National Health Care Transition Resource Center
For Youth and Young Adults with Intellectual and Developmental Disabilities
Got Transition is a program of The National Alliance to Advance Adolescent Health and is funded through a cooperative agreement from HRSA’s Maternal and Child Health Bureau. Its aim is to improve the transition from pediatric to adult health care using innovative strategies for health care professionals and youth/young adults and their families/caregivers. For more health care transition resources and information about Got Transition, visit GotTransition.org.
SPAN Parent Advocacy Network
The Charting the LifeCourse framework evolved within a collaborative process led by the Institute for Human Development at the University of Missouri –Kansas City, a University Center for Excellence (UCEDD) in partnership with many different national and statewide stakeholders. The framework is human-centric, meaning the principles are designed to reflect the needs of people. The key principles were initially developed to drive person-centered change for people with developmental disabilities and their families, but it became clear very quickly that LifeCourse framework and tools applied to everyone and that they could be used to also drive transformational change in practices, organizations, policies, and communities.
Core Leadership Team
Nora Wells is the Executive Director for Family Voices and the Administrative Officer for the ACL Health Care Transition project. Nora has worked with Family Voices since its inception in 1992, leading multiple initiatives, in partnership with professionals, around the design and delivery of family-centered quality health care services.
Nora has most recently served as the Director of Programs and as the Director of the Family Voices National Center for Family/Professional Partnerships (NCFPP) before becoming the Family Voices Executive Director in 2014. Through the years, she has provided extensive training and technical assistance to family leaders and professionals throughout the country; testified in Congress; and collaborated with numerous federal and private agencies, task forces, and national initiatives, providing the family perspective on policy and practice issues.
Nora was the 2015 recipient of the Merle McPherson Leadership Award for her dedication and service. Nora holds a MS Ed degree, and previously worked for the Massachusetts Federation for Children with Special Needs focusing on health and special education; Wheelock College, teaching courses in family professional communication; the Peace Corps, developing international school partnerships; and a U.S. Army Education Center providing educational counseling. Nora brings a deeply personal commitment to our work as the parent of a son with a disability.
Allysa Ware, MSW is the Associate Director of Programs and Strategies with Family Voices and the Primary Investigator for the ACL Transition project.
Allysa has 15 years of experience as an advocate for the needs of CYSHCN, including individuals with ID/DD. As a social worker at the Center for Autism Spectrum Disorders at Children’s National much of her work involved engaging and supporting youth with an autism diagnosis through the transition process, including health care transition.
Currently, Allysa sits on CASD’s Project ECHO hub in the social worker capacity. She has also been the family representative on Got Transition’s Cabinet Executive Team and co-chairs the National HCT Family Advisory Group. In partnership with Got Transition, Allysa has presented at national conferences and to national organizations on the Family HCT Toolkit. Additionally, she is the mother of a 19-year-old African American LGBTQ daughter with an ID/DD and has helped her daughter navigate the HCT process.
Ensuring that youth and families are involved at all stages of the work is a key part of Allysa’s work with Family Voices.
Nikki Montgomery, MA, MEd, GPAC is the Family Voices Project Director for the ACL Health Care Transition Project.
Nikki’s passion for empowering youth and families spans the last two decades, during which she has been a K-12 educator, a healthcare communications director, a patient advocate, and the parent of a 10-year-old son with a rare, complex genetic condition and autism. In addition to a graduate certificate in Patient Advocacy, for which her research was focused on increasing the capacity of parents of medically fragile children, Nikki has a master’s degrees in English and in Educational Psychology, with thesis research on critical thinking and health literacy for parents of children with special health care needs.
Nikki is the author of the Super Safe Kids pediatric patient safety series and currently serves on the Editorial Board for Pediatrics® journal as well as the Global Patient & Family Advisory Board for The Beryl Institute, among many other health advocacy roles. She has served on the Board of Directors and safety committee for Rainbow Babies & Children’s hospital, where she also led the Patient and Family Partnership Council.
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, where she has worked for over 20 years.
Throughout her career she has had the privilege of advocating alongside, and for, people with disabilities and their families. Sheli has served on the President’s Committee for People with Intellectual Disabilities and as the co-director of the National Community of Practice for Supporting Families of Individuals with Intellectual and Developmental Disabilities. 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.
Jane St. John
Jane St. John manages Charting the LifeCourse fidelity and provides content and product development for the LifeCourse Nexus team at the UMKC-Institute for Human Development, UCEDD. She specializes in supporting families, supported decision making, and family leadership and training. Jane was instrumental in the development of the Charting the LifeCourse framework, products, and training. Additionally, she currently serves on the Missouri Guardianship Statutory Reform Task Force, Mo-WINGS, and leads the Missouri Consortium for Supported Decision Making. Jane earned a Bachelor of Arts degree in Psychology from Rockhurst University.
Jane is the parent of three young men. Her son Ben, 31, has an intellectual and developmental disability, and is supported to make his own choices and decisions in his good life. Jane is a strong supporter of community inclusion, working closely in her community to promote inclusive practices.
Peggy McManus, MHS is President of The National Alliance to Advance Adolescent Health, a non-profit organization whose mission is to improve adolescents’ access to comprehensive care and coverage. She is Co-Director of Got Transition, the federally funded national resource center on health care transition.
