Indiana

INDIANA

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)
http://www.adagreatlakes.org


Assistive Technology
Easter Seals
INDATA Project
Assistive Technology Services
4740 Kingsway Dr
Indianapolis, IN, 46205
(317) 466-2013
(888) 466-1314
tech@eastersealscrossroads.org
http://www.eastersealstech.com/about/the-indiana-assistive-technology-indata-project/


Autism
Autism Society of Indiana
3951 N. Meridian St, Ste 220
Inianapolis, IN, 46208
(800) 609-8449
info@inautism.org
http://www.inautism.org


Indiana Resource Center for Autism (IRCA)
Indiana Institute on Disability and Community
Indiana’s University Center for Excellence on Disabilities
Indiana University
1905 North Range Road
Bloomington, IN, 47408-2696
(812) 855-6508
(812) 855-9396 (TTY)
http://www.iidc.indiana.edu/irca


CHIP
(health care for low-income uninsured children)
Hoosier Healthwise
Children’s Health Insurance Program
Indiana Family and Social Services Administration
402 W. Washington Street, Room 382, MS07
Indianapolis, IN, 46204-2739
(800) 889-9949
https://www.insurekidsnow.gov/coverage/in/index.html


D D Council
Governor’s Council for People with Disabilities
402 W. Washington St.
Indianapolis, IN, 46204
(317) 332-7770
GPCPD@gpcpd.org
http://www.IN.gov/gpcpd/


Developmental Disabilities
Family and Social Services Administration
402 W Washington St., #W451
PO Box 7083, MS26
Indianapolis, IN, 46207-7083
(800) 545-7763
http://www.in.gov/fssa/ddrs/2639.htm


Early Intervention
Indiana Family and Social Services Administration
Division of Disability and Rehabilitative Services
Bureau of Child Development Services (BCDS)
402 W. Washington Street, Room W-386
Indianapolis, IN, 46204
(800) 545-7763
FirstStepsWeb@fssa.in.gov
http://www.in.gov/fssa/ddrs/4655.htm


Epilepsy
Epilepsy Foundation of Indiana
3901 W. 86th Street, Suite 380
Indianapolis, IN, 46268
(800) 526-6618
(317) 876-0600
info@indianaepilepsyfoundation.org
http://indianaepilepsyfoundation.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 Indiana
107 N. Pennsylvania, Suite 800
Indianapolis, IN, 46204
(317) 977-2375
http://www.arcind.org


Learning Disabilities
Learning Disabilities Association of Indiana
176 W. Logan St., #158
Noblesville, IN 46060
useemlda@gmail.com
https://ldaamerica.org/lda-chapters/indiana/


Mediation
Indiana Department of Education
Center for Exceptional Learners
115 Washington Street – South Tower, Ste 600
Indianapolis, IN, 46204
(317) 232-0570
specialeducation@doe.in.gov
www.doe.in.gov/specialed/special-education-due-process


Mental Health
Division of Mental Health and Addiction
Family and Social Services Administration
402 W. Washington Street, Room W353
Indianapolis, IN, 46204-2739
(317) 232-7845
http://www.IN.gov/fssa


Mental Health America in Indiana
1431 N. Delaware Street
Indianapolis, IN, 46202
(800) 555-6424 (in IN only)
(317) 638-3501
http://www.mhai.net


NAMI Indiana, National Alliance on Mental Illness
P.O. Box 22697
Indianapolis, IN, 46222-0697
(800) 677-6442
(317) 925-9399
info@namiindiana.org
http://www.namiindiana.org


Mental Health – Youth
Children’s Services Bureau
Division of Mental Health and Addiction
Family and Social Services Administration
402 W. Washington Street, Room W353
Indianapolis, IN, 46204-2772
(317) 232-7934
kevin.moore@fssa.in.gov
http://www.IN.gov/fssa


Parent Organizations
Parent Teacher Association (PTA)
Indiana Congress of Parents and Teachers, Inc.
2525 N. Shadeland Avenue, D-4
Indianapolis, IN, 46219-1787
(317) 357-5881
info@indianapta.org
http://www.indianapta.org


