DS Group Therapy

By Deanna Tharpe, DSAIA Executive Director

I put down my Android Karenina book last night (yes, same series as Pride and Prejudice and Zombies) to read a leadership book I had downloaded from the local library.  (By the way, I just want to thank my hubby for my tablet because I think I’ve read more in the last 6 months than in the past 6 years.)  The author spoke of getting out of your comfort zone and how even when we do, sometimes we don’t really go anywhere or do anything because we tend to rely on our same old crutches.   That made me think of our conference attendees.

I’m ecstatic that we have over 225 attendees registered for the conference.  I truly hope that they learn a ton of stuff and go back home trying to process it all.  But more than that…I hope that they get outside of their comfort zone a little and drop the crutches.  I’ve heard groups tell me “we’re just too small to do that type of program” and don’t attend the session.  Or what about the group that says “we just don’t have enough money to do all the things we want to do”.  FYI:  No one EVER has enough money to do all the things they want to do.  But to you small groups out there…throw away that “small group” mentality crutch and look around.  Small groups CAN do big things.  And for those groups who don’t have enough money…make a real investment in your organization’s future by attending one of the DOZEN fundraising-focused sessions at this year’s conference.  And then…follow through when you get back home.

And if you are not sure about a session, then ask the presenter some questions!  You can do that in advance this year by getting involved in our online community and messaging speakers.  One attendee told me she was able to find out more about a session (whether it was above or below her knowledge level) just by asking the speaker.  It helped her continue to pick her sessions and not schedule one where she already knew everything.  Hallelujah! 

Yes, getting out of your comfort zone is difficult and when you do those crutches feel like old friends.  But crutches don’t let you run with the pack or even come out in the lead.  You are attending the conference because you are a leader.  And when you realize that, you are already halfway there.  See you in DC!

By Deanna Tharpe, DSAIA Executive Director

We preach inclusion and equal treatment in the Down syndrome community, but time and time again I meet groups with nothing but parents on their boards and nothing but parents organizing events and fundraisers.  A board member came to me one time long ago and told me that they were leaving the board because they felt ostracized at every meeting.  They explained that as a business owner, they felt that their talents and experiences would benefit the organization.  However, at each meeting their comments were regarded with disdain and they felt it was because they did not have a child with Down syndrome.  Whether this was actually the case or not, we all know that perception is reality.  How sad that this wonderful resource took their toys and went home because they felt that we were not accepting of those different than us. 

That is why I’m so excited that we have a session devoted to that topic at the upcoming DSAIA Leadership Conference.  Janet Gora, Executive Director of the DSA of Greater Cincinnati, is leading a group of panelists in “Count Me In:  How People Without a Connection To Down Syndrome Want To And Can Benefit Your Organization” twice during the event.  You’ll hear from the panel about how they involve people without blood ties to people with DS in their organization. Then you can join in a discussion about the benefits and barriers and finally learn how to recruit, train and support those without children with Down syndrome in a variety of ways in your organization.  I’m so pleased that Janet is giving attendees this opportunity because it couldn’t be needed more. 

Now, you may think that my example is unique.  I assure you it is not.  Let me share some experiences of others from the upcoming breakout session:

• When it came up that I was not a parent of a child with Down syndrome, the mom said, “I’m so sorry.”  It made me feel like an outsider and kind of strange.
• When I attend an event and someone asks if I have a child with Ds, and I say, "no," sometimes that ends the conversation.  
• To be honest- I always felt like there is a sense of why are you here? It would go a long ways to be more accepting and encouraging of those that serve on the Board without blood ties.

By Deanna Tharpe, DSAIA Executive Director

Over the last few weeks, I have had the opportunity to spend some quality time with Down syndrome groups across the country.  A couple of weeks ago, I was in Georgia.  I spent some time in Tennessee and even made a little time in Texas last week.  Yesterday, I was on the East Coast visiting with a member.  Today, Joe Meares (DSAIA Board President) and I are visiting with a group in Indiana.  I’m going to New York on Thursday.  No, I haven’t been jet-setting.  Actually, I’ve been using webinar technology to talk to groups about DSAIA’s resources and how to access them. 

