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

Healthcare & Community Living

Information Alert: American Health Care Act Defeated – Thank You and Congratulations!

The afternoon of Friday, March 24, less than an hour before a vote on the American Health Care Act (AHCA) was supposed to take place, the bill was pulled! This is a huge blow to the GOP’s efforts to repeal the Affordable Care Act (ACA) and make drastic cuts to Medicaid. In fact, after the decision was made, Speaker Paul Ryan and President Trump both said that the ACA will remain in place for the foreseeable future.

This is a huge win! While there were many reasons for this outcome, one thing is certain: it would not have happened without your advocacy efforts. To those of you who called, emailed, Tweeted, attended town halls, met with your members, protested, held press conferences, got arrested, or wrote letters: thank you for your advocacy on this issue, and congratulations on a huge win!

We know that our community has a lot at risk right now, and we have other fights ahead of us. But for now, let’s celebrate the fact that we helped prevent major cuts to healthcare and Medicaid. The Independent Living community will keep fighting, and we’ve just proven that when we come together, we can accomplish great things!

House Vote on American Health Care Act Happening Today! Take Action!

The House is voting today on the American Health Care Act (AHCA), which repeals key pieces of the Affordable Care Act (ACA) and makes major cuts to Medicaid. Their goal is to pass the bill by 5:00 p.m. today! Watch the livestream.

Take Action!

Last minute changes were made to the bill to get more Republicans on board, one of which was an amendment to repeal the ten Essential Health Benefits. This is on top of earlier changes to allow a block grant option for Medicaid and Medicaid work requirements. Our best strategy right now is to reach out to the moderate Republicans in the House and tell them to vote NO on this terrible bill! Please see the list below of members who absolutely must hear from their constituents NOW. If your member is not on the list, call them anyway!


Earlier this week, House Republicans released an updated version of the American Health Care Act in the form of a manager’s amendment. This amendment allows states to choose a Medicaid block grant for their “traditional populations,” sunset Medicaid expansion this year, impose Medicaid work requirements on non-disabled beneficiaries, and it moved up the date of the Affordable Care Act (ACA) tax repeals.

These changes were intended to address some of the bill’s criticisms, but they didn’t do anything to increase access or affordability of coverage, and they also didn’t appease many House Republicans who still opposed the bill. Last night, additional amendments were introduced as a last-ditch effort to get more members on board, including an amendment to repeal the ten Essential Health Benefits.

These changes do nothing to remedy the harm the AHCA will cause, and in fact they actually further the risks to the disability community. Keep contacting your members of Congress. Your efforts are needed more than ever!  [Read more…]

ADAPT Occupies U.S. Capitol Rotunda to Protest Medicaid Cuts and ACA Repeal

Source: ADAPT

ADAPT’s modified American flag (which features the universal symbol of accessibility in white stars) is held high during NCIL’s 2016 March to the Capitol. US Capitol Rotunda can be seen in the background.On Wednesday, March 22, 2017, ADAPT occupied the Rotunda of the U.S. Capitol Building while protesting Congress’ and the Trump Administration’s efforts to eliminate Medicaid and Affordable Care Act (ACA) protections that are critical for disabled people’s survival.

People with disabilities have been overlooked and rendered invisible as Congress and the Trump Administration rush to repeal the Affordable Care Act and block grant Medicaid, with potentially devastating consequences. Fifty ADAPT members with disabilities from across the country are in the Capitol Rotunda demanding to be heard by their elected representatives.

Solidarity press conferences are being held concurrently in at least 30 states, with many states holding press conferences in several locations around the state.

