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In Conversation with NDSS

By April 28, 2022July 7th, 2022No Comments

JUSTLY Talks With Ryan Rotunda, Manager of Employment Programming for NDSS

The National Down Syndrome Society is the leading human rights organization for people with Down syndrome. In this discussion, JUSTLY Marketing Lead has a conversation with Ryan Rotundo about his work raising awareness around the value of neurodiversity in the workplace and the benefits of hiring people with different abilities. In addition, Aruna and Ryan discuss the benefits of addressing inherent biases and improving labor standards to enable people with different abilities to thrive in their work environment and earn a fair wage.

Video Transcript

all right you ready to get started then

of course

fantastic so

uh ryan rotunda thank you so much for

joining us i believe your role is head

of people at the ndss

but perhaps you can tell us a little bit

more about yourself and the role that

you have and why we’re talking to you


yeah thanks so much aruna and thanks for

having me so i will say that i am

surrounded by an amazing team of um very

qualified uh colleagues at the national

down syndrome society uh we are the

leading rights human organization excuse

me the leading human rights organization

for all people with down syndrome and we

have certain areas that we focus on

really to try to serve the greater down

syndrome community

some of those include public policy


education health wellness and my area as

you’ve mentioned of employment and so my

official title is the manager of

employment programming

and uh and in this role i get to really

sort of help individuals and family

members and even professionals sort of

at a grassroots level

through our affiliate network so we have

about 250 to 300 um local sort of down

syndrome organizations uh spread across

the united states and it’s a great way

for us to sort of

leverage that network to share

information and resources and some of

the best practice and even policy

updates that are coming from the federal

and state levels

with those individuals and those


i also get to have the great opportunity

to to speak to folks that are in the

business community who maybe haven’t had

you know a close contact or or personal

experience with someone with down

syndrome and and really get to share

what an incredible

resource they are an incredible

you know employment force that they can

be in labor force uh and things that

they can offer to their to their

community so um so that’s part of what i

do but um i’m sure we’ll get a little

bit more into that as we go through the


absolutely so talking about business um

interactions um i had a real treat in

speaking to the cronins uh john and mark

of john’s crazy socks we interviewed

them actually they were our last

interview loved love love speaking to

them turns out that they also overlap

with overlap with ndss so why don’t you

tell us a little bit about the ndss

relationship with john’s crazy songs

yeah that’s great yeah so um

john it’s funny you mentioned them

because i actually just last weekend was

um able to go take a tour of john’s

crazy socks where um where these crazy

socks are

are um you know packaged up and sent out

and put smiles on people’s faces all

across the the country so

that was a great experience but uh but

john and and mark cronin and and the

cronin family um are very much connected

to the national down syndrome society

they have partnered with us in many

different efforts they certainly are

huge supporters of some of the work that

we do around buddy walks and of course

around the employment program

i will mention that they are one of

quite a few businesses that are either

owned or operated by a person with down

syndrome that we highlight

and and really

like to showcase on our website and and

we do different things throughout the

year through social media and other

efforts uh to help promote those

businesses so

but certainly john and mark are um are

some of our our biggest fans and we are

definitely uh they’re big fans too

so um one of the things i love actually

is uh when we got to visit the the um

facility where all the socks are like i

said packaged up and everything

you know i kind of knew a little bit

about the inner workings of the business

but um some of the individuals that are

there who are employed and who um are

also folks who might be differently

abled they

they have this role and there’s several

different roles within the organization

but they have one role in particular

which i love and it’s folks who are

actually collecting the socks out of

these bins there’s over i think there’s

nearly 4 000 different designs that they

have now so so to be able to even you

know categorize and find these things in

inventory and be able to package them up

and right so um but they call themselves

the sock wranglers and that’s the name

of the group that they get to pull all

the socks together so i just i love it

and and that kind of speaks to the

business to the model to

um just the passion and that john and

mark and their crew all bring to the

table but also um just the fact that

it’s a fun environment and it provides

some incredible opportunities for people

with disabilities and through employment


another another really interesting piece

of legislation was this uh section 14c

of the fair labor standards act i know

that was another attempt to try to do

