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

NCIL Statement on Passage of the Tax Bill

The National Council on Independent Living strongly condemns the passage of the Tax Cuts and Jobs Act. We are appalled that the GOP-led Congress has passed a bill that so blatantly puts the interests of wealthy people and big corporations ahead of their own constituents. Despite fierce opposition from people with disabilities, the general public, and members of their own party, the GOP chose to pass a bill that puts the lives, health, and livelihoods of millions of people across the country at risk.

NCIL logo - National Council on Independent LivingAs a result of this tax bill, 13 million people fewer people will be insured, and those who can keep their insurance will see their premiums skyrocket. Because of the increase of over $1 trillion to the federal deficit, PAYGO will be triggered, resulting in cuts to vital programs like Medicare, Vocational Rehabilitation, and many others. And while Congressional action to waive PAYGO has been considered, it is not in any way guaranteed. Moreover, the huge increase to the deficit eliminates much-needed funding for programs people with disabilities rely on, and we can expect to see proposals for cuts to Medicaid, Social Security, housing, education, and more. As we’ve known all along, the passage of this bill is a major threat to disabled people.

We’ve also known that this bill is just the first part of a larger plan. GOP leadership has already said that next in their crosshairs are entitlements (including Medicaid, Medicare, and Social Security), and with that, they’ve made it abundantly clear that they’re going to continue pursuing an agenda that will further marginalize people with disabilities, other minorities, and poor people. Their goals are dangerous, their actions are shameful, and we will not let them accomplish this without a fight.

NCIL is grateful to every single advocate who took action on this bill. We cannot forget the many important wins we have had this year. Our community is strong. We have shown the world that we are a force to be reckoned with, and that we will not be silent when they threaten our rights and our lives. Take a breath, take care of yourselves and each other, and start organizing so we will be ready to fight off the next attack. There is nothing greater than being in solidarity with you all as we continue to fight beside you.

Deadline Extended: NCIL Needs Your Help Documenting the Impact of Electronic Visit Verification!

When the 21st Century CURES Act passed into law late last year, it included a provision requiring states to implement Electronic Visit Verification (EVV) systems. EVV systems vary by state, but they all entail electronic monitoring of personal care attendants (PCAs), home health care workers, and the consumers they work for.

A NCIL Member holds a sign that says "Resist Injustice"Prior to its passage into law, NCIL released a statement of opposition to EVV, and we continue to strongly oppose it. EVV is discriminatory, and it undermines consumer direction – a key tenet of the Independent Living Movement. EVV is a violation of the privacy of people with disabilities who use PCA and home health services. On top of that, it is expensive, burdensome, and less effective than traditional methods.

We have heard from people with disabilities around the country who are already beginning to feel the negative impact of this requirement. NCIL is committed to considering all available options to fight this harmful law, and in order to do so, we need your help!

Please share your experiences with us. Please answer the questions below, and share any other relevant information, by Friday, January 12, 2018. Send your responses to Lindsay Baran at

  1. Has your state implemented or begun to implement EVV?
  2. How does EVV work in your state? For instance, are they using telephonic timekeeping? Are they requiring the use of GPS tracking? Does the system involve random checks, or complex activity logs? Share the details with us.
  3. Have you been personally affected by EVV? For instance, have you been more restricted from accessing your community freely? Have problems with the system or technology delayed payments? Have attendants quit due to new burdensome requirements?

[Read more…]

Organizers Forum: #TaxOnDisability

  • Tuesday, December 19, 2017
  • 1:00-2:00 p.m. Eastern
  • RSVP

NDLA Logo - National Disability Leadership Alliance - Nothing About Us Without UsHear about the new tax plan being considered by Congress and what impact it will have on people with disabilities. Discuss the potential for organizing now and in the future to protect our communities.


  • Amber Smock, Director of Advocacy, Access Living and Convener, Disability Power for Community Integration
  • Kim Musheno, Vice President of Public Policy, Autism Society of America and Chair, Consortium for Citizens with Disabilities
  • Annie Acosta, Director of Fiscal of Family Support Policy, The Arc

[Read more…]

One Last Chance to Fight the GOP Tax Bill! Take Action Now and Participate in Monday’s Call-In Day!

