3/14/2011

Deconstructing Petitions: Making Evidence-Based Decisions, Not Knee-Jerk Ones

The online disability rights and autism advocacy movements intersect, with appeals from the autism advocacy movement appealing to the larger disability rights movement. Recently, a new petition has been started by the Autistic Self-Advocacy Network calling for individuals to "Tell the CDC 'No' on Abuse-Enabling 'Wandering' Code!"

Online petitions are easy to sign and almost meaningless, but it feels good to take some stand, right? What's interesting to examine is how appeals to sign petitions are made. When is inflammatory, sensationalized rhetoric appropriate and when should appeals be made using evidence-based information presented in a compelling fashion? If you guessed that my take is evidence-based before inflammatory rhetoric is always the way to go, you'd be right.

So which position does this petition from ASAN use? I'll let readers judge.

The petition begins, "Will you help us stand up for disability rights?" Right from the bat, there's an attempt to engage the reader's emotions with the suggestion that disability rights are being denied (and there are times when disability rights sounds really wrong--since when does a disability have rights? People have rights).

It continues, "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." These are informational sentences setting up the coming claims.

ASAN's petition then states, "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." This sentence implies complicity by the CDC to deny the public their right to weigh in and further sets the tone.

Having set the reader up that the government is attempting to deny disability rights while also keeping the public in the dark so as to avoid input, ASAN states its main claim: "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." ASAN offers no evidence for this claim and wanders into inflammatory, sensationalized rhetoric. Having looked at the pages (17 and18) that the CDC provides on wandering, I see no evidence to justify the claim that suddenly "hundreds of thousands of children" would get this diagnosis, nor that "school districts and residential facilities" would stick these labels on individuals in order to "justify restraint and seclusion in the name of treatment." The CDC writes that "Wandering places children and adults with ASD/DD or other disorders in harmful and potentially lifethreatening situations—making this an important safety issue for individuals affected, their families and  caregivers." It then admits "available data are very limited, the majority of wandering fatalities associated with autism are attributed to drowning." Part of the point in discussing adding a diagnostic criteria of wandering to the ICD-9-CM is to "promote (1) better data collection for and understanding of this behavior (2) prompt important safety discussions between healthcare providers, caregivers, and the person with the disability to the full extent possible.  Better data should help to increase awareness and action among first responders, school administrators and residential facility administrators to recognize and understand the wandering and develop proper emergency protocols and response while supporting self-determination principles."

Whether ASAN's officials decided to not believe these goals or to dismiss them out of hand is not clear. The petition follows its main claim with this additional charge: "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." I'd agree that the two pages offer no operationalized definition of wandering and that it relies on two surveys of parents and caregivers, but the CDC's already admitted the limited data and the need to collect more, which this diagnostic label would provide because it would be an additional diagnostic label that is specific to this behavior. I don't know that the CDC is claiming "it should apply to the majority of autistic children and those with other developmental and intellectual disabilities." If it did, there'd be no need of a label, as this behavior would be written into the ASD and ID diagnostic criteria.


ASAN closes its petition with this call to action: "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."

I'm all for people having their voices heard, for self-advocacy, and for making sure that the needs and wants of individuals are heard and that the autonomy of the intellectually disabled is respected. I'm not for sensationalized, inflammatory rhetoric that offers no evidence for its claim. ASAN calls for people to "flood the written comment session" telling "the CDC 'No' on Abuse-Enabling 'Wandering' Code!" without offering evidence-based reasons for doing so.

Rather than reacting in a knee-jerk manner, why not approach this from a rational, evidence-based perspective, asking that the CDC operationalize the definition of wandering (which would have to happen for it to become a diagnostic label); conduct better research into the number of individuals in institutions and group homes who wander, and the number of children with ASDs at home who have wandered; and make safeguards to ensure that a diagnostic label of wandering will not result in unnecessary restraint and that individuals' autonomy will be respected?

