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Let's start with a general introduction
where you tell me a little bit more
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about your organization because I don't
know much about it.
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Sure so Next for autism is an organization
that's dedicated to improving the lives
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of people with autism. And we do that by
developing and launching innovative
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programs. We have been doing that for
about 15 years and we started with the
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support of developing a charter school
that's currently in New York City.
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Certainly impacted by the COVID-19
charter school that's in Harlem and
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then replicated to the Bronx and over the
last 15 years we've developed additional
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programs for recreation and leisure and
then community living and employment.
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Again really kind of committed to quality
programming for people with autism.
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Right now, we are primarily focused on
the needs of teens and adults
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with disabilities and autism.
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How do your members, like all the
people with autism cope with these
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uncertainties and how do you
help them cope?
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That's such an important issue.
I think that we're all trying to
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engage in the best resilience we have
the strategies of self regulation, and
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trying to you know, I think those of us
that are considered typically developing,
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we're struggling as well. So for people
with autism it's helping them use some
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of those compensatory and anxiety
reducing strategies that we hope that
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they've learned. Next for Autism has
been kind of releasing some content
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digitally on here are some strategies
and you know one of the things we
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talk about is we're all working from home.
What if you are an employee with autism
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who's currently working from home and
that's a huge disruption in routine.
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So, do I know how to ask for the
appropriate support from my supervisor.
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Do I know what to do when, meanwhile
the supervisor is dealing with their own
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repertoire of challenges. But really how
do we develop those resources, that
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content support information
to those adults.
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Are there specific strategies, how do you
protect them? I don't know if like some
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of them are also in the high risk group?
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What we also think about again is what
are the effective supports that would
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allow someone to continue to engage in
their daily life to the
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greatest extent possible, effectively.
So that is making sure that they
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have their communication supports and they
have information and you know a lot of
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people with autism benefit from visual
information. Can we write things down for
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them? Can we make sure that there's lists?
I'm looking at a list right now.
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That's good for all of us. I think that's
also something that people with
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autism really benefit from. So how do we
help families that are impacted and the
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professionals that are supporting them.
And supporting people with autism
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with this disrupted routine. You know my
routine has typically been; I get up,
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I maybe go to a day program for the
day, I come home, I see my family on
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the weekends. Which now I no longer am
able to see because we're distancing in
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that way. So that is a huge routine
disruption.
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How has this whole pandemic impacted
your organization? If you tell me a little
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about your usual everyday life and
how this has changed?
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Our organization again, we have these
partner programs that we work with
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that we've developed relationships
with over the years.
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What we're doing right now is try to
support those partner programs to
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be delivering the most effective
supports possible. Those programs
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were all in person. Some of them
have gone virtual and so that's
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something that we're trying to help with
support with, were it through technical
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assistance, to financial support, all of
those things.
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So the children from the charter school
are to have the access to curriculum
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and there are people involved in the
recreation activities
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can now do that online. But some of the
programs are also community living
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programs so those programs aren't shut
down, those are homes.
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You know so how do we support them and
that was some of our effort with the
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relief fund was the protective equipment
was one of their primary asks.
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We wanted to be able to deliver that.
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Did you get any sort of feedback from
your members, like about how support
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them or did you get more questions
or emails during that time right now?
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I think there's actually more engagement,
because we're all trying to be supportive
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of each other and I think that's the
benefit of having and engaged community.
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Well, what about this and does this work?
We started a webinar series for employers
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because we knew employers were like well
I want to support my employees with
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autism but I'm not sure how. We have 100
slots every week in the webinar and those
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are free information sessions and they
are packed, every week that
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session is filled up. So you know I think
people are really hungry for information
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because they want to do it right. They
want to do the right thing.
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And looking for resources and we're able
to offer with the team at Next for Autism
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has a lot of experience, a lot of
expertise. So, we're able to offer some
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of that support to people that maybe
are engaged in the current work but
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may not have that extensive history.
We want to make sure people have
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access to the right information.
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How has your personal routine
changed because I guess you're
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at home, obviously right now. So what
else did change?
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Yes I am. Yes so here we are talking on a
computer. Which I think has become most of
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our, you know all those funny
conversations about I'm Zoomed out.
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I think that's just trying to be as
present with people as possible and
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engaging in this virtual work. I also want
to say that there has been some, I mean
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I think that people are looking for silver
lining because that makes us feel better.
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And I have heard from some of my friends
with autism, adult friends, how they're
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like, you know this is actually, you know
they're of course gravely concerned about
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health and welfare of their families and
the community and themselves, but
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they also have said, you know I really
always wanted to work from home, but
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my job didn't really afford that and now
you know this is actually working
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out quite well for me. I really like this
medium, I like having my autonomy,
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or my ability to do that. And I'm like
okay, and I think that's true of
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many individuals. Right, there's pieces
of this crisis that has allowed us a
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window into other creative opportunities.
You know there's with crisis sometimes
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comes creativity and these creative
solutions, for some, have become
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a silver lining.
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So I wanted to ask you and I don't
know if that's too personal, but
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do you want to share like your
motivation why you work
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for this organization?
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Yes, so I have worked in autism services
and supports for 30 years. A little more
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than 30 years. Next for Autism is
committed to developing quality
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programming and making sure that
people with autism have a high
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quality of life. I am someone who's
committed to social justice and I
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understand that the people with
disabilities in or current society
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are not afforded the same opportunities
and we're seeing that you know within
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the current healthcare crisis and I have
seen that in my work and I want to work
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with an organization that wants to
change that.
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So, if some of your members with
autism, if they have some high risk
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factors, are you somehow concerned?
Especially because you're in New York
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that you know those triage protocols
will affect them negatively.
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Well one of the positive aspects that
came out recently was you know we
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know that people have been alone in
hospitals and that's a heartbreaking,
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we hear the stories from popular culture
media, and it had been the protocol
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that individuals had to be alone due to
the transmission factor. And most
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recently, it has been modified so that
people with disabilities,
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people who need someone to be there
with them as their advocate and they're
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able to assist with communication and
decision making is now able to be there.
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I think that's a really important, you
know things are changing fast and I
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think that health community saw that
was not going to work.
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And that those individuals were not going
to receive the best are and we know
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our outcare providers want the best for
everyone, and so that was a modification.
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So I think that's an example of how we
need to make sure that everybody
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gets what they need and for some people
with autism and developmental disabilities
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that means that they need to have a
health advocate with them.
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You know we've been in engaging in some
communication around that.
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Here's the things you can think about,
here's your patient bill of rights.
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Making sure because things are moving so
quickly and our health system
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is so burdened. We just want to make sure
that everyone's working together.