As Of December 2016, 28,275 People

As of December 2016, 28,275 people were registered to the National Intellectual Disability Database (NIDD), representing a prevalence rate of 6.15 per 1,000 of the Irish population, based on the 2011 Census. 27,863 of these individuals were inn receipt of services and 68.7% lived at home. A change in age profile was also recorded, reflecting the ageing population. Of the individuals with moderate, severe or profound intellectual disability, those aged over 35 years of age increased. According to the first Census of Mental Handicap (as it was referred to then) in 1974, the percentage was 28.5%. This increased to 37.9% in 1996, when NIDD data were first reported and is currently 49.3%, as 2016 data shows. This change has implications for service planning and provision and requirements for enhanced multidisciplinary support and individualized care. The move away from traditional institutional models of care is set to continue, with an increase in community-based living arrangements for those requiring residential services. The number of those receiving day services is also continually rising, with many individuals also availing of additional supports such as respite services, vocational and rehabilitative training.

1.4 Policy in Ireland

Public policy and service provision for PWID has made a great deal of progress and key developments in the last 40 years. In fact, before the 1980’s disability policy was static and services such as medical and supportive care, education, employment and occupational training were all dealt with by the Department of Health and its associated agencies. The slow realisation that the lives of PWID and their ability to participate in society was affected by policies and services outside of the health sector sparked a change in approach. Furthermore, advocacy and equal rights movements contributed to the adoption of the ‘normalization’ theory which emphasizes the right of PWID to "live and function within the same structural norms as the rest of society" and the principles of ‘social role valorisation’ which address the importance of socially valued roles (Wolfsenberger, 1983; Tomas & Pierson, 1996, p.249). This idea of mainstreaming responded to the gap in public policy and service provision for PWID and sought to develop disability policy through incorporation of other sectors such as transport and information technology (Quin & Redmond, 2003, p.10).

The 1990’s saw developments in public knowledge and reports on disability services.

The Commission on the Status of People with Disabilities published A Strategy for Equality (1996) which suggested remodelling services and change in legislation to allow provision ‘in the mainstream’. The same year, The Department of Health published Towards an Independent Future: Report of the Review Group on Health and Social Services for People with Physical and Sensory Disabilities (1996) which referred to United Nations and World Health Organisation policy guidelines and aimed "To enable people with physical and sensory disability to live as independently as possible in the community". (Foreword) (as cited in Costello & Cox, 2013)

In the last twenty years there has been a move towards a rights based approach and a social model of disability. Developments in the disability sector led to significant advances policy and legislation (See Appendix for summary). A key document published by the Department of Health assesses the effectiveness and efficiency of services for individuals with disabilities (intellectual, physical and sensory). The Value for Money and Policy Review (VFMPR) proposes a reorientation of services towards a social model of disability which focuses on individually chosen, person-centred support throughout the planning, implementation and funding of services (National Economic and Social Development Office, 2012).

1.5 Position of the Researcher

I am a 22 year old Irish female with an undergraduate degree in Psychology and English. My undergraduate thesis investigated the Mental Health Effects of Foetal Alcohol Spectrum Disorder and before beginning this research my interaction with PWID was on an informal, personal level. Therefore, this is my first experience of both clinical and academic research and interaction with PWID. Through this experience, I began to understand the multifaceted nature of service delivery in Ireland and the importance of service users voice in planning their daily lives.

Chapter 2: Literature Review

"Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons. Full and effective participation and inclusion in society" (UN, 2006).

As the general principles of the UN Convention on the Rights of Persons with Disabilities (2006) state, PWID have equal rights to autonomy, choice and inclusion in society. This principle of equality forms a fundamental basis of the present study which is infused with the conceptualization that a human-rights approach to disability care is best practice.

3.1 The definition of disability

The World Health Organization (2017) defines disability as an umbrella term which covers an individual’s impairments, activity limitations, and participation restrictions. It is a complex phenomenon where the features of a person’s body and features of the society in which they live are reflected (Kaplan, 1999). It is an unstable concept with no concrete label of ‘able’ or ‘disabled’, but rather a continuum with uncertain boundaries between the two classifications (Marks, 1997).

Traditionally, disability was conceptualized as a medical, welfare or charity issue, which contributed greatly to discrimination, stigmatization an and exclusion of people in society. The medical model of disability approaches disability as a medical ‘illness’ or impairment, creating services to fix them. Lord and Flowers (2012) describes this model as problematic because it allows individuals, societies and governments to avoid addressing certain human rights obstacles disabled people face. The charity model of disability depicts individuals with a disability as objects of pity, in need of help and unable to make decisions. Used by charities, this model removes people’s rights, autonomy and independence. The social model of disability "focuses on eliminating the barriers created by the social and physical environment that inhibit the ability of persons with disabilities to exercise their human rights" (Lord & Flowers, 2012). It understands disability from a social and contextual point of view and supports individualized services which don’t require service users to conform to a universal and fixed type of care. Healthcare in Ireland has progressively moved towards a social model of disability in service provision (Routledge & Gitsham, 2004).

