Family Support Resources
The Pediatric Palliative Care Coalition (PPCC) and Courageous Parents Network (CPN) provide resources to help parents, caregivers and medical professionals focus on giving special attention to siblings who are living and sharing their lives with a brother or sister with medical complexities.
Their Sibling Support Toolkit provides videos, activities, podcasts, a guided pathway and other resources to support parents and siblings as they navigate the ups, downs, setbacks and joys that make up their day-to-day lives.
Sickle Cell Disease Association of Illinois
The Sickle Cell Disease Association of Illinois provides resources, education and support for individuals with sickle cell disease (SCD) and their caregivers. Its website includes information about:
- Current SCD treatment options
- Virtual monthly support groups on Zoom
- GroupMe app support groups (the app is for use on cell phones or computers)
- SCD testing and newborn screening
- Scholarships and camp opportunities
- Events
SNAP Online Purchasing Program
The Illinois Department of Human Services is offering online purchasing for more than 1.8 million Supplemental Nutrition Assistance Program (SNAP) customers across a million households.
Online SNAP will give families easier access to food during the COVID-19 crisis and beyond. Busy parents will no longer have to stress about how they can pick their kids up from school and make it to the grocery store before dinner. And those working multiple jobs or the late shift won’t have to rush to make it before the store closes. All families will have another option to independently secure the food they need.
Social Security Administration
Provides information about the Disability Determination process and Social Security Disability publications and information.
The Social Security Administration (SSA) offers toolkits for people with sickle cell disease and professionals navigating the disability application and evaluation process. The toolkits provide detailed information, examples of the types of medical evidence required for individuals with sickle cell disease, and tips to help with the disability application and evaluation process:
Southern Illinois University Center for Autism Spectrum Disorders in Carbondale
The Center for Autism Spectrum Disorders (CASD) at Southern Illinois University is an interprofessional training and research center providing information and services to area residents with autism spectrum disorder (ASD) and their families. CASD offers ASD screenings, clinical services for children, adolescents and adults, webinars and support.
CASD faculty and students provide a variety of training and services, many at no cost to families and their children. Help is available in the following areas:
- Speech/language
- Social skills
- Emotional-behavioral concerns
- Toileting
- Sleep
- Picky eating and more
For more information, call (618) 453-7130 or email autism@siu.edu.
Spanish Language Resources for Families & Children Who are Deaf or Hard of Hearing
Hands & Voices (Manos y Voces): Unbiased parent-to-parent support and Spanish-language resources for families and children who are Deaf or hard of hearing.
American Speech-Language-Hearing Association (La Asociación del Habla, Lenguaje y Audición): The organization provides Spanish-language information for the public and families with children who are deaf or hard of hearing.
Gallaudet University (Resources for Hispanic Deaf and Hard of Hearing Population): Resources providing contacts, publishers/distributors, and online links to assist Spanish-speaking individuals who are deaf or hard of hearing.
Special Connections of Grundy County
Special Connections of Grundy County promotes inclusion, self-determination and learning for people with disabilities in Grundy County. Programs include a wide range of Special Olympics athletics, arts and crafts, movies, games, picnics, parties, dances and family support throughout the year.
Special Father’s Network is a dad-to-dad mentoring program for fathers raising children with special needs.
The program connects new fathers with special needs children to another father (a Mentor Father) who has experienced a similar situation. The program matches Mentor Fathers as closely as possible based on the child’s special needs, gender, ethnicity, socioeconomic group and relationship to the child e.g., .father, stepfather, grandfather).
The Special Father’s Network is available through the 21st Century Dads Foundation, which raises awareness and resources for greater father involvement and seeks to inspire dads to be present, caring and nurturing.
Special Needs Child Passenger Safety Resource Center
The Special Needs Child Passenger Safety Resource Center, funded by the Illinois Department of Transportation, educates parents and caregivers of children with special needs on the importance of proper child passenger safety. The Special Needs Child Passenger Resource Center’s main location is at OSF Children’s Hospital of Illinois in Peoria. A satellite site is located at LaRabida Children’s Hospital, in Chicago. Its services include:
- A resource center for nurseries and organizations across Illinois that provides over-the-phone and in-person consultation and guidance for proper car seat usage and optimum safety.
- Education to parents, groups, hospital staff and certified child passenger safety technicians on changes in national guidelines and new seat choices.
- Proper selection, installation and fitting of special needs restraints for parents and their children.
- A short-term loan program to provide seats to parents in need.
Learn more on the Special Needs Child Passenger Safety Resource Center website.