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

NCIL Mourns the Passing of David Burds

David Burds at a photo exhibit on the disability rights movementDear Friends and Colleagues,

It is with heavy hearts that we must inform you that a pioneer and active advocate of the Independent Living community, David Burds, passed away on January 30, 2016. Dave was an advocate for the rights of people with disabilities for over 35 years. He worked at the Endependence Center of Northern Virginia (ECNV) in Arlington, Virginia for a total of 15 years, including working as the Executive Director for 6 years. Dave also served on the Board of the National Council on Independent Living from 2009-2011.

Dave believed in the Independent Living philosophy – the idea that people with disabilities are the best experts on their own needs, having crucial and valuable perspective to contribute and deserving of equal opportunity to decide how to live, work, and take part in their communities, particularly in reference to services that powerfully affect their day-to-day lives and access to independence. With this philosophy, Dave pushed for the inclusion of people with disabilities.

We know Dave best as a quiet yet strong leader. He was not afraid to work on a grassroots level, which allowed him to ensure consumer directed options and transition services at ECNV. He stayed true to disability advocacy through his active participation in both NCIL and ADAPT. Dave was a husband, father, grandfather, and a big sports lover. We will miss his amazing dedication and passion.

A memorial service is set for 2:00 p.m. February 21 at Key Bridge Marriott Hotel. The burial will be in Epworth, IA, at a later date. Donations in lieu of flowers can be sent to ECNV: 2300 Clarendon Blvd, #305 / Arlington, VA 22201.

An Update from the NCIL ADA / Civil Rights Subcommittee

During this quarter, NCIL’s ADA / Civil Rights Committee Subcommittee has been working on several projects and paying attention to bills in Congress that have the potential to affect the civil rights of persons with disabilities nationwide.

ADA Notification

H.R. 3765: filed by Representative Ted Poe (R-TX; 2nd Congressional District)

Titled the ADA Education and Reform Act of 2015, H.R. 3765 was introduced and assigned to committee in October 2015. This bill contains language similar to that used in past pieces of legislation that would have limited the ADA. It is similar to the ADA Notification Act, but with a new twist: Section 3 of the bill creates a new crime for sending a demand letter… alleging a violation of section 302 or 303 of the Americans with Disabilities Act of 1990. This in itself is damaging and unacceptable. Nowhere else in civil rights legislation is it a crime to file a complaint. You will notice below many of the co-sponsors are from states that have no other options for complaint resolution.

The bill also reintroduces a Notice & Cure Period. Businesses have already had over 25 years to comply with the ADA. If they have not done so by now, why should they need an additional 6 month barrier before actions can be taken?

Current co-sponsors: Rep. Doug Colling (R-GA), Rep David Jolly (R-FL), Rep. Kenny Marchant (R-TX), Rep. Lamar Smith (R-TX), Rep. Mick Mulvaney (R-SC), Rep Devin Nunes (R-CA), Rep. Jeff Denham (R-CA), Rep. Brian Babin (R-TX), Rep. Bradley Byrne (R-AL), Rep David Valado (R-CA), Rep. Michael Burgess (R-TX), Rep. Ilena Ros-Lehtinen (R-FL), Rep David Schweikert (R-AZ), Rep. Tom Emmer (R-MN), Rep Scott Peters (D-CA), Rep. Tom Cole (R-OK)

The Murphy Bill

H.R. 2646, the Helping Families in Mental Health Crisis Act, is progressing through committee. In addition to the ADR / Civil Rights Subcommittee, NCIL’s Mental Health Subcommittee is also monitoring both of these bills.

The Helping Families in Mental Health Crisis Act of 2015 was introduced in June 2015 by Rep. Tim Murphy (R-PA). The bill has been referred to the Subcommittee on Early Childhood, Elementary, and Secondary Education. There are currently 179 Co-Sponsors. View progress of the bill. This bill contains damaging language that affects the rights of persons with disabilities and we are monitoring it closely.

We received word that on February 2nd Rep. Gene Green (D-TX) is filing a bill that is proposed as an answer to H.R. 2646 and is Bi-Partisan. We are reviewing it and intend provide comments.

