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Re: ACTION ALERT: Tell CDC NO on abuse-enabling wandering code!

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There seems to be many assumptions in the objection. The bottom line is when

will those that need this kind of protection be protected. I know protectionism

can over-do itself and even be abused.

ACTION ALERT: Tell CDC " NO " on abuse-enabling

" wandering " code!

More work for all of us to do, but we have to do it for our loved ones.

Please Share!!!

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

" Don't judge me because as far as I know I haven't let you borrow my shoes to

walk in. "

----- Forwarded Message ----

From: Carol Boyke

FYI:

________________________________

ACTION ALERT

Tell the CDC " No " on Abuse-Enabling " Wandering "

Code!

Greetings!

Last week, the ICD-9-CM Coordination and

Maintenance Committee met to discuss the future of

medical coding in the United States. The ICD-9-CM

stands for the International Classification of

Diseases, Ninth Revision, Clinical Modification,

and is the US government's official system of

assigning codes to medical diagnoses and

procedures. The day before the meeting, the

Centers for Disease Control and Prevention (CDC)

posted for the first time information on the

codes under consideration - including a new

medical diagnosis for " wandering " related

behavior in children and adults on the autism

spectrum and with other developmental

disabilities. If approved, this new coding

promises to label hundreds of thousands of

children with " wandering " diagnoses that would

make it easier for school districts and

residential facilities to justify restraint and

seclusion in the name of treatment. Furthermore,

this diagnosis carries no clear definition and the

CDC's proposal uses poor quality research to claim

that it should apply to the majority of autistic

children and those with other developmental and

intellectual disabilities.

The CDC's last minute proposal was made public

only the day before the public hearing on these

coding was scheduled to occur - well after the

registration for people to give public comment had

closed! Our only chance to have our voices be

heard is to flood the written comment session

before that deadline passes on April 1st. To do

that, we need your help! Here's what you can do:

1. First, send an e-mail to to CDC's co-chair

of the ICD-9-CM Coordination and Maintenance

Committee telling them to REJECT a medical

label for " wandering " -related behavior. Her

name is Donna Pickett and her e-mail

is dfp4@.... Remember, they have to hear

from us by April 1st! We've provided some

talking points to help you make your case:

* Labeling hundreds of thousands of children

with a " wandering " diagnosis will increase

restraint and seclusion in schools: One of the

consistent messages from our community in last

year's advocacy for federal legislation to stop

restraint and seclusion in schools was that when

schools plan to restrain students, they do

restrain students - frequently with tragic

results. By labeling hundreds of thousands of

school children with disabilities with a

diagnosis of " wandering " , CDC will encourage

districts to plan for the use of restraint for

these students in Individualized Education Plans

(IEPs) and school safety planning. Furthermore,

by claiming that " wandering " is an unavoidable

medical diagnosis instead of a behavioral

response to specific circumstances, children

with little to no communication needs may lose

one of their last ways of making family members

and educators aware of abusive or sensorily

overwhelming environments: trying to leave a

dangerous situation. Far from making children

with disabilities safer, this proposal will

enable abuse " in the name of treatment " and make

it harder for non-speaking students to

communicate problems to their families.

* The " wandering " diagnosis lacks meaningful

research support: There exists no research

to classify " wandering " as a medical rather than

a behavioral issue. This proposal is being

pushed forward without meaningful research

support. In fact, one of the few " studies " that

the CDC does site is a 2007 online poll on the

website of an advocacy group in support of this

proposal claiming that this code could apply to

as many as 92% of autistic children. An online

poll on a web site mainly visited by supporters

of the proposal is not a scientifically valid

survey instrument.

* The use of the " wandering " label on adults

will enable abuse and restrict the civil rights

of Americans with Disabilities: As

children labeled with this diagnosis grow up, a

" wandering " label could be used as a factor to

justify guardianship - the stripping of legal

capacity - in areas where it otherwise would not

be deemed acceptable. Advocates of a " wandering "

label make the case that its usage would enable

insurance coverage for tracking devices, whose

use for adults would restrict freedom of

movement and make it harder for individuals to

flee abusive situations. Furthermore, this

diagnosis will increase the usage of more

restrictive service-provision placements, like

institutions and group homes, as a way of

countering the " flight risk " that labeled

individuals will be presumed to pose.

2. Sign ASAN's petition to tell CDC to reject

and withdraw this ill-considered proposal to

create a " wandering " medical diagnosis. A link

can be found

at:http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffI\

W35dnsIiZLIg9zVrXXv3LC2PFzi58EKFgdwk9VJaI8VrXv1GquVvIPcn4e2xhmuv-DdttUYAz1ym-Xe5\

P-PuwUSnGSKojaHQ_n3QlhgJd4MWjbVzdWEwdvMDKGmEFsRnFeUIJjWCPtuURcLmtscd3WYnsNXNeVlf\

ddwUAWo4md5WI6KBTu_wcDMH

3. Disseminate this action alert to your

friends and family members as well as members

of local, state and national advocacy groups

you may belong to who can pass it along to

their members. Encourage them to e-mail or call

ASAN to find out how they can lend their

support to our efforts to oppose abuse. Help us

spread the word to stand up against abuse!

Remember, we only have till April 1st! Thank you

for taking the time to weigh in and we appreciate

your support as we continue the struggle against

abuse and for our civil and human rights.

Regards,

Ari Ne'eman

President

The Autistic Self Advocacy Network

http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffIW35\

IqxVwJhYKi79Rwle-MtNkfP8rgNAjPv8f58YuAP9zrHlL6A4sqaL7pzi3che7rEJ7ncOmamOfDXPeLAP\

AwFX4ZIFBcUhsnKbUaQKSgJreVTgWPhdfYOxP

info@...

(202) 596-1056

The Autistic Self-Advocacy Network (ASAN) is a

non-profit organization run by and for Autistic

people, fighting for disability rights in the

world of autism. Working in fields such as public

policy, media representation, research and

systems change, ASAN hopes to empower Autistic

people across the world to take control of their

own lives and the future of our common community.

Link to comment
Share on other sites

Guest guest

I think in there lies the key " in the name of treatment " . One of my children

was placed in isolation for over an hour all in the name of treatment. The

damage is long lasting, possibly lifelong! If I had only known at the time....

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

" Don't judge me because as far as I know I haven't let you borrow my shoes to

walk in. "

________________________________

From: Young <nathan@...>

IPADDUnite

Sent: Wed, March 16, 2011 12:19:40 PM

Subject: Re: ACTION ALERT: Tell CDC " NO " on abuse-enabling

" wandering " code!

There seems to be many assumptions in the objection. The bottom line is when

will those that need this kind of protection be protected. I know protectionism

can over-do itself and even be abused.

ACTION ALERT: Tell CDC " NO " on abuse-enabling " wandering "

code!

More work for all of us to do, but we have to do it for our loved ones.

Please Share!!!

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

" Don't judge me because as far as I know I haven't let you borrow my shoes to

walk in. "

----- Forwarded Message ----

From: Carol Boyke

FYI:

________________________________

ACTION ALERT

Tell the CDC " No " on Abuse-Enabling " Wandering "

Code!

Greetings!

Last week, the ICD-9-CM Coordination and

Maintenance Committee met to discuss the future of

medical coding in the United States. The ICD-9-CM

stands for the International Classification of

Diseases, Ninth Revision, Clinical Modification,

and is the US government's official system of

assigning codes to medical diagnoses and

procedures. The day before the meeting, the

Centers for Disease Control and Prevention (CDC)

posted for the first time information on the

codes under consideration - including a new

medical diagnosis for " wandering " related

behavior in children and adults on the autism

spectrum and with other developmental

disabilities. If approved, this new coding

promises to label hundreds of thousands of

children with " wandering " diagnoses that would

make it easier for school districts and

residential facilities to justify restraint and

seclusion in the name of treatment. Furthermore,

this diagnosis carries no clear definition and the

CDC's proposal uses poor quality research to claim

that it should apply to the majority of autistic

children and those with other developmental and

intellectual disabilities.

