Our Newsletter

  • 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

    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



    Copyright © 2015 Down Syndrome Affiliates in Action


  • Wed, September 02, 2015 11:51 AM | Deanna Tharpe (Administrator)

    To view this newsletter online:

    Unlike Unicorns, Successful Teen/Adult Programs Do Exist!

    Successful teen and adult programs are not unicorns in the forest - they do exist! And some are extremely successful! Great outcomes come from great ideas and great planning. Down Syndrome Association of Greater Cincinnati hosts an Independent Living Retreat, a weekend-long retreat for adults (18 & up). The retreat focuses on community service, learning new skills, making friendships and gaining independence. (Be sure and watch the video included in this newsletter!)

    Down Syndrome Association of Jacksonville (DSAJ) facilitates a wellness and fitness program for their teens and adults. "Participants have lost anywhere from 3 pounds to over 10 pounds in one session!" says Desiree Jomant of DSAJ. "Individuals who have participated in multiple program sessions have seen weight losses of as much as 65 pounds!" 

    In an upcoming DSAIA webinar, you'll learn about these programs as well as three others...find out more by checking out Teen & Adult Programming That Works!,scheduled for September 17th.


    Adopt-A-Jean Student Project

    An exciting new program from Downs Designs tackles both Down syndrome awareness and a charitable cause at the same time. Downs Designs, well-known within the Down syndrome community for producing clothing (jeans in particular) that are specially made for individuals with Down syndrome, has recently created a charitable program called Adopt-A-Jean. Adopt-A-Jean provides free jeans to an individual who might not otherwise be able to purchase them. However, they've gone one step further to create a project opportunity for students or groups who wish to fundraise for the program.

    The Adopt-A-Jean Project provides the student/group with a packet that includes information on WHY an individual with Down syndrome might require special clothing or why their NBZ (no button, no zipper) jeans might be a valuable tool for someone with another type of disability. The awareness piece was important to Karen Bowersox, owner of Downs Designs and grandmother to a person with Down syndrome. "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," she said. "At the same time, through our Adopt-A-Jean program, we want to offer a solution." Downs Designs also offers NBZ jeans (no button or zipper) in men's and boys' sizes which differ from the original style. Recently, Downs Designs has begun the process of attaining their 501c3 status as a charitable organization in order to continue their awareness work.

    For information on the Adopt-A-Jean project, go to: 


    Huge Savings on Event Shirts

    The latest VIP (Value-Incentive-Purchase) discount offer for DSAIA members is all about low prices for your next event t-shirt order. Partnering with Will Enterprises, a nationally-known and well-respected apparel company, DSAIA members can purchase shirts for as low as $2.59 apiece. Imagine your white shirt with four-color front and one-color back for that amazing price! Need a color shirt with the same options? It's only $3.69 a shirt!

    DSAIA strives to save our members valuable operating funds on items that they already purchase...and that is why we've brokered this incredible deal with a trusted national company. View the offer and the complete pricing chart here:

    Compensation Survey

    Recruiting and retaining the best possible staff to carry out your organization's mission can be more than just a little difficult. And often, the biggest questions boards have is centered around compensation and benefits. In our effort to be a complete resource for Down syndrome organizations, DSAIA has created a staff compensation survey for DSAs in order to provide more complete data for our community.

    Even if you are an organization without staff, please take a moment to complete the initial questions so that we can provide a complete picture in the final report. Your assistance is greatly appreciated in this effort.  And special thanks to one of our Executive Director Leaders' Circles for seeing the need and creating the survey!



    Welcome to our newest member!

    See DSAGC's Independent Living Retreat in action!

    Conference Update

    Early Bird Registration is Open!!

    Save $100 per person before November 1, 2015!


    Upcoming Events


    Teen and Adult Programs That Work!

    Sept 17, 2015

    Grantwriting for Organizational Survival

    Oct 7 & 14, 2015

    Bodies & Boundaries: How To Address Questions About Sexuality from Your Membership

    Nov 17, 2015

    It's time to get DS-Connect'd! Find out how to add one of these incredible ads to your next newsletter! Contact DSAIA for more information!


