[Senate Hearing 109-897]
[From the U.S. Government Publishing Office]
S. Hrg. 109-897
SPECIAL OLYMPICS
=======================================================================
HEARING
before a
SUBCOMMITTEE OF THE
COMMITTEE ON APPROPRIATIONS UNITED STATES SENATE
ONE HUNDRED NINTH CONGRESS
SECOND SESSION
__________
SPECIAL HEARING
JULY 2, 2006--WASHINGTON, DC
__________
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__________
COMMITTEE ON APPROPRIATIONS
THAD COCHRAN, Mississippi, Chairman
TED STEVENS, Alaska ROBERT C. BYRD, West Virginia
ARLEN SPECTER, Pennsylvania DANIEL K. INOUYE, Hawaii
PETE V. DOMENICI, New Mexico PATRICK J. LEAHY, Vermont
CHRISTOPHER S. BOND, Missouri TOM HARKIN, Iowa
MITCH McCONNELL, Kentucky BARBARA A. MIKULSKI, Maryland
CONRAD BURNS, Montana HARRY REID, Nevada
RICHARD C. SHELBY, Alabama HERB KOHL, Wisconsin
JUDD GREGG, New Hampshire PATTY MURRAY, Washington
ROBERT F. BENNETT, Utah BYRON L. DORGAN, North Dakota
LARRY CRAIG, Idaho DIANNE FEINSTEIN, California
KAY BAILEY HUTCHISON, Texas RICHARD J. DURBIN, Illinois
MIKE DeWINE, Ohio TIM JOHNSON, South Dakota
SAM BROWNBACK, Kansas MARY L. LANDRIEU, Louisiana
WAYNE ALLARD, Colorado
J. Keith Kennedy, Staff Director
Terrence E. Sauvain, Minority Staff Director
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Subcommittee on Departments of Labor, Health and Human Services, and
Education, and Related Agencies
ARLEN SPECTER, Pennsylvania, Chairman
THAD COCHRAN, Mississippi TOM HARKIN, Iowa
JUDD GREGG, New Hampshire DANIEL K. INOUYE, Hawaii
LARRY CRAIG, Idaho HARRY REID, Nevada
KAY BAILEY HUTCHISON, Texas HERB KOHL, Wisconsin
TED STEVENS, Alaska PATTY MURRAY, Washington
MIKE DeWINE, Ohio MARY L. LANDRIEU, Louisiana
RICHARD C. SHELBY, Alabama RICHARD J. DURBIN, Illinois
ROBERT C. BYRD, West Virginia (Ex
officio)
Professional Staff
Bettilou Taylor
Jim Sourwine
Mark Laisch
Sudip Shrikant Parikh
Candice Ngo
Lisa Bernhardt
Ellen Murray (Minority)
Erik Fatemi (Minority)
Adrienne Hallett (Minority)
Administrative Support
Jeff Kratz
C O N T E N T S
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Page
Opening statement of Senator Tom Harkin.......................... 1
Statement of Timothy Shriver, Ph.D., chairman, Special Olympics
International.................................................. 3
Prepared statement........................................... 6
Statement of Dr. Julie Louise Gerberding, Director, Centers for
Disease Control and Prevention, Department of Health and Human
Services....................................................... 9
Prepared statement........................................... 11
Statement of Dr. Antonia C. Novello, New York State Commisioner
of Public Health............................................... 15
Prepared statement........................................... 19
Statement of Peter Farrelly, author, movie producer.............. 28
Prepared statement........................................... 30
Statement of Kyler Prunty, Special Olympics athlete and Iowa
resident....................................................... 32
Statement of Peggy Boyle Whitworth, board member, Arc of East
Central Iowa................................................... 36
Prepared statement........................................... 38
SPECIAL OLYMPICS
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SUNDAY, JULY 2, 2006
U.S. Senate,
Subcommittee on Labor, Health and Human
Services, Education, and Related Agencies,
Committee on Appropriations,
Ames, IA.
The subcommittee met at 1 p.m., in Benton Auditorium, Iowa
State University, Senator Tom Harkin presiding.
Present: Senator Harkin.
OPENING STATEMENT OF SENATOR TOM HARKIN
Senator Harkin. Good afternoon. The Senate Appropriations
Subcommittee on Labor, Health and Human Services, Education,
and Related Agencies will come to order. I want to welcome
everyone to this hearing, an official hearing of the Senate
Appropriations Subcommittee. As I mentioned, that covers Labor,
Health and Human Services, Education, and Related Agencies.
The chair of this subcommittee is Senator Arlen Specter of
Pennsylvania. I am the ranking member. The two of us have
served together as either chair or ranking member of this
subcommittee going back now--I'm trying to think--18 years.
I might just add parenthetically that Senator Inouye, who
is a Senator from Hawaii, once described our committee
structure thusly. He said the Defense Appropriations Committee
is the committee that defends America. He said this
Subcommittee on Health and Human Services, Education, and
Related Agencies is the committee that defines America because
of what we do in terms of everything from early childhood to
late in life.
It's an exciting afternoon to be here in Ames, as we all
look ahead to the opening of the first-ever Special Olympics
USA National Games. These games represent in microcosm a kind
of ideal world for people with intellectual disabilities. The
accent will not be on the participants' disabilities but on
their abilities. The athletes will have abundant opportunities
to compete and achieve on a level playing field. Their success
will be determined by their own hard work and talent and
determination.
Unfortunately, the world outside of Special Olympics is not
nearly so hospitable to the 7 to 8 million Americans with
intellectual disabilities. Too often they continue to stand
alone as a silent and neglected minority. It's true that we've
made significant progress thanks largely to the Americans with
Disabilities Act, which was signed into law in 1990, 16 years
ago. More and more adults with intellectual disabilities are
receiving appropriate educational services and opportunities,
living independently and working.
But we have a long way to go. It is an appalling reality
that some 90 percent of adults with intellectual disabilities
are not employed. They want jobs, but often employers are
reluctant to hire them. They want to be equal members of the
community, but society is not always ready to accommodate them.
This situation certainly will not be helped by the decision
announced this week by the U.S. Supreme Court. The Court held
that parents who prevailed in special education cases brought
under the Individuals with Disabilities Education Act, IDEA,
cannot get reimbursed for expert testimony and expert fees. The
Court made this ruling despite clear congressional intent to
the contrary. So I would just say perhaps Congress needs to
spell it out even more clearly.
In March 2001, in conjunction with the 2001 Special
Olympics Winter Games in Anchorage, Alaska, my colleague,
Senator Ted Stevens, chaired a similar hearing like this on
promoting the health of individuals with intellectual
disabilities. That was the first hearing of its kind devoted
exclusively to the needs of people with intellectual
disabilities.
So today's hearing aims to bring us up to date on changes
that have taken place since that hearing 5 years ago. While
Senator Stevens' hearing focused only on health issues, today's
testimony will also focus on education and employment issues.
I'm especially concerned that a growing number of Americans
with intellectual disabilities do not have access to the most
basic health care.
You'll hear testimony from former Surgeon General Novello
on the higher prevalence of many illnesses affecting people
with disabilities. She has three challenges that she will line
up for us. Our director of the Centers for Disease Control and
Prevention, Dr. Gerberding, will testify about the chronic
illnesses and the research that's been done into the neglect of
this population and the need for health promotion and
prevention among people with intellectual disabilities.
When the Senate returns after the July 4 break, based upon
this hearing and other information that we have obtained, I
plan to introduce, with others, legislation focusing on the
health of people with disabilities with a special emphasis on
wellness and disease prevention.
As we will see vividly displayed at the Special Olympics
this week, people with intellectual disabilities are in most
ways just like the rest of us. They too aspire to the American
dream of independence, self-determination, full participation
as productive members of our society. We have a powerful
interest in helping them to succeed because America is better
and fairer and richer when we make full use of the abilities of
all of our citizens.
So we are fortunate to have an exceptional panel of
witnesses this afternoon. We'll have two panels, the first
panel and the second panel. Timothy Shriver has been chairman
of the Special Olympics for the last 9 years. In that capacity
he serves nearly 2 million Special Olympics athletes and their
families in more than 150 countries.
Dr. Gerberding, Julie Gerberding, is director of the
Centers for Disease Control and Prevention and a tremendous
leader in the field of wellness and disease prevention. Dr.
Antonia Novello, the former United States Surgeon General and
now Commissioner of the New York State Health Department. That
will be our first panel. I will introduce our second panel when
they come up.
Although she is not testifying today in an official sense,
she has testified by being the first person who invited some
kids with special intellectual disabilities into her yard many,
many years ago to participate in some athletics, and out of
that little beginning grew the whole concept of Special
Olympics. So she has testified in so many ways by devoting her
life to helping people with intellectual disabilities, and she
is the start of all of our Special Olympics. I'm proud to
introduce Eunice Kennedy Shriver.
To show you how good she is, if only I could have gotten my
kids to do certain things, but she got one of her kids to do
something very great and to take over for her leadership and to
become the CEO of our Special Olympics. It is an honor to have
you here.
I just want to say to all of our witnesses, your statements
will be made a part of the record in their entirety, and you
can testify any way you wish. I would be pleased if you just
sort of give us your best thoughts and take 5 minutes, 7
minutes, whatever it might take.
So we're privileged and proud to have you, Tim Shriver.
Welcome back. We were here together 3 years ago when we stood
here in this building and announced the first National Games to
be held here. Thank you, thank you, and thank you for all
you've done. Tim Shriver.
STATEMENT OF TIMOTHY SHRIVER, Ph.D., CHAIRMAN, SPECIAL
OLYMPICS INTERNATIONAL
Mr. Shriver. Thank you, Senator Harkin, distinguished
guests, Dr. Gerberding, Dr. Novello, and the next panel, which
includes Kyler Prunty and Laurie Noll and Peggy Whitworth and
Peter Farrelly. I want to join together with everyone in this
room for thanking all of you, especially you, Senator. As we
all know, certainly the people Iowa know and the people of the
country as well, there is no greater champion of disability
rights than you.
I've had a chance to share that message with your staff on
many occasions as we've worked together. The country owes you
and the world really. We've had the great honor in Special
Olympics of seeing the rights and capabilities of people with
intellectual disabilities begin to be understood around the
world, and always they come back to the United States, for
example, to the ADA, to your work and leadership.
There really is no finer representative of what we want to
accomplish in public policy anywhere in the world than you are.
It's no wonder that we are here in Iowa. The wonderful people
of this State, this University, welcoming this movement as they
have, have been extraordinary. We could not have asked for
more. So we're very grateful.
I also want to join in thanking my mother for getting me a
job. Thank you. There are other members of the Board of
Directors here as well. Loretta Claiborne is here. Bruce
Pasternack, our new president and CEO, is doing a terrific job.
David Braddock is here, and other distinguished members of our
movement from around the world. So I want to thank all of them.
I want to just say briefly a few comments, Senator, if I
could. We last ran into each other in an airport. I was on my
way to San Salvador for the first ever Special Olympics Latin
American Games which were held there in the capitol under the
stewardship of President Saca there. We had athletes from all
over the continents of South America and Central America. We
had about 1,000 athletes in an extraordinary display of skill.
But when we met in that airport, I could have been going
almost anywhere. This year alone we will have European Games in
Rome, Middle East/North Africa Games in Dubai, Asia Pacific
Games in Mumbai, Chinese National Games in Harbin, and, of
course, these games here in Ames. Those are on top of some
25,000 national, provincial, county, local games that take
place every day.
It has really become a reality that my mother wished for
many, many years ago that Special Olympics would not be an
event but a movement, not just something that happens once a
year but something that happens every day, not just an
invitation to pity or sympathy but an invitation to dignity and
respect. We have learned a great deal from our growth as a
movement, 2.2 million athletes. The most important thing we
have learned is that this is not a movement about them. This is
a movement about all of us.
I think as we come together for these games the message
which I think is most important and which the people of Iowa
have certainly come to understand is that there are no
spectators in Special Olympics. Typically the lines of the
field define the players. In this movement the lines do not
demarcate player from nonplayer. Each of us is challenged to
change. Each of us is challenged to get better when we come.
Each of us is challenged to rethink expectations.
That is the demand of our athletes. They do not win on the
playing field simply for the joy of sport, although that is the
primary motive. But they win in a larger sense with the demand,
the demand that we recognize the barriers and limitations that
continue to thwart their full inclusion into society and that
we change.
When we looked at what people with intellectual
disabilities say is the greatest barrier to their happiness in
life, they don't cite disability; they don't cite genetics;
they don't cite cognitive delay; they don't cite function; they
don't cite seizures. Over 80 percent cite attitudes, attitudes
of discrimination, attitudes of misunderstanding, attitudes of
fear. The biggest obstacle they face is what I think of as
attitudes of mass destruction. For this population it is no
minor issue.
Recently international organizations have released reports
on conditions in institutions in places like Turkey and Romania
documenting malnutrition, starvation, surgery without
anesthesia, neglect as a routine course of life. In the city of
Washington, DC., we have chronicled for over 7 years horrific
conditions in the group homes under the leadership of the city.
After 7 years the mayor announced just a few months ago that,
sadly, progress had not been made, that despite over 50 deaths
being accounted for there due to neglect or abuse largely on
the part of the caretakers of the people in those group homes.
We are tired of hearing the stories that doctors say that
they don't want a person with intellectual disabilities in
their waiting room. We're tired of hearing children say they
have no friends in middle school. We're tired of hearing the
parents say there is no one to come to their child's birthday
party. This is a population that despite the advances in law
remains overlooked and underserved.
Attitudes play a major role in the issues that will be
discussed today, health, education, employment, recreation, and
it goes beyond those fields, but there are experts here much,
much more gifted than I in discussing them. I'll look forward
to hearing their testimony.
But we in our own way in Special Olympics have tried to be
responsive. People sometimes ask, ``Why? Aren't you a
recreation, a sports organization?'' Of course we are, but we
think in this day and age that change has a new tune. It cannot
be led simply by governmental, business, or community-based
organizations, but there is a vast interlocking network that
affects our population. It includes policy involved. It
includes caregivers. It includes organizations. It includes
public awareness. It includes the ways in which people with
intellectual disabilities themselves build confidence.
There is no change we have found for our population just
with policy. There is no change just with the joy of sport. It
is the linkage between the confidence created in a movement
like Special Olympics, the thought from people like Dr.
Gerberding and Dr. Novello that goes into changing the way care
is administered, the policy leadership that you have
exemplified. We have to work together. So we have tried in our
own way to do that.
Together with the CDC we launched Healthy Athletes a few
years ago. 350,000 screenings have been performed for people
with intellectual disabilities around the world, over 40,000
health care practitioners trained and exposed to the joys of
giving care to a population they may have feared and at a
minimum that they did not understand.
Together with educators around the world, we have created a
curriculum that challenges young people themselves to become
ambassadors of acceptance. We can no longer accept inclusion,
mainstreaming, and equality to be simply the responsibility of
the person with the disability. Young people need to be
challenged to do this. We've created a curriculum together with
many education organizations. It's in over 15 languages. It's
reached a million children around the world, many of them in
China. The challenge is to say to a young person, ``You can
become the messenger of acceptance in your school.'' That kind
of partnership we believe has enormous potential.
We've done the same with our family leaders who are
challenging governments in places as distinct as China and
Ireland to pass new legislation. We've done it in attitude to
help with public awareness. Who would have thought a few years
ago that we would join with the Farrelly Brothers, with Peter
and his brother, to create a film, a comedy marshaling the
enormous creative energy of Hollywood, the genius of Peter, the
acting presence of Eddie Barbanell to challenge people with joy
and laughter to think differently?
We need new kinds of partnerships. Special Olympics is a
platform for that. We are committed to continuing to try and
play that role. We will continue, Senator, to try to build the
platforms, to ask the questions, to celebrate what I like to
think of as the plus side. But we have enormous needs. Now, we
cannot do it alone. Thanks to your help, we have been able to
expand our health work.
But it strikes me we got an authorization 2 years ago, and
the one thing that drives me crazy sometimes in this movement
is when people say it's nice. Not that I don't want to be nice
and not that our athletes don't project an image of niceness
sometimes and not that our volunteers aren't nice people. But
we want more than nice. So we got a wonderful authorization $15
million. Very nice, very nice. But it's not important if
there's no money to support it.
So we will do whatever we can. We will marshal the energy
of 2 million athletes, a million volunteers, people of goodwill
all over the world. Most people want to join this work, but we
don't want just nice. We want the important attention of the
U.S. Senate and the U.S. House of Representatives and the
President of the United States to fulfill the dream that my
mother has challenged us to do and so many parents and so many
people have challenged us to do, to shift out of disability
into ability, to shift out of pity into dignity to fulfill what
we're going to celebrate here in a few days on the 4th of July,
which is a dream of equality, not based on the idea that
everyone is the same but based on the idea that despite
difference communities of inclusion and welcome are the best
communities our country could hope to create.
PREPARED STATEMENT
So I thank you again, Senator, for your extraordinary
leadership, for your help in making these games possible, and
for your convening of this hearing. We promise all that we can
do to fulfill the dream of equality for every athlete with
intellectual disability and every person around the world.
Thank you.
[The statement follows:]
Prepared Statement of Timothy Shriver
Senator Harkin, my fellow panelists Dr. Gerberding and Dr. Novello,
upcoming witnesses Kyler Prunty, Laurie Noll, Peggy Whitworth and Peter
Farrelly, the many Special Olympics athletes and family members who are
here today--thank you for the opportunity to discuss the status and
well-being of people with intellectual disabilities.
Senator Harkin, let me take this opportunity to thank you on behalf
of the worldwide Special Olympics movement for convening this important
Hearing, and for your unparalleled leadership in the United States
Senate on behalf of ALL people with disabilities, including those with
intellectual disabilities. You are a true champion--for Iowa, for
America and indeed for people with disabilities around the world. Your
lifelong, effective advocacy to break down barriers inspires us all.
Today's Field Hearing is, to my knowledge, just the second Senate
Hearing in history to focus exclusively on the well-being of people
with intellectual disabilities--a population that we know all too well
has been--and continues to be--overlooked, marginalized and
discriminated against. Five years ago, a similar Senate Hearing was
convened by Senator Ted Stevens, another great friend of the Special
Olympics movement. At that Hearing in Anchorage, Alaska, we heard about
the barriers to full inclusion for people with intellectual
disabilities--barriers to quality health care, appropriate and
inclusive education, and employment.
Five years after the 2001 Hearing, I can gladly report that the
Special Olympics movement has grown in size and quality around the
world. Founded in 1968 by my mother, Eunice Kennedy Shriver, Special
Olympics provides people with intellectual disabilities continuing
opportunities to realize their potential, develop physical fitness,
demonstrate courage and experience joy and friendship. Special Olympics
unleashes the power of sport to promote health, acceptance,
volunteerism, and empowerment.
Since the 2001 Hearing in Anchorage, we have more than doubled the
number of athletes in our movement. Today, more than 2.25 million
people with intellectual disabilities from more than 150 countries are
Special Olympics athletes. Our growth has helped bring millions of
people with intellectual disabilities out of the shadows and into
society--proudly and courageously. As we come together today, Special
Olympics is the world's largest and most inspiring movement promoting
the simple ideals of human dignity and acceptance.
While we at Special Olympics are proud of our global growth, we
fully understand that much work remains to be done. More than 6 million
Americans and over 170 million people worldwide with intellectual
disabilities, including the athletes of Special Olympics, still face
barriers to full inclusion and they still face outright discrimination.
The fight for justice goes on, and that is why today's hearing is so
important.
The title of today's hearing--A Better Future for People with
Intellectual Disabilities--is both sobering and aspirational. It is
sobering because the relatively weak research data we have on people
with intellectual disabilities paints a picture that remains, on the
whole, bleak. Far too many people with intellectual disabilities lack
access to basic health care, education and employment opportunities.
Too many people with intellectual disabilities remain
institutionalized, marginalized and in some cases essentially sealed
off from society. A stubborn but mostly silent crisis of neglect and
discrimination persists around the United States and around the world.
And the evidence is unmistakable.
Allow me to cite just a few examples.
The President's Committee for People with Intellectual
Disabilities, in its 2004 Report to President Bush, A Charge to Keep,
cited Special Olympics' 2003 Multinational Study of Attitudes toward
Individuals with Intellectual Disabilities when making the important
point that ``attitudes of the American public have not changed
appreciably in the past 50 years.'' The Report to the President goes on
to note that ``The general public underestimates the capabilities of
people with intellectual disabilities,'' perceiving them as less
competent than they in fact are to handle activities of daily living.
Particularly alarming to me as an educator is that our study showed
that more than two-thirds of the public believe that children with
intellectual disabilities should be educated either in special schools
or special classrooms within regular schools. More than half of the
public expect that if children with disabilities were included in
regular classes, they would disrupt the classroom and make it harder
for other students to learn.
We find this ignorance particularly strong in the medical field. In
a survey commissioned by Special Olympics in 2004 of over 2,500 U.S.
medical and dental schools deans, residency directors, and students, 81
percent of medical students indicated they are not getting any clinical
experience in school in treating people with intellectual disabilities.
More disturbing was that half of medical and dental school deans
surveyed said that their graduates were ``not competent'' to treat
patients with intellectual disabilities.
When we learned of these stark statistics, we decided to create an
online system to match willing and able health care providers with
patients who have intellectual disabilities. Special Olympics reached
out to more than 30 health care associations, including the American
Medical Association and the various medical specialty associations, to
urge them to enroll their members in this initiative. Unfortunately,
without a financially compelling reason to serve this population, fewer
than 800 providers have enrolled in this free service--that is less
than one half of one percent of the health care providers in America.
One might wonder if these attitudes make any difference in policy
or practice and the answer is sadly ``yes.'' In our nation's capital,
Washington, D.C., the treatment of people with intellectual
disabilities has been horrific. Despite newspaper reports exposing a
litany of abuse and neglect in the District's group homes, little has
been done. One report suggested that over 53 people died from
preventable causes in the care of the government, some from causes such
as being given the wrong medication and others from being locked in
parked cars. For some reason, officials have been unable to improve
these conditions for over 5 years. It is a scandal but believe it or
not, it is a common one in places around the world.
If we were to ask the 3,000 plus athletes gathered now in Iowa, we
would hear literally thousands of stories describing the personal
experiences of suffering: people turned away from doctors' offices;
people subjected to humiliation in schools; people exposed to vicious
taunts, name-calling, and bullying. Senator, like so many others and
like you, I am tired of these chronicles of despair and tired of the
indifference to which they point. Our athletes and their families have
done nothing to deserve 3rd class status in this country. They are
being punished without guilt--victims of attitudes of mass destruction.
With them, I appeal to you and your colleagues Senator: End the
injustice! Please end the injustice now!
The theme of this hearing--which emphasizes progress towards a
Better Future--is ultimately hopeful. The good news is that policy
leaders, including you, are rising to the challenge to address the
needs of this population. Last year, Surgeon General Anthony Carmona,
who joined us at our Research Symposium yesterday, issued a Call to
Action to Improve the Health and Wellness of Persons with Disabilities.
The goals of this laudable Call to Action are ones which we at Special
Olympics readily endorse, and in fact are working to achieve. They are
as follows.
Goal 1: Educating the American public that people with disabilities
can lead long, healthy, productive lives--our athletes illustrate this
so well.
Goal 2: Giving health care providers the knowledge and tools to
screen, diagnose and treat the whole person with a disability, with
dignity--Our Healthy Athletes program helps to make this happen--but as
good as it is, it reaches just a fraction of people with intellectual
disabilities and the health practitioners who treat them. We need to
advance this goal on a much broader scale by changing Medical and
Nursing School curricula to improve training for all health care
practitioners so that they are better able to treat people with
intellectual disabilities.
