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

Major Healthcare and Medicaid Updates: Keep Fighting!

The healthcare fight is heating up, and yesterday was a huge day. Yesterday, on the 18th anniversary of the Olmstead decision, Senate Majority Leader McConnell released the Senate’s healthcare bill, the Better Care Reconciliation Act of 2017. Read the bill (PDF) and summary. Also yesterday, disability rights group ADAPT staged a die-in at Senate Majority Leader Mitch McConnell’s DC office to protest the attacks on people with disabilities contained within the bill. The die-in received media coverage around the country and has energized disability advocates in DC and in the states to keep fighting, which is exactly what we need to do!


The Senate calls their bill the Better Care Reconciliation Act, but using “better care” in the title is a flat-out lie. As expected, the bill closely resembles the House’s American Health Care Act, and will still result in people losing health insurance, significantly increasing healthcare costs, and people with pre-existing conditions losing the protections we’ve been promised (primarily through continuing coverage requirements and states’ abilities to waive the Essential Health Benefits). But it also makes one major change that will leave people with disabilities worse off. The bill still changes Medicaid to a per capita cap system, but it slows the growth rate of the program starting in 2025. This means that Medicaid will start to experience major cuts immediately, but that those cuts will deepen even more beginning in 2025. This means even less money for states to fund the services and supports we need to stay in our homes and communities. This means more people with disabilities being forced into nursing homes and institutions. This means more members of our community dying.

Take Action!

We need people around the country to build on yesterday’s momentum and take action! We have included a list of priority Senators below, but this is important for everyone! Here are several ways you can take action:

  1. Follow ADAPT’s lead and hold a protest at your Senator’s office! CILs around the country have been organizing protests and similar die-ins in their states. Now that the bill has been introduced, it’s time to redouble those efforts.
  2. Call your Senator TODAY and demand they vote no on this terrible bill! You can reach your Senators by calling the Capitol Switchboard at (202) 224-3121 and asking the operator to connect you or by using this directory. You can find a sample script in our recent alert, but the main points you want to get across are that this bill will be harmful to their disabled constituents and they should vote NO on the Better Care Reconciliation Act. Call often, because they need to hear from us regularly!
  3. Contact your Senator using another method! You can also fax your Senator (use to find  your Senator’s fax number) or use Resistbot to have your texts turned into faxes, mail, or hand-delivered letters. If you’re on social media, make sure to find your Senator’s email address, Twitter handle, and other information through Contacting Congress.
  4. Set up a meeting with your Senator’s staff. Explain to them how harmful the cuts to Medicaid and other changes in this bill will be to their constituents with disabilities.
  5. Lastly, help ADAPT pay for their fines and other legal fees! Forty-three disability rights activists were arrested fighting for our lives. If you’re able, please donate to their legal fund. And spread the word!

Senate Republicans need 50 votes to pass the bill, which means they can only lose two Senators. We need to make sure they lose three! This bill fundamentally changes Medicaid and will disproportionately harm the disability community. This is our fight. Make sure our voices are heard!

Priority Senators:

  • Alabama: Shelby and Strange
  • Alaska: Murkowski* and Sullivan*
  • Arizona: Flake* and McCain
  • Colorado: Gardner*
  • Florida: Rubio
  • Georgia: Isakson
  • Indiana: Young
  • Louisiana: Cassidy*
  • Maine: Collins*
  • Missouri: Blunt
  • Montana: Daines
  • Nebraska: Fischer and Sasse
  • Nevada: Heller*
  • Ohio: Portman*
  • Pennsylvania: Toomey*
  • West Virginia: Capito*
  • Wisconsin: Johnson

* Top priorities

Breaking News: ADAPT Protesting NOW in Majority Leader McConnell’s Office – Take Local Action!

Right now, members of the national disability rights organization ADAPT are staging a die-in at Senate Majority leader Mitch McConnell’s office. The activists are protesting McConnell’s Senate healthcare bill, demanding he bring an end to the attacks on disabled people’s freedom we expect to see.

