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POST - POLIO NETWORK (NSW) INC.
N E W S L E T T E R #56 a

Editor: Gillian Thomas        PO Box 888 Kensington
Email: gillian@post-polionetwork.org.au        NSW AUSTRALIA 1465
Website: www.post-polionetwork.org.au        Phone No: (02) 9663 2402

Patron: Professor Emeritus Sir Gustav Nossal AC CBE FAA FRS
President's Corner        Gillian Thomas

Welcome to the last Network News for 2002 which has plenty to keep you informed and entertained over the Christmas holidays. Members will also find the Network's 2001/2002 Annual Report and Financial Statements enclosed with this issue, together with our new Medical Alert Card.

At the Network's fourteenth Annual General Meeting held on 30 November the following members were elected to the Management Committee:
Gillian Thomas - President George Laszuk
Merle Thompson - Vice-President Bing Mak
Janet Malone - Secretary Peter Preneas
Bob Tonazzi - Treasurer Alice Smart
Anne Buchanan John Ward
Ann-Mason Furmage Mary Westbrook

Elizabeth Joyner did not re-stand for the Committee and we thank her for the time she has given the Committee in the previous two years. Elizabeth's expertise won't be lost to us, however, because she will continue to assist in the development of the Professional Resource Register. While not elected to the Management Committee, Neil von Schill will continue in the vital role of Support Group Co-ordinator and advisor on regional issues.

At the conclusion of the AGM, Merle Thompson officially launched our colourful new Medical Alert card. Made of laminated plastic and in a handy wallet size, the card succinctly describes the late effects of polio and the implications they may have for polio survivors. Your free copy is enclosed (attached to the back of the address sheet). If you would like a further copy, a stamped self-addressed envelope (or a small donation if you require a number) would be appreciated.

Following the lunch break, our guest speaker from Melbourne, Dr Keith Hill, gave a very interesting presentation on balance, including falls and how we might prevent them. Roving reporter Wendy Chaff has offered to write up his talk for the benefit of members unable to attend, and her report will appear in an upcoming issue of Network News. Copies of the slides used in the presentation are available on request, and the talk was also tape-recorded. Upon his return home, I received the following note from Dr Hill. “Congratulations on a very successful AGM on Saturday. All the hard work which goes on behind the scenes is often not reflected at these events, however it seems from an outsider's perspective that the work done by the NSW Network is extremely valuable for your members, as well as the broader range of stakeholders such as health professionals.”

Finally, it is with great sadness that we report the passing of John Westbrook after a lengthy illness.  John was a quiet man who was liked and respected by all who knew him.  After a private funeral, several Committee Members represented the Network at a moving memorial service which was a fitting tribute to a gentle man.  Our sympathy and thoughts go out to Mary and her family at this time.

Unless otherwise stated, the articles in this Newsletter may be reprinted provided that they are reproduced in full (including any references) and the author, the source and the Post-Polio Network (NSW) Inc are acknowledged in full. Articles may not be edited or summarised without the prior written approval of the Network. The views expressed in this publication are not necessarily those of the Network, and any products, services or treatments described are not necessarily endorsed or recommended by the Network.
The Power of Pilates

Vicki Negus, BSc Physiotherapy, Pilates Practitioner
Sonja Schulze, BSc(Hons) Physiotherapy, Pilates Practitioner

You may have seen increasing mention of “Pilates” in the media this year. Member Dr Rachelle Andgel recently forwarded me a copy of an assessment of her post-polio problems both before and after Pilates-based rehabilitation sessions. Rachelle wrote that she had received great benefit from Pilates therapy and she wished to share her positive experience with other members through Network News. Accordingly, I wrote to the Pilates practitioners she had worked with, Vicki Negus and Sonja Schulze from Balancé Physiotherapy & Pilates Clinic, and asked whether they could refer me to a paper describing this rehabilitation method. Vicki and Sonja kindly put together the following article for the benefit of members.

I draw your attention to the advice in the article to ensure that you have a thorough assessment resulting in individually-tailored exercises before you embark on a Pilates-based rehabilitation program.

If you would like more information please contact Vicki or Sonja at their St Leonards Clinic on (02) 9906 6911, or by email <sonschulze@ozemail.com.au>.

