>> JOANN STARKS: Our next session will be
with Katherine McDonald who is the she's also
a professor of public health in the college
of fort and human dynamic and the faculty
with the Burton Black institute with Syracuse
university. Disability rights and science,
community engaged research with people with
disabilities will review theory, evidence
and actionable strategies relating to engaging
people with disabilities as equal members
of research team.
After the presentation, Kathleen Murphy will
lead the interactive discussion session. So
Katie, if you are ready, please take it away.
>> KATHERINE McDONALD: I think my work is
going to mirror much of what we have heard
from Sarah and Mark.
>> JOANN STARKS: Sorry. This is Joann. I wanted
to also please ask our audience in the chat
box to really focus on the topics at hand
and try and keep your comments related to
the session that we're talking about. Not
to be too personal, but to really just focus
in on the issues we have in the presentation
and we hope we don't have to remove anybody
who is not able to follow up with that. We
want to remind everybody that the chat box
is for topics related to the discussion at
hand. Katie, please go ahead.
>> KATHERINE McDONALD: Thank you. My work
takes  what I am going to present today
take its don to a more granular level and
thinking about how do we do partnerships with
people with disabilities. That's why I titled
my presentation disabilities and science.
How do we move into the space of thinking
about how to do science differently so that
it helps and advances disability rights?
I will spend time on three main areas. You
will often hear me talk about committee engaged
research as a general strategy for thinking
about how to partner with committee stakeholders
and doing scientific inquiries. What do we
mean by committee engaged research, why do
we want to use it, but then also begin to
look at evidence base. Is it working and turn
to some actual concrete strategies and drawing
from my own work which is largely people with
developmental disabilities, but uniquely thinking
about how can you do community engaged research.
But to start, I first have some questions
for you. So following up on some polls, I
am curious. There are two questions presented
at once F. on your screen you do not see all
of the response options, simply scroll down
because I am curious to know how familiar
you are with kind of the theory, the evidence
based and a variety of effective strategies
that you might use to do committee engaged
research for people with disabilities. So
on a scale of not at all familiar with extremely
familiar, how you would selfrate yourself,
but I am wondering what are you most familiar
or comfortable with. So wondering if you ever
use any of the following approaches to committee
engaged research which include collaborative
research, community based participatory and
inclusive research, action research or outcomes
research or some other form of community engaged
research.
I know this second question is select one.
So select the one you are most familiar with
and we'll give folks a moment to consider
and respond. This is great. It seems like
we have most folks on the call have at least
some familiarity and, um, others or moderately
familiar with prize approaches to doing collaborative
research. It looks like lots of folks work
within the patient center. So we probably
have a lot of health researchers and collaborators
on the line today. But there are also a lot
of people that come from the community-based
research CBPR tradition. Thank you for sharing
your work and where you come from.
The work I want to share today comes from
a variety of projects. So instead of infusing
you all with the details as we GI wanted to
acknowledge the different projects which include
the ADA park, the aspire which is academic
autism spectrum partnership and research education,
the community for all projects, project ethics,
and again people with developmental disabilities
and the safety project partnering with people
with intellectual disabilities and there are
a variety of individuals and groups that have
contributed to these projects. I want to acknowledge
and thank all of them as well as the funders
which include the administration for community
living and the association for university
centers for excellence and disabilities.
You will see at the end are a variety references.
If you want to learn more, you can see that
at the end of the slides. You will notice
when I talk about my work, sometimes I use
for people first language and talk about people
with disabilities and other times I use identity
first language such as autistic adults. Most
of us see on the line, reasonable people can
disagree about what appropriate terminology
and strategies to use to talk about the group
of people with disabilities. What I tend to
do in my work is something we talk about with
each collaborative project. How do people
want to be labeled themselves, but also how
do they want their community labeled? My language
you will see using today reflects the preferences
of my collaborators.
First a little bit of background. You know,
why are we thinking about how we infuse disability
rights into science and why are we thinking
about community engaged research as a way
to do research with people with disabilities?
A theoretical background, if you will. Of
course, as we know, people with disabilities
experience a host of disparities and there
are many things we need to get to health equity
and participation or education and equity
and one thing that we need is to produce scientific
derived information this can help inform the
nature of disparities with driving those disparities
and help us figure out solution to those can
help us achieve equity. So many of us think
that science is a good thing and can help
for this struggle of social justice. But against,
that we've also aware there are legal, ethical
and social dynamics that lead people for being
understudied. Dimes this work is underfunded
or pursued by scientists. Many times they're
implicit lie or explicitly excluded and sometimes
without their explicit consent. We tend to
see often a mismatch of values and priorities
in scientific approaches. As a metastatement,
people with disabilities have largely had
little influence over the scientific enterprise.