ADAPT Logo - Free Our PeopleThe Medicaid caps proposed in this bill and the resulting cuts can only lead to two outcomes for the disability community: people being forced into nursing facilities and other institutions, and people dying because they cannot get the services they need. The fact that this terrible bill is being released on the 18th anniversary of the Olmstead decision is an even further affront to the disability community!

Millions of disabled Americans will be harmed if this terrible law is enacted. McConnell seems intent on pushing the legislation through regardless of the cost to our community, so we need your help to fight it! We have fought too hard for our freedom to do nothing as the Majority leader and his cronies plot to take it away from us.

NCIL logo - National Council on Independent LivingPlease join the fight by doing the following:

  • Call the press and urge them to cover this story! Tell them about the ADAPT action, but more importantly tell them why Medicaid and healthcare are so important to you. Get them to report on all of the ways this bill will restrict our freedom and limit our lives.
  • ADAPT has put out a press release. Please feel free to use this as a template for a press release on behalf of your CIL or organization!
  • Call Senator McConnell’s office and demand an end to any legislation that caps or cuts Medicaid! The phone number for his DC office is: (202) 224-2541 and his Fax number is: (202) 224-2499.
  • Call your Senators and demand they not support any legislation that caps or cuts Medicaid! You can get a hold of them through the Capitol Switchboard at: (202) 224-3121.

Fight Cuts to Independent Living: Talking Points to Take Action

Appropriations subcommittees have been holding hearings over the past couple of weeks to begin finalizing their fiscal year 2018 (FY18) spending bills. Appropriations are high on the Congressional agenda, and we cannot let these decisions move forward without Congress hearing from the Independent Living community. Any funding cuts to the IL Program would be detrimental to CILs across the country.

The appropriations subcommittees have not released spending bills yet, but we have seen proposals from the Administration. The President’s May budget outline proposed major cuts to disability-related programs, including the elimination of the Part B funding to create a new “Partnership for Innovation, Inclusion, and Independence”. We have heard that this Partnership will not be considered by Congress; however NCIL still strongly opposes the proposal. On June 9, NCIL sent a letter of opposition to the House and Senate Appropriations Committees along with the Brain Injury Association of America (BIAA), the National Association of State Head Injury Administrators (NASHIA), and the National Association of Councils on Developmental Disabilities (NACDD), who represent the other organizations that would be hit with funding cuts by the creation of this Partnership.

While we know the final spending bill passed by Congress will be very different than the President’s proposal, we also know that Congress hopes to drastically decrease spending. Decreasing spending means there will be cuts, and some of those cuts will likely be to the programs and departments people with disabilities rely on.

As always, we need to fight against any cuts to the IL Program. But even if Congress proposes level funding again for FY18, it’s simply not enough. In order to meet the increasing demands on the IL Program, including carrying out the fifth core service and overcoming years of devastating cuts, the reality is that we need a significant funding increase. That’s why for several years now we have been asking Congress for a $200 million increase for the Independent Living line item. This number was arrived at after careful and thoughtful analysis of the needs of the IL community. Please see our FY2017 talking points for more information.

There’s a lot going on right now, and attacks on the disability community seem to be coming from all directions. But IL funding must remain a priority! Without adequate funding, CILs around the country will be unable to support people with disabilities to live independently in our homes and communities. We need to fight to protect IL funding and make sure Congress hears from the people who will be harmed by cuts. Please contact your members of Congress and tell them why the IL Program is so vital to you. If you work at a CIL, invite your Members of Congress to visit. Members of Congress need to hear directly from their constituents with disabilities to understand the importance of the services and supports CILs provide in their communities every day. Only by hearing from their constituents will Congress begin to understand the importance and the true value of the IL Program!

Sample Talking Points

Funding Increase:

  • The Independent Living Program critically needs an increase in funding. A $200 million increase would help to restore cuts, make up for inflation, meet the greatly increasing demand for services, and effectively carry out the recently added fifth core service (transition).
  • Disability rights and Independent Living have long been bipartisan issues. The Independent Living Program is an effective and efficient program that saves states and the federal government money.
  • Centers for Independent Living provide services to millions of individuals with disabilities each year including (but not limited to): peer support; IL skills training; information and referral; individual and systems advocacy; transition and diversion; assistance in securing accessible, affordable, and integrated housing; personal assistance; transportation; vocational and employment services; assistive technology; and youth services.
  • CILs save taxpayer dollars by helping people with disabilities remain or return to their homes and receive services and supports in their homes and communities.
    • From 2012-2014, CILs moved 13,030 people out of nursing homes and institutions, saving states and the federal government over $500 million.
    • A 2011 study by NCIL and the Rehabilitation Services Administration found that CILs were able to keep 85% of at-risk consumers out of institutions and move 30% of institutionalized consumers back into the community.

