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DIVISION OF HEALTH SCIENCES

FREEMASONS CENTRE FOR RESEARCH INTO AGED CARE SERVICES

Incorporating the

TG SMITH DEMENTIA RESEARCH AND DEVELOPMENT UNIT

A BRIEF REVIEW OF AGEING WITH A LONGSTANDING DISABILITY IN WESTERN AUSTRALIA

FREEMASONS OF WESTERN AUSTRALIA

A Discussion Paper

Mary Carey, Joan Cole and Duncan Boldy

February 2002

Acknowledgments The Physiotherapy Department of Royal Perth Hospital in response to community suggestions, was responsible for generating the initial interest in examining the issues related to the Late Effects of Disability. John Buchanan, the Superintendent of the Department of Physiotherapy initially identified resources for a small evaluation project to be undertaken by two senior staff members of the Department at the Shenton Park Campus, Ms Nicky Fortescue and Ms Gnanaletchumy Jegasothy. Dr Dade Fletcher has provided medical input in reviewing all clients who have been referred by general practitioners within the community to the evaluation project. The project has continued with executive support from Dr Peter Goldswain, Director of Rehabilitation and Aged Care Integrated Clinical Service. Citation: Carey, M., Cole, J., & Boldy, D. (2002). A brief review of ageing with a longstanding disability in Western Australia. Centre for Research into Aged Care Services, Curtin University of Technology, Perth WA.

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Created by Carey M. February 2002 Freemasons Centre for Research into Aged Care Services Curtin University of Technology, Perth, WA.

CONTENTS

1 2 3 4 5 6 7 8 9

Executive Summary ........................................................................4 Recommendations ..........................................................................5 Introduction .....................................................................................6 Disability and disability services in WA............................................6 Defining persons ageing with long standing disability .....................6 Reason for focus on people with long standing disability ................8 Disability data..................................................................................9 Disability demographics ................................................................14 Issues relevant to people ageing with long standing disability ......19

10 References....................................................................................24 Appendix 1..........................................................................................28 Appendix 2..........................................................................................32 Appendix 3..........................................................................................36 Appendix 4..........................................................................................39

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1. Executive Summary

This report provides an overview of information available on ageing with a long standing disability in WA. Information was sought from published and unpublished reports and discussions with a number of disability stakeholders. The main understanding gained from amassing this information is the limited usefulness for future service planning and provision, of the existing data on people with long standing disability. A number of reports (both from service providers and externally commissioned) have reported on the need to respond to the changing service and support needs of people with a disability who are ageing. Their findings, whilst comprehensively canvassing stakeholder opinions, are conveyed at the anecdotal level for many of the long standing disability conditions. There is useful data available for those people in the category of severe and profound disability who are in contact with service providers. This group however represents approximately only one third of West Australians who may be eligible for Disability Services Commission (DSC) services provided directly by the Commission or through DSC non government funded support services. Other West Australians with long standing disability who are mildly or moderately impaired by their disability remain unaccounted for on a number of fronts. There is a lack of accurate numbers and demographic details for the various long standing disability groups, and no longitudinal monitoring of disability impact on their functional ability and carer needs. It is this group of people who may benefit from the provision of specialist therapy services to help maintain and restore functional ability, thus preventing or delaying the need for additional support services. Ageing with a disability is a new phenomenon for some disabling conditions where previously, without modern medicine and technology, survival to an older age was not possible. Whilst many of the long standing disabling conditions are described as non progressive, there is increasing recognition that people with long standing disability age in advance of their chronological age and may manifest disabilities more commonly associated with older age groups. The ongoing financial constraints of health service funding demand that the provision of specialist therapy to this group of people is founded on evidenced based research that demonstrates the effectiveness of proposed interventions. This evidence is best obtained using systematically collected data amongst well defined disability conditions. Such data can be used to identify areas of concern, assess the extent of service need, assess trends in disability and associated functional ability and thus aid in the planning and provision of services for those people ageing with a long standing disability.

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2. Recommendations

The provision of appropriate health and related services needs to be based on the numbers and the specific needs of selected disability groups and their carers. This endeavour may be focused on people with cerebral palsy since, with an as yet incomplete knowledge of its causal factors (and hence possible preventive measures) together with the relative prevalence of this disability in the community, there will be an increasing demand for health services amongst this group of people. A further significant advantage for this choice, is the existence of a well-maintained cerebral palsy Register. The Register includes all individuals with cerebral palsy in WA born from 1956 onwards and those children with cerebral palsy who have migrated into WA. Other data sources regarding the existence of further cases of cerebral palsy (including DSC client data, Cerebral Palsy Association membership data, rural health service contacts and the personal knowledge of key individuals and service organisations), could be utilised to provide near complete identification of all persons with cerebral palsy in Western Australia. It is recommended that an estimate of numbers and need for services and support be obtained through a survey of West Australians with cerebral palsy identified from these combined sources.

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3. Introduction

Advances in neonatal care, and in the diagnosis and management of previously fatal conditions means that a cohort of persons with early onset disability is now living longer with severe physical disabilities (Crewe, 1990) and are likely to outlive their parents (Connell, 1998). This is a phenomenon which neither the WA Disability Services Commission (DSC) nor other disability service providers have previously had to deal with. Coupled with the changing population age structure imposed as a result of the ageing of a larger than precented cohort of baby boomers, there will be greater demands for new services to suit the needs of people ageing with a disability. However, aged care disability policy and practice has not evolved to meet their needs (Kunkel and Applebaum, 1992). People ageing with long standing disabilities have similar needs to others who are ageing, but have additional issues associated with the presence of long term disability. Changes typically associated with ageing can occur earlier and be more debilitating as a result of health complications and long term effects of changes in function. Maximising the long term retention of functional ability is a desirable goal for both those ageing with a disability and their carers. Emerging issues for disabled persons experiencing loss of function as they age, include the need for greater awareness that functional decline need not be an inevitable accompaniment to their disability (Campbell, et al, 1999; Thompson, 1999). In many instances, providing access to the required therapy services in order to minimise functional loss will require new efforts in terms of negotiating the boundaries between disability services and aged care services (Gatter, 1996; Dyson, 1999).

4. Disability and disability services in WA

Disability The following is a brief description of the definitions used in this review. In 1980 the WHO published the International Classification of Impairments, Disabilities and Handicaps (ICIDH), a model for conceptualising disability (WHO, 1980). The resultant classification system provided criteria by which the long term outcomes for people who had survived trauma and/or congenital anomaly and/or lived with diseases, could be recorded. Data concerning the outcomes was considered necessary to the development of government policies and appropriate support systems. The model has had wide acceptance and widespread application. It has for example been used in legislative definitions, policy development, service gate keeping, access to income support, surveys of prevalence and need, case management, research and the design and development of assessment and planning constructs (Dyson, 1999). More recently the model was reviewed to integrate the previously dominant medical model with the more current social model of disability and the resultant ICIDH-2 was released in 1999 (ICIDH-2 1999).

