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Relationships and Rights -The Application of the Code of Rights to Consumers with Intellectual Disability

The Application of the Code of Rights to Consumers with Intellectual Disability

1. Introduction

People with an intellectual disability have the same rights as anyone else in society to develop friendships and relationships, to have sexual contact within those relationships, to live together, to marry, and to make choices regarding having children, or using contraception. However, these issues often present a dilemma for the caregivers, medical professionals, and family members responsible for the day to day care of intellectually disabled people. The question of how best to deal with the issue involves fundamental human rights, particularly the general right to autonomy and self determination. It also requires a consideration of particular rights established by the Code of Health and Disability Services Consumers' Rights.

For the purposes of the legislation under which I operate as Health and Disability Commissioner, any person with a disability that reduces that person's ability to function independently and means that the person is likely to need support for an indefinite period, is a "disability services consumer". As such, they are entitled to all the rights in the Code. Today, I would like to discuss how caregivers such as yourselves can use the Code to deal with issues relating to the sexual expression and enjoyment of intellectually disabled people who have or are in the process of developing relationships.

I will start by outlining the provisions of the Code of Rights which are most relevant, and will discuss their implication for decisions by providers to prohibit sexual contact or, conversely, to make facilities available for the co-habitation of consumers. However, it is not only the Health and Disability Commissioner Act and the Code of Rights which apply to such decisions. Other legislation, such as the Contraception, Sterilisation and Abortion Act and the Crimes Act are also relevant, and I will comment briefly on the way in which these interact with the legislation under which I operate. I would also like to discuss the importance of sex education programmes tailored to meet the needs of intellectually disabled consumers, and the role caregivers must play in ensuring these needs are met. Throughout this discussion I will refer to sexual contact between persons with a similar level of intellectual ability.

2. The Commissioner's Legislation

The Code of Health and Disability Services Consumers' Rights and Health and Disability Commissioner Act 1994

Firstly, it is important to understand some of the basic concepts and definitions which make up the Commissioner's legislation. The Code is a regulation in terms of the Health and Disability Commissioner Act, and took effect from 1 July 1996. While the Code covers rights in respect of the quality of services throughout the health and disability sector, it does not cover issues of purchasing or entitlement to any particular service.

I promote the Code as a tool to improve service quality. The health care or disability service provider which incorporates the principles of the Code into its code of practice, training and induction programmes can only improve its relationship with its clients, increase the effective utilisation of its service, and reduce the chance of serious complaints.

When receiving health and disability services, consumers have all the rights provided for in the Code, and the providers of those services are subject to the obligations and duties the Code imposes. The Act sets out a list of providers to whom the Code applies. "Health care providers" include "any person or organisation providing or holding themselves out as providing a health care service to the public", whether that service is paid for or not. This includes all registered health professionals, and extends to alternative health providers. The definition of a disability services provider is even wider as it is not limited to those providing services to the public. I would like to comment on this definition in a little more detail, as it is of particular relevance to today's discussion.

A disability service provider means "any person who provides, or holds himself or herself or itself out as providing, disability services". Disability services are defined in section 2 of the Act to include goods, services and facilities provided to people with disabilities for their care or support or to promote their independence. The definition covers every aspect of the consumer's overall care, and also includes all services, facilities and goods provided as part of, or incidental or related to, this care. For example, day care, full-time care, and supported accommodation facilities, including any special education programmes, volunteer-assisted group activities, and even family support in the home for consumers with intellectual disabilities are clearly disability services.

Furthermore, the Act makes it clear that an action which may breach the Code of Rights also includes any policy or practice, or any failure to act. This means that any decisions concerning sexual contact between consumers, made as part of the provision of services to those consumers, must be exercised in accordance with the Code. This includes management decisions to provide areas for safe sexual expression within a supported accommodation facility, to permit consumers to establish a relationship and set up a flat together, or to place restrictions on sexual expression. These decisions constitute actions "incidental to the care and support" of the person involved.

3. Respecting the Consumer's Independence and Needs

 

While all of the rights in the Code apply to disability services consumers, some of them require particular consideration where decisions are made in respect of consumers' choices about sexuality, relationships, or contraception. The first three rights of the Code together form an attitudinal umbrella under which all services must be delivered, and, together with effective communication practices, they are particularly important where consumers with an intellectual disability are involved.

