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"How the Office of the Ombudsman Can Enable Inclusion of People with an Intellectual Disability in Society" (21.04.2007)

Address by Emily O'Reilly, Ombudsman

at at the Inclusion Ireland AGM, Clarion Hotel Cork.

Introduction:

May I begin by thanking you for the honour of inviting me to address you here today. May I also say how much I admire the mission of Inclusion Ireland, "The Promotion of the Rights, Independence, Dignity and Equality for people with Intellectual Disabilities ". For me the most important word in that statement is "dignity". So much flows to it and from it. When one respects and guards a person's dignity the bestowing upon them of whatever is necessary to support that dignity must naturally follow.

I am also very much taken with the focus you have placed on a rights based approach, based on rights identified by the users of the services for people with intellectual disabilities. My aim in this presentation is to provide you with a fuller picture of the role of the Ombudsman in relation to people with intellectual disabilities, and how my Office can be instrumental in the enhancement and protection of such rights.

The core function of the Office of the Ombudsman is to protect the individuals who avail of the public services, from unfair, unsound and unjust actions on the part of those who are entrusted to deliver those same services. In this capacity I seek to ensure that individuals availing of those services are treated with dignity, respect and sensitivity, and that complaints from individuals or their families are handled in a proper, fair and understanding manner.

Ombudsman is a rather difficult word. It stems from a Swedish concept of a people's representative, a person who would monitor the treatement of the people by the state power and make sure everything was in order. Other country's use the term mediator, or public defender, but I would hope that by this stage Irish people are familiar with and comfortable with the title Ombudsman.

Insofar as this gathering is concerned, I am primarily concerned with things that go wrong in the area of health and personal social services. It is not surprising, therefore, that I am often critical of aspects of those services, highlighting shortcomings on a regular basis, and I will continue to do so in the future. Events over the past twelve months, ranging from Leas Cross to the Lourdes Hospital in Drogheda, demonstrate that such protection, and the element of accountability afforded by my Office is still a vital requirement.

As Ombudsman, I treat each individual person who presents a complaint to my Office, as just that, a unique individual person, just like each one of you listening to me here today.

I differentiate between the individual and the category to which he or she may belong. For most of you the category generally may be that of "client" or "service user " or "self advocate". However, it is vital that you do not confuse the category "client/service user/advocate " and the entity "person". A client is a member of a category, he/she is not the category. He/she is first and foremost an individual person. Health and Personal Social Services are delivered to a person, not to a category.

I have often thought that the logic of such a differentiation leads, not to the development of customer charters, but rather to the development of a charter of a person's rights, as a recipient of a service. It was with this concept in mind that my Office developed a code of good practice for the health service in dealing with patients which, together with the Ombudsman Act, I intend to use as a framework in my examination of complaints relating to public healthcare.

The Ombudsman

So who is the Ombudsman. Well I am a woman, a former journalist and a mother of five children. Some of you will be aware of my role as Ombudsman but, for those of you who are not, I will explain the background briefly.

The office of the Ombudsman opened in January 1984. The Office is based on a model which is recognised across the world and, in very many respects, what the Office does is replicated in the work of other national Ombudsman Offices across Europe, in Australia, New Zealand and in Canada.

As I said earlier the core function of the Ombudsman is to protect the individuals who avail of the public services from unfair, unsound and unjust actions on the part of those who are entrusted to deliver those same services which, it is claimed, lead to adverse effects for the complainant; where this is found to have been the case, I will recommend suitable redress.

The Ombudsman does not have the power to nullify the impugned action or decision. Neither does she have the power to impose a legally binding solution. That is the role of the courts. These might seem to be significant obstacles to an effective Ombudsman operation but, in fact, they are strengths. For one thing no Ombudsman recommendation, made following an investigation, has ever been rejected by the public body concerned.

