Re: Institution vs. ICF-DD

[Guest guest]

last night at the hearing on Howe, there were parents trying to save Howe

because it is their children's community. in fact SOME of those people

actually were from the south suburbs, so I guess in a way that works. The

families reported their children (most in late 40s early 50s) go off campus

again into the community to a workshop. An ICFDD is I understand a nursing

home model, at least based on its funding plan. I would suppose if a person

wanted to look at it one way the individuals living at ICFDD are in a

community. community

My own concept is for my son, he has gone to the Naperville public library

since he was too little to know what a book is, and through his high school

transition I wanted him to cement a relationship with that community

institution. He walks from our house to the barber shop and all those

people know him and in his community look after him. (At least that is what

I hope)

After hearing the folks last night at the Howe hearing maintaining their

children are in their community, I am not sure there is a text book

offering. Right now a state op is NOT community for my son, so I am seeing

community may be in the eyes of the beholder. I am sure more well read

people on OPADD have a definition on this . At 6 a. m., I am spinning

from the Howe hearing last night, this is what I can come up with.

Where ever it is, I want my son fully engaged in life, able to make choice,

doing all the things he can and wants to do. Safety is a big factor, but the

dignity of risk also plays a role in his life.

Cindi

[Guest guest]

I like your idea of " dignity of risk " Cindi. It is a good conceptual framework

for those of us who believe our children who happen to have disabilities

shouldn't be infantalized and taken care of...

I too was at the hearing. I don't have the time this morning to " pontificate "

and I am also still absorbing and processing the experience. Here are two

things I thought about upon waking this morning...

1. Before we rally against something we need to investigate charges and

allegations and try, to the best of our ability to familiarize ourselves with

the facts.

2. Before we rally against something we also need to go see it, touch it, feel

it, in some way.

Obviously, if there is something overseas and far away, (such as, Darfur) that

might not be possible, but if it is within our ability to do so, we should go

and see what it is we are against...

That said, there is a difference between philosophical discussion and practical

application of a belief system...

More later...

By the way, for anyone who is now puzzled...I am still in favor of closure of

Howe...I have some thoughts about how that could be operationalized in a little

different way, perhaps.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Institution vs. ICF-DD

last night at the hearing on Howe, there were parents trying to save Howe

because it is their children's community. in fact SOME of those people

actually were from the south suburbs, so I guess in a way that works. The

families reported their children (most in late 40s early 50s) go off campus

again into the community to a workshop. An ICFDD is I understand a nursing

home model, at least based on its funding plan. I would suppose if a person

wanted to look at it one way the individuals living at ICFDD are in a

community. community

My own concept is for my son, he has gone to the Naperville public library

since he was too little to know what a book is, and through his high school

transition I wanted him to cement a relationship with that community

institution. He walks from our house to the barber shop and all those

people know him and in his community look after him. (At least that is what

I hope)

After hearing the folks last night at the Howe hearing maintaining their

children are in their community, I am not sure there is a text book

offering. Right now a state op is NOT community for my son, so I am seeing

community may be in the eyes of the beholder. I am sure more well read

people on OPADD have a definition on this . At 6 a. m., I am spinning

from the Howe hearing last night, this is what I can come up with.

Where ever it is, I want my son fully engaged in life, able to make choice,

doing all the things he can and wants to do. Safety is a big factor, but the

dignity of risk also plays a role in his life.

Cindi

[Guest guest]

I agree,Ellen. though I wasn't at the Howe meeting I understand what you mean

because I was at the Town hall meeting in Wheaton to support Blueprint and there

were more parents protesting the closing of institutions where their 40-50

adults are cared for. It prompted me to speak up (along with your encouragement)

even though I hadn't prepared anything. I think it all comes down to what

supports are in place. I am sure it is difficult for 77 year old parents to

imagine what kind of supports their loved ones can have in the community just as

I did not push for the  supports in school 15 years ago for Quentin that

preschoolers are getting now because I didn't know how.

Thais

--

WOW! Homepage (http://www.wowway.com)

[Guest guest]

Hi Liz:

ICF-DD's are considered institutional by those who have a community bias and

they are viewed as group homes by others. Those who believe individuals should

be living in their own communities in small settings usually also think that

individuals with disabilities should be able to choose their roommates, which

doesn't occur in ICF's and that everyone should have their own bedroom, which

doesn't, to my knowledge, usually occur in ICF's.

Ellen

Ellen Garber Bronfeld

egskb@...

Institution vs. ICF-DD

I should know the answer to this, but I'm going to ask it anyway.

Just what exactly is community living considered?

Are 16 bed + ICF-DD's considered as community living? Or are they

considered institutions or neither?

Liz

[Guest guest]

The LIgas lawsuit considers ICFDD's with more than 8 people living there

to be an institution.

From: IPADDUnite [mailto:IPADDUnite ] On

Behalf Of pacmomma2

Sent: Thursday, December 11, 2008 11:39 PM

IPADDUnite

Subject: Institution vs. ICF-DD

I should know the answer to this, but I'm going to ask it anyway.

Just what exactly is community living considered?

Are 16 bed + ICF-DD's considered as community living? Or are they

considered institutions or neither?

