Remarks of Jonathan M. Young
and Justin Dart
at Family Opportunity Act Press Conference
February 8, 2001
Thank you Senator Grassley, Senator Kennedy, Congressman
Sessions, and Congressman Waxman, for your leadership in
sponsoring the Family Opportunity Act.
And thank you to all of you gathered here today to advocate for
this important legislation.
Fourteen years ago, Senator Kennedy and Senator Durenberger
separately went to the Senate Floor requesting that the complete
text of a Washington Post Article, titled "I'll Never Give Up,"
be reprinted in the Congressional Record.
The article described a young man, a Senior at Walt Whitman High
School in Bethesda, MD, who broke his neck in a wrestling match.
He had been ranked first in the state in his class, and dreamed of
competing in the Olympics. But suddenly he was paralyzed from
the shoulders down; his dreams were shattered.
That young man was me.
My injury was a life-changing event for my entire family. I am
grateful that my father, who was a doctor, ensured that I got the
best possible medical care.
Through a combination of excellent treatment and my own
competitive spirit, I was able to leave the hospital after three
and a half months walking with canes, and using a wheelchair
for distances. This did not come without a price, however, as
my medical bills amounted to hundreds of thousands of dollars.
Senator Durenberger introduced the Washington Post article
about me by noting that determining the Federal Government's
role in helping individuals and families facing catastrophic illness
or accident is "one of the most important and long overdue public
debates" facing the Senate. "The real strength of this country is
our youth," Senator Durenberger said, "and our hope as citizens
and parents, is that our young people will develop the values
and have the character to lead this country to a better future."
But our nation's young people cannot lead the country if they
cannot have their health care needs adequately addressed.
After my injury, the high school's insurance company offered
me 100% medical coverage for all my present and future medical
bills if I agreed not to sue any of the parties associated with my
The offer seemed too good to be true.
Although I benefited from the settlement throughout college,
in May of 1992 I received a letter informing me that all benefits
were immediately terminated, as the insurance company had
The FBI and IRS uncovered massive fraud and the head of the
insurance company went to jail. Unfortunately, he had squandered
most of the assets he had acquired to cover catastrophic injuries,
leaving pennies on the dollar for those, like me, whose life-time
benefits were abruptly ended.
At one point I spoke with an attorney representing one of the
other high school students to see if there was any legal recourse
to recover our medical benefits.
When I called the attorney a couple years later he said he was
no longer working on the case. When I pressed for an explanation,
he said his client had committed suicide. Neither he nor his family
could sustain his medical costs.
I'm fortunate that my father had excellent insurance that could
pick up most of the unpaid medical costs and minimized my
out-of-pocket expenses until I became employed by the federal
With my health needs addressed, and freed from much of the
anxiety about health care costs, I have been able not only to
complete college, but also to pursue a Ph.D., which I will finish
this spring, publish a history of the Americans with Disabilities
Act, and serve in the White House as liaison to the disability
In the fall, I will begin law school at Yale University.
Every person with a disability deserves the same chances I have
Every parent deserves the opportunity to see their children join
the mainstream of American life.
Adam, and all of you young people gathered here today, I look
forward to coming back to hear you telling your stories about
all that you've accomplished, once we do our part and give you
the opportunities you deserve.
My disability has enhanced my life. While I would never wish
that anyone have to confront a spinal cord injury, I am a better
person because of it. It has given me a better understanding
of the world, and of the struggles against discrimination that
too many Americans face every day.
Disability respects no categories: not wealth, not status, not
gender, not race.
Anyone, at any moment, can acquire a disability.
The pervasiveness of disability makes it a national issue
requiring national action, not merely an individualized struggle.
A spinal cord injury can decimate a family's resources or we
can work together to defray the costs of disability so that the
financial impact is minimized, and individual contributions
People with disabilities whether young or old and their families
want to do the same things as other Americans work, play,
raise families, and contribute to society.
As we seek to expand our nation's prosperity, we cannot turn
our backs on the families of children with disabilities who
struggle to afford the most basic necessities.
As FDR once said: "The test of our progress is not whether
we add more to the abundance of those who have much;
it is whether we provide enough for those who have too little."
Children with disabilities all across the country can achieve
all that I have and much more, if only given the opportunity.
Let's give them that chance.
Senator Durenberger was right about the importance of young
people to our future. And today, Congress has the opportunity
to protect that future or squander it.
The Family Opportunity Act will enable thousands of families
across the country to give their children with disabilities the
health care that they need so that the entire family can make
their fullest contributions to our great nation.
On behalf of millions of people with disabilities and their families,
I say to you: Pass the Family Opportunity Act.
And now I'm pleased to bring you a message from the greatest
leader in the disability community: Justin Dart.
February 8, 2001
I know that the great majority of fifty-four million Americans
with disabilities join me in congratulating Senators Kennedy
and Grassley and Congressman Waxman and Sessions and all
supporters of the Family Opportunity Act of 2001.
This legislation is absolutely essential to empower millions
of children with disabilities to have quality healthcare without
bankrupting their families.
The Act will empower the children and their families to contribute
their full God given potential in the mainstream of free enterprise
The Family Opportunity Act will increase employment, incomes,
productivity and the tax base. Every American will prosper. Most
important, it is the right thing to do. It is keeping the pledge
of "justice for all."
Colleagues, I love you. Together we shall overcome.
Source: Fred Fay
Chair, Justice For All