the right thing with with kind of um

maybe unexpected results why don’t you

tell us a little bit more about that

sure yeah that’s and that’s another part

of that history lesson right it’s um

it seems like the right thing to do

until it’s not

and we realize that there there could be

a better way and and so you know um the


fair labor standards act of 1938 and and


section 14c which is often referred to

as the sub-minimum wage

law is

it was basically put in place to

offer an opportunity for folks who are

differently able to be able to work and

still earn a wage that was commensurate

so often you might hear folks refer to

it as the commensurate wage law

commensurate to their um performance or

their production level right so say for

example um you know


am working next to a colleague of mine

who and this is just kind of a maybe a

better visual but who has um

one limb or one arm instead of two arms

and therefore and again this is just

sort of an example but um is producing

maybe at a rate 50 of what i’m producing


so the idea there would be that there’s

an algorithm and an equation that says

that they get paid um less than what i’m

getting paid because of

how much they’re producing right so

um and

you’re right that is it it seems like it

might make sense right until it doesn’t

and um you know there are several um

great resources out there there are

documentaries that have been done more

recently that sort of provide a little

more insight into how this has been

sort of

used over time

throughout the united states so

some organizations that employ

individuals with disabilities who

sign up with the federal government to

get a

section uh 14c uh certificate are then

allowed to sort of implement this this

commensurate wage or this um sub minimum

wage uh policy and and be able to pay

folks less than minimum wage so um

it’s been documented that folks are

getting paid um as little as 20 cents an


an hour

and you can imagine what that would

equate to in terms of you know a

paycheck it’s definitely not a living


and i think one area where um the

national down syndrome society hopes to

sort of help address this is just inform

people right help to to sort of shed the

light on the fact that you know there

may there may not be any uh explicit

wrongdoing or or malice male intent in

in having these waivers or excuse me

these certificates in place but that

there are greater opportunities for

individuals with disabilities to to live

and to work and uh to earn a a um a fair

wage for the work that they do

yeah you know um

yeah it’s just it just brings it all

home that sometimes there’s a conscious

bias where by something that you can

physically see in somebody

and the good news is we’re moving away

from that and i love everything about

that um there’s also an

unconscious bias right where you don’t

even realize that um

you you you are not giving somebody a

fair shake because of some assumptions

that have come to you based on your own

experience you know there was um a movie

called tyson’s run that was about an

autistic young man uh that we

recently had some involvement with and

it turns out that the the actor for that

movie actually had autism but the

director never knew that the director

just hired this actor because the actor

was best for the part right right and so

i think that’s really interesting i

think you’ve also shared with me some

amazing stories of people that you’ve


that were brilliant in their own right

and then as you dug into their

background you realize holy cow i didn’t

know all of these other things about

them perhaps you can share some of those

um amazing experiences you’ve had

right yeah um aruna that’s a great

recall and i guess i should share a

little bit of backstory for myself

personally as well i have an older


with down syndrome and so this is very

much you know the world that i was born

into my my parents did a great job our

parents did a great job of raising us

both with the

notion that we could achieve whatever we

set our minds to right we all needed

support in some ways and we all had

strengths in some areas that would lead

us to our goals ultimately so

so that was the world i grew up in and

it was also i think unique because

i was able to share that experience and

sort of those expectations and that

awareness with friends and colleagues

and folks that knew my sister and knew

our family um and so i considered myself

growing up i consider myself to be

pretty in tune with um you know being

being mindful of folks um with different

abilities and and not really


you know setting too many limits on what

they can achieve right well then i enter

in this role with the national down

syndrome society and

i work alongside several individuals who

have down syndrome who

i’ll just put it this way their resume

is more at a younger age than me their

resumes are more than i could hope to

accomplish in a lifetime and so in some

ways i was i i realized i had still

despite all of my experience and my

um interactions with folks with

disabilities and and seeing folks

achieve amazing things and accomplish

their career goals and build businesses

and and public speaking careers all

these things

with all of that here in this new role

i’m still finding that um you know the

sky is the limit not not that glass

ceiling that we sometimes as you said

sort of implicitly

put on a person or on a particular group


it was a great eye opening experience

and it reminded me that i um have

