Bill to stop New York from sending residents to the JRC

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ASPartOfMe
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05 May 2022, 2:53 pm

ASAN action alert

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For years, the disability community has put in the work to close the Judge Rotenberg Center. While much of our focus has been on the national level, there is now critical state-level legislation that would affect the Judge Rotenberg Center. The New York state legislature is introducing a bill that would stop the state from sending any more people to the JRC.


Most of the JRC’s residents come from New York. If Andre's Law passes, more New York residents cannot be sent to the JRC, which is a huge and important step towards shutting down the JRC for good.

Our community can’t wait -- we must take this critical step toward ending the torturous practice of shocks as behavioral control, and towards closing the Judge Rotenberg Center. We know this fight has been a long, difficult path – but it’s not too late. Your advocacy will make sure we #StopTheShock for good. We need our New York members to call your state legislators! Please share this call to action with any resident of New York so we can make our voices heard.

Within the link, there are tools for non-New York residents to send a message to send message to the NY state legislator as well as tools for New Yorkers to call or senda message


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Mona Pereth
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06 May 2022, 4:13 am

Are you sure you posted the correct link?

The link you posted does not appear to be to any ASAN resource, but rather to a page on the Queens College website that requires password login.


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Mona Pereth
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06 May 2022, 4:19 am

Here is a link to NY State Senate Bill S8935.

If you live in NY State, find your State Senator here and find your State Assembly member here.


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ASPartOfMe
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06 May 2022, 9:26 am

Correct link I hope


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carlos55
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06 May 2022, 2:42 pm

Im sure the JRC is an unpleasant place. But if these kids are violent & destructive and their needs are too high to live at home with their parents where will they go if JRC closes?


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ASPartOfMe
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06 May 2022, 9:26 pm

carlos55 wrote:
Im sure the JRC is an unpleasant place. But if these kids are violent & destructive and their needs are too high to live at home with their parents where will they go if JRC closes?

Every other facility in America that deals with violent and destructive autistics has found ways to deal with them without shocking them with varying degrees of success and failure.

That said these people will need to be dealt with extra special caution because not only are you dealing with severe autism but PTSD, and people who have been trained to be obedient beyond reason.


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carlos55
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07 May 2022, 3:21 pm

ASPartOfMe wrote:
carlos55 wrote:
Im sure the JRC is an unpleasant place. But if these kids are violent & destructive and their needs are too high to live at home with their parents where will they go if JRC closes?

Every other facility in America that deals with violent and destructive autistics has found ways to deal with them without shocking them with varying degrees of success and failure.

That said these people will need to be dealt with extra special caution because not only are you dealing with severe autism but PTSD, and people who have been trained to be obedient beyond reason.


Wouldnt a smarter move be to just campaign to ban shocking the kids and just change the management & name rather than close down a mental health service facility that`s needed?


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07 May 2022, 4:17 pm

Agrees with above Post by Carlos. ^^^^


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ASPartOfMe
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07 May 2022, 8:28 pm

They did try. After years of lobbying, they got the Food and Drug Administration to ban the device for this use but the JRC got a court to rescind the ban.

Appeals court overturns FDA’s ban of electric shock device

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In a 2-1 decision, a federal court of appeals in Washington, DC struck down the US Food and Drug Administration’s (FDA) ban on electrical stimulation devices (ESDs) used at a single facility in Massachusetts to treat self-injurious behavior (SIB) or aggressive behavior (AB).

The US Court of Appeals for the DC Circuit, in siding with the plaintiffs, found that FDA’s ban on the devices for their particular use is not supported under statute and infringes on the practice of medicine.

FDA first proposed banning the Class II devices, also referred to as graduated electronic decelerators (GEDs), for SIB or AB in 2016 based on the recommendation of an advisory panel in 2014. In the Federal Register notice proposing the ban, FDA wrote the use of the devices to treat aggressive and self-injurious behavior poses “a substantial and unreasonable” risk to patients. FDA also said there was inconclusive evidence that the benefits of such treatment outweigh the risks.

Four years later, FDA banned the devices, which at the time were used solely by the Judge Rotenberg Educational Center (JRC) in Canton, MA to treat approximately 50 patients at the facility. The move marked only the third time the agency had banned a medical device after banning powdered gloves in 2016 and prosthetic hair fibers in 1983.

