Kentucky

Kentucky

ADA Center
Southeast ADA Center
1419 Mayson Street NE
Atlanta, GA, 30324
(800) 949-4232 (V/TTY)
(404) 541-9001 (V/TTY)
ADAsoutheast@law.syr.edu
http://www.adasoutheast.org


Assistive Technology
Kentucky Assistive Technology Service (KATS) Network
Charles McDowell Center
200 Juneau Drive – Ste 200
Louisville KY, 40234
(800) 327-5287 (V/TTY, in KY)
(502) 429-4484 (V/TTY);
http://www.katsnet.org


Autism
Autism Society of the Bluegrass
1405 E. Burnett Ave
Louisville, KY 40217
(502) 852-4631
(800) 334-8635
http://www.asbg.org


Kentucky Autism Training Center
College of Education and Human Development
University of Louisville
1405 E. Burnett Ave
Louisville, KY 40217
(502) 852-4631
(800) 334-8635
www.louisville.edu/education/kyautismtraining


CHIP
(health care for low-income uninsured children)
KCHIP
Cabinet for Health and Family Services
Office of the Secretary
275 E. Main Street
Frankfort, KY, 40621
(877) 524-4718
(800) 662-5397 (Spanish)
(877) 524-4719 (TTY)
http://www.kidshealth.ky.gov/


D D Council
Commonwealth Council on Developmental Disabilities
32 Fountain Place
Frankfort, KY, 40601
(877) 367-5332
https://councilondd.org/


Developmental Disabilities
The Council on Developmental Disabilities
1151 So. Fourth St
Louisville, KY 40202
502-584-1239
info@councilondd.org
www.councilondd.org


Early Intervention
Kentucky Cabinet for Health and
Human Services
312 Whittington Parkway
Louisville, KY, 40222
(502) 429-1249
(800) 442-0087
http://chfs.ky.gov/


Epilepsy
Epilepsy Foundation of Kentuckiana
982 Eastern Parkway
Louisville, KY, 40217
(866) 275-1078
(502) 637-4440
http://www.efky.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 Kentucky
706 E. Main, Suite A
Frankfort, KY, 40601
(800) 281-1272
(502) 875-5225
arcofky@aol.com
http://arcofky.org


Learning Disabilities
Learning Disabilities Association of Kentucky, Inc.
2210 Goldsmith Lane, Suite 118
Louisville, KY, 40218
(502) 473-1256
LDAofky@yahoo.com
http://www.LDAofky.org


Mediation
Office of Teaching and Learning
Division of Learning Services
300 Sower Blvd., 5th floor
Frankfort, KY, 40601
(502) 564-4970
http://www.education.ky.gov


Mental Health
Department for Mental Health/Developmental Disabilities and Addiction Services
Cabinet for Health and Family Services
100 Fair Oaks Lane, 4E-B
Frankfort, KY, 40621-0001
(502) 564-4527
http://dbhdid.ky.gov/kdbhdid/default.aspx


Children’s Behavioral Health and Recovery Services
275 E. Main St. 4WG
Frankfort, KY, 40621
(502) 564-4456
beth.jordan@ky.gov
http://dbhdid.ky.gov/dbh/children.aspx


Mental Health America of Kentucky
120 Sears Avenue, Suite 213
Louisville, KY, 40207
(888) 705-0463
(502) 893-0460
mhaky@mhaky.org
http://www.mhaky.org


Mental Health Association of Northern Kentucky
605 Madison Avenue
Covington, KY, 41011
(859) 431-1077
mhanky@mhanky.org
http://www.mhanky.org


NAMI Kentucky
Main Office
2441 S Hwy. 27
Somerset, KY 42501
(606) 677-4066
(800) 257-5081
http://namiky.org


Kentucky Mental Health Coalition
120 Sears Avenue, Suite 212
Louisville, KY, 40207
(502) 894-0222
actionoffice@bellsouth.net
http://www.advocacyaction.net


Kentucky Partnership for Families and Children
207 Holmes Street, First Floor
Frankfort, KY, 40601
(800) 369-0533
(502) 875-1320
https://kypartnership.org/


Mental Health – Youth
Kentucky Cabinet for Health and Family Services
275 E. Main St.
Frankfort, KY, 40621
(502) 564-4456
beth.jordan@ky.gov
http://dbhdid.ky.gov/dbh/children.aspx


