California

CALIFORNIA

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

California Assistive Technology System

Department of Rehabilitation

2000 Evergreen Street

Sacramento, CA, 95815

(916) 274-6325 (V/TTY)

http://www.dor.ca.gov


Autism

Autism Society of California

PO Box 1355

Glendora, CA, 91740 (800) 869-7069

ca-california@autismsocietyofamerica.org

http://www.autismsocietyca.org


CHIP Program

(Health care for low-income uninsured children)

Insure Kids Now

(877) 543-7669

https://www.insurekidsnow.gov/state/ca/index.html


Community Parent Resource Center

Parents CAN

1909 Jefferson St. Napa, CA, 94559

(707) 253-7444

parents@parentscan.org

http://www.parentscan.org


Fiesta Educativa, Inc. (Serving E. Los Angeles)

161 S. Avenue 24

Los Angeles, CA, 90031-2299

(323) 221-6696

info@fiestaeducativa.org

http://www.fiestaeducativa.org


Foster Youth Resources for Education (FYRE)

(Serving Alameda County)

3075 Adeline St., Suite 210

Berkeley, CA, 94703

(800) 348-4232 (510) 644-2555

info@dredf.org

http://www.dredf.org


Fuerza, Inc.

1340 E. McWood Street

West Covina, CA, 91790

(800) 200-4323

fuerz@fuerzainc.org

http://www.fuerzainc.org


Chinese Parents Association for the Disabled (Serving Los Angeles and Orange Counties)

P.O. Box 2884

San Gabriel, CA, 91778

(626) 307-3837

chen_rachel@hotmail.com

http://www.cpad.org


Vietnamese Parents of Disabled Children Association (Serving Orange and Los Angeles County)

7526 Syracuse Avenue

Stanton, CA, 90680

(714) 527-9216

contact@vpdca.org


D D Council

California State Council on Developmental Disabilities

1507 21st Street, Suite 210

Sacramento, CA, 95814

(866) 802-0514 (916) 322-8481

council@scdd.ca.gov

http://www.scdd.ca.gov


Developmental Disabilities

(providing services and support for infants, children, and adults with developmental disabilities)

Department of Developmental Services

California Health and Human Services Agency

1600 9th Street, Room 240

Sacramento, CA, 95814

(916) 654-1897

http://www.dds.ca.gov


Early Intervention

Part C Coordinator

Children and Family Services Branch

Department of Developmental Services

1600 9th Street, Room 330, MS 3-8

Sacramento, CA, 95814

(800) 515-2229 (916) 654-2773

ringraha@dds.ca.gov

http://www.dds.ca.gov/EarlyStart/Home.cfm


Epilepsy

Epilepsy Foundation of San Diego County

2055 El Cajon Blvd

San Diego, CA, 92104

(619) 296-0161

info@epilepsysandiego.org

http://www.epilepsysandiego.org


Epilepsy Foundation Greater Los Angeles 

5777 W. Century Boulevard, Suite 820

Los Angeles, CA, 90045

(800) 564-0445/(310) 670-2870

help@endepilepsy.org

http://endepilepsy.org/


Independent Living

To find 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 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 of California

1225 Eighth Street, Suite 350

Sacramento, CA, 95814

(916) 552-6619

tony@thearcca.org

http://www.thearcca.org/


Learning Disabilities

Learning Disabilities Association of California

808 West Balboa Blvd.

Newport Beach, CA, 92661

(909) 621-1494

contact@ldaca.org

http://ldaamerica.org


Mental Health

Mental Health Association in California

1127 11th Street, Suite 925

Sacramento, CA, 95814

(916) 557-1167

rselix@mhac.org

http://www.mhac.org


United Advocates for Children and Families

2035 Hurley Way, Suite 290

Sacramento, CA, 95825

(866) 643-1530 (916) 643-1530

information@uacc4families.org

http://www.uacf4hope.org


NAMI California

1010 Hurley Way, Suite 195

Sacramento, CA, 95825

(916) 567-0163

support@namicalifornia.org

http://www.NAMICalifornia.org


Mediation

Department of Education

Special Education Division

1430 N Street, 2nd Floor

Sacramento, CA, 95814

(916) 323-2196

http://www.cde.ca.gov/sp/se/


Mental Health

Department of Mental Health

1501 Capitol Avenue, MS4000

P.O. Box 997413

Sacramento, CA, 95899

(916) 440-7800

http://www.dhcs.ca.gov/services/Pages/MentalHealthPrograms-Svcs.aspx


Mental Health -Youth

Children and Family Services

California Department of Mental Health

1600 9th Street, Room 100

Sacramento, CA, 95814

(916) 651-2024

http://www.childsworld.ca.gov/


Parent Teacher Association (PTA)

California State PTA

2327 L Street

Sacramento, CA, 95816

(916) 440-1985

info@capta.org

http://www.capta.org/


Parent Training and Information Center (PTI)

Disability Rights Education and Defense Fund, Inc. (DREDF)

