F5 - Prioritizing Youth & Family-Professional Partnerships in Creating a Statewide Title V Health Transition Toolkit for Youth and Young Adults with Special Health Needs

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Full Description:

Background: According to the 2019-2020 National Survey of Children’s Health, only 26.3% of youth with special health needs (aged 12-17) in Massachusetts reported receiving the services necessary to make transitions to appropriate adult health care, work and independence. In response, the Title V Division of Children and Youth with Special Health Needs (DCYSHN) at the Massachusetts Department of Public Health prioritized the creation of a toolkit to assist youth and young adults with special health needs (YYASHN) in completing a successful health transition. This project supported Massachusetts’ Title V state action plan to increase the annual percent of youth with special health needs who have received services necessary to transition to adult health care within National Performance Measure 12 (NPM 12). In partnership with two graduate interns from the National Title V MCH Internship Program, the first draft of the Health Transition Toolkit was developed during Summer 2021.

Relevance: The first draft of the YYASHN Health Transition Toolkit includes a comprehensive guide of tools and community resources within these core topics: Health Care, Public Benefits, Self-Management & Personal Health, Caregiver & Family Wellbeing, Guardianship, Community Support, and Advocacy. This toolkit brings DCYSHN a step closer to having a statewide resource, strengthening the relationship between local and state level YYASHN programs and the youth and families they serve. This work cannot be done without acknowledging past and current inequities that have resulted from many health care structures being built without YYASHN in mind. The toolkit addresses the need for equitable, holistic information for YYASHN and their families that supports self-management of one’s health in addition to the transition from pediatric to adult health care. In looking to shape the future of YYASHN in Massachusetts, this project is informed by the mantra of ‘Nothing About Us Without Us’ by involving youth and family voices in the planning and development of the toolkit as experts in this field, elevating this interprofessional collaboration. Future plans for the toolkit include the development of holistic personal health content (such as sexual and reproductive health and mental health) using universal design.

Workshop Content: This workshop will describe the development of the YYASHN Health Transition Toolkit. We will highlight the Massachusetts Family Engagement Framework, which guided us in our youth and family-professional partnerships during the project, and describe the process of meeting with our youth and family advisors to determine relatability, accessibility and acceptability of the toolkit. In our guided workshop discussion, we will have small groups reflect about experiences engaging youth and family stakeholders within their respective contexts. We will conclude with hearing experiences of youth advisors involved in creating the first draft of the toolkit.

Abbreviated Description: This workshop will focus on the process of prioritizing youth and family engagement in the development of a statewide Health Transition Toolkit for Youth and Young Adults with Special Health Needs (YYASHN), done in partnership with Title V MCH interns and the Division for Children and Youth with Special Health Needs (DCYSHN) at the Massachusetts Department of Public Health (MDPH). This workshop will feature a description of the methods used to create the first draft of the toolkit as well as plans to incorporate holistic content and universal design. This will be followed by guided small group discussions about prioritizing youth and family involvement in MCH initiatives. We will conclude with hearing experiences of youth advisors involved in creating the first draft of the toolkit.