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

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

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!

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IL-NET T&TA Center Presents… A National Webinar: CIL Pandemic Response – CARES Act Funds and Other Opportunities for Innovative CIL Actions

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

Register online

Centers for Independent Living are uniquely equipped to respond to the COVID-19 pandemic. We are all over the country with grassroots deep in our communities, keenly aware of the needs of people with all types of disabilities. On top of that, CARES Act funds provided an excellent opportunity to provide additional services and supports for people with disabilities affected by the pandemic. There is much to be done, even if you did not receive CARES Act funds or have already spent them. We are at a critical time in the pandemic response, but the available information on resources and vaccines can be complicated to navigate.

Join us on March 3 to learn exactly what CILs can be doing in this moment to support people with disabilities. We’ll focus on allowable uses of CARES Act funds, vaccine information and assistance, and other resources to bolster your own understanding and to support your consumers.

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

Target Audience: Staff and board members of Centers for Independent Living. Some of the systems level responses may also be of interest to staff and members of Statewide Independent Living Councils.

What You Will Learn:

  • How CILs can use CARES Act funds, and other funding opportunities for CILs that have spent or did not receive CARES Act funds.
  • How CILs can help with vaccinations and overcoming inequities in vaccine rollouts.

Meet Your Panelists

Todd Holloway has worked for the Center For Independence (CFI) in Lakewood, WA for fifteen years. In that time he has expanded CFI’s community relationships by working directly with peer organizations and ALL of the government and non-government organizations that intersect with Independent Living and our movement. 

He is currently the chair of the NCIL Emergency Preparedness Subcommittee as well as the chair of the Tacoma Area Commission on Disability (TACoD) and the co-chair of the Pierce County Accessible Communities Advisory Council (PC-ACAC). Systemic change has become a huge focus for him and he joins many of our IL family in sharing lessons learned and best practices in an attempt to achieve true equality in all of our communities!

Ami Hyten is a licensed attorney and Executive Director of the Topeka Independent Living Resource Center (TILRC), a disability advocacy and human rights organization in Kansas. TILRC has been providing support and advocacy for self-directed personal attendant services since the program’s inception in the state of Kansas. Prior to rejoining the disability rights movement at TILRC nine years ago, Ami was a trial lawyer representing plaintiffs in civil and administrative matters, and spent several years as legislative counsel for the Kansas Supreme Court’s Office of Judicial Administration.

Jill Jacobs serves as Executive Director of the ENDependence Center of Northern Virginia (ECNV). She is an accomplished advocate and activist with an expertise in human and disability rights.

In her previous position at Booz Allen Hamilton, she advised on projects for the Department of Health and Human Services, Veteran’s Affairs, Centers for Disease Control, and Centers for Medicare and Medicaid Services, with a primary emphasis on Home and Community-based (HCBS) Long-term care. Prior to that, Jill founded and served for eighteen years as the CEO of Ability Unleashed, a Medicaid HCBS case management agency. She has held executive positions at various nonprofit and government entities and served on boards to include the World Association of People with Disabilities and UCP of Washington & Northern Virginia. She is currently on the boards of the National Council on Independent Living and the Moses West Foundation.

Paula McElwee is the Associate Director of Technical Assistance for the IL-NET National Training and Technical Assistance Center for Independent Living at Independent Living Research Utilization (ILRU). In addition to providing individualized technical assistance, Paula moderates training calls monthly for new CIL Executive Directors, Assistant Directors/Program Managers, Financial Managers of CILs, Designated State Entities (DSEs), and for SILC staff and board members. Her blog, ilnet-ta.org/wp, is a repository of technical assistance questions and answers from CILs and SILCs. Paula was the first Director of Link, Inc. in Kansas (one of the first states funded through the Rehabilitation Act) beginning in 1979. She worked in the disability field in Kansas for 25 years, and was appointed by two governors to serve three terms on the Statewide Independent Living Council of Kansas before moving to California in 2000. She previously served on the board of Resources for Independence of the Central Valley and served as interim executive director for four CILs in California, assisting the boards to transition to their next executive director. Paula has provided training, facilitation, and consultation with state associations, SILCs, and numerous centers throughout the country.

Presented by the IL-NET: The IL-NET National Training and Technical Assistance (T&TA) Center for Independent Living is operated by ILRU (Independent Living Research Utilization). The IL-NET T&TA Center provides training and technical assistance to centers for independent living and statewide independent living councils. The IL-NET is supported by grant numbers 90ILTA0002 and 90ISTA0002 from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.

IL NET Logo

Election Assistance Commission Voting Guidelines Fail Disability Community

The National Council on Independent Living (NCIL) is disappointed by the U.S. Election Assistance Commission’s (EAC) recent adoption of the Voluntary Voting System Guideline (VVSG) 2.0 Requirements. The adopted VVSG 2.0 requirements ignored the recommendations made by the disability community to:

  • ensure accessible remote voting,
  • prohibit segregated in-person voting,
  • and require a reasonable voting system upgrade schedule so that voters with disabilities are not expected to use old, inaccessible ballot marking devices for decades to come.

As a result, VVSG 2.0 does not ensure a private and independent ballot for all voters in a non-discriminatory manner. 

The extensive security requirements in VVSG 2.0 require the use of a voter-verified paper printed ballot. The requirements also limit remote voting to blank ballot delivery. These requirements create major barriers to ensuring accessibility for all in-person and remote voting options. 

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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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