(Man) The transition institutes open a door for students
to learn about organizations and agencies
that can help them with transition.
It's often hard to navigate
the numerous education and adult service systems.
Knowledge and support through this process is crucial,
and partnering with organizations
like the State Deaf-Blind Project, Parent Centers,
and the Helen Keller National Center,
and other organizations,
can provide this type of support.
I think we've talked about just how complex the life is
for someone who is deaf-blind
and when I say that,
I'm talking about the fact that
your dream for what you want your life to be like,
maybe across many settings,
different things you want to get out of life,
you want to go places,
you want to live in different environments,
you want jobs.
All of those dreams can only happen
when you bring resources together in the room
and those resources are generally coming
from different agencies,
because there is an agency that supports transition,
transportation,
there's an agency that supports living,
an agency that supports work, you know,
supports around work,
and just an agency that says, "Let's go have fun!"
You know.
But there's no one agency
that generally supports all areas of life,
so, just by the complexity of life
of someone who is deaf-blind it's going to mean
that you are going to always bring agencies together
to figure out the support for a whole day,
a whole week, a month, a year.
You are going to need all these different agencies together
to actually make good life happen
for someone who is deaf-blind.
In Arkansas, the family, we call it Family Consultant,
and I work closely with the Education Consultant.
It's a full-time position but we serve the families that,
whose children have become eligible for our program.
Our primary goal for our State
really is for the families to be able
to connect with each other,
as well as navigate the system, that,
through the education system and the medical system,
we try and support them in that direction too.
But the key thing is to bring families together,
so that they can learn from each other,
support each other, and realize
that they're not in this isolated community,
that they don't know where to turn to,
or where to go, or who to talk to.
The fact that this is a multi-state camp,
it's been really tremendous for us.
Actually, a few months ago
we had a local state event for transition
and we were able to connect families
with some of the local resources,
but because we are, you know, a smaller state,
we had a fewer number of kids there, and so,
while it was really nice for parents
to meet each other locally,
it was really nice for families to connect
and the kids enjoyed themselves.
Having a multi-state event like this
allows kids to meet peers
that they wouldn't otherwise meet
and they develop relationships and develop friendships.
And then we are able to get plugged in
to more of the national resources,
and some of the tremendous speakers that we have here,
so, I think it's an incredible benefit.
And just the ability to watch the kids come in,
and be nervous, and sitting with their parents,
and not sure of things,
and by the end of the first night
be sitting at tables
and choosing this morning to sit with other kids
and to have conversations.
It's just an incredible amount of confidence
that I see them develop,
and I think you can't really do that
on a small scale,
having this joint relationship with other states
helps us to increase those numbers
and give a lot of options to the kids.
As a state project,
our role after this institute is then to make sure
that the skills and the information
that is shared here
is something that's carried on by those students
and to continue to support their families
and promoting those skills.
The other piece that I think is really critical for us
as a project,
is helping students to learn how to,
and schools districts, to learn how to have
more person-centered transition planning meetings,
so that there can be discussion about,
the discussions that are happening here,
discussions about hopes and dreams
and goals for the future,
and what are the steps to get there,
those are discussions that can happen
with trusted supports in the family,
trusted supports in the school.
When I think of how person-centered planning
can help just programs,
influence programs that are responsible
for the education of students who are deaf-blind,
person-centered planning philosophy says:
"We are not real sure
how we should best support this student, you know,
this is a very unique individual
we probably have a lot to learn,"
so, you first learn the student, you know,
and then listen to the other people
who know the student best,
that we, as educators may not really know
how to go about making life good,
or help the student learn.
We've got a lot of people we've got to listen to.
So, person-centered planning
can actually influence the way programs view themselves,
you know, by having a different view of the student,
and really thinking about that individual student,
and knowing, wow, we have so much to learn
that we just don't know.
One of the most important things about being a rep
is our partnerships.
We really want to build capacity in our regions.
And when I say region
I'm talking all four of my states, okay?
And that includes not only just the adult services,
but truly the young adult services.
Getting in there early
and trying to develop that strong partnership
with locations that may have never worked
with adult services early on.
For instance,
I've started working with several of the schools
in my area,
going in there, talking with the principals
and the directors and saying, "Hey, I'm Marilyn,
nice to meet you,
I want to let you know what I do,
and I also want to let you know about the services in your area,
and set up meetings and get us all together."
Rather than starting when the child or young adult
becomes twenty-two and almost about to graduate,
or twenty-one in some states,
we're trying to get in there earlier and work with them.
Maybe somebody wants to work with us at the age of fifteen,
but they're not ready yet, but they have questions,
"What to expect for the future?
What services are out there?
Where can I go to get advocacy?"
So, we get in there
and try to build those relationships
with the families, with the individual students,
with the older adults, I mean, with everybody.
Because we never close a case, and maybe twenty years from now
they say, "I need you now.
I didn't need you when I was fifteen,
but I need you now."
So, we may have to come back and let them know,
"We're here for you,
whenever you're ready, we'll take you where you're at."
Many people don't realize, but the families need help too.
The families get tired of advocating.
Trying to reach out, either it's with VR,
only if they're looking for a job.
Mental house services, somebody will advocate
only if they have a mental health diagnosis,
you know, if it's in the school system,
they'll advocate if they're in the school system.
What about everywhere else?
The rep can come in there and provide that connection,
and that support in between all of these agencies,
provide that collaboration and let them know,
"I'm here for the provider, and I'm here for the family,
I'm here for everybody to get everything linked together,
nobody's left behind here,
we're going to take you step by step,
and again, you can reach out to us anytime."
There is, with the state deaf-blind projects
they have deaf-blind census, okay?
For us, we have the Helen Keller National Registry too,
and this is helping us in increasing net registry,
that registry, which we also provide statistical information,
letting the federal government know how many are in our states,
you know, making sure we maintain the services we have,
and if we can, you know,
adding additional services.
That gets us in the door, meeting the families,
meeting the teachers too,
and meeting the students
before they even come out of the school system,
giving them that additional support.
Some schools don't provide any equipment,
so, what we're doing is we're finding that out,
getting there and advocating,
explain to the schools, you know,
"This is your job, is to provide that service."
The families go,
"We didn't realize that."
And then, now they also have equipment at home
to help them.
This National Deaf-Blind Equipment Distribution Program,
okay?
Or, as people say that: "I Can Connect," okay?
That program has been phenomenal for us,
it's helping us get into the school system,
it's helping us reach in there and say,
"Listen, if you have somebody five years old, and up,
they can get equipment through this program, for free,
they can have their equipment at home."
So, everything they're brought and, you know,
they're introduced to at school,
they can now continue and use it at home.
Number one goal for that program, of course,
is distance communication.
I see a lot of our folks are isolated.
Their only socialization is in the school,
so, for them now, to go home,
they can stay connected with all of their friends,
all of their, you know, teachers,
and now a lot of teachers are doing stuff online.
So they're able to, then, connect at home with that.
The great thing about the "I Can Connect"
is we are reaching out to families
and individuals of all ages.
Like I said, five years old, we can get somebody equipment,
okay?
All the way to, I think one of the oldest consumers I had
was ninety-eight years old, okay?
So, like I said, "you need us now, we'll be there,
you need this later, we'll be there," okay?
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