RESPECT: Relationships: Ethics: Sexuality: Person-centered: Education: Consent: Training

Anne McCarthy, Director of Research, Stewart’s Hospital Services

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THE RESPECT SYMPOSIUM took place on 5–6 November 2003 in Killarney and was sponsored by the National Federation of Voluntary Bodies, in partnership with The Irish Sex Education Network. This was an excellent and ground-breaking conference with over sixty speakers.

The relationship aspect of choice, personal freedom and the right to do your own thing was the primary focus of the two intensive days. It was great to see so many members of the legal profession from England, Scotland and Ireland present, together with a wide range of service providers, parents and self-advocates. What was so refreshing about this symposium was the feeling that you were actually getting somewhere, and that something tangible might actually be achieved. The essential ingredient to an event such as this was getting world-class, very specific subject-focused speakers and strategic session sequencing.

Opening session

Participants were privileged to listen to the distinguished Professor Hilary Brown deliver her customary punch lines in the opening plenary session entitled Rights and Responsibilities, which guaranteed to focus, motivate and commit them to two days of extensive, ground-breaking thought-provoking discussion.

Professor Brown suggested that failing to provide ordinary independent lives is not protection—it is laziness. She noted that safe, regulated and exciting services need to be provided and protection would incorporate real risks, while working towards positive options. Professor Brown emphasised that expression and protection were not alternatives and that people need both for self-esteem and identity. She then posed the question: What risks do people with intellectual disability face in their sexual lives? The answer was the ordinary risks and exposure to personal and sexual violence, or discriminatory or inadequate service provision or failure to access health care. However, she also noted that it is also abusive to prevent people from having wanted, understood and consenting sexual relationships. Professor Brown indicated that new sexual offences legislation balances protection of rights to private life with the need to protect the person from abuse and exploitation.

Legal issues and consent

It was encouraging to listen to the next session, as so many representatives of the law were involved in finding solutions to all the multifaceted issues on the agenda. Commissioner Patricia T. Rickard-Clarke of the Law Reform Commission chaired this session. The advantages of not being in the front line of legislation became apparent when we learned about The Adults with Incapacity [Scotland] Act 2000 and the proposed UK Mental Incapacity Bill at present under discussion. There were many positives to emanate and certain experiences to avoid with the benefits of hindsight. The Scottish legislation took fifteen years to draft, preceded by ten years of lobbying.

Two excellent features in the Scottish legislation were that it offered gateway principles that ensured that decisions should be specific to the individual, should benefit the person, use minimum intervention, take account of the person’s wishes and support the service user in making decisions.

Much was learned from the Scottish experience regarding framing such legislation in our Irish context.

Coffee was followed by the Non-legal Consent Guidelines which are all about person-centredness and individualizing services and supports. The challenge is that the service provider’s need for order, standards, timetables, five-year plans etc is challenged by the very notion of person-centeredness because people’s lives are messy—not arranged in neat boxes. Western Care told us about measuring organisational responsiveness to the individual. Person-centered services involve a process of constant change management. The question for all service providers is: Is the organisation working to achieve what is important to the individual?

Ann Nally pointed out that systems need to be designed in a way that is fluid and flexible, allowing the staff to connect the work that they do every day to what is important to the person/people with whom they work, but that they also have enough structure to ensure there is sufficient scaffolding to support them in their efforts to plan with people.

Making decisions and choices

There was so much in this symposium that a comprehensive report would use up an entire issue of the magazine. I hope the reader will settle for bullet points devised to make good terms of reference. However, I must mention an outstanding contribution by the solicitor Richard Kramer of Turning Point and the UK Making Decisions Alliance. Mr Kramer pointed out that legal definitions of capacity to consent bear little or no resemblance to how ordinary everyday decisions are made. They emphasise intellectual capacity, but exclude factors such as the timing of a decision, the environment and communication methods. All these factors can affect the individual’s ability to make decisions. A legal approach neglects how we can actually support and empower people to make decisions that they are capable of making. We should ensure that the person’s own decision-making and method of communicating it are supported first. This involves examining how we can maximise decision-making and providing the support for people to make those choices.

Some common principles would be respecting individuals, supporting decision-making, advocacy and supporting communication.

Having choice is at the heart of decision-making. The ability to choose, or choice, is only real when there is a range of options for people. These alternatives need to be meaningful. If neither option is desirable or if one option is vastly superior, a person is unlikely to experience choice. For example, it is not a choice if the only daytime activity that is offered is going to play bowls or nothing at all. If there are a number of attractive options to choose from, people perceive themselves as having greater scope for choice and self-determination.

Seeking consent should be part of a respectful relationship with people with intellectual disabilities. It is a process, not a one-off event. People should have the time and support to make a decision and the time to explore and understand different options. An excellent yet simple example of organising the environment to highlight options is always serving tea in white mugs, coffee in red mugs and cold drinks in plastic beakers. Using pictures and objects, rather than words, to ensure maximum information and understanding. Advocacy support should focus on choices that are important to the individual.

