Dream

[Guest guest]

Ellen

How does one access this State of the States report?

Kathleen

> >

> > I believe you and Pam should get together...this sounds like what

> she has proposed.

> > Personally, I would like our son Noah to live in our local community

> in a condo or apartment, maybe a small townhouse with a " typical "

> roommate and for free room and board, the roommate would assist him in

> the morning to get out and in the late afternoons and evenings as

> needed. Noah needs, pretty much 24/7 supervision, but I envision this

> more " normal " living situation, at least while he is young. I would

> consider other options as he ages, but a home of his own is my dream

> for him now and well into the future. I never want an agency to be

> able to shuffle him around. I want my son to be able to pick his

> roommates (typical or otherwise) and I definitely want him to have his

> own bedroom.

> > I think there is room for multiple choices and models with the

> exception of state run institutions, which are not appropriate for

> anyone...not even medically fragile, in my opinion. Everyone is

> capable of living in the community...EVERYONE! Go visit other

> states...it can be done and it is being done elsewhere.

> > Ellen

> > Ellen Garber Bronfeld

> > egskb@

> > Dream

> >

> >

> > Ok, just hear me out. My son is 26 with Down Syndrom. I have been

> > thinking about his future living situation and I just started

> thinking

> > gee wouldn't it be nice if there was a Community with nice town

homes

> > for the families and a few living centers for our adult children.

> They

> > could each have a small 2 bedroom area for 2 boys or girls to

live in

> > with a common dining area, rec room, livingroom, etc. (like

> retirement

> > homes) The families are close by but our children could learn to

live

> > away from home with dsupport so if we pass away they would feel

> > comfortable with where they are living. There just isn't many

choices

> > for us are there? My son doesn't want to move out and we don't want

> > him to but the future scares me. I know we had a lot of discussion

> > about this a while back but anyone have any new advice? Ideas?

Thanks

> > for reading. Shirley

> >

>

[Guest guest]

Hello,

     I know of two families that have built handi-capped accessible homes that have common living areas and several bedrooms.  Now both families are living with their own children, however they both plan to turn their homes into small privately-owned group homes when their disabled children are grown.  I believe they plan to have a full-time, live-in caretaker, who will assist the residents as needed.  This way, their children will be able to live in their own home forever!

Hope this helps,  

Re: Dream

Ellen

How does one access this State of the States report?

Kathleen

> >

> > I believe you and Pam should get together...this sounds like what

> she has proposed.

> > Personally, I would like our son Noah to live in our local community

> in a condo or apartment, maybe a small townhouse with a "typical"

> roommate and for free room and board, the roommate would assist him in

> the morning to get out and in the late afternoons and evenings as

> needed. Noah needs, pretty much 24/7 supervision, but I envision this

> more "normal" living situation, at least while he is young. I would

> consider other options as he ages, but a home of his own is my dream

> for him now and well into the future. I never want an agency to be

> able to shuffle him around. I want my son to be able to pick his

> roommates (typical or otherwise) and I definitely want him to have his

> own bedroom.

> > I think there is room for multiple choices and models with the

> exception of state run institutions, which are not appropriate for

> anyone...not even medically fragile, in my opinion. Everyone is

> capable of living in the community...EVERYONE! Go visit other

> states...it can be done and it is being done elsewhere.

> > Ellen

> > Ellen Garber Bronfeld

> > egskb@

> > Dream

> >

> >

> > Ok, just hear me out. My son is 26 with Down Syndrom. I have been

> > thinking about his future living situation and I just started

> thinking

> > gee wouldn't it be nice if there was a Community with nice town

homes

> > for the families and a few living centers for our adult children.

> They

> > could each have a small 2 bedroom area for 2 boys or girls to

live in

> > with a common dining area, rec room, livingroom, etc. (like

> retirement

> > homes) The families are close by but our children could learn to

live

> > away from home with dsupport so if we pass away they would feel

> > comfortable with where they are living. There just isn't many

choices

> > for us are there? My son doesn't want to move out and we don't want

> > him to but the future scares me. I know we had a lot of discussion

> > about this a while back but anyone have any new advice? Ideas?

Thanks

> > for reading. Shirley

> >

>

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

I know this might sound whiny, but I have a real problem with feeling grateful for a 6 person home with sprinkler systems...

I want to see NORMAL apartments, condos, houses for our kids that don't have fire doors, sprinkler systems...that are not, in a word...INSTITUTIONAL!

I cannot accept that we should be excited about this...

I could accept a house, apartment or condo with nifty features like alarm clocks that talk to our kids to prompt them to get out of bed, brush their teeth and wash their face...

I could get excited about picture and voice systems that help our kids to be more independent in preparing a meal, packing a lunch and dressing for the right weather...

What do we really want?

Do we have to accept what is out there or should we create the dream...whatever that dream may be?

Most importantly, what do our sons and daughters want? What must they have in order to maximize their independence and enable them to be integrated into their communities and be productive and happy?

Are we asking the right questions?

Who is in control?

Who should be in control of the lives of our beloved children?

Ellen

Ellen Garber Bronfeldegskb@...

