Greatra Mayana

Career & Employment Opportunities

Part 10: Preparing for Transition: – CVI Considerations During the Transition Process


My name’s Tracy Evans
Luiselli, I’m with the New England Consortium for
Deafblind Technical Assistance, and I’ve been asked to chat
with you today regarding transition CVI. And I have to tell you,
this is sort of a 360 for me, because I came out of the world
of early intervention and early childhood,
that’s what my doctorate’s in, and that’s where my heart
and soul sort of started. And now I’ve really sort of come
to the other end of this piece. More related to my job
and what those requirements are, but I’ve learned a lot about,
along the way, of thinking about children
and students that I started out with
that were very young, and where are they today,
as it relates to being in those teen years
or the adult world. So, I just want to give you
a little example of a fellow that I met
about three years ago. His name was Adam. He doesn’t live in Massachusetts
but it’s the state that has Storyland,
so you can figure it out. (laughter) And I was called with…
my consultant from New Hampshire called me, Christy Martin,
she said, “I really need your help.” And I said, “What’s going on?” And she said,
“I got a referral on a kiddo, “he’s due to turn 21
in three months, “and they want you come in
and they want a consultation regarding transition
and what they need to be doing.” I thought, oh God,
so drove up to Storyland, and went into this school. The classroom was as far back
in this high school as it possibly could be,
and I saw most of the adults in the class either sitting
around and chit chatting with each other,
or they were kind of off and about and doing
certain tasks, you know, on the computer or whatever. A lot of the students
didn’t have any materials in front of them,
weren’t engaged in anything really meaningful. So we went through
all the records and basically here was a kiddo… so picture,
from my perspective, here is a man. He is a young man,
he is soon to turn 21. He’s in a wheelchair,
I believe his issue was related to meningitis
around age three. He has his head completely down, his arms are sort of
contracted upwards, and he has hearing aids. So the first thing I said was,
“Let me see his IEP,” and I’m kind of flipping through
these different kind of… what they called objectives. And the next question
I said was, “Where’s his teacher
of the visually impaired?” And the response was, “He hasn’t had one
for the last seven years.” (audience reacts) That’s what I did. It was one of those sort of cold
New England days as I drove home, and I’m
calling my ed consultant saying, “Christine, this is like,
this is the biggest nightmare. This is exactly
what we don’t do for kids.” So picture this individual
for the last six or seven years, in a wheelchair,
and the primary diagnosis was cortical visual impairment,
and he has had no intervention. And also picture the fact
that for the first three years of his life,
he had normal vision. So perhaps there was a window
that we could have tagged on to and grasped on to
and held on to to bring his vision
much further, but at this point in his life,
he really had no reason to look. So he’s home now, he’s living
with his mom and dad. Occasionally he goes out to
different activities with them, but in terms of where
he could have gone, it’s this… You know, I was talking
to Barry, we have these cases
where these kids or young adults or adults in your head
that stay with you. That this individual has stayed
with me for a very long time. So, I’d like to again
show you a couple of stories before I jump into this. This is… for those of you
who want a little more dabbling in CVI,
I encourage you to look at West Virginia
Deafblind Project. They have a really nice website with different aspects
of CVI on there. This is a case of a fellow,
Dustin, and he brings up to me
a whole sort of notion of the more I know, the more
I realize what I don’t know. And so Dustin’s background is
that he has a diagnosis… He’s 17 years old, he has
a diagnosis of high myopia and CVI, as a result of
intercranial brain hemorrhage shortly after birth. Associated seizures and
hydrocephalus. Now, most of us don’t like
to be videotaped, okay? So, I’m not saying that the
conversation this individual had is 110 percent appropriate,
but I watched this over and over and over again. As I was observing this
particular student, first I kept thinking to myself,
“He can tell us what he sees.” I work with many children,
they can’t tell us that. …person is walking
with Dustin and he’s going through this entire…
he’s on campus, and he’s going through
this entire sort of narrative of what he sees. So she’s asking him
to tell her what he’s seeing. Now, what he did see
at the beginning is most of the time he has his head down
