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Independent Living News & Policy from the National Council on Independent Living

Civil Rights & the ADA

NCIL Applauds FDA’s Final Ban on Electric Shock Devices

Last week, the Food and Drug Administration (FDA) finally released their final ban on the electric shock devices used to shock disabled people at the Judge Rotenberg Center. The rule was released on Wednesday and published on Friday. The rule, which will go into effect after 30 days (on April 6), will end the use of contingent shock devices to punish unwanted behavior, which JRC calls “treatment”. As a national cross-disability organization that advocates for the civil and human rights of people with disabilities, the National Council on Independent Living (NCIL) applauds this ban.

JRC, in Canton, MA, is the only facility known to use these devices. It is believed that currently nearly 50 individuals are subjected to being tortured by these devices, which includes having electrodes strapped to their bodies, 24 hours a day, in order that painful shocks can be delivered by staff armed with remote control activators. All JRC residents, the majority of whom are reported by visitors to be people of color and most of whom are from outside Massachusetts, are subjected to intense behavioral controls, and contingent shock is the most egregious of the abuses. The devices are also known to malfunction in common conditions such as the steam after a shower, and to sometimes be activated by the wrong button. After the rule goes into effect, JRC will have 6 months to transition people off the devices.

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Plastic Bans: Pitting the Well-being of the Environment Against the Lives of People with Disabilities

By Gabe Mullen, NCIL Policy Intern

“People with disabilities versus the environment” are not words you probably thought you would ever hear together in a sentence. They’re certainly not words we should want to hear in a sentence. After all, the environment is in trouble, and we should want to save it. And for people with disabilities, the world is still largely inaccessible, threatening our freedom and our ability to enjoy life, liberty, and the pursuit of happiness.

What could possibly pit these two worthy causes against one another?

Across the country, cities and counties are banning plastic straws and bags, or instituting “bag taxes”, citing the fact that such items, which don’t decompose and are typically used only once, end up in our oceans where they threaten wildlife. Currently, there is a bill containing a plastic ban in Congress, sponsored by Senator Tom Udall of New Mexico and Congressman Alan Lowenthal of New York.

Plastic straws and bags are just a convenience, proponents argue. No one really needs them. At the end of the day, the only people that really stand to lose from such bans are the corporations that make the plastics, right?

Wrong. Let’s unpack what these bans mean, starting with straws.

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The National Organizing Project Presents… A Teleconference: Passing On What We Have Learned – Preserving Our History While Envisioning a More Inclusive Future

As we approach the 30th anniversary of the signing of the Americans with Disabilities Act, we have an opportunity to reflect on the history of our movement, who helped forge the path toward equality and integration, and what work remains to be done. As we move beyond 30 years of the Americans with Disabilities Act, we raise our eyes towards building equity in our movement. Leaders who have played critical roles in mentoring disabled activists, especially lifting up multiply-marginalized disability activists, will reflect on the history of the movement and their mentorship experiences in this roundtable. Activists on the panel who are helping our movement look toward a more inclusive, more equitable future for the ADA will set out a vision for the work yet to be done.

This hour-long conversation will feature a panel of presenters highlighting their unique perspectives about where we have been and where we need to go from here.

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Organizers Forum: Resisting Anti-Blackness in Disability Spaces

The Organizers Forum can be used for us to explore how to make disability spaces and disability organizations actively anti-racist. Thank you to those who have been part of previous conversations to challenge ourselves and each other, and welcome to those who are committed to creating stronger and more just disability spaces. In honor of Black History Month, National Disability Rights Network has launched a series called Disability Rights in Black, which features a new video by incredible Black disabled people every day of the month. On Tuesday’s call, we will learn from Azza Altiraifi and Valerie Novack and talk about what we are all doing or commit to doing to resist anti-Blackness in our organizations and circles. 

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Information Alert: Supreme Court Overturns Nationwide Injunction Against the Public Charge Rule

On Monday, the Supreme Court issued a decision that overturned the nationwide injunction against the Department of Homeland Security public charge rule. Read the decision (PDF).

The nationwide injunction was preventing the rule from going into effect. The Supreme Court decision means the public charge rule can now be implemented while litigation continues.

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Action Alert: Add Your Organization As A Signatory to the Key Principles for Mental Health Platforms!

Deadline: Wednesday, December 18; 12:00 Noon Eastern.

In response to some of the terrible proposals we have seen from presidential candidates around mental health that call for increased institutionalization and forced treatment, NCIL has joined a group of national mental health and disability rights organizations to develop a set of principles on mental health to share with campaigns. We are doing this to make our priorities on these issues clear, and we hope other candidates will take our community into account before developing their proposals. After consulting with attorneys knowledgeable in this area, we have determined that this is an allowable form of advocacy for a 501(c)(3).

