| Dan Linneman: I
would like to welcome you to the National Transition July
audio conference. This month's presentation is entitled
IEPs and Transition: Hear it from the Students! My
name is Dan Linneman, and I am a professor of special
education at the University of Illinois at Urbana
Champaign. I work with the National Transition Alliance,
and I am located at The Transition Research Institute.
Today we are honored to have some experts in the field
of transition from school to adult life. In fact, when we
began planning this audio conference, we wanted to use
the word “experts” in the title instead of
students. But I was afraid that if you saw that you would
think, “Oh, business as usual. Adults talking about
what students ought to do.” But today isn't about
business as usual. We have some scholars from DO-IT, a
project located at the University of Washington. They are
our experts.
We spend a lot of time thinking about transition,
identifying best practices, funding them, implementing
them, and so on. But our experts today are the consumers
who ultimately hold us accountable.
At this time it is my pleasure to introduce Dr. Sheryl
Burgstahler, DO-IT's director, who will, in turn,
introduce our panel of experts. Sheryl?
Sheryl Burgstahler: Thanks for
inviting us here. I am the director of DO-IT. DO-IT
stands for Disabilities, Opportunities, Internetworking
and Technology. DO-IT began in 1992, and we were first
funded by the National Science Foundation to increase the
successful participation of people with disabilities in
science, mathematics, engineering, and technology
careers. We use technology as an empowering tool and have
a focus on transition from high school to college and
employment. We also include work-based learning
experiences along the way. Now we receive funding from
the State of Washington, the U.S. Department of
Education, and many other sources.
Today we have five participants who are DO-IT
Scholars, one of the DO-IT programs funded by the
National Science Foundation and the State of Washington.
In addition to other activities, they have been involved
in several summer programs where we focus on college and
career transition. As we speak, they are participating as
interns in a work-based learning opportunity that we have
here on campus, helping with program operations and
mentoring our younger Scholars. We have high school
students living in the dorms learning about college life
and technology. Today, you are going to hear from
students who have succeeded in the program and are now
working for us as interns. They may sound a little tired
because we are giving them lots of work to do.
These students are the experts. They will tell you
about how they were included or not included in their
transition experiences from high school to college to
work. They will share with us what helped and what did
not help. Our first expert is David.
David Benedict: Hi, my name is David
Benedict. I am a sophomore at Eastern Washington
University. My high school memory of my IP chairman was
that I had a meeting with him once a semester. It wasn't
much else. As far as the accommodation I received, I did
most of the work on my own. I talked to my teachers
beforehand about my disabilities and asked for the
accommodations I needed. When I got to college it was
quite a bit different. Every quarter I get a letter from
my DSS office that I handed out to my professor about my
disability and they have helped a lot with preparing my
professors and getting accommodations from my professors
for my disabilities.
Trent Marshall: I am Trent Marshall.
I had two really helpful teachers in high school that
were IEP teachers, and they were trying to drive me into
the IEP meetings every chance they got. I guess I was
just sitting back listening to what my mom, my dad, and
the teachers were talking about. They would ask me a
question to get me involved. And I thought this was very
good because they just would not let me sit back and let
them take over, or take over my responsibilities. I
needed to learn how to be more independent. The teachers
were friendly, but they could also push me just the right
amount at the times I needed it.
Mike Neil: I am from Denver,
Colorado, and just graduated from Denver University High
School. I am eighteen.
For me, the successful transition to school and work
came primarily from my parents. I think that they
fostered a sense of expectation that I would go on to
college. It was never really that much of a question. I
had so many people going on to college around me that it
was never something that I was worried that I could not
do. I think part of it is also that, even though some
people with disabilities have family that do encourage
them to go to college, they fear that they cannot control
their own environment. And one of the reasons I am lucky
in that respect is that I got hooked into technology very
early. For example, I have been working up the ladder,
and I just got myself an environmental control system
that is voice-activated. And that has been really a
helpful item. I got my first computer from my original
IEP and that is probably the most successful thing that
series of meetings produced. I have not had an IEP in ten
years.
