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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! 

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  • Tue, May 28, 2019 9:12 AM | Anonymous member (Administrator)

    By Deanna Tharpe, DSAIA Executive Director

    Some people only know me as the executive director of DSAIA. But once upon a time, I founded a Down syndrome association in Paris, Texas. I resigned in 2010, moved to North Dakota and was able to continue my journey in the DS community by becoming part of DSAIA.

    Two years ago, I moved back to Texas. Hanging out after a golf scramble, I had someone come up to me and ask “You probably don’t remember me, but I remember you.” After a little hesitation (I mean, I wasn’t sure where this was going), I asked her name. She related that she had a daughter with Down syndrome and 7 years before, I had come to her house for a new parent visit.  Whew… 

    I instantly remembered her and her daughter because that was the very last new parent visit I did before leaving Texas for North Dakota. She told me that she was struggling back then…very young with a baby, not to mention that the baby had Down syndrome. She said I stayed a long time and she appreciated it.  (Actually, it was my last visit so that was probably me being selfish.)

    She told the person next to me that I held the baby, fed the baby, and so on.  She looked at me and told me that the visit CHANGED HER PERSPECTIVE.  She showed me pictures of her now 7 year old daughter who is doing well and told me that I put Down syndrome on the back burner and helped her understand that this sweet little baby was a baby first.

    Now, about this time, I am tearing up (I am tearing up right now as I write this) and I am pretty sure a few others were around me. I don’t remember everything she said to me that night, but I walked away with the realization that even one interaction (a few hours or a few minutes) can make a world of difference in the life of another person.

    It also reminded me that not every area in the country has an active Down syndrome association to be able to make that difference in someone’s life. To be fair, it’s more than just existing…  Being a professional organization with proven programs and top-notch training is so important and that is why I LOVE what DSAIA does for organizations.

    But as you read this and think back about the many lives your DS organization has touched, think about what would happen if your organization didn’t exist. And I think I’ll leave that right here for you to ponder.


    (If you have a story to share, send it to info@dsaia.org. We want to hear it!)


  • Mon, April 08, 2019 12:39 PM | Anonymous member (Administrator)

    Guest blogger:  Sterling Lynk

    What great things for people with Down syndrome could you do with $9,000?  Launch a new educational program?  Host a new fundraising event?  Serve more families?

    I do executive coaching and strategic consulting for all manner of non-profits around the country, so I took this question to a few of the organizations I have worked with.  One agency I know could keep a family in danger of homelessness off the streets for nearly a year.  Another service provider I’m a fan of could reliably use that money to raise three-times as much.  For one DSA, $9,000 would mean they could serve 15 additional families this year.


    I didn’t pick $9,000 out of thin air; this is not an arbitrary number.  Back on August 28th of 2018, Jamie Dianna Harper, former board president of the Down Syndrome Association of Tulsa, was arrested on double digit counts of embezzlement and “pattern of criminal offense”.  Authorities said she stole over $9,000 of donations intended for the DSA, and this former leader in our movement cost her organization an unmeasured amount of credibility (see https://ktul.com/news/local/down-syndrome-association-moving-past-embezzlement-scandal and http://www.newson6.com/story/38986640/tulsa-woman-facing-19-embezzlement-charges-booked-into-jail).  And, what happened in Tulsa is not an isolated incident in the non-profit world.   A buddy of mine is an Assistant US Attorney and 1/3 of his caseload involves embezzlement of money from non-profits and churches.

    Illegal activity is not the only way for your DSA to lose $9,000.  Have you had a year where the budget didn’t work, a program ended up costing more than expected, a fundraiser underperformed, or you got blindsided with hidden charges in a contract?  I have, despite my best efforts and I bet you have too.

    DSAIA can help.  As member of this trade association you can access our accreditation program customized for the needs of DSAs and their affiliates.  This program can help your team get organized, protect your resources and the people you serve, and line you up with best practices in programming.  Signing up could you save you $9,000.

    Learn more at www.dsaia.org/accreditation.


