DSC2U — Information for Down Syndrome Organizations

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<div class="navbar-collapse collapse" id="navbar1"> <ul class="navbar-nav nav-fill w-100"> <li class="nav-item "> <a class="nav-link" href="home"> Caregivers </a> </li> <li class="nav-item "> <a class="nav-link" href="providers"> Providers </a> </li> <li class="nav-item active"> <a class="nav-link" href="organizations"> <span class="d-none d-lg-inline"> Down Syndrome Organizations </span> <span class="d-xs-inline d-lg-none"> Organizations </span> </a> </li> <li class="nav-item "> <a class="nav-link" href="insurers"> <span class="d-none d-lg-inline"> Healthcare Insurers </span> <span class="d-xs-inline d-lg-none"> Insurers </span> </a> </li> <li class="nav-item "> <a class="nav-link" href="plans"> <span class="d-none d-lg-inline"> Plans and Pricing </span> <span class="d-xs-inline d-lg-none"> Plans </span> </a> </li> <li class="nav-item"> <a class="nav-link" href="https://giving.massgeneral.org/donate/dsc2u" target="_blank"> Donate </a> </li> <li class="nav-item "> <a class="nav-link" href="contact"> <span class="d-none d-lg-inline"> Contact Us </span> <span class="d-xs-inline d-lg-none"> Contact </span> </a> </li>  </ul> </div> </nav> </header> <main> <div class="jumbotron page-jumbotron"> <div class="container"> <h1 class="display-4"> Information for Down Syndrome Organizations </h1> </div> </div> <div class="section"> <div class="container"> <div class="row"> <div class="col-12"> <br/><br/> <p>Only about 5% of the 212,000 families in the U.S. who have loved ones with Down syndrome live in an area where they can visit a Down syndrome specialty program like the one at Massachusetts General Hospital/Harvard Medical School. We know that most hardworking primary care physicians have only one or two patients with Down syndrome in their practice, so it is both unreasonable and impractical to expect them to stay current on all of the healthcare recommendations for this unique population.</p> <p>We created Down Syndrome Clinic to You (DSC2U) to bring the best of health and wellness information about Down syndrome to caregivers and primary care physicians around the globe. We believe that location and personal finances should never prevent someone from accessing the best and most timely medical information for a loved one with Down syndrome.</p> <br/><br/> <a class="btn btn-info btn-lg btn-responsive" href="/resources" role="button">What You Get</a> </div> </div> <br/><br/> </div> </div> <div class="section"> <div class="container"> <div class="row"> <div class="col my-5"> <br /> <h1 class="display-4">Groups with DSC2U Discount Codes</h1> <p class="pt-4">The following Down syndrome organizations have purchased DSC2U discount codes for their members. If you are a member of one of these groups, please reach out to them directly to inquire:</p> <br/> <p> <a href="https://www.myDSC.org" target="_blank"> LuMind IDSC Foundation</a><br/> Michelle Slape, <a href="mailto:mslape@lumindidsc.org?subject=DSC2U: Down Syndrome Clinic to You" target="_blank">mslape@lumindidsc.org</a> </p> <hr/> <p> <a href="https://dsaco.net/" target="_blank"> The Down Syndrome Association of Central Ohio (DSACO) </a><br/> Elsie Ansong, <a href="mailto:juliet@dsoflou.org?subject=DSC2U: Down Syndrome Clinic to You" target="_blank">eansong@dsaco.net</a> </p> <hr/> <p> <a href="https://dsoflou.org/" target="_blank"> Down Syndrome of Louisville </a><br/> Julie Torzewski, <a href="mailto:juliet@dsoflou.org?subject=DSC2U: Down Syndrome Clinic to You" target="_blank">juliet@dsoflou.org</a> </p> <hr/> <p> <a href="https://www.dsani.org/dsc2u-a-personalized-care-plan" target="_blank">Down Syndrome Association of Northeast Indiana (DSANI)</a><br/> S. Yoder, <a href="mailto:s.yoder@dsani.org?subject=DSC2U: Down Syndrome Clinic to You" target="_blank">s.yoder@dsani.org</a> </p> <hr/> <p> <a href="https://www.dsact.org/" target="_blank">Down Syndrome Association of Central Texas (DSACT)</a><br> Laura