Utah

Utah

ADA Center
Rocky Mountain ADA Center
3630 Sinton Road, Suite 103
Colorado Springs, CO, 80907
http://www.adainformation.org


Assistive Technology
Utah Assistive Technology Program
Center for Persons with Disabilities
Utah State University
6855 Old Main Hill
Logan, UT, 84322-6855
http://www.uatpat.org


Utah Center for Assistive Technology
1595 West 500 South
Salt Lake City, UT, 84104-5238
http://ucat.usor.utah.gov/


Autism
Autism Information Resources at the Utah Parent Center
2290 East 4500 South, Suite 110
Salt Lake City, UT, 84117
http://www.utahparentcenter.org


CHIP
(Health care for low-income uninsured children)
Utah CHIP
P.O. Box 143107
Salt Lake City, UT, 84114-3107
http://health.utah.gov/chip/index.htm


D D Council
Utah Developmental Disabilities Council
155 South 300 West, Suite 100
Salt Lake City, UT, 84101
http://www.utahddcouncil.org/


Developmental Disabilities
Division of Services for People with Disabilities
Department of Human Services
195 N 1950 West
Salt Lake City, UT, 84116
https://dspd.utah.gov/


Early Intervention
BabyWatch
Early Intervention Program
Utah Department of Health
P.O. Box 144720
Salt Lake City, UT, 84114-4720
http://www.utahbabywatch.org


Epilepsy
Epilepsy Association of Utah
1995 West 9000 South Level B
West Jordan, UT, 84088
http://www.epilepsyut.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
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/UT


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 Washington County
523 Sunland Dr., Suite A
St. George, UT 84790
www.thearc.org 


Mediation
Utah State Office of Education
250 East 500 South
P.O. Box 144200
Salt Lake City, UT, 84114
http://www.schools.utah.gov


Mental Health
Allies with Families
450 East 1000 North, Suite 311
North Salt Lake, UT, 84054
allies@allieswithfamilies.org
http://www.allieswithfamilies.org


NAMI-Utah
450 South 900 East
Salt Lake City, UT, 84102
http://www.namiut.org


Mental Health – Youth
Children, Youth and Families Team
Utah Division of Substance Abuse and Mental Health
195 N 1950 West
Salt Lake City, UT, 84116
(801) 538-3939
dsamh@utah.gov
https://dsamh.utah.gov


Parent Organizations
Family to Family Network
A Project of the Utah Parent Center
230 West 200 South, Suite 1101
Salt Lake City, UT, 84101
http://www.utahfamilytofamilynetwork.org/


Parent Teacher Association (PTA)
Utah Congress of Parents and Teachers
5192 S. Greenpine Drive
Salt Lake City, UT, 84123
http://www.utahpta.org


Parent Training and Information Center (PTI)
Utah Parent Center
230 West 200 South, Suite 1101
Salt Lake City, UT, 84101
http://www.utahparentcenter.org/


Preschool, Disabilities
Utah State Office of Education
250 East 500 South
P.O. Box 144200
Salt Lake City, UT, 84114-4200
(801) 538-7500
http://www.schools.utah.gov/specialeducation/Programs


Protection & Advocacy
Disability Law Center
205 North 400 West
Salt Lake City, UT, 84103
http://www.disabilitylawcenter.org


Relay Services
(888) 735-5906 (V)
(800) 346-4128 (V/TTY); 711 (TTY)
(800) 346-4128 (TTY)
(888) 346-5822 (Speech to Speech)


Special Education
Special Education Services
State Office of Education
250 East 500 South
P.O. Box 144200
Salt Lake City, UT, 84114-4200
http://www.schools.utah.gov


Special Format Library
Utah State Library Division
Program for the Blind and Disabled
250 North 1950 West, Suite A
Salt Lake City, UT, 84116-7901
http://blindlibrary.utah.gov


Special Health Care Needs
Utah Department of Health
Community and Family Health Services
Children with Special Health Care Needs
44 North Medical Drive
P.O. Box 144610
Salt Lake City, UT, 84114-4610
http://health.utah.gov/cfhs


Utah Division of Substance Abuse and Mental Health
120 North 200 West, Room 209
Salt Lake City, UT, 84103
(801) 538-3939
dsamh@utah.gov
https://dsamh.utah.gov/


Family Voices of Utah
44 N. Medical Drive
P.O. Box 144650
Salt Lake City, UT, 84114-4650
http://www.utahfamilyvoices.org/


Speech, Language, and Hearing
Utah Speech-Language-Hearing Association
1379 31st Street
Ogden, UT, 84403
http://www.ushaonline.net/


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.utah.gov/


Transition Services
Utah State Office of Education
SPECIAL EDUCATION
250 East 500 South
P.O. Box 144200
Salt Lake City, UT, 84114-4200
http://www.schools.utah.gov


UCEDD
Center for Persons with Disabilities
Utah State University
University Center for Excellence in Disabilities
6800 Old Main Hill
Logan, UT, 84322-6800
http://www.cpdusu.org


Vocational Rehabilitation
Utah State Office of Rehabilitation
P.O. Box 144200
Salt Lake City, UT, 84114-4200
http://www.usor.utah.gov


Utah Birth Defect Network
Department of Health
P.O. Box 144697
Salt Lake City, UT, 84114-4697
http://health.utah.gov/birthdefect


Access Utah Network (Statewide Information and Referral for Disability Issues)
Salt Lake City, UT, 84101
(801) 533-4646


Turn Community Services
Check website for county locations
Phil Shumway, Executive Director
philshumway@turndreams.org
http://turncommunityservices.org/


Art Access/VSA arts of Utah
230 South 500 West #125
Salt Lake City, UT, 84101
http://www.accessart.org


Work Ability Utah
Utah Department of Health
Division of Health Care Financing
c/o Office of Rehabilitation
1595 West 500 South
Salt Lake City, UT, 84104
https://211utah.org/

FAQS RESOURCES REGISTER DONATE
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.
Share by: