Everything Starts at Home


 This week there is the Buddy Walk on Washington.  Big things are being done on the big stage.  But, what’s happening at home in your town? The local groups have their feet on the ground, working for the families of their community, helping, teaching, and reaching out.
As an example, let me tell you about the Ds group in my city, the Down Syndrome Alliance of the Midlands. As of two years ago I knew nothing, really, about what they do. So I called and…

First, They took the time to meet with me and answer my questions personally about what they are doing as an organization. Where are their fiscal priorities? What are their policy priorities and what resources do they offer families in our community? They provided open answers to these questions without doublespeak, this is very important to me.  I learned:
  1. Legislation on both a national and local levels is a top priority for the current board. The president of the local org is articulate and passionate and she backs this up with a bit of muscle.
  2. Efforts are made bring together families to support one another, via events and online groups.
  3. The local org pursued and attained grants to bring more education and top experts from around the country into our city to teach and discuss. This is offered free to families. This is HUGE to me.
  4. Membership is FREE.  (Of course the organization has  fundraising and monetary needs, but this no one is left out due to financial limitations.)



See what I mean about muscle?
All this month we on The Road have shared and are sharing notes about many of the national organizations, their goals and their work. Did you know that there is a national group that helps the local groups? Down Syndrome Affiliates in Action. The DSAIA Director Deanna Thorpe joins us today to explain:

Why the Local DSA is So Important

 It is, you know. The local Down syndrome organization is one of the most important long-term support resources for families. National organizations do a wonderful job of being there and creating resources. Online organizations are there to expand a parent’s reach to others who might live anywhere in the world. But there is no substitute for what the local DSA (when run effectively and properly) can do for the parent of a child with Down syndrome.But let’s not stop there. It’s more than just serving the parent OR the individual with Down syndrome. It’s serving the educators, the medical professionals, extended family and the community. A well-run DSA can be so much more than just the first call when a baby with Down syndrome is born. It’s ongoing, lifetime support and resources. It’s friendly faces and opportunities to gather, learn and share with others. Which reminds me a little bit of what Down Syndrome Affiliates in Action is all about…

 DSAIA is there for the local DSA just as they are there for their members. We’re here to be that friendly face, that source of information and support. We are here to connect group leaders to others who can share experiences and information. And, I have to tell you, it’s kind of amazing. Of course, we’re the friendly faces who are here for groups…and we’re happy to listen and offer support. However, the support comes in the form of training in the areas of nonprofit governance and operations. It comes in the form of information about effective programs, new technology and tools and ways to save or raise funds.

 So, as some of the local/state DSA’s are moving into three decades of service, let’s celebrate them along with new organizations forming even today. All are striving to serve their community effectively. We hope that we’ll continue to be a part of assisting them in their mission to do that. It’s amazing to watch leaders grow and learn…just as it is to watch parents grow and learn. Having done both, I can say that the local DSA has a great future…and one that is vital to the local community and will be for years to come.
– Deanna Tharpe
 *It took 24 years for me to contact my local DSA group. This doesn’t mean they weren’t bringing value to the community before, it means that then wasn’t the time for us to participate and now is.  If you have questions about your local DSA, I strongly suggest going to call and arrange to chat in person.

If you are given the time and answers, that is a great beginning. Tell them your needs, priorities and concerns. In many cases, there will be overlap. On any area that they don’t yet have resources or a plan in motion, they may know other connections to help you. And most importantly, you have told them what you and your family needs, a DSA cannot know this until you tell them. (It’s only fair.)

Every change, every idea, every milestone in history starts as a local idea.  Are you a part of your local Ds community? What do they bring to your family?