The CDC's last minute proposal was made public

only the day before the public hearing on these

coding was scheduled to occur - well after the

registration for people to give public comment had

closed! Our only chance to have our voices be

heard is to flood the written comment session

before that deadline passes on April 1st. To do

that, we need your help! Here's what you can do:

1. First, send an e-mail to to CDC's co-chair

of the ICD-9-CM Coordination and Maintenance

Committee telling them to REJECT a medical

label for " wandering " -related behavior. Her

name is Donna Pickett and her e-mail

is dfp4@.... Remember, they have to hear

from us by April 1st! We've provided some

talking points to help you make your case:

* Labeling hundreds of thousands of children

with a " wandering " diagnosis will increase

restraint and seclusion in schools: One of the

consistent messages from our community in last

year's advocacy for federal legislation to stop

restraint and seclusion in schools was that when

schools plan to restrain students, they do

restrain students - frequently with tragic

results. By labeling hundreds of thousands of

school children with disabilities with a

diagnosis of " wandering " , CDC will encourage

districts to plan for the use of restraint for

these students in Individualized Education Plans

(IEPs) and school safety planning. Furthermore,

by claiming that " wandering " is an unavoidable

medical diagnosis instead of a behavioral

response to specific circumstances, children

with little to no communication needs may lose

one of their last ways of making family members

and educators aware of abusive or sensorily

overwhelming environments: trying to leave a

dangerous situation. Far from making children

with disabilities safer, this proposal will

enable abuse " in the name of treatment " and make

it harder for non-speaking students to

communicate problems to their families.

* The " wandering " diagnosis lacks meaningful

research support: There exists no research

to classify " wandering " as a medical rather than

a behavioral issue. This proposal is being

pushed forward without meaningful research

support. In fact, one of the few " studies " that

the CDC does site is a 2007 online poll on the

website of an advocacy group in support of this

proposal claiming that this code could apply to

as many as 92% of autistic children. An online

poll on a web site mainly visited by supporters

of the proposal is not a scientifically valid

survey instrument.

* The use of the " wandering " label on adults

will enable abuse and restrict the civil rights

of Americans with Disabilities: As

children labeled with this diagnosis grow up, a

" wandering " label could be used as a factor to

justify guardianship - the stripping of legal

capacity - in areas where it otherwise would not

be deemed acceptable. Advocates of a " wandering "

label make the case that its usage would enable

insurance coverage for tracking devices, whose

use for adults would restrict freedom of

movement and make it harder for individuals to

flee abusive situations. Furthermore, this

diagnosis will increase the usage of more

restrictive service-provision placements, like

institutions and group homes, as a way of

countering the " flight risk " that labeled

individuals will be presumed to pose.

2. Sign ASAN's petition to tell CDC to reject

and withdraw this ill-considered proposal to

create a " wandering " medical diagnosis. A link

can be found

at:http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffI\

W35dnsIiZLIg9zVrXXv3LC2PFzi58EKFgdwk9VJaI8VrXv1GquVvIPcn4e2xhmuv-DdttUYAz1ym-Xe5\

P-PuwUSnGSKojaHQ_n3QlhgJd4MWjbVzdWEwdvMDKGmEFsRnFeUIJjWCPtuURcLmtscd3WYnsNXNeVlf\

ddwUAWo4md5WI6KBTu_wcDMH

3. Disseminate this action alert to your

friends and family members as well as members

of local, state and national advocacy groups

you may belong to who can pass it along to

their members. Encourage them to e-mail or call

ASAN to find out how they can lend their

support to our efforts to oppose abuse. Help us

spread the word to stand up against abuse!

Remember, we only have till April 1st! Thank you

for taking the time to weigh in and we appreciate

your support as we continue the struggle against

abuse and for our civil and human rights.

Regards,

Ari Ne'eman

President

The Autistic Self Advocacy Network

http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffIW35\

IqxVwJhYKi79Rwle-MtNkfP8rgNAjPv8f58YuAP9zrHlL6A4sqaL7pzi3che7rEJ7ncOmamOfDXPeLAP\

AwFX4ZIFBcUhsnKbUaQKSgJreVTgWPhdfYOxP

info@...

(202) 596-1056

The Autistic Self-Advocacy Network (ASAN) is a

non-profit organization run by and for Autistic

people, fighting for disability rights in the

world of autism. Working in fields such as public

policy, media representation, research and

systems change, ASAN hopes to empower Autistic

people across the world to take control of their

own lives and the future of our common community.

Link to comment
Share on other sites

Guest guest

I've seen it happen to others and I've been threatened one time in the name of

treatment. I needed to say at a county facility as I asked for help during a

heat wave. A young man didnt get hiz seizure meds and had a massive grand-mal on

the cement floor. I was then threatened and drugged shortly after and I was not

adverse other then to there reputation. The following day I saw a severaly

developmentally disabled young man confined, isolated and bound for simply

clapping.

I put it on California wide radio and a letter from my congressman on my

complainant website.

Yet sometimes people need to be protected and I want balance. It's scary to

assume of myself my experience was typical but if others are not protected they

could also die.

Young

ACTION ALERT: Tell CDC " NO " on abuse-enabling

" wandering "

code!

More work for all of us to do, but we have to do it for our loved ones.

Please Share!!!

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

" Don't judge me because as far as I know I haven't let you borrow my shoes to

walk in. "

----- Forwarded Message ----

From: Carol Boyke

FYI:

________________________________

ACTION ALERT

Tell the CDC " No " on Abuse-Enabling " Wandering "

Code!

Greetings!

Last week, the ICD-9-CM Coordination and

Maintenance Committee met to discuss the future of

medical coding in the United States. The ICD-9-CM

stands for the International Classification of

Diseases, Ninth Revision, Clinical Modification,

and is the US government's official system of

assigning codes to medical diagnoses and

procedures. The day before the meeting, the

Centers for Disease Control and Prevention (CDC)

posted for the first time information on the

codes under consideration - including a new

medical diagnosis for " wandering " related

behavior in children and adults on the autism

spectrum and with other developmental

disabilities. If approved, this new coding

promises to label hundreds of thousands of

children with " wandering " diagnoses that would

make it easier for school districts and

residential facilities to justify restraint and

seclusion in the name of treatment. Furthermore,

this diagnosis carries no clear definition and the

CDC's proposal uses poor quality research to claim

that it should apply to the majority of autistic

children and those with other developmental and

intellectual disabilities.

The CDC's last minute proposal was made public

only the day before the public hearing on these

coding was scheduled to occur - well after the

registration for people to give public comment had

closed! Our only chance to have our voices be

heard is to flood the written comment session

before that deadline passes on April 1st. To do

that, we need your help! Here's what you can do:

1. First, send an e-mail to to CDC's co-chair

of the ICD-9-CM Coordination and Maintenance

Committee telling them to REJECT a medical

label for " wandering " -related behavior. Her

name is Donna Pickett and her e-mail

is dfp4@.... Remember, they have to hear

from us by April 1st! We've provided some

talking points to help you make your case:

* Labeling hundreds of thousands of children

with a " wandering " diagnosis will increase

restraint and seclusion in schools: One of the

consistent messages from our community in last

year's advocacy for federal legislation to stop

restraint and seclusion in schools was that when

schools plan to restrain students, they do

restrain students - frequently with tragic

results. By labeling hundreds of thousands of

school children with disabilities with a

diagnosis of " wandering " , CDC will encourage

districts to plan for the use of restraint for

these students in Individualized Education Plans

(IEPs) and school safety planning. Furthermore,

by claiming that " wandering " is an unavoidable

medical diagnosis instead of a behavioral

response to specific circumstances, children

with little to no communication needs may lose

one of their last ways of making family members

and educators aware of abusive or sensorily

overwhelming environments: trying to leave a

dangerous situation. Far from making children

with disabilities safer, this proposal will

enable abuse " in the name of treatment " and make

it harder for non-speaking students to

communicate problems to their families.

