Family and Caregiving Support Resources
Give an Hour – Rare Caregivers
Give an Hour aims to create resilient communities of support for rare disease caregivers and families. Through one-on-one peer support, group support, professional training and research, Give an Hour strives to build a sustainable support system for rare caregivers.
Visit the Give an Hour Rare Caregivers website to find peer support, self-care tips, support groups and more.
Global Genes is a non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. It aims to connect, empower and inspire the rare disease community.
The Global Genes website includes a RARE Portal, which is an online community for patients, caregivers and more to share resources and create discussion groups.
Granted helps “wishes” come true for children in southeast Illinois, southern Indiana and western Kentucky with terminal or life-threatening conditions. The non-profit aims to give children and their families respite from the physical, emotional and financial toll of a life-threatening illness. Granted’s wishes aim to to provide strength, hope, joy and a wonderful experience that the family can enjoy together and treasure among their memories.
Granted’s services also include events throughout the year, support groups and resource referrals for families in crisis. The organization serves a 100-mile radius of Evansville, Ind. See a map of Granted’s service area.
For questions, please contact Granted online.
Grupo SALTO (Sociedad de Autismo Latina Trabajando con Optimismo) aims to provide support in Spanish for Latino families who have children who are differently abled, with a focus on autism.
Grupo SALTO provides culturally and linguistically appropriate training, education and services.
There are many myths about guardianship that people with intellectual and developmental disabilities (IDD) and their families should understand.
The Arc’s Center for Future Planning has created this handout to help.
Guide for New Mental Health Caregivers
Mental Health America (MHA) has created an online guide to help new mental health caregivers navigate their role. The guide includes information about getting started after a diagnosis, challenging stigma, navigating red tape, understanding challenges during recovery, knowing the role of legal caregivers, taking care of yourself and more.
For questions, please visit Mental Health America’s website.
Hands & Voices is a non-profit, parent-driven organization dedicated to supporting families of children who are deaf or hard of hearing. They are non-biased about communication methodologies and believe that families can make the best choices for their children if they have access to good information and support.
Hands & Voices Guides and Resources for Deaf/Hard of Hearing Plus
Hands & Voices provides a variety of resources specific to children who are deaf/hard of hearing plus – the combination of being deaf or hard of hearing and having additional medical complexities or other needs.
Information includes the “Connecting Families of Children who are Deaf or Hard of Hearing Plus (DHH Plus) with Resources and Support” guide, an Educational Plan Checklist for D/HH-Plus Students and presentations, articles and other guides for families of children who are D/HH plus.
Hands & Voices Virtual Waiting Room
Hands & Voices virtual waiting room provides resources and connections for families with children who have been referred to or are in the care of an audiologist and who are receiving those services through technology or “telehealth.” Much of the information is also useful for families who are preparing for onsite visits.
Hands & Voices virtual waiting room includes:
- A video about the importance of next steps when your child is referred for more testing after a hearing screening
- A guidebook for parents about audiology and telehealth
- Information about tele-audiology options
- Questions to ask your audiologist, understanding your child’s audiogram, help making decisions with communication and more
- Connections to family-to-family support from trained parent leaders
- Explanations of help offered by a variety of professionals in addition to your child’s audiologist
- Resources to promote health and well-being for you and your child
- A link to email a Hands & Voices trained parent who can answer your questions and direct you to additional resources
Healing Hurt People Chicago (HHPC) is a hospital-based, youth advocacy program for violence recovery. HHPC services begin in the hospital and include crisis intervention, mental health care, medical advocacy, team support support and patient advocacy. The program also connects participants to supports and a community where they can continue to grow, thrive and break the cycle of violence once they leave the hospital.
HHPC programs and resources for individuals, families and loved ones recovering from trauma also include:
- Information about trauma and the SELF (Safety, Emotion, Loss, and Future) model
- Stories of healing
- Strategies for coping
- Resources for families
- Resources for providers
For questions, please contact HHPC at info@HealingHurtPeopleChicago.org or (312) 864-2735.
