeguards Commissioner.  Followed by my introduction will be an in‑conversation half an hour with Julian Trollor and with Jeff Chan and then I'll do a bit of a wrap‑up and we have a bit of a video treat for you this afternoon so I hope you enjoy that.

 

When the Commission first commenced ‑ we commenced in a staged way, as many of you know, starting in South Australia and New South Wales in middle of 2018, but very early on we recognised there was a need to draw on the observations that regulators who had come before us in some jurisdictions had collected around the most serious issues affecting people with disability, which are the factors that contribute to premature and avoidable death.  The Scoping Review that we commissioned Julian to undertake for us was designed to look into the evidence that had been collected in Victoria, Queensland and in New South Wales about those factors and to provide us with a baseline to assist us in formulating action and guidance for the sector as a new regulator informed by things that had been observed before us.

 

Julian is a very well‑renowned doctor and researcher at the University of New South Wales Faculty of Medicine and Health and leads national initiatives on health care for people with intellectual and development disability.  We were privileged to have him undertake this work on our behalf and to bring such significant expertise over many years in this sector and around particularly the interface between disability supports and the health sector and the impacts on that intersection not working well particularly for people with intellectual disability and developmental disability.

 

Jeffrey Chan is our Senior Practitioner and has been since the beginning and he's worked in disability services for decades and has led some of the most significant roles across the country in addressing issues of behaviour support and the issues which contribute to significant aberrations around people's rights ‑ people with disability's rights, and that is in the area of restrictive practice, and he has striven throughout his career to work to eliminate in the lead‑up to elimination, which is all our aspirations, to reduce the use and prevalence of those practices.

 

Without further ado, I'm going to hand to Jeffrey and to Julian to take you through the Scoping Review, the things we've done over the course of the last few months, and, most importantly, to give you some tips about the kinds of things that we think are important for you to take into consideration when you're providing supports to avoid these most serious risks to people with disability. Over to you, Jeffrey and Julian.

 

DR JEFF CHAN:  Thank you so much, Sam. Thank you for the very kind introduction.  As you have said, Sam, it's such a privilege to have Julian in this conversation that we're going to have and Julian, it's good to see you again.

 

PROF. JULIAN TROLLOR:  And you, Jeffrey.  It's a pleasure to be with you today.

 

DR JEFF CHAN:  Thank you.  Julian, the report of the UNSW Scoping Review on the contributions and causes of specific death, as you are very aware, has generated a lot of interest not just within the Commission but also outside the Commission and in the sector.  The report has reiterated and highlighted once again the health inequalities experienced by people with disability and it also goes to the work that you currently are involved in in examining the health inequalities of people with disability. So it's a very significant report for the Commission and also for the sector and the report in itself, Julian, has actually propelled the Commission into action.  We would like to see also in the sector a sense of urgency to respond to your report.  Julian, if you can spare some time to ‑ your report is available on our website, but I think it would be a good idea to perhaps elaborate on some of the key findings of your report to our audience.  Thanks, Julian.

 

PROF. JULIAN TROLLOR:  Thank you.  Before I start, I would just like to acknowledge the Bedegal people, who are the traditional custodians of the land here at UNSW Sydney, and I pay my respect to their Elders past and present and acknowledge people with disability who may be joining us today and those who support them who are absolutely pivotal to the topic that we are discussing.  I would also just like to acknowledge the funders.  I receive generous funding from New South Wales Health and from Commonwealth sources such as the NHMRC, and without that funding, the work and the capacity in research would be absent in my department.  So I'm really appreciative of that funding.

 

Jeff, as you know, I think what we have to first understand is that mortality rates and particularly preventable mortality is a hallmark of the quality and effectiveness of health care for people.  So it's a sentinel indicator.  So when we talk about the Scoping Review, we have to think of it as being a body of work that fits within broader work that's really exposed premature deaths and potentially avoidable deaths for people with disability in Australia  and that emerging work is what is key to the conversation here.

