Re: Institution vs. ICF-DD

[Guest guest]

Pat:

Do you have a copy of the Blueprint and the Executive Summary to give Rep.

Zalewski?

I think it would be good for him to hear your individual stories, meet your

children and hear what their and your hopes and dreams are for them...especially

in regard to community inclusion, paid employment, affordable housing...He needs

to know that a major concern right now is that the state of Illinois is so far

behind in paying their bills that supports and services for people with

disabilities are being threatened because agencies could soon be closing their

doors to current participants/customers and certainly almost no agency is

accepting new participants or customers...

Providers need to be paid on time, and community agencies need to be able to pay

staff a living wage.

Those are all the major issues out there right now...

If I have left anything out...others might have some additional thoughts.

It sounds like you have made a great first attempt at educating the

Representative.

I sure hope he is wrong about Howe.

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]

I think for most people, this is true. However, supports MUST be in place, or

community living becomes even more restrictive than institutional life.

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

13:00:22 -0800Subject: Re: Institution vs. ICF-DD

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

will fare better in a smaller home environment.

Finatowww.AngelSpeaks.comwww.wegrowdreams.orgFrom:

sunshinebeaches3@... <sunshinebeaches3@...>Subject: Re:

Institution vs. ICF-DDIPADDUnite@...: Friday, December 12,

2008, 12:41 PMCindi, 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-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. communityMy 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]

Another part of the picture is that people who are supported in State Ops use a

significantly higher amount of the State's very limited financial resources than

people who live in smaller community settings.  The money used to support one

person annual in a State Op would support two-three people in community living. 

So moving people from State Ops to small coummunity settings would significantly

increase IL's capacity to deliver residential services even without any increase

in budget.  This is a very relevant arguement, given the huge backlog of people

needing residential support and the State's ongoing poor fiscal situation.

" The secret to l'Arche is relationship: meeting people...heart to heart " .  Jean

Vanier

Visit us on the 2nd Thursday of each month!

 

andra Conroy

Executive Director and Community Leader

L'Arche Chicago 1049 S Austin Blvd Chicago IL 60644                     

Office:708-795-1273 Home: 773-287-8249

From: sunshinebeaches3@ aol.com

<sunshinebeaches3@ aol.com>Subject: Re: Institution vs. ICF-DDTo:

IPADDUnite@gro ups.comDate: Friday, December 12, 2008, 12:41 PMCindi, 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-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. communityMy own concept is for my s! on, he h as 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]

That is mostly correct, in my opinion, andra. I think we always have to be

cautious about telling legislators and others that it is " x " number of dollars

cheaper for individuals with disabilities to live in the community. For many

individuals it will be cheaper...it could be 1/2 the cost or 1/3 the cost...it

just depends on what someone needs to live as safely and independently as

possible. It will also be the case, no doubt, that some individuals, especially

those with significant behavioral challenges or health issues, will cost at

least what is being spent on individuals in the state operated facilities. On

balance, though, I think it is entirely likely that there will be cost savings

and the ability to serve more individuals in the community IF state operated

facilities were down-sized, if money followed the person, if there was an

acceptable, objective way to quantify needs so that individuals got what they

needed in funding...not some " standard " amount, AND if money saved from closure

of the state operated facility was re-invested in providing supports and

services to individuals in the community.

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. communityMy own concept is for my s! on, he h as 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]

Here are some thoughts regarding SODC and ICF-DD. My son is currently

in a SODC and has been in an ICF-DD. ly, I prefer the SODC to

the ICF-DD, but am trying desperately to get him into a CILA where he

really belongs.

ICF-DDs operate under the rules spelled out in the Nursing Home Act.

They are very restrictive. No one is allowed outside the facility

alone period. A staff member must be with them at all times outside

the building, The patio and yard is considered outside. Since there

was usually only one staff member on in the late afternoon through the

night he could not sit on the patio unless everyone wanted to be on

the patio. This was a real issue with Tony because he loves to be

outdoors.

We were lucky in that Tony was in a 4 bed ICF-DD, which is extremely

rare. They had three bedrooms so someone had to share a room. His

roommate was prone to violent our bursts and Tony became afraid of

him. Tony was given his own room for a while, but the guardian of the

individual who had to move out and in with someone else complained and

he got his private room back.