  • Mon, March 18, 2019 9:52 AM | Anonymous member (Administrator)

    Guest contributor:  Deborah Tomai of Rio Grande Valley Down Syndrome Association

    “Everything’s bigger in Texas” is an unofficial state motto.  Texas has 254 counties and over 28 million residents. One out of every ten U.S. children lives and is educated in Texas.  It’s the second largest state in both area and population (Alaska and California are first, respectively). I live almost on the southern border of Texas, and it would take me over 11 hours to reach Amarillo, which is near the state’s northern border.

    Because Texas is so spread out, our DSA leaders don’t have many opportunities to see each other; oftentimes, we get together at conferences in other states.  Last summer at the NDSC Convention in Dallas, Cameron LaHaise formerly of DSA of Central Texas, Jennifer Ford from the Down Syndrome Guild of Dallas, and Deanna Tharpe from DSAIA (and relocated Texan) pulled together a group of leaders from across the state to have a conversation about connecting.  Cameron had a passion for making sure that each family with a new baby was receiving information required by the newly passed Down Syndrome Information Act; she asked each group to distribute a survey to new families. Deanna was excited because DSAIA had the foresight to buy domains for each state.  Texas would have the site downsyndrometexas.org, modeled on downsyndromeohio.org. The website is not designed as a stand-alone resource, but it points people toward local support.

    Since that meeting, we’ve slowly but surely started growing our connections.  We’ve had the occasional conference call, and there’s an email chain. What really got us moving is the Texas Legislature.  The Texas Legislature is in session only 140 calendar days every other year, so if there are any policy concerns that impact people with Down syndrome, we have to address them now or wait until 2021.  

    The stars aligned in another way: the new speaker pro-tem of the Texas House of Representatives has a sister with Down syndrome.  Rep. Joe Moody has been supportive of the disability community, and his family thought this would be a great year to celebrate World Down Syndrome Day in Austin.  With their encouragement, our organizations decided to meet for a celebration at the Texas Capitol.

    This Thursday, we will have over 50 people from across the Great State of Texas joining us at the State Capitol to receive World Down Syndrome Day proclamations in the Texas House and Senate.  While we’re there, we’ll meet with legislators about current issues in special education, transition, employment, Medicaid waiver wait lists and more. We’re excited to kick off our Down Syndrome Texas collaboration with a visible, impactful day at the Capitol.  

    We’re still figuring out how our state collaboration will work in the long run, but we can already see that it’s making a difference.  In June, DSA leadership will meet in College Station to flesh out the longer term goals of working together - state advocacy, sharing info about events and conferences across the state, and working together to ensure that families in all 254 Texas counties have access to local support.  Thank you DSAIA for hosting the website and giving us the push to get together as a state. 

    We are more powerful together.


  • Tue, February 05, 2019 11:43 AM | Anonymous member (Administrator)

    Guest Contributor:  Emily Iland, Educational Consultant, Writer and Producer, BE SAFE The Movie

    When my son Tom was learning to drive, I was terrified. I wasn’t worried about the rules of the road, I knew he’d memorize those. I was worried that if he was stopped by the police, the first thing that would come of his mouth would be “video-talk” from a favorite Jim Carrey movie, like Liar, Liar or Dumb & Dumber! No matter which movie it was, it wouldn’t be good! Tom has autism, and while he usually manages things very well, he is at-risk in a police encounter for multiple reasons related to his disability, like others with I/DD.

    As a parent and a parent leader, I know that other parents and leaders (like you) have fears about safety. Our children (including adults) may wander, have little sense of danger, or have limited communication skills. We are all disturbed by disastrous incidents between police and individuals with disabilities, even those who are accompanied by a caretaker. None of us will ever forget the tragic death of Ethan Saylor.

    My response to this fear-inducing situation was to DO SOMETHING! My first step was organizing with other parents to train local sheriff’s deputies about developmental disabilities. In 2006, I authored the autism training for the Los Angeles Police Department which has been presented to well over 7,000 officers to date. I thought that training the police about disabilities would be the answer to the problem, but I was wrong. It’s essential, but it’s not enough.