    18 Email Subject Line Strategies That Will Increase Your Open Rates!

    Preparing for Your Board Meeting

    hy Nonprofits Matter

     Fundraising Delusions Nonprofits Suffer

  • Tue, August 04, 2015 2:10 PM | Deanna Tharpe (Administrator)

    Bloomington DSA Achieves Accreditation

    Down Syndrome Family Connection of Bloomington, Indiana (DSFC) was recently awarded Basic Accreditation status through Down Syndrome Affiliates in Action. Cyndi Johnson, DSFC Board President, said that their organization wanted to pursue accreditation status for many reasons including ensuring that their organization executed nonprofit best practices at every level. "The board was involved all along the way," Johnson explained. "It forced us to review our policies, procedures and programs. The process itself was beneficial to our organization." 

    The group plans to utilize their accreditation award to inspire donor confidence within their community. "We feel like it is a way to set ourselves apart from other nonprofits vying for funding," Johnson said. When asked what advice or suggestions DSFC would offer prospective accreditation applicants, Johnson encouraged groups to have one person coordinating the effort but to be transparent with the board at all times so that everyone learns from the process and can be supportive. One more piece of advice from DSFC: Design a central location for all of your documents (policies, procedures, minutes, bylaws, etc.). It will be helpful in the process but will hold future benefits as well.

    DSFC is the second DSAIA member to receive accreditation status. Down Syndrome Association of Central Florida was awarded accreditation status in 2014. If your organization is interested in applying for accreditation, please visit our website for more information including the Accreditation Checklist.


    2016 Conference Registration Open

    Early Bird savings are now in full swing for the 2016 DSAIA Leadership Conference. Scheduled for March 3-6, 2016 in Charlotte, North Carolina, the 2106 event will mark TEN YEARS of the annual leadership conference. Attendees should plan to celebrate nonstop with incredible educational and networking opportunities. DSAIA has made a commitment to bring in nonprofit experts and exciting new topics each year. The conference committee is already working incredibly hard to do just that - plus present some surprises to the schedule to keep the event evolving.

    Registration is available on the DSAIA conference website. Hotel reservations (at our discounted conference rate) can be made now as well. Don't forget - early registrants take advantage of incredible savings! Save $100 per person when you register before November 1, 2015.  (DSAIA members can save an additional $200 per person when using the Member Discount Code found under the Members Section of our website.)


    To Deborah Tomai and the Rio Grande Valley Down Syndrome Association for being included in a TED TALK!


    Conference Update

    March 3-6, 2016
    Sheraton Charlotte
    Charlotte, NC

    Early Bird Registration is Open!!
    Save $100 per person before November 1, 2015!


    Upcoming Events


    Are You Ready for a Capital Campaign?

    Aug 6 & 20, 2015
    1 pm ET/10 am PT

    Register now!

    Grantwriting for Organizational Survival

    Oct 7 & 14, 2015
    (Registration open soon!)

    Bodies & Boundaries: How To Address Questions About Sexuality from Your Membership

    Nov 17, 2015
    (Registration open soon!)



    How Your Donors View Money

    Best States for Disability Services

    Jacob's Turn

    DS-Connect Now in Spanish!

    5 Fundraisng Delusions Nonprofits Suffer

  • Tue, July 07, 2015 11:15 AM | Deanna Tharpe (Administrator)

    Are You Ready to Move Up to ED?

    Becoming an executive director is a huge transition. To succeed, you must rely on your experiences, strengths, and expertise. In addition, you must learn new skills, engage in new behaviors, work well with other people, know your leadership style and be aware of your strengths and weaknesses. Be honest. Nonprofit executive leadership requires a lot. It is an all-encompassing job.

    Join DSAIA for our upcoming webinar "Moving Up To Executive Director", presented by Joanne Oppelt, MHA, on Wednesday, July 15th, at 1 pm ET. Joanne is the Executive Director of CONTACT We Care.

    Moving Up will help you:

    • Understand the complex nature of nonprofit executive leadership 
    • Identify the skills and characteristics of successful executive directors
    • Gain insight into the unique obligations nonprofit executive directors face
    • Manage multiple priorities
    • Prepare for the transition to your role as executive leader
    • Anticipate challenges inherent in your first year as executive director

      Register today! 

