Nevada

Nevada

ADA Center
Pacific ADA Center
555 12th Street, Suite 1030
Oakland, CA, 94607
(800) 949-4232 (V/TTY)
(510) 285-5600 (V/TTY
adatech@adapacific.org
http://www.adapacific.org


Assistive Technology
Nevada Assistive Technology Collaborative
Office of Disability Services
3656 Research Way, Suite 32
Carson City, NV, 89706
(775) 687-4452;
(775) 687-3388 (TTY)
kpreston@dhhs.nv.gov


Nevada Special Education Technology Assistance Project
P.O. Box 603
Carson City, NV, 89702
(775) 283-2315
nsetap@aol.com
http://www.nsetap.com/home.shtml


CHIP
(Health care for low-income uninsured children)
(800) 318-2596
Check website for local help
https://www.healthcare.gov/medicaid-chip/childrens-health-insurance-program/


D D Council
NV Governor’s Council on Developmental Disabilities
896 West Nye Lane, Ste. #202
Carson City, NV, 89703
(775) 684-8619
smanning@dhhs.nv.gov


Developmental Disabilities
Nevada Division of Public and Behavioral Health
Department of Health and Human Services
Check website for various locations
(775) 684-4200
dpbh@health.nv.gov
http://dpbh.nv.gov/About/DPBH_Overview/


Early Intervention
Department of Health and Human Services
Early Intervention Programs
(775) 684-4000
Check website for various offices
nvdhhs@dhhs.nv.gov
http://dhhs.nv.gov/Programs/IDEA/Early_Intervention_Programs/


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
(713) 520-5136 (TTY)
ilru@ilru.org
http://www.ilru.org


Northern Nevada Center for Independent Living
999 Pyramid Way
Sparks, NV, 89431
(800) 552-5588
(775) 353-3599 V/TTY
nncil7@sbcglobal.net
http://www.nncil.org


Southern Nevada Center for Independent Living
6039 Eldora Avenue Suite H-8
Las Vegas, NV, 89146
(800) 870-7003
(702) 889-4216 V/TTY
info@sncil.org
http://www.sncil.org/


Intellectual & Developmental Disabilities
Opportunity Village
6300 W. Oakey Boulevard
Las Vegas, NV, 89146
(702) 259-3707
Guthrie@opportunityvillage.org
http://www.opportunityvillage.org


Learning Disabilities
Learning Disabilities Association of America
4156 Library Road
Pittsburgh, PA, 15234
(888) 300-6710
(412) 341-1515
http://www.ldaamerica.org


Mediation
Nevada Department of Education
700 E. Fifth Street, Suite 113
Carson City, NV, 89701
(775) 687-9170
http://www.doe.nv.gov


Mental Health
Nevada Division of Public and Behavioral Health
Department of Health and Human Services
Check website for various offices
(775) 684-4200
dpbh@health.nv.gov
http://dpbh.nv.gov/About/DPBH_Overview/


NAMI Nevada
680 S Rock Blvd
Reno, NV, 89502
(775) 336-3090
info@naminevada.org
president@naminevada.org
https://naminevada.org/


Mental Health – Youth
Division of Child and Family Services
Department of Human Resources
4126 Technology Way, 3rd Floor
Carson City, NV, 89706
(775) 684-4400
http://dcfs.state.nv.us


Parent Organizations
Parent Teacher Association (PTA)
Nevada Parent-Teacher Association
6134 W. Charleston Boulevard
Las Vegas, NV, 89146
(800) 782-7201
(702) 258-7885
office@nevadapta.org
http://www.nevadapta.org


Parent Training and Information Center (PTI)
Nevada PEP
2101 S. Jones Blvd, Suite 120
Las Vegas, NV, 89146
(800) 216-5188 (in NV)
(702) 388-8899
(775) 448-9950 Satellite Office Reno
pepinfo@nvpep.org
http://www.nvpep.org


Parent-To-Parent
Family TIES of Nevada
3100 Mill Street, Suite 117
Reno, NV, 89502
(866) 326-8437
(775) 823-9500
info@familytiesnv.org
http://www.familytiesnv.net