something new to learn every day and

that’s just that’s great i love that

part of my job

yeah there’s nothing better than being

being uh pleasantly surprised right by

learning about yourself and learning

about others

i i do think though your your background

and your support of people with all

different kinds of abilities over over

your career has been really impressive

and i think

that the support by you by the

organizations you work for your family

other people plays a large part in the

success of others right whether they

have down syndrome or something some


type of maybe quote limiting um

impact on society i i think there was a

a term that you introduced me to in

regards to these support services called

dsp and how we’ve been having some

challenges with with that um

type of support service maybe you can

explain that a little bit more to me and

refresh us on that

right yeah so

the term dsp refers to direct support

provider or direct support professional

and these are individuals or i should

say it’s it’s really a


sort of system of support and

how those

supports are paid for might vary by

state or locality but


ultimately these are individuals who

might be able to support uh someone

who’s differently abled in those areas

where they might need additional

assistance so

one example might be


creating a daily routine or managing a

schedule or

um you know even something like being

able to access

parts of of their community um that

might otherwise you know not be possible

without the additional support


it could also mean personal care right

someone who has a physical limitation

might need help with daily sort of

living tasks um

in in different ways so these direct

support for providers or these direct

support professionals are individuals

who really help someone with a different

ability do life and and achieve their

goals and

i have worked as a dsp in the past and i

had several amazing um young guys that i

worked with and we i mean it was almost

it’s almost as if they became like

family right you sort of you really do

you become a part of that family or a

part of that

um that individual’s uh journey in a in

a way that is really unique and special

the the challenge that we’re faced with

right now is that there is a it’s really

a dsp crisis and that’s sort of the

terminology that you’ll hear

today and obviously that is a trend that

is similar in other industries with um

you know labor shortages and things of

that nature

this is particularly i think um

concerning because not only is there a

labor shortage in the dsp field but it’s

there are ripple effects right so um for

example i i have a colleague who i serve

with in another organization

who um

has a direct support provider who

helps this person get dressed in the

morning and helps them

you know eat in the morning and and to

do all these sort of daily routine


tasks that we may sometimes take for

granted uh and this individual is very

active in advocacy at the state level

um and i remember being on a call it was

it was

just like a red flag i mean it was

almost like this was in our faces i was

on a call two weeks ago and uh it was


that an email had come through that this

individual was not able to participate

because their direct support

professional was not able to get to work

um because of their own personal

transportation issues

and because of scheduling and things

like that so

you can see how these ripple effects

would then be barriers for the

individuals with different abilities who

are trying to access their communities

and trying to access employment and

trying to speak up for the greater

disability community in terms of

advocacy and those things so um

definitely an issue of top concern

and it’s not just in one community it’s

really across the country

yeah so so essentially the shortage of

dsps is leading to the inability of

people that might have disabilities to

come and be productive and and so we end

up with a double whammy right two

sectors of our society that can’t really

contribute in ways that’s helpful to

themselves and also to us right and to

each other

um you know it’s kind of interesting


thinking about about productivity

i’ve heard for example

john and mark we’re talking from john’s

crazy socks we’re talking about how

having a wider range of people working

with them has really increased the

happiness level um has increased kind of

the longevity of employment right and

also therefore has increased

productivity and i think this is

something that for folks that haven’t

thought about employing a wider range of

people it’s it’s quite a nice surprise


so maybe you can tell us a little bit

more of the examples of productivity

that you’ve seen firstly and then

secondly perhaps pass along some advice

to people that might be anxious about

hiring folks that have various types of


yeah no that’s a great question i i

think i’ll just kind of

find exactly what you just said about

you know john and and mark and some of

the folks that work there i mean i think

it’s as i said before

we all have strengths and we all have

areas of need um i worked

for a man who has down syndrome and uh

had a restaurant

and um i was the general manager of that

restaurant but make no mistake he was my

boss and he was the he was the face of

in the brand of that business

um and sometimes we would receive

letters and and um i mean we would

receive questions and inquiries and and

