Re: Bad to worse in the state of Illinois

[Guest guest]

Wow I just can't understand how this can be happening.  How can the state even

think about cutting fund. Someone is really missing the boat. What more can we

advocates be doing???  It seems like all the the letters and phone call just are

not doing enough.  I'll continue to keep pushing!!! Ugh!

Tara Kosieniak

www.sibsnetwork.org

Sibling resources:

AdultSibsNet/

http://sibleadership.blogspot.com/

http://sibsnetwork.blogspot.com/

 

 

 

From: ellenbronfeld <egskb@...>

Subject: Bad to worse in the state of Illinois

IPADDUnite

Date: Wednesday, July 16, 2008, 4:54 PM

FYI...

" The House failed to restore the 2% cut to grants & purchase of care

the Governor imposed.

The vote was 58/28, the motion failed!

This is awful! "

What this means is no opportunity for those waiting for supports and

services and diminished opportunity for those receiving supports and

services...programs will get shortened, altered or cut

altogether.. .Staff will leave without the pay they deserve...

Ellen

[Guest guest]

I think we need to have continuous dialogue with our local legislators to keep

our issues on their radar...our personal stories and how lack of funding is

affecting our families is critical...

Ellen

Ellen Garber Bronfeld

egskb@...

Bad to worse in the state of Illinois

IPADDUnite

Date: Wednesday, July 16, 2008, 4:54 PM

FYI...

" The House failed to restore the 2% cut to grants & purchase of care

the Governor imposed.

The vote was 58/28, the motion failed!

This is awful! "

What this means is no opportunity for those waiting for supports and

services and diminished opportunity for those receiving supports and

services...programs will get shortened, altered or cut

altogether.. .Staff will leave without the pay they deserve...

Ellen

[Guest guest]

I ran into a friend of mine who is an OT in a local grade school

district. Our kids were friends all through grade school, Jr. High

and HS and one of her girls was my student. After catching up with

the kids, she asked me if IL was really 51st in the country for

adult services--since she works with little kids, she's not always

aware. She looked at me and then asked, " why am I working so hard

for my students? After they age out, there won't be anything for

them. " Sent a chill up my spine.

We had an interesting discussion at dinner, after hearing (on the

news) Rod B wants to bring in the National Guard and State Troopers

to help with Chicago's recent violence problems. Where would the

money come from for those " nice thoughts " ?

I'll keep contacting my state rep and he'll keep ignoring me, but

I'll still do it.

Marie

>

> From: ellenbronfeld <egskb@...>

> Subject: Bad to worse in the state of Illinois

> IPADDUnite

> Date: Wednesday, July 16, 2008, 4:54 PM

>

> FYI...

>

> " The House failed to restore the 2% cut to grants & purchase of

care

> the Governor imposed.

>

> The vote was 58/28, the motion failed!

>

> This is awful! "

>

> What this means is no opportunity for those waiting for supports

and

> services and diminished opportunity for those receiving supports

and

> services...programs will get shortened, altered or cut

> altogether.. .Staff will leave without the pay they deserve...

> Ellen

>

>

[Guest guest]

Marie, A few years ago I asked a transition teacher why they were having

18-21 year old people coloring , doing crafts and going to pumpkin farms

during a time when transition teachers and voc people should be banging down

the doors to get these folks employment . The transition teacher , replied

the students need to learn how to pass time and this was considered a

valuable skill for people when they were at the workshop. It was stated as

thought a workshop were the only option and school was preparing people to

while away their hours at a workshop. IPADD is for those of us who have

older children, so this will go on deaf ears in a way. But parents of

younger kids. 1-2-3 years old wold be served to have a vision of what kind

of life they want for their child, so all the o-t p-t etc is really meant

for something. I often find it interesting when I see a transition bus pull

up to Starbucks with a group of young adults..I wonder why. Do we assume

they will get a job there? do we assume they will be able to get themselves

there? do we guess they will be able to afford a $4 for a Starbucks coffee.

I hope the therapist s we know will be encouraged to get the young ones

ready as best they can and not give up because this state is so bad. Some

folks have no choice but to live here for jobs, family connections

whatever. The therapists comments are chilling and sad. So maybe that

should give the rest of us parents of young adults the opportunity to

encourage parents of the young kids to get better educated about what the

future could hold. I was told " take one day at a time " and sometimes that

advice can end you up living a nightmare, because we let the pros handle

everything. Now that we are , er our kids are older, we are empowered.

Often time the younger ones arent, and that is the that needs to be

empowered with good information about what the future , a bright future

could hold. I think about Joe and Marilynn population Hens and the solid

work they have done with a very challenging situation. They realized early

on what supports were needed, and it is a lot of work. Micro businesses

are a lot of work, but the pay off is in those micro boards is a life in

the community. We have to work on our lawmakers, but we also need to be

dilegent about looking into the future and what our role is. Quality of

life for any of us is not easy to come by. Good luck to all of us. Cindi

[Guest guest]

I would like to make a YouTube video about it.

