The AASPIRE Healthcare Toolkit – Primary Care for Adults on the Autism Spectrum

– to call back to the podium
for encore performances, Dr. Clarissa Kripke who is Clinical Professor of Family
and Community Medicine and Director of the Developmental
Primary Care Unit at UCSF. The mission of the Office of
Developmental Primary Care, founded by Clarissa, is to build a capacity
of the healthcare system to serve transition-age youth and adults with developmental disabilities through clinical service,
advocacy, research and training. And I could say a lot more
good things about Dr. Kripke, but I need to say some really good things about Dr., Doctor Dora Raymaker who earned her PhD since the
last time Dora presented here and, so, she is a Research
Assistant Professor at Portland State University’s Regional Research Institute
for Human Services. I have to read all of this
because it’s so impressive. She’s conducting
community-engaged research with disability and
mental health communities around employment, health and anti-stigma. Dora’s also an autistic person and a disability-rights advocate who enjoys writing science fiction novels with disabled heroes in free time. My goodness, you must not
have a lot of free time with all those academic endeavors. But so, we are certainly delighted that they are going to present on
the AASPIRE Healthcare Toolkit which Finn referred to earlier as something that is used with all of Finn’s clients all the time. So let’s hear about it. – Thank you.
– Thank you. (audience applauding) – Thank you. I’m a Research Assistant Professor at Portland State University
in the School of Social Work. I do social-service intervention research with disability populations. I mainly work with people with
intellectual disabilities, autistic people and people who experience psychosis and mental-health challenges and my research is around
employment, health. I have a pregnancy and
interpersonal violence, many things that I’ve heard
today and it’s exciting. I’m also the Co-Director for the Academic-Autistic Spectrum Partnership in Research and Education that is the research group
that created this Toolkit. I am also an autistic self-advocacy and disability-rights advocate. You can see that, from an early age, I kind of had some ideas
about civil rights, so … (audience laughing) – And I am on the clinical
faculty and run a consult service for people with complex
developmental disabilities and provide primary care to people
with complex disabilities. And I am an academic partner
of the AASPIRE network that you’ll hear about today. – Before we get into the
AASPIRE Healthcare Toolkit, I wanna give a little
background on the AASPIRE part. I co-founded AASPIRE with
my physician, researcher, colleague, Christina Nicolaidis,
all the way back in 2006, before I ever thought that I would get into
health-services research. I was her partner from
the autistic community and we were trying to deal with the problem of lack of
inclusion of autistic people in autism research. AASPIRE is a team of academic researchers, autistic people, family
members, healthcare providers and disability professionals. And many of us, like myself, wear more than one of those hats. We’re housed at Portland State University and we partner with a number of both community-based and
academic institutions. Our mission, however, for all
these years has never changed, which is to equitably
include autistic people in autism research that is relevant to the autistic community and
creates positive change for people on the spectrum
by our own priorities. This Toolkit is the result of
a multi-year research project to improve healthcare access and quality for autistic adults. Some of you might remember
that I was here seven years ago and, at that time, when I spoke to you, we had collected our very
first data on that project, but we hadn’t done anything
about what we had found yet. So, I get to come back here and present this next chapter
in the story of what we then, I’m gonna first tell you
some more of what we found because there’s a lot more of it and it’s a lot more clean to present now. And then, what we did about it. First I’ll talk about the approach we took
to making the Toolkit, which is community-based
participatory research, which, I assure you, is useful
for more than just research. Then, I’ll go through the
development of the Toolkit and what we learned about healthcare for autistic
adults from that process. Then, I’ll turn everything
over to Clarissa for recommendations, tips, a demonstration and some of the tools that
she has also developed here. We created the Toolkit and conducted all the science behind it using this community-based
participatory research approach. I say approach because it’s
a way of doing research. It’s not a method like a
survey or an interview. It was a response to the problems that marginalized people and communities have had with research,
like unethical studies, not being included in
research that was about them, research methods or results being invalid because the researchers didn’t understand something really important
about the community, study results that weren’t
important to the community, or could even be harmful or stigmatizing. The idea is to create
an equitable partnership between researchers and
members of a community. And this approach, like I say, works outside of research too, for example, in person-centered
planning meetings or in developing an interactive website like the AASPIRE Healthcare Toolkit. Has nine guiding principles which are: to acknowledge the community
as a unit of identity; to build on the strengths and
resources in the community; to facilitate a collaborative,
equitable partnership in all phases of the research; to foster co-learning
