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

Healthcare & Community Living

New EVV Advocacy Document and Opportunities to Take Action!

Since its creation earlier this year, NCIL’s Electronic Visit Verification (EVV) Task Force has closely followed federal and state activity and has been hard at work strategizing and advocating against EVV. With EVV systems rolling out around the country, one thing has been made clearer than ever: EVV is harmful and discriminatory, and it undermines consumer direction – a key tenet of the Independent Living Movement! In addition, it is an absolute violation of our privacy and has a chilling effect on workers continuing or entering the labor force of personal care services providers. All of these issues combined will result in putting our right to live independently in the community in severe jeopardy.

NCIL logo - National Council on Independent LivingThe NCIL EVV Task Force has created the following Principles & Goals document to guide NCIL’s work, and we hope our members will be able to use this to guide their advocacy on the issue as well. Please feel free to use this document (as a whole or in pieces) as you see fit in your advocacy. Please also share this document with your networks and encourage everyone you know to learn more about why EVV is so harmful to people with disabilities!

Opportunities to Take Action

  1. Provide input to CMS!

The Centers for Medicare and Medicaid Services (CMS) will host an Open Door Forum via national conference call to solicit stakeholder feedback on EVV implementation. We encourage all interested individuals to participate in the call on November 7 from 1:00-3:00 p.m. Eastern at (800) 837-1935, Conference ID 33979177. We also urge you to submit comments. Please submit your comments on EVV to CMS at EVV@cms.hhs.gov by October 26, 2018 and include “November 7 Stakeholder Call Feedback” in the subject line of the email. NCIL believes EVV threatens decades of independent living advocacy work and privacy rights of disabled citizens. Please let CMS know that you support the NCIL EVV Principles and Goals document with your comments. Feel free to copy sections from the document that speak to your specific concerns and/or write your own unique statement.  [Read more…]

ADAPT Protesting in Senator Gardner’s Office!

Members of ADAPT from Colorado and across the country are protesting at Senator Corey Gardner’s office to demand that he support the Disability Integration Act (DIA), S. 910 / H.R. 2472. Senator Gardner is the only member of Congress from Colorado not co-sponsoring the DIA. See ADAPT’s press release.

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.The protest at Senator Garner’s office comes on the heels of protests at several other Senators’ offices, including Senators Ted Cruz (TX) and Lamar Alexander (TN) yesterday, and Senators Johnny Isakson (GA), Jeff Flake (AZ), and Ben Sasse (NE) earlier today.

All of these protests were calling on our Senators to support their disabled constituents by co-sponsoring the DIA!

The DIA addresses the fundamental issue that people with disabilities are often forced into institutions, losing their basic freedoms and civil rights, in order to receive the long term services and supports (LTSS) they need. The DIA will require states and insurance providers that pay for LTSS to reverse this institutional bias by providing community-based services first and offering home and community based services to people currently in institutions.

Please help boost ADAPT’s efforts by doing the following:

  • Follow ADAPT on Facebook and Twitter (@NationalADAPT), and boost their efforts with the hashtag #ADAPTandRESIST!
  • If you’re in any of these Senators’ states, take local action! Please feel free to use ADAPT’s press releases as a template for a press release on behalf of your CIL or organization. And, urge your local press to cover this story! Tell them about the ADAPT action and why the DIA is so important to you.
  • Call Senator Gardner’s office now at 202-224-5941 and tell him to co-sponsor #DIAtoday!

ADAPT Protesting NOW in Senator Ted Cruz’s Office!

Right now, members of ADAPT are protesting (see their press release) at Senator Ted Cruz’s office to confront him on his failure to support the Disability Integration Act – DIA (S. 910 / H.R. 2472). After years of trying to get Senator Cruz to support his disabled constituents, it was time to confront him in his DC office. The activists are also pointing out that Cruz’s challenger in the upcoming election, Beto O’Rourke, was one of the first cosponsors of the DIA in the House of Representatives and has also announced his intention to cosponsor in the Senate if elected.

NCIL logo - National Council on Independent LivingThe DIA addresses the fundamental issue that people with disabilities are often forced into institutions, losing their basic freedoms and civil rights, in order to receive the long term services and supports (LTSS) they need. The DIA will require states and insurance providers that pay for LTSS to reverse this institutional bias by providing community-based services first and offering home and community based services to people currently in institutions.

Please help boost ADAPT’s efforts by doing the following:

  • Follow ADAPT on Facebook and Twitter (@NationalADAPT), and boost their efforts with the hashtag #ADAPTandRESIST!
  • If you’re in Texas, take local action! ADAPT has put out a press release. Please feel free to use this as a template for a press release on behalf of your CIL or organization! And, urge your local press to cover this story! Tell them about the ADAPT action and why the DIA is so important to you.

