Health Condition and Disability-Specific Resources
Epilepsy Alliance America is a national organization providing support, care and service to those with epilepsy, their families, caregivers and communities. The organization’s services and supports include:
Epilepsy and Seizures 24/7 Helpline
The Epilepsy Foundation’s Epilepsy and Seizures 24/7 Helpline has trained information specialists to help answer your questions about epilepsy and seizures and provide you with help, hope, support, guidance and access to national and local resources. You can access the helpline in several ways:
- Online Help Form
- Phone (English): (800) 332-1000
- Phone (en español): (866) 748-8008
The helpline serves people living with epilepsy, caregivers and friends of someone with epilepsy and anyone who wants to learn more about epilepsy. It can provide information about current epilepsy treatment and alternative therapies, medication questions, support groups, seizure first aid, emotional support and more.
Epilepsy Foundation of Greater Chicago
The Epilepsy Foundation of Greater Chicago is a not-for-profit organization serving 44 counties in Illinois. It offers education, advocacy and case management to people living with epilepsy, their families and the communities in which they live.
The foundation’s client services include case management, programs for children and adults, epilepsy centers, support groups, employment, medications, and driving and transportation.
Epilepsy Foundation of Greater Southern Illinois
The Epilepsy Foundation of Greater Southern Illinois aims to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures and save lives. Its programs include epilepsy and seizure support services, home-based services, residential services, epilepsy education programs, support groups, Camp Roehr, a scholarship and more.
Its website also provides resources, including a New to Epilepsy Guide, a seizure calendar, a Professionals and Caregiver Guide, and more.
For questions or more information, please visit the Contact Page for the Southern Illinois Region Office and the Epilepsy Foundation of Greater Southern Illinois for coverage information and phone numbers.
Epilepsy Foundation of Greater Southern Illinois’ Camp Roehr
The Epilepsy Foundation of Greater Southern Illinois (EFGSI) hosts an annual, overnight camp for children and teenagers with epilepsy. Camp Roehr provides campers ages 6 to 17 with seven days of fun, building friendships and learning about living with epilepsy. Camp registration typically begins in mid-April. Participant requirements include:
- Living in Illinois or surrounding states
- Having a primary diagnosis of epilepsy and well-controlled seizures
- Being able to care for their own basic needs and ready for an overnight camp experience
Fathering a Deaf or Hard-of-Hearing Child: An Onboarding Checklist for Dads
The Early Hearing Detection and Intervention (EHDI) Parent to Parent Committee developed a checklist written by fathers of children who are deaf or hard of hearing(D/HH) for dads or any person who feels that they fulfill this role in a child’s life.
“Fathering a Deaf or Hard-of-Hearing Child: An Onboarding Checklist for Dads” provides information and action steps to support and encourage fathers to take an active role in every aspect of their child’s life from the start. The guide shares information from a dad’s perspective on topics including:
- The ” new dad” learning curve
- Language and communication
- School and legal rights
- Well-being
Feeding Tube Information from Lurie Children’s Hospital
Ann and Robert H. Lurie Children’s Hospital of Chicago provides this video on “The Basics of Caring for a Child With Feeding Tubes.” Lurie also provides the parent guide, “Supporting Nutrition: Understanding Tube Feeding.” The reference guide includes personal stories and information on:
- Administering feedings through the feeding tube
- Changing the dressings and cleaning around the tube
- Problems that may occur with the gastrostomy tube or the insertion site
Lurie’s website also offers tube-feeding resources for children and adults with cystic fibrosis and an overview of the types of feeding tubes for children.
Please note this information is not a substitute for the medical care and advice of your physician. There may be individual circumstances in your child’s healthcare that cause a variation in treatment.
Find Help Southern Illinois connects people to area programs and services, including:
- Food and basic needs, such as food pantries, baby supplies, clothing and home goods
- Housing and shelter options
- Healthcare services, including medical, dental and vision care and transportation to health care
- Addition and recovery support
- Mental well-being services
- Financial assistance for child care, transportation, medical supplies and more
- Use the search filter to find the help you need in your community—sort by “closest” to receive the local information first
- Education and employment programs
- Legal assistance
The resource hub is an initiative of Southern Illinois Healthcare, Healthy Southern Illinois Delta Network and the Southern Illinois Coalition for Children and Families. The hub also receives support from the McKinney Vento Program for the Homeless Region V, Carbondale Elementary School District 95, Herrin Community Unit School District 4 Family Outreach Program, and the Carbondale Community Cabinet for Children and Youth with funding provided by Birth to Five Illinois.
Finding Help for Young Children With Disabilities and Developmental Delays
Every child is unique, and some children face extra physical or learning challenges. Parents often have questions about sources of information and support. This Finding Help for Young Children With Disabilities and Developmental Delays resource list from the Illinois Early Learning Project shares information for parents on how to get your child evaluated, how to get special education services for your child and where to find more information to support children with autism, Down syndrome, hearing loss and vision loss.
FIRST.IL Mental Health Program
FIRST.IL is a program of the Illinois Department of Human Services/Division of Mental Health. It is a specialized treatment approach that helps individuals who are between the ages of 14 to 40 and who have had a treated or untreated psychotic illness for no more than 18 months.
The program aims to reduce the symptoms of psychotic illnesses, improve individual and family functioning, promote recovery, reduce the chance of relapse and more.
Eligible diagnoses are schizophrenia, schizoaffective disorder, schizophreniform disorder or other specified/unspecified schizophrenia spectrum and other psychotic disorder, bipolar disorder with psychotic features, major depressive disorder with psychotic features and PTSD with dissociative symptoms.
Individuals can call the FIRST.IL agency in their service area for an assessment. If the agency determines that FIRST.IL treatment is appropriate, they will expedite an appointment with their team psychiatrist.