when he’s talking to her, but she has to cue him,
“Tell me what you see.” He isn’t automatically going
to look up and do that. So he’s able to tell her, “I see
the playground to my left.” As he starts approaching
the sidewalk intersection here, he’s able to tell her,
“I’m at an intersection.” She says, “What do you see
way off in the distance?” And he says, “I see a bus.” There’s a yellow bus,
way off in the distance. Okay… What he does is he describes
as he’s moving along, everything on his left side. He doesn’t describe anything
on his right side. So for me, when I think
about Dustin and transition, I think, he’s being assessed
and he’s getting instruction in a familiar environment, okay? When you have
these individuals– again, move to adult services– they’re getting a whole
vast array of unfamiliar environments. They get… no one’s really
gone in and sort of tested them and checked it out. So, again, she stops him
at this point and asks him, “Tell me what you just did,
where did you notice things?” And he kept saying,
“Left, left, left,” and then he said,
“You’re correct, I didn’t see anything
on my right.” So just an example
of how it’s really easy for individuals who are
in these whole host of different environments
in schools and classrooms, but yet we would really forget
to take them out of that realm. So, I wanted
to bring your attention, as we talk about transition,
to the Massachusetts Department of Elementary and Secondary Ed
Advisory on Transition. The advisory states,
“The ultimate goal “of all professional endeavors
in special education is to prepare students
with disables for adult life.” So again it’s the ultimate goal
of all professional endeavors in special education, yet
it’s the last thing we focus on. It’s the end of the journey. And I know to some of you
I’m preaching to the choir, but it just has really…
when I read this statement, I thought we really aren’t
putting the resources that we need to
into this population. When I look at
our deafblind census, about 240 kids in Massachusetts, half of that population
is the age 14 to 21. And I would say that most
state agencies do not get involved with those kids
until they’re often 19, 20, or just about ready to leave. Again, looking at the
federal mandate around IDEA, transition should be a set
of coordinated activities with a results oriented process,
set to facilitate a student’s movement from school
to post-school activities. So this means that
for every student, the transition planning process
needs to be done in a purposeful, scheduled,
and organized way to ensure an individualized,
meaningful learning experience. And I guess… The lesson for me on this
is that to do transition, to facilitate successful
transition for young adults, takes time, it costs money,
and there are basic ingredients that have to be put in place. And it isn’t something
that can be done quickly. When we look
at the top predictors for successful transition
from school to employment for youth with disabilities,
here are some of the top predictors
of success, and they kind of surprise me
a little bit. Obviously, employment training
and working experiences in high school,
and that work experience piece can be holding a real job
or it can be doing pre-vocational activities. So it really sort of
hits the gamut. And then our last bullet here
is high parental expectations. So for many of the students
that I work with, many of the parents don’t have
those high expectations. They don’t even know
what to dream for. And then when we look
at significant variables that impact successful
transition for youth, we look again at early
and recent work experiences, completion
of a post-secondary program. Now that could be
also a summer experience after they’ve graduated, an experience at HKNC. It could be a training at the
Carroll Center in the summer. So it doesn’t have to be
that they go on to college, but there needs to be something,
again, to supplement post school. The top impediments
to successful transition are difficulty
with transportation– we see that across the board– lack of independent
travel skills, or navigation
or negotiation skills, as Meg and I
were chatting about, and also issues related
to social skills. We talked a little bit
about this whole transition team piece,
but I just wanted to kind of outline thinking
about students that have CVI. We’ve been doing a lot of work
with parents around the person centered
planning process. How many people are familiar
with person centered planning? Okay, so some of you are not. So, in general, it involves
sitting down with the parents at the beginning
and really asking the parent, “Where are your dreams
for your child?” “Where do you want to see
your child in the future?” “What would… what would
the picture look like “if you were to envision