These principles are open for signature from national, state, and local organizations. If you would like to sign on, please email Jennifer Mathis from the Bazelon Center at with your organization’s name (as you would like it to appear) and your state. The deadline to sign on is Wednesday, December 18 at 12:00 Noon Eastern. Please feel free to share this with other groups who may be interested as well.

Marriage Equality Is Still Not a Reality: Disabled People and the Right to Marry

By Eryn Star, NCIL Summer Policy Intern

“We’re done fighting for marriage equality; we have it now, so we have to focus on other issues instead!” is something I’ve been hearing a lot in queer spaces for the past couple of years. I understand where many people are coming from; marriage is an institution that has been used as a tool of oppression against marginalized people, and the focus on marriage equality did lead to many LGBTQ+ rights issues getting pushed aside. However, that should not be used to deny that marriage equality remains an issue in the United States for disabled people. It is necessary for us to address this because it is both a healthcare and civil rights issue.

A major reason why many disabled people are unable to marry is because of SSI and Medicaid. SSI and Medicaid are needs-based and focus on current assets and income. If you are on SSI and/or Medicaid and you marry a partner not on those programs, your partner’s income and assets are taken into consideration, and so both of your incomes and assets will be used to determine your eligibility. Because the assets and income combined often becomes too high to qualify for these programs, many disabled people have lost their SSI and Medicaid benefits. As a result, some disabled people have been forced to divorce and live separately in order to keep SSI and/or Medicaid. If both partners are on SSI and/or Medicaid, they have an even higher risk of losing their benefits. Not only would their income and assets be combined, but they are also hit by a marriage penalty. Married couples are allowed to have less in assets than the partners would be allowed to have as individuals. They receive a maximum total benefit that’s significantly less than what they would receive on individual benefits, and is in fact only slightly more than one person’s individual benefits.

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NCIL Applauds Courts’ Preliminary Injunctions Against the Public Charge Rule!

The National Council on Independent Living (NCIL) is thrilled that five district courts have issued preliminary injunctions to stop the Administration’s public charge rule from going into effect. Last Friday, October 11, 2019, injunctions were issued in New York, Washington, and California, and on Sunday, Illinois and Maryland followed with two more. NCIL, along with seventeen other national disability rights groups, filed an amicus brief (PDF) in several of these cases.

The final public charge rule would have gone into effect yesterday, October 15. The public charge rule would create significant additional barriers for immigrants – and especially disabled and poor immigrants – to enter the US or become lawful permanent residents. Under the new rule, receiving certain public benefits – like Medicaid, housing assistance, SNAP, or healthcare subsidies – or having a medical condition or disability can be used to deny entry or permanent residency. Disabled and low-income immigrants are clearly targeted by this rule, and the decisions from last week and yesterday are a huge victory.

The fight against the public charge rule is not over though, and NCIL will continue our work to oppose it. We will keep you updated as things move forward and as any need for advocacy arises. In the meantime, thank you for your work on this issue already.

Read more about the public charge rule.

Sign On To a Joint Statement on Gun Violence Prevention Policy and Mental Health

NCIL has been working with a group of national disability rights and mental health organizations to push back against the rhetoric that people with psychiatric diagnoses are the cause of gun violence, and to fight against gun violence prevention proposals that discriminate against disabled people. With this rhetoric coming from many directions, and with the threat of new proposals and legislation remaining constant, it is more important than ever that we work together and speak out.

Decades of research has shown us what we already know: people with psychiatric diagnoses are no more likely to be violent than people without. And, people with psychiatric diagnoses are far more likely to be victims than perpetrators of violence. It is unacceptable to deprive a group of people their rights based solely on diagnosis and unfounded fear, which is what many – including the President – are proposing to do.

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Amicus Brief Challenging Administration’s Rescission of DACA

NCIL joined a coalition of 45 civil rights and social justice organizations, led by the Lawyers’ Committee for Civil Rights Under Law, in filing an amicus brief before the Supreme Court urging that the Department of Homeland Security’s rescission of the DACA (Deferred Action for Childhood Arrivals) program is unlawful. The brief was submitted Friday morning.

In late 2017, the Trump Administration abruptly terminated the DACA program. Legal challenges have kept the program in place, and it has now made its way to the Supreme Court, where a hearing is expected on November 12, 2019. 

You can read more information about the amicus brief in the Leadership Conference on Civil and Human Rights’ press release.