and capacity building among all partners; to balance knowledge
generation and intervention for the mutual benefit of all partners; to attend to both local and broader, systems-wide perspectives; to develop systems using a
cyclical and iterative approach, so you’re always reinventing yourselves; to disseminate results to all partners and to involve all
partners in dissemination, so that’s not just going
into an academic journal; and, to commit to long-term processes and group sustainability, because it takes a lot of work
to do this at the beginning, but there is a really big payoff once everybody trusts each other and you’ve got processes that work well. So, what does this look like in practice? Equitable does not mean
everybody does the same thing. We’re not going to insist
that community members become statistics masters. And, we’re not going to insist
that non-community academics suddenly know what it’s like
to have lived experience. It means that expertise,
power and learning is shared. So, during all phases, the community keeps the research respectful, accessible, socially-relevant, relevant
to their community, while the academics make sure that it’s scientifically-sound and
academically-relevant, so that when you have results, people will actually believe them when you go to advocate for policy or do something with them. For example, during the development stage, the community may ensure that
the study’s focus and design meets what the community
prioritizes and what is helpful, while the academics make
sure that it’s rigorous and going to advance science or
to improve clinical outcomes. In order to do this effectively, process and structure
are really important. Power sharing is an easy word to throw out and a really difficult thing to do. And everybody has to be
actively involved in it. It means that academics and
people who have more privilege need to give up the power that they are used to
automatically having. Community members also need to take power that they may be unused to
having or ever being given. And trust is really hard to build. So we use a lot of
structures and processes to try to help provide
a foundation for that, including how to communicate in a way that privileges the community. How to make truly-shared decisions. How to make the space
safe to give feedback and adjust the group
based on that feedback. How all of these things happen will look really different
depending on your group. I have AASPIRE. I also have a group of young adults who have experienced
first-episode psychosis. I have a broad developmental
disabilities group that we worked with, all of these using this method, and what we’ve done has
looked very, very different because of the specific
individuals who are involved. This is a quick look at some of the strategies that AASPIRE uses. To equalize communication, we use an email Listserv
and a text-based group chat. Some people on our team
don’t talk or use speech. Some can’t manage phone calls. We had somebody who was
deaf for a long time. So that’s the place where we found that everybody has the same communication and everyone’s
communication needs are met. And it’s, at time, put the
more privileged academics in the group as a disadvantage. I remember Christina early on saying, “Now I know what it
feels like to be forced “to communicate in a way
that doesn’t work well,” because she was so slow at
typing and she didn’t understand any of the social rules of the text chat that us, in the community, we had been talking to each
other through this for years. And, yeah. – I just wanted to say that this was 2011. I was invited to my
first AASPIRE text chat and I was so excited. I participated very actively and then got the feedback that maybe it would be better if I didn’t. Maybe it would be better if I and the other academic partners listened and just observed and then we would have a separate
phone call for the academics who could speak in the jargon
that we’re comfortable in. And you made it very
comfortable by saying, “You know, you have a
way of communicating. “You have a way of thinking. “And that’s important to this group, but “ne’er the two shall meet (laughs) (audience laughing) “without specific facilitation.” So, even people who have
a lot of experience, who are used to working with
people with disabilities, who are used to talking to
people with disabilities, this process takes that really seriously, and makes us relearn what’s possible in a way that took it to
a really different level. – We let Clarissa back into
our text chat since then. (both laughing and audience laughing) – I’m also guilty. Sometimes we’ve had academics, or jargon, be a problem for those
of us who sit on the, who wear multiple hats too. Early on one of our
community members came to me and told me she was terrified every time she saw an email from me because it was “so full of
details and sciencey stuff.” So she suggested a
structured format for emails that we have used ever since, it’s like been a decade now, that list very explicitly,
the purpose of this email, who it’s for, what action should be taken, what the deadlines are, and
then the details after that, so that everybody knows
what’s expected from them. And jargon absolutely
needs to not be in anything or it needs to, at least, be explained because equalizing
communication is, in my opinion, the foundation of shared power and nothing else can happen without that. For shared decision making we
used this five-finger, oop, Am I off a slide? I’m sorry about that. We use a five-finger consensus
process for decision making where the decision gets
spelled out plainly and then everyone indicates: one, I love it; two, it’s fine; three, I have questions, which are; four, I don’t like it because