So, on that front, it was not as helpful as it could
have been, nor was my school, since our high school had a
counselor that was simply a guidance counselor. And she
was young and new and simply inexperienced, not just
toward me, but towards the entire school, which was
really small. We had a lot of interaction with the
teachers, so she did not need to do much anyway.
But from the parental standpoint, it really stands
out. I was taught that someone would have to prove to me
that I could not be doing something for me to believe it.
It's rarely been shown that I can't do something. So,
from a positive mental attitude standpoint, I think you
have to go in and face life with an attitude that you can
do everything until you are shown otherwise. And that I
think comes from parents, friends, and from just being a
self-actualized person. So I think that is my main advice
and my main lesson.
Amanda Johnson: Hello. My name is
Amanda Johnson. I am eighteen. I just graduated from high
school and am in a wheelchair. Throughout my education, I
have had an IEP. I have had an IEP ever since I began
school in kindergarten. And mainly, in high school, it
has been altered a bit. My IEP team would meet every
year, but quite often the things written into the plan
would not be accomplished, so it would have to be written
down the next year also. And when my transition from high
school to college arrived, my parents helped me make the
change. The transition from high school to college went
smoothly. Right now I'm in college. I mainly have no
concerns about my collegiate experience.
Laura Walizer: Hello, I am Laura
Walizer. I am eighteen, and I will be a freshman at
Hendricks College in the fall. In general, my high school
years were a little bit hard. It was my mom, me, and my
guidance counselor versus the school administration.
Every year we would look at the schedule and see what
would need to be changed because I have a little bit of a
mobility impairment. We would present the assistant
principals with changes we were going to need them to
make. And they were always unapproachable and would wait
until the end and hold out as long as possible before
actually making the accommodations. That guidance
counselor was the one who worked with my mom and me the
most. She would be on our side. She would always be along
side us, and she had the power and connections to get
some of the things done that we needed done. Whenever my
mom and I were frustrated, she was always there to talk
to.
And I think that the way high school went helped
prepare me for college. If I ever run into a situation
where it is tough to get accommodations, I will know how
to handle it and won't just back down. I think that will
be very, very valuable as I go on in life.
Sheryl Burgstahler: You have heard
the bad news and the good news. I've been taking notes to
summarize what our panelists have had to say.
First, the needs of each student were different, and
the process of transition is an ongoing process, one that
needs to be reevaluated at various steps along the way.
We've heard that it is important to involve students at
every one of those steps. It is helpful to the transition
process to be conscious of transferring parental
responsibilities to the students as they move from high
school to college, careers, and adult life.
Promoting self advocacy is very important. It is
important to have a plan and, more importantly, to follow
through with the plan.
And, finally, don't make assumptions about what the
students can or can't do. Remember at all times that they
are the experts or at least they are becoming the experts
about their interests, about where they are going in this
life, and about their disabilities.
Are there any questions?
Janis Chadsey: Yeah, this is Janis
Chadsey with the National Transition Alliance. Trent, I
had a question for you. You talked about how your
teachers were so helpful during your IEP meeting and that
they would not let you just sit there, but they would
want to make sure that you were involved and
participating. Do you think there are things that we
could do with students that would better prepare them
before they even entered into the IEP meeting so they
would feel more comfortable about participating? It is
one thing while you are in the meeting, for questions to
be directed to you, but I am wondering if there would be
some things that we could do prior to the meeting that
might be helpful before the meeting even took place.
Would it be helpful to talk about what goes on in
meetings, do some role playing, or help students to ask
questions so they feel comfortable with it? I don't know
about you, but maybe, for some students, it is a little
bit scary to have to go into a meeting with a whole bunch
of adults who are supposedly experts. Is there some way
of helping students to feel more comfortable?
Trent Marshall: You can try to
improve their public speaking so that they are more
confident. Maybe that would be helpful. To me, that has
never been a problem.
Janis Chadsey: I see. Not for you,
anyway. So, no one had to really do anything to help you
practice?
Trent Marshall: No, but I am thinking
that could possibly work. I don't know.
Janis Chadsey: Thank you. Do any of
the other students on the line have an idea about that or
if they ever worked with anybody prior to these meetings?
