[House Hearing, 110 Congress]
[From the U.S. Government Publishing Office]
DOES FEDERAL STATISTICAL DATA ADEQUATELY SERVE PEOPLE LIVING WITH
DISABILITIES?
=======================================================================
HEARING
before the
SUBCOMMITTEE ON INFORMATION POLICY,
CENSUS, AND NATIONAL ARCHIVES
of the
COMMITTEE ON OVERSIGHT
AND GOVERNMENT REFORM
HOUSE OF REPRESENTATIVES
ONE HUNDRED TENTH CONGRESS
SECOND SESSION
__________
JUNE 4, 2008
__________
Serial No. 110-110
__________
Printed for the use of the Committee on Oversight and Government Reform
Available via the World Wide Web: http://www.gpoaccess.gov/congress/
index.html
http://www.oversight.house.gov
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46-430 PDF WASHINGTON DC: 2009
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COMMITTEE ON OVERSIGHT AND GOVERNMENT REFORM
HENRY A. WAXMAN, California, Chairman
EDOLPHUS TOWNS, New York TOM DAVIS, Virginia
PAUL E. KANJORSKI, Pennsylvania DAN BURTON, Indiana
CAROLYN B. MALONEY, New York CHRISTOPHER SHAYS, Connecticut
ELIJAH E. CUMMINGS, Maryland JOHN M. McHUGH, New York
DENNIS J. KUCINICH, Ohio JOHN L. MICA, Florida
DANNY K. DAVIS, Illinois MARK E. SOUDER, Indiana
JOHN F. TIERNEY, Massachusetts TODD RUSSELL PLATTS, Pennsylvania
WM. LACY CLAY, Missouri CHRIS CANNON, Utah
DIANE E. WATSON, California JOHN J. DUNCAN, Jr., Tennessee
STEPHEN F. LYNCH, Massachusetts MICHAEL R. TURNER, Ohio
BRIAN HIGGINS, New York DARRELL E. ISSA, California
JOHN A. YARMUTH, Kentucky KENNY MARCHANT, Texas
BRUCE L. BRALEY, Iowa LYNN A. WESTMORELAND, Georgia
ELEANOR HOLMES NORTON, District of PATRICK T. McHENRY, North Carolina
Columbia VIRGINIA FOXX, North Carolina
BETTY McCOLLUM, Minnesota BRIAN P. BILBRAY, California
JIM COOPER, Tennessee BILL SALI, Idaho
CHRIS VAN HOLLEN, Maryland JIM JORDAN, Ohio
PAUL W. HODES, New Hampshire
CHRISTOPHER S. MURPHY, Connecticut
JOHN P. SARBANES, Maryland
PETER WELCH, Vermont
------ ------
Phil Schiliro, Chief of Staff
Phil Barnett, Staff Director
Earley Green, Chief Clerk
Lawrence Halloran, Minority Staff Director
Subcommittee on Information Policy, Census, and National Archives
WM. LACY CLAY, Missouri, Chairman
PAUL E. KANJORSKI, Pennsylvania MICHAEL R. TURNER, Ohio
CAROLYN B. MALONEY, New York CHRIS CANNON, Utah
JOHN A. YARMUTH, Kentucky BILL SALI, Idaho
PAUL W. HODES, New Hampshire
Tony Haywood, Staff Director
C O N T E N T S
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Page
Hearing held on June 4, 2008..................................... 1
Statement of:
Coelho, Hon. Anthony, former Member of Congress, author of
the Americans with Disabilities Act; Pat Pound, vice
chairperson, National Council on Disability; Dr. Eddie
Glenn Bryant, Governor's Committee on Employment of People
with Disabilities; and Dr. Holly Hollingsworth, associate
research professor, Occupational Therapy, Washington
University School of Medicine.............................. 47
Bryant, Eddie Glenn...................................... 64
Coelho, Hon. Anthony..................................... 47
Hollingsworth, Holly..................................... 71
Pound, Pat............................................... 55
Tingus, Steven, Deputy Assistant Secretary for Planning and
Evaluation, U.S. Department of Health and Human Services,
accompanied by Mr. Enoch; and Daniel Bertoni, Director,
Education, Workforce and Income Security Issues, Government
Accountability Office...................................... 3
Bertoni, Daniel.......................................... 22
Tingus, Steven........................................... 3
Letters, statements, etc., submitted for the record by:
Bertoni, Daniel, Director, Education, Workforce and Income
Security Issues, Government Accountability Office, prepared
statement of............................................... 24
Bryant, Dr. Eddie Glenn, Governor's Committee on Employment
of People with Disabilities, prepared statement of......... 67
Clay, Hon. Wm. Lacy, a Representative in Congress from the
State of Missouri, prepared statement of Ms. Dudley........ 41
Coelho, Hon. Anthony, former Member of Congress, author of
the Americans with Disabilities Act, prepared statement of. 50
Hollingsworth, Dr. Holly, associate research professor,
Occupational Therapy, Washington University School of
Medicine, prepared statement of............................ 74
Pound, Pat, vice chairperson, National Council on Disability,
prepared statement of...................................... 58
Tingus, Steven, Deputy Assistant Secretary for Planning and
Evaluation, U.S. Department of Health and Human Services:
Followup questions and responses......................... 34
Prepared statement of.................................... 6
DOES FEDERAL STATISTICAL DATA ADEQUATELY SERVE PEOPLE LIVING WITH
DISABILITIES?
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WEDNESDAY, JUNE 4, 2008
House of Representatives,
Subcommittee on Information Policy, Census, and
National Archives,
Committee on Oversight and Government Reform,
Washington, DC.
The subcommittee met, pursuant to notice, at 2:05 p.m., in
room 2154, Rayburn House Office Building, Hon. Wm. Lacy Clay
(chairman of the subcommittee) presiding.
Present: Representatives Clay and Turner.
Staff present: Darryl Piggee, staff director/counsel; Jean
Gosa, clerk; Alissa Bonner and Michelle Mitchell, professional
staff members; Charisma Williams, staff assistant; Leneal
Scott, information systems manager; John Cuaderes, minority
senior investigator and policy advisor; and Benjamin Chance and
Chris Espinoza, minority professional staff members.
Mr. Clay. The Information Policy, Census, and National
Archives Subcommittee will now come to order. In today's
hearing we will examine whether Federal statistical data
adequately serves people living with disabilities.
Without objection, the Chair and ranking minority member
will have 5 minutes to make opening statements, followed by
opening statements not to exceed 3 minutes by any other Member
who seeks recognition. Without objection, Members and witness
may have 5 legislative days to submit a written statement or
extraneous materials for the record.
And I will begin with an opening statement. Today we will
explore the challenges of collecting reliable data that
measures the status of individuals living with disabilities.
We will also examine ways in which the Federal Government
can better monitor and evaluate effectiveness of laws, policies
and programs that serve disabled Americans.
Over 50 million Americans living with disabilities rely on
public programs for support. In addition, the Federal
Government spends billions of dollars on programs aimed at
improving the lives of individuals with disabilities.
Program enrollment and allocation of Federal dollars have
grown and will continue to grow. Therefore, it is essential
that Congress and other policymakers know if current programs
perform according to expectations.
Hopefully this hearing can begin a process to evaluate
current policies and determine whether they are effective to
assist people living with disabilities and help Congress plan
for future needs.
We have some outstanding witnesses who are here to share
their expertise about this issue and to make recommendations on
how Congress can best move forward. I thank you all for
appearing and look forward to your testimony. And I now yield
to the distinguished ranking minority member, Mr. Turner of
Ohio. Mr. Turner.
Mr. Turner. Mr. Chairman, thank you for holding this
hearing on whether Federal statistical data adequately serves
people living with disabilities. Today we will examine an
important aspect facing our Federal statistical community, the
assembly of data that is both consistent and intelligible to
different agencies and organizations in order to accurately
reflect the number of people living with disabilities here in
the United States. This type of data is of critical importance
to policymakers so they can target specific programs to varying
needs.
Mr. Chairman, there are many stakeholders interested in our
hearing today. Most importantly are those whose livelihoods are
affected by our government's ability to make sure that they are
accounted for.
As you know, the results of collecting accurate and uniform
data is important to decisionmakers across all levels of
government and the private sector. It is not enough to just
collect data. We must ensure that what we are doing we are
doing in a uniform and accurate manner. Unlike many countries,
our Federal statistical system is decentralized. The Census
Bureau is not the only Federal agency that collects statistical
data. There are also other Federal agencies which have offices
that collect narrowly tailored data sets that assist them with
agency specific programs.