History of the Pilates Method

Joseph Pilates (1880 – 1967)
The Principles of Pilates

Alignment

“Each muscle may co-operatively and loyally aid in the uniform development of all our muscles” J Pilates
Static Posture - position of motionless body

Dynamic Posture - maintenance of alignment with motion

Pilates encourages optimal static and dynamic posture through feed forward adjustments. Clients repeatedly perform various functional movements with correct muscle sequencing and patterning. In time, the conscious control of correct posture in different movement sequences becomes the natural automatic process of functioning.

Centering

Pilates described the lumbar spine and pelvis as the “power house” of the body.

CORE STABILITY
Inner Unit = deep abdominals (transversus abdominis), deep back muscles, pelvic floor muscles, diaphragm Outer Unit = outer abdominals, outer back muscles, gluteals, shoulder girdle muscles

Key to Success of Pilates

Benefits

  1. ·maintains mobility of ribcage and hence thoracic spine
  2. ·improves respiratory function through increased lung capacity
  3. ·discourages use of accessory muscles in neck
  4. ·ensures spinal stability is maintained
  5. ·prevents increased pressure on the pelvic floor muscles (caused by holding the breath)
General Rule - Breathe out on the effort

Concentration
“Concentrate on the correct movements each time you exercise, lest you do them improperly and thus lose all the vital benefits of their value.” – J Pilates

Co-ordination
“Correctly executed and mastered to the point of subconscious reaction, these exercises will reflect grace and balance in your routine activities.” – J Pilates

Flowing Movement
“Contrology is designed to give you suppleness, natural grace and skill that will be unmistakeably reflected in (all you do).” – J Pilates

Precision
“Ideally our muscles should obey our will. Reasonably, our will should not be dominated by the reflex actions of our muscles.” – J Pilates

Relaxation
“Not too much, not too little.” – J Pilates

Application of Pilates in Post-Polio Syndrome
There has been no research into the effects of a Pilates-based rehabilitation program on management of post-polio syndrome. However, as the Pilates Method involves low-impact, non-fatiguing exercises, it can be an appropriate form of exercise for people with the syndrome, who are experiencing new muscle weakness and fatigue.

The exercises, when performed with adequate supervision, focus on the maintenance of correct alignment and postural control, therefore the Method is also safe and unlikely to cause injury. Some, even long-term, effects of the syndrome can be improved with an individually tailored program. The most significant changes will be seen in areas resulting from 'disuse' weakness, rather than from the original poliomyelitis.

Several studies have found benefits of low-impact exercise programs in post-polio syndrome. Ernstoff et al (1996) demonstrated that a program of low-resistance exercises for all major muscle groups, performed twice-weekly for six months, resulted in significantly increased strength in certain muscle groups. No injuries or complications were experienced, and only one subject complained of muscle fatigue.

People with post-polio syndrome should seek out Pilates Studios which perform a through assessment and tailor a specific program for each client. Pilates Studios use a variety of special equipment incorporating light spring-based resistance. There is no emphasis on heavy weights. The aim is to use the light resistance of springs and body weight to challenge the major postural muscle groups, which are commonly weakened in post-polio syndrome. It should be noted that the Pilates mat-work classes run in gyms are fitness-based, not rehabilitation-based. Therefore the exercises demonstrated are not individually-tailored, are not usually sufficiently supervised and corrected, and may be too difficult or inappropriate for a client with post-polio syndrome.

It is beneficial to seek out a Pilates Studio affiliated with a physiotherapist, as physiotherapists are trained in the assessment and treatment of neurological conditions. Physiotherapists can also advise on the use of non-Pilates equipment, such as therapy balls and wobble boards, and may incorporate these into a Pilates-based program. Physiotherapists can also take into consideration individual differences in exercise tolerance and physical ability.

The aim of using the Pilates Method in post-polio syndrome is to improve mobility, strength, balance and functional ability. This can enable people with post-polio symptoms to return to a greater level of function and enjoyment in exercise, work, hobbies and daily activities.

