Re: Dismal options for adults aging out of transition programs

[Guest guest]

We are in the same position with our son aging out in May from his Commun.

College program. After calling people in our area regarding Voc. Rehab. support,

we were advised that there are no services to new enrollees at this time due to

funding cuts. We already have no transportation where we live, so no job coach

or assistance here is devastating. We have initiated plans to move out of IL, so

we can live a live that we are destined for-

We will pay for his coaching and trans- just not in a state that shows such poor

govt. and humanity.

Marget

From: ATTAChLynn@... <ATTAChLynn@...>

Subject: 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]

We are in the same position with our son aging out in May from his Commun.

College program. After calling people in our area regarding Voc. Rehab. support,

we were advised that there are no services to new enrollees at this time due to

funding cuts. We already have no transportation where we live, so no job coach

or assistance here is devastating. We have initiated plans to move out of IL, so

we can live a live that we are destined for-

We will pay for his coaching and trans- just not in a state that shows such poor

govt. and humanity.

Marget

From: ATTAChLynn@... <ATTAChLynn@...>

Subject: 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]

Dear List:

I don't know about the rest of you, but I am so tired of having to do

everything for my child, now an adult, with autism. I don't mean that I don't

have responsibilities to take care of her, which I have done and will

continue to do. I had to educate our school district on autism when my child

entered their dismal program. I had to research to learn about the best way

to teach her, ABA. I had to get that program going in our home and then

force the school district to assist. I had to fight them when they wanted to

dump our program, for some approach that they could not even tell us what

it was. I have had to bring awareness of what autism is to our community.

....I think you can get the picture, and I know you have all done that for

each of your children with disabilities. Now that my daughter will be

aging out of school services in the next 3 years, but is still very affected by

autism, I have no idea where to go from here. Especially living in this

dismal state of Illinois plus being in a rural community with little to

offer. (we can't move because we farm...can't move farm ground) What will make

this harder is the fact the characteristics of autism that my daughter

exhibits will make it even harder to find a place for her to live.

Plus this is not the only thing on our plates..taking care of aging

parents, full time jobs, etc.

I believe that our children deserve better than this. I wish I was rich

and could develop a place where all our adult children could live their

lives and be happy and taken care of.

Not sure if I am making sense here...I am just tired and frustrated...

Jill

Kane, IL

In a message dated 1/7/2010 5:13:49 P.M. Central Standard Time,

clchristensen100@... writes:

I was thinking about that as I wrote my reply. I am often horrified by

parents who are not involved or participating in their child's education and

transition. But, a school system cannot adequately transition students to the

adult world when they don't know what that requires.

Christensen

Re: Dismal options for adults aging out of

transition programs

,

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

and their knowledge of the agencies or services...but.I hear what you're

saying about the disconnect between some school staffs and their knowledge

of the agencies or services...but.<WBR>..going out on a big limb here...I

also think it's not really their job to hold the parents' hands throughout

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

out information, go to the god awful meetings, read, educate ourselves, etc.

They are required to 'link' us to the ou

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

in, but if we fault the schools I think we also need to fault ourselves for

not knowing what is going on out there in the so-called adult service

world.

Just my two cents.

L.

Re: Dismal options for adults aging out of

transition programs

_IPADDUnite@groIPADDUn_ (mailto: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.

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

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

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

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

[Guest guest]

Dear List:

I don't know about the rest of you, but I am so tired of having to do

everything for my child, now an adult, with autism. I don't mean that I don't

have responsibilities to take care of her, which I have done and will

continue to do. I had to educate our school district on autism when my child

entered their dismal program. I had to research to learn about the best way

to teach her, ABA. I had to get that program going in our home and then

force the school district to assist. I had to fight them when they wanted to

dump our program, for some approach that they could not even tell us what

it was. I have had to bring awareness of what autism is to our community.