The problem we are addressing today arises when various
agencies collect data using different criteria for what is
supposed to be a common problem. As the GAO reported, our
current system of data collection for those living with
disabilities can easily lead to difficulties. If not managed
properly, our decentralized system can sometimes produce
confusing and often misleading data on what are supposed to be
common factors. For these reasons we need a Federal body to
take the lead.
Mr. Chairman, I look forward to a productive hearing with
the assembled witnesses we have today. I look forward to
hearing witnesses' testimony about how we can account for those
with disabilities. Again thank you for holding this hearing,
and I yield back.
Mr. Clay. Thank you so much, Mr. Turner.
If there are no additional opening statements, the
subcommittee will now receive testimony from the witnesses
before us today. And I want to start by introducing our first
panel. We will begin with Mr. Steven Tingus, Deputy Assistant
Secretary for Planning and Evaluation within the U.S.
Department of Health and Human Services. Prior to his service
at HHS, Mr. Tingus worked at the California Foundation for
Independent Living Centers, Inc., where he provided an
information clearinghouse for the State's 6 million people with
disabilities.
And our final witness on the first panel is Mr. Daniel
Bertoni, GAO's Director of Education, Workforce and Income
Security team. This team assists Congress by examining whether
Federal programs are being effectively implemented and assuring
that Federal dollars are spent wisely. The work of his team
includes oversight of related programs within the Departments
of Health and Human Services, Agriculture, Education, Labor and
Veterans Affairs. Thank you both for appearing before the
subcommittee today.
And as is the policy of this subcommittee I would like to
swear you both in today.
[Witnesses sworn.]
Mr. Clay. Let the record reflect that the witnesses
answered in the affirmative.
I ask that each witness now give a brief summary of their
testimony and to keep his summary under 5 minutes in duration.
Your complete written statement will be included in the hearing
record. And Mr. Tingus, you may begin.
STATEMENTS OF STEVEN TINGUS, DEPUTY ASSISTANT SECRETARY FOR
PLANNING AND EVALUATION, U.S. DEPARTMENT OF HEALTH AND HUMAN
SERVICES, ACCOMPANIED BY MR. ENOCH; AND DANIEL BERTONI,
DIRECTOR, EDUCATION, WORKFORCE AND INCOME SECURITY ISSUES,
GOVERNMENT ACCOUNTABILITY OFFICE
STATEMENT OF STEVEN TINGUS
Mr. Tingus. Thank you, Mr. Chairman.
Mr. Clay. Make sure the mic is on and pull it up closer.
Mr. Tingus. Thank you, sir. Thank you, Chairman Clay and
distinguished members of the subcommittee. I am honored to be
here to talk about Federal statistical data on people living
with disabilities, and the current state of efforts and
resources that we should think about for the future.
As you said, my name is Steven Tingus. I'm the Deputy
Assistant Secretary For Planing and Evaluation at Health and
Human Services. Prior I was a Director of the National
Institute on Disability and Rehabilitation Research at the
Department of Education.
While these important positions have been remarkable in my
tenure in the administration, my--as you can see, I am a person
living with a disability in the community and also in the work
force. I was born with a rare form of muscular dystrophy and
used technology to maintain my independence. I use a ventilator
at night, assistive technologies also during the day, personal
assistance services, such as my assistant Mr. Laws, and other
types of needs so that I can take care of my activities of
daily living, both at home and at the workplace. A vast,
extensive research, disability research and service programs
and technologies has made the difference for me between a life
of dependence and perhaps institutionalization compared to the
life I lead, fully independent, active in the community, and a
hard worker, and a great career.
I came into the world when people like myself attended
handicapped schools, regardless of disabilities. That was
before the Individuals with Education Act and the
Rehabilitation Act in 1973. Disability services were State and
local if they existed at all at that time.
My teacher in the handicapped school said I had the
potential to succeed, and she worked to get me into public
school. Davis, CA, a city in northern California, said that I
could try it if I were mobile. If it weren't for the help that
the Muscular Dystrophy Association gave me in purchasing a
power chair at that time, I would not be before you today. And
as a result I was the first mainstream disabled student in
northern California basically in 1974.
I grew up along with the rapid development of private and
public services. When I finished high school, I was fortunate
and became eligible for SSDI and SSI, which gave me access to
Medicare and Medicaid benefits. Since I had a preexisting
condition, I was the not eligible for health insurance. Because
of the public benefits I was able to attend school,
undergraduate and graduate school. After I worked for Governor
Pete Wilson in charge of health care for long-term care, and
ever since then I've been a proud taxpayer.
I am grateful for the progress thanks to both formal and
informal services I received. And I'm glad that many others
like me are moving forward. To keep our national disability
policy agenda moving forward, we must work on establishing
credible data systems about people with disabilities and the
services that they use.
As you know, 51 million Americans have a disability and are
served by over 200 Federal programs. Thus, data is critical and
cover a large range of needs. We're fortunate to live in the
United States with excellent civil rights laws. It's a great
place for a person with a disability. It can be confusing
because of the number of programs. Some people with
disabilities get services, but they don't know what program
they are on. Thanks to the President's commitment to the New
Freedom Initiative, a lot of programs are starting to
collaborate in ways that better meet the needs of people with
disabilities; for instance, disabilityinfo.gov administered by
the Department of Labor.
Many of the surveys contained, as provided in my written
testimony, provide a question on disability. However, we need
to work on combining these surveys with administrative data
such as that provided by SSA to show how many people with
disabilities are served by Federal programs.
ASPE, my office and others have been working to merge
survey data into one source. By having a variety of data
sources on disability provides great benefits to you, the
policymaker. Each source measures disability in a particular
way. Work is currently under way to standardize survey
questions.
I commend my colleagues here, GAO and NCD, for their recent
reports on this issue and would like to refer to the programs--
that I would--sorry, I would like to say that they are making
efforts with regard to the issue, especially providing
government coordination. Recently there has been a number of
recommendations by NCD to incorporate measures that evaluate
participation. I think this is a great step forward and will
help the Federal Government to improve services for people with
disabilities.
I want to be clear it is very important that services and
benefits be well designed and coordinated and that each person
is evaluated along their life span, because there are different
issues at each life span--part of the life span.
I would like to also say that detailed survey and data
information on some populations of disabilities, especially
those apparent with ethnicity data, is lacking. And we hope
that greater efforts are made by the outcome of this community.
In conclusion, over the past 7\1/2\ years we have made
enormous strides implementing the President's New Freedom
Initiative. Doors have opened in education, community living,
technology and work force. I am very pleased to have played a
small part in this progress.
The President's initiative for people with disabilities,
however, has not been fully met. We remain fully committed to
continuing to use disability data to pursue innovative
strategies for people with disabilities so that they can
partake in the American dream.
Thank you, Mr. Chairman, for holding this meeting and I'm
happy to answer your questions.
[The prepared statement of Mr. Tingus follows:]
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Mr. Clay. Thank you so much, Mr. Tingus. Mr. Bertoni, you
may proceed.
STATEMENT OF DANIEL BERTONI
Mr. Bertoni. Mr. Chairman, members of the subcommittee,
good afternoon. I'm pleased to be here to discuss the
importance of comprehensive and reliable data as a tool for
evaluating Federal policy in assessing the status of those with
disabilities. At present about 50 million individuals in the
United States have a disability and are served by more than 20
agencies and almost 200 Federal programs which provide an array
of assistance such as employment services, medical care and
monetary support.
We have reported that Federal programs generally compile
and track data to assess whether they are meeting specific
service delivery goals, such as improved case processing times
rather than to provide for a more comprehensive assessment of
the status and well-being of the disabled population on the
national level. Thus, we continue to lack key data on how
individuals with disabilities are faring and what role Federal
programs play in this regard.
My remarks today focus on the limitations of data currently
available to assess the status of those with disabilities and
how better coordination could facilitate the collection of data
to inform policy decisions.
In summary, disability policy and programs in the United
States have been developed on an individual basis over many
years with success often measured by narrow, programmatic
outcomes rather than a set of unified national indicators
essential to determining how we as a Nation are serving this
population.
The many programs serving those with disabilities often
have different missions, goals, funding streams and eligibility
criteria, and they also vary in the populations served due to
different definitions of disability. Not surprisingly, the data
these programs collect is often unique to their individual
caseloads, processing goals and timeframes, and cannot be
easily compiled to assess whether the beneficiaries are being
provided comprehensive services and supports nationwide.
Some efforts are underway to improve the consistency and
quality of data on a national level, more specifically in the
area of some Federal surveys where standardized questions and
definitions of disability are slated to be used to better
assess disability status.
Experts who participated in our 2007 Comptroller General
Forum on Disability Policy have noted that standardized
language that can be used by related programs could facilitate
consistent data collection, as well as any future efforts to
assess the status of individuals with disabilities.