your young adult and being happy and contented
and engaged meaningfully?” So you take that information
and it should drive that transition planning process
in the classroom. I would suggest
that it’s important to use the CVI parent interview
to add to that information. So that it’s clear what parents
are perceiving related to their child’s vision. And, you know,
I think that really looking at the parent interview,
I think it’s really given a great deal of rich information regarding the child’s
background, the history, and the performance. Much of that information
again can be used to drive that transition plan. Now the classroom teacher,
I know it varies from classroom to classroom,
district to district, school to school, but we really
want to look at teachers implementing those strategies
but making sure that the adaptations
are in place relative to those
CVI characteristics. Now I just want to mention, we’ve talked
about characteristics, CVI characteristics,
for two days now. Christine Roman reports
that there are ten of them that she’s based on her work,
and, for me, it’s really informed me
around intervention. But, again, the more I know,
the more I realize I don’t know. Maybe some day there’ll be
14 CVI characteristics. Or 22, I don’t know. But for me, when I look
at intervention, I’m focused on those ten
at the moment. So the vision teacher,
we really want to make sure that that vision teacher’s
involved in the team around transition. Obviously has knowledge
in terms of ocular issues, but I would submit
that if you’re going to use the CVI range, and it is
referred to as the CVI range– it’s not the Roman scale,
it’s not the Roman range, it’s the CVI range–
Christine Roman, 2007. Don’t kill the messenger. It’s really important
that as TVIs or individuals in the field using that tool, that you are trained
appropriately. You should at least be able
to have strong inter-rater reliability
that the child is at least in phase one, phase two,
phase three. And I will tell you,
I see people all the time, I will swear the child may be
a three or four in the range, and I see people scoring seven,
eight, and nine. That tells me there’s a problem. People are using that tool
inappropriately. So, obviously,
the vision teacher’s gonna work on direct service, consultation,
really kind of look at that whole piece
as it relates to transition. And then I see folks like
you all at the MCB, to really look at eligibility
and availability resources, but also really hit home
for families, or at least be aware
that families are struggling with moving from mandated
services into adult world that’s very, very different
when it comes to those supports. So, the transition team. I know you all have heard
a little bit about all the team process
and collaboration. I struggle with this a lot
and I feel, as educators, and often
as human service folks, we are not trained
in good consultation skills. We don’t know how to deal
with conflict or disagreements in opinion. We don’t know how
to support one another. We tend to all be sort of
off on our own, so I really feel,
if folks can think about contributing to the process,
but then also relying on others. Those are really
the two big characteristics around collaboration. So, when we’re thinking about a
successful transition plan, these are sort of the check offs
that you want to think about as you’re planning
for transition. That there’s a vision
for the future, often developed within the person centered
planning process. Parents and key players
are involved so that MCB and MCDHH are at the table
as early as possible. I know you all have really
strained case loads and I can’t tell you
how appreciative I am of the time and resources
that Commissioner Saner and MCB has put forth
for this training today, but you folks know
what happens beyond 21. You’ve got that realm
that you can bring to that transition experience
and to that team, and your voice is really,
really important, and a huge support for families. The other thing is, again, thinking about documenting
the individual’s information. So it might be
a vocational profile that’s done or a portfolio. You’re looking
at information related to transition assessment, to
schoolwork, living, and leisure. We already talked
about assistive technology. Whenever possible,
infusing choice making in that student’s life as it
relates to self determination. Connecting
to the general ed curriculum, and expanded core curriculum,
transportation needs, and environmental assessment
and career exploration. So, when you think about all
these, this is just a schematic. I’m not gonna obviously like
glaze everybody over with this, but as you think
about those key aspects of what makes
a transition successful, think about where you can
help that team think about the CVI characteristics
and where those adaptations need to be made. So they make already done