    Good ED Interview Questions (& How To Answer Them)

    A recent study reports that as many as two-thirds of nonprofit leaders will retire in the next 5 years! Joan Garry (nonprofit consultant and instructor) reminds us of this incredible tidbit of information in her latest blog post and has some great interview tips for those coming from the corporate world into positions with nonprofits (or for those already here). Here are the highlights from the article:

    1. Tell us about your previous nonprofit experience. 
    How do you perceive the differences in the sectors?This is really important. You need to have played in the nonprofit sandbox in 
    someway. I’m hoping you have volunteered, been involved in a PTA, or in your house of worship. Consider the differences between that and your corporate job.If you haven’t done any of those things, as a member of the search committee, I am going to be very skeptical indeed.

    2. What is your previous fundraising experience? 
    Unless you have done some real nonprofit fundraising, you might need to be creative. Talk about attributes. “I have what it takes to ask for money because I understand that it’s about building and cultivating relationships and matching individuals with the cause. I am a quick study and my passion for this work trumps any anxiety about asking. And truthfully, I understand that money = programs so my anxiety level here is very low.”

    3. Why are you passionate about THIS organization and THIS mission?  
    You have got to make this case. You can’t just be a fabulous PR executive that wants to do external relations and make a difference. You have to make the case that there’s a specific connection between you and the organization.

    Read all 10 questions/answers on Joan Garry'blog.

    Joan Garry is a nonprofit consultant who works with nonprofit leaders, assisting with crisis management, executive coaching and the building of strong management teams to support the work of the CEO. She also teaches nonprofit media strategy as a professor at the Annenberg School for Communications at the University of Pennsylvania, and is a blogger for The Huffington Post

    Resources for the ED (& Those Hiring One)

    The DSAIA Resource Library and Webinar Archive includes many resources/trainings on hiring and managing top level staff. Below you'll find a list of a few of the many resources.

    Webinars & Conference Presentations:

    • Adding Top Level Staff
    • How To Lose an Executive Director
    • Attract, Build and Retain Terrific Staff
    • Hiring, Supervising a High Performance Management Team
    • We Are Hiring Staff (How Do We Make Sure We're in Compliance?)
    • Hiring First Time Staff:  Opportunities & Challenges

    Resource Library Documents:

    • Accountability & Reporting Chart
    • Board Chair & Executive Director Partnership Chart
    • Employee Handbook/Manual
    • Employee Agreements/Contracts
    • Executive Director Job Descriptions
    • Employee Goal Setting & Evaluations

    Members can access resources at their convenience. Not a member? Learn more about the benefits by scheduling a free orientation with DSAIA staff and board members. 

  • Mon, June 01, 2015 3:49 PM | Deanna Tharpe (Administrator)

    Volunteer Value Hits $23.07 An Hour

    The value of a volunteer hour was up 52 cents to $23.07 in 2014, according to the latest estimate released by Independent Sector (IS). In a recent article by Mark Hrywna in The Nonprofit Times (NPT), the values were reported to range from a low of $19.31 in Arkansas to a high of $39.86 per hour in the District of Columbia. The "average" figure is indexed by IS to determine state values and then increased by 12% to estimate for fringe benefits. The estimated value in your state can be used to value the contributions of volunteers to your organization.

    According to NPT's article, the value of a volunteer hour crossed the $20 mark in 2008 and was only estimated at $16.27 in 2001. About 62.6 million Americans gave 7.7 billion hours of volunteer service worth $173 billion in 2013, according to the Corporation for National and Community Service. You can review IS's information here.

    New VolunteerMatch Book Is Al About Ideas

    VolunteerMatch’s new book on volunteer engagement for nonprofits, Volunteer Engagement 2.0: Ideas and Insights Changing the World, is now available for purchase. Author Robert Rosenthal asked 35 of the smartest volunteer engagement consultants, trainers, and practitioners to share their thoughts on what’s truly important for transforming volunteerism into lasting impact. The result? An awesome collection of “ideas”. 

