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

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2021 NCIL Advocacy Priorities Guide Now Available!

NCIL’s 2021 Advocacy Priorities Guide is now available.

This document contains specific information on the national legislative and policy priorities identified biannually by the NCIL membership, including funding for the Independent Living Program, healthcare and long-term care, housing, transportation, education, and more.

Please share this document with your Center or SILC staff, board, and the Senators and Representatives who serve your districts.

Contact NCIL for further information on the issues discussed in this document.

Registration Now Open for NCIL’s 2021 Virtual Annual Conference!

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

July 19-30, 2021

The theme of NCIL’s 2021 Annual Conference is Liberty, Independence, Freedom, and Equity (LIFE).

Liberty, Independence, Freedom, and Equity represent the pillars of the work we must do. We will fight for the liberty of people with disabilities incarcerated in institutions, including nursing homes, psychiatric institutions, intermediate care facilities, jails and prisons, and other congregate settings. We will fight for the independence and freedom of people with disabilities to lead our own lives. We will fight for equity in all that we do to achieve a more just, anti-racist, and equitable society and Independent Living Movement. This is our agenda. Join Us!

All registrations received and paid by June 29, 2021 are eligible for the Early Bird registration rates.

Early Bird Registration Rates

  • NCIL Member: $150 / person
  • Non-Member: $240 / person
  • Youth (26 and younger): $90

Regular Registration Rates

  • NCIL Member: $210 / person
  • Non-Member: $300 / person
  • Youth (26 and younger): $90

Contact [email protected] with questions about registration.

Registration Policies

BIPOC Complimentary Registrations

NCIL is excited to offer complimentary registrations to all BIPOC (Black, Indigenous, and People of Color) who want to attend NCIL’s 2021 Virtual Conference on Independent Living. NCIL is offering these complimentary registrations to all BIPOC to offer reparations for past harm and exclusion, in commitment to our transition to becoming a truly equitable and just organization. BIPOC folks will receive a discount code in the registration form to waive their registration fee.

Beginning in 2022, NCIL will offer BIPOC conference grants that will be application-based. We will release more information on the grants, including how to donate or apply in early 2022.  

Youth Registration Rate

NCIL offers a reduced youth registration fee of $90 to all NCIL members that are 26 years old or younger. We hope this special rate will allow young people to afford the Conference and organizations to sponsor young people to attend.

Replacement and Cancellations

Replacement and cancellation requests must be made in writing and sent to [email protected] by July 13, 2021. No refunds will be issued after that date.

Registrant Replacement: If it becomes necessary for you to send someone in your place, please contact us as soon as possible.

Cancellation: Cancellation requests received by July 13, 2021 are refundable less a $50 processing fee.

Survey: Accessible COVID-19 Vaccine Distribution to People with Disabilities

Now that vaccine distribution is rapidly picking up pace, the Partnership for Inclusive Disaster Strategies wants to find where people with disabilities continue to face barriers in accessing the COVID-19 vaccine.

Please take 10 minutes to complete the Accessible COVID-19 Vaccine Distribution to People with Disabilities survey to help us strategize for equitable access to the COVID-19 vaccine for and autonomy of people with disabilities.

If you need this survey in an alternative format, please contact Priya Penner at [email protected].

Partnership for Inclusive Disaster Strategies Logo

2021 NCIL Advocacy Awards

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

Each year, NCIL recognizes individuals and / or organizations for outstanding advocacy efforts.

Eligibility: Nominees do not have to be a member of NCIL. In the event that the winner is not a member of NCIL, upon receiving the award, he or she will receive a free one-year individual NCIL membership.

You must be a NCIL member to nominate someone for an award. The deadline to nominate for a NCIL Advocacy Award is May 28, 2021.

Awards will be announced during NCIL’s 2021 Annual Conference on Independent Living.

Diana Viets Memorial Award

This year, NCIL will again be honoring individuals from the Independent Living field with various awards for their dedication to the Independent Living and disability rights movements. One of these awards is the Diana Viets Memorial Award.

