Medical/Health and Wellness Resources
Package of Hope for NICU Families
Lily’s Hope Foundation offers free customized care packages to families with premature babies either in the Neonatal Intensive Care Unit (NICU) or when they are being discharged.
Its Package of Hope program provides packages customized to a family’s specific needs. A sibling care package is also available.
Packages are shipped throughout the United States based on availability. One Package of Hope per family.
Pediatric Tracheostomy Tube Emergency Management Video
In this video, nurses from Ann and Robert H. Lurie Children’s Hospital of Chicago describe and demonstrate emergency management for pediatric patients with tracheostomy (trach) tubes. The video covers:
Prevention and assessment of emergency situations
How to manage a mucous plug
How to replace a trach tube that has become dislodged
What to do if the trach tube is difficult to replace
When to provide manual ventilation using bag to trach tube, bag and mask to mouth, and mouth to mouthPKU Resources from University of Louisville School of Medicine
The University of Louisville School of Medicine website provides a wide range of PKU (Phenylketonuria) resources to support families.
The Family PKU Booklet provides information for families after a positive newborn screening. Using illustrations and clear language, the booklet helps make complicated, scientific information easier to understand.
The site also includes:
Caregiver and school preparation tips
Nutrient trackers
Downloadable PHE and protein log templates
Recipes and low protein food suppliers
PKU community resourcesA portable medical summary is helpful for summarizing your medical information in one to two pages. You can use this summary across healthcare systems, including:
With the emergency department
In the transition to adult providers
With your college campus health services and moreThe summary can help provide quick and concise communication with all providers involved in your care as you transition to adulthood.
Premier Kids: Primary Care at La Rabida Children’s Hospital
Premier Kids is a medical home program for children birth to age 6 with special needs. It provides primary care services for children with medically complex conditions and/or developmental delays. To make an appointment, call (733) 256-5700, ext. 2.
REACH Learning and Resource Hub
REACH Learning and Resource Hub provides free, virtual training to help educators, clinicians, parents and caregivers better support the mental health and resilience of the children and youth in their lives. The interactive, on-demand resources focus on:
Trauma-responsive practices
Personal and professional resilience
Social-emotional awareness
Self-careLearn about the newborn screening information in Illinois and bordering states in Region 4.
Resources for Inclusion in Physical Activity and Youth with Disability
The National Center on Health, Physical Activity and Disability (NCHPAD) compiled links to a multitude of resources related to children with disabilities and their inclusion in physical activities in this guide.
The Arc’s Talk About Sexual Violence project provides materials and practical tools to help health care professionals, people with disabilities, and their families and supporters learn about the depth of the problem, support victims and work to prevent it.
Talk About Sexual Violence seeks to empower survivors with disabilities in the reporting process and give health care professionals the tools to more effectively identify victims, connect them to appropriate services, help build their self-advocacy skills and better prevent sexual violence.
In addition to the “Starting the Conversation Toolkit for Self-Advocates,” put together by Self-Advocacy Resource and Technical Assistance Center (SARTAC), resources include short training videos for healthcare professionals, tools to help guide conversations and more.
Resources to Understand and Maximize Your Health Coverage
The Centers for Medicare & Medicaid Services has developed the Coverage to Care (C2C) initiative. C2C provides information to help you understand your health coverage and connect to primary care and the preventive services that are right for you.
Resources are provided in multiple languages and on topics including:
Five steps for making the most of your health coverage
Telehealth services
A step-by-step roadmap to health
A companion roadmap to behavioral health
Videos on maximizing your health coverage