Our Newsletter

  • Thu, June 02, 2016 3:28 PM | Anonymous member (Administrator)

    In 2015, Down Syndrome of Louisville was looking for a challenge and they found it.  After 12 months of planning, reviewing, organizing and developing the 130 outcomes spanning the DSAIA’s Accreditation Checklist, Down Syndrome of Louisville completed and received is Gold Accreditation.

    Lisa Holmes, Director of Programming and Operations at Down Syndrome of Louisville, explained that the organization created its strategic plan in 2015 to challenge itself. “We wanted to achieve DSAIA Accreditation and our other goal was to create world-class programming,” she said. “The Gold Accreditation was a stepping stone to achieve that goal.”

    The biggest challenge, Holmes joked, was getting over the shock of the six-page accreditation check list. “It was a little intimidating,” she said. It was worth it, though. Said Holmes: “It’s been one of the best and most defining things I’ve done in my adult professional career.”

    For the more than 35-year-old organization that serves upwards of 500 members in northern Kentucky, the process to meet DSAIA’s rigorous accreditation standards was extremely intentional.

    Holmes explained that the process wasn’t done just to meet the accreditation goals. “We really looked at all our documentation and asked ourselves is this what we actually do and is it meaningful,” said Holmes. “We wanted to make sure everything was accurate. That took a lot of time.”

    Holmes made sure to spend time each week dedicated to the accreditation project to keep it moving. Though, in reflection, she admits she should have created a committee to share the work. Her advice to other DSAs embarking on accreditation: “Create a committee to work on it to help get the work done quickly. Farm out different aspects of the checklist to different specialists – for example, the finance committee could complete the financial pieces.”

    Now that Down Syndrome of Louisville has reached the Gold Accreditation mark, Holmes expects the achievement will give the organization a leg up in fundraising. “I think folks will feel better about writing a check to us for a donation. And the rigor of the whole process will give us an advantage in grant writing.” Furthermore, the accreditation will garner media exposure that will help increase our outreach to members and awareness of Down syndrome in the community.

    If you are a fan of horse racing or basketball, you know that by nature Kentuckians are competitive. And Down Syndrome of Louisville is no exception. “When I got the information about accreditation, of course I said, ‘We’re going for the gold,’” said Holmes. She encourages any affiliate to work on accreditation in order to highlight their achievements and what they are doing for their community. “Whether it’s a storefront or a basement card table, there is great programming going on throughout the country,” Holmes said. “And if you’re doing the very best you can, you are successful.” DSAIA Accreditation proves that you are doing your best.

    For more information about Down Syndrome of Louisville’s road to accreditation, you can contact Lisa Holmes at 502-495-5088 or More information about DSAIA’s Accreditation Program, including the Accreditation checklist, can be found online at

  • Wed, June 01, 2016 1:25 PM | Anonymous member (Administrator)
    The Up Side of Downs of Northeast Ohio, a DSA in Cleveland, opened a new location in May, complete with spaces for meetings and classes, and a storefront selling products by local artisans with Down syndrome. How did they do it? Are you ready to move to a bigger space? Here are the five steps to growing into space that will help your affiliate meet all the needs of the local Down syndrome community.

    1. Launch new programs that will fill the space.

    Years prior to opening the new center, The Up Side of Downs launched several new programs for its community. Before long, “we didn’t have the space [at our current location to hold the programs] and it was difficult to find space around town,” said The Up Side of Downs Executive Director Toni Mullee. And in 2014, the growing affiliate piloted The Learning Program. Added Mullee: “It was so successful, and we knew we needed a dedicated space to do that effectively.”

    2. Get full support from your board.

    Mullee emphasizes the need for an engaged board that not only fully backs the project but also supports the staff. “We have a really great board,” said Mullee. “You cannot succeed if you don’t have a board there to say ‘yes.’” The entire process took about a year from board approval to opening.

    3. Engage your membership.

    “We’ve determined that there is a lot of potential support in the community,” said Mullee. Whenever needs or challenges arose, the staff at The Up Side of Downs would ask their membership for help. “Tap your membership,” advises Mullee. “More often than not, we got what we needed.”

    4. Involve the community in the build.

    The Up Side of Downs built a team of vendors, consultants and contractors from its most vested stakeholders – its families. “We determined that there [was] a lot of potential support in the community,” said Mullee. Of course there was financial support in the form of grants and donations. But also It takes a lot of resources to find, lease and build out a new center. The organization found many of that support from untapped resources within its membership and around the community, including the real estate agent, the engineer who drew the plans, and the vendor that supplied the retail store fixtures, among others. “It’s amazing the resources you can find that are out right there in your community,” said Mullee.

    5. Fill the center with great programs and value.

    The Up Side of Downs is especially excited that its new center is located in a retail shopping building, which gave it the opportunity to open a retail store, Artful 21. “We are selling items from artisans with Down syndrome - local and from across the country – to spread awareness of the abilities of people with Down syndrome.” Self-advocates eventually will staff the store when it officially opens later this summer.

    In addition to the retail space, The Up Side of Downs’ new center has a dedicated children’s classroom for book clubs, summer enrichment programs, art classes and The Learning Program. A general program area provides room for parent support groups, programs for adults with Down syndrome as well as the organization’s board meetings.

    For more information about The Up Side of Downs’ new location, contact Toni Mullee at or 216-447-8763.

  • Sun, May 01, 2016 10:46 AM | Deanna Tharpe (Administrator)

    Ds-connex is excited to offer 2 additional scholarships to use their peer-to-peer fundraising software Stride for qualified walks in 2016. These scholarships will cover 100% of the fee for use of Stride as well as technical and social media support and design services. Please visit our website to learn more about the ds-connex organization and Stride. The value of this scholarship is $5,000 per organization. 

    To qualify for the 2016 Spring scholarship:

    1. Your organization's operating budget must be $150,000 or less,
    2. Your organization must be a member of DSAIA, and
    3. Your organization has not previously received a scholarship from ds-connex.

    To be considered, you need to complete this application by Thursday, May 12, 2016. The two winners of the scholarship with be jointly determined by DSAIA and ds-connex and will be announced on May 19, 2016.

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    • Sun, May 01, 2016 10:44 AM | Deanna Tharpe (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 10:44 AM | Deanna Tharpe (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 10:48 AM | Deanna Tharpe (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 10:48 AM | Deanna Tharpe (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 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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                  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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