Since 2013, with Dr. White, she has guided national, DC, and other state transition efforts focused on building the evidence base, ensuring youth and family engagement, implementing evidence-informed transition improvements, improving payment options and managed care provisions, and operating a national transition clearinghouse. She has published extensively on transition as well as on financing and coverage issues affecting children and adolescents. Ms. McManus received her Master’s in Health Sciences from the Johns Hopkins Bloomberg School of Public Health.
Patience White, MD, MA, is the Senior Medical Director at The National Alliance to Advance Adolescent Health and Co-Director of Got Transition. Dr. White is an adult and pediatric rheumatologist and professor emeritus of medicine and pediatrics at the George Washington University School of Medicine and Health Sciences. She is an internationally recognized transition expert and has written numerous articles on the subject, including coauthoring the AAP/AAFP/ACP Clinical Report on Health Care Transition.
In her role at Got Transition, Dr. White leads a large group of integrated care systems in transition quality improvements and provides training and technical assistance to clinicians interested in incorporating the Six Core Elements of Health Care Transition into various systems of care, including primary and specialty care, behavioral health, school health, and care coordination. She previously led the Adolescent Employment Readiness Center at Children’s National Medical Center in Washington, DC. Dr. White received her medical degree from Harvard Medical School before completing a Robert Wood Johnson Health Policy Fellowship and a Master’s in Education from George Washington University Graduate School of Education and Human Development.
Jodi Shorr, MS, is the Administrative Director for The National Alliance to Advance Adolescent Health and is responsible for administrative and financial operations.
With over 15 years of administrative experience, Ms. Shorr recently worked with the Ohio Innocence Project in Cincinnati as the Administrative Director. She received a Master’s of Science degree from Northern Arizona University in Criminology and Criminal Justice and a Bachelors of Sciences degree from Indiana University in Applied Health Sciences.
Carolyn Hayer has been working in the field of advocacy for over thirty years. She is currently the Senior Program Director of National and Regional Projects at SPAN Parent Advocacy Network in New Jersey. As Director of the National Parent Technical Assistance Center, the Center for Parent Information and Resources, Carolyn and her team work to provide information and products to build capacity of the close to 100 Parent Centers across the country who assist and serve families of and youth and young adults with disabilities.
Carolyn has conducted presentations at the local, state and national levels on topics related to health and education advocacy, family-professional partnerships, and family and youth leadership development. She previously served as Co-Director of multiple projects supporting parent centers addressing issues from reaching and supporting underserved families to non-profit management to building capacity to reach, serve, and grow leadership skills of diverse youth and young adults with disabilities as they transition to adulthood.
Dr. Josie Badger received her Bachelor’s degree from Geneva College in Disability Law and Advocacy, a Master’s from the University of Pittsburgh in Rehabilitation Counseling, and a Doctorate from Duquesne University in Healthcare Ethics. In 2012, she was crowned Ms. Wheelchair America. In 2014, Josie founded J Badger Consulting Inc. where she provides youth development and disability consulting services for organizations, on transition and leadership development.
She is the National Transition Director for SPAN Parent Advocacy Network, working with RAISE and the National Healthcare Transition Center for Youth with ID/DD. She is the Campaign Manager of the United Way of Southwestern PA’s #IWantToWork Campaign, to improve the employment of people with disabilities, is the lead Field Organizer for the Family Care Act that supports paid family leave, and is the developer of TRAIL, a statewide advocacy and lobbying training program. She serves as a board member of the United Way of Southwestern Pennsylvania, The Woodlands Foundation, the Mary Grace Hospice Foundation, PA Assistive Technology Foundation, and is the Secretary of FISA and co-chair of the Grants Committee.
With a background in Psychology and Sociology, Rachel Shandler uses her unique skillset to fuel her passion for supporting others. Before obtaining her current role, she was an information and Referralist, Person Centered Counselor, and Peer Support Group Facilitator for The Bucks County Center for Independent Living, which is where she gained valuable experience assisting those with varying disabilities. As someone who has Cerebral Palsy and navigates the world using a motorized wheelchair, Rachel understands first-hand the power of advocacy and the importance of empowerment.
Youth Steering Committee
The National Healthcare Transition Resource Center (NHCTRC) for youth with intellectual and developmental disabilities (ID/DD) will:
- Provide healthcare transition training and resources to youth and young adults with ID/DD, ages 12-26, their families, and the professionals who serve them.
- Be a person-centered, culturally responsive resource center to empower youth with intellectual and developmental disabilities (ID/DD) in directing their own healthcare
The Youth Steering Committee tells the Center what youth need to transition their healthcare. This group of 8-10 young adults with intellectual and developmental disabilities make sure the project is youth driven. The Youth Steering Committee members learn new skills, share ideas, and make decisions about a website, app, and tools for youth, families, and professionals.
National Community of Practice
Associate Director, UCCEDD, Division of Developmental and Behavioral Pediatrics
Assistant Professor, University of Cincinnati Department of Pediatrics
Leigh Ann Davis
Director, Criminal Justice Initiatives
The Arc of the United States
Leann Smith Dawalt
Director, University Center for Excellence In Developmental Disabilities
National Black Disability Coalition
National Federation of Families for Children’s Mental Health
Allison Cohen Hall
Senior Research Associate
Institute for Community Inclusion at the University of Massachusetts
Center for Autism Services and Transition (CAST)
Professor of Internal Medicine, Pediatrics and Health Policy
University of California, San Francisco
Parent to Parent USA