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

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.

NCIL Statement of Principles on Chronic Pain and Opioids

Georgia Disability Advocates Respond to Polling Place Closures in Randolph County

This week, several Georgia disability advocates responded to reports that seven of nine polling places would be closed in rural Randolph County, Georgia due to polling places allegedly not being in compliance with the Americans with Disabilities Act. Randolph County has a population of nearly 8,000 and the precincts being discussed serve populations of voters that are over 50 percent Black, and these sudden closures have triggered concerns by many groups that the ADA is being misused and that these closures will disenfranchise voters of color. Many voters would reportedly have to walk miles to get to their new polling place, and there is no public transportation system in Randolph County.  [Read more…]

Disability & Intersectionality Summit (DIS) Tickets Now Available

The Disability & Intersectionality Summit (DIS) is a biennial one-day conference that centers the experiences and knowledge of multiply marginalized disabled people such as, queer disabled people of color, undocumented transgender disabled people, or formerly incarcerated disabled people among others. This conference serves as a platform to highlight the multiple oppressions that shape the lived experiences of disabled individuals, as told by disabled people, in a setting organized by disabled activists. DIS aims to create dialogue on how our society must address systemic oppressions using an intersectional approach.  [Read more…]

Applications for the 2019 Obama Foundation Fellowship Are Now Open! 

The Obama Foundation Fellowship is a two-year, non-residential program that offers hands-on training, resources, and leadership development to help Fellows scale the impact of their work. Fellows participate in four multi-day gatherings where they collaborate with each other, connect with potential partners, and collectively push their work forward. Throughout the program, each Fellow pursues a personalized plan to leverage the Fellowship experience to take their work to the next level.

A new class of 20 civic innovators is being selected from around the world – transformational leaders who have demonstrated a meaningful impact and are poised to use the two-year Fellowship program to take their work to the next level. The Obama Foundation Fellows are a diverse set of leaders who bring a community-centered approach to science, criminal justice, healthcare, education, the arts, and more. Together they model the powerful truth that each of us has a role to play in civic life.  [Read more…]

CIL-NET & SILC-NET Present… A National Teleconference & Webinar: Expanding Housing Options in Your Community

This webinar is part of Our Homes: IL-NET’s series of trainings and resources on accessible, affordable, integrated housing for CILs & SILCs.

September 20, 2018; 3:00 – 4:30 p.m. Eastern

Register online or by using the printable registration form (PDF)

IL-NET Logo - CIL-NET + SILC-NETHousing is such a persistent barrier to independence for so many people with disabilities. It often seems that no matter what we do to “find” housing, it just is not enough. Join us this September as we explore how Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs) can be involved in expanding housing options. We will share the policies that impact housing choice, identify funding sources for housing, and suggest collaboration strategies and partners that could lead to new housing opportunities in your community.

This is the first of a series of trainings and resources that IL-NET will be offering on accessible, affordable, integrated housing. Don’t miss this kick-off event!

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…]

Wrap Up: NCIL 2018 Annual Conference on Independent Living

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"

This Annual Conference Wrap Up is also available in Word.

Contents:


Introduction and Evaluations

NCIL’s 2018 Annual Conference on Independent Living was an amazing experience. Over 1,011 people joined us from all over the US, as well as a large contingent from Japan. We want to thank each and every one of you who devoted the time, money, and energy to join us in Washington! Your participation makes the NCIL Conference what it is – the world’s largest Independent Living event and a force to be reckoned with.

NCIL is always a special event – unlike any other conference – but this year’s conference was especially unique. This year’s theme, Mobilize: Resistance through Action, was more than just a catchy title. From day one, we focused on preparing NCIL’s members to take action at the conference and back home. NCIL’s pre-conference sessions, Resistance through Direct Action: How IL and ADAPT Work Together and Integrating Disability Into Emergency Management: A Blueprint to Saving Lives in the Community, were action-oriented and very well presented. The opening plenary featured a rousing speech from Rebecca Vallas from Center for American Progress, who shared her vision for collaboration and action from all oppressed people, to demand their civil and human rights.

NCIL’s 2018 March, Rally, and Day on the Hill, was as lively as ever. The incessant rain didn’t deter hundreds of people with disabilities from marching in the streets and taking their concerns to Congress. Speaking of Congress, we had such a huge turnout at our rally that we had Members of Congress lined up behind the stage to address NCIL members. See below for the details on this year’s Rally – it was one for the books.

