Highlights of a Forum: Modernizing Federal Disability Policy
(03-AUG-07, GAO-07-934SP).

Economic, medical, technological, and social changes have
increased opportunities for persons with disabilities to live
with greater independence and more fully participate in the
workforce. In addition, social and legal changes have promoted
the goal of greater inclusion of persons with disabilities in
the mainstream of society. However, GAO's reviews of the largest
federal disability programs indicate that such programs have not
evolved in line with these larger societal changes and,
therefore, are poorly positioned to provide meaningful and
timely support for persons with disabilities. Furthermore,
program enrollment and costs for the largest federal disability
programs have been growing and are poised to grow even more
rapidly in the future. For these reasons, GAO added modernizing
federal disability to its high-risk areas in January 2003. GAO
convened this forum to address some of the key issues related to
modernizing federal disability policy. The forum brought
together a diverse array of experts, including employers;
advocate groups, researchers, and academia; and federal
officials. Comments expressed do not necessarily represent the
views of any individual participant or the organizations they
represent, including GAO. However, GAO does make some concluding
observations.
-------------------------Indexing Terms------------------------- 
REPORTNUM:   GAO-08-934SP						        
    ACCNO:   A73892 						        
  TITLE:     Highlights of a Forum: Modernizing Federal Disability Policy							 
     DATE:   08/03/2007 
  SUBJECT:   Aid for the disabled
             CG Forum
             Disability benefits
             Employee incentives
             Employees with disabilities
             Employment assistance programs
             Employment of the disabled
             Federal employee disability programs
             Federal social security programs
             GAO High Risk Series
             Persons with disabilities
             Policy evaluation
             Program evaluation
             Veterans employment programs

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GAO-07-934SP



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GAO Highlights: 

Highlights of GAO-07-934SP, a GAO forum. 

Why GAO Convened This Forum: 

Economic, medical, technological, and social changes have increased 
opportunities for persons with disabilities to live with greater 
independence and more fully participate in the workforce. In addition, 
social and legal changes have promoted the goal of greater inclusion of 
persons with disabilities in the mainstream of society. However, GAOï¿½s 
reviews of the largest federal disability programs indicate that such 
programs have not evolved in line with these larger societal changes 
and, therefore, are poorly positioned to provide meaningful and timely 
support for persons with disabilities. Furthermore, program enrollment 
and costs for the largest federal disability programs have been growing 
and are poised to grow even more rapidly in the future. For these 
reasons, GAO added modernizing federal disability to its high-risk 
areas in January 2003. 

GAO convened this forum to address some of the key issues related to 
modernizing federal disability policy. The forum brought together a 
diverse array of experts, including employers; advocate groups, 
researchers, and academia; and federal officials. Comments expressed do 
not necessarily represent the views of any individual participant or 
the organizations they represent, including GAO. However, GAO does make 
some concluding observations. 

What Participants Said: 

Forum participants were asked to discuss over three sessions, whatï¿½s 
working well and what needs to be improved in federal disability 
programs, how to strengthen partnerships and coordination for 
modernizing programs, and ways to modernize measures of program 
success. Participants also considered the next steps to achieving a 
21st century disability policy. 

(1) Whatï¿½s Working Well and What Needs Improvement? 

* Some partnerships and collaborations are helping to improve services 
such as income replacement, health care, and work assistance, as well 
as research on disability issues. 

* There is no federal system for disability that coordinates the many 
different disability programs and services, and no comprehensive 
lifetime picture of the needs of individuals with disabilities. 

(2) Strengthening Partnerships and Coordination 

* More coordination and leadership of disability programs are needed. 

* Partnerships with and incentives for the private sector are needed to 
offer and maintain employment for individuals with disabilities. 

* States and localities are key partners in delivering services to 
individuals with disabilities. 

(3) Modernizing Measures of Success 

* Disability populations and definitions vary. 

* Data collection on people with disabilities needs to be improved. 

* Multiple indicators are needed to measure economic success as well as 
quality of life for people with different disabilities. 

Participants suggested a number of steps that could be taken by 
stakeholders to inform the debate to help move current policy toward 
achieving a 21st century disability policy. Some participants suggested 
evaluating work incentives and disincentives and the coordination 
efforts between public and private sector disability entities; others 
suggested developing a definition of disability and standard language 
that could be shared across related programs; and many suggested 
establishing various program outcome indicators and data reporting 
requirements to track them. 

Concluding Observations
To the extent that federal disability programs are aligned with 21st 
century realities, benefits can be achieved for individuals with 
disabilities, business, and government. Solutions are likely to require 
fundamental changes, including regulatory and legislative action. 
Without federal leadership at this critical time to lead this 
transformation, there could be fewer options in the future available to 
policymakers seeking to improve federal disability programs. As the 
country moves forward, the fiscal implications of any new actionsï¿½as 
well as the cost of keeping the status quoï¿½must be considered. 

[Hyperlink, http://www.gao.gov/cgi-bin/getrpt?GAO-07-934SP]. 

To view the full product, including the scope and methodology, click on 
the link above. For more information, contact Daniel Bertoni at (202) 
512-7215 or [email protected]. 

[End of section] 

Comptroller General's Forum: 

United States Government Accountability Office: 

GAO: 

August 2007: 

Highlights Of A GAO Forum: 

Modernizing Federal Disability Policy: 

GAO-07-934SP: 

Contents: 

Letter: 

Introduction from the Comptroller General of the United States: 

What Is Working Well and What Should Be Improved? 