    Rosenthal (in a recent VolunteerMatch blog post) explains that the publication strikes a balance between actionable strategy and broad discussion of the issues surrounding volunteerism. “Volunteer Engagement 2.0 helps readers craft a strategy that reflects their organization’s mission,” said Rosenthal, and lists some of the ways you’ll be able to get immediate benefit from Volunteer Engagement 2.0: 

    • Track the history of volunteerism, as well as the social, cultural, and technological shifts that will shape its future.
    • Keep current volunteers on board, and engage additional volunteers, donors, and board members.
    • Use new tools and trends such as social media, microvolunteering, virtual volunteering, and hackathons.
    • Recruit corporate partners, adopt skilled volunteers, and identify pro bono resources.
    • Quantify and evaluate your volunteer program’s effectiveness, and adjust your strategies. 

    You can purchase the book here.

    Do you have volunteer materials to share with other DSAIA members? Learn how to submit your items to the DSAIA Resource Library by emailing us today at

  • Fri, May 01, 2015 11:43 AM | Deanna Tharpe (Administrator)

    Publication Highlights Value of

     Employees with DS

    "The value that employees with Down syndrome can add to organizations" a study performed by McKinsey & Company for the project Another Glimpse from Alana Institute, was released in March 2014 and showed that the inclusion of people with Down syndrome generates positive impact in five of nine areas that measure organizational health, such as leadership, customer satisfaction, culture and climate, team motivation, coordination and control. The study also revealed that a healthy company is more likely to present an above-average profit with the inclusion of people with Down syndrome. Marcus Frank, senior consultant at McKinsey, presented the study at the United Nations (UN) in New York, on World Down Syndrome Day. During his speech, Marcus said that McKinsey accepted the challenge of this research because they believe that "companies should promote inclusion at the workplace, not out of obligation but because of the improvements in competitiveness," he said.   

    This year's UN theme is "My Opportunities, My Choices – Enjoying Full and Equal Rights and the Role of Families" and it has total synergy with the McKinsey’s study. "This study is an incentive for parents to continue to invest in the education of their children with Down syndrome because the market is seeing their value. They are recognizing the potential of these young people and, therefore, companies are opening their doors to hire more of them, " says Claudia Moreira, project coordinator of Another Glimpse. The survey interviewed 2,000 employees from several companies and 83% of them said that the presence of a person with Down syndrome causes the leader to become more able to resolve conflicts. The consultancy also spoke with 20 human resource leaders of national and foreign companies, as well as directors of institutions that support people with intellectual disabilities in Brazil, USA, Canada and Europe. The project, Another Glimpse (or Outro Olhar in Portuguese), was born with the mission of raising awareness about the singularities and skills of people with Down syndrome. It believes that a society can only win when it recognizes the potential of diversity that will bring us a better future. It does this through the production and dissemination of knowledge about Down syndrome. Learn more at

    The publication is available for download here Instituto Alana is a member of DSAIA.

    Dealing With Competition Within the DS Community

    DSAIA has scheduled a"Topical Call" on Wednesday, May 6, 2015 from 8 pm -10 pm ET to discuss a very interesting and popular topic of conversation lately in the Down syndrome community: non-DSAs as competition. Local DSAs are seeing other organizations come into their area which may threaten their member and donor bases. These organizations may or may not be Down syndrome-focused, but they do target services to individuals with Down syndrome and possibly duplicate services. 

    Over the years, the local Down syndrome organization has wrestled with other DSAs who might serve overlapping areas (or even the same area). This is nothing new. However, several organizations have expressed that this new situation with centers springing up in their area brings a new set of issues and can impact the local DSA negatively even when a partnership is established. 

    In this call, DSAIA will try to delve into the following questions (among others): Is a non-DSA a threat to existing organizations? Can the non-DSA complement an existing organization?  What factors need to be considered?

    This is a members-only call moderated by DSAIA's Executive Director, Deanna Tharpe. Others can attend the call by invitation-only. If you would like to learn more about the call or register, go to DSAIA's Upcoming Trainings page for details. 

  • Wed, April 01, 2015 4:05 PM | Deanna Tharpe (Administrator)

    How Leaky Is Your Bucket?