Public Bodies:

The following are the public bodies subject to investigation by the Ombudsman at present:

• Government Departments and Offices (e.g. Department of Social, Community & Family Affairs, Department of Education & Science)
• Local Authorities (all county councils, corporations, urban district councils and town commissioners)
• The Health Service Executive and An Post

There are some specific exclusions from the Ombudsman's jurisdiction, the principal ones at present being:

• decisions in relation to asylum seekers, work visas and citizenship;
• actions taken in the administration of prisons;
• issues which have already been adjudicated upon by a court or where court action has been initiated.

The enactment of the Health Act 2004, was an important landmark in the development of the Office of the Ombudsman. Since 1985 the jurisdiction of the Office was limited to the administrative actions of the HSE and those hospitals which came under its direct control. The new legislation makes provision for the establishment of a statutory complaints procedure in the health service, not only for those services delivered by the Executive but also for those agencies providing services on behalf of the Executive. The net outcome of this development will be that the major hospitals in the Dublin area, the so called Public Voluntary Hospitals, will come within my jurisdiction, as will other similar hospitals in the rest of the country, together with (so important for you) agencies, nation-wide, providing services on behalf of, or with the assistance of, the HSE to the intellectually disabled.

The remit has also being extended by provisions contained in Part 3 of the Disability Act 2005. The Ombudsman will have jurisdiction to deal with complaints about actions relating to access to public buildings and services, and also in relation to sectoral plans drawn up by a number of key government departments, including the Department of Health and Children. This legislation also has specific implications for health service providers in the area of the assessment of need, service statements and redress, and this is vitally important for you. However, the Government did not provide any role for the Ombudsman in dealing with complaints in this area.

Issues:

The Office receives several thousand complaints each year. Roughly 50% of the valid complaints involve civil service bodies, about 25% relate to local authorities and about 17% involve the health service. A typical complainant has been refused a payment or a grant or believes he/she has been paid less than his/her entitlement. However, not all complaints have to do with payments; issues to do with service delivery e.g. delays, failure to explain decisions, patient care in the hospital system, improper discrimination, unfair treatment etc. also feature quite prominently. A particular issue which may be of importance to you going forward will be how applications for a refund of the illegal health charges will be dealt with. Many people think that this refers only to nursing home residents. But I know that you are keenly aware that this is not so, and residents of various other institutions are also affected. I can guarantee you that I will seek to ensure that any such applications are treated in accordance with the law, and also in a proper, fair and transparent manner. Indeed I have received a number of complaints about the provision which prevents parents from making applications on behalf of their children under the Scheme.

Dealing with Complaints:

Procedures for taking and dealing with complaints are designed to be as user-friendly as possible. Complaints may be made in writing, by telephone, on-line or by calling to the office in Dublin. Staff are available to the public on a monthly basis at Citizen Information Centres in Cork, Limerick, Galway as well as in Coolock, Dublin. In addition a series of visits to other provincial centres is arranged on an annual basis (my staff will be in Killarney next week). Staff also pay visits to the homes of complainants where appropriate.

Details of a complaint will always be put to the public body concerned. Depending on the response, staff may examine the body's files on the issue and will often also discuss the case with the relevant officials. Having heard from the body, and considered the matter, we will then generally discuss the case further with the complainant. To some extent, this procedure functions as a form of mediation and it can often result in a settlement acceptable all round. Only in a small percentage of cases does it become necessary to resort to a written investigation report with formal findings and recommendations. Such formal reports are necessary where the adverse effect to the complainant appears, on the face of it, to be significant and where the body is unwilling to take action to mitigate the claimed adverse effect. Formal reports are also resorted to where the issues raised are of general significance and where principles or interpretations of wider application may be developed.

Promoting Good Practice:

An Ombudsman serves the public not just by dealing with individual complaints but also by promoting good practice within the public service. I utilise my Annual Reports to highlight practices or laws which are unfair in their consequences. In more recent years my Office has taken the initiative to highlight and actively promote good administrative practice, including getting public bodies to set up their own complaints systems. We have also set out a list of rights which people should be able to invoke in their dealings with public bodies. These include; the right to be heard, the right to receive sufficient information, the right to be given reasons for decisions that affect one and the right to assistance and representation. You will see shades of your own role in these rights.