Strengthening Partnerships and Coordination: 

Modernizing Measures of Success: 

Suggested Next Steps for Achieving a 21st Century Disability Policy: 

Concluding Observations: 

Appendix I: List of Participants18: 

Appendix II: Agenda20: 

Appendix III: Contacts and Staff Acknowledgments21: 

Related GAO Products22: 

Tables: 

Table 1: Individual Responses to "What Is Working Well in Federal 
Disability Programs?: 

Table 2: Individual Responses to "What Needs Improvement in Federal 
Disability Programs?: 

Abbreviations: 

ADA: Americans with Disabilities Act: 
DI: Disability Insurance: 
DOD: Department of Defense: 
SSA: Social Security Administration: 
SSI: Supplemental Security Income: 
TIRR: The Institute for Rehabilitation and Research: 
VA: Department of Veterans Affairs: 
VR: Vocational Rehabilitation: 
WIA: Workforce Investment Act: 

United States Government Accountability Office: 
Washington, DC 20548: 

Introduction from the Comptroller General of the United States: 

Economic, medical, technological, and social changes over the past 
several decades have increased opportunities for individuals with 
disabilities to live with greater independence and more fully 
participate in the workforce. For example, the economy has shifted 
toward service-and knowledge-based jobs that may allow greater 
participation for some persons with physical limitations. Also, 
advances in medicine and assistive technologies--such as improved 
treatments for mental illnesses and advanced wheelchair design--afford 
greater opportunities for some persons with disabilities. In addition, 
social and legal changes have promoted the goal of greater inclusion of 
persons with disabilities in the mainstream of society, including 
adults at work. For example, the Americans with Disabilities Act (ADA) 
supports the full participation of persons with disabilities in society 
and fosters the expectation that persons with disabilities can work and 
have the right to work. In 2001, the President announced the New 
Freedom Initiative, a set of guiding principles and initiatives aimed 
at improving the integration of persons with disabilities in all 
aspects of society, including employment. 

However, GAO's reviews of the largest federal disability programs 
indicate that such programs have not evolved in line with these larger 
societal changes and, therefore, are poorly positioned to provide 
meaningful and timely support for persons with disabilities. 
Furthermore, program enrollment and costs for the largest federal 
disability programs have been growing and are poised to grow even more 
rapidly in the future, contributing to the federal government's large 
and growing long-term structural deficit. For example, from 1996 to 
2006, the number of persons with disabilities receiving benefits under 
the Social Security Administration's (SSA) Disability Insurance (DI), 
and Supplemental Security Income (SSI) programs and the Department of 
Veterans Affairs' (VA) Disability Compensation and Pension program 
increased by 42 percent, 16 percent, and 7 percent respectively. At the 
same time, the total inflation-adjusted cash benefits for these 
programs increased by 63 percent, 18 percent, and 44 percent, 
respectively. Moreover, these disability programs are poised to grow 
even more as baby boomers reach their disability-prone years. This 
program growth is exacerbated by the low rate of return to work for 
individuals with disabilities receiving cash and medical benefits. In 
addition, the projected slowdown in the growth of the nation's labor 
force has made it more imperative that those who can work are supported 
in their efforts to do so. In 2003, GAO designated modernizing federal 
disability programs as a high-risk area because of challenges such as 
these.[Footnote 1] 

GAO identified over 20 federal agencies and almost 200 federal programs 
that either wholly or partially serve persons with disabilities. These 
programs provide a wide range of assistance such as employment-related 
services, medical care, and monetary support. Multiple agencies run 
programs that provide similar types of assistance, but these programs 
often serve different populations of persons with disabilities because 
of varying eligibility criteria. 

GAO convened this forum on April 17, 2007, to address issues related to 
modernizing federal disability policy. The forum brought together a 
diverse array of experts, including federal officials; representatives 
from advocacy groups, researchers, and academia; and employers. Forum 
participants discussed what is working well in federal disability 
programs and what should be improved, explored issues we identified as 
critical based on prior work such as how to strengthen partnerships and 
coordination for modernizing disability programs and how to modernize 
measures of program success, and closed with a discussion on where to 
prioritize the next steps to achieving a 21st century disability 
policy. (See app. I for a list of forum participants and app. II for 
the forum's agenda.) This forum was designed for the participants to 
discuss these issues openly, without individual attribution, in order 
to facilitate a rich and substantive discussion of these issues. 

This report summarizes the ideas and themes that emerged at the forum, 
the collective discussion of participants, and comments received from 
participants based on a draft of this report. The forum comments 
summarized in this report do not necessarily represent the views of any 
individual participant or the organizations that these participants 
represent, including GAO. However, GAO does make some concluding 
observations about the need to modernize federal disability policy. 

I want to thank all the forum participants for taking the time to share 
their knowledge, insights, and perspectives. We at GAO will benefit 
from these insights as we carry out our work for the Congress and the 
country. 

I look forward to working with the forum's participants on this and 
other issues of mutual interest and concern in the future. 

Signed by: 

David M. Walker: 
Comptroller General of the United States: 

August 3, 2007: 

What Is Working Well and What Should Be Improved? 

The forum opened with the Comptroller General asking the participants 
what they thought was working well in federal disability programs and 
what they thought needed to be improved. In response to the question 
about what was working well, some participants stated that some 
partnerships and collaborations were helping to improve services such 
as income replacement, health care, and work assistance, as well as 
research on disability issues. Some of these partnerships involved 
federal programs working together to help individuals, while others 
involved federal and local entities or federal and private sector 
entities. In response to areas needing improvement, some participants 
stated that there should be a federal system for disability that 
coordinated the many different disability programs and services, and 
that there was no comprehensive lifetime picture of the needs of 
individuals with disabilities. Also, many participants agreed that 
there was a need for more and better indicators to measure the success 
of disability programs. Participants made individual comments on 
aspects they believed were working well in federal disability programs 
and aspects that need improvement, as shown in tables 1 and 2. The 
tables list individual comments and as such, neither represent a group 
consensus nor the full range of what is working well or what should be 
improved in federal disability programs. 

Table 1: Individual Responses to "What Is Working Well in Federal 
Disability Programs?: 

Partnerships and Coordination; 
* Federal partnerships that result in agreement on policy and pooling 
of resources; 
* Programs such as The Department of Labor's New Freedom Initiative 
Award that get private sector and other leaders together to commit to 
more hiring of persons with disabilities and to discuss issues; 
* Programs such as the National "School to Work" joint initiative 
between Labor and Education, which pooled funding resources and created 
a database for research; 
* Research demonstration projects that collaborate with other 
organizations; 
* The practice of using states as a laboratory for innovative programs. 