As has been pointed out by others there is a constant turnover of

staff because of the low pay. Most all of them work more than one

job. Overall they were all good people who wanted to do right by the

residents. Most were very afraid to do anything they perceived the

higher up boss would not like. For example, Tony wanted his night

stand in his closet to use as a cabinet there. It was something he

was hung up on. The big boss wanted all the furniture in specific

places and she inspected periodically to be sure it was in the " right

place " so he was in a constant battle with the staff. There was

really no reason he could not have the night stand where he wanted.

Everyone must go together to participate in any outing. If that isn't

your thing, too bad. If you want to do something no one else likes,

too bad. They work at a sheltered workshop. In an ICF-DD there is no

effort to foster independence or self direction.

When Tony was in the SODC the first time and had an opportunity to

move into a " group home " , we thought it was wonderful. We did not

know there were two kinds of group homes - ICF-DDs and CILAs - or the

differences. I am not sure we would have allowed him to go to the

ICF-DD if we had known. We thought he was getting an opportunity to

move into the community, when all he was getting was a smaller

facility with really less freedom. On the other hand it was a more

home-like atmosphere which he definitely enjoyed and from which he

benefited.

In many ways a SODC is like a college campus. There are several

residential buildings as well as recreational and support facilities.

Units are made up of same sex individuals with relatively the same

level of function. They live in rooms of two or four and share a

commode and sink with another room. There is a common bathing area on

each unit. There is a large dayroom as well as smaller lounge areas

if the population isn't such that the lounge areas become bedrooms.

If they are capable and trustworthy, residents are allowed to wander

the campus at will at certain times of the day. They can go to the

snackbar and meet friends (male and female) from other units. They

can go to the gym and participate in either structured or unstructured

exercise activities. They can walk to the main building to take their

paycheck from the workshop to be deposited in their trust fund, or to

withdraw money to spend. They can just take a walk. Tony loves to

ride his bike and he rides for hours when he comes back from workshop

or on the weekend as did may other residents. A staff member gathered

up old bikes and repair them so most everyone in Tony's unit has a

bike to ride even if they didn't own one. In many ways Tony has much

more freedom and independence in the SODC than he had in the ICF-DD.

His return to the SODC from the ICF-DD was precipitated by his running

off. He did not run away from the home, he just ran off, most of the

time not far, usually behind the dumpster or across the street under a

tree. He just want to be outside and to have some time to himself.

That was a major violation of the rules and would not - could not be

tolerated. By the time he returned to the SODC, he was happy to be back.

Many parents or love ones of residents at the SODC where Tony is tell

about multiply failed attempts to move their love one into a group

home. After several attempts they come to the conclusion the best

place for their love one is in the SODC where they can deal with

whatever issues the individual has. I must say that the staff where

Tony is at Shapiro Developmental Center are very good. While there is

turnover, it is not like at the ICF-DD. There is stability and the

staff are well trained and supervised. I cannot speak for the other

developmental centers. I have heard that Shapiro is the best run

center because of the director Ira .

I believe many of these failed attempts could be avoided if the

individuals were properly prepared. There needs to be a way to slowly

transition from one environment to another. Going from a college dorm

to a small home is a major lifestyle change and change is not simple

or easy for many of these individuals. To make the move from

institution to community successfully you must have a well thought out

and planned transition. That does not happen now.

I hope this sheds some light on the differences and explains why some

of these people are so insistent their love one belongs in the SODC.

Several months ago, Charlotte Cronin asked me to do some FAQs about

SODCs. I know she asked several others also and was compiling then

into a set of FAQs. Perhaps she would post the results in the file

here for future reference.

[Guest guest]

Thanks, , for sharing your perspective. No one has ever really explained to

me the differences in 'freedoms' between the larger 'campus' settings of the

state-operated developmental centers and smaller group situations in the

community. I can see how bikeriding or just walking from place to place would

be very attractive to your son - it would be to any of us. To those of us with

our children still living with us at home, these are 'freedoms' we take for

granted.

