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

NCIL Update on COVID-19

As many of you know, NCIL’s staff is operating under a mandatory remote work policy through at least the end of March. Current guidance from the Centers for Disease Control (CDC), World Health Organization (WHO), and other public health experts make it seem likely this is policy will be extended into April. NCIL staff is fully equipped for telework and our work will continue unabated. There are, however, a few things we want to highlight during our time away from our physical office.

  • Items mailed to NCIL’s office will not be received right away. While we have picked up our mail this week, items received in the next few days and weeks may not be received or processed right away.
  • We encourage everyone to use email as much as possible during this situation, especially related to items you may normally mail or fax to us. A list of NCIL staff email addresses is available on our website.
  • Call forwarding is in place and you can still call our office line to reach staff. Follow the prompts in the automated system to reach the staff person you want to talk to.
  • We are closely monitoring the situation with COVID-19 and continuing our work on all of NCIL’s projects, events, and policy priorities.

We will continue to keep you updated with more information as it is available. In the meantime, we have created a web page to collect information, resources, and opportunities regarding COVID-19. View it at

IL-NET Presents… A National Webinar: Operating Independent Living Programs in the Face of Coronavirus – A Q&A Session for CILs and SILCs

Friday, March 20, 2020; 3:00 – 4:30 p.m. Eastern

Register online

IMPORTANT UPDATE: Registration has re-opened for this event. We had reached our maximum capacity, but we have worked with our webinar provider to increase our capacity and can now accept additional participants.  Registration will close at Noon Eastern on Friday, March 20. 

The IL-NET National Training & Technical Assistance Center is offering a Q&A session with a panel of peers and experts, including public health experts, Center for Independent Living (CIL) and Statewide Independent Living Council (SILC) Directors from communities impacted by Coronavirus / COVID-19, and experts in emergency preparedness for people with disabilities.

We all have questions related to the Coronavirus, but none of the media response or broader expert guidance details how community-based, disability-rights groups like CILs and SILCs should respond. Our panel of peers and experts will share their guidance and answer your questions about operating Independent Living programs and providing services during the epidemic.

You won’t want to miss this important webinar. Sign-up Today!

Registration: This event is free-of-charge. Registration must be completed by 12:00 Noon Eastern on March 20, 2020.

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An Update on COVID-19

As the number of COVID-19 cases continues to increase, NCIL’s primary concern has been the health and safety of our community. NCIL has been closely following the situation and actively advocating for policy responses that support the specific needs of the disability community.

We recognize that we have a duty to prepare and respond to the COVID-19 outbreak. We want Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs) to have the tools and guidance they need to stay safe and continue to meet the needs of consumers in their communities. We want members of the disability community across the country to have access to information, resources, and services to stay healthy and safe. And we want our local, state, and federal governments to center the needs of the people most at risk for serious illness, including disabled / chronically ill people, older adults, people living in institutional settings, people experiencing homelessness, and people who are not given access to critical information about the COVID-19 outbreak. To that end, NCIL has taken the following steps:

  • We have instituted a mandatory remote work policy through at least the end of March;
  • We have requested guidance from the Independent Living Administration (ILA) for CILs and SILCs about continued operations and staffing, which they have assured us is forthcoming;
  • We are exploring a contingency plan for our Annual Conference in July, should that become necessary;
  • We are working closely with partners in and out of the disability community to propose, analyze, and fight for policy responses to address the needs of people with disabilities during this outbreak; and
  • We are closely following legislative, departmental, and other guidance, information, and resources that are released.

We also note that in communities across the country, there have been increasing incidents targeting the Asian American community. Asian Americans are being discriminated against and attacked, and Asian American businesses are seeing a significant decline in customers as a result of unfounded fear and discrimination. NCIL stands in solidarity with Asian and Asian American communities and condemns the racism and xenophobia they are facing. NCIL has joined over 100 other organizations in signing on to a letter to Congressional leadership asking that they call for unity and denounce the racism targeting Asian Americans and Pacific Islanders in the wake of COVID-19.

We will continue to keep you updated with more information as it is available. In the meantime, we have created a web page to collect information, resources, and opportunities regarding COVID-19. View it at

Take Action to Save Money Follows the Person!

