THE NATIONAL INSTITUTE OF DISABILITY AND REHABILITATION RESEARCH

IN PARTNERSHIP WITH

THE NATIONAL ACADEMY OF SOCIAL INSURANCE

PRESENT A WORKSHOP ON

PATHWAYS TO ECONOMIC SECURITY FOR PEOPLE WITH DISABILITIES: SOCIAL INSURANCE, ASSET DEVELOPMENT

AND SUPPORTED EMPLOYMENT-- TRANSLATING RESEARCH INTO

POLICY AND PRACTICE

Wednesday October 15th 2008 The workshop convened at 9:00 a.m. in the Equality Center at the offices of the Human Rights Campaign, 1640 Rhode Island Avenue, NW, Washington, DC.

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AGENDA 9:00-9:10 Welcome and Introductions:

• Virginia Reno, Moderator, Vice President for Income Security, National Academy of Social Insurance (NASI)

• Margaret Simms, President, National Academy of Social Insurance

(NASI) • Timpthy Muzzio, Director of the Division of Research Scientists at the

National Institute on Disability and Rehabilitation Research (NIDRR) 9:10- 10:30 PANEL 1: Presentation of Research Findings

• Margaret Campbell, Moderator: Senior Scientist for Planning and Policy Support at National Institute on Disability and Rehabilitation Research (NIDRR)

• Johnette Hartnet, Director of Research and Strategic Partnership

Development for the National Disability Institute (NDI)

• John Kregel, Rehabilitation and Research and Training Center on Workplace Supports and Job Retention, Virginia Commonwealth University

• Jon Sanford, Rehabilitation Engineering Research Center on

Workplace Accommodations, Georgia Institute of Technology

• Richard Balkus, Acting Associate Commissioner for the Office of Program Development and Research of the Social Security Administration.

10:30-11:15 PANEL 2: Response from Experts in Policy and Implementation

What needs to happen to implement these research findings in policy? What are the opportunities and barriers? What are the implications of

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the evidence-based research for social insurance, income security, and tax policy?

• Laurel Beedon, Moderator, Senior Fellow at the National Academy of Social Insurance.

• David Wittenburg, Senior Researcher in the Center for Studying

Disability Policy at Mathematica Policy Research.

• Christopher Button, Supervisory Policy Advisor for the Workforce Systems Policy Team in the Office of Disability Employment Policy at the U.S. Department of Labor.

• Sue Suter, Associate Commissioner at the Office of Employment

Support Programs, Social Security Administration.

-- Break: 11:15 – 11:30 AM -- 11:30-12:20 PANEL 3: Open Discussion and Knowledge Translation

If we were to adopt the evidence-informed policies presented in Parts 1 and 2, what strategies are needed to put the policy into practice? What are the opportunities and barriers?

• Marty Ford, Moderator, Director of Legal Advocacy for The Arc and UCP

Disability Policy Collaboration. • Susan Daniels, Consultant at Daniels & Associates.

• Michael Morris, Director of the National Disability Institute of the National

Cooperative Bank Development Corporation in Washington, D.C 12:20-12:30 Wrap Up and Adjourn

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Welcome and Introductions

Virginia Reno, Moderator: Good morning, everyone. And thank you for being here. I'm

Virginia Reno, the Vice President for Income Security at the National Academy of Social

Insurance, and I just want to give you a few logistics before we turn it over to our president

for the real welcome.

First of all, this is the Equality Center. We're thrilled with this space. It's the first

time we've used it.

We will have a break this morning that will be just 15 minutes, from 11:15 to

11:30, and we do plan to end promptly at 12:30. We have a very full program.

In your folders we have an agenda and bios for all of our speakers, so we will not

be spending a lot of time this morning with long introductions.

Very important for us at the National Academy of Social Insurance is this green

evaluation form. Please fill it out and turn it in to us, including questions on the back about

future topics that would be of interest to you in this area.

So without further ado, I would like to introduce Margaret Simms, the President of

the National Academy of Social Insurance.

Ms. Simms: Thank you, Gina. Good morning. I'm pleased to welcome you to

today's workshop on Pathways to Economic Security for People with Disabilities: Social

Insurance, Asset Development and Supported Employment -- Translating Research into

Policy and Action.

We are pleased to present this event in partnership with the National Institute for

Disability and Rehabilitation Research (NIDRR). The goal of this workshop is to draw new

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insights into how scholarly research findings can be translated into public policy. We are

pleased to feature new results from NIDRR-sponsored research and from demonstration

projects sponsored by the Social Security Administration. It's a pleasure to have both

Federal agencies represented here today.

The National Academy of Social Insurance is a nonprofit, nonpartisan membership

organization of the nation's leading experts on social insurance. Our mission is to promote

understanding of how social insurance contributes to economic security in a vibrant

economy.

We have a long interest in disability policy. Our disability policy panel report,

issued more than a decade ago, became the blueprint for new policies adopted in the Ticket

to Work and Work Incentive Improvement Act of 1999.

That report remains timely, and its title still resonates -- Balancing Security and

Opportunity, the Challenge of Disability Income Policies.

I want to thank NIDRR for its support of this event, and I'm pleased to welcome

Timothy Muzzio, who is Director of the Division of Research Scientists at NIDRR, to say a

few words.

Mr. Muzzio: Good morning. And welcome to everyone. NIDRR is very excited

to be cosponsoring what promises to be a very engaging workshop. To put this in

perspective, the National Institute of Disability and Rehabilitation Research, NIDRR, is part

of the Office of Special Education and Rehabilitative Services in the U.S. Department of

Education.

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We are delighted to be cosponsoring this event in partnership with the National

Academy of Social Insurance, and I want to personally thank the NASI staff. Margaret

[Campbell of NIDRR] has been telling me about the hard work that has gone into

developing this workshop, especially Pamela Larson, Virginia Reno, and Laurel Beedon, for

providing the impetus for the workshop and all their hard work in making this happen.

I also want to thank our Margaret Campbell for her hard work in leading NIDRR's

side of putting this workshop together.

NIDRR's mission is to generate new knowledge and promote its effective use to

improve the abilities of individuals with disabilities to perform activities of their choice in

the community, and to expand society's capacity to provide for full opportunities and

accommodations for its citizens with disabilities.

In short, we try to generate quality new knowledge to improve the lives of people

with disabilities. Our research focuses on three domains: health and function, community

integration, and employment. In the last couple of years we have made a particular

emphasis on our research in employment.

So, today's workshop topic, Pathways to Economic Security for People with

Disabilities coincides very closely to the emphasis of our research efforts.

It gives us a wonderful opportunity to highlight some of the research and

development activities that we have been investing in to further the goal of employment--

especially in areas supported in asset accumulation and workplace accommodations.

This workshop also provides NIDRR with the unique opportunity to gain insight

from other Federal agencies about the work they have been doing, and how the research that

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they are doing can be leveraged into larger studies to shape policy and practice in

employment for people with disabilities.

In short, we look forward to this as a very engaging, informative, and lively

exchange on a topic that is absolutely critical to reducing the employment and economic

barriers of people with disabilities of all ages. We are pleased to cosponsor the event, and

once again, we welcome all of you and thank you. PANEL 1: Presentation of Research Findings Introduction:

Margaret Campbell, Moderator: Good morning again. My name is Margaret

Campbell, and I am the senior research scientist with NIDRR for planning and policy

support, and it is my pleasure today to be the moderator for our first panel, which is going to

focus on research findings. We are very fortunate today to have four distinguished

researchers who will share with us their emerging findings and their insights from

investigations of four different pathways to improving the economic security of people with

disabilities.

We will start first with Professor John Kregel, Chair of the Department of Special

Education and Disability Policy at Virginia Commonwealth University (VCU). He will

focus on supported employment research.

Next we will turn to Dr. Johnette Hartnett, Director of Research with the National

Disability Institute, and also a co-PI with the NIDRR-funded Asset Accumulation Project,

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which is in its last few months at the University of Iowa, and will be moving to Syracuse

University.

The third presenter will be Jon Sanford, the co-director for the NIDRR-funded

Rehabilitation Engineering Research Center on Workplace Accommodations. He will focus

on his research on workplace accommodations.

And last, we go to the bigger picture, and we turn to Dr. Richard Balkus, who is

the Acting Associate Commissioner for the Office of Program Development and Research,

with the Social Security Administration. He will share with us emerging findings and

insights from several SSA demonstration studies.

I'm going to lay out a few ground rules. All the presenters have agreed to talk no

more than 15 minutes, and that will give us 20 minutes to give the researchers an

opportunity to ask each other questions. I think this rarely happens, but I know we have all

probably been in that place where you hear your fellow presenter saying something and

you're just dying to ask a question.

So, we're going to give them an opportunity to ask each other questions about how

they can leverage their findings, what's ready to be translated, what steps they're taking to

translate their research and, what's ready to be translated. If they lack for words, I have a

few questions.

Then there will be opportunities in the other two segments of today’s meeting for

you all to ask questions.

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Presentation of Research Finding--John Kregel

Mr. Kregel: Thank you for this opportunity. I am delighted to be here

representing the Virginia Commonwealth University Rehabilitation Research and Training

Center (RRTC) on Workplace Supports. The work that I'm talking about represents the

work of over 40 people over the past 25 years. We are finishing our 25th year as a

rehabilitation research and training center. I am finishing my 25th year at Virginia

Commonwealth University, and the university just gave me this nice nylon commuter bag --

(Laughter.)

in recognition of my 25 years of service. So it's great to be here.

It's also great to be with this panel, one of the rare events I've had in the last few

years. We planned, we had a call, we talked about how our presentations would work

together, and I am really delighted to be a part of this.

Finally, I'd like to say I'm a proud NASI member, and it's really great to have this

invitation to come and participate in this event.

The RRTC on Workplace Support and Employment Retention is in its fifth year.

We are compiling results from a variety of studies. Some of the studies have papers that are

available on our Web site, www.worksupport.com.

The presentation I am doing today is derived from a paper, "Organizational

Factors That Facilitate Successful Job Retention of Employees with Health Impairments

and Disabilities." It is also on our Web site.

Our conceptualization of where we've been for the past five years focuses on the

notion of employment retention. It's based on a very simple paradigm. There are two sides

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to the problem of employment and self-sufficiency for individuals with disabilities. Not

enough people get jobs, and too many people lose jobs.

A lot of our resources are dedicated to helping people get jobs. Not enough

resources are directed towards helping people maintain employment for a protracted period

of time.

We are engaged in three specific studies: The first one is the VCU Manpower Six-

Site Clinical Trial. This was a supported employment study involving public-private

partnerships between community rehabilitation providers, and vocational rehabilitation and

the manpower affiliates in six major cities nationwide.

We did a randomized trial. There's a paper about that trial that shows limited

results, but an overall effect that's positive in terms of employment. The results vary by site,

and in the level of fidelity to the project implementation protocols.

Keep in mind; we are a rehabilitation research and training center with a $400,000

research budget. We run a lot of different studies, and the difficulties involved in

maintaining fidelity across multiple clinical sites and communities is very, very challenging.

But, we have learned how to do that and are continuing this line of research in a variety of

other activities that we have under way.

We do need additional validation studies for this type of public-private partnership

model, and the other public-private partnership models that are coming out. For example,

the work that Walgreen's is doing.

There are some parts of various studies that we can look at that are ready to be

tested for the possibility of replication across multiple sites. We did organizational case

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studies with five employers, and I'm going to spend a little bit of time talking about that at

the very end.

These were 120 structured interviews over a three-year time period focused on

progressive employers with effective disability management and return-to-work programs.

Our conception of demand-side research -- and it's really been led by Jon Sanford

and the other folks at Hunter College and the RRTC on employment service systems--is

looking at what progressive employers are doing, to address the problem of employment

retention and identifying the extent to which the public sector can derive something from

these strategies, and convert them to practices that the public sector can use, either to help

employees or to modify the programs that we operate.

So, we find out what the progressive employers are doing to solve their health and

disability management problems, and their job retention problems. Then we ask how can we

learn lessons that can be applied to the employment and employment retention of

individuals with disabilities?

A third study was the collaborative survey with the Disability Management

Employer Consortium that focused on current general retention practices, disability

management practices, the effect on employment retention, and their current experiences

employing individuals with disabilities.

Remember, when we talk about “disability management,” and “integrated

disability management wellness programs,” those all have to be justified within the

corporations--within the businesses to determine, “Is it cost effective that we spend

$700,000 on this wellness program every year?” How do they go about doing that; what are

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the benchmarks that they set; and how can we translate some of those benchmarks into

things that might be beneficial to our public programs?

The purpose of this presentation is to say where we are in terms of identifying

evidence-based practices that can be rigorously tested in the future through other Federal

agencies that will promote employment retention or improve employment retention of

individuals with disabilities. There are very few evidence-based practices at present, and

we'll talk about that in just a minute.

We also want to ask, where are the promising practices that should be tested

through rigorous methodologies? Where are there projects, practices, strategies, and

programs that we might raise to the level of actually running a clinical trial or test with

experimental rigor?

Then, where are there innovations that should be examined as potentially

promising practices?

And finally, we want to identify areas where we don't have any promising practices

that we can say we should set this up as a large-scale demonstration.

I'm going to use two terms for the next few minutes, and the first one is “front-door

factors.” This means the hiring behavior of employer organizations as it relates to people

with disabilities, job seekers, and new employees.

We spent a lot of time, a lot of effort, and a lot of resources on how to approach

employers, how to talk to employers about making accommodations or customizations that

allow people to obtain employment. These are front-door factors; and there are whole sets of

structures within business organizations that are involved in this process, from HR to

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employee benefits, to a variety of other offices that work on what we would call the front

door.

There's also the “back door.” That focuses on retention behavior of employers as it

relates to protecting the health and productivity of all employees, but especially to the

support and accommodations of people who develop work limitations for any cause.

We have people who may have diabetes or people who may develop cancer, or

people who may have cardiac problems. There's a whole structure in place to assist these

individuals in returning to work. This structure comprises the ergonomics folks, the return-

to-work people, the disability management people, the employee assistance programs, and

whatever else it might be.

The first thing to understand from the public sector, is that current policy efforts to

influence the demand-side aspect of employment for people with disabilities have been

focused on the front end to the exclusion of the back end, and learning from what people do

to retain their employees because they don't want to train new people. The public sector has

to maintain its aging workforce. The public sector doesn’t want people slipping out.

They're also hiring and finding people to fill jobs. However, hiring qualified people who

can run the machines is a huge problem that business and industry face right now.

We need to be involved in both strategies. In addition to everything we're doing at

the front-end to get people initially employed, we need to be involved at the back end.

