, Transition- Long again

[Guest guest]

,

I just jumped on and read your post to Martha. I understand your

trepidation. An hour away really isn't that bad as long you remain in contact

with her.

I have a few questions. Will receive O & M on the campus there? She

should. You get that through the Commission for the Deaf/Blind. Is there

access

to transportation at the community college? I am including The Ride. Have

you applied for that? If not do it now. Also what does need to be

successful in college? Does she need fewer classes, an interpreter, a computer,

extended time on testing, tutoring...? If so get it documented.

The technology that's out there lessens that gap but no one shares about

what's available. You have to find it yourself and then push for it. There's

tons. I now work with one of the leaders in the field of educational technology

and am more than impressed. For example I am going to see a program where a

trained person sits in the class and is able to take notes on their computer

that is verbatim of what the professor says. That then comes up on the students

screen instantly. If the student needs clarification she can type it in and

be answered. If Patty were nonverbal she could type in her question to the

person and they would ask the professor for her. And that's just one example.

There are many other programs.

If lives in a dorm is it set up for her needs? Is her room handicap

assessable?

Don't only think of what needs for her classes. Does she need a

mentor? Are there opportunities for community or social connections?

Does need a counselor? If so get one who has experience in working

with adults who have disabilities.

Are you 's guardians? If not no one who works with her, even

physicians, can communicate with you about her unless she requests that. We are

Patty's

guardians not because of her need, but for us to protect her and make people

do their jobs. You have to apply through the courts to become a guardian. If

not, do it now.

Is she in the throws of " Turning 22? " She is under the Commission for

Deaf/Blind, right? Don't expect people to do their jobs in servicing .

For

example, Patty had to miss two appointments at Easter Seals. Her Deaf/Blind

coordinator continued to say Patty missed those appointments insinuating she

wasn't doing what she needed. She should have found a way for Patty to get

there.

Actually Patty missed those appointments because she suddenly didn't have

transportation. The provider can't understand Patty's at the mercy of others and

not the other way around. Oh, and there's been some discussion of Patty's

courses being financially covered. The college didn't receive the funding

yet-UGH. Her personal provider is really frustrating us. She helps every now

and

then but most of the time she only does what we tell her to. It shouldn't be

that way. But when we get totally frustrated we (and Patty) call Mitch

Sanborn who is the Commissioner for D/B. He'll work with you nicely. I like

him.

You should also fill out an application for DB-CAN. Patty has an SSP through

them. This person takes Patty shopping, to deaf socials, or anything else

outside of our lives. It isn't a transportation program but a Community

Activity Network. They are also with DB-Link. I think they're out of Brookline

but

I am not sure. It's been wonderful for Patty.

Also forget connecting her with Helen Keller National Center. Useless at

best. They need to open their minds and services for CHARGE. The HK provider

in

MA is incompetent. Her name is Ellen Barbarez. She'll act like she's

interested and will help but she's the most lazy and irresponsible person we

met. We thought appropriate assistance would be there but they haven't been

supportive. For example we begged for assistance in finding transportation. She

kept telling Patty she'd help her but kept inviting her to come talk with her

in her office. What a silly thing, Patty couldn't get there. More important

than that is there is total lack of understanding of CHARGE and even

Deaf/Blind individuals like Patty and . It isn't worth your time

connecting with

them. Useless actually. I am sure if Patty and were more severely

impaired they'd receive better services. But service programs need to step it

up

to service all who need it and not just those they " THINK " need it. They also

need to raise that bar. And the services they provide need to be appropriate

or it's just not worth 's time. If you look at what all these programs

say they provide and then look at what they actually do the two don't go

together.

Also have you applied for SSI? If so have you also applied for Mass Health?

The two are separate except you get Mass Health if you get SSI.

Have you set up with adult medical services? Some things we go through

Boston Children's but the others are through Brigham and Women's. The two

are interrelated.

Last, don't let her move on until all things are in order. Once they leave

education there are no protections as an adult.

, transition is a terrifying time and adulthood is difficult. But that

doesn't mean it won't get done or that it continually has to be hard. We just

need to share and make people do their jobs.

Incompetence needs to go away!

Get connected with Easter Seals in Boston, not Worchester. They've been

wonderful. No, they've been more than wonderful. Kay Ann Roushe has been a

gift,

a true gift.

Oh and make sure has been evaluated with a psych-Pam if able! If not

and a college needs to evaluate her they don't have experience of deaf/blind

and therefore can't find her true potential.

By the way, Patty's happy. That's the most important. She's happy.

will be too. Know that. It's work to continue to help them be self confidant

but not impossible.

Last, Document, Document, Document.

I am sure that Perkins is doing well by .

If there's anything more I'll try to remember.

Bonnie, Mom to a 24, Patty CHARGE 22, and wife to

[Guest guest]

:

I just saw Bonnie's post to you and her reference to me. Granted things

are quite hairy here now, but I don't like having missed something.

Please repost! Knowing how nutty things are here, I've probably already

responded, but I hope not. Just tell me what I missed or can no longer

remember. Lord, I suddenly feel old!. Martha

[Guest guest]

Hi Martha,

You didn't miss anything. ;-) You wrote that you were going to respond to

Bonnie off-list

re the recent experiences Patty and Kris have gone thru. I sent you a note

asking to be copied in as is having her first exit meeting Nov. 8th. and

wanted to catch any info that might indicate areas I should pay attention

to.

Bonnie sent me a great post outlining many areas that need attention, and

I'll take all advice for avoiding pit holes. There are big plans in the works

for after graduation. And I believe we'll need to be very aware and

thorough (no stone unturned) for success.

Thanks,

in Ma. ( 21 yrs old)