the advocacy monitor

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

Civil Rights & the ADA

An Update from the NCIL Mental Health Civil Rights Subcommittee

This year, marking the 25th anniversary of the passage of the Americans with Disabilities Act (ADA), gives us much to celebrate. While the ADA has strengthened civil rights protections and increased accessibility to some public transit and public accommodations (among other things) it is far from perfect. The provisions relating to employment haven’t greatly increased the number of people with disabilities anywhere near as much as we would have hoped. Those of us who need access to print and/or electronic materials can tell you that said provisions are often disregarded and unnecessarily difficult to remedy or enforce.

In addition, there are other groups within the disability community whose civil rights either weren’t included in the original law and/or have been weakened by subsequent regulations, interpretations and court decisions. While the amendments to the ADA (passed as the ADA Amendments Act in 2008) brought some clarification and relief, they simply couldn’t be expected to fix all concerns. For example, parental and other civil rights issues concerning people with mental health disabilities are largely unaddressed by the ADA and its subsequent amendments.

One of the things that the ADA accomplished was to bring the disability community together as had not happened previously. One of the reasons why this happened was that the disability community put people with disabilities first. To a great extent, however, this hasn’t happened specifically for people with mental health disabilities. Too often, fear and discrimination prevail even though mental health disabilities are the most common type of disability – half of Americans can expect a diagnosis during their lifetime. And, people with disabilities, including those diagnosed with mental health disabilities, are more likely to become victims than perpetrators of violence.

Stop Psychiatric Profiling Logo - Black TriangleOn 4 June, Representative Murphy introduced H.R. 2646 “To Make Available Needed Psychiatric, Psychological, and Supportive Services for Individuals with Mental Illness and Families in Mental Health Crisis, and for Other Purposes” (this was listed as the official title of the bill as introduced). As of this writing, the bill text has yet to be made available by the Government Printing Office. We understand, however, that this bill contains many of the provisions that threatened civil rights contained in the bill Representative Murphy introduced in the previous Congress, which did not pass. Provisions in the previous and current bills threaten privacy rights and increase the use of forced treatment in the community, among other concerns. NCIL opposes any legislation or administrative action that continues or strengthens denial of rights based solely on a diagnosis or disability and any deprivation of liberty based on disability rather than criminal activity. We will, of course, provide updates on the bill as it moves through Congress and are already working vigorously to oppose this bill.

NCIL’s Mental Health Civil Rights Subcommittee meets monthly via teleconference and also maintains an active page on Facebook. Please contact us through NCIL’s website or via Facebook if you are interested in helping with our work.

Nominate a White House Champion of Change for Disability Advocacy Across Generations

Source: Maria Town, Associate Director for Disability Community Engagement in the White House Office of Public Engagement

This year marks the 25th anniversary of the Americans with Disabilities Act, a landmark civil rights law that promises equal access and equal opportunity — regardless of ability. It secures each person’s right to an independent life, and it enables our country and our economy to benefit from the talents and contributions of all Americans. The ADA’s legacy can be seen everywhere, whether you’re using a curb cut as you cross the street, using a sign language to catch every lyric at a concert, or receiving reasonable accommodations to do your most efficient work possible. While the Federal government has led many efforts to implement the ADA to the fullest extent possible, much of the success of the ADA is due to the persistence of long-time state and local disability advocates who have advanced inclusion in their communities.

Despite the many successes of the ADA, non-discrimination, full inclusion, equal opportunity are still not a reality for many individuals with disabilities. Thankfully, in addition to the of these initial ADA advocates, there are numerous young Americans with disabilities who are working to uphold and expand the spirit of the ADA whether it’s getting disability history taught in their colleges or ensuring that social media is accessible. That’s why we’re asking you to help us identify and honor both long-time local disability rights advocates and young leaders with disabilities who are dedicated to disability advocacy and advancing the legacy of the ADA for the next 25 years to come.  [Read more…]

NCIL Partners with Disability Visibility Project for Our ADA Stories

By Alice Wong

It’s less than 2 months until the 25th anniversary of the Americans with Disabilities Act on July 26, 2015!

The Disability Visibility Project is proud to partner with the National Council on Independent Living and the Institute for Educational Leadership for the #OurADAStories social media campaign.

Purpose: To celebrate the rich diversity of the disability community and the impact of the ADA on our everyday lives and activities.

Example Tweet by Alice Wong @SFDirewolf - The ADA provided a foundation. W/o it, I wouldn't be able to advocate for access 'beyond code' #OurADAStories #ADA25  (Image of  univerally designed horizontal elevator buttonsThe Disability Visibility Project invites people of all ages to submit a photo or message from now to July 26th. Some things to consider when thinking about your ADA story:

  • What does advocacy, disability rights, and the disability community mean to you?
  • How has the ADA impacted your life and society in general?
  • What are the good, bad, and ugly aspects of the ADA? What is the unfinished business of the ADA?
  • How do your cultural identities (e.g., race, language, gender, gender identity, age) impact your disability or vice versa?
  • What does the future of disability rights and the lived experience of disability look like?
  • What can we learn across generations within our community?  [Read more…]

An Update from the NCIL ADA / Civil Rights Subcommittee

This year, we celebrate the 25th Anniversary of the Americans with Disabilities Act. As we celebrate the victories, we also need to continue the fight for our civil rights. This year, the ADA Civil Rights subcommittee has been working hard.

