COVID-19 Response - NEXT for AUTISM - Patrica Wright

Let's start with a general introduction
where you tell me a little bit more

about your organization because I don't
know much about it.

Sure so Next for autism is an organization
that's dedicated to improving the lives

of people with autism. And we do that by
developing and launching innovative

programs. We have been doing that for
about 15 years and we started with the

support of developing a charter school
that's currently in New York City.

Certainly impacted by the COVID-19
charter school that's in Harlem and

then replicated to the Bronx and over the
last 15 years we've developed additional

programs for recreation and leisure and
then community living and employment.

Again really kind of committed to quality
programming for people with autism.

Right now, we are primarily focused on
the needs of teens and adults

with disabilities and autism.

How do your members, like all the
people with autism cope with these

uncertainties and how do you
help them cope?

That's such an important issue.
I think that we're all trying to

engage in the best resilience we have
the strategies of self regulation, and

trying to you know, I think those of us
that are considered typically developing,

we're struggling as well. So for people
with autism it's helping them use some

of those compensatory and anxiety
reducing strategies that we hope that

they've learned. Next for Autism has
been kind of releasing some content

digitally on here are some strategies
and you know one of the things we

talk about is we're all working from home.
What if you are an employee with autism

who's currently working from home and
that's a huge disruption in routine.

So, do I know how to ask for the
appropriate support from my supervisor.

Do I know what to do when, meanwhile
the supervisor is dealing with their own

repertoire of challenges. But really how
do we develop those resources, that

content support information
to those adults.

Are there specific strategies, how do you
protect them? I don't know if like some

of them are also in the high risk group?

What we also think about again is what
are the effective supports that would

allow someone to continue to engage in
their daily life to the

greatest extent possible, effectively.
So that is making sure that they

have their communication supports and they
have information and you know a lot of

people with autism benefit from visual
information. Can we write things down for

them? Can we make sure that there's lists?
I'm looking at a list right now.

That's good for all of us. I think that's
also something that people with

autism really benefit from. So how do we
help families that are impacted and the

professionals that are supporting them.
And supporting people with autism

with this disrupted routine. You know my
routine has typically been; I get up,

I maybe go to a day program for the
day, I come home, I see my family on

the weekends. Which now I no longer am
able to see because we're distancing in

that way. So that is a huge routine
disruption.

How has this whole pandemic impacted
your organization? If you tell me a little

about your usual everyday life and
how this has changed?

Our organization again, we have these
partner programs that we work with

that we've developed relationships
with over the years.

What we're doing right now is try to
support those partner programs to

be delivering the most effective
supports possible. Those programs

were all in person. Some of them
have gone virtual and so that's

something that we're trying to help with
support with, were it through technical

assistance, to financial support, all of
those things.

So the children from the charter school
are to have the access to curriculum

and there are people involved in the
recreation activities

can now do that online. But some of the
programs are also community living

programs so those programs aren't shut
down, those are homes.

You know so how do we support them and
that was some of our effort with the

relief fund was the protective equipment
was one of their primary asks.

We wanted to be able to deliver that.

Did you get any sort of feedback from
your members, like about how support

them or did you get more questions
or emails during that time right now?

I think there's actually more engagement,
because we're all trying to be supportive

of each other and I think that's the
benefit of having and engaged community.

Well, what about this and does this work?
We started a webinar series for employers

because we knew employers were like well
I want to support my employees with

autism but I'm not sure how. We have 100
slots every week in the webinar and those

are free information sessions and they
are packed, every week that

session is filled up. So you know I think
people are really hungry for information

because they want to do it right. They
want to do the right thing.

And looking for resources and we're able
to offer with the team at Next for Autism

has a lot of experience, a lot of
expertise. So, we're able to offer some

of that support to people that maybe
are engaged in the current work but

may not have that extensive history.
We want to make sure people have

access to the right information.

How has your personal routine
changed because I guess you're

at home, obviously right now. So what
else did change?

Yes I am. Yes so here we are talking on a
computer. Which I think has become most of

our, you know all those funny
conversations about I'm Zoomed out.

I think that's just trying to be as
present with people as possible and

engaging in this virtual work. I also want
to say that there has been some, I mean

I think that people are looking for silver
lining because that makes us feel better.

And I have heard from some of my friends
with autism, adult friends, how they're

like, you know this is actually, you know
they're of course gravely concerned about

health and welfare of their families and
the community and themselves, but

they also have said, you know I really
always wanted to work from home, but

my job didn't really afford that and now
you know this is actually working

out quite well for me. I really like this
medium, I like having my autonomy,

or my ability to do that. And I'm like
okay, and I think that's true of

many individuals. Right, there's pieces
of this crisis that has allowed us a

window into other creative opportunities.
You know there's with crisis sometimes

comes creativity and these creative
solutions, for some, have become

a silver lining.

So I wanted to ask you and I don't
know if that's too personal, but

do you want to share like your
motivation why you work

for this organization?

Yes, so I have worked in autism services
and supports for 30 years. A little more

than 30 years. Next for Autism is
committed to developing quality

programming and making sure that
people with autism have a high

quality of life. I am someone who's
committed to social justice and I

understand that the people with
disabilities in or current society

are not afforded the same opportunities
and we're seeing that you know within

the current healthcare crisis and I have
seen that in my work and I want to work

with an organization that wants to
change that.

So, if some of your members with
autism, if they have some high risk

factors, are you somehow concerned?
Especially because you're in New York

that you know those triage protocols
will affect them negatively.

Well one of the positive aspects that
came out recently was you know we

know that people have been alone in
hospitals and that's a heartbreaking,

we hear the stories from popular culture
media, and it had been the protocol

that individuals had to be alone due to
the transmission factor. And most

recently, it has been modified so that
people with disabilities,

people who need someone to be there
with them as their advocate and they're

able to assist with communication and
decision making is now able to be there.

I think that's a really important, you
know things are changing fast and I

think that health community saw that
was not going to work.

And that those individuals were not going
to receive the best are and we know

our outcare providers want the best for
everyone, and so that was a modification.

So I think that's an example of how we
need to make sure that everybody

gets what they need and for some people
with autism and developmental disabilities

that means that they need to have a
health advocate with them.

You know we've been in engaging in some
communication around that.

Here's the things you can think about,
here's your patient bill of rights.

Making sure because things are moving so
quickly and our health system

is so burdened. We just want to make sure
that everyone's working together.