with school, but what’s gonna happen
when that individual’s gonna go to a living situation? Okay? So as you go through these,
you can look at… the asterisks indicate that’s where you really
look at the aspects around the characteristics. Sharedwork.org. Are any of you familiar
with that site? No, okay, Sharedwork.org
is a federal project. There’s a lot coming out. I would encourage folks
to take a look at all that information online. There’s probably going to be
some CVI information in there pretty soon as it relates
to transition. We’ve modified some
of the CVI pieces in Connecticut and we’re adapting that
for Massachusetts. I hope to have that done
by the end of December. And I’ll make sure
that that’s disseminated to MCB folks. So let me see if I can… I’m afraid to touch
anything right now. MAN: Tracy? TRACY: Yes? MAN: Are you going to address
the summary of performance…? TRACY: The transition planning
form? MAN: Well, it’s like fairly
recent in the whole history of the transition,
but it’s the idea that school district
is accountable for why all these years
of special ed… In other words,
it’s until fairly recently, the only thing that we got… So now the district
has to prepare a summary of what the student
can actually do, so I think that can put pressure
on the district to address something
beyond core subject areas. TRACY: And I’ll show an example,
too, of the just… discuss briefly
the transition planning form that DESE requires starting
at the age of 14. And think if information
is in that form early, I think you’ll see a lot more
continuity between the ages of 14 to 21, rather than
all of a sudden, boom, the summary hits it from 21. Ellen? WOMAN: (inaudible) did a great
webinar just talking about, you know,
the transition isn’t at 14, it should start as soon
as the child is born, because if you don’t
have a goal, especially with the more
complex kids, and know where you want to go, then every year
is wasted, really. You really have to know where…
what’s available, what’s out there to go to,
and be thinking about this long before 14,
long before 14. TRACY: Absolutely,
and that’s why I think that person centered planning,
you know, it’s just interesting, because that process came about
so many years ago, and it’s really fallen
off the horizon, and the only thing
I can think of that it’s a money issue
and a time issue and people don’t want
to take the time to really sit down
and engage parents in a discussion and to look at
what supports are available in a community and ask
that question of where… here’s the student today, where
are they gonna be in the future? So… This is a transition timeline
that was developed… oops, I’m sorry,
does somebody have a question? Go ahead. MAN: Yeah, just wanted to…
what was just said. Sometimes we found at MCB
vocational counselors more than willing to come
to the table but the parents
and/or the student don’t want to hear the necessary referrals,
or what services are required, what skills are required. It isn’t always that we don’t
have the time or ability to go to the table, but it is
that a lot of the students are sheltered in school
are being protected, and when you try to explain
those skills that you mentioned early on in the discussion
that are important to survive in the real world,
they don’t want to hear it. TRACY: Yeah, I’m… certainly
those circumstances happen, but I might come back and say,
perhaps if we had involved those parents earlier and they had stronger
advocacy skills and had a better understanding
of their child, they may feel more engaged
in the system. I know it works both ways,
and there are cases where you’ll see parents
that are highly engaged, highly motivated
and really take on and embrace the whole notion,
kind of moving forward, and are excited
about new horizons, and there are other families
that want absolutely no part of it. And, yeah, I would definitely
say that that’s an issue. But, it’s interesting for me,
I keep going back to… Some of you may know a fellow,
Mark Dunning, who’s a dad and he does
an incredible amount of work in the area of Usher syndrome. His daughter Bella has Ushers. And Mark has this unbelievable
way of kind of conveying what a lot of parents think
and worry about and he… he always answers the question,
“What do parents want?” What do most parents want
for their child as they grow and they mature,
what kind of drives them? And his response was just
this one simple word: hope. They want to know
that their child is going to be safe and happy
and well cared for and living a meaningful life,
and that’s just… You know, I do think it’s
unfortunate when we see families like that because I feel like
something happened along the way, whether
they lost trust with someone, and then when you see them
at that transition age, they’re angry often,
