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

Healthcare & Community Living

Does Your CIL Participate in MFP? Do You Have Participants Who Use MFP?

We need your voices on the Hill now!

Money Follows the Person (MFP) officially ended in 2016 and although states have until the end of this year to spend their remaining funds, 7 states have completely run out and many more are dismantling their programs as the end nears. Because of this, we must urgently push this program on the Hill. While we know the power of MFP, Members of Congress do not understand that services, lives, and jobs are being put at risk if MFP is not re-authorized.

Fortunately, there are now bills in both the Senate (S. 2227, introduced by Senators Cantwell and Portman) and the House (H.R. 5306, introduced by Representatives Guthrie and Dingell). Both versions have the exact same text, and the same name: The Empower Care Act.

Please contact your legislators now! Tell them what this program means to you and your consumers. Tell them what it means to your Center for Independent Living (CIL). Ask for them to sign on as co-sponsors. Please copy or contact Community Living Advocate Sheryl Grossman (sheryl@ncil.org) with your correspondence so that she can track our progress.

National Organizing Project Announces Mini-Grants for Emerging ADAPT Groups

The National Organizing Project (NOP), a collaborative between the National Council on Independent Living and ADAPT, with funding from the Ford Foundation, is proud to offer mini-grants to support 10 emerging ADAPT groups (those groups who have not yet met the criteria for becoming a chapter) in their direct organizing efforts. We recognize that seed money is difficult to come by and are proud to be able to ease this burden for 10 groups. All interested groups are encouraged to apply. Applications are due Friday, April 13, 2018.

This will be a competitive process. All applications submitted within the timeframe will be reviewed by a panel of referees. Final determinations are expected to be made by April 20, 2018 with notifications expected by April 27, 2018. If you have questions, concerns, or accommodation requests, please do not hesitate to contact the NOP’s Community Living Advocate, Sheryl Grossman by phone at 202-864-4249 (v) or by email at sheryl@ncil.org.

The Center for Disability Rights Launches the Free Our People Film Contest

The Free Our People Film Contest is one way in which The Center for Disability Rights (CDR) is working to dismantle the systems that keep people locked away in nursing homes.

Thus, CDR is inviting any and all filmmaking enthusiasts to participate in its film contest, in order to garner stories of how the institutional bias has impacted members of every community. The film contest will last two months and will accept both documentary and narrative films. A panel of judges with a range of expertise in film, entertainment and disability advocacy will evaluate the entries and prizes will be awarded. The first, second and third place entries will receive a variety of prizes that include mentoring sessions with accomplished film professionals including Wendy Calhoun (co-executive producer of EMPIRE), $1000 and $500 cash prizes, travel funding, and filmmaking software. Two honorable mention spots will also have their films included in CDR’s upcoming film festival, scheduled for summer of 2018. The contest organizers would like to thank the following sponsors for providing these prizes: Dramatica, Scrivener, Mariner Software, Jungle Software, and The Center for Disability Rights.

The Free Our People Film Contest is exciting because it centers disabled experiences and the perspectives of people with disabilities in the whole filmmaking process,” said last year’s first place winner, Cheryl Green. “It’s such an honor to be recognized for filmmaking that doesn’t cater to non-disabled people. This contest and festival gave me the opportunity to challenge myself as an artist while confronting the hugely complex issues around institutional bias against people with disabilities.” Read more at cdrnys.org.

HCBS Business Acumen Center Website

NASUAD is pleased to announce the HCBS Business Acumen Resource Center’s new website, HCBSBusinessAcumen.org!

HCBS Business Acumen Center LogoThe HCBS Business Acumen Center is a resource center for community-based organizations (CBOs) that serve individuals with disabilities. The resource center provides tools, resources and examples of promising practices that promote the sustainability of disability-focused CBOs. The HCBS Business Acumen Center is designed to help organizations expand their payer portfolio with managed care organizations (MCOs), accountable care organizations (ACOs), healthcare systems, cities, counties, private pay clients and others. Through the HCBS Business Acumen Center, CBOs can receive training, technical assistance, resources and examples of promising practices from CBOs across the country and from a learning collaborative comprised of state departments, disability-focused CBOs and MCOs currently working together to address state-specific opportunities in a changing long-term services and supports delivery system.

