[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


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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

                              ----------                              
                                                                   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?

                              ----------                              


                        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.
    [The information referred to follows:]

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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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