Medical/Health and Wellness Resources
The Journey Through Diagnosis: A Guide for Families of Children with a Genetic Condition
The Family Forum of the Region 4 Midwest Genetics Collaborative wrote this guide to provide information and support to families whose child has been diagnosed with a genetic condition. It is written from the family perspective and includes information they felt was important when facing a new diagnosis. The material includes advice and tips to help guide families on their journey.
The KASE Project aims to raise awareness and support for autism through community outreach in the Springfield area. Its programs include:
- PECS (Picture Exchange Communication) at the Park – an initiative to install picture communication boards at local parks and playgrounds.
- PALS (Parent Autism Life Support) – a caregiver support initiative for parents, siblings and caregivers of children and adults with autism in Sangamon County. PALS currently hosts a support group for moms.
- FLASH (Friends Learning and Sharing Hope) – an effort to bring adaptive sports to the Chatham community and beyond.
- SIBS – A Sibshops program for siblings of children with health, mental health and developmental needs.
The Kinda Guide is designed to be a weekly survival guide for parents and families that will include expert tips on remote learning, parenting advice, virtual camp activities, simple meal and snack ideas and at-home family adventures.
The Laurent Clerc National Deaf Education Center at Gallaudet University
The Laurent Clerc National Deaf Education Center at Gallaudet University is a federally funded center providing elementary and secondary education programs for deaf and hard-of-hearing students. The Clerc Center Online Community provides best-practice videos, research, toolkits and resources for families of deaf and hard-of-hearing children and the professionals who work with them.
Clerc Center resources include:
- The Language First Parent Guide, a step-by-step roadmap for parents with children who are deaf and hard of hearing
- Family-focused activities such as American Sign Language (ASL) classes, bilingual storybooks and more
The Mighty’s Digital Toolkit for Caregivers
The Mighty provides a digital toolkit to help caregivers learn more about the ins and outs of caregiving and discover helpful resources to utilize along their caregiving journey.
The Mighty’s Digital Toolkit for Caregivers includes:
- A caregiving binder, complete with worksheets to help you better organize important information
- A respite care questionnaire to help you find the perfect respite worker for your specific needs
- A self-care mini-guide to help you destress and prioritize your mental health
Everything included in the toolkit is downloadable, printable and shareable.
The Neighbor Project (TNP) is a nonprofit, HUD-Certified Housing Counseling Agency dedicated to helping low to moderate-income families in Aurora reduce debt, build credit, save and ultimately buy their first homes.
The Nest Postpartum is a nonprofit that serves families with a child in the neonatal intensive care unit (NICU) at Carle Hospital in Champaign.
It provides services such as transportation, lodging, prepared meals, care coordinator check-ins and links to other community support programs for families staying in the NICU.
The Night’s Shield is a nonprofit that works with children who have been victims of abuse, abandonment and neglect. The organization has provided free diapers, furniture, child care items, hygiene items, school supplies, food and clothing to families in need.
The Night Shield’s Family Advocacy Center provides services to help strengthen families and relationships, including case management and client advocacy, life skills/coaching, parenting classes/groups and more.
The Painted Turtle Overnight Camp for Children with Serious Medical Conditions
The Painted Turtle is a year-round, overnight camp in California for children ages 7 to 17 with a variety of serious medical conditions, their siblings and family members. Condition-specific camp sessions and family weekends (for children ages 6 to 17) aim to encourage children to try new things and develop lasting friendships. Campers and their families attend free of charge.
The camp has a full-time medical staff, a health center and a physician onsite at all times. The Painted Turtle provides camper eligibility guidelines and medical criteria to help determine the best session for your child and family.
The Parent Advocacy App for Families of Deaf or Hard-of-Hearing Children
The Parent Advocacy app is a free application for families of children who are deaf or hard of hearing attending Individualized Education Program meetings, 504 Plan meetings and more.
The app aims to help you understand your child’s rights and prepare to work with the school in the best interest of your child.