Self Advocacy Resource Unit (SARU) Projects Update

This was the third session at the Advocacy sector Conversations forum held at the Queen Victoria Women’s Centre on 28 November 2017.

Other sessions at this forum included:


 

Overview

To determine the sustainability of self-advocacy and self-advocacy groups in the shift to individualised funding, the Self Advocacy Resource Unit (SARU) have been leading several projects. Sue Smith, Dean Dadson and self advocates, Bec Biddle and Fran Lee, provided updates and findings from the initiatives SARU has been involved in over the past year.

 

 

References mentioned in  this session:

 

Transcript

 

MELISSA HALE, DARU CO-ORDINATOR:
There has been a lot happening in the self-advocacy space and a number of fantastic self-advocacy projects coming out of our sister organisation Self Advocacy Resource Unit or SARU.  It gives me great pleasure to introduce Dean Dandson and he will take it from there.  Thank you Dean

DEAN DADSON, SELF-ADVOCACY RESOURCE UNIT (SARU):
Hi, everybody this is probably a bit hard in the afternoon so you might be a bit tired but hopefully we will be able to present you with some great information.  I’d like to firstly introduce Bec Bittle who is going to speak today.  She will talk about All Abilities Advocacy South West.  Sue Smith who is from SARU where I work and Fran Lee who is here as a representative of Brain Injury Matters.

First of all what we’d like to do is just to start off with a bit of a small film of a group that we’re currently working with.

 

 

Pretty fantastic group.  I’ll talk a little bit about the Rainbow Rights and Advocacy Self Advocacy Group just a little later.

Today I sort of wanted to talk a little bit about the NDIS transition support package that was made or two support packages actually that have been made available through the Victorian Government to SARU.  We received the first round about 18 months ago and its overall goal really is to support self-advocacy groups to get ready for the NDIS.

One of the obstacles that we’ve sort of found through working with self-advocacy groups and it’s been talked about by Mary earlier on and I’m sure you discussed it earlier on in the day, is the lack of information around future funding for self-advocacy groups and their resourcing.  So most self-advocacy groups don’t receive any funding whatsoever.  There’s probably I think there’s about four that receive very very little funding up to about $30,000.00.  It’s not a lot of money.  One group does receive a fairly substantial amount and that’s Diversity and Disability who work with people from CALD communities.

I thought I’d talk really about the first round and what we did with self-advocacy groups in partnership to try and get them ready for the NDIS whatever that means.

There are eight main aims and I will talk about the aims and just a few of the activities that we undertook for those things.  The first one was to strengthen existing self-advocacy groups and networks to increase their engagement with the NDIS.  As part of that the activity that we sort of undertook was doing a swat analysis with most of the groups and that looked at obviously strengths, weaknesses, opportunities, threats but also looked at their training needs, looked at partnerships, engaging with other groups other organisations, other politicians within the community to strengthen them.

We also through that swat looked at risk self-advocacy groups.  That’s self-advocacy groups that didn’t have a lot of natural supports around them or that were sort of in trouble because sometimes groups ebb and flow.  So we wanted to also look at those groups and one of the aims of the first transition package was to actually bring those groups that were at risk out of risk and into healthy self-advocacy groups.

The second aim was to support the establishment of one new self-advocacy group including its engagement with the NDIS.  Rainbow Rights were the one and what a fabulous group.  They’re actually the first LGBTIQ plus group for people with an intellectual disability in Victoria and possibly Australia.  We don’t know if there’s another self-advocacy group around but they’re a fantastic group and they’re at the moment just growing and doing a number of things.  I will talk about that a little later when I talk about the innovation in advocacy projects.

The activities that we undertook with Rainbow Rights was providing support to members to sort of develop a belonging, some group ownership and that meant getting rid of that’s probably not the term I should use.  That meant ensuring that support workers no longer came to the group because what we found was that support workers were coming along to the group and the power sort of structure sort of changed.  The moment those support workers left the group things changed.  Now we’re trying to sort of establish that sense of it’s our group not my group but their group and that belonging.

They’re a fantastic group but they’re new and it will probably take another good 12 months to get them really established.  We’ve been working with them for a bit over 12 months now.

The third aim was to promote and support self-advocacy group network development in the context of the NDIS.  That was around sort of building local community networks with DSOs with LAX with other support group’s statewide and Australia wide networks.  Sue is going to talk a bit – well a lot later about the Australian Self Advocacy Project and the Victorian Self Advocacy Network, which links, into that.

