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

Announcing: The 2018 NCIL Policy Briefing

Wednesday, June 27, 2018; 3:00-4:30 p.m. Eastern

NCIL is happy to announce our 13th Annual Policy Briefing.

NCIL logo - National Council on Independent LivingThis important presentation will to bring advocates up-to-date on national issues and federal policies that affect people with disabilities and provide participants with question and answer sessions with national leaders to ensure you have in-depth information on the issues you care about most.

The Policy Briefing will ensure that we are fired up and prepared for NCIL’s 2018 Day on the Hill! For those of you who will not be at the 2018 Annual Conference on Independent Living, this will provide you with valuable and timely information that you can use in your community. Please share this training announcement far and wide so that our issues reach many people.

This teleconference is free for NCIL Members. There is a $25.00 registration fee for Non-Members, per call-in site. Fee does not apply per participant in group, provided the group uses the same conference line.

The Policy Briefing will be available via teleconference and CART (captioned) webcast. You must register by 12:00 Noon Eastern on June 27 to participate in the call.

  • Materials: This call will address the issues covered in NCIL’s Legislative & Advocacy Priorities Booklet, which is available in PDF, Word, or plain text.

Please contact Tim Fuchs at with any questions.

Reminder – Call for Stories: Snapshots of Our Lives

The National Organizing Project, a collaboration between ADAPT and NCIL, is asking for your help in collecting stories that we can use on the Hill talking with legislators.

Stories about Community Living

We are looking for are stories depicting the importance of Community Living. We would like to be able to use these stories when talking about the Disability Integration Act, the Empower Care Act, the Home and Community Based Services (HCBS) Settings Rule, Money Follows the Person, and other related legislation and policies aimed at ending the institutional bias. We are looking for:

  • Stories from people stuck in facilities waiting to get out
  • Successful transitions out of nursing homes or other institutional facilities to the community (please include specific programs that were used, including HCBS Waiver programs, Money Follows the Person, etc.)
  • Successful diversions from facilities through use of HCBS Waivers and related services, and
  • Stories from people on waiting lists for services.

Stories about the ADA

We are also looking for stories about the Americans with Disabilities Act. We are looking for:

  • Stories about persistent access barriers that are preventing full participation, and
  • Stories about how the ADA has allowed folks to live fully included lives in the community.

While we recognize that there are many areas of access that need addressing, currently we are focusing on Title III (physical access to public spaces) because of the recent threats to Title III of the ADA with “notice and cure” type bills. If you are sending a story about physical access barriers, please send a picture with your story if possible.

Our goal is to get at least three stories for each topic per legislator. You can help us reach that goal!

Please send stories by June 15, 2018 to Please include your first name (or initials), your city and state, the names of your Senators and Representative, a photo (preferred but optional), and 2-3 paragraphs concisely telling your story. Please also note that we are regularly meeting with legislators and may contact you for stories before the 15th in order to bring those stories into meetings with us.

Take Action on the Disability Integration Act Over the Recess!

Members of Congress are back home this week for recess, so it’s the perfect time to meet with them about the Disability Integration Act (DIA)! If your Senators or Representative have still not signed on to the DIA, take action over the recess by urging them to become a cosponsor!

NCIL logo - National Council on Independent LivingThe Disability Integration Act (S. 910 and H.R. 2472) is a critical bill that would reverse the institutional bias and help disabled people stay in our homes and communities. The DIA is the next logical step in our fight for disability rights and the only piece of legislation that will protect our community from institutionalization. We need ALL of our Members of Congress to support the DIA!

We know the disability community has the power to make things happen, and every meeting, email, call, and action counts. Use this recess to educate your Senators and Representative on the DIA and urge them to become a cosponsor! Tell them that living in our own communities and making choices about our lives is our right, and as our elected officials, it’s their responsibility to protect that!

Learn more about the DIA at

Final Week: Participants Needed for the National Survey on Health Reform & Disability

The NIDILRR-funded Collaborative on Health Reform and Independent Living (CHRIL) is looking for adults aged 18-62 with disabilities to complete an online survey about getting and using health insurance and health care services – the National Survey on Health Reform & Disability.

Why? We want to know how the Affordable Care Act (ACA) is affecting your life. If you have private insurance, insurance from an employer, Medicaid, Medicare, or no insurance please take the survey.

Who? Adults ages 18 to 62 with any type of disability, chronic health condition or mental illness.

How? The survey should take about 20 minutes to complete and your responses are anonymous.

During the week of May 27th – June 2nd the last of 2 drawings to win a $100 gift card will be held. The online survey is fully accessible for mobile devices and screen readers, but if you prefer to take the survey over the phone or have any questions about participating, please call toll-free 1-855-556-6328 (Voice/TTY) or email For more information about CHRIL, go to:

Assistive Technology for the Future: An Update from the NCIL Assistive Technology Subcommittee

Every day, we hear about new assistive technology (AT) that can help us do almost magical things – from being able to hear or see when we couldn’t before, communicate with our friends when we couldn’t speak or write before, enjoy new recreational activities when we couldn’t use our arms or legs before, or control our environment when all we could control was our voice before. These devices are “cool” and many of us want them.