What do you want me to say in the video?

Any outline or paragraph is helpful in my speech. I see if I do

something.

Tell me which politician beside our governor in the Illinois that is

not supporting it.

[Guest guest]

Ellen,

Why doesn't this surprise me? Is it because some people with

disabilities aren't registered voters? That they don't matter to

the " powers that be " ?

Having dealt with issues since was born, schooling, housing,

behavior difficulties, medical issues, behavior issues, work, now

group home issues & (did I mention behavior problems???) I know I

can't give up, but I'm so tired of fighting the fight, I'd just like

to have a life....at least for a week. :0)

Liz

[Guest guest]

Good advice for parents of younger children who " lurk " on IPADDU, !

Yes...plan for the future early and do not let your dreams be limited by the

narrow views of those who lack vision and by those who sabatoge success with

negative thinking.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Re: Bad to worse in the state of Illinois

Marie, A few years ago I asked a transition teacher why they were having

18-21 year old people coloring , doing crafts and going to pumpkin farms

during a time when transition teachers and voc people should be banging down

the doors to get these folks employment . The transition teacher , replied

the students need to learn how to pass time and this was considered a

valuable skill for people when they were at the workshop. It was stated as

thought a workshop were the only option and school was preparing people to

while away their hours at a workshop. IPADD is for those of us who have

older children, so this will go on deaf ears in a way. But parents of

younger kids. 1-2-3 years old wold be served to have a vision of what kind

of life they want for their child, so all the o-t p-t etc is really meant

for something. I often find it interesting when I see a transition bus pull

up to Starbucks with a group of young adults..I wonder why. Do we assume

they will get a job there? do we assume they will be able to get themselves

there? do we guess they will be able to afford a $4 for a Starbucks coffee.

I hope the therapist s we know will be encouraged to get the young ones

ready as best they can and not give up because this state is so bad. Some

folks have no choice but to live here for jobs, family connections

whatever. The therapists comments are chilling and sad. So maybe that

should give the rest of us parents of young adults the opportunity to

encourage parents of the young kids to get better educated about what the

future could hold. I was told " take one day at a time " and sometimes that

advice can end you up living a nightmare, because we let the pros handle

everything. Now that we are , er our kids are older, we are empowered.

Often time the younger ones arent, and that is the that needs to be

empowered with good information about what the future , a bright future

could hold. I think about Joe and Marilynn population Hens and the solid

work they have done with a very challenging situation. They realized early

on what supports were needed, and it is a lot of work. Micro businesses

are a lot of work, but the pay off is in those micro boards is a life in

the community. We have to work on our lawmakers, but we also need to be

dilegent about looking into the future and what our role is. Quality of

life for any of us is not easy to come by. Good luck to all of us. Cindi

[Guest guest]

I hear you, Liz...It just shouldn't be this hard!

I do think that at least one reason that people with disabilities are

disenfranchised is because they are thought of us non-voters...we can change

that by registering them to vote and letting our elected officials know that the

votes of our sons and daughters WILL matter!

At least in my voting precinct, the election officials bend over backwards to

accomodate my son and there is never any problem with my assisting him in any

way. Now, with early voting, it is easier than ever...no lines, no waits...

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Bad to worse in the state of Illinois

Ellen,

Why doesn't this surprise me? Is it because some people with

disabilities aren't registered voters? That they don't matter to

the " powers that be " ?

Having dealt with issues since was born, schooling, housing,

behavior difficulties, medical issues, behavior issues, work, now

group home issues & (did I mention behavior problems???) I know I

can't give up, but I'm so tired of fighting the fight, I'd just like

to have a life....at least for a week. :0)

Liz

[Guest guest]

Totally agree with registering to vote. Past experiences with my legislators

has  shown that they will vote on a bill or issue based on the number of phone

calls they get from registered voters. I am one of those parents with younger

children, lurking on IPADD (preparing for adulthood) listening and learning from

all of you.  My son is 13, but when he turns 18 (January 31, 20013) he will be

registered to vote in order to make a difference. Also, since my son is younger

than most here, I am all too familiar with the many, many problems in Illinois

public education. FYI....Illinois is 47th in the nation in regards to education.

Perhaps the reason Illinois is so bad with the adult services is because they

don't take seriously educating young people (children) with disabilities. If

Illinois does not believe in investing in our disabled children, why would they

feel the need to invest in disabled adults? The problems Illinois is facing with

disabled

adults is just a mere reflection of how they treat disabled children....Thanks

for letting me lurk, listen and learn....chris, mom preparing for Jake's

adulthood now.....