The EEOC has proposed a regulation that allows employers and their health plans to require medical disclosures that would otherwise be protected by the ADA if part of a wellness program. The proposed rule allows employers to charge significantly higher premiums for health insurance if a person declines participation. To comment on the proposed rule search for ID: EEOC-2015-0006-0001 at regulations.gov. The deadline for comments is June 19.

In Washington and other states there are ADA Notification Acts and other efforts to limit our hard-won remedies. The national media has covered police mistreatment of citizens and we are working to ensure that police treatment of people with disabilities is included in that dialog. Subcommittee members have also been working to ensure that the rights of parents with disabilities are protected.

Below, Ted Jackson reports on the efforts of Californians to prevent enactment of bills limiting remedies under the ADA and state law.

CFILC, in partnership with our members, was able to organize about 50 to the Assembly Hearing today regarding the Access Bills.

  • AB 52 did not have the necessary votes to get out, so it has been held in committee as a 2-year bill.
  • AB 54 was amended to be just a small tax credit bill.  [Read more…]

What Is It About Financial Abuse and Exploitation?

By Evie Curtis, Senior Vice President, Business Development, County Club Trust Company; Member of the NCIL Violence and Abuse Subcommittee

NCIL logo - National Council on Independent LivingThis isn’t your typical article on financial abuse and exploitation. You will not find tips on preventing this crime or a discussion on the latest schemes. Instead the focus is why – why this crime continues, why it is not prosecuted more, and why it continues to flourish especially with seniors. Do I solve these “whys” in this article? No. After 42 years in business taking care of other people’s money, I continue to search for answers.

In my financial career, I’ve been a banker, trust officer, trustee, executor, agent under health care power of attorney and agent under a financial power of attorney. I understand the tremendous responsibility that comes with assisting someone with his or her finances. My focus has always been on taking care of people and their financial security.

Forty years ago, we didn’t talk about this crime of financial abuse and exploitation. It probably existed but not to the extent we have now. It continues to grow and is too often hidden by its victims. Why won’t people come forward when they are a victim of financial abuse and exploitation? I believe it boils down to one or more of these areas: shame, fear, acceptance, and ignorance.  [Read more…]

Americans with Disabilities Act 25th Anniversary Celebratory PSA

ADA Legacy Project LogoOn the 100 day countdown to the 25th Anniversary of the Americans with Disabilities Act, the ADA Legacy Project is pleased to announce the release of a universally designed Public Service Announcement marking the 25th Anniversary of the ADA. This PSA highlights several events leading up to and including the signing of the ADA by President George H. W. Bush on July 26, 1990. Included in the PSA is a commemorative logo designed by Dan Wilkins, as well as historic black and white photographs provided by Tom Olin including a march, the Capitol crawl, and other demonstrations by persons with disabilities and their supporters.

The PSA is sponsored by ADA Legacy Project, which has been conducting a nation-wide tour of images and stories leading up the passage of the ADA.

The PSA was created and edited by Helen E. Walsh of Diverse Disability Media to be accessible to all by its utilization of universal design principles, using open caption and open audio description. The PSA additionally provides a long text description of the video for full detail. Ms. Walsh also announced that she is working on further ADA commemorative projects including a compilation of (30 seconds or less) smartphone videos from the community answering the question “How will you celebrate ADA25?”

This PSA and narrative can be accessed on the new YouTube Channel ADA 25 Celebrate!

For further information on ADA legacy Project, visit adalegacy.com.

#NoModernAsylum: NCIL Statement Against “Modern” Asylums

Many of you may be aware of two recent articles promoting a return to institutions for individuals with mental health disabilities and intellectual and developmental disabilities (“Improving Long-term Psychiatric Care: Bring Back the Asylum” in the Journal of the American Medical Association, and “The Modern Asylum” in the New York Times. Both of these articles recognize the extremely concerning rates of incarceration, homelessness, and hospitalization among individuals with disabilities; however, they operate on the extremely misguided premise that a return to institutions will somehow solve this problem.

NCIL, along with many other disability organizations who have been speaking out, know this argument is deeply flawed. Repeatedly, research and experience has shown that people live longer and better lives in the community. No past or future asylum had, or will have, the ability to provide the same level of individualized support. The high incidence of the problems mentioned in these articles points not to a need for reinstitutionalization, but rather it serves as a call to action to strengthen and fund the supports and services that individuals with disabilities receive in the community.

