Family and Caregiving 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.
Siblings with a Mission is an international organization that supports siblings and families of individuals with complex health conditions and developmental disabilities. The organization serves both siblings and sibling supporters (parents, grandparents, friends, healthcare providers, professionals, etc.) of all ages and backgrounds. It provides:
- Sibling support groups focused on a specific diagnosis or disability
- SibSpot, a place where siblings and sibling supporters can read stories about sibling heroes and meet other siblings from around the world
- Resource lists and more
For questions, email siblingswithamission@gmail.com.
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
For questions, please contact the Sickle Cell Disease Association of Illinois at (773) 526-5016 or sicklecelldisease-illinois@scdai.org.
SIP Arts Foundation, Inc. is an Illinois nonprofit supporting individuals with disabilities and their families. It offers community education on special education laws, disability rights and advocacy. The foundation also offers opportunities to provide a voice and foster healing through creative expression in the arts. SIP Arts Foundation programs include:
- One-on-one person-centered planning that maps each family’s goals and next steps
- Free community meals that reduce isolation and bring families together
- Group advocacy workshops where every family leaves with a personalized binder organizing their child’s Individualized Education Program (IEP), rights and records
- Pathways to Expression, an inclusive studio arts program in Belleville for children ages 4 to 12 with and without disabilities
- Self-advocacy programming in St. Clair and Madison counties that helps young people find their voice and prepare for the transition to post-secondary education and employment
For questions, please visit SIP Arts Foundation’s “Let’s Connect” page or email info@sipartsfoundation.org.
Sleep Help for Individuals With ASD
Autism Speaks offers parents helpful tips for establishing good sleep hygiene and tool kits targeting sleep strategies for children, teens and adults on the spectrum.
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
Social Security administers benefits such as Retirement, Disability, Survivor and Family. It also manages Supplemental Security Income (SSI), enrolls people in Medicare and issues Social Security numbers and cards.
The Social Security Administration website provides information on how to check your eligibility for benefits, apply for benefits and check your application or appeal status. It also has tools to help you manage your benefits and information.
For contact information and a list of frequently asked questions, visit the Social Security contact page.
Southern Illinois Pathways is a grassroots initiative led by individuals with disabilities, family members and professionals to support families navigating disability, special education and mental health systems across metro east Illinois. It offers free, plain-language workshops for families, students, young adults, and individuals with disabilities. It helps make disability rights, Individualized Education Programs (IEPs), mental health supports, local services and self-advocacy easier to understand.
Southern Illinois Pathways offers free:
- Resources for families
- A local workshop series on Saturday mornings at libraries in each county. The workshops cover disability rights, IEPs and services in plain language.
- Events
Southern Illinois Pathways is a program of SIP Arts Foundation, Inc., an Illinois nonprofit advancing arts, disability advocacy and education across Madison, St. Clair and Monroe counties in metro east Illinois.
For questions, please contact Southern Illinois Pathways at (618) 816-8834, (618) 623-2423 (direct) or info@southernilpathways.com.
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 Coalition for Housing (SCH)
The Spanish Coalition for Housing (SCH) seeks to build generational wealth through housing counseling, financial education, advocacy and by connecting low-to-moderate income households to resources that create housing stability, homeownership and economic mobility. Services are based in Chicago and include workshops, homebuyer education, homeowner education and counseling, landlord certification and more. SCH programs also include:
- Financial education and coaching
- Rental and mortgage help
- Utility assistance
- Health and housing
For questions, please email help@sc4housing.org.