Outcomes in young adulthood: are we achieving community participation and inclusion?

BACKGROUND: Despite recognition of the importance of integrated community living and support, there is evidence that parents remain the primary caregivers of young adults with intellectual disability (ID). In addition, employment rates remain low in this population. This study aimed to investigate the changes in living arrangements and participation in daytime activities over time in a community population of young people with ID. METHOD: The sample consisted of 536 participants aged 4.0-18.9 years at Wave 1, followed up at Wave 5 when aged 20.5-37.6 years. Information was collected on their living arrangements and daytime activities at both time points, along with living skills and information on community social inclusion at Wave 5. For parents still caring for their adult child with ID, information was also collected on parental ratings of their own mental and physical health, and their satisfaction with the long-term care arrangements for their adult child. RESULTS: A significant proportion of young people were still living with their parents at Wave 5. A greater proportion of those with a severe-profound degree of ID were living in residential care. Parents caring for their adult child reported high levels of mental health problems and dissatisfaction with the long-term care arrangements for their child. A small proportion of young people were in paid employment, and the majority was engaged in structured activities provided for those with an ID. Over one-third of the sample participated in a structured daytime activity for 10 or fewer hours per week, and 7% were not engaged in any structured daytime activity. CONCLUSIONS: These results suggest that adequate provision of accommodation and employment services for young adults with an ID is lacking. In many cases the responsibility of care continues to reside with parents as their children transition from childhood to adulthood. Greater attention is needed to address these issues and facilitate social inclusion and integration for young people with ID.

Functioning and post-school transition outcomes for young people with Down syndrome.

AIM: To investigate the relationship between functioning and post-school day occupation for young adults with Down syndrome. METHODS: Families of young people with Down syndrome (n = 269) aged 15-30 years in 2009 were recruited from the population-based Down syndrome 'Needs Opinion Wishes' database in Western Australia. Questionnaires were mailed to participating families and involved two parts, young person characteristics and family functioning; 203 were returned (75%). Of those families who returned questionnaires, 164 (80.8%) of their young adults had left school. Participation in post-school day occupations was the main outcome and included; open employment, training, sheltered employment or alternatives to employment (ATE). RESULTS: Young adults were reported as participating in open employment (n = 42), training (n = 17), sheltered employment (n = 64) or ATE (n = 41) post-school. Those who reported better functioning in self-care, community and communication skills were more likely to be in open employment and/or attending Technical and Further Education compared with those attending sheltered employment and/or ATE after adjusting for age, gender and rural/metropolitan regions. Current health as measured by visits to a general practitioner (GP) and hospitalizations revealed a weak relationship with post-school day occupations, with increasing likelihood of participating in open employment or training with increasing hospitalizations and GP visits. CONCLUSIONS: Our analysis shows that functioning in activities of daily living was related to post-school day occupation. Current health status and behaviour were found to have a weak relationship with post-school day occupation adjusting for functioning in the final model.

Experiencing rights within positive, person-centred support networks of people with intellectual disability in Australia.

BACKGROUND: This research describes issues related to human rights as they arose within the everyday lives of people in nine personal support networks that included adult Australians with an intellectual disability (ID). METHOD: The research was part of a wider 3-year ethnographic study of nine personal support networks. A major criterion for recruitment was that people in these networks were committed to actively developing the positive, meaningful future of an adult family member with an ID. Data were collected from November 2007 to March 2011 via interviews, participant observations and analysed within the framework of situational analysis. Findings were checked with network members. RESULTS: The issue of rights was challenging to network members. Subtle rights violations could have a major impact on an individual with a disability. Network members worked to protect the rights of people with ID by building and maintaining an empathic and respectful support network, developing the person's self-confidence and autonomy and ensuring that the person with an ID was an active member of the personal support network. CONCLUSION: The maintenance of rights within a supportive environment remains a difficult task. It can be facilitated by a deep knowledge and respect for the person being supported, the promotion of his or her active participation in the planning and provision of support, and an experimental and reflective approach.

The role of informal networks in providing effective work opportunities for people with an intellectual disability.

