Story: Care and carers
Page 4 – Care of disabled people
In the mid-19th century, care of children and adults with physical disabilities, such as cerebral palsy, intellectual handicaps or mental illnesses, was considered the responsibility of family. Those who were not seriously impaired often went to school or work, or helped at home. Because medical treatments of coexisting conditions such as epilepsy were rudimentary or non-existent, many people with serious disability had short life expectancies.
Mentally disabled people
Psychiatric illness and intellectual handicap were not officially acknowledged to be different conditions until 1911. From the 1860s affected people were often ‘put away’ permanently in asylums, which were deliberately built in remote areas. In the early 1900s, when the pseudo-science of eugenics became fashionable, the belief that intellectual disability was hereditary was common. It became government policy to segregate the intellectually handicapped, to prevent them from having children and to control disruptive behaviour.
Far from home
Conditions in hospitals for the people with intellectual disability were anything but home-like. One resident of Templeton from the late 1920s remembers, ‘There were 106 in the dormitory and they only had four windows, just that much open so you couldn’t climb out … I didn’t have any clothes of my own, not even underclothes. I didn’t have anything of my own.’1
Some residential schools were established to teach work skills to children with mild disabilty, such as the boys’ school at Ōtekaieke near Ōamaru, which opened in 1908, and the girls’ school at Richmond, which opened in 1916. For more serious cases, psychopaedic units were set up, notably Stoke Villas at Nelson Mental Hospital in 1922, Templeton near Christchurch in 1929 and Levin Training Farm and Colony in 1945. Parents were pressured to put their children into residential care, on the grounds that it was better both for them and for other members of the family. Those who chose to keep their intellectually handicapped children at home received no support services, to dissuade them from continuing to care for them. Intellectually handicapped adults who had grown up at home were often sent to mental or psychopaedic hospitals after one or both parents died or became incapable of looking after them.
Physically disabled people
In the 1800s adults with serious disability who were without family support were often admitted to benevolent institutions for the elderly poor. Later, a few homes were established specifically for them, for example the Elizabeth Knox Home and Hospital in Auckland which opened in 1914.
However, there was greater community acceptance of physically disabled people. If the disability occurred as the result of an accident or infectious disease, both of which were common in the 19th century, it tended to be viewed sympathetically. Large-scale events such as the First World War, which permanently injured many young men, and the polio epidemics of the 1920s, 1930s and 1940s, which afflicted children, heightened public awareness.
Laura Fergusson Trust
In the 1960s the governor general’s wife was shocked to see so many young disabled people in geriatric wards. She initiated the Laura Fergusson Trust in 1967. In the following decade, trust homes were founded in Auckland, Wellington and Christchurch. In 2010 the trust continued to provide residential facilities, but also supported-living options, with a strong emphasis on rehabilitation.
Some institutions concentrated on integrating people into everyday life. Residential schools were established for blind and deaf children in the late 19th century to teach them literacy and occupational skills. After the First World War there was state-funded medical treatment and rehabilitation for injured soldiers at convalescent homes and hospitals.
Home care services
The Crippled Childrens Society, set up in 1935 to support physically disabled children, established the Wilson residential home in Auckland, but from 1940 focused on providing services to children in their own homes. From the 1950s local IHC branches established day-care centres, and hostels for short- or long-term care for intellectually handicapped people.
In support of supported living
Although some families were apprehensive about community care for their intellectually disabled child, the reality was often a pleasant surprise. One parent recalled, ‘On our first visit to the group home we went to the front door and instead of having somebody go to the office and sign in and then phone over, and somebody else opening the door, we just went up to the door and rang the doorbell … opened the door and said: “May we come in?” and someone said, “The kettle is on.”’2
Apart from these initiatives, there were few support services for disabled people living at home before the 1970s. The Disabled Persons’ Community Welfare Act 1975 was a landmark piece of legislation, giving practical assistance to disabled people and those looking after them, including loans for motor vehicles and home alterations. From that time, local hospital boards began providing a wider range of home aids.
Growing opposition to large institutions amongst professionals and consumer groups led to the policy of deinstitutionalisation. Between the 1980s and early 2000s, nearly all mental hospitals and psychopaedic units such as Templeton and Kimberley (formerly the Levin Training Centre) closed. Some former patients went to live with family. Others lived together as flatmates with support from community organisations and trusts. The same trend has occurred for seriously physically disabled people, with supported-living options provided by organisations such as the Laura Fergusson Trust.