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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! 

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  • Tue, August 11, 2015 12:05 PM | Deanna Tharpe (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    I can tell you all day long how nonprofits should do this and that...and they should deliver good programs and evaluate them...and they should be continuously improving. But I'm not telling you why I feel so strongly about it. And maybe I should.

    Not too long ago, I met someone at a conference and in the midst of our discussion I mentioned my son with Down syndrome. They were surprised.  "You mean, you have a child with Down syndrome?", they asked. Yes, I do. I realize I don't mention him so much. Well, he is not the focus of what I do or why I do it - or is he? I got into this community years ago when my son was born. I didn't realize how much I missed by not getting involved well before that.  I had a cousin with Down syndrome. He was my mother's first cousin...she remembers playing with him and was the first person to say "it's okay" when my diagnosis was delivered. Of course, she really didn't realize all the drama involved with keeping him for a week when he's 14 and a teenager and cranky and bored.  But she made her bed... (I digress)

    I started an organization. It went well. They are still successful. I am proud. But at the end of the day, the picture you see with this post pushes me to help organizations be better. I want every organization to support every individual with DS.  No, not just the cute babies, not just the sweet little toddlers, not even just the incredibly funny elementary age kiddos. I want every DS organization in this country to help make it a better world for MEN and WOMEN with Down syndrome. I want my Joel (14 and loves Chucky movies) to be supported by the local org and not the government. I want my friend Craig Blackburn to marry his sweetheart Heather Hancock and they live together successfully supported by employment and their parents (as all of us were when we first got married). 

    I want all of this. And so that is why I work late on Wednesday nights on Topical Calls and spend extra time on Leaders' Circles and will take a call way after 5 pm Central because I know it's important.  And it's why my board does the same thing. And so, if you didn't know, I have this guy in my life that makes me happy, upset, mad, frustrated, excited, confused and incredibly grateful. He is my guy. And he is why I want all DS groups to strive for more - for nonprofit excellence.  Hey, let's start with DSAIA accreditation.

  • Tue, July 28, 2015 9:27 AM | Deanna Tharpe (Administrator)

    By An Anonymous Executive Director

    Dear Board: I used to receive a $3,500 bonus every year but because the last board president didn’t share any records with you, I no longer receive it. I quit.

    Dear Board: Today I was screamed at for 45 minutes by one of our dads. Why? Because you decided over my objections that the therapy assistance program budget of $1,000 should be cut last month. In the same board meeting you decided to donate $5,000 to another nonprofit entity. I tried to offer every bit of support and creative alternatives to this dad to no avail; he walked away from our organization feeling betrayed and heartbroken (and he doesn’t know about the arbitrary donation). I feel betrayed and heartbroken, too. I quit.

    Dear Board: It’s 3 days away from the Buddy Walktm  and the Board President called me to demand that the 2,000 walk t-shirts be changed…from yellow to green. I quit.

    Dear Board: One of you came by our headquarters today, spoke with one of my employees without my knowledge, quizzing them about their fellow employees’ competence and then threatened to fire one of those employees. I quit.

    Dear Board: For six months, I and a dozen volunteers have designed a new education model for families to work one on one with them to improve their children’s IEPs and educational outcomes. This was one of the top three priorities in last year’s strategic planning approved by you. In addition to designing the model, my team and I have secured more than $20,000 in grants to fund the new project and we are ready to launch next week. Our volunteers have put in 375 hours and I have put in 383 hours personally. You should note that more than 200 of my hours on this project have been on evenings and weekends—beyond the standard 40-hour work week. Well, last night you heard a workshop speaker we hosted mention a different model and so you think we should change to the other model. I quit.

    Many of us have read or heard a lot about the roles and responsibilities of boards, but as an experienced nonprofit professional, I am here to tell you that your most important job is to ensure your CEO is happy and satisfied with their job.  

    How to do this? 1) Trust them to lead, stop micromanaging 2) Respect your staff’s recommendations 3) Don’t change direction weeks or days before a major event or program 4) Stick with your own strategic plan even in the face of distractions 5) Reward excellence…with a thank you note, a bonus at the holidays, a bottle of wine or a simple acknowledgment at the board meetings and finally 6) if you don’t want to hear those ”I quit”  words, talk to your CEO and ask what you can do as a board to help them feel more satisfied or appreciated in their job. Just like you assess and evaluate your CEO’s performance, do you ever ask them to give YOU feedback on ways to improve in your interactions with staff?

    Most executive directors of local Down syndrome support groups LOVE their jobs, but just like in any other job, there are long days, long nights, even longer weekends, unhappy and underserved families, tough decisions that result in not always being liked and of course not a lot of pay. YOU are the key to making us feel appreciated and respected for a job we do well with limited resources. YOU, dear Board, can do this for your CEO, and more importantly, for the good of your entire organization… and I promise it will go far in retaining us.

    (Special thanks to our guest blogger who will remain anonymous.)

  • Mon, July 20, 2015 4:51 PM | Deanna Tharpe (Administrator)

    The U.S. Department of Labor has proposed new regulations designed to expand overtime protections for millions of workers employed by nonprofits, for-profits, and governments. The draft regulations, which will not go into effect (if at all) until after a period of public comment and analysis, would more than double the minimum salary level that white-collar employees must be paid (from $23,660 to $50,400) to exempt them from overtime pay of time and half of wages for hours worked in excess of 40 in any week. The Labor Department is also proposing raising the minimum salary level for “highly compensated employees” from $100,000 to over $120,000 per year, and seeking comments on whether the government should establish a mechanism for automatically raising these salary levels in the future.

    The National Council of Nonprofits encourages all nonprofits to conduct a mission-based analysis of these proposed regulations. That means answering questions about how the proposed increase in the minimum salary levels would affect operations, resources, and staffing, as well as what impact the draft regulations would have on persons relying on the services and the mission of the nonprofit. Nonprofits should share their answers to those questions with the Department of Labor in the form of comments to the proposed regulations. Comments are due by September 4, 2015.

    What's Being Proposed?

    The Department has issued proposed overtime regulations that would do three things, if implemented after a public comment period and further analysis. The Department proposes:

    -Raising the standard minimum level for salaried workers from $455 per week ($23,660 per year) to what amounts to the 40th percentile of weekly earnings for full-time salaried workers. This amount for 2016 is estimated to be $970 per week, or $50,440 annually.

    -Raising the standard salary minimum for highly compensated employees from $100,000 a year to the annualized value of the 90th percentile of weekly earnings of full-time salaried workers, or about $122,148 annually.

    -Implementing a mechanism for automatically updating these two minimum salary levels to adjust for inflation and preclude the need to regularly change the levels via future regulatory actions.

    To read the regulations, go to:!docketDetail;D=WHD-2015-0001 

    DS support organizations should share their answers to those questions with the Department of Labor in the form of comments to the proposed regulations. Comments are due by September 4, 2015.  Comment here:!docketDetail;D=WHD-2015-0001

    To read more about the questions to pose to your organization's leadership and the background on the Fair Labor Standards Act (FSLA), read a very detailed article by the National Council of Nonprofits here: 

  • 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:

  • 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:


    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: 

  • 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 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: 

  • 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:

    And enter here!

    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!



    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.



    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)



    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.  



    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!

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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


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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