the advocacy monitor

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

Cast Your Vote for ADAPT to Help Fight Attacks on Healthcare

Our friends at ADAPT have been fierce partners in the fight to protect the Affordable Care Act (ACA) and save Medicaid. Sadly, we know this fight is far from over, and we will continue to need ADAPT’s direct action and activism.

ADAPT Logo - Free Our PeopleCREDO has nominated ADAPT as one of three grant recipients of their October grant program. The amount of grant money they receive depends on how many votes ADAPT gets by October 31, and they are currently in last place. ADAPT needs your help!

Cast your vote:

By simply submitting your email address, you can help ADAPT to continue their critical role in this important fight. Then, we ask that you, too, share this link with your networks so that everyone you know can vote for ADAPT!

Information Alert: The FY 2018 Federal Budget

Yesterday night the Senate passed their FY 2018 budget resolution with a 51-49 vote. What comes next could have a big impact on our community, and will require us to once again ramp up our advocacy efforts. That’s because the main goal for this year’s budget is to set the stage for a major tax cut bill, which will increase the deficit and lead to dangerous cuts to Medicaid, Medicare, and other programs our lives and independence rely on.

NCIL logo - National Council on Independent LivingThe Senate budget resolution is a plan – not a law – so the budget itself doesn’t make changes to funding or the tax code. Rather, the budget resolution provides instructions that pave the way for Congress to pass their tax cut legislation using the reconciliation process, meaning it will only require a simple majority of votes. We’ve seen the GOP’s tax reform priorities (link below), and it’s clear that the Senate intends to use this process to pass tax cut legislation that will benefit the wealthy and profitable corporations while significantly increasing the federal deficit and negatively impacting everyone else.

Tax cuts don’t pay for themselves. The budget resolution will increase the federal deficit by $1.5 trillion, and it assumes over $5 trillion in cuts to services over the next decade. With numbers like these, no programs are safe. Congress has shown us time and again that they are intent on slashing Medicaid, and unsurprisingly, their tax plan will provide them with the opportunity to do just that. The Senate budget calls for trillions of dollars in cuts to mandatory programs (which includes programs like Medicaid, Medicare, and Social Security). Much of the remainder will come from non-defense discretionary funding, which includes other programs we rely on like the Independent Living Program, housing assistance, and education. If this tax plan becomes law, people with disabilities, poor people, and other marginalized communities will be significantly harmed, while wealthy people and corporations reap the benefits.

Late-night changes to the budget resolution were intended to reconcile the Senate and House budgets, and the House is expected to vote on and pass the same budget next week. That said, the budget is just the first step. Our goal is to stop the tax bill that will lead to cuts to the programs people with disabilities need.

We will continue to monitor these efforts as they progress. We’ll continue to follow progress on the tax bill as well as appropriations, and we will keep you informed of any new developments. One thing is for sure: a plan that will result in trillions of dollars in cuts to the programs we rely on is not good for our country. But the disability community has demonstrated that we are powerful, and together, we will work to stop this.

For additional information:

Action Alert: Share Your Stories from Hurricanes Harvey and Irma

NCIL has partnered with Portlight Inclusive Disaster Strategies, Inc to determine what challenges and problems people with disabilities faced in shelters, with transportation and evacuation, with housing options after the storm, in applying for benefits, and problems with any other interactions with emergency services. (Note: we are also interested in Hurricane Maria’s impact, but due to lack of communication abilities with the affected territories and ongoing response work, in which NCIL is currently engaged, we do not anticipate being able to complete a report at this time.)

NCIL logo - National Council on Independent LivingWere you in a shelter and experienced problems or mistreatment? Have you had difficulty finding housing options after the storm or applying for FEMA or other benefits? Did you experience difficulties in arranging transportation, services during and after the storm, or arranging evacuation? We want to hear from you. These stories will be scrubbed of identifying information and be used as data in reports on what problems people with disabilities experienced, and to determine what can be done to mitigate these problems so that they do not arise in future disasters.

If you are interested in sharing your stories or have any questions about this initiative, please send them to Sarah Blahovec at by October 31st, 2017.

One More Opportunity to Sign on to NCIL’s Letter Opposing the ADA Education and Reform Act

Thank you to those of you who have already signed on to NCIL’s Letter Opposing the ADA Education and Reform Act (H.R. 620). For those of you who did not sign-on the first time around, we are opening the letter back up to allow for additional signatories. We are hoping for AT LEAST 150 additional organizations to sign on, so please spread this request far and wide!

NCIL logo - National Council on Independent LivingAs a reminder, H.R. 620 was introduced by Representative Ted Poe of Texas. 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.

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’s response to their letter was sent to Representatives Paul Ryan (Speaker of the House) and Nancy Pelosi (Minority Leader).

We are looking to add additional signatories to this letter, so we are opening it back up. We strongly encourage you to add your organization as a signatory! The deadline to sign on is Wednesday, November 1, 2017.

Please join us as we fight this dangerous bill.

What I Learned Participating in Direct Action Against Healthcare Cuts

By Anna Phearman, NCIL Policy Intern

“Hey Mom! I’m just calling to let you know that I am okay, but I’ve been arrested.” Just the call you want to get from your twenty-year-old daughter, right? As it turns out, my mom was far from thrilled by this news. It took some time, explanation, and several rounds of, “No Mom, I didn’t actually go to jail, this is the equivalent of a speeding ticket,” but, eventually I was able to convey that this arrest was much more than the act of a rebellious teenager. It was a growing and learning experience. It was me (and 181 others) standing up for something I am deeply passionate about: healthcare as a human right.

