Re: Illinois Elephant in the Room

[Guest guest]

Thanks, Denver...

We have a good strong advocate for many of these initiatives...Do you remember

Allan Bergman? I believe he was with the Arc in your area at one time.

He is Exec. Director of one of the biggest Chicago agencies and he is assuming

some responsibilities on various boards and committees to position himself as an

advocate for community based supports and services.

Ellen

Ellen Garber Bronfeld

egskb@...

Illinois " Elephant " in the Room

In a message dated 12/24/2007 3:53:46 A.M. Mountain Standard Time,

IPADDUnite writes:

A companion problem in Illinois, along with the lack of funding to

accomodate all who need and want supports and services is how the state spends

it's

disability dollars.

==================

Here is where Colorado may provide a model, at least in HOW its limited

dollars are spent.

We have less than 5% of our folks living in " institutions, " and almost all

of those " institutions " are in some way in the community (satellite homes,

etc.), but are remnants of when we had three big state institutions. These are

typically adjudicated folks, assigned by the court to the state because of

sexual or criminal actions.

Otherwise, folks are in smaller settings, such as my son, in a " Host Home. "

We do have a few ICF/MR's (I believe these would be the same as your

ICF/DD's) and recently there was a move to increase the number of ICF/MR's,

which

was strongly opposed by parents. Interestingly, it was the analyst for our

legislative " Joint Budget Committee - who control all our state dollars - "

who

convinced the legislators that ICF/MR's are neither a good thing nor are they

a good expenditure of state dollars. This was most interesting, as it

appears that the legislators are smarter and more knowledgeable then our state

and

regional DD administrators.

We have folks with very, very high needs supported in the community, doing

this successfully. It can be done.

When folks were being moved out of our state institutions, many years back,

there was MUCH gnashing of teeth by some parents, but it all finally worked

out pretty well. Certainly not perfectly, but it is better than the

institutions.

We have just finished a round of assessments with a new tool put out by

AIDDD (formerly AAMR) called the SIS. This levels of need identified by the

SIS

will form the basis of future funding levels for all of our DD waivered

folks. You can learn about the SIS at:

_http://siswebsite.org/_ (http://siswebsite.org/)

It is being adopted nationally by many, many states and other organizations.

http://members.aol.com/dnvrfox

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[Guest guest]

There was a pro institution article in the Chicago Trib in the past few

days. Did any of you read it? Nora

In a message dated 12/24/2007 6:01:44 A.M. Central Standard Time,

DnvrFox@... writes:

In a message dated 12/24/2007 3:53:46 A.M. Mountain Standard Time,

_IPADDUnite@groIPADDUn_ (mailto:IPADDUnite ) writes:

A companion problem in Illinois, along with the lack of funding to

accomodate all who need and want supports and services is how the state

spends it's

disability dollars.

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[Guest guest]

Yes, I did read it, Nora.

That is in part why I went on my long rant about the elephant in the room! We

really need to get all groups together to work on solutions to the problems in

this state.

Good for you, Nora for forming a not-for-profit and for being interested in

working on political advocacy!

Maybe you should consider talking to Tony auski, Exec. Dir. of the Arc of

Illinois, to become a board member.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Illinois " Elephant " in the Room

There was a pro institution article in the Chicago Trib in the past few

days. Did any of you read it? Nora

In a message dated 12/24/2007 6:01:44 A.M. Central Standard Time,

DnvrFox@... writes:

In a message dated 12/24/2007 3:53:46 A.M. Mountain Standard Time,

_IPADDUnite@groIPADDUn_ (mailto:IPADDUnite ) writes:

A companion problem in Illinois, along with the lack of funding to

accomodate all who need and want supports and services is how the state

spends it's

disability dollars.

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

Thanks Ellen. I don't think I could add one more volunteer position right

now. Maybe some day Arc will want to partner with us like they do with the

Family Support Network.

I think you should turn your rant into a letter to the editor. I think they

totally missed the point with that article. Nora

In a message dated 12/25/2007 8:01:30 P.M. Central Standard Time,

egskb@... writes:

Yes, I did read it, Nora.

That is in part why I went on my long rant about the elephant in the room!

We really need to get all groups together to work on solutions to the problems

in this state.

Good for you, Nora for forming a not-for-profit and for being interested in

working on political advocacy!

Maybe you should consider talking to Tony auski, Exec. Dir. of the Arc

of Illinois, to become a board member.

Ellen

Ellen Garber Bronfeld

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

Funny...I was thinking I should do the same...a letter to the editor!

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Illinois " Elephant " in the Room

Thanks Ellen. I don't think I could add one more volunteer position right

now. Maybe some day Arc will want to partner with us like they do with the

Family Support Network.

