the advocacy monitor

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

Healthcare & Community Living

VICTORY! #Trumpcare Failed!

CONGRATULATIONS! Very early Friday morning, the Senate voted on the “skinny repeal”. Senators Collins, Murkowski, and McCain voted against the bill, leading to its failure.

NCIL logo - National Council on Independent LivingThis is a HUGE win! And this is a direct result of our advocacy over the last six months. The disability community has led advocacy efforts nationwide, and due to all of our efforts, Trumpcare has failed!

We want to say a great big thank you to all of the NCIL members who have been taking action around the country. All of your calls, emails, and letters made a difference. All of your meetings had an impact. All of your protests, die-ins, and arrests changed the conversation around this issue and made sure the disability community was heard. Of course, we would be remiss if we didn’t thank ADAPT, whose chapters have led and collaborated with CILs on some incredibly effective actions around the country. The failure of this bill is a direct result of all of our collective efforts. Opposition nationwide was led by the disability community!

This is not the end of our fight to protect Medicaid. There will be more Medicaid attacks ahead, and because of that, we need Congress to pass the Disability Integration Act (DIA), S. 910 and H.R. 2472. Only by ramping up our efforts can we get Congress to protect people with disabilities from institutionalization. And of course there are other fights ahead, including ADA notification bills in Congress, IL funding, and assisted suicide bills in several states (just to name a few).

But, we should all take a moment, or even the weekend, to savor this success! We did this. YOU did this. Thank you, and congratulations!

Statement of National Council on Independent Living and National ADAPT on the Senate’s Motion to Proceed Vote

Yesterday, at the exact same time that the Senate voted to proceed on a bill that will strip disabled people of lives and liberty, approximately 250 advocates from ADAPT and the National Council on Independent Living were protesting the vote in the atrium of the Hart Senate office building. Capitol Police arrested 64 of our people.

We are disgusted that this bill has not yet died. Despite massive outpourings of opposition from the disability community and from the American people, Senate Republicans continue to want to debate a settled question: that the lives, liberty, and equality of disabled Americans are promised in the Constitution and secured in law.

NCIL logo - National Council on Independent LivingUnder the proposed cuts to Medicaid in this bill, disabled people will lose home and community based services that secure our liberty. We will be institutionalized against our will. If we refuse to be locked away in institutions, and go without community based services, many of us will rapidly get sick. Many will die. Lives and liberty. Denied to disabled people.

It would be easy to be disheartened by yesterday’s vote, but we have made important gains through this ordeal. The disability community has come together in amazing ways, and the rest of the nation has followed our lead in opposing this devastating legislation. The battle is far from over.

We call upon all Americans to oppose this threat at every opportunity. When your Senators and Representatives come back to your district, be there. Be mad. Let them know it. Make them understand that they will wear this legislation like a weight around their necks, and that they can’t threaten people’s freedom without consequences.

Our community is strong. We have faced greater threats than this Congress. We have been institutionalized, kept from our families and communities. We know what the stakes are. We have been there before and we will not go back.

We are relentless. We will not stop fighting until Medicaid is safe and disabled lives and liberty are secured. We will not stop fighting. We will not stop.


GOP Fumbling on Healthcare – Thank you! Please Keep It Up!

Two more Republican Senators announced on Monday that they oppose the Better Care Reconciliation Act (BCRA). Senator Mike Lee from Utah and Senator Jerry Moran from Kansas both issued statements expressing their opposition. Because Republicans can only afford two no votes, and Senator Collins (ME) and Senator Paul (KY) already confirmed their opposition, the Senate does not have the support needed to pass the BCRA and will not move forward with the vote.

NCIL logo - National Council on Independent LivingFirst, thank you for all of your calls, emails, meetings, protests, and other forms of action! The failure of this bill was a direct result of your work all over the country! As has been said before, the disability community has been leading the advocacy efforts against this bill and has been building momentum in nearly every state. Congratulations on a big win!

That said, while the bill may be dead, the efforts to get rid of the Affordable Care Act (ACA) and cut Medicaid are not over. Senate Majority Leader McConnell said Monday night that instead they will vote on a “repeal-only” measure next week that would repeal the ACA with a two-year delay. While a straight repeal vote is highly unlikely to pass – in fact, Senators Capito, Collins, and Murkowski have already expressed their opposition – it’s important to note that repeal without a replacement would be a disaster. All it would do is kick the can down the road, and it would likely still have the same (or very similar) results. It would eliminate the enhanced funding for community integration used by the Community First Choice Option and other incentives and protections included in the ACA. Additionally, since a straight repeal would not restructure and cut Medicaid, which we’ve seen is a GOP priority, we can expect that to be on ongoing effort outside of the repeal vote.