David Benedict: I have some opinions
on IEP. I saw my IEP person once a year and, after that,
I did not see him until the next year when we did the IEP
again. So, one of the other things that you might look
into is having monthly meetings with the IEP persons. Or
you could try to get to the teachers more involved in
this if the student is mainstreamed.
Also, I notice that they always managed to schedule
the meetings during times that we had tests or projects
that we would do in class, so you might also want to
double check with the teacher to make sure that there is
not something really important going on in the class that
day.
Janis Chadsey: Yes. That is a good
idea.
I have another question. Laura, I was interested in
your comments. One of the things I am very interested in
studying here at the University is people's social skills
and their social behavior. I thought it was interesting
when you said that one of the things that you had learned
was to persevere and to not give up or back down when
obstacles are in your way when trying to get
accommodations and other things accomplished. But there
are different ways of doing that. You can persevere and
do it in such a way that you are kind of aggressive or
annoying, or you can persevere and do it in a way that is
still pleasant. You seemed to have learned a lot from
your guidance counselor. What type of approach did she
take? Or what is the approach that you are going to take
when you go to college?
Laura Walizer: We would be polite
about it, but we would tell them what we needed and wait
a few days. If it did not look like that was going to be
effective, we would say we still needed it to be done.
Then we would be quiet about it and give them a chance to
do what they needed to do.
Janis Chadsey: So the main thing is
just not to give up.
Laura Walizer: Yes.
David Benedict: What I remember from
my last IEP almost ten years ago is that you certainly
start out being polite. But, in my case, the principal
was so unmoved that we had to escalate sometimes, and the
only way my mom and I finally got it to work was to bring
in the local legal center for disabilities. That worked
instantly. It is an aggressive move, but I think it
proves necessary sometimes to have the law really in
there with you.
Janis Chadsey: Yeah, I think just in
personal examples that I have been associated with that
often that has been what it has taken in order for things
to occur, which is really too bad.
David Benedict: Yeah, but I think
people need to get used to bringing in authority and not
being stopped by doing that if that is what it's going to
take to get their needs met.
Janis Chadsey: Sure. I think it is
ridiculous that we have to resort to that. But you are
right. Oftentimes that is the only way that things will
get done.
Amanda Johnson: Hello. This is Amanda
Johnson again. I went from seventh grade to high school
with my principal. In eighth grade, my parents and I had
a meeting with my IEP team to discuss which high school I
would attend. My home high school was not accessible to
wheelchairs. My parents met with the school board since
they had the final say about whether an elevator was
installed. They said no, and my parents and I filed a
complaint with the Montana Human Rights Commission. Last
August, they ruled in favor and the school district
appealed it to the District Court. The school did install
the elevator last November.
So, I found that you should try to be nice at first,
but when that does not work, get legal help.
Janis Chadsey: All right.
Laura Walizer: Hi. This is Laura
again. There might actually be an idea that you might
want to try even before you go to a legal center. We went
to our superintendent of schools. We just went over the
heads of the school administration when it became
necessary and that was simply magical. Michael's solution
was the one that got things done a lot faster. I do
remember that.
Janis Chadsey: Well, now, that is an
interesting idea. I had not thought about that.
Laura Walizer: One thing we never
did, but, in retrospect, we could have tried, was to have
the superintendent of schools attend the IEP meeting if
there was really a problem with something at school. You
have them just sitting there silently watching, ready to
step in if there is a problem. That is one thing to do.
Amanda Johnson: In my experience, the
superintendent was involved from eighth grade on and the
special ed. coordinator was also involved. That way,
there were people of authority attending my IEP meetings.
However, it did not have that much of an effect since the
board had the final control of the elevator issue.
Sheryl Burgstahler: I would like to
make one comment about including the students in their
IEP process. One thing that we have found helpful in the
DO-IT project is to encourage students to invite DO-IT
staff to their IEP meetings for Scholars that are in
Washington State. Most of the people here today are
outside of our state. But, those who are local can invite
us to their IEP meetings. It is really an interesting
dynamic when we arrive. When one of our staff members
arrives at an IEP meeting for one of our students, the
other people in the group are usually very suspicious.
