The TOTS Project
Tiered Online Training and Support (TOTS)
We create research-driven tools for parents of young children with developmental delay or disability.Join Our Community!
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Parents spoke. We listened.
Parenting any preschooler is tough. Parenting a preschool aged child with a developmental delay or disability has some unique challenges.
Parents want tools that are effective and that promote positive outcomes for kids – and for the whole family.
TOTS meets parents where they are, providing tailored training and supports as needed.
The TOTS program
- Helps you understand your child's difficult behaviors, so you can learn how to reduce them
- Teaches you to engage with your individual child, improving connection within your family
- Offers strategies to help your child learn new skills
- Provides families with access to information tailored to their family needs
TOTS provides tiered support tailored to parent needs.
TIERED supports get more comprehensive as parents report what their child and family needs.
ONLINE content is delivered in short, engaging, modules that fit into your day.
TRAINING is based on evidence of what practices really work.
SUPPORT is designed to address what parents really need.
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Tier 1:
We teach strategies to improve the most common behavior problems -- like tantrums, bedtime struggles, and picky eating.
These strategies really work! TOTS is based on scientific evidence of best parenting practices that promote positive parent and child outcomes.
Our parenting expert, special-education researcher Laura Lee McIntyre, has spent years adapting these practices for parents of children with developmental delay or disability. TOTS is now developing this important training to be delivered entirely online!
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Tier 2:
Sometimes a personal touch is needed for families to work through tougher problems.
TOTS has built-in personal coach-supported training and teaches positive coping skills to reduce stress.
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Tier 3:
When more extensive supports are needed, coaches provide individualized referrals to local specialists.
Assessments are embedded within the online program to identify the supports best suited to each family.
Recruitment
The TOTS Project successfully recruited 280 participants from 19 states. Thank you to our recruitment partners for helping make TOTS a success!
Publications
The TOTS Project has published three papers so far and we are currently working on more. Check this space for updates.
TOTS Parent Focus Groups 2022
In our first published paper from the TOTS Project, we interviewed parents of children with intellectual and developmental disabilities (IDD) to understand how they use internet resources to learn about their child’s condition. These perspectives helped us design the TOTS program and can help other researchers and organizations. Parents take an active approach to learning about their child’s condition. They described using the internet to find information from reliable sources about diagnosis, treatment, and resources. They also described wanting to learn from other parents online about their experiences and seeking to learn from parents in similar situations.
TOTS Provider COVID Interviews 2022
When the COVID-19 pandemic struck in the middle of our project, we conducted interviews with Early Childhood Special Education providers to learn how services had changed. We wanted to hear their personal and professional perspectives on how the COVID-19 pandemic changed their work. Service providers described challenges as well as unexpected positive outcomes. They expressed worry for the mental and physical health and well-being of themselves, their loved ones, and their clients. Providers reported stress and uncertainty about how policies and procedures would change as the pandemic continued. Some providers expressed that virtual delivery could be more difficult for both themselves and their clients. However, other providers reported that remote service delivery made it easier for some families to engage in services by increasing access to services, allowing providers to observe their clients in their natural home environment and re-centered the parent as the primary model for their child’s skill development.
TOTS Parent COVID Interviews 2023
To understand how the COVID-19 Pandemic was impacting our research, we interviewed parents of children with intellectual and developmental disabilities. How does a high-stress event like COVID-19 impact family life and receiving services? Parents reported both negative and positive experiences. Negative experiences included abrupt changes in their day-to-day lives, delays to early intervention services, and loss of essential supports like social support networks, access to respite care, and loss of financial stability. Positive experiences included additional online resources that were previously not available and reduced stress around commuting to appointments. Parents also described strengthened home routines which led to decreased child anxiety and increased child progress in skill development. These parent perspectives provide valuable insights on improving access to services, reducing disparities, and improving family supports in schools and communities.
Resources
Ann Glang
Ann Glang, PhD, is a Research Professor and Director of CBIRT. Since 1987, she has secured and directed or co-directed over 30 federally funded research projects focused on individuals with TBI, including both descriptive and intervention research projects. Her research interests include strategies and supports in the school setting for children and adolescents with brain injuries, teacher training and childhood brain injury prevention. She has published numerous articles in refereed journals, edited two books on her work with children with TBI, and co-authored five manuals for educators serving children with TBI. Dr. Glang was awarded the 2011 Researcher of the Year award by the North American Brain Injury Society. Dr. Glang has also led the development of a range of SBIR-funded health education programs, including Brain 101, a concussion education and management program for high schools.
Laura Lee McIntyre
Laura Lee McIntyre is Department Head of Special Education and Clinical Sciences and Professor of School Psychology. Her research interests include autism; early identification and treatment of young children with or at-risk for developmental and behavior disorders; transition to kindergarten; family well-being; and parent-professional partnerships. McIntyre is a Board Certified Behavior Analyst (BCBA), certified school psychologist, and board licensed psychologist. She has professional experiences in both school and hospital settings. Prior to joining the faculty at the University of Oregon, Laura Lee McIntyre was a faculty member in the Psychology Department at Syracuse University and an affiliated faculty member in the Center for Development, Behavior, and Genetics in the Department of Pediatrics at SUNY Upstate Medical University. She has been at UO since 2009.