The Senate may be at a standstill for now, but we need to keep up our advocacy efforts. Moreover, even if we stop efforts to cut and cap Medicaid and repeal the ACA, disabled Americans will continue to be forced into unwanted and unnecessary institutionalization where they are denied their most fundamental rights. Now more than ever, we need Congress to pass the Disability Integration Act (DIA), S. 910 and H.R. 2472.

We need to keep up our advocacy efforts on Medicaid and ACA repeal, but we also need to focus on urging both Republicans and Democrats to co-sponsor DIA!

Take Action!

Look at the links provided above to see if YOUR Senators and Representatives are co-sponsoring the DIA. If not, contact them! When speaking to Democrats and progressives, highlight the critical role the disability community played in stopping this healthcare bill. Now, we need Democrats and progressives to support OUR efforts. When speaking with Republicans, focus on the fact that life and liberty are guaranteed under the Constitution, and that this bill ensures that disabled Americans don’t have those rights taken away from them by states or managed care companies.

And remember, this fight over ACA and Medicaid is not over. We will continue to keep you updated as healthcare and Medicaid efforts in Congress evolve and move forward, and in the meantime, keep telling your Senators how vital Medicaid and/or the ACA are to you! Until Republican members of Congress say that they will work in a bipartisan way on healthcare and the ACA, and until they say they will vote NO on any measures that would cap and cut Medicaid, we need to keep up our efforts!

Appropriations Update: Keep Pushing for An IL Increase!

Last week the House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies (L-HHS-ED) approved the FY 2018 L-HHS-ED spending bill. The full House Appropriations Committee will mark up the bill tomorrow, July 19.

NCIL logo - National Council on Independent LivingThe spending bill proposes level funding for the Independent Living Program, which amounts to a total of $101,183,000 ($78,305,000 in Part C funding and $22,878,000 in Part B funding). Thankfully, the bill does not include the President’s proposal to eliminate Part B funding and ‘consolidate’ it with the State Council on Developmental Disabilities funding and Traumatic Brain Injury funding, which would have resulted in a $57 million reduction in funds for people with disabilities.

Funding for the IL Program has hovered around these levels for years, and simply put, it is not enough to meet our needs. While we are happy that the IL program did not see any cuts in the House bill, level funding just does not cut it! For several years we have been asking Congress for a $200 million increase for the Independent Living line item. This number was determined after a careful analysis of the needs of the IL community, which includes the increasing demands on the IL Program, the addition of all three pieces of the fifth core service, and overcoming devastating cuts.

Take Action

We still have time to fight for an increase in FY 2018 appropriations. We know there are a lot of other issues competing for attention, but IL funding must remain a priority! Please contact your Senators and Representatives! Only the IL community can ensure our legislators understand the importance of the IL Program and the critical need for increased funding. Members of Congress need to know that without adequate funding, their constituents will pay the price. CILs in their own states and districts will be unable to support their constituents with disabilities to live independently in their homes and communities. So, tell your members of Congress why the IL Program is vital for you! Refer to our talking points for guidance. And, please encourage them to visit your CIL so they can see the work that’s done in their community every day!

Healthcare Vote Expected Next Week: The Fight Is Not Over!

The Senate released their updated version of the Better Care Reconciliation Act (PDF) yesterday, and all of our concerns remain the same. Read the Senate summary (PDF). The new version will still cut Medicaid by $772 billion, with an even more restrictive growth rate and deeper cuts starting in 2025. Fifteen million people will lose Medicaid. The bill also still eliminates the enhanced match for the Community First Choice Option, removes protections for people with pre-existing conditions, and allows waivers to eliminate essential health benefits, on top of adding a new provision to create separate insurance products for people with higher and lower health needs.

NCIL logo - National Council on Independent LivingThis new version of the bill has made NO improvements. Despite that, we’re hearing that Republicans who were undecided or even opposed to the previous version of the bill are now leaning toward voting YES. Republicans are reportedly becoming more unified around this new version, and we cannot let that happen!

The vote is expected to take place next week. That means that we have less than one week to fight this dangerous bill, and every single day counts. We need to make sure our Senators understand how dangerous this bill is for their constituents with disabilities. We need them to understand that we are literally fighting for our lives. And we have less than one week to make sure they hear us.

