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

Action Alert: Join Tomorrow’s HCBS Call-In Day!

Congress has approved a budget resolution to clear the way to move a COVID-19 relief package forward, and last week House Committees started introducing their bill text and holding mark-ups. The House Energy and Commerce Committee included a 7.35% FMAP (Federal Medical Assistance Percentage) bump for home and community based services (HCBS) for one year. See more information, including the language.

We know this targeted funding for HCBS is critical for keeping disabled people out of congregate settings where COVID-19 is spreading rapidly. We need to make sure this funding remains in the final package!

Take Action

It is urgent that Congress hears from us! Tomorrow, Wednesday, February 17, NCIL and other disability and aging organizations are holding an HCBS Call-In Day. Contact your Representative and tell them how important it is to include dedicated HCBS funding in the COVID-19 relief package!

  • Call your Representative: Call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY). Ask to be connected to your Representative.
  • You can find your Representative’s contact form at house.gov/representatives
  • You can find your Representative’s phone number, Twitter handle, Facebook page, and other contact information on Contacting Congress.
  • You can use Resistbot to turn texts into faxes, mail, or hand-delivered letters by texting “RESIST” to 50409.

A sample script and sample tweets are below – please feel free to personalize.

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FCC Seeks Outreach Partners for Emergency Broadband Benefit

As a result of the COVID-19 relief package passed in December, the Federal Communications Commission (FCC) is developing a program to provide relief to households struggling to pay for internet service during the COVID-19 pandemic. The program is called the Emergency Broadband Benefit, and will provide a monthly discount toward broadband service for eligible households and one-time discounts for the purchase of certain devices from participating providers.

The FCC has a new website with information about the program at fcc.gov/broadbandbenefit. As the program is developed, the website will continue to be updated with the latest resources and information on the Emergency Broadband Benefit. As part of the effort to inform people about this new benefit, the FCC is looking for stakeholders to sign up to promote the program. If you and your organization are interested, you can sign up to become an Outreach Partner on the website.

Last week, Acting Chairwoman Rosenworcel convened a virtual roundtable discussion to gather input on how to structure the new Emergency Broadband program. View information about that roundtable.

If you would like more information about the Emergency Broadband Program, you can contact the FCC at broadbandbenefit@fcc.gov or visit fcc.gov/broadbandbenefit. For those who use American Sign Language, you may call the FCC Consumer ASL Line at 844-432-2275. 

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. 

Action Alert: Ask Your Representatives to Oppose H.R. 1’s Paper Ballot Mandate

In January, Congressional Democrats introduced H.R. 1, the For the People Act. This broad legislation addresses many areas of democracy reform, including voting rights, election security, and voting accessibility. While there are many positive provisions in the legislation, the National Council on Independent Living and other disability rights organizations are concerned about a requirement for voter-verified paper ballots. Paper ballots are not accessible to many voters with disabilities and can limit the right to a private and independent ballot.

Last week, NCIL joined 19 other national disability rights organizations in signing onto a statement by the National Disability Rights Network expressing concerns over a paper ballot mandate. This statement laid out the disability community’s concerns that the paper ballot mandate would:

  • End all voting system innovation and advancement to produce a fully accessible voting system that provides enhanced security without relying on inaccessible paper
  • Limit voters with disabilities’ federal right to privately and independently verify and cast their ballots
  • Segregate voters with disabilities

Read the full statement: “Disability Community Fears Paper Ballot Mandate Will Hurt Voters with Disabilities

H.R. 1 Section 1502 requires that voting machines use “an individual, durable, voter-verified paper ballot.” It also requires that voters are given the option to mark their ballot by hand, which further limits the availability of ballot marking devices for people with disabilities. This will further segregate voters with disabilities who must use ballot-marking devices. Furthermore, it will increase the likelihood that poll workers will not be properly trained on how to use ballot-marking devices. Poll workers will also be expected to decide who is “disabled enough” to use a ballot-marking device, although they do not have the legal right or qualifications to make that decision.

Take Action: Contact your Representative to tell them to oppose the paper ballot mandate in H.R. 1, as it will limit disabled voters’ right to a private and independent ballot.

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I&R Center: RFP for AIRS E-Conference in May

Dear Aging and Disability I&R Professionals,

The Alliance of Information and Referral Systems (AIRS) is seeking workshop proposals for the AIRS virtual spring conference. The Request for Proposals for the upcoming AIRS E-Conference — “Envision I&R” (May 12th, 13th and 14th) — closes February 12, 2021. Be sure to submit your workshop ideas for consideration.

The primary audience for the spring conference is directors, managers, supervisors, and everyone and anyone involved in understanding and assembling the “big picture” in all types of I&Rs (Aging/Disabilities, 211, Health, Comprehensive, Blended Crisis/I&R, etc.). This will be a virtual conference via Zoom. AIRS will be holding a second e-conference in September that will be more geared to front-line service.

