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.