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  • Thu, September 24, 2015 8:55 AM | Anonymous member (Administrator)

    Competition is fierce. It's not just nonprofits - it's actual Down syndrome-focused nonprofits. Yes, we have competition. And too often, I hear the phrase "We serve that population, we offer that service, we do that." But - do you? If a group of parents want to start another organization, then you have to ask yourself the REAL question: Are you serving the members with Down syndrome and their families in your community in the way that THEY think you should be?  And not just how YOU think they should be?

    Oh, there...there's the rub, right? Yes, we can't please every person all of the time. But we need to try. And sometimes it's the fact that we don't know what they want.  Who's fault is that?  It's ours. Because we have to ask.  And ask again.  And in different ways and in different formats.  And sometimes it's a long conversation where you DRAG it out of them... Hey, it's worth it in the end.  I promise.

    So, before you sit quietly lamenting about how hard you work to give your community what they need...maybe you should make sure what they NEED/WANT.  Because sometimes, what they need is not always what they want and vice versa. 

  • Wed, September 16, 2015 10:48 AM | Anonymous member (Administrator)

    Special Guest Blogger: Karen Bowersox of Downs Designs

    Do you know that are 3 million kids in schools today that have a disability?  There are children with Down syndrome, children, with autism and children with mental or physical disorders.  So many of these children do not have appropriate clothing to meet their needs or empower them with independence. 

    Most of these children are wearing sweatpants every day and clothing that doesn’t fit properly. Parents don’t want to send them to school in clothes that require help from caregivers, especially going to the bathroom.  It’s a constant worry for so many, so they sacrifice style many times for independence.

    Here’s an example of how poorly fitting clothes on a child with a disability impacts their life and their families’ life:

    •       ...They may be picked on or laughed at by other children who don’t understand why they dress in sweatpants or leggings every day.
    •       ...Other parents look at the children and think it’s their parent’s fault because they don’t dress them properly or think they don’t care enough about them to buy them nice clothes.
    •       ...Siblings often try to protect their loved one from bullies and may get into fights or in trouble with teachers while trying to defend their brother or sister.

    The fashion industry doesn’t seem to be paying attention to the needs of those with a disability and seem only focused on standard size clothing.  Recently there have been a few companies trying to bring more awareness to the forefront.  Runway of Dreams is making inroads in the industry for one and also my company, Downs Designs Dreams, has been getting more recognition for our efforts to change the clothing options for those with disabilities.

    Downs Designs Dreams has recently filed for a 501(c)3 and hopes through our new non-profit status, we can begin to bring even more awareness to the clothing struggles and challenges for those people with disabilities.  

    So here’s how we are reaching out to our youth in this country and trying to educate them on the clothing struggles faced by people with Down syndrome.  We have a program called Adopt-A-Jean and it’s an amazing way to educate people, and give people with disabilities a little solution to a major problem they may have.

    We want to extend our help to your group or organization and present an idea that we hope you find as important as we do. 

    Because of the poor clothing options for people with disabilities, they are often judged by how they dress rather than by the person they are. Children in schools can often be cruel and some adults even think their parents don’t care enough about them to dress them properly. 

    What we are trying to do is reach out to the young people today and educate them on why people with disabilities often don’t look like their peers.  At the same time, through our Adopt-A-Jean program, offer a solution. 

    Here's a scenario:  Someone in church has a son with Down syndrome and their son can’t do buttons or zippers and off-the-rack clothes just don’t fit, so they have no choice but to send him to school in sweatpants every day.  After they heard about the Adopt-A-Jean program, they proposed this idea to the church youth group.

    So the youth group decides they want to use this program as this year’s project.  They go to our website and download the Adopt-A-Jean – Start a Project pages.  Here they find the information about this project and what to do.  They can also call our office for help with their project.

    So first they need to set a goal.  They find out the price of our jeans and decide how many jeans they want to donate.  Then they decide who they want to donate them to.  Next they plan how to raise the funding. And lastly, when they complete their project, they give us the name, phone number and email of the recipients and we do the rest!