Liz

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[Guest guest]

Interesting remarks from Ellen.  To her list, I'd add:

3--Before we rally against something, we need to have viable alternatives that

can be activated before or as the disliked concept closes. 

What concerns me about closing these larger facilities is that, right now, we

are woefully short of housing options.  I sure wouldn't want to move all the

folks out of large facilities, only to need to move them again in a short time

frame, because the move was poorly planned or the options were very limited.

-Gail

From: ELLEN BRONFELD <egskb@...>

Subject: Re: Institution vs. ICF-DD

IPADDUnite

Date: Friday, December 12, 2008, 8:12 AM

I like your idea of " dignity of risk " Cindi. It is a good

conceptual framework for those of us who believe our children who happen to have

disabilities shouldn't be infantalized and taken care of...

I too was at the hearing. I don't have the time this morning to " pontificate "

and I am also still absorbing and processing the experience. Here are two

things I thought about upon waking this morning...

1. Before we rally against something we need to investigate charges and

allegations and try, to the best of our ability to familiarize ourselves with

the facts.

2. Before we rally against something we also need to go see it, touch it, feel

it, in some way.

Obviously, if there is something overseas and far away, (such as, Darfur) that

might not be possible, but if it is within our ability to do so, we should go

and see what it is we are against...

That said, there is a difference between philosophical discussion and practical

application of a belief system...

More later...

By the way, for anyone who is now puzzled...I am still in favor of closure of

Howe...I have some thoughts about how that could be operationalized in a little

different way, perhaps.

Ellen

Ellen Garber Bronfeld

egskbsbcglobal (DOT) net

Re: Institution vs. ICF-DD

last night at the hearing on Howe, there were parents trying to save Howe

because it is their children's community. in fact SOME of those people

actually were from the south suburbs, so I guess in a way that works. The

families reported their children (most in late 40s early 50s) go off campus

again into the community to a workshop. An ICFDD is I understand a nursing

home model, at least based on its funding plan. I would suppose if a person

wanted to look at it one way the individuals living at ICFDD are in a

community.

My own concept is for my son, he has gone to the Naperville public library

since he was too little to know what a book is, and through his high school

transition I wanted him to cement a relationship with that community

institution. He walks from our house to the barber shop and all those

people know him and in his community look after him. (At least that is what

I hope)

After hearing the folks last night at the Howe hearing maintaining their

children are in their community, I am not sure there is a text book

offering. Right now a state op is NOT community for my son, so I am seeing

community may be in the eyes of the beholder. I am sure more well read

people on OPADD have a definition on this . At 6 a. m., I am spinning

from the Howe hearing last night, this is what I can come up with.

Where ever it is, I want my son fully engaged in life, able to make choice,

doing all the things he can and wants to do. Safety is a big factor, but the

dignity of risk also plays a role in his life.

Cindi

[Guest guest]

I'll probably catch some flak for this, but here goes anyway. I've heard a

little bit about the Howe meeting and also the Wheaton townhall where apparently

folks were advocating in favor of keeping Shapiro (another staterun institution)

open. Like you Ellen and Thais and others, I totally get that if I'm 77 years

old, and my daughter/son has been living at state/federal expense in an

institution for 30 years or so

and they seem reasonably or completely happy/content in that setting, etc...that

I'd be LOATHE to see a bunch of younger parents lobbying for closure of said

institution.

That being said (and here's the part that might offend some) I'm totally and

completely OUTRAGED that these families have the gall to suggest that their

adult children are ENTITLED to continue to receive yearly supports, at taxpayer

expense, of on average $140,000 (or whatever the average is currently) a year

per person --- WHEN some 15,000 OTHERS REMAIN ON A WAITING LIST FOR ANY SERVICES

AT ALL? That's the part I do not get. My daughter gets SSI and $1,200/year

in respite reimbursements. That's it. And she's got classic autism, seizures,

behaviors up the wazoo. Don't get me wrong, we love her to pieces and want to

keep her at home or closeby for as long as humanly possible, and we're blessed

with a lot of things that others are not.

But where do these parents get off just insisting that the rest of us continue

to wait and wait -- and pay for the high cost of institutionalizing THEIR loved

ones??

If some of them are also out there advocating as vocally in favor of providing

supports for ALL, I would be as pissed off. But are they? I don't think so. I

think it's just everyone out for themselves. I hate it.

Sorry for the vent, and if anyone wants to weigh in to correct me or educate me,

feel free.

Laurie

Re: Institution vs. ICF-DD

last night at the hearing on Howe, there were parents trying to save Howe

because it is their children's community. in fact SOME of those people

actually were from the south suburbs, so I guess in a way that works. The

families reported their children (most in late 40s early 50s) go off campus

again into the community to a workshop. An ICFDD is I understand a nursing

home model, at least based on its funding plan. I would suppose if a person

wanted to look at it one way the individuals living at ICFDD are in a

community. community

My own concept is for my son, he has gone to the Naperville public library

since he was too little to know what a book is, and through his high school

transition I wanted him to cement a relationship with that community

institution. He walks from our house to the barber shop and all those

people know him and in his community look after him. (At least that is what

I hope)

After hearing the folks last night at the Howe hearing maintaining their

children are in their community, I am not sure there is a text book

offering. Right now a state op is NOT community for my son, so I am seeing

community may be in the eyes of the beholder. I am sure more well read

people on OPADD have a definition on this . At 6 a. m., I am spinning

from the Howe hearing last night, this is what I can come up with.