We and others have also acknowledged the need to move
beyond narrowly focused programmatic measures and to develop a
comprehensive set of outcomes to measure the Federal
Government's success toward improving the lives of individuals
with disabilities. To that end some experts have suggested
using multiple indicators, including quality of life and
economic indicators, as key data elements. Regardless of the
indicators ultimately selected, rigorous data reporting
requirements should also be established to ensure comprehensive
and reliable information is available.
In regard to this issue, the National Council on
Disability's recently issued report is consistent with our view
given the complex challenges facing our Nation, including
serving those with disabilities. Indicator systems can be
useful for measuring progress toward meeting national goals,
identifying gaps in service delivery, ensuring accountability
and helping the Congress set priorities.
Moreover, GAO has called for a strategic plan for all of
government, supported by national outcome-based indicators for
key programs. The NCD report and other data sources could
inform this effort in the area of disability policy.
In conclusion, taking the critical first steps would be
finding agreed upon outcomes for assessing the status of
individuals with disabilities, and the metrics that will be
used to measure progress will require a coordinated effort.
Unfortunately, prior initiatives to coordinate Federal
disability programs have not been successful in this regard,
most notably the Interagency Disability Coordination Council
established by Congress in 1992. Without strong Federal
leadership to facilitate governmentwide agreement on outcomes
and coordination of cross-cutting programs, it's unlikely that
leaders from individual agencies will be able to effectively
reach consensus.
In May 2008, we noted that the Congress should consider
authorizing a viable coordinating entity consisting of key
Federal agencies that serve people with disabilities. As part
of its mandate this entity could facilitate discussion, build
consensus on national outcomes for Federal disability programs
and the data necessary to assess progress. It could also work
to bridge the gap between needed and available information and
prioritize further data collection efforts.
Mr. Chairman, this concludes my statement. I'm happy to
answer any questions that you or other members of subcommittee
may have. Thank you.
[The prepared statement of Mr. Bertoni follows:]
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Mr. Clay. Thank you, Mr. Bertoni. Thank you both for your
testimony. This now--we will now begin the Q and A portion of
the hearing. I will start with Mr. Tingus.
NCD made six recommendations on how the Federal Government
can improve its collection of data. One of the recommendations
was to have the National Institute on Disability and
Rehabilitation Research establish and fund a coalition of
disability policymakers and advocates to develop a fuller set
of indicators that are important to people with disabilities,
building on the indicators in the report.
Is this something that can be accomplished by NIDRR? And if
so, what would it require, particularly from Federal agencies
that currently serve an individual with disabilities?
Mr. Tingus. Mr. Chairman, as you well know I was the former
Director of NIDRR, N-I-D-R-R. I cannot speak on behalf of the
Department of Education. However, NIDRR does have an
Interagency Committee on Disability Research and you may want
to contact officials at the Secretary's Office to talk to the
staff about the possibility of them undertaking such a
responsibility.
Mr. Clay. I do understand the sensitivity of the question.
Mr. Tingus. There's a body there----
Mr. Clay. OK.
Mr. Tingus [continuing]. Within NIDRR that could address
the need.
Mr. Clay. The committee staff will followup with that.
Thank you for that response.
Mr. Tingus. Thank you, sir.
Mr. Clay. Let me--has the Department of Health and Human
Services implemented any other recommendations made by GAO or
by participants in GAO's forum. If so, which ones?
Mr. Tingus. Sir, one of the recommendations was the
establishment of the Aging and Disability Resource Centers,
that the Administration on Aging is heading. And that is our
first job in addressing the need of gathering more data on both
those aging and those aging with a disability.
Mr. Clay. OK. Thank you for that response. Does the
President's New Freedom Initiative have a provision for
collecting comprehensive data on people with disabilities?
Mr. Tingus. To my knowledge, sir, I would have to look at
the current version of the NFI to see what status that those,
SSA and other agencies, are doing. But I can get that
information to the subcommittee.
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Mr. Clay. I'd thank you for that.
You note in your testimony that there are varying
disabilities. This is an important point and will also be
stated by members of our second panel. You also state that even
if it were possible to combine all of the various programs and
eligibility groups, it would not serve people with disabilities
well.
Is it possible to have one survey for collecting data on
all people with disabilities or should there be different
surveys that allow data to compared across agencies?
Mr. Tingus. Sir, I believe that having one bureaucracy
handle this issue would not serve individuals, say, with
physical disabilities versus mental health issues versus
intellectual disabilities. All of our needs are different. And
I believe that our current instruments, while in place, could
be dramatically improved by the measures and the questions that
are included in the surveys. So I as a person with a disability
needing that information as a current member of the
administration would value that, but I don't think a one-stop
place would serve all people with disabilities.
Mr. Clay. So--go ahead.
Mr. Tingus. No, go ahead.
Mr. Clay. So for instance, the VA should be allowed to
render their services to the disabled community that they serve
then?
Mr. Tingus. Yes, sir.
Mr. Clay. I see.
You note that considerable work is needed to develop and
test possible questions that would measure the quality of life
of persons with disabilities and the extent to which they can
participate in life activities.
Mr. Tingus. Uh-huh.
Mr. Clay. Could you tell us a little more about the type of
work that must be done and give a rough time line of how long
it would take to complete this work?
Mr. Tingus. Sir, I'm not a statistician or a data
collector. However, as a person responsible for helping to
coordinate the effort, there are many factors in our lives that
need to be measured so that we can have a benchmark and look at
improvements for people with disabilities such as going to
church, going out to dinner with our friends, the ability to go
out because of adequate transportation and assistance. Factors
other than just saying, ``oh, I'm physically disabled'' or ``I
have a mental health disability'' isn't enough in today's
world. And it doesn't provide you or your members adequate data
to make decisions that affect the 50 million Americans with
disabilities. So a lot of work has to be done that I think
coordination, as NCD and the GAO have reported, is the best
step forward.
Mr. Clay. Thank you for that response. Thank you for your
answers.
Mr. Bertoni, the National Council on Disability recommended
using qualitative, as well as quantitative measures to assess
the quality of life of people living with disabilities. Can
qualitative factors, which may in some cases be subjective, be
used as effective measures?
Mr. Bertoni. I have seen the literature where the
qualitative-quantitative, objective-subjective--there is
validity in that whole range of measures. And I think it's
probably more valid when you have some combination thereof in
any vehicle that you send out to try to get your sense of
what's going on in a particular group.
Certainly when you get into some of the qualitative areas,
the quality of life, there's going to be many potential
stakeholders that should be involved in that discussion. There
will be many opinions as to what the desired outcome that they
are shooting for in any particular policy area; disability
policy would be no different. Numerous stakeholders, agency
advocacy groups experts, etc. Many opinions, priorities and
perceptions as to what should be included in that. I think--can
it be done? There are vehicles out there now that have mixtures
of qualitative-quantitative, subjective-objective to give you a
more holistic picture of a population. But I would agree with
the gentleman, he just stated that takes time, and there needs
to be consensus.
With variation in opinion, I think you're going to have to
have an in-depth discussion across groups, and I think a key
thing to keep in mind here is--and we've reported on this--that
no one sector or group should own the process. This should be
inclusive, it should be transparent, and I think there should
be acknowledgment that going into this process there are going
to be tradeoffs and folks will have to have some give and take
in terms of what's ultimately included in a set of indicators
to assess the status of the disabled.
So I think it can be done. At the end of the day what we
end up with, will folks--will everybody agree on the range of
measures or indicators that we selected? Probably not. But I
think if you can--if the folks buy into the process, its
inclusiveness, its transparency. The fact that all ideas were
vetted, all indicators were vetted, and the time that folks put
into this effort I think ultimately the community of
stakeholders will fall in behind the indicators. We need
something and we don't have much now.
Mr. Clay. Thank you for that response.
Mr. Turner.
Mr. Turner. Well, I want to thank you both for
participating in this hearing. And Mr. Tingus, I want to thank
you for your description of your personal history, because not
only is it very inspirational, but it's a great timeline of how
resources, and interests, and adaptability has shifted. Your
sharing that story with us certainly, certainly helps us and I
appreciate it.
My first question to both of you relates to the census
itself and accurate counting. Mr. Tingus, when you began your
description, you spoke of the assistance of technology that
allows you to have the great career that you have today.
Mr. Tingus. Right.
Mr. Turner. And some of the accomplishments that you've
had. And one of the concerns that we have is that as the
surveys are being undertaken as part of the census, you know,
that they be accessible to those with disabilities. And we're
obviously concerned that possible implementations and changes
to data collection must take into account the different mediums
that are required to collect data from all parties.
And I wonder if either of you had an opinion or information
you could share with us about our success or lack of success in
providing accommodation for the various technologies for
disabled individuals to participate?
