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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! 

  • Tue, December 22, 2015 3:47 PM | Deanna Tharpe (Administrator)

    I try to stay out of "discussion threads" because they lead to no good.  No good, I tell you! But sometimes I forget my rule and innocently make a comment. Oh boy...then I remember why I don't do that. The one thing that always hits me after being bombarded with implications that I don't set expectations high enough for my son with Down syndrome or I put limitations on him or I'm wrong to feel sad every once in a while when we don't hit a milestone or get to do other things that his peers are doing is this: we are not very accepting as a community. I'm being specific here because honestly, people, it kind of hurt my feelings. I mean, yes, it really did hurt my feelings.


    Which leads me to the real issue here: if we want acceptance of our children and adults with Down syndrome, then we have to start at home. No, not in YOUR home...in OUR home. Yep, the Down syndrome community. Heck, the disability community. Once upon a time (some of you have heard this already), a parent at a disability advocacy conference in Austin commented on the fact that my son had Down syndrome, "Oh, that's the Cadillac of disabilities." Yes, they said that. I have witnesses. I wanted to tell them (ok, I thought of my comeback much later in the hotel room) that sometimes it felt like a Yugo, sometimes like an Edsel and sometimes like a semi. 


    But what I heard from other parents and even nonparents around the country was troubling. They stopped going to the local DSA events because they felt bad because their child was so high-functioning. Or that they stopped going to the local DSA events because their child was so low-functioning and they felt inadequate as parents. And some of them...they stopped going because their child had a different form of Down syndrome and they didn't feel welcome. Wait - I'm not done. Some stopped being involved because the "inclusion" topic always led to the fact that they were happy with the placement of their child in school and everyone harped on them for not fighting hard enough. And, some...some stopped going because their children weren't children anymore and they didn't feel included in all the "young" events that their group constantly focused upon.


    I was one of them...one of the people that liked to speak up and tell people that inclusion was the ONLY way to go. Fight the system. Spend more time on after-schooling. And you know what...I was wrong to do that. I have realized that I did those parents and my community a disservice by preaching acceptance and inclusion from my soapbox but not practicing it when I stepped down. We have got to respect each other, people. We have got to get better about NOT having online conversations where we alienate members of our community. That parent or educator or medical professional that just had their involvement soured by that conversation or flippant remark might have gotten soured to the whole community. Who knows? They might have been poised to bring great change to our community as a whole in the years to come and we just ruined it.


    Less preaching, more listening. Less talking at people and more talking with people. More respect. More acceptance. More inclusion. And not just for our wonderful friends and loved ones with Down syndrome.


  • Thu, December 10, 2015 2:47 PM | Deanna Tharpe (Administrator)

    Ok, that might have been a LITTLE over the top but sometimes it feels like DSAIA is just OUT THERE.....with NO NET. And honestly, I kind of like it. No, you won't find me on every stinking roller coaster ride at the amusement park. Nor will you find me zip-lining. (I was fooled into believing it was a one-time thing and then I found out that there were 10 zip lines and no way to get down....it was not pretty.) But what you will find me doing is taking risks to find more effective ways to deliver programming and services to our membership. 

    Some (ok quite a few) involve technology. So if it works and you love it, that is great. But if it sometimes doesn't, please know that our goal was to make it better for our members. One of those risks is a new "info" avenue we are trying. We're utilizing Google Hangouts on Air and YouTube live streaming to bring you a broadcast each month regarding great information, involving guests and even a topic for discussion. This past month, we had our first broadcast with our guests being the Conference Cast. We talked all things conference including registration, mobile apps, speakers, events and even what's up with uptown Charlotte! 

    The recording is available - here's the link:  https://youtu.be/vI0K7MGnx4c

    And we hope to see you on the next one in December! Don't ask - we still got some scheduling to do, LOL!


  • Tue, November 24, 2015 4:41 PM | Deanna Tharpe (Administrator)

    Guest Blogger: Julia Campbell of Julia Campbell Social Media

    Social media is not a fad, nor is it a trend – it is a way of life.

    Digital and social media tools have completely revolutionized the ways in which people communicate with each other, as well as the ways that we consume and share information.

    Love them or hate them, they are here to stay – and their influence on nonprofit marketing and fundraising is only growing.

    In MDG’s new infographic, they found that nonprofits have seen huge growth in their online presence, and an increase in their use of online fundraising tools such as social media and peer-to-peer campaigns.

    Key findings:

    **3 of the top 4 ways that nonprofits connect with donors and supporters are now digital – nonprofit websites, email campaigns, and social media channels.

    **Online giving, while still a small percentage of overall philanthropy and giving, is the fastest growing way that donors are supporting nonprofits.

