Disability In Ireland Research Articles

A case-study of policy change in residential service provision for adult persons with intellectual disability in Ireland.

In Europe, many people with intellectual disabilities continue to live in congregated settings. In 2012, Ireland formally introduced a resettlement policy with people moving to live in more personalised arrangements. This longitudinal country case-study aimed to monitor the implementation of this policy and the intra-country variations that arose using the records maintained in the National Intellectual Disability Database. Details of over 4,000 people living in congregated settings were examined in 2007 and again in 2012 and 2017. In addition, people who moved from such settings from 2007 onwards were tracked and the number of new admissions to them was estimated over the 10-year period. Overall there was nearly a 30% drop in the numbers of people in congregated settings but the reductions varied markedly across the country and by 2017 the disparity was greater than in 2007. Also by 2017 persons aged over 55years were eight times more likely to be accommodated in congregated settings. The case-study illustrates the value of a longitudinal dataset for monitoring policy implementation across a diversity of provider organisations and administrative areas.

An exploration of care‐burden experienced by older caregivers of adults with intellectual disabilities in Ireland

Accessible summary Older family carers of an adult with an Intellectual disability were asked about how they sometimes feel when supporting another person. Most carers felt a little stressed or strained. Older carers felt less stressed than younger carers. The value of supports that help carers was identified. AbstractBackgroundPeople with intellectual disabilities are experiencing increased longevity, and in parallel, their family caregivers are also ageing. The literature identifies that these caregivers are at risk of burden. The aim of this study was to measure the level of caregiver burden among older carers of adults with intellectual disabilities in an Irish sample and to analyse the effect of socio‐demographic factors upon experiences of caregiver burden.Materials and MethodsThirty caregivers completed a survey questionnaire. Data were collected based upon participants’ self‐reports of burden using the Zarit Burden Interview (ZBI) and a socio‐demographic questionnaire. Data were analysed using SPSS version 24.ResultsOver 57% of carers indicated a mild‐to‐moderate level of burden. Analysis indicated that younger caregivers experience significantly higher levels of burden, when compared to older caregivers.ConclusionsThis study contributes to our understanding of burden among an Irish population of older caregivers supporting an adult with an intellectual disability. It identified that carers do experience burden. The importance of proactive assessments and supports for these caregivers was revealed. This study highlights a lack of Irish research in this area and may pave the way for future research which could build upon its findings.

Life Stories of the Economic Recession: Biographical Narrative Interpretative Method (BNIM) and the Lived Experience of Disability in Times of Austerity

In 2008, Ireland was impacted by global economic recession. Recession in Ireland was exceptionally severe and contrasted starkly to extraordinary prosperity immediately before. A comprehensive field of statistical data has since emerged indicating that children were particularly socio-economically impacted. Within this, children with disability and their families were shown to have been at heightened risk. This paper presents research findings of a Biographical Narrative Interpretative Method that addressed the lack of qualitative research on the lived experience of disability in Ireland during recession. It presents three life stories of a young person with intellectual disability, his mother, and a social worker in their affiliated disability service. A theoretical reading of the cases through an affirmative non-tragedy lens and then from within an overarching critical disability studies perspective follows. Among the conclusions is that better measures to safeguard the lived experience of disability in future capitalist crises are obligatory.

Quantitative examination of the bone health status of older adults with intellectual and developmental disability in Ireland: a cross-sectional nationwide study

Objectives(1) To investigate the prevalence of osteopenia and osteoporosis among adults with intellectual disabilities (IDs) and (2) to examine alternative optimal bone screening techniques.DesignObservational cross-sectional study.SettingWave 2 (2013–2106) of the...

Assistive technology: Understanding the needs and experiences of individuals with autism spectrum disorder and/or intellectual disability in Ireland and the UK

ABSTRACT Assistive technologies (ATs) aimed at improving the life quality of persons with Autism Spectrum Disorder and/or Intellectual Disability (ASD/ID) is an important research area. Few have examined how this population use and experience AT or their vision for future uses of AT. The present study aimed to update and extend previous research and provides insight from caregivers, and other stakeholders (n = 96), living in Ireland and the United Kingdom, on their experiences of assistive technology (AT) for ASD/ID. Caregiver and professional responses to an anonymous online survey showed that focus individuals were rated low in terms of independent and self-management skills, with scheduling and planning and communication identified as desirable future AT functions. Overall, positive experiences of AT were reported, with AT use more than doubling in recent years.