From the paradigm, we can identify two problems. Not enough people get jobs,

and too many people lose their jobs, and when they lose their jobs, they enter the benefits

programs, and have difficulties securing employment on a long-term basis.

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The other thing that we learned -- and this is just throughout our research in terms

of working with manpower, working in qualitative work, and working with the Disability

Management Employer Consortium-- is that in business there are two towers: There's the

front-end tower and the back-end tower. There are the individuals who might help you with

your accommodations as you come in, the HR side, and people who assist you once you are

employed -- you are injured or acquire a disability, acquire a health condition. The two sides

don't talk to each other. And it's very, very rare to have an integrated system. It's also very,

very hard to define that.

So as we think about our audience for demand-side research -- and we're talking

about retention as opposed to initial hiring -- we need to talk about different structures,

different organizations, different vice presidents, and different officers within the overall

business organization that we're involved in.

The high cost of health care, global competition, and the need for highly skilled

and productive workers have forced progressive employers to increase the work that they're

doing to maintain people in employment. And they're doing very, interesting, very

progressive things. I'm going to give you one example down the road that I think is valuable

for us as we move towards lessons that we might learn.

Another key point that I think really affects the design of intervention programs, or

the design of policies, or the design of future research is that the provision of

accommodations and return-to-work services are not one-time events.

Someone doesn't have an accident, or develop cancer, or have a stroke, and then go

through rehabilitation, return to work and then go on as if nothing were different.

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We did individual case studies. In each of the five employers we studied we

identified five folks, and we interviewed them every year for three years. In all 25 cases,

their situation changed every year.

We can't think of return-to-work as a one-time event. We need to think of return-

to-work as an ongoing event. An event that affects how public policy and public agencies

may interface with employers in terms of developing collaborative programs that keep us

engaged and keep individuals engaged for protracted periods of time.

Effective supports and accommodations are rarely provided through external

sources, but rather through highly knowledgeable support staff immediately available in the

work environment. That's the secret of Project Search, one of the programs that I'm going

to recommend as a program that could go through rigorous trials. We're doing that in

another one of our NIDRR-funded DRRP projects at present.

What we are finding is people working on-site all day, every day, providing

support to individuals who need to retain their jobs is really the key element in what needs to

be done.

There are a couple of different models to talk about, ones that are rehab-driven, and

one sort of employer-driven, that I would like to discuss in just a second.

In terms of where we are, there are few evidence-based practices beyond support in

employment and the work that's been done with that population of individuals with

psychiatric disabilities.

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There are lots of other studies that can and should be done in this area and the area

of customized employment, and employer partnerships. There should be studies that can

test a supported employment model with various populations, and those should be done in

rigorous trials. Some of that is being done through work by other agencies.

There are promising practices all focusing on the availability of ongoing site-based

supports, and there is an urgent need for demonstrations focusing on specific populations.

For example, when we're talking about kids with Asperger's syndrome in postsecondary

education and what happens to them and how we work with them--there are no promising

practices that we can really identify. There are some populations that-- that we haven't

started on, I guess is what I would say.

So, on to new research activities. There should be an efficacy study of the Project

Search model, where individuals are immersed in 700 hours of work experience within a

business such as a hospital, or a financial institution, and then are potentially hired into the

business or receive services through vocational rehabilitation.

There are 60 Project Search sites. We run our sites around the clinical trials in the

area of Project Search for adolescents with autism that we're just starting through our autism

and vocational rehabilitation DRRP.

There are also manpower collaborative partnerships, other public-private

partnerships that in my mind are ready for large-scale testing. There are some fidelity

instruments that accurately and adequately measure the independent variable, the

intervention that we can move on from.

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There are demonstration projects that focus on public-private partnerships and

other collaborative relationships, but I want to talk here about one particular type of model

that we've seen in a couple of different places.

One model is Cascade Engineering in Michigan. Through their VR partnership,

they have what I would call a retention specialist. This person's job is to keep all people

retained in employment--this could be identifying an individual with a disability that they

can do things for in terms of ongoing support, or it could be identifying people who might

need accommodations, or might need specific rehabilitation services, or have other needs

whatever they might be. Additionally, Cascade Engineering is concerned with everybody

else who has retention problems.

There's another model that's being funded right now by the Vermont Medicaid

Infrastructure Grant that is -- they're funding it with seed money for a year, and then

employers are going to come in later and provide support. This is another employer-funded,

after seed money from the public agency, retention specialist.

Why do people lose their jobs? People lose their jobs because they can't get their

car fixed, they can't get a loan, and so they can't get to work, and so they lose their jobs. If

they're out of a job, then things may happen to them, and they may show up in one of the

public employment systems as a result.

Why do people lose their jobs? They need money for childcare or daycare or

health care. They go to a payday loan; they borrow $600 that's withdrawn out of their

salary. They've got $800 that they have spent. Their balance, their principal balance

remains $600.

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The retention specialist can go into these kinds of situations, work through a credit

union, and get help for the individual if he or she needs to find childcare or eldercare, or get

a part for the car or whatever else needs to be done to enable individuals to remain in

employment.

This approach is ultimately going to reduce the number of folks who contact our

systems through one program or another--through the workforce system, through the rehab

system, or through the Social Security program. And, it looks at new ways to make a

difference in what individuals are able to do.

As we look at redesigning how we go about focusing on retention, one of the

demonstration ideas that I feel very strongly about is on-site supports for individuals who

have a variety of issues that affect their ability to do their job, from a health condition to a

manifested disability, to family problems, to substance abuse problems. If they can be kept

in employment then they do not enter our benefit systems and the other programs that are

very, very expensive.

Another success of Project Search is the Walgreen's demonstrations. What we

have seen to this point is the importance of people on-site. The secret, as we have gone

through the project and done our collaborative work in the area of work experience for kids

exiting schools, is the individuals who are always there, all day, every day. They are in the

hospital, in the large financial corporation, in the Chesterfield County government complex

down in Richmond, so that you can't go to the elevator, you can't go to the parking lot, you

can't go to lunch, you can't go to a staff meeting, you can't walk the hallways without seeing

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the supervisor of someone who is employed there, one of the individuals with a disability

who is working there, or someone who may be a potential lead for another replacement.

On-site interventions for individuals with disabilities to maintain them in

employment I think is an understudied area in terms of demonstrations.

Finally, we need to look at transitions from postsecondary education to

employment, transition from secondary education to employment, and veterans exiting the

Armed Forces and attempting to access public employment and benefits.

And I would also say attempting to access postsecondary education as well. We

are seeing folks in our community college systems and at VCU who are being discharged

with TBI or PTSD, and it has really been a challenge for them and for our disability student

support services.

So, I’ve thrown out some ideas. I look forward to discussing these with the panel.

Thank you very much for your time this morning.

(Applause.)

Presentation of Research Findings--Johnette Hartnett

Ms. Hartnett: Good morning. It's really a pleasure to be here. It's somewhat of

an honor to represent this body of work that started five years ago. I first want to thank

NASI for the invitation, and I want to thank NIDRR for the vision of introducing the priority

five years ago that was the first ever research to begin to look at asset development, asset

accumulation and tax policy for people with disabilities.

It has been an incredible ride. I also want to thank Michael Morris, who is co-PI

on this NIDRR funded grant and his vision over five years ago when he started the National

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Disability Institute, and we began a brown-bag lunch here in Washington looking at the

issues of asset development. We knew that the welfare legislation of 1996 Congress

introduced the Asset for Independence Act that provided states with resources to increase

savings through an innovative match plan for its low income population. This program

allowed people to save up to $1000 a year for a home, continued education or self-

employment. Although there was a national demonstration little was known about how and

if people with disability participated in the Individual Development Accounts (IDAs).

From the welfare research we knew that 40 percent of the remaining caseloads on

welfare were people with disabilities. We knew that much of the poverty policy work that

began or expanded in the 1990s such as the IDAs, financial education and free tax

preparation did not include outreach to customers with disabilities.

I think for many, and for those of you that are not familiar with the asset

development field this is a new agenda and new thinking, and it's not just about disability.

What's happening with this work is we're beginning to understand that this is about poverty;

this is about our poverty population that we have really not looked at closely. Through our

work over the past four years with the IRS and our outreach to free tax coalitions we have

learned that over 25 percent of people accessing free tax assistance in many sites across the

country report a disability or a member in their family with a disability. Historically,

disability has not been part of the mainstream economy or participated in investments,

savings, and homeownership. For people on public benefits we know that their families are

worried if they file a tax return (event if no obligation exists) they might lose their benefits.

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In the past the business sector and financial institutions have not been given a

business case for why customers with disabilities make good sense. Many think disability is

a wheelchair, or is a physical disability. Most don’t know the history of disability – how we

had institutions well into the twenty century, no civil rights law, or that our children could

not attend school.

We passed legislation in the '70s that allowed our youth to go into the mainstream

classroom. There are still issues about what students are learning in the classroom, and what

happens to them when they transition into the adult world. Unemployment for people with

disabilities is almost double what it is for a person without a disability – and our highest

high school drop out rates are young boys with disabilities.

The new asset agenda that is being led for low-income Americans is helping us in

disability understand the potential of this work. Historically disability has focused on

income maintenance now it is employment maybe with some income assistance as well.

Part of this work is generating new conversation. Yes, people with disabilities can work;

people on SSI can work; people receiving a number of benefits can work.

Disability policy is looking at individual plans to self-directed accounts for

individuals who qualify for specific waivers. These are customized accounts that forward

autonomy and self-determination. Other accounts such as the 529s, which are savings

accounts for families with kids headed to college don’t provide for families with kids not

headed to college but instead use resources for a computer or that first apartment. Currently,

there are four bills in Congress on tax advantaged savings for families with members with

disabilities – the first time in history Congress is considering these issues.

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Parents that have children born today with lifelong disabilities want their kids to be

full citizens. They are not going to face the same issues that the generations before them

faced that fought for the civil and human rights of people with disabilities. They want their

kids to go to school, be educated, get good jobs and be active members of their

communities. And unlike the generations before them, they will expect an environment that

is fully accessible.

We're finding through some of the research that there are trans generational wealth

transfers that really do indicate as people grow up how they are going to be financially as

adults. New research just released demonstrates that a young boy today has a 40 percent

chance of having the same salary as his dad when he grows up and more likely to be in the

same class.

Oliver and Shapiro’s research on trans-generational wealth in the African-

American community demonstrated that individuals and families that received land from the

Homestead Act in the 1800s are today better off than those who did not. We know from the

history of disability that, from the early 1600s on, if you lived in communities and you were

a person with a disability and you received an inheritance, you were not allowed to keep it.

We have never really studied trans-generational wealth and disability but we know

from the research of Shapiro and Oliver the results are pretty devastating.

The slide in front of you “who are people with disabilities” is here because many

people do not understand that we are people with disabilities. Well, they're us. And if I

asked every one of you in this room, you probably know somebody or you have somebody

in your family. I was raised by two parents with disabilities. My dad had cerebral palsy, my

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mother had polio. My father was a professor for 50 years. So disability has been a part of

my life.

We know from the demographics that the population with disabilities is rising.

Many people don't understand, and when I go out into the funding world, the nondisability

funding world, people don't understand that 22 million of our American families have a

member with a disability; that of 22 million working-age people with disabilities, about 7.6

million are taxpayers and about 1.3 to 1.5 million are not filing taxes and could be missing

out on over a billion dollars of the Earned Income Tax Credit.

Through our national tax work we are implementing an innovative pilot for the

2009 filing season to help Deaf participate more fully in free tax preparation. The REI Tour

Deaftax will be piloted in five cities and use new video phone technology that will assist in

providing real time tax preparation remotely using tax preparers in two locations who are

Deaf to assist individuals calling through the video phone.

The technology we are using is the Snap!VRS phone that has a real-time

interpreter on the screen when you dial. This pilot will have a Deaf tax preparer working

with a Deaf client. The video technology provides tremendous opportunities for serving

rural America and populations that are homebound.

We know that there have been reports to Congress. Taxpayer Advocate did a report

two years ago on the needs of accessibility to Web sites for people with disabilities--people

who are blind. They cited the IRS.gov website as not fully accessible for people who are

blind and deaf. The importance of this report to Congress is that all of our Web sites whether

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at a federal agency or private company need to be totally accessible, and as we know, they

are not.

The asset work is happening because of the non-traditional disability partners who

have come to the table. For example the National Federation of Community Development

Credit Unions - there are 230 of these faith-based credit unions who work with the poor

have developed a curriculum and outreach strategies for reaching customers with

disabilities. The World Institute on Disability in Oakland, California has an online

newsletter – Equity – that is a clearing house for asset development articles and information;

Southern New Hampshire University, Center for Economic Development and Disability

have conducted the first research on the financial and tax needs of taxpayers with significant

disabilities; and the Burton Blatt Institute at Syracuse University who is a research partner

will host the next generation of asset research over the next three years; and, of course, the

National Disability Institute that is leading the work in asset development nationally for its

signature project the Real Economic Impact Tour (REI).

The focus of research we have conducted is the various opportunities for tax

reform, and profiles and characteristics of taxpayers with disabilities. This is the first time

ever that we actually looked at who our taxpayers with disabilities are and what they need.

IRS's Stakeholder Partnerships Education and Communication, Wage and Investment

Research Division, collaborated with us at the National Disability Institute to do the first

focus groups nationally that produced qualitative research on the profile and characteristics

of taxpayers with disabilities. As a follow-up to this research IRS SPEC W&I Research did

24

a national survey of taxpayers with disabilities to provide quantitative data on their

preferences, habits and use of tax services and products.

IRS SPEC and NDI began outreach to taxpayers with disabilities and their families

to better understand and utilize the various provisions available in 2004. The Real Economic

Impact Tour (REI Tour) began in 11 cities and in 2008 was in 62 cities and in four years

assisted over 151,000 taxpayers with disabilities with tax refunds of $135. We started with

11 cities. That is our real on-the-ground work.

The REI Tour is working with all of you in this room. I have the CMS, SSA, VR,

DOL OneStops, FDIC, IRS, VA, and many more public and private partners at the table.

We are working with a number of veterans’ organizations to help our cities providing free

tax preparation to understand the needs of taxpayers who are veterans with disabilities.

Steve Mendelsohn, who is our lead tax attorney, and is blind, lives in New York

City, and is a lead researcher on the NIDDR grant. Steve’s work found that the tax system

does not help low-income individuals with the initial formation of capital and although there

are a few opportunities to accumulate assets for the Earned Income Tax Credit for someone

on a public benefit the majority of tax incentives do not benefit low-income people with

disabilities.

