WWDA Submission on the Development of the National Strategy for Ageing Australia
In 1998, the Minister for Family Services (Commonwealth Government) called for submissions to inform the development of the National Strategy for Ageing in Australia. This is a copy of Women With Disabilities Australia’s (WWDA) submission to the National Strategy for Ageing in Australia, which was prepared by Margaret Cooper on behalf of WWDA. Copyright WWDA 1998.
Women With Disabilities Australia recommends that information gathering strategies be developed in order to determine the numbers of people with longterm disabilities. Current information on aging with disabilities is scanty. The numbers of people who have lived with longterm disabilities are largely unknown in Australia. The Australian Bureau of Statistics (1993:2) reported 18.0% of the population had a disability. 78.7% of those with disabilities, or 14.2% of Australians, were classified as handicapped, i.e. limited in ability to perform one or more of daily living tasks in self-care, mobility, verbal communication, schooling or employment. 44.2% of all persons with disability were 60 years old or more and 47.6% of those classified as handicapped were also 60 years old or more. There is no information about the age of the person at the onset of disability, or the length of time an individual had been disabled.
Acute care hospitals, regional geriatric assessment teams and extended care centres, which are involved in the care of some people with longterm disabilities, do collect data on admission diagnoses. However these diagnoses are of the presenting problem, for example fractured femur and do not reflect associated information such as fractured femur in a patient with cerebral palsy. Certainly this stream of data collection could be refined to garner the extra information required.
Alternatively it would be possible to use a casefinding process such as Ashman et al 1993 used when studying older Queenslanders with intellectual disabilities. A survey approach was used by the Youth and Family Services Division of the Victorian Department of Human Services (1996:4) when it was decided to redevelop polio services in the state, recognising the need to look at “the impact on demand for services, and the nature of services required, of the late effects of polio.”
Women With Disabilities Australia recommends research to assist in the development of appropriate lifespan care models to help those with physical disabilities who are now ageing in unprecedented numbers. Crewe (1990:158) states that “for the first time in history large numbers of people are living for 30, 40, and more years after contracting polio or sustaining spinal cord injuries”. Without strategies to assist ageing people with disabilities to stay well and involved in their social lives, secondary complications may develop, increasing dependency and disability.
An American researcher of ageing in people with cerebral palsy, Margaret Turk (1996:3) has stated “Secondary condition prevention requires an understanding of the related risk factors, symptoms, appropriate interventions, and the public health prevention model”. The Australian researcher Annison et al (1996:63) has warned of the dangers inherent in inadequate management of people with longterm disabilities who are ageing, such as undetected serious illness, unnecessary dependency, decreased social interaction, and polypharmacy.
Women With Disabilities Australia recommends that the interest already shown by people with disabilities in managing their health better, be used to assist health workers develop health care models. Interest by citizens with disabilities has been most visibly organised by people who have experienced late effects of polio, after an initial infection several decades ago. These citizens began reporting new symptoms of new weakness, respiratory failure, fatigue, pain and stiffness, unusual sensitivity to cold, swallowing and gastrointestinal dysfunction, signs previously associated with morbidities associated with ageing. But affected people were often only in their fourth or fifth decade of life.
Most people experiencing the unexpected symptoms were alarmed at their symptoms and were unable to get help from general practitioners who, thanks to the Salk and Sabin vaccines, had often never seen a patient in the acute and rehabilitation stages of poliomyelitis. There have been a small number of medical studies (Campbell et al 1969, Mulder et al 1972, Anderson et al 1972, Maynard 1985, Cashman et al 1987, Howard et al 1988) into the late effects of polio, but the differing theories have not been confirmed or disproven, leaving the person with primary and secondary disabilities vulnerable to inadequately researched advice about health maintenance and the avoidance of secondary conditions.
