St. Clair Resources
NeuroJourney is an educational resource for parents, caregivers and clinicians navigating the ever-evolving needs of children with severe neurological impairment (SNI).
You can find both practical and medical information and insights from parents and clinicians about the social and emotional experiences common to having a child with SNI. Resources include a Caregiver Worksheet as well as guidance to help build the care team, prompts for conversations with specialists and more.
National Association for Down Syndrome
The National Association for Down Syndrome (NADS) serves individuals with Down syndrome and their families. NADS’ website provides a variety of webinars, publications and resources for the Chicago metropolitan area and beyond.
NADS also offers a “Congratulations Basket and Referral Program.” Please note that the organization can only deliver baskets to specific Chicago-area hospitals.
Jack’s Basket supports new parents of a child with Down syndrome by providing information, a support system and a welcome basket to let them know they’re not alone. Baskets are available from the time of diagnosis (prenatal or at birth) up to the baby’s first birthday. Parents, friends, family members, healthcare providers or Down syndrome organizations can request baskets.
The website also includes local and national resources to support people with Down syndrome and their families.
Increasing Community Access to Testing (ICATT) for COVID-19
The Centers for Disease Control and Prevention’s Increasing Community Access to Testing (ICATT) testing locator can help you find no-cost COVID-19 testing locations and contact information for the providers.
Every provider handles appointments differently. Please be sure to schedule your appointment directly with the provider you choose.
The Test to Treat site can help you be tested, treated and prescribed treatment for COVID-19 at little to no cost. The site provides information on accessing lifesaving treatments for COVID nationwide and contacting the Centers for Disease Control and Prevention (CDC) COVID-19 hotline and the Disability Information and Access Line (DIAL).
eHomeCare Online Course on Caring for Children With Trachs
The eHomeCare program is a free online training program that aims to provide comprehensive information for those caring for children with a tracheostomy (trach) with/without a ventilator. The training is for:
- Nurses working in home-based environments
- Physicians
- Respiratory therapists
- Family members and caregivers of children with trachs with and without ventilators
The course is available until Sept. 30, 2026. Learners can use this course for initial training, an annual review or as an ongoing resource.
DSCC’s Medicare Fact Sheet
Medicare is federal health insurance run by the Social Security Administration. This fact sheet from the Division of Specialized Care for Children (DSCC) explains the program’s eligibility and how to enroll.
It also explains the Medicare Savings Program, the Extra Help Program and Medicare coverage and costs.
Medicare Fact Sheet in English
Medicare Fact Sheet in Spanish
HealthyChildren.org’s “Childhood Grief: When to Seek Additional Help”
Many children experience the death of a close family member or friend at some point during their childhood. The American Academy of Pediatrics’ website HealthyChildren.org provides information for parents about childhood grief, ways to help your child, and where to find support.
The information includes:
- Signs your child may need more help
- Important information about tweens
- Resources for more information
Health Resources and Services Administration (HRSA) COVID-19 Provider Locator
The Health Resources and Services Administration (HRSA) provides a Find a Health Center locator tool to help you find health centers and COVID-19 services in your community. The tool is available in many languages.
Resource Guide “When a Child Dies: Planning Acts of Love and Legacy”
The loss of a child is never easy. The Funeral Service Foundation’s free guide “When a Child Dies: Planning Acts of Love & Legacy” offers guidance, support and inspiration to families saying goodbye. Topics include:
- The funeral planning process
- Talking with children about death
- Ideas for planning a meaningful tribute
- Carrying forward and dealing with your grief