Where ever it is, I want my son fully engaged in life, able to make choice,

doing all the things he can and wants to do. Safety is a big factor, but the

dignity of risk also plays a role in his life.

Cindi

[Guest guest]

I support all you are saying. I support all that Ellen has said.

Having outlined that, recognizing we dont want to have our person moved when

we are 80 how would we look at this. I have heard experienced people,

national types who close down institutions, why dont we just lock the front

door. As residents die, dont add new ones, as people choose to go into CILA

etc, dont add and eventually it will be empty. During this long process,the

towns and villages in Illinois can start building the capacity to get ready

for the younger generation of people who want community by our definition.

That last part is going to have to include parents of VERY young people to

help give the families coaching etc. so when the time comes the person with

the DD and the family are all ready for transitioninto community.

I am also pondering, like Ellen, what exactly to think or say about the

hearing last night. Many of us ended up having to leave before our

advocates got to speak. and I am sorry about that. I have many shoot from

the hip comments regarding the hearing, but I will take my counsel from

Ellen, and think and sleep on it. I too am for Howe closure, a better way ,

maybe, but an end to State ops, yes. The process, like we witnessed last

night was outragious..

Cindi

[Guest guest]

Cindi, it really is in the eyes of the beholder and some of these 40 and 50 year

olds knew nothing else, nor did their families.? I care that my son is happy,

that's all.? My mom is in a nursing home and one of her roomates was a 60 year

old woman who was born 3 months early, didn't walk until she was 5 and is

legally blind.? From what she has told me ever since her parents died and

possibly even before she's lived in facilities like this nursing home.? It is

her family so for her it's a good situation.? She's been at this one for 15

years.

H.

Re: Institution vs. ICF-DD

last night at the hearing on Howe, there were parents trying to save Howe

because it is their children's community. in fact SOME of those people

actually were from the south suburbs, so I guess in a way that works. The

families reported their children (most in late 40s early 50s) go off campus

again into the community to a workshop. An ICFDD is I understand a nursing

home model, at least based on its funding plan. I would suppose if a person

wanted to look at it one way the individuals living at ICFDD are in a

community. community

My own concept is for my son, he has gone to the Naperville public library

since he was too little to know what a book is, and through his high school

transition I wanted him to cement a relationship with that community

institution. He walks from our house to the barber shop and all those

people know him and in his community look after him. (At least that is what

I hope)

After hearing the folks last night at the Howe hearing maintaining their

children are in their community, I am not sure there is a text book

offering. Right now a state op is NOT community for my son, so I am seeing

community may be in the eyes of the beholder. I am sure more well read

people on OPADD have a definition on this . At 6 a. m., I am spinning

from the Howe hearing last night, this is what I can come up with.

Where ever it is, I want my son fully engaged in life, able to make choice,

doing all the things he can and wants to do. Safety is a big factor, but the

dignity of risk also plays a role in his life.

Cindi

------------------------------------

[Guest guest]

Interesting point Laurie that goes back to Ellen's saying we should investigate.

2 parents at the Wheaton meeting challenged those figures $ by asking the

speaker where she got the numbers and she was unable to respond. Curiously, when

I received notice of the HBW increase to 1348 per month my first thought was

($80 x n people) couldn't we just give funding to more families? Then I

calculated how many more hours Quentin would get: roughly 5 per month.

Thais

--

WOW! Homepage (http://www.wowway.com)

[Guest guest]

I think the families of these individuals need to realize that their loved ones

will fare better in a smaller home environment.

Finato

www.AngelSpeaks.com

www.wegrowdreams.org

From: sunshinebeaches3@... <sunshinebeaches3@...>

Subject: Re: Institution vs. ICF-DD

IPADDUnite

Date: Friday, December 12, 2008, 12:41 PM

Cindi, it really is in the eyes of the beholder and some of these 40 and 50 year

olds knew nothing else, nor did their families.? I care that my son is happy,

that's all.? My mom is in a nursing home and one of her roomates was a 60 year

old woman who was born 3 months early, didn't walk until she was 5 and is

legally blind.? From what she has told me ever since her parents died and

possibly even before she's lived in facilities like this nursing home.? It is

her family so for her it's a good situation.? She's been at this one for 15

years.

H.

Re: Institution vs. ICF-DD

last night at the hearing on Howe, there were parents trying to save Howe

because it is their children's community. in fact SOME of those people

actually were from the south suburbs, so I guess in a way that works. The

families reported their children (most in late 40s early 50s) go off campus

again into the community to a workshop. An ICFDD is I understand a nursing

home model, at least based on its funding plan. I would suppose if a person

wanted to look at it one way the individuals living at ICFDD are in a

community. community

My own concept is for my son, he has gone to the Naperville public library

since he was too little to know what a book is, and through his high school

transition I wanted him to cement a relationship with that community

institution. He walks from our house to the barber shop and all those

people know him and in his community look after him. (At least that is what

I hope)

After hearing the folks last night at the Howe hearing maintaining their

children are in their community, I am not sure there is a text book

offering. Right now a state op is NOT community for my son, so I am seeing

community may be in the eyes of the beholder. I am sure more well read

people on OPADD have a definition on this . At 6 a. m., I am spinning

from the Howe hearing last night, this is what I can come up with.

