[Joint House and Senate Hearing, 115 Congress]
[From the U.S. Government Publishing Office]
115th Congress } Printed for the use of the
2nd Session } Commission on Security and Cooperation in Europe
======================================================================
A Truly Inclusive Society:
Encouraging the Ability in Disability
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
SEPTEMBER 24, 2018
Briefing of the
Commission on Security and Cooperation in Europe
------------------------------------------------------------------------
Washington: 2019
Commission on Security and Cooperation in Europe
234 Ford House Office Building
Washington, DC 20515
202-225-1901
[email protected]
http://www.csce.gov
@HelsinkiComm
Legislative Branch Commissioners
HOUSE SENATE
CHRISTOPHER H. SMITH, New Jersey ROGER WICKER, Mississippi,
Co-Chairman Chairman
ALCEE L. HASTINGS, Florida BENJAMIN L. CARDIN. Maryland
ROBERT B. ADERHOLT, Alabama JOHN BOOZMAN, Arkansas
MICHAEL C. BURGESS, Texas CORY GARDNER, Colorado
STEVE COHEN, Tennessee MARCO RUBIO, Florida
RICHARD HUDSON, North Carolina JEANNE SHAHEEN, New Hampshire
RANDY HULTGREN, Illinois THOM TILLIS, North Carolina
SHEILA JACKSON LEE, Texas TOM UDALL, New Mexico
GWEN MOORE, Wisconsin SHELDON WHITEHOUSE, Rhode Island
Executive Branch Commissioners
DEPARTMENT OF STATE
DEPARTMENT OF DEFENSE
DEPARTMENT OF COMMERCE
[II]
ABOUT THE ORGANIZATION FOR SECURITY AND COOPERATION IN EUROPE
The Helsinki process, formally titled the Conference on Security
and Cooperation in Europe, traces its origin to the signing of the
Helsinki Final Act in Finland on August 1, 1975, by the leaders of 33
European countries, the United States and Canada. As of January 1,
1995, the Helsinki process was renamed the Organization for Security
and Cooperation in Europe (OSCE). The membership of the OSCE has
expanded to 56 participating States, reflecting the breakup of the
Soviet Union, Czechoslovakia, and Yugoslavia.
The OSCE Secretariat is in Vienna, Austria, where weekly meetings
of the participating States' permanent representatives are held. In
addition, specialized seminars and meetings are convened in various
locations. Periodic consultations are held among Senior Officials,
Ministers and Heads of State or Government.
Although the OSCE continues to engage in standard setting in the
fields of military security, economic and environmental cooperation,
and human rights and humanitarian concerns, the Organization is
primarily focused on initiatives designed to prevent, manage and
resolve conflict within and among the participating States. The
Organization deploys numerous missions and field activities located in
Southeastern and Eastern Europe, the Caucasus, and Central Asia. The
website of the OSCE is: .
ABOUT THE COMMISSION ON SECURITY AND COOPERATION IN EUROPE
The Commission on Security and Cooperation in Europe, also known as
the Helsinki Commission, is a U.S. Government agency created in 1976 to
monitor and encourage compliance by the participating States with their
OSCE commitments, with a particular emphasis on human rights.
The Commission consists of nine members from the United States
Senate, nine members from the House of Representatives, and one member
each from the Departments of State, Defense and Commerce. The positions
of Chair and Co-Chair rotate between the Senate and House every two
years, when a new Congress convenes. A professional staff assists the
Commissioners in their work.
In fulfilling its mandate, the Commission gathers and disseminates
relevant information to the U.S. Congress and the public by convening
hearings, issuing reports that reflect the views of Members of the
Commission and/or its staff, and providing details about the activities
of the Helsinki process and developments in OSCE participating States.
The Commission also contributes to the formulation and execution of
U.S. policy regarding the OSCE, including through Member and staff
participation on U.S. Delegations to OSCE meetings. Members of the
Commission have regular contact with parliamentarians, government
officials, representatives of non-governmental organizations, and
private individuals from participating States. The website of the
Commission is: .
A Truly Inclusive Society:
Encouraging the Ability in Disability
September 24, 2018
Page
PARTICIPANTS
Allison Hollabaugh Parker, General Counsel, Commission for Security
and Cooperation in Europe ....................................... 1
Sara Hart Weir, President and CEO, National Down Syndrome Society..2
Kayla McKeon, Manager of Grassroots Advocacy, National Down
Syndrome Society.......................................................4
Dr. Sheryl Lazarus, Director, The TIES Center......................6
John Cronin, Entrepreneur with Down Syndrome and Co-Founder of
John's Crazy Socks.....................................................8
Mark Cronin, Co-Founder and President of John's Crazy Socks........9
A Truly Inclusive Society:
Encouraging the Ability in Disability
----------
September 24, 2018
The briefing was held at 3:30 p.m. in Room 2220, Rayburn House
Office Building, Washington, DC, Allison Hollabaugh Parker, General
Counsel, Commission for Security and Cooperation in Europe, presiding.
Panelists present: Allison Hollabaugh Parker, General Counsel,
Commission for Security and Cooperation in Europe; Sara Hart Weir,
President and CEO, National Down Syndrome Society; Kayla McKeon,
Manager of Grassroots Advocacy, National Down Syndrome Society; Dr.
Sheryl Lazarus, Director, The TIES Center; John Cronin, Entrepreneur
with Down Syndrome and Co-Founder of John's Crazy Socks; and Mark
Cronin, Co-Founder and President of John's Crazy Socks.
Ms. Parker. Good afternoon. My name is Allison Hollabaugh Parker. I
am general counsel at the Helsinki Commission, also known as the
Commission on Security and Cooperation in Europe, and it's my pleasure
to welcome you this afternoon to our briefing on creating ``A Truly
Inclusive Society: Encouraging the Ability in Disability.''
As you may know, 57 million Americans are living with disabilities,
400,000 of them with Down syndrome. Almost three decades ago, President
Bush signed into law the Americans With Disabilities Act (ADA). This
provided individuals with disabilities access to the same employment
opportunities and benefits available to people without disabilities,
encouraged employers to make reasonable accommodations, required state
and local governments to make all services and programs available to
individuals with disabilities, prohibited places of public
accommodation from discriminating against individuals with
disabilities, and directed businesses to make reasonable modifications
when serving individuals with disabilities.
In so doing, the ADA has broken down many barriers blocking the
full participation of individuals with disabilities in their
communities, in the economy, and across the United States, in every
sphere in which they would like to participate. While the United States
has an exemplary system of integration, empowerment, and protection,
individuals with intellectual disabilities, like Down syndrome, have
recommended numerous further improvements to U.S. law in order to fully
realize the goals of the Americans With Disabilities Act.
This briefing will explore best practices developed federally and
locally in the United States to empower and integrate individuals with
intellectual disabilities. We'll also discuss changes that will enable
individuals with disabilities to reach their full potential. The law on
this subject is a work in process and I look forward to hearing from
our five panelists this afternoon, the first of whom is Sarah Hart
Weir. She is the president and CEO of the National Down Syndrome
Society (NDSS), which is the largest nonprofit in the United States
dedicated to advocating for people with Down syndrome and their
families. As president, she oversees the organization's mission,
vision, and administration. Ms. Weir works each day to ensure people
with Down syndrome are represented at every table where critical
decisions are made, whether it's the White House, the U.S. Congress,
the United Nations, or in state capitols across the country. Ms. Weir
has a Bachelor of Arts in psychology and political leadership from
Westminster College and a Master of Science in public policy and
management from Carnegie Mellon University's Heinz College.