Diana was an energetic young woman with a disability who dedicated her life to empowering young people with disabilities to take an active role in the Independent Living movement. Through her work at a Center for Independent Living and the NCIL Board, Diana touched the lives of many youth with disabilities. NCIL wants to acknowledge, honor, and encourage our young leaders who are promoting disability pride, spreading Independent Living philosophy, and fostering the active participation of youth with disabilities in the disability rights movement.

Eligibility: Individuals eligible for this award should be young adults whose work through Independent Living has had a positive impact on youth with disabilities.

Regional Advocacy Awards

NCIL encourages you to nominate someone in your region who you believe is deserving of an award for their advocacy efforts.

Purpose: To recognize individuals or groups / organizations within each region for outstanding systems advocacy efforts consistent with independent living goals and philosophy at a national, state, or local level.

Process: The Regional Representative will solicit written nominations from membership within their region. Regional Representatives are strongly encouraged to solicit input from the members in their region in selecting the award winner. To the greatest degree possible, the selection process should be free of actual or perceived conflicts of interest. One award winner will be selected from each region.

2021 Call for Resolutions

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

NCIL Resolutions

The purpose of resolutions is for members to speak directly to what NCIL does and what NCIL stands for. A resolution, if adopted by the membership, is a formal opinion from NCIL or a commitment to taking action on a specific topic.

Resolutions must be received by May 28, 2021.

[Read more…]

Make Nominations for the NCIL Board of Directors by May 10, 2021!

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

Dear NCIL Members:

NCIL is planning to hold virtual elections for our Governing Board positions this year. NCIL members have an opportunity to nominate an individual to run for each of the following positions on the NCIL Board:

If you or someone you know would be interested in running for the NCIL Board, please fill out the nomination form.

Please carefully review the position descriptions and memorandum, as it will help in considering potential nominees. Also, make sure to share these resources with the individual you are nominating so that they have a clear understanding of what will be expected should they be elected.

[Read more…]

Free Resource for Youth & Emerging Leaders with Disabilities Interested in Nonprofit Leadership

Out of the Margins Logo

Out of the Margins is a free, accessible resource available to any emerging leaders, teaching the fundamentals of nonprofit leadership. Out of the Margins provides tutorials on core subject matters that are fundamental to leading not-for-profit organizations including financial oversight, conflict resolution, advocacy v. lobbying, grants and grant writing, annual reporting, overseeing operations, understanding boards and committees, and more. Emerging leaders can review the materials at their own pace and choose the subjects that are most important to them.

Each subject is taught by a different subject matter expert. All experts are disabled people with diverse backgrounds from across the nation. Out of the Margins is ever evolving and growing to meet the needs of emerging leaders. 

Out of the Margins is a project of the Topeka Independent Living Resource Center, Inc. To learn more about Out of the Margins, please visit outofthemargins.org.

Interested in scheduling a training for your organization on how to use Out of the Margins to help your youth & emerging leaders? Contact us at [email protected].

Elevate Blog: Can You Run for Office if You’re On Social Security?

One of the most common questions we receive about running for office is: “I receive Social Security benefits. Can I run for office?” The Social Security Administration (SSA) does not have any official guidance on their website about how campaigning or holding office can impact eligibility.

NCIL reached out to SSA last fall to ask them about whether running for office can affect someone’s Supplemental Security Income (SSI) payments or Social Security Disability (DIB) benefits. SSA evaluates someone’s eligibility on a case-by-case basis. However, SSA does say that campaigning or holding elected office may impact your eligibility for SSI or DIB. We have included the full answer below. Their answer goes into more detail about how campaigning or holding office can impact eligibility for benefits. If you have any further questions, we recommend that you reach out to a local certified benefits planner. Your local center for independent living can refer you to a local certified benefits planner. Find my local center for independent living.

Answer from the Social Security Administration:

“We are unable to provide you with a definitive answer because disability determinations are necessarily fact-specific and must be performed on a case-by-case basis.  However, we can offer you general information about how such activities may affect eligibility or entitlement to benefits.

