[Thorpe] Welcome to Beyond the Data.
I'm Dr. Phoebe Thorpe.
Today's Public Health Grand Rounds Session is
about addressing gaps in healthcare for individuals
with intellectual disabilities.
Over 7.4 million Americans have an intellectual
or developmental disability.
For today's Beyond the Data, we are honored
to have a guest facilitator, Mrs. Liz Weintraub.
Liz Weintraub is a senior advocacy specialist
for the Association of University Centers
on Disabilities and hosts a weekly podcast called Tuesdays
with Liz Disability Policy for All.
Liz will be speaking with the Special Olympics chairman,
educator, and longtime advocate for people
with intellectual disabilities, Dr. Tim Shriver.
Thank you both for joining us today.
[Weintraub] Thank you Dr. Thorpe.
I'm happy to be, I'm happy to be, part of Beyond the Data
with my colleague Dr. Shriver.
CDC has a long history of Special Olympics.
Dr. Shriver, how has this partnership helped
to improve the way we measure health outcome among athletes
and in communities?
[Shriver] Thank you Liz, and thanks for the question.
It's an honor for me to be here with you at the CDC to talk
about data and talk about what's beyond the data.
For almost 20 years now the Special Olympics organization
across the United States, local programs, state level programs,
national level events have partnered with the CDC to try
to understand the health needs of people
with intellectual differences whether they be very young
or very mature and into adult life.
I think we've done a couple of things really well.
The first is we helped together communicate
to public health institutions and leaders around the country
that we have a problem.
Before we started working together, it was almost unknown
that people with intellectual disabilities had lesser health
outcomes than their nondisabled peers.
So we helped illuminate the fact that there was a problem and,
as a result of illuminating that problem, educating people
about the problem, we have begun to catalyze action.
Action at the level of understanding.
What are the problems?
What are the heart disease issues?
What are the diabetes issues?
What are the ear issues, eye issues, oral cavity issues,
posture, and life course outcomes issues?
So we've begun to illuminate these problems and help people
to study them, help people to track them, follow them,
not just for children but for all people
with intellectual disabilities.
And as we've educated people about the problems,
encouraged them to study them.
We've also begun to catalyze action to address them.
And when you think about issues like not eliminating people
for pre-existing conditions, when you look at the training
in medical schools and dental schools that's increased.
We're starting to see the entire public health ecosystem.
That means the whole range of service providers,
and educators, and care providers.
We're starting to see that whole system begin to recognize
that people with intellectual differences deserve the same
healthcare as everyone else.
So, for me, those are big outcomes and not enough
but still very positive direction.
[Weintraub] Thank you.
You have spent many years as an advocate for people
with intellectual disparity.
What changes have you seen in public health and health,
and healthcare for people with intellectual disabilities?
[Shriver] Well the truth is that question is better answered
by you than by me because you're the person who's lived these
changes in the same window of time that you
and I have been able to be on Earth together.
I grew up in an era where most people
with intellectual disabilities
by some counts almost 200,000 were in institutions, and so,
my first exposure to this population came in the form
of recreation and play as a very small child 4, 5,
6 years old I was during an era
where many parents were still being told to let their children
with intellectual disabilities go, to remove them from society.
So, it's a big change over the course of time.
If you asked me to narrow it down, what's the biggest change?
Why have schools opened up?
Why have employers begun to open up,
transportation systems, housing?
All these things have begun to change over that period of time.
The biggest shift though in my view is the shift
from seeing people with intellectual differences
as a negative, as a liability,
to seeing people as human beings.
And as the eyes of the public health institutions have opened
to see not a disease, not a disorder, not a disability only,
but to see human beings.
We've begun to see these systems treat people as human beings,
treat them as whole human beings.
People who grow up, have jobs, get married,
contribute to the community,
pay taxes all these things were unimaginable a few years ago.
So we're only beginning.
We have a long way to go in public health,
but I think we started the journey in the right direction.
[Weintraub] Thank you.
[Shriver] Do you agree?
That's the question.
[Weintraub] Yeah.
Yes, I would also say that we need to believe
in people with disability.
