20 Years of the Americans with Disabilities Act

Uploaded by whitehouse on 15.07.2010

Mr. Crowley: Good morning.
It's -- it's my pleasure to welcome you to the White House.
My name is Jeffrey Crowley and I'm the Senior Advisor on
Disability Policy within the Domestic Policy Council -- or,
as we call it, DPC.
And Kareem Dale and I worked together covering the Disability
Policy Agenda here at the White House with our other DPC and
other -- other White House colleagues.
So, I do want to acknowledge Kareem for his work in pulling
this -- this event together, but I also want to acknowledge our
many colleagues at HHS who did this and I'll just name one,
and that's Henry Claypool, who is the Director of Disability
there and, obviously, is a great friend and colleague pulling
this event together but doing the hard work day after day.
So, thank you, Henry.
So, this event is just one of several activities that we're
doing as we lead up to the 20th Anniversary of the Americans
with Disabilities Act.
And, obviously, this is a huge milestone for
the disability community.
We thought this event was important because, you know,
the President's shown a strong commitment to civil rights
enforcement and the ADA as well as, you know,
that working with Secretary Sebelius and so many others,
you know, he achieved a pretty significant milestone through
the Affordable Care Act.
And so we thought today's event was really particularly
important to just talk about how these fit together,
because they really are integrally related.
So with that, I'm going to stop and just say I'm really
happy that you could join us here today.
Now, it's my pleasure to introduce Melody Barnes,
who's the Director of the Domestic Policy Council,
and I have to say that she is the whole package for
the disability community here in the White House,
because she's always there to support me and Kareem,
she has her own extensive background working on civil
rights issues, but she also seems to just really get
disability, so it's not just like ah,
this is another group -- I think she just always really
understands some of the personal struggles people face and I
think she really brings that to everything she does.
So with that, I'll just -- pleasure to
introduce you, Melody.
Thank you.
Ms. Barnes: Well, thank you so much, Jeff.
I mean, that really means a lot -- I appreciate that.
And good morning to all of you -- it is wonderful to be here
with you today, and I am honored to represent the White House and
to represent President Obama, who so strongly believes in the
civil rights enforcement around the American -- Americans with
Disabilities Act.
And the celebration of this anniversary,
as Jeff said -- this is such an important milestone
for all of us.
And one of the reasons we believe that is because the
ADA was really a Bill of Rights in and of itself,
and it's a formal acknowledgement that
those who are living with disabilities are Americans first
and deserve to enjoy all of the rights and responsibilities that
go along with being an American.
And that's what passage of the ADA 20 years ago, I think,
meant for all of us as a country.
So it is our pleasure to celebrate the --
its anniversary.
As many of you know, and, I think,
going to some of what Jeff said, I spent many years working for
Senator Kennedy in the Senate Judiciary Committee -- I was
with him for about eight years.
And one of the things that I learned was not just through
the work that I did on a day to day basis,
but actually watching him as he did his work and, as you know,
he was such a staunch advocate for this legislation.
And it was not just for the legislation in and of itself,
but everything that came out of it.
And he didn't segregate disabilities issues;
he thought about the issues of disability in a holistic way.
So as we were working on education issues,
or as he was thinking about sports in the United States,
or the arts, as he thought about our returning veterans;
in every case -- and so many other issues -- he would think
about the disability community and what it would mean,
what the impact of the pieces of legislation we were trying
to pass or the policies we were advocating for,
what that would mean for those living with disabilities and
the families -- the people who love them,
and would try to move us forward,
move the ball forward each and every day.
So I also believe that as we celebrate the anniversary,
his spirit is here with us in celebration.
Of course, as many of you know, we didn't just start the
celebration today; you know, why limit -- it's kind of like the
way I feel about my birthday --
Why celebrate on one day when you can really stretch it out?
So we've been working on this and we've been commemorating
the 20th Anniversary over a longer period of time.
This started out when White House Senior Advisor Valerie
Jarrett spoke at the Kennedy Center -- I don't know how many
of you may have been there, but spoke at the Kennedy Center --
and delivered remarks at the VSA International Festival.
And also -- some of you may know -- next Monday,
we're going to be working in partnership with the Federal
Communications Commission and the Department of Commerce to
host an event that celebrates the anniversary of the ADA and
also highlights the way that technologies have further
worked and how they've been so important in further empowering
those who are living with disabilities.