We want to move beyond that. We want to get
ourselves somewhere else. We want to make
sure people with disabilities are able to
directly participate in research, to be research
participants to be included as equals with
everyone else. We know that had a host of
benefits from the very individual level that
I've been asked to contribute and seen as
worthwhile, but also we have better information
because we are able to understand the experiences
and preferences, et cetera, et cetera, of
people with disabilities. We also want to
move to a place where others aren't making
participation decisions for us. We want to
have consent processes and research decisions
that are selfdetermined and made by the individual.
Maybe with support.
We also include more people with disabilities
and research, we have to pay attention to
interpersonal dynamics. It can lead people
to feel more or less phased.
So that's where we want to go, but we don't
always know where to get. There one of the
tools is to use committee engaged research.
In this case, I tend to pull most directly
from community-based par participatory based
research. It is a direct response to the issues
that are faced by marginalized populations
and research. Under community-based par participatory
research, community representatives, in this
case people with disabilities, but become
full members of the research team N. that
collaborative process, there's an equitable
exchange of power and expertise. So each person,
each party is having something to contribute
and valued. So each person has insight and
the capacity to contribute, but also needs
to learn. And the goal is to not only generate
new knowledge and significantly derived findings,
but also disburse action for equity.
One of the wonderful things for a host of
other forms of engagement is that it can be
used with any research quality. Continue can
be anything. Theoretically, we think that
we want to use these forms of approaches to
research because we think it improves the
science. We think that it helps improve the
capacitation of the committee members, that
it can increase self-determination or control
one's life and we think it might help budge
knowledge translation.
In the next slide, I just illustrate what
that collaborative process looks like a little
bit more. This is one of the graphics we use
in my aspire collaborative a lot to think
about what did it look like when we do community-based
par participatory research. In the middle,
you have three boxes. We first develop a research
study. We have to figure out what we're going
to study, what's the problem we're interested
in, what's our general design and how are
we going to have funding with the resources
to do that work.
Once we do that, we go to implementation.
We have to recruit people, collect data and
analyze data and figure out what we found.
We move to dissemination. We draw our conclusions.
What does it mean to interpret what we have
found? We think about what we need to do to
do something in response to what we found,
and we try to translate those into practice.
When we do community-based research projects,
we think about community resource sometimes
called coresearchers making unique and different
and valued contributions. So for example,
I'm a professional researcher. I have a Ph.D. and
I'm on the scientific side of being on the
academic researcher. So the things that die
as research unfolds is we're going to develop
as new study. Let's make sure it has scientific
value, it builds from previous findings and
theories and let's make sure we're leading
funder priors so we can attract those resources
to do our work. When we move to implementation,
I work to make sure what we're doing is safe
and scientifically appropriate in how we recruit
and get scientific rigor as a general practice.
My contributions to the dissemination phase
are publishing findings and academic outlets
and making sure our work builds on what we
have done previously.
My community collaborators make equally valued,
but different contributions. We develop our
studies; my community partners make sure when
we're doing is a community priority and relevant
to the community. As we move to data collection,
they make sure we're having accessible instrumentation,
but also how we recruit people feels safe
and is effective reaching people. When we
turn to dissemination of our research findings,
they help make sure what we produce helps
the community, that we have information that
is understandable, relevant, publicized in
the right venue. They might be flyers and
town halls and they're different thing than
our scholarly products.
So there are many different ways of doing
community engaged research. First popularized
by Kurt Levine in the 1940s and they have
shared roots, but many different branches
and sometimes they can involve different levels
of collaboration and power sharing.
I have my next poll question for you which
is in the work you have done to date, what
aspects have  how have you engaged people
with disabilities? Have you worked together
with people with disabilities to write grants?
To design consent protocols and materials?
As researchers on IRB applications? To help
design recruitment and research instruments?
To design interventions? To help recruit participants?
Select data to analyze data and share signings
and academic outlets or policy and community-based
outlets? Again, if you don't see all the response
options, just scroll down. This is a select
all. So select as many things as you have
done. This is exciting because we have a few
folks sharing they have findings. We don't
see that as often as we always like. We value
a lot of people who work with people with
disabilities to help recruit, participants
to design interventions and even from some
of the early phases in designing grant applications
and proposals. Thank you. Great to see a lot
of varied experience.
