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Consultation and beyond! moving beyond consultation to consumer directed services

Consultation and beyond! moving beyond consultation to consumer directed services. Good Practice in Client Consultation Forum Anthony Giles-Peters – AVUN Cath McNamara – Action for Community Living. What is AVUN? . Self help and advocacy group for people reliant on ventilatory support.

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Consultation and beyond! moving beyond consultation to consumer directed services

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  1. Consultation and beyond! moving beyond consultation to consumer directed services Good Practice in Client Consultation Forum Anthony Giles-Peters – AVUN Cath McNamara – Action for Community Living

  2. What is AVUN? • Self help and advocacy group for people reliant on ventilatory support. • Works with individuals and systemically to develop appropriate services.

  3. AVUN’s work has included: • A high profile in the “Save Fairfield Hospital” campaign. • Representing user interests in the move from Fairfield to the Bowen Centre. • Input into the development of the VRSS. • Participation in Government consultancies & reviews. • Over 10 years work in developing the VASS.

  4. Ventilator Users Community Accommodation Project • Supported housing alternative to institutional care. • Offering enhanced quality of life for those who choose supported accommodation. • Enabling individuals to remain at home longer by providing much needed respite in a homely environment.

  5. “Active participation of service users” Is often spoken of but rarely meaningfully achieved in disability services. However, this has been a feature of the development of the VASS project since the beginning over 11 years ago. In fact in many ways at various critical stages, service users through AVUN have lead the way. 

  6. Our guiding principle. People have a right to: • a quality life with control over the service they use and over decisions about their daily life • live in a home free from institutional practices, attitudes and restrictions • adequate support both within their home and to enable participation in the life of the community.

  7. Residents & respite users – choice and control on a daily basis • Control of their daily routine and life within the houses. • Direct the support and care they require. • A say in who they live with. • Participation in staff recruitment & training. • Participation in management of the service.

  8. What are the support and care needs of the residents? High support needs include: • Assistance with all or most activities of daily living ie personal care, house keeping, lifestyle and recreation. • Ventilation care significantly increases the support hours required, particularly in the case of people with a tracheostomy. • 24 hour availability of care because of dependency on ventilation. • Communication support needs of some residents is time consuming.

  9. Complex needs include: • Management of all forms of ventilatory support, ie iron lung, positive pressure ventilation via nasal mask & tracheostomy. • Suctioning. • PEG feeding.

  10. Service user involvement 1997 Health Solutions International Report (The Phelan Report). 1998 MGM Consultants Report. 1998 Service Providers for the proposed accommodation service selected. 1999 VRSS Working Group - Service Plan developed. Jan. 2000 VRSS Project Management Group to oversee DHS Capital Management Branch process. March 2000Appointment of KLCK Architects (now Woodhead International) as Architects/Project Managers.

  11. User involvement - bricks and mortar • DHS Investment Evaluation process. • Selection of suitable site. • All stages of design of the purpose built houses. • Submissions for Capital Funding.

  12. User involvement - Service development • Advisory Working Group - refinement of model, development of policies, protocols with Austin etc. • Training Working Group - training of attendants & nursing staff, empowerment for residents. • Project Control Group – oversight of construction.

  13. User Involvement – ongoing direction of the service • VASS Steering committee • -5AVUN members 3 of whom currently use theservice - committee is chaired by AVUN chairperson - other service users provide input via the SC reps • Staff Selection • Staff training

  14. User Involvement – ongoing direction of the service (cont) • House meetings run by residents dealing with day to day issues,e.g.household routines, pets, shopping, purchase of furniture etc • Direct individual or group discussions with management staff • Individuals direct their own personal support

  15. CHALLENGES • Staff adjusting to working in new paradigm- hospital nurses working in people’s home- attendant support workers working in group setting rather than individual’s home • Tension between individual choices and group needs / issues, e.g.- shared support workers • People who have diminished capacity to make informed decisions

  16. CHALLENGES (cont) • Conflict between individual preferences and bureaucratic / legislative requirements,e.g. OH&S issues, medication policy • Tension in the partnership model when service provider is responsible and accountable for:- employment and management of staff - managing the funding

  17. LEARNING • On-going, intensive involvement of service users is essential – a meaningful and controlling voice • Importance of genuine commitment to this vision • Need to be open to thinking through issues & challenges – creative and lateral thinking to come up with solutions rather than why it can’t be done • Need for sustainability irrespective of ‘personnel’ • Need for on-going vigilance

  18. Acknowledgements June Middleton Julian Pooley The Late Frank Rowe & family AVUN Committee Yooralla Contact Anthony Giles-Peters Ph: 9481 6646 Email: aggp@connexus.net.au Cath McNamara Ph: 9939 8602 Email: c.mcnamara@advocacyhouse.org

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