Goal 3: Persons with disabilities can promote their own good health
by developing and maintaining healthy lifestyles. Special Olympics,
through our core mission of sports training and competitions, does just
that.
Goal 4: Accessible health care and support services to promote
independence for persons with disabilities. We of course strongly
support this goal and I look forward to hearing from my distinguished
colleagues on this panel about how we as a society can achieve it.
I know our time is limited today, so I'd like to briefly conclude
with some Special Olympics ``Calls to Action:"
1. First, I urge you and your colleagues on the Senate
Appropriations Committee to continue to support Special Olympics. The
federal funding which you, Senator, have been so instrumental in
securing for our Healthy Athletes program allows us to reach more
athletes and more health practitioners in Iowa and beyond. In fact,
since the last Field Hearing on intellectual disability, we have
provided over 350,000 health screenings free-of-charge to our athletes
in the United States and abroad, utilizing the volunteer services of
over 30,000 health care practitioners. Federal dollars that support
Healthy Athletes are fully leveraged-in short, these public funds are
well spent.
2. I urge you and the Appropriations Committee to support Special
Olympics' Education authorization, including support for our new
``Young Athletes'' program that is showing great promise. This
imitative reaches children in the formative years of ages 2-7, and
helps them to develop physically, cognitively and emotionally. As you
know, investments in our youngest children are especially cost
effective.
3. I urge you and the Appropriations Committee to heed the call of
the President's Committee on Intellectual Disability for a National
Campaign specifically targeted to school-age children and employers to
change negative attitudes toward people with intellectual disability.
The President's Committee goes on in its Report to cite its intention
to partner with Special Olympics in this important work. It is not
enough for the law to allow people with intellectual disability to
attend school; we must create opportunities for children to lean about
human exceptionality, to overcome their fear of difference, to practice
the skills and values of citizenship and acceptance. ``Special Olympics
SO Get Into It'' is a national effort to do just that but it needs
support. In an age of high standards for academic achievement, we must
remember that children learn best when they feel engaged, safe, valued,
and challenged. The call to meaningful acceptance must include a
challenge to non disabled young people, otherwise we condemn children
with intellectual disabilities to being strangers in their own schools-
present in body but left out in spirit.
Senator, we at Special Olympics hope to greatly expand our public
education and youth outreach efforts, but it will require resources. I
hope you and your colleagues will support these outreach efforts
through the Appropriations process. Even modest federal support will
create a ripple effect of more engaged youth of greater character who
give back to their communities through increased volunteerism.
In closing, let me thank you again Senator Harkin for holding this
Hearing and for inviting me to testify at it. When thousands of Special
Olympics athletes from all 50 States and the District of Columbia march
in to the Coliseum this evening, they will be showing Iowa and the
world that they are people with abilities--capable of competing in
sports, getting educated at school, making friends, holding jobs and
being valued members of the community. But even more, they march in a
long tradition of Americans who, generation after generation, march to
challenge the nation to fulfill its highest ideals.
In just a few days, we will celebrate the birthday of our nation
all across the land--a nation conceived in liberty and equality. But in
a larger sense, we do not celebrate an event, but rather an idea--and
not just an idea but a quest. The athletes here in Iowa, Senator, are
on a quest of their own--to challenge the nation anew to the dream of
human equality. Their challenge is unique in the history of our
country: they claim equality not based on sameness but on differences;
not based on disability but on the different abilities of every human
being; not based on some arbitrary standard of achievement but on the
universal standard of the human spirit.
In 2006, the athletes of Special Olympics are appealing to the
nation not as a cause, but as a constituency, prepared to demand of
their government a redress of grievances and protection from bias and
discrimination. As they compete for excellence in sports, they are also
competing for acceptance in this great nation. Our movement and its
athlete leaders want respect on the playing field and off it too.
Senator Harkin, the athletes of Special Olympics are not here for
pity and they are not here with a plea. They are here for dignity and
they are here with a demand: give them a chance, a real chance, an
American chance. Give them a chance worthy of the Declaration of
Independence itself. They will not disappoint you or our country. On
the contrary, as my mother said years ago, ``as we hope for the best in
them, hope will be reborn in us.'' And hope cannot come soon enough.
Thank you.
Senator Harkin. When I come back on questioning you, Tim,
you had in your written testimony a couple, three or four
things that you're urging us to do. I want you to kind of spell
those out for the record when we come back to that. I just got
a note from the director--well, she's the staff director that
runs our committee. You know really staff runs everything.
Mr. Shriver. Yes. Ellen is the boss. We know that.
Senator Harkin. Ellen Murray just handed me a note that
says, ``The House did not fund the authorization in the fiscal
year 2007 bill. We will.''
Mr. Shriver. Thank you.
Senator Harkin. If Ellen Murray says so, that's it.
Mr. Shriver. She's taught us that lesson. Believe me.
Senator Harkin. Now we turn to Dr. Julie Gerberding, the
director of the Centers for Disease Control and Prevention. I
welcome you back to Iowa. Again, just my heartfelt thanks for
everything you're doing from aid and including everything else
in making us a more healthy society. Dr. Gerberding, welcome,
and please proceed.
STATEMENT OF DR. JULIE LOUISE GERBERDING, DIRECTOR,
CENTERS FOR DISEASE CONTROL AND PREVENTION,
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Dr. Gerberding. Thank you. It's always a privilege to be in
a leadership position, but I can't really think of any more
privileged vantage point than to be here and part of the
Special Olympics and to have a chance to testify on this really
important subject. So thank you for your leadership and hosting
us.
You and Senator Specter are responsible for the committee
that defines America, we at the CDC thank you for your support
of the agency that's responsible for protecting America's
health. Many of you may not know that Senator Harkin is the
person who put the ``Prevention'' in the title of CDC. We are
the Centers for Disease Control and Prevention because of your
championing for our agency.
You know, we're here celebrating the Special Olympics, and
I can't wait for the games to begin. I've already met so many
wonderful athletes, and my heart is just open to the excitement
and the energy. We are seeing athletes capable of extreme
athleticism. We have extreme ability. They have extreme
passion. They have extreme courage, and they have extreme
commitment to doing their very best.
I'm sorry to say we're also learning about extreme health
disparities in this context. This morning we visited the
Healthy Athletes Program, and I had the chance to review some
of the statistics about the health status of our Special
Olympics athletes that were obtained from previous encounters.
It's embarrassing. It's tragic.
Among athletes, 30 percent fail hearing tests, 45 percent
have periodontal disease and need better dentistry, 20 percent
have vision test failures, and 70 percent of those with glasses
need a different prescription because their prescription is out
of date. Our athletes suffer disproportionately from
osteoporosis. They suffer from obesity, from lack of physical
fitness, from poor nutrition, and many, many other health
conditions that are going unrecognized or untreated for a
variety of reasons. But we need to get to the bottom of them.
Among those reasons are lack of access to health care and
attitude that you've already discussed. When access does occur,
the quality of the access is all too often lacking. I have been
trying to do my homework and understand how could this be? How
could this wonderful population of people who we've made such
progress in terms of improving survival still suffer
disproportionately from such poor quality of health?
People with disabilities in our country have a 40 percent
increase in chronic diseases like diabetes, cardiovascular
disease, and all of the other complications that people without
intellectual disabilities or development disabilities have and
these are continuing to challenge our health system. For these
people the problem is even greater. They often are neglected,
rejected, or left out of the opportunities that so many of us
have access to.
I think we recognize that access and quality are part of
the problem. There are many places to start to address it. But
I just wanted you to be aware of two facts that I found
astonishing. One fact is that 80 percent of medical students in
this country do not have any clinical experience in taking care
of people with disabilities. Fifty percent of the dental
students in our country have never taken care of a patient with
an intellectual disability.
We are not training our clinicians to even know how to go
about doing this let alone providing the sorts of health care
insurance and access that we would need to encourage them to
provide services even if they knew how to do it. So our work is
cut out for us.
I think we do have some opportunities to make extraordinary
improvements very fast. It does take a network. You've
described the whole coalition of people who need to engage. But
I think there are three things that we need to specifically
concentrate on. One is to make this problem visible. This
hearing is a part of that. Everyone here in the room can be a
part of making this very tragic, extreme health disparity as
conspicuous as possible.
We also do need to work on our health system. We can have a
conversation about specifically what can be done right now
today to change the way our clinicians are educated and their
ability to provide care. They want to do it, but they don't
have the training and the experience to be able to do it right
or to be able to do it with confidence. So we do need to deal
with it.
I'd like to congratulate the Family Practice Association,
because they have stepped up to the plate and are making
information available to their constituents, publishing
providers in the community who will provide the kind of follow-
up services that many of our athletes need and going out of
their way to provide leadership for other physicians.
The last thing I would like to say needs to be done is to
empower individual people, particularly the athletes and their
families themselves. This morning I saw a wonderful tool. I am
so excited about it I can hardly stay off my BlackBerry. I saw
in the context of the health screenings, that are going on in
this very building as we're sitting here, an electronic health
record, a personalized health record for our athletes.
That health record as we are sitting here is inputting
specific information about the health status of the athletes
into a format that's standardized around the world. That's why
we have the kind of information we have. In fact, I have here a
report from last week's Olympics that is already assembled, and
I know the health status of the people who were participating
in Special Olympics last week because it's already been
compiled and published.
But that's not enough. We saw an example of how an
individual athlete in the future would be able to have their
health information on a Smart Card or on the Internet so that
wherever they go when they leave this room, they will be able
to access that information or their physician will be able to
access it or the people who are responsible for their
comprehensive care.
PREPARED STATEMENT
That is technically possible to do today. But I think we
have some exciting opportunities to look at how we can scale
that project, perhaps speed that project up, and let the
Special Olympic athletes be the leaders of our transition to
electronic health records in our country. Thank you very much
for your interest and your support of this, Senator.
[The statement follows:]
Prepared Statement of Julie Louise Gerberding
Thank you for the opportunity to appear on behalf of the Centers
for Disease Control and Prevention (CDC) to discuss the promotion of
health and wellness for people with intellectual disabilities. Thank
you also for your support of CDC's health protection goals. CDC's work
on intellectual disabilities is consistent with our commitment to
improve people's health through all stages of life and in all places.
Today, our nation is focused on urgent health threats such as pandemic
influenza, yet we must also continue to pay attention to urgent
realities such as injury, obesity, and cardiovascular disease. In
particular, we must ensure that our efforts in reducing the impact of
urgent realities reach the most vulnerable members of our communities,
including those living with intellectual disabilities.
Over the past several years, we have seen many improvements in the
health and well-being of people who have intellectual disabilities.
Thanks to advances in clinical medicine, more people with such
disabilities are living into older adulthood. People with intellectual
disabilities have more choices about how they are educated, where they
live, and how they conduct their lives. Today, fewer people with
intellectual disabilities are entering institutions, and the majority
of those who do enter institutions eventually leave to live with their
families or reside elsewhere in the community.
We are learning, however, that as more people with intellectual
disabilities live longer, they like everyone else experience the
natural challenges to health and wellness that accompany the aging
process. Individuals with intellectual disabilities and their families
have reported that they feel excluded from efforts to promote healthy
living, and evidence suggests that we must do more to ensure that our
efforts are inclusive of this community. When compared with other
populations, individuals with intellectual disabilities experience
poorer health across their life span and experience greater difficulty
in finding, accessing, and affording appropriate healthcare. Moreover,
the specific disorders associated with intellectual disabilities are
found in higher rates among low-income communities that often have more
limited access to health services.
In order to meet the health challenges facing the intellectual
disability population, individuals, family members, and healthcare
workers need better access to evidence-based, culturally relevant, and
understandable information. Like every other American, people with
intellectual disabilities need high quality, readily available,
community-based health services to support healthy living. As a part of
CDC's goal of having healthy people who start strong, grow safe, and
live healthy and productive lives, CDC is committed to further
advancing the health and wellness of this population. However, the
support of a wide range of institutions and agencies is needed to
effectively improve the well-being of people with intellectual
disabilities.
HEALTH OF THE POPULATION
People with disabilities represent about 17 percent of the overall
population, but account for as much as 47 percent of all medical
spending. An estimated two to four million people in the United States
experience some form of intellectual or developmental disability.
Direct lifetime costs associated with mental retardation are estimated
to exceed $12 billion. In comparison, direct costs associated with
asthma, a chronic illness with a prevalence approximately six times
that of mental retardation, have been estimated at $9 billions.
Although the life expectancy of individuals with moderate to severe
mental retardation is nearly 20 years longer that it was in 1970, it is
still, on average, 10 to 20 years shorter than that of the general
population. Additionally, many individuals with intellectual
disabilities also have other health problems, particularly when the
disability is associated with an underlying condition or disease. For
example, people with Down syndrome commonly have heart problems that
can result in premature death or impaired health if not corrected. When
such identifiable health problems are not present, however, the causes
of shortened life span are not entirely understood.
Chronic health problems may be an important contributing factor in
the reduced life expectancy of people with intellectual disabilities.
In the general population, longer life expectancy brings increased risk
for a number of chronic conditions, and this also holds true for people
with intellectual disabilities. For example, the prevalence of obesity
for people with intellectual disabilities is much higher than the
already troubling rate of 30.5 percent found in the general population.
Obesity is associated with increased morbidity and mortality from
hypertension, diabetes, heart disease, arthritis, stroke, sleep apnea,
and some cancers. Anecdotal evidence suggests that the prevalence of
obesity may vary significantly in sub-groups of people with
intellectual disabilities. In one sample of adults with intellectual
disabilities, 70.7 percent of those with Down syndrome were obese,
compared to 60.6 percent of individuals without Down syndrome.
HEALTH PROMOTION
People with intellectual disabilities represent a significant group
that would benefit from health promotion programs. Whereas health
education and health promotion have resulted in reduced medical care
need for the general population, little research has explored such
benefits for people with intellectual disabilities. Clearly, there is a
need for research-based interventions that enhance health and wellness
for this group. With public health research being one of the six key
strategies of CDC to reach its health protection goals, CDC is
committed to advancing the science and mobilizing programs to improve
the wellness of this population, but CDC cannot do this alone. We rely
extensively on our partners, including Special Olympics, AAMR, The Arc,
The Association for University Centers on Disabilities, state and local
public health agencies, community organizations, academic institutions,
and other federal agencies such as the Office of the Surgeon General
and the National Institutes of Health. These partnerships are crucial
to achieving improvements in the health and quality of life of people
with intellectual disabilities.
CDC-Sponsored Research
CDC supports researchers at the University of Montana's Rural
Institute on Disability, who have worked to better understand the
health of people with intellectual disabilities and develop accessible
and sustainable community-based intervention models. They have found
that the typical diet of a group of people with intellectual
disabilities contained excessive amounts of nutrient-poor, higher fat
items, with the daily per person calcium intake in this group being
less than 600 milligrams, considerably below the Recommended Dietary
Allowances of 1,000 milligrams per day for adults and 1,200-1,300 per
day for adolescents and the elderly. In response to these and similar
findings, the team in Montana has developed and is currently testing
The Wellness Club, a model for organizing community-based services and
support to establish and maintain healthy lifestyles in adults with
intellectual disabilities. The Club engages individuals in a process of
managing their own health, and is offered in their own residences with
the support of service staff and case managers. Participants who enroll
in The Wellness Club program agree to work on at least one health
objective and to participate in the structured activities of the
program. Activities include setting personal goals, self-monitoring,
receiving feedback, and participating in social support meetings.
Wellness goals are prioritized, and plans are developed to assist with
progress toward goals. Typical target areas include physical activity,
healthy eating, oral hygiene, and personal care behaviors.
In another example, CDC-supported investigators at the University
of South Carolina School of Medicine have developed an evidence-based,
community-oriented model to curb obesity and unhealthy weight among
those with intellectual disabilities. They have developed an
intervention called Steps to Your Health, which provides eight 90-
minute classes conducted by community-based disability service
providers. Steps to Your Health also includes two home visits to
establish an individual exercise regime, develop a dietary plan, and
make grocery store visits to identify healthy food choices. In the
pilot study, participants showed significant improvements in healthy
dietary habits and increases in physical activity, as well as decreases
in unhealthy weight and obesity. Study results were published in
January 2006 in the American Journal on Mental Retardation.
Both of these examples show that it is possible to overcome the
barriers associated with reaching a diverse population of people with
particular health needs who are dispersed among communities. Additional
implementation of these and other successful programs holds great
promise for addressing the health disparities in obesity and other
chronic conditions experienced by people with intellectual
disabilities.
CDC-Sponsored Programs
CDC is proud of its work with Special Olympics. Special Olympics
exemplifies CDC's goals of growing strong and living healthy,
productive and satisfying lives. Special Olympics is rapidly expanding
overseas, sharing CDC's goal of working globally. Special Olympics also
does an exceptional job of raising awareness about the issues faced by
people with intellectual disabilities. They have shown us that people
with intellectual disabilities have hopes and dreams, and that they can
achieve remarkable things. In many cases, Special Olympics events are
the only opportunity that people with intellectual disabilities have to
challenge themselves physically, to participate in physical
conditioning or sports, and to compete and win.
Since 1996, Special Olympics has provided Healthy Athletes venues
for athletes to receive free screening tests, referrals, and healthy
lifestyle counseling during sports competitions. Through the Healthy
Athletes program, Special Olympics is working to improve the ability of
athletes to train and compete, to improve their general health and
fitness, and to support overall improvement in personal well-being.
During the 2005 Special Olympics World Games in Nagano, Japan, Healthy
Athletes gave free health screenings to 1,200 athletes. More than 4,200
screenings--including foot care, oral health, vision, and hearing--were
offered, as well as counseling on safety, nutrition, and physical
conditioning.
The physical fitness shown by the participants at Special Olympics
is a model and inspiration for all people with intellectual
disabilities, encouraging them to engage in physical activity. When
regular physical activity becomes a routine at an early age for people
with intellectual disabilities, and is promoted by the agencies and
professionals working with them, this will encourage healthy lifestyles
and lead to longer and healthier lives for the entire population of
people with intellectual disabilities. In order for habits to
meaningfully change, efforts to increase exercise and improve lifestyle
choices have to be ongoing. Such efforts should involve families and
caregivers in the communities where people with intellectual
disabilities live.
PREVENTING INTELLECTUAL DISABILITIES
Intellectual disabilities can be caused by brain abnormality,
injury, or disease--any of which can occur before, during, or after
birth. Some of the most commonly known causes of intellectual
disabilities include Down syndrome, fetal alcohol syndrome, and fragile
X syndrome; all of which occur before birth. Other prenatal causes
include structural birth defects like hydrocephalus and infections from
pathogens such as cytomegalovirus. Some causes, such as asphyxia, occur
during or soon after childbirth. Still other causes of intellectual
disabilities may not occur until later in life. These include traumatic
brain injury, stroke, and certain infections such as meningitis.
However, in the majority of cases, the exact cause of a person's
intellectual disabilities is not known.
U.S. public health efforts have been very successful in limiting
and even eradicating some of the preventable causes of intellectual
disabilities. In 2005, a major public health milestone was reached when
CDC announced the elimination of the rubella virus in the United
States. If a woman is infected by the rubella virus during pregnancy,
it can be passed to her baby and cause congenital rubella syndrome.
Congenital rubella syndrome is characterized by the presence of birth
defects, which may include blindness, deafness, heart defects, and
mental retardation. The rubella virus is still common worldwide, with
approximately 100,000 cases of congenital rubella syndrome reported
annually. This remarkable achievement is a tribute to a safe and
effective vaccine and a successful immunization program, and CDC will
continue working to ensure that rubella remains eliminated within our
country.
CDC also has activities underway to address fetal alcohol syndrome,
one of the leading known preventable causes of mental retardation and
birth defects. Fetal alcohol syndrome is 100 percent preventable if
women do not drink during their pregnancies. Implementing intervention
strategies to reduce alcohol consumption during pregnancy is,
therefore, an important component of reducing intellectual disabilities
and other conditions associated with prenatal alcohol exposure. A
challenge in preventing fetal alcohol syndrome is that alcohol
consumption can damage the fetus early in pregnancy, often before a
woman knows she is pregnant. Research has established that provider-
based screening and interventions for women of childbearing age can
reduce their risk of having an alcohol-exposed pregnancy. CDC has
developed and published targeted recommendations on provider-based
screening and interventions for women of childbearing age, and is
currently working to further translate these recommendations into
practice by developing a quick-reference tool to facilitate their use
among health care professionals.
CDC also works to prevent traumatic brain injuries, which are
sustained by at least 1.4 million people in the United States every
year and cost an estimated $60 billion annually, including the costs of
lost productivity. A traumatic brain injury is caused by a blow or jolt
to the head that disrupts the function of the brain and can ultimately
lead to a wide range of changes that affect thinking and learning,
sensation, language, and emotions. When these injuries occur during the
developmental period, they can result in developmental delay and
related disabilities. In addition, traumatic brain injury poses an
increased risk for epilepsy, as well as other brain disorders that
become more prevalent with age, including Alzheimer's and Parkinson's
disease. CDC is committed to preventing injuries in youth and currently
supports a number of state and university-based research programs to
identify successful intervention strategies. One ongoing project is
called ``Heads Up: Concussion in High School Sports,'' an initiative to
help coaches, parents, and other school officials prevent, recognize,
and manage concussion in high school sports. The ``Heads Up'' kit
contains practical, easy-to-use information, including a video and DVD,
a guide for coaches, posters and fact sheets in English and Spanish, a
CD-ROM with downloadable materials, and additional resources.
Additionally, CDC supports programs that monitor traumatic brain
injury, link people with traumatic brain injury to information about
services, and prevent traumatic brain injury-related disabilities.
CONCLUSION
As we approach the 16th Anniversary of the passage of the Americans
with Disabilities Act, we can be proud that as a nation we have made
important commitments to people with intellectual disabilities. Because
of federal laws like the Americans with Disabilities Act, court
decisions that have led to widespread community integration of people
with intellectual disabilities, and national policy initiatives such as
the President's New Freedom Initiative, people with intellectual
disabilities are not only living longer lives, today they are more
integrated into their communities. Despite these positive changes,
however, people with intellectual disabilities continue to be at
greater risk for chronic health conditions. There is still much to be
done, and CDC and its partners are committed to promoting health and
wellness for every individual, through leadership, customer-centricity,
public health research, and accountability.
Senator Harkin, thank you for the opportunity to discuss these
important public health issues. Thank you also for your interest in the
health of people with disabilities, and for your continued support of
CDC's vision of healthy people in all stages of life living in healthy
places.
Senator Harkin. Thank you, Dr. Gerberding. Now we turn to
Dr. Antonia Novello. As you know, Dr. Novello is a former
Surgeon General of the United States and is now the director of
Public Health for the State of New York.
Before I return to that, I wanted to recognize your
director for the Center for Birth Defects and Disability. Dr.
Jose Cordero is here with his team. I just want to point him
out there.
Dr. Novello, welcome to Iowa. Good to see you again.
STATEMENT OF DR. ANTONIA C. NOVELLO, NEW YORK STATE
COMMISIONER OF PUBLIC HEALTH
Dr. Novello. Thank you. The only problem I have is that
your corn is not ready. Having been here during the Governors
Association meeting and having eaten about a dozen on my own, I
can tell you there's no better corn in the world. So, Senator,
I sometimes feel like I'm following Dr. Gerberding. We have the
same statement, but I'm going to say it in Spanish.
At this stage of the game, I'm going to come here with
three hats, the former Surgeon General, the director of the
Department of Health of the State of New York, and a member of
the Board of the Special Olympics for the last 8 years. Having
been this morning already in the Healthy Athletes where I got
my ears checked, my eyes checked, my feet checked, and I even
have my milk exercise, I can tell you that we preach what we
do. Therefore there's no better place to come and try to put
out a plea for working in a place like Iowa where you take your
things seriously and you have a Senator who cares. Thank you
very much for having this hearing.