… , but I won’t block it; and, five, I hate it because
… , and I will block it. And then we discuss any
threes, fours and fives, and make changes to the idea
potentially based on that until everybody gives ones and twos or there are unresolvable fives. Any unresolvable fives, So this has really helped us
to make sure that everybody has the same amount of
power and decision making because everybody has an equal veto. And everybody has an equal
chance to come up with, to express what might
be getting in the way. We’ve had some really
interesting things come of that. On one of my projects, we were
actually using this process to decide if we wanted
to use this process. One of the people there
had given it a five. She really hated it
and didn’t wanna do it, but because you have to say why, She was somebody who had been incarcerated
in an institution for most of her life and had been really infantilized and treated like a child. She felt like holding up fingers was an incredibly childish thing and she wanted no part of it. So, we decided that, instead
of holding up fingers, people would say what number they were and she was totally fine with it and we ended up using it
through the rest of the project. So there are things that you might not understand about people if you don’t have some process for understanding why they’re
making the decisions they are. So we love this. We use it. For feedback, we do a
Keep/Change exercise, sometimes at the end of meetings that helped a lot at the beginning when we didn’t really
know what we were doing. It became less helpful because now we just wanna keep doing what we’re doing. But we do check-ins when
a lot of time has passed or there have been changes, and we’ve also used some
confidential, external evaluations so people can speak more freely. We try to continuously
improve how we work together. Accommodations are also at the heart of equalizing power and making
a true collaboration. Some of what I talked about
are all accommodations, but these are some from
some of our other meetings. We’ve had a ASL interpreter. We’ve done pre-meetings where we meet one-on-one with somebody to explain what’s gonna
be going on in the meeting so that they have some extra sort of ability to ask questions
and figure stuff out. Personal assistance in meetings. Sensory accommodations. Extra processing time. Things go slower, but they go better. Alternate formats. Attending to socio-economic things like money for childcare or transportation can make it accessible. But always ask your collaborators
what works for them. I’m a researcher so I use
this process in research, but it can certainly be
used in other settings. My project with EASA is a, EASA is a program for young adults who have experienced
first-episode psychosis and they have a Young
Adult Leadership Council which is the advisory
board to the whole program and there are some members
of that Advisory Council who are also part of my research team. They liked some of these processes so much that they brought them back
to their Advisory Council and now use them for that. Also, you can use it to create
products like the Toolkit, accessible technology, anything like that. And, the approach can be applied
to person-centered planning or to shared decision making
and healthcare settings. – As an academic partner of AASPIRE, I have deep respect for all that work that goes into inclusion, real inclusion, and accommodations in making sure that no opinion and no
participation is left behind. One of my observations is how the rhythm of the
work is different from most group processes
that I’ve been in before, where you start often with a general idea and then drill down into more specifics and start with a draft and then get something that is refined over time. It can feel like we’re spending an enormous amount of resources,
an enormous amount of time, doing that inclusion
and accommodation work. And it can feel nervous that we’re not gonna meet our deadline or we’re not gonna make our deliverable because we’re spending so much time figuring out all these accommodations. But, there’s a lot of
thinking that happens when you have to explain something to really, really different people and have them all truly understand and, from the kinds of
feedback and questions that you get as you really take that time and take that time in your meetings to really bring everybody along. But then, at the end, when
you’ve done all that work and it comes time to really
nail down what you’re doing, it crystallizes really quickly and we’ve met our deadlines
and it’s been one of the most, It’s been one of the
most productive projects that I’ve been on. We’ve published quite a bit together. And, when it crystallizes, because of all that
work, it’s really solid. It really works. And when we study it, it
actually improves people’s lives. We nail it because we’ve
done all that work. And, so, it can look messy, it
can make you nervous, but stick with it, believe in it, ’cause, in the end, it works. – Now I’m gonna go into the specifics of the Toolkit development and what we learned about
barriers to healthcare and healthcare experiences
for autistic adults. The first study we ever did was a survey on healthcare disparities between autistic and non-autistic adults. One of the measures on
that survey was a 66-item, yes/no checklist with categories of, oop, transportation, availability and access of
service or system, insurance, accommodation and access
within facilities, social, family and caregiver support, and individual-level factors,
which were things like finding the system, medical
system, too confusing, or fear. And we had 209 autistic participants, 55 non-autistic, but who identified as
