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

IL-NET T&TA Center Presents… A National Webinar – CIL Pandemic Response: How CILs Can Initiate Emergency Relocations and Transitions During the COVID-19 Pandemic

March 11, 2021; 3:00 – 4:30 p.m. Eastern

Register online

The COVID-19 pandemic has highlighted what IL advocates have known for years – that nursing homes and other congregate settings are not safe places for people with disabilities.  According to CMS data, over 128,000 nursing home residents have died of COVID-19.  We know this number is likely much higher since the CMS classification of nursing homes does not include other institutions and congregate settings, and there are reported instances of states suppressing data and nursing home underreporting. 

Thankfully CILs have been doing what they do best: getting people out of institutions and back to the community. Of course there are daunting challenges to this work during the pandemic, especially due to in-person visits being prohibited or restricted for residents in congregate settings.

It is possible, however, and we must do what we can to get people out of institutions. Join us on March 11 to learn how two CILs have accomplished emergency relocations and transitions during COVID-19.  We’ll share the activities, partnerships, advocacy, and funding that made it possible.  

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.   

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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 getoutofthemargins@gmail.com.

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 the Social Security Administration directly or talk to a benefits lawyer.

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.”

Add Your Organization as a Signatory to NCIL’s Chronic Pain Advocacy Letter to Congress

In 2019, the Centers for Disease Control and Prevention (CDC) issued warnings to policymakers that a range of policies aimed at addressing the opioid crisis through limiting prescriptions—especially policies based on misinterpretations of its 2016 prescribing guideline—are increasing barriers and causing harm to people living with pain. Many who have relied on opioids, often for decades, are seeing their medication forcibly reduced or eliminated; in increasing numbers, the same group of people is being denied medical care altogether. The Food and Drug Administration concurrently issued an alert about the dangers of abrupt opioid cessation.

Despite these safety alerts and our success in 2019 as a disability community in preventing federal policies that create inflexible limits from passing into law, several soon-to-be-introduced bills double down on stringent, one-size-fits-all limits.

Because many people with disabilities live with serious or chronic pain, our community is disproportionately affected by these policies. The harm caused by these policies, which may range from increased pain, to loss of function, to suicide or resorting to illegal substances, has now been documented in numerous studies.

Therefore, NCIL has drafted a letter, which will be sent to Congressional Leadership, leaders of key committees working on these issues, and sponsors of key bills. We are writing to ask Congress not to contravene the warnings of our public health agencies and to await the outcome of ongoing efforts by the CDC and the FDA (in consultation with the National Academy of Medicine) in updating prescribing guidelines for acute and chronic pain. 

As organizations that advocate for the rights of people with disabilities, we hope you will add your organization’s name as a signatory to this letter. Nearly 100 organizations signed a similar letter in 2019, which greatly enhanced our advocacy efforts. You can add your organization at the link above or by emailing lindsay@ncil.org. The deadline to sign on is Tuesday, March 9, 2021.

Additional Information

The most problematic policies are based on misapplication of the CDC’s Guideline for Prescribing Opioids for Chronic Pain. These include:

  • Strict limits on opioid prescribing for acute pain, often of 3-7 days
  • Applying dosage guidance designed for opioid naïve individuals to people currently taking opioids and the physicians who care for them
  • Mandatory or abrupt tapering off opioids and patient abandonment
  • Overreach to unintended populations

Additional information on each of these can be found in the letter.

The CDC and FDA recently issued several clarifications as a result of the harms being caused to people with chronic pain:

While we have significantly decreased access to opioids, there has not been a responsive increase in access to or coverage of non-opioid treatments.  One of the bills addressed in the letter – the NOPAIN Act – which we support, attempts to expand such treatment. Nevertheless, it is insufficient, as people with pain need access to the full spectrum of available modalities of pain treatment.

As organizations advocating for the rights of people with disabilities, we hope you will join these efforts to call on Congress to focus on the needs of people with chronic pain.

Further Resources

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.

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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.