They Called 911: “Now what?” said the person, the caregiver and the medical staff
Better health outcomes begin before a person enters the hospital’s front doors.
“My name is Johnny, I am 20 years old, have autism and live with my parents, who are my primary caretakers. I am nonverbal and primarily use my iPad for soothing and communication. Tonight, during dinner, I got a sharp pain in my side and became inconsolable, and my parents struggled to help me regulate like they typically can. They decide to call 911 as I am pointing to my side and crying. EMS arrives, new faces, big stretcher, moving fast and flashing lights outside. They don’t know me, and I don’t know them and I am in pain for a reason I can’t identify or explain. What is happening, and where am I going without Mom or Dad? It’s so loud and bright.”
For individuals with intellectual or developmental disabilities (IDD), mental health needs, sensory processing differences or complex needs, a medical emergency can involve more than a physical crisis. It can also involve confusion, sensory overload, communication barriers, fear and loss of control. Bright lights. Sirens. New faces. Quick movements. Unfamiliar touch. Pain. A fast transition from familiar settings like home, school, day programs or community settings into an ambulance or medical setting with all the unfamiliar that comes with it.
For first responders, these moments require speed, skill and clinical judgment. For the person receiving care, the same moment may bring added complexity, especially when communication, sensory needs, emotional regulation or past experiences with care or systems shape their response.
That is why Laura Baker Services Association’s Behavioral Supports team recently provided training to healthcare workers at Northfield Hospital. The training focused on identifying and supporting individuals with developmental and mental health needs, including how sensory tools and strategies can strengthen hospital transitions for individuals.
Laura Baker Services Association brings more than 125 years of experience and working knowledge in supporting people with developmental disabilities. Addressing complex needs, low-incidence disabilities and highly individualized support is our sweet spot. This experience helps equip health care teams with practical tools for situations in which a person’s presentation and needs do not fit a standard response.
LBSA’s Behavioral Supports program works with people with IDD who present challenging behavior. At its core, the program helps equip the people, teams and systems that support individuals across daily life, workplaces, homes, schools, health care settings and the broader community.
This work is not limited to one setting or one role. It builds a shared understanding and practical skills among everyone involved in support, from family members and group home staff to first responders, teachers, employers and health care teams.
The goal of the Northfield Hospital training was practical: help healthcare workers better understand how to identify individuals and assess needs that may be impacting how they communicate, process information, feel oriented and comfortable, and cooperate and engage with staff during a likely scary transition into a care setting they are unfamiliar with.
The room was full of head nods and aha moments. Healthcare workers recognized patients they had already cared for: the person who couldn’t follow multi-step instructions, the one who became agitated without an apparent medical cause, the one whose gestures and sounds were communication, not confusion. The training gave those moments a framework and a set of practical responses.
The conversation that followed went deep. Hospital leadership and nursing staff brought their own experiences to the table, and the exchange moved quickly from awareness to action. What does this look like in our system? How do we make sure this information travels with the patient? How do we build this into what we already do? Those questions shaped a rich dialogue about what better care for patients with IDD could look like inside their specific setting.
The content stayed practical throughout. Healthcare workers learned to read behavioral signs they might otherwise misinterpret: avoiding eye contact, using repetitive sounds, resisting touch and shutting down. These are not symptoms of a difficult patient. They are often a person’s most available language for communicating pain, fear or overwhelm.
Small adjustments make a real difference: one instruction at a time, calm language without idioms, dropping to eye level during an assessment, asking caregivers what helps or giving the person time to process before expecting a response.
The partnership with Northfield Hospital reflects what becomes possible when emergency medicine and disability-informed care sit at the same table. Better outcomes do not begin at the hospital doors. They begin with the first person who knows what they are seeing and what to do next.
Heather Durenberger
Nonprofit Impact Strategist