Miriam Taylor

Psychiatric care of adults with intellectual disabilities: changing perceptions over a decade.

Objective: In light of developments in training and service provision, the aim of the present study was to compare two state-wide surveys, undertaken in 1994 and in 2004, of psychiatrists about their perceptions of their training and psychiatric treatment of adults with intellectual disabilities who also have mental health needs. Methods: A 50-item self-administered questionnaire was developed for the 2004 survey, based on the 1994 study. This was sent to all 624 Fellows of the Royal Australian and New Zealand College of Psychiatry registered in Victoria at the time. A series of questions was asked based on workload, training, the role of psychiatry in intellectual disabilities, opinions on assessment and management, improving services, and the demographics of participant psychiatrists. Results of the 2004 survey are compared with the 1994 study. Results: There has been some change in psychiatrists’ opinions about acute admission wards, believing strongly that they do not meet the needs of the adults with severe intellectual disabilities, leaving them vulnerable to exploitation. There has been some improvement in their ability to adequately manage adults with intellectual disabilities who have mental health needs and/or problem behaviours. Conclusions: Mainstream mental health services fail to meet the needs of adults with intellectual disabilities. Improved specialist clinical services and more clinical training opportunities are required.

Sterilisation, drugs which suppress sexual drive, and young men who have intellectual disability

In 1992, the High Court of Australia ruled that all procedures involving the sterilisation of children (other than to treat some malfunction or disease) should be referred to the Family Court of Australia. There has been recent public debate about the sterilisation of young women who have intellectual disability. However, there appears to be very little known about the sterilisation of young men who have intellectual disability. Health Insurance Commission figures indicate that vasectomies and perhaps bilateral orchidectomies are occurring for some young Australian males under 19 years of age, some of whom are under nine years of age. In addition, the use of drugs to alter sexual behaviour in young men with intellectual disability remains controversial. Concerns include sexual behaviour, aggression and other aspects of human relationships of young men with intellectual disabilities. This paper reports on 51 responses to a request for information about sterilisation, drugs and young men who have intellectual disability in Australia. Several issues, including the influence of attitudes and the need for informed decision making are raised.

Diabetes, To the Point: Designing a website about diabetes for adults with intellectual disability and carers

Objective: In this paper we describe the design of a website based on written information about diabetes for people with intellectual disability and their care providers. Methods: The design process was collaborative with adults with intellectual disability, care providers, and professionals. The design followed the W3C Guidelines - Accessibility Guidelines Double A. Results: Preliminary results are promising and the site is having about 850 pages accessed per month. Conclusion: The consultative and design processes used resulted in a unique and acceptable educational tool for people with intellectual disability who have diabetes and their care providers.

The Legal Trends‐‐Implications for Menstruation/Fertility Management for Young Women who have an Intellectual Disability

Since 1988, there have been a number of Family Court of Australia cases where permission was sought for a hysterectomy (surgical removal of the uterus) to be performed on premenarchal women who have an intellectual disability. The case judgments refer to several cases from appellate overseas courts. While the judgments indicate a division of judicial opinion on the issue of the necessity of court consent for such surgery on this group of young women, all of the judges sanctioned a premenarchal hysterectomy. This paper will review the cases with specific reference to relevant Australian legislation, and the implications for women who have an intellectual disability which may have international applicability.

An Introduction to Menstrual Management for Women who have an Intellectual Disability and High Support Needs

Abstract This paper describes a project researching the management of menstruation for women who have severe or profound intellectual disability (high support needs). Its mandate was to develop materials, processes and resources to support menstrual management for women who have high support needs. Intervention processes are described via an illustrative case study. The impact of care providers’ attitudes on menstrual management for these women is considered. Partial participation in menstrual self‐care is discussed. Reference is made to a ruling by the High Court of Australia which requires the consent of the Family Court of Australia for surgeryresulting in sterilisation of young women under the age of 18 years.

Increasing medical students' awareness of barriers to comprehensive healthcare in adults with intellectual disability

Aim: This study investigated: (1) concurrent relationships between measures of family life and parental satisfaction with life in parents of an adult with Down syndrome and (2) influence of early family functioning on current parental satisfaction. Method: Sixty-two families were interviewed using a semi-structured interview, and responded to a series of questionnaires related to family functioning when their child with Down syndrome was between 7 and 15 years. Fifteen years later parents were asked to provide data on their current situation, including mental health, and satisfaction and difficulties with respect to care-giving in relation to their adult child. Results: Over half the families provided data to the second phase of the study. Life circumstances were appreciably worse for a small group of families than had been the case 15 years previously; however, these changes were generally unrelated to their parenting role. Overall, parents reported experiencing satisfaction from their care-giving role and did not report high levels of difficulties emanating from this role. Conclusions: Most parents demonstrated good levels of personal functioning, although there was a small group for whom this was not the case. Earlier functioning did not make a strong contribution to current levels of life satisfaction.