Classifying Support Needs for People with Disabilities

Project Team

University of Sydney, Centre for Developmental Disability Studies (CDDS) and Royal Rehabilitation Centre Sydney (RRCS)

Gwynnyth Llewellyn
Professor Trevor Parmenter (CDDS)
Mr Jeff Chan (RRCS)
Dr Roger Stancliffe (CDDS)
Dr Tim Griffin (CDDS)
Jenny Yule (RCCS)
Dr Vivienne Riches (CDDS)

Overview

This 3-year study, funded by the ARC Linkage scheme, is a collaboration between the University of Sydney, the Centre for Developmental Disability Studies and the Royal Rehabilitation Centre Sydney. The project aims to develop an innovative, rigorous and robust system of identifying and classifying support needs based on the conceptual framework that has been promulgated by WHO through the International Classification of Disability and Health (ICIDH-2, 2000). Specifically, the project will:

• Develop a comprehensive, multi-dimensional support needs assessment and classification system
• Assess the validity of this system to identify the support needs of people with diverse disabilities in a range of everyday situations
• Identify significant changes in the lives of people with a disability and the potential impact of these on type and intensity of need for support
• Assess the practical utility of the system to all interested parties (the person with a disability, their family, carers and advocates and service providers) in reliably and validly identifying support and service needs
• Determine the expertise and training required to reliably use the developed system in a variety of service contexts
• Develop procedures to implement the newly developed system at a national level and in conjunction with a commercial partner/s
• Make recommendations concerning the further development of the system over time and particularly in relation to a linked support planning process, which ensures efficient, effective and fair distribution of support services.

Approach

Disability is no longer regarded as a trait of the individual or outcome of underlying pathology. The recent determination by the World Health Organisation's (WHO) International Classification of Disability and Health (ICIDH-2, 2000) reinforces the concept of disability as a dynamic state typically incurring restricted function due to: (i) the interaction of the person (their health condition including impairment); (ii) the activities they desire to do (and any difficulties they may have in carrying these out); and, (iii) environmental and personal factors (restrictions on participating in the community such as physical access, discriminatory attitudes, particular background of an individual's life and living). Hence, an individual's functioning in everyday life is the result of a complex relationship between these three components. To ensure equitable resource allocation to permit people with disabilities to pursue their personal goals and chosen life activities requires a rigorous and robust system capable of accurately determining the type and intensity of support needed while taking into account the components of this complex relationship.

Our purpose is to develop a valid and reliable system to identify a profile of support needs for people with diverse disabilities taking into account the complex interaction of health condition, activity and environment. Specifically the project will further develop the conceptual model of support articulated in the 9th edition of Mental Retardation Definition, Classification and Systems of Support (AAMR, 1992). This support-outcomes model directly links support resources (including the person with a disability themselves and others, technology and services) with the functions of support such as receiving assistance with finances or work, or with home living activities, friendship, instruction and so on; and, the intensities of the support required whether this is only occasionally (intermittent); time or occasion specific (limited); needed over an extended period (extensive) or of a frequent and intensive nature (pervasive). This model is based upon a "best fit" assumption. That is, that a match between the supports needed and the type and intensity of the support provided results in desired outcomes such as achieving personal goals in key life areas, increased personal satisfaction and enhanced quality of life.

At the heart of the support needs assessment and classification system is:

• A procedure/s to involve the person with a disability and those most familiar with the person
• Reliable methods of observing and assessing support needs in situ
• Valid measures to identify support needs in a range of key life areas and which take into account the interactive effects of health condition (and impairment), desired activity and context (including environmental and personal factors)

The project has four discrete components. These are: (i) the development of the support needs assessment and classification system based on gold standard instrument development methods; (ii) the identification of life changes (events and transitions) and their potential effects on support need (APAI); (iii) the development of procedures and technologies to involve all concerned in the system (including people with disabilities with cognitive or communication difficulties); and, (iv) the development of a standardised user satisfaction evaluation to be implemented throughout the life of the project.

Anticipated Outcomes

The outcome and product of the proposed three-year study will be the well-validated Support Needs Classification Instrument system, along with a comprehensive manual with technical data at camera-ready stage and a computerised data base/CDROM for potential commercial publication.