Family Support Resources
The Conversation Project is an initiative of the Institute for Healthcare Improvement (IHI) to help people talk about their wishes for care through the end of life so others can understand and respect those wishes. The project offers free tools, videos and other resources to help make difficult conversations with loved ones easier. Resources are available in English, Spanish, Chinese and Audio (English). Guide topics include:
- A conversation starter guide
- Talking to your health team
- What matters to me workbook for people with serious illness
- How to start talking with a child who is living with a serious illness about the health care that is right for them
- Encouraging conversations in your community
The Diaper Bank of Southern Illinois
The Diaper Bank of Southern Illinois serves as a central location to collect and store donated diapers. The Diaper Bank partners with local service agencies to distribute diapers to low-income children and their families.
To request diapers, the Diaper Bank of Southern Illinois requires that the agency has an ongoing relationship with the client and has screened for need. Agencies may contact diaperbanksi@gmail.com or call (618) 549-2148, ext. 110.
The Dream Factory is a volunteer-driven children’s wish-granting organization. Volunteers raise funds in their communities to grant dreams to local children ages 3 through 18 who have a life-threatening illness or are critically and chronically ill. Dreams are granted through local chapters. Referrals can be made by:
- A parent or legal guardian of an ill child
- A treating physician of an ill child
- The ill child
In Illinois, contact the Dream Factory of Central Illinois at centralillinois@dreamfactoryinc.org. You can find other local chapters on the Dream Factory website.
The Early Years Project
The Early Years Project is a free online toolkit from the Illinois Early Hearing Detection and Intervention Program featuring easy-to-follow videos, activities and resources. Parents, caregivers, and educators can use these materials to help foster sensory development in young children, from birth to 6 years old.
The Early Years Project toolkit aims to supplement home visiting and early education programs. It includes information on developmental milestones, activities, resources and more in four areas:
- Hearing
- Vision
- Communication
- Language
The Good Samaritan Inn in Decatur
The Good Samaritan Inn provides meals to all those who need them, no questions asked. Meals are served seven days a week from 11:30 a.m. to 1 p.m. Its programs also include Mercy Gardens and Mercy Market from June through October.
Good Samaritan Inn is located at 920 North Union St. in Decatur.
For more information, call (217) 429-1455.
The HAP Foundation provides patient-centered hospice and palliative care education, research, workforce development and support. The foundation helps any family of a child or adult living with a serious illness understand palliative and hospice care options, and connect to and strengthen care throughout their journey. The HAP Foundation resources also include:
- Palliative and hospice care information for families and medical professionals
- Help for finding and accessing care
- Missing Pieces support group for anyone grieving the loss of a child
- The Pediatric Resource Guide for patients, families and practitioners
- Chicagoland resources and events
The Hydrocephalus Association provides information and resources for people of all ages living with or caring for someone with hydrocephalus.
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 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