The conference committee working to reconcile the House and Senate tax bills is close to an agreement, and we expect to see a conference report tomorrow. Both the Senate and the House will likely vote shortly after, with a Senate vote expected as soon as Monday or Tuesday and a House vote Tuesday or Wednesday. This schedule may change slightly, but either way this is our last chance to fight this dangerous bill. And even though the GOP may seem to have the advantage, this is NOT a done deal. We must keep our efforts up!

NCIL logo - National Council on Independent LivingTake Action Now!

Our Senators and Representatives are feeling the pressure, and some have hinted that they may not be on board. We need to keep pushing and making sure they hear from their constituents! Tell your members of Congress that their tax bill will hurt people with disabilities and cut the revenue needed to pay for programs we rely on. Tell them that tax cuts for the wealthy and big corporations shouldn’t be paid for by jeopardizing the programs their disabled constituents need!

  • Participate in Monday’s National Call-In Day! Find more information at the Facebook event. RSVP and share widely with your networks!
  • Call your Senators and Representatives DAILY and tell them to vote NO! Call the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY). Find their direct numbers and local office numbers at Contacting Congress.
  • Use Resistbot to turn texts into faxes, mail, or hand-delivered letters.
  • Fax your members of Congress (use to find their fax number).
  • Email, post on Facebook, or Tweet with information on Contacting Congress. Join in the conversation on social media using the hashtag #TaxOnDisability.

It is important to reach out to all of our members of Congress about this issue! That said, the Senate will be voting first and is likely our best bet for stopping the bill, so we have included below a short list of priority Senators.  [Read more…]

Bipartisan Money Follows the Person Bill Introduced: Sign the Letter of Support!

Yesterday Senators Portman (R-OH) and Cantwell (D-WA) introduced a bill to reauthorize the Money Follows the Person (MFP) demonstration program. The bipartisan legislation, titled the Ensuring Medicaid Provides Opportunities for Widespread Equity, Resources, and Care Act (the EMPOWER Care Act), would extend the MFP demonstration program through 2022.

NCIL logo - National Council on Independent LivingMFP was designed to help states transition people with disabilities from institutions into the community, and to assist states in rebalancing their long-term services and supports (LTSS) systems to increase access to home and community based services (HCBS). Since it began, 47 states have participated and over 75,000 disabled people have been liberated from institutions, and Centers for Independent Living (CILs) have played a critical role in that.

However, the program expired on September 30, 2016. While States can still use remaining grant funds through 2020, with no reauthorization or additional funding on the horizon, programs are being scaled back and will eventually end. In fact, the program expired last year and we already saw the number of new transitions decline. Reauthorizing MFP will provide additional funding for transitioning people with disabilities into the community, and it will continue incentivizing states to prioritize home and community based services.

Take Action – Sign the Letter of Support!

The introduction of this legislation is wholly due to the ongoing advocacy of the disability community, and it is a big achievement! We will continue to keep you updated on any progress or other advocacy opportunities related this bill. But for now, we need to show the Independent Living community’s strong support for this bipartisan effort! CILs, SILCs, and other organizations, please sign on to the letter of support.

Signatures are due by 12:00 p.m. Eastern on Monday, December 18, 2017.

Call for Workshop Proposals: 2018 Annual Conference on Independent Living

Resistance through Action - 2018 Annual Conference on Independent Living. Graphic features an arrow striking a heart over the letters "IL" and a target that replaces the "o" in "Mobilize"

July 23–26, 2018; Grand Hyatt, Washington, DC

Submit a workshop proposal

NCIL’s Annual Conference is the largest Independent Living event of the year. NCIL regularly hosts over 1,000 people, including grassroots advocates, CIL and SILC leadership, members of Congress, government officials, and representatives from other major organizations that work for justice and equity for people with disabilities.

