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

Healthcare & Community Living

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…]

Cast Your Vote for ADAPT to Help Fight Attacks on Healthcare

Our friends at ADAPT have been fierce partners in the fight to protect the Affordable Care Act (ACA) and save Medicaid. Sadly, we know this fight is far from over, and we will continue to need ADAPT’s direct action and activism.

ADAPT Logo - Free Our PeopleCREDO has nominated ADAPT as one of three grant recipients of their October grant program. The amount of grant money they receive depends on how many votes ADAPT gets by October 31, and they are currently in last place. ADAPT needs your help!

Cast your vote:

By simply submitting your email address, you can help ADAPT to continue their critical role in this important fight. Then, we ask that you, too, share this link with your networks so that everyone you know can vote for ADAPT!

What I Learned Participating in Direct Action Against Healthcare Cuts

By Anna Phearman, NCIL Policy Intern

“Hey Mom! I’m just calling to let you know that I am okay, but I’ve been arrested.” Just the call you want to get from your twenty-year-old daughter, right? As it turns out, my mom was far from thrilled by this news. It took some time, explanation, and several rounds of, “No Mom, I didn’t actually go to jail, this is the equivalent of a speeding ticket,” but, eventually I was able to convey that this arrest was much more than the act of a rebellious teenager. It was a growing and learning experience. It was me (and 181 others) standing up for something I am deeply passionate about: healthcare as a human right.

Anna Phearman, Kings Floyd, and Hindley Williams wait to be processed after being arrested at the ADAPT Action against the Graham-Cassidy Healthcare Bill. Anna and Kings hands are cuffed with zip ties. Photo credit: Play and Ideas.

Photo credit: Play and Ideas.

You might ask how on earth you can learn something at a protest (of all places?!). I, for one, thought the very same thing until I participated in an ADAPT protest of the Graham-Cassidy bill.

The reality is that during this protest and the events following, I learned more than I ever have in a classroom. I learned what it means to be caring while watching people pass around snacks to complete strangers upon hearing that they were hungry. I saw activists sharing water and personal stories alike, and learned the strength of commonalities. Differences didn’t matter; no matter the ability, age, race, or religion, there was a sense of togetherness and caring for others. I learned what it means to be passionate, truly passionate, through people who had journeyed from all around the country, scraped up money for travel, taken days off work, and woken up at 4:00 a.m. in order to protest and make visible just how much their healthcare matters to them.  [Read more…]

Reminder: Send NCIL Your Resources to Help Fight Medicaid Cuts

The NCIL Healthcare / PAS Subcommittee is working to gather resources to help Centers for Independent Living (CILs) fight cuts to state Medicaid programs. If you have fought proposed Medicaid cuts in your state, or if your state has implemented cuts, we would like to hear from you.

NCIL logo - National Council on Independent LivingWe are looking for:

  • Resources you have developed or existing resources you have identified to assist with your advocacy, e.g. data partners (such as universities), other community-based organizations (CBOs), legal aid, and any other partners. Please be as specific as possible.
  • Data or studies from your state (or nationwide) that have supported your advocacy efforts to prevent cuts.
  • Data or other information from your state on outcomes, if cuts (or limits) have already been implemented. Please tell us what was cut / limited (Non-Emergency Medical Transportation, Non-Medical transportation, dental, DME, adult briefs, etc.). Did the state take any action, e.g. restore any of the benefits?
  • Information about innovative demonstration projects in your state that used Medicaid dollars and resulted in positive health outcomes, increased community integration, nursing facility diversion, or another result?
  • Information about other effective strategies you have utilized to prevent Medicaid cuts.

Please share your experiences and resources with us by sending this information to ( We hope that by capturing this information, we can make more resources available to CILs around the country that are fighting similar battles. Thank you!

Information Alert: An Update on the Administration’s Recent Efforts to Undermine the Affordable Care Act

Last week, the Trump Administration took two actions to undermine the Affordable Care Act (ACA). We want to make sure you have an understanding of what these two actions mean, and how they may impact people with disabilities and / or pre-existing conditions.

October 12 Executive Order (EO)

Last Thursday, Trump signed an executive order directing three federal agencies (Health and Human Services, Labor, and Treasury) to create rules to allow the sale of insurance across state lines, expand the use of association health plans, and broaden the use of short-term / catastrophic coverage.

  • Association Health Plans (AHPs) provide small businesses with a way to pool together to buy insurance, and under the Affordable Care Act (ACA) they are required to cover all of the law’s essential health benefits. The EO looks to expand the use of AHPs, as well as to ease the federal rules around them.
  • Short-term limited duration insurance is intended to fill gaps in coverage by providing bare-bones coverage for up to 3 months. These plans are not required to abide by ACA regulations and they provide coverage that is far from comprehensive. The EO looks to expand the use of these short-term policies.

There is much uncertainty surrounding these directives, but there are several clear concerns. Easing the federal rules around AHPs could pave the way for these plans to be exempt from core requirements, like covering the essential health benefits. Expanding the use of both AHPs and short-term insurance will result in people with fewer healthcare needs leaving the ACA markets, resulting in higher costs and fewer options for people with pre-existing conditions and disabilities who need the protections and coverage mandated by the ACA.

October 13 Decision to End Cost-Sharing Reduction Payments

On Friday, Trump announced his decision to end cost-sharing reduction (CSR) payments to insurers. CSRs are payments made to insurers under the Affordable Care Act (ACA) to enable them to lower deductibles and out-of-pocket costs for low-income individuals. Eliminating these payments will make it significantly harder for insurers to provide affordable coverage options. With open enrollment just weeks away, it is too late for insurers to change their rates; however, it is expected that some insurers may decide to pull out of the market as a result of this decision. Moreover, we can expect further fallout in 2019. The CBO predicted that without CSR payments, premiums for silver plans will rise 20%.

