General Information and Programs

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Spina Bifida Association
1600 Wilson Blvd, Suite 800
Arlington, VA 22209
800-621-3141, 202-944-3285

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

Community Support Services
9021 Ogden Avenue
Brookfield, IL 60513
Chicago IL 60611
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.

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 Prioritization of Urgency of Need for Services (PUNS) database
Developmental Disabilities Hotline - 1-888-DD-PLANS
A database of Illinois infants, children, adolescents, and adults with developmental disabilities who have needs for developmental disability services or supports. The PUNS database helps identify and plan for your immediate needs, through the IL Department of Human Services.

National Council on Independent Living
2013 H St. NW 6th Floor Washington, D.C. 20006

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

Society of Urologic Nurses and Associates
Patient information fact sheets in English and Spanish. For more information, contact Chicago Metro SUNA

Shirley Ryan AbilityLab: Life Center
355 E. Erie Street
Chicago IL 60611
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.

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On-line and Social Media Resources

Click here for a list of apps and websites that may be helpful in managing Activities of Daily Living (ADLs).

Care Pages
CarePages are free, easy-to-use Web pages that help family and friends communicate when a loved one is receiving care. It takes just a few minutes to create a CarePage, share it with friends and family, and build a community of support.

Families of Lurie Children's Spina Bifida Clinic
A private Facebook group administered by families, for other families.        

I Live with a Disability
A social networking website for people with disabilities.

An online supportive community for people with disabilities.

SIBS: Supporting Illinois Brothers and Sisters
SIBS is a group that supports brothers and sisters of all ages in Illinois that have a sibling with a disability.

Sibling Support Project
This website has a directory of "sibshops" in Illinois.

Spina Bifida Room on Facebook
This private Facebook group is a place to connect with others who have Spina Bifida. Posts must pertain to Spina Bifida. *There are many other spina bifida related Facebook groups, just type 'spina bifida' in the search box and click on 'groups.'*

Their goal is to help parents of children living with learning and attention issues.  They provide a lot of online resources to help your child succeed in school, social interactions and everyday life.  


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