Re: Dismal options for adults aging out of transition programs

[Guest guest]

and we have a state rep who says she cannot do anything about IT. So where

do we go? More meetings on transition services that don't exist.

t

[Guest guest]

What about the DRS Home Services Program? Perhaps he might qualify for

services...

Ellen

Ellen Garber Bronfeld

egskb@...

Dismal options for adults aging out of transition

programs

IPADDUnite

Date: Thursday, January 7, 2010, 8:32 AM

I tried over the past month to file an application for services for my

daughter who will be aging out of transition soon. I jumped through all the

hoops to get to this point and was told yesterday that grants for day

programs will soon be turned into waiver programs. I was also told not even

bother applying. It appears that the criteria now is so strict, due to budget

cuts, that only those who are homeless will be helped. Files from this

agency concerning single caretakers with health conditions, who are over the

age of 70, are being turned down! The only way we might get services is if

we are pulled off the PUNS list. With the size of the PUNS list, my

daughter would likely be a senior citizen before this would happen!

Those of us with children currently aging out of high school will be left

with no, or very few, options for our young adults.

A situation, which was bad already, is getting worse and not likely to get

better any time soon.

Lynn Wetterberg

[Guest guest]

What about the DRS Home Services Program? Perhaps he might qualify for

services...

Ellen

Ellen Garber Bronfeld

egskb@...

Dismal options for adults aging out of transition

programs

IPADDUnite

Date: Thursday, January 7, 2010, 8:32 AM

I tried over the past month to file an application for services for my

daughter who will be aging out of transition soon. I jumped through all the

hoops to get to this point and was told yesterday that grants for day

programs will soon be turned into waiver programs. I was also told not even

bother applying. It appears that the criteria now is so strict, due to budget

cuts, that only those who are homeless will be helped. Files from this

agency concerning single caretakers with health conditions, who are over the

age of 70, are being turned down! The only way we might get services is if

we are pulled off the PUNS list. With the size of the PUNS list, my

daughter would likely be a senior citizen before this would happen!

Those of us with children currently aging out of high school will be left

with no, or very few, options for our young adults.

A situation, which was bad already, is getting worse and not likely to get

better any time soon.

Lynn Wetterberg

[Guest guest]

I totally agree with your Laurie, it's up to us as parents and I appreciate many

simple things with that my friends and family will never understand. I

guess I try to make lemonade out of the lemons although I think I'm getting an

ulcer doing it!

H.

Re: Dismal options for adults aging out of transition

programs

,

I hear what you're saying about the disconnect between some school staffs and

heir knowledge of the agencies or services...but...going out on a big limb

ere...I also think it's not really their job to hold the parents' hands

hroughout this process. I think it's very much up to each and every one of us

o seek out information, go to the god awful meetings, read, educate ourselves,

tc. They are required to 'link' us to the outside agencies, not necessarily be

elling us or knowing what the agencies can or cannot do for us. I think that's

p to each of us.

Yes, it's unfortunate and it sucks big time that we're in the mess we're in, but

f we fault the schools I think we also need to fault ourselves for not knowing

hat is going on out there in the so-called adult service world.

Just my two cents.

..

Re: Dismal options for adults aging out of transition

rograms

IPADDUnite

Date: Thursday, January 7, 2010, 7:33 PM

Oh lets make it even more dismal...The PUNS list...I hav heard there are

something like 17,0000 people on the list and we express shock and dismay.

What really is upsetting is the true number is no where near 17, 000. Every

where I go, Special Olympics, parents meetings etc, there is always a large

number of people who have not signed onto PUNS.

I would bet it is thousands more..10-15, 000...

People are bullied to not do PUNS, dont know about it, assume they won't

get anything anyway, or figure their kid is not disabled.

[Guest guest]

I totally agree with your Laurie, it's up to us as parents and I appreciate many

simple things with that my friends and family will never understand. I

guess I try to make lemonade out of the lemons although I think I'm getting an

ulcer doing it!

H.

Re: Dismal options for adults aging out of transition

programs

,

I hear what you're saying about the disconnect between some school staffs and

heir knowledge of the agencies or services...but...going out on a big limb

ere...I also think it's not really their job to hold the parents' hands

hroughout this process. I think it's very much up to each and every one of us

o seek out information, go to the god awful meetings, read, educate ourselves,

tc. They are required to 'link' us to the outside agencies, not necessarily be

elling us or knowing what the agencies can or cannot do for us. I think that's

p to each of us.

