Death by Institutional Bias

  • Presented by: Cliff Perez, Darrel Christenson, Todd Holloway, Yvonne Smith, Steve Higgins, and Ami Hyten
  • Track: Advocacy & Policy Work
  • July 20, 2020; 1:00 – 2:15 p.m. EDT

This hot topic will address the wildfire of COVID-19. The pandemic has laid bare the institutional bias in our communities. The pandemic has affirmed what disability advocates have said for years: institutions are deadly. Members of the emergency preparedness task force will define how the response from emergency planning agencies defaulted to an institutional bias, and provide suggestions for ways the bias can be removed. Members of the Civil Rights/ADA, LTSS/Healthcare, and Housing Subcommittees will discuss how necessary investments in these systems will help promote community choice and freedom and put an end to the deadly bias toward institutionalization.

Disability Laws and Activism

  • Presented by: Benjamin McMullan and Vincent Lopez
  • Track: Independent Living 101
  • July 20, 2020; 2:30 – 3:45 p.m. EDT

The Center for Independence and Skyline College Present: Disability Laws and Activism. Join the Center for Independence of Individuals with Disabilities and Skyline College for an interactive workshop on the history of major legislation such as Section 504 of the Rehabilitation Act and the Americans with Disabilities Act. In this presentation, we explore the activism that led to the enactment and implementation of these laws, in conjunction with the rise of the Independent Living Movement. We focus on this legislation, and the events that led up to them, to show how individuals with disabilities worked together to fight for their rights—and ultimately revolutionized disability rights in the United States, profoundly changing the lives of future generations.

ADA at 30, Still More To Do

  • Presented by: Steve Higgins and Kimberly Tissot
  • Track: Advocacy & Policy Work
  • July 20, 2020; 4:00 – 5:15 p.m. EDT

In this workshop, we will talk about accomplishments made under the Americans with Disabilities Act (ADA) while also focusing on its future. The ADA remains under attack! Our rights as persons with disabilities are affected by any changes to the law and it is important that we are aware of this. At the same time, it is important that we develop a strategy for the future that builds on a structure of laws, policies, and other tools that enable us as people with disabilities to have enforceable rights and protections that are inclusive of all persons with disabilities and support our right to remain independent in the community as we choose.

Fighting Disability Discrimination During the COVID-19 Pandemic and Beyond

  • Presented by: Diane Coleman, Anita Cameron, and Lydia Nunez Landry
  • Track: COVID-19, Pandemic, and Emergency Preparedness
  • July 20, 2020; 5:30 – 6:45 p.m. EDT

COVID-19 health care rationing has brought the blatant medical devaluation of the lives of people with disabilities into critical focus. Disability advocates are challenging the denial of equal medical treatment because of judgments about our quality of life. Not Dead Yet presenters will discuss and dialogue with attendees on three topics: the grim reality of COVID-19 infection in nursing homes and other institutional “death traps”, the disproportionate impact of COVID-19 on Blacks and other people of color, and advocacy against discriminatory crisis standards of care and COVID-19 triage which have led to groundbreaking federal settlements declaring unequivocally that treatment rationing based on disability is unlawful discrimination.

Facing the Barricades on the Intersections in IL

  • Presented by: Reyma McCoy McDeid
  • Track: Inclusion, Intersectional Work, Race & Equity
  • July 23, 2020; 12:00 – 1:15 p.m. EDT

As the IL movement dives deeper into conversations pertaining to diversity, terms like “intersectionality”, “cultural competence”, and “anti-racism” are being used with increasing frequency. But, do we have a shared understanding of what they mean? How does increasing our literacy of these additions to the IL lexicon assist us in creating truly inclusive spaces for all disabled people? In this session, we will discuss how Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs) are successfully engaging in this work and explore how all stakeholders in Independent Living can strive to ensure that the movement leaves no one behind.

Creating Curriculum for Youth Programs

  • Presented by: Katie Blank, Emily Garmager, and Chinette Gilmore
  • Track: Core Services
  • July 23, 2020; 1:30 – 2:45 p.m. EDT

Whether you meet with youth one-on-one or as a group, having a plan and knowing what information to provide helps the youth reach the program goals. Without the right resources and supports, it can be difficult to create lessons or develop a curriculum. Having a curriculum and lessons also can be a useful tool to help your center market youth programs to schools, parents, and vocational rehab counselors. During this workshop, I will teach you some essential skills to use while developing your program, creating a curriculum, and modifying lessons.