They think we are lawyers or something.
But we just come and share and support the student.
And I think it has been a very positive experience, and
it sends a very strong message that the student with the
disability should feel welcome to invite people to be in
the meeting. And that is probably the best outcome of all
in that process. But I think that one thing that the rest
of you could do if you are involved in that process is
sit down with the student and ask them who they would
like to have in that meeting and then respect that wish.
Any more questions?
Janis Chadsey: I have one more
question. As I recall, many of you have just graduated
and are on your way to college next year. You talked a
lot about the kinds of things that had happened in high
school. But I was wondering how you were feeling about
going to college, and whether or not there were people in
place at the college who had been identified to provide
you with support or to help you if you need any services
in any way.
Sheryl Burgstahler: Two of our
students have been in college, and then three of them are
going on to college this fall. Several of them do have
comments about this. We will start with David.
David Benedict: I found the DSS
office at Eastern really helpful for getting
accommodations at the school. They were right there,
located at the school. If I had any problems, I could
simply walk into the DSS office, and normally the
counselor was not there, but I left a post-it on her
desk. They were also a lot more helpful about doing
accommodations. As I mentioned before, the letters for my
professors told them what my disability was and what
accommodations I was requesting. And I never had any
problems in getting accommodations from the DSS office. I
talked to some professors. They also were right there
when I was getting books on tapes. One of my books was so
new that they did not have it in the main library, so
they taped it on site for me and that was nice. And also
they kept calling and checking up on me and making sure
that everything in class is all right.
Laura Walizer: I would like to say,
because I will be a freshman this fall, we have been
working with several people at Hendricks College, and it
is such a wonderful change from my experience at high
school. They literally said that they were ready and
willing to do anything that is necessary to work with
whatever accommodations I need: to make sure that the
walks are accessible and that doors are ramped or have
automatic openers.
This is such a wonderful attitude, and I think part of
the thing that helps is that we choose our college. We
crossed off the list of our choices any colleges that
have a poor attitude toward accommodations. I think that
eventually we'll have a lot less pressure than in high
school. It should be nice.
David Benedict: I am going to South
Seattle Community College and I found that if they won't
do the services of a full university, I have been hopeful
that I will get extra time for tests or assignments that
we are doing in class. And sometimes they are not there,
but I will get back to them later and they just are more
than willing to talk to whoever you need to in order to
get it done.
Mike Neil: Hi. This is Mike Neil. In
one sense, I think I am in – on the face of it
— a worse position in terms of my college. I am
going to Colorado College in the fall, and it does not
really have a DSS office. However, I think that it more
than makes up for it in the willingness of the professors
and the physical plant to immediately and effectively
remove barriers. And it really helps also that class
sizes are never going to be over twenty-five. So, a very
personal relationship with the teacher can be developed.
And in that sense you can really get a lot changed much
more quickly than in a large school.
Amanda Johnson: I am attending the
University of Great Falls in Montana and it is a very
small private college. When I first applied there, I
talked to one of their admission counselors, and he gave
me a tour of the campus. And then later on, I also was
seen by an occupational therapist, and he wrote them a
letter about accommodations that have to be made or that
would be helpful, and they have made nearly all of them,
except for the ones that require an elevator or
something. And one of my classes that I am taking is on
the second floor, and they have already made arrangements
to move it down to the first floor for the time that I
will be taking it.
Sheryl Burgstahler: Do we have
anymore questions?
Janis Chadsey: No. I am really struck
by how accommodating all of the colleges have been for
all of you in contrast to your experiences in high
school. I was also struck, Laura, by what you had said
regarding getting to choose the college that you are
interested in. And, of course, you are going to pick the
one where they seem to be willing and supportive and
helpful. In contrast, with high school, especially if you
are in a small town, you don't really get much choice. It
is really something for me to think about.
Sheryl Burgstahler: One thing that we
are very much involved with in the DO-IT program in
working with young people as they transition to college
is helping them make good choices.
The American with Disabilities Act requires that the
campuses be accessible, but certainly some are more
accommodating than others.