Whitekettle, <a href="mailto:admin@dsact.org?subject=DSC2U: Down Syndrome Clinic to You" target="_blank">admin@dsact.org</a> </p> <hr/> <p> <a href="https://www.dspnt.org/" target="_blank">Down Syndrome Partnership of North Texas</a><br/> Kim Rocha, <a href="mailto:kim@dspnt.org?subject=DSC2U: Down Syndrome Clinic to You" target="_blank">kim@dspnt.org</a> </p> <hr/> <p> <a href="https://somethingextra.org/" target="_blank">Down Syndrome Association of Middle Tennessee</a><br/> Alecia Talbott, Executive Director, <a href="mailto:alecia@somethingextra.org?subject=DSC2U: Down Syndrome Clinic to You" target="_blank">alecia@somethingextra.org</a> </p> <hr/> <p> <a href="https://mdsc.org/" target="_blank">Massachusetts Down Syndrome Congress</a><br/> Sarah Cullen, <a href="mailto:scullen@mdsc.org?subject=DSC2U: Down Syndrome Clinic to You" target="_blank">scullen@mdsc.org</a> </p> <hr/> <p> <a href="https://www.grandstrandds.org/" target="_blank">Grand Strand Down Syndrome Society </a><br/> Gracie William, <a href="mailto:gwilli5341@aol.com?subject=DSC2U: Down Syndrome Clinic to You" target="_blank">gwilli5341@aol.com</a> </p> <hr/> <p> <a href="https://siliconvalleydownsyndromenetwork.wildapricot.org/" target="_blank">Silicon Valley Down Syndrome Network</a><br/> Emi Mason, <a href="mailto:svdsnprograms@gmail.com?subject=DSC2U: Down Syndrome Clinic to You" target="_blank">svdsnprograms@gmail.com</a> </p> <hr/> <p> <a href="https://www.dsnnn.org/" target="_blank">Down Syndrome Network of Northern Nevada</a><br/> Christina Ugalde, <a href="mailto:dsnnninfo@gmail.com?subject=DSC2U: Down Syndrome Clinic to You" target="_blank">dsnnninfo@gmail.com</a> </p> <hr/> <p> <a href="https://dspgwny.org/" target="_blank">Down Syndrome Parents Group of Western New York</a><br/> Gretchen White, <a href="mailto:dspg@dspgwny.org?subject=DSC2U: Down Syndrome Clinic to You" target="_blank">dspg@dspgwny.org</a> </p> <hr/> <p> <a href="https://clubtwentyone.org/" target="_blank">Club 21</a><br/> Pam Grassedonio, <a href="mailto:pam@clubtwentyone.org?subject=DSC2U: Down Syndrome Clinic to You" target="_blank">pam@clubtwentyone.org</a> </p> <hr/> <p> <a href="https://www.dsasg.org/" target="_blank">Down Syndrome Association of South Georgia</a><br/> Dora Harding, <a href="mailto:info@dsasouthga.org?subject=DSC2U: Down Syndrome Clinic to You" target="_blank">info@dsasouthga.org</a> </p> </div> </div> </div> </div> <div class="section" id="video"> <div class="container"> <div class="container-fluid"> <div class="row"> <div class="col text-center mt-5 mb-3 mx-xs-1 mx-md-5"> <div class="embed-responsive embed-responsive-16by9"> <iframe class="embed-responsive-item" src="https://www.youtube.com/embed/u-DlSQanj54?rel=0"></iframe> </div> </div> </div> </div> </div> </div> <div class="section pb-0" id="faq2"> <div class="container"> <div class="row"> <div class="col my-5"> <div class="page-header"> <h1 class="display-4">How your group can make discount options available to your families</h1> <p class="pt-4">We realize that some families may have difficulties with the user fee for DSC2U, so local Down syndrome organizations have an opportunity to subsidize part or all of these costs by purchasing “discount codes” for DSC2U.<p>  </div>  <p class="my-5"> Partial discounts are available to Down syndrome nonprofit organizations. A minimum order of $500 is needed. </p> <table class="table table-bordered table-striped text-center"> <thead class="thead-light"> <tr> <th scope="col"> Discount Coupons off full price <br/> (minimum order of $500) </th> </tr> </thead> <tbody> <tr> <td>$10</td> </tr> <tr> <td>$20</td> </tr> <tr> <td>$30</td> </tr> <tr> <td>$40</td> </tr> <tr> <td>$49</td> </tr> <tr> <td>$69</td> </tr> <tr> <td>$89</td> </tr> </tbody> </table> <br/><br/> <a data-toggle="collapse" href="#collapseFAQ-en-8" aria-expanded="false" aria-controls="collapseFAQ-en-8"><h4 class="display-5">How do these discount codes work for your families?