Lighting the awareness torch about supported decision making

you want me to put the presentation on I don't think they have a presentation would be able to share the screen I can share my screen if it's helpful I flicked it through to you in an email Xandra but I can the co-host sorry I wouldn't have seen it this

morning Shar is the best option I think

cool well that was really wonderful from Erica just while Ken's getting ready um we going to have to ask you to come to all of our egl presentations as well because everything she spoke about we can touch on within the the eight principles that belong to the EG approach also so um yeah um Big Ups thank you Erica if you're still there um thank you again

can you tell me what you can

see what can you see what can you say um it's it looks like it's the titling in good lives but it's not in the normal PowerPoint sort of format but we can see it maybe I'll just zoom in because when I push play what it does is it switches it over to my other screen and I I don't unfortunately have the skills to uh to figure that out on the spot did you email yeah I think that

works okay um K Coto hello welcome everybody it's a real pleasure to be joining uh you virtually uh and um I'm uh zooming in from TI noi ATA and um My Pal Pete is there in person so um we're going to be doing a bit of a hybrid presentation and so uh uh please extend us uh your generosity of figuring things out as we go along to make it work well but it's a pleasure to be here um my name is Kiran Morrison I'm one of uh the family members who are on the national enabling good lives leadership group I'm also a parent to a a very proud parent I might add um of a young disabled son my wee boy Loy is 10 and Loy has Down syndrome so he's my very special and beautiful connection to the community I sat on the committee for the New Zealand Down syndrome Association through my connection to the Wellington Down Syndrome Association I also have a few other roles in the community I'm the chief executive of Sams which stands for standards and monitoring services and what we do is we provide a range of disabled and Fino Le services around developmental evaluation community and leadership development um and uh capacity building I also hold an honorary position at the University of waor where I contribute to the teaching and research projects so um as I said really pleased to be here and I'll hand over to Pete to introduce

himself Birmingham [Music] England so I ha with my Heritage fromti kah over in h Bay and kah down in Theo peninsula in the South Island we've also got family Connections in Norway and back in Birmingham and England as well who means I'm a vision person disabled and my name is Peter alen uh so a little bit of brief um history on where and what brought me here today is that I was lucky enough for since 2017 to be elected as a member of the um Regional leadership group here in the mid Central as a disabled person um so I've sat on that for going on to six years now and then recently more recently I've also been connected with a charitable trust called my life my voice and I don't have my my life my voice today but one ofes does um and we're a disabled govern disabled lead and a disabled staff mainly um a group of people who are out there supporting and helping out disabled people in the community we've got a couple of major focuses one of them is offering an alternative connected service here in the mid Central and the other one is we have a team of Community Development people as well and so that's what we do with my life my voice but again just like keran really privileged and lucky to be sitting on the national and good lives leadership group where we have some fantastic discussions and focusing and strategizing on everything about neing good lives and that's what brings us here today so um just to finish off my

introductions Coan so just a big UPS to Xandra and obviously ER our previous speaker for for delivering what's been here this morning and now hand it back over to you K C thanks Pete uh so what we want to do really is kind of springboard of what Eric has spoken about and um build upon the cordor in terms of connecting egl the enabling good lives Vision principles and approach with safeguarding and and as Erica was talking I kind of jotted down some of those key words um those key words that relate to safeguarding and also egl so you know choose self-determination relationships decision making good life so you know you can really feel the the the similarities and the Sy synergies and connections between these two concepts which when they are enacted and are connected well uh ensure that disabled people and famili rights are upheld are up how so um what we're going to do is just have a bit of a cordor quite conversational aat around how egl and Safeguard and connects so we thought we might start with a little bit of um context and history around egl we know we don't have long so we're going to keep things high level but as always you're able to get in touch with any of us through the national enabling good lives leadership group if you want to know more and I will send the PowerPoint through because I'm aware that probably probably the people online can't see the screen but anyway so um brief introduction to the egl approach leaders in the disability Community developed the egl approach with the intent of Shifting power and authority from government to disabled people and farno egl is a social movement in response to the oppression and discrimination of disabled people it's so much more than funding it's so much more than uh uh uh the supports that come through disability Support Services there are important aspects to it but it's about Choice it's about control it's about opportunities for the self-determination it's about community and a sense of belonging egl is aligned with farno order and the social model of disability and again hearing Erica talk we we we heard conversations and themes Rel Rel ated to the removal of barriers to be able to participate well in community uh the egl approach is a foundation and framework to guide positive change for disabled people families communities and the government the vision and eight principles are based on respect towards disabled people and their families culminating and trusting disabled people and their families to be the decision makers in their own lives Pete is there anything you'd like to add further no that's really good than K and I just again really want to focus in on choice and decision making which again you know really enhances what Erica was talking to us about today uh to make choice to have choice and to make decisions uh sometimes you actually have to be able to develop that for people as well and so that's one of our focuses from an enabling good lives also is making sure that we're out there doing some Community Development around the capacity and capab ility building um and so yeah walking alongside pet and obviously supported decision making and safeguarding that's going to help us reach that goal so um yeah really really important choice decision making right up there at the top end because the choice and decision making then you can shift the power and the authority K car back to you thank you so I'm just going to roll um down to the next slide oh goodness