The letter that will be sent as part of the petition is no better at offering evidence for its claims, although it goes into greater detail about the potential ills that ASAN believes will result from the addition of a wandering diagnostic label. It does so, though, without detailing the risks, offering only a vague "research shows" claim without elaborating on the research. In a letter in which one of the claims is that the CDC is relying on poor quality research, it's a bit of a stretch. The whole thrust of the letter is fallacious slippery slope appeal that does not take into account the actual information provided in the two pages on wandering that is in the CDC document, which is at most a preliminary call to look at the addition of a wandering label.

Unless ASAN is for individuals with severe intellectual impairments not being protected from wandering off into traffic or other dangerous situations? *+

*I can do sensationalized, inflammatory rhetoric, too. 
+ I don't believe that ASAN is for that.


Added 11:45
One of the claims is that this came to light only one day before the meeting, but that is also not true: http://edocket.access.gpo.gov/2011/2011-3542.htm  
[Federal Register: February 16, 2011 (Volume 76, Number 32)]
[Notices]               
[Page 9018-9019]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr16fe11-57]   

Added 11:58
http://www.cms.gov/ICD9ProviderDiagnosticCodes/Downloads/030911_ICD9_Agenda.pdf
Actual agenda does not show that wandering was discussed.



Added 12:52

It appears that the possible addition of wandering as a diagnostic topic was covered in a letter from the Interagency Autism Coordinating Committee (IACC): "Investigate the use of a medical subclassification coding or general medical coding for ASD wandering, similar to the existing coding for dementia-related wandering that would be specific for children with ASD. Such a medical coding could be used to collect data on ASD-related wandering, establish the need for support and assistance for families affected, and help validate insurance coverage for personal locating devices and related expenses for families who are currently unable to afford them. The Centers for Disease Control and Prevention (CDC) has already submitted a proposal for an ICD-9-CM secondary diagnostic code for “wandering in conditions classified elsewhere” (e.g., autism, mental retardation/intellectual disability, certain genetic disorders). The proposal will be considered by the ICD-9-CM Coordination and Maintenance Committee at its meeting in early March, 2011." (bolding mine)

It should be noted in the paragraph above this one that the anecdotal nature is a problem and study is needed: "While the autism advocacy community reports widespread and serious issues related to wandering based on anecdotes and informal data collection, it  is difficult based on this information to ascertain the scale and scope of the problem. More formally and extensively gathered data will be imperative to understand how many individuals may be at risk, the
settings and circumstances involved, antecedent behaviors, potential causes, effective preventative  supports and interventions, and how often these incidents are reported to the authorities."

More importantly, in the next to the last paragraph is how wandering ought to be addressed: "Develop and test programs to prevent wandering incidents. HHS and the Department of 
Education should work closely with national medical, education and disability organizations to develop preventative information about autism-related wandering to be communicated to parents at the time of  autism diagnosis.  Preventative programs could include parent training, training for children with autism, teacher training, and first responder training. Currently, there is no federal funding to provide training or support to prevent autism-specific wandering. By comparison, the Department of Justice contributes over  $1M annually for first responder training on Alzheimer’s-related wandering and tracking technology."   

No restraint of any kind discussed here.


There is a IACC/NAA document discussing wandering and autism. I'm not a big fan of the NAA; they support pseudoscientific interventions and pass along false information concerning autism and divorce rates. Even this document noted the lack of data: "In a 2007 National Autism Association Survey, 92% of parents reported that their child/children with ASD had wandered from  a safe environment one or multiple times. Parents who are affected by this issue were more likely to respond, so the data reflects a higher percentage."