Voting Electronically / By Smartphone: West Virginia National Precedent

  • Presented by: Jim Dickson, Maggie Hart, and Ann McDaniel
  • Track: Advocacy & Policy Work
  • July 23, 2020; 3:00 – 4:15 p.m. EDT

Voters with disabilities in West Virginia who choose to vote absentee use their smartphones to vote thanks to recent legislation. This precedent-setting legislation addresses the growing movement among election offices to go to all mail-in voting, eliminating polling places. In this panel discussion, you will hear from key members of the coalition who drafted, passed, and implemented this model legislation. Attendees will leave with knowledge empowering them to replicate the legislation in their own states, making mail-in voting more accessible to people with disabilities.

Higher Etiquette: Cannabis in Disability Spaces

  • Presented by: Kings Floyd and Sarah Blahovec
  • Track: Advocacy & Policy Work
  • July 27, 2020; 1:00 – 2:15 p.m. EDT

Kings Floyd talks about the intersections of the Disability and Cannabis community. This session includes a brief overview of Cannabis, current policy initiatives at the local and national levels, and how Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs) can support consumers who are looking to try cannabis as a medical outlet. Sarah will discuss the local struggles of advocating for better cannabis sources and resources in Virginia. The session will create a foundational knowledge of cannabis in the disability space, discuss advocacy efforts, best practices, and end with a Question & Answer session. Kings Floyd is a disability rights advocate and activist in Washington, DC. She works on issues involving healthcare, education, and transportation, and focuses much of her time on youth involvement and mentorship. Her passion projects include advocating for intersectional justice and drug reform when it comes to cannabis.

Educating Nursing Facility Staff to Increase Transitions

  • Presented by: Suzanne de Beaumont and Tami Loya
  • Track: Core Services
  • July 27, 2020; 2:30 – 3:45 p.m. EDT

Section Q of the Minimum Data Set is a powerful tool in ensuring people with disabilities in nursing facilities are aware of their options to return to the community. New York found that nursing facilities were not complying with the CMS requirement to refer anyone who was interested in returning to the community to the Local Contact Agency (LCA). As the state identified LCA, New York Centers for Independent Living (CILs) started an Education and Outreach (E&O) program in 2018 for all New York nursing facilities. This workshop will share the nuts and bolts of the program and the surprising lessons learned.

The Role of the CIL in Addressing Racial Injustice – Panel Discussion

  • Presented by: Susan Dooha, Daisy Feidt, Stanley Holbrook, and Liz Sherwin
  • Track: Inclusion, Intersectional Work, Race & Equity
  • July 27, 2020; 4:00 – 5:15 p.m. EDT

The purpose of this workshop is to share best practice models implemented by Centers and provide a platform of knowledge and resources for Centers who want to become more inclusive in outreach and program service delivery.

The Feds Weigh In: Bioethics and Disability

  • Presented by: Kelly Israel, Marilyn Golden, Diane Coleman, and Anne Sommers (moderator)
  • Track: Advocacy & Policy Work
  • July 28, 2020; 1:00 – 2:15 p.m. EDT

This moderated panel presentation will share the major research findings and policy recommendations of the National Council on Disability (NCD) – an independent, nonpartisan federal agency – to Congress and the Administration from three of its five recent bioethics reports on the topics of disability discrimination in organ transplantation, assisted suicide laws, and medical futility policies. Participants will leave equipped with an understanding of the current state of each of the three topics and of federal recommendations to policymakers for reforms aimed at decreasing healthcare discrimination and improving access to life-saving medical care for people with disabilities.