Parent Training and Information Center (PTI)
IN*SOURCE
1703 S. Ironwood Drive
South Bend, IN, 46613
(800) 332-4433 (In IN)
(574) 234-7101 (V/TTY);
insource@insource.org
http://www.insource.org


P2P at About Special Kids, Inc.
7172 Graham Road, Suite 100
Indianapolis, IN, 46250
(317) 257-8683
(800) 964-4746
familynetw@aboutspecialkids.org
http://www.aboutspecialkids.org


Family Voices Indiana
4060 W 400 S
Lebanon, IN, 46052
(317) 944-8982
info@fvindiana.org
http://www.fvindiana.org


Preschool, Disabilities
Indiana Department of Education
South Tower, Suite 600
115 W. Washington St.
Indianapolis, IN, 46204
(317) 232-0570
(877) 851-4106
specialeducation@doe.in.gov
http://www.doe.in.gov/specialed


Protection & Advocacy
Indiana Disability Rights
Indiana Protection and Advocacy Services
4701 N. Keystone Ave., Suite 222
Indianapolis, IN, 46204
(317) 722-5555
(800) 622-4845
info@indianadisabilityrights.org
http://www.in.gov/idr/2523.htm


Partners in Policymaking
c/o Governor’s Council for People with Disabilities
150 W. Market Street, Suite 628
Indianapolis, IN, 46204
(317) 232-7770
PIP@gpcpd.org
http://www.in.gov/gpcpd/


Relay Services
(800) 743-3333 (V)
(800) 743-3333 (TTY); 711 (TTY)
(877) 743-8231 (Speech to Speech)

Special Education
Indiana Department of Education
Division of Exceptional Learners
115 W. Washington St – South Tower, Ste 600
Indianapolis, IN, 46204-2798
(317) 232-0570
specialeducation@doe.in.gov
http://www.doe.in.gov/specialed


Special Format Library
Indiana State Library
Talking Books
140 N. Senate Avenue
Indianapolis, IN, 46204
(800) 622-4970
(317) 232-3684
(317) 232-7763 (TTY)
lbph@library.in.gov
http://www.in.gov/library/tbbl.htm


Special Health Care Needs
Maternal & Children’s Special Health Care Services Division
Indiana State Department of Health
2 N. Meridian Street, Suite 7B
Indianapolis, IN, 46204
(800) 475-1355
(317) 233-1351
http://www.in.gov/isdh/19571.htm


Speech, Language, and Hearing
Indiana Speech-Language-Hearing Association, ISHA
3125 Dandy Trail, Ste 110,
Indianapolis, IN 46214
(317) 916-4146
http://www.islha.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.in.gov


Transition Services
Center on Community Living and Careers
Indiana Institute on Disability and Community
University Center for Excellence
Indiana University
2853 E. Tenth Street
Bloomington, IN, 47408
(812) 855-6508
tgrossi@indiana.edu
http://www.iidc.indiana.edu/


UCEDD
Indiana Institute on Disability and Community
Indiana University
1905 North Range Road
Bloomington, IN, 47408-2696
(812) 855-6508
(812) 855-9396 (TTY)
iidc@indiana.edu
http://www.iidc.indiana.edu


Vocational Education
Department of Career and Technical Education
10 N. Senate Avenue, Room 212
Indianapolis, IN, 46204-2277
(317) 234-4106
cguidry@dwd.in.gov
www.in.gov/dwd/2415.htm


Bureau of Rehabilitation Services
Indiana Family and Social Services Administration
Division of Disability and Rehabilitative Services
402 W. Washington Street, Room W453
P.O. Box 7083
Indianapolis, IN, 46207-7083
(800) 545-7763
(317) 234-4475
michael.hedden@fssa.in.gov
http://www.IN.gov/fssa/



Easter Seals Wayne/Union Counties
4740 Kingsway Dr.
Indianapolis, IN 46205
(317) 466-1000
http://eastersealscrossroads.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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