Illinois

ILLINOIS

ADA Center
Great Lakes ADA Center
University of Illinois at Chicago
Institute on Disability & Human Development (MC 728)
1640 West Roosevelt Road, Room 405
Chicago, IL, 60608
(800) 949-4232 (V/TTY)
(312) 413-1407 (V/TTY)
adata@adagreatlakes.org
http://www.adagreatlakes.org


Assistive Technology
Illinois Assistive Technology Program
1 W. Old State Capitol Plaza, Suite 100
Springfield, IL, 62701
(800) 852-5110 (V/TTY, in IL only)
(217) 522-7985 (V/TTY)
wgunther@iltech.org
http://www.iltech.org


Autism
Illinois Center for Autism
548 South Ruby Lane
Fairview Heights, IL, 62208
(618) 398-7500
info@illinoiscenterforautism.org
https://illinoiscenterforautism.org


CHIP
(health care for low-income uninsured children)
Illinois All Kids
(800) 843-6154
https://www.insurekidsnow.gov


D D Council
Illinois Council on Developmental Disabilities
830 S. Spring Street
Springfield, IL 62704
(217) 782-9696 (V/TTY)
http://www.state.il.us/agency/icdd/


Developmental Disabilities
Division of Developmental Disabilities
Department of Human Services
319 E. Madison, Suite 4N
Springfield, IL, 62701
(217) 524-7065
http://www.state.il.us/agency/dhs


Early Intervention
Bureau of Early Intervention
Department of Human Services
222 S. College, 2nd Floor
Springfield, IL, 62704
(800) 323-4769 (in IL only)
(217) 782-1981
janet.gully@illinois.gov
http://www.dhs.state.il.us/ei


Epilepsy
Epilepsy Foundation Greater Southern Illinois
3515 N Belt W
Belleville, IL, 62226-5944
(866) 848-0472
(618) 236-2181
https://www.epilepsy.com/greater-southern-illinois


Epilepsy Foundation North/Central Illinois
321 W State St #208
Rockford, IL, 61101-1119
(800) 221-2689
(815) 964-2689
https://www.epilepsy.com/north-central-illinois-iowa-nebraska


Epilepsy Foundation of Greater Chicago
17 N. State, Suite 650
Chicago, IL, 60602
(800) 273-6027
(312) 939-8622
(312) 628-4770(TTY)
info@epilepsychicago.org
http://www.epilepsychicago.org


Independent Living
To find out the contact information for the Statewide
Independent Living Council (SILC) in your state, contact:
Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000
Houston, TX, 77019
(713) 520-0232 (V)
(713) 520-5136 (TTY)
ilru@ilru.org
http://www.ilru.org


To find out the contact information for centers for independent living (CILs) in your state, contact:
National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0334 (V)
(202) 207-0340 (TTY)
ncil@ncil.org
http://www.ncil.org


Intellectual & Developmental Disabilities
The Arc of Illinois
18207-A Dixie Highway
Homewood, IL , 60430
(708) 206-1930
tony@thearcofil.org
http://www.thearcofil.org


Learning Disabilities
Learning Disabilities Association of Illinois
10101 S. Roberts Road, Suite 205
Palos Hills, IL, 60465
(708) 430-7532
LDAOFIL@ameritech.net
http://ldaillinois.org/


Mediation
Illinois State Board of Education
Division of Special Education Services
Springfield Office
(217) 782-5589
Chicago Office
(312) 814-5560
https://www.isbe.net


Mental Health
Division of Mental Health
Department of Human Services
110 S Grand Ave E
Springfield, IL 62762
(800)-843-6154
401 S Clinton St
Chicago, IL 60607
(800)-843-6154
http://www.dhs.state.il.us/page.aspx?item=33007


Mental Health America of Illinois
70 East Lake Street, Suite 900
Chicago , IL, 60601
(312) 368-9070
cwoz@mhai.org
http://www.mhai.org


NAMI Illinois, National Alliance on Mental Illness
218 W. Lawrence
Springfield, IL, 62704
(800) 346-4572
(217) 522-1403
namiil@sbcglobal.net
https://namiillinois.org/


Mental Health – Youth
Division of Mental Health
Department of Human Services
Springfield
(800) 843-6154
Chicago
(800) 843-6154
http://www.dhs.state.il.us/page.aspx?item=29735


Parent Organizations
Family Support Network of Illinois
5739 W. Martindale Lane
Peoria, IL, 61615-9669
(309) 693-8981
fsn@familysupportnetwork.org
http://www.familysupportnetwork.org/


