Family Voices

THE FAMILY VOICES NETWORK OF FAMILY TO FAMILY HEALTH INFORMATION CENTERS

THE FAMILY VOICES NETWORK OF FAMILY TO FAMILY HEALTH INFORMATION CENTERS

PROJECTS OF NATIONAL SIGNIFICANCE: EMPOWERING YOUTH WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES TO MANAGE THEIR HEALTHCARE TRANSITIONS

PROMOTING EQUITY ACCESS TO LANGUAGE SERVICE IN HEALTH AND HUMAN SERVICES - CHILDREN AND YOUTH WITH SPECIAL HEALTH CARE NEEDS (CYSHCN) WITH LIMITED ENGLISH PROFICIENCY (LEP) OR WITH PARENTS WITH LEP ARE MORE LIKELY TO HAVE POOR HEALTH OUTCOMES THAN THEIR ENGLISH-SPEAKING COUNTERPARTS. OF THOSE IDENTIFIED AS CYSHCN, 8.2%, OR APPROXIMATELY 1 MILLION LIVE IN A HOME WHERE ENGLISH IS NOT THEIR PRIMARY LANGUAGE (GHANDOUR ET AL., 2022). CYSHCN CURRENTLY ACCOUNT FOR THE MAJORITY OF ALL PEDIATRIC MORBIDITY AND COST, AND THUS IT IS CRITICAL TO ADDRESS THE DISPARATE NEEDS OF THIS POPULATION (COHEN ET AL., 2011). BECAUSE THE VOLUME, COMPLEXITY, AND POTENTIAL CONSEQUENCES OF WRITTEN AND SPOKEN HEALTH INFORMATION ARE HIGHER FOR CYSHCN, PARENTAL LEP MAY BE STRONGLY LINKED TO SERIOUSDISPARITIESIN HEALTH OUTCOMES FOR CYSHCN (ENERIZ-WIEMER ET AL., 2014). THESE MULTIPLE FACTORS CREATE AN EXPONENTIAL RISK FOR HEALTH DISPARITIES AND ADVERSE HEALTH OUTCOMES FOR THOSE WITH THE INTERSECTIONAL IDENTITIES OF CYSHCN AND LEP. THIS PROJECT’S GOAL IS TO IMPROVE EFFECTIVENESS AND USE OF LANGUAGE ACCESS SERVICES FOR FAMILIES AND HEALTH CARE PROVIDERS (HCPS) SERVING CYSHCN, FOCUSING ON FAMILIES WITH LEP. TO ACHIEVE THIS GOAL, FAMILY VOICES AND AMERICAN ACADEMY OF PEDIATRICS WILL TAKE A COLLABORATIVE APPROACH ROOTED IN THE EXPERTISE OF FAMILIES WITH LIVED EXPERIENCE, TO DEVELOP AND DISSEMINATE EDUCATIONAL TOOLS AND STRATEGIES TO FAMILIES OF CYSHCN, COMMUNITY HEALTH WORKERS (CHWS) AND HCPS. TITLE VI OF THE CIVIL RIGHTS ACT OF 1964 OUTLAWS DISCRIMINATION BASED ON RACE, COLOR, RELIGION, SEX, OR NATIONAL ORIGIN. THIS ANTIDISCRIMINATION LAW REGARDING NATIONAL ORIGIN INCLUDES ACCESS TO LANGUAGE SERVICES. WHILE HCPS AND HEALTH SYSTEMS STRIVE TO ADHERE TO THESE FEDERAL PROTECTIONS, THEY OFTEN LACK THE NECESSARY KNOWLEDGE AND SUPPORT TO ADEQUATELY IMPLEMENT THE POLICIES SET FORTH BY GOVERNMENT AGENCIES, AND GROWING DOCUMENTATION SHOWS THE ENTRENCHED RACIAL, ETHNIC, LANGUAGE AND DISABILITY DISPARITIES IN HEALTH CARE RELATED TO LOW AVAILABILITY OF HIGH-QUALITY LANGUAGE ACCESS SERVICES. WE WILL EMPLOY THE DISPARITIES IMPACT STATEMENT FRAMEWORK TO CONDUCT AN INTERNAL AND EXTERNAL ENVIRONMENTAL SCAN AND KEY INFORMANT INTERVIEWS TO IDENTIFY APPROACHES, CRITICAL GAPS AND DISPARITIES AFFECTING ACCESS TO HIGH QUALITY LANGUAGE ACCESS SERVICES FOR CYSHCN AND THEIR FAMILIES WITH LEP. MULTIMODAL TRAININGS FOR FAMILIES, CHWS, AND HCPS ON TOPICS IDENTIFIED IN THE LITERATURE AND THE ENVIRONMENTAL SCAN WILL BE CO-DESIGNED BY FV, THE PROJECT’S ADVISORY COMMITTEE, AND AAP. FV WILL DEVELOP THESE INNOVATIVE TRAINING PROGRAMS TO INCREASE AWARENESS, UNDERSTANDING AND USE OF LANGUAGE ACCESS SERVICES FOR FAMILIES OF CYSHCN WITH LEP. THE PROJECT TEAM, INCLUDING AAP, WILL DEVELOP AND CONDUCT AN ECHO TRAINING PROGRAM FOCUSED ON INCREASING PROVIDERS’ CAPACITY TO ENGAGE APPROPRIATE LANGUAGE ACCESS SERVICES WITH FAMILIES OF CYSHCN WITH LEP, WITH EMPHASIS ON HEALTH LITERACY, HEALTH EQUITY, AND POLICY IMPLICATIONS FOR THIS POPULATION. THE ECHO WILL CONSIST OF A MULTIDISCIPLINARY HUB TEAM OF HEALTH CARE, COMMUNITY HEALTH, AND PRIMARY CARE PROVIDERS, ALONG WITH CYSHCN AND THEIR FAMILIES. THE EVALUATION OF OUTCOMES WILL EXAMINE THE EXTENT TO WHICH PROJECT ACTIVITIES RESULTED IN THE INTENDED OUTCOMES OF INCREASED ACCESS TO SERVICES, UNDERSTANDING OF RIGHTS AND RESPONSIBILITIES FOR INTERPRETATION SERVICES, UNDERSTANDING OF PROVIDER RECOMMENDATIONS, AND SAFETY AND HEALTH OUTCOMES OF FAMILIES OF CYSHCN WITH LEP.

