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  • Fri, April 01, 2016 10:47 AM | Deanna Tharpe (Administrator)

    DSA of Central Texas accepting Affiliate of the Year Award from MetLife's Cheryl Casper & DSAIA's Mac Macsovits

    Affiliates from across the nation were recognized for their accomplishments during the annual DSAIA Leadership Conference in Charlotte, NC in early March. The Affiliates in Excellence Awards spotlight Down syndrome associations across the nation that have excelled in various categories and are sponsored by MetLife Center for Special Needs Planning. One of the highlights of the ceremony is the "Affiliate of the Year" award presentation(s) which went to Down Syndrome Association of Delaware and Down Syndrome Association of Central Texas.



    DSA of Delaware accepting their Affiliate of the Year Award

    "We're delighted to recognize the accomplishments of the local Down syndrome organizations," said Deanna Tharpe, Executive Director of DSAIA.  "It's gratifying and inspiring to have received so many remarkable entries for this year's competition.  We look forward to acknowledging superior efforts by our membership for years to come."


    Details about the Affiliates in Excellence Awards, DSAIA, and the list of award recipients that were announced on March 6, 2016 are available here



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    • Mon, February 01, 2016 10:51 AM | Deanna Tharpe (Administrator)

      Book: The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis Through Adulthood


      Authors: Jen Jacob and Mardra Sikora 


      Review by Anne Mancini, Executive Director and Trisha Oyos Stibbe, Parent, DS Alliance of the Midlands


      Full disclosure! We know - and love - Mardra and Marcus. 

      Anne: When I schedule a meeting with Mardra I block out some extra time, because I know we are going to find more to talk about than what's on our agenda. Marcus and I are in a book club together. I get to see these two in action when I attend an author reading of Black Day: The Monster Rock Band. They are joyful and fun to be around, but Mardra isn't afraid to tell the hard truths. She is not apologetic about her choices and opinions. She is a well-educated and passionate advocate for Marcus and his peers. So I knew before I opened the book that there would be a lot of Mardra's heart in it. 

      Trisha: Claire was only a few months old when I first met Mardra and Marcus. My husband and I listened to this power duo talk about advocacy and were so inspired. Seeing a young adult with Down syndrome being fully engaged and immersed in the "real world" gave both of us such hope about Claire's future. After speaking to Mardra, my passion for advocacy grew and I know it was due to her setting such a strong example. 

      Anne: The very first thing I appreciated about The Parent's Guide to Down Syndrome is the advice to seek out a local Down syndrome association. As the director of the Down Syndrome Alliance of the Midlands, I have the privilege of watching my families welcome each other to the community and share stories and support. This book will provide that sense of community for any parent not quite ready to dive into a local organization or who unfortunately does not have one geographically accessible.

      Anne: Trisha and I are proud to recommend this book to parents of children with Down syndrome. We think wherever a parent might be on the journey, a connection to information and other parents' stories is extraordinarily helpful and can be found in these pages.

      The book is available at Barnes & Noble (in stores and online) as well as Amazon. For special offers, click here. To read the complete review, click here. 


    • Mon, February 01, 2016 10:50 AM | Deanna Tharpe (Administrator)

      The National Down Syndrome Congress, together with other disability and aging advocacy groups, have issued a toolkit to help advocates push for strong implementation of the new Home and Community Based Services (HCBS) Settings Rules in their states.  The new HCBS Settings Rules require all settings funded by Medicaid HCBS programs to, among other things, provide opportunities for participants to be integrated in and engage in community life, have access to the community, control their personal resources, and seek employment and work in competitive settings.  States have until March 2019 to transition their HCBS programs into full compliance with the new settings requirements.

      "Most adults with Down syndrome need support services to live and work in the community.  The HCBS rules, part of the state/federal Medicaid program, are the manner in which these services are funded.  Parents and self-advocates need to be aware of and advocate for strong enforcement of these new rules to ensure life choices based on the individual's needs and desires," said Susan Goodman, NDSC's  Director of Governmental Affairs.  All states have already submitted to the Center for Medicare and Medicaid Services (CMS) their initial transition plans, and CMS has provided feedback to states about needed improvements and next steps for amending and implementing their plans. "The next several months are a critical time for advocacy because that is when states will be making important decisions about their transition plans," she said.

