COVID-19 Response - YAI, New York - COVID Database for people with IDD.

Do you wanna start by giving me
a little overview of

what your job is and
what you do overall?

I work as the coordinator for the
LINK department at YAI.

LINK stands for linking individuals to
necessary knowledge.

So what we do is information referral
resource for the entire YAI network.

Typically what we do is respond to
inquiries from families, professionals,

and the people we support in regard to a
whole range of different things.

What services they might be in need of,
general information, explaining the
OPWDD system.

So explaining what the office for people
with developmental disabilities does.

How to get eligibility with them.

We review evaluations for people.

Typicallly we get about 400
inquiries a week.

That's kind of the main part of my job.

In addition to that we also run some
programs out of my department including,

independent living skills program.

Which is for adults 18 and up
who are interested in learning a wide

variety of different topics.

We also have some social
skills groups, a ballet yoga program

that we provide in Brooklyn, as well as
some programs for 17 to 21 year olds

here in Manhattan.

Oh wow that's a lot. So now you've
created this database with information

about COVID-19 so who came up with
that idea?

It really started from getting a lot of
information from a lot of really good

meaning people who were sending us
resources directly related to COVID.

Typically, on a normal day in LINK we have
our IDD resource library.

Which is where we keep information that's
just general knowledge that would help

someone that has an intellectual or
developmental disability.

Things like links to different resources
at libraries, different benefits packages.

Things like that so they can research
and understand different resources

that are out there.

Once COVID began, we started getting
a lot information where people asked,

"Can you add this to
your resource library?"

And what we realized is, adding it
to the resource library

is going to make it really difficult
for families to find it.

So we started adding it to a page,
but the page became really bogged down.

The page was huge and it became
again, tedious to look through.

So the wonderful Cathy Bechler, who works
partially in my department and partially

in communications. She actually went
ahead and created a database where we

could enter all this information
that we were getting.

And it's been growing from there.

Pretty much everyday we're getting at
least 1-2 resources to add to that page.

So linksters who work in my department
will go through these resources,

determine if they're going to be
useful to the people we support.

How to categorize them so they're easy
to search for the people that are

looking at the database.

Who decided which resources to include?
And can you give me an overview of what

kind of resources you have in this
database?

We have a lot of different ones. There are
a couple different categories.

We have everything from entertainment,
information on different zoos and

aquariums that are doing
online viewing of their animals.

All the way to these are emergency
resources for accessing food, these are

emergency resources for accessing
financial help.

Information on updates that the
government is giving that are

specific to people with IDD as well as
just to the general population.

In terms of who came up with the idea.
It was really the brainchild of a couple

different people. Cathy definitely did the
infrastructure work.

In terms of determining what goes up there
a lot of times it's people sending us the

information, but then a linkster, someone
who is an information specialist or

supervisor in the LINK department is
reading through it and deciding.

What does this mean to somebody?
Is this something that's useful for our

population, should this resource
replace another one?

Maybe there's outdated information
and this is an update.

So every single day the linksters are
reading through the new information

that comes in and determining
how it should be categorized.

How to put it up there, what age group it
applies to. What kind of category.

Is it an entertainment resource?
Is it an app?

Is it a mental health resource?

Categorizing it so that it's easy for
families and professionals to really

look though it and find it quickly.

And are these resources tailored to people
with specific disabilities?

Or are they for everyone,
disabled on non-disabled?

A lot of the resources could be used
by anybody.

We do try to highlight those that are
specific to the IDD community.

There are some resources that specifically
say this is for somebody diagnosed with

autism., but in reality, a mindfullness
app is useful for anyone who is able

to get into the app. A lot of social
stories could be used with any age

of child or any diagnosis.
Although it might say specifically

that it's for someone with autism,
it doesn't mean that somebody that

doesn't have autism won't
find it helpful.

And how about accessibility?
Did you have a specific concept in mind so

this database is accessible for everyone?

So we're trying to keep the language to
typically around the second grade level.

When we're describing the information,
we want to keep it pretty basic.

We do have an entire category that is
only Espanol.

Those are all resources that are either
in Spanish or that we've been able to

translate into Spanish.

So one of my colleagues, Mara
Henriquez, she is our Spanish linkster.

So she has been doing a lot of work
translating this is what this means.

Reading through those resources that are
specifically in Spanish to make sure that

we're catering to that population.
That they have the same access

as an English speaker would have.

There was a lot of criticism around
government efforts that didn't

quite include people with disabilities.

So was this somehow a motivation for
you to create this database?

I mean definitely. We really want to make
sure people with IDD and their families

are supported in this.

There is so much going on right now and
it's really overwhelming. And when you add

in the fact that somebody is either a
person with a developmental disability

or supporting someone with a
developmental disability, it compounds

upon that and makes those stressors
more difficult.

It makes explaining COVID more difficult.
So trying to find those resources

that help break it down into language
somebody's going to understand,

and helping those parents and caregivers
stay mindful and help reduce their stress

and anxiety, and of course always helps
the people that we support.

We want to give them all the resources
we can so they stay calm and therefore

are better able to serve the people that
we are helping to support.