Take Action!

  • Call your Senators by dialing the Capitol Switchboard at (202) 224-3121.
  • Use Resistbot to have your texts turned into faxes, mail, or hand-delivered letters.
  • Use to fax your Senators for free.
  • Find your Senator’s email address, Twitter handle, and other information through Contacting Congress.
  • Please see our previous alert for additional ways to take action. Every single one of us needs to keep the pressure on our Senators! Call often, send emails, keep protesting, and Tweet at GOP Senators; take action in every way you can!

* Priority Senators

We encourage everyone to reach out to their Republican Senators, but the following is a list of top priority Senators, including phone numbers for all of their offices, fax numbers, Twitter handles, and contact pages, as well as information for their healthcare staffers. Please utilize as many of these options as possible! If these are not your Senators, please make sure to reach out to everyone you know in their states!  [Read more…]

Keep Taking Action Over the Recess!

Earlier this week, Senate Majority Leader Mitch McConnell delayed the vote on the Senate’s awful Better Care Reconciliation Act (BCRA) until after the July 4 recess. While this is good news, it is not a victory; this fight is far from over. Remember, we saw the same thing happen in the House, and behind-the-scenes deals pushed the bill through. The same thing can happen here.

NCIL logo - National Council on Independent LivingThe efforts of the disability community have been incredible. Our advocacy around the country is responsible for the delay of the vote. We must keep it up! And while it’s important to work with our allies fighting against this bill, the importance of disability-led efforts cannot be overstated. We are the ones who will be harmed first, and most, by this bill. We are responsible for getting our message through. Nothing about us without us!

Senators will be back in their home states from Friday, June 30 through Sunday, July 9. We MUST keep the pressure on them during the recess. At this point, several Senators have publicly stated that they will not support the bill in its current form. This is not enough. They can change the bill’s current form. They can make it even worse. We need Senators to commit that they won’t vote on ANY bill that would cap and cut Medicaid.

Take Action!

Action during the recess is essential. Republican Senators are unlikely to hold Town Halls this time around. We have to find other ways to get our message to them and everyone else:

  • Use this leaflet! Spread it far and wide! Bring copies to your July 4th parades, picnics, and parties. Give it to friends and foes alike so they know why cutting Medicaid is deadly for the disability community. If your Senators happen to be at these events, give them a leaflet, too!
    • If your Senator is at any of these public events, make sure to get on Twitter and/or Facebook to let others know where you are and who you saw! Use the hashtags #ADAPTandRESIST and #SpotYourSenator so other disability activists can come join you. Then, hand your Senator a copy of the leaflet and tell them what Medicaid and community based services mean to you.
  • Continue protesting at your Senators’ offices! CILs and local ADAPT chapters around the country have been organizing protests in states all week. These efforts have been tremendous, with more attention from the media and the public being given to our concerns than ever. Now that our Senators will be back home, it’s time to redouble those efforts! Check out ADAPT’s toolkit and The ADAPT Activist Handbook for help in planning your protest. If you are planning to protest, let us know so we can support and signal boost! Please email the following: a) Target Senator b) Where the protest will be (city, address if possible) c) What TV & radio stations and newspapers people in that location use for their news (if possible).
  • Set up meetings with your Senators: Explain to them how harmful the cuts to Medicaid and other changes in this bill will be to their constituents with disabilities. Give them a copy of the leaflet. Demand that they commit to vote no on ANY bill that will cap and cut Medicaid. Bring other people with disabilities so you can all share your stories and express your anger that the Senate is pushing a bill that will kill some of us! Tell them how Medicaid keeps you alive and independent in the community. This may be our last chance to protect the Medicaid program so many of us rely on. Get loud! Be angry!
  • Keep Tweeting! Follow and join in the conversations using the hashtags #ADAPTandRESIST, #SaveMedicaid, #SummerOfADAPT and #NoCutsNoCaps. Tweet directly at your Senators! You can find their Twitter handles at Contacting Congress.
  • Call your Senators DAILY and demand they vote no on this terrible bill! Use the Senate Directory to find your Senator’s contact information or reach your Senators’ staff in DC by calling the Capitol Switchboard at (202) 224-3121. 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!
  • 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. You can also find your Senator’s email address, Twitter handle, and other information through Contacting Congress.
  • Reach out to your friends and family in key states! If you have contacts in states with Republican Senators, please make sure to reach out to them and encourage them to take action!

