Re: Partners in Policymaking

[Guest guest]

,

I took it in 2000 and have used the information ever since...

I have spoken to our legislators even when they told me to cut it short...I

explained how horrible and narrow-minded he was being.....I learned so much

about the world of disabilities that is unknown to the masses...

I have all my information at my fingertips and use it every day

It is well worth the time invested....

Good luck

Ellen mom to 8

[Guest guest]

-

I have never heard anything but absolute positives about Partners. The

STARS training my organization is doing in IL is modeled on the Partners

training. (For IL families -- STARS will be in the Chicago area next year

beginning fall 06 and then downstate in fall 07). Partners is no longer

going in IL -- long story. You will learn how to advocate for yourself and

others with legislators and policymakers. Those skills will help anytime

you have to work with a team or an individual for your daughter -- whether

it's a medical team, school, adult services, legislation, etc. Unless it's

run very poorly, I don't see how you can *not* benefit from the time spent

and all that you will learn. For a taste of it, you could take the online

courses on their website. I've been intending but haven't done it yet.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

,

The training is invaluable. I took it far too late for my Tyler - his

disabilities aren't considered developmental disabilities, but the

information would have helped us a lot. We have been far more successful

navigating the schools and getting Dylan's needs met, not by being

adversarial, but by being quietly confident about what the schools truly can

and cannot say. I now know what statements the schools say as " truths " are

not really, and I don't let them slide. If my trusting self had only

realized that with Tyler.

Of course advocacy goes beyond schools to politics. I have certainly done

my share there at a state level, and have sent many letters to DC - some day

when the time is right, I would like to testify to congress on the

uniqueness of deafblindness and help get services for our young adults.

The content is national, but the speakers are different for each group, and

of course the flow of the weekends is heavily influenced by the participants

and the skill of the leader in keeping things on track.

The information is invaluable - having it early - what a gift.

The down side is, emotionally hearing of all the ways individuals had been

taken advantage of and children harmed by school politics was heart

breaking. I felt that collective pain and at times felt powerless to

influence a change, so it was heavy at times.

My biggest caution is to use the information to be proactive and wise, and

to navigate the systems to build relationships. The people from our group

who went at it yielding the information like a sword did not fair so well.

Kim

> Our local three-county area just got approved for a grant to hold Partners in

> Policymaking training this year. The training will be seven Friday/Saturdays

> throughout the year. I've applied and have a telephone interview coming up

> next week with the coordinator. I guess there are a limited number of spots,

> so they can only choose so many applicants to attend.

>

> I've heard a lot of you mention that you've taken this training and would

> like to know more about your impressions of it. Was it worth your time? What

> were the most useful things you learned? Have you had the opportunity to put

> your training to good use?

>

> , mom to (4)

>

>

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[Guest guest]

Thanks for the info, everyone. I'm glad to hear that this training was so

helpful to you. I've had it on my radar for a while now, but this is the first

time it's been offered locally. I was kind of afraid that maybe I was doing it

too early in the process to be useful since is only 4, but it sounds like

the earlier, the better. And I not only want to become a good advocate for just

, but for all people with disabilities, no matter what their age or

circumstances--and particularly the deaf-blind.

I'll let you know how the interview goes.

, mom to (4)

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[Guest guest]

-

You're right that it's not too early. Think of all that needs to change in

the next 14 or so years just for to have the opportunities you want

for her! When I think of how slowly the wheels of progress move, I actually

worry that I won't have enough done before Aubrie needs it. On the other

hand, just being a part of the process and being " in the loop " opens many

doors and enables us to get things done more effectively within the system

as it is.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Michele,

You are right - simply the connections we make as we go to these events can

be more powerful in the long run than the actual topic we went to learn

about. It is people that make the difference.

Kim

> -

> You're right that it's not too early. Think of all that needs to change in

> the next 14 or so years just for to have the opportunities you want

> for her! When I think of how slowly the wheels of progress move, I actually

> worry that I won't have enough done before Aubrie needs it. On the other

> hand, just being a part of the process and being " in the loop " opens many

> doors and enables us to get things done more effectively within the system

> as it is.

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

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[Guest guest]

You know, I've been saying that I'll write a long post about how we've done

(oh, my, are trying to do) an adult situation for ; however, I really think

that you've hit it. Get to know people! I refused to be separated from my

family for long stretches of time, unlike many mothers I met here, but I got

to know the people in " power " at meetings. I have notebooks (poorly

organized) going back many years - phone numbers, impressions, etc.

I've found that I can still call these folks. At times, I'm referred to someone

I cannot recall but who obviously remembers and me. I hate the

idea of the " old boys' system, " but connections are critical. It also doesn't

hurt to meet for drinks or coffee at a conference or meeting. Martha ---ga

ga because K. has decided not to sleep or go to the bathroom.

[Guest guest]

,

Boy oh boy I am hoping you get chosen. Partners in Policymaking training is

remarkable. Learning the history, rights and laws, how they are developed and

how to make a change is important but there's more. It is not only what you

get out if it but what you put into it that is great. Each person has a

" task " they have to do for their training. I forget really what mine was

supposed

to be at the beginning but during the process I used the training to begin a

parent support group in the town I lived in for those who had children serviced

under special education. This group started out with only four of us and

ended up tons of parents in the town and others from nearby towns joining as

well.

I agree with Kim that you can't do anything swinging a sword or things don't

get done. But I must add that you learn that you can't back down and how to

stand strong. Right always wins over might or fight. Truth and strength lead

the way.

Sadly our town's Special Ed director and her cronies were often about the

fight and not the children. When we first started the group because it was

public the director of the Special Education department sent at least two staff

members to sit and take notes of what the parents said. They just sat there

taking notes. They tried to intimidate people. That only worked on one or two

individuals. It is amazing what happens when people find they aren't alone and

can stand together. People get brave. Quickly that intimidation didn't work

and it became something funny, sad even.

Through the training and the connections we not only had parent meetings but

brought in various specialists, speakers and training programs. Most of those

we brought in said they had never seen a town which had such anger,

intimidation and such harsh treatments of parents by those in the special ed

department.

But luckily they also saw that we had some of the best teachers and staff

for our children as well.

Not only did we work on educational issues we did other things. There were

community issues to work on. We even had a meeting with our state legislator

in my house. (I had it in my house to make it a private meeting so our SPED

Director couldn't come!)

The whole point of Partners is to learn the given information (tons and tons

of information) and using it to make a positive change. That can be done for

your child, your town, your state and/or your country.

I also have to say that it helped me at our PPT's for Patty too. No longer

could they use force on us because all I had to do was use the correct

terminology and they knew I knew what was occurring and what Patty's rights

were.

Intimidation went away and with that the fight went into something else, it's

called empowerment. When I learned empowerment I was then able to help Patty

learn that too!

Go for it. Good luck with the interview but I am sure you will knock them

dead.

Bonnie

[Guest guest]

Thanks for all the info and support, Bonnie! I had thought I'd heard you

mention before what a positive experience the Partners training had been for

you. I'm looking forward to it if I get chosen. The thought of learning so

much more about the laws, policies, etc., hearing the speakers, meeting other

parents, networking, etc.--I know it will all be so useful. I'll let you know

how the interview goes.

, mom to (4)

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