I think you should turn your rant into a letter to the editor. I think they

totally missed the point with that article. Nora

In a message dated 12/25/2007 8:01:30 P.M. Central Standard Time,

egskb@... writes:

Yes, I did read it, Nora.

That is in part why I went on my long rant about the elephant in the room!

We really need to get all groups together to work on solutions to the problems

in this state.

Good for you, Nora for forming a not-for-profit and for being interested in

working on political advocacy!

Maybe you should consider talking to Tony auski, Exec. Dir. of the Arc

of Illinois, to become a board member.

Ellen

Ellen Garber Bronfeld

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

I read the article in Sunday, December 23s Tribune titled, In caring for

disabled, families know best by Choslovsky billychos@... and

then Ellen's response post.

I concur Ellen. You should write a response to the editor and copy . I

suggest you post your letter to IPADDUnite for those of us who would like to add

our names and addresses. is correct. Families do know best. He seemed to

indicated in his article that those who advocate to close big institutions are

not people who have a family member with a disability. He also seemed to

indicate that persons who rely on intensive supports cannot be cared for at home

and need institutions. As the parent of a son who needs assistance to eat,

bathe, dress and toilet as well AND requires 24 hour supervision AND skilled

coordination for his complex medical care, I can heartily disagree with him.

Both Josh and I would be happy to add our names to your letter. There are so

many of us who share your intentions, Ellen but for myriad reasons cannot write

the letter. Please let us join you by adding our names. For me, I have so little

uninterrupted time and three surgical procedures for Josh to coordinate in

January and February.

Thank you, Ellen.

Pam and Josh

Western Springs, IL

--

Strengthening the Family's Voice of AAC /

Check out our FLICKR

http://www.flickr.com/photos/aacfamily/

--------- Re: Illinois " Elephant " in the Room

Thanks Ellen. I don't think I could add one more volunteer position right

now. Maybe some day Arc will want to partner with us like they do with the

Family Support Network.

I think you should turn your rant into a letter to the editor. I think they

totally missed the point with that article. Nora

In a message dated 12/25/2007 8:01:30 P.M. Central Standard Time,

egskb@... writes:

Yes, I did read it, Nora.

That is in part why I went on my long rant about the elephant in the room!

We really need to get all groups together to work on solutions to the problems

in this state.

Good for you, Nora for forming a not-for-profit and for being interested in

working on political advocacy!

Maybe you should consider talking to Tony auski, Exec. Dir. of the Arc

of Illinois, to become a board member.

Ellen

Ellen Garber Bronfeld

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

Thanks, Pam...I will probably get a large mug of tea and some chocolates later

this evening and get to work on taking apart my rant and making it into a

letter.

I think signatures and addresses would be a great idea...

Thanks for your support. I am sorry to hear that Josh will be undergoing

surgery soon! Please keep us updated so we can add our good wishes and thoughts

for a speedy recovery.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Illinois " Elephant " in the Room

Thanks Ellen. I don't think I could add one more volunteer position right

now. Maybe some day Arc will want to partner with us like they do with the

Family Support Network.

I think you should turn your rant into a letter to the editor. I think they

totally missed the point with that article. Nora

In a message dated 12/25/2007 8:01:30 P.M. Central Standard Time,

egskb@... writes:

Yes, I did read it, Nora.

That is in part why I went on my long rant about the elephant in the room!

We really need to get all groups together to work on solutions to the problems

in this state.

Good for you, Nora for forming a not-for-profit and for being interested in

working on political advocacy!

Maybe you should consider talking to Tony auski, Exec. Dir. of the Arc

of Illinois, to become a board member.

Ellen

Ellen Garber Bronfeld

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

I would love to sign this letter as well.

and Joe Finato

>

> Thanks, Pam...I will probably get a large mug of tea and some

chocolates later this evening and get to work on taking apart my rant

and making it into a letter.

> I think signatures and addresses would be a great idea...

> Thanks for your support. I am sorry to hear that Josh will be

undergoing surgery soon! Please keep us updated so we can add our

good wishes and thoughts for a speedy recovery.

> Ellen

>

> Ellen Garber Bronfeld

> egskb@...

> Re: Illinois " Elephant " in the Room

>

> Thanks Ellen. I don't think I could add one more volunteer

position right

> now. Maybe some day Arc will want to partner with us like they do

with the

> Family Support Network.

>

> I think you should turn your rant into a letter to the editor. I

think they

> totally missed the point with that article. Nora

>

> In a message dated 12/25/2007 8:01:30 P.M. Central Standard Time,

> egskb@... writes:

>

> Yes, I did read it, Nora.

> That is in part why I went on my long rant about the elephant in

the room!

> We really need to get all groups together to work on solutions to

the problems

> in this state.

> Good for you, Nora for forming a not-for-profit and for being

interested in

> working on political advocacy!