We’re proud to announce that we had another huge group of Youth Scholars and young adults participate in this year’s conference. We want to thank all of our Youth Scholars, young participants, and youth scholarship sponsors for investing in NCIL and young advocates. This work has changed the face of NCIL and we have to make sure that it continues.

We were also so excited to have the Laura Flanders show with us this year. The Laura Flanders Show is a popular internet television show focused on social activists, artists, entrepreneurs and other innovative individuals that refuse to wait to make change in the world. “Since 2008, The Laura Flanders Show has reached 3.1 million viewers on YouTube (over 150,000 people every month). The program is syndicated in the US on KCET/LINKtv and Free Speech TV for a combined reach of some 74 million homes, and internationally, in English and Spanish on the pan-Latin American network teleSUR, reaching an additional 180 million homes around the world.” – from www.lauraflanders.org. Laura Flanders was on hand to document the NCIL Conference and interview everyone from NCIL leaders to first time attendees to gather their input on NCIL and the Independent Living Movement. The Laura Flanders show on the NCIL Conference will be available this fall. Stay tuned to NCIL for further details on its release.

There are so many more highlights and details of the conference in the wrap-up. We hope you’ll take the time to read it and look through the photos. If you attended the conference, please take a few moments to tell us about your experience.


Photos Now Available!

We are very happy to announce that all 1,847 pictures from NCIL’s 2018 Annual Conference on Independent Living are now available on Flickr. We apologize that we do not have the capacity or knowledge to caption every picture. If you see a picture of yourself or others you know, please caption it for the benefit of all. This year, we’ve created an album of select (captioned) photos that capture the overall feel of the 2018 Annual Conference. If you would like a specific photo added to this collection, please caption the photo in the comments or email eleanor@ncil.org with the link and a description. You can comment on photos using a Flickr / Yahoo account. Special thanks to Michael Clegg for his amazing photos and, as always, thanks to our members, who made these photographs what they are: the story of our people gathering in our nation’s Capital to bring about equality and freedom for people with disabilities!


NCIL March, Rally, and Hill Visits

Yet again, this year’s March and Rally was one of the biggest we’ve ever seen! Well over 1,000 NCIL members from across the country along with local disability rights advocates marched through the streets of DC making noise, holding signs, and creating a disturbance in the streets in the name of disability rights! The MCI D45 CRT LE Commuter Coach served as the “chase vehicle” for the March and offered assistance to anyone needing it as we made our way to the Capitol.

After arriving at the US Capitol, Rally participants listened to remarks from over a dozen Members of Congress, including:

  • Senator Bob Casey (PA)
  • Senator Tammy Duckworth (IL)
  • Representative Gene Green (TX)
  • Senator Maggie Hassan (NH)
  • Representative Joe Kennedy (MA)
  • Representative Jim Langevin (RI)
  • House Minority Leader Nancy Pelosi (CA)
  • Senate Minority Leader Chuck Schumer (NY)
  • Representative Darren Soto (FL)
  • Representative Dina Titus (NV)
  • Senator Chris Van Hollen (MD)
  • Representative Juan Vargas (CA)
  • Representative Debbie Wasserman Schulz (FL)

Our Rally speakers talked about many of the issues that are important to our community, including protecting Medicaid, preserving access to healthcare, employment rights, the Americans with Disabilities Act, and of course community integration and the Disability Integration Act. Members took the mic and pledged their support for disability rights and the Independent Living community – and three Members even pledged to cosponsor the Disability Integration Act on the stage!

The Independent Living community is facing a lot of threats right now, and the March and Rally was a meaningful opportunity for us to have our voices heard and listen to Members of Congress who want to have our backs. This year’s event was incredibly successful, and it reinforced how strong (and loud) we are together!

Immediately after the Rally, NCIL members stormed the Hill to meet with their elected officials and talk about the key issues we’re fighting for. NCIL members secured even more commitments from new DIA cosponsors, and talked about other key priority issues important to their Members’ disabled constituents and the entire IL community.

The March and Rally and Hill Visits are an exciting and important part of the Annual NCIL Conference, and this year was as successful as ever! Thank you to everyone who made this day a powerful and effective event!


Legislative & Advocacy Updates

NCIL and ADAPT vs. ACCSES

What better way to learn the skills of mobilizing and resistance than staging a direct action protest?

Wednesday morning, a group of approximately 50 advocates left the conference for the Capitol, where ACCSES was holding a briefing on H.R. 5658, the “Workplace Choice and Flexibility for Individuals with Disabilities Act”. ACCSES is an association of sheltered workshops – businesses that make money by segregating and often paying subminimum wages to employees with disabilities. H.R. 5658 is not about choice, nor flexibility. Instead, it would lead to more limited options and more segregation by redefining competitive, integrated employment to include segregated settings. This bill would allow sheltered workshops to continue to keep disabled people in isolated, segregated settings, working for mere pennies while they profit off of our labor – all at taxpayer expense.

