Sarah Craig - Academia.edu (original) (raw)
Papers by Sarah Craig
Research in Developmental Disabilities, 2019
Background: International prevalence rates for intellectual disability vary widely with estimates... more Background: International prevalence rates for intellectual disability vary widely with estimates often based on samples. In Ireland people with an intellectual disability are identified in the national census. Moreover, a national register of people receiving or requiring intellectual disability services is maintained and updated annually. Aims: The prevalence rates from the census were contrasted with those from the register along with variations in prevalence across the 26 counties of Ireland. Methods: 2011 and 2016 Census of Population prevalence per 1000 for children (aged 5-19 years) and adults (20 years and over) stratified by the 26 countries were contrasted with similar prevalence in the national register. Publically available data from the 2011 census in Northern Ireland and Scotland were obtained. Results: The Irish census identified nearly twice as many children and adults than were on the national register. Prevalence rates also varied across the 26 counties; more so on the register than the census. The Irish census had lower prevalence rates than Northern Ireland but higher than Scotland. Conclusions: Determining the prevalence of intellectual disability is challenging due to variations in terminology. A national register has advantages over reliance on census data for service planning. 1. Background Intellectual disability is among the most common impairments with children and the number of adults with the condition is thought to be increasing due to longer life expectancy (World Health Organization, 2007). Internationally, attempts have been made to ascertain the prevalence of intellectual disability within countries. The highest estimates have come from low and middle-income countries but even in high income countries prevalence rates have varied from 3.31 to 36.75 per 1000; giving a pooled prevalence rate of 9.2 per 1000 (Maulik, Mascarenhas, Mathers, Dua, & Saxena, 2011). Various methodologies have been used to obtain prevalence estimates but the more reliable are likely to be those based on robust representative samples or better still on total populations (Friedman, Gibson Parrish, & Fox, 2018). However the latter invariably means relying on nationally collected datasets, such as census returns or national registers of persons with the condition (Westerinen, Kaski, Virta, Almqvist, & Livanainen, 2007). Equally such information is also needed to assure the representativeness of samples. Yet a survey of 12 countries covering over 150 population datasets relating to health or education for instance, found that only 25%
Journal of Policy and Practice in Intellectual Disabilities, 2018
Internationally, changes are advocated in the support available to persons with intellectual disa... more Internationally, changes are advocated in the support available to persons with intellectual disability. Socially inclusive personalized arrangements are intended to replace congregated and segregated day services. The study examines the changes in the provision of day services within Ireland over a 5-year period when new policies were being promoted but at time of economic stringencies. Secondary analysis was carried out on data extracted from the National Intellectual Disability Database on all persons aged 18 years and above in 2009 and 2014 who received day services, which were grouped into four main types: care centers, sheltered workshops, employment schemes, and vocational training. Participants in each type of service were profiled by age, level of disability, and living arrangements. Variations in the provision of these services across nine regions were also examined. In 2009, 59% of persons attended care centers, but the proportion had increased in 2014 to 69%. There were reductions in the numbers attending sheltered workshops (down from 23 to 16%) and those receiving employment supports (down from 13 to 11%). By 2014, variations in the numbers attending care centers were evident across the country. The increase in care provision does not accord with national or international policies. Rather, it may reflect ineffective policy implementation strategies and financial cutbacks which services experienced during this period. This study illustrates the value of a national dataset for monitoring policy implementation.
British Journal of Learning Disabilities, 2009
Summary The National Intellectual Disability Database that operates in the Republic of Ireland is... more Summary The National Intellectual Disability Database that operates in the Republic of Ireland is unique in Europe and provides an opportunity to examine trends over time for a total population in excess of 25 000 people with intellectual disabilities and their care arrangements. This paper describes the changes over a 10-year period in the proportion of children and adults living with lone parent carers and comparisons are drawn with demographic changes as reflected in the national census of 2001 and 2006. Since 1996, ...
With improved healthcare, people with intellectual disabilities (ID) are living longer (World Hea... more With improved healthcare, people with intellectual disabilities (ID) are living longer (World Health Organization, 2000), and are requiring a range of services (Kelly, Kelly, & Craig, 2009). In addition, as countries plan community based support services to people with ID and their families, the costs of these services are rising (Organisation for Economic Cooperation and Development, 2006). Many countries are developing services with an emphasis on service user involvement in the planning and evaluation processes of service delivery (e.g. Department of Health & Children, 2001). In addition to service planning, service-based and national datasets and databases are regularly used for research purposes (e.g. the US National Epidemiological Catchment Area Database, Judd & Akiskal, 2003; the Paediatric Intensive Care Audit Network, McKinney et al., 2005). Accurate data, therefore, need to be available to both research teams and governmental agencies to best understand the needs of the target population and to provide and plan person-centered specialist support services (National Disability Authority, 2007). The need to measure and maintain the quality of these data has been highlighted (German et al., 2001).
American Journal on Intellectual and Developmental Disabilities, 2011
Abstract A cohort of nearly 11,000 persons was traced over 8 years to determine those who had mov... more Abstract A cohort of nearly 11,000 persons was traced over 8 years to determine those who had moved from family care and those who had remained. The majority (85%) continued to live with families, and, for two thirds (67%), no future move was deemed necessary. The 2 main predictors of moving were as follows: A need had been previously recorded and the family had used out-of-home respite services during the 8 years. However, just one quarter of those identified as needing to move had done so in the 8 years. Conversely, no prior indication of need had been recorded for two thirds of people who had moved in this period. The complexities of assessing need and equitably meeting demands are discussed.