NCIL Access Survey Academy Project

The Access Survey Academy Project held its inaugural training in November in Nitro, West Virginia titled NCIL “ASAP Survey Training”. This is the “foundation” training NCIL will be presenting at several locations across the country in 2016 to educate and develop a reliable network of accessibility surveyors at Centers for Independent Living and Disability Rights Centers. Stay tuned for more info on this and more exciting news coming about the NCIL Access Academy! The project was sponsored by the West Virginia SILC and WVDRS, and we extend our gratitude for their support!

The goal will be to expand the project in 2016, and to develop continuing education and networking opportunities in addition to holding several more “foundation” trainings nationwide. Each onsite training will last three days. Mark Derry leads the group through all phases of access surveys, and explains how to assess the built environment. The goal of this first-of-its-kind project is to form a nationwide network of certified access survey specialists. Raising awareness and understanding of access also grows the role of CILs in the communities we serve, especially when those seeking technical assistance come to the Center first as the experts in access.  There are also a multitude of directions Centers can take the formulas, methods, tips, and data from this training program and develop fee-for-service opportunities providing survey, plan review, or training services.

Parenting Task Force

The NCIL Board recently formed the Parenting Task Force as a part of the ADA / Civil Rights Subcommittee. We are thrilled to be in the process of seeking members and launching this new Task Force! If you are interested in being part of the NCIL Parenting Task Force, please contact Mark Derry or Steve Higgins We will be discussing the Task Force during the next ADA / Civil Rights Subcommittee call.  [Read more…]

Happy Black History Month!

Dear Friends and Colleagues,

The National Council on Independent Living would like to take the time to say Happy Black History Month!

NCIL celebrates Black History Month because Black history is a part of our history. We cannot deny that there has been a disconnect in recognizing and including other marginalized populations, such as people of color, within the Independent Living Movement. That is why we are making intentional efforts to bring solidarity into disability advocacy. We encourage all of our members to acknowledge and celebrate Black History Month with us. Below, you can find some information about Black History and Black disability advocates. We encourage you to share these narratives with your staff and members.

According to the 2010 US Census, disability prevalence is highest among African Americans at 22.2 percent. Almost a quarter of African Americans experience disability.  We celebrate the Black lives, leaders, and advocacy that are a powerful force in our movement. Together, we continue to move forward to ensure the success of the Independent Living Movement.



From left to right: Fannie Lou Hamer, Malcolm X, Caxmee, Kajieme Powell, and James Baldwin

Image description: (From left to right) Fannie Lou Hamer, Malcolm X, Caxmee, Kajieme Powell, and James Baldwin.

Research Center Produces Spanish Version of Disability Language Guidelines

Source: RTC/IL

The University of Kansas Research and Training Center on Independent Living (RTC/IL) has produced a Spanish language version of its internationally known Guidelines: How to Write and Report About People with Disabilities.

Logo - University of Kansas Research and Training Center on Independent Living Life Span InstituteSince the first edition of the Guidelines was published in 1984, some of its recommendations have been adopted by the Associated Press, the American Association for the Advancement of Science, the American Psychological Association and other organizations. “The sixth edition was the only previous version that we translated into Spanish,” noted Center Director Glen White, “but as language evolves, we saw a need for a new Spanish edition.”

“We know that Spanish has many regional variations, and our focus on colloquial expressions presents real challenges for translation,” said White. “Yet we feel it is important to make this information available to Spanish speakers in the United States and around the world. Our goal is to encourage people to use respectful language and to stimulate conversation about what that means in their own culture.”

Katrina Birge, a 2011 graduate of KU, translated the Guidelines and its companion poster, “Your Words, Our Image,” from English into Central Mexican Spanish. “Sadly, in Central and South America, disability rights and perceptions of disability are extremely far behind,” she said. “My co-workers and cousins in Mexico have never heard some of these respectful terms.”

White’s personal connection with Peru also inspired the new Spanish translation. He has made 16 visits to Peru since 1998 to assist with development there of an independent living movement for people with disabilities, including a trip in January 2016.

The eighth edition of the Guidelines includes updated definitions of terms, plus three new sections: “Rosa’s Law and the Language of Bullying,” “Key Concepts in the Disability Community” and “A Few Exceptions.” The companion poster highlights selected terms from the brochure.