Parent Teacher Association (PTA)
Illinois Congress of Parents and Teachers
901 S. Spring Street
Springfield, IL, 62704-2790
(800) 877-9617
(217) 528-9617
il_office@pta.org
http://www.illinoispta.org


Parent Training and Information Center (PTI)
Family Resource Center on Disabilities
20 E. Jackson Boulevard, Room 300
Chicago, IL, 60604
(800) 952-4199 (In IL)
(312) 939-3513 (V)
(312) 939-3519 (TDD)
info@frcd.org
http://www.frcd.org


Parent Training and Information Center (PTI)
Family Matters
Parent Training and Information Center
1901 S. 4th Street, Suite 209
Effingham, IL, 62401
(866) 436-7842
(217) 347-5428 (V/TTY)
deinhorn@fmptic.org; info@fmptic.org
http://www.fmptic.org


Parent-To-Parent
Family Resource Center on Disabilities
20 E. Jackson Boulevard, Suite 300
Chicago, IL, 60604
(800) 952-4199 (In IL)
(312) 939-3513
info@frcd.org
http://www.frcd.org


Preschool, Disabilities
Division of Early Childhood Education
100 N. First Street, C-428
Springfield, IL, 62777-0001
(217) 524-4835
hhenders@isbe.net
http://www.isbe.net


Protection & Advocacy
Equip for Equality, Inc.
20 N. Michigan, Suite 300
Chicago, IL 60602
(800) 537-2632 (V)
(312) 341-0022 (V)
(800) 610-2779 (TTY)
contactus@equipforequality.org
http://www.equipforequality.org


For a listing of resource centers that provide legal or advocacy services at no or low cost, visit: http://www.iser.com/CAadvocacy.html


Relay Services
(800) 526-0857 (V)
(800) 526-0844 (TTY); 711 (TTY)
(877) 526-6690 (Speech to Speech)


Special Education
Illinois State Board of Education
Kate Anderson Foley, Ph.D.
Assistant Superintendent/State Director of Special Education
(217)-782-4870- Springfield
(312)-814-5560- Chicago
https://www.isbe.net/Pages/Special-Education-Programs.aspx


Special Format Library
Illinois State Library
Talking Book and Braille Service
401 E. Washington
Springfield, IL, 62701
(800) 665-5576 ext. 5 (in IL)
(217) 782-9435
(888) 261-5280 (TTY)
sruda@ilsos.net
http://www.ilbph.org


Special Health Care Needs
Division of Specialized Care for Children
University of Illinois at Chicago
3135 Old Jacksonville Road
Springfield, IL, 62704-6488
(217) 558-2350
http://www.uic.edu/hsc/dscc/


Speech, Language, and Hearing
Illinois Speech-Language-Hearing Association
35 East Wacker Dr., Suite 850
Chicago, IL 60601-2106
(312) 644-0828
ckeillor@bostrom.com
http://www.ishail.org


State Web Site
Connect with your state’s official website to find all manner of state agencies and information, including how to contact your governor and/or your representatives in the Senate and House:
http://www.state.il.us/


Technical Support to Schools
Midwest PBiS Network
2900 Ogden Ave
Lisle, IL 60532
(630) 620-9032
support@midwestpbis.org
http://www.midwestpbis.org/


On Positive Behavior Interventions and Supports
Illinois Statewide Technical Assistance Center
PBIS Network
Chicago: (312) 814-2220
Springfield: (217) 782-4321
https://www.isbe.net/Pages/Positive-Behavioral-Intervention.aspx


Transition Services
Illinois State Board of Education
Springfield
(217) 782-4321/(866) 262-6663
(312) 814-2220
https://www.isbe.net/Pages/Special-Education-Indicator-13.aspx


UCEDD
Institute on Disability and Human Development (M/C 626)
Department of Disability and Human Development
University of Illinois at Chicago
1640 W. Roosevelt Road
Chicago, IL, 60608
(312) 413-1647
dhd@uic.edu
http://ahs.uic.edu/disability-human-development/


Vocational Education, Disabilities
Illinois State Board of Education
100 N. First Street
Springfield, IL, 62777-0001
(217) 782-4620
http://www.isbe.net


Division of Rehabilitation Services
Department of Human Services
Check website for local offices
http://www.dhs.state.il.us/page.aspx?item=29736


Pathways Awareness
150 N. Michigan Avenue, Suite 2100
Chicago, IL, 60601
(800) 955-2445
(800) 326-8154 (TTY)
friends@pathways.org
http://www.pathways.org



Variety – The Children’s Charity of Illinois
1001 W 75th St. #153
Woodridge, IL 60517
501c3 #36-1908475
312-822-0660
info@varietyofillinois.org