really fan mail too from all over the


talking about how amazing the story was

and you know the overcoming obstacles

and things of that nature and um of all

that mail and all that um you know those

those things that came pouring in one

stood out to me

and um i’ll never forget it was a it was

a comment on our website it was kind of

one of those feeds that people could

just add to right so as a comment and uh

and we had some champions we had folks

who knew that business and knew the

family and knew the individual well who

would kind of like make sure to moderate

some of these comments and so one

comment came in and it was something to

be effective well does does this

individual cook all the food right

they’re not it was kind of like a

naysayer so they don’t cook all the food

and they don’t answer all the phones and

they don’t do all this stuff and then

one of our one of our champions

moderators just added real quick

well you don’t see sam walton greeting

everybody when you walk into walmart

right and this was obviously a while ago

but the point is you have people in


in their areas of strength and i think

that’s that’s what i would say to

employers as well is

you know i think it’s really easy to to

sometimes look on the surface or on the

outside and say okay

this person visibly has a difference

or something that might be limiting uh

in terms of their employability right

i think we just have to change that

paradigm and part of it is changing the

narrative right that’s part of the goal

of national down syndrome society is to

help folks understand that

that is that is just a piece of what a

person can offer to the workforce uh to

a business i will say too that you know

a lot of the barriers that we talk about

to employment for people with



barriers that are more or less external

barriers it’s not a it’s not a challenge

that that individual is facing it’s a

challenge in the system or it’s a

challenge in the process or for example

going back to the dsp question it’s a

challenge in that service system where

if they can’t get a ride to where they

need to go in a timely manner or if they

can’t have someone arrive on time to

their house to help them get dressed in

the mornings

those are not barriers to how well that

person can do the job it’s just it’s a

barrier in the system and so i think if

we really can focus on the individual

and the strengths that they bring and be

able to provide whatever reasonable

accommodations or we’ve even kind of

talked in the past aruna about

customized employment if we can find

those specific areas to help fill in the

gaps of support but also draw out more

of those strengths i think that’s a

win-win right and that’s the goal here

yeah that that’s really um

that’s really neat i mean i think on

even in a more kind of um

traditional level you know you would

never take um a mathematical analyst and

put them in a designer role in the same

way you’d never put a designer role

designer person in a mathematical

analytical role and so

those are very extreme examples but

often the fit’s not there and i love

that term customized employment because

it just really means that every single

person deserves to be set up for success

and and not everybody regardless of

whatever perceptions or knowledge we

might have about them and i think that’s

really neat so from a corporate point of

view an organizational point of view a

societal point of view we must keep that

in mind for everybody we encounter i

also think on the flip side right so in

other words

going from school into a professional

environment is a big big change for

somebody especially somebody that might

have down syndrome or autism or another

type of disability um

tell us a little bit about that

transitional period and the the changes

that that those folks would need to go

through to get ready for being in the


yeah well and and i’ll i’ll just kind of

push back a little bit and say i

remember the transition from high school

to real world was really hard for me

so so going off to college and learning

a new routine and being you know many

hours away from home and all of those

things can be a challenge i think for

for anyone of any background or ability

but but i hear what you’re saying and um

to the point they there are transition

support services um available to

individuals that qualify um i would say


that you know different

as i’ve shared with other services uh in

funding opportunities there are

different um transition supports or i

should say transition supports may look

different from one state to the next or

one locality to the next

i’ll just speak to the state of north

carolina where i’ve been an educator for

over 10 years and um can kind of share a

little bit of that personal experience

uh in in planning that transition so

um well actually let me take it to

another level so from a federal

perspective the the laws that protect

students uh with disabilities so the

individuals with disabilities education

act idea sort of outlines how an

individual will receive services and

supports i should say the structure

within which a student would receive

services and supports within the public

school setting right

and that will cover that individual

again if they qualify up until the age

of 22 if their 22nd birthday falls

within that school year so the um

the the framework of

of what’s talked about in idea is is

called an individualized education

program or individual education plan an


