The Northwest Down Syndrome Association began as the Northwest Down Syndrome Parent Support Group in 1997, founded by and for parents of children with Down syndrome. The group was led by Sunday Sheely and other parents, including Angela Frome, who built our first parent resource library. At that time the group focused on support for families of babies with Down syndrome, creating a New Parent Guide to information and support to new families. They held monthly parent gatherings to build a community of support and shared information.
In 2002, the original group of parents began to look for others interested in stepping up to help run the group. At that time, Angela Jarvis-Holland was Chair of the area Interagency Coordinating Council, and in that capacity had been working with other parents to mobilize the community in the face of severe cuts to Early Intervention services in Oregon. Angela and her husband, Steven Holland, decided that it made sense for them to step in and help with the group, as Angela had the capacity to invest considerable volunteer hours to support the needs of families of children with Down syndrome. Angela called on her skills as a researcher, a former nurse, and a community organizer to bring people together to rebirth the original support group as the Northwest Down Syndrome Association. She was driven by the pride she had for her son Daniel, then two, and she wanted to build an organization that would give her family and others like it the tools they needed to help their children thrive.
Angela and Steven met with veteran parents from the area, including Sunday Sheely, Michael Bailey and Joan Medlen to discuss ideas for the group, and to assess the needs in the community. The decision was made that initially the group would focus on Birth-5 population, in light of the cuts to Early Intervention, and the real need for education and empowerment for parents of young children.
They organized a meeting of parents in the Portland area, and about a dozen people came together to design the first Reciprocal Learning Community (RLC) session. Angela approached Duncan Campbell with the concept of creating an ongoing educational community that would educate and empower parents, and he agreed to fund the first session. With the help of the Karen Gaffney Foundation and a group of professionals, including some of the therapists the Jarvis-Holland family met through Early Intervention, the RLC was born.
In 2003 the group began to do business as the Northwest Down Syndrome Association (NWDSA). Dad Howard Roll took on the roll of president, and Angela Jarvis-Holland committed to volunteer 20 hours a week, which she went on to do for first 7 years of the NWDSA. Steven and other dads worked actively to keep their perspective and involvement high in the group from the beginning. The group created a steering committee of professional advisors to guide them on current research and best practices. The materials and research of Sue Buckley and Downs Ed from the UK were fundamental to building trainings that were research-based and empowering.
The NWDSA recognized from the outset that parents are the one constant in their children’s lives; systems may come and go, supports may come and go, but the family is there throughout the journey. The decision was made to invest in building on parent strengths and skills; we wanted to build true partnerships between empowered parents and enlightened professionals.
During that first year, Laurie Powers, then head of the OHSU Center on Self-Determination, became a mentor to Angela, and offered the NWDSA their first small office space, but the Jarvis-Holland dining room table was the main hub for meetings and ideas, inspiration and project development in the early years of the NWDSA.
The next project was a revision of the New Parent Guide, with the goal of creating a resource of solid information and strength-based, positive stories to help families just starting out on their journeys. In 2004 Sydney Shook and Jamie Burch launched the Open Arms Playgroup with a mini-grant from the NWDSA, which gave new parents a chance to get together and play and share between RLC events. In 2007 the NWDSA moved into its first Resourcefulness Center space on NE Glisan Street in Portland, and in 2010 expanded into the current space in the Multnomah Education Service District building on Airport Way.
Since 2006, our scope has grown to include work on building inclusive schools and communities, as well as legislative and community advocacy around the civil rights of all citizens with disabilities. Our annual All Born (In) inclusive education conference attracts over 300 parents and professionals every April. When we started to do work around inclusion in schools for children with Down syndrome, it became clear that inclusion for one learner is inclusion for all, leading us into the cross-disability advocacy that we do around school inclusion and classroom supports. The All Born (In) conference led to the founding of the Kindergarten Inclusion Cohort in 2010, and the broader All Born (In) movement which includes photo awareness campaigns and the Coalition for Universal Design for Living and Learning.
We continue to provide support to new families of children with Down syndrome in the form of the New Parent Guide, phone support and monthly Open Arms playgroups. We also hold educational trainings for parents and professionals throughout the year, in addition to social events for families with children of all ages. We are connected with over 1400 families and professionals from around the region, creating a web of support and community. We strive to replace isolation and fear with knowledge, relationships and empowerment. As a social change organization with the mission of creating inclusive communities, we believe that informed, empowered families and enlightened community members are vital foundations for the change we seek.
The Board of Directors of the NWDSA is made up primarily of parents of children with Down syndrome, and those board members volunteer significant time to support our projects. Prior to September of 2008, the NWDSA was a volunteer organization; since that time we have been able to support a part-time paid executive director and other part-time staff, with all paid hours complemented by professional-level volunteer time. Parent and professional volunteers were the bedrock of our work in the early days, and continue to be so to this day. Since its earliest days the NWDSA has been able to create high-quality, innovative projects and family supports in large part because of the generosity of the community that supports it.