Hawaii

HAWAII

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

Assistive Technology Resource Centers of Hawaii

414 Kuwili Street, Suite 104

Honolulu, HI, 96817-5050

(800) 645-3007

(808) 532-7110 (V/TTY)

jodi@atrc.org

http://www.atrc.org


Autism

Autism Society of Hawaii

PO Box 61924

Honolulu, HI, 96839

(808) 342-0364

autismhi@gmail.com

https://autismsocietyofhawaii.org


Career & Technical Education

Career and Technical Education

University of Hawaii

Lower Campus Road, Lunalilo Portable 1

Honolulu, HI, 96822

(808) 956-7461

http://www.hawaii.edu/cte


CHIP

(health care for low-income uninsured children)

Med-QUEST Division

P.O. Box 3490

Honolulu, HI, 96811-3490

(808) 587-3521

http://www.medquest.hawaii.gov/


D D Council

State Council on Developmental Disabilities

919 Ala Moana Boulevard, Suite 113

Honolulu, HI, 96814

(808) 586-8100

waynette.cabral@doh.hawaii.gov

http://www.health.hawaii.gov/


Developmental Disabilities

Developmental Disabilities Division

Hawaii State Department of Health

1250 Punchbowl St., Room 463

Honolulu, HI, 96813

(808) 586-5840

http://health.hawaii.gov/ddd/


Early Intervention

Department of Health

1350 S. King Street, Suite 200

Honolulu, HI, 96814

(808) 594-0006

sue.brown@doh.hawaii.gov

http://www.health.hawaii.gov/


Special Education

Office of Curriculum Instruction and Student Support

Special Education Services Branch

Student Support & Special Education Sections

637 18th Avenue, Building C

Honolulu, HI, 96816

(808) 733-4838

http://www.hawaiipublicschools.org/


Epilepsy

Epilepsy Foundation of Hawaii

200 N. Vineyard Boulevard, Suite B259

Honolulu, HI, 96817

(808) 528-3058

efh@epilepsyhawaii.org

http://www.epilepsyhawaii.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

(713) 520-0232 (V)

(713) 520-5136 (TTY)

ilru@ilru.org

http://www.ilru.org


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

(202) 207-0334 (V)

(202) 207-0340 (TTY)

ncil@ncil.org

http://www.ncil.org


Intellectual & Developmental Disabilities

The Arc in Hawaii

3989 Diamond Head Road

Honolulu, HI, 96816

(808) 737-7995

info@thearcinhawaii.org

http://www.thearcinhawaii.org


Learning Disabilities

Learning Disabilities Association of Hawaii

200 N. Vineyard Boulevard, Suite 310

Honolulu, HI, 96817

(800) 533-9684 (in HI)

(808) 536-9684 (V/TTY);

LDAH@LDAHawaii.org

http://www.ldahawaii.org


Mediation

Hawaii Department of Education

Special Education Section

1390 Miller St.

Honolulu, HI, 96813

(808) 586-3230

http://www.hawaiipublicschools.org


Mental Health

Behavioral Health Administration

Department of Health

1250 Punchbowl Street

Honolulu, HI, 96813

(808) 586-4416

webmail@doh.hawaii.gov

http://health.hawaii.gov/


Adult Mental Health Division

1250 Punchbowl Street, Room 256

Honolulu, HI, 96813

(808) 586-4770

http://www.amhd.org


Mental Health America of Hawaii

1136 Union Mall, Suite 510

Honolulu, HI, 96813

(808) 521-1846

http://www.mentalhealth-hi.org


NAMI Hawaii, National Alliance on Mental Illness

770 Kapiolani Boulevard, Suite 613

Honolulu, HI, 96813

(808) 591-1297

info@namihawaii.org

http://www.namihawaii.org/


Hawaii Families as Allies, Federation of Families for Children’s Mental Health

99-209 Moanalua Road, Suite 305

PO Box 1971

Aiea, HI, 96701

(808) 682-1511

hfaa@hfaa.net

http://hifamilies.org


Mental Health – Youth

Child and Adolescent Mental Health Division

Department of Health

3627 Kilauea Avenue, Suite 101

Honolulu, HI, 96816

(808) 733-9339

http://health.hawaii.gov


Parent Organization

Special Parent Information Network (SPIN)

1010 Richards Street, Room 118

Honolulu, Hawaii, 96813

(808) 586-8126 (V/TTY)

spin@doh.hawaii.gov

http://www.spinhawaii.org


Parent Teacher Association (PTA)

Hawaii State Parent Teacher Student Association

PO Box 96782

Honolulu, HI, 96782

(808) 943-2042

histateptsa@gmail.com

http://www.hawaiistateptsa.org


Parent Training and Information Center (PTI)

Hawaii Parent Training and Information Center

Learning Disabilities Association of Hawaii

245 N. Kukui St., Ste 205

Honolulu, HI, 96817

(800) 533-9684 (in HI)

(808) 536-9684 (V/TTY)

nmoore@LDAHawaii.org

http://www.ldahawaii.org


Protection & Advocacy

Hawaii Disability Rights Center

1132 Bishop Street, Suite 2102

Honolulu, HI, 96813

(808) 949-2922 (V/TTY)

info@HawaiiDisabilityRights.org

http://www.HawaiiDisabilityRights.org


Relay Services

(808) 643-8255 (V)

(808) 643-8833 (TTY); 711 (TTY)

(800) 229-5746 (Speech to Speech)


Special Education

Student Support Services Branch

Hawaii Department of Education

637 18th Avenue, Room C-101B

Honolulu, HI, 96816

(808) 733-4400

paul_ban@notes.k12.hi.us

http://www.hawaiipublicschools.org


Special Format Library

Hawaii State Library for the Blind and Physically Handicapped

402 Kapahulu Avenue

Honolulu, HI, 96815

(808) 733-8444

(808) 733-8446

(808) 733-8444 (TTY)

http://www.librarieshawaii.org/


Special Health Care Needs

Children with Special Health Needs Program

Department of Health

741 Sunset Avenue

Honolulu, HI, 96816

(808) 733-9055 (V/TTY)

http://health.hawaii.gov/


Speech, Language, and Hearing

Hawaii Speech-Language-Hearing Association

P.O. Box 235888

Honolulu, HI, 96823

(808) 528-4742

hsha_membership@yahoo.com

http://www.hsha.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://portal.ehawaii.gov/


Transition Services

Special Education Section, Student Support Services Branch

Hawaii Department of Education

637 18th Avenue, Room C-102

Honolulu, HI, 96816

(808) 733-4832

maxine_nagamine@notes.k12.hi.us

http://www.autismspeaks.org


UCEDD

Pacific Basin Program

University of Hawaii, Center on Disability Studies

1776 University Avenue, UA 4-6

Honolulu, HI, 96822

(808) 956-2303

robertsk@hawaii.edu

http://www.hawaii.edu/cds


Vocational Rehabilitation

Division of Vocational Rehabilitation

Department of Human Services

600 Kapi’olani Blvd. #305

Honolulu , HI, 96813

(808) 586-9745

smitchell@dhs.hawaii.gov

http://humanservices.hawaii.gov/vr


Easter Seals Hawaii

710 Green Street

Honolulu, HI, 96813

(888) 241-7450

(808) 536-1015 (V/TTY)

http://www.eastersealshawaii.org


Disability and Communication Access Board

919 Ala Moana Boulevard, Room 101

Honolulu, HI, 96814-4920

(808) 586-8121 (V/TTY)

dcab@doh.hawaii.gov

http://www.hawaii.gov/health/dcab

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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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