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The medical model of disability `....views disability as a personal problem, directly caused by disease, trauma or other health condition, which requires medical care provided in the form of individual treatment by professionals. Management of the disability is aimed at cure, or the individual's adjustment and behaviour change' (ICIDH-2 1999). The social model of disability instead `....sees the issue mainly as a socially created problem, and principally as a matter of full integration of individuals into society. Disability is not an attribute of an individual, but rather a complex collection of conditions, many of which are created by the social environment' (ICIDH-2 1999). The WHO model of disability has thus re-conceptualised `Disability ` as `Activity' (and `Activity limitation') and `Handicap' as `Participation' (and `Participation) Limitation') and describes `Impairment' in relation to `Body Structure' and `Body Function". The following example sumarises current notions for describing disability: Disability is usually conceptualised as a multidimensional experience for the person involved. There may be effects on organs or body parts, such as impairment of the ear structure or function, or both. There may be effects on certain activities, such as understanding and producing messages. There may be consequences for a person's participation in aspects of life, such as education, work or leisure. Participation can be facilitated in various ways, for instance, by the provision of assistive technology or sign language interpretation. Correspondingly, three dimensions of disability are recognised in the International Classification of Impairments, Disabilities and Handicaps (ICIDH) ­ body structure and function (and impairment thereof); activity (and activity limitations); participation (and participation restriction) (WHO 1980). The ICIDH2 also includes a list of environmental (contextual) factors described in terms of there being barriers to, and facilitators of, participation (ICIDH-2 1999). Core activities The degree of impairment is assessed and described in terms of ability to perform core activities. Core activities are self care, mobility and communication. Core activity restriction may range from moderate to profound. Persons with a severe or profound core activity restriction sometimes or always need personal assistance or supervision. Persons with moderate core activity restriction do not need assistance but have difficulty performing a core activity. Persons whose core activity restriction is mild have no difficulty performing a core activity, but use aids or equipment because of disability. Specific restrictions are core activity restrictions and/or schooling or employment restrictions.

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5. Defining persons ageing with long standing disability

Included are people ageing with a long standing disability having the following characteristics: Those people whose initial onset of disability was not associated with the ageing process. Such people may have lived with their disability for several years before reaching old age. Many have spent their entire lives with a disability. These disabilities may be congenital (eg cerebral palsy [Appendix 1], spina bifida [Appendix 3] and many forms of intellectual disability), acquired, (traumatically acquired spinal cord injury and brain injury ­ [Appendix 4, polio ­ [Appendix 2]) or the result of a degenerative conditions which results in disability before reaching old age (eg. multiple sclerosis). Those people with early onset disability experiencing new functional losses in capacity to manage activities of daily living due to the combined impacts of their chronological age and their disability. The above characteristics mean that flexibility is required where age criteria determine eligibility for service and program access.

6. Reason for focus on people with long standing disability

Evidence suggests that people with long standing disability display physiological changes generally attributed to ageing earlier in the lifespan than do others in the population and thus may require aged care and aged services earlier than do others of the same age. Many of these people are displaying major changes in functioning already and in advance to most others in their cohort. The baby boomers are the first generation to contain a substantial proportion of people with long standing disabilities. Advances in technology medical care and community support mean that many people with a long standing disability who once would have died before reaching late adulthood are now having a life expectancy which approximates that of the general population. Thus there are substantially increased numbers due to reasons of increased longevity and their being part of the baby boomer cohort The relatively new phenomenon of ageing and increased longevity of people with intellectual (mental) and physical disability raises two distinct but interrelated sets of issues. Firstly that of older carers, usually parents, who are increasingly likely to be outlived by their middle aged child with disability. The issues here centre around the changing needs of carers, support to continue caring, planning for the transition from parental care and replacement of parental caring roles. The second set of issues centres around ensuring positive ageing for older people with long standing disability and assembling the most appropriate array of services to address their needs (Gatter, 1996). Ageing with a disability leads to the potential intersection of two major policy sectors; Aged Care and Disability. Whilst there has been increasing interest ____________________________________________________________________8

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shown in the issue and ageing with a disability has been on the agenda for several years now there have been few formal policy responses. Reports from WA (Gatter, 1996; Proceedings DSC Conference, 1998), interstate (Dyson, 1999; Bigby, 1998) suggest that neither sector is adequately caring for those ageing with a disability and many fall in the gap between the services provided by the two sectors. A number of reports have indicated that their needs may not be adequately catered for within the current policy framework of Aged Care Services and Disability Services. Contrary to popular notions the Aged Care system is a specialist system targeted at the frail aged, (the `old old'), and informal resources provide the bulk of support for most older people. The aged care system may not have much to offer healthy young `old' people ageing with a disability. The following provides a brief insight into the issues of service provision for those ageing with long standing disabilities: Some service agencies and organisations find it difficult to adapt their practices. Even though they may want to be more responsive to the needs of their clients, they are often hampered by requirements imposed by funding bodies. Thus for genuine change to take place it must also take place in government programs and priorities. Recognition of the need for a whole of government approach is necessary. Boundaries between government sectors, departments and services are cited as major problems and consumers emphasise the need for greater networking by government agencies and by service providers. Because the planning system does not incorporate all relevant government departments, it is impossible to achieve integrated care. There is a need for greater coordination of services to enhance opportunities, to reduce the fragmentation of the service system and to remove the traditional chasm that has existed between service providers in care and rehabilitation for the aged. Confusion is widespread about the transition from disability to aged care services and whether the person's well being will be harmed or benefited by this transition (Gatter, 1996; Proceedings DSC Conference Perth,1998; Gething, 2001). The scenario in which these issues are being dealt with, is one where therapy services, like human and disability services generally, are being challenged to provide individually centred and responsive quality services, effectively and efficiently. All human services are being called on to meet this demand in a word where available resources rarely match need (Yeatman, 1996, p 7 and Dyson, 1999).

7. Disability Data

Available data on disability A report on disability numbers and their demographics in WA (Disability Counts, 1996) noted that there is little information generally available which is directly about disability. Whilst there are databases which record births, deaths and hospitalisations, and specialist registers (eg. cerebral palsy and birth defects) there is little information which is directly about disability. Mostly we have information on the frequency of occurrence of a particular disease, rather than the disabilities and handicaps associated with the disease.

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It is important for some purposes to know the causes and risk factors associated with conditions that cause disability. This information is essential to planning prevention programs, for example, and providing counselling for people with the disabilities and their families. For the purpose of service provision to people with disabilities, it is more important to know how many people have those disabilities, and the level and nature of their support needs, than to know details of the underlying conditions. Planning for service provision, however requires that information about the disability is related to information about causes and the time lived with the disability. What are needed then are databases that bridge the gap, and go beyond recording data about the occurrence of a particular condition, to encompassing information about disabilities and handicaps associated with those conditions (Disability Counts, 1996). We require more comprehensive information on disabilities amongst the various disabling conditions, (including the duration of the disability), in order to provide for the needs of people with disability by planning appropriate services, and to monitor trends in disability in WA. Essential considerations include determining what information to collect, and how to collect it and from whom, so that it is relevant to all stakeholders including people with disabilities, their families and carers, service providers, health professionals, policy makers and researchers (Disability Counts, 1996). Data limitations There are a number of problems associated with the collection of useful data on disability. Firstly, the disability data we have to hand is from surveys not from the census so it is not population based, but a sample which is used to make estimates for the entire WA population. The 1998 survey of Disability, Ageing and Carers utilised a sample of 42,000 people throughout Australia (ABS, 1998). Estimates for the number of people in some categories of disabling conditions have large standard errors and are thus unreliable. Unlike data obtained from administrative agency records, the ABS disability survey relies on respondents reporting information that may or may not reflect professional assessment. In the survey people were asked to indicate their specific disabling conditions. The survey allows for a maximum of 48 conditions to be recorded, but in practice 14 was the maximum number of conditions recorded. Another problem associated with the collection of meaningful data on disability relates to multiple disabilities. About 30% of people with disabilities have multiple disabilities. The ABS collects data only on the primary disability. The primary disability may be difficult to determine ­ It can't be assumed that one disability is the predominant one. The needs of people with multiple disabilities may be unique and may not be met by single disability agencies and therefore it is important to have data on this group of people.