Particular Groups:

I mentioned earlier that I admired the focus which your organisation place on a rights based approach for people with disabilities. Whilst the Ombudsman institution relies on both law and broader concepts of justice and equity in the fulfilment of its mission, because the treatment of persons by the administrative branch of government is under scrutiny, human rights issues may be implicated in a complaint. The language of the human rights arena is not, generally, invoked by complainants, but human rights principles have certainly helped shape the response of the Ombudsman to complaints. Very many of the issues which I have dealt with, and commented upon, over the years are human rights issues, though this parlance has not generally been used. The rights of travellers, of people in long-stay residential care, of children with special educational needs, the equal right of women to social security payments, issues of unfair discrimination - these are amongst the human rights issues with which the Office has dealt. More generally, to the extent that the Ombudsman is there to ensure fairness and equity by the public service in its dealings with the public, this is fundamentally an exercise in the promotion of human rights and in part a domestic human rights defensive mechanism. In this context I will be paying particular attention to the provisions of the European Convention on Human Rights Act, 2003 as an element in my consideration of complaints under my new jurisdiction.

How then can the Office be of particular relevance to people with intellectual disabilities? Let me say here that we never differentiate between those complainants who have a disability and those who have not. In this context I think it is important to emphasise that the Ombudsman does not make representations on behalf of individuals. In the process of effecting a fair and independent examination of an issue presented to me as a complaint, I seek to ensure that public service activities and, in particular, the exercise of decision-making powers, whether discretionary or otherwise, are carried out not only in a proper legal manner but in a manner consistent with fairness and good administrative practice, irrespective of any characteristics of the complainant. Notwithstanding this stance people with intellectual disabilities can benefit in a more generalised manner from the work of the Office and examination of individual complaints often leads to the identification of systemic defects in procedures, approach or even attitudes and at this level valuable feedback can be given to the bodies within remit. Procedures and systems can then be improved in order to ensure that particular complaints do no recur. In addition, without usurping the role of the Oireachtas, my Office can, and does, draw attention in my reports to anomalies, inadequacies or inequalities in the law or the application of same. It is in these areas that I am able, to some degree, to level the playing field for disadvantaged groups in our society. Let me outline a particular example of a complaint which demonstrates the systemic affect arising from a specific act of advocacy.

Domiciliary Care Allowance:

I received a complaint from a representative of a support group for parents with autistic children in relation to Domiciliary Care Allowance (DCA) entitlement. In effect she came to us as an advocate for those individuals, around an issue of improper discrimination. When I examined the complaint I found that there were different practices operating within the same health board (as it was then) in relation to the payment of DCA.

Seventeen members of the support group who had applied to Community Services in Laois/Offaly for DCA in respect of their autistic children, were awarded the allowance from the date of the application for the Allowance. However, members of the group living in the Longford/Westmeath area were awarded the allowance from the date their child became eligible for the Allowance (which was earlier than the date of application). The advocate considered that the parents living in the Laois/Offaly area were being treated in a discriminatory manner, and that arrears should be paid to them from the time that their children became eligible for the allowance. In all seventeen cases the children had an involvement with the Board and its staff in relation to their condition prior to being awarded DCA. However, the parents had not been advised of their possible entitlement to the allowance. This was the reason why they had not submitted their claims at an earlier date.

I contacted the Board about the complaint and pointed out that there was an onus on health board staff to inform their clients of the existence of various welfare entitlements. I considered it reasonable to expect in cases of this nature, where there had been contact between the Board's staff and the children, that the staff would have brought the possible entitlement to DCA to the parents’ attention.

The Board reviewed the applications involved and agreed to pay arrears in each of the seventeen cases. The arrears were backdated in each case and the total arrears amounted to over €76,000. Of equal importance was the fact that all of the other health boards also accepted my position, so you can see how an individual case can have a knock on effect for other people in similar situations.

