{"id":353,"date":"2023-07-27T16:00:48","date_gmt":"2023-07-27T20:00:48","guid":{"rendered":"https:\/\/sites.bu.edu\/rubenstein\/?page_id=353"},"modified":"2026-03-16T11:52:26","modified_gmt":"2026-03-16T15:52:26","slug":"promise-idd","status":"publish","type":"page","link":"https:\/\/sites.bu.edu\/rubenstein\/promise-idd\/","title":{"rendered":"PROMISE IDD"},"content":{"rendered":"<p><strong><span style=\"color: #000000;\">Policies for Reproductive Outcomes in Medicaid\u2013Improving Services for Enrollees with Intellectual and Developmental Disabilities (PROMISE IDD)<\/span><\/strong><\/p>\n<p><span style=\"color: #000000;\"><em>Funding: Eunice Kennedy Shriver National Institute of Child Health and Human Development,<\/em> <a href=\"https:\/\/reporter.nih.gov\/search\/k4AdIZtpA0CMfNsF7Ujlig\/project-details\/11010029\">1R01HD109135-01<\/a><\/span><\/p>\n<p><span style=\"color: #000000;\"><em><span class=\"NormalTextRun SCXW166819469 BCX0\">PI: Eric Rubenstein, PhD <\/span><span class=\"NormalTextRun SpellingErrorV2Themed SCXW166819469 BCX0\">ScM<\/span><\/em><\/span><\/p>\n<p><a href=\"\/rubenstein\/files\/2026\/03\/PROMISE-IDD-Flyer-v.2_2.20.26.pdf\"><img loading=\"lazy\" src=\"\/rubenstein\/files\/2026\/03\/PROMISE-IDD-Flyer-v.2_02.20.26.png\" alt=\"PROMISE IDD Flyer\" width=\"491\" height=\"636\" class=\"aligncenter wp-image-931 size-medium\" style=\"border-radius:10px\"\/><\/a><br \/>\n&nbsp;<\/p>\n<p><span style=\"color: #000000;\">If you are interested in participating or learning more, please fill out this study interest form:<\/span><\/p>\n<div style=\"text-align: center;\">\n<span style=\"color: #0000EE; font-size: 1.3em; font-weight: bold;\"><a href=\"https:\/\/bostonu.qualtrics.com\/jfe\/form\/SV_2nlBQQr6CrHsk18\">Study Interest Form<\/a><\/span>\n<\/div>\n<p>&nbsp;<\/p>\n<hr \/>\n<p><span style=\"color: #000000;\"><strong>Parents with disabilities: Tell us your pregnancy story!<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">You may be eligible if:<\/span><\/p>\n<ul>\n<li>You have a thinking, learning, or developmental disability.<\/li>\n<li>You were pregnant in the last 10 years.<\/li>\n<li>You used Medicaid during your pregnancy.<\/li>\n<\/ul>\n<p><span style=\"color: #0000EE; font-size: 1.3em; font-weight: bold;\"><a href=\"https:\/\/bostonu.qualtrics.com\/jfe\/form\/SV_2nlBQQr6CrHsk18\">Study Recruitment<\/a><\/span><\/p>\n<p><span style=\"color: #000000;\">For our research study, we are looking for people with autism spectrum disorder, Down syndrome, or other intellectual and developmental disabilities to participate in a one-hour online interview about how using Medicaid affects pregnancy experiences. Participants will receive a $50 Visa reward gift card for their time.<\/span><\/p>\n<p><span style=\"color: #000000;\">Examples of IDD diagnosis can include various conditions, such as:<\/span><\/p>\n<ul>\n<li><span style=\"color: #000000;\">Autism<\/span><\/li>\n<li><span style=\"color: #000000;\">Cerebral palsy<\/span><\/li>\n<li><span style=\"color: #000000;\">Fragile X syndrome<\/span><\/li>\n<li><span style=\"color: #000000;\">Down syndrome<\/span><\/li>\n<li><span style=\"color: #000000;\">Language or learning disorders<\/span><\/li>\n<li><span style=\"color: #000000;\">and others<\/span><\/li>\n<\/ul>\n<p><span style=\"color: #000000;\">You may be eligible if you:<\/span><\/p>\n<ul>\n<li><span style=\"color: #000000;\">Have a documented IDD diagnosis<\/span><\/li>\n<li><span style=\"color: #000000;\">Are currently pregnant or were pregnant in the past 10 years<\/span><\/li>\n<li><span style=\"color: #000000;\">Enrolled in Medicaid during pregnancy<\/span><\/li>\n<li><span style=\"color: #000000;\">Lived in the United States during pregnancy<\/span><\/li>\n<li><span style=\"color: #000000;\">Be 18 years of age or older<\/span><\/li>\n<li><span style=\"color: #000000;\">Speak and understand English<\/span><\/li>\n<\/ul>\n<ul><\/ul>\n<p><span style=\"color: #000000;\">If you are interested in participating or learning more, please fill out this study interest form:<\/span><br \/>\n&nbsp;<\/p>\n<div style=\"text-align: center;\">\n<span style=\"color: #0000EE; font-size: 1.3em; font-weight: bold;\"><a href=\"https:\/\/bostonu.qualtrics.com\/jfe\/form\/SV_2nlBQQr6CrHsk18\">Study Interest Form<\/a><\/span>\n<\/div>\n<p>&nbsp;<\/p>\n<hr \/>\n<p><span style=\"color: #000000;\"><\/span><\/p>\n<p><span style=\"color: #000000;\">We want to improve the experience of people with intellectual and developmental disabilities during pregnancy. To do this, we will conduct a research study using national data and conduct interviews with people with intellectual and developmental disabilities.