From: Ellen Bronfeld <egskb@...>

Subject: Re: Re: Bad to worse in the state of Illinois

IPADDUnite

Date: Wednesday, July 16, 2008, 10:35 PM

I hear you, Liz...It just shouldn't be this hard!

I do think that at least one reason that people with disabilities are

disenfranchised is because they are thought of us non-voters.. .we can change

that by registering them to vote and letting our elected officials know that the

votes of our sons and daughters WILL matter!

At least in my voting precinct, the election officials bend over backwards to

accomodate my son and there is never any problem with my assisting him in any

way. Now, with early voting, it is easier than ever...no lines, no waits...

Ellen

Ellen Garber Bronfeld

egskbsbcglobal (DOT) net

Re: Bad to worse in the state of Illinois

Ellen,

Why doesn't this surprise me? Is it because some people with

disabilities aren't registered voters? That they don't matter to

the " powers that be " ?

Having dealt with issues since was born, schooling, housing,

behavior difficulties, medical issues, behavior issues, work, now

group home issues & (did I mention behavior problems???) I know I

can't give up, but I'm so tired of fighting the fight, I'd just like

to have a life....at least for a week. :0)

Liz

[Guest guest]

Hi :

Hopefully you can advocate for other families to register their young adults to

vote, when your son's peer group turns 18!

Meanwhile...I agree...there needs to be lots of changes in the educational

arena, too!

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Bad to worse in the state of Illinois

Ellen,

Why doesn't this surprise me? Is it because some people with

disabilities aren't registered voters? That they don't matter to

the " powers that be " ?

Having dealt with issues since was born, schooling, housing,

behavior difficulties, medical issues, behavior issues, work, now

group home issues & (did I mention behavior problems???) I know I

can't give up, but I'm so tired of fighting the fight, I'd just like

to have a life....at least for a week. :0)

Liz

[Guest guest]

Good for you and all 'lurkers' on this site who have younger kids. I wish this

group had been around when my own daughter was younger, I know I've learned so

much more from all of you than I give in return!

On the subject of voting and registering to vote, we moderators had previously

agreed to run this topic in August and September because it is important,

confusing and also somewhat controversial. While not all of us agree on voting

rights etc, we'll post information that will hopefully enable each person to

make their own informed decisions. In this important election year, we felt we

needed to do this. So stay tuned for more to come on voting in the next few

months.

Thanks,

Laurie

Re: Bad to worse in the state of Illinois

Ellen,

Why doesn't this surprise me? Is it because some people with

disabilities aren't registered voters? That they don't matter to

the " powers that be " ?

Having dealt with issues since was born, schooling, housing,

behavior difficulties, medical issues, behavior issues, work, now

group home issues & (did I mention behavior problems???) I know I

can't give up, but I'm so tired of fighting the fight, I'd just like

to have a life....at least for a week. :0)

Liz

[Guest guest]

Ellen it is not only the lack of raises - it is a 2% across the board cut in

funding for DD agencies!!! They are already at the bare minimum - they think

staff cuts is the only way. And we all know that less staff - will mean more

behavior problems! We have to keep working with our legislators!

Bad to worse in the state of Illinois

FYI...

" The House failed to restore the 2% cut to grants & purchase of care

the Governor imposed.

The vote was 58/28, the motion failed!

This is awful! "

What this means is no opportunity for those waiting for supports and

services and diminished opportunity for those receiving supports and

services...programs will get shortened, altered or cut

altogether...Staff will leave without the pay they deserve...

Ellen

[Guest guest]

You are right, ...it is across the board...

Thanks...and you are right that we must keep up the pressure and the contacts

with our legislators...

Ellen

Ellen Garber Bronfeld

egskb@...

Bad to worse in the state of Illinois

FYI...

" The House failed to restore the 2% cut to grants & purchase of care

the Governor imposed.

The vote was 58/28, the motion failed!

This is awful! "

What this means is no opportunity for those waiting for supports and

services and diminished opportunity for those receiving supports and

services...programs will get shortened, altered or cut

altogether...Staff will leave without the pay they deserve...

Ellen

[Guest guest]

I want to reiterate my gratitude to those of you who started and

contribute to IPADDU. I am an SLP, now in private practice, down in

Champaign. I have had the good fortune to have been working here for

more than 30 years (child prodigy perhaps?). As a result, I have also

had the privelege of seeing some kids/families- professionally, in

the community and through friendships-go from infant/toddler stage to

adulthood. Boy, have I learned a lot from these kids and their

families. PLEASE, continue to share the nightmares, the successes,

the regrets for what we should have done when they were younger types

of stories. I know that my therapy, consulting, advice and

recommendations have changed drastically as I have had the chance to

see what really is important in the big picture, learn the skills

that need to be taught to be successful outside the special education

classroom (geez!), and how help families and educators take a longer

view of what we are doing. I know that many of the " mistakes " that

were made in the past were made by well-intentioned people who didn't

have the advantage of knowing what life is like outside the public

school. So, thanks to all of you who are sharing and guiding us...

