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By Heather Sachs
Chris Rodriguez and I are personally familiar with the challenges and expenses of having a family member with a significant disability, and the barriers to saving money in their name. When my daughter Leah (who has Down syndrome) was born 12 years ago, we were shocked when our attorney told us that we needed to write her out of our will and not put any funds in her name, as saving more than $2,000 in assets could disqualify her government benefits such as Medicaid and Supplemental Security Income (SSI). Chris has experienced the unfairness of these barriers to saving from a sibling perspective. His brother TJ has a significant intellectual disability, and he has watched his parents struggle all his life to meet his brother’s needs while carefully avoiding saving “too much” money in TJ’s name so that he could receive Medicaid and SSI, among other benefits. Chris and I are both on a personal mission to address this unfairness in the government benefits system.
Chris is the Executive Director of the ABLE National Resource Center (ANRC), and I am the ANRC’s Senior ABLE Advisor. We have worked together with the rest of the disability community for years to create an easy, affordable savings mechanism where people with disabilities and their families could actually save for the future without jeopardizing public benefits. In December 2014, these efforts were realized when the Stephen Beck, Jr. Achieving a Better Life Experience (ABLE) Act (PL 113-295) was passed at the federal level. Chris and I have worked tirelessly over the past few years to help over 48 states pass state versions of the ABLE Act and to provide support and guidance to over two dozen of these states to set up their own ABLE programs.
Now that ABLE accounts are available nationwide and there are many options from which to choose, we are focusing on educating the public about ABLE accounts – what they are, who qualifies for one, what the funds in the account can be used for, and how to choose the ABLE program that is right for you. The ANRC’s recent nationwide ABLE awareness campaign, #ABLEtoSave, saturated the nation with information about ABLE, yet there is always more education to be done.
We invite you to join us for our webinar that DSAIA is co-hosting with the National Down Syndrome Congress entitled “ABLE Accounts: People with Down Syndrome are Finally ABLE to Save for the Future,” on Thursday September 17, 2017 at both 1:00pm ET and 8:00pm ET. The webinars will be identical, except that Heather Sachs will be featured on the 1:00pm one and Chris Rodriguez will be leading the 8:00pm one. Register for the one that best fits your schedule at https://www.dsaia.org/event-2639680.
Last month, I flew 2,500 miles from Baltimore to Sacramento, Calif., to attend my first NDSC Annual Convention... as an exhibitor, representing DSAIA. (Full disclosure: this was only my second convention, and I was so happy to be back.) Exhibiting at NDSC can prove challenging because the attendees - mostly family members and self-advocates - are not DSAIA's typical audience. Yes, there are DSA leaders in attendance, but they can be few and far between. So this year, instead of addressing just our leaders' niche, we took our message to the grassroots to show the abundance of amazing local Down syndrome support in nearly every corner of the country.
NDSC attendees were drawn to our booth by a giant U.S. map generously dotted with the names of DSAIA's 80 member organizations. We encouraged passers-by to find their local DSA on the map, and mark their community with a pin as part of the #PinIt2WinIt challenge (obvious objective: most pins wins). At the end of the exhibition Saturday afternoon, nearly 300 people showed their love for their local DSAs. Cities and communities across the country colorfully erupted with pinheads representing the collective outpouring of support. Two DSAs, Down Syndrome Connection of the Bay Area and Silicon Valley Down Syndrome Network, emerged as the leaders of the #PinIt2WinIt challenge, and both organizations each received a comped registration to the DSAIA Leadership Conference in February. Congratulations!