Ms. Weir.
Ms. Weir. Good afternoon. My name is Sarah Hart Weir and I'm the
president and CEO of the world's largest Down syndrome advocacy
organization, the National Down Syndrome Society.
I have had the opportunity to work with people with Down syndrome
for almost 20 years and was inspired to get involved in this amazing
community from my best friend, Kasey, who happens to have Down syndrome
and lives in Kansas.
On behalf of NDSS, the leading human rights organization for all
individuals with Down syndrome, it's an honor to sit at this table
today to present to the Helsinki Commission with Dr. Lazarus, one of
our favorite NDSS #DSWORKS employment partners, Mark and John Cronin
from John's Crazy Socks, and, of course, my esteemed colleague Kayla
McKeon.
At NDSS, we believe if you're not at the table you're on the menu.
I personally want to thank the Helsinki Commission for today's
imperative discussion and lending a critical voice to a population
that, even in our great nation, the United States of America, and still
in 2018 is far more discriminated against than any other community.
Today's topic, ``A Truly Inclusive Society: Encouraging the Ability
and Disability,'' is something we live and breathe at the National Down
Syndrome Society as we strive to achieve equality for all Americans
with Down syndrome in the United States.
Our great nation's first motto, ``E Pluribus Unum,'' is embedded in
every fabric of our country's rich history. The phrase is used on the
currency, the seal of the president, vice president, the U.S. Congress,
the U.S. House, the U.S. Senate, and on the seal of our Supreme Court.
It is cemented in our country's rich history, culture, and values.
Life, liberty and the pursuit of happiness comes from the Latin phrase
``out of many, one.'' From this belief springs a unifying purpose for
our Nation: equality. Unfortunately, in the United States and around
the world, people with Down syndrome and other disabilities are not
treated as one.
At NDSS, we believe no matter your differences or your abilities
you should have a fair shot at the American dream. And we work hard
each and every day to ensure America's motto is upheld for people with
Down syndrome and that ``one'' truly means one.
At NDSS, a fourth of our staff have Down syndrome and work across
all of our programs and departments. Not a single decision within our
organization is made without their input and the input of our self-
advocates.
At NDSS, our programs--including our National Advocacy and Policy
Center here in Washington, DC, our #DSWORKS employment program, and
our health promotion and resources program--each of these programs are
dedicated to advancing proactive policies and providing invaluable
resources on issues across the lifespan, from birth to old age, and
across five key critical pillars: health care and research, education,
employment, community integration, and economic self-sufficiency.
Next year, we will celebrate NDSS's 40th anniversary. During this
time, one of the most important advancements for individuals with Down
syndrome has been an increased access to advancements in health care.
This result has led to a dramatic increase in the life expectancy for
people with Down syndrome. In 1983, it was 25. Today it's well into the
60s. And this is a result of early detection of co-occurring
conditions, like congenital heart defects, quality dental care and, of
course, inclusion.
From its origins in 1979, NDSS has been involved in so many Federal
and state advocacy efforts as well as judicial efforts that have helped
individuals with disabilities become more included in society: The
passage of IDEA that guarantees students with disabilities the right to
be educated alongside their peers in their neighborhood school; the
Americans With Disabilities Act, or ADA, that prohibits discrimination
against individuals with disabilities in all areas of public life and
the subsequent Olmstead Supreme Court decision that requires public
agencies to provide services in the most integrated settings; of course
the shutdown of Willowbrook in New York, which was brought to the
forefront of the public's conscientiousness to shut down institutions
across the country; and something we at NDSS are extremely proud of,
the landmark passage of the Stephen Beck Jr. Achieving a Better Life
Experience Act, best known as the ABLE Act, which allows individuals
with disabilities to save their own money for the future.
These accomplishments and milestones were vital to ensure
individuals with disabilities have access and adequate supports to the
basic liberties those without disabilities enjoy: education, community
integration, housing, employment, and savings.
Despite these significant advancements, we have a long way to go.
People with Down syndrome are still held back and confined to laws that
were put into place when we were still institutionalizing people with
disabilities, the life expectancy was very, very low and a time when
perceptions of people with Down syndrome were not even realized.
Still, today, individuals with disabilities still do not have
access to marriage equality. Individuals with disabilities cannot
maintain their vital benefits while working, despite--and you'll hear
from Kayla and John--being ready, willing, and able to work. Though we
fought for IDEA, many students do not have the access to inclusive
education to which they are entitled to and is the basis of life in our
schools each and every day.
Many cannot choose where they want to live and housing options are
extremely low. And many are still not economically self-sufficient,
despite ABLE accounts being open to qualifying individuals across the
Nation.
Outrageously, many are still getting paid way below the minimum
wage. We still have Section 14(c) of the Fair Labor Standards Act, a
law that was put in place in 1938, where businesses can apply for wage
certificates from the Department of Labor to pay individuals with
disabilities way below the Federal minimum wage, sometimes as low as 30
cents an hour. Something we at NDSS are advocating very aggressively
for is the passage of the TIME Act led by Congressman Greg Harper. Last
year, NDSS launched our campaign to end #LawSyndrome, to draw attention
to these issues and to advocate for change.
Down syndrome does not hold Kayla, John or any of our friends and
loved ones with Down syndrome back. It's truly these antiquated laws
that are preventing individuals with Down syndrome from reaching their
full potential. And we at NDSS will not stop until every single
American with Down syndrome has the same rights as every other
American.
One of my proudest accomplishments at NDSS is ensuring individuals
with Down syndrome are not even--not just part of our incredible team
and wonderful organization, but they are at every table where key
decisions about their future are made. When you have a seat at the
table, you have a say in those decisions and how they are made. When
it's your table, you make the decisions. This is how we end
#LawSyndrome.
I'm honored to introduce--and I know Allison will as well and let
Kayla follow--my colleague, who has not only earned a seat at the
table, she owns the table and she owns Capitol Hill.
Thank you, Allison, and the members of the Helsinki Commission and
staff for making today possible.
Ms. Parker. And thank you, Ms. Weir, for the long and hard work of
NDSS to ensure that we continue to move forward in the United States in
the advancement of human and civil rights for individuals with
intellectual disabilities.
I'd like to next introduce Kayla McKeon.
Am I saying that correctly?
Ms. McKeon. Yes.
Ms. Parker. She is the first registered lobbyist in the United
States with Down syndrome and she's a member of the Down Syndrome
Society's Self-Advocate Advisory Board where she serves as manager of
grassroots advocacy. Prior to joining the NDSS team, she worked for
Congressman John Katko from New York. Ms. McKeon is also a Special
Olympics athlete and a Special Olympics congress member. In 2011, she
competed in the Special Olympic World Games in Athens, Greece, winning
a silver and a bronze medal.
Kayla.
Ms. McKeon. And thank you, Allison.
And good afternoon. And to echo Sarah's words, thank you to Allison
and the Helsinki Commission for letting me speak today.
My name is Kayla McKeon and I am the manager of grassroots advocacy
at the National Down Syndrome Society and I am the first registered
lobbyist who just happens to have Down syndrome.