We know from our research, NDI and IRS that 51 percent of our taxpayers with

disabilities make under $20,000, compared to 33.5 percent for nondisabled taxpayers. We

know that 21 percent of taxpayers with disabilities make over $40,000. So, we have about

80 percent of our population making under $35,000.

25

Steve Mendelsohn’s research also recognizes that there are certain gateway costs

that people with disabilities accrue just because of their disability and an environment that is

not accessible. The cost for someone with a disability to go work is higher than it is for

someone without a disability.

The perennial topic we research is the removal of barriers to self-sufficiency posed

by the means-tested provisions. There is little doubt that we need to develop a new model

for social insurance, employment, and asset development programs to work together.

We have learned that the Earned Income Tax Credit (EITC) is important for

persons with disabilities. Just to give IRS a little plug, because they've been such a

wonderful partner for disability. They are the ones who said initially when we asked what

they were planning to do with their publications on disability tax provisions and credit that

“we don’t do anything with these other than post them because nobody likes us.” We said

“We do” and the rest is history. We began in 11 cities four years ago, with no money, and

we started going to the free tax coalitions in each city and saying, "Oh, by the way, would

you expand your outreach to people with disabilities?" And of course the cities did. For

2009 we will be in 84 cities with mini-grants to 54 of those cities.

The EITC started in the Nixon Administration, and it was really designed to be a

supplement to low income, minimum wage workers. And as you can see, TANF is about a

$17 billion program, food stamps about $17 or $18 billion, and the EITC is about a $43

billion program. It helped over 22 million families this past year although it is estimated

that about 20 percent of the EITC goes unclaimed.

26

I think it's really interesting -- the IRS says it's the most effective anti-poverty tool

because it lifted over 5 million individuals out of poverty each year, including 2.6 million

children.

In 2006, the Ford Foundation supported research to study the needs of taxpayers

with disabilities in four cities. Educating Democracy is the name of the study. Please visit

www.reitour.org for this and other reports. We surveyed about 3,100 filers walking into free

tax preparation sites in New York City, Wichita, West Palm Beach, and Boston, and we also

surveyed individuals who were associated with disability organizations. What we found

pretty much matches the profile of the low-income population without disability, but only

30 percent of those surveyed reported having a checking account. And, the new research

that's just come out from Washington University is that 20 percent of Americans do not

have a transaction account -- 20 percent. The Ford Research found that 12 percent of people

with disabilities had savings accounts, 24 percent had both checking and savings. Twenty-

five percent reported receiving the EITC, and 57 percent said they needed special

accommodations at the tax sites. None had participated in an IDA and 12 percent received

SSI and nine percent were on SSDI. The average age of the taxpayer with a disability was

42, compared to 32 for a taxpayer accessing the same service without a disability. The No. 1

fear people with disabilities expressed about why they are afraid to file it the possibility that

they would lose their health care benefit.

So, there's lots of innovation going on in the area of asset development and

disability. The next wave is to translate the innovation into sustainable infrastructure within

communities that are serving low-income populations.

27

Our research demonstrates that people absolutely desire to get off public benefits.

Not one person interviewed in our focus group research with IRS reported they wanted to

stay on benefits.

In addition, our research found an alarming lack of basic financial and tax

knowledge and association with institutions or organizations that provide this information.

People could not tell us the benefits that they were on and or what the eligibility rules were.

They could not tell us any of the tax provisions that were available to them.

And, of course, we heard that many of the financial institutions are just not

accessible, especially for people with sensory disabilities or mobility issues. The lack of

materials and alternative formats--I'm not going to even go there because it's another big

issue that needs its own seminar and discussion.

I attend many national conference put on by financial institutions and think tanks

that talk about serving the underserved market. It turns out they're looking at people whose

average median incomes (AMIs), are $45,000 to $48,000. So, if you even go 10 percent or

15 percent below that AMI, you're talking about people with incomes $38,000, or $40,000.

To capture the EITC population, a family of four would have an income of only $40,000.

We know from our research that many of the 3 million taxpayers using the volunteer income

tax assistance have incomes well below $35,000 a year.

So much of the work that's going on, the innovative poverty work and even some

of the asset building work is looking at populations that have income over the EITC limit,

over $40,000. And this really excludes probably about 80 percent of our taxpayers with

disabilities, because their incomes, as we have seen, are well below $40,000.

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Fifty-nine percent of people with disabilities said they use a computer at home, and

that's compared to 76 percent of persons with no disability. Thirty-one percent prepare their

own tax returns, compared to 42 percent with no disability. I could go through this in more

depth but my time is up. I guess I'm just going to stop here.

(Applause.)

Presentation of Research Findings--Jon Sanford

Mr. Sanford: Good morning again. I'm Jon Sanford and I'm from the RERC on

Workplace Accommodations at Georgia Tech.

Just for those of you who aren't familiar with the differences between an RERC

and John was talking earlier about the RRTC, the RERC focuses on rehab engineering

intervention. So we focus on -- in general RERCs do -- on workplace accommodations

which would fall under one of the kinds of supports that John would have been referring to

earlier this morning, and as a rehab engineering center we focus on those interventions that

are related to technology and environment.

In particular, we focus on those related to universal design, and so I wanted to talk

specifically about the research that we are doing and have done that is related to universal

design as an accommodation.

Because I think this has very large implications for our practice and for policy.

Whereas most of what we do as an RERC is to develop new technologies, and new designs

that could be implemented as accommodations, some of the work that we are doing and the

research that we're doing related to universal design is much more focused or has greater

implications for policy.

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How many of you are familiar with universal design at all?

(Show of hands.)

Okay. A lot. Good. Just to bring everybody up to speed, universal design was

coined by an architect, Ron Mace, who had polio when he was a child, and went through

school and was instrumental in the accessibility movement. Along about the late '80s and

early 1990s, he came up with this idea of universal design, and that is the design of products

and environments to be usable by all people to the greatest extent possible, without the need

for adaptation or specialized design.

So, in essence, the idea of universal design was to try and design the world in such

a way that we had limited needs for system technologies and specialized products--that these

were things that everybody could use in the same way.

Six years after Ron came up with this term, a number of us who were working at

NC State at the time, came up principles of universal design, which are listed on my slide as:

equitable use, flexibility use, simple and intuitive use, perceptible information, tolerance for

error, low physical effort, and size and space for approach and use.

I don't want to have to go into all of these, but suffice it to say that this is how we

think of design and universal design. It's not just about being easy to use; it's a lot of

different things all wrapped up into the design itself.

So when we first got funded as an RERC six years ago, workplace

accommodations hadn't been funded as an RERC for a number of years. And when it had

been funded as an RERC, it was focused mostly on “one-of” designs and coming up with

30

new products and technologies for particular individuals. There were few published studies

that described the type of accommodations or examined their effectiveness.

The degree to which a common set of accommodations that could be used to

address similar problems across individuals was dependent on the expertise and the

experience of individuals in the field. In other words, the field was driven by practice-based

evidence rather than the other way around, and this is similar to what John was talking about

this morning. We have little evidence-based practice in the field of workplace

accommodations. As a result, this led to a lot of unnecessary reinventing of wheels and one-

of-a-kind accommodations that might not meet the needs of all of the users.

What I'm going to talk about is a couple of projects that we started in the first five-

year cycle of our funding that fed into the research that we're now continuing on in the

second cycle. (We just finished our sixth year.)

There are two studies that I want to focus on. One study described the types of

accommodations made and for whom (remembering that we have no history of research in

this field, and we were starting from scratch). So we really wanted to know, what was out

there; what people had, and try and understand how they fit and for what kinds of limitations

people were being accommodated. We also wanted to understand the use of these

accommodations and their effectiveness.

The first study was a national study. We ended up with 510 employees with

disabilities. The chart is really just there to let you know that what we did was we looked at

people with motor limitations, cognitive limitations, and sensory limitations. The majority

31

ranged in age from 18 to over 65. I think actually we had people who went up into their

early 80s in the sample.

So I'm not going to go through all the results, but what I want to do is show you a

couple of slides that illustrate the kinds of accommodations in several of our disability

categories or our functional limitation categories.

For example, people with mobility issues, their accommodations mostly focused

on basic access, the kinds of things that you might find in the ADA, like modifications to

restrooms, accessible parking, and ramps.

Basic accommodations to the building were the most common-- remember,

however, that the ADA doesn't cover this. The ADA covers these kinds of accommodations

for the public, not for employees. So for employees, while there may be a ramp into the

building, that ramp -- and that ramp might meet ADA guidelines--doesn't necessarily mean

it's a reasonable accommodation. A 1-in-12 may not be a reasonable accommodation, given

the type of functional limitation that that an individual has.

So, basic access fits under the principles--the universal design principles of

equitable use, low physical effort, and size and space for approach.

Also, there are a number of different kinds of accommodations for people who

have difficulty positioning themselves, and these accommodations mostly fit into

accommodations for the work stations. They are modified work stations, ergonomic chairs,

steps or lifts at the work station to raise somebody up. And these fit into the principles of

flexibility in use, low physical effort, and again size and space.

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Now, for people who need vision accommodations, visual technology. Note: we

have gone from basic access to work station, and now we're getting into technology kinds of

accommodations. Accessible documents, reading guides, Braille displays, pretty much these

fit into the universal design principle under perceptible information.

And then, there were people who got no accommodations at all--we had fairly

large percentages of individuals who got no accommodations at all, yet had functional

limitations. This is really important because it tells us that people are working at some level

and not being accommodated for all of the functional limitations that they have.

The implications for universal design out of this particular project were that

mobility, (and that is sort of lumping all of the mobility issues together such as moving,

positioning, coordinating movement) basic access issues to common areas and work

stations, fit into the universal design principles of equitable use, low effort, low physical

effort, and size and space for approaching. People who had dexterity problems -- that is

manipulating objects -- generally had adaptive work stations and computer hardware that fit

into the flexibility and use tolerance for error and low physical effort.

People with sensory issues had adapted computer hardware, but for perceptible

information and tolerance for error.

And finally, people with cognitive problems, those with perception attention and

memory deficits, used primarily memory aids and those were fit under the categories of

simple and intuitive use and tolerance for error.

The second survey we did was with clients of Georgia Voc Rehab. These were

individuals for whom the Center that I work for had made workplace accommodation

33

recommendations over a 10-year period prior to the RERC starting. We went back to those

clients to look at what kind of accommodations had been made, how effective they were,

and how long they used them.

One of the important things we found was that in terms of longevity, 38 percent

never used the accommodations or discontinued their use within a year. And 66 percent

discontinued using within five years. We found that although 80 percent reported being

satisfied with their accommodations, 67 percent discontinued use over five years.

Well, why? The most common reasons for disuse were that they had obsolete

technology, failure or incompatibility of accommodations, and a lack of training or they left

their job.

We found that over half of those who left their jobs took only part of their

accommodations with them. Their accommodations didn't fit with what they needed for

their new jobs. So they were then not used either by them or anybody else--they were

totally obsolete.

What does this tell us about universal design as an accommodation? Well,

universal design can reduce the need for and the cost of individualized accommodations.

All those accommodations that people are getting, over and over again, the same

accommodation, if the workplace itself, if the work stations, if the computers, if the

technologies were universally designed in the first place, it would reduce the need for all of

these specialized designs, especially those that aren't going to be used and those that are

becoming obsolete because people are moving to new jobs.

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Universal design can reduce the amount of time to start or return to work because

you don't have to wait for your accommodations. You can use what's already there. There's

less need to go with an individual across jobs, so that they don't have to take things with

them. The accommodations are already there when they go to a new job.

Universal design can facilitate work and social inclusion, which is also linked to

positive work impacts. And finally, universal design has benefits to multiple workers with

or without disabilities. In other words, everybody can use it, not just the individual with the

disability.

This sounds great, but what are the key barriers? The first deals with the

multiple disabilities and multiple employees. A design may not qualify as an

accommodation if it has benefits to everybody in the workplace. It has to be shown to have

benefit just to the employee with the disability to qualify as an accommodation. The

problem also is this can increase the initial cost even though it reduces the life cycle cost

because you don't have to keep replacing things over time.

The second issue is that we consider work as an activity, not work as a social

behavior. As long as we consider work as an activity, accommodations are based on an

individual employee performing essential functions of the job; that is, essential job activities

as determined by the employer.

However, social inclusion in the workplace, that is, being able to participate as an

employee, is not an essential job task. We don't consider it that. Again, universal design

helps to accommodate inclusion in the workplace, yet it's not considered an accommodation.

35

So, what are the key policy issues? For me the key policy issue is defining the

paradigm and the metrics that define positive employment outcomes. And what we need to

do is we need to re-evaluate and redefine what we are currently doing, which is driven by

ADA assumptions about performance of work activities.

The ADA presumes that inclusion follows function. If people can perform work

tasks, oh, they're going to be included. They're going to be able to participate in the

workplace. That really doesn't quite happen.

The other way of looking at this is through the World Health Organization

understanding of the international classification of functioning disability and health. Their

idea is that both activity and participation -- that is inclusion -- are equally important

constructs and they are independent of each other. They are interrelated, but one doesn't

follow the other. You need to address both of them, and if you don't address both of them,

and you only address the activity (which is what we're doing) then we can accommodate

people and they can work, but will they be happy, will they participate, will they be

included, and will they have positive outcomes beyond the physical ability to produce at the

workplace. That is another issue.

Thank you. (Applause.)

Presentation of Research Findings--Richard Balkus

Mr. Balkus: I am very happy to be here, and I thank NASI and NIDRR for the

opportunity to speak to you this morning about some of the research activities that we have

ongoing in the Social Security Administration. I think it's important that we try to improve

the communication that we have between each other as far as our research. We all share a

36

common goal, and that is to facilitate job retention and return to work for people with

disabilities.

I am also very pleased to be here as a somewhat new NASI member.

First, being a part of the Social Security Administration, I think I need to point out

that we have a new strategic plan and disability plays a very important part in that strategic

plan. Two of the major goals are devoted to disability issues.

The first one is to work on the backlog that we have pending at the hearings level

and to prevent the recurrence. I think the second part of that objective is important.

Second is to improve the speed and quality of the disability process.

We have several research activities that are relevant to both of these objectives.

One thing in our toolbox now is an electronic disability claims folder and that helps

us expand upon our ability to do research--look at some of the issues that are out there

regarding differences in adjudication and program outcomes at the initial determination

level among states. State Agencies referred to as Disability Determination Services (DDS),

issue the initial determination, The electronic disability claims folder also facilitate looking

at differences in adjudication between the initial determination and the decision that is made

by the Administrative Law Judge (ALJ).

Part of the research agenda includes analyzing options for simplifying work

incentives. The office that I am in, the Office of Program Development and Research, is

also responsible for the work incentive policy for the agency except for the Ticket to Work

Program, and that's Sue Suter's responsibility.