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Sources of information and the reason for collection ABS Data The ABS disability surveys have collected cross-sectional data at four points in time (1981, 1988, 1993 and 1998) spread over a period of 17 years. These provide the only available data on disability based on a comprehensive national sample of the Australian population. The surveys cover rural and urban areas and gather data from both households and establishments. In the ABS surveys, a disabling condition is a disease, disorder or event (eg poisoning or accident) which lasted or is likely to last for six months or more, or which has produced a long term effect. To be included, a disabling condition must have resulted in one or more of the limitations, restrictions or impairments listed in the screening questions used to establish the existence of disability (p 15, Wen and Fortune, 1999). Disabling conditions were recorded using codes adapted from the ICD-9. The condition reported to cause the most problems was identified as the person's main disabling condition. However, the ABS does not specifically produce disability prevalence data by main disabling condition from the survey data (p xviii, Wen and Fortune, 1999). The Commonwealth State Disability Agreement (CSDA) Minimum Data Set (MDS) The CSDA MDS (CSDA, 1998) provides data items and definitions which are used to compile nationally consistent data on disability support services provided or funded under CSDA. Data are collected nationally across the country. Data is collected according to disability groups - intellectual, psychiatric, sensory, physical or neurological impairment or acquired brain injury (or some combination of these) ­ the purpose of which is to assess eligibility for the Disability Support Pension. The CSDA MDS provides a non-exhaustive list of examples of associated conditions or impairments for the physical disability group: paraplegia, quadraplegia, muscular dystrophy, motor neurone disease, neuromuscular disorder, cerebral palsy, absence or deformities of limbs, spina bifida and back disorders (AIHW, 1999). There are limitations however, associated with this data collection. Disabled persons captured in the CSDA MDS however, are only those eligible for support services provided or funded under CSDA, including income support, disability support services such as accommodation support, respite care etc and generic services such as education and employment (p 11, Wen and Fortune, 1999). Thus persons who are disabled but not accessing services are not captured by this data collection (p 19, Wen and Fortune, 1999) WA DoH Surveys The Western Australian Department of Health has conducted two surveys (WA Health Survey, 1995; Health and Wellbeing Survey, 2000) which recorded data ____________________________________________________________________11

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on general health, national health priority areas and chronic diseases and mental wellbeing. Information on disability associated with conditions were not collected. Other sources of disability information in WA Other sources of information on disability are listed below. Each is limited in the extent of information it can provide on disability in WA. Data is available from various service organisations both government and non government, which provide support for people with disabilities. However, these data sources will only have information on those in contact with the organisation at a particular point in time. For example, Headwest is an advocacy group for those people with acquired brain injury. Membership is not required and data item collection is limited by the privacy act to `what is it essential to know'. Similarly the WA DSC collects information on the people it funds directly and those funded through its agencies, but this will cover only people with severe or profound disability. Hospital discharge/morbidity data records discharges for particular conditions but not the disability associated with that condition. Data from the mental health services register can provide data on hospital contacts for patients with psychiatric conditions but not the disability status associated with those conditions. Population based data from specific disease registers is available for people with birth defects born since 1980 but will not contain information on all surviving cases of these conditions nor do they have information on disability. Other types of surveys elsewhere in Australia A state-wide disability survey based on a simple random sample of South Australian telephone numbers was conducted between 1996-97 (SA Health Commission, 1998). However rates of disability were not comparable to ABS data, due to exclusion of establishments and fundamental differences in conceptual framework, scope, survey methodology and operational definition for disability. There is a need to use standardised approaches and operational definitions to estimate prevalence rates and to be comparable between states and territories. The Australian Longitudinal Women's Health Study (ALSWH) is being undertaken by researchers at Newcastle University under contract to the Office of Disability (Rutman, 1999). There is much written about the implications of an ageing population and a recognition of the need to meet the needs of people with disabilities as they age. However, there is a lack of longitudinal data on aspects of living and ageing, with disability particularly for those ageing with a longstanding disability. Whilst the ABS has produced 4 national surveys of Disability Ageing and Carers since 1981, these only provide statistical descriptions of the incidence of self assessed disability at a particular point in time. A preferred study design for uncovering possible causal relationships between factors such as disability and outcomes in daily life, is a longitudinal survey. The ALSWH, is the only national ____________________________________________________________________12

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longitudinal survey with numbers large enough to allow for the comparison between people living with and without disability. Baseline postal surveys of three cohorts (18-23 yrs, 45-50 yrs and 70-75 yrs) were undertaken in 1996. So far data has only been published on the older cohort of women with the uncovering of some useful pointers to policy initiatives to help improve the health and wellbeing of older women with chronic illness or disability (Rutman, 1999).

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8. Disability demographics

The following information describes the impact of disability on Western Australians based on 1998 ABS data (ABS, 1998) and the Annual Client Data Collection 1998-99 (ACDC) compiled by DSC (Disability in WA, 2000). Findings from the 1998 ABS Disability survey show that: one in every five Western Australians has a disability (355,500 people). Most Western Australians with a disability (70% or 249,000 people) are under the age of 65. About one in every ten Western Australians is a carer of a person with disability (199,600 persons). About 86% (305,200) of those with disabilities are restricted in their ability to undertake everyday tasks or responsibilities (specific restrictions). The pattern of core activity restriction in WA is as follows:

Core activity restriction

Disability No Restriction Mild Moderate Profound/severe Other restrictions (schooling or employment only)

People

355,500 50,300 98,100 73,400 101,400 32,300

% of Disability population

100 14.1 27.6 20.6 28.5 9.1

Thus, the majority of people with disability, (148,400 or 8.2% of the total population) have no or mild restriction About one in every 10 people in the WA population (73,400 Western Australians with a disability) have a moderate restriction About one in every 20 people in the WA population (101,400 Western Australians with a disability) have a profound/severe restriction. More than two thirds of people with a severe or profound disability are under the age of 65 (62,400 persons) and therefore may be eligible for DSC support.

Services that are funded or provided by the DSC are targeted at the 62,400 persons with a severe or profound disability under the age of 65 and their families and carers The Commonwealth Department of Health and Aged Care and the Health Department of Western Australia are responsible for funding aged care services for people with a disability over the age of 65 There are three major types of conditions that contribute to disability in WA: Nearly three quarters of West Australians (260,300 persons) with a disability have a physical disability (excluding sight or hearing). Of these nearly half ____________________________________________________________________14

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(35.7%) are musculoskeletal and other connective tissue disorders such as osteoporosis or arthritis. One in every six disability in WA is due to a mental or behavioural condition (eg dementia, intellectual disability) (59,000 persons). One in every ten disability in WA is due to a sensory disability (3/4 are hearing impairments). The majority of funding through both government and non government organisations is directed to persons with an intellectual disability. Physical disability is thus the most common type of disability of which the most frequent are the musculoskeletal disabilities (126,900 persons). Of those people with a musculoskeletal disability, more than 79% (100,700 persons) have a core activity restriction. The majority of these people are under the age of 65. The data does not allow for the identification of duration of disability in people with long standing disabilities, (including people with cerebral palsy, spina bifida, post polio syndrome and acquired brain injury) and those whose disabilities have been of relatively recent onset. Where do people with a disability reside? 93% of Western Australians with a disability live in the community (330,615 people). What kind of help and how much help do they require? The type of help they require will depend on the nature and the extent of the restriction. Of the disabled people that live in the community, just over half or 179,000 people require help from another person with one or more aspects of daily living. This is 17,200 or 10% more than the number who need help in 1993 (DSC, 2000). Who provides the help they require? Most (71%) of the help provided for Western Australians with a disability is provided as informal care by family and friends. 24% of all help is provided formally through government or non government agencies or purchased through commercial agencies. No help is provided for 5% of cases (8,950 persons) where help is needed (p 13, Disability in Western Australia, 2000). Meeting the need for help 169,500 people (95% of those needing help) receive some help to meet their needs. 62% of people with a disability needing help have their needs fully met. 33% of people with a disability have their needs partly met. 5% of people needing help receive no help at all. It may be expected that, if the number of people with a profound or severe disability aged 65 and under increases, there will be an increased demand for support from services funded or provided by the DSC in WA.