    **81% of nonprofits still find Facebook incredibly important to their social strategy.

    **Peer-to-peer online fundraising is popular and a great way to raise money – 33% of all online donations are made through P2P campaigns.

    **Email isn’t dead – far from it! Nonprofits recoup $40 for every $1 spent on email (this means they are doing it right).


    Julia Campbell will be presenting at DSAIA's next webinar on Dec 8th - you can register here. You can read more of her blog here.

     


  • Fri, October 30, 2015 9:22 AM | Deanna Tharpe (Administrator)

    Recently, one of our DSAIA members (Deborah Tomai, Board President of Rio Grande Valley Down Syndrome Association) was featured in a TEDx presentation. While an informative article can be found in our newsletter from Nov 2015, we'd like to share the complete interview that we were unable to due to space constraints in our newsletter.  

    DSAIA: Where/when was your TED Talk?

    Tomai: I spoke at TEDx McAllen in McAllen, TX on Tuesday, October 6, 2015.  TEDx events are independently organized in communities around the world, but they follow a strict blueprint set up by the main TED organization.

    DSAIA: How did you come to get the opportunity to do a TED Talk?

    Tomai: I love to listen to TED talks!  When I saw that there would be a TEDx event happening in my area, I followed their facebook page, thinking that I would try to get tickets.  When the organizers announced the theme for this year's event was "Breaking Borders", I was excited.  I sent the organizers an email to suggest that they include a message about disability.  Eventually, they asked for speaker nominations.  I asked a few people if I could nominate them, and I got a lukewarm response, so I summoned my courage and nominated myself.  I made it through the first cut and was asked to submit a short video.  I only had a few days to prepare, so that was intense.

    DSAIA: What was the main message you tried to convey to your audience?

    Tomai: I focused on three actions: welcome, respect and include individuals with Down syndrome (and other disabilities) in our community.

    DSAIA: Tell us about the experience…standing up on stage there, addressing the crowd, being part of a prestigious group…

    Tomai: I felt like a huge fraud!  My son Ben is only four years old, so I'm new at this.  I read a lot, and I've joined a ton of facebook groups, but I'm very much a learner.  Every idea that I shared comes from what I've heard and discussed with other people - the "Just Like You" video, conference speakers from DSAIA and NDSC, LOTS of blogs, and families in my community.  

    When my son was born, we didn't have a local Down syndrome association, so the RGVDSA was formed out of need - I wanted to know families in real life, and not just online.  I hoped that participating in TEDx would benefit RGVDSA - that we would connect with new families, and that we could build our profile locally with local educators, medical providers, funders, etc.  The talk was scheduled for the beginning of October, so I thought it would be perfect leading into Down syndrome awareness month.

    The practices for TEDx were fascinating.  We got to hear each other's ideas take form and change shape through regular speaker meetings.  The people who spoke are all doers and world-changers - two amazing Latina poets, one fellow who started his own school, a man from the colonias who now has his own fashion label in New York, a young civic activist, a Mariachi singer with a gorgeous voice, an award-winning educator, and more.  It's energizing and inspiring to talk to passionate people!

    I was nervous.  I was the next-to-last speaker, so I had to wait all day long before it was my turn to speak.  But the audience was wonderful.  I got to sit with several audience members during lunch, and each person resonated with a different speaker or illustration.

    My talk went well, I think.  We hadn't rehearsed in the same space, so there were a few things that surprised me with the slides and the clock, but it felt pretty comfortable overall.  I was worried about finishing on time, but I made it with 20 seconds to spare!  The audience responded generously with a standing ovation.  I wish I had taken more time to appreciate the moment, but I mostly felt relieved that it was over.

    DSAIA: Has anything come of the talk?

    Tomai: A neat personal moment: one of the other speakers confided in me that she has friends who have a son with Down syndrome, and she wasn't ever sure how to interact with him.  She made a point of telling me that she had invited their family over for a meal, and she gave the young man a tour and talked about her art with him.  She said that her perspective had changed, and she had made a deliberate effort to reach out to him.

    I also received an invitation to be a keynote speaker at a statewide event for physician's assistants in February.  I'll be speaking to around a thousand medical providers across the state - who care for individuals with Down syndrome at all stages of life.  I'm hoping to provide everyone with resources - including links and contact info for every DSA in Texas.    

    DSAIA: Should we look for it on video soon?

    Tomai: That's what I hear!  They've been editing all the video feeds, and it should be ready within a couple of weeks.  I'll let you know when I know for sure.


  • Thu, September 24, 2015 8:55 AM | Deanna Tharpe (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 | Deanna Tharpe (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.  www.downsdesigns.com 

    Karen Bowersox
    Executive Director
    Downs Designs Dreams


  • Tue, September 08, 2015 9:00 AM | Deanna Tharpe (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 | Deanna Tharpe (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 | 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.)


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

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