General Information and Programs

Spina Bifida Association
1600 Wilson Blvd, Suite 800 Arlington, VA 22209
800-621-3141, 202-944-3285
Guidelines for the Care of People with Spina Bifida - The Guidelines were developed to provide every healthcare professional–from generalists to specialists–a road map of the best evidenced-based and expert treatment available from birth through adulthood.

ABLE Accounts Information (Achieving a Better Life Experience)

accessABLE - News & Updates from the Illinois State Treasurer’s ABLE Plan.
ISBA ABLE Savers Program - ISBA's new ABLE Savers program promotes workforce development among adults with spina bifida by pairing adults with community social workers to assess barriers and action steps related to participating in vocational training and employment; increase knowledge about vocational training resources and ABLE accounts; and to facilitate linkages to ABLE accounts and advocates specializing in Medicaid and Supplemental Security Income (SSI).
ABLE National Resource Center - (ANRC) is a collaborative whose supporters share the goal of accelerating the design and availability of ABLE accounts for the benefit of individuals with disabilities and their families.
Illinois ABLE - The Illinois ABLE program is a tax-advantaged investment program that provides persons with blindness or disabilities the option to save for disability-related expenses without putting their federal means tested benefits at risk.

American Academy of Pediatrics - Health Care Transition Support Videos for People Impacted by Spina Bifida
Provides different videos highlighting transition resources for individuals with spina bifida. Videos are available in English and Spanish.

Americans with Disabilities Act Disability and Business Technical Assistance Centers (DBTACs)
Provides information, referral, technical assistance, and training on the ADA.
800-949-4232

The ARC of IL
20901 LaGrange Road Suite #209
Frankfort, IL 60423
815-464-1832
Committed to empowering persons with disabilities to achieve full participation in community life through informed choices. They have a Technology Program that helps fund assistive technology devices for people with disabilities. 

Aspire (Eamon Shannon Center HQ)
1815 South Wolf Road
Hillside, IL 60162
708.236.0979
Aspire’s mission is to support the successes of children and adults with developmental disabilities, strengthen their families and build embracing communities

Bloomington Normal Area Community Resource List

Canine Companions for Independence
They are a national organization with a chapter in Chicagoland.
Founded in 1975, Canine Companions for Independence® is a non-profit organization that enhances the lives of people with disabilities by providing highly trained assistance dogs and ongoing support to ensure quality partnerships.

Carbondale Area Community Resource List  

Chambanamoms.com
An online list of some of the resources for young children with special needs in the Champaign/Urbana area. Many of the organizations were recommended by local families who have children with special needs.

Champaign Area Community Resource List   

Community Support Services
9021 Ogden Avenue
Brookfield, IL 60513
708.354.4547
Initiates, provides and promotes services for people with intellectual/developmental disabilities and their families, within their communities, in order to strengthen their independence, self-esteem, and ability to participate in and contribute to community life. For residents of western Cook or eastern DuPage counties.

Council for Exceptional Children, Division on Career Development and Transition
Promotes efforts to improve the quality of and access to career/vocational and transitional services, increases the role of education in career development and transition goals, and influences policies affecting services for persons with disabilities.

DuPage County Community Resource Information System (CRIS)
800.942.9412
An online database of community resources in DuPage County.

Hydrocephalus Association
4340 East West Highway, Suite 905
Bethesda, MD 20814
(888) 598-3789
HA gathers together resources and connects individuals to larger communities that can provide support and understanding.  They provide an online resource library and common space for those living with hydrocephalus.

Illinois Dept of Human Services Resource List

Jewish Child & Family Services of Chicago
Central Office  - 216 W. Jackson Blvd, Suite 800
Chicago, IL 60606
Phone: 855.275.5237
Services for People with Disabilities & their families.

Naperville List of Services and Resources for People with Disabilities

NeuroRestorative
Locations in Carbondale, Des Plaines, Mount Prospect, and Palatine
Phone: 800-743-6802
NeuroRestorative is a leading provider of subacute and post-acute rehabilitation services for people of all ages with brain, spinal cord and medically complex injuries, illnesses and other challenges.

OSF HealthCare Care Navigator for Children and Adults with Spina Bifida
800 NE Glen Oak Avenue
Peoria, Illinois 61603
Phone: (309) 624-4000
Information about available services and programs for people with spina bifida and their families in the Peoria area.

People in Need Forum Online Resource Directory for McHenry County (Click here for the directory.)

Quad Cities Area Community Resource List

Rockford Area Community Resource List

Schaumburg Township Disability Services
Schaumburg, IL
(847) 884-0030
A variety of services for people with disabilities who live in Schaumburg Township. Check out the website for details.

Shirley Ryan AbilityLab: Life Center
355 E. Erie Street
Chicago IL 60611
312-238-5433
The Henry B. Betts LIFE Center is a multimedia education center that provides opportunities for Learning, Innovation, Family and Empowerment for people with disabilities, their families, health professionals and the community. Click here for a list or financial resources for people with disabilities that they have put together.

Springfield Area Community Resource List

UCPSeguin of Greater Chicago
Main Office -
3100 South Central Avenue
Cicero, IL 60804-3987
708.863.3803
Provides a variety of services for adults and children with disabilities in the Chicagoland area.

Updated 10/26/2023