My question, though, still remains, about how the state and its taxpayers can

continue to justify the costs of these SODCs -- esp when so many families get NO

ASSISTANCE whatsoever. 15,000 families on waiting lists? What are we to do

about that?

Laurie

Re: Institution vs. ICF-DD

Here are some thoughts regarding SODC and ICF-DD. My son is currently

in a SODC and has been in an ICF-DD. ly, I prefer the SODC to

the ICF-DD, but am trying desperately to get him into a CILA where he

really belongs.

ICF-DDs operate under the rules spelled out in the Nursing Home Act.

They are very restrictive. No one is allowed outside the facility

alone period. A staff member must be with them at all times outside

the building, The patio and yard is considered outside. Since there

was usually only one staff member on in the late afternoon through the

night he could not sit on the patio unless everyone wanted to be on

the patio. This was a real issue with Tony because he loves to be

outdoors.

We were lucky in that Tony was in a 4 bed ICF-DD, which is extremely

rare. They had three bedrooms so someone had to share a room. His

roommate was prone to violent our bursts and Tony became afraid of

him. Tony was given his own room for a while, but the guardian of the

individual who had to move out and in with someone else complained and

he got his private room back.

As has been pointed out by others there is a constant turnover of

staff because of the low pay. Most all of them work more than one

job. Overall they were all good people who wanted to do right by the

residents. Most were very afraid to do anything they perceived the

higher up boss would not like. For example, Tony wanted his night

stand in his closet to use as a cabinet there. It was something he

was hung up on. The big boss wanted all the furniture in specific

places and she inspected periodically to be sure it was in the " right

place " so he was in a constant battle with the staff. There was

really no reason he could not have the night stand where he wanted.

Everyone must go together to participate in any outing. If that isn't

your thing, too bad. If you want to do something no one else likes,

too bad. They work at a sheltered workshop. In an ICF-DD there is no

effort to foster independence or self direction.

When Tony was in the SODC the first time and had an opportunity to

move into a " group home " , we thought it was wonderful. We did not

know there were two kinds of group homes - ICF-DDs and CILAs - or the

differences. I am not sure we would have allowed him to go to the

ICF-DD if we had known. We thought he was getting an opportunity to

move into the community, when all he was getting was a smaller

facility with really less freedom. On the other hand it was a more

home-like atmosphere which he definitely enjoyed and from which he

benefited.

In many ways a SODC is like a college campus. There are several

residential buildings as well as recreational and support facilities.

Units are made up of same sex individuals with relatively the same

level of function. They live in rooms of two or four and share a

commode and sink with another room. There is a common bathing area on

each unit. There is a large dayroom as well as smaller lounge areas

if the population isn't such that the lounge areas become bedrooms.

If they are capable and trustworthy, residents are allowed to wander

the campus at will at certain times of the day. They can go to the

snackbar and meet friends (male and female) from other units. They

can go to the gym and participate in either structured or unstructured

exercise activities. They can walk to the main building to take their

paycheck from the workshop to be deposited in their trust fund, or to

withdraw money to spend. They can just take a walk. Tony loves to

ride his bike and he rides for hours when he comes back from workshop

or on the weekend as did may other residents. A staff member gathered

up old bikes and repair them so most everyone in Tony's unit has a

bike to ride even if they didn't own one. In many ways Tony has much

more freedom and independence in the SODC than he had in the ICF-DD.

His return to the SODC from the ICF-DD was precipitated by his running

off. He did not run away from the home, he just ran off, most of the

time not far, usually behind the dumpster or across the street under a

tree. He just want to be outside and to have some time to himself.

That was a major violation of the rules and would not - could not be

tolerated. By the time he returned to the SODC, he was happy to be back.

Many parents or love ones of residents at the SODC where Tony is tell

about multiply failed attempts to move their love one into a group

home. After several attempts they come to the conclusion the best

place for their love one is in the SODC where they can deal with

whatever issues the individual has. I must say that the staff where

Tony is at Shapiro Developmental Center are very good. While there is

turnover, it is not like at the ICF-DD. There is stability and the

staff are well trained and supervised. I cannot speak for the other

developmental centers. I have heard that Shapiro is the best run

center because of the director Ira .