37

But a big part of our research agenda is the conduct of demonstration projects. I'm

going to talk to you very briefly this morning about four demonstration projects. And I can

tell you, every time I do a briefing on a demonstration project for a senior manager within

the Social Security Administration, the issue of translation research comes up.

How is this going to translate into policy? How is this going to facilitate our

administration of the program?

I can make some connections here, and some of those connections are completely

within the control of the Social Security Administration, or may require working with our

partners on the Hill, to effectuate. But many connections here in terms of some of the

interventions that we are testing and hoping will be evidence-based practices--that are best

practices-- require the cooperation and collaboration among other agencies within the

Federal government to make it work.

I'm going to go through four studies. Three of them – including the mental health

treatment study -- are already out there. They're being conducted.

Okay, the mental health treatment study. This involves our disability insurance

beneficiaries, who have either schizophrenia or an affective disorder. The study has an

experimental design. It's a very rigorous evaluation that we're going through. We have

2,000 people in the study, 1,000 in the treatment group, and 1,000 in the control group.

We have 23 treatment sites across the country, and most of these sites are mental

health providers. It involves a two-year intervention based on the individualized placement

and support model that originates with our partners at Dartmouth College and one of our

principal investigators, Dr. Robert Drake.

38

It's important to say here, we're talking about competitive employment for these

individuals; we're not talking about supported employment.

We are about halfway through the field portion of the study, and already we are

seeing some encouraging results. Thirty-four percent of enrollees in the treatment group

were recently employed in competitive jobs as opposed to 21 percent of the control group.

I must point out for this particular study, the participants are volunteers. These

people expressed an interest in going back to work; but still we are seeing, I think, a good

difference here, and we're hoping that this will continue and translate into a finding.

This program requires a lot of hand holding for these beneficiaries--a lot of

support, even once they get back to work.

One thing that we are looking from the perspective of translation research is

encouraging our mental health treatment sites is to move into the employment network

world upon completion of this study, and focus on customized support for this population in

assisting their return to work.

The Accelerated Benefits demonstration project is designed to provide health care

to individuals during the 24-month waiting period for Medicare. For the disability insurance

program, we not only have a five-month waiting period before you are entitled to benefits,

but once you are entitled to benefits, you then have a 24-month waiting period for Medicare.

So, in this demonstration we are providing health care coverage for individuals

who are uninsured during this 24-month waiting period.

One of the first things that came out of this study from the enrollment period, is a

slightly lower uninsured rate during the 24 month waiting period than what we expected and

39

it’s running about 20 percent of beneficiaries that are in the waiting period for Medicare do

not have health coverage. Most (we found about 80%) of them who do have health

coverage, have private coverage through their spouses or through their former employers.

Some have COBRA coverage; others get workers comp, Medicaid, or coverage as a veteran.

So far we're finding out -- and this is somewhat consistent with other research that we have

ongoing here -- only about 20 percent of disability insurance beneficiaries during that 24-

month waiting period are actually uninsured.

Again, what we're hoping to do here is by providing health coverage, for that 20

percent - we’re stabilizing their conditions, we're getting them to a better state physically

and mentally to go back to work.

The Benefit Offset National Demonstration is a project we haven't started yet. I

know some people around the room remember that this goes way back to the Ticket to

Work legislation passed in 1999. My main reason in being here today is to convince you we

are really going to do this project.

(Laughter.)

And, we are moving ahead. We accepted in September the final design from our

contractor. I've been in this office, in this position, for about a year, and during this year

we've been going back and forth trying to finalize the design that we think we can actually

put out there, operationalize, and get good results. For this particular intervention, what we

are doing is eliminating what is often referred to as the cash cliff. I think many are aware

that once beneficiaries complete their trial work period and their grace period, they go into

the extended period of eligibility, which is a 36-month period from the end of the trial work

40

period. If they're working above substantial gainful activity –SGA -, they get no benefit; if

they're working below SGA, they get their full benefit. What this demonstration means is,

for those individuals during that extended period of eligibility who are working about

substantial gainful activity, (for most people $940 per month in 2008) their benefits will

only be offset $1 for every $2 earned.

That's stage one.

In stage two, we're also including some additional support as far as benefit

counseling--what we're calling enhanced benefit counseling. This is basically actively

contacting the beneficiary and advising him or her of the work incentive, helping them get

back to work, and providing some ongoing support.

This gives you what this whole experimental design is about. It's national, it's

massive, and it’s going to be a challenge to operationalize.

I might add that we just completed the business process for this, working with our

partners in Operations within the Social Security Administration. And we are working on

the development of the system requirements at this particular point. I think it's an

accomplishment, at least within this last year that we have figured out how to move forward

and have gotten our partners to agree on final design.

These are the 10 areas that the project will be conducted in. These are Social

Security areas, so as you can see, they encompass like Boston, or actually several states

there, but for other areas it includes many metropolitan areas.

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This next year we will continue with designing the business process. The big thing

this next year is actually building the automated system that is required to make this

demonstration project work.

The last demonstration I wanted to talk to you about is the Youth Transition

Demonstration Project. This is mainly our SSI child population. As many of you know, we

have over 1 million children under age 18 who are receiving SSI benefits. For many of these

children, it becomes a life sentence in terms of dependency on the SSI benefits. The SSI

benefit, by definition, means that the individual is going to be living in poverty or near

poverty for a very long period of time and for many of these children for the rest of their

lives. So for this particular demonstration project we're testing ways to break this

dependency by working with SSI youth in transitioning to adulthood. It's an experimental

design. We have six random assignment sites involved in the project. The types of

interventions for each of these sites vary, but they have to have an individualized work-

based experience as the main intervention. There are interventions for youth empowerment

and family supports. We engage that child in their last year in high school in terms of

making decisions, in terms of what they want to do, and try to help them make that dream

occur.

Also for these individual sites, we have many linkages. Our other partners, other

Federal and state programs are providing support services, and a big item is benefit

counseling, because there are a number of waivers for this program. We grant waivers to

these participants, and these waivers increase their ability to keep more of their income, but

42

also their ability in terms of asset development, either through a plan for achieving self-

support (PASS) or an individual development plan.

This gives you some of the timeline of the history of the project. We did start out

with cooperative agreements in a number of sites. It wasn't a random experiment at that

particular point, but around 2006, we did move to an experimental design and we now have

six sites.

Three of them have been added recently, and you can see we are still doing

enrollment for one of the prior sites, but benefit enrollment will continue into 2010.

One of the preliminary findings -- and this is very preliminary -- is that we are

seeing -- when you look at our overall population of SSI children for this particular age

range, we are seeing some success here in terms of the treatment group and getting them

into competitive employment.

(Applause.) PANEL 2: Response from Experts in Policy and Implementation Laurel Beedon, Moderator: Thank you. My name is Laurel Beedon. I'm a

Senior Fellow at the National Academy. Let me introduce to you the members of this panel.

Chris Button is Supervisory Policy Adviser for the Workforce Systems Policy Team in the

Office of Disability Employment at the Department of Labor.

Sue Suter is Associate Commissioner at the Office of Employment Support Group

Programs at SSA, and she has been working in the disability area forever, as well. She

received her MS in clinical psychology from Eastern Illinois University.

43

To my left is Dave Wittenburg, a Senior Researcher at the Center for Studying

Disability Policy at Mathematica. He received his PhD in economics from Syracuse.

These three folks are going to comment from the policy perspective on what the

researchers have found practically.

Before we start, I want to thank NIDRR, in particular Margaret Campbell, for

doing such hard work getting NIDRR together with NASI and Education and Labor and

Social Security and the tanks, because we don't usually get to talk to each other.

Response from Experts in Policy & Implementation—David Wittenburg

Mr. Wittenburg: Well, I'm very happy to be here, and I very much appreciate the

invitation from NASI. I too am a NASI member, and I'm proud to say that my dues are up

to date. This may in part why I received an invitation to talk today.

Today is very exciting because I think each of the panelists covered an issue that is

really central to disability policy and some of the issues we research at Mathematica's Center

for Studying Disability Policy.

The key issues that I picked up in the presentations this morning were each of the

presenters described one of the following three issues:

First, financial incentives to maintain self-sufficiency. Second, fragmentations

within the current systems of support. Or, third, the timing of the intervention approaches

and specifically the provision of early intervention approaches.

The target populations really differ across projects. In the asset accumulation

project, we are talking mainly about taxpayers. In the two work projects, the workplace

44

intervention projects, and the accommodations projects by John and Jon, we're talking about

workers. For the SSA intervention, we're talking about disability beneficiaries.

The key question that I have been tasked to talk about today how do we translate

these findings into an improved public policy for people with disabilities?

A second key question going beyond that is ultimately if these initiatives are

successful, what are the implications for disability policy?

The projects in the previous session that will likely be more successful include

policy if they have convincing evaluations.

So, my discussion is really going to focus on the role rigorous evaluations play in

moving policy decisions and provide some examples of evaluations and actions, specifically

drawing on a couple of the presentations earlier.

Before I do that, I just want to justify why evaluations are important for policy, or

maybe a better topic here is why they should be important for policy.

There are three main reasons that rigorous evaluations are needed. The first and

probably the most important is that we need to ensure that policies do not unintentionally

cause harm to people with disabilities or other stakeholders.

Specifically, do people who participate in these programs fully understand their

benefit, and are they making informed decisions to improve their self-sufficiency? A

second reason that we need evaluations is that policymakers are going to need information

on whether their investment in these programs is paying dividends. Are the social benefits

generated from these programs larger than the cost? And I'm sure you'll hear a lot about the

benefits and costs today in the presidential debates, more generally.

45

And finally, and this is particularly important for rigorous evaluations, if these

programs are successful, we will need a rigorous body of information to translate these

findings to a broad policy audience, particularly an audience that will include skeptics who

may not want to fund any additional during a period of very, very tight budgets. In the past

couple weeks we've seen many competing priorities for Federal funding. So I'll go over case

study for evaluations in action. John, you mentioned this in your presentations this morning,

but the supported employment interventions I think are really an outstanding example of

how evaluations can influence public policy.

An evaluation of supported employment programs for people with psychiatric

impairments is the best case study, and there have been several studies completed -- several

small-scale studies that have been summarized by Gary Bond, and there have been later

follow-ups led by Judith Cook's team in the employment intervention demonstration

projects across several sites.

The evaluations of these demonstrations started with relatively small tasks of

supported employment interventions. And starting small is very, very important. After

repeated success, these interventions were documented and rolled out in several areas. The

evaluation showed effects on key outcomes that policymakers readily understood and was

convincingly larger than the outcomes observed for traditional supports.

Based on the success, Drake and his colleagues at New Hampshire had noted that

supported employment practices had been accepted as the evidence-based practice. And we

heard that term- evidenced based practices- a number of times from our presenters this

morning.

46

As John mentioned in his earlier session, it's actually one of the few places where

we have evidence-based practices for employment support for people with disabilities, and

some might argue it's the only place in the VR world.

These findings from the supported employment evaluation have been an important

driver in the expansion of supported employment services for people with psychiatric

impairments over the past 20 years. These services are increasingly required by Medicaid

agencies and state mental health agencies.

Let me go over a second case study, which is the ongoing accelerated benefits

demonstration. And I'm going to go over that one because I'm intimately involved in it as

one of the principal investigators on the project with MDRC.

As Richard noted, the accelerated benefits demonstration offered health insurance

and other supports to a population of newly entitled disability insurance beneficiaries in the

waiting period. Again, we started small. We started with a small pilot base and identified

66 people without health insurance.

Of this population, we randomized 27 to a control group, 13 to a group that

received that health benefit, and 26 that were randomized to a group that received health

benefits and other employment supports.

(If you're writing this down very quickly, don't worry about it, because I've got a

policy brief that describes all this, which I'm happy to hand out at the end.)

But some of the notable findings from this policy brief are that all people who were

eligible, all the uninsured people who were eligible for services actually agreed to

participate in the services.

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Now this may seem obvious to people that they want health insurance, but the fact

that they actually consented to participate and took up health insurance I think is a very

compelling finding because it's based on an outcome in response to an offer to health

insurance benefits, not based on a perception from a survey. It's an actual action taken by a

person with a disability.

Additionally, we found substantial variation in the number of beneficiaries without

health insurance, with much higher uninsurance rates in our one Texas site, and much lower

uninsurance rates in our Minnesota site.

While we don't have long-term findings like we do in the supported employment

evaluations, the early findings do tell us something about the demand for health insurance

among uninsured beneficiaries, and the differences in uninsurance rates in the nation more

broadly.

Based on the success of the early recruitment phase, SSA has authorized the whole

rollout to 53 metropolitan areas, and eventually what we hope will happen is that the

evaluation findings will provide information on the effects of providing health insurance and

other supports to people in the waiting period so we can more rigorously evaluate the effects

of the waiting period on beneficiary outcomes, particularly health, employment, and

program participation.

In summary, I think this morning we heard a lot of interesting strategies to help

different subgroups of people with disabilities. To quote Winston Churchill here, "However

beautiful the strategy, you should occasionally look at the results." And I think that should

be really a theme for disability policy.

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So returning to the questions I raised earlier, how do we translate these findings

into improved policy for people with disabilities?

I think that the effects of these interventions will be enhanced if the research teams

can document their progress using numbers that are easily understood by policymakers --

concepts like employment, income, program expenditures are especially useful outcomes to

show them.

These are key outcomes to the support employment demonstrations, and I know

there are key outcomes in all the SSA demonstrations.

In general, the most compelling research from all the projects that I heard this

morning takes us beyond the perceptions of what participants want to do and gets us into the

field of what they're actually doing, and what their actual outcomes are.

Those are the types of things that I think will be most convincing and most quickly

leading to policy change.

For more established projects like the SSA demos, which have already been

refined, the use of rigorous methods should be very convincing to a wide audience.

However, I think the key challenge to the demos, because they include a relatively

large upfront cost, is to encourage patience by policymakers so we can understand things

like job retention, which you just mentioned.

Hence, it will be important for SSA to continue to track these key outcomes over

multiple periods even after the initial evaluations end. Ultimately if these initiatives are

successful, what are the implications for disability policy?

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Say we find positive impacts and outcomes like employment and income across all

the interventions, would we have moved disability policy forward? I think from a funding agency perspective, there's no question if the demonstrations

are successful, they should help improve the operations of these agencies.

For example, the SSA demos, if they're successful, will help more beneficiaries

return to work. However, from a societal perspective, even if each of these interventions is

successful, it might be better to incorporate components of these interventions into a much

broader policy set of reforms rather than to implement them in a piecemeal fashion.