Call Senator Cruz’s office at 202-224-4922 and demand he become a cosponsor of the Disability Integration Act!

Take Action Today to Save MFP!

The Money Follows the Person program (MFP) officially expired in 2016, and the EMPOWER Care Act (S. 2227 and H.R. 5306) has been introduced to reauthorize the program. MFP and the EMPOWER Care Act will be a focus of two events in D.C. this week, so we must use this opportunity to take action! While we know how vital MFP is, we need to make sure our Members of Congress hear from their constituents about the importance of MFP and community living.

Today at 10:00 a.m. the House Energy & Commerce Subcommittee on Health began a hearing to consider five bills including the EMPOWER Care Act. Then on Thursday, the Consortium for Citizens with Disabilities LTSS Task Force, the Disability and Aging Collaborative, and the Leadership Council of Aging Organizations with Representatives Brett Guthrie (KY) and Debbie Dingell (MI) are hosting a policy briefing on MFP! People with disabilities and other experts will be testifying on the importance of the MFP program, including Mike Oxford, past NCIL Board President, current NCIL member, and Executive Director of the Topeka Independent Living Resource Center in Kansas! Find more information on the Facebook event page.

NCIL logo - National Council on Independent LivingWith all this activity going on, it’s crucial that our members of Congress hear from us!

Take Action

Call your Members of Congress!

  • Educate your Members: Share with them how MFP has helped free you or people you know from institutions, and how reauthorizing MFP is needed to help disabled people still stuck in institutions.
  • Encourage them to attend Thursday’s briefing: Tell your Members and their staff to attend the briefing to hear from people with disabilities and other experts on the MFP program! The hearing is at 3:00 p.m. in 2103 Rayburn, and it is entitled “Helping Seniors and People with Disabilities Get Back Home.”
  • Teach them about the EMPOWER Care Act: Tell them how important MFP is and urge them to cosponsor the bill (S. 2227 in the Senate and H.R. 5306 in the House) if they don’t already.
  • How to contact: All members of Congress can be reached by calling the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY). You can also find your Members’ Twitter handles and other contact information on Contacting Congress. (If you post on social media, use the handle #FundMFP).

Continue sharing your stories!

  • Share with us: See our previous alert for more details about the stories we’re looking for, and share them with us for our advocacy efforts in DC.
  • Share with the press: Arrange press interviews highlighting the stories of folks who were able to move home because of MFP, or individuals who are stuck in institutions and would benefit from MFP’s reauthorization. Sharing our stories is the key to gaining the support of members of Congress AND the public. If you successfully get the press to cover MFP, please send a link of the coverage to lindsay@ncil.org.

NCIL Statement of Principles on Chronic Pain and Opioids

As a response to people with chronic pain experiencing increasing barriers to adequate pain treatment, the National Council on Independent Living created the Chronic Pain / Opioids Task Force. The goal of the Task Force is to work to ensure the voices of people with chronic pain and other disabilities are part of the ongoing national discussion, and to develop a national strategy around this important issue. The Chronic Pain / Opioids Task Force has created the following Statement of Principles to guide NCIL’s work, and we hope our members will be able to use this to guide their advocacy on this issue as well.

NCIL Statement of Principles on Chronic Pain and Opioids

Take Action Over the Recess!

Members of Congress are back home during various times in August, and now is a critical time to talk with them about the Disability Integration Act (DIA) and other key priorities! Senators will be home this week for a shortened recess, but they’ll be back in DC by August 13. Representatives will be in their home districts for the whole month of August and returning to DC on September 4. Take advantage of the time they’re home to meet with them about the things that are most important to you!

Disability Integration Act: If your Senators or Representative have still not signed on to the Disability Integration Act (S. 910 and H.R. 2472), urge them to become a cosponsor! Tell them how important this bill is to their disabled constituents. Explain to them that this is a bipartisan bill that would help disabled people stay in our homes and communities. If they want their disabled constituents to be a part of their communities, what are they waiting for? We need ALL our Members of Congress to support the DIA! If you get in touch with your Senators or Representative about DIA, please email an update to update@c4ci.org!

NCIL logo - National Council on Independent LivingEMPOWER Care Act: Make sure you also talk with your Senators and Representatives about the Ensuring Medicaid Provides Opportunities for Widespread Equity, Resources, and (EMPOWER) Care Act (S. 2227 and H.R. 5306)! This bipartisan bill would reauthorize the Money Follows the Person (MFP) demonstration program, which has freed over 75,000 disabled people from institutions, but expired in 2016. Urge your Members of Congress to support this important bill!

