the advocacy monitor

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

Civil Rights & the ADA

NCIL Executive Director Selected for Ibram X. Kendi’s Antibigotry Convening

The National Council on Independent Living (NCIL) is pleased to announce that its Executive Director, Reyma McCoy McDeid, has been selected to serve as a Fellow for Dr. Ibram X. Kendi’s Antibigotry Convening.  Dr. Kendi, author of the best-selling book, How to be an Antiracist, is the founder of the Center for Antiracist Research at Boston University, which is home to the Antibigotry Convening, a program that “aims to define bigotry in structural terms, examine the ways that structural bigotry harms diverse communities, generate an antibigotry policy report, and motivate an antibigotry movement. The project will involve a series of virtual workshops in the Fall of 2021, and will culminate in a virtual symposium in January of 2022.”


As the sole representative of a disability organization to participate in the Antibigotry Convening, Reyma further positions NCIL as a wayshower at the intersection of race and disability.  From Reyma: “This is an incredible opportunity- not only for NCIL, or the disability community, but for society at-large because we are finally starting to see that not meeting the needs of racially marginalized disabled people- either unintentionally or intentionally- is a form of ableism, as discussed by Dr. Kendi and Rebecca Cokley earlier this summer.  For many in IL, this is a way of looking at ableism that might feel unfamiliar.  But, if you’ve ever wondered why your CIL has struggled to engage with racially marginalized consumers, then not understanding how the disability experience for racially marginalized consumers- including how ableism manifests in their lives- may be a part of the issue.  I look forward to taking what I learn during my time as a Fellow with the Antibigotry Convening to further support NCIL’s member network in providing the Core Services to racially marginalized consumers in ways that are transformative- both for consumers, but for IL, as a movement.”


More information on the Antibigotry Convening can be found by visiting the website.

It’s National Disability Voter Registration Week!

The week of September 13-20, 2021 is National Disability Voter Registration Week (NDVRW)! NDVRW was created by the REV UP Campaign to increase the political power of people with disabilities. The REV UP Campaign was created by the American Association of People with Disabilities (AAPD). NCIL is proud to be a partner organization for National Disability Voter Registration Week.

This week, Centers for Independent Living and disability rights organizations around the country will be celebrating NDVRW through events and activities to encourage people with disabilities to vote. There are many ways to get involved!

Check the National Disability Voter Registration Week calendar of events. Organizations around the country will be holding events to celebrate voting all week long. These events include local and state forums, training webinars, voter registration events, and more.

[Read more…]

From Voting Rights to Running for Office: Disability and the Political Process with NCIL’s Executive Director

Dear NCIL Members and Friends,

I was the first openly autistic individual to run for state legislature in US history. I was also the first state legislative candidate to bring up the issue of using campaign funds to pay for caregiver expenses. My Center for Independent Living was in Iowa, where the national political process starts. It starts when the Presidential primaries are held. Voters in Iowa have big meetings and decide on who they think each party should select as their Presidential candidate. These big meetings are called caucuses.  Disabled people in Iowa were not able to participate in these meetings. Our CIL organized meetings so people with all types of disabilities could be a part of the caucuses. 

All this is to say, I came to the National Council on Independent Living (NCIL) with a deep commitment to ensuring that disabled people can participate in all political processes.  

The cornerstone of the political process is the polling place. I am proud that NCIL has, time and time again, shown its support for ensuring that all eligible voters have access and ability to vote on or by election day. 

NCIL operates a subcommittee that focuses specifically on voter rights.  NCIL has an employee who works on projects specific to voting rights. NCIL recently joined several other disability organizations in signing on to a letter authored by the National Disability Rights Network (NDRN) in support of the John Lewis Voting Rights Advancement Act. From the letter:

Following the record-breaking turnout in the 2020 elections, state legislatures across America have released an offensive onslaught of undemocratic legislation designed to specifically suppress the vote of voters with disabilities, voters of color, and youth voters.

These actions were made possible beginning in 2013 when the United States Supreme Court struck down key provisions of the Voting Rights Act (VRA) of 1965 in its Shelby County v. Holder decision; In the Shelby County ruling when the Supreme Court struck down the primary avenue to determine which states require preclearance, it immediately freed jurisdictions with known discriminatory practices to change how their elections are administered without the voter protections offered by federal preclearance… Following the enactment of strict voter identification laws, voter purges, and polling place closures, not all voices are being heard on Election Day, and worse, they are being deliberately silenced.

