Re: What We Can Do Now (Was: Budget Cuts to State Run Institutions info)

[Guest guest]

I disagree with Ms. Burke.  I like the IL Blueprint.  I've testified in an

area townhall on the topic, and I met with my state rep to advocate in favor of

it.

Yet in one tiny sense, I agree with one sliver of her point.  If the state cuts

to institutions (gee, I thought IL was closing them), her son will be where the

kids of most folks on this list are--dependent on their parents for living

arrangements and all assistance.  With little or no community involvement.

I suspect that in many parts of IL, she's right about the community stepping

up.  And if lot of us agree that our communities could do additional things to

benefit adults with DD, then maybe a good short-term project is to find ideas on

how to improve our communities.  (If we started with cheap ideas, that would

probably be a good idea.)

So often we promote community settings, seeming to believe that if our kids were

living " in the community " then the community would magically step up to the

plate and do more.  I'm beginning to think that finding better participation

and acceptance in IL communities would pave the way for a smoother transition

when our kids get that opportunity to move out.

Working on getting our communities to notice, accept, and engage with adults

with DD is something we can work on now, and see progress.  Anyone tried any

first steps in that direction that they felt have been successful?

-Gail

________________________________

From: Jerue Family <jeruefamily@...>

IPADDUnite

Sent: Thursday, August 18, 2011 6:06 PM

Subject: Re: Budget Cuts to State Run Institutions info

 

,

Here’s a blurb about her from a 2008 article I found when I googled her.

She’s quite famous! And she did NOT like the Illinois Blueprint when it came

out in 2008, either.

“Rita Burke is one advocate who has fiercely criticized the blueprint. As

president of the Illinois League of Advocates for the Developmentally Disabled

and mother of a 38-year-old man with a developmental disability, Burke said she

speaks as a parent in fear for her son’s life. She does not believe that

community settings are capable of caring for her son. “If [state-operated

developmental centers] close, then people like , and there are many like

, will end up either in jail or dead.â€

In another article I saw her accuse parents like you and me (those of us without

residential funding & who think our kids could live in a community setting) of

NOT BEING CONCERNED WITH THE FATES OF THESE LOW-FUNCTIONING INDIVIDUALS, that

we’re only out for own families & our relatively ‘easy to support’ kids.

It would be funny if it wasn’t so maddening. How does Rita Burke’s

organization & followers advocate for OUR FAMILIES?

Hmmm, I’d like to ask her that question. Wonder if she’d like to be a guest

on IPADDUnite?

Laurie

From: Bedard

Sent: Thursday, August 18, 2011 5:47 PM

IPADDUnite

Subject: Re: Budget Cuts to State Run Institutions info

Does anyone have any background information on Rita Burke? Does she have a

loved one in a State Run Institution? Reading this was kind of " frightening " to

say the least.

Bedard, PLA

Ricky, andra and 's Mom

Mothers on a Mission, Inc.

6515 Stanley Avenue #4

Berwyn, IL 60402

708-217-3196

www.mothersonamission.net

www.noewait.net

" Science may have found a cure for most evils; but it has found no remedy for

the worst of them all -- the apathy of human beings. " - Helen Keller

Be positive; it will annoy enough people to make it worth the effort!

[Guest guest]

Yes, parents need to work for the acceptance and integration of our loved ones

in our communities.  And work to convince legislators that with budget deficits

and more threatened cuts from Republicans., taxpayer dollars are better spent

for community supports.

I'd suggest that Illinois' system is the enemy, not one person or her

organization.  I have to empathize with Ms. Burke and others who perceive that

the State Operated Developmental Centers (SODCs) are safe and necessary

placements for their loved ones.   Because currently there isn't an adequate

infrastructure' of community based programs for transitions out of those

institutions.   (I did advocate for the closing of Howe; it clearly wasn't a

safe place.) 

I have an old article from the TASH journal on parental attitudes before and

after deinstitutionalization of a loved one.   Not surprisingly, before that

loved one moved into the community, there were many fears.  Afterward, many

parents had very positive  attitudes and commented on a number of improvements

in the behaviors of their loved ones. 

For Ellen -- and any others meeting with Secy. Sadler-- 

I'd hope that we might agree on a  message to our legislators  and Sec'y

Sadler:

  " deinstitutionalization without planning and provision for community programs

is only dumping. "    I, too, support the Blueprint and know that the community

is the best place for my son and others.  That said, I believe we can also

honor

the strong, loving feelings of parents who are clinging to institutions, while

disagreeing with them.

