General Info on #StopTheShock -

If You Don’t Know What #StopTheShock is, Read This Summary First

Video Summary, Other Video Summary With Captions from Disability Rights Activists

Short Animated Video (1.5 minutes) About Stop The Shock (transcript in replies)

LinkTree with petition links by @chaitofu on twitter

Action Item 1 For Massachusetts Residents

  1. Use This Form to email to pass the H.225 Bill in MA

  1. For Supporting KASSA

[To email separately from the main ASAN form, email addresses for all Massachusetts senators are here (they are comma-separated to paste all at once into email "to:" field]

Emails of the Massachusetts Children, Families, and Persons with Disability Committee (which can pass the H.225 bill in MA):

Adam.Gomez@masenate.gov, john.velis@masenate.gov, brendan.crighton@masenate.gov, James.Eldridge@masenate.gov, Becca.Rausch@masenate.gov, Patrick.OConnor@masenate.gov, michael.finn@mahouse.gov, natalie.blais@mahouse.gov, jack.lewis@mahouse.gov, tami.gouveia@mahouse.gov, david.leboeuf@mahouse.gov, michelle.ciccolo@mahouse.gov, natalie.higgins@mahouse.gov, carol.doherty@mahouse.gov, jacob.oliveira@mahouse.gov, donald.berthiaume@mahouse.gov, alyson.sullivan@mahouse.gov 

If you are a Massachusetts resident, please let your representatives know that you support the Bill H.225 which limits aversives on disabled students. Letter template is below:

Letter Template for Massachusetts residents

(to email the Massachusetts Children, Families, and Persons with Disabilities Committee):

Email Subject: Support Bill H.225 and Stop the Shock

To the Massachusetts Children, Families, and Persons with Disabilities Committee:

Please stand with the disability community in their heartbreak and outrage by the July 6th court decision that struck down a regulation that would have banned the use of the graduated electronic decelerator (GED) nationally, through the FDA. These devices, which the United Nations has recognized as torture, involve causing severe pain, through skin shocks in an attempt to control behavior. These devices are only used in Massachusetts at the Judge Rotenberg Center (JRC).

The volts on the devices used at the JRC have a maximum amperage of 90 mA, which is only 10 mA less than the potentially lethal amount (100 mA).

This practice is illegal for abled neurotypical children and adults, as well as pets and zoo animals. However it is legal for children and adults who have intellectual disabilities, developmental disabilities, and who are autistic.

Due to Systemic racism POC are institutionalized more often than white disabled people, and comprise 80% of the residents at the JRC.

Please support the MA Bill H.225 by Gregoire of Marlborough “An Act regarding the use of aversive therapy.” This important and necessary bill supports human rights for all, including racial rights, class rights, autistic rights, mental illness rights, and disability rights.

Sincerely,

[Name]

Action Item 1 for Professionals

For Professionals:

Get together with your occupational therapists, speech therapists, psychiatrists, medical professionals, teachers, etc. Write up a letter and sign that letter with your credentials. Make a public statement. Send it to the FDA, the Department of Developmental Services of Massachusetts, the Massachusetts Division of Licensure, any relevant authority.

Action Item 1 For US Citizens Outside of MA

  1. Use This Form to email to pass the H.225 Bill in MA

Can use this form to email the MA Children, Families, and Persons with Disability Committee to support the H.225 Bill in Massachusetts (any US citizen can sign!)

  1. Can Choose Either A. or B. for the Supporting Keeping Students Safe Act (KASSA), a Federal Act -

  1. Can Use OpenLetterBot on Twitter:

Can also use OpenLetterBot on Twitter, Takes 2 clicks to send to representatives about this, and to also support KASSA and to add an amendment to KASSA to prohibit adversives.

Direct Link to ResistBot is Here.

ResistBot Letter has been updated/replaced to use the letter template shown below, feel free to use ResistBot instead of emailing your representatives separately, and just skip down to Action Item 2!

  1. #StopTheShock Template Message to add to the ASAN letter:

[You can include this sentence in your email if you live in MA: “As a Massachusetts resident, I support Bill H.225, which if passed, will prevent the use of aversives, including the GED device, on disabled students.”]