I believe many of these failed attempts could be avoided if the

individuals were properly prepared. There needs to be a way to slowly

transition from one environment to another. Going from a college dorm

to a small home is a major lifestyle change and change is not simple

or easy for many of these individuals. To make the move from

institution to community successfully you must have a well thought out

and planned transition. That does not happen now.

I hope this sheds some light on the differences and explains why some

of these people are so insistent their love one belongs in the SODC.

Several months ago, Charlotte Cronin asked me to do some FAQs about

SODCs. I know she asked several others also and was compiling then

into a set of FAQs. Perhaps she would post the results in the file

here for future reference.

[Guest guest]

,

One more thing. I'm right there with you in supporting community

with appropriate supports for our loved ones; and one would hope that

funding in place at an SODC or ICF-DD would follow the person into

the community. It's not necessarily cheaper to create a safe and

meaningful life in the community, even if it's delivered at non-union

rates. The current out-of-pocket cost for us, here in the Naperville

area, for part-time help, is $15/hour + mileage depending on how much

driving the person needs to do. That's not so different from what

I've heard the unionized employees at the SODCs etc earn. Of course

my husband and I also don't currently shoulder the cost of healthcare

or pensions for our daughter's part-time helpers, which I know adds a

tremendous amount to the total yearly expenditures if we were to look

for help full-time.

But regardless, I don't think any of us can assume that the costs

automatically go way down with transitioning folks out of SODCs and

ICF-DD's into group homes. Not with the way my daughter and others

transition into ANYTHING new!! She'd probably need even more

support initially, to overcome her anxieties and subsequent behaviors

associated with a move of this kind.

Good luck to you and your son, and thanks again for sharing your

perspective with us.

Laurie

[Guest guest]

:

This is powerful! You make a great case about how the current system in

Illinois thwarts successful community inclusion. Without the appropriate

supports AKA MONEY, many individuals fail to achieve success in the community

living situations. Why does everyone think that it costs SO much less to live

in the community. While the costs are less, it still does take resources, that

are specific to each individuals needs. I suggest that you continue to push for

community placement along with " money follows the person " which would mean that

the funding your son currently has at the SODC would go with him to a community

housing arrangement...that said, it still takes good staff...they need to be

paid a living wage...

Got to run, but I am so happy that you took the time to share your experiences

with us, .

Thank you.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Institution vs. ICF-DD

Here are some thoughts regarding SODC and ICF-DD. My son is currently

in a SODC and has been in an ICF-DD. ly, I prefer the SODC to

the ICF-DD, but am trying desperately to get him into a CILA where he

really belongs.

ICF-DDs operate under the rules spelled out in the Nursing Home Act.

They are very restrictive. No one is allowed outside the facility

alone period. A staff member must be with them at all times outside

the building, The patio and yard is considered outside. Since there

was usually only one staff member on in the late afternoon through the

night he could not sit on the patio unless everyone wanted to be on

the patio. This was a real issue with Tony because he loves to be

outdoors.

We were lucky in that Tony was in a 4 bed ICF-DD, which is extremely

rare. They had three bedrooms so someone had to share a room. His

roommate was prone to violent our bursts and Tony became afraid of

him. Tony was given his own room for a while, but the guardian of the

individual who had to move out and in with someone else complained and

he got his private room back.

As has been pointed out by others there is a constant turnover of

staff because of the low pay. Most all of them work more than one

job. Overall they were all good people who wanted to do right by the

residents. Most were very afraid to do anything they perceived the

higher up boss would not like. For example, Tony wanted his night

stand in his closet to use as a cabinet there. It was something he

was hung up on. The big boss wanted all the furniture in specific

places and she inspected periodically to be sure it was in the " right

place " so he was in a constant battle with the staff. There was

really no reason he could not have the night stand where he wanted.

Everyone must go together to participate in any outing. If that isn't

your thing, too bad. If you want to do something no one else likes,

too bad. They work at a sheltered workshop. In an ICF-DD there is no

effort to foster independence or self direction.