Re: Dream

Hi Shirley, Kolomyjec with SHE is building a fabulous low income, handicap accessible apartment building in St. .

suzannesheinc (DOT) org

The units four bedrooms, two bathrooms, one bathroom has a wheel-in-shower, with a common area and a kitchen. The rents are extremely reasonable. Good Luck,

Silvia

On Jun 21, 2007, at 4:16 PM, momofchris2007 wrote:

Ok, just hear me out. My son is 26 with Down Syndrom. I have been thinking about his future living situation and I just started thinking gee wouldn't it be nice if there was a Community with nice town homes for the families and a few living centers for our adult children. They could each have a small 2 bedroom area for 2 boys or girls to live in with a common dining area, rec room, livingroom, etc. (like retirement homes) The families are close by but our children could learn to live away from home with dsupport so if we pass away they would feel comfortable with where they are living. There just isn't many choices for us are there? My son doesn't want to move out and we don't want him to but the future scares me. I know we had a lot of discussion about this a while back but anyone have any new advice? Ideas? Thanks for reading. Shirley

[Guest guest]

www.Institute.org/stateofthestates

Ellen Garber Bronfeldegskb@...

Dream> > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > thinking about his future living situation and I just started> thinking > > gee wouldn't it be nice if there was a Community with nice townhomes > > for the families and a few living centers for our adult children.> They > > could each have a small 2 bedroom area for 2 boys or girls tolive in > > with a common dining area, rec room, livingroom, etc. (like> retirement > > homes) The families are close by but our children could learn tolive > > away from home with dsupport so if we pass away they would feel > > comfortable with where they are living. There just isn't manychoices > > for us are there? My son doesn't want to move out and we don't want > > him to but the future scares me. I know we had a lot of discussion > > about this a while back but anyone have any new advice? Ideas?Thanks > > for reading. Shirley> >>

[Guest guest]

Ellen,

Thanks for the website. I am having some trouble interpreting the

information. I can see that a state would be better for both spending

less money on institutions and having greater waiver spending per

participant. What I don't know is, is it better for the state to spend

money for community services vs IFS or both would be good (given that

most families would like to see their adult children in

individual/group housing. Also, is it better to have more State funds

(shows the state's committment) or more Federal dollars (shows they

are going after funds that are available). I am not familiar with the

HCBS waiver, ICF/MR, or what is meant by participants in day/work and

supported employment. I am just at the beginning of the future

planning and would really like to understand more of the system.

Thanks,

Kathleen

> > >

> > > I believe you and Pam should get together...this sounds like what

> > she has proposed.

> > > Personally, I would like our son Noah to live in our local

community

> > in a condo or apartment, maybe a small townhouse with a " typical "

> > roommate and for free room and board, the roommate would assist

him in

> > the morning to get out and in the late afternoons and evenings as

> > needed. Noah needs, pretty much 24/7 supervision, but I envision

this

> > more " normal " living situation, at least while he is young. I would

> > consider other options as he ages, but a home of his own is my dream

> > for him now and well into the future. I never want an agency to be

> > able to shuffle him around. I want my son to be able to pick his

> > roommates (typical or otherwise) and I definitely want him to

have his

> > own bedroom.

> > > I think there is room for multiple choices and models with the

> > exception of state run institutions, which are not appropriate for

> > anyone...not even medically fragile, in my opinion. Everyone is

> > capable of living in the community...EVERYONE! Go visit other

> > states...it can be done and it is being done elsewhere.

> > > Ellen

> > > Ellen Garber Bronfeld

> > > egskb@

> > > Dream

> > >

> > >

> > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been

> > > thinking about his future living situation and I just started

> > thinking

> > > gee wouldn't it be nice if there was a Community with nice town

> homes

> > > for the families and a few living centers for our adult children.

> > They

> > > could each have a small 2 bedroom area for 2 boys or girls to

> live in

> > > with a common dining area, rec room, livingroom, etc. (like

> > retirement

> > > homes) The families are close by but our children could learn to

> live

> > > away from home with dsupport so if we pass away they would feel

> > > comfortable with where they are living. There just isn't many

> choices

> > > for us are there? My son doesn't want to move out and we don't

want

> > > him to but the future scares me. I know we had a lot of

discussion

> > > about this a while back but anyone have any new advice? Ideas?

> Thanks

> > > for reading. Shirley

> > >

> >

>

[Guest guest]

I find everything confusing. The more I hear the less I understand. The more options I hear about the more confused I get, who to call and what questions to ask and where to start.HoppaGrady <hoppagrady@...> wrote: Ellen,Thanks for the website. I am having some trouble interpreting theinformation. I can see that a state would be better for both spendingless money on institutions and having greater waiver spending perparticipant. What I don't know is, is it better for the state to

spendmoney for community services vs IFS or both would be good (given thatmost families would like to see their adult children inindividual/group housing. Also, is it better to have more State funds(shows the state's committment) or more Federal dollars (shows theyare going after funds that are available). I am not familiar with theHCBS waiver, ICF/MR, or what is meant by participants in day/work andsupported employment. I am just at the beginning of the futureplanning and would really like to understand more of the system.Thanks, Kathleen> > >> > > I believe you and Pam should get together...this sounds like what> > she has proposed.>

