What do other Down syndrome association executives make? What about program directors? Does it depend on their budget or membership? What about benefits and evaluation? These are just some of the questions we were asked at DSAIA on an ongoing basis - and questions that came up during a Leaders' Circle last year. Rather than speculate, that Leaders' Circles worked with DSAIA to create a comprehensive compensation survey for Down syndrome organizations.
The new DSAIA Staff & Salary Report is now available to DSAIA members. It includes data from 80 Down syndrome organizations and is broken down into budget categories for ease of use. DSAIA members can view the report by downloading it in the Event section of our website.
The document is available to nonmembers - click here for more details.
Down Syndrome Affiliates in Action announces the addition of Courtney Dunevant to its staff as Program Assistant. "We couldn't be more thrilled about adding Courtney to our team," said Deanna Tharpe, Executive Director. Dunevant brings a wealth of experience to the organization in the areas of communication, membership management, and customer service. In her role as Program Assistant, she will assist the many committees working on various programs and services offered by DSAIA as well as work with members directly to coordinate information and resources.
"I am thrilled to have this opportunity to serve our amazing community of Down syndrome affiliates," said Dunevant. "This position means so much to me not only because I am personally connected to Down syndrome but also because I believe in the power and importance of the DSAIA and ultimately the good works of the organizations we serve."
"Courtney's experience with member associations has already made her a key addition to the DSAIA family," Tharpe continued. "We view this addition as a sign of our commitment to providing increasing value to our membership. I'm confident that she will play a key role in providing high-quality customer service for our members."
Affiliates from across the nation were recognized for their accomplishments during the annual DSAIA Leadership Conference in Charlotte, NC in early March. The Affiliates in Excellence Awards spotlight Down syndrome associations across the nation that have excelled in various categories and are sponsored by MetLife Center for Special Needs Planning. One of the highlights of the ceremony is the "Affiliate of the Year" award presentation(s) which went to Down Syndrome Association of Delaware and Down Syndrome Association of Central Texas.
"We're delighted to recognize the accomplishments of the local Down syndrome organizations," said Deanna Tharpe, Executive Director of DSAIA. "It's gratifying and inspiring to have received so many remarkable entries for this year's competition. We look forward to acknowledging superior efforts by our membership for years to come."
Details about the Affiliates in Excellence Awards, DSAIA, and the list of award recipients that were announced on March 6, 2016 are available here.
Book: The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis Through Adulthood
Authors: Jen Jacob and Mardra Sikora
Review by Anne Mancini, Executive Director and Trisha Oyos Stibbe, Parent, DS Alliance of the Midlands
Full disclosure! We know - and love - Mardra and Marcus.
Anne: When I schedule a meeting with Mardra I block out some extra time, because I know we are going to find more to talk about than what's on our agenda. Marcus and I are in a book club together. I get to see these two in action when I attend an author reading of Black Day: The Monster Rock Band. They are joyful and fun to be around, but Mardra isn't afraid to tell the hard truths. She is not apologetic about her choices and opinions. She is a well-educated and passionate advocate for Marcus and his peers. So I knew before I opened the book that there would be a lot of Mardra's heart in it.
Trisha: Claire was only a few months old when I first met Mardra and Marcus. My husband and I listened to this power duo talk about advocacy and were so inspired. Seeing a young adult with Down syndrome being fully engaged and immersed in the "real world" gave both of us such hope about Claire's future. After speaking to Mardra, my passion for advocacy grew and I know it was due to her setting such a strong example.
Anne: The very first thing I appreciated about The Parent's Guide to Down Syndrome is the advice to seek out a local Down syndrome association. As the director of the Down Syndrome Alliance of the Midlands, I have the privilege of watching my families welcome each other to the community and share stories and support. This book will provide that sense of community for any parent not quite ready to dive into a local organization or who unfortunately does not have one geographically accessible.
Anne: Trisha and I are proud to recommend this book to parents of children with Down syndrome. We think wherever a parent might be on the journey, a connection to information and other parents' stories is extraordinarily helpful and can be found in these pages.
The book is available at Barnes & Noble (in stores and online) as well as Amazon. For special offers, click here. To read the complete review, click here.
The National Down Syndrome Congress, together with other disability and aging advocacy groups, have issued a toolkit to help advocates push for strong implementation of the new Home and Community Based Services (HCBS) Settings Rules in their states. The new HCBS Settings Rules require all settings funded by Medicaid HCBS programs to, among other things, provide opportunities for participants to be integrated in and engage in community life, have access to the community, control their personal resources, and seek employment and work in competitive settings. States have until March 2019 to transition their HCBS programs into full compliance with the new settings requirements.
"Most adults with Down syndrome need support services to live and work in the community. The HCBS rules, part of the state/federal Medicaid program, are the manner in which these services are funded. Parents and self-advocates need to be aware of and advocate for strong enforcement of these new rules to ensure life choices based on the individual's needs and desires," said Susan Goodman, NDSC's Director of Governmental Affairs. All states have already submitted to the Center for Medicare and Medicaid Services (CMS) their initial transition plans, and CMS has provided feedback to states about needed improvements and next steps for amending and implementing their plans. "The next several months are a critical time for advocacy because that is when states will be making important decisions about their transition plans," she said.
