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

IL-NET T&TA Center Presents… A National Webinar: Know Your Resources — Orientation to the IL-NET National Training & Technical Assistance Center for CILs and SILCs

January 13, 2021; 3:00 – 4:30 p.m. Eastern

Register online

The IL-NET National Training & Technical Assistance (T&TA) Center, operated by ILRU in collaboration with NCIL, APRIL, and the University of Montana Rural Institute and RTC: Rural, supports Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs) in building capacity to run strong, effective organizations. The IL-NET’s resources cover an expansive list of topics related to CILs and SILCs, with an emphasis on core services. The scope of the center’s offerings is broad. This webinar will highlight what’s new with the IL-NET and help you learn how to find the resources and training available through ILRU’s comprehensive website that best meet your needs. Our IL-NET team is here to assist you with finding the publications, recorded trainings, courses, and materials that will help you operate your CIL or SILC with excellence.

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Action Alert: Federal Funding and COVID-19 Update

The House of Representatives passed a one-week stopgap spending bill introduced by House Democrats earlier this week. The spending bill would extend funding for the federal government by one week, providing another week for Congress to negotiate details of a larger spending package and avert a government shutdown.

The continuing resolution (CR), H.R. 8900, changes the government funding deadline from December 11, 2020 to December 18, 2020. It also provides that one-week extension for several programs, including the Money Follows the Person program and Home and Community Based Services (HCBS) Spousal Impoverishment protections.

The Senate will likely vote on Friday. Assuming the bill passes, this gives Congress a week to iron out the details of a larger spending package to fund the government for the rest of fiscal year 2021. It is unclear whether that week will be enough time to reach an agreement, but many members of Congress seem optimistic.

The extra week also gives Congress time to iron out the details of a much-needed COVID-19 relief package, which Congressional leaders say will likely be paired with the spending package. Just yesterday, a bipartisan group of lawmakers released an outline of their $908 billion proposal (PDF). However, disagreements between Congressional leaders continue over key provisions, including the dangerous liability shield, and state and local funding.

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Contact Congress Today about COVID-19 Relief!

Congress is once again attempting to find some way to pass much-needed COVID-19 relief. Last week, a bipartisan group of Senators and Representatives unveiled a $908 Billion package for a COVID-19 compromise proposal. Read the overview of that plan (PDF). Shortly after, Senator McConnell announced his own plan. Negotiations between both parties and chambers are ongoing, but importantly, neither of the proposals so far addresses the needs of the disability community.

Our Members of Congress need to hear from us again. They need to hear how critical it is to address the needs of their disabled constituents in this COVID-19 package. In particular, they need to include targeted funding for home and community based services (HCBS) to keep people out of congregate settings where COVID-19 is spreading rapidly; an FMAP increase to ensure Medicaid and state government can meet the needs of their residents; and permanent reauthorization and funding for the Money Follows the Person (MFP) program to help get people out of dangerous congregate settings where COVID-19 is rampant. They also must NOT include the dangerous liability shield included in the Senate’s HEALS Act that would protect businesses (including schools, medical providers, and more) from being held responsible for harm they cause in almost all circumstances. You can see a longer list of priorities in this letter from CCD (PDF), of which NCIL is a member.

TAKE ACTION: Contact your Members of Congress to tell them we need a COVID-19 relief bill, and we need it to address the needs of the disability community!

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Elevate Blog: Want to Run for Office? Think Local

Did you know that there are 519,682 elected positions in the United States? When we think of elected officials, we often think about the President and members of Congress. However, there are only 542 federal offices. Our state governments make up only 3.6% of the elected positions in the country. Local elected officials are 96% the elected officials in the country. There are over 500,000 local elected positions in the country.

If you are considering running for office for the first time, think local. There are many different positions in local government, such as:

  • City council
  • Mayor
  • School board
  • County commissioner
  • Positions requiring specific knowledge, like auditor or coroner

Each local government has a different structure, and different elected offices. You should research what positions are available in your community. Think about how you want to be involved in your community. Do you want to change laws? Are you interested in education? Do you have specific skills in an area like finance or engineering? Some offices require specific knowledge and training, while others are open to everyone.

Holding a local office allows you to serve your community directly. Big, sweeping legislation at the national level is important. But the fact is that local government has a large influence on our lives. School board members make decisions on education for children in their community. Mayors and city councils make many small and large decisions to run a city. Local government influences law, finances, education, community programs, and more.

Running for local office makes practical sense for a first-time candidate. It costs money to get on the ballot and to run a campaign. A local campaign usually requires a smaller budget than state or federal races. A local campaign may require a smaller time commitment, and you may be able to keep your current job. Keeping your job is important if the position you’re running for doesn’t have a salary or has a low salary.

