History of the Down Syndrome Foundation of Orange County
Recognizing the need to improve programs and services for children with Down syndrome in Orange County, California, Down Syndrome Foundation of Orange County (DSF) formed in 2001. Shortly after incorporating, DSF launched a monthly support group to connect local families and provide a forum for sharing information. Structured to include social and educational components, the group quickly grew to include families not only from the Newport Beach/Costa Mesa area, but from San Diego and Long Beach as well.
DSF hosted its first fundraising event in October 2001. The Visions of Hope for their Future gala brought families, friends and community members together to celebrate people with Down syndrome, spread awareness and raise much needed funding for local services. DSF hosted the Visions gala for 15 years from 2001 through 2015.
For its first eight years, DSF delivered much of its work through, and in collaboration with, another local parent group (then called PROUD, now DSAOC). From 2001 through 2008, DSF donated almost $350,000 to DSAOC. DSF also helped procure a series of grants (worth over $275,000) that enabled DSAOC to open its first office, hire its first executive director and implement new programming.
DSF developed its first formal program in 2002. DSF, in collaboration with DSAOC, designed a detailed parent education program designed to help families navigate the first five years of life with Down syndrome. This program, delivered through DSAOC, provided critical Orange-County specific information and resources to families through an orientation guide, seminars, resource center and home/hospital visits. This successful program qualified for renewable funding through the California Children and Families First Act, and received national honors.
By 2004, with its support group growing and its work expanding, DSF recognized another critical unmet need: effective education for children with Down syndrome. That observation set the stage for DSF’s most innovative and impactful work, its development and implementation of The Learning Program™. Over the course of the next eight years, DSF worked with educators, researchers and therapists to create its program, which uses evidence-based approaches to teaching children with Down syndrome. The Learning Program™ is now a model for parent-focused educational intervention, delivered through Down syndrome associations across the nation.
In 2009, DSF partnered with Down Syndrome Education USA to open Orange County’s first Down syndrome-specific developmental research and training center, which operated from 2009 through 2017. Now, with its base in Irvine, California, DSF continues its work to improve education for people with Down syndrome.
The Learning Program™ has served as a springboard for other local and national services. DSF now offers year-round educational opportunities for teachers, parents and students, provides individual and group tutoring, hosts a monthly Teen Time program, and provides educational training at local and national conferences.
History of The Learning Program™
In June 2001, Down Syndrome Foundation (DSF) launched a monthly support group to connect local families and provide a forum for sharing information. Meetings focused on social, therapeutic and educational topics. By 2004, the group had grown to 25 regularly participating families. Topics on teaching reading, inclusion and behavior support drew standing-room only crowds. The group’s demand for additional educational support set the stage for development and implementation of The Learning Program™.
From May 2004 through July 2005, DSF, in collaboration with Down Syndrome Association of Orange County (DSAOC) and input from a professional advisory board, planned and hosted the program’s pilot year. Held at a local church, parent sessions focused on literacy, with content developed by Terry Brown, who was already working in Orange County to support learners with Down syndrome through her So Happy To Learn program. Student sessions incorporated aspects of this program and were staffed by volunteers. The success of the pilot confirmed the program model as an effective way to provide direct educational support to families.
The second program year brought many adjustments. Recognizing the importance of sharing evidence-based practices, the program’s advisory board took a more active role in guiding development, with monthly meetings and curriculum review. Credentialed teachers and licensed therapists were hired to lead student sessions. Sessions moved from a church basement to DSAOC’s office with separate space for parent and student classes and storage for educational resources. DSF developed a second, higher, level of instruction to accommodate those families who had already participated in the pilot and wanted continued education. By September 2005, the program served 35 families.
Each subsequent program year brought further curriculum development and more families. The advisory board continued to play a vital role in development, and modules on literacy, memory, comprehension, math and educational options were added and refined. Most recently, program content has been aligned to Common Core State Standards. Guidance from Sue and Frank Buckley (Down Syndrome Education International), Professors Mark Warschauer and Penny Collins (University of California, Irvine), Professor Susan Leonard-Giesen (California State University, Long Beach), Nicki Presby (credentialed teacher), Kim Courtney Bowman (occupational therapist), and Linda Tyson (speech therapist), among others, helped DSF construct an innovative and broad-reaching program that uses evidence-based approaches to teaching children with Down syndrome. From its original 21 families, the program grew to serve over 100 families monthly, supporting students from preschool through sixth grade.
In 2009, DSF partnered with Down Syndrome Education International (DSEI) to form Down Syndrome Education USA (DSEUSA). Together, DSF and DSEUSA opened Orange County’s first Down syndrome-specific developmental research and training center and moved Learning Program sessions to this dedicated space. With its base in Irvine, California, The Learning Program™ is now a model for parent-focused educational intervention, delivered in partnership with Down syndrome organizations across the nation.
The Learning Program™ has served as a springboard for DSF’s other local and national services. DSF now offers year-round educational opportunities for teachers, parents and students, provides individual and group tutoring, hosts weekly After School Academy sessions and monthly Teen Time sessions. DSF also provides educational training at local and national conferences. Learning program resources are available for free through DSF’s website and are accessed by over 14,500 registered users worldwide.