At WithinReach, we get to engage with families who are on a wide spectrum of places in their journey with a diagnosis of a special health or developmental need. Sometimes a family is just learning of a diagnosis prenatally, and sometimes they have many years of experience. The Arc of Washington and its nine regional chapters are excellent resources for families who are looking to connect around developmental disabilities, wherever they are on their journey.
We spoke with Jessika Houston, Down syndrome Outreach and Young Adult Self-Advocacy Coordinator at the Arc of Whatcom County to learn more about how she works with individuals and families with developmental disabilities:
Down syndrome Outreach is a program that exists for individuals with Down syndrome, their family members, friends and caregivers from birth through life. We provide resources, information, advocacy support, and connect families and individuals in our community to support one another on their journey. There are annual support events specific to Down syndrome Outreach (DsO), such as the Buddy Walk in October and the Spring Fling in May.
On World Down syndrome Day (which is March 21), our community helps to bring awareness to their schools and work places about Down syndrome. The goal is to focus on honoring and appreciating our differences, all of them, and therefore encouraging the celebration of our differences and bringing support to all ages. In Whatcom County, there is a vision of change and inclusion for future generations. This has really determined the focus of an aspect of the work I do with DsO, which is to support new families.
The opportunity to provide support and resources at the time of diagnosis is one that historically has been missed in the Down syndrome community worldwide.
When I started at The Arc I heard from our community the need to strengthen the supports for new families with a diagnosis of Down syndrome. There are many misconceptions and stereotypes about people with disabilities, and as Down syndrome is a chromosomal condition, we are able to learn of the diagnosis in the prenatal and postnatal stages.
The opportunity to provide support and resources at the time of diagnosis is one that historically has been missed in the Down syndrome community worldwide. In addition, many families have experienced negative interactions when receiving the diagnosis, with a lack of support and resources.
If families receive the diagnosis and then are told to seek out their own resources, they are vulnerable to inaccurate and prejudicial information. This does not fully engage and support this new family. Despite the challenges, countless families and self-advocates have been propelled from their experiences and helped to create policy which has shifted the dynamic in which families receive support.
Despite the challenges, countless families and self-advocates have been propelled from their experiences and helped to create policy which has shifted the dynamic in which families receive support.
In June 2016 in Washington State, the Down syndrome Information Act was passed in legislature. The law came forth because self-advocates spoke out about the impact on their families, and their vision of necessary support to new families.
The 2016 Down syndrome Information Act states: Medical Professionals are to provide materials to families at time of birth or pre-natal stages in delivering a likelihood of a diagnosis. Medical professionals affected by this bill are: midwife, osteopathic physician and surgeon & osteopathic physician’s assistant, physician & physician assistant, nurse, genetic counselor, hospitals, birthing centers & anyone/place in above categories that provide a parent with a prenatal or postnatal diagnosis. The WA State Department of Health has been working in response to this Law, and I have had the chance to connect with them in detail to discuss how we can ensure it is accessible and followed through by medical professionals in Washington State.
This past March, we held a statewide webinar regarding this issue. I am so grateful for the opportunity to be a part of something that we can now utilize as a resource supporting new families across the state. It has been incredible to see different communities and organizations from all over Washington come together to connect about these important issues to empower families and improve systems of care and support.
The main message I hope to convey to medical professionals is that the support, resources, and language that is used to give the diagnosis greatly impacts how the family will view their child and how they will utilize the resources available to them.
Before this law was passed, connecting with medical professionals and providing resources to them about this condition, is something I worked to bring to our local community. I have had the chance to present to various meetings with obstetricians, nurses, and midwives, and will continue this work as practitioners become more familiar with this new law. The main message I hope to convey to medical professionals is that the support, resources, and language that is used to give the diagnosis greatly impacts how the family will view their child and how they will utilize the resources available to them.
Through this work I have learned that by opening up our perspectives and working to be a resource, we are able to create systems of support that will sustain through time. They will persevere, find strength and challenges in new and unexpected ways and help transform thinking that includes all abilities and backgrounds.
Find additional Down Syndrome resources and information about the Down Syndrome Information Act at the Department of Health.
Read more about the programs at the Arc of Whatcom County.
Within Reach builds pathways to make it easier for Washington families to navigate our complex health and social service systems and connect with the resources they need to be healthy and safe.