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

Take Action Over the Recess!

Members of Congress are back home during various times in August, and now is a critical time to talk with them about the Disability Integration Act (DIA) and other key priorities! Senators will be home this week for a shortened recess, but they’ll be back in DC by August 13. Representatives will be in their home districts for the whole month of August and returning to DC on September 4. Take advantage of the time they’re home to meet with them about the things that are most important to you!

Disability Integration Act: If your Senators or Representative have still not signed on to the Disability Integration Act (S. 910 and H.R. 2472), urge them to become a cosponsor! Tell them how important this bill is to their disabled constituents. Explain to them that this is a bipartisan bill that would help disabled people stay in our homes and communities. If they want their disabled constituents to be a part of their communities, what are they waiting for? We need ALL our Members of Congress to support the DIA! If you get in touch with your Senators or Representative about DIA, please email an update to!

NCIL logo - National Council on Independent LivingEMPOWER Care Act: Make sure you also talk with your Senators and Representatives about the Ensuring Medicaid Provides Opportunities for Widespread Equity, Resources, and (EMPOWER) Care Act (S. 2227 and H.R. 5306)! This bipartisan bill would reauthorize the Money Follows the Person (MFP) demonstration program, which has freed over 75,000 disabled people from institutions, but expired in 2016. Urge your Members of Congress to support this important bill!

Other priorities: Make sure to talk with your Members of Congress about other issues that are priorities to you and your community. Talk with them about how critical it is to increase funding for the Independent Living Program. Tell them how much their disabled constituents rely on Medicaid and the Affordable Care Act. Talk about the lack of accessible, affordable housing or transportation in your communities. Use this opportunity to make sure your Members of Congress are hearing about the issues that matter to their disabled constituents! You can feel free to use the NCIL Legislative & Priorities Booklet to help support your efforts:

As we’ve proven time and again, the disability community has the power to make things happen. Use this opportunity to educate your Senators and Representatives on the issues that are important to all of us! Every single meeting with your Members of Congress is one more opportunity to have our voices heard and our efforts supported. Take action today!

MEDIA ADVISORY: Disability Rights Advocates to March on Washington Tuesday, July 24

For Immediate Release

July 22, 2018

Contact: Eleanor Canter, NCIL Communications Coordinator – 231-755-5063 or

This Media Advisory is also available in PDF, Word, and plain text.

Washington, DC — On Tuesday, July 24, approximately 1000 people with disabilities, advocates, and allies from across the nation will march to the US Capitol in support of disability rights. Participants will meet at 11th and G Streets NW at 9:30 a.m. and the 1.2 mile March to the Capitol will begin promptly at 10:00 a.m. All members of the public and press are encouraged to attend.

Approximately 1000 people march to the US Capitol carrying signs and chanting in support of Independent Living and disability rights in 2017

Approximately 1000 people march to the US Capitol carrying signs and chanting in support of Independent Living and disability rights in 2017

This event will precede the 28th Anniversary of the Anniversary of the Americans with Disabilities Act (ADA), which was signed by President George H.W. Bush on July 26, 1990.

The March route will end at the West Front Lawn of the US Capitol, where participants will gather for an empowering Rally for Disability Rights, which will feature Senators, Representatives, and Independent Living and disability rights advocates. Advocates will then make their way to the US Capitol Building to meet with their elected Members of Congress in order to promote NCIL’s Legislative and Advocacy Priorities, which are developed bi-annually by the organization’s membership.

Some of the priorities advocates will be addressing include funding for America’s Independent Living Program, protecting the ADA from Congressional attack; protecting Medicaid and Home and Community Based Services; and promoting the Disability Integration Act.

Confirmed Rally Speakers include: Senator Bob Casey (D-PA); Senator Duckworth (D-IL); Representative Gene Green (D-TX); Representative Colleen Hanabusa (D-HI); Senator Maggie Hassan (D-NH); Representative Jared Huffman (D-CA); Representative Joe Kennedy (D-MA); Representative Ro Khanna (D-CA); Representative Jim Langevin (D-RI); Representative Seth Moulton (D-MA); House Minority Leader Pelosi (D-CA); Representative Stacey Plaskett (D-VI); Senate Minority Leader Schumer (D-NY); Representative Glenn “GT” Thompson (R-PA); Representative Dina Titus (D-NV); Representative Juan Vargas (D-CA); Senator Van Hollen (D-MD); Representative Debbie Wasserman Schultz (D-FL); and Representative Sheila Jackson Lee (D-TX).