Where ever it is, I want my son fully engaged in life, able to make choice,

doing all the things he can and wants to do. Safety is a big factor, but the

dignity of risk also plays a role in his life.

Cindi

------------ --------- --------- ------

[Guest guest]

Yes, Cindi it was outrageous and as I have gotten more time to think, I have

gotten more angry...

The process was unfair...it was held in Tinley Park, when, in fact, it should

have been held either in Springfield or better yet, the Building and

proponents of closure were given late testimony times...If I had stayed I would

have been allowed to speak after sitting there listening to opponents of closure

for FOUR hours! The hearings went until almost 11 pm from what I have heard.

I don't want to see individuals sent to other state operated facilities too far

from their families...we MUST let money follow the person, so that if someone

does require $155,000 to transition into the community, that amount of money

will be available to them and on the other hand, for those who do not require

such extensive supports, we need to stop paying $155,000 for supports.

Families should be told that if they want their loved ones close, that community

is the most logical choice....Most importantly, the Division of Developmental

Disabilities must make sure that providers are paid on time, reimbursed at a

fair rate for their work, that community direct support staff make a living wage

and that employees at the state operated facilities are either offered

alternative employment or given adequate notice and severance...or whatever

their union contracts dictate. We do not want to set individuals transitioning

from the institution to the community up for failure.

I am MORE convinced than ever that Howe should be closed. I hope the hearing

does not interfere with the state's plan to do so.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Institution vs. ICF-DD

I support all you are saying. I support all that Ellen has said.

Having outlined that, recognizing we dont want to have our person moved when

we are 80 how would we look at this. I have heard experienced people,

national types who close down institutions, why dont we just lock the front

door. As residents die, dont add new ones, as people choose to go into CILA

etc, dont add and eventually it will be empty. During this long process,the

towns and villages in Illinois can start building the capacity to get ready

for the younger generation of people who want community by our definition.

That last part is going to have to include parents of VERY young people to

help give the families coaching etc. so when the time comes the person with

the DD and the family are all ready for transitioninto community.

I am also pondering, like Ellen, what exactly to think or say about the

hearing last night. Many of us ended up having to leave before our

advocates got to speak. and I am sorry about that. I have many shoot from

the hip comments regarding the hearing, but I will take my counsel from

Ellen, and think and sleep on it. I too am for Howe closure, a better way ,

maybe, but an end to State ops, yes. The process, like we witnessed last

night was outragious..

Cindi

[Guest guest]

Laurie:

I agree completely. No flak here

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Institution vs. ICF-DD

last night at the hearing on Howe, there were parents trying to save Howe

because it is their children's community. in fact SOME of those people

actually were from the south suburbs, so I guess in a way that works. The

families reported their children (most in late 40s early 50s) go off campus

again into the community to a workshop. An ICFDD is I understand a nursing

home model, at least based on its funding plan. I would suppose if a person

wanted to look at it one way the individuals living at ICFDD are in a

community. community

My own concept is for my son, he has gone to the Naperville public library

since he was too little to know what a book is, and through his high school

transition I wanted him to cement a relationship with that community

institution. He walks from our house to the barber shop and all those

people know him and in his community look after him. (At least that is what

I hope)

After hearing the folks last night at the Howe hearing maintaining their

children are in their community, I am not sure there is a text book

offering. Right now a state op is NOT community for my son, so I am seeing

community may be in the eyes of the beholder. I am sure more well read

people on OPADD have a definition on this . At 6 a. m., I am spinning

from the Howe hearing last night, this is what I can come up with.

Where ever it is, I want my son fully engaged in life, able to make choice,

doing all the things he can and wants to do. Safety is a big factor, but the

dignity of risk also plays a role in his life.

Cindi

[Guest guest]

Thanks, .

Ellen

Ellen Garber Bronfeld

egskb@...

Institution vs. ICF-DD

I should know the answer to this, but I'm going to ask it anyway.

Just what exactly is community living considered?

Are 16 bed + ICF-DD's considered as community living? Or are they

considered institutions or neither?

Liz

----------------------------------------------------------

This e-mail may contain confidential and/or privileged information. If

you are not the intended recipient (or have received this e-mail in

error) please notify the sender immediately and destroy this e-mail. Any

unauthorized copying, disclosure or distribution of the material in this

e-mail may be a violation of patient/clients rights and therefore a violation

of Illinois and federal law and is strictly forbidden.

----------------------------------------------------------

Disclaimer added by CodeTwo Exchange Rules

http://www.codetwo.com

[Guest guest]

I am glad you are finding your " voice " Thais.

This is so hard. When I saw all those families, hundreds of them, last night, I

was so upset. It took me until this afternoon to get over the impact they made

on me. I am now once again supercharged and ready to go head to head with

anyone over the civil rights of people with disabilities to live in their own

communities in the smallest settings possible.

