From Reports Page:

Balandin, S., & Alexander, B. (1998) Evaluation of the Functional Independence Measure (FIM) for predicting care and equipment costs of adults with cerebral palsy. Sydney, NSW: Centre for Developmental Disability Studies.

This study investigated the use of the Functional Independence Measure (FIM) to predict: a) whether the amount of attendant care needed by an adult with cerebral palsy can be predicted accurately by his/her score on the FIM; and b) whether the FIM scores can be used to estimate current and future service costs in terms of staff time and the assistive equipment required by adults with cerebral palsy as they age.

It was found that it is possible to equate attendant care needs with a FIM score only in broad terms. The lower the score the more attendant care time is required. The finding that one point on the FIM score equates to three minutes of attendant care is in keeping with similar studies conducted in the USA with groups in rehabilitation and with multiple sclerosis but is not thought to be a reliable measure. It is clear that 3 minutes of care for each point on the FIM would only ensure that an adult with cerebral palsy and high support needs had enough attendant care basic care.

What should be borne in mind is that adults with cerebral palsy are likely to change in their levels of independence as they age. Therefore it is important to consider the age of the consumer when noting a FIM score and then plan that it is likely that over the years more attendant care or equipment will be required. Consequently, there is good reason to argue that funding for both attendant care and equipment must be flexible to ensure that an individual's needs continue to be adequately met as he/she ages.

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Balandin, S., Smith, R., Gonzales, D., Taylor, E., & Mackaway, J. (1999) Technology in adult education: Access issues for students with a physical disability. CDDS Report. Sydney, NSW: Centre for Developmental Disability Studies.

This project investigated access to computer technology, including physical access to work stations and access to the Internet, email, and CD ROM searches in eight adult education settings (i.e., four Universities and four TAFE Colleges) by students with a physical disability. The support available to students wishing to access such technology is an additional focus of the project. The knowledge of the Disability Service Officers and library staff related to the equipment needs and facilities available for students with a physical disability wishing to access the Internet, email and CD ROM searches is also investigated. It can be argued that both universities and TAFEs would benefit from a full access review by appropriately qualified auditors and that any recommendations should be incorporated into future building plans. If students with a physical disability are to have equal access to tertiary education with their nondisabled peers, there must adequate support, equipment and finance to facilitate this. Tertiary education institutions must consult with individuals with a physical disability as well as those who support them to develop a plan to ensure access to all parts of the buildings. DLOs and library staff should have the training they need to provide a good support service and both the institutions and government should ensure that there is funding available to provide the necessary assistive technology and support that these students require.

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Balandin, S., & Iacono, T. (1997). Impact of a socially valid vocabulary on interactions between employees with severe communication impairment and their non-disabled peers (Research report 1). Canberra: Australian Government Publishing Co.

Six augmented communicators and their nondisabled co-workers in open employment participated in a survey of perceptions of conversational interaction. The aim of this study was to explore both augmented communicators' and co-workers' own perceptions of their conversational interactions to examine if there were any differences. The augmented communicators all used multi-modal communication including their own speech. The participants' perceptions of their interactions were more similar than dissimilar. This study provided new insights into augmented communicators' perceptions of their conversational interactions and also examined their perceptions of their employment. It provides an Australian perspective on augmented communicators in full time employment which differs in many respects from previous reports on augmented communicators in the USA. The research findings indicate that the vocabulary needs for augmented communicators may differ from those of natural speakers. It may be time to cease endeavouring to promote communication similar to natural speech for augmented communicators' social interactions. Rather it is now time to examine the context and culture of successful competent augmented communicators in order to learn what strategies and communication techniques are important for positive social outcomes.