    Even some of the finest fund development programs have leaks—pockets of inefficiency that, left unaddressed, will continue to reduce the support the nonprofit organization receives from its fundraising program. "The Leaky Bucket:What’s Wrong with Your Fundraising and How You Can Fix It"is a groundbreaking webinar that will show you how to find the leaks and plug them quickly and effectively. 

    Don't miss this two-part webinar series which airs  Tuesday, April 7th and Tuesday, April 21st at 1 pm ET/10 am PT. Each webinar will be 1 1/2 hours of great information for your organization. Free to members of DSAIA, register today! Not a member, you can register for the low cost of $75. 

    Affiliate of the Year Awards

    Congratulations to our Affiliate of the Year winners for 2014. The Affiliates in Excellence Awards, sponsored by MetLife, are presented at the annual leadership conference and include a number of categories.

    To view the entire list of winners (and their submissions), visit the DSAIA website. Your affiliate can be in the spotlight next year - award categories will remain the same. Consider your submissions now!

    Book Spotlight: An Uncomplicated Life

    In An Uncomplicated Life, the parent learns as much about life from the child as the child does from the parent. Through her unmitigated love for others, her sparkling charisma, and her boundless capacity for joy, Jillian has inspired those around her to live better and more fully. The day Jillian was born, Paul says, was the last bad day. As he lovingly writes, “Jillian is a soul map of our best intentions”—a model of grace, boundless joy, and love for all of us.

    The author, Paul Daugherty, has been a sports columnist for the Cincinnati Enquirer since 1994. He has covered nearly every major American sporting event, as well as five Summer Olympic Games.  He is the author of Fair Game, a collection of his sports columns, and coauthor of books with Chad Johnson and Johnny Bench.  He blogs daily at The Morning Line on  He lives in Loveland, Ohio, with his wife, Kerry. The book was released in March by Harper Collins Publishers and can be purchased in hardcover or e-book form through various outlets.

  • Sun, February 01, 2015 4:08 PM | Deanna Tharpe (Administrator)

    Is The Conference Your Board/Staff Retreat?

    The annual DSAIA Leadership Conference is more than a convention, it's a board retreat and staff development opportunity. The J.W. Marriott Resort & Spa is a beautiful location for the upcoming event   but are you utilizing the event to create a "board/staff retreat" opportunity for your organization? Packed with professional speakersfrom both the Down syndrome and nonprofit community, it's an amazing value to your whole team.

    And while the hotel may pamper you with spa options, DSAIA will surround you with incredible networking options, delicious meals, and some great technology perks.  Keep connected to your organization or home with free WiFi in your room and on the conference floor and utilize our new mobile app to make your experience more engaging. Register today!

    Global Down Syndrome Foundation Grant Survey

    Providing timely and important feedback for our members and from our members is an important aspect of the work of DSAIA. 

    To this end, we hope you will support us by taking five to ten minutes to fill out a survey that will help one of our founding members – the Global Down Syndrome Foundation. The survey is aimed to improve their existing local Down syndrome organization outreach, existing grant program and to ascertain if an additional grant program would be welcomed.

    Access the survey by clicking here. Thanks so much for supporting DSAIA and our members!

    NDSS & DSAIA Announce Stephen Beck, Jr. Scholarship

    Steve Beck Jr., was a part of DSAIA from its birth almost ten years ago, and most recently the former Vice Chairman of the National Down Syndrome Society (NDSS).  His life was dedicated to bettering the lives of individuals with Down syndrome and the organizations that serve them.  We are proud to have worked alongside him and we all benefit from his successes.  He will be dearly missed. 

    In honor of his many accomplishments and to encourage Down syndrome affiliates to pick up the reigns, NDSS and DSAIA are proud to announce the Stephen Beck Jr. "ABLE Act" Affiliate Advocacy Scholarship. The winner of this honor will receive a one-year membership to DSAIA for their organization valued at $995.  Applications will be accepted until February 25, 2015.  Applicants should complete this brief application. The winner will be announced Sunday, March 8th at the DSAIA Affiliates In Excellence Breakfast by the leadership of NDSS at the Annual DSAIA Leadership Conference in Las Vegas, Nevada.