NCIL’s 2018 Annual Conference theme is Mobilize: Resistance through Action. For over a year now, members of Congress and aggressive ideologues have tried their hardest to strip people with disabilities of their health and liberty. We have met these challenges head-on and will continue to do so. Some battles have been won, others lost. The goal of this year’s Annual Conference is to improve our strategy and cohesion. We are powerful, but we must share our resources, strategize, and train new advocates if we want to succeed in our efforts to protect our programs and secure the independence of people with disabilities.  [Read more…]

Holding the Department of Education Accountable: The Importance of Guidance Documents

By Rachel Bass, NCIL Fall Policy Intern

As an individual with disabilities, I have experienced challenges during my educational career. I experienced many ups and downs, and there were tribulations that I needed to overcome.

Rachel Bass Signs I Love You in ASLIn some instances, I was refused reasonable accommodations, such as an aide for my physical needs, note takers, interpreters, and other support services. These types of services were crucial for my success in school. Because the school denied me full accessibility in the classroom, every night, I would spend hours with my mother tutoring me just to complete my homework. This went on for a couple of years before I realized that I had to stand up for myself. At the young age of nine, when I attended a meeting to go over my individualized educational plan, I had to learn to stand up for myself for the first time. I told them that I was not being treated equally and requested equal access to my education.

There was another occasion when I was in 10th grade: I had to have an aide to help with my personal needs due to my physical disability. She behaved unprofessionally, inappropriately, and aggressively towards me on a daily basis. She would constantly take advantage of both my disabilities. Also, she would intentionally embarrass me because of my disabilities. For example, she became very manipulating and constantly would come up to my nose, pointing her finger directly at my face, yelling, “Do you understand me, yes or no!” repeatedly until I replied “yes” because I did not hear or understand what she was saying at first due to my deafness. She did not have a lot of patience to work with me as a deaf individual. I felt so humiliated because I did not know why she was so angry with me. I had no idea what she wanted to convey to me. She also took it upon herself to decide how much physical help I needed, regardless of the doctor’s note that was given to the administrators from my physical therapist. My aide would constantly force me to take out my own books from my backpack, even though it was against the doctors’ and administrators’ orders and caused me physical pain.  [Read more…]

University of Illinois at Chicago Seeks Research Participants Who Have Lived in Nursing Homes

The University of Illinois at Chicago is conducting a study with people with disabilities to identify and address participation disparities among people with disabilities.

A black and white photo of a person carrying a sign that reads "Institutions Aren't Solutions"Currently, they are collaborating with six Americans with Disabilities Act (ADA) Centers across the nation to learn about participation disparities experienced by people with disabilities who moved out of nursing homes. They are looking for 50 people with disabilities to help with the study. Participants will be asked to be part of one 90-minute interview to talk about their experience with living in the community after transitioning out of institutions.

In order to participate, you must meet the following criteria:

  • have a disability as defined by the ADA
  • have lived in an institution (e.g., public nursing home, institution for mental disease, intermediate care facility, or large group home)
  • age 18-64 currently or at the time of moving out of an institution
  • currently close to moving out of an institution OR have transitioned out of an institution within the past 5 years

All participants will receive a $25 gift card for completing the interview.  [Read more…]

Support NCIL While You Shop for the Holidays!

This holiday season, you can support NCIL while you shop! Shop for everyone on your list using NCIL’s custom link at

NCIL sincerely appreciates your continued support and commitment to the Independent Living Movement.

This holiday season you can support us while you shop! Shop for everyone on your list at You shop Amazon donates. Amazon Smile logo. Image of camera, stuffed toy, and handbag.

Assistance Animal Survey

The NIDILRR-funded Southwest ADA Regional Center is conducting a survey to learn more about the use of service animals and other assistance animals by people with disabilities in public settings.

The survey is open to US residents 18 and over who use a service animal and parents of a child with a disability who uses a service animal. The information gathered will be used by researchers to understand what access issues people may experience with their animals, as well as to develop and improve the information, support, and guidance needed for the community to improve access for assistance animal teams. These findings will also be used to improve the training and technical assistance that the Southwest ADA Regional Center provides to the public on this topic. All personal data collected in the survey will be kept anonymous and confidential.

For questions or additional information, contact Marisa Demaya at