Arizona

ARIZONA

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


Ability 360

Independent Living, Sports, Home Care & Other Services

5025 E. Washington St., Ste. 200

Phoenix, AZ 85034

(602) 256-2245

info@ability360.org

https://ability360.org/


Assistive Technology

Arizona Technology Access Program (AZTAP)

2400 N. Central Avenue, Suite 300

Phoenix, AZ, 85004

(800) 477-9921 (toll-free)

(602) 728-9534

(602) 728-9536 (TTY)

http://www.nau.edu/ihd/aztap/


Autism

Southwest Autism Research & Resource Center

Campus for Exceptional Children

300 N. 18th Street

Phoenix, AZ, 85006

(602) 340-8717

sarrc@autismcenter.org

http://www.autismcenter.org


Autism Society of Greater Phoenix

PO Box 10543

Phoenix, AZ, 85064

(480) 940-1093

info@phxautism.org

http://www.phxautism.org


CHIP Program

KidsCare

c/o AHCCS

801 E Jefferson St.

Phoenix, AX 85034

(602) 417-4000

(800) 654-8713

Check website for various offices

https://www.azahcccs.gov/Members/GetCovered/Categories/KidsCare.html


D D Council

Governor’s Council on Developmental Disabilities

3839 N. 3rd Street, Suite 306

Phoenix, AZ, 85012

(602) 277-4986

fkahn@azdes.gov

https://www.azdes.gov/ADDPC/Home/


Developmental Disabilities

Department of Economic Security

Division of Developmental Disabilities

P.O. Box 6123, Site Code (791A)

Phoenix, AZ, 85005

(602) 542-6853

http://www.azdes.gov/ddd


Early Intervention

Arizona Early Intervention Program (AzEIP)

Department of Economic Security

3839 N. 3rd Street, Suite 304

Phoenix, AZ, 85012

(888) 439-5609 (in AZ)

(602) 532-9960

http://www.azdes.gov/azeip


Epilepsy

Epilepsy Foundation of Arizona

P.O. Box 25084

Phoenix, AZ, 85002-5084

(888) 768-2690

(602) 406-3581

efaz@chw.edu

http://www.epilepsyfoundation.org/arizona/


Intellectual & Developmental Disabilities

The Arc of Arizona

3839 N. 3rd Street, Suite 105

Phoenix, AZ, 85012

(866) 501-2721

(602) 234-2721, ext. 103

thearcaz@gmail.com

http://www.arcarizona.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


Learning Disabilities

Learning Disabilities Association of Arizona

18001 N. 79th Ave., E-71

Glendale, AZ, 85308

(623) 206-2896

rcrawford@life-development-inst.org

https://ldaamerica.org/lda-chapters/arizona/


Mediation

Arizona Department of Education

Exceptional Student Services

1535 W. Jefferson

Phoenix, AZ, 85007

(602) 364-4011

http://www.ade.az.gov


Mental Health

Mental Health Association of Arizona

6411 E. Thomas Road

Scottsdale, AZ, 85251

(480) 994-4407, ext. 11

aberger@mhaarizona.org

http://www.mhaarizona.org


Arizona Alliance for the Mentally Ill

NAMI Arizona

2210 N. 7th Street

Phoenix, AZ, 85006-1604

(800) 626-5022

(602) 244-8166

namiaz@namiaz.org

http://namiarizona.org


Mental Health – Youth

Division of Behavioral Health Services

Department of Health Services

150 N. 18th Avenue, Suite 200

Phoenix, AZ, 85007

(602) 364-4753

nelsonla@azdhs.gov

http://azdhs.gov


Parent Organizations

Parent Information Network

Exceptional Student Services

Arizona Department of Education

3300 N. Central Ave.

Phoenix, AZ 85012

(800) 237-3007

(602) 542-4013

becky.raabe@azed.gov

http://www.azed.gov/special-education/


Enhancing Arizona’s Parent Networks (EAPN)

Exceptional Student Services

Arizona Department of Education

2384 N. Steves Boulevard

Flagstaff, AZ, 86004

(623) 329-3089

http://www.ade.az.gov/ess/eapn/


Arizona Congress of Parents and Teachers, Inc.

