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

Spring 2018 NCIL Legislative & Advocacy Priorities Booklet Now Available!

The spring edition of NCIL’s Legislative & Advocacy Priorities is now available at the NCIL website.

NCIL logo - National Council on Independent LivingThis document contains specific information on the national legislative and policy priorities identified biannually by the NCIL membership, including funding for the Independent Living Program, healthcare and long-term care, housing, transportation, education, and more.

Please share this document with your Center or SILC staff, board, and the Senators and Representatives who serve your districts.

Contact NCIL for further information on the issues discussed in this document.

National Council on Independent Living 2017 Annual Report

Dear Advocates and Friends,

We are pleased to announce that NCIL’s 2017 Annual Report is now available at our website.

NCIL 2017 Annual Report Cover Art: Collage of images and text – full description included in document2017 was an extraordinary year for the Independent Living Movement. We were tested on every front. Some battles were won, and others lost, but we rose to every challenge, demonstrating the strength, commitment, and resiliency of the disability community.

We joined forces to defeat attacks on healthcare. We fought attempts to weaken the Americans with Disabilities Act and erode our civil rights. We forced disability rights to the forefront of debates led by people who had no intention of including us. We worked diligently to initiate a global Independent Living network in order to create a world in which people with disabilities are truly valued equally and participate fully.

Nevertheless, many members of our community are paying the price for misguided and discriminatory policies on immigration, policing, access to healthcare and in-home services, and segregated workplaces and classrooms.

Helen Keller said, “It is in the most trying times that our real character is shaped and revealed.” We are humbled to be part of a community that displays such bravery and commitment to the principles of justice and equality. NCIL members have carried us through a difficult year with grace, determination, and grit.  [Read more…]

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…]

NCIL Senate Letter To Protect the ADA: One More Chance to Sign on Your Organization!

Last year, NCIL sent House leadership a letter signed by 507 organizations urging them to oppose H.R. 620, the ADA Education and Reform act of 2017. On February 15, H.R. 620 passed through the House. Our fight now moves to the Senate, where we must urge them not to take up this dangerous bill!

NCIL logo - National Council on Independent LivingAs a reminder, the original letter was a response to a letter from the business community titled “It’s Time to Restore the Integrity of the ADA” (PDF). Sent on the 27th anniversary of the Americans with Disabilities Act of 1990, members of the business community celebrated the anniversary by diminishing this historic civil rights legislation and expressing their support for H.R. 620.

Now that the House has passed H.R. 620, NCIL is re-opening the letter for signatories and moving on to the Senate. We have updated the letter, and it will be sent to Majority Leader Mitch McConnell and Minority Leader Chick Schumer.

We encourage you to add your organization as a signatory.

See a list of current signatories. If your organization signed on to the House letter, you will be kept on as a signatory. If you would like to remove your organization from the letter, please contact Eleanor at no later than March 2, 2018.

The deadline to sign on is Friday, March 2, 2018. Please join us as we fight this dangerous bill!

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 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
  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…]

Stories from the Field: Lessons of Sharing from the Disability Network Business Acumen Learning Collaborative

“Tell me and I forget, teach me and I may remember, involve me and I learn.” ― Benjamin Franklin

Maneuvering change, developing strategies and implementing solutions can quickly become overwhelming if your organization feels like it is alone in its quest for success. Fortunately most Community Based Organizations (CBOs)* have found that connecting and sharing with other CBOs provides critical information and insight as they seek ways to diversify their organization, develop new payment streams, customize services to a new clientele base, meet contractual obligations or otherwise advance their business.

HCBS Business Acumen Center LogoThe Disability Network Business Acumen Learning Collaborative works together to develop and implement business-related strategies to state-specific challenges to integrating long term services and supports and healthcare services. Each state team includes at least one state agency and CBO serving persons with disabilities (physical, intellectual and/or developmental). Most also include an integrated healthcare entity or other organization dedicated to the sustainability of CBOs serving people with disabilities. Working together, they serve as an example for how states, health plans and CBOs can enhance business relationships and develop sustainable business paths.

Join this webinar on February 28, 2018 from 12:30 – 1:30 p.m. Eastern as representatives from Missouri, New Hampshire, New York and Texas describe how they have shared experiences to help each other advance solutions to resolve common issues.  [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 or Lindsay Baran at 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

An Update from the NCIL Rehabilitation Act / IL Funding Subcommittee

The NCIL Rehabilitation Act / IL Funding Subcommittee would like to thank Jeff Hughes for his hard work as Co-Chair of the Subcommittee. Jeff recently had to resign as Co-Chair but, fortunately for NCIL, he will continue serving as a Subcommittee member. We would also like to thank Dan Kessler for joining Ann Watts McDaniel as the Subcommittee’s new Co-Chair. Much work remains to be done!

NCIL logo - National Council on Independent LivingThe current Administration is posing many challenges for our members and the people we serve. The President’s budget is among our top concerns, as described in NCIL’s recent Budget Alert. Last week, the President released a 2019 budget proposing a $5 million cut to Independent Living, reducing the IL budget to $96 million, if enacted.

CILs have been underfunded for many years. In 2014, Transition services were added as new core services – with no additional funding. As a result, CILs are working harder than ever with insufficient funding. We need to make sure that these proposed cuts to Independent Living do not make it into the Congressional spending bills. We know the impact that Independent Living has on the lives of the people and communities we serve. Now, more than ever, it is important for us to talk to members of Congress about the value of CILs and Independent Living.  [Read more…]

An Update from the NCIL Housing Subcommittee

By Brian Peters & Darrel Christenson, Co-Chairs

Quite a few things have been happening on the housing front in the New Year. On the positive side, Congress passed an $89.3 billion disaster relief package that will provide funding to areas impacted by Hurricane Maria, with money set aside for rebuilding the electrical grids in Puerto Rico and US Virgin Islands. Congress also passed a budget deal that lifted the Budget Control Act cap, enabling many programs to avoid cuts.

equal housing opportunity symbolHowever, on the negative side, Housing and Urban Development (HUD) Secretary Carson delayed the implementation of Affirmatively Furthering Fair Housing until 2025, effectively delaying efforts to combat segregation. President Trump’s FY 2019 budget proposes dramatic cuts of $8.8 billion (18.3% cut compared to 2017 levels) to housing programs!

With the two-year budget deal, “Bipartisan Budget Act of 2018”, the Appropriations Committee will need to complete the FY 2018 funding bill before their deadline of March 23. Advocates should call Congress to insist on increased funding for housing.

President Trump also proposed getting rid of the National Housing Trust Fund, which is targeted mostly at extremely low-income households that rent. Many households with a person with a disability are considered extremely low income. There is also a push in Congress to reform housing finance (Fannie Mae and Freddie Mac) which funds the National Housing Trust Fund. It is very possible that the Fund could lose its source of revenue.  [Read more…]