Christina Karns
Christina Karns, Ph.D., received her doctorate in Neuroscience from the University of California, Berkeley. At the University of Oregon, she has directed neuroimaging projects with children, teens, and adults with and without disability to clarify how attention and self-regulation support healthy neural development. This work has provided foundation for evidence-based interventions that utilize the neuroplasticity of emotions and cognition to support people in positive and healthy interactions with society and each other.
Laura Beck
Laura has worked at CBIRT since 1999 on a variety of information management, educational research, and service-related projects. She has an MLIS from the University of Missouri. Laura provides comprehensive reference and information management services to Principal Investigators (PIs) and project staff as well as day-to-day management of the organization’s research compliance activities, web presence, and social media sites.
Jody Slocumb
Jody Slocumb received her BA in Journalism and Communication from the University of Oregon. She had eight years of experience on a wide range of social science research projects before coming to CBIRT in 2013. Jody has primary responsibility for data management and subject recruitment. She also coordinates program development activities, assessment, helps maintain contact with all research partners and assists with dissemination activities.
Dane Ramshaw
Coming soon.
Ilka Riddle
As the director of the University of Cincinnati University Center for Excellence in Developmental Disabilities (UC UCEDD), Ilka Riddle, PhD, is responsible for achieving the four core functions of a UCEDD: interdisciplinary training, community services and collaborations, research and information dissemination. UC UCEDD achieves its goals through the Leadership Education in Neurodevelopmental and Other Disabilities (LEND) interdisciplinary training program; community partnerships on self-advocacy, transition, employment, housing and healthy living; research on transition and sharing of disability and other relevant information with individuals with disabilities, family members, caregivers, health care providers, state and community agencies staff, policy makers and legislators. Dr. Riddle participates on a variety of state advisory and task forces to provide technical assistance on disability, conducts research on health care transition, engages with the national Association of University Centers on Disabilities (AUCD) on disability-relevant topics and works with local, regional and state partners on a variety of initiatives to improve community integration and inclusion of people with disabilities.
Kandyce Kelley
Kandyce Kelley received her BS in Psychology from the University of Oregon. She has worked in cognitive neuroscience, developmental psychology, and early childhood intervention research for 8 years and is currently coordinating the development of the TOTS Project at CBIRT.
Megan Jones
Megan received her BA in Psychology from Willamette University. Prior to coming to CBIRT she spent 8 years researching early childhood development with at-risk families. She currently brings her organization, coordination, and logistic expertise to many projects at CBIRT.
Megan Kunze
Dr. Kunze has been certified as a behavior analyst for 16 years and currently holds the highest certification level: BCBA-D. She has worked to support children, families, and specialists in early education for over 25 years. Dr. Kunze has been a director early intervention center, a therapeutic clinic, and a self-contained school for children with autism, intellectual and developmental disabilities. She has been a consultant for preschools and Head Start Programs throughout southwest Texas providing training on various topics to include developmental differences, behavioral interventions, and strengthening classroom communities. Dr. Kunze has worked in military childcare as a center director, training and curriculum specialist, and preschool teacher supporting overseas families in Europe. One of her favorite professional positions is that of an interdisciplinary diagnostic team-member, where she conducted assessments with young children demonstrating red-flags for autism as a Research Reliable Administrator of the Autism Diagnostic Observation Schedule-2 and Certified Administrator of the Screening Tool for Autism in Toddlers and Young Children. Dr. Kunze's research concentration includes accessibility and impact of early diagnosis, professional preparation in Applied Behavior Analysis, and coaching of family-focused naturalistic interventions to best support young children with developmental delays.
Liz Glenn
Liz Glenn is a PhD candidate in School Psychology at the University of Oregon. Her main research interests include the utilization of technology to expand access to evidence-based practices and links between parenting and child and parental emotional wellbeing. Before joining the TOTs team, she served as a research assistant and research coordinator on multiple studies pertaining to promoting outcomes for children and families with developmental disabilities, including Autism Spectrum Disorder. She has also served as a clinician in school and community settings, providing individual, group, and family therapy to parents and children with developmental, academic, and mental health needs.
TOTS Advisory Board
We need a range of diverse voices for this important project to be successful.
This is why parents, self-advocates, and service providers are helping us develop this program by serving on our 21 member project Advisory Board. Members in Oregon and Ohio meet quarterly throughout the first two years of development to provide feedback on emerging themes.
Their input will shape our program and help families with young children with developmental delays.
Ohio
- Amy KingProfessional
- Annah KorpiParent
- Brittany GerberParent
- Crystal DaffnerParent
- Marty EckesSelf-advocate
- Megan Stone-HeaberlinProfessional
- Felicia BernhardProfessional
- Brittany SuarezProfessional
Oregon
- Alexis ReedParent
- Blake HodgettsParent
- Chelsea ClintonParent
- Emily QuinnProfessional
- Florien DeurlooProfessional
- Judy NewmanProfessional
- Maureen DeLongisProfessional
- Tambrea AguasSelf-advocate
- Tyler WoodProfessional
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