    What happens when this youth group does just one of these projects?  First they learn about the clothing struggles that people with Downs syndrome or other disabilities face every day.  (This is all explained on our website.)  They become more understanding, become less judgmental and gain acceptance.  Then when they tell others why they are raising money, they are also educating additional people about these daily challenges. This program not only offers a dressing solution but advocates disability awareness by eliminating possible outside negative perceptions.

    Now the best part of the program is there will be a few more children or adults in a pair of our jeans and our jeans have a powerful impact on their lives.  Our jeans give the wearer a new sense of confidence and independence and have a long-reaching effect.

    Our mission is to improve the clothing options for people with disabilities and to get more people involved to help spread the word, especially our youth.  We can’t think of a better way!

    If you have more questions, give our office a call at 877 390-4851 toll-free...we're here to help. 

    Karen Bowersox
    Executive Director
    Downs Designs Dreams

  • Tue, September 08, 2015 9:00 AM | Anonymous member (Administrator)

    By Robbin Lyons

    I don't know about you, but I spend a lot of time ordering stuff for my organization. I order promo items, flyers, brochures and golf balls, T-shirts, bags and office supplies. I love it and hate it.

    When I find a great buy and get a huge discount, I am doing the happy dance. When I get stuck with high shipping costs, I pout.  But since I have done it for so long, I wanted to share some tips. 

    Always shop the clearance tab on websites.  Always sign up for their e-news or discounts - just filter them so they drop into a promotions file.  Always check for the latest promotion and give yourself time.  If they are not offering what you need right now or if there is no deal for shipping- wait a week.  Chances are a new promo will be just the thing.

    When you shop- place items in your cart and then leave (make sure you have an established registration first).  Often you will get a follow-up email letting you know that you need to finish your purchase- and an added deal to encourage you to check out.

    My number one tip- Use that chat button! I almost always get a better deal than listed when I do this. Let the person that you are chatting with know that you are a nonprofit. Ask if they can get you a better discount or better deal on shipping. I rarely come away empty. I have even gotten high rush charges dropped.

    It also pays to stay with the same company if you can. Customer loyalty gives you more clout. Let's face it, we all struggle with the bottom line. We need to look professional and make orders, but we all need to be mindful of how much it costs. Hope these tips help!


    Robbin Lyons is the President of Wisconsin Upside Down and former board member (and conference chair extraordinaire) of Down Syndrome Affiliates in Action.

  • Wed, September 02, 2015 11:38 AM | Anonymous member (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    You have staff...hey, you have an executive director or CEO.  Wonderful!  Are you compensating them competitively? Is another nonprofit eyeing your top level staff (or any of your staff) and saying..."Could we get them for our org?"  Worst nightmare, right? 

    Or maybe you're working toward hiring staff (any staff) and wonder what is the best process for setting compensation. Is it enough to get good talent in the door but not so much that you'll lose the confidence of the community?

    Many nonprofits are appropriately competitive - paying enough that they can hire the talent they need but not so much they risk violating the public trust. Trust me, I'm sure that the DS community is not overcompensating their hard-working employees. Nonprofit salaries rose steadily until the "Great Recession" (insert echo here) in 2008. And they started to rebound in 2010, at least among larger nonprofits. However, the nonprofit community certainly does NOT compete with for-profit positions of the same impact and complexity (and probably never will). That being said, we still need to know what other DSA's are paying their employees, what positions they have, whether they are full-time or part-time and how they weigh in under situations such as budget, number of members served, bonus/incentive pay, etc.

    While DSAIA is working on some assistance with your compensation questions, you can assist US in that endeavor by completing our 2015 Compensation Survey online. Yes, EVEN if you don't have ANY employees, we still need you to complete your portion of the survey (which should take you about 2 minutes) so that we can have a complete data set on which to report.  And we will report! The sooner all of our groups complete the survey, the sooner that data can be collated, evaluated and released to our membership. 

    So take a few moments today and complete the survey for us. (And look for the report and some great resources and training to come your way in the future!)

  • Tue, August 11, 2015 12:05 PM | Anonymous member (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 | Anonymous member (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 | Anonymous member (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 | Anonymous member (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 | Anonymous member (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 | Anonymous member (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. 

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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