As more and more people visited our booth, I noticed a disturbing trend: the vast number of people who either didn't have a local support group nearby or didn't know their DSA. I didn't see any particular area most affected - the trend traveled more or less across the map. In many cases, we were able to introduce the families to the DSA that served their communities. It felt incredibly satisfying to guide a new parent to their home DSA, which also just happened to be a neighboring exhibitor - instant gratification! DSAIA is also proud to have on its website what we believe to be the most comprehensive listing of local DSAs around the U.S. Because we directly serve the local Down syndrome organizations and their leaders, we want to be known as THE place where people find and gain access to the DSA that serves them and their Down syndrome community. www.dsaia.org/find-a-group
For some map pinners, a local Down syndrome support group was far from "local," showing the ever important and continuous need to foster leadership in communities with little or no local and direct support for Down syndrome. Our leaders have done an amazing job creating and growing local support groups that number in the 300s - it's an extraordinary feat evident by the hundreds of thousands currently served by Down syndrome affiliates. It's all the more reason we must continue our mission to increase the organizational capacities of all our DSAs - from the million dollar clubbers and seasoned associations to the nascent collectives and the passion of one. Because we all have the same mission for Down syndrome - and our vision is to make your mission come true.
By: Deanna Tharpe, Executive Director, DSAIA
I just moved back to Texas and guess what I did tonight!
I killed a snake.
Ok, I ran over a snake with my car.
Ok, I'm pretty sure I killed it.
I mean, I think I killed it. It looked pretty dead in my rearview mirror.
And what does that have to do with DSA leadership? Just give me a few minutes. I promise, I do have the navigation on. Plus, I told Catherine McDonnell-Forney of DSA of Minnesota I could write a blog post on this topic.
Think of the snake as that part of your job that is scary, repulsive, and maybe sometimes even can sneak up on you. You totally just run over that task with your "car" and leave it writhing on that Texas country road, hoping that it really is "dead" or completed to a point that it won't be bothering you again anytime soon. Hey, maybe it just slithered off and now it's someone else's problem.
So, is it wrong to run over that snake and cross your fingers it is out of your life? No, we all face issues or job duties that we just have to address quickly and move on. But we can't go through our days in our organization doing this every time a task rears its ugly head...hissing at us.
I know - you think I'm just talking to staff. Oh no! Board members are guilty of this as well. For every time a staff member doesn't update a database completely or hastily codes the bookkeeping entries for the accountant, there is a board member who only tried to make that member call one time or really only talked to that potential donor or board member once (and then drove off hoping that snake was dead).
So, I ran over a snake. I think it's dead. But to be honest, I'm really not sure.
But our duties as DSA leaders are NOT copperheads or rattlesnakes or water moccasins (Catherine stops me at this point and asks again why I moved back here). No, they are not. So no matter how badly we want to wipe our forehead and drive on to a more enjoyable activity, it's worth it to take the time to do it right.
This is the craziest blog post I have ever written. I hope you are both appalled and impressed by it.
By Laura Hathaway, Down Syndrome Guild of Southeast Michigan
Why become DSAIA accredited? Great question! You will be asking yourself this a few times during the DSAIA accreditation process. And, your reasons will change. We started with "because it looks really good to prospective DSGSEMI members, potential endowment funders, grant makers, and individual/ corporate donors". It makes a difference in their eyes when Down Syndrome Affiliates in Action, a well-respected national organization, recognizes you as having differentiated yourself among its members. In retrospect, that's just the tip of the iceberg. The real benefits go far deeper.
Accreditation requires the thoughtful examination of every aspect of your organization from both a human and a business perspective. Are you doing the right things for those you serve in the right organizational way? It's a balancing act. One that will continue long after your initial evaluation. Perhaps, it is more accurate to say that "becoming accredited" is not a single event but rather an intrinsic change to the lens through which you view your organization and, consequently, to your future decision making.
I have an outstanding board and ED. Really. I could not have asked for more committed or more brilliant traveling companions. Our year long accreditation journey required each and every one of them to bring "IT" to the table. Finance and insurance, human resources and organizational development, marketing and public relations, non-profit management and resource expansion, technology and security, and, advocacy in every sense of the word. That's the true value of the accreditation process.