Respect - the "Key to the Code"

Right 1 of the Code gives every consumer the right to be treated with respect. This right is the cornerstone of the Code, and most of the other rights in it are an elaboration on this basic requirement. The Code is about people, and respect for the intrinsic value and uniqueness of each individual underlies all the rights within it. This includes respect for a person's sexuality. Further, Right 1(2) of the Code allows every consumer to have his or her privacy respected. This covers matters of personal physical privacy. Accordingly, a consumer's right to exercise their sexual independence should not be frustrated by the lack of a private environment.

The manner in which the respect required by Right 1 is demonstrated in practice will vary according to what is reasonable in the circumstances. In some cases, providing accommodation for couples may be appropriate. Alternatively, it may be sufficient to allow consumers to close their bedroom doors with confidence that someone will knock before entering. There is a risk that without adequate provision for privacy, sexual contact will occur in inappropriate environments. This not only compromises the dignity of the consumers concerned, but may endanger their safety. It may also compromise other residents' right to privacy.

Freedom from Discrimination and Exploitation

Right 2 of the Code gives every consumer the right to be free from discrimination. Discrimination in the Code of Rights means discrimination which is unlawful by virtue of the Human Rights Act 1993 . As the scope of the definition of "intellectual disability or impairment" is ultimately a matter for the Human Rights Commission, I do not intend to discuss this point today. However, it is possible that steps to prohibit sexual contact between intellectually disabled consumers, in circumstances where no similar prohibition exists for people without such a disability, may be contrary to that Act. Likewise, that Act prohibits a refusal to provide goods or services (such as contraception, for example) on the grounds of disability. Where a consumer with an intellectual disability is competent to make a choice about contraception, they are entitled to do so, free from discrimination.

Right 2 of the Code also gives consumers the right to be free from coercion, harassment, and sexual exploitation. As these factors are an important consideration where decisions about consumers' relationships are being made, I will discuss them in more detail shortly.

Dignity and Independence

Right 3 gives every consumer the right to have services provided in a manner that respects the dignity and independence of the individual. This is of particular importance to consumers of disability support services. While the provision of any service, particularly a disability service, entails a degree of dependence on the part of consumers, Right 3 directs providers to always keep in mind the objective of providing the service so as to optimise the consumer's independence and quality of life. For example, it does not necessarily follow from the fact that consumers require care and support in some areas of their life that they are not capable of participating in a sexual relationship, or making decisions about their sexuality. To make this assumption where it is not appropriate places unnecessary limits on a consumer's independence.

A consumer's needs

Rights 4(3) and 4(4) are also relevant to consumers' independence. Right 4(3) gives every consumer the right to have services provided in a manner consistent with his or her needs. Consumers with an intellectual disability may have many needs, and, as I have just mentioned, the degree of independence they are able to exercise will vary. Accordingly, services should address the consumers' needs, while not restricting their ability to act independently and make decisions for themselves where appropriate. In many cases, especially those involving long term residential care where the provision of service forms such a large and ongoing part of the consumer's life, this will require tailoring of services provided to meet the needs of each individual.

It has been argued by some that Right 4(3) confers a right of access to services consistent with needs. However, such an interpretation is unlikely to be upheld. The Act makes it clear that the Code applies to the quality of services actually provided. It gives no authority for the Code to extend to purchasing decisions. Furthermore, the wording of Right 4(3) itself refers to the "manner" in which services are provided, rather than the fact of provision itself. Accordingly, while any decision to accommodate two consumers wishing to live together, for example, must be made in accordance with the Code, the Code cannot operate to compel the provision of services such as supported or independent accommodation where genuine resource constraints mean none is available.

Minimising potential harm and exploitation

Right 4(4) provides that services must be provided in a manner that minimises potential harm to a consumer and optimises his or her quality of life. This means that actual harm is not a necessary element for a finding that the Code has been breached. Providers must therefore have in place safety management systems by which risks to consumers are identified and managed. A fundamental consideration is the obligation to take all reasonable steps to minimise the possibility of harm to consumers through the abuse or exploitation of their sexuality, consistent with Right 2. This will require providers to adopt a realistic, proactive approach, rather than closing their eyes to the fact that sexual contact may be occurring. Exploitation or abuse of consumers is never acceptable and providers must take reasonable steps to protect those for whom they are responsible.

