National Health Care Transition Resource Center
For Youth and Young Adults with Intellectual and Developmental Disabilities

Logos of Family Voices, Got Transition, UMKC Institute for Human Development, and Span Parent Advocacy Network.

Got Transition

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.

Got Transition Logo

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 spanadvocacy.org.
SPAN Parent Advocacy Network Logo.

UMKC

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.

UMKC Institute for Human Development Logo.

The Waisman Center

The Waisman Center is a multidisciplinary center at the University of Wisconsin-Madison that includes a University Center for Excellence in Developmental Disabilities (UCEDD) and an Intellectual and Developmental Disabilities Research Center. We are dedicated to advancing knowledge about human development, developmental disabilities, and neurodegenerative diseases through research, training, services, and outreach. The UCEDD at the Waisman Center leads the Wisconsin Youth Health Transition Initiative and the Wisconsin Integrated Transition Planning Project. For this project we will develop and implement a Project ECHO training for multidisciplinary clinicians on health care transition. For more information visit: waisman.wisc.edu/echo/health-care-transition.

Core Leadership Team

Nikki Montgomery

Headshot of Nikki Montgomery.

Nikki Montgomery, MA, MEd, GPAC is the Family Voices Director of Communications and 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

Headshot of Sheli Reynolds.
UMKC Institute for Human Development Logo.

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

Headshot of Jane St. John.
UMKC Institute for Human Development Logo.

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

Headshot of Peggy McManus
UMKC Institute for Human Development Logo.

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

Headshot of Patience White.
UMKC Institute for Human Development Logo.

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

UMKC Institute for Human Development Logo.

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.

Josie Badger

Headshot of Josie Badger.
SPAN Parent Advocacy Network Logo.

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

Headshot of Rachel Shandler.
SPAN Parent Advocacy Network Logo.

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

Kara Ayers

Headshot of Kara Ayers.

Associate Director, UCCEDD, Division of Developmental and Behavioral Pediatrics

Assistant Professor, University of Cincinnati  Department of Pediatrics

Leigh Ann Davis

Headshot of Leigh Ann Davis.

Director, Criminal Justice Initiatives
The Arc of the United States

Leann Smith Dawalt

Headshot of Leann Smith Dawalt.

Director, University Center for Excellence In Developmental Disabilities
Waisman Center

Jane Dunhamn

Headshot of Jane Dunhamn.

Director
National Black Disability Coalition

Lynda Gargan

Headshot of Lynda Gargan.

Executive Director
National Federation of Families for Children’s Mental Health

Allison Cohen Hall

Headshot of Allison Cohen Hall.

Senior Research Associate
Institute for Community Inclusion at the University of Massachusetts

Chris Hanks

Headshot of Chris Hanks.

Medical Director
Center for Autism Services and Transition (CAST)

Megumi Okumura

Headshot of Megumi Okumura.

Professor of Internal Medicine,  Pediatrics and Health Policy
University of California, San Francisco

Marsha Quinn

Headshot of Marsha Quinn.

Co-Executive Director
Parent to Parent USA

Complete your gift to help keep families at the center of children’s health care

I'm ready
Not today

Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

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 health care services and policies for children.

In honor of