So if that's the theory, how are we doing
as a field? Are we able to put this theory
into action and actualize, if you will, the
benefits that we hope? A few years ago, I
looked to see what was happening in terms
of meeting engaged research with people with
developmental disabilities. It is not all
people with disabilities, but we know this
is a group that is particularly marginalized,
but also as research collaborators. When you
look at the literature in terms of people
talking about does this get us to better science,
does it help capacitate the community, does
it lead to more empowerment and knowledge
translation, you can see that folks say first,
yes. We are doing community engaged research
with people with disabilities because of the
theoretical reasons. All the things we named
are important. The infusion disability rights,
the opportunity to do better science. That
is why researchers are saying we are doing
this. They have also said that we believe
it is creating more appropriate research and
that it's improving the quality of our science
and our ability to translate that science
into action. They also say it's not easy.
There are a lot of things that help them to
do community engaged research with people
with developmental disabilities, there are
things that get in the way. I will talk about
those more in a second. It is exciting there
are more and more people doing community engage
with people with disabilities. You see a lot
of us fall short in terms of true power sharing.
But there's also a pretty weak evidence based.
It is not really clear what our practices
are in the field.
A few years ago, I had a chance to study some
of my colleagues. They were engaged in a multiyear
project to design a quantitative survey with
people with  excuse me. Autistic individuals
and people with intellectual disabilities
around their history with violence victimization
and its consequences for health. Over the
years they did their committee engaged research,
I was able to study that process and learn
with them along the way to see how it went.
In resonating with what they found in the
literature, they agreed in the artifacts of
theory search process suggested there were
indeed, many facilitators and many things
that help promote committee engaged research
with their collaborators of disabilities and
this included this residence and the values
that are community based and disability rights
there. That  there is a foundation from
which to work from. Community members with
disabilities talked about how important it
was when they saw the academic researchers
take those values and translate them into
actions and actually demonstrate their commitment
to that. As they saw that develop, their ability
to contribute developed and it strengthened
and solidified their collaboration. They felt
because they had paid a lot of attention to
the diversity of their team in terms of lived
experience, but also in terms of some people
who were bridge spanners and academic researchers
and had lived the disability for example,
they were the ones who helped them collaborate.
They placed a lot of different structures
that helped them communicate with one another
and I will show examples of those in a minute.
They also thought because they engaged in
reflective practice, they paused to think
about how are we doing, what are we doing,
can we do it better and that also helped them
have a strong partnership. But with that,
there was a lot that got in the way. As
a place of innovation, there wasn't a lot
of history for them to build from. Others
would have done that work and created a toolkit
for them to use and guide their work. Because
so many people were very new to doing this
type of work, they didn't necessarily know
what kinds of accommodations they needed to
be a coresearchers and community researchers.
So sometimes figuring out what those accommodations
were as well is also sticking to them over
time was a challenge. Sometimes they felt
different members had a different understanding
of what it meant to give community-based par
participatory research and they didn't always
have action they reflected that were 100%
hearing to the theoretical framework. Often
it was because of the inadequacy of resources
and time pressures as we talked a lot about
the elder presentations that d academic
pressures can make it difficult to truly collaborate
and the time that is needed to do that. Sometimes
they felt it was difficult to share power
and have opportunities to collaborate to figure
out how to communicate with one another in
ways that everyone found accessible and understandable.
And then they thought the work was hard. In
this particular project, they were adapting
several existing surveys to be accessible
to people with developmental disabilities
and they really struggled. It was a lot of
hard, hard work and they were also doing that
in the contention of violence victimization.
They were looking at things that can be triggering.
There were dimensions of that that made
it difficult. They fell short on being able
to truly represent the full range of people
with developmental disabilities. But with
that said, they did feel they achieved a certain
level of success and saw outcomes on multiple
levels. They felt as individual project members
they had learned, they had grown as an individual
as a professional, as a community advocate,
they had acquired new skills, they had met
new people with added both to their social
capital in many ways and had an opportunity
to contribute to something meaningful and
some to earn money, which was incredibly important
to them. They thought their work had paid
off in terms of quality of the project that
because of the multiyear work, they rated
valid and accessible survey instruments. They
had better recruitment and success in data
collection efforts and they felt they had
created a partnership to leverage that knowledge
to turn it into action better than if they
had not done that collaborative process. They
also thought their work to say something to
say look. Look at we, us people with developmental
disabilities to use something so routine and
look at what we do. They also felt they had
created a model of inclusion. We look at a
lot of community agencies and they try to
create (inaudible) or governing structures
that are truly inclusive, but power is difficult
to shift and to equalize. They felt they had
done a good job and could be a model to other
settings to try to think about how do you
fully include everyone. And they were excited
they had generated new findings they thought
would be important to document the extent
of violence victimization and implications
for their health.
