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

Healthcare & Community Living

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!

What CBOs Need to Know: Managed Long Term Services and Supports (MLTSS)

Source: NASUAD: National Association of States United for Aging and Disabilities

As a Community Based Organization (CBO)*, your mission is rooted in supporting people with disabilities and/or older adults to have vibrant and meaningful lives in their community. Part of fulfilling that mission is staying up to date on efforts to move toward greater integrated health care, primarily through Managed Long-Term Services and Supports (MLTSS). Join NASUAD to learn more about the basics of what a MLTSS program is and how community based organizations, states, and the health plans responsible for the management of the long-term services and supports can work together.

Please join on May 24, 2017 from 12:30 – 1:30 p.m. Eastern for the one hour webinar: “What CBOs Need to Know: Managed Long-Term Services and Supports (MLTSS)”. [Read more…]

Out Now! #IAmAPreExistingCondition Video with Rooted in Rights!

NCIL is excited to announce the release of our new #IAmAPreExistingCondition video in partnership with Rooted in Rights! This video showcases the real stories of real people with pre-existing conditions who will be harmed if the American Health Care Act (AHCA) is passed into law.

Watch the video, and then contact your Senators to tell them to vote NO on the AHCA! Don’t forget to donate to NCIL so that we can keep advocating for community living for all!

Thanks to everyone who submitted a video, and a special thanks to our supporters:

Together, we can make sure the voices of the one in four Americans with pre-existing conditions are heard!

NCIL Statement on House Passage of the American Health Care Act

The National Council on Independent Living is deeply disappointed by the House’s 217-213 passage of the American Health Care Act (AHCA) yesterday. This bill represents a huge step backwards for people with disabilities who – if this bill is passed into law – will face higher health care costs, less coverage, and a greater risk of institutionalization. Specifically, the AHCA would do this by:

  • NCIL logo - National Council on Independent LivingSlashing Medicaid funding by over $800 billion
  • Eliminating protections for people with pre-existing conditions
  • Ending the enhanced Federal funding for the Community First Choice Option
  • Eliminating the ten Essential Health Benefits
  • Making fundamental changes to the ACA’s premium subsidies and other assistance
  • Ending Medicaid Expansion

The bill now heads to the Senate, where it only needs 51 votes to pass. We need the Senate to reject this disastrous bill, so we have to keep fighting to ensure they do just that.

Take Action!

First: Make sure Congress knows we’re going to hold them accountable. See how your Representative voted. If your Representative voted against the AHCA, thank them! If your Representative voted for it, let them know how disappointed you are and just how harmful their vote was.

Then: Start talking to your Senators! We need to make sure every single Senator understands the dangerous implications of the AHCA. Reach out to them today to let them know your concerns. Then call their offices to schedule a meeting with them over the Memorial Day Recess at the end of the month.

Today is a sad day, but there is still hope. Please join us in working to ensure that the ACHA does not become law!

NCIL Announces Collaboration with Rooted in Rights on #IAmAPreexistingCondition Video

In light of House passage of the American Health Care Act, people with disabilities and other preexisting conditions are fearing for their lives today. That’s why we’re joining forces with Rooted in Rights to create the #IAmAPreexistingCondition video project.

What is the #IAmAPreexistingCondition project?

The #IAmAPreexistingCondition project will share stories of people with preexisting conditions and the impact that the AHCA could have on them.

How can I get involved?

Film yourself talking about your preexisting condition(s) using the script provided in our video submission form. You can speak it, sign it, type it, hold up a sign, just as long as you express it! A smartphone or webcam video is fine. When you’re done, upload the video to YouTube and send to us through our video submission form. Please note that a submission is not a guarantee you’ll be included in the final video.

Need help? An example video is on the submission form.

What if my organization wants to become involved?

If you’re involved with a disability rights or healthcare organization that would like to partner with us, please email and Though NCIL and Rooted in Rights are the main collaborators on this project, we welcome the support of other organizations who recognize the danger this bill poses for people with disabilities. Your organization will be listed as a “supporting organization” on the webpage where the video is posted.

This is your chance! Let your legislators know why they need to vote “no” on the AHCA! We look forward to seeing your contributions!

Success Stories: Community Partners Share Their Experiences Implementing Research to Improve Community Living

Source: Research and Training Center on Community Living

With the collaboration of many community partners, the Research and Training Center on Community Living has tested five interventions to enhance community living and participation among people with disabilities. Now we are pleased to share success stories from our community partners.

The Center’s researchers worked closely with consumers and staff members from Centers for Independent Living to implement these new approaches in communities across the United States. The community partners’ stories highlight a few of the many positive changes that resulted from putting research ideas into action.

In addition, our Community Living Summit page features video presentations about the five research projects, along with PowerPoint presentations and fact sheets. Each video includes the project’s researcher(s), the community member who took part in implementing the intervention, and a member of our Scientific and Consumer Advisory Panel.

New Online Tutorial on Health Insurance and Disability from CHRIL

The Collaborative on Health Reform and Independent Living (CHRIL) has developed an online tutorial on Health Insurance and Disability, which might be useful to Centers for Independent Living and other disability advocates.

This course provides consumers and advocates a basic understanding of the U.S. health insurance market, and the challenges people with disabilities face in obtaining and maintaining affordable and comprehensive insurance coverage. The primary audience includes persons with disabilities, advocates, staff and board members of centers for independent living, members and staffs of statewide independent living councils and staffs of other organizations serving persons with disabilities. The course requires about 30 minutes to complete.

Urgent Action Needed: Another AHCA Amendment Likely

It has been reported that Representatives Upton and Long are crafting an amendment to add $8 billion for high risk pools. In doing so, they are hoping to garner more support from moderate republicans so that the American Health Care Act (AHCA) will have enough votes to pass.

NCIL logo - National Council on Independent LivingDo not be fooled by claims that this amendment would protect people with pre-existing conditions. High risk pools have been tried in the past, and they have failed. High risk pools are just another way to discriminate against people with disabilities and health conditions, providing people with pre-existing conditions neither adequate nor affordable health care.

Unsurprisingly, this amendment does nothing to counter the harm that will be caused by the rest of the AHCA. All of our previous concerns remain, including drastic cuts to Medicaid, getting rid of Medicaid expansion, ending the Community First Choice Option, and skyrocketing health care costs. High risk pools only add to our growing concerns.

Please contact your Representative now and tell them not to support the dangerous AHCA. Tell them that this amendment only adds to the major problems with this legislation. It is important for everyone to contact your Representatives today! Please see our previous alert for a list of priority members.