I would also like you to push for an outright ban on the Graduated Electronic Decelerator (GED) device. Please include an amendment in the Keeping All Students Safe Act (KASSA) that would expand the bill’s prohibitions to include aversive interventions and pass this Act. The FDA previously banned the use of this device only in relation to behavior modification, which has just been overturned by the D.C. Circuit Court. The GED devices (GED-1, GED-3a, and GED-4) need to be outright banned as they serve no purpose other than to provide pain and therefore torture to the person receiving it.

The Judge Rotenberg Center tortures autistic people, people with intellectual disabilities, and people with mental illnesses with this shock device. They currently use the GED-3a and GED-4 devices. This GED-4 device gives out up to 90 mA current, nearly up to 3 times over the maximum current limit of the FDA. The GED-3a and GED-4 devices are not approved by the FDA and never have been.

The GED devices accidentally discharge, staff accidentally shock the wrong student, and the students are forced to wear these devices 24/7, including while bathing or showering, which has caused 2nd-degree burns due to malfunctioning in water.

The GED is abusive. Shocking autistic people and people with intellectual disabilities for not taking their coat off fast enough is abusive. This device should not be considered a medical device or a “treatment” in any way. This device is torture.

To learn more, please follow the #StopTheShock hashtag on twitter.

Please push the FDA to ban the GED device outright, and to prevent the restraint and abuse of all autistic people and people with intellectual disabilities in the US.

Urge the legislature to cut the funding of the Judge Rotenberg Center.

Here is a quote from Jennifer Msumba who went to the Judge Rotenberg Center describing the electric shocks that she endured: “It lasts 2 seconds but it feels like 10-15 seconds. The feeling is like this pulsing, pulling, yanking, burning sensation that they get in your arm, leg, whatever spot they shock you in. It doesn't go through your whole body. It will just stay on that one spot where they shock you, but it will tear into it and your whole muscles will clench up and raise up, and you have no control over your muscle for that period of time. It's a terrible pain. I have no idea how to describe it. They describe it as a bee sting, but some people will say it's like a hundred bee stings, it's not just like a little bee sting, it's like a bunch of bee stings. Unless you've been tasered or something, or electrocuted by something, I don't know how to describe the feeling. The pain is really bad.” - Jennifer Msumba, from the Youtube video entitled “Escaping The Judge Rotenberg Center” - www.youtube.com/watch?v=A7hklHN-qqY

Action Item 2 (Anyone Can Do This)

Other organizations to contact via email, with 2 template options below.

Time Limited Places to Email (by July 21st):

Before July 21st (IACC’s NIH meeting is July 21st) -

Can use this form to comment:  https://iacc.hhs.gov/meetings/public-comments/submit/index.jsp 

Or email this address: IACCPublicInquiries@mail.nih.gov

Other Places to email:

Important: Department of Developmental Services of Massachusetts email (This is the place that approves the use of aversives at JRC):

DDSInfo@mass.gov 

Massachusetts Children, Families, and Persons with Disability Committee (which can pass the H.225 bill in MA):

Adam.Gomez@masenate.gov, john.velis@masenate.gov, brendan.crighton@masenate.gov, James.Eldridge@masenate.gov, Becca.Rausch@masenate.gov, Patrick.OConnor@masenate.gov, michael.finn@mahouse.gov, natalie.blais@mahouse.gov, jack.lewis@mahouse.gov, tami.gouveia@mahouse.gov, david.leboeuf@mahouse.gov, michelle.ciccolo@mahouse.gov, natalie.higgins@mahouse.gov, carol.doherty@mahouse.gov, jacob.oliveira@mahouse.gov, donald.berthiaume@mahouse.gov, alyson.sullivan@mahouse.gov 

FDA Email:

DICE@fda.hhs.gov

Applied Behavioral Analysis International emails:

pilgrimc@uncw.edu,  rrehfeldt@thechicagoschool.edu, hughesc@uncw.edu 

Behavior Analysis Certification Board emails:

carr@bacb.com, melissa@bacb.com, tyra@bacb.com 

American Educational Studies Association emails:

flevine@aera.net, lhill@aera.net, gwimberly@aera.net, nbell@aera.net, sspretty50@icloud.com,urrieta@utexas.edu,scbettez@uncg.edu,pgprice@ncat.edu,generettg@duq.edu,pamela.konkol@cuchicago.edu