The American Association of People with Disabilities (AAPD), the National Association of Councils for Developmental Disabilities (NACDD), NCIL, and NDRN strongly urge Congress to protect and restore voting rights in America through the enactment of the John Lewis Voting Rights Advancement Act.

The letter calls out the actions of state legislatures on voting issues. There was a Supreme Court decision in 2013 that made the actions of these states possible. That case was Shelby County v. Holder. It reversed the federal law that made sure states did not discourage people from voting. These protections were especially important for disabled voters, and Black and brown voters. The letter NCIL signed supports the John Lewis Voting Rights Advancement Act.  

NCIL’s commitment to ensuring participation of disabled people in the political process extends beyond the polling place and onto the ballot itself thanks to Elevate, the landmark training program designed specifically for candidates with disabilities, designed and led by people with disabilities. Elevate has been a part of NCIL portfolio for over two years. Elevate’s commitment to operating at the intersection of race and disability has been a key part of the program since day one. Elevate kicks off its relaunch in October. Spread the word. If you are a disabled person who’s interested in running for office, register! It’s FREE for NCIL individual members so be on the lookout for further details from us.

In Solidarity,

Reyma McCoy McDeid

This statement is written in plain language.

A Right to Vote and A Right to Health for All: Co-liberation as the Only Path Forward

By Maddie Offstein, NCIL Summer Policy Intern

Although the U.S. has formally abolished the Jim Crow laws and poll taxes, many states are ramping up efforts to revisit their laws on voting policies and procedures after the 2020 Presidential election and creating significant barriers for many in participating in future elections. Since start of the new year alone, 18 states have enacted 30 new laws that restrict access to the ballot. Most noteworthy is the successfully passed legislation in Georgia, a state whose presidential election results were decided by a mere 11,779 votes. The law, S.B.202, includes 16 key provisions that either restrict the right to vote for some Georgia residents or transfer power from elections officials to state legislators. The major changes to state voting requirements are as follows: a shortened time period to request absentee ballots, stricter ID requirements for absentee ballots, a significant reduction in the number of ballot drop boxes (with an additional requirement that they are placed inside frequently inaccessible buildings), an almost complete elimination of mobile voting centers, and misdemeanor charges for those who offer food or water to those waiting in long polling lines. These changes will have the impact of curtailing voting access for disabled, low-income, and racially marginalized people – so egregiously that the Justice Department is suing the state on the grounds that Republican lawmakers pushed a bill through the State legislature with an intent to deny Black voters equal access to the ballot. In addition to many civil rights groups, disability rights-focused groups such as The Arc Georgia, Georgia ADAPT, and the Georgia Advocacy Office (GAO) have joined the case and added a complaint that S.B. 202 violates both the Americans with Disabilities Act and the Rehabilitation Act of 1973. This is the first-time disability rights organizations have joined, as plaintiffs, a major voting rights lawsuit.

[Read more…]

Last Chance to Sign on to REAADI & DRMA Support Letters: Due this Friday!

Earlier this month, Senator Casey (D-PA) and Congressman Langevin (D-RI) reintroduced the Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act (S. 2658 / H.R. 4938), and Senator Casey and Congressman Panetta (D-CA) reintroduced the Disaster Relief Medicaid Act (DRMA) (S. 2646 / H.R. 4937). You can find more information about these two critical bills, including information about the bills, previous alerts, our archived Stakeholder Meetings, and our Disability Equity During Disasters toolkit at our REAADI for Disasters Act and DRMA web page.

NCIL is grateful to Senator Casey, Congressman Langevin, and Congressman Panetta for taking the lead on these important bills that will help address and dismantle the barriers disabled people face before, during, and after disasters. We will be sending letters expressing our strong support for these efforts, and the dire need for the REAADI for Disasters Act and DRMA to be passed and implemented quickly.

Please join these sign-on letters expressing your organization’s strong support for these bills and thanking Senator Casey, Congressman Langevin, and Congressman Panetta for their leadership!

Sign your organization on to our REAADI for Disasters Act & DRMA Support Letters!

If this form is not accessible to you, or if you have any questions, you can email reyma@ncil.org with:

  • your organization’s name exactly as you would like it listed
  • whether you are a national, state, or local organization
  • what state you are in (if state or local)
  • and your preferred email address (for internal purposes only)

Join us for a REAADI & DRMA Disability Community Stakeholder Call This Friday!