people with disabilities, and 173 non-autistic people who identified as not having
disabilities, take it. The autistic participants selected both different and greater
barriers to healthcare, particularly in the areas
of emotional regulations, patient-provider communication,
sensory sensitivity and healthcare navigation,
which is no surprise to you all. The top barrier was fear or anxiety, which other groups rated high, but just nowhere near to the same amount. And then the second biggest barrier was unique to the autistic group, which was not being able to process information quickly enough to participate in real-time
discussions and communications about health and healthcare
with their providers. Other barriers were concern about cost, facilities causing sensory issues, and difficulty communicating
with providers. So we considered accommodations for these and many of the other top barriers when we were putting together the Toolkit. We then did semi-structured,
open-ended interviews with 39 autistic adults and 16 supporters. We wanted to understand
their healthcare experiences and how to improve them. We offered in-person, telephone,
email or text chat to try to accommodate the broadest
amount of people we could. Seven years ago I had preliminary
results from that study, but here is the totality
of what we’ve learned. So, there’s a dynamic interplay between patient- and
provider-level factors. It’s not like you can just fix
something on the patient side or fix something on the provider side and have everything
magically fall into place because the two are continuously interacting with each other. And all of that exists
within a healthcare system. If the healthcare system
can’t support people’s needs then none of that matters. So, those three factors
in their combination is what we heard about leading to people having
greater or lesser success in their healthcare interactions. These are some, in people’s own words, to kind of give a little insight into what people might be experiencing when they come into your offices. Challenges in verbal
communication skills were common but differed in nature,
depending on the person. For example, one supporter described her son’s literal
interpretation of language. “They asked him, ‘On a level of one to 10, ‘where is your pain?’ “He said, ‘Um, how do
you weigh your pain?'” An autistic participant described, “It is always hard for me “because I don’t have the
words that normal people have “to communicate with. “I don’t always know
how to respond properly “to questions from healthcare providers.” Sensory sensitivities
were, of course, prominent. Both patients and supporters said sensory sensitivities impacted
their patients’ ability to have a healthcare interaction at all. One participant described, “The lights in the office are very bright “and it is exacerbated by the white walls. “Sometimes the waiting rooms are crowded “and I cannot filter out “the background of people
talking or shuffling magazines. “I feel disoriented by “being led down long
hallways to different rooms. “I am not able to bring
out my concerns because “it is all I can manage “to figure out what the doctor is saying “so I can respond to his questions. “But he refills my usual
meds and I go on my way.” Participants described
challenges with body awareness as another dimension of sensory that is sometimes not thought about. For example, this participant explained, “Like when they ask if pain is shooting “or stabbing or burning, it’s like, “‘I don’t know, it just feels funny.'” Another explained, “The problem is, “it is difficult for me to
isolate specific sources of pain “and identify duration and intensity. “It’s sort of equivalent to white noise.” Many other known
autism-related characteristics affected care, including
patients’ need for consistency, slow-processing speed, atypical
non-verbal communication and the executive function
organization stuff. For example, one participant explained, “With my autism, “it is very difficult for
me to understand and follow “all of the different
appointments and procedures “I have to schedule and how to do it. “And no one will help
me since, apparently, “people magically become
competent at these things “before they turn 21.” Looking now at the provider-level factors and how those interacted with
those patient-level factors. Autistic adults and supporters,
almost uniformly, complained about providers lack of
knowledge of autism in adults. So I’m very happy that you are all here. One participant described, “I have gotten the
distinct impression that “all of the physicians I have seen “have no clue what autism means or entails “or how that should
change how they treat me.” Another states, “I thought doctors “would understand my autism. “I thought saying, ‘Well, I have autism,’ “would be a suitable explanation for “why I have age-inappropriate troubles “with managing my healthcare, “but it’s not.” Similarly, supporters related that they regularly had to teach
providers about autism, including reminding them not to over-attribute behaviors to autism. One said, “People attribute
behaviors to the autism “rather than looking for an illness first. “‘Oh, that’s her autism. “‘She’s banging her head against the wall “‘because that’s her autism.’ “No one thinks, ‘Oh, gosh,
maybe she has a migraine.’ “They forget to realize she
can’t verbally express it, “so she uses behavior instead.” Participants attributed many negative experiences with healthcare to providers having incorrect assumptions. For example, an autistic
participant explained, “I’ve used my Alphasmart “which is a portable communication device, “when my speech is too slow
or difficult to understand “for medical appointments. “Some of the doctors