Because of your efforts, we got the vote delayed. Now let’s work to stop it for good!

For additional resources, please see our June 23 alert and the recent Call to Action from NCIL’s Executive Director!

The Senate Proposed Health Care Bill: CBO Score Released: A Breakdown of Potential Destruction

By Matthew Schwartz, NCIL Summer Policy Intern

On Monday, the Congressional Budget Office (CBO) released their report on the Better Care Reconciliation Act of 2017 (BCRA), the Senate’s version of the healthcare bill. The CBO report shared what would happen if the new healthcare bill was implemented. Unsurprisingly, the estimation is as destructive as previously predicted.

The BCRA would cause an estimated 22 million more Americans to be uninsured by 2026 – a total of roughly 50 million uninsured citizens – doubling the current amount of people uninsured under the Affordable Care Act (ACA). The Senate’s version would also reduce the federal deficit by $326 billion by the year 2026. Some will claim that this reduction is beneficial; however, the deficit reduction is achieved through cuts that threaten the lives of Americans with disabilities.  [Read more…]

My First ADAPT Action Went a Little Like This…

By Raquel Bernstein, NCIL Summer Policy Intern

Before I came to DC as an intern for the National Council on Independent Living (NCIL), I had learned minimal information about ADAPT. I had heard legendary stories about ADAPT during my brief time in the NCIL office. These actions felt unfamiliar to me. However, when Youth Transitions Fellow Kings Floyd invited me to participate in an ADAPT action, somehow I just could not say ‘no’. Everybody accepted the fact that I did not want to get arrested at my first action.

We headed to the park where I was fortunate enough to meet some of the most compassionate, kind, and daring people I had ever met. I then learned that we would be participating in a “die in” right outside of Mitch McConnell’s office.  [Read more…]

Request for Applications for Disability Network Business Acumen Learning Collaborative

Source: NASUAD and Administration for Community Living (ACL)

The National Association of States United for Aging and Disabilities (NASUAD) is seeking applicants for the Disability Network Business Acumen Learning Collaborative. This effort is led by NASUAD in partnership with nine other national organizations. The purpose of the Learning Collaborative is to bring together eight (8) to ten (10) state “teams” comprised of state agencies, community-based organizations (CBO – Footnote 1) serving persons with disabilities (physical, intellectual and/or developmental), integrated healthcare entities and other organizations to work together to develop and implement business-related strategies to state-specific challenges to integrating long term services and supports and healthcare services. This work will focus on developing the business acumen of CBOs so that they are prepared to work within a changing business environment.  [Read more…]

A Call to Action from NCIL’s Executive Director

Dear NCIL Family,

I am writing to urge you to take action.

As you may know, NCIL has been working with ADAPT to organize actions around the country to save Medicaid. Amazing work has taken place over the last week. We have seen actions in several states and in DC. We have seen unprecedented media coverage of those actions highlighting the fact that this bill will harm – and kill – people with disabilities.

Kelly Buckland speaks from the stage at the NCIL Rally at the US Capitol. His fist is raised in power.This is our time! We have to act – and we have to act today! We need disability-led actions all over the country to bring attention to how the attacks on Medicaid will affect us. What we do today and tomorrow will most likely make the difference in this bill passing or not. What we are doing is making a difference, and we have to keep it up.

I’m asking you to take action in your local community, take action in your state, and contact your Senators often. Hold actions in your Senator’s office, and if you can’t get there, hold actions in the local GOP offices. Just get out there and make sure our message is heard! There are a lot of groups protesting the bill for a lot of reasons, but our message is different because WE are the ones who will be most affected. Disability-led direct action helps bring focus to the issues of the disability community, and they are also much harder to ignore. This is what we need right now.

As I write this, I am on Capitol Hill meeting with Senators in an effort to save the lives of people with disabilities. That’s where I was yesterday, and it’s where I’ll be most of the week, because this is serious! Our Senators need to know how serious this is for their constituents with disabilities. Our lives depend on the efforts of our community right now.

You can visit the ADAPT website to find out about the actions already being planned. If you’re on Twitter, make sure to follow and join in at #ADAPTandRESIST and #SaveMedicaid! All of you are amazing, and I appreciate your efforts. As has been said many times, Justin Dart told us to get into politics as though our lives depend on it. This time they absolutely do!

Lead on!

Kelly Buckland

NCIL Executive Director