In the United States we're always talking about statistics.
288 million people. 14 percent Hispanics, 14 percent African-
American, 5 percent Asian-Pacific Islands, 1 percent Native
American, and 7 million multiracial. But no one talks about the
6 million people with intellectual disabilities. I think the
time has come to put that in the record.
In particular, people with intellectual disabilities, you
never hear about the 31 percent of them smoke. National average
is 20 percent. When you talk about the lack of physical
activity, it's 53 percent compared to 34 percent of the other
type of public. When you talk about not receiving preventative
medicine, mammography, 65 percent only when you are
incapacitated intellectually while it's 71 percent for the
average public. When you talk about dental visits, 37 percent
versus 46 percent in children and adults without disability.
When you talk about high cholesterol, 19 percent versus 17, and
high blood pressure, 37 percent versus 29 percent.
So when I took into this, a large body of research also
shows what we have done in the Special Olympics. Like Dr.
Gerberding says, 30 percent of the athletes have hearing loss.
When I look into that, that's a rate six times higher than the
normal population. When you're looking to tooth decay, 35
percent of them hurt. When you hurt, you cannot be able to
express yourself, and then you shy away more so than by being
disabled.
When you have vision, 25 percent cannot see far, and 10
percent cannot see near. When you look at bone health, 29
percent of males and 30 percent of females have below normal
bone mineral density. Only women over the age of 65 have these
numbers.
When you look at foot health, 50 percent of the athletes
either have bunions or calluses or they have fungal infection.
When you look at obesity, 30 percent of them are obese, and 20
percent of them are overweight. The problem is that they might
not be able to understand the message of nutrition.
So when I look into this, the multiple health problems that
they are are totally compounded by something that I find
totally appalling. That is the lack of health care access in
this Nation for people that by no fault of their own happen to
be at the part of the line in the back. When I look into that,
I say we need to take better health care. But when they do
finally get it, it's usually inadequate, inappropriate, or it's
sporadic, if at all. This is even more pronounced if you happen
to be a minority.
Think about the example of the race of the people with
Trisomy 21, the people with Down syndrome. The median age of
death is 50 years if you are a white person with Down syndrome.
It's 20 years if you are a person that is African-American and
12 if you are a person that is Hispanic. There has to be
something that has to do with health care delivery, and that is
unacceptable.
When I look into this, I'm reminded of the words of Martin
Luther King. He used to say, ``The ultimate measure of a man is
not where he stands at times of comfort and convenience. It is
where he stands at times of challenge and controversy.'' I
think we have a problem in this country in challenge and
controversy. The health of the people with disabilities in
spite of the benefit of (inaudible).
Could it be the lack of training? Could it be the societal
misunderstanding of people who speak different, walk different,
and act different? Could it be the lack of health promotion and
education? Could it be the lack of research? How can you do
research if you don't even understand the health difficulties
that they have? Could it be the lack of enforcement when
somebody is not doing their job?
At this moment I can't tell you where we are going. We have
disparities. Everybody knows that. But what are we going to do
about it? I think I have five challenges for you, Senator. The
first one I think is Challenge No. 1, health care providers
must receive training and acquire experience in taking care of
people with learning disabilities and intellectual.
As Dr. Gerberding said, we did a study. I was in shock. 52
percent of medical schools and 53 percent of dental schools,
they do not know how to take care of a person because they do
not feel competent enough to take care of people with
disabilities. 58 percent of deans and 50 percent of dental
school deans say, ``That's not a high priority in our school.''
Most medical school deans, 81 percent of them say, ``We do not
have the curriculum time, and we do not have the faculty
expertise.'' Then get your act together. The time has come to
take care of these people.
The good news is that the study shows that there is no
discrimination if given the equipment and the training, all
deans of schools of medicine and all deans of schools of dental
are out there in the front line trying to do what is best for
them. So let's get the teachers back into the teaching
regarding health care access for the people with disabilities.
It stands to reason that inadequate prepared health
professionals are less likely to be motivated to treat a
population that they do not know that they could be reached.
With any patient I have to tell you they have the right to be
informed of their needs. They have the right to be informed of
their options, and they have the right to be asked as
individuals, ``What is best for you?'' As I've always said,
don't ever do anything for an individual ever unless you ask
them what is needed from their perspective. As the Indian says,
``Don't tell me what to do unless you have walked a mile in my
moccasins.''
Challenge No. 2, we have to ensure that individuals born
with an intellectual disability are found early. When you find
them early, you treat them accordingly. Fifty States provide
some level of newborn screening, most of them between 12 and
most of them between 16. In New York State we do 44. I will not
do a testing on the newborn unless I have something to offer to
that mother, and 44 can do it. If you test early, you will
discover it early, and I can tell you that you will be able to
take care of the people. It has been confirmed that children
with genetic and metabolic conditions that are discovered early
will be able to incorporate themselves into society with the
right treatment.
Challenge No. 3, you have to support prevention. You have
to support diagnosis, and you have to support the treatment of
people with intellectual disabilities. Think about the program
of Early Intervention. This program has been here since 1993
and serves over 70,000 children between the age of birth and 3
years. You know that this goes with the Individuals with
Disabilities Act and provides treatment from birth to 3 years
and diagnoses anyone with physical or mental conditions that
have developmental delays.
I have to tell in you New York we test 4.3 percent of all
these children, and we have been extremely successful. So I
encourage this committee, Senator Harkin, to explore the ways
that the Federal Government can support the reputation and
expansion of Early Intervention in all the States of this great
Nation of ours because we are in all the States as well.
Regarding the Surgeon General's report of 2002 where he
says identification of a package of health care services is
specifically designed for individuals with intellectual
disabilities is great and should produce good outcomes. But I
don't want one more research protocol found on anybody's
shelves. I feel the time has come to get that package and then
put it in the hands of the State medical societies and
distribute it to people who can make it a reality. I'm tired of
fighting (inaudible).
We know that bias and discrimination have detrimental
effects on the health and the well-being of people who are
affected by intellectual disabilities. Lack of acceptance and
inclusion accompanied by ridicule and disrespect absolutely
contribute to the depression and the problems of people with
intellectual disabilities.
Therefore my Challenge No. 4 is don't educate us anymore.
We know. We are your theater. Educate every single American in
this United States to help to promote the full acceptance and
inclusion of those people that by no fault of their own makes
us feel bad, because we believe that we are in charge of our
destiny and God has a way of always showing you that you are as
fragile as anybody else.
I believe that we need an educational campaign in which we
remove the stigma. The more people know about something, the
more people will come forward and try to help you and solve it.
Therefore let's take away the perception that people that look
different has nothing to do with their brain. The disability is
in those ones that judge, not in the ones who are disabled.
More than anything I am asking for you to support a
national public information campaign to promote the
understanding and the acceptance of individuals with
disabilities. Those are 50 million of our citizens who through
no fault of their own traditionally lack the clout of being
heard and for the world to stand up and notice.
If you can, get the $15 million that Tim has said in your
appropriation and also get into what we have as what we call
the ``SO Get Into It'' program. That one is outstanding, a
curriculum-based program that is using 3,500 schools. This in
the elementary and the middle and the high school students, it
teaches them about intellectual disabilities. It is a great
program, and it is in our portfolio.
Finally, Senator, No. 5 is a challenge to support and fund
research or interventions that focuses specifically on the
health needs of the individuals with disabilities. Senator,
persons with ID need lifelong families. Group homes, although
useful, are not a family environment conducive to the dignity
that they need. Parents are going to be in need of support and
life learning.
We're also going to need research in dental coverage.
Dentistry is in need of a specialty recognition. We must have
oral health affordable, and we must make sure that in States
where it's necessary that Medicaid waiver should purchase
additional insurance benefits. Special Care Dental Act needs to
be considered and passed. These people's teeth are no different
from anybody else's teeth, and they have to be taken care of.
I urge the committee to support federally funded research
and an investigation program that focuses on identifying the
causes of and the solutions to health disparities. After all,
we cannot expect to determine the needs of the future if all
that we have today is incomplete data.
PREPARED STATEMENT
So, Senator Harkin, I have presented five challenges, and I
offered some suggestions of how can we meet them. I thank you
for allowing me to do this, and I leave you as good Iowans with
the words of the great holocaust historian who said three extra
commandments. One is thou shall not be a victim. The second one
is thou shall not be a perpetrator, and the third one is thou
shall not be a bystander. Don't let anyone say that Senator
Harkin from Iowa ever was a bystander in the life of Special
Olympics. Thank you.
[The statement follows:]
Prepared Statement of Antonia C. Novello
Good afternoon. Senator Harkin, other committee members (if
present), staff members and special guests--thank you for giving me the
opportunity to speak with you today on the important subject of
protecting and improving the health and well-being of Americans with
intellectual disabilities.
Today, I will be speaking to you wearing three hats.
My first hat is that of New York State Commissioner of Health. In
this capacity, I am responsible for protecting and improving the health
of 19 million New Yorkers, including approximately 350,000 New Yorkers
with intellectual disabilities.
My second hat is that of a former Surgeon General. As this nation's
14th Surgeon General, and the first woman and first Hispanic to hold
that position--and earlier when I served as deputy director of the
National Institute of Child Health and Human Development, where
research issues regarding intellectual disabilities were addressed--I
had a unique opportunity to observe the health needs of Americans,
including those with intellectual disabilities.
My third hat is as a member of the Board of Directors for Special
Olympics, a position I have held since 1998. In this capacity, I have
had the opportunity to learn about the many health needs of persons
with intellectual disabilities. I have attended many of the Healthy
Athletes Screenings sponsored by Special Olympics, where I have seen
first hand the tremendous health care needs that these Americans have.
Colleagues, the facts are well known:
--Over 50 million Americans have some kind of disability.
--Up to 3.1 percent of the general population have some form of
mental retardation.
--The Centers for Disease Control estimates that 17 percent of U.S.
children under 18 years of age have a developmental disability.
--And 12.8 percent have a special health care need.
--A large body of research--including the 2002 Surgeon General's
Report, as well as studies commissioned by Special Olympics and
the American Association of Persons with Intellectual and
Developmental Disabilities--have clearly demonstrated that,
compared to the general population:
Individuals with intellectual disabilities have a higher
prevalence of:
--Hearing and vision loss
--Tooth decay
--Obesity
--Foot problems
--Reduced bone density
--And other health problems
--Furthermore, research has also demonstrated that these individuals'
access to health care services are at lesser rates than the
general population.
--And when they do receive health care, it is known that individuals
with intellectual disabilities are more likely to receive
inappropriate, inadequate and sporadic treatment, if at all.
--These disparities are even more pronounced if the individual with
an intellectual disability is of African American or Hispanic
descent.
I see these statistics and I am reminded of, Dr. Martin Luther
King, who said ``the ultimate measure of a man is not where he stands
in moments of comfort and convenience, but where he stands at times of
challenge and controversy.
Today I believe that we in America face a time of challenge and
controversy as we seek to fulfill our responsibility of assuring full
access by all individuals to high-quality health care.
I think it is time to candidly admit that--here in the year 2006--
despite strong efforts on the part of many--the health of individuals
with intellectual disabilities still lags behind that of the general
population.
Through no fault of their own, Americans with intellectual
disabilities continue to face huge obstacles in obtaining even basic
health care services that many of us take for granted.
The causes of these disparities regarding health care access are
many and include:
--Lack of training for physicians and other health care providers in
the treatment and care of persons with intellectual
disabilities.
--Societal misunderstanding of mental and developmental disabilities,
even within the healthcare system.
--Lack of health promotion and education targeted to individuals with
intellectual disabilities and their families.
--Lack of research focusing on the specific health needs of persons
with intellectual disabilities.
--And, finally, lack of enforcement, education initiatives, and
promotion of governmental policies and regulations designed to
ensure full inclusion of this group at all levels of society
and the community.
Colleagues, it distresses me that the lack of prevention, diagnosis
and treatment of common health conditions in these individuals is
compounding the complex set of challenges they already face--challenges
that prevent them from accessing and enjoying optimal health and well-
being.
We are at a threshold today, colleagues. Which way will we go? We
have disparities--it's a tragic fact--individuals with intellectual
disabilities live sicker and die younger--we know that--But what now?
Will we continue age-old initiatives that have achieved progress at
a snail's pace, or will we dare to go in a bold new direction?
Hippocrates said that extreme illnesses require extreme remedies.
My friends, the lack of equality in health for individuals with
intellectual disabilities is an extreme illness that requires an
extreme remedy.
What are we to do, then, you might ask? I don't pretend to have all
the answers, but allow me to share with you Five Basic Challenges that
I believe we must meet if we are to reduce health disparities affecting
individuals with intellectual disabilities in this country of ours.
Challenge Number One is the challenge of ensuring that this
nation's healthcare providers receive training and acquire experience
in caring for persons with intellectual disabilities.
The results of a research study commissioned by the Special
Olympics--which surveyed more than 2,500 medical and dental school
deans, medical and dental residency directors, and medical students--
are disturbing, to say the least.
Physicians and dentists surveyed in this study reported a general
lack of competency to treat individuals with intellectual disabilities.
Some 52 percent of medical school deans, 53 percent of dental
school deans, 32 percent of medical residency program directors, and 56
percent of students responded that graduates of these programs were
``not competent'' to treat people with intellectual disabilities!
Furthermore, 58 percent of medical school deans and 50 percent of
dental school deans reported that clinical training regarding
individuals with intellectual disabilities was not a high priority.
Most medical school deans--81 percent--said the primary reason for
not training students in more specialized ways was ``lack of curriculum
time.''
Similarly, 81 percent of medical school students lack any clinical
training regarding individuals with intellectual disabilities.
The good news is that the majority of medical and dental school
students--around 75 percent--indicated they are interested in treating
people with intellectual disabilities as part of their career.
Furthermore, nearly all medical and dental school deans and
residency program directors reported that they would implement a
specific curriculum regarding treatment of persons with intellectual
disabilities, if given one.
However, it is clear from this study that changes are not going to
be made in medical and dental school training unless schools and
residency programs receive help in developing and implementing a
curriculum that focuses on the care for persons with intellectual
disabilities.
With the help of federal funding, in New York State we are doing
just that. The State Health Department and the Developmental
Disabilities Planning Council have partnered on a new initiative to
provide pediatric and family medicine resident physicians with a
curriculum designed to improve their knowledge, skills and awareness of
issues facing individuals with intellectual disabilities.
This curriculum provides medical residents with direct experience
regarding individuals with intellectual disabilities and their families
in their homes, in community agency settings, and in clinical settings,
so that they can see first-hand the multi-dimensional and complex
issues facing these individuals.
Currently, 12 residency programs in New York State are
participating in this pilot program, which uses the ``Parent Partners
in Health Education'' training curriculum that includes lectures,
clinical experiences, and at-home parent interviews.
This is a great program, but additional funding from the federal
government and foundations will be needed in order to reach our goal of
training all medical and dental providers in the special needs of
individuals with intellectual disabilities.
Challenge Number Two is the challenge of ensuring that individuals
born with an intellectual disability are identified early in their
lives and provided with access to critical health related services.
This can make a tremendous difference in their long-term health and
well-being.
Currently, all 50 states provide some level of newborn screening
for diseases and conditions that can cause disabilities. New York State
provides the largest free newborn screening program of its kind in the
nation. While most of the disorders we test for are rare, they are
serious and could cause illness, mental retardation, or even death if
not treated in the first weeks or months of life.
Therefore, by testing infants shortly after birth, we can identify
conditions and diseases early, so that these children get treatment
right away.
Studies have confirmed that children with genetic and metabolic
conditions identified by newborn screening experience fewer
developmental health problems and function significantly better in
daily living than children who are later identified with these
conditions by their physicians.
Regarding the higher prevalence of hearing loss in people with
intellectual disabilities, New York is among 37 states that are
conducting Universal Newborn Hearing Screening.
It is known that early identification of hearing loss and provision
of appropriate interventions--including amplification and teaching and
therapeutic services--has been well established in preventing
intellectual problems that are associated with hearing loss in young
children, whose hearing loss otherwise may go undetected and untreated
until later in childhood.
Challenge Number Three is the challenge of supporting and expanding
healthcare initiatives that have been shown to increase prevention,
diagnosis, and treatment of health problems in individuals with
intellectual disabilities.
Again, I must emphasis how important it is to identify individuals
with intellectual and developmental disabilities as early as possible,
because early intervention is critical. The importance of early
intervention services in improving children's development and in
helping families to enhance their children's development is very well
established in scientific literature.
As you know, the Early Intervention Program, which is established
in Federal Law under the Individuals with Disabilities Education Act,
provides therapeutic and supportive services to children ages birth to
three years who have diagnosed physical or mental conditions known to
result in developmental delays.
I am proud that in New York State we are leading the nation in
identifying young children with developmental disabilities and
providing them with access to critical services. Based on the latest
data, New York State's Early Intervention program serves nearly 4.3
percent of children ages birth to 3 years old--the highest percent of
children served by any state.
Similarly, I am proud that New York State is leading the way in the
development and implementation of clinical practice guidelines designed
to achieve optimal health and development for these young children.
To date, with the help of independent panels made up of
professionals and parents, the New York State Health Department has
issued three evidence-based clinical practice guidelines on the
assessment and intervention of young children with autism and pervasive
developmental disorders; communication disorders; and children with
Down syndrome.
Shortly, we will also be issuing three additional guidelines
governing the assessment and interventions for children with motor
disorders, hearing loss, and vision impairment.
These and other science-based clinical guidelines would benefit
children with intellectual disabilities across the United States. I
encourage the Subcommittee to explore ways the federal government can
support the replication and expansion of these New York guidelines and
have them supported nationwide.
Regarding the 2002 Surgeon General's Report, among its many
recommendations it calls for the identification of a package of health
care services specifically designed for individuals with intellectual
disabilities that are known to produce good outcomes.
I think that is good, but I recommend we take that one step
further. Let's develop a set of science-based clinical guidelines
covering the recommended care and treatment of individuals with
intellectual disabilities, and work with the state medical societies in
each state to distribute the guidelines and provide education to
physicians on how to use them. This is another initiative in which this
Subcommittee and the federal government could play an important
supportive role.
Colleagues, we know that bias and discrimination have major
detrimental effects on the health and well-being of those who are
affected by intellectual disabilities.
Lack of acceptance and inclusion--frequently accompanied by
ridicule and disrespect--are known to contribute to depression and
behavioral problems in persons with intellectual disabilities.
Therefore, Challenge Number Four is the challenge of educating all
Americans, particularly our young people, to help prevent and dispel
stereotypes--thereby promoting full acceptance and inclusion of
individuals with intellectual disabilities.
Colleagues, if we are going to reduce stigma and discrimination, we
have to understand and address its root causes.
Let there be no doubt--stigma is rooted in ignorance. It is based
on a fear of the unknown.
Colleagues, the reality is that individuals with disabilities may
make some of us feel uncomfortable because they remind us of our own
vulnerability.
We need to be aware, not only of individuals with disabilities in
our midst, but also of our own attitudes and feelings toward them.
Often we find it easier to isolate and ignore those whose experiences
confront the myth that we have control over our lives and destiny.
In New York State, we have extensive experience in conducting
educational campaigns that have focused on dispelling stigma. Take AIDS
for example. Our experience in dispelling stigma made one thing very
clear:
The more people know about a disease or a condition, the less
fearful and more understanding they will become.
So, colleagues, we need to ensure that the public gets the correct
information about what intellectual disabilities are all about. Not
their perception, but its reality.
To start accomplishing this, we must promote public understanding
and acceptance of people with learning disabilities by raising their
visibility. In a sense, we must put a human face on this condition. Too
often, individuals with intellectual disabilities are invisible in our
society. We may know their numbers, but we don't know their faces.
Therefore, I am asking for your support, Senator Harkin, and that
of this Subcommittee. We are in need of a national public information
campaign to promote understanding and acceptance of individuals with
intellectual disabilities.
I am talking about over 50 million of our citizens--those who by no
fault of their own are found in communities that traditionally lack
clout to make the world stand up and take notice.
To start in this national campaign, I urge you to support the
Special Olympics funding request to expand its ``So Get Into It''
program--a curriculum-based program currently being used in 3,500
schools across the country.
This initiative teaches elementary, middle and high school students
about intellectual disabilities while empowering them to include,
understand and respect these individuals.
Finally, Challenge Number Five is the challenge of supporting and
funding research that focuses specifically on the health needs of
individuals with intellectual disabilities--research that should result
in the development and identification of ``best practices'' and
clinical practice guidelines specifically targeted to this group.
Colleagues, I urge you, however, not to develop a single research
study or intervention without the input of the individuals and families
we are trying to help.
I believe that, if we are to succeed, researchers must be able to
step into the shoes of the those they seek to help.
As the proverb says--you cannot tell me what to do unless you have
walked a mile in my shoes!
I urge this Subcommittee, therefore, to support federally-sponsored
clinical research investigation programs that focus on identifying the
causes of, and solutions to, health disparities affecting individuals
with intellectual disabilities.
And added to that request is the equally important support for
better data collection on individuals with intellectual disabilities.
The lack of comprehensive data on persons with intellectual
disabilities is one of the biggest barriers we face in overcoming the
inequities and disparities of health affecting these individuals.
After all, we cannot expect to determine the needs of the future if
all we have is the incomplete data of today.
Senator Harkin, I want to thank you individually and encourage your
continued strong support for the Special Olympics Healthy Athletes
initiative. This program has a proven track record of identifying and
treating health problems affecting persons with intellectual
disabilities through health screenings conducted in conjunction with
the Special Olympics games.
With federal funding at the fully authorized level, this program
could be strengthened and expanded, so that more Special Olympics
athletes benefit from these screenings.
Members of the Subcommittee, today I have presented five challenges
and offered some suggestions on how we can meet them. I thank you for
allowing me to offer my thoughts and suggestions on ways to improve the
health status of individuals with intellectual disabilities.
As we proceed with our collective efforts to improve the lives of
individuals with intellectual disabilities--side by side and hand in
hand with affected individuals and their families--let us remember the
words of Yehuda Bauer, the holocaust historian, who said: ``Thou shall
not be a victim, thou shall not be a perpetrator, but above all, thou
shall not be a bystander.''
As the future of individuals with intellectual disabilities is
being decided, let us not be bystanders.
Thank you.
Senator Harkin. That will take your breath away. Thank you
very much, Dr. Novello. Quite a tour de force there. My
goodness. Well, let's see now. Where was I?
Tim, again, my deepest thanks for your great leadership,
and we all just admire you so much for you and your whole
family.
Of course, I would be remiss if I didn't mention the male
side of the Shriver family also. Also, as you all know, it was
Sergeant Shriver who started the Peace Corps under President
Kennedy. You know, I still see these young people going off or
coming back from the Peace Corps and thinking, you know, that
really is the face of America abroad. That's what America ought
to be about.
We thank Sergeant Shriver for his great leadership for all
the years of making the Peace Corps what it is today. Tim you
had three things you were urging us to do. Now, obviously some
of that Dr. Novello testified to. It's worth tell us again,
what should we be doing?
Mr. Shriver. Listening to Dr. Novello. That's what we
should be doing. I am used to in my family being upstaged by
women but never two so rapidly. Let me just before I answer
your questions also recognize another member of the Board,
Stacey Johnston, who is here up front, an athlete
representative on our board. I don't know if there's any
others, but Stacey, will you stand, please? Another one of our
international leaders.
