the advocacy monitor

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

Civil Rights & the ADA

Not Dead Yet Submits Public Comment on Proposal on Living Organ Donation By “Persons With Certain Fatal Diseases”

Source: Not Dead Yet

This is a complicated subject. It impacts people with disabilities in multiple ways, both as organ donors and recipients. But the tone and recommendations of the proposal by the Ethics Committee of the Organ Procurement and Transplantation Network needed a response. Some excerpts follow.

The organ transplant program saves lives, including some of our organization’s grassroots advocates. Its goals are of unquestionable significance. In order to function effectively though, it needs to have strong public trust and support. The safety of potential donors should be of utmost concern. All lives of living donors must be equally valued. The OPTN must never pursue any policies that expose some donors to more risk than other donors.

We agree that there are some underlying health conditions that would not preclude a willing person from being a living donor. Decisions must be made on a case-by-case basis with the preservation of the person’s normal health as a paramount value. We are therefore disturbed and disappointed by the tone and tenor of the proposal as well as the recommendations that would create a two-tiered system of assessment, reporting and scrutiny.  [Read more…]

NCIL Submits Letter Opposing the ADA Education and Reform Act

On July 26, 2017, millions of people with disabilities throughout this country celebrated the 27th anniversary of the Americans with Disabilities Act of 1990 (ADA). Unfortunately, many in the business community decided to celebrate the anniversary by diminishing this historic civil rights legislation through a letter of support for the ADA Education and Reform Act of 2017 (H.R. 620). Their letter supporting this extremely dangerous legislation, which was sent to Congress, was titled It’s Time to Restore the Integrity of the ADA (PDF).

NCIL wrote a response to their letter, which was signed by 171 organizations and sent to Representatives Paul Ryan (Speaker of the House) and Nancy Pelosi (Minority Leader) on October 4, 2017.  [Read more…]

Add Your Organization as a Signatory to NCIL’s Letter Opposing the ADA Education and Reform Act

On July 26, 2017, millions of people with disabilities throughout this country celebrated the 27th anniversary of the Americans with Disabilities Act of 1990 (ADA). Unfortunately, many in the business community decided to celebrate the anniversary by diminishing this historic civil rights legislation through a letter of support for the ADA Education and Reform Act of 2017 (H.R. 620). Their letter supporting this extremely dangerous legislation, which was sent to Congress, was titled It’s Time to Restore the Integrity of the ADA (PDF).

NCIL logo - National Council on Independent LivingNCIL has drafted a response to their letter, which will be sent to Representatives Paul Ryan (Speaker of the House) and Nancy Pelosi (Minority Leader). We encourage you to add your organization as a signatory. The deadline to sign on is Monday, October 2, 2017.

H.R. 620 was introduced by Representative Ted Poe of Texas in the 115th Congress. It would create significant obstacles for people with disabilities to enforce their rights under Title III of the ADA to access public accommodations and would impede their ability to engage in daily activities and participate in mainstream society.

Please join us as we fight this dangerous bill.

Less than One Week Until #NationalVoterRegistrationDay 

September 26, 2017 is National Voter Registration Day, a holiday established in 2012 to encourage people to register to vote and update their registration. This year, NCIL is a partner of National Voter Registration Day and will be promoting the day on social media. It’s not too late for your CIL or SILC to get involved!

NCIL logo - National Council on Independent LivingThere are a few ways that you can participate in National Voter Registration Day 2017 next Tuesday:

  • It’s not too late, so sign your organization on as a partner!
  • Encourage your consumers to register to vote or update their registration, especially if they recently turned 18 years of age, have moved recently, changed their name, or have not voted in recent elections.
  • Engage on social media! Tweet using the hashtag #NationalVoterRegistrationDay, post on Facebook and encourage your followers to register to vote through an online registration page such as AAPD’s online voter registration tool.
  • Encourage voters with disabilities to engage in great non-partisan voting initiatives such as #CripTheVote on Twitter and AAPD’s Rev Up Campaign.
  • Let your consumers know if there are local elections in your municipality or state this year.

Please contact Sarah Blahovec, Disability Vote Organizer, at sarah@ncil.org if you have any questions.

Are You Wondering How You Can Help Disaster Survivors Right Now?

A message from the NCIL Emergency Preparedness Subcommittee

Our country has been wracked recently with one natural disaster after another. Right now there are three storms in the Atlantic with one of them heading straight toward the American Territories of Puerto Rico and the Virgin Islands, which have not yet begun their recovery from Hurricane Irma. Texas will be recovering from Hurricane Harvey for years and we must not forget about the wildfires in Montana, Idaho, Oregon, California, and other western states.

NCIL logo - National Council on Independent LivingBecause we have done a great job of advocating for home and community-based services over the years, we are living lives of increased freedom in the community, which naturally means that we are more susceptible to adverse changes in those communities. A Hurricane wreaks havoc on the natural support systems that we depend on to live independently.

Fortunately, there is a dedicated group of individuals who recognize our vulnerability in a disaster and have, over the past 20 years, formed agencies, committees, and task forces to address the specific issues of people with disabilities affected by disaster. These agencies are stepping up in incredible ways to help our people who are hungry, homeless, and without their usual support systems as a result of a recent natural disaster. Many of you are asking how you can help and where and what to donate. Here are four specific ways.  [Read more…]

Resources for Individual and Workplace Wellness: An Update from the NCIL Violence & Abuse Subcommittee

Increased violence in our communities results in more victims – and victim advocates – seeking ways to stay well and opportunities for support. Trauma and vicarious trauma deeply impacts people.

