Older adults with lifelong intellectual handicap in New Zealand: Prevalence, disabilities and implications for regional health authorities

Aim. To find and describe the total population of persons in New Zealand born before 1940 with lifelong intellectual disability and to provide health and services data for regional health authorities. Method. An intensive community based casefinding process identified 197 (19%) people not known to the two major service providers, the public hospitals and New Zealand Society for the Intellectually Handicapped (IHC). Prime caregivers provided information about personal characteristics, health status, and services utilisation and needs. Results. One thousand and sixty-three people with lifelong intellectual disability were identified and surveyed. Forty two percent lived in public hospitals, 7% with family, 13% in rest homes and 38% in community based facilities. The national prevalence was 1.43 with wide regional variation. Prevalence in Southern RHA was 2.34, in Central 1.76, in Midlands 0.70 and in North Health 0.87. The age range was 51 to 88, with 56% aged between 51 and 60 years, 32% between 61 and 70 and 12% over the age of 71 years. Twenty three percent had no major condition, disability or disease, 28% had some unspecified neurological impairment, 4% cerebral palsy, 13% Down's syndrome, 17% epilepsy, 21% musculoskeletal impairment, 14% cardiovascular disease and 25% a psychiatric diagnosis. A significantly higher number of physical disabilities was found in people living in hospitals, including 15 of the 17 blind people and 41 of the 53 people with mobility problems. There was wide variation among RHA areas in demand for therapeutic services, community and social support services. Conclusion. Past policies and practices of hospitalization have impacted on the present distribution of the study group. The services system must now accommodate regional differences and characteristics of this population and new demands to achieve goals of community integration.