Senator Harkin, I would just say we proposed really three
areas of work where the Federal Government's role we think can
play a significant role. Health, which we've heard a lot about
today; education, which Dr. Novello mentioned, where extending
the challenge of inclusion and the challenge of acceptance to
nondisabled young people so that they become part of the
solution, where we've tried to expand our ``Special Olympics
Get Into It'' program, which is a service learning program,
around the world. We're struggling to get support, of course,
could use some additional support.
We have a new effort which we're focused on early
intervention, as Dr. Novello said, children ages 2 to 6, home-
based programs and day-care center programs to promote physical
activity. So those kinds of things are very important, and
again, support in those areas would be fantastic.
The third area we won't talk about a lot this week is our
international work. We proposed to USAID over the last several
years increased support that this kind of work, citizenship
building, the creation of volunteer institutions and citizen-
based organizations as a part of empowerment programs and
education and development work around the world.
When I read the paper and people say, ``Well, we're trying
to figure out our strategy for public diplomacy. We're trying
to figure out how to present the best face for America,'' to me
I'm stunned. You mentioned Peace Corps. Special Olympics
programs are a big one throughout the Muslim world. They bring
together people across religious barriers, across gender,
across age, and across income demographics. Frequently these
are supported by members of the United States, expat people who
live in these countries working alongside their indigenous
volunteer networks.
I mean the face of America is very clear to me. The best
face of America has always been, as both Dr. Gerberding and Dr.
Novello said, that side of the United States where citizens
band together to try to do something that is right for their
communities, for their families in a way that empowers them to
make the dream of the United States, which is always what it
will be, a reality. Why we can't--Federal policy doesn't run
behind that, I don't quite understand. I don't have an answer
for that.
But I would say that we have the capacity as a movement to
expand rapidly in the developing world, not to mention in place
of tension. We have postconflict programs in places like Bosnia
and places like Rwanda. We have several thousand athletes
competing in Kigali once a year and beginning with a community-
based programs there across ethnic groups.
Do we have support from the Federal Government? Do we have
support from political institutions? Largely not. Are they
inexpensive? Incredibly inexpensive. You can do them for just a
few thousand dollars in some of these countries. But its an
uphill battle to rethink, if you will, the potential of our
population to be a powerful force for change, not just a force
for pity.
We talk that rhetoric. Living it is a different story. So I
would just say that quite specifically the support for the
authorization which you and others have supported in the past
for our work abroad and in schools and in health care here in
the United States is obviously a priority for us. It's the
place we think we can make the most difference.
Are there bigger issues? Absolutely. Dr. Gerberding has
alluded to them. There are insurance issues. There are Medicaid
issues well beyond our capacity to impact. But it is
frustrating to hear person after person talk of the neglect and
the oversight. To talk to people on the Hill and have them say,
you know, ``Busy year, tough year. Can't get to that now.''
Obviously that's not been the response we've gotten from you or
from Ellen or from people on your staff. But we really would
love to get to a point where some kind of a national convening
would take place where people would come together and say,
``Once and for all we are going to take this seriously.'' That
would be my hope. Thank you.
Senator Harkin. $15 million?
Mr. Shriver. Right. We can't get it.
Senator Harkin. Dr. Gerberding and Dr. Novello both--Dr.
Gerberding, I need to know more what we can do for the training
of clinicians and how we can get this as part of the training
that they go through. I'd like to work with you on that. It
seems to me most medical schools in the United States have some
form of Federal support one way or the other. I'm just thinking
ahead. That's all. Maybe we might want to do something along
that line. Do you have any further thoughts on that that you
might share with us?
Dr. Gerberding. Well, it's clearly an absolute need. I
agree with the statement that students want this education.
They have the same passion you see in this room for treating
people with intellectual disabilities or other disabilities,
but they don't have the training. It is very possible to
influence the curriculum in medical schools. We've done that in
many examples where there were unmet needs in the past. I think
about HIV infection and what's happened in medical schools to
solve that problem.
I also wanted to show you, these are two videos that have
been put together by the Lions Club in conjunction with the
Special Olympics that are teaching how to improve the vision of
people with intellectual disabilities, and one is targeting
professionals in eye care, and the other is targeting students
who are learning this. So, you know, these are cheap, very
cheap ways to try to get the information, the learning out.
Until we have an advanced curriculum within the professional
schools itself, there are other things that we can do. We can
do them right now to make a difference.
Senator Harkin. I mentioned in my opening statement--and I
want to get back to it--we've been working on it for some time
with Lee Perselay and others about introducing legislation on
preventative health care, wellness programs. I've been focused
on that in the nondisabled sector, and I want to now focus on
it in the disabled sector. Not just people with intellectual
disability, but all people with disabilities.
You didn't mention it in your testimony, but in your text
you mentioned something about a program in Montana and in South
Carolina, I believe it was, funded by the Centers for Disease
Control about demonstration--there were wellness demonstration
programs. I just would like to know more about them and what
you might have found in those programs.
Dr. Gerberding. Yeah, I would be happy to provide the
expert who can discuss it with you personally, but, for
example, the program in South Carolina is a program that really
demonstrated--in fact, data are published in a peer review
journal--demonstrated that people who are intellectually
disabled can lose weight using the same kind of structured
steps that anybody would use if they wanted to commit to better
nutrition and more exercise. Significant reductions in body
mass index as a consequence of the supportive program.
Our challenge with this, as with so many of the things we
do at CDC, it's one thing to be able to show you know the way
forward. It's another thing to be able to scale that
intervention appropriately so that all people have access to
it. Where we really need help is the scaling. The research is
important, but it's even worse to know what to do and not be
able to do it because you don't have the resources and the
investment for the scaling.
Senator Harkin. I need to know more about that. Our staff
is going to work with you on that. To both Dr. Novello and Dr.
Gerberding, I was talking to a group in Iowa. They wanted to
start a program which would help coordinate the health care of
persons with intellectual disabilities. In this program
visiting nurses would actually go to a number of group homes
for persons with intellectual disabilities to make sure they
were receiving appropriate medical care, help them to
coordinate that care.
In the case of the particular population in Iowa, the
actual medical services would be paid by Medicaid. But not the
coordination services. You can't really do this unless you have
coordination services. So one of the purposes of this
demonstration is to show that it will actually save Medicaid
dollars.
I guess what I'm trying to ask you is if you've done
anything like this in your State or if you know anything about
this, Dr. Gerberding, or have done it elsewhere and how we
might get over that hurdle of coordination services. That's a
problem.
Dr. Novello. One thing, Senator, that we're doing in New
York that covers some of this issue is the issue is--when I
worked in UNICEF for 5 years with Mr. Jim Grant, he used to
tell me, ``What you cannot get by altruism, then get it by
guilt.'' I have found in New York I could not have anyone take
care of the poor.
So what I did, I did school-based health clinics, which
would be the same as you're proposing. I couldn't get doctors
to come and take care of the children in the schools because
Medicaid pays them a fee. So what I did is I was able to talk
to the legislature, and they gave me the ability of paying them
a fee for service, which is double the amount. Therefore I have
no problems now with doctors coming into the school-based
clinics.
But the issue which I thought was crucial, I got the deans
of medical schools, the deans of nursing schools, and the deans
of social work in the senior year of those to be then the
doctors, the nurses, and the social workers of the school. It
liberated the school nurse to know that there was a
professional taking care.
But I have looked into the data now. I have seen, A, the
kids believe that I can be you, because the age of the visitors
that take care of their health is equal. So that makes them
stimuli. The nurse doesn't send anyone to the emergency room
because she has a specialist there that takes care of the kids.
I send the senior of both because I don't want the parents to
believe that I'm sending a guinea pig--your son or your
daughter is a guinea pig of people learning medicine.
As of this moment I have seen less suicide. I have a lot of
depression. I have seen parents staying to work because they
don't have to come to the emergency room to pick up their kids,
and I have seen the nurses in the school system working good
and the doctors making sure that they come because I pay them
fee for service. So there's always a way. All you have to do is
find a program that works, and I would be more than happy to
share that data of New York with you.
The other thing that I think is important is grab--You can
take the horse to water, but you cannot make them drink.
Therefore graduate medical education is a lot of money that you
feds give us. Therefore every hospital wants it. Every
residency program wants it. If you are able to insert something
in there that says, ``Thou shall provide care and teaching
regarding intellectual disability,'' they will.
The third thing is in New York we found during the Towers
when September 11 came when I send everyone out there to take
care of the psychological problem that I found on September 11,
then I saw when I paid at the end of the month, my mental
health was almost flat, but my cardiac was very elevated. When
I asked why is that the case, the issue was that in moments of
stress if you don't know the culture and you don't know the way
people feel, you're going to misdiagnose. Therefore I found
that every time that a minority went, they say, ``I have a pain
in my heart,'' which was overwhelmed depression, but they did
an electrocardiogram.
So at this moment in New York no resident graduates unless
they have 8 hours paid by the State for cultural competency. I
think cultural competency would be something by which we can
have the knowledge of what is a person with intellectual
disabilities and cultural sensitivity of the place. So that's
going to be great.
Finally in the nurse and the dental, the Dental Society of
New York sued the Department of Health because they wanted more
money. But I just inserted a little thing in there that says,
``If you do not take care of the poor, in the third year I'm
going to take away your raise.'' They didn't. I took away their
raise. Now they're taking care of the poor.
Senator Harkin. Good job. Anything else to add to that, Dr.
Gerberding? Anything else anyone would like add before I go to
the next panel? Let's thank this great, wonderful panel.
On the next panel we'll call the real experts here. Peter
Farrelly; Kyler Prunty; Laurie Noll, special education teacher
from Burlington High School; Peggy Whitworth, a parent and
advocate, Arc of East Central Iowa.
Now, as they're getting seated, I just want to have you
join me in thanking our sign language interpreter. His name is
James Boyd. I want to thank you for interpreting today.
Mr. Boyd. This is Bill Ainsley.
Senator Harkin. Bill Ainsley is now taking over. Bill
Ainsley is also a sign language interpreter. We want to thank
our court reporters, Jill Kruse and Theresa Ritland, Iowa court
reporting. Thank you very much for being here today.
Well, Peter Farrelly, we'll start with you. Thank you very
much for the wonderful movie you made, ``The Ringer,'' and for
all of your work for people with intellectual disabilities.
Again, one of our previous witnesses said make the problem
visible. That was Dr. Gerberding. You helped make it visible.
We thank you.
As we did with the other panel, I'll just go down the line.
We have your written testimony. It will be made a part of the
record in its entirety. If you could just sum it up, I would
sure appreciate it.
STATEMENT OF PETER FARRELLY, AUTHOR, MOVIE PRODUCER
Mr. Farrelly. Absolutely. Thank you very much. I have to
say I'm at a disadvantage here, because Dr. Novello stole my
speech. So I jotted down a couple of notes. I'll see what I can
do. I want to say, first of all, that I am extremely honored to
be here today representing the interests of people with
intellectual disabilities. Thank you so much for having me.
It's a great honor.
My name is Peter Farrelly. I've written a couple books and
made a bunch of movies. I'm here mainly I suppose because of my
involvement in a film called ``The Ringer,'' but we'll get to
that later. First I'd like to give you a little background
about myself. I grew up in a little town called Cumberland,
Rhode Island, back in the 1960s and 1970s. It was a great time
in most ways. I would get up in the morning and take off on my
bike with my brother and our friends, and we wouldn't return
home until dark. Our parents didn't have to worry about us even
for a second.
I remember hitchhiking to Little League games, believe it
or not. We wouldn't think twice about getting into a stranger's
car. We had a milk man back then and a bread man and a fruit
and vegetable man, and it was a time when dogs were free to
roam the neighborhood. My dog Winnie actually had friends.
Occasionally she and a bunch of other mutts would blast through
the middle of our football game chasing a rabbit or some other
furry thing, though I don't ever recall them catching one.
But not everything was perfect. Frequently one of those
dogs would get hit by a car or would nip at some kid and be
sent to the, ``farm.'' At night there was a cloud of smoke that
hung over the neighborhood because each household burned the
day's trash in their backyard.
People thought nothing at that time about throwing their
Burger Chef bags out the car window, and when we did eeny-
meeny-miney-mo, it was the ``N'' word that got caught by the
toe, and the kids in the special ed class were called
``retards'' or worse. It's not that we were racists or bad
people. We knew no other description for the special ed
students, and eeny-meeny-miney-mo was just a rhyme, a bunch of
words that we were taught as children and made as much sense to
us as ``purple mountain majesty.''
What I'm saying is we didn't know any better. Just as
people today who say they got gypped probably don't realize
that the term is disparaging to gypsies. But you know what?
Eventually we learned, through education and concerted efforts
by our Government, among other groups, to spread public
awareness. One of the first times I remember thinking that
littering was wrong was when I saw the public service
announcement where Iron Eyes Cody sheds a tear as he walks down
a polluted highway. So I stopped littering, and soon we amended
our eeny-meeny-miney-mo-ing too.
So here we are 30 or 40 years later, and some things have
gotten better. At least they did for a while. Yet still today
most people have no qualms about throwing the word ``retard''
around. I did it just now, although I wouldn't have dared utter
the ``N'' word at a congressional hearing.
That's a big problem. Not because the ``R'' word is so
important. It's just a word after all, and words evolve, just
as mentally retarded was replaced by mentally impaired and then
mentally challenged and now intellectually disabled or
challenged. Soon it will be something else. Personally I prefer
intellectually different, though I'm sure in time that would
sound pretty dumb too.
But it's that ``R'' word that most shows the lack of
respect and understanding given to people with intellectual
differences. Moreover, it highlights just how few steps we've
taken toward integrating them into society, which leads me to
``The Ringer,'' a movie I developed and produced for 20th
Century Fox. It was written by Ricky Blitt and directed by
Barry Blaustein. It's about a man named Steve who tries to fix
the Special Olympics to win money.
He pretends to be intellectually different and enters the
games, then places a bet on himself, figuring that winning will
be a breeze. What he doesn't realize is that a lot of these
people are just intellectually different, not physically
different. Many of them are excellent athletes. So they kick
his butt. Though Steve is able to fool the Special Olympics
officials, he can't fool the athletes themselves, and soon a
group of them are on to him.
They decide not to turn him in, however, simply because
they're sick and tired of Jimmy, who has won the last several
Special Olympics and made the cover of Wheaties and has let it
all go to his head. Instead they train Steve, hoping to beat
Jimmy, and in the process Steve bonds with a bunch of guys he
never would have had the good fortune of meeting. He learns
something and he changes.
I wanted to make this movie from the moment I heard the
idea, not just because it was funny but because of the truth it
revealed. There were 9 or 10 special athletes that the story
focused on, and they were all different. Some were talkative.
Some were quiet. A couple were funny. Others were boring. They
were real, and they all had distinctive personalities just like
everyone else in the world. But I'd never seen that in a movie
of this type. Usually these things were about sad people living
sad lives. Those movies were about pity. I saw what we could
do. We could show the fun side of these guys, the joy of
spending time with them. Make a movie about them without anyone
shedding a tear.
I've been involved in the Best Buddies program for 10 or 15
years, and I've never cried, nor had my buddy Scott. It had
been fun, all fun, except for one time when he plowed into me
at a supermarket with a full carriage of groceries and almost
severed my Achilles heel.
So I set out to get the movie made. After 5 years and a lot
of help from Tim Shriver and Mrs. Shriver and the Special
Olympics Board of Directors, we succeeded. ``The Ringer'' is my
favorite movie of ours for several reasons. I got to work with
over 100 Special Olympic athletes for 3 months, and there were
huge laughs and lots of hugs, and nobody was stressed. I saw
how it changed my crew and myself and the athletes, and the
bonding was something I'd never experienced on a movie set
before.
When it came out last Christmas, it was a dream come true,
because it did exactly what we wanted. It entertained people,
made them laugh, but most importantly it introduced millions of
movie-goers to people with intellectual differences. It made
them more human, more fun, less scary. It made them accessible.
Several people told me after seeing ``The Ringer'' that they
were nervous during the first 20 minutes because they have
never spent any time around special athletes, but by the end
they wanted these guys to be their friends.
That's it in a nutshell right there. That's what we're
doing here. We're trying to build a bridge that will bring
people with intellectual differences into our world and us into
theirs, and we're not there yet. We're not even close. My 7-
year-old son actually asked me after watching ``The Ringer,''
``Why had it been so hard to get made?'' I couldn't answer him.
You know, he was right. ``The Ringer'' should not be a
groundbreaking film in the year 2006. It's not that crazy. It's
just about treating people with respect. This kind of thing
should have been done 30 or 40 years ago back when Iron Eyes
Cody was just starting to tell us about pollution. If it had,
then guys like me would be in a position to make something
truly groundbreaking today. But we are where we are, and steps
are steps, however small.
PREPARED STATEMENT
So I'm asking you please, please be the ones to help drive
a concerted public awareness campaign linked to solid programs
like Best Buddies and Special Olympics and NADC, the National
Association of Childhood Development, as well as others that
will provide young people with the opportunities to get to know
and make friends with the 8 million people with intellectual
differences in our country. Then maybe someday there won't be
an ``R'' word or special this or an intellectual that or any
other term for them. Maybe they'll just be, you know, people.
[The statement follows:]
Prepared Statement of Peter Farrelly
I want to say, first of all, that I am extremely honored to be here
today representing the interests of people with intellectual
disabilities. Thank you for having me.
My name is Peter Farrelly. I've written a couple books and made a
bunch of movies, and I'm here mainly, I suppose, because of my
involvement in a film called ``The Ringer,'' but we'll get to that
later. First I'd like to give you a little background about myself. I
grew up in a town called Cumberland, Rhode Island back in the 1960's
and 1970's. It was a great time in most ways--I would get up in the
morning and take off on my bike with my brother and our friends and we
wouldn't return home until dark, and our parents didn't have to worry
about us even for a second. I remember hitchhiking to little league
games and we wouldn't think twice about getting into a stranger's car.
We had a milk man back then and a bread man and a fruit-and-vegetable
man, and it was a time when dogswere free to roam the neighborhood. My
dog Winnie actually had friends. Occasionally she and a bunch of other
mutts would blast through the middle of our football games chasing a
rabbit or some other furry thing, though I don't ever recall them
catching one.
But not everything was perfect. Frequently one of those dogs would
get hit by a car or would nip at some kid and be sent to the ``farm'',
and at night there was a cloud of smoke that hung over the neighborhood
as each household burned the day's trash in their backyard. People
thought nothing at that time about throwing their Burger Chef bags out
the car window, and when we did eeny-meeny-miney-mo, it was the ``N''
word that got caught by the toe, and the kids in the special-ed class
were called ``retards'', or worse. It's not that we were racists or bad
people. We knew no other description for the special-ed students and
eeny-meeny-miney-mo was just a rhyme, a bunch of words that we were
taught as children and made as much sense to us as ``purple mountain
majesty.''
What I'm saying is, we didn't know any better--just as people today
who say they got ``gypped'' probably don't realize that the term is
disparaging to Gypsys. But you know what? Eventually, we learned.
Through education and concerted efforts by our government, among other
groups, to spread public awareness.
One of the first times I remember thinking that littering was wrong
was when I saw the public service announcement where Iron Eyes Cody
sheds a tear as hewalks down a polluted highway. And so I stopped
littering and soon we amended our eeny-meeny-miney-mo-ing, too. So here
we are, 30 or 40 years later, and some things have gotten better--at
least they did for a while--and yet still today most people have no
qualms about throwing the word retard' around. I did itjust now--though
I wouldn't have dared utter the N-word at a congressional hearing.
That's a big problem. Not because the R-word is so important. It's
just a word after all. And words evolve. Just as ``mentally-retarded''
was replaced by ``mentally-impaired'' and then ``mentally-challenged''
and now intellectually-challenged and soon it'll be something else.
(Personally, I prefer intellectually-different, though I'm sure in time
that would sound pretty dumb, too.) But it's that R-word that most
shows the lack of respect and understanding given to people with
intellectual differences. Moreover, it highlights just how few steps
we've taken toward integrating them into society.
Which leads me to ``The Ringer'', a movie I developed and produced
for 20th Century Fox. It was written by Ricky Blitt and directed by
Barry Blaustein. It's about a man named Steve who tries to fix the
Special Olympics. To win money. He pretends to be intellectually-
different and enters the games, then places a bet on himself, figuring
that winning will be a breeze. What he doesn't realize is that most of
these people are just intellectually-different, not physically-
different, and many of them are excellent athletes. So they kick his
butt. Though Steve's able to fool the Special Olympics officials, he
can't fool the athletes themselves and soon a group of them are on to
him. They decide not to turn him in, however, simply because they're
sick and tired of ``Jimmy'' who's won the last several Special Olympics
and made the cover of Wheaties and has let it all go to his head.
Instead, they train Steve (hoping to beat Jimmy) and in the process
Steve bonds with a bunch of guys he never would have had the good
fortune of meeting. He learns something. He changes.
I wanted to make this movie from the moment I heard the idea. Not
just because it was funny, but because of the truth it revealed. There
were nine or ten Special athletes that the story focused on, and they
were all different. Some were talkative, some were quiet, a couple were
funny, others were boring. They were real, and they all had distinctive
personalities, just like everyone else in the world. But I'd never seen
that in a movie of this type. Usually these things were about sad
people living sad lives. Those movies were about pity. I saw what we
could do. We could show the fun side of these guys, the joy of spending
time with them; make a movie about them without anyone shedding a tear.
I'd been involved in the Best Buddies program for 10 or 15 years and
I'd never cried, nor had my buddy Scott. It had been fun. All fun.
(Except for this one time when he plowed into me at the supermarket
with a full carriage of groceries and almost severed my Achilles
tendon.)
So I set out to get the movie made, and after 5 years and a lot of
help from Tim Shriver and the Special Olympics board, we succeeded. And
`The Ringer' is my favorite film of ours, for several reasons. I got to
work with over a hundred Special athletes for three months and there
were huge laughs and a lot of hugs and nobody was stressed. I saw how
it changed my crew and myself and the athletes, and the bonding was
something I'd never experienced on a movie set before. When it came out
last Christmas, it was a dream come true. Because it did exactly what
we wanted: It entertained people, made them laugh, but, most
importantly, it introduced millions of movie-goers to people with
intellectual differences. And it made them more human. More fun. Less
scary. It made them accessible.
Several people told me after seeing ``The Ringer'' that they were
nervous during the first twenty minutes because they'd never spent any
time around Special athletes, but by the end they wanted these guys to
be their friends. And that's it in a nutshell. That's what we're doing
here. We're trying to build a bridge that will bring people with
intellectual differences into our world, and us into theirs. And we're
not there yet. We're not even close. My 7-year-old son actually asked
me, after watching ``The Ringer'', why it had been so hard to get made.
And I couldn't answer him. He was right. ``The Ringer'' should not be a
groundbreaking film in the year 2006. It's not that crazy. It's just
about treating people with respect. This kind of thing should've been
done 30 or 40 years ago, back when Iron Eyes Cody was just starting to
tell us about pollution. If it had, then guys like me would be in a
position to make something truly groundbreaking today. But . . . we are
where we are, and steps are steps, however small.
So I'm asking you to be the ones to help drive a concerted public
awareness campaign linked to solid programs--like Best Buddies and
Special Olympics, as well as others--that will provide young people
with the opportunities to get to know and make friends with the 8
million people with intellectual differences in our country. And then
maybe someday there won't be an R-word or special-this or intellectual-
that or any other term for them. Maybe they'll just be, you know . . .
people.
Senator Harkin. Thank you, Peter. Now we turn to Kyler
Prunty. I have met Kyler a few times. I think he's in training
to be a special lobbyist in Washington. He knows his way around
the hallways pretty well by now. Kyler is from Marshalltown.
He's a great athlete and has been in to see us lobbying in
Washington and is well known to so many of us for his advocacy.
