We recognise that new ways of supporting people with disabilities to live enviable lives are desperately needed. Many initiatives have been developed with the earnest intent to find better ways of supporting people to live good lives. Some of these initiatives are being referred to as ‘individualised’, while others use ‘Person-centred’ verbiage. Some focus on ‘self-determination’, while others emphasise ‘choice’. Reliance on these simple descriptors is problematic in a number of ways:
- We lack an operational definition that is universally understood when using most of these terms. What criterion is used to determine whether a service qualifies as ‘Person-centred’?
- Some of these terms have been used interchangeably as if they mean precisely the same thing. For instance, some people believe ‘individualised’ and ‘Person-centred’ are virtually the same, while others believe they have unique meanings. What is actually implied when we use the description ‘individualised’?
- Most of these terms emphasise only one narrow concept of what qualifies as good support, rather than a more comprehensive understanding of all the features required for a service to be of good quality. A service might, in fact, be individualised and still not provide good, relevant support.
- Many services describe their programme using the preferred terminology of the day (or funding source) when, in fact, the service remains the same as it was prior to the formulation of the new ideal intended by the term. This contributes to the confusion surrounding our current descriptors.
This author believes that current terminology fails to offer an adequate guide for describing good work and offers a description of some of the most seminal features of innovative and quality practice.
Doing the work ‘One person at a time’
‘One person at a time’ is often the definition given for ‘Person-centred’ work. When this rather simplistic criterion is utilised, meetings held or forms completed that refer to just one specific person could be said to be Person-centred. Based on this definition, numerous organisations could rightly say they have been providing Person-centred supports for many years. As my colleague Michael Kendrick has often reminded us: ‘We can do harm to one person at a time!’ The converse is also true: it would be difficult to do our best work in any way other than one person at a time. Thus, the concept of Person-centredness is crucial, but not sufficient, to ensure good work and good lives for people relying on our work.
Getting to know people in a different way
Typically, service providers have focused on assessing, quantifying and documenting people’s deficiencies with great thoroughness and precision. What people can’t do is given much greater scrutiny than what they can do. The problem with this approach isn’t just that it is a negative exercise. The problem is that it doesn’t yield the kind of information that leads to revising service practices in meaningful ways or that results in good lives for people. In order to assist people in living enviable lives, we will need to shift our focus to a capacity approach. We need to find ways of discovering people’s interests, skills and potential contributions. A greater investment of time will be required to get to know people in this way, before designing supports. Perhaps some of the best work in getting to know people differently, referred to as the ‘discovery process’, has been formulated by Michael Callahan (see www.marcgold.com).
Magnifying the voice of the people being supported and their families
Magnifying the voice of the person being supported requires the professionals involved to relinquish previously held power and control (something many of us find quite difficult to do) in favor of listening to the voice of the person whose future is at stake. Empowering people to be the primary decision.makers in their lives is an absolutely critical component of quality work! The concept of self-determination must be solidly grounded in a broader framework than that of simply giving people what they say they want. There are many complex issues related to self-determination that need clear and coherent responses: life experiences void of opportunity to know the typical ways of the world, the balance of wants and needs, informed choice, risk.taking and proper safeguards, and the interplay of rights and responsibility.
Adding new planning tools and methods to our repertoire
A number of organisations have adopted new planning tools and methods, including ones that involve large sheets of paper and colored markers (as opposed to fill.in.the.blank forms), that take place in libraries or living rooms (instead of conference rooms), and where hospitality is offered in the form of delicious food. These planning gatherings are often viewed as a huge success, perhaps because they spared the
participants from the drudgery of our more standardised ways of planning. However, plans can quite easily be drafted in this fashion and still not be good plans. The converse is also true: plans drafted in conference rooms with no markers or food could be far superior to those embracing this new culture. Ultimately, the plan is a good one when it addresses other issues of quality discussed in this article, and when the plan is effectively implemented.
Describing desirable lifestyles
Traditionally, many of our planning efforts have focused on answering the question, ‘What does this person need?’ The resulting answer often involves ascertaining which service from a predefined list of options would best match the support needs of that person. The list usually specifies various levels or models of service: low support hostel, day service, etc. For instance, it might be agreed that what a person needs is a ‘high support hostel’. Better outcomes are more likely to result if, instead, we begin with a different question: ‘What would be a desirable lifestyle for this particular person?’ Consideration of the features of an ideal ‘home’ for a person yields a description that might include: living in the community they grew up in, with a large garden, affordable, within walking distance to shops, with a second bedroom for a live.in supporter, etc. Rather than determining which residential service is best, we describe what home would ideally look like. Service then becomes a means to an end (a good life), not an end in and of itself.
Creating new options
Currently, most providers have invested available resources in existing service options. If we intend to do the work one person at a time in a way that honours the voice and desired lifestyle of each person, we will need to figure out ways to un.bundle funds so that resources are used to create unique support configurations. In some circles, this is referred to as ‘the money follows the person’. The process of un.bundling funds requires very complex and political strategies. It also requires the courage and commitment of leadership. Once fiscal resources are freed up to fund the desired lifestyles of individual people, service providers will need a new set of skills and mechanisms to go about the work of creating new options.
Focusing on contribution to build community
The idea that innovative service delivery is embedded in community is not at all new. For a number of years now, efforts have been made to locate services in community and to help people access the community. Now best practice encourages us to think more deeply about the true meaning of community and to assist people in becoming integral members of their community. People we support have too often been presented as liabilities in community—always the recipient of the generosity of others. Instead, we need to help people identify the unique contributions they can make locally, the ways that they can matter to others. Our communities can be made stronger by the contributions of all.
Facilitating meaningful relationships
It is commonly understood that the vast majority of people who rely on formal services for support are terribly lonely. Often, people have very few freely.given (unpaid) relationships, have a disproportionate number of friends with disabilities, and sometimes have absent or strained family relationships. If we are to improve the quality of our services, we must address this most fundamental need in more effective ways. Portraying people to other citizens in positive ways, finding opportunities for people to be routinely present in a valued community setting, helping people be good neighbors, identifying ways for people to personally connect with others who share common interests or life experiences, and helping people contribute are just some of the new support strategies we will need to embrace.
Supporting people to embrace typical, valued roles
The purpose of much of the services provided to date has been to protect vulnerable people, to keep people busy, to entertain, to train people in new skills, to provide housing, and/or to give relief to families and primary caregivers. A shift in how we see the purpose of formal support is required if we are to envision lives that are more fulfilling. As a foundational framework, Social Role Valorization (SRV) posits that the good things are most likely to be accorded to a person who holds roles that are valued by her/his community. Thus, one proposed way to think about our purpose is that of helping people fulfill new, socially valued roles in community. As providers, we will need to become more proficient in our understanding of SRV theory and practice, in order to successfully support people to obtain new, socially valued roles.
Revising our support roles and relationships
Many services have embraced the role of carer, with a primary focus on assuming responsibility for keeping people safe and adequately housed, fed and dressed. This role has necessarily forced us into an authoritarian relationship with people being supported.
The intention of this article is to offer serious food for thought for those interested in finding new ways to better support people to live good lives. Significant changes in the principles and practice embraced by providers of formal support are required. While this article initially suggests some of the most relevant issues to address, it in no way should be construed to be comprehensive. There are numerous other factors worthy of serious consideration.
While the information contained in this article is derived from Social Role Valorization (SRV) theory, the richness and complexity of the SRV framework is beyond the scope here. Interested readers are encouraged to learn more by visiting www.socialrolevalorization.com.