2019 Annual Conference Workshops

Poster Sessions

A poster session is the presentation of research information with an academic or professional focus. Posters are displayed throughout the NCIL Conference space at the discretion of the presenter.

Under the Red Umbrella: CILs Should Start Supporting Sex Workers in Their Communities

  • Ignite the IL Network Track
  • Poster by: Yolanda Vargas and Parker Glick

Sex workers are part of the disability community. Sex work is one of the most common forms of employment for people with limited access to support and disabilities that make holding socially acceptable jobs difficult. Presenters will compile information from people who either have experience directly with sex work or serving people in the sex work industry. This will allow discussion of concrete examples of the things that work and the things that don’t. It will also create a space where people can talk about the common misconceptions people have about sex work.

CILs and Healthcare Contracting: Assessing Progress

  • Healthcare Track Sponsored by the WITH Foundation
  • Poster by: Richard Petty, Brooke Curtis, and Elizabeth Blair

Centers for Independent Living have a critical role in in managed long-term services and supports and other delivery system reforms taking place around the country. The core services that CILs provide can help to improve health and quality of life outcomes for individuals with disabilities in these programs, and CILs have increasingly been marketing these services to health plans and other healthcare organizations. This poster, based on research conducted by the Aging and Disability Business Institute and by ILRU, will explore the progress that CILs have made in contracting with healthcare entities, and the role that the core services play in those contracts.

Workshop Sessions

The following workshops have been selected by NCIL’s Annual Conference Subcommittee. Great care has been taken to ensure that the workshops are, as a whole, relevant to this year’s Conference theme and valuable to a cross-section of CIL, SILC, and IL Association staff, board members, consumers, and other advocates.

Workshops are classified by target audience: Front Line Staff & Consumers, Advocates & Project Directors, or Executive Directors & Board Members. Workshops are also classified as Newcomer, Experienced, or Appropriate for all levels.

Workshop Tracks

  • Ignite Our Political Power Track: Workshops addressing the political power of the disability community, including voting rights, running for office, and systems advocacy.
  • Ignite the IL Network Track: Workshops addressing innovation and promising practices in the core services of Centers for Independent Living, especially the new core services of youth transition, transition from institutions to the community, and avoiding institutions. 
  • Healthcare Track Sponsored by the WITH Foundation: Workshops related to healthcare, including healthcare policy and advocacy, along with the healthcare landscape and contracting with Managed Care Organizations and other healthcare providers.
  • Ignite Our SILCs Track: Workshops covering best practices and innovation in operations and programs of Statewide Independent Living Councils.

Concurrent Workshops I

Monday, July 22, 1:00 – 2:15 p.m.

DIA Today: A Better Way

  • Ignite Our Political Power Track
  • Presented by: Dara Baldwin, Bruce E. Darling, Anita Cameron, and Dawn Russell
  • Appropriate for all audiences and knowledge levels   

The Disability Integration Act (DIA) is a civil rights, bipartisan and bicameral legislation in the 116th Congress. S. 117 is sponsored by Senators Schumer (D-NY) and Gardner (R-CO) and H.R. 555 is sponsored by Representative Sensenbrenner (R-WI). This presentation will discuss the reintroduction of DIA and the campaign taken on by thousands to move it towards becoming law. Since 2015, there has been collaborative and inclusive activism to get over 100 national and 500 local and state organizations to support DIA. In this session, presenters will discuss the political and organizing leadership of disabled people to move the next civil rights law in disability.

Queer Disabled Justice

  • Ignite Our Political Power Track
  • Victoria M. Rodríguez-Roldán, Talila Lewis, Esq., Ma’ayan Anafi, Lydia X. Z. Brown
  • Appropriate for all audiences. Knowledge level: Experienced

The purpose of this workshop is to engage the intersection of disability and LGBTQ identity from a social justice perspective. Discussion shall include ways to make the disability advocacy movement, including the IL field, more inclusive of LGBTQ people with disabilities and more social justice-minded.