Program Design and Benefits; 
* Change in public policy paradigm over last 10-15 years that emphasize 
equality of opportunity, self-determination, economic self-sufficiency 
and independent living; 
* DI and SSI programs provide needed income replacement and Medicare 
and Medicaid provide needed health care; 
* The annual adjustment of substantial gainful activity earnings 
amounts for inflation; 
* VA's new process and standardized criteria for rating disabilities at 
discharge; 
* Medicaid, home-and community-based services linking independent 
living and work assistance. 

Work Facilitators; 
* SSA's program to help individuals with benefits planning and 
accessing return to work programs; 
* Two science-based best practices: (1) on-the-job training and (2) 
school-based work for transitioning youth from school to jobs; 
* Assistive technology; 
* Higher education. 

[End of table] 

Table 2: Individual Responses to "What Needs Improvement in Federal 
Disability Programs?: 

Program Orientation; 
* There is no federal system for disability to ensure that policy, 
services, and support are in sync and come from all levels of 
government; 
* We need a paradigm shift from models that focus on programs and 
policies, to a model that focuses on the needs of individual customers; 
* Earlier intervention for youth with disabilities to prepare them for 
the workforce; 
* Consideration for how to handle often chronic and frequently variable 
conditions such as mental illness. 

Program Design and Benefits; 
* Better work incentives are needed for individual beneficiaries and 
employers; 
* Explore eliminating the linkage between health care and cash 
benefits. Many people are attempting to get on disability because they 
need health care; 
* Programs lack a return-on-investment orientation. Also, they do not 
allow for investment or accumulation of assets, and so people are kept 
at the same level of economic security; 
* The transition from the Department of Defense (DOD) to VA is layered 
in bureaucracy. 

Evaluation Information; 
* Return-to-work models do not look at how to help people remain at 
work; 
* We need a comprehensive picture of individual needs for persons with 
disabilities--a picture that covers an individual's life span and 
differs by age group; 
* Need more and better indicators and disability outcome data. Without 
it, evidence-based approaches are not possible. The federal government 
has established data requirements from state and local entities, but 
neither collects or reports on the data; 
* More input from people who are on these programs (SSI and DI) 
themselves to know what is working well or not. 

[End of table] 

Strengthening Partnerships and Coordination: 

Forum participants pointed out that maintaining partnerships and 
coordinating services to persons with disabilities is critical to 
success. Key challenges to achieving these goals are the absence of a 
coordinated government disability policy, the need to establish public- 
private partnerships with incentives for the private sector, the 
current role of the Vocational Rehabilitation (VR) Program, and 
providing education where appropriate to prevent work incapacity 
according to the participants. 

Coordinated Government Disability Policy Needed: 

While participants noted that many departments achieve good outcomes, 
they also acknowledged that there is fragmentation and duplication, and 
cited the need for more coordination among disability programs. One 
participant said we do not have a federal system for disability and 
insufficient thought has been given to what the future system should 
look like. Disability issues are complex and cut across public domains, 
including transportation, housing, assistive technology, and community-
based services, and only integrated services make functioning possible, 
according to one participant. Similarly, a participant suggested the 
need for someone to be responsible for the big picture. Another 
participant thought coordination should aim to create a federal, state, 
and local system to ensure that policy, services, and supports are 
synchronized. This system would require strong leadership, and also 
needs one nexus in the executive branch and one committee of 
jurisdiction in Congress or else it would be impossible to manage. 
Currently, the participant further argued, there are too many 
congressional committees involved in this issue. 

Another participant added that there is a need to understand how well 
state and federal programs work together, and another cautioned that 
the goal should not be to federalize all disability programs. In fact, 
some participants underscored the importance of working with the state 
and localities. While one participant took issue with the use of state 
employees and state agencies to determine eligibility for federal 
benefits, others noted that states are critical to helping facilitate 
services to local communities, which in turn get services to 
individuals. One participant said that some local communities have 
found ways to manage the plethora of federal and state program 
requirements to address transportation and other needs of the elderly. 
Some best practices have been identified by the National Council on 
Disability, including a partnership called Creating Livable 
Communities. 

Some participants cited the need for better coordination of services 
for veterans. One participant said the transition from DOD to VA's 
system is overly layered with bureaucracy, and despite the attempts to 
educate service members, the transition process has become adversarial. 
According to this participant, the system needs to be less adversarial 
and more advocacy-oriented for the service members. Another participant 
noted the need for better coordination between SSA and VA for veterans 
as well. There are also incentives for veterans who lose their health 
care when they transition to retirement to try to remain within the VA 
health care system, according to one participant. Veterans have the 
incentive to stay in the health care system, the participant said, 
because their access to the system gives them access to their 
prescription drugs. Finally, one participant cited the example of a 
small DOD program--the Marine for Life-Injured Support Program--that 
this participant believed has been successful at coordinating services 
to help seriously injured marines and sailors. The program brings 
together supports from different federal agencies and to date has 
helped 25 seriously injured individuals, according to this participant. 

One participant stated that a paradigm shift is needed from a focus on 
programs and policies to a focus on the needs of individual customers 
throughout their lives. Fragmentation of services was not necessarily 
seen as bad by some participants as long as services are focused on the 
individual. Another advocated a system that is bottom-up, with strong 
case management, and each individual having an advocate. For example 
one participant said that Virginia has a "no wrong door" approach, 
which means that the first contacted agency takes on the role of 
advocate to get the needed supports for that individual. One 
participant expressed the need for a comprehensive picture of 
individual needs for persons with disabilities--a picture that 
seamlessly encompasses the transitions from childhood to adolescence to 
young adulthood to adulthood to retirement. 

