Local Resources for Families and Children
From the initial diagnosis through school-aged years and beyond, individuals with Down syndrome and their families face a wide range of challenges and find themselves immersed in an ever-changing, often complicated journey to learn how to best support and nurture their loved ones. Down Syndrome Network helps every step of the way.
DSNetwork Programs
- New & Expectant Parents
- Club Xtra for KIDS (ages 0-7)
- Tweens & Teens UP! (ages 8-17)
- Aging Matters (ages 18 & older)
- MOMS Night Out / D.A.D.S. Dads Appreciating Down Syndrome
- DS ConneX
info@DSNetworkAZ.org | call/text 480-759-9150
DDD strives to support the choices of individuals with disabilities and their families by promoting and providing flexible, quality, member-driven services and supports within communities. Most services to children and adults with developmental disabilities are delivered in the family’s or person’s own home as well as their community.
DES DDD Customer Service Center
DDDCustomerServiceCenter@azdes.gov
Toll Free (844) 770-9500
TTY/TDD 711
Fax: (602) 542-6870
Office Hours:
Monday – Friday, 8:00 a.m. – 5:00 p.m. (Arizona Time)
Pediatric Down Syndrome Clinic at Barrow Neurological Institute at Phoenix Children’s Hospital
A comprehensive multi-disciplinary clinic focused on the coordinated and management of children with Down syndrome.
Down Syndrome Clinic Coordinator:
Pilar Ojeda | pojeda@phoenixchildrens.com
p (602) 933-3617
Phoenix Children’s Care Network (PCCN)
website: https://www.pccn.org/
A physician-led, pediatric-focused clinically integrated organization that is committed to improving quality of care while effectively managing associated costs
A state resource for finding a Psychologist and Psychological Testing References
https://azpa.org/
Down Syndrome Clinical Research Studies
Exercise Program for Adults with Down Syndrome
Local Resources for Families and Children
A one-of-a-kind achievement center for individuals with Down syndrome, their families, and the community—providing free therapeutic and educational programs that advance literacy, math skills, motor skills and more.
Educate and empower, but especially give hope to individuals who have Down syndrome so they may grow up to become independent self-advocates. Sharing provides many positive support programs for families lucky enough to have a child with Down syndrome.
Develops and/or brings new programs and services to benefit the Down Syndrome community in Southern Arizona to improve and enrich the lives of individuals with Down syndrome and to promote public awareness.
Barrow Neurological Institute is recruiting individuals to participate in a Down syndrome resear ch study. The study will collect different types of brain scans, including MRI and PET scans, over time to see how Alzheimer’s disease changes the brain. Qualified study participants will receive all studyprocedures at no cost.
Through a variety of research programs and activities, now focusing on advocacy for Down syndrome research on the federal level, NDSS has long played a major role in advancing knowledge about Down syndrome.
- Research & Down Syndrome
- DS-Connect™: The Down Syndrome Registry
- Guide to Clinical Trials & Research Studies for People with Down Syndrome & their Families
- Directory of Current Studies
More Research Resources…
- Down Syndrome Research LuMind Foundation
- Down Syndrome Research Lab at ASU
- Global Down Syndrome Foundation
- Jérôme Lejeune Foundation
- Memory Development and Disorders Research (University of Arizona)
- National Institute for Child Health and Human Development
- Stanford School of Medicine Down Syndrome Research Center
- UC San Diego School of Medicine Down Syndrome Center for Research & Treatment
The Adult Down Syndrome Center is one of eleven sites working together to carry out clinical trials more rapidly. The initial focus is aimed at preventing Alzheimer’s disease onset in people with Down syndrome as well as supporting relevant observational studies.
A personalized care plan
With DSC2U, caregivers have an opportunity to complete an online intake form, where they can identify current health concerns about their son or daughter with Down syndrome. The responses will generate two personalized documents–a plan for caregivers and another one for the primary care provider. Watch the video below to learn how it works.