For current affiliates, I’m doing “refresher” courses for board and staff.  For groups considering membership, I’m giving them an up-close and personal tour of the website and answering questions/concerns.  And it’s made me realize how important it is for us to offer this type of opportunity to our current members.  Many of our groups only have one or two people with access to DSAIA resources.  Why is that, I wondered?  I always encourage our members to add their entire board and any committee chairs to the system.  But then, some groups have everyone in the system and only a few are accessing it.  Then an affiliate leader asked if they could give their log-in to another person in their group….what?  Yes!  Well, NO!  They should have their own access!  And better yet, let me show you how to take control of your membership, revise your list yourself, give everyone in your leadership individual access, and make the most of your investment.  (But I digress….)

Although I would love to hop a plane and visit with groups in person, I think we have found a way to have those personal discussions without the airfare cost.  And that is why I’d like to come visit your group ‘virtually’.  We can even video chat!  Beginning in March, I’m scheduling a monthly “visit” for those members who would like a tour of the “facility” or would just like to get to know DSAIA or me better.  It’ll be limited to fifteen attendees each session, a group small enough to allow open conversation and even – yes – video chat!  It’ll be at the same day and time each month.  Think of your new walk chair or staff member…just have them attend the monthly “tour” and they’ll be up to speed on DSAIA resources and ready to go!  And if your entire board needs a “tour”, then I can schedule a meeting just for your group at a day/time convenient for all of you.  Look for more details on the first session in our March newsletter.  In the meantime, I’m getting ready (and very excited) to see lots of you in person at the conference in two weeks.  See you in DC – and online – very soon! 

By Deanna Tharpe, DSAIA Executive Director

This is my “committee week.”  Or at least, that is what I call it.  As an ED I really only chair one committee; however I try to attend all committee meetings when I can.  And it just so happens that normally all of the DSAIA committees meet during the second week of the month.  So I’ve affectionately named it so. 

To be honest, I have not always been a fan of committees.  Sometimes, committees can be utterly fantastic.  They develop a good plan, they recruit productive members, and they execute their plan with amazing results.  And then….there are the other kind.  We’ve all been on THOSE committees.  They are the ones where the ED or Board President finally steps in and says “Never mind – I’ll do it.”  The neat thing about DSAIA committees – they’re all made up of leaders!  It’s awesome!  So, I can see where some of our members might have lost faith in the role committees play in their organization. 

I read this great article today (compliments of Wild Apricot) from Patricia Hudson of the Melos Institute, where she suggests that it’s not the structure that’s lacking, but the need for “establishing some basic principles and practices for committee effectiveness.”  So, the 'too busy to prepare for meetings', 'too busy to pay attention at meetings', and 'too busy to follow-up afterwards' excuses that would otherwise make us think that committees are a waste of time may not be valid notions at all.

Hudson says the key is to understand a few basic principles:

• competent committee management and productive meeting management (yes, they are different).
• a recognition that associations are a talent pool; that everyone involved in the process has a desire and the potential to succeed but often lacks the skills or experience necessary to do so.
• attitudes and an organizational culture that believes in empowering those involved to become adept in their role.

Good meeting management can dispel your belief that members are no longer interested in being a part of a committee.  Hudson says that their frequent complaint is that “meetings too often deal with superficial issues, lacking any real opportunity to make a difference.”

So, if you are not creating opportunities for members to become actively engaged (through committees), then you are losing out on the power to tap into that vast talent pool full of connections into a professional network that could benefit your organization.

You can read the entire Melos Institute article (PDF) here. 

Do you have good, action-oriented, productive committees in your organization?  Are you looking for more help to perform effective committee management?  Comment!  We want to hear from you.  And if you are interested in being involved in one of those terrific DSAIA committees, contact me!  (I've got connections and I can set you up...)

(Special thanks to Wild Apricot for their wonderful blog posts who never fails to point us in the right direction!)

By Robbin Lyons, DSAIA Board Member & Conference Chair

When I was a child, my grandfather lived across the street from a candy store, the kind that sold penny candy and sodas.  We lived far away and only visited once a year, but each time we did, my grandfather would take me by the hand and walk me to the candy shop.  There he’d hand me an empty display box and walk me down the isle of the penny candies.  As we walked, he’d let me grab a little of each kind of candy and fill my box to overflowing!  There were some kinds I’d grab a huge handful of, some I’d just take one or two, yet others, I’d skip all together.  In the end, I had a box of treats that was my own little collection just perfect for me.  

