Report of a national survey of older people with lifelong intellectual handicap in New Zealand.
Older adults with lifelong ID still face the same service gaps today that New Zealand mapped in 1994.
01Research in Context
What this study did
Wulfert (1994) mailed a national survey to every known New Zealander with lifelong intellectual disability born before 1940. The team asked carers about living place, health problems, and services the person still needed but did not get.
This was the first head-count of older adults with ID in New Zealand. No treatment was tested; the goal was to see how big the group was and what they lacked.
What they found
One in four of these elders had no extra major disability yet still missed therapy, day programs, or regular doctor visits. Many lived with ageing parents who feared what would happen next.
The survey showed clear gaps: dental care, mental-health support, and planned housing were the top unmet needs.
How this fits with other research
McCarron et al. (2014) ran the same kind of survey in Ireland twenty years later. They zoomed in on epilepsy and found one in three older adults with ID had seizures, most still poorly controlled. Together the two studies say the same cohort keeps growing and still waits for help.
K-Reid et al. (2005) looked at adults with ID in Sweden and found half had hidden mental-health problems. This backs up Wulfert (1994): lack of service is not a New Zealand oddity; it is a worldwide pattern.
Matson et al. (1994) surveyed older adults with ID in Hong Kong the very same year. Both teams struggled to reach families and had to rely on carers for answers. The twin headaches show why this population stays "hidden" no matter the country.
Why it matters
If you write plans for adults with ID, treat ageing as a red flag. Screen for epilepsy, pain, sleep, and mood even when the client seems "stable." Use the carer interview tools these surveys share, and build a roadmap before crisis hits. A thirty-minute check-in each quarter can catch the gaps the 1994 study first flagged and later papers keep confirming.
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02At a glance
03Original abstract
This paper reports on a national project to investigate the numbers, health status and service needs of people with mental retardation born before 1940. A prevalence of 1.43 per thousand was established nationally, with wide regional variation. Intensive local case finding produced 19% of the study group, not otherwise known to service agencies. In 1990, 42% of the population resided in institutions, 7% with family, 13% in rest homes, and 38% in community-based residential facilities. Of 1063 cases identified, 13% were people with Down's syndrome, 25% were identified as having a psychiatric diagnosis and 17% as having epilepsy, but 23% had no major disability. About 32% had visual problems, 40% had weight problems and 75% received regular medication. Seventy-five per cent have at least occasional contact with their families. The service system is in the process of change as a result of shifts in public policy, responsibility and funding. Personal interview data, reported elsewhere, demonstrated the desire and ability of the people concerned to be included in these decisions. Major needs identified were therapeutic services, medical care, community and recreational services, and support for families. Research areas recommended as priorities are consensus classification and definition of the population, identification of patterns of ageing among different subgroups, and studies of public policy.
Journal of intellectual disability research : JIDR, 1994 · doi:10.1111/j.1365-2788.1994.tb00395.x