the advocacy monitor

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

As Hurricane Florence Approaches, Give Now to Aid CILs Damaged in the Storm

Hurricane Florence is approaching the coast of the Carolinas, with a path predicted to lead inland where it could drop unprecedented rainfall before dissipating early next week. This storm is predicted to be catastrophic and a wide swath of states have already declared states of emergency. Some areas could see up to 40 inches of rain and storm surges in excess of 10 feet.

NCIL logo - National Council on Independent LivingAs you already know, CIL services are crucial to help people with disabilities regain independence after disasters. CILs provide needed housing assistance, help navigate changes to benefits that may occur, and cooperate and advocate with local, state, federal agencies that arrive to provide emergency assistance, but so often fail to provide accommodations to people with disabilities. But CILs can’t help if their own facilities are damaged or destroyed.

NCIL’s Disaster Relief Fund distributes money specifically to Centers for Independent Living or 501(c)(3) Statewide Independent Living Councils damaged or destroyed in disasters. NCIL does not distribute money to individual disaster victims, but rather, gives money to CILs and SILCs so that they can repair, replace, or rebuild facilities and equipment in the wake of a disaster. Support from the NCIL Disaster Relief Fund made all the difference for CILs in the aftermath of Hurricane Katrina in 2005, the Iowa floods of 2008, and Hurricane Irma in 2017.

Since its inception in 2005, the Disaster Relief Fund has been funded by the generous support of NCIL members like you. 100% of these restricted funds will go towards the purpose outlined above. Please give what you can today.

Action Alert: Prepare for 2018 Midterms by Attending AAPD / DOnetwork Webinars

Are you ready to engage in voting rights advocacy for the disability community? The American Association of People with Disabilities’ REV UP (Register, Educate, Vote! Use Your Power) Campaign, in partnership with Disability Organizing Network, is hosting a series of free webinars on election accessibility this fall.

On September 21 at 2:00 p.m. Eastern, AAPD and DOnetwork will be hosting Access Barriers to Voter Education Materials. “The webinar will explore how political campaigns, hosts of candidate forums, and election officials can make their materials and information more accessible to people with disabilities. Webinar presenters include the National Council on Independent Living and the Center for Disability Empowerment.” You can register for this webinar at the DOnetwork website.

Stay tuned as other webinars and events are posted, including the next webinar in the series, which will be held in mid-October.

Kavanaugh Update

Confirmation hearings for Judge Brett Kavanaugh’s nomination to the U.S. Supreme Court have wrapped up, and a final vote on his confirmation is expected next week. NCIL strongly opposes this nomination.

NCIL logo - National Council on Independent LivingThroughout last week’s hearings we saw protests inside and outside of the hearing room, arrests, arguments among Senators, and repeated requests from Democratic Senators to delay the confirmation process. The drama surrounding these hearings illustrates how many people have concerns about Judge Kavanaugh’s confirmation, and we unequivocally share those concerns.

A review of Judge Kavanaugh’s past decisions on healthcare, self-determination, employment, education, civil rights, and voting rights (among others) have proven him to be dangerous for people with disabilities. We are thrilled that Liz Weintraub, the Association of University Centers on Disability’s Senior Advocacy Specialist, testified on Friday with a focus on Kavanaugh’s threats to people with disabilities, and particularly his decision in Doe v DC. You can view an uncaptioned video of the testimony or read a transcript. For more information on that decision and others, please refer to NCIL’s full statement of opposition.

Judge Kavanaugh will not protect our rights, and his appointment to the Supreme Court would pose major threats to our community for decades. If you live in a state with one of the below Senators, please call and tell them to Vote NO on Brett Kavanaugh’s confirmation:

  • Collins (R-ME)
  • Flake (R-AZ)
  • Heller (R-NV)
  • Murkowski (R-AK)
  • Rubio (R-FL)
  • Sullivan (R-AK)

Protect Our Voting Rights

Did you vote in your last election? If not, you’re not alone.

Over two million people with disabilities didn’t vote in 2016, and this isn’t just an issue of voter apathy. Study after study shows that our voting system is still inaccessible.

NCIL logo - National Council on Independent LivingNCIL wants to help YOU vote.

Today marks two months until the mid-term elections. This is your chance to elect representatives on all levels of government that understand the interests and priorities of the disability community. Will you make a donation to NCIL’s Voting Rights Fund today to help ensure that you have an accessible way to vote in November?

