When NAMHI was formed in 1961 it would have been inconceivable to imagine a time when the majority of children and adults with an intellectual disability would have access to a range of supports and services, both day and residential. There were, however, a number of people who shared just such a vision. Some of you here today, and some who have now passed on, resolved that there should be a new dawn for their less able sons and daughters, their brothers and sisters, or their friends and neighbours.
The concept of equality of opportunity was not well understood at that time, but that is exactly what our early members had in mind when they spread the message that those with special needs also had abilities. It was not acceptable to hide children away from the public. It was not acceptable to say ‘they are ineducable’. It was not acceptable to draw a line in the sand, beyond which a section of society could not advance. It was not acceptable to allow thousands of children to languish at the back of the classroom, largely ignored by teachers trying to cope with classes of fifty or more. It was not acceptable to lock away the less able alongside other groups on whom society had turned its back.
Those early visionaries were obviously skilled in spreading their gospel. The number of parents and friends groups mushroomed. The number of educational, day-care and residential services also expanded. Despite periods of cutbacks in the eighties and nineties, successive governments increased the budget for services to the point where it should very soon be possible to provide an appropriate support service for every child and adult.
This is not something that happens without constant sustained pressure on administrators and elected representatives. Great credit is due to the members of NAMHI and their predecessors. It is relatively easy in the short term to pressurise and campaign to achieve a high-profile victory in a battle. However, it requires a different type of resolve to campaign over a period of decades to bring about lasting and significant change in society. This requires real courage and determination. This type of change comes about by building and maintaining a network, a truly nationwide network, of individuals prepared for a long hard road—prepared to attend countless meetings in summer and winter; prepared for setbacks and disappointments; and prepared to lobby and work with the passion that comes from knowing that your cause is just.
You have brought about a level of change that I think you do not fully understand. Few, if any, campaigning groups in modern Ireland have achieved such change in public attitudes and in social policy as you have. A final tribute to you is that I believe you have the resolve and the reserves of strength to overcome the very serious deficits in the system which still face you in the year 2001, forty years after the foundation of NAMHI.
Some challenges for the future
Despite the progress made in the past forty years, there are still people denied the most basic of rights. You have identified the injustice of people being left in totally unsuitable institutional settings. Nowhere is this more starkly illustrated than in the hundreds of your family members being maintained in Dickensian buildings which represent the remains of the old psychiatric hospital system. Despite goodwill on the part of the staff who have cared for this group for decades, and despite the existence of paper plans to create more humane modern settings, there is an intolerable delay in turning these plans into reality. In a society that tolerates instant decisions of government (for example, the purchase of Farmleigh or the lavish grants to sporting bodies), we must press for the same sense of urgency in addressing the needs of marginalised groups.
The system of supports and services is not able to respond to the needs of those with multiple disabilities, with dual diagnoses or with ‘challenging behaviour’. Those most in need are often those whose families get the run-around from the system. We must seek to have a system that is responsive to need. It may be ignorance on my part, but I have not seen as many ‘early-intervention teams’ or ‘multidisciplinary’ teams as I would have expected in a time of rapid growth. Health boards have a statutory responsibility to provide services and the system by which people access these services must become much more transparent.
I have a particular concern about the method of funding services in the future. Many years ago Joe Adams, former President of NAMHI, advised that services were available free of charge under the Health Act. He cautioned against any movement towards a two-tier service which would mean that those families who could pay for a service would take first place in the queue. He also identified the danger that we could have some services which were poorly funded, as this would represent another risk of two-tier services. The practice of some health boards in insisting that part of a person’s Disability Allowance should be levied to pay for day services seems to me to represent the thin end of a very large wedge. The funding of services should respect the concepts of equity and accountability as set out in the Health Strategy.
The final example of a challenge which I feel must be recognised is represented by the fact that an increasing number of families have to take legal action in order to enforce their child’s rights to an appropriate education. As the Supreme Court is considering an appeal which the government saw fit to make against on a recent decision on such action, it may be inappropriate to comment further at this stage. I would simply commend the determination and courage of Marie O’Donoghue and Kathy Sinnott on behalf of their sons Paul and Jamie. Irrespective of the outcome, their names will long be quoted when legal precedent and constitutional rights are being discussed.
NAMHI and other organisations have been asked to make submissions on a new Health Strategy to be adopted by the government. You have an opportunity to insist that the strategy contains the three main concepts of the existing strategy: standards, equity and accountability. Improving and maintaining the standard of services has never been more important and it will help both providers and consumers of services if we can quote national policy. The inequitable nature of access to high-standard services has been identified as a challenge. Achieving equity will be easier if it is one of the main planks of the strategy. More and more the Department and the health boards will be seeking accountability from those funded to provide services. This should lead to a more equitable service, especially if NAMHI seeks the same level of accountability from the health boards.
Many more opportunities to have people’s rights to a service firmly established have presented themselves in recent times. This gives you an opportunity to ensure that what you have gained in the past is not taken away in the future. The Ombudsman certainly blazed a trail in enforcing people’s rights. Combined with the equality legislation overseen by the Equality Authority, there are opportunities to seek redress for wrongs and omissions. The role of the Social Services Inspectorate and the Human Rights Commission have been explored at this 40th AGM of NAMHI, and we have a unique opportunity to influence the long-promised Disability Bill. If we get the right balance between the various Acts, the Constitution, and decisions of the Courts, we can effectively copper-fasten the rights of those that NAMHI seeks to represent.
We hear many references in these enlightened times to consultation and representation. This can become a reality within the system of services and supports, and can provide an important opportunity to establish an equality-based partnership that would guarantee solidarity in moving into the future. It is my hope that before long people availing of services, as well as their family members, should be included in consultation. Their views must surely count if we are to claim that supports and services are responsive to needs.
Perhaps the most important opportunity to make progress is represented by the fact that in so many areas of your campaigning you are pushing at an open door. Partly because of your work in the past, most groups in Irish society are well disposed towards your aims. Elected representatives, policy-makers, the judiciary and public administrators are all well briefed on the importance of providing properly funded services of a high quality. Those mapping out future policy include the government, local authorities, political parties, social partners and local development boards. It is important to remember that these are all made up of individuals and these individuals either directly or indirectly have experience of people with special needs. This experience may be gained from family members, relations, neighbours, work colleagues or friends. They are holding a door that is open to you. Give them the opportunity and they will support you in your work.