the advocacy monitor

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

Action Alert: Protest Disability Snuff Film “Me Before You”!

  • When: June 3, 2016, one hour before a showing of Me Before You
  • Where: Your local movie theater, many cities, USA and worldwide
  • What: Peacefully distribute a leaflet
  • Why: To oppose ableism and the film’s message that disabled people are better off dead (and that others are better off without us)

Not Dead Yet LogoMe Before You is the latest Hollywood blockbuster to grossly misrepresent the lived experience of the majority of disabled people. In the film, a young man becomes disabled, falls in love with his ‘carer’ and they have an incredible 6 months together. Despite her opposition, however, our hero does the “honorable” thing by killing himself at the Swiss euthanasia clinic Dignitas – so she can move on and he is no longer a burden to her. Based on the best-selling novel of the same name, Me Before You is little more than a disability snuff film, giving audiences the message that if you’re a disabled person, you’re better off dead.

Ways you can protest:

  • Two or more people can peacefully hand out a leaflet (available on the Not Dead Yet website)
  • Display a Me Before You protest banner (PDF), which can be made at local print shops
  • Send a press release or use NDY’s release (coming soon) to send to your local media.
  • Join the worldwide social media Thunderclap.
  • Tweet using #MeBeforeYou #LiveBoldly #MeBeforeEuthanasia #MeBeforeAbleism
  • Share the articles linked below with friends and colleagues.

For more information, see the following articles:

For more information or to discuss your plans, contact John Kelly (jkelly@notdeadyet.org) or Diane Coleman (dcoleman@notdeadyet.org).

NCIL Statement on Opioids, Chronic Pain, and the Pharmaceutical Industry

The National Council on Independent Living (NCIL) applauds the efforts of Congress and the Administration to address the rising rates of opioid addiction and overdose in this country. The rate of opioid abuse quadrupled from 1999 to 2014, and data from the Centers for Disease Control and Prevention (CDC) found opioids to be involved in a record 28,647 deaths in 2014. This is an extremely important public health issue and we are very pleased to see it being addressed.

While working to address opioid overdoses, it is important to keep in mind that this country is facing two major and interrelated public health crises: opioid addiction and chronic pain. A 2011 Institute of Medicine (IOM) report found that more than 100 million American adults live with chronic pain, with a 2014 Journal of Pain study finding that 39.4 million people experience pain most or every day. While an evidence-based review found that only 3.3% of chronic pain patients will become addicted with chronic opioid therapy, a recent survey found that eight in 10 people abusing prescription medications said they were doing so to treat pain. Restricting access to medications, especially without providing effective alternatives, will not solve either problem. Any true solution to the problem of opioid addiction will be unsuccessful if the underlying public health crisis of chronic pain is not addressed as well.

We would also like to address the role the pharmaceutical industry has played in these epidemics. NCIL rejects placing blame for this crisis on patients, which has been all too common. Further, while there is certainly a need for improved guidance and further research on prescribing practices by physicians, much of the blame lies squarely on the shoulders of the pharmaceutical industry. Since the 1990s, pharmaceutical companies have been aggressively using manipulative and dishonest marketing strategies to increase sales, putting profits above good practice. Reports of falsifying medication effectiveness and safety, spending billions on drug promotions, and paying doctors to recommend their products have become commonplace. An LA Times article from earlier this month describing Purdue Pharma’s deceptive marketing of OxyContin is the most recent example of this. The pharmaceutical industry’s strategies have been extremely profitable for the companies, and extremely detrimental to patients.

We hope that the major role the pharmaceutical industry has played in the rise of opioid addiction and overdoses will no longer go ignored. Opioid addiction and chronic pain are both significant problems that impact the lives of many Americans. We applaud the actions that Congress and the Administration have taken thus far, and we urge them to consider the needs of both those living with opioid addiction and those living with chronic pain in future policy decisions. We also urge Congress and the Administration to carefully consider the pharmaceutical industry’s role in these issues, and to hold the industry fully accountable for the harm they’ve caused.

Announcing: The 2016 NCIL Policy Briefing

Thursday, July 14, 2016; 3:00 – 4:30 p.m. Eastern

Register online.

NCIL is happy to announce our 11th Annual Policy Briefing.

This important presentation will to bring advocates up-to-date on national issues and federal policies that affect people with disabilities and provide participants with question and answer sessions with national leaders to ensure you have in-depth information on the issues you care about most.

The Policy Briefing will ensure that we are fired up and prepared for NCIL’s 2016 Day on the Hill! For those of you who will not be at the 2016 Annual Conference on Independent Living, this will provide you with valuable and timely information that you can use in your community. Please share this training announcement far and wide so that our issues reach many people.

This teleconference is free for NCIL Members. There is a $25.00 registration fee for Non-Members, per call-in site. Fee does not apply per participant in group, provided the group uses the same conference line. 