Anna Phearman, Kings Floyd, and Hindley Williams wait to be processed after being arrested at the ADAPT Action against the Graham-Cassidy Healthcare Bill. Anna and Kings hands are cuffed with zip ties. Photo credit: Play and Ideas.

Photo credit: Play and Ideas.

You might ask how on earth you can learn something at a protest (of all places?!). I, for one, thought the very same thing until I participated in an ADAPT protest of the Graham-Cassidy bill.

The reality is that during this protest and the events following, I learned more than I ever have in a classroom. I learned what it means to be caring while watching people pass around snacks to complete strangers upon hearing that they were hungry. I saw activists sharing water and personal stories alike, and learned the strength of commonalities. Differences didn’t matter; no matter the ability, age, race, or religion, there was a sense of togetherness and caring for others. I learned what it means to be passionate, truly passionate, through people who had journeyed from all around the country, scraped up money for travel, taken days off work, and woken up at 4:00 a.m. in order to protest and make visible just how much their healthcare matters to them.  [Read more…]

An Update from the NCIL Assistive Technology Subcommittee

Today, there are high tech devices everywhere that are helping people to stay connected, be more independent and experience a higher quality of life. There are also resources that can help people afford the purchase of assistive technology (AT) including items such as home or vehicle modifications, hearing aids, computers, scooters, smart phones and even adaptive sports equipment.

People benefit from learning about a full range of resources and funding options that can help meet their needs. A person’s need for assistive technology is an opportunity for opening dialogue around their choice of AT and how to afford what best meets their needs. Are there ways for the person to increase their income through employment opportunities or to change their spending or increase their savings? Is there funding that will provide AT for employment? Are there work supports that can help a person earn and save money towards their purchase?  [Read more…]

New Video: Disability Advocates Improve Their Community for All

“Stoplights Don’t Stop Us!” tells the story of people with disabilities in Emporia, Kansas, who advocated for change in their community that enhanced their ability to participate. The video is also available with audio description.

The consumers carried out their work as part of a project conducted by the Research & Training Center on Community Living (RTCIL). The Building Capacity for Full Community Participation research team partnered with eight Centers for Independent Living around the country to provide CIL consumers with tools for making community change.

You can learn more about this process for making change in RTCIL’s free publication: Your Action Planning Guide for Promoting Full Community Participation Among People with Disabilities: A Resource for Independent Living Centers and Other Community-based Initiatives” (PDF).

Publication of Waymo Safety Report on Self-Driving Cars

A Message from Waymo

Waymo (formerly the Google Self-Driving Car Project) published its first Safety Report for our fully self-driving technology. Safety is at the core of Waymo’s mission and we believe our technology could save thousands of American lives now lost to traffic crashes every year.

Waymo LogoIn the Report, we detail Waymo’s work on ― and our commitment to ― safety. This overview of our safety program reflects the important lessons learned through the 3.5 million miles Waymo’s vehicles have self-driven on public roads, and billions of miles of simulated driving, over the last eight years. The U.S. Department of Transportation (DOT) recently issued updated federal guidance for autonomous vehicles, Automated Driving Systems 2.0: A Vision for Safety, and the Waymo Safety Report also contains information responsive to DOT’s guidance.

While there is a lot of promotion of self-driving cars these days, there is less discussion about the work that goes into making them capable, reliable, and safe. As the first company to put a fully self-driving car on the road without a driver, in 2015, Waymo has had to write its own playbook. That is why we use a safety-by-design approach ― discussed at greater length in the Report ― that informs everything Waymo does and affects every part of our cars, every step of the way.  [Read more…]

Reminder: Send NCIL Your Resources to Help Fight Medicaid Cuts

The NCIL Healthcare / PAS Subcommittee is working to gather resources to help Centers for Independent Living (CILs) fight cuts to state Medicaid programs. If you have fought proposed Medicaid cuts in your state, or if your state has implemented cuts, we would like to hear from you.

NCIL logo - National Council on Independent LivingWe are looking for:

  • Resources you have developed or existing resources you have identified to assist with your advocacy, e.g. data partners (such as universities), other community-based organizations (CBOs), legal aid, and any other partners. Please be as specific as possible.
  • Data or studies from your state (or nationwide) that have supported your advocacy efforts to prevent cuts.
  • Data or other information from your state on outcomes, if cuts (or limits) have already been implemented. Please tell us what was cut / limited (Non-Emergency Medical Transportation, Non-Medical transportation, dental, DME, adult briefs, etc.). Did the state take any action, e.g. restore any of the benefits?
  • Information about innovative demonstration projects in your state that used Medicaid dollars and resulted in positive health outcomes, increased community integration, nursing facility diversion, or another result?
  • Information about other effective strategies you have utilized to prevent Medicaid cuts.

Please share your experiences and resources with us by sending this information to ( We hope that by capturing this information, we can make more resources available to CILs around the country that are fighting similar battles. Thank you!

Disability Mentoring Initiative Request for Proposals

Partners for Youth with Disabilities, Inc. (PYD), a Massachusetts-based nonprofit organization with national impact, requests proposals from non-profit organizations to become a collaborator within the Disability Mentoring Initiative (DMI). One or two new collaborators will be chosen to participate in DMI for a period of one year and nine months (January 1, 2018-September 30, 2019) and will receive training and support.  [Read more…]