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Welcome to the DSAIA Blog!

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DSAIA welcomes guest bloggers.  Have something to share that will benefit the local/regional Down syndrome organization? Contact us today at info@dsaia.org! 

  • Mon, July 06, 2015 11:38 AM | Deanna Tharpe (Administrator)

    By Amy Van Bergen, Executive Director of Down Syndrome Association of Central Florida

    But I’m just a mom. I’m just a volunteer. I’m just a [accountant, lawyer, teacher or other fill-in-the-blank community member] and not a parent of a child with Down syndrome. I’m not a numbers person. I don’t ask for money or understand budgets. That’s someone else’s problem.

    We are all “just” something when it comes to our DS support groups. But we need to embrace who we are, what we bring to the table and not belittle our own role and responsibilities by thinking of ourselves as “just” anything or anyone. And regardless of our skills (or lack thereof), we have to stop passing the buck to others.

    There was no one more ignorant about Down syndrome than I was 24 years ago when my son was born. And just like so many of our families we serve, I learned. And when, after an extensive interview process, I was hired in 2002 as my local group’s first executive director, I felt like an imposter. What did I know about running a nonprofit? And so I learned. I went to classes and workshops and relied on some experienced mentors. It was all about what we call professional development. It was learning, plain and simple.

    To me, that’s what DSAIA is all about—learning to be better, for ourselves, for our organizations, for the individuals and families we serve and for the Down Syndrome Movement itself.

    Decades ago there were very few DS support groups around the country. Now there are an estimated 200+. Just like the people we serve, we don’t all look alike, sound alike or act alike. But like nonprofits everywhere, we have an obligation to our donors and those we serve to learn….and keep on learning.

    Ignorance is not an excuse for treating people with Down syndrome as second-class citizens (or worse.) It’s also not an excuse for allowing others to mismanage our organizations. We owe it to ourselves to run our nonprofits as professional and ethical organizations. We owe it to our donors and families, too.

    Many of us and our fellow board members, staff and volunteers came to our organizations with little experience in the world of nonprofits. So we owe it to them to provide those learning opportunities and to confess our own areas of ignorance.

    So what are YOU going to do this week to bring learning opportunities to yourself or your fellow leaders? Are you participating in a webinar or signing up for a local philanthropy or foundation center workshop? Joining a local or national leaders’ circle? Seeking out someone who will formally mentor you? Because no matter who you “just” are, the buck stops here, with you. Today.



  • Thu, June 04, 2015 11:44 AM | Deanna Tharpe (Administrator)

    Guest blogger:  Christy Proctor

    When I was given my daughter’s pre-term diagnosis of Down syndrome, I went through every emotion known to man. Looking back, I now believe the fear was caused by lack of knowledge. I’d never met anyone with Down syndrome and didn’t know anything about what caused it. But I was determined to learn as much as I could to prepare myself for her birth.

    That was the first time I came across “people-first language.” I thought, really? What is that? Why does it matter? Little did I know how important that phrase would soon be.

    After Isabella was born, she instantly became the teacher. I was the pupil. When she was 2 months old, I started a Facebook page for her, hoping we could share our journey and learn from others.

    I am often asked about why I share my daughter on social media. The answer is this: Although she has Down syndrome, I want people to know she’s still a baby.

    Many times since Isabella’s birth, I’ve heard the term “Downs baby” by people who genuinely mean no harm. But if you saw a baby with cancer, would you refer to that child as “cancer baby”? I hope not.

    Please let me remind you: She’s a baby, that’s it. A baby with Down syndrome. A baby who laughs, cries, brings joy to others and overcomes any obstacle she faces.

    Does Down syndrome also bring adversity? It’s all in how you look at it. Do you see a glass half full or half empty? Do you see a problem or an opportunity? I see Down syndrome as an opportunity to learn, to teach and to love.

    We love all of her followers and I enjoy sharing Izzy’s pictures, challenges and successes each day. However, it’s about more than that. “Downs baby” is hurtful, and I would not be doing my job as her mother or as an advocate if I didn’t make that clear. But that’s why I and many others in this community do what we do — to teach and educate others.