* The " wandering " diagnosis lacks meaningful

research support: There exists no research

to classify " wandering " as a medical rather than

a behavioral issue. This proposal is being

pushed forward without meaningful research

support. In fact, one of the few " studies " that

the CDC does site is a 2007 online poll on the

website of an advocacy group in support of this

proposal claiming that this code could apply to

as many as 92% of autistic children. An online

poll on a web site mainly visited by supporters

of the proposal is not a scientifically valid

survey instrument.

* The use of the " wandering " label on adults

will enable abuse and restrict the civil rights

of Americans with Disabilities: As

children labeled with this diagnosis grow up, a

" wandering " label could be used as a factor to

justify guardianship - the stripping of legal

capacity - in areas where it otherwise would not

be deemed acceptable. Advocates of a " wandering "

label make the case that its usage would enable

insurance coverage for tracking devices, whose

use for adults would restrict freedom of

movement and make it harder for individuals to

flee abusive situations. Furthermore, this

diagnosis will increase the usage of more

restrictive service-provision placements, like

institutions and group homes, as a way of

countering the " flight risk " that labeled

individuals will be presumed to pose.

2. Sign ASAN's petition to tell CDC to reject

and withdraw this ill-considered proposal to

create a " wandering " medical diagnosis. A link

can be found

at:http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffI\

W35dnsIiZLIg9zVrXXv3LC2PFzi58EKFgdwk9VJaI8VrXv1GquVvIPcn4e2xhmuv-DdttUYAz1ym-Xe5\

P-PuwUSnGSKojaHQ_n3QlhgJd4MWjbVzdWEwdvMDKGmEFsRnFeUIJjWCPtuURcLmtscd3WYnsNXNeVlf\

ddwUAWo4md5WI6KBTu_wcDMH

3. Disseminate this action alert to your

friends and family members as well as members

of local, state and national advocacy groups

you may belong to who can pass it along to

their members. Encourage them to e-mail or call

ASAN to find out how they can lend their

support to our efforts to oppose abuse. Help us

spread the word to stand up against abuse!

Remember, we only have till April 1st! Thank you

for taking the time to weigh in and we appreciate

your support as we continue the struggle against

abuse and for our civil and human rights.

Regards,

Ari Ne'eman

President

The Autistic Self Advocacy Network

http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffIW35\

IqxVwJhYKi79Rwle-MtNkfP8rgNAjPv8f58YuAP9zrHlL6A4sqaL7pzi3che7rEJ7ncOmamOfDXPeLAP\

AwFX4ZIFBcUhsnKbUaQKSgJreVTgWPhdfYOxP

info@...

(202) 596-1056

The Autistic Self-Advocacy Network (ASAN) is a

non-profit organization run by and for Autistic

people, fighting for disability rights in the

world of autism. Working in fields such as public

policy, media representation, research and

systems change, ASAN hopes to empower Autistic

people across the world to take control of their

own lives and the future of our common community.

Link to comment
Share on other sites

Guest guest

Very well stated. I just don't know where the balance will come in.

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

" Don't judge me because as far as I know I haven't let you borrow my shoes to

walk in. "

________________________________

From: Young <nathan@...>

IPADDUnite

Sent: Wed, March 16, 2011 12:50:56 PM

Subject: Re: ACTION ALERT: Tell CDC " NO " on abuse-enabling

" wandering " code!

I've seen it happen to others and I've been threatened one time in the name of

treatment. I needed to say at a county facility as I asked for help during a

heat wave. A young man didnt get hiz seizure meds and had a massive grand-mal on

the cement floor. I was then threatened and drugged shortly after and I was not

adverse other then to there reputation. The following day I saw a severaly

developmentally disabled young man confined, isolated and bound for simply

clapping.

I put it on California wide radio and a letter from my congressman on my

complainant website.

Yet sometimes people need to be protected and I want balance. It's scary to

assume of myself my experience was typical but if others are not protected they

could also die.

Young

ACTION ALERT: Tell CDC " NO " on abuse-enabling " wandering "

code!

More work for all of us to do, but we have to do it for our loved ones.

Please Share!!!

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

" Don't judge me because as far as I know I haven't let you borrow my shoes to

walk in. "

----- Forwarded Message ----

From: Carol Boyke

FYI:

________________________________

ACTION ALERT

Tell the CDC " No " on Abuse-Enabling " Wandering "

Code!

Greetings!

Last week, the ICD-9-CM Coordination and

Maintenance Committee met to discuss the future of

medical coding in the United States. The ICD-9-CM

stands for the International Classification of

Diseases, Ninth Revision, Clinical Modification,

and is the US government's official system of

assigning codes to medical diagnoses and

procedures. The day before the meeting, the

Centers for Disease Control and Prevention (CDC)

posted for the first time information on the

codes under consideration - including a new

medical diagnosis for " wandering " related

behavior in children and adults on the autism

spectrum and with other developmental

disabilities. If approved, this new coding

promises to label hundreds of thousands of

children with " wandering " diagnoses that would

make it easier for school districts and

residential facilities to justify restraint and

seclusion in the name of treatment. Furthermore,

this diagnosis carries no clear definition and the

CDC's proposal uses poor quality research to claim

that it should apply to the majority of autistic

children and those with other developmental and

intellectual disabilities.

The CDC's last minute proposal was made public

only the day before the public hearing on these

coding was scheduled to occur - well after the

registration for people to give public comment had

closed! Our only chance to have our voices be

heard is to flood the written comment session

before that deadline passes on April 1st. To do

that, we need your help! Here's what you can do:

1. First, send an e-mail to to CDC's co-chair

of the ICD-9-CM Coordination and Maintenance

Committee telling them to REJECT a medical

label for " wandering " -related behavior. Her

name is Donna Pickett and her e-mail

is dfp4@.... Remember, they have to hear

from us by April 1st! We've provided some

talking points to help you make your case:

* Labeling hundreds of thousands of children

with a " wandering " diagnosis will increase

restraint and seclusion in schools: One of the

consistent messages from our community in last

year's advocacy for federal legislation to stop

restraint and seclusion in schools was that when

schools plan to restrain students, they do

restrain students - frequently with tragic

results. By labeling hundreds of thousands of

school children with disabilities with a

diagnosis of " wandering " , CDC will encourage

districts to plan for the use of restraint for

these students in Individualized Education Plans

(IEPs) and school safety planning. Furthermore,

by claiming that " wandering " is an unavoidable

medical diagnosis instead of a behavioral

response to specific circumstances, children

with little to no communication needs may lose

one of their last ways of making family members

and educators aware of abusive or sensorily

overwhelming environments: trying to leave a

dangerous situation. Far from making children

with disabilities safer, this proposal will

enable abuse " in the name of treatment " and make

it harder for non-speaking students to

communicate problems to their families.

* The " wandering " diagnosis lacks meaningful

research support: There exists no research

to classify " wandering " as a medical rather than

a behavioral issue. This proposal is being

pushed forward without meaningful research

support. In fact, one of the few " studies " that

the CDC does site is a 2007 online poll on the

website of an advocacy group in support of this

proposal claiming that this code could apply to

as many as 92% of autistic children. An online

poll on a web site mainly visited by supporters

of the proposal is not a scientifically valid

survey instrument.

* The use of the " wandering " label on adults

will enable abuse and restrict the civil rights

of Americans with Disabilities: As

children labeled with this diagnosis grow up, a

" wandering " label could be used as a factor to

justify guardianship - the stripping of legal

capacity - in areas where it otherwise would not

be deemed acceptable. Advocates of a " wandering "

label make the case that its usage would enable

insurance coverage for tracking devices, whose

use for adults would restrict freedom of

movement and make it harder for individuals to

flee abusive situations. Furthermore, this

diagnosis will increase the usage of more

restrictive service-provision placements, like

institutions and group homes, as a way of

countering the " flight risk " that labeled

individuals will be presumed to pose.