</h4></a> <div class="collapse" id="collapseFAQ-en-8"> <p>Each discount code is unique and can only be used once. At check-out, the family member will have the opportunity to enter the discount code that they receive from you. Their fee will be discounted by the amount you purchased, and they will be charged for any remaining amount. For example, if you purchased a discount of $30, then the family would be charged the cost of their selected DSC2U plan less $30. </p> <p>If interested, please contact us at <a href="mailto:dsc2u@mgh.harvard.edu" target="_blank"> dsc2u@mgh.harvard.edu</a>. A minimum order of $500 in discount codes is needed. Families can use the discount codes toward any of the pricing plan options. Codes can only be redeemed only once, and credit balances are not available for unused portions of a code. (That is, if a family used a $69 coupon to purchase a $49 plan, they would not have a $20 credit balance to use for future purchases.) All discount codes expire 12 months after the date of purchase. Unused discount codes cannot be returned.</p> </div> <br/> <a data-toggle="collapse" href="#collapseFAQ-en-9" aria-expanded="false" aria-controls="collapseFAQ-en-9"><h4 class="display-5">Can you return any unused discount codes?</h4></a> <div class="collapse" id="collapseFAQ-en-9"> <p>No. Once purchased, the discount codes cannot be refunded.</p> </div> <br/> <a data-toggle="collapse" href="#collapseFAQ-en-10" aria-expanded="false" aria-controls="collapseFAQ-en-10"><h4 class="display-5">How long are the discount codes good for?</h4></a> <div class="collapse" id="collapseFAQ-en-10"> <p>The discount codes are good up to 12 months after the date of purchase.</p> </div> <br/> <a data-toggle="collapse" href="#collapseFAQ-en-11" aria-expanded="false" aria-controls="collapseFAQ-en-11"><h4 class="display-5">Can we purchase more discount codes?</h4></a> <div class="collapse" id="collapseFAQ-en-11"> <p>Yes, you can purchase more discount codes at any time. The minimal order is $500.</p> </div> <br/> <a data-toggle="collapse" href="#collapseFAQ-en-12" aria-expanded="false" aria-controls="collapseFAQ-en-12"><h4 class="display-5">Whom do I contact to discuss these options?</h4></a> <div class="collapse" id="collapseFAQ-en-12"> <p>Please inquire with our DSC2U team at <a href="mailto:dsc2u@mgh.harvard.edu" target="_blank"> dsc2u@mgh.harvard.edu</a>.</p> </div> <br/> </div> </div> </div> </div> <div class="section" id="faq"> <div class="container-fluid"> <div class="row"> <div class="col-4 col-no-padding"> <img src="/assets/images/home/echo-3.jpg" class="img-fluid" /> </div> <div class="col-8 col-no-padding"> <img src="/assets/images/home/echo-4.jpg" class="img-fluid" /> </div> </div> </div> <div class="container"> <div class="row"> <div class="col my-5"> <div class="page-header"> <h1 class="display-4">Frequently Asked Questions for Down Syndrome Organizations</h1> </div> <a data-toggle="collapse" href="#collapseFAQ-en-1" aria-expanded="false" aria-controls="collapseFAQ-en-1"><h4 class="display-5">What exactly is "Down Syndrome Clinic to You" (DSC2U)?</h4></a> <div class="collapse" id="collapseFAQ-en-1"> <p>We see DSC2U as a way for families to get up-to-date, personalized health and wellness information for their loved one with Down syndrome. When caregivers access DSC2U online, they will be asked to identify current symptoms in their loved one with Down syndrome along with any past medical or behavioral diagnoses and any recent blood work or diagnostic testing. DSC2U also contains optional sets of questions about nutrition, education, therapies, life skills, and community resources. Their responses will be analyzed by a computer, based on state-of-the-art guidelines designed by national Down syndrome experts. </p> <p>The caregiver will instantly receive two personalized documents: <a href="/assets/documents/en/CaregiverPlanExample.pdf" target="_blank">one for themselves</a> and <a href="/assets/documents/en/PCPPlanTemplate.pdf" target="_blank">one to share with their primary healthcare provider</a>. These documents contain customized suggestions that are designed to help their loved one get healthcare tailored to their own specific needs. The documents are based on the caregiver’s answers to the DSC2U survey, and draw on national guidelines for care of persons with Down syndrome. </p> <p>DSC2U does not offer direct access to physicians at Massachusetts General Hospital, nor does it offer caregivers access to MGH physicians by e-mail, text, phone, or videoconference. DSC2U offers instead the most current recommendations and resources to caregivers through personalized online documents.