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

Healthcare & Community 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.

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.

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…]

CIL-NET Presents… A National Onsite Training: Community Integration – A Holistic Approach to the New Core Services for Transition & Diversion

CIL-NET Presents… A National Onsite Training:

August 22-24, 2017; Atlanta, Georgia

Register online or by using the printable registration form (PDF)

Registration Fee: $150.00

IL-NET Logo - CIL-NET + SILC-NETRegistration Deadline: July 31, 2017

The new core services for centers for independent living are a natural extension of the Independent Living philosophy. Assisting people to move out of institutions – or staying out of them in the first place – is some of the most important and impactful work that CILs do. But understanding the language of the law and helping to implement these services – and report them correctly – can be a real challenge. CIL-NET is organizing an interactive workshop in Atlanta to help us figure this out together – as a community. Our presenters will provide a lot of information and real-world guidance, but we need you to join us as we develop solutions and approaches to the new core services of transition and diversion across the country.

This highly interactive event provides both an opportunity to learn and to share what your CIL is thinking about the following areas:

  • What the law and final regulations say about institutional transition and diversion.
  • What falls under the new core services and what doesn’t.
  • The components of IL services that support both transition and diversion.
  • The differences and similarities between services that accomplish a transition or diversion goal.
  • Emerging definitions of “at risk.”
  • Variations in types of institutions and the implications for CILs.
  • Some of the effective existing practices and emerging practices in CILs.
  • How you can prepare for an early intervention with rehabilitation facilities as a diversion activity.
  • Key collaborations.
  • How to get to the right tables on long-term services and supports, Medicaid, housing, and more.
  • Strategies for developing relationships with community resources.
  • How to use the power of the Olmstead Decision and the ADA to have impact.
  • How to provide both transition and diversion outcomes through the existing core services and programs.
  • And much more.

[Read more…]

Urgent: Act Now To Protect Healthcare!

The Senate is now planning to vote to repeal and replace the Affordable Care Act before leaving for the 4th of July, which gives us just a couple of weeks to stop them. All efforts right now are critical! If a bill passes the Senate, Republicans’ dangerous idea of healthcare reform and their efforts to decimate Medicaid will become a reality. We need to stop this. Our lives are on the line.

Just like the House did last month, the Senate is working hastily and in secrecy on their version of Affordable Care Act (ACA) repeal and replace. While the exact changes the Senate plans to make to the House’s American Health Care Act (AHCA) are not certain, we do know that the changes being talked about are minor and the two plans will share far more in common than not. The Senate is still on track to make people pay more, have access to less coverage, and cut over $800 billion from Medicaid.

Take Action!

The outcome of this vote will likely come down to one or two key Senators, so we need to do everything we can to get those “NO” votes. The list of priority Senators is below. If you are in one of those key states, please, set up a meeting with your Senator’s staff. If you can’t meet with them (or even if you can), call them, and follow up with an email. You can reach your Senators by calling the Capitol Switchboard at (202) 224-3121 and asking the operator to connect you. And then, do it all again tomorrow. They need to hear from us regularly!

If you’re not in one of the key states, you can still take action! We need everyone from all states to let the Senate know that we see what they’re doing and demand that they hold hearings on the bill! Call the Senate HELP Committee at 202-224-5375 and the Senate Finance Committee at 202-224-4515 and demand that they hold hearings before bringing the bill to a floor vote!  [Read more…]

“Don’t Cap My Care” Medicaid Rally in DC; Take Action at Home!

The Senate is at home this week working on a draft of their version of a healthcare repeal bill. This is a critical time to make sure they hear the concerns of people with disabilities! We hope you are making sure to meet with them and taking action (for more information, please see last week’s alert).

NCIL logo - National Council on Independent LivingThe American Health Care Act previously passed by the House of Representatives would cut Medicaid funding by over $800 billion. These cuts would be detrimental to people with disabilities around the country. In response to these proposed cuts, and to make sure the Senate thinks twice about accepting the House’s proposal, NCIL and a number of other disability and civil rights organizations (ACLU, ASAN, AUCD, ANCOR, CPR, The Arc, and NHeLP) will be co-sponsoring a “Don’t Cap My Care” Medicaid Rally in Washington, D.C. on June 6. This event will be attended by disability advocates and members of Congress, and if you are in the D.C. area, we hope you will attend! You can find more information at the event web page or at the Facebook event page.

For those of you not in the D.C. area, we hope you will consider hosting your own rallies or other actions. If you do, please let us know what you have planned. Please email information about your event (and pictures, if you want to share) to NCIL Policy Analyst Lindsay Baran at Remember, action over the next week is essential. We need to make sure Senators around the country hear from their constituents with disabilities that Medicaid per capita caps are cuts, and cuts to Medicaid are unacceptable!

Healthcare Update: CBO Score Released – Take Action Over the Memorial Day Recess!

Earlier this week the Congressional Budget Office (CBO) released their score (PDF) of the updated version of the American Health Care Act (AHCA) that passed the House earlier this month. Unsurprisingly, it estimates that the bill would still cut over $800 billion from Medicaid. In addition, 23 million fewer people would have access to health insurance than under the current law.