On a similar note, one participant observed that there is a lack of 
coordination in support of children, even though childhood is where the 
greatest impact can be achieved within existing laws. This participant 
said that SSI has many beneficiaries under the age of 21 who have not 
participated in special education and noted that we have a 21-year 
spectrum when significant improvements could be made that would affect 
the entire life of a person with disabilities if the coordination of 
resources had greater emphasis. More coordination is needed among SSA; 
Education; and the Early Periodic Screening, Diagnosis, and Treatment 
Program, the participant said. 

Public-Private Partnerships and Incentives for the Private Sector 
Needed: 

Many participants noted the need for partnerships with employers. One 
participant said partnerships can be established by exposing employers 
to persons with disabilities who are looking for work and exploring 
career opportunities. At the same time, such partnerships could expose 
youths with disabilities to mentors to keep their expectations and 
career aspirations high. A second participant claimed that private 
insurers have had more success than SSA at helping persons with 
disabilities find jobs, by building successful relationships with 
employers, often by adjusting premiums for both small and large 
employers. The participant suggested that these kinds of changes can be 
made easily to the existing disability systems. Also, the Department of 
Labor's employment and training supports available through the 
Workforce Investment Act's (WIA) one-stop system have developed 
relationships with the business community. This participant noted that 
there could be a way to enhance the existing system so that more 
resources are available to provide accommodations. One participant 
suggested that the way to encourage businesses to work with persons 
with disabilities is to give them information about what persons with 
disabilities and their families want. The business community has such 
information about teenagers and other groups of consumers, but 
businesses lack data about consumers among the disability community, 
according to the participant. 

The VA's Compensated Work Therapy Program was cited by one participant 
as an example of a successful work program. Under this program, the 
participant said, VA partners with companies to place veterans with 
disabilities in a competitive work environment and provides incentives 
for the employer to employ them. Further, the veterans' salaries are 
not counted against their benefit levels. This participant suggested 
that this program could be a possible model for providing work 
incentives for persons with disabilities more broadly if it can be 
successfully marketed to the wider private sector. Another participant 
cited the federal government as an example of an employer that could be 
doing more to employ persons with disabilities. This participant 
suggested that the federal government test different kinds of work 
supports to find out what works best. This information could then be 
disseminated to other employers. 

Demographics are creating a pressing need to maintain employment after 
disability. One participant observed that the baby boomers are 
approaching the prime age for disability onset and that government 
needs to provide incentives to employers to keep these employees. Also, 
one participant contended that after the boomers have retired, the 
population of workers with disabilities is not going to be severely 
reduced, as there is still a big population rising to the disability 
onset age group, due in part to immigration. A second participant 
agreed with the need for private sector employer incentives because 
retaining employees during the first 6 weeks of disability is a key 
concern. By maintaining the work connection, employees are kept in the 
private disability system and off DI and SSI. Another participant noted 
that employers have incentives to not retain employees who become 
disabled. The participant further argued that once that person becomes 
unemployed, it is very difficult for that person to go back to work and 
if the person needs health care, he or she may turn to SSI and DI to 
obtain it. This participant suggested that providing incentives to 
employers to keep their employees can be done in a way that does not 
cost a lot. 

Individuals may also need incentives to maintain work connections. One 
participant observed that changes are needed to encourage people to 
continue working past retirement age, and one way to do this would be 
to not tax retirement income and allow individuals to draw on 
retirement while working. Another participant maintained that SSI rules 
are out of date, noting that the current system may penalize 
individuals for trying to work by requiring them to make income 
projections and calculations that are difficult, and then levying 
overpayment charges on the individual if these calculations are 
incorrect. Getting assessed with an overpayment bill could be a huge 
disincentive to find work, and individuals may fear making a mistake, 
according to one participant. The participant said that SSA needs to 
remove disincentives and also support persons with disabilities' 
attempts to work. 

Vocational Rehabilitation Program's Role: 

Participants discussed the role of the VR Program in relation to the 
WIA. One participant stated that the WIA had contemplated a larger 
network of federal agencies that included VR, but it never really 
became incorporated into the WIA system. This participant's earlier 
work found that services were often misaligned with what people really 
want and what is needed to create an infrastructure that is responsive 
to what consumers and employers need. Currently, there are many 
entrenched bureaucratic cultures with lists of approved or mandated 
services and supports that may not match up with demand. 

Another participant observed that there are misconceptions regarding VR 
and its integration into the WIA system. Because rehabilitation is 
generally aimed at those with the most severe disabilities that require 
longer care, accessibility supports, and accommodations, the 
participant noted the severely disabled cannot be easily integrated 
into the WIA one-stop system, which serves persons without as well as 
with disabilities. This participant advised caution as we move toward 
integration with WIA to ensure those individuals with severe 
disabilities are not underserved. On the other hand, one participant 
was critical of VR, claiming that over time, it had received 
significant federal funding and served large numbers of SSA 
beneficiaries with questionable success. 

Programs That Provide Higher Education Can Improve Success of Some 
Persons with Disabilities: 

Participants agreed that higher education can be an important factor in 
the success of some, albeit not of all, persons with disabilities. One 
participant pointed out that the risk that medical issues become work 
impediments increases with age and also with the lack of education, and 
that higher education is an effective tool for preventing work 
incapacity. This participant noted that it is hard to succeed in 
today's workforce without a college education and that we need programs 
that help persons with disabilities--including veterans--get to 
college. Two other participants also agreed that higher education is an 
important factor in success but said that it might not be the best 
choice for everyone in all situations. One of these participants noted 
that the VA's Vocational Rehabilitation and Employment Program provides 
veterans with access to higher education benefits but observed that 
sometimes it is more important to emphasize return to work over 
education, especially in the first year after the onset of the 
disability, in part because the individual may be able to pursue 
education opportunities afterward. The second participant concurred 
with the importance of higher education to success, but, citing past 
research on computer skills, education, and other factors on return to 
work, noted that information technology presents major opportunities 
for bringing persons with disabilities into the workforce. 

