No Child Left Behind

The Arc of Northern Virginia, USA

Katherine Hughes on December 13, 2018 in Education

Anyone who has a family member with a disability understand help, support, and advocacy are crucial. This is especially true for those with intellectual or developmental disabilities, such as Down Syndrome or Autism. Between 1% and 3% of people in the United States have a developmental disability, which can occur from genetic conditions or problems during a pregnancy, birth, or throughout life. The Arc, which was founded in 1962, supports individuals and families affected through education, advocacy, and services.

The Arc classifies intellectual disabilities as below-average cognitive ability as shown by a low score on an I.Q. test; limitations in life activities, such as socializing or communicating; and the onset of the disability before the age of 18. Developmental disability is a term that can include intellectual disabilities and other disorders, such as epilepsy or cerebral palsy. The Arc supports individuals and families affected by these disorders by providing support at key “Transition POINTS”. These points include life shortly after birth or diagnosis, navigating the school system, adjusting to adult life, finding employment, housing, and aging with a disability.

Diane Monnig, the Transition Manager for The Arc of Northern Virginia, helps families going through these transition points, especially from K-12 education to adult life. “A lot of what I do is work with local school systems and families who are getting ready to transition out of high school into the adult world. What is difficult about it is that if you have an intellectual and developmental disability, it is federally mandated that you are provided with school services. Once you leave the school system, federal services are no longer mandated. So then in order to get support, you have to apply for and be found eligible. Also, there has to be funding availability. I do a lot of workshops for families about how to access services and what kind of services are out there,” she said. She manages a team who organizes these workshops and writes resource guides which are posted on their website for families.

In the last year, The Arc was able to obtain a grant from the Virginia Board for People with Disabilities to translate their resource guides into five languages which are commonly spoken in Northern Virginia: Spanish, Vietnamese, Korean, Chinese, and Arabic. Besides making the resource guides more accessible, The Arc has also worked to expand its outreach. Last year, they created a YouTube channel to make the information from their workshops more accessible and have updated their website to make it more user-friendly.

Although these changes go a long way, The Arc is focused helping individuals with intellectual disabilities sooner in a child’s life. “We hear from families when their student is a teenager or beyond, in their 20s, because they heard about us as they were transitioning out of high school. What we hear from families a lot is ‘I wish I knew you sooner,’ because we have lots of resources for support and can connect people to different resources and help educate families to plan better for the future. What we need to do a better job of is reaching families sooner, soon after diagnosis.” However, Mrs. Monnig says The Arc of Northern Virginia will continue to work on expanding their outreach to better support families.

The Arc also advocates for its families at the State Congress in Richmond, Virginia, and encourages State Representatives to introduce and support legislation to help those with intellectual and developmental disabilities. You can support The Arc in this effort by writing or calling a Virginia State Congressperson. You can also support The Arc of Northern Virginia by visiting their website https://thearcofnova.org, or The National Arc at https://www.thearc.org. There, you can find information on becoming a member, volunteering, donating and more.

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