“Partnership for Innovation, Inclusion, and Independence” proposal:

  • The proposal results in a $57 million reduction for people with disabilities.
  • The proposal reflects a lack of understanding of the three line items involved, each which have distinct statutory requirement in different statutes.
  • Eliminating Part B funding to create this partnership would result in CILs closing and people with disabilities around the country losing their jobs.

Announcing: The 2017 NCIL Policy Briefing!

Register online.

June 29, 2017; 3:00 – 4:30 p.m. Eastern

NCIL is happy to announce our 12th Annual Policy Briefing.

NCIL logo - National Council on Independent LivingThis 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 2017 Day on the Hill! For those of you who will not be at the 2017 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 webinar. You must register by 12:00 Noon Eastern on June 29, 2017 to participate in the call.

  • Materials: This call will address the issues covered in NCIL’s Legislative & Advocacy Priorities Booklet, which is available in PDF, Word, or plain text.

Please contact Tim Fuchs at with any questions.

NCIL Presents: A Call with Senator Bob Casey on Threats to Healthcare, Medicaid, and Community Living for People with Disabilities

Thursday, June 22, 2017; 12:30 – 1:30 p.m. Eastern

** Registration for this call is now closed **

This Thursday, June 22 at 12:30 p.m. Eastern, the National Council on Independent Living (NCIL) will host a call with Senator Bob Casey (D-PA) to discuss the American Health Care Act (H.R. 1628), a possible Senate companion bill, cuts to Medicaid, and their impact on people with disabilities.

NCIL logo - National Council on Independent LivingEveryone is waiting to see how the Senate will react to the American Health Care Act, threats to cut Medicaid, and other proposed legislation that could be devastating to people with disabilities. Please join us to hear the latest news from Senator Casey and his Disability Policy Director, Michael Gamel-McCormick, including how you can get involved to protect access to healthcare for you and your consumers.

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.

Please contact Tim Fuchs at with any questions.

Trump Budget Cuts Social Security – An Update from the NCIL Employment and Social Security Subcommittee

Greetings from the NCIL Employment and Social Security Subcommittee! As we all know, we are in strange, uncharted political waters these days (to say the least). More than ever, it seems, we do not know what the future holds with regards to people with disabilities and the wonderfully diverse, vibrant, cross-cultural, and intersectional community they comprise and represent. Many of the programs we champion and support are in danger of being cut and thus many of our brothers and sisters, family members, community members, etc. are facing great uncertainty if not abject peril.

In these days of “fake news” and distorted facts, we encourage all NCIL activists to be well-versed regarding the President’s proposed budget, especially its designs on cutting Social Security despite assurances this would not happen. We know it is often difficult to make a salient and defensible argument to those who would seek to support these cuts without hard evidence backing up our assertions. The following article from The Hill sheds some great light and provides at least a layperson’s background to speak effectively to this important issue. As is the case with myriad issues we, as purveyors of the Independent Living Movement and all it entails, are often the strongest, most trusted voice when it comes to issues affecting the disability community locally, regionally, nationally, and globally. Our Truth is undeniable!

The New Healthcare Bill: Repeal ACA and Watch Millions Live Inhumanely and Inadequately

By Matthew Schwartz, NCIL Summer Policy Intern

Amidst recent headlines, healthcare has been for the most part left out of the news and public discourse. Members of Congress are using the Russia investigation as cover to repeal the Affordable Care Act (ACA) in favor of the American Health Care Act of 2017 (AHCA). Members of Congress are using this time to slip in their new healthcare bill, silently, so as to not alert the public to the dastardly affects the AHCA will have on millions of people nationwide.