The fourth aim was to support community capacity building of self-advocacy groups and that involved mapping community to identify local champions and key stakeholders.  We haven’t done a lot of that as of yet with all the groups.  We’ve done bits and pieces but that will continue into the second round of the transition package.

The fifth aim, well it’s to provide resources and training for self-advocacy groups including NDIS specific training and resources.  We did, we developed some targeted training based on the needs of the groups and the aspirations of the local self-advocacy groups and we produced an NDIS specific English training using a range of accessible media.

The sixth aim was to build the capacity of people with disabilities to participate in the NDIS.  That was more individual rather than group.  What we did was we developed and distributed resources including that training but we also developed up a short I think it’s about 10 minute film called What Do You Need to Know about Preplanning, about getting ready for the NDIS.  It was in very plain English, a fun film.

The seventh aim was to build the capacity of SARU to increase support and resources for self-advocacy groups across Victoria and part of that was to review and redevelop our SARU website.  We’ve done some of that but it’s going to take a lot longer.  The new website hasn’t gone live.  It will be awhile before that happens.

Then the second round continues very much down the same path with the addition of employing a SARU project worker three days a week until June 2019.  The aim of that project worker is really to work with the groups around submission writing for the ILC.  Working with each and every individual group to get them to a stage where they can actually put in submissions so some templates stuff like that around what it is that they want.  The other thing is that this worker will take some work away from myself and my other colleagues managing employment of and providing some supervision to current support workers for the groups.

What has sort of occurred over that time are some really really good partnerships have been developed with advocacy organisations including AMIDA, including Grampians Disability Advocacy and also RIAC.  There’s lots I think of opportunities there for the groups to have some more partnerships with other advocacy organisations.

I’d like to call Bec up now.  Bec is going to talk a little bit about All Abilities South West and after Bec; I’ll talk a little bit about the advocacy innovation projects.  Thanks Bec.

BEC BIDDLE, ALL ABILITIES SELF ADVOCACY GROUP:
Thank you Dean.  Hi everyone, my name is Bec Biddle I’m the representative for the All Abilities Self Advocacy Group in South West Victoria.  I’m also on the Victorian Self Advocacy Network VSAN Committee and the NDIS Working Group and the Australian Self Advocacy Project.

I have been a representative for the All Abilities for around six years.  In my time, I have attended a lot of self-advocacy meetings in Melbourne representing the group.  I also help Kylie All Abilities support worker, with stuff around Dangerous Deeds exhibition in Warrnambool.  I also help her with the Speak Out Space in Warrnambool.  The Speak Out Space was a shop front where we did artwork and Dangerous Deeds projection night.  It was a space where we could sit around and talk about self-advocacy and other things and chill out.  It went for about a month and was sponsored by SARU.  Nearly 200 people came along over that time.  The Speak Out Space had a huge influence on the All Abilities group and they really enjoyed it, catching up and talking to meet with their friends and All Abilities thought it would be a great thing to have always.

All Abilities now has a choir and is working on a CD and we’re going to launch it at the Port Fairy Country Festival.  We are also working on the All Abilities having a smaller group to talk about issues and talking those issues, taking those issues to the bigger groups.  The groups that are part of the All Abilities are from Hamilton, Terang, Portland, and Warrnambool.  There is a lot of travelling involved.  All up, we have around 70 members as part of the project.  We are trying to work out better ways to meet and talk about issues.  Thank you everyone.

DEAN DADSON:
Thanks Bec.  Well, All Abilities are doing an enormous amount of work and they are also part of the Advocacy Innovation Project grant that we got.  Some fantastic stuff there so congrats Bec, it’s great.

Okay, I suppose I’d like to talk now about the innovation in advocacy or the Advocacy Innovation Project.  Working with the self-advocacy groups SARU actually applied for the grants earlier this year and we actually received funding for groups, which is fantastic.  One group was All Abilities another group was Rainbow Rights, which you just recently saw, New Wave and Deaf Blind Victorians.  Also, what should be noted is that those groups also receive support through the transition package as well.  It’s a bit of a bonus, which is fantastic.

Now I’ll just talk about the four projects.  Rainbow Rights as I explained before they’re a self-advocacy group run by and for people with an intellectual disability who identify as LGBTI or Q.  The key aims of the project is to increase the group’s membership and it’s diversity.  Currently it’s made up predominately of male members but with one person who is transgender.  The group are looking at exploring the addition of hopefully getting women involved or it may well be that another group starts that are only for women.  That’s sort of going to be looked at.

