[Senate Hearing 112-868]
[From the U.S. Government Publishing Office]
S. Hrg. 112-868
ROUNDTABLE: THE FUTURE OF EMPLOYMENT FOR PEOPLE WITH THE MOST
SIGNIFICANT DISABILITIES
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HEARING
OF THE
COMMITTEE ON HEALTH, EDUCATION,
LABOR, AND PENSIONS
UNITED STATES SENATE
ONE HUNDRED TWELFTH CONGRESS
FIRST SESSION
ON
EXAMINING THE FUTURE OF EMPLOYMENT FOR PEOPLE WITH THE MOST SIGNIFICANT
DISABILITIES
__________
SEPTEMBER 15, 2011
__________
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COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS
TOM HARKIN, Iowa, Chairman
BARBARA A. MIKULSKI, Maryland MICHAEL B. ENZI, Wyoming
JEFF BINGAMAN, New Mexico LAMAR ALEXANDER, Tennessee
PATTY MURRAY, Washington RICHARD BURR, North Carolina
BERNARD SANDERS (I), Vermont JOHNNY ISAKSON, Georgia
ROBERT P. CASEY, JR., Pennsylvania RAND PAUL, Kentucky
KAY R. HAGAN, North Carolina ORRIN G. HATCH, Utah
JEFF MERKLEY, Oregon JOHN McCAIN, Arizona
AL FRANKEN, Minnesota PAT ROBERTS, Kansas
MICHAEL F. BENNET, Colorado LISA MURKOWSKI, Alaska
SHELDON WHITEHOUSE, Rhode Island MARK KIRK, Illinois
RICHARD BLUMENTHAL, Connecticut
Daniel E. Smith, Staff Director
Pamela Smith, Deputy Staff Director
Frank Macchiarola, Republican Staff Director and Chief Counsel
(ii)
C O N T E N T S
__________
STATEMENTS
THURSDAY, SEPTEMBER 15, 2011
Page
Committee Members
Harkin, Hon. Tom, Chairman, Committee on Health, Education,
Labor, and Pensions, opening statement......................... 1
Mikulski, Hon. Barbara A., a U.S. Senator from the State of
Maryland....................................................... 11
Merkley, Hon. Jeff, a U.S. Senator from the State of Oregon...... 21
Franken, Hon. Al, a U.S. Senator from the State of Minnesota..... 26
Witnesses
Julie Petty, Past President, Self-Advocates Becomimg Empowered,
Fayetteville, AR............................................... 5
Deb Pumphrey, Parent Advocate, Ottumwa, IA....................... 6
Ruby Moore, Executive Director, Georgia Advocacy Office, Decatur,
GA............................................................. 7
Katy Beh Neas, Senior Vice President, Government Relations,
Easter Seals, Office of Public Affairs, Washington, DC......... 10
Michael Pearson, President and Majority Shareholder of Union
Packing, LLC, Yeadon, PA....................................... 13
Fred Schroeder, Ph.D., Former Commissioner of the Rehabilitation
Services Administration, Department of Education, Interwork
Institute, San Diego State University, San Diego, CA........... 15
Jonathan Young, Ph.D., Chair, National Council on Disability,
Washington, DC................................................. 16
Janet Samuelson, President and CEO, ServiceSource, Alexandria, VA 19
ADDITIONAL MATERIAL
Statements, articles, publications, letters, etc.:
Advancing Employment Connecting People (APSE)................ 35
National Disability Rights Network (NDRN).................... 36
National Industries for the Severely Handicapped (NISH)...... 37
ServiceSource................................................ 38
Laura Walling, Director, Advocacy and Legislative Affairs,
Goodwill Industries International.......................... 42
Letters:
To Senator Harkin from Deb Pumphrey...................... 43
To Senator Harkin and Senator Enzi from the Consortium of
Citizens with Disabilities Employment and Training Task
Force.................................................. 44
(iii)
THE FUTURE OF EMPLOYMENT FOR PEOPLE WITH THE MOST SIGNIFICANT
DISABILITIES
----------
THURSDAY, SEPTEMBER 15, 2011
U.S. Senate,
Committee on Health, Education, Labor, and Pensions,
Washington, DC.
The committee met, pursuant to notice, at 10:04 a.m. in
Room 106, Dirksen Senate Office Building, Hon. Tom Harkin,
chairman of the committee, presiding.
Present: Senators Harkin, Mikulski, Merkley, and Franken.
Opening Statement of Senator Harkin
The Chairman. The Senate Committee on Health, Education,
Labor, and Pensions will come to order. Last week, President
Obama made an impassioned plea for the Congress to focus our
attention on the jobs crisis in America. On Tuesday, the Census
Bureau reported that nearly one in six Americans were living in
poverty, with the number increasing each year for the last 4
years. Even more depressing is that about one in four children
in America are now living in poverty. I might remind people
that the poverty level for a family of four, two adults and two
children, is about $22,000 a year. That's about $425 a month.
The number of Americans in severe poverty is also going up,
and that is those living at or less than half of the poverty
rate. That means a family of four making $11,000 a year or
less. That's how bad things are.
Unemployment is stubbornly holding over 9 percent. I think
the President is correct that we've got to move ahead on a jobs
bill. But today we'll focus the HELP Committee's attention on
an often overlooked piece of the employment problem, or
unemployment problem, and that's the shockingly low labor force
participation of workers with disabilities.
According to the Bureau of Labor Statistics, as of August
there were more than 15 million adults with disabilities in the
United States between the ages of 16 and 64, working age. Of
this group, less than one-third were participating in the labor
force; over two-thirds not working. So you say, ``OK, the
unemployment rate in America is 9 percent, but the unemployment
rate for people with significant disabilities is about 60
percent, 60 to 66 percent.''
In the last 3 years, statistics show us that people with
disabilities have been leaving the labor force at a rate of
more than 10 times the rate of the nondisabled population. In
other words, as people have been laid off and jobs decreasing,
those with disabilities are being let go at a rate 10 times
that of the nondisabled population.
This is unacceptable. I might even go so far as to say I
think this is gross discrimination. We need to take action to
change this trend.
This roundtable today is meant to look ahead. I am an
optimist at heart. I do believe that we will be coming out of
the recession, that we will increase employment. The gears will
start to work, sooner, I hope, rather than later. I just want
to make sure that as employment starts to go up, that if the
people with disabilities have been leaving the labor force at
10 times the rate of the nondisabled, they should be rehired at
10 times the rate of people without disabilities.
I want to look ahead and think about how we set up systems
and do things that really get people with disabilities employed
in gainful employment. For today's roundtable I want to focus
on an important element of the disability community, people who
have significant disabilities and who often experience multiple
barriers to employment.
In March, we held a HELP Committee hearing focused on
people with intellectual disabilities, and some of the biggest
barriers to success in the labor market for people with
significant disabilities are what? Low expectations,
discriminatory attitudes, lack of early life preparation for
gainful employment, and I think just, quite frankly, a failure
of imagination on how we can construct systems for gainful
employment for people with significant disabilities.
The purpose today is to hear from a diverse group of
experts about how they would improve our education, our
workforce development, our human service programs, so that
people with the most significant disabilities who want to work
are able to find a place in the labor market and have a career
that works for them.
It's often said that it's not enough just to give someone a
job that's a dead-end street. There's got to be some hope for
improvement and advancement as life progresses.
I'm working with Ranking Member Enzi and other members of
the committee to use this roundtable and other hearings to
inform a multiyear disability employment initiative. My goal is
to make the policy changes necessary, engage with leaders in
the business and disability community so that the size of the
disability workforce will grow from 4.9 million to 6 million by
2015. We sort of set that goal, but that's not just mine. The
U.S. Chamber of Commerce has also set that goal.
I want to make sure that we don't leave behind a community
of people with significant disabilities and that they have to
be brought along as part of that increase. As we approach
today's topic, I want to keep in mind the diversity of needs
and experiences in the disability community. For purposes of
today's discussion, I'm focused on people with the most
significant disabilities because they don't always benefit from
traditional disability employment strategies. For example, some
sources have estimated that the labor force participation rate
for people with intellectual disabilities is below 25 percent;
for people with severe and persistent mental illness, below 10
percent.
Moreover, I believe that policies that work for people with
the most significant disabilities--let me repeat that--polices
that work for people with the most significant disabilities,
things like workplace flexibility, assistance with starting,
early involvement in secondary school, sustaining micro-
enterprises, tailoring the elements of a job to the capacities
and interests of the worker, when you look at all those, those
also benefit workers with less severe disabilities, or even
people without disabilities, sort of like universal design.
Universal design helps everybody.
In addition, people with the most significant disabilities
have the highest participation rates in our most expensive
safety net programs--Medicare, Medicaid, Social Security
Disability Insurance, SSI--which means if we're successful in
helping this population achieve some economic self-sufficiency,
then we have some savings on the government side.
Senators Murray, Enzi, Isakson and I have been working on a
bipartisan reauthorization of what we call WIA, the Workforce
Investment Act, and we've sought to make changes in the
Vocational Rehabilitation title of that bill to strengthen VR's
emphasis on competitive, integrated employment, and prioritize
services for young people with disabilities as they enter the
workforce for the first time.
Today's roundtable hopefully will inform our ongoing
efforts to reauthorize the Workforce Investment Act, to spur
new thinking that can inform other legislative efforts like the
President's jobs bill, and other bills.
Let me introduce our panel and we'll kick it off.
Ruby Moore is the executive director of the Georgia
Advocacy Office, which is the P&A, protection and advocacy
agency for people with disabilities in Georgia. Ms. Moore has
worked for 35 years advocating for and running competitive,
integrated employment programs for people with significant
disabilities. Thank you for being here.
Next we have Katy Beh Neas, vice president for Government
Relations for Easter Seals. Katy is a disability policy expert
representing a national network of Easter Seals affiliates that
operate a wide range of employment programs for people with
significant disabilities. I might add that in her earlier life
she was a member of our staff on this committee.
Michael Pearson is the president and majority shareholder
of Union Packing, LLC in Yeadon, PA. Mr. Pearson brings a
perspective of a successful small business owner who has made a
real effort to hire a diverse workforce, including people with
disabilities. Thank you for being here.
Next we have Julie Petty of Fayetteville, AR, a national
leader in the self-advocate movement. She is past president of
the Self Advocates Becoming Empowered, a national membership
organization that brings the first- person perspective of
individuals with significant disabilities to public policy
discussions. Julie currently works at Partners for Inclusive
Communities, the Arkansas University Center of Excellence in
Developmental Disabilities. Thank you for being here.
And Deb Pumphrey of Ottumwa, IA is the parent of a 27-year-
old with multiple and complex disabilities. Deb is a parent-
leader and advocate in Iowa who has worked hard to find
employment that works for her son. She currently chairs the
board of Tenco Industries, which operates a community-based
recycling program that employs her son and other people with
significant disabilities in the Ottumwa area. Thank you for
being here.
Next we have Janet Samuelson, the executive director of
ServiceSource, an agency that serves people with disabilities
in nine states and the District of Columbia. Ms. Samuelson
brings over 35 years of experience in the disability field and
leads a nonprofit that provides employment and day treatment,
training and support services to over 19,000 individuals. Thank
you for being here.
And Fred Schroeder. Fred is not here yet. He's en route.
Well, I'll introduce him even though he's en route. Dr. Fred
Schroeder is an expert in vocational rehabilitation, having
served as the Commissioner of the Rehabilitation Services
Administration under former President Clinton. Dr. Schroeder
took steps during his tenure at RSA to make clear that the goal
of the public vocational rehab program is competitive,
integrated employment, and to hold rehabilitation counselors
accountable for achieving that goal.
And, last but not least, we have Dr. Jonathan Young, who
currently serves as chair of the National Council on
Disability, an independent Federal agency advising Congress and
the President on public policy. Dr. Young brings a perspective
of an attorney and historian who has chronicled the history of
the disability rights movement and has advocated for policies
that advance the goals of the Americans with Disabilities Act,
equality of opportunity, full participation, independent
living, and economic self-sufficiency. Thank you for being
here, Jonathan.
Thank you all for being here. I'd like to now begin what I
hope will be an open, free flowing discussion on this issue.
I'd like to lay out two topics to organize our conversation.
First, what is the right spectrum of employment options
that will address the needs of workers with the most
significant disabilities?
Second, what are the best proven strategies for workers
with the most significant disabilities to increase their
earnings over time and achieve career advancement?
To help frame the conversation, I want to offer a working
definition, I hope, and I can be corrected or this can be
amended by anyone here. But what is a working definition of
``the most significant disabilities'' in the context of
employment? For purposes of today's discussion, I would suggest
that people with the most significant disabilities are people
for whom competitive employment has not traditionally occurred,
has been interrupted, or is intermittent because of the
disability; or who, because of the severity of the disability,
need intensive or extended support services to work
competitively. Now, if you have other views on that and other
things to add, maybe I didn't cover it all.
We have our introductions. I laid out the two sort of broad
areas that I would like to discuss, and I'd just reiterate one
of them. What's the right spectrum of employment options that
will address the needs of workers with the most significant
disabilities?
I will open questioning with Julie Petty. Before we talk
about the spectrum of employment options, Ms. Petty, what goal
should we have regarding employment for people with
disabilities, especially those with the most significant
disabilities? What goals should we have? From your perspective
as someone who has a disability, who advocates, what is it that
we should be striving for? That's a sort of general, open-ended
question.
STATEMENT OF JULIE PETTY, PAST PRESIDENT, SELF-ADVOCATES
BECOMIMG EMPOWERED, FAYETTEVILLE, AR
Ms. Petty. Thank you for having me today. I think you
talked a little bit about it earlier when you talked about the
discrimination. First we have to change attitudes about people
with intellectual and developmental disabilities. We have to
think that everyone can work. Now, that might not be the same
for all people with disabilities, but everyone can work.
We have sheltered workshops all over the Nation. I know a
lot of my friends work there, and they've been there for many,
many years because people don't believe in them. People don't
think they can do much, but they've never been given the
opportunity, and I really do believe it's an attitude change.
If the attitude changes, then the service system for the
employers and even from ourselves, we have to believe in
ourselves. We know that the sheltered workshop model is an
outdated model and that things can be done differently.
Everyone can work means that people have individual employment
plans.
I would like to share with you a story about a woman in
Oregon who was in a sheltered workshop, and she has severe,
significant disabilities. She uses a wheelchair, and all she
did all day is bang her fist on the table and yell. Well,
somebody got a clue and decided this might not be the best
place for her. So they found a factory in Oregon and they
created a customized button that she could hit that would run
the machine, and she could yell all she wanted because nobody
else could hear her. That is one place that we need to think
outside the box.
The Chairman. That's why I kind of referred to it as having
imagination.
