Planning and decision making about the future care of older group home residents and transition to residential aged care.
Lifelong group-home promises often collapse; start early succession planning and teach families their rights to avoid rushed nursing-home moves.
01Research in Context
What this study did
Researchers talked to families of older adults with intellectual disability who lived in group homes. They asked how plans for future care were made and how moves to nursing homes happened.
The team used open interviews. They wanted to learn why lifelong group-home plans often failed and how families felt during late-life transfers.
What they found
Most lifelong care plans did not hold up. When nursing-home moves occurred they were rushed and families felt left out of the choice.
Parents said they lacked clear rights training and early succession plans. The result was stress and surprise placements.
How this fits with other research
Smith et al. (2014) extends these findings by showing group-home staff also feel lost when Down syndrome meets Alzheimer’s. Staff use trial-and-error because they lack joint training with aged-care services.
Diemer et al. (2023) acts as a successor. That study gave aging caregivers peer navigators who cut red-tape and boosted service use. It offers a fix for the very planning gap the 2011 paper exposed.
Lam et al. (2011) used a survey and found group homes scored high on choice and planning. This seems to clash with the current study’s tale of rushed moves. The gap likely stems from method: the survey captured day-to-day supports, while the interviews captured crisis transitions.
Why it matters
You can head off a last-minute nursing-home discharge. Start succession talks when clients turn 50, not 70. Add a peer navigator or train families on written rights. One extra meeting each year can turn a crisis move into a planned move.
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02At a glance
03Original abstract
BACKGROUND: Planning for future care after the death of parental caregivers and adapting disability support systems to achieve the best possible quality of life for people with intellectual disability as they age have been important issues for more than two decades. This study examined perceptions held by family members, group home staff and organisational managers about the future of older residents and the decisions made that a move to residential aged care was necessary. METHODS: Grounded Dimensional Analysis was used to guide data collection and analysis by an interdisciplinary research team. Three sets of interviews over a period of 18 months were conducted with a family member, house supervisor and the programme manager for each of seventeen older group home residents in Victoria. For the eight people for whom it was decided a move was necessary and the six who eventually moved focussed questions were asked about the decision-making process. RESULTS: While plans for lifelong accommodation in a group home proved unfounded, key person succession plans were effective. However, decisions to move to a residential aged care facility where necessary were made in haste and seen as a fait accompli by involved family members. CONCLUSIONS: Although family members take seriously their mandate to oversee well-being of their older relative, they have little knowledge about their rights or avenues to safeguard untimely or inappropriate decisions being made by professionals.
Journal of intellectual disability research : JIDR, 2011 · doi:10.1111/j.1365-2788.2010.01297.x