they’re negative, they can’t envision any kind of
positive future for their child. And I feel like something’s
not right with that, because that’s part of our job, to kind of help them move
along that journey. So… That’s just
my soapbox for the day. This is a timeline that we use
around transition for our support services
that we give to teens and to families and to agencies. So we really encourage again
looking at that age 12 to 14, so I’ve gone through
and just highlighted– again, we don’t have enough time
this afternoon– But I’ve just highlighted
those areas where you’re gonna think
about what’s going on related to CVI assessment
and the characteristics. So, connecting a personal
learning profile checklist. You want to make sure you have
information in there about the child’s
visual abilities and relative
to the characteristics as well. Designing individualized
employment for students. Thinking about,
how would you arrange or modify that environment
so that individual can be more independent? So all along this continuum,
you’ll see just different areas. Revisiting the person centered
planning, goals on IEP, transition planning specific. Being really specific
about what those adaptations and modifications are. Okay… So… This is just an example of
looking at the characteristics, and thinking about the areas
of home, school, work, community,
social interactions. I would argue, this is…
we have to get to this level of detail when we’re talking
about transition planning, because we know this student
well, but they’re moving into a realm of working
with people who are caring for them, often physically,
emotionally, and they don’t have
that information. They don’t have the history
with the student. So I would really hope
that transition teams take the time to fill in
this grid, and actually put in the specific
modifications or adaptations that that student needs,
all of the information around… That was mentioned
around mobility, that Michelle Antinarelli
talked about, that Will Hersh talked about. I mean, all of that needs
to be sprinkled in like this, so that you can pass it on
to that receiving agency. So, again, looking
at the parameters around home, school, work, community,
and social interactions. And then looking at maybe
once the individual transitions or even planning, you could do
this certainly ahead of time, come up with sort of
a mock work schedule. Have the team come play
around that and think about, “This is the particular job
this student may be going to, and these are the areas that
we’re gonna have to consider.” The individual arrives at work. There’s a locker. They have to hang up their coat, they have to put their lunch
in the refrigerator. What’s that, Megan? WOMAN: How do they arrive? TRACY: Exactly, how do they
arrive? How do they get there? And then once they either arrive
in a van, a car, or a bus, how do they get
to the front door? Are there things that we can do
in the environment to make that whole process
easier and more independent? So, then thinking there might be
a work meeting or a morning meeting
where everybody gets together and they plan out the day. Even locating their work space
and their chair, locating their work materials,
even knowing who’s in the room and greeting your peers
or coworkers. That’s another issue. Thinking about the break area
and the snack area, so I would argue that we really
have to get to this level of detail to make transition
successful. So, this is the transition
planning form that DESE uses, and I would…
under where it says “Disability related needs,”
I would put information relative to CVI
and the necessary modifications and adaptations in this section. Okay, any of you who’ve
had experience working with this form,
have you been doing that? Mm-hmm, so that’s pretty much
where you put it. Now I would also argue– WOMAN: That form is filled out
by the school district. That’s not by MCB or any… TRACY: Right, so if you were a
TVI though, I would argue don’t say… you don’t have to stay
in that little box. I would say, “see attached,”
and you can add a grid with the modifications in it
so it’s really spelled out… Anybody got a question
or comment? Okay, so, we’re engaged in transition team training
initiative that we just ended
our first year. We had three teams
in Connecticut, three in Massachusetts,
and then one in New Hampshire. We’re probably going to move up
to about 25 teams starting in September. What this involved
was monthly team meetings and then interim webinars
also each month that would talk of related,
as specific to transition. And there were things like
developing a transition plan, person centered planning, how
do you access transportation? Different ideas
about work sampling. So what we did was we brought
these teams together on a monthly basis. It was an opportunity