Mr. Tingus. Sir, I think I will begin in answering that
question. A lot has been accomplished through section 508 with
regard to accessible IT. But I believe there needs to be a lot
more work to be done, especially with the evolution of the Web
and now talk about a Web 2.
Making information available to persons with disabilities
has always been one of the forefront efforts I believe in my
department, but the Department of Education as well. And I
believe that will continue. To the degree it depends upon
Congress, as you well know, there is limited funding. I believe
there needs to be more public-private partnership with regards
to making all sources of information accessible, not only that
coming from the Federal Government. So I think--I think we are
all doing our effort, but obviously that need will change as
technology changes, both for the person and as a communication
tool.
I hope I answered--I think----
Mr. Turner. Yes, you did. And I appreciate it very much.
Mr. Bertoni, do you have any comments on this issue?
Mr. Bertoni. I can't speak to what is, because I don't have
that information. I can speak to perhaps what should be.
Clearly with technology that we have today, if you are trying
to tap into a specific community or subpopulations within the
disabled community, you have to have a way to get there. And I
do believe that we have technology available to us now that I--
I don't see that as insurmountable. We--you just have to want
to do it. I think it would require public-private partnerships
to get there. I don't know how much is being done now. If it
isn't, I think it will require public-private partnerships.
One issue I--or concern that just came to mind is what's
going on at the State and local level, whether they have legacy
systems, their ability to fund, and be able to tap into the
state-of-the-art technology environment. I would see that as
something that could be a barrier.
Mr. Turner. Excellent, thank you. Very good comments. Mr.
Tingus, your comments with the Web are certainly very
important.
My second question goes to the issue of the various
agencies collecting data. Obviously we would hope in the best
cases that these agencies would coordinate among themselves
with sharing agreements and the ability to access each other's
data, but also go to the level of sharing strategic approaches
of what data are they collecting and why does it need to be
slightly modified in order to be usable by another agency. Also
what analysis the data goes through.
I wonder if you guys could speak for a moment on the issue
of the data sharing between Federal agencies, the challenges
associated with trying to merge the data, and the desire to
tailor it to the uses of the various agencies. How well are we
doing in cooperation, Mr. Tingus?
Mr. Tingus. We are--my office is doing a lot of
collaboration with the National Center on Health Statistics and
AHRQ. Specifically ASPE 94 and 95 was very active, actually
contributed to the development of disability questions in the
National Health Interview Survey on Disabilities.
So my office where I am now has been very active in working
on data collection needs. In fact, I see in the gallery some
leaders in that effort as well. So I'm not again a data
collector. I'm just a person within the administration trying
to make coordination as productive, as outcome oriented as
possible, but we are continuing to be a facilitator and a
broker of that effort. We do collaborate a lot.
I can't speak for the other departments. When I was at the
Department of Education, we also worked with HHS on the
National Health Interview Survey.
Mr. Turner. Thank you.
Mr. Clay. Thank you, Mr. Turner.
Mr. Tingus, just to I guess restate the question that I
asked Mr. Bertoni, can qualitative factors which may in some
cases be subjective be used as effective measures?
Mr. Tingus. I believe so. I believe it depends on the
questions that are developed. I would hope either now or in the
future in my next phase of my life will be a part of that
effort in developing the questions that will be of use in
getting solid data for both the agency and for Members of
Congress. But I see it--I've been here almost 8 years and I
have seen dramatic change within the timeframe that I've been
here. But as Mr. Bertoni has said, a lot of work still needs to
be done.
Mr. Clay. Just out of curiosity, what is the next phase?
Where do you see yourself?
Mr. Tingus. Well, as NCD reported in their performance
indicators, they really--I was very proud of their work--
emphasized quality of life measures that typically have not
taken the forefront in the talk that we have been involved
with. So I think that effort that they are doing and the work
and the guidance that GAO is providing will come together and
make quite a difference. Again as you all know, it is dependent
upon the funding that we receive. And these surveys do cost a
lot of money, and I hope that it improves in the future.
Mr. Clay. I thank you.
Mr. Bertoni. Mr. Chairman, I could offer one insight in
that area. I have another job looking at what's going on in the
area of VA's disability process and, to comment a little bit on
the Dole-Shalala proposal, they have a provision in there to
revise the benefit payment process or scheme for the VA program
that is going to--that would like to incorporate a quality--
some quality of life payments. And their model would use a
model that looked at activities of daily living. If you had
lost two or three of these activities of daily living, that
would equate to some payment in terms of a deterioration in
quality of life. Bathing, being able to dress yourself, drive a
car, feed yourself, etc. So packaging two or three of these
together would equate to some percentage disability rating. So
that's an example of trying to use that as a model to come to a
payment for loss of quality of life.
Mr. Clay. And of course that's not lobbying for increased
payment by GAO?
Mr. Bertoni. Excuse me.
Mr. Clay. That's not lobbying for an increased payment?
Mr. Bertoni. I'm just telling you what's out there.
Mr. Clay. Subjectively.
Mr. Bertoni. I'm looking at it very closely.
Mr. Clay. Well, thank you for that. Thank you both for your
testimony, and that concludes the testimony of the first panel.
Mr. Tingus. Thank you.
Mr. Clay. Without objection, we will submit into the record
a report from OMB on the related topic. Thank you, and the
second panel my come forward.
[The information referred to follows:]
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2Mr. Clay. We will now hear from the witnesses on our
second panel. And our first witness will be the Honorable
Anthony Coelho. Congressman Coelho was first elected to the
U.S. House of Representatives in 1978 from California's Central
Valley. I would like to also note that Congressman Coelho
happened to serve with my father and I've known him for a
number of years. While in the House, Mr. Coelho authored the
Americans with Disabilities Act, widely recognized as the most
important piece of civil rights legislation in the last 30
years.
Congressman Coelho retired from the House after six terms
but continued to devote much of his time to public service. He
served as chairman on the President's Committee on Employment
of People With Disabilities from 1994 to 2001. In addition,
President Clinton appointed him as Vice Chair to the National
Task Force on Employment of Adults with Disabilities and as
cochair to the U.S. Census Monitoring Board in 1998.
Welcome to the committee, Mr. Coelho.
Mr. Coelho. Thank you, Mr. Chairman.
Mr. Clay. Our second witness will be Ms. Pat Pound, vice
chairperson on the National Council on Disability. NCD is an
independent Federal agency which makes recommendations to the
President and Congress to enhance the quality of life for all
Americans with disabilities and their families.
In addition, Ms. Pound has served as executive director of
the Texas Governor's Committee on People with Disabilities
since 1997, where she makes policy recommendations to the
Governor and legislature regarding Texas' disability policy.
And thank you for coming today, Ms. Pound.
Our next witness will be professor emeritus, Dr. Eddie
Glenn Bryant with the South Carolina Governor's Committee on
Employment of People with Disabilities. Dr. Glenn Bryant earned
tenure at Illinois State University in the Department of
Special Education. She received her doctorate in counselor
education and a graduate degree in gerontology from the
University of South Carolina. That makes you a Gamecock and a
Cardinal.
Currently Dr. Glenn Bryant serves as an adviser and
consultant to the South Carolina Commission for the Blind. For
8 years she served as a representative on the Commission on
Rehabilitation Education, which is the accrediting body for
graduate rehabilitation counseling programs. In addition, she
is the cofounder of Sarcoidosis of the Midlands of South
Carolina. And thank you for being here Mrs.--Dr. Bryant.
And our final witness on this panel will be Dr. Holly
Hollingsworth. Dr. Hollingsworth is a statistician and
associate research professor of occupational therapy at the
Washington University School of Medicine in St. Louis. Dr.
Hollingsworth received his doctorate in applied statistics from
University of Illinois Champaign Urbana. And Dr. Hollingsworth
has previously served on the faculties of the University of
Illinois, the University of Pennsylvania, St. Louis University
and Maryville University. Dr. Hollingsworth joined the
Cognitive Rehabilitation Research Group at Washington
University in 2003 where he provides data analysis for
investigations aimed at improving everyday life of people who
have experienced a stroke. Thank you for being here, too,
Doctor. And thank you all for appearing before the subcommittee
today.
It is the policy of the committee to swear in our witnesses
before they testify, and I would like to ask all witnesses to
please stand and raise your right hands.
[Witnesses sworn.]
Mr. Clay. Thank you very much. You may be seated. Let the
record reflect that the witnesses answered in the affirmative.
I ask that each witness now give a brief summary of the
testimony. Keep your summary under 5 minutes in duration. Your
complete written statement will be included in the hearing
record. And Congressman Coelho, we will begin with you.