When Tony was in the SODC the first time and had an opportunity to

move into a " group home " , we thought it was wonderful. We did not

know there were two kinds of group homes - ICF-DDs and CILAs - or the

differences. I am not sure we would have allowed him to go to the

ICF-DD if we had known. We thought he was getting an opportunity to

move into the community, when all he was getting was a smaller

facility with really less freedom. On the other hand it was a more

home-like atmosphere which he definitely enjoyed and from which he

benefited.

In many ways a SODC is like a college campus. There are several

residential buildings as well as recreational and support facilities.

Units are made up of same sex individuals with relatively the same

level of function. They live in rooms of two or four and share a

commode and sink with another room. There is a common bathing area on

each unit. There is a large dayroom as well as smaller lounge areas

if the population isn't such that the lounge areas become bedrooms.

If they are capable and trustworthy, residents are allowed to wander

the campus at will at certain times of the day. They can go to the

snackbar and meet friends (male and female) from other units. They

can go to the gym and participate in either structured or unstructured

exercise activities. They can walk to the main building to take their

paycheck from the workshop to be deposited in their trust fund, or to

withdraw money to spend. They can just take a walk. Tony loves to

ride his bike and he rides for hours when he comes back from workshop

or on the weekend as did may other residents. A staff member gathered

up old bikes and repair them so most everyone in Tony's unit has a

bike to ride even if they didn't own one. In many ways Tony has much

more freedom and independence in the SODC than he had in the ICF-DD.

His return to the SODC from the ICF-DD was precipitated by his running

off. He did not run away from the home, he just ran off, most of the

time not far, usually behind the dumpster or across the street under a

tree. He just want to be outside and to have some time to himself.

That was a major violation of the rules and would not - could not be

tolerated. By the time he returned to the SODC, he was happy to be back.

Many parents or love ones of residents at the SODC where Tony is tell

about multiply failed attempts to move their love one into a group

home. After several attempts they come to the conclusion the best

place for their love one is in the SODC where they can deal with

whatever issues the individual has. I must say that the staff where

Tony is at Shapiro Developmental Center are very good. While there is

turnover, it is not like at the ICF-DD. There is stability and the

staff are well trained and supervised. I cannot speak for the other

developmental centers. I have heard that Shapiro is the best run

center because of the director Ira .

I believe many of these failed attempts could be avoided if the

individuals were properly prepared. There needs to be a way to slowly

transition from one environment to another. Going from a college dorm

to a small home is a major lifestyle change and change is not simple

or easy for many of these individuals. To make the move from

institution to community successfully you must have a well thought out

and planned transition. That does not happen now.

I hope this sheds some light on the differences and explains why some

of these people are so insistent their love one belongs in the SODC.

Several months ago, Charlotte Cronin asked me to do some FAQs about

SODCs. I know she asked several others also and was compiling then

into a set of FAQs. Perhaps she would post the results in the file

here for future reference.

[Guest guest]

Thanks for clarifying.  I would have been more accurate to say that, relative to

the number of people they support, State Ops have higher costs.    Leaving aside

the cost of supporting any particular individual in either situation, a large

institution, which has large buildings and grounds to maintain and is nowhere

near the capacity for which it was built and has a tenured administrative staff,

will have higher fixed costs, purely based on plant and equipment costs and

maintenance staff.

" The secret to l'Arche is relationship: meeting people...heart to heart " .  Jean

Vanier

Visit us on the 2nd Thursday of each month!

 

andra Conroy

Executive Director and Community Leader

L'Arche Chicago 1049 S Austin Blvd Chicago IL 60644                     

Office:708-795-1273 Home: 773-287-8249

From: sunshinebeaches3@ aol.com

<sunshinebeaches3@ aol.com>Subject: Re: Institution vs. ICF-DDTo:

IPADDUnite@gro ups.comDate: Friday, December 12, 2008, 12:41 PMCindi, 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-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. communityMy own concept is for my s! on, he h as 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]

Money for proper supports is a huge issue.  I tentatively suggest that it is

also a paradigm issue.  Staff and agency administrators who have never lived

with a person with intellectual disabilities (sometimes, anyway) still have a

narrow view of their dreams and desires and might actually consider that they

are satisfied with a good TV and DVD's in the home and the occassional special

rec activity.

