Chicago Resources
A Family Toolkit: Pediatric-to-Adult Health Care Transition
Got Transition and its National Family Health Care Transition Advisory Group have developed a new toolkit for families to use to guide their youth’s transition from pediatric to adult health care.
The Family Toolkit includes easy-to-use resources for youth and families to help youth assume more independence in taking care of their own health and using health services. Materials include a transition timeline, questions to ask your doctor, what turning 18 means for one’s health and more.
Bright by Text is a free text messaging service that delivers high-quality information to families to help them foster a child’s healthy growth, based on their exact age and developmental stage.
Available in English and Spanish, the service covers children from prenatal through age 8. Topics covered include brain development, speech and language skills, social-emotional development, reading and writing skills, nutrition, mental health, school readiness, and more.
All information is provided by trusted content partners, including the American Speech-Language-Hearing Association, the Centers for Disease Control and Prevention, Sesame Street, PBS Kids for Parents, and Zero to Three.
Families can sign up by texting BRIGHT to 274448, or by using the form on the Bright by Text website. Text messages are customized by the child’s due date or age and zip code.
The Courageous Parents Network aims to empower, support and equip families and providers caring for children with serious illness.
Adult Congenital Heart Disease (ACHD) Clinic Directory
The Adult Congenital Heart Association’s ACHD Clinic Directory provides information on ACHD Board Certified providers certified by the American Board of Internal Medicine (ABIM) and ACHA ACHD Accredited Centers.
You can search for clinics by zip code and state. You can find more details and health information on the Adult Congenital Heart Association’s website.
Mother’s Milk Bank of the Western Great Lakes
Mothers’ Milk Bank of the Western Great Lakes provides safe, pasteurized donor human milk to premature and critically ill babies.
Milk Bank WGL also supports moms who donate milk after loss and distributes reduced-cost or free donor milk to chronically ill middle and low-income children.
This non-profit organization serves over 50 hospitals and hundreds of families throughout Illinois and Wisconsin.
JCFS Chicago’s Respite Program
JCFS Chicago’s Respite Program provides support to families caring for children and youth with special needs.
Its program “takes a supportive, nurturing and therapeutic approach, combined with fun, social and recreational activities, while providing a well-deserved break for parents.”
For more information, visit the JCFS website, email ask@jcfs.org or call toll-free at (855) ASK-JCFS (275-5237).
It’s easy to view self-care as a low priority when your child is diagnosed with a serious illness. Your role as a parent and parenting partner has unexpectedly changed. The child has urgent and complex medical needs; you must manage appointments and service providers, and learn new information about the disease and medical treatment—all while tending to the needs of other family members, work and/or other responsibilities.
The Courageous Parents Network provides this guide to help parents make time and find ways to take care of themselves.
Bilingual Parents Video Library
The Illinois Resource Center has put together a library of videos for bilingual parents with videos in French, Tagalog, Urdu, Arabic, Polish, Spanish and English.
Each video showcases subjects and information relevant to parents, caretakers and community members, such as the role of Bilingual Parent Advisory Committees, financial aid for college, tenant rights, multilingual student rights and more.
Respiratory Virus Resources for People with Disabilities
Some people with disabilities may be more likely to get very sick from the flu, COVID-19 or respiratory syncytial virus (RSV). Underlying medical conditions can add to their risk
The Centers for Disease Control and Prevention (CDC) provides a list of respiratory virus resources and tips for people with disabilities on its website.
Rare Caregiver Respite Program
The National Organization for Rare Disorders’ (NORD) Respite Program is for caregivers (parents, spouses, family members, or significant others) of a child or adult diagnosed with a rare disorder. The program provides financial assistance to allow caregivers a break to attend a conference, an event, or have an afternoon or evening away from caregiving.
The Respite Program awards are granted to eligible individuals on a first-come, first-served basis. There is no fee to apply.
For more information about this program, contact NORD at (203) 616-4328 or email CaregiverRespite@rarediseases.org.