In response, the Judge Rotenberg Center and the JRC Parents and Friends Association, Inc. challenged the ban in court and separately petitioned FDA to stay the ban’s provisions calling for patient-directed transition plans for devices in use on specific patients by September 2020. FDA granted the petitions in August 2020, citing the COVID-19 public health emergency. “The stay is in the public interest and interest of justice because of the ongoing national emergency,” the agency wrote, adding that it would substantively respond to the petitions after the public health emergency ends.

In its opinion, the court looks at two statutes underpinning the arguments in the case. The first, 21 USC § 360f, grants FDA the authority to ban medical devices; the second, 21 USC § 396, prohibits FDA from regulating the practice of medicine.

In this instance, the court finds that FDA’s authority to ban devices does not extend to banning specific uses of legally marketed devices. “The statute states that the FDA may make ‘such device a banned device,’ and the natural reading of that language suggests a device either is banned or it is not. It speaks of no authority to place a device in an intermediate state of ‘banned in some uses,’” the court writes.

The court also notes that section 396 “expressly denies the FDA authority to construe any part of the Food, Drug, and Cosmetic Act, including its authority to ban devices under section 360f, to permit FDA to,” limit or interfere with medical practitioners’ authority to prescribe or administer legally marketed devices.

Here, the court points out that the devices are still “legally marketed” because it is “legally marketed if it is lawful for a manufacturer to sell the device or a practitioner to prescribe or administer it,” citing other uses for ESDs, such as quitting smoking. “The statute does not suggest … a limitation that the device must be marketed for the particular use for which the practitioner wants to utilize the device,” the court said, arguing that such an interpretation would “eviscerate” protection of off-label use.

The court adds that had Congress intended for FDA’s banning authority to escape constraint by section 396, it could have done so via legislation.

“No one disputes that section 360f permits the FDA to ban a device completely. The FDA could even decline to approve a device in the first instance. The problem is that once the FDA approves a device and then tries to ban it for specific uses, it defies the limitation that section 396 imposes,” the court concludes.

The court also raises Federalism issues, noting that states have traditionally regulated the practice of medicine and citing Massachusetts’ “very active role in regulating the [Judge Rotenberg] Center’s use of electrical stimulation devices.”

In his dissenting opinion, Chief Judge Srinivasan argues that, “It is eminently reasonable—and entirely consistent with the statute’s purposes—to conclude that the FDA may impose a more targeted ban focused solely on a device’s unreasonably dangerous intended uses.”


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Mona Pereth
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08 May 2022, 3:33 am

carlos55 wrote:
Wouldnt a smarter move be to just campaign to ban shocking the kids and just change the management & name rather than close down a mental health service facility that`s needed?

The proposed bill would not close the JRC down directly. It would just refuse to pay for treatment there as long as they continue to use electric shocks (or other physical torture) as punishment.

Because most of the JRC's clients are from New York State, this might, perhaps, effectively pressure the JRC into not using the shock devices anymore, so they could become eligible for NY State funding again.

Previous attempts to get the shock devices themselves banned, at the federal level, have not been successful.

(Personally I don't have very high hopes for this bill getting passed at the present time. The JRC, as far as I can tell, seems to have lots of powerful allies who will likely lobby against the bill.)


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08 May 2022, 9:47 am

This is insanity …the JRC. Needs a healthy equivalent..The fact that JRC got away with overturning this ban
Show to what degree psychopathy is prevailing in that State .


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ASPartOfMe
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09 May 2022, 12:19 am

Mona Pereth wrote:
(Personally I don't have very high hopes for this bill getting passed at the present time. The JRC, as far as I can tell, seems to have lots of powerful allies who will likely lobby against the bill.)

Even if it does get passed the JRC will find a way to have the bill nullified.

Jakki wrote:
This is insanity …the JRC. Needs a healthy equivalent..The fact that JRC got away with overturning this ban
Show to what degree psychopathy is prevailing in that State .

It was a Federal Court that overturned the ban.

The inability to get this situation changed despite decades of trying is the biggest black mark against the disability rights movement.


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Last edited by Cornflake on 09 May 2022, 5:51 am, edited 1 time in total.: Fixed broken quote