have been really great, “but others have acted really
condescending when I used it. “Also, immediately assuming
I couldn’t be alone, “had to have parents there too. “So I try to go without “even when my speech
is in a poorer shape.” Another related, “Usually when “I demonstrate a large
vocabulary or some fundamentals, “my needs, especially
around communication, “are then ignored. “My choice is then, to
pretend to be less intelligent “and accept their infantilism, “or to be confused,
frustrated and stressed out.” Providers’ willingness to allow patients to communicate in writing really was one of the reasons that patients felt that they received better or worse care. “I prefer and find it easier
to communicate in text, “but, with every doctor I speak to, “they wave away the
note-card and look at me “and ask the same question
I have just answered “and interpret my confusion as “my being non-compliant with the medicine. “I wish healthcare providers “would read the notes I make for them.” Providers often use to fail
use accessible language. “But they talk to him “in the same words they’d use
if they were talking to me. “If they’re gonna talk to him, “they need to say it how
he can understand it.” Failure to communicate
in an accessible way often led to decreased patient autonomy. “Just because I might
need more information “to understand things, it doesn’t mean “they can or should just
talk to me like a child “or leave me without
knowledge of my own health. “My body is my body and my experience “and my wishes about my
body are mine to make.” Openness to accommodations
really influenced things. “And they were very happy to “accommodate all of her sensory
and communication needs, “including communicating with
her by email ahead of time “and giving her descriptions
of who would be there, “what the process would
be, how long it would take. “I believe they even supplied her with “photographs of all of the
staff and their names.” Providers’ skill at
incorporating supporters also greatly influenced care. Both patients and supporters describe decreased patient autonomy due to healthcare providers
communicating with supporters instead of patients. One autistic participant explained, “The triage person kept speaking to “the person who brought
me, rather than to me. “The lady could have
spoken directly to me.” There were also examples from
both patients and supporters of ineffective care due to providers not including supporters when
they were needed and desired. Appropriate supporter involvement increased the patients’
satisfaction with healthcare. For example, “[my Mother]
would say the things or answer the things I don’t
know like insurance things, and I would answer the other things.” Remember that all of this dynamic is also being influenced by the environmental context
in which it’s happening. And the system-level factors really surrounded and influenced that interplay of the
patient and the provider. For example, experiences
were often tied to the availability of supports, as well as the complexity
of the healthcare system. And many positive experiences had necessitated the
help of family members or disability services professionals and people who weren’t
getting sufficient services indicated that that was a reason why they weren’t getting as good care. “I wish they understood how easy it is “to get confused with all
the administrative hoops “a patient has to jump
through to get help. “It sounds pathetic at my age, “but I need someone to hold my hand. “I don’t know what I am doing, “but no one understands that I need that “and there’s definitely
nobody willing to do it.” I think this goes back to
Finn’s paperwork point. The accessibility of facilities, of course, are a big deal. Really doesn’t take a whole lot to modify things so that you can meet the needs of
most people on the spectrum. Right now, these offices are
set up for the physicians. They are not set up for the patients. And then, of course, there’s a discrimination
and stigma about autism, which was part of everything. Some autistic participants
were very hesitant to disclose their diagnosis
due to fear of discrimination. “I’m very careful when
it comes to disclosing “my autism diagnosis to
my healthcare providers “because I fear it’s gonna
affect my healthcare.” Others worried that providers would share common
misconceptions about autism. And, finally, the autistic
participants in our sample noted challenges related
to other societal issues that are well-known to affect health, basic self-determinants of health, which they often attributed to
disability-related challenges in obtaining or sustaining employment. Early on, we also surveyed, did a brief survey of 129 PCPs and found that, while most of them felt uncomfortable taking care
of people on the spectrum, and most of them had no plans to attend a
CME like this, most of them would accept an autistic patient
into their practice anyway. However, they did say that they would look for
information on the internet, that they would read a customized report, and that, if a patient
brought something to them, they would appreciate their effort. So that is really, all together, all of those patient parts and that feedback from physicians, is what went into the
AASPIRE Healthcare Toolkit. We developed it collaboratively using our CBPR process as I described. The content and the form was
based on our study findings and from also the insight from the people with lived
experience on our team. And that includes
clinical lived experience. It resulted in a website for
both providers and patients with worksheets, checklists,
resources, information, and then the Autism
Healthcare Accommodations Tool which is a place where