Thanks for speaking up!

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Institution vs. ICF-DD

I agree,Ellen. though I wasn't at the Howe meeting I understand what you mean

because I was at the Town hall meeting in Wheaton to support Blueprint and there

were more parents protesting the closing of institutions where their 40-50

adults are cared for. It prompted me to speak up (along with your encouragement)

even though I hadn't prepared anything. I think it all comes down to what

supports are in place. I am sure it is difficult for 77 year old parents to

imagine what kind of supports their loved ones can have in the community just as

I did not push for the supports in school 15 years ago for Quentin that

preschoolers are getting now because I didn't know how.

Thais

--

WOW! Homepage (http://www.wowway.com)

[Guest guest]

We have an even worse situation, Gail...I am not sure if there is actually

community capacity for the 300 individuals at Howe, though, according to the

recent information from Howe, well over half of those individuals are choosing

to be relocated to other state operated facilities. But even so, 100 or so

individuals will be hard to accommodate in community based housing even if

actual " beds " exist. Providers cannot afford to take them since the state is

behind in paying them and they simply do not have the resources...each CILA

placement involves a shortfall of probably around $10,000 (at least)...the state

does not reimburse at acceptable rates. Most agencies are struggling just to

make their payroll. They are not likely to have the resources to purchase and

establish new homes.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Institution vs. ICF-DD

last night at the hearing on Howe, there were parents trying to save Howe

because it is their children's community. in fact SOME of those people

actually were from the south suburbs, so I guess in a way that works. The

families reported their children (most in late 40s early 50s) go off campus

again into the community to a workshop. An ICFDD is I understand a nursing

home model, at least based on its funding plan. I would suppose if a person

wanted to look at it one way the individuals living at ICFDD are in a

community.

My own concept is for my son, he has gone to the Naperville public library

since he was too little to know what a book is, and through his high school

transition I wanted him to cement a relationship with that community

institution. He walks from our house to the barber shop and all those

people know him and in his community look after him. (At least that is what

I hope)

After hearing the folks last night at the Howe hearing maintaining their

children are in their community, I am not sure there is a text book

offering. Right now a state op is NOT community for my son, so I am seeing

community may be in the eyes of the beholder. I am sure more well read

people on OPADD have a definition on this . At 6 a. m., I am spinning

from the Howe hearing last night, this is what I can come up with.

Where ever it is, I want my son fully engaged in life, able to make choice,

doing all the things he can and wants to do. Safety is a big factor, but the

dignity of risk also plays a role in his life.

Cindi

[Guest guest]

I manage a day program in central Illinois. Someone from Howe recently moved

into an 8 bed group home that we serve, and now attends our program. I must

tell you that there are not enough community resources to adequately support

those who are transitioning from institutional care to community living. The

person that we support has developed skills that obviously served her well in

her previous situation (including communication and coping skills that make me

question and fear the types of support she recieved at Howe), but are a huge

detriment in community services. She desperately needs 1:1 staff support, but

this level of supervision is difficult, if not impossible, to provide.

I truly believe that everyone deserves the opportunity to live, work and

participate in their community. However, adequate supports must be provided.

IPADDUnite@...: egskb@...: Fri, 12 Dec 2008

17:02:49 -0600Subject: Re: Institution vs. ICF-DD

We have an even worse situation, Gail...I am not sure if there is actually

community capacity for the 300 individuals at Howe, though, according to the

recent information from Howe, well over half of those individuals are choosing

to be relocated to other state operated facilities. But even so, 100 or so

individuals will be hard to accommodate in community based housing even if

actual " beds " exist. Providers cannot afford to take them since the state is

behind in paying them and they simply do not have the resources...each CILA

placement involves a shortfall of probably around $10,000 (at least)...the state

does not reimburse at acceptable rates. Most agencies are struggling just to

make their payroll. They are not likely to have the resources to purchase and

establish new homes.EllenEllen Garber Bronfeldegskb@...----- Original

Message ----- From: G Mrozak IPADDUnite Sent: Friday,

December 12, 2008 11:47 AMSubject: Re: Institution vs.

ICF-DDInteresting remarks from Ellen. To her list, I'd add:3--Before we rally

against something, we need to have viable alternatives that can be activated

before or as the disliked concept closes. What concerns me about closing these

larger facilities is that, right now, we are woefully short of housing options.

I sure wouldn't want to move all the folks out of large facilities, only to need

to move them again in a short time frame, because the move was poorly planned or

the options were very limited.-GailFrom: ELLEN BRONFELD <egskb@...>Subject:

Re: Institution vs. ICF-DDIPADDUnite@...:

Friday, December 12, 2008, 8:12 AMI like your idea of " dignity of risk " Cindi.