    Be kind, think before you speak and remember: “I’m Isabella, I have Down syndrome. I’m not a Downs baby, I’m Isabella.”

    A version of this post originally appeared on Isabella “Amazing” Grace‘s Facebook page. You can find it here:https://www.facebook.com/MyDsJourney.IsabellaGrace/photos/a.296864540498445.1073741832.292927624225470/415277821990449/?l=5ee3efca3f


  • Mon, June 01, 2015 4:54 PM | Deanna Tharpe (Administrator)

    Posted by James Ha on May 11, 2015 6:00:00 AM


    When I talk to public sector leaders, the subject that comes up most often is the need for sustainability.  Transparency, accountability, and more efficient government are important goals, but they are diminished if solutions to achieve them cannot be sustained. So, truly innovative technology solutions must account for sustainability. Local government leaders often ask me what they should look for in technology solutions. Based on my experience in grants management, I share with them three attributes that define what I call sustainable software.


    Support.  I don’t mean technical support. When working with technology partners, look for dedicated support.  Grants management is not a widely understood process. I have yet to meet someone that graduated with a degree in grants management. Also, consider how many certified accountants there are versus certified grant managers. This gap in expertise also highlights a key reality about the level of experience among grant management personnel in the public sector. That is, most are new to grant research and administration. And because many of these same people are also managing other duties, support and training are critical.   


    Look for partners with dedicated support staff that will get to know your team and processes. This allows new and transitioning personnel to share critical policies, procedures, and files with someone who understands and can bridge the knowledge gap. If there is a sudden change in personnel, for example, dedicated support teams can make an organization aware of critical timelines and missed activities. I’ve had dozens of conversations with leaders who tell me that their grants manager retired before a replacement could properly be identified. The end result: Grant funds are not spent, and reimbursements are not requested. In many cases, the cost of such oversights is in the millions. Roughly $100 billion in federal funding is mismanaged yearly in the United States (1 out of 6 dollars). Dedicated support should be a requirement, not an option.


    Collaboration. To be a truly innovative solution, your partner must seek input and feedback from other innovators and thought leaders. You want a technology partner who is committed to transformative solutions through collaboration. Otherwise, a solution can easily miss the mark. Innovative partners that gather meaningful input from customers create long-term value. By working with innovators and thought leaders within their customer base, technology partners can create forward-thinking solutions that drive sustainable value. Collaboration also leads to product development that aligns future functionality with your organization's long-term challenges. This type of partnership pays for itself. Having a collaborative, innovative partner on your side is like having your own research and development team. 


    Focus. You want an innovative partner that does one thing well. That’s the way of the technology world today. Truly innovative solutions are focused on making one thing incredibly easy for the end user. They start small with a singular focus and create a truly exceptional solution and then build from there. Here’s a personal example: eCivis was started with input from a focus group at ICMA about 15 years ago. That focus group advised us to start by making the grants research process easier for local governments. We listened and started eCivis by creating the best grants research product on the market. Since then, we’ve added a couple of other areas of focus. Focus has allowed us to build smartly, which has translated into ongoing innovation and sustainable value for customers.


    The other benefit of working with a focused partner is that they work with other focused innovators to create an incredible suite of services. This is one of the reasons that innovative state and local governments are moving away from custom IT solutions and expensive ERP systems to converged infrastructures made up of many focused services that deliver more efficient, optimized results. Oftentimes, by the time government entities implement traditional systems, they are already obsolete and the return on investment can take up to 10 years. ERP systems also fail to provide dedicated support and collaboration after implementation.


    With fewer resources, a transitioning workforce, and budget constraints, innovative technology means more than just making things easier for local government. It means that sustainability must become a part of the development formula. So what does that look like? How do you make things easier for public sector organizations who have people wearing multiple hats and working with limited budgets? By finding innovative partners who build technology solutions that address these challenges. 

  • Mon, April 27, 2015 4:55 PM | Deanna Tharpe (Administrator)

    By Sterling Lynk

    Like in years past, I was fortunate to be a presenter once again at last month's annual Down Syndrome Affiliates in Action Leadership Conference.  