 

Earlier on, our research demonstrated very high rates of death in people with intellectual disability compared to the general population and the majority of the causes of death were things that are quite similar to the general population ‑ diseases of the respiratory system, circulatory systems, cancers, diseases of the nervous system and injuries and poisonings ‑ but, importantly, in the subsequent paper we described the proportion of potentially avoidable deaths which was double that of the generation and these deaths were dominated by things we can do things about ‑ cardiovascular diseases, infections, cancers, respiratory deaths.

 

So when we came to the Scoping Review, we were fortunate to be able to work with the Commission on this body of work.  We saw that the overwhelming majority of deaths in the Scoping Review were of people with intellectual disability and among the people who died, things like mental health concerns were very common, physical health concerns such as dental problems, epilepsy, gastrointestinal disorders and urinary problems, and a considerable portion of those people experienced issues that impacted how and what they ate.  Many had communication problems.  Many had mobility problems.  We also saw that there were very high rates of medicines used, particularly multiple different medications used at one time, and that vaccination rates were relatively low for things that would help prevent death, such as pneumococcal vaccinations, influenza vaccinations.

 

We also saw a gap around lifestyle‑related risks that weren't being addressed during the person's life.  We saw that the causes of death in the Scoping Review were very similar to the previous work, so respiratory diseases, nervous system, circulatory systems, cancers.  Subsequently what we have done is published work that examines the factors associated with increased death from our New South Wales data set.  These give important signals of health related factors that might help us understand the drivers of death.  While some things are really evident, advancing, age, cancer, were naturally associated with higher risk of death, other things to emerge in that next bit of work that we did were around the high risk of death in people with down syndrome, in those with cerebral palsy, in those with mental health conditions.  The risk of death was increased over four times.  In those with chronic and long term conditions like kidney failure, kidney disease, epilepsy and cardiovascular diseases.

 

Just a few weeks ago, we published a new manuscript which compared the New South Wales's Ombudsman's cause of death from their in depth reviews to standard ABS death coding.  What we saw there was really interesting.  We saw that the underlying cause of death codes differed in nearly half of all deaths, so that this suggests greater clarity emerged when the detailed deaths review was undertaken, rather than relying on standardised death certificates.  We saw certain diagnosis seemed spurious in the standard coding.  More light was shed on those causes of death from the Ombudsman reviews, and in the detailed death reviews also reduced cases where no clear death had emerged in the standard coding.  This suggests these detailed death reviews add something to our understanding of deaths.  I think that's where we are today.  We have this sentinel indicator and the urgent need for action, particularly around preventive health care.

 

DR JEFF CHAN:  Thanks, Julian.  As I mentioned, the data you presented are very sobering and in my personal view, if it doesn't lead anyone to action, that's a great concern, and the report has generated a lot of interest within the Commission and we immediately took some actions.  We crafted our actions in terms of what can we do immediately and consistent with the NDIS quality and safeguards function of educating and informing the sector of lifting the capability of the sector.  So the immediate piece of work which our audience are probably aware of is we have developed a series of practice alert, and the practice alerts point to all the topics you have mentioned to as the contributors of disability death ‑ you know, lifestyle, dysphagia, epilepsy, oral hygiene, polypharmacy.  That is what we call our first group of practice alerts and more will be coming out.  We also developed a ‑ provided an administered grant led by the Minister for Technology in a very large consortia called co‑creating safe and enjoyable meals, just to address the issues of meal time and swallowing difficulties, and we further also took further action in developing a series of e‑learning modules.  One that we'll be launching today is supporting effective communication.  Your report highlighted a lot of people with disabilities have communication issues and they are not visible in their health care.  Also there will be another e‑learning module on meal times also that you are doing.  As you are also aware, we are working with you and the health advisory group in looking into further probing into the death data analysis.  So the work that we are very interested in the Commission is, in fact, trying to find out some solutions and what can we do immediately to address some of the health inequalities that your report have shone the spotlight on.  I am wondering for our audience today, Julian, what would be your advice that you would give on your findings on one or two things that they, as providers, can take immediate actions to address the health inequalities?