Some persons with disabilities may need help getting access to 
education, and some may be denied access. One participant explained 
that while veterans with a disability rating of 10 percent or more 
receive access to vocational rehabilitation services, including higher 
education, through VA's Vocational Rehabilitation and Employment 
Program, veterans need more counseling to get through the maze of the 
benefit system. A second participant said some veterans may also be 
denied access to education and retraining because of structural issues 
with the program. For example, according to one participant, the 
Individual Unemployability Program treats a person with a disability 
rating of 60 percent and above the same as someone with a 100 percent 
disability rating and therefore does not offer that person a vocational 
assessment that could give him or her access to retraining services. 

Finally, one participant pointed out that training and education need 
to be targeted to job opportunities afforded by the new economy. While 
the relevance of training programs is very important, training someone 
for a job that is not available in the local economy does not achieve 
anything for that individual. 

Modernizing Measures of Success: 

Participants generally agreed that new and multiple indicators are 
needed to measure the success of disability programs, but a number of 
systemic issues would need to be addressed to achieve that goal. These 
issues include the differing definitions of disability across programs 
and the changing nature of disabilities among beneficiaries, the need 
for better data collection to measure success for persons with 
disabilities, and the need for multiple indicators to measure both 
economic as well as quality-of-life outcomes, according to 
participants. 

Disability Definitions Vary: 

Participants agreed that disability populations and disability 
definitions varied. One participant pointed out that there is no single 
definition of disability for all programs--there are definitions, for 
example, for veterans, older workers, and the general population. Two 
other participants stated there is a clear difference between veterans 
programs and programs for individuals whose disabilities are not 
related to military service. Another participant pointed out that the 
existence of multiple definitions for disability is not necessarily 
bad. For example, SSA's definition is fine for determining need for 
income supports but does not work for access to medical care or for in- 
home care and personal assistance. 

In addition to definitional differences, one participant noted the 
changing nature of disabilities that applicants and beneficiaries were 
experiencing. VA is seeing that mental disabilities can be more 
permanently disabling than many physical disabilities and that mental 
illness related to post-traumatic stress disorder can have a 
significant impact on earnings and employment of veterans. The 
participant said even those veterans who may have received a disability 
rating of 10 percent are experiencing a drop in earnings and employment 
at age 50. The participant added that VA is just learning about the 
impact of traumatic brain injuries on today's soldiers. 

Data Collection for Persons with Disabilities Needs to Be Improved: 

Many participants stated that data are collected, but not in a 
systematic format, making current data weak. One participant explained 
there are many sets of data to measure success of specific programs but 
there is no common data set because all different data sets are program-
specific. Also, there is no congressional requirement for one set of 
data or outcome measures. A second participant agreed, saying that 
current measures focus on programs and not people, and this is not 
beneficial. Also, a participant said it is difficult to identify the 
population of persons with disabilities because current surveys do not 
capture information about them. Another challenge to identifying this 
population, according to another participant, is that most major 
surveys primarily reflect household data, and persons with disabilities 
may not always live in what is typically defined as a household. 
Relatedly, another participant noted that Labor's Office of Disability 
Employment Policy is working with the Bureau of Labor Statistics to 
field test questions on disabilities that will be ready in a year and 
will be reflected in the unemployment data. Another participant 
observed that the most credible data always seem to be financial data, 
and that quality-of-life measures are much harder to collect. 

One participant asserted that researchers want to push the improvement 
of data collection forward, but the federal government is lagging. The 
Bureau of Labor Statistics' Current Population Survey and the Census 
Bureau's American Community Survey have started to improve data 
collection regarding disability, but they are going in different 
directions, according to this participant. This participant also said 
some work is being performed to develop core survey questions to 
identify persons with disabilities, and the federal government should 
adopt these core questions to capture this information. Other 
participants voiced dissatisfaction with the federal government's role 
in data collection as well. One participant noted that the federal 
government has established data requirements for state and local 
entities, but neither collects nor reports on the data. As a result, 
this participant argued, good data are not collected or shared, and the 
data are not helpful across different levels. Another participant 
observed that many federal agencies have antiquated hardware and 
particularly software programs that were designed for mainframe 
computers, and speculated whether funds could be redirected from 
Government Performance and Results Act activities to improving 
disability data collection. A third participant stated that without 
improving electronic medical evidence storage, evidence-based 
approaches to measure success are not possible. 

Finally, one participant disagreed with the other participants' 
criticisms and suggested that federal and state administrative data are 
a tremendous source of information about outcomes, but that privacy 
protection may be a greater impediment to sharing federal data. For 
example, this participant asserted that SSA collects unemployment data 
from the states that are the best source of earnings data. This 
participant saw the need to link more administrative data to survey 
data. 

Multiple Indicators Needed to Measure Success: 

Most participants agreed that multiple indicators were needed to 
measure the success of disability programs and that these measures 
should include not only economic measures such as income and 
employment, but quality of life measures as well. However, when 
disaggregating the indicators to the level of individuals with 
disabilities, some participants cautioned that care should be taken to 
avoid the creation of perverse incentives that treat persons with 
disabilities differently from the whole population. Some participants 
cited the need to determine the indicators of success for the entire 
population as well as for the subpopulation with disabilities. One 
participant offered four goals or outcome areas that should be 
optimized for everyone's status, with the importance of each varying 
from person to person. They are: 

* health and wellness, 

* choices or opportunities for productive activity separate from 
economic questions, 

* social interaction, and: 

* independence or autonomy and control over one's life. 