    One day a trained deputy said to me, “Emily, even when I know that someone has a disability, if they run from me I still have to chase them. If they fight with me I have to fight back and win.” This was the scariest thing anyone ever said to me. I was stunned, but it was true. Particular actions can trigger tactical responses from the police, disability or not. My question to him was, “Who is training our population not to run and not to fight?” and the answer was, “Nobody.”

    More fear, more action! I decided to make a movie to show individuals with I/DD and related conditions what to do to in everyday encounters with the police! Joey Travolta of Inclusion Films co-produced BE SAFE the Movie, starring differently-abled individuals interacting with real police officers. We re-framed the Don’ts (Don’t run, Don’t fight) into Do’s: Stay where you are, Follow instructions, and five other life-saving skills.  I created a differentiated curriculum to go along with the Movie to reach learners of all abilities. 

    It’s our responsibility as parents and leaders to ensure that we explicitly teach everyone these skills. Whatever tools you want to use, resolve to DO SOMETHING about safety! The alternative to being proactive is leaving safety to chance, and we know how that’s working.

    I hope you’ll want to learn more about BE SAFE and how you can help the people in your life on a personal and a community level! Please join Tom and me for our 3-hour workshop, BE SAFE: How to Interact Safely with the Police on Friday March 1 from 1:30 p.m. to 4:45 p.m. See you there!


  • Mon, January 14, 2019 8:48 AM | Anonymous member (Administrator)

    Guest blogger - Linda Lysakowski, ACFRE, author of numerous nonprofit & fundraising works, speaker at the upcoming DSAIA 2019 Leadership Conference


    Okay, what other options do we have?

    Nag Them at Every Board Meeting?

    I’ve attended a lot of board meetings and have often seen the board chair, usually with an uncomfortable look, say, “Okay you know we all have to make a financial commitment and so far, we’ve only had 60 percent of the board make pledges.  Does this work? What do you think? What I’ve observed is there are usually a lot of board members shifting around in their seats, a few looks of haughty derision (“I’ve made my pledge, have you?”), a couple of people stammering an explanation or apology, “Oh I thought that was by the end of the year,” or “I lost my pledge card,” or, “Oh yeah, I wanted to send it in but I forgot.”

    Threaten to Fire Them?

    So, what do you do with the board member who does not give? “You’re fired!” Wait a minute. Can we even fire board members? Yes, you can. (See Simone Joyaux’s masterpiece, Firing Lousy Board Members) or watch her webinar on the topic in STACKS. But it is a process that requires much consideration.  A decision to fire a board member wouldn’t happen solely on their inability or refusal to contribute. What other benefits do you gain by having them on the board? Is there a valid reason they are not giving? You need to have a private discussion with these board members and perhaps give them options—monthly giving, or a pledge to be paid later, or a smaller gift than they were asked for. However, don’t let them off too easy either.

    I worked with one board during a capital campaign and one of the board members refused to make a pledge to the campaign. The board chair said, “Okay we know it’s important to have 100 percent board giving to this campaign, so I’ll make a pledge in Gary’s name.” Seems like an easy out, huh? But is it a legal, ethical, wise thing to do? While there is no legal reason this cannot be done that I am aware of, it is certainly not ethical nor is it wise to set this type of precedent. Ethically, you cannot say you have 100 percent board participation if you don’t. And do you really want to set a standard like this? Pretty soon, other board members will say, “Well I don’t want to give, I’ll just let Jack make a gift in my name.”

    Shame Them?

    One organization I know has a poster in the board room, listing each board member by name and the amount of each board member’s annual gift, contributions they’ve made to the organization’s two annual events, and gifts they’ve obtained from others. While this might be looked at as a tactic to shame board members into giving, it can also serve to inspire them and foster a healthy sense of competition. It might work for your organization.

    Inspire them?