....I think you can get the picture, and I know you have all done that for

each of your children with disabilities. Now that my daughter will be

aging out of school services in the next 3 years, but is still very affected by

autism, I have no idea where to go from here. Especially living in this

dismal state of Illinois plus being in a rural community with little to

offer. (we can't move because we farm...can't move farm ground) What will make

this harder is the fact the characteristics of autism that my daughter

exhibits will make it even harder to find a place for her to live.

Plus this is not the only thing on our plates..taking care of aging

parents, full time jobs, etc.

I believe that our children deserve better than this. I wish I was rich

and could develop a place where all our adult children could live their

lives and be happy and taken care of.

Not sure if I am making sense here...I am just tired and frustrated...

Jill

Kane, IL

In a message dated 1/7/2010 5:13:49 P.M. Central Standard Time,

clchristensen100@... writes:

I was thinking about that as I wrote my reply. I am often horrified by

parents who are not involved or participating in their child's education and

transition. But, a school system cannot adequately transition students to the

adult world when they don't know what that requires.

Christensen

Re: Dismal options for adults aging out of

transition programs

,

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

and their knowledge of the agencies or services...but.I hear what you're

saying about the disconnect between some school staffs and their knowledge

of the agencies or services...but.<WBR>..going out on a big limb here...I

also think it's not really their job to hold the parents' hands throughout

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

out information, go to the god awful meetings, read, educate ourselves, etc.

They are required to 'link' us to the ou

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

in, but if we fault the schools I think we also need to fault ourselves for

not knowing what is going on out there in the so-called adult service

world.

Just my two cents.

L.

Re: Dismal options for adults aging out of

transition programs

_IPADDUnite@groIPADDUn_ (mailto: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.

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

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

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

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

[Guest guest]

With a few remarks explaining what transition is and what these programs are,

this could be turned into a fine Letter to the Editor...and letters to your

State Rep, State Senator, and Governor.

Share the despair!

-Gail

From: ATTAChLynn@... <ATTAChLynn@...>

Subject: 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]

With a few remarks explaining what transition is and what these programs are,

this could be turned into a fine Letter to the Editor...and letters to your

State Rep, State Senator, and Governor.

Share the despair!

-Gail

From: ATTAChLynn@... <ATTAChLynn@...>

Subject: 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]

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]

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 always felt that if we want to get a better idea of how many families are

out there, the PUNS should be done at the school level.  Let the Social Workers

fill out the PUNs with the families. 

 

Cindi, I have the same experience.  Many families are bullied into not filling

out the PUNs.  Many simply have no idea it even exist.

 

Beyond Sad!

Bedard

Ricky, andra and Tiffy's Mom“

 

Every person, regardless of whatever different abilities they may have, can

contribute, can be a source of joy, can beam with pride and love.†--Eunice

Kennedy Shriver

From: Cindi Swanson <cbswanson@...>

Subject: 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]

I have always felt that if we want to get a better idea of how many families are

out there, the PUNS should be done at the school level.  Let the Social Workers

fill out the PUNs with the families. 

 

Cindi, I have the same experience.  Many families are bullied into not filling

out the PUNs.  Many simply have no idea it even exist.

 

Beyond Sad!

Bedard

Ricky, andra and Tiffy's Mom“

 

Every person, regardless of whatever different abilities they may have, can

contribute, can be a source of joy, can beam with pride and love.†--Eunice

Kennedy Shriver

From: Cindi Swanson <cbswanson@...>

Subject: 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]

How can students with disabilities be properly transitioned from school to adult

life when the vast majority of school staff know absolutely nothing about the

adult system? There is a complete disconnect between public education and

services for adults with disabilities.

Christensen

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]

How can students with disabilities be properly transitioned from school to adult

life when the vast majority of school staff know absolutely nothing about the

adult system? There is a complete disconnect between public education and

services for adults with disabilities.

Christensen

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]

,

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

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

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

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

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

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

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

up to each of us.

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

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

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

Just my two cents.

L.

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]

,

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

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

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

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

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

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

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

up to each of us.