Advocacy and Organizing: Using These Tools to Create Power and Change

  • Ignite the IL Network Track
  • Presented by: Chris Worth and Derek Wetherell
  • Target audience: Advocates and Project Directors. Appropriate for all knowledge levels.

Advocacy and organizing are both important tools for Centers for Independent Living. Both can help us create the change we want to see in the world. However, it is important to know how these methods of change are different and how to successfully utilize both to achieve the outcomes you want. In this session the facilitators will discuss power and how it works and give you some basic tools to see power shift in your community through the use of advocacy and organizing!

Running for Office 101

  • Ignite Our Political Power Track
  • Presented by: Lianna Stroster
  • Appropriate for all audiences and knowledge levels.

Thinking about running for office but don’t know where to start? EMILY’s List, the nation’s largest resource for women in politics has helped Democratic women for the past three decades run and win races up and down the ballot, will guide you through the nuts and bolts of planning your run, teach you how to get your house in order, and get you ready to take the first steps toward running — and winning. You don’t need to be a declared candidate or actively planning to run, attendees just need an interest in learning the basics of being a candidate.

REAADI in Disasters: Igniting Community and Political Power to Save Disabled Lives in Disasters

  • Ignite Our Political Power Track
  • Presented by: Dustin Snowadzky, Valerie Novack, Robbie Kopp, and Stephanie Hydal
  • Appropriate for all audiences and knowledge levels.

Three Portlight Inclusive Disaster Strategies Fellows will provide an overview of existing emergency planning and their fellowship initiatives to build support for the Real Access for Aging and Disability Inclusion in Disasters Act (REAADI). Stephanie will lead a training so everyone is REAADI for powerful conversations with our representatives and communities for access to disaster planning, response, and recovery. Dustin will explore the intersection of disability, disasters, and the frontiers of technology. Valerie will discuss using policy and partnerships to address gaps in response efforts. Robbie Kopp of Able SC will discuss experiences in a CIL supporting disaster-impacted disability community through 4 disasters. 

Concurrent Workshops II

Wednesday, July 24, 9:00 – 10:15 a.m.

Taking it to the Streets – How to Mobilize Your CIL

  • Ignite the IL Network Track
  • Presented by: Robbie Roppolo and Candie Burnham
  • Appropriate for all audiences and knowledge levels.

Learn about Atlantis Community Inc.’s answer to serving consumers they couldn’t reach through traditional efforts. When consumers experience barriers to accessing the traditional IL services at the Center, the Center comes to them. The Mobile Unit allows Atlantis to serve the underserved populations such as consumers with psychiatric disabilities, rural consumers, consumers experiencing homelessness, or individuals who can’t otherwise access services as a result of their disability.

Partners in the IL Network: Roles & Responsibilities

  • Ignite Our SILCs Track
  • Presented by: Ann McDaniel and Jeremy Morris
  • Target audience: Executive Directors and Board Members. Appropriate for all knowledge levels.

This workshop will provide clarity on the roles and responsibilities of the partners in the IL Network – the CILs, SILC, and DSE. An overview of the duties and responsibilities in the law will be provided. The Indicators and Assurances for SILCs will be reviewed, as well as the Assurances for DSEs. Participants will be encouraged to share experiences, issues, and potential solutions – providing peer support for each other.

How to Go From Being the Best Kept Secret to the Best Known!

  • Ignite the IL Network Track
  • Presented by: Michelle West
  • Appropriate for all audiences and knowledge levels.

Learn how anyone associated with your CIL can promote what you do so your CIL will be known in your areas as the go-to place for people with disabilities!

Advocacy – It’s Not Just A Reaction

  • Ignite Our Political Power Track
  • Presented by: Steve Higgins and Kimberly Tissot
  • Appropriate for all audiences and knowledge levels.

