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

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Forwarded message from the Autistic Self Advocacy Network:
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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 [email protected]. 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://www.change.org/petitions/tell-th ... ering-code

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://www.autisticadvocacy.org/

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.

how do these tracking devices enable abuse.i dont see that.abuse can happen with or without a tracking device.if a patient left a abusive institution without such a divice the police would find the lost patient anyway.the only way to stop abuse is ti properly monitor institutions

I've just gotten a letter from ASAN about this.

I did sign the petition, out of concern a "wandering" diagnosis could lead to increased use of restraints, seclusion and institutional placements. I agree with ASAN that it's a valid concern.

While reading the mass email Ari Ne'eman sent out, though, I did wonder if the "wandering" code could create opportunities for people with autism to have additional services paid for through medical insurance. I coordinate a cross-disabilities environmental modifications program and we sometimes provide things like door alarm systems for caregivers of people who wander. (A much less humanizing approach than, say, having a parent use a leash on a child, which I've seen from time to time).

In Pennsylvania, where we have Act 62 (The Autism Insurance Act that mandates insurance companies must pay for certain medically necessary services for people on the Spectrum) and an adult autism Home and Community-Based Services Waiver, it is still very difficult for some people to get their environmental mod's paid for and, as a result, many people who could benefit from these services go without. Most other states are even worse, from what I hear. This diagnosis could validate some mod's as being medically necessary, if there is any 'silver lining' here.

the asan is a joke

The ASAN is doing valuable work in numerous fields. It is supported by thousands of autistics around the world.
How can it be viewed as a joke?

While I can see that there are those who would benefit from this, I think the potential for abuse of it is quite high. I would like to see some high priced lawyer put some very precise language in this to prevent the potential for abuse while still allowing those that need it the ability to receive the safety benefits.

I'm beginning to think you know how to say just the wrong things at the right time to get the reactions you really want.

Restraint does save lives but overused \ abused causes harm. I've seen two abuses of this in a short period of time by a county government in California. During a heat wave I had to ask for help. A person under the age of 18 came into a county facility and needed meds which they ignored for his seizure disorder. He ended up having a grand-mal plopping on the cement. I complained in a reasonable way of neglect \ negligence and was forced meds as a result that had me forgetting most of it and was threatened restraint and receive a shot for asking to talk to the supervisor and the complaint was never heard. I remember drolling and sitting on the floor after the meds. After this a person with severe developmental disabilities was confined and isolated for clapping out of turn.

The complaint ended up on California wide radio on KGO with a Congressman letter on the complainant website. Never had I been in such a place before. It felt helpless to see how folks are treated, not treated correctly and procedures abused. I believe restraint is needed when appropriate and do not entrust this wisdom entirely with advocates but that of professionals as well.

i know they do some good,probably a lesser evil between autism speaks.i still dont get where this monintering devices can cause abuse.if someone runs from a abuser who has legal custody they will be found eventualy anyway.i was in a reay bad mood yesterday apologies to the asan

[youtube]http://www.youtube.com/watch?v=n_hjvps0FQ4&feature=player_embedded#at=30[/youtube]

Perfect song for this post.

The problem with ASAN and other related groups is they tend to make bigots out of good people just because they have a form of autism and think that's all they need to say to get their way. They have no right to evade the rights to safety and choice of others. It's kind of like a religious group but based on a diagnostic label. Oppose cure but then when called on it redefine the meaning of cure and when people need to be restrained and kept track of oppose it full on without professional input. It's half a**ed PR and may do more harm then good. ASAN and other micro-organizations have caused allot of harm toward the human rights of individuals with autism such as myself. It's not all bad but I'll keep them in check as much as I can and I'll likely be called an N.T or autism bigot for it. It's a good thing I have a long history of advocacy in the media myself, a strong track-record of public relations as well and an audacity not to agree with peer pressure when I don't think it's right.

Government knows autistics are less likely to conform so they are infringing on our rights. Fascist police state is fascist.

Back to the Nazi bull again.

ci,thats what i was saying,i still apologize for calling asan a joke but yes they carelessly use terms like discimination and abuse without emperical evidence to back it up.if they keep crying wolf people will eventualy stop listening and then abuse and discrimiation will prevail.the asan does sugercoat reality,and would be outraged if anyone even implied that some people do need extra monitoring and maybe even restraints.i have seen people strapped to beds for 9 months at a time,but whenever they were released they would hurt themelves,what other choice did staff have

They don't redefine cure. Your definition of cure as being the same thing as treatment is incorrect.

Last edited by Jono on 16 Mar 2011, 9:05 am, edited 1 time in total.

Yes, often the restraints and seclusion used in the schools are abusive. At least from the stories I've heard.

Nonsense. Cure means to remedy and Autism implies a wide spectrum of symtoms which are not applicable to all individuals with autism. The proper term is cures which is to remedy different symptoms for different individuals. ASAN is a closed group with a generic name. It's not democratic and does not include in projection diverse opinion. Another group that wishes to control debate of self-advocates. It's agenda is to redefine autism for reasons of abortion.

Open up the ASAN doors to other people that think for themselves or be replaced. All ASAN is and will be thus far is a small group of the top dictating say with little debate and discourse for the true diverse thinking and opinion of individuals with autism. Why fund a dictatorship simply to oppose others advocacy dictatorships. If it wants to claim to be a self-advocacy network then be one otherwise ASAN is going to continue to piss people off and rightfully.