People with spinal cord injury of long duration, and people with cerebral palsy, are also claiming to have difficulties with secondary conditions and ageing. Just as happened with the post polio groups reports are surfacing first in consumer controlled newspapers and in disability specific conferences about the difficulties of managing ageing and long term disability. Maddox (1992:68) reported on a United States of America Ageing with Spinal Cord Injury conference. Concerns presented included fatigue, osteoporosis, reduced lung function, and gut problems. Gerhart et al (1996:21) reported on a British longitudinal study of 200 spinal cord injury survivors, which found interim results of rising incidence of fatigue, urinary tract infections, respiratory infections, to name a few; however other problems such as the incidence of contractures, declined with age.
Women With Disabilities Australia recommends that research also includes ways of assisting people with disabilities to adjust to ageing and possible increased dependency. Gerhart found that psychological wellbeing was an important predictor of development of coping strategies in people with spinal cord injury.
Ageing people with disabilities with new disability management issues on top of long term impairments, may need assistance to reach psychological equilibrium again.
Westbrook (a. 1992:54) described the time bombs, or feelings of guilt, sadness, anger and abandonment that happen at the onset of polio, which are carefully repressed until a new weakness occurs. Suddenly the affected individual may re-experience these unpleasant memories and emotions with all the intensity of childhood. Westbrook (b.1996) also has related the emotional abuse suffered by children exposed to long periods of hospitalisation during earlier decades. Frick and Bruno (1986) wrote about the stresses on a person confronting additional disability and suggested a number of strategies. Professional or peer counselling may be essential for individuals and their families to achieve adaptation to new disabilities.
Women With Disabilities Australia recommends that health professionals be trained in working with a social model of disability. Perhaps delayed recognition of the need to manage ageing in people with longterm physical disabilities is due to a mindset described by Temby and Cooper (1996:71), where the health care professional, used to assessing people with disabling conditions as chronically dysfunctional according to a biomedical model, leads the unsophisticated into focussing on the patient’s disability, rather than looking at what secondary conditions may be ameliorated and what roles the person can still perform. The hapless client “can experience the impact of this model as a sense of powerlessness, rescinding oneself to the role of patient, and a reduction of personhood to the sum of the part that is hurting, not working, or that is harbouring some infection.” This view can lead the health worker and patient away from developing successful strategies to cope with ageing, longterm physical disability and sometimes additional impairments.
Women With Disabilities Australia recommends particular attention be paid to the health of ageing women with disabilities who may be considered even more at risk of secondary disabilities. Welner (1996:86) wrote “women with longterm disabilities enter menopause with many years of decreased weight bearing and limited participation in aerobic activities…Little is known regarding the quantitative impact of disabilities on the menopausal state. It is important to determine whether, and to what degree, hormonal intervention will be beneficial to this vulnerable population.”
Health wishes expressed by women with disabilities are the same as anyone else, incorporating a notion of wellness, and access to resources, self- management, and informed choice. Nosek (1996:20) stated “where individuals lie along the continuum toward wellness is determined by the extent to which they possess competence and resilience while encountering wellness-enhancing social systems and empowering policies and conditions.” Temby (1996:vii) surveyed 141 women with disabilities, who were in contact with the Victorian Women with Disabilities Network. A questionnaire was completed by these women. Temby reported “the factors most often mentioned as influencing their sense of well-being were loneliness and depression.”
Women With Disabilities Australia recommends that any programme or research on this topic must involve a participatory action research model, or at the least, consultation with ageing people with disabilities, taking into account the special characteristics of people with long term disability as described by Crewe (1990:161) “psychological adaptation to disability and change, development of expertise with respect to their own conditions, and accumulation of knowledge about systems and services.”
Women With Disabilities Australia recommends that research include longitudinal studies of people with long term disabilities in order to determine what strategies have already been adopted by surviving aged people with disabilities. This may assist with development of immediate strategies to assist those who are in an earlier stage of ageing to have appropriate health maintenance, alleviation of secondary disabilities and, above all, an enjoyable old age.
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