  • Thu, January 01, 2015 4:21 PM | Deanna Tharpe (Administrator)

    World Down Syndrome Day: New Campaign Launched

    In early December over 50 leaders from Down syndrome organizations across the United States (and beyond) attended the webinar launch of a new awareness campaign created for World Down Syndrome Day. The campaign, which was created by a coalition of national and international Down syndrome organizations, is based on the concept of "Random Acts of Kindness" and has met with good response from the community. 

    Work continues on the toolkit, but interested organizations (or individuals) can view the webinar here. The toolkit can be downloaded during the webinar replay or by clicking here. Expect additions to the toolkit in the coming months including a Spanish translation.

    Why Not Make Saving Money for Your

    Organization Your New Year's Resolution?

    Just 8% of Americans achieve their New Year's resolution. That is unacceptable to Down Syndrome Affiliates in Action. You have your strategic plan in place...let's make it EASY to succeed in 2015 by resolving to save money for your Down syndrome organization. 

    Members of DSAIA have been saving money since the launch of the trade association in 2010. Whether it's savings on office supplies, insurance, event software or credit card processing, there is certainly an opportunity to start off the year saving. And in 2015, DSAIA has resolved to research and add even more VIP (Value-Incentive-Purchase) Offers for our members. (Want to get involved? We have VIP Committee openings!)

    And consider passing on savings to your membership as well. Check out two offers aimed at families for legal services and monitoring devices. You'll find all of the 22 available offers here.

    NDSC and DSAIA Team Up for Adult  Sibling Toolkit Webinar

    In February, NDSC and DSAIA are teaming up to help you help adults with Down syndrome and their families. We will be presenting a webinar on customizing the NDSC adult sibling toolkit for families entitled Making the Adult Sibling Toolkit Work for Your Members.

    As you know, people with Down syndrome are living into their 40s, 50s, and even 60s, and for the most part, they continue to live in the family home with their parents. We recognize that for many families, not just those affected by Down syndrome, conversations between parents and adult children on the topics of death, medical incapacitation, healthcare directives and wills are difficult. They are often put off, and in worst cases these conversations NEVER HAPPEN.

    Adult siblings who want to be involved in their brother or sister's life but are not familiar with the details involved can use this toolkit to have discussions with their parents. They can learn how to be an effective advocate, friend, and perhaps 
    caregiver for their sibling after their parents are no longer able. 

    As an affiliate, customizing the Adult Sibling Toolkit with state-specific laws regarding wills, trusts, and guardianship, and local resources for transportation, employment, independent living, etc., will be invaluable to your older members. We will show you which sections most frequently need your affiliate input and strategize methods for getting the toolkit into the hands of families and most importantly, help them to follow through with the task of completing it. 

    Register today! (This is an open webinar for members and nonmembers alike, sponsored by the National Down Syndrome Congress.)   

  • Thu, May 31, 2012 10:51 AM | Deanna Tharpe (Administrator)

    Hiring Staff: A New Trend in the DS Community? 