3075 Adeline Street, Suite 210

Berkeley, CA, 94703

(800) 348-4232 (510) 644-2555

info@dredf.org

http://www.dredf.org


MATRIX Parent Network and Resource Center

94 Galli Drive, Suite C

Novato, CA, 94949

(800) 578-2592 (415) 884-3535

info@matrixparents.org

http://www.matrixparents.org


Parents Helping Parents

1400 Parkmoor, Suite 100

San Jose, CA, 95126

(408) 727-5775

(408) 748-8339 (TTY)

info@php.com

http://www.php.com


Rowell Family Empowerment of Northern CA

962 Maraglia St.

Redding, CA, 96002

(530) 226-5129 (877) 227-3471

http://www.rfenc.org


Support for Families of Children with Disabilities

1663 Mission Street, 7th Floor

San Francisco, CA, 94110-3111

(415) 282-7494 (Program office)

(415) 920-5040 (Family Resource Center)

http://www.supportforfamilies.org


Team of Advocates for Special Kids (TASK)

100 W. Cerritos Avenue

Anaheim, CA, 92805

(866) 828-8275 (714) 533-8275

task@taskca.org

http://www.taskca.org


Team of Advocates for Special Kids (TASK) San Diego

3180 University Ave. Ste. 430

San Diego, CA, 92104

(877) 609-3218 (619) 282-0846

task@taskca.org

http://www.taskca.org


Parent-to-Parent

P2P at Parents Helping Parents, Inc.

1400 Parkmoor Ave.

San Jose, CA, 95126-3429

(408) 727-5775

http://www.php.com


Preschool, Disabilities

Special Education Division

Administrative Services Unit

Department of Education

1430 N Street, Suite 530

Sacramento, CA, 95814

(916) 327-3547

http://www.cde.ca.gov/sp/se/


Protection & Advocacy

Disability Rights California

1831 K Street

Sacramento, CA, 95811-4114

(800) 952-5544 (In CA)

916-504-5800 (800) 719-5798 (TTY)

info@disabilityrightsca.org

http://www.disabilityrightsca.org


Relay Services

(800) 735-2922 (V)

(800) 735-2929 (TTY); 711 (TTY)

(800) 854-7784 (Speech to Speech)


Special Education

Special Education Division

California Department of Education

1430 N Street, Suite 2401

Sacramento, CA, 95814

(916) 445-4602

http://www.cde.ca.gov/sp/se


Special Health Care Needs

Children’s Medical Services Branch

PO Box 997413, MS 0000

Sacramento, CA, 95899-7413

http://www.dhcs.ca.gov/services/Pages/CMS.aspx


Speech, Language, and Hearing

California Speech-Language-Hearing Association

(CSHA)

(representing speech-language pathologists and audiologists)

825 University Avenue

Sacramento, CA, 95825-6724

(916) 921-1568

CSHA@CSHA.org

http://www.CSHA.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.ca.gov/


Transition Services

Transition Services and Work Ability

Special Education Division

California Department of Education

1430 N Street, Suite 2401

Sacramento, CA, 95814

http://www.cde.ca.gov/sp/se/sr/wrkabltyI.asp


UCEDD

Tarjan Center, a UCEDD

University of California, Los Angeles

11075 Santa Monica Blvd., Suite 200

Los Angeles, CA, 90095

(310) 825-5054

MForgacs@mednet.ucla.edu

http://www.semel.ucla.edu/tarjan


UCEDD at Children’s Hospital Los Angeles

University of Southern California

4650 Sunset Boulevard

Mailstop #53

Los Angeles, CA, 90027

(323) 361-2300 (213) 480-4192 (TTY)

uscucedd@chla.usc.edu

http://www.uscucedd.org/


UCEDD at the UC Davis MIND Institute

UC Davis Health System

2825 50th Street

Sacramento, CA, 95817

(916) 703-0235

http://www.ucdmc.ucdavis.edu/ddcenter/


Vocational Education, Disabilities

Secondary, Postsecondary and Adult Leadership Division

California Department of Education

1430 N Street, Suite 4503

Sacramento, CA, 95814

(916) 445-2652

painswor@cde.ca.gov

http://www.cde.ca.gov/ci/ct/


Department of Rehabilitation

721 Capitol Mall

Sacramento, CA, 95814

(916) 324-1313 (VOICE)

(916) 558-5807 (TTY)

ExternalAffairs@dor.ca.gov

http://www.dor.ca.gov


California Association of School Psychologists

1400 K Street, Suite 311

Sacramento, CA, 95814

(916) 444-1595

memberservices@casponline.org

http://www.casponline.org


Easter Seals Bay Area

180 Grand Avenue, Suite 300

Oakland, CA, 94612

(510) 835-2131, ext. 126

mpelfini@esba.org

http://www.eastersealsbayarea.org


Family Resource Network (Serving Amador, Calaveras, San Joaquin, Stanislaus & Tuolumne Counties)

5250 Claremont Avenue, Suite 239

Stockton, CA, 95207

(800) 847-3030 (in 5 county region)

(209) 472-3674 frnfamilies@aol.com

http://www.frcn.org/


Variety - the Children's Charity

of Northern California

582 Market St., Suite 101

San Francisco, CA 94104

info@varitync.org

Main 415.781.3894

Fax 415.590.7222

Screening Room 415.781.3893

https://www.varietync.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.
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