Down syndrome doesn't define me and it definitely does not stop me.
What limits me and my fellow advocates and friends with Down syndrome--
as Sarah mentioned, #LawSyndrome is a series of very old and antiquated
laws that were passed when I would not have lived past my adolescence
or even my childhood, and even if I did, I would not have left the
hospital with my parents because people with Down syndrome were still
being institutionalized. These laws were put in place when the social
acceptance of individuals with disabilities was at an all-time low.
I was lucky in my upbringing in Syracuse, New York. When I was 18
months old, my parents involved me in an early education program. I
progressed through school alongside my classmates and graduated at 18
as soon as inclusive education became possible. I was always in an
inclusive setting. I won't deny there were bumps and stumbling blocks
along the way, but my parents always thought it was best for me to be
included with my classmates and placed in settings that challenged me
to reach my highest potential. And there were times when they pushed
me, but it was only because they knew I could succeed.
I earned awards in 8th and 9th grades--character, commitment and
courage--as well as in English and math. My final grade for algebra was
in the 90s. I got a 93 in a math regent's exam. So if you are familiar,
you know how tough that was. [Laughter.]
Later, an agency known as Vocational and Educational Services for
Individuals with Disabilities, or VESID, and my high school had set up
a program to take an office technology program. It was a 6-month
certificate program for adults. They arranged it where I could do it--
go through it twice. I passed the program, earned a certificate and, as
a result, I am very fast on the keyboard. I was even the commencement
speaker.
I also attended Onondaga Community College taking some noncredit
courses. But I thought to myself, does it make sense I'm doing all the
work without earning any credits? But I like the classes, so I began
taking one class per semester for credit. I can happily say I am now
more than halfway to earning my Associate's degree. I started back in
August. I love taking classes with my peers. Many of my classmates are
a little bit younger than me, but so what?
I started advocating a number of years ago. I started advocating on
laws about the differently abled by going to elementary schools, going
to middle schools, colleges, and the schools of nursing. I try to
motivate them to do the best that they can do. My message to kids is to
persevere. I am who I am today partly because I was included with my
peers throughout my childhood.
One day in Syracuse, I met John Katko at a baseball game. He was
running for the U.S. House of Representatives. He handed me his
business card, so I handed him mine. He called me later and said if he
was elected he wanted me to come and intern for him. When he won, I
became an intern in the Syracuse office. I represented him at different
events and did office work. In June of last year, he asked me to go
with him to a disability conference in Washington. We didn't realize at
that time it was with the National Down Syndrome Society. It was there
at the end of the meeting that Sarah Hart Weir, our president and CEO
of NDSS, offered me the job of manager of grassroots advocacy. I
started last October.
With my position as the first registered lobbyist with Down
syndrome, I go to Capitol Hill and speak to many members of Congress
and their staff on issues that are very important to me. I helped lobby
to pass the original ABLE Act as a volunteer for NDSS and now the ABLE
to Work Act and the ABLE Financial Planning Act as a lobbyist. These
laws allow me and my friends, the differently abled, to have savings
accounts and meaningful employment without giving up our benefits.
We are now tirelessly working on ending #LawSyndrome. Down syndrome
doesn't stop us, it never stops us. And there are some old, antiquated
laws that hold us back. One example is the 80-year-old provision with
the Fair Labor Standards Act, known as Section 14(c) that Sarah had
mentioned. People like me are still getting paid cents an hour while
other individuals performing the same task that are paid at least
minimum wage. These issues segregate us from the rest of society. We
are still viewed as ``less than.''
Society is ready to move past these laws. When will the government
keep up? [Laughter.]
We still have a long way to go for individuals with Down syndrome
to be fully included in society. To me, having Down syndrome is who I
am, but it has never stopped me from achieving my own hopes, dreams and
passions. What I want for my life and all individuals with disabilities
is for us to be treated just like everyone else, an opportunity to live
the American dream.
Thank you. [Applause.]
Ms. Parker. Thank you, Kayla. I have no doubt that you will achieve
all that you set your heart and your mind to do.
Ms. McKeon. Thank you.
Ms. Parker. Next we have Dr. Sheryl Lazarus. She is the director of
the TIES Center at which she conducts research and provides technical
assistance on educational change that will support the integration of
all students into inclusive learning settings. She addresses barriers
to inclusion and works to build consensus and capacity among
practitioners and policymakers for sustainable inclusion. Dr. Lazarus
has published more than 200 articles and reports, including on the
instruction and assessment of students with disabilities and English
learners with disabilities.
Please welcome Dr. Sheryl Lazarus.
Dr. Lazarus. Thank you. I would like to thank the Helsinki
Commission for the opportunity to talk with you today. I'm the director
of TIES Center. TIES is funded by the U.S. Department of Education and
is the national technical assistance center on inclusive practices and
policies. Its purpose is to create sustainable changes to educational
systems so that students with the most significant cognitive
disabilities can fully engage in the same instructional and
noninstructional activities as their general education peers, while
being instructed in ways that meet their individual needs.
Expectations for students with disabilities in the United States
historically have been low, but several laws have encouraged a more
inclusive educational system. Beginning in 1975, Public Law 94-142 set
a precedent for inclusive education with its least-restrictive
environment clause. The Individuals With Disabilities Education Act of
1997, which is often referred to as IDEA, says that students with
disabilities have the right to learn the general curriculum based on
the same standards as their peers who do not have disabilities.
The most recent reauthorization of IDEA, as well as the 2015
reauthorization of the Elementary and Secondary Education Act, also
known as the Every Student Succeeds Act, or ESSA, states that education
must be designed to promote progress in the general education
curriculum.
IDEA also mandates that students with disabilities be provided with
a free and appropriate public education which includes both special
education and related services, and that students are to be educated in
the least-restrictive environment. This creates a legal presumption
that the general education setting is the default unless the child
cannot be educated satisfactorily there, even after the necessary
support is provided.
These laws and others provide the underpinnings of inclusive
education in the United States, but the real heroes are the individuals
with disabilities, their families, and advocates. They have exercised
their rights, and sometimes had to push, shove, and hold the
educational system to what the law required, though they must consider
themselves fortunate to be in a country in which individuals with
disabilities and their families have the legal right to disagree with
schools and the government.
Next, I'll discuss two critical components that support sustainable
inclusion for all students. The first is raising expectations. It's
important to note that students with the most significant cognitive
disabilities are very diverse. For example, more students with
significant cognitive disabilities can read than you might think. Two-
thirds are readers. Unfortunately, in the past, students with the most
significant cognitive disabilities often were only taught functional
skills such as how to care for themselves.
The curriculum started to change in the early 2000s when
accountability for academic performance for students with disabilities
was strengthened. As teachers introduced content similar to what peers
were learning, students with the most significant cognitive
disabilities surprised us with what they could do. We heard over and
over, who knew that these students could learn to read and do math and
social studies and science?
A second critical component that supports inclusion is what we call
communicative competence. Most students with the most significant
cognitive disabilities communicate verbally just like everyone else.
However, a few students communicate in other ways or show minimal
response to stimuli. Students who lack a consistent mode of
communication are often served in segregated educational settings
because many teachers feel unprepared to support them. A key to
successful inclusion and better outcomes is getting a communications
system in place, ideally by kindergarten or the early primary grades.