We will not stand for this! Advocates disrupted the hearing with chants of “Segregation is not community integration!” We demanded real, competitive, integrated employment. Twenty four people were arrested as the Congressional briefing was completely shut down.

Disability Integration Act (DIA)

Last year, our community rallied around preventing cuts to Medicaid and protecting the Affordable Care Act (ACA). This year, advancing the Disability Integration Act was a major rallying point, and did we ever rally! We started the week off right.

This year’s theme, Mobilize: Resistance through Action, created a perfect opportunity for NCIL to highlight a new grant project: the National Organizing Project (NOP), a collaboration between NCIL and ADAPT funded by the Ford Foundation. The NOP aims to advance direct action in support of disability rights and community living. An entire half of our afternoon pre-conference was dedicated to “Resistance through Direct Action – How IL and ADAPT Work Together”. The session filled the room with folks who were fired up and ready to take further action in support of both organizations and our partnership.

After our pre-conference session on how CILs can support ADAPT in direct action, we learned about “Organizing and Action to Advance the Disability Integration Act”. We had another packed room with eager participation from the audience.

Next up was our 1,000+ person March and Rally at the Capitol on Tuesday, where 3 of our Congressional speakers – with some prodding from advocates – announced their cosponsorship of the DIA from the podium! Another legislator pledged to get as many others to sign on as she could.

Fired up from these successes, advocates secured pledges of cosponsorship all afternoon as they visited their legislators. One visit brilliantly exemplified our theme of Mobilize: Resistance through Action as two ADAPTers secured another cosponsor by refusing to leave before the Senator signed on – which happened very quickly!

DIA Art and Essay Contests

NCIL was thrilled to have the winners of our DIA Art and Essay Contests join us for parts of this year’s conference. The winning writers, Daniel Anderson and Sam Anderson, and the winning artists, Bridget Gabriel and Eli-Robles-Cranston, each received awards during the Annual Awards Luncheon for submitting entries that captured the spirit of community integration and thoughtfully described how the DIA will improve the lives of millions of people with disabilities throughout the US. We were honored to have such passionate young people at the conference to meet with other IL advocates and to talk about how important the DIA is for young disabled advocates all around the country! Additionally, all of the artwork submitted to NCIL was turned into wearable buttons that people wore proudly throughout the conference.

Centene Endorses the DIA

An exciting surprise came Monday morning when the Centene Corporation announced that they formally support the Disability Integration Act, officially becoming the first health insurance company to do so! To wall-shaking applause and chants of “free our people” and “DIA today”, Centene joined forces with their disabled stakeholders to ensure that we can live without fear of unnecessary institutionalization. Kudos to the many advocates within Centene Corp, ADAPT, and NCIL who worked hard to make this a reality, thereby also making our right to freedom that much closer to being realized!


Annual Council Meeting

NCIL’s primary business at our 2018 Annual Council Meeting was to elect new members to the Governing Board. The agenda for this year included elections for the following positions: Vice-President, Secretary, Diversity Chairperson, and three new Members at-Large.

  • Sarah Launderville was re-elected as Vice-President. Sarah is the Executive Director of the Vermont Center for Independent Living in Montpelier, Vermont, as well as Co-Chair of NCIL’s Women’s Caucus.
  • Lou Ann Kibbee was re-elected as Secretary. Lou Ann, a NCIL Past-President, is the Independent Living Program Manager for SKIL in Hays, Kansas.
  • Jessica Jimenez was elected as Diversity Chairperson. Jessica is Co-Chair of NCIL’s Women’s Caucus, as well as the Systems Change Advocate at the Disability Community Resource Center in Los Angeles, California.

There were three new Members at-Large positions available. These are the new Members at-Large:

  • Brian Peters (re-elected) is Co-Chair of NCIL’s Housing Subcommittee, as well as the Community Access & Policy Specialist with IndependenceFirst, the Center for Independent Living in Milwaukee, Wisconsin.
  • Kim Gibson (elected) is the Executive Director of disABILITY Link, the Center for Independent Living of metro Atlanta.
  • Doug Toelle (re-elected) is the Advocacy Director of Access Alaska in Fairbanks, Alaska.

The Youth at-Large member is elected ahead of the conference by NCIL’s youth members and the results were announced at the Annual Meeting. Eiryn Griest-Schwartzman, a student and advocate from Columbia, Maryland, was elected to serve as the Youth at-Large member.