</p> </div> <br/> <a data-toggle="collapse" href="#collapseFAQ-en-faq-the-science" aria-expanded="false" aria-controls="collapseFAQ-en-55"><h4 class="display-5">What is the science behind DSC2U?</h4></a> <div class="collapse" id="collapseFAQ-en-faq-the-science"> <p>We tested DSC2U in a national randomized controlled trial with 230 families from around the U.S. who did not have access to a Down syndrome specialty clinic. DSC2U is effective. People with Down syndrome whose caregivers used DSC2U had a <a href="/assets/documents/en/DSC2U-visual-abstract.png" target="_blank">1.6-fold increase in adherence to recommended guidelines</a>. About 97% of caregivers found the output of DSC2U easy to understand, and 100% of caregivers would recommend DSC2U to other families. About 97% of primary care providers agreed with the customized recommendations of DSC2U, and 100% of primary care providers were interested in the information. You can read the <a href="https://rdcu.be/b6Hk4" target="_blank">full research paper</a>, <a href="https://www.pcori.org/research-results/2016/does-web-based-platform-caregivers-help-people-down-syndrome-get-recommended" target="_blank">this summary</a>, and/or listen to a <a href="https://media.acast.com/genepod/onlineaccesstodownsyndromehealth-caretool/media.mp3" target="_blank">podcast</a> summarizing the results.</p> </div> <br/> <a data-toggle="collapse" href="#collapseFAQ-en-2" aria-expanded="false" aria-controls="collapseFAQ-en-2"><h4 class="display-5">Who developed DSC2U?</h4></a> <div class="collapse" id="collapseFAQ-en-2"> <p>DSC2U was created by Dr. Brian Skotko, MD, MPP, and the clinical and research teams from the Down Syndrome Program at Massachusetts General Hospital, a not-for-profit academic hospital affiliated with Harvard Medical School. The team worked in close consultation with <a href="/team" target="_blank"> key stakeholders</a>, including parents and caregivers of people with Down syndrome, representatives of Down syndrome advocacy organizations, primary care physicians, and national medical experts. </p> </div> <br/> <a data-toggle="collapse" href="#collapseFAQ-en-3" aria-expanded="false" aria-controls="collapseFAQ-en-3"><h4 class="display-5">How is DSC2U funded?</h4></a> <div class="collapse" id="collapseFAQ-en-3"> <p>DSC2U was created with the help of a <a href="https://www.pcori.org/research-results/2016/helping-families-get-health-screening-recommendations-patients-down-syndrome" target="_blank"> generous grant</a> from the Patient-Centered Outcomes Research Institute (PCORI), a federally funded program established to help patients and their caregivers make better informed decisions about healthcare. This funding ended in July 2019. DSC2U has never accepted any funding from pharmaceutical companies or commercial entities.</p> <p>Now that the PCORI grant has ended, DSC2U continues to be maintained and updated by the same team at Massachusetts General Hospital but must pay its own way. It is solely maintained by philanthropic donations and user fees. </p> <p><a href="https://www.lumindidsc.org/" target="_blank"> LuMind IDSC Foundation</a> is the founding philanthropic supporter and will collaborate with Massachusetts General Hospital to bring DSC2U to more than 200,000 families who do not have access to a specialty Down syndrome clinic like ours.