> > Personally, I would like our son Noah to live in our localcommunity> > in a condo or apartment, maybe a small townhouse with a "typical"> > roommate and for free room and board, the roommate would assisthim in> > the morning to get out and in the late afternoons and evenings as> > needed. Noah needs, pretty much 24/7 supervision, but I envisionthis> > more "normal" living situation, at least while he is young. I would> > consider other options as he ages, but a home of his own is my dream> > for him now and well into the future. I never want an agency to be> > able to shuffle him around. I want my son to be able to pick his> > roommates (typical or otherwise) and I definitely want him tohave his> > own bedroom.> > > I think there is room for multiple choices and models with the> > exception of state run institutions, which are

not appropriate for> > anyone...not even medically fragile, in my opinion. Everyone is> > capable of living in the community...EVERYONE! Go visit other> > states...it can be done and it is being done elsewhere.> > > Ellen> > > Ellen Garber Bronfeld> > > egskb@> > > Dream> > > > > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > > thinking about his future living situation and I just started> > thinking > > > gee wouldn't it be nice if there was a Community with nice town> homes > > > for the families

and a few living centers for our adult children.> > They > > > could each have a small 2 bedroom area for 2 boys or girls to> live in > > > with a common dining area, rec room, livingroom, etc. (like> > retirement > > > homes) The families are close by but our children could learn to> live > > > away from home with dsupport so if we pass away they would feel > > > comfortable with where they are living. There just isn't many> choices > > > for us are there? My son doesn't want to move out and we don'twant > > > him to but the future scares me. I know we had a lot ofdiscussion > > > about this a while back but anyone have any new advice? Ideas?> Thanks > > > for reading. Shirley> > >> >>

[Guest guest]

I believe the first thing we need to understand is that the money

(power) goes to programs not individuals. So clients needs are only

met if their is a viable program that addresses the needs of your

child. Nothing will be a perfict fit but if you find such a program

then you need to request support each year from the state so some

benifit can trickle down to your child.

Hope I don't sound bitter. No, wait, I am.

Jim

> > > >

> > > > I believe you and Pam should get together...this sounds like

what

> > > she has proposed.

> > > > Personally, I would like our son Noah to live in our local

> community

> > > in a condo or apartment, maybe a small townhouse with

a " typical "

> > > roommate and for free room and board, the roommate would assist

> him in

> > > the morning to get out and in the late afternoons and evenings

as

> > > needed. Noah needs, pretty much 24/7 supervision, but I envision

> this

> > > more " normal " living situation, at least while he is young. I

would

> > > consider other options as he ages, but a home of his own is my

dream

> > > for him now and well into the future. I never want an agency to

be

> > > able to shuffle him around. I want my son to be able to pick his

> > > roommates (typical or otherwise) and I definitely want him to

> have his

> > > own bedroom.

> > > > I think there is room for multiple choices and models with the

> > > exception of state run institutions, which are not appropriate

for

> > > anyone...not even medically fragile, in my opinion. Everyone is

> > > capable of living in the community...EVERYONE! Go visit other

> > > states...it can be done and it is being done elsewhere.

> > > > Ellen

> > > > Ellen Garber Bronfeld

> > > > egskb@

> > > > Dream

> > > >

> > > >

> > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have

been

> > > > thinking about his future living situation and I just started

> > > thinking

> > > > gee wouldn't it be nice if there was a Community with nice

town

> > homes

> > > > for the families and a few living centers for our adult

children.

> > > They

> > > > could each have a small 2 bedroom area for 2 boys or girls to

> > live in

> > > > with a common dining area, rec room, livingroom, etc. (like

> > > retirement

> > > > homes) The families are close by but our children could learn

to

> > live

> > > > away from home with dsupport so if we pass away they would

feel

> > > > comfortable with where they are living. There just isn't many

> > choices

> > > > for us are there? My son doesn't want to move out and we don't

> want

> > > > him to but the future scares me. I know we had a lot of

> discussion

> > > > about this a while back but anyone have any new advice? Ideas?

> > Thanks

> > > > for reading. Shirley

> > > >

> > >

> >

>

[Guest guest]

Jim...you are not alone in feeling bitter. The person-centered rhetoric is not at all a reality in Illinois. There is a one size fits all mentality and funding that does not take into account individual needs. I see families excited when their loved one is "placed" and they are grateful for those slots and programs. It is sickening and it is so wrong. Illinois has a very institutional bias and mind set. This needs to be changed. What can we all do about it?

Educate your local legislators by visiting them regularly and describing to them the reality and then describe your hopes and dreams. Bring your son or daughter along. Write to the governor, write to the legislative leaders telling them what your son or daughter needs and is not getting.

Form large coalitions of families in your area who will also make those visits and write those letters. Let us know what you are doing via IPADDU and others may jump on your band wagon and do the same. Legislators will take notice when there are enough of us to make a difference in votes. We must get on the radar. I recommend supporting the Arc of Illinois initiatives (check out www.arcofillinois.org

Does anyone else have ideas for how to move the state forward in providing the supports and services our children need? I would also tell you that if you desire community based supports and services, consider this: our state is 9th in number of state run institutions. Individuals in state operated facilities are funded at over $100,000 annually, whereas an individual funded for community supports and services receives on average, $33,000 annually...What's wrong with this picture?????

Ellen

egskb@...

Dream> > > > > > > > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > > > thinking about his future living situation and I just started> > > thinking > > > > gee wouldn't it be nice if there was a Community with nice town> > homes > > > > for the families and a few living centers for our adult children.> > > They > > > > could each have a small 2 bedroom area for 2 boys or girls to> > live in > > > > with a common dining area, rec room, livingroom, etc. (like> > > retirement > > > > homes) The families are close by but our children could learn to> > live > > > > away from home with dsupport so if we pass away they would feel > > > > comfortable with where they are living. There just isn't many> > choices > > > > for us are there? My son doesn't want to move out and we don't> want > > > > him to but the future scares me. I know we had a lot of> discussion > > > > about this a while back but anyone have any new advice? Ideas?> > Thanks > > > > for reading. Shirley> > > >> > >> >>

[Guest guest]

Hi Kathleen:

I am not sure what IFS is? You mention it in your post.