The Policy Briefing will be available via teleconference and CART (captioned) webcast. You must register by 12:00 Noon Eastern on July 14 to participate in the call.  [Read more…]

An Update from the NCIL Housing Subcommittee

The Senate and the House both are currently in deliberations over appropriations for HUD and USDA Rural Housing, and advocacy is needed to ensure that housing programs receive the funding they need. Both groups have released their budget numbers for HUD appropriations, but Senate hasn’t for USDA Rural Housing.

This chart from Enterprise (PDF) lists the programs and the amounts. Fiscal Year (FY) 2016 is the final budget numbers for the current year and FY17 Proposed is what the President proposed. FY 2017 House and FY 2017 Senate are self-explanatory. It’s a given that the President won’t receive his requested amounts, so the issue here is what we will end up with between the House and the Senate numbers when they are reconciled.

Many programs saw more-or-less the same funding they received in 2016. Apparently Congress has little appetite for a budgetary fight on housing in an election year, although reportedly the House has proposed significant cuts to programs serving low-to-moderate income households such as food assistance[Read more…]

Financial Capability Survey for Veterans and their Families

National Disability Institute (NDI) has worked closely the past several years, partnering with IRS and Department of Veterans Affairs, to improve the overall financial wellness of Veterans, service members and their families. NDI developed a brief electronic survey to collect information to assist NDI and its partners in developing and improving access to free financial and tax education programs and services for Veterans, their families and organizations that serve Veterans. The survey is completely voluntary, names and personal information will in no way be used or collected. If you are a Veteran, please take less than 10 minutes of your time to complete this very important survey to help us improve services for Veterans. If you know a Veteran(s) encourage them to take the survey so we may reach as many Veterans and their families as possible. Let’s all show our appreciation for our Veterans, service members and their families by ensuring the voice of our Veteran community is heard by taking the Financial Capability Survey for Veterans and their families.

IRS employees who are Veterans are welcome to take the survey since the platform hosting the survey is not blocked by the IRS.

EEOC Issues New Resource Document Addressing Issues Related to Leave and Disability

Source: EEOC

The U.S. Equal Employment Opportunity Commission (EEOC) today issued a new resource document that addresses the rights of employees with disabilities who seek leave as a reasonable accommodation under the Americans with Disabilities Act of 1990 (ADA). The document is entitled Employer-Provided Leave and the Americans with Disabilities Act.

Disability charges filed with the EEOC reached a new high in fiscal year 2015, increasing over 6 percent from the previous year. The ADA requires employers to provide reasonable accommodations that allow people with disabilities to perform the essential functions of their jobs, unless it would pose an undue hardship for the employer.

One troubling trend the EEOC has identified in ADA charges is the prevalence of employer policies that deny or unlawfully restrict the use of leave as a reasonable accommodation. These policies often serve as systemic barriers to the employment of workers with disabilities. They may cause many workers to be terminated who otherwise could have returned to work after obtaining needed leave without undue hardship to the employer. EEOC regulations already provide that reasonable accommodations may include leave, potentially including unpaid leave that exceeds a company’s normal leave allowances. Read more at eeoc.gov.

FAQ for the Alternative Financing Program Discretionary Grant Competition

A Frequently Asked Questions (FAQ) document (PDF) is now available for the AFP Funding Opportunity Announcement (FOA), which closes June 6th.

You can also download a recording and transcript of the AFP FOA conference.

  • Title: Assistive Technology Alternative Financing Program
  • Agency: Administration for Community Living (ACL)
  • Center: Center for Integrated Programs (CIP)
  • Funding Opportunity Number: HHS-2016-ACL-CIP-ATTF-0164

[Read more…]

Greyhound Disability Settlement: The Latest on the Greyhound Lawsuit and Claims Process from the U.S. Department of Justice

NCIL Presents… A National Teleconference

Thursday, June 2, 2016; 4:00 – 5:00 p.m. Eastern

Register online.

Please join NCIL on Thursday, June 2nd, 2016, at 4:00 p.m. Eastern to hear about the Department of Justice’s recent filing of a lawsuit against Greyhound Lines, Inc. and, importantly, the Claims Process that is currently underway to help compensate any person who 1) has a disability 2) traveled or attempted to travel on Greyhound between February 8, 2013, and February 8, 2016, and 3) during that travel or attempted travel experienced disability discrimination. This historic settlement will allow for compensation of all individuals who file valid claims on or before November 10, 2016 and is intended to remedy the nationwide practice of disability discrimination that the United States alleges occurred on Greyhound. DOJ Trial Attorneys Nabina Sinha and Anne Langford will discuss the resolution, the Claims Process, and will be available to answer questions.

Read more about the settlement at justice.gov.

This teleconference is free for NCIL Members. There is a $25.00 registration fee for Non-Members, per call-in site. Fee does not apply per participant in group, provided the group uses the same conference line.