    Employee of month sign 
    Several DSAIA affiliates have hired staff in the last few years. Some are moving from part-time to full-time positions while others are bringing in an employee for the first time. DSAIA spoke with two groups who have hired within the last few months.
    For the Down Syndrome Association of Greater Charlotte (DSACNC), a long-range planning breakout session at the 2008 DSAIA Conference was the beginning stage of hiring staff. The organization formed a Long-Range Planning Committee after the conference. Terri Leyton, DSACNC Program Director, explained that one of the committee's recommendations was to hire staff. "Ultimately, the Long-Range Planning Committee and the Board of Directors felt that if our organization was to grow and continue to provide quality programs to our members we would have to hire someone to take us to the next level," she said. After hiring two part-time employees in 2010, DSACNC recently hired their first full-time executive director this year.
    For the Down Syndrome Association of Delaware (DSAD), the story might be familiar to a lot of DSAIA members. "The board was getting burned out," said Karen Marsh, DSAD President. "A few of us were doing everything year after year. If we did get volunteer help, the task/program was often not a priority." The decision to hire staff was not a decision DSAD rushed into. The organization has been talking about hiring staff for more than five years. According to Marsh, the reaction to their new hire has been fantastic.  
    Staff titles and job duties are a priority when planning a new hire. DSAD made the decision to hire a part-time program director. "After talking with numerous other affiliates, we decided that made the most sense," said Marsh. "Programming is the heart of what we do. Getting the programming done would free up our board to do other things - grants, other fundraising opportunities, chairing committees and recruiting members to get them involved." DSACNC hired a program director in 2010, but moved to hiring a full-time executive director in 2012 along with a contract employee to run their summer camp. "We contracted the services of a consulting firm that specializes in nonprofits both in 2010 and 2012 to help in the hiring process," said Leyton of DSACNC. "Our hiring committee consisted of board members, people from within the organization and a community partner with Human Resources expertise." DSAD created a hiring committee from board members, let them review applications and do the initial round of interviews. The final interviews were with the president (Marsh), vice-president and fundraising chair. "It helped a lot to see other affiliates' job descriptions," explained Marsh, who utilized the DSAIA Repository as a resource in the planning stages. "We had committee chairs write down areas they needed help. We then created our own description."  
    DSAD hired a recent graduate as their program director with the hope that she will "roll" into an executive director position in the next 2-5 years. While the organization advertised the position to their leadership and members as well, Marsh said that no one from within applied for the position. DSACNC did hire from within their organization, which is very common. "Although we had many applications come in from people both within and outside our organization," said Leyton, "the hiring committees found the best candidates for three of the four positions came from within the organization." Kathryn Lariviere (who was hired as the new executive director and was a former board member) said, "I feel like I've been interviewing for this position for the last six years!"

    Gaps in the Maps Survey Released 


    Down Syndrome Affiliates in Action (DSAIA), the National Down Syndrome Congress (NDSC) and the National Down Syndrome Society (NDSS) have partnered to ensure that all families have access to support and information from a local Down syndrome affiliate through the "Gaps in the Map" Project. The project's goal is to locate and document all Down syndrome support groups in order to identify what areas are not being served and then explore ways to provide that support to the "gap" areas. We need YOUR help in making this project a success by doing the following:
      1. Complete this BRIEF survey by clicking here.
      2. Forward this newsletter to all your friends in the Down syndrome community nationwide! Encourage them to fill out the survey!
      3. Tweet and share the survey link with other group leaders via social media!
      4. Talk about this project with at least one organization in the Down syndrome community today.
      5. Be creative! The more we share this project, the more families will receive the support and information they deserve!
      Stay tuned for a variety of fun and cool ways to share this project with your friends and friend organizations. Click herefor all the latest project details or visit us on Facebook
      For more information, contact Deanna Tharpe, DSAIA Executive Director, at or 701-425-7129 or Allison Wixted, DSAIA Gaps in the Map Chair, at or 804-920-9643. 

    What To Know When You're Hiring


    Hiring staff does have measurable benefits.  According to Maureen Gallagher and Louise Borke of Massachusetts Down Syndrome Congress (MDSC), it not only frees the board up to focus on governance rather than day-to-day operations, but also provides more responsiveness to your membership and consistency in your quality and programs.  If your decision is to hire staff, plan to devote 3-6 months to create the strategic plan, determine what position to hire first, and determine what you can afford (including salary and benefits). 



    Try researching other similar organization and the competitive landscape for professional staff in your area. Be sure and review the DSAIA 2011 Demographic Survey which includes staff number and salary information. Before you start hiring, ensure you have enough funds to pay for the staff person and related expenses for at least one year. For more information from MDSC's presentation on Hiring Staff from the 2012 DSAIA Leadership Conference, visit the DSAIA Repository’s 2012 Conference Powerpoints section.


    To get ahead of the tax and regulatory issues regarding hiring your first staff person, review the information from Charlene Hill's (DSAIA Treasurer) presentation from the 2012 Conference entitled "We've Hired Staff: Now What?". Both the MDSC and Hill presentations are full of information sure to help you as you start this journey. A large variety of employment documents (including Employee Manuals, Applications, Evaluation Tools, etc.) can be found in the DSAIA Repositoryunder Operations and Administration/Employees.

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


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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