Ann

>

> Marie, A few years ago I asked a transition teacher why they were

having

> 18-21 year old people coloring , doing crafts and going to pumpkin

farms

> during a time when transition teachers and voc people should be

banging down

> the doors to get these folks employment . The transition

teacher , replied

> the students need to learn how to pass time and this was considered

a

> valuable skill for people when they were at the workshop. It was

stated as

> thought a workshop were the only option and school was preparing

people to

> while away their hours at a workshop. IPADD is for those of us who

have

> older children, so this will go on deaf ears in a way. But

parents of

> younger kids. 1-2-3 years old wold be served to have a vision of

what kind

> of life they want for their child, so all the o-t p-t etc is really

meant

> for something. I often find it interesting when I see a transition

bus pull

> up to Starbucks with a group of young adults..I wonder why. Do we

assume

> they will get a job there? do we assume they will be able to get

themselves

> there? do we guess they will be able to afford a $4 for a

Starbucks coffee.

> I hope the therapist s we know will be encouraged to get the

young ones

> ready as best they can and not give up because this state is so

bad. Some

> folks have no choice but to live here for jobs, family connections

> whatever. The therapists comments are chilling and sad. So maybe

that

> should give the rest of us parents of young adults the opportunity

to

> encourage parents of the young kids to get better educated about

what the

> future could hold. I was told " take one day at a time " and

sometimes that

> advice can end you up living a nightmare, because we let the pros

handle

> everything. Now that we are , er our kids are older, we are

empowered.

> Often time the younger ones arent, and that is the that needs to

be

> empowered with good information about what the future , a bright

future

> could hold. I think about Joe and Marilynn population Hens and

the solid

> work they have done with a very challenging situation. They

realized early

> on what supports were needed, and it is a lot of work. Micro

businesses

> are a lot of work, but the pay off is in those micro boards is a

life in

> the community. We have to work on our lawmakers, but we also need

to be

> dilegent about looking into the future and what our role is.

Quality of

> life for any of us is not easy to come by. Good luck to all of

us. Cindi

>

[Guest guest]

Thanks, Ann...I too have learned so much from this group...

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Bad to worse in the state of Illinois

I want to reiterate my gratitude to those of you who started and

contribute to IPADDU. I am an SLP, now in private practice, down in

Champaign. I have had the good fortune to have been working here for

more than 30 years (child prodigy perhaps?). As a result, I have also

had the privelege of seeing some kids/families- professionally, in

the community and through friendships-go from infant/toddler stage to

adulthood. Boy, have I learned a lot from these kids and their

families. PLEASE, continue to share the nightmares, the successes,

the regrets for what we should have done when they were younger types

of stories. I know that my therapy, consulting, advice and

recommendations have changed drastically as I have had the chance to

see what really is important in the big picture, learn the skills

that need to be taught to be successful outside the special education

classroom (geez!), and how help families and educators take a longer

view of what we are doing. I know that many of the " mistakes " that

were made in the past were made by well-intentioned people who didn't

have the advantage of knowing what life is like outside the public

school. So, thanks to all of you who are sharing and guiding us...

Ann

>

> Marie, A few years ago I asked a transition teacher why they were

having

> 18-21 year old people coloring , doing crafts and going to pumpkin

farms

> during a time when transition teachers and voc people should be

banging down

> the doors to get these folks employment . The transition

teacher , replied

> the students need to learn how to pass time and this was considered

a

> valuable skill for people when they were at the workshop. It was

stated as

> thought a workshop were the only option and school was preparing

people to

> while away their hours at a workshop. IPADD is for those of us who

have

> older children, so this will go on deaf ears in a way. But

parents of

> younger kids. 1-2-3 years old wold be served to have a vision of

what kind

> of life they want for their child, so all the o-t p-t etc is really

meant

> for something. I often find it interesting when I see a transition

bus pull

> up to Starbucks with a group of young adults..I wonder why. Do we

assume

> they will get a job there? do we assume they will be able to get

themselves

> there? do we guess they will be able to afford a $4 for a

Starbucks coffee.

> I hope the therapist s we know will be encouraged to get the

young ones

> ready as best they can and not give up because this state is so

bad. Some

> folks have no choice but to live here for jobs, family connections

> whatever. The therapists comments are chilling and sad. So maybe

that

> should give the rest of us parents of young adults the opportunity

to

> encourage parents of the young kids to get better educated about

what the

> future could hold. I was told " take one day at a time " and

sometimes that

> advice can end you up living a nightmare, because we let the pros

handle

> everything. Now that we are , er our kids are older, we are

empowered.

