Tip Sheets and Toolkits
Parents tell us...
"It is not so much knowing everything, as it is knowing, where to find information and how to keep it organized. Tip sheets and toolkits help make life work."
"There are so many smart parents out there! I am glad they are willing to share their tips."
Almost every one of the resources on this page was written by parents of children with special physical, developmental, or behavioral health needs. There is a lot of wisdom here, but remember that you must always do your own research. What worked for someone else may not work for you.
Tip sheets and toolkits
Don't see what you are looking for here? Contact us.
Family life and safety
After the Injury (medical trauma)
Caregivers of Children with Rare and/or Serious Illnesses
Coping with a Child's Death or Life Limiting Illness
Disaster Preparedness for Families of Children with Special Health Needs
Foster Care and Disability: A Toolkit for Resource Parents
Funding Resources that Include Fun!
Generations United, Grand Resources
Planning for Health Emergencies Toolkit
Tools for keeping organized
Moving from pediatric to adult healthcare
Adult Health Care Transition Guidelines
Condition Specific Transition to Adult Healthcare Toolkits
- Intellectual/Developmental Disabilities
- Physical Disabilities
- Congenital Heart Disease
- Type 1 Diabetes
- Turner Syndrome
- Growth Hormone Deficiency
- General Hematology
- Sickle Cell Disease
- Hemophilia
- End Stage Renal Disease
- Young Adults with Neurologic Disorders
- Juvenile Idiopathic Arthritis
- Systemic Lupus Erythematosus
- Duchenne Muscular Dystrophy
Five Questions to Ask Your Provider about Transition
Transition to Adult Healthcare Guide
Transition to Adult Healthcare Planning Checklist
Transition to Adult Healthcare Booklet
Other transition topics
Vanderbilt Healthy Bodies Guidebooks
Family-professional communication
11 Tips to Make the Best of Your Dr. Appointment (ASD)
Five Questions to ask your Provider about Transition
GEMSS Genetic Education Materials for School Success toolkits by condition
Planning for Health Emergencies Toolkit
Patient-Centered Primary Care Homes
Steps to Success: Communicating Well With Your Child's School
Specific conditions
Autism Speaks: Behavior Toolkits
Birth Anomalies Resources/Tip Sheets
The Cerebral Palsy Toolkit: From Diagnosis to Understanding CP NOW
Diabetes type 1: Informational guides
Down Syndrome: New parent guide
Eating Disorders: Parent toolkit
Facts for Families: Social Emotional Health
Meeting medical challenges
A Parent's Introduction to Tube Feeding
Caregivers of Children with Rare and/or Serious Illnesses
Compassionate allowance list SSI
Coping with a Child's Death or Life-Limiting Illness
Exceptional Needs Care Coordinator
For Parents Considering Residential Care (Mental Health)
Disclaimer
This list of resources is not exhaustive. Inclusion of resources on our site does not imply endorsement nor does exclusion mean we do not think it is valuable.