Choice is influenced by a range of factors, including whether or not it can be reversed and how difficult it might be, its likely impact on valued aspects of the person’s life, its duration and likely consequences. But supported decision-making should not be something that is saved for big decisions. It is a way of supporting people in everyday life. A person who is unaccustomed to making his/her own choices day by day is less likely to be able to deal with more complex decisions. We must not allow supported decision-making to be a tool only for momentous occasions. Trusted relationships that support people should be at the heart of the process.

Exploring these non-legal issues around consent emphasised the need for a rights-based approach to any future legislation. We need to talk about mental capacity, not incapacity legislation.

Self-advocate Marie Wolfe from Galway discussed the service user’s perspective on consent. All speakers pointed to the one pivotal point that cannot be denied any longer, i.e.

Service-led paradigms and mindsets need to change fast, and rights-based legislation and support structures need to be in place.

Workshops continued for most of Day 2. However, Professor Hilary Brown opened the day with another stimulating address in which she applied what we had learned the day before to sexuality. The problems of managing mixed messages given in care relationships were just one of the multifaceted issues she covered in a very short time. Professor Brown indicated that sex education is just at the beginning. She offered the following framework to assess progress in this area:

LEVEL/STAGES

PREPARATIONACTIVITYFOLLOW THROUGH
INDIVIDUALSex Ed.
SERVICE
STRUCTURE

She illustrated that levels two and three are rarely achieved in either direction and that all the above squares need to be filled in if we are even to begin to meet the objectives discussed at the symposium. She concluded by giving us the 6 Rs:

  • Rights-based services
  • Role models visible
  • Responsible roles for service users
  • Range of services offered
  • Roles for staff based on assistance, NOT care
  • Review [powerful mechanisms for review and evaluation].
Workshops

Workshops were lengthy, substantial and well themed, they included:

  • Interventions and Supporting Safety (Attended by the author who found them excellent and very down-to-earth).
  • Sexuality and Relationships and Sex Education Practice (see special report by Kathy O’Grady Reilly)
  • Holding and Sharing of Information and Implementation Strategies.

Symposium participants eagerly await the publication of the symposium report in order to access details of the workshops they were unable to attend.

The Interventions Workshop focused on the legal aspects of consent to intrusive interventions, making the excellent point that educating decision makers is as important as changing the law. A good tribunal-like system with expertise in this area will not automatically listen to what doctors say—it is about getting the individual into the culture of decision-making. Communication mechanisms are of primary importance to this process.

Important points concerned person-centered planning, which must prevail in every fibre of the person’s life. It was emphasized that intrusive interventions often involve the controlling of consequences.

The Supporting Safety Workshop focused on prevention from harm and abuse issues. The questions posed was what are the key issue is primary prevention and how can suitable processes to organize them be set in place? It was sobering to note that 75% of cases of harm and abuse are connected with the services; speakers stressed that abuse existed in all our services. Men with intellectual disability are equally as vulnerable as females–50/50- It was emphasised that the role of management needs to be cohesive, integrated and multidisciplinary in this regard.

The following points were made: If children come first, why not vulnerable adults second? There is an urgent need to move from detection to surveillance and prevention.

Examples of important matters relating to this issue were:

  • Staff recruitment procedures
  • Telling service users what their rights are
  • Training in recognising the signs of abuse
  • Under/delayed reporting

The areas of practice most likely to expose people to abuse where there is/are:

  • Imbalance of power
  • Multiple carers
  • Exposure to more people in the community generally
  • Intimate care needs

Recommendations were:

  • There should be core groups dealing with these issues
  • Training in recognising abusers and situations that abuse
  • Discriminating between abuse and neglect is contentious.
Closing session

A positive indicator of the symposium’s success was the full auditorium at the closing session. Key points were as follows:

  • Rights need to be balanced = opportunity / protection.
  • Legislation is unlikely to provide answers
  • Need for guidelines for vulnerable adults
  • No clear answers or distinction between rights and risk
  • Person-centered planning turns rights into an outcome
  • Frontline staff are an important and vital voice
  • No either/or about it – we must address these issues.
  • The NDA national standards and the ‘Sustaining Progress’ document have a commitment to strategic review of services for people with disabilities
  • Ireland already has the construction of a National Policy Document Disability Bill – Why not an Ability Bill?
  • People have rights to expression, protection and safety
  • Law reform—serious legal concerns regarding present legislation
  • National alliance with Law Reform Commission
  • There are wonderful gateway principles in the Scottish Act

But, legislation is not the panacea – What do we do?

  • National Guidelines and policies that are rights-based and person-centered and that deliver for service users.
  • A national template would reduce the work and avoid duplication and waste
  • Sex education programmes for families, service users and staff.
  • Partnership with families
  • Training of sex educators
  • Management of abuse
  • Sex educators must have management behind them
  • Options and choices – service users and social opportunities.
  • Communication
  • Supported decision-making
Outcomes

This symposium will be judged on its outcomes. Key factors in working towards these outcomes were set in place with agreement on:

  • Working together
  • Legislative and political commitment
  • Staffing retention: making caring professions attractive
  • Multi-agency guidelines and templates [process very good]
  • Agreement and arrangements made to discussions between National Federation, parents, service users and DoHC.
  • Mindsets of directors to be addressed
  • Fundamental structural review of our service providers
  • The symposium was the beginning of something (the word had been carefully chosen).

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