Balancing Autonomy, Dignity, and Risk in Home-Based Care for Aging Veterans and Adults with I/DD

Balancing Autonomy, Dignity, and Risk Better Than Facility-Based Care

Households caring for both aging veterans and adults with intellectual and developmental disabilities face unique challenges that require specialized approaches. This article presents two evidence-based strategies that help families balance independence, respect, and safety while avoiding institutional placement. These recommendations come from experts who have worked directly with families managing these complex care situations.

In This Article

• Use Family Team Meetings for Choice and Safety
• Adopt Participant-Directed Care with Flexible Supports

Use Family Team Meetings for Choice and Safety

One tried and tested way to make a real difference is to hold regular family and care team meetings that use a straightforward approach of shared decision-making and simple communication.

I've done this kind of thing before in previous work, convening family meetings, encouraging people to share their thoughts with "I feel" statements, and keeping a close eye out for potential conflicts to make sure we always stayed focused on what's best for the client.

When teams of Veterans and people with IDD are living together, this way of doing things results in a single care plan that outlines each person's goals, the routines they prefer, the roles they like to take on, and what to do in case things get tough.

In contrast to care in a facility, this approach lets people keep their independence and dignity intact; each person gets a proper say in what's happening in their own home, rather than having decisions made for them.

It also does a good job of managing risk by setting clear rules, spotting potential tensions early on, and scheduling regular reviews so we can make any necessary changes before they start to disrupt daily life.

Contributor: Nikita Sherbina
Title: Co-Founder & CEO
Organization: AIScreen Digital Signage Software

Adopt Participant-Directed Care with Flexible Supports

Research on home- and community-based services (HCBS) shows that this type of care keeps people independent and respected, while managing risks better than traditional institutional care. HCBS focuses on person-centered planning, letting people direct their own care, and flexible support that adapts to their needs.

(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11618263/)

A key approach is participant-directed care, such as Veteran-Directed Home and Community Based Services (VD-HCBS). In this model, people who might otherwise need to go into a facility design their own care plans, choose and manage services, and adjust resources for their needs. Early studies show this helps veterans stay at home longer, increases satisfaction, and aligns care with their preferences.

For adults with intellectual or developmental disabilities, research highlights co-created care plans, where goals, activities, and supports are made together with the person and their caregivers. This improves engagement, respects personal goals, and supports meaningful daily life.

Across all groups with complex needs, effective care models include three main parts:

1. Person-centered planning – care is built around the individual's goals and preferences.
2. Flexible supports – the type and amount of help can change as needs change.
3. Ongoing risk management – regular monitoring and feedback help prevent problems while keeping people in control.

Compared with traditional institutional care, this strategy:

• Supports living in familiar environments and keeps personal choice.
• Encourages self-direction and autonomy through individualized decisions.
• Reduces risks of institutions, like loss of control, social isolation, and lower dignity. Research shows people with intellectual disabilities face higher rates of neglect in institutions, highlighting the need for community-based alternatives.

Contributor: Karmela Rafael
Title: Senior Care Specialist
Organization: Be Well Medical Alert

Closing Statement from the Editor

As a provider working directly with Veterans and adults with intellectual and developmental disabilities, I see daily how shared decision-making and participant-directed care can change outcomes in real homes, not just on paper. These strategies are not theoretical. They are practical, respectful approaches that help people maintain dignity, autonomy, and stability while avoiding unnecessary institutional placement. When families and care teams commit to these principles, home- and community-based care becomes not only safer, but more sustainable for everyone involved.

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Editorial note

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