Ms. Petty. Yes, sir. And I would also like to share with
you another reason why we should strive for employment for
people and that is because of quality of life. If you have a
real job, you've got real money. I have friends with
significant disabilities who don't get to go to the movies, who
don't get to go many places. And then you have the service
providers who work for these organizations who go off to the
Caribbean or wherever they want to go. So the quality of life
overall is healthy. It's healthier for people to have a job.
I've been in many sheltered workshops all over the Nation,
and people aren't smiling, people aren't happy. One of my
friends in Arkansas, his sister got mad because he got food out
of the snack machine all the time. Well, he doesn't have a lot
to do during the day, so he goes to the snack machine.
When we have a real job and we have employment that is
integrated--we also can develop relationships. I have a lot of
friends with disabilities, but I have a lot of friends without
disabilities too, and I met them through work and through other
organizations.
When we are able to contribute to society, that's just
another way for us to be treated with dignity and respect, and
Americans with disabilities deserve to be treated with dignity
and respect. And those are just some of the ways we can help
people get integrated employment and be happy and live a happy
life. Thanks.
The Chairman. I'm going to move from you right to your
neighbor to your left. Deb, you're the mother of a son with
significant disabilities. I think Ms. Petty just made a very
profound statement about work and the quality of life and
friendships, all the things that go with having employment that
challenges you and gives you a pathway upward.
Again, what are our goals, or what are our expected goals
for employing persons with significant disabilities? What
should we be looking at? What kind of goals--or if that's not
the right question for you, just go ahead and tell us how you
feel about this.
STATEMENT OF DEB PUMPHREY, PARENT ADVOCATE, OTTUMWA, IA
Ms. Pumphrey. Thank you for having me here today, first of
all. And second, I guess my goal always for my son, who has
significant intellectual disabilities, was for him to work in
our community. I have come to realize, though, that without the
significant and intensive amount of support that he would need,
he is not able to do that. He functions at about a 4- to 5-
year-old level, and to have a person with that level of
intellectual disability working in the community without the
intensive support just has not been possible with Joshua.
He works in a sheltered workshop, and I believe that that
spectrum of employment needs to be there for persons with
significant disabilities, just for the support that he
requires. Inside the sheltered workshop he does have
employment. He is shredding paper on a pretty regular basis
with a one-on-one staff person that I am able to employ through
the Consumer Choice Options Program through the Intellectual
Disabilities Waiver. So he has his one-on-one support person
who is there a few hours a week for him to have employment.
We've had to be creative in how we've looked at his
employment opportunity, and I'm here to tell you that the
difference in the quality of his life as a result of that few
hours a week of employment is significantly different. We've
seen a reduction in his behavior problems. He's just extremely
content with life at this point. So just a few hours a week
have made a very significant difference in his life, and in
order to do that we've had to be creative and look outside the
box.
The Chairman. How long has he been doing this? How long has
he been at the workshop?
Ms. Pumphrey. He's been at the workshop since he graduated
from high school, so about 5 years.
The Chairman. Five years?
Ms. Pumphrey. Yes. We've been able to do the employment
from inside the workshop for probably about a year. We had to
get creative.
The Chairman. OK. Thank you.
I already introduced Dr. Fred Schroeder. Welcome. I'm sorry
you got held up someplace, wherever that was. I don't know if
it was traffic, but things do get held up around here. But
welcome, Dr. Schroeder, we just started our panel discussion.
I just want to say again, I kind of want a free-flowing
discussion. I don't want to have to always jump in and
recognize somebody. If you have something to add, if you want
to say something, we have an old process here where you just
take your nameplate and turn it up like that, and I'll call on
you.
We're coming back to Ms. Petty right away.
I want to get other people involved in this discussion now.
Go ahead.
Ms. Petty. I just wanted to make a point to Ms. Pumphrey,
one of the reasons her son has that support in the workshop,
why can't we spend the money to get him support in the
community? Because there are many recycling areas, and I'm just
wondering why did there have to be a segregated place?
The Chairman. OK. Your question basically is if Deb's son
needs all the supportive services for--was it 4 days a week or
something you said?
Ms. Pumphrey. He's only working about 2 hours a week,
actually.
The Chairman. If he needs all that for a sheltered
employment, you're saying why shouldn't he have that supportive
services for nonsheltered employed?
Ms. Petty. Right.
The Chairman. OK, fair question. Any observations on that?
Again, I'm still getting back to the right spectrum of
employment options. I'll be provocative here. There are some
who are saying we should have no sheltered employment
whatsoever. There are others that say that sheltered employment
is a necessary part of a spectrum of different employment
opportunities.
What we're trying to do here and what I'm trying to do in
the WIA bill is to change the default position. The default
position for people with significant intellectual disabilities
in the past has been sheltered workshops. I want to change that
default position so that it is integrated competitive
employment.
However, there may be some who, through their own choice,
their family choice, their own individual choice, may feel more
comfortable, more fulfilled in sheltered employment. Who am I
to deny that to someone that may feel more of a kinship there,
more of an ability to grow, and maybe we need to talk to those
that have sheltered workshops. I don't know. I don't know all
the functioning of it, but get them to provide pathways of
growth for people that are working there.
And since we've talked about that, I don't know who had
theirs up first, but I'll go with Mrs. Moore, and then I'll go
with Ms. Neas.
STATEMENT OF RUBY MOORE, EXECUTIVE DIRECTOR, GEORGIA ADVOCACY
OFFICE, DECATUR, GA
Ms. Moore. Thank you, Senator Harkin. I appreciate the
perspectives of my two colleagues so far, and maybe I can help
a little bit to bridge the gap.
I think when we're trying to advance in anything, we're
trying to make things better, we're trying to help people have
good lives, trying to actually have a piece of the American
dream, the American way, that we start with what we know and we
start with our strengths. And our strengths, what we know is
that people with very significant disabilities are working in
the community, are working in competitive and integrated jobs,
real jobs for meaningful wages.
We know that, and we have decades of research and
demonstration now of what people are capable of, and I'm well
aware that often we have knowledge in our field from an
individual perspective about how to go about supporting people
with very significant disabilities to have great jobs that
isn't necessarily common knowledge across all of the
communities where people live and may not be immediately
available.
But what we do know is that we've just learned a lot that
allows us to say we really don't need to create special places
for people with disabilities that are segregated and that are
paying sub-minimum wages. I don't say that lightly, and I
recognize that if we're moving away from that, we have to do
that in a very planful, measured, careful way to not create an
adverse impact on people, and for people to actually have real
choices.
One of the problems with heavily investing in segregation
is that it takes away choices for people. So I'll just speak
very briefly on some of the things we've learned. We've learned
a lot in the last 35 years. If we're talking about sub-minimum
wages, we've learned a lot in the last 73 years.
The Chairman. Right.
Ms. Moore. Some of the ideas that got advanced in order to
let veterans returning from World War I coming back to an
industrial manufacturing economy don't necessarily hold today
as what people with significant disabilities need. But we've
learned a lot about how to discover what people are good at,
what they love, as I like to say what makes people sparkle and
shine, their unique contributions, their interests, their
talents, their support needs, the environments in which people
do well. We've learned a lot in terms of the advances with
assistive technology.
You talked about workplace flexibility, Senator. I think
you're precisely on point with that. We've learned a lot about
how to customize and negotiate relationships between potential
employees with significant disabilities, even just people who
have a very limited frame of reference for choosing work or
knowing what they want to do, and employers who have unmet
needs, even in this economy, and being able to blend those two,
those relationships together in a way that works for the
employer and the employee.
And, Senator, to your point, you're precisely right. I'm an
employer. Seventy-eight percent of my employees have
disabilities, and the very things that we do to performance
enhancements, restructuring the environment, creating jobs that
meet our needs but I didn't have a job description for before I
met the person who could do it, it's that kind of inventive and
imaginative process that allows the entire workforce to do
better, not just the person with a significant disability.
I'll just move along because I know everybody wants to
talk. But I would like to just say that when we're thinking of
a spectrum of services or options, I don't think the spectrum
should be predicated on an old notion that people aren't ready
to work. People are ready to work. And even in this economy,
employers still have unmet needs.
When I think of the spectrum, I think what's culturally
normative, even culturally valued. How did any of us learn what
we were interested in, what we might be able to do, how we
might be able to make a unique contribution? I know that I
didn't grow up saying I think I'll be a protection and advocacy
system director. I don't know when you decided or discovered or
figured out that you wanted to be a U.S. Senator and to shape
national policy and help Americans have good lives, but I
suspect it was a whole series of life experiences.
The spectrum begins, as you pointed out, it's a lifespan
kind of spectrum. It's not a spectrum of boxes that we have to
move through in order to finally get a real job. You start with
supporting young people and their families early on to say
what's the best way to teach my child with a disability, along
with my other children if I have other children, how to have a
work ethic? It begins by doing chores. It begins by getting
support to say how do I include my child with a significant
disability to be part of this family in a way that they have
responsibilities? That's how you start beginning a work ethic.
In school the teacher turns to certain kids and says will
you help out with this. This is where people learn how to solve
problems, work as a team. These are all the social skills you
need in order to be successful on the job, which turns out to
be more important even than being noticeably, objectively
productive.
Then there are summer jobs and there are internships, and I
think we should encourage and support schools to give people
real-life work experiences regardless of type or level of
disability before they graduate from school, and then to create
that path to employment that doesn't begin with the presumption
that you have to get ready. You will have been getting ready.
I think as we go on today we'll probably talk a lot about
different kinds of models that have existed for a long time,
and our best practices, customized employment, supported
employment, which we'll talk more about probably, actually grew
out of and on the shoulders of what people have learned in
sheltered workshops. So we're not dismissive of services that
have been around for a long time, but it is time to move beyond
segregation and sub-minimum wages.
The Chairman. I want to ask Ms. Neas to respond also. But
it seems that voc rehab that we've all been very supportive of,
and they do a great job, but it came to my attention I guess in
the last few years that voc rehab has been focused mostly on
people with physical disabilities and has not been focused on
young people with intellectual disabilities and working with
them at an early stage. Like you say, the spectrum is not a
bunch of boxes. It's sort of a continuum, and working with
young people with intellectual disabilities to challenge them,
to help them build their relationships, help them to think
about what their future is going to be and what kind of work
they want to do and what they might find challenging, what
they're capable of doing, that's just all part of it, and we're
trying to get voc rehab looking at that.
Ms. Moore. Good.
The Chairman. Ms. Neas.
Ms. Neas. Thank you.
The Chairman. You're so soft-spoken, you might pull that
in, Katy, a little bit. There you go. Thanks.
STATEMENT OF KATY BEH NEAS, SENIOR VICE PRESIDENT, GOVERNMENT
RELATIONS, EASTER SEALS, OFFICE OF PUBLIC AFFAIRS, WASHINGTON,
DC
Ms. Neas. I want to just add a couple of things, and I
totally agree with what everyone has said. I think one of the
challenges, at least from my perspective, on this issue is I
believe everybody's got a very valid point in this discussion.
For me the thing that's most important is we need to build
on the investment that we've made in the early intervention and
special education services that many of these young people have
gained. Are they getting what they need from the school system
to make them ready for the world of work? I would argue,
unfortunately in too many instances, the answer is no.
We are seeing in our programs kids that are exiting the
school system without the ability to have an understanding of
the concept of productivity and that if you're going to be
successful in an integrated community-based setting, you need
to be able to demonstrate the productivity as another person
who could do the same job.
The Chairman. You mean exiting the school system.
Ms. Neas. Right. And the other thing that we're hearing
from our affiliates is this concept of taking feedback and
instruction from your supervisor, that those are two places
that we're seeing kids coming out of school not having the
skill set that they need, and that's something that we really
want to have be a part of their education before they leave.
The other thing we have seen over time, and I think
especially in the last 20 years, a whole change of expectations
about what people with disabilities can and cannot do, starting
in 1975 with the start of IDEA, where kids had a right to be in
the school. In 1997, we clarified that right. That meant you
had the right to be taught the same stuff as your nondisabled
peers. What a concept. You could be there but not be educated.
That still, unfortunately, was a challenge in 1997.
In 1986, we established the early intervention program,
infants and toddlers getting a really good start, and the other
thing of educating their parents that it was OK to have high
expectations for their child. Again, it sounds simple to say
now, but it was transformative. If you talk to parents whose
kids have benefited from early intervention, as you and I did
earlier this summer, kids that had very little skill sets when
they were 1 and 2 that are high school graduates looking
forward to their future, ideas about their careers, there's a
connection between those two things, and we need to really
enforce those concepts that we have to help families understand
to have high expectations. We have to give kids the skills that
they need to be successful, and that those are very important
predictors for how they're going to be successful in the world
of work.
I think the other thing I will say, and let other people
talk, is this whole concept of job exploration and internships,
and one of the things that especially a number of our
affiliates are doing for kids that are leaving high school,
trying to figure out what they want to do, spending a month
over the course of 6 months in six different places to see do I
like working at Kinko's, do I like working at a hospital, do I
want to work in the grocery store. Most of us learn what we
like by giving it a shot. That needs to be true for people with
disabilities, and they need the supports that they need.
One of the things that we've been very frustrated with is
finding internships for people who need very significant
supports. It's one thing to find an internship for someone with
a disability who just needs an accommodation. It's another
thing for someone who needs the kinds of supports to do the
job, and I think that's a place where we'd really like to see
some leadership from employers to help make those opportunities
more available.
And then I just did the math, and I had no idea what I
wanted to do when I grew up, and I didn't really know it until
I got an internship in my congressman's office in 1984, and
that absolutely shaped my destiny. I would say for the rest of
us, internships, job exploration was how we figured out what we
liked to do and whether or not we had any aptitude in it, and I
think that's something you don't know until you try, and I
really think we need to create more opportunities for people to
be able to try more things with the supports that they need to
be successful.
The Chairman. Very good. I want to talk about that program
that we looked at this summer, because that's what it was,
young people trying different things.
I want to go to Mr. Pearson. But before I do that, I want
to recognize again someone that has just, for all the years
I've known Senator Mikulski, even when she was a congresswoman,
I didn't know you in Baltimore, but I knew you when you came to
Congress. She's just been someone who has been one of the great
supporters of moving the concept of how we treat people with
disabilities, how we integrate them in our schools, in our
environment, providing work opportunities.
I'm just proud and privileged to be her friend, and she is
the ranking person on this committee, Senator Barbara Mikulski.
Statement of Senator Mikulski
Senator Mikulski. Thank you very much, Senator Harkin.
Picking up on what Kathy said, I'm sitting next to a legal
aid lawyer. I'm a social worker, started out as a child welfare
worker, but I didn't intend to do that when I was 9 years old.