My passionate stakeholders seized the accreditation's opportunities to collaborate and to create a more sustainable DSGSEMI that thinks long-term as well as efficiently manages its day-to-day operations. That's the desire that initially brought them to the DSGSEMI. It's not a bad legacy either.
Written by Deanna Tharpe, DSAIA Executive Director
If your board meetings are so long that you fear you will lose board members because of them….then you have a problem. Ask yourself these two questions:
If your board meetings are spanning hours and you are meeting quarterly…maybe it’s time to move to a monthly or bi-monthly meeting schedule. But more often than not, that is not really the issue. That is when we move to the second question. Do you really have that much business to handle….OR…are you perhaps spending too much time on committee business?
Solution: Consider moving toward a consent agenda. What is a consent agenda? A consent agenda, sometimes called a consent "calendar," is a component of a meeting agenda that enables the board to group routine items and resolutions under one umbrella.
As the name implies, there is a general agreement on the procedure. Issues in this consent package do not need any discussion before a vote. Unless a board member feels that an item should be discussed and requests the removal of that item ahead of time, the entire package is voted on at once without any additional explanations or comments.
Because no questions or comments on these items are allowed during the meeting, this procedure saves time. Routine, standard, non-controversial, and self-explanatory are adjectives that well describe consent agenda items. The following are some examples.
As a single item on the agenda, the consent agenda is voted on with a single vote - to approve the consent agenda. The key to the Consent Agenda’s effectiveness, though, is that there is NO DISCUSSION of that item! That’s right. All those things that would have taken 2 minutes here, 5 minutes there, 1 minute here - they are off the table in one vote. The vote sounds like this:
I move to approve the consent agenda.
I’ll second that motion.
There is a motion and a second to approve the consent agenda. All in favor, signify by saying “Aye.”
I move to approve the consent agenda.
I’ll second that motion.
There is a motion and a second to approve the consent agenda. All in favor, signify by saying “Aye.”
That’s it. NO discussion. And all those items that previously took ½ hour or more have now all been approved.
Because there will be no discussion of these items individually, using a consent agenda requires that board materials be provided in plenty of time - at least seven days - for board members to read them all. AND it requires that they read those materials!
Seems easy enough, right? But, wait, you say…..put our committee reports in the consent agenda and NOT have a 45-minute discussion on the color of our walk shirt? Yes. Let your committees do committee work! See…there is usually the big issue. So, 3rd question: Are you micromanaging your committees? If you are having 3-hour board meetings, you probably are. Even in a small organization with no staff and small board, you have to create committees and then let them do their job. The board provides oversight and direction. (This is a whole different blog post in itself so look for it later!)
So, what if you see something in a committee report that makes you uncomfortable or you have questions about? Questions are answered prior to the meeting. If you disagree or feel that an issue requires further discussion, then pull that item from the Consent Agenda and put it on the regular agenda to discuss. It’s not lock-down….it’s a tool to make your board meetings more productive. Because you should be spending time on oversight and direction and not on the color of your walk shirts. Trust me…you’ll thank me later when your board meetings drop to a reasonable time period and your board turnover drops.
You can institute a consent agenda at your next board meeting. Use this consent agenda proposal.
For the last two years I’ve served as board president of the Chesapeake Down Syndrome Parent Group in Baltimore. I transitioned into the position closer to three years ago from a burned-out president who was more than ready to move on. He asked me as vice president to take on more of the president’s duties so I could get acquainted with the roles and responsibilities of the position. When I started writing the agendas and leading the meetings, he started checking out. Don’t get me wrong, my predecessor is a great guy who led the board with fervor and determination for a long time, so I understand that when he got his chance to take a break, he made a break for it.
At the time of his early departure, I was not intimidated or overwhelmed. I was ready to take the helm. I had ideas and a passion for the mission and charged to inspire our leaders and volunteers to do great things for Down syndrome.