</p> <p>Donations and user fees are received and processed by Massachusetts General Hospital, and are used to cover the expenses associated with maintaining and improving this resource. These expenses include such things as ongoing review of new research results, administrative costs, and computer software updates. </p> </div> <br/> <a data-toggle="collapse" href="#collapseFAQ-en-4" aria-expanded="false" aria-controls="collapseFAQ-en-4"><h4 class="display-5">Does medical insurance cover the cost to families of DSC2U?</h4></a> <div class="collapse" id="collapseFAQ-en-4"> <p>Some insurance companies do cover the fee for families; a listing of such insurers can be found <a href="/insurers">here</a>.</p> </div> <br/> <a data-toggle="collapse" href="#collapseFAQ-en-5" aria-expanded="false" aria-controls="collapseFAQ-en-5"><h4 class="display-5">Will families be charged a fee to access DSC2U?</h4></a> <div class="collapse" id="collapseFAQ-en-5"> <p>Yes. We offer different pricing plans to suit different needs. These fees will cover the cost of expenses associated with maintaining and improving this resource. Some <a href="/insurers">insurance companies</a> do cover these fees for families; a listing of such insurers can be found <a href="/insurers"> here</a>.</p> <p>Because we realize that this cost may be prohibitive for some families, we are asking local Down syndrome organizations to underwrite a portion of this cost by purchasing “discount codes” for DSC2U. These codes may be shared with families who might not otherwise be able to afford DSC2U, or in any way that an organization sees fit.</p> </div> <br/> <a data-toggle="collapse" href="#collapseFAQ-en-6" aria-expanded="false" aria-controls="collapseFAQ-en-6"><h4 class="display-5">What languages is DSC2U available in?</h4></a> <div class="collapse" id="collapseFAQ-en-6"> DSC2U is available in English and Spanish. </div> <br/> <a data-toggle="collapse" href="#collapseFAQ-en-7" aria-expanded="false" aria-controls="collapseFAQ-en-7"><h4 class="display-5">What can your Down syndrome support group be doing right now to support DSC2U?</h4></a> <div class="collapse" id="collapseFAQ-en-7"> <p>Here are four steps that you can take right now to ensure that your families have access to this important information:</p> <ol> <li class="mb-3"><strong>Spread the word on social media.</strong> To make this easy and simple, we have <a href="/socialmedia"> drafted sample posts</a> for Facebook, Twitter, Pinterest, and Instagram, including photos that can be used. We have also created this <a href="https://youtu.be/u-DlSQanj54" target="_blank"> video on YouTube</a>, which you can share.</li> <li class="mb-3"><strong>Include information about DSC2U in your next e-newsletter.</strong> To make this easy for you, we have <a href="/newsletter">drafted a sample text</a>.</li> <li class="mb-3"><strong>Distribute copies of our <a href="/assets/documents/en/MGHfC-DSC2U-Provider-Handout-English.pdf" target="_blank">DSC2U flyer</a></strong> at any of your in-person membership events. </li> <li class="mb-3"><strong>Offset the costs for families in your area. </strong> You know your families best. Are there families in need who would not otherwise be able to access DSC2U? Or would you like to help make DSC2U available to all of your families? We ask that organizations consider purchasing discount codes, as described below, to help bring valuable health and wellness information to families. </li> </ol> </div> <br/> </div> </div> </div> <div class="container-fluid"> <div class="row"> <div class="col-6 col-no-padding"> <img src="/assets/images/home/drawing.jpg" class="img-fluid" /> </div> <div class="col-6 col-no-padding"> <img src="/assets/images/home/with_puppy.jpg" class="img-fluid" /> </div> </div> </div> </div> <div class="section" style="background-color: #ffffff !important"> <div class="container"> <div class="row mt-4 d-flex justify-content-around"> <div class="col-12 col-sm-6 text-center"> <img src="/assets/images/logos/pcori.png" class="img-fluid img-funded" /><br/><br/> <small> This work was partially