the vision slide there can everybody see that yeah so we have the slide that on it I'll read it out it says in the future disabled children and adults and their families will have greater choice and control over their supports and lives and make more use of natural and universally available supports and so the egl vision provides that direction for change it's that end goal where we want to work work towards as we said it's about shifting power and authority to to disabled people and families being able to have the say so in your own life is something that many people many of us take for granted but disabled people have a long history of having other peoples deciding on their behalf about uh what they're going to do on a daily basis what they're going to eat when they're going to get out of bed who they're going to live with uh so both those small everyday mundane decisions as well as some of those really really big decisions around you know who has control over my body and uh who do I get to spend my time with we know that barriers to we know that when barriers to decision making are removed and disabled people are provided with information experience and support they can and definitely want to make their own choices and decisions in their own life it's really about K because um again something else that Erica said today and I was listen to Erica's um presentation and some of the P presentations quite a bit but every time I listen I take something new away and today's take away from that one was that you know decision making is a skill and so that skill like any other skill you can develop it you can build it and you can make it much better and so yeah knowing that that's a skill and that's one of our focuses so that we can again shift that power and authority because power and authority is all about having confidence and how do you build confidence you practice you develop the skill to do it again sorry K interrupted back to you then yeah no that's great and I was um I agree P what I was thinking as ER was talking as well uh those skills to decision making are not something um that we necessarily all born with anyway they are it is a muscle that you need to be able to flex uh and I'm certainly not going to pretend that I've made the best decisions throughout my life all the time and I haven't followed those those good steps to decision making so having opportunities to make decisions and to make mistakes that Dignity of risk is really really important important in terms of being able to be uh self-determining and making decisions about your own lives and it is really a value shift that Vision uh underpinning egl it's about recognizing disabled people as experts on their own lives and Community needs and that Vision um that we have really does capture those personal and structural aspects of disability having information and accessible and easy to understand formats is uh is fundamental to to all of that um and really being able to have that information at the right time to be able to make those

decisions nice just just jumping in there again Ken um I'd been to a meeting not so long ago where we were talking about Dignity of risk and as you had that meeting they turned around and said you know let's make it that a positive let's refrain that how about let's call it you know the opp the Dignity of opportunity um so that we make that positive aspect to some of the decisions and some of the challenges that we confronted with so yeah Dignity of opportunity another way of reframing dignity of us yeah that's yeah AGL principles is everybody familiar with these there are eight of them and it's so holding your head up because I won't see that