So, Kyler, the floor is yours. Welcome to the hearing.
STATEMENT OF KYLER PRUNTY, SPECIAL OLYMPICS ATHLETE AND
IOWA RESIDENT
Mr. Prunty. Good afternoon. My name is Kyler Prunty. I am
very grateful for this hearing today because I think people
should understand my abilities and my hopes as a person and not
focus on the things that I cannot do. I am a very proud Special
Olympics Iowa athlete. I want to welcome all of the out-of-town
guests. I am so happy to have all of you here for Special
Olympics National Games at Iowa State University. I can't wait
until the games start. I am 19 years old and a 2006 graduate
from Marshalltown High School. I graduated May 28.
I think I have accomplished a lot. You see, it is so good
to be alive. Doctors told my mom that I might only live until I
was 11. But look at me now. I am alive and 19 with plans for
things ahead. I started to get seizures at the age of 3.
Doctors said that I had TSC, which can affect the brain. It can
be in other organs too, but they were not sure.
Today I am healthy, and I have a disability to live with. I
read and write at a second grade level. Newspapers, books, and
any form need to be read and explained to me for me to
understand. I need help with shopping for groceries, making
food, and checking to see if I have the right amount of change
back. But I practice because I have goals and dreams. I want to
be independent. I want to have my own home for my dog and me. I
want to work. I want to be in Special Olympics.
I have been in Special Olympics since grade school. I have
competed in bowling, golf, basketball, skiing, track and field,
and my favorite is swimming. I have a collection of many
medals. I have met many people and have made many new friends.
Special Olympics means a lot to me. They are family. They make
me smile. I feel like Special Olympics have taught me to be a
leader and to enjoy life to its fullest, to be an athlete and
to be physically fit.
Special Olympics have let me travel and as an Iowa Global
Messenger to tell others about what Special Olympics has done
for me and what it can do for others. In 2005 I was asked to
help with the first Capitol Hill Day for Special Olympics in
Washington, DC.
It was so good to meet many Special Olympics leaders like
Eunice Kennedy Shriver, Iowa Senators Harkin and Grassley, and
Iowa Congressmen Boswell, Nussle, and Latham. I got to travel
with Iowa's very own CEO Rich and Board Member Lana. I got to
tell my story to Congress and to thank them for all they do and
to ask for funding support for Special Olympics. This past
March I was asked to go back to Washington, DC. It was so fun
to see everyone again. Some say I should be a lobbyist. We all
are lobbyists today.
After I got home, I was able to go to the State Capitol in
Des Moines and hear everyone vote yes for the National Games
bill. I was able to say thank you to State lawmakers. I am so
happy to be a part of the Special Olympics family. I have
learned to be a self-advocate to tell others about my needs and
my feelings. But there have been many hard times to get to
where I am today. My family helped me, and we told to get
people to think outside the box. Remember, every one of us have
disabilities (sic) and goals.
I continue a lot of my dreams already. I swam on my
Marshalltown High School swim team for 4 years. My coach, Mike
Loupee, who is here today, told me that I got better and better
each year. I made friends and worked hard to help the team. I
learned how to eat right and exercise and to just take care of
my body.
As a new graduate of high school, now I have a new routine.
I have a new job. I am told I do a good job at my work. I work
as a bellman at the Best Western. I clean up the parking area,
bring bed and pillows up to the rooms if they are requested,
and set up for weddings and banquets. I want to work more, but
I am limited in hours to work, as it makes problems with my
disability benefits, which I need to survive.
I just don't understand all the reasons. I just want to
work and be alive. If I work too much, I lose my benefit, but
if I work too little, I can't pay for my car that I need to get
to work. To make matters worse, the program I was in that
helped me move from school to work has been shut down because
of a lack of funding. One of the hard things to do is find work
that I like and that I am good at. The TAP program really
helped me, and I am sad that it won't be there for others.
I've had several jobs in the past few years. Some I like
more than others. People with intellectual disabilities have
different opinions, likes, and difference just like everyone
else. I like people and being around people. I like the fact
that my supervisor lets me do things that I enjoy.
By telling my story, I can get others to know how we feel
and to help us be the best that we can be. So you see that is
why I want you to know how much I love--Special Olympics means
to me and many others. Senator Harkin, I wanted you to know how
much I love Special Olympics, and now with being a Global
Messenger, I can tell more people about it.
Senator Harkin, I want to take this opportunity to thank
you for helping bring these games to Iowa. I also want to thank
you for your leadership in the U.S. Senate and to get funding
for Special Olympics Healthy Athletes program. This is so
important. I hope you will continue to help Special Olympics
and that you will convince other Senators to do the same. So
now just watch me go. I am on fire. Thank you so very much.
Senator Harkin. Do you know how much they pay lobbyists
these days? I think you'll be getting some offers in. Let me
just take this opportunity right now, if I can, to introduce
and ask them to stand Kyler's parents, Vickie and Marvin, right
here.
Now we're turning to Laurie Noll. Laurie Noll is a special
ed teacher at Burlington High School. Laurie, welcome. As I
said, your statement will be made a part of the record in its
entirety. If you'll just summarize it for us, I'd sure
appreciate it. Thank you.
STATEMENT OF LAURIE NOLL, SPECIAL EDUCATION TEACHER
Ms. Noll. Thank you very much. I have been a special
education teacher for 23 years. I have worked with students
with learning disabilities, mental disabilities, hearing
impairment, and I can tell you that my most favorite place to
stand is where these guys are because I have interpreted for
many, many people through my years, and that is my comfortable
area, and this is out of my comfortable area.
I am also a mother of three, as you can see. My son is
autistic. So--he just graduated from high school. My motto is
children are true miracles, and a teacher is their tool to help
these students find their strengths. Living independently is an
American dream, and it is part of an educator's job to build as
many skills of independence as possible.
I promote the old proverb, give me a fish, and I eat for a
day. Teach me to fish, and I eat for a lifetime. When students
are engaged, they help each other, and they learn even more.
This picture is of my special education students with some
general education students, and they're working together to
learn leadership skills so that they can be partners in a
program together.
Students that have been in my classroom have been able to
perform and go out into the public after high school with these
different jobs. I have had construction workers, stylists. They
are families. They have children. They are in college right
now. I have some that are businessmen. I have a welder, and I
even have a teacher amongst my past former students.
Special education has progressed, but we have a long way to
go, and our good teaching skills need to develop into great
teaching skills. These are the barriers that they will face as
they go forward in their teaching.
Today information is coming at all of us so quickly.
Students with intellectual disabilities are not progressing
like and they don't see the big picture that other people see.
This causes much struggle. Other countries, China and India's
children are passing our children along with many technology
areas.
As America races ahead, many of our intellectual disability
students are falling behind. The technology does have benefits
for our students and provides learning opportunities which were
never possible before, such as the scan reading pens and
Curswell computers, talking dictionaries. These are all
equipment that are used in my classroom to help my students so
that they can go into the general ed classroom and perform just
like everyone else.
The barriers with technology include the experience that
the teachers need to train so that they can train the students.
It also costs a lot of money to get these different types of
equipment in the classrooms.
Many parents and educators may not see some of the
intellectual disabilities that their child has before they
reach the age of school. So the training is not there, and the
detection to help these students from an early on age is not
prevalent. Educators need training and research needs supported
to detect early warning signs of the intellectual disabilities.
Without support of the early interventions, the students
are faced with such problems as suspension, absenteeism, not
belonging, frustration, academic difficulties, failures, and
health problems as they grow in their schooling.
One story I have is of a young man who was identified at a
very early age. He was given the proper care and all of the
technology and all of the training through the years. When I
had him in my program as a freshman in high school, which
carried him through his graduation, his vision--he told me, ``I
want to be a welder.'' I'm going, ``Okay. You're going to be a
welder. We just have to figure out how we're going to do
that.'' This young man could not read anything. He could not
find his name in a paragraph if he had to. So the technology
and the equipment that we needed to use to help him be able to
be successful was awesome.
He comes back, and he visits my classroom, and he tells
stories to the students that I now have in my classroom. ``You
know, having a disability is a really hard job, and it's even
more difficult to get a job.'' He said, ``I am very lucky I
have a job. I am a welder.'' You know what? He makes more than
the beginning teachers that have taught him. So I'm very proud
of him.
Goals can be reached with the proper support and
identification. We just need that early identification and the
tools to help find those intellectual disabilities. No Child
Left Behind is a word we all know. There are funding gaps in
learning, and it has caused many problems with the funding.
However, one of the good things that it has done is it has
helped us to identify where the gaps are in our students. So
now we're able to see this is where the problems are, and we
can move on from here. No Child Left Behind has allowed special
education teachers a new way to look at education. However, to
make the needing and meet this, we need the funding to support
the impact that this program is showing us.
Prior to No Child Left Behind, special education was
thought of as a second thought. We received the old leftover
books for our students. We received the broken equipment to use
for science, and we always got the closet for our classroom.
Now with No Child Left Behind, our students are able to be out
amongst their peers. They can be in classes with their peers,
have the right textbooks, have the equipment they could not
before.
We just need to make sure that our teachers have the proper
support so that they can be with their students and help them
have success. In order for special education teachers to keep
up with the changing world, they need professional development,
time to collect and analyze data, time to learn new curriculum,
and time to learn the new technology. In today's technological
world, there are no limits. It just takes looking at things
from a different perspective and reaching for the gold.
No Child Left Behind has changed how we look at data, and
the accountability has teeth in the results. Through data
educators realize we still have problems, and there is an
urgency to solve these problems. No Child Left Behind has
helped us to see where to start. We now need the funding to
help us with that early intervention. We need to start very
early to provide support for our disabled students before they
give up on us.
As a young child has bright eyes and eager to learn, with
an intellectual disability as they reach the secondary
education, they have had so many failures, you see what
happens. A child does not wake up one morning, eat breakfast,
tie his shoes, walk to school, and then declare to his teachers
he's dropping out.
We as educators failed that child by not identifying his
needs from the early on age is where we need to start,
therefore to get the help right away before they even reach
school so we don't have our students dropping out of school. We
are making progress. However, our weaknesses are more evident
today with the accountability of what is being shown.
In 1987 I worked with a team who went to homes of special
education individuals to determine what they were doing after
high school, what worked when they were in school, and what
didn't work and what we still needed to try to do. It was such
an eye-opener to walk to the address that I had on my paper and
to be met at the door with a gun because they were so afraid it
may be a bill collector or who was coming to that door.
Some of the people I found were living in dirt garages, and
they had a cot in there. You could see a little stove that they
had put up there. That was their home. Others I met in a jail.
Others I found deceased. This showed me that we were not doing
a very good job, and we had a long way to go in 1987. I think
we're getting there. It became clear that we need to do a
better job in preparing our special students for postsecondary
needs.
As I reflect today on our past survey, I feel we are doing
a much better job of educating our intellectual disabled youth
than in the past and we're working to help them meet the
demands of today. To build a successful future, we need to make
connections, get funding, have the needed support, and provide
enough of the funding and time to make all of this work. As a
team we can move mountains and reach many goals if we all work
together and have the same focus. I want to say thank you for
allowing me this time to talk and share my vision.
Senator Harkin. Great. Thank you. Laurie Noll, thank you
very much. My goodness. That was great. I'll have some more
questions.
Now we'll turn to our final panelist, Peggy Whitworth, a
longtime friend of mine, parent, advocate with Arc of East
Central Iowa. She's the executive director of Brucemore in
Cedar Rapids, and her son Patrick, whom I know and have had the
privilege of knowing for quite a while now. Quite a remarkable
young man. There he is. I think he just gave you permission to
go ahead. Peggy, welcome, and please proceed.
STATEMENT OF PEGGY BOYLE WHITWORTH, BOARD MEMBER, ARC
OF EAST CENTRAL IOWA
Ms. Whitworth. Thank you very much for the invitation to be
here. I think almost all the problems could be solved if we put
Kyler and Dr. Novello on the road. What a duo that is. As
Senator Harkin said, I am a parent and advocate and a fairly
new member of the Arc Board in East Central Iowa. My 34-year-
old son Patrick lives in a group home, works at the Linn County
Administration Building, and right now Patrick says to me,
``You know, I like my life.'' No parent can have anything
better. Nothing could ever be more gratifying.
However, it's all tenuous all the time. Patrick's
disability is a very minor part of who he is. He's bright,
funny, very social, compassionate, and an all-around good guy.
Patrick got sick when he was 1 year old suffering three
episodes of unconsciousness that resulted in brain damage and
mental retardation. At that time we were told he might live 1
year. He would never walk, and he would never read.
Fortunately, none of that happened. Patrick was born at the
right time, because before Patrick 34 years ago there weren't
many programs. In the last 34 years there have been huge gains
in attitudes and in services for people with disabilities.
My comments deal more specifically with the transition from
school to work for people with disabilities. The Cedar Rapids
school system has some of the best educators around, many of
whom taught Patrick. There were some fairly bureaucratic ideas
at the central administration. But the principals and the
teachers in Patrick's school saw him as a student, not a
disability.
Through Options of Linn County, he has had some excellent
work experiences. Specifically I would like to acknowledge
Aegon USA, which is a real leader in employing people with
disabilities. Patrick worked at Aegon for 7 years, had a very
happy and rewarding experience. His supervisor changed, and
suddenly the attitude changed. Patrick didn't have a job. His
coworkers still do not know what happened, but he didn't have a
job.
Patrick, like most of us, his identity is very closely tied
to his work. Not having a real job was devastating, and he did
have some problems with depression, and he was very, very down
for a long time. Options of Linn County, which is a fine
organization, part of the county, that is the vehicle through
which Patrick and people like him find work. After several
futile efforts to find a job, they turned to me and said, ``You
know more people than we do'' and in essence just gave up.
At that point in tears, which isn't my style, I called Linn
County Supervisor Lu Barron, and I said, ``This is a program of
the County.'' And she was at my work in 20 minutes. Talk about
a responsive public servant. As a result of that call, she
looked around and found out at the County Administration
Building they had no Options employees. So she challenged the
people at the County to--``What work, what tasks do you have
that someone with special needs might be able to do?''
So technically Patrick now is a subcontractor to the Board
of Supervisors. He is sort of farmed out to the auditor, the
treasurer--he wanted me to list everybody--human resources,
several different groups. But his office is actually in the
purchasing department. There's this wonderful head of
purchasing, Britt Hutchins. It's not his job at all, but he
makes room for Patrick. He encourages Patrick, and he provides
general supervision.
One thing we might also note is that many of the jobs that
Patrick does like putting the property tax bills in envelopes,
preparing packets for precinct workers at election time, these
are all essential things. Patrick gets paid a percentage of
prevailing wage. So actually the county is saving money.
He really has a very good time at work, and there are some
things that--parts of his job he doesn't like. Like he shreds a
lot of documents. We have these discussions that every job has
parts you like and some that you don't like, and there's a
reason it's called work, you know.
Patrick does need assistance and supervision. There are
times when he isn't totally attending to task. His temper is
short, and he has to be corrected. But the people there are
used to Patrick. They work with Patrick, and generally it is
working very well.
Their only challenge is the funding pie is not growing, but
the slices are. More and more people are asking for funds, and
Patrick's job, his group home, all these things rely on people
doing wonderful things. LinnHaven, who operates the group of 28
sites that are home to 82 people in Cedar Rapids, again, we
have incredible people doing wonderful work.
Patrick lives with what he calls two great guys and has
wonderful staff of Marlys Ingles and Lorie Sharp. They are
supporting, caring, and appropriately demanding of the guys.
They all have lots of responsibility. Patrick explained to me
on the way over he has to get home tonight because Sunday night
is when he cleans the bathroom.
But the funding problems and the rising health costs are
cutting some of the benefits of the staff. These women don't
make very much money, but they do make an independent life very
possible for these three great guys. With cuts in benefits,
they may have to seek other employment, and that's going to
have a devastating effect on lots of lives.
The gains in the quality of life for people with
disabilities are wonderful, but much more is possible. If we
look at things in a new way, we might be able to try new
things. With Iowa's approaching labor shortage, here is an
untapped source. It will take a little effort. Okay. It will
take a lot of effort, but it is worth it.
PREPARED STATEMENT
I'm not sure why I am on earth, but I know why Patrick is.
He is here so people know that people with disabilities are
still people. We all have disabilities. Some are just more
apparent than others. Thank you, Senator.
[The statement follows:]
Prepared Statement of Peggy Boyle Whitworth
Today I speak as a parent, an advocate, and a fairly new Board
Member of the Arc of East Central Iowa. My 34 year old son, Patrick
Whitworth, lives in a group home and works at the Linn County
Administration Building. Right now, Patrick says, ``You know I like my
life.'' There are not words more gratifying for any parent.
However, it has not been easy to get to this point and it is all
tenuous, all the time.
Patrick's disability is a minor part of who he is. Patrick is
bright, funny, very social, compassionate and an all around good guy.
Patrick got sick when he was a year old suffering three episodes of
unconsciousness that resulted in brain damage and metal retardation. At
that time, we were told he might not live a year, would not walk and
would never read. Fortunately, none of that happened. Patrick was born
at the right time. In the past 34 years huge gains have been made in
attitudes and services for people with disabilities.
My comments deal with the transition from school to life after
school for people with disabilities. The Cedar Rapids School has some
of the best educators, many of whom taught Patrick. Some attitudes by
central administration were rather bureaucratic, but the teachers and
principals saw Patrick as a student, not a disability.
Through Options of Linn County he had some excellent work
experiences. Specifically, I mention Aegon USA which was an early
employer of people with disabilities and continues to be a model
company. However, after seven happy and rewarding years at Aegon, his
direct supervisor changed, her attitude was different, and his job
ceased. His ``normal'' co-workers did not know how this happened, but
it did.
Like most of us, Patrick's identity is tied in part to his job. Not
having a ``real'' job was devastating and he had some very down times.
Options of Linn County, a fine organization, is the vehicle through
which people like Patrick find work. After several futile initial
efforts were futile and they turned to me. ``You know more people, so
you should, in essence, deal with this.'' At this point, literally in
tears, I called Lu Barron, a Linn County Supervisor, since Options is
an arm of the county. She came to see me in twenty minutes--talk about
a responsive public official. Her action was immediate, that Options is
part of the county and the county had none of their clients employed.
Supervisor Barron didn't create a job for Patrick, but she called on
the county staff to re-think some of their work and see what was
possible.
As a result, Patrick is officially a sub-contractor of the Board of
Supervisors and is farmed out to Purchasing, the Treasurer and Auditor.
The positive environment, the support of many county employees, and a
lot of hard work by many people result in a very happy employee. He
does work that matters--mailing the tax bills or collating materials
for precinct workers at election time. Those he likes. He isn't very
fond of shredding, but knows in every job some things are fun and some
aren't. There is a reason it is called work.
Patrick does need assistance and supervision. There are times when
he is not totally attending to task, when his temper is short, when he
should be corrected. Britt Hutchins, the head of purchasing for Linn
County, provides over-all direction to Patrick. This wonderful man does
much more than he is paid to do and as a result, Patrick has the
dignity of being a worker. And the County is getting essential tasks
completed as a lower cost. Patrick is paid a percentage of the
prevailing wage based on productivity.
Unfortunately, the funding pie for many services is not growing but
more slices are being made. The threat is that additional funds are
taken from another important source.
The same problem holds true for LinnHaven, the operating group of
28 sites that are home to 82 people. Again, incredible people doing
wonderful work. Patrick lives with ``two great guys'' as he expresses
it. The staff, Marlys Ingles and Lorie, are supporting, caring, and
appropriately demanding of the guys. They all have responsibilities.
Sunday night, Patrick has to clean the bathroom! Something he tells me
after spending time at my house.
But, funding problems and rising health costs mean cuts in the
benefits for this staff. These women don't make much money and they do
make an independent life possible for the three great guys. With cuts
in benefits they may have to seek other employment and this will have a
devastating effect on many lives.
The gains in the quality of life for people with disabilities are
wonderful. But much more is possible, if we look at things in new ways
and try new things. With Iowa's approaching labor shortage, here is an
untapped source. It takes a little effort, o.k., it takes a lot of
effort but it is worth it.
I'm not sure why I am on earth, but I know why Patrick is. He is
here so people know that people with disabilities are still people. And
we all have disabilities, some are just more apparent than others.
Senator Harkin. Thank you all very, very much. Wonderful
testimony.
Peter, let me ask you a question. Some of us notice things
differently than others. Through all my work on disability
issues, I go to movies. Now, ``The Ringer,'' of course, was
about people with disabilities. So it was the focus of the
movie. But a lot of times I'll go to a movie, and I'll watch
out of the corner of my eye. I watch just average scenes, you
know, people moving in and out of buildings or doing this, you
know, peripheral stuff of the movie that nobody ever notices. I
just try to see how many people with disabilities I see, just
the kind of people you see every day when you walk into an
office building or you go down the street or you go in a
restaurant, whatever you want.
Well, I can count on just about one or two hands. Every
once in a while when I see one, it registers. But more often I
go see a whole movie. You won't see one person with a
disability ever, ever. I mean not that it's central to the
character but I mean just normal people that are the backdrop
of a movie. Talk to me about that. Is this just hard to do? Why
aren't they reaching out and showing us more in the movie?
Mr. Farrelly. It's criminal that they're not. This has been
a real concern of mine and my brother's for the last 12 years
that we've been making movies. I cannot honest--I could
probably say that we've had disabled people in every one of our
movies.
There's a group called the Media Access Committee or Group
in Los Angeles that represents actors with disabilities.
There's a couple thousand actors. One percent of them work.
They never get out there. It's insane. What I have done is I've
been appealing to casting agents because, you know, I've never
read a script that said, you know, ``Bob's girlfriend enters
the room'' and in parentheses ``excellent hearing'' or ``not in
a wheelchair.''
You know, there's an old joke--there was an old joke, and
some of you--most of you have heard of it, but I'll repeat it
just to make my point, which is that it was an old riddle which
was years ago that there's a guy and his son in a car--you've
probably heard this--and they're driving somewhere. They have
an accident. They take the father to one hospital and the son
to the other. When the son comes into the emergency room, the
doctor comes out and says, ``Oh, my God, that's my son.'' The
question was, how could that be? People would scratch their
heads. Well, the doctor was his mother, you know, but people
think doctor, male. That's what they would think.
When people read scripts, they think able-bodied, and they
shouldn't. They should not think that. They do. That's what
we're trying to overcome. We do our best to do that. You know,
I have a friend--I happened to be with a guy once who broke his
neck. He's a good friend of mine named Danny Murphy. He broke
his neck the day Richard Nixon resigned, August 8, 1974. He's a
quadriplegic, and he's been in several of our movies. He's an
actor now.
But he came to me after ``Dumb and Dumber'' and said, ``You
didn't do enough.'' We had a little in there, but he said, you
know, ``What I want to do, see, is I want to be in a movie, and
I want to be a bad guy, because anytime you see somebody in a
movie who's disabled, they're the angel. They're the sweet
person.''
He said, ``People are afraid of us because they think we're
better than them somehow.'' He said, ``If there's going to be a
stereotype about people in wheelchairs, maybe it's that they're
a little crazy and did something nuts to break their neck,'' he
said, ``not that they're nicer or better than anyone.''
So our next movie was ``Kingpin.'' He was in it as the guy
that pulls the--turns the--hits the switch when Woody Harrelson
gets his arm cut off. He's the guy--we did ``Something About
Mary''--screaming at Ben Stiller as he's helping him pack and
move into his house. He's in his wheelchair. He's saying,
``Come on, move it,'' yelling at him. The point was if we could
show people with disabilities in all different ways--you know,
we don't just show that, but if we could show them in many,
many different ways, then people will be thinking, ``Well,
they're just like me, and they're more acceptable.'' But you're
right. It is a problem, and we're trying to overcome that.