Regional Representatives rotate elections every other year, with even-numbered regions elected in even-numbered years and odd-numbered regions elected in odd-numbered years. Elections for the Regional Representatives in even-numbered regions were held prior to the conference and announced at the Annual Council Meeting:

  • Region 2 Representative: Chad W. Underwood (re-elected)
  • Region 4 Representative: Kent Crenshaw (re-elected). Kent is the Executive Director of Disability Rights & Resources in Montgomery, Alabama.
  • Region 6 Representative: Julie Espinoza (re-elected). Julie is the IL Skills Specialist at REACH of Plano in Plano, Texas.
  • Region 8 Representative: Candie Dalton (re-elected). Candie is Executive Director of Atlantis Community in Denver, Colorado.
  • Region 10 Representative: Kimberly Meck (re-elected). Kimberly is the Executive Director of the Alliance of People with Disabilities in Seattle, Washington.

Congratulations to all of our new and returning Governing Board members!


Other News

Another First for NCIL: Presentation on Providing Culturally Competent IL Services in the Orthodox Jewish Community

On Thursday morning, NCIL hosted a break-out session that made history. “Providing Culturally Competent IL Services in the Orthodox Jewish Community” put this underserved community on the national stage. Sharon Shapiro-Lacks, Executive Director of Yad HaChazakah (www.yadempowers.org) highlighted the unique challenges of doing competent IL work within the Orthodox Jewish Community while NCIL’s own Sheryl Grossman underscored the skills and resources necessary to competently serve Orthodox Jews in secular CIL settings. The session was well-attended and generated much lively discussion online for several days after. This was just one example of NCIL’s attention to being representative of its diverse membership and we hope to continue to see this grow and prosper in the coming years.

Honoring Jamey George

Jamey George, Executive Director of The Freedom Center in Frederick, Maryland passed away unexpectedly just two weeks before the NCIL Conference. Jamey was an outstanding advocate and long-time NCIL member who had served on NCIL’s Board and Subcommittees multiple times through the years. Jamey will be missed by so many of us. A special election will be held in Region 3 to elect a new Region 3 Representative after the conference. A photograph of Jamey will be added to NCIL’s Wall of Fame in our office in Washington, DC, which includes all of NCIL’s past Board members that have passed away.


Awards

Each year NCIL uses the Awards Banquet to recognize and thank advocates for their outstanding work during the past year. We strive to select and honor individuals that are not often awarded on a national stage. The Awards Banquet is truly a special event and we offer our deepest appreciation for this year’s winners, listed below.

National Advocacy Awards:

  • Max Starkloff Lifetime Achievement Award: Mike Oxford
  • President’s Award: Paul Timmons
  • Corey Rowley National Advocacy Award: Christy Dunaway
  • Frank Harkin Memorial Award: Senator Tammy Duckworth
  • Diana Viets Award: Jessica Jimenez

Regional Advocacy Awards:

  • Region 1: Sam Liss
  • Region 2: Jonathan Dollhopf
  • Region 3: The Maryland Association of Centers for Independent Living
  • Region 4: Shelly Simmons
  • Region 5: Amber Smock
  • Region 6: Michele Erwin
  • Region 7: Dot Nary
  • Region 8: Dawn Russell
  • Region 9: Amina Donna Kruck
  • Region 10: Joyanna Geisler


Sponsors

We would like to sincerely thank all our sponsors and exhibitors for the 2018 Annual Conference on Independent Living. We had a record number of exhibitors this year who provided great information to all of our attendees. Many of our exhibitors and sponsors were new to NCIL this year and were absolutely blown away by the amount of passion and energy that the IL Movement can generate! Without the support of our sponsors, exhibitors, and advertisers, this conference would not be possible. We hope to see you next year!

Soldier for Justice

  • Anthem
  • Centene

Champion

  • Verizon
  • Uber

Revolutionary

  • UnitedHealthcare
  • Waymo
  • PhRMA
  • Walmart

Mover & Shaker

  • Motor Coach Industries
  • Center for Disability Rights

Activist

  • Airbnb
  • Ability360
  • Pride Mobility
  • Molina Healthcare
  • Institute for Educational Leadership

Catalyst

  • Amtrak
  • National Disability Institute
  • Microsoft
  • Mitsubishi Electric America Foundation

Donors: Tracfone Wireless, American Association for Homecare, Shepherd Center, American Association of People with Disabilities, and Yoshiko Dart.