From Reports page:

Balandin, S., & Iacono, T. (1998) A few well chosen words. Augmentative and Alternative Communication. 14(3), 147-161

Ten professionals (five speech pathologists, three rehabilitation counsellors and two teachers) participated in a survey to investigate their ability to predict the topics and vocabulary of meal break conversations at work. Participants selected two topics that they thought were likely to occur during meal break conversations between nondisabled employees for each day of the week. They selected five key words appropriate to each chosen topic. The topics and key words were analysed for frequency and commonality and compared to the topics and vocabulary from actual meal break conversations in the work place. The professionals accurately predicted some topics that occurred in the actual conversational sample. However one third of the key words (33%) predicted by the participants did not occur in the conversational sample. The implications of these findings for augmented communicators is discussed in this paper.

From Reports page:

Balandin, S., & Iacono, T. (1998) Topics of meal break conversations. Augmentative and Alternative Communication. 1998, 14(3), 131-146.

Meal break conversational samples were collected from 34 nondisabled participants across 4 work sites. The samples were analysed for topics referenced and also for patterns of topics associated with days of the week. The results of the analysis indicated that the participants referenced 73 different topics. Analysis of the 10 most frequently referenced topics in each composite day file revealed 19 topics, of which 5 (i.e., Work, Fact Finding, Judgements, Food, and Family Life) were referenced every day. Analysis of the number of communication segments in each of the 19 topics indicated that Fact Finding was the most frequently referenced topic, but Work was the largest topic (i.e., contained the greatest number of words). There was some pattern to topic reference associated with the day of the week. Implications of this information for individuals with severe communication impairments who wish to access the work force are discussed.

From Reports page:

Balandin, S., & Iacono, T. Crews, (1999) Wusses and whoppas: The core and fringe vocabulary of Australian mealtime conversations. AAC Augmentative and Alternative Communication. 15, 95-109.

Conversational samples were collected from 34 nondisabled subjects across four work sites. The total sample was analysed for core vocabulary and the 5 most frequently referenced topics were analysed for core and fringe vocabulary and the commonality of fringe vocabulary across topics. The results indicated that there was a small stable core vocabulary of 347 words containing words unique to this study, which accounted for 78% of the conversational sample. A total of 21 words in the fringe vocabulary was common to all topics. Implications of this study for vocabulary selection for augmented communicators in employment are discussed.

From Reports page:

Balandin, S., Yazbeck, M., & Atkinson, N. (1998)
An audit of opportunities for physical activities for older Australians. CDDS project for the New South Wales Health Department.
 

The focus of the audit was the programs, services, facilities and resources for the promotion of physical activity among older people. Groups included the frail elderly, the oldest old, people living in rural communities and those with a disability.  Overall, it was found that there are opportunities for older people in New South Wales to exercise. The availability of activities varies, with more available in large centres than in rural communities. The barriers to exercise appear universal statewide. Opportunities for women, multicultural groups, those with a disability and those of low socio-economic status are more limited., with relatively few programs catering specifically for this group (e.g., there appears to be only two programs designed specifically for older Aboriginal individuals). It was the research team's impression that understanding of the benefits of exercise as well as engaging in it was directly related to economic and education status. It is clear that advertising to encourage older people to exercise should target the social benefits as well as the health benefits and should promote a positive image of older people . In addition, efforts should be made to ensure that the community infrastructure (e.g., transport, trained personnel) should support older people in their endeavours to exercise.

From Reports page:

Beange, H., & Lennox, N. (1998) Physical aspects of health in the learning disabled .  Current Opinion in Psychiatry. 11, 531-534

The papers discussed in this review have identified a high prevalence of gastro-oesophageal disease, Helicobacter pylori infection and sensory impairments in people with an intellectual disability, and have advanced the understanding of dementia and osteoporosis in this population. A greater understanding of intellectual disability in the primary care setting has also emerged.

From Reports page:

Beange, H., Lennox, N., & Parmenter, T.R. (1999) Health targets for people with an intellectual disability. Journal of Intellectual and Developmental Disability. 24, 283-297

This article describes the development and identification of a set of health targets for adults with an intellectual disability. The authors developed the targets through a process of collaboration, consultation and literature review. The targets were included if reliable studies had shown the conditions to be highly prevalent, easily detected and amenable to treatments that are readily available. It is envisaged that these targets will be further refined and eventually endorsed by IASSID for presentation to the World Health Organisation in the year 2000.