The one mention of restraint in the document does not involve restraining wanderers: "Establish a sub-committee focusing on safety issues affecting the ASD Community and addressing external causes of death: 

  • Wandering/Elopement 
  • Restraint and Seclusion in Schools
  • Anti-bullying education programs
  • Support for families at the breaking point
  • Education for law enforcement personnel."
Added:
Section on wandering in the Department of Human Health and Services Restraint Reduction manual, starting on page 55. Nowhere in the section on wandering does it ever advise to use restraint.


http://www.cms.gov/CFCsAndCoPs/downloads/restraintreduction.pdf

www.cms.gov

Added March 15:

"This request from CDC stems from a presentation by the National Autism Association given to the Interagency Autism Coordinating Committee at NIH. Wandering and drowning are among the leading causes of death for individuals with autism and we must do everything we can do address these preventable tragedies. Just 3 weeks ago, 2 children with autism died on the same weekend. They were 3 and 7 years old. A medical diagnosis code will establish the need for education and resources for caregivers, doctors and first responders. Non-verbal children are especially challenging to locate when they've gone missing, and too many have suffered horrific deaths.

The IACC - of which Ari is a member - was notified of this dx code request weeks ago. His arguments for self-determination are unfounded and prove that he has no understanding of individuals who are severely affected by autism - and no desire to protect them from harm. People with autism, like Ari, would certainly not be given this diagnosis. He is able to communicate eloquently with others, he can ask for help when needed, he understands potential danger, he does not need 24/7 supervision to keep him safe from injury or death. As a member of IACC, his responsibility is to represent ALL on the spectrum - especially those who are most vulnerable. Fighting this effort to keep our loved ones safe is a callous and heartless move.

We have protection in place for the elderly suffering from Dementia who wander. There is an existing diagnostic code, there are Silver Alert emergency broadcasts systems to help find them when they go missing, there are millions of dollars provided by the DoJ for resources to protect the elderly from wandering. Would you let Grandma wander into a dangerous situation for fear of restricting her "self-determination"? No. Our children deserve at least the same protection.

For caregivers in need of information and resources to help keep your children safe, visit http://www.awaare.org.

Wendy Fournier
President
National Autism Association"





Update March 15, 10:00 am


Wandering was discussed in December. 


http://blog.autismspeaks.org/2010/12/21/december-14-2010-iacc-meeting-summary/


"The Subcommittee’s recommendations included objectives to better understand wandering and fever in persons with ASD to Question 2 of the plan."


"In response to a presentation on Wandering and Autism at the October meeting, the IACC created a subcommittee on safety issues the first task of which is to write the secretary of HHS on the recommendations that were made during the meeting. Lyn Redwood, R.N., M.S.N. Co-Founder and Vice President, Coalition for Safe Minds and Co-chair, Safety Subcommittee, and Alison Singer, President, Autism Science Foundation and Co-chair, Safety Subcommittee, reported on the Subcommittee’s recent meeting. The IACC authorized the Subcommittee to proceed with its information gathering in order to finalize the letter to the secretary. To inform this letter, the Subcommittee’s representatives will meet with the Departments of Education and Justice and will develop a Request for Information (RFI) on wandering. It was also announced that Autism Speaks and the Autism Science Foundation will fund a study utilizing the Interactive Autism Network (IAN) on this issue." (blue bolding mine)




Please take a moment to read http://autismsciencefoundation.wordpress.com/2011/03/16/keep-our-loved-ones-safe-from-wandering-related-injuries-and-death.

10 comments:

farmwifetwo said...

Over the years, I find I fear ASAN more than any government agency wrt the treatment of people with autism. If even half of what Jonathon writes is true. Reading Sarah's latest blast on ableism and responsibility for one's behaviour.... They don't represent the views of me or mine.

Since the demise of the original Autism Hub I haven't read much of their rhetoric. I find it less frustrating that way.

KWombles said...

I was looking at the comments on the petition, and it appears that the emotionalism of fear of restraints has taken over. Nowhere on the CDC document does restraint appear.

I think it's extremely important for people to be well-informed, rational, and evidence-based when making decisions and when engaging in advocacy; when we run with incorrect information and use inflammatory rhetoric, it doesn't add to credibility.