2. Sign ASAN's petition to tell CDC to reject

and withdraw this ill-considered proposal to

create a " wandering " medical diagnosis. A link

can be found

at:http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffI\

W35dnsIiZLIg9zVrXXv3LC2PFzi58EKFgdwk9VJaI8VrXv1GquVvIPcn4e2xhmuv-DdttUYAz1ym-Xe5\

P-PuwUSnGSKojaHQ_n3QlhgJd4MWjbVzdWEwdvMDKGmEFsRnFeUIJjWCPtuURcLmtscd3WYnsNXNeVlf\

ddwUAWo4md5WI6KBTu_wcDMH

3. Disseminate this action alert to your

friends and family members as well as members

of local, state and national advocacy groups

you may belong to who can pass it along to

their members. Encourage them to e-mail or call

ASAN to find out how they can lend their

support to our efforts to oppose abuse. Help us

spread the word to stand up against abuse!

Remember, we only have till April 1st! Thank you

for taking the time to weigh in and we appreciate

your support as we continue the struggle against

abuse and for our civil and human rights.

Regards,

Ari Ne'eman

President

The Autistic Self Advocacy Network

http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffIW35\

IqxVwJhYKi79Rwle-MtNkfP8rgNAjPv8f58YuAP9zrHlL6A4sqaL7pzi3che7rEJ7ncOmamOfDXPeLAP\

AwFX4ZIFBcUhsnKbUaQKSgJreVTgWPhdfYOxP

info@...

(202) 596-1056

The Autistic Self-Advocacy Network (ASAN) is a

non-profit organization run by and for Autistic

people, fighting for disability rights in the

world of autism. Working in fields such as public

policy, media representation, research and

systems change, ASAN hopes to empower Autistic

people across the world to take control of their

own lives and the future of our common community.

Link to comment
Share on other sites

Guest guest

here is a simpler version for self-advocates that I translated ...

 

Greetings! 

This is a notice about an action that will affect people with disabilities. 

 

The US government has an official system that assigns codes to medical diagnoses

and procedures. It is called ICD-9-CM. 

 

The Centers for  Disease Control and Prevention (CDC) wants to add a new

medical

diagnosis or code for " wandering " related behavior in children and adults on

the

autism spectrumand with other developmental disabilities.

 

If this is approved, this new coding will label thousands of children with

" wandering " diagnoses that would make it easier for schools and group homes to

restrain children and adults with disabilities and put them in seclusion in the

name of treatment.

At this time the diagnosis of wandering has no clear definition and uses poor

quality research to claim that it should apply to the majority of children with

autism childrenand those with other developmental and intellectual disabilities.

 

Do you want people locked up because they wander away?

Do you want people put in restraints because they wander away?

 

Our only chance to have our voices be heard is to flood the written comment

session before that deadline passes on April 1st. To do that, we need your help!

Here's what you can do:

 

1. First, send an e-mail to Donna Pickett at  dfp4@....   Tell her to

REJECT a medical label for " wandering " behavior.

2. Remember, you only have until April 1st!

3. Sign ASAN's petition to tell CDC to reject and withdraw this ill-considered

proposal to create a " wandering " medical diagnosis. A link can be found

at:http://www.change.org/petitions/tell-the-cdc-no-on-abuse-enabling-wandering-c\

ode 

4. Get this out to your friends and family members.  Get this out to local,

state and national advocacy groups you may belong to who can pass it along to

their members. Ask them to e-mail or call ASAN to find out how they can lend

their support to our efforts to oppose abuse. Help us spread the word to stand

up against abuse!

Here are some talking points to help you make your case:

* Labeling hundreds of thousands of children with a " wandering " diagnosis will

increase restraint and seclusion in schools:

We need to stop restraint and seclusion in schools.  When schools restrain

students, often they get hurt.  By labeling hundreds of thousands of school

children with disabilitieswith a diagnosis of " wandering " , this will encourage

districts to plan for the use of restraint for these students in Individualized

Education Plans(IEPs) and school safety planning.

If we let the government say that " wandering " is a medical diagnosisinstead of a

behavioral response to life, then children with little to no communication needs

may lose one of their last ways of making family members and educators aware of

abusive or overwhelming environments. 

This action does not keep children with disabilitiessafer.  It may allow enable

abuse " in the name of treatment " and make it harder for non-speaking students to

communicate problems to their families. 

* The " wandering " diagnosis does not have good research support: There is no

research to classify " wandering " as a medical rather than a behavioral issue.

This proposal is being pushed forward without good research.

* This code OF “WANDERING†could apply to as many as 92% of children with

autism..

* The use of the " wandering " label on adults may encourage  the sue of

restraints and seclusion and restrict the civil rights of Americans with

Disabilities: As children labeled with this diagnosis grow up, a " wandering "

label could be used as a factor to justify guardianship - the stripping of legal

rights - in areas where it otherwise would not be deemed acceptable. Advocates

of a " wandering " label make the case that its use would allow insurance coverage

for tracking devices, whose use for adults would restrict freedom of movement

and make it harder for individuals to flee abusive situations. Furthermore, this

diagnosis will increase the use of more restrictive service-provision

placements, like institutions and group homes, as a way of countering the

" flight risk " that labeled individuals will be presumed to pose.  

 

Remember, we only have till April 1st! Thank you for taking the time to weigh in

and we appreciate your support as we continue the struggle against abuse and for

our civil and human rights.

  Ficker Terrill, CEO

Institute on Public Policy

cathyfickerterrill@...

630-202-6701begin_of_the_skype_highlighting            630-202-6701Â\

 Â Â Â Â Â end_of_the_skype_highlighting

________________________________

From: Bedard <cathybedard@...>

IPADDUnite

Sent: Wed, March 16, 2011 12:55:04 PM

Subject: Re: ACTION ALERT: Tell CDC " NO " on abuse-enabling

" wandering " code!

 

Very well stated. I just don't know where the balance will come in.

Bedard, PLA

Ricky, andra and 's Mom

Mothers on a Mission, Inc.

6515 Stanley Avenue #4

Berwyn, IL 60402

708-217-3196begin_of_the_skype_highlighting            708-217-3196Â\

 Â Â Â Â Â end_of_the_skype_highlighting

www.mothersonamission.net

www.noewait.net

" Don't judge me because as far as I know I haven't let you borrow my shoes to

walk in. "

________________________________

From: Young <nathan@...>

IPADDUnite

Sent: Wed, March 16, 2011 12:50:56 PM

Subject: Re: ACTION ALERT: Tell CDC " NO " on abuse-enabling

" wandering " code!

I've seen it happen to others and I've been threatened one time in the name of

treatment. I needed to say at a county facility as I asked for help during a

heat wave. A young man didnt get hiz seizure meds and had a massive grand-mal on

the cement floor. I was then threatened and drugged shortly after and I was not

adverse other then to there reputation. The following day I saw a severaly

developmentally disabled young man confined, isolated and bound for simply

clapping.

I put it on California wide radio and a letter from my congressman on my

complainant website.

Yet sometimes people need to be protected and I want balance. It's scary to

assume of myself my experience was typical but if others are not protected they

could also die.

Young

ACTION ALERT: Tell CDC " NO " on abuse-enabling " wandering "

code!

More work for all of us to do, but we have to do it for our loved ones.

Please Share!!!

Bedard, PLA

Ricky, andra and 's Mom

Mothers on a Mission, Inc.

