More integration for those with disabilities urged

Community placements for older people with intellectual disabilities has not brought about greater integration, a report has found.

The report, which looked at the physical wellbeing and mental health of more than 30,000 people with intellectual disability nationwide, said more than just a change of address is needed.

Two thirds of those with intellectual disability either experience difficulty or else do not travel around their community at all, and those living in community group homes reported similar levels of loneliness and difficultly making friends to those in institutional residences.

However, the number of men and women who felt left out was slightly lower for those who live in community settings.

The latest study in the Irish Longitudinal Study on Ageing at Trinity College, which surveyed those over 40 years of age and who had intellectual disabilities, found that, at best, those with intellectual disability have sustained a low level of community engagement and in some areas have seen declines in access and participation.

“Concern that placement in the community does not necessarily mean living in the community on the same terms as other community members continue to be well founded for older people with intellectual disability,” the report read.

It added: “Of most concern is that a primary mechanism of community integration — movement to community group homes in many areas — more resembles experiences in institutional settings rather than other community-based living situations such as family care and independent living.”

Those living in community group homes tend to be younger, higher functioning and have fewer health problems, the report read, but there is concern that physical location in the community does not appear to be translating in terms of benefits such as making friends, employment and engagement in neighbourhoods.”

Mary McCarron, principal investigator for the report, said the findings raise serious concerns for the planned movement from congregated settings of older adults with more severe and profound levels of intellectual disability and high levels of ill health.

“We promised that movement to the community would improve the quality of people’s lives,” said Prof McCarron. “Unless the community is truly organised and resourced to support people with intellectual disability when there are complex health issues, their experience may instead be one of social isolation, loneliness and new forms of institutionalisation.”

She said there needed to be a renewed effort to ensure that community group homes are organised to support greater levels of genuine integration.

She said a change of geographical location in its own right isn’t enough.

Also of concern, the report said, is the continuing low level of employment opportunities for people with intellectual disability coupled with low levels of reading, writing, numeracy, and money management capacity which can further hamper community integration.

The study also found the community placement alone is not enough. There is a need for interventions, wider use of technology, and to increase the likelihood of employment.

The report also found the prevalence of dementia among people with Down syndrome has almost doubled to more than 29% since the last study of those with intellectual disabilities four years ago.

The report said these are much higher levels than those seen in the general population with the average age of onset of dementia for people with Down syndrome at 55 years of age compared to 65 years in the general population.