The debate between federal and state money is an interesting one...I would guess that increasing the federal dollars coming into to Illinois would always be a good thing...but remember that often federal dollars means compliance with federal rules and regulations...

As for supporting a two tier system...community vs anything else (state institutions, ICF/DD, etc...I would argue strongly in favor of community. Illinois needs to adopt a rate methodology that funds individuals in terms of what they need to live, learn, work and play in the community. PERIOD! (my personal opinion...)

We will be having a guest expert in August or September, Joanell Voigt, Executive Director of Community Alternatives Unlimited, an independent service coordination agency in northern Cook and Lake counties. She would be the perfect person to ask about HCBS, supported employment and workshop options. She can address these topics way better than I can. Please hold on to these great questions and watch for the announcement of when she will be our guest expert.

Ellen

Ellen Garber Bronfeldegskb@...

Dream> > > > > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > > thinking about his future living situation and I just started> > thinking > > > gee wouldn't it be nice if there was a Community with nice town> homes > > > for the families and a few living centers for our adult children.> > They > > > could each have a small 2 bedroom area for 2 boys or girls to> live in > > > with a common dining area, rec room, livingroom, etc. (like> > retirement > > > homes) The families are close by but our children could learn to> live > > > away from home with dsupport so if we pass away they would feel > > > comfortable with where they are living. There just isn't many> choices > > > for us are there? My son doesn't want to move out and we don'twant > > > him to but the future scares me. I know we had a lot ofdiscussion > > > about this a while back but anyone have any new advice? Ideas?> Thanks > > > for reading. Shirley> > >> >>

[Guest guest]

Ellen, Thanks for your reply. I think the hard truth is that we live in a very political state where everything in the budget is up for grabs each year so the the politicians can have fun brokering deals. Let them do that with roads, sewers and whatever hardware the state needs to buy but it is immoral to do that with the developmentally disabled.

-----Original Message-----From: IPADDUnite [mailto:IPADDUnite ]On Behalf Of Ellen BronfeldSent: Monday, June 25, 2007 7:31 PMIPADDUnite Subject: Re: Re: Dream

Jim...you are not alone in feeling bitter. The person-centered rhetoric is not at all a reality in Illinois. There is a one size fits all mentality and funding that does not take into account individual needs. I see families excited when their loved one is "placed" and they are grateful for those slots and programs. It is sickening and it is so wrong. Illinois has a very institutional bias and mind set. This needs to be changed. What can we all do about it?

Educate your local legislators by visiting them regularly and describing to them the reality and then describe your hopes and dreams. Bring your son or daughter along. Write to the governor, write to the legislative leaders telling them what your son or daughter needs and is not getting.

Form large coalitions of families in your area who will also make those visits and write those letters. Let us know what you are doing via IPADDU and others may jump on your band wagon and do the same. Legislators will take notice when there are enough of us to make a difference in votes. We must get on the radar. I recommend supporting the Arc of Illinois initiatives (check out www.arcofillinois.org

Does anyone else have ideas for how to move the state forward in providing the supports and services our children need? I would also tell you that if you desire community based supports and services, consider this: our state is 9th in number of state run institutions. Individuals in state operated facilities are funded at over $100,000 annually, whereas an individual funded for community supports and services receives on average, $33,000 annually...What's wrong with this picture?????

Ellen

egskbsbcglobal (DOT) net

Dream> > > > > > > > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > > > thinking about his future living situation and I just started> > > thinking > > > > gee wouldn't it be nice if there was a Community with nice town> > homes > > > > for the families and a few living centers for our adult children.> > > They > > > > could each have a small 2 bedroom area for 2 boys or girls to> > live in > > > > with a common dining area, rec room, livingroom, etc. (like> > > retirement > > > > homes) The families are close by but our children could learn to> > live > > > > away from home with dsupport so if we pass away they would feel > > > > comfortable with where they are living. There just isn't many> > choices > > > > for us are there? My son doesn't want to move out and we don't> want > > > > him to but the future scares me. I know we had a lot of> discussion > > > > about this a while back but anyone have any new advice? Ideas?> > Thanks > > > > for reading. Shirley> > > >> > >> >>

[Guest guest]

Welcome to the world of disabilities!!! Just when you understand something they will change it or change the name or the acronym!

It is just a constant "putting one foot in front of the other" and HOPE!!!

Get ready for the marathon! It is NOT a sprint!

Dream> > > > > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > > thinking about his future living situation and I just started> > thinking > > > gee wouldn't it be nice if there was a Community with nice town> homes > > > for the families and a few living centers for our adult children.> > They > > > could each have a small 2 bedroom area for 2 boys or girls to> live in > > > with a common dining area, rec room, livingroom, etc. (like> > retirement > > > homes) The families are close by but our children could learn to> live > > > away from home with dsupport so if we pass away they would feel > > > comfortable with where they are living. There just isn't many> choices > > > for us are there? My son doesn't want to move out and we don'twant > > > him to but the future scares me. I know we had a lot ofdiscussion > > > about this a while back but anyone have any new advice? Ideas?> Thanks > > > for reading. Shirley> > >> >>

[Guest guest]