6515 Stanley Avenue #4

Berwyn, IL 60402

708-217-3196begin_of_the_skype_highlighting            708-217-3196Â\

 Â Â Â Â Â end_of_the_skype_highlighting

www.mothersonamission.net

www.noewait.net

" Don't judge me because as far as I know I haven't let you borrow my shoes to

walk in. "

----- Forwarded Message ----

From: Carol Boyke

FYI:

________________________________

ACTION ALERT

Tell the CDC " No " on Abuse-Enabling " Wandering "

Code!

Greetings!

Last week, the ICD-9-CM Coordination and

Maintenance Committee met to discuss the future of

medical coding in the United States. The ICD-9-CM

stands for the International Classification of

Diseases, Ninth Revision, Clinical Modification,

and is the US government's official system of

assigning codes to medical diagnoses and

procedures. The day before the meeting, the

Centers for Disease Control and Prevention (CDC)

posted for the first time information on the

codes under consideration - including a new

medical diagnosis for " wandering " related

behavior in children and adults on the autism

spectrum and with other developmental

disabilities. If approved, this new coding

promises to label hundreds of thousands of

children with " wandering " diagnoses that would

make it easier for school districts and

residential facilities to justify restraint and

seclusion in the name of treatment. Furthermore,

this diagnosis carries no clear definition and the

CDC's proposal uses poor quality research to claim

that it should apply to the majority of autistic

children and those with other developmental and

intellectual disabilities.

The CDC's last minute proposal was made public

only the day before the public hearing on these

coding was scheduled to occur - well after the

registration for people to give public comment had

closed! Our only chance to have our voices be

heard is to flood the written comment session

before that deadline passes on April 1st. To do

that, we need your help! Here's what you can do:

1. First, send an e-mail to to CDC's co-chair

of the ICD-9-CM Coordination and Maintenance

Committee telling them to REJECT a medical

label for " wandering " -related behavior. Her

name is Donna Pickett and her e-mail

is dfp4@.... Remember, they have to hear

from us by April 1st! We've provided some

talking points to help you make your case:

* Labeling hundreds of thousands of children

with a " wandering " diagnosis will increase

restraint and seclusion in schools: One of the

consistent messages from our community in last

year's advocacy for federal legislation to stop

restraint and seclusion in schools was that when

schools plan to restrain students, they do

restrain students - frequently with tragic

results. By labeling hundreds of thousands of

school children with disabilities with a

diagnosis of " wandering " , CDC will encourage

districts to plan for the use of restraint for

these students in Individualized Education Plans

(IEPs) and school safety planning. Furthermore,

by claiming that " wandering " is an unavoidable

medical diagnosis instead of a behavioral

response to specific circumstances, children

with little to no communication needs may lose

one of their last ways of making family members

and educators aware of abusive or sensorily

overwhelming environments: trying to leave a

dangerous situation. Far from making children

with disabilities safer, this proposal will

enable abuse " in the name of treatment " and make

it harder for non-speaking students to

communicate problems to their families.

* The " wandering " diagnosis lacks meaningful

research support: There exists no research

to classify " wandering " as a medical rather than

a behavioral issue. This proposal is being

pushed forward without meaningful research

support. In fact, one of the few " studies " that

the CDC does site is a 2007 online poll on the

website of an advocacy group in support of this

proposal claiming that this code could apply to

as many as 92% of autistic children. An online

poll on a web site mainly visited by supporters

of the proposal is not a scientifically valid

survey instrument.

* The use of the " wandering " label on adults

will enable abuse and restrict the civil rights

of Americans with Disabilities: As

children labeled with this diagnosis grow up, a

" wandering " label could be used as a factor to

justify guardianship - the stripping of legal

capacity - in areas where it otherwise would not

be deemed acceptable. Advocates of a " wandering "

label make the case that its usage would enable

insurance coverage for tracking devices, whose

use for adults would restrict freedom of

movement and make it harder for individuals to

flee abusive situations. Furthermore, this

diagnosis will increase the usage of more

restrictive service-provision placements, like

institutions and group homes, as a way of

countering the " flight risk " that labeled

individuals will be presumed to pose.

2. Sign ASAN's petition to tell CDC to reject

and withdraw this ill-considered proposal to

create a " wandering " medical diagnosis. A link

can be found

at:http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffI\

W35dnsIiZLIg9zVrXXv3LC2PFzi58EKFgdwk9VJaI8VrXv1GquVvIPcn4e2xhmuv-DdttUYAz1ym-Xe5\

P-PuwUSnGSKojaHQ_n3QlhgJd4MWjbVzdWEwdvMDKGmEFsRnFeUIJjWCPtuURcLmtscd3WYnsNXNeVlf\

ddwUAWo4md5WI6KBTu_wcDMH

3. Disseminate this action alert to your

friends and family members as well as members

of local, state and national advocacy groups

you may belong to who can pass it along to

their members. Encourage them to e-mail or call

ASAN to find out how they can lend their

support to our efforts to oppose abuse. Help us

spread the word to stand up against abuse!

Remember, we only have till April 1st! Thank you

for taking the time to weigh in and we appreciate

your support as we continue the struggle against

abuse and for our civil and human rights.

Regards,

Ari Ne'eman

President

The Autistic Self Advocacy Network

http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffIW35\

IqxVwJhYKi79Rwle-MtNkfP8rgNAjPv8f58YuAP9zrHlL6A4sqaL7pzi3che7rEJ7ncOmamOfDXPeLAP\

AwFX4ZIFBcUhsnKbUaQKSgJreVTgWPhdfYOxP

info@...

(202) 596-1056begin_of_the_skype_highlighting            (202)

596-1056      end_of_the_skype_highlighting

The Autistic Self-Advocacy Network (ASAN) is a

non-profit organization run by and for Autistic

people, fighting for disability rights in the

world of autism. Working in fields such as public

policy, media representation, research and

systems change, ASAN hopes to empower Autistic

people across the world to take control of their

own lives and the future of our common community.

Link to comment
Share on other sites

Guest guest

I learned something interesting years ago in a class on mental illness about the

kind of mistakes medical professionals (and here include CDC and therefore

schools, in this instance) are willing to make versus the mistakes our legal

system will tolerate.  There's a presumption of innocence (and protections in

criminal proceedings) in law because of a societal agreement that it's better to

let a guilty person go free than to lock up an innocent person.

But in the medical model, when there's uncertainty as to a diagnosis, it's

generally considered better to treat than not to treat - the thinking being that

an untreated illness is the graver mistake.  Built into that is

an assumption

that " treatment " is at worst benign.   And we know to be wary of things done

in

the name of treatment.

A wandering diagnosis could have a potential range of effects.  When my son was

in grade school, I went as a parent helper on a field trip.  Another boy in the

class may well have had an ADHD label.  He was pretty bouncy, and I worried all

through the museum that he'd get lost.  He didn't.  A wandering label might

have

excluded him from field trips and other activities as being at risk.

Bonnie Dohogne

________________________________

From: Young <nathan@...>

IPADDUnite

Sent: Wed, March 16, 2011 12:50:56 PM

Subject: Re: ACTION ALERT: Tell CDC " NO " on abuse-enabling

" wandering " code!

 

I've seen it happen to others and I've been threatened one time in the name of

treatment. I needed to say at a county facility as I asked for help during a

heat wave. A young man didnt get hiz seizure meds and had a massive grand-mal on

the cement floor. I was then threatened and drugged shortly after and I was not

adverse other then to there reputation. The following day I saw a severaly

developmentally disabled young man confined, isolated and bound for simply

clapping.

I put it on California wide radio and a letter from my congressman on my

complainant website.

Yet sometimes people need to be protected and I want balance. It's scary to

assume of myself my experience was typical but if others are not protected they

could also die.

Young

ACTION ALERT: Tell CDC " NO " on abuse-enabling " wandering "

code!

More work for all of us to do, but we have to do it for our loved ones.

Please Share!!!