American Psychological Association (APA)  emails:

jkelly@apaboard.org, fworrell@apaboard.org 

APA Disability Divisions emails:

division@apa.org

APA Promoting Nonviolence - Society of Counseling Psychology emails: 

lgerstein@bsu.edu, anneliese@tulane.edu 

APA For Civil Rights of Disabled People emails -

abishop@apa.org, bvonachen@apa.org 

All APA Emails From Above Collected Here:

jkelly@apaboard.org, fworrell@apaboard.org, division@apa.org, lgerstein@bsu.edu, anneliese@tulane.edu, abishop@apa.org, bvonachen@apa.org 

Massachusetts Division of Licensure emails:

alliedhealth@state.ma.us, amh.board@state.ma.us, pyboard@state.ma.us, swboard@state.ma.us, monique.brown@state.ma.us, REG.Commissioner@state.ma.us,

Canton Massachusetts Board emails (Canton Select Board, Canton Board of Health):

bos@town.canton.ma.us, rslattery@town.canton.ma.us 

Massachusetts Democrats: contact@massdems.org  

Template written for this from the auteach website:

Email Subject: Act Now to Protect the Wellbeing of Autistic People!

To ____________,

I am writing to urge <organization> to issue a public statement condemning 2021, July 6th’s reversal of an FDA regulation that would have banned use of the Graduated Electronic Decelerator (GED) for use in behavior modification at the Judge Rotenberg Educational Center in Massachusetts. This device issues extremely painful skin shocks for the purposes of behavioral modification and has been named a device of torture by the United Nations. Importantly, the Judge Rotenberg Center houses students primarily disabled students of color from New York City, making the ban on the GED a pressing issue of disability and racial justice.

Urge the legislature to cut the funding of the Judge Rotenberg Center.

Please include an amendment in the Keeping All Students Safe Act (KASSA) that would expand the bill’s prohibitions to include aversive interventions and pass this Act.

<add personal notes or story here>

I urge the leadership of <organization>to stand against the use of this device at the Judge Rotenberg Educational Center, a center that has been at the center of controversy for many years because of its continued use of this barbaric practice. We cannot profess to do the work of equity and remain neutral in the face of such violence. When can I expect a statement from <organization> on this issue?

Sincerely,

Your Name

Other Template Option (from @SheRatesRats on twitter):

Email Subject: Act Now to Protect the Wellbeing of Autistic People!

To _____,

As a/n [RELEVANT POSITION], I am writing to urge you to demand that the FDA ban the use of the graduated electronic decelerator (GED) on individuals with disabilities.

The GED is a device that delivers a powerful and painful shock to wearers. The GED has been condemned by the United Nations as a weapon of torture against particularly vulnerable populations. The severely painful device is primarily used at the Judge Rotenberg Center (JRC) on autistic individuals who behave in ways that are deemed inappropriate by staff at the center. Behaviors that the JRC has used GED shock to discipline include but are not limited to: hand-flapping, standing, making noise, and screaming in pain from the administered shock. The GED has been known to burn skin and is traumatic for individuals exposed to the device.

Last year, the FDA successfully implemented regulations that banned the use of the GED on individuals with disabilities with the support of over 300,000 caring individuals. However, the JRC successfully lifted the ban in a lawsuit against the FDA. The unfortunate success of the lawsuit occurred because the FDA solely banned the use of the GED for behavior modification purposes. The court ruled that the FDA did not have authority to implement the regulation because the FDA did not completely ban the device overall.

I am therefore calling on you to support autistic individuals and people with cognitive disabilities by encouraging the FDA to produce a total ban against the GED. Your support is necessary to protect the well-being of vulnerable individuals residing in the JRC and susceptible to greuling abuse.

Urge the legislature to cut the funding of the Judge Rotenberg Center.

Please include an amendment in the Keeping All Students Safe Act (KASSA) that would expand the bill’s prohibitions to include aversive interventions and pass this Act.

Thank you for your time and consideration. Please feel free to keep me informed on your decision to act on this matter.