Yes, it's unfortunate and it sucks big time that we're in the mess we're in, but

f we fault the schools I think we also need to fault ourselves for not knowing

hat is going on out there in the so-called adult service world.

Just my two cents.

..

Re: Dismal options for adults aging out of transition

rograms

IPADDUnite

Date: Thursday, January 7, 2010, 7:33 PM

Oh lets make it even more dismal...The PUNS list...I hav heard there are

something like 17,0000 people on the list and we express shock and dismay.

What really is upsetting is the true number is no where near 17, 000. Every

where I go, Special Olympics, parents meetings etc, there is always a large

number of people who have not signed onto PUNS.

I would bet it is thousands more..10-15, 000...

People are bullied to not do PUNS, dont know about it, assume they won't

get anything anyway, or figure their kid is not disabled.

[Guest guest]

You guys always know how to cheer me up, although instead of lemonade I'll reach

for, you guessed it, chocolate. 

Thanks to all for the good feedback and suggestions on the Governor's race

questions.  I think we're almost done and will get them out tomorrow. 

Night all,

L.

Re: Dismal options for adults aging out of transition

rograms

IPADDUnite

Date: Thursday, January 7, 2010, 7:33 PM

Oh lets make it even more dismal...The PUNS list...I hav heard there are

something like 17,0000 people on the list and we express shock and dismay.

What really is upsetting is the true number is no where near 17, 000. Every

where I go, Special Olympics, parents meetings etc, there is always a large

number of people who have not signed onto PUNS.

I would bet it is thousands more..10-15, 000...

People are bullied to not do PUNS, dont know about it, assume they won't

get anything anyway, or figure their kid is not disabled.

[Guest guest]

You guys always know how to cheer me up, although instead of lemonade I'll reach

for, you guessed it, chocolate. 

Thanks to all for the good feedback and suggestions on the Governor's race

questions.  I think we're almost done and will get them out tomorrow. 

Night all,

L.

Re: Dismal options for adults aging out of transition

rograms

IPADDUnite

Date: Thursday, January 7, 2010, 7:33 PM

Oh lets make it even more dismal...The PUNS list...I hav heard there are

something like 17,0000 people on the list and we express shock and dismay.

What really is upsetting is the true number is no where near 17, 000. Every

where I go, Special Olympics, parents meetings etc, there is always a large

number of people who have not signed onto PUNS.

I would bet it is thousands more..10-15, 000...

People are bullied to not do PUNS, dont know about it, assume they won't

get anything anyway, or figure their kid is not disabled.

[Guest guest]

I have been reading the posts in the thread all day--have had a few other irons

in the fire to attend to before I was able to add my own two cents.

My son is 29 years old and has autism. We have tried a number of things for him

after he aged out of school in 2001. Right now, he has his own little envelope

stuffing business and doesn't do a lot else, since he has had a few health

issues in the past few years. He seems to be back on track, finally, so am

exploring some other things for him as well. He loves envelope stuffing and is

very, very good at it. He is very busy about two weeks a month and

then.....nothing....at which time, I get out academic projects and art projects

and music projects and other vocational projects......Like Jill, sometimes I

feel like a flippin' Cruise Director, having to do EVERYTHING to keep him

amused.

That being said, I want to comment on a few things brought up here. I don't

think it is an especially good idea to have your school district sign you up for

anything in the adult world. It is not just they are not familiar with

programs, agencies, etc. but if they had to prepare out kids for the real,

dismal, nothing-jobs we have to choose from and knew about it, we would never

get the services and vocational training we all fight for when we enter the IEP

meeting rooms. Do I sound cynical? Please refer to #2 of my Resolutions, 2010.

I have to say, our school district did present adult programs to

me....sheepishly, because they knew what crappy choices I had to choose from and

our HS program was stellar. Have any of you had this tired, old adage presented

to you in a special ed meeting--- " why buy a Cadillac when a Chevrolet will do " ?