 

PROF. JULIAN TROLLOR:  Thanks, Jeff.  Look, I am really positive about the future.  I am obviously painfully aware of how our current systems and health supports are not working for people with disability but I am really excited by the increased efforts of providers, and I think many providers are really engaging to build a stronger focus on health into their work.  It's really heartening also to see things accelerating at a state and Commonwealth level.  The leadership of the Commonwealth Department of Health has been pretty good here with the recent launch of the National Roadmap For Improving the Health of People With Intellectual Disability.  The NDIS Quality and Safeguards Commission and the Australian Commission on Safety and Quality Health Care are absolutely key to lead the sector through the changes that are required.  I do see further enablers are quite critical.  A National Centre of Excellence has been proposed in intellectual disability health and has been committed to verbally by the Minister for Health at the Commonwealth level and the current government is considering a national disability data asset which will really enable us to be much more proactive in analysing data related to health outcomes for people with disability.  So some of the critical building blocks.

 

Much of the work, of course, is being conducted and promoted by the Commission, as you said, and I see the practice standards and the quality indicators and the emerging guidance that you are giving, particularly targeted around the findings from the scoping report, are really timely and they're very well pitched.  I also think that the NDIS work force capability framework is really important because it sets the expectations around the attitudes and the skills and the knowledge of workers who are funded to provide the supports under NDIS.  Really, that document does acknowledge the centrality of health and wellbeing to all of us but particularly for people with disability.

 

A random fact: there's 215 mentions of health and 26 mentions of wellbeing in that framework, and only 55 mentions of disability.  It's an incredible feast of appropriate responses to health care for the NDIS work force.  I think for providers, I would like to suggest thinking locally.  We have this emerging evidence about what's known about health outcomes and so we need to think critically: how are the risk factors being identified here for those poor outcomes related to the people you're supporting? And what can you do at that individual and personalised level about it? At an organisational level, what are you doing to equip your work force in this area? What culture is there in your work force around the lifestyle‑related risks? Where I've seen this done really well, there's been a whole‑of‑organisation vision for preventive health care and lifestyle engagement that reduces risk factors.  What are you doing around access to health supports? What could you do better in supporting that person to access good health care? And what are the links, emerging links with primary health networks and their providers and with local health districts because, of course, they provide the acute care.

 

At a capacity‑building level, I think partnering in research is really helpful.  It has been a privilege to partner with the Quality and Safeguards Commission in our next round of research, which is really focused on preventive health care.  So I really look forward to doing that work with you. I think innovation in disability health care is really needed.  We lack the models that are sophisticated enough to connect the health and disability and other relevant sectors, so I think we need some innovation there. I think within the disability sector, the practice is well ahead of that in the health sector.  There are very few health providers, particularly doctors and nurses, who know how to do this well, who know how to apply reasonable adjustments in their practice, and this is because they have lacked the training in their basic qualifications, and so I think there's a golden opportunity for disability professionals to model really good practice and, if they see it not happening, to draw that gently to the person's attention but assertively, and provide the information about how to do that well for the person that you're supporting in access to health care.  So I think they are some of the things that I can think of at a systems level and at an individual level that really will help this.

 

DR JEFF CHAN:  Thanks, Julian.  That's a lot for providers to take on because the examples that you have mentioned are things that are quite practical, things we can do immediately, things we can take on board at a systems level, and that will speak to, for example, the level of senior management, the CEO and, I dare say, at the board level and how they might invest in better health care in supporting their staff to have supports such as those with better health care management. I have heard of some of the work you have done, Julian, and particularly I am interested in lifestyle.  So lifestyle risk because it's one of the things that we have found in your report, and we are keen for you to take some time perhaps to elaborate on one of your examples of how you partner with different stakeholders and what you are doing addressing lifestyle risk.

