If ever there was a chance to eliminate the grosser forms of discrimination in the field of mental disability, it would have been in the last five years. For some time people had been aware of the puzzling contrasts between well appointed homes for people with intellectual disability and the conditions tolerated in the institutions provided for individuals with mental illness. Although homes for the handicapped had a specific section in the Revised Budgetary Estimates each year, the perception of most people was the homes were run by voluntary agencies out of their own resources, with the help of flag boxes. People from the world of show business donated minibuses and taximen took residents out on annual trips. The provision of swimming pools was a popular funding-target for parents and communities.
Such homes were not at all like the psychiatric hospitals—large, disturbing buildings with disturbing residents, a drag on the public finances. Families did not speak of relatives in a mental hospital. There was no fundraising. Contrary to the provisions of the 1945 Mental Health Act, there was no inspector of Mental Hospitals for the twenty years before 1989. For long periods, residents in psychiatric hospitals were not mentioned in the Dáil, nor was there any lobbying on their behalf. One of the very few references to the mental health services in the mid-twentieth century was a Dáil question from a well-known Kerry deputy, drawing critical attention to the costs of feeding patients in one Dublin psychiatric hospital. He was not the only one who begrudged in-patients the food in their mouth. As a group, people who were mentally ill were not popular.
Does this explain the discriminatory funding in the field of mental disability? A deeply lodged prejudice—fear, even—of the mentally ill? Fear and prejudice that reach into the hearts and minds of the civil servants who set the priorities when allocating funds? A discrimination which may even have worked to the advantage of people with an intellectually disability?
Of course not. The people who allocate the funds may or may not be prejudiced, in either direction—it’s of no consequence, because, in truth, they finance neither people who have an intellectual disability nor people who have a mental illness. They do not finance people at all; they finance agencies. Agencies are not people, they are interest groups. Some of the agencies are called ‘voluntary’ and some are called ‘statutory’, but all draw on public funds. There is intense competition for these funds; many jobs depend on how they are allocated. Negotiating skills are of paramount importance in the kind of system that has evolved, without legislation of any kind.
The agencies which we call voluntary hold most of the good cards. Historically the government came looking to them, not they to the government. For whatever reason, the government of the day did not want a statutory service, so they sought out private agencies—mainly religious orders—to do the work. It is important to remember that when government departments persuaded the voluntary agencies to take up the work, the status of ‘the mentally handicapped’ was roughly the same as that of ‘the mentally ill’, possibly even lower. After all, quite a large proportion of the latter group ‘got better’. In the late nineteenth century, in the western world generally, mental deficiencies were seen as evidence of ‘degeneracy’ and were blamed for poverty, madness and crime. So ‘idiots’, ‘feeble minded’ and ‘moral defectives’ were isolated in large institutions—‘mental assylums’. In Ireland religious orders were able to achieve a status for those in their care which they would never have had otherwise; the religious were held in high esteem, some of which passed on to the people they looked after. They had no inhibitions about insisting on providing a quality service, and they looked for quality funding in return—as well as total autonomy and very limited accountability.
Not so the statutory services. In the first place they hardly developed beyond the psychiatric hospitals, where people with intellectual disabilities lived in the same conditions as the long-stay psychiatric patients. To this day there are painful contrasts between the statutory and voluntary services, with hugely important consequences for many thousands of Irish citizens. Diagnosis is not what matters, the important factor is whether they are served by a statutory agency such as a health board, or by a voluntary agency such as those which feature in the agreement Enhancing the Partnership. It is the misfortune to be dependent on a funding pattern that relies on prestige. Ideologically, voluntary agencies are in fashion—they have far more prestige than the statutory agencies.
What has developed in Ireland is a two-tier system where nobody has to pay—except the public finances. Gaining access to a well-funded quality service does not depend on one’s ability to pay or on the possession of insurance cover, as for instance in private medical care. The criterion is acceptance by a voluntary service provider who enjoys all the privileges of a private service provider, without having to charge its customers.
By anyone’s reckoning, the years from 1998 to 2002 were boom years in the finances of this state. Over the five years, the expansion in the allocation of funds for increased health expenditure was quite startling—nowhere more so than in the increase in non-capital expenditure allocated for the running of the services for people with intellectual disability. About £121.2 million of new money came into these services in those years—money which created new jobs and new programmes within the services. Over the same period less than half that amount of new money found its way into the mental health services—hardly the way to tackle the daunting backlog of unmet needs in the mental health services in every health board area. Had there been a demand for such services before allocations were made? We don’t know.
We do know, however, that there is a clear demand for the relocation of people with an intellectual disability from inappropriate accommodation in psychiatric hospitals to proper accommodation and appropriate services. Indeed there has been a clear commitment to this policy by the government since 1998. But progress is slow and as yet too few places have been created, and with very few therapists. This is not a level of service acceptable within any of the voluntary agencies.
The method of financing services for intellectual disability by agency, in the same old way, does not work for groups which were neglected in the past, such as those in psychiatric hospitals or in the direct care of health boards. And neither does it work for the smaller ‘Section 65’ voluntary agencies. This can best be illustrated by quoting from a document prepared by such an agency: reference
‘This organisation is not effectively operating on a “ level playing pitch” in comparison with other organisations in the region. We have never been in a position to pay salaries at Department of Health or Stewart’s Hospital rate as a number of organisations, and directly-funded agencies in the region, have done over recent times. For this reason staff prefer to work in these organisations …. We believe that the best method of retaining staff … is that all agencies pay salaries at agreed national rates.’
The system represents a distortion of market forces directly caused by government funding. The absence of paramedical staff or therapists for people with intellectual disability who are still resident in the psychiatric hospitals is so blatant a discrimination that in itself it should compel a different method of funding. How can one identify needs without a multidisciplinary team? How can one prepare an accurate database without a psychologist? How can service plans be prepared? How far behind must these services fall before the Department of Health and Children can be persuaded to look again at the Report on the Status of People with Disabilities—especially its recommendations on the method of service delivery (Chapter 4, 4.34 and 4.40), individual assessment of needs and statement of needs.
There are other measures which the Department might look at, such as costing the items of need which could perhaps be ‘tied’ to the person with the disability, rather than to the agency or service provider. This might give some reality to the notion of service contracts which could be ‘bought’ by the person with the disability, empowered by carefully designed grants. Exercises like Enhancing the Partnership, which were designed to give the impression of some kind of progress towards equity in funding, were in reality designed to get the directly-funded agencies off the backs of the Department of Health and Children, while giving them every assurance that nothing would change. And nothing has changed.
As John Boland, TD, said in the Dáil in 1980:
‘The onus is on the legislature to provide for the rights of the individual, especially in relation to the mentally handicapped, who are least able to ensure their right to treatment and care.’
That statement has been endorsed by the UN Committee for Economic, Social and Cultural Rights in May of this year. Whatever about the personnel of the Department of Health and Children, the onus still lies on the Minister and our legislature. No matter what way one spins it, that still stands.