The primary challenge that we are hearing today -- and this will lead to my

comment of targeting different subpopulations -- is that being implemented within a

fragmented system may unintentionally create further complexities for people with

disabilities. So in light of the expanding government deficits and debts, there is a need to

test more ambitious integrative initiatives across the government programs and test these

issues in different formats. And there is a need for interagency collaboration to test these

interventions, and there are examples out there of these interventions.

One example being is the Pathways to Work intervention in the United Kingdom,

which combines a series of employment supports for the disability application process and

tax incentives as well. And interestingly, it shares a similar name as our session here,

Pathways to Success.

So I'm going to end on that note, and hopefully we can talk more about the types of

broad policy issues that we can test, if there's time for discussion.

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Response from Experts in Policy & Implementation—Christopher Button

Ms. Button: First let me, on behalf of the Department of Labor and my Assistant

Secretary Neil Romano and my colleagues from the Department of Labor, Richard Horne,

Kerry Lida, Susan Picerno who join me here today, I just want to say thank you for

including us on this important panel.

I have been really struck this morning by the importance of this kind of activity,

and how we need to be doing it more often, quite frankly, because it's been very, very

interesting and helpful.

For those of you who don't know ODEP, the Office of Disability Employment

Policy, we are the newest, probably the smallest agency at Department of Labor. We do not

have any direct jurisdiction over any specific program. This makes it a challenge but it also

gives us great energy and ability to challenge all our partners, both within the Department of

Labor and outside the Department of Labor, because our charge is to work internally,

whether it's with pension welfare benefits, whether it's with the training administration,

whether it's with the international office, or any of the offices at Labor, or whether we are

partnering with NIDRR, with Education, or with our good friends at SSA, to try to figure

out collectively how to move an aggressive disability employment policy agenda that would

result in what we call real jobs at real wages for people with disabilities, including people

who have previously been kind of shoved away and segregated and assumed to not have

employment potential, because we believe that they do, and we believe that there is

sufficient evidence to document that fact.

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So, that's what we have been doing. I think in terms of today what I want to do is

respond to the "what needs to happen" question, while at the same time reflecting on some

of the themes that I heard by our esteemed presenters.

One of those relates to the importance of partnership. I've heard partnership from I

think every presenter. John, you talked about partnership with the employers, working

together. Johnette, you talked about bringing in whole new groups of partners with the

financial services industry. Richard, you talked about other Federal partners and

collaboration across the system. And, John, of course, you with your whole universal design

approach in terms of impacting not just people with disabilities but the generic world.

I think that that is something that we all need to be focusing on. I think particularly

at Department of Labor, we look at leveraging not just the disability-specific more

traditional partners, but we are trying very hard to get out into the generic world, to the

Department of Labor programs, to the Department of Commerce programs, to the SBA, and

trying to figure out how can we influence the kind of policy direction that they are taking by

the information that we can show them, by the research, by the demonstration data, et cetera.

But that partnership is absolutely essential for influencing the direction of policy.

And it's not just disability engineering systems, it's bringing in those new partners, it's

Federal level, state level, local level, and it's public and private.

Collaboration is very hard. We just finished a six-year demonstration at ODEP

that we refer to as our customized employment demonstration. It went to the one-stop

career centers across the nation, and through 32 six-year demos.

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Those one-stops were charged with bringing to the table of the one-stop systems

partners who were not traditional partners of that generic system. Those partners could be

benefit plans, Social Security, the Small Business Administration (SBA) people, greater

involvement in the rehab system, and/or the economic development programs.

We found that when we could bring them together with a common goal around an

individual person, that there was great expertise and resources that could be leveraged.

Which brings me to my second thing that I heard this morning, and that was the

importance of kind of blending, grading, sharing resources, possibility the use of self-

directed accounts.

Johnette, I loved your slide for kind of the way it was and the direction we're

moving in.

How can we use these resources that are potentially available to people with

disabilities through all these different systems, roll them together into accounts that that

persons can control and direct themselves?

How can a ticket be combined with access to an IDA, with access to an ITA, a

Department of Labor jurisdiction. With access to other funds that might be available under

rehab. How can it all be rolled together and that people be given the choice to direct it

themselves?

And again, this is something that we need to figure out how to do. We tried it in

our customized initiative. It was one of the areas that really needs a lot of additional

exploration because it's real hard to do.

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Someone told me once that collaboration, if you look in the dictionary, the

definition is to willingly cooperate with the enemy.

(Laughter.)

I would think our enemies are not enemies, but sometimes we kind of get caught

in our own bureaucracies, and it can be very hard.

So that's the second thing.

Third, is universal design. This is really, really important. And I think for the

whole future of our world, not just for the future of people with disabilities. And I think we

need to look beyond universal design in terms of environment and look at programs and

services, how we organize our programs and services, and how employers organize the way

they put their businesses together.

Let me give you an example of that. We have in the Department of Labor right

now a major initiative for mature people-- many of us around the table would fall into that

category because under some laws it starts at age 40.

And as part of our initiative, we are working with 10 different Federal agencies.

Secretary Chao pulled together an interagency work group, and we are looking at various

laws, looking at how we can create initiatives to keep older workers, mature workers,

experienced workers in the workplace.

One of the things that we have found as we work with these other agencies is, No.

1, the importance of flexible workplace policies and continuing to engage the mature

worker.

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What is one aspect of a flexible workplace environment that customizes the job

tasks that those individuals do? I might be a mature worker. I might be, you know, really

not wanting to do 60 hours a week anymore, but you know what, if you look at that job

description and you let me do essential job function No. 1, 5, 7, and 10, I'm happy to stay on

at a slightly reduced workload working on things that I want to work on.

You are customizing around that individual. And to the extent that we can learn to

use our policies to be able to customize employment situations for people with disabilities,

we are going to be able to not just keep them in the workforce -- retention, John, as you

talked about -- but bring them into the workforce.

And that has been documented very powerfully, I believe, in our customized

employment initiative where we have people actually getting to move off of some benefits.

It is a small demonstration, I understand, but it would be great to expand it. That will be

part of our collaboration activity as we look to some of our Federal partners.

Last thing--self-direction and partnership.

While we're all talking, it's kind of hard to follow all the arrows. I think the need

for technical assistance and through that technical assistance the building of leaders. We

have a lot of information available to us. We have a lot of demonstrated, documented

practices. I think that we have a body of research that shows where you have people in

leadership positions who are committed to certain directions in terms of policy and practice

that you can make dramatic change.

And to the extent that we can create leaders who are committed not just to

employment but to enhancing, as we say in the Department of Labor, profitable employment

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through leveraging all these different things, all the asset development possibilities, you

know, partnerships across various systems, then I think we are all going to be in better

shape.

Thank you.

Response from Experts in Policy and Implementation—Sue Suter

Ms. Suter: Thank you. Could I just say "ditto"?

(Laughter.)

I also want to thank NASI and NIDRR.

I'm going to talk about an example of moving policy into operations. As a person

who has looked at policy in both state government and Federal government, it scared me

that we were making policy and not paying as much attention as we should to the research.

And it still scares me. So any time that we all can come together, because there is so much

good research out there, and have the research inform the policy, that that helps a lot.

I'm going to talk about the Ticket to Work Program. I think sometimes the time we

spend on looking at the payment is not enough to employment networks-- how do we get

beneficiaries involved in the program?

But I want to go back and talk about the Ticket to Work legislation, and how smart

the legislation was to get to where we are now. Susan Daniels is here. She gets credit for

that, and Marie Strahan, and Kathryn Olson.

The Ticket legislation starts with what Richard's doing, and David. In 1999, the

legislation built in a yearly evaluation for the Ticket program. And Richard Balkus is in

charge of the evaluation with Mathematica. So it means that outside our component to run

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the program, we have an independent evaluation, which is extremely helpful to us, to

continue to inform us and improve the program.

The evaluation is very important to us in terms of how we can target who is most

likely to use the Ticket program, because we know it's not for everybody. So if we can look

at who is most likely to use it, it’s helpful. We'll still obviously continue the program for

everyone, people have a right to have the ticket, but we can look at the profiles of who is

most likely to use it.

The second thing in the legislation that was very forward thinking in terms of

policy operation, was it gave the authority for our commissioner to make changes after a

couple of years into the program. And because we could do that, we have a new Ticket

regulation that came out July 21st [2008] that could recognize that and make the changes

based on the evaluations, stakeholders, and what we were learning about the program. So I

think that's another example of how the legislation made better policy and us better able to

make the changes that we needed to in the program.

Another part of the legislation created the Ticket to Work panel. That was

stakeholders, different stakeholders appointed by Congress and the President who could

continue to advise us on how to improve the program. So we had that external expertise in

running the program. That was extremely helpful.

We also had in the legislation the Adequacy of Incentives group. Again we brought

external stakeholders in who could continue to look at the program and help us improve it.

The other important thing--I'm hearing it in some of the themes this morning--is

that the legislation also called for benefits planners, and now it's called the Work Incentives

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Planning and Assistance Program. And one of the things we've heard over and over again is

it's so scary to try work, because [people don’t know] what it will mean for our benefits?

So people in the Ticket program, in watching the program, knew that we needed

people on the ground in community organizations that had the credibility with our

beneficiaries to assist them in benefits analysis, in benefits counseling.

We also, through our research -- John Kregel at Virginia Commonwealth does the

training for our Work Incentive Planning and Assistance programs (WIPAs), and we also

have the protection of the efficacy programs. We learned, and we learned this morning, too,

people decide to go to work in incremental steps. So we changed the onus in terms of

benefits planning not only to benefits planning and analysis, but to work incentives. We did

this to stress the work incentives, and to follow up with the individual that they're serving,

because three months down the road or six months down the road, you might need to call

and say, "Where are you? Have you thought about the ticket?” All because people make

the decision incrementally, and it's scary, and it's step by step to go to work.

With those fundamentals in legislation, it's enabled us to do a couple of things to

improve the Ticket program.

Before an employment network got paid milestones, when the person worked at

substantial gainful activity level; once again that's a really high threshold for people who just

want to try work. So under the new regs, we can start paying employment networks now for

people who are working part time, and that makes a huge difference in the mental health

community, in some of the communities where you have peaks and valleys of working. So

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we can start to pay now for part-time work, get that person to try work, take that first

incremental step. That's one of my favorite parts.

Also, in the new Ticket regs, we're paying more milestones and we're paying more

money to employment networks, but we are also saying that one-stops are qualified to be

employment networks, like the VR agencies. Because we think that's very important. The

Ticket program was started to offer choice to our beneficiaries about trying work and about

services they need and supports they need to get to work.

John Kregel talked about staying attached to job. We all know that. That is so

significant. I think that and early intervention is what we know. So is staying attached to

the job.

Under the Ticket program, employers can be employment networks, and besides

working with our traditional community service providers, we are working with Project

Search, who has become an employment network, with Walgreen's. Because, as John talked

about, when you can get the ongoing support right there at work and interventions right

there in the business at work with the employer, a person has more chance of staying on the

job and keeping the job.

And what we say to employers, if you become an employment network, chances

you are serving our beneficiaries anyhow. So become an employment network, and we will

provide you with that funding, and you can use it, as the other John said, for

accommodations, for anything that you need.

The other thing about the Ticket program that I think addresses some of the issues

that we learned about today is that money is flexible. It's an outcome-oriented results-based

59

program. So when a person is earning a certain amount of money, we pay the employment

network, which could be an employer. And we don't care, other than being good stewards,

we don't care what that money is used for. All we're interested in is that person is earning a

certain amount of money.

So this is totally flexible money to employment networks, whether they're

community service organizations or businesses, and as was stated so well this morning, we

know a lot of times it's just an issue of getting your car fixed or having childcare. That can

make a huge difference whether you stay on the job. Under the Ticket program, the money

is totally flexible to the individual and to the employment network.

So that allows, we’re so pigeonholed sometimes on our funding, it allows that

flexibility that people need to just provide those things that can really make a difference in

somebody's life.

The other thing is partnerships. There are two really big challenges in the Ticket

program. One is a person that's a beneficiary doesn't get a ticket until they become a

beneficiary. So they have to prove to us that they can't work for a year or two, and then you

literally say, "Good news. You can work." It's a little confusing to people. So that's one of

the challenges we have.

The second challenge is the infrastructure out in the community. We're 50 people

in Social Security and we have our area work incentives in Social Security, and we have our

local office, as all of you know. They're working on backlogs because people shouldn't

have to wait to find out whether they're eligible for benefits, so we're working on backlogs,

so that is another challenge for us is infrastructure out in the community.

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The legislation called for the WIPAs in the PNA, in the employment networks, to

build that infrastructure. Our challenge is -- and, Dave, I think, said it -- the fragmented

systems, and Richard said it. Our systems are so complex. Our incentives are so complex

that that just adds to the confusion about trying to work and the fear about trying to work. So

by having people in the community that can walk people through this, that helps.

We have to be concerned about the supply and demand. When we get

beneficiaries to assign their tickets, do we have the supply out there in the community to be

able to serve them? Because the worst thing would be if somebody comes to us with a

ticket and says, "I want to go back to work; I want to try it," and we say, "Oh, sorry, there's

no services in your particular community." So that means getting the supply and demand

right.

The other thing that I think everybody said -- Johnette said it, John said it -- the risk

for people is not the disability, and that gets to what Chris said about the environment. The

risk is not the disability. The risk is poverty, and that's what we want to address in the

program.

Discussion by Members of Panels 1 and 2

Ms. Beedon: The research panel got cut a little bit short, so what I would like to

do is provide the opportunity for the researchers to ask each other questions for about five

minutes, and then we'll talk here.

Ms. Campbell: Does someone have a ready question? Of each other? This is

your time to ask each other questions.

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Mr. Kregel: I would like to ask Johnette one question because it's really striking

the way that she pulls partnerships together that are nontraditional, from those of us who

come out of a more traditional vocational rehabilitation environment.

The programs and the agencies that you bring together, the target of their services

is oftentimes families, and in the systems that we work in it's the beneficiary. Or it's a VR

client. Or it's a person with a disability.

When you start merging your efforts with people who serve the greater poverty

community, then the unit really changes, so that you're providing assistance to a family unit

or a group of individuals as opposed to a specific person.

I was wondering as you cross both those arenas if you could talk a little bit about

how those of us in the rehabilitation or the NIDRR community can think in terms of families

as a unit of service.

Ms. Hartnett: Thank you. That is probably I think the single most, biggest

challenge for us, is bridging new partnerships with nontraditional partners.

You know, we started on a national level with our best new friend, IRS, ironically,

in the Education division, and you know, from there, FIDC, with their MoneySmart

Program which they now have the first ever national in Braille curriculum. They also have a

youth one, and they have a supplement on disability.