> Often time the younger ones arent, and that is the that needs to

be

> empowered with good information about what the future , a bright

future

> could hold. I think about Joe and Marilynn population Hens and

the solid

> work they have done with a very challenging situation. They

realized early

> on what supports were needed, and it is a lot of work. Micro

businesses

> are a lot of work, but the pay off is in those micro boards is a

life in

> the community. We have to work on our lawmakers, but we also need

to be

> dilegent about looking into the future and what our role is.

Quality of

> life for any of us is not easy to come by. Good luck to all of

us. Cindi

>

[Guest guest]

Ann, you meant a lot to our family in the beginning of our autism

journey. It was comforting to us to have this very smart, young gal

(and I was a child bride, if you you were a prodigy!)helping us and

loving our little boy. Since autism was very rare at the time and

we were all just learning about what was needed, we learned

together. And, since a nonverbal person was rarely if EVER seen in

the community, I don't think anyone could have known.

But one thing I have learned about is quality of life--there are

three things to think about: vocation, living arrangement and

leisure skills and those things that make a life a life--

personhood. We need to worry abot all of those things because one

can beget another.

I have felt slightly foolish about bringing information about arts

here the last few days. Then I heard Justice Ann Burke and Chris

Kennedy (the Kennedy, Kennedy)speak about the Special Olympics

and its 40th anniversary this coming weekend . Kennedy spoke

about the history, etc. of the Special Olympics and then said they

found, through the years, if young people with DDs could compete in

athletic events and train, they could work.....and they could work

ALOT more than was thought before. So, I don't feel so bad about

talking about arts and disabilities because I've always felt those

with DDs can be enriched and empowered by them.

Marie

> >

> > Marie, A few years ago I asked a transition teacher why they

were

> having

> > 18-21 year old people coloring , doing crafts and going to

pumpkin

> farms

> > during a time when transition teachers and voc people should

be

> banging down

> > the doors to get these folks employment . The transition

> teacher , replied

> > the students need to learn how to pass time and this was

considered

> a

> > valuable skill for people when they were at the workshop. It

was

> stated as

> > thought a workshop were the only option and school was

preparing

> people to

> > while away their hours at a workshop. IPADD is for those of us

who

> have

> > older children, so this will go on deaf ears in a way. But

> parents of

> > younger kids. 1-2-3 years old wold be served to have a vision

of

> what kind

> > of life they want for their child, so all the o-t p-t etc is

really

> meant

> > for something. I often find it interesting when I see a

transition

> bus pull

> > up to Starbucks with a group of young adults..I wonder why. Do

we

> assume

> > they will get a job there? do we assume they will be able to

get

> themselves

> > there? do we guess they will be able to afford a $4 for a

> Starbucks coffee.

> > I hope the therapist s we know will be encouraged to get the

> young ones

> > ready as best they can and not give up because this state is

so

> bad. Some

> > folks have no choice but to live here for jobs, family

connections

> > whatever. The therapists comments are chilling and sad. So

maybe

> that

> > should give the rest of us parents of young adults the

opportunity

> to

> > encourage parents of the young kids to get better educated

about

> what the

> > future could hold. I was told " take one day at a time " and

> sometimes that

> > advice can end you up living a nightmare, because we let the

pros

> handle

> > everything. Now that we are , er our kids are older, we are

> empowered.

> > Often time the younger ones arent, and that is the that needs

to

> be

> > empowered with good information about what the future , a

bright

> future

> > could hold. I think about Joe and Marilynn population Hens and

> the solid

> > work they have done with a very challenging situation. They

> realized early

> > on what supports were needed, and it is a lot of work. Micro

> businesses

> > are a lot of work, but the pay off is in those micro boards is

a

> life in

> > the community. We have to work on our lawmakers, but we also

need

> to be

> > dilegent about looking into the future and what our role is.

> Quality of

> > life for any of us is not easy to come by. Good luck to all of

> us. Cindi

> >

>

>

>

>

>

>

[Guest guest]

I have experienced firsthand how important the arts are. It really changed our

core member Jean's life for the better when she moved from a sheltered workshop

which shall remain nameless to Arts of Life.

Marie Grass Amenta <teteme@...> wrote: Ann, you meant a lot

to our family in the beginning of our autism

journey. It was comforting to us to have this very smart, young gal

(and I was a child bride, if you you were a prodigy!)helping us and

loving our little boy. Since autism was very rare at the time and

we were all just learning about what was needed, we learned

together. And, since a nonverbal person was rarely if EVER seen in

the community, I don't think anyone could have known.

But one thing I have learned about is quality of life--there are

three things to think about: vocation, living arrangement and

leisure skills and those things that make a life a life--

personhood. We need to worry abot all of those things because one

can beget another.