Senator Harkin. Thank you. Good for you.
Thank you for your leadership on that, Peter Farrelly.
Well, Kyler, I hardly know--first of all, Kyler, you mentioned
your swim coach. I met him earlier. Mike Loupee is here. Could
you stand?
Well, Kyler, I did not know until today about your new job.
This is news to me, so congratulations on that. It is
disturbing, however, to hear that you work but you can only
work so much because then some of the money will be taken away.
Do you know how many hours a week, Kyler, you can work now?
Do you know?
Mr. Prunty. They say 20 hours a week, but I can work more--
--
Senator Harkin. I bet.
Mr. Prunty [continuing]. Than 20 hours, but I don't really
want to lose my benefit.
Senator Harkin. Yeah. 20 hours. You're limited to that?
Mr. Prunty. Yeah.
Senator Harkin. Do you know more about that, Laurie? Does
that vary State by State or what?
Ms. Noll. No. That's across.
Senator Harkin. That's across? That's it.
Ms. Whitworth. We find that with Patrick, of course, and--
--
Senator Harkin. Say that again?
Ms. Whitworth. The same thing impacts Patrick that he can't
work as much. He's perfectly able to work a whole lot more, but
there are all these games. You have to, you know, balance this
and this. The number of experts that Patrick deals with to keep
all this stuff straight is ridiculous.
Senator Harkin. Americans with Disabilities Act provides
that employers must make reasonable accommodations. It would
seem to me that the Federal Government ought to also make
reasonable accommodations.
Ms. Whitworth. Too often, Senator, it's about the rules,
not about the person.
Senator Harkin. Kyler, we're going to work on that. We've
got to rededicate ourselves to finding--getting over this
hurdle that somehow that--because we have enough data to know
that if you get supportive services, you or people with
physical disabilities get supportive services, and work longer
that in the long run not only is your life better, it saves the
taxpayers dollars. We know that. We've got enough data to show
that. It just makes no sense what we're doing right now.
Ms. Noll. I also think that if they're able to work more
hours, you're not going to have the obesity. You're not going
to have all of those other parts that go with it, because they
are healthier and happier.
Senator Harkin. Are you keeping up your swimming?
Mr. Prunty. I'll be working on the weekend, like Saturday
and Sunday when they--on their busy time with weddings. We
have--last time we set up, like, 250 chairs for the wedding.
Senator Harkin. Well, I was going to say, you ought to be
doing something to keep--because I know you're a physical
specimen. You're in great physical shape. Putting up all that
stuff, I think you're probably keeping in pretty good physical
shape.
Laurie Noll, what can I say? Thank you very much--23 years
of being a special education teacher.
The kids are lucky to have you as a teacher. This is a
special interest of mine also is how we train more special ed
teachers and how we make sure that they have the support they
need both in the classroom with all the supportive services you
need. But I'm going to put you on the spot. I want to talk
about No Child Left Behind.
Ms. Noll. Ok.
Senator Harkin. Now, we get a lot of input, I do, from
teachers, school boards, principals about No Child Left Behind.
But when we passed this bill--I'm on record. I voted for it.
But when we passed it--I can remember sitting around a table,
the administration with us, both parties talking about getting
this passed and about the funding of it.
So one of the things that occurred to me at the time and my
staff at that time was, wait a minute, No Child Left Behind.
This means kids with disabilities. This means we're going to
have one level playing field for every kid and we're going to
have the funding for it to make sure that every kid is not left
behind. Tell me what's happened since then. Tell me about No
Child Left Behind, how you see it right now.
Ms. Noll. I think whoever made the name No Child Left
Behind had a great publicist to help them, because you cannot
vote against No Child Left Behind because you want all children
to be equal, and you want children to be with everyone else.
What I see happening in the field in this education realm
is that all of the funding is going to meet the test. Make sure
that students are able to be successful in math and in their
reading abilities. This is very difficult for the arts, the
liberal arts areas, where you need a whole well-rounded
student, and you don't have that right now. The focus is on
these academics.
Another sad part--and it goes along with the health and
being a healthy individual--what they're doing for students
that are not meeting that 40 percentile, they're taking them
out of art, P.E. They're taking the students and putting them
into an extra classroom.
So I have a child that doesn't test very well who is a
pretty bright young lady who has to sit in an extra classroom
and miss out on P.E. because she doesn't test well. So there's
a lot of things that we need to look at the No Child Left
Behind and change.
Senator Harkin. Well, I'm glad you touched on that. One of
the things that we have found, a lot of times kids with certain
disabilities may not know math. They may not know science, hard
to read. But a lot of times they're very artistic, and they can
express themselves artistically. I pay another measure of
respect to the wonderful Kennedy family for Jean Kennedy Smith,
who started the Very Special Arts Program for kids with
disabilities. To see these kids develop their artistic
abilities is wonderful. How do you measure that? How do you put
that in a test, you see?
I've asked Margaret Spelling that, the Secretary of
Education. No Child Left Behind, how do you test for the care
and concern that one child might have for another? How do you
test for her kindness and her generosity? How do you test for
artistic ability which may be very profound, yet you don't put
it on a test anywhere? It seems to me this No Child Left Behind
ought to encompass that too.
So I guess the bottom line for me is that right now when we
passed No Child Left Behind, we agreed upon a funding trail,
how much the funding would be. This year with this budget we
are now--Let's see. We passed No Child Left Behind in 2001. So
5 years. 2006 we are now $15 billion less than where we said we
were going to be. $15 billion that should have been put in has
not been put in.
Ms. Noll. Correct, correct.
Senator Harkin. So I keep saying, you know, I think No
Child Left Behind would work if, one, we got off of this
testing for just one or two things and encompassed it more in a
broader climate.
If we funded it, I mean if we paid for it like we said we
would. God knows we need special ed teachers like you all over
this country.
Ms. Noll. I can tell you that my son if he was tested on
his drumming ability would do awesome, and he received a 2.5
when he graduated. But it wasn't because of his academics. It
was because of his music and artistic ability and his love of
acting and his love of being in the theater and the stage.
Those are the things that got him his 2.5, not his reading or
his writing ability.
Senator Harkin. I have seen so many kids with various forms
of disabilities who just have so much talent in acting. I've
seen them on stages. I've seen them--Well----
Mr. Farrelly. Eddie Barbanell is actually here. He's one of
the actors in ``The Ringer.'' Eddie, could you stand up?
Senator Harkin. Where is he? He's here somewhere.
Mr. Farrelly. Eddie? Is Eddie still here? I think he left.
Senator Harkin. He was here earlier.
Mr. Farrelly. Yeah. Oh, I'm sorry. Getting your hopes up.
Senator Harkin. But I've seen a lot of--I've seen them in
school plays. We aren't nurturing that part of that ability
that these young kids have.
Ms. Noll. In my school alone, I had a group that's called
Renaissance, and I put my special education students in that
same realm with the regular ed kids. They partner up, and it's
a leadership program. So they get to do a lot of special
things. I've had my students in front of the school body. They
have sung solos in front of their whole class. They have given
speeches for their student body, and they do a great job.
They're accepted, and it's wonderful that way.
Senator Harkin. Well, that tells us what we've got to focus
on, and that's what we have to focus on.
Peggy, just one last once. I made a note here. Who funds
LinnHaven? You mentioned where Patrick lives.
Ms. Whitworth. Approximately two-thirds comes from Medicaid
funding from HCBS and one-third then from the county. I didn't
know that before I was coming here today. I had to ask. Then
they do some private fund raising as well. Patrick was just
asked--They're having an event called Bowling for Mortgages,
so--but it is primarily funded through Home and Community Based
Services.
Senator Harkin. Well, I'm going to close this down. I'm
just going to ask you, is there any last thing that you would
like to impart to me or on the record at all? I'll just go
down. Peggy?
Ms. Whitworth. I would say the thing I'm specifically
concerned with right now is after these people get through with
wonderful teachers like Laurie here, then the next step and the
transition thing. And simply making people aware, and I think
Peter's doing as much as anybody to make sure that they are.
Mr. Farrelly. Well, thank you very much. I'd also like to
quickly say, you know, in talking about the arts, when we made
``The Ringer,'' we had 10 main characters. Half of them were
intellectually different and half were ``normal actors.'' The
intellectually different actors were way more prepared every
day.
I'm telling you, I'm not being patronizing when I tell you
that we would come in--what happens when you first start to
shoot a scene is you rehearse it. You find out then that half
your actors didn't get the lines down, and you have to spend an
hour or two getting the lines down before you can shoot the
scene adequately.
I never had one problem with any of the intellectually
different actors. They were always the best. I think that, in
fact, there seems to be--that seems to be their strength. They
were ahead of the other actors in that way, and it was a great
help for the movie.
Senator Harkin. Anything else? Kyler, anything else you
want to impart to us at all before we get out of here?
Mr. Prunty. Well, thanks for asking me to be on your
hearing, and I appreciate what you're doing for Special
Olympics and for Iowa.
Senator Harkin. Well, I'm proud. We're proud of you. And
like I said, you can come lobby me anytime.
Senator Harkin. Laurie, any final thing, Laurie?
Ms. Noll. Just thank you and help teachers to get that
funding and support they need.
Ms. Whitworth. One thing everybody in this room wants to do
is to thank you for all of your leadership, and I know it's not
about you, but it's about you and the steps that you have
taken, and you're such a leader, it makes us all proud to be
from Iowa.
Senator Harkin. Thank you very much. Thank you. Thank you
very much. You're very generous and very kind. Thank you all
for being here today. Just one moment. Well, I don't want to
keep people here. I know you have other things, and the games
start this evening, and I know you're all going to be there for
that.
But it's not often that we have a field hearing like this,
and Ellen Murray just suggested to me that, well, we're pretty
much on time, which is kind of odd for us for hearings to be on
time. We usually run over a half an hour or so. But since we do
have a few more minutes, I'm just wondering--a lot of you came
a long distance. I know you're greatly interested in the
subject. And maybe you have something you'd like to impart to
us, and so I'd like to just throw an open mike here if I could.
I'll excuse the panelists. I'm just going to open the mike
only if you have a question or a statement. I don't care which,
something you want to get across.
I would only ask that you, one, say your name. If it's
Smith or Jones, fine. You don't have to spell it. But we have a
court reporter here, and she needs to know the proper spelling
of your name. So when you get the mike, say your name. If it
needs to be spelled, spell it, and then go ahead and speak.
Dr. Rader. Right. My name is Dr. Rick Rader. I'm a
physician from Chattanooga, Tennessee. I'm the editor-in-chief
of Exceptional Parent Magazine and the president-elect of the
American Academy of Developmental Medicine and Dentistry.
I hope following my remarks you will be compelled to say
two things. One, I hope that you'll say, ``I didn't know
that,'' followed by, ``How could that be?'' The Institute of
Medicine is a depository for a voluminous array of studies--
you've heard some of the epidemiological statistics this
afternoon--testing to the comorbid problems of people who are
medically underserved.
Despite the fact that the Institute of Medicine, the CDC,
the NIH, the Office of Minority Health, and the Office of
Health Disparities relates to people with developmental
disabilities and intellectual disabilities as being medically
underserved, the Federal Government has never officially
declared our population as being medically underserved.
I think that your facial expressions are starting to say,
``How could that be?'' Purser (phonetic) is the board that
declares that. And right now the only populations that qualify
for that moniker happen to be Native American Indians and some
other indigenous populations.
The beauty and the need for having our population declared
as being medically underserved would allow medical student loan
forgiveness. It would allow foreign trained physicians to get
their visas if they worked here in this particular population.
It would allow funding in research for community health
centers, and it would direct some funding mechanisms as a
result of that too. At the end of the day, I'm afraid to say
that populations that are underserved are undervalued, and we'd
like you to think about that.
Senator Harkin. Let me just ask you this, doctor. When
you're saying population, are you talking about both physically
and intellectually disabled?
Dr. Rader. I'm talking about our population, which is folks
with intellectual and developmental disabilities. But, yes,
folks with intellectual disabilities are not declared medically
underserved by the Federal Government.
Senator Harkin. Okay. Thank you. You're right. I didn't
know that.
Mr. Donnelly. J.D. Donnelly, D-O-N-N-E-L-L-Y. I'm the CEO
for Special Olympics Utah. Thirty percent of my full-time staff
are individuals with disabilities. I'm speaking to you on
behalf of being an employer. The challenges that are put on the
employer to hire a person with disabilities and trying to
manage their hours so they don't lose their benefits and the
challenges of that, make it very difficult.
So, if we want more of our individuals with disabilities to
be employed, we've got to eliminate those barriers for the
employer and make a positive experience both from the
Government paperwork side and management of that as it is from
the benefit of having somebody with a disability on your staff.
So, I encourage you to try to eliminate some of those barriers.
Thank you.
Senator Harkin. Thank you very much. We'll just go back and
forth.
Mr. Seidman. Good afternoon, Senator. I'm Michael Seidman,
and I currently teach law at Harvard. I'm friends with Peter
Blanks, who sends you his regards. Senator, I just wanted to
emphasize earlier remarks about the lack of coordination for
programs involving individuals with disabilities across the
Federal Government. One example that we heard was the lack of
ability for individuals with disabilities to work without
losing their health care benefits and endangering their lives
in some respects.
Another one has to do with the ADA, for which we're all
very grateful to you. But 16 years later we have yet to see a
job program, although Senator Dole did valiantly try to do that
in 1993 and 1994. He lost that effort. We saw the welfare
reform efforts, but we did not see job programs with
individuals for disabilities.
To make the point even more graphically, with the recent
hurricanes of Rita and Katrina, in the December previous to the
hurricanes, there was a national action plan passed by FEMA,
and the word ``disability'' or ``disabled'' does not appear in
that very large document.
Some 6 months before the hurricanes, the President passed
an executive order requiring all agencies involved with
disaster relief to take account of persons with disabilities.
But that program was not initiated either. Now almost a year
after the hurricanes and with the hurricane season again
rising, trailers that FEMA had issued are not accessible.
Individuals with disabilities after the relief were not put
into accessible shelters. They did not receive medical
assistance, and we can go on and on, and I can give you many
more examples.
But it seems to me that at the heart of it is that the
Federal Government lacks a holistic approach towards
disabilities. Even now with an interagency council that's
supposed to address the needs of individuals with disabilities,
there seems to be an awful lot of waste and lack of attention
and understanding that disabled people are people who are
involved in all aspects of society and a lack of understanding
of how to engage with them as a whole person. I don't have the
answer to that. I just reflect my colleague Dr. Rader's point
that I hope you respond, ``Gosh, I didn't know that, and what
can we do?'' Again, thank you so much for your efforts.
Senator Harkin. Thank you very much. I just--you're right.
We found out after Katrina some really terrible information,
and we had some hearings on it where people with disabilities--
people actually brought seeing eye dogs--had to leave their
dogs and get on a bus or something like that. People who had
lived independently before, were thrown in an institution. Just
one thing after another. Trailers that were provided, as you
said, were totally inaccessible.
So we've introduced some legislation, S. 2124 if you're
writing things down, to address that. We also added an
amendment for the Homeland Security bill coming through to set
up one person in that whole Homeland Security thing whose only
responsibility is to--is to be a resource for people with
disabilities in case of any natural disasters and things like
that.
They don't have that person right now. We want to get one
person who's a go-to person, you know. If you're preparing for
a disaster, what do we need to address this population of
people with so you have that person to go to? Or if there is a
disaster, what do we need to do so we've got one person who's
in charge of that? Hopefully we'll get that done by the end of
the year.
The other thing is, I hope we can make the changes in these
things so in case of disasters we have plans in place to
address the needs of people who are either physically or
intellectually disabled. Thank you. Back here.
Mr. McDonald. Hello. I'm Steve McDonald from Dubuque, and I
have a 23-year-old daughter with multiple disabilities. Special
Olympics has meant a great deal to my daughter and to our
family in many, many ways. One struggle we have had is through
the educational and governmental system and the roadblocks that
have been constantly put in my daughter's way as she tries to
succeed. Special Olympics never says to an athlete, ``You can't
do that.'' They say, ``Let us find out a way.''
For example, at the summer games a few years ago, there was
a sight-impaired athlete who wanted to run a particularly long
race. They got dozens and dozens of volunteers who encircled
the entire track. They held a rope, and they put a ring on the
track. As she ran, the volunteer would let go of the rope, and
she was able to complete that entire race. Those of you who
were here for those Summer Games might remember that event. It
was really fantastic.
Special Olympics didn't say to her, ``It's impossible. You
can't do that.'' Yet the Government is constantly saying to my
daughter and the educational system has said many times in the
past, ``We can't do that. It's impossible.'' What can you do to
help change the Government and the educational system to look
at my daughter and say, ``Yes. You can do that?''
Senator Harkin. I think what we said in terms of No Child
Left Behind and everything is to make sure that it applies to
all kids, that we tell kids with disabilities that they can do
that. And then they're going to have the education and the
teachers and the supportive services to do that. I mean it is a
disgrace.
It's a national disgrace how little we spend of our
resources in this area and how we still have this mentality of,
well, we'll take care of them some way or another, usually
through some institutional means or something like that, which
is degrading and depressing and which really limits the
horizons of people with disabilities. I take your point well.
We just need to do more of this on the Federal level, and we
need the funding there for it too.
I should have mentioned this earlier. We are in the
district of State Representative Lisa Heddens. She represents
the Ames area, is on numerous State boards for intellectual
disabilities, works for Parent Training and Information Center,
and is the parent of Paul, age 9, with Down syndrome.
Representative Heddens. Thank you, Senator. I just wanted
to make a few comments. I appreciate the opportunity for you to
have held the hearing today. I think it's very, very important
for people to hear some of the challenges for people with
disabilities.
One of the things I just wanted to say in regards to my
son, Paul, you know, being thrown into this whole new realm of
special education and Medicaid is really what drove me to run
for office. It's because I found how bureaucratic it was and
confusing, and I thought, here I'm a pretty intellectual woman,
and I can't figure it out. I'm struggling through it. How can
everyone else do it?
So, I give great credit to my son for pushing me to be in
office. One of the questions I had is, how can we continue to
pursue funding? I know we've talked about that a lot today. But
in particular, funding the special education funding. You know,
it was promised about 25 years ago that it would be at 40
percent. It is now at, what, 17 percent?
Senator Harkin. Going down?
Representative Heddens. Going down. We're not asking 100
percent, although I'd like 100 percent. You know, where--
``what's the stall?,'' is one of my questions. You know, what
else do we need to do to lobby that? As a legislator, I find it
very hard to work within our State to have adequate funding for
education. It's a continuing struggle to make sure we have
dollars for, you know, birth to 3, for that K through 12 level,
and then for our students that are going into post secondary.
We also have struggles with our Medicaid system. I look at
Medicaid that's being cut federally, and how are the States to
match those dollars or to make up any loss of dollars? My fear
is what Iowa will do is will either cut services or change
eligibility criteria. I don't want that for my son, and I would
assume everyone else would not want that as well.
So I guess I look to you not only as a parent but as our
Federal counterpart is I'd like to continue ways to work
together, because this is an important area. I do appreciate
all the work that you have done. You have been a leader and a
champion in this area, and I just want to thank you again for
holding this important hearing today.
Senator Harkin. Lisa, thank you. Thanks for letting us meet
in your district today. I appreciate it very much.
For those of you who may not know, what Representative
Heddens was just talking about was that when the Congress
passed the Individuals with Disabilities Education Act--let's
see, that's been about 36, 38--1971--31 years ago. Thank you.
31 years ago. We said in passing that, that our goal was that
the Federal Government would provide up to 40 percent of the
additional cost of educating kids with special needs.
Thirty-one years later we're at about 17 percent and going
the other way. The high, I think, was, like, 18 to 19 percent.
I think we're going the other way now. Again, it's just--that's
not right. I mean the Federal Government should have been at 40
percent a long time ago, and we should have been at 40 percent
now. It's just unconscionable that we've never gotten that.
Yes.
Ms. Peterson. Good afternoon, Senator Harkin. It's Mia. Hi.
It's Mia Peterson, and I am a self-advocate. I've got to come
up. Today, I just wanted to share with you about my
independence and failures with transportation. It's been a long
time. Eight years ago I made a big move from Iowa to
Cincinnati, Ohio, and not because I had to, but I had a lot to
learn about living on my own, independently, and I was included
to work on a newsletter in Cincinnati, Ohio.
My family supported me because they wanted me to have this
chance to live my own life and my sisters. I'm glad that they
did. It was worth the risk. It was the beginning of my self-
determination. Trust me. I am working on it. In Cincinnati
things started changing, and I felt I needed to move on.
New things were happening in Iowa, so I wanted to move
back. I wanted to be closer to my family and my other friends
here in Iowa. Now I am back in Iowa living in Des Moines. I am
glad to be working for Iowa Protection and Advocacy Services,
and I'm full-time now, working 40 hours. I just want to say
that.
Ms. Peterson. I have experienced failure with my job. I
have trouble with transportation. There was not a bus that goes
close to my office, so I had to find another way to get to
work. I finally got services from Parent Transit. I know that
other people with disabilities have trouble with transportation
too. If we are going to have a chance to work in our
communities, we need transportation that works for us. Senator,
there is no place like home. Thank you.
Senator Harkin. I didn't recognize--I can't see from here
very well. That's Mia; right? How are you? It's great to see
you. Welcome back home. My gosh, yes. I've known Mia for a long
time now. Thank you, Mia Peterson.
Ms. Satterfield. My name is Deborah Satterfield, and I'm
from Ames, Iowa, and I'm the parent of an 8-year-old boy who, 8
weeks ago, went through a very serious brain surgery, and he's
on the brain injury waiver. What I observed as a parent is that
we have some very serious problems in this country with
nationwide malpractice insurance. Because of my son's brain
situation, he was having about 700 seizures a day, and he could
not be served by physicians locally, although I was referred to
two very, very skilled neurologists and optologists in a
neighboring State.
A few months prior my son's surgery, my neurologist sent me
a letter saying that he was going to be possibly losing his
malpractice insurance, not because he was incompetent, not
because he had been sued, but because too many of his patients
came from other States and his insurer was uncomfortable with
that, and they were high-risk patients because of his specialty
in epilepsy and autism.
That day I had to face the reality that my son could die if
my physician lost his insurance. That was the most traumatic
day I've ever lived through, Senator Harkin. I didn't realize
in the United States of America that we didn't have the right
to drive across a State line to get the right medical help.
I want to ask if somebody here--you know, when we find
these physicians that are trained to work with our population,
we have to support them. This isn't about protecting doctors
who are negligent. This is about protecting patients.
I'm pleased to say that my son received the surgery because
my doctor's insurance didn't fall through, thank God. He's now
a happy little boy. But he did suffer from some of the medical
issues. I'm very aware of the medical problems. At one point
after his brain surgery, the nurses didn't want to give him
pain medication because he can't talk, and he uses signed
English, and he was crying and signing for pain medicine, and
he couldn't get it.
So, I think when we get our skilled physicians, we've got
to support them so that they can save the lives of these very,
very important individuals in our society. I thank you for this
hearing.
Senator Harkin. How is your son now? How is he doing?
Ms. Satterfield. Oh, he's doing fabulous, Senator. He's
bright-eyed. He's learning more signs every day. He's a
blessing. I am so blessed.
Senator Harkin. Oh, that's wonderful.
Ms. Satterfield. Thank you.
Senator Harkin. Back over here.
Dr. Holder. Hello, Senator. My name is Dr. Matthew Holder.