Advocacy is at the core of the Independent Living & disability rights movements. Yet with changes in staff, community, leadership, and laws, many are being told that we can no longer advocate or even mention the “A” word. The presenters in this workshop will not only be dispelling all of those myths but explore the many ways effective advocacy can and should take place at every Center for Independent Living across our nation through “igniting” our membership.

Fueling Business Acumen: How CILs are Securing Contracts with Health Plans and Payers

  • Healthcare Track Sponsored by the WITH Foundation
  • Presented by: Richard Petty, Bill Henning, Audrey Schremmer, and Patricia Yeager
  • Appropriate for all audiences. Knowledge level: Experienced.

Many CILs are seeking to expand their services by contracting and partnering with health plans, managed care organizations and other payers. But how do you build these relationships and why are these contracts important to meeting the needs of the disability community? Join us for a panel discussion with CILs who are leading the way in working with health plans and payers to learn more about how they got to “the table”, what services health plans and payers are most interested in, and about the growth and financial support their CILs have experienced through contracting with health plans and payers.

Concurrent Workshops III

Thursday, July 25, 9:00 – 10:15 a.m.

Centene Corporation and NCIL Address Gaps in Disability Access – An Award-Winning Idea

  • Healthcare Track Sponsored by the WITH Foundation
  • Presented by: Sarah Triano, Kelly Buckland, and Theresa Flanders
  • Appropriate for all audiences and knowledge levels.

To address disparities in disability access to healthcare, Centene and NCIL partnered in 2017 to implement a National Barrier Removal Fund (BRF). The program allows providers to apply for competitive funding to remediate priority disability access barriers. Grant recipients also receive tailored technical assistance and training from NCIL, local CILs, and Centene’s local health plans, including on-site Accessibility Site Reviews to verify disability access data in provider directories. Centene and NCIL will present the 2018 BRF results, talk about the current BRF implementation in Kansas, Florida, and New Mexico, and discuss the future of the initiative.

SILC Mentorship that Leads to Successful Engagement

  • Ignite Our SILCs Track
  • Presented by: Lauren Snyder Roche and Dawn Lyons
  • Target audience: Executive Directors and Board Members. Appropriate for all knowledge levels.

This workshop will provide participants with ideas and resources on how to create an individualized mentoring program to help new council or board members become confident, knowledgeable, and active participants. Participants will be introduced to two types of mentoring programs currently being used with success within two Statewide Independent Living Councils: one is a formal program adopted by the Virginia SILC and the other is an informal mentoring program being used by the Nevada SILC.

Using the Minimum Data Set (MDS) to Fuel System Change

  • Ignite the IL Network Track
  • Presented by: Ami Hyten and Mike Oxford
  • Target audience: Advocates and Project Directors. Knowledge level: Experienced.

The Minimum Data Set (MDS) collects a lot of information about the people living in nursing facilities in our states. As significant revisions were being made to the document, advocates were able to make a place at the table and make specific improvements to the MDS Section Q, relating to residents’ ability to return to their own homes. Learn about the MDS, changes made to the MDS, and how the information in the MDS can be used by advocates to promote systems change and community integration to free our people!

Reproductive Justice as Part of Independent Living

  • Ignite Our Political Power Track
  • Presented by: Rebecca Cokley, Jamila Taylor, and Azza Altiraifi
  • Appropriate for all audiences and knowledge levels.

Given the experience of the Kavanaugh confirmation, the rape of the disabled Native American woman in Arizona, and ongoing and repeated attempts to use disability as a wedge issue in public policy spaces, there is a real need for a conversation at the intersection of disability rights and reproductive justice. How do we talk about issues of consent, access to reproductive healthcare, the right to bodily autonomy, within spaces both inside and outside of the disability community?

Chronic Pain and the Opioid Crisis 102: Mobilizing for Chronic Pain and Substance Use Disorder Advocacy In Your Community

  • Healthcare Track Sponsored by the WITH Foundation
  • Presented by: Lindsay Baran, Sarah Blahovec, and Eiryn Griest Schwartzman   
  • Appropriate for all audiences and knowledge levels.

