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

Healthcare & Community Living

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…]

SAMHSA is Accepting Applications for Up to $52 million in Grants to Treat People Affected by Homelessness and Mental Health Disorders

Source: Administration for Community Living

The Substance Abuse and Mental Health Services Administration (SAMHSA) is accepting applications for up to $52 million in grants under its Treatment for Individuals Experiencing Homelessness program. The money will be used to help local service providers offer behavioral health and recovery support services to people experiencing homelessness.

SAMHSA expects to make as many as 16 grants of up to $500,000 or $1 million annually, depending on the grantee. The grants will be awarded for up to five years and are subject to availability of funds.  [Read more…]

HCBS Conference: Call for Sessions is Now Open

The National Association of States United for Aging and Disabilities (NASUAD) is pleased to announce the Call for Sessions for the 2018 National Home and Community Based Services Conference, August 27- August 30, 2018 in Baltimore, MD.

The HCBS Conference shines a spotlight on how states and partners have developed promising practices, developed with innovative systems, and formed unique partnerships. We are seeking original, thought-provoking education sessions that enable national attendees to hear about creative approaches, new ideas, innovative models, and emerging trends as well as topics that address the pressing issues facing aging and disability programs. Submit Your Session Today!  [Read more…]

NCIL Welcomes Sheryl Grossman As Community Living Advocate

The National Council on Independent Living is excited to welcome Sheryl Grossman to the position of Community Living Advocate as part of the National Organizing Project, funded by the Ford Foundation. The Community Living Advocate will work with both NCIL and ADAPT to advocate for community integration on Capitol Hill, track and analyze community living and home and community-based services (HCBS) policy and trends, and coordinate community organizing trainings.

Sheryl smiles at the camera against a beige wallSheryl has over two decades of experience working with Centers for Independent Living (CILs) and disability rights organizations across the country. She has been a pillar in many ADAPT chapters and has become well known for her work lobbying members of Congress to support the Disability Integration Act (DIA).

“Sheryl’s familiarity with not only NCIL and ADAPT, but the issues at stake, made her an ideal candidate for this position,” said Kelly Buckland, NCIL Executive Director. “With her help, we will continue the crucial work begun by ADAPT and NCIL last summer to advance community living for all people with disabilities.”

We’re thrilled to have Sheryl and thank the Ford Foundation again for their support.

Take Action to Save MFP!

Last month, Senators Portman (R-OH) and Cantwell (D-WA) introduced the EMPOWER Care Act (S. 2227) to reauthorize the Money Follows the Person (MFP) demonstration program. MFP expired on September 30, 2016, and states are starting to scale back and end their MFP programs. But because there has not been a lot of public attention on MFP, very few members of Congress are aware of the need to reauthorize and fund it.

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 into 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! Please urge your Senators to continue the Money Follows the Person program by supporting the EMPOWER Care Act!

Take Action Now!

  • Participate in Thursday’s National Call-In Day! Call your Senators and tell them to support the EMPOWER Care Act (S. 2227) and pass it immediately! Call the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY). Find more information at Thursday’s Facebook event. RSVP and share widely!
  • Participate in Friday’s National Social Media Day! Tweet at your Senators and post on Facebook. Find your Senators’ 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 Friday’s Facebook event.
  • Email your members of Congress before February 8! 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.