References
  1. Porterfield JA, DeRosa C: Mechanical Low Back Pain (2nd ed) WB Saunders USA P4 1998
  2. Dixon AJ: Problems of progress on back pain research. Rheumatol Rehab 12: 165-75 1973
  3. Bergquist–Ullman M, Larsson U: Acute Low Back Pain in Industry: A controlled study with special reference to therapy and confounding factors. Acta Orthop Scand 170 (suppl): 1-117 1970
  4. Kuchera ML: Gravitational strain pathophysiology. Secondary interdisciplinary world congress on LBP. San Diego, CA p 659-693 1995
  5. Richardson CA, Jull GA: Muscle Control-Pain Control. What exercises would you prescribe? Manual Therapy Journal 1. 2-10 1995
  6. Vleeming A et al: Movement, Stability & Low Back Pain. Churchill Livingstone, NY Ch 3 1997
  7. Hodges et al: Contractions of specific abdominal muscles in postural tasks are affected by respiratory maneuvers. J Appl Physiol 83: 753 – 760 1997
  8. Hodges et al: Contraction of the human diaphragm during postural adjustments. Physiol 505.2, 239-548 1997
  9. Ernstoff B et al: Endurance training effect on individuals with postpoliomyelitis. Arch Phys Med Rehabil 77: 843-848 1996
Doing All Right:

successful ageing concepts and implications for action in sustaining the health of an emerging population of women with long-term disabilities
This thought-provoking paper by Victorian member Margaret Cooper AM was presented at the 4th Australian Women's Health Network Conference “Politics, Action & Renewal”, Adelaide, February 2001, and is reprinted here with the Margaret's kind permission.

Abstract
Gender issues affecting ageing women are insufficiently studied (Heycox 1997). Women who are ageing with severe disabilities sustained earlier in life have been identified as needing a specialised model of assessment to inform adequate health management (Cooper & Temby 1998). Zarb (1996) proposed that people with disabilities would react to events of ageing similarly to the way they had reacted to the onset of disability. A pilot project was undertaken to explore the complexity of the ageing experience for women with long-term major disabilities, and to discern any common adaptive strategies used by these women to age successfully. Findings indicated the women remained socially active despite increasing disability. Their histories of adaptive abilities were reminiscent of the successful ageing criteria postulated by Baltes & Baltes (1990). Improved understanding of this group of women will indicate trends useful for informing further areas for research, health care and other forms of service provision for ageing women with long-term disabilities.

Introduction
A woman who incurs a permanent impairment has to adapt to her new altered physical or sensory self, to her community's perception of disability, and consequent reinterpretation of female identity by her social networks. This adaptation may be a precursor for how she will deal with the experience of ageing, which adds another dimension to her life. This paper explores the experiences of fourteen women who have been mobility impaired for many years, and who are now ageing. These women have all had to face major adaptational events. Their experience and current strategies for self care are explored for evidence of any relationship to the concept of successful ageing.

The word “long-term” is used to define the temporal context of the women surveyed in this project. All have been impaired for decades. Their lives have been affected as a consequence of community perceptions of their identities as disabled.

Successful ageing
Successful ageing has been defined many ways. The term can mean maintaining health without any loss of function (Rowe & Kahn 1987), and may include high cognitive scores, self-reported good health and living in the community (Jorm et al 1998). However this definition denies the reality of the social construction of ageing and the need to incorporate body frailties associated with increasing age.

Baltes & Baltes (1990:5) positively associate successful ageing with seven criteria: length of life, biological health, mental health, cognitive efficacy, social competence and productivity, personal control and life satisfaction. Baltes & Baltes suggested that given the wide variation in and between the variables involved in the study of successful ageing, any prediction regarding an individual, had to be relevant to that person's ability to meet their own goals given the norms in their own psychological and social realms. The ability to meet goals involves three key elements determined by the person and surrounding systems, selection of goals, compensation or use of alternate means to reach a goal, and optimisation or making the most of available functions (Baltes & Baltes 1990).

Ageing with long-term disabilities
People with severe disabilities are ageing in increasing numbers (Ansello 1988, Crewe 1990, Ansello & Eustis 1992, Trieschmann 1992). Australians ageing with disabilities are increasing (Wen, Madden & Fortune 2000). It is not known whether the type of impairment affects the individual's progress towards successful ageing. Successful ageing for this population needs definition to inform appropriate approaches to health care.

Baltes and Baltes model is useful when looking at the ageing of people with disabilities, as it is a process-oriented approach (Baltes and Carstensen 1996), and enables the concept of successful ageing for this population to be measured according to personal goal achievement rather than failing some arbitrary construct.