for them to plan, and what we’re going
to be doing is working through that whole sort
of CVI transition grid that I just showed you for some of the students
that we have that have cortical visual
impairment. And I more than welcome…
I just want to welcome any of you if you already have
teams that you’re engaged in and you’d like to participate
in this training, let me know. We’ll be doing a training here
monthly, and I’m looking for teams
anywhere from age 14 to 21, obviously in Massachusetts. We really encourage full team
participation, but if it’s only, say, a TVI or an MCB worker
and a teacher, an MCB person and a parent,
we would also welcome that. So, we really found that that–
you have to get really, really intensive
around transition, and have ongoing discussion on
a regular basis for it to work. WOMAN: On that transition form
that the school fills out… Is that telling about
what the student needs when they transition,
or what supports are involved? TRACY: Correct. WOMAN: So if a parent sees that
or discusses that and sees there’s something not
in it, do they then bring it up, why isn’t orientation
mobility in this? TRACY: Correct. Mm-hmm. WOMAN: Just curious:
how many teams are you on? TRACY: Me, personally? Depends on the day. We have ed consultants
in four states. We’re not written into the IEP. So our job, actually,
is federal, is to work ourselves out
of a job. So ultimately we want that team
to take best practices around transition and do
that work on their own, right. So some of the teams that we’ve
been working with this year, they don’t need us anymore. I got three teams
at American School for the Deaf in Connecticut,
and I’m telling you, I thought I was gonna kill
those people at the beginning of the year, and I just
want to adopt all of them. It took them a while,
I had to feed them, but they really got it
and they’re starting to really apply with other
students as well, so… WOMAN: But there’s no… but you’re doing on
with the deafblind folks, you’re not doing what…
other groups like vision… TRACY: But what I’m saying is
if you have teams of students that have only vision loss,
I would welcome that, because for me, what I’m able
to kind of reflect back on is we’re looking
at a system-wide approach, and many of you will come in
contact with those individuals that do have vision and hearing,
and at least be able to take that information
and pass it forward. So… okay, question? MAN: Do you have any special
challenges around working with families for whom English
is a second language? TRACY: Oh yeah. We’re kind of lucky lately,
we’ve had a lot of Indian families come in
to our area, but we’re lucky our family
specialist in Connecticut knows six languages,
so I keep her really busy. So that sort of solves
that problem, but, yeah, a lot of the materials we have
to either search for the translation. There’s a lot of technology
that we use in order to do that but, yeah,
it’s a struggle. I mean,
it’s also a cultural issue. Many of our families say,
“Why do I have to do this? He’s not going anywhere,
he’s staying here.” They don’t even think of their
student, their child leaving. WOMAN: Or they trust that
the school district is doing exactly what they need to do. TRACY: Correct, so…
or they feel that advocating is being negative
and they don’t want to be… they’re questioning
and it’s totally not part of their culture. So that’s an another issue. Uh-huh. WOMAN: In that vein also,
I think what I’ve seen is that sometimes the family,
they’re not working. You know, they’re at home,
so they’re not getting the role model of somebody
who’s out in the community. TRACY: Correct. WOMAN: So there’s no interest. TRACY: So all of those examples
of work sampling and having opportunities
to try out different jobs, and you know I know that Perkins
has been working really hard on developing a program
around that for that very reason. And I think that for me, I see also
the population that… Students that have
more multiple disabilities, they’re not afforded, sometimes,
the same opportunities, and it’s really unfortunate,
because… I’ll close, I’m sorry,
there’s this one video I wanted to show you. If you ever, again, go on
West Virginia Deafblind Project and take a look at a video clip
of Mercedes. And it’s just a fabulous example
of a young lady that had all the great,
just really great things in place for her
to be successful. But I just wanted to add that,
again, I know that this is tough work. It’s detailed work. It requires resources,
it requires commitment, but in the end,
I think ultimately, that’s what we’re mandated
to do. That’s why we’re here. That’s why the money’s
been allotted. It’s our mandate to move forward
and support this population. So thanks very much,
happy Friday. (applause)

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