Right: St. Ita’s Psychiatric Hospital, Portrane, Co. Dublin, which was built in 1896 as an overflow facility for the Richmond Asylum in Dublin City Centre.
When I look back on 1976, what I remember above all is the overwhelming sense of rejection which settled over our family. It was in that year that our son could no longer be accommodated at his special school in Belfast. Five years before, no place could be found for him in our own jurisdiction. The situation had not changed. There was no service for Tom—no school, no training, no therapy, neither day nor residential. No room could be found, not even in a psychiatric hospital. We had moved to Dublin when Tom was six in search of a school which he could attend. At the end of a year he was dismissed. We found a place for him in Belfast at the Rudolf Steiner School at Glencraig. He was cared for there for five years, and he was then well into his twelfth year.
We did what a lot of people do when hit by an insurmountable problem. We wrote to the papers. A public protest followed. Parents got in touch. We met regularly and we learned hardly be regarded as revolutionary. Tom was provided with a place in a psychiatric hospital, and that kept us occupied for the next twenty years or so. We joined the National Association for the Mentally Handicapped Ireland (NAMHI. now Inclusion Ireland). Inclusion provided us not only with a much broader platform for putting forward our views, but it also enabled us to learn from other people and other services. During the long years since then, we have met some extraordinary people whose courage and stamina opened our eyes.
Like ourselves, many parents could not find a service for their children or were provided with unsuitable places. Others found that a perfectly acceptable placement with a private voluntary organisation was no guarantee of permanence. When I first came in contact with some of these parents their overriding dread was that at some time in the future their son or daughter would be moved out of the ‘Home for the Mentally Handicapped’ into the nearest psychiatric hospital. On the other hand, people with intellectual disabilities who were accommodated in the psychiatric hospitals had a certain security—they were rarely, if ever, moved. It was a significant advantage which parents used to good effect. If we complained about conditions, we did not fear dismissal of our disabled child. We worked out ways of changing the system. We had active Visiting Committees who made detailed reports which we sent to all the relevant authorities. We proposed a motion or two for each Annual General Meeting of NAMHI, which was then able to present these to the appropriate Department of State. But it was a long, slow business.
The services for people with an intellectual disability in Ireland were beset with anomalies and inconsistencies, almost none of which was due to the chronic shortage of money with which our generation was so familiar. Some of the consequences of practices and decisions taken in the 1960s and 1950s were disastrous. In 1980 a working party set up by the Department of Health described the situation very well:
— 2000 people with mild or borderline mental handicap were in residential care. At least 225 people with normal intelligence were included in the residential service.
— There were 2000 people with serious mental handicap living outside in the community who needed residential care.
— There were 2500 mentally handicapped people in psychiatric or geriatric institutions.
The services for people with an intellectual disability have not yet recovered from this scandalous misplacement. As for the damage done to the people with intellectual disability involved, it is incalculable.
Going back to the very early days when people with mental handicap were accommodated in work houses or in mental hospitals with no specific service for the mentally handicapped in these institutions, a comparatively small number was taken care of by a very few religious orders. They were funded by means of a global grant directly from the Department of Health. It was a manageable solution whilst the population of people with a mental handicap remained small, owing to a high rate of infant mortality, but the improvements in health care and medical progress enabled many people with mental handicap to live to adulthood and well beyond. By the time the health boards were established in 1970, numerous county agencies had come into existence at a local level. They were a targeted response to the way the services were delivered. The great majority of people with an intellectual disability were not included in the services which the directly-funded agencies provided.
Why this method of providing a service for its vulnerable citizens was chosen is a matter for conjecture. The direct-funding method was an obvious source of unequal treatment. Why should an institution which happened to be funded by the local health board have to struggle with what the health board could spare for them, while in the same area a directly-funded facility could bask in the favour of the Department and the Minister? When the situation of the mentally handicapped in the mental hospitals began to come to light, the funding discrepancies of this two-tiered system became absurd. Other questions were asked. Who decided admission to a service? Who decided dismissal? Who and how were standards established? Who monitored them? Why has it taken so long to reform the system?
As early as 1957, there was a request for legislation from an interested backbencher called Deputy Griffin. His request was ignored. No special legislation for the establishment and regulation of services for the mentally handicapped was ever enacted in this state. For whatever reason there was no appetite for legislation for the mentally handicapped. Attempts were made by various departmental authorities, particularly in view of the high number of children with an intellectual disability who were admitted into psychiatric hospitals, but they were firmly blocked. The opposition to legislation was certainly a factor in the arrangements made for dealing with the expansion in numbers in the second half of the twentieth century.
Possibly the only way to avoid the necessity for legislation was to turn the whole system over to the religious. It would not be necessary to have legislation if the religious orders ran the service and used the grant. In 1953, in considering the options for an expansion of the services, the Minister and the Department decided that the extra places should be created in institutions wholly run by religious orders. There is no doubt that in the 1950s the services of the religious orders were in high demand by the general public and the decision was generally welcomed. The demand for the religious orders had much to do with the reticence which surrounded the whole subject of mental disability and mental handicap. Confidentiality was a high priority for the family of a person with a mental handicap. Religious orders scored highly in this regard.
When the Department surrendered the whole service for people with an intellectual disability to 14 directly funded agencies, few people thought it unwise. The departmental officials were uneasy when it emerged that the religious who controlled the admission to the services preferred to provide a service for the mildly handicapped. There was very little they could do. There continued to be grave shortfalls in the service for the more severely disabled.
The establishment by the religious of so many residential schools for the mildly handicapped, to the exclusion of the severely handicapped, the autistic, those mentally handicapped with behavioural difficulties, and the adult mentally handicapped was a grossly discriminatory act, a piece of neglect the consequences of which are notoriously hard to unpick.
How can the state reverse those unwise decisions made so long ago? Successive ministers have tried to change some of the worst situations. Some people with a mild intellectual disability were moved by the large voluntary institutions and rehoused more suitably. Some people were moved from the psychiatric hospitals. These improvements were easier to do in a time of prosperity. It takes a lifetime, but life generally has improved for people with an intellectual disability. Who knows what the future will bring?