Now, of course, there's a reason why we celebrate,
and my guess is that everyone in this room knows someone who's
living with a disability, or is living with a disability
him or herself.
And that touches -- for us in the White House -- you know,
the boss -- the President, who speaks very movingly of his
father-in-law, Fraser Robinson, who was an -- very active and
athletic person, who worked in Chicago as a water -- at
a water treatment plant and was diagnosed when he was in his 30s
with multiple sclerosis.
And there are so many barriers and so many hurdles that he had
to confront as he worked to try and provide for his family,
and at the same time, he didn't have the benefit of the ADA.
He didn't have the benefit of the law and the good policies
that we've been able to move forward in the year
since its passage.
But because of your hard work and your determination,
there are so many people who now do have those benefits and those
benefits have improved their lives and the lives
of their families.
Last year, on the anniversary of the landmark Supreme Court
decision in the case Olmstead v. L.C., President Obama announced
the "Year of Community Living."
And that's a new effort to assist Americans with
disabilities and at that time, President Obama said,
"Olmstead was a critical civil rights decision that affirmed a
fundamental right for Americans with disabilities -- the right
to live independently."
And this administration has shown -- and we will continue
to show -- our commitment to addressing isolation and
discrimination affecting people with disabilities.
The President has directed Health and Human Services
Secretary Kathleen Sebelius -- who you'll hear from in just a
moment -- and Housing and Urban Development Secretary Shaun
Donovan to work together to identify ways to improve
access to affordable housing, community supports,
and independent living arrangements.
And their agencies have launched several new initiatives,
including one increasing Section 8 housing vouchers
and also enhancing interagency coordination.
HHS has also conducted listening sessions around the country to
hear the voices and the stories of all Americans.
And I use the word "hear," but as I was thinking about that,
so much of it is listening, and listening in a way that impacts
our policy and the way we think about our work so that when we
are all sitting at the table together,
we're much smarter about that and we can bring those stories
and those lessons to the work that we're doing
here in Washington.
As part of the "Year of Community Living,"
Secretary Sebelius also created the Community Living
Initiative to coordinate the efforts of federal agencies and
underscore the importance of the ADA and the Olmstead decision.
The administration has also been hard at work implementing the
Money Follows the Person Rebalancing Demonstration
Program, or MFP, which awards funding to states to increase
their use of home and community-based services for
eligible individuals who choose to transition from institutional
-- from an institutional setting.
MFP allows Medicaid funds to be used for necessary long-term
services to achieve continuity of service in transitioning from
an institutional to a community setting,
and to ensure that procedures are in place for ongoing
quality improvement in the implementation of Medicaid,
home, and community-based services.
HUD has also encouraged housing authorities across the country
to support the MFP Initiative through the establishment of
preferences for institutionalized individuals who are in need of
affordable, community-based housing.
And just last month, HHS awarded a $3.2 million
contract to establish a housing capacity building initiative
for community living.
Other federal departments and agencies have been doing their
part, as well.
This isn't just something we see as limited to HHS.
Again, it's the idea that this is -- this has to be holistic,
we have to address the whole person,
and many aspects of their lives.
So the Justice Department Civil Rights Division has taken steps
to ensure that we remain true to Olmsted's promise.
It has filed lawsuits in Arkansas and Georgia,
intervened in a case in New York,
and then filed seven amicus briefs in different states
in support of Olmsted.
In these cases, the government is fighting to ensure that
people with physical, psychiatric and developmental
disabilities can leave inappropriate institutional
living arrangements and receive services in supported housing
and other community settings.
Also at the Department of Justice,
DOJ is working with the Department of Education and
they've recently announced the publication of a joint Dear
Colleague letter, reaffirming their commitment to ensuring
students with disability have equal access to emerging
technologies in institutions of higher education.
So as we mark the 20th anniversary of the ADA,
we all believe that we have to continue doing
what we've been doing.
But we have to renew our commitment to uphold the civil
rights of those living with disabilities and fully include
all of our people in the life of our nation.
So that's why the President was so proud to add America to the
list of 140 countries that signed on to the United Nations
Convention on the Rights of Persons with Disabilities.