The other things that we want to do with the group and are currently doing with the group is sort of organising meetings with key leaders and organisations in the LGBTIQ community.  Last year they actually met with Ro Allen and Jude Munro whose the Chair of the new Victorian Pride Centre.  They’ve developed up some great links.  They also met with Jenny Macklin as opposition spokesperson for disability.  So fantastic sort of stuff.  We’re also working with them to talk to the pride march organisers to get them right down the front so that they lead the pride march.  Whether that happens, we’re not sure but we’re working with them and they’re sort of lobbying for that to happen.  Also working with them to lobby the Pride Centre management about getting a permanent space for them.  Last year Jude Munro indicated that that may be a possibility so fantastic stuff.

We’re also working with them to build their public speaking capacity.  That will take some time and to explore sort of opportunities during mid-summer 2018 which is coming up really really shortly.  They’ve got now a stall at the carnival day I think on January 14th on Sunday.  If anyone is free come down to the Yarra to I think the Alexandra Gardens and they will be there handing out badges and having lots and lots of fun.  They’re also attending a two-day conference, the two days before that event as well.  Some fantastic stuff is happening.

With Deaf Blind Victorian the key aims of that project is to establish a small office in Ross House and that’s been done which is just fantastic.  Deaf Blind Victorians they were storing a whole lot of their information and resources in the able link upstairs, some at SARU and some at people’s homes in various suburbs around Melbourne.  Now they’ve got a place to meet, which is just fantastic.  The other thing they’ve got was the engagement of a support worker who had AUSLAN and tactile AUSLAN skills.  So we were able to work with them and engage somebody to work with them for the next eight nine months until the project finishes.  The support worker would just assist them with sort of presentations and looking at other funding sources for them.  The aims of the project is to actually run some more Deaf Blind forums for people who are deaf blind and that’s about sort of building a community getting out to extremely isolated people which most deaf blind people are.

The next group that we’re working with is New Wave, they’re down in Gippsland.  They’re a group that have been around for about six or seven years I think Sue, is that right?  Longer maybe, maybe about 10 years.  So they’ve been around for a long time they’re a fantastic group.  We were down in Moe on Friday and we’ve got them a support worker.  The project itself is a little behind but we’re now getting back on track, which is just fantastic.  This was about building the capacity within the group and getting new members, establishing a base from which to work.  They were situated with an advocacy organisation down there but had to move.  We’ve worked with DHHS down there who are great supporters of the group and they’re moving into a new office and getting that established over the next few weeks, which is really fantastic.

The other part of the project was actually working – New Wave do training and public speaking and get out quite a lot.  It was about redeveloping some of their resources to actually get to hard to reach individuals.  People with an intellectual disability an acquired brain injury who might be living in-group homes and to actually get out to them and talk to them about their rights and their opportunities with the NDIS.  Also opportunities for people to join the group that’s really important for them.

The last one not the least is All Abilities, which is a group, down in South West Victoria that Bec is part of.  The key aims of that project is to develop a new model of supporting sub regional self-advocacy groups in South West Victoria.  As Bec said the groups come from Hamilton, Portland, Terang and Warrnambool so there’s great distances for members to actually come to meet.  So this is looking at establishing as Bec said a smaller group and other ways of meeting whether that be through technology, whether it be through accessing some funds to get people to the meetings.  We’re not quite sure yet but it’s under way and it’s a fabulous opportunity to do a bit of a pilot and see how that works with maybe some other groups in regional Victoria.

So that’s about it from me and if you’ve got any questions please feel free, but what I’ll do now is I will hand over to Sue and maybe we can have questions at the end if that’s all right.  Thank you.

SUE SMITH, SARU:
Just waiting for my co presenter.  We’re going to talk about three projects.  I’ve got to thank Fran up front because meant to be Colin Hiscoe from Reinforce was meant to do some of this as well so at the last minute poor Fran has to step in for the three projects I’m talking about and cover all of them with me.

So first, I’m going to talk about the Australian Self Advocacy Project, which is funded through the National Disability Insurance Agency.  It’s come out of the realisation for self-advocacy in Victoria having had a self-advocacy resource unit, which has proven to strengthen self-advocacy increase the numbers.  But with the transition and listening to Mary’s talk, to the NDIS having a voice within the State Government is not necessarily going to be enough.