First, it is important to note that our rules require beneficiaries to inform the Agency of events that may affect their disability status.  Such events include a return to work, an increase in hours worked, or an increase in earnings received.  Holding an elected office, even if part-time or unpaid, is work that the beneficiary should report.  Furthermore, our rules also require a beneficiary to report medical improvement that allows them to return to work.  Thus, if the beneficiary’s ability to campaign correlates with medical improvement, he or she should report that medical improvement to us.  This information will generally require the agency to initiate a review to evaluate whether the beneficiary continues to be disabled under the Social Security Act.

Under the Act, an individual who engages in substantial gainful activity is not disabled. Accordingly, if a beneficiary’s income from an elected position qualifies as substantial gainful activity, then that beneficiary is likely no longer disabled under the Act, regardless of the nature of the work.  In addition, earnings from political activity are not typically excepted from SSI income and resource evaluations.  Thus, earnings from such political work that fall short of substantial gainful activity may still reduce or eliminate eligibility for SSI.

Regardless of earnings, a beneficiary’s demonstrated ability to work, or perform activities similar to work, may show that the beneficiary no longer meets our standard for disability.  Whether campaign activities or the duties performed in elective office demonstrate that the beneficiary is no longer disabled is a fact-specific inquiry, and we are not able to provide you a definitive answer in the abstract.  We would have to consider whether the beneficiary’s specific campaign or office activities, among other factors, demonstrate that he or she has the functional ability to work.  If he or she does, it is likely the Agency will find that the beneficiary is no longer disabled.  Thus, even part-time or unpaid work may result in a termination of disability benefits.

For the reasons discussed above, campaigning for or holding elective office, regardless of whether such position is full-time or paid, may affect a beneficiary’s entitlement or eligibility for both SSI and DIB.  As noted above, we would evaluate the impact of those activities and any earnings on a case-by-case basis to determine the impact on any particular beneficiary.”

Call for Workshop Proposals: 2021 Annual Conference on Independent Living

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

2021 Annual Conference on Independent Living

July 19-30, 2021

Submit a workshop proposal

The application deadline has been extended to Thursday, March 25.

NCIL is excited to announce our virtual 2021 Annual Conference on Independent Living! The theme of NCIL’s 2021 Annual Conference is Liberty, Independence, Freedom, and Equity. The past year has been a stark reminder of the need for survival, but we all have the right to Liberty, Independence, Freedom, and Equity. We fight to survive, but there is so much more to LIFE!

2021 is a year of rebuilding and recommitment. The events of the past year have been glaring, unnecessary reminders of the rampant ableism, racism, and oppression engrained in our society. We have the solutions, we have the power, and we can overcome them. Independent Living is built on advocacy and peer support. We must come together to share our knowledge and actualize our power. This is the promise and power of the Annual Conference on Independent Living!

[Read more…]

Elevate Blog: Interview with Representative Jessica Benham

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

Representative Jessica Benham is a freshman legislator in the Pennsylvania House of Representatives, representing the 36th District. She is queer, autistic and has Ehlers Danlos Syndrome, a rare genetic connective tissue disorder. Representative Benham is both the first openly LGBTQ woman and openly autistic legislator in the Pennsylvania State House.

Before Representative Benham ran for office, she was one of the cofounders of the Pittsburgh Center for Autistic Advocacy, a nonprofit run by and for autistic people. Her work focused on ensuring that public policy reflected the participation of autistic people. The shift from fighting for autistic people to be heard to being a decision maker was a big change for Representative Benham: “being in a place where people have to listen to me is a change, but the ability to lift up the concerns of disabled people and provide people a platform from which to speak is a real honor.”

I sat down with Representative Benham to ask her some questions about why she decided to run for office, what her campaign was like, and advice she would give to other disabled folks who are considering running for office. Her answers have been edited for length and clarity.

Why did you decide to run for office?

Honestly, running for office was not something I ever thought I would do. The first time someone suggested that I should run, I laughed at them. As more and more folks from my community asked me to step up and serve, they helped me imagine a world in which people could accept me for who I was. While of course I would face discrimination, stigma, and people’s bigotry and biases, the vast majority of people would see someone who would fight for them.

Why do you think it’s important for disabled people to run for elected office, especially those who are LGBTQ?