 

PROF. JULIAN TROLLOR:  Thank you.  A couple of years ago we ran a project that did a couple of things.  It did assembled resources that helped health professionals have a very proactive response to the health needs of people with disability, particularly around preventive health care and cardio metabolic risk factors and so that algorithm was developed both for children and younger people and for adults with accompanying resources for people with disability and those who support them, and those resources are really available for use by the sector and by people with disability on our website, and can be highlighted to the doctors and primary health care providers that are providing care to a person with disability.  There are clickable links then to other resources about how to do this well and we also produced a series of podcasts and e learning to support this.  The e‑learning is embedded within our own e‑learning system, which is available to providers, but that is a privatised system now and it's a fee for service, and the podcast we produced particularly focused ‑ a series of eight podcasts ‑ around prescribing from multiple perspectives ‑ from the perspectives of people with disability and from the perspectives of professionals who work in the area.  Those podcasts are quite helpful to reflect on this issue of polypharmacy and concern about potential overprescribing or poorly tailored prescribing.

 

We know that people with intellectual disability experience two problems: one is very high rates of mental health conditions, which to some extent drive the use of psychotropic medications, but one is the use of psychotropic medications for the purposes of behaviours and behaviours of concern, and we do know that often prescribing is necessary but often too it's poorly targeted and not reviewed adequately and not revised adequately.  So I would like to encourage people to be thinking about how to support people to access things like medicines reviews that can be done by pharmacists and by treating professionals, and there are some resources I know that the Commission is working on to help support better practice in that area. But I would also just encourage people at this stage to think about the sort of gaps that were in the Scoping Review around access to health checks.  There are really good evidence‑based tools that actually helps detect and better manage problems in people with intellectual disability and basic things like addressing the shortfall in vaccines is an important step.  So I think there are some of the issues.

 

In primary care, we know that prescribing is dominated by the psychotropic prescribing but we also know that people with intellectual disability lack the appropriate prescribing for preventive health care.  We have seen in data that was analysed from general practice that there are lower rates of prescribing for things like blood pressure management, cholesterol management, diabetes, and these are important things in preventing later cardiovascular disease and poor outcomes from that.  So we need to think in a sophisticated way about the whole person and about the long term and prevention.  So I think they're some of the things that can be of support.

 

DR JEFF CHAN:  Terrific.  Thanks, Julian.  Just on some of the examples you gave about podcasts, are these podcasts available that we can have hyperlinks and share with the providers?

 

PROF. JULIAN TROLLOR:  Indeed.  They're all available through the website that we have at the university.  So if you just simply Google '3DN UNSW', you will find our website and all the resources are assembled there.  We have a comprehensive resource summary, in fact, that's available.  Perhaps that is a link that I could provide.

 

DR JEFF CHAN:  Terrific.  We will make sure we link to 3DN at the university website.  Some of the things you mentioned about vaccination, particularly now with COVID‑19, how we support participants to access vaccination if they wish to.  These are some of the more simple things technically that we can do as providers.  I want to just very quickly touch upon the point you made on innovation and I am keen to hear ‑ share your ideas of how providers perhaps can look into innovating better health care and whether it's through partnerships with other universities like yourselves.  Is there some advice you could give to our listeners today?

 

PROF. JULIAN TROLLOR:  Thank you.  I think a key approach is really one that is in partnership with people with disability.  Firstly, we need to understand the difficulties people have in navigating health care and its intersection with disability support, and, secondly, I think it's important for particularly those providers who are able to, to consider whether research partnerships might be possible with health care providers and academics that may help develop ‑ scope and develop better models, and better use of technology for the purposes of this innovation.  We lack awareness about what works.  We lack awareness about the best service models.  We need to think internationally, how can we create the right connections to find out what's happening and working well internationally, and then we need to co‑design the approaches here.  An example of how that's working for us: we have recently started a project related to palliative care.

 

Our starting point is to understand the experiences of people with disability as they access palliative care, both from the point of view of the person with disability, those who support them, health and other relevant professionals in the disability sector.  We are then looking at our data linkage to establish how people with disability use palliative and we're then consulting widely on how to develop a better model of palliative care service provision that meets the needs of people with intellectual disability.  These are some of the ways in which that innovation occurs but it requires really good partnership between people with disability, those who support them, agencies such as yourselves, providers of the care, and academics and clinicians. It's hard to assembled but it's possible.

