Figure 2 - uploaded by Sarah Craig
Content may be subject to copyright.
Similar publications
The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) is the framework for national policies and practices that respect the rights of people with disabilities. UN and European human rights entities produce reports that could be used by advocacy groups, such as organizations for people with disabilities, to hold governmen...
Citations
... A more recent phenomenon, is that people with an intellectual disabilities are experienced increased longevity (Kelly and Kelly, 2011). Ageing is a great success story, resulting in an older population of people with intellectual disability for the first time (Hilgenkamp et al., 2012a). ...
People with intellectual disabilities (ID) have high levels of sedentary behaviour and co-morbid health conditions. There is also increased longevity for this group which is an incredible success story but one which also poses challenges to the health system. For the first time, the mainstream health system needs to plan for and address age related health needs of people with ID. It also demands consideration of age-appropriate health-promotion efforts to support this ageing population with life-long disability. A physical activity programme, People with Intellectual Disability as Physical Activity Leaders (PPALs), was co-designed and co-developed with older adults (40+ years) with intellectual disability (ID). The process, content and outcomes of the pilot are presented in this paper. Expertise from three sectors: non-statutory academic and people with intellectual disabilities and their supporters worked collaboratively for successful completion of the project.
... The IDS-TILDA sample was drawn from the National Intellectual Disability Database, which collects information on all people with an intellectual disability in the Republic of Ireland who are eligible for or receiving services. 19,20 Details of sampling methods used in earlier IDS-TILDA waves have been reported elsewhere. 21 The study is now over 10 years in existence, and as a number of participants had aged into the older age groups and a number had died (n = 172) or withdrawn (n = 75) from the study, it was decided to refresh the sample for wave 4. In total, 233 new participants were recruited into wave 4, bringing the total participant rate to 739, indicating an overall response rate of 87.1%. ...
Background:
Arterial stiffness has been associated with an increased risk of cardiovascular disease (CVD) in some patient populations.
Objectives:
The aims of this study were to investigate (1) whether there is an association between arterial stiffness, as measured by the Mobil-O-Graph, and risk for CVD in a population of individuals with intellectual disability and (2) whether arterial stiffness can predict the risk for CVD.
Methods:
This cross-sectional study included 58 individuals who participated in wave 4 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Aging (2019-2020). Statistical models were used to address the first aim, whereas machine learning models were used to improve the accuracy of risk predictions in the second aim.
Results:
Sample characteristics were mean (SD) age of 60.69 (10.48) years, women (62.1%), mild/moderate level of intellectual disability (91.4%), living in community group homes (53.4%), overweight/obese (84.5%), high cholesterol (46.6%), alcohol consumption (48.3%), hypertension (25.9%), diabetes (17.24%), and smokers (3.4%). Mean (SD) pulse wave velocity (arterial stiffness measured by Mobil-O-Graph) was 8.776 (1.6) m/s. Cardiovascular disease risk categories, calculated using SCORE2, were low-to-moderate risk (44.8%), high risk (46.6%), and very high risk (8.6%). Using proportional odds logistic regression, significant associations were found between arterial stiffness, diabetes diagnosis, and CVD risk SCORE2 (P < .001). We also found the Mobil-O-Graph can predict risk of CVD, with prediction accuracy of the proportional odds logistic regression model approximately 60.12% (SE, 3.2%). Machine learning models, k-nearest neighbor, and random forest improved model predictions over and above proportional odds logistic regression at 75.85% and 77.7%, respectively.
Conclusions:
Arterial stiffness, as measured by the noninvasive Mobil-O-Graph, can be used to predict risk of CVD in individuals with intellectual disabilities.
... The IDS-TILDA sample was drawn from The National Intellectual Disability Database (NIDD), which collates information on all people with an ID in the Republic of Ireland who are eligible for or receiving services. 32,33 A random sample of 1600 people aged > _40 years was identified from the NIDD and invited to participate in Wave 1 of the IDS-TILDA study. An age of > _40 years was selected because of the lower life expectancy for some individuals with ID and earlier onset of age-related morbidities in this population, e.g. ...
Aims
Hypertension is a leading risk factor for cardiovascular disease, accounting for almost 50% of ischaemic heart disease mortality. This study aims to identify the prevalence, awareness, treatment, and control of hypertension and their predictors in older adults with an intellectual disability (ID).
Methods and results
This cross-sectional study utilized data from the ID Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). Participants were drawn from the nationally representative sample and included those who completed the self/informant report measures, in addition to objective blood pressure (BP) measurement. From the 551 individuals with ID, aged ≥40 years, hypertension prevalence was 35.2% [95% confidence interval (CI) 31.2–39.2%]. Of those with hypertension, 44.3% (95% CI 37.1–51.5%) were aware of their hypertensive status, and 64.2% (95% CI 57.3–71.1) were taking antihypertensive medication. Among those on treatment, 70.8% (95% CI 61.8–78.2%) had their BP controlled to below 140/90 mmHg. Significant predictors of awareness were age (P = 0.036) and level of ID (P = 0.004), predictors of treatment were age (P = 0.002), level of ID (P = 0.019), and diabetes (P = 0.001). Both diabetes and female gender were predictors of control of hypertension (P = 0.013 and P = 0.037, respectively).
