Solingen 93

Domestic Violence and Abuse

Visibility Disability Research Challenges and Co Production

my colleague Grainne Collins who unfortunately
isn’t here today. I am a little bit nervous with all these technical things that the whole
thing is going to blow up, hopefully not. We will just go on. So today’s presentation isn’t about the importance
of including people with intellectual disabilities in research because I feel that case has already
been conclusively established and we all know about the importance of giving people opportunities
to be active citizens, to have a voice, to exercise their autonomy, and so on. We know
that research that includes people that reaches out or embraces people with intellectual disability
will give us better research, better data, a wider variety of perspective. So that’s
not what I am here for today, because you already know that. What I am here for today is to say that it’s
recently got a lot harder to do. It was already a bit of a mind field in terms of legal ethical
and methodological problems, but those challenges have increased in recent times. I am going
to frame my presentation this morning around a project that I am working on. It makes it
a little easier if we use a practical example to see what the difficulties are. I am going
to look in particular at the impact of the health research regulations 2018 which is
a statutory instrument that came in and that flowed from the Data Protection Act. I am
going to look and talk about ‑‑ really I suppose put it out to you in terms of what
the future implications might be for research with people with intellectual disability. The moving in study, it’s a national study,
a multi site study which is something that we will come back to later because it’s one
of the issues that presents a challenge. It sort of came out of major transformative changes
that were taking place in the disability sector, in the sector of disability services. So it
fold on from changes ‑‑ followed on from changes that came from the transforming lives
programme, and the desire to essentially look at these shifts that were happening in the
service provision and see if we could establish whether or not they were achieving benefits
for people in terms of improved outcomes for them and also how much they were costing,
because there was very little data available about both of those. So our target population were adults receiving
disability services. We didn’t unfortunately or weren’t able to do what Eithne referred
to earlier, we weren’t able to do a random sample so our sample strategy was purposeful
and we had to negotiate with many gatekeepers, so it continues to be a slow congruous process
in terms of recruiting the participants. We wanted to get as broad a spectrum of participants
as possible, we wanted adults with all kinds of disabilities and all levels of disabilities.
But the bulk of our participants are adults with intellectual disabilities. When you think
about it that makes sense because the bulk of the services within the disability sector
are provided to adults with intellectual disabilities. Our target sample size is 600, and about a
quarter of that is comprised of people who were living in priority sites for decongregation.
These were adults, all of the priority sites were homes to people with intellectual disabilities.
They also quite often had physical and sensory disabilities as well. These were adults living
in congregated sites that were expected to transition to the community reasonably quickly.
And we wanted to include them at two points in our studies: once before they moved and
once after they moved. But the profile of these adults, the participants within our
study, really this particular group, this particular strand within our study was really
a very, very vulnerable group with very high support needs and it sort of replicates the
findings of the value for money report which again pointed out the ‑‑ that this was
the residents within the congregated settings very high levels of support needs, high levels
of intellectual disability. We adopted a mixed method approach. We are using a quality of
life tool, a tool to assess the support needs and we are using the observation of interviewers,
a mixture of quantitative and qualitative methods. As all of you are involved in research
will know, informed consent is a fundamental underpinning of research, it’s one of the
fundamental principles. This is sort of taken for granted that participation is dependent
upon consent that is voluntarily given and that is fully informed. To do that with people
with intellectual disabilities presents challenges. So we set about commissioning easy read documentation
for the project. So we have easy read information sheets, easy read consent forms. But despite our efforts essentially this material
continues to be not accessible to people with severe and profound intellectual disabilities.
Essentially those participants who had that level of intellectual disability were not
able to give us informed consent, were not able to give consent directly, so we sought
proxy consent from family members or support staff. If you like resorting to using a proxy consent
is a compromise. It’s a compromise that we had to make. We had to decide do we really
on proxy consents or do we not include these people within our study. When you think that
these are the most vulnerable group of participants within our study, it didn’t make a lot of
sense to us to exclude them. So we opted for the decision to go with proxy consent. Now,
again, in terms of the proxy consentor, the ideal is probably a close family relative.
