A couple just learned that their newborn child has Down syndrome. A couple in their eighties has a 48-year-old child on the Autism spectrum who lives with and relies on them for his support. These folks and thousands more throughout Northern Virginia need ways to help their child manage throughout their lives. Individuals who experience intellectual and developmental disabilities (I/DD) have a right to live A Life Like Yours (ALLY). Consider the challenges those individuals and families face in meeting education needs, financial needs, medical issues and, as they age, employment, housing, self-reliance and more.
With 7-8 million individuals with I/DD across the country, there exists a critical need to address these topics and provide true caring for the I/DD community.
• 80% don’t have enough money for care.
• 75% can’t find after-school care, community services or summer activities.
• Only 15% of adults with I/DD have jobs.
• 59% say they don’t have enough information or help to create a long-term plan.
Data excerpted from FINDS Survey (Families and Individual Needs for Disability Supports) 2010
One major driving force addressing those concerns in our area is The Arc of Northern Virginia. The Arc of the United States says they may be “one of the largest charities you’ve never heard of” even though they have been in existence for 65 years and The Arc of Northern Virginia, one of 700 local chapters across the country, has been serving families for 52 years.
The overarching principle guiding The Arc of Northern Virginia is to help the 16,000 Northern Virginia individuals with I/DD and their families in every way possible. This small 16-person band of dedicated employees is passionate about reaching, communicating with, and guiding the I/DD community through the labyrinth of government policies and procedures to extract services and support for their intended users.
According to Executive Director Ricki Epstein, The Arc of Northern Virginia is poised to be “a one-stop hub for I/DD families. We have the inside skinny on where to go, and there are plenty of people who need to figure out the available services. They need to know they can contact us with their questions. Often they know they need something but don’t know what it is. They simply know their life isn’t working.”
The calls are definitely arriving – our local Arc fields 4000 information and referral calls annually and the staff will spend as much time on the phone as is needed, helping families assess their situation and pointing them to the right resources. Using the numerous calls, the staff constantly searches for more comprehensive ways to be of service. This has led to numerous FREE programs like the Lunch Bunch, a small group information and referral session that is offered every other Tuesday all year, where families can learn from the staff as well as each other.
Other efforts to reach out include the monthly People First and ALLY Toastmasters for self-advocates, People First for Young Adults - a social and self-advocacy group for youth (ages 14-26) with disabilities, a Life Planning Tools workshop, a Transition to Employment workshop for youth ages 14-22, and more. In short, if a need is identified that can impact a larger audience this fervent group starts planning another workshop!
Out of all their efforts a program has evolved entitled Transition POINTS (Providing Opportunities, Information, Networking, and Transition Support) that addresses the multitude of issues that individuals and families face as the individual advances through life and is faced with new challenges.
Director of Advocacy Lucy Beadnell notes that Virginia consistently ranks 47th or lower in the nation in providing community supports that can enhance the lives of the individuals with I/DD and their families. The average waiting time for an individual to receive services once requested is five to six years. Some support is given while children are in school, but when they “age out” at 22, no further services are mandated.
These dire facts mean that 1) the Arc needs to reach families to begin the process when the children are as young as possible, 2) strong advocacy and education is critical to improving awareness of the need for I/DD support and, 3) as Ms. Beadnell says, “innovating is a huge part of the job.” The staff simply perseveres to find the answers that will help their clients.
Funding for The Arc of Northern Virginia is provided partially through private foundation grants, partially through memberships, and also through special events. They recently held their 36th annual Patriots’ Cup road race. The annual fund-raising Gala, An Evening Under the Stars” will be Saturday, October 18th at the Hilton McLean Tysons Corner.
How Can You Help?
There are numerous opportunities to support this worthy organization both financially and by giving your time and talents.
- Become a member. Memberships include Individual at $25, Family at $50, Non-profit Organization for $100, or Business Member for $250.
- Make a financial contribution, including through your United Way Campaign.
- Participate in the events. It is not too early to reserve your seats for the Gala.
- Donate your car
- Volunteer or serve on a committee. Those fluent in other languages can help translate materials, or one might be an administrative volunteer. Special events like road races and galas can use lots of extra helpers.
For more information, please visit TheArcofNoVa.org or call 703-208-1119.