Washington

Washington

ADA Center
Northwest ADA Center
Center for Continuing Education in Rehabilitation
University of Washington
6912 220th St SW, #105
Mountlake Terrace, WA, 98043
http://www.nwadacenter.org


Assistive Technology
Washington Assistive Technology Act Program
University of Washington Center for Technology & Disability Studies
UW Mailbox 357920
Seattle, WA, 98195-7920
http://wata.org


CHIP
(health care for low-income uninsured children)
The CHIP Program
Washington State Department of Social and Health Services
http://www.benefits.gov/benefits/benefit-etails/1615


D D Council
Washington Developmental Disabilities Council
2600 Martin Way E, Suite F
Olympia, WA, 98504
http://www.ddc.wa.gov


Developmental Disabilities
Division of Developmental Disabilities
Department of Social and Health Services
P.O. Box 45310
Olympia, WA, 98504-5310
http://www.dshs.wa.gov/ddd


Epilepsy
Epilepsy Foundation Northwest
2311 N. 45th Street, #134
Seattle, WA, 98103
http://www.epilepsynw.org


Early Intervention
Infant Toddler Early Intervention Program
Division of Developmental Disabilities
Department of Social and Health Services
P.O. Box 45201
Olympia, WA, 98504-5201
http://del.wa.gov/development/esit/Default.aspx


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/WA


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 State
2638 State Avenue N.E.
Olympia, WA, 98506
http://www.arcwa.org


Learning Disabilities
Learning Disabilities Association of Washington
16315 NE 87th Street, Suite 11
Redmond, WA, 98052
http://www.ldawa.org


Mediation
Sound Options Group, LLC
197 Parfitt Way, S.W., Suite 220
P.O. Box 11457
Bainbridge Island, WA, 98110
http://www.soundoptionsgroup.com


Mental Health
Mental Health Division
Department of Social and Health Services
P.O. Box 45320
Olympia, WA, 98504-5320
http://www.dshs.wa.gov/dbhr/index.shtml


Parent Organizations
Community Parent Resource Center
Open Doors for Multi Cultural Families
4327 S. 253rd Street
Kent, WA, 98032
http://www.multiculturalfamilies.org


Parent Teacher Association (PTA)
Owen Atkins, Interim Executive Director
Washington State PTA
2003 65th Avenue West
Tacoma, WA, 98466-6215
http://www.wastatepta.org


PAVE
Washington State Parent Information and Training Center
6316 S. 12th Street
Tacoma, WA, 98465-1900
http://www.wapave.org


Parent-To-Parent
Washington State P2P Programs
State Coordinating Office
2638 State Avenue N.E.
Olympia, WA, 98506
http://www.arcwa.org


Preschool, Disabilities
Early Childhood Services
Special Education Learning Improvement
Office of Superintendent of Public Instruction
P.O. Box 47200
Olympia, WA, 98504-7200
http://www.k12.wa.us


Protection & Advocacy
Disability Rights Washington
315 Fifth Avenue South, Suite 850
Seattle, WA, 98104
http://www.disabilityrightswa.org


Relay Services
(800) 833-6384 (Voice)
(800) 833-6388 (TTY); 711 (Voice or TTY)
(800) 833-6385 (Telebraille)
(877) 833-6341 (Speech-to-Speech)
http://www.washingtonrelay.com/


Special Education
Special Education Operations
Office of Superintendent of Public Instruction
P.O. Box 47200
Olympia, WA, 98504-7200
http://www.k12.wa.us/specialed


Special Format Library
Washington Talking Book and Braille Library
2021 9th Avenue
Seattle, WA, 98121-2783
http://www.wtbbl.org


Special Health Care Needs
Children with Special Health Care Needs
Department of Health
P.O. Box 47880
Olympia, WA, 98504-7880
http://doh.dc.gov/service/children-and-youth-special-health-care-needs


Speech, Language, and Hearing
Washington Speech-Language-Hearing Association
2150 N. 107th Street, Suite 205
Seattle, WA, 98133-9009
http://www.wslha.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.access.wa.gov


Transition Services
Center for Change in Transition Services
College of Education, Seattle University
P.O. Box 222000
Seattle, WA, 98122-4340
http://www.seattleu.edu/ccts


UCEDD
Center on Human Development and Disabilities
University of Washington
Center on Human Development and Disability
PO Box 357920
Seattle, WA, 98195-7920
http://www.depts.washington.edu/chdd


Vocational Education and Rehabilitation
Career and Technical Education
Office of Superintendent of Public Instruction
P.O. Box 47200
Olympia, WA, 98504-7200
https://www.dshs.wa.gov/office-of-the-secretary/division-vocational-rehabilitation


Division of Vocational Rehabilitation
Department of Social and Health Services
P.O. Box 45340
Olympia, WA, 98504-5340
http://www1.dshs.wa.gov/dvr


PROVAIL
3670 Stoneway North
Seattle, WA, 98103
http://www.provail.org/


Easter Seals Washington
220 W. Mercer, Suite 120 West
Seattle, WA, 98119
http://www.wa.easterseals.com


PAVE
Infant/Toddler Early Intervention Program
6316 S. 12th Street
Tacoma, WA, 98465
http://www.wapave.org


Summit Assistance Dogs
7575 Chestnut Lane
Anacortes, WA, 98221
http://www.summitdogs.org


Families Together
213 Smith Gym 213 D
Pullman, WA, 99164
http://www.familiestogether.org/


Washington State Fathers Network
16120 N.E. 8th Street
Bellevue, WA, 98008
(425) 747-4004, ext. 4286
(800) 833-6388
greg.schell@kindering.org
http://www.fathersnetwork.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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