The best steps to take will include sex education and counselling programmes, and arranging safe and private areas for consumers to express themselves sexually, while also establishing training courses, protocols, and effective communication and assessment techniques for staff. Ultimately, the manner in which potentially exploitative behavior is managed will vary according to the circumstances, and must take into account the affected consumer's emotional, physical, and even clinical needs.

Limitations on the consumer's independence

Although the issues I have just raised emphasise the importance of the consumer's independence, it is clear from the discussion of Right 4(4) that it is important to also acknowledge that there will be times when a consumer's independence must, of necessity, be limited. For example, as Right 4(1) provides that every consumer has the right to have service provided with reasonable care and skill, there may be times when providers must step in if it appears the consumer is incapable of caring for him or herself.

However, the rights in the Code are not absolute. A provider's obligations to give effect to the rights, and comply with the duties in the Code, are qualified by clause 3, which states that providers are not in breach of the Code if they can show they have taken "reasonable actions in the circumstances." Therefore, if circumstances are difficult, the obligation on the provider is to take all reasonable steps to comply with the Code as much as possible in those circumstances. In some cases the protection afforded to consumers in taking such steps may also be consistent with the criminal law, which protects women who by reason of severe intellectual disability are "incapable of guarding [themselves] against serious exploitation or common physical dangers" by making it a crime to have intercourse with them. It is also important to bear in mind that the Code does not override other legislation - such as the Crimes Act - and nothing in the Code requires a provider to act in a manner which would be a breach of any duty or obligation imposed by any enactment, or prevents a provider doing an act authorised by any enactment.

4. Entering into Sexual Relationships - the Consumer's Choice
The capacity to choose and the presumption of competence

Any person with an intellectual disability, once past the legal age of consent, can lawfully choose to have a sexual relationship, be it heterosexual, homosexual, or lesbian. Fundamental to a provider's response to this choice is an assessment of the consumer's capacity to consent to sexual contact and to understand the ramifications of this decision. Providers should also bear in mind that where, for example, a woman is competent to consent to sexual relationships, it is likely she would also be competent to consent to contraceptive treatment. In assessing an individual's ability to enter into a sexual relationship, the provider must avoid the presumption that the person is not capable of freely making such a choice simply because of an intellectual disability, or the requirement for residential care.

This approach is consistent with the changing attitude towards people with intellectual disabilities, which includes the presumption that a person is competent to make and communicate decisions about their personal care and welfare, and understand the nature and consequences of those decisions, unless there are reasonable grounds to believe otherwise. Indeed, this presumption is now recognised in law, in the Protection of Personal and Property Rights Act 1988, and in Right 7(2) of the Code, which states:

Every consumer must be presumed competent to make an informed choice and give informed consent, unless there are reasonable grounds for believing that the consumer is not competent.

This Right should be the starting point for providers dealing with consumers with an intellectual disability who wish to develop a relationship, and is to be read alongside Right 7(3), which states

Where a consumer has diminished competence, that consumer retains the right to make informed choices and give informed consent, to the extent appropriate to his or her level of competence.

Applying the principles of Right 7, the provider must show that a reasonable assessment led to any conclusion that a consumer was not competent to make the decision to enter into a sexual relationship. Indeed, the actual assessment of competency is a health procedure that must be performed with "reasonable care and skill" under Right 4(1). In making this assessment, providers should take into account their own personal knowledge of the consumer, and should also consult with and take into account the views of other suitable persons such family, friends, and support persons. A professional clinical assessment of the capacity of the consumer may also be appropriate.

A case study

Shortly after the commencement of the Code, my advice was sought concerning two individuals, a young woman and man, both with intellectual disability, who had developed a relationship and wished to set up a flat together. The flat would be built next to the young woman's current supported home and the couple would be in the provider's care. The provider's concerns were resolved satisfactorily before I provided comment, but I was able to offer some general advice.