  • Moderators: Sara Ann Joehnke and Grace Marie Leito from Arizona Statewide Independent Living Council
  • Panelists: Dana Marie Kennedy (State Director of AARP Arizona); Toby Edelman (from Center for Medicare Advocacy); Mark Parkinson (former Governor of Kansas, current President and CEO of the American Health Care Association) 
  • Track: COVID-19, Pandemic, and Emergency Preparedness
  • July 28, 2020; 2:30 – 3:45 p.m. EDT

IL History & Philosophy

  • Presented by: Ami Hyten
  • Track: Independent Living 101
  • July 28, 2020; 4:00 – 5:15 p.m. EDT

As we celebrate the 30th anniversary of the Americans with Disabilities Act, it is a good time to reflect on the Independent Living Movement history that brought advocates to the steps of the capital and ushered the Bill forward. Part history, part call to action, join us for a review of the history and philosophy of independent living.

Dismantling Disabling Barriers in Higher Education

  • Presented by: Deanna Yadollahi
  • Track: Core Services
  • July 29, 2020; 1:00 – 2:15 p.m. EDT

Many adults with disabilities have the potential to become successful higher education students at any age, but will surely face barriers to educational accessibility and inclusion. I will share experiences of my peers and myself as college students with disabilities, including the barriers faced and recommendations for our institution. By sharing my self-advocacy journey, attendees will learn my mistakes and successes regarding how to institutionally advocate for and support oneself and/or other post-secondary students with disabilities. A discussion will provide a space to share resources, experiences, and ideas to strengthen all our education advocacy skills.

Becoming an Anti-Racist Disability Advocate

  • Presented by: Sheri Burns and Cliff Perez
  • Track: Inclusion, Intersectional Work, Race & Equity
  • July 29, 2020; 2:30 – 3:45 p.m. EDT

Since the 2019 NCIL Conference, there have been difficult discussions and sometimes harsh statements from NCIL members on race, equity, inclusion / exclusion, discrimination, safety, and marginalization of our Black / Indigenous / People of color (BIPOC) brothers and sisters in the Independent Living Movement. NCIL’s January 2020 Statement on Equity and Race shared NCIL’s commitment to build a vision for a future of inclusion and anti-racism, both as a national organization and as a network of CILs. This workshop will explore with attendees what it means to be Anti-Racist and the ways we can become more purposefully inclusive and equitable in our systems advocacy work and IL services delivery.

SILCs Development of Resources for CILs (IL-NET Workshop)

  • Presented by: Paula McElwee, Jeremy Morris, and Sandra Breitengross Bitter
  • Track: SILC
  • July 29, 2020; 4:00 – 5:15 p.m. EDT

This panel discussion of Statewide Independent Living Council (SILC) Resource Development is sponsored by the SILC-NET (a part of the IL-NET). The panel will examine specific projects and how they were developed, how the SILC project opens opportunities for CILs, the challenges for the SILC in avoiding direct services and CIL supervision, and the benefits of this collaboration to the statewide network of Centers.

Home Usability 101: Barriers, Solutions, Funding, & Outcomes

  • Presented by: Kelsey Goddard and Jean Hall
  • Track: Advocacy & Policy Work
  • July 30, 2020; 1:00 – 2:15 p.m. EDT

In this session, Kelsey Goddard and Jean Hall will present findings from their national project regarding common home usability barriers for people with mobility impairments, possible solutions to address them, and resulting changes in community participation. In addition, we will explore best practices for finding funds to support home modifications for this population.

Out of the Margins: Bringing Disabled Youth into Leadership Roles

  • Presented by: Stephanie Woodward and Leah Smith
  • Track: Independent Living 101
  • July 30, 2020; 2:30 – 3:45 p.m. EDT

The ‘Out of the Margins’ project is aimed at providing knowledge to disabled youth about how organizations are organized and run. Research shows us that disabled people are not given the same opportunities to learn about the management of nonprofit organizations as their non-marginalized peers. Out of the Margins is an effort to allow disabled experts in the field to train others on how an organization is put together, from how to read policy and legislation to understanding board structure. This workshop will show participants how they can bring this project to their organization to not only ensure our next generation of disabled youth have a seat at the table, but that they have the tools to lead the conversation.

Access to Alternative Care Sites

  • Presented by: Sara Ann Joehnke
  • Track: COVID-19, Pandemic, and Emergency Preparedness
  • July 30, 2020; 4:00 – 5:15 p.m. EDT

Leveraging our Expertise to Promote our Mission!