Is the Irish (Republic of) Comprehensive Employment Strategy Fit for Purpose in Promoting the Employment of People with Intellectual Disabilities in the Open Labor Market? A Discussion Using Evidence from the National Intellectual Disability Database

AbstractPeople with intellectual disabilities are largely absent from the labor market. Instead many people with intellectual disabilities attend one or more of the various employment, day, work (occupational) and training services available. This paper considers the impact of adult day service reform along with the new comprehensive employment strategy (CES) might have in improving the participation of people with intellectual disabilities in the open labor market. Day and employment services for people with intellectual disabilities in Ireland are largely organized though the Health Service Executive (HSE), the medical arm of Ireland's service machinery. However, these services have kept Irelands “invisible citizens” segregated, and separate from their communities. Despite identifying this problematic issue, services intended to support people with intellectual disabilities to lead more meaningful and fulfilled lives and be included in their communities have been unsuccessful in achieving this. Although successive governments and have announced to phase out segregated service provision for people with intellectual disabilities so that they can lead integrated lives as part of their communities, trends in the data reveal a growth rather than a decline in specialist, segregated service attendance. The widespread closures of employment services that operated as sheltered workshops, for example, did not lead to an automatic increase in the employment rates as would perhaps be expected. This signals that, despite the promise of better community inclusion through revived policies, as part of the mainstreaming agenda, services still largely operate in separate spheres and people with disabilities continue to lead marginalized lives on the peripheries of society. This research concludes that current disability policies in place to improve the lives of persons with disabilities and increase their participation and inclusion have had limited success. Most people with intellectual disabilities continue to attend adult days services rather than participating in their communities or engaging in meaningful work.

Our Homes: An inclusive study about what moving house is like for people with intellectual disabilities in Ireland

Accessible Summary The Inclusive Research Network (IRN) is a group of researchers who do projects that matter to people with intellectual disabilities in Ireland. This paper is about a project we did to learn what it is like for people with intellectual disabilities in Ireland to move from one house to another. We talked to 35 people who moved house. Some people chose where to move but others had no choice. Feeling safe made them happier in their new home. One third of the people we spoke to had no choice about where they live and who they live with. Having these choices is their right under the United Nations Convention on the Rights of Persons with Disabilities. People with intellectual disabilities need supporters who listen and respect them. AbstractBackgroundSupporting people with intellectual disabilities to live well in communities they choose is deinstitutionalisation's central aim and endorsed by the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (UN, 2006). This study focused on the experiences of people with intellectual disabilities in Ireland when moving home using an inclusive research approach.MethodThis inclusive research project employed a qualitative approach. Participants included 19 men and 16 women (total n = 35) with ages ranging from 22 to 77 years. Structured interviews attended to the experience of moving home and the supports accessed during and after the transition to community living.ResultsThematic analysis yielded four themes: “expressing choice” in the moving process; “feeling connected or isolated when moving”; “accessing supports during and after the move”; and finally, participants' reflections on “experiencing vulnerability and feeling safe” while resettling.ConclusionsThis is the first study about people with intellectual disabilities moving home to be collaboratively designed and completed by an inclusive research team. Although much is understood about the long‐term benefits of engaging in meaningful choices about housing and supports, concerns remain about the extent to which the will and preferences of people with intellectual disabilities in Ireland are respected when moving home.