Janis Chadsey: Absolutely.
Sheryl Burgstahler: And so we
encourage them to choose their battles. Some students are
ready to go in and face a war situation and actually
enjoy helping a campus become more accessible for
students with disabilities; others do not. And so I think
it is very important that the student get good guidance
from adults in their life so that they know that each
campus is different. They need to find one that matches
their academic interests and their career interests, but
also is comfortable for them.
Janis Chadsey: Right.
Dan Linneman: How many DO-IT Scholars
have played a leadership role at the colleges or other
schools, like being on advisory boards or councils, to
help the colleges formulate policy regarding how they
treat individuals with disabilities?
Sheryl Burgstahler: We don't have a
firm number for you, but students in the DO-IT program
have done many of these things. There have been over one
hundred and fifty Scholars to date. We do have some other
programs, too. But in this particular program, the
students, once they have been in three summer programs
and move on to colleges, are encouraged to continue
participating in the program as DO-IT Ambassadors. And
they do a couple of things: first, they are to take some
leadership positions in their community, in their
churches, and in their colleges to make a difference for
other people with disabilities. Secondly, they mentor the
younger Scholars in our program. The students that you
have met today are now sharing their expertise with the
younger Scholars, in person this week and throughout the
year via electronic mail. We have an electronic
discussion list where we encourage them to help the
younger kids who are still in high school benefit from
what they have learned in the process of transitioning to
adulthood.
Dan Linneman: That sounds wonderful.
Are you keeping track of the Ambassadors and others once
they leave DO-IT?
Sheryl Burgstahler: Yes, we do. We
have contact with our students year-round, but we even
have what we call our “October One Report” to
document what everyone is doing on October 1 of each
year. We know where each student is and how they are
doing, and collect anecdotal information about their
achievements and activities, including the work-based
learning experiences that they have had along the way.
Dan Linneman: Wonderful. I am
thinking back to when I was at the end of my high school
career and getting ready to go to college and I think
there was an assumption that my parents had that I would
wind up in college. I don't know if I owned that. There
wasn't too much planning there on my part. When I think
back on it, it's almost like I might have been derailed
fairly easily just by all the distractions of
adolescence.
You sound like you each had to fight the system the
whole way. What I am curious about is, how do you
maintain the energy to do that? In my work as an
advocate, I've talked with families a lot and some of
them get kind of depressed and angry about “the
system.” What kind of resources, personal or other,
kept you alive and fighting?
Sheryl Burgstahler: We have a few who
are going to make comments on that, and I'll just say,
speaking for the whole DO-IT group, I often hear comments
about the importance of accepting the fact that life is
not fair. This is an ongoing process and having a sense
of humor helps.
David Benedict: One of our Scholars
from a few years ago had a quote that said, “Life is
sticky, but it certainly is one heck of a ride.” I
agree with that.
One of the reasons that I keep citing it is that, for
all intents and purposes, my teacher gave up on trying to
teach me anything. So, what that says to me is that it
gave me a purpose. I was going to succeed, for nothing
else than just to prove her wrong. And, after awhile, it
got to the point where I stopped trying to prove her
wrong and started to prove to myself that I could do it
no matter what the world or anybody else wanted to throw
at me. I'll eventually graduate college and go on to get
a Ph.D.
Trent Marshall: Personally, I think
that it's not fair to assume anything about a person with
a disability. Having a disability doesn't mean they can't
do stuff like everyone else. I've known some people that
can do some amazing things and so you have to never give
up. It's just one of the lessons that you have to learn.
Mike Neil: I've always gone by the
personal philosophy that “To be is to do.” And
so if you are not doing something and are not actively
participating in your own life, you are simply not being.
You are not part of your own life, and that's probably
the worse thing that can happen to you. So that's what
keeps me going. To do otherwise would be to deny one's
own existence. That's my theory on the matter.
Dan Linneman: Michael, what are you
going to major in when you go to college?
Mike Neil: Actually I'm looking at
history and philosophy.
Dan Linneman: I was getting that
picture.
Amanda Johnson: I am happy to say
that my family helped me get to where I am now. They
stood behind me. I also have a core of friends who helped
me cope through the difficult times.