I saw a movie about Madame Curie, and I wanted to be a
scientist, to win two Nobel Prizes and marry a Frenchman.
[Laughter.]
I kind of did that work that you said, which is try it out.
I was klutzy in science but now fund a lot of the science
programs. We're all friends, and I think we see this as a bit
of the good news is that people with so-called disabilities are
often underestimated in terms of their capability and their
competency. There's a tendency to either ghettoize or want to
feel sorry for people, and so much has changed, as you've said.
I want to thank Senator Harkin for his ongoing advocacy.
And we need to look at how the fact that one size is not going
to fit all in terms of our regs. I believe that the digital
world, the digital economy has changed everything, providing
opportunities for people that they might not have had in the
analog or heavy-duty manufacturing world that our economy was
once built on.
We are beyond the sheltered workshop. We're just beyond
that now because our economy has changed, and I know from
within my own State I have people with varying views. I love
the fact that the National Federation of the Blind is
headquartered in Maryland and in Baltimore. I love the fact
that they picketed me to get my attention on this issue. As an
old organizer, it was a great approach. And we need to look at
the issues between people with one set of challenges in their
life and in the others, particularly around issues like autism,
intellectual disabilities, and chronic mental illness where
there might be an ongoing history of schizophrenia.
What I see--and I'll just stop here--on one hand, by being
on the Intelligence Committee, I've visited a variety of
agencies, and boy, what a surprise, and here's the surprise,
not that we weren't doing a good job to stop bad things from
happening with us. But when I went to the National Geospatial
Agency, our eye in the sky, there were a significant number of
people with severe significant hearing loss that were there
standing sentry to protect America. They didn't have to hear.
They had to see. They were full-time employees, 12s, 14s, 15s,
heading to the senior executive corps because of what they
could do.
If you went to the National Security Agency, which is again
our listening post on the world, our code-breaker monitor,
there were people with significant visual impairments working
there because they didn't have to see. They had to be able to
hear, and they had to be able to do math to break the codes.
Doing math had nothing to do with whether you could see or not.
And when I went to one of our private sector sites, as I
looked at a mission control place, somebody couldn't get up to
shake my hand because he'd had amputations because of wounds in
Iraq, but he could still be there fighting on cyber security
because he had the right training and the right stuff and was
earning full-time wages to do a full-time job protecting
America.
We're in a different world, and I'd just use that because
you say, ``well,'' but then at the same time we have people in
our community and in our own families with autism, intellectual
disabilities. They want to work. Work is often their most
important part of self-identity, structure, and the ability to
be independent, not only from a financial standpoint but that
sense of competency.
So when we look at it, some are going to need help. Some
might even need subsidies. Some might need subsidies through
different kinds of wages. But I think Washington and the way we
go about it, from vocational ed to vocational rehab, we are in
a different economy. We need to seize the concepts of the
economy and then make sure we are not still operating with a
1950 manufacturing analog mentality.
Between meds and the digital world and all the other
things, I think we can have a breakthrough that is fair and
just, and just listening to you is one inspiration, and I want
to thank you for the work you do every day. It is inspirational
leadership.
And then the other, how do we parse this, and in parsing
it, we don't ghettoize.
Thank you for what you do, and let's work together and try
to break this code of economic justice and economic reality.
The Chairman. Thank you very much, Senator Mikulski, social
worker or legal aid lawyer.
Senator Mikulski. Born-again do-gooders.
[Laughter.]
The Chairman. You're right, I never thought I'd ever be a
Senator.
[Laughter.]
Never heard of it at that time.
Mr. Pearson, here you are. You're a small business owner.
You have a diverse workforce. We sort of got off it a little
bit, but that's OK, the spectrum of opportunities and how you
see it as a business owner yourself.
STATEMENT OF MICHAEL PEARSON, PRESIDENT AND MAJORITY
SHAREHOLDER OF UNION PACKING, LLC, YEADON, PA
Mr. Pearson. First of all, thank you for inviting me. And
I've had the misfortune or good fortune of having worked in
corporate America, been a small business owner, and I've seen
the spectrum, and I believe there are opportunities, and often
we as business owners or leaders of businesses are not open to
opportunities we can offer.
And to our advantage, we begin to open up and employ
individuals, we get loyalty, we get folks who come to work on
time, and we get a competitive group that add value to our
enterprise. My experience, while I don't have experience with
those with severe disabilities, I have been very successful
employing individuals who had some learning differences.
Nineteen percent of my workforce--and we're 70 employees
making fast-food packaging for some of the entities around the
country. I'm sure you've all had some nuggets or some form of
fast food in our packaging. My workforce, my managers, at first
were very apprehensive, did not embrace bringing on these
individuals, and were fearful. But with education and
commitment we soon realized, wow, they can do the job, and they
can do it well. And I think that fear and apprehension is met
in several sectors of the employer spectrum, and it's important
that education of employers, to go back to Ms. Petty's
comments, that all of us need to learn something.
And in small business and mid-size business, we are
especially equipped with the ability to make those
accommodations and changes that can facilitate successful
employment for individuals with disabilities.
The Chairman. Let me ask you this. Do any of the
individuals that work for you require supportive services at
any point during the workday? Do they require any kind of
supportive services like Ms. Petty was talking about, or I
think Ms. Pumphrey was also talking about? Just sometimes
people might need a little bit of support during the day, not
all the time but once in a while they might need something. Do
you have anything like that?
Mr. Pearson. My employees have not, but they have received
support when they first entered my workforce, and that was the
coaching and the direction and some of the soft skills that
lead toward individuals being successful, and that is a burden
lifted off of my HR department, where these are individuals
that come ready to work. And often that's supported by
nonprofits or some entity that comes in and allows me as a
business owner to have a pool of talent where I know those
things have been screened and they're coming work-ready, and
that relieves some of the fear.
The Chairman. I have to make sure you meet Randy Lewis
sometime with Walgreen's. That's a little bit bigger business
than yours.
Mr. Pearson. Yes, a little bit bigger than us.
The Chairman. But I remember he made the point here at a
hearing that when they first started hiring people again with
intellectual disabilities, that they always showed up at work
on time, they were very productive because they could focus on
one aspect of their job and become very productive on it.
On the physical disability side, I always use the example
of my own brother who is now deceased but who was deaf, and Mr.
Delavan, who had a manufacturing company in Des Moines in the
early 1950s and started hiring deaf people. It was very noisy.
Of course, that was before we had a lot of OSHA stuff and all
that kind of stuff. So it was very noisy, but we found out that
deaf people didn't care how noisy it was, and they could focus
on these little machines and stuff that they were working on.
They found them to be the most productive of their workers.
Mr. Pearson. Senator, you're very right. As an employer, I
should be concentrating on what people can do as opposed to
what they can't do, and that begins to change my mind set. I
can then farm for talent in places that are traditionally not
areas we would look.
The Chairman. Ms. Neas raised an interesting point, and
that is about early intervention. I think a couple of you
mentioned it. You mentioned it, too, Ms. Moore, about early
intervention programs, and also giving people the opportunity
to explore different job opportunities. That's what you and I
saw this summer. I was very enthralled by that, where they
could experience internship programs and find something that
fit them, they liked it, they could do it.
I think for many families with children with significant
disabilities, it's tough enough just to get through the day and
to get the kids to school, fight with the local school board to
make sure that they get adequate instruction, and then a lot of
high school kids have internships and do different things, but
kids with significant disabilities hardly ever get that
opportunity.
We need to be looking at ways, and that's where I'm hoping
that voc rehab now can begin to focus on young people to get
them those kind of internships in the summertime and things
like that, after-school jobs, so that they can test a variety
of different avenues.
Ms. Neas. I think to add to that, Senator Harkin, is some
of the things that Mr. Pearson said, having people have the
skill set to be in a work environment, not only have the
competency to do the job.
One of the things that we struggle with are people with
significant autism or Asperger's who may be off the charts in
terms of their intellectual abilities, you know, Ph.D. on top
of Ph.D., but can't hold a job because they don't have the
skill set, the personal human-to-human skill set. I think those
are other things that are really important for us to make sure
that kids leave high school having some guidance in that area
so that appropriate behavior to the best of their ability is
something that is a goal, and clearly there are going to be
people for whom that is not going to be possible as a part of
their disability. But I think trying to help those people who
can acquire that skill is going to be very, very important.
We are also doing a lot of work with returning Afghanistan
and Iraq veterans. Most of these folks, whether they've had a
physical injury, because so many of them have had brain
injuries, they've got a lot of issues they didn't have before
their service. One of the concerns that was raised earlier was
about flexibility within a job, and we've got a protocol we're
working on with employers that says that person may not be able
to be there every morning at 9 o'clock. Is there a way to
structure the job so that they can do the job if they show up
at 11:30 or at 1 o'clock? And please don't fire them if they're
late 4 days in a row because that's part of what they're trying
to figure out, how they're sleeping, how they're managing the
morning routine, and that it's those sorts of things that I
think they are bringing to the environment. It's not just a
luxury that people need but it really is an accommodation that
people who are navigating a whole new world for themselves need
in order to make themselves financially stable.
The Chairman. I see Dr. Schroeder has his nameplate up.
Fred, I recognize you.
STATEMENT OF FRED SCHROEDER, Ph.D., FORMER COMMISSIONER OF THE
REHABILITATION SERVICES ADMINISTRATION, DEPARTMENT OF
EDUCATION, INTERWORK INSTITUTE, SAN DIEGO STATE UNIVERSITY, SAN
DIEGO, CA
Mr. Schroeder. Thank you, Senator, and thank you for
holding this discussion, but also for your many years of
leadership in advancing the dignity and integration of people
with disabilities.
As far as whether vocational rehabilitation under-serves
youth with intellectual disabilities, I'm not familiar with any
data to suggest that. There is a good bit of cooperation
between vocational rehabilitation and school systems, and
clearly transition is something that we all see as value-added
and very important.
One thing that I would highlight is that during the 1998
amendments to the Rehabilitation Act, we added a provision that
individuals who were receiving Social Security Disability
Insurance or Supplemental Security income would be presumed
eligible for vocational rehabilitation as a way of focusing the
program on people who demonstrably have significant
disabilities.
I'd like to speak just a moment to the issue of the
spectrum of options. In my view--and, of course, it's a very
complicated issue. But in my view, having segregated work
settings does not enhance the options for employment for people
with disabilities but constricts the options. And I say that
because as long as society is allowed to believe that there is
a place over there somewhere for those people, people with
disabilities will continue to suffer misunderstanding, which
leads to diminished opportunities for integrated employment.
I firmly believe in choice, but I do not believe that the
majority of people who work in sheltered workshops are there
out of choice. Clearly, there will be some. But when you have a
two-thirds unemployment rate among adults with disabilities, a
very difficult time finding integrated employment, and the only
option that you can see available to you is a segregated
facility, that's not choice. By definition, choice means
options. And in order to facilitate those options, we have to
look for creative ways to support integrated work.
I don't want to belabor this concept, but I'd like to add
just one additional thing, the attitudes. One of the problems
that people with disabilities face is that we are regarded as
broken people. We're regarded as less capable by virtue of
disability. I don't think people think it consciously, and I
certainly don't think they mean it with any ill will. But what
that means is if I go to a facility, the presumption is that I
will likely be somewhere below the productivity standard by
virtue of disability, and that I might, if I am very skilled
and work very hard, I might get up to the productivity
standard, but doing what kind of a job? A job that at its high
end is still a very low-paid job.
I'm 54 years old. If I went to a facility and I was having
to--I know of a facility that makes mattresses, and they're big
and they're heavy, and as I say, my back is not what it used to
be, would I be up to productivity? I don't know. Likelihood
would be not. But even if I were, I'd be making $7.25 an hour.
The need for customized employment, the need for employment
that does not emphasize the person's disability but the
individual's strengths and interests, that is the underpinning
of the real solution to the unemployment and under-employment
of people with disabilities. And if I go to a facility and by
nature of what contracts they have, they have two or three or
four different jobs, that is such a narrow spectrum, and on top
of that those jobs again, by and large, are very low skilled,
low-wage jobs.
I believe that while there are people for whom segregated
work is something that they value, I just want to reiterate
again, I don't believe that the vast majority of people with
disabilities, if given the option for integrated work, would
select segregation.
The Chairman. All right. Thank you, Dr. Schroeder.
Jonathan Young, Dr. Young.
STATEMENT OF JONATHAN YOUNG, Ph.D., CHAIR, NATIONAL COUNCIL ON
DISABILITY, WASHINGTON, DC
Mr. Young. First of all, Senator Harkin, thank you for
convening this gathering, and thank you for your longstanding
leadership for our community. As a Maryland resident, I also
want to thank Senator Mikulski for her longstanding leadership.
There have been a lot of great points made, and I don't
need to repeat my agreement with all of them. I'd like to try
to focus on one theme, though, that I see emerging here, and
it's a concept of bridging. Let me talk about this in a couple
of respects.
As to the spectrum, as with all things, I start with the
goals of the Americans with Disabilities Act, equality of
opportunity, full participation, independent living, and
economic self-sufficiency. What does that mean? That means that
we want the same options, the same opportunities as all
Americans without disabilities have.
Part of what we've been hearing in our work at the National
Council on Disability is a huge gap between Federal policies
and what's actually on the ground day-to-day. On one level it's
simple to articulate policies. It's sometimes harder to get
those policies translated down to the ground.
So there's a bridging piece that we need to figure out to
close that gap. As you've heard from many people here today, we
know what works. There are so many stories of where people have
figured out creatively how to go about finding ways to meet
their potential. Not everybody knows what works, though.
People, Ms. Neas referenced returning veterans who have
sustained new disabilities. They really need to figure out what
works, and they're not necessarily engaged in the community
that has all those paths laid out for them.
Since we know what works but not everybody knows how to
make that work, the expectations, the attitudes do become so
important. We can't micro-manage policies that directly get to
that one-on-one collaboration for each individual, but the
framework of expectations has such a profound impact.
There's a phrase that I like, ``the dignity of risk.'' Ms.
Petty referred earlier to dignity and respect. To me, when you
talk about the dignity of risk, it means that every individual
should have the opportunity to self-determine their own future,
to have informed choices, the opportunity to make informed
choices, to risk both having the chance to succeed but also the
chance to fail. I don't mean to say that the goal at all is to
fail, but there's something inherent in the opportunity to try,
and we're not always going to be able to guarantee a successful
outcome.
The other point that I want to mention as far as bridging
is we have an inherited world, and we have a world that we want
to become. We can't necessarily change the world instantly, but
we need to find the strategies to get there.