This new toolkit provides advocates with detailed information about the HCBS Settings Rule and provides action steps for advocates to impact implementation of the new rules in their states.
Global Down Syndrome Foundation (GDSF) has announced their new Self-Advocate Employment Initiative Grants. The grants will empower local Down syndrome organizations to provide jobs for individuals with Down syndrome.
Applications for the grants are due to Global by 5:00 pm (MST) on Friday, January 29, 2016. The grants will be awarded in amounts up to $2,000 and winners will be announced at the Down Syndrome Affiliates in Action Leadership Conference in Charlotte, NC in March 2016.
Visit the GDSF website for more information about the Self-Advocate Employment Initiative Grants, including the application and eligibility requirements. To become a Global Member, visit the Down Syndrome World website.
Check Us Out on the App Store!
The mobile app for the 2016 DSAIA Conference is ready to download and enjoy! Get involved in all the pre-event excitement including cool contests!
You'll find the app (Conbop Mobile App) in both Google Play and the Apple store. Log in to the event using the code "dsaia2016" and start engaging now with other attendees while planning your "learning" schedule!
New & Notable
Gain Approval to attend DSAIA - download
Win a suite upgrade with our 10 in 10 Contest!
Help DSAIA celebrate 10 years of incredible training and networking for local DSA leaders by supporting the conference through sponsorship. Your contribution allows us to keep costs down and still offer incredible programming and resources to our attendees. Learn moreabout the many options.
Down Syndrome Affiliates in Action
5010 Fountainblue Drive
Bismarck, ND 58503
701.425.7129 firstname.lastname@example.org www.dsaia.org
Copyright © 2013 Down Syndrome Affiliates in Action
Newsletter December 2015
For Your Ears Only: Board Members Topical Call
Tue, Dec 1st
8 pm ET/5 pm PT
10 Steps To A Successful Fundraising Campaign
Tue, Dec 8th
1 pm ET/10 am PT
Miss a webinar?
Find it in the Webinar Archiveon the DSAIA website! Always available to our members any time!
20 Effective Nonprofit Mission Statements
Stop Being a Slave to Social Media Marketing
How 'Founder Syndrome' Can Take Down a Nonprofit
March 3 - 6, 2016
Enjoy a Suite Upgrade - when you win our 10 Things in 10 Years Contest!
Our sessions are scheduled - great experiences await you!
Get Ready To Be Energized!
Dana Lightman, motivational speaker, will deliver the Saturday keynote address at the 2016 DSAIA Conference in Charlotte. Dana specializes in the field of optimism and positive psychology with a doctorate in Behavioral Science.
Get ready to unleash your star potential in this energizing mid-morning session! You'll learn proven steps to break through negative patterns and build up positive practices. Dana will also be presenting a breakout session on Saturday afternoon entitled "There's No Such Thing As Difficult People." Check out the full lineup of sessions on our website.
Interested in the conference? Learn about the scholarship opportunities, suite upgrade contests and more on ourwebsite!
You're Doing Amazing Things - Be Recognized For Them!
Affiliates in Excellence is in its 3rd year of recognizing the incredible accomplishments of DSAIA members across the nation. Applications are now open through January 31, 2016. With eleven entry categories and three budget categories, DSAIA has made sure that we are recognizing what our members are doing - no matter where they are located or how large they are. To view last year's winners, click here.
Is your organization doing amazing things? Stand up and be recognized! Complete this short form to submit your application today! Learn all the details on our Affiliates in Excellence page. Awards will be presented at the annual leadership conference in Charlotte in March 2016, sponsored by MetLife Center for Special Needs Planning.
As a board member, you have a different role (and perspective) as a leader in your organization. DSAIA's latest topical call will focus only on the board member and the issues that they face as the governing body (and sometimes worker bees) of their Down syndrome association.
When registering for the call, you'll be asked to submit questions to be considered for conversation. These questions will be introduced anonymously but can be commented on in the call by the questioner if they wish.
The call will be moderated by Sterling Lynk, DSAIA Board President. Registrants of this topical call will be screened for approval. (No staff will be allowed on this call.)
Copyright © 2015 Down Syndrome Affiliates in Action
Come "Hangout" With Us Nov 19th!
Join us on November 19th at 8 pm ET/5 pm PT for a live Hangout On Air! This month, we'll be talking "all things conference" to learn more about the 2016 event and answer YOUR questions.
Special guests include members of the DSAIA Conference Committee covering such topics as registration, technology, programming and especially the fun "after hours" events. Watch it live on YouTube.
Affiliates in Excellence - Open for submissions!
Early Bird Ends December 1st!
You still have a few weeks left to take advantage of the Early Bird Discount for the 2016 conference! And for DSAIA members, don't forget to use the Member Discount Code for an add'l $200 off per person. You'll find it in the Member Resources section of our website.
Small and startup organizations are given a great opportunity to attend the conference with scholarships that may even include lodging! Find out more about the criteria here.
Are you a veteran organization that wants to pay it forward? Contact DSAIA about donating to theScholarship Fundtoday!
P.O. Box 2122
Bismarck, ND 58502
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 Action1335 34th St NEParis, TX 75462
Monday - Friday
8 am - 5 pm Central
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