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Clinical care and clinical services
O01 Meeting the needs of the Huntington's Disease community with allocated Individual Support Packages (ISP) located within the doctrine of the existing disability service system in the State of Victoria, Australia
  1. M Brinsmead,
  2. A Maur,
  3. T Gardner
  1. Huntington's Victoria, Hawthorn, Victoria, Australia

Abstract

Background Huntington's Victoria (HV) is a non-government community service provider that receives funding from the Victorian State government body situated within a generalised disability service framework. HV is currently funded to provide the following service programs:

  • Information/education provision for the HD community, the broader community at large and various service sectors across the health, aged and community care continuum.

  • Short term case management.

  • Facilitation of individualised support packages (ISP) which is an allocation of funds based on current and immediate needs of the person with disability.

This paper will focus on how HV ISP Facilitation Program has through an innovative approach to practice achieved client directed outcomes within a legally prescribed disability service structure.

Aims

  1. To develop a disease specific dedicated care planning assessment process that considers client's self-determined goals in conjunction with mitigating identified current and future risks.

  2. To utilise existing government ISP procedures in conjunction with an internal data collection mechanism to collate and analyse outcomes achieved within the prescribed external government guidelines.

  3. To maximise and enhance quality of life at all points through the progression of the disease.

Method

  1. Develop and apply HV indicators of intervention to define client outcomes.

  2. Utilising HV database reporting mechanisms to regularly analyse collective client needs, service barriers and social work strategies and techniques to achieve desired client outcomes.

  3. Working within existing ISP structures to ascertain the procedures that provide desired client outcomes.

Results The use of existing ISP procedures has been proven through case based examples to be unsuccessful in meeting client need and quality of life. The 3 year lengthy timeframe for review of ISPs does not consider the direct link between ongoing changes in client need with the progression of the disease. This finding is supported by the numerous amendments to the existing 3 yearly plans to address a change(s) in client need as the disease advances. Conversely, the HV indicators for intervention have been able to more clearly identify client need and outcomes in direct relation to individual progression of the disease. Analysis of the data collected has demonstrated no common link between specific client outcomes and respective timeframes and/or allocation of block funding.

Conclusion Data collated from existing government ISP procedures as well as from HV data collection instruments identified current gaps in concurrently meeting the needs of clients with an allocated ISP. Inherently, HV now has been enabled to use allocated ISP block funds with respect to individual quality of life at the various stages of the disease to:

  • Strengthen family relationships,

  • Negotiate barriers of accessing local community,

  • Maintain independence and role within the family unit

  • Prevent premature entry to full time care facilities

HV now utilises a specific care planning process that deliberates client's self-determined goals in combination with attending to identified existing risks that informs the prescribed external government ISP guidelines. This is supported through introduction of a yearly review period in place of the extensive 3-year period in line with the progression of the disease.

  • ISP
  • care planning
  • quality of life
  • indicators for intervention
  • disability
  • disability community care packages for people with HD

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