patients, supporters, direct-support providers, providers, can go in and check off
things that help accommodate, to help remove some of these
barriers that we learned about. And then there’s a computer program that translates all of
that into doctor-speak, and puts it in a format that’s
then accessible to doctors because doctors need accessible formats. I went to see a neurologist
about migraines once and I brought in a whole
bunch of paperwork on exactly what my accommodations were and all of these things about me. I had an incredibly negative experience and I got nothing resolved
and it was terrible. Christina, who’s in internal medicine, the person who had an office
next to her was saying, “You know, gosh, my wife
had this autistic person “come into her office
who brought in (laughs) (audience laughing) “this 10-page volume about everything “and my wife was so overwhelmed “and she had no idea what to do.” And that was me, so (laughing) So our goal here was to take my 10 pages and to turn it into something that’s not gonna terrify
the neurologist. (laughing) So after, oh, I guess I should finish up. I got too excited with my story. So we did some testing of that. We did cognitive interviews
to make sure that what we thought, the language,
the lay language, meant was also, we had autistic people, as diverse a range as we could, come look at it, tell us
what they thought it said. And then we tested to make sure that it was reliable over time. And we did a little
evaluation of it that had both a numeric quantitative survey and some write-ins where people could tell
us what they thought. One group of participants, we did a pre-post intervention design with the intervention being
using the AHAT and the website. And it was in just real-life. The autistic patients, they
completed the pre-survey either directly or with
the help of a supporter. They used the AHAT to create a
personalized-accommodations report and then they could choose whether for us to send it
to their provider or not. Then we gave them free
access to the Toolkit. And a month later did a post-survey and our instruments were
around like, healthcare self-efficacy,
patient-provider communication, healthcare utilization. We had questions about those barriers from that initial 66 list item. That’s what we were looking at. We got a pretty diverse group
of participants to take it. 170 of them. And we really we’re
not expecting anything. It was a month. It was a month of a passive intervention and we thought we were like just testing to make sure people could
answer our measures. But, we got a really good, first of all, really good feedback in terms of that it was easy to understand, it was important, it was useful, that people would recommend
it to friends and providers. Providers thought it was useful, that they would recommend it to patients. And then, most surprisingly, we found that there was actually
a significant reduction in people’s perceptions of
their barriers to healthcare, an increase in healthcare self-efficacy and an increase in
patient-provider communication. We were like, “This has to be a mistake. “This is just a month.” But, because we had the write-ins, we were able to really get some idea about why this actually made
a difference in people’s lives even though there wasn’t time for them to even see their doctor. And one of the big things
is that it gave a means for people to clarify and
communicate their needs. – One of the participants said, “Filling out the survey helped me clarify “some things which I
was only vaguely aware. “It also helped put into words, “things I’m unable to communicate “because I cannot think
of the right words.” – It was also really validating to a lot of people who thought they were the only ones who
were having these experiences or that they were
somehow weak or deficient because they were having
their experiences. So it validated their experience and empowered them to be
better self-advocates. – Another participant said, “It was validating. “Previously I felt that “some of the the things I was doing, “like bringing support with
me, was a sign of weakness. “Now, I view it as a
part of accommodation. “It also gave me some ideas “of things to try that
I hadn’t thought of.” – It also improved self-efficacy by helping people prepare for visits and feel solid in what they were doing. – “It takes away a lot of “my uncertainty about the appointments. “Whether I’ll bring up
everything I wanna bring up, “whether I ask the right
questions about followup care “and being prepared for
talking to new doctors. “It’s a game changer for me.” – Most did voice enthusiasm about their effect on the provider. – “Y’all sent things to the doctor “so maybe this time he’ll listen to me.” – However, we did have a minority who voiced concerns about
their PCPs not appreciating it or it possibly making things even worse. – “When I asked my psychiatrist
to not use air fresheners, “she said she had to or
else her office smelled “and she acted like it was
a really big burden on her. “I think that if I had
handed your nice letter “to my physicians they would think “I’m asking too much of them. “I already stand out. “I don’t wanna stand out more.” – They also left for us some
examples of actual change that happened in a month,
which was pretty cool. – “I brought a copy of
the accommodation letter “in case he had not received it. “He had and it was already
scanned and into his computer. “He went over it with me and
did what had been recommended. “I was reassured that the doctor “was taking the accommodation
letter seriously. “I felt like some of the
difficulties I experienced “were addressed and that
they wouldn’t have been “had I not made use of