FAMILY PROFESSIONAL PARTNERSHIP/CSHCN

TELEHEALTH FOR FAMILY ENGAGEMENT

FAMILY PROFESSIONAL PARTNERSHIP/CSHCN

FAMILY PROFESSIONAL PARTNERSHIP/CSHCN

FAMILY PROFESSIONAL PARTNERSHIP/CSHCN

FAMILY PROFESSIONAL PARTNERSHIP/CSHCN

FAMILY PROFESSIONAL PARTNERSHIP/CSHCN

ALLIANCE FOR INFORMATION ON MATERNAL AND CHILD HEALTH PROGRAM

FAMILY PROFESSIONAL PARTNERSHIP/CSHCN

FAMILY PROFESSIONAL PARTNERSHIP/CSHCN

PARTNERSHIPS TO PROMOTE MATERNAL AND CHILD HEALTH

FAMILY PROFESSIONAL PARTNERSHIP/CSHCN - PROJECT TITLE: FAMILY-TO-FAMILY HEALTH INFORMATION CENTER (F2F) APPLICANT: FAMILY VOICES COLORADO (FVCO) ADDRESS: 6700 W DORADO DRIVE UNIT 16, LITTLETON, COLORADO 80123 PROJECT DIRECTOR: CHRISTY BLAKELY CONTACT PHONE: (303) 726-2065 EMAIL: CHRISTY@FAMILYVOICESCO.ORG WEBSITE: HTTPS://FAMILYVOICESCO.ORG/ GRANT PROGRAM FUNDS REQUESTED: HRSA-22-069 ($96,750 PER YEAR) PROBLEM: NEARLY A QUARTER OF A MILLION CYSHCN, AGES 0 TO 18 YEARS, RESIDE IN THE STATE OF COLORADO—ROUGHLY ONE IN FIVE OF ALL COLORADAN CHILDREN. FAMILIES NEED MORE SUPPORT TO KNOW WHERE TO BEGIN AND HOW TO COPE WITH OBSTACLES; TO CONNECT WITH THE BEST PROVIDERS AND PARENT NETWORKS EARLY AND AT THE RIGHT TIME; TO UNDERSTAND HOW TO APPLY AND REQUIREMENTS FOR SERVICES AND COVERAGE; AND TO USE DATA AND ADVOCACY TO DRIVE SYSTEMS CHANGE. THE COLORADO POPULATION IS GROWING, WITH NEARLY A MILLION NEW RESIDENTS IN THE LAST 10 YEARS, AND TODAY THERE ARE MORE DIVERSE FAMILIES OF CYSHCN—WITH DIFFERENT CULTURAL, RACE, ETHNIC, AND LINGUISTIC BACKGROUNDS, EXPERIENCES, AND NEEDS. THERE IS AN IMPERATIVE FOR CULTURALLY AND LINGUISTICALLY APPROPRIATE INFORMATION AND RESOURCES TO BETTER SERVE FAMILIES. GOALS AND OBJECTIVES: ALL OBJECTIVES OF THE F2F PROJECT WILL BE ACCOMPLISHED BY MAY 2027. 1) TO INCREASE ACCESS TO INFORMATION, EDUCATION, AND TRAINING. 10% (MIN.) INCREASE IN FAMILIES AND PROFESSIONALS ASSISTED. 10% INCREASE IN TRAINING PARTICIPANTS WHO GAIN CYSHCN KNOWLEDGE. 85% OF FAMILIES REPORT F2F MET THEIR NEEDS, BETTER PREPARED THEM FOR COLLABORATION AND SHARED DECISION MAKING. HAVE ONE ANNUAL VISIT TO LEGISLATORS AND THE CAPITAL. 2) TO STRENGTHEN FAMILY-PROFESSIONAL PARTNERSHIPS AND STRIVE FOR EQUITY IN ACCESS AND OUTCOMES. HAVE FOUR MEETINGS ANNUALLY OF THE FAMILY-LED COALITION. HAVE FOUR REVIEWS OF OMB PERFORMANCE MEASURES ANNUALLY. 