Legislation currently proposed in Congress does not address the following critical healthcare essentials for people with disabilities:

  1. Insurance plans will not have minimal requirements. We may end up with coverage that doesn’t cover anything.
  2. No true protection for the pre-existing conditions that all persons with disabilities have. Currently, proposed legislation indicates that we will have less coverage, pay higher premiums, and have no protection without continuous coverage.
  3. There is no mention in the American Healthcare Act (AHCA) of the Community First Choice Option that is contained in the ACA. This eliminates a critical pathway for us to bypass nursing facilities so we can live in our own homes.
  4. Medicaid block grants mean significant cuts over time in Medicaid funding to states. To compensate, the federal government proposes giving the states complete freedom to cut services and supports as they see fit. This risks throwing us back to a dark age where people with disabilities die without healthcare, are warehoused in horrific conditions, or are subject to abuse and neglect. The states have a harrowing history of providing NO supports and services when regulations and funding requirements are entirely removed.

In response, we demand:

  1. That there be no block granting of Medicaid, no per capita caps.
  2. That our Congressional Representatives and Senators co-sponsor the Disability Integration Act.
  3. That the Community First Choice Option be preserved.
  4. That critical protections of the ACA be preserved, including but not limited to true protection from discrimination for pre-existing conditions.

ADAPT logo: Free Our People“First this administration came for the Muslims, then they came for the immigrants, then they came for the free press, and now they are coming for us” said Lopeti Penima’ani, from Utah “but we will resist all attempts to take us back to the dark ages.”

Collaborative on Health Reform and Independent Living Seeks Research Participants

The Collaborative on Health Reform and Independent Living, or CHRIL, is a 5-year research project funded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) to study how health reforms affect working-age adults with disabilities. The CHRIL is currently looking for individuals with disabilities to participate in their research efforts. During the months of April through July, CHRIL staff from the University of Kansas will be interviewing 20-25 adults with disabilities across the US about their experiences using and getting health insurance and / or Medicaid and Medicare. Participants completing an interview will each receive $40.

CHRIL is currently recruiting adults 18-62 years of age with disabilities and/or chronic health conditions. If you would like more information about participating in these interviews or would like to sign up, please visit:  You can also call toll free (1-855-556-6328) or email (

Organizer’s Forum March 21: Proposed Health Care Cuts and the Disability Community

  • Tuesday, March 21, 2017; 1:00-2:00 p.m.
  • Call-in: 1-515-739-1285
  • Passcode: 521847#
  • RSVP online

Learn what people are doing in cities and states around the country to fight cuts to Medicaid and home and community-based services, and get ideas for what you can do.


  • Senator Bob Casey, Pennsylvania (invited)
  • Amber Smock, Director of Advocacy, Access Living, and Founder of Disability Power for Community Integration
  • Alison Barkoff, Director of Advocacy, Center for Public Representation, and Co-Chair of the LTSS Task Force of the Consortium for Citizens with Disabilities (CCD)
  • Bill Henning or Shaya French, Boston Center for Independent Living

[Read more…]

Urgent Action Alert: Host a Press Conference at Your CIL to Oppose ACA Repeal and Medicaid Cuts!

Wednesday, March 22, is the day before the House is planning a full floor vote for the American Health Care Act (AHCA). That means we have less than a week to stop this terrible bill from passing the House and moving on to the Senate. We need you to take action now!

Please join hundreds of activists across the country by hosting a press conference to oppose the AHCA on Wednesday, March 22, at 2:00 p.m. Eastern (1:00 p.m. Central, 12:00 p.m. Mountain, 11:00 a.m. Pacific, 10:00 a.m. Alaska, 8:00 a.m. Hawaii). At that same time, disability activists will be in DC taking action to stop this bill from moving forward. We need members of Congress to hear from their constituents around the country! Your Representatives need to hear that you oppose Medicaid cuts to the community-based services that people with disabilities need!

NCIL is working with ADAPT, ASAN and other groups to coordinate these events. If you are organizing an event, please contact Ericka Jones by phone (585-546-7510) or email. Make sure to contact the media and try to get press coverage of your event. Sample media alerts and press releases can be found in the Tool Kit. The Tool Kit also includes a letter from the National Disability Leadership Alliance that was signed by more than 200 organizations and is being updated regularly.