NCIL is excited by last week’s reintroduction of the Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act (S. 2658 / H.R. 4938) and the Disaster Relief Medicaid Act (DRMA) (S. 2646 / H.R. 4937). The REAADI for Disasters Act and DRMA are two essential bills that will help address and dismantle the barriers disabled people face before, during, and after disasters.

In an effort to coordinate advocacy efforts and drum up support for these critical bills, NCIL held two stakeholder calls for the Independent Living network earlier this week. On these calls, NCIL, Congressional representatives, and invited guests celebrated the reintroductions and discussed the many ways to take action to get the REAADI for Disasters Act and DRMA passed into law.

Next week, NCIL will be hold another stakeholder call for members of the disability community outside the Independent Living network. On this call, attendees will have the opportunity to hear from speakers from a range of disability organizations about their disaster-related efforts, how engaging their disabled consumers / constituents made their efforts more successful, and how they plan to fight for the REAADI for Disasters Act and DRMA. Attendees will learn about opportunities for collaboration and will have the opportunity to ask questions. We hope you will join this call, and please feel free to forward the information about this call to others who may be interested!

The Disability Community Stakeholder Call will be on Friday, August 20, 11:00 a.m. – 12:00 p.m. Eastern. The call will be held as a Zoom webinar. ASL interpreting will be provided. CART captioning will be available in the Zoom platform and at a separate Streamtext link. Please email lindsay@ncil.org if you have any questions or need any other accommodations. Please submit requests for other accommodations at least 24 hours before the event.

The Disproportionate Impact of Vaccine Mandates on Disabled People

By Hanalei Steinhart, NCIL Summer Policy Intern

The United States has recently seen a nationwide resurgence of Covid-19 alongside a push to return to in person work. Many people feel safe to do so as they have been vaccinated, however, insufficient people have been vaccinated to slow the spread of Covid-19. The continued spread of Covid-19 and its variants endangers disabled people who are unable to get vaccinated or will not gain immunity from a vaccination. Many authorities are implementing vaccine mandates to address the continued spread of disease. However, vaccine mandates disproportionately impact people who cannot get vaccinated or are unlikely to develop immunity. Vaccine mandates also force disclosure of disabilities or other medical conditions which may lead to an increase in discrimination.

There are multiple groups of people who have refused vaccination or are unable to get vaccinated. Some of those people are those typically termed “anti vaxxers” who refuse all vaccinations for a variety of reasons including political or religious ones. Others are hesitant about getting a vaccine for a variety of reasons such as African Americans concerned about the government’s history of medical abuse and experimentation in the US. Another group who has often been overlooked are those people who are unlikely to develop immunity from the vaccine. Lastly, some people are unable to get vaccinated for medical reasons. The refusal of those who are eligible and able to get vaccinated has led to an increased spread of Covid-19 that disproportionately impacts the lives of disabled people.

Herd immunity is based on the principle that when a sufficient number of community members are vaccinated, a disease no longer has enough susceptible people to let it travel through the community (Mayo Clinic). This protects the few that are unvaccinated because they are unlikely to encounter the disease. A vaccine mandate is a tool to protect people who cannot be vaccinated. It is issued by a relevant authority and requires individuals to either provide authentic proof of vaccination or disclose their reason for not being vaccinated (CDC).

[Read more…]

­Reminders & Updates on REAADI & DRMA: Stakeholder Meetings, Toolkit Release, and Sign-on Opportunity!

NCIL is excited by the reintroduction of the Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act (S. 2658 / H.R. 4938) and the Disaster Relief Medicaid Act (DRMA) (S. 2646 / H.R. 4937) Thursday in the Senate and Friday in the House. The REAADI for Disasters Act and DRMA are two essential bills that will help address and dismantle the barriers disabled people face before, during, and after disasters.

Reminder: Join us for a Stakeholder Meeting!

We would like to remind you to join NCIL, Congressional representatives, and invited guests for a Stakeholder Meeting this week! Join us to celebrate the reintroductions and learn how you can take action to get the REAADI for Disasters Act and DRMA passed into law. We are hosting two Stakeholder Meetings to accommodate multiple time zones. The same information will be presented on both calls.