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

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

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

Just my two cents.

L.

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]

I have to say that a lot of people employed in school settings have no idea

of the reality of the world of employment. None.

I know that's a terrible thing to say, but it's what I've seen. I've had

problems with everything from persuading people that kids interested in

construction trades really need fractions more than decimals or algebra to

discussing the fact that some employers do not demand that all employees

arrive at work early in the morning. There are lots of different kinds of

jobs and workplaces. There seems, however, to be only one kind of school.

Am I exaggerating? Probably. Even if I am exaggerating, there still seems

to be a one-size-fits-all mentality in the school system. I'm not sure we

can fix it. Maybe we need something else.

Jean

cold, cranky, and a little bit iconoclastic today

On Thu, Jan 7, 2010 at 4:52 PM, Jerue Family <jeruefamily@...>wrote:

>

>

> ,

>

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

> and their knowledge of the agencies or services...but...going out on a big

> limb here...I also think it's not really their job to hold the parents'

> hands throughout this process. I think it's very much up to each and every

> one of us to seek out information, go to the god awful meetings, read,

> educate ourselves, etc. They are required to 'link' us to the outside

> agencies, not necessarily be telling us or knowing what the agencies can or

> cannot do for us. I think that's up to each of us.

>

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

> in, but if we fault the schools I think we also need to fault ourselves for

> not knowing what is going on out there in the so-called adult service world.

>

>

> Just my two cents.

> L.

> Re: Dismal options for adults aging out of transition

> programs

> IPADDUnite <IPADDUnite%40>

> 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 to say that a lot of people employed in school settings have no idea

of the reality of the world of employment. None.

I know that's a terrible thing to say, but it's what I've seen. I've had

problems with everything from persuading people that kids interested in

construction trades really need fractions more than decimals or algebra to

discussing the fact that some employers do not demand that all employees

arrive at work early in the morning. There are lots of different kinds of

jobs and workplaces. There seems, however, to be only one kind of school.

Am I exaggerating? Probably. Even if I am exaggerating, there still seems

to be a one-size-fits-all mentality in the school system. I'm not sure we

can fix it. Maybe we need something else.

Jean

cold, cranky, and a little bit iconoclastic today

On Thu, Jan 7, 2010 at 4:52 PM, Jerue Family <jeruefamily@...>wrote:

>

>

> ,

>

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

> and their knowledge of the agencies or services...but...going out on a big

> limb here...I also think it's not really their job to hold the parents'

> hands throughout this process. I think it's very much up to each and every

> one of us to seek out information, go to the god awful meetings, read,

> educate ourselves, etc. They are required to 'link' us to the outside

> agencies, not necessarily be telling us or knowing what the agencies can or

> cannot do for us. I think that's up to each of us.

>

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

> in, but if we fault the schools I think we also need to fault ourselves for

> not knowing what is going on out there in the so-called adult service world.

>

>

> Just my two cents.

> L.

> Re: Dismal options for adults aging out of transition

> programs

> IPADDUnite <IPADDUnite%40>

> 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 was thinking about that as I wrote my reply. I am often horrified by parents

who are not involved or participating in their child's education and transition.

But, a school system cannot adequately transition students to the adult world

when they don't know what that requires.

Christensen

Re: Dismal options for adults aging out of transition

programs

,

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

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

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

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

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

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

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

up to each of us.

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

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

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

Just my two cents.

L.

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]

I was thinking about that as I wrote my reply. I am often horrified by parents

who are not involved or participating in their child's education and transition.

But, a school system cannot adequately transition students to the adult world

when they don't know what that requires.

Christensen

Re: Dismal options for adults aging out of transition

programs

,

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

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

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

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

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

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

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

up to each of us.

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

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

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

Just my two cents.

L.

