Report of a national survey of older people with lifelong intellectual handicap in New Zealand

Abstract

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.

Nutrition and Adults With Intellectual or Developmental Disabilities: Systematic Literature Review Results*

“…As with the general population, overweight and obesity in adults with intellectual or developmental disabilities appear to increase through midlife (Burkart et al, 1985;Hand, 1994;Yamaki, 2005). Hand (1994), for example, did not find significant differences in overweight and obesity in elderly adults with moderate to profound disabilities who lived in community versus institutional settings. Levels of disability and age may be additional critical factors in who becomes obese rather than an individual's residential setting.…”

Building an Inclusive Research Team: The Importance of Team Building and Skills Training

“…The fourth academic researcher, a male esteemed advocate in the field of inclusive research, acted as an advisor for the project. The four researchers with intellectual disabilities were women aged more than 51 years (in line with Hand's ; definition of old age in people with intellectual disabilities). Two non‐governmental organizations supporting people with intellectual disabilities were contacted to assist with the recruitment process.…”

Analysis of 88 adult patients referred for genetics evaluation

“…Institutionalized patients also increasingly represent only the most severe end of the disability spectrum and generally do not ascertain individuals without cognitive disability. There are several population‐based prevalence studies of adults with intellectual disability that included ascertainment of individuals living in the community [Hand, 1993; Hand and Reid, 1996; Janicki et al, 2002]. The referenced studies characterized health issues in these populations, but did not assess the etiology of the intellectual disability beyond identification of patients with Down syndrome, cerebral palsy, and “unspecified neurologic impairment” [Hand and Reid, 1996].…”