Respectfully,
[YOUR NAME/TITLE/INSTITUTION]

Action Item 3 (Only for People in the US)

  1. Sign Original Petition to ban the GED. - most important one to sign
  2. Sign New Petition to ban the GED.
  3. Sign New Petition to close the Judge Rotenberg Center.
  4. Sign New Petition to the Massachusetts State Attorney General
  5. Sign New Petition to ban the GED.

Information on the Disabled Persons Protection Commission and reporting (twitter thread)

Action Item 4

To report suspicion of abuse, Massachusetts Abuse Reporting Numbers -

Disabled Persons Protection Commission (DPPC) Ages 18 to 59:

1-800-426-9009 or 1-888-822-0350 TTY

Executive Office of Elder Affairs (EOEA) Ages 60 and over:

1-800-922-2275

Department of Public Health (DPH) All Ages residing in Long Term Care Facilities: 1-800-462-5540

Department of Children and Families (DCF) Birth to age 17:

1-800-792-5200

Action Item 5

Infographics you can share to social media (can use the #StopTheShock hashtag as well):

GED current values from the original FDA ban report (found by @autisticats):

Graph on potential side effects/severity of shocks and potential for death (red dots = GED devices, info here):

To Learn More:

Information on JRC and the GED devices:

  • Notes that the FDA had not approved the device and they were not allowed to represent the device as approved by the FDA.
  • GED-3a and GED-4 (currently used) has never been approved by the FDA.
  • They were accidentally approved (notified as “exempt”) in 2000
  • This shows proof that they were never approved by the FDA
  • Center is paid by tax payers
  • Mostly people of color are students there
  • “You can’t shock someone for getting out of bed without permission and say it’s for aggression, it’s just not true. That is one major disagreement I have with JRC. In the behavior sheet I mentioned earlier look at the way the behaviors are categorized. Out of bed w/o permission is under the heading “Aggress1”. No, getting out of bed is NOT aggressive, and that’s all I’m going to say about this point.”
  • Says straightforwardly that the GED-4 has not been FDA approved, and they still use it on “harder students” or “more severe behaviors.”
  • “She explains that the treatment team is composed of the student’s parent, clinician (who is a PHD), opposing attorney (who represents the student/client), IEP from school district, and human rights peer review. The clinician proposes the treatment. Glenda explains the treatment plan is reviewed every 6 months. Changes do not need to be approved until the next 6 month review, but they do have to notify when there is a change.”
  • “Law against aversives: There is a law against level 3 intervention in Canton Massachusetts where JRC is located. Level 3 intervention is: pain, time out for more than 15 minutes, and use of mechanical restraints. Glenda tells us JRC can use the GED (which is a level 3 intervention because it produces pain) because of a settlement agreement made in the 1980s and upheld in the 1990s. But other organizations in Canton Massachusetts cannot use level 3 intervention. I commented to Glenda that that doesn’t sound fair.”

Information on who actually approves the Judge Rotenberg Center (from a report from 2016) -

“MS. CROOKES: Good morning. My name is Glenda Crookes, and I am the Executive Director of the Judge Rotenberg Educational Center. JRC is a special education school and treatment facility founded in 1971 for both children and adults with severe behavior disorders. We are located in Canton, Massachusetts, and have 241 students enrolled in the program. We do use an aversive conditioning device in the program and have since 1989, for 25 years, very safely and effectively. Currently, 60 of the 241 students have an aversive conditioning device as one component of their behavior plan. There are no current students under the age of 18 utilizing the device. There are many agencies responsible for the oversight of JRC. We are licensed by the Massachusetts Department of Elementary and Secondary Education as a special education school. We are an approved out-of-state provider for both New York State and Illinois. Our adults day program is licensed by the Massachusetts Department of Developmental Services, which also provides a special certification to JRC to use the aversives. Our group homes are licensed by both the Massachusetts Department of Developmental Services as well as the Massachusetts Department of Early Education and Care”

Most recent interview with Glenda Crookes who runs the facility.

Extra Credit:

The JRC uses Applied Behavioral Analysis in relation to its electric shocks.

ABA Therapy is the most common “autism therapy” in the US

but is harmful to autistic people and can cause PTSD and long-term mental health issues, such as increased suicidality.

Read about why ABA Therapy is Harmful to Autistic People Here, and what the other alternatives are.

If you have anything to add to this document, you can contact me at @AutSciPerson.