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]

Yes, yes, we agree about that part. Would suspect there's also a fair amount of

'head in the sand' mentality on the part of school staff because it's such an

unpleasant thought for THEM too. Kind of different from the preschool teacher

mentality where everything is still possible. By the time we're in high school

or transition, everyone, teachers included, knows what lies ahead and it's so

unpleasant sometimes it must hurt them. The ones who cared the most about

also tended to be the ones who were most distraught over her limited post-school

options. Combine that with us parents wanting to stay in denial and you've got

quite a powerful denial trip going!!

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'm not sure she's entirely wrong, by the way...but it's not a message those of

us accustomed to working with an IEP team are used to hearing.

It's like you're in your last IEP meeting, looking at all the goals & all the

boxes where you're accustomed to seeing 'staff' named as person being

responsible for delivering the service or instruction...except now it's OUR NAME

in every box.

Sorry to be such a downer tonight...guess it's the weather.

L.

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]

Yes, yes, we agree about that part. Would suspect there's also a fair amount of

'head in the sand' mentality on the part of school staff because it's such an

unpleasant thought for THEM too. Kind of different from the preschool teacher

mentality where everything is still possible. By the time we're in high school

or transition, everyone, teachers included, knows what lies ahead and it's so

unpleasant sometimes it must hurt them. The ones who cared the most about

also tended to be the ones who were most distraught over her limited post-school

options. Combine that with us parents wanting to stay in denial and you've got

quite a powerful denial trip going!!

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'm not sure she's entirely wrong, by the way...but it's not a message those of

us accustomed to working with an IEP team are used to hearing.

It's like you're in your last IEP meeting, looking at all the goals & all the

boxes where you're accustomed to seeing 'staff' named as person being

responsible for delivering the service or instruction...except now it's OUR NAME

in every box.

Sorry to be such a downer tonight...guess it's the weather.

L.

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]

Again, I agree with Gail...better yet...make an appointment to meet with your

State Rep and your State Senator, Lynn...tell your story and leave them

something like what you have written below, as a hard copy testimonial...then,

send the letter to the Governor, to the editor of your local paper and to the

Tribune.

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]

Again, I agree with Gail...better yet...make an appointment to meet with your

State Rep and your State Senator, Lynn...tell your story and leave them

something like what you have written below, as a hard copy testimonial...then,

send the letter to the Governor, to the editor of your local paper and to the

Tribune.

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]

Cant keep my mouth shut on this one...or still my dancing fingers over th

ekeyboard. There is enough poo poo that the blame can land all over.

Parents develop 'learned helplessness'. From the start we are told 'don't

worry'

take one day at a time'

the best is TRUST US.

Some of us had built in cynical thinking and din't fall for it. Some of us

took a different road than the school was pushing and took care of it

ourselves. I will say I can point to parents who didn't go to every single

meeting etc. and now are in a quandry. I also know families in other states

that did not go to every meeting on everything dealing with dis. and they

have great home based services because they were linked solidly during

transition.

I also know the schools like our lawmakers fall back on the fact that they

just don't't know what we all want. Inclusion, community based workshop,

icfdd group home . that is an excuse for them all. So there is enough

blame but our state culture has gotten us in this paradigm ..not sure how

to get out.

[Guest guest]

Cant keep my mouth shut on this one...or still my dancing fingers over th

ekeyboard. There is enough poo poo that the blame can land all over.

Parents develop 'learned helplessness'. From the start we are told 'don't

worry'

take one day at a time'

the best is TRUST US.

Some of us had built in cynical thinking and din't fall for it. Some of us

took a different road than the school was pushing and took care of it

ourselves. I will say I can point to parents who didn't go to every single

meeting etc. and now are in a quandry. I also know families in other states

that did not go to every meeting on everything dealing with dis. and they

have great home based services because they were linked solidly during

transition.

I also know the schools like our lawmakers fall back on the fact that they

just don't't know what we all want. Inclusion, community based workshop,

icfdd group home . that is an excuse for them all. So there is enough

blame but our state culture has gotten us in this paradigm ..not sure how

to get out.

[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