Kansas

Kansas

ADA Center
Great Plains ADA Center

100 Corporate Lake Drive
Columbia, MO, 65203
adacenter@missouri.edu

http://www.gpadacenter.org/


Assistive Technology
Assistive Technology for Kansans Project

(campuses in Lawrence, Kansas City, Overland Park, Wichita and Salina)
1450 Jayhawk Blvd.
Lawrence, KS, 66045

http://atk.ku.edu/


Autism
Autism Society of the Heartland

P.O. Box 860984
Shawnee, KS, 66286

http://www.asaheartland.org


CHIP
(Health care for low-income uninsured children)

(785) 368-1515/(800) 792-4884

http://www.kdheks.gov/hcf/Medicaid/about.html


D D Council
Kansas Council on Developmental Disabilities

Docking State Office Building, Room 141
915 S.W. Harrison Street
Topeka, KS, 66612-1570

http://www.kcdd.org


Developmental Disabilities
Department for Children and Families

Docking State Office Building
915 SW Harrison Street, 9th Floor
Topeka, KS, 66612-1570

http://www.dcf.ks.gov/Services/RS/Pages/default.aspx


Early Intervention
Children’s Developmental Services
Kansas Department of Health and Environment

1000 SW Jackson Street, Suite 220
Topeka, KS, 66612-1274

http://www.kdheks.gov/cds/index.html


Epilepsy
Epilepsy Foundation of Kansas and Western Missouri

St. Louis, MO
(314) 781-4949/(800) 264-6970
Kansas City, MO
(816) 444-2800/(844) 415-7152
epilepsy@efmk.org

https://efmk.org/


Independent Living
ILRU

(713) 520-0232
Check website or email for local resources
ilru@ilru.org

http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/KS


National Council on Independent Living
(877) 525-3400
Check website or email for local resources

http://www.ncil.org/


Intellectual & Developmental Disabilities
TARC

2701 S.W. Randolph
Topeka, KS, 66611

http://www.tarcinc.org


Learning Disabilities
Learning Disabilities Association of Kansas

2618 SW Arvonia Place
Topeka, KS 66614

http://ldaamerica.org/lda-chapters/kansas/


Mental Health
Mental Health Association of South Central Kansas

555 N. Woodlawn, Suite 3105
Wichita, KS, 67208

http://www.mhasck.org


NAMI Kansas
501 SW Jackson St., Suite 400
Topeka, KS 66601
(800) 539-2660
info@namikansas.org

https://namikansas.org/


Mediation
Kansas State Department of Education
Special Education Services

900 SW Jackson St.
Topeka, KS 66612
(785) 296-7454/(800) 203-9462

http://www.ksde.org/Agency/Division-of-Learning-Services/Early-Childhood-Special-Education-and-Title-Services/Special-Education/Legal-Special-Education/Dispute-Resolution


Parent Organizations
Parent Teacher Association (PTA)
Kansas Congress of Parents and Teachers

715 SW 10th St.
Topeka, KS, 66612-1686


http://www.kansas-pta.org/

Parent Training and Information Center (PTI)
Families Together, Inc.

3033 W. Second, Suite 106
Wichita, KS, 67203

http://www.familiestogetherinc.org/


Partners in Policymaking
Kansas Developmental Disabilities Council

Docking State Office Building, Room 141
915 SW Harrison Street
Topeka, KS, 66612-1570

http://www.kcdd.org/


Preschool, Disabilities
Early Childhood
Kansas State Department of Education

900 SW Jackson St.
Topeka, KS, 66612-1182

http://www.ksde.org/Agency/Division-of-Learning-Services/Early-Childhood-Special-Education-and-Title-Services/Early-Childhood


Protection & Advocacy
Disability Rights Center of Kansas

635 SW Harrison Street, Suite 100
Topeka, KS, 66603

http://www.drckansas.org/


Relay Services
(800) 766-3777 (V)
(800) 766-3777 (TTY); 711 (TTY)
(866) 305-1344 (Speech to Speech)


Special Education
Special Education Services
Kansas State Department of Education

900 SW Jackson St.
Topeka, KS, 66612-1182

http://www.ksde.org/Agency/Division-of-Learning-Services/Early-Childhood-Special-Education-and-Title-Services/Special-Education


Special Format Library
Kansas State Library Talking Book Service

1 Kellogg Circle
PO Box 4055
Emporia, KS 66801-5415

http://kslib.info/153/Talking-Books


Special Health Care Needs
Services for Children with Special Health Care Needs
Department of Health and Environment

1000 SW Jackson Street, Suite 220
Topeka, KS, 66612-1274
Find regional offices:

http://www.kdheks.gov/shcn/


Speech, Language, and Hearing
Kansas Speech-Language-Hearing Association

6001 Cherokee Drive
Fairway, KS, 66205

http://www.ksha.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.kansas.gov


UCEDD
Kansas University Center on Developmental Disabilities
University of Kansas

1052 Robert Dole Human Development Center
Lawrence, KS, 66045
(785) 864-4295

https://kucdd.ku.edu


Vocational Education and Rehabilitation
Academic and Technical Education
Kansas State Department of Education

(785) 296-7935
jscott@ksde.org

http://www.ksde.org/Agency/Division-of-Learning-Services/Career-Standards-and-Assessment-Services/CSAS-Home/Career-Technical-Education-CTE


Goodwill Industries Easter Seals of Kansas, Inc.
3500 SW 10th Ave.
Topeka, KS 66604-1904
(785) 272-4060

http://www.easterseals.com/capper/


Kansas Federation of the Council for Exceptional Children
krasmussen@nkesc.org

http://community.cec.sped.org/ks/home



Special Olympics Kansas
5280 Foxridge Drive
Mission, KS, 66202
(913) 236-9290
kso@ksso.org
Check website for regional offices and contacts

http://ksso.org/



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Newborn Genetic Screenings
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
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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