Research

This five-year exploratory, mixed-methods research study focuses on supporting families of people with disabilities. The project aims to identify factors enabling individuals with disabilities and their aging family caregivers to thrive. Unlike many studies that focus on the challenges and burdens of caregiving, this research explores the strengths, strategies and supports that help families not only survive but thrive.

The study will be conducted in three phases, beginning with a national survey of family caregivers and continuing with qualitative focus groups, interviews, and a photovoice/diary study of family dyads. By integrating quantitative and qualitative data, the project offers a comprehensive understanding of how families can be supported to achieve positive outcomes across their lifespan.

Key research questions include:

1. What helps people with disabilities who receive care from their aging families to thrive?
2. What enables aging families to support individuals with disabilities?
3. What supports aging families to thrive now and in the future?

Ultimately, the findings will inform recommendations for policies and practices to support families of individuals with disabilities better.

Investigators:

• Sumithra Murthy, Principal Investigator
• Abby Schindler, Co-Investigator
• Jae Jin Pak, Co-Investigator
• Hope Sparks, Student Research Assistant

This research project focuses on enhancing future planning for families of adults with intellectual and developmental disabilities (IDD). Research shows that many families need help to create concrete plans, especially concerning living arrangements, finances, decision-making supports and vocational preferences. Challenges include mistrust of service systems, legal costs and emotional difficulties in discussing mortality.

To address this, the evidence-based intervention “The Future Is Now” (FIN) was developed to guide families through future planning while involving adults with IDD in the process. Initially delivered in person, this program has shown success in increasing family action steps and reducing caregiver burden.

The project is now expanding through a virtual version (V-FIN), which includes online sessions, peer support, and a train-the-trainer (TTT) model to reach more families and professionals nationally. V-FIN provides weekly 1.5-hour sessions over six weeks, offering resources, tools and peer-to-peer support.

Through this scale-up, the project aims to equip families and caregivers with the tools to make comprehensive plans, supporting self-determination for individuals with IDD and healthy aging.

Investigators:

• Tamar Heller, Principal Investigator
• Timotheus “T.J.” Gordon, Jr., Co-Investigator
• Piyush Mishra, Student Research Assistant
• Randa Abdelrahim, Co-Investigator

This health promotion initiative is designed to support older family caregivers of adults with intellectual and developmental disabilities (IDD). It focuses on addressing both the physical and mental health needs of caregivers.

Caregivers of individuals with IDD face unique, long-term challenges, such as maintaining their health while caring for family members. This demographic often struggles with chronic conditions like arthritis, heart disease and diabetes, and experiences higher stress and mental health concerns. The WAVE program, driven by Social Cognitive Theory, aims to improve caregivers’ physical activity, fitness and psychosocial well-being through virtual education, self-monitoring and social support interventions.

Key components:

1. Education & training: Caregivers will receive virtual sessions on physical activity, stress management and advocacy.
2. Self-monitoring: Participants will use Fitbit devices to track physical activity and receive feedback through the iCardia platform, encouraging accountability.
3. Social support: Caregivers will engage in peer-based support groups, facilitated through a private Fitbit community, to foster motivation and adherence to physical activity goals.

The program will test its intervention efficacy through a randomized controlled trial. The trial includes a 12-week intervention period and a two-month post-intervention follow-up to assess long-term adherence. Participants will be divided into two groups: one receiving virtual education and mobile health interventions (Fitbit, text messages, peer support) and a control group receiving only virtual education.

The study aims to:

1. Develop and refine a virtual and mobile health intervention protocol.
2. Improve physical activity, fitness, and well-being in caregivers.
3. Explore the long-term adherence and impact of the WAVE intervention.

WAVE seeks to empower caregivers to improve their health and reduce caregiving-related burdens by integrating technology, social support and personalized feedback. The project also places a special emphasis on recruiting diverse participants, including caregivers from underserved communities.

Investigators:

• Kelly Hsieh, Principal Investigator
• Tanvi S. Bhatt, Co-Investigator
• Spyros Kitsiou, Co-Investigator

This project explores key gaps in knowledge regarding family caregivers of individuals with disabilities. Using three national datasets, the Behavioral Risk Factors Surveillance System (BRFSS), Medicaid Transformed Statistical Information System (T-MSIS) and National Core Indicators – Intellectual and Developmental Disabilities (NCI-IDD) Family Surveys, the study focuses on the health, well-being and support experiences of underserved caregiver subpopulations.

The research is divided into three primary analyses:

1. Caregiver Health and Well-being (BRFSS Data): This analysis examines caregiving profiles and health outcomes of diverse caregivers by leveraging BRFSS data, which includes information on caregivers’ demographics, caregiving characteristics and health-related behaviors.
2. Access and Utilization of Respite Services in Medicaid HCBS Programs (T-MSIS Data): The project investigates who receives respite services, how much they receive and any disparities based on demographics or disability status.
3. Service Experiences of Families of Adults with IDD (NCI-IDD Family Surveys): This component examines the quality of services provided to families and its impact on unmet needs and community living outcomes for adults with intellectual and developmental disabilities (IDD).

The findings will inform policymakers and disability advocates, contributing to developing more inclusive and equitable family support policies.

Investigators:

• Joe Caldwell, Principal Investigator
• Ilhom Akobirshoev, Co-Investigator
• Laurin Bixby, Co-Investigator
• Teresa Nguyen, Co-Investigator

This project seeks to improve family support policies at the state and federal levels by developing specific, evidence-informed recommendations. It will address broad strategies identified in the RAISE National Family Caregiver Strategy, such as improving national data collection, family caregiver assessments, and enhancing culturally competent services.

Through workgroups composed of policy experts, family caregivers and individuals with disabilities, the project will analyze four key policy issues:

1. Improving National Data on Family Support: Developing recommendations to enhance data collection on family caregivers in national surveys.
2. Promoting Family Caregiver Assessments within Medicaid HCBS Programs: Encouraging the adoption of caregiver assessments to support family caregivers and care recipients better.
3. Enhancing Opportunities for Self-Direction and Payment of Family Caregivers: Exploring ways to expand self-directed services and pay family caregivers within Medicaid HCBS programs.
4. Removing Barriers to Family Support in Underserved Communities: Identifying solutions to improve access to family support services for underserved  caregivers.

Workgroup findings will inform policy briefs and recommendations to guide advocates and policymakers in advancing family support policy.

Investigators:

• Sydney “Syd” Pickern, Principal Investigator
• Jennifer Lee-Rambharose, Co-Investigator
• Joe Caldwell, Co-Investigator