    Since I returned I have been honored by the number of people who shared their thoughts with me on one session I offered called "You're Not Leading, You're Stealing: It's Time to Lead".  This idea comes from that session.


    The Idea: Well functioning teams get more done by far than a group of individuals.  If you are a leader and what you are trying to do would be appropriate for a team (and almost all work is), then not forming a strong team is a leadership sin.


    Professor Michael A. Roberto of Bryant University offers the first seven characteristics of quality teams.  Art Lersch of the University of Wisconsin Extension offers the eighth:

    Stability.

    A compelling shared vision, goal or purpose.

    An enabling structure within a beneficial environment.

    Well guided and mentored.

    Members aware of its current stage of team development.

    Has the ability to tolerate conflict without fracturing.

    Mines for constructive conflict and avoids group-think.

    Seeks out, honors, respects and leverages the differences between team members.


    What This Ideas Means for You:  The closer the teams you lead and the teams you are a part of have the above characteristics the more effective, the more efficient and the more capable of acting on your mighty purpose you will be.  


    What were the characteristics of the best teams you were part of?  Please use the comment function below to share with the community.


    You can also request access to the most current version of the workbook for this presentation here.


    The Bigger Idea: So many leaders feel alone in the work they do and this is a great burden to them.  I speak to leaders every week who are experiencing this burden and I have been one of them.  This is unnecessary and tragic, because these leaders could build real teams around them if they just knew how.


    This stuff is powerful - Alexander the Great literally conquered the entire world known to the ancient Macedonians with his friends (his captains were called "friends" and most of them actually were).  Imagine what good you could do with a team you are close with (has the above 8 characteristics).


    You may not get to work with your best friends but you don't have to work alone.


    Note: Sterling Lynk is DSAIA's Board President. This blog post is from his Mighty Purpose site: http://www.mightypurpose.me/ 

  • Fri, March 27, 2015 4:58 PM | Deanna Tharpe (Administrator)

    By Jane Page-Steiner

    Most nonprofit leaders at some point are faced with the challenge of board members that are complacent and not living up to their potential. The symptoms of complacency may include board members not showing up for meetings, members who are not completing their assignments and/or not participating in boardroom discussions.


    It can difficult for the leadership to call people out on these types of behaviors and well-meaning leaders will often ignore inappropriate behaviors in an effort not to embarrass anyone. However, even a few complacent board members can frustrate and demoralize your active board members and create resentment among members.


    Contact Jane Page-Steiner jane@jpsnonprofit.com to set up a no cost, no obligation consultation for planning your board retreat, strategic planning and/or board development activities.


    Below are tips for engaging your complacent board members:

    • Set up a coffee date to check in with them to see if they are experiencing a personal or work related issue that may be interfering with their board work. If they need a break for personal reasons, suggest they consider taking a sabbatical from the board.

    • Check in with them after the meetings to make sure they feel comfortable participating in the boardrrom discussions. Some members may not be as comfortable speaking up at the board table – encourage them and remind them how much you value their input.

    • Build on the members’ skills and interests – ask them to support or lead specific projects that match their skills and interests.

    • Create time for board members to socialize together before or after board meetings or at outside events – this builds relationships. As they get to know one another better, often people become more motivated to actively participate in the work of the board if it feels more like a group of friends.

    • If someone is saying they are too busy or feeling burned out – encourage them to resign and take a break. Suggest that when they are ready to come back, you will explore with them the many ways they can support your organization.


    Read more of Jane's blog here:  http://www.jpsnonprofit.com/2015/03/24/what-to-do-about-complacent-board-members/ 

  • Fri, January 30, 2015 5:01 PM | Deanna Tharpe (Administrator)

    By Robbin Lyons, Wisconsin Upside Down Board President

    Wisconsin Upside Down was the recipient of several DSAIA Affiliates in Excellence Awards in 2014.  Two of our awards were actually the benefit of a strong community partnership.  During our efforts to get the ABLE Act passed in 2013, we partnered with Hartland/Lakeside School District.  We went into the classrooms of two grade levels and talked to the classes about how a bill gets passed into law.  We invited the children to participate and the school let us send information home to parents, many of whom also got involved.  Children, teachers and parents wrote letters to Congress.  The children and staff helped us to make a video that we shared with our congressmen and which won one of our DSAIA awards.  The whole school has followed us along our path as we worked to get ABLE passed.  Local media followed the class projects too, making it a great win-win for us and the schools.  


