10:00 – 10:05 - Welcome

Welcome and introduction of video – Ellen Dyke (Senator speaking at 1:00, introduce SPARC, thank sponsors, anniversary of ADA, thank GW, Marymount, and Consortium of Colleges and Universities, mention research papers, introduce video)

10:05-10:15 - Video

Video of lived experience

10:15 – 10:16 - Voice over introduction of First Fireside Conversation – Lived Experiences, Navigating Barriers, and Aspirations

10:16-11:00 Fireside Conversation 1, “Lived Experiences, Navigating Barriers, and Aspirations”

Moderator

Aaron Kaufman, Maryland State Delegate and disability rights advocate (Confirmed)

Conversationists

1. Mr. Toobin (SPARC parent) and other parents, caregivers, and participants
2. Shea Magale – disability rights advocate and author of American Boy, Hockey’s Hidden Gods, and This is Not a Love Scene

10:16 – 10:18

Moderator: The first conversation will center on the voices of families whose lives are shaped by love, advocacy, and the daily realities of supporting adults with severe and multiple disabilities. This is not just a space for sharing challenges – it’s a space for illuminating dignity, possibility, and systemic shifts needed to create a more inclusive future. Each story shared here holds insight into what dignity, inclusion, and agency can look like when we presume competence, honor lived experience, and design policies that reflect real life.  (The questions will be discussed with and among conversationists. The moderator and the conversationalists can build on each other’s conversation – and add, agree, or disagree with what is being said so that it parallels a true conversation.)

10:18 – 10:35

Question 1: What does a typical day look like for you or your family member, what brings them joy, connection, or a sense of purpose, and where do you encounter barriers or preconceived assumptions that limit their opportunities for joy, connection, or purpose?

10:35 – 10:50

Question 2: What systems or supports have been hardest to access – and how have you had to advocate or adapt to meet your or your family member’s needs?

10:50 – 10:58

Question 3: As a family member, when you picture a truly inclusive future for your loved one - one where they can grow, belong, and contribute - what specific changes in our systems are needed to make that future real?

10:-58 – 11:00 

Questions from the audience and virtually

11:00 – 11:01 – Voice Over Introduction of Second Fireside Conversation

11:01 – 12:00, Fireside Conversation 2, “Addressing Gaps and Advancing Equity”

Moderator

Maryland Delegate Aaron Kaufman, Maryland State Delegate and disability rights advocate.

Conversationalists

1. Jeff Chair McKay, Chair Fairfax County Board of Supervisors
2. Congressperson Jennifer McClellan
3. Congressperson James Walkinshaw
4. Virginia Delegate Irene Shin
5. Congressperson Don Beyer

11:01 – 11:03

Moderator: The second conversation centers a population often overlooked in policy – adults with severe and multiple disabilities. Their needs may be complex, but that complexity demands leadership, not avoidance. Our discussion will explore real gaps and real opportunities to build systems that honor dignity, inclusion, and agency. Equity isn’t complete until it reaches those most profoundly impacted.

(The questions will be discussed with and among conversationists. The moderator and the conversationalists can build on each other’s conversation – and add, agree or disagree with what is being said so that it parallels a true conversation.)

11:03 – 11:20

Question 1: Adults with severe and multiple disabilities are often labeled “too complex” or “too few’ to prioritize – yet their needs are among the most urgent. As a leader, how do you ensure that equity includes those whose support needs challenge our systems the most?

11:20 -11:37

Question 2: Where current systems fall short – due to underfunding, fragmentation, or access barriers – what steps can the government take to better support the aspirations and daily lives of adults with severe and multiple disabilities?

11:37 -11:55

Question 3: How can state and county leadership strengthen inclusion, coordination, and accountability – so that adults with severe and multiple disabilities are not just served, but truly seen, supported across programs and integrated in communities?