The disability community has loudly expressed our opposition with letters to the editor, public statements, and the Twitter hashtag #NoModernAsylum. Discontent with the current system does not mean it is time to return to a previously failed model. It is extremely disturbing that decades into the fight for deinstitutionalization, 25 years after the passage of the Americans with Disabilities Act, and 16 years after the Olmstead decision, the disability community is still facing these unfounded, misguided attempts to lock us away.

On Meringues and Milestones: Thoughts on NCIL’s Youth Pledge

By Jaggar DeMarco, NCIL Summer Intern

I love anniversaries because, as a child, it meant dessert. Every time my parent’s wedding anniversary was approaching, I eagerly awaited an oversized éclair or one of those fruit tarts. You know, those pastries beautifully arranged with the best fruit specifically chosen to top it. I ate them with the vigor only reserved for five year olds with bigger eyes than their stomach. I admit that those days where simpler. I would graciously award myself with sugar just because of a major milestone in someone else’s life.

Jaggar DeMarcoBut now as a college student, I award myself with pints of ice cream for making it through an exam. Since overindulgent desserts weren’t reserved for anniversaries, I needed a new way to think about them. Fortunately, as an intern with NCIL, I was able to find a new meaning for anniversaries.

This year we are celebrating the 25th anniversary of the Americans with Disabilities Act. As a 21 year old individual with a disability, I have grown up since the implementation of this historic legislation. While not always aware of it, there were great leaders of the disability rights movement that made all of this possible. And now, I feel, as if, it is my turn to learn the fundamentals of our movement and eventually take charge.

That is why it has been such an awarding experience working on the ADA Youth Pledge for NCIL. The theme of this year’s Annual Conference is Generation ADA: Rise Up! It is our belief that the generation of young advocates born since the passage of the ADA need to be present at our conference. This can only assure that we can both celebrate the past 25 years and catalyze a future.

The ADA Youth Pledge‘s mission is to make sure that our young leaders make it to this year’s conference. We are asking for member organizations and allies to make this pledge and post it to their social media accounts. By having a cross-generational movement, we can ensure a sustainable future.

So now anniversaries mean a lot of different things to me. They mean celebrating the past and reflecting on our struggles. Anniversaries mean looking forward to the next great milestone and making sure we have the tools necessary to make it there. But if anyone wants to share one of those desserts with me, find me. I know a place.

Action Alert: Preserving Employee Wellness Programs Act Threatens to Weaken ADA

The Preserving Employee Wellness Programs Act (H.R. 1189) is being considered in the House as a measure to clarify the rules regarding employer wellness programs, and the Senate has introduced an identical bill. This legislation has the potential to be extremely harmful to individuals with disabilities, because it would make it significantly easier to discriminate against employees with disabilities.

NCIL logo - National Council on Independent LivingH.R. 1189 would weaken the Americans with Disabilities Act (ADA) by narrowing privacy protections for individuals with disabilities whose employers have employee wellness programs. Companies would be allowed to impose harsh penalties on employees who refuse to disclose personal medical information, and individuals who do participate in wellness programs may potentially be penalized for failing to meet certain standards, even if they are not able to be met because of a disability.

Congresswoman Slaughter (D-NY) and House Democratic Whip Hoyer (D-MD) released a joint statement against this legislation, calling it a “clear attack on Americans’ privacy” and stating that it would put the ADA’s protections at risk for workers and their families. NCIL signed on to a letter (PDF) the Consortium for Citizens with Disabilities (CCD) submitted to President Obama, and NCIL staff has joined other disability rights organizations in several conversations with the Administration and Congress.

The House Education and the Workforce Committee held a hearing on H.R. 1189 on Tuesday, which is available to view on YouTube. Additional information can also be found at the Committee’s website.

Last week the EEOC sent a Notice of Proposed Rulemaking to the White House Office of Management and Budget, and it is supposed address the interaction of the ADA and the Affordable Care Act (ACA) with respect to these wellness programs. While the EEOC has brought lawsuits against several employers who substantially penalized employees who wouldn’t provide personal medical information, there is significant pressure to allow wellness programs to continue functioning without having to adhere to the ADA. Once the EEOC’s NPRM is approved, it will be published in the Federal Register for a public comment period, and it’s important that we stay on top of this!

We need to make sure our voices are heard, so once the NPRM is published, get your comments in. Also, make sure to contact your Representative and let him or her know that you oppose H.R. 1189. This bill will take away some of the protections that our community has fought so hard for, and we have to act on this now!

Women’s History Month Twitter Chat with the National Council on Disability

Twenty-five years after Americans with Disabilities Act was passed, the ‘ADA Generation’ is now entering adulthood and, as such, parenting is the natural next step in enforcing and ensuring the protections afforded by the ADA. On Friday, March 27 at 3pm EST join the National Council on Disability for a Twitter chat as we celebrate Women’s History Month by recognizing mothers with disabilities and discussing ways that we can better support women with disabilities and their families. Use the Hashtag: ‪#‎wmnhistNCD.

#wmnhistNCD on Facebook