Research in Developmental Disabilities, 2010
Research in Developmental Disabilities, 2019
Background: International prevalence rates for intellectual disability vary widely with estimates... more Background: International prevalence rates for intellectual disability vary widely with estimates often based on samples. In Ireland people with an intellectual disability are identified in the national census. Moreover, a national register of people receiving or requiring intellectual disability services is maintained and updated annually. Aims: The prevalence rates from the census were contrasted with those from the register along with variations in prevalence across the 26 counties of Ireland. Methods: 2011 and 2016 Census of Population prevalence per 1000 for children (aged 5-19 years) and adults (20 years and over) stratified by the 26 countries were contrasted with similar prevalence in the national register. Publically available data from the 2011 census in Northern Ireland and Scotland were obtained. Results: The Irish census identified nearly twice as many children and adults than were on the national register. Prevalence rates also varied across the 26 counties; more so on the register than the census. The Irish census had lower prevalence rates than Northern Ireland but higher than Scotland. Conclusions: Determining the prevalence of intellectual disability is challenging due to variations in terminology. A national register has advantages over reliance on census data for service planning. 1. Background Intellectual disability is among the most common impairments with children and the number of adults with the condition is thought to be increasing due to longer life expectancy (World Health Organization, 2007). Internationally, attempts have been made to ascertain the prevalence of intellectual disability within countries. The highest estimates have come from low and middle-income countries but even in high income countries prevalence rates have varied from 3.31 to 36.75 per 1000; giving a pooled prevalence rate of 9.2 per 1000 (Maulik, Mascarenhas, Mathers, Dua, & Saxena, 2011). Various methodologies have been used to obtain prevalence estimates but the more reliable are likely to be those based on robust representative samples or better still on total populations (Friedman, Gibson Parrish, & Fox, 2018). However the latter invariably means relying on nationally collected datasets, such as census returns or national registers of persons with the condition (Westerinen, Kaski, Virta, Almqvist, & Livanainen, 2007). Equally such information is also needed to assure the representativeness of samples. Yet a survey of 12 countries covering over 150 population datasets relating to health or education for instance, found that only 25%
Journal of Policy and Practice in Intellectual Disabilities, 2018
Internationally, changes are advocated in the support available to persons with intellectual disa... more Internationally, changes are advocated in the support available to persons with intellectual disability. Socially inclusive personalized arrangements are intended to replace congregated and segregated day services. The study examines the changes in the provision of day services within Ireland over a 5-year period when new policies were being promoted but at time of economic stringencies. Secondary analysis was carried out on data extracted from the National Intellectual Disability Database on all persons aged 18 years and above in 2009 and 2014 who received day services, which were grouped into four main types: care centers, sheltered workshops, employment schemes, and vocational training. Participants in each type of service were profiled by age, level of disability, and living arrangements. Variations in the provision of these services across nine regions were also examined. In 2009, 59% of persons attended care centers, but the proportion had increased in 2014 to 69%. There were reductions in the numbers attending sheltered workshops (down from 23 to 16%) and those receiving employment supports (down from 13 to 11%). By 2014, variations in the numbers attending care centers were evident across the country. The increase in care provision does not accord with national or international policies. Rather, it may reflect ineffective policy implementation strategies and financial cutbacks which services experienced during this period. This study illustrates the value of a national dataset for monitoring policy implementation.
British Journal of Learning Disabilities, 2009
Summary The National Intellectual Disability Database that operates in the Republic of Ireland is... more Summary The National Intellectual Disability Database that operates in the Republic of Ireland is unique in Europe and provides an opportunity to examine trends over time for a total population in excess of 25 000 people with intellectual disabilities and their care arrangements. This paper describes the changes over a 10-year period in the proportion of children and adults living with lone parent carers and comparisons are drawn with demographic changes as reflected in the national census of 2001 and 2006. Since 1996, ...
With improved healthcare, people with intellectual disabilities (ID) are living longer (World Hea... more With improved healthcare, people with intellectual disabilities (ID) are living longer (World Health Organization, 2000), and are requiring a range of services (Kelly, Kelly, & Craig, 2009). In addition, as countries plan community based support services to people with ID and their families, the costs of these services are rising (Organisation for Economic Cooperation and Development, 2006). Many countries are developing services with an emphasis on service user involvement in the planning and evaluation processes of service delivery (e.g. Department of Health & Children, 2001). In addition to service planning, service-based and national datasets and databases are regularly used for research purposes (e.g. the US National Epidemiological Catchment Area Database, Judd & Akiskal, 2003; the Paediatric Intensive Care Audit Network, McKinney et al., 2005). Accurate data, therefore, need to be available to both research teams and governmental agencies to best understand the needs of the target population and to provide and plan person-centered specialist support services (National Disability Authority, 2007). The need to measure and maintain the quality of these data has been highlighted (German et al., 2001).
American Journal on Intellectual and Developmental Disabilities, 2011
Abstract A cohort of nearly 11,000 persons was traced over 8 years to determine those who had mov... more Abstract A cohort of nearly 11,000 persons was traced over 8 years to determine those who had moved from family care and those who had remained. The majority (85%) continued to live with families, and, for two thirds (67%), no future move was deemed necessary. The 2 main predictors of moving were as follows: A need had been previously recorded and the family had used out-of-home respite services during the 8 years. However, just one quarter of those identified as needing to move had done so in the 8 years. Conversely, no prior indication of need had been recorded for two thirds of people who had moved in this period. The complexities of assessing need and equitably meeting demands are discussed.
Research in Developmental Disabilities, 2010