I'll I'll read them out so we've got H self-determination beginning early person centered ordinary life outcomes mainstream first money enhancing easy to use and relationship building and what we thought we might do here is just provide a few examples uh related to some of these egl principles and also open up to the crowd as well to see if you have any thoughts around uh these egl principles and uh examples to kind of give life to them in terms of how they relate to to safeguarding awesome hey can I leave that one please K in because I think this is a great place we can actually refer back to Erica's presentation because each and every one of the eight principles that we talked about feature in that discussion that she had so you guys here or you guys out there in Zoom land let's give us just one one example that Erica talked about that's about self-determination can you think of anything that was self-determining that Erica spoke to and no holding their hand up again it's okay anyone because I'll ask to give the answer if you don't have it person centered person centered was another one there was there definitely was because person centered means that that's that person that's in the center of all of those um decisions that are going on and as it is with supportive decision making or safeguarding it's about the person it's individual and that's what's really important both about what Eric spoke to today but also the enav good lives approach it's different for everybody we are all individuals so every time you come in and you talk to talk about something it's got to be focused on that individual I spoke to a wonderful lady neurodiverse and she spoke I told me this comment she says you know what if you've met one autistic person you just met one so don't apply what you know with that person to all the others there might be similarities but you know individualize is really important I was thinking when there were she was asking about tea or coffee um about self-determination if you've never tasted the opposite how can you make a choice you often just pick tea because your parents have always drunk tea or you pck coffee because when you go to a cafe they ask you if you want a coffee so you say yes you've never tried a cup of tea wonderful and you know that brings us back to our vision what's the second part of our vision Choice control what is choice choice isn't just one option it's having at least two or more so yeah you're quite right self-determination being able to make a choice along along many options add to the te as well you don't want like you that option but also that option to deter that you don't want any of the options that apparently available okay hey I'm just going to ask a quick question can everyone on Zoom land hear hear our audience here in the room yeah thanks Pete awesome awesome okay cool um do we have any others any other the principles I manner enhancing because she talked about easy read um yes was more than just one waying information that's wonderful read great and I thought of that one too but the other principle I I appli to that was easy to use because for you know three sectors in our community and we're talking about our earning disabled and our our Down syndrome people and we're also talking about our blind and vision and and we're also talking about our hearing and death people as well what's easy for them to use is about communicating in the way that they prefer to be communicated with and so yes very good like it any others hey P can I jump in there um so I think um I think about this lot in terms of being a mom and being a parent to a a young a boy young boy with Down Syndrome the principle of beginning early so how can I as a mom to a young disabled son support him right from the very beginning to be able to grow his skills in making decisions what are the small things I can do on a daily basis that uh provide him the opportunities to make choice and control and how can I support the different um uh people and spaces and systems that he both interacts with and a part of his life to be able to provide him with those same opportunities as well school for example yeah yeah yeah cool cool hey I you jump in there K and I'm going to jump into with my next one and the next one is relationship building and again if we're looking at supported decision making and again Erica said this all the way through her presentation trusted person have you get a trusted person it's all about relationship building it's all about getting to know someone to understand and again even though you may know them and understand them don't do for do with that's a really important part of that relationship building and trustworthiness as well okay I think we still got a couple more to go does anyone else want to add any more to it or I'll get carry in to carry on um ordinary life outcomes so from the conversation that Erica had it was to try and support people to live everyday lives and and their best life essentially yeah best life yeah I heard that one too that was good excellent hey K should I pass it back to you again yeah thanks Pete I'm going to head on to our last slide now which is um around Mana voice and self-determination and uh at enl this is a really key uh guiding principle and concept and and also a paper that guides the work that that we do and the work that we do alongside the community there's uh a a a link on the PowerPoint that again we will sent through directly to this paper so you're able to have more of a read of it to get more of an understanding but here we just wanted to have a bit of a cord around how supported decision supported decision making sorry um links to creating opportunities for disabled people's voice Pete did you want to kick off with that or would it be helpful if I read through the the points on the PowerPoint just touch off some of those points that car and that'll be great okay so the first point is giving voice to disabled people at individual family and Community levels and so about that voice again voice isn't just about being able to speak up but it's also about being who and so again you could touched on all those things you know speaking understand and then listening as well and so um yeah really important with regards to that because something that we consider extremely important within the NL space and the egl space is independent voice uh again independent you know it's talking about an individual it's talking about personal and so that's why one of our big focuses is about capability building skills let's give people skills so they can have that true voice and they can speak up for themselves whether it be personally or through a supported decision making and safeguarding frame so yeah how about yours K yeah if I think about uh voice at an individual level it's really uh about that individual person having the ability to exercise decision making and having control over their daily decisions so small things that make an impact on their daily life we think about uh Mana self-determination and voice at Family level so egl at its ESS Essence is about farno order it's about improving well-being focusing on the family as a whole and addressing individual needs within the context of families and for um uh you know families play a really important role in the lives of disabled people um and supporting disabled