11:55 – 12:00

Questions from the audience and virtually

12:00-1:00

Break for lunch

1:00 – 1:15 Keynote

1:00 – 1:01

Introduce Keynote Speaker, Voice – over introduction or in person -

Tim Kaine, Senator (confirmed)

1:01 – 1:15

Keynote address – Senator Tim Kaine

1:15 – 1:16 – Voice over introduction of First Panel Discussion

1:16 – 2:10, Panel 1 – Biases “Challenging Limiting Narratives – Undoing Ablism, Implicit Bias, and Outdated Assumptions”

Moderator:

Cortney Heykoop, CEO of Clover Leaf Wealth Strategies (Confirmed)

Panelists

1. Debi Alexander, Esq. , CEO SPARC (confirmed)
2. Jerry Hulick, Member of United Cerebral Palsy National Board of Trustees, principal and consultant with Caring Consulting Group, and Founder of the Washington Group Special Care Planning Team (confirmed)
3. Dr. Nicci Dowd, Assistant Director of Education, Marymount University, explores barriers related to diversity, equity, and inclusion in education and raising awareness for students with disabilities and their families (confirmed)
4. Merrill Friedman, Regional Vice President, Inclusive Policy and Advocacy, Elevance Health (confirmed) and
5. Don Beyer, Congressman, co-introduced the ENABLE Act to help people with disabilities save for the future in ABLE accounts, allowing for increased contributions, a savers’ credit, and rollovers from 529 plans. Byer supports ABLE tax-advantaged savings accounts that help individuals with disabilities save money without losing federal benefits like Medicaid Accounts (awaiting a response)

Panelists:

Question 1: Debi Alexander and Jerry Hulick

Question 2 : Dr. Nicci Dowd

Question 3: Merrill Friedman and Congressman Don Beyer

1:16 – 1:17

Moderator: This discussion will take an honest look at the structural biases— including ableism, implicit bias, inequitable access, and outdated policy frameworks— that continue to limit possibilities for adults with severe and multiple disabilities. The panel will explore what must change for our systems to truly honor dignity, interdependence, and equity, and challenge the persistent assumption that “access” refers only to facilities rather than to full participation in a society that values every individual. Together, we will explore pathways toward models that promote agency, interdependence, and equitable opportunities.

1:17 – 1:31

Question 1: What assumptions embedded in our current systems most powerfully limit the lives of adults with severe and multiple disabilities - and what would it look like to dismantle those assumptions at the policy, practice, and cultural levels? (This question invites the panel to name the invisible forces: ableism, risk-averse cultures, compliance-driven frameworks, and the narrow definitions of “independence” that often erase interdependence.

1:31 – 1:46
Question 2: How can we redesign access, so it moves beyond physical entry into buildings and becomes access to belonging, contribution, dignity, agency, and participation for people whose support needs are significant and lifelong? (This question reframes access as a societal obligation, not a facility checklist.)

1:46 – 2:01
Question 3: What concrete shifts - in funding structures, policy design, financial management practices, and community partnerships - are required to build models that honor agency and interdependence for adults with severe and multiple disabilities, rather than defaulting to assumptions of protection or limitation? (This question centers on adults with high support needs, who are too often excluded from “innovation” conversations.)

2:01 – 2:10
Questions from the audience and virtually

Voice over reading lived story

2:10 – 3:05
Panel 2 - Health Care – “Barriers to Equitable Healthcare Access”

2:10 – 2:11 Voice-over introduction of second panel discussion

Moderator

Senator Kannan Srinivasan, Virginia State Senator, served in the Virginia House of Delegates on the Health and Human Services Committee and past Chair of the Virginia Department of Medical Assistance Services (confirmed).

Panelists

1. Jessica Bonness, Professor, Art and Design, Marymount University
2. Dr. Kevin O’Connor (confirmed) GW faculty - School of Medicine and Health Sciences and Adjunct Associate Professor, Health, Human Function and Rehabilitation Sciences, and
3. Hannah Irsfeld, Esq. General Council NOVA, Vice Chair, SPARC, and expert Medicaid reform (confirmed)
4. Dr. Megan Mahowald, Marymount University, Program Director, Speech-Language Pathology graduate program – advances equitable access to communication and healthcare for individuals with complex communication needs (confirmed)

Question 1 - Jessica Bonness

Question 2 – Dr. Kevin O’Connor, and Hannah Irsfeld, Esq. 