Again, there is uncertainty surrounding this action as well. The pressure is on Congress, who can still pass legislation to fund CSRs. As of the time of publication of this article, Attorneys General from 18 states and D.C. have filed a lawsuit against this decision.

The full impact of both of these actions may not be known for some time, but what’s clear is that Trump has taken it upon himself to undermine the ACA however possible. And as we well know, efforts to undermine the ACA by loosening regulations, create plans outside the ACA markets, or deny legally required payments will harm people around the country and disproportionately impact people with pre-exiting conditions and disabilities.

NCIL will continue to keep you updated as more information becomes available.

Information Alert: HCBS and Medicaid Waivers

Some States are requesting the Centers for Medicare & Medicaid Services (CMS) to approve new Medicaid Waivers and/or amend existing Medicaid Waivers that potentially undercut (1) the Supreme Court’s Olmstead decision; (2) the federal regulation’s “most integrated setting” mandate, and (3) the DOJ’s Statement of the Department of Justice on Enforcement of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C.

The following information is intended to help disability advocates fight Medicaid Home and Community Based changes that States might seek, via a Medicaid Waiver, which will harm people with disabilities.

First, the Medicaid federal regulations, 42 C.F.R. § 304(f), requires notice of waiver changes:

“(f) The [State] agency must establish and use a public input process, for any changes in the services or operations of the waiver.

(1) This process must be described fully in the State’s waiver application and be sufficient in light of the scope of the changes proposed, to ensure meaningful opportunities for input for individuals served, or eligible to be served, in the waiver.

(2) This process must be completed at a minimum of 30 days prior to implementation of the proposed change or submission of the proposed change to CMS, whichever comes first.

(3) This process must be used for both existing waivers that have substantive changes proposed, either through the renewal or the amendment process, and new waivers.”

Second, the ADA federal regulations require that all services and programs, which include Medicaid Waivers, be provided “in the most integrated setting.” The U.S. Supreme Court in the Olmstead decision relied on this regulation and that decision is still good law. This is a very strong handle.  [Read more…]

WE DID IT: #Trumpcare Failed Again!

Congratulations! Tuesday afternoon, Senate Majority Leader Mitch McConnell announced that the Senate will not pursue a vote on the Graham-Cassidy bill at this time. This decision was a direct result of the advocacy efforts the disability community has led across the country; thank you for all of your incredible efforts!

NCIL logo - National Council on Independent LivingThis is a big win for people with disabilities, and YOU made this happen. You called, you wrote, you took action. Even when they wouldn’t listen, you kept at it. And eventually, they took notice. Because of you, they heard our demands. Because of you, they could no longer ignore the power of the disability community.

That said, while we should take a moment to celebrate, we must continue to fight. This fight is far from over. Leader McConnell made it very clear on Tuesday that they are not giving up on their healthcare reform efforts. And, we know that the attacks on Medicaid and other critical programs our community relies on will continue as well. We cannot let down our guard now.

Graham-Cassidy has been defeated, but we still have work to do:

  • We must call on Congress to continue with their previous bipartisan efforts on healthcare, which means no more attempts to repeal the Affordable Care Act;
  • We must make sure our Members of Congress understand how important Medicaid is to people with disabilities, and demand that they oppose any legislation that would cap or cut the Medicaid program;
  • While you’re at it, talk to your Members of Congress about the Disability Integration Act (DIA), S. 910 and H.R. 2472! Regardless of what Medicaid attacks lie ahead, the Disability Integration is a critical bill that will protect disabled people from institutionalization.
  • And finally, thank your Senators who took a stand and opposed this latest attempt to repeal the Affordable Care Act and decimate Medicaid. They need to know we support their decision, and we need to make sure they commit to opposing any future bills that rip healthcare and Medicaid away from their constituents!

Again, thank you and congratulations on this victory! This has been an exhausting battle, and yesterday’s decision was a huge win. We know there’s a lot of uncertainty ahead of us, but there’s no doubt that if we continue working together, more victories lie ahead.

Email the Finance Committee to Help Stop Graham-Cassidy!

Senate Republicans have only 9 days left to pass their latest effort to repeal/replace the Affordable Care Act (ACA) and radically restructure and cut Medicaid. Previous attempts in the Senate failed largely because of the disability community’s efforts, and we need to make sure the Graham-Cassidy proposal (PDF) does not succeed!

On Monday at 2:00 p.m. Eastern, the Finance Committee will be holding a hearing on the Graham-Cassidy bill. We need to make sure that the hearing is filled with strong statements of opposition, including personal stories about how this bill will harm people with disabilities.

Help stop Graham-Cassidy! Submit testimony for Monday’s hearing by emailing Please send an email, and if you can, CC your Senators as well!

NCIL logo - National Council on Independent LivingHere are some points you can include in your email:

  • People with disabilities rely on Medicaid, and the per capita caps and cuts included in Graham-Cassidy will jeopardize our health, threaten our independence, and put lives at risk.
  • The Medicaid cuts in Graham-Cassidy will limit access to home and community-based services, which will result in more disabled people and older adults being forced into costly institutions.
  • Allowing states to waive protections for people with pre-existing conditions will make coverage unaffordable for many – and many of those are people with disabilities.
  • Also, share your personal story! Tell them how Graham-Cassidy will impact you personally!

Most importantly, ask them to oppose Graham-Cassidy and any other bill that cuts, caps, or imposes block grants or per capita caps on Medicaid!

Please take action. We must stop this bill! Comments must be submitted by Monday at 1:00 p.m. Eastern.