 

DR JEFF CHAN:  Thanks, Julian.  In relation ‑ it's critical also about the culture, the work force culture of an organisation.  I am pleased that you have reiterated all about projects being co designed and co produced with people with disability and that's how the Commission ‑ we have been undertaking all our projects with co‑design with people with disability, so that's a very important point that you make there.  It needs to be part of an inclusive research and an inclusive project development.  Thank you so much, Julian.  They're very insightful comments and, in addition to just being insightful, there are some really good, practical take‑aways for providers.  So thank you so much.  I'll turn to Sam as perhaps there might be questions from providers.  Over to you, Sam.

 

SAMANTHA TAYLOR:  Thank you, Julian, and thanks, Jeff.  That was really, really interesting and I think often these really complex pieces of research can feel very difficult to navigate and it's really important that we're able to translate those into practical steps for providers.  I was talking to someone the other day, someone running a very large organisation, and they were just reflecting on how much was expected of workers in frontline service delivery, particularly people who are providing those really intensive supports to people in accommodation settings, and what had changed over the years and their span of responsibility is really quite extraordinary now.  So translating this stuff into ways that really provides them with something tangible and practical that they can quickly engage with in their busy work lives is just critically important.  That's why I guess to the audience, the Commission's role as a regulator is not only about compliance and following up where we observe things which aren't being done well, but it's also educative and it's a key part of our guidance, as Jeff has described, which is in providing really straightforward, practical guidance that links with the NDIS Code of Conduct and links with the NDIS practice standards.  We're learning as well.  There's a lot of data that is coming into the Commission from the complaints that we receive, from the incidents that providers report to us where things don't go well for people, and our job is to respond to those issues, resolve complaints and work with people with disability who have concerns and their supporters, as well as providers, and in incidents, look into the trends that are affecting deeply the lives of people with disability to grow that practice guidance. We've done that ‑ Jeff mentioned we had introduced some new standards.  We have done that out of the Scoping Review, but we have also done it out of our experience with COVID.  Julian touched on that, as did Jeff.  It's such an extraordinary time in all our lives but such a catastrophic impact on people with disability, the anxiety and the limitations just compounding existing pressures in their lives.  But lots of lessons about how to better engage across the health system and in the disability system.  Those standards are really there to guide along with the indicators that accompany them what good practice is.  They're not just a compliance tool; they are indicators about what will work well through the lens of the person that you are supporting.  So, please, take the time to engage with those things, not only in the moment of an audit but every day because they provide a richness which, as Jeff has said, has been informed directly by the experience of people with disability themselves and our growing evidence about what affects people.

 

I'm going to go to questions now.  There are some fantastic questions already on the chat. Donna has some ‑ I actually wrote a note for myself on to raise, so I don't have to, thanks, Donna, but it's the really complex area of how providers in the NDIS, where you now have this diversity of providers who are engaged in supporting a person with disability, people playing intensive roles, people coming and going with other kinds of supports that are necessary for that person, and desired by that person to enhance their social, economic and community engagement.  What are some suggestions you've got about how providers can work together around some of these issues where they all have a role together of varying degrees with a person with disability, and, in that, what are some tips for really making sure that that engagement with people with disability is authentic and driven by their individual desires and needs? I will leave it up to either of you to decide who will answer that one from Donna.

 

DR JEFF CHAN:  I might defer to Julian.  Julian earlier on gave some good examples of how practically providers can come together with medical practitioners in the space.  Over to you, Julian.

 

PROF. JULIAN TROLLOR:  I think one of the keys is really good record keeping about the health needs of the person and about the ways in which they can be supported to access good health care.  There are a lot of good resources in that space that help us collate and curate that information about the person that can be accompanying the person to a medical appointment and that can inform the medical personnel about what adjustments need to be applied, how to engage that person directly in the consultation.  These are really enduring, even when staff may be transient or casual, for that particular shift.  I think the linchpin here in making sure that things do happen and happen in a more consistent manner within a work force that's really very diverse and often shifting is the role of the team leader in support for people within supported accommodation.  That team leader I see is critical in setting the tone and the expectations of everybody else.  Also, I think a key is that ways of rapidly engaging with information about that person for new people who are coming to support the person need to be available.  Summary information about the person, a really quick guide to their behaviour support plan, for example.  Often things are so complex and lengthy, the documentation is not read or isn't adequately digestible, so we must put the information into readily accessible formats.  I have been really pleased to see some providers doing that really well with the summary of health information and the behaviour support information.  I think another important aspect is considering how we use technology.  I am absolutely distressed that I don't see in my clinical practice information coming together in an online or app‑based platform that helps us understand how the person has been, what changes have been made to their medication, what new things have been discovered about their health and how that relates to their behaviour and their wellbeing.  We could do much better to connect the different people involved in that environment through online platforms with data that can be readily collated.  Often it's the case that people come with multiple different printed sheets that haven't summarised the behaviour.  It's literally day by day with no relationship to what's been happening in that person's life, so I think technology is one of the solutions to rapidly assimilating information and app developers out there, or those with the tech know‑how to do this well may have an opportunity.