Here is an example which illustrates how a commitment to building
communicative competence helps enable students to thrive in inclusive
contexts. Jaimar Fish is a middle school student in Danville, Kentucky.
He has multiple disabilities. He did not have a consistent
communication system. He gets along well with other students, but it
was difficult for him to develop relationships with them because he
could not communicate. His educational team addressed his
communications needs by first figuring out what he enjoyed and might
want to communicate about. Then they gave him what we refer to as an
augmentative and alternative communication device. In his case, this is
a simple motion-detection switch. It is activated by his smallest
movements and translates these movements into verbal language. Now
Jaimar can respond to questions during math, reading, and other
classes, talk with his friends about his likes and dislikes, and is one
of the group.
In addition to raising expectations and communicative competence,
there are many other components of successful inclusion, such as high-
quality, accessible instructional resources and providing training and
professional development to all teachers so that they can confidently
instruct students with the most significant cognitive disabilities in
inclusive settings. Please see my written statement for additional
details.
Research has shown us the path to successfully educating all
students, including those with the most significant cognitive
disabilities. And the United States has taken some steps in that
direction, but we need to have the commitment to make sustainable
inclusion happen for all students. To improve outcomes for kids, the
behavior of adults needs to change. There needs to be shared
responsibility across educators for all students with all students
being held to high expectations. Together, we can create a future that
supports the learning of all students in inclusive settings, which will
lead to a future with communities where all individuals are valued
members.
Thank you.
Ms. Parker. Thank you, Dr. Lazarus. Thank you for the very
practical suggestions that you've both developed and shared with us
today.
Next, we have John Lee Cronin. John is a 22-year-old man full of
life and aspirations, who also happens to have Down syndrome. His love
of colorful and fun socks and desire to perform meaningful work
inspired him to found a new business, John's Crazy Socks. John is the
chief happiness officer of John's Crazy Socks. John is a graduate of
Huntington High School and a Special Olympics athlete.
John.
Mr. J. Cronin. Good afternoon. My name is John Cronin and I am the
co-founder and chief happiness officer of John's Crazy Socks. I come
here to stand up for people with Down syndrome and all people with
different abilities.
I have Down syndrome and Down syndrome never held me back. I am 22
years old and I work hard every day to show the world that people with
Down syndrome are ready, willing, and able to work. Give us a chance
and we can be successful.
You may have heard about John's Crazy Socks. We have a mission to
spread happiness. We have a good story, but we are a good business,
too. We offer 2,300 different socks. We have shipped our socks to every
state and 80 different countries. This year, we will ship over 170,000
orders and earn over $6 million. I may be cute, but I run a serious
business.
I started this business with my dad, Mark. It was my idea and I
came up with the name. My dad--my dad--believed in me and he gave me a
chance. I love my dad. I work hard every day. I love my business. And
let me tell you why I started John's Crazy Socks.
In the fall of 2016, I began my last year of school and needed to
decide what I would do. When school ended, I had received a good
education at Huntington High School. I was healthy and ready to go. I
looked around, but I saw few choices and opportunities. I knew I could
do more. I wanted a good job just like my brothers, Patrick and Jamie.
I decided to create my own--my own job. I told my dad that I wanted--I
wanted to go into business with him. I came up with the idea to sell
crazy socks because I had always worn and loved colorful and fun socks.
We opened John's Crazy Socks in December 2016. We were entrepreneurs
and we took a chance.
Now everyone wears my socks, even the movie stars, prime ministers
and presidents. We have created 35 jobs and 18 of my colleagues have a
different ability. We make films that have been seen over 4 million
times. We have raised over $135,000 for our charity partners. We are
making John's Crazy Socks a success, and we owe it to our colleagues. I
can be in my own business because I had a great teacher. I want to do a
shout-out to Dr. Erica Murphy-Jesson and Patricia Klee, my speech
teacher. I can lead my own business because I played Special Olympic
sports. I can lead my own business because my dad gave me a chance.
I want you to know what people like me can do. Give us a chance and
watch what we can do. [Applause.]
Ms. Parker. Thank you, John. I'm so glad that you took that
business risk and had the courage to create your own opportunity
because it is changing the world.
Mr. J. Cronin. Thank you so much.
Ms. Parker. Next we have Mark X. Cronin, who is the co-founder of
John's Crazy Socks along with John. He serves as the business's
president and developed the social enterprise model for the business.
Mark spent much of his earlier career in the health care field leading
management and technology firms seeking to improve health care to the
poor and strengthen doctor-patient relations. He's also led political
campaigns, published numerous short stories, and taught school.
Mark.
Mr. M. Cronin. Good afternoon. My name is Mark X. Cronin. As you've
heard, I'm John's father and partner in our business, John's Crazy
Socks.
We are here today to share some best practices, or at least our
practices, of working with people with differing abilities. And what we
do in our business is simple: We want to show what's possible, we want
to show what people with differing abilities can do if given a chance.
In John's Crazy Socks, we have built a social enterprise, so we
have a social mission and a business mission and they're indivisible.
Our social mission shows the world what people with differing abilities
can do and we give back by supporting and raising money for our charity
partners, like the National Down Syndrome Society. But we can only
succeed if we run a rigorous business. We compete with some of the
world's largest and best companies--Amazon, Walmart, Target--and we
must match or beat what they do. For us to do good, we have to do well.
And that's why we hire people with differing abilities. Doing so
serves our social mission, but it also serves our business mission. To
succeed, we have to provide great service. We do same-day shipping. We
make sure our customers are happy. And we hire people with differing
abilities because they help us run that great business. We do not hire
out of charity or altruism; we hire because it is good business.
John told you that we have been fortunate enough to create 35 jobs
with 18 held by people with differing abilities. Our starting pay is
$12 an hour, $1 more than the New York State minimum wage. Our
colleagues do not do minimum work, so we do not offer minimum pay.
Too often, people with differing abilities are not offered jobs or
they can only find work in sheltered workshops. They might be offered
positions out of pity or charity. Our business demonstrates that people
with differing abilities are just like the rest of us. They want
meaningful work where they can make a contribution and receive fair
pay. After all, that's how we got started.
When John was finishing school, healthy and ready to go, he did not
see many choices and the entrepreneur in him said great, I'll create my
own job. What does it take to hire people with differing abilities? We
simply need to focus on what people can do, not what they cannot do.
Match the skills of the worker to the job.
We operate a pick-and-pack warehouse. Our warehouse workers--we
call them sock wranglers--those with differing abilities and
neurotypicals all pass a test to prove they can do the job. No charity,
just real work.
We have no government support. We have no special programs. Yes, we
make accommodations for our differently abled, but we also make
accommodations for our neurotypical employees. We have created a
unified workplace where people of differing abilities work side-by-side
neurotypical employees. And everyone benefits. We have better
productivity, better morale, better retention.
And yet, we're talking about best practices. Small accommodations
can make a difference. We make sure everyone has an email address and
knows how to use email, even if they're not working with a computer. We
give everyone a business card as a symbol of their professionalism and
we watch as they give that out proudly to family and friends. We
schedule regular social events outside of the office for all of our
staff, like attending a chamber of commerce dinner. Having a job gives
our employees standing in the community. And these are small
initiatives, but they have a big impact on our differently abled
population.
