Community participation and quality of life for ex-templeton centre residents: policy, theory and practice: an opportunity for NGO collaboration.

• Author: Grant, John R.
• Position: Non-government organisations

Abstract

The quality of life for adults deinstitutionalised from the Templeton Centre in Christchurch is surveyed through the eyes of their mothers. Results are compared to those of other studies that followed up people discharged from similar institutions. These results are looked at in the context of contemporary disability policy and the challenges faced by community-based support providers to implement these policies. In particular, the paper will focus on the issues faced by day service providers of vocational training, leisure and recreation services, business enterprises, community participation and supported employment. It argues that in order to increase the quality of life for their clients, day services and residential providers (organisations providing "residential care" where housing is a part of a person's disability support package) need to work in a more collaborative way. The challenges of inclusion and social role valorisation for non-government organisations (NGOs) providing support services is also discussed.

INTRODUCTION

The deinstitutionalisation process in New Zealand and overseas has been underpinned by the notion of community inclusion and participation. Residential and day services were intended to facilitate the inclusion and participation of adults with intellectual disability in the wider community.

This paper examines the quality of life for adults with intellectual disability living in the wider community. Quality of life is looked at in terms of a person's social relationships and interaction, leisure and recreation activities together with autonomy, personal choice and independent living skills. The principles of normalisation and social role valorisation are discussed briefly as a means of providing an overview of the theoretical framework that has underpinned deinstitutionalisation. The results of this study are discussed relative to similar studies both in New Zealand and overseas.

Also, contemporary government disability policy is looked at, including Pathways to Inclusion (Ministry of Social Development 2001) and the New Zealand Disability Strategy (Minister for Disability Issues 2001). The focus of this relates to the challenges faced by providers in the process of implementing these policies. It will be argued that a collaborative approach is required in order to realise the ideals set out in these policies. In other words, day services will need to work alongside residential providers in order to increase the quality of life of the people they support.

BACKGROUND

Theory Underpinning the Deinstitutionalisation Process

In the mid-1960s Bengt Nirje, the executive director of the Swedish Association for Retarded Children, developed the theory of normalisation. He argued that people with intellectual disability should be able to experience the conditions of everyday life as closely as possible to the patterns and norms of mainstream society (Biklen 1979).

However, it was Dr Wolf Wolfensberger who developed the theory further and incorporated the theory of social role valorisation (Biklen 1979, Wolfensberger 1983). Wolfensberger (1987) argued that people with intellectual disability were at risk of developing "social devaluation" as patients in institutional environments. For example, institutions that modelled prison or hospital conditions created a physical setting that encouraged staff to label people with disabilities as subhuman or deviant, or as objects of fear, pity, ridicule or sickness (Wolfensberger 1987). The theory of social role valorisation argues that to enable people to be relabelled as "valued" they needed to live and work in a "valued setting" such as the wider community (Wolfensberger 1983, O'Brien et al. 2001)

Underlying this belief is the idea that every person, regardless of the extent of their impairment, is entitled to develop and to enjoy the maximum level of independence. This principle recognises the right of the individual to live in the environment that is the most supportive and the least restrictive of his or her freedom.

Being included as part of the community means having ties and connections with others. People build up these ties and connections that give their lives meaning through friendships and acquaintances, making a home, keeping up interests, and active involvement with family and the neighbourhood. Accordingly, the "valued social roles" Wolfensberger refers to include friend, neighbour, worker, student, relative, club member and so on (O'Brien et al. 2001:78). Social role valorisation, it is argued, leads to wider community acceptance and greater inclusion of people with disabilities. If people are seen to be adding to society--living in a local area, making it a better place, being employed--they are seen as being valued members of that society.

The principles of normalisation and social role valorisation can provide valuable guidelines for the design and implementation of support services, together with standards against which such services can be monitored and reviewed (McVily and Rawlinson 1998).

Quality of Life

As far as quality of life is concerned this has shifted from being primarily a topic of academic discourse to playing an essential role in decisions that have a major impact on people's lives (Borthwick-Duffy 1996, Schwartz and Rabinovitz 2003). This is clearly evident with a social policy such as deinstitutionalisation, as quality of life represents a key aspect of this policy. However, there are two fundamental questions regarding the measurement of quality of life. First, what aspects of a person's life should be considered and, second, what procedures or approaches should be used in measurement (Schalock 1996:46)?

Efforts to measure quality of life tend to focus on either objective or subjective indicators (Schalock 1996:46, McIntyre et al. 2004:132, O'Brien et al. 2001:68). Objective indicators refer to external, environmentally based conditions such as health, social welfare, friendships, standard of living, education, public safety, housing, neighbourhood and leisure activities (Schalock 1996:46). Such indicators are useful for measuring the collective quality of community life, but are insufficient for measuring a person's perceived or subjective quality of life. Subjective indicators focus on the person's evaluation of psychological wellbeing or personal satisfaction, including physical and material wellbeing, interpersonal relationships, social and community activities, and personal development (Schalock 1996: 46).

The composition of "quality of life" remains controversial, with little agreement concerning its definition (McVily and Rawlinson 1998). Most studies assessing quality of life include more objective indicators that are more likely to be common to many people (McIntyre et al. 2004:132). However, proponents of quality-of-life models for people with intellectual disability have increasingly stressed the importance of subjective indicators (McIntyre et al. 2004:132). Whether using subjective or objective measures, the evaluation of social reforms such as deinstitutionalisation has inherent methodological problems (for a discussion of these issues, see Jenssen 1995).

New Zealand Government Policy

Recent government disability policy in New Zealand has demonstrated a commitment to inclusion and the empowerment of people with disabilities. Pathways to Inclusion (Ministry of Social Development 2001), which builds on aspects of the New Zealand Disability Strategy (Minister for Disability Issues 2001), sets out a framework for improving the quality of services that assist people to participate in their communities.

The New Zealand Disability Strategy represents a long-term strategy for changing New Zealand from a disabling to an inclusive society. The strategy has the vision of a society that highly values the lives and continually enhances full participation of disabled people. This document sets out some very clear objectives designed to facilitate increased participation in the wider community. Central to this is supporting lifestyle choices, recreation and culture for people with disabilities. This objective is designed to create and support the lifestyle choices of disabled people within the community and promote access to recreation and cultural opportunities. The New Zealand Disability Strategy is also concerned with providing some direction in the creation of opportunities in employment and economic development for people...