Zarb (1996) has postulated a disability/ageing career, which demonstrates the relationship of past and present events in the lives of people with disabilities. Experience of disability onset, events of ageing, and resource availability can be combined to give a picture of the individual's quality of life. Drake (1998) reported on a study on two groups; people who were ageing with and without disabilities. The concerns of both groups coincided to a considerable extent, a common concern being “their abilities to participate in the ebb and flow of everyday life” (p. 166).

The social construct of disability
Learning to live with impairment is a major adaptational event and many emotions are expressed by the individual. The emotions experienced are heightened by the significance of a threat to the person's ability to proceed with life choices, as emotions 'depend on the values, goals and beliefs to which we are committed and which are important in our lives (Lazarus 1991: 467). The more substantial the impairment, the more important the individual's social and material environment will become to the realisation or otherwise, of personal goals. Anger, despair, jealousy and other emotions all surface as the newly impaired person reacts to the magnitude of her impairment. Sometimes emotional reactions by patients in rehabilitation are blocked by medication or staff attitudes (Morris 1995) which can delay working through of issues. Adaptational tasks include coming to terms with loss of function, changes to appearance and renegotiating social and intimate relationships (Seymour 1998), redeveloping physical independence and care systems (Morris 1995), and dealing with prejudice against people with disabilities (Morris 1991). Women with disabilities face additional negative perceptions (Cooper & La Fontaine 2000).

Coping is defined by Lazarus as consisting of “cognitive and behavioural efforts to manage specific external or internal demands (and conflicts between them) that are appraised as taxing or exceeding the resources of the person” (p. 112). For example a newly impaired person copes with mobility issues by learning to manage assistive technology such as wheelchairs, white canes, wheelchair accessible cabs, and audio/tactile cues at public transport points. Disability onset may also mean learning to work with personal care workers or domiciliary therapists. Changes in the person's control over social roles may occur such as an altered relationship, transfer to alternative employment, and thus further adaptive behaviour is required.

The experience of people with disabilities is that disability is a social construct, and barriers to full participation are targeted for change. The aim of a social definition of disability was to move away from medical concepts (Abberley 1987). Australian activists brought the social model definition into Australia in 1982 (Cooper 1999). It read: “Disability is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers.” (Cited in Cooper & Strochnetter 1990:84)

Adaptation and women with disabilities
Women with long-term disabilities may face additional gendered obstacles to ageing successfully (Morris 1991, Zarb 1996, Temby & Cooper 1998). An ability to adapt to changed circumstances is another indicator of successful aging which “is but one expression of a generic transactional process, namely adaptive competence … which is a generalised capacity to respond with resilience, to challenges arising from one's body, mind, and environment (Featherman, Smith and Peterson, 1990, p. 53).

As a woman ages she has to adapt to many changes such as menopause, children leaving home, perhaps the loss of secure employment, and the onset of ageing which may bring a susceptibility to such conditions as osteoporosis, or reduced visual and aural acuity. However many researchers have found ageing people have potential to improve their health and psychological status (Baltes & Carstensen (1996).

Exploratory study
The purpose of this study was to explore the meaning and experiences of ageing for women who had lived with disability for a long time and were now facing the ageing process. Fourteen women volunteered by answering flyer advertisements on two disability related internet information lists and in the Victorian Paraplegic and Quadriplegic Association newsletter.

A structured interview was conducted with each individual, incorporating a questionnaire designed to discern historical information about the primary disability, initial and long-term adaptive strategies, and current social status information. A Quality Of Life Questionnaire was also used to assist in the assessment of the individual's satisfaction with their immediate status.

Results
Apart from broad descriptive data, the results are organised under Baltes and Baltes variables of successful ageing.

Thirteen women owned their own homes or units outright or shared ownership with a current partner. Two had bought units within retirement villages, one paid rental to a retirement complex.

Four women lived with their spouses, one was divorced, two widowed, and seven had lived single lives.

Only one participant lived on wages or salary. Three women were financially supported by their husbands. One of these contributed to her partner's business, the other two earned some money by occasional casual work. One woman lived on superannuation, while another had partial superannuation. The remaining eight received Disability or Age pensions. Older women in this study had less financial security because education and employment opportunities had been less available for them. Most of their employment was undertaken during a time where superannuation for women was unavailable or consisted only of provident fund contributions.