      This new toolkit provides advocates with detailed information about the HCBS Settings Rule and provides action steps for advocates to impact implementation of the new rules in their states.  



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      • Tue, January 19, 2016 7:31 AM | Deanna Tharpe (Administrator)


      • Fri, January 01, 2016 10:53 AM | Deanna Tharpe (Administrator)

        Global Down Syndrome Foundation (GDSF) has announced their new Self-Advocate Employment Initiative Grants. The grants will empower local Down syndrome organizations to provide jobs for individuals with Down syndrome.

        Applications for the grants are due to Global by 5:00 pm (MST) on Friday, January 29, 2016. The grants will be awarded in amounts up to $2,000 and winners will be announced at the Down Syndrome Affiliates in Action Leadership Conference in Charlotte, NC in March 2016.

        Visit the GDSF website for more information about the   Self-Advocate Employment Initiative Grants, including the application and eligibility requirements. To become a Global Member, visit the Down Syndrome World website.


      • Thu, December 17, 2015 10:26 AM | Deanna Tharpe (Administrator)
        DSAIA Newsletter
             Conference  Connection                                      
        2016 Speaker Puts Some FUN Back Into Fundraising 
         
        Consultant, author, and trainer Susan Black, CFRE brings over 20 years of fundraising and non-profit leadership experience to the 2016 DSAIA Conference. She spent most of her nonprofit career working in the disability community including for Easter Seals and the Epilepsy Foundation.

        Susan gives attendees great training and tools in her session Help! They Want Me To Fundraise! which will be appropriate for both board members and staff. Help! My Board is Killing Me! is Susan's second session aimed at having attendees leave with the tools to have an energized, effective board. Check out the full lineup of sessions on our website.
         


        Check Us Out on the App Store!

          


        The mobile app for the 2016 DSAIA Conference is ready to download and enjoy! Get involved in all the pre-event excitement including cool contests!

         

        You'll find the app (Conbop Mobile App) in both Google Play and the Apple store. Log in to the event using the code "dsaia2016" and start engaging now with other attendees while planning your "learning" schedule!


         


         

        New & Notable

          


         

        Gain Approval to attend DSAIA - download


         

        Win a suite upgrade with our 10 in 10 Contest!


         

           
        Our Sponsors                                  

           Metlife Logo         
        Focal Point Logo     NDSC Logo       Specs4Us Logo

         

        Down Syndrome Affiliates in Action

        5010 Fountainblue Drive

        Bismarck, ND 58503

        701.425.7129                           info@dsaia.org                      www.dsaia.org

         

        Copyright © 2013 Down Syndrome Affiliates in Action

         


         


      • Tue, December 01, 2015 10:22 AM | Deanna Tharpe (Administrator)
        DSAIA Newsletter

        Newsletter                                              December 2015

          

        Resources     

         For Your Ears Only: Board Members Topical Call


        Tue, Dec 1st
        8 pm ET/5 pm PT



        10 Steps To A Successful Fundraising Campaign


        Tue, Dec 8th
        1 pm ET/10 am PT 

          


           Miss a webinar? 
        Find it in the Webinar Archiveon the DSAIA website!  Always available to our members any time!

         

        Tips and Ideas

        20 Effective Nonprofit Mission Statements


        Stop Being a Slave to Social Media Marketing


        How 'Founder Syndrome' Can Take Down a Nonprofit

         

         

        Conference Update 

         

          2016

        Charlotte, NC 

         

         
         
        DSAIA Conference

        March 3 - 6, 2016


         

        Enjoy a Suite Upgrade - when you win our 10 Things in 10 Years Contest!

        Learn more.

        Our sessions are scheduled - great experiences await you!

         

        Register today!

         

         

         

         

        Join Today Button 

         

         Find us on Facebook

         Follow us on Twitter

        Visit our blog

        Join our Mailing List

        Get Ready To Be Energized!

           

        Dana Lightman, motivational speaker, will deliver the Saturday keynote address at the 2016 DSAIA Conference in Charlotte. Dana specializes in the field of optimism and positive psychology with a doctorate in Behavioral Science. 

         

        Get ready to unleash your star potential in this energizing mid-morning session! You'll learn proven steps to break through negative patterns and build up positive practices. Dana will also be presenting a breakout session on Saturday afternoon entitled "There's No Such Thing As Difficult People."  Check out the full lineup of sessions on our website.