I have felt slightly foolish about bringing information about arts

here the last few days. Then I heard Justice Ann Burke and Chris

Kennedy (the Kennedy, Kennedy)speak about the Special Olympics

and its 40th anniversary this coming weekend . Kennedy spoke

about the history, etc. of the Special Olympics and then said they

found, through the years, if young people with DDs could compete in

athletic events and train, they could work.....and they could work

ALOT more than was thought before. So, I don't feel so bad about

talking about arts and disabilities because I've always felt those

with DDs can be enriched and empowered by them.

Marie

> >

> > Marie, A few years ago I asked a transition teacher why they

were

> having

> > 18-21 year old people coloring , doing crafts and going to

pumpkin

> farms

> > during a time when transition teachers and voc people should

be

> banging down

> > the doors to get these folks employment . The transition

> teacher , replied

> > the students need to learn how to pass time and this was

considered

> a

> > valuable skill for people when they were at the workshop. It

was

> stated as

> > thought a workshop were the only option and school was

preparing

> people to

> > while away their hours at a workshop. IPADD is for those of us

who

> have

> > older children, so this will go on deaf ears in a way. But

> parents of

> > younger kids. 1-2-3 years old wold be served to have a vision

of

> what kind

> > of life they want for their child, so all the o-t p-t etc is

really

> meant

> > for something. I often find it interesting when I see a

transition

> bus pull

> > up to Starbucks with a group of young adults..I wonder why. Do

we

> assume

> > they will get a job there? do we assume they will be able to

get

> themselves

> > there? do we guess they will be able to afford a $4 for a

> Starbucks coffee.

> > I hope the therapist s we know will be encouraged to get the

> young ones

> > ready as best they can and not give up because this state is

so

> bad. Some

> > folks have no choice but to live here for jobs, family

connections

> > whatever. The therapists comments are chilling and sad. So

maybe

> that

> > should give the rest of us parents of young adults the

opportunity

> to

> > encourage parents of the young kids to get better educated

about

> what the

> > future could hold. I was told " take one day at a time " and

> sometimes that

> > advice can end you up living a nightmare, because we let the

pros

> handle

> > everything. Now that we are , er our kids are older, we are

> empowered.

> > Often time the younger ones arent, and that is the that needs

to

> be

> > empowered with good information about what the future , a

bright

> future

> > could hold. I think about Joe and Marilynn population Hens and

> the solid

> > work they have done with a very challenging situation. They

> realized early

> > on what supports were needed, and it is a lot of work. Micro

> businesses

> > are a lot of work, but the pay off is in those micro boards is

a

> life in

> > the community. We have to work on our lawmakers, but we also

need

> to be

> > dilegent about looking into the future and what our role is.

> Quality of

> > life for any of us is not easy to come by. Good luck to all of

> us. Cindi

> >

>

>

>

>

>

>

[Guest guest]

Not only is Arts of Life a fabulous arts program, but the focus on

self-determination, group interaction and life skills makes this program one of

the very best I have ever seen.

I am hoping the the Exec. Dir. Fisher can find a way to replicated this

program somewhere in the northern suburbs...it is truly superb.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Re: Bad to worse in the state of Illinois

I have experienced firsthand how important the arts are. It really changed our

core member Jean's life for the better when she moved from a sheltered workshop

which shall remain nameless to Arts of Life.

Marie Grass Amenta <teteme@...> wrote: Ann, you meant a lot to our

family in the beginning of our autism

journey. It was comforting to us to have this very smart, young gal

(and I was a child bride, if you you were a prodigy!)helping us and

loving our little boy. Since autism was very rare at the time and

we were all just learning about what was needed, we learned

together. And, since a nonverbal person was rarely if EVER seen in

the community, I don't think anyone could have known.

But one thing I have learned about is quality of life--there are

three things to think about: vocation, living arrangement and

leisure skills and those things that make a life a life--

personhood. We need to worry abot all of those things because one

can beget another.

I have felt slightly foolish about bringing information about arts

here the last few days. Then I heard Justice Ann Burke and Chris

Kennedy (the Kennedy, Kennedy)speak about the Special Olympics

and its 40th anniversary this coming weekend . Kennedy spoke

about the history, etc. of the Special Olympics and then said they

found, through the years, if young people with DDs could compete in

athletic events and train, they could work.....and they could work

ALOT more than was thought before. So, I don't feel so bad about

talking about arts and disabilities because I've always felt those

with DDs can be enriched and empowered by them.

