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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

(II)

COMMITTEE ON OVERSIGHT AND GOVERNMENT REFORM

HENRY A. WAXMAN, California, Chairman

EDOLPHUS TOWNS, New York

PAUL E. KANJORSKI, Pennsylvania

CAROLYN B. MALONEY, New York

ELIJAH E. CUMMINGS, Maryland

DENNIS J. KUCINICH, Ohio

DANNY K. DAVIS, Illinois

JOHN F. TIERNEY, Massachusetts

WM. LACY CLAY, Missouri

DIANE E. WATSON, California

STEPHEN F. LYNCH, Massachusetts

BRIAN HIGGINS, New York

JOHN A. YARMUTH, Kentucky

BRUCE L. BRALEY, Iowa

ELEANOR HOLMES NORTON, District of

Columbia

BETTY MCCOLLUM, Minnesota

JIM COOPER, Tennessee

CHRIS VAN HOLLEN, Maryland

PAUL W. HODES, New Hampshire

CHRISTOPHER S. MURPHY, Connecticut

JOHN P. SARBANES, Maryland

PETER WELCH, Vermont

——— ———

TOM DAVIS, Virginia

DAN BURTON, Indiana

CHRISTOPHER SHAYS, Connecticut

JOHN M. MCHUGH, New York

JOHN L. MICA, Florida

MARK E. SOUDER, Indiana

TODD RUSSELL PLATTS, Pennsylvania

CHRIS CANNON, Utah

JOHN J. DUNCAN, JR., Tennessee

MICHAEL R. TURNER, Ohio

DARRELL E. ISSA, California

KENNY MARCHANT, Texas

LYNN A. WESTMORELAND, Georgia

PATRICK T. MCHENRY, North Carolina

VIRGINIA FOXX, North Carolina

BRIAN P. BILBRAY, California

BILL SALI, Idaho

JIM JORDAN, Ohio

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

CAROLYN B. MALONEY, New York

JOHN A. YARMUTH, Kentucky

PAUL W. HODES, New Hampshire

MICHAEL R. TURNER, Ohio

CHRIS CANNON, Utah

BILL SALI, Idaho

TONY HAYWOOD, Staff Director

(III)

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

(1)

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.

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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.

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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.

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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.

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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 71⁄2 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.

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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 qualitativequantitative, objective-subjective—there is validity in that whole

37

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 providVerDate 11-MAY-2000 13:40 Feb 17, 2009 Jkt 000000 PO 00000 Frm 00041 Fmt 6633 Sfmt 6633 C:\DOCS\46430.TXT KATIE PsN: KATIE
38

ing 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 publicprivate 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.

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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 DoleShalala 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.

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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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Mr. 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 experiVerDate 11-MAY-2000 13:40 Feb 17, 2009 Jkt 000000 PO 00000 Frm 00050 Fmt 6633 Sfmt 6633 C:\DOCS\46430.TXT KATIE PsN: KATIE
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enced 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

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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 perVerDate 11-MAY-2000 13:40 Feb 17, 2009 Jkt 000000 PO 00000 Frm 00052 Fmt 6633 Sfmt 6633 C:\DOCS\46430.TXT KATIE PsN: KATIE
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sons 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 indepth 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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Mr. 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

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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

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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.

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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 qualityof-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 ‘‘disabilVerDate 11-MAY-2000 13:40 Feb 17, 2009 Jkt 000000 PO 00000 Frm 00069 Fmt 6633 Sfmt 6633 C:\DOCS\46430.TXT KATIE PsN: KATIE
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ity,’’ 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 proVerDate 11-MAY-2000 13:40 Feb 17, 2009 Jkt 000000 PO 00000 Frm 00075 Fmt 6633 Sfmt 6633 C:\DOCS\46430.TXT KATIE PsN: KATIE
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vided; 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.

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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?

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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

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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

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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?

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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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