Participants all had a major adaptational change caused by the onset of impairment and disability in late adolescence or adulthood. Four women who incurred impairment as children did accept they had some degree of permanent impairment but did not perceive themselves as disabled until secondary effects occurred in their fourth decade of life. Two women were paraplegic as a result of spinal cord injury or transverse myelitis. Twelve women had a degree of paralysis from polio. The latter group all had an increase in symptoms consistent with their self-defined post-polio syndrome.

Length of life
The age span of the participants was between fifty-five to eighty-eight years, most being in their sixth decade.

Cognitive efficacy
This factor was explored by the women's self-reports of their education, paid and unpaid employment histories. The participants had varying degrees of education from eighteen months primary school only to university level. Participants had varied employment from printer's assistant to tailoress to nurse educator. Many had held more than one job.

Social competence and productivity
Current involvement with voluntary work by participants was taken as one measure of this variable. Eleven participants remained actively employed by unpaid voluntary work, once their paid work had ceased. Two women were predominantly involved with their extended families. One of the latter had become principal carer for a spouse with recent moderate cognitive impairment. One woman kept a relatively small network as compared to the others. The women updated their skills by committee participation, attending social groups, reading newsletters, networking with friends and acquaintances, and six had undertaken short courses within the last year.

Biological health
Participants all had mobility impairments caused by paraplegia or polio. Five used wheelchairs fulltime and three more used wheelchairs or scooters outside the home. Five used personal care attendants regularly to assist with activities of daily living.

Health issues were self-reported by some women. Some were able to relate these directly to their impairment. Their concerns included increasing weakness, fatigue, and non-specific pain. Health matters perceived as related to ageing, or ageing with female biology included osteoporosis, auditory loss, cardiac problems and cancers of the breast. Women who reported visual loss and leg ulcers were confused about whether their issues related to initial impairment, female biology or ageing.

Mental health
This criterion was explored in relation to each participant's reported coping strategy at the time of the impairment and their reported coping with ageing. No clear pattern of repeated adaptational strategies emerged. Women who had been impaired during childhood had clear dramatic memories of their traumas, and their reports were evocative of unresolved feelings. The onset of new symptoms in middle age elicited strong emotional responses from this subgroup. Most participants reported attention and memory difficulties. One participant reported a history of depression requiring current medication.

Personal control
Participants rated control over their own lives as extremely important. The achievement of personal goals was very important to each. When discussing their situations each woman stressed how much she could do for herself, however each was aware of their own immediate physical stress in being independent. All were aware of relevant community services but most used only home help or a handyman/gardener service.

The Quality of Life Scale was used to was used to elicit participants' perceptions. A mean score of 24.5 indicated a high degree of satisfaction with life. A similar high score of 28.7 reflected the value attached by the women to their independence. A slightly lower score of 23.3 was given to social belonging and community integration.

Discussion
This small pilot study has shown women ageing with long-term disabilities who have learned to live with major physical changes from the onset of impairment. Application of successful ageing concepts (Baltes & Baltes 1990) is possible.

There is little research on the longevity of people with physical disabilities (Wen et al 2000). Their biological health may be considered compromised. All have experienced new impairment and health conditions, cardiac problems and osteoporosis for example, which may be due to the ageing process. Alternatively some of the women may have experienced secondary complications of their primary impairment, such as post-polio syndrome (Cashman 1987) or late effects of spinal cord injury (Whiteneck et al 1992).

Their mental health and cognitive abilities appear unimpaired. One woman had medication for depression. Although attention and memory difficulties were reported by all participants, this may be within normal limits for ageing women. Recent work by Hazendonk (2000) found there was little neuropsychological evidence to support this contention of memory loss by people who had polio, and suggested depression may be an alternative explanation. Worth considering also is the exposure of these women to reports of memory loss in disability newsletters.

Social competence and productivity are positive findings for this group. The number of involvements in committees, and social groups was indicative of successful social interactions.