Well, the Homewood-Flossmoor High School inclusion program was in wasn't

just a Cadillac, it was a Jaguar, a Lexus, a Mercedes-Benz and the adult program

world he is stuck with in IL is a rusty, old Yugo on cinder blocks, stuck in the

driveway!

How do we change it? I think all of us are trying, in our own ways. I was

going to suggest to Laurie and Ellen our question of the month next time should

be--if you could design a state-wide program for adults,what would you include

and how would you structure it? No total program would fit all of our children,

so how could you structure it so you could plug in your own needs and get the

perfect program for the person? The money following the person would be a great

place to start but, what about those of us who are tired of having to constantly

re-invent the wheel for our kids? Just wanted you to get thinking about it--we

know what's NOT working, so, in a perfect world, how would we get it to work?

Marie

[Guest guest]

I have been reading the posts in the thread all day--have had a few other irons

in the fire to attend to before I was able to add my own two cents.

My son is 29 years old and has autism. We have tried a number of things for him

after he aged out of school in 2001. Right now, he has his own little envelope

stuffing business and doesn't do a lot else, since he has had a few health

issues in the past few years. He seems to be back on track, finally, so am

exploring some other things for him as well. He loves envelope stuffing and is

very, very good at it. He is very busy about two weeks a month and

then.....nothing....at which time, I get out academic projects and art projects

and music projects and other vocational projects......Like Jill, sometimes I

feel like a flippin' Cruise Director, having to do EVERYTHING to keep him

amused.

That being said, I want to comment on a few things brought up here. I don't

think it is an especially good idea to have your school district sign you up for

anything in the adult world. It is not just they are not familiar with

programs, agencies, etc. but if they had to prepare out kids for the real,

dismal, nothing-jobs we have to choose from and knew about it, we would never

get the services and vocational training we all fight for when we enter the IEP

meeting rooms. Do I sound cynical? Please refer to #2 of my Resolutions, 2010.

I have to say, our school district did present adult programs to

me....sheepishly, because they knew what crappy choices I had to choose from and

our HS program was stellar. Have any of you had this tired, old adage presented

to you in a special ed meeting--- " why buy a Cadillac when a Chevrolet will do " ?

Well, the Homewood-Flossmoor High School inclusion program was in wasn't

just a Cadillac, it was a Jaguar, a Lexus, a Mercedes-Benz and the adult program

world he is stuck with in IL is a rusty, old Yugo on cinder blocks, stuck in the

driveway!

How do we change it? I think all of us are trying, in our own ways. I was

going to suggest to Laurie and Ellen our question of the month next time should

be--if you could design a state-wide program for adults,what would you include

and how would you structure it? No total program would fit all of our children,

so how could you structure it so you could plug in your own needs and get the

perfect program for the person? The money following the person would be a great

place to start but, what about those of us who are tired of having to constantly

re-invent the wheel for our kids? Just wanted you to get thinking about it--we

know what's NOT working, so, in a perfect world, how would we get it to work?

Marie

[Guest guest]

Our family's motto is " When life hands you lemons, make lemonade, or if it

really sucks, an Old Fashioned. "

Marie

>

>

>

> You guys always know how to cheer me up, although instead of lemonade I'll

reach for, you guessed it, chocolate. 

>

>

>

> Thanks to all for the good feedback and suggestions on the Governor's race

questions.  I think we're almost done and will get them out tomorrow. 

>

>

>

> Night all,

>

> L.

>

[Guest guest]

Our family's motto is " When life hands you lemons, make lemonade, or if it

really sucks, an Old Fashioned. "

Marie

>

>

>

> You guys always know how to cheer me up, although instead of lemonade I'll

reach for, you guessed it, chocolate. 

>

>

>

> Thanks to all for the good feedback and suggestions on the Governor's race

questions.  I think we're almost done and will get them out tomorrow. 

>

>

>

> Night all,

>

> L.

>

[Guest guest]

While I agree with you Laurie, that as a parent, the buck stops here...so many

families have the need for both parents to be working full time...School

Transition Specialists, or Social Workers or even Psychologists are often

pitifully under-informed...Many families are just stretched and stressed to the

max...sleepless nights from challenging kids, messes to clean up, a house to

keep up...I expect educational professionals working with aging out students to

have a very good command of the landscape to which they are transitioning

students...at the very least, they should be knowledgeable about what is

available in their own community.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Dismal options for adults aging out of transition

programs

IPADDUnite

Date: Thursday, January 7, 2010, 7:33 PM

Oh lets make it even more dismal...The PUNS list...I hav heard there are

something like 17,0000 people on the list and we express shock and dismay.