The Policy Briefing will be available via teleconference and CART (captioned) webcast. You must register by 12:00 Noon Eastern on June 2nd to participate in the call.

Please contact Tim Fuchs at tim@ncil.org with any questions.

Fair Housing Under Attack as Senate Considers THUD Bill – Take Action TODAY: Urge Your Senators to Oppose the Lee-Cotton Amendment

Source: National Low Income Housing Coalition

We really need you to weigh in to defeat an amendment that will undermine our nation’s efforts to expand opportunity and fairness for all.

Senators Mike Lee (R-UT) and Tom Cotton (R-AR) are now being joined by Sen. David Vitter (R-LA) and Senate Banking Committee Chair Richard Shelby (R-AL) on an amendment to prohibit funding for implementation or enforcement of HUD’s Affirmatively Furthering Fair Housing (“AFFH”) rule.

The National Low Income Housing Coalition sent a letter (PDF) to the Senate explaining why this misguided and harmful amendment must be defeated. The AFFH rule simply clarifies existing fair housing obligations and will allow states and local governments to more fairly and effectively invest federal funds in their communities.

Take Action

Contact your Senators today and urge them to oppose the Lee-Cotton amendment. Your voice is critical in defeating this amendment!  [Read more…]

Action Alert: Help Us Stop Attacks on the ADA!

Each year we see new versions of ‘ADA Notification’ bills get introduced in Congress. To this point they have failed to move, but they are continuing to build support. This year alone we’ve seen three bills introduced, which NCIL’s ADA Civil Rights Subcommittee wrote about in last week’s WAM. The common thread among all three bills, as well as previous iterations, is that they require people with disabilities to wait even longer to exercise our civil rights. If any of these bills pass, people with disabilities will be the only protected class of individuals required to wait a set amount of time for our rights to be recognized. Twenty-six years after the ADA was passed, this is unacceptable.

This Thursday, the House Judiciary Subcommittee on the Constitution and Civil Justice will be holding a hearing on “Examining Legislation to Promote the Effective Enforcement of the ADA’s Public Accommodation Provisions.” NCIL’s Executive Director, Kelly Buckland, has been invited to testify. Kelly will be discussing the importance of the ADA and the significant harms that these bills would cause if passed.

In a recent statement by Congressman Ted Poe (R-TX), he said that the intent behind H.R. 3765 is to protect American businesses from “cash-hungry attorneys and plaintiffs” who will “file a lawsuit and make some cash.” This has been the intent behind all of the ADA notification bills we’ve seen, and these efforts are sorely misguided. The problem Congress is trying to fix will not be solved with these bills, because it is not a problem with the ADA. In fact, Title III of the ADA does not authorize damages; any monetary damages for accessibility violations are based on state laws in only a handful of states.

Additionally, H.R. 3765 takes ADA notification bills to a new and even more dangerous level. First, it prohibits people from sending any type of pre-suit notification alleging a violation of section 302 or 303 of the ADA without including a list of specific information, and it makes it a crime to file without meeting these requirements by imposing a criminal fine. Second, the business owner or operator then has 60 days to provide a ‘written description outlining improvements that will be made to remove the barrier,’ and an additional 120 days to ‘remove the barrier or make substantial progress in removing the period.’ Only after that can a civil action be taken.

It is shameful that after 26 years, businesses may be given so much additional time to comply – or even just ‘make substantial progress’ toward complying – with the ADA. Even worse is the possibility of being fined for trying to have our rights enforced!

Members of the House Judiciary Subcommittee on the Constitution and Civil Justice need to hear from NCIL members around the country about the dangers of this bill. These three bills would create additional barriers to filing a complaint under the ADA, making the law – and our rights – even harder to enforce. Please contact the House Judiciary Subcommittee on the Constitution and Civil Justice at (202) 225-3951 and tell them why you oppose these bills! Then send an email to Chairman Franks and Ranking Member Cohen’s staffers. We have drafted a letter (below) for your convenience, and please feel free to change as necessary. You can contact Chairman Franks’ Deputy Chief Counsel, Zachary Somers, at zachary.somers@mail.house.gov. You can contact Ranking Member Cohen’s Legislative Director, Matthew Weisman, at matthew.weisman@mail.house.gov. In light of the hearing on Thursday, please contact them as soon as possible!

Draft letter to the House Judiciary Subcommittee on the Constitution and Civil Justice:

Dear (Member)

I’m writing to you today to express my opposition to H.R. 3765, the ADA Education and Reform Act of 2015. This bill, along with H.R. 241 (the ADA Compliance for Customer Entry to Stores and Services (ACCESS) Act of 2015) and H.R. 4719 (the Correcting Obstructions to Mediate, Prevent, and Limit Inaccessibility (COMPLI) Act) poses significant risks to the people with disabilities and our ability to access our communities.  [Read more…]