    During all of this learning together and visits to the schools, we brought the kids Down syndrome awareness bracelets.  One of the teachers took a great photo of the kids wearing these bracelets.  We have used this photo on our website and Facebook pages and we turned it in for an award, which it also won.  


    After the conference, we called the school to let them know about the honors and we made arrangements to have another follow-up visit.  When we once again visited the school, we shared a video we made during our visit to Congress and we made a special presentation to the teacher who took the beautiful photo.  We thanked all the children for participating and told them that they shared in the awards.  We let them all see the award for the video and brought them a special snack treat that day.  The teacher who took the photo now has the AIA plaque in her classroom.  We presented the school with our own advocacy plaque for their part in our efforts.  It was a great way to show the school and the kids that their hard work was appreciated.  Thanks DSAIA for helping us further our community ties!    


    Watch the video here:  https://www.youtube.com/watch?v=Xm16LRzh4Ys


    And enter here!  http://www.dsaia.org/aieapp/2015.html

    Deadline is 12 noon Central on Monday, February 2nd!

  • Thu, November 06, 2014 5:06 PM | Deanna Tharpe (Administrator)

    By Carolyn Sechler, CPA

     

    Financial records. 

    Always maintain current and proper accounting records.  This will help you effectively manage your organization and plan.  There are plenty of good tools available on line to make your recordkeeping easier!

     

    Donors. 

    Acknowledge gifts properly and when received wherever possible, whether they be cash or other items. All gifts must now be acknowledged for your donors to receive a deduction. This is also an excellent opportunity to share with them the impact of their gift and hopefully help them see the value in continuing to support.  Don’t wait until the end of January to get this done.

     

    Payroll. 

    Confirm that your quarterly tax deposits have been made and employee details are verified (addresses, SS#s, etc.).  Doing so will assure accurate issuance of  W2s.  You might also consider having employees complete new W4s for the year ahead.  Also make sure people are properly classified  (independent contractor vs employee)

     

    1099s.

    Review your files to confirm you have obtained W9s from all you independent contractors.  This will also assure timely issuance of 1099s.

     

    Annual meeting. 

    Bylaws typically require at least one annual meeting of the board.  Your state corporate laws likely require this, as well.  Be sure to document these proceedings in minutes.  

     

    Activities.

    Review your activities/programs and take care to confirm your tax exempt purpose is supported by these events.  Unrelated events can result in potentially squandering precious resources like volunteers, distract leadership from mission and worst case, threaten your exempt status.

    Review your programs, expenses and income for purpose and mission alignment.

     

    Arizona Corporation Commission

    Make sure you complete your renewal annually

     

    990s 99s etc..

    Be sure you have good counsel to assist you in filing your annual tax returns.  If you fail to file, or file late for 3 years in a row your exempt status will be revoked.

     

    Merchant accounts

    Communicate with your provider of merchant services and learn about PCI Compliance.  This is a series of questions you must complete each year with a fee of $59 to assure your use of this tool is protected.


    Join us for an in-depth year end checklist with Carolyn Sechler on Nov 11th at 1 pm ET.  Visit our Upcoming Trainings page for more details!


  • Tue, October 28, 2014 5:07 PM | Deanna Tharpe (Administrator)

    Your organization has done some wonderful things this past year. We know….we stalk you on Facebook. Just kidding…we “follow” your accomplishments on Facebook. Ok, maybe we do stalk you a LITTLE.  But you’re so awesome! Can you blame us?

    So now that we’ve ascertained your “awesome-ness”, can we talk about recognizing you nationally for your efforts? You know, that is what DSAIA’s Affiliates in Excellence does. Yep, it’s for members only…and we look at the great things you’ve done in the past year and award organizations for their incredible achievements. Entering is easy. But you might want to look at the list of categories first, of course.  Oh, and the rules.  The rules are important.  