The NCIL Violence & Abuse Subcommittee encourages Centers for Independent Living (CILs) to make time to support peers and staff in daily wellness and sharing wellness resources. Tending to workplace wellness and supporting individual wellness plans will go a long way as we persist in the face of oppressive systems and the attacks on our civil rights across our country.  [Read more…]

CIL-NET Presents… An IL Conversation via Teleconference: Parenting with a Disability

  • Presented by: Kelly Buckland, Sarah Launderville, Susan Yuan, and Kimberly Tissot
  • September 21, 2017; 3:00 – 4:30 PM Eastern

Join to discuss:

  • Work the NCIL Taskforce on Parenting with a Disability is involved in
  • Opportunities available for advocacy
  • Rights of parents with disabilities
  • Where we need to go from here

Join the conversation via teleconference: 281.404.1544 using PIN 9558554.  [Read more…]

House Judiciary Committee Approved H.R. 620 – Contact Your Representatives!

On Thursday, September 7, 2017, the House Judiciary Committee held a markup of H.R. 620, the ADA Education and Reform Act of 2017. The bill was voted out of committee along party lines and will now go to the full House for a vote. All of the amendments proposed by democrats were voted down, also along party lines.

NCIL logo - National Council on Independent LivingH.R. 620 is a terrible bill that would be a major step backwards for people with disabilities. The bill would weaken the protections afforded us under the Americans with Disabilities Act and make it even harder to enforce our rights under the ADA. Twenty seven years after the passage of the ADA, the fact that Congress is working to make it easier to discriminate against people with disabilities is shameful.

We are continuing to work on this issue, and we will keep you updated. We cannot let this bill become law. Please take action and contact your Representatives today! Tell them that H.R. 620 is harmful to people with disabilities, so they must vote NO!

For more information H.R. 620, see our April alert, CCD’s “Save the ADA” website, and the Oppose ADA Notification Facebook page. And, if you haven’t signed the change.org petition yet, please do so today!

Markup Tomorrow: Call House Judiciary Members to Oppose H.R. 620!

Congress has introduced several ADA Notification bills this year, and one that’s been gaining a lot of traction is H.R. 620, the ADA Education and Reform Act of 2017. H.R. 620 is a terrible bill that would weaken the protections afforded people with disabilities under the Americans with Disabilities Act. This would be a major setback for our community!

The House Judiciary Committee will be holding a full committee markup tomorrow, Thursday September 7. Please take action! We need everyone to contact House Judiciary Committee members, listed below, and urge them to vote NO on this appalling bill. If you are near the DC area, we also encourage you to join NCIL staff at this markup in room 2141 of the Rayburn House Office Building.

This bill, as with other ADA Notification bills, would create significant additional obstacles for people with disabilities to enforce our rights under the ADA. Having just passed the 27th anniversary of the Americans with Disabilities Act, this is simply unacceptable. Please contact these Representatives today!

For more information H.R. 620, see our April alert, CCD’s Letter of Opposition, and the Oppose ADA Notification Facebook page.

NCIL logo - National Council on Independent LivingHouse Judiciary Committee Members

Republicans:

  • Bob Goodlatte, Chair (VA)
  • Jim Sensenbrenner (WI)
  • Lamar Smith (TX)
  • Steve Chabot (OH)
  • Darrell Issa (CA)
  • Steve King (IA)
  • Trent Franks (AZ)
  • Louie Gohmert (TX)
  • Jim Jordan (OH)
  • Ted Poe (TX) * Bill sponsor
  • Tom Marino (PA)
  • Trey Gowdy (SC)
  • Raul Labrador (ID)
  • Blake Farenthold (TX)
  • Doug Collins (GA)
  • Ron DeSantis (FL)
  • Ken Buck (CO)
  • John Ratcliffe (TX)
  • Martha Roby (AL)
  • Matt Gaetz (FL)
  • Mike Johnson (LA)
  • Andy Biggs (AZ)
  • John Rutherford (FL)
  • Karen Handel (GA)

Democrats:

  • John Conyers, Ranking Member (MI)
  • Jerry Nadler (NY)
  • Zoe Lofgren (CA)
  • Sheila Jackson Lee (TX)
  • Steve Cohen (TN)
  • Hank Johnson, Jr. (GA)
  • Ted Deutch (FL)
  • Luis Gutierrez (IL)
  • Karen Bass (CA)
  • Cedric Richmond (LA)
  • Hakeem Jeffries (NY)
  • David Cicilline (RI)
  • Eric Swalwell (CA)
  • Ted Lieu (CA)
  • Jamie Raskin (MD)
  • Pramila Jayapal (WA)
  • Brad Schneider (IL)

Election Assistance Commission to Discuss Next Generation of Voting Machine Accessibility Guidelines

The Federal Government is setting standards for the next generation of voting machines. All manufacturers and most states buy equipment built to these standards, called VVSG (Voluntary Voting System Guidelines). On September 11th and 12th, the Technical Guidelines Development Committee (TGDC) will convene to discuss the development of the VVSG, 2.0. The development of the VVSG are critical to improving the accessibility of America’s voting systems and software, according to the U.S. Election Assistance Commission (EAC) as they “provide a set of specifications and requirements against [which] systems can be tested to determine if they provide all of the basic functionality, accessibility, and security capabilities required of voting systems.” It is vital that disability organizations and advocates pay attention to the development of the VVSG 2.0, the fifth iteration of these standards, so that they can provide comments to ensure that the perspective and interests of people with disabilities in casting a private and independent ballot are taken seriously.  [Read more…]