2721 N. 7th Avenue

Phoenix, AZ, 85007

(602) 279-1811

azpta@andiamo-tel.com

http://www.azpta.org


Raising Special Kids

5025 E. Washington St., Suite 204

Phoenix, AZ, 85034-2005

(800) 237-3007 (in AZ only)

(602) 242-4366

info@raisingspecialkids.org

http://www.raisingspecialkids.org


Parent-to-Parent

P2P at Raising Special Kids

See listing for the Parent Training and Information Center.


Partners in Policymaking

Pilot Parents of Southern Arizona

2600 N. Wyatt Drive

Tucson, AZ, 85712

(877) 365-7220

(520) 324-3150

ppsa@pilotparents.org

http://www.pilotparents.org


Preschool, Disabilities

Arizona Department of Education

Early Childhood Education

1535 W. Jefferson Street, Bin 15

Phoenix, AZ, 85007-3280

(602) 542-2727

valerie.james@azed.gov

http://www.ade.az.gov


Protection & Advocacy

Arizona Center for Disability Law

100 N. Stone St, Suite 305

Tucson, AZ, 85701

(520) 327-9547 (V/TTY)

(800) 927-2260

center@azdisabilitylaw.org''http://www.azdisabilitylaw.orgRelay Services

(800) 842-4681 (V)

(800) 367-8939 (TTY); 711 (TTY)

(800) 842-6520 (Speech to Speech)


Special Education

Exceptional Student Services

Arizona Department of Education

1535 W. Jefferson Street, Bin 24

Phoenix, AZ, 85007

(602) 542-4013

colette.chapman@azed.gov

http://www.ade.az.gov/ess/


Special Format Library

Arizona State Library

Archives and Public Records

Braille and Talking Book Division

1030 N. 32nd Street

Phoenix, AZ, 85008

(800) 255-5578

(602) 255-5578

btbl@lib.az.us

http://azlibrary.gov/talkingbooks/contact


Speech, Language, and Hearing

ArSHA (The Arizona Speech-Language-Hearing Association)

P.O. Box 12334

Tempe, AZ, 85284

(602) 354-8062

office@arsha.org

http://www.arsha.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://az.gov/


Transition Services

Rehabilitation Services Administration

1789W Jefferson 2nd Floor NW

Site 930A

Phoenix, AZ, 85007

(602) 542-0751

(602) 463-9002 (cell)

bschoen@azdes.gov


UCEDD

Institute for Human Development

Northern Arizona University

P.O. Box 5630

Flagstaff, AZ, 86011

(928) 523-4791

(928) 523-1695 (TTY)

Thomas.Uno@nau.edu

http://nau.edu/sbs/ihd/


Sonoran UCEDD

University of Arizona

1521 E. Helen St.

PO Box 210155H

Tucson, AZ, 85721

http://sonoranucedd.fcm.arizona.edu


Vocational Rehabilitation

Rehabilitation Services Administration

Department of Economic Security

1789 W. Jefferson, 2nd Floor, NW (930A)

Phoenix, AZ, 85007

(800) 563-1221

(602) 542-3332

azrsa@azdes.gov

https://www.azdes.gov/rehabilitation_services/


Easter Seals Arizona

Various locations

(520) 327-1529

http://www.easterseals.com/blakefoundation/


2-1-1 Arizona

2200 N. Central Avenue, Suite 601

Phoenix, AZ, 85004

2-1-1 (in AZ)

(877) 211-8661 (anywhere)

firstcall@cir.org

http://www.211arizona.org


VSA arts of Arizona

3321 N. Chapel Avenue

Tucson, AZ, 85716

(520) 795-6502

vsaaz@vsaaz.org

http://www.vsaaz.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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