We have learned that hiring the differently abled gives us a
competitive advantage. The United States and other industrialized
nations are now facing shortages of workers, and yet we have this
great, untapped, natural resource in the differently abled. Employers
will learn that those with differing abilities are an asset, not a
liability, and the employers who learn this lesson the fastest will be
at an advantage and have greater success.
Our governments need to change, too. We need to see the differently
abled as full-fledged citizens, people able to contribute, not helpless
beings who need pity. We need laws that guarantee the same rights,
including the same wages, as the neurotypical population. Here in the
United States, the Fair Labor Standards Act of 1938--which is anything
but fair--allows employers to pay people with disabilities less than a
minimum wage. Just because you can pay people less does not make it
right. And it may make you some extra money, but it will leave you
morally bankrupt. We are working with the National Down Syndrome
Society to support passage of the TIME Act to afford all people a fair
and minimum wage in the U.S. and elsewhere.
We have benefit programs that limit the ability of the disabled to
work. Many of our colleagues who are differently abled can only work
part time. Why? Because if they work too many hours they will lose
their Medicaid and they cannot afford to do so. Take Aliya, one of our
colleagues who has a form of autism and works as a sock wrangler. Aliya
does a great job and would love to work 40 hours a week, but cannot
because she cannot afford to lose her Medicaid. Don't we all want Aliya
to work full time? Then why have laws that limit how much she can work?
And my son, John--he does not receive benefits yet; however, when
he needs those benefits in the future, he will need to choose between
his benefits and the equity in the company he created. Do we want to
prevent people from engaging in entrepreneurship?
It is time to decouple the poor from the disabled in our means-
tested programs so that people with differing abilities can work full
time and maximize their contributions to society. We want to encourage
people to work and to pay taxes, so let's remove the disincentives.
In the end, our message is simple: It is good business to hire
people with differing abilities. John created his own future when he
created John's Crazy Socks. We need more businesses that offer a future
of meaningful work to all people. Employers here in the U.S. and around
the world will come to learn that people with differing abilities make
great employees.
John and I, we're a couple of simple guys from Long Island. We're a
couple of knuckleheads selling socks. [Laughter.] We have no special
training. We have no special talents. If we can do this, anyone can. No
more excuses. Let's show the world what's possible.
Mr. J. Cronin. I love you, dad.
Ms. Parker. Thank you, Mark. Thank you for your vision and creating
a very successful business and social enterprise model for the rest of
us to take note of and follow.
You mentioned in your statement that the minimum wage floor does
not apply to individuals with intellectual disabilities at this point.
And there is a bill that's been introduced called the TIME Act that
will address that issue. Will that bill also address the issue of part-
time work, which you also mentioned, meaning individuals with
intellectual disabilities who do not have the option to work full time
and keep their benefits? Or will that be addressed by different
legislation?
And, Sarah, please feel free to jump in.
Mr. M. Cronin. Well, I mean, Sarah's more of the expert than me.
The TIME Act will only prevent employers from paying people less than
minimum wage. To change that issue about the limits on what people can
work, the ABLE Act changes some of that on the margin, but that's a
fundamental change that would have to--we would have to change the way
we provide health insurance to working people who are disabled.
And the reason it's critical, Medicaid covers more than what
traditional health insurance pays. So even if you have traditional
health insurance, there are some benefits that are crucial to many
people with disabilities that they can only get through Medicaid.
But, Sarah, you know, you're the expert on this.
Ms. Weir. Sure. It's actually one of the main reasons we launched
our Law Syndrome campaign last October. And Mark pointed this out in
his testimony and it's exactly what we're trying to achieve with the
work we do at the National Down Syndrome Society, and that's,
essentially, we need to decouple the poor from the disabled in these
means-tested programs.
We still have very obsolete income and asset limitations that exist
as far back as the 1960s and 1970s that prevent individuals with Down
syndrome and other disabilities from keeping what they can earn and
what they can save. ABLE was a huge step forward and it doesn't solve
all of our issues, but it created a financial tool, a 529A or a 529
ABLE account to allow individuals with disabilities to save their money
in an ABLE account without putting benefits in jeopardy.
Now, really, our focus on the employment side is to address the
archaic, outdated income limitations. And we really feel at the
National Down Syndrome Society and with the partnership of businesses,
like John's Crazy Socks, $800 billion corporations like Voya Financial,
from Main Street to Wall Street, the way to do that is to essentially
eliminate the ability to pay people with disabilities far below minimum
wage. The TIME Act is one example. We know that there are other efforts
here on the Senate side to introduce new legislation to address this.
And then we're exploring opportunities to address this administratively
with the administration and look at ways to make sure that no new 14(c)
certificate holders are created in a time when the supply and demand
for sheltered workshops are the lowest it's been in, you know, recent
decades.
So there's multiple ways to do this. But from an equality and a
human rights perspective, I think there's nothing more discriminatory
than a 1938 provision that tells somebody who was born with Down
syndrome that you're far less valued in an employment setting than
anybody else.
Ms. Parker. Thank you. We'll have to probably take the additional
bills up in the next Congress because we're coming to the end of this
Congress. But it sounds like there's some great work still to be done.
I wanted to ask John, what is a typical day like for you at John's
Crazy Socks?
Mr. J. Cronin. When I get at work, I do--I handle all the--I do
videos. I do a bunch of videos, like I tell you new ones and call it
John's networking. We're doing--we're doing ``Mad Science,'' a ``Mad
Science'' show. [Inaudible.] And we're doing ``Cooking Up Happiness.''
I'm doing it with a guest with differing abilities on ``Cooking Up
Happiness.''
Mr. M. Cronin. So it's videos that you do.
Mr. J. Cronin. I do a--there's a video. I do a--I'm pulling--I'm
pulling sock records. I help pick out socks, every order. And after
that, I'm doing a video order or a video of that, and I write personal
notes, personal videos, all that. I'm doing a big engagement right now.
I'm just having fun.
And my--and mostly I like making home deliveries. If fun things are
going on--and I--[inaudible]--candy, and thinking of it is something
sweet.
Ms. Parker. Thank you, John. It sounds like you have a very busy
day doing public relations, merchandising and shipping for the socks.
And do you typically work part time, full time, does it vary from
week to week depending on how busy things are?
Mr. J. Cronin. Actually, I'm going to tell you I have work when I--
when I--I'm an entrepreneur, me and my dad. When we get up, we get in
the office around 9. And some nights--some nights, around 6, 7 at
night. We work--me and my dad work long hours. And I tell you that
because we're going two more years. We're going on vacation in two more
years. We're entrepreneurs. [Laughter.]
Mr. M. Cronin. So we work hard, huh?
Mr. J. Cronin. We work very hard and so it's very appreciated.
Mr. M. Cronin. But you like it?
Mr. J. Cronin. But, yes, I like it. [Laughter.] Yes.
Ms. Parker. Thank you, John.
Kayla, I had a question for you. You mentioned in your testimony
that ``I am who I am today in large part because I was included with my
peers throughout my childhood.''
Ms. McKeon. Correct.
Ms. Parker. And I'm wondering, what are your best memories of
inclusion during your childhood? And what are also your memories of
times when you wish you had been included more in your childhood?