Conclusion
The prevalence of hypertension in older adults with ID was lower than reports for the general Irish population, with overall levels of treatment and control, when identified, higher in the ID population. There was under-treatment and lower levels of awareness among those with more severe ID, which requires addressing. The finding, that when diagnosed, people with ID respond well to treatment should encourage addressing the under-treatment found here.
... Critically, people living with a mild intellectual disability are likely to have fewer supports, be under represented in statistics, and may outlive their carers. The implications for appropriate future planning around aging with an intellectual disability, therefore, cannot be ignored (Kelly & Kelly, 2011). ...
Life expectancy is increasing for people with intellectual disability, many of whom live with family. While there has been research about aging and future planning, there is limited evidence about the characteristics of the caregiving relationship. The aim of this study was to examine perspectives of caregiving for older people with intellectual disability and their family. A constructivist grounded theory approach was used, and 19 people with intellectual disability and 28 family members were interviewed. Caregiving was informed by transitions across the life course. Three interrelated concepts, Riding the Waves, Shifting Sands—Changing Tides, and Uncovering Horizons comprise the core components of the theoretical model—Navigating Ever-Changing Seas. This model informs complex, trans-generational relationships that impact decision-making for people with a long-term condition. Applications within health care indicate a need for systems to include individuals and their networks of care in policy, practice, research, and service delivery across the lifespan.
... According to the National Intellectual Disability Database (NIDD) Report 2007 (Kelly, Kelly & Craig, 2007), 9% of young people attended rehabilitative training, 6% were in supported employment, 2% were enrolled to vocational training, and only 0.9% had transitioned into employment. Data indicates that nobody over the age of 18 years at that time had transitioned to further education. ...
... Information from the regions (excluding identifying details) is made available to the Disability Databases Team in the Health Research Board that manages the database on behalf of the Department of Health and which undertakes analysis of the anonymized data at a national level. An annual report is produced that provides details of the characteristics of persons with an intellectual disability within the state, the services they receive and those they require in the future (Kelly, 2015). ...
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.
... No studies have been conducted on the coverage of the database, but the willingness to register for organised services is presumed to be high. In data from 2009 (Kelly et al. 2010), the peak prevalence (1.00%) was reached in the age group 10-14 years, but in previous years' analyses the peak prevalence was more often in the age group 15-19 years. After the peak value, the prevalence has decreased: in the 2009 data, there was another minor peak in the age group 35-54 years, but in the data from 1999 to 2006 the decrease has been continuous. ...
The thesis includes a broad literature review of previous prevalence studies of intellectual disability (ID) and discusses several reasons of differences in the estimates.
An estimate of the prevalence of ID in Finland is provided based two national register surveys. Besides a cross-sectional estimate, a longitudinal view is also available.
In sum, the prevalence of ID in Finland is ca. 1 %.
... According to the National Intellectual Disability Database (NIDD) Report 2007 (Kelly, Kelly & Craig, 2007), 9% of young people attended rehabilitative training, 6% were in supported employment, 2% were enrolled to vocational training, and only 0.9% had transitioned into employment. Data indicates that nobody over the age of 18 years at that time had transitioned to further education. ...
The Progressing Accessible Supported to Employment (PASTE) project investigated the
concept of supported transition for school leavers with intellectual disabilities, as a means of accessing mainstream opportunities in further / higher education, training, and employment (FETE). The study was undertaken by two researchers from Dublin City University, Ireland, across 2017 and 2018. This study investigated outcomes for school leavers with Intellectual Disabilities, who engaged with the WALK PEER supported transition model during their final two years in school. The research process focused on: a) capturing the viewpoints of students attending two special schools, their parents and carers, recent school leavers, and education professionals, and b) measuring employer viewpoints and engagement with the WALK PEER model between August 2015
and February 2018.
... The mental health needs of people with ID are also evolving. Increasing numbers are living into older age (Kelly and Kelly, 2011). In addition to elevated rates of dementia, particularly in those with Down syndrome (McCarron et al., 2017), older adults with ID have particularly high rates of complex multi-morbidity (McCarron et al., 2013). ...
Purpose
The purpose of this paper is to outline the historical background and policy context of mental health services for people with intellectual disability (ID) in Ireland. It then considers recent implementation and lessons from the Irish experience.
Design/methodology/approach
The policy background and research literature relevant to the development of mental health services for people with ID in Ireland was reviewed and discussed.