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

" Don't judge me because as far as I know I haven't let you borrow my shoes to

walk in. "

----- Forwarded Message ----

From: Carol Boyke

FYI:

________________________________

ACTION ALERT

Tell the CDC " No " on Abuse-Enabling " Wandering "

Code!

Greetings!

Last week, the ICD-9-CM Coordination and

Maintenance Committee met to discuss the future of

medical coding in the United States. The ICD-9-CM

stands for the International Classification of

Diseases, Ninth Revision, Clinical Modification,

and is the US government's official system of

assigning codes to medical diagnoses and

procedures. The day before the meeting, the

Centers for Disease Control and Prevention (CDC)

posted for the first time information on the

codes under consideration - including a new

medical diagnosis for " wandering " related

behavior in children and adults on the autism

spectrum and with other developmental

disabilities. If approved, this new coding

promises to label hundreds of thousands of

children with " wandering " diagnoses that would

make it easier for school districts and

residential facilities to justify restraint and

seclusion in the name of treatment. Furthermore,

this diagnosis carries no clear definition and the

CDC's proposal uses poor quality research to claim

that it should apply to the majority of autistic

children and those with other developmental and

intellectual disabilities.

The CDC's last minute proposal was made public

only the day before the public hearing on these

coding was scheduled to occur - well after the

registration for people to give public comment had

closed! Our only chance to have our voices be

heard is to flood the written comment session

before that deadline passes on April 1st. To do

that, we need your help! Here's what you can do:

1. First, send an e-mail to to CDC's co-chair

of the ICD-9-CM Coordination and Maintenance

Committee telling them to REJECT a medical

label for " wandering " -related behavior. Her

name is Donna Pickett and her e-mail

is dfp4@.... Remember, they have to hear

from us by April 1st! We've provided some

talking points to help you make your case:

* Labeling hundreds of thousands of children

with a " wandering " diagnosis will increase

restraint and seclusion in schools: One of the

consistent messages from our community in last

year's advocacy for federal legislation to stop

restraint and seclusion in schools was that when

schools plan to restrain students, they do

restrain students - frequently with tragic

results. By labeling hundreds of thousands of

school children with disabilities with a

diagnosis of " wandering " , CDC will encourage

districts to plan for the use of restraint for

these students in Individualized Education Plans

(IEPs) and school safety planning. Furthermore,

by claiming that " wandering " is an unavoidable

medical diagnosis instead of a behavioral

response to specific circumstances, children

with little to no communication needs may lose

one of their last ways of making family members

and educators aware of abusive or sensorily

overwhelming environments: trying to leave a

dangerous situation. Far from making children

with disabilities safer, this proposal will

enable abuse " in the name of treatment " and make

it harder for non-speaking students to

communicate problems to their families.

* The " wandering " diagnosis lacks meaningful

research support: There exists no research

to classify " wandering " as a medical rather than

a behavioral issue. This proposal is being

pushed forward without meaningful research

support. In fact, one of the few " studies " that

the CDC does site is a 2007 online poll on the

website of an advocacy group in support of this

proposal claiming that this code could apply to

as many as 92% of autistic children. An online

poll on a web site mainly visited by supporters

of the proposal is not a scientifically valid

survey instrument.

* The use of the " wandering " label on adults

will enable abuse and restrict the civil rights

of Americans with Disabilities: As

children labeled with this diagnosis grow up, a

" wandering " label could be used as a factor to

justify guardianship - the stripping of legal

capacity - in areas where it otherwise would not

be deemed acceptable. Advocates of a " wandering "

label make the case that its usage would enable

insurance coverage for tracking devices, whose

use for adults would restrict freedom of

movement and make it harder for individuals to

flee abusive situations. Furthermore, this

diagnosis will increase the usage of more

restrictive service-provision placements, like

institutions and group homes, as a way of

countering the " flight risk " that labeled

individuals will be presumed to pose.

2. Sign ASAN's petition to tell CDC to reject

and withdraw this ill-considered proposal to

create a " wandering " medical diagnosis. A link

can be found

at:http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffI\

W35dnsIiZLIg9zVrXXv3LC2PFzi58EKFgdwk9VJaI8VrXv1GquVvIPcn4e2xhmuv-DdttUYAz1ym-Xe5\

P-PuwUSnGSKojaHQ_n3QlhgJd4MWjbVzdWEwdvMDKGmEFsRnFeUIJjWCPtuURcLmtscd3WYnsNXNeVlf\

ddwUAWo4md5WI6KBTu_wcDMH

3. Disseminate this action alert to your

friends and family members as well as members

of local, state and national advocacy groups

you may belong to who can pass it along to

their members. Encourage them to e-mail or call

ASAN to find out how they can lend their

support to our efforts to oppose abuse. Help us

spread the word to stand up against abuse!

Remember, we only have till April 1st! Thank you

for taking the time to weigh in and we appreciate

your support as we continue the struggle against

abuse and for our civil and human rights.

Regards,

Ari Ne'eman

President

The Autistic Self Advocacy Network

http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffIW35\

IqxVwJhYKi79Rwle-MtNkfP8rgNAjPv8f58YuAP9zrHlL6A4sqaL7pzi3che7rEJ7ncOmamOfDXPeLAP\

AwFX4ZIFBcUhsnKbUaQKSgJreVTgWPhdfYOxP

info@...

(202) 596-1056

The Autistic Self-Advocacy Network (ASAN) is a

non-profit organization run by and for Autistic

people, fighting for disability rights in the

world of autism. Working in fields such as public

policy, media representation, research and

systems change, ASAN hopes to empower Autistic

people across the world to take control of their

own lives and the future of our common community.

Link to comment
Share on other sites

Guest guest

Protectionism and Fundimental Freedom. Being overprotective decreases liability

due to risk and being reckless with freedom increases liability due to

negligence \ neglect. The balance here is found subjectively with an individual

and as an individual shows the ability not to be a risk to themselves or proves

they are a risk to themselves freedoms are limited or enhanced. In the case of

adults freedom is innately assumed and in cases of children the rights are

determined by the parents.

ACTION ALERT: Tell CDC " NO " on abuse-enabling

" wandering "

code!

More work for all of us to do, but we have to do it for our loved ones.

Please Share!!!

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

" Don't judge me because as far as I know I haven't let you borrow my shoes to

walk in. "

----- Forwarded Message ----

From: Carol Boyke

FYI:

________________________________

ACTION ALERT

Tell the CDC " No " on Abuse-Enabling " Wandering "

Code!

Greetings!

Last week, the ICD-9-CM Coordination and

Maintenance Committee met to discuss the future of

medical coding in the United States. The ICD-9-CM

stands for the International Classification of

Diseases, Ninth Revision, Clinical Modification,

and is the US government's official system of

assigning codes to medical diagnoses and

procedures. The day before the meeting, the

Centers for Disease Control and Prevention (CDC)

posted for the first time information on the

codes under consideration - including a new

medical diagnosis for " wandering " related

behavior in children and adults on the autism

spectrum and with other developmental

disabilities. If approved, this new coding

promises to label hundreds of thousands of

children with " wandering " diagnoses that would

make it easier for school districts and

residential facilities to justify restraint and

seclusion in the name of treatment. Furthermore,

this diagnosis carries no clear definition and the

CDC's proposal uses poor quality research to claim

that it should apply to the majority of autistic

children and those with other developmental and

intellectual disabilities.