NCIL logo - National Council on Independent LivingHow can you find out about these devices? All states and territories have a state AT program. These programs are charged with telling the residents in their state about AT devices by providing demonstrations, equipment lending libraries, and reuse programs. After you figure out what AT devices you want, the state AT program may be able to help you find a way to pay for them. The Program should also refer you to your state’s Alternative Financing Program (AFP). Many states have an AFP – a program that provides low-interest or no-interest loans for people with disabilities and their families for the purchase of assistive technology.  [Read more…]

Guns, Institutionalization, and Databases: An Update from the NCIL Mental Health Civil Rights Subcommittee

Currently, the White House, NRA, and others are floating two ill-conceived ideas that affect disabled persons: a return to more institutionalization and a database of persons who have received mental health treatment. These are both bad ideas that will reduce the rights of everyone.

It is widely known that persons who have a mental illness label are more likely to be a victim of violence than a perpetrator. Misidentifying mental health as a primary factor in gun violence is as discriminatory and ineffective as attempting to identify party affiliation as a primary factor. While the recent shooter did have a history of contact with the mental health profession, in this and other cases, other factors are stronger indicators. Domestic violence, membership in or sympathy toward hate groups, or ideas that promote some people as less than human are higher on list of indicators.

While it is possible that a personal intent on committing violence could be identified by the database, this type of approach would have negative consequences for all Americans. Specifically, it would severely discourage people from seeking help.  [Read more…]

Apply for the Rooted in Writing Fellowship by May 21!

Are you passionate about disability rights? Are you passionate about writing? If you answered yes to both questions, Rooted in Rights wants YOU to apply for the new Rooted in Writing Fellowship! Applications are open through May 21st.

To learn more about the Rooted in Writing Fellowship, check out this video from the Editor in Chief of the Rooted in Rights Blog. For more details and to apply for the Rooted in Writing Fellowship, visit

Kids As Self Advocates (KASA) Seeks Advisory Board Members

Source: KASA

KASA, the Kids as Self Advocates Project of Family Voices, is seeking youth with disabilities & health care needs to serve on our National Advisory Board. We are seeking youth with a disability and/or health care need, between the ages of 13 and 26 to serve on the all-youth volunteer Advisory Board, which is responsible for strategic planning for the growing project, program planning, activities and outreach. KASA works to help support youth to have control over their lives and future through peer-support and training, changing systems to include us and educating youth about their rights.

Open the application in Word[Read more…]

An Update from the NCIL Employment / Social Security Subcommittee

The NCIL Employment / Social Security Subcommittee Co-Chairs have been pleased that meetings have been well attended and much interest has been shown in topics discussed and in projects being actively considered.

First and foremost, the Subcommittee has been steadily progressing with regard to its two policy initiatives to enhance employment incentives for people with disabilities of retirement age; both initiatives have been deemed “reasonable” upon scrutiny by the Social Security Administration but require Congressional action:

  1. Eliminating the termination age (65) of MBI’s within the authorization language of the Ticket-to-Work-Work Incentive Improvement Act of 1999 (TTWWIIA)

NCIL logo - National Council on Independent LivingThe Subcommittee had a meeting with minority staffer for House Energy and Commerce Committee (committee of jurisdiction) and the proposal was received with support. Additional information requested was forwarded. A meeting with majority staff was agreed upon but has been delayed.

This proposal would simply align Medicaid Buy-In (MBI) authorization language within the TTWWIIA with parallel language within the Balanced Budget Act (1997), language which does not contain a termination age. More people with disabilities at/above retirement age desire to and are able to work and should not need to encounter a “spend-down” to retain vital Medicaid services (such as attendant care). They should not need to lose everything they have earned to retain such services – services needed, in turn, to be employed and socioeconomically productive.  [Read more…]

Veterans and Peer Support: An Update from the NCIL Veterans Subcommittee

By David Koch, NCIL Veterans Subcommittee; Independent Living Specialist and Assistive Technology Specialist, CILWW

Peer support is one of the core services offered at Independent Living Centers across the country and is considered a helping relationship between an individual who has experience living with certain conditions assisting another person to cope and adapt to similar circumstances. Peer mentoring is at the heart of the peer support model; this is an opportunity for peer mentors to use their own personal experience of living with a disability to empower others in reaching their goals.

NCIL logo - National Council on Independent LivingThe peer support component of IL fits well with the Vet to Vet framework. However, Veterans’ peer support or Vet to Vet peer support has its own nuances to traditional peer support. Fellow Veterans connect better as peer mentors in the peer support process. Finding and training mentors can be a challenge with less than ten percent of the US population being Veterans (2014 VA estimate).

There are many different frameworks, but Veteran to Veteran is the most common and often the most successful because of a common bond. The Department of Veterans Affairs recognized this need for peer support. Smaller non-VA programs are just for combat Veterans while others are open to all Veterans and a few to include the Veterans’ families. As a Veteran who has made the transition to civilian life, the transition was and is not always easy. For some Veterans, especially when dealing with mental health challenges or issues such as depression or PTSD, it can be a tough road. They are often the Veterans disenfranchised by the VA, yet in real need of peer support.  [Read more…]