Groups around Australia really need to have a united voice at the national level.  But the other thing that has happened is around through the 80s self-advocacy was really strong in Australia and I’m just about to show a little video.  This is by way of introduction to it.  It actually arose in the early 70s, late 60s from Sweden, which so many things came from Sweden in that time, and self-advocacy was considered a civil rights movement particularly for people with intellectual disability.

So in the rest of the world self-advocacy groups are nearly 100% run by and for people with intellectual disabilities.  Victoria is quite unique in that we’re funded to support groups run by and for people with intellectual disabilities, acquired brain injury or with complex communication support needs.  An example of a group for that would be Deaf Blind Victorians.

Self-advocacy went through a boom in the 80s and in Australia; there was a national – People First which was a self-advocacy resource unit.  There was a peak People First Australia and then the 90s hit and it was decimated.  The Victorian Government response to that with the idea of ASARU but the rest of Australia which was our starting point was unknown really.

By way of an introduction, we just recently had the first national self-advocacy conference in 30 years in Melbourne and this was a little video we made to remember and recognise the work over the course of the 80s and into the 90s and current.

 

It’s a very proud history indeed and I would say in Victoria the work of the self-advocacy groups in the 80s really led the way in closing institutions, led the way in campaigning for easy English and accessible information.

Onto the project, the NDIA has funded the Australian Self Advocacy Project and it is about coming up with a model and a plan for setting up self-advocacy resource centres around Australia.  Now having said that so far that’s what the funding is for, a model and a plan.  On our grant agreement is when that goes in then they will look at it.  So there’s no commitment to funding such a model and I wouldn’t even like to hesitate if that will happen to make a guess.

The first thing we did is we had to find out what groups were out there because while Victoria is reasonably strong compared to the rest of Australia we knew it was quite decimated around Australia.  We found one group in Western Australia, and that’s not to say there’s not more but this is all we could find through lots of searches and contacts.  Three groups in South Australia, three groups in Tasmania, one group in Canberra, sort of two groups in Queensland.  NSW is a bit of an unknown they sort of kept popping up but I’d say about six.  So you can see it was quite different and again like Dean said across the board it’s about maybe linking with someone to be able to survive.  Very few groups are running in their own right or the ones that are are running out of someone’s house and with little bits and pieces.

The important thing then was to sort of work on those principles of making sure people have all the information in accessible ways.  The first step once we found the groups was to give them the information they needed to make a decision as to what the project was and whether they wanted to take part.  The response was pretty amazing.  We had in the end 70 organisations self-advocacy groups, all groups that would be interested or have been traditionally supporting self-advocacy such as DPOs, Advocacy Services, peak bodies, DANA.  Mary is one of the consultants on the project.  So it was really about providing lots of information about it and we also paid Paul Dunn to do a research paper at what’s happening with self-advocacy around the world now what’s happening around Australia and to come up with three models of how it could run as a starting point.  We’re really keen to do co-design and for us not to really have an opinion.  So they were a starting point, we will talk about the consultations later but they were open to change.  It was about finding the preferred modelling consultations around Australia.

The other important part was that the employment of members of groups from Victoria as co-workers on the project.  Bec was one Fran was the other because they have the knowledge.  They know as a member of a self-advocacy group what it is to have a self-advocacy resource unit that supports so they could speak to that.  Fran, when we first approached you to work you weren’t really quite aware, I thought we’d said but we obviously hadn’t about how you were going to work with us.

FRAN LEE:
Yeah, I was told I was going to Queensland so I just thought that was so unreal, I just couldn’t wait.  A bit after me and Sue got talking and she said you’ll be paid for this and I thought I couldn’t believe it.  I got the bonus of going there and plus being paid which I never dreamt of.  That was so good.

SUE SMITH:
Fran is going to talk a little bit about her role in the consultations later because it was quite significant really.

After getting the papers and having such a great response, I will just quickly talk about the three models proposed that we went out and consulted with.  Also it’s really important, we trialled the consultations with a self-advocacy group in Victoria and it was great.  They went too complicated so it was right from the start how can we do this right.

The three models that were presented were one that was called The Hub and Spoke model in which one organisation would tender or get funded, we’re not sure, it’s this mystical thing of some money coming from somewhere for it, to set up a hub, a self-advocacy national self-advocacy resource centres and spokes in each state.  So self-advocacy resource centres in each state and territory.  All the information about it talked about the pros and cons of that.  It really would be only one organisation.

