The Center for Transition to Adult Health Care for Youth with Disabilities is a national health care transition (HCT) resource center. The goal of the center is to empower youth and young adults with intellectual and developmental disabilities (ID/DD) ages 12-26 to direct their own transition from pediatric to adult care with no reduction in quality of care of gaps in service.
Family Voices leads this project, in partnership with Got Transition, SPAN NJ, University of Missouri Kansas City, and the Waisman Center, as part of a five-year contract from The Department of Health and Human Services, Administration for Community Living.
Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families–including those of cultural, linguistic and geographic diversity—in order to improve healthcare services and policies for children. For more information, visit www.familyvoices.org.
Got Transition is the national resource center on health care transition. It is a program of The National Alliance to Advance Adolescent Health. 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 www.GotTransition.org.
SPAN Parent Advocacy Network
For over 30 years, SPAN Parent Advocacy Network has been providing information, resources, support, and advocacy assistance to families, professionals, policy makers, and our Parent Center Colleagues. Our foremost commitment is to children and families with the greatest need due to disability or special health/mental health needs; poverty; discrimination based on race/ethnicity, gender, gender identity, sexual orientation, language, immigrant or homeless status; involvement in the child welfare or juvenile justice systems; geographic location; or other special circumstances. For more about SPAN visit www.spanadvocacy.org.
University of Missouri Kansas City – Institute for Human Development, UCEDD
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. For more information, visit ihd.umkc.edu.
Alyssa Ware, Family Voices
Allysa Ware, PhD, MSW, is the new Executive Director of Family Voices. She is a family leader and researcher with extensive experience in strategic planning, family engagement, grant writing, human relations, and systems change, and she believes strongly in family and community leadership in developing solutions and improving systems.
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, 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 Reynolds, UMKC Institute for Human Development
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, UMKC Institute for Human Development
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, Got Transition
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 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, Got Transition
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.
Dawn Monaco, SPAN Parent Advocacy Network
Dawn Monaco has been working with families, in the area of special education advocacy, for over 13 years. Dawn is currently Project Director for the REAL Transition Partners project, a technical assistance coach specializing in transition for 26 Region A parent centers, and a senior Parent/Professional Staff Trainer. SPAN is a nonprofit organization whose mission is to educate and empower families as well as to inform and involve professionals and other individuals interested in the healthy development and educational rights of children. Dawn has conducted trainings educating parents, youth, and professionals on such topics related to special education, transition to adult life, self advocacy, and supported decision-making. Dawn is an advisory member of a National Coalition board for the Center on Youth Voice Youth Choice. A board member for the ARC of Bergen and Passaic counties and a member of the Bergen County Children’s Interagency Coordinating Council [CIACC]. She had also been involved locally as a Board of Education trustee for 12 years.
Josie Badger, SPAN Parent Advocacy Network
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.
Rachel Shandler, SPAN Parent Advocacy Network
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.
Associate Director, UCEDD, 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, UCEDD, Waisman Center
Director, National Black Disability Coalition
Executive Director, National Federation of Families for Children’s Mental Health
Allison Cohen Hall
Senior Research Associate, Institute for Community Inclusion at the University of Massachusetts
Medical Director, Center for Autism Services and Transition (CAST)
Professor of Internal Medicine, Pediatrics and Health Policy, University of California, San Francisco
Co-Executive Director, Parent to Parent USA