        Interested in the conference?  Learn about the scholarship opportunities, suite upgrade contests and more on ourwebsite!


        You're Doing Amazing Things - Be Recognized For Them!



        (L-R) Laurie Kowalski, DSAIA Board, Jeremie Ballinger, Tom Fendya of DSAGSL & Kelly Piacenti of MetLife.
         

        Affiliates in Excellence is in its 3rd year of recognizing the  incredible accomplishments of DSAIA members across the nation. Applications are now open through January 31, 2016. With eleven entry categories and three budget categories, DSAIA has made sure that we are recognizing what our members are doing - no matter where they are located or how large they are. To view last year's winners, click here.


        Is your organization doing amazing things? Stand up and be recognized! Complete this short form to submit your application today! Learn all the details on our Affiliates in Excellence page. Awards will be presented at the annual leadership conference in Charlotte in March 2016, sponsored by MetLife Center for Special Needs Planning.

        For Your Ears Only (Board Members Wanted for Topical Call)

        As a board member, you have a different role (and perspective) as a leader in your organization. DSAIA's latest topical call will focus only on the board member and the issues that they face as the governing body (and sometimes worker bees) of their Down syndrome association.


        When registering for the call, you'll be asked to submit questions to be considered for conversation. These questions will be introduced anonymously but can be commented on in the call by the questioner if they wish.


        The call will be moderated by Sterling Lynk, DSAIA Board President. Registrants of this topical call will be screened for approval. (No staff will be allowed on this call.) 


        Register today!


        Down Syndrome Affiliates in Action

        5010 Fountainblue Drive

        Bismarck, ND 58503

        701.425.7129                           info@dsaia.org                      www.dsaia.org

         

        Copyright © 2015 Down Syndrome Affiliates in Action



      • Thu, November 12, 2015 10:23 AM | Deanna Tharpe (Administrator)
        DSAIA Newsletter
             Conference  Connection                                      
        Energize Your Peak Potential at DSAIA 2016
         
        Dana Lightman, motivational speaker, will deliver the Saturday keynote address at the 2016 DSAIA Conference in Charlotte. Dana specializes in the field of optimism and positive psychology with a doctorate in Behavioral Science. 

        Get ready to unleash your star potential in this energizing mid-morning session! You'll learn proven steps to break through negative patterns and build up positive practices. Dana will also be presenting a breakout session on Saturday afternoon entitled "There's No Such Thing As Difficult People."  Check out the full lineup of sessions on our website.
         

        Come "Hangout" With Us Nov 19th!

          


        Join us on November 19th at 8 pm ET/5 pm PT for a live Hangout On Air! This month, we'll be talking "all things conference" to learn more about the 2016 event and answer YOUR questions. 


         

        Special guests include members of the DSAIA Conference Committee covering such topics as registration, technology, programming and especially the fun "after hours" events.  Watch it live on YouTube.

          

        New & Notable

          


         

        Affiliates in Excellence - Open for submissions!


         

        Gain Approval to attend DSAIA - download


         

        Win a suite upgrade with our 10 in 10 Contest!


         

           
        Our Sponsors                                  

        Metlife Logo       Focal Point Logo NDSC Logo       Specs4Us Logo

         

        Down Syndrome Affiliates in Action

        P.O. Box 2122

        Bismarck, ND 58502

        701.425.7129                           info@dsaia.org                      www.dsaia.org

         

        Copyright © 2013 Down Syndrome Affiliates in Action

         


      • Tue, November 03, 2015 10:20 AM | Deanna Tharpe (Administrator)
          
        Resources    
            
        Tue, Nov 3rd
        8 pm ET/5 pm PT 
         
         
         
        Tue, Nov 17th
        1 pm ET/10 am PT
         
         

        Tue, Dec 1st
        8 pm ET/5 pm PT
          

           Miss a webinar? 
        Find it in the Webinar Archiveon the DSAIA website!  Always available to our members any time!
        Tips and Ideas


         

         

        Conference Update 

         

         DSAIA 2016

        Charlotte, NC 

         

         
        March 3 - 6, 2016

        Early Bird Savings have been extended through December 1, 2015! Don't wait - register today!