> Maybe you should consider talking to Tony auski, Exec. Dir.

of the Arc

> of Illinois, to become a board member.

> Ellen

> Ellen Garber Bronfeld

>

> **************************************See AOL's top rated recipes

> (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

>

>

[Guest guest]

Hi Pam, , and everyone:

Well...sometimes when you sit down to write a letter, you think you know where

it is going but then it morphs into something else.

I am sending you the letter that I will submit to the Tribune and that I will

also send to the Governor and the four legislative leaders (, Madigan,

Cross and ). I will also be emailing this to my local legislators as

well.

Tax increases are pretty controversial and I would recommend if anyone happens

to agree with me that they write their local legislators as well as the

leadership...it doesn't have to be a long letter...just a few words to support

your position...

Needless to say, my letter is my own personal point of view and does NOT

represent IPADDU membership in any way.

By the way, one of the reasons my letter changed focus is that I got some emails

letting me know that other big agencies will be responding to the Dec. 23rd

letter.

I didn't think competing with their letters would be useful.

Ellen

For those of you with a loved one with a disability, read on. For those of you

who are realistic enough to know that at any time you or someone you care about

can become an individual with a disability, read on. For those of you who care

about how your state tax dollars are spent, read on.

The state of Illinois' budget is being held hostage by Governor Blagojevich and

the top four legislative leaders. Amazingly, there is little outrage from the

citizens of Illinois who are paying the salaries of five state employees who

have not completed a key job assignment for 2007, the completion of the state

budget. In any other business, employees who do not do their work find

themselves out of a job. Shouldn't we be holding state employees, who you and I

are paying, accountable for doing their jobs?

Doesn't this bother anyone?

I have an adult son with a disability. I am hearing from multiple agencies who

depend on state dollars that they are not getting reimbursed from the state in a

timely manner for their work with some of our most vulnerable citizens. The

state is more than two months behind in payments to community agencies who

provide critical supports and services to individuals with developmental

disabilities. It is bad enough that agencies providing supports and services in

the community to individuals with disabilities are underfunded to begin with.

Illinois does not provide adequate dollars to accommodate all individuals with

disabilities who need and want supports and services, and especially neglected

are individuals who prefer to live, work and play in their own communities.

There is no question that we need revenue enhancement in Illinois. I would agree

to casinos because I feel the situation has gotten desperate, but to balance the

state budget with gaming dollars seems a giant step down in social progress. It

is truly regressive revenue enhancement. The elephant in the legislative

chambers is taxes. We need to raise taxes and we need to do it sooner than

later.

Governor Blagojevich made election promises that were unrealistic given our

current tax base. The state cannot balance the budget and the state cannot meet

the needs of some of its' most vulnerable citizens. It is time for our employees

to do their jobs.

I call on those who have loved ones who have a disability, those who know that

anyone can become disabled at anytime, and everyone else who thinks that

employees should what it takes to do their jobs or suffer the loss of their

jobs, to support raising taxes. I also encourage you to become mad, really mad

at the people we are paying who are failing at their jobs.

Ellen Garber Bronfeld

3035 KayJay Drive

Northbrook, Illinois 60062

847/480-1345

egskb@...

Ellen Garber Bronfeld

egskb@...

Re: Illinois " Elephant " in the Room

Thanks Ellen. I don't think I could add one more volunteer position right

now. Maybe some day Arc will want to partner with us like they do with the

Family Support Network.

I think you should turn your rant into a letter to the editor. I think they

totally missed the point with that article. Nora

In a message dated 12/25/2007 8:01:30 P.M. Central Standard Time,

egskb@... writes:

Yes, I did read it, Nora.

That is in part why I went on my long rant about the elephant in the room!

We really need to get all groups together to work on solutions to the problems

in this state.

Good for you, Nora for forming a not-for-profit and for being interested in

working on political advocacy!

Maybe you should consider talking to Tony auski, Exec. Dir. of the Arc

of Illinois, to become a board member.

Ellen

Ellen Garber Bronfeld

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

Ellen, it's a great letter and I understand the morph process. : )

It's good to hear that some of IL's advocacy organizations are planning a

response to the Trib article. More is better. Can IPAADU " unite " and respond as

a group? Can you revise your IPAADU post into

a letter and let those of us who are unable to write a letter add our names?

I know we are a young group who has yet to evolve to it's political strength but

isn't it time to start flexing and building our collective muscles?

We are parents of adults with developmental disabilities living in Illinois. If

not us, then who?

Pam

--

Strengthening the Family's Voice of AAC /

Check out our FLICKR

http://www.flickr.com/photos/aacfamily/

--------- Re: Illinois " Elephant " in the Room

Thanks Ellen. I don't think I could add one more volunteer position right

now. Maybe some day Arc will want to partner with us like they do with the

Family Support Network.