If a diagnostic label of wandering where to be added, my three children would not qualify, but having had to deal with it in the past with them, I can understand a need to quantify the behavior so that positive behavioral supports could be put into place, so that proactive action is taken. Why people instantly go to restraints regarding this, especially when in many institutions the use of restraints has been legally restricted, I don't understand.



http://www.cdc.gov/nchs/data/icd9/TopicpacketforMarch2011_HA1.pdf

Socrates said...

The ICD 10 has many areas of concern for me. e.g.

W22.03 - Walked into stationary object - furniture
W22.02 - Walked into stationary object - lamppost
W22.01 - Walked into stationary object - wall
W22.09 - Walked into stationary object - NOS

KWombles said...

Attack by mammals NEC W55.89

Also something to think about.

http://www.icd10data.com/ICD10CM/EIndex/A

farmwifetwo said...

My youngest has wandered off 3 times so far on the farm.

1st we were putting up the canopy and turned our backs for 30sec. He was in the E woods and my FIL picked him up on the road walking home. 20min later.

2nd time I was in the bathroom, he had just come in from the kiddie wading pool and had used it first. He walked out the door. Luckily Dh and FIL saw him wandering across the yard to the barn. How he got through the granary - which hasn't been used in forever and full of machinery - to the main barn floor without being hurt... Through a door that hasn't been used in forever...

3rd time I went to the library, Dh got a phone call. He crossed the road to the field. I watch him return while I and MIL searched the buildings while Dh was travelling around the fields.

Toss in the times he's vanished at school you'll understand why his first school put a fence up on the primary side and the new school finished the 2nd half of the fence last summer before he arrived. I don't think any other child's IPRC has ever paid for fencing.

B/c he's been taken most days in the summer, around the farm on the gator, he is not lost. But it is the longest 20min of your life. For this reason, in Sept I went to the OPP and had him registered as autistic and a runner. I have to do this every year. He doesn't run anymore, but he does still wander off when something interests him.

When he went to see Disney on Ice his social story read "must hold hands".

We take flight risk seriously. We work daily to teach him to stay close and last summer was the first I could work across the lane in my garden from the playset.

It's nothing to lobby against. Unless you want to be responsible for those children and adults that wander off and are harmed or killed.

KWombles said...

Thanks; after reading comments over at the petition site that "The desire to go for a walk is not a pathology," I'm appalled at the lack of understanding people can have of just how terrifying it can be to have a child wander.

There is nothing in the two pages from the CDC to indicate that wandering labels would lead to people being restrained, and looking at the HHS's manual on reducing restraint, makes it clear that the goal would be to set in place preventative programs.

Alexander Cheezem said...

As a note, this is about the ICD-9-CM, not the ICD-9 proper. As such, it's about a government billing code, not a clinical diagnostic code.

(And yes, I realize that the ASAN documentation does not make this clear.)

Sarah said...

Kim

I love this post. I have made my living doing persuasive communication and advocacy for almost 20 years, and I spend a lot of time thinking about the right [and ethical, and effective] balance between agitation and education in my advocacy writing. I spend most of my day writing web copy for this kind of on-line petition, and your post brings up lots of thoughts that will take some time to flesh out.

I've had a half-written mess of a post about this languishing in my drafts folder for months — maybe this is the motivation I need to finish it.

KWombles said...

Sarah,

Thanks. :-) It sounds like a challenging and interesting job. I wish factual information were solely persuasive, but I know that it's not; appropriately placed anecdotes that create an emotional investment is absolutely vital to getting people to act.

It just chaps my hide no end when fallacious appeals are used; when the rhetoric is no different than the rhetoric the anti-vaccine camp uses, with as much evidence as they have, it's incredibly frustrating to see people whipped up into a frenzy and ready to email extremist messages not based on fact.

I hope it is the motivation you needed; I love your posts!

Diane said...

Thanks, Kim. I am not as well-informed as I should be on some of these issues, and it just seems too daunting to go wandering around the Internet at random trying to get good information with what time I have available. I appreciate you providing factual information and making clear the reasons for your own observations.