Recent years have seen a change in the perception of persons with a disability. Traditional approaches, based on exclusion and paternalism, have been replaced by an increasing recognition that these persons have legal rights. These rights are based on core and fundamental values in human rights law, such as respect for the rights of the individual and non-discrimination. The rights-based approach finds support both in domestic and international law.
Human rights law and people with disabilities
The need for changes in Irish law is acknowledged in the Report of the Commission on the Status of People with Disabilities and in the Report of the Constitutional Review Group. Specifically, there is a need for equal-status legislation to ensure that the human rights of people with disabilities are adequately protected in law.
From an international law perspective, the United Nations International Covenant on Civil and Political Rights (ICCPR) and the International Covenant on Economic Social and Cultural Rights (ICESCR) are significant. Ireland has ratified both covenants and is thus bound by their terms. Ireland is obliged to provide periodic reports to the supervising UN committees of these covenants on the manner in which the rights contained in them are protected in Irish law.
From the point of view of people with disabilities, the ICESCR is of particular significance. It sets out minimum standards in relation to such rights as equality and non- discrimination, health, education, standard of living, work, social services and participation in society.
Ireland’s First (1996) Report under the ICESCR will be examined by the supervising committee in April 1999. This will provide the opportunity for an external monitoring body to assess and evaluate Ireland’s track record on areas of human rights law and service provision which directly affects people with disabilities. For that reason it will be of interest to all involved in the area of disability.
At a European level, the European Convention on Human Rights and European Union initiatives also challenge the traditional approach to people with disabilities in this country.
Human rights belong to ‘everyone’
Reading through a human rights text, the word ‘everyone’ is used to refer to those who are entitled to claim the right described. The individual is regarded, first and foremost, as a person who can legitimately look to have his/her rights respected and vindicated by the State. Responding is about respect for the integrity of the individual.
When advocating for persons with a learning disability—be it as a parent, professional service provider/user, policy-maker or other—claims can usually be put in a civil and negotiable way. But the focus must always remain on the recognition of the human rights of the individual as legal rights.
Fairness, liberty and human dignity
Fairness, liberty and respect for human dignity are challenging concepts. For a service user or provider of residential care, they may arise for consideration in some or all of the following:
- the nature of a placement in a residential setting;
- the responsibility for ensuring that the residential rules are fair;
- ensuring that the care system is not overly intrusive;
- respect for the privacy of an individual and his/her liberty;
- acknowledgement of the vulnerability/capacity of an individual;
- ensuring fairness in procedures and appropriate involvement of parents and family members.
A human rights perspective requires all practices, policies and procedures to be informed by reference to such minimum standards as those contained in UN conventions and resolutions and other relevant legal texts.
Parents, professionals and policy-makers
All those concerned with the area of persons with learning disabilities will find a human rights-based approach a useful one. The ICESCR can be used as a tool of advocacy for the empowerment of individuals.
Pooling the wisdom gained from service users, parents and service providers, relying on what is needed and what works, adhering to best practice and keeping step with reality will require constant refinement. That refinement is more likely to be successful if it is firmly rooted in a perspective which recognises the importance of empowering people with disability, as a human rights-based perspective clearly does.
Policies will fail or be inadequate unless service providers, bureaucrats and politicians have the appropriate human rights knowledge. If they fail in this regard, Ireland as a state can be held to account for its inadequacies by an external body such as the ICESCR Committee.
Reflecting on rights
(i) Some Issues—residential care
In the case of the rights of persons in residential care, the law is difficult to state with certainty. There are many different perspectives and distinct approaches, depending on what aspect of the law is involved.
In the area of service provision, there is no specific statutory framework other than the Health Act of 1970 which sets out the provision of community-based services. Health Boards and the voluntary sector provide residential services as part of the continuum of care services for people with disabilities.
Residential care is voluntary care, save in the exceptional cases where a person is committed to a mental institution under the Mental Health Acts 1945 (as amended). Where a residential unit has rules and procedures that provide for restrictions on a resident’s liberty, these should be clearly defined, written up and agreed by all parties prior to taking up residence.
Some of the legal issues include recognition of a resident’s freedom of action, personal privacy etc., balanced with a service provider’s responsibility/duty to control risks and behaviours that are dangerous.
In law, restrictions on liberties are not tolerated save in prescribed circumstances. Reconciling issues of control and restraint that arise for the resident’s own safety pose important questions. These highlight the need for specific legislation in the area of residential provision for people with learning disabilities.
(ii) Parents—some issues
There are issues of concern to parents and family members with regard to a son or daughter who has legally attained the age of majority but who does not have a level of capacity to make judgements that involve legal rights/issues. This is a complex and difficult area in law. Issues may arise around:
- the administration/changes of drug regimes;
- lack of consultation with next of kin;
- consent to treatment;
the possibility that, if consent is not given for treatment which is considered necessary, an application for wardship may have to be brought before the High Court to authorise the treatment.
A human rights-based perspective is particularly relevant to issues of consent to treatment.
(iii) Working in partnership
Individual and family rights are universally respected human rights. The Irish Constitution recognises these rights also. It should be the hallmark of every service provider that they recognise the role of parents and that they work in partnership with those caring for an individual who is unable to care for him/herself-
Information and consultation are essential components of partnership, so that all parties recognise the need for planned actions on behalf of service users and the full implications of the course of action.
The resolution of conflicts, if they arise, can best be achieved through consultation. A human rights-based perspective has inherent within it a recognition of the value of a consultative process. Where such processes fail, aggrieved parties may be forced to resort to legal action. The lack of a human rights perspective has been shown all too clearly in the many recent cases involving the right to education of children with special needs.
It is important that a human rights perspective is present in the minds of all involved in the area of disability.
A human rights perspective means not being apologetic in seeking the proper level of care and service and the proper recognition of the rights of the persons with disabilities.
The test of a civilised society is how it treats its most vulnerable members.