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About three in every ten people who may be eligible for disability support services funded or provided by the DSC access the services available. Services funded or provided by the DSC are available to people with profound or severe disability under the age of 65 and their family carers. The 16952 people who accessed disability support services during 1998-99 represent 29% of people who may be eligible for such support (based on the 55,689 people who received a Disability support Pension or child disability allowance from Centre Link during the year) It is not entirely clear whether there has been a real increase in the number of people with a severe or profound disability because the findings at the 1998 Survey of Disability Ageing and Carers conducted by the ABS, may have been influenced by a number of factors. Such factors include changes made to the survey methodology (including a broader range of health and lifestyle restrictions included in a definition of `disability'); the influence of an ageing population (with a higher prevalence of disability amongst older people); changing community perceptions about disability and a reduced social stigma attached to `having a disability' (which may increase the likelihood that people will claim disability as a reason for applying for income support (ABS, 2000). However, support for an increase in the number of people with a profound or severe disability can be found in the increasing number of people receiving disability related payments from Centrelink which, over the past two years, have increased by 8.4% from 54,114 in 1997 to 58,682 at June 1999 (DSC, 2000). Information about informal carers (AIHW, 1999; Carers Association of Australia, 1998; ABS, 1998a). There are 199,600 carers in WA of whom 32,200 are the primary carers responsible for providing the basic daily needs of a person with a disability. 164,300 carers provide a range of assistance to meet the basic support needs of a person with a disability but are not primarily responsible for the person's day to day care. In WA close to 40% of primary carers are aged 55 and over Need for respite (AIHW, 1999; Carers Association of Australia, 1998; ABS, 1998a). In WA the majority (83%) of primary carers report they do not want or need respite. However 6000 primary carers do report a need for respite and only 1,100 have their need for respite support fully met. The WA government provides a carer's package for in-home respite support but this does not meet the needs of carers who wish to place the disabled persons they care for, in out-of-home respite care. Of 300 applications for accommodation support only 12 were funded in the last funding round. Carers commonly attribute a range of health problems to their caring responsibilities (AIHW, 1999; Carers Association of Australia, 1998; ABS, 1998a).

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Australian figures about carers (AIHW, 1999; Carers Association of Australia, 1998; ABS, 1998a) reveal that: 40% of carers have been providing care for a decade or more and 68% for more than 5 years. More than half (54%) provide care because alternative care is not available or is too costly. they save the Australian economy approx $16m annually. Carers are the majority providers of community care services delivering 74% of all services to people needing care and support. The HACC program (worth over $800 nationally) meets only 9% of this need. Carers thus play a vital role in maintaining the wellbeing of people with a disability. Providing support for carers to help maintain their caring role is therefore a critical consideration in making plans to address their future needs. Rationale for needs based therapy services to minimise loss of function in people ageing with long standing disability Carer perspective: Preventing loss of function would assist in alleviating carer burden, both financial, physical and emotional. Many carers are prevented from taking up paid employment by their responsibilities. They may become socially isolated, and may end up with stress related illness, physical injury or fatigue (Lindsay, 1995). In a recent Health and Wellbeing survey the key findings of 1500 carers surveyed Australia wide identified some common effects including that 1/3 have been physically injured and 70% felt they had lower energy levels as a result of their carer role (Online at: http://www.carers.asn.au/health.html). There is a clear need to provide greater support to carers. Approximately 4 in every 10 carer is aged 55 and over and will themselves be faced with increasing disability associated with their own ageing and due to health issues linked to their role as carer. Projections on the role of carers There is a need to alleviate carer burden and to increase support to carers for a number of reasons including a rise in the number of people with chronic physical and mental illness and disabilities, increased life expectancies, prolonged life and population ageing, ageing carers, decreased institutional care, ageing of rural populations and an increase in females in the work force. Estimates for the demand for disability support services are likely to change in line with the changing needs of the population being served (DSC, 2000). New areas of need are emerging as a result of the ageing of the population and the increased life expectancy of people with disabilities. In the past many disabilities were associated with a shortened life expectancy, which improved medical treatment has since extended. Disability services thus have to respond to the needs of an increasingly ageing population. In addition, persons with long standing disabilities experience the symptoms of ageing earlier than the general population. This trend is particularly evident in the number of service users in WA aged 45-64 years which has increased from 1,405 to 2,156 (a 53% increase) over the past five years. The number of service users in this age group who are living at home has increased from 304 ____________________________________________________________________17

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to 466 (a 53.3% increase). Thus the combined effects of a long standing disability and the increased life expectancy for the general population and for the population with a disability, may extend the already long years of care for parents or carers of people with early onset disability. Ageing of carers, in particular ageing of parents caring for their child, will continue as difficult and major issues until such time as they are explicitly addressed. Gatter (1996) recommended a `life planning approach' which addressed issues related to retirement of the person being cared for, their recreation and leisure needs, as well as their future care needs. Preventing functional deterioration in this group of people has obvious benefits in terms of maintaining their quality of life and avoiding additional carer burden. Population ageing and its impact on carers and caring for disabled people As the youngest of the baby boom generation turns 65 in 2031, the median age of the population is projected to reach 42-43 years. So, almost 50% of the population will be aged over 45 years and the proportion of the population aged 65 and over is projected to reach between 21% and 22%. This structural population ageing (the declining proportion of the population to be found in the younger age groups and a consequent increase in the proportion of older people) is mainly due to a sustained decline in fertility and continuing small declines in mortality. The baby boom generation is significantly larger than preceding cohorts and because of this it has made and will continue to make a large impact on the absolute size of a range of population groups of specific policy interest as it progresses through the age structure (ABS, 1999). It is expected that by 2026 there will be more people aged 60 years and older than children and young people under 19 years of age. This makes it necessary to revise attitudes to work, retirement and retention of older people in the labour force. Workforce projections show that meeting the future demands for goods and services will require government and employers to encourage higher workforce participation rates by people aged 55 to 70 years (Family and Children's Services Annual Report, 2000) The consequences of a rapidly growing aged population will be felt on two fronts: disability increases with age and thus the disabled population will increase. Secondly, there will be concerns about sufficient carers and the ability to care for the growing number of aged and disabled persons. Since the potential carer population (aged 15-64) is projected to grow at a slower rate after 2011, it may be more difficult to find sufficient numbers of carers and more difficult to generate the level of resources needed, to support a large aged population with an acceptable standard of living and quality of life. The most rapid change in the relative size of these two age groups is projected to occur between 2011 and 2031 as the baby boom generation moves out of the labour force into retirement (ABS,1999). Impact on the WA DSC Consistent with the changing age profile of Australians, the DSC has identified major changes occurring in the age profiles of people registered with the ____________________________________________________________________18

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Commission (i.e. those who have a developmental disability or who have autism). The number of people for whom the DSC is responsible is increasing. In 1988 people aged 55 years or more represented 2.6% of total client numbers. This had risen to 5% in 1995 and to 7.35% in 2001. (As previously mentioned, Centrelink, which provides Commonwealth disability related payments and benefits for adults and children with more severe disabilities under the age of 65, has recorded a 8.4% increase over two consecutive years from 534,114 at June 1997 to 58682 at June 1999 (Gatter, 1996; DSC, 2000).) Disability trends The absolute increase in the number of disabled persons due to the changing population structure has implications for providing care and services to the disabled and for carer support.