It is a good conceptual framework for those of us who believe our children who

happen to have disabilities shouldn't be infantalized and taken care of...I too

was at the hearing. I don't have the time this morning to " pontificate " and I am

also still absorbing and processing the experience. Here are two things I

thought about upon waking this morning...1. Before we rally against something we

need to investigate charges and allegations and try, to the best of our ability

to familiarize ourselves with the facts.2. Before we rally against something we

also need to go see it, touch it, feel it, in some way.Obviously, if there is

something overseas and far away, (such as, Darfur) that might not be possible,

but if it is within our ability to do so, we should go and see what it is we are

against...That said, there is a difference between philosophical discussion and

practical application of a belief system...More later...By the way, for anyone

who is now puzzled...I am still in favor of closure of Howe...I have some

thoughts about how that could be operationalized in a little different way,

perhaps.EllenEllen Garber Bronfeldegskbsbcglobal (DOT) net Re: Institution vs. ICF-DDlast night at

the hearing on Howe, there were parents trying to save Howe because it is their

children's community. in fact SOME of those people actually were from the south

suburbs, so I guess in a way that works. The families reported their children

(most in late 40s early 50s) go off campus again into the community to a

workshop. An ICFDD is I understand a nursing home model, at least based on its

funding plan. I would suppose if a person wanted to look at it one way the

individuals living at ICFDD are in a community. My own concept is for my son, he

has gone to the Naperville public library since he was too little to know what a

book is, and through his high school transition I wanted him to cement a

relationship with that community institution. He walks from our house to the

barber shop and all those people know him and in his community look after him.

(At least that is what I hope)After hearing the folks last night at the Howe

hearing maintaining their children are in their community, I am not sure there

is a text book offering. Right now a state op is NOT community for my son, so I

am seeing community may be in the eyes of the beholder. I am sure more well read

people on OPADD have a definition on this . At 6 a. m., I am spinning from the

Howe hearing last night, this is what I can come up with.Where ever it is, I

want my son fully engaged in life, able to make choice, doing all the things he

can and wants to do. Safety is a big factor, but the dignity of risk also plays

a role in his life.Cindi [Non-text portions of this message have been

removed]

[Guest guest]

Thanks for the input, .

This is a BIG problem. DHS/DDD needs to hear this over and over again.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Institution vs. ICF-DDlast night at

the hearing on Howe, there were parents trying to save Howe because it is their

children's community. in fact SOME of those people actually were from the south

suburbs, so I guess in a way that works. The families reported their children

(most in late 40s early 50s) go off campus again into the community to a

workshop. An ICFDD is I understand a nursing home model, at least based on its

funding plan. I would suppose if a person wanted to look at it one way the

individuals living at ICFDD are in a community. My own concept is for my son, he

has gone to the Naperville public library since he was too little to know what a

book is, and through! his hig h school transition I wanted him to cement a

relationship with that community institution. He walks from our house to the

barber shop and all those people know him and in his community look after him.

(At least that is what I hope)After hearing the folks last night at the Howe

hearing maintaining their children are in their community, I am not sure there

is a text book offering. Right now a state op is NOT community for my son, so I

am seeing community may be in the eyes of the beholder. I am sure more well read

people on OPADD have a definition on this . At 6 a. m., I am spinning from the

Howe hearing last night, this is what I can come up with.Where ever it is, I

want my son fully engaged in life, able to make choice, doing all the things he

can and wants to do. Safety is a big factor, but the dignity of risk also plays

a role in his life.Cindi [Non-text portions of this message have been

removed]

[Guest guest]

Moving forward for our young people yes but we can't expect those who have older

kids or family members to be able to cope and manage, it is very sad but all

they know.

H.

Re: Institution vs. ICF-DD

Thanks for the input, .

This is a BIG problem. DHS/DDD needs to hear this over and over again.

Ellen

Ellen Garber Bronfeld

egskb@...

Re:

Institution vs. ICF-DDlast night at the hearing on Howe, there were

parents trying to save Howe because it is their children's community. in fact

SOME of those people actually were from the south suburbs, so I guess in a way

that works. The families reported their children (most in late 40s early 50s) go

off campus again into the community to a workshop. An ICFDD is I understand a

nursing home model, at least based on its funding plan. I would suppose if a

person wanted to look at it one way the individuals living at ICFDD are in a

community. My own concept is for my son, he has gone to the Naperville public

library since he was too little to know what a book is, and through! his hig h

school transition I wanted him to cement a relationship with that community

institution. He walks from our house to the barber shop and all those people

know him and in his community look after him. (At least that is what I

hope)After hearing the folks last night at the Howe hearing maintaining their

children are in th

eir community, I am not sure there is a text book offering. Right now a state op

is NOT community for my son, so I am seeing community may be in the eyes of the

beholder. I am sure more well read people on OPADD have a definition on this .

At 6 a. m., I am spinning from the Howe hearing last night, this is what I can

come up with.Where ever it is, I want my son fully engaged in life, able to make

choice, doing all the things he can and wants to do. Safety is a big factor, but

the dignity of risk also plays a role in his life.Cindi [Non-text portions of

this message have been removed][Non-text portions of this message have been

removed][Non-te

xt portions of this message have been removed]

__________________________________________________________

Send e-mail faster without improving your typing skills.

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8

[Guest guest]

>

> The LIgas lawsuit considers ICFDD's with more than 8 people living

there

> to be an institution.

Thank you, , that answered my question.

I'm always hearing about community based living, which to me means being

able to be supported in the community. Having access to transportation,

shopping leisure activities, etc....things my son used to do when he

lived at home & now does usually on weekends when he's home....(he now

seperates the two by calling our house " the yellow house " .