Intellectual Disability and the Right to Complain:

In the past, providers of services to the intellectually disabled may have considered complaints as irritants interfering with their normal work and/or as criticisms of their decisions against which they had to defend themselves. While there is greater emphasis nowadays on improving the quality of service, the standards of service are, generally, set by the providers themselves and they also devise the systems and procedures for achieving these standards. The effectiveness of these procedures and the relevance of the standards set can, however, be judged or assessed properly only by reference to the very people, the individuals for whom the service is provided. A good internal complaints system is essential in maintaining the confidence of such individuals. In this context a good system should be:

Accessible

Simple

Speedy

Fair and Independent

Confidential and Impartial

Effective and Flexible

Hurdles to Making a Complaint:

As advocates I am sure that you can tell me of the many hurdles that face individuals with intellectual disabilities who wish to lodge a complaint. It is very important that these hurdles are taken into account by the individuals dealing with such complaints. Difficulties may arise when individuals have problems articulating their views or are themselves incapable of making decisions. Complaints are often difficult and complex, consequently they require an extra degree of sensitivity and usually a greater input of staff time.

Complainants may not be believed for a number of reasons; their thought processes may be seen to be, or may actually be, disordered or otherwise impaired. Accounts of events provided by a complainant may be perceived as the product of an impairment rather than having a basis in reality. Complaints may often not be recognised, or may be disregarded or dismissed as a symptom of the disability. In addition, they may be perceived as less credible than the service providers, leading to premature conclusions; their perceived motives for lodging a complaint may undermine appropriate complaint handling processes. In my opinion there is no place in complaints management for premature and uninformed judgments on the credibility of complainants or the validity of the complaints.

Service users may often not complain because doing so may strain the relationship with their service provider or they may fear adverse responses. This perceived barrier to lodging a complaint may be very much greater because of a number of factors; long term relationships with services providers increases the development of dependencies; there is little or no choice of service providers involved in the person's care in the public sector; the control service providers exercise in certain environments e.g. supported community accommodation; the reliance on service providers to provide support and access to community services; the difficulty of some individuals in expressing themselves assertively.

Finally, users may not know what standard of service to expect, or have an understanding of their rights. In the absence of such information they may not know when they have grounds for making a complaint. They may not be aware of options for raising complaints, for example, how complaints are made, who to speak to about a concern or complaint and what options exist if they do not want to complain at the local level.

Strategies for Overcoming Such Hurdles:

Providers should consider the following strategies when dealing with complaints:

• A greater use of advocates to assist service users to formulate and voice their complaints would be of tremendous assistance to those users. It is important that staff are aware of the particular difficulties facing those individuals when they wish to complain. The use of an advocate, either from within the organisation or from an independent body, should not be seen as an escalation of the complaint but rather as a means of facilitating local resolution. The availability of a trained advocate early in the complaints process can often ensure that the issues are clarified both for the individual and the service provider. It may also allay the individual's potential fears about making a complaint and assist them to understand and contribute to the complaints process. However, advocacy services are not a substitute for a complaints procedure and should not be utilised to deflect potential complaints. Ideally, I would like to see the development of the role of an independent advocacy service, facilitating the individuals' movement through the process, matters concerning treatment, therapies, medications, social welfare benefits, family relationships and domestic concerns. In this context my staff have commenced discussion with Comhailre in relation to its role in this process and how my Office can facilitate engagement in this development.
• specialist training of staff to foster a positive complaints management culture;
• appropriate supervision and support for staff and managers in implementing complaint management guidelines;
• guidelines, which should include provision for monitoring the implementation of complaint management guidelines;
• management support and leadership for the development of suitable policies, the provision of staff education and the monitoring of complaint management system;
• provide the users with accessible information on the complaints system, how to lodge a complaint, how to access advocates and service standards. This information may need to be provided periodically depending on the nature of their illness or mental status.