Local campaigns make strategic sense as well. If you want to run for a larger office someday, you need to build name recognition. Having name recognition means that voters know who you are and what you represent. If you are active in your local community, you may have name recognition. You may be known as a community member, a volunteer, or an advocate, for example. In a campaign, you build more name recognition through campaigning. This lets voters know who you are and why they should vote for you. Running for and serving in local office can help build name recognition for future state and federal races. It will also help you gain experience that will make you a better candidate in future races.

Have we convinced you to consider running for local office? Here are some resources to learn more:

New Report: Challenging the Use of Algorithm-driven Decision-making in Benefits Determinations Affecting People with Disabilities

Last month, the Center for Democracy & Technology (CDT) released a new report called Challenging the Use of Algorithm-driven Decision-making in Benefits Determinations Affecting People with Disabilities. The report focuses on algorithm-driven tools that reduce or terminate public benefits. It analyzes how people with disabilities and their lawyers have challenged these tools in court.

In the report, CDT cites several important court decisions when describing states’ constitutional requirements and their obligations under the Administrative Procedure Act and the Americans with Disabilities Act. Some cited cases require states to provide notice to recipients prior to algorithm-driven cuts to benefits, and to provide enough information for people to know how to contest algorithms’ results. Other cases require states to inform the public that they are planning to use the tools and to allow people to submit comments prior to implementation.

The report also describes institutionalization as a form of discrimination on the basis of disability, because it isolates disabled people from the community. Plaintiffs have shared that their care hours were cut almost in half. When algorithm-driven tools cause such deep cuts to supports and services, people with disabilities may have to go to institutions to receive necessary care that they should be able to get at home.

CDT’s recommendations to state governments, attorneys, and disabled self-advocates flow from a few key takeaways. First, when states implement an algorithm-driven tool to make benefits determinations, they are making a policy decision that affects people’s lives and evokes new legal and constitutional questions. Second, disabled people and other experts on algorithms know best the impact of algorithm-driven benefits determinations, so they should drive attorneys’ litigation and advocacy strategies. Finally, in addition to litigation, self-advocates have several avenues to call attention to unjust algorithmic tools, including social media, public government meetings, and the press.

COVID-19 Updates

COVID-19 rates are once again surging across the country. Infection rates and hospitalizations are rising. The US has surpassed 11 million cases and has reached nearly 250,000 deaths. Cases and deaths in congregate settings are, once again, rising disproportionately, with a recent report finding COVID-19 cases in nursing facilities have risen fourfold in many states in this latest surge; and we know people in other congregate settings are facing the same dire situation.

Congress is still stalled on their COVID-19 relief efforts. While both the House and the Senate listed passing another COVID-19 relief bill as a post-election priority, major disagreements on how to move forward remain. With the election behind us, we will need to ramp up our advocacy efforts once again to get Congress to pass the pandemic relief we so desperately need. 

President-elect Biden and Vice President-elect Harris, however, have gotten to work. Last week they named the members of their coronavirus task force, who will work to develop a plan for fighting COVID-19 under the new Administration. See the list of members and brief descriptions. They also launched their transition website, buildbackbetter.com, which includes an outline of their plan to beat COVID

Another announcement that came out last week is Pfizer and BioNTech’s news that their vaccine candidate is showing 90% effectiveness after an initial analysis. Then, this week, Moderna also announced their vaccine is over 90% effective. Both companies expect to be ready to apply to the Food and Drug Administration (FDA) for emergency use authorization by the end of the month. Per their announcements, Pfizer expects to have 50 million doses available globally by the end of the year (each regimen requires two doses) and up to 1.3 billion doses available during 2021; Moderna expects to have 20 million doses ready to ship in the US by the end of 2020 and estimates it can make 500 million to 1 billion doses next year. While this is great news, experts are cautioning that it will still take many months before the vaccine is widely available, and there are still some questions remaining, including how long immune protection lasts, how effective it will be for different groups of people (including immunocompromised people), and how distribution will play out. That said, this is incredibly promising, and there are currently two other vaccine candidates still in trials that expect to have results as early as next month.

We will continue to keep you updated as new information becomes available or as advocacy is needed.

Elevate Blog: Fundraising and the Power of Disabled Leadership: Interview with Dom Kelly

Elevate Logo - Campaign Training for People with Disabilities. Graphic features the US Capitol Rotunda.

Dom Kelly works for Fair Fight, a voting rights organization founded by Stacey Abrams and based in Atlanta, Georgia, where he helps lead fundraising efforts for both the organization’s PAC and 501(c)(4). He is also a person with Cerebral Palsy who is passionate about disability justice and building political power within the disability community. He took the time to tell us why it’s important for people with disabilities to run for office, and to share his wisdom about fundraising.