What really is upsetting is the true number is no where near 17, 000. Every

where I go, Special Olympics, parents meetings etc, there is always a large

number of people who have not signed onto PUNS.

I would bet it is thousands more..10-15, 000...

People are bullied to not do PUNS, dont know about it, assume they won't

get anything anyway, or figure their kid is not disabled.

[Guest guest]

While I agree with you Laurie, that as a parent, the buck stops here...so many

families have the need for both parents to be working full time...School

Transition Specialists, or Social Workers or even Psychologists are often

pitifully under-informed...Many families are just stretched and stressed to the

max...sleepless nights from challenging kids, messes to clean up, a house to

keep up...I expect educational professionals working with aging out students to

have a very good command of the landscape to which they are transitioning

students...at the very least, they should be knowledgeable about what is

available in their own community.

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Dismal options for adults aging out of transition

programs

IPADDUnite

Date: Thursday, January 7, 2010, 7:33 PM

Oh lets make it even more dismal...The PUNS list...I hav heard there are

something like 17,0000 people on the list and we express shock and dismay.

What really is upsetting is the true number is no where near 17, 000. Every

where I go, Special Olympics, parents meetings etc, there is always a large

number of people who have not signed onto PUNS.

I would bet it is thousands more..10-15, 000...

People are bullied to not do PUNS, dont know about it, assume they won't

get anything anyway, or figure their kid is not disabled.

[Guest guest]

Interesting discussion about transition...

I was struck by something that Laurie said, because I have heard it from our

legislators on the north shore...

" There's a local state legislator in Naperville who has decided it's time to

help her constituents see the light about adult services -- she's hosted and

continues to host transition-oriented forums which is good on the one hand -- on

the other hand, the message is pretty much a 'pull yourself up by your

bootstaps' kind of message for our west suburban families. Take care of your own

family member. Plan better. Start planning earlier. (That's financial planning

she's referring to.) I'll be curious to see how long it takes for her

constituents to get her message, which is that government, particularly state

government, cannot be looked on as a perpetual funder of typical, relatively

affluent west suburbanites' and their desired lifestyles for their adult kids

with disabilities. Personal responsibility is the new name of the game here in

my little corner of the state. "

I would agree to some extent, but not all families on the north shore and not

all families in Naperville are wealthy.

Ellen

Ellen Garber Bronfeld

egskb@...

[Guest guest]

Interesting discussion about transition...

I was struck by something that Laurie said, because I have heard it from our

legislators on the north shore...

" There's a local state legislator in Naperville who has decided it's time to

help her constituents see the light about adult services -- she's hosted and

continues to host transition-oriented forums which is good on the one hand -- on

the other hand, the message is pretty much a 'pull yourself up by your

bootstaps' kind of message for our west suburban families. Take care of your own

family member. Plan better. Start planning earlier. (That's financial planning

she's referring to.) I'll be curious to see how long it takes for her

constituents to get her message, which is that government, particularly state

government, cannot be looked on as a perpetual funder of typical, relatively

affluent west suburbanites' and their desired lifestyles for their adult kids

with disabilities. Personal responsibility is the new name of the game here in

my little corner of the state. "

I would agree to some extent, but not all families on the north shore and not

all families in Naperville are wealthy.

Ellen

Ellen Garber Bronfeld

egskb@...

[Guest guest]

I live in a community--the south suburbs--and at least in my village and

neighboring towns, that is relatively affluent. We have some residents you may

have even heard of--Kendall Gill, the late Koko , Kenny Norman and Buddy

Guy--and some you have not but perhaps know the names of their businesses. We

are upper middle class folks, caring about their children's education and who

believe in diversity.

A few towns over, we have the poorest suburb in the nation, a farming community

which specializes in onions, a Ford plant and a paint plant. We have an Italian

ethnic enclave, African-American royalty, migrant workers and an area that has

an alarming number of " gentlemen's " clubs. I regularly shop in a squarely,

middle class, blue collar suburb that could be compared to Berwyn (where we used

to live when Chuck was a resident)except for the color of the residents' skin.