, my son is 26. I thought by now I would understand things and know what to do and where to go. When he was in school I had a lot of great help, teachers, parents, etc. But once you are out it is a new ball game. I would love it if was living on his own or got married but that will not happen. I do not want him in a Nursing home or institution. I want him with other adults in a family type setting. He needs someone around 24/7 to help him make the right choices and decisions but not someone to babysit his every minute. I am still dreaming so if someone has any ideas please let me know.ginar_30 <ginar_30@...> wrote: Welcome to the world of disabilities!!! Just when you understand something they will change it or change the name or the acronym! It is just a constant "putting one foot in front of the other" and HOPE!!! Get ready for the marathon! It is NOT a sprint! Dream> > > > > > > > > Ok, just hear me out. My son is 26

with Down Syndrom. I have been > > > thinking about his future living situation and I just started> > thinking > > > gee wouldn't it be nice if there was a Community with nice town> homes > > > for the families and a few living centers for our adult children.> > They > > > could each have a small 2 bedroom area for 2 boys or girls to> live in > > > with a common dining area, rec room, livingroom, etc. (like> > retirement > > > homes) The families are close by but our children could learn to> live > > > away from home with dsupport so if we pass away they would feel > > > comfortable with where they are living. There just isn't many> choices > > > for us are there? My son doesn't want to move out and we don'twant > > > him to but the future scares me. I know we had a lot

ofdiscussion > > > about this a while back but anyone have any new advice? Ideas?> Thanks > > > for reading. Shirley> > >> >>

[Guest guest]

I agree!!!!

Dream> > > > > > > > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > > > thinking about his future living situation and I just started> > > thinking > > > > gee wouldn't it be nice if there was a Community with nice town> > homes > > > > for the families and a few living centers for our adult children.> > > They > > > > could each have a small 2 bedroom area for 2 boys or girls to> > live in > > > > with a common dining area, rec room, livingroom, etc. (like> > > retirement > > > > homes) The families are close by but our children could learn to> > live > > > > away from home with dsupport so if we pass away they would feel > > > > comfortable with where they are living. There just isn't many> > choices > > > > for us are there? My son doesn't want to move out and we don't> want > > > > him to but the future scares me. I know we had a lot of> discussion > > > > about this a while back but anyone have any new advice? Ideas?> > Thanks > > > > for reading. Shirley> > > >> > >> >>

[Guest guest]

Keep dreaming and exploring!! a little over a generation ago, families were dreaming of education for their children with disabilities! They put their heads and dreams together, and look what we got! Now we need to do the same thing for housing, transportation, recreation, and employment!

Dream> > > > > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > > thinking about his future living situation and I just started> > thinking > > > gee wouldn't it be nice if there was a Community with nice town> homes > > > for the families and a few living centers for our adult children.> > They > > > could each have a small 2 bedroom area for 2 boys or girls to> live in > > > with a common dining area, rec room, livingroom, etc. (like> > retirement > > > homes) The families are close by but our children could learn to> live > > > away from home with dsupport so if we pass away they would feel > > > comfortable with where they are living. There just isn't many> choices > > > for us are there? My son doesn't want to move out and we don'twant > > > him to but the future scares me. I know we had a lot ofdiscussion > > > about this a while back but anyone have any new advice? Ideas?> Thanks > > > for reading. Shirley> > >> >>

[Guest guest]

Illinois is politically and morally corrupt...each and every one of our legislators needs to hear from us. We need to wage an all out campaign to educate them. At any given moment they themselves or someone they love can become disabled. What would they want for their loved one with a disability? Whether the disability was something one was born with, or something that happened along the way, all are treated with an equal amount of disrespect and disregard.

Ellen

Ellen Garber Bronfeldegskb@...

Dream> > > > > > > > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > > > thinking about his future living situation and I just started> > > thinking > > > > gee wouldn't it be nice if there was a Community with nice town> > homes > > > > for the families and a few living centers for our adult children.> > > They > > > > could each have a small 2 bedroom area for 2 boys or girls to> > live in > > > > with a common dining area, rec room, livingroom, etc. (like> > > retirement > > > > homes) The families are close by but our children could learn to> > live > > > > away from home with dsupport so if we pass away they would feel > > > > comfortable with where they are living. There just isn't many> > choices > > > > for us are there? My son doesn't want to move out and we don't> want > > > > him to but the future scares me. I know we had a lot of> discussion > > > > about this a while back but anyone have any new advice? Ideas?> > Thanks > > > > for reading. Shirley> > > >> > >> >>

[Guest guest]

Does anyone know what it would take, I mean what it would really take, for a group of us to start a community for ourselves and kids as they get older? Like a leveled retirement facility where eveyone can be at their own level of independence, yet there is an on site restaurant, pharmancy, medical facility, transportation for work etc... Does something like this exist ANYWHERE!? My daughter is 18 and not yet ready for independent living, but it will come sooner than I expect. I wouldn't mind starting a plan now for that dream of the future for her. So many of us seem to have the same dream, maybe we can get together and get something done. I have no idea financially or legally what this dream would cost, but I sure am willing to find out. Even the idea of purchasing a condo for a few kids that would be properly and adequately supervised would be a dream come true. Anybody out there have any concrete info

yet? Pligge Ellen Bronfeld <egskb@...> wrote: www.Institute.org/stateofthestates Ellen Garber Bronfeldegskbsbcglobal (DOT) net -----