From Reports page:

Dowrick, M., Bailey, J., & Parmenter, T.R. (1998) Report of the project "A Multi-attribute evaluation of special education outcomes." Report, University of Western Sydney

This project aimed to develop a broadly based system for evaluating special education outcomes for students with intellectual disabilities enrolled in special schools. The approach was based on a multi-attribute utility analysis model (MAUA) model devised and used by Lewis, Johnson, Erickson and Bruininks in 1994. Although this model has been used in a number of instances in the United States, it has not been used in a systematic way in Australia, as the project developed, features were added that were more suited to our philosophy of evaluation and the schools selected.

From Reports page:

Parmenter, T. R., Atkinson, N., Balandin, S., & Durvasula, S. Health needs and services for people with developmental disabilities. Sydney, New South Wales: Centre for Developmental  Disability Studies.

This project examined the provision of health care to people with developmental disabilities in NSW. It was noted that the vast majority of people, (over 90%), access health services provided in the community.

The project included a review of the Australian and international literature and interviews with a range of stakeholders including health providers, consumers, families and government representatives.

The review highlighted the fact that while many people with developmental disabilities use the general health system, many barriers exist to their being able to access quality care for their special health needs.

These barriers can be divided into 4 main areas:

1. Systems Barriers.

• The fragmentation of health care delivery. While there are examples of good practice and successful interagency collaboration, there is an overall lack of planning that impedes the generalisation of good practice to all areas.

• Inadequate Medicare reimbursement also discourages general practitioners from being able to provide consultations of sufficient length to deal with the complexities of health care provision to people with disabilities.
  
• The need for training for medical and allied health professionals. This should concentrate on co-ordination and communication and knowledge of the specific heath issues relevant to people with developmental disabilities.

2. Provider Barriers

• Negative attitudes of some health care providers towards people with developmental disabilities is a barrier. A recent study of the health experiences of women with an intellectual disability observed that general practitioners and other health providers did not speak directly to the women but rather about them.

• Architectural barriers are also an important concern. There are many instances of facilities having poor physical access for people with disabilities. Steps and doorways of insufficient width are examples of barriers for people in wheelchairs. Another difficulty in accessing health services is the gaps in transport systems in outer metropolitan and rural areas. This is further exacerbated by the lack of doctors and other professionals with a specialist knowledge working in rural areas.

3. Direct Care Provider Barriers

• In a study of older Australians with an intellectual disability, it was noted that residential care workers had limited training in health matters. This coupled with the fact that they were predominantly young and inexperienced, had a significant impact on their ability to observe and report changes.

• High staff turnover in residential care workers is a barrier
  

4. Consumers' Barriers

• Difficulties in communicating an adequate medical history and symptoms to medical practitioners and carers was found to create barriers for people with disabilities receiving an adequate health service.

• In some instances maladaptive behaviours of people with developmental disabilities in clinical settings have contributed to the difficulty of providing good health care.

Following the evaluation of specific health needs of this population, together with an analysis of the barriers, a set of recommendations have been put before the Ageing and Disability Department.. These recommendations are in the areas of education and training, service delivery and practice issues, systemic changes, special health needs of people with developmental disabilities and the needs of specific groups.

From Reports page:

Parmenter, T.R., Griffin, T., (1998) Australian trial of the World Health Organisation ICIDH-2: International Classification of Impairments, Activities and Participation - Beta-1. New South Wales: Centre for Developmental  Disability Studies.

CDDS has been working with the Australian Institute of Health and Welfare (AIHW) to gauge the response to proposed changes to the WHO's International Classification of Impairments, Disabilities and Handicaps. This is an instrument that provides a universal classification system for data collection about disability.

The proposed changes are in response to changing concepts of disability. They reflect a move from a medical to a medical/social model. They also focus on the interaction of a person with their environment and aim to provide a classification for the whole population.
CDDS's role has been to look especially at the concept of "participation".