I am a physician. I also serve as the Global Medical Advisor
for Special Olympics, but I don't think I need to represent
Special Olympics here. I also serve as the executive director
of the American Academy of Developmental Medicine and
Dentistry, which is a national association of a few hundred
physicians and dentists who are not only dedicated to serving
people with intellectual disabilities, but also have the
expertise to train others and other physicians to serve this
population as well. So, I would like to pledge our help in the
training piece of training our Nation's physicians and dentists
to care for this population.
Senator Harkin. I would just ask you, doctor, I just need
advice. I mean I just need some guidance on maybe what we ought
to be doing or what we could do to help in that endeavor from
the Federal Government. I just need some advice. Not here, but
you know how to get ahold of me.
Dr. Holder. I'll come to your office.
Senator Harkin. All right.
Dr. Holder. Thank you. I also operate a clinic in
Louisville, Kentucky, which is one of the Nation's few clinics
that devotes its time specifically and only to caring for
people with intellectual disabilities. I'm both happy and sad
to say that our patients will drive sometimes 220 miles each
direction to come to our clinic. Now, I'm happy because that
means we're doing a good job. I'm sad because that means that
they are passing a number of physicians and dentists along the
way who aren't willing to take care of them.
One thing I'd like to point out is that a lot of our
patients are adults. There are a lot of services out there for
children with disabilities. But once those children grow up and
they become 21, 22, 25, 40, 50 years old, those services drop
off.
I have seen a few sad stories, and I'm just going to share
two very short ones. One was a person who died because of
complications that started because of tooth decay, and the
neglect that happened for so long was that they--one event
after another led to their death. The reason why was because
our system just is not set to handle older people with
intellectual disabilities. So that's my statement. Thank you.
Senator Harkin. Thank you, doctor. Time is running out.
We've got quite a few more people. Again, if you could keep it
short, I'd sure appreciate it. I'd hate to cut anybody off. Go
ahead.
Ms. McKinney. I'm Elsie McKinney (phonetic). I'm from
Maryland, from Frederick. I was listening to the concern about
medical education on addressing the needs of intellectually
disabled people. I want to tell you about a wonderful program
practically right under your nose on the campus of the National
Naval Medical Center Uniformed Services University, which
trains our physicians for the military and public health
service.
There's a wonderful program through the Department of
Pediatrics that is called Family Advocacy Program. They begin
the first day of medical school by integrating into the medical
education and seminars and classrooms and home visits the
opportunity--the requirement that all of their students are
exposed to these needs.
They interact with real-life intellectually disabled people
and their families. They come out to your house. They have to
go home and write a paper the next day. They relate to the
kids, and my daughter Emily, who's here as an athlete, has been
one of, I guess, their guinea pigs. She's been the model for
how to do a pediatric interview.
Anyway so there are some things out there that are
happening. From the first day of medical school when it's
introduced to them, they're told this is a one-of-a-kind
program in the world, and I just hope that the word gets out.
Unfortunately, it's not publicly funded. It's funded by private
enterprising and grants. But it's wonderful. I mean the
students come out to our house. They meet Emily. They talk to
her. She tells them about her problems. It's remarkable.
Senator Harkin. Thank you. Doctor, do either one of you
know about this?
Dr. Novello. We have it in New York. I'm glad that they are
doing this in Maryland, but I hate to hurt your feelings. We
are doing it in New York too. We have 12 programs where I
believe it's extremely important that people learn what
disabled are, so we're making that as part of the curriculum of
the school.
So we go to the houses. We go to wherever they go, and we
train in getting it where the people are. But it wasn't easy,
but it's a peaceability project, and we have 12 programs. I
think it would be great if this would be across the United
States. One was in your package, Senator.
Senator Harkin. My time really is running out. I'll take a
couple more. Then we're going to have to cut off. Yes. Go
ahead.
Ms. Anderson. This is very brief. My name is Lisa Anderson
from Ames. I wonder if anyone would vote down a compassion tax,
compassion tax. To raise money for funding to have a tax, call
it a compassion tax. But my question is if it is on the radar
of anyone in Washington that 1 out of 166 children is now born
with autism.
Senator Harkin. I'm trying to understand something. I can't
hear that well. You're saying something like a compassion tax?
I don't understand.
Ms. Anderson. My question really is about the statistics
for autistic children that are being born.
Senator Harkin. Yes.
Ms. Anderson. If that's on the radar of Congress that 1 out
of 166 children is now being born with autism. It's an
epidemic.
Senator Harkin. Oh, I see. Okay. I will answer thusly. This
committee does have jurisdiction over the National Institutes
of Health. I know that there's more and more research being
done into this as to why this is happening. I don't know that
we have any expert diagnosis or not.
I don't know if Dr. Gerberding is--the question was more
and more kids seem to be diagnosed with autism and more and
more kids are being born and diagnosed with autism, and we've
asked NIH. I don't know. Maybe this is outside of your
jurisdiction, but we've asked NIH to start looking at this and
why, what's happening. I just want to know if you had any
observations on that.
Dr. Gerberding. I would never correct you, Senator, but you
actually asked CDC to look into it.
Senator Harkin. Oh, I asked CDC. I knew I asked somebody. I
just didn't know who. I stand corrected. We asked CDC to look
into it. So I have the expert person here to answer that
question.
Dr. Gerberding. Actually I have the expert. Dr. Cordero is
the leader of the center that's responsible for this. But we
are very interested and worried and concerned about the
prevalence of autism. In Atlanta, in Georgia we have a very
sophisticated study to try to understand what is happening with
the trends in autism and, more importantly, we hope, why, why
is this happening and what can be done about it.
But as you know, it's been very difficult because in many
States we're not allowed to get the information that we need to
understand the problem. We're also doing something that the
Senator has helped us with, which is our campaign about learn
the signs and acting early, and what we're discovering is that
when parents know what the developmental milestones are and,
more importantly, when their pediatricians or their family
doctors know what the developmental milestones are, we can make
that diagnosis earlier, and that's a wonderful thing, because
people can get help earlier.
But it also changes the statistics, because we're finding
more people. We're finding them earlier. So it's scientifically
right now a little bit difficult for us to say 100 percent
what's happening. What I say is whatever is happening to the
trend, there are too many children with this problem, and we
need to understand why.
Senator Harkin. Very good. Thanks, Dr. Gerberding. Yes.
Over here.
Dr. Fray. I'm Dr. David Fray, F-R-A-Y. I'm the Chief of
Developmental Disabilities for the state of Hawaii, and I'm
also a dentist. There are a couple issues that I think are very
important for our families. One is that the maze of Federal
programs and regulations is confusing and difficult. People end
up with different challenges, but they're unable to meet those
challenges because they don't have direct control over how
money is spent. I think it's very frustrating.
There's also the portability issues. When families move
from Hawaii, we don't keep wait lists, but when they go to
other States, they're put on a wait list, and they could wait
years for home- and community-based services. I think that
could be addressed federally.
On the issue of oral health, dentists are wanting to learn
how to treat patients with developmental disabilities, but
dental schools do not give any emphasis. So dentists come out
of dental school untrained and feeling very, very vulnerable
and refuse treatment to people with intellectual disability. I
think that can be changed. I think you can do it.
I've got two dental students standing next to me that have
confirmed this. They're not being trained to treat people with
intellectual disabilities. I think it's unconscionable. I also
believe that the myth is that dental is too expensive. You
wouldn't purchase medical insurance if it didn't cover eyes,
ears, feet, kidneys. Yet we do that with dental, and I think
that also should be addressed. Thank you very much.
Senator Harkin. Thank you, doctor. One more.
Audience Member. I am a future teacher in special education
going to Iowa State University. Having read about No Child Left
Behind, it is a fantastic bill if it were not so into test,
test, test. We have children in schools that literally cannot
keep up because of their intellectual capabilities. It has been
shoved into these children's minds that if you do not pass a
test, you're stupid, you're dumb, and you're not worth the
effort.
We need to change the attitudes, and that can only come
from seeing results to--you know, seeing a difference in these
children's lives. There are children out there that live out on
the street on their own, and I could give you name after name
after name, and it's sickening. Please, please get us the
funding.
Senator Harkin. Thank you. Yes.
Mr. Loupee. Senator Harkin, my name is Mike Loupee, L-O-U-
P-E-E. I teach chemistry at Marshalltown High School, and I'm
Kyler's swim coach. Kyler--I wanted to clarify one thing when
Kyler talked to you. He competed in the varsity swimming
program. He swam over 250 miles every season. He swam in a lane
next to All-American swimmers and did everything they did.
Mr. Loupee. Kyler, stand up a second. Stand up. Kyler, pull
your coat back. Unbutton and pull your coat back. Show
everybody how skinny you are. When Kyler came as a freshman, he
weighed over 230 pounds. He's now 190, I believe.
Mr. Loupee. He lost the weight, kept it off, and he did
something that's very rare. He actually listened to his coach.
When I told him that he needed to make a lifestyle change,
watch what he ate, continue to exercise, and he's done those
very things. That was one thing I wanted to say.
The other thing I wanted to make an important point of is
in his years on a, ``regular swim team'', Kyler made better men
of all of us. What Special Olympics does for those individuals
is outstanding, but the way that those people touch our lives
is something that we need to do for all of our sakes, not just
for our intellectually challenged individuals. Then we'll
finish it up with my wife, who has been with Kyler also, has
one more statement.
Ms. Nelson-Loupee. I'm Rachel Nelson-Loupee, hyphenated. I
just wanted to say the Special Olympics is a wonderful thing.
We've heard a lot of negative things about special ed and
things like that. You need to be proud of yourselves for what
you do for your kids, especially Kyler's parents. You guys do
an awesome, awesome, awesome job, and I applaud you all,
because I don't know if I could, but I hope I could. So thank
you very much.
Senator Harkin. Okay. There's just a couple left. I'm not
going to cut anybody off, for crying out loud. Go ahead.
Ms. Cole. My name is June Cole (phonetic) from Albuquerque,
New Mexico. I am a school teacher, teach elementary school. My
husband is here with me. He's a retired Marine Corps officer.
He currently works for Southwest Airlines. The reason I
mentioned that is we're two semi-intelligent people, and yet
the system is horribly, horribly difficult to deal with.
We've recently been approved for SSI. Our daughter is 21.
We got the SSI from Social Security primarily for Medicaid.
Social Security said, ``We don't know if you're qualified for
Medicaid. Go ask Medicaid.'' We asked Medicaid. They said,
``Why are you here? That's a Social Security issue.'' So we
march between those two government offices, and I'm thinking,
``Why can I not understand this?''
But last I want to state long term--our daughter's 21. She
has no employment, no housing. She's at home with us, and we
don't see any options out there. So I appreciate any and
everything that everyone does to help us. Thank you very much.
Senator Harkin. Thank you.
Dr. Berman. Thank you, Senator Harkin. I'm Dr. Paul Berman.
I am the founding and global physical director of Special
Olympics--Lions Club International Opening Eyes. My question is
this. We have over tens of thousands of volunteers who have
volunteered to help the athletes all over the United States and
all over the world. One of the barriers seems to be
malpractice. A lot of senior doctors who are no longer
practicing can't volunteer for our program because they don't
have malpractice.
A lot of doctors are very reluctant to practice when they
have to go through State lines, and they're not sure if their
malpractice covers them. Is there any thought by the Federal
Government to have doctors who want to volunteer for
philanthropic activities for their malpractice to be covered or
for that issue so we can get more retired or people who want to
do things and not do things just because they don't have
malpractice insurance?
Senator Harkin. Well, I don't know the answer to that
question, and I don't know the extent of that. I'm going to ask
Tim Shriver if there's any--I don't mean kick the ball down the
field or anything, Tim. I just want to know, is this something
that maybe we ought to look at?
Mr. Shriver. We have had some issues with Steve--I'll kick
it over to Steve Corbin.
Mr. Corbin. Is there anybody here that can catch? I'll
kick.
Mr. Shriver. Steven Corbin is the local director of Health
Athletes. We have had some issues with clinical protocols and
certification issues with practitioners.
Mr. Corbin. Well, the first issue is when we get volunteers
from outside of State, even if they do have their malpractice,
we do have to deal with the boards and the States allowing our
people to volunteer, and we saw that here in Iowa.
But there are literally tens to hundreds of thousands of
retired health care providers that could provide this care for
free if there was a way of creating a malpractice pool. It
would probably be ultra low risk. This would do a lot to create
public service, giving back to communities, and really having
an impact, I believe.
Senator Harkin. So the thought would be some kind of a
medical malpractice pool----
Mr. Corbin. Yeah.
Senator Harkin [continuing]. For those who want to
volunteer their services in cases like this. I don't know how
we'd define it, but there would have to be some definitional
frame for it.
Mr. Corbin. Right. I think some States have done this for
volunteer programs within their States on a limited basis.
Senator Harkin. Do you know of that? Dr. Novello seems to
know something.
Dr. Novello. During September 11 we have the same problem.
People from Connecticut and New Jersey wanted to come help in
New York, and they were afraid. So we have under the Good
Samaritan Rule you're able to amend the malpractice law to be
able to cover them and except them from any damages as long as
they're doing jobs in good faith. So maybe you can do that for
the whole country when we're going to need to have this.
Senator Harkin. Is this just a law in New York you mean?
Dr. Novello. Anytime that there is a crisis or something,
it would be good for the country to have something that allows
people to----
Senator Harkin. You say you have a Good Samaritan law like
that?
Dr. Novello. We did that during September 11. Now we are
just seeing what is going to happen during the next crisis, but
at that time it worked.
Senator Harkin. Well, maybe we could look at the New York
law at what you did.
Dr. Novello. You're always welcome to come to New York when
you want good things to happen.
Senator Harkin. Maybe we could pick up on that and find out
if there's something there that we would look at. But that's a
good question, and it's obviously a problem and something that
needs to be addressed.
Well, thank you all very much. I thank all of our
panelists, and many of you have come a long distance. Again in
closing, let me just, again, thank Tim Shriver, our CEO to the
Special Olympics, and your whole family for all that you've
done to bring us this far and for bringing the games to Iowa.
Thank all of you for being here. Wonderful testimony.
I want to assure you that my staff and Lee Perselay, who
his only job on my staff is disability issues--that's his
charge--and Ellen Murray who runs our Appropriations Committee
and Adrienne Hallett who was here with us also, they've been
taking all this down. Believe me, we're going to focus on a lot
of these issues when we come back.
STATEMENTS RECEIVED FOR THE RECORD
We have received several written statements that will be
made part of the hearing record.
[The statements follow:]
Prepared Statement of the American Academy of Developmental Medicine
and Dentistry
INTRODUCTION
Senator Harkin, you have heard from our distinguished panelists
about many of the challenges that face people with intellectual
disabilities. You have heard Dr. Shriver, Dr. Novello, Dr. Gerberding
and others discuss, in particular, the health issues that face people
with intellectual disabilities. Thank you, for the opportunity to add
my voice and the voices of the practicing physicians and dentists from
across the nation whom I represent, to the voices of the experts to
whom you have listened today.
As you close these proceedings and contemplate the actions that
will be taken by you and your colleagues, I ask you to think of the
following words that were first recorded in ancient Greece but are near
to the hearts of every American citizen, especially to those in my home
State of the Commonwealth of Kentucky, which adopted the following
words as the State Motto--``United we stand, Divided we fall.''
These words have been used throughout history to give us strength
in times of perilous uncertainty. These words have been used to remind
us in such times, that the success of a nation, of a people and of a
society is dependent upon us never seeing fit to abandon our brethren.
For those who live by that code, there is no greater dishonor, no
greater danger to the fabric that binds us all, than to willingly--or
even inadvertently--allow any of those who are united with us to fall.
Senator Harkin, for people with intellectual disabilities, this is
a time of perilous uncertainty. This is a time in which families,
advocates and governments are divided. This is a time in which we, as a
people, are undergoing the greatest test of our honor and civility--the
protection of one is the protection of all, and the failing of one is
the failing of all.
For decades, we have sought to improve the community services that
support the ability of people with intellectual disabilities to thrive.
We have focused on the rights of people with intellectual disabilities
to have a choice--a choice of living environments, a choice of
educational options, a choice of being employed. In our efforts to
expand the choices for people with intellectual disabilities, however,
we have neglected perhaps the most important choice of all--the choice
of good health. For most people with intellectual disabilities, there
are no choices for quality health services.
As I have heard Dr. Shriver state on many occasions, most people
think that people with intellectual disabilities receive better
healthcare than the rest of the population. Unfortunately, this could
not be further from the truth.
So ignorant are we of the health disparities that exist for people
with intellectual disabilities, that in 2004--2 years after the most
definitive report in the history of the United States detailing the
health disparities experienced by this population was published by
Surgeon General David Satcher--a research proposal submitted by a
physician to the NIH Office of Minority Health and Health Disparities
was summarily rejected because the subject of the research, people with
intellectual disabilities, had not been declared as a medically
underserved population, and, as such, were not experiencing health
disparities.
So ignorant are we of the health disparities that exist for people
with intellectual disabilities, that though it has been over 25 years
since HRSA devised the formula that determines if a group of people is
``medically underserved,'' this formula has still not been applied to
people with intellectual disabilities--despite the fact that infant
mortality rates are the highest in the nation for people with
intellectual disabilities, despite the fact that only 10 percent of
this population will live past the age of 65, despite the fact that
nearly one-third of this population lives in poverty and despite the
fact that only 2 percent of primary care physicians who treat adults
have had more than one hour of training in medical school and one hour
of training in residency regarding the care of people with intellectual
disabilities.
So ignorant are we of the health disparities that exist for people
with intellectual disabilities, that most of the state Medicaid waiver
programs designed to support people with intellectual disabilities
living in the community, do not contain any provisions for community
medical services! The irony, of course, is that the name Medicaid, is
derived from the term ``Medical Aid.''
So ignorant are we of the health disparities that exist for people
with intellectual disabilities that we have inadvertently turned our
system of health care into systemized health neglect.
Our systemized healthcare neglect of this population has led us to
a place where we accept, as a society, in ignorance of reality, that
many people with intellectual disabilities will die unnecessarily
because of medical conditions that have gone untreated for so long that
they fester, spread and ultimately claim the life of the individual. I
have personally been witness to, or know of professionals who have been
witness to individuals dying due to complications from things as simple
as tooth decay and constipation. Do you know how long it takes for
tooth decay to claim a life? A very, very long time.
What are our solutions to these problems? They are as irresponsible
as they are ineffective and expensive.
Constipation can be cured with a laxative at a cost of about a
dollar. Constipation that is neglected for such a period of time that
it leads to bowel rupture and peritonitis, will result in emergency
room utilization, surgery, intensive care and possibly death at a cost
nearing fifty thousand dollars.
Tooth decay can be treated for around two hundred dollars and
prevented for nearly nothing. Tooth decay that is neglected for such a
period of time that it results in painful dental abscesses which, in
turn, result in behavior changes mismanaged by powerfully obtunding
medications for behavior control have led to pneumonia, emergency room
visits, intensive care and death at a cost of nearly thirty thousand
dollars.
I have encountered both of these scenarios and other similar
scenarios in just the last 2 years as Executive Director of the
American Academy of Developmental Medicine and Dentistry. These two
stories, and the many others that I have heard like them, illustrate
just how poorly our health care system is addressing the needs of
people with intellectual disabilities.
Senator Harkin, I am here as a representative of three
organizations: The American Academy of Developmental Medicine and
Dentistry, the nation's only organization of physicians and dentists
dedicated to improving the quality of healthcare for people with
intellectual disabilities; the American Board of Developmental
Medicine, a newly formed organization which, like other medical boards,
will test and certify the expertise of physicians in the care of people
with neurodevelopmental disorders and intellectual disabilities; and,
the Underwood and Lee Health Services Center which is currently being
expanded, under the leadership of Governor Fletcher and Secretary of
Health Birdwhistell, to become the nation's only multidisciplinary
clinic which not only provides medical, dental and behavioral services
to people with intellectual disabilities living in the community, but
also performs clinical research to continually improve services and
teaches young doctors how to provide these services. Aside from my
responsibilities with these three organizations I have served as an
advisor to the President's Committee for People with Intellectual
Disabilities, the Surgeon General's Call to Action for People with
Disabilities and to numerous state governments and international
agencies dedicated to improving the lives of people with intellectual
disabilities.
My colleagues and I have traveled the country and the world
speaking with physicians, dentists, nurses, optometrists, podiatrists,
audiologists, physical therapists, speech therapists, nutritionists,
occupational therapists, direct support professionals and other health
professionals. We have spoken with people with intellectual
disabilities and their families, advocacy groups from all political
persuasions and government officials at all levels and in all branches
of government. Based on our collective experience as healthcare
providers, health educators, health legislators and health advocates,
we offer the following advice to consider as you and your colleagues
endeavor to provide the nation with the leadership necessary to
equalize the disparities that exist:
(1) Health Professional Education.--In order for educational
efforts to be successful, professional schools must see the value in
providing such education. The federal government has considerable
influence in the requirements that must be fulfilled in order for
schools to receive funding. These requirements should include not only
didactic teaching, but also clinical experience in caring for children
and adults with intellectual disabilities. Unfortunately, most
professional schools do not have access to the knowledge necessary to
create sound didactic and clinic curricula in this subject area.
Therefore, an effort should be made to partner with academic groups
such as the American Academy of Developmental Medicine and Dentistry,
the American Academy of Family Physicians and Special Olympics
University in order to develop a standard curriculum which can be
distributed to the various schools.
Additionally, other professional organizations in other fields,
such as the Developmental Disabilities Nurses Association and the
National Alliance of Direct Support Professionals should be partnered
with to create the standard curricula in their respective fields.
Finally, continuing medical education efforts that utilize low
cost, high quality internet-based seminars, such as those being
pioneered by Vemics and Exceptional Parent Magazine should be examined
as a way of distributing the knowledge of the relatively few health
professionals with expertise in this field to the many primary care
providers and other health professionals it will take to meet the needs
of this population.
(2) Medicaid Reimbursement.--For most providers, Medicaid is a
losing proposition. In most cases, providers lose money every time they
treat a Medicaid patient. In many cases, they lose money faster by
treating a Medicaid patient than if they treated no patient at all.
This particularly hurts people with intellectual disabilities, 70
percent of whom are on Medicaid, and many of whom require more time and
expertise than the average Medicaid patient. Waiver reimbursements must
be increased to a level that are not financially penalizing to
physicians, dentists and other providers. Additionally, other Medicaid
streams must be made available for centers whose sole mission is the
provision of health services to people with intellectual disabilities.
(3) Service Delivery.--While it is true that with a relatively
small amount of training, many primary care providers could provide
services to many people with intellectual disabilities, there is a
large segment of people with intellectual disabilities who would be
better benefited by the expertise of a doctor whose specialty is in the
care of people with intellectual disabilities. As such, model programs
such as the Underwood and Lee Health Services Center, which can serve
as a community center of health expertise, should be replicated across
the country to not only provide medical and dental services to the more
medically complex patients with intellectual disabilities but to also
teach other doctors how to care for these patients as well.
(4) Health Promotion and Prevention.--There are very few universal
truths in medicine; however, this is one: It is always more cost
efficient and better for an individual's quality of life to prevent
disease from occurring than to treat disease after it has occurred.
With the alarming rates of obesity, periodontal disease and other
preventable diseases in this population, effective methods of health
promotion must be developed and widely implemented. These programs may
range from producing health promotion literature and experiences, to
providing individuals, families, groups homes and intermediate care
facilities with financial incentive to eliminate these and other
preventable diseases.
(5) Research.--Meaningful, clinically relevant research must
continually be funded and propagated. While myriad psychosocial studies
have been performed to enhance communication and provider sensitivity,
relatively few studies have been performed that give providers the
biomedically sound tools to treat the conditions associated with the
thousands of recognized causes of intellectual disabilities.
