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All We Learned About Being a Great Down Syndrome Group, We Learned From DSAIA

Tue, April 30, 2013 1:04 PM | Anonymous member (Administrator)

By Laurie Kowalski, New Family & Support Coordinator, Upside of Downs of Northeast Ohio

I must admit, I was clueless before I attended my first DSAIA Annual Conference in 2010.  I really didn’t know what to expect at all.  I had only been an employee of my group for a few months at that point.  I had volunteered a few hours a month before that, but we were an all parent volunteer group for so many years and being parents of children with Down syndrome, we didn’t have a lot of time to dedicate to the group.  We had recently hired an Executive Director and she had encouraged me to come along on the trip to Kansas City.

I was amazed and overwhelmed at how much information there was tolearn about that year!  Each group had a table with all of their publications that were available for us to take and use as a template for our own group.  Was this stealing? I kept asking this over and over.  No, it is sharing-- that is what the DSAIA is all about.  It is a place where Down Syndrome Affiliates from all over the country and other parts of the world can share ideas, materials and support one another in the common cause of helping families with children and adults with Down syndrome. 

I came home that year with my head spinning!  Great ideas were swirling around in my mind on how we can be the premier resource for Down syndrome in Northeast Ohio.  I immediately started focusing on new parents and how we can best help them with support and information.  I worked on a New Parent Packet that has evolved into a beautiful package that our new and expectant packets have told me that they are so happy to get. We used to mail a huge box of books with no personal follow-up or support and it was overwhelming to the new parents and frankly, depressing.   Would I have been able to do this without the help and support of DSAIA?  Maybe, but it would have taken me a lot longer and I don’t think it would have been as nice.  It is not that we copy ideas verbatim from other groups, we just see what others have done and put our own spin on them.


I then focused on the Medical Outreach program.  I learned what other groups around the country are doing and worked with our Board of Directors to get this program up and running in our area.  I am pleased to report that we have hired a Medical Outreach Coordinator to work on this mission.  This would not have happened had it not been for DSAIA. 

It’s not just the annual conference that supports us though.  We are regularly attending webinars on a huge variety of topics, we use the repository for everything from power point presentations on Medical Outreach programs, sample budgets, employee manuals, brochures, etc.  Past webinars are also on there on so many subjects from Social Media, Board Relations, Grant Writing, How to Improve your Walks, etc.  Why reinvent the wheel when someone has already done it for you?  I feel that it has saved us tremendous time, energy and money.  Other groups are very open and generous in wanting to help other groups be just as great as they are so why not take advantage of it?

I have attended the annual conference every year since and I wouldn’t miss it for the world!  The sharing, networking and learning are invaluable for any size organization in being the best that they can be.  Our group has learned so much from our participation.  We have added so many new programs since starting; New Parent Celebration Day, Baby Bootie Program, New Parent package, hospital program, Kindergarten Readiness Program, Disability Awareness Program in schools, Teacher and Paraprofessional Training about Down Syndrome, D.A.D.S. group and Down Syndrome/Autism Support group.  Every year we learn new and exciting ways to help our members.  I think belonging to the DSAIA is a great investment that we have made as an organization and I am very glad to have this resource available to us.


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I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio

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