Human rights and people with learning disabilities have not often featured in the same sentence, but the signing of the United Nation’s Declaration of the Rights of Persons with Disabilities two years ago led to a renewed interest in human rights by disability service providers. The Council for Quality and Leadership’s (CQL) focus on rights and the requirement for Human Rights Committees, along with a strong emphasis on human rights in the recently published HIQA National Standards, and the recent revelations about abuse in institutions, have all reinforced the importance of upholding basic human rights in service provision.
It is inevitable that human rights issues will arise for service providers. Common areas where rights issues arise are: placing restrictions on a person because of safety concerns or because of their behaviour; using medication to control a person’s behaviour; restricting rights because of staffing shortages; or exercising the person’s rights ‘in their best interest’ because of their limited understanding or concerns that they may be exploited. Agency interventions which raise human rights issues include locked doors and other restrictions on movement, medical treatment without informed consent, or absence of full control over one’s own money. Human rights violations may also result from lack of action to safeguard personal possessions, to protect personal privacy, or to prevent bullying. Other important rights issues include being paid the minimum wage, choosing where and with whom one lives, and protection for one’s good name.
In adjudicating on any rights restriction, the main requirement is to ensure that fair procedures were followed. But what are ‘fair procedures’?
THE TEN RULES OF FAIR PROCEDURES
The basic rules of fair play have evolved over hundreds of years and are now universally accepted as the principles which underpin fair procedures that are often referred to as ‘natural justice’ or, in the USA, as ‘due process’.
1. An independent adjudicator
The first rule is that the person who investigates or makes the decision has no reason to favour one side over the other. Indeed, for those in dispute to trust the investigator, he or she must not only be impartial, but be seen to be impartial. This is a very old rule and is expressed in the Latin phrase ‘nemo judex in causa sua’—no one is a judge in his own case.
2. An opportunity to present your case
The second rule is that both sides to a dispute are given the opportunity to present their side of the story fully. When something obvious happens—someone is seen hitting someone else—it is tempting to rush to judgment, to make an instant decision, to impose an immediate sanction. There is an Irish proverb which cautions: ‘Ná tabhair breith ar an gcéad scéal go mbeire an taobh eile ort!’—don’t give judgment on the first story until the other side catches up with you.
3. Support in presenting your case
People with intellectual disabilities are inevitably at a disadvantage in remembering, in articulating, and in answering on-the-spot questions. They have a learning disability! To enable them to present their case effectively, they need support—a person who will help them feel comfortable before an adjudicator or committee, who may ‘translate’ or assist with communication, who may even have helped them write some notes or points they wish to make. While the primary need is for emotional support, practical help may also be needed. This principle is referred to by the European Court of Human Rights as ‘equality of arms’ and is the reason governments must provide free legal aid in serious cases, for those who can’t afford it.
4. Heard without delay
There should be no unnecessary delay in investigating any rights issue. This is especially important when it involves someone who has difficulty recalling events which occurred some time ago and will become confused over timelines and sequences when there is a gap of weeks since the events in question. The adage ‘Justice delayed is justice denied’ has particular relevance for people with intellectual disabilities.
5. Principle of least restriction
In disability services, a rights restriction may be imposed to protect the person from risk to themselves or others. In other words, the restriction is not a punishment for some crime, but to safeguard the person. However, the imposition of a rights restriction is the last option, only justified after every other option has been tried. While a restriction may be in the interests of the person, the ‘principle of least restriction’ applies.
6. Informed consent
Finally, where a human right is restricted in the person’s best interests, the restriction should be fully explained to the person and, where possible, their consent to the restriction sought. (This is the equivalent to consent to medical treatment.) A rights restriction is never justified where it is imposed because of someone else’s actions (e.g. locked into the house because another resident with no road sense might leave).
7. A proportionate response
It is important that whenever sanctions or consequences are imposed, they are proportionate to the risk involved, and not an over-reaction. This rules out any attempt to ‘make an example’ of someone or to ‘send out a message’ by imposing an unjustified restriction or sanction.
8. Being consistent
While no two situations are identical, there should be consistency in how similar issues are dealt with. Similar breaches of rights should be responded to in similar ways. It is unfair to treat someone very differently for the same breach of human rights. We would automatically consider this if we were dealing with a staff issue, but sometimes forget it when dealing with the rights of people we support. (The legal concept is “following precedent”, particularly well-established precedent set by a higher court.)
9. A right to appeal
A basic protection against poor decisions is the right to have your case re-heard by a higher authority. If you are not satisfied with the decision made following the investigation, there should be somewhere to go to have the matter reviewed or re.heard. You should have at least one opportunity to appeal the original finding. Of course, all the earlier principles apply to the re-hearing—the person hearing the appeal should be impartial and should hear both sides fully, the person appealing should have the support they need to make their case, and there should be no undue delay.
10. A review date
Any restriction should be time-limited or have a date on which it will be reviewed. In other words, no restriction should last indefinitely. The review date should be set when the restriction or sanction is being imposed.
The Role of the Human Rights Committee
Many agencies have now set up Human Rights Committees to deal with restrictions or breaches of the human rights of people using the services. Not every issue or complaint will be a matter of basic human rights. Typically an agency will have a number of channels to resolve disputes and deal with complaints from people supported by the service or others acting on their behalf. General complaints will be dealt with under the agency’s Complaints Policy which is now backed by the 2004 Health Act. This allows for informal, locally-resolved complaints and more serious and formal written complaints which are referred to a designated Complaints Officer.
Allegations of abuse, neglect, mistreatment and exploitation may be referred to the Gardaí if they relate to criminal behaviour, and will be investigated by them. The HSE will be informed and may also investigate to ensure adequate policies, procedures and controls are in place to prevent a reoccurrence.
Behavioural programmes should be reviewed by a technical committee with real expertise in this field, to ensure that interventions reflect best practice in the field. Where interventions restrict the person’s human rights, the matter may also be considered by the Human Rights Committee.
The Human Rights Committee exists to promote best practice and to foster a culture of respect for human rights. A rights issue may be raised by anyone with knowledge of the situation, including the staff members proposing the restriction, as a means of seeking guidance on what is appropriate. Restrictions on individual rights may be justified but should only be imposed following fair procedures which include evidence that alternatives have been tried and failed, that the person has been involved and understands why the restriction is in place, and that a date has been set for the review of the restriction.
The Rights Committee should include people who are independent of the service provider—members of the local community who are not connected to the agency. It is particularly helpful to have someone with a legal or advocacy background, and someone with a medical or behavioural background, as well as members who will ask the obvious questions and think for themselves. Human rights are common to us all and the UN Declaration is clear that the human rights of people with disabilities are exactly the same as for people without disabilities. The only real difference is that people with disabilities may need more support to realise their rights.