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

Healthcare & Community Living

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.

Contact Your Senators to Stop Graham-Cassidy!

A targeted Action Alert for Alaska, Arizona, Arkansas, Colorado, Iowa, Kansas, Maine, Ohio, Tennessee, and West Virginia

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!  [Read more…]

Graham-Cassidy Healthcare Bill Introduced

This Wednesday, Senators Lindsay Graham (R-SC) and Bill Cassidy (R-LA) introduced the Graham-Cassidy-Heller-Johnson (GCHJ) proposal (PDF), the Republicans’ last-ditch effort to repeal and replace the Affordable Care Act (ACA) and make major cuts to Medicaid.

NCIL logo - National Council on Independent LivingLike the previous bills we’ve seen, the GCHJ proposal would eliminate coverage and protections for millions while completely decimating Medicaid. The proposal would repeal the ACA individual and employer mandates, eliminate assistance that makes coverage affordable, revoke protections for people with pre-existing conditions, phase out Medicaid expansion, and dramatically cut Medicaid by imposing per capita caps. Just like the other bills, the GCHJ proposal will be devastating for people with disabilities.

NCIL is closely monitoring the progress of the GCHJ proposal, and we will be sending out a targeted action alert next week with more information for constituents of key Republican Senators. In the meantime, call your Republican Senators NOW and urge them to oppose the GCHJ proposal!

You can reach your Senators by calling the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY). New tools are available at You can also use Resistbot to have your texts turned into faxes, mail, or hand-delivered letters; use to fax your Senators for free; or contact them via social media. You can find social media contacts on Contacting Congress.

What is Important to YOU about Community Living? Tell Your Story!

A Message from the HCBS Advocacy Coalition

The National Council on Independent Living (NCIL) is a member of a national coalition of cross-disability and aging organizations supporting the Home and Community Based Services (HCBS) Settings Rule called the HCBS Advocacy Coalition. The federal government issued the HCBS Settings Rule in 2014 to ensure that all people receiving Medicaid-funded HCBS have full access to the benefits of community living. Over the last three years, our coalition has worked collaboratively with federal agencies, states, and disability and aging stakeholders to ensure that implementation of the Rule fulfills its intent to ensure opportunities for community integration for all people receiving Medicaid-funded HCBS services. Throughout this process, the HCBS Advocacy Coalition has offered resources and feedback to ensure the Rule is implemented with integrity and that HCBS services are strengthened and promote a meaningful life integrated in the community.

What we do: As we meet with newly appointed high-level officials in the Trump Administration who are charged with implementing the HCBS Settings Rule, we continue to offer the expertise of the coalition. In order to strengthen our message, we need one key thing for these meetings – YOUR STORIES!

What we need: We need to share REAL stories, YOUR stories. Tell us about how you — as a person who receives HCBS services, a family member, friend or provider — have seen an improved quality of life, more independence, and more opportunities because of Medicaid-funded HCBS services. Tell us about your life in the community and about what participating in your community means to you. We particularly encourage stories from people who have transitioned to the community from an institution and from people with significant support needs.

How we will use your stories: We will use these stories to advocate for the strong implementation of the HCBS Settings Rule in your state, to protect the funding of HCBS services, and to make sure that people in leadership positions the federal government know how important and successful HCBS services are as they make policy decisions about community programs.

How to weigh in: Please send your story (500 words or less) and a photo (optional) to Tell us what state you live in, whether you/your family member/friend/client receive HCBS for aging or disability services, what types of services you receive (help with work, getting dressed, shopping, etc.), how it has improved your/their quality of life, and anything else you want to share about the value of home and community-based services.

For more information about the HCBS Advocacy Coalition and the HCBS settings rule, visit

Thank you! Your voice is so important and we will raise it!