Original Message ----- From: HoppaGrady IPADDUnite Sent: Friday, June 22, 2007 11:31 AM Subject: Re: Dream EllenHow does one access this State of the States report? Kathleen> >> > I believe you and Pam should get together...this sounds like what> she has proposed.> > Personally, I would like our son Noah to live in our local community> in a condo or apartment, maybe a small townhouse with a "typical"> roommate and for free room and board, the roommate would assist him in> the morning to get out and in the late afternoons and evenings as> needed. Noah needs, pretty much 24/7 supervision, but I envision this> more "normal" living situation, at least while he is young. I would> consider other options as he ages, but a home of his own is my dream> for him now and well into the future. I never want an agency to be> able to shuffle him around. I want my son to be able to pick his> roommates (typical or otherwise) and I definitely want

him to have his> own bedroom.> > I think there is room for multiple choices and models with the> exception of state run institutions, which are not appropriate for> anyone...not even medically fragile, in my opinion. Everyone is> capable of living in the community...EVERYONE! Go visit other> states...it can be done and it is being done elsewhere.> > Ellen> > Ellen Garber Bronfeld> > egskb@> > Dream> > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > thinking about his future living situation and I just started> thinking > > gee wouldn't it be nice if

there was a Community with nice townhomes > > for the families and a few living centers for our adult children.> They > > could each have a small 2 bedroom area for 2 boys or girls tolive in > > with a common dining area, rec room, livingroom, etc. (like> retirement > > homes) The families are close by but our children could learn tolive > > away from home with dsupport so if we pass away they would feel > > comfortable with where they are living. There just isn't manychoices > > for us are there? My son doesn't want to move out and we don't want > > him to but the future scares me. I know we had a lot of discussion > > about this a while back but anyone have any new advice? Ideas?Thanks > > for reading. Shirley> >>

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[Guest guest]

Amen.

From:

IPADDUnite [mailto:IPADDUnite ] On Behalf Of Ellen Bronfeld

Sent: Tuesday, June 26, 2007 4:19

PM

IPADDUnite

Subject: Spam:Re: Re:

Dream

Illinois is politically and morally

corrupt...each and every one of our legislators needs to hear from us. We

need to wage an all out campaign to educate them. At any given moment

they themselves or someone they love can become disabled. What would they

want for their loved one with a disability? Whether the disability was

something one was born with, or something that happened along the way, all are

treated with an equal amount of disrespect and disregard.

Ellen

Ellen Garber Bronfeld

egskbsbcglobal (DOT) net

Dream

> > > >

> > > >

> > > > Ok, just hear me out. My son is 26 with Down Syndrom. I

have

been

> > > > thinking about his future living situation and I just

started

> > > thinking

> > > > gee wouldn't it be nice if there was a Community with nice

town

> > homes

> > > > for the families and a few living centers for our adult

children.

> > > They

> > > > could each have a small 2 bedroom area for 2 boys or girls

to

> > live in

> > > > with a common dining area, rec room, livingroom, etc. (like

> > > retirement

> > > > homes) The families are close by but our children could

learn

to

> > live

> > > > away from home with dsupport so if we pass away they would

feel

> > > > comfortable with where they are living. There just isn't

many

> > choices

> > > > for us are there? My son doesn't want to move out and we

don't

> want

> > > > him to but the future scares me. I know we had a lot of

> discussion

> > > > about this a while back but anyone have any new advice?

Ideas?

> > Thanks

> > > > for reading. Shirley

> > > >

> > >

> >

>

[Guest guest]

Ok...I am going to keep saying this...be careful what you wish for...

what you are describing is so dangerously close to a CLOSED community, aka institutional model...It doesn't start out sounding and feeling like that, but in essence that is what it becomes. Look around at your own communities and think about ways to provide mixed housing and include and integrate within the "real" world. I did like your thought about a condo building ...Jane Doyle, Exec. Director of Center for Independent Futures put together a similar deal in the Sienna Gardens condos in ton that provides about 6 units for individuals with disabilities. You can call Center for Independent Futures at 847/328-2044 for further info on that project and other things they are doing.

Ellen

Ellen Garber Bronfeldegskb@...

Dream> > > > > > Ok, just hear me out. My son is 26 with Down Syndrom. I have been > > thinking about his future living situation and I just started> thinking > > gee wouldn't it be nice if there was a Community with nice townhomes > > for the families and a few living centers for our adult children.> They > > could each have a small 2 bedroom area for 2 boys or girls tolive in > > with a common dining area, rec room, livingroom, etc. (like> retirement > > homes) The families are close by but our children could learn tolive > > away from home with dsupport so if we pass away they would feel > > comfortable with where they are living. There just isn't manychoices > > for us are there? My son doesn't want to move out and we don't want > > him to but the future scares me. I know we had a lot of discussion > > about this a while back but anyone have any new advice? Ideas?Thanks > > for reading. Shirley> >>

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[Guest guest]

Ellen,

I agree with you! I have worked so hard to have the

school realized the benefit of my son, Liam, being in

the general ed class. I would hate to think that once

he is able to join the general community on his " own "

that it will all fall apart. He has always benefited

from learning from his typically developing peers, I

would want and expect that type of learning to

continue into his adulthood. I also know that he needs

the right supports to help him function more

independently and efficiently in the gen population.

It would be great if there would be people in his

community that had some knowledge and abilities to

assist in this way.

You seem to have a great ability to verbalize what

many of us parents want for our kids. Thanks for this

group and lets keep the discussions going so we can

know what's going on, what the resources are and what

we need to do for our children.

