Caregiver Engagement: 3 Key Takeaways from the IDD Leadership Summit

Engaging caregivers and parents in supporting individuals with intellectual and developmental disabilities (IDD) is an incredible opportunity but can be challenging. At the 2nd annual IDD Leadership Summit, our panel of industry experts explored strategies to empower caregivers, break down barriers and leverage technology for better outcomes. Let’s unpack the top three insights shared during the discussion.

Panel participants:

• Audrey Campbell, BCBA, Solution Consultant at Rethink Behavioral Health
• Kathleen Sammer, BCBA, Senior Clinical Director of Behavior Supports and Assessments, Access Services
• Jen Gray, Director of Solution Consulting, Netsmart

1. Caregiver Involvement Drives Better Outcomes

Research and experience agree that when caregivers are involved in support and care, outcomes improve significantly. The panel highlighted two huge benefits of caregiver participation.

• Faster Progress and Sustained Improvements: Skills taught are more likely to generalize to home, school and community settings when caregivers actively participate. Kathleen Sammer, BCBA, Senior Clinical Director of Behavior Supports and Assessments, Access Services and special needs parent, shared how her son’s success depended on learning from the professionals in their home. “Without their guidance,” she explained, “we could have stalled and gotten stuck in behavior cycles.”
• Empowered Caregivers Lead to Empowered Individuals: Caregivers who are trained and involved feel more confident, creating a ripple effect of consistency and support. This empowerment not only helps the individual but also reduces stress for caregivers, improving overall family dynamics.

2. Barriers Persist—but Can Be Overcome

Caregiving for individuals with IDD is rewarding but understandably demanding. The panelists addressed several barriers to caregiver engagement.

• Time Constraints: Caregiving often feels like a part-time job on top of everything else. From frequent coordinating with schools to managing recurring medical appointments, caregivers' time and energy are stretched thin. A portal enabling caregivers and the organization to communicate and share how to's, video resources and telehealth sessions were discussed as ways to reduce the burden. Also emphasized, realistic goal setting.
• Stress and Mental Health: The panel shared that the cortisol levels of caregivers can rival those of combat soldiers. This stress is compounded by feelings of isolation, grief cycles and the complexity of navigating care systems. Providers can help by simplifying processes, offering consistent communication and creating space to celebrate small victories.
• Knowledge Gaps: Teachers, close family and community members often lack the training needed to effectively support individuals with IDD. Educating caregivers and staff with clear, accessible guidance builds stronger support networks and encourages collaboration.

3. Technology as a Game-Changer

Innovative technology has the potential to bridge gaps in communication, education, and engagement. Audrey Campbell, M.A., BCBA at Rethink shared several ways their platform supports caregivers and providers.

• Training and Resources: Access to video models, step by step tutorials on behavior support plans and Applied Behavior Analysis (ABA) help caregivers learn and apply techniques in real-time.
• Communication and Data Transparency: With access to individual progress reports and preference assessments, caregivers can see the impact of their involvement, which motivates continued engagement.
• Streamlined Processes: Features like digital filing cabinets and health assessments reduce administrative burdens, saving valuable time for caregivers and providers alike.

Technology not only simplifies workflows but also has the power to strengthen caregiver confidence by making success more visible and accessible every day.

The Power of Partnership

The discussion closed with a key reminder: Caregiving is not a one-size-fits-all journey. Whether the focus is on children with IDD or autism or adults in group homes, collaboration between caregivers, clinicians and organizations is vital. As Jen Gray, Director of Solution Consulting, put it, “There’s power in the pause”—taking time to reflect, celebrate, and adjust ensures a sustainable, impactful approach to caregiving. By addressing barriers, embracing practical solutions, and leveraging technology, healthcare providers can better support caregivers—transforming lives, one connection at a time.