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

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.

NCIL’s Commitment to People with Intellectual Disabilities

Accessibility and inclusion are very important. They are important for all people with disabilities. The Centers for Disease Control (CDC) says that there are 6 million people with intellectual disabilities. The National Council on Independent Living (NCIL) wants to make sure that people with intellectual disabilities can be members and leaders, just like any other person with a disability. This is why we want to make changes to everything that we do. We want to make sure that NCIL is accessible and inclusive to people with intellectual disabilities. This includes our meetings, rules (also called “bylaws” or “standard operating procedures”), trainings, conferences, and how we talk with our members.

The people that work at NCIL have wanted to do this work for a long time. We met last year and made a plan. But, because of COVID-19, our work at NCIL had to change. We had to spend more time doing things we didn’t normally do in order to work from home. We had to spend a lot of time focusing on new issues. We have not been able to work on the plan we made as fast as we thought we would.

But, we are still committed to making sure that we are accessible and inclusive to all people with disabilities. Another word for “commitment” is “promise”. We promise to do this work and are starting to do what we can right now. One thing that we are starting is writing our statements in plain language as much as we can. That is just one thing we are doing, and we know that there is a lot more work to do.

While we are working to make NCIL accessible and inclusive to people with intellectual disabilities, we are also learning more about what works. These are called “promising practices.” We want to share what we are learning with other organizations that serve people with disabilities, too. One promising practice is this: instead of writing plain language versions of statements, we are sometimes writing statements only in plain language.

The most important part of this work will be making sure that people with intellectual disabilities can also be leaders and employees at NCIL. This is how people with intellectual disabilities can help make these commitments a reality. NCIL’s new executive director, Reyma, was the executive director of a Center for Independent Living (CIL). Her CIL helped many people with intellectual disabilities with their careers. Before Reyma worked at that CIL, she led Iowa’s largest community-based program that helped people with intellectual disabilities with their careers. Reyma would like to use her skills to make sure that NCIL is a place where everyone, especially people with intellectual disabilities, can work and be a leader.

If you have any questions about NCIL’s commitment to making sure we are accessible and inclusive to people with intellectual disabilities, please contact Reyma at reyma@ncil.org.

IL-NET T&TA Center Presents… A National Webinar: How CILs Can (and Should!) Support Consumers in the Criminal Legal System

September 28, 2021; 3:00 – 4:30 p.m. Eastern

Register online

We all know that Centers for Independent Living (CILs) are required to assist with transition (and diversion) from nursing homes and other institutions. Most CILs are uniquely skilled and adept at nursing home transition, but “other institutions” can be challenging for CILs to define and approach. Join us to learn how two CILs have built successful programs to help people with disabilities transition out of (or avoid) the criminal legal and prison systems. Transitioning back to the community from these circumstances presents its own unique challenges and takes particular skills, considerations, and lived experiences to get it right, but it is necessary and achievable.

CILs can (and should!) be supporting consumers in the criminal legal system. Join this free webinar to learn how two CILs have done just that – and how you can, too!

Registration Fee: This event is free-of-charge.

Target Audience: Executive Directors, program staff, and board members of Centers for Independent Living.

[Read more…]

Take Action to Ensure Full Funding of HCBS in the Reconciliation Package!

The House of Representatives expects to finalize the budget reconciliation package this week before sending it off to the Senate. Negotiations are still underway, but things are moving quickly, and action is needed now to ensure the disability community’s needs are met! 

As we mentioned in our previous alert, the current package proposes funding home and community based services (HCBS) at $190 billion. While this number is more than House negotiators started with – largely because of the advocacy of the disability and labor communities! – it is less than half the amount promised in President Biden’s American Jobs Plan, and not nearly enough to meet the needs of disabled people across the country.

Millions of our people are still stuck in institutional settings. Over 800,000 are on waiting lists for HCBS – many who will wait years before receiving the supports and services they need. Congregate settings have been – and continue to be – hit hard by COVID-19. The direct support workers who keep us safe in our homes and the work they do have been undervalued for years, both because providing services to disabled people is not seen as valuable, and because many of these workers are Black and brown women. Improving wages and benefits for our in-home workers values the work being done and the people doing the work. Investing in HCBS is critical to protecting disabled people and our direct support workers, and the COVID-19 pandemic has made it more urgent than ever.

Take Action!

President Biden proposed a major investment in HCBS, and Congress introduced the Better Care Better Jobs Act (BCBJA) to put that proposal into action. We need Congress to fully fund HCBS in the budget reconciliation package! Our Members of Congress need to hear from us NOW as they wrap up negotiations and finalize the package. 

Contact both your Senators and your Representative today! Tell them they MUST meet the needs of their disabled constituents and the direct care workforce in the reconciliation package! 

More information – including how to contact them and a sample script – are below.

[Read more…]

2021 Annual Conference on Independent Living Wrap-Up

NCIL’s 2021 Annual Conference on Independent Living Wrap-Up is now available online.

The wrap-up provides details about NCIL Governing Board elections; resolutions passed by the membership; award winners and sponsors; a summary of the 2021 Day on the Hill; a youth update; and access to our Opening Plenary and Closing Keynote.

NCIL’s 2021 Annual Conference on Independent Living was a powerful experience. We would like to thank the NCIL membership, our conference attendees, sponsors, exhibitors, advertisers, presenters, guest speakers, staff, and everyone involved in crafting this virtual event into an unforgettable experience.

2021 Annual Conference on Independent Living Logo - LIBERTY, INDEPENDENCE, FREEDOM, EQUITY. Presented by NCIL. Graphic features a line art drawing of three pulmeria flowers.