To quote a few of them, things they shared
over the years, so on the challenges side,
I find it real hard sometimes when group members
are talking, and they don't  and they have
real hard work. This is really frustrating
to me. When you don't understand something,
it is pretty hard. You feel like why am I
here. So that quote helps us think about when
you are not truly inclusive, you are not including
everyone, you are marginalizing folks. So
one person said often we stopped things and
go back. One or more people have addressed
confusion. We can address that. Another member
of that collaborative said that see my suggestions
considered and implemented without giving
me the 9th degree was also quite lovely. Another
added. I am learning more so I can help orders
to advocate for themselves. It is empowering
to be in charge of a topic like this rather
than being on the receiving end of the application
of this topic or the study of this project.
And in creating other science, another member
said it brings people together. So there is
not a big gap between the community and researchers.
Things are more accurate. Lastly, in terms
of social benefits, our societal benefits,
sometimes people don't realize people are
capable of doing things like this.
So now I want to get to a bit more granular
level. I want to show you product of our collaborations,
what we have created and make work along the
way. And also a few strategies that you might
be able to take moment to your own projects.
Few things that show what we have created
as a project and what I have out there is
a sample segment of one of my consent forms
from my study. Many of you may have seen university
provided Tim blames for doing your  templates
for doing your content forms. They have a
lot of dents and they don't necessarily make
sense. What we forget sometimes is that we
are not beholding to using those templates.
We have a responsibility to communicate is
an amount of information, but we have a responsibility
to make sure that information is understandable
to our target audience or population. What
we do in the content forms, for example, this
project is we really add a lot of white space.
We bold key information and keep sentences
short. We define terms. This is a sample consent
form we use in the project.
One of the other things that we have done
is help reduce the cognitive load of participating
and communicating around even just making
a decision about being in a study or deciding
to continue on with that decision. We have
created these visual communication guides.
So on the left outlined in purple, you will
see one we use with folks as they're trying
to make a decision about whether they want
to be in the research or not. And there are
so this was a focus group. There was a picture
of people coming together to talk and it is
outlined in green that had a smiley face and
a go-ahead signal. And then there's a red
one with a cross out and big no’s and hands
stopping to say I don't want to be a part
of this. People can understand those choices
and be able to point to them or to referenced
pictures rather than come up with the words
themselves. But not everyone is ready to make
a decision. Maybe you don't know right now
and maybe you need more information from us.
Maybe you need to go talk with somebody else
about your decision or maybe you want some
more time. We continue those visual communication
aids during data collection by making sure
people remember where they can stop at any
point. They can take a break or it's okay
to keep going. So we use that same kind of
red for I like to stop maybe for today and
maybe for the entire project. I would like
to end my participation. Maybe I need to take
a break. This has been hard work. Sometimes
it's physical or emotion. I need a drink.
I need to run to the bathroom. I need to move
my body, whatever that is or no. I'm good.
This helps reduce the cognitive load around
what somebody wants.
The of the thing that we have done is response
scales that illustrate for folks how we would
like them to respond. So for example, on the
top of your screen, you see five cylinders
that are empty to full in varying levels and
this is a question to rate how important something
is. So is it not important at all or is it
very important and you can see visually this
idea of something getting more full as it
is more important. To help people understand
the differences and how they might want to
respond. We have done that with a mile scale
or a frown to smiley scale. It looks familiar
to those of with you the pain scales used
in held care settings. This is from not at
all to very much and we have a frown to more
neutral face to smiles. And these help folks
respond to our survey questions.
Some of our qualitative projects, we have
used this approach on the screen in front
of you. We want to give folks a sense of where
they are in the data collection process. So
how far along are we? We might have six major
questions that we're asking in our interview
guide. And at the start of that, we keep them
up 1 through 6. We haven't gotten there yet,
and we flip them over to red and maybe cross
them out to show the progress. At the end
noting look. Check. We got it all. Let's celebrate.
That was a really great effort.
We have also done that with focus groups.
So we have projected on to a screen our different
questions. And so along the top and green
text, it says bad things about and along the
bottom, you will see four different pictures
which are connected to each of our interview
questions. We would cross off each question
as we got to it and circle in red. People
can see where we have been and how much more
there is to go.