  • Presented by: Michael Grier and Misty Dion
  • Track: Advocacy & Policy Work
  • July 31, 2020; 1:00 – 2:15 p.m. EDT

In this workshop, presenters will highlight how the Pennsylvania Association and member Centers for Independent Living (CILs) have leveraged their expertise to financially benefit the Association as well as the CILs. People who work in the Association and the CILs are experts in assisting people with disabilities. This expertise puts us in an enviable position, it gives us the opportunity to write proposals for various services on a statewide basis. It also allows us to display our culture and places the Independent Living philosophy on display across the state. Along with our advocacy, our ability to establish and build effective business relationships enhances future opportunities for the Association and the CILs.

Queering Disability Justice

  • Presented by: Victoria Rodriguez-Roldan, Talila A. Lewis, Shain Neumeier, Lydia X. Z. Brown, and Ma’ayan Anafi
  • Track: Inclusion, Intersectional Work, Race & Equity
  • July 31, 2020; 2:30 – 3:45 p.m. EDT

This workshop focuses on the intersection of queerness and disability justice and how LGBTQ people with disabilities are particularly marginalized within the disability movement. The goal is to examine ways for the movement to be more inclusive of the community.

SILCs Doing Systems Advocacy

  • Presented by: Mel Leviton, Morgan Daly, Shelly Simmons
  • Track: SILC
  • July 31, 2020; 4:00 – 5:15 p.m. EDT

This session will review and discuss creative and effective methods that lead to successful advocacy. In this workshop, you will learn the practicality of board and council positioning, consistent messaging, coalition building and more.

Health Policy and Independent Living in the 2020s

  • Presented by: Jae Kennedy, Lex Frieden, Liz Wood, Jean Hall, Gil Gimm, and Karl Cooper
  • Track: Advocacy & Policy Work
  • August 3, 2020; 1:00 – 2:15 p.m. EDT

The 2020 federal elections will begin a new chapter in federal health reform. Since 2016, the Collaborative on Health Reform and Independent Living ( has studied the impact of health policy changes in the disability community. We’ve found that implementation of the Affordable Care Act coincided with higher rates of insurance coverage, lower rates of access problems, and (in states that opted to expand Medicaid eligibility) higher rates of employment for working-age adults with disabilities. In this nonpartisan workshop, CHRIL members will describe key elements of the presidential candidates’ policy platforms and discuss possible implications for the health and independence of people with disabilities.

We are Sorry to Report the Revolution will Include Policies and Procedures

  • Presented by: Ami Hyten
  • Track: Inclusion, Intersectional Work, Race & Equity
  • August 3, 2020; 2:30 – 3:15 p.m. EDT

Organizations and agencies use handbooks with written policies and procedures to govern all aspects of operations, from fiscal management to human resources. Policies and procedures have been regarded as well-written when they have reduced exposure to liability for organizations and set out clear steps for employees to follow. Participants will re-define “well-written” as they learn to “pull back” the language policies and procedures use to identify implicit bias and suggest ways to craft policies and procedures to better promote equity and address bias while providing protection for organizations and the people in them.

GA SILC: The Story of the Americans with Disabilities Act

  • August 3, 2020; 4:00 – 5:15 p.m. EDT

The Zebra Among Us

  • Presented by: Sheryl Grossman
  • Core Services Track
  • August 4, 2020; 1:00-2:15 p.m. Eastern

We have always been here, waving signs, chanting slogans, learning skills, being mentored, mentoring others, writing letters, visiting with legislators—but largely overlooked when our unique needs have been brought up within the Independent Living Movement. We are Zebras, the unique, rare, non-standard ones. The ADAAA changed that. For the first time, many of us felt the power of protection under the Americans with Disabilities Act that others felt 18 years earlier. Today is our day to shine and lead within the ILM—these are our stories.

Sex Ed for People with I/DD: A Video Series

  • Presented by: Alie Kriofske Mainella and Cara Liebowitz
  • Inclusion, Intersectional Work, Race & Equity
  • August 4, 2020; 2:30 – 3:15 p.m. EDT

Sexual health education is crucial for all young people; people with disabilities included. Most sex education materials are not targeted for or inclusive of learners with disabilities. This session will give participants the background and a screening of an educational video series that is by and for youth with intellectual and developmental disabilities. Participants will learn about the videos and how they can be incorporated into sex education efforts.