But again, if I bring you back to those people that were in, for example, the congregated
settings, some of them for half a century, with very limited familial contact at this
point, parents deceased and often little or no family contact, and I am not blaming anybody
here, because these people were moved from all over the country to these large institutional
settings but the reality is that the social settings of these people in residential settings
don’t replicate those of people within the general population. They’re very limited and
so the people who often know them best are in fact their support workers. We again if
you like made a compromise and decided that it was appropriate to accept proxy consent
from support workers. Because it was a multi site research project,
we had to apply and secure multiple ethical approval from lots of different research ethics
committees. Again, the amount of work that goes into submitting the application and securing
the approval cannot be underestimated. Having said that, we did get a great deal of comfort
from the fact that our approach was endorsed by those ethical approval committees. Although
our proxy consentors if you like was this compromise that we had reached, and we knew
that they did not necessarily have the legal authority to provide us with the consent,
we were assured of our ethical position on the approach we had adopted. So in going to all of these committees, I
suppose we found it quite a difficult and frustrating process. We would go to committee
A and they said we love your documentation, but we would like you to change the wording
on point five page 2. We would go to committee B and they’d want us to change the wording
on page 4, point three. And so on. And some of the issues were absolutely valid and probably
helped us and guided us in the approach that we adopted. But some of the issues that were
raised were more idiosyncratic sort of points of emphasis that people wanted to bring out
rather that be fundamental to the actual research. So we were carrying on with our research and
everything was going along reasonably smoothly and then we had the data protection legislation
which came out last year. And that was fine. We probably thought that it was relatively
peripheral to us and we probably thought that we pretty much had it sewn up in terms of
all of our procedures around it. But we were wrong. Because it was followed fairly quickly
by the health research regulations which kind of went off a bit like a bomb in the health
research arena. Certainly we didn’t see it coming anyway.
In case some of you aren’t familiar with it, I will go through it in a little bit more
detail. First of all, it flowed from the Data Protection Act, specifically from section
36 of the Data Protection Act. And it’s the application of GDPR to personal data for health
research. Within the regulations, the data protection regulations, health data is a special
category or sensitive data, and it’s very strictly regulated. The regulations that came
in under the statutory instrument, the health research regulations, they were optional safe
guards that the Irish government brought in. They are not standard throughout all research.
But the definition of health research that’s set out there encompasses public health and
social care research. Disability services is social care and we
are wrapped up in health research. We wriggled a lot when this came out but we couldn’t get
away from it, we are part of this. The other thing is that the regulations apply to projects
in train. So when it came out and we started looking
at it, we couldn’t find any references to lack of capacity or what the impact was for
us. It said that explicit consent was the default position. It was an absolute requirement
if you were conducting health research. And if you didn’t have explicit consent, you had
to make an application to the consent regulation committee and it made it clear it was envisioned
it would only be in exceptional circumstances that that would happen. A criteria for application is that you have
to establish that the research is of significant public interest. So for us, when we started
to review the impact, we had to stop our fieldwork. We looked at amending our project information.
We had to include all kinds of stuff like naming our data protection officer, naming
the data controller, including information that was essentially making our material less
accessible, but we were trying to comply with the data protection legislation. We got legal
advice and eventually had to accept that we were going to have to apply to the health
declaration committee. We got a conditional declaration, and we have
started back on our fieldwork. But we have lost months in that time. What does it mean
for everybody else? It was already difficult to secure ethical approval for research for
people with intellectual disability who are immediately flagged as being vulnerable by
ethical ‑‑ research ethics approval processes. Researchers are going to have to factor in
whether or not they have the resources to go down this road; whether or not they’re
going to actually include people who lack the capacity to give informed consent. Is
that going to people that they’re going to have to apply to the health research consent
declaration committee and all that means is time and resources. We decided that when the
committee was established that we would seek representation on the committee and our head
of policy is a member of that committee now. So at least there is a voice at the table. Into the future, there is ‑‑ it’s still
uncertain how the committee and how the regulations which were issued by the Department of Health,
how that’s going to align with the assisted decision‑making capacity act, which doesn’t
reference research and it seems likely taste that proxy consentors, staff members will
not be included. The last point is just in conclusion, people
with severe and profound intellectual disability are largely invisible and largely voiceless,
so I think that some of the measures that are designed to protect people, so within
the data protection legislation, they can have perverse and unintended consequences
and these need to be highlighted and I think that there needs to be more of a conversation
about the impacts of the changes that have been introduced recently. So thank you. (APPLAUSE)
next we have Cliona de Bhailís.>>: Today I am going to tell you a bit about
my Ph.D. research project and how I plan to involve young people with disabilities in
conducting it. I will start with giving an overview of what my project is or what I hope
it will be at the very least before telling you about what participation means and how
that works within the CRPD. My plans for incorporating that within my Ph.D. project, I am at a very
early stage but I have great ideas I hope, how they’ll figure out we will see and some
of the benefits and challenges that I have come across so far. My Ph.D. research is looking at young people
with intellectual disabilities, looking at young people in Ireland between 15 and 20.