[Shriver] Yeah.
[Weintraub] I think that the biggest help
that people gave me was believing in myself.
If people didn't believe in me I would, I truly believe
that I would be in an institution
or in somewhere be behind a wall.
[Shriver] Yeah.
beautifully stated.
[Weintraub] Thank you.
What are some things that people with, what are somethings
that public health programs and health care can do
to make sure people
with intellectual disability are included?
[Shriver] Well I think we have a lot of work ahead of us Liz,
and I think the guiding principle should be exactly what
you just said.
We need public health institutions, the entire array,
to believe in people with intellectual differences.
So if we really believed in them,
we would understand their health conditions.
We'd study the data.
We'd understand the date of health and wellness, as well as,
the data of disease and pathology.
So we have a lot to do just to understand the data
and to capture it, to bring it together,
to use data we have but to get new data.
Secondly, if people believed in people
with intellectual disabilities,
we would train every healthcare provider in how to care
for them, and how to listen to them,
and how to see them as human beings.
Third, we would ensure that insurance systems in primary,
and secondary, and tertiary all the care systems gave the time,
the patience, the support to care for them
because people are different.
The people with intellectual differences are different,
and they bring enormously beautiful differences
to the human family.
But that requires differences in the way
in which we treat and care for them.
And then finally, I think we would shift the paradigm.
That's, that's not plain language you would remind me.
But shift the way we think from disability to ability,
from disorder to competence, from a liability to a person
who brings value to the system.
I think if we did these things, started to study the data,
change the training, insured that care was provided
and focused on cradle-to-grave life satisfaction and thriving,
it's a big concept in today's world,
then we'd have the public health system the people
with intellectual differences deserve.
[Weintraub] Thank you.
[Shriver] I think it's my turn.
[Weintraub] Yes.
[Shriver] Could I get to ask you a question?
So, you're a model for people.
You're a person with intellectual difference
who has fulfilled a lot of your dreams.
You're working, you're married, you're contributing
to your community, in the language
of today, you're thriving.
Your living a meaningful, and powerful, and joyful life
as we would all hope to live.
What advice do you have for public health
and healthcare systems to ensure that all
of those systems are more inclusive and are better capable
of producing outcomes similar to the ones you've experienced.
[Weintraub] I would...thank you Tim.
I would have to say include me, include me in my community.
I need to feel like I belong in my community.
I need to feel like I belong in the organization.
I need to feel like I belong in that doctor's office.
I'm the patient.
I'm the one that people need to talk to not my mom, not my dad,
not my provider, not a supporter.
Yes, all those people might be great people
and I do need the support
to be the best person I can be, but everyone can.
And I think that if you just include me and I feel
like I belong then that would be the best thing.
And the way that you do that is plain language.
And what I mean by plain language is language
that everyone can understand.
As you just heard, I have an intellectual disability.
I never went to college, so therefore,
I might not understand these fancy words
and big words as I call them.
[Shriver] Almost no one understands them,
so don't feel bad.
[Weintraub] But then, I need to feel like I belong.
And where I belong in the way that I have to be a part
of the conversation is to ask you to make it
in plain language, so I can feel like I belong.
And, so, but I think also belonging and I need
to feel like I belong.
[Shriver] Thanks Liz.
Well we have a lot of work to do.
We have a lot of work to do with our colleagues in the CDC,
with retraining, in fact, the entire public health system,
but many people want to know.
We meet with dentists and doctors.
I know you do all the time.
They want to do better.
If for some of them this is all new.
So you've trained them
in I think two powerful principles believe in me
and make sure that I belong.
And if I could summarize all the work we've done over 20 years
with the CDC, it has been about trying to make those calls
to action a reality in the system.
And so, we thank all of you for joining for us,
and I thank you Liz for being a model.
[Weintraub] Thank you.
[Thorpe] I'd like to thank both Liz and Tim for joining us
and for sharing the important information with our audience.
This is my last Beyond the Data, and it has been my honor
and pleasure to bring these important public health messages
to this audience.
Please look for our podcast in the future.
Thank you.