Bonnie Dohogne

________________________________

From: G Mrozak <mrsovaltine@...>

" IPADDUnite " <IPADDUnite >

Sent: Fri, August 19, 2011 10:42:59 AM

Subject: Re: What We Can Do Now (Was: Budget Cuts to State Run

Institutions info)

 

I disagree with Ms. Burke.  I like the IL Blueprint.  I've testified in an

area

townhall on the topic, and I met with my state rep to advocate in favor of it.

Yet in one tiny sense, I agree with one sliver of her point.  If the state cuts

to institutions (gee, I thought IL was closing them), her son will be where the

kids of most folks on this list are--dependent on their parents for living

arrangements and all assistance.  With little or no community involvement.

I suspect that in many parts of IL, she's right about the community stepping

up.  And if lot of us agree that our communities could do additional things to

benefit adults with DD, then maybe a good short-term project is to find ideas on

how to improve our communities.  (If we started with cheap ideas, that would

probably be a good idea.)

So often we promote community settings, seeming to believe that if our kids were

living " in the community " then the community would magically step up to the

plate and do more.  I'm beginning to think that finding better participation

and

acceptance in IL communities would pave the way for a smoother transition when

our kids get that opportunity to move out.

Working on getting our communities to notice, accept, and engage with adults

with DD is something we can work on now, and see progress.  Anyone tried any

first steps in that direction that they felt have been successful?

-Gail

________________________________

From: Jerue Family <jeruefamily@...>

IPADDUnite

Sent: Thursday, August 18, 2011 6:06 PM

Subject: Re: Budget Cuts to State Run Institutions info

 

,

Here’s a blurb about her from a 2008 article I found when I googled her.

She’s

quite famous! And she did NOT like the Illinois Blueprint when it came out in

2008, either.

“Rita Burke is one advocate who has fiercely criticized the blueprint. As

president of the Illinois League of Advocates for the Developmentally Disabled

and mother of a 38-year-old man with a developmental disability, Burke said she

speaks as a parent in fear for her son’s life. She does not believe that

community settings are capable of caring for her son. “If [state-operated

developmental centers] close, then people like , and there are many like

, will end up either in jail or dead.â€

In another article I saw her accuse parents like you and me (those of us without

residential funding & who think our kids could live in a community setting) of

NOT BEING CONCERNED WITH THE FATES OF THESE LOW-FUNCTIONING INDIVIDUALS, that

we’re only out for own families & our relatively ‘easy to support’ kids.

It would be funny if it wasn’t so maddening. How does Rita Burke’s

organization

& followers advocate for OUR FAMILIES?

Hmmm, I’d like to ask her that question. Wonder if she’d like to be a guest

on

IPADDUnite?

Laurie

From: Bedard

Sent: Thursday, August 18, 2011 5:47 PM

IPADDUnite

Subject: Re: Budget Cuts to State Run Institutions info

Does anyone have any background information on Rita Burke? Does she have a

loved one in a State Run Institution? Reading this was kind of " frightening " to

say the least.

Bedard, PLA

Ricky, andra and 's Mom

Mothers on a Mission, Inc.

6515 Stanley Avenue #4

Berwyn, IL 60402

708-217-3196

www.mothersonamission.net

www.noewait.net

" Science may have found a cure for most evils; but it has found no remedy for

the worst of them all -- the apathy of human beings. " - Helen Keller

Be positive; it will annoy enough people to make it worth the effort!

[Guest guest]

Bonnie and others,

I agree with your comments that we need to have more alternatives in a community

that will enable families of people with significant disabilities to feel safe

about putting their loved one in the community. Many of these individuals have

tried and the system failed their family miserably. That said, I believe like 13

other states in the US, we can move toward letting everyone with a developmental

disability live fulfilled lives in the community with the supports they need. We

need more political will to do so.

I'm working with others on this issue. Perhaps we can work together to craft a

similar message.

Barb Pritchard

>

> Yes, parents need to work for the acceptance and integration of our loved ones

> in our communities.  And work to convince legislators that with budget

deficits

> and more threatened cuts from Republicans., taxpayer dollars are better spent

> for community supports.

>

> I'd suggest that Illinois' system is the enemy, not one person or her

> organization.  I have to empathize with Ms. Burke and others who perceive

that

> the State Operated Developmental Centers (SODCs) are safe and necessary

> placements for their loved ones.   Because currently there isn't an adequate

> infrastructure' of community based programs for transitions out of those

> institutions.   (I did advocate for the closing of Howe; it clearly wasn't a

> safe place.) 