Kathleen

--- Ellen Bronfeld <egskb@...> wrote:

> Ok...I am going to keep saying this...be careful

> what you wish for...

> what you are describing is so dangerously close to a

> CLOSED community, aka institutional model...It

> doesn't start out sounding and feeling like that,

> but in essence that is what it becomes. Look around

> at your own communities and think about ways to

> provide mixed housing and include and integrate

> within the " real " world. I did like your thought

> about a condo building ...Jane Doyle, Exec. Director

> of Center for Independent Futures put together a

> similar deal in the Sienna Gardens condos in

> ton that provides about 6 units for individuals

> with disabilities. You can call Center for

> Independent Futures at 847/328-2044 for further info

> on that project and other things they are doing.

> Ellen

> Ellen Garber Bronfeld

> egskb@...

> Dream

> > >

> > >

> > > Ok, just hear me out. My son is 26 with

> Down Syndrom. I have been

> > > thinking about his future living situation

> and I just started

> > thinking

> > > gee wouldn't it be nice if there was a

> Community with nice town

> homes

> > > for the families and a few living centers

> for our adult children.

> > They

> > > could each have a small 2 bedroom area for

> 2 boys or girls to

> live in

> > > with a common dining area, rec room,

> livingroom, etc. (like

> > retirement

> > > homes) The families are close by but our

> children could learn to

> live

> > > away from home with dsupport so if we pass

> away they would feel

> > > comfortable with where they are living.

> There just isn't many

> choices

> > > for us are there? My son doesn't want to

> move out and we don't want

> > > him to but the future scares me. I know we

> had a lot of discussion

> > > about this a while back but anyone have

> any new advice? Ideas?

> Thanks

> > > for reading. Shirley

> > >

> >

>

>

>

>

>

>

>

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

> Finding fabulous fares is fun.

> Let FareChase search your favorite travel

> sites to find flight and hotel bargains.

>

=== message truncated ===

Kathleen Hoppa Grady HoppaGrady@...

(217) 359-9089

________________________________________________________________________________\

____

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tool.

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[Guest guest]

I know of a group in Chicago's western suburbs that is seeking to start housing. They looked into a site with more than one building, each of which could room over 10 people (say, 2 to a room). With very little research, they found that the state will not approve a residence for that many people. I can't remember if the limit was 4 or 6, but it was low.Fortunately, they discovered this before making a bid on the property.I do like the condo or apartment building approach, particularly if there were a commons area where residents could gather for a little socialization. My son could manage fairly well on his own as regards housekeeping, but he'd benefit from more socialization than he'd typically encounter in an apartment or condo building.-GailEllen Bronfeld <egskb@...> wrote:

Ok...I am going to keep saying this...be careful what you wish for... what you are describing is so dangerously close to a CLOSED community, aka institutional model...It doesn't start out sounding and feeling like that, but in essence that is what it becomes. Look around at your own communities and think about ways to provide mixed housing and include and integrate within the "real" world. I did like your thought about a condo building ...Jane Doyle, Exec. Director of Center for Independent Futures put together a similar deal in the Sienna Gardens condos in ton that provides about 6 units for individuals with disabilities. You can call Center for Independent Futures at 847/328-2044 for further info on that project and other things they are doing. Ellen Ellen Garber Bronfeldegskbsbcglobal (DOT) net Re: Re:

Dream Does anyone know what it would take, I mean what it would really take, for a group of us to start a community for ourselves and kids as they get older? Like a leveled retirement facility where eveyone can be at their own level of independence, yet there is an on site restaurant, pharmancy, medical facility, transportation for work etc... Does something like this exist ANYWHERE!? My daughter is 18 and not yet ready for independent living, but it will come sooner than I expect. I wouldn't mind starting a plan now for that dream of the future for her. So many of us seem to have the same dream, maybe we can get together and get something done. I have no idea financially or legally what this dream would cost, but I sure am willing to find out. Even the idea of purchasing a condo for a few kids that would be properly and

adequately supervised would be a dream come true. Anybody out there have any concrete info yet? Pligge .

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[Guest guest]

Thanks, Kathleen. I appreciate your support. How good to hear that Liam is being included in school.

I also want to say, that I do respect each family's right to their own hopes and dreams. I only encourage everyone to consider community living options because the more our communities experience our children the more likely it will be that tolerance, acceptance and accomodations will be made. We need to educate our communities and we need to demand equal opportunity for employment and housing. We must also give our children the benefit of our belief in their abilities and allow them to learn and grow by setting the bar higher.

Ellen

Ellen Garber Bronfeldegskb@...

Dream> > > > > > > > > Ok, just hear me out. My son is 26 with> Down Syndrom. I have been > > > thinking about his future living situation> and I just started> > thinking > > > gee wouldn't it be nice if there was a> Community with nice town> homes > > > for the families and a few living centers> for our adult children.> > They > > > could each have a small 2 bedroom area for> 2 boys or girls to> live in > > > with a common dining area, rec room,> livingroom, etc. (like> > retirement > > > homes) The families are close by but our> children could learn to> live > > > away from home with dsupport so if we pass> away they would feel > > > comfortable with where they are living.> There just isn't many> choices > > > for us are there? My son doesn't want to> move out and we don't want > > > him to but the future scares me. I know we> had a lot of discussion > > > about this a while back but anyone have> any new advice? Ideas?> Thanks > > > for reading. Shirley> > >> >> > > > > > >----------------------------------------------------------> Finding fabulous fares is fun.> Let FareChase search your favorite travel> sites to find flight and hotel bargains.> === message truncated ===Kathleen Hoppa Grady HoppaGrady (217) 359-9089__________________________________________________________Choose the right car based on your needs. Check out Autos new Car Finder tool.http://autos./carfinder/

[Guest guest]

I am grateful that this group could not build another mini-institution.