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CDC Resources for COVID-19 Vaccination and Underlying Medical Conditions

The Center for Disease Control and Prevention’s High Risk Medical Conditions sub-team – part of the Disproportionately Affected Adult Populations (DAAP) Team of the Vaccine Task Force – has the goal of helping to address COVID-19 vaccine implementation in groups with underlying medical conditions at higher risk for severe illness from COVID-19, which includes many disabled people. They have shared the following COVID-19 resources:

  • COVID-19 Vaccination Toolkits – This webpage contains toolkits for audience-specific toolkits for healthcare teams and community administrators, including community-based organizations. The toolkits contain introduction letters, frequently asked questions, slide decks, fact sheets, and more.  These tools can be adapted to your organization’s scope of work and audience.
  • COVID-19 Toolkit for Older Adults & People at Higher Risk – This webpage contains COVID-19 vaccine and disease guidance and tools to help older adults and people at higher risk and those who serve or care for them.​  This toolkit contains FAQs, checklists, factsheets, posters, social media, PSAs, and more.
  • COVID-19 Vaccine – Recently updated COVID-19 vaccine landing page for consumers and clinicians with materials available in English, Spanish, Chinese, Vietnamese, and Korean.

As a reminder, you can also find updates, information, resources and past alerts about COVID-19 at ncil.org/COVID-19.

$2.25 Million Compensation Fund Available in Settlement with Amtrak

Today, Amtrak began accepting claims for monetary compensation for people with mobility disabilities who traveled or wanted to travel to or from one of 78 stations and encountered accessibility issues. The Department of Justice (DOJ) put out a press release today with further details including the full list of the 78 stations included in the settlement.

On December 2, 2020, DOJ and Amtrak entered into an agreement. To resolve the department’s findings of disability discrimination, Amtrak will fix inaccessible stations – prioritizing stations with the most significant barriers to access – and pay $2.25 million to victims hurt by inaccessibility at the 78 stations. Amtrak will also: design more accessible stations; train staff on ADA requirements; and implement a process for accepting and handling ADA complaints.

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Shield and Intersectional Rights Protection

An Update from the NCIL Mental Health Subcommittee

Successful comics can be particularly good at recognizing what hovers below the illusions that most of us accept as unchallenged reality. The late George Carlin exposes one of the myths that many of us accept. He riffs that it is comforting to believe that we have rights, but what we really have is privileges and privileges can be taken away. It is this challenge that too often confronts select groups of people who find themselves alone and easy targets for discrimination and misguided treatments.

The Shield program of MindFreedom International (MFI) was developed to support the right / privilege of informed choice as a bedrock of social justice for people who have been labelled. Shield is designed to counter the power inequities that confront those who oppose decisions and treatments where their complaints and input are ignored.

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Job Announcement: National Council on Independent Living Executive Director

The deadline to apply for this position has been extended to March 15, 2021.

The National Council on Independent Living (NCIL) is currently seeking an Executive Director to succeed Kelly Buckland upon his retirement in May of 2021. NCIL encourages all qualified applicants to apply for this exciting opportunity to lead one of the nation’s premiere organizations for disability rights and independent living.

NCIL is the longest-running, national, cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands of organizations and individuals including: individuals with disabilities, Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.

The Executive Director will lead a complex grassroots organization that is led by its membership and Governing Board. The ability to work with a mission-driven board, members, and grassroots stakeholders is key. The Executive Director will also direct a dedicated, passionate staff of ten and administer an annual budget of nearly $2M. NCIL’s revenue comes from a variety of sources, including membership dues, donations, and grants and contracts. Ensuring NCIL’s continued success with advocacy and policy, resource development, and operating high-quality, accessible programs and events will be critical.

NCIL approaches disability rights through the Independent Living perspective, that disability is a natural aspect of human life and that the barriers people with disabilities face are rooted in ableism and discrimination. NCIL is also committed to becoming an anti-racist organization, intent on confronting and undoing the harm of racism and injustice entrenched in disability rights, IL, and society-at-large. The next Executive Director must be committed to these same priorities to continue NCIL’s path towards justice and equity. We also believe that a diverse staff enables us to better understand and serve our members, audience, and community.

NCIL has a tremendous amount of momentum and excitement thanks to its current leadership and years of successful advocacy. This is an outstanding opportunity for the right leader as NCIL approaches a new strategic plan and its 40th anniversary in 2022. We hope you will consider applying and share this announcement with qualified candidates that you know.

The full job announcement is available at ncil.org and details the responsibilities and required qualifications for the position, as well as instructions to apply. Applications must be received by the close of the business day, March 15, 2021.

NCIL Executive Director Kelly Buckland to Retire in 2021

Dear NCIL Members, Staff & Friends,

First I hope that you are all well in these very trying and turbulent times. This is one of the hardest statements I’ve ever had to write. I am writing to share the news of my intention to retire as Executive Director of the National Council on Independent Living (NCIL) on May 14, 2021. While I am looking forward to a new chapter in my life, I am going to miss my work as Executive Director very much! Especially, working with the hard working and dedicated NCIL employee family! Working as the Executive Director of NCIL has been one of the greatest honors of my life. I want to thank all of you humbly for allowing me this honor and for all of your support throughout the years!

This is a very important transition for NCIL and me. I have already shared my plans with NCIL’s Governing Board and staff and we have already begun implementing NCIL’s succession plan. I am confident that NCIL’s Governing Board and Executive Committee will ensure that the transition is smooth and that my replacement will be an exceptional leader and advocate for people with disabilities and independent living. We will be releasing the NCIL Executive Director position announcement and instructions on how to apply very soon. 

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