Ms. McKeon. You're making me think . . . It's been a while. I
remember being in a classroom with a special education teacher and I
didn't have a one-on-one yet. But I will probably get a one-on-one
after I--sorry to say this--but I went into the woods. I was--I behaved
like I shouldn't when I was little. And so I have this bad memory, but
it was part to get a one-on-one that helped me gain independence, it
helped me build the skills I needed to get up to where everybody else
was.
And back then, I was in high school and I still had this one-on-one
who had to hold my hand in the hallways. I said, um, no, thank you,
we're going backward, I don't want to backpedal, I'm independent and I
can cross a hallway on my own. Well, they thought I needed that extra
help where I did not need it, but I needed the help in the classroom
where they were able to break down the instructions, make it easier for
me to learn. And doing things more hands-on helped me greatly. So I'm
not saying it was a bad memory, but it helped get that one-on-one that
I needed to propel me to work harder.
And one of my one-on-ones was Ms. Powers who helped me to be more
independent and got me into a club in school that I really enjoyed. And
again, it helped with the independence.
Ms. Parker. Sounds like you had the extra support when you needed
it, but also the freedom to say I can stand on my own two feet now,
thank you, when you didn't need it. So I'm glad to hear that.
Dr. Lazarus, I wanted to dig deeper into how teachers can be better
prepared to instruct students with the most significant cognitive
disabilities when they're trying to create an inclusive setting and the
student may need quite a bit of extra support.
Dr. Lazarus. What we've found is that the students, they understand
each other. They want to work together, they want to be friends, they
want to be colleagues. But it's often the adults who can get in the
way. And teachers all, I truly believe, every single teacher out there
wants what is best for students. And they also want what they--they
want to feel like they are successful as teachers. And when they lack
the skills to instruct some of their students, then they start
thinking, well, maybe this isn't a good fit for this child.
So what we really need is to create schools where all teachers have
the confidence that they can successfully instruct all students. And so
to get this, it involves teacher prep programs where all educators have
the opportunity to instruct, learn how to instruct the widest range of
students, the development of instructional materials and resources that
are easy to use and can be used with students across the range of
students.
We also need to think about administrators and how they might
support inclusion and the importance of all people in the school taking
responsibility for the learning of all students. Too often we have
silos that the special educator does this and the general educator does
that, and if we can combine where everyone in the school cares about
all students, then we will have much better places.
Ms. Parker. Thank you, Dr. Lazarus.
Before we run out of time, I want to make sure that we leave some
time for any questions from the audience or online as the case may be.
I'll give you a moment to think while I follow up with Dr. Lazarus.
How does being included in regular classrooms with peers without
disabilities help prepare students for better quality outcomes for
adult life? Why is this a key goal?
Dr. Lazarus. The early inclusion supports later inclusion. Early
segregation almost ensures that there will be segregation later in
life. That's so important to think about, what do we want in our
communities, in our country? And when we think about our schools are
preparing our future corporate leaders, our future civic leaders, our
faith leaders, and if those individuals are comfortable with--familiar
with--individuals who have a wide variety of characteristics, whether
it be ethnic diversity, English learners or individuals with
significant cognitive disabilities, we are creating communities that
value all individuals. And I just see inclusion right from the get-go
as being a really important part of that.
Mr. M. Cronin. If I could add to that--you know, at a personal
level and in our business. So John is the youngest of three sons. John
benefited from his older brothers leading him and taking care of him.
But his older brothers benefited from John and they are better people
because of it. And in our workplace--so we have this unified workplace.
We see minor miracles every day with our differently abled. But our
neurotypical staff, they're better off, they're happier. And that
diversity that we bring benefits the business. So everyone--it's not
that inclusion doesn't just benefit the differently abled, it benefits
everybody.
Dr. Lazarus. And I totally agree with Mark. That is just so, so
true.
Ms. Weir. Well, and I echo both what Dr. Lazarus and Mark said. But
I think it comes down to the treatment of people with disabilities. It
should be no different than anyone else. The way and the reason we
fight for inclusion for students with Down syndrome is so they have
access to the general curriculum, they have access to a great
education. And the expectation when they graduate from high school or
college needs to be employment, just like everyone else.
Ms. Parker. We have run out of time, unless there's a burning
question from the audience.
And if not, I will thank the panelists for bringing us both
tangible examples as well as the challenges of creating a truly
inclusive society. I am so encouraged by the success that you are,
Kayla, the success that you are, John, and the success that you are
encouraging amongst your peers and urging others in your life to
achieve by changing laws that are holding you back. And so I thank you
for being here today. Thank you for your insights.
And I hope that everyone in the audience will join me in thanking
them. [Applause.]
Ms. McKeon. And thank you for having all of us. We very much
appreciate it.
Ms. Parker. Our pleasure.
[Whereupon, at 4:36 p.m., the briefing ended.]
A P P E N D I X
=======================================================================
Good afternoon. My name is Sara Hart Weir, and I am the President
and CEO of the world's largest Down syndrome advocacy organization--the
National Down Syndrome Society (NDSS).
On behalf of NDSS, the leading human rights organization for all
individuals with Down syndrome, it is an honor to sit at this table
(today) to present to the Helsinki Commission with Dr. Lazarus, one of
our favorite NDSS #DSWORKS partners, Mark and John Cronin, from John's
Crazy Socks and of course, my esteemed colleague, Kayla McKeon.
At NDSS, we believe if you're not at the table, you're on the menu.
I, personally, want to thank the Helsinki Commission, for today's
imperative discussion and lending a critical voice to a population,
even in our great nation, the United States of America, and still in
2018, that is far more discriminated against more than any other
community.
Today's topic--``A TRULY INCLUSIVE SOCIETY: ENCOURAGING THE ABILITY
IN DISABILITY'' is something we live and breathe at the National Down
Syndrome Society--as we strive to achieve equality for all Americans
with Down syndrome in the U.S.
Our great nation's first mottos--``E Pluribus Unum''--is embedded
in almost every fabric of our country's rich history. The phrase is
used on our currency, the seal of the President, Vice President, United
States Congress, of the United States House of Representatives, of the
United States Senate and on the seal of the United States Supreme
Court. It is cemented in our country's rich history, culture and
values--life, liberty and the pursuit of happiness--e pluribus unum
comes from the Latin phrase meaning ``OUT of many, ONE.''
From this belief, springs a unifying purpose for our nation.
Equality. Unfortunately, in the United States, and around the world
people with Down syndrome and other disabilities are not treated as
one.
At NDSS, we believe no matter your differences or abilities you
should have a fair shot at the American Dream--and we work hard each
and every day to ensure America's motto is upheld for people with Down
syndrome and that ONE truly means ONE.
At NDSS, \1/4\ of our staff have Down syndrome and work across all
of our programs and departments. Not a single decision within our
organization is made without the input of our self-advocates. At NDSS,
our programs, including:
our National Advocacy and Public Policy Center
our #DSWORKS Employment Program--our Health Promotion
and Resources Program
These programs are dedicated to advancing proactive policies and
providing invaluable resources on issues across the lifespan, from
birth to old age, across five critical pillars: healthcare and
research, education, employment, community integration and economic
self-sufficiency.
Next year, we will celebrate NDSS' 40th anniversary. During this
time, one of the most important advancements for individuals with Down
syndrome has been an increased access to and advancements in
healthcare. The result is a dramatic increase in life expectancy of
individuals with Down syndrome from 25 years old in 1983, \1\ to about
60 years old today \2\--all a result of early detection of co-occurring
conditions like congenital heart defects, quality dental care and of
course, inclusion.