I think it’s important for our elected bodies to represent and reflect the population at large, so that means that those bodies like the Pennsylvania General Assembly should be diverse. That means that they should include disabled folks, queer folks, and Black and brown folks. It’s important because we legislate from our lived experience. Like a lot of folks from my community, I’m a working class kid. That background has helped a lot of folks in my community understand that I know what they’re going through. I’ve experienced hardship, and certainly, I also experienced ableism and homophobia, sexism, all those things. All those experiences give me a thick skin and also give me a determination to fight for folks who have been left out of the political process.

What was your campaign like? Were there any campaign practices that you had to adapt or do differently?

I think that it’s hard to tell, because campaigning this year was so much different from typical campaigning anyways [due to the pandemic]. So I think a lot of disabled folks with mobility disabilities have found that door knocking doesn’t necessarily work for them, but we weren’t door knocking anyways post-February. While I love knocking doors and that’s enjoyable for me, in many ways, all of my campaign activities became accessible to folks with mobility disabilities simply because we were doing everything from home. So I think it’s hard to tell.

I think that the perspective with which I approached campaigning is different. I don’t think that people should compromise their mental and physical health on campaign: candidates, staff, or volunteers. In the broader culture of campaigning, there’s the sense of you don’t care about your job unless you sacrifice all those things for it. I tried to make it clear to my staff that I wanted people to have work-life balance.

How would you like to see campaigns adopt some of these changes in the future?

In many ways, campaigning is a science of what typically works. It is unfortunately true that due to the time-compressed nature of campaigns that it would be difficult for all campaign activities [to change]. The playing field wouldn’t be level if one campaign chose to not door knock, for example, because we know face-to-face conversations are just so effective. And yet on the other hand, there is this troubling thing that campaigns do where they devalue certain kinds of voter contact. While broadly speaking, door knocking reaches the most amount of voters, it is not the most effective way to reach every voter, and that’s important. For some voters, calling or texting is most effective. In the future, campaigns should use every tool at their disposal for voter contact. I had some of the best times at virtual fundraisers, because we did fun things like Labor History Bingo. We wouldn’t have done that at an in-person event. It’s hanging onto some of those creative and clever things, recognizing that there is still a lot of power in virtual campaign activities, and not losing sight of that.

Do you have any advice for people with disabilities who are considering running for office? 

On the accessibility of campaigning, I think it’s helpful to find somebody who has the same kinds of access needs as you who ran for office to find out what worked for them. The other thing is to find folks locally who are able to take you under their wing. You cannot run for office just by yourself, so to have folks who hold elected office or who are union leaders, or who hold other positions of leadership in their community taking you under their wing is useful.

One of the things that is useful for being seen as a legitimate candidate is “being seen,” and being seen can be expensive. Finding folks who can facilitate that networking is critical, because it can be difficult to find the financial resources to attend events where you can meet other campaign donors. I think identifying groups of people who will volunteer for you is really important, and that means being an organizer in other areas, [such as] helping out on another grassroots campaign and meeting folks who were really good volunteers for that campaign. I was somebody who organized neighborhood projects. Folks who were willing to pull weeds with me at the neighborhood park would collect signatures [to get on the ballot]. Money is unfortunately important in politics right now, but it’s not everything. I would say it’s more important to have a broad base of volunteers than it is to have a lot of money.

Representative Jessica Benham, a young woman with brown hair wearing a blue face mask and blue coat, stands at a desk and raises her right hand as she takes the oath of office.

Jessica Benham is the State Representative in PA House District 36. Prior to her election, she was co-founder of the Pittsburgh Center for Autistic Advocacy (PCAA), where she had worked to ensure that individuals with disabilities are treated fairly in the legislative process. Previously, while a graduate student at the University of Pittsburgh, she was involved in the effort to organize a union of graduate student workers.  Jessica is the first openly Autistic state legislator in PA and the first out LGBTQ+ woman in the state house. As a state representative, she has focused on fighting for fixes to our unemployment system, better access to COVID testing and vaccines, access to healthcare, a clean and healthy environment, fair funding for education, and LGBTQ and disability rights.