By Johnny Payne MS BCBA

The work of supporting individuals with co-occurring intellectual/developmental disabilities and mental health challenges (IDD/MH) is, at its core, deeply human work. In this pursuit, the truth of vulnerability as a shared connection across humanity is undeniably and beautifully revealed. Yet, the dedicated caregivers in this field face a landscape of overwhelming stress and systemic challenges that can lead to burnout.

To explore this topic, I spoke with Lara Palay, LISW-S, and Kevin Aldridge, MA, two seasoned authors and consultants who have dedicated their careers to improving the IDD/MH support system. Their unique partnership, which combines clinical expertise with organizational strategy, is exemplified in their recently published books, The Way Through and The Way Forward, respectively. Our conversation about their work provides a holistic view of the issue.

Lara, a clinical social worker since 1988, has built her practice around the concepts of trauma and traumatic grief. She brings the crucial perspective that caring for oneself is not separate from caring for others. "I don't want to experience harm any more than I want my clients to have experienced harm," she states. "So, for me, it's a natural progression from taking care of people to really, deeply and practically valuing your own well-being as well."

Kevin’s career has taken him through direct service, agency management, and high-level policy work within the developmental disabilities system. He is fascinated by the fundamental question of how groups of people get work done effectively and what happens when leaders try to scale ideas only to find them fall apart in the process.

Part 1: Framing the Problem – The Emotional Landscape of Frontline Work

Before we can explore solutions, we must first understand the immense pressure faced by those on the front lines. The term “caregiver” encompasses a wide range of individuals, from paid Direct Support Professionals (DSPs) to unpaid family members. While their roles differ, they share a common emotional landscape defined by profound, chronic stress. In fact, as I noted in a previous article I wrote, research from the University of Wisconsin found that mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers. For this discussion, we will focus on the experiences of paid caregivers, but the concepts apply to familial or natural caregivers as well.

At the heart of this challenge is the intense, relational nature of the work. Lara identifies emotional contagion as a primary source of the daily toll. "When we are with someone that we care about... and they are dysregulated," she explains, "unless we have built the right skills... we tend to go along for the ride with them, and that is the mechanism of the emotional wear and tear." The core of the issue is being connected with people who are often dysregulated, and in turn, we get dysregulated with them.

This emotional demand is compounded by a system that often fails to recognize the complexity of the work. Kevin points out that our support systems frequently treat caregiving as "just natural things that anybody can do." This lack of support contributes to a culture of confusion and fear where caregivers feel like they are "walking on eggshells," especially DSPs working to fulfill unclear performance expectations from their employers. Kevin connects this directly to burnout, noting that when staff are constrained by rigid but unclear or inconsistent rules, a dangerous "decision paralysis" can set in where the "best bet is not to do much." This dynamic ultimately risks creating an adversarial relationship with the person they are there to support—the very opposite of the healing, supportive connection everyone needs.

Part 2: Personal Impact – Trauma Exposure and the Caregiving Relationship

To understand the personal toll on caregivers, we must first acknowledge a critical reality: individuals with IDD experience traumatic events at a much higher rate. A key factor in trauma is the experience of having little to no control over a distressing situation. For people with IDD, the level of personal control is often significantly less than for the typical person. This heightened vulnerability means that caregivers are consistently interacting with individuals who are, through no fault of their own, in a state of deep emotional distress. The impact of this exposure is not a matter of professional weakness but of human neurology.

“DSPs are sent out and trusted to make critical decisions alone, every single day. Like a baseball coach who can train a batter but can’t stand beside them at the plate, an agency must equip its staff with the judgment and support they need and then trust them to perform.”

Lara explains this dynamic through the concept of co-regulation. We instinctively know how to do this in a positive way. "When you pick up a crying baby," she says, "you drop down in your energy a little bit, you get calm. Your voice... slows down." In this interaction, the baby’s nervous system regulates down to match the calm state of the caregiver.

However, this neurological process can also work in the other direction. "If one human being can regulate down to the calmer human being, it can go the other direction too." A caregiver who is not equipped with specific skills for self-regulation will often be pulled into the dysregulated state of the person they are supporting. This constant emotional wear and tear is what Lara refers to as "empathetic distress or empathetic injury," a more accurate term than the commonly used "compassion fatigue."

The caregiving relationship can be powerfully illustrated with a metaphor: a person in distress is like a drowning person in the water who needs something solid to hold onto. A caregiver’s instinct is often to jump in the water with them. But if the drowning person climbs onto you, "you'll both drown." The key is to shift one's approach. "The way I've always thought about being a therapist or social worker is I'm in the boat," she says. "I will throw you a rope... I can't get in the water and push you up." When a caregiver loses their stable footing, both people are in the water, and no one is safe.

Part 3: Shifting the System – Trauma-Responsive Care as a Burnout Buffer

What can be done about the personal impact of trauma exposure on caregivers? The answer lies in shifting the system itself. Burnout is not just an individual issue; it is an organizational one. As Kevin notes, this focus "sort of turns the camera from the people we're supporting to the people doing the supporting, and they look a lot alike." A truly trauma-responsive organization applies the same principles of care to its staff as it does to the individuals it serves, creating a powerful, built-in buffer against burnout.

This requires a fundamental shift in how an organization views its purpose. The goal cannot be mere compliance or efficiency; it must be to foster an environment where every interaction is an opportunity for healing and connection. The organization's aim should be to review practices and policies that "increase the possibility that when two people meet... they're each trying to help the other one feel safe, connected and in control." This collaborative approach stands in stark contrast to the common top-down model where executives issue mandates and then can't figure out why people "don't get on board."