 

 

" The secret to l'Arche is relationship: meeting people...heart to heart " .  Jean

Vanier

Visit us on the 2nd Thursday of each month!

 

andra Conroy

Executive Director and Community Leader

L'Arche Chicago 1049 S Austin Blvd Chicago IL 60644                     

Office:708-795-1273 Home: 773-287-8249

From: ELLEN BRONFELD <egskb@...>

Subject: Re: Re: Institution vs. ICF-DD

IPADDUnite

Date: Thursday, December 18, 2008, 9:00 AM

:

This is powerful! You make a great case about how the current system in Illinois

thwarts successful community inclusion. Without the appropriate supports AKA

MONEY, many individuals fail to achieve success in the community living

situations. Why does everyone think that it costs SO much less to live in the

community. While the costs are less, it still does take resources, that are

specific to each individuals needs. I suggest that you continue to push for

community placement along with " money follows the person " which would mean that

the funding your son currently has at the SODC would go with him to a community

housing arrangement. ..that said, it still takes good staff...they need to be

paid a living wage...

Got to run, but I am so happy that you took the time to share your experiences

with us, .

Thank you.

Ellen

Ellen Garber Bronfeld

egskbsbcglobal (DOT) net

Re: Institution vs. ICF-DD

Here are some thoughts regarding SODC and ICF-DD. My son is currently

in a SODC and has been in an ICF-DD. ly, I prefer the SODC to

the ICF-DD, but am trying desperately to get him into a CILA where he

really belongs.

ICF-DDs operate under the rules spelled out in the Nursing Home Act.

They are very restrictive. No one is allowed outside the facility

alone period. A staff member must be with them at all times outside

the building, The patio and yard is considered outside. Since there

was usually only one staff member on in the late afternoon through the

night he could not sit on the patio unless everyone wanted to be on

the patio. This was a real issue with Tony because he loves to be

outdoors.

We were lucky in that Tony was in a 4 bed ICF-DD, which is extremely

rare. They had three bedrooms so someone had to share a room. His

roommate was prone to violent our bursts and Tony became afraid of

him. Tony was given his own room for a while, but the guardian of the

individual who had to move out and in with someone else complained and

he got his private room back.

As has been pointed out by others there is a constant turnover of

staff because of the low pay. Most all of them work more than one

job. Overall they were all good people who wanted to do right by the

residents. Most were very afraid to do anything they perceived the

higher up boss would not like. For example, Tony wanted his night

stand in his closet to use as a cabinet there. It was something he

was hung up on. The big boss wanted all the furniture in specific

places and she inspected periodically to be sure it was in the " right

place " so he was in a constant battle with the staff. There was

really no reason he could not have the night stand where he wanted.

Everyone must go together to participate in any outing. If that isn't

your thing, too bad. If you want to do something no one else likes,

too bad. They work at a sheltered workshop. In an ICF-DD there is no

effort to foster independence or self direction.

When Tony was in the SODC the first time and had an opportunity to

move into a " group home " , we thought it was wonderful. We did not

know there were two kinds of group homes - ICF-DDs and CILAs - or the

differences. I am not sure we would have allowed him to go to the

ICF-DD if we had known. We thought he was getting an opportunity to

move into the community, when all he was getting was a smaller

facility with really less freedom. On the other hand it was a more

home-like atmosphere which he definitely enjoyed and from which he

benefited.

In many ways a SODC is like a college campus. There are several

residential buildings as well as recreational and support facilities.

Units are made up of same sex individuals with relatively the same

level of function. They live in rooms of two or four and share a

commode and sink with another room. There is a common bathing area on

each unit. There is a large dayroom as well as smaller lounge areas

if the population isn't such that the lounge areas become bedrooms.