I think you should turn your rant into a letter to the editor. I think they

totally missed the point with that article. Nora

In a message dated 12/25/2007 8:01:30 P.M. Central Standard Time,

egskb@... writes:

Yes, I did read it, Nora.

That is in part why I went on my long rant about the elephant in the room!

We really need to get all groups together to work on solutions to the problems

in this state.

Good for you, Nora for forming a not-for-profit and for being interested in

working on political advocacy!

Maybe you should consider talking to Tony auski, Exec. Dir. of the Arc

of Illinois, to become a board member.

Ellen

Ellen Garber Bronfeld

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

Great idea Pam and Ellen I would sign as well. Nora

In a message dated 12/26/2007 11:45:29 A.M. Central Standard Time,

egskb@... writes:

Thanks, Pam...I will probably get a large mug of tea and some chocolates

later this evening and get to work on taking apart my rant and making it into a

letter.

I think signatures and addresses would be a great idea...

Thanks for your support. I am sorry to hear that Josh will be undergoing

surgery soon! Please keep us updated so we can add our good wishes and thoughts

for a speedy recovery.

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

I am not sure how to collect names to add to the letter...

any suggestions?

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Illinois " Elephant " in the Room

Thanks Ellen. I don't think I could add one more volunteer position right

now. Maybe some day Arc will want to partner with us like they do with the

Family Support Network.

I think you should turn your rant into a letter to the editor. I think they

totally missed the point with that article. Nora

In a message dated 12/25/2007 8:01:30 P.M. Central Standard Time,

egskb@... writes:

Yes, I did read it, Nora.

That is in part why I went on my long rant about the elephant in the room!

We really need to get all groups together to work on solutions to the problems

in this state.

Good for you, Nora for forming a not-for-profit and for being interested in

working on political advocacy!

Maybe you should consider talking to Tony auski, Exec. Dir. of the Arc

of Illinois, to become a board member.

Ellen

Ellen Garber Bronfeld

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

That's and interesting question. An easy way would be for each of us

to write a short but sweet letter supporting your letter and sending

it to you so it could be included when it's mailed out. I know there

are websites where someone can create a 'petition' and then people

can sign it, but unfortunately, I no longer have links to them.

>

> I am not sure how to collect names to add to the letter...

> any suggestions?

> Ellen

> Ellen Garber Bronfeld

> egskb@...

> Re: Illinois " Elephant " in the Room

>

> Thanks Ellen. I don't think I could add one more volunteer

position right

> now. Maybe some day Arc will want to partner with us like they do

with the

> Family Support Network.

>

> I think you should turn your rant into a letter to the editor. I

think they

> totally missed the point with that article. Nora

>

> In a message dated 12/25/2007 8:01:30 P.M. Central Standard Time,

> egskb@... writes:

>

> Yes, I did read it, Nora.

> That is in part why I went on my long rant about the elephant in

the room!

> We really need to get all groups together to work on solutions to

the problems

> in this state.

> Good for you, Nora for forming a not-for-profit and for being

interested in

> working on political advocacy!

> Maybe you should consider talking to Tony auski, Exec. Dir.

of the Arc

> of Illinois, to become a board member.

> Ellen

> Ellen Garber Bronfeld

>

> **************************************See AOL's top rated recipes

> (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

>

>

[Guest guest]

Ellen, I found some online petition sites that could be looked into.

Here are their addresses:

http://www.ipetitions.com/start-petition/ or

http://www.thepetitionsite.com/?s_kwcid=online%20petitions|825962550

> >

> > I am not sure how to collect names to add to the letter...

> > any suggestions?

> > Ellen

> > Ellen Garber Bronfeld

> > egskb@

> > Re: Illinois " Elephant " in the Room

> >

> > Thanks Ellen. I don't think I could add one more volunteer

> position right

> > now. Maybe some day Arc will want to partner with us like they

do

> with the

> > Family Support Network.

> >

> > I think you should turn your rant into a letter to the editor.

I

> think they

> > totally missed the point with that article. Nora

> >

> > In a message dated 12/25/2007 8:01:30 P.M. Central Standard

Time,

> > egskb@ writes:

> >

> > Yes, I did read it, Nora.

> > That is in part why I went on my long rant about the elephant

in

> the room!

> > We really need to get all groups together to work on solutions

to

> the problems

> > in this state.

> > Good for you, Nora for forming a not-for-profit and for being

> interested in

> > working on political advocacy!

> > Maybe you should consider talking to Tony auski, Exec. Dir.

> of the Arc

> > of Illinois, to become a board member.

> > Ellen

> > Ellen Garber Bronfeld

> >

> > **************************************See AOL's top rated

recipes

> > (http://food.aol.com/top-rated-recipes?

NCID=aoltop00030000000004)

> >

> >