When we have done things like online surveys,
we make sure to define or explain any terms
that folks might not be familiar with. So
this is an example where we use the hot box.
If you weren't sure what we meant by participating,
you can click and find a little bit more of
a definition. In our ADA Park project, this
is an example of how we are working with committee
members to display and give information that
may be useful to help understand disparities
experienced by people with disabilities and
help on a local level. We have as medium within
each state with people with and without disabilities.
And we also display that in a table so that
it is accessible to folks using screen readers.
In our aspire project, we have created an
online healthcare toolkit. We went from basic
needs assessment and looking to see where
there were healthcare utilization pattern
differences from the general population and
figuring out where there were unmet needs
and how we might begin to create those to
creating a toolkit to help support autistic
patients and providers to improve the quality
of primary care. You can go to AASPIREcare.
So getting more granular. How might you begin
to think about using some of what we have
done? There are lots of ways to do this? Lots
of great strategies. But from our experience,
wanting to share a few more as we think about
community engaged support and threecore dimensions.
How do we think about relationships? How do
we think about accommodations and power sharing?
In our experience, this really fuels whether
community partners with disabilities feel
respected and whether you're able to build
trust among members of the collaborative and
how do you receive IRB approval. We have
many international attendees. We have IRB which
is institutional review board. It looks at
the ethics and are you protecting participants
adequately? Are you minimizing risks? Are
you securing informed consent? In other parts
of the world, they're equivalent processes,
but some people find the IRBs can be a stumbling
block to doing collaborative research. So
I thought we would share a little bit of our
tools there.
First on the relationship side, right, if
you're going to do community engaged research,
you have to identify potential partners. How
do you develop those relationships? And how
do you maintain those relationships? What
we have found has helped us have successful
and very longterm relationships. One of my
collaborative is over 12 years old at this
point. And ongoing and continuous to do work
together. From the get go of any partnership,
really figuring out how to define the goal
and the role people will play. What is it
we're going to accomplish? What is outside
of that scope? What are we not able to do
because of skills or expertise of the team
or funding constraints or funding limitations?
For example. And what role are each of us
going to play and how are we going to work
together? I the show you an example of something
we used in our project. We pay a lot of attention
to thinking about who are we going to invite
around the table? It is not just an open call.
We need to match people in terms of their
skills, their experience or expertise, commitment
and ability to be part of as research collaborative.
So we're thoughtful. What's the diversity
we need around the table? What is the experience
we need around the table? And making sure
we think about how people come together.
In our work, we have multiple stakeholders,
but sometimes people part of the service delivery
system. Sometimes family members and we're
not always able to figure out collaboration
strategies so that we can have a full range
representation as possible. We often have
people who are a part of that and making sure
they share values and commitments with disability
rights, for example, brings them to the table
to being a really good collaborative and treat
everyone to respect and make sure accommodation
are in place so that we can be inclusive.
We also found time on personal relationships
is important. Opening up with ice breakers
or visioning exercises or just getting to
know each other in social spaces and caring
about each other as individuals has been really
important. Along the way, we have always evaluated
those relationships. Where would we be falling
short is in terms of how we treat one another
and who is at the table and what we're missing.
If you do community engaged research with
people with developmental disabilities in
particular and you want to try to share power,
accommodations become a really important aspect
of that. How did we think about making sure
everyone is included and able to contribute
because of the environment that we have set
up. One thing that's interesting is in each
of our projects, none of the accommodations
look the same. It is a very individualized
process. We do in the research project is
figure out with people, what they need and
participate to contribute. We recognize those
change over time. Or maybe they need something
now they didn't need before because their
health condition has changed. For example.
We work really hard to eliminate any barrier
to reliable presence. Some of my projects
who work in person, some of them are online
collaborations, remote collaborations. For
in person one, we provide haven't. That is
transporting folks in private vehicle. Sometimes
that means Tara transit with people and we
do a lot of ride sharing, you name T. we work
with everyone to make sure they're at a meeting.
This includes authorship. One thing we do
at each meeting is say that somebody is in
charge of being our process monitor. So somebody
is  holding the responsibility for keeping
each of us accountable to sharing to our group
guidelines. We change on who is that process
monitor. Again, I will show you that in just
a moment.
We work really hard for decisions and discussions
that we will have. I will show you more examples
in a moment. We always build in breaks. We
know this work is hard. And so we make sure
to do the selfcare that we need. We offer
inclusive food and beverages. We make sure
to take into account dietary needs and preferences
and again, we make sure to evaluate this.