The U.S. Department of Treasury and Financial Literacy is very interested in

looking at education in our issues of our kids number transitioning and financial education.

We take it down to the local level. And what I do when I go into these

communities, we hold a meeting, for example, we were in Philadelphia. They're a new

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member. We actually pay an existing coalition. I pay coalitions, community-based

organizations that are not disability, okay. And I give them -- we started out with like one

and two thousand dollar grants. I mean this is so embarrassing.

I stand up there at these big kickoffs for the EITC, with the big banks that have the

$50,000, $25,000 checks, and we've got our $2,000 check. And this is a little work group

within the existing coalition, and we said, you know, we'll give you a little money to have a

meeting, and I'm going to come and IRS is going to come, and we have other people that are

going to come, and they're going to start to talk about helping you increase your

infrastructure and your service for people with disabilities.

And so the No. 1 thing the first couple of years was access and accommodation.

People were so nervous. They thought we were ADA Nazis, and we said, no, we're not;

we're not going to do this. We simply want you to know. Anything you do, advertise it,

make sure you put a symbol on it, you make sure you make it accessible.

So what we've done over the past four years, I think, is develop a trust with

nontraditional partners on the ground. That is what's happened in the past few years, which

is very interesting. I'm a member of the National Community Tax Coalition, which

comprises the leaders in the country that are doing the community-based tax prep. They

helped over 3 million people last year get free tax prep. And now they're saying to us, “Gee,

you know what, 25 percent of the population in Chicago is disability.” “Wow. Twenty-

eight percent of the population in San Antonio is disability.” “San Francisco, Oakland, 31

percent disability.”

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So all of a sudden now, we're getting new attention because people are saying, this

is our core, and we have never really looked at them before.

In the meeting that we just had in San Antonio, which IRS helped with the

transportation so that we were able to invite rehab, our deaf community, and our blind

communities, we had people talking about their networks and sharing. I mean Social

Security has always been there, Labor has been there, and the IRS. We have this whole

group of all the major veteran organizations thanking us for inviting them, even though we

know the veteran disability laws which we are starting to address in our tax division, is a

different universe. But it's beginning that conversation.

So it's been giving them a little bit of resources and beginning the dialogue and

bringing together -- I bring together as many of the Federal people on the ground in the

community.

Ms. Button: Thank you. And thanks, Johnette, for that wonderful answer. You

guys are really pioneers in this area, and I think that what you're doing is so fabulous.

John, I'd like to react to your question about the kind of family unit versus the

individual unit, and I wanted to tie it to my comments previously about the universal

applicability of some of the stuff that we're doing, and to give you an example.

In Alaska, where we and ODEP have had a series of competitively awarded

projects, our customized project, located at the one-stop, really with a very large VR

leadership role in that state, brought to the table multiple different systems, new systems, for

that one-stop.

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The TANF system in particular seemed very interested because of their

constituency. Part of the customized process, the upfront part is to go through what we call

discovery. This is alternative assessment that's very person driven, and the TANF system

was so taken with that approach in the state of Alaska that they initially did their own

randomized implementation research, using discovery of the TANF population in three sites

in Alaska. They have now taken it statewide, using it as a family wrap-around service,

because they found it so useful with the individual that they are trying to learn the needs of

the entire family.

I think we need to just look at what is it that we are doing that is going to help,

whatever the challenge is. It might not be someone with a disability or a family member

with a disability, but there are other challenges that that family or that individual brings to

the table, and that these particular approaches can really help with.

Ms. Suter: I just want to say, too, John, when Johnette and Michael Morris knew

that we had the group of programs, they were on us in terms of, “we want to meet with you--

we'll do whatever you want.” So it was that enthusiasm and that really aggressive outreach,

Johnette, on your part and Michael's part that really, really helped.

Ms. Hartnett: IRS calls every WIPA where we're going into a city and personally

asks them if in their area they are interested. So we already have a "yes, we're interested."

And then we do the next group. So, we actually have different people coming in.

Ms. Beedon: Any more questions, researchers to, researcher or policy-maker to

policy-maker?

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Mr. Wittenburg: You know, the main question that I have is just going back to

these disparate interventions attacking different parts of the system. One of the things that

really strikes me that we need and that they have in the United Kingdom is this universal

approach. We talked about, John talked about universal design, but a universal approach in

dealing with disability, and so my question -- maybe it's to the Federal agencies -- is how do

we get you all to play together, and who is best to lead such an approach? Because I think

too often we look to, for example, Social Security Administration for earlier intervention or

intervention approaches. And when you hear Sue Suter talk about all the things that we

need to worry about with the Ticket to Work -- I mean getting the ENs lined up and work

incentives, working with WIPAs, your head starts to spin with all the incentives.

So how do we get in there? It really is a question to the Federal people. How do

we get them to play together and who would be in the best position to do so?

Ms. Suter: I think -- you know, in my experience -- and I've been with Social

Security about 40 years -- in my experience, our partners -- I mean we -- believe me, most of

our partners in the Ticket program are in this room.

Or another way I can say that is a lot of people in this room are our Ticket partners,

because we know we don't have a program if we don't have partners, both in the local and

the Federal level.

So I found a Department of Labor, I found obviously our partners in Social

Security, but other Federal agencies, NIDRR, RSA, Education, to be very helpful, very

helpful, one on one.

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I think it's getting beyond just the policy issue at the moment. Like you said,

David, it's getting to the universal, to the big sort of national disability policy that all fits

together. And I think that's the challenge.

I don't have an answer for that, but in my experience our Federal partners have

been very willing to sit down and do that. It's just that the eligibility requirements, it's so

complex in terms of all the programs that we administer--the eligibility, the politics with a

small "p"--it's just hard on a national level to make that work.

In terms of the lead, actually I think the lead has to come from the top, and you

know, it has to come from an administration -- I don't care whether you call it the New

Freedom Initiative or whatever, but it has to come, I think, from the top and say, okay,

Federal agencies, you need to sit down together and develop these policies. I think there

does have to be leadership there.

Mr. Kregel: I just wanted to say that one of the slides that Johnette did not have

an opportunity to show that really struck me is when she said more information about rating

disability-specific and generic tools to advance self-sufficiency. And she cites FAS,

individual budgets, EITC, and IDAs. She's talking about the Social Security Administration

rules to individual budgets, which are frequently Medicaid-driven, EITC out of IRS, and

IDAs out of IRS as well.

So when you talk about universal systems to wrap around, the complexity of that is

very, very difficult. We're training benefits planners -- we start a course for 182 benefits

planners on Monday. It's called Other Federal Benefits. It's all these things, plus veterans

benefits, plus HUD, plus food stamps and TANF, and it gets very, very difficult.

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The other thing is these are all based upon you got to work, and so you have to

have income to take advantage of some of these self-sufficiency things.

Ms. Hartnett: And I just want to comment that we actually have research that I

didn't get to talk to you about, but it's going to be released in a couple of weeks. But we

actually followed 49 individuals with significant disabilities, and what we found at the end,

they're working, receiving benefits, 51 percent. So we're talking about HUD, which John

just talked about, people that could not -- they ended up at the end of the day, they couldn't

use their IDAs because of the HUD policy and Social Security, the CMS, -- all the different

policies, when you line them up, don't have all the same eligibility criteria, or they don't

have the same waiver authority. We had one person who was making $12,000 a year and

saved $9,000 for a down payment in five years.

She went to get her section 8 voucher so she could use that toward a mortgage

payment. And because she was living in a house with somebody, she had to go homeless in

order to then get on the waiting list at HUD in order to make it all work.

These are the stories from the ground. And you're absolutely right, David, we need

to have an overarching universal design for the policies right now, because otherwise as a

development, no matter how many relationships or partners we have, it's not going to

happen.

Mr. Sanford: Included in those policies you've got to look beyond just the

benefits. You've got to look to the structure and the infrastructure that we have, so that if the

environment isn't accessible, if people even if they have benefits can get modifications

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somehow. Even if they have a job, they have to be able to get there. And if they can't get

there, there's not any job for them. So if they can't get there, it doesn't work.

Even -- and then going back to my point about activity and participation, telework

is an option. So, okay, you stay at home, isolated, that's great. You know, you can't get to

your job, but you can work.

The biggest downside of teleworking is dissatisfaction with being excluded from

the workplace. So then we have to figure out, even if people are at home, how do we bring

them into the workplace from home. And that's another project that I didn't talk about, but

we're working towards.

Ms. Campbell: Richard gets the last word.

Ms. Beedon: And then we will come back to this panel.

Mr. Balkus: I'm looking at trying to make that finding work, to the best we can at

this particular point. It's where you try to look at the opportunities where you have some

common ground, maybe with another Federal partner in terms of addressing the problem.

I'll bring up one example because it is timely. This afternoon we have a kickoff

meeting for the Administration for Children and Family, Office of Family Assistance,

working on an SSI-TANF project. And again, the connection between our two programs is

very strong. We feel that we have a lot to gain here in terms of looking at opportunities to

get people on the right path in terms of whether they actually need disability benefits or do

they need the supports to get back to work.

I think you just have to keep on looking for those types of opportunities where you

can develop some common ground with another organization and try to move forward.

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Ms. Button: I want to go "ditto" for what Richard just said, really, because I think

that where you have leaders who want to develop common ground, that there are ways to

move forward in that area.

I'll give you one example. ODEP worked very closely with the Department of

Housing and Urban Development on a five-year project that was called CHEETA. It was

really using customized employment for people who are chronically homeless, long-term

homeless, living-under-the-bridge homeless.

With the one-stops for every one-stop person that we gave a rather sizeable amount

of dollars to for the demonstration, HUD matched the community with more than $3 million

in permanent housing funds.

So while we were working on the employment piece, we could also be working on

the housing piece. It's possible to do. Leadership is really important, and leadership is at all

levels, both inside and outside the government. And, just really important. PANEL 3: Open Discussion and Knowledge Translation Marty Ford, Moderator; Susan Daniels and Michael Morris, Discussants

Ms. Ford: The questions that have been put forward for this part of the session

are: If we were to adopt the evidence-informed policies presented in the first two parts of

this morning, what strategies are needed to put the policies into practice and what are the

opportunities and barriers.

I took a whole ton of notes this morning, like everybody else did, and noticed a lot

of interesting trends that are going through the comments.

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One thing I just wanted to point out before I turn it over to the speakers here is that

we talk about the risk of poverty, which I think was a really important point, and the term

means-tested has been used a lot this morning, and one thing that I wanted to mention,

means testing usually is associated in Social Security, the SSI program, in Title 16, but I

think that you have to also look at the role of the substantial gainful activity level in

determining ongoing disability for somebody entitled to is, essentially and practically

speaking, another means test.

So when we're talking about means testing in this sense, I think you have to look at

both the programs. But that's just one of my observations.

We're going to have two people help start us off. Most of this session is designed

to be interactive with the entire audience and the people who have already presented.

First we have Susan Daniels, who is a consultant at Daniels and Associates. Many

of you know her; from 1998 to 2000 Susan was the Deputy Commissioner for Disability and

Income Security Programs at the Social Security Administration. She received a PhD from

the University of Maryland. Then following Susan we will have Michael Morris, who is the

director of the National Disability Institute and the CEO of the Burton Blatt Institute at

Syracuse University.

Ms. Daniels: Well, thanks for asking me. I always have opinions. But I would

like to add just a few comments to this, and then talk a little bit about the movement from

policy to practice.

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First of all, after 30 years in this field, I know I look very good for 82, but I have

been 32 years in this field. It's really hard to accept that we have so few evidence-based

practices. It's just -- it's incredible.

What are called “best practices” I call good hunches made by dedicated people,

and we seem to skate along with those in our field forever without anybody calling attention

to it. So I'm kind of chagrined about that, and I think all of us in the field of disability and

rehabilitation and social insurance and whatever ought to be kind of concerned about that.

Number two, I'm going to answer David Wittenburg's question about how policy is

made. David, you're too young to know. That's my answer.

(Laughter.)

Regarding fragmentation, in the area of disability policy, at least at the Federal

level, one of the things that I learned from my friends at NASI is that the fragmentation in

policy mirrors the Congressional fragmentation in jurisdiction. So whereas we might want

to point the finger at the executive branch for this craziness that we have--a patchwork of

uncoordinated policy, I think we can bring along our colleagues on the Hill for at least

contributing their part.

And that was true, and we noticed that immensely, in dealing with the Ticket to

Work legislation. Oh my god was that difficult. Marty can tell you more about that end of

it than I can. But I'll tell you, that was really, really difficult, because everybody and their

grandmother had their hand in the piece. That's the reason some of it doesn't make any

sense.

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So any time you go from an idea to practice and you have to go through the

political process, it's never going to turn out the way you think. So, you just hold your nose

and swallow and move on and do the best you can.

I want to say two things about that, and this deals with the fragmentation issue,

David, and that is disability is not a word that's really going to be helpful here in this

discussion. I find it's getting more and more so that we talk about "disability policy" or

"disability programs." We don't know anything when we say that. We might as well just

blah blah blah and blah blah blah, because it doesn't describe anything.

Disability is getting everybody all kind of crazy, so I'm going to put again my

principle on the table: The word “disability” should refer to the political unity under the

ADA. That is the broadest possible definition of people who are protected in their civil

rights under the Americans with Disabilities Act.

After that, we have to say people with disabilities who have certain characteristics:

who are poor, or who are working, who are near poor, or who have cognitive deficits, or

people who have mental illness-- something. You have to describe what we're talking about

because past the notion of equality and political unity on this issue, the word disability for

programmatic reasons is absolutely useless. I'm really hoping that we'll start to define the

segments that we're talking about.

Because the strategies, I think, for improving the lives of people who have extreme

work deficits or who are unemployed and disabled, are not the same as the strategies for

people who are employed and disabled. The people are different, so we've got to talk about a

lot of different strategies.

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Okay, that's the first thing.

The second thing is even though I'm sitting right here next to Marty -- he's going to

bop me on the head when I say this -- I'm going to say that I don't know why anybody

would want two for one in the DI program. I never understood it when it got in the

legislation, I don't understand it now, because we have never ever had a two for one in the

SSI program. Social Security has never administered a two-for-one program anywhere,

anytime.

So why everybody likes it so much, I don't know. It boggles the mind. It's never

been tried. And yet everybody is so blown out by it and they want it, and this demo that's

finally going to give results in year, what, 2013 or something, so wowee, so what if people

like it. It doesn't make any difference. It's not administrable. It's not doable. It's not doable

unless you have monthly accounting--monthly accounting practices that are conducted by

banks, et cetera, are possible--but not a yearly or quarterly accounting system.