A trauma-responsive system recognizes that its most valuable asset—its "product," as Kevin frames it—is the quality of the relationships between people. This view elevates the role of the frontline caregiver. "We don't have any workers in our...field, we're all managers," Kevin states, explaining that DSPs are sent out and trusted to make critical decisions alone, every single day. Like a baseball coach who can train a batter but can't stand beside them at the plate, an agency must equip its staff with the judgment and support they need and then trust them to perform.

Ultimately, this shift is a moral imperative. Lara extends the healer’s oath of "do no harm" directly to the workforce. "I do not want to be causing harm to my employees by under-equipping, over-burdening, or under-supporting them," she says. This means leadership must be committed to "protecting their staff and each other as tenderly as the IDD support field tries to protect the people that it serves." When supervisors are obsessed with helping their staff feel safe, connected, and in control, that culture of support is modeled from the top down. A caregiver can only pour from their cup what has first been poured into it.

Part 4: Practical Tools & Cultural Shifts

A common response to discussions about burnout is exhaustion at the thought of implementing "one more thing." Lara notes that the concept of self-care is often heard as, "Here's some more stuff you're not doing." Acknowledging this reality, the most effective strategies are not about adding new burdens but about shifting perspectives and leveraging tools that already exist.

For Organizations: Listen and Leverage

The most profound changes an organization can make often begin with listening. Kevin shared a powerful example of a new agency director who, facing a crisis of trust, hosted pizza lunches to hear from frontline staff. When staff were initially afraid to speak, she provided anonymous notecards. One of the first suggestions was simply to move a “handicap” parking sign closer to the building entrance. The director had the sign moved before the end of the day. While a small gesture, it sent a powerful message to staff that they were safe, connected, and in control at work.

Beyond listening, organizations can use existing information more effectively. Kevin is a proponent of using a tool he calls the "Boss Matrix," which helps leadership analyze programs and data they already have to see how they impact employee stress. Instead of creating new reports, the matrix starts with the blunt question, “What are we already doing?” and examines the answers through the lens of these programs and activities support staff and so mitigate burnout. This approach respects the limited bandwidth of the team while still identifying strengths to build on and weaknesses to address. Kevin Plans to develop this tool and others in an upcoming book.

For Individuals: Build Self-Awareness First

For the individual caregiver, the path to resilience begins with self-awareness. "You can't do anything different about where you are until you know where you are," Lara states emphatically. Before any breathing exercise or mindfulness technique can be effective, a person must first be able to identify their own internal state. Lara recommends using frameworks, like the work of therapist Deb Dana, to learn the specific physical sensations, feelings, and thoughts associated with being calm, hyper-aroused (in fight-or-flight), or shut down.

Only after building this self-awareness can self-regulation strategies be truly effective. The goal is not to add lengthy routines but to have a toolkit of quick techniques that can be used "right in the moment" to manage distress. This two-step process—first knowing your state, then knowing how to shift it—empowers individuals to understand what they truly need and respond effectively, rather than simply following a generic checklist.

Part 5: Sustaining Hope and Human Dignity

So, what can be done when a frontline caregiver is reading this article and feeling exhausted, unseen, and on the verge of leaving the work they once loved?

Lara offers validation: "If you need to go, it's honorable and OK to go." She stresses a truth that is often lost in the demands of caregiving: "The one life that you are given... to take care of is your own, and it is valuable." This begins with self-compassion. In a previous article on this topic for Exceptional Parent Magazine, I highlighted the importance of this internal acknowledgment: "We must acknowledge ourselves first before we can really acknowledge those around us. Every day, we should say out loud to ourselves, 'I am doing the best I can, and I forgive myself for losing focus.'"

Building on this self-compassion, Kevin suggests that caregivers "think about the one or two things that, you know, the agency can do" and then act. "Go to your supervisor and say I need these things, and if I can't get them, there are other agencies that will give them to me." This is not a threat but a statement of value. The path to sustaining hope in this field requires both the profound self-respect to protect one’s own well-being and the courage to hold the system accountable for creating a more humane and supportive space for all.

Resources

The journey toward a more resilient and supported workforce is ongoing. The following resources offer valuable information, training, and community. Lara and Kevin’s books, The Way Through and The Way Forward, published by NADD Press, offer deeper insights into Trauma Responsive Care, which they developed, and how to implement it, can be found on Amazon. They are both working on books covering the topics discussed in this article. Lara’s book is expected to go to press later this year. You can learn more about Aldridge Palay on their website, AldridgePalay.com.

Key National Organizations

· The National Association for the Dually Diagnosed (NADD): NADD is the leading American organization for professionals, caregivers, and families supporting individuals who have both an intellectual or developmental disability and mental health needs. It provides educational resources, conferences, and professional certifications.

o Learn more at: https://nadd.org/

· The National Association of Direct Service Professionals (NADSP): NADSP is a professional association dedicated to elevating the status of Direct Support Professionals (DSPs). It focuses on providing professional development, promoting national credentialing and competency standards, and advocating for the critical role of the direct support workforce.

o Learn more at: https://www.nadsp.org/

About the Author

Practical IDD Workforce Supports

Degrees of Access: Tracing Disability Evolution in U.S. Higher Education -Part 1

MORE FROM THE STACKS