And Kareem was such a leader in working inside the White House
to get that done.
And the convention was the first new human rights treaty
of the 21st century.
And that's why the President lifted the ban on stem cell
research, one of the first things that he did after being
inaugurated to allow further scientific discoveries that
could one day spare others from suffering.
That's why he provided more than $12 billion in funding
in the Recovery Act for Individuals with Disabilities
and Education Act.
And that's why he signed into law the Christopher and Dana
Reeves Paralysis Act.
I know that so many of you, there's so many unsung heroes.
And as I mentioned Senator Kennedy,
who can't be with us today, but who joined with us in
celebrating this anniversary, who are proud of the work that
we've done, and want us to continue to work together to
make sure that we can fulfill the promise of the ADA and the
promise of the policies that have been built around it.
Because we know that we are making progress,
but that we can do so much more.
So thank you for being with us.
I hope you enjoy the rest of our program.
I know we're going to hear from so many interesting
people here today.
But at this point, I want to turn the program over to
Secretary Kathleen Sebelius, who is such a tremendous leader on
this issue, as she was in her home state of Kansas,
and is here now as the Secretary of Health and Human Services.
Secretary Sebelius.
Secretary Sebelius: Thank you.
Well, thank you, Melody, not only for that kind introduction,
but certainly for your leadership in
the Domestic Policy Council.
And in addition to Henry being here,
we have several other of our great HHS leaders with us,
because we see this as an initiative that really requires
leadership from all facets of the Department of Health
and Human Services.
You know, the passage of the Americans with Disabilities Act
20 years ago wasn't just a historic victory for equal
rights and a milestone of American history, it was also,
as those of you who fought for it remember,
a great legislative achievement.
It took the whole disability community banding together,
legislators from both parties showing unusual courage and
years of hard work.
This didn't just happen overnight.
And the final bill actually was more comprehensive than anybody
had dreamed it could be.
It broke down barriers in the workplace and in housing and
schools and shopping malls and telecommunications
and public transportation.
But there was one key form of discrimination allowed to stand,
and that was in the health insurance market.
The discussion early on in the debate was should we tackle
that, too, can we have that as part of this act?
And it was seen as something that was impossible to include
in the bill.
So it wasn't just an oversight.
There were lots of debates and arguments about could you pass
the ADA 20 years ago with the inclusion of a dramatic change
in health insurance, and the decision was no.
So unfortunately that piece was removed from the bill
along the way.
So in March, when the President signed into law the Affordable
Care Act, the final piece of the ADA was really put in place.
And I think it's unfortunate that it took another two
decades, but it's an enormous step forward that we now stand
at the brink of a whole new day.
After years of debate, finally fulfilling the full dream of
the ADA is so important.
And I think the Affordable Care Act really took a lot of the
values of the ADA, promoting fairness, empowering consumers,
giving people new choices, and applied it to an area where if
you think about Americans living with disabilities,
they need it the most, which is really control over their
own health care.
Every American is going to be a beneficiary of the health
reforms, but because over the last few decades,
the Americans with disabilities have been more likely to be
mistreated by insurance companies or fall into health
insurance coverage gaps, or lose their coverage when they need it
most, there's no question that the Affordable Care Act will
indeed help those with disabilities more significantly.
It does more to give Americans control over their lives,
and particularly those with disabilities control over those
lives than any legislation since the ADA was passed.
Some basic fairness is going to be restored to
the insurance system.
For years, companies have been able to pick and choose who got
coverage, what was covered, and who could be locked out or
priced out of the market.
And typically, anyone with an illness or sickness
had two choices.
One was a plan that often was priced way
out of people's reach.
And the other might be a plan that didn't cover the treatments
they needed in the first place.
Neither choice very satisfactory.
So with the Affordable Care Act starting this year,
those changes begin to happen.
Plans that will be offered after the fall of this year will have
to start right away to cover children with disabilities.
Children with pre-existing conditions can no longer be
excluded from their parents' plan,
and that's a big step forward.
That will apply to adults by 2014 when we create
the new marketplace.
But in the meantime, there's a sort of bridge strategy,
an additional pre-existing condition pool that will be
available in every state in the country to offer one more choice
to those adults who have pre-existing conditions.