35th Anniversary Logo: NCIL – National Council on Independent Living. Celebrating 35 Years of Advocacy. Graphic features party candles.We have long understood that this is a dangerous bill for people with disabilities. It would slash Medicaid funding, eliminate the enhanced Federal funding for the Community First Choice Option, increase healthcare costs for people with disabilities, and decrease access to coverage (see more in our May 5 and May 2 Action Alerts). These changes mean fewer home and community-based services (HCBS), higher premiums, and more out-of-pocket costs. For some people with disabilities, they mean being forced into institutions, or even death.

Take Action Over the Memorial Day Recess!

The House failed the disability community when they passed the AHCA. But, healthcare reform now lies with the Senate, and Republican leaders and staff will be working on a draft of their healthcare bill over the recess. It’s important that they hear from their constituents with disabilities when they are back at home for recess next week (May 29-June 2)! Even though the AHCA passed through the House, it was a very close vote, and we know that every Republican “no” vote was a result of the advocacy efforts going on around the country. We need to keep up the pressure to make sure our Senators know why the disability community opposes the AHCA!

Individuals: Meet With Your Senators!

Now is the time to get some more face-to-face time with your Senators. Make an appointment with your Senators while they’re at home so you can voice your concerns in person. Tell them the many ways that the AHCA will hurt people with disabilities. In addition to meeting with your Senators, make sure to call them, Tweet them, attend Town Halls (visit and protests, and take every opportunity you’re able to educate your Senators on the dangers ACA repeal and Medicaid per capita caps pose to us!

CILs: Invite Your Senators to Visit Your Center!

Inviting your members of Congress to visit your Center for Independent Living is a great way for them to learn about the vital work CILs do in their communities and hear directly from their constituents with disabilities. Contact your Senators now and invite them to visit your CIL during the upcoming recess! Make sure to coordinate with staff and consumers to ensure that your members of Congress are able to speak directly with some of their constituents who can speak to how ACA repeal and Medicaid per capita caps will impact their access to healthcare, their ability to work or live independently, and their freedom to live in their community. People with disabilities have the most to lose from ACA repeal and Medicaid cuts, and we need Congress to understand how harmful the proposed changes will be. Also, while they’re visiting, make sure to talk about funding for the Independent Living Program, because FY 2018 appropriations are just around the corner! Please see our recent budget alert for more information on the cuts the President’s budget proposes for Independent Living.

Disability Integration Act Introduced in Both Houses: Urge Your Senators and Representatives to Co-Sponsor this Important Legislation!

NCIL is excited to inform you that the Disability Integration Act (DIA) has been reintroduced in both the Senate and the House of Representatives! Senate Minority Leader Chuck Schumer (D-NY) introduced S. 910 in the Senate on April 7, and Representative Jim Sensenbrenner (R-WI) introduced H.R. 2472 in the House just last week, on May 16.

NCIL logo - National Council on Independent LivingIf passed, the DIA will establish new federal law that addresses the constitutional right of people with disabilities to live in the community. The DIA addresses the fundamental issue that people who need long term services and supports (LTSS) are often forced into institutions and lose their basic freedom and civil rights. This legislation will require states and insurance providers that pay for LTSS to reverse this institutional bias, provide community-based services first, and offer home and community-based services (HCBS) to people currently in institutions.

The DIA builds on the Americans with Disabilities Act, the Olmstead decision, and programs like Money Follows the Person and the Community First Choice Option. The DIA is the next logical step in the disability community’s fight to FREE OUR PEOPLE. For more information on the DIA, please visit and see the list of organizations supporting the legislation. See below for a list of current co-sponsors of the DIA and take action!

Take Action!

Now that the bill has been introduced in both the Senate and the House, we want to keep up the momentum! Please contact your members of Congress and tell them to co-sponsor this bipartisan, bicameral piece of legislation!

Senate: S. 910, introduced by Senator Chuck Schumer (D-NY) on April 7, 2017


  • Senator Tammy Baldwin (D-WI)
  • Senator Bob Casey (D-PA)
  • Senator Patrick Leahy (D-VT)
  • Senator Elizabeth Warren (D-MA)

House: H.R. 2472, introduced by Representative Jim Sensenbrenner (R-WI) on May 16, 2017


  • Representative Lisa Blunt Rochester (D-DE)
  • Representative Robert Brady (D-PA)
  • Representative Lacy Clay (D-MO)
  • Representative Steve Cohen (D-TN)
  • Representative John Conyers (D-MI)
  • Representative Danny Davis (D-IL)
  • Representative Peter DeFazio (D-OR)
  • Representative Diana DeGette (D-CO)
  • Representative Lloyd Doggett (D-TX)
  • Representative Sheila Jackson Lee (D-TX)
  • Representative Ted Lieu (D-CA)
  • Representative Gwen Moore (D-WI)
  • Representative Eleanor Holmes Norton (D-DC)
  • Representative Beto O’Rourke (D-TX)
  • Representative C.A. Dutch Ruppersberger (D-MD)
  • Representative Louise Slaughter (D-NY)
  • Representative Paul Tonko (D-NY)

Call For Stories: Voices of Pre-Existing Conditions

35th Anniversary Logo: NCIL – National Council on Independent Living. Celebrating 35 Years of Advocacy. Graphic features party candles.If you have a pre-existing condition or know someone who does, share your story and we will make certain the Senate hears it. You can either submit on Facebook at or submit privately by email at It does not have to be long, but personal stories make a difference.

Deadline for stories has been extended to Tuesday, May 30th.

Note: This project is separate from the #IAmAPreexistingCondition video project. Participate in one or both – all of our voices need to be heard!