For more information, contact: Val Renault,, 785-864-0575.

Help Us Reach 1,000 Signatures to Reform AbilityOne!

We are so close to achieving 1,000 signatures for AbilityOne Reform. We have 800, and only need 200 more to reach our goal of 1,000 signatures.

Please consider signing the petition and sharing this link with your members, affiliates, chapters, family, friends, colleagues, and others.

The AbilityOne program is mandated to award federal contracts to employ people with disabilities. Last year those contracts totaled $2.8 billion. However, some of those contractors are not hiring enough people with significant disabilities to comply with their federal mandates, or, when they do, contractors are paying some disabled workers sub-minimum wages and overwhelmingly employing them in segregated environments – all while they rake in tens of millions of federal dollars for their executives. [Read more at…]

Violent Crimes: People with Disabilities and the CIL Response

In May of 2015, the Bureau of Justice Statistics released the latest report of crimes against people with disabilities. This data collected through the National Crime Victimization Survey revealed that people with disabilities in the U.S. experienced about 1.3 million violent victimizations in 2013 (BJS, 2015).

The rates of serious violent victimizations, which include rape, sexual assault, robbery, or aggravated assault, were more than three times higher than those reported by people without disabilities. Of the people with disabilities who experienced violent crimes, nearly 25% believe they were targeted because of their disability. It should be noted that this data does not include many groups such as those living in institutions.

The people who come to Centers for Independent Living (CILs) are counting on us to be advocates that provide information and resources on many difficult issues including violent crimes.

What can CILs do about these staggering statistics?

  • Seek out additional information and participate in webinars.
  • Watch out for and seek out funding to specifically address violence against people with disabilities.
  • Create partnerships and collaborations with domestic violence and sexual assault organizations.
  • Ensure that your CILs are a safe haven for people with disabilities through policy development and programming.
  • Use the core services to help identify people with disabilities who may need additional information or support or who are experiencing trauma from experiencing violent crimes. Ways to do this could include:
    • Questions on intake forms that ask if more information is needed about the topic to encourage more discussion about the issues.
    • Independent living skills classes can include information on safety planning
    • Peer support can acknowledge that violence happens and that healing is possible
  • Participate in the local efforts in communities across the country happening during National Crime Victims’ Rights Week, April 10 to 16, 2016.
    • National Crime Victims’ Rights Week (NCVRW) in 2016 is underscoring the importance of early intervention and victim services with this year’s theme; “Serving Victims. Building Trust. Restoring Hope.”
    • The full 2016 NCVRW Resource Guide will be online in February 2016, but CILs can reach out now to crime victim services providers to learn what is being planned locally – and how people with disabilities can be involved.
    • Watch the video or download the printable referral page and poster to hang in your office.

[Read more…]

Suggested Language for State Plans for Independent Living (SPIL) Regarding Emergency Management

Disasters, both natural and manmade, can strike anywhere at any time. Individuals with disabilities are disproportionately affected by disaster. Centers for Independent Living, Statewide Independent Living Councils, and Independent Living Associations are often uniquely qualified to provide an array of services to individuals with disabilities in preparation before, as well as during and after, disaster in their local area. While your area may not have been impacted by a disaster, climate change makes the possibility increasingly likely.

The National Council on Independent Living Emergency Planning and Response Subcommittee is composed of NCIL members who take a great interest in the issue of individuals with disabilities affected by disaster. Many of the members are actively involved in disaster planning and response within the disability community, and have provided disaster relief to individuals with disabilities for a number of years. Most of us became interested following a disaster that directly impacted our areas and consumers we served. We offer the following examples of how CILs, SILCs, and ILAs throughout the country have become involved with their local emergency management and affected systems change to ensure that individuals with disabilities are provided an equal level of service in disaster preparedness, response, and recovery.