One of the parts of the inherited world I think we struggle
with is a focus on tasks, not skills. One of the things that
I've heard repeatedly from employers is they're not looking for
people that have been trained in a specific task. They're
looking for people who have the skill sets to succeed on a job
where they can help guide them to the kinds of tasks that need
to be undertaken in a particular workplace.
I think part of the model we've inherited is, well, let's
train an individual to do one specific task, as if that task is
going to be viable for the next 50 years. That's not a great
investment strategy. We're better off investing in skills that
are going to be adaptable to the environment as it changes.
Now, the other final point I'll make about bridging is your
definition about people who need supports. There are economic
aspects to that. There are costs associated with supports. So
we need to figure out how to align resources, align the
incentives in ways where resources we're dedicating to provide
supports are most effectively aligned with effective self-
determination and informed choice.
Maybe I'll just pause there.
The Chairman. Jonathan, you're saying that the theme that
you kind of picked up here that kind of cuts through everything
is the opportunity to make informed choices, the opportunity to
advance, but also the opportunity to fail.
Now I'll say something maybe provocative to those who don't
know this community very well, that sometimes I think people
feel that someone with a disability, especially someone with an
intellectual disability, we just can't permit them to ever
fail. Why not? That's part of life. That's part of growing. I
mean, sure, they may try something. Well, I've tried things in
my life that I couldn't do either, that I failed at. So some of
us are skilled in different ways. So what's wrong with building
that kind of character to understand, well, OK, you tried that,
it's not your deal; try something else. I think a lot of people
that are not too much involved in the disability community
don't understand that. I think somehow it's still perhaps part
of what someone brought up here, a little bit of that pity,
protectionism, have to take care of people, coddle, all that
kind of stuff, so we can't permit people to fail like that, can
permit people like me to fail but not people with significant
disabilities.
Is that sort of what you're talking about?
Mr. Young. Well, yes. And if I can follow up on that and
perhaps use one story from my own personal experience as a
graduate student in the history program at UNC-Chapel Hill, my
first major writing seminar was with a Professor Peter Walker.
He started out his first statement at the beginning of the
seminar, and I can't convey his southern accent, sort of
southern gentleman very slow presentation, but he told us every
single one of you are going to fail this semester, and it took
us all aback. We like to think that we're capable and competent
people. And he kind of let that sit for a while for us to think
about it. And he said, ``the question is, can you have an
elegant failure?''
[Laughter.]
His point was none of us were going to write a perfect
paper, so just sort of get that out of the way. But let's focus
now on, in the process, can you do an elegant job of failing
that's going to show that you've advanced.
One of the things that we've talked about here thus far is
expectations, and I think Dr. Schroeder referenced this,
there's an assumption that people start out as being less than
are deficient. I'd like to submit that in many respects, the
people most equipped to succeed in our workplace are people
with disabilities because each and every single day we have to
develop strategies to adapt to a world that wasn't really set
up for us.
The Chairman. Good point.
Mr. Young. And I observe Dr. Schroeder here working with
the microphone, with his name tag, and with a watch. I think of
the ways that I navigate the world with my physical disability.
There are things that we probably can't even put our fingers
on, but there are aspects for individuals with disabilities and
their families who are, from the moment of the disability,
continually developing skills to think creatively about the
world.
So like you said, we don't need to be guaranteed a chance
to succeed. We do need to be guaranteed a chance to try, and if
that means failing, many of the things that have been most
helpful to me in my life have been where I failed. It hurt. It
was awful. But I learned from it and went on to be better.
The Chairman. Sure. I think that's part of life's
experiences.
I just see Ms. Neas has her sign up.
Ms. Neas. I want to switch tactics just a little----
The Chairman. Oh, I'm sorry. Janet Samuelson. I'm sorry.
Your name fell over, but you had your--I'm sorry, Ms. Neas.
We'll come back to you.
Janet.
STATEMENT OF JANET SAMUELSON, PRESIDENT AND CEO, SERVICESOURCE,
ALEXANDRIA, VA
Ms. Samuelson. Senator Harkin, first and foremost, thank
you so much for your advocacy on this important issue.
I think probably one of the reasons that I was invited here
is not only because we serve people in a lot of different
geographic areas and different geographic settings, urban and
rural, but also we serve people with a lot of different types
of services and different disabling conditions. Even when I go
back to the definition that you provided way up front of
someone with the most significant disability, there's a really
pretty broad continuum of service needs and employment needs
within that type of a definition.
I think that we all know that we don't have a comprehensive
or holistic service delivery system for people, or funding
system, support system through the Federal laws. As a service
provider or broker between policy and Federal programs or State
and local programs, we're working in some cases with WIA; we're
working with the rehab act and the vocational rehabilitation
systems; we're working with school systems and how transition
plays out; we're working with local, State, and Federal
resources that may be brought to the table; foundations; and in
some cases charitable dollars.
But more importantly than anything else, I think if I look
at the range of people that we serve, we operate services where
we are the privatized vocational rehabilitation system in
certain areas as a pilot project, all the way through day-
habilitation, work or nonwork activity type programs, that I
probably serve people through our five organizations that
represent every one of the viewpoints that you've heard here.
So we have to be the integrator of understanding all of those
perspectives and all of those ranges of needs.
When I look at the different funding systems and some of
the ideas that you've heard here today, I think there are some
very important things on the positive side. Senator Mikulski
was talking about the changing labor force and how policy is
still reacting to a previous design of labor. I think there are
issues around assistive technology and access to technology and
changed tools in the workplace, changed demands of the
workplace.
There are a lot of opportunities for creative incentives.
We're talking now to one of our State VR programs about looking
at creating pathways for people from some of the contract
employment opportunities directly into Federal employment.
I think there are a lot of good, positive things that can
be done to move people with significant disabilities, by
whatever your definition is, into the labor force and through
the labor force, but I also think there's a little bit of a
reality check that we need to think about when you're talking
about policy versus implementation. You mentioned that with the
recent recession and some of the downturn, that people with
disabilities were exiting, not through their own choice, the
labor market at 10 times the rate of other people.
I know from our experience, because we try to be very data-
driven in looking at what we do, that we traditionally had been
able to place, let's say, 1,200 to 1,500 people a year with
community employers, with or without supports. That number,
when the economy started tanking, got down as low as 500 people
a year, less than half of the entry into the market for people,
and that's, again, by whatever your definition of severe or
significant disability is.
And so we have to deal with the realities of these various
programs. We have to deal with the realities of resources that
are available to support people and get them out. You have to
deal with the realities from an employer standpoint of
reasonable versus unreasonable accommodation and how you move
that bar to a certain extent.
And again, when I look at all the numbers of people that we
serve in my 30-plus years in the field, people have been able
to--there's no question there are better opportunities
available now than there have ever been. There's better
understanding. There's a lot more implementation of good
options for people, and certainly there is a lot more that we
can be doing in those areas. But there are still people who,
from a choice or developmental standpoint, have structural
barriers to employment that don't allow them to enter the
market in what would be considered a full and open, integrated,
competitive employment definition.
I think it's so critical that we not negatively impact
opportunities, we not restrict opportunities and create cliffs
that mean that you have haves or have-nots.
My experience in working with the changed definition in the
Rehabilitation Act program 10 years ago or so was that when you
are in an environment--and so this isn't a slam at the VR
system, because I think they're doing good work. But when you
are in an environment where there are constrained resources,
you don't have all the resources to serve people, and you have
a definition that says people need to be able to achieve this,
and what happens is that you end up having, with limited
resources, people being served who can achieve certain
outcomes, as opposed to over time develop to those outcomes.
I think in every one of our funding sources and our policy
sources, it's important to be sure that we are finding ways
within each of those to create and incent and develop new
opportunities, as opposed to restrict opportunities while we
develop, again, a broader continuum, a more organized
continuum, and move people more and more toward the desirable
goal, I believe, for every person with a disability, which is
participation in the workforce.
The Chairman. Exactly. I just want to say, Ms. Samuelson,
that I understand the realities of resources. I understand the
realities of accommodations. Some of us, though, are trying to
change those realities, the perceived realities. The perceived
realities are that supportive services just simply cost a lot
of money, and we don't have that money.
On the other hand, we seem to then say, ``well, but OK,
we'll do SSI and we'll do Medicaid, Title XIX,'' we'll do all
those things, and that costs more money. But somehow we've got
to change that reality of what resources are really most
efficient.
But I know as a practitioner, someone like you who is out
in the field every day, I know you have to deal with those
realities. I'm just saying I hope that there are those of us--I
see my good friend Senator Merkley is here. I know he is also
interested in changing some of those realities, too, about how
do we deal with these resources so that the resources we have
are focused more on providing the opportunity to make informed
choices, the opportunity to have early intervention programs,
because we know those are the most cost-effective if you just
look at it from a budgetary standpoint, a resource standpoint.
Ms. Samuelson. I was just going to say to that point
exactly, when you see restrictions in services, as you found in
the rehab act, what happens is people that might have been
served through that funding stream being shifted into Medicaid
waiver programs, where the services are more expensive and the
design is not oriented toward work, permissible work in the
same way.
The Chairman. Absolutely.
Now I'm going to recognize Ms. Neas.
Or, Senator Merkley, would you like to interject something
here right now? I'll recognize Senator Merkley, who is, again,
a very valuable member of this committee and was also a very
valued member of the Oregon legislature, where he was the
leader and I know he's worked on these issues for a long time.
Senator Merkley.
Statement of Senator Merkley
Senator Merkley. Thank you, Mr. Chair.
I really just want to thank you all for coming. This
underlying issue of how you provide work and employment
opportunities that both provide financial resources and an
appropriate workplace is very important, for all workers,
whether they have disabilities or not. A job is something that
not only provides finances, but it feeds the soul. And so
trying to wrestle with the best possible way that we can create
a framework for that employment is a very important issue. On
my team, we've been talking to folks about trying to understand
the pros and cons of different approaches, and hearing your
thoughts here is very useful. Thank you for coming and
wrestling with it.
The Chairman. Thank you very much, Senator Merkley.
Ms. Neas, you're next. Then I'll recognize Mr. Pearson.
Ms. Neas. I want to just add two concepts that have been
raised. One is this whole notion of assistive technology. We
are seeing, particularly in an education environment, that kids
that we thought had very limited cognitive abilities, when
they're given the right adaptive equipment, are able to
demonstrate that they don't have significantly different
cognitive abilities. I think we need to make sure that people
who need certain devices and supports get them, and that that
can be life transforming.
I think of our friend Bob Williams. When I first met him,
he had a laminated board that he pointed to, and now he's got
this very groovy electronic talking liberator that makes
communicating with him a lot easier. I think about if Bob had
to do what Fred was talking about, working in a mattress
factory, that wouldn't work so well for him as a person with
significant cerebral palsy.
I think being able to give people the tools they need to do
what they can do is something that's really important.
And then the other component I think is support employment
is something that's just grossly under-funded, and we really
need to be able to give people those ongoing, not time-limited
but ongoing, on-the-job supports, that people may need
different levels during the course of whatever it is they're
doing, but that concept of ongoing, long-term supports for
people to be in the community working is something that we're
just desperate for.
The Chairman. Technology, you're right. I'm glad you
mentioned Bob Williams because he's one of the most fantastic
writers I've ever met.
Ms. Neas. Exactly.
The Chairman. Just a beautiful writer. But with severe
cerebral palsy, it would always hold him back. Now, through
technology, he can let that ability that he has, which is
incredible----
Ms. Neas. And having a conversation with him before this
device required a great deal of determination to pay attention
to each word and to be able to remember 20 words ago to get to
the end of the sentence what he was saying, which you could do,
but it required a great deal of concentration beyond a typical
conversation. And so to have him now be able to just
communicate directly is a much more effective way.
The Chairman. Incorporating technology is very important.
Let's see. Mr. Pearson, you had your----
Mr. Pearson. I just wanted to make two brief points, and
it's in line with supportive technologies.
In manufacturing, we consistently improve the process. And
just as freedoms that African-Americans sought made everybody
else freer, in the manufacturing process, when you begin to
improve the process, it improves everyone else's productivity.
The Chairman. Sure.
Mr. Pearson. So that's what's gained when we begin to think
outside the box.
And the other point we talked about earlier is failure.
Well, if you compare--an employer should always compare, and
this is not anecdotal data on my part, it's actual. We've been
more successful with retention with our employees who have been
disabled, and it went back to that earlier point of loyalty.
Turnover is expensive. What is less expensive is retention. And
by focusing on that group of loyal employees and investing in
recruiting, and what is minimal expenses in terms of
accommodation, which is often viewed as a dirty word, is
actually in most instances very inexpensive and goes back to my
first point of everyone begins to share in a productivity
improvement.
The Chairman. Sure.
Now, I'm going to recognize some people. Everybody's got
their cards up. But remember when I started this discussion,
there were two things I wanted to hopefully bring out in this
roundtable discussion. One was sort of the spectrum of
opportunities, the spectrum of getting people into employment.
But the other aspect was career enhancement.
It's one thing to get into a job. The other thing is how do
we build systems so that people can advance in a career, people
with significant disabilities, how they can get a job,
training, opportunities for advancement. How do we work that
in? So that you don't just say, ``OK, we got you a job, and
that's what you're going to do the rest of your life.'' Well,
sometimes people like to try different things, advance, do
different things. What do we need to do to sort of help the
private sector integrated employment so that they have career
opportunities and advancement?
I want you to think about that, and if we can bring that
up. Ms. Moore, you had yours up. Then I'll go to Ms. Petty, Ms.
Pumphrey, Mr. Schroeder, from left to right, and then Mr.
Young.
OK, Ms. Moore.
Ms. Moore. Well, I'd like to go back to what Mr. Young said
about bridging. I think as we look at a more complete
implementation of what we actually know how to do in our field
to include everyone, if we say ``all means all,'' that's not
just an ideological perspective. It's really a commitment.
A piece of that is to say, ``all right, you brought up voc
rehab, what we measure is what we produce.'' So what is it that
we're giving guidance to? What are we enforcing? What are we
measuring? What are the performance outcomes that we actually
expected? Have we set some targeted goals? You talked about the
huge discrepancy, Senator, between the unemployment rates right
now for people who are not perceived to have disabilities and
for people who do, and it's huge. And in order to shift that,
we do have to commit to certain things and begin to divest from
other things.
I would suggest that if we are going to move away from
segregation in a skillful, planful way, we need to commit to
that in measureable ways, planful ways, and we need to have
clear, supportive leadership. We have national policies. We
have laws. We have people's protections under the law in terms
of the ADA, the voc rehab act, under Olmstead, as people have
suggested, but it's not aspirational. This is actually the
policy of the United States.
On the ground where we're doing that, we need to hold
people to it, and I think we have some really good examples.