Why do you think it is important for people with disabilities to run for elected office?

Dom: I am extremely passionate about getting disabled people to run for elected office, and there are a couple reasons I think it’s important. The first is that lawmakers who understand what it’s like to be disabled can create and uphold laws that actually benefit folks with disabilities. Too often we see that the disabled community is ignored and disregarded; COVID-19 and the events surrounding the pandemic has really brought to light what we in the community have known to be true, which is that our lives are often considered expendable. Lawmakers think nothing of taking away our access to affordable healthcare if it’s politically beneficial to them. Congress’s inability to address issues like gun violence, systemic racism, and police brutality mean that the disabled community is even more at risk of being harmed. Some politicians engaging in voter suppression have actively tried to take away our right to vote. All of these are just some examples of what we could be addressing through a disability lens if people with disabilities ran and won elected office. Second, I believe representation matters. As a kid, I rarely if ever saw people on TV, whether they be characters, actors, politicians, or news anchors, who were disabled like me. Seeing someone with a disability in a leadership and decision-making role can go a long way in cultivating confidence and power among folks in our community. “Identity politics” is a dirty term among some, but not for me – identity is vital for our survival.

Some people who want to run for office are afraid of having to ask for money. How can people who are afraid of fundraising get comfortable with it?    

Dom: Like it or not, raising money is a necessary activity for any organization, campaign or otherwise. The first time getting on the phone to ask someone to give can be scary, but it gets easier with each ask. It may be easier to start by planning an email or social media fundraising campaign before you start asking for larger amounts of money. At the end of the day, though, you are really selling yourself and your vision to voters, so if you feel confident in your candidacy and your platform, you’ll be able to get more comfortable with asking them to contribute.

What goes into setting a fundraising goal?

Dom: It really depends on your budget and what staff you plan to hire/what activities you undertake. When you’re soliciting, it’s always good to go to donors with a total number you are trying to reach in that stretch and an idea of what their contribution will go toward, so really understanding what your budget is and how you plan to spend the money is integral on multiple fronts. In an email or social media campaign, it might be a good idea to set a smaller goal and ask your supporters to help you reach it in a specific timeframe.

Let’s say you’re reaching out to a supporter to ask them to donate. How do you decide how much money to ask them for?  

Dom: Before you sit down for call time, you have to make sure you have done all the research on the potential donor. That includes understanding their background, what they currently do, and most importantly, their giving history. Knowing what they’ve given to other candidates, PACs, etc. will be necessary in being able to decide on an ask.

Do you have any other advice for our readers, especially first-time fundraisers?

Dom: I like to think that fundraising is akin to community-building in that you are developing a group of supporters that believe in a similar vision and have aligned values, so just as if you were creating and growing a group on Facebook and feeding them content constantly, donors need to be kept equally engaged. They are going to want to be fed lots of information and understand how their investment is actually making an impact. Remember, the people who give you money are the ones who believe in you the most. You have to keep them engaged beyond continuing to ask them to contribute to your campaign. That engagement can translate into volunteering, more giving, and ultimately, for candidates, their enthusiastic vote at the ballot box. Your donors are not just ATMs – they are people who believe in you, and you need to keep them engaged.

A young white man wearing a blue button-up shirt smiles at the camera


Dom Kelly is the Development Manager at Fair Fight Action, a voting rights organization founded by Stacey Abrams, as well as a lifelong disability justice activist. As a person with Cerebral Palsy, he is passionate about furthering disabled representation in politics and government. A native New Yorker, he currently lives in Atlanta, Georgia with his wife Catie.

Introducing the Elevate Blog

Elevate Logo - Campaign Training for People with Disabilities. Graphic features the US Capitol Rotunda.

In 2017, you couldn’t find any information online on running for office with a disability. There were no campaign training programs for people with disabilities. There weren’t many news stories on candidates with disabilities. It seemed like learning how to run for office with a disability was a well-kept secret.

At the same time, more Americans became interested in running for office. More than twice as many women ran for Congress in 2018 than in 2016. Programs that teach people how to run for office became more popular. New campaign training programs were created. There were campaign trainings for members of different political parties. There were campaign training programs for different identities, like people of color and first-generation Americans. These great resources grew and trained more and more Americans to run for office. Still, there was a major information gap for people with disabilities.

At NCIL, we decided that it was time to fix this problem. Diverse leadership is important because the government’s decisions impact many parts of our lives. Elected officials decide how to run our towns and cities. They make decisions about public transit and schools. They decide how to use our tax dollars and create the laws that govern our society. People with disabilities should be involved in making those decisions.

