An Inspiring Week in Kansas City

This weekend, I was invited as a Board Member of DSAGC to attend the Affiliates in Action (AIA) Conference in Kansas City, MO. The event was exhilarating, exciting, inspiring, overwhelming, and fantastic. I think sometimes in Cincinnati it is easy to lose sight of the fact that, thanks to the efforts of so many, we are in the enviable position of having paid staff members who help us support people with Down syndrome - the adults, children and their families, as well as the circle of support around them, including medical professionals, educators, social workers, specialists and interventionists that work with them.

The purpose of AIA is different than any of the other National Down syndrome Organizations (and I’ll write about how I view all of them and their mission at some point soon.) AIA has a sole purpose of allowing the staff and volunteers of the well over 250 local Down syndrome affiliates across the United States to sharing the wealth of information, best practices, and efforts within their organization with each other. AIA became an official National Organization at this meeting, and Connie Hutzel is on the Board as secretary, representing Cincinnati.

The Cincinnati Team

The team from Cincinnati that went to the event included Janet Gora, Pam Rieke, Connie Hutzel, Molly, Phil and Mac Mattheis. I really enjoyed getting to know Pam, who runs our Adult Matters Program better. As the newest member of the DSAGC staff, until this trip I didn’t really know Pam. After spending time with her, I know how committed she is toward finding excellent programs for Adults with Down syndrome (like this program I heard about at AIA). She is a lot of fun to be with, and a person with a lot of positive energy and ideas for making our program (which I learned after being at the AIA meeting is very unique) the leading program for adults in the country.

Prenatal Testing and Informed Consent

I spent a lot of time with several individuals who are part of the informed decision making task force, including Mark Leach, Stephanie Meredith and Nancy Iononne. I had never met Nancy before the AIA meeting, but have communicated with her just about every day, several times a day for the past two years. Nancy and I are “Group Owners” of the Baby Center Down Syndrome Pregnancy Board. This free, online message Board is a place where mothers who have increased risk of having children with Down syndrome or mothers with a confirmed diagnosis come to learn more about Down syndrome. We deal with a number of the fears these new moms have, and help them to sort through those feelings. We also help them navigate the new and unfamiliar world of heart and medical conditions, issues of race and religion and marriage and family and the impact a child with DS will have on their lives. We also began hosting a monthly conference call where the mom’s dial in and discuss what they are going through.

The Adoption Program in Cincinnati is a most valued resource to everyone involved. Robin Steele’s work is admired so much, and pointed to across the country as something that all of the Affiliates appreciate.

There were several sessions, including one by Brian Skotko where the issues of what sort of supports and information will need to be in place nationally and locally once a non-invasive prenatal test comes onto the market. Nancy and Stephanie are working on a publication that is intended to be a “What to Expect When You are Expecting,” only with an emphasis on the factors that come into play when you are expecting a child with Down syndrome. There is much work to do with education Doctors, Nurses, Hospitals, geneticists, and perinatiologists nationally and locally. We are lucky we have a very strong support system in the person of Martha Ostendarp, and it is great to know that we will gain more insights from the other groups as to what is working and being done by other groups across the nation to supplement the things that we are already doing well locally.

Best Practices in Education

I attended a session on a program that is taking place called Partnership in Education by Amy Allison, the Executive Director of the Kansas City group. They have developed quarterly breakfasts with what they have termed “Down Syndrome Specialists” in the school districts throughout their region. The educate these specialists in best practices working with children with Down syndrome, and uses these opportunities to get to know key staff and identify people within each district who can be helpful and open to the messages of the Down syndrome group. They’ve also seen a shift amongst school districts to where they view the local Down syndrome group as a specialist, and a resource. It seems to have built a lot of good will between the association and the schools, and is a program that they have been working with other groups to develop across the country.

The other person I heard at the event was Sue Buckley speak about how she and the DownsEd group have been studying the specific ways that people with Down syndrome learn. She talked a lot about the See and Learn program that Orange County offers for free on their website (www.dsfoc.org/learning_program_registration.php), as well as a symposium they had in Kansas City a few weeks ago. I really like that they have evidence based research on their site available. If you aren’t familiar with their work, I suggest you learn more (http://www.downsed.org/)!