Living in the group home, he can only access community activities when

there is enough staff, or when I'm able to go & be his " personal aide " .

He's been harder to take out to activities though since moving out of

our house, due to increased annoying, obstinate & sometimes aggressive

behaviors.

Mostly because he doesn't want to be at the group home. (I'm thinking he

thought the grass was going to be greener, but he found out it wasn't.)

But if he'd move back home, I was told he'd lose all his funding for

his d.t program. He can't afford to sit around the house all the time.

He needs to be doing something during the day. I'd hate for him to lose

that; the program that he's in now, seems to be working okay.

Liz

[Guest guest]

this is what I was talking about. cindi

[Guest guest]

I attended the hearing with my son, expecting the meeting would last

a few hours. I hoped to perhaps meet a few IPADDU members and was

looking forward to hearing testimony from the ARC, Ellen, and

Progress Center for Independent Living (of which we are members).

After listening to 3 hours, we decided to leave when we heard there

were another 5 or 6 panels of family members to speak before the

proponents. I was stunned at the number of legislators sympathetic

to the Howe parents and the hundreds of parents at the meeting. This

was my first event, and wonder why they are having hearings if it is

a done deal? I don't think the written testimony of proponents will

go very far with the emotional and passionate testimony we heard last

night. I left very disturbed and felt very confused who to believe.

It is a much more complicated issue than I realized. It seemed

several parents consider moving their children to other state ops a

death sentence. What senator or rep is going to vote for that?

I agree with Laurie and wonder if anyone at the hearing brought this

point up after we left? That would be a powerful argument for

closure if the numbers are correct. The group's dialog today should

be shared with the legislators, too. It has helped me become clearer

about the big picture, whereas last evening I was thinking perhaps

they should accommodate those who wanted to stay at Howe.

I have been invited to breakfast with our newly elected state rep

tomorrow and some other Moms. I'll be curious to hear his opinion.

Withers

>

> Yes, Cindi it was outrageous and as I have gotten more time to

think, I have gotten more angry...

> The process was unfair...it was held in Tinley Park, when, in fact,

it should have been held either in Springfield or better yet, the

Building and proponents of closure were given late testimony

times...If I had stayed I would have been allowed to speak after

sitting there listening to opponents of closure for FOUR hours! The

hearings went until almost 11 pm from what I have heard.

> I don't want to see individuals sent to other state operated

facilities too far from their families...we MUST let money follow the

person, so that if someone does require $155,000 to transition into

the community, that amount of money will be available to them and on

the other hand, for those who do not require such extensive supports,

we need to stop paying $155,000 for supports. Families should be

told that if they want their loved ones close, that community is the

most logical choice....Most importantly, the Division of

Developmental Disabilities must make sure that providers are paid on

time, reimbursed at a fair rate for their work, that community direct

support staff make a living wage and that employees at the state

operated facilities are either offered alternative employment or

given adequate notice and severance...or whatever their union

contracts dictate. We do not want to set individuals transitioning

from the institution to the community up for failure.

> I am MORE convinced than ever that Howe should be closed. I hope

the hearing does not interfere with the state's plan to do so.

> Ellen

> Ellen Garber Bronfeld

> egskb@...

> Re: Institution vs. ICF-DD

>

>

> I support all you are saying. I support all that Ellen has said.

> Having outlined that, recognizing we dont want to have our person

moved when

> we are 80 how would we look at this. I have heard experienced

people,

> national types who close down institutions, why dont we just lock

the front

> door. As residents die, dont add new ones, as people choose to go

into CILA

> etc, dont add and eventually it will be empty. During this long

process,the

> towns and villages in Illinois can start building the capacity to

get ready

> for the younger generation of people who want community by our

definition.

> That last part is going to have to include parents of VERY young

people to

> help give the families coaching etc. so when the time comes the

person with

> the DD and the family are all ready for transitioninto community.

> I am also pondering, like Ellen, what exactly to think or say

about the

> hearing last night. Many of us ended up having to leave before

our

> advocates got to speak. and I am sorry about that. I have many

shoot from

> the hip comments regarding the hearing, but I will take my

counsel from

> Ellen, and think and sleep on it. I too am for Howe closure, a

better way ,

> maybe, but an end to State ops, yes. The process, like we

witnessed last

> night was outragious..

> Cindi

>

>

>

>

>

>

[Guest guest]

It sounds like the house he is living in may not be the right " fit "

At the very least that should be communicated to your son's case worker.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Institution vs. ICF-DD

>

> The LIgas lawsuit considers ICFDD's with more than 8 people living

there

> to be an institution.

Thank you, , that answered my question.

I'm always hearing about community based living, which to me means being

able to be supported in the community. Having access to transportation,

shopping leisure activities, etc....things my son used to do when he

lived at home & now does usually on weekends when he's home....(he now

seperates the two by calling our house " the yellow house " .

Living in the group home, he can only access community activities when

there is enough staff, or when I'm able to go & be his " personal aide " .

He's been harder to take out to activities though since moving out of

our house, due to increased annoying, obstinate & sometimes aggressive

behaviors.