People with chronic pain continue to experience increasing barriers to accessing and maintaining adequate pain management. This interactive workshop will focus on gaining a deeper understanding of policies driving these barriers and strategies to increase awareness and advocate to increase access to the full spectrum of pain management options. Presenters will provide up-to-date information on federal laws and regulations, state legislation, and other efforts impacting people with chronic pain. Participants will share what’s happening in their states and communities. A significant amount of time will be allocated for the group to discuss opportunities for advocacy, both national and locally.

Concurrent Workshops IV

Thursday, July 25, 10:30 – 11:45 a.m.

Housing: How Screwed Are We? And What Can We Do About It?

  • Ignite Our Political Power Track
  • Presented by: Brian Peters, Jeff Iseman, and Kimberly Meck (Heymann)
  • Appropriate for all audiences and knowledge levels.

NCIL’s Housing Subcommittee will cover the challenges facing people with disabilities who are seeking housing assistance. The shortage of accessible, affordable, healthy / nontoxic, decent, safe, and integrated housing in communities is well known. But how severe is this problem? Different aspects will be covered ranging from someone seeking an ordinary apartment, to a homeless individual, to a person transitioning from a nursing institution. The presenters will vary between providing national numbers and discussing brief case studies of challenges encountered in local communities by CILs. Opportunities for advocacy will be outlined with each aspect of the numerous housing challenges faced.

One Voice, One Vision: Raising the Bar for Statewide Collaboration

  • Ignite Our SILCs Track
  • Presented by: Paula McElwee, Jeremy Morris, Kathy Foley, and Kathy Cooper
  • Appropriate for all audiences and knowledge levels.

This panel presentation sponsored by the SILC-NET (a part of the IL-NET) will expand upon the national conversation about collaboration among the CILs in a state, the SILC, and the DSE. One Voice, One Vision is about seeing collaboration as something more than just working together, as required, on writing the State Plan for Independent Living or any other activities the network might choose. It will broaden the conversation to the aspects of collaboration that create an integrated IL Program and unity within a statewide network and some proven strategies for how to achieve it. Representatives from two states will share their challenges and successes in moving their networks to the next level of collaboration.

Improving Independent Living Services to Alaska Natives           

  • Ignite the IL Network Track
  • Presented by: Joan Herbage O’Keefe and Gail Dabaluz
  • Appropriate for all audiences. Knowledge level: Experienced.

Lessons learned and best practices! Southeast Alaska Independent Living, in partnership with the Administration for Community Living (ACL), National Council on Independent Living (NCIL), Association of Programs for Rural Independent Living (APRIL), Alaska Native Elders Care and strategic tribal partners, implemented the IL-STAND demonstration project. Attendees will gain from this workshop presentation: an increased understanding of service needs of southeast Alaska Natives with disabilities; information about how SAIL increased cultural competency of staff, building capacity to deliver five core services in six communities; and ideas for replication across the country.

How to Strengthen the IL Network in Your State

  • Ignite the IL Network Track
  • Presented by: Maureen Ryan and Lindsay Miller
  • Appropriate for all audiences and knowledge levels.

Wisconsin Coalition for Independent Living and New York Association on Independent Living will provide information on what State Associations across the nation look like and discuss the components of a strong IL network.

Difficult Conversations: How the #LiveOn Campaign Challenges Ableism and Confronts Suicide in the Disability Community

  • Healthcare Track Sponsored by the WITH Foundation
  • Presented by: Leah Smith
  • Appropriate for all audiences and knowledge levels.

The #LiveOn Campaign is a project by and for disabled people showing how worthwhile life is, despite the heavy burden of living in an ableist society. Many of us are bullied, forced into nursing facilities by the institutional bias, or discriminated against at school and work. While it is not often discussed in disability rights spaces, oppression can and does lead to depression and sometimes suicide. This workshop will describe current efforts to confront this problem directly with #LiveOn: a multi-media campaign showing disabled people who choose to #LiveOn. It will train CIL staff about how to connect those at risk with resources they need, many of which are available through #LiveOn.