Approximately 50 people are gathered for a Rally. Several people have signs that read No Cuts No Caps to Medicaid - ACLUThe ACA legislation has paved the way for better coverage and better rights for many; however, the disability community is one of many groups that will face serious harm if the AHCA is passed.

If the AHCA is passed, people with disabilities would face an inhumane lifestyle due to a lack of funds and the absence of proper Medicaid supports. People with disabilities will not be able to afford the necessary assistance or utilize crucial programs and as a result will be unable to live independently.

The proposed budget for the AHCA shows ignorance and a lack of understanding about the needs of the disability community. The proposed budget would make $72 billion in cuts to disability programs like Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). In addition, the President’s budget proposal would reduce spending on many other programs that are imperative for people with disabilities, including the Supplemental Nutrition Assistance Program (SNAP), the Children’s Health Insurance Program (CHIP), and Temporary Assistance for Needy Families (TANF). The budget would also make major funding cuts for housing, education, research, and many more essential programs. These cuts create the possibility that hundreds of Centers for Independent Living (CILs) across the country may close. Listed are just a few of the cuts that would be devastating for the many people who rely on these programs for assistance to live independently and with the freedom to make their own decisions.  [Read more…]

You Are Invited to An Advanced Screening of Defiant Lives At the Ed Roberts Campus!

Movie poster of the documentary “DEFIANT LIVES The Rise and Triumph of the Disability Rights Movement”. Image features pink-toned staircase with projected image of the face of a person with a disability behind bars and a wheelchair user.You are invited to a “Father’s Day” Private Advanced Screening of Defiant Lives, plus Q&A Panel with Director / Co-Producer Sarah Barton, Catherine Kudlick, Leroy Moore, and Marsha Saxton. The panel will be moderated by Lawrence Carter-Long.

Defiant Lives tells stories of the rise and fight of the disability rights movement in Australia, USA and UK from incarceration in nursing homes and other institutions to the social model of disability.

Sunday, June 18, 2017

6:00 – 8:30 p.m. at the Ed Roberts Campus (ERC) – Ashby Bart Station

3075 Adeline Street; Berkeley, CA 94703

* RSVP is required. RSVP by June 16 and request accessibility accommodations to: and with Berkeley SCREENING in the subject line.

  • ERC is a fragrance-free building. In consideration of individuals who are sensitive to chemicals in fragrances, please refrain from using scented products.
  • Defiant Lives is audio described and open captioned.
  • Sign Language Interpreters and CART will be provided; Venue is wheelchair accessible.

Invitation provided by: Defiant Lives Productions Pty Ltd, DREDF, WID, Paul K. Longmore Institute on Disability, AAPD, The CIL, DisBeat, Lights! Camera! Access! 2.0, and EIN SOF Communications.

Join Our Partner, the LEAD Center, for a Free Webinar – Guided Group Discovery: Paving the Way to Employment

LEAD Center Logo - www.leadcenter.orgDon’t miss this webinar on Guided Group Discovery: Paving the Way to Employment, in which we will share materials you can use to implement Guided Group Discovery through cross-system partnerships. You also will hear about the many pilot projects in which Guided Group Discovery has been used, and hear from implementers from the public workforce system and their disability partners.  [Read more…]

U.S. Senator Tammy Baldwin Introduces Legislation to Protect Rights of Disabled Airplane Passengers

Source: Senator Tammy Baldwin

Over 30,000 airplane passengers, including many disabled veterans, filed disability related complaints with airlines last year

U.S. Senator Tammy Baldwin (D-WI) today was joined by Senators Richard Blumenthal (D-CT), Tammy Duckworth (D-IL), Maggie Hassan (D-NH) and Ed Markey (D-MA) to introduce the Air Carrier Access Amendments Act. The legislation would protect the rights of disabled airplane passengers and close service gaps that passengers with disabilities frequently encounter in air travel. Last year over 30,000 airplane passengers, including many disabled veterans, filed disability related complaints with airlines.

“In order to keep America’s promise of full equality for all, we must work to break down the barriers that individuals with disabilities and our veterans face when they travel,” said Senator Baldwin. “Equal access to air travel ensures individuals with disabilities are able to participate in today’s economy and enjoy their travel opportunities.”  [Read more…]