    Another organization conducted its annual staff appeal at the same time the annual board appeal was being conducted. When the results of the staff appeal were announced at a board meeting, the board was shocked to find out how much was raised from the staff, which consisted of mostly social workers. The board chair said, “Wow, folks that is amazing, I think we board members better pony up.” Several board members increased their pledges on the spot.

    While these may seem like shame tactics, it served to inspire the board.

    Another way to inspire your board include educating them about fundraising. One thing you can do is hold a “mission moment” at each board meeting where they hear from program staff about the work your organization is doing and how it is changing and/or saving lives. This makes them want to support your efforts and makes them feel part of the mission and vision. You can also have some educational sessions on the importance of fundraising, and especially how important their giving is to set an example for others. You might want to bring in a board member for another nonprofit whose fundraising is extremely successful and have this board member talk to your board about how board giving made a difference in their fundraising success.

    So, what is the best way to ask board members? Funny you should ask! In my upcoming presentation for DSAIA 2019 ("Building a 5 Star Board") I’ll explain the annual board appeal.


  • Mon, January 07, 2019 10:55 AM | Anonymous member (Administrator)


    Guest blogger - Linda Lysakowski, ACFRE, author of numerous nonprofit & fundraising works, speaker at the upcoming DSAIA 2019 Leadership Conference


    I’ve seen the good, the bad, and the ugly when it comes to asking board members for their financial commitment.  So, when and how should the ask be made? Let’s talk about some options.

    At Recruitment?

    I’ve always stressed that you need to raise the issue of board giving during the recruitment process. So, is this the time to ask for the gift? No. It’s too soon. Board members are just hearing about the expectations in many areas such as attending meetings and events, the fiduciary responsibility, and their financial obligations. In fact, they may say no to serving on the board so it’s really too soon to ask for a board gift! Or you may decide they aren’t good board material. Even if there is mutual agreement that board service is the right move for this prospective board member, you don’t want to whip out a pledge card and expect them to sign it on the spot. Let them know, instead, how and when they will be approached for a gift.

    At Orientation?

    So, let’s wait and ask them at orientation. That’s a good plan, right? Wrong! During orientation, board members should be focused on absorbing information from the various briefings they received—programs, the budget, the strategic plan, etc. The chief development officer should also provide a briefing on the development plan and how fundraising works in your organization and should touch on the importance of board giving. But giving is an individual thing and they don’t want to be asked as a group. So, please don’t do it here.

    Should We Send a Letter from Our Board Chair?

    Another mistake.  It’s better than being asked in a group, or is it? Think about how you typically use direct mail—to acquire new donors, to reach out to those who typically give a small gift to your organization, to send news about your organization. None of these are what you’re trying to accomplish with your board giving. They are not new to your organization, they are not being asked for a low-level gift, and they receive the news through board meetings and other interaction with staff. So, why would you approach them through the mail?

     At the First Meeting of the Year?

    Okay, Linda, you always say we should ask them early, so this idea makes sense, doesn’t it? Sorry, wrong answer! The “Here’s your pledge card, fill it out” approach doesn’t work with major donors and it won’t work with the board.

    A colleague called me shortly after accepting a new development position. He sought advice about how to handle his organization’s approach to board giving. He had just come from his first board meeting in his new position, and he said the board chair started the meeting by saying that board members were expected to contribute to the organization, handed out pledge cards, and said, “Fill out your pledge card and hand it to me before you leave the meeting tonight.” Not exactly a well-planned, thoughtful approach to board giving!

     

    See part two of this blog coming up next week!  And don't miss Linda's 3-hour workshop "Building a 5 Star Board" at DSAIA 2019 in St. Louis!

     


     


  • Tue, November 20, 2018 2:00 PM | Anonymous member

    This article was expertly penned by Amy Van Bergen, who, among a slew of distinguished credentials and accolades, will be presenting at the 2019 DSAIA Leadership Conference, Feb. 28-Mar. 3, in St. Louis, on the topic of diversity on boards and in the workplace.