 

DR JEFF CHAN:  Can I add to Julian's response.  One of the things is where participants actually access more than one service from their home, to a day service or a recreational services, and the notion I have seen of providers having the kind of one‑person/one‑plan concept where, if agreed to by the participant, in sharing the information and tailor the information to the specific context or setting will be important.  So all the points that Julian talked about: the good record keeping, documentation, one plan/one person, sharing with the consent of the participant and of the family, and also to provide ‑ to share about each other's ‑ their learning, what they have discovered, and working with the participant at all times.  It's almost a practical thing.  Like every time things might change because someone might not be feeling well, flu season is coming up, it's summer now, and how do you share that information? Simple health care like ‑ when going out, like drink water, put a hat on, put sunglasses on ‑ these are simple health prevention strategies that can be shared among providers to do.  Thanks, Sam.

 

SAMANTHA TAYLOR:  Thanks, Jeff and thanks, Julian.  There are quite a number of questions that have come through the chat here about, I guess, an extension of that and Donna's question and from Karen and others about the role that support coordinators can play.  I think that what you have just described are some really practical strategies about that. Being the holder on behalf of a person and with a person's input, what's important to them, what do they want and expect from each of the providers, documenting that, sharing that with the providers and really facilitating some joined‑up conversations between the providers that are critical to the supports for people.  Karen has asked whether or not we could contemplate some professional practice development forums for support coordinators along those lines, which I think would be a great idea.  I know that support coordination is an evolving ‑ there is an evolving discussion about its place in the NDIS and the Commission, just to assure the audience, is very much part of that conversation and I think that is a terrific idea that we will take up from here.

 

DR JEFF CHAN:  About the support coordinators, I am aware, actually, that in the jurisdiction, the Directors here do deliver some sort of training to support coordinators in terms of coordinating in this case particularly behaviour support plan of the person, but I agree with you, there is a piece of work we can do and support support coordinators better.

 

SAMANTHA TAYLOR:  Yes.  There is an observation here, with a broad question, which I think is a good observation.  It says: "I think some of the overprescription of psychotropic medications is done out of frustration due to a lack of experience of behaviour support practitioners to implement plans that ensure a person is able to maintain quality of life", and in part, the support models is due to that lack of trained specialists, and is there a plan to address this? Jeff, you're very well placed to put your views and your description of what we're doing in that space.

 

DR JEFF CHAN:  So in addition to lifting the capability and improving the quality of service of behaviour support practitioners, we have two big projects.  One we call it Enabling practitioners to meet the outcome obligation, and it's led by the University of Melbourne, Flinders and UQ in Queensland.  We also have another specific project, particularly about supported decision making, how to involve a person with ‑ a participant who may be subject to interventions and how we might involve them in that support decision making of that project.  There's also other pieces of work we have planned for next year.  Some of them relate to ‑ without going into the detail at the moment because it's still very conceptual stage ‑ how we better ‑ so there is a lot of work for behaviour support providers but now we are trying to draw our attention to in line of the work force capability framework on direct support workers and implementing providers.  So that's some of the work that we intend to do.  I am sure later you will speak on our masterclass type things.  So there is a very targeted and consolidated manner in lifting the capability of practitioners and providers, including direct support workers. Thanks.

