Resource Directory /

Family and Caregiving Support Resources

  • The Arc of Illinois Family-to-Family Health Information Center

    The Arc of Illinois Family-to-Family Health Information Center works with families and professionals to address questions and concerns about the health of children and youth with special healthcare needs and disabilities under the age of 22.  The center uses its team’s extensive parental and professional experience to help other families access resources, communicate with medical providers and raise children at home in their communities.

    The center offers individual assistance for questions about Medicaid, Supplemental Security Income, insurance, Medicaid waivers, disability programs, special education and more. The center also helps families connect with local, regional, statewide and national partners for support, information sharing and skill building.

    For more information, call (815) 464-1832 ext. 1017, or (866) 931-1110. For information in Spanish, call (800) 588-7002

  • The Autism Hero Project

    The Autism Hero Project champions inclusion and fosters an environment where everyone, regardless of neurodiversity, is valued and empowered to thrive. The organization helps support, equip and foster acceptance of people with autism.

    The Autism Hero Project provides:

    The Autism Hero Project Medical Insurance Grant Application program application period usually runs from September through October. If you have any application questions, please email applications@autismheroproject.org.

  • The Center for Chronic Illness

    The Center for Chronic Illness (CCI) is a nonprofit organization that offers support and education to promote well-being and reduce isolation for people affected by chronic illness. CCI offers adults and teens living with chronic illness a variety of support groups and programs focusing on emotional well-being, health education and community. ​CCI provides:

    For questions, contact CCI at (425) 296-2705 or info@thecenterforchronicillness.org.

  • The Colette Louise Tisdahl Foundation

    The Colette Louise Tisdahl Foundation provides support and financial help to families in crisis due to pregnancy complications, premature birth/neonatal intensive care unit stay and loss. This financial assistance may help cover:

    • Childcare
    • Medical bills
    • Transportation costs
    • Rent/mortgage and utilities
    • Post-loss/funeral/burial expenses
    • Grief counseling (individual, couple and family)

    Visit the Colette Louise Tisdahl Foundation website for more details.

  • The Conversation Project

    The Conversation Project is an initiative of the Institute for Healthcare Improvement (IHI) to help people talk about their wishes for care at the end of life so others can understand and respect them. 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

    For questions, please email The Conversation Project at conversationproject@IHI.org.

  • The Diaper Bank of Southern Illinois

    The Diaper Bank of Southern Illinois serves as a central location for collecting and storing 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

    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 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

    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

    For questions, contact the HAP Foundation at (312) 741-1283 or info@thehapfoundation.org.