Yes! I will chip in $25 to help make our democracy accessible to all.

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

EMILY’s List Hosts Facebook Live on NCIL’s Campaign Accessibility Guide

Last Tuesday, NCIL Disability Vote Organizer Sarah Blahovec joined Muthoni Wambu Kraal, Vice President of National Outreach and Training at EMILY’s List, to discuss NCIL’s “Including People with Disabilities in Your Political Campaign: A Guide for Campaign Staff.” Discussing why NCIL wrote the guide, Blahovec said “we want to proactively encourage campaigns to become accessible…but we also wanted to give people with disabilities a resource to go campaigns that they want to work for and say ‘here, this can be done.” You can watch the captioned replay of the live stream on Facebook Black lettering with the words "EMILY'S List" underlined by an orange and yellow stripe

You Beat Voter Suppression in Georgia!

Last week, national media focused in on Randolph County, Georgia, where it was discovered that the Board of Elections planned to close seven of nine polling places due to alleged ADA violations. Outrage spread throughout the country as this community, whose voters are primarily people of color, faced the prospect of being forced to travel up to 15 miles without public transportation to a new polling place.

NCIL logo - National Council on Independent LivingAlerted to this news, NCIL members and other Georgia disability advocacy groups jumped into action. You joined with other advocates to tell Randolph County in no uncertain terms that exploiting the ADA to close polling places and disenfranchise voters of color is unacceptable. If a polling place is inaccessible, the legal obligation under the ADA is to make the polling place accessible, not to shut it down.

That’s the magic of NCIL’s grassroots network. We can mobilize advocates like you from targeted areas to address rights violations like those in Randolph County.

You won. Now, NCIL needs your help to continue to protect the right to vote. Here’s how:

CIL-NET Presents… A National Teleconference & Webinar – Supporting Youth in Transition: How CILs Can Contract for Youth Transition Services

IL-NET Logo - CIL-NET + SILC-NETCenters for Independent Living (CILs) are required to support young people with disabilities as they transition to adulthood. This “new” core service is hardly new anymore, but many of us are still trying to figure out the best ways to address it. Join us in September to learn how one CIL has built excellent youth transition services for young people in their community – and turned them into revenue generators for their CIL. LVCIL (Lehigh Valley Center for Independent Living) has spent a decade building programs for young people with disabilities, and getting paid by VR, schools, and other funding sources to do it. Our presenters will share the details of their programs, lessons learned along the way, and how you can get started or expand this work in your area.

You won’t want to miss this critical webinar. Sign up today!

Registration Fee: $75.00. Fee is per site (connection) and does not apply per participant; registrants are encouraged to gather as many individuals as desired to participate by telephone.  [Read more…]

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 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.

Reproductive Violence, Judge Kavanaugh, and the Legacy of Eugenics in the United States

Maggie Leppert, NCIL Violence and Abuse Subcommittee

NCIL logo - National Council on Independent LivingThe disability community has banded together to oppose Brett Kavanaugh’s nomination to the US Supreme Court. One reason for this opposition is Kavanaugh’s 2007 ruling in Doe ex rel. Tarlow v. D.l where he ruled against a group of disabled women who were forced to have elective surgery without their consent, including 2 women who were subjected to non-consensual abortions. Kavanaugh defended his decision by saying “accepting the wishes of patients who lack (and have always lacked) the mental capacity to make medical decisions does not make logical sense.”

Kavanaugh’s decision in this case is an example of state-sponsored reproductive violence, a form of gender-based violence that involves control of a victim’s reproductive systems and choices. Reproductive violence against people with disabilities is perpetuated today through sexual violence, forced sterilization / surgery, adoption restrictions, disparities in access to healthcare and reproductive education, and manipulative use of contraception.

Reproductive violence is a legal, social, and cultural phenomenon. This type of violence against disabled people can be traced back to the eugenics movement. In the early 1900s, in an attempt to eliminate “feeble-minded” populations and curtail “unfit” reproduction, tens of thousands of people with actual or perceived disabilities were forcibly sterilized. Many of these compulsory sterilization laws stayed in place until the 1980s. Today, sterilization for adults and children with disabilities is still common, while the legacy of eugenics lives on in the assumption that disabled lives are seen as inherently sad, easily controllable, and in need of prevention or, even worse, elimination.  [Read more…]