We have a brand new website, which is, again,
a new consumer tool that is pretty cool, I must admit.
But also, I'm a believer that transparency does provide
competition in and of itself.
It's a good market strategy.
So for the first time ever with healthcare.gov,
individuals can go on the website,
put in a little personal information, where you live,
what age you are, what your health status is,
and instantly available are all the public and private
plans to choose from and what the eligibility criteria is
and how to get enrolled.
A lot of people really don't know what their options are,
don't know that they may be eligible for programs,
and I think this is an enormous step forward.
By the fall of this year, that website will also
include cost information.
So you actually could do shopping on -- at your kitchen
table or with a family member before you get pressured by
an insurance agent to buy something.
You can really figure out what the strategies are.
We thought it was important when we put together scenarios on
that website to do some profiles.
And one of the profiles is an individual with disabilities
that can walk through all of the choices and options.
Because we thought it was critical,
wherever people lived in the country,
that they had a way to get a profile of what was indeed
available to them, both in terms of the public program
and the private market.
So it's a powerful new tool.
Transparency, some information, to give Americans across the
country, but particularly Americans with disabilities
some key information about taking back some control over
their own health care choices.
This year also the new Patients Bill of Rights goes in to effect
starting this fall.
The President felt it was very important to capture a series of
initiatives as we built toward the new market that made it
available to individuals the kind of health insurance that
they rely on and need.
So starting this year insurance companies will no longer be able
to put a lifetime limit on the benefits provided.
It can no longer conduct business with using the somewhat
despicable policy of rescissions where technical error or a
billing error might bounce somebody out of a program,
typically after they begin using their health benefits
the company goes back and tries to discover some way
to discontinue the policy.
Those practices will stop once and for all in this country and
never be allowed to happen again.
And for those of you who have ever fought with an insurance
company, something that I made my business to do for eight
years as Insurance Commissioner, it establishes a basic
principle: If you do the right thing and pay your bill and
purchase a policy in good faith, we expect the insurance
companies to do right by you.
That's why you buy insurance in the first place is to use it
when you need it and the rules need to have some fairness and
equity about them.
The protection will apply to nearly all plans this fall.
And but there are still gaps in the health insurance system
that needed to be addressed separately.
So you'll hear in a few minutes from one of our guests today,
but the situation that a number of young adults find themselves
in, in this country, where graduating from high school
or reaching -- I mean, from college or reaching a birthday,
often 21 or 22 depending on what state you're living in,
was good news on one hand.
On the other hand, it meant that folks lost
their health insurance.
And in this job market, often did not have a job that came
with health insurance if they had a job at all.
If you are a young adult with a preexisting condition or a
disability, that condition, that situation of being locked out
or priced out of the market is extremely difficult and
potentially very, very dangerous.
So the benefit of having young adults be able to stay on their
parents' plan until age 26 couldn't have come at
a better time.
And again will help all young Americans,
a third of whom are uninsured right now,
but particularly will help those younger adults who
have a preexisting condition.
Medicare beneficiaries begin to get a break starting this year
on the prescription drug purchases.
And again, you know, there was a huge gap in the Medicare Bill
when it was originally designed which is that it didn't include
a drug benefit.
So you had sort of guaranteed insurance for seniors but
without the prescription assistance they needed.
Unfortunately when Congress passed the drug benefit,
added it to Medicare, it had a design flaw,
a serious design flaw which was that after you used up to about
$2,000 in your drug benefits, you then got to pay a hundred
percent of the additional prescriptions on your own on
the so-called doughnut hole where you didn't have any
further help and it applied again to people who found
themselves in that condition.
And there are 8 million seniors in America who hit the doughnut
hole every year, are those seniors who use the most
prescription drugs.
So just the people who need the benefit the most are the ones
who actually suffered from this situation.
So over time that so-called doughnut hole,
the gap in coverage, is closed altogether,
but starting this year seniors get a $250 rebate check.
Next year they will see a 50% decrease in the cost of those
drugs in the doughnut hole.
Medicaid will eventually be expanded when we have the new
marketplace which allows a number of Americans with
disabilities who may not meet the standards in the Social
Security Act to get a health plan that provides for a range
of benefits.
