Missouri

Missouri

ADA Center
Great Plains ADA Center

100 Corporate Lake Drive
Columbia, MO 65203
1-800-949-4232

adacenter@missouri.edu

https://www.gpadacenter.org/


Assistive Technology
Missouri Assistive Technology

1501 NW Jefferson St.
Blue Springs, MO 64015
(816) 655-6700
info@mo-at.org

https://at.mo.gov/


CHIP
(health care for low-income uninsured children)
MO Healthnet for Kids

615 Howerton Court
PO Box 6500
Jefferson City, MO 65102-6500
855-373-4636

https://dss.mo.gov/mhk/


D D Council
Missouri Developmental Disabilities Council

PO Box 687
1706 E. Elm Street
Jefferson City, MO 65102
573-751-8611 Toll Free: 800-500-7878

https://moddcouncil.org/


Early Intervention
First Steps - Birth to 3

205 Jefferson St.
Jefferson City, MO 65101
573-751-5739, 866-583-2392

sefirststeps@dese.mo.gov
https://dese.mo.gov/special-education/first-steps


Epilepsy
Epilepsy Foundation of Missouri & Kansas

4406 St. Vincent
Saint Louis, MO 63119
(314)781-4949 or (800)264-6970

epilepsy@efmk.org
https://efmk.org/


Independent Living
Missouri Statewide Independent Living Council

P.O. Box 104174
Jefferson City, MO 65110-4174
(573) 415-8775

AdonisTBrown@mosilc.org
https://mosilc.org/


Missouri Resource Guide

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


NAMI-Missouri, National Alliance on Mental Illness
3405 W. Truman Blvd., #102,
Jefferson City, MO 65109
Phone (573) 634-7727
Warmline 1-800-374-2138
info@namimissouri.org

https://namimissouri.org/


Parent Training and Information Center (PTI)
Missouri Family to Family

215 W. Pershing Rd., 5th floor, Kansas City, MO 64108
800.444.0821
info@p2pga.org

https://mofamilytofamily.org/


Protection & Advocacy
Missouri Advocacy Office

925 South Country Club Dr.
Jefferson City, MO 65109
573-659-0678 / 800-392-8667
app.unit@mo-pa.org

http://www.moadvocacy.org/


The ARC of Missouri
1177 N. Warson Road, St. Louis, MO 63132
314-817-2275
info@arcofmissouri.org

https://www.arcofmissouri.org/


Relay Services
(800) 255-0135 (V)
(800) 255-0056 (TTY);, 711 (TTY)
(800) 229-5746 (Speech to Speech-English)
(866) 260-9470 (Speech to Speech-Spanish)


Special Education
Division for Special Education
Missouri Department of Education

205 Jefferson St.
Jefferson City, MO 65101
573-751-5739
specialeducation@dese.mo.gov

https://dese.mo.gov/special-education


Speech, Language, and Hearing
Missouri Speech-Language-Hearing Association

2000 East Broadway, PMB 296
Columbia, MO 65201-6009
1-888-729-6742

https://showmemsha.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:

www.mo.gov


Easter Seals Midwest
11933 Westline Industrial Drive
St. Louis, MO 63146
1-800-200-2119



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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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