Nobody is perfect. No system is perfect. We're imperfect
people. But if you look to places like Vermont or Washington
State, where there was sustained leadership with a very clear
policy, a very clear set of measures of what are we moving
toward, and consensus building among all the partners,
including people running sheltered workshops to say we're going
to move toward more customized supported employment, real jobs,
integrated work, meaningful wages, and we are going to move
away from some other models. They didn't dump people in the
street, but now they have roughly twice the positive employment
outcomes of other States because they made that commitment.
There was never a question about a little of this, a little
of that. I mean, one of the reasons we had the Olmstead
decision is because States were a little confused about the
ADA. They thought, all things being equal, a little
segregation, a little integration, great, and that actually
wasn't the law.
We have the same thing in employment.
The Chairman. That's right.
OK, I'm going to go to Ms. Petty, but then I want to skip
to Jonathan Young down at the end to talk about policies that
we need to put in place to increase earnings and advancement in
the workforce.
I'm going to start with Ms. Petty.
Ms. Petty. I wanted to go back and talk a little bit about
the resources. And I did not understand because I see many,
many hundreds of people working in segregated employment, and
that works out to get these huge contracts, and all that money
going into the workshops, I think, can be used to help people
have a job with dignity.
I live in the Wal-Mart capital of the world.
The Chairman. That's right. The chicken capital also.
Ms. Petty. I know that Wal-Mart contracts with some of the
sheltered workshops in our area, and we just want the employers
to change their attitude, as I said earlier. It's about
attitude and thinking that everybody can have a job. So I think
we need to start there, and I wanted to address your career
question.
I think it starts in one area with voc rehab. When I was
going to school, I did not see my vocational rehab counselor. I
didn't even know what that was, so I didn't see them until I
was a senior in high school. And I think we need to start
earlier.
I have two little boys, and people already ask them what do
you want to be when you grow up. I think we need to start
earlier, and you've been talking about the early intervention.
And so that might be able to help shape policy if we can start
working kids earlier and helping them. And, you know, I went to
college, and I changed my major a few times. I really didn't
know what I wanted to be even when I was out of high school.
Thank you, and that's all I have.
The Chairman. All right. Thanks, Ms. Petty.
Jon, OK. I'll just change the focus a little bit here on
career. I think Ms. Petty just kind of put her finger on it
there. She didn't see voc rehab much. Hopefully we're going to
try to change that. But getting people to think about careers
and how they advance, and how do we make sure that people with
disabilities don't just get--it's OK to get a job, but how
about career advancement?
Mr. Young. Thank you, and I think it's a great point that
you start with there, because there may be a tendency to think
of a job as a static moment as opposed to a person's life.
There's a phrase that ``people are policy.'' I think when we
look at the lives that we see people living, it's an expression
of our policies. To have policies that are effective, they need
to be attuned to an entire person's life.
Let me come back to two points. I used the expression
``dignity of risk.'' There's a discussion about reality. I
think we do need to recognize that not everybody has the same
risk threshold, if you will, in terms of how much risk they're
willing to take. So as we look at policy changes, we need to be
mindful of the--informed choice means an informed choice about
the risks given today's environment, and that includes an
environment of very difficult economic circumstances.
As we talk about the difficult economic circumstances,
though, we've got to be mindful that the costs also are not
static. I think we often tend to look at costs in one area and
say, ``oh, well, that's too expensive,'' and you hinted at this
earlier. But by not investing in people in certain respects,
we're risking raising costs significantly otherwise.
We spent billions of dollars on education programs for
people with disabilities. If the endpoint of those education
programs is a lifetime of entitlements without providing as
much opportunity as possible for people to live independently
in communities of their choosing, to be engaged and earn as
much as they can in the setting of their choosing, our
economics are backward.
We need to recognize limited resources, but we can't focus
narrowly on certain investment of costs without paying
attention to what the opportunity costs, if you will, are by
not investing in those. In terms of the policies that we need
to undertake, to me the core piece becomes incentives, and a
few people have talked about this. We need to focus on where we
establish policies and where we invest resources, what
incentives does that create.
You mentioned earlier--a few people have mentioned the role
of internships. I'm proud to say that I had no idea what I
wanted to do in high school and was really a pretty awful
student. I was a wrestler. When I went to college I was going
to be an engineer because math was the easiest thing for me,
and then I worked for Congressman Tony Coelho for a semester
after my freshman year in college, and I'm here today, among
other reasons, because Tony Coelho had me sit in the majority
whip office and attend majority meetings, and I got bitten by
the bug of politics.
A lot of people with disabilities, if you're living on
certain benefits, that prohibits certain amounts of income.
There are many people that go through school and don't get the
chance to have those internships because doing that means they
lose certain things, and those economic resources are important
and valuable.
And if those incentives are aligned away from
participation, that has a cascading effect, because missing
that internship at one point or missing the opportunities
throughout the early periods of schooling are going to make it
harder to have sequential job development.
I know I'm being fairly high-level here, but I think if we
could focus on incentives and figure out where the resources
are that we have to invest because we're going to pay for it if
we don't, but let's invest those resources where the incentives
are aligned with the goals that we all know and agree on,
enshrined in the ADA.
The Chairman. Very good. Thank you.
Mr. Schroeder, I'm going to call on you, Fred, in just a
second here, and then Ms. Pumphrey. But before I do, we've been
joined by Senator Franken, and again, someone who is a great
member of this committee, and also someone who I know is
committed to the goals of the ADA and making sure that we have
the resources that we need, and that we invest those resources
wisely.
Senator Franken, welcome. Thank you for being here, and
I'll recognize you for comments or questions.
Statement of Senator Franken
Senator Franken. I apologize for getting here late. I was
stuck in a Judiciary Executive Committee where we needed to
keep a quorum.
But this is our second hearing on this, and I have just one
basic question. I've been to a sheltered workshop situation
where there seemed to be people working who were severely
disabled and who were really having a good time, I mean really
happy in the work. And then we had a hearing here, and we had a
gentleman who was pretty severely disabled who actually was in
an integrated work environment and spoke incredibly highly of
it. I don't know if you remember, but this is like the biggest
laugh that we've ever gotten since I've been here. He had Down
syndrome, and I asked, I said, ``why do you enjoy it?,'' and he
said, he likes joking around with his supervisor. And I said,
``does your supervisor have a good sense of humor? '' And he
said, he took a pause and he went, ``Is this on the record? ''
[Laughter.]
And he knew exactly what he was doing. So as a former
comedy writer and comedian, I consider a sense of humor to be
maybe the highest form of intelligence.
[Laughter.]
This may have been, in a way, the most intelligent person
ever to testify in my experience thus far.
But my question really is--and I understand the Vermont
example of segueing from a sheltered workshop setting much more
toward integrated. My question really is, is there a place for
sheltered workshops, and are sheltered workshops a better
place, or do you distinguish between severity and nature of the
disability when considering whether there is a place for
sheltered workshops? That's for anyone.
Ms. Moore. I don't know if Fred wants to take that.
The Chairman. Do we need the question repeated, or do you
understand it?
Ms. Moore. I'll do it if you want.
The Chairman. All right. Ms. Moore, you're first up.
Ms. Moore. Well, I think to both address the question of
how do we best advance people's careers and to answer the
question of to what extent does level or type of disability
possibly predispose people to be seen as more appropriate for
sheltered work, I think sheltered workshops have a place
because they're here and because we have so many, hundreds of
thousands of people in sheltered workshops. So no matter what
we decide here, there will be a role for sheltered workshops as
we move forward.
I think that relative to the level, type of disability,
we've really gone way beyond that in terms of our ability to
look at a person, and until we can do this we'll never be able
to figure out the advancement of the career either, because
we're really looking at the contribution the person can make
and then saying what's the negotiated relationship with the----
Senator Franken. Are you saying there's sort of a danger,
when talking about level of disability, of basically
categorizing people and not looking at everyone's individual
capacities?
Ms. Moore. Absolutely. I know one of the first people I
ever got a job for was somebody who had long-term
institutionalization, was deaf and blind, and had developmental
and cognitive disabilities, and she was just not considered
employable based on how she looked in that environment, her
lack of experience, her lack of frame of reference, and people
weren't able to figure out how to communicate with her right
away.
We did a fairly extensive process of coming to really try
lots of things, to what Ms. Neas said, and what we discovered
was there were things that just really did light her up. And
not surprisingly, given her dual sensory impairment, she really
liked manipulating things, putting things together. We ended
up--now, that could have--arguably, people could have said,
``oh, she likes putting things together, let's send her to a
sheltered workshop. She has significant multiple
disabilities.''
But we ended up getting her a job at American Electric Wire
and Cable, building computer cable harnesses that it turns out
you can do--we taught her. By the way, we structured the
environment, did hand over hand. We used systematic instruction
and the assistive technology. That was back in the 1980s, so
we've advanced way beyond that now. But we had to picture her
making a contribution and recognize there was absolutely
nothing that we could provide for her in a segregated setting
that couldn't be provided where that work usually occurs.
I understand that it's not a simple thing to move from
where we've been to where we're going, but I think we have
learned a lot not just about skills but we've also learned that
people can make a contribution that is not just specific to
skills, and I think those of us who have been employers
recognize that.
The Chairman. I hate to jump around here, but Mr. Schroeder
has been trying to get in here for a long time.
Did you want to address yourself to this specific question
that Senator Franken raised, or was there something else, Fred?
Mr. Schroeder. Well, actually, I think it's a good segue
into the whole question about upward mobility, that if a person
is placed in a facility that has a very limited range of
activities, the idea that the person would have a maximum or
even a reasonable opportunity to prepare for upward mobility I
think is questionable.
We issued a rule when I was with the Rehabilitation
Services Administration back in 2001 that ended the practice of
people being placed in sheltered work through the Vocational
Rehabilitation Program. And the reason we did it is because the
essence of public policy, as Jonathan was talking about a few
minutes ago, is aligning your incentives around the activity
that you want to increase, and we believed that sheltered work
did not afford people not only the level of employment that we
believe people could attain given the right supports and
training, but specifically the upward mobility.
Just not to belabor numbers, but one of the things we
looked at was whether people who were employed in sheltered
work, in fact, developed skills that enabled them to leave the
facility and move into integrated work, and our data showed
that fewer than 1 percent left sheltered employment each year
for integrated employment. And so the incentive we felt was not
there.
And if you look at the broader incentive system, there are
hundreds of millions of dollars of noncompetitive Federal
contracts, as well as other types of contracts, that go to
facilities, but there's no particular incentive to maximize the
individual's earnings, there's no incentive built in to move
the person into higher-level employment, there's no incentive
even to have the work be sufficient to be reasonably self-
sustaining; in other words, the hours of work.
If we think about work at its most basic level, there are
people who do volunteer work, of course, but by and large we
equate work with earning enough money to be self-sustaining,
and our data did not see, certainly didn't reflect that
sheltered work was achieving that end. We wanted to press the
system toward integrated work that paid a competitive wage,
that was challenging and interesting to the individual on the
assumption that that's the best platform for people to advance
in employment.
The Chairman. Dr. Schroeder, thank you very much.
Now, let's see, I'm trying to figure out who to go to next.
Ms. Petty, OK, go ahead.
Ms. Petty. I wanted to answer Senator Franken. You said
that the person you met, he liked the sheltered workshop. Is
that right?
Senator Franken. I'm sorry. The person I met where?
Ms. Petty. He liked to be in the sheltered workshop? He
enjoyed it?
Senator Franken. The person who testified here?
Ms. Petty. No. You said you went to a sheltered workshop,
and they were happy, right?
Senator Franken. Oh, right, right. Yeah.
Ms. Petty. Well, my question would be what was it that made
them happy at the sheltered workshop, and why wouldn't they be
able to be happy in the community? Because if I remember right,
we ended segregation many, many years ago. So people with
disabilities, especially intellectual disabilities, is a form
of segregation, and that is not our civil rights. That goes
against our civil rights.
I just wanted to say that. Thank you.
Senator Franken. I think that's a great question. I mean,
my observation was that there are people, a number of people
seem severely cognitively disabled, and that they were really
having a good time, I mean really enjoying their experience,
like laughing a lot. I mean, it was an extremely happy
environment.
It made me feel that the people who had provided or who had
put this together were doing a really good thing, and my
question really was that from my really brief experience there,
that I would say that there was a difference in the level of
disability between the young man who testified who got that
huge laugh and the people that were there. He was working for
Hewlett Packard, and he seemed to be an extremely intelligent,
capable guy from every metric that I could think of, other than
the fact that he had Down syndrome, but he was really smart.
On the other hand, I'm not certainly an expert in this, and
that's what I was really asking. I'm asking from a standpoint
of real ignorance on my part, and humility. But I'm wondering--
just take my question at face value. And your answer is why
wouldn't they be happy also in an integrated situation, and
they probably would be. I think these people, the particular
people I'm thinking of, there were two who sat next to each
other who seemed to be laughing a tremendous amount at each
other's jokes and were having a much better time at their work
than most people have a right to.
[Laughter.]
That was my experience.
The Chairman. They were having a better time than we
usually have here is what you're saying.
Senator Franken. This committee is incredibly enjoyable,
Mr. Chairman.
[Laughter.]
The Chairman. Ms. Pumphrey, could you respond to this?
Because you have a son with very severe and significant
disabilities. You spoke about that earlier. What's your
observation on this?
Ms. Pumphrey. I still maintain that there's a point or a
place in this society for sheltered workshops. That's where my
son is, and I believe that that option needs to be there for
individuals with significant disabilities.
One of the things I would like to see happen to help with
the cost of the services of placing individuals with
significant disabilities in the community is the Consumer
Choice Options program through the Intellectual Disabilities
Waiver allows me to manage his services at a significantly
reduced cost than if I were purchasing his services through an
agency. If I were able to purchase through the Consumer Choice
Option program the supportive employment piece, I could do that
very cheaply and allow him to work in the community doing the
work that he enjoys. Unfortunately, the way that the waiver is
designed, that's not an option at this time.
I would really like to see the Consumer Choice Options
piece of the waiver, those guidelines opened up some.
The Chairman. OK.
Ms. Samuelson.
Ms. Samuelson. To answer Senator Franken's question and
segue it back to your question, which I know you're trying to
get answered, the second one, and I think also to tie into Dr.
Young's point, if you're trying to look to the future and how
to move where you want to go from a public policy standpoint,
then you have to start with people and systems where they are
and figure out how you can make things change.
If you have people who are served in a segregated or a work
center environment, and we do, we have three work center
programs in three of the States that we operate, a very small
percentage of the total number of people that we serve, but
that's where people are. That's either where they've ended up,
or sometimes it serves as a safety net for people who have been
out, and then as their needs change and they're less able to
work, they come back in.