FEMA Holds Stakeholder Call to Discuss Best Practices in Federal, State and Local Collaboration

Source: FEMA Office of Disability Integration and Coordination

Join the FEMA Office of Disability Integration and Coordination (ODIC) on September 22 at 2:00 p.m. Eastern Time to learn how successful collaborations between community organizations and the federal government are positively impacting the lives of people with disabilities before, during and after disasters.

[Read more…]

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…]

Urgent Action Needed to Ensure Full Funding of HCBS in Reconciliation Package!

Members of Congress have been hard at work preparing the budget reconciliation package. Negotiations are well underway, with language trickling out and more details expected in the coming days. Recently it has come to light that the proposal may contain only $190 billion in funding for home and community based services (HCBS). This is less than half the amount promised in President Biden’s American Jobs Plan, and not nearly enough to meet the needs of disabled people across the country.

Millions of disabled people are stuck in institutional settings. Over 800,000 people are on waiting lists for HCBS – many who will wait years before receiving the supports and services they need. Congregate settings have been – and continue to be – hit hard by COVID-19. Investing in HCBS is critical to protecting disabled people and our direct support workers, and it is more urgent than ever.

Take action!

President Biden proposed a $400 billion investment in HCBS, and Congress introduced the Better Care Better Jobs Act (BCBJA) to put that proposal into action. We need to ensure the BCBJA and the full $400 billion get included in the budget reconciliation package! Our Members of Congress need to hear from us NOW as they wrap up negotiations and finalize the package.

Contact both your Senators and your Representative today! Tell them they MUST meet the needs of their disabled constituents and the direct care workforce by including the full $400 billion in the reconciliation package!

*Note: We need everyone to contact their Members of Congress. If your Representative is on the House Energy & Commerce Committee, it is especially critical that you call them today! The full list of Energy & Commerce Committee members can be found at energycommerce.house.gov/about-ec/membership.

More information – including how to contact them and a sample script – is below:

  • Call your Senators and Representative: Call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY). Ask to be connected to your Senators or Representative.
  • You can find your Senators’ phone numbers and websites at senate.gov and your Representative’s phone number and website at house.gov/representatives. If you don’t know who your Representative is, you can find out at house.gov/representatives/find-your-representative.
  • You can Tweet your Senators and Representative at tweetcongress.org.
  • You can use Resistbot to turn texts into faxes, mail, or hand-delivered letters by texting “RESIST” to 50409.

SAMPLE SCRIPT (please feel free to personalize):

Hi, my name is [YOUR FULL NAME], and I’m from [CITY, STATE].

I am [calling / writing] to urge [Senator / Representative NAME] to support the Better Care Better Jobs Act, and to make sure the full $400 billion is included in the upcoming budget reconciliation package. The BCBJA would providing much-needed funding that is needed now more than ever, to improve access to home and community based services (HCBS) and strengthen and expand the HCBS workforce.

Many disabled people and older adults rely on HCBS to live in our homes and participate in our communities. Currently, states are not meeting the needs of their disabled residents, forcing many people to remain on years-long waiting lists and others to be institutionalized. As we have seen, people in these settings are at much higher risk of infection and death from COVID-19. In light of the disproportionate COVID infection and death rates, improving access to HCBS is more urgent than ever. The BCBJA, and the full $400 million funding, would provide the critical and long-overdue investment to make this happen.

Thank you for your time. I hope I can count on your support for your disabled constituents by supporting the Better Care Better Jobs Act in the reconciliation package.

(Your name)

[IF LEAVING A VOICEMAIL OR EMAILING: please leave your full street address and zip code. This will ensure your call or email is tallied]

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.

NCIL Statement on National Preparedness Month

September is  National Preparedness Month. This promotes the importance of disaster planning in the US. This year’s theme is “Prepare to Protect. Preparing for disasters is protecting everyone you love.” At the National Council on Independent Living (NCIL), we love our members. We continue to put that love into action in many ways this National Preparedness Month:

-Immediately getting money raised this past weekend for our Disaster Relief Fund directly to members that experienced Hurricane Ida.

-Working with member organizations like Kelly’s Kitchen to ensure that we are able to continue to provide direct assistance to members that experienced Hurricane Ida.

-Connecting our members in New Orleans to NCIL partner Booster. Booster brings fuel to people where they are in many places in the US.

-Meeting with partners like FEMA and the American Red Cross to get needed supplies like bottled water and generators to the IL networks in Regions 4 and 6 who are responding to Ida and her aftermath

Supporting the IL network at regional and state levels as they coordinate systems advocacy activities. Activities include Congressional town halls, so people with disabilities can give real-life reasons why we support REAADI/DRMA. You can find out more about NCIL’s work to engage the IL network around these recently reintroduced bills by visiting our REAADI/DRMA page.

We thank the many donors who gave money to our Disaster Relief Fund because of Hurricane Ida. Special thanks to Kelly’s Kitchen, who made a matching gift that will make sure that almost two dozen members will have access to food. Find out more about Kelly’s Kitchen by visiting their website.

NCIL stands with the disability community in September, and every other month, as we face this latest natural disaster during the pandemic. NCIL reminds CILs that NCIL’s disaster response fund available if they need it. Support CILs that have been impacted by natural disasters by selecting “disaster relief fund” from the “select a campaign” drop box on NCIL’s donation page.

Every effort counts.

And, together, we can ensure that our people stay safe and in the community.

Because NCIL wants to do better at making sure that we are inclusive, this statement is written in plain language.