Parent Organizations
Kentucky Health and Family Services
Parent Advocacy
275 E. Main St.
Frankfort, KY, 40621
(800) 372-2973
https://councilondd.org/cms-view-page.php?page=family-support


Kentucky Parent Teacher Association (PTA)
P.O. Box 654
Frankfort, KY, 40602-0654
(502) 226-6607
KentuckyPTA@bellsouth.net
http://www.kypta.org


Parent Training and Information Center (PTI)
Kentucky Special Parent Involvement Network (KY-SPIN)
801 N. 29th St
Paducah, KY 42001
270-444-9687
http://www.kyspin.com


Preschool, Disabilities
Division of Early Childhood Development
Department of Education
500 Mero Street, Capital Plaza Tower
Frankfort, KY, 40601
(502) 564-8341
http:// www.education.ky.gov


Protection & Advocacy
Kentucky Protection and Advocacy
100 Fair Oaks Lane, Third Floor
Frankfort, KY, 40601
(800) 372-2988 (V/TTY in KY)
(502) 564-2967
http://kypa.net/


State Coordinator for the Americans with Disabilities Act
500 Mero Street
Capital Plaza Tower, 2nd Floor
Frankfort, KY, 40601
(502) 564-3850
norbj.ryan@ky.gov
http://ada.ky.gov


Relay Services
(800) 648-6057 (V)
(800) 648-6056 (TTY/ASCII); 711 (TTY)
(888) 244-6111 (Speech to Speech)


Special Education
Division of Learning Services
Kentucky Department of Education
500 Mero Street
Frankfort, KY, 40601
(502) 564-4970
http://education.ky.gov/specialed/excep/Pages/default.aspx


Special Format Library
Kentucky Library for the Blind and Physically Handicapped
300 Coffee Tree Road
PO Box 537
Frankfort, KY, 40602-0818
(800) 372-2968
(502) 564-8300
KTBL.Mail@ky.gov
www.kdla.ky.gov/librarians/talkingbook/pages/default.aspx


Special Health Care Needs
Commission for Children with Special Health Care Needs
310 Whittington Parkway, Suite 200
Louisville, KY, 40222
(502) 429-4430
(800) 232-1160
CCSHCNWebPage@ky.gov
www.chs.ky.gov/ccshcn


Speech, Language, and Hearing
Kentucky Speech-Language-Hearing Association
838 East High Street, Suite 263
Lexington, KY, 40502
(800) 837-2446
kshaoffice@ksha.info
http://ksha.info


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://kentucky.gov/


Transition Services
Office of Teaching & Learning
Division of Learning Services
300 Sower Blvd., 5th floor
Frankfort, KY, 40601
(502) 564-4970
http://education.ky.gov/


UCEDD
University of Kentucky UCE
Human Development Institute
Office of the Vice President for Research
University of Kentucky
126 Mineral Industries Building
Lexington, KY, 40506-0051
(859) 257-1714
http://www.hdi.uky.edu


Vocational Rehabilitation
Office of Vocational Rehabilitation
Education and Workforce Development Cabinet
Department of Workforce Investment
275 East Main St, Mail Stop 2E-K
Frankfort, KY 40621
(502) 564-4440
WFD.VOCREHAB@ky.gov
http://ovr.ky.gov


Office of Career and Technical Education
300 Sower Blvd., 5th floor
Frankfort, KY, 40601
(502) 564-4286
http://www.education.ky.gov/CTE


Easter Seals Kentucky
2050 Versailles Road
Lexington, KY, 40504
800) 888-5377
(859) 254-5701
http://www.cardinalhill.org


Kentucky Disabilities Coalition
859 E. Main St. A
Frankfort, KY, 40601
(502) 875-1871



United Way 2-1-1
100 Midland Ave, Ste 300
Lexington, KY 40508
(859) 233-4460
http://www.uwbg.org


Kentucky Education Rights Center, Inc.
256 Abbey Rd.
Versailles, KY, 40383
(859) 983-9222


VSA arts of Kentucky
515 E. 10th Ave.
Bowling Green, KY 42101
(207) 781-0872
director@vsartsky.org
http://vsartsky.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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