STATEMENTS OF HON. ANTHONY COELHO, FORMER MEMBER OF CONGRESS,
AUTHOR OF THE AMERICANS WITH DISABILITIES ACT; PAT POUND, VICE
CHAIRPERSON, NATIONAL COUNCIL ON DISABILITY; DR. EDDIE GLENN
BRYANT, GOVERNOR'S COMMITTEE ON EMPLOYMENT OF PEOPLE WITH
DISABILITIES; AND DR. HOLLY HOLLINGSWORTH, ASSOCIATE RESEARCH
PROFESSOR, OCCUPATIONAL THERAPY, WASHINGTON UNIVERSITY SCHOOL
OF MEDICINE
STATEMENT OF HON. ANTHONY COELHO
Mr. Coelho. Thank you, Chairman Clay. I appreciate it very
much that you are holding this hearing on an issue that is
critically important to millions and millions of Americans with
disabilities and to me personally.
I have submitted a written statement and with your
permission I will summarize the major points. Unfortunately,
after working on this issue nearly all my adult life, I cannot
today tell you precisely how many millions of Americans with
disabilities may benefit from this hearing. As you have already
heard, one of our witnesses said there were 51 million
Americans, another witness said there were approximately 50
million Americans, and there are others who say there are 54
million Americans. So that's why this hearing is so important
because nobody really knows.
This is why this hearing is a big deal and why I commend
you, Mr. Chairman, for your leadership. Just last year you
responded to my plea to help lead the fight in Congress to
oppose the administration's plan to eliminate the Survey of
Income and Program Participation [SIPP]. You helped expand the
life of the SIPP and ensure that is now more robust and ensured
that it will tell us so much more about the lifestyle of people
with disabilities. I thank you for your foresight and for your
success. Thank you, sir.
It is tempting to view statistics as a dry and technical
set of numbers. We must remind ourselves that there are real
people behind these numbers. Every month the Bureau of Labor
Statistics tells us how many people are unemployed. The data
allows policymakers to know what problems they must solve and
what issues Americans must address in their daily lives. Very
simply, our government acts only on what it can measure.
Government cannot seek to address problems it does not see.
Until very recently people with disabilities have not been
counted. The unemployment statistics I mentioned earlier are a
product of the Current Population Survey [CPS]. While the CPS
can tell us how many African Americans or Hispanic American
teenagers are unemployed each month, it cannot tell us how many
people with disabilities are unemployed from month to month. So
the government does not even know that it should respond to
rising or persistent unemployment among people with
disabilities, because it does not even know whether
unemployment is rising or persisting. Yet disability is an
ordinary part of the human experience. We are all just one
accident or health tragedy away from being among the uncounted.
I recognize that counting people with disabilities as we
count others is not a simple task. When I helped write
Americans with Disabilities Act in the late 1980's, we defined
disability not merely as an individual's physical or mental
impairment, but also how that impairment affects the
individual's major life activities. People with epilepsy like
me function exactly like everyone else until a seizure hits us,
and we are forced to overcome the fears and stereotypes that
pervade our culture.
I worked in this area for more than 20 years. However,
these efforts have been frustrated in part by the lack of data
needed to answer basic questions about employment and people
with disabilities. This became a critical focus of the work of
the Presidential Task Force on Employment of Adults With
Disabilities. That Executive order directed the Bureau of Labor
Statistics and the Census Bureau to design and implement a
statistically reliable and accurate method to measure the
employment rate of adults with disabilities as soon as
possible, but no later than the date of termination of the task
force.
Now 10 years after that Executive order was signed, finally
a set of six disability questions will finally be included in
the CPS for the first time this June 2008, 10 years later. We
have made slow progress, but much more needs to be done. The
six-question framework provides a model for standardizing the
way we collect data on disability in general purpose government
surveys.
The experts have tested and refined these six questions
over the course of these 10 years and perhaps longer. These
same questions should be included in every appropriate general
purpose government survey.
Mr. Chairman, I encourage you to ask the Director of the
Office of Management and Budget on behalf of the Congress,
urging him to require that these same six questions be included
in every Federal Government survey that asks about respondents'
race, sex, age or ethnicity. Even if we achieve these, these
six questions do not provide a perfect answer to the question
of who in America has a disability.
As we continue to gather data using these six questions we
need to evaluate whether people with certain disabilities such
as serious mental illness, cognitive impairments or episodic
conditions are represented in the survey data. Thus, the second
goal should be gathering more comprehensive, substantial data
focused upon people with disabilities.
Supplements to existing surveys with a specific focus are
likely needed to study disability more deeply and to help
inform the larger policy questions. We also need longitudinal
surveys to follow persons of all ages with disabilities over a
period of years to measure how a disability evolves, changes or
impacts individuals' lives and lives of their families. This is
a critical difference between disability and other human
characteristics like race and gender. Disability can change
over time. As you might expect, more people over the age of 65
report having a disability than people under the age of 21.
Perhaps more important, some impairments are episodic as they
may be disabilities in 1 month or year, but not in a different
month or year. We need statistical tools that will measure
those changes.
As I suggested earlier, the subcommittee can help move the
OMB to require all appropriate government surveys include the
basic set of questions on disability tested and employed in the
ACS and CPS. I also urge you to consider two additional steps
the subcommittee might take to continue the process we have
already made.
I recommend that the subcommittee, perhaps working with the
National Council on Disabilities, the National Institute on
Disabilities and Rehabilitation Research, and the leaders of
national disability organizations bring together experts and
advocates to recommend changes to existing surveys and new
avenues for the in-depth and longitudinal studies I just
discussed. We need to buildupon that to create a comprehensive
plan for moving forward.
Finally, it is absolutely critical that with the leadership
of this subcommittee that you work with the leadership of the
Appropriations Committee and its subcommittees to ensure--to
assure that the research agencies are adequately funded and in
particular that funding is set aside to continue to expand our
data collection activities. Expansion in the Federal Government
data collection efforts will require additional funding. The
pennies we invest in these agencies for good data help us save
millions in spending on Federal programs that are better, more
efficient and more effective.
Thank you for inviting me to testify today, Mr. Chairman.
[The prepared statement of Hon. Anthony Coelho follows:]
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7Mr. Clay. Thank you so much, Mr. Coelho.
Ms. Pound, you may proceed.
STATEMENT OF PAT POUND
Ms. Pound. Good afternoon. My name is Pat Pound, and on
behalf of the National Council on Disabilities I want to thank
you for allowing us to provide testimony to this very
distinguished subcommittee. Entities and independent Federal
agencies comprised of 15 members appointed by the President and
confirmed by the Senate, NCD's purpose is to promote policies
and practices that guarantee equal opportunities for people
with disabilities regardless of the severity or nature of the
disabilities, and to empower individuals with disabilities to
achieve economic self-sufficiency, independent living and
integration into all aspects of society.
Please note that in my written testimony I provided a
historical overview of national disability policy that I won't
cover verbally today.
NCD research and perspective. NCD is proud that during the
last 50 years advocates, policymakers and a wide variety of
public and private organizations have undertaken significant
efforts to pass or improve upon the law--legislation that
improves the lives of people with disabilities. For example,
the Americans with Disabilities Act, various sections of the
Rehabilitation Act, Individuals with Disabilities Education
Act, Ticket to Work and Workforce Improvement Act, to name but
a few.
Notwithstanding these various pieces of legislation and
policies, NCD has also noted that insufficient effort and
progress have been made to measure and reflect upon the overall
performance and effectiveness and impact of these laws and
policies related to people with disabilities. This conclusion
is based on various NCD policy evaluations over the last 6
years, and here's some examples.
In 2002, NCD published a report, and that noted the
problems that continued to be associated with widely used
disability employment data from the CPS and the summary
disability ability from the 2000 census. NCD also indicated its
concern with the collection of valid and reliable employment
and other data about Americans with disabilities arising from a
series of Supreme Court decisions over the last 3 years which
could likely raise the potential of a dramatic narrowing of the
legal standards for who is a person with a disability and
confound Federal data collection discussions further.
In a 2005 report, NCD found that Federal agencies have
given low priority to collecting and analyzing section 504
program data and there were major differences in the data
collection across agencies. None of the agencies have developed
information systems that comprehensively collect, aggregate or
summarize detailed information about compliance or complaint
reviews and their outcomes.
Again in a 2004 report, NCD expressed its interest and
support for improving two Federal data collection efforts that
are directly related to the Decennial Census, the U.S. Census
Bureau, ACS, and the Bureau of Labor Statistics CPS. And in the
written materials there are Internet references for each these
reports.
In the 2005 report NCD indicated grave concerns over a lack
of data that presents a comprehensive and accurate picture of
the cost of long-term supports and services for families that
have children and adults with disabilities.
In the 2006 report NCD noted a need to modify current
performance measures being used by OMB to assess individual and
program strengths and weaknesses, to focus on cross department
and agency collaboration to enhance livable community outcomes.