How are we doing in terms of power sharing
and folks accommodations? What more do we
need to do or how does it need to change.
When we then move into the space of seeking
ethics board or review approval, we phase
a lot of attention to strategies there. And
I should share that I come at this from a
variety of perspectives. Not only am I a researcher
who needs approval, but I'm also a member
of an institutional review board or been a
member for many, many years in many different
institutions. I have a lot of different experience,
but I'm also a study of how we think about
including people with disabilities and research.
I come at this from a variety of perspective.
Making shire that we help educate the IRB or
that board and how our coresearchers are different
from the research participants. They are not
the same. Often they're confounded in the
eyes of the IRB and they want to apply the
same lens to coresearchers when they are in
fact not.
Pay careful attention to what are the roles
going to be of our community researchers?
Are they going to be involved in recruitment
and consent  recruitment and consent or
not because of the nature of that study or
because of their preferences? That differentiates
how they might be identified or talked about
on an IRB application. Because most boards
all boards in the United States require that
any research have training on ethics, but
that is not accessible to people with disability
particularly people with developmental disabilities.
We actually create project specific trainings
and research ethics 101 that are accessible
and really targeted to the roles that those
community researchers are going to play. We
bring those for approval and we do them within
the contention of the collaborative.
I will breeze through the next 3 slides because
you have them with you. We created with one
project to talk about what community researchers
can expect, what they will be asked to do
and what they will get out of doing the work
with us.
Moving on to slide 29 because I know I moved
along quickly. These are group guidelines
we created together to figure out how to work
and share power and respect everyone and make
hour that folks feel they can contribute.
We do things like saying we will start and
end our meetings on time. We will make sure
that any thought that seeks folks to express
and folks feel welcomed and encouraged and
valued. Sometimes we make sure to say our
name before we are speaking because some folks
struggle with putting a face to a name. Making
sure we stay on topic. Sometimes we do check
in. Sometimes we do popcorn discussion and
whoever has a comment says it. Other times
we do round robins. We make sure we hear from
everyone. Especially because some people might
take more time to think and some people might
be less comfortable to jump in when they feel
the conversation is going quickly. Those are
just a few examples we did in one project.
In terms of our structured communications
with one another, on slide 31 there's an example
of an email that we send out. This is my aspire
collaborative. Any time we send out an email
communication, the subject line is very specific,
and it has a new date. And the body is very
structured to say what is the purpose of that
email communication, what actions might the
receiver need to do, and all the background
information follows. So every email communication
that we send out follow this instruct tour
help folks understand what's there. I also
work with a lot of folks who are nonreaders
who where we do a lot of inperson work. We
have graphical representations and discussions
to figure out how to do our work together.
We had a new study and how are we going to
recruit people and use representations that
we know can go out and use flyers. We can
make phone calls and just using these to begin
to jog  or initiate the conversation about
deciding how we will do recruitment with any
one content.
Worn of the best things is  one of the best
things is a fabulous strategy to use in a
wide array because it is a process for making
decisions to help you figure out whether you
need to spend more time on a particular topic
or you can move on. So this goes from I quote
one finger, yay. Or two not thrilled and.
If you say any of those, it  excuse me.
It ends the decision and we then say okay.
Let's explain. Let's discuss. Let's generate
new ideas. Skipping over that. The other thing
we do each time is making sure to check out.
How did today's work go? What went well, what
can we improve next time. It ends on that
note after each meeting. I want to move to
discussion because that's where we can have
a rich exchange of ideas and resources. But
just a few thoughts for myself and conclusion.
I do think we can infuse disability rights
into science and I do think that par participatory
research is one way to get there. It is possible,
and it can, of course, address many of the
problems we see with traditional research
and hopefully (?) translation. And for collecting
safe and valid selfreport data among others.
With that said, it requires certain resources
and skills and constant attention to include
and power. I think we still have a lot to
learn, but there are more and more of us doing
this and we are creating a shared toolkit.
With that, I will turn things over to Kathleen.
Thank you.
>> JOANN STARKS: Thank you very much, Katie.
This is Joann. Before we move to the discussion,
I want to remind everyone that the presentation
files are available for download in the handout
pod on the bottom left of the window. If you
select one of the items, the link will appear
on the bottom of the pod and you can open
a link on the window by selecting browse too.
You can download the files from the expo page
from the conference website.