For two years, I interviewed candidates with disabilities. I learned about how they ran their campaigns and the challenges they faced. What I learned made it even clearer that we need a campaign training program for people with disabilities. In 2019, I teamed up with Neal Carter of Nu View Consulting to solve this problem. We created Elevate, the first and only campaign training for people with disabilities. Hundreds of people tuned into the five Elevate webinars or watched the recordings on our website.

I’m thrilled to say that we will be continuing Elevate in 2021.  We’re working hard to improve the program based on the feedback we received in 2019. We are so excited to continue training people with disabilities to run for office.

Creating this program is challenging because there is no one “disability experience.” A candidate who is a wheelchair user will have a different experience from a Deaf candidate. A candidate who is blind has needs that are different from the needs of a candidate who has chronic pain. The campaign process for one person may look different from the campaign process for another person. So how can we learn about these different experiences?

We can learn by talking to people with disabilities, of course! In this blog, we will interview candidates, volunteers, and staff with disabilities about their experiences. We will also answer common questions about running for office. We will talk about what you need to think about if you want to run for office or join a campaign.

It’s clear that the disability community has a passion for civic engagement. With the right tools and knowledge, we can take that passion and commitment beyond the ballot box. We can represent our community in elected office or on a campaign. We can effect change.

We’re excited about starting this blog, and we want your input! What would you like us to talk about? Send your questions to:

Sarah Blahovec
[email protected]
202-207-0334 extension 1103

Information Alert: Affordable Care Act Heads Back to Supreme Court Today

Today the Supreme Court will hear oral arguments in the lawsuit seeking to invalidate the Affordable Care Act (ACA). This case, California vs. Texas, argues that the ACA’s individual mandate is unconstitutional and puts the entire ACA in jeopardy of being struck down. 

NCIL is closely following this. The ACA has been vital to millions of people across the country, including the disability community. Because of that, NCIL has consistently fought efforts to weaken and get rid of the ACA. NCIL, along with nearly 20 other national disability rights organizations, filed an amicus brief opposing these efforts to invalidate the ACA. In it, we argued how the ACA has expanded healthcare access and coverage for people with disabilities and society as a whole, including how the ACA’s changes to Medicaid have increased and improved access to healthcare and long term services and supports (LTSS). View the amicus brief (PDF).

Striking down the ACA would be devastating, especially for people with disabilities. And the thought of taking healthcare away from millions of people is even more unconscionable as we deal with the devastation resulting from the COVID-19 pandemic. That said, we do not expect to have a ruling for several months, and we plan to continue fighting. We will continue updating you with information as it becomes available, as well as ways that you can take action. 

In the meantime, you can follow some of the today’s action and join in on social media with the hashtags #ProtectOurCare and #SaveTheACA. Additionally we have extended our deadline to share your stories about how the ACA has helped you or how overturning the ACA would be harmful. Please share your stories with by using this online form or emailing [email protected]. We are extending the deadline for this request to Sunday, November 15, 2020.

See our previous alert for information about some of the ways the ACA has helped people.

2020 Annual Conference on Independent Living Wrap-Up

Conference Logo: Evolution of our Revolution - 2020 Annual Conference on Independent Living. Graphic features a speech bubble and heart icon.

NCIL’s 2020 Annual Conference on Independent Living Wrap-Up is now available online.

NCIL’s 2020 Annual Conference on Independent Living was truly unprecedented – an accessible virtual conference on disability rights and independent living. Despite having just weeks to overhaul our entire conference and transform it into a virtual experience, we were able to put together a 3 week conference packed with a plethora of content affecting CILs, SILCs, and people with disabilities: advocacy and public policy, the COVID-19 pandemic, racism and racial justice, voting rights and access, and so much more. Yes, three weeks was a very long time, but all conference content was recorded and offered online so that people did not have to attend live. Part of the reason for the long conference is that we had already accepted all of our workshops for the original, in-person conference, but we needed to add content on COVID-19 and racial justice and police violence to address everything that was happening in 2020. 

While we all missed our iconic NCIL March through the streets of Washington, we were thrilled to see everyone’s photos for the virtual March, and our virtual Rally was a really exciting and moving event. Holding a virtual conference came with some silver linings, too. We had our largest conference in NCIL history, with well over 1,000 participants. Without the need to travel, more people than ever were able to afford and access the conference. Thank you, from the bottom of our hearts, to all of our 2020 Annual Conference attendees, sponsors, and exhibitors, who stuck with us during this unexpected upheaval. You are the ones who make the NCIL conference special, no matter if it’s virtual or in person. We could not have gotten through this year without the support of our members, conference attendees, and donors. 

While there’s no question that this has been a very difficult year – devastating at times – the NCIL conference was transformed by the realities of COVID-19 pandemic. Some of that has resulted in positive changes that will stay with us in the future. We are so glad to be a part of this evolution and we are excited for what the future holds.