Funded Projects

Transition of AYA with IDD

Project Year

2022

City & State

Houston, Texas

Program Name

CATCH Planning

Topic

CSHCN/Disabilities

Program Description

The Problem: As neonatal and pediatric care improve, the number of individuals with intellectual and developmental disabilities (IDD) (e.g. cerebral palsy, Down syndrome, autism, and other congenital conditions associated with IDD) surviving into adulthood increases. However, adolescents and young adults (AYA) with IDD remain at higher risk for morbidity and mortality and are often high utilizers of health care services due to their medical and behavioral complexity. While purposeful health care transition (HCT) interventions improve their overall care and may reduce morbidity and mortality, fewer than 20% of adolescents with IDD receive comprehensive HCT services [9,10,17], with an estimated less than 5% in Houston. The AAP and GotTransition.org [8] have created widely-accepted HCT guidelines. Yet, there continue to be barriers to consistent implementation of HCT planning for AYA with IDD, and there may be condition-specific HCT nuances not adequately addressed by these broader guidelines. This project aims to identify priority HCT supports and the preferred HCT delivery model from a diverse community of AYA with IDD, their families, and their care supporters in order to design a patient-centered, culturally-competent HCT model for this population. Primary Setting We plan to evaluate current HCT services for AYA in the Houston Metropolitan Area. In 2021, Houston was ranked as the most diverse city in America [11]. 9% of Houstonians identify as having a disability [12]; 48% of Houston’s children receive Medicaid support and 16% are uninsured [14]. Thousands of adolescents with IDD of all ethnic/cultural and socioeconomic backgrounds would positively benefit from this project’s results. Number of Children Affected We will primarily recruit participants from Texas Children’s Hospital (TCH), the largest children’s hospital in the United States, and Houston community groups such as the Houston area Special Olympics and the ARCs of Houston. In the last 2 years, TCH has served 3,338 patients between the ages of 16 and 21 with IDD, cerebral palsy, Down syndrome, or autism. Project Goal This project aims to: 1. Estimate the percentage of AYA ages 16-21 with IDD in the Houston area who are receiving appropriate HCT support as outlined by the AAP and GotTransition.org. 2. Determine additional priority concerns for AYA with IDD that need to be addressed in HCT plans such as social determinants, behavior/mental health, school/community participation supports, care coordination, or other medical concerns. 3. Identify the preferred delivery model and setting for HCT planning and care coordination whether in clinic, school, community organizations, with a Medicaid/waiver coordinator or nurse care management, etc. Identifying current HCT supports and potential service gaps with our AYA with IDD community will help design patient-centered, culturally competent, community-based HCT interventions to support this vulnerable population during this critical time. Proposed Intervention Approximately 30 AYA with IDD and their families within Houston will be invited to one of 6 virtual focus groups to discuss current HCT received, additional priority HCT supports required, and the best setting in which to receive HCT services. Participants will represent a variety of IDD diagnoses and diverse backgrounds. Surveys addressing these topics will be sent to an additional 200 AYA with IDD and their families, providers and community organizations. Quantitative and qualitative analysis of the survey results and focus group data will identify areas for improvement and future targeted interventions. Anticipated Outcomes We anticipate that this project will identify priority areas to address in HCT planning for AYA with IDD. The information obtained from community advocacy groups and providers will help identify facilitators and barriers to providing HCT support. With this information, we will develop a key driver diagram and process maps to plan HCT improvements for AYA with IDD in our community.

Project Goal

Our goal is to identify current IDD-specific HCT supports from pediatrics to adult-centered medical care present in the community as well as potential HCT service gaps in our AYA with IDD community in order to help design patient-centered, culturally competent HCT interventions to support this vulnerable population during this critical transitioning time.

Project Objective 1

By April 2023, we will conduct seven focus groups to obtain qualitative data about the current HCT supports, priority HCT support needs, and preferred HCT support delivery models. Six of these focus groups will be with AYA with IDD and their families; each group will have 5-7 participants with a total of at least 5 participants with Autism, Down syndrome and cerebral palsy in the six groups. These participants will represent various racial and ethnic backgrounds; 2 will be in Spanish and the others in English. An additional focus group will be conducted with community advocacy groups who work with these individuals.

Project Objective 2

By April 2023, we will obtain at least 200 surveys regarding current HCT supports, priority HCT support needs, and preferred HCT support delivery models from AYA with IDD and their families. We will additionally obtain at least 20 needs assessments from care providers (community advocacy groups, care managers, etc) and at least 30 needs assessments from medical providers taking care of transition-age patients in the community.

Project Objective 3

By June 2023, we will summarize our findings, identify three HCT priority concerns for AYA with IDD in our community, and develop key driver diagrams and process maps to address these concerns. We will send our summary analysis and plan to our focus group participants for feedback.

AAP District

District VII

Institutional Name

Transition Medicine Clinic, Baylor College of Medicine

Contact 1

Vrunda Vithalani