Other participants acknowledged the importance of looking at broader 
quality-of-life measures beyond employment outcomes. One participant 
explained that there are many individuals who are very ill or impaired 
and cannot work, and it is important to avoid the unintended 
consequences of devaluing these individuals by not measuring their well-
being in some other fashion. A second participant concurred, stating 
that for some people, success is not measured by employment and 
therefore programs cannot use key indicators for the entire population 
and apply them to persons with disabilities. Another participant 
cautioned that we need to determine what outcomes and indicators we 
want to focus on. If our outcomes are not defined properly, we will see 
a forced focus on the easier-to-serve populations and neglect the 
harder-to-serve populations. The participant suggested that a focus on 
quality-of-life indicators, such as the level of independence enjoyed 
in daily life, self-determination, and economic security, will allow 
measurable success for all beneficiaries. While employment is a 
reasonable outcome measure, not all persons with disabilities are able 
to return to work, and we should not devalue those individuals in the 
face of these other goals. Further, another participant noted that if 
there are going to be goals, stark decisions must be articulated. It is 
easy to divide people along lines of independent living, but it is 
harder to define goals for those who cannot live independently. This 
participant questioned the meaning of success: Is it integration or 
prevention from relying on the government and programs? Finally, one 
participant stated that persons with disabilities want self-empowerment 
and full integration, and therefore a focus on the broader disability 
community is needed, not just program-specific and employment outcomes 
as the only proxies. We also must make sure to not talk about only 
those portions of the disability community that researchers focus on, 
the participant said. 

One participant explained that it is not surprising that there are no 
key measures for success for Americans with disabilities because other 
countries do not have them either. A second participant noted that the 
problem with measures is that they focus on programs and not people. 
Another participant said that there must be a relationship between the 
purpose of the disability program and the indicators used to measure 
success. When discussing key indicators, a fourth participant pointed 
out that it is important to understand the distinction between the 
extent to which these systems make a difference in the quality of life 
for persons with disabilities and what is good public policy. 

In discussing key national indicators as a measure for success, one 
participant suggested taking a life path approach for different age 
groups. In other words, determine what defines success for individuals 
from the general community at different stages of their lives and 
contrast it with what constitutes success for those individuals with 
disabilities to see if there is a difference. A second participant 
stated that the National Indicators Project has quality-of-life 
indicators and that the United States' effort came about as a result of 
a GAO forum on key national indicators.[Footnote 2] The need for 
disability indicators is an important subset of the overall need for 
key national indicators. Another participant maintained that national 
indicators should also include income and assets, but the current 
disability support system does not allow for income or asset 
accumulation. Establishing economic security is key for persons with 
disabilities, the participant argued, including making benefits 
adequate and protecting these individuals from discrimination in the 
workplace. The goal should be for programs to make people better off 
and not just provide subsistence, the participant continued. A fourth 
participant agreed that economic security, including asset 
accumulation, is key and faulted the disability support system for not 
providing lifelong financial planning. 

In evaluating current disability programs, one participant acknowledged 
that disability programs score lower on the Office of Management and 
Budget's Program Assessment Rating Tool than other programs. The 
participant said, however, that these evaluations create a framework to 
measure improvement going forward and suggested that overall, there 
needs to be the political will to manage this problem. Another 
participant cautioned that there can be a problem if agencies are held 
responsible for outcomes they were not created to achieve. A final 
participant stated there was enough cumulative knowledge among the 
forum participants to create a national plan to measure success. 
However, what was lacking was an action plan and someone responsible 
for implementation of that plan. 

Suggested Next Steps for Achieving a 21st Century Disability Policy: 

Individual participants suggested a number of steps that could be taken 
by stakeholders to inform the debate to help move current policy toward 
achieving a 21st century disability policy. These include the 
following: 

* talk with people receiving disability services to find out what is 
working well, what is not, and what additional services they need to 
succeed; 

* develop a definition of disability and a standard language that could 
be used across related programs; 

* develop a comprehensive picture of individual needs for persons with 
disabilities--a picture that covers an individual's life span and is 
different for each age group; 

* identify barriers to coordination of programs; 

* identify best practices that could be shared across programs; 

* evaluate work incentives and disincentives and the coordination 
efforts between public and private sector disability entities; 

* evaluate both the short-term and long-term services for all veterans 
with disabilities while recognizing both the projected increase in the 
number of veterans filing for disabilities and the changing nature of 
the injuries being reported; 

* establish various program outcome indicators including quality-of- 
life indicators, to measure success and establish data-reporting 
requirements to track those outcomes; and: 

* focus on providing services to youth with disabilities in order to 
help them transition into the workforce. 

Concluding Observations: 

Changes in society, technology, and the economy have increased 
opportunities for individuals with disabilities to more fully 
participate in the workforce. At the same time, the growth in the size 
and costs of major federal programs not only contributes to the federal 
government's long-term structural deficit but also creates a strong 
business case for reexamining our current federal disability programs 
and identifying workable solutions to leverage change. To the extent 
that federal disability programs are aligned with 21st century 
realities, benefits can be achieved for individuals with disabilities, 
business, and government. Notably, recent attention to injured service 
members returning from the global war on terror offer opportunities to 
better serve veterans. This forum brought forth many of the challenging 
issues facing the federal government as it modernizes federal 
disability policy to better meet the abilities and needs of individuals 
with severe disabilities. Amongst these issues, the articulation of 
clear and coordinated policies, the development of strong and 
meaningful partnerships between all stakeholders, the use of targeted 
incentives to achieve desired results, and a reliance upon 
appropriately defined outcomes were noted. Clearly, as the country 
moves forward, the fiscal implications of any new actions--as well as 
the cost of keeping the status quo--must be considered. Solutions are 
likely to require fundamental changes, including regulatory and 
legislative action. Without strong federal leadership at this critical 
time to lead this transformation, there could be fewer options in the 
future available to policymakers seeking to improve federal disability 
programs. As with the GAO forum, policymakers can benefit from bringing 
together multiple stakeholders to seek common solutions. 