Thinking about the conference this year reminds me of those days.  You can still choose to pick and choose from a variety of topics in search of something new to bring to your group.  Or if you want a little more, say you have been to some basic training at a conference in the past or attended a beginning level webinar and want to learn a little more, you can dig deeper as we offer both 101 and 202 level training sessions.  Or grab that whole handful as you immerse yourself in one subject by following one of our education tracks on a variety of subjects, like Prenatal Diagnosis & Medical Outreach, Board Development, Finance, Self Advocacy or you can still choose to pick and choose from a variety of topics in search of something new to bring to your group.  Sweetest of all we have brought in experts in Non-Profit Management and Development from outside the Down syndrome community, so you can get a fresh take on ideas for running your organization.  In the end you get to go home with a box of goodies that’s just right for you!

Registration is still available and includes both DSAIA Conference & Buddy Walk on Washington events - but only for a limited time!  Register today at: www.dsaia.org/attendees 

By Dr. Bev Browning, Vice-President of eCivis and bestselling author of Grantwriting for Dummies

Did you know that major corporations have created community reinvestment or social responsibility programs for grantmaking purposes? These corporate grantmakers are mandated to allocate at least 5 percent of their annual profits toward their corporate foundations. For big-name corporations, this can be a hefty amount. How does this help your organization or agency? It means that you can expand your realm of potential funders to meet some of those smaller line item needs.

Who Are the Top Corporate Grantmakers?

Each year, the Foundation Center compiles a list of the top 50 corporate grantmakers. Some of the big grantmakers are:

‘ The Wal-Mart Foundation

‘ The Bank of America Charitable Foundation

‘ The JPMorgan Chase Foundation

‘ Nationwide Foundation

‘ The Allstate Foundation

How Do You Approach Potential Corporate Grantmakers?

Once you start perusing potential corporate grantmakers, it’s important that you read and understand their grantmaking guidelines. Here are some questions to ask yourself in order to determine whether the potential grantmaker is an appropriate funding match for your needs:

Will this grantmaker fund in my state, county, city?

If yes, keep researching. If no, be sure to call to double-check that the grantmaker’s website is up to date and determine that they will not fund in your locale. Before hanging up, ask if they can recommend any other corporate foundations that might be interested in making an investment in your community.

Does this grantmaker have a current funding priority or past history of awarding grants for projects like mine?

If yes, continue your research. If no, call the potential funder anyway. Making contact with any funder will help you open up a conversation about ideas that they have not considered or else will lead to them giving you the names of other potential funders.

Are the grants that this grantmaker has awarded within the funding range of the funds we need to implement, expand, or evaluate our project or program?

If yes, you’re ready to determine how the grantmaker wants to be contacted initially. If no, take a thorough look at your project’s individual line item expenses. Ask yourself if any one line item can be funded as a stand-alone component of the entire project. If it can be, then prepare your letter of inquiry based on the one line item need that fits the grantmaker’s funding priority and range of grant awards.

What Is the Outline of Your Telephone Call to a Potential Corporate Funder?

1. Ask for the program officer who reviews grant proposals in your specific area of funding. Remember, you reviewed the grantmaker’s funding priorities in advance of this call and you are able to quickly name an area of funding that allows you to be transferred to the appropriate corporate foundation program officer.

To read more of this post, visit our Online Conference Community: http://dsaia.pathable.com/#discussions/6070

And be sure and catch Dr. Browning in action at the 2012 DSAIA Conference in DC!  See the entire schedule here:  http://dsaia.pathable.com/#meetings

By Jane Page-Steiner, President, JPS Nonprofit Strategies

Last year I attended the National BoardSource conference in Orlando, while there I met board researcher, Mary Hiland, Ph.D of Hiland Associates.  Recently she shared with me the results of a small study she conducted with nonprofit boards.  The study focused on the life cycle of boards and board development.  While this was a small study I think it produced some interesting preliminary findings. 
 