Being in paid employment is socially valued, and is linked to health, financial security and time use. Issues arising from a lack of occupational choice and control, and from diminished role partnerships are particularly problematic in the lives of people with an intellectual disability. Informal support networks are shown to influence work opportunities for people without disabilities, but their impact on the work experiences of people with disability has not been thoroughly explored. The experience of 'work' and preparation for work was explored with a group of four people with an intellectual disability (the participants) and the key members of their informal support networks (network members) in New South Wales, Australia. Network members and participants were interviewed and participant observations of work and other activities were undertaken. Data analysis included open, conceptual and thematic coding. Data analysis software assisted in managing the large datasets across multiple team members. The insight and actions of network members created and sustained the employment and support opportunities that effectively matched the needs and interests of the participants. Recommendations for future research are outlined.

Penile hygiene: puberty, paraphimosis and personal care for men and boys with an intellectual disability.

BACKGROUND: Supporting men and boys with an intellectual disability (ID) to meet their penile hygiene needs is perhaps one of the least acknowledged but most confronting issues facing care staff. The delivery of intimate hygiene can be a challenging topic particularly as it has been drawn into the emerging sexuality discourse and the ongoing abuse narrative. Compounding this challenge is the lack of guidance in intimate care for support staff. In addition, whereas the male with an ID outnumber the female, female care staff greatly outnumber male staff. Whether this situation affects outcomes for men and boys with an ID is unknown but it is an issue which should be examined. METHOD: This paper reports data from two separate studies, one quantitative the other qualitative, which sought to explore penile hygiene as a male health issue. RESULTS: Results show the practice of care staff to be inconsistent, the views and values of care staff to be divergent. Some patterns and contextual differences were identified depending upon the gender of care staff. An emerging dialogue described some of the positive contributions that male staff make to men and boys with an ID. CONCLUSIONS: The penile health needs of men and boys with an ID are being compromised by a lack of guidance, training, knowledge and limited gender-sensitive care.

Utility, economic rationalism and the circumscription of agency.

BACKGROUND: Great strides have been achieved over the past few decades in service provision for people with intellectual disability (ID). However, there has also been a growth in the use of economic rationalism and a related rise in managerialism in forming service provision outcomes. METHOD: An account of the focus on process and means of provision directed within the managerialist agenda to determine how individual authority has become subsumed within patterns of dependence. RESULTS: An underlying influence of utilitarianism has led to a focus on servicing the average through service provision trajectories which in turn have weakened the pace for social change and perpetuated a vulnerable conception of people with ID. CONCLUSIONS: There has been a qualification of the idealised intent of providing individualised support, choice and recognition of the moral worth of people with ID into relative features of equality. There remains an overriding static conception of the person with ID within funding frameworks and service provision which relies on economic and rationalist depictions of the individual.

International perspective of vocational options for people with mental retardation: the promise and the reality.

Developments in research into the vocational needs and preparation of people with mental retardation were briefly traced over recent decades. The premise was made that the study of vocational programs for this population should be examined in the context of the labor market developments of individual countries. Areas for future research were identified, with specific reference to community-based vocational programs.

Social networks and support mechanisms for people with mild intellectual disability in competitive employment.

Participant observation techniques were used to examine the social networks and the social support mechanisms of nine subjects with a mild intellectual disability working in competitive employment settings. Results indicated that the social networks of this group of people lacked complexity with few interconnections among the network nodes. The major sources of social support emanated from the family and from organizations catering for people with disabilities. While subjects perceived considerable social support within the workplace, this support was restricted to the workplace and in general did not extend beyond it. Implications of the findings of the study for ensuring the adequacy of social support both within and beyond the workplace for this group of people are discussed. Additionally, the need for the development of a theory or model of social support as it pertains to people with a mild intellectual disability employed in competitive employment settings is advocated.

The post-school experiences of young people with a disability.

The transition of young people with disabilities from school to work and adult living has been the focus of attention for the Centre for Educational Research and Innovation (CERI) of OECD for some years. Various member countries of OECD have implemented transition education programmes as a result of community-based educational policies for students with disabilities. To establish a baseline of the post-school experiences of disabled students a follow-up study of a sample of ex-students in New South Wales, Australia, was conducted. While the responses to the survey came essentially from students who had been in special schools and hence may be unrepresentative of the total population of disabled ex-students, the data indicate some interesting trends. Only 42% were in open employment. Those with a moderate or severe intellectual disability were generally in sheltered workshops, activity centres or at home. The majority of respondents indicated that work was an important part of their lives, not so much from an economic perspective, but especially as it afforded them a social outlet. The implications of the findings are discussed in the context of the current emphasis upon community-based rather than sheltered employment for people with disabilities.