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

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.

Website 

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

Local Resources for Families and Children

Barrow Neurological Institute/Dignity Health is recruiting individuals to participate in a Down syndrome research 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 study procedures at no cost.

Contact: Sandy Quintanilla | Sandy.Quintanilla@dignityhealth.org

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ASU’s Exericse Program for Adults with Down Syndrome, ExDS workouts consist of ​evidence-based cardio, strength, and flexibility training in order to improve the health-related fitness of adults with Down syndrome. 

Mondays, Wednesday, and Fridays. Session 1: 4-5:30 pm | Session 2: 5:30-7 pm | Lincoln Family Downtown Phoenix YMCA

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National resource that connects parents, who have recently received a diagnosis for their child or unborn baby, to other families touched by Down syndrome.

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Persons with any cognitive disability, regardless of age, fall within the criteria of the Silver Alert.

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Additional Down Syndrome Organizations in AZ

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.

Down Syndrome Research

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.

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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.

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
DSC2U – A virtual Down Syndrome Clinic to You

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.

Additional Local Resources

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

https://absolutehcbs.com

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

Special Olympics Arizona

  • Special Olympics – Chandler
  • Special Olympics – Gilbert
  • Special Olympics – Mesa
  • Special Olympics – Tempe
  • Special Olympics – Scottsdale
ABLE Account Resources

National Resources

Global Down Syndrome Foundation
Global Down Syndrome Foundation
National Association for Down Syndrome (NADS)
National Association for Down Syndrome (NADS)
National Down Syndrome Congress (NDSC)
National Down Syndrome Congress (NDSC)
National Down Syndrome Society (NDSS)
National Down Syndrome Society (NDSS)

Additional National Resources

  • Where Should I Go From Here?
  • Understanding a Diagnosis of Down Syndrome
  • A Healthy Start
  • Finding Support
  • A Parent’s Perspective

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  • 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

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Fun Fitness and Nutrition for Teens and Adults with Down syndrome! Up Fit n Fun is a member based community full of fun and easy to follow 15 minute full body exercise routines with nutrition tips that everyone will enjoy.  We are always adding exciting new videos.  Members will also have access to our private Facebook group for support and to share your success.    Every workout has different variations and step by step instruction for all abilities.

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  • 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?

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  • 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?

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  • Nutrition
  • Managing Behavior
  • Sexuality
  • Recreation & Friendship

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  • 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?

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Education

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  • Life After High School
  • Transition & the Family
  • Employment & Volunteer Work
  • Resources for Employers
  • Housing Options

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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

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Aging Matters

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  • Post-High School
  • Housing Options
  • Transition & Family
  • Printed Materials
  • Videos
  • Webinar Series

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