---------------------------------------------------------------------------
\1\ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4445685/
\2\ https://academic.oup.com/eurpub/article/17/2/221/435114
---------------------------------------------------------------------------
From its origins in 1979, NDSS has been involved in so many federal
and state advocacy as well as judicial efforts that have helped
individuals with all disabilities become more included in society:
The Individuals with Disabilities Education Act (Public
Law 101-476), or ``IDEA'' that guarantees students with disabilities
their right to be educated alongside their peers in their neighborhood
school;
The Americans with Disabilities Act (Public Law 101-336),
or ``ADA,'' that prohibits discrimination against individuals with
disabilities in all areas of public life and the subsequent Olmstead
Supreme Court decision that requires public agencies to provide
services in the most integrated settings possible;
The shutdown of the Willowbrook Institution in New York
that was brought to the forefront of the public's conscious; and
The landmark passage of the Stephen Beck Jr., Achieving a
Better Life Experience Act (Public Law 113-295), best known as the
``ABLE Act,'' that allows individuals with disabilities to save money
without it affecting their benefits.
These accomplishments and milestones were vital to ensure
individuals with disabilities have access and adequate supports to the
basic liberties those without disabilities enjoy--education, community
integration, housing, employment and savings.
Despite these significant advancements, we have a long way to go.
People with Down syndrome are still held back and confined to laws that
were put in place as long ago as the 1930's--a time where the life
expectancy rate was very, very low, a time when we were still
institutionalizing people with Down syndrome and perceptions of the
people with Down syndrome were not even realized.
Today:
Individuals with disabilities still do not have access to
marriage equality
Individuals with disabilities cannot maintain their vital
benefits while working, despite being ready, willing and able to work
Though we fought for IDEA, many students still do not
have access to the inclusive education to which they are entitled and
is the basis of a life of inclusion
Many cannot choose where they want to live as housing
options for individuals with Intellectual and Developmental
Disabilities especially are extremely limited
Many are still not economically self-sufficient despite
ABLE accounts being open to qualifying individuals across the nation
Outrageously, many are still not getting paid the minimum wage that
all other Americans are entitled to. Under Section 14(c) of the Fair
Labor Standards Act (of 1938), businesses can obtain a special wage
certificate from the Department of Labor to pay individuals with
disabilities below minimum wage, sometimes as little as thirty cents an
hour--the only group of people it is still legal to pay below minimum
wage. For purposes of conscious, inclusion and equality, this is
unacceptable.
Last year, NDSS launched our campaign to end #LawSyndrome to draw
attention to these issues and advocate for change. Down syndrome
doesn't hold anyone back but rather these antiquated laws prevent
individuals from fulfilling their potential. We will not stop until
every single American with Down syndrome has the same rights as every
other American.
One of my proudest accomplishments at NDSS is ensuring that
individuals with Down syndrome are not only part of our incredible team
and organization, but they are at every table where key decisions about
their future are made. When you have a seat at the table, you have a
say in the decisions that are made and when it's your table, you make
the decisions--this is how we end #LawSyndrome. I am honored to
introduce my colleague who has not only earned a seat the table--she
owns the table and Capitol Hill.
Good afternoon, everyone. To echo Sara's words, thank you to
Allison and the Helsinki Commission for inviting me to speak.
My name is Kayla McKeon and I am the Manager of Grassroots Advocacy
at the National Down Syndrome Society. I am the first registered
lobbyist who just happens to have Down syndrome. Down syndrome doesn't
define me, Kayla, and it definitely does not stop me. What limits me
and my fellow advocates and friends with Down syndrome and other
disabilities across our great country is Law Syndrome.
As Sara mentioned, Law Syndrome is a series of VERY old laws that
were passed when I wouldn't have lived past my adolescence or even my
childhood, and if I did, I would not have left the hospital with my
parents because people with Down syndrome were still being
institutionalized. These laws were put in place when the social
acceptance of individuals with disabilities was at an all-time low.
I was lucky in my upbringing in Syracuse, New York. When I was 18
months old, my parents enrolled me in an early education program. I
progressed through school alongside my classmates and graduated at age
18. As soon as inclusive education became possible, I was always in an
inclusive setting. I won't deny there were bumps and stumbling blocks
along the way, but my parents always thought it was best for me to be
included with my classmates and placed in settings that challenged me
to reach my highest potential. There were times when they pushed me,
but it was always because they knew I could succeed.
I earned awards in eighth and ninth grade for character,
commitment, courage, English and math. My final grade for algebra was
in the 90's and I got a 93 on my math regents' exam. If you are from
New York, you know how tough that was.
Later, an agency known as Vocational & Educational Services for
Individuals with Disabilities, or VESID, and my high school set up a
program for me to take an office technology program. It was a six-month
certification program for adults. They arranged the program for me to
go through it twice. I passed the program, earned the certificate and,
as a result, I am pretty fast on a keyboard. I was even the
commencement speaker.
I also attended Onondaga Community College taking some non-credit
courses, but I thought to myself, it doesn't make sense that I'm doing
all the work without earning any credits! But I liked the classes, so I
began taking one course per semester for credit. I can happily say I am
now more than halfway to earning my associate's degree. I start back up
later this month. I love taking classes with my peers. Many of my
classmates are a little bit younger than me now, but so what! I started
advocating a number of years ago. I started educating others who are
differently abled by going to elementary schools, then moved on to
middle schools, colleges and the school of nursing. I try to motivate
them to do the best that they can do. My message to kids in school is
to persevere. I am who I am today in large part because I was included
with my peers throughout my childhood.
One day in Syracuse, I met John Katko at a baseball game. He was
running for the U.S. House of Representatives. He handed me his
business card so I handed him mine. He called me later and said if he
was elected he wanted me to come and work for him. When he won, I
became an intern in his Syracuse office. I represented him at different
events and did office work. In June of last year, he asked me to go
with him to a disability conference in Washington. We didn't realize at
the time it was with the National Down Syndrome Society. It was there
at the end of the meeting that Sara Hart Weir, our President and CEO of
NDSS, offered me the job of Manager of Grassroots Advocacy. I started
last October.
With my position as the first registered lobbyist with Down
syndrome, I go to Capitol Hill and speak to many Members of Congress
and their staff on issues that are important to me. I helped lobby to
pass the original ABLE Act as a volunteer for NDSS and now the ABLE to
Work Act and the ABLE Financial Planning Act as a lobbyist. These laws
allow me and my friends who are differently-abled to have savings
accounts and meaningful employment without giving up our benefits.
We are now tirelessly working on ending #LawSyndrome. Down syndrome
doesn't stop us. It never stopped us. It is just some old, antiquated
laws that hold us back. One example is the 80-year-old provision within
the Fair Labor Standards Act known as Section 14(c) that Sara
mentioned. People like me are still getting paid cents an hour, while
other individuals performing the same tasks are paid at least minimum
wage. These issues segregate us from the rest of society. They show we
are still viewed as ``less than.'' Society is ready to move past these
laws. When will the government catch up?
We have a long way to go for individuals with Down syndrome to be
fully included in society. To me, having Down syndrome is who I am but
it has never stopped me for achieving my own hopes, dreams and
passions. What I want for my life and all individuals with disabilities
is for us all to be treated just like everyone else. I want to live the
American Dream.