Today, later today, I'm going to join the First Lady in
announcing that we are putting into place the regulation that
will help to eliminate the co-pays for preventive service
like cancer screenings and access issues because what we
know is that having a financial barrier for preventative care
is often a barrier that's too high for people.
And consequently we have way too many folks who end up in
a life-threatening situation or with a chronic disease that
could have prevented it in the first place.
The Food and Drug Administration is working with the U.S.
Access Board on new accessibility standards
for preventative services.
There is no reason at all that a mom has to go without
a mammogram just because none of the machines in her area
is suitable for a woman in a wheelchair.
We need to make sure that accessibility is not an
additional barrier.
So the reforms that go into place right away are going to
knock down barriers that have prevented Americans with
disability from getting the health care they need.
They shift the balance of power from insurance
companies to consumers.
And they give all Americans better choices.
There are other areas, though, of the new law beyond just the
health insurance market and that change is pretty dramatic that
are important for Americans with disability although they have
gotten a lot less attention, the expansion of long-term
care services and supports.
Over the last few decades, advances in medicine have
allowed Americans to live longer and more independently with
conditions that 20, 30 years ago would have been fatal or
so debilitating that you had very few choices.
And often the health care system hasn't kept up
with those changes.
So the Affordable Care Act accelerates the progress that
we've made to give Americans better long-term care choices.
Expanding the money follows the person.
Rebalancing demonstration program.
And again we have a special guest here who's going to talk
a little bit about what that means on an individual basis.
But over the last few years that program has allowed more than
8,000 people in 30 states to transition from institutional
settings to their home communities where they have
greater satisfaction and actually lower costs of care.
And under the new law we're extending that program through
2016 with a $2.25 billion in new funding that will be critical to
again allow individuals to make choices on their own.
Beginning next fall, the Affordable Care Act creates a
Community First Choice option which gives states an enhanced
match so they and other community-based services can be
offered alongside nursing home and institutional services.
With me today is Kathy Greenlee who is our Assistant Secretary
on Aging who led this effort as the Secretary on Aging in Kansas
and is in a perfect place to help this initiative expand;
works very collaboratively with Henry Claypool.
And we think this is a huge option for people that will
expand a lot of opportunity.
The bias in Medicare -- I'm sorry -- the bias in Medicaid
toward moving people into institutions is really left over
from a time where it was harder for people to live independently
and policies which often failed to take into account people's
preferences or choices.
The money was just placed in one spot.
So the Affordable Care Act we're committed to providing
new incentives that gives states opportunities to
continue rebalancing and to give Americans who want
choices more choices in long-term care services.
To that end the new law also has a new self-funded voluntary
insurance program for long-term care and supports.
A policy that was championed for many years by Senator Kennedy
and I know Melody worked on that, the Class Act,
debated often in the Senate but never passed and it has
now become the law of the land thanks to the signing of the
American -- I mean, thanks to the Affordable Care Act.
So too long folks have been shut out of the private
long-term insurance market and had very few choices.
And this will give an opportunity to build
a fund and use that for a whole variety of services.
And we really look forward to standing up that program as one
of the main initiatives that is underway and getting input and
feedback along the way on services and supports that
will be essential.
So the law is structured in a way that the reforms go into
place over a period of years.
But across the country Americans with disabilities are already
seeing tangible benefits.
We're so pleased to have two special people here
with us today, Teresa Hammonds' son Quentin,
suffered a traumatic brain injury when he
was four weeks old.
After he spent -- and he spent his first six years in a
children's nursing home.
Teresa wanted her son to live at home,
surrounded by family and friends who loved him.
So she worked through the Money Follows the Person Program which
provided Quentin with an accessible home and ramp,
with bedding and clothes, with furniture and more.
Everything he needed to get the same high level of care that he
got in his nursing home.
Because of the program last December,
Quentin was able to come home, and now you're going to hear
from Teresa about how this change has helped
Quentin thrive.
Before I bring her up I just want to mention that these are
exactly the kinds of improvement choices that we're trying to
give all Americans with the Affordable Care Act.
When the ADA passed, some people asked questions like why would
employers need to put an elevator in if they had
six or seven floors in the office building.
After all, couldn't you just put everybody with a disability on
the first floor, avoiding the cost of the elevator?