All within about a ten mile radius.

We have legislators who lump us all together and who believe THEY know what is

best for our disabled children. In some ways, I would love to have Laurie's

legislators because, at least they would be telling US to make the decisions,

instead of feeling paternalistic and patronizing. We are told not to

worry--they will take care of everything.

This is an interesting discussion and one we should have here at IPADD

regularly.

Marie

>

> Interesting discussion about transition...

> I was struck by something that Laurie said, because I have heard it from our

legislators on the north shore...

>

> " There's a local state legislator in Naperville who has decided it's time to

help her constituents see the light about adult services -- she's hosted and

continues to host transition-oriented forums which is good on the one hand -- on

the other hand, the message is pretty much a 'pull yourself up by your

bootstaps' kind of message for our west suburban families. Take care of your own

family member. Plan better. Start planning earlier. (That's financial planning

she's referring to.) I'll be curious to see how long it takes for her

constituents to get her message, which is that government, particularly state

government, cannot be looked on as a perpetual funder of typical, relatively

affluent west suburbanites' and their desired lifestyles for their adult kids

with disabilities. Personal responsibility is the new name of the game here in

my little corner of the state. "

>

> I would agree to some extent, but not all families on the north shore and not

all families in Naperville are wealthy.

>

> Ellen

>

>

> Ellen Garber Bronfeld

> egskb@...

>

>

>

>

>

>

>

>

[Guest guest]

I live in a community--the south suburbs--and at least in my village and

neighboring towns, that is relatively affluent. We have some residents you may

have even heard of--Kendall Gill, the late Koko , Kenny Norman and Buddy

Guy--and some you have not but perhaps know the names of their businesses. We

are upper middle class folks, caring about their children's education and who

believe in diversity.

A few towns over, we have the poorest suburb in the nation, a farming community

which specializes in onions, a Ford plant and a paint plant. We have an Italian

ethnic enclave, African-American royalty, migrant workers and an area that has

an alarming number of " gentlemen's " clubs. I regularly shop in a squarely,

middle class, blue collar suburb that could be compared to Berwyn (where we used

to live when Chuck was a resident)except for the color of the residents' skin.

All within about a ten mile radius.

We have legislators who lump us all together and who believe THEY know what is

best for our disabled children. In some ways, I would love to have Laurie's

legislators because, at least they would be telling US to make the decisions,

instead of feeling paternalistic and patronizing. We are told not to

worry--they will take care of everything.

This is an interesting discussion and one we should have here at IPADD

regularly.

Marie

>

> Interesting discussion about transition...

> I was struck by something that Laurie said, because I have heard it from our

legislators on the north shore...

>

> " There's a local state legislator in Naperville who has decided it's time to

help her constituents see the light about adult services -- she's hosted and

continues to host transition-oriented forums which is good on the one hand -- on

the other hand, the message is pretty much a 'pull yourself up by your

bootstaps' kind of message for our west suburban families. Take care of your own

family member. Plan better. Start planning earlier. (That's financial planning

she's referring to.) I'll be curious to see how long it takes for her

constituents to get her message, which is that government, particularly state

government, cannot be looked on as a perpetual funder of typical, relatively

affluent west suburbanites' and their desired lifestyles for their adult kids

with disabilities. Personal responsibility is the new name of the game here in

my little corner of the state. "

>

> I would agree to some extent, but not all families on the north shore and not

all families in Naperville are wealthy.

>

> Ellen

>

>

> Ellen Garber Bronfeld

> egskb@...

>

>

>

>

>

>

>

>

[Guest guest]

Yes, of course you are right about not everyone being wealthy! I suspect

our legislator is not thinking you need to be technically wealthy, though...just

not destitute. So everyone who's not destitute and has a roof over their heads

and over the head of the individual with the disability is doing ok. I believe

the she believes (and possibly quite a few others) it's the card our family has

been dealt, so plan your finances meticulously and don't expect the gov't to

support your kid.

L.

Re: Dismal options for adults aging out of transition

programs

Interesting discussion about transition...

I was struck by something that Laurie said, because I have heard it from our

legislators on the north shore...