10% INCREASE IN NUMBER AND TYPE OF PROGRAMS ASSISTED BY F2F. 3) TO INCREASE CULTURALLY COMPETENT OUTREACH. HAVE FOUR MEETINGS ANNUALLY OF THE DIVERSITY ADVISORY BO ARD. 20% INCREASE IN UNDERSERVED FAMILIES TRAINED BY F2F TO PARTNER IN DECISION MAKING. 30% INCREASE IN CULTURALLY COMPETENT MATERIALS AND INFORMATION PROVIDED BY F2F. METHODOLOGY: IN RESPONSE TO UNMET NEEDS, FVCO, A GRASSROOTS NONPROFIT ORGANIZATION RUN BY PARENTS OF CYSHCN, PROVIDES VITALLY-NEEDED INFORMATION, SUPPORT, NAVIGATION, TRAINING, AND ADVOCACY FOR FAMILIES OF CYSHCN. THE PROPOSED F2F PROJECT AT FVCO WILL DEVELOP NEW INFORMATIONAL RESOURCES, EVALUATE THE IMPACT OF ITS ACTIVITIES, INCREASE FAMILY-LED ADVOCACY AND POLICY, ADVANCE MULTI-SECTOR COLLABORATION, AND INCREASE REPRESENTATION FROM CULTURALLY DIVERSE COMMUNITIES. BY MAY 2027, THE F2F PROJECT WILL, ANNUALLY, ASSIST 1,500 INDIVIDUALS, OUTREACH AT 30-40 PRESENTATIONS AND TRAININGS AND REACH 500+ ATTENDEES, AND REACH 5,000+ FAMILIES THROUGH SOCIAL MEDIA. COORDINATION: FVCO COLLABORATES WITH OVER 20 PARTNERS ACROSS COLORADO AND ACCOMPLISHES ITS WORK IN THE LANGUAGES AND MEANS THAT BEST SERVE FAMILIES, PARTICULARLY IMPORTANT TO MANY SPANISH-SPEAKING FAMILIES. F2F WILL ESTABLISH TWO NEW, CRITICALLY-NEEDED COLLABORATIVE GROUPS: A FAMILY-LED COALITION AND DIVERSITY ADVISORY BOARD. THESE GROUPS WILL ENSURE CONCERNS OF FAMILIES, INCLUDING DIVERSE AND UNDERSERVED FAMILIES, AND SERVICE GAPS INFORM ADVOCACY AND ARE UTILIZED TO DRIVE REAL POLICY CHANGE. EVALUATION: F2F STAFF WILL CONDUCT AN EVALUATION TO ASSESS ALL ACTIVITIES AND TOOLS. ALL F2F INTERACTIONS WILL BE TRACKED THROUGH AN INTAKE FORM AND ENTERED IN A HIPAA COMPLIANT DATABASE. PRESENTATIONS WILL BE TRACKED USING AN OUTREACH FORM. FAMILIES AND PROFESSIONALS WILL COMPLETE SATISFACTION SURVEYS TO MEASURE THE IMPACT OF THE PROJECT’S SERVICES. KEY PERFORMANCE MEASURE DATA WILL BE COLLECTED QUARTERLY AND MONITORED FOR PROJECT PROGRESS AND PERFORMANCE IMPROVEMENT. POPULATION GROUPS: F2F WILL BENEFIT ALL CYSHCN AND THEIR FAMILIES LIVING IN COLORADO: URBAN, RURAL, AND UNDERSERVED.

FAMILY PROFESSIONAL PARTNERSHIP/CSHCN

INTEGRATED COMMUNITY SYSTEMS FOR CSHCN

FAMILY PROFESSIONAL PARTNERSHIP/CSHCN

FAMILY PROFESSIONAL PARTNERSHIP/CSHCN

DELAWARE FAMILY VOICES, INC. STATEWIDE FAMILY NETWORK PROGRAM