But Social Security currently has, if we just take the fog down a little bit and look

at what really happens, what really happens is we have a formula, Social Security has a

formula for figuring overpayments, not a two-for-one offset.

What really happens is that in almost all the work incentives, people get overpaid

and scared. That's what happens. So we don't really have any work incentives to start with.

What we have is a conglomeration of hopeful ideas that people had, and an

implementation that leads to scary situations for people with disabilities. I don't know how

else to put it. I don't know how my friends in the Work Incentive Planning and Assistance

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programs (WIPAs) do it--keep a straight face--and my good friend John Kregel over there

training them. But that's the truth. That's what really happens. And so why we continue to go down this path of pretending that we have work

incentives and that some of them are great and we want to even expand them kind of -- I'm

not there. Somebody is going to have to really take me out in the hall and give me a good

talking-to in order to convince me otherwise. Because I think all of us would say we know

things have happened.

Maybe it's because those kinds of transactions that occur in work incentives aren't

something this kind of agency can do. Maybe it's not; I don't know. Maybe if there were

billions and billions of dollars and more people to administer the program, it could be done.

But I don't think under the current circumstances it's in our lifetime.

So I would like us to start talking about "so now what." So that's true, now what?

What do we do now?

And now I'm going to get bopped in the head because my time is up. Thank you.

Ms. Ford: No, just a very simple answer. People are looking for a way to not

have that cliff, to allow their benefits to go down when their income goes up, and to go back

up when their income goes down. That's the simple answer. But I don't want to take any

more time. I'm turning it over.

Mr. Morris: Susan, this is not an intent to answer any of your questions --

Ms. Daniels: How about the one for David? Is he old enough to know about our

policies?

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Mr. Morris: We'll leave that to others to figure out. I guess what I wanted to do

was first take an optimistic view of the context in which we find ourselves in terms of

moving from policy into practice.

I would echo what Susan said, we have far too few evidence-based practices that

have found their way into policy, so I will tend to avoid that for the purposes of my remarks

and really focus on this new framework which I am very optimistic about.

I'm optimistic because of about seven different points:

Number one is that we finally are moving from a discussion around employment to

a discussion around the focused topic of this morning, which is pathways to economic

security. So the outcome for people with disabilities that we woefully haven't achieved,

which is work, stops far short of where we really need to look in terms of outcomes, which

is about economic stability, it's about economic security in terms of really looking at

advancing self-sufficiency.

Number two is moving beyond disability service delivery, as has been discussed

this morning, to a different focus on breaking down the silos across public agencies, but

even more exciting is the public-private partnerships that are now occurring.

Number three is moving beyond disability-specific policy to generic policy. And

the context we all find ourselves in today, everything is about economics, whether we

understand what a credit-backed derivative is or short selling or what's going on in the

financial markets today is what we have now is a new contest that must engage

policymakers, must engage regulators in terms of where do people with disabilities fit in.

And that's a new context that actually can be used in a positive way.

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Number four is, as has been mentioned, moving beyond social insurance and

income maintenance to a new calculation which has to look at how to make work pay, and

it's an alignment of public policy that we have yet to achieve, and it goes beyond disability-

specific policy into other areas in terms of where is the interface between tax and social

policy.

Number five, it's moving beyond research timetables to real time opportunities. If

the opportunity for change in tax policy is here today, we can't wait for seven years to find

out what will be the results of longitudinal research that is way in the future. By then we

will have changed tax and social policy six times. So we have to get into a very different

context.

Number six is moving beyond, as was mentioned, specific accommodations in

terms of Jon Sanford's presentation and also in John Kregel's presentation to looking at

universal design. But we have then a new set of issues which has to focus on where does

that fit in terms of the ADA and reasonable accommodation, what do we do in terms of

changing tax policy that actually incentivizes universal design rather than looks at people in

frustration around reasonable accommodation.

And number seven is really understanding this context we find ourselves in today

with CMS moving forward with self-directed budgets and individuals picking their own

providers to the world of work incentives and Ticket to Work Program and the new types of

partnerships outside the traditional corridors of the vocational rehabilitation program. How

do we really sustain this notion and operationalize this notion of choice and flexibility that

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goes outside our traditional context of where people with disabilities go for assistance, and

what they look to in terms of their aspirations to advance their economic self-sufficiency.

I see that as a new context and a new framework that has to impact our research,

has to impact our ability to change policy, and has to move us in terms of policy to practice.

Where are opportunities? Well, they're obviously about 21 days away, I think--the

opportunity of a new administration. Whether one thinks about mavericks or change agents,

whether one thinks about lipstick or language, whether one thinks about donkeys or

elephants, we can all ride the horse of change, and the change that we have here is change

that will focus, like this country has never looked at before, in terms of priorities in spending

money, in terms of the way our tax code creates barriers and facilitates people in terms of

asset ownership and asset accumulation.

It is an opportunity, as some candidates say, it's the most important one we will

face in our lifetime. And it is certainly that in terms of people with disabilities.

Second, we have to examine and reexamine, take this opportunity of a new

administration to reexamine performance measures and measurement.

Our individual systems, whether they are the traditional disability systems or we

look more generically at the workforce development system, Medicaid, Social Security, we

have to have a different set of measures and measurement that focuses on this notion of

advancing economic security, economic strength for all Americans, for all people in this

country, not leaving behind people with disabilities.

Third, I think, as has been mentioned several times, there's the opportunity of the

new populations. More than ever before we will be dealing for years to come with disabled

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veterans and their families, and this is an opportunity to refocus, “what does it mean,” as

Susan said, “to have a disability in this country, whether newly acquired or a disability since

birth.”

And perhaps finally we will get a context that understands that disability is a

natural part of the human experience. But what does it mean in terms of our policies that we

don't leave behind other classes and other parts of the disability population.

And then my last two points would be in terms of the point of discovery and

moving policy to practice is we are here in Washington, we tend to focus at a Federal level,

but the real innovation in movement of policy to practice most frequently takes place on the

ground, at a state level, in state capitals, and even more so on the ground in local

communities. We can't forget that context in terms of where we truly will see innovation

and where we support policy moving to practice.

And then finally, knowledge translation. My pet peeve, wherever I go and have a

Federal audience, is if we're really serious about knowledge translation, then we've got to

change the rating criteria for all of us who live and breathe on Federal grants. Knowledge

translation, knowledge dissemination, technical assistance, whatever you want to call it, is

increasingly a smaller percentage of the points out of a hundred.

Is it any wonder that as a result when we get into gatherings like this, people are

talking about, "I don't really know how to do knowledge translation."

Well, if you believe in it, then you back it up in terms of the review criteria. And

as important as the research is, one should have to be giving greater weight and value to

activities proposed in terms of knowledge translation.

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And last, related to knowledge translation, again, a point that I think we can't

dismiss, we live in a world where knowledge transfer and knowledge translation is all

around us. We live in a world of the Internet. We live in a world where social networks are

formed and reformed every day. People are communicating via podcast and text messages.

They're finding new ways to actually build alliances, build new affinities, and change

thinking and behavior. We're not doing that either in a consistent way or in a very powerful

way to really translate policy to practice to benefit people with disabilities. Thank you.

Ms. Ford: Thank you to both Susan and to Michael. They were very good

challenging comments.

(Applause.)

So now it's time to open this up to everybody -- people who have already had a

chance to speak, folks in the audience who want to ask questions or comment or challenge

any of the folks here.

Ms. Kornblau: My name is Barbara Kornblau, I am with Special Olympics. And

I have a concern when we speak about universal design and we're talking about sensory, that

it not be limited to auditory and visual people, meaning people who can see. Because

people with intellectual disabilities and people with head trauma, post-traumatic stress

disorder, and especially people on the autism spectrum, also experience sensory issues. It

might be the fact that the air conditioning just came on just now and that might throw them

off on their work, or a light buzzing, or they need to be in a quiet environment.

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I think that in looking forward and having to serve these new populations that

really haven't been served, that we need to consider that. I also want to express my concern

that individuals with intellectual disabilities are really underserved by VR, and that's a

concern because many of them are able to work in competitive employment, they just need

the same kind of supports that everybody else in the disability community has.

Mr. Sanford: Can I just respond to that? I'd just like to say that the concept of

universal design is for -- is about everybody. So when you talk about not excluding a

disability or a functional limitation, it takes it back to disability. Universal design shouldn't

be about disability. It shouldn't be about don't forget about, you know, little Johnny, who

has such-and-such functional limitation, because it's about everybody. It's about people who

have no function, people who have full function, in all of the range of skills and abilities that

we have.

Ms. Kornblau: Well, I agree. Just when you put up sensory, you have auditory

and visual.

Mr. Sanford: I understand. And the last slide I had, it had people with cognitive.

It was the sample that we had.

Ms. Korblau: The definition of sensory is what I-

Mr. Sanford: And what I'm saying is that particular slide did not include that

sample in that study. But we did include them, and that study actually wasn't about

universal design, it was about workplace accommodations and assisted technology.

What we were trying to do was learn about assisted technology and

accommodations to be able to inform universal design. But when we talk universal design,

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we talk everybody. We don't exclude. Although because we're funded by the National

Institute on Disability and Rehabilitation Research, we have to focus universal design and

talk about it in terms of disability, even though it applies to everyone.

Ms. Ford: Thank you. I actually have a little bit of a follow-up on the universal

design. Does the notion of universal design leave room for making the individual

accommodations above and beyond that for people who need it?

I believe that universal design can bring everybody up to a certain level, but there

are some people who are going to need a bit extra in a different way that wouldn't be shared

by other people in that particular context. So that's one of the questions that came up to me

when I was hearing the discussion.

Mr.Sanford: Yes.

Ms. Ford: The answer was yes.

(Laughter.)

Ms. Ford: Who else? Other questions, comments?

Mr. Jensen: I am Allen Jensen from George Washington University, but it turns

out that I'm also running something called Medicaid Infrastructure Grant here in the District

of Columbia, which is a new task. I started local in 1966 and now I'm local in DC in 2008.

What I was struck by here was the argument, in effect, between Susan and

Michael-- both friends. You did not agree on a lot of things in your comments, and I guess I

agree more with Susan that disability is not a helpful term because you can't deal with

mental illness the same way as with someone in a wheelchair, as we talked about here. And

the one-to-two issue, it's very difficult to administer, and they're planning that in the pilot

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project we have going on in the states right now. Trying to administer it in the states is a big

issue.

Now I think it is being done in the SSI programs with the help of friends, shall we

say, to make it work. But I understand it -- leads to scary stuff, shall we say.

And so I think the moving to generic, one of the things that the customized

employment, you know, tried to get that one-stop to deal with the disability population, I

don't know you say that actually worked or not. I tried to evaluate one of those, and they

just couldn't get that one-stop to do it, and I'm not sure that's even realistic when you go that

way.

So here again, I think we have to deal with the individual as compared to generic. I

just don't see the idea of trying to make the generic system serve this very diverse population

of people with disabilities. And once we decide that's really not the way we need to go and

beat our head against that wall, I think -- and that's both on the disability but also on the

specific disability that Susan talked about.

There's a lot of different -- I'm involved right now in evaluating; now five years

into it, the Medicaid Buy-In Program in Indiana, and the thing which I tell the data people,

who are pulling the stuff out, do not mix disabilities, don't even mix years, because there are

policy changes, as you talked about during those times. They changed the way Part B

Medicare came in. It all changed things.

So, anyway, that's not a coherent thing, but I think that there is real differences

between what Susan said and Michael said on the two things.

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Ms. Reno: I would just like to inject before passing the mic on. From Nancy's

perspective, I do want to remind you to be thinking about filling out your evaluations, but in

particular -- in particular -- it asks on the back what topics would you like to pick up on for

future seminars. And that's been going through my head as I listened to this conversation.

You know, where should we go next with this? That would be very helpful to us.

Ms. Button: Thank you. I want to respond to Allen's comment and elaborate a

little bit.

Having spent most of my professional life out in the real world and not, as a friend

of mine says, in the belly of the beast, where I currently reside, the customized initiative was

never intended that the one-stop should solely in and of itself serve people with disabilities.

That was not the intent. So if you're not finding that, it doesn't surprise me.

The intent was that the one-stop would have a door that is open to everyone, and

through partnerships, through new partnerships with generic and disability-specific systems,

we would be able to bring to the table resources, funding possibilities, things to leverage that

were never before there. So that it's not just the responsibility of the VR or just the

responsibility of any one system to provide the supports and the services that a particular

individual needs.

We had, as at the beginning of any demo, dismal failures, and we had a handful of

absolutely spectacular successes with a one-stop as a hub leveraging the community and the

state and the Federal resources.

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I want to comment on something that Michael said about not being able to wait

how many years for the next round of research to come forward before we could make some

of the policy changes that we need.

I would ask us to reflect back on the supported employment policy. Nobody

questions how successful supported employment has been.

I was on the Hill with former Senator Weicker when it passed, the amendments to

the 1986 Rehab Act, and before that, added as a line item, when there were a handful of

state demos around the country that RFA funded, a handful of state demos, added as a line

item with no corresponding line in the actual authorizing statute, and it kind of snuck by and

nobody saw it.

So sometimes you don't wait. And there was a lot of opposition to the '86

amendments by the VR community, look what's happened over the years. And it was

because, to use Susan's words, some people had some good hunches based on a handful of

evidence, as opposed to the big body of evidence.

I don't know where the line is that you draw, but I know that it's hard to think about

waiting another 10 years before something else comes down the pike.

Thanks.

Ms. Ford: I'm going to take an opportunity to add a little bit to the thread that

Allen and Chris started, and raise a question about evidence-based practices to start with.

Because I come out of the field dealing with people with intellectual disabilities,

severe cognitive impairment, I know that there are so many people who have very

significant or profound multiple disabilities, including cognitive limitations, for whom their

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family, their circumstances, their individual strengths, their individual limits and fears and

capacities, make it, I think, very difficult to imagine evidence-based, research that goes

across the board able to focus in on what is really necessary for that individual. I'd be happy

to be proved otherwise, but I suspect that sort of like in medicine with the word "most,"

most people react this way to this medication, why are you reacting differently?

The "most" does not mean all, and we have to be careful not to reach a point where

if it's not evidence based, it won't be paid for. So much of what happens for the population

that I'm concerned about really is very individualized and tailored. I want to throw that onto

the table in this whole discussion.

Michael had a comment, and I saw one over there, and I think there's another one

over there.

Mr. Morris: I guess in reaction to Allen, first, Susan and I agree on more things

than you could quite imagine, in fact, probably about 99 percent of things.

I think one needs to be careful about oversimplifying a conceptual framework that

incorporates generic as well as disability-specific policy as well as practices.