If they are capable and trustworthy, residents are allowed to wander

the campus at will at certain times of the day. They can go to the

snackbar and meet friends (male and female) from other units. They

can go to the gym and participate in either structured or unstructured

exercise activities. They can walk to the main building to take their

paycheck from the workshop to be deposited in their trust fund, or to

withdraw money to spend. They can just take a walk. Tony loves to

ride his bike and he rides for hours when he comes back from workshop

or on the weekend as did may other residents. A staff member gathered

up old bikes and repair them so most everyone in Tony's unit has a

bike to ride even if they didn't own one. In many ways Tony has much

more freedom and independence in the SODC than he had in the ICF-DD.

His return to the SODC from the ICF-DD was precipitated by his running

off. He did not run away from the home, he just ran off, most of the

time not far, usually behind the dumpster or across the street under a

tree. He just want to be outside and to have some time to himself.

That was a major violation of the rules and would not - could not be

tolerated. By the time he returned to the SODC, he was happy to be back.

Many parents or love ones of residents at the SODC where Tony is tell

about multiply failed attempts to move their love one into a group

home. After several attempts they come to the conclusion the best

place for their love one is in the SODC where they can deal with

whatever issues the individual has. I must say that the staff where

Tony is at Shapiro Developmental Center are very good. While there is

turnover, it is not like at the ICF-DD. There is stability and the

staff are well trained and supervised. I cannot speak for the other

developmental centers. I have heard that Shapiro is the best run

center because of the director Ira .

I believe many of these failed attempts could be avoided if the

individuals were properly prepared. There needs to be a way to slowly

transition from one environment to another. Going from a college dorm

to a small home is a major lifestyle change and change is not simple

or easy for many of these individuals. To make the move from

institution to community successfully you must have a well thought out

and planned transition. That does not happen now.

I hope this sheds some light on the differences and explains why some

of these people are so insistent their love one belongs in the SODC.

Several months ago, Charlotte Cronin asked me to do some FAQs about

SODCs. I know she asked several others also and was compiling then

into a set of FAQs. Perhaps she would post the results in the file

here for future reference.

[Guest guest]

I agree, andra.

By the way, I loved visiting your community last Thursday.

You do not have staff, in the traditional sense...It was a welcoming and

comfortable place to be and I enjoyed visiting with all who live there...

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Institution vs. ICF-DD

Here are some thoughts regarding SODC and ICF-DD. My son is currently

in a SODC and has been in an ICF-DD. ly, I prefer the SODC to

the ICF-DD, but am trying desperately to get him into a CILA where he

really belongs.

ICF-DDs operate under the rules spelled out in the Nursing Home Act.

They are very restrictive. No one is allowed outside the facility

alone period. A staff member must be with them at all times outside

the building, The patio and yard is considered outside. Since there

was usually only one staff member on in the late afternoon through the

night he could not sit on the patio unless everyone wanted to be on

the patio. This was a real issue with Tony because he loves to be

outdoors.

We were lucky in that Tony was in a 4 bed ICF-DD, which is extremely

rare. They had three bedrooms so someone had to share a room. His

roommate was prone to violent our bursts and Tony became afraid of

him. Tony was given his own room for a while, but the guardian of the

individual who had to move out and in with someone else complained and

he got his private room back.

As has been pointed out by others there is a constant turnover of

staff because of the low pay. Most all of them work more than one

job. Overall they were all good people who wanted to do right by the

residents. Most were very afraid to do anything they perceived the

higher up boss would not like. For example, Tony wanted his night

stand in his closet to use as a cabinet there. It was something he

was hung up on. The big boss wanted all the furniture in specific

places and she inspected periodically to be sure it was in the " right

place " so he was in a constant battle with the staff. There was

really no reason he could not have the night stand where he wanted.

Everyone must go together to participate in any outing. If that isn't

your thing, too bad. If you want to do something no one else likes,

too bad. They work at a sheltered workshop. In an ICF-DD there is no

effort to foster independence or self direction.

When Tony was in the SODC the first time and had an opportunity to

move into a " group home " , we thought it was wonderful. We did not

know there were two kinds of group homes - ICF-DDs and CILAs - or the

differences. I am not sure we would have allowed him to go to the

ICF-DD if we had known. We thought he was getting an opportunity to

move into the community, when all he was getting was a smaller

facility with really less freedom. On the other hand it was a more

home-like atmosphere which he definitely enjoyed and from which he

benefited.

