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TRANSITION FOR YOUTH WITH AUTISM AND/OR EPILEPSY DEMONSTRATION PROJECTS - A COMMUNITY-CENTERED, STRATEGIC APPROACH FOR ENHANCING THE WELLBEING OF YOUTH WITH EPILEPSY AND DEVELOPMENTAL DISABILITIES AND THEIR CAREGIVERS DURING THE TRANSITION TO ADULT-SERVING SYSTEMS. BOSTON MEDICAL CENTER PEDIATRIC RESEARCH BUILDING, 801 ALBANY ST, ROXBURY, MA 02119-3791 LAURIE M DOUGLASS, MD; 617-899-1025 (CELL); 617-414-4590 (OFFICE); 617-414-4841 (FAX) EMAIL: LAURIE.DOUGLASS@BMC.ORG WEBSITE: HTTPS://WWW.BMC.ORG/PEDIATRICS-NEUROLOGY PROGRAM FUNDS REQUEST: $2,248,780 BOSTON MEDICAL CENTER'S PROJECT, A COMMUNITY-CENTERED, STRATEGIC APPROACH FOR ENHANCING THE WELLBEING OF YOUTH WITH EPILEPSY AND DEVELOPMENTAL DISABILITIES AND THEIR CAREGIVERS DURING THE TRANSITION TO ADULT-SERVING SYSTEMS, WILL DEVELOP, IMPLEMENT, EVALUATE, AND SCALE UP FIVE INNOVATIVE STRATEGIES THAT WILL BROADLY IMPROVE OUTCOMES FOR YOUTH WITH EPILEPSY (YWE) AS THEY TRANSITION FROM CHILD- TO ADULT-SERVING SYSTEMS. BOSTON MEDICAL CENTER (BMC) AND THE EPILEPSY FOUNDATION NEW ENGLAND (EFNE) ARE UNIQUELY POSITIONED TO MOBILIZE A CROSS-DISCIPLINARY NETWORK IN ORDER TO SUPPORT 9,066 YWE BETWEEN 13 AND 26 YEARS OF AGE AND THEIR FAMILIES WHO LIVE IN FIVE NEW ENGLAND STATES (MASSACHUSETTS, NEW HAMPSHIRE, MAINE, RHODE ISLAND, AND VERMONT). THE PROPOSED CONSORTIUM WOULD PRIORITIZE THE NEEDS OF AN ESTIMATED 4,502 YWE WHO HAVE A CO-OCCURRING DIAGNOSIS OF AUTISM SPECTRUM DISORDER (ASD), INTELLECTUAL/DEVELOPMENTAL DISABILITY (IDD), OR BOTH WITHIN THE PROJECT CATCHMENT AREA, HEREAFTER REFERRED TO AS YEDD. SINCE 2016, BMC'S TELEHEALTH EPILEPSY CARE COLLABORATIVE (TECC) HAS ENABLED OVER 3,000 UNIQUE YWE TO OVERCOME BARRIERS AND ACCESS HOLISTIC SPECIALTY CARE THROUGH ITS HRSA-FUNDED INITIATIVES. AS COLLABORATORS UNDER TECC, BOTH BMC AND THE EFNE HAVE ACCUMULATED THE INSTITUTIONAL CAPACITY, EXPERTISE, AND COMMUNITY CONNECTIONS NEEDED TO OVERCOME REMAINING BARRIERS IN OUR CATCHMENT AREA. WE USED EXTENSIVE INTERVIEW, FOCUS GROUP, AND SURVEY DATA PROVIDED BY YWE, THEIR SUPPORTERS AND SER VICE PROVIDERS OVER THE PAST TWO YEARS TO INFORM THIS PROPOSAL. WE WILL CONTINUE TO ENGAGE YWE/YEDD AND THEIR CAREGIVERS AT EVERY STAGE OF EVERY INNOVATIVE STRATEGY, AND PRIORITIZE THE PURSUIT OF TOTAL HEALTH EQUITY. OVER THE NEXT FIVE YEARS, THIS PROJECT WILL ADDRESS ALL THREE HRSA-24-042 OBJECTIVES BY IMPROVING UPON TRANSITION SUPPORT CAPACITY DEVELOPED THROUGH PREVIOUS CYCLES OF HRSA FUNDING. EACH PROPOSED STRATEGY WILL INCORPORATE IMPLEMENTATION SCIENCE, CONTINUOUS QUALITY IMPROVEMENT (QI), HEALTHCARE TRANSITION FRAMEWORKS AND CORE PRINCIPLES FROM THE HRSA/MCHB BLUEPRINT FOR CHANGE. SPECIFIC AREAS OF INNOVATIONS UNDER THIS PROJECT WILL INCLUDE: A NOVEL APPROACH TO SCREENING YWE/YEDD FOR OVERALL TRANSITION READINESS, THE EXPANSION OF TWO TRANSITION NAVIGATION PROGRAMS THAT SERVE PATIENTS AND FAMILIES AT ZERO COST, A NEW COACHING PROGRAM FOR CAREGIVERS, AND THE CREATION OF SEVERAL NEW TARGETED EDUCATION, ADVOCACY, AND SOCIAL GROUPS THAT RESPOND SPECIFICALLY TO THE NEEDS OF YEDD AND THEIR FAMILIES. WITH THE HELP OF A LARGE, CROSS-DISCIPLINARY PARTNERS NETWORK AND ADVISORY COUNCIL MEMBERS WITH DIVERSE LIVED EXPERIENCE, WE WILL ALSO GENERATE REGIONAL KNOWLEDGE, PERFORM A SOPHISTICATED NEED AND NETWORK ANALYSIS, DEVELOP A VIRTUAL RESOURCE HUB FOR YEDD/CAREGIVERS, AND STRENGTHEN CROSS-AGENCY COLLABORATION FOR VARIOUS YEDD-SERVING COMMUNITY GROUPS. PROJECT SUCCESS WILL BE EVALUATED THROUGH A MIXED METHODS APPROACH THAT INCORPORATES QUANTITATIVE AND QUALITATIVE DATA COLLECTION METHODS. LONGITUDINAL DATA COLLECTED ACROSS THE ENTIRE PROJECT PERIOD WILL BE USED TO ESTIMATE THE CONSORTIUM'S EFFORTS IMPACT ON HEALTH EQUITY, COMMUNITY CONNECTIVITY PATTERNS, THE NUMBER OF UNIQUE YEDD WHO SUCCESSFULLY TRANSFER INTO ADULT-ORIENTED SERVICES OVER TIME, THE BROAD ADOPTION OF SUPPORTED DECISION MAKING STRATEGIES, AND THE GENERAL WELLNESS AND PERCEIVED SELF-EFFICACY SCORES REPORTED BY CAREGIVERS.
$449.8k 7/5/24