The provider was concerned that the young woman would be required to "prove her competence" before they could allow her to flat with her partner. However, as I have already explained, the presumption of competence in the Code meant that any managerial requirement to "prove" competency would in itself constitute a breach of the woman's rights under the Code. Essentially, the only question needing to be considered was whether the woman had the capacity to understand the ramifications of her choice, and whether there were factors particular to her situation that would create the reasonable belief that she was not competent. In this case, it was difficult to see any reasonable grounds for believing that she lacked that capacity. While it may sometimes be appropriate to seek a clinical assessment to ensure the provider's perception of the woman's capacity was correct, in this case it was unnecessary. As there was no reason to doubt that she was competent, Right 7 gave her the right to make her own decisions about this significant event in her life, and have those decisions met with respect. It would have been contrary to the principles in the Code to deny her wishes.

5. Informed Consent
No health or disability service can be provided to a consumer without their informed consent. Similarly, no-one with an intellectual disability should consent to sexual intercourse without being fully informed of the consequences of such a decision. Accordingly, if consumers intend to become involved in a sexual relationship, it is appropriate to provide them with relevant information about sexual health. Often, in residential care facilities, those who work with and know the consumers on a daily basis are best able to provide this information and will appreciate the way in which this information might be best communicated to them. Once again, the provision of such information is consistent with the Code's requirement to provide services in a manner consistent with the consumer's needs. It also promotes the consumer's independence and dignity.

Informed consent, in terms of the Code, is a process rather than a one-off event. The essential elements of this process are represented by Rights 5, 6 and 7 of the Code. While I do not wish to discuss these rights in detail today, I hope that the following general comments will illustrate the way in which providers might best deal with the issue of informed consent to sexual relationships.

Communicating effectively

Communication about sexual health is usually a sensitive matter, and may be more so where consumers have an intellectual disability. Clearly, particular attention must be paid to the manner in which information about sexual health and relationships is conveyed to consumers.

Right 5 of the Code gives every consumer the right to effective communication in a form, language, and manner that enables the consumer to understand the information provided. Where necessary and reasonably practicable, this includes the right to a competent interpreter. Further, every consumer has the right to an environment that enables both consumer and provider to communicate openly, honestly, and effectively. Creating such an environment for consumers with an intellectual disability might include full, open and frank one-on-one or group discussions or classes, in which an appropriate amount of time is allowed for questions to be asked, and appropriate answers given. It may also involve using culturally appropriate methods of communication; plain language rather than slang terms or medical jargon; written or visual explanations and diagrams or anatomically correct dolls. Often families or support persons may be involved to assist in understanding.

Providing all relevant information

The next essential ingredient of informed consent is to give all relevant information to the consumer under Right 6. The provider must focus on the ability of the consumer to understand the information provided. This will depend on the individual consumer and the particular decision to be made. For example, any decision to start a sexual relationship will normally also require discussing options for contraception. Decisions may also need to be made with regard to the consequences of any pregnancy which results from the relationship.

In this regard it is important to remember that the level of ability necessary to consent to treatment with a high degree of risk or complexity or with serious consequences for the consumer will usually be different from that required to consent to minor and low risk procedures. Furthermore, providers must be aware that each particular decision requires separate informed consent. For example, a provider is required to seek a consumer's separate informed consent to any relationship counselling, accommodation arrangements, gynaecological care, or method of contraception.

Rights of consumers who are incompetent

Right 7(4) of the Code sets out the steps that must be followed before services can be provided to consumers who lack the competence to consent for themselves. If no-one legally entitled to consent on the consumer's behalf is available, then services may be provided only if they are in the consumer's best interests, steps have been taken to ascertain what the consumer would have wished to happen, or, where this is not possible, the views of other suitable persons have been taken into account. While this provision will be of assistance to providers in many situations, it will obviously be of limited relevance to decisions about whether a consumer should participate in sexual relationships as no-one can authorise sexual relations for someone else.

Other legislation may also be relevant to who can make decisions about the care of consumers unable to do so for themselves. For example, the parents or doctors of a woman with an intellectual disability cannot make her take contraception, unless her disability is very severe and meets the test established by the Contraception, Sterilisation and Abortion Act. As you may be aware, under that Act a doctor can administer contraceptives to a woman if her level of disability is such that she is incapable of living an independent life or of understanding the effective use of contraceptives or the need for their use, and if it is in her best interests that they be administered.

In every case it is important to remember that while consumers may not be entitled to consent due to a lack of competence, the Code still gives them rights and protections. Providers must still supply them with information about the procedure or service suitable to their age, maturity and interest, and this information must be communicated in a form, language and manner that enables them to understand.