Then how do you begin to develop the incentives and systems
to support moving the bar or creating opportunities without,
again, creating a service cliff that eliminates opportunities
for people because they can't qualify or there aren't enough
resources in the system at the current time to take them where
they need to be?
And to Dr. Schroeder's point about the changed definition
and placement, what we found was that people who might have
gotten into the vocational rehabilitation system and been
served with a broader definition, and then for continuing types
of services in an environment of limited resources instead
don't get into those systems. A very small fraction of the
people that we serve in employment programs, by our definition
of people who have most significant disabilities, are people
who have entered through the vocational rehabilitation system,
and that's not the way that you want it to be if that's meant
to be our primary service driving program to support not only
the initial employment but also the career development for
people with disabilities.
And to the point of what do you do when you have somebody
who is in a less-than-ideal from full inclusion and full
opportunity employment, I think that there are many proven
strategies that can be incented into the systems. I know we do
a lot of what in the workforce investment system would be
called incumbent worker retraining, to help encourage people to
broaden their career interests and move through systems. You've
got assessments, you've got mentorship programs, you've got
internships.
You've got a lot of ways to expose people to alternate
skill and work environments, but you also need to have ways to
do supported transitions when it's a question of risk
management and how much somebody is willing to try, and that
can include some strategies that we've tried, like guaranteeing
service slots for people that are willing to try different
things but still come back, and transportation, which is a huge
issue for people in terms of work environments, and it's a huge
issue--I know we're not talking about Social Security, but it's
a complex issue because there's the whole overlay in terms of
all of the programs and supports that come through some of the
entitlement programs, SSI and SSDI.
I think if we focus on incentives and the things that we
know about what works and how to build those into our delivery
systems without restricting options for people, then we can
start with people where they are and help them find new
opportunities.
The Chairman. Exactly.
Ms. Neas.
Ms. Neas. Senator, I think the two concepts that are really
important here, one is informed choice. Did anybody ever ask
him, what do you want to do?
Senator Franken. I don't know.
Ms. Neas. And that's a factor.
The other is how risk averse or how much are people willing
to take a risk? My experience is the older people are,
sometimes the less willing we are to take a risk, and if this
works for me, then it works for me and please don't change it.
I think we want to have particularly kids coming out of
school thinking that they have more choices than just one
option. On the other hand, I think we don't want to take away a
place for people to earn some income and replace it with
nothing if nothing is the other option.
The Chairman. Anyone else wanted to add something to this
or expound on something? Jonathan? You looked like you were
ready to jump in there on this.
Mr. Young. I was thinking about it, but now I have to move
from thinking to talking.
Let me try to make two brief points, one I think we need to
hold out as an ultimate measure of quality of life. I think
what becomes challenging, then, is determining how do we
measure quality of life, and who measures quality of life, and
to return to earlier themes, ultimately I think each individual
needs to measure their own quality of life.
To measure one's own quality of life, there also needs to
be sufficient awareness of what life opportunities and options
there are. But let me come up on the theme a moment ago about
starting where people are. I'm a pragmatist by philosophical
bent, and so I've always wanted to do things from the ground
up. I think that's a powerful point to begin with.
Whatever we may say about how things are or are not
working, there's a moment that we're at right now. There are
people who are living right now in certain experiences, which
include certain segregated settings, as well as integrated
settings, and I think we need to start from the vantage point
of people's individual lives, what is working or may not be
working, and what more they might learn or what might be made
available to them that could move from a particular place to
another place, including people where the opportunity that
they're in might be satisfactory for the moment but there's a
clear development issue.
If I'm 25 years old and in an entry-level job of some kind,
that's not the end of the story. I mean, you want to look at
development opportunities. At all points of the life spectrum,
whether we're in school or at any point in the employment
spectrum, the dialogue I think needs to begin with trying to
assess the quality of life where one is, and how do we identify
particular strategies that move an individual to a place of
their choosing of greater opportunity.
The Chairman. Got it.
Dr. Schroeder.
Mr. Schroeder. Very briefly, going back to the idea of
incentives, and also the public's conception of disability, I'd
just like to say very clearly that I believe that the sub-
minimum wage system needs to end, and I say that knowing all of
the counter arguments. But we live in a society that assumes
that people with disabilities are less productive, and
therefore the sub-minimum wage system I think perpetuates that
viewpoint.
Second, the sub-minimum wage system removes any incentive
to try to find a better match for the individual. It is a
premise that given the person's disability, he or she will be
less productive, and that assumption then is passed on to the
individual in terms of a sub-minimum wage.
And so I think one very clear thing that would advance the
employment of people with disabilities is to eliminate Section
14(c) of the Fair Labor Standards Act, and that presses our
entire system to explore employment opportunities that are
really capitalizing on the inherent abilities of the people
with whom we work.
The Chairman. Mr. Pearson. And this may be the last comment
because our time has run out. Go ahead, Mr. Pearson.
Mr. Pearson. With that, Senator, there is no substitute for
a solid human resources policy and integration in the
workforce. If you want people to advance, they have to be
evaluated, those records have to be reviewed, and then
opportunities increased for people with disabilities, because
employers will invest in folks who are loyal. They'll invest in
people who have a demonstrated work history of performance, and
integration is key to getting that done.
The Chairman. I agree.
Did you have something you wanted to add?
Senator Franken. No. Thank you all.
The Chairman. It's a great discussion.
Senator Franken. And thank you for addressing my very basic
question. Thank you.
The Chairman. Thank you all very much. I think this has
been a rich discussion, a great roundtable.
I'll make a couple of observations in closing. Since I'm
the chair, I get a closing. I have the gavel, as they say.
I think we touched on some important policy issues, how we
make competitive integrated employment available to all, even
people with the most significant disabilities. We touched
briefly, of course, on the whole issue of 14(c), the sub-
minimum wage issue. It seems to me that the idea of sheltered
workshops, when it was started, was really cutting edge. It was
getting people out of homes, out of institutions and into
workplaces, where they could associate with people, learn skill
sets, do things. It was wonderful. It was really cutting edge.
Of course, I think we've advanced. There were a lot of
things that were cutting edge back sometime, but maybe now
we've moved. Society moves. And so just the whole verbiage of
sheltered workshop, I don't like that. For some reason, it just
gnaws at me. I like the idea of work centers, that type of
thing. But the idea of a sheltered workshop? We've moved beyond
that, Jonathan. We're moving beyond that concept.
The question really, I think, for us is, as I think someone
pointed out, I forget who it was, we have hundreds of thousands
of people now working in these work centers. I'm not going to
call them--I'm going to get rid of that language out of my
lexicon here. These work centers that are there, we have to
recognize the reality of that. But how do we start moving? It's
just like with the ADA. I mean, we knew we couldn't change
everything overnight. It takes years, and sometimes you have
setbacks, like U.S. Supreme Court decisions, and then you work
to overcome those. But it's a steady progress.
How do we now, equipped with more knowledge, better
technology, understanding the economics of the realities--I
mean, we know, we have studies that show that--it was a 2011
study I have here in front of me from Kent State University
that showed that the cost of supportive employment was 40
percent less than those in work centers or sheltered workshops.
So we know that there's some cost effectiveness there.
However, having said that, I think what we're trying to
move toward is where there will be early integration, early
programs, early intervention programs where young kids with
significant disabilities are challenged, where they are
provided opportunities for internships to see where their skill
sets might lie, and the assumption should be that everyone can
be in integrated employment. That should be the basic
assumption, and our goals ought to be moving in that direction,
and that's what we're trying to do, is move in that direction,
recognizing, as I said, the reality that there are hundreds of
thousands of people in work centers right now, and whoever said
that, you might take more risk when you're younger, but when
you're 35 or 40 or 45, and this is what I've been doing, and I
know how to do this, and I feel comfortable there, and I may be
happy there, do we uproot all that? Do we uproot that? I mean,
who am I to try to uproot that?
But it seems to me that we need to make that transition
from the cutting edge of what these workshops were in the
beginning now to a new cutting edge, a cutting edge of
integrated employment and the future for young people in that
setting. I recognize you can't do it overnight, but we ought to
at least be moving in that direction.
While I understand--believe me, nothing upsets me more than
sub-minimum wage. There was this situation in Iowa that really
triggered my thinking in this and said, ``wait a minute, this
is an old concept. We've got to get rid of this.'' And what was
happening there finally brought me to this realization that
there has to be a new regime, a new way of doing things here.
As I said, it's been a rich discussion. Do I have all the
answers right now? I don't. I don't pretend to have all the
answers. But I do believe there's a general consensus, I think
among all the disability groups, that we do want to move more
toward fully integrated employment to the maximum extent
possible, and then recognize that for many, many, many
Americans, their work in the work centers that they've been
doing for many years, that maybe as we move ahead we can't just
disrupt lives inordinately overnight. But we at least have to
start with young people now and give them a new cutting edge.
That's why I appreciated the opportunity here. I look
forward to continued discussions, input from all of you and
from the entire community as we move ahead on this. We'll feel
our way forward. But again, I hope you'll look at what we're
trying to do in the WIA bill, the Workforce Investment Act, to
start to move in this direction, where the default setting is
integrated employment, where the assumption is kids will be
trained by VR and working early on to give them these skill
sets, and I've learned a lot here just in terms of options--
internships and opportunities so people can try different
things. That's got to be part of this also, I think, for voc
rehab.
We're feeling our way forward. But I think we are moving
forward, and I continue to ask for your input in that.
We'll leave the record open for 10 days. Participants may
submit statements or supplements for the record. That includes
all of you or any Senators who were here or couldn't come
because of other committee assignments.
And with that, unless there's something else to be said,
the committee will stand adjourned.
Thank you very much, all of you.
[Additional material follows.]
ADDITIONAL MATERIAL
Prepared Statement of Advancing Employment Connecting People (APSE)
Chairman Harkin, Chairman Enzi and members of the committee, thank
you for the opportunity to submit testimony related to the roundtable.
APSE is a national non-profit membership organization, founded in
1988 as the Association for Persons in Supported Employment, now known
as APSE. APSE is the only national organization with an exclusive focus
on integrated employment and career advancement opportunities for
individuals with disabilities. APSE has chapters in 35 States and the
District of Columbia. Our members come from all 50 States and Puerto
Rico, as well as several foreign countries.
The evidence is extremely clear: people with intellectual and
developmental disabilities can successfully work in the community. For
over 20 years, the Institute for Community Inclusion has tracked
employment outcomes for individuals served by State developmental
disability agencies. According to the most recently available data,
20.3 percent of individuals are served in integrated employment--i.e.,
jobs in the community. After peaking at 25 percent in 2001, this figure
has remained flat since 2004.
This is unacceptable, particularly as you look more closely at this
data and see the massive variation among States. Washington State leads
the Nation at 88 percent, with Oklahoma at 60 percent. Vermont,
Maryland, Louisiana, New Hampshire, and New Mexico are also States that
are well above the national average. This is a highly diverse group of
States, which have proven quite clearly that we can do a lot better
than a 20 percent rate of individuals working in the community.
So what makes the difference? For starters, it requires a clear
vision and commitment to community employment by State leadership,
followed by specific actions that act on this vision. It also requires
within that vision, a culture that employment in the community is a
natural and expected outcome. Absolutely critical is for States to use
their resources, primarily funded by Medicaid, to provide incentives
for and support services that are in line with that vision, and to also
limit or deny funding for service alternatives such as facility-based
services. It also requires a comprehensive approach in terms of
addressing all the various aspects of operating a service system to
ensure that the vision of community employment is supported. This
includes ongoing staff development, with both systems staff and service
providers, so that they not only embrace this vision, but also have the
technical knowledge to implement it.
It also requires addressing a wide range of other issues: service
monitoring and quality assurance, engagement of individuals and
families, the availability of benefits counseling that supports
community employment, transportation, inter-agency collaboration with
public vocational rehabilitation, to name just a few. Strong transition
services from school-to-work, with a clear focus on community
employment are also critical. One area that we have found that is
absolutely vital is the need for a strong data measurement and
monitoring system. It is clear that those States that are closely
monitoring data regarding performance in community employment
consistently achieve better outcomes, proving that old truism ``You
manage what you measure.''
We would urge the Federal Government to require States to have
comprehensive employment data measurement systems for integrated
community employment. This could be accomplished via the authority of
CMS, which provides the vast majority of resources to State
intellectual and developmental disability agencies. Along with all of
these other factors, I should also add that moving forward on community
employment can take significant political will. Many States have well-
funded and politically connected entities, consisting primarily of
service providers interested in maintaining the status quo.
Leaders of State intellectual and developmental disability agencies
must be provided the support to stand up to these interests that are
odds with the public policies of the United States that via the ADA,
Olmstead Decision, IDEA, etc. that clearly state that disability is a
natural part of human experience that in no way diminishes a person's
right to fully participate in all aspects of life--including employment
alongside their fellow non-disabled citizens. It is not acceptable to
use public resources in a way that is in conflict with our national
disability policy.
Prepared Statement of the National Disability Rights Network (NDRN)
the need for new strategies for improving employment for people with
disabilities
As the nonprofit membership organization for the federally mandated
Protection and Advocacy Systems and Client Assistance Programs for
people with disabilities, the National Disability Rights Network (NDRN)
would like to thank Senators Harkin and Enzi and the Senate Committee
on Health, Education, Labor, and Pensions, for their recent attention
to the employment-related needs of people with disabilities. This
hearing and the July 14, 2011, hearing on Strategies for Improving
Employment for People with Disabilities, as well as the March 2, 2011,
hearing on Employment Opportunities for People with Disabilities,
demonstrate a continued commitment to improving the employment
situation for people with disabilities.
People with disabilities continue to face unemployment at a rate
much higher than that of the general population. According to the
Office of Disability Employment Programs, the unemployment rate for
people with disabilities in June 2011 was 16.9 percent, compared with
9.0 percent for persons with no disability. Moreover, over 78 percent
of the non-institutional population with disabilities ages 16 years and
over is not in the labor force at all, meaning that they may have given
up on seeking employment or not be aware of employment services
available.\1\
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\1\ ``Economic News Release,'' Bureau of Labor Statistics, June
2011, available at .
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Many individuals with disabilities are working in segregated
settings for subminimum wage. In its January 2011 report, Segregated &
Exploited: A Call to Action!, NDRN documented the risks of exploitation
and abuse that come with segregated or subminimum wage settings, and
discussed case studies of people with disabilities paid extremely low
wages for years, with little review of the role that vocational
rehabilitation agencies are intended to play in providing services for
people to leave segregated workshops or subminimum wage positions.
Also, there is little monitoring of the requirement that education
agencies take into account each student's preferences or interests when
transitioning people with disabilities from education into the
workplace, or that vocational rehabilitation agencies have a role in
this transition. The report is available at http://www.ndrn.org/images/
Documents/ Resources/Publications/Reports/Segregated-and-Exploited.pdf.