The CDC's last minute proposal was made public

only the day before the public hearing on these

coding was scheduled to occur - well after the

registration for people to give public comment had

closed! Our only chance to have our voices be

heard is to flood the written comment session

before that deadline passes on April 1st. To do

that, we need your help! Here's what you can do:

1. First, send an e-mail to to CDC's co-chair

of the ICD-9-CM Coordination and Maintenance

Committee telling them to REJECT a medical

label for " wandering " -related behavior. Her

name is Donna Pickett and her e-mail

is dfp4@.... Remember, they have to hear

from us by April 1st! We've provided some

talking points to help you make your case:

* Labeling hundreds of thousands of children

with a " wandering " diagnosis will increase

restraint and seclusion in schools: One of the

consistent messages from our community in last

year's advocacy for federal legislation to stop

restraint and seclusion in schools was that when

schools plan to restrain students, they do

restrain students - frequently with tragic

results. By labeling hundreds of thousands of

school children with disabilities with a

diagnosis of " wandering " , CDC will encourage

districts to plan for the use of restraint for

these students in Individualized Education Plans

(IEPs) and school safety planning. Furthermore,

by claiming that " wandering " is an unavoidable

medical diagnosis instead of a behavioral

response to specific circumstances, children

with little to no communication needs may lose

one of their last ways of making family members

and educators aware of abusive or sensorily

overwhelming environments: trying to leave a

dangerous situation. Far from making children

with disabilities safer, this proposal will

enable abuse " in the name of treatment " and make

it harder for non-speaking students to

communicate problems to their families.

* The " wandering " diagnosis lacks meaningful

research support: There exists no research

to classify " wandering " as a medical rather than

a behavioral issue. This proposal is being

pushed forward without meaningful research

support. In fact, one of the few " studies " that

the CDC does site is a 2007 online poll on the

website of an advocacy group in support of this

proposal claiming that this code could apply to

as many as 92% of autistic children. An online

poll on a web site mainly visited by supporters

of the proposal is not a scientifically valid

survey instrument.

* The use of the " wandering " label on adults

will enable abuse and restrict the civil rights

of Americans with Disabilities: As

children labeled with this diagnosis grow up, a

" wandering " label could be used as a factor to

justify guardianship - the stripping of legal

capacity - in areas where it otherwise would not

be deemed acceptable. Advocates of a " wandering "

label make the case that its usage would enable

insurance coverage for tracking devices, whose

use for adults would restrict freedom of

movement and make it harder for individuals to

flee abusive situations. Furthermore, this

diagnosis will increase the usage of more

restrictive service-provision placements, like

institutions and group homes, as a way of

countering the " flight risk " that labeled

individuals will be presumed to pose.

2. Sign ASAN's petition to tell CDC to reject

and withdraw this ill-considered proposal to

create a " wandering " medical diagnosis. A link

can be found

at:http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffI\

W35dnsIiZLIg9zVrXXv3LC2PFzi58EKFgdwk9VJaI8VrXv1GquVvIPcn4e2xhmuv-DdttUYAz1ym-Xe5\

P-PuwUSnGSKojaHQ_n3QlhgJd4MWjbVzdWEwdvMDKGmEFsRnFeUIJjWCPtuURcLmtscd3WYnsNXNeVlf\

ddwUAWo4md5WI6KBTu_wcDMH

3. Disseminate this action alert to your

friends and family members as well as members

of local, state and national advocacy groups

you may belong to who can pass it along to

their members. Encourage them to e-mail or call

ASAN to find out how they can lend their

support to our efforts to oppose abuse. Help us

spread the word to stand up against abuse!

Remember, we only have till April 1st! Thank you

for taking the time to weigh in and we appreciate

your support as we continue the struggle against

abuse and for our civil and human rights.

Regards,

Ari Ne'eman

President

The Autistic Self Advocacy Network

http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffIW35\

IqxVwJhYKi79Rwle-MtNkfP8rgNAjPv8f58YuAP9zrHlL6A4sqaL7pzi3che7rEJ7ncOmamOfDXPeLAP\

AwFX4ZIFBcUhsnKbUaQKSgJreVTgWPhdfYOxP

info@...

(202) 596-1056

The Autistic Self-Advocacy Network (ASAN) is a

non-profit organization run by and for Autistic

people, fighting for disability rights in the

world of autism. Working in fields such as public

policy, media representation, research and

systems change, ASAN hopes to empower Autistic

people across the world to take control of their

own lives and the future of our common community.

Link to comment
Share on other sites

Guest guest

Thank you! I will be forwarding this and put it on facebook!!!

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

" Don't judge me because as far as I know I haven't let you borrow my shoes to

walk in. "

________________________________

From: Terrill <fickerterrill@...>

IPADDUnite

Sent: Wed, March 16, 2011 1:19:00 PM

Subject: Re: ACTION ALERT: Tell CDC " NO " on abuse-enabling

" wandering " code!

here is a simpler version for self-advocates that I translated ...

Greetings!

This is a notice about an action that will affect people with disabilities.

The US government has an official system that assigns codes to medical diagnoses

and procedures. It is called ICD-9-CM.

The Centers for Disease Control and Prevention (CDC) wants to add a new medical

diagnosis or code for " wandering " related behavior in children and adults on the

autism spectrumand with other developmental disabilities.

If this is approved, this new coding will label thousands of children with

" wandering " diagnoses that would make it easier for schools and group homes to

restrain children and adults with disabilities and put them in seclusion in the

name of treatment.

At this time the diagnosis of wandering has no clear definition and uses poor

quality research to claim that it should apply to the majority of children with

autism childrenand those with other developmental and intellectual disabilities.

Do you want people locked up because they wander away?

Do you want people put in restraints because they wander away?

Our only chance to have our voices be heard is to flood the written comment

session before that deadline passes on April 1st. To do that, we need your help!

Here's what you can do:

1. First, send an e-mail to Donna Pickett at dfp4@.... Tell her to

REJECT a medical label for " wandering " behavior.

2. Remember, you only have until April 1st!

3. Sign ASAN's petition to tell CDC to reject and withdraw this ill-considered

proposal to create a " wandering " medical diagnosis. A link can be found

at:http://www.change.org/petitions/tell-the-cdc-no-on-abuse-enabling-wandering-c\

ode

4. Get this out to your friends and family members. Get this out to local,

state and national advocacy groups you may belong to who can pass it along to

their members. Ask them to e-mail or call ASAN to find out how they can lend

their support to our efforts to oppose abuse. Help us spread the word to stand

up against abuse!

Here are some talking points to help you make your case:

* Labeling hundreds of thousands of children with a " wandering " diagnosis will

increase restraint and seclusion in schools:

We need to stop restraint and seclusion in schools. When schools restrain

students, often they get hurt. By labeling hundreds of thousands of school

children with disabilitieswith a diagnosis of " wandering " , this will encourage

districts to plan for the use of restraint for these students in Individualized

Education Plans(IEPs) and school safety planning.

If we let the government say that " wandering " is a medical diagnosisinstead of a

behavioral response to life, then children with little to no communication needs

may lose one of their last ways of making family members and educators aware of

abusive or overwhelming environments.

This action does not keep children with disabilitiessafer. It may allow enable

abuse " in the name of treatment " and make it harder for non-speaking students to

communicate problems to their families.

* The " wandering " diagnosis does not have good research support: There is no

research to classify " wandering " as a medical rather than a behavioral issue.

This proposal is being pushed forward without good research.

* This code OF “WANDERING†could apply to as many as 92% of children with

autism..

* The use of the " wandering " label on adults may encourage the sue of

restraints and seclusion and restrict the civil rights of Americans with

Disabilities: As children labeled with this diagnosis grow up, a " wandering "

label could be used as a factor to justify guardianship - the stripping of legal

rights - in areas where it otherwise would not be deemed acceptable. Advocates

of a " wandering " label make the case that its use would allow insurance coverage

for tracking devices, whose use for adults would restrict freedom of movement

and make it harder for individuals to flee abusive situations. Furthermore, this

diagnosis will increase the use of more restrictive service-provision

placements, like institutions and group homes, as a way of countering the

" flight risk " that labeled individuals will be presumed to pose.

Remember, we only have till April 1st! Thank you for taking the time to weigh in

and we appreciate your support as we continue the struggle against abuse and for

our civil and human rights.

Ficker Terrill, CEO

Institute on Public Policy

cathyfickerterrill@...