people's rights to Choice control and self-determination and families can help amplify the voices of disabled people both individually and collectively it's really important to remember though that the voice of families and other allies should never ever outweigh the voice of disabled people and uh here we see that shifting of authority ity again which is uh demonstrated through the the the politics and practice of supported living uh supported um decision Mak sorry and then at a community level P did you want to talk a little bit about the importance of collective independent voice uh yeah Collective independent voice and we're truly lucky here in the mid Central because you know we've started to build and develop that collect that Community voice as well and that's through our our core groups that we have at Ground FL level and so we we have those core groups that are um are split up into the different sectors so it's a little bit Silo but therefore for particular purpose and reason and we have our disabled people's Core group we have people who want to get together and can have a safe space where they need to talk about what they need to talk about we have our family and farno group that do the same thing and then we also have manaa and M who get together and they have their discussions around what's important for them because it may be different to others as do Pacifica and then we've also introduced a couple of other groups in Community as well one is or young adults group really important because the young adults see life and the world differently than what we do and so it's good to have all of these different perspectives and that's about that independent voice from a community level but then with all of those cor groups we have the opportunity to bring them all together so that we can have a truly robust discussion about you know what's priorities for us and what can we do what can we focus and Target on first and foremost and believe me some of those discussion can get quite robust which is good because it means there's lots of passion in the room how do you hear the Small Voice yes the Small Voice how do we hear that Small Voice support a decision Mak it's making sure that we have the right people in the room who can help and assist and walk alongside the person to get that voice across and so at our at our leadership groups uh we have people from our de Community we have people from our learning disabled community and so as we discussed before or how do we hear our de people through NL interance so really important that they have that there because truth be the de Community have their own culture which is very different to the way our culture is in some of the aspects and so to be a to hear them and to be a to compare and then say hey what can we do to help and assist as it is with our learning disabled community and so really important that they too sit at the table but again we need to have supportive decision makers there so that we can make sure we hear what they want to tell us just because you're not good at communication it's not your strength doesn't mean that you communicate yeah yeah and how do you hear from the people who can't respond to an email or who aren't going to be um you know the squeaky wheel gets oiled yes how do you look past the most outgoing people um you know you can see that and lots of levels of politics people who are very outgoing um get a lot of attention yeah but the people who aren't alloud are valuable you're quite right you're quite right and so the first way to to combat that is to know about in the first instance colleague and I have just returned from a AGM conference up in Orland where the chair who was there he knew the people who sat in the room and there was 50 people in the room and another 30 people on Zoom but he knew those people so he knew who those loud voices were and he quite clearly stipulated that during the the meeting and everything says look we hear from your voice all the time we want to hear from the people who don't speak out and so it's about the leadership within that group who know what's going on to make sure that they share that responsibility amongst the room and sometimes you actually have to do that with intent and ie I know sometimes when we were working with our learning disabled we'll have five minutes on the side for them to say hey there's a thing on the agenda that would be really important for for our people to to speak to and so we would ask the supported decision maker or the meeting assistant with them to see if they can work with that person to make sure that there's a perspective that's brought across but that's a really valid and really important piece was really struck by Erica's number one described that decision so often they asked to have an opinion on something but they don't have the time to think about it or they don't understand yeah what the question is yeah and so it's about making sure that people do have that time um and sometimes it's really difficult it's really difficult to do that because it might be something from left field and something a good friend of mine that and many of you might know Martin Sal he said when a neighing good lives first came along he said well they're going to have to find out about disabled time now because disabled time is about having the time to process it is about having a time to consider and then comes back with a response because yeah you're very accurate with it can I just jump in there Pete um and just responding to that question about um the range of different way ways voice can be heard and that's a really important thing that NL is uh working on broadly with with Community but also alongside government to support them to understand that voice there should be a range of mechanisms and ways in which voice can be heard H and if I speak about um some of the work that I do through Sams where we do developmental evaluations of disability Support Services in that space we we speak to hundreds and hundreds of people across the course of the year um lots of people with learning disability and lots of family members about their experiences of disability support services so that's a very deliberate way in which we are creating space to hear the voices of people and to feedback those voices so they are heard in a way that impacts upon decisions that impact upon their lives there are other also work other work programs that are in the pipeline stuff around peer monitoring that you may have heard so there's um a whole range of different ways in which uh voice can be heard uh it's really important that at a community level that we're equipping uh and supporting the people within our community to be able to engage in those P processes and supportive decision making is is obviously key to that nice so that we've got a couple of more points on the slide I'll just read I'll read all of them out and we can um just kind of wrap things up from there so Mana represents the strength and authority of disabled people it shows disabled people are valued and respected and are contributing members of society self-determination recognizes that disabled people are experts in in their own lives and should be able to exercise full autonomy voice is more than being heard it is about the ability to exercise decision making and shape the disability support