Article 12 of the CRPD talks about people with disabilities having the same right to
make decisions and it also looks that people may want support to make those decisions.
So a decision which has a legal consequence could be signing a contract, giving consent
for something. There can be wide‑ranging in effect, and often maybe we don’t think
that a decision we are making has a legal consequence all the time. But it impacts all
of those stages. Some people may want support to make these
decisions and that support and when people are making decisions article 12 says it’s
very important that it focuses on a person’s will and preferences, likes and dislikes,
overall view for life, in contrast to what’s happening at the moment and previously which
is very much somebody else maybe making a decision for somebody in their best interest.
We think this is the best idea for you, you may not like it, but it’s probably best so
we will go ahead with it. It’s important to note even though a lot of
these consequences, most contract happen when you are over 18. Children have the right to
express their will and preferences on an equal basis with others. We discover things at a
young age, it often happens at ages where you figure these things out, try stuff, fail,
go again. It’s important to have this research to figure out how people in Ireland are negotiating
those paths, are they using support? Participation in the CRPD, I worked as a research
assistant on the voices project mentioned earlier. When I was designing this Ph.D.,
it was second nature, of course you would have people involved. But it spans back to
the drafting of the CRPD, it goes back to the very crafting of it and that nothing about
us without us mantra that you saw in the title of my presentation. It goes back to people
coming around a table and saying this is we know best, what works for us and working together
to achieve that, not without a good through consequences, but they still came together
and said well even if we don’t all agree on everything, we agree on these things and this
is what’s most important. Children were brought into some of these sessions
but on a very limited basis and they were brought in to present their brief for one
of the later ones. A few children from different organisations were brought forward and they
gave their views on how they felt their rights were being impinged and how their rights were
important. Mostly they were represented through organisations. That mantra of nothing about us without us,
the CRPD has that at its very core and it wants it to bring it forward when we are drafting
new legislation, when we are looking at how we are going to make things successful and
doing any of this type of work. I think it’s really important to have that at the heart
of it. They’ve published a general comment on it. The first general comment that the
CRPD economy published was on article 12. It has since published a range of ones, including
on participation. It highlights key issues and explains them in more detail, this is
the committee’s position. So what might be in an article in the convention, a couple
of lines that says people with disabilities have the right to participate, have the right
to make decisions on an equal basis with others, a general comment is where they flesh this
out in more detail and say this is how and why and this is our position. General comment number 7s specifically highlights
that children with disabilities are themselves best placed to express their own requirements
and experiences and are necessary in developing appropriate legislations and conventions.
If we are doing research, I think it’s important that we carry this on. It’s of course a very
emerging methodology whether it’s disability human rights research or children’s research
or something that’s hopefully going to take over more, but you can see a lot more of it
across different projects. How am I going to do it? I have been asking
myself this for a while. What you will see on the screen or the presentation behind me
is some of the graphics that I used to explain how I would hope my advisory group would work
at a recent training I had. You can see my plans for participation, choosing a research
topic, a literature review and data collection. I have chosen my research topic because the
nature of the funding streams and sources in applying for a Ph.D. meant I didn’t have
the luxury of spending ages of working with people to come up with this idea. If I was
doing it again, I think I would do it differently and maybe approach different organisations.