Please stay tuned for instructions about how to host a press conference, which will follow shortly.

Update: Join Senators Casey and Hassan this Wednesday for a Call to Protect Medicaid

On Wednesday, March 15, 2017 from 11:00-11:40 a.m. Eastern, Senator Bob Casey (D-PA) and Senator Maggie Hassan (D-NH) will be hosting a conference call to discuss the Republican agenda to cut Medicaid. The National Council on Independent Living (NCIL) encourages you to join this important discussion.

Cuts to the Medicaid program will be enormously harmful to the disability community, and Senator Casey and others will be discussing what is currently happening and how to continue fighting to protect Medicaid. Please join us, Senator Casey, and other disability groups and advocates as we fight against these dangerous cuts.

Join the Call:

Contact Congress to Stop the American Health Care Act – Quick Timeline!

Congress is moving quickly on legislation to repeal and replace major provisions in the Affordable Care Act (ACA) and to radically restructure Medicaid (see more information in our alert from earlier this week). The House Energy & Commerce and Ways & Means Committees both held long markups last week and eventually passed their portions out of committee. Uncaptioned videos of those markups are archived at the Committees’ websites: Energy & Commerce archived livestream; Ways & Means archived livestream.

There has been public opposition to the American Health Care Act (AHCA) in both the House and the Senate by Democrats as well as Republicans. And just yesterday, the Congressional Budget Office (CBO) released their report on the AHCA, which projected that as a result of the AHCA, 24 million people would lose their health insurance and there would be almost $900 billion in cuts to Medicaid. This report confirmed many of our fears, but it is unclear whether this information will present hurdles to the bill’s passage. Either way, we know that Congress’s ultimate goal is to vote the bill out of both chambers before the April recess.

Our action now is CRITICAL! The AHCA will result in higher out-of-pocket costs, fewer choices, and loss of coverage for people with disabilities. Under Medicaid per capita caps, states will see drastic cuts to their federal funding, which will result in people with disabilities losing access to critical community-based services. Without those services, people with disabilities around the country will be forced into nursing homes and institutions, turning back decades of progress our community has fought for. If the AHCA is passed into law, not only will affordable coverage once again be out of reach for many people with disabilities, but our independence and our lives will be at stake.


We need NCIL members around the country to reach out to their Senators and Representatives and tell them that this bill will be disastrous for people with disabilities! We need YOU to explain to your members why the Affordable Care Act (ACA) and Medicaid are essential to the disability community. You can get in touch with your members of Congress by calling the Capitol Switchboard (202-224-3121), and they can direct you to the offices of both your Senators and your Representative.


We need local people to hold local events telling Republicans in Congress that they were not elected to cut vital Medical and community-based services for people with disabilities. NCIL is working with ADAPT to coordinate these events. Please organize a press conference, public accountability session, or public leafleting of the office. To make your event more effective, contact the media and try to get press coverage of your event. We have sample media alerts and press releases in an online Toolkit. It includes a letter from the National Disability Leadership Alliance that was signed by more than 200 organizations. The Toolkit is being updated regularly. If you are organizing an event, contact Ericka Jones, by phone (585-546-7510) or email.


You can also tell your members of Congress how unhappy you are with the AHCA by Tweeting directly at them. See a list of Twitter handles for the House and Senate. When Tweeting about Medicaid, make sure to use the hashtag #SaveMedicaid. Also, the Coalition for Citizens with Disabilities (CCD) has put together a week of social media action to fight against the proposals to cut Medicaid. You can join in the efforts to #SaveMedicaid by participating in this week of action and by following NCIL’s Tweets at @NCILAdvocacy. You can find information about the week of social media action along with sample tweets in CCD’s Social Media Toolkit, and the schedule is as follows:

  • Tuesday – ‘HCBS are Best’ Day: Share how important HCBS waivers and services are to you and your family.
  • Wednesday – ‘Impacted People’ Day: Share stories of how cuts to Medicaid will have severe impacts to people with disabilities, seniors, children, and low-income Americans.
  • Thursday – Thunderclap / Medicaid Call-In Day: Sign up for the Thunderclap by 8:00 a.m. on Thursday, and call your Members of Congress and tell them to oppose the AHCA because the caps on Medicaid funding will be extremely damaging to people with disabilities and many others.
  • Friday – ‘Don’t Cut My Services’ Day: Tweet and Facebook and call your Members of Congress and tell them not to cut services provided under Medicaid!

