[Senate Hearing 109-897]
[From the U.S. Government Printing Office]

                                                        S. Hrg. 109-897
                            SPECIAL OLYMPICS



                                before a

                          SUBCOMMITTEE OF THE


                       ONE HUNDRED NINTH CONGRESS

                             SECOND SESSION


                            SPECIAL HEARING

                      JULY 2, 2006--WASHINGTON, DC


         Printed for the use of the Committee on Appropriations

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                  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
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
MIKE DeWINE, Ohio                    TIM JOHNSON, South Dakota
SAM BROWNBACK, Kansas                MARY L. LANDRIEU, Louisiana
                    J. Keith Kennedy, Staff Director
              Terrence E. Sauvain, Minority Staff Director

 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 
                           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


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


                          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.


    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 
    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 
    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.

    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 
    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 
    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 
    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.

    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 
    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 

                        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 

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 
    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.


    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 
    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.


    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 

    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.

    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 
    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 
    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 
    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 
    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
      --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 
    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 
    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 
  --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-
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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.
    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 
    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 
    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 
    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 . . . 

    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.

            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 
    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.

    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 
    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 
    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 
    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 
    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.

    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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. 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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.


    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


    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 
    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 
    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 
    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 
    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 
    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 
    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 
  --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 
  --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 
                 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, 
    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 
    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 
    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 
    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.


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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.]