9. Issues relevant to persons ageing with a long standing disability

People with an early onset disability may age more rapidly and thus have higher support needs at an earlier age than older people generally. For example, significant proportions of people ageing with polio experience a range of changes in functioning (`post polio syndrome') explained by premature ageing caused by over-work in the motor neurones that survived the polio virus (Appendix 2). The decrease in energy and strength resulting from post polio syndrome requires these people to reprioritise and even drastically reduce their activities (Crewe, 1990). A recent Australian survey of adults with cerebral palsy, known to agencies, reported that a majority of respondents considered that their physical condition was deteriorating, although cerebral palsy is not considered a progressive disorder. Similar survey findings of negative changes in walking, digestion, bowel and bladder control, respiration, communication and swallowing are reported amongst individuals with cerebral palsy in the UK and US (Balandin and Morgan, 1997; Appendix 1). Those ageing people with an early onset disability will have different support needs than those of the generally ageing population, in particular related to their independent living skills and the availability of carers. The special situation of ageing people with a long standing disability may include the following: They are more likely than their normally ageing counterparts to have low levels of functional ability, which is one of the main reasons they require care, particularly residential care. Those relying on informal support from aged parents or carers are at risk of loosing their support. They're less likely to use community services and facilities or participate in community activities without assistance. They have low participation rates in both formal and informal day activities and leisure program (AIHW, 2000). The latter two observations may have relevance in helping to maintain functional activity. A proposed study investigating factors which contribute to low use of

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community services and facilities by disabled people, and their low participation in activity and leisure programs, is being initiated by the Cerebral Palsy Association of WA (Appendix 1, personal communication, Cheryl Lockwood, Cerebral Palsy Association of WA). Gaps in services for those ageing with a long standing disability As those with early onset disability age, there may not be services to meet their need or it may not be clear what is most appropriate to meet their changing needs. Or, as people age, their needs may span service types and /or program areas, and they may not fully meet eligibility criteria (eg age criteria) for some services that would address their needs (AIHW, 2000). A WA report (Gatter,1996) identified that the emerging needs of people with a disability who are ageing were not being adequately addressed, and that the ad hoc basis upon which most responses for need were based, would become increasingly inefficient and inappropriate. The report further identified that providing the special needs of those ageing with a disability would challenge bureaucratic service delivery boundaries. There is a general recognition amongst disability and aged care administrators that their services should become more flexible and tailored to individual needs. The application of this approach becomes increasingly difficult at the border between aged care and disability services. Gatter (1996) recommended that eligibility for services to people with a disability who are ageing should be on the basis of assessed need rather than chronological age. The following are some of the special support need of those ageing with a long standing disability (Getting et al, 1999, Gatter, 1996; Bigby, 1992). They have a high need for formal support services, particularly accommodation support services, since they often do not have good informal support networks and may lack independent living skills. They have a high need for assistance in choosing, locating negotiating access and travelling to community based programs, and may also require short-term or ongoing assistance in order to participate in chosen activities. They have a high need for assistance in expanding their social networks beyond their families and parents' peer group. The impact of disability changes throughout the life span and the needs for support tend to increase with ageing. Therefore reassessment of needs should be available to ageing people with a lifelong disability and they should be involved in initiating reassessments as required. Restricted access to services A number of factors contribute to restricted access to supports and services for people ageing with long standing disability (Williams and Chad 1998). Many people with a lifelong disability heavily rely on others to provide adequate and appropriate support. This can indirectly cause unintentional exclusion from community based services and activities.

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Ageing people with a lifelong disability are often perceived as being incompatible with present client groups. The location of services may make them inaccessible to some people with a lifelong disability. Personal financial constraint may limit access to services. The resources required to meet the emerging needs of older people with an early onset disability are diverse and complex. People ageing with a disability may be excluded from specific services by restrictive programs, due to limited funding sources. Service Planning The AIHW (2000) has identified four broad areas of focus for service planning to address the needs of ageing people with disability. They include the following: The importance of individual needs and circumstances. This should be the most important factor in determining the suitability of support services and assistance. Confirmation of the need for flexible service types and provision. Disability and aged care services links: the need for flexible services, spaning broad program areas. Carer support: support resources play a significant role in assisting carers and reducing the stress of caring, particularly among ageing carers. What is the evidence for the need for specialised service provision? Some attempt at addressing this point is made in appendices 1-4, which cover the specific disability groups that may be the target of specialised therapy services. Overall, it can be said that the target population is not accurately known or adequately defined. As has already been noted, disability data is not collected at the level of specific conditions and we have information only about people who already access the system through DSC and other service organisations such as Centrelink or non government funded organisations such as the Cerebral Palsy Association. Hence, in the first instance there is a need to: define the target population (access) assist people to access the system (procedures) determine the needs of people seeking assistance (needs analysis) Issues that impact on the provision of specialised services for people with long standing disability include the following: Persons with long standing disability who have core activity restrictions will have had carer needs for longer than their counterparts ageing normally with core activity restrictions. The extended demand for care impacts directly on care providers which in the majority of cases (70%) are informal carers. The impact on the formal care system is felt in terms of competing demands for support services and ultimately the ability to adequately fund such services. Loss of function may be accepted as part of the disability and be perceived as inevitable such that the person with the disability may not actively manage this process or their carers may not seek active treatment. This is linked to many disabled people opting out of the formal care system because they do not like the medicalisation of their disability and their loss of privacy when ____________________________________________________________________21

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they need to undergo regular assessments in order to satisfy eligibility criteria for continuing disability services and support (personal communication, Cheryl Lockwood, Cerebral Palsy Association, WA). The professionals disabled persons consult may hold similar views to their patients about the inevitability of loss of function that can occur in those ageing with long standing disability (Balandin and Morgan, 1997). Or, professionals do not recognise or do not value the importance of proactive approaches/measures to prevent further avoidable loss of function (Overeynder and Turk, 1998). Needs for specialist therapy services and resources (for disabled people) are perceived differently by disabled people and professionals (Kersten, et al, 2000). Until we know who is right about service needs, it is important to determine both users' and providers' views when planning and commissioning services. Prevention of disability is a key public health issue. To this end the Commonwealth Government has funded Primary Care initiatives to enhance the role of GPs in promoting healthy ageing as part of a population health approach, the intent of which is to promote autonomy and independence in older people generally. Specialist therapy and rehabilitation services to minimise loss of functional activity in those ageing with a disability is in accord with emerging policy and report recommendations to address the individual needs of people ageing with a lifelong disability (AIHW, 1999). Research into functional changes in people ageing with long standing disability Marked disparities in the ageing process have been shown between disabled and non disabled adults. Campbell, et al's study, (1999) compares the changing health care needs of middle aged non disabled individuals and those living with three disabling conditions including polio, stroke and rheumatoid arthritis and highlights the importance of improving access to preventive services, ongoing therapy and assistive technology for those individuals ageing with a disability. There are also numerous reports in the literature of increasing vulnerability to loss of function in persons with advancing age and duration of disability, and all suggest the need for preventative measures, routine assessments to detect changes, and access to health care and supportive services to alleviate or minimise the effect of these changes (Bax, et al, 1988; Turk, et al, 1997; Connolly, 1998; Thompson, 1999; Nochajski, 2000; Andersson and Mattsson, 2001). However, whilst recommendations are made to address the substantial functional decline that accompanies the ageing process in people with longstanding disabilities, no published studies were identified regarding the formal implementation and assessment of physical therapy interventions to address this loss of function. More commonly, anecdotal evidence regarding the benefits of physical therapy is reported. Anderson and Mattsson, (2001) for example reported the loss of walking ability in cerebral palsy patients most of whom did not receive physiotherapy and noted an improvement in ambulation in those who undertook their own regular physical training. Turk et all, (1997) noted that in a community study of women with cerebral palsy, 80% of ____________________________________________________________________22

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participants were involved in at least one physical activity including swimming, walking, use of exercise equipment, and weight lifting, but measurements of improvement were not reported after the different activities. To date, the field of research in functional change and ageing with a long standing disability is at a stage where the published research documents descriptive findings related to ageing. The next phase of research should attempt to document the special needs of people showing functional decline as they age with a disability. Subsequently, interventions can be implemented, followed by rigorous assessment via appropriate methodology, including the assessment of change from baseline between comparison groups. Attracting funds to expand existing therapy service provision or to initiate new services, is dependent on such studies to assess the effectiveness of planned interventions and for satisfying the practice of evidence based decision making.