Under the Disability Act 2005, public bodies must appoint an Access Officer to provide or arrange for and so-ordinate the provision of assistance and guidance to persons with disabilities in accessing its services. These individuals should be fully au fait with the body's complaints system

Everyone in an organisation providing services to the intellectually disabled, at all levels of staff, needs to be firmly committed to the right of users to complain, either directly or through a family member, guardian or other representative. Complaints should be approached as an opportunity rather than as a problem. The process by which complaints are investigated and resolved should be transparent and accessible to the public.

Culture:

I am firmly of the belief that the foregoing strategies can flourish in organisation with a strong client centred culture. Culture manifests what is important, valued and accepted in an organisation. It is not easily changed when it is deeply held, and not susceptible to change by a pronouncement, command or an emotionally laden description of a new vision. Most of us instinctively regard complaints as unpleasant and not something to be welcomed, because they are a very personal comment on performance. Once the word complaint is used there is always the danger of a personal and usually negative reaction. There may be a sense of fear and hurt, concern about reputation, distress at the lack of understanding of action and motives, and vulnerability. Worry, surprise, annoyance, anger, disappointment, anxiety and distress are amongst the most common reactions. Clearly, there may be a fear that complaints will have a significant and lasting impact on those to whom blame is attributed. Responses can, and do, exacerbate a complainant's sense of grievance by appearing defensive, using technical language, casting doubt on the complainants' account, or arguing that dissatisfaction is a symptom of the disability being treated.

The other end of the cultural spectrum is one where the satisfactory resolution of complaints is seen as a very important objective and information generated by the complete process is valued. In this culture staff are adequately trained, and supported, with complaints investigated promptly and with authority.

The culture of any organisation is set by the Chief Executive and Senior Management. It is essential that they view the handling of complaints as an integral part of good governance. The culture must reflect the fact that they are accountable for their performance and that their management processes are increasingly open to scrutiny by the users of the service, Government, the general public and, indeed, the media. This accountability and openness extends to how it handles complaints, and this, in turn, requires that staff are adequately trained to deal with complaints and supported in the event of a complaint being made against them. Ideally training in handling complaints should be a compulsory part of induction and continuing education. The acceptance of regular reporting on the complaint handling process would also feature prominently in this culture, not merely as a record of the number of complaints received without any adequate analysis or comment, but rather with a view to monitoring arrangements for complaint handling, considering trends in complaints and lessons which can be learned.

Finally, can I return to the issue of your uniqueness as a person which I outlined at the start of this address. Each one of us is a unique human being. Your humanity is not defined by what it does or what it can do. It is defined by what it is. Your humanity is not a performance judged on its successes. It is a given, which can be recognised even in its failures. Whether or not a person speaks, thinks, creates, works or is capable of socialisation, every human being has the same rights (even if he or she cannot exercise those rights) or rather we have the same duties towards them. A human being is still a human being even when he/she has ceased to function normally. Someone who is profoundly mentally handicapped may not talk, reason, laugh, judge or take part in politics, but he or she is no less human for all of that. Humanity becomes a value or a virtue in the sense in which humanity is the opposite of inhumanity. There is a certain value accorded to humanity, imposing on oneself a certain number of duties as regards our behaviours to others, the philosophical foundation of human rights. One's own duty is to be human, to act compassionately and this is something that nobody can do on your behalf. It is by doing good to men and women that one helps humanity to exist.

Finally, can I leave you with the following extract from the inauguration speech by Nelson Mandela as a form of encouragement to you on the journey your organisation has embarked upon.

Our deepest fear is not that we are inadequate

Our deepest fear is that we are powerful beyond measure

It is our light, not our darkness that frightens us

Our playing small does not serve the world

We were born to manifest the glory of God that is within us

It is not just in some of us

It is in everyone

And as we let our light shine we unconsciously give other people permission

to do the same

Thank you for your kind attention.

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