And the answer really is pretty simple.
In this country, we believe that no one should be limited to one
floor, should have access to all the floors available to them
through all the choices available to them,
and when there are other options available;
those options need to be available to all Americans.
Everyone should have the freedom to make the best choice for
themselves and their family, and the Affordable Care Act moves us
in that direction.
You're also going to hear in a few minutes from Tina Westra
from Grand Rapids, Michigan.
Tina is 22, and like a lot of young Americans,
including my two sons when they graduated from school,
her first thought after graduation was how is she
possibly going to get health insurance.
And for Tina, that carries an additional burden,
because Tina lives with epilepsy.
So she found a job in Virginia, but couldn't find any health
insurance except a very limited policy, and again,
thanks to the Affordable Care Act and her family plan she
now can take the job that she wanted and live independently,
knowing that her health situation is well taken care of.
So the promise of the Affordable Care Act is fulfilling the
promise of the Americans with Disability Act.
It's an integral part of an unfulfilled gap in the plan,
and one that 20 years later we are thrilled to be able to put
in to place.
You all worked on the passage of the original bill and your
work wasn't finished.
We then appreciated your help and support in passing the
Affordable Care Act, but that work isn't finished.
We will continue to put the pieces in place that make these
choices available to everyone.
So I would like to ask Teresa to come up and share your story
about Quentin, please.
Ms. Hammonds: Hello. My name is Teresa Hammonds.
I'm here today to talk about my son Quentin.
I believe it takes one person, one person standing for a child
to advocate for their life -- to advocate that their life should
be something more than what it is.
Before Quentin found his one person,
my son lived in a nursing home.
He lived there as a result of a severe traumatic brain injury as
an infant that left him with severe medical needs.
I did not know how I could meet his needs on my own and I was
discouraged from trying to.
I was always told that there was no resources
for me and my family.
I had, I lived two hours away from the nursing home and I
missed my son every single day.
I moved to live closer to him and visited as much as I could,
but even that wasn't enough.
While my son was at the nursing home I was told
that he was blind, vegetative, and that any response he made
was due to a seizure.
I did not have a chance -- he did not have a chance to learn,
to feel loved, or develop as other children do when living
in a nursing home.
For nearly six years I was made to feel that I didn't even know
my own son.
Someone always knew him better than me.
I was told he should never have been resuscitated,
that he did not understand anything,
that he couldn't even enjoy the outdoors.
I was sick of being told that.
I kept telling the nursing home and caseworker that I wanted to
bring my son home, even though they didn't believe
it would be possible.
Eventually I was referred to Brain Injury Services and began
working with Brooke and Esther.
I didn't know at that time, but Brooke would become Quentin's
one person, the person who would stand up for him,
and we would work together to get him the life he deserves.
Brooke helped us access the technology assistance waiver and
the money that follows a person program and coordinate all
Quentin's community-based needs.
It only took about four months of planning after
waiting for six years.
Quentin was able to come home to live with me and his brother and
we are now a family.
Quentin has been living at home for over six months
with no medical complications.
This is a huge accomplishment for my little boy,
who was said to be too medically fragile to
leave the institution.
What has happened over this past six months is nothing
short of a miracle.
As a result of receiving homebound education,
his eyesight was checked and it turns out he is not blind.
He sees color, light and shapes, and he's only diagnosed
as being nearsighted.
We had an assistive technology evaluation that demonstrated
his clear response to stimulus, stimuli,
and his ability to physically respond to verbal commands.
He can lift his arms, focus his gaze,
move his arms -- I'm sorry, move his eyes,
and center his head when asked to do so.
Quentin's latest trip to the Pulmonary Lab shows that he's
starting to breathe more on his own,
resulting in a reduction of his ventilator settings.
These changes have sparked plans that Quentin be allowed to
attend school two days a week in the fall and be educated
with his classmates.
My son, who was labeled as blind,
vegetative and non-responsive while in an institution has
shown us that he does see, and he can respond perceptively
to verbal commands.
I'm overjoyed to have my son home with me.
I take him for walks, we go to stores,
we even went to see -- I'm sorry.
We even went to see 4th of July fireworks in our community.
His little brother -- his little brother says that Quentin is his
best friend and Quentin is the love of his life.