         

         

         
        DSA Leader Speaks at TEDx


         
        Deborah Tomai, President of Rio Grande Valley Down Syndrome Association (RGVDSA), recently spoke at TEDx McAllen in McAllen, TX. When the organizers announced the theme for the event (Breaking Borders), the leader/parent suggested that they include a message about disability. After an intense vetting process (including the requirement of submitting a short video), Tomai was excited to be chosen as a presenter. "I focused on three actions:  welcome, respect and include individuals with Down syndrome (and other disabilities) in our community," Tomai said. "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 educators, medical providers, funders, etc."

        Along with meeting incredible speakers during the practice sessions, Tomai relayed that she had two incredible outcomes from her participation: "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," Tomai said. "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," Tomai explained. "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 will post information on the video when it becomes available. Read the entire interview here.
        Let's Do Lunch (and Learn)!

        Did you know that DSAIA has 96 webinars in our archive? Yes - 96! That is a lot of information...and it can be a lot to digest. That's why we are highlighting a few of our favorites during our DSAIA Cafe Series beginning November 11th! Yes, let's plan to watch a few awesome presentations over lunch together. No matter what time zone you are in, the presentations will air at NOON. Yes, YOUR 12 noon, no matter what! So, take a moment to fill both your belly AND your mind with the following delectable menu items:
        • Wildly Successful Events (Nov 11th)
        • Firing Lousy Board Members (Nov 18th)
        • Teen & Adult Programs That Work (Nov 25th)
        • The "LikeAble" Organization (Dec 2nd)
        • Building a Productive Board (Dec 9th)
        • Adding Top Level Staff (Dec 16th)
        Register for these and other upcoming events on the DSAIA website.
        Share Your Walk With Others!
           
          Now that Walk Season is are over for most of us, how about sharing all the wonderful promotional pieces that your organization created with other members of Down Syndrome Affiliates in Action?  

        We are looking for all of you to help us build a valuable, informative, and diverse Resource Library for all of us to use!  The Resource Library is available for all members of DSAIA so that we can share ideas and items without having to create things from scratch.  In an effort to jump start the use and content of the library, we are inviting all of you to post your Walk promotional items today! Each time a DSAIA member submits an item, they will be entered into a drawing for some awesome DSAIA merchandise!

        The deadline for the submission contest is November 30, 2015. Members can submit their items here.


        Down Syndrome Affiliates in Action

        5010 Fountainblue Drive

        Bismarck, ND 58503

        701.425.7129                           info@dsaia.org                      www.dsaia.org

         

        Copyright © 2015 Down Syndrome Affiliates in Action


         


      • Thu, October 15, 2015 10:19 AM | Deanna Tharpe (Administrator)
        Crimson Tide Coach to Headline the 2016 Conference
        Former Alabama Crimson Tide head football coach Gene Stallings will be the keynote speaker at the 2016 DSAIA Annual Leadership Conference in Charlotte, NC. Stallings, who led the 1992 Crimson Tide to a national championship, was inducted into the College Football Hall of Fame in 2010. However, the Down syndrome community might know him better for a book he penned about his son with Down syndrome, Johnny, entitled Another Season

        The conference schedule is now available for viewing and the Early Bird deadline to save an additional $100 off registration is November 1, 2015. To view the schedule, register for the event or to explore sponsorship options, visit the conference website
         
        DSAIA Offers Opportunity for Conference Scholarships
          

        conference_attendees.jpg
        Attending DSAIA is a fantastic opportunity for many Down syndrome organizations..some of which bring numerous attendees. But we realize that some group who have a small budget need the conference the most. And that is why we'd like to help those organizations (members and nonmembers) bring as many people as they can to this incredible event.

        2016 Small-Group Scholarship Applicant Criteria:
        • Applicant must not have received a scholarship for the 2014 or 2015 DSAIA Leadership Conference;
        • Applicant must be a staff or board member from a Down syndrome organization with 5 or fewer employees, (not an industry partner or consultant member);
        • Only one applicant is allowed from each individual organization (more than one application can result in exclusion from consideration); and
        • Applicant's organization must have a 2015 budget of $50,000 or less or show extenuating circumstances.
        Complete your application today here or find more information on our website.
           

         

        Down Syndrome Affiliates in Action

        5010 Fountainblue Drive

        Bismarck, ND 58503

        701.425.7129                           info@dsaia.org                      www.dsaia.org

         

        Copyright © 2015 Down Syndrome Affiliates in Action

         


      I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio

      About DSAIA

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

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      5010 Fountainblue Drive
      Bismarck, ND 58503

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