    1. The FRIEND who can keep his or her mouth shut

    This is that guy or gal whom you can reach out to day or night with a facebook message, text or email and they will immediately respond. You need to vent about what’s driving you crazy about your upcoming event? You need someone to talk you off the ledge? Your recent committee brainstorming sesh leave you feeling down or not sure what to try next? Want to just get someone else’s take on another group’s PR campaign? I promise you that you will meet your new best friend at DSAIA this year.

    2. The PROGRAM EXPERT you want to become when you grow up

    Has your board made a teen/adult transition program a top priority this year? Or maybe you are updating your prenatal or medical outreach efforts? Then you will attend at least one workshop on the topic, be armed with a detailed plan and resources to kickstart your new program and you will probably be struck with how you can add some secret sauce into ALL of your programs for some pizazz, consistency and efficiency.

    3. The DONOR who is going to make all the difference to your educational outreach or employment program in 2019

    Where else can you go to meet in person with Down syndrome-specific grantors like Global Down Syndrome Foundation, an organization that has granted about $500,000 to DS support organizations since 2012? DSAIA is the place to go to hear directly from both former recipients as well as the decision-makers.

    4. The NONPROFIT GURU who can help you wade through the gaps in your organization’s infrastructure (whether it’s board issues, budgeting questions, or impact-evaluation concerns)

    I am one of the first people to say that I am not crazy about auditing financials, creating a new development plan, digging into the bylaws or the other necessary pieces of nonprofit know-how…I’d much rather hold a brand-new baby with Down syndrome. But alas, if you want to keep reaching those new parents, we ALL need to better understand our policies and procedures and DSAIA is where you will find plenty of these experts who can help you and your organization.

  • Thu, July 26, 2018 7:30 AM | Anonymous member


    In our mission to help members of the Down syndrome community develop their organizational capacity, we’ve created four tips for fundraising and listed them below. Initiating your own fundraiser can impact how you serve Down syndrome associations in the United States and abroad. At DSAIA, we already represent over 1,000 leaders in the Down syndrome community spanning over 80 organizations--we’re providing tools to best support your community.


        

    1. Choose an Event Format or Theme: By hosting an event for your DSA, you can inspire both awareness and participation for the Down syndrome community. In order to encourage the most action at your event, get creative! Your fundraiser could range anywhere from a golf tournament to fashion show. A list of 100 fundraiser ideas can spark a bit of inspiration for your event.

    2. Establish a Budget: Managing a budget for your event isn’t easy! One of the best ways to tackle a strict budget is to start planning your event early. Giving yourself ample time to research potential costs will allow you to get the best deals from your vendors. In addition, make sure to document everything! Keep a running spreadsheet and ensure that even the smallest costs are counted toward your total budget.

    3. Find a Ticketing or Registration Platform: There are so many online event planning tools these days! Using an online platform is an easy way to create your event, sell tickets, spread the word and even track donations!

    4. Follow Up and Review: After your event, sit down and determine what went well and what can be improved for next time. Noting things that you can fix will make it that much easier to plan your next fundraiser. Sending an email survey to your attendees can be a useful way to generate feedback. Keep it short and sweet, and your attendees will be sure to respond!


    For more information on DSAIA events, head to our events calendar!



  • Fri, April 20, 2018 11:39 AM | Anonymous member

    Last fall, DSAIA talked to a handful of DSAs about their walks. We asked them the standard wrap up questions: what worked? what needs improvement? and compiled their responses. Four lessons stood out among all the answers, so we're sharing these insights with all DSAs in this blog post.

    1. Pitch a Tent: The last thing you want is to play victim to inclimate weather. Baltimore's Down syndrome group made the last minute decision to rent a giant tent for its outdoor walk in 2017 when forecasters called for showers. And it paid off. Chesapeake Down Syndrome raised a large tent in clustered several smaller tents at the walk start/end to cover vendor tables and walk activities. Not only did walkers find shelter from the wind and rain, the "unexpected result was a greater sense of intimacy for attendees, it invited more conversations with our resource organizations, parents could talk while watching their kids play because things were close."