Following these examples, is suggested language that could be included in State Plans for Independent Living to ensure that the state Independent Living programs can and will be allowed to provide emergency services, if necessary, in their local areas. We understand that many CILs, SILCs and ILAs may not have the capacity, funding, or staffing to provide direct disaster relief to their communities. However, with involvement in mitigation and preparedness activities, our community can perhaps be better prepared and less impacted. We believe that this involvement is easily considered under the core service of advocacy and the community service of systems advocacy. Assistance offered to individual consumers during and after a specific disaster can be easily included in and counted as one or more of the five core services of independent living.  [Read more…] Offers People with Disabilities Forum to Share Air Travel Experiences

Source: PVA

Individuals with disabilities now have a platform for sharing their stories, photos, videos and graphics about their air travel experiences., launched in January 2016 by Paralyzed Veterans of America, enables passengers with disabilities who utilize air travel to share positive and negative stories about their experiences.

The new website, launched in advance of the 30th anniversary of the Air Carrier Access Act (ACAA), seeks the help of passengers with disabilities in showing the progress that has been made as well as the work that remains to accomplish the true spirit of the ACAA.

“It’s not just people who use wheelchairs who have problems,” said Heather Ansley, associate general counsel for corporate and government relations for Paralyzed Veterans of America. “There are a lot of different nuances, and we want to show the importance of air travel for the independence of people with disabilities – from business trips to vacations to travel associated with medical needs.” offers a simple submission form in which air passengers with disabilities can submit their story, an image as well as additional images or videos relevant to describing their air travel experience. The site will also highlight some of the stories received by displaying them for others to review. [Read more at…]

NCIL’s Comments to ACL Show Great Teamwork!

On November 16, 2015, the Administration for Community Living (ACL) published a proposed rule for Independent Living Programs in the Federal Register. An announcement from ACL in regard to the published rule stated, “This proposed rule consolidates and streamlines prior regulations and provides details regarding new requirements included in the Workforce Innovation and Opportunity Act (WIOA). Signed into law in July 2014, WIOA moved IL programs from the Department of Education to the Department of Health and Human Services, creating the Independent Living Administration within ACL. WIOA also made changes to IL programs in areas including core services and development of state plans for independent living.” NCIL had been anticipating this announcement for some time, so the NCIL Rehabilitation Act & IL Funding Subcommittee was ready to take action when released. The Subcommittee decided to begin development of our comments with the three working groups that had previously worked together on WIOA and Reauthorization of the Rehabilitation Act, which included the ILA Workgroup, SILC Workgroup, and CIL Workgroup. The workgroups members are as follows:

  • ILA Workgroup: Maureen Ryan, Kelly Buckland, Lou Ann Kibbee, Mark Derry
  • SILC Workgroup: Pat Puckett, Dawn Francis, Ann McDaniel, Shannon Jones
  • CIL Workgroup: Diana Garrett, Doug Toelle, Roger Howard

Some the Rehab Act & IL Funding Subcommittee members also spent extra time helping with NCIL’s comments to the proposed rules. These Subcommittee members are: Dan Kessler, Paul Spooner, Lee Schultz, and Billy Altom.

I want to thank the members of the three workgroups and the Subcommittee for their tireless work in a short period of time in assisting NCIL with our comments on the Rules. I also want to thank the Shannon Jones and Dianna Garrett, Co-Chairs of the Rehab Act & IL Funding Subcommittee. Last but not least, thank you to NCIL staff Lindsay Baran and Kelly Buckland for combining the comments into a single document.

Thank you all! Fabulous work!

Lou Ann Kibbee

NCIL President

ADA Internet Regulations – Please Sign the Petition!

The National Federation of the Blind has launched a petition demanding that the Obama administration issue a Notice of Proposed Rule Making (NPRM) addressing the obligation of public accommodations to provide websites that are accessible to individuals with disabilities conformant to Title III of the ADA. The release date of the actual rule proposal for revising the Title III regulations of the ADA, originally scheduled for January of 2012, has been extended until sometime in 2018, eight years beyond the issuance of the original Advanced notice of Proposed Rule Making (ANPRM) and at least a year after the end of his administration.

Because this is a “we the people” petition, upon reaching 100,000 signatures, the Obama administration is required to respond. As people with disabilities, we know first-hand that equal access to the internet is paramount for education, to obtain and retain employment, and for everyday tasks such as paying bills, online shopping, booking travel, and the list goes on and on.

Please sign the petition and share it with your networks!