If we ignore the generic systems, it's like basically you're ignoring 90 percent of

the way the Federal government allocates resources. If you ignore the generic system,

you're basically allowing people to live by fear and frustration and disappointment, whether

it's the workforce development system, whether it's a postsecondary institution of higher

education, whether it's the structure of any one of our systems that ought to serve all people,

all job seekers, or all people in lifelong learning.

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Our real challenge -- and perhaps what is most unbelievable is for every step

forward we've come in terms of a better understanding of the importance of people with

disabilities being included in generic systems and whatever their supports or services are, we

are still miles away from where it should be.

But to abandon that approach is to basically say that people with disabilities are

more different, are more in need of their own programs, and it's the opposite of what we've

learned in the Real Economic Impact Tour and working with the IRS and financial

institutions, public and private agencies.

We actually have shown that people are willing to come together, people are

willing to realize that attitudinal change can take place, behavioral change can take place,

and we need to do more, as I think John Kregel started us this morning, in understanding

from a research perspective more about how you form public-private partnerships, how you

break through the silos of different public agencies, at all levels of government, Federal,

state, and local.

But one quick other thing is I think -- and really maybe the challenge to NASI --

the most fundamental change is taking place in our government today in redefining the lines

in terms of responsibility and role, in terms of our economic system. It really challenges us

to also think about the social contract that government has historically had that in fact for

you to receive public assistance; you fundamentally have to stay poor.

The question today becomes: What is the role of government in terms of helping

not just the rich get more wealthy, hold on to assets and grow assets, but what is the role of

government in helping reach to the bottom of the economic ladder and really provide that

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hand support, that flexible support that enables an individual with or without disabilities at

the lower end of the economic spectrum to be able to come up out of poverty.

There has never been a more fundamental change going on in government in my

life than what's going on right now, and this kind of question has to also be taken on in terms

of people at the lower end. It's not being asked on the campaign trail, it's not being asked by

the questioners, and yet this is a fundamental a time to take on this challenge.

Mr. Balkus: I just wanted to follow up on a point or two, and this is one time

where I think I agree with Marty Ford more than I do with Susan Daniels.

(Laughter.)

First, I think Marty's observation in terms of Substantial Gainful Activity is very

appropriate. It is a means test, and for a lot of individuals, that's what they'll work to.

I recently came back from visiting one of our mental health treatment sites during

one of their fidelity reviews that we do to make sure that they are following the protocols.

Part of the day I was able to sit down with a number of our enrollees, and the only rule that

they knew was, “I can't work over $940 a month or I'm going to lose my benefit.”

These are DI workers. I'm not talking about the SSI population. I'm talking about

people who have more.

Getting back to the four-state pilot, yes, we do have a four-state pilot with a benefit

offset action, where we're testing the one-for-two offset. That pilot was designed for us to

learn -- learn what we needed for a national demonstration, and we have learned a lot.

That's why we're proceeding with automation to the fullest extent possible here, to make

sure that we pay people correctly, and no, we're not doing monthly accounting for the

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benefit offset demonstration. We are doing an annualized earnings test for the benefit offset

national demonstrations. So we get out of the business of having to do any type of dollar-

for-dollar accounting per month.

We're doing it in a way that we want it to work. We want it to make a difference in

terms of providing a real work incentive for people to take advantage of, to go above that

$940 a month, and to get them out of poverty or near poverty.

Ms. Beedon: Do you mind introducing yourself?

Mr. Halliday: Oh, I'm John Halliday with the Institute of Community Inclusion in

Boston. A couple or two points. One is about how we do things, which I think is a bit of

this debate here. Recently I received the interesting book I'll call "Nudge" a couple of guys

from Yale wrote. One thing we don't do well in government is looking at the way we

implement policies. It's a decision basically how you implement policy. For example, a

401(k), it's the simple study of you can opt in if you wish--a low percentage opt in. In

contrast, you are automatically in but you can opt out-- and in a higher percentage are in—

they don’t opt out. Same way what we're talking about here in terms of how we track

earnings, how we do anything else.

We tend to do it more in a protective control, in a debate of policy of limiting risk,

to this side of the table, the government side, and not making it easier to participate. I guess

that would be one.

The second, it boggles my mind why we don't have a policy at the national level

that basically says if we're all in work incentives -- and I can't think of a Federal program

that doesn't talk about incentivizing someone to work, whether it's Medicaid, whether it's

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HUD, whether it's Social Security, and so forth -- why there isn't a larger operating policy

that says "and when we find out that your policy doesn't do that, you can change it."

Because it's about work, rather than having to, you know, try and over regulate.

I mean I think classic state agency problem is with regulation -- that we over

regulate. We should really be minimalists in terms of - in intent rather than in the other

piece.

One other thing that I would say in our research that I find interesting when we talk

about going to work and returning to work and helping people out is we learn very much at

the individual level on what works, and a lot of this is talking about the individual, yet on

the institutional level we've been, particularly in the last 15 to 20 years, driving ourselves in

the opposite direction, and I'll give you two -- three classic examples.

TANF and SSI. The TANF Program is set up, the data were there in Social

Security -- in fact, I worked in a state where legal aid societies appealed the turndowns, to

get everybody I can off TANF onto SSI, and then I stop, because under welfare reform I

don't have to talk to them about going to work.

Now there's some benefit to the recipient to doing that, I agree. But here's a classic

example of a policy that's driving in the other direction.

The Medicaid funding of community-based services, particularly in the intellectual

disability in the DB system is doing the same thing. The research that I see, I've done, and

others have shown that the amount of Federal funding has gone up within the last 15 years,

and correspondingly what has gone up? It's not work services. It's nonwork services.

That's what's gone up.

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So we have systems that we know at the Federal level. I agree with Michael, you

decentralize everything to state control in most programs now. The best the Federal

government can do is set sort of a tone and assist in a larger context and give those states

some sense of direction. Because, in reality, that's what's going on.

My last comment would be before coming here, I was talking with states, talking

about what's going on at the grassroots level, about a director who was talking about 38

percent of his counseling positions being vacant and that they have been vacant and will

continue to be vacant. Ninety percent of his support staff positions are vacant.

This is going on across the country. So to have a discussion about a system

responding has to be put in that context – any state agency at this point is probably in

discussions not looking for evidence-based research, their discussion is looking at survival

in that context.

Ms. Hartnett: I just want to make two comments, and the first one is on the

evidence-based practice, and I think that, you know, from the work that we're doing right

now in the asset development, certainly there haven't been the resources to even think about

developing real long-term evidence-based practices. I can't even get resources to give to my

city.

So it's sort of what comes first, but more importantly is that there are on the Federal

level -- HSS, and I don't know if John is still there, the gentleman whose work involved the

poor finance series, but that is the work that Michael Sherraden has just published in a

number of papers, and they looked a few years ago at 18 data sets, and then they narrowed it

down to three data sets that are very specific. One is from University of Michigan, the

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Survey of Consumer Finances, which is from the Federal Reserve, and then the SIPP data,

two of those don't even ask the SSI question. They don't ask anything on disability.

So, you know, even if we don't have a lot of resources, we can at least join some of

these big data sets to help us understand our population, which is what everybody does.

But we don't have that advantage because we don't have the IDA, and I know a

couple of years ago Michael and I did some research for NCD on long-term services and

supports for the under-65 population, and OMB is actually giving us—saying-- this is what

we need to do, and they have no data on people with disabilities under 65 and what the real

issues are for them in terms of services and support. So how can you do policy if we're not

even funding and designing the data set so that it's there?

And I think just a second remark. It's sort of the philosophers always said that we

notice differences more than we do likes. There's just something about disability that is just

so very true.

But I know from our work right now, when I go to Detroit, Michigan and I hear

that they have 1800 calls and they couldn't answer 500 on the free tax line because they have

so many people with developmental disabilities and intellectual disabilities coming to the

free tax site and bringing their case managers. You know what? That's huge. That's like --

that's the beginning of what we want to see.

And so what are they doing? They're calling us and saying we don't know how to

do this, we need help, and that's why we're all working together. That's the future, because

we can't afford to have our own tax sites just for disability. It's got to begin there.

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Ms. Picerno: My name is Sue Picerno. I'm from the Office of Disability

Employment Policy, and I was very intrigued by John Kregel's comments about the worth of

having a retention person on site at businesses to help people remain at work or return to

work.

One question I had, though, was Project Search was held in a major business in a

huge hospital, and I'm wondering if you have a model for a small employer? Is there a way

it can translate to that?

Thank you.

Mr. Kregel: One of the programs that I would refer you to is the Vermont

Medicaid infrastructure grant that is working in a community, so you do have a community-

wide base. It had this retention specialist, with the three largest employers in a particular

community. That may be county government, it may be the hospital, and it may be one

manufacturing plant, but there are ways of doing this.

We're working with Chesterfield County right now in the southern suburbs of

Richmond in what they call the government complex. It's not one physical location; it's a

research park area, where folks are implementing the Project Search model that way.

What struck me was one of the questions was, “what did I learn today from the

other presenters.” And that really changed the way that I perceived things. And there were

a couple things that were said that were really intriguing to me because I believe talking

about what we can do to promote retention and using generic strategies, and one of the

things that John said was to talk about this difference between performing duties,

performing tasks, and participating in the workplace, being integrated into the workplace.

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In my mind, integration into the workplace is the same as a predictor of retention in

the workplace, what I might call engagement or we just use a different paradigm, but we're

really talking about the same thing.

Then when Richard talked about the mental health treatment study, it was very,

very interesting to me. He said he's using the evidence-based practice. He is using the

Dartmouth supportive employment model, but the interesting thing to me was these folks

needed hand-holding, and that's one of the things that they talk about constantly in their

model.

John and I could talk about hand-holding as a support. Is it an

accommodation, or is it a customization of someone's particular job. There are different

models that have a lot of commonality, but we talk about from different paradigms.

The notion of what can we do as we try wraparound services, we can also

do in the area of how you support people at the beginning of employment or throughout the

duration of their employment. There was a commonality of responses here, and I thought it

was very interesting to bring together these multiple perspectives like this.

Mr. Wittenburg: I want to talk about good hunches and policy, because even

though I'm young --

(Laughter.)

-- or at least I hope I am; my kids don't say that I am. But it feels like our disability

policy has been made on good hunches, and particularly if you look at the VR system. We

have numerous approaches there that people fervently believe in, and they believe in it

because they provide them, they have their own incentives for providing them. So I want to

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be careful -- I think we should be very careful when we say we've got a good hunch and we

should make that a policy.

I'll use another case study here. Susan, you talked about the quagmire of the Ticket

to Work legislation, and the question that I would have for the group is the Ticket to Work

legislation was a really interesting idea. As a matter of fact, it came out of a NASI

document that I think Virginia held up earlier today.

But it changed, and it was really rushed into the field. I mean even though it

changed so much, we wanted to make it a national demonstration or a national program.

And the question that I have is would we have done some things differently if we started

small and then went bigger? And would we have saved money, and would we have done

things more efficiently?

I fully agree that we need to make fundamental changes to the system, but we need

to be smart in how those changes come about. Look at examples of how systems have

changed, it's not a perfect example, but look at the welfare reform experience. Also, a lot of

state demonstration projects, lots of things at the local level. Deb and I were talking about

some of the things that the Centers for Independent Living were doing prior to this session,

and I think having those sorts of demonstrations, those small-scale projects, getting evidence

base, really starts to build the framework for much better policy.

The second part of my comment is I'm going to sort of agree and disagree with you

on BOND, Susan. I think it's because I like the name.

Mr. Balkus: We're going to change it, by the way.

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Mr. Wittenburg: The one part that I think we should be careful of is when we

look at some of these demonstrations, I think we say is it a policy? Is this a policy that we

can implement? I think we have to be careful to holding all the demonstrations exactly to

the letter of the law. Is it a policy that we can implement?

I know GAO does this, and I know they rank SSA demos for this, but I think there

are a number of interesting ideas that we could test. I'm not going to name the person, but

somebody said this at an APPAM conference and here today, about the ultimate incentive,

where we just say, you know what? Let's wipe out all the SSA work disincentives, use it as

a treatment test.

Okay, what is the effect of having no work disincentives on the behavior of SSI

and SSDI recipients? What is the behavior of having the ultimate incentive plus

employment supports, customized employment supports for employment, types of things --

many of the things we're testing in the current demos. And what is the effect of those

policies?

I bring that up because that's not a generalizable policy, but it's a policy that tells us

something about what the work capacity is of current beneficiaries, and it tells us something

about the direction that we should go in for the program. And again, this wasn't an idea that

I first brought up.

Ms. Daniels: Can I have the last word?

Well, yes, I was there for that presentation, and I think that is a brilliant idea, and

one that should be adopted, and let me find out the answer to that question.

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In the demo, you choose a segment or group of people on Social Security disability

insurance and/or SSI and you say no matter what you do, you'll continue to receive your

benefits for your lifetime, whatever work earnings, whatever you do, and then see what

happens to them.

I think that's great. First of all, it's simple, and second of all, we would learn

something about the elasticity of this population.

Anyway, that will hardly ever happen, but that's okay. So that's one thing.

The other thing is that there was a lot preceding Ticket to Work. In fact, the entire

set of SPI projects, state partnership initiatives, and some of the ideas about the venture

planning came out of those SPIs. So I think there were items preceding the actual Ticket to

Work legislation. Demonstrations in the field, letting people try out new ideas, to see which

ones had merit. And I like that kind of field research, letting, you know, those people with

good hunches and real commitment figure out what they can do, and then see if it can be

replicated.

And then on the last thing, I'm dying to hear Richard explain this yearly thing. So,

Richard, when this is over, would you explain to me this yearly thing?

(Laughter.)

Ms.Reno: Okay. Well, I would just like to conclude by first of all thanking

everyone for being here, and please join me in thanking each other for being here.

(Applause.)

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Just a few wrap-up things. First, again, a reminder about the evaluation, and please

do suggest where you think this conversation should go next, because NASI really does

benefit from that.

In addition, we have some publications here that various people have brought, and

you are welcome to take them away, one from Johnette about the National Disability

Institute Real Economic Impact Tour, Health Benefits for the Uninsured, a few remaining

copies of a NASI report on Social Security, a Mathematica report from David, and a few of

our workers compensation reports. So they are here for the taking. It means we don't have

to carry them away.

We look forward to seeing you at what we hope will be our next National

Academy Social Insurance Forum on Disability Policy, where we hope to again collaborate

with Federal agencies and facilitate the interaction of Federal agencies. I think this has been

very energizing, for me and for many of us here.

So thank you.

(Applause.)

Whereupon, the meeting was concluded.

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