  • Presented by: Yolanda Vargas, Reyma McCoy McDeid, Dustin Gibson, Allilsa Fernandez, Stan Holbrook
  • August 4, 2020; 4:00 – 5:15 p.m.

Working outside the system to get what we need. Independent living has not supported BIPOC to the best of its ability but that doesn’t mean that BIPOC haven’t left a mark on making the world better for all Disabled people. What can we learn from each other? Going forward how we can work together?

Talking Points

  • Language barriers and how different cultures relate to disabilities and how there is no “right way”.
  • How CILs can step away from legislation and find other ways to address the needs of those that they serve.
  • How to respectfully share knowledge when grassroots organizations want to do legislative work.
  • How to recognize and respect the work of  BIPOC in areas like housing, food security and other basic needs as Disability rights work.

Alliance for Equality: Youth Storytellers Leading the Evolution of the Revolution

  • Presented by: Kim Dietrich and Daisy Lopez
  • Track: Inclusion, Intersectional Work, Race & Equity
  • August 5, 2020; 1:00 – 2:15 p.m. EDT

In the Summer of 2019, the ten George Wolfe Youth Program Interns used a cast of multiply-marginalized youth with disabilities to create a serial story, the Alliance for Equality. The series provides young people with characters and stories that reflect their experiences, and show the ways young people with disabilities can express power and control in their lives. The group selected the topic of Bullying and used their experiences to tell a story in graphic/comic book format about how young people can support one another in responding to bullying and advocate for meaningful change in their schools to address it.

Disability Community Resilience – Before, During and After Disasters

  • Presented by: Shaylin Sluzalis, Germán Parodi, and Valerie Novack
  • Track: COVID-19, Pandemic, and Emergency Preparedness
  • August 5, 2020; 2:30 – 3:45 p.m. EDT

The Partnership for Inclusive Disaster Strategies – the nation’s experts on disability rights, accessibility and inclusion throughout all phases of emergency and disaster operations, presents Disability Community Resilience Before, During, and After Disasters. This workshop will focus on disability rights in disasters, community-found promising practices for inclusive preparedness, disaster risk reduction, and advocacy efforts you can take home with you. This will be an engaging discussion on empowering whole community resilience and systems advocacy for disability inclusion before, during, and after disasters.

Shift Your SILC: Moving Beyond Diversity to Intersectionality

  • Presented by: Amber O’Haver, Reyma McCoy McDeid, and Sandra Breitengross Bitter
  • Track: SILC
  • August 5, 2020; 4:00 – 5:15 p.m. EDT

Intersectionality, as coined by Dr. Kimberlé Crenshaw, is a term originally devised to describe how Black women experience oppression at the crossroads of gender and race- and how these identities and experiences cannot be separated from each other. The term has since become a key buzzword, applied to a variety of civil rights movements.  It challenges every social justice community to recognize, include, and lift up the unique experiences of people whose identities cut across multiple marginalizations – this includes SILCs and SILC stakeholders. 

For this SILC-focused session, presenters will share personal journeys and experiences that challenged assumptions about disability identity and focus on the fundamental concept of intersectionality and the critical need for SILCs to critically assess, not only their diversity representation, but systemic barriers that limit the inclusion of multiply marginalized people in the first place. If we as the disability community are to achieve our goal of collective liberation, SILCs MUST do better at learning, understanding and recognizing our own implicit biases and aim to confront the largely unspoken demand that multiply marginalized peers check their non-disability specific identities at the door in order to engage in the disability rights movement – and how, in fact, acknowledgment and validation of a person’s intersecting identities can be a unifying force for inclusion and liberation for all of us.  

While awareness is necessary, it is NOT sufficient. As Councils and white leaders with disabilities who benefit from systems that perpetuate bias, we have the power and privilege to help redesign and rebuild our SILCs so they meaningfully include the voices of our peers with disabilities who are most marginalized. Representation matters and presenters will discuss the importance of working to center and amplify the voices of our peers with disabilities who are Black, Indigenous, and other people of color, members of the racially marginalized disabled LGBTQ community- particularly gender diverse individuals- and disabled members of other marginalized communities, as well.