The new HCBS Business Acumen Center website serves as a hub of information about the HCBS Business Acumen Center, its initiatives, resources, and how you can get involved.

Visit HCBSBusinessAcumen.org to explore resources, information, and more!

Take Action to Save MFP – New National Days of Action This Week!

Your actions in early February to ask the Senate to #FundMFP made a big impact, and now it is time to once again take action to make the EMPOWER Care Act law!

As a reminder, Money Follows the Person (MFP) expired on September 30, 2016, and states are starting to scale back and end their MFP programs. All programs will be out of money this year! We need your advocacy to get the House and Senate to pass the EMPOWER Care Act to reauthorize and fund MFP!

NCIL logo - National Council on Independent LivingMFP was enacted in 2005 with strong bipartisan support. It was designed to help states transition people with disabilities from institutions to the community, and to assist states in rebalancing their long-term services and supports (LTSS) systems to increase access to home and community-based services. MFP is one of the longest running, most successful Medicaid demonstrations. Since it began, 47 states have participated and over 75,000 disabled people have been liberated from institutions, and Centers for Independent Living (CILs) have played a critical role in that. Congress must work to save and fund MFP, and they need to hear from us! The EMPOWER Care Act has already been introduced by Senators Portman (R-OH) and Cantwell (D-WA) in the Senate (S. 2227), and it’s expected to be introduced in the House by Representatives by Guthrie (R-KY) and Dingell (D-MI) this week. Please urge your Senators and Representative to continue the Money Follows the Person program by supporting the EMPOWER Care Act!

Take Action Now!

  • Participate in Wednesday’s National Call-In Day! Call your Representative and Senators and tell them to support the EMPOWER Care Act and pass it immediately! Call the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY). Find more information at Wednesday’s Facebook event. RSVP and share widely!
  • Participate in Thursday’s National Social Media Day! Tweet at your Representative and Senators and post on Facebook. Find their Twitter handles and other contact information on Contacting Congress. Make sure to use the hashtag #FundMFP in your posts. You can find more information, including sample Tweets, at Thursday’s Facebook event.
  • Email your members of Congress! You can customize a message to your members of Congress and see the data on responses.
  • Highlight MFP in 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 extension. Media coverage can be 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.

Invitation to Participate in a Columbia University Survey on Precision Medicine

We are a team of researchers from Columbia University Medical Center in New York. We are conducting an online survey. The topic of the survey is precision medicine research. Precision medicine research looks at a person’s genetics (what they inherit from their families), their environment, and lifestyle. This type of research can help preventing and diagnosing diseases and developing new treatments.

It is important that we learn what people with disabilities think about precision medicine research. We are NOT asking you to volunteer for precision medicine research. We are asking you to take our online Survey because you may have one of the following:

  • Blindness or low vision
  • Deafness or hard of hearing
  • Physical disability
  • Autism
  • Intellectual or developmental disability
  • Learning disability
  • Mental health or psychosocial disability

The Survey asks what you think about precision medicine research, and for some information about you. Your answers are valuable to us and will help researchers design the proposed precision medicine study. You will receive a $25 gift card if you complete the Survey.  [Read more…]

Quick Turnaround: MFP Companion Bill to be Introduced in the House – Sign the Letter of Support!

This week, Representatives Dingell and Guthrie are expected to introduce a companion bill to the Senate EMPOWER Care Act in the House of Representatives. The language will be the same as the Senate version and will extend the MFP demonstration program through 2022. Read more about the bill in our previous alert.

Take Action!

NCIL logo - National Council on Independent LivingA letter of support will be sent to Representatives Dingell and Guthrie and House Energy & Commerce leadership for introduction. This letter will be the same as the letter sent to the Senate upon introduction. If you already signed on to the Senate letter, you will be kept on the House letter. If you would like to be removed, email Joe Caldwell at Joe.Caldwell@ncoa.org by 6:00 p.m. today. If you are not signed on to the letter but would like to be added, please sign on by 6:00 p.m. Eastern today using the link below. All new sign-ons and sign-offs are due today, Monday, February 26 at 6:00 p.m. Eastern.