What are people thinking...putting 10 people in group homes!!!

Sorry but this is way beyond what I would find acceptable!

They might as well settle for an ICF/DD somewhere...they exist and there are probably SLOTS available in Illinois...

Ellen

Ellen Garber Bronfeldegskb@...

Re: Re: Dream

Does anyone know what it would take, I mean what it would really take, for a group of us to start a community for ourselves and kids as they get older? Like a leveled retirement facility where eveyone can be at their own level of independence, yet there is an on site restaurant, pharmancy, medical facility, transportation for work etc...

Does something like this exist ANYWHERE!?

My daughter is 18 and not yet ready for independent living, but it will come sooner than I expect. I wouldn't mind starting a plan now for that dream of the future for her. So many of us seem to have the same dream, maybe we can get together and get something done. I have no idea financially or legally what this dream would cost, but I sure am willing to find out.

Even the idea of purchasing a condo for a few kids that would be properly and adequately supervised would be a dream come true.

Anybody out there have any concrete info yet?

Pligge

..

Get the toolbar and be alerted to new email wherever you're surfing.

[Guest guest]

Hi -

As many of you might recall, I have been exploring the issue of residential living as it applies to my son Josh (18) and our family. I don't think the answer is starting from scratch. Here's my thinking right now.

We found an existing community in Indian Head Park, Acacia. There are several 6 story condo buildings as well as surrounding townhomes. Acacia is anchored with a community center complete with indoor pool, library, fitness room, huge main common room and kitchen facilities. There is also an outdoor swimming pool. The PACE bus services Acacia bringing commuters to the Western Springs train station and back. There are tennis courts and basketball courts, hiking trails and lots of gardens and mature trees.

We are considering purchasing a condo in this community. If you knew that we lived there, would you consider moving there? How about you?

Wouldn't it be easier to slowly integrate families with children with disabilities into the community, keeping a balanced ratio of families with "typical" kids and empty nesters? Then, when friendships are built and familiarity with the community grows, form a cooperative, and begin to identify and place appropriate supports for adults with DD to live independently. Parents can stick around in thier condo or not. This would be far from a segregated community. It would become a fully integrated subdivison that happens to include 6 story condo buildings, some of which are owned by people with disabilities and families with children who have disabilities.

Thoughts?

Pam & Josh

Western Springs

[Guest guest]

Pam, sounds very interesting. Any idea of prices for Condo's or town homes?pam_harris@... wrote: Hi - As many of you might recall, I have been exploring the issue of residential living as it applies to my son Josh (18) and our family. I don't think the answer is starting from scratch. Here's my thinking right now. We found an existing

community in Indian Head Park, Acacia. There are several 6 story condo buildings as well as surrounding townhomes. Acacia is anchored with a community center complete with indoor pool, library, fitness room, huge main common room and kitchen facilities. There is also an outdoor swimming pool. The PACE bus services Acacia bringing commuters to the Western Springs train station and back. There are tennis courts and basketball courts, hiking trails and lots of gardens and mature trees. We are considering purchasing a condo in this community. If you knew that we lived there, would you consider moving there? How about you? Wouldn't it be easier to slowly integrate families with children with disabilities into the community, keeping a balanced ratio of families with "typical" kids and empty nesters? Then, when friendships are built and familiarity with the

community grows, form a cooperative, and begin to identify and place appropriate supports for adults with DD to live independently. Parents can stick around in thier condo or not. This would be far from a segregated community. It would become a fully integrated subdivison that happens to include 6 story condo buildings, some of which are owned by people with disabilities and families with children who have disabilities. Thoughts? Pam & Josh Western Springs

[Guest guest]

I think many of us couldn't afford that condo plus it's monthly

maintenance. I do agree that it is probably better for us, as the

family, to set up our own type of housing for our children.

>

> Hi -

> As many of you might recall, I have been exploring the issue of

residential living as it applies to my son Josh (18) and our family.

I don't think the answer is starting from scratch. Here's my thinking

right now.

> We found an existing community in Indian Head Park, Acacia. There

are several 6 story condo buildings as well as surrounding townhomes.

Acacia is anchored with a community center complete with indoor pool,

library, fitness room, huge main common room and kitchen facilities.

There is also an outdoor swimming pool. The PACE bus services Acacia

bringing commuters to the Western Springs train station and back.

There are tennis courts and basketball courts, hiking trails and lots

of gardens and mature trees.

> We are considering purchasing a condo in this community. If you

knew that we lived there, would you consider moving there? How about

you?

> Wouldn't it be easier to slowly integrate families with children

with disabilities into the community, keeping a balanced ratio of

families with " typical " kids and empty nesters? Then, when

friendships are built and familiarity with the community grows, form

a cooperative, and begin to identify and place appropriate supports

for adults with DD to live independently. Parents can stick around in

thier condo or not. This would be far from a segregated community. It

would become a fully integrated subdivison that happens to include 6

story condo buildings, some of which are owned by people with

disabilities and families with children who have disabilities.

> Thoughts?

> Pam & Josh

> Western Springs

>