Project Description:
Project Title: Promoting health equity: Establishing a comprehensive, bilingual training program for individuals with developmental disabilities and their caregivers/parents
This is a multidisciplinary, cross-institutional collaborative project led by both a health education faculty (Dr. Lei-Shih Chen) at the Transdisciplinary Center for Health Equity Research, and a special education faculty (Dr. Marcia L. Montague) at the Center on Disability and Development (CDD) at Texas A&M University. Both Drs. Chen and Montague are mothers and caregivers of children with disabilities. The goal of this project is to develop, implement, and evaluate a comprehensive, evidence-based, theory-grounded bilingual (English and Spanish) training program focusing on health equity among people with developmental disabilities (DD) and their caregivers/parents in the Brazos Valley (BV) region of Texas. The BV region of Texas is a medically underserved area with high poverty rates, especially for people and families with DD members, located in central Texas. It is comprised of one sub-rural (Brazos) and six rural counties (Burleson, Grimes, Leon, Madison, Robertson, and Washington). Through participating in this training program, people with DD and their caregivers/parents will: (1) increase their use of available community, state, and federal resources, (2) improve their practice of parent rights and evaluate their healthcare providers, and (3) strength advocacy actions for themselves when confronted with healthcare providers who are unfamiliar with DD or dismissive of their concerns. Their knowledge, attitudes, intention, and self-efficacy associated with such behaviors will also be enhanced. Ultimately, our training program will empower people with DD and their caregivers/parents to achieve improved access to and effectiveness of treatment and supports, with emphasis on person-centered planning.
Goals: The main goal of the project is to develop, implement, and evaluate a comprehensive,
evidence-based, theory-grounded bilingual (English and Spanish) training and support program focusing on improving healthcare equity among people with DD and their caregivers/parents in the BV region of Texas. Specific goals for the proposed project are listed below:
Goal 1. Develop and pilot test a comprehensive, evidence-based, theory-grounded bilingual (English and Spanish) training course focused on the promotion of health equity for persons with DD and their caregivers/parents in the BV region of Texas. (YEAR 1: September 1st, 2022- August 31st, 2023).
Goal 2. Implement, evaluate, and finalize the training course developed in Goal 1 with 624 individuals with DD and their caregivers/parents in the BV region of Texas. (YEARS 2-5: September 1st, 2023-August 31st, 2027).
Goal 3. Develop a resource-rich bilingual (English and Spanish) website for people with DD and their caregivers/parents (YEAR 1: September 1st, 2022- August 31st, 2023).
During Year 1 of the grant, with an approved extension, the following training courses have been fully developed and pilot-tested:
1. Finding, Choosing, and Evaluating Mental Health Professionals (in both English and Spanish)
2. Finding, Choosing, and Evaluating Primary Care Physicians for Adults with Developmental Disabilities (in English)
3. Finding, Choosing, and Evaluating General Pediatricians (in English)
4. Finding, Choosing, and Evaluating Early Childhood Intervention (in English)
5. Finding, Choosing, and Evaluating Obstetricians/Gynecologists (OB/GYNs; in English)
Training currently in pilot testing:
1. Finding, Choosing, and Evaluating Primary Care Physicians for Adults with Developmental Disabilities (in Spanish)
2. Finding, Choosing, and Evaluating General Pediatricians (in Spanish)
3. Finding, Choosing, and Evaluating Early Childhood Intervention (in Spanish)
4. Finding, Choosing, and Evaluating Dentists (in both English and Spanish)
5. Finding, Choosing, and Evaluating Eye Doctors (in English)
Training in final stages of development:
1. Finding, Choosing, and Evaluating Eye Doctors (in Spanish)
2. Finding, Choosing, and Evaluating Obstetricians/Gynecologists (OB/GYNs; in Spanish)
3. Health Insurance and Texas Medicaid Waiver Programs for Individuals with Developmental Disabilities (in English and Spanish)
4. Finding, Choosing, and Evaluating Individualized Education Programs (IEP)/Admission, Review and Dismissal (ARD; in English and Spanish)
5. Patients' Rights, Advocacy, and Communication (in English and Spanish)
Each training has handouts, a list of local resources, accessible recordings and videos, and pre/post/and 6-month follow-up surveys. In addition, a website has been developed that will direct prospective participants to the training portal.
