Navigating Down Syndrome

The more you know and feel supported as a caregiver, the more successful you and your child will be. The Utah Parent Center can direct you to resources in the community that provide support and education for caregivers who are raising a child with special needs.  

An internationally renowned non-profit organization that serves individuals with Down syndrome and their families. Their website is filled with information and resources about Down syndrome.

Grief counseling for children and their families.

Darren Dautel, (IHC) 801 530-9697

Their mission: To enforce and strengthen laws that protect the opportunities, choices and legal rights of people with disabilities in Utah.

The Division of Services for People with Disabilities (DSPD) serves children and adults who have intellectual disabilities, physical disabilities, brain injuries, and autism.

The mission of the Utah DD Council is to be the state's leading source of critical innovative, and progressive information, advocacy, leadership and collaboration to enhance the lives of individuals with developmental disabilities.

The Utah Parent Center is an award-winning training and information center founded in 1983 by parents of children and youth with all disabilities to help other parents facing similar challenges throughout Utah. The caring and competent staff of the UPC utilizes a proven, effective parent-to-parent model to help many thousands of parents annually. UPC staff has built collaborative networks with education, health and human service professionals, agencies and organizations. The Center promotes change within community through various projects and activities. Located in Salt Lake City, the Center serves families across Utah. The UPC is founded on the philosophy that parents are full partners in the decision-making processes that direct their child’s care and programs and, as such, can provide significant support to other parents in similar circumstances.

The mission of the Council is to promote and advocate for those with all types of disabilities to be included and involved in their communities. This is a non-residential based program.

The Down Syndrome Diagnosis Network (www.dsdiagnosisnetwork.org) provides a pamphlet for physicians called "How to Deliver a Postnatal Diagnosis of Down Syndrome." This information helps doctors, nurses, and therapists to communicate a Down syndrome diagnosis in a positive way to new and expectant parents and to provide them with accurate, up-to-date information.

This Toolkit for Primary Care Providers contains a "Health Watch Table" specifically for children and adults with Down syndrome. It specifies what to look for in patients with Down syndrome at all ages and gives recommendations for treatment/referrals.

(1) Life Skills Clinic at the University of Utah
Location: 417 Wakara Way Suite 1410
Salt Lake City, UT 84108
Phone: (801) 585-6837
Website: Occupational Therapy Life Skills Clinic
Facebook: https://www.facebook.com/OTLifeSkillsUU

We offer assistance for:
Fine and gross motor delays, sensory processing, self-regulation and emotional regulation, self-care and ADLs, social skills, play participation, feeding delays and challenges (we have SOS certified therapists), handwriting and school preparation skills, motor skills and planning, and much more!
* Interested families and service providers can contact us at (801) 585-6837 to schedule an evaluation or initial appointment.

Here is where you will find the most important information on Down syndrome – facts, concepts and philosophies that all who are concerned about people with Down syndrome need to know and use. That includes our New Parent Package; a collection of materials refined over years to provide new and expectant parents with an initial understanding of the challenges – and joys – of raising a child with Down syndrome. You will also find a wide array of current, expert articles, recommended reading and answers to the most frequently asked questions regarding Down syndrome. If you need further information, please contact the NDSC Center by calling, toll-free, 1-800-232-NDSC or sending email to info@NDSCcenter.org.

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. The Buddy Walk® was established in 1995 by the National Down Syndrome Society to celebrate Down syndrome and to promote acceptance and inclusion of people with Down syndrome.

This is the oldest organization in the country serving individuals with Down syndrome. Their mission is to ensure that all persons with Down syndrome have the opportunity to achieve their potential in all aspects of community life.

The International Down Syndrome Coalition is dedicated to globally acknowledging and promoting the dignity, respect, and rights to all individuals who have Down syndrome. Each year on March 21 the IDSC celebrates World Down Syndrome Day. The day was chosen to represent the third copy of chromosome 21, which is unique to individuals with Down syndrome, hence the date 3-21.

This organization provides a variety of adaptive sports and recreational activities for people with Down syndrome and other disabilities.

An organization located in Park City that empowers individuals of all abilities by building self-esteem, confidence and lifetime skills through sport, recreation and educational programs.

An organization made of passionate, committed individuals from every walk of life, who recognize the value and unique gifts of people with intellectual disabilities.

A camp run by the Kostopulos Dream Foundation, an organization dedicated to improving the lives of people with disabilities through the medium of recreation and leisure education.

A free pass to all National Parks for U.S. citizens and permanent residents with permanent disabilities.

A free fishing license for Utah residents with intellectual disabilities.