It’s two and a half years later, and I’m nearing my exit. I think I’ve been an effective leader, and I’ve had a lot of fun. But I’m also tired and want to move on to other things (like being director of membership and marketing for DSAIA). When I took the position in 2015, I knew I wanted to serve only two one-year terms. At the time, Chesapeake was an all-volunteer association and the commitment is extremely time consuming. I saw countless past board members burn out after their many, many years of service, and never return as a volunteer. This was not going to be me.
I started to search for the next president at least a year before my time was up. Every board member who I thought could successfully transition into the president position received my best pitch. Not an iota of interest. Some board members (like the ones who said no to president) encouraged me – even begged – to stay on one more year. But I held true to my initial commitment. I didn’t believe anything was going to change in that year that would inspire one of our leaders to emerge as president. Plus I wanted to stay on good terms with my family.
About two months before my term would end in June 2017, I made a last-ditch call to an incredibly qualified candidate: a board member who had only been on the board for less than a year but a long history with the Chesapeake Down Syndrome as well as in leadership outside the organization. I made my pitch. I was going to convince this guy no matter what that he was the best person for the job. There was silence. And he finally said “I was actually waiting for you to contact me about this.” Needless to say, he took the job.
I’m just weeks away from stepping down, and I’m actively working with our incoming president to inform him of important issues, go over protocols, share some dirty laundry and of course answer his myriad of questions. I have committed to stay on the board as immediate past president, to further help our new president step up with energy and confidence as well as take on a couple of small board development projects. My previous transition experience has certainly influenced my involvement in this transition. My presidency has been marked by many accomplishments and met goals, but I know I could have been even more focused and effective if I had access to continued guidance and support of the past president.
>>> Do you have your own transition story? Are you anticipating a transition at your association? Need to vent about a transition gone wrong? <<<
On Wednesday, May 24 at 8 p.m. ET, DSAIA member leaders will be talking transition during the Topical Call: Dealing with Board/Staff Transitions.
REGISTER NOW to guarantee a spot on the call because space is limited. Topical Calls are for DSAIA Members ONLY and will not be recorded or be available in the listening archive.
By Beth Kanter
Originally published as a guest blog post at MarketsforGood about how nonprofit data nerds can use data to set some new goals for 2017 to become healthier. Reprinted with permission from Beth Kanter.
The passion that many nonprofit data nerds feel for our work is a double-edged sword. On the one hand, that fervor helps us to keep going in the face of difficult challenges, like analyzing a huge data set. On the other hand, we can be so driven running data visualizations at the keyboard for hours that we don’t stop to refuel or even notice we are experiencing symptoms of burnout.
In my new book, The Happy Healthy Nonprofit: Strategies for Impact without Burnout, co-authored with Aliza Sherman, we lay out the symptoms and causes of burnout and the remedies through deliberate self-care. And while we discuss strategies for bringing self-care into the workplace or”We-Care,” we believe it is important to begin with the individual.
The practices for self-care that we describe in the book are based on insights that we gleaned from putting the techniques into practice over the past few years. As someone who loves using data for decision-making, I found the health data generated by my Fitbit was highly actionable. It helped me become aware of my unhealthy habits and pivoting to more healthy ones, despite what some vocal critics of fitness trackers say.
If you are responsible for working with data at your nonprofit, it probably one of many other responsibilities on your plate. So, where can you start to make a noticeable change in the way you work and life to become more healthy?
Start with getting enough sleep.
According to the CDC, insufficient sleep is a public health problem. Don’t fool yourself by thinking you can sleep when you are dead or that cheating yourself out of a good night’s sleep by working into the wee hours. Sleep deprivation can lead to an increased risk of chronic diseases such as diabetes, stroke, high blood pressure, heart disease, obesity, and poor mental health, as well as early death.
When you don’t get enough sleep, it is like showing up to work drunk. Would you analyze surveys after tossing several shots of Tequilas?