" There's a local state legislator in Naperville who has decided it's time to

help her constituents see the light about adult services -- she's hosted and

continues to host transition-oriented forums which is good on the one hand -- on

the other hand, the message is pretty much a 'pull yourself up by your

bootstaps' kind of message for our west suburban families. Take care of your own

family member. Plan better. Start planning earlier. (That's financial planning

she's referring to.) I'll be curious to see how long it takes for her

constituents to get her message, which is that government, particularly state

government, cannot be looked on as a perpetual funder of typical, relatively

affluent west suburbanites' and their desired lifestyles for their adult kids

with disabilities. Personal responsibility is the new name of the game here in

my little corner of the state. "

I would agree to some extent, but not all families on the north shore and not

all families in Naperville are wealthy.

Ellen

Ellen Garber Bronfeld

egskb@...

[Guest guest]

Yes, of course you are right about not everyone being wealthy! I suspect

our legislator is not thinking you need to be technically wealthy, though...just

not destitute. So everyone who's not destitute and has a roof over their heads

and over the head of the individual with the disability is doing ok. I believe

the she believes (and possibly quite a few others) it's the card our family has

been dealt, so plan your finances meticulously and don't expect the gov't to

support your kid.

L.

Re: Dismal options for adults aging out of transition

programs

Interesting discussion about transition...

I was struck by something that Laurie said, because I have heard it from our

legislators on the north shore...

" There's a local state legislator in Naperville who has decided it's time to

help her constituents see the light about adult services -- she's hosted and

continues to host transition-oriented forums which is good on the one hand -- on

the other hand, the message is pretty much a 'pull yourself up by your

bootstaps' kind of message for our west suburban families. Take care of your own

family member. Plan better. Start planning earlier. (That's financial planning

she's referring to.) I'll be curious to see how long it takes for her

constituents to get her message, which is that government, particularly state

government, cannot be looked on as a perpetual funder of typical, relatively

affluent west suburbanites' and their desired lifestyles for their adult kids

with disabilities. Personal responsibility is the new name of the game here in

my little corner of the state. "

I would agree to some extent, but not all families on the north shore and not

all families in Naperville are wealthy.

Ellen

Ellen Garber Bronfeld

egskb@...

[Guest guest]

If we don't help citizens in need in our country, how do we justify foreign

aid...do we tell the poor in Africa that they were dealt a bad card by being

born there? Assistance to immigrants...they were dealt a bad card by being born

across the border? Who counts? Who comes first? There are no easy answers. Do

we make assistance to the disabled " means " tested based on family wealth?

The basic premise for Medicaid and SSI for adults with disabilities is, that

they themselves are indigent and unable to support themselves...parents are

supposedly no longer responsible for their children once they reach the " age of

majority " at 18...

I think our legislators need to continue to hear our stories...we don't want

assistance out of pity, but we need substantive discussion about how and where

money is spent...such as the lost Medicaid matching dollars at Howe...the large

amount of money that goes into our institutional system partially because of

political systems rather than human service systems...

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Dismal options for adults aging out of transition

programs

Interesting discussion about transition...

I was struck by something that Laurie said, because I have heard it from our

legislators on the north shore...

" There's a local state legislator in Naperville who has decided it's time to

help her constituents see the light about adult services -- she's hosted and

continues to host transition-oriented forums which is good on the one hand -- on

the other hand, the message is pretty much a 'pull yourself up by your

bootstaps' kind of message for our west suburban families. Take care of your own

family member. Plan better. Start planning earlier. (That's financial planning

she's referring to.) I'll be curious to see how long it takes for her

constituents to get her message, which is that government, particularly state

government, cannot be looked on as a perpetual funder of typical, relatively

affluent west suburbanites' and their desired lifestyles for their adult kids

with disabilities. Personal responsibility is the new name of the game here in

my little corner of the state. "

I would agree to some extent, but not all families on the north shore and not

all families in Naperville are wealthy.

Ellen

Ellen Garber Bronfeld

egskb@...

[Guest guest]

If we don't help citizens in need in our country, how do we justify foreign

aid...do we tell the poor in Africa that they were dealt a bad card by being

born there? Assistance to immigrants...they were dealt a bad card by being born

across the border? Who counts? Who comes first? There are no easy answers. Do

we make assistance to the disabled " means " tested based on family wealth?

