The characteristics and residential situations of people with severe intellectual disability and the most severe challenging behaviour in Wales.
Small community houses with higher staffing and planned programs have replaced large institutions for Wales's most challenging cases.
01Research in Context
What this study did
Researchers visited every home in Wales that served people with the most severe intellectual disability and challenging behavior.
They counted 41 individuals and wrote down where they lived, how many staff helped them, and what programs they used.
The team compared two service models: old large facilities versus new small community houses.
What they found
Most people now lived in small community houses instead of big institutions.
These new houses had more staff per person and used planned behavior programs every day.
Large facilities still existed but served fewer people than before.
How this fits with other research
Kunze et al. (2025) shows that adults with IDD still rely on tiny family networks decades later. This extends K et al.'s work by revealing that even after moving to community houses, formal services may not build larger support circles.
Carr et al. (2002) used the same survey method in Scotland to map specialist health services. Both studies prove that counting actual services across a whole country is possible and useful for planning.
Romero (2017) argues that behavior analysts must shape disability policy, not just deliver services. K et al.'s census gives the hard numbers you need when you join those policy discussions.
Friedman et al. (2018) found that most US states still allow restraint in Medicaid waivers. This creates an apparent contradiction with K et al.'s picture of modern Welsh community houses using positive programs. The difference is geography and policy: Wales moved toward proactive support while many US systems still permit reactive restraint.
Why it matters
Use this Welsh census as your baseline when you argue for small community placements. Show funders that higher staff ratios and systematic programming are already standard in some countries. Ask your team: do our homes match these 1998 Welsh standards yet? If not, what stops us?
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02At a glance
03Original abstract
A total population study of people in Wales with severe intellectual disability and the most severe challenging behaviour was undertaken to identify their characteristics, and the nature of their residential arrangements and service support. Forty-one participants were identified: five living in family homes, 17 in community housing, 17 in hospitals and two in hostels. The family home group had slightly higher adaptive behaviour scores than residents in community housing. Both groups had significantly higher scores than the hospital and hostel residents combined. Assessments of challenging behaviour showed the groups to be similar and to have a considerable range and extent of severely problematic behaviour. Co-occurrence of several forms of frequent severe problem behaviour was the norm and there was a marked association with social impairment. The five people living in their family homes had nominated service keyworkers, but reported professional input was low. The residential situations comprised two main service types: (1) traditional services, which were characterized by large living unit and facility size, atypical architectural design, relative isolation from the community, a greater level of buildings adaptations, low staff:resident ratios, a relatively high percentage of qualified staff, and a relative absence of systematic approaches to goal planning and structured activity; and (2) new community houses, which were characterized by small size, domestic design, location within the community, a lower level of buildings adaptations, much higher staff:resident ratios, and less emphasis on qualified staff but a greater emphasis on systematic working methods. Community settings were similar in having 'specialist' resident groupings based on challenging behaviour or conditions like autism in which challenging behaviours are common. A policy to provide for people with these characteristics being resettled from traditional settings in this way seems to have been established.
Journal of intellectual disability research : JIDR, 1998 · doi:10.1046/j.1365-2788.1998.00154.x