There is already some learning in that I think. Then I have conducted some literature review
and I am still doing some of that and I am moving on to the more data collection phase
now soon. I have recruited a few people to be on an Advisory Committee and that’s the
first method of participation. I am calling it an Advisory Committee, but they might even
move into the co research analysing research with me stage. I have recruited three young
people aged between 17 and 19 or around that with disabilities, and they’ve a range of
cross disability or impairment on that committee, all based in Ireland, in the West of Ireland,
to give me their views on okay this would be a good data collection method, this wouldn’t
be, we think this is the way you should go with this or we want to be very involved in
the data analysis phase. When we gather the data and once they give me their views on
that and work together to design whether they be interview questions or folk to us groups,
protocols or surveys, whatever we end up deciding together that we go on and analysis those
results together. As you will see from the three heads alongside
my picture on the graphic, there will be elements I think because of the nature of the Ph.D.
will have to be on me, so I will have to write up the findings myself, the overall final
report in terms of that final document is on my head. That’s my job. They’re loving
the idea that they don’t have to get involved in that level of homework. But the other elements
in terms of disseminating the results and making it accessible for other young people
with disabilities or service providers or people supporting, those are areas that I
feel and the committee have agreed that they’re interested in being involved in when we get
there. Some of the benefits that I have seen and
I am not going to spend too long on this because I think we have talked about it an awful lot
today, discussed it a lot and we have gone through the different pros of doing it. It
was very second nature, why wouldn’t they be involved. I didn’t have to be convinced
of this. My sister is around the same age of some of the people I have been recruiting
and she already thinks I am ancient, so okay, I need somebody from this cohort to learn
about their ideas. But also the different levels of lived experience and Robbie alluded
to this this morning. Everybody even within disability, it’s not one homogeneous group,
we all have our own lived experience. So I bring my lived experience as a person with
a physical disability to the table but that doesn’t necessarily mean that I understand
intellectual disability, autism, experience with the mental health services, I in of these
things that you are working with. I was trying to get all those different perspectives around
the table. I got a good mix that I hope will share their opinions. Also research experience,
I don’t know if this is a challenge or a benefit to be honest, but it’s definitely made me
think differently, so the group that I have already collected have a varying levels of
research experience, some who have done research before, participated in these types of groups,
conducted their own research and done lots of training and others who are completely
new to this, don’t know anything about the CRPD or the models or anything, and that was
fine, that was part of my criteria, just that you were interested in disability and human
rights generally and that you wanted to be here, that was my main criteria. That’s made me question how I am explaining
things, if I am giving them a crash course in the CRPD, so they know what I am talking
about, why am I saying it that way and why are we interpreting it that way? I think that’s
already benefiting the probably because it’s making me question things, going why, how
can I make this more accessible. Finally the challenges, you will see I have
to date in brackets on the slide. I feel there is more coming. At the moment I have gone
through the ethical approval phase. I went through that phase for like a broad idea of
what I might do for data collection and also before I started recruiting my Advisory Committee.