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Newborn Genetic Screenings

The Power of Newborn Genetic Screenings: How Newborn Genetic Screenings Can Change the Diagnosis

By Penelope Gatlin • 05 Oct, 2023
By Penelope Gatlin October 2023 When our son was born in 2012, he was hypotonic, severely jaundiced, had feeding difficulties and features such as epicanthic folds and small low set ears. We were told immediately that doctors had suspicions of a genetic syndrome. At that time, genetic testing was limited and once abnormal karyotype, Trisomy 21, and Fragile X were ruled out, we left the hospital with an 8 day old and no diagnosis. While no testing was available at that time to identify the ultra-rare syndrome my child had, because it wouldn’t even be identified until 4 years later, I can only imagine the difference it would have made to our journey to have such an answer sooner. Instead, we were unprepared and actually unaware that just because a diagnosis hadn’t been made then that it didn’t mean there wasn’t in fact a rare disease present. Instead, we dealt with issues as they came and worried and wondered what would be next. From feeding issues and reflux and constipation, to low muscle tone and delayed walking, to speech delay, social and emotional delays, toileting delays, diagnoses of developmental delay, anxiety, situational mutism, sensory processing disorder, and autism, until finally genetic testing that revealed the diagnosis that we’d waited 7 years to find out. While receiving a diagnosis can seem scary, not having an answer but knowing there must be one is even more so. In 2019, the day I clicked onto the portal to see the test results, the largest word on the page was POSITIVE. My heart stopped for a second. For the first time, I read the words “Okur-Chung Neurodevelopmental Disorder.” A roller coaster of emotions ensued, including sadness that we hadn’t known this from birth because it would have made us as parents more prepared, and given us more understanding about what might arise next. Relief that we had an answer, grateful that this syndrome had been identified and that he was among one of the first hundred diagnosed with it in the world, and glad we had the privilege to have access to the testing. Excitement that we can participate in future research. Fright that there’s so much we don’t know about OCNDS, and happiness that there is something that we do. A feeling that we are no longer shooting in the dark and have a small but supportive community to rely on and learn from. I am hopeful that one day, all newborns with features like my child will be tested at birth, so parents can have access to the answers, support, and interventions and therapies that can best help their child as soon as possible.
Autism Diagnosis

Why I Should Have Gotten the Autism Diagnosis for My Child Early On (or Why I Did Not)

By Terri Jordan • 23 Aug, 2023
For 16 years, my child displayed numerous symptoms that left us searching for answers, but a genetic diagnosis remained elusive. I considered having my child evaluated for autism to shed light on their situation. However, when I reached out to teachers, doctors, and therapists, I received frustrating responses: “Your child is too friendly to be autistic.” This statement made me doubt the possibility of autism because my child was sociable. “Your child can transition from one activity to another – they are not autistic.” Hearing this, I questioned whether my child’s ability to shift activities invalidated the need for an autism evaluation. “Your child can look me in the eye and answer questions – they are not autistic.” Observations like this made me second-guess the idea of autism, even though my child faced various challenges. “Getting a diagnosis that does not apply to your child would be a big waste of money.” Despite my persistent concerns, this cautionary advice about the evaluation costs left me hesitant. We finally pursued an evaluation when my son turned 20, and it confirmed that he is indeed on the autism spectrum (severe side). Looking back, I regret not taking this step sooner. I should have pursued the autism diagnosis before we received the genetic diagnosis. There are several benefits we could have gained as a family if we had pursued an early diagnosis: “Early Support Is Crucial:” I now realize that early intervention could profoundly impact my child’s development. We could have accessed the right services and therapies much earlier with a diagnosis. “Understanding My Child Better:” I struggled to comprehend my child’s behaviors and communication difficulties. An earlier diagnosis could have provided insights into their unique needs and thought processes. The education could also help me explain how to react to my child’s behavior to family members. “Tailored Guidance and Resources:” A diagnosis could have opened doors to specialized resources and guidance, enabling me to provide the best possible support for my child. “Connecting with Others:” Being part of the autism community might have connected us with other parents who understand our experiences. Sharing and learning from each other could have been invaluable. “Planning for the Future:” Knowing more about my child’s strengths and challenges could have helped me better plan their future, including education, career, and overall well-being. Depending on your location, many states offer funding and support if your child has an autism diagnosis. I wish I listened to my voice instead of being swayed by experts who didn’t fully understand my child’s situation. Ultimately, I know this decision is significant, requiring careful consideration by parents. Looking back, I wish I had trusted my instincts and sought an evaluation sooner to improve my child’s life.
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