The March and Rally for Disability Rights is being organized by the National Council on Independent Living as part of its 2018 Annual Conference on Independent Living, MOBILIZE: Resistance through Action, which will take place July 23-26 at the Grand Hyatt Washington.

The National Council on Independent Living (NCIL) is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands, including: individuals with disabilities, Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.

NCIL Statement of Principles on Chronic Pain and Opioids

As a response to people with chronic pain experiencing increasing barriers to adequate pain treatment, the National Council on Independent Living created the Chronic Pain / Opioids Task Force. The goal of the Task Force is to work to ensure the voices of people with chronic pain and other disabilities are part of the ongoing national discussion, and to develop a national strategy around this important issue. The Chronic Pain / Opioids Task Force has created the following Statement of Principles to guide NCIL’s work, and we hope our members will be able to use this to guide their advocacy on this issue as well.

The NCIL Statement of Principles on Chronic Pain and Opioids is available in PDFWord, and plain text.

Cancelled: SPIL Development – Preparing Your SPIL and Recommendations from the SPIL Revision Committee

SILC-NET Presents… A National Teleconference & Webinar:

SPIL Development: Preparing Your SPIL and Recommendations from the SPIL Revision Committee

August 29, 2018; 3:00 – 4:30 p.m. Eastern

** We regret to announce that this training has been cancelled.  ACL is planning to provide new information on the forthcoming SPIL instrument and instructions.  They have asked us to withhold trainings on SPIL development and the new SPIL instrument until they release that information. While we believe that this is an important time for trainings on SPIL development, we have agreed to cancel this event until ACL has an opportunity to communicate with the SILCs about plans for next year’s SPIL.  Registration fees will be automatically re-funded.  Registrants do not need to take further action to cancel or receive a refund.  We regret any inconvenience and thank you for your understanding.

IL-NET Logo - CIL-NET + SILC-NETState Plans for Independent Living (SPILs) are due next June, less than a year away. Your plan is likely well underway, but there is still time to improve your process. Join us on August 29 to learn the latest on the SPIL, including what has changed since the Workforce Innovation and Opportunities Act (WIOA) passed, how to get the most out of your SPIL, and the recommendations of the SPIL Revision Committee – a group of SILC and IL advocates that advised the Administration for Community Living (ACL) on the forthcoming revisions to the SPIL instrument and instructions.

Don’t miss this opportunity to get the latest information on SPILs. Sign up today!

Registration Fee: $75.00. Fee is per site (connection) and does not apply per participant; registrants are encouraged to gather as many individuals as desired to participate by telephone.  [Read more…]

Rooted in Rights Storyteller Carrie Wade Talks Running for Office with a Disability

This week, Rooted in Rights released a video by Storyteller Carrie Wade entitled “Running Out,” which looks at representation in public office and considers the challenges and opportunities of running for office as an LGBTQ woman with a disability. Carrie talked with both Sarah Blahovec, NCIL’s Disability Vote Organizer, former candidate Amy Biviano, and Reggie Greer, who is the Director of Constituent Engagement at the Victory Fund, which trains and supports openly LGBTQ individuals to seek elected office.   [Read more…]

NCIL Conference Attendees Invited to Kennedy Center ADA Anniversary Performance featuring Mandy Harvey

On July 26, 2018 there will be a free 6:00 p.m. performance at the Kennedy Center’s Millennium Stage featuring Mandy Harvey, a deaf singer / songwriter, to celebrate the ADA’s 28th Anniversary.

Mandy HarveyThe Kennedy Center expects this to be a popular show. Seating will be on a first-come, first-seated basis, but everything is wheelchair accessible and the show will be captioned, signed, and audio described. No tickets or reservations are necessary.

A vocal music education major at Colorado State University, Harvey lost her residual hearing in 2006–2007 at age 18 due to a connective tissue disorder, and left the program. She pursued several career options, including education, but returned to music in 2008. Mandy’s music attracts the attention of those around the world.  [Read more…]

NCIL and Centene Partner to Increase Provider Accessibility for People with Disabilities

The National Council on Independent Living (NCIL) is partnering with Centene on an initiative to increase the accessibility of provider medical offices and services for people with disabilities. The Provider Accessibility Initiative (PAI) will kick off with the “Barrier Removal Fund” (BRF) in three pilot states, Illinois, Texas, and Ohio, as well as educational and compliance components that will be implemented in all Centene markets nationwide.