within that iep there is a transition

plan so

it is recommended that as early as 14

but really it’s required by law at the

age of 16 a transition plan be in place

within that student’s individualized

education plan

and this is a collective effort this is

a team effort consisting of input from

stakeholders including parents the

individual the student hopefully as the

student ages they become the director of

this plan and they’re doing a

self-directed iep

um school administration teachers who

know those students the best

you know in terms of academic

performance and things of that nature

and then other stakeholders might be

related service providers speech

pathologists occupational therapists and

even community members that represent

you know various areas of that


life and their goals so

again that transition is huge and it’s

not something that should be taken

lightly and i think that there’s there


structures in place to ensure that that

is done appropriately i think we still

miss the mark right there are still

places and times when when information

or opportunities can fall through the

cracks so again national down syndrome

society is an organization that wants to

be able to really help sort of shed

light on what is promising practice what

are some amazing resources out there for

individuals and families as they’re

navigating or beginning to think about

that transition

and then this is again the the education

program within the national down center

society really kind of touches on that

school age

but now that we have um you know a lot

more sort of i think to offer in the

employment space we’re looking at how do

we dovetail employment

and that transition conversation into

okay now what are the long-term goals

what are your goals for financial asset

development and and

job security or financial security

what are some of the long-term planning

opportunities for savings and and really

achieving those goals after after

graduation so we look at that what we

call that post-secondary transition

there are opportunities as well for

continued education and training

there are some really unique programs

all across the country that are offering

educational opportunities

in in a college setting for individuals


uh down syndrome and other intellectual

developmental disabilities so it’s a

it’s a neat time to see some of the


solutions and and programs that are

popping up and uh and we’re right there

we’re right there in the mix

i love it


my head is spinning

there’s so many there’s so much

opportunity out there right i mean and

we’ve only touched on the surface i i

want to make sure we’re respectful of

your time and our viewerships time um

maybe what we can do is uh

let’s do a little rap like in other


what are

what are the takeaways that people

should have when they after they watch

this video and is there anything in

particular that we haven’t touched upon

that’s really important for our audience

to know

yeah those are those are great questions


you know i think

going back to where we started there are

um you know a lot of things that have

changed and improved over time i think

we still have a lot of work to do

all of what we’re talking about is

undergirded by

policy there’s there are so many unique

programs and grassroots efforts to sort

of make opportunity for people with

disabilities in our communities

there are

as i mentioned before you know our down

syndrome affiliates are our parents and

family members and community

stakeholders that are have a vested

interest in the success of individuals

with down syndrome in their communities

those are all tremendous i think that

across the board we can always uh turn

our focus back to advocacy and

informing and educating policy makers on

on what our communities

are needing to be successful and to live

fulfilling lives whether it’s through

employment or

educational opportunities or even health

and wellness and some of these other um

pieces that are that are so important to

to to life and to um to the pursuit of

happiness right all of those things so i

think that you know the the biggest

takeaway is really um having the

information that’s going to help make

change possible and i would certainly of

course direct folks back to the national

down syndrome society’s website

of course social medias

social media accounts and and different

outlets where we share information on on

policy and some of our efforts in

general and of course you know who

doesn’t like a great uh shout out or

spotlight we we put some of our

business owners and and folks with

disabilities um that are just doing

amazing things folks with down syndrome

that have businesses or public speakers

or we put some of those um stories on

our social media pages and it’s just

it’ll brighten your day i mean it does

for me so

so uh if for nothing else um just just

do that and it could be i think a real

encouragement to folks

yeah thanks so much ryan you know you

make me think about

listening to him like

it’s it’s this isn’t about charity it’s

not about altruism it’s about

doing the right thing and and also just

it’s good business right a lot of a lot

of this is just about good business so

thank you for keeping us uh continually

educated uh good luck with everything

and um let’s have a follow-up chat at

some point to see how much more progress

you’ve made okay oh i love it thank you

so much aruna i appreciate you having me

thank you bye now

take care