THE DOWN SYNDROME CONNECTION OF THE BAY AREA

The mission of the Down Syndrome Connection of the Bay Area (DSCBA) is to empower, inspire, and support people with Down syndrome, their families, and the community that serves them, while fostering awareness and acceptance in all areas of life. Our vision is to live in a world where everyone has access to opportunities and has doors opened for them for inclusion and collaboration; where people aren’t made to feel like they are less than because they have differences, but are instead celebrated for their differences.

The DSCBA began in 1998, when two mothers of children with Down syndrome recognized a need for a community organization to support people with Down syndrome in the San Francisco Bay Area. Over the past 22 years, the DSCBA has grown to employ over two dozen staff and contractors and to serve thousands of members in the greater San Francisco Bay Area, including people with Down syndrome, their families, and members of the educational and medical communities that serve them.

DSCBA’s current goals are to continue our various programs; continue modest, sustainable growth to meet the needs of our members; and continue to bridge gaps in support and services to families with a member with Down syndrome. Key areas of focus in the coming year include: 1) implementation of a pilot Mental Health and Wellness Alliance to increase access to mental health services; 2) continuing our DSEA, classes, and other current supportive and educational services, including through the use of online and phone-based services in light of the COVID-19 outbreak; 3) expanding our support of our adults and the aging population; 4) expanding our programs specific to the needs of families who have children that are diagnosed with both Down syndrome and autism; and 5) increasing our online and social media-based services and outreach. These programs and services help ensure that people with Down syndrome and other developmental disabilities have the opportunity to achieve their best quality of life.

Our strategies are to continue and expand our current programs based on the needs of the people we serve: children and adults with Down syndrome, their families, educators, medical professionals, and others who serve them.

Current program highlights:

The goal of our New Family Support Program is to provide pregnant or new parents with compassionate and up-to-date information, resources, and support that they need when confronted with a new diagnosis, and to help educate the medical community who has the first contact with these families. This program provides pre- and postnatal consultation for new parents; comprehensive parent packets (in English or Spanish) with tools, information, resources, supplies, toys, and hand-made baby quilts; a Medical Outreach program, which provides information and education to hospital staff as well as parents (often our first contact with new and expecting parents); Early Connections support groups; parent-to-parent mentor program with training; our 40-hour per week Help Center; music therapy; grandparents support groups; and educational workshops (including guest presenters such as occupational therapists, speech and language pathologists, behaviorists, and marriage and family therapists).

The Down Syndrome Education Alliance (DSEA) enables children with Down syndrome to learn, thrive, and reach their full potential in inclusive and special day school environments. DSEA provides training, tools, curricula, and other resources to education teams; provides one-on-one assistance to children, their families, and their educators; ability awareness presentations to students and teachers; an AAC lending library and training; and the Communication Readiness Program (CRP), a summer school which provides children ages 4-7, their parents, and their teachers with the necessary preparation, tools, and training to be able to communicate their needs and become ready for the coming school year from a communications, literacy, and socialization standpoint.

Our THRIVE classes are weekly classes by age level (our clients currently range from age 4 to 64) that build social, motor, speech and language, and literacy and communication skills. Recreation and physical movement are core elements of the program. Our participants THRIVE when they are Together, Happy, Respected, Independent, Valued, and Empowered. Each class incorporates dance, singing, Wii exercises, and obstacle courses. Peer-to-peer learning is a key component, and participants, particularly in the young adult and adult classes, gain important social skills and make lasting friendships. In the last several years we expanded our this program by adding classes, increasing staff, providing enhanced therapies, and improving evaluation and tracking systems. We currently have nine THRIVE locations throughout the Bay Area: Antioch, Berkeley, Castro Valley, Danville, Dublin, Oakland, San Francisco, San Mateo, and Vallejo.

DSCBA has grown in the last over two decades to become the go-to Bay Area resource for information and support for people with Down syndrome and their families. Our staff of over two dozen includes experts in developmental disabilities, education and special education, social work, speech language pathology, AAC, I/DD and aging, dual diagnoses of Down syndrome and autism spectrum disorder, music therapy, and bilingual (English and Spanish) support. DSCBA also benefits from an 18-member technical advisory board that includes clinical psychologists, occupational therapists, behavior analysists, special educators, speech and language pathologists, and special needs attorneys.