[End of section] 

Appendix I: List of Participants: 

Moderator: 

David M. Walker: 
Comptroller General of the United States U.S. Government Accountability 
Office: 

Participants: 

Gale P. Arden: 
Director, Disabled and Elderly Health Programs Group Centers for 
Medicare and Medicaid Services: 

Daniel Bertoni: 
Director, Education, Workforce, and Income Security Issues U.S. 
Government Accountability Office: 

Robert C. Brostrom: 
Special Assistant, Office of Disability Employment Policy U.S. 
Department of Labor: 

Judith A. Cook: 
Professor and Director, Center on Mental Health Services Research and 
Policy, Department of Psychiatry University of Illinois at Chicago: 

Col. Marsha Lee Culver: 
Director Secretary of the Navy Council of Review Boards: 

Susan M. Daniels: 
Daniels & Associates: 

Cynthia M. Fagnoni: 
Managing Director, Education, Workforce, and Income Security Issues 
U.S. Government Accountability Office: 

Marty Ford: 
Chair Consortium for Citizens with Disabilities: 

Lex Frieden: 
Senior Vice President The Institute for Rehabilitation and Research 
(TIRR) and Director of TIRR's Independent Living Research Utilization 
Program: 

Martin Gerry: 
Former Deputy Commissioner, Disability and Income Security Programs 
U.S. Social Security Administration: 

Margaret Giannini: 
Director, Office on Disability U.S. Department of Health and Human 
Services: 

Martin Gould: 
Director of Research and Technology and Co-Acting Executive Director 
National Council on Disability: 

John H. Hager: 
Assistant Secretary, Office of Special Education and Rehabilitative 
Services U.S. Department of Education: 

Dorcas R. Hardy: 
Member Social Security Advisory Board: 

Andrew J. Imparato: 
President and CEO American Association of People with Disabilities: 

Patricia A. Jonas: 
Assistant Deputy Commissioner for Disability Operations Office of 
Disability and Income Security Programs U.S. Social Security 
Administration: 

John M. Kamensky: 
Senior Fellow IBM Center for the Business of Government: 

Thomas J. Pamperin: 
Deputy Director, Compensation and Pension Service Department of 
Veterans Affairs: 

Virginia Reno: 
Vice President, Income Security National Academy of Social Insurance: 

Samuel B. Retherford: 
Deputy Director for Policy, Officer and Enlisted Personnel Management, 
Office of the Under Secretary of Defense for Personnel and Readiness: 

Robert J. Shea: 
Associate Director for Management U.S. Office of Management and Budget: 

Robert Silverstein: 
Director Center for the Study and Advancement of Disability Policy: 

David C. Stapleton: 
Director Cornell University Institute for Policy Research: 

Ray Wilburn: 
Executive Director Veterans' Disability Benefits Commission: 

[End of section] 

Appendix II: Agenda: 

8:30 a.m. 

Continental Breakfast: 

9:00 a.m. 

Opening Session 1.Welcome and Introductions 2.Overview of Agenda 3.Why 
the Need to Modernize: 

9:30 a.m. 

Session I:Modernizing Federal Disability Programs--What's Working Well, 
and What Should be Improved? 

10:00 a.m. 

Break: 

10: 15 a.m. 

Session II:Strengthening Partnerships and Coordination for Modernizing 
Disability Programs: 

11:45 p.m. 

Lunch with Film and Discussion: 2005 ESPY Arthur Ashe Courage Award to 
Emannual Ofosu Yeboah and Jim MacLaren: 

1:00 p.m. 

Session III:Modernizing Measures of Success of Disability Programs: 

2:00 p.m. 

Hill Perspective: 

2:30 p.m. 

Session IV:Prioritizing Next Steps to Achieving a 21st Century 
Disability Policy: 

3:15 p.m. 

Summary and Closing Remarks: 

3:30 p.m. 

Adjournment: 

[End of section] 

Appendix III: Contacts and Staff Acknowledgments: 

GAO Contact: 

Daniel Bertoni (202) 512-7215 or [email protected]: 

Staff Acknowledgments: 

In addition to the contact above, Brett Fallavollita, Assistant 
Director, and Kevin Kumanga, Analyst-in-Charge, managed all aspects of 
the work, and Krista Anderson, Anna Kelly, Scott Purdy, and Charles 
Willson made important contributions to organizing the forum and 
producing this report. 

[End of section] 

Related GAO Products: 

GAO Findings and Recommendations Regarding DOD and VA Disability 
Systems. GAO-07-906R. Washington, D.C.: May 25, 2007. 

Vocational Rehabilitation: Improved Information and Practices May 
Enhance State Agency Earnings Outcomes for SSA Beneficiaries. GAO-07- 
521. Washington, D.C.: May 23, 2007. 

Disability Programs: SSA Has Taken Steps to Address Conflicting Court 
Decisions, but Needs to Manage Data Better on the Increasing Number of 
Court Remands. GAO-07-331. Washington, D.C.: April 5, 2007. 

Vocational Rehabilitation: Earnings Increased for Many SSA 
Beneficiaries after Completing VR Services, but Few Earned Enough to 
Leave SSA's Disability Rolls. GAO-07-332. Washington, D.C.: March 30, 
2007. 

Veterans' Disability Benefits: Long-Standing Claims Processing 
Challenges Persist. GAO-07-512T. Washington, D.C.: March 7, 2007. 

DOD and VA Health Care: Challenges Encountered by Injured 
Servicemembers during Their Recovery Process. GAO-07-589T. Washington. 
D.C.: March 5, 2007. 

Federal Disability Assistance: Stronger Federal Oversight Could Help 
Assure Multiple Programs' Accountability. GAO-07-236. Washington, D.C.: 
January 26, 2007. 

Veterans' Disability Benefits: Claims Processing Challenges and 
Opportunities for Improvements. GAO-06-283T. Washington, D.C.: December 
7, 2006. 

Summary of a GAO Conference: Helping California Youths with 
Disabilities Transition to Work or Postsecondary Education. GAO-06- 
759SP. Washington, D.C.: June 20, 2006. 

Social Security Administration: Agency Is Positioning Itself to 
Implement Its New Disability Determination Process, but Key Facets Are 
Still in Development. GAO-06-779T. Washington, D.C.: June 15, 2006. 