Preschool, Disabilities
Office of Special Education, Elementary and Secondary
Education, and School Improvement Programs
Nevada Department of Education
700 E. Fifth Street, Suite 113
Carson City, NV, 89701
(775) 687-9170
http://www.doe.nv.gov


Protection & Advocacy
Nevada Disability Advocacy and Law Center
6039 Eldora Avenue, Suite C
Las Vegas, NV, 89102
(888) 349-3843 (toll-free)
(702) 257-8150
(702) 257-8160 (TTY)
ndalc@ndalclv.org
http://www.ndalc.org


Relay Services
(800) 326-6888 (V)
(800) 326-6868 (TTY); 711 (TTY)
(888) 326-5658 (Speech to Speech)


Special Education
Office of Special Education, Elementary and
Secondary Education, and School Improvement Programs
Nevada Department of Education
700 E. Fifth Street, Suite 113
Carson City, NV, 89701-5096
(775) 687-9142
fmccabe@doe.nv.gov
http://www.doe.nv.gov


Special Format Library
Nevada Talking Book Services
100 North Stewart Street
Carson City, NV, 89701-4285
(800) 922-9334
(775) 684-3354
(775) 687-8338 (TTY)
keputnam@clan.lib.nv.us
http://www.loc.gov/nls/braille-audio-reading-materials/find-a-local-library/


Special Health Care Needs
Title V – MCH & CYSHCN
Nevada State Health Division
Department of Health and Human Services
4150 Technology Way, Suite 210
Carson City, NV, 89706
(775) 684-4285
daquino@health.nv.gov
http://health.nv.gov


Family-to-Family Health Information Center at Family TIES of Nevada
3100 Mill Street, Suite #117
Reno, NV, 89502
(866) 326-8437 (toll free)
(775) 823-9500 (Reno office)
(702) 740-4200 (Las Vegas office)
info@familytiesnv.org
http://www.familytiesnv.net


Speech, Language, and Hearing
Nevada Speech-Language and Hearing Association
P.O. Box 7313
Reno, NV, 89510-7313
(702) 452-9029
info@nvsha.org
http://www.nvsha.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.nv.gov/


Transition Services
Nevada Department of Education
Office of Special Education
1820 E Sahara, Suite 208
Las Vegas, NV, 89104
(702) 486-6621
tvenardos@doe.nv.gov
http://www.doe.nv.gov/


UCEDD
Nevada Center for Excellence in Disabilities
University of Nevada, Reno
Mail Stop 285
Reno, NV, 89557
(775) 784-4921
(800) 216-7988
(775) 327-5234 (TTY)
http://nced.info/


Vocational Education and Rehabilitation
Office of Career, Technical and Adult Education
Department of Education
700 E. Fifth Street, Suite 111
Carson City, NV, 89701-5096
(775) 687-9144
pdryden@doe.nv.gov
http://www.doe.nv.gov


Department of Employment, Training, and Rehabilitation
2800 E. St. Louis Ave., Las Vegas, NV 89104
500 East Third Street, Carson City, NV 89713
(775) 684-4040
detradmn@nvdetr.org
http://detr.state.nv.us/


Disability Resources, Inc.
50 E Greg St., Suite 102
Sparks, NV, 89431
(775) 329-1126
info@disabilityresourcesnv.org
http://www.disabilityresourcesnv.org/


Easter Seals Sierra Nevada
6100 Neil Road, Suite 201
Reno, NV, 89511
(800) 228-7102
(775) 322-6555
info@eastersealsnv.org
http://www.sierra.easterseals.com


Easter Seals Nevada (various locations)
6200 W. Oakey Boulevard
Las Vegas, NV, 89146
(702) 870-7050
bpatchett@eastersealssn.org
http://www.easterseals.com/nevada/


VSA arts of Nevada
At the Lake Mansion
250 Court Street
Reno, NV, 89501
(775) 826-6100
tammy@vsanevada.org
http://vsanevada.org


Variety Children’s Charity of Southern Nevada
PO Box 26701
Las Vegas, NV 89126
Ph: 702-901-3040
http://www.varietysn.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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