Designing Crisis Systems That Don’t Fail the Most Vulnerable

Rare disease communities understand fragility — not only biological fragility, but system fragility.

For families navigating rare and medically complex conditions, crisis is rarely theoretical. It can be clinical, behavioral, logistical, and financial. It can surface at 2 a.m. in an emergency room unequipped for complexity. It can appear when a caregiver reaches burnout. It can emerge when fragmented systems fail to communicate across silos.

While crisis infrastructure is often discussed within behavioral health, its underlying architecture — funding stability, workforce integration, peer inclusion, cross-agency coordination, and legislative accountability — offers critical lessons for the rare disease ecosystem.

Carlos Mackall, M.S., LMSW, has spent more than two decades building crisis systems that are designed not simply to respond, but to stabilize, integrate, and endure. As a national leader in behavioral health strategy and a contributor to SAMHSA’s National Guidelines for Behavioral Health Crisis Care 2.0 and the 988 implementation framework, Carlos has helped shape how states operationalize crisis response at scale. For Rare360, his work prompts an important question:

What would it look like if rare disease systems were built with a similar structural intentionality as modern crisis care?

A Discussion with Carlos Mackall, M.S., LMSW

1. You’ve spent over 20 years advancing crisis care nationally. What first drew you to crisis system design?

   
   

   Crisis care exposes the fault lines in a system. When someone is in crisis, there’s no room for inefficiency, fragmentation, or ego. You either have coordinated infrastructure — or you don’t. Early in my career, I saw how often people were failed not because we lacked compassion, but because we lacked design. That realization shifted my focus from individual service delivery to system architecture.
   

2. Rare disease communities often experience “system crisis” — fragmented care, unprepared emergency settings, workforce shortages. What parallels do you see?

   
   

   Crisis systems and rare disease systems share a common vulnerability: they serve populations that don’t fit neatly into standard models. When systems are built for averages, complex populations fall through the cracks. The solution isn’t just adding specialty services. It’s designing coordinated pathways that anticipate complexity instead of reacting to it.
   

3. You played a key role in Maryland’s 988 legislation and sustainable funding structure. What lessons are transferable beyond behavioral health?

   
   

   The biggest lesson is this: infrastructure must be funded like infrastructure. You cannot build a statewide crisis response system on short-term grants. Maryland’s telecommunications fee created predictable, protected funding. That stability allows workforce development, performance measurement, and long-term planning.

   
   

   Rare disease advocacy faces a similar challenge. Without sustainable funding models, even the best-designed programs remain fragile.

   
   

4. You are known for integrating peers and community health workers into crisis systems. Why does this matter structurally?

   
   

   Peer integration isn’t symbolic — it changes outcomes. Individuals with lived experience understand nuance that traditional clinical models can miss. But integration must be structural. It requires training pipelines, supervision models, reimbursement mechanisms, and cultural acceptance.

   
   

   In rare disease communities, patient advocates already serve as informal navigators. The question is whether systems formally recognize and support that role.

   
   

5. Workforce shortages are affecting every healthcare sector. What does sustainable workforce design require?

   
   

   Three things: clear role definition, emotional support infrastructure, and policy-level investment. Crisis systems cannot rely on heroism. They must rely on sustainable staffing ratios, training, and retention pathways.

   
   

   The same principle applies to caregivers in rare disease. If the system depends on unpaid resilience, it will eventually fracture.

   
   

6. Trust is increasingly fragile across healthcare. Where do systems most often break it?

   
   

   Systems break trust when they promise coordination but deliver fragmentation. When funding disappears. When communities are consulted but not included in decision-making.

   
   

   Trust is not built through messaging. It’s built through reliable performance.

   
   

7. What does “whole-person crisis care” mean in practice?

   
   

   It means integrating behavioral, medical, and social supports instead of triaging them separately. It means recognizing that mental health crises do not exist in isolation from housing instability, chronic illness, or caregiver stress.

   
   

   For medically complex populations, especially rare disease patients, whole-person models are not optional — they are necessary.

   
   

8. If you were advising rare disease leaders designing next-generation infrastructure, what would you emphasize?

   I would emphasize building systems that are durable, not personality-driven. That starts with funding models that outlast leadership cycles and political shifts, ensuring stability beyond any single champion or moment of urgency. I would stress integrating lived experience structurally — embedding patients and caregivers into governance, workforce pathways, and decision-making frameworks rather than positioning them as symbolic advisors. Transparent outcome measurement must also be central, because trust is reinforced when communities can see performance, impact, and accountability in real terms. From the outset, infrastructure should be designed for coordination across silos — clinical, behavioral, social, and policy — rather than attempting to retrofit alignment later. And finally, crisis preparedness should be treated as a core design principle. Rare disease systems, by definition, serve medically complex populations; anticipating moments of instability and embedding responsive pathways into the foundation of care is what ultimately transforms fragility into resilience.

Closing Reflection

Crisis systems are built for the moments when everything else fails. For rare disease communities — where complexity is constant and fragility is lived — the future may depend less on isolated innovation and more on coordinated infrastructure.

Carlos Mackall’s work reminds us that durable systems are not accidental. They are legislated, funded, staffed, measured, and continuously redesigned. The question for the rare disease ecosystem is not whether crisis will occur. It is whether the system will be ready.