Veterans' Disability Benefits: VA Should Improve Its Management of 
Individual Unemployability Benefits by Strengthening Criteria, 
Guidance, and Procedures. GAO-06-309. Washington, D.C.: May 30, 2006. 

Military Disability System: Improved Oversight Needed to Ensure 
Consistent and Timely Outcomes for Reserve and Active Duty Service 
Members. GAO-06-362. Washington, D.C.: March 31, 2006. 

Vocational Rehabilitation: Better Measures and Monitoring Could Improve 
the Performance of the VR Program. GAO-05-865. Washington, D.C.: 
September 23, 2005. 

Military and Veterans' Benefits: Improvements Needed in Transition 
Assistance Services for Reserves and National Guard. GAO-05-844T. 
Washington, D.C.: June 29, 2005. 

Computer-Based Patient Records: VA and DOD Made Progress, but Much Work 
Remains to Fully Share Medical Information. GAO-05-1051T. Washington, 
D.C.: June 28, 2005. 

Federal Disability Assistance: Wide Array of Programs Needs to Be 
Examined in Light of 21st Century Challenges. GAO-05-626. Washington, 
D.C.: June 2, 2005. 

Vocational Rehabilitation: VA Has Opportunities to Improve Services, 
but Faces Significant Challenges. GAO-05-572T. Washington, D.C.: April 
20, 2005. 

VA Disability Benefits and Health Care: Providing Certain Services to 
the Seriously Injured Poses Challenges. GAO-05-444T. Washington, D.C.: 
March 17, 2005. 

Social Security Administration: Better Planning Could Make the Ticket 
Program More Effective. GAO-05-248. Washington, D.C.: March 2, 2005. 

Vocational Rehabilitation: More VA and DOD Collaboration Needed to 
Expedite Services for Seriously Injured Servicemembers. GAO-05-167. 
Washington, D.C.: January 14, 2005. 

Workforce Investment Act: Labor Has Taken Several Actions to Facilitate 
Access to One-Stops for Persons with Disabilities, but These Efforts 
May Not Be Sufficient. GAO-05-54. Washington, D.C.: December 12, 2004. 

Disability Insurance: SSA Should Strengthen Its Efforts to Detect and 
Prevent Overpayments. GAO-04-929. Washington, D.C.: September 10, 2004. 

Special Education: Additional Assistance and Better Coordination Needed 
among Education Offices to Help States Meet the NCLBA Teacher 
Requirements. GAO-04-659. Washington, D.C.: July 15, 2004. 

Social Security Disability: Commissioner Proposes Strategy to Improve 
the Claims Process, but Faces Implementation Challenges. GAO-04-552T. 
Washington, D.C.: March 29, 2004. 

Transportation-Disadvantaged Populations: Federal Agencies Are Taking 
Steps to Assist States and Local Agencies in Coordinating 
Transportation Services. GAO-04-420R. Washington, D.C.: February 24, 
2004. 

VA Benefits: Fundamental Changes to VA's Disability Criteria Need 
Careful Consideration. GAO-03-1172T. Washington, D.C.: September 23, 
2003. 

Special Education: Federal Actions Can Assist States in Improving 
Postsecondary Outcomes for Youth. GAO-03-773. Washington, D.C.: July 
31, 2003. 

Medicaid and Ticket to Work: States' Early Efforts to Cover Working 
Individuals with Disabilities. GAO-03-587. Washington, D.C.: June 13, 
2003. 

Business Tax Incentives: Incentives to Employ Workers with Disabilities 
Receive Limited Use and Have an Uncertain Impact. GAO-03-39. 
Washington, D.C.: December 11, 2002. 

Long-Term Care: Elderly Individuals Could Find Significant Variation in 
the Availability of Medicaid Home and Community Services. GAO-02-1131T. 
Washington, D.C.: September 26, 2002. 

SSA and VA Disability Programs: Re-Examination of Disability Criteria 
Needed to Help Ensure Program Integrity. GAO-02-597. Washington, D.C.: 
August 9, 2002. 

SSA Disability Programs: Fully Updating Disability Criteria Has 
Implications for Program Design. GAO-02-919T. Washington, D.C.: July 
11, 2002. 

Special Minimum Wage Program: Centers Offer Employment and Support 
Services to Workers with Disabilities, but Labor Should Improve 
Oversight. GAO-01-886. Washington, D.C.: September 4, 2001. 

SSA Disability: Other Programs May Provide Lessons for Improving Return-
to-Work Efforts. GAO-01-153. Washington, D.C.: January 12, 2001. 

Social Security Disability Insurance: Raising the Substantial Gainful 
Activity Level for the Blind. T-HEHS-00-82. Washington, D.C.: March 23, 
2000. 

Private Disability Insurance: Employer-Sponsored Plans. HEHS-00-18R. 
Washington, D.C.: November 5, 1999. 

Social Security Disability: Multiple Factors Affect Return to Work. T- 
HEHS-99-82. Washington, D.C.: March 11, 1999. 

Federal Employees' Compensation Act: Percentages of Take-Home Pay 
Replaced by Compensation Benefits. GGD-98-174. Washington, D.C.: August 
17, 1998. 

VA Disability Compensation: Disability Ratings May Not Reflect 
Veterans' Economic Losses. HEHS-97-9. Washington, D.C.: January 7, 
1997. 

People with Disabilities: Federal Programs Could Work Together More 
Efficiently to Promote Employment. HEHS-96-126. Washington, D.C.: 
September 3, 1996. 

SSA Disability: Program Redesign Necessary to Encourage Return to Work. 
HEHS-96-62. Washington, D.C.: April 24, 1996. 

FOOTNOTES 

[1] High Risk Series: An Update. GAO-03-119. Washington, D.C.: January 
2003. 

[2] GAO, Forum on Key National Indicators: Assessing the Nation's 
Position and Progress. GAO-03-672SP (Washington, D.C.: May 1, 2003). 

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