The basic premise for Medicaid and SSI for adults with disabilities is, that

they themselves are indigent and unable to support themselves...parents are

supposedly no longer responsible for their children once they reach the " age of

majority " at 18...

I think our legislators need to continue to hear our stories...we don't want

assistance out of pity, but we need substantive discussion about how and where

money is spent...such as the lost Medicaid matching dollars at Howe...the large

amount of money that goes into our institutional system partially because of

political systems rather than human service systems...

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Dismal options for adults aging out of transition

programs

Interesting discussion about transition...

I was struck by something that Laurie said, because I have heard it from our

legislators on the north shore...

" There's a local state legislator in Naperville who has decided it's time to

help her constituents see the light about adult services -- she's hosted and

continues to host transition-oriented forums which is good on the one hand -- on

the other hand, the message is pretty much a 'pull yourself up by your

bootstaps' kind of message for our west suburban families. Take care of your own

family member. Plan better. Start planning earlier. (That's financial planning

she's referring to.) I'll be curious to see how long it takes for her

constituents to get her message, which is that government, particularly state

government, cannot be looked on as a perpetual funder of typical, relatively

affluent west suburbanites' and their desired lifestyles for their adult kids

with disabilities. Personal responsibility is the new name of the game here in

my little corner of the state. "

I would agree to some extent, but not all families on the north shore and not

all families in Naperville are wealthy.

Ellen

Ellen Garber Bronfeld

egskb@...

[Guest guest]

Marie's brilliant, as usual:

I have to say, our school district did present adult programs to

me....sheepishly, because they knew what crappy choices I had to choose

from and our HS program was stellar. Have any of you had this tired,

old adage presented to you in a special ed meeting--- " why buy a

Cadillac when a Chevrolet will do " ? Well, the Homewood-Flossmoor High

School inclusion program was in wasn't just a Cadillac, it was

a Jaguar, a Lexus, a Mercedes-Benz and the adult program world he is

stuck with in IL is a rusty, old Yugo on cinder blocks, stuck in the

driveway!

It is very challenging right now for anyone who is aging out of transition. 

It's hard to tell how much the economy is affecting what's going on. 

From the view at our house, I can tell you that most warehouse jobs Neal applies

for are now asking for an emailed resume.  There is absolutely NOTHING in his

resume that makes you think that he is anything but a young man who graduated in

2007 and has a bit of warehouse experience.  Yet he has rarely had any phone

calls following up.  It's not the disability; these folks haven't even found

that out yet.

Our kids are at a disadvantage in IL.  What's there for adults is a Yugo.  What,

I suspect, is even worse is that IL is in the midst of a financial crisis.  It's

like having a Yugo without $$$ to pay for gasoline, or repairs, or a replacement

car.  The dismal options are going to get worse if the agencies providing those

options don't get paid by the state and shut down.

-Gail

[Guest guest]

Marie's brilliant, as usual:

I have to say, our school district did present adult programs to

me....sheepishly, because they knew what crappy choices I had to choose

from and our HS program was stellar. Have any of you had this tired,

old adage presented to you in a special ed meeting--- " why buy a

Cadillac when a Chevrolet will do " ? Well, the Homewood-Flossmoor High

School inclusion program was in wasn't just a Cadillac, it was

a Jaguar, a Lexus, a Mercedes-Benz and the adult program world he is

stuck with in IL is a rusty, old Yugo on cinder blocks, stuck in the

driveway!

It is very challenging right now for anyone who is aging out of transition. 

It's hard to tell how much the economy is affecting what's going on. 

From the view at our house, I can tell you that most warehouse jobs Neal applies

for are now asking for an emailed resume.  There is absolutely NOTHING in his

resume that makes you think that he is anything but a young man who graduated in

2007 and has a bit of warehouse experience.  Yet he has rarely had any phone

calls following up.  It's not the disability; these folks haven't even found

that out yet.

Our kids are at a disadvantage in IL.  What's there for adults is a Yugo.  What,

I suspect, is even worse is that IL is in the midst of a financial crisis.  It's

like having a Yugo without $$$ to pay for gasoline, or repairs, or a replacement

car.  The dismal options are going to get worse if the agencies providing those

options don't get paid by the state and shut down.

-Gail