Now, I will hand it over to Kathleen Murphy
who will guide us in the discussion period.
>> KATHLEEN MURPHY: As a reminder, we will
have some of the things raised in the chat
and then we'll get some reactions from John
Kramer and Sandy Finestone.
One of those questions, Katie, a lot of them
had to do with your resources, can audience
use the visuals, are they validated.
>> KATHERINE MCDONALD: Yes, yes and yes. Many
images you see in black and white that are
in very simple graphics, I took from the (inaudible)
project which is a website full of great graphics
that you can use for a variety of purposes
and you can either download them for use with
attribution. So you will see at the end of
my presentation, I have a whole slide on thanking
the artists or you can use them in rights
to use. We also  I had to alter some of
my slides because of copyright issues with
journals where I published. So a bit of these
are manufactured. But the publications that
are cited at the end of the handout, you can
see some of the original materials. I think
that this is public domain. I thank science
is public domain. I think it is very important
we share with one another. Absolutely. My
email address should be there somewhere too.
If you want to exchange resources or ideas,
I am happy to do that. Did I get all parts
of that, Kathleen?
>> KATHLEEN MURPHY: You will know whether
those references discussed and have visual
scales validated?
>> KATHERINE MCDONALD: Yes. Absolutely. The
two scales that I showed are from my work
looking at how we include adults with intellectual
disabilities and research. They performed
very well. We don't have a lot of micrometric
properties on those because they weren't scales,
but they are published, and you saw a good
performance. It was clear people understood
them and were able to respond. By the partners
project or by fire. There have been more scales
there. So there's more psycho metric work.
They performed very well.
>> KATHLEEN MURPHY: This is a specific question
is. There is an online tool to have a hot
box feature. What was that software?
>> KATHERINE MCDONALD: That's an interesting
question because that's from a project many
years ago. I actually believe that we designed 
we did not use call treks for that. We designed
that in house based on a prior project at
the same university. We had a university scientist
that was part of the team and she was able
to pull that off. I think you can do it within
surveys and you can figure out ways to have
the same functionality.
>> KATHLEEN MURPHY: Okay. And as an aside,
Rebecca, if you're a grantee, feel free to
get in touch and these can help you without
that question. Okay. So some other questions
have to do with kind of the composition of
the stakeholder group. For example, how do
you decide when to invite a self-advocacy
organization versus an individual to the table?
>> KATHERINE MCDONALD: That's a really interesting
question. We found that generally we want
to have both things. Self-advocacy organization
can be real power houses and being well connected
and being effective and being change agents.
So they have a pulse on things. They often
have really important relationships or networks
that can be pulled on to benefit the work
that we're doing. So they typically always
been a strong research. I can't think of a
time when we haven't made sure to have formal
representation from leading self-advocacy
representation. There are people who don't
identify with disability prior to disability
rights or don't know about it yet. Or feels
comfortable in those circles. So we also make
sure to have individual representation as
well that folks who haven't been a part of
those networks. We have done both in our projects
to date.
>> KATHLEEN MURPHY: Identities as we all know
are perplexed and different aspects and come
to the fore in a given team and what we're
representing. This has come up in the earlier
times as well. It also has a disability or
not. How have you handled that issue or people
members of your team who are researchers with
members of disabilities?
>> KATHERINE MCDONALD: That's a deeper question
than we have time for. In some experiences,
we found that folks who have the lived experiences
are the most effective researchers. They speak
from both perspectives. They are trained as
scientists and have experience and help navigate
those dual spaces. We have found over time
that one of my collaborators feels that sometimes
she's less and less a committee member and
spends more time as a scientist and feels
more out of touch. So she makes sure to include
representation that's more diverse and has
less experience than she has because all of
that is considered. There's also a lot of
concerns around discrimination and micro aggressions
as a disabled researcher that we have to help
navigate with an academic basis, for example.
So I think it's rich and rewarding, but not
without its challenges. And critically important.
That's what we have to do is change who is
doing science.
>> KATHLEEN MURPHY: Exactly. And I'm looking
at how you address the challenges and build
processes when doing community-based par participatory
research versus physical, intellectual, visual
and hearing. So when we add teams, some research
team members bring that up. Have you found
other more structured ways of addressing challenges
and built processes?
>> KATHERINE MCDONALD: When we have scientist
with lived experience, we stumble less in
terms of initial plans. We paid attention
to the fact if were chalkboards in the room
or buildings were (inaudible) or have a safe
place for paratransit to let off or have close
parking. We just  generally take a flexible
approach and try to anticipate and then figure
out with people anything that we need to do
to create accessibility. People that have
boundary spanning and not just been about
people with intellectual disabilities. We
have to figure out how to bring together accommodations
that might seem they don't jive well together.
