Human dignity is acknowledged by Perske (1972): ‘You have a right to live as other fellow human beings. Live, even to the point where we will not take all dangers to your life away from you.’ In any person’s attempts to build close, creative human relationships, there is risk and chance of failure, hurt and pain; people with learning difficulties cannot be shielded from those aspects of personal development.
The Irish Sexual Education Network (ISEN), founded in 2002 and following the work of the Sex Education Working Group which was active in Ireland in the nineties, has a primary aim to promote professional standards and best practice in the area of sex education for those with disabilities, with particular emphasis for those with intellectual disabilities.
In an attempt to understand the current picture of Relationships and Sex Education (RSE) in Intellectual Disability Services in Ireland, ISEN received funding for research through a grant received from the National Disability Authority and the Crisis Pregnancy Agency. The research was completed by the Sexual Health Centre, Cork and published by ISEN in 2007.
The report contains a broad review of international literature with recommendations of good practice from research and experience abroad. The brief summary of the findings below is to help identify needs amongst service staff, with regard to training, support and ongoing development in the area of relationships and sex education, as well as providing some direction for future research possibilities.
Self-completion questionnaires were sent to 152 disability service providers across Ireland. Owing to the potentially sensitive nature of the subject matter, confidential questionnaires were used to encourage honest responses. Questions were a combination of pre-coded, closed, filter and open-ended questions and respondents were also invited to be involved in a follow-up telephone interview to express further views on the issues raised in the questionnaire. Telephone interviews drew out specific points from the responses made.
- There is no national structured approach to the provision of RSE to people with intellectual disabilities.
- Just over three quarters (78%) of respondents had no in-house training policies in relation to RSE delivery.
- Just under three quarters (71%) of respondents indicated that their service did not provide RSE to its users. Only a quarter (25%) of respondents reported that some form of RSE was delivered.
- Just over half (57%) stated that in-house trainers delivered training. A further 14% indicated that outside agencies delivered the training and 29% used a combination of both inside and outside trainers and agencies.
- Of those currently delivering RSE programmes, the majority (80%) said they had received some form of training to assist them in delivering programmes. However the majority had just undertaken a 1 or 2-day course.
- Despite the poverty of training opportunities, 28 (90%) of staff who were delivering programmes felt comfortable in doing so and 23 (75%) felt competent to do so.
- Considerable interest was expressed in receiving training. 78% of these not currently offering programmes expressed an interest in undertaking training in RSE facilitation, while a further 16% would like to receive information only.
- When asked who was most appropriate to deliver training, 26% of respondents thought that it should be frontline staff, 39% multidisplinary staff and 35% RSE trainers.
- A majority of respondents (74%) felt that RSE was important for all service users. A further 21% felt RSE to be important for some users. There was a non-response rate of 4%
The report concluded that:
- Policies and guidelines for Relationship Sexuality Education must be developed by all organisations in the field of intellectual disability in order to promote the delivery of standard good practice both at individual and institutional level.
- Organisations have a responsibility to provide service users with intellectual disabilities with accurate and appropriate RSE which promotes positive attitudes toward sexuality, increases confidence and self-esteem and which focuses on ability.
- Assistance needs to be provided for parents/carers so that they can provide support and explore their own attitudes and values.
- Resources need to be available for people with intellectual disabilities, staff and parents and carers.
- Training and development opportunities and programmes need to be provided for staff. Evaluation of such programmes needs to be provided and embedded as an essential component of their implementation
- A national approach needs to be adopted to provide policies and guidelines promoting models of good practice and creating structures which can be maintained.
- Further research into the needs, practices and feeling of people with intellectual disabilities needs to be undertaken.
- In terms of policy and organisational input, there is a need to develop clear policies and guidelines, which are evidence-based, to support staff and help build effective services. In addition and alongside the policies, staff development in the area of RSE is essential. Staff training and good practice models would increase confidence and competence and encourage wide collaboration.
- For people to grow in intimate relationships, they must be involved in a system with which they are comfortable. Through advocacy, self-advocacy and guardianship, an environment conducive to wholesome growth through personal relationships should be actively promoted amongst all.