Mostly because he doesn't want to be at the group home. (I'm thinking he

thought the grass was going to be greener, but he found out it wasn't.)

But if he'd move back home, I was told he'd lose all his funding for

his d.t program. He can't afford to sit around the house all the time.

He needs to be doing something during the day. I'd hate for him to lose

that; the program that he's in now, seems to be working okay.

Liz

[Guest guest]

I am still so glad you were there! Sorry we didn't connect. I am also relieved

to know I wasn't the only one who had very conflicted feelings about the

testimonies.

It is great that you are meeting with your new state Rep...you have a perfect

opportunity to hear what he has to say but you also have the opportunity to

start educating him on your issues.

I would love to know how it goes tomorrow.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Institution vs. ICF-DD

>

>

> I support all you are saying. I support all that Ellen has said.

> Having outlined that, recognizing we dont want to have our person

moved when

> we are 80 how would we look at this. I have heard experienced

people,

> national types who close down institutions, why dont we just lock

the front

> door. As residents die, dont add new ones, as people choose to go

into CILA

> etc, dont add and eventually it will be empty. During this long

process,the

> towns and villages in Illinois can start building the capacity to

get ready

> for the younger generation of people who want community by our

definition.

> That last part is going to have to include parents of VERY young

people to

> help give the families coaching etc. so when the time comes the

person with

> the DD and the family are all ready for transitioninto community.

> I am also pondering, like Ellen, what exactly to think or say

about the

> hearing last night. Many of us ended up having to leave before

our

> advocates got to speak. and I am sorry about that. I have many

shoot from

> the hip comments regarding the hearing, but I will take my

counsel from

> Ellen, and think and sleep on it. I too am for Howe closure, a

better way ,

> maybe, but an end to State ops, yes. The process, like we

witnessed last

> night was outragious..

> Cindi

>

>

>

>

>

>

[Guest guest]

Our newly elected state rep Mike Zalewski met with a few Moms for

breakfast to discuss a clause for informed consent in vaccine

legislation. I took the opportunity to mention the hearing for

closure of Howe and some of the issues regarding housing for our

older children. He seems to think the Howe closure will not happen,

that the legislature will distance itself from any of the Governor's

proposals, and that closure is unpopular with several legislators.

That is the impression I got from the hearing, too. He was

unfamiliar with the Blueprint, but has worked with Tony auski

from The Arc in the past and respects him. He doesn't know yet what

bills he will be asked to focus on, but he is open to listening and

learning our concerns. What else should we be doing to educate our

legislators about the Blueprint?

Withers

> >

> > Yes, Cindi it was outrageous and as I have gotten more time to

> think, I have gotten more angry...

> > The process was unfair...it was held in Tinley Park, when, in

fact,

> it should have been held either in Springfield or better yet, the

> Building and proponents of closure were given late

testimony

> times...If I had stayed I would have been allowed to speak after

> sitting there listening to opponents of closure for FOUR hours!

The

> hearings went until almost 11 pm from what I have heard.

> > I don't want to see individuals sent to other state operated

> facilities too far from their families...we MUST let money follow

the

> person, so that if someone does require $155,000 to transition

into

> the community, that amount of money will be available to them and

on

> the other hand, for those who do not require such extensive

supports,

> we need to stop paying $155,000 for supports. Families should be

> told that if they want their loved ones close, that community is

the

> most logical choice....Most importantly, the Division of

> Developmental Disabilities must make sure that providers are paid

on

> time, reimbursed at a fair rate for their work, that community

direct

> support staff make a living wage and that employees at the state

> operated facilities are either offered alternative employment or

> given adequate notice and severance...or whatever their union

> contracts dictate. We do not want to set individuals

transitioning

> from the institution to the community up for failure.

> > I am MORE convinced than ever that Howe should be closed. I

hope

> the hearing does not interfere with the state's plan to do so.

> > Ellen

> > Ellen Garber Bronfeld

> > egskb@

> > Re: Institution vs. ICF-DD

> >

> >

> > I support all you are saying. I support all that Ellen has said.

> > Having outlined that, recognizing we dont want to have our

person

> moved when

> > we are 80 how would we look at this. I have heard experienced

> people,

> > national types who close down institutions, why dont we just

lock

> the front

> > door. As residents die, dont add new ones, as people choose to

go

> into CILA

> > etc, dont add and eventually it will be empty. During this long

> process,the

> > towns and villages in Illinois can start building the capacity

to

> get ready

> > for the younger generation of people who want community by our

> definition.

> > That last part is going to have to include parents of VERY

young

> people to

> > help give the families coaching etc. so when the time comes the

> person with

> > the DD and the family are all ready for transitioninto

community.

> > I am also pondering, like Ellen, what exactly to think or say

> about the

> > hearing last night. Many of us ended up having to leave before

> our

> > advocates got to speak. and I am sorry about that. I have many

> shoot from

> > the hip comments regarding the hearing, but I will take my

> counsel from

> > Ellen, and think and sleep on it. I too am for Howe closure, a

> better way ,

> > maybe, but an end to State ops, yes. The process, like we

> witnessed last

> > night was outragious..

> > Cindi

> >

> >

> >

> >

> >

> >