This edition of CRUcial Times focuses on the theme of "Self Direction".
This edition contains the following articles:
From the president
Leading my life through my vision
Narissa Wilson was born in Mount Isa and lived there with her older sister and parents. She was diagnosed with Spinal Muscular Atrophy at 18 months of age. Narissa has been living independently and calling the Sunshine Coast home since 2004. She now lives in her own home with her partner and house mates of her choice. She manages her own funding which she ensures is aligned with her vision of the life she wants and needs.
What are self directed options and what should we expect from them?
Dr Michael Kendrick is well known internationally as an educator, advocate, consultant and author. He has worked in government and non-government agencies and consults on issues such as service quality, safeguards, and design of personalized services. He lives in the United States, but as a regular visitor to Queensland, he also understands the local and national issues that people with disability and their supporters face as they strive to live in their community.
Michael’s website contains further information and resources.
Re-shaping a life: changing the hole to fit the peg
David Goldsmith is a young man in his late 20s who lives in Boondall and is assisted by his parents, two sisters and support workers to have an interesting and challenging life. Bespoke Lifestyles supports David and his family to manage his funding and provides advice and education on family-managed arrangements for example employing support workers. David and his mother Jan write of their experience with self direction.
A journey with people towards self direction
Leanne Burke works for Staffing Options in Queensland. She manages the establishment of systems to enable people who want to direct their own support or direct on behalf of their husband, wife, son, daughter, brother, sister or another person they are in a committed relationship with. Leanne, along with a small team of development workers, can provide assistance with planning, implementing and reviewing the supports required. She has previously worked for, and assisted to establish, several small family- and member-governed services. Leanne is also actively engaged in a family-directed support arrangement on behalf of her sister. This role is undertaken as part of a loving family who collectively have a life time of experience in creating informal and formal responses, some more successful than others.
What does it really take to live my life to the max
Jaquie Mills is Chair and founding member of Vela Microboards Australia (VMA). She is also Chair of the Positive Behaviours guiding committee, a university lecturer at Edith Cowan University and board member of the Foundation for Social Inclusion. Jaquie and her partner Darryl credit the process supported by Vela Microboards Australia with their son, Eli’s, success so far in creating a good life despite his complex disabilities.
The erosion of individualised funding
Bruce Uditsky, M.Ed., CEO, Alberta Association for Community Living (AACL) and Adjunct Professor, Community Rehabilitation & Disability Studies, Community Health Sciences, Faculty of Medicine, University of Calgary. Bruce currently serves in an advisory capacity to a number of government ministries on policies and legislation affecting individuals with intellectual disabilities. He has also played a leadership role in the development of a number of innovative community initiatives particularly in the fields of employment and post-secondary education. Bruce is frequently invited to speak and consult internationally on inclusion, social justice, family advocacy and community capacity. He is the parent of two adult children, one of whom is adopted and has intellectual disabilities.