    2. Be Mutually Generous: Your teams have spent a lot of time, energy and, of course, cash to support your walk and your organization's programming - reward them! DSA of Central Ohio upped the ante on team fundraising incentives - "that seems to be a big fundraising motivator." While DSA of Greater St. Louis offered day-of walk activities, including a rock climbing wall, crafts, carnival games, a petting zoo, trackless train, food, and music, to help celebrate their community's hard work. "We also have great success with offering the opportunity to throw out the first pitch and have field slots during a Cardinal game for our highest earning teams."

    3. Timing Is Everything: It may seem like you need to consult focus groups and community surveys to pinpoint the perfect time to launch walk registration, but according to our DSAs "the earlier the better" is the most scientific conclusion they've found. Wisconsin UpsideDown reported that starting earlier coupled with regular incentive offers "got teams fundraising earlier and they raised more this year."

    Timing matters the day of your walk too. Instead of waiting for everyone to line up to start the walk, DSA of Greater Charlotte stuck to the announced start time and opened the course while people were still lining up. "This cut down the time it takes to do the actual Walk route by 50% and avoided backups and bottlenecks along the route. Overall made a huge improvement in how smoothly the actual Walk part went."

    4. Consider the Impact of Change: Newton's third law says for every action, there is an equal and opposite reaction. I'm not a physicist, but as an agent for change you must consider and plan for the effects of making improvements to your event. In Charlotte, people enjoyed a smoother walk experience with an "on time" start. The effect was that walkers spent 50 percent less time on the course, and more time at the end-of-walk party. Now planners know that next year, walkers want an amped up celebration with added fun activities and experiences.

    More Walk Event Resources


  • Tue, April 17, 2018 10:50 AM | Anonymous member

    DSAIA is thrilled and deeply grateful to the House, Senate, and our President for passing the Omnibus budget! The budget includes $3 billion in new money for the NIH, including a big boost to Down syndrome research which has been underfunded for nearly 20 years. Please help us thank NIH and our bipartisan leaders!  

    The provision, supported by the Global Down Syndrome Foundation, directs the NIH Director to lead a groundbreaking new scientific initiative to study immune system dysregulation and trisomy 21, with the aim of yielding research discoveries to improve the health of individuals with Down syndrome and typical individuals at risk for Alzheimer’s disease, cancer, cardiovascular disease, and autism, among others.  

    Last year, the Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, which provides federal funding for the NIH, held the first ever hearing on current and future research funding priorities for people with Down syndrome. The Subcommittee heard testimony from experts including Michelle Sie Whitten, President and CEO of Global Down Syndrome Foundation, Dr. Joaquín M. Espinosa, Executive Director of the Crnic Institute for Down Syndrome, and Frank Stephens, a Global Quincy Jones Award Recipient and Advocate.

    PLEASE HELP US THANK YOUR LEGISLATORS for making people with Down syndrome a priority! Your thank you will ensure that we continue to receive equitable funding today and in future years.

    Help us ensure funding today by writing a simple thank you!  It only takes 2 minutes

    Below are links to find the contact information for your congressional representatives and senators! It helps if you cc: or forward the letter to advocacy@globaldownsyndrome.org

    Representatives: Click here and put in your zip code to find your Representative. 

    Senators: Click here to look up your Senators by their names or your state. Click on the contact link that appears by their name in the search results.

    We are also encouraging all of the local Down syndrome organizations to help us spread the news of the Omnibus passing by sharing the information and attached graphic on their website, social media and newsletters. Thank you for all that your organization does to support families in your community, together we are making a difference!

    Global is thrilled to know that its decade-long campaign to educate our government and invest in science has helped lead to this new development. Global looks forward to being a resource and working with the NIH as this initiative takes shape. This represents an amazing milestone for federal research on Down syndrome and our members and advocates join us in thanking Congress for making this a reality.


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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

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