the Healthcare Toolkit.” “I think the Toolkit validated “that my concerns and
my daughter’s issues, “sensory, behavioral, et cetera, “which often presented
during medical appointments, “were typical for ASD patients
and should be accommodated.” – So from the primary care providers, most did appreciate the Toolkit’s utility. – “Extremely helpful. “What I needed were specific, “but concise, suggestions regarding “how to make my patient more comfortable. “The report will be in her chart “and I will use it as each visit.” – However, we did have some providers who just sort of poo-pooed it and said, “Oh, I don’t need this “because I already know
my patient really well,” which, I don’t know, might be the case. And two providers said that they just didn’t have time for it. I am now going to pass my poor clicking off to Clarissa who’s going to tell you more about the Toolkit itself
and give you a tour and … – So here it is. Use it. (laughs) Take a picture. There’s a sample of an
accommodation letter. There’s a couple samples of accommodation letters in your packet so you can see what that
looks like for the doctors. Here’s what the Toolkit looks like and how you can use it to improve care. It’s primarily designed to
assist healthcare providers, patients, and their supporters
who are accessing care. It’s split into two parts. There’s a section targeted at
patients and their supporters and another part for healthcare providers. It consists of information and worksheets and the interactive tool that
we’ve been talking about, that helps create the
personalized-accommodation report. The color themes and the
font sizes can be changed to meet user needs and preferences, as well as an array of
accessibility features. It has read-aloud options. It’s accessible to screen readers. It has ways to collapse
and simplify information for less clutter and distraction. In other words, all
that work that we put in to learning how to work
effectively with autistic people, was built right into the
structure of the tool, and makes it a very
different kind of website than others that are on the market. The section on Healthcare Providers includes basic information on autism. It has tips for providing care, discussions of legal and
ethical considerations, such as how to obtain
informed consent, and information on medical conditions
and resources and links. And, again, this is all generated from this very robust process,
collaborative process, so very much informed by
people’s learned experiences as well as the academic input. The Patients & Supporters section has information on healthcare,
staying healthy, rights, and it has checklists and worksheets to help people access and
manage their healthcare. For example, there are tools to help walk people through the process
of making an appointment, what to bring to an appointment, and worksheets to help people
describe their symptoms. Of course, it has the
personalized-accommodations report you can see at the top there. When you go into that personalized-accommodation report tool, here is an example of the
kinds of questions there are. So, this question is, “What can help you make good decisions “about your healthcare?” And you can pick up to, oh, thanks, You can pick up to three choices. So, possible suggestions
include things like, “Give me very blunt and concrete examples “of what could happen if I did or did not “follow a recommendation.” Or “Let me discuss my choices first “with a person I trust and
then come back to you.” I think that’s a really important point, not just from this tool, but in applying the processes that we
were talking about with Dora and about how people may not be able to participate in a healthcare appointment or in a person-centered planning meeting or in a research group or
another group in real-time. And so, being able to step back and do some of the work in other settings can allow people to participate rather than just assuming that, if they can’t participate in real-time, that they can’t participate at all. I think that’s really important. Often people are worried that if they get an accommodation letter, it’s going to have a lot of
money associated with it, it’s going to be difficult to implement or complicated to implement. Sometimes people need
things that cost money and sometimes it does take time and effort and I don’t wanna minimize that, but a lot of the most effective things are pretty simple and easy. The trick is to know what they are and you can actually save a lot of time and save a lot of money
by getting it right. The Office of Developmental
Primary Care at UCSF isn’t a research group, but we apply many of the same principles to our clinical and training work. And, we also partner with stakeholders, a variety of stakeholders,
to create resources that are also available
free on our website. There it is up there. You can visit it. It’s free. It’s there for you. I wanna share some of those resources which are complementary to the Toolkit. For example, we have a whole section on advice from self-advocates. So, one-pagers on sensory symptoms, on how to work with
people who accompany us to our medical appointments written by Melissa Crisp-Cooper here. We’re honored to have you here today. We have more specific information about how to access
resources in California. The Toolkit for AASPIRE
is a national project, whereas our website has
California-specific information. And, we have information on supported healthcare decision-making, on understanding
aggression and self-injury, managing meltdowns,
successful community living and transition and also resources on communication
access and much, much more. There’s also different tracking forms
to track your healthcare, like seizures or bowel
