AUCD 2024 Conference
November 3-6 | Washington, D.C.
November 3-6 | Washington, D.C.
Creating a More Inclusive World Through Family Leadership and Engagement
Tuesday, November 5, 2024
8:30 am - 10:00 am
Family support is a critical component in creating a more inclusive world for people with disabilities and their families. Join us for an insightful session where we will hear from committed leaders in family support research, engagement, advocacy and education and explore the critical role of each in improving systems of care and support for families.
This session will feature research and initiatives happening both within and in partnership with the AUCD Network around family support, highlighting the importance of a well-trained workforce, supporting professionals who support families, family experiences driving family support research, and more.
Key Topics:
Nikki Montgomery, MA, MEd, GPAC is the Director of Strategy and Communications for Family Voices. Nikki’s passion for empowering youth and families spans the last two decades, during which she has been an educator, a health literacy specialist, and a patient advocate. Nikki identifies as neurodivergent and is the parent of a child with autism, complex health care needs, and a rare and disabling genetic condition which her late sister also had (RYR-1 congenital fiber-type disproportion myopathy).
In addition to a graduate certificate in Patient Advocacy, for which her research was focused on increasing engagement and safety for parents of medically complex children, Nikki has master’s degrees in English and in Educational Psychology, with thesis research on health literacy and critical thinking and health literacy for parents of medically complex children. She is the author of the Super Safe Kids pediatric patient safety books and two books for caregivers of children with special health care needs. Nikki currently serves on the Patient Engagement Advisory Panel for the Patient Centered Outcomes Research Institute (PCORI); the Board of Directors for The Superhero Project; and the Patient Experience Policy Forum and Global Patient and Family Advisory Boards for The Beryl Institute, and many other health advocacy roles.
Alan Cobo-Lewis is associate professor of psychology at the University of Maine and director of the UMaine Center for Community Inclusion and Disability Studies, where he also serves as research director. Alan previously trained at the Mailman Center in Miami and the Waisman Center in Wisconsin. His current academic and policy focus is on evidence-based Home and Community Based Services rooted in human rights, quality inclusive early care and education, Autism CARES, and SSI reform. He believes in data, and he believes in justice.
Sheli is the key developer of the Charting the LifeCourse framework and tools and provides overall direction to the LifeCourse Nexus. Her passion, knowledge, and experience comes from growing up as a sibling of a brother with developmental disabilities.
She is committed to research, demonstrations and implementation of evidence-based practices that enhance person- and family-centered organizational, policy and systems change. She currently serves as the Associate Director at UMKC Institute for Human Development, Missouri’s UCEDD, where she has worked for over 25 years and is a Research Associate Professor with the UMKC School of Medicine. She is committed to being and ally and advocating alongside people with disabilities and their families. Sheli is an AAIDD Fellow and serves as the chair for the AAIDD Family Interest Network. She is honored to have served on the President’s Committee for People with Intellectual Disabilities under the Obama administration. She has her masters in Occupational Therapy from Rockhurst University and earned her doctorate in Public Administration and Sociology from the University of Missouri, Kansas City with a focus on family support research and policy for families of individuals with disabilities across the lifespan.
Wanda P. Felty is the Assistant Director at the Center for Learning and Leadership, Oklahoma’s UCEDD and Core Faculty Mentor for the OK LEND program. Wanda has been a professional in the field of family advocacy and systems change for more than 20 years. She serves on many state boards and works nationally to improve the system and services for people with developmental disabilities and their families. She has spoken nationally and internationally on topics of family professional partnerships and involving those with lived experience in the educational teaching process. Wanda is considered one of the leading experts in Oklahoma on state policy for people with developmental disabilities.
Donna Morgan Johnson, MHS serves as a project officer for Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB) in the Division of Services for Children with Special Health Needs. She is the program lead for transition, autism, and epilepsy. She also serves as a project officer for the Family-to-Family Health Information Center (F2F) program. Donna has served as the Director for several state-wide programs in Georgia including Family Support for childcare subsidy, Child Health, Title V Children and Youth with Special Health Care Needs, and the Part C of IDEA Early Intervention program at Georgia Department of Public Health. Donna served as the coordinator and co-author for the Autism Plan for Georgia while working at the Center for Leadership in Disability, a University Center for Excellence in Developmental Disabilities (UCEDD) at Georgia State University. She later used the Autism Plan for Georgia to guide and develop the autism strategic plan for the Georgia Department of Public Health.
Donna has served on several committees as the parent/caregiver representative, including the Developmental-Behavioral Pediatrics Network (DBPNet) and the Council on Children with Disabilities Autism Subcommittee for the American Academy of Pediatrics. In these roles she ensured that the lived experience of a parent/caregiver was incorporated in publications she reviewed and co-authored, such as Caring for Children with Autism Spectrum Disorder: A Practical Resource Toolkit for Clinicians, 3rd edition and Identifying and Caring for Children with Autism Spectrum Disorder: A Course for Pediatric Clinicians Continuing Medical Education (CME) and Maintenance of Certification (MOC). Donna was a family trainee in the inaugural cohort for the Georgia Leadership Education in Neurodevelopmental and Related Disabilities (GaLEND) program and later served as Family Faculty. She is the mother of and supports three adult children, which includes a daughter who lives with a chronic health condition and autistic twin daughters.