We are open five days a week and have a staffed headquarters in Danville that welcomes drop ins, and hosts numerous classes and programs. We also have satellite locations in eight other communities across the Bay Area. We also have strong partnerships with allied organizations across the Bay Area, including Regional Centers, dozens of school districts, hospitals and pediatric clinics (including John Muir Health, Kaiser Permanente, and Charlie’s Clinic at UCSF Benioff Children’s Hospital). We are also supported by a diverse foundation of income sources, including two major annual fundraising events, several private foundations and corporate sponsors, other organizations’ fundraisers on our behalf, and individual donations.

Key staff:

Nancy LaBelle, Executive Director: In her 13 years with the DSCBA, Nancy has grown the organization from a $250,000 to $1,000,000 budget with her drive to make change, using skills from her 24-year career as a Director of a Fortune 500 company. She has a Bachelor's in Business Management and a Master's in Technology Management.

Marianne Iversen, Director of Teen and Adult Programs: Marianne has been involved with DSCBA since 2008 as a board member, then teacher, and Director of Programs. She develops programs for teens and adults with Down syndrome and continues to teach a THRIVE class for teens. Marianne brings over two decades of experience of working with adults in both a school and adult program setting teaching vocational and life skills.

Elizabeth Lewis, Educational Director, has a degree in Early Childhood Education and over 18 years’ experience in Early Intervention support. She joined DSCBA in 2016. In addition to hosting various educational workshops, providing consults and hands-on training to families and education teams, Elizabeth gives Ability Awareness presentations at schools all over the Bay Area.

Cathleen Small, Director of Medical Outreach and New Family Support, has worked for DSCBA since early 2015 and has connected with hundreds of Bay Area hospitals, pediatricians, and geneticists to ensure that they have accurate, up-to-date information about Down syndrome to give to new families. Cathleen holds a B.A. and an M.A. in English, and is mom to Sam, who has Down syndrome and autism.

DSCBA has achieved sustainable growth every year, and currently reaches more than 1,000 families who are connected to someone they love who has Down syndrome each year, as well as more than 1,000 educators and students throughout the Bay Area. In just the last five years we have trained more than 2,000 education professionals and more than 600 medical professionals, provided Ability Awareness training to more than 7,500 students, welcomed 200 new babies with Down syndrome and their families, partnered with 42 school districts, supported 34 hospitals, and much more.

In 2020, our staff and specialists worked hard to pivot our previously in-person services to virtual formats. We also dramatically increased our services to Spanish-speaking families through our new Bilingual Program & Support Services Manager. Our Director of Education created an online program called TEACH, a weekly virtual educational and empowerment series created to inspire and support parents and caregivers who are participating in distance learning during shelter in place. The TEACH goal is to provide TRAINING that leads to EMPOWERMENT and ACCESS to materials while utilizing a COLLABORATIVE approach and fostering at HOME education success. A total of 13 workshops were provided in 2020, each one averaging 30 or more participants.

In addition, our weekly THRIVE Program began taking place via Zoom, providing a social outlet for our participants who miss seeing their friends in person, as well as respite and support for caregivers. Our THRIVE facilitators have created innovative art, physical fitness, and other activities that class participants can do at home and then share during the online class. Our bilingual Music Therapist has a YouTube channel with videos that families can follow along with, from learning how to make simple musical instruments from household items, to then using those instruments to sing and play along with the songs.

We also created a new Down syndrome and autism online program, and we are reaching out to mental health workers about putting together services to help families during this challenging time of quarantine, as well as the everyday challenges of caring for a child or adult with Down syndrome and co-occurring disorders like autism and dementia. We also created a new low-tech communication board library using Padlet, housed on our website, and have been providing training workshops in how to download, personalize, and use these tools.

DSCBA was made aware in April 2020 that there are many families with a child with Down syndrome in the East Bay and beyond who are experiencing food insecurity due to caregivers being out of work during the pandemic. We raised over $17,000 from our operating fund, John Muir Health, the Lowell Berry Foundation, and the Global Down Syndrome Foundation to provide weekly food boxes of fresh fruits and vegetables, dairy, meat, and other essentials to 65 families (300 people) over a period of 10 weeks.