Personal control was a value strongly held by all women. While this is a successful ageing criterion, there are negative aspects. Some participants appeared to be denying their need for assistive services, in an attempt to minimise intrusion by helpers. The title of this paper was derived from a common comment of participants. Denial of need may become a maladaptive behaviour if the individual suffers worsening of a condition as a result. In this small study there appeared to be a trend which indicated women, who had perceived major negative aspects to the way their initial impairment was treated, were less likely to seek help for health issues in later life. Zarb (1996) suggested behaviour learned during the onset of disability might recur during ageing events.

Life satisfaction was expressed by all participants and all have retained personal goals and objectives.

Gender discrimination issues were expressed by all women who had been employed. Three women felt they experienced disability discrimination by being unable to access screening facilities for breast and bowel cancer. The social activity of older women (Heycox 1997, Day 1990) and women ageing with disabilities (Armstrong 1991) may be underestimated. It would be interesting to research whether males are as socially active.

To summarise, Baltes and Baltes 1990 successful ageing criteria are useful in the evaluation of the status and experience of women ageing with long-term disabilities. These criteria might be used to inform assessment models and practice developments for health maintenance of this growing population.

References

Abberley, P (1987), Oppression and Social Theory of Disability. Disability, Handicap & Society. 2(1). pp 5-19.

Ansello, E (1988). The Intersecting of Aging and Disabilities. Educational Gerontology 14. pp 351-364.

Ansello, E & Eustis, N (1992) A Common Stake? Investigating the emerging 'Intersection' of Aging and Disabilities. In (eds.) Aging and Disabilities: Seeking Common Ground. New Jersey: Baywood.

Armstrong, MJ (1991). Friends as a Source of Informal Support for Older Women with Physical Disabilities. Journal of Women and Aging. 3(2). pp 63-83.

Baltes, P & Baltes, M (1990). Psychological perspective on successful aging: The model of selective optimisation with compensation. In (eds. Baltes, P & Baltes, M (1990). Successful Aging: perspectives from the behavioural sciences. Cambridge: University of Cambridge. pp 50-93.

Baltes, M & Carstenson, L (1996). The Process of Successful Ageing. Aging and Society. 16. pp 397-422.

Cashman N, Maselli R, Wollmann R, Roos R, Simon R, & Antel J (1987a). Late Denervation in patients with Antecedent paralytic poliomyelitis. The New England Journal of Medicine, 317(1), pp 306-48.

Cooper, M (1999) The Australian Disability Rights Movement: freeing the power of advocacy. Unpublished Master's thesis: University of Melbourne.

Cooper, M & La Fontaine, M (2000). Issues Facing Women with Disabilities. In (eds.) Frohmader, C & Storr, A Taking The Lead: A Leadership and Mentoring Kit for women with Disabilities. Canberra: Women With Disabilities Australia.

Cooper, M & Strochnetter, C (1990). Policies & Statements. Hobart: Disabled People's International (Australia).

Cooper, M & Temby, D (1998). Towards healthy ageing of women with disabilities. Australian Journal of Primary Health – Interchange Vol. 4 No. 3 1998 pp 112-118.

Crewe, NM (1990). Ageing and severe physical disability: Patterns of change and implications for services. Educational Gerontology, 16, pp 525-534. Reprinted Int. Disability Studies 13, (pp 158-161).

Day, A (1990). A Model of Successful Ageing: Concept and Measurement. In (ed.). Lefroy, R Proceedings of the 25th Annual Conference of the Australian Association of Gerontology Canberra 1990. Melbourne: Australian Association of Gerontology. pp 112- 115.

Drake, R (1998). Understanding Disability Policies. London: McMillan.

Featherman, D, Smith, J & Peterson, J (1990). Successful aging in a post-retired society. In (eds. Baltes, P & Baltes, M (1990). Successful Aging: perspectives from the behavioural sciences. Cambridge: University of Cambridge. pp 50-93.

Hazendonk, KM, & Crowe, SF (2000) A neuropsychological study of the postpolio syndrome: Support for depression without neuropsychological impairment. Neuropsychiatry, Neuropsychology, and Behavioural Neurology. 13(2). pp 112-118.

Heycox, K (1997). Older Women: Issues of gender. In Borowski, Encel, S & Ozanne, E (Eds.) Ageing and social policy in Australia. pp 94-118. Cambridge: Cambridge University Press.

