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Creating inclusive health systems for people with intellectual disabilities: an international study
- Authors:
- McCONKEY Roy, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 17(4), 2020, pp.282-290.
- Publisher:
- Wiley
Background: Creating equitable access to mainstream health and healthcare service has been promoted as a means of addressing the health disparities experienced by people with intellectual disabilities (ID) globally. Specific Aims: This study addressed two questions: What strategic actions are most likely to bring about inclusive primary, secondary, and tertiary health systems for people ID? What are the system indicators that can be used to evidence a reduction in health disparities for this population? Method: A four‐phase study was undertaken involving an international expert advisory group, literature reviews, and individual interviews with 16 key informants from Special Olympics (SO). These led to an online international survey in which 61 respondents rated the relevance and feasibility of 30 strategic actions and system indicators to promote inclusive systems and reduce health disparities. Findings: All the strategic actions and system indicators were endorsed as relevant but less so for the feasibility of implementing them. Top‐rated strategic actions included the availability of policy statements and practice guidelines on making reasonable adjustments, mandatory training of health professionals on ID, and their involvement as cotrainers in staff training. Discussion: Implementing these strategic actions and system indicators will be a major undertaking and one that is unlikely to be speedily achieved given the many different policy and health systems that exist even within a locality as well as nationally and internationally. Nonetheless, the identified actions and indicators from this study can form the basis for improved access to health and for advancing the human rights of persons with ID. (Edited publisher abstract)
Inequalities in respite service provision: insights from a national, longitudinal study of people with intellectual disabilities
- Authors:
- McCONKEY Roy, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 23(1), January 2010, pp.85-94.
- Publisher:
- Wiley
Using data from a national database in Ireland of around 16,000 people with learning disabilities living with family carers, the availability of overnight respite provision was monitored over an 8-year period along with the recorded needs for such services. Despite marked rises in the number of people receiving respite breaks resulting from increased government funding, there were marked inequalities in the availability of provision across the country. In recent years the inequalities decreased but still remained. The proportion of families requiring breaks also rose and a similar pattern of inequalities were found here too. This study highlighted some of the complexities in reducing inequalities in the provision of respite services and in identifying the need for them. It would be advantageous to develop more explicit criteria regarding the need for respite provision and to record the family's preferences for the form this provision might take. These adjustments would add to the value of any national database as a service planning tool.
Family carers of adult persons with intellectual disabilities on the island of Ireland
- Authors:
- BARRON Steve, McCONKEY Roy, MULVANY Fiona
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 3(2), June 2006, pp.87-94.
- Publisher:
- Wiley
Many families provide lifelong support to their relative with an intellectual disability. However, relatively little information is available for national populations on the characteristics of the people for whom these families care and the supports they receive or need. A database of all persons in receipt of intellectual disability services has been operating in the Republic of Ireland since 1995 and records details of those living with family carers. In Northern Ireland, regional databases provide similar information. Using both sources, data were obtained on over 12,500 people living with family carers; half of whom lived with two parents, around 30% with a lone parent, and just under 20% with another relative. More people in Northern Ireland were identified as living with family carers, which was attributed mainly to less available residential alternatives. Only a minority of carers received respite breaks and domiciliary supports although higher proportions required them. The authors conclude that family care arrangements have received relatively little attention within government policy making, and hence service provision has been largely reactive. Future research should focus on the changing needs of carers over time and how they can be better supported in their role.
Information needs of parents about learning disabilities
- Author:
- McCONKEY Roy
- Journal article citation:
- Journal of Learning Disabilities, 7(3), September 2003, pp.211-219.
- Publisher:
- Sage
A survey of over 400 parents and carers of children and adults with severe learning disabilities was undertaken in N. Ireland. The aim was to identify the persons approached by the parents, the information required and the means used. The data are relevant to the setting up of national information centres as proposed by the government. The most common informants were social workers, staff in schools and centres, and GPs, but little use was made of voluntary services. A similar pattern was found regarding future informants. The most common topics were available services, leisure and holidays, and benefits. Parents of children under 10 were more likely to want information on education and therapies. The preferred means of getting information was through face-to-face contacts in the home.