Other priorities: Make sure to talk with your Members of Congress about other issues that are priorities to you and your community. Talk with them about how critical it is to increase funding for the Independent Living Program. Tell them how much their disabled constituents rely on Medicaid and the Affordable Care Act. Talk about the lack of accessible, affordable housing or transportation in your communities. Use this opportunity to make sure your Members of Congress are hearing about the issues that matter to their disabled constituents! You can feel free to use the NCIL Legislative & Priorities Booklet to help support your efforts:

As we’ve proven time and again, the disability community has the power to make things happen. Use this opportunity to educate your Senators and Representatives on the issues that are important to all of us! Every single meeting with your Members of Congress is one more opportunity to have our voices heard and our efforts supported. Take action today!

NCIL Statement of Principles on Chronic Pain and Opioids

As a response to people with chronic pain experiencing increasing barriers to adequate pain treatment, the National Council on Independent Living created the Chronic Pain / Opioids Task Force. The goal of the Task Force is to work to ensure the voices of people with chronic pain and other disabilities are part of the ongoing national discussion, and to develop a national strategy around this important issue. The Chronic Pain / Opioids Task Force has created the following Statement of Principles to guide NCIL’s work, and we hope our members will be able to use this to guide their advocacy on this issue as well.

The NCIL Statement of Principles on Chronic Pain and Opioids is available in PDFWord, and plain text.

NCIL and Centene Partner to Increase Provider Accessibility for People with Disabilities

The National Council on Independent Living (NCIL) is partnering with Centene on an initiative to increase the accessibility of provider medical offices and services for people with disabilities. The Provider Accessibility Initiative (PAI) will kick off with the “Barrier Removal Fund” (BRF) in three pilot states, Illinois, Texas, and Ohio, as well as educational and compliance components that will be implemented in all Centene markets nationwide.

NCIL logo - National Council on Independent LivingThe goal of the PAI is to improve member access and health outcomes by increasing the percentage of practitioner locations and services in Centene’s network that meet minimum federal and state disability access standards.

“NCIL is proud to have the opportunity to leverage the wealth of knowledge and expertise of Centers for Independent Living to increase accessibility of medical offices and services. We look forward to the day that all Americans can enjoy equal access to this fundamental civil right,” said Kelly Buckland, NCIL Executive Director.

“Studies have shown that Medicaid and Medicare beneficiaries with disabilities receive less preventive care due to inaccessible provider exam rooms and/or diagnostic equipment. Through this partnership, Centene and NCIL aim to solve a vital national problem and key social determinant of health for people with disabilities and their companions,” said Dr. Ken Yamaguchi, Executive Vice President and Chief Medical Officer for Centene.   [Read more…]

Disability Integration Act (DIA) Update

First, we have THREE new cosponsors in the House! Our new cosponsors are:

  • Vicente Gonzalez (D-TX)
  • Cheri Bustos (D-IL)
  • Nanette Diaz Barragan (D-CA)

THANK YOU TO EVERYONE WHO WORKED TO SECURE THESE COSPONSORS!

NCIL logo - National Council on Independent LivingWe are approaching a critical time for our legislation with the NCIL Annual Conference, Day on the Hill, and upcoming midterm elections. To help get you ready, here are some “DIA Tools You Can Use”.

Need general information about DIA?

Learn about the bill at www.disabilityintegrationact.org.

Contacting your Member of Congress?

Here are some resources for meetings and other contacts with legislators. We have fact sheets and comprehensive Hill packets that you can email or print and give them. While DIA is bipartisan, in our discussions with legislators many of the questions we have received about the legislation have differed along party lines. In order to better help you address your legislator’s questions, we have developed materials specific to each party, so be sure to use the right ones.  [Read more…]

Take Action over the July 4th Congressional Recess!

As the nation celebrates its freedom and independence this week, disabled folks once again have a great opportunity to speak with their legislators in their home districts about our freedom and independence!

NCIL logo - National Council on Independent LivingUse this recess to educate your Senators and Representatives on the Disability Integration Act (S. 910 and H.R. 2472), and ask them to become a cosponsor! Tell them why this legislation is so important to their constituents with disabilities. Tell them that living in our own communities and making choices about our own lives is our right, and as our elected officials, it’s their responsibility to protect that right!

Also, if you represent a CIL or other organization, make sure to sign on as a supporter of the DIA.

Learn more about the Disability Integration Act at www.disabilityintegrationact.org.