So for example, somebody who doesn't want
too many inputs from a sensory environment
with somebody who needs their watch to speak
the time out loud and figuring out how to
navigate those together. We sigh things pop
up more in collaborations and then we figure
out ways to work together so everyone feels
accommodated.
>> KATHLEEN MURPHY: Seems like a good segue
to questions we posed in reactors. It is not
necessary in order to be able to express disability
rights. So do any reactors on the phone have
anything to say about how you address selfdetermination
in your work?
>> JOHN KRAMER: Yeah. I can chime in. Kind
of quickly there are three different levels
that we incorporate first is just overall
on the broad level. Our work focusing in and
of itself is informed by as a result of disability
rights movement. So for example, they made
it clear they don't want to sell the workshop.
They only want  they don't only want day
programs, but they the work. They are working
for strategies to make that happen. I think
a lot of what Katie said in partnership and
power sharing on the project level, we have
taken a longterm view with selfadvocacy organizations.
We have had a few  our organizations we
maintain consistent partnerships, but not
every project is super effective or meaningful.
Some of them are clearly more than others.
They build a longterm relationship which improves
the quality and relevance of our research.
And finally, kind of going on an idea of it
being personal. Not every person with intellectual
disability has to be a selfadvocate. Practice
is personal and not every relationship needs
to be an organization or stakeholder. We have
focused on how do you hire people with intellectual
disabilities to work as researchers. They're
not just a member of the different group.
They're a part of our staff and how do we
support that, how do we mentor those both,
how do we set a career path for them. How
what is their role like internal staff meetings
and culture as well.
>> KATHLEEN MURPHY: Thank you, John. So, um,
can anyone describe how their research effort
were impacted by disability rights? And one
particular aspect might be if a community
with disabilities they want to kind of get
research moving on to a new question, updating
the information where the researcher might
want to be more focused on replicability and
might want to find out the same findings are
comparable over time. I don't know if any
of that came up in the time the reactors did
how the research factors were impacted, and
it is a relevance question.
>> SANDRA FINESTONE: So, this is Sandy. I
don't say to Kathleen, thank you so much in
sensitivity to the needs of your participants.
I was textually struck out over and over again.
That was part of the discussion. And also
that I do like the fivefinger process. I noticed
in one of the chat notes that someone mentioned
that for those that have visible disabilities,
it may not be a way of accommodating or including
them, but I think that it's a really nice
process for those. I think you know well enough
from my discussion right now, I'm kind of
a yes, no, right or wrong. I make decisions
very quickly, but not everybody does. I appreciate
that very much.
As far as how research if it's impacted by
disabilities, I will just say that I am very
touched often by the researchers that I participate
with who are dealing particularly with those
patients that are meta static and don't always
have the energy to participate in longfocus
groups or need to be accommodated in some
other physical way. I want to send a shout
out for the researchers I have participated
with who are very sensitive to those issues
and how nice and refreshing that is.
>> KATHLEEN MURPHY: Thanks, Sandy. Deb, did
you have any final thoughts on successful
partnerships with researchers and/or practitioners?
>> DEB ROSE: Real there was one of the things
on disability rights and especially about
combinations. When in working with individuals
across the life span, what we have found is
really embracing and supporting development
of that selfdetermination, kind of a proactive
way to address disability rights because it
is really empowering the individuals to become
their own advocate. And who really become
advocates for their rights and to rights in
the community. We have had several individuals
we have worked with that develop those skills.
They have become ambassadors and work for
change in their community. I wanted to share
what I thought as selfdetermination to be
a key that really support that.
>> SANDRA FINESTONE: This is Sandy. Do you
mind if I mention one more thing? One thing
that I  perhaps I missed in the presentation
and that's the issue of care givers for those
with disabilities. They have a tremendous
amount to contribute to the conversation.
And I think it's important that we not overlook
the care giver.
>> KATHLEEN MURPHY: Really good point, Sandy.
Joann, I think you have some tips to close
out the day.
>> JOANN STARKS: Thank you very much, Kathleen
and all the reactors. I do want to thank all
of today's presenters, Sarah Bowen, Mark Bayer,
and Katie McDonald. And also John Kramer,
Deb Rose, and Sandra Finestone, who served
as the reactors this afternoon.