Thank you for your ongoing work on this. The introduction of this legislation in both the House and the Senate is wholly due to ongoing advocacy of the disability community! We will continue to keep you updated on any progress or advocacy opportunities related to MFP, and stay tuned for information about another National Call-In Day coming soon!

Support NCIL: Become a Runner Today for the 2018 ADAPT FUN*RUN

Dear Friends,

Once again, NCIL is participating in the annual ADAPT FUN*RUN and you can join us! This year’s FUN*RUN will take place Sunday, May 13, 2018; 1:00-4:00 p.m. Eastern at Upper Senate Park in Washington, DC.

2018 ADAPT FUN*RUN Logo - Activism Through the Ages - Fun Run For Disability Rights – Graphic features a wheelchair, running shoes with the universal symbol of accessibility on them, and stars.The FUN*RUN is an annual fundraising event hosted by ADAPT, where people pledge to walk, jog, run, or roll a certain amount of laps around Upper Senate Park in Washington DC. Each participant gets their own fundraising page for people to sponsor them and the proceeds go to the organization that the person chooses to support.

Here’s how you can support NCIL through the FUN*RUN:

  1. Visit adaptfunrun.net.
  2. Click “Register for a FUN*RUN” at the top of the page.
  3. Log in or create an account.
  4. In the section labeled “Please select a FUN*RUN”, select “ADAPT FUN*RUN 2018 For Disability Rights – Activism Through The Ages!! (Washington, DC, 05/13/18)”.
  5. In the dropdown menu “Organization I am supporting” select “NCIL”.
  6. Select walk, jog, run, roll, or virtual from the “I am able to” drop down menu. If you are unable to attend the FUN*RUN in person, please select “Virtual”.
  7. Click the estimated number of laps you will do.
  8. Click submit, and you’re done! Share your FUN*RUN page so that people can sponsor you and support NCIL!

If you are a CIL that would like to participate in the FUN*RUN, you can support NCIL while also raising money for your CIL!  [Read more…]

NCIL Announces the Creation of New Task Forces to Focus on Electronic Visit Verification (EVV) and Chronic Pain / Opioids

The National Council on Independent Living (NCIL) is happy to announce the creation of two new Task Forces.

NCIL EVV Task Force: The 21st Century Cures Act that passed into law in late 2016 included a provision requiring states to implement electronic visit verification (EVV) systems. With implementation deadlines of January 1, 2019 for personal care services and January 1, 2023 for home health services, states are developing plans and beginning implementation. In some states, we have already seen harmful effects of intrusive and burdensome systems. The EVV Task Force will work to coordinate NCIL’s national advocacy strategy as EVV continues to be implemented across the country. If you are interested in joining the EVV Task Force or want to learn more, contact Charlie Carr at CharlesCarr@dpcma.org or Lindsay Baran at Lindsay@ncil.org. For background information, see NCIL’s Position opposing EVV.

NCIL logo - National Council on Independent LivingNCIL Chronic Pain / Opioids Task Force: As efforts to address opioid addition around the country increase, people with chronic pain and other disabilities continue to be left out of the conversation. This has resulted in increased barriers to effective pain management for people with chronic pain, discrimination against people who use opioids to manage their pain, and treatment / recovery options that are inaccessible to disabled people. The Chronic Pain / Opioids Task Force will work to ensure that the voices of people with chronic pain and other disabilities are part of the ongoing national discussion and to develop a broader advocacy strategy for NCIL. If you are interested in joining the Chronic Pain & Opioids Task Force or want to learn more, contact Lindsay Baran at Lindsay@ncil.org.

Participants Needed: National Survey on Health Reform and Disability

The Collaborative on Health Reform and Independent Living (CHRIL), which is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), is looking for adults with disabilities to complete an online survey about getting and using health insurance and health care services. Whether you have private insurance, insurance from an employer, Medicaid, Medicare or no insurance please complete the survey. NIDILRR wants to know how the Affordable Care Act (ACA) may be affecting your life.

Adults ages 18 to 62 with any type of disability are encouraged to participate. The survey should take about 20 minutes to complete and your responses are anonymous.

[Read more…]