In many ways a SODC is like a college campus. There are several

residential buildings as well as recreational and support facilities.

Units are made up of same sex individuals with relatively the same

level of function. They live in rooms of two or four and share a

commode and sink with another room. There is a common bathing area on

each unit. There is a large dayroom as well as smaller lounge areas

if the population isn't such that the lounge areas become bedrooms.

If they are capable and trustworthy, residents are allowed to wander

the campus at will at certain times of the day. They can go to the

snackbar and meet friends (male and female) from other units. They

can go to the gym and participate in either structured or unstructured

exercise activities. They can walk to the main building to take their

paycheck from the workshop to be deposited in their trust fund, or to

withdraw money to spend. They can just take a walk. Tony loves to

ride his bike and he rides for hours when he comes back from workshop

or on the weekend as did may other residents. A staff member gathered

up old bikes and repair them so most everyone in Tony's unit has a

bike to ride even if they didn't own one. In many ways Tony has much

more freedom and independence in the SODC than he had in the ICF-DD.

His return to the SODC from the ICF-DD was precipitated by his running

off. He did not run away from the home, he just ran off, most of the

time not far, usually behind the dumpster or across the street under a

tree. He just want to be outside and to have some time to himself.

That was a major violation of the rules and would not - could not be

tolerated. By the time he returned to the SODC, he was happy to be back.

Many parents or love ones of residents at the SODC where Tony is tell

about multiply failed attempts to move their love one into a group

home. After several attempts they come to the conclusion the best

place for their love one is in the SODC where they can deal with

whatever issues the individual has. I must say that the staff where

Tony is at Shapiro Developmental Center are very good. While there is

turnover, it is not like at the ICF-DD. There is stability and the

staff are well trained and supervised. I cannot speak for the other

developmental centers. I have heard that Shapiro is the best run

center because of the director Ira .

I believe many of these failed attempts could be avoided if the

individuals were properly prepared. There needs to be a way to slowly

transition from one environment to another. Going from a college dorm

to a small home is a major lifestyle change and change is not simple

or easy for many of these individuals. To make the move from

institution to community successfully you must have a well thought out

and planned transition. That does not happen now.

I hope this sheds some light on the differences and explains why some

of these people are so insistent their love one belongs in the SODC.

Several months ago, Charlotte Cronin asked me to do some FAQs about

SODCs. I know she asked several others also and was compiling then

into a set of FAQs. Perhaps she would post the results in the file

here for future reference.

[Guest guest]

Laurie, I agree with you completely on both counts! It is hard to move someone

content with their living situation - I know also from my in-laws who think they

can stay right where they are forever (they can't they are 85 and 86 and failing

health). I also agree that no one should feel entitled to a large sum of money

when the pot is so limited, and so many are waiting! Good luck convincing some

people!

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]

This discussion seems to assume that we should only be looking within the DD

system & #39;s paltry resources, arguing over how they get divvied up. I believe

our eyes should be on unbelievable resources that are wasted on pork, oil wars,

and the luxurious lives lived by the tiny percent of our population who own a

huge portion of the state & #39;s & country & #39;s wealth.

Richter wrote:

> Laurie, I agree with you completely on both counts! It is hard to

move someone content with their living situation - I know also from my in-laws

who think they can stay right where they are forever (they can't they are 85 and

86 and failing health). I also agree that no one should feel entitled to a

large sum of money when the pot is so limited, and so many are waiting! Good

luck convincing some people!

> 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]

It took me a while to get to all the recent emails, but just for the record...I

agree with Laurie and ...we need to re-allocate the limited resources but we

also need to be sensitive to the needs of individuals who have spent the

majority of their adult lives at Howe and other SODC's. What worries me

greatly is that ultimately there is so much work to be done regarding

preparation for institutional down-sizing in Illinois and there is no money and

so little administrative or bureaucratic will to make the necessary changes,

that I cannot envision how this will happen SUCCESSFULLY.

The Blueprint is a wonderful document...I hope we can manage to find the money,

create the infrastructure and make it happen, with as little trauma to the

individuals we hope will benefit from the changes.

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