Stakeholder Meeting 1

When: Tuesday, August 10, 11am – 12pm Eastern

Register for this call 

Stakeholder Meeting 2

When: Thursday, August 12, 3pm – 4pm Eastern

Register for this call

Both meetings will be held as Zoom webinars. ASL interpreting will be provided. CART captioning will be available in the Zoom platform and at a separate Streamtext link. Please email lindsay@ncil.org if you have any questions or need any other accommodations. Please submit requests for other accommodations at least 24 hours before the event.

Check out our Toolkit!

To coincide with the reintroduction of these important bills, we are releasing Disability Equity During Disasters: A Toolkit for Passing the Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act and the Disaster Relief Medicaid Act (DRMA). This toolkit contains information on both bills, as well as tools for organizations and advocates to take action and get these bills passed!

Sign our REAADI for Disasters Act & DRMA Support Letters!

NCIL is grateful to Senator Casey, Congressman Langevin, and Congressman Panetta for once again taking the lead on these important bills. We will be sending letters expressing our strong support for these efforts, and the dire need for the REAADI for Disasters Act and DRMA to be passed and implemented quickly. Please join these sign-on letters expressing strong support for these bills and thanking Senator Casey, Congressman Langevin, and Congressman Panetta for their leadership.

You can sign on to these letters by using the online form by Thursday, August 12.

If this form is not accessible to you, or if you have any questions, you can email lindsay@ncil.org with:

  • your organization’s name exactly as you would like it listed
  • whether you are a national, state, or local organization
  • what state you are in (if state or local)
  • and your preferred email address (for internal purposes only)

REAADI for Disasters Act and DRMA Reintroduced Today: Join Us for a Stakeholder Meeting Next Week!

NCIL is excited by yesterday’s reintroduction of the REAADI for Disasters Act (S. 2658) and DRMA (S. 2646), and we invite you to join us for a Stakeholder Meeting next week!

The Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act and Disaster Relief Medicaid Act (DRMA) are two essential bills that will help address and dismantle the barriers disabled people face before, during, and after disasters. The REAADI for Disasters Act will help ensure the diverse voices of disabled people and older adults are included in disaster preparation, response, recovery, and mitigation. It will ensure states and localities can better include and support disabled residents through the creation of a national network of training and technical assistance centers. It will require a review of spending to ensure compliance with the Americans with Disabilities Act and a review of the extent to which disabled people’s civil rights are upheld during and after disasters. It will also recognize and strengthen the role Centers for Independent Living (CILs) play in local disaster response. DRMA will help ensure disabled people who are forced to move out of state because of disasters are able to keep their Medicaid services. DRMA would provide states with resources and supports to enable this change, including a time-limited increased FMAP.

NCIL and our allies have worked to address the disaster-related needs of disabled people for years. Over 15 years ago, NCIL’s Emergency Preparedness Task Force (now a permanent NCIL Subcommittee) was the first formal disability community effort to address this issue. Several years later, NCIL entered into a Memorandum of Understanding (MOU) with the Federal Emergency Management Agency (FEMA), and later entered into an MOU with the American Red Cross (ARC). When they failed to hold up their end of the bargains, NCIL canceled the American Red Cross MOU and allowed the FEMA MOU to expire – but we have never let up the pressure on either of them to meet their obligations to our community.

Additionally, NCIL entered into an MOU with Portlight Strategies, which was instrumental in supporting disaster-impacted CILs and the people and communities they support. That partnership has continued, with NCIL hosting a full-time Portlight Fellow in 2019 to build a political and community support for the REAADI for Disasters Act and DRMA. NCIL has also worked closely with the Partnership for Inclusive Disaster Strategies as they’ve led drafting of this critical legislation.

Now, we need all hands on deck to get these bills passed. Disabled people and older adults are two to four times more likely to die or be seriously injured during disasters. This is the direct result of discrimination and exclusion from disaster planning, response, and recovery efforts. We need the REAADI for Disasters Act and DRMA.

[Read more…]

NCIL and FEMA Collaborate on #ADA31 Blog: Three Ways the ADA Supports Equity and Independence for People with Disabilities

NCIL’s new Executive Director, Reyma McCoy McDeid, recently collaborated with the Federal Emergency Management Agency (FEMA) to create a blog in recognition of the 31st anniversary of the Americans with Disabilities Act. Emphasizing the importance of Independent Living networks feeling empowered to create partnerships with emergency preparedness providers at the local level as an important diversion from institutional settings tactic, it also incorporates the federal-level mandates that can support these efforts.