Our Newsletter

  • Sun, May 01, 2016 9:44 AM | Anonymous member (Administrator)

    Recently, the National Down Syndrome Society (NDSS) launched a first of its kind employment campaign - #DSWORKS™  - at the National Press Club in Washington, DC with the help of Members of Congress, business leaders and stakeholders in the disability community.

    NDSS' #DSWORKS™ is designed to educate the general public about how adults with Down syndrome are employable individuals and should be included in all aspects of the work force, to encourage corporations and businesses to invest in hiring people with Down syndrome and to increase the number of opportunities for individuals with Down syndrome to work in meaningful and competitive employment settings. As part of #DSWORKS™, NDSS also launched an employment survey that takes a deeper look into employment in the Down syndrome community nationwide. Involvement from employees 18 and older with Down syndrome is needed to make sure we have the most accurate information possible. Learn more about the initiative here.

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    • Sun, May 01, 2016 9:44 AM | Anonymous member (Administrator)

      DSAIA has partnered with Bristol Strategy Group to bring Down syndrome association leaders a comprehensive development training program at an incredible price. Fundraising the SMART Way is the product of Ellen Bristol and Linda Lysakowski (ACFRE), creators of the Leaky Bucket Assessment and respected authors/consultants. The "shared program" model, created specifically for nonprofits such as those in the DS community, allows five organizations to participate in each group with one private coaching session included. The full program consists of five 90-minute live, virtual workshop sessions scheduled on a weekly basis followed by six 60-minute live, virtual coaching sessions scheduled bi-weekly. Ongoing support is offered after the 6-month program is complete if needed. 

      While Bristol Strategy Group charges up to $25,000 or more for a private training program, this shared program model allows for smaller organizations to take advantage of this training for only $5,000. DSAIA members receive an additional discount of $1,000. (Nonmembers receive a full year membership in DSAIA when they purchase the program.) Groups registering prior to May 15th can take advantage of a special "early bird" discount of $500, bringing the cost down to only $3,500 for DSAIA members - a true deal. 

      Want to learn more about this VIP Offer? Click here - and don't forget to take the Leaky Bucket Assessment for a free consultation with Ellen and Linda!

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      • Fri, April 01, 2016 9:48 AM | Anonymous member (Administrator)

        What do other Down syndrome association executives make? What about program directors? Does it depend on their budget or membership? What about benefits and evaluation? These are just some of the questions we were asked at DSAIA on an ongoing basis - and questions that came up during a Leaders' Circle last year. Rather than speculate, that Leaders' Circles worked with DSAIA to create a comprehensive compensation survey for Down syndrome organizations. 

        The new DSAIA Staff & Salary Report is now available to DSAIA members. It includes data from 80 Down syndrome organizations and is broken down into budget categories for ease of use. DSAIA members can view the report by downloading it in the Event section of our website.

        The document is available to nonmembers - click here for more details.

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        • Fri, April 01, 2016 9:48 AM | Anonymous member (Administrator)

          Down Syndrome Affiliates in Action announces the addition of Courtney Dunevant to its staff as Program Assistant. "We couldn't be more thrilled about adding Courtney to our team," said Deanna Tharpe, Executive Director. Dunevant brings a wealth of experience to the organization in the areas of communication, membership management, and customer service. In her role as Program Assistant, she will assist the many committees working on various programs and services offered by DSAIA as well as work with members directly to coordinate information and resources.

          "I am thrilled to have this opportunity to serve our amazing community of Down syndrome affiliates," said Dunevant. "This position means so much to me not only because I am personally connected to Down syndrome but also because I believe in the power and importance of the DSAIA and ultimately the good works of the organizations we serve." 

          "Courtney's experience with member associations has already made her a key addition to the DSAIA family," Tharpe continued. "We view this addition as a sign of our commitment to providing increasing value to our membership. I'm confident that she will play a key role in providing high-quality customer service for our members." 

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            • Fri, April 01, 2016 9:47 AM | Anonymous member (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 9:51 AM | Anonymous member (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 9:50 AM | Anonymous member (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 6:31 AM | Anonymous member (Administrator)

                • Fri, January 01, 2016 9:53 AM | Anonymous member (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 9:26 AM | Anonymous member (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!



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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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