Developing citizen advocacy for adults with intellectual disability

In 2010, the Report of Disability Policy Review Keogh 2010 was prepared on behalf of the Expert Reference Group on Disability Policy and its findings contributed to the subsequent Value for Money and Policy Review of Disability Service in Ireland Report DoH 2012, which evaluated the efficiency and effectiveness of Health Service Executive HSE funded statutory and non-statutory disability services in Ireland. The Keogh 2010 report emphaisised the importance of advocacy in developing person centred care services. This imptus became more important as various media scandals highlighted some incidents of poor care to people with intellectual disability. In 2016, Sage Advocacy & Support for Older People were given funding to develop a citizen advocacy project for adults with itellectual disability in Ireland. This study presents the findings from engagement with adults with intellectual disability, their families and formal caregivers. This project sought to gain understanding and depth into the perspectives of people with intellectual disability on their life world and to generate other stakeholders’ perspectives regarding caring for this population. Consequently, the study used a qualitative approach, which enables deep and rich insights to people’s lives and experiences and is valuable in examining the interpersonal aspects of care important to patients. Specifically narrative inquiry has the potential to produce themes from the accounts of the study participants. Ethics approval was gained from University College Dublin. Participants were recruited from contacting the facilities who provided care to adults with intellectual disability. Nine focus groups 5 with service users and 4 with service providers were held as well as 4 semi structured interviews 4 with family members of the person and 2 with key stakeholders with intellectual disability and a survey with the Irish Association of Social Workers. Data were analysed using Braun & Clarke's thematic anlysis approach with the assistance fo NVIVO 10. Five themes were developed: Personhood, Service Challenges, Family experiences, Society’s approach to people with intellectual disability, The need for my voice to be heard. These themes enabled multiple perspectives to be considered, particualarly emphasing the need to priortise the will, preference, values and beliefs of people with intellectual disabiity and the need for service users and families to empower rather than be paternalistic. Limitations of the study will also be presented.

The exercise of human rights and citizenship by older adults with an intellectual disability in Ireland.

The UN Convention on the Rights of Persons with Disabilities (CRPD) provides the benchmark for assessing human rights and citizenship for people with disabilities. This emphasises autonomy, choice, independence, equality and participation for individuals as its fundamental guiding principles. This paper explores the exercise of human rights and citizenship for older adults with intellectual disabilities (ID) in Ireland, including choice-making, advocacy and political participation. Cross-sectional data (n=701) is drawn from wave 2 of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing. Rates of participation are reported, along with bivariate associations across a range of demographic, personal and social variables, while factors associated with level of choice-making and voting are explored. We found very low rates of choice-making, advocacy and political participation amongst this population. Two factors of choice were explored: key life choice and everyday choice. Some commonalities were identified between the two factors, yet key differences were also noted. Type of residence was the strongest predictor of key life choice yet not significant in everyday choice, while the reverse was true for functioning in activities of daily living. Other factors were also significant in determining choice, including level of ID, contact with family, functional limitation, literacy, age, having friends and respondent type. Low rates of participation reported here impinge on the rights of older adults with ID under the principles of the UN CRPD. Choice-making emerged as a multi-factorial phenomenon, with different factors important depending on the type of choice involved. This encourages a nuanced and personalised response from policy and support services to overcome individual challenges to participation as equal citizens. The significance of respondent type also highlights the difficulty of including self-report, supported and proxy participants in ID research.

Prevalence and associated factors of problem behaviours among older adults with intellectual disabilities in Ireland

A growing number of adults with intellectual disabilities (ID) are reaching old age, however, little is known about epidemiology of problem behaviours (PBs) in this population. The aim was to identify the prevalence and associated factors of PBs among older adults with ID in Ireland. Data was generated from Wave 2 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a nationally representative sample of adults with ID aged ≥40. Data on PBs was available for 683 (98.3%) of individuals. Over half (53%; n = 362) reported displaying any PB (verbal aggression, physical aggression, destruction, self-injury, or “other” PB). Multivariate analyses indicated PBs were independently associated with moderate or severe/profound ID, living in a community group home or residential centre, experiencing a greater number of life events in the last year, taking psychotropic medication, and reporting a doctor’s diagnosis of a psychiatric problem. A considerable number of older adults with ID in Ireland display PBs, which may hinder their opportunities to engage in community based activities and form meaningful social connections. High rates of psychotropic medication and doctor’s diagnosis of psychiatric conditions and their associations with PBs were highlighted. Future research should examine mechanisms underlying these linkages.

