Alaska

ALASKA

ADA Center

Northwest ADA Center

Center for Continuing Education in Rehabilitation

University of Washington

6912 220th St SW, #105

Mountlake Terrace, WA, 98043

(800) 949-4232 (V/TTY)

(425) 248-2480 (V/TTY)

dbtacnw@u.washington.edu

http://www.nwadacenter.org


Autism

Golden Heart (AK) Autism Society

607 Old Steese Hwy, Suite B #285

Fairbanks, AK, 99701

(907) 374-4421

(877) 374-4421

info@asagoldenheart.org

http://www.asagoldenheart.org


Career & Technical Education

Office of Career and Technical Education

801 West 10th Street, Suite 200

P.O. Box 110500

Juneau, AK, 99811-0500

(907) 465-2800

http://www.education.alaska.gov


CHIP Program

Denali KidCare

P.O. Box 110601

Juneau, AK, 99811-0801

(907) 465-1696

http://dhss.alaska.gov/dhcs/Pages/denalikidcare/default.aspx


D D Council

Governor’s Council on Disabilities and Special Education

3601 C Street, Suite 740

Anchorage, AK, 99503

(888) 269-8990

(907) 269-8990

GCDSE@alaska.gov

http://dhss.alaska.gov/


Developmental Disabilities

Developmental Disabilities & Children with Complex Medical Conditions

Senior and Disabilities Services

3601 C Street, Suite 310

Anchorage, AK, 99503

(800) 478-9996

(907) 269-3666

http://dhss.alaska.gov/dsds/Pages/default.aspx


Early Intervention

Early Intervention/Infant Learning Program

ILP Main Office

550 West 8th Avenue

Anchorage, AK, 99501

(877) 477-3659

http://dhss.alaska.gov/


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

1333 Moursand Street

Houston, TX, 77030

(713) 520-0232 (V)

(713) 520-5136 (TTY)

ilru@ilru.org

http://www.ilru.org


To find the contact information for centers for

independent living (CILs) in your state, contact:

National Council on Independent Living

2013 H. Street NW, 6th floor

Washington, DC, 20006

(202) 207-0334 (V)

(202) 207-0340 (TTY)

ncil@ncil.org

http://www.ncil.org


Intellectual & Developmental Disabilities

The Arc of Anchorage

2211 Arca Drive

Anchorage, AK, 99508

(907) 277-6677

info@thearcofanchorage.org

http://thearcofanchorage.org


Mental Health

Division of Behavioral Health

Department of Health and Social Services

P.O. Box 110620

Juneau, AK, 99811-0620

(907) 465-3370

(907) 465-2225 (TTY)

http://dhss.alaska.gov/dbh/Pages/default.aspx


Alaska Mental Health Board

PO Box 110608

Juneau, AK, 99811

(888) 464-8920

http://dhss.alaska.gov/amhb/Pages/default.aspx


NAMI Alaska, National Alliance on Mental Illness

PO Box 201753

Anchorage, AK, 99520

(800) 478-4462

(907) 277-1300

alaskanami@gmail.com

https://www.namialaska.org/


Parent Organizations

Community Parent Resource Center

LINKS Parent Resource Center

3161 E. Palmer-Wasilla Hwy, suite 2

Wasilla, AK, 99654

(907) 373-3632

linksinfo@linksprc.org

http://linksprc.org/


Protection & Advocacy

Disability Law Center of Alaska

3330 Arctic Boulevard, Suite 103

Anchorage, AK, 99503

(800) 478-1234

(907) 565-1002 (V/TTY)

akpa@dlcak.org

http://www.dlcak.org


Relay Services

(800) 770-8255 (V)

(800) 770-8973 (TTY); 711 (TTY)

(866) 355-6198 (Speech to Speech)


Special Education

Office of Special Education

Alaska Department of Education

801 W. 10th Street, Suite 200

PO Box 110500

Juneau, AK, 99801-1894

(907) 465-8693

http://www.eed.state.ak.us/tls/sped/


Special Health Care Needs

Family to Family Health Information Center

Stone Soup Group

307 E. Northern Lights Blvd, Suite 100

Anchorage, AK, 99503

(907) 561-3701

(887) 786-7327 (toll free)

info@stonesoupgroup.org

http://www.stonesoupgroup.org


Special Format Library

Alaska State Library

Talking Book Center

344 W. Third Avenue, Suite 125

Anchorage, AK, 99501

(800) 776-6566

(907) 269-6575

http://talkingbooks.alaska.gov/


Speech, Language, & Hearing

Alaska Speech-Language-Hearing Association

PO Box 111993

Anchorage, AK, 99511

(907) 212-0211

aksha907@gmail.com

http://www.aksha.org/


UCEDD

Center for Human Development

University of Alaska Anchorage

2702 Gambell Street, Suite 103

Anchorage, AK, 99503

(907) 272-8270

info@alaskachd.org

http://www.alaskachd.org


Vocational Rehabilitation

Division of Vocational Rehabilitation

801 W. 10th Street, Suite A

Juneau, AK, 99801

(907) 465-2814

http://labor.state.ak.us/dvr/home.htm


Easter Seals Alaska

670 W. Fireweed Lane, Suite 105

Anchorage, AK, 99503

(907) 277-7325

http://www.alaska.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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