Research and Funding Research

Being relatively new to the world of people with Down syndrome, I was shocked to learn how low the funding for DS research has been, particularly when it comes to the National Institute of Health as it compares to other health issues. A woman from the NIH came to speak for the first time in recent years. Her advice to the DS community is to look toward the efforts of the Autism community for cues on how to mobilize and address the government to demand more research that will benefit the medical needs of Individuals with Down syndrome. There are MANY areas of DS research that need to be addressed, particularly as the population of individuals with Down syndrome is aging. Much is to be learned that will benefit not just the people with Down syndrome, but also the rest of us with the usual number of chromosome. Questions about Alzheimer’s, why people with DS tend not to get solid tumor cancers the way the typical population does, what factors influence cognition, and why do some children with DS get leukemia and have severe heart conditions and other’s don’t are just a few of the types of issues that could be addressed with good research. Funding for research (and lobbying) is a huge issue. I think, though, that there is an exciting groundswell of action that is brewing around this. If you are interested in this area, there is a great need for assistance.

Media

I heard Patricia Bauer speak about the media, social media, and how people with Down syndrome and all disabilities are portrayed in the media. The good news is that there is a shift from pity and overcoming adversity towards issues of justice, fairness and civility. There are many ways individuals locally can work to help shape the conversations – from home and from their computers. Patricia’s site is www.patriciaebauer.com/.

Money

I was struck by how much the great success of our local Buddy Walk influences DSAGC. Talking with people across the country – even individuals in large metropolitan regions with a lot of people – I realized the vast difference there is in having a paid staff who can execute programs vs. relying on parents to do the vast work that can be done to benefit our community. We all need to continually work toward maximizing what we can do with the Walk, as well as look toward creative and interesting ways to develop relationships with people who may not know anyone in their lives personally with Down syndrome, but who can be inspired by people with Down syndrome to the point where they are willing to give of themselves and their pocketbooks. I think that AIA is going to help us as an organization learn to be better at seeking out people who would be interested in planned, long term significant gifts to DSAGC that can allow us to dream big when it comes to supporting people with Down syndrome. Other areas are doing WONDERFUL things in terms of facilities built that uniquely support children and adults with DS, creating fantastic events that inspire their community. We know that people with Down syndrome can inspire. I think we need to challenge ourselves to dream big for Cincinnati, and be as smart as we can in our development efforts.

Our Local and National Government

There are many issues right now that are in front of our elected officials that can impact individuals with Down syndrome. While we were at AIA, we met with the members of ODAN, which is the Ohio Down Syndrome Advocacy Network. It was amazing to me how many local group’s met up with other’s from their state for the first time at the AIA meeting. ODAN has been in existence for a few years, and most recently has taken a map of the state of Ohio and agree who is covering which County so that there is not a single county that isn’t served by one of the groups. We learned about lobbying efforts that are coming up. Also learned the good news that there are FINALLY enough signatures for a Down Syndrome License Plate!

Nationally there are issues like the aforementioned research funding, programs that will allow families to save money for their children with Special needs, the restraint bill, that are on the horizon. This is an area where the voices of individuals with Down syndrome and their parents and loved ones can make a difference.

Karaoke and More

So, now you’ve read what I personally did at AIA. Janet, Pam and Connie all attended different sessions than I did – imagine how much information we all received that we can share to improve DSAGC. The last night of the event featured AIA Idol – which is the Affiliates in Actions tribute to American Idol. I decided to sing – knowing that a trip to next year’s AIA was the prize that was going to be awarded. Janet Gora, our very witty and fearless leader, Dr. Brian Skotko, and Joe Meares from the D.A.D.S. Group all were the judges. I wish I could say I won, but I tied with a woman from Dallas. We had a sing off, and she won (a contributing factor being that there were about 20 people in the room from Texas.) I got second place and a $100 gift card that is now in the hands of Pam to use for the Adult matters program. I have assurances from Janet that next year (if I’m lucky enough to attend AIA again) we will stack the odds in my favor by brining many more people from the state of Ohio to AIA.

On Sunday, we got to attend the World Down Syndrome Awareness Event in Kansas City. They had a WONDERFUL turn out for the event which featured adult advocates telling about their lives, Radio Disney, prizes, vendor booths, face painters and more.  Kansas City was a wonder host city for this event! I had such a great time from the beautiful opening reception to the last minute of the World Down Syndrome Day Event! 

What Can YOU do to help people with Down syndrome?
What DO YOU do to help people with Down syndrome!?
There are so many ways to help - some involve time, some involved money.  I strongly suggest that if you haven't already, contact your local DS group and ask what they need!  I'm happy to help connect anyone with a group if they are interested. 

What do you do right now in your area? What programs do you think are the best where you live?

Thanks for reading about my trip! If you can't tell, I left inspired!