“Something was wrong”: A narrative inquiry of becoming a father of a child with an intellectual disability in Ireland

Accessible summary Ten fathers were asked to tell their story of being told that their child was diagnosed with an intellectual disability. They said that initially they were shocked, disappointed, in denial and blamed themselves when the diagnosis was certain. All fathers remembered when they were told and by whom they were told about their child’s diagnosis. Becoming a father was a reason to be happy. AbstractBackgroundIn recent years, there has been a growth of research on men’s experiences of becoming fathers, most of which relates to a typically developing child without intellectual disabilities. While some studies have specifically explored the experiences of becoming a father of a child with an intellectual disability, there are few studies from an Irish context.AimThe aim of this study was to present Irish fathers’ narratives within the context of leading up to the diagnosis and the actual diagnosis of a child’s intellectual disability.MethodA qualitative narrative inquiry design was used with ten fathers aged 31–48 years through semi‐structured interviews.ResultsThis study is part of a larger study focusing on becoming a father of a child with an intellectual disability in Ireland. The findings related to finding out “something was wrong” with the child are presented.ConclusionFathers are emotionally affected by the diagnosis of a child’s intellectual disability. Therefore, healthcare professionals need to be cognisant of the emotional upheaval that such a diagnosis can have on fathers and be sensitive to their needs in supporting them through this process.

Change over 12 years in residential provision for adult persons with intellectual disabilities in Ireland

PurposeThe purpose of this paper is to document the impact of major policy changes and reductions in government funding on residential provision for people with intellectual disabilities (ID) in Ireland.Design/methodology/approachIreland is unique in having a national database of people in receipt of services from specialist ID providers. Information on persons in residential settings from 2005 to 2016 was examined in terms of changes in the types of provision over time and broken down by age groups.FindingsFrom 2011 onwards, cuts in government funding coincided with a continuing reduction in the overall provision of residential accommodation for adults with ID. There was a parallel increase in the number of people living with family carers, especially persons aged 55 years and over. The greatest reduction was in residential centres which was in line with recent policy but this was not matched by an increase in alternative options, with fewer people aged 20-34 living in residential accommodation of any kind. Compared to Great Britain, Ireland has proportionately more residential places with fewer people living independently.Social implicationsMore Irish families have to continue caring for their adult relatives into their old age. Likewise, those resident in group homes and living independently are growing older which means there is an increased likelihood they will require additional support.Originality/valueThis national data set is a valuable tool for monitoring changes in service provision over time and for determining the impact of government policy and funding decisions.

Quality of home life for adults with learning disabilities: the interplay of economic policy and professional practice

PurposeThe purpose of this paper is to provide a commentary on the preceding article describing changing patterns in the provision and take-up of accommodation services for adults with learning disabilities in Ireland, in the context of the types of reductions in funding that have been apparent internationally for some time.Design/methodology/approachThe commentary examines some of the implications and discusses some of the underlying quality of life issues implicit in the data presented. It also explores the tensions between owning one’s home and receiving specialist support and examines what supported living might enable services to achieve.FindingsThe paper concludes that the nature of economic policy and professional practice, alike, have implications for the quality of home life enjoyed by adults with learning disabilities; and that the interplay between them is more complex than is often allowed.Originality/valueThese issues are not new, but frustratingly enduring. Their fresh consideration might assist the urgent need to achieve a more coherent narrative capable of consistent application for present and future generations.

Osteoporosis and People with Down Syndrome: A Preliminary Descriptive Examination of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing Wave 1 Results

Background: People with Down syndrome (DS) are a high “at risk” group to develop osteoporosis. Increased morbidity associated with older age, higher prevalence of Alzheimer dementia, hypotonia, hypogonadism, and thyroid disease, are all features of DS and predispose this cohort to musculoskeletal complications. Methods: The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) is a representative study of the aging of adults with intellectual disability in Ireland. The sample (N = 753) included 147 people with DS. Data was gathered on participants’ health status, behavioural health, health screenings and activities of daily living. The prevalence of osteoporosis and related risk factors among people with DS was specifically examined. Findings: Of the 147 participants with DS, 9.4% reported a doctor’s diagnosis of osteoporosis; a much lower figure than prevalence of risk factors would suggest. Predisposing factors identified included higher than general population rates of thyroid disease (37.4%), epilepsy (19.3%), sedentary lifestyle (51.7%) and the majority of the females reporting having experienced menopause (61%). Bone health screening was low at (8%) despite the presence of such high levels of risk factors in this population. Conclusion: Given the risk factor findings and the hidden nature of osteoporosis, underreported incidence among people with Down syndrome seems probable. Further investigations and systematic screening are required.