Study participants identified three critical factors that influenced or drove board development and change: 

1.Outside governance expertise or training– a “nudge” during a facilitated board training or a board member attendance at an outside training contributed to a new vision of the board.

2. The Board Chair- critical in creating (or inhibiting) movement and building momentum for change, in partnership with the executive director. The board chair usually engaged a few other board members, building a small group of champions for change.

3. Intention- Study participants described a specific, articulated intention to develop the board: ”We were obsessed with board development.” “Status quo was not OK.”

Is your board producing the results you need to achieve your organizational goals and mission?  Does your board understand the needs of the organization and have the ability to work as a collective group to plan and implement strategies?   Does your organization help each board member to bring their best skills, connections and resources to the organization?  

What have been your experiences with your board? 

Jane is the first presenter in the DSAIA Board Development Webinar Series which begins tonight (Jan 17^th) at 8 pm Eastern.  Tonight’s presentation is entitled “Board Development 101”.  DSAIA members are encouraged to register their entire board for this valuable training.  Attendees who complete all six sessions will receive a Certificate of Completion.  Registrations will be taken until 30 minutes prior to the webinar.  To register or to see the complete list of topics in the series, go to www.dsaia.org/webinars. 

You can also attend one of her presentations at the upcoming DSAIA conference in DC Feb 29-Mar 3, 2012.  To view the sessions, go to http://dsaia.pathable.com/#meetings. 

Visit Jane’s website at www.jpsnonprofit.com, follow her on Twitter at https://twitter.com/#!/jpsnonprofit, or visit her Facebook page at https://www.facebook.com/#!/JPSNonprofit.  

By Deanna Tharpe, DSAIA Executive Director

Do you suffer from paraskevidekatriaphobia (the fear of Friday the 13^th)?  This Friday some people will be so paralyzed with fear they simply won't get out of bed. Others will steadfastly refuse to fly on an airplane, buy a house, or act on a hot stock tip. It's Friday the 13th, and they're freaked out.  "It's been estimated that [U.S] $800 or $900 million is lost in business on this day because people will not fly or do business they would normally do," said one expert. 

How did we get to this point?  If you believe some legends, it started as far back as the Vikings.  As the story goes, twelve gods were invited to a banquet at Valhalla. Loki, the Evil One, (god of mischief) had been left off the guest list but crashed the party, bringing the total number of attendees to thirteen. True to character, Loki incited Hod (the blind god of darkness and winter) into attacking Balder the Good (fairest of the gods). Hod took a spear of mistletoe offered by Loki and obediently hurled it at Balder, killing him instantly. All Valhalla grieved. This tale apparently explains why the Norse themselves adhere to the belief that thirteen people at a dinner party is just plain bad luck.

The Dan Brown novel The Da Vinci Code and the movie of the same name, popularized the thought that the superstition is tied to the mass arrest of the Knights Templar. Secretly ordered by King Philip of France, (and Holy Roman Emperor, Pope Clement V) the mass arrest, of all the Knights Templar in France happened on Friday, October 13, 1307. The eventual condemnation, and eradication of the Knights Templar was to follow. The King of France and the Pope got the spoils, and a date was cemented in time.

This “Friday the 13^th” DSAIA has come up with a way to make it not so “unlucky”.   DSAIA is extending the Early Bird conference deadline through Friday, January 13, 2012.  You have a few more days to round up your conference attendees and register them for the DC conference while still getting the additional $100 discount.  Of course, DSAIA members will also still receive the $200 member discount.  If you are not a member, you might consider this fact:  Bring 5 people to the conference and you could pay for a year’s dues with your savings!  See, it’s getting luckier all the time!

So, get rid of that paraskevidekatriaphobia by getting registered this week for the conference and move on to a REAL fear:  voorheesaphobia (the fear that they’ll make yet another Friday the 13^th movie). 

Registration is available online at www.dsaia.org/attendees. You can view the breakout session schedule here. 

By Deanna Tharpe, DSAIA Executive Director

Like many of you over the last couple of weeks, I have spent some time reflecting on 2011 and planning ahead for 2012.  Just after Christmas, we lost a family member.  My cousin Michael, who was 55 and had Down syndrome, lost his battle with leukemia.  I wish I had been able to spend more time with him, but it was always great to hear childhood stories from my mother. 