NCIL Mourns the Loss of Roger Frischenmeyer

It is with great sadness that we write to inform you of the passing of Roger Frischenmeyer. Roger was an Independent Living Specialist at Prairie Independent Living Resource Center, Inc. (PILR), a NCIL Governing Board Member, Chair of NCIL’s Annual Conference Subcommittee, and a friend and mentor to many. Roger passed away at his home on Saturday, August 11. Read Roger’s complete obituary.

NCIL logo - National Council on Independent LivingRoger was an Independent Living Specialist at PILR for nearly two decades. During this time, he served on numerous boards, including the Kansas Commission on Disability Concerns, the Kansas Disability Caucus, and the Assistive Technology for Kansans Advisory Council. In 2014, Roger won NCIL’s Region VIII Advocacy Award for his outstanding systems advocacy efforts. Chris Owens, Executive Director of PILR, said “Roger believed that everyone has the right to live, love, work and play in the community of our choice, and to that end was quite outspoken. Roger’s passion was working with our youth with disabilities. He wanted them to be proud of being a person with a disability and to be contributing members in the community. Nothing gave him more joy than when a youth he’d mentored came up to him to tell him about becoming employed. His PILR family misses him greatly.”  [Read more…]

CILs and SILCs: Sign-On to the Letter Urging the Senate to Oppose Kavanaugh Nomination

Based on a careful review of Judge Brett Kavanaugh’s opinions, NCIL opposes his appointment to the United States Supreme Court. Judge Kavanaugh’s opinions on healthcare, self-determination, employment, and education for people with disabilities are damaging to disability rights and his appointment to the U.S. Supreme Court would threaten the rights and lives of Americans with disabilities. Read more about why NCIL opposes this nomination.

NCIL logo - National Council on Independent LivingWe encourage Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other organizations that support disability rights to add their organization as a signatory to the letter urging the Senate to oppose his nomination to the Supreme Court.

The deadline to add your organization as a signatory is the close of business Thursday, August 16, 2018.

NCIL Opposes Nomination of Brett Kavanaugh to U.S. Supreme Court

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 of individuals and organizations 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 logo - National Council on Independent LivingBased on a careful review of Judge Brett Kavanaugh’s opinions, NCIL opposes his appointment to the United States Supreme Court. Judge Kavanaugh’s opinions on healthcare, self-determination, employment, and education for people with disabilities are damaging to disability rights and his appointment to the U.S. Supreme Court would threaten the rights and lives of Americans with disabilities.

Several of Judge Kavanaugh’s decisions are particularly concerning. One example of this is his ruling in Doe ex rel. Tarlow v. D.C., in which a class of people with intellectual disabilities living in facilities in the District of Columbia were subjected to elective surgeries (including unwanted abortions) based on the consent of District officials, without attempting to determine the individuals’ own wishes. While the district court ruled in favor of the plaintiffs, on appeal Judge Kavanaugh ruled in favor of the district stating that “accepting the wishes of patients who lack (and have always lacked) the mental capacity to make medical decisions does not make logical sense and would cause erroneous medical decisions – with harmful or even deadly consequences to intellectually disabled persons.” This decision is deeply discriminatory and based on flawed assumptions about the capacity of individuals with intellectual disabilities. It is in stark contrast to the philosophy of independent living, which is grounded in the belief that people with all types of disabilities are the best experts on their own needs and should be in control of the decisions impacting their lives. In situations where people with intellectual disabilities may need assistance with making decisions, emerging practices like Supported Decision-Making will allow them to receive the supports they need to make a decision while also respecting their rights.

Additionally, access to healthcare is critical for people with disabilities, and NCIL finds the opinions expressed repeatedly by Judge Kavanaugh against the Affordable Care Act (ACA) to be very concerning. Judge Kavanaugh’s repeated attacks on the ACA are a threat to healthcare access, and if appointed to the U.S. Supreme Court, he would jeopardize our ability to access the healthcare and other supports that allow us the ability to live, work, and participate fully in the communities where we reside. The ACA provides access to healthcare for many people with disabilities who had previously been denied due to pre-existing conditions, and many of the other protections under the ACA are critical for ensuring we can receive services in the community rather than in institutions. Rolling back the ACA would be an infringement on our civil rights that would ultimately result in a loss of independence and increased institutionalization.  [Read more…]

Get Ready to Get Out the Vote! Upcoming Webinars on Voter Engagement

As we get closer to the midterms, several organizations are holding webinars to help organizations and individual advocates become more engaged in the democratic process and participate in Get Out The Vote activities.  [Read more…]