In the 2007 report, NCD described a surprising absence of
ongoing systematic data collection about the ADA and reported
the significant mileage gaps that result from this situation.
Several critical assessments from the GAO have been made that
support many of these findings. You have heard about them
earlier, on the first panel.
As a result of the analysis and the findings just
described, NCD concluded that more needs to be done on a
national level to address the need for a relevant disability
information system.
Now to our latest work. In 2008 NCD released a report
entitled ``Keeping Track National Disability Status and Program
Performance Indicators.'' This NCD report identifies and
describes three major objectives for the U.S. Government to
improve the lives of millions of people with disabilities.
First it lays out a road map for the Federal Government to
improve the status of its information, policies and programs,
performance accountability systems.
Second, keeping track includes a set of statistical social
indicators that have been mentioned already that NCD believes
are currently able to measure the progress of people with
disabilities in important areas of their lives over time. The
report includes 18 such indicators. And they are developed by
stakeholders, and they measure quality of life using both
objective and subjective measures. The indicators span a wide
variety of vast domains, including employment, education,
health status and health care, financial status and security,
leisure and recreation, personal relationships and crime and
safety. Collectively, they can create a holistic relevant
picture of the lives of people with disabilities.
Third, this report also provides or serves as a mechanism
for installing the set of indicators mentioned above into the
key national indicator system which is currently being
considered by the Federal Government. This national indicator
system is known today as the state of the USA, previously known
as the key national indicator initiative.
Conclusion. The landscape of American government is rich
with disability policy and programs designed to address
identifiable national issues, at least over the last 50 years.
Some of these policies and programs have worked well, some have
not achieved results intended. It is important that Congress
work to design a national disability information system that is
effective.
Do we need to stop?
Mr. Clay. Just for a minute, ma'am. OK, you may proceed,
ma'am.
Ms. Pound. OK, thank you. Congress should work to design a
national disability information system that is effective. Based
on NCD's scrutiny of these policies and programs, we make six
recommendations.
First, that the Federal Government establish and fund a
coalition of disability policymakers and advocates to first
develop a fuller set of indicators that are building on the NCD
indicators in this report. And second, to ensure the disability
that's included is a subgroup characteristic as the state of
the USA is developed. The state of the USA offers an important
opportunity to integrate disability into a larger national
indicator system. When completed, the SUSA will offer
individuals who are looking for disability data reliable, easy-
use access to this data. It will also highlight the importance
of including disability as a subgroup in analyzing the relative
status and progress of the population and highlight gaps in
disability data.
Second, promote a standard set of disability questions; you
have heard that already. Some important Federal surveys have
known disability measures while others are inconsistent and
vary, often resulting in inconclusive and confusing results. A
common core of disability questions on all Federal surveys
would improve comparability and improve national discourse
about disability data.
Mr. Clay. Excuse me. Ms. Pound, we're going to have to ask
you to conclude your testimony. Would you care to wrap up?
Ms. Pound. Certainly. There are six recommendations here. I
will let you review them in your written testimony. Many of
them are similar to things that you've heard already. And we
appreciate you very much listening to us and giving us this
opportunity and holding the hearing.
[The prepared statement of Ms. Pound follows:]
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Mr. Clay. Thank you very much, Ms. Pound, and we will get
back to you with questions.
Ms. Bryant, you may proceed for 5 minutes.
STATEMENT OF EDDIE GLENN BRYANT
Ms. Bryant. Good afternoon. Thank you so much Congressman
Clay, your staff, and the other congressional people who are
present, for holding this hearing and allowing me to be a part
of it. As a person who has been severely visually impaired,
coupled with two major chronic disease disorders for
approximately 30 years, worked in a variety of professions and
settings, lived in several States in different regions of the
country, served on board committees, task forces, researched
published referee articles and founded several organizations
that focus on persons with chronic illnesses and disabilities,
I bring a unique or varied opinion and approach to this all-
important question. I serve as an academician, a person with a
disability, and an advocate for persons with disabilities.
Quality of life has been a big issue for me for a very long
time, and as a result I have done an intense study on women,
especially women of color, with disabilities and their quality
of life. And also focusing on the impact that psychosocial
issues have on the quality of life of a person with a
disability. After thorough review of the National Council on
Disability Report entitled, ``Keeping Track National Disability
Status and Program Performance Indicators,'' April 21, 2008, I
support the conclusions and the recommendations. However, there
are some challenges.
Mr. Clay. Disband for a minute, please. OK, you may
proceed, I'm sorry.
Ms. Bryant. However, there are some challenges and gaps.
Today there is a group of individuals living with disabilities
that are not on any Federal, State or local rolls that would
collect information necessary to identify these indicators
which we need in order to determine the quality of life. Some
of these subpopulations include individuals that are
underrepresentative of disabilities, women of color with
disabilities, persons with disabilities in rural areas, persons
who desire not to be counted because of not being enrolled in
some type of program because they don't know about the programs
and services, or they are suspicious of the programs and
services.
Strategic exploration is needed in order to look at this
review process. Options for collecting data are vital. We must
maintain some of the traditional methods of collecting data by
strengthening them and expanding them, as well as expanding and
increasing some of the more modern methods of securing
information through technology. We must continue to do the
face-to-face, we must continue to do the door-to-door, we must
continue to meet with individuals in their cultural
environment, we must go to roundtables, town halls,
conferences, seminars, so on and so forth. We must find these
individuals, sit down with them, use standardized
questionnaires to collect this data.
It is vital that a coalition be created, which was
suggested in the end in the report. However, this coalition
must do more than develop fuller indicators for the instruments
or the assessment tools. This coalition must set guidelines and
policies so that there may be consistent questions included on
all Federal, State and local questionnaires and surveys that
are used if they are receiving Federal funds or will be
applying for Federal funds in the future. Multicultural and
cultural issues must be addressed when we are looking at the
underserved populations or the hard-to-count population with
disabilities, as well as when we are developing this coalition
to design and develop these instruments.
This coalition must do more than identify and develop a
fuller set of indicators that are important to people living
with disabilities to ensure that disabilities are included as a
subgroup characteristic. There must be some type of mandate
that these agencies or entities must subscribe to, and there
must be some penalty if they fail to comply. These individuals
that receive Federal funding must submit a report at the end of
the year showing the instruments, or including a copy of the
instruments that they used to collect the data. There should be
someone in the coalition or a department within the coalition
to oversee and to assist individuals developing instruments so
as to make sure that there is consistency, continuity and
standardization.
In order to develop an instrument that will assess accurate
and adequate information about the quality of life for
individuals with disabilities, these individuals living with
disabilities must be assessed in numerous ways and we must
include multiple indicators.
The functional description of the term ``disability'' is a
cornerstone of adequately measuring the quality of life for
people with disabilities. As a professor and a person living
with a disability, the definition has always troubled and
frustrated me. It never seemed to capture the essence of what a
disability really is. This term is so encompassing and complex
that, to define it as it has been in general terms, reduces it
to a very narrow and somewhat skewed concept with a confusing
and limited denotation.
Therefore, this problematic definition negatively
influences policies relevant to disability issues and concerns,
developments of instruments, collection of data, interpretation
of data, dissemination, and application of information which
may be inadequate and incorrect. In order to answer the broad
question regarding adequate data collection that can be
qualified and then expressed in quality-of-life terms, the word
``disability'' must become a description which can be
translated into a meaningful functional application regardless
of who or which agency or institution uses it.
This description also has to include aspects that are
sensitive to cultural issues in a diverse society which is
present and ever-growing in the United States. When the concept
of disability was written as a description with expanded and
inclusive information and criteria, then it becomes a
functional definition that can be used across agencies on
Federal, State and local levels to be inserted in all
instruments that are designed to measure issues relevant to
people with disabilities. This concept cannot be limited and
narrowly focused with the final indicator measuring being a
job, consistent work or gainfully employed.
The concept must move along with spectrum or indicators
with varying dimensional aspects addressed and included. If we
are truly serious about this functional description for the
term ``disability,'' the Coalition will need to examine every
definition and description it can find and determine if it
belongs, and if it does where should it be located along the
continuum on the spectrum of the description.
In conclusion, quality of life can be more adequately
determined when the above-mentioned items are developed,
integrated, and implemented with policy guidelines designed to
assist the process of collection, interpretation, and
application that have flexibility with uniformity. Thank you.
Mr. Clay. Thank you so much, Dr. Bryant.
[The prepared statement of Ms. Bryant follows:]
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Mr. Clay. And, Dr. Hollingsworth, you may proceed.