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10. References

Andersson, C and Mattsson, E. 2001. Adult with cerebral palsy: a survey describing problems, need, and resources. With special emphasis on locomotion. Developmental Medicine and Child Neurology, 43, 76-82. Australian Bureau of Statistics. (ABS) 1998. Disability, Ageing and Carers. Catalogue number 4430.0, ABS, Canberra. Australian Bureau of Statistics (ABS). 1998a. Disability, Ageing and Carers. Summary of findings. Catalogue number 4430.0, ABS, Canberra. Australian Bureau of Statistics (ABS). 1999. Australian social trends 1999. Our ageing population. Catalogue number 41020, ABS, Canberra. Australian Bureau of Statistics (ABS). 2000. Working paper No. 2001/01. Accounting for change in disability and severe restriction, 1981-1998. Australian Institute of Health and Welfare (AIHW). 1999. Australia's Welfare 1999: Services and assistance. Online at: http://www.aihw.gov.au./publications/welfare/aw99/index.htm Australian Institute of Health and Welfare (AIHW). 2000. Disability and Ageing. Australian population patterns and implications. AGPS, Canberra. Campbell, M, L., Sheets, D, and Strong, P, S. (1999) Secondary health conditions among middle-aged individuals with chronic physical disabilities: implications for unmet needs for services. Assistive Technology, 11 (2), 105-22. Badawi, N., Watson, L., Lake, B, and Stanley, F, J. 1994. Cerebral Palsy. Perth. Cerebral Palsy Association of WA. Balandin, S and Morgan J. 1997. Adults with cerebral palsy: What's happening? Journal of Intellectual and Developmental Disability, 22 (2), 109-124. Bigby, C. 1992. Services for older people with an intellectual disability. Melbourne: Community Services Victoria. Bigby, C. 1998. Shifting responsibilities. The patterns of formal service use by older people with intellectual disability in Victoria. Journal of Intellectual and Developmental Disability, 23 (3) 229-243. Blair, E., Watson, l., Badawi, N, and Stanley, F, J. Life expectancy among people with cerebral palsy in Western Australia. Developmental Medicine and Child Neurology, 43, 508-515. Caring costs. 1998. Carers Association of Australia. Cathels, B, A, and Reddihough, D, S. 1993. The health care of young adults with cerebral palsy. Medical Journal of Australia, 159 (7) 444-6. ____________________________________________________________________24

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Connell, S. Accommodation options for the future. Proceedings of the Disability and Ageing Conference, Perth: WA Disability Services Commission, 1998. Connolly, B, H. 1998. General effects of ageing on persons with developmental disabilities. Topics in Geriatric Rehabilitation, 13, (3) 1-118. Crewe, N. 1990. Ageing and severe physical disability: patterns of change and implications for services. International Disability Studies 13, 158-161. CSDA (Commonwealth/State Disability Agreement). 1998. Agreement between the Commonwealth of Australia and the States and Territories of Australia in Relation to Disability Services, Commonwealth Department of Health and Family Services, Canberra. Dinsmore, S, T. 1998. Aging and postpoliomyelitis syndrome. Topics in Geriatric Rehabilitation, 13 (3) 25-34. Disability Counts. 1996. A profile of people with disabilities in WA. Disabilities Service Commission, 1996 Perth Western Australia. Disability Services Commission (DSC) Annual Report 1999-2000. 2000. Perth, Western Australia. Disability in Western Australia. 2000. Disability Services Commission. Perth, Western Australia. Dyson, M. 1999. Development and purchase of therapy services for people with disabilities in Victoria. Report commissioned by Disability Services Victoria. Gatter, B. 1996. The service needs of people with a disability who are ageing. Report commissioned by the WA Disability Services Commission. Bandt Gatter and Associates. Gething, L.,Cahill, L., Carey, C.,Fethney, J., Jonas, A and White, T. 1999. We're growing older, too: quality of life and the service provision issues for people with long standing disabilities who are ageing. The Community Disability and Ageing Program, Nursing Research Centre for Adaptation in Health and Illness, the University of Sydney. Gething, L. 2001. Ageing in place: Issues for people ageing with long standing disabilities. Australian Journal of Ageing, 20 (1) 2-3. Health and Wellbeing Survey. 2000. WA Department of Health. Perth, Western Australia. http://www.carers.asn.au/health.html. ICIDH-2. 1999. International classification of functioning and disability. Beta ­2 draft. Full version. Geneva. World Health Organisation.

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Kerstens, P., George, S., McLellan, L., Smith, J, A, and Mullee, M, A. 2000. Disabled people and professionals differ in their perceptions of rehabilitation needs. Public Health Medicine, 22 (3) 393-9. Kinsman, S, L and Doehring, M,C. 1996. The cost of preventable conditions in adults with spina bifida. European Journal of Paediatric Surgery, Supplement 1, 17-20. Kinsman, S, L., Levey, E., Ruffing, V., Stone, J, and Warren, L. 2000. Beyond multidisciplinary care: a new conceptual model for spina bifida services. European Journal of Paediatric Surgery, Supplement 1, 35-8. Kunkel, S., R, and Applebaum, R., A. 1992. Estimating the prevalence of long term disability for an ageing society. Journal of Gerontology, 47, S253-260. Lindsay, Mary. 1995. Who cares for the carers? the next major fucus in social policy. Online at: http://search.aph.gov.au/search/ParlInf. Morgan, D, J., Blackburn, M, and Bax, M. 1995. Adults with spina bifida and/or hydrocephalus. Postgraduate Medical Journal, 71 (831) 17-21. Nochajski, S,M. 2000. The impact of age-related changes on the functioning of older adults with developmental disabilities. Physical and Occupational Therapy in Geriatrics, 18 (1) 5-21. Overeynder, J, C, and Turk, M, A. 1998. Cerebral palsy and aging: A framework for promoting the health of older persons with cerebral palsy. Topics in Geriatric Rehabilitation, 13 (3) 19-23. Proceedings of the Disability and Ageing Conference. 1998. Perth: WA Disability Services Commission. Report of the Western Australian Cerebral Palsy Register (WA CPR). 1999. TVW Telethon Institute for Child Health Research, Perth. Western Australia. Roussos, N., Patrick, J, H., Hodnett, C, and Stallard, J. 2001. A long-term view of severely disabled spina bifida patients using a reciprocal walking system. Disability Rehabilitation, 23 (6) 239-44. Scope. 2001. Online at: http://www.scope.org.uk/ South Australian Health Commission. 1998. The South Australian survey of disability prevalence: November 1996-February 1997. Adelaide. South Australian Health Commission. Stellman-Ward, G., Bannister, C, M, and Lewis, M. 1993. Assessing the needs of the adult with spina bifida. European Journal of Paediatric Surgery, Supplement 1, 14-16.