Integrating the diagnosis and treatment of nicotine addiction into healthcare in Ireland - from policy to practice

Smoking is a leading cause of preventable death and disability in Ireland. Government policy has set direction towards Ireland becoming tobacco free by 2025. This paper describes how the diagnosis and treatment of nicotine addiction is being integrated into healthcare in Ireland by the Health Service Executive [HSE] and presents a model linking policy with practice. A multidisciplinary group was established by the HSE to lead on implementation of government tobacco control policy, Tobacco Free Ireland, in services operated or funded by the HSE. A strategic plan was developed to support and monitor improved diagnosis and treatment of nicotine addiction through a range of inter-related measures: - A tobacco free campus policy was developed and mandated by the HSE Senior Leadership Team for implementation across all HSE operated and funded services; - A series of targetted and evidence-based mass multi-media campaigns were developed and implemented; - Exisiting hospital and community smoking cessation services were strenghtened through development and rolled out of a National Standard for Tobacco Cessation Support Programme and National Clinical Guidelines for the diagnosis and treatment of nicotine addiction are in development; - A telephone support service for quitters was commissioned to enhance the reach of smoking cessation services; - Brief intervention training was commissioned and delivered to hospital and community staff; - An electronic client-centred Patient Management System was commissioned to support smoking cessation services and to strenghtened monitoring and evaluation of service effectiveness; - A research and information programme was established to support policy implementation. - A set of Key Performance Indicators were designed and integrated into performance monitoring across all services to track implementation of key measures across the HSE so as to achieve policy implementation. The presentation will describe the challenges of achieving effective policy implementation so as to prioritise preventionacross complex and changing health service contexts and will offer lessons learned that will be applicable to other health care organisations seeking to adopt similar directions.

The Development of a Programme of Mental Health Services for People with Intellectual Disability in Ireland

Introduction: Within the current mental health policy in Ireland, Vision for Change (HSE, 2006), people with intellectual disabilities (I.D.) (target population) should have access to high quality mental health services, including an I.D. specific multi-disciplinary community mental health team. Historically mental health services for this population were poorly developed, without a clear policy or implementation strategy. Services that did exist were often embedded within social care services, with unclear pathways and models of care. Resources are being allocated to Mental Health of Intellectual Disability (MHID) services on an ongoing basis. Therefore the requirement to develop a clear strategy of implementing Vision for Change (HSE, 2006) for MHID was clear. Aim: To develop a clear programme of development of MHID services for children and adults, for full national implementation across mental health and social care services (key stakeholders). The timeline for the programme is 2 years beginning July 2016. The programme involves a number of key stages including: Scoping and mapping of existing resources Defining a clear pathway to care Developing clear governance arrangements Developing clinical activity metrics Key initial results from this programme will be presented including key service mapping data, as well as planned governance and care pathway arrangements. As this is a national programme, it is envisaged that there will be full be transferability of services achieved through collaboration and partnership across the relevant key divisions, organisations, disciplines and with Service Users and their families. Given the inclusive nature of the design of the programme, it’s sustainability potential is strong Developing a complex programme of service development involving existing and new resources across different service divisions requires services to be planned in an integrated manner. The intended impact of this programme is to improve the quality of mental health care and service experience.

At the interface between formal and informal care: Supporting families caring for a person with Intellectual Disability in Ireland

