Pediatric/Adolescent Programs and Resources
Ann and Robert H. Lurie Children’s Hospital of Chicago Spina Bifida Resources
Phone: 1.800.543.7362
Chicagoland resources for families of kids living with spina bifida.
Bounce Children’s Foundation
255 Birchwood Ave.
Deerfield, IL 60015
844-6-BOUNCE (844-626-8623)
They have several programs including: - events designed to enable participation from children with complex medical needs, - donated tickets to sporting, theatre and other events for use by Bounce kids & families, - fun-filled kits sent to families in times of serious medical intervention or to recognize important milestones, holidays or birthdays, - education sessions for parents/caregivers to enhance their abilities to cope financially, intellectually, emotionally and psychologically while their children are supervised close by, safe and entertained, - and a private Facebook group.
Cameron Can Foundation
P.O. Box 373
Riverside, IL 60546
773-425-9942
This organization can provide quality of life grants to Illinois families who care for children with developmental disabilities, especially hydrocephalus. See website or contact them for more info.
Caring for Kids Program
355 E. Erie
Chicago, IL 60611
312-238-1000
Recreational activities for kids with disabilities ages 7-17 through the Shirley Ryan AbilityLab. Contact Ashley for more info.
The Center for Independence Through Conductive Education
Locations in Countryside, Chicago and Lake Zurich
The Center for Independence Through Conductive Education helps children with physical disabilities gain physical independence through programs that develop the motor functions of the child in a manner that creates positive self-esteem and self-direction.
708-588-0833
Chicago Children's Advocacy Center
1240 S. Damen
Chicago, IL 60608
312-492-3700
Resources for the prevention of abuse of children with disabilities. Click here for more info.
The University of Illinois at Chicago's Division of Specialized Care for Children (DSCC)
Locations throughout Illinois
Phone: (800) 322-3722
Email: dscc@uic.edu
DSCC provides free care coordination for families of children with special healthcare needs. Care coordination is tailored to each family’s needs and can include finding specialized medical care, helping maximize insurance and All Kids/Medicaid benefits, communicating with doctors and schools, preparing youth for the transition to adulthood and paying for certain medical expenses, such as wheelchair ramps, lifts and orthotics. Children from birth to age 21 with certain chronic medical conditions, including nervous system impairments, are eligible. They have a transition resources page for youth and their families.
Easterseals
Locations in Chicago, Peoria, Joliet & Villa Park
800-221-6827
Ellavation
Ellavation's mission is to help spread love to families impacted by the additional financial load of caring for a loved one affected by spina bifida by offering experiences and financial assistance to help improve quality of life.
Got Transition
Online info for youth and families on the transition process and transition resources.
HealthWell Foundation
(800) 675-8416
A national organization dedicated to improving access to care for the under-insured. They can assist with copays, premiums, deductibles and out-of-pocket expenses for people with private insurance.
Illinois Dept of Human Services Early Intervention
1-800-447-6404 - Services to help children with disabilities ages 0-3 to learn and grow.
Illinois Early Intervention Clearinghouse Resources for Families
University of Illinois at Urbana-Champaign
Children’s Research Center, Room 20, 51 Gerty Drive
Champaign, IL 61820
877) 275-3227
The Illinois Early Intervention (EI) Clearinghouse identifies and collects research-based and best-practice early intervention information to share with families and is operated by the Early Childhood and Parenting (ECAP) Collaborative at the University of Illinois.
NAPA (Neurological and Physical Abilitation) Center
NAPA Center is an outpatient pediatric therapy clinic, dedicated to delivering comprehensive and innovative therapy services to children with a variety of neurological and developmental needs. NAPA Center specializes in the intensive model of therapy, which spans 3 weeks (Monday-Friday) and includes 2-5 hours of therapy per day. An individualized treatment plan is designed for each child to meet each family’s unique goals, containing a combination of dynamic movement intervention (DMI), speech therapy, feeding therapy, occupational therapy, and physical therapy. Through both the intensive model of service delivery as well as traditional weekly services offered, NAPA Center operates under the vision of sustaining inventive practice through education and interdisciplinary teamwork.
New Parents Information Regarding A New Spina Bifida Diagnosis from Children’s Hospital of Philadelphia (An online resource)
SAILS: Supporting Adolescents with Independent Life Skills
Lurie Children's SAILS (Supporting Adolescents with Independent Life Skills) program offers a six-week curriculum to teach teens to prepare for their future in work, college and managing their healthcare. There are also sessions for parents for more information and support.
Secondary Transitional Experience Program (STEP) - Illinois Department of Human Services
Division of Rehabilitation Services
P.O. Box 19429
Springfield, Illinois 62704
877-761-9780
A program that helps students with disabilities prepare to transition to employment and community participation during and after high school. Contact your local high school or DHS/DRS office for more information.
Sibling Support Project
This website has a directory of "sibshops" in Illinois. Provides young brothers and sister of kids with disabilities opportunities to meet their peers and discuss their common joys and concerns in an atmosphere that emphasizes play, discussion, wellness, and camaraderie.
Star Net
6 Regions Throughout Illinois
Illinois STAR NET provides a variety of opportunities for personal and professional growth for those who touch the lives of young children, ages birth through eight, with an emphasis on children with special needs.
Toolkit For Transitioning Medical Care
It is so important that the members of your adult hydrocephalus medical team have the proper information about your hydrocephalus to successfully manage your care. And, as we know, everyone with hydrocephalus is different. For this reason, the Hydrocephalus Association, their Medical Advisory Board, and members of the American Society of Pediatric Neurosurgeons (ASPN) developed the Medical Summary for Transitioning Hydrocephalus Patients that you can download and fill out with your current pediatric medical team. Once complete, take this to your new adult neurosurgeon, neurologist, and any other members of your adult medical team you feel will benefit from understanding your journey with hydrocephalus. This includes a Physician’s Assistant, Nurse Practitioner, other specialists.
United Healthcare Children’s Foundation’s (UHCCF)
MN017-W400
PO Box 41
Minneapolis, MN 55440-0041
Phone: 1 855-MY-UHCCF / 1 855-698-4223
The mission is to help fill the gap between what medical services/items a child needs and what their commercial health benefit plan will pay for. UHCCF grants provide financial help/assistance for families with children that have medical needs not covered or not fully covered by their commercial health insurance plan.
VARIETY- The Children's Charity of Illinois
1001 W. 75th St
Woodridge, Illinois 60517
312-822-0660
Funding and services for programs that work with kids with disabilities. Grants for adaptive equipment.
Updated 10/26/2023