That structure is very, very much geared I felt towards research participants. So asking
why people wouldn’t be anonymous, asking what the risks were, why are you working with this
age cohort and these groups, and very focused on this inherent vulnerability that seems
to be in people with disabilities. And trying to convince and again, I suppose I was very
‑‑ Eleanor is supervising this project and I was very lucky to have had her experience,
going no, this is how we justify why we are working with this, it is doable and being
able to say I am going to work with people who are under 18 who have additional support
needs but this is how and why and I will make sure I am getting appropriate consent. It was also very important for me that the
advisory group would be named and trying to justify that as well because they were some
were possibly under 18. I felt if you were giving your time and energy and expertise
to this project, if I present with you, work with you, I want to be able to credit your
work, to be able to say that they did this and this is your time and energy. And not just their parents consent, it was
important for me that they also consented to this project. If they didn’t consent but
their parents did and said this would be good for you, in line with article 12 and the idea
that we are not doing stuff for people’s best interests, and what others think are best
for them, that we are working on stuff, and that they wanted to be involved. Finally the recruitment. I think I was probably
also guilty of going to some of the usual suspects when I started this process of drawing
on some CDOP and going back to the same organisations to go do you have people within these age
groups? What I found with a lot of the organisations that I went to that they didn’t. They had
lots of self advocates and activists and other organisations had people who were older, even
as adults, if he with look at the 18 to 20 bracket, they were even older than that. Then what I struggled with was when I went
to the more “mainstream” if that other organisations, how are you going well we don’t have anyone
with a disability. And then I give them a very broad definition of disability, well
I don’t necessarily just mean physical disability, I mean people with vision impairments, people
who are deaf. Oh, right, okay, yeah, we have them. And then they go to their groups. This
is this moment of having to say that you are really going a cross disability approach and
trying to find these people within that. I was aiming for five or six people because
I knew people would drop out, and maybe not be able to attend meetings and I ended up
with three, but they’re three very committed and enthusiastic people. It also meant having to go through lots of
parents and gatekeepers, challenging the idea of parents and people coming forward going
I really want this person on your committee. Does the person want to be on the committee
and trying to go back to that approach. By contrast people giving the idea are you sure
you want them, are you sure now they’d be able for it, that that would be something
they’d be good at. Well they have the lived experience, they have their own knowledge,
and we will work from that within our grouping. Those are the main things I wanted to highlight
in this section and I am sure there may be some other challenges ahead of me but I am
looking forward to working through those challenges, even the accessibility of the data collection
elements with the advisory group and working together with them to conduct this research.
(APPLAUSE).>>: Now we have the Irish research network
or the inclusive research network, sorry.>>: Okay, welcome to the community based project
by the inclusive research network. This is our latest project by the inclusive research
network and I would like to introduce Joan Body and Nancy Leddin, my two colleagues here.
So I will hand over to Joan now.>>: We are doctors and nurses project and
what we have to say. Who we are. The inclusive research network is a group of people with
learning disabilities and supporters from service and university who come together to
talk about research. Our partners include University of Limerick, Trinity College Dublin
and the national federation of service providers.>>: Reasons for doing the project: people
with learning disabilities suffer health inequalities and have poorer health than most others. They
face many barriers to healthcare access including physical, societal and language issues. A
big Irish study about aging found that one in three adults with learning disability have
trouble making themselves understood when speaking with health professionals. Reasons for doing doctors and nurse project:
there is a small amount of research about what it is like for people with learning disabilities
to visit the doctor. Most studies are about what doctors, family or support staff have
to say. Only two of these were projects led by self advocates.
>>: Our research questions: what is it like to people with intellectual disability to
go to the doctor in Ireland?>>: Hearing stories in the focus groups, we
agreed that the focus group were the best way to meet the project ‑‑ meet the project
aims. We agreed on the questions to ask. We used many pictures to get people talking.
>>: Workshops focus groups, university supporters designed and led four workshops to support
us to co lead a focus group. Role play gave people a chance to practice or learn to lead
focus groups.>>: Co lead focus groups 17IRN members and
nine supporters. Focus groups.>>: Who took part? 11 focus group held in
2017 and 19 with a total of 66 people with learning disabilities. 36 men, 30 women took
part. The average age was 46. 11 supporters took part.
>>: How we worked on the story so far? Co leaders wrote up focus group notes. Two team
members read notes, then met up by Skype to colour code the notes. Working group met by
Skype to group the colour coded notes ideas together. Working group agreed on which idea
was best.>>: Our three key points: one, feeling lucky
after taking charge of my health. Making doctors visit better.
>>: Feeling looked after. Easy committees, having ‑‑ access, having easy access with
the wheelchair. Feeling welcome. Girls at reception give the person a big welcome and
a big goodbye on the way out. Feeling at ease. The doctor was lovely, he didn’t speak to
the staff, he spoke to me.>>: Taking charge of my health, booking appointments,
you are independent and you want to look after the doctor’s appointment yourself. Speaking
up, always update the doctor yourself about what is happening for you. Managing my health
details. I take my own file in.>>: Top talking choice: what helps? Talking
easy. I know the doctor is very well so I just go in and talk to him.