Now I know what's best as Quentin's mom.
I knew my son -- my son is not vegetative.
He is responsive, and he's very much -- he is very much -- he's
very like every child living within the walls of an
institution, they can live in a community.
Though many people worked hard to bring Quentin's home,
Quentin's accomplishments since coming home are a true testament
to his spirit and his abilities.
Quentin clearly has taken over and has shown everyone that he
is capable of the right -- capable with the right support
and with family around him.
Thank you for giving me a chance to share my story.
Secretary Sebelius: Now I'm going to turn it back over to Melody Barnes.
Ms. Barnes: Well, Teresa, thank you so much for sharing that story.
Clearly it has moved all of us, including me,
who then had to stand up and say something.
I now want to turn this over to Tina Westra, who is 22.
I remember being 22 once.
It's a wonderful time.
And Tina's going to share with us her story and how her life
has been changed by the Affordable Care Act.
She's from Grand Rapids Michigan.
I went to law school in Ann Arbor, Michigan.
Go Blue.
And Tina, if you'll come forward and please share
your story with us.
Thank you.
Ms. Westra: Thank you. As she mentioned, I am a recent college graduate,
and I think I can speak for most college seniors when I say that
the weeks or the months leading up to graduation are some of the
most anticipated months, and also some of the most
stressful months for seniors.
They're filled with excitement because we're excited for
graduation and the prospect of a new chapter in life,
but also anxiousness, because there's the reality that
there's a potentially unknown future for us,
and also for some of us it means that we actually have
to become "grown-ups."
In my case I felt a little bit more at ease because I had a job
lined up after college and I was going to be working out of state
privately for a family, and there were many things about
the job that appealed to me.
So when I looked at the job description I thought it looked
good, and I liked the idea of working out of state,
and on top of that probably one of the most logical reasons
for me that it looked appealing was that it
offered me health insurance.
And as a person with epilepsy, that has always been something
at the forefront of my job search.
Because it is key to my health that I have access to my
medication and that I am able to see my neurologist
on a regular basis.
So I was really excited about this, and without my insurance,
I recognize that the cost would be astronomical,
but my excitement was very short lived because when I looked into
the plan further I realized that I would no longer be able to see
my current neurologist.
Now it might seem like a simple task to find a neurologist,
you can just choose someone out of a list,
but I hope you can kind of put yourself in my shoes for a
little while and see where I'm coming from.
My -- I was diagnosed with epilepsy my freshman year of
high school, and throughout the four years of high school that
I went through, I went through two neurologists,
and both of them put me on a variety of
different medications.
And while I went through periods of time where I
was seizure-free, I was not living my life,
because the side effects of my medication were so overwhelming
that I couldn't even carry out my day-to-day activities.
I -- I was sleeping half the -- I would get home from school,
and I would sleep from the time that I would get home until
dinnertime, I would wake up long enough to eat dinner,
and then I would go to sleep until the next morning.
And I was missing days of school because my vision was so blurred
I couldn't see the board.
Finally, I found Dr. Tanner, and she was the third neurologist I
had found -- or that I had tried,
and she was the first person who finally understood that being
seizure-free and having my epilepsy under control didn't
just mean being seizure-free, it meant, you know,
being able to actually live my life and the life that other
people my age were living.
It meant that I could go to college and that I could do the
things that I wanted to.
I love rock climbing, and though it doesn't exactly work well for
people with epilepsy, I needed to have my seizures under
control to be able to do that.
And she knew that I wanted to have my driver's license.
She took me as a whole person into consideration.
And after being a patient of hers for three years,
she knows not only my health history,
she knows my personal history, and that's not something that
you can get just by choosing someone out
of a list or at random.
And thankfully I don't have to now.
Just prior to moving to Virginia,
which is where my job is, I found out that I would be able
to be covered by -- continued to be covered by my mom's
insurance, and which was providing me with this just
amazing sense of relief, because not only would I be able to
continue to see Dr. Tanner, but another piece of this is that my
medication is very expensive.
I need to take two name-brand medications,
and I've tried taking the generic brands,
which -- and the name brands are very expensive.
And if I were on a different insurance plan,
I would be working to pay for my insurance and to pay
for my medication with very little to live on.