How much sleep does your body actually need? Is there a magic number? The amount of hours per night varies from person to person and is different based on age. The National Sleep Foundation, a champion of sleep science and sleep health for individuals, undertook a comprehensive research study to answer the question of sufficient sleep and provides evidence-based guidelines on how much sleep you really need at each age. Drum roll, please… Adults need between seven and nine hours of sleep per night.
While there are a variety of different gadgets that you can use to track your sleep, I use the Fitbit Charge 2. And while the trackers can’t determine if you really are sleeping, it records the total time asleep, number of times restless or awake and total time restless based on your body movement. So, remember it is only a guide.
I logged my sleep hours, but I also kept a journal to record my mood, ability to concentrate and personal productivity. While these subjective measures, I discovered that my magic number of sleep hours about 7 hours and 45 minutes.
The value of this exercise was that it inspired me to rethink my routine about bedtime rituals. I realized that I was in front of my computer monitor, trying to squeeze out one more email or just one more bar chart. And, that staring into a monitor right before bed did not make it easy to fall asleep quickly. In fact, the “blue light” from our computers or mobile phones is known to disrupt your melatonin levels and delay the onset of sleep.
I started with a better bedtime ritual for myself that including meditation and other calming activities which allowed me to settle into a less agitated state to get some rest. Having my sleep data in hand allowed me to set a sleep schedule and stick to it – and my Fitbit also sends me notifications of when I should start my bedtime routine.
I started with working on getting enough sleep each night. What I discovered is that once I was able to achieve my optimal number of 8.25 hours per night, I felt a lot better and had much more discipline to start to build other healthy habits – such as daily exercise.
In terms of fitness, simply adding any type of movement in your day can invigorate you and could save your life. As Nilofer Merchant points out in her popular Ted Talk, “sitting is the smoking of our generation.” Again, my Fitbit was really useful in helping me to become aware of my habits.
I started with tracking my baseline activity level: about 2,000 steps a day. Seeing this data forced me to rethink how much time I was spending on my rear end in front of a monitor staring at a dashboard. I wasn’t only sedentary most of the day but I was even using her computer keyboard as a lunch tray.
I started off with modest step goals, and added steps incrementally each week, 1,000 at a time, all the while monitoring my progress on Fitbit dashboard. It inspired to think about ways to get more steps in during day — take a walk at lunchtime – and wow add another 2,00 steps.
Each week, I kept upping my goal by just 1,000 steps until I got to 10,000 and beyond. Not only was I able to drop weight and improve my health biometrics like blood pressure and cholesterol numbers, but I discovered that walking helped me manage stress and improve my ability to think clearly. I also found walking was a great time to reflect on what the data means – a brief walk does wonders for improving your pattern analysis.
Recent studies show that it is important not to sit for prolonged periods of time because this is linked to higher incidences of diseases. Therefore it is important to move for a few minutes each hour during the day. My tracker now comes with a feature that will notify me every time I need to do those 250 steps. I have this notification not to be a distraction but as a useful reboot of my brain to refocus my concentration – and I am avoiding potential health problems.
If 2017 is the year for you to start to become a happy and healthy data nerd, the process might sound familiar. Identify a goal, track your progress, and reflect on how to improve your results.
Learn more about self-care for nonprofit leaders by joining us for the upcoming webinar "Who's Helping the Helpers? Self-Care for Affiliate Leaders" on January 19th.
By Baloo Van Bergen
You know those jokes about the retired old guy driving his wife bonkers? Well, I am here to give you the dog-gone truth about my recently-retired Girl and all her groaning about missing #DSAIA2017. In fact, it’s been a downright CAT-astrophe, as far as yours truly is concerned.
Who am I, you ask? Why, I am but a simple, handsome (yet pawsitively humble) Portuguese Water Dog named Baloo and my Girl is Amy. Amy retired from the DSA of Central Florida in April 2016 and we have been leading a life off the leash ever since.