Concurrent Workshops V

Thursday, July 25, 1:30 – 2:45 p.m.

Intersections in Healthcare Accessibility and Business Acumen

  • Healthcare Track Sponsored by the WITH Foundation
  • Presented by: Patricia Yeager, Priti Pandya, Dr. Stacy Jones
  • Appropriate for all audiences. Knowledge level: Experienced.

People with disabilities face well-documented disparities: We have twice the difficulty finding doctors who meet our needs as our non-disabled counterparts, and poorer access to key preventative-health screenings. However, promising developments are transforming the landscape: new standards for accessible medical-diagnostic equipment (MDE) were finalized in 2017; new Medicare payment policies promise improved preventative-care access for harder-to-serve patients; increased attention paid to social determinants of health by providers and managed care organizations is promoting the rethinking of accessible, culturally-competent care across-the-lifespan with an understanding that such innovations enhance quality-of-care in a cost-effective manner. This panel will address these innovations from an IL perspective, discussing how CILs have successfully identified opportunities and become involved in this work through business acumen and partnerships with hospitals, providers, and healthcare industry partners.

Building A Strong Board of Directors

  • Ignite Our SILCs Track
  • Presented by: Sha’ Anderson and Jeremy Morris
  • Target audience: Executive Directors and Board Members. Appropriate for all knowledge levels.

The workshop on how to build a strong board of directors will enable participants to develop a strategic plan to building a strong board. By analyzing what the needs are related to board member talents and skills that are already present, participants will develop a board matrix with clear and concise goals tying back to the mission statement. Participants will learn the importance of a vision statement that projects the future terms of the organization. Participants will understand the importance of best practices, while remaining relevant in meeting the needs of changing climate and defining key responsibilities of board members. Any participant in this workshop should bring their current board list indicating the diversity of the membership and have on hand a current strategic plan, if applicable. Facilitators will have these items on hand for the group interactive discussion.

Moving Out: Preparing and Empowering Young Adults in Transition

  • Ignite the IL Network Track
  • Presented by: Hayley Steinlage
  • Appropriate for all audiences and knowledge levels.

In the IL community, young adults may experience transitions from a variety of settings: a family home, a college campus, an institution. Further, they may define independent living differently from previous generations. What are the challenges young adults with disabilities face when moving out on their own? What resources help them experience successful transitions and live as independently as they wish? We conducted interviews with six young adults to answer these questions. Come hear their perspectives on navigating a transition to community and independent living and join in a discussion about ways to empower other young adults on moving out.

Unheard Screams (Human Trafficking)

  • Ignite the IL Network Track
  • Presented by: Ericka Reil, Jan Derry, Jae Jin Pak, and Kim Colville
  • Appropriate for all audiences and knowledge levels.

This workshop will cover the basics of human trafficking, what to look for if a person is being trafficked, what some Centers for Independent Living are currently doing to prevent trafficking of people with disabilities, what policies are currently in place and what is in the future. A designated safe space will be provided.

Acting B-A-D: A Patient Advocacy Strategy

  • Healthcare Track Sponsored by the WITH Foundation
  • Presented by: Andrés J. Gallegos, Esq. and Jennifer M Sender, Esq.
  • Appropriate for all audiences and knowledge levels.

Despite nearly three decades since the passage of the ADA, and five decades since the passage of Section 504, access to accessible healthcare for persons with disabilities remains elusive. The reasons for that range from ignorance, indifference, or outright discrimination by healthcare providers. With the possible dismantling of the Affordable Care Act, now more than ever, persons with disabilities and their advocates must be their own patient advocate, and that advocacy is enhanced when a person uses an organized strategic approach requiring them to Act Before – After – During their healthcare appointments.