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

Healthcare & Community Living

An Update from the NCIL Chronic Pain and Opioids Task Force

The National Council on Independent Living’s Chronic Pain and Opioids Task Force supports legislative efforts to stem opioid addiction and overdoses in our community and increase access to treatment. While the Substance Use-Disorder Prevention that Promotes Opioid Recovery and Treatment (SUPPORT) for Patients and Communities Act of 2018, which was signed into law on October 24, 2018, does partially achieve that, we also have several concerns with this new law.

NCIL logo - National Council on Independent LivingThe SUPPORT for Patients and Communities Act furthers public safety goals including stopping the flow of illegal mail-order opioids and reducing the supply of counterfeit pills. This legislation also expands access to some addiction treatment and services through Medicare, Medicaid, and federal grant programs.

However, while the aims of the bills are widespread, many of the bill’s provisions focus on reducing opioid prescribing. We are disappointed there was no mention of the fact that most abuse occurs from pill factory activity and illicit opioid use, and not from people being prescribed opioids under supervised treatment for chronic pain. We advocate for continued access to appropriate controlled use of opioids for people with chronic pain under physician care.  [Read more…]

Ask Congress to Contact Committee Leadership for H.R. 3730 to Restore Access to Critical Components of Manual Wheelchairs

Source: NCART

Elections are right around the corner, but we still have a window of opportunity to get Congress to pass H.R. 3730, legislation needed to restore access to critical components of Complex Rehab Manual Wheelchairs.

Recent surveys of clinicians and CRT suppliers illustrated access problems for individuals using this specialized equipment and underscored the need for Congress to take action before year-end. With 118 bipartisan cosponsors and over 50 national disability and clinician organizations supporting it, the bill is primed for passage.

Your voice is needed. Use the link below to contact your Representative and ask that they reach out to the leadership of the Ways & Means and Energy & Commerce committees (listed below) to push for passage of H.R. 3730 this year. Additional resources are also available at www.protectmymobility.org.

We can get this important legislation across the finish line if we come together collectively. Send the message now and share the link with others who will take action to protect access for people with disabilities.

Contact Congress about this issue using the online platform[Read more…]

Deadline Extended: Help Us Document the Impact of EVV!

Now that more states have implemented Electronic Visit Verification (EVV), we are once again looking to you to share your experiences with us. NCIL remains committed to considering all available options to fight this harmful law, and in order to do so, we need your help! Please share your experiences with us. Please answer the questions below, and share any other relevant information. We have extended the deadline for submitting this information to Friday, November 9, 2018. Send your responses to Lindsay Baran at lindsay@ncil.org.

  • Has your state implemented or begun to implement EVV?
  • How does EVV work in your state? For instance, are they using telephonic timekeeping? Are they requiring the use of GPS tracking? Does the system involve random checks, or complex activity logs? Share the details with us.
  • Have you been personally affected by EVV? For instance, have you been more restricted from accessing your community freely? Have problems with the system or technology delayed payments? Have attendants quit due to new burdensome requirements?

As a reminder, please also make sure to join the Centers for Medicare and Medicaid Services (CMS) for and Open Door Forum on EVV. CMS will host this 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.

For additional information on NCIL’s work on EVV, please see our recent alert.

Reminder: Take Action on Electronic Visit Verification (EVV) Before Friday!

Last week we sent out an alert (see below) with the NCIL EVV Task Force’s new Principles & Goals document, and we shared several ways you can take action. As a reminder, this Friday, October 26 is the deadline to submit comments or questions to the Centers for Medicare and Medicaid Services (CMS) ahead of their Open Door Forum on November 7, 2018.

NCIL logo - National Council on Independent LivingWe 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 THIS FRIDAY, October 26, 2018 and include “November 7 Stakeholder Call Feedback” in the subject line of the email. Feel free to copy sections from NCIL’s EVV Principles and Goals document that speak to your specific concerns, and / or write your own unique statement. Please also let CMS know that you support the NCIL EVV Principles and Goals document with your comments.  [Read more…]

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!