Help provide a voice to stop the addition of the “Wandering” label to ICD-9-CM!

“Labels are for cans, not people.”  T.J. Monroe, APSE Board member; Self Advocate

Background:

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 a "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.

Issue:

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:

Action:

First, send an e-mail  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@cdc.gov.  Remember, they have to hear from us by April 1st!


Talking points to help state the case that there should not be a medical coding label of “wandering”:

1. Labeling hundreds of thousands of children & adults with a "wandering" diagnosis will increase restraint and seclusion utilization unnecessarily in schools and homes.  One of the consistent messages 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. 
2. By labeling hundreds of thousands of school -aged children and adults with disabilities with a diagnosis of "wandering", CDC will encourage districts and adult service providers to plan for the use of restraint for these individuals in Individualized Education Plans (IEPs), school safety planning, and Individual Service Plans (ISPs).   This will limit the ability of people with this label to live, work, and recreate in their communities.
3. By claiming that "wandering" is an unavoidable medical diagnosis instead of a behavioral response to specific circumstances, children and adults with little to no communication needs may lose one of their last ways of making family members, educators, and adult service providers aware of abusive or sensory overwhelming environments, or  trying to leave a dangerous situation. 
4. 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 and adults to communicate problems to their families. 
5.  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. 
6. 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. 
7. 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. 
8. 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.  This label will make it harder for people to receive consideration for employment.

As a member of APSE, please encourage them to reject the “wandering” medical label.
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.


For more information, visit www.apse.org.

Oregon Bill Seeks to Ban Most Use of Restraints, Seclusion

By Nirvi Shah on February 24, 2011 9:15 AM

Published on Education Week

A bill that would ban school districts from restraining or secluding public schoolchildren in most cases and require training for the small numbers of school personnel who employ these practices is making its way through the Oregon legislature.

Although Oregon, like many other states, has a state policy limiting the use of these measures, the organization Disability Rights Oregon found that it's difficult to tell how often they are really used. The report, from earlier this year, said that only 37 of Oregon's 197 school districts compiled data on the use of restraint and seclusion for a one-year period. In those districts, there were approximately 4,500 restraint or seclusion incidents.

"If these numbers are indicative of the other districts who did not submit data, Oregon's statewide restraint and seclusion rate would top 10,000 incidences for one school year," the authors wrote.

The report notes that one Oregon district reported two elementary school students who were restrained or secluded more than 90 times each in the course of one school year. Another district noted some restraints lasted up to two hours at a time.

A 2009 report by the U.S. Government Accountability Office found hundreds of cases of alleged abuse and death related to the use of these methods on schoolchildren during the past two decades

The Oregon bill (House bill 2939) got an initial hearing last week and has a companion bill in the state Senate. It needs a full hearing in the House and then it would move to the Senate's education committee, the staff of sponsor Sara Gelser (D-Corvallis) tells me.

In most circumstances, the bill would ban restraint and seclusion. If necessary because a student is in immediate danger of hurting someone, including himself or herself, such measures can only be done by someone at the school certified in those practices using a program created by the state's department of human services. Kids have to be given access to water and a bathroom every 30 minutes of the seclusion, and every 15 minutes after the first 30 minutes a school administrator has to provide written authorization to extend the exclusion that includes documentation about why the restraint or seclusion must be continued.

The proposed law would ban prone restraints—in which children are face down, mechanical restraints such as duct tape, handcuffs, or straps, and chemical restraints including medications and drugs.

Disability Rights Oregon said although state regulations address the issue, a law is needed because the state education department can't enforce its own rules or hold districts accountable for violating them. In its report, the group said 67 districts did not respond to public records requests, "so we don't know if they have a policy, and if they do, whether that policy complies with the 
administrative rules."

From Coercion to Compassion: Ending Seclusion and Restraint

Article By Kristin Blank, originally posted at:
http://www.samhsa.gov/samhsaNewsLetter/Volume_18_Number_6/EndSeclusionRestraint.aspx

---

Comfort rooms. Humor. Daily interactions. A new training DVD from SAMHSA describes positive alternatives to seclusion and restraint practices.

The DVD, Leaving the Door Open: Alternatives to Seclusion and Restraint, features personal stories, role plays, and suggestions for discussion. The 30-minute program is designed to help staff and
administrators of all types of facilities, including psychiatric facilities, schools, and hospitals.

“This training resource provides practical, how-to information that focuses on collaboration and communication,” said Paolo del Vecchio, M.S.W., Associate Director for Consumer Affairs at SAMHSA’s Center for Mental Health Services. “We want to move from coercion to compassion.” SAMHSA’s Goal

SAMHSA experts have long understood that seclusion and restraint practices do not reduce trauma but exacerbate it. The Agency is working to reduce and ultimately eliminate the use of these practices in institutional and community settings.

“More humane and recovery-focused practices are available to protect consumers and caretakers,” said Mr. del Vecchio. “SAMHSA’s goal is to make this happen as soon as possible. This new DVD is a good start.”

With a focus on open communication among staff and those they serve, the DVD cover also provides questions to stimulate discussion among viewers and resources about ending seclusion and restraint.

The DVD teaches viewers about:

• Comfort rooms, spaces in facilities designed to help patients in distress calm down 
• Personal safety plans, in which children and adult patients document activities that comfort them (i.e., listening to music, reading) as well as “triggers” that stress them (i.e., sounds such as jangling keys)
• Humor and how it can relieve distress and liven up community meetings, especially for children
• Daily interactions and how each encounter between staff members and patients offers an opportunity to extend care and compassion.

More Information & Ordering

The DVD is a companion to SAMHSA’s seclusion and restraint reduction direct care staff training curriculum, Roadmap to Restraint and Seclusion Free Mental Health Services.

Finding alternatives to seclusion and restraint is part of SAMHSA’s Strategic Initiative on Trauma and Justice.