This article appears in Interaction, Vol 26#2&3, pp 34-37: republished with the permission of National Council on Intellectual Disability www.ncid.org.au 

Kathryn Treston is the Principal Consultant in the Bespoke Lifestyles' team.  Kathryn has worked for 30 years in the disability sector mainly supporting families in which there is a person with disability.  She operates from a strong belief that individuals and families should have choice and control when it comes to the supports that assist them to develop their lifestyle of choice.  This has led to a passion for establishing a system that mentors people in all aspects of self-direction and self-management.  Kathryn has worked with Bespoke Lifestyles since its establishment in August 2010.  Prior to this time Kathryn was Director of Mamre Association Inc., worked both in government and non-government roles in the service provision and also in many consultancy roles assisting others (individuals and groups) to establish person-centred responses.

In just two years, Bespoke Lifestyles has witnessed enormous positive change in the lives of people with disability and their families.  Many people are sharing stories about how different life is for them now that they are making decisions about the supports they need to live their chosen lifestyles.  Later in this edition of Interaction you will read some of these stories.  They, more than any other words, will help develop understanding of the enormous paradigm shift that is taking place in Australia.

The role of Bespoke Lifestyles is a 'behind the scenes' consulting and mentoring role to support those who want some assistance in moving forward with self-direction and/or self-management.  The enormity of this shift in paradigm from more traditional service provision to self-direction becomes more and more apparent as individuals and services come face-to-face with the fact that people with disability are no longer 'clients' but 'purchasers'.

Bespoke Lifestyles began in August 2010.  It built on significant work undertaken over the years by people with disability, families and agencies in Queensland in assisting people with disability and family members to build typical lives and to understand the importance of strong vision and good planning in achieving this.  With a seeding grant from Mamre Association, Bespoke Lifestyles began to work, in the first instance, with adults with disability and their families so that the person with disability could move to his/her own home and direct this lifestyle change.  It now not only works with adults but with people of all ages and is hosting about 70 funding packages for people throughout Queensland.

How it works

Because Bespoke Lifestyles believes strongly with the principle that every person should have a choice and control in their own life, it offers a comprehensive system to assist individuals to self-direct and manage (wholly or partially) their funding.  Self-direction enhances flexibility and freedom for each person to engage the supports they require in order to achieve their desired lifestyle.  In this model, people make their own decisions and manage the various aspects of their support or engage others (individuals or services) to do it on their behalf.

A series of workshops introduces each new member to all the aspects of the Bespoke Lifestyles' framework for self-direction.  Each member can then work with a Bespoke Lifestyles' Consultant whose role is to be available for consultation concerning any aspect of self-direction and management, such as planning, visioning, engaging support or services, legal and insurance issues, reviewing, support and staff matters, information updates, problem solving, accountability and succession planning.

Free and optional workshops are offered throughout the year on topics that may be of assistance to members in building their capacity and confidence in self-directing and managing.

Definitions

For Bespoke Lifestyles, self-direction describes a situation in which a person routinely makes the vast majority of decisions so that he/she considers him/herself to be fully in control of the support he/she receives.  This is based on a belief that the best decisions are made when they are made by the person him/herself or by people who know the person the best.

Self-management, on the other hand, describes the situation where the responsibility of the day-to-day management and administration involved in funded support is undertaken by the person, or the family, or someone (paid or unpaid) to whom various tasks are delegated.

The role of Bespoke Lifestyles with Individuals and Families

There are four equally important parts to the Bespoke Lifestyles' model.  Firstly, Bespoke Lifestyles organises workshops to focus on six aspects of lifestyles development.  These are the need for clarity about the lifestyle that is wanted, planning to achieve this, an understanding of the options for engaging support, the need for informal networks, accountability and succession.  Second, Bespoke Lifestyles receives the allocation of funding for each individual from the funding body.  Third, Bespoke Lifestyles assists and mentors in any way requested by the person or family whose funding is held by Bespoke Lifestyles.  Fourth, Bespoke Lifestyles accounts to the funding body and continues to assist with capacity building as needed and requested.

Bespoke Lifestyles also works in a mentoring role with individuals whose funding is not held by them.

Now

Two years down the track, Bespoke Lifestyles is working with a large number of individuals and families with varying sized packages for support.  A recent review with each member indicated a very high level of satisfaction with the model and a growing confidence on the part of individuals to self-direct and manage.  The Consultant offers security while still fostering self-reliance, when people have questions and want to explore different aspects.

Some things to note at this point in the history of Bespoke Lifestyles:

• People who direct within the Bespoke Lifestyles system are (largely) not purchasing from services but creating their own responses and engaging their own workers.  While individuals may have felt daunted by this prospect initially, their confidence and success has grown quickly.  Organising support for themselves has brought with it great flexibility and a truly personalised response.
• People engaged by individuals/families remain with the role longer than when employed by services.
• People need operating funds to support their individual systems.  These funds are in addition to the administration fee charged by the host and are needed for paying establishment costs, home office, training and recruitment, etc.
• What is vital in self-direction is that the starting point is good planning and that the planning is owned by the individual or family, not by any service that has a potential conflict of interest.
• A strong factor of the Bespoke Lifestyles' model is the ongoing availability of a Consultant to support, trouble shoot, share ideas and update on different issues.
• People who begin to direct with a low level of self-confidence, quickly gain confidence with the assistance of a mentor, requiring less and less support form the mentor.
• Positive changes evidenced in people's lives since they have been self-directing are many and profound.  There are stories to illustrate this in this issue of Interaction.
• Peer learning and support offered by participation in the Bespoke Lifestyles' workshops have proved valuable for members in the long term.
• Self-direction takes time and commitment by the individual and/or family representatives and the amount of time fluctuates as the plan and support changes.
• Self-direction assists with a holistic approach to lifestyle development.  It is clear that when an individual is funded through a number of funding mechanisms or programs that the best result is achieved when the funds are pooled and holistic planning  done.
• The role of Bespoke Lifestyles (or any disability support organisation) needs to be clearly defined so as not to detract from, but enhance, people's capacity to self-direct.
• There is need for supporting services to be transparent about what can be provided at what cost and in what timeframe.
• It has become clear too that many individuals and families are new to thinking, planning, directing and managing in this way and that the mentor role is vital to them.

Bespoke Lifestyles began with a strong belief in the capacity and right of people to direct their own lives.  At best it set out to be supportive of those who wanted to do this but needed a framework of operation so that they could achieve the lifestyles they wanted and be accountable for the public funds they had to purchase support.  Bespoke Lifestyles created systems to assist people and now has a body of evidence to prove that the systems are effective.  We are happy to share our experience with anyone who would like further conversation.

Please visit our website for contact details and information: www.bespokelifestyles.org.au