Absolute HCBS LLC was created on the three principals of providing great customer service, being an excellent place to work, and most of all – providing a valuable service to the individuals with developmental disabilities in Arizona. Services are delivered through a personalized approach, and we work so that our families will be able to embrace this journey every day, with as much dignity and independence as possible.
Passionate providers across Arizona provide support through your journey and home and community based services to individuals in Arizona that are eligible for DDD assistance.
- Habilitation
- Respite
- Attendant Care
- Person Centered Planning
A Place to Call Home provides a variety of programs for families or individuals interested in providing care for a child or adult in the foster care system or with special needs.
- Family Foster Homes (FFH) – DDD Certification-for families licensed as Family Foster Homes who are caring for a child receiving DDD (Division of Developmental Disabilities) and ALTCS (Arizona Long Term Care) services
- Child Developmental Home (CDH)
- Adult Developmental Home (ADH)
- Adoption Services
- Kinship-For families caring for relative children placed by the Department of Child Safety.
- Tribal Foster Care
- Respite Services
- Training including Foster Parent College, Medically Complex, Article 9, CPR and First Aid, and Prevention and Support. Trainings are offered in English and Spanish.
- Placement Services works with biological families and guardians to provide placement for children and adults with developmental disabilities in licensed developmental homes.
480-456-0549
S.E.E.K. Arizona provides integrated, evidence-based, person-centered services.
- Therapy
- Behavioral Health
- Junior & Senior Life Skills Learning Academies
480-902-0771 / 602-795-1663
- Legal Options Manual – Resources on guardianship, legal options for those 18+
- Arizona Legal Document Services provides affordable package rates for adult guardianship.
Nicole Panzella | nicole@arizonalegaldocs.com | 480-307-9306 - Bivens & Associates PLLC | Guardianship and Conservatorship Elder Law
info@ bivenslaw.com | (480) 922-1010 - Kile & Kupiszewski Law Firm, LLC
- Special Olympics – Chandler
- Special Olympics – Gilbert
- Special Olympics – Mesa
- Special Olympics – Tempe
- Special Olympics – Scottsdale
- Guide to Home Remodeling for Disability and Special Needs
- Jabbermouths
- Grieving a Loss
- Mended Little Hearts
- Phoenix Children’s Hospital
- Raising Special Kids
- Sensory Processing Disorder Resource Center
- Sleep Help: Down syndrome and sleep guide
- The Lending Closet
- Dentists for Special Needs Resource
National Resources
Additional National Resources
- Where Should I Go From Here?
- Understanding a Diagnosis of Down Syndrome
- A Healthy Start
- Finding Support
- A Parent’s Perspective
- Celebrating a baby with Down syndrome
- Welcoming and caring for a newborn
- Diagnosis to Delivery: Complete Guide
- Coping with Loss: Down Syndrome
- Family support resources
- How Will Having a Child with Down Syndrome Affect My Family?
- How Will Having a Sibling with Down Syndrome Affect My Other Children?
- What Are Some Tips for Taking Care of My Other Children’s Needs?
- How Can I Keep My Relationship with My Partner Strong?
- How Will Having a Child with Down Syndrome Affect My Family?
- How Will Having a Sibling with Down Syndrome Affect My Other Children?
- What Are Some Tips for Taking Care of My Other Children’s Needs?
- How Can I Keep My Relationship with My Partner Strong?
- How Will Having a Child with Down Syndrome Affect My Family?
- How Will Having a Sibling with Down Syndrome Affect My Other Children?
- What Are Some Tips for Taking Care of My Other Children’s Needs?
- How Can I Keep My Relationship with My Partner Strong?
- Life After High School
- Transition & the Family
- Employment & Volunteer Work
- Resources for Employers
- Housing Options
Got Transition™ aims to improve transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families.
- #DSWorks
- Employment & Volunteer Work
- Resources for Employers
- Post-High School
- Housing Options
- Transition & Family
- Printed Materials
- Videos
- Webinar Series