 

SAMANTHA TAYLOR:  Thank you, Jeff.  There's a question here about your ideas, both of you, about the importance of trauma‑informed practice. Julian, do you want to kick off on that.

 

PROF. JULIAN TROLLOR:  Thank you. This is a critical area.  Trauma is regrettably a very, very common experience, particularly for those with intellectual and developmental disabilities.  And multiple experiences I have had clinically have led me to the conclusion that without trauma‑informed approaches to care, we may end up administering care that is poorly tailored to the person's need or ineffective because trauma issues haven't been addressed.  So I think in terms of capabilities of NDIS service providers, this is really critical.  We recently launched some training, e‑learning, on trauma and abuse and how disability professionals can support people in this area.  I think that is a very important addition to our suite of resources around the mental health needs of people with disability.  So that would be one place to find some assistance, but I do believe it's absolutely critical.  Obviously it has a strong intersection with wellbeing and mental health more broadly, and one of the issues here I think is that our health professionals are beginning to engage more strongly in trauma‑informed practices, particularly in mainstream mental health, but the awareness of the degree of trauma experienced by people with intellectual and developmental disabilities may not be well‑known by GPs and practice nurses and by non‑specialist staff in the area.  If you are concerned that trauma may be a driver or a key influencer of the person's wellbeing and behaviour, then I think it's really important that you are very direct with health service providers in helping them understand that and in providing information about the experience of trauma and its impact on people with disability when you are connecting with health services because it's not ‑ whilst it's something gaining currency and awareness in mental health mainstream and specialised services, it's not within all services as a well‑known issue.

 

SAMANTHA TAYLOR:  Thank you. There are so many good questions and they're set out with rather large introductions.  So I'm just navigating this.  There's a really poignant question I think here and very contemporary to the work of the Commission around how we might go about educating medical professionals around the issues of polypharmacy, particularly in the context of chemical restraints, and I would like to say just keep on watching, folks, because there's some work that we're doing that will be described in more detail soon with the Aged Care Quality and Safeguards Commission but also the Australian Commission on Safety and Quality in Health Care because, of course, the issue of medical practitioners and prescribers is key to tackling these issues and that dialogue between the disability sector that Julian described about medical practitioners understanding the impact of these measures, that might roll off a script in a moment of a check‑up, but have significant and compounding effects on people with disability.  It's just really important for us to tackle. So I'm just assuring that, yes, we do have plans and actually I think, Julian, we've been quite successful, if we think about COVID and the conversations you and I had really early on in the pandemic about how do we ‑ and the work that you did in corralling colleagues across academia and other places to really think about what we could practically do to tell people in frontline health services what was going to be involved in supporting a person with intellectual disability who might be exposed to COVID and affected deeply by it.  That's a model for how we should be thinking about talking to the health sector and growing its capability as much as the capability of the sector that we regulate here. There's a question here about how this might work with unregistered providers.  So, Jeff, there's a good reason in the design for the NDIS and our regulatory response that some providers are not registered and others are and that's driven by a range of issues, mostly risk to participants or their own choice, so the agency management requirement to be registered as well as when implementing, or maybe possibly implementing in the future, a restrictive practice, there's an obligation to be registered.  But did you just want to talk about how we're designing this material so that it's applicable no matter who in the sector is working with people with disability?

 

DR JEFF CHAN:  Yes.  Thanks, Sam.  I think you're best placed for this, but other than to highlight that the NDIS code of conduct applies to all people who are involved in the support, whether directly or indirectly, of the participant and that code of conduct cuts across registered and people unregistered.  There are also other quality indicators, and it's the simple fact of our NDIS Act that talks about prevention of harm to the person and providing reasonable and necessary supports for the participant that should guide whether you're a registered or unregistered provider.  But I think it is good perhaps, Sam, to give some ‑ you might want to elaborate on this.  I am just flicking it back to you.