<\/span><\/p>\n<p><span style=\"color: #000000;\">We are interested in three key factors that may influence pregnancy health outcomes for people with intellectual and developmental disabilities:<\/span><\/p>\n<p style=\"padding-left: 40px;\"><span style=\"color: #000000;\">1. <strong>Medicaid<\/strong>: The timing of when people with intellectual and developmental disabilities enroll for Medicaid may influence their pregnancy experience and access to healthcare.<\/span><\/p>\n<p style=\"padding-left: 40px;\"><span style=\"color: #000000;\">2. <strong>Prenatal care<\/strong>: It is understood that good prenatal care improves the health of parents and newborns. However, there is very little research about how prenatal care helps people with intellectual and developmental disabilities.<\/span><\/p>\n<p style=\"padding-left: 40px;\"><span style=\"color: #000000;\">3. <strong>HCBS waivers<\/strong>: Medicaid Home- and Community-Based Services (HCBS) waivers give people with intellectual and developmental disabilities the support they need to thrive in their communities. We want to know how these waivers affect prenatal care for people with intellectual and developmental disabilities.<\/span><\/p>\n<p><span style=\"color: #000000;\">People with intellectual and developmental disabilities are experts with lived experience. We will interview people with intellectual and developmental disabilities who are or were pregnant to better understand their needs, thoughts, and feelings when navigating the healthcare system.<\/span><\/p>\n<p><span style=\"color: #000000;\">Our aims are to:<\/span><\/p>\n<p style=\"padding-left: 40px;\"><span style=\"color: #000000;\">1. Evaluate pre-pregnancy Medicaid enrollment in people with intellectual and developmental disabilities and its association with unwanted\/negative pregnancy outcomes.<\/span><\/p>\n<p style=\"padding-left: 40px;\"><span style=\"color: #000000;\">2. See if when and how people with intellectual and developmental disabilities get prenatal care reduces unwanted\/negative pregnancy outcomes.<\/span><\/p>\n<p style=\"padding-left: 40px;\"><span style=\"color: #000000;\">3. Find out if HCBS waivers and related services are linked to good prenatal care and less hospitalization after birth.<\/span><\/p>\n<p style=\"padding-left: 40px;\"><span style=\"color: #000000;\">4. Ask people with intellectual and developmental disabilities about their experiences with pregnancy to better understand the legal and healthcare barriers they face.<\/span><\/p>\n<hr \/>\n<p style=\"text-align: left;\"><span style=\"color: #000000;\"><em><strong>Learn about our <a href=\"https:\/\/sites.bu.edu\/rubenstein\/promise-idd\/community-advisory-board\/\"><span>Community Advisory Board<\/span><\/a>!<\/strong><\/em><\/span><\/p>\n<p>&nbsp;<\/p>\n<ol><\/ol>\n<ol><\/ol>\n<ol><\/ol>\n<ol><\/ol>\n<ol><\/ol>\n<ul><\/ul>\n","protected":false},"excerpt":{"rendered":"<p>Policies for Reproductive Outcomes in Medicaid\u2013Improving Services for Enrollees with Intellectual and Developmental Disabilities (PROMISE IDD) Funding: Eunice Kennedy Shriver National Institute of Child Health and Human Development, 1R01HD109135-01 PI: Eric Rubenstein, PhD ScM &nbsp; If you are interested in participating or learning more, please fill out this study interest form: Study Interest Form &nbsp; [&hellip;]<\/p>\n","protected":false},"author":20589,"featured_media":0,"parent":0,"menu_order":3,"comment_status":"closed","ping_status":"closed","template":"page-templates\/no-sidebars.php","meta":[],"_links":{"self":[{"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/pages\/353"}],"collection":[{"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/users\/20589"}],"replies":[{"embeddable":true,"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/comments?post=353"}],"version-history":[{"count":53,"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/pages\/353\/revisions"}],"predecessor-version":[{"id":1579,"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/pages\/353\/revisions\/1579"}],"wp:attachment":[{"href":"https:\/\/sites.bu.edu\/rubenstein\/wp-json\/wp\/v2\/media?parent=353"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}