So with those things in mind, I'm so thankful to be able to be
covered under my mom's insurance plan to the point that I can
still say that I can remain happy and healthy and
seizure-free at this point.
Ms. Barnes: I want to thank Tina for sharing her story,
and I know, I think all of us in this room can empathize.
I know I like my doctors, I consider them part of my team,
so -- the same way I do, that I should have that.
I think everyone should have that,
so we're so happy about it.
One thing I want you just to elaborate on a little bit,
you said you found out that you would be able to stay
on your mother's insurance.
Can you tell us a little bit more about how you
found that out?
And you told us about your reaction,
but also your mom's reaction to that.
Ms. Westra: Yeah. My mom is very protective, as I'm sure if any of you are
parents, you know that -- I'm sure you're very protective
of your children.
And so my mom was extremely concerned about what would
happen with my -- with my health needs.
Throughout -- throughout my having epilepsy,
she's been -- she's just been there throughout
this whole thing.
So her reaction was just she was thrilled,
because she knows that her coverage is so much more
comprehensive than anything that I would be able to get
right off the bat.
The plan that I would have gotten would have been --
it wasn't a -- it wasn't like it was a bad plan,
but it was a minimal coverage plan,
and to get anything higher would have -- like I said,
I would have been paying for my insurance and my medication,
and I would have had to probably ask my mom for assistance to pay
for all of my medication still.
So my mom was just thrilled, and I think for me,
I found out because her employer sent out a newsletter and they
said -- it said all dependents who are currently enrolled can
remain enrolled until age 26, and then she forwarded that on
to me and called me and she said, Tina, I'm so excited,
this means you don't have to pay for this and you don't have to
for, you know, I mean, you don't have to pay that huge amount and
it's not -- it's just not this burden.
And it really was, it was a burden to have
to think about that.
So I -- I can't stress that enough that it just gives me
a sense of relief to know that.
That's a piece that at least at this point I don't have
to worry about.
And so that was how we found out,
we kind of found out through this newsletter, and yeah.
Ms. Barnes: That's wonderful.
And also I want to thank Secretary Sebelius who did
so much reaching out to the community and saying, please,
let's move forward with this, let's move aggressively to try
to cover young people who are able to be on their parents'
insurance and make sure that happened as quickly
as it possibly could.
So thank you, Tina.
And I want to turn it over now to Kareem Dale.
Mr. Dale: As I was sitting there,
I was just thinking the one thing that just kept going
through my mind is that this is why we do what we do.
This is why you all fought for the passage of the ADA 20 years
ago, for the passage of the 2008 ADA Amendments Act,
and for the passage of the Affordable Care Act,
among many other historic pieces of legislation that
provide rights for people with disabilities.
And the hardest thing I do in my job,
people often ask me what's the hardest thing you do.
The hardest thing I do is to receive calls from people every
day, not a day goes by that I don't receive a call from
someone who says, you know, they're experiencing a problem,
an issue, something is going wrong and they want to know why
can't the President's -- special assistant to the President's
disability policy advisor help or fix this particular problem.
And, you know, sometimes -- sometimes I can,
sometimes I can't, a lot of ethical rules go along with what
we can and cannot do or can and cannot say.
And I know, you know, intellectually you know the
stuff we're doing is helping people on the ground every day,
you really do understand that.
But I think we get caught up a lot of times in what we're doing
and working and putting together events and, you know,
pushing through new policies that we don't get a chance
to hear the stories, like Teresa and Tina.
And it's good for me.
And it brings me back to one of the President's campaign
slogans, it really gets me fired up to go back to work,
and it's really why we do what we do.
And, you know, it's why the President gets up every day,
to make sure that the American people are safe and that we're
providing a better life and a better opportunity for people
like Quentin and Teresa and Tina.
That's why Secretary Sebelius is here today,
it's why she's worked so hard for passage and now
implementation of the Affordable Care Act,
that's why Melody has put together a great team,
it's why Jeff and I work the hours we do and work with all of
you all to make sure that people with disabilities
are having a better life.
So I don't know about you all, but I'm excited.
Thank you all for coming today for another event celebrating
the 20th anniversary of the ADA.
We look forward to more events, continuing to work with you all.
And thank you to Teresa, to Quentin and to Tina.
Thank you very much.