Jorm, A, Christensen, H, Henderson, A, Jacomb, P Korten, A, & McKinnon, A (1998) Factors Associated with Successful Ageing. Australasian Journal on Ageing. 17(1). pp 33-37.

Lazarus, R (1991). Emotion and Adaptation. New York: Oxford University Press.

Morris, J (1991). Pride Against Prejudice. London: The Women's Press.

Morris, J (1995). Able Lives. London: The Women's Press.

Rowe, J & Kahn, R (1987) Human ageing: usual and successful. Science 237 pp 143-149.

Seymour, W (1998). Remaking the body, Rehabilitation and change. St Leonards: Allen & Unwin.

Trieschmann, R (1992). Psychosocial research in spinal cord injury. Paraplegia, 30(1), pp 58-60.

Wen, X, Madden, R & Fortune, N (2000). Disability and ageing. Australian population patterns and implications. Canberra: Australian Institute of Health and Welfare. AIHW Cat. no. dis. 19.

Westbrook, M (1996). Early Memories of Having Polio – Survivors' Memories Versus the Official Myths. Proceedings of the International Post-Polio Conference 'Living with the Late Effects of Polio'. Sydney: Post-Polio Network (NSW) Inc.

Whiteneck, G, Charlifue, S, Frankel, H, Fraser, M, Gardner, B, Gerhart, K, Krishnan, K, Menter, R, Nuseibeh, I, Short, D, Silver, J (1992). Mortality, morbidity, and psychosocial outcomes of persons spinal cord injured more than 20 years ago. Paraplegia, 30, pp 617-629.

World Health Organisation (1980). International Classification of Impairments, Disabilities and Handicaps. Geneva: WHO.

World Health Organisation (1999). ICIDH-2 Beta-2 draft. Full version. International Classification of Functioning and Disability. Geneva: WHO.

Zarb, G (1996). The dual experience of ageing with a disability. In Swain, J, Finkelstein, V, French, S, & Oliver, M (Eds.) Disabling Barriers – Enabling Environments. London: Sage Publications in association with the Open University. pp 186-195.

Program of Appliances for Disabled People (PADP)

In Newsletter Issue 48, February 2001, we reported that a new PADP Policy had come into effect on 1 January 2001. Almost two years down the track we thought it timely to give you an update on how the new Policy and related procedures are working. As so many Network members use a range of appliances it is important for you to be aware of how to access the Program and what types of appliances are available.

The NSW PADP Advisory Committee meets every quarter, and the Network is represented by Gillian. Gillian also participates in the caucus of disability organisations which meets before every Advisory Committee meeting to discuss emerging issues.

To be eligible for PADP assistance you have to be a permanent resident in NSW with a long-term or permanent disability and not be eligible for equipment under other government programs, from compensation and not be eligible for equipment from hospital loan schemes.

While this means that virtually all our members may be eligible there are priorities depending on income. Band 1 includes people in receipt of Pensioner Benefit or Health Care cards, rising to band 4 for those with incomes above $39,941 single or $67,899 for a couple or family. Applicants in Bands 1-3 have priority. People who receive assistance are required to make one payment per year of $100 towards the cost of equipment received and some higher income earners may be required to pay up to 20% of the costs.

A significant change is that a new Equipment List is in the final approval stage and will soon be launched. The List will no longer list specific items but rather give generic categories. For example, a section called Orthoses and Footwear describes orthoses as “aids that support the function of any part of the body by their external application”. Items included under this category are orthoses and footwear to support a long term or permanent disability, depth shoes, surgical footwear and callipers. Up to two pairs of shoes can be supplied each year – an increase from one pair and the Network's submissions were partly responsible for this change. Polio survivors might require items from several categories such as mobility aids, toileting and showering aids, and transfer aids.

This year's budget was $15.7m plus $2.5m specifically for supply of oxygen. It is hoped that next year's budget will see a significant increase. The Department of Health needs to be aware of the extent of the need for equipment. Many people may not apply because of previous rejections and known or believed waiting lists but it is only by applying that the extent of the need can be quantified. Don't be put off from applying because you need a high-cost item – applications are prioritised with regard to how supply will assist in a person's participation in the community.

It is very important that you let us know if you have any problems accessing the PADP scheme or receiving equipment. We will take up any systemic issues you raise with the Advisory Committee or, if indicated, directly with the Department of Health.

Part 2

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