    So, you have a great program that is doing wonderful things? Or perhaps your new website is the best thing since sliced bread?  Or maybe people are coming in droves to purchase your walk tee because it’s so incredibly cool? Wait, did your billboard increase awareness in your area?  Or maybe you’re just all-around awesome and would like to nominate your organization for Affiliate of the Year!

    The great thing about the DSAIA Affiliates in Excellence Awards is that you’re competing against groups in YOUR budget category. The submission fee is small and the recognition is large. And we can’t wait to see what you’ve done this year!

    Submissions are due by January 31, 2015.  Awards will be presented at the 2015 DSAIA Leadership Conference in Las Vegas. Find out more here:  http://www.dsaia.org/aieapp/2015.html


  • Mon, September 22, 2014 5:12 PM | Deanna Tharpe (Administrator)
    By Deanna Tharpe, DSAIA Executive Director


    So, when we send our 13 year old son with Down syndrome off to school each morning, we ask him if he is going to "do his job".  His job is to sit at his desk, listen and work hard on the work given to him by his teachers.  So, as we asked him this morning if he was ready to go to school and "do his job", I was thinking about our upcoming Strategic Planning Work Group Orientation coming up tonight.  I wondered....is everyone's strategic plan doing it's job? I mean, we spend lots of time working on it, building it up and nurturing it through the process (just like we do our son).  Is it doing it's job...or is it sitting on the shelf or in a document file goofing off and not being a productive part of your organization?


    And sometimes, we realize that WE have not done our job in preparing him for a certain class or situation. Have we set him up to fail? What about your strategic plan? Have you not spent enough time doing the hard work needed to make it successful? You know, a strategic plan is not created in a day...or even two days. It takes months of hard work and commitment. Hmmm...I'm betting some of you right now are wondering about your 4-hour retreat where you slapped some goals up on a white board, huh? You owe it to your organization and the members it serves to do due diligence on the vision of your organization. 


    The Strategic Planning Work Group is a peer group working on REAL strategic plans in REAL time. Yes, that means that this will go on for months.  But it also means that we'll walk you through each aspect of the process, answering questions, reviewing work and giving you the support you need to make a strategic plan that will "do it's job" for your organization. Not sure if it is right for you? Why not join us for the orientation session which is open to all DSAIA members interested in learning more about the work group. There is no commitment needed to attend the first session.  And, if you decide to join the group, there is no charge for you.  It is a benefit of membership. Now, I've got to get back to "doing my job"!  See you tonight, September 22nd at 7 pm Central.  To register, click <a href="https://dsaiaorg.presencehost.net/trainings/event/2014/09/22/strategic-planning-work-group">here</a>.


    Can't make it tonight?  Register today and we'll send you the video recording to watch and make sure you are up-to-date if you wish to continue the process with us!

  • Tue, August 26, 2014 5:14 PM | Deanna Tharpe (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    First off, if you never put in term limits then you never have a good incentive to go out recruiting. And second, sometimes you need to think OUT of the BOX a little when considering board recruitment. I could talk about doing a skills assessment and how it’s the whole board’s job to recruit but I think today I’ll stick with another little idea. Auxiliary Boards.


    Now, auxiliary boards are not advisory boards.  Advisory boards are filled with professionals who advise the management of the organization. Unlike the board of directors, the advisory board does not have the authority to vote on organization business nor do they shoulder fiduciary responsibility. Advisory boards are there to share their knowledge with the leadership of the organization.


    An Auxiliary Board is a group of volunteers (usually young adults) who volunteer their efforts to the planning, promotion and execution of fundraising and other events. Many sit on committees as well and use their skill sets to the benefit of the organization.  They are NOT board members per se, but you might as well consider that you are grooming them for the job. 


    How do I get one of those, you say? Well, you’re in luck! We just happen to have a great presenter (Yvette Hartfield) explaining the details tomorrow afternoon in a webinar! Yvette will talk about recruitment of the next generation of leadership as well as how to engage and cultivate them into donors and leaders. 


    Seriously, someone from your group should join in tomorrow at 1 pm Eastern. Need to register? Go to https://dsaiaorg.presencehost.net/trainings/upcoming.html and register today!


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

About DSAIA

Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. Learn More

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1335 34th St NE
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