SLIDE 1: Lived Experience Leading the Way Catchy subtitle here July 25, 2024 NCIL Annual Conference SLIDE 2: UnitedHealthcare National Advisory Board SLIDE 3: National Advisory Board In 2012, UnitedHealthcare Community and State formed an advisory board to serve as an independent advisory council to provide input in actively engaging members, providers, advocacy groups, and other key stakeholders in the design and delivery system that supports individuals with special health care needs. The National Advisory Board makes recommendations, develops and champions innovations, and advises on member engagement strategies that support clinical approaches. The goals of the National Advisory Board are to: Cultivate a consumer-centered culture Advance awareness and knowledge of individuals served Identify emerging trends or policy issues Create a pathway to enable policy advancements Develop and recommend innovations for populations with special health care needs SLIDE 4: Journey as a Self-Advocate and Impact of NAB SLIDE 5: My Journey to Becoming a Disability Advocate by Jennifer Kucera Reason for my advocacy success is due to United Healthcare’s inspiration Helped find public voice Exposed to different avenues to tell “my story” and build knowledge base Validating my experiences Sponsorships (conferences) Alt text: Five images in a collage format. A white paper with a black line floral drawing. A drawing of a flower and leaves. A picture of Jennifer - a white woman with a ponytail in her hair sitting in her power wheel chair. A picture of Miley - a small tan dog with pointy ears, black eyes and nose standing on a chair. Miley, the dog sitting on Jennifer's lap. SLIDE 6: How My Disability Systems Advocacy Began 2018. Meeting of Melvin Harris, Heather Cianfrocco, and Steve Nelson in Dublin Oh United Health Care of Ohio’s Open House Guest Speaker Math Instructor at Elevate K-12 State ID, Ohio Opportunities for Ohioans with Disabilities (OOD) introduction Amy Swanson’s recommendation to the National Advisory Board Aug 2019 NAB Phone interview with Catherine Anderson Nov 2019 first NAB Meeting 2019 turned 50. Life turned into dream, Advocacy full time 2019: Member Perspective Video - Online Credibility and Validation, LinkedIn page, networking Heather Cianfrocco & Jen Kucera Alt text: Jennifer, sitting in her power wheelchair, talking with a blonde, white woman, sitting in an office chair in front of cubicles. A picture of a black line drawing of flowers and leaves SLIDE 7: Beginning of all Conferences National Advocacy MHPA opening session with Catherine Anderson, 2021 Speaking at MHPA was amazing experience HCBS Conference and dancing for 1st time, 2021 Independent Living discussion, 4/2/21 Ohio UHC meeting Disability Policy Seminar, 2022 National Council of Independent Living, NCIL Conference, 2022 HCBS Conference, 2022 Community Health Institute Conference, Chicago, 2022 NAB Quarterly Meetings, 2019 – Present Caring Across Generations fellowship, 2022 Advancing States Adaptive Fashion Show, 2023 Advancing States ARPA Summit, 2023 NACDD Conference presenter 2023, Self-Direction Self Direction Conference presenter, 2024 IEC work, beginning in 2023 NCOA Direct Care Workforce Strategies Center, DCW Advisory Committee, 2023 Alt text: Four images of Jennifer at various conferences and events. SLIDE 8: 1st HCBS Conference! 2021 2nd HCBS Conference 2022 Dancing for the First time Alt text: two images of Jennifer dancing and a third photo of Jennifer and a woman posing for a photo SLIDE 9: Current State Advocacy Involvement Today’s advocacy: Ohio Olmstead Task Force, 2022 Chair of the Taskforce Celebrate Our Carers Event – Ohio Statehouse Legislative Day – Ohio Statehouse Legislative Committee, DCW workgroup Steering Committee Housing Advocacy Workgroup Co-Host for Breaking Silences Advocacy Group MyCare-Ohio Waiver Committee Self-Direction Committee DD Council Chair, November 2023 Public Policy Committee Ohio Department of Health (ODH) Emergency Preparedness Planning for PWD, Apr 2022 Focus on Self-Direction, MyCare and Direct Care Crisis! Alt text: Five images in a collage format. A group of advocates in wheelchairs at an event at Ohio's Statehouse, A person in a wheelchair being interviewed by a news reporter at Ohio's Statehouse, Ohio Olmstead Task Force logo, Breaking Silences logo, State of Ohio historical document. SLIDE 10: Artwork Showing of “Love”, Toledo Art Museum 2022 Alt text: three images of artwork: two drawings of flowers, one drawing of the word Love. Two images of the art museum showing. SLIDE 11: Edward Mitchell FPPT.com SLIDE 12: Edward Mitchell Alt text: four images. A group of people standing around a firepit, a "help solve this crime" flyer, Edward at college graduation, a group of people smiling at the camera. The SILC Tennessee logo. SLIDE 13: Who is Edward? Alt text: Six images of Edward at various events. SLIDE 14: Why the work of the NAB is important. Alt text: Four pictures of Edward at various professional engagements. SLIDE 15: What gets me out of bed in the morning. “Supporting Economic Stability and Self-Sufficiency as Americans with Disabilities and their Families Age” What gets me out of bed in the morning.  