system nice is there those are the points y awesome um anything else you want to finish off with summary uh I wondered if any further questions um from people on Zoom or people in the room with you are there any further questions or any other comments or points you want to make Now's the

Time excellent um that's us from in here was there anything on Zoom that people wanted to mention as well or

no no questions question no questions on Zoom no no legal questions who's being very quiet in the corner a legal executive so anyone's got any questions in that was going to be joining us later anyway but for the zoom people I was thinking if they've got any questions would you want to introduce so I can understand the kind of questions yep so April is um April is leg legal executive from Mano

Community hello um so um yeah a kman from Community Mano law is here she will be here this afternoon but for your time that you've got now if You' got any questions that you might want to ask her about guardianship or enduring power of attorney or any other other sort of little question she might have that's going to really put her on the spot um yeah so does anyone have any any questions thank you for coming she's hidden do you want to just come PR and be here L yes come on here you can take my spot just in case you guys on Zoom this is our lovely a hi so I'm April manun just across the road so if you don't catch up with me today you're quite welcome to go across the road the reason I'm been well I think the reason I've been invited here today is because I do a lot obviously with the legal side of things particularly When people's capacity is questioned H by may an authority or medical and they're asked to get legal PES in place for a person who can then be legally appointed to support that person with their um decision making and so I do a lot of that um in my day-to-day role and so I have a lot to do with especially those people supporting people with disabilities um and how there's sometimes a lot of con confusion and misconception about the legal aspects and why it's needed um so I think that's why that's why I'm here today as my view point and assistance with that to I guess help make it clearer because um like Erica said the law is under review um so hopefully that will make things better and more understandable but in the meantime obviously we need to work with the law that it is now and I that's where I assist I guess in helping people I just ask a question which I hope is a short one uh what are the different options for going for guardianship um getting a lawyer is there another option yes you can to us because we're free and we can do it anyway so that's a sort of thing that we assist with the short answer for the

S so business cards are there but we are across the road next door to the cathedral okay so we're in the old Radiology building so it's exactly a lot of the work that I do tell you the options which way to go because the usually is just one or two standard ways how we determine which way that is and assist with that process going from there and are there other aols around the country well all over the country um so but not all of them because we are run all independently and so the what people do at each the community laws depend on what staff they've got so I sort of Although our area is hor no to I know the manager at the wongu doesn't have the staff there and she knows me so she would refer people here um so yeah contact your local Community Law is what I would say to find out they should be able to tell you you can assist a lot of people con think they have to go to a lawyer and spend thousands that's not and actually you can do the papers yourself or your person can so it's a free service through the court it's one way another way is that there is more cost invols but yeah we did the Thousand option oh so any questions I will be here for this afternoon as well but you know where to find me as well so question in yeah there's just um Erica is just actually saying there of course um the other and the preferred option is to actually explore um options to guardianship is really to explore supported decision making and advocacy that's the first option and the best option and Pat can help with that as well yeah is that a free service

Erica uh we have a range of services so depending on the type of support that you want we do have a contract uh within the mid- central region specifically to be able to provide independent support for decision- making free of charge yes perfect thank you thanks so you'll see Erica um sorry you'll see eight4 later um and you're welcome to um join us for they're asking can the afternoon be on Zoom or teams for any you are working from home well yes I can extend the time if you really want to but it will have a different format for those of you that are on Zoom to what it is today right now um but um we'll make it work if you want to join us we'd love to have you this afternoon as well but we are all taking a lunch break shortly so um I just wanted to thank our speakers I it's quite nice for a change for every to actually give a speaker gift in person versus showing them virtually so I don't send these gifts um bya the mail in case they don't to ride but because it's a bottle of wine thank you so much for joining us today and for speaking um we appreciate it and for um the speakers who have spoken online um we send you a candle down lights candle I'm going to make it nice and down is a social Enterprise um that that is also um a living wage credited organization so and they employ people with Down syndrome and other disabilities but they do get paid a living wage to produce candles and they have a charity arm as well every candle that is sold $1 goes to the charity arm and then the funding that they get from that goes to three different organizations so the virtual conference this year is made possible because of downlight and Southern stars and all the people that have donated to that um so thank you and just as the final plug as well don't forget the conference isn't over yet and there's lots of sessions still going so you're welcome to join excuse me everyone there's going to [Music] be it's a t we don't have to rush so thank you very much so all of you that have joined us online thank you so much hope to see some of you back later I will extend the time so that that link that you've used will carry on working just carry on using that and to everyone else we're going to have a break and I hope you'll all enjoy join us for a meal Pete could I ask you whether you could um just for for Kai thank

you thank it's not quite the end of a kak here but these words I think are really um very powerful and I just want to end with that because I think it really speaks to supportive decision making and how we have to stand firm in what we believe um and also on egl so it's Ki be strong be steadfast and be willing thank you

everyone ER thank you

Erica thanks s and so we've all been here before from here you guys have been before so kitchen accessit got loads out there some really yummy stuff that courtesy of Down Syndrome Association so thank you very much for sponsoring that lunch so yeah let's go and eat and then be back at to please there's also a whiteboard if you have any more um questions or information just pop it on

anyone oh and just to say they are we didn't know I don't everyone I in terms of diet requirements but we have got some that there's free de free just make yourself known if you have special diet free requirement sh that the saies on the plate of glutenfree and the crackers and the humas um glutenfree and I think and there some glutenfree the chips are glutenfree as well um and the biscuits I haven't opened the biscuits are beautiful open pack the rest is