(6) Education Loan Forgiveness.--Many physicians and dentists are
willing to work with underserved populations if they can afford to do
so. However, with the high price of medical and dental education,
doctors who graduate from school are often saddled with student loan
debts of between $100,000 and $300,000. The financial reality of this
debt discourages doctors from providing care to patients who can only
provide marginal payment for services. Reducing debt load would free up
doctors from their own financial barriers to providing care to this
population. Such a loan forgiveness program should be extended to
physicians, dentists and other indebted health professionals who devote
a large percentage of their professional careers, either in service or
research, to providing care for people with intellectual disabilities
(7) Medically Underserved Population Designation.--Congress should
declare, definitively, that people with neurodevelopmental disorders
and intellectual disabilities are a ``Medically Underserved
Population.'' Programs are currently in place that provide education
loan forgiveness and research grants to professionals working with
``Medically Underserved Populations.'' When this is declaration is
made, it should be made for the entire population of people with
neurodevelopmental disorders and intellectual disabilities and not just
for certain geographical areas, which has been the traditional
(although not mandated) method by which underserved populations have
been defined.
(8) Focus on the Lifespan.--Children with intellectual disabilities
grow to become adults with intellectual disabilities. There are
literally hundreds of organizations that focus on the well-being of
children with disabilities. This work is very important, but it is a
disservice to both these organizations and to the individuals they
serve to discontinue programs for people with intellectual disabilities
simply because the patients attain the age of eighteen. It is both poor
health practice and poor public policy to continue a system that
provides ample opportunity for health maintenance until a certain age,
only to see all of the progress made in that time obliterated within a
few short years by systemized health neglect.
Senator Harkin, in closing, I would like to sincerely thank you for
taking the time to listen to those of us whose passion is improving the
lives of people with intellectual disabilities. I would like to thank
you for you vision, for your leadership and most of all for giving us a
reason to stand here today, united with our fellow American citizens
with intellectual disabilities.
______
Prepared Statement of the American Association on Mental Retardation
The mission of the American Association on Mental Retardation
(AAMR) is to promote progressive policies, sound research, effective
practices, and universal human rights for people with intellectual and
developmental disabilities. The AAMR has been the leading professional
organization focusing on the welfare and needs of persons with
intellectual and developmental disabilities in this country for the
past 130 years. This organization is recognized world-wide for its
contributions to the field, most notably for its classification manual,
Mental Retardation: Definition, Classification, and Systems of
Supports, now in its 10th edition. The next edition will be altered to
reflect intellectual and developmental disabilities as a more
appropriate term. Additional areas of expertise for this organization
are the development and dissemination of the supports paradigm that
recognizes an individual's unique personal strengths and identifies
needed supports, with a focus on health. The AAMR recognizes that good
health includes physical, emotional, spiritual and environmental well-
being. Recent efforts to address the health care needs of persons with
intellectual and developmental disabilities and the effects of the
environment on this population are noteworthy.
Senator Tom Harkin has long supported efforts to improve the health
of Americans by authoring and supporting legislation that would promote
healthy living, especially through prevention measures. In this
hearing, he is focusing on a group of Americans with intellectual and
developmental disabilities that has long been disenfranchised and often
not considered when disparities in health care are discussed. The AAMR
supports Senator Harkin's efforts to promote adequate, accessible, and
appropriate health care for persons with intellectual and developmental
disabilities.
In 2005, AAMR published Health Promotion for Persons with
Intellectual and Developmental Disabilities. This groundbreaking book,
an outcome of a national conference supported by the Centers for
Disease and Prevention, Special Olympics, and the Agency for Healthcare
Research and Quality (AHRQ), highlighted the available research on the
topics of hypertension, obesity, swallowing dysfunction, epilepsy,
mental health, physical activity and fitness, access to health care,
women's health, violence, case management, complementary and
alternative medicine, substance abuse and tobacco use, and secondary
conditions as they relate to persons with intellectual and
developmental disabilities. Nationally recognized researchers and
clinicians in the field authored these chapters, in which they
identified the state-of-the-science on these topics.
Overall, these authors found that the available research was often
conducted using nonempirical levels of research evidence such as
anecdotal reports, case studies, and expert opinions. Only in the areas
of epilepsy, mental health, and physical activity and fitness were
there higher levels of randomized and controlled trials. It is
imperative that efforts be made on the federal level to set aside
funding for empirical research studies on areas concerning health
promotion for persons with intellectual and developmental disabilities
that not only involve such individuals as participants, but also as
active partners in the conduct of the research. Specifically, these
authors found that individuals with intellectual and developmental
disabilities, depending on their diagnosis, may be at higher risk for
hypertension, obesity, swallowing dysfunction, seizures, mental health
conditions, and substance abuse and/or tobacco use. Such individuals
may also be more vulnerable to acts of violence against them. Based on
their diagnosis, individuals with intellectual and developmental
disabilities are also at risk for the development of secondary
conditions, such as heart conditions, motor problems, bowel and bladder
conditions, and sensory problems. As a result, it is important that
when guidelines are established for health conditions such as
hypertension (e.g., Guide to Clinical Preventive Services by the U.S.
Preventive Services Task Force), the specific evidence and
interventions needed to assure optimal health for persons with
intellectual and developmental disabilities be included in these
guidelines.
An important chapter in this book was that on access to care for
this population. This essential disparity has been highlighted by the
Special Olympics and the current and past surgeon generals. Current
research is focused on the areas of access to health care, access to
insurance, satisfactions with health care, changes associated with
deinstitutionalization, quality of health care, unmet health needs,
health care barriers (individual, systemic, and financial), access to
dental care (including access to preventive dental care, access to
dentists, quality of dental care, unmet dental care needs, and barriers
to dental care), as well as barriers to providing medical or dental
care. The authors suggested that the following solutions are needed:
--Health care professionals, not just physicians and dentists, needed
additional didactic and clinical experience in the care of
persons with intellectual and developmental disabilities.
--Improvements are necessary in the communication between
professionals, professionals and the individual, and
professionals and the individual's family for better continuity
of care.
--Health records that are regularly updated and readily available to
professionals and family members are a necessity. The chaos
after Hurricane Katrina emphasized such a need because many
nonverbal people were relocated, professionals had no means of
knowing their diagnosis, much less the medications and
treatments that had been regularly provided.
--Increased reimbursement to health care providers for the care of
persons with intellectual and developmental disabilities is
essential because more time and additional equipment are
necessary to accommodate their physical and emotional needs.
--Individuals with intellectual and developmental disabilities
require access to appropriate and affordable health insurance.
--Health literacy should be a required skill for persons with
intellectual and developmental disabilities. When necessary,
caregivers should supplement or support the person with
intellectual and developmental disabilities to gain as much
health information as possible and as appropriate.
--Caregivers of persons with intellectual and developmental
disabilities also require knowledge of the health care system
and ways in which they can best navigate the system to obtain
the services, knowledge, and supports they need for individuals
with intellectual and developmental disabilities to have
optimal health over the course of their lives.
This list is by no means complete, but it provides a look at the
areas in which
America needs to improve the health care system so that individuals
with intellectual and developmental disabilities can achieve
accessible, affordable, and appropriate health care. To this end, the
members of the AAMR Health and Wellness Action Group have developed the
AAMR Declaration on Health Parity for Persons with Intellectual and
Developmental Disabilities which will be posted on the AAMR website in
the coming months. This document succinctly summarizes the points made
in this testimony and concludes that all persons with intellectual and
developmental disabilities should have:
--An ongoing plan for health that crosses all settings and extends
throughout a person's life.
--A medical home.
--A barrier-free access to health care.
--Preventive health screening and assessments for common chronic
conditions and other conditions associated with aging in the
general population.
--Opportunities for choice and self-determination in all areas that
affect health and available support as needed when making
difficult choices about health.
In addition, systems of health care should achieve:
--Appropriate referrals to qualified and knowledgeable health care
providers.
--Multidisciplinary care.
--Reduction in health disparities at all levels.
--Reimbursement for health services and supports aimed at preventive
care and healthy living.
--The provision of and funding for all daily health services and
supports needed in addition to those services and supports
needed for the specific diagnosis.
--The availability and requirement of didactic and clinical
instruction in the care of persons with intellectual and
developmental disabilities for all health care professionals
prior to licensure and in continuing professional development.
--Timely dissemination of evidence-based practices concerning the
care of persons with intellectual and developmental
disabilities.
--Adequate available funding for continued research into preventive
health topics and best practices for healthy living.
AAMR appreciates the opportunity to present their concern that
increased efforts are needed to improve the health disparities present
for persons with intellectual and developmental disabilities. We have
presented our recent efforts in this area and extend our support to
Senator Harkin. We welcome the opportunity to continue to work with our
colleagues in the legislature and in the professional and self-advocacy
spheres to create health parity for this important segment of our
society.
______
Prepared Statement of Roberta Blomster
Thank you Mister Chair and members of the Committee. I wish that I
could testify today, but with a lot of testimony from the list of
witnesses and not a lot of time, I'm proud to submit my written
testimony for the Hearing Record.
Hello, my name is Roberta Blomster and I am a Special Olympics
athlete from Minnesota. I compete in Bowling & Golf. I am a certified
Special Olympics' Athletics Coach, having just finished my third year.
I compete in Sled Dog Racing (which is not yet a S.O. sport, I'm
working on that). I am a Special Olympics Global Messenger, a
nationally trained Athlete Leader, and a Trainer. I am also involved
with Self-Advocacy-helping to get the Modernization of Language, the
Voter Rights and the Advocating Change Together bills to become law and
serving on the Voting Machines Options Working Group in Minnesota, and
getting involved with H.R. 4704. I am currently serving a 3-year term
on the Minnesota Governor's Council on Developmental Disabilities. I'm
a member of the Chaska Area Jaycees in Chaska, Minnesota. I have
attended The Arc of Minnesota's Disability Day at the Capitol, and the
2006 Special Olympics Capitol Hill Day in Washington, D.C. I am
certified in CPR/First Aid, which is extremely helpful when I'm
coaching Athletics. I am proud to be the Athletes and Government
Columnist for Special Olympics Incorporated's Quarterly Magazine,
Spirit.
My experience with Healthy Athletes has been eye opening! I went
through all of the programs at the 1999 Special Olympics World Summer
Games in North Carolina and that made me realize that these programs
are important to Special Olympics athletes worldwide. For many of the
world's athletes, this is there only contact with medical, dental and
eye services. Then Special Olympics Minnesota began to add Opening Eyes
and Special Smiles, followed by Healthy Hearing, FUNFitness, Fit Feet,
and Health Promotion. This year, they added MedFest to the roster. All
of these programs are done at their State Summer Games over at the
University of Minnesota and separately at the other State Competitions
that Special Olympics Minnesota puts on. I had gone through Opening
Eyes, Healthy Hearing and Special Smiles at a previous SOMN State
Summer Games. I went through Opening Eyes, Special Smiles, Healthy
Hearing, Fit Feet, FUNFitness, and Health Promotion, which was a
Diabetes screening at the 2005 Special Olympics Minnesota State Summer
Games, followed by going through FUNFitness again at the 2005 Special
Olympics Minnesota Fall Sports Festival Golf Tourney. At the 2006
Special Olympics Minnesota State Summer Games, I had gone through
FUNFitness, Health Promotion, which was a Nutrition Seminar; and the
Diabetes screening (which is now separate). Each year we have athletes
getting new glasses as needed. We have had athletes get major dental
work done through this program. In Minnesota it is very difficult to
find a dentist if you are on Medicaid. Very few dentists remain in the
state program, stating they cannot afford to do the work at the price
the State is willing to pay.
Healthy Athletes is vital, especially to the Special Olympics
athletes who are under Medicaid in this country and who will have to
face the steep cuts in the Deficit Reduction Act of 2005. I am not only
on Medicaid, but Medicare also. I know how the Health Care thing
works--Federal is primary and State is secondary, that's how it works.
But I know that this wonderful initiative is helping me to realize that
people with intellectual disabilities do need to have access to health
care just like everybody else. It is not fair that the world's largest
disability population is denied the right to accessible and affordable
health care, but Healthy Athletes is one solution for people with
intellectual disabilities worldwide who compete in Special Olympics,
since the screenings are free.
I have run into a problem with the plan that I am on for Medicare
Part D, that of course being Humana. They have refused to cover the
Epilepsy medication that I have been on since the day that I was
diagnosed, Phenobarbital. This situation has not only furiated my mom,
but also myself. My doctor, Joseph Moriarity, believes that if the
medicine is still working for me, there is no need for me to go to
another medication. This medication was covered when I was only on
Medicaid, but it's not fair that Humana is refusing to cover a very
important medication that I am taking. The Medicare Part D Program is
very confusing. Trying to figure out which plan to use is impossible
for my peers and myself. My mom, who is an insurance agent, is totally
confused by it, so how are we supposed to make intelligent decisions
about this program. I believe that there should be a drug list for all
providers, not every provider making up their own.
The other issue with Medicare Part D, is that if someone is living
in a group or nursing home they are only allowed around $90 per month
for person items, including their drug co-pays. Under the Medicaid plan
we had a cap of $20 medical co-pays per month from out of our money.
Now there are no limits. Many may not have money to cover their
medications. Are we going to have to go un-medicated? What happens if
we hit the middle level when there is no coverage? I think Medicare
Part D needs some serious looking into the impact on our population.
Thank you again Mister chair and members of the committee for
allowing my voice to be heard on such an important topic.
______
Prepared Statement of the American Federation of Teachers
Chairman Harkin and other members of the committee, on behalf the
more than 1.3 million members of the American Federation of Teachers, I
am pleased to offer my views on the importance of creating paths for
people with intellectual disabilities to lead meaningful lives that
enrich our nation.
Chairman Harkin, no remarks on the issue can begin without
acknowledging and commending the way your long history as a tireless
advocate for people with disabilities has improved the lives of
countless children and families. The AFT shares your commitment to
improving the lives of the students our members serve, especially the
students with significant intellectual disabilities.
Every day in schools from Quincy, Illinois, just across the border,
to Corpus Christi, Texas, AFT members teach students with disabilities,
help them learn basic self care skills, nurture these children, and so
much more. Our work aims to help students succeed in the classroom and
in life. Preparing young people with intellectual disabilities for
success in life is one of the common objectives of AFT members and
groups like the Special Olympics, a truly noble institution.
As an organization, the AFT reflects these sentiments. Outside the
classroom, our union has provided financial support to the Special
Olympics, partnered with the organization to share the ``So Get Into
It'' service learning curriculum with our members, featured the program
in our flagship publication American Teacher, and asked our state and
local leaders to partner with the Special Olympics at the local level.
We've already seen the response. I am proud to say that in my home
state of New York, our AFT affiliate, the New York State United
Teachers, has been very active for years with the Special Olympics. Our
longtime president, Tom Hobart, as well as several officers, have
served on the state board of directors. A number of our members work as
volunteers and we have even helped with fundraising, where NYSUT
auctioned off a pair of 2002 Yankees World Series tickets for more than
$3,000.
In the classroom, AFT members are unyielding in their efforts to
improve the lives of all students, including the over 6 million with
disabilities and the hundreds of thousands of students with
intellectual disabilities. And we are seeing results.
The Individuals with Disabilities Education Improvement Act of 2004
focuses attention on helping students transition into life after
school, preparing some students for the workplace and some for
volunteer activities and other callings.
Yet, we know that there is still far more work to do to raise
graduation rates for disabled students and offer them a chance to
succeed in whatever they pursue. Along with supporters like you,
Senator Harkin and organizations like the Special Olympics, we stand
ready to run this race today--and in the future.
______
Prepared Statement of Dr. Gary N. Siperstein
As a researcher in the field of disabilities for more than 40
years, I have witnessed the evolution of policies and practices in the
Unites States for people with intellectual disabilities (ID). Early on
in my career, children with intellectual disabilities (then known as
mental retardation) were physically segregated from their peers without
disabilities. Teachers were hesitant about teaching students with
special needs in their regular classrooms, and parents expected that
the inclusion of students with intellectual disabilities would impede
the academic and social achievements of their own children. Over the
years, a myriad of research studies demonstrated that children did hold
negative attitudes toward their peers with intellectual disabilities,
and in fact socially rejected and isolated these peers (Johnson, 1950;
Baldwin, 1958; Hughes et al, 1999; Siperstein & Bak, 1985b; Siperstein,
Bak & O'Keefe, 1988; Wolfberg, Zercher, & Lieber, 1999; McDougal et
al., 2004).
The United States has made important progress in promoting the
rights and inclusion of people with disabilities through major
legislative acts such as Public Law 94-142, ADA (1990), and the recent
reauthorization of IDEA (2004). As a result, buildings are now
accessible to people with disabilities, classrooms are now open to all
learners, and the potential for employment exists for all groups.
However, people with intellectual disabilities continually face
significant barriers, the most significant of which is public
attitudes.
The Center for Social Development and Education (CSDE) at the
University of Massachusetts Boston has a long history of conducting
research on the social development of children with disabilities, with
a focus on peer attitudes and social acceptance. In 2001, CSDE and
Special Olympics entered into a collaborative research partnership and
created the Regional Collaborating Center (RCC), with the purpose of
carrying out research on issues related to people with intellectual
disabilities. The RCC's work bolsters the strategic position of Special
Olympics in ``changing attitudes and changing the world.'' At the RCC,
we strongly believe that public attitudes can open and close doors to
society for individuals with intellectual disabilities, thereby
affecting their dignity, self-esteem, and self-worth.
The first initiative of the RCC was to document the global
attitudes toward people with intellectual disabilities. To do this, we
have been engaged in a 5-year program carrying out a multinational
survey that presently consists of eleven countries from every region of
the world. As part of this study, a national survey was conducted in
the United States. The results of this national survey provide evidence
that the progress that we have made in disability policy in this
country has not extended far enough. For example, despite the
visibility of people with disabilities, and the increase in services
available to people with disabilities, the American public perceives
people with intellectual disabilities as having limited capability to
be self-sufficient, live independently in the community, work in
competitive employment, and learn in regular classrooms. More
specifically, while most of the public perceive people with ID as
capable of simple skills like washing and dressing (70 percent), and
engaging in simple conversation (88 percent), many fewer perceive
people with ID as capable of complex skills like handling money (45
percent) or handling emergencies (28 percent). This suggests that while
the majority of people with intellectual disabilities are mildly
impaired (85 percent), the American public underestimates their
abilities and perceives them to be moderately to severely impaired.
The most significant and surprising finding from this survey is
that after years of mandated inclusion, the American public continues
to support the segregation of students with special learning needs. In
fact, two-thirds of the public (64 percent) in the United States
believe that children with intellectual disabilities should be taught
in separate, special schools. This support for special schools mirrors
the beliefs of the public in ten other countries, including Brazil,
China, Russia, and South Africa. While beliefs for separate schooling
are understandable in these other countries, where disability rights
are still emerging, it is striking that such beliefs still exist in the
United States. It is possible that Americans do not believe that the
current education system can handle inclusion, as more than 40 percent
of the public expect inclusion to impede the learning of other
students, and more than 70 percent believe that there is a lack of
sufficient resources for inclusion, including properly trained
teachers.
Special Olympics and CSDE recognize that youth play an important
role in the success of inclusion and in achieving real societal
attitude change, as they are our future community members and policy
leaders. Therefore, in 2004, the RCC expanded its global knowledge base
of public attitudes toward people with ID by examining the attitudes of
youth worldwide. This youth initiative started with more than 5,000
youth from the United States and more than 4,000 youth from Japan, and
continues today in Europe and China.
In the United States, youth have grown up with inclusion as a
standard practice in their schools. As a result there is an expectation
that major improvements have occurred in youth attitudes toward people
with intellectual disabilities when compared to the attitudes of youth
in the 1960s and 1970s. However, our national survey of 5,800 youth
suggests differently. In fact, the findings suggest that the perception
youth hold of their peers with intellectual disabilities today is no
different than the perceptions of youth 30 years ago (Gottlieb &
Siperstein, 1976; Siperstein & Bak, 1980; 1985b). More specifically,
youth perceive students with intellectual disabilities as moderately to
severely impaired, and not capable of tasks that the average adolescent
is able to carry out (e.g. choose their own clothes (63 percent),
handle money (38 percent)). Further, while youth are much more
supportive of the inclusion of students with intellectual disabilities
than adults in the United States, they are still not fully supportive.
For example, while most youth believe that students with ID can
participate in non-academic classes like gym and art (77 percent), much
fewer believe students with ID can take part in classes like math and
English (40 percent).
Since the earliest days of inclusion, the most significant concern
for students with intellectual disabilities has been the challenge of
engaging in meaningful social interactions and relationships with their
peers without disabilities. One of the major findings of the Youth
Attitude Study is that youth are willing to interact with their peers
with ID in the structured school setting, where roles and norms are
clearly defined, but they do not extend their interactions beyond the
schoolyard. For example, most youth indicate that they would lend a
student with ID a pencil (91 percent) or say hello to the student in
the hall (81 percent). However, outside of school, few youth in the
United States would invite a student with ID to their house (35
percent), or talk with a student with ID about personal things (27
percent). This lack of social interaction outside of school is not
surprising given that only 10 percent of youth in the U.S. report
having a friend with ID. These findings make clear that not much has
changed in the past decades. Youth still do not view their peers with
intellectual disabilities as potential friends (Zetlin & Murtaugh,
1988; Siperstein, Leffert, & Wenz-Gross, 1997; Siperstein, Norins, &
Mohler 2006).
The Special Olympics movement clearly is a driving force in
educating the public about intellectual disabilities as they work
tirelessly to see that people with intellectual disabilities are fully
accepted into society. With the knowledge gained through our research
initiatives, the UMass Boston/Special Olympics RCC is working to
identify ways to create lasting change in the publics' attitudes toward
individuals with intellectual disabilities. One approach to changing
attitudes is through direct involvement in Special Olympics. In our
survey of adults, we found that those with more involvement in Special
Olympics are significantly more positive in their perceptions of people
with intellectual disabilities and their beliefs about inclusion in
school. Based on this finding, the RCC developed the Special Olympics
Gradient as a way to determine how involvement in Special Olympics
impacts attitudes toward individuals with intellectual disabilities. In
our national survey of adult attitudes in the United States, those
individuals with a lot of involvement in Special Olympics are more
likely to believe in inclusion than those with little or no involvement
in Special Olympics. This Gradient is strong evidence that Special
Olympics as a movement can have a significant impact on attitudes
towards individuals with intellectual disabilities.
Despite years of policies and legislation enacted to guarantee the
rights of individuals with disabilities, and the movement in our
society to be accepting and tolerant of diversity, we as a country have
been slow to extend this acceptance to people with intellectual
disabilities. As is evident from the results of our adult and youth
surveys, there is a lack of support for full inclusion, suggesting that
there is more work to be done if we are to ensure the acceptance of
individuals with intellectual disabilities in our society. We need to
expand our conception of diversity to include individuals with
intellectual disabilities. We need to provide more opportunities for
youth and adults to see the achievements of peers with intellectual
disabilities, with the recognition that difference is okay. We need to
bring about greater awareness about the educational, social,
recreational, housing, and employment needs of people with intellectual
disabilities. In sum, we need to recognize the value that people with
intellectual disabilities can contribute to the social, cultural, and
economic fabric of society.
REFERENCES
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Hughes, C., Rodi, M.S., Lorden, S.W., Pitkin, S.E., Derer, K.R. et
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CONCLUSION OF HEARING
Senator Harkin. Thank you all very much for being here.
That concludes our hearing.
[Whereupon, at 3:42 p.m., Sunday, July 2, the hearing was
concluded, and the subcommittee was recessed, to reconvene
subject to the call of the Chair.]