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

[Guest guest]

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.

[Guest guest]

How do we handle labels those who are ADHD-like and " bolters " in childhood who

outgrow it?

Neal was a real bolter in his pre-school/kindergarten years, and it probably

ended (in familiar surroundings, anyway) once he became really verbal.

I want to protect wandering kids, especially young ones, but I hope the CDC

makes clear that this can be a temporary dx in the case of young kids.

-Gail

----- Forwarded Message ----

From: Bonnie Dohogne <bdohogne@...>

IPADDUnite

Sent: Wed, March 16, 2011 1:40:05 PM

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

" wandering " code!

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.