Marie

> >

> > Marie, A few years ago I asked a transition teacher why they

were

> having

> > 18-21 year old people coloring , doing crafts and going to

pumpkin

> farms

> > during a time when transition teachers and voc people should

be

> banging down

> > the doors to get these folks employment . The transition

> teacher , replied

> > the students need to learn how to pass time and this was

considered

> a

> > valuable skill for people when they were at the workshop. It

was

> stated as

> > thought a workshop were the only option and school was

preparing

> people to

> > while away their hours at a workshop. IPADD is for those of us

who

> have

> > older children, so this will go on deaf ears in a way. But

> parents of

> > younger kids. 1-2-3 years old wold be served to have a vision

of

> what kind

> > of life they want for their child, so all the o-t p-t etc is

really

> meant

> > for something. I often find it interesting when I see a

transition

> bus pull

> > up to Starbucks with a group of young adults..I wonder why. Do

we

> assume

> > they will get a job there? do we assume they will be able to

get

> themselves

> > there? do we guess they will be able to afford a $4 for a

> Starbucks coffee.

> > I hope the therapist s we know will be encouraged to get the

> young ones

> > ready as best they can and not give up because this state is

so

> bad. Some

> > folks have no choice but to live here for jobs, family

connections

> > whatever. The therapists comments are chilling and sad. So

maybe

> that

> > should give the rest of us parents of young adults the

opportunity

> to

> > encourage parents of the young kids to get better educated

about

> what the

> > future could hold. I was told " take one day at a time " and

> sometimes that

> > advice can end you up living a nightmare, because we let the

pros

> handle

> > everything. Now that we are , er our kids are older, we are

> empowered.

> > Often time the younger ones arent, and that is the that needs

to

> be

> > empowered with good information about what the future , a

bright

> future

> > could hold. I think about Joe and Marilynn population Hens and

> the solid

> > work they have done with a very challenging situation. They

> realized early

> > on what supports were needed, and it is a lot of work. Micro

> businesses

> > are a lot of work, but the pay off is in those micro boards is

a

> life in

> > the community. We have to work on our lawmakers, but we also

need

> to be

> > dilegent about looking into the future and what our role is.

> Quality of

> > life for any of us is not easy to come by. Good luck to all of

> us. Cindi

> >

>

>

>

>

>

>

[Guest guest]

My son registered to vote IMMEDIATELY, he wanted to! He was

so excited to be able to vote!!! I signed him up BEFORE the teachers

realized he was 21! I also took him down for a state ID. Some of

these things no matter how small they may seem are big for these

young adults.

We are so beat down by the 'system' that we sometimes fail to even

try but we cannot give up!!

I am really appauled at the State of Illinois for not restoring the

2%. We all are working so hard, trying to point out how important

these things are to our young men and women but no body listens?!?!?!

Why dont these pompus self gratifying politicians take a cut for a

change?!?!?! after all they surely are NOT working for us if they

are not acting on things as we would like.

It is time we start dethroneing a few!! They need to start at the

top with Blagoyavich!!! Then maybe they will listen!!!!!

I am getting so tired of fighting for such simple things!!

Kathy

>

> From: Ellen Bronfeld <egskb@...>

> Subject: Re: Re: Bad to worse in the state of Illinois

> IPADDUnite

> Date: Wednesday, July 16, 2008, 10:35 PM

>

>

>

>

>

>

> I hear you, Liz...It just shouldn't be this hard!

> I do think that at least one reason that people with disabilities

are disenfranchised is because they are thought of us non-

voters.. .we can change that by registering them to vote and letting

our elected officials know that the votes of our sons and daughters

WILL matter!

> At least in my voting precinct, the election officials bend over

backwards to accomodate my son and there is never any problem with my

assisting him in any way. Now, with early voting, it is easier than

ever...no lines, no waits...

> Ellen

> Ellen Garber Bronfeld

> egskbsbcglobal (DOT) net

> Re: Bad to worse in the state of Illinois

>

> Ellen,

>

> Why doesn't this surprise me? Is it because some people with

> disabilities aren't registered voters? That they don't matter to

> the " powers that be " ?

>

> Having dealt with issues since was born, schooling, housing,

> behavior difficulties, medical issues, behavior issues, work, now

> group home issues & (did I mention behavior problems???) I know I

> can't give up, but I'm so tired of fighting the fight, I'd just

like

> to have a life....at least for a week. :0)

>

> Liz

>

>

[Guest guest]

After you become guardian of the person and estate is that person still eligible

to vote? I did not have my son register because I am his guardian. Does anyone

know the answer. He just received a notice to serve on a jury. I called the

and I have to provide the court papers saying he is disabled so he does not have

to report.

Maureen Hartnett

Kathy <kathyb54@...> wrote: My son

registered to vote IMMEDIATELY, he wanted to! He was

so excited to be able to vote!!! I signed him up BEFORE the teachers

realized he was 21! I also took him down for a state ID. Some of

these things no matter how small they may seem are big for these

young adults.

We are so beat down by the 'system' that we sometimes fail to even

try but we cannot give up!!

I am really appauled at the State of Illinois for not restoring the

2%. We all are working so hard, trying to point out how important

these things are to our young men and women but no body listens?!?!?!

Why dont these pompus self gratifying politicians take a cut for a

change?!?!?! after all they surely are NOT working for us if they

are not acting on things as we would like.