The other model was called the Partnership Model which you see up there, in which there would be a national body but it would – that’s it.  So an organisation or a consortium can apply to get funding for that.  There would be independently run self-advocacy resource centres in each state or territory.  In each state and territory, it would be organisations in that state that would apply to run it so it wouldn’t be someone from Western Australia running one in NSW.

The other one which was what was called The Cheap and Nasty one which was there’d be one office with lots of workers that would fly out or do outreach work to the states.

As I thought, it would be the preferred model was the Partnership Model with each state and territory having key players in their state getting funding to set up and run, which made lots of sense because they’re on the ground and they know their Governments.  Listening to Mary’s talk, if you’re a NSW organisation that’s got the funding to run it you’ve got your links with the NSW Government and know the situation.  So that was approved by 82% as the preferred model.

So how we did it, I would say this was a co-design, it was a learning curve.  It was an okay co-design but what it really taught us which I will talk to at the end about the next part, which is setting up a national website next year is to up that and really look at what co-production is and the groups really have ownership of that and are receiving a significant part of the budget to develop things.

There was two parts the first consultations which I will then get Fran to talk about were face to face.  We met with everybody, all the key stakeholders that signed up the groups.  That was a way of building a relationship and we just listened, didn’t we Fran?  Fran did some great talking.  It was about not letting them think we’re coming in with an idea and this is what we want you to agree to.

They were fantastic consultations and I was just saying to Mary what amazed me in listening to Mary’s talk in a time when advocacy service and DPOs and that are losing funding I really expected, we were really sensitive talking before we went about they might be a bit who are you coming in and what’s this thing.  The generosity of spirit the absolute enthusiasm for it and the absolute across the board this is a must was quite surprising.  They contributed a lot to it.

Then we went back a second time and everyone we met individually we brought together in forums in each state.  So Fran, how did you find the consultations and your role in them?

FRAN LEE:
I really was surprised with the consultations.  For instance, we went to see SONAPS in Queensland and having the discussions there was really interesting.  She wanted to know everything about my journey everything about Brain Injury Matters.  It was really good to tell me story and my point of view.  I never expected they would care what I felt I had to say so that was really good.

SUE SMITH:
So part of it was explaining why self-advocacy matters.

FRAN LEE:
Yes, so why I think it matters so much to me is before I got involved in all of this I was alone and not well and at home and thinking that was the end of my life and that was the way it was going to be forever.  It gave me something to do which I really enjoy and I give a lot and I get a lot out of it too, which makes so much difference.

It was just great to see everyone over there and learn and listen to what was important to them and it really gave us a lot of ideas and help with the process.

SUE SMITH:
I remember Fran after the first meeting you walked out and said I thought they would listen to you and Sally I didn’t think they would listen to me.  In fact, most of the time people were much more interested in Fran talking as a self-advocate as a member of a group than us.  Don’t you think that?

FRAN LEE:
That’s what really blew my mind.  I just couldn’t believe that she would, they would care.  It was sort of like that all the consultations afterwards was the same thing.  They were so interested in finding out my journey and my role in advocacy, which was really nice.

SUE SMITH:
Even though 82% of people preferred the Partnership Model there was quite a lot of refinements that come out of the consultation.  One was a need for an establishment period before they’re set up so that groups could start to really understand what’s happening and have control of what’s happening.  That nothing about me without me because I don’t think inclusion is the right word.  It’s nothing about me without me principle came through loud and clear.

Members of self-advocacy groups decided they wanted to sit on the tender process deciding who would get this in the future if this does happen.  They wanted to be on every board and committee.  They wanted to be involved in selecting staff.  They wanted to be informing the policies.    It was so strong, Fran it was we should be there every step of the way.

An establishment period gives time for the groups to get up to speed, to not just have this – I mean the SARU which was fantastic but the thing went out the SAB consortium that runs SARU which is Brain Injury Matters, Reinforce, AMIDA and START got it and we just started.  But there needed to be this period before where the groups were taken on that journey and felt they had control of that.

So the need for an establishment period was very clear.  The funding levels was tricky because most people said it can’t be done bitsy.  Self-advocacy was so strong in the 80s and was destroyed so sort of terribly in the 90s that it has to be on going funding, it has to be a real commitment and it has to be the level that needs to be sustainable.