Introduction : Amidst changes to traditional family caregiving in Ireland, with families becoming smaller, people waiting longer before having children, and increasing life expectancy, the question of how to ensure the health and wellbeing of persons with intellectual disability and their families challenges the interface of formal and informal care provision. This study examines professional and family supports in place for families caring for a person with intellectual disability, and the relationship with carer resilience. Methods : A cross-sectional survey of family carers for a person with intellectual disability was conducted. All carers surveyed were in receipt of a social welfare payment for the care they provided. The questionnaire comprised of a number of psychometric instruments. The Family Support Scale was used to assess the availability and perceived helpfulness of family, friends, informal, and formal supports to carers and their families during the past three to six months. [1] Information was collected about the range of multidisciplinary support services required by carers during the preceding six months. [2] Carer resilience, the process that enables carers and their families to adapt, manage, and negotiate in the face of adversities [3], was also measured. The quantitative survey data was descriptively and inferentially analysed using SPSS 20 statistical software. Results : A total of 247 carers participated in the survey. The findings revealed that the main sources of support available to carers were their family General Practitioner (81.4%), their other children (74.6%), their friends (72.7%), and relatives (72.5%).From those supports availed of by carers, their partner (88.7%), school/college/day-centre (79.9%), and their other children (73.1%) were rated as the most helpful by carers. Levels of perceived family support, other informal supports, and formal supports were positively correlated with carer resilience. Discussion and Conclusion : Findings from this study provide a better understanding of the supports availed of and those perceived as helpful by families caring for a person with intellectual disability. Findings also highlight the importance of perceived family and professional support on carer resilience. With the changing nature of family caregiving, families with a person with intellectual disability need to be valued and sustained with support from both formal and informal supports, services, and resources. Therefore carers should be included and consulted as part of service evaluations, so that resources can be appropriately tailored, allocated, and best utilised by families. Caregiving situations should be assessed individually, and service providers and policies need to acknowledge and take into account this diversity in caregiving circumstances and integrate with families in order to provide care for people with intellectual disability living in the community. Limitations : This study comprised a cross-sectional survey of family carers of a person with intellectual disability, who were in receipt of a social welfare payment for the care they provided. This is only a subset of carers and further research is needed to examine the experiences of other cohorts of carers. References : 1- Dunst CJ, Jenkins V, Trivette CM. Family support scale: Reliability and validity. Journal of Individual, Family, and Community Wellness. 1984;1(4):45-52. 2- Beecham, J. Collecting and Estimating Costs. In M.R.J. Knapp (ed.) The Economic Evaluation of Mental Health Care. 1995; 157-174. 3- McCubbin HI, McCubbin MA. Typologies of resilient families: Emerging roles of social class and ethnicity. Family relations. 1988; 1:247-54.

226Engagement in Community by Older People with an Intellectual Disability in Ireland

226Engagement in Community by Older People with an Intellectual Disability in Ireland

Physical activity and obesity among nine-year-old children with and without chronic health problems, illness, or disabilities in Ireland

BackgroundRegular engagement in physical activity can help youth control their weight during childhood while decreasing one's chances of developing chronic diseases (e.g., coronary heart disease, diabetes) throughout the lifespan. While numerous studies have explored physical activity participation and weight status among typically developing children, few epidemiological studies utilizing nationally representative data has focused on children with chronic health problems, illness, or disabilities (CHID). ObjectiveThus, the primary purpose of this secondary-data analysis was to examine physical activity participation and the prevalence of overweight/obesity among nine-year-old children with CHID in Ireland. MethodsThe weighted nationally-represented data for the obesity analysis (N = 6114) and physical activity analysis (N = 6165) were derived from the Growing up in Ireland national study. Logistic regression analyses were conducted to examine associations between child weight status and likelihood of meeting physical activity guidelines. Children's primary caregiver weight status, child gender, and CHID status were correlates, while estimated household income, reported hours of weekly physical education, and locale were covariates. ResultsChildren with CHID had significantly higher odds (1.51, 95% CI 1.19–1.91) of being classified as overweight/obese compared to peers without CHID, when controlling for locale, income, and weekly physical education hours. Conversely, having a CHID was not significantly associated with the odds of children meeting recommended physical activity guidelines. ConclusionsChildren with CHID had significantly higher odds of being overweight/obese, and these odds increased if the child had a primary caregiver who was overweight/obese. Physical activity levels did not differ between children with and without CHID.

"What's going to happen when we're gone?" Family caregiving capacity for older people with an intellectual disability in Ireland.

Changing family sociodemographic factors, increased life expectancy for people with an intellectual disability, deinstitutionalization and policy prioritization of the family as the principal care provider, presents new challenges to care sustainability. A qualitative study design was employed, entailing focus groups and semistructured interviews, with purposive sampling via the parent study population of the Intellectual Disability Supplement to The Irish Longitudinal Database on Ageing. The traditional sociodemographic facilitators of family caregiving are in rapid decline. Families perceived limited support from services and limited future care options. Few future care plans have been formulated. A strong possibility exists of placement of older family members with an intellectual disability in out-of-family home care. To anticipate and provide for quality care supports, there is a need to establish proactive initiatives, for both people with an intellectual disability and their families', to facilitate the early formation of long-term care plans.