Tip Sheets and Toolkits
Tools you can use to help you with:
- Emergency preparedness for your family's special needs
- Family-professional communication and family advocacy
- Meeting medical challenges-learning to care for your child
- Paying for medical expenses
- Planning for the move from pediatric to adult healthcare
- Supporting your child's growth to adulthood
- Staying organized
- Specific conditions
- Supporting your family's life and safety
These are all free to print and share and were developed for families and the professionals who work with them. If you have ideas for updates or topics that you would like to see please let us know contact@oregonfamilytofamily.org
Tools you can use to support your family's best life
What you can find here
We have created and collected a number of family friendly tip sheets and toolkits to help you with:
- Emergency preparedness resources and checklists for both medical emergencies and disaster preparedness.
- Tools you can use to help you organize your thoughts and prepare for meetings and advocacy situations.
- Guides for taking care of different medical challenges like tube feeding or organ transplants and for specific conditions like Down syndrome.
- Tools you can use to prepare yourself and your child to take charge of their own healthcare or to learn to be more independent as they get older.
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Emergency preparedness resources and checklists
Caring for your medically complex child at home
Family Support Chart for Hospitalizations
Oregon Natural Disasters Emergency Preparedness Resources and Strategies for Families
Planning for Health Emergencies Toolkit
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Tools to help you communicate your child's needs to professionals
11 Tips to Make the Best of Your Dr. Appointment (ASD)
Five Questions to ask your Provider about Moving to Adult Healthcare
Planning for Health Emergencies Toolkit
Patient-Centered Primary Care Homes
Steps to Success: Communicating Well With Your Child's School
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Finding support and our tips for specific medical challenges
A Parent's Introduction to Tube Feeding
Caregivers of Children with Rare and/or Serious Illnesses
Caring for Your Medically Complex Child at Home
Compassionate allowance list SSI
Coping with a Child's Death or Life-Limiting Illness
Exceptional Needs Care Coordinator
Family Support Chart for Hospitalizations
For Parents Considering Residential Care (Mental Health)
Moving with Special Health Needs Checklist
Planning for Health Emergencies Toolkit
Problem Tracking Sheet fillable
Problem Tracking Sheet printable
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Moving to adult healthcare
Moving to Adult Health Care Guidelines
Condition Specific Moving 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 Moving to Adult Healthcare
Moving to Adult Healthcare Guide
Other preparing for adulthood tools. Life is more than medical care.
Vanderbilt Healthy Bodies Guidebooks
More tip sheets and toolkits
Here you will find resources to help with:
- How to get and pay for the items and services that your child needs to thrive, with or without insurance or developmental disability services' help.
- Getting and keeping, yourself and your child organized. There is soo much to keep track of and soo many people involved in your child's life.
- Tools that help your family have their best life where all members of the family get their needs met and are able to thrive. Learn about service dogs, grandparents caring for grandchildren, life limiting illnesses and more.
- Guides for specific health or developmental conditions
- Materiales de familia a familia (OR F2F HIC tip sheets and toolkits in Spanish))
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Tools for keeping organized
Caring for Your Medically Complex Child at Home
Family Support Chart for Hospitalizations
Moving with Special Health Needs Checklist
One Page Profile for the Medical Setting
Planning for Health Emergencies Toolkit
Problem Tracking Sheet fillable
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Tools to keep everyone safe, happy, and growing
After the Injury (medical trauma)
Camp List for Families and All Abilities
Caregivers of Children with Rare and/or Serious Illnesses
Caring for Your Medically Complex Child at Home
Coping with a Child's Death or Life Limiting Illness
Disaster Preparedness for Families of Children with Special Health Needs
Family Support Chart for Hospitalizations
Foster Care and Disability: A Toolkit for Resource Parents
Funding Resources that Include Fun!
Generations United, Grand Resources
Planning for Health Emergencies Toolkit
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Specific condition support
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
Guidebook for Children and Youth Newly Diagnosed with Epilepsy
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Materiales de familia a familia
Animales de servicio y apoyo para niños/as y jóvenes con necesidades de salud especiales caja de herramientas para familias (Service dogs and emotional support animal toolkit)
Caja de herramietas para un emergencia (EMSC toolkit Spanish)
Cambiando de un pediatra a un médico para adultos (Moving from the pediatrician to adult health care)
Cómo solicitar equipo médico duradero, equipo médico de alimentación, o suministros para las prótesis (Reglas del camino) (How to get your child the equipment s/he needs or "Rules of the road")
¿Confiar o desconfiar? Utilice esta herramienta para evaluar la calidad de los materiales (Trust it or trash it? Finding reliable medical information)
Cuando el seguro médico no cubre (When insurance won't pay)
El equipo de mi hijo/a (My child's team)
Hoja de consejos: correo de voz y la salud de su hijo/a (Voicemail and your child's health)
Hoja de seguimiento de problemas (Problem tracking sheet)
La atención en casa para su niño/a con necesidades médicas complejas (Caring for your medically complex child at home)
Nuestros Coordinadores de Atención (Our Care Coordinators)
Plantilla de Perfil de Salud (One page profile template)
Perfil de Salud: Ejemplo para adulto joven (One page profile sample young adult)
Preparación para una emergencia: recursos y estrategias para familias (Emergency Preparedness Resources Handout)
Seguro médico: Conozca a su coordinador de cuidados intensivos de su hijo con necesidades excepcionales (Getting to know your exceptional needs coordinator)
Servicios para familas de niños y jóvenes que tienen necesidades especiales (Children and youth with special health needs services for Spanish speaking families)
Sillas de ruedas para niños y jóvenes (Selecting and paying for a pediatric wheelchair)