It is time we start dethroneing a few!! They need to start at the

top with Blagoyavich!!! Then maybe they will listen!!!!!

I am getting so tired of fighting for such simple things!!

Kathy

>

> From: Ellen Bronfeld <egskb@...>

> Subject: Re: Re: Bad to worse in the state of Illinois

> IPADDUnite

> Date: Wednesday, July 16, 2008, 10:35 PM

>

>

>

>

>

>

> I hear you, Liz...It just shouldn't be this hard!

> I do think that at least one reason that people with disabilities

are disenfranchised is because they are thought of us non-

voters.. .we can change that by registering them to vote and letting

our elected officials know that the votes of our sons and daughters

WILL matter!

> At least in my voting precinct, the election officials bend over

backwards to accomodate my son and there is never any problem with my

assisting him in any way. Now, with early voting, it is easier than

ever...no lines, no waits...

> Ellen

> Ellen Garber Bronfeld

> egskbsbcglobal (DOT) net

> Re: Bad to worse in the state of Illinois

>

> Ellen,

>

> Why doesn't this surprise me? Is it because some people with

> disabilities aren't registered voters? That they don't matter to

> the " powers that be " ?

>

> Having dealt with issues since was born, schooling, housing,

> behavior difficulties, medical issues, behavior issues, work, now

> group home issues & (did I mention behavior problems???) I know I

> can't give up, but I'm so tired of fighting the fight, I'd just

like

> to have a life....at least for a week. :0)

>

> Liz

>

>

[Guest guest]

When Adam became old enough to vote, we registered . He is his own

guardian.. However several of my friends who have adult children with Down

Syndrome , have guardianship, have had their children register and vote. I

know the IPADD hostess will do some info on this early in the fall. However

no one questions us when we go to vote. When he registered no one asked if

he is his own guardian. When our family votes it is a family affair. Art

has to help me because I am blind, and Adam and I sign a release that allows

Art (husband, dad) to help us. We keep it very simple for Adam. " This

person who wants to be president cares about people with disabilities. " It

is tough for those of us who do not have cognitive challenges to know who to

vote for, and who will play politics with our lives. Good luck to all of

us. Cindi

t

[Guest guest]

YES, he is still eligible to register to vote. Some states restrict that right

where guardianship is concerned, but not Illinois. We registered when our

daughter got her IL state ID card at the Secretary of State's office and it was

simple.

L.

Re: Bad to worse in the state of Illinois

>

> Ellen,

>

> Why doesn't this surprise me? Is it because some people with

> disabilities aren't registered voters? That they don't matter to

> the " powers that be " ?

>

> Having dealt with issues since was born, schooling, housing,

> behavior difficulties, medical issues, behavior issues, work, now

> group home issues & (did I mention behavior problems???) I know I

> can't give up, but I'm so tired of fighting the fight, I'd just

like

> to have a life....at least for a week. :0)

>

> Liz

>

>

[Guest guest]

I love that you called us 'hostesses'. You're showing your age, my dear!

Re: Re: Bad to worse in the state of Illinois

When Adam became old enough to vote, we registered . He is his own

guardian.. However several of my friends who have adult children with Down

Syndrome , have guardianship, have had their children register and vote. I

know the IPADD hostess will do some info on this early in the fall. However

no one questions us when we go to vote. When he registered no one asked if

he is his own guardian. When our family votes it is a family affair. Art

has to help me because I am blind, and Adam and I sign a release that allows

Art (husband, dad) to help us. We keep it very simple for Adam. " This

person who wants to be president cares about people with disabilities. " It

is tough for those of us who do not have cognitive challenges to know who to

vote for, and who will play politics with our lives. Good luck to all of

us. Cindi

t

[Guest guest]

Hi Cindi, I met you at the Aces$ meeting. My son is also DS. is 27. How

old is your son? Do you go to any support groups? I live in Elmhurst and would

love to go to a support group with other parents. I learn so much from other

parents. I wish I had more time to speak to you and your husband.

Shirley

Cindi Swanson <cbswanson@...> wrote:

When Adam became old enough to vote, we registered . He is his own

guardian.. However several of my friends who have adult children with Down

Syndrome , have guardianship, have had their children register and vote. I

know the IPADD hostess will do some info on this early in the fall. However

no one questions us when we go to vote. When he registered no one asked if

he is his own guardian. When our family votes it is a family affair. Art

has to help me because I am blind, and Adam and I sign a release that allows

Art (husband, dad) to help us. We keep it very simple for Adam. " This

person who wants to be president cares about people with disabilities. " It

is tough for those of us who do not have cognitive challenges to know who to

vote for, and who will play politics with our lives. Good luck to all of

us. Cindi

t

[Guest guest]

Nice to have met you. E mail me off line and we can talk. Cindi