3.2 Deinstitutionalization in Ireland

The change to a social model of disability has been greatly influenced by the deinstitutionalization movement in Ireland. Deinstitutionalization is "the gradual abandonment of large residential institutions and their replacement by small scale services to enable people to live well in the community” (Mansell & Beadle-Brown, 2010, p.104). Residential institutions such as workhouses, poorhouses and asylums were used in the 18th century for those who were ill, destitute or had mental health problems. These large institutions increased in number to 22 nationwide by the 19th century, with no interaction between residents and the outside world (HSE, 2011). From the 1850’s onwards, special residential services for PWID were introduced, operated mainly by religious organizations (Chowdhury & Benson, 2011). By 1965, the idea that community-based care was more beneficial than institutionalized care saw a change in service provision, spearheaded by Parents and Friends Groups. The progressive toward community inclusion for PWID since the 1990’s has had strong impetus, drawing from international influence, normalization and disability rights movements (Chowdhury & Benson, 2011; HSE, 2011).

3.2.1 Normalization theory

Normalization was developed in Scandinavia by Nirje (1969), before moving across North America and Europe by individuals who wanted to reform and improve the quality of care provision for PWID. The principle recognizes that PWID are individuals and have a right to participate in daily decisions. It emphasizes the importance of services which allow service users to "live and function within the same structural norms of the society they live in" (Thomas & Woods, 2003, p.65). Wolfsenberger’s definition is based on community integration and cultural normativeness "The utilization of culturally valued means in order to establish and/or maintain personal behaviors, experiences, and characteristics that are culturally normative or valued" (1977, as cited in O’Brien, 1981, p.2). The theory led to a new conceptualization of the way services are structured for PWID, moving away from the medical model which failed to separate the individual from their disorder, towards community integration. Emerson stated that normalization is a statement on how the basic rights of PWID can be reflected by services in an Egalitarian society (as cited in Brown & Smith, 2012, p.3).

3.2.2 Social role valorization

Wolfsenberger (1983) also established ‘social role valorization’. This aims to address the marginalization of individuals at risk of societal devaluation and low-value role assignment as a result of being labelled fundamentally ‘different’ and of less value than others (Wolfsenberger & Thomas, 1983). By creating, supporting and defending socially valued roles within the community for PWID, they avoid discrimination and improve their quality of life (Thomas & Woods, 2003, p.66). Consideration of both normalization and social role valorization are useful for policy makers, support and care services in devising methods to increase service user involvement and vocalization of wishes. However, as Thomas and Woods stated "identifying the ultimate goal desired does not make it any easier to achieve in practice" (2003, p.65).

3.3 Person-Centred Planning

Developed from the work of O’Brien, PCP is rooted in Wolfensberger’s (1972) principles of normalization theory which postulates that people with disabilities can live a life as near to normal as possible. PCP also has groundings in independent living movements, a social model of disability and a strengths-based approach. Traditional procedures for individual program planning often place most attention and focus on the voice of those in a clinical role, while the voice of the individual themselves as well as their family and friends, are often seen as secondary (O’Brien, O’Brien, & Mount, 1997), The idea was created as a means of tackling the growing issue of misguided service provision for those with disabilities as they were frequently required to conform in their thoughts, feelings and actions to ideas concerning a service, experience or opportunity which were not their own. It was becoming increasingly difficult to find basic services and opportunities that did not embody a ‘one size fits all’ attitude (Routledge & Gitsham, 2004).

3.3.1 Assessing person-centeredness

As Robertson et al. (2007) stated, limited empirical evidence exists on the effectiveness of PCP from the service users point of view. The degree to which PCP accurately reflects the service user’s actual preferences and wishes has not been addressed enough in empirical studies. Determining preferences is an integral step in PCP and it stands as a foundation for the entire plan to be built (Everson & Reid, 1997; Miner & Bates, 1997).

3.4 The voice of the service user

Service users have a right to be visible and vocal, and research has shown one of the best means of raising awareness is the direct voice of the individual with disability. Life skills training, support in taking up committee roles, assistance from the circle of support and helpful community organizations, have all been reported to assist in making PWID more visible and vocal. Furthermore, research has shown that disabled individuals are prepared to ‘stand their ground’ and speak up for themselves (NDA, 2012).