In reflection, I can’t help but compare Michael’s life to my own son’s and how their opportunities and experiences will be different.  Fifty-five years ago, it was unusual to choose to keep a child at home rather than place him in a state “home”.  Except for a brief time in a specialized assisted-living community, Michael lived at home with his parents.  I can’t help but wonder how their “choices” were presented to them at Michael’s birth.  When I last saw Michael back in 2010 before I moved from Texas, his dad commented on how great Joel was doing and how much progress the world had made since Michael was Joel’s age. 

He was certainly on target there:  medical advances, educational advances, inclusion, awareness.  Although professionals have helped us make leaps and bounds, it’s the creation and the evolution of the local Down syndrome parent group that I find the most fascinating.  Groups are celebrating thirty and forty years serving their community, and yet new groups are still forming every day because of the need in their area.  Where would the greater DS community be without the contributions of these local organizations?  Would we have successful programs like prenatal/new parent outreach, medical outreach, educator support, teen/adult services, employment support and the like? 

The DS community is lucky to have such great leaders at the national (and international) level, but even more fortunate to have such great leaders in each and every local organization across the country.  So, as we reflect together, let’s remember that your group plays an important part in the life of a parent who is making big (and life-altering) decisions every day.  Yes, it is a heavy responsibility to carry as a group leader, but DSAIA knows that you are up to the challenge.  And so are we.

And that is where the planning comes in.  DSAIA is comprised of groups who are facing (or who have already faced) the same challenges as you are currently.  Some leaders are parents, some are not, but all are working toward the same goal.  As you play a role in the lives of individuals with Down syndrome, we hope that you will allow us to provide a different type of support to you as group leaders.  In 2012, let’s not forget where we were as little as fifty years ago when Michael was a child.  We’ve come a long way but we have a long way still to go.  DSAIA is excited to be on that journey with you, as I am personally.  Happy New Year! 

By Deanna Tharpe, DSAIA Executive Director

What a great holiday!  I realize many of you have packed it in for the year, spending time with your family and putting everything on “auto-pilot” through the 1st.  Although it sounds like a great plan, you may be allowing funding to slip through the cracks.  Did you know that donors are looking for last-minute donation opportunities for 2011?  Tax deductions are a big part of this.  What else could be responsible for Network for Good processing 10% of annual donations in the last two days of the year with a significant spike between Noon and 7pm on December 31st?

Here are some simple year-end fundraising tips... you just need:

•·         A good email list

•·         A good email program

•·         Donation button capability on your website

Update your website with Holiday News!  Post pictures from holiday celebrations (featuring your members with Down syndrome) on your site!  Provide an update on needs you hope to fill in 2012 on your website.  Make it short and concise because your reader’s attention is short as well.  Think Bullet Points!  Put that featured holiday message on the homepage – not buried somewhere several clicks away.  Remember that short attention span?

Did you know that online giving grew 14% last year despite a difficult economy?  Is your ‘Donate Now’ button (remember, you are supposed to have one?) hidden or too small?  Have your webmaster correct that today!  Remember, make it easy to donate! 

Use FaceBook for more than Words with Friends.  Write some FaceBook updates with pictures today but schedule them to post throughout this week.  It’ll be good to show up on your fans NewsFeeds all week – when they are playing around on FaceBook (probably on Words with Friends).  Use Hootsuite or TweetDeck to help you schedule them NOW for posting LATER.

Send a brief (BRIEF) email to everyone before New Year’s Eve with a reminder that there is still time to make their 2011 donation – and it’s the last chance to get a tax donation this year.  Reinforce your key message of what you want to accomplish in 2012 using the bullet points you developed for your website earlier.  Have the ‘Donate Now’ button prominent in your email communication.  (Don’t make them go to your website to donate….you have to make it EASY!!!)

And after you have done a great job strengthening your year-end fundraising, be sure and view some of the great archived webinars in the DSAIA Repository including:

Creative Fundraising Strategies for 2011(still great ideas for 2012!)

Grant Writing for Dummies (a 6-week video course to get you started!)

Happy Fundraising and Happy Holidays from DSAIA!!!