movements or other things. There’s a wealth of information there. I wanna talk a little bit about one of our newer resources which is on communication access. The most important accommodation
for any appointment is communication. Communication is the
foundation of patient care. Everybody communicates. Find a way! Supporters are important
and, with permission, can certainly provide a lot of information that’s helpful to supplement, but only a patient can tell you about their thoughts, feelings and internal experiences and motivations. And I’ll tell you a
little story about this. I had an autistic patient
who came in with her sister who didn’t actually
know her all that well, because her mother had
been providing her care and her mother passed away, unfortunately, before she assisted with
making an accommodation letter ’cause had she done that, we would have been in better shape. But, the sister was very insistent that she could not
provide me with a history. And she thought something was wrong, but she didn’t know what. And, she was non-speaking and I didn’t know how
to communicate with her and had no information from her supporter. So, I said, “Well, we
don’t know what’s going on. “Let’s just try.” So I just, I didn’t know what to do, but I just started trying things. So I sat her in front of my computer to see if she’d type, and she did type, but nothing that I could interpret. And then I tried giving her choices. That didn’t work. I pulled out, I have a
bunch of anatomy pictures, and I pulled them out and flipped through the anatomy pictures to see if she would light
up or point to anything. And, I said, “Show me how you say yes,” and observed carefully to see if she would make
a sound or make a motion or make an expression that might help me to understand how she says yes and no. And that didn’t work. So, I just said, “Touch hurt.” And she took my hand and she put it on her
right upper-quadrant, and, based solely on that communication, I ordered a sonogram
and she had gallstones. It’s a really hard diagnosis
to make without a history. And without her help, her sister didn’t know, I would have never made that
diagnosis without her help. I wouldn’t say that I always have success, but my success rate is, and
all of our success rate, is a lot higher when we try. (laughs) (audience laughs) And I’m often surprised. I’m often skeptical that
my efforts will go anywhere and, more often than not, they do. Just the effort sends a
message to the patient that makes them try harder too. So, if you’re not trying, They’re so used to being ignored. They’re so used to not having
people engage like that that there’s often a lot
of learned helplessness and they can actually
communicate a lot better than they typically do because they don’t think
anyone’s listening. So why would you try if you don’t think
anyone’s paying attention? And also, without some of that support, like, “Touch hurt,” she might not have thought that
I would have interpret her, Maybe she would have thought that, she would have been afraid that I would interpret her taking
my hand and putting it on her as an act of aggression
or something like that and would have been too afraid to try. So, we have a tool. So, many patients come without a fluent form of
expressive communication available to them. And, this is one of our newest resources, which is a Communication Toolkit, that was also developed
in collaboration with self-advocates from the
Autistic Self Advocacy Network and it includes practical advice on how to recognize good
communication supports. The components of a good
assessment that take into account sensory, motor, and cognitive impairments. It discusses how to choose
an assessment professional and how to get supports
and assessments funded. So, I hope you’ll use that. – Thank you so much for listening to us at the very end of the day. From this work we’ve learned
that our CBPR process has resulted in a highly-accessible and usable healthcare toolkit. It has the potential to
decrease barriers to healthcare, improve healthcare self-efficacy in patient-provider communication. We’re currently testing it
in some healthcare systems because we don’t, even
though things got better, that’s not really good efficacy data yet. So we’re working toward
getting real efficacy data. And changes might have been driven by changes in self-awareness
and self-advocacy, as well as changes by patient and provider
behaviors or attitudes. So the implications. Please use our toolkits. They are available for free here. The tools may be helpful to
patients with other disabilities or even just patients
with low health literacy. There’s a lot of teaching things about just how the healthcare
system works on the site. Healthcare systems should find ways to incorporate these tools
into their clinical practice. And, other groups attempting
to develop stuff of any sort from marginalized populations should consider using a CBPR approach. A big thank you to the
AASPIRE team members who are really who made
all of this happen. To the Autistic Self Advocacy Network, who’s been our partner
since almost day one. The Oregon Commission on
Autism Spectrum Disorder who was full of physicians who really helped us get
the letter in a good format. All our study participants. And, I will, at this point, just leave the links and the
tools and our contact info up. We’d love to answer questions
about anything you just heard or anything you’d like to
ask us from our experience, any of my projects. And I also have a novel
coming out later this spring. So, you can, science fiction with
a disabled heroine, so (audience cheers and applauds) you should look forward to that. (audience applauding)

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