Down Syndrome Resources in the DMV

By Gina HaglerNovember 1, 20245 Mins Read

The DMV is home to world-class health and educational institutions with resources available to meet the needs of all sorts of kids. But it can be overwhelming and daunting for parents – especially new parents facing unexpected challenges – to find the right resources at the right stage of their journey.

Washington Parent wants to help, so we’ve put together some of the many available to kids with Down syndrome and their families.

At the national level, the Global Down Syndrome Foundation (GLOBAL) provides information and links to resources throughout the U.S. The National Down Syndrome Congress (NDSC) has programs and resources that include Ages and Stages – a series of webinars and links to age-specific resources and information. At the National Down Syndrome Society (NDSS) you’ll find resources and support for all ages along with opportunities to engage in advocacy efforts. Down Syndrome Affiliates in Action (DSAIA) provides the information you’ll need to start an organization of your own. The American Academy of Pediatrics’ Healthy Children organization has an excellent guide for families of children with Down syndrome that includes recommendations by age.

Maryland

The Down Syndrome Network of Montgomery County (DSNMC) has information and links to resources throughout the entire DMV. Their expectant and new parents program provides welcome bags with books and information on Down syndrome, gifts for your baby and resources for you, along with monthly playgroups for ages birth to 3 years and new family breakfasts. There are parent-recommended healthcare providers – along with PDFs of the forms you will likely need – and educator resources. You’ll also find a monthly calendar of events that includes Teen Hangout Social Meetings (ages 13 -19 with families welcome) and community activities. Volunteer and self-advocacy sections and a video introduction round it out.
Prince George’s County Parents of Children with Down Syndrome (PODS) holds an annual Angel Walk fundraiser in the fall. There are also parent workshops for those in the Down syndrome community that include parents and caregivers along with community members. Recordings of recent workshops include those on nutrition, discussing sexuality and transitioning youth planning. There’s an excellent resources page with links to organizations, books, legal resources and other local resources.
The Arc Montgomery County provides child care for children ages 6 weeks to 10 years with developmental disabilities, support to youth up to age 21 and many other resources and educational options for individuals with intellectual and developmental disabilities and their families. The Arc Prince George’s County provides many of the same services as well as transition planning and vocational programs.

Information about special education in the public schools is available from the Special Education Resource departments at Special Education Services – Montgomery County Public Schools (MCPS) and Department of Special Education – Prince George’s County Public Schools (PCGPS).

Virginia

The Down Syndrome Association of Northern Virginia (DSANV) provides resources and support for all members of the Down syndrome community. Parent Support begins with expectant and new parent resources and information. The Parent to Parent program is there to answer specific questions – or just to talk. DSANV has a New Parent Breakfast for expectant parents and parents of kids under three, along with a set of Educational Guidelines and Summer Camp Info. There are also lists of events like the Annual Buddy Walk in the Fall, Holiday Party and Spring Picnic.
The Arc of Northern Virginia supports families with members with intellectual and developmental disabilities at every stage of life. Their Transition POINTS program provides all members of the Down syndrome community with information, resources, and vocational opportunities.
Virginia Down Syndrome Association primarily serves families in the Greater Richmond, Charlottesville, Williamsburg, Fredericksburg and Central Shenandoah Valley areas. If one of their local organizations is not near you, they will serve as your resource. They have a full range of programs and materials for parents and individuals with Down syndrome, including a virtual six-week Infant & Toddler Development Series.

Information about special education in Fairfax public schools is available from Special Education Instruction at Fairfax County Public Schools (FCPS).

District of Columbia

Children’s National Hospital in DC has a Down Syndrome Clinic. They will not only meet your child’s medical needs but also make referrals to resources in your area.

The Arc DC has a Resource page with links to a range of resources including education, family support, legal and self-advocacy for individuals with intellectual and developmental disabilities and their families. Two important programs are for supported employment and advocacy.
Information about special education in the DC public schools is available from Special Education Instruction at DC Public Schools (DCPS).

Gina Hagler is a freelance STEM writer and author. She also provides parents with family-friendly Language Arts ideas and materials at KidWrite!