NCIL Opposes the American Health Care Act (AHCA) That Will Put Healthcare and Services Out of Reach for People with Disabilities

Last week, Republicans in the House of Representatives released the American Health Care Act (AHCA), a dangerous proposal that puts the health and independence of people with disabilities all around the country at risk. The National Council on Independent Living (NCIL) strongly opposes this legislation.

NCIL logo - National Council on Independent Living“NCIL fights for the civil and human rights of people with disabilities in this country. We believe that healthcare as a human right, and this bill puts that right in jeopardy,” said Kelly Buckland, Executive Director of NCIL. “The proposed changes to Medicaid and our healthcare system will result in skyrocketing out-of-pocket costs and a drastic decrease in access to the services people with disabilities rely on.” Medicaid is the primary funder of the services and supports that people with disabilities need to live in our homes and communities. Buckland said “the extreme cuts to Medicaid proposed by this bill will result in more people with disabilities being forced out of our homes and communities and into nursing homes and institutions.”

The AHCA is being touted as a “repeal and replace” bill, but in reality it repeals major provisions of the Affordable Care Act (ACA) without much replacement, and it makes devastating cuts to Medicaid to cover the bill. If passed into law, the AHCA will destroy much of the progress that’s been made by people with disabilities and the Independent Living Movement. Lou Ann Kibbee, Board President of NCIL and Systems Advocacy Manager at the SKIL Resource Center in Kansas, said “the AHCA will put affordable healthcare out of reach for many, and community integration will be set back decades. This bill is an attack on the health and independence of people with disabilities. Our lives are literally at stake, and we will fight it every step of the way.”

Urgent Update: Legislation Introduced to Repeal and Replace the Affordable Care Act and Restructure Medicaid

Yesterday evening the House Ways & Means and Energy & Commerce committees unveiled their legislation to repeal and replace the Affordable Care Act (ACA).

NCIL logo - National Council on Independent LivingWe will be sending out more information about what’s in the legislation, but based on our preliminary review, much of what we anticipated is included. The legislation repeals or phases out many of the ACA’s major provisions including the individual and employer mandates, the 10 Essential Health Benefits, Medicaid expansion, and importantly, the Community First Choice Option (CFCO). It repeals the ACA’s subsidies and replaces them with age-based tax credits. It also introduces continuous coverage requirements and creates a Patient and State Stability fund that states can use for a variety of activities, including the creation of high risk pools. The legislation essentially pays for these changes, plus millions in tax cuts, by restructuring Medicaid into a per-capita cap system, which will result in drastic cuts that will increase exponentially over time.

Even though the legislation has not yet been scored by the Congressional Budget Office (CBO), both House committees are expected to mark up their bills on Wednesday of this week, with the full House voting soon after. We do not yet know if the markups will be live streamed, but event pages with further information are available at:

While Senate support for this legislation has recently been called into question, we know that Congress is trying to have a bill passed in both the House and the Senate this month. We cannot let this happen! This proposed legislation will be incredibly dangerous for people with disabilities. If it passes, affordable coverage will once again be out of reach for many people with disabilities, and our ability to live in our homes and communities will be at risk.

We need to ramp up the pressure! Keep calling your Senators and Representatives. Tell them that this plan is unacceptable, and that we won’t accept Congress turning their backs on their disabled constituents all around the country. And, follow the upcoming markups if you can, and make sure to Tweet at your members of Congress and post on Facebook while they’re happening. This fight is not over yet!