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
Good afternoon. My name is John Cronin, and I am the co-founder and
Chief Happiness Officer of John's Crazy Socks. I come here to stand up
for people with Down syndrome and all people with differing abilities.
I have Down syndrome and Down syndrome never holds me back. I am
22-years old and work hard every day to show the world that people with
Down syndrome are ready, willing and able to work. Give us a chance and
we can be successful.
You may have heard about John's Crazy Socks. We have a mission to
spread happiness. We have a good story, but we are a good business too.
We offer 2,300 different socks. We have shipped our socks to every
state and 80 different countries. This year we will ship over 170,000
orders and earn over $6 million. I may be cute, but I run a serious
business.
I started this business with my dad, Mark. It was my idea and I
came up with the name. My Dad believed in me and gave me a chance. I
love my Dad. I work hard every day. I love my business.
Let me tell you why I started John's Crazy Socks. In the fall of
2016, I began my last year of school. I needed to decide what I would
do when school ended. I had received a good education at Huntington
High School. I was healthy and ready to go. I looked around but saw few
choices and opportunities. I knew I could do more. I wanted a good job
just like my brothers Patrick and Jamie.
I decided to create my own job. I told my dad that I wanted to go
into business with him. I came up with the idea to sell crazy socks
because I had always worn and loved colorful and fun socks. We opened
John's Crazy Socks in December 2016. We were entrepreneurs and we took
a chance. Now, everyone wears my socks, even movie stars, Prime
Ministers and Presidents.
We have created 35 jobs and 18 of my colleagues have a differing
ability. We make videos that have been seen over 4 million times. We
have raised over $150,000 for our charity partners. We are making
John's Crazy Socks a success and we owe it to our colleagues.
I can lead my own business because I had great teachers. I want to
shout out to Dr. Erica Murphy-Jessen and Patricia Klee, my speech
teacher. I can lead my own business because I played Special Olympics
sports. I can lead my own business because my Dad gave me a chance.
I want you to know what people like me can do. Give us a chance and
watch what we can do.
Good afternoon. My name is Mark X. Cronin and I am John's father
and partner in John's Crazy Socks. We work to show what is possible, we
work to show what people with a differing ability can do if given a
chance.
In John's Crazy Socks, we have built a social enterprise; we have a
social and a business mission and they are indivisible. Our social
mission shows the world what people with a differing ability can do and
we give back by supporting and raising money for our charity partners.
But we can only succeed if we run a rigorous business. We compete with
some of the largest and best companies in the world--Amazon, Wal-mart
and Target--and we must match or beat what they offer. To do good, we
have to do well.
Hiring people with differing abilities serves our social mission,
but it also serves our business mission. To succeed, we must provide
great service, so we do same day shipping and that makes our customers
happy. We hire people with differing abilities because they help us
fulfill our mission. We do not hire people out of charity or altruism.
We hire because it is good for business.
John told you that we have been fortunate enough to create 35 jobs
with 18 held by people with differing abilities. Our starting pay is
$12 per hour, $1 more than the New York State minimum wage. Our
colleagues do not do minimum work, so we do not offer minimum pay. The
sad reality is that we could pay less, much less, and many of our
workers and their families would still welcome the job because
meaningful work is so scarce. But that would be wrong. Taking advantage
of vulnerable workers may put money in the bank, but it would be
morally bankrupt.
Too often, people with differing abilities are not offered jobs or
they can only find work in sheltered workshops. They might be offered
positions out of pity or charity. Our business demonstrates that people
with differing abilities are just like the rest of us: they want
meaningful work where they can make a contribution and receive fair
pay.
What does it take to hire people with differing abilities? We
simply need to focus on what people can do, not what they cannot do.
Match the skills of the worker to the job. We operate a pick and pack
warehouse. Our warehouse workers--those with differing abilities and
neuro-typical--all pass a test to prove they can do the job. No
charity, just real work.
We have no government support and no special programs. Yes, we make
accommodations for our differing abled, but we also make accommodations
for our neuro-typical employees. We have created a unified workplace
where people of differing abilities work side-by-side with neuro-
typical employees. And everyone benefits. We have better productivity,
better morale and better retention.
And yet small accommodations can make a big difference. We make
sure everyone has an email address and knows how to use email. We give
everyone a business card as a symbol of their professionalism and watch
as they proudly give them out to family and friends. And we schedule
regular social events outside the office for all of our staff like
attending a Chamber of Commerce dinner. Having a job gives our
employees standing it the community. These are small initiatives, but
they have a big impact on our differing abled population.
We have learned that hiring the differently abled gives us a
competitive advantage. The United States and other nations are now
facing shortages of workers, and yet we have a great untapped natural
resource in the differently abled. Employers will learn that those with
differing abilities are an asset, not a liability. And the employers
who learn this lesson the fastest, will be at an advantage and find
greater success.
Our governments need to make changes too. We need to see the
differently abled as full-fledged citizens, people able to contribute,
not helpless beings who need pity. We need laws that guarantee the same
rights--including the same wages--as the neuro-typical population. Here
in the U.S., the Fair Labor Standards Act of 1938 allows employers to
pay the people with disabilities less than a minimum wage. We are
working with the National Down Syndrome Society to support passage of
the TIME Act to afford all people a fair, minimum wage.
In the U.S. and elsewhere, we have benefits programs that limit the
ability of the disabled to work. Our colleagues with disabilities work
part-time. Why? Because if they work too many hours, they will lose
their Medicaid and they cannot afford to do so. Take Aliya, who has a
form of autism and works as a Sock Wrangler. Aliya does a great job and
would love to work 40 hours per week but cannot because she cannot
afford to lose her Medicaid. Don't we all want Aliya to work full-time?
Then why have laws that limit how much she can work?
And my son John, he does not receive benefits yet. However, when he
needs those benefits in the future, he will need to choose between his
benefits and equity in the company that he has created. Do we want to
prevent people from engaging in entrepreneurship?
It is time to decouple the poor from the disabled in our means-
tested programs so that people with differing abilities can work full-
time and maximize their contributions to society. We want to encourage
people to work and to pay taxes, so let's remove the disincentives to
work.
In the end, our message is simple. It is good business to hire
people with differing abilities. John created his own future when he
created John's Crazy Socks. We need more businesses that offer a future
of meaningful work to all people. Employers here in the U.S. and around
the world will come to learn that people with differing abilities make
great employees.
John and I are a couple of simple guys from Long Island, a couple
of knuckleheads selling socks. We have no special training and no
special talents. If we can do this, anyone can. No more excuses. Let's
show the world what is possible.
[all]
This is an official publication of the Commission on
Security and Cooperation in Europe.
< < <
This publication is intended to document
developments and trends in participating
States of the Organization for Security
and Cooperation in Europe (OSCE).
< < <
All Commission publications may be freely reproduced,
in any form, with appropriate credit. The Commission
encourages the widest possible dissemination of its
publications.
< < <
www.csce.gov @HelsinkiComm
The Commission's Web site provides access
to the latest press releases and reports,
as well as hearings and briefings. Using the
Commission's electronic subscription service, readers are
able to receive press releases, articles, and other
materials by topic or countries of particular interest.
Please subscribe today.