Family leadership centres on ‘right relationship’ where support is strongly aligned to each person’s individual needs. Self-direction builds the capacity of people with disability and their families to take leadership of paid support

Ms Prue Gorman1, Associate Professor Caroline Ellison2, Mr Michael Mooney3

1Community Living Project, Christies Beach, Australia, 2University of SA, Adelaide, Australia, 3NDIS participant, Reynella, Australia

Aim of the session:

‘Self-direction through Family Leadership’ builds the capacity of people with intellectual disability and their families to take leadership of their services and support. This session explores a Self-directed model from the perspective of a provider (practice model), researcher (family experience and outcomes) and an individual’s lived experience.

Building Family Leadership – Culture and Process – a Provider’s View
Prue Gorman, Executive Officer, Community Living Project (CLP)

Background:
In the past, traditional models of ‘care’ often reflected an organisation’s needs rather than the individual’s needs. If service providers are to actively support people with intellectual disability, and their families, to develop their personal leadership skills and take on meaningful choice and control, providers must embed a service culture with underlying beliefs, attitudes and behaviours that support the effective sharing of power between participants, families and staff.

Method:
Through an Innovative Workforce Grant from the Dept. of Social Services, the CLP has refined a model of Self-directed Support that builds on workforce practices developed in CLP over 30 years. This includes but extends beyond the use of person-centred tools and practices, to a culture of partnering in ‘right relationship’ with people with disability and their families. Self-directed Support assists each person to identify what is important for them in their support, helping them to recruit workers aligned to their vision and to direct them in their day-to-day work. This is strengthened through the active support of family and friends in this process.

Results:
The work undertaken through the Grant provided the opportunity for the CLP to review and adapt its organisational structure and processes, taking the best of past practice and reshaping it to better fit in the NDIS environment. It provided an opportunity to explore ways to ensure sustainability of the model eg high intensity support from an Inclusion Coach at the start of new services, with decreasing direct contact with the person, family and workers as their self-directing capacity builds and develops.

Implications:
Self-directed Support offers opportunities for people and families to build choice, control and flexibility with paid support. Family leadership fits well in the context of the NDIS as it:

  • Strengthens opportunities to create effective and sustainable support
  • Enables a focus on meaningful goals
  • Enables people with disability to have greater choice and control
  • Reflects the NDIS objectives of choice, autonomy and control

Evaluating Self-directed Support – Outcomes of a Family Leadership Model
Dr Caroline Ellison, Crossing the Horizon Professor of Disability and Aging Uni SA; Adjunct Professor Flinders Uni

Background:
Research conducted by Flinders Uni in 2018, funded by the Dept. of Social Services, aimed to identify and articulate the critical elements in agency culture, beliefs, attitudes and behaviours that support the effective sharing of power with people with disability and families, through exploring the experience of Self-directed Support as compared with more traditional agency recruitment and supervision practices.

Method:
The research used qualitative research processes to gain a rich and deep understanding of the lived experiences of individuals living with disability, their families and those providing support with a family leadership and self-directed support model. Surveys were used to measure respondents’ perceived and reported levels of empowerment, satisfaction and control. 13 online surveys were completed by people with disability (primarily intellectual disability); 12 were completed by family and friends of people supported by CLP; and 35 surveys were completed by CLP Support Workers. Face to face, in depth follow up interviews were also conducted with 4 people with intellectual disability, 3 family members, and 3 CLP Support Workers.

Results:
The research affirmed the family led model through demonstrating positive outcomes as reported by people supported, families and workers. It clarified the underpinning culture necessary for such a model to succeed which derives from a fundamental belief in the capacity of people with disability and families to lead their own support. Individuals and families report increased self-confidence to direct their workers and move toward realising their individual goals and vision. Workers value the opportunity of working within a self-directed model, express increased job satisfaction and retention rates are improved.

Implications:
The project affirmed the value of self-directed support as a way to build the capacity of people with disability and their families to exercise meaningful choice and control. It clarified the need for an embedded agency culture that sees workers in ‘right relationship’ with people with disability and their families.

My experience of Self-directing my own support
Michael Mooney

Background:
This session will share the lived experience of a person with disability who is now supported under a self-directed model, as compared to a previous traditional model. Michael has an intellectual disability and is supported to make good life decisions by his family and Circle of Support. Michael also has his own small business where he grows seasonal vegetables and herbs for sale at local shops and businesses.

Method:
Through the Self-directed Support model, Michael was supported by CLP to build his capacity and confidence to create a personal life vision and to understand and articulate his needs and goals. Michael has been able engage and lead a small group of workers who were personally selected to match his needs, interests and aspirations for the future.

Results:
Michael has built his capacity and skills to identify ‘best fit’ for workers to meet his individual needs and to recruit and lead his day to day support. The group of workers are building their capacity to self-organise and deliver support specific to Michael’s needs and vision. Together they are enhancing Michael’s independence through building his roles, capacity and confidence. Michael’s future is being safeguarded through supporting and strengthening his informal and freely given relationships.

Implications:
Self-directed support assists people with disability to build a real sense of purpose in their life, a range of valued roles and the realisation of meaningful goals. Strengthening the leadership skills of individuals, their family and informal network builds greater safeguards for the lives of vulnerable people.


Biography:

Prue Gorman is the Executive Officer of the Community Living Project, which focuses on family leadership and self-directed support. Prue previously worked in the Australian Government and community care across several non-profit agencies. Prue is a fellow of the Governor’s Leadership Foundation and was a National Finalist in the Institute of Managers and Leaders Australian Leadership Awards.

Assoc Professor Caroline Ellison is currently Crossing the Horizon Professor of Aging and Disability at Uni SA and an Adjunct Professor at Flinders Uni. Caroline has practice, policy and research interests around International development, gender and social inclusion, as well as a focus on capacity building and leadership. Caroline was the Inaugural Winner of the Developmental Educators Australia 2011 Dot Mills Award for outstanding contribution to the profession.

Michael Mooney has lived in his own home for 25 years at Reynella. Michael is a keen gardener and runs his own business, Greens2U, selling fresh fruit and vegies at local outlets. Michael enjoys Classic Cars and spending time with family and friends.  Michael enjoys music and movies, and has a load of pets ie a menagerie!