supported through a Patient-Centered Outcomes Research Institute (PCORI) Research Award (<a href="https://www.pcori.org/research-results/2016/does-web-based-platform-caregivers-help-people-down-syndrome-get-recommended" target="_blank">AD-1507-31567</a>). </small> </div> <div class="col-6 col-sm-6 text-center"> <br class="d-block d-md-none"/> <img src="/assets/images/brands/lumind.png" class="img-fluid img-funded" /><br/><br/> <small> Founding Philanthropic Supporter </small> </div> </div> </div> </div> </main> </div> <footer class="footer"> <div class="container"> <div class="row"> <a href="#" class="go-top"><i class="fa fa-arrow-circle-up" aria-hidden="true"></i> <span>Top</span></a> <div class="col-12 text-center mt-3"> <small> © <span id="year">2024</span> <span>MGH Down Syndrome Program</span> | <span>v2.24.0.0-RELEASE</span> | <a href="/team" class="text-light">About Us</a> | <a href="/policies" class="text-light">Privacy Policy</a> | <a href="/terms" class="text-light">Terms of Use</a> | <a href="/feedback" class="text-light">Feedback</a> </small> </div> </div> </div> </footer>  <div class="modal fade" id="IEModal" tabindex="-1" role="dialog" aria-labelledby="IEModalLabel" aria-hidden="true"> <div class="modal-dialog" role="document"> <div class="modal-content"> <div class="modal-header"> <h5 class="modal-title" id="IEModalLabel"> <span class="dsc2u-browser-name"></span> Detected </h5> <button type="button" class="close" data-dismiss="modal" aria-label="Close"> <span aria-hidden="true">×</span> </button> </div> <div class="modal-body"> <p> We are sorry, DSC2U doesn't support your version of <span class="dsc2u-browser-name"></span>. </p> <p class="dsc2u-browser-instructions-ie" style="display: none"> Please upgrade to the latest version of <a href="https://www.microsoft.com/en-us/edge" target="_blank">Microsoft Edge</a> or use another modern web browser such as <a href="https://www.google.com/chrome/" target="_blank">Google Chrome</a>, <a href="https://www.mozilla.org/en-US/exp/firefox/new/" target="_blank">Firefox</a>, or Safari (Mac). </p> <p class="dsc2u-browser-instructions-edge" style="display: none"> Please upgrade to the latest version of Microsoft Edge using Windows Update or by following this link <a href="https://www.microsoft.com/en-us/edge" target="_blank">https://www.microsoft.com/en-us/edge</a>. </p> </div> <div class="modal-footer"> <button type="button" class="btn btn-secondary" data-dismiss="modal">Close</button> </div> </div> </div> </div> <script src="/webjars/jquery/2.2.0/jquery.min.js"></script> <script src="/assets/scripts/jquery/jquery.easing.min.js"></script> <script src="/assets/scripts/mghlcs/scrolling-nav.js"></script> <script src="/assets/scripts/mghlcs/modals.js"></script> <script src="/assets/scripts/modernizr/modernizr.js"></script> <script src="/assets/scripts/modernizr/modernizr-3.6.0.js"></script> <script src="/assets/styles/bootstrap-4.3.1/scripts/popper.min.js"></script> <script src="/assets/styles/bootstrap-4.3.1/scripts/bootstrap.min.js"></script> <script src="/assets/styles/bootstrap-4.3.1/scripts/tooltip.min.js"></script> <script src="/assets/custom/bootstrap-typeahead/typeahead.bundle.min.js"></script> <script src="/assets/scripts/masonry/masonry.pkgd.js"></script> <script src="/assets/scripts/mghlcs/common.js"></script> <script src="/assets/scripts/url-search-params-polyfill/url-search-params-polyfill.js"></script> <script src="/assets/scripts/mghlcs/switch-locale.js"></script> <script src="/assets/scripts/mghlcs/browser-check.js"></script> <script src="/assets/scripts/cookies/jquery.cookie.js"></script> <script src="/assets/scripts/mghlcs/cookies.js"></script> <div id="cookieConsent" class="container-fluid"> <div class="row pr-4"> <div class="col-12 col-md-8 col-lg-9" id="cookieConsentInfoLink"> We use cookies and other tools to enhance your experience on our website and to analyze our web traffic. 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DSC2U — Information for Down Syndrome Organizations