>>: Support, I prefer to go in on my own, but I sometimes need support when I need it.
>>: Knowing your rights.>>: You have the right to say in the doctor’s
office when he or she explains bad news to your staff or family.
>>: Taking charge, what gets in the way? Feeling unsure, feeling afraid to talk up, might forget
what was said, not knowing the doctor, not sure why you are seeing the doctor. I am just
afraid I would forget what they say or not understand. No choice. Not choosing our doctor.
I am not allowed to call doctor, only staff can. Disrespect, not respecting privacy, doctor
not talking to person. One woman said, I had to go to the doctor recently, I only had my
trousers and bra on and doctor only pulled the curtain a bit, I felt uncomfortable for
me.>>: Three, making visits better before visit.
>>: Making appointments, less waiting time, better waiting room.
>>: Be honest for yourself, speak up and say if you can’t make the appointment when you
have something else on.>>: During visit.
>>: Easily read notes, take away with you.>>: If I can’t read the doctor’s writing,
you can ask him to write it clearly.>>: Closing comments: people with learning disabilities
want to be able to talk easy to their doctors. People want to have easy to read handout about
their health to take away after a doctor’s visit. We have the right to know what is happening
to our bodies and feel looked after.>>: And just to wrap up, if you want any additional
information, you can contact me, I am the IRN secretary or on our web page. Thank you
very much for hearing us today. (APPLAUSE).
>>: Thank you very much for the inclusive research network. Now we have Inclusion Ireland.
>>: Hello everyone, before my colleagues carry on with the presentation, I just wanted to
say a few words about the stories that we collected. As the title of our research suggests,
we collected 19 stories of social inclusion. Those stories, some of them are told in video
format and nominate in narrative and pictures. We had intended to show you a couple of videos
this morning but as we all witnessed we had some technical problems and we nearly broke
the system, so unfortunately we wouldn’t be able to show you the videos. I would urge
you to go to the Inclusion Ireland website and have a look at those stories. The videos
wasn’t an after thought, it was one of the aims of our project, was to share the findings
of this research in a way that’s accessible to people with disabilities. A we really want
this research to be a tool for change. We wanted the participants who took part in the
research to be actually able to access the findings in the research they took part in,
we wanted people with intellectual disabilities to take it up and say this is a tool that
we can use and share. Once again I would ask people to have a look. Apologies we don’t
have videos for you today but please go to the website and have a look at those stories.
I will hand over to my colleague.>>: People with disabilities don’t always
feel included in society and in the community in Ireland. We know that people with disabilities
are more likely to experience poverty. They’re less likely to have a job. They are less likely
to live in a home that they choose with people they choose, such as their friends, boyfriends,
girlfriends, husbands or wives. We choose to tell these stories because article 19 of
the UN Convention on the Rights of People with Disabilities tells us about the right
to live independently and be included in the community.
>>: Social inclusion, so what do we mean by social inclusion? It’s about a sense of belonging
and connection to your community. It’s about contributing to your community. It’s about
the choice to live your own life. It’s about the person themselves directing their own
life and making choices about that you are own life. It’s about taking part, not just
being present. Our advisory group helped us to decide what social inclusion is. Our advisory
group was a diverse group with a wide range of different experiences and knowledge in
the area of disability.>>: 19 people ‑‑ so what did we do? We
recruited 19 people with a wide range of life experience. We carried out face‑to‑face
interviews with 19 participants. Some had supporters present at their request. The interviews
were recorded and transcribed. We analysed all the interviews, we looked
up what was the same and what was different in people’s stories.