STATEMENT OF HOLLY HOLLINGSWORTH
Mr. Hollingsworth. Thank you Mr. Chairman. It's my honor to
stand in for Dr. David Gray as a witness at this hearing. By
most measures, Dr. Gray would have values comparable to a very
successful person. He's a recognized researcher at the highest-
ranked occupational therapy program in the country. Before
joining the faculty of Washington University he was a
Presidential appointee and Director of the National Institute
of Disability Rehabilitation Research. He's a family man with
three grown children and two grandchildren. It is because of a
several-time-delayed visit to his grandchildren that he is not
here today. For many of the objective measures of quality of
life, Dr. Gray would exceed national averages on income and
education, housing, transportation. By many objective measures
of society. Dr. Gray is far below national standards. Because
of an accident, Dr. Gray is a quadriplegic, a person who is
permanently unable to move his arms or legs. He does have some
arm movement, and with the aid of assistive devices he's able
to feed himself, drive an adaptive vehicle and use a computer.
A medical model measure, such as the functional independence
measure, Dr. Gray would score poorly. Medical modern measures
assess the ability to perform a function. These measures are
what people can do in clinical settings.
For example, Dr. Gray would score a 1, performs less than
25 percent of the task on the FIM item of dressing lower body.
The logical extension of this assessment of Dr. Gray is that he
could not leave his house or go to work unless he had
assistance to get dressed. Clearly, work is important to Dr.
Gray and others with disabilities. The gab in our understanding
of why some people with disabilities work while others do not
require that we move beyond the can do measures to a holistic
social model of disability.
Using a social model of disability assessment can focus on
what people with disabilities do and the factors that help them
do activities. These measures assess what people with
disabilities do and what their quality of participation in
activities, not their health-related quality of life. The
construct of participation includes the evaluation of
engagement in activities that are felt important; the degree of
choice--when, where, how and the satisfaction derived from that
participation in an activity. The social model also postulates
that the environmental context can create barriers of
facilitators of participation by people with disabilities.
Using this approach, service programs could determine what
facilitators are useful to improve participation of specific
activities.
For example, I work with Paraquad, a federally funded
independent living center in St. Louis has shown that outcome
measures are needed that focus on the specific and general
goals of the services offered.
The Olmsted Supreme Court decision that supported the right
of people with disabilities to choose where they live resulted
in many State Medicaid programs funding consumer-directed
personal assistance services. To examine the effects of this
program. We asked consumers to answer questions on the quality
of the services provided; for example, the times the attendant
was late or the choice and satisfaction with the attendant.
To assess the influence of the personal assistant services
on the consumers' quality of participation, we asked those
receiving the services if they participated in community
activities more often and how they evaluated that
participation. The ``take-home'' lesson from our experience in
the use of outcome measures is that there is a need to include
questions on the specific program services, as well as the
effects of the consumers' community participation. Such
measures require establishing baselines and then frequent
subsequent assessments to examine program effectiveness.
Most of the Federal statistical data is demographic and
normative. Federal agencies report the number of people with
disabilities that are eligible or enrolled in the services.
However, Federal disability data is inadequate to identify the
dynamics of disability. Federal disability statistics are
largely derived from household surveys and individual level of
administrative records. As a result, a vast majority of
research and policy discussions derived from these data treat
disability as a one-dimensional personal phenomena, while
ignoring the environmental components of a disability.
The existing data cannot show a relationship between
service provided and the beneficial changes in the lives of
people with disabilities. To assess change, criterion-based
assessments are needed, rather than status relative to general
population. To report that unemployment rate of a person with
disabilities has remained stable while the same rate for the
general population has risen might be a misleading indicator of
beneficial change based on normative criteria. Another
consideration is that many consider disability to be a one-
dimensional construct.
As an example, the level of disability of a person is
whether a person can or cannot do an activity, such as dressing
or bathing. According to the World Health Organization's
International Classification of Functioning, Disability and
Help, or the ICF, disability is an umbrella term for
impairments, activity limitations and participation
restrictions. The ICF defines activity as the execution of a
task by an individual. Activity limitations are difficulties an
individual may have in executing activities. The ICF further
defines participation as involvement in life situation. And
participation restrictions are problems that an individual may
experience in that involvement. The aggregate of activities
defines a life situation. Employment is a life situation
defined by its job duties. Participation restrictions in
employment can be the lack of transportation, accessible
environment or education. The key to understanding disability
requires the examination of interventions that enhance an
individual's capacity to do activities and the implementation
of environmental facilitators that result in the full
participation of people with disabilities.
In summary, we would like to offer three suggestions to
improve the adequacy of data that serve people with
disabilities. One of the most often used national surveys is
the National Health Interview Survey. We recommend that this
survey be modified and reissued, having the diagnostic
categories who allow this function-based survey to be linked to
the ICF. Also adding questions on participation and
environmental context will also link the survey to the ICF.
Second, data used for program evaluation should be quite
criterion-referenced, based on the goals of the program. The
evaluation of progress should be referenced to valid and
reliable baseline measures. After implementation of program
services, subsequent assessments can establish program
effectiveness.
And third, data used to assess people with disabilities
should be multi-dimensional, using scales that span the
barriers of facilitators to full participation, a tenet of the
American with Disabilities Act. Compliance with this tenet
mandates the measurement of a variety of dimensions of
disability, including capacity, participation and the
environment. Thank you.
[The prepared statement of Dr. Hollingsworth follows:]
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Mr. Clay. Thank you, Dr. Hollingsworth. And let me thank
the entire panel for their testimony. We will now proceed with
the Q and A period. Excuse me. OK, we've been notified that the
Capitol Police, because of the storm, are now evacuating all
hearing rooms and asking everyone to proceed to the hallways.
So we will take a recess and hopefully bring you back for
questioning. Thank you.
[Recess.]
Mr. Clay. The subcommittee will come to order. I would like
to start the questioning off with Congressman Coelho.
Congressman, this subcommittee has jurisdiction over
information policy in the Federal Government. What are some of
your suggestions for how Congress might proceed with
establishing the coordinating entity? What are some of the
facts and issues that need to be considered?
Mr. Coelho. Well, I think the first thing, Mr. Chairman, is
that we finally have, after 10 years, an agreement as to the
six questions. And I think if we can get that implemented
governmentwide at least, we will have a foundation to get
started on.
Nothing is perfect. I know people would like better
definitions and they would like lots of different things, but
we've got to get started. Nobody has an idea of how many people
there are who have disabilities. We have rough estimates, but
we don't have any good numbers. And I think we just got to get
these six questions asked across the board. It's going to take
some effort. I think this committee, this subcommittee, would
be able to play a big role in making sure that OMB does that.
And then as we move along then to improve the process, just
like they did with this instance, with everything else. But we
need to get started.
We have been trying to do this for several decades and
we've never been able to get it done. Finally we're making some
progress. And that's my strong, strong position. I mean, you
can take, for example, the EEOC requires of all employers that
have 100 employees or more that they collect and report the
make-up of their work force. That doesn't include people with
disabilities. Why not? There's a lot of things like that would
be helpful for us to gather information to better serve people
with disabilities, but also to monitor what is being spent, how
it's being spent and so on. And I think that there's a lot of
times GAO is, of course, saying, you've got to do X, Y and Z. I
don't disagree with what GAO is saying. But the Congress is the
one who legislates what each of these programs are supposed to
do. And each of these programs have to comply with what
Congress wants, not what some survey says. And so I think
getting data is the critical thing, just absolutely critical,
and you got to start step by step.
Mr. Clay. Would you recommend using the six questions on
the American Community Survey as the foundation for
governmentwide questions on people with disabilities?
Mr. Coelho. Absolutely. And I would do it on every survey
that asked the basic questions about sex and race and so forth.
Every survey that does that, I would have OMB insist that the
six questions be included.
Mr. Clay. Can you tell the subcommittee what insight these
questions might provide on the quality of life of people living
with disabilities?
Mr. Coelho. I think first off, Mr. Chairman, that we would
get a better idea of the numbers that do exist out there. And
then as you well know, as being in charge of the census and are
overseeing the census--and I had the pleasure of doing that for
a period of time in the monitoring board, the data that is
collected, and you can get it from different regions of the
country and so forth, is tremendous as long as you start
collecting it. And I think one of the problems is that data is
collected but it isn't effectively used. And so there's two
parts to this whole thing, is collecting it and using it. And
so that if it is effectively used we can get all kinds of
information of where people are living, what their different
types of disabilities are, what we need to be doing in
different parts of the country to be of help and to be of
assistance. It's just basic information that we don't have
today. We assume we know but we don't know.
Mr. Clay. And for the record, OMB has submitted written
testimony and this committee will followup with questions of
them, and we will include your recommendations in those
questions.
Mr. Coelho. Thank you Mr. Chairman.