Laura Walizer: I was raised to be
optimistic and pretty self-confident, which I think is
extremely important for a child with a disability. It's
also an important concept for teachers and counselors to
promote because they have very much to do with the
raising of children. For a teacher or a counselor to
encourage a kid to grow up to be optimistic and
self-confident is a great help to them when they run into
trials, a teacher who is not that way, or an
uncooperative administration, or when they just have a
hard life, like you sometimes do.
Janis Chadsey: You all sound very
mature in your responses. I'm fifty and I don't really
have many friends who actually sound as mature as you.
That's terrific.
Mike, you told us what you were going to major in and
so I'm curious about what each of you want to study when
you go to college or what you are currently studying
right now.
Laura Walizer: I am going to major
either in biology or physics.
Amanda Johnson: I plan to major in
communication. Here is David.
David Benedict: I'm planning on
majoring in microbiology at Eastern Washington
University.
Trent Marshall: I'm not sure what my
major is going to be, but I know it's going to be
something in the computer field. I'm not sure exactly
what. Here is Sheryl.
Sheryl Burgstahler: I haven't decided
what I'm going to be when I grow up. I'm still working on
it, but I think there are a lot of good ideas around this
table I might pick up on.
David Benedict: Absolutely.
Dan Linneman: Okay. Does anyone have
any more questions or comments from our experts?
Tom Grayson: I have one question
regarding assistive technology. We have been hearing in
the past year or so that assistive technology is very
important and has made great strides in helping a variety
of individuals with disabilities. I am wondering if any
of our experts have any insight into that or any personal
experience regarding assistive technology.
Sheryl Burgstahler: Michael uses the
most assistive technology in this particular group, so we
will let him respond to that question.
Mike Neil: I currently am using both
an environmental control system that controls about six
appliances, and I also have voice recognition software so
I can type as I speak. And I have a wheelchair in
addition. All if those are terribly invaluable. I've been
training with the first two since I just got them very
recently. I can already see that they are going to allow
me to do a lot more things a lot easier.
Janis Chadsey: What's the name of
your voice recognition software?
Mike Neil: Dragon Naturally Speaking.
Janis Chadsey: Thanks.
Dan Linneman: Sheryl, do you have any
concluding comments?
Sheryl Burgstahler: I'm never at a
loss for words.
Since we have been talking about technology, I'll just
mention that in the DO-IT program, at every step of the
way, we use technology as an empowering tool for people
with disabilities. And, we look for three things—
- We want to maximize our students' independence in
academics and careers;
- We want to maximize their productivity so they
can compete with their peers; and
- We want to maximize their participation so they
are not left out of activities both in school and
in careers.
As you can tell from this panel, we also have a strong
focus on transition from high school to college, from
high school to careers, and from undergraduate to
graduate school. We are always looking for opportunities
to help young people make those transitions, make them
successfully, and keep their sights high.
One of the programs that we have that helps empower
students with disabilities is the DO-IT Scholars program.
You were introduced to that program a little bit today.
But we also have two other programs where we work with
young people. One is our DO-IT Campers program. In this
program, we go to summer camps for young people with
disabilities that are sponsored by other organizations
such as Easter Seals and the Muscular Dystrophy
Association. In those camps, we implement some of the
transition exercises and Internet exercises that we do in
the DO-IT Scholars program.
We also have a very active electronic
“virtual” community of kids that are not
necessarily in the Scholars program. We call this the
DO-IT Pals program. So, if any of you know of young
people who have disabilities and can gain access to the
Internet, we would like to invite them to join our DO-IT
Pals community where they can communicate with not only
these bright Scholars but also a group of about one
hundred mentors. Our mentors are adults who are in
college or are practicing careers, with disabilities
themselves. If you would like further information, please
contact us at doit@u.washington.edu.
We would love to hear from you. We have a lot of material
we would be happy to share.
Dan Linneman: Okay. I want to say a
very personal thank you to David, Trent, Michael, Amanda,
and Laura, and to you, Sheryl, for inviting them to talk
with us today.
Janis Chadsey: Thank you.
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