 

SAMANTHA TAYLOR:  Oh, gee, thanks, Jeff! Yes, and you caught me because I was busily reading the next question. I guess what Jeff is talking about is right.  We do regulate everyone and there's guidance for everybody involved in the NDIS, and even we promote our resources so that they're applicable to any sector really, where people with disability are engaged.  So, yes, we don't see this as being a partial approach, which is only about registration, and we do expect these practice issues.  Where the code says that a provider, no matter who they are and what status they are, will provide supports with care and skill does exactly that, and our material is there to assist in developing that skill and that competence. I think we've got time for maybe one more question.

 

People are asking, I understand, to connect with the resources that Julian has referred to.  We'll do a couple of things out of this webinar.  We'll provide you with all the links that we've referred to during the course of today's discussion and for some of the big themes that are coming through the questions, we'll publish a little fact sheet that we'll send out as an alert with the kinds of things that people are interested in, just so we don't cause you to miss out on a response to your questions.

 

In the interests of time and because we do want to spend a little bit of time showing you a video, because it's Friday afternoon and plus it's quite beautiful, so that's always nice to send on a high, isn't it? I do want to just move to wrap up. I want to thank Julian particularly for his time this afternoon and for your tremendous insights into this such important issue and to Jeff as well for your leadership in these areas. We are about to launch a bunch of things, so this is ad time, OK. But it's mostly ad time because we think ‑ we consider that you need really to engage in the material we're developing and make the time yourselves to engage with it and also the people that you work with to engage with it because it is important and it is grounded in evidence about what reduces harm for people with disability and what promotes the rights of people with disability to live good lives in the way that they choose, and that is why you are all here, to hear about our thoughts on those issues and to promote that good‑quality practice so that people with disability can make the most of their participation in the NDIS, which most of us have fought so hard for and people with disability particularly fought so hard for. We're going to be issues some e‑learning modules on meal time supports that will help you engage in your ‑ in the standards that we've just released on meal time management and also on severe dysphagia and I would encourage you to engage in those standards.  The indicators are really good steer to what we're looking for in terms of good practice and we'll be promoting those across the sector, including through an e‑learning module. We're also going to be doing some detailed training and producing further materials around meal time supports generally.

 

We've got a communications module that you'll see a little slice of in a moment, as we move into close, and we won't be back after that, so if you get bored, which I don't think you will, you can go off to your Friday afternoon.  We're doing a lot more analysis.  Julian's Scoping Review for us was a baseline, and really it was designed to look at what had been happening before ‑ well, before the NDIS Commission began and before we began to regulate under the framework that we have carriage of.  It's really important for us to see over the short to medium term, but then longitudinally, what is actually changing for people with disability and are the strategies that we're deploying from this evidence making a difference to how providers are delivering supports, our connections with health care, are they creating a difference and a positive impact for people with disability.  If they're not, we need to change and shift so that we can find strategies that do.  That's why we're here.  We are ‑ a number of people in the chat have referenced the Workforce Capability Framework.  I think that's fantastic and I wanted to thank people because it's only been out for a short period of time.  Julian's done a word search.  That's amazing.  I haven't done that.  I'll have to try it.  But it's not a compliance tool.  It is a tool for the work force to drive culture and behaviour and to really focus on what it takes when you're engaging with people with disability to give them the best possible outcomes from the supports that you're delivering, which are about them living really good lives.  So please engage with that, and over the next 18 months, we will be implementing a range of tools and training guidance to help you apply that framework in the context of your organisation. Jeff gave me a nod on the masterclass series.

 

There'll be a lot of material coming out around the Scoping Review in respiratory illnesses, meal time plans.  We've touched on issues around polypharmacy and its implications.  So those masterclasses will really shift the way that the Commission is engaging with the sector to give you that deeper engagement.

 

In the one minute I have left, I'm going to thank you all, thank our presenters, but thank you all for joining us.  It's been a spectacular turnout and that really heartens us for this format and we will continue to think of ways to engage with you.  Final plug: help people, support people with disability to get vaccinated if they have not been already.  Anything you can do, be as creative as you can be.  We must not leave them behind and I have sent a letter to all providers about ideas for making that happen and I have sent you a message about making sure that they have ‑ their decisions have primacy in making the decision to be vaccinated.  Thank you so much and I'm going to leave you now with a preview of our supporting effective communication module. Have a great afternoon.