630-202-6701begin_of_the_skype_highlighting 630-202-6701

end_of_the_skype_highlighting

________________________________

From: Bedard <cathybedard@...>

IPADDUnite

Sent: Wed, March 16, 2011 12:55:04 PM

Subject: Re: ACTION ALERT: Tell CDC " NO " on abuse-enabling

" wandering " code!

Very well stated. I just don't know where the balance will come in.

Bedard, PLA

Ricky, andra and 's Mom

Mothers on a Mission, Inc.

6515 Stanley Avenue #4

Berwyn, IL 60402

708-217-3196begin_of_the_skype_highlighting 708-217-3196

end_of_the_skype_highlighting

www.mothersonamission.net

www.noewait.net

" Don't judge me because as far as I know I haven't let you borrow my shoes to

walk in. "

________________________________

From: Young <nathan@...>

IPADDUnite

Sent: Wed, March 16, 2011 12:50:56 PM

Subject: Re: ACTION ALERT: Tell CDC " NO " on abuse-enabling

" wandering " code!

I've seen it happen to others and I've been threatened one time in the name of

treatment. I needed to say at a county facility as I asked for help during a

heat wave. A young man didnt get hiz seizure meds and had a massive grand-mal on

the cement floor. I was then threatened and drugged shortly after and I was not

adverse other then to there reputation. The following day I saw a severaly

developmentally disabled young man confined, isolated and bound for simply

clapping.

I put it on California wide radio and a letter from my congressman on my

complainant website.

Yet sometimes people need to be protected and I want balance. It's scary to

assume of myself my experience was typical but if others are not protected they

could also die.

Young

ACTION ALERT: Tell CDC " NO " on abuse-enabling " wandering "

code!

More work for all of us to do, but we have to do it for our loved ones.

Please Share!!!

Bedard, PLA

Ricky, andra and 's Mom

Mothers on a Mission, Inc.

6515 Stanley Avenue #4

Berwyn, IL 60402

708-217-3196begin_of_the_skype_highlighting 708-217-3196

end_of_the_skype_highlighting

www.mothersonamission.net

www.noewait.net

" Don't judge me because as far as I know I haven't let you borrow my shoes to

walk in. "

----- Forwarded Message ----

From: Carol Boyke

FYI:

________________________________

ACTION ALERT

Tell the CDC " No " on Abuse-Enabling " Wandering "

Code!

Greetings!

Last week, the ICD-9-CM Coordination and

Maintenance Committee met to discuss the future of

medical coding in the United States. The ICD-9-CM

stands for the International Classification of

Diseases, Ninth Revision, Clinical Modification,

and is the US government's official system of

assigning codes to medical diagnoses and

procedures. The day before the meeting, the

Centers for Disease Control and Prevention (CDC)

posted for the first time information on the

codes under consideration - including a new

medical diagnosis for " wandering " related

behavior in children and adults on the autism

spectrum and with other developmental

disabilities. If approved, this new coding

promises to label hundreds of thousands of

children with " wandering " diagnoses that would

make it easier for school districts and

residential facilities to justify restraint and

seclusion in the name of treatment. Furthermore,

this diagnosis carries no clear definition and the

CDC's proposal uses poor quality research to claim

that it should apply to the majority of autistic

children and those with other developmental and

intellectual disabilities.

The CDC's last minute proposal was made public

only the day before the public hearing on these

coding was scheduled to occur - well after the

registration for people to give public comment had

closed! Our only chance to have our voices be

heard is to flood the written comment session

before that deadline passes on April 1st. To do

that, we need your help! Here's what you can do:

1. First, send an e-mail to to CDC's co-chair

of the ICD-9-CM Coordination and Maintenance

Committee telling them to REJECT a medical

label for " wandering " -related behavior. Her

name is Donna Pickett and her e-mail

is dfp4@.... Remember, they have to hear

from us by April 1st! We've provided some

talking points to help you make your case:

* Labeling hundreds of thousands of children

with a " wandering " diagnosis will increase

restraint and seclusion in schools: One of the

consistent messages from our community in last

year's advocacy for federal legislation to stop

restraint and seclusion in schools was that when

schools plan to restrain students, they do

restrain students - frequently with tragic

results. By labeling hundreds of thousands of

school children with disabilities with a

diagnosis of " wandering " , CDC will encourage

districts to plan for the use of restraint for

these students in Individualized Education Plans

(IEPs) and school safety planning. Furthermore,

by claiming that " wandering " is an unavoidable

medical diagnosis instead of a behavioral

response to specific circumstances, children

with little to no communication needs may lose

one of their last ways of making family members

and educators aware of abusive or sensorily

overwhelming environments: trying to leave a

dangerous situation. Far from making children

with disabilities safer, this proposal will

enable abuse " in the name of treatment " and make

it harder for non-speaking students to

communicate problems to their families.

* The " wandering " diagnosis lacks meaningful

research support: There exists no research

to classify " wandering " as a medical rather than

a behavioral issue. This proposal is being

pushed forward without meaningful research

support. In fact, one of the few " studies " that

the CDC does site is a 2007 online poll on the

website of an advocacy group in support of this

proposal claiming that this code could apply to

as many as 92% of autistic children. An online

poll on a web site mainly visited by supporters

of the proposal is not a scientifically valid

survey instrument.

* The use of the " wandering " label on adults

will enable abuse and restrict the civil rights

of Americans with Disabilities: As

children labeled with this diagnosis grow up, a

" wandering " label could be used as a factor to

justify guardianship - the stripping of legal

capacity - in areas where it otherwise would not

be deemed acceptable. Advocates of a " wandering "

label make the case that its usage would enable

insurance coverage for tracking devices, whose

use for adults would restrict freedom of

movement and make it harder for individuals to

flee abusive situations. Furthermore, this

diagnosis will increase the usage of more

restrictive service-provision placements, like

institutions and group homes, as a way of

countering the " flight risk " that labeled

individuals will be presumed to pose.

2. Sign ASAN's petition to tell CDC to reject

and withdraw this ill-considered proposal to

create a " wandering " medical diagnosis. A link

can be found

at:http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffI\

W35dnsIiZLIg9zVrXXv3LC2PFzi58EKFgdwk9VJaI8VrXv1GquVvIPcn4e2xhmuv-DdttUYAz1ym-Xe5\

P-PuwUSnGSKojaHQ_n3QlhgJd4MWjbVzdWEwdvMDKGmEFsRnFeUIJjWCPtuURcLmtscd3WYnsNXNeVlf\

ddwUAWo4md5WI6KBTu_wcDMH

3. Disseminate this action alert to your

friends and family members as well as members

of local, state and national advocacy groups

you may belong to who can pass it along to

their members. Encourage them to e-mail or call

ASAN to find out how they can lend their

support to our efforts to oppose abuse. Help us

spread the word to stand up against abuse!

Remember, we only have till April 1st! Thank you

for taking the time to weigh in and we appreciate

your support as we continue the struggle against

abuse and for our civil and human rights.

Regards,

Ari Ne'eman

President

The Autistic Self Advocacy Network

http://r20.rs6.net/tn.jsp?llr=sdpblmeab & et=1104820739663 & s=2937 & e=001PZrepffIW35\

IqxVwJhYKi79Rwle-MtNkfP8rgNAjPv8f58YuAP9zrHlL6A4sqaL7pzi3che7rEJ7ncOmamOfDXPeLAP\

AwFX4ZIFBcUhsnKbUaQKSgJreVTgWPhdfYOxP

info@...

(202) 596-1056begin_of_the_skype_highlighting (202)

596-1056 end_of_the_skype_highlighting

The Autistic Self-Advocacy Network (ASAN) is a

non-profit organization run by and for Autistic

people, fighting for disability rights in the

world of autism. Working in fields such as public

policy, media representation, research and

systems change, ASAN hopes to empower Autistic

people across the world to take control of their

own lives and the future of our common community.

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