6. Crimes Act Implications
Another issue which sometimes concerns providers is the possible application of the Crimes Act to sexual relationships involving those with intellectual disabilities. The concern is that by complying with the Code of Rights, the criminal law may be invoked. For those unfamiliar with the Crimes Act, section 138 makes it an offence for someone to have sexual intercourse with a "severely subnormal" woman or girl, knowing or having good reason to believe this to be the case. "Severely subnormal" has been defined to mean "suffering from a subnormality of intelligence as a result of arrested or incomplete development of mind." For the Crimes Act to apply, this must exist to the extent that the woman is "incapable of living an independent life or of guarding herself against serious exploitation or common physical dangers."

While I am unable to give legal advice on the application of the Crimes Act, I would note that the Courts have commented that section 138 is designed to prevent the exploitation of vulnerable people who may be exploited or harmed because they are incapable of resisting or giving their informed consent to sexual intercourse, or of understanding the ramifications of a decision to consent to it. For example, prosecutions brought under this section often involve the alleged exploitation of intellectually disabled women by adult parties who do not suffer from any type of intellectual disability. This is entirely consistent with the Code, which as already discussed requires providers to take reasonable steps to ensure consumers are free from any form of coercion, harassment or exploitation.

This understanding of the Crimes Act, that it is designed to prevent exploitation, indicates that prosecutions were not intended in respect of relationships which are shared between people with similar intellectual disabilities. For instance, in the case study mentioned earlier, both parties had the capacity to consent to and understand the ramifications of their relationship, both their families supported the relationship, and there was minimal risk of exploitation. The couple's expression of their sexual independence, which is protected by the Code, is unlikely to have fallen within the scope of the Crimes Act.

7. The Importance of Sex Education
Finally, I wish to discuss some options for providing appropriate sex education programmes to consumers, the importance of which cannot be over-emphasised. It is always worth remembering that Right 4(3) of the Code requires providers to give service consistent with consumers' needs. For consumers wanting to develop relationships with each other or to explore their sexuality, this will include sex education. Indeed, appropriate sex education courses are an important part of the overall care programme you can offer your clients and their families.

Definite policies and protocols for providing sex education need to be developed by those responsible for co-ordinating care. Along with providing courses which could be attended by all consumers, education should definitely be provided for those who exhibit inappropriate or excessively overt sexual behaviour. So important is the need for education in these circumstances that a provider might legitimately require participation in such programmes as an integral part of the provision of care. Bearing in mind that the safety of other consumers and the obligation to minimise the risk of exploitation and harm is required by the Code, any provider who refuses services on the basis of non-participation in a sexual education programme would be unlikely to breach the Code if their decision is a reasonable one in all the circumstances.

Recently, I investigated a complaint involving the alleged inappropriate sexual conduct of one consumer against another. It became clear that the actions complained of may not have occurred had the consumer concerned actively participated in sexual education and counselling programmes appropriate to his needs. Since puberty, he had a proclivity for making sexual remarks and his parents had repeatedly asked that he receive some form of sex education from the facility responsible for his day to day care.

While policies on education programmes for consumers will go some way towards meeting the Code's requirements, it is also important that the management and staff of residential facilities undertake specific training in this area too. Providers who are themselves trained in recognising at-risk behaviour or developing patterns of sexuality will be better able to provide quality service.

Further to this, Right 4(5) of the Code gives every consumer the right to co-operation among providers to ensure quality and continuity of services. This envisages seamless transition between providers to ensure appropriate care for the consumer, and obliges providers to take positive steps to ensure that their service is properly co-ordinated with that of others. Relevant information - for example, full details of any incidence of inappropriate sexual conduct - should be shared between providers to allow them an adequate picture and history of the consumer's sexual behaviour and relationships, so that quality services and appropriate education programmes can continue to be provided.

8. Conclusion
Clearly, many consumers with intellectual disabilities are able to make their own decisions about many significant aspects of their lives, including their sexuality. The fact that they require the care and support of a residential institution or day care facility does not preclude this. Where consumers are capable of consenting to sexual relationships and understand the ramifications of their decision, it would be contrary to the principles in the Code of Rights to deny them their choice. Indeed, providers who actively promote complementary support and educational services to consumers on such matters will advance consumers' autonomy and independence, and remove the stigma of "difference.".