3.5 Self-determination

Self-determination is a basic civil right by which a person controls their own life. Williams (1989, p.17) described it as a “life filled with rising expectations, dignity, responsibility, and opportunity”. Those who are self-determined chose and set goals, practice autonomy, advocate on their own behalf and make decisions about their own lives (Wehmeyer & Schwartz, 1998). Autonomy is the ability "to make informed choices about what should be done and how to go about doing it" (Doyal & Gough, 1991, p.53). Research has shown that self-determination is related to a number of positive quality of life outcomes for PWID (Algozzine, Browder, Karvonen, Test & Wood, 2001). Article 19 of the UN Convention on the Rights of Persons with Disabilities recognizes the right of PWID to have choices equal to others along with full inclusion and participation in the community (UN, 2006). Some of the best strategies for promoting self-determination include person centered planning practices (Vandercook, York, & Forest, 1989), self-advocacy, preference assessments and teaching skills in choice-making (Wehmeyer & Schwartz, 1998). Evidently it can be taught, learned and makes a positive difference to the lives of PWID. However, an increase in awareness and research on specific aspects such as autonomy and advocacy, is necessary to ensure the positive effects are felt by PWID.

3.5.1 Advocacy

Advocacy as term means standing with or speaking up for someone. As a mechanism it promotes self-determination, ensures rights and reduces discrimination for PWID. Importantly, it reflects a principle of autonomy which enables individuals to have a voice and participate in decision-making about the services they receive (Silvera & Kapasi 2002; as cited in Newbigging et al. 2014). Advocacy attempts to reduce the disparity in control which exists between service users and professionals (Silvera & Kapasi 2002). Research has shown that accessing advocacy increases sense of empowerment, well-being and self-efficacy (Mind 2006, Palmer et al. 2012). In recent years, advocacy in Ireland has made significant developments.

Self-advocacy is the "process by which people are empowered to speak for themselves” to claim their rights and entitlements (Comhairle, 2004, p.14; as cited in Lundström, 2008, p.3). Developing self-advocacy is an important measure in increasing equality and participation, at a group and an individual level. The two most important components are providing adequate information and increasing individual confidence to speak out when a service is unsatisfactory. Self-advocacy initiatives are often linked to PCP and individual planning programmes, developing goals and objectives and placing the service user centre stage. Although these approaches have proved successful in Ireland, the quantity and complexity of self-advocacy initiatives a service provides does not necessarily ensure service users personal autonomy (Lundström, 2008, p.4). Rather, service providers must expand their understanding and training to include objectives and information on what self-advocacy should ultimately lead to for their service users (Lundström, 2008, p.57).

3.5.2 Choice making

A fundamental and valued skill, choice making is a necessary component of everyday life which is intrinsic to human functioning. When denied the right to make choices, PWID are prevented from achieving self-determination, autonomy and their desired quality of life (Hoffman & Field, 1995; as cited in Sparks et al. 2016). Unfortunately, those with disabilities are constantly encountering barriers to developing and practicing choice making skills (Stang, Carter, Lane, & Pierson, 2009). These barriers are often created as a result of the environment individuals locate themselves in and include poor self-awareness, learned helpless and failure to recognize capabilities (Field, 1996; Field & Hoffman, 1994; Sparks, Pierce, Higgins, Miller & Tandy, 2016).

3.6 Service user involvement in service delivery

Every individual has the right to participate in their own Article 31 of the UN Convention on the Rights of Persons with Disabilities underscores the need for research which can inform policy and practice for people with disabilities (UN, 2006). The National Disability Authority (NDA) both advocate for mechanisms which support the inclusion of PWID and collect data to build their information base on how to develop practice in the area. In their 2013 ‘Your Voice Your Choice’ Report, the NDA highlighted the limited participation and involvement of service users even though there has been a growth in awareness and recognition of the fundamental role service users have in planning and implementing their own care. To have service users and their circle of support involved in decision-making at each level of service provision is the core vision described in the NDA’s Ask me guidelines for the consultation of people with disabilities (2002). Furthermore, the National Strategy for Service User Involvement in the Health Service 2008-2013 states that “the service user should be central to their own care and to the design and delivery of health and personal social services”, at an individual, community and national level. The NDA stated that involvement in the local community is vital to challenging negative attitudinal and ideological barriers which are common in Irish society (2013). Recent initiatives support increased participation at each of these levels. Research has shown that individuals with disabilities are equipped to make their own decisions once they are given the necessary information and advice (Lundström, 2008, p.3).

3.7 Research Motivations

3.7.1 A qualitative gap.

Although a social model of disability, person-centred planning and service user involvement are all becoming increasingly widespread. *The degree to which PCP accurately reflects the service user’s actual preferences and wishes has not been addressed enough in empirical studies. Determining preferences is an integral step in PCP and it stands as a foundation for the entire plan to be built (Everson & Reid, 1997; Miner & Bates, 1997).