Findings included.
While there was no consensus, there was general agreement that the revision was a step in the right direction and reflected current trends.

• The terms "participation" and "activity" were preferred to "handicap" and "disability". There was a view however that "participation" is a relatively benign term and does not clearly place responsibility for acceptance and inclusion on society.
• "Activity" and "participation" were not regarded as being conceptually distinct.
• There was some concern about retaining the term "impairments". It was seen as a negative term, albeit in a positive framework.
• The relationship of the ICDH-2 to the "medical model" was a subject of intense discussion. There was a view that retainment of the term "impairment" supported the "medical model". Others were satisfied that "in the context of health" it was satisfactory.
• Further clarification is required, especially clarification of underlying values and assumptions
• The ICDH-2 was seen as complex and unwieldy.
• Respondents were comfortable with using the scale for large scale data gathering and policy development but less comfortable with its application to individuals.

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From Reports page:

Stancliffe, R. J., & Keane, S. (1999) Matched comparison of group home and semi-independent living. CDDS  Sydney, NSW  Centre for Developmental Disabilities Studies.

This study reports a comparison of consumer outcomes and service costs for adults with intellectual disability living in group homes or semi-independently (i.e., with drop in staff support). Participants from these two setting types were individually matched on skills and challenging behaviour, so that any differences found could reasonably be said to be due to living and support arrangements not systematic differences in personal characteristics of participants. Outcomes examined included quality of life, safety, loneliness, personal care, domestic management, health care, money management, social network, use of mainstream community services, community participation, domestic participation, stability of place of residence, living companion turnover, and natural support.

Most of these outcomes did not differ significantly when group home and semi-independent participants were compared. Where significant outcome differences were evident, participants living semi-independently experienced better outcomes. Semi-independent participants showed more frequent and more independent use of community facilities, more participation in domestic tasks, and more empowerment (choice and control over their life). There were no instances of significantly better outcomes for group home participants.

Outcomes that might have been expected to present more problems to individuals living semi-independently, such as safety, loneliness, personal care, domestic management, health care, and money management, showed similar results for both group home and semi-independent participants. These findings indicated that the lower level of staff support provided to semi-independent participants was not associated with poorer outcomes. Moreover, mean scores indicated that outcomes for both groups were generally quite good. This suggested that semi-independent participants received sufficient support to achieve satisfactory outcomes and that group home participants may have received more support than they actually needed.

Per-person expenditure to provide the accommodation support service was significantly and substantially higher for group home participants. The major factor in this cost differential was the lower number of staff support hours provided to the semi-independent group. It was concluded that semi-independent accommodation support services were more cost effective. Implications for community living policy were discussed.

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From Reports page:

Stancliffe, R. J., Whaite, E. A., & Keane, S. (1997)
Watagan Project Evaluation. Sydney NSW: Centre for Developmental disability Studies.  Report prepared for the NSW Ageing and Disability Department, Dec 1997

The Watagan Centre at Cooranbong, previously known as Carinya Oaks , closed in October 1995. The NSW Ageing and Disability Department provided funding for community accommodation and support for 83 people living at the Centre whose support needs were considered too high for placement in existing accommodation options. In 1997, 18 months after the closure, the Department commissioned CDDS to evaluate the Watagan Project.

Particular attention was paid to both measurable outcomes and the expressed views of consumers. There were significant gains in adaptive behaviour although no significant change in overall challenging behaviour was found. Almost all consumers said that their current home was better than Watagan and a large majority of people preferred their current work or day program and leisure activities. However, it was also found that these gains had been accompanied by a sense of loss for some people, especially of contact with friends and jobs at Watagan that had been valued by the consumer. Quality of life was affected by significant compatibility problems often related to the challenging behaviour of other consumers in their home.

The Watagan Project had a number of important components that contributed to its success such as full time flexible Project management and other factors which are outlined in the report. It also provided a number of important lessons that can inform future devolutions, including the limitations of relying solely on the four bed group home model and the need to consider a range of accommodation options .

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