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Thompson, L. 1999. Functional changes in persons aging with spinal cord injury. Assistive Technology, 11 (2), 123-9. Wen, X and Fortune, N. 1999. The definition and prevalence of physical disability in Australia. AIHW Catalogue No. DIS 13. Canberra: AIHW Williams, E and Chad, R. 1998. Promoting the fundamental principle of ageing in place for older adults with intellectual disability. Paper presented at the ACROD Conference, 25 November 1998, Canberra. WA Health Survey. 1995. WA Department of Health. Perth, Western Australia. WHO. 1980. International classification of impairments, disabilities, and handicaps: a manual of classification relating to the consequences of disease. Geneva: World Health Organisation. Yeatman, A. 1996. Getting Real. The final report of the Commonwealth/State Disability Agreement. AGPS. Canberra.

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Appendix 1

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Working notes 1. Cerebral Palsy (CP)

Contact - Anita Ghose: Manager of Children's Services She would be keen to consider possibility of a joint submission for funding an intervention program as proposed by Joan Cole. She is waiting to receive a report the CPA has commissioned on Carer Sustainability. This should be received within a matter of weeks and will be made available to MC. Contact - Cheryl Lockwood Senior coordinator Independent Living Program Cheryl is trying to set up a study that will investigate the barriers that prevent disabled persons from accessing health services. WA Cerebral Palsy Association (CPA) CPA (WA) has 820 client members of which 60-65% are within the children's services program. there are currently 303 adult clients between 10-15% (30-45 persons) are aged 35 and over The CPA would be interested in tracking those persons that have moved out of the children's services. A useful question to answer would be: Are they fully functional and integrated into the wider community or have they not had their needs met by the existing support services? Services Local observations and studies within Australia indicate that consultation with most health services decline markedly after leaving school. Young adults with CP have considerable, continuing impairment and disability. Lack of contact with health services after they leave school may adversely affect their health status (Cathels and Reddihhough, 1993). Cheryl Lockwood notes that when former clients do return seeking therapy services there is a long waiting list. Quite often for these patients, time is of the essence in obtaining the required help as functional loss can occur at a rapid rate. Cerebral Palsy (CP) ­ general information This is the most common physical disability of childhood and affects around 2.5/1000 infants per year. In WA this is approximately 60 infants per year (WA CPR, 1999) There are 20,000 people with CP in Australia and approximately 2000 live in WA. Based on individuals identified by the Cerebral Palsy Register of WA, there were 2014 people with CP born between 1958 and 1994 (1154 males and 860 females) of these 225 had died by 1997. Therefore at 1997 there were 1789 surviving CP patients in WA ____________________________________________________________________29

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There are 388 persons with CP between the ages of 35 and 45 in WA. The level of disability of these individuals is not known apart from those that are registered with and using the support services of the CPA WA. Life expectancy In WA the CP register only goes back to the 1950's so can only report on deaths of persons aged up to 40-50 years Before the 1950's very few people with severe CP survived into adulthood. Since then improved treatment and increasing awareness of the rights of people with disabilities and the increase in community care as opposed to institutional care, are all anticipated to affect mortality. The lifespan of those born before the 1950's may not be predictive of infants born later. Life expectancy is of paramount importance to people with CP. Knowing possible lifespan is essential for planing services. There are not many other registers world wide from which we can ascertain life expectancy ­ but WA is a good source of information (Blair E, et al, 2001). With the exception of those with profound intellectual deficit, most persons with CP survive to adulthood. Therefore it is important to make long term plans for their health needs. The causes of CP are multifactorial but at present not amenable to intervention (Badawi,et al, 1994). Thus it is reasonable to predict that the incidence of CP will remain roughly the same barring a steep decline in birth rates. In WA there is inadequate data to assess survival in persons with CP beyond the age of 18 yrs and no data to assess survival beyond 40 years because survival with very severe CP has only been possible since the routine use of antibiotics in the 1950s. There a few people with CP over the age of 45 yrs worldwide. The severity of CP may vary from minimal through to mild, moderate and severe and may be accompanied by varying degrees of intellectual disability. Functional/Rehabilitative research It was assumed previously that because CP was a non progressive brain injury, that physical function would remain relatively unchanged. The experience of those with CP and ageing is that their disability worsens. A brief review of US help sites for people ageing with CP suggest that there is little research into the ageing process of people with CP. Many of these older adults complain of increasing muscle cramping and spasms leading to motor imbalance, stiffness, total body pain and deep aching and extreme fatigue. Reports from British CP patients are similar: they have increasing physical complaints and difficulty moving around, experience progressive pain and stiffness. They experience more wear and tear and more injuries than previously thought. There is the natural loss of function through the ageing process and that caused by disabilities due to CP. Physical functioning can deteriorate with ageing as a result of poor mechanical efficiency (Scope, 2001). For those who have lived a lifetime with physical impairment, ageing ____________________________________________________________________30

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effects become apparent earlier than expected. CP is an example of a developmental disorder in which physical functioning can deteriorate with ageing as a result of poor mechanical efficiency (Scope, 2001). Comprehensive scientific evidence on the physical effects of ageing and CP are not available, though surveys have indicated some of the problems that are encountered. Whilst people with CP age in the same way as people with out a disability (primary ageing), some people with CP may experience secondary ageing effects. These are likely to be long term effects of the original impairment. Some of the factors which may contribute to secondary ageing effects in people with CP include: Poor wheelchair seating and posture Spinal deformities Contractures Absence of appropriate movement of limbs and joints Persistence with walking when it becomes increasingly difficult Exhaustion Ignoring the body's warning signals (pain, discomfort, and stiffness) Severe learning disability Inappropriate orthopaedic surgery. The primary changes reported fall in the domain of musculoskeletal function. A major concern is the decline in functional abilities manifesting itself earlier than expected in the general population. The musculoskeletal complaints manifest in: decreased mobility, difficulty with balance, and in increased frequency of falls resulting in fractures. A general deconditioning may result in increased need for assistance with Activities of Daily Living, in transfers, in assistance with personal hygiene, in dressing, or with other every day requirements. they may then be faced with the need to use assistive devices at a much younger age than their non disabled peers. unanticipated changes in functional abilities have to be accommodated for by the patient or their care givers. This can affect their roles in their families, their performance at work, their transition to retirement, their living arrangements and their functional independence. issues to deal with include unwanted retirement because of fatigue and physical limitations and a lack of a flexible work setting. Conclusion 1. Persons ageing with CP merit investigation as a group who may benefit from intervention to maintain physical functioning. Optimising their level of physical function has the additional benefit of impacting positively on carer burden.

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2.

There may be adequate numbers of people with CP and disability who are available to participate in an intervention program designed to limit potential deterioration in function.

An important issue is whether these people are keen to participate since many are reported to have limited contact with formal support services. This is partly due to their dislike of the medicalisation of their condition and the loss of privacy associated with regular mandatory medical review for maintaining continuing entitlement to support services. Others with CP may not feel motivated to take on a more active self care role through having become reliant on their carers. Long term, this may be detrimental to their functional ability.