Money Follows the Person (MFP) has freed over 91,000 disabled people from institutions. MFP was enacted in 2005 with strong bipartisan support, and it’s one of the longest running, most successful Medicaid demonstrations. Since it started, 44 states have participated and worked to improve access to home and community based services (HCBS).

Funding for MFP will expire May 22, 2020. Without action now, states will continue to stop transitions and people will be stuck in institutions. Last year, Congress introduced bipartisan legislation to permanently reauthorize MFP. Permanent reauthorization and funding is critical to ensure sustainability of the program, but time is running out! And, as we have said before, now that Centers for Independent Living (CILs) have been established as a national network required to conduct transition services, NCIL would like to see a permanent solution that incorporates the CIL network into the bill language.

Take Action! 

Call your Representative and Senators and tell them to permanently reauthorize MFP! See a sample script.

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Apply for NCIL’s 2020 Summer Policy Internship Program by Wednesday, April 1!

Each semester, the National Council on Independent Living (NCIL) hosts up to 2 internship positions at our office in Washington, DC. The Policy Internship Program provides real Washington policy experience to participants at a highly respected national organization. Interns gain valuable experience in the nation’s capital and build skills necessary to be ideal candidates for positions at NCIL, CILs, and other advocacy organizations around the country.

The NCIL Policy Internship Program is open to students and individuals pursuing a career in a field relevant to NCIL interests, particularly Independent Living and disability advocacy. Candidates must have a strong interest in disability rights and basic knowledge of the legislative process. Although not a requirement, preference shall be given to individuals with disabilities. The program lasts approximately 12 weeks, and interns are required to work at least 10-15 hours each week.

For more information about the NCIL Policy Internship program, visit To apply, please email a cover letter, resume, and one letter of recommendation to Lindsay Baran at To be considered for the summer internship program, your application must be received by Wednesday, April 1, 2020.

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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Action Alert: Oppose the Proposed Independent Living Changes in the President’s Budget

Last week we sent out an information alert with information about cuts and harmful proposed changes to the Independent Living (IL) Program in the President’s 2021 Budget.

As a reminder, the budget includes a $7.5 million cut to Part B funding. It also includes a $5 million increase to Part C funding, but those funds are reserved for competitive employment grants.

Importantly, there are also three legislative proposals related to the IL Program:

  • The first proposal would allow funds currently appropriated for training and technical assistance (T/TA) to be used for program evaluation and performance measurement.
  • The second proposal would remove the requirement for any reviews of Centers for Independent Living (CILs) to be conducted onsite.
  • The final proposal would allow the Administration for Community Living (ACL) to stop contracting out for T/TA.

All three proposals are bad ideas and would all harm the IL Program. Regarding the first proposal, the Workforce Innovation and Opportunity Act (WIOA) states that the Secretary of the Department of Health and Human Services (HHS) shall ensure the Independent Living Administration (ILA) has sufficient resources to provide technical assistance, support, and oversight. If ILA leadership does not believe they have sufficient funds to carry out their responsibilities, they should be asking for more funding rather than reallocating funding from one important duty to another.

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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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SPIL Instrument and Instructions Posted to Federal Register: Submit Comments by March 9, 2020

ACL has announced that the new State Plan for Independent Living (SPIL) instrument and instructions were published in the Federal Register. The document is available for comments through March 9, 2020. You can find the instrument and instructions at

After the comment period has closed, ACL will review the comments and release the final SPIL instrument and instructions. The new instrument must be used to complete the FY 2021 – FY 2023 SPIL. The SPIL must be submitted to ACL for review and approval by June 30, 2020.

Comments can be submitted:

  • By email to, Attn: OMB Desk Officer for ACL;
  • By fax for (202) 395-5806, Attn: OMB Desk Officer for ACL; or
  • By mail to the Office of Information and Regulatory Affairs, OMB, New Executive Office Bldg., 725 17th St. NW, Rm. 10235, Washington, DC 20503, Attn: OMB Desk Officer for ACL.

You can read the full email ACL sent to the network on Friday below. It has additional information and instructions.

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