To view this newsletter online: http://eepurl.com/bxpIrb
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.
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: http://downsdesignsdreams.org/adopt-a-jean/adopt-a-jean-start-your-project.html
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: http://down-syndrome-affiliates-in-action.crushpath.me/dsaiadirector/spots/23.
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!
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.
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.)
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:
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's 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.
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:
Resource Library Documents:
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.
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.
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:
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 email@example.com.
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 www.anotherglimpse.com.
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.
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.
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!
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 Cincinnati.com. 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.
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!
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!
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.
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.
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.
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.)
Hiring Staff: A New Trend in the DS Community?
Gaps in the Maps Survey Released
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 Repositoryâ€™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.
What Makes Your Readers "Click"
In a recent analysis of their newsletter, Madison Area Down Syndrome Society found what stories generate the most interest to their readers. It is harder and harder to compete with the amount of information that your members are bombarded with on a day-to-day basis, so knowing which stories are more likely to pique their interest is a vital bit of information.
So, what did MADSS find? Looking at a year of click-throughs, they found that the majority of "opens" were on human interest or inspiring stories about people with Down syndrome. Next on the list were family and personal accounts of living with a child/family member with Down syndrome and parenting a child with Down syndrome. Other topics are listed in order below:
While interest seems to mainly be in stories about other people, MADSS' newsletter volunteer Alyssa Skiba noted that members are also interested in what the government is doing to help people with disabilities and how parents/family members can contribute to the healthy growth of their children.
Thanks to MADSS for sharing their research. Want to learn more about what makes a great newsletter? Read this interesting article about how to avoid the most common newsletter mistakes.
Are You Covered?
Your board members are
volunteers who often make difficult decisions. That is why your organization should have Directors and Officers (D&O) insurance to protect them. The question is not "can you afford it" but rather "how can you not?" Board members can be sued individually or as a group over a variety of reasons. Can your organization withstand a lawsuit and the costs involved?
Not having such insurance can make it difficult to attract and retain good board members, who simply cannot afford to serve if they run such risk to their personal assets. Some professionals are unwilling or unable to serve on a board without D&O insurance.
Learn more about coverage for both D&O and General Liability insurance by watching our two-part series entitled "Are You Covered?" in the DSAIA Repository. For discounts on insurance for your group, be sure and download the V.I.P. Insurance Discount Offer.
Self-Advocate Leadership A Top Priority
DSAIA Board Members (from left to right): David Egan, Joe Meares & Doris Erhart
Including self-advocates in the board room successfully is the goal of the newly formed Self-Advocate Leadership Committee. The committee, co-chaired by DSAIA board members Doris Erhart and David Egan, presented sessions at the 2012 DSAIA Conference and is now hard at work developing resources and training for affiliates.
The committee has already started compiling items to be included in a "toolkit" for boards. The toolkit's purpose is to give groups the necessary resources to make self-advocates a productive member of the board. Following the formulation of the toolkit, the committee plans to present a training webinar and present breakout sessions at the 2013 conference in Cincinnati.
"While we have a good starting number," explains Doris Erhart, "we still need committee members with a wide range of backgrounds. We would like to have affiliate board members both with and without Down syndrome as well as those from groups who do not have a self-advocate on their board." If you are interested in joining the committee, contact Doris Erhart or David Egan today.
Down Syndrome Affiliates in Action
P.O. Box 2122
Bismarck, ND 58502
701.425.7129 firstname.lastname@example.org www.dsaia.org
Copyright © 2012 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
Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. Learn More
Down Syndrome Affiliates in Action
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Bismarck, ND 58503
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