NCIL logo - National Council on Independent LivingThe goal of the PAI is to improve member access and health outcomes by increasing the percentage of practitioner locations and services in Centene’s network that meet minimum federal and state disability access standards.

“NCIL is proud to have the opportunity to leverage the wealth of knowledge and expertise of Centers for Independent Living to increase accessibility of medical offices and services. We look forward to the day that all Americans can enjoy equal access to this fundamental civil right,” said Kelly Buckland, NCIL Executive Director.

“Studies have shown that Medicaid and Medicare beneficiaries with disabilities receive less preventive care due to inaccessible provider exam rooms and/or diagnostic equipment. Through this partnership, Centene and NCIL aim to solve a vital national problem and key social determinant of health for people with disabilities and their companions,” said Dr. Ken Yamaguchi, Executive Vice President and Chief Medical Officer for Centene.   [Read more…]

NCIL Condemns Judge’s Decision to Allow Electric Shocks to Continue

The National Council on Independent Living (NCIL) is appalled and outraged by the recent decision of a Massachusetts judge to allow the Judge Rotenberg Center (JRC) to continue administering electric shocks to disabled individuals as behavior ‘treatment’. We stand with countless other disability rights organizations and advocates in opposing this cruel ruling.

NCIL logo - National Council on Independent LivingDespite opposition from disability rights organizations, previous residents, parents and advocates, JRC continues to use electric shock devices as behavioral treatment on disabled individuals. Even in the face of decades of evidence showing these devices to be both dangerous and cruel, and even after the United Nations (UN) condemned the use of these devices as torture, JRC continues to be the one and only institution in the country to continue this practice.

In Judge Field’s decision, she wrote that Massachusetts officials did not prove that the practice fails to conform to “the accepted standard of care for treating individuals with intellectual and developmental disabilities.” Kelly Buckland, Executive Director of NCIL, said of the ruling: “The judge’s decision is appalling. There is no question that the use of these devices causes lasting harm to disabled people. For Judge Field to so blatantly disregard the safety and well-being of JRC residents is completely despicable.”  [Read more…]

Annual Conference Speakers Confirmed!

Mobilize - Resistance through Action: 2018 Annual Conference on Independent Living. Graphic features an arrow striking a heart over the letters "IL" and a target that replaces the "o" in "Mobilize"Keynote Speaker: Rebecca Vallas

We are happy to announce the confirmation of Keynote Speaker Rebecca Vallas, who will deliver an address during the Opening Plenary, which takes place 9:00-10:00 a.m. on Monday, July 23. This event will kick off a week of movement-building and mobilization. Read Rebecca’s biography.

ILA Update

The 2018 Annual Conference on Independent Living will feature an ILA Update on Thursday, July 26, 4:15-5:00 p.m. Administration for Community Living (ACL) and Independent Living Administration (ILA) leadership will provide an update on NCIL’s priorities and concerns for oversight of the Independent Living Program, as well as other current affairs at ACL and ILA. An opportunity for questions and answers will be provided.

Confirmed Rally Speakers:

  • Senator Bob Casey
  • Representative Gene Green
  • Representative Colleen Hanabusa
  • Senator Maggie Hassan
  • Representative Jared Huffman
  • Representative Joe Kennedy
  • Representative Ro Khanna
  • Representative Jim Langevin
  • Representative Seth Moulton
  • House Minority Leader Nancy Pelosi
  • Senate Minority Leader Chuck Schumer
  • Representative Glenn ‘GT’ Thompson
  • Representative Dina Titus
  • Representative Juan Vargas
  • Senator Chris Van Hollen

Join Us!

Online registration for the 2018 Annual Conference on Independent Living closes at midnight on Friday, July 13. Onsite registration is also available. Please note that onsite registration fees differ from standard registration fees and plan accordingly. Plan to join us for the March for Disability Rights and Rally on Capitol Hill – no registration is required!

Center for American Progress Releases Report “Increasing Voter Participation in America”

On July 11th, the Center for American (CAP) released a comprehensive report regarding voting participation in America, the conditions that are contributing to low voter turnout, and the tools and initiatives states can use to increase voter participation. This report looks recognizes the barriers and conditions that exist for many populations including the disability community, communities of color, young people, low-income Americans, and formerly incarcerated persons.   [Read more…]