Alt text: Five images of Edward at various professional engagements. One image of class rings. SLIDE 16: Ways to improve access to and opportunity for self-direction. Alt text: two magazine covers and one image of Edward giving a speech. SLIDE 17: Theo W. Braddy Executive Director National Council on Independent Living Alt text: Picture of Theo Braddy, a black man with blue glasses in front of a white background. SLIDE 18: Theo W. Braddy Theo W. Braddy has advocated on behalf of people with disabilities for over 40 years. At the age of 15, he became a person with a disability due to a high school football accident that left him paralyzed from the neck down. In 1988 he was hired as CEO of the Center for Independent Living of Central PA, where he served for over 30 years. As CEO, he created a CIL that became a strong and growing voice for people with disabilities, and started the Living Well with a Disability Initiative. Alt text: three images of Theo Braddy with other individuals. SLIDE 19: National Disability Advocacy He currently serves as Executive Director of the National Council on Independent Living (NCIL). He has received appointments from Governors, recognition from U.S. Senators and state and federal policymakers as a disability advocate and leader. In 2023 he joined the UHC National Advisory Board. Alt text: Four images of Theo at various speaking engagements. SLIDE 20: National Advisory Board Work to Date SLIDE 21: Partnership with Association of Clinicians for the Underserved Caregiver Webinar Series Facilitated Lunch & Learns for Providers Content developed with NAB feedback. Understanding Caregiver Roles, Responsibilities and the Workforce Landscape Caregivers as a Window into the Living Environment Trainings for all clinic staff Featuring clinical subject matter experts and individuals with lived experience. Equity, Unconscious Bias, and Other Critical Considerations When Working with Healthcare Consumers and Their Caregivers Caregivers as an Ally for Emotional Support Other resources that can support clinics Getting the Conversation Started: Engaging Consumers and their Caregivers and the Legal and Ethical Implications Communication and Conflict Resolution for Working With Caregivers and Consumers SLIDE 22: Championing Self-Advocacy Celebrating Self-advocacy during Disability Pride Month Empowered to speak up: the value of childhood self-advocacy Self-Advocacy in Adulthood Self-Advocacy in Older Adulthood Recognizing Developmental Disability Awareness Month Videos and blogs released throughout 2023 – 2024 SLIDE 23: UnitedHealthcare Disability Taxonomy Goal: Develop data structures to facilitate identifying populations that experience disparate health outcomes to inform interventions to improve the quality of care those populations receive. Information not used in benefit decisions Prioritized information directly from the individual Collected information needed to serve the person Implementing a disability methodology allows additional outreach to individuals most likely living with a disability to be deployed and enables investigation into: How best they can be assisted on their health journey. Disparities and inform interventions to alleviate those disparities. Supporting Caregivers Partnership to develop a curriculum to provide training to new caregivers of people who self-direct Curriculum development on track to be completed by the end of 2024 Additional National Advisory Initiatives Addressing Elder Abuse Culture of Access Maximizing Stakeholder Engagement SLIDE 24: Continuing Efforts National Strategy on Self-Direction for UHC Providing guidance on the development of policy papers and research. Assisting in the execution of market-level summits with stakeholders and state policy leaders. Guiding UHC’s review of operational practices to increase utilization of self-direction. Providing Ongoing Strategic Direction to UHC Staff continuing education courses on disability. Guiding new partnerships with disability stakeholders. Operational policy review and updates in response to feedback from board. Providing Ongoing Strategic Direction to UHC SLIDE 25: National Advisory Board Impact on Members SLIDE 26: Board member engagement at Conferences Board members have presented about their work to influence UHC at national and local conferences, highlighting the power of advocacy with Medicaid health plans. Advocacy Leadership Future and emerging leaders have connected through the work of the Advisory Board, growing the pipeline of disability advocates engaged with UHC. Best Practice in Medicaid UHC is a leader in Medicaid Managed Care and having disability leaders advising plans that serve them is a best practice that should be replicated. “Nothing About Us without Us!” Personal Impact to Board Members Involvement with NAB has impacted individual advocacy. SLIDE 27: Applying Advocacy Lessons Locally SLIDE 28: Shaping Medicaid Managed Care through Advocacy Medicaid Managed Care plans that cover LTSS must have Member Advisory Committees (MAC) D-SNPs must also have Enrollee Advisory Committees MACs are a key stakeholder engagement strategy for gaining meaningful member perspective, identifying opportunities to improve, and reporting action steps from their previous insights Members of Medicaid Plans can advocate for change through MAC engagement People with lived experience have an important perspective that must be heard and prioritized on MACs MACs are just one format to collect member insights. Plans may also have provider advisory committees, stakeholder engagement committees or community advisory committees that target and engage key voices that can inform, influence and shape plan decisions. Plans will also conduct member surveys and other tactics to gather member input. State Medicaid Agencies must also have MACs SLIDE 29: Discussion