Question 3 – Dr. Megan Mahowald

2:11 – 2:12

Moderator: This conversation centers on the healthcare gaps that disproportionately affect adults with severe and multiple disabilities – highlighting the:                               

• shortage of trained doctors and other health care providers, and barriers to personal assistance services that truly meet the needs of adults with complex needs
• siloed nature of medical systems,  
• communication challenges for a population that may be hearing-impaired, blind and/or nonverbal,  

Panelists will explore the real-world consequences of these limitations and highlight emerging strategies for inclusive, whole-person healthcare.

2:12 – 2:25
Question 1 - What are some of the structural barriers that arise when hospitals and care facilities are not designed to meet the needs of adults with complex disabilities, and how might we reimagine medical environments as places of dignity, agency, and inclusion?

2:25 – 2:45 
Question 2 - What systemic barriers, including in the Medicaid system, keep doctors and other healthcare and personal assistance providers from entering into or staying in complex disability care and what can be done to alleviate those barriers?

2:45 – 3:00

Question 3 - How do siloed medical, social, and behavioral systems fail adults with severe and multiple disabilities, and what coordinated approaches in care delivery - including true communication access for people who are blind, hearing‑impaired, or nonverbal - would meaningfully improve care?

3:00 – 3:05 Questions from the audience and virtually

Voice-over - reading lived story

3:05 – 3:45

Panel 3 – Reforms, Innovations and Bold Imagination “Designing a Future that includes Us”

3:05 -3:06 
Voice-over Introduction of Third Panel Discussion

Moderator

Senator Barbara Fravola (tentatively confirmed), Virginia State Senator - Chair Rehabilitation and Social Services Committee, Member Finance and Appropriations, Education and Health, Courts of Justice and Rules, often focusing on healthcare.

Panelists

1. Dr. Bonnielinn Swenor, Endowed Professor of Disability Health and Justice and Director of the Johns Hopkins University Health Research Center
2. Dr. Qing Zeng, Director, Biomedical Informatics Center, and Professor, Department of Clinical Research and Leadership, George Washington University School of Medicine and Health Sciences (confirmed)
3. Jamie Dyke, Licensed Clinical Social Worker, certified Person-Centered Thinking Mentor, Charting the Life Course Facilitator, and Learning Manager, the Center of Excellence, Elevance Health, and Member of the Culpeper Town Council

Question 1 - Dr. Bonnielinn Swernor

Question 2 - Dr. Qing Zeng

Question 3 - Jamie Dyke, LCSW         

3:06 -3:07

Moderator: What could the future look like when we center those with the most intensive support needs? This panel will explore transformative policy reforms - spotlighting inclusive infrastructure, creative therapies, and breakthrough innovations, such as AI-assisted communication and participatory research.  We invite bold imagination and practical reform – because inclusion isn’t a distant ideal, it’s a design challenge we must meet now. If we center those with the most intensive support needs in our policies, technologies, and care systems, we may begin to build a future rooted in dignity, agency, and inclusion.  Let’s explore what’s possible and what it will take to turn vision into lasting change.

3:07 – 3:19

Question 1 - Given the persistent exclusion of adults with severe and multiple disabilities from research and data systems, what must change - especially in policy - to close these data gaps and make this population visible in ways that drive equitable care, research, and support in the future?

3:19 – 3:33

Question 2 - How are emerging technologies, such as AI-assisted communication and creative modalities like art, music, and movement, expanding autonomy, expression, and connection for people with severe and multiple disabilities, and what are they teaching us about wellness, dignity, and the diverse ways humans communicate?

3:33 – 3:43

Question 3 - What does the future of developing a workforce grounded in person-centered thinking look like - especially for individuals with complex needs or who communicate in nontraditional ways - so that support is delivered consistently and with dignity?

3:43 - 3:47

Questions from the audience and virtually

3:47 – 4:03 Closing Remarks

3:47 – 3:48 Voice Over Introduction of Virginia Governor Abigail Spanberger

3:48 – 4:03

Governor Abigail Spanberger

“The Moral and Economic Case for Inclusion” changes - investing in accessibility, wellness, and full community participation for adults with severe and multiple disabilities isn’t just the right thing to do – it’s smart policy and makes good economic sense.

4:03 – 4:04 – Thanks you for coming – Debi Alexander - Thanks to our sponsors and end with a “Call to Action” on the proposals for change that were presented, which proposals will have been compiled and distributed to the audience upon leaving the auditorium.