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Appendix 2

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Working notes 2. Post Polio Survivors

Contact -Tessa Jupp There are 1700 post polio survivors on the Post Polio Network register of WA. Altogether there are estimated to be between 2000 and 2500 post polio survivors in WA. Post Polio Syndrome (PPS) is the term used to describe the late effects of poliomyelitis. New or increased muscle weakness is the cardinal symptom and diagnostic criterion for postpolio syndrome (Gawne and Halstead, 1995). Since this was an unexpected phenomenon it was not immediately recognised by the medical community that a late effects syndrome was developing in the polio survivors. Patients experience extraordinary fatigue, exercise induced fatigue and new muscle weakness that reflect an underlying process beyond the physiological changes of normal ageing. There is a slow multisystem decline due to ageing that interacts with the motor neuron injury sustained earlier in life during acute poliomyelitis. In the life of the PPS patients, a degree of disability emerges that places them on a different trajectory from the slow accumulation of disability experienced in normal ageing (Dinsmore, 1998). Their age distribution is as follows <2% 10% 38% 25% 19% below 40 yrs 41-50 yrs 51-60 yrs 61-70 yrs 71-80 yrs

thus about 50% of the PP Network members are aged between 41 and 60 yrs (out of 1091 respondents, this is approximately 550 people). 83% have contracted the disability before the age of 20yrs. Residence rural/metro 76% reside in the metro area 23% in rural WA At 2001 survey: 65% considered they had an increase in muscle weakness 72% considered they had an increase in pain (including back pain) 53% considered they had undue fatigue 45% had breathing problems 74% had sleeping problems Impact of post polio syndrome 40% have had to reduce their level of activity/job About 32% are on a Disability or Aged pension

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People who use aids for daily living 7% use crutches 13% use callipers 14% us a walking stick/frame Conclusion 1. This is a condition in which the effects of ageing are being increasingly recognised by the medical profession and for which there is growing recognition of the need to actively manage poliomyelitis sequelae to prevent loss of functional ability. The size of this patient group is not expected to increase over time since there will only be sporadic cases of the disease. However the current cohort of people with PPS below the age of 60 are a sizeable group and warrant attention.

2. 3.

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Created by Carey M. February 2002 Freemasons Centre for Research into Aged Care Services Curtin University of Technology, Perth, WA.

Appendix 3

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Created by Carey M. February 2002 Freemasons Centre for Research into Aged Care Services Curtin University of Technology, Perth, WA.

Working notes 3. Spina Bifida

Contact - Carmel Wright Client services coordinator The Spina Bifida (SB) Association of WA has about 110 members ­ this is about 1/3 number of people with SB in WA. The organisation is not funded for the provision of therapy services for its members. This congenital malformation occurs at the rate of about 1-2/1000 births. Genetics and disordered folate metabolism are implicated in its etiology. The majority of people with SB are below the age of 37 years. This is because most people with SB also have hydrocephalus, the treatment of which was developed about 40 yrs ago. Hydrocephalus is treated with the placement of a shunt in the ventricles of the brain to drain away accumulated cerebrospinal fluid. Kidney malfunction is also associated with SB and good renal management has also been important in enhancing longevity in persons with SB over the last 30-40 yrs. SB is a congenital malformation of the spine. Not all people are seriously affected. The majority, however, are born with the nerves supplying the area of the body below the lesion damaged, causing various degrees of paralysis of the legs. Services As with CP patients, there are good therapy services in place for children up to school leaving age to assist with maintaining mobility and functional independence. However there is no service provision for adults, who must rely on private therapy services. Even those whose level of need has been assessed as eligible for carer support, receive no additional assistance to access therapy services. Overall the range of services available to persons with SP is disjointed. SB adults are expected to manage their own health care needs. This may be an extremely difficult process for people who have grown up with the medical model of health care provision and who also may not have an appreciation of the benefits of ongoing therapy. Currently there is no coordinator in the SB association to direct persons to access appropriate support, therapy and advocacy. A trial physiotherapy program for adults with SB was well received, but there is no funding for follow up assessments or for further therapy. The association is also not funded for the provision of routine care and maintenance services provided to its members - this is paid for via fundraising by the SB association. Recently $1milion provided for respite care did not include the SB association. The Queensland SB association provides therapy services to its members as does the Victorian association with a visiting service. Functional/Rehabilitative research ____________________________________________________________________37

Created by Carey M. February 2002 Freemasons Centre for Research into Aged Care Services Curtin University of Technology, Perth, WA.

Much or the research literature is concerned with the outcomes of corrective orthopaedic surgery to treat musculoskeletal deformities associated with SB. The lack of continuity of specialist health services into the adult setting for people with SB (Stellman-Ward, et al, 1993) and the absence of cohesive services is noted world wide (Morgan, et al, 1999). There is agreement that the medical standard for people with SB is best provided in a multidisciplinary setting that aims to improve health as well as function (Kinsman, 2000). Adults with SB (and similarly patients with CP, PPS, ABI) are at risk of developing secondary health problems that are causally related to the primary condition and are to some degree preventable. The burden of care that might be reduced if preventive strategies were developed is not inconsiderable (Kinsman, 1996). The burden of care associated with the loss of function can be a source of long term financial and psychological cost to people ageing with SB and to their carers. A recent study reviewing the use of orthosis prescribed to enhance function and provide long term therapeutic benefit demonstrated improvements in patient function and an overall cost saving because of reductions in bone fractures and pressure sores (Roussos, 2001). Conclusion 1. SB is a complex disability and people with SB may exhibit a wide range of health and functional problems. 2. An intervention program that demonstrates the potential for preventing loss of function and / or functional improvement would lend support to funding requests to provide continuity of services for adults with SB.

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Created by Carey M. February 2002 Freemasons Centre for Research into Aged Care Services Curtin University of Technology, Perth, WA.

Appendix 4

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Created by Carey M. February 2002 Freemasons Centre for Research into Aged Care Services Curtin University of Technology, Perth, WA.

Working notes 4. Head Injury

Contact - Ron Baker Coordinator of Headwest Australia wide there is 6000 persons aged <65 years with Acquired Brain Injury (ABI) in nursing homes; a large proportion would be under 55 yrs. The major groupings of people with an ABI comprise of: MVA victims, amongst which males predominate with the highest numbers found in the 18-24 age group CVA - they comprise an older age group Alcohol and drug abuse ­ largest number in the mid 40-50 age group Sporting injuries Recreational drug use Other causes including tumour, infection and disease, near drowning, haemorrhage and disorders such as Parkinson's disease, Multiple Sclerosis, Alzheimer's disease. Types of difficulties these patients encounter Memory lapses or gaps Difficulty in planning and following through Problems in judgements Difficulty in abstract thinking (need simple concrete directions) Balance or spatial problems (eg judging distance) an inability to appreciate time uncertainty and lack of confidence confusion and lack of concentration, particularly when tired ) personality changes (mood swings, talks too much or too loud, anxiety, depression) speech or other communication difficulties seizures There are more than 20,000 people with ABI in WA There are many head injured persons who are not members of this association, or who do not receive any support for their condition and thus remain uncounted. Eg many homeless people are thought to have an ABI. Each year approximately 600 people in WA acquire a brain injury for which they require ongoing care There will be continuing and growing demand for the provision of care and services for those ageing with ABI. Services There is little in the way of services with limited funding for ABI.

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Created by Carey M. February 2002 Freemasons Centre for Research into Aged Care Services Curtin University of Technology, Perth, WA.

The nature of the ABI will determine the type of support required. Types of disability fall into these categories: sensory, physical and psychiatric development of new behaviours The acute care situation is good with the state head injury unit and then Shenton Park Rehabilitation Hospital. However long term care for these people is sadly lacking. Those who have a compensable ABI fare mildly better as they are able to buy the support they require and/or will have been in the system long enough to know what help and support they can obtain. Research Headwest is in the process of establishing a demographic database of all its clients/members. Headwest is planning to undertake research in collaboration with a tertiary institution when this has been established. Conclusion 1. This may be a difficult group to research as a whole and it would be necessary to look at sub groups of people with ABI. Eg the MVA group of ABI patients. It would also be necessary to consider some of the behavioural or personality difficulties these patients may experience and the need for researchers to have the required skills for dealing with them. 2. Whilst this group of people merit attention in terms of their existing and future numbers, the proposed intervention would need to be implemented by appropriately trained researchers.

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Created by Carey M. February 2002 Freemasons Centre for Research into Aged Care Services Curtin University of Technology, Perth, WA.

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