the advocacy monitor

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

Healthcare & Community Living

Rural Institute Seeks Assistance Promoting Participation in Study on Pregnancy and Disability

Source: Rural Institute, University of Montana

Dear CIL Director:

With funding from the National Institutes of Health, researchers from the University of Montana, the University of Virginia, and the University of Missouri are conducting a qualitative interview study on the risks and facilitators of unintended pregnancy in women with disabilities.

University of Montana LogoWe request your urgent support in disseminating information about this study to your consumers and other organizations and allies in your network.

Can you please make these flyers available to potential participants by doing a direct mass mailing to your consumer list, posting it in your center, and disseminating the information through your newsletters, social media, and email distribution lists? And of course, many more creative ways you may use in your CIL. Please see below for additional information about the study or contact Rosemary B. Hughes at
[Read more…]

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.

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…]

Update: Tax Bill Moves to Conference – Keep Taking Action!

On Monday we sent an alert about the Senate passage of the Tax Cuts and Jobs Act. At that point, it was unclear whether the House would approve the Senate’s version of the bill or go to conference to resolve the differences between the two bills. Monday night the House approved a motion to go to conference, and the Senate approved a similar motion last night. Very soon, selected members of the House and Senate will work together to reconcile the differences between their bills.

A NCIL Member holds a sign that reads "Justice Not Just Us" at the 2017 Annual Conference on Independent LivingWhat this means is that where there are differences between the two bills, any provision in either version can be included in the final bill. Problems that were only in the House bill, like the elimination of the medical expense deduction and the credit for businesses to become more accessible, may still end up in the final bill.  And problems that were only in the Senate bill, like the repeal of the Affordable Care Act’s individual mandate, may also end up in final bill.

But regardless of which of the conflicting provisions end up in the final bill, one certainty remains: as a whole, both of these bills will give huge tax cuts to rich people and corporations while putting the programs people with disabilities need in jeopardy. Both bills would add $1.5 trillion to the deficit, resulting in hundreds of billions of dollars being taken from the programs we rely on. This bill is fundamentally flawed, and nothing that can be done in conference can fix it.

That said, going to conference means we still have time to take action! While much of the activity of the conference committee will happen behind closed doors, we will continue to follow the activity and provide updates. Because Congress has other time-sensitive issues to focus on – including passing a continuing resolution to keep the government funded past Friday- we will most likely not see votes on this until next week at the earliest. In the meantime, committee members have some big decisions to make, and they need to hear from their constituents! And, once the conference committee makes their decisions and votes on a final bill, both the House and the Senate will have to vote one more time on the new bill.

Take Action!

As we wrote in our last alert, this is not over yet. It’s critical that we keep the pressure on our members of Congress! Contact your Senators and Representatives and tell them to vote NO on the tax bill! It is important for all members of Congress to be contacted, but it’s especially important if they are conference committee members! The Democratic Senate appointees have not been determined at this point, but all House appointees and Senate Republican appointees can be found below. Things may move quickly, so there’s no time to waste. Call now!  [Read more…]

It’s Time To Check On Your Health Insurance! Open Enrollment Began November 1, 2017

This is an important time to take a close look at your health care needs and options. If you’re uninsured or looking for more affordable health insurance, the “open enrollment” period is the time to visit or your state’s marketplace or health insurance exchange. During “open enrollment”, private health insurance options can be reviewed and coverage can be purchased. People with low and moderate incomes may be able to get financial help to pay for health insurance coverage. Assistance to pay for premiums and other cost-sharing may be available for individuals and families, depending on which plan is purchased. If you get health insurance through your employer, Medicaid or Medicare, you are not eligible for this assistance.

The Consortium for Citizens with Disabilities (CCD) has developed a fact sheet on open enrollment (PDF) to use in promoting the open enrollment. Open enrollment begins on November 1, 2017.

  • November 1, 2017: Open enrollment begins
  • December 15, 2017: Open enrollment ends
  • January 1, 2018: Coverage begins

NCIL and ADAPT Announce the National Organizing Project

The National Council on Independent Living and ADAPT are proud to announce the National Organizing Project, a new effort to advance direct action in support of disability rights and community living.

NCIL logo - National Council on Independent LivingMade possible by the generous support of the Ford Foundation, the National Organizing Project creates a formal partnership between NCIL and ADAPT to support ADAPT chapters, promote direct action, and analyze and create policy to support people with disabilities. NCIL and ADAPT have a long history of cooperation that was strengthened during the #summerofADAPT, where ADAPT and NCIL worked together to advocate against healthcare reforms that would have had a devastating impact on people with disabilities.

The National Organizing Project will continue these advocacy efforts in four key areas:

  • Support for emerging ADAPT chapters
  • A train-the-trainer program to train new and emerging ADAPT chapters in non-violent civil disobedience
  • Completion of the ADAPT “Piss on Pity” documentary
  • A full time Community Living Advocate, based at NCIL’s office in Washington, DC, that will educate legislators on the benefits of community living and provide up-to-the-minute policy analysis for both organizations

NCIL is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands of organizations and individuals including: individuals with disabilities, Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.  [Read more…]