Segregated employment and work at subminimum wages limit the
ability of people with disabilities to become independent, self-
sufficient members of the community. Almost all employment options
within segregated workshops are unskilled, low-wage jobs with few, if
any, benefits, and few opportunities for advancement. Consistent
isolation of people with disabilities from people without disabilities
can hinder the proper development of socialization skills and self-
esteem. As the disability community has long understood, integration
leads to increased satisfaction with their living and working
arrangements and increased overall happiness, as well as improved
adaptive behavior skills. Segregated workshops provide little, if any,
benefit for people with disabilities, and the Federal Government should
end Medicaid and other Federal funding of these programs.
NDRN supports the increased use of supported and customized
employment as a way to enhance the ability of people with disabilities
to work in an integrated and competitive setting, based on an
``employment first'' model. In such a model, vocational rehabilitation
agencies and education officials working on transitioning of people
with disabilities into employment focus first on finding the person an
appropriate job, and then finding the services and supports necessary
to make that employment a reality. Customized employment means
individualizing the relationship between employees and employers in a
way that meets the needs of both, based both on the strengths and
interests of the employee and on the needs of the employer. A
customized job may differ from the employer's standard job
descriptions, but is based on actual tasks that are found in the
workplace and meet the unmet needs of the employer. It may include
employment through job carving, self-employment, or entrepreneurial
initiatives.
Examples of the successful use of customized employment services to
successfully provide competitive employment to people with
disabilities, at competitive wages, exist throughout the country. The
Georgia Advocacy Office (the Georgia Protection and Advocacy agency)
has worked with vocational rehabilitation agencies and employers to
develop demonstrations of successful customized employment for people
with disabilities. The State of Washington has also developed a
supported employment program, and has established customized employment
services as the primary use of day program and employment funds within
the State.
The Federal Government should, based on these and other examples,
enact policies that support and encourage the spread of customized
employment. Congress should work with the Department of Labor to ensure
that vocational rehabilitation agencies have an active role in
providing customized employment services to people with disabilities.
Specifically, the term ``most significant disabilities'' should be
federally defined and monitored to ensure that vocational
rehabilitation agencies provide priority services to people with the
most significant disabilities first, as required by law. The Federal
Schedule A program should also be a tool to provide customized
employment for people with disabilities, with some changes to better
implement the program in a way that supports customized employment.
Although Theodore Roosevelt proclaimed in his State of the Union
Address on December 3, 1907, that ``the National government should be a
model employer,'' Federal employment of people with disabilities
continues to decline. Executive orders and goals are helpful, but are
more effective if there are specific mandates and Federal agencies are
held responsible for complying with directives. Statistics from the
Equal Employment Opportunity Commission (EEOC) show that individuals
with a disability in the Federal Government come into employment at a
lower grade than non-disabled peers and experience little career
advancement. Hiring and supervisory staff must understand the
capabilities of each person with a disability and offer a full range of
mentoring opportunities and support in order to assure career growth
and advancement.
NDRN is happy to continue working with the HELP Committee to
improve employment services for people with disabilities and support
greater transition to competitive, integrated employment, with the
eventual goal of ending sub-minimum wage and sheltered workshops.
Prepared Statement of the National Industries for the Severely
Handicapped (NISH)
Mr. Chairman, Ranking Member, and members of the committee, thank
you for the opportunity to submit this statement for the record for the
September 15, 2011 roundtable on The Future of Employment for People
with the Most Significant Disabilities.
As the committee reviews strategies to identify the right spectrum
of employment options to address the needs of workers with the most
significant disabilities, NISH shares the committee's objectives to
increase earnings over time and promote career goals. NISH and the
AbilityOne Program are proud of our strong record of accomplishments in
providing employment with opportunities for upward mobility to tens of
thousands of Americans. For our employees--and their friends and family
members--the AbilityOne Program plays a vital, irreplaceable role in
their lives.
The AbilityOne Program employs more than 47,000 Americans who are
blind or have significant disabilities through government purchases of
products and services provided by nonprofit agencies throughout the
Nation. In 2010, NISH/AbilityOne nonprofit agencies employed 42,500
employees who earned an average hourly wage of $11.23. Participation in
the AbilityOne Program further enabled these agencies to employ an
additional 81,500 individuals with significant disabilities outside of
the Program.
NISH/AbilityOne jobs are most often located in community-based,
integrated settings including Federal buildings and military
installations throughout our country. Additionally, a majority of these
jobs provide wages that are generally higher than those found within
the local communities and include health and other benefits. Employment
through the AbilityOne Program empowers and encourages self-
determination by enabling people with significant disabilities to make
informed choices about key aspects of their employment. Nonprofit
agencies affiliated with the AbilityOne Program utilize multiple
employment options beyond the Program including customized employment
and supported employment to provide work to people with the most
significant disabilities.
It is also important to note that people with significant
disabilities have a broad range of options with regard to their
employment in the AbilityOne Program. These choices include competitive
integrated employment, supported employment, and community group
employment. The individual's desirable employment outcome should be
selected through the informed choice of the individual with
disabilities based on their unique talents, abilities, and interests,
and not by others. NISH believes that we should continue to work
collaboratively to ensure that a full range of employment options
remains available for people with significant disabilities.
We take great pride in knowing that employment opportunities
created through the AbilityOne Program have increased substantially
over the last two decades. During this same time period, employment for
people with significant disabilities in the commercial sector has
remained flat or decreased slightly, while employment for people with
significant disabilities in the Federal Government still remains too
low. AbilityOne has thus provided an increasingly critical source of
employment for individuals with significant disabilities at a time when
alternative options have been diminishing or disappearing.
Together, AbilityOne and NISH have crafted dynamic strategic plans
to address growing employment needs of our community. These plans
include tactics that leverage state-of-the-art technologies and
cutting-edge rehabilitation support services aimed at promoting upward
mobility and independent community living goals for people with
significant disabilities.
As an example, Marlon Wilkins of northern Virginia found a career
through the AbilityOne Program. Mr. Wilkins has restricted mobility and
partial paralysis from Transverse Myelitis. Thanks to the AbilityOne
Program, Mr. Wilkins began his career at Linden Resources, Inc. as a
document clerk working on the GSA Office of Transportation Audits
contract. Within a few years he was promoted, eventually landing a
supervisory role on the GSA contract. As supervisor, Mr. Wilkins was
given responsibility for managing 300,000 billing documents and
supporting information from approximately 730 Federal reporting
activities each month. In 2008, he was promoted to assistant project
manager on Linden's AbilityOne Bureau of Alcohol, Tobacco and Firearms
(ATF) project. Under his leadership, the team maintained a 99 percent
accuracy rate despite a backlog that occurred during a move that
relocated the project to a new site. For Mr. Wilkins, not to mention
his employers and coworkers, the mission of the AbilityOne Program has
been a factor to achieving success and he recently stated the
following:
``The program has offered various opportunities for personal
growth. It's helped me advance to a project manager on one of
Linden's largest contracts. I think the key to my success has
been my drive, determination and most of all the managers I've
worked with in the past and present. They have helped me
improve my managerial skills. Without them giving me the
opportunity for success, I wouldn't be where I am today.''
NISH looks forward to continuing to work with Congress, the
Administration, and the disability community to find solutions through
a variety of strategies to the unacceptably low rate of employment for
people with significant disabilities.
Thank you for considering our statement. Please feel free to
contact John Kelly, Director of Government Affairs at [email protected]
or (571) 226-4691 if you have any questions.
Supplemental Statement of ServiceSource
I appreciate the opportunity given to us by the U.S. Senate
Committee on Health, Education, Labor, and Pensions (HELP) to give
supplemental testimony in response to this important issue regarding
employment for people with the most significant disabilities. The
mission of ServiceSource is to provide exceptional services to
individuals with disabilities through innovative and valued employment,
training, habilitation, housing and support services. The not-for-
profit corporation has regional offices and programs in nine States and
the District of Columbia, annually providing job training and support
services to over 13,000 people with disabilities annually.
ServiceSource operates a broad variety of employment and
habilitation services, including job placement, group supported
employment, center-based employment and community-based habilitation.
As a leader in the disability field, ServiceSource develops strategic
partnerships with community businesses, government entities and non-
profit leaders to help bridge the gaps for individuals with
disabilities and create sustainable opportunities that benefit the
entire community and result in greater independence for the individual.
What follows is a personal life story from Mark Hall,
ServiceSource, executive vice president, Corporate Development. A
former business development and government relations manager within the
California and northern Virginia aerospace industry, Mark re-directed
his career 14 years ago when he joined our team here at ServiceSource.
Mark and his wife Kathy have two children, including James, a 21-year-
old son who has been diagnosed with Down syndrome. Mark tells the story
of how he and his family have undergone an evolutionary process of
understanding that all people with disabilities deserve the opportunity
to be provided options in terms of employment and support. On the
following pages, Mark offers his hopes for his son, James, to obtain a
quality employment outcome and a satisfying, meaningful life.
James Hall and a Life Moving Forward--Including a Life History
from His Dad!
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
My name is Mark Hall and my wife Kathy and I are the parents of two
children, James and Elizabeth. James, the older of the two, was born in
1989 in southern California and was immediately diagnosed with Down
syndrome. To say the least, that diagnosis was an immediate life-
changing experience as neither Kathy nor I had any previous life
experience with anyone with a significant disability.
For the past 14 years, I have been an executive with ServiceSource
of Alexandria, VA. ServiceSource is a nonprofit community
rehabilitation program that today serves over 13,000 people with
disabilities in nine States and the District of Columbia. I am
responsible for business and program development for the organization,
to enhance rehabilitation programs and develop new employment
opportunities for people with disabilities.
Although James and his disability were new to us when he was born,
we knew we had to quickly get smart about Down syndrome. Both Kathy and
I consider ourselves well-educated as we share three Masters Degrees
between us. We knew right away that we would have to do our best to
learn about treatments and therapies for our son. Soon after James was
diagnosed, we began reading and attending conferences to learn more
about Down syndrome. One early conference was a life-saver for James as
we learned that all babies with Down syndrome should undergo a heart
echocardiogram. James' pediatrician didn't believe that James had a
heart condition that warranted this procedure, but he agreed to write a
prescription when we insisted. The echocardiogram revealed that James
had a significant heart defect that required open heart surgery before
his first birthday. We learned early on that we held a new
responsibility of advocating for James in his life.
Our family moved to Virginia in 1991 when the decline of the
southern California aerospace industry necessitated that I apply my
business development capabilities in new markets outside of national
defense. I was able to stay with my employer and move into a new
position that involved business development and government relations
for nuclear waste disposal and automated finger identification--a
significant change from my defense background. An added benefit of that
move meant that Kathy was able to leave the workforce and devote her
time to being a mother and a homemaker to our two children.
As an infant with Down syndrome in Fairfax County, James was
provided very high-quality intervention services through the school
system. Although he experienced significant delays in speech, mobility
and eating skills, he was a happy and loving child. A highlight for him
was learning to swim when he was 2 years old, a milestone that occurred
before he could walk on his own. Today, one of James' favorite
activities is swimming laps and jumping off the diving board.
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Looking back, we were fortunate that James received his early
intervention services at our neighborhood elementary school and over
time we grew comfortable with the setting and the school staff. Because
of his delays, we made the decision to hold back James from
kindergarten until he was 6 years old. During his preschool years, by
attending several conferences, we also learned about and became
enthusiastic supporters of full inclusion for children with
disabilities in our schools.
As Kathy and I discussed kindergarten placement with the school
system for James, it rapidly became apparent that if left to the school
administrators, James would not be programmed into our neighborhood
school, but instead would be bussed to another elementary school 5
miles from our home. His placement would be a segregated special
education classroom with other children with intellectual disabilities.
This was the recommendation despite the broad range of special
education services that were provided to children with learning
disabilities at our neighborhood school. Both Kathy and I stood firm
that James could and would receive special education services in an
inclusive environment in our neighborhood school. He believed that it
was his right to ride the school bus along with Elizabeth and other
children on our block.
To support that goal, and over a period of almost 2 years, we
worked together with other parents and advocates in Fairfax County to
promote more inclusive schools. We formed a parent advocacy group,
Neighborhood School Now, and immediately our group sought community and
media attention. We met with senior school officials and lobbied the
school board. We were enthusiastic and vocal in our advocacy. Ever so
slowly we made progress and we began to see the school system move
toward more inclusion on a child-by-child basis.
James' elementary school placement was in question until the Friday
before the 1995 Labor Day weekend. Finally, that Thursday, the local
community newspaper ran its weekly edition with a front-page story on
James and our family and our desire for him to attend his neighborhood
school. The article was well-researched and the reporter compellingly
presented our case. That Friday morning after the newspaper story was
published, I received a phone call from the principal at our
neighborhood school and she told me that James would be welcome to
attend her school the following Tuesday, the first day of the new
school year. As far as we know, James Hall was the first child
diagnosed with Down syndrome to be fully included in Fairfax County's
school system.
That first school day began a period where James was fully included
with his peers without disabilities at our neighborhood school. He rode
the bus to school with his sister and other neighborhood children--even
though he continued to be offered special education transportation
every year. He received support services in the classroom and only left
class for additional speech and occupational therapy. Although there
were some bumps along the road, James thrived in elementary school and
had a very positive experience. He learned to read at the second-grade
level and participated at an appropriate level in most of the
curriculum. Besides school, James was active at our church and rose to
the rank of Webelo in the Cub Scouts as a fully included member of his
den and pack.
Also during that period of time, in addition to my activities with
Neighborhood Schools Now, I was nominated by the ServiceSource Chairman
of the Board and my supervisor at my regular employer to join the
ServiceSource Board of Directors. In 1996, I was nominated and selected
for the Brookings Congressional Fellowship program that resulted in a
9-month fellowship with Senate Majority Leader Trent Lott. By being in
the right place at the right time, I volunteered to be assigned to the
bipartisan team that was working on the reauthorization of the
Individuals with Disabilities Act (IDEA) that was eventually signed
into law in 1997. The opportunity for me to make a very small
contribution to the passage of that legislation while meeting others
with a commitment and passion for assisting people with disabilities
was an experience that made me realize that I wanted to do something
more with my life than worry about the future of nuclear waste
disposal. After concluding my congressional fellowship and much to my
employer's chagrin, I approached Janet Samuelson, president and CEO of
ServiceSource, and suggested that she add me to her team to help with
the organization's marketing effort. She agreed, offered me a job and I
joined the ServiceSource staff in late 1997 and I have never regretted
the move.
On the home front, James progressed through elementary school
without any major incidents or problems; we overcame the minor issues
he faced with good planning and hard work. James did very well in
elementary school, and some might say that he was a model student for
full inclusion.