Also part of the consultations we were going to organisations that were involved with Aboriginal Torres Strait Islanders, involved with people from poor backgrounds and people who were deaf blind.  The depth of what was required there to bring self-advocacy in was really complex.  You need that commitment.

I remember Damian Griffiths from First Peoples Disability Network, he said something that I found quite incredible.  He said many indigenous people with intellectual disability or acquired brain injury are quite isolated in their community.  Often they’re in-group homes with people that are not from that background.  What he said is he thought self-advocacy groups had the potential to reengage people in their culture and their community which I found such a powerful statement.  I never ever thought of self-advocacy groups having that but to do it again requires a real commitment to the funding and it can’t just be funded for three years and see you later because they’ve been through that before.

The other thing was about who can apply so it had to be people with – organisations, this is from the consultations with people with disabilities on their boards, the committees.  It couldn’t be service providers, it had to be organisations and this really came out from a lot of the groups and the key stakeholders, who run using human rights principles but a lot of the members of the groups, they have to show that they do.  It’s not enough to have a paragraph in your mission statement you have to demonstrate that you’re actually doing that.  These were the criteria and exchanges to the original partnership model that made it quite rich.

The next thing, the most important thing that we just had on the 26th October was as I mentioned, the first time we had a national – there was a national self-advocacy conference in 30 years.  It was remarkable and Fran, what did you like about the conference and then I’m going to give you a hoy Bec.

FRAN LEE:
I thought the conference was great.  It was so good catching up with everyone I’d met from Queensland that came over to Melbourne.  Just seeing everyone how passionate they were it was a really good day.  They had some wonderful guest speakers and I got a lot of out that.  I think everyone enjoyed the socialising part of it too.  One of the best parts of the day was when it finished and we went to the pub.  That was really good everyone got together and had a really good time.

Also, after the pub we all stayed in the same hotel so afterwards everyone kind of got together and were talking about their journeys and what had happened to them along the way and all that stuff.  It was really nice.  It was really good.

SUE SMITH:
Bec, sorry to just spring it on you, what did you find about the conference for you?

BEC BIDDLE:
The conference me I quite really enjoyed it.  I took most of the photos and videos but it was great seeing everyone come along and seeing the guys from NSW.  Just catching up with everyone.  Listening to stories and stuff, I really enjoyed it.

SUE SMITH:
The conference was also again using those principles of co-design.  So the two people to coordinate the conference were Peter Ferguson who is the President of Brain Injury Matters and Colin Hiscoe who is with Reinforce.  They were the conference coordinators, they settled straight away the key note speakers needed to be members of self-advocacy groups and in fact, they were.  And what two speeches they were.  They were like rallying speeches back to the days of the civil rights movement really.  They coordinated the whole event.

At the end of it, it was just sort of an open mic about people to make comments and I still get a bit emotional.  A lot of people got up and said this is the best thing I’ve done in my life ever.  That was really great, you felt that’s great we succeeded in doing a great conference and then it just – it quite overwhelmed me if this is the best thing in your life what is that saying.  It’s just yeah, yin and yang thing.

Part of the conference too they did brainstorming about how to set up a self-advocacy network, national self-advocacy network and I guess there’s thinking too if the Australian Self Advocacy Project doesn’t get funding how can they do that on minimal or no funding.  Great ideas came out of that.

The next step is we got more funding to develop a website, a national self-advocacy website, which is great.  But I think most of you would know there is a limit to websites.  What we’re going to try and do we’re going back, as I said it’s really a chance to get the groups in each state to start working together.  There will be money for them to develop content, to test it, do the design of it.  It’s really a chance to do that co-production process and get people actively involved in making it theirs.  So really, it’s about an engagement thing and the website is great but I think the process of development will be really important and Fran you’re going to be involved in the consultations again.

FRAN LEE:
I am that’s so exciting.  When I first had my brain injury, I wouldn’t even go outside.  I wouldn’t even get to the letterbox.  I was so – my body it was like being born again.  I felt like a different person.  I just – I couldn’t walk at that stage or talk.  It was really really hard and to get involved in this just gave me back so much.  It’s such an inspiration and so much joy I guess.

I think it’s helped advocacy really saved my life because being that way I was kind of on the border of a nursing home.  My vision was I will probably end up there, in there and dying, just being so bored and just so depressed.  But this everything with the accepting and having to get to go to Queensland and Darwin coming up is so exciting.

