Nebraska

Nebraska

ADA Center
Great Plains ADA Center

100 Corporate Lake Drive
Columbia, MO, 65203

http://www.gpadacenter.org/


Assistive Technology
Nebraska Assistive Technology Partnership

3901 N. 27th Street, Suite 5
Lincoln, NE, 68521

http://www.atp.ne.gov


D D Council
Nebraska Planning Council on Developmental Disabilities
Department of Health and Human Services

301 Centennial Mall South
P.O. Box 95044
Lincoln, NE, 68509

http://dhhs.ne.gov/pages/DD-Planning-Council.aspx


Developmental Disabilities
Division of Developmental Disabilities
Nebraska Department of Health and Human Services

301 Centennial Mall South, Lincoln, Nebraska
P.O. Box 98947
Lincoln, NE, 68509-8947

http://dhhs.ne.gov/Pages/Developmental-Disabilities.aspx


Early Intervention
Nebraska Department of Education

301 Centennial Mall South
P.O. Box 94987
Lincoln, NE, 68509-4987

http://edn.ne.gov/


Health care
https://www.ehealthinsurance.com/nebraska-health-insurance


Independent Living
Nebraska Statewide Independent Living Council

215 Centennial Mall South, Suite 210
Lincoln, NE, 68508

http://www.nesilc.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

http://www.ncil.org


Intellectual & Developmental Disabilities
The Arc of Nebraska

1672 Van Dorn Street
Lincoln, NE, 68502

http://www.arc-nebraska.org


Mental Health
Division of Behavioral Health Services
Nebraska Department of Health and Human Services

P.O. Box 98925
Lincoln, NE, 68509-8925

http://dhhs.ne.gov/Pages/Behavioral-Health.aspx


Nebraska Family Support Network
3568 Dodge Street, Suite #2
Omaha, NE, 68131-3222

http://nefamilysupportnetwork.org/


NAMI-Nebraska
1941 S. 42nd Street, Suite 517
Omaha, NE, 68105

https://naminebraska.org


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

13304 W. Center Road, Suite 221
Omaha, NE, 68144

http://www.nebraskapta.org


Parent Training and Information Center (PTI) Nebraska
1941 S. 42nd St., Suite 205
Omaha, NE 68105

http://www.pti-nebraska.org


Parent to Parent Network
328 W. Norfolk Ave.
Norfolk, NE, 68701

http://www.parent-parent.org


Protection & Advocacy
Disability Rights Nebraska

134 South 13th Street, Suite 600
Lincoln, NE, 68508

http://www.disabilityrightsnebraska.org/


Relay Services
(888) 272-5528 (Spanish)
(800) 833-0920 (V); 711 (TTY)
(800) 833-7352 (TTY/ASCII)
(888) 696-0629 (Fast ASCII)
(888) 272-5527 (Speech to Speech)


Special Education
Office of Special Education
Nebraska Department of Education

301 Centennial Mall South
P.O. Box 94987
Lincoln, NE, 68509-4987

http://www.education.ne.gov/sped


Special Format Library
Nebraska Library Commission
Talking Book and Braille Service

The Atrium
1200 N Street, Suite 120
Lincoln, NE, 68508-2023

http://www.nlc.state.ne.us/tbbs


Special Health Care Needs
Nebraska Department of Health and Human Services

301 Centennial Mall South
P.O. Box 95026
Lincoln, NE, 68509-5026

http://dhhs.ne.gov/Pages/default.aspx


Speech, Language, and Hearing
Nebraska Speech-Language-Hearing Association

1633 Normandy Court, Suite A
Lincoln, NE 68512

http://www.nslha.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.nebraska.gov


Transition Services
Special Populations Office
Nebraska Department of Education

6949 S. 110th Street
Omaha, NE, 68128

https://www.education.ne.gov


UCEDD
Munroe-Meyer Institute for Genetics and Rehabilitation

University of Nebraska Medical Center
985450 Nebraska Medical Center
Omaha, NE, 68198-5450

http://www.unmc.edu/mmi


Vocational Education, Disabilities
School Counseling
Nebraska Department of Education

301 Centennial Mall South
P.O. Box 94987
Lincoln, NE, 68509-4987

https://www.vr.nebraska.gov


Vocational Rehabilitation
Nebraska Department of Education

301 Centennial Mall South, 6th Floor
P.O. Box 94987
Lincoln, NE, 68509-4987

https://www.education.ne.gov/arra/vocational-rehabilitation/


The Ollie Webb Center Pilot Parents
1941 S. 42nd Street, Suite 122
Omaha, NE, 68105

http://www.olliewebbinc.org


Easter Seals Nebraska
12565 West Center Road, Suite 100
Omaha, NE 68144-8144

http://www.easterseals.com/ne


Answers 4 Families
206 S. 13th Street, Suite 1000
Lincoln, NE, 68588-0227

http://www.answers4families.org


People First of Nebraska
Several chapters statewide
P.O. Box 5292 – Grand Island, NE 68802

http://www.peoplefirstnebraska.com


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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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