Back to me and my complaints. When I hear her moaning about missing Cincinnati this year, she sighs about it being the first DSAIA conference she will skip since 2007 B.B (Before Baloo.) Fortunately, I distract the Girl often by barking at killer squirrels in my backyard…and sometimes, I distract her by barking at nothing at all. Between all that barking, squeaky toy enticements and full body massages (mine, not hers), here is some of what she will miss most:
So, don’t fur-get to register for DSAIA2017 which will be held dually with the Buddy Walk® Conference Feb. 23-26 in Cincinnati, Ohio. And if anyone wants to get the Girl out of my fur for a few days, please invite her to attend with you because this retirement thing has been RUFF on me.
Every week, I find myself discovering another really cool online tool that helps be do my job better and more efficiently. Here's a list of my favorite online tools of 2016:
Canva makes graphic design easy for even the most design challenged. It uses drag-and-drop tools and a huge library of stock photos, fonts and even design templates. I designed a some infographics like a pro this year. There's no way I could have tackled that feat with Publisher or InDesign. Best of all its free! www.canva.com
I'll never go back to PhotoShop. PicMonkey makes it so simple to adjust your photos anywhere online. Especially useful for the super-amateur photojournalist who just needs to crop out a photobomb or resize a picture for Instagram. It's been a saving grace for me editing images for the DSAIA newsletter. www.picmonkey.com
How many hours do your volunteers work? How many hours are you working? It's probably more than you think and with Toggl you won't have to guess again. This free online app lets you track your time on multiple projects for multiple clients, and runs a report at the end of your desired time period. If time is money, think about all those in-kind donations you can report. www.toggl.com
Evernote is one of my favorite tools ever. Gone are the days of sticky notes and numbers written on the back of an envelope. It all goes in to Evernote. I've been using it for years to keep everything from notes during a conference call and my husband's Chipotle order to scans of important documents and webpages I want to save for later. I've got the notes synced on my phone, tablet and computer so I can access them pretty much anywhere. www.evernote.com
Basically big budget technology at nonprofit prices. Nonprofits need to run efficiently, so don't let steep price tags block you from your best work. Register for an account and your nonprofit has access to the most coveted software and productivity tools in business. There's hardware too - so get rid of your 2001 dinosaur and buy a refurbished laptop for next to nothing. www.techsoup.com
Sprout Social makes keeping up with social media marketing so easy. Post your messages and news on one platform and it distributes to multiple social media sites. You can also schedule posts and save drafts for posting later. In 30 minutes, I can schedule a week's worth of content to Facebook, Twitter and LinkedIn. www.sproutsocial.com
My newest love interest. Quik by GoPro lets you create and edits video set to music using your own photos that you can share with everyone you know. Simply select the photos you want, add a cover and titles if you want, choose your music and presentation style and you're done. Professional and fun - it let's you make a splash of your event photos, show off an amazing or recognize a volunteer's contributions - and it all can be done from your smartphone. https://quik.gopro.com
Massachusetts Down Syndrome Congress (MDSC) has built an employment initiative that engages employers and opens doors for good, meaningful jobs for the self-advocate members in their community. "Your Next Star" was launched two years ago and is a clarion call for employers to diversify their workforces by including people with Down syndrome and other disabilities.
MDSC Communications Director Josh Komyerov and Executive Director Maureen Gallagher will co-present a session at DSAIA 2017 which will cover the benefits of a diverse workforce, innovative approaches to hiring people with disabilities (including customized employment opportunities), examples of successful companies/employers and approaches that lead to success. Special emphasis will be paid to the range of jobs that people with disabilities can work. "We look forward to sharing our expertise so other organizations can understand the dire nature of the current situation and ultimately build their own employment initiative to make a real difference in their communities," said Komyerov.
More incredible sessions geared toward teens/adults in the Down syndrome community are also on the schedule including:
Learn more about these and other great sessions offered at the DSAIA Leadership Conference in February 2017.
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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