The experiences of people with developmental disability in Emergency Departments and hospital wards.
Hospital care still leans on family helpers because staff lack disability skills—BCBAs can close that gap with quick training.
01Research in Context
What this study did
Iacono et al. (2003) asked people with developmental disability about their hospital stays.
They used a survey to learn what went well and what did not in emergency rooms and wards.
Most people said staff gave water, medicine, and help moving, but they still needed a family member or support worker beside them.
What they found
Basic care was usually met, yet staff lacked skills to talk with or calm the person.
Support people filled the gap by speaking for the patient and watching for pain or fear.
The study shows a hidden gap: hospitals rely on unpaid helpers instead of trained workers.
How this fits with other research
Garrick et al. (2022) asked parents of autistic kids about emergency visits 19 years later. They found the same problems: bright lights, long waits, and staff who did not know autism basics. The story has not changed.
Doughty et al. (2010) gives a fix. One hospital built short staff lessons, picture cards, and pre-visit tours. After the program, adults with IDD reported smoother blood draws and EEGs. The 2003 gap met its match.
Ghanouni et al. (2021) widened the lens to adults with ASD across all health settings. They still hit walls finding quality care. The Teresa findings extend beyond the hospital doors.
Why it matters
You can copy the H et al. model. Offer a 30-minute in-service to your local ER or ward. Bring a one-page tip sheet: use plain words, allow extra time, let the support person stay. One short training can cut the need for constant hand-holding and give your client a safer, calmer stay.
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02At a glance
03Original abstract
The aim of this study was to determine whether needs of people with developmental disability were met during visits to Emergency Departments and stays in hospital. Responses to a questionnaire were obtained from 328 clients of three Victorian organizations. Of 119 respondents who had attended a hospital within a year of completing the questionnaire, most indicated that their needs were met in the areas of hydration and nutrition, medication, mobility and discharge. There were significant associations between getting enough to drink and being able to move from a bed, and having a support person stay with the patient. These results suggested a great reliance on support people during hospitalizations. Issues raised in the questionnaire were explored in follow-up interviews with 11 respondents or their support people. Reliance on support people emerged as a strong theme in interview transcripts, as did hospital staff's negative attitudes, and lack of skills and knowledge in developmental disability. These results are discussed in light of recent literature and the need to address issues in the larger context of the needs of support people and hospital staff.
Research in developmental disabilities, 2003 · doi:10.1016/s0891-4222(03)00041-6