SUE SMITH:
Now I’ve realised I’ve done what I need to do and bang on too much, we’ve got five minutes each for the next two projects.  I hope you don’t mind if we speed through.

The one thing that Fran and Bec did have to put up with is I have a severe phobia of flying.  I had to do 29 return flights in a six-month period and I’m not fun to travel with really on a plane.

I’m very quickly going to go through the Voice at the table.  This is a project, had been a passion of mine.  Years ago, I was involved with the Breast Cancer Network Australia and they had started this thing called A Seat at the Table for women who had breast cancer sitting on research committees and hospital and medical committees.  The two women that founded Breast Cancer Network Australia went along to a meeting with doctors and surgeons and this won’t surprise you having been in the medical system, they were oh, women with breast cancer what do we do with them.

They came up with this project called A Seat at the Table which was training women with breast cancer to have the skills and the knowledge and what to expect to sit on boards and committees.  It was a huge success and for years, I thought I think this has real potential particularly for people with cognitive disabilities.  I did change the name slightly to A Voice at the Table, to set up a project and the NDIA funded it initially, to increase the number of people with cognitive disabilities on boards and committees and inputting into policies and program design.  Because it’s really across the board I think Bec you were involved and Fran, that’s the voice least heard yet so many of the decisions made impact on people’s lives.

There was two parts one was created quite extensive training which Bec and Fran did around went over six days, sitting on boards and committees, how to choose, how do advise, what to expect, what your rights are.  Lots of great guest speakers Mary was one, Andrea Coote the former parliamentary secretary on disability was another.  The other part was it’s okay to talk to people about learning about how to do that but then if organisations don’t run meetings that are inclusive well what’s the point.  The other part was developing tips and guidelines for organisations about how to run fully inclusive meetings.

Resources developed for that were tip sheets for the organisations.  First of all, to my steering committee I took a big 41-page book and their response was that will be a dust gatherer, you better do some tip sheets.  So this is the shorter version.  Then there’s a big important one about how the chair and all different members of the committees can make the meetings more inclusive of everyone.

The interesting thing we’ve trialled them and a lot of the committees said this really isn’t to do anything with people with cognitive disabilities, or people with disabilities, it’s just good meeting practice that everyone should have.  Then there was the training.  I’m just going to ask Bec to talk a little bit, you did Voice at the Table and what is your experience with that.

BEC BIDDLE:
I thought it sounds a bit boring, six days and stuff but it was really good.  I really got a lot out of it.  They were great speakers and really made me not judge myself so harshly and I had never spoken in public before doing that.  So since doing the Voice at the Table training I have spoken in public many times.  It just gave me the tips and the knowledge to knowing how to talk and deliver things and just have the confidence.

SUE SMITH:
After the first lot of training, you went to a meeting with the NDIA with David Bowen there and you’ve got a great story about the very first tip you used at that meeting.

BEC BIDDLE:
Yeah, I was quite nervous about that meeting and talking in front of NDIA and stuff.  So I remember the tip that I was told about looking for someone smiling and nodding and it was actually David that was doing it and I was talking to him so that was a bonus.  He just made it so much easier to get through.  I mean if everyone’s sort of looking at you like this it kind of makes you think oh god I’m doing terrible.  But he really made it seem better.

SUE SMITH:
That’s a very quick wrap up of the Voice at the Table.  We’ve got another lot of funding for a project we’re working on now around Voice at the Table and Civic Participation.  It’s working with the Office of Disability and identifying a committee within Government that’s not within any part of disability, a part of Government that might not have come across this before and developing a web page for Governments and others about how to do that.

Also, trying to get the word out there and spread the word that you’ve got to include people with intellectual disability and acquired brain injury, cognitive disability on these committees.  Hopefully it will work really well and they will advise it to everyone else.

Then we have another lot of funding to basically try and run the training but also to find organisations and just a call out to the advocacy organisations there, who might be interested in running the training and developing, working with us to develop some sort of train the trainer thing, so it’s not just depended on SARU, the training is out there for others to use.

I think VSAD is going to have to hit the cutting room floor, I think we’ve run out of time.  We might be able to do it at another one.  I’m sorry for VSAD, Bec and Victoria Self Advocacy Network but we’ve run out of time.

MELISSA HALE:
Thank you very much everyone it’s really exciting to see some of the amazing projects you guys are doing, really good.