>>: Nothing about us, without us. So how did we make this research inclusive? The research
team was made up of a range of people with different experiences of disability, of research
and of influencing post. We worked together as a diverse team and all the different parts
of the research. The research design, the interviews and the analysis. We interviewed
people with disabilities themselves, not their supporters, because we wanted to hear the
stories from the people themselves. We made the decision to share the findings in an accessible
way through videos, written stories, pictures and an easy to read report. These are all
available on the Inclusion Ireland website. Making information available to people with
disabilities in an accessible way is a key principle of the UN convention on the rights
of persons with disabilities.>>: About the participants: at the first group
of participants, 10 men and nine women aged between 19 and 62 years. Participants were
from farms, villages, towns, cities in Ireland. They had a wide range of life experience,
interests and ambitions, just as in the wider population. Our part pants had intellectual
disability, 17 had an additional disability. Participants had a wide range of support needs.
>>: The more information about the participants. 12 participants were in mainstream work. Ten
were living in independent settings. Eight were taking part in education in mainstream
settings. Three of these were in mainstream accredited education and five in courses for
people with disabilities. Nine were taking part in mainstream community activities such
as knitting groups, choirs and bands or Tidy Towns groups. Most participants maintained
self direct the relationships and friendships.>>: We will present what we learned under
three headings: the value of social inclusion; what makes social inclusion happen and what
good support looks like. People would see you, I am a person who is not hidden away
contributing to society Roy told us. Tom told us, when I am working, I go for lunch in Doyle’s
two days a week, I have made good friends there. This shows that when people are included
in one way, for example, through work, this leads to social inclusion in other ways such
as making new friendships. It has a ripple effect. Alan is in full‑time education, told us
every disability will be following me to that group because I am Luke a pioneer. Participants
felt that by being included they were making it easier for other people to be included.
>>: What made social inclusion happen? Mary told us really use their interest to make
their life better. This shows the importance of focusing on the individual as a person
and not on the disability. Karen lobbied everyone she met including HIQA
and wrote to everyone telling them that she wanted a home. This shows that people’s own
determination and self advocacy skills made social inclusion happen. Christine told us,
I love living here because I am near all the services and I can get the bus to wherever
she wanted to go. Social inclusion can’t happen unless mainstream places and spaces are accessible
to people with disabilities. Alan told us, they can help you make your
dreams come true, good support really made social inclusion happen. Margaret will tell
you more about what good support looks like.>>: Good support was based on respectful relationships,
or it’s based on common sense of humanity through a relationship and shared interests.
Good support started with identifying the person’s goal, strengths and interests. Good
support helped to change things in the community so that participants could take part. Good
support was smart at finding opportunities for work, education, and community activities.
Good support advocated for the participants to be included and to vet the support they
needed.>>: What does this mean for policy and practice?
Understanding social inclusion, social inclusion is not defined in policy in Ireland. So does
policy take into account what social inclusion means for people with intellectual disabilities?
>>: Decision‑making supports participants said choice and control was important. It’s
very important to make this happen, but they have been very slow to be put in place.
>>: Participation in decision‑making: leadership and self advocacy skills are very important
to achieving a socially included life. There needs to be more training and more opportunities
for leadership and involvement in decision‑making.>>: Self supports and visualise supports are
important to achieve socially included life but many services are still one size fits
all.>>: The porters need to change their thinking
about people with disabilities, it’s not care that people need, it’s support to live their
own lives.>>: Services need to be more accessible and
inclusive of people with disabilities. They need to welcome difference. This doesn’t mean
just having a ramp. It means having information that everyone can understand and that people
can have the same opportunities as everyone else.
>>: Some recommendations for policy and practice: a plan to support people with relationships,
self advocacy and other types of advocacy should be included in the national disability
inclusion strategy. There needs to be decision‑making supports and resources for decision support
therapists. There needs to be supports for self advocacy and leadership, this includes
putting the HSE’s plan for participation in decision‑making into action.
>>: We need person centred support. Disability services should separate the funding for each
person using the service. This would help people to choose the supports that are right
for them. We need accessible housing as well as support. The department of housing and
the Department of Health should work together on this. Organisations should adjust barriers
to accessing services. (APPLAUSE).>>: Thank you so much to our presenters for
highlighting the challenges that they face and also the ways in which they’re incorporating
the nothing about us without us mantra. Because we had a late start, I am going to quickly
open the floor to questions.

Cesar Sullivan

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