Findings
Mental health services in Ireland remain in a state of change, moving towards the implementation of specialist multi-disciplinary teams in the community, alongside previous models of care and service.
Research limitations/implications
This paper summarises recent advances and research regarding mental health services for people with ID in Ireland.
Practical implications
The paper illustrates the process of delivering changes to mental health services with practical implications for mental health services internationally.
Originality/value
This is the first paper in many years to summarise the development of mental health services for people with ID in Ireland. There has been considerable recent change and it is therefore important to provide a useful reference for the current status of services.
... What is known about parents with intellectual disabilities comes from social care or disability agencies where parents are known to service providers (Booth 2002;Llewellyn 2005). Very little is known about intellectually disabled parents who have not been identified or referred to the service system (Tarleton 2006), which may also be true of intellectual disability figures more generally (Kelly 2007). What is known mostly comes from studies that focus on mother and child. ...
Background:
Research suggests that the number of intellectually disabled people with children is increasing. Intellectual disabilities do not inevitably cause parenting difficulties, but it may impact on an individual's capacity to parent a child effectively. Children of parents with intellectual disabilities may be at increased risk of neglectful care, which could lead to health, developmental and behavioural problems, or increased risk of intellectual disability. Compared with other parents, those with intellectual disabilities are more likely to be involved in care proceedings.
Objectives:
To assess the effectiveness of parent training interventions for parents with intellectual disabilities designed to support parenting, parent-child relations, safe parenting or family environments, or to develop parenting skills.
Search methods:
In July 2017, we searched CENTRAL, Ovid MEDLINE, Embase, CINAHL and six other databases as well as two trials registers. We also searched reference lists of included studies and contacted experts in the field to identify additional ongoing and unpublished studies.
Selection criteria:
Randomised controlled trials (RCTs) and quasi-RCTs comparing parent training interventions for parents with intellectual disabilities with treatment as usual or a control group.
Data collection and analysis:
We used standardised Cochrane methods.
Main results:
As of July 2017, we identified four trials with 192 participants that met the review inclusion criteria. Participating parents were mostly mothers (seven fathers were included in two studies), and children's ages ranged from one month to six years and five months.One study was conducted in Australia, one in Canada, one in the Netherlands, and one in the USA. Each studied a different intervention and considered different outcomes. Three interventions were delivered at home, and one in a community venue (e.g. a church). Interventions varied in duration from seven weeks to 12 months. They included a range of practical childcare skills, home safety and developing parents' ability to respond sensitively to their children. Parents in the comparison groups included in the review received treatment as usual and most of these received the index intervention after the study was complete.One study was funded by the Ontario Mental Health Foundation and the Ontario Ministry of Community and Social Services Research Grants Program; one by the Alabama Development Disabilities Council; one by the Best Practice Parenting Education Initiative of the Commonwealth Department of Family and Community Services and the New South Wales Aging and Disability Department; and one by ZonMw, The Netherlands Organisation for Health Research and Development.It was not possible for us to conduct a meta-analysis. The GRADE quality assessment varied from very low to moderate across the studies.Primary outcomesNo study reported on the 'attainment of specific parenting skill targets'.'Safe home practices' and 'understanding of child health': one study (30 parents, very low-quality evidence) reported some improvements in parents' knowledge of life-threatening emergencies, ability to recognise dangers, and identify precautions, in favour of the intervention group. It also found limited, very low-quality evidence that parent training improved parents' ability to understand child health, implement precautions, use medicines safely, recognise child illness and symptoms, and seek medical advice (i.e. visit the doctor). Another study (22 mothers, very low-quality evidence) reported improved attainment of skills related to childcare and safety, in favour of the intervention group.Secondary outcomes'Parent-child interaction': one study (40 mothers, very low-quality evidence) reported improved maternal-child interaction following parent training at 12 months follow-up. Another study (83 mothers, 2 fathers, moderate-quality evidence) reported that inclusion in the intervention group led to a steeper decline in parenting stress related to the child compared to the control group.'Parents' retention of child': one study (22 participants; very low-quality evidence) reported that before joining the programme nine of 11 (82%) families with a previous child had had the child removed from their care by child protection authorities due to maternal maltreatment, compared with only four of 22 (19%) families after participating in the programme (only one of these four mothers had also had a previous child removed).No study reported data on: 'return to independent care of child' or 'lifting of child-related court order'.
Authors' conclusions:
There is some very low-quality evidence that some parents, mainly mothers, with intellectual disabilities are able to provide adequate parenting if they are given appropriate training and support to learn the parenting skills they need. However, there are few studies exploring how interventions might work, for whom and in what circumstances. In particular, there have been few studies that include fathers with intellectual disabilities, or that explore the views of parents themselves.There is a need for larger RCTs of parenting interventions, with longer follow-up, before conclusions can be drawn about the effectiveness of parent training for this group of parents.