However, when James finished elementary school and began his middle
school and high school years, his educational experience grew more
difficult. His transition to our neighborhood middle school was very
traumatic and caused James a great deal of stress. James began acting
out in the classroom and stopped talking both at home and at school. We
witnessed a large increase in a variety of compulsive behaviors and
routines, and James stopped eating at the table with the family during
mealtimes. Although he had sometimes done this earlier, he greatly
escalated tossing and throwing nearby items when put into environments
or transitions he did not understand. He regressed in his life skills
and he obviously was not a happy young man. Eventually Kathy and I
recognized that these issues were not getting better through behavior
modification and other strategies, so we began seeing Dr. George Capone
at the Kennedy Krieger Institute located at Johns Hopkins in Baltimore,
Maryland.
All attempts to have James fully included ceased in fall of 2005
when James began attending Chantilly High School. The school offered a
traditional segregated special education program and although
philosophically was not our first choice for James, he responded well
and after his first year, he found a routine and began to settle down.
Also while at high school, he has had the opportunity to participate in
a variety of work experiences including working at a hotel laundry, a
computer recycling facility, a thrift store and some mail delivery
work. He has enjoyed each of those experiences.
Since he was 18, James has been receiving SSDI payments. The local
community service board has identified him as Medicaid waiver eligible.
In general, he has no comprehension of money and it is not a motivator
for him, so wage rates (including minimum wage) are not an issue as
Kathy and I are committed to meeting his needs. He is non-verbal and
often exhibits inappropriate behaviors including throwing items when he
is faced with a disappointment or experiences rapid change. James also
requires coaching to complete life's basic tasks including personal
hygiene, eating and getting dressed.
Today, James is 21 years old and is a nice young man with a wry
sense of humor. He is now in his last year in the Fairfax County school
system, where he has been receiving services since he was 2 years old.
Over the past few years and as part of his school curriculum, he has
been receiving transition planning services. James' sister, Elizabeth,
is a 20-year-old Junior at the College of William and Mary and she
helps keep track of James too. For the foreseeable future, Kathy and I
expect James to live with us at our home.
Our family is thinking about James' future and we are hopeful that
he can be served by ServiceSource as he moves into adulthood.
As James has grown into becoming a young man, both Kathy and I have
modified our thoughts and feelings about full inclusion for him as we
realize his level of ability and what he wants in his own life. We are
very interested in James becoming a contributing adult and that he
continues to develop a feeling of accomplishment and self worth.
However, as James' parents, we are mindful that James will require a
high degree of ongoing supports in order for him to work and live. For
the future, we are hopeful that James can develop a lifestyle that
brings him happiness, safety and a sense of well-being. As James' legal
guardians, Kathy and I are seeking an employment outcome for him that
will keep James positively occupied and provide him with a fulfilling
life. At this point in time, we anticipate that James will not be
competitively employable, and that he will need continued ongoing
supports to function as an adult.
I fully realize that my thoughts about inclusion have evolved from
my thinking when James was entering kindergarten. Whereas, I once was a
loud and perhaps obnoxious proponent for full inclusion, I am now more
moderate in my thinking. I recognize that inclusion and competitive
community employment may not be the best outcome for all individuals
with disabilities--some people require a greater level and more
intensive support to succeed. As Kathy and I work together with James
and the many people that provide him with support, we are mindful that
it is best to have a broad range of options to consider. Those options
for James might include center-based or day habilitation services as
well as group-supported or community-based employment.
As all parents of children with disabilities are prone to do, we
worry about James' long-term future when we are gone. We do have hope
that James will continue to grow in his skill development and will find
an employment outcome that will provide him with a sense of safety and
well-being. We are excited about the changing world for people with
disabilities. Almost every day we learn about new opportunities and
accomplishments for people with disabilities. We are confident that
over time, James will have a variety of opportunities for him to
experience a happy and productive life. We love James and are very
grateful that he is part of our lives.
Prepared Statement of Laura Walling, Director, Advocacy and Legislative
Affairs, Goodwill Industries International
Mr. Chairman, Ranking Member, and members of the committee, on
behalf of Goodwill Industries International, Inc., I appreciate this
opportunity to submit a written statement for the record on the
important issue of the future of employment of people with significant
disabilities. Goodwill Industries applauds the committee for its
interest and leadership in examining this topic. Goodwill believes
that work is a valued activity that allows people to participate in the
mainstream of life. Sadly, job opportunities for people with
significant disabilities are limited, and they would be even more
limited if not for special provisions provided in Federal law and
center-based programs.
Goodwill Industries is comprised of 158 independent, community-
based Goodwill agencies in the United States. Goodwill's network of
local agencies provided employment training, job placement services and
other community services to nearly 2.5 million people last year. Over
240,000 of those individuals reported to have a disabling condition. In
addition, 170,000 people obtained meaningful employment as a result of
Goodwill career services programs. Collectively, these employees earned
$2.7 billion in salaries and wages and contribute to their communities
as productive, taxpaying citizens.
Goodwill agencies help to fund programs by selling donated clothes
and other household items at more than 2,500 donated goods retail
stores and online at shopgoodwill.com. Many people with disabilities
work in Goodwill stores. In addition, Goodwill agencies employ people
with disabilities and other employment challenges in the delivery of a
wide variety of quality commercial services that are contracted to
community partners, business, and government. People employed by
Goodwill contracting services work in industries including customer
relations, administrative support, document management, office
administration, packaging and assembly, food service preparation,
custodial services, and groundskeeping.
Over 75 community-based Goodwill agencies collectively engage more
than 7,000 individuals with disabilities to fulfill more than 350
AbilityOne contracts, while offering those workers job coaching and
additional skills training. The AbilityOne program is the largest
provider of employment opportunities for those who are either blind or
have significant disabilities, employing approximately 46,000 people
through more than 600 nonprofit agencies.
The workforce development services provided to people with
disabilities include: intake/eligibility; work assessment/evaluation;
job readiness/soft-skills training/work adjustment; occupational skills
training; on-the-job training (both inside and outside of Goodwill);
intensive placement services sessions; supported employment; and e-
learning among others.
employment options
During the discussion, Chairman Harkin asked the panel, ``What is
the right spectrum of employment options that will address the needs of
workers with the most significant disabilities? '' Goodwill believes
that all individuals should have the choice to work in the employment
setting that they desire and that no one should be denied the
opportunity to work and receive the intangible benefits of work--
independence, participation in society, dignity, self-esteem, and sense
of accomplishment among others. When considering the full range of
options for individuals, center-based employment should not be viewed
as a place of last resort. For some individuals, center-based
employment may be an appropriate option that they and their guardians
should be allowed to consider.
employment strategies
A second topic raised by Chairman Harkin pertained to employment
strategies. Specifically the panel was asked, ``What are the most
effective and proven strategies to help workers achieve the highest pay
and advance in their careers? '' With congressional leadership,
Goodwill Industries believes that we can and must move forward to
eliminate the barriers that prevent people with disabilities from
participating in the workforce. In addition to exposing individuals to
all of the employment options before them, strong relationships with
employers are important to achieve the goal of increasing the number of
people with significant disabilities in the workforce. The autonomous,
community-based structure of Goodwill Industries allows for agencies to
have strong relationships with local employers, resulting in increased
opportunities for individuals served to find a job and advance in
careers.
Goodwill Industries has put forth specific recommendations in the
past related to increased oversight and enforcement of the Fair Labor
Standards Act and the great need to reauthorize the Workforce
Investment Act. As producers within the AbilityOne program, many
Goodwill agencies have been early adopters of the AbilityOne Quality
Work Environment (QWE) initiative. QWE is, ``a strategy through which
key stakeholders in the AbilityOne Program will collaborate to identify
and implement best practices in the [nonprofit] work environments that
will enable people who are blind or have significant disabilities to
achieve their maximum employment potential through opportunities to do
the work of their choice; a strategy to empower AbilityOne producing
NPAs to make improvements in key areas of the work environment, thus
strengthening experience, productivity, and opportunity for all.
conclusion
Thank you for your continued leadership on this issue. We look
forward to working with Congress to consider legislative changes that
will increase employment opportunities for people with disabilities.
______
September 25, 2011.
Senator Tom Harkin,
731 Hart Senate Building,
Washington, DC 20510.
Dear Senator Harkin, I would like to thank you for the opportunity
to participate in your roundtable discussion on September 15, 2011
regarding employment for persons with severe disabilities.
As you recall I am a parent of a young man who has severe
intellectual disabilities. When Josh was young, our goal for him was to
live in his own home and to work in our community. Three and a half
years ago, Josh moved into his own home with 24 hour support through
the Intellectual Disability Title IX waiver program. He accesses the
Consumer Choice Option program that allows me to manage his services,
thus allowing a great deal of flexibility for his services. Josh is
having a great deal of success and he is very happy and content with
his life. Josh spends his days at Tenco, our local sheltered workshop
and he participates in the day habilitation program. Due to the level
of supervision that Josh requires, he is not able to work even at the
sheltered workshop. Almost a year ago, I was able to convince his team
to allow me to hire someone through the Consumer Choice Options program
to allow Josh to work a few hours per week while at Tenco. He shreds
paper with the assistance of his one-on-one staff person. Without an
increase in his budget, he can only work a few hours per week. The few
hours that Josh does work, means a great deal to him and as a result,
his behaviors have improved and he is less anxious and more content.
Josh is only able to work as a result of the flexibility that is
allowed through the Consumer Choice Option program and adding to his
budget would allow him the opportunity to work additional hours.
My goal has always been for Josh to work in our community and I
would love to see that happen. I have always been told that Josh is not
eligible for supported employment services as he would need the service
long term. I just don't see how my goal of Josh working in our
community can ever happen due to the level of supervision that he
requires. In our community those individuals who do participate in
supported employment services are generally only able to work 4 to 6
hours per week. Josh spends 30 hours per week at Tenco and he is
surrounded by friends and a good support team. He would not be happy
only having something to do 4 to 6 hours per week.
Until Supported Employment service guidelines are changed and
become more flexible, sheltered workshop programs need to remain in
place to allow individuals with severe intellectual disabilities to be
involved in a program that allows them activities to occupy their day.
Again, thank you for the opportunity to be a part of your
roundtable discussion. It was a once in a life time opportunity for a
long term advocate and I thoroughly enjoyed the experience.
Best Regards,
Deb Pumphrey,
Parent Advocate, Ottumwa, IA.
______
Consortium of Citizens with Disabilities Employment
and
Training Task Force,
September 29, 2011.
Hon. Tom Harkin, Chairman,
Health, Education, Labor, and Pensions Committee,
U.S. Senate,
Washington, DC 20510.
Hon. Mike Enzi, Ranking Member,
Health, Education, Labor, and Pensions Committee,
U.S. Senate,
Washington, DC 20510.
Dear Senators Harkin and Enzi: On behalf of the Consortium of
Citizens with Disabilities Employment and Training Task Force, we
appreciate your sponsorship of the September 15, 2011 roundtable on The
Future of Employment for People with the Most Significant Disabilities.
The Consortium of Citizens with Disabilities is a coalition of more
than 130 national disability-related organizations working together to
advocate for national public policy that ensures full equality, self-
determination, independence, empowerment, integration and inclusion of
children and adults with disabilities in all aspects of society.
Because the record for submission of comments was only recently
opened to the general public beyond the roundtable participants, we
have not had time to produce comments specifically tailored to the
particular issues addressed on September 15. However, our task force
was asked to testify before the House Ways and Means Social Security
and Human Resources Subcommittees on September 23d on Social Security
disability program work disincentives. We believe that the
recommendations provided in that testimony may be of use to your
committee and attach it with this cover email for your information.
The CCD Employment and Training Task Force believes that meaningful
employment represents one of the best opportunities for people with
disabilities as they work toward becoming a productive and independent
member in their community. To that end, we applaud your continued
efforts to address the deplorable state of workforce participation
among Americans with disabilities.
Our task force believes that employment of individuals with
disabilities requires a comprehensive approach that addresses all
aspects of the service system to ensure that the vision of integrated,
competitive employment is fostered and promoted. Ongoing staff
development, among systems staff and service providers, is vital so
that they not only embrace this vision, but also have the technical
knowledge to implement it. A holistic approach also requires addressing
a wide range of other issues: outreach to and engagement with
employers, service monitoring and quality assurance, engagement of
individuals and families, the availability of benefits counseling that
supports community employment, transportation, inter-agency
collaboration with public vocational rehabilitation, to name just a
few. Strong transition services from school-to-work, with a clear focus
on community employment are also critical.
Our specific recommendations pertain to urgently needed renewals of
several critical work incentives programs and improvements that can be
made to the Ticket to Work and Work Incentives Improvement Act
(TTWWIIA). While we recognize that much of TTWWIIA falls within the
jurisdiction of another committee, we also know that you understand the
necessity for breaking down the unnecessary silos that exist in
Washington that create impediments to true progress in advancing
employment of people with disabilities.
We are also concerned about maintaining and enhancing the health
care coverage that has been provided to thousands of working people
with disabilities through the Medicaid Buy-Ins, extension of premium
free Medicare and provisions of the Affordable Health Care Act (ACA).
The development of regulations implementing the health exchanges and
essential benefits packages under the ACA could determine whether
progress made to date is advanced or undermined and we urge your
attention to this critical piece of the disability work incentives
puzzle.
If the HELP Committee is truly committed to removing barriers to
work for people with significant disabilities, then it must move
Congress to address those impediments that continue in Social Security
Title II and Title XVI programs. Social Security disability
beneficiaries continue to grapple with the complexities of the benefit
system, with the fear of sudden termination of benefits without an easy
return to the rolls if their condition necessitates that, and with
outmoded asset and income disregards that dampen initiative and punish
success.
Finally, there are disability tax credits and deductions that need
to be modernized and business tax incentives that must be renewed if
people with disabilities are to enter the mainstream of the American
labor force. As Congress turns its attention to reform of the tax code,
we urge you not to forget changes that can aid the employment of people
with disabilities.
We thank you for your attention to these comments and welcome the
opportunity to support your committee in its efforts to advance
economic self-sufficiency for Americans with disabilities.
Cheryl Bates-Harris,
Co-chair, NDRN.
Alicia Epstein,
Co-chair, NISH.
Susan Goodman,
Co-chair, APSE and National Down Syndrome Congress.
Charlie Harles,
Co-chair, International Association of Business, Industry and
Rehabilitation.
Susan Prokop,
Co-chair, Paralyzed Veterans of America.
Paul Seifert,
Co-chair, Council of State Administrators for Vocational
Rehabilitation.
[Whereupon, at 12:10 p.m., the hearing was adjourned.]