>

>

> I have an old article from the TASH journal on parental attitudes before and

> after deinstitutionalization of a loved one.   Not surprisingly, before that

> loved one moved into the community, there were many fears.  Afterward, many

> parents had very positive  attitudes and commented on a number of

improvements

> in the behaviors of their loved ones. 

>

>

> For Ellen -- and any others meeting with Secy. Sadler-- 

> I'd hope that we might agree on a  message to our legislators  and Sec'y

Sadler:

>   " deinstitutionalization without planning and provision for community

programs

> is only dumping. "    I, too, support the Blueprint and know that the

community

> is the best place for my son and others.  That said, I believe we can also

honor

> the strong, loving feelings of parents who are clinging to institutions, while

> disagreeing with them.

>

> Bonnie Dohogne

>

>

>

>

>

>

>

>

> ________________________________

> From: G Mrozak <mrsovaltine@...>

> " IPADDUnite " <IPADDUnite >

> Sent: Fri, August 19, 2011 10:42:59 AM

> Subject: Re: What We Can Do Now (Was: Budget Cuts to State Run

> Institutions info)

>

>  

> I disagree with Ms. Burke.  I like the IL Blueprint.  I've testified in an

area

> townhall on the topic, and I met with my state rep to advocate in favor of it.

>

> Yet in one tiny sense, I agree with one sliver of her point.  If the state

cuts

> to institutions (gee, I thought IL was closing them), her son will be where

the

> kids of most folks on this list are--dependent on their parents for living

> arrangements and all assistance.  With little or no community involvement.

>

> I suspect that in many parts of IL, she's right about the community stepping

> up.  And if lot of us agree that our communities could do additional things

to

> benefit adults with DD, then maybe a good short-term project is to find ideas

on

> how to improve our communities.  (If we started with cheap ideas, that would

> probably be a good idea.)

>

> So often we promote community settings, seeming to believe that if our kids

were

> living " in the community " then the community would magically step up to the

> plate and do more.  I'm beginning to think that finding better participation

and

> acceptance in IL communities would pave the way for a smoother transition when

> our kids get that opportunity to move out.

>

> Working on getting our communities to notice, accept, and engage with adults

> with DD is something we can work on now, and see progress.  Anyone tried any

> first steps in that direction that they felt have been successful?

>

> -Gail

>

> ________________________________

> From: Jerue Family <jeruefamily@...>

> IPADDUnite

> Sent: Thursday, August 18, 2011 6:06 PM

> Subject: Re: Budget Cuts to State Run Institutions info

>

>  

> ,

> Here’s a blurb about her from a 2008 article I found when I googled her.

She’s

> quite famous! And she did NOT like the Illinois Blueprint when it came out in

> 2008, either.

>

> “Rita Burke is one advocate who has fiercely criticized the blueprint. As

> president of the Illinois League of Advocates for the Developmentally Disabled

> and mother of a 38-year-old man with a developmental disability, Burke said

she

> speaks as a parent in fear for her son’s life. She does not believe that

> community settings are capable of caring for her son. “If [state-operated

> developmental centers] close, then people like , and there are many like

> , will end up either in jail or dead.â€

>

>

> In another article I saw her accuse parents like you and me (those of us

without

> residential funding & who think our kids could live in a community setting) of

> NOT BEING CONCERNED WITH THE FATES OF THESE LOW-FUNCTIONING INDIVIDUALS, that

> we’re only out for own families & our relatively ‘easy to support’ kids.

>

>

> It would be funny if it wasn’t so maddening. How does Rita Burke’s

organization

> & followers advocate for OUR FAMILIES?

>

>

> Hmmm, I’d like to ask her that question. Wonder if she’d like to be a

guest on

> IPADDUnite?

>

>

> Laurie

>

> From: Bedard

> Sent: Thursday, August 18, 2011 5:47 PM

> IPADDUnite

> Subject: Re: Budget Cuts to State Run Institutions info

>

> Does anyone have any background information on Rita Burke? Does she have a

> loved one in a State Run Institution? Reading this was kind of " frightening "

to

> say the least.

>

> Bedard, PLA

> Ricky, andra and 's Mom

> Mothers on a Mission, Inc.

> 6515 Stanley Avenue #4

> Berwyn, IL 60402

> 708-217-3196

> www.mothersonamission.net

> www.noewait.net

>

> " Science may have found a cure for most evils; but it has found no remedy for

> the worst of them all -- the apathy of human beings. " - Helen Keller

>

> Be positive; it will annoy enough people to make it worth the effort!

>