Oregon

Oregon

DA 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
Access Technologies, Inc.

3070 Lancaster Drive N.E.
Salem, OR, 97305

http://www.accesstechnologiesinc.org


Autism
Autism Society of Oregon

PO Box 396
Marylhurst, OR, 97036-0396

http://autismsocietyoregon.org/


Regional Programs for Low Incidence Disabilities
State Services for Autism

Department of Education
255 Capitol Street, NE
Salem, OR, 97310-0203

http://www.soesd.k12.or.us/special-education/low-incidence-disabilities/


Portland Aspergers Network
3324 NE 22nd Avenue
Portland, OR, 97212

http://www.pdxaspergers.org/


CHIP
(health care for low-income uninsured children)

Oregon SCHIP
Division of Medical Assistance Programs
Administrative Office
500 Summer Street NE
Salem, OR, 97301

http://www.oregon.gov/oha/healthplan/pages/app_benefits/schip.aspx


D D Council
Oregon Council on Developmental Disabilities

540 24th Place N.E.
Salem, OR, 97301-4517

http://www.ocdd.org


Early Intervention & Preschool, Disabilities
Early Intervention/Early Childhood Special
Education Department

Office of Special Education
Department of Education
255 Capitol Street N.E.
Salem, OR, 97310-0203

http://www.ode.state.or.us


Epilepsy
Epilepsy Foundation of Northwest

2311 N. 45th Street, #134
Seattle, WA, 98103

http://www.epilepsyoregon.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/OR


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 Oregon

1745 State Street
Salem, OR, 97301

http://www.arcoregon.org/


Learning Disabilities
Learning Disabilities Association of Oregon

10175 S.W. Barbur Blvd., #214B
Portland, OR 97219

http://www.ldaor.org


Mediation
Office of Student Learning and Partnerships
Department of Education

255 Capitol Street N.E.
Salem, OR, 97310-0203

http://www.ode.state.or.us


Mental Health
Mental Health Association of Oregon (MHAO)

Regional Research Institute (RRI)
Portland State University
1600 SW 4th Avenue, Suite 900
P.O. Box 751
Portland, OR, 97207-0751

NAMI Oregon
3550 S.E. Woodward
Portland, OR, 97202-1552

http://www.nami.org/oregon


Oregon Family Support Network, Inc.
2411 Martin Luther King Jr. Boulevard, Suite 274
Eugene, OR, 97401

http://www.ofsn.org


Addictions in Mental Health Division
500 Summer Street, N.E., E86
Salem, OR, 97301-1118

http://egov.oregon.gov/dhs/mentalhealth


Mental Health – Youth
Child and Adolescent Mental Health Services

Addictions and Mental Health Division (AMH)
500 Summer Street, N.E., E86
Salem, OR, 97309

http://www.dhs.state.or.us/mentalhealth


Parent Organizations
Parent Teacher Association (PTA)

Oregon PTA
P.O. Box 4569
Portland, OR, 97208-4569

http://www.oregonpta.org


Parent Training and Information Center (PTI)
(Serving Native family members nationwide who have children with disabilities)
National Indian Parent Information Center (NIPIC)

P.O. Box 2334
Grants Pass, OR, 97528

http://www.nipic.org/


Parent Training and Information Center (PTI)
Family and Community Together (FACT)

13455 SE 97th Avenue
Clackamas, OR, 97015

http://factoregon.org/


Protection & Advocacy
Disability Rights Oregon

610 SW Broadway, Suite 200
Portland, OR, 97205

http://www.disabilityrightsoregon.org


Relay Services
(800) 735-1232 (V)
(800) 735-3250 (VCO)
(800) 735-2900 (TTY); 711 (TTY)
(800) 735-0644 (ASCII)


Special Education
Office of Student Learning and Partnerships

Department of Education
255 Capitol Street N.E.
Salem, OR, 97310-0203

http://www.ode.state.or.us


Special Format Library
Oregon State Library
Talking Book and Braille Services

250 Winter Street NE
Salem, OR, 97301-3950

https://www.oregon.gov/library/Pages/default.aspx


Special Health Care Needs
Child Development and Rehabilitation Center

Oregon Health & Science University
P.O. Box 574
Portland, OR, 97207-0574

http://ohsucancer.com/xd/health/child-development-and-rehabilitation-center/about-cdrc/index.cfm


Speech, Language, and Hearing
The Oregon Speech-Language and Hearing Association

P.O. Box 523
Salem, OR, 97308

http://www.oregonspeechandhearing.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.oregon.gov/


Transition Services
Office of Student Learning & Partnerships
Special Education Unit

Department of Education
255 Capitol Street N.E.
Salem, OR, 97310

http://www.ode.state.or.us


UCEDD
University of Oregon UCEDD
College of Education
5252 University of Oregon
Eugene, OR, 97403

http://ucedd.uoregon.edu


Oregon Health & Science University UCEDD
Oregon Health & Science University
Institute on Development & Disability
707 SW Gaines St.
Portland, OR, 97239

http://www.ohsuidd.org


Vocational Rehabilitation
Office of Vocational Rehabilitation Services
Department of Human Services

Children, Adults & Families Division
500 Summer Street N.E., E87
Salem, OR, 97301-1120

http://www.oregon.gov/dhs


Easter Seals Oregon
5757 S.W. Macadam Avenue
Portland, OR, 97239

http://www.or.easterseals.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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