Mr. Clay. You're very welcome. You also note that despite
the difficulty in defining disabilities, statistical agencies
have been able to get started on survey questions. Have they
applied any practices that might be of use to Federal agencies?
Mr. Coelho. Well, I think that if you start with that
basic, those basic questions, and you start with that basic
data, it will be used to all Federal agencies. And so I'm a big
advocate that you got to start somewhere and you got to start
with a basic platform. And if you don't then nothing else
matters. But you've got to start with a platform. And once you
start getting that then you can build on it. And I don't think
the six questions are absolute or the six questions are
something that you're going keep forever, but I think you've
got to start somewhere. And those six questions have been
debated and tossed around and every little word was dissected
for 10 years.
Let's get started on it, let's move it across the board.
And then let's get moving. But now that those six questions
have been established, let's get it across all the surveys and
then let's have the governmental agencies start using them.
Mr. Clay. Thank you so much for your responses.
Dr. Bryant, let me go to you. Some of the challenges that
Federal agencies face in collecting data run across agencies
and across demographic groups. One of the problems is getting
people to respond to surveys. Can you speak to the nonresponse
rate as it relates to the disabled community and steps agencies
can take to improve response?
Ms. Bryant. Mr. Chairman, I don't have an accurate number,
but it is less than 50 percent. And just giving you an example,
because of some of the projects I've been involved in--for
example, getting information back from the visually impaired
and blind, putting it in the formats that it needs to be in,
but for whatever reason we never get more than 23 percent to 30
percent back of the surveys. If we send them out in the
necessary format, if we call them on the telephone it may be
apprehension in dealing with the interview. Putting it in the
proper format and then being able to read braille on what
level, 1, 2 or 3. So there are problems in collecting
information or collecting data because of the suspicion
sometimes of these individuals who are not on rolls and do not
participate in receiving services. There are those who are
suspicious of services in general. And then there are those who
do not have the surveys and questionnaires in an accessible
format whereby they can respond privately. Because sometimes
when a third party or a second party is involved in responding,
to helping someone respond to a survey, they don't answer or
don't answer as honestly.
Mr. Clay. You know, you recommended that a diverse
coalition be assembled to further explore conclusions and
recommendations on data collection. And that included in the
coalition must be national organizations that focus on
multicultural disabilities and diverse disabilities. It is
important to have those views represented on any committee that
considers recommendations.
Can you tell the committee in your professional opinion the
void that is created when these groups are not represented and
the benefits of having them at the table when decisions are
being made----
Ms. Bryant. The void is we have mentioned, or someone
mentioned earlier, that there are common similarities but there
are cultural differences. And just starting from--basic
individuals from various cultures see disabilities differently.
First of all, they define them differently. And so when you're
working from that premise you're going to get information from
different perspectives. And so you need to understand, first of
all, that global cultural perspective, and then how the
individual within that culture with the disability sees the
world or sees him or herself.
Now, the benefits would be if we are trying to find out
what indicators enhance quality of life, you have to understand
that person within his or her culture context with the
disability. So that's why it's important that we include
individuals from, quote, minority, racial ethnic groups with
disabilities.
Mr. Clay. OK. Thank you for that response.
Dr. Pound, NCD recommended that NIDRR develop a fuller set
of indicators that are important to people with disabilities.
An emphasis was placed on moving beyond using ability to work
as the determining factor in setting policy.
What other indicators should be used to assess the quality
of life of people living with disabilities?
Ms. Pound. Well, the NCD report actually noted 18
indicators and regrouped them by the domains I mentioned, like
education, employment, health, etc. Some of those might be
things like employment rate, employment rate by attainment of
education, median annual earnings for full-time for your
employees, meeting annual earnings by education status, skip
down to some, maybe health might be obesity, smoking; others in
the area of financial status would be things like median
household income or poverty status; leisure recreation may be
participation in leisure physical activities, personal
relationships might be social emotional support available,
marital status; crime and safety may be the crime rates per
1,000, like property crime and violent crime. And actually what
would determine in those is that there's data currently
available to gather this information and present it annually to
figure out how we're doing to compare year to year.
Also I might mention our stakeholders in those focus groups
didn't mention a number of other things that others have
mentioned here today that are more subjective but are very
important such as choice, spontaneity, aspirations,
empowerment, things of that nature that relate more directly to
quality of life.
Mr. Clay. What are some of the challenges agencies might
face in implementing NCDs and recommendations?
Ms. Pound. Well, I think traditionally a lot of what has
been said, most agencies are not going to go do this on their
own, they're going to need some directive to do it, and/or some
funding to do it. And ideally, there would need to be a
coordinating body, hopefully something at the level of the
Interagency Coordinating Council; revive that to get the people
at that level to buy in and have some structured supervision of
how it was to be done. I don't think this effort is going to go
further without some kind of a mandate in funding to push it
forward.
Mr. Clay. What role could OMB play in facilitating the
collection of data across programs? Any thoughts on that or
anyone on the panel? Ms. Pound, no thoughts on that?
Ms. Pound. I'm thinking. I would rather see the testimony
before I provide that.
Mr. Clay. All right. Let me give you another one, then.
What would prohibit the collection of data that would allow
data users to assess how well individuals with disabilities are
faring? What would prohibit the collection of data that would
allow data users to assess how well individuals with
disabilities are faring? Are there any obstacles now?
Ms. Pound. Yeah. I think it's pretty obvious that there
are. Most agencies aren't going to do that on their own. If
they do it, then they do it differently, one to another. That's
what we found. Like they do something that they believe is
useful for their needs, but it doesn't necessarily work across
agencies and for disability populations as a whole.
Mr. Clay. Thank you for your responses.
Ms. Hollingsworth, you talk about the great work that
Paraquad in St. Louis is doing to establish outcome measures.
Could you tell us a little more about any instruments you are
working on that could be used in models for collecting Federal
data?
Mr. Hollingsworth. It would be difficult to take, as it is
now, what we're doing at Paraquad to the national level without
a lot of work on establishing the reliability or validity of
items. I think one of our problems is now we're collecting
basically 01 kind of data; a person is blind or is not blind.
We're not getting the data on how this disability influences
our participation in activities of daily living.
To answer questions like that requires more than just a 01
kind of a response. So it's the same kind of questions that we
see in the political poll; strongly agree, strongly disagree,
agree. We all answer that agreement question differently. And
to come up with a reliable response set to these kinds of
questions is the task.
Mr. Clay. How could we measure the effectiveness of Federal
programs in improving the status of people with disabilities?
Mr. Hollingsworth. I suggest that we establish some valid,
reliable, baseline measures before services are implemented;
or, at a particular time, if the services are already in place,
so that we can measure change. And that's fraught with
difficulties of reliability and validity. Changed scores are
difficult. Knowing just the number of people is important. It's
an important question. But how people view the participation in
major life activities is important. And what facilities those
activities--can we use the information on a successful employee
to help train people coming back from Iraq with disabilities?
Mr. Clay. You recommended that the national health
interviews survey be modified and reissued. What modifications
would you suggest?
Mr. Hollingsworth. One of the recommendations of the
National Council of Disability was to include disability, and I
would suggest even subgroups of disability, so that a person
with a spinal chord injury might be a paraplegic, a
quadriplegic or a complete incomplete. These are all
subgroupings. And that information gives us a little bit better
detail. But I also think we need to get in those questions. It
will probably have to be a supplemental to end this, but
functioning in major life activities.
Mr. Clay. Thank you. Thank you for your response. Let me
thank this panel. Congressman.
Mr. Coelho. Mr. Chairman, there's one thing that I would
like to just say, because I think there's been a huge change
going on in the disability community. For so many years
Congress and others have treated the disability community
paternalistically; let's give you X and then you go away. And
what's happening in the disability community is that we want
our quality of life, we want to participate, we want to be
treated like everybody else, we want to be involved. And so
what you're hearing a lot of is that we want to be part of
everything that is going on. And that's why we want the
statistics to show what is happening to us. We just don't want
a handout. We want to participate. We want to be involved. And
so that's why these statistics become critically important, is
so that we can be engaged and be involved. And that's why it's
important for the Congress to treat us as equals, to let us
participate, let us be engaged, let us be involved. And that's
why I think it's so important that you're holding these
hearings, that you're leading this fight, and we appreciate it
very much.
Mr. Clay. Thank you so much. And thank the entire panel.
You have certainly made the case for the disabled community for
us to be inclusive. And I found this hearing to be insightful
for me personally.
I want to thank you all and panel I for their participation
in this hearing. I look forward to working with this community
as we go down the road. Thank you, and that concludes this
hearing. Hearing adjourned.
[Whereupon, at 3:55 p.m., the subcommittee was adjourned.]
[Additional information submitted for the hearing record
follows:]
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