‘The Sick State of Health for Women with Disabilities’
A Paper written and presented by Sue Salthouse on behalf of Women With Disabilities Australia (WWDA) to the Australian Women’s Health Network (AWHN)5th Australian Women’s Health Conference, 20 – 22 April, 2005, Carlton Crest Hotel, Melbourne. Copyright WWDA 2005.
I would like to begin by acknowledging the people of the Woiworung nation on whose land we stand today.
The organisation I represent – Women With Disabilities Australia (WWDA) – is the peak organisation for women with all types of disabilities in Australia. The rationale and critical expediency for our existence arises from the reality that women with disabilities continue to be largely disregarded by the disability movement, the feminist movement and all levels of government. Yet we constitute 10% of the population – that is nearly 2 million of us. In the emancipated twenty-first century WWDA should not need to exist. Unfortunately when health services are examined in the context of gender and disability it can be seen that women with disabilities do not yet fare well. For women with disabilities, health has gender, disability and human rights components and these are the very areas where WWDA operates to move forward an agenda for equity and inclusion.
When we begin to examine the health experiences of women with disabilities, it is plain that we need to simultaneously consider at least health and gender. Their experiences of the health system are very much affected by social constructs around both gender and disability. To a large extent those experiences have idiosyncratic features precisely because they are frequent users of that health system and use many facets of it.
Women’s perceptions of health and their attitudes to their bodies and wellbeing are manifestations of the affects of social attitudes to gender. The fact that we are here at a gender specific women’s health conference attests to this. For the able bodied there are specific women’s health policies, programs and practices which are directed at areas where gender and health issues overlap (Meekosha 2001).
As far as health is concerned WWDA seeks to draw attention to the more complex intersection of health, gender and disability – an area where we contend there is a lack of activity at policy and practice levels. This is a space which our constituents occupy and it constitutes something of a ‘black hole’ as far as their health and wellbeing is concerned.
Women with disabilities do see their health as more than just a medical matter (Temby 1997, Nosek 1996 in WWDA 2002). It involves achieving a feeling of wellbeing and has physical, social, emotional and spiritual components. Unfortunately as far as women with disabilities are concerned health services are in a sick state – and achieving a holistic state of wellbeing remains a challenge for most.
It is necessary to look at where the challenges begin.
The strong correlation between low socio-economic status and poor health is well chronicled. The recent Royal Australasian College of Physicians Policy Statement on health and socio-economic status, found that premature death rates among the poor have not improved in line with those who are better off and that this health discrepancy has been growing over the past 30 years. This Statement spells out the fact that we are diminished as a nation whilst we allow the existence of a chasm between the health haves and have-nots. It acknowledges the link between good health and full participation in society. Those individuals affected by the intersection of poverty and poor health have lives which are diminished in quality. Women with disabilities are over represented here.
There is a further direct economic cost to the country. The incidence of ill-health which arises as a direct consequence of social disadvantage costs billions. The greater this inequity the more financial pressure will come to bear on the Australian health care system (Ibid.). One would think that the cost factor would trigger immediate urgent government action, even if a benevolent concern for the poor does not. However, this seems not to be the case as this Statement follows hard on the heels of so many reports of like ilk, such as the Australian Institute of Health and Welfare’s (AIHW’s) Health Inequalities Monitoring Series No. 1 (2004) which spelt out the direct links between socioeconomic disadvantage and early mortality.
It is not the standard of health care, or the number and quality of health services which are in question here, but the ability of people to get access to health facilities. Women with disabilities are fundamentally affected by a range of access issues not all of which are related to poverty.
You may wonder at my fixation on poverty. It arises because of the over representation of women with disabilities in the low income brackets of society. More people with disabilities live in poverty than their able-bodied peers. The median gross personal income per week for the former group is $255, just over half that of the latter ($501). Income decreases as the severity of disability increases, so that those with a profound core-activity limitation have a median gross personal income per week of $200 (ABS 2004).
Forty-seven percent of women with disabilities are on some sort of pension, compared to 39% of men with disabilities, and just 20% of able bodied women. They are underrepresented in receiving business income compared to both these groups, and underrepresented in waged and salaried positions with only 32% receiving income in this way compared to 56% of their able bodied sisters and 38% of men with disabilities. This is where gender bias bites. Women with disabilities now achieve educational outcomes which are equivalent to those of their male counterparts. However, their ability to gain employment is much more limited. If lucky enough to break through this barrier, their ability to earn a wage comparable to that of their male counterparts is limited (Ibid.).
Let us translate those percentages to actual numbers. Nearly 29,000 women with disabilities have median gross personal incomes of less than $200 per week, with a further 18,000 marginally better off with incomes between $250 and $450 per week (Ibid.).
The over representation of women on a pension, their under representation in paid employment and accompanying under representation in the higher wage brackets is not surprising given the two-pronged discriminations operating. It is the reality for many women with disabilities that they exist on extremely low incomes, whilst having high disability and health related living costs.
What further interests me about poverty as far as women with disabilities are concerned, is that it is the backdrop to many other barriers to wellbeing. However, poor women with disabilities do not have a monopoly on those barriers. All women with disabilities face major challenges in achieving health and wellbeing.
3. Barriers to wellbeing
3.1 Low Self Esteem
Who is this woman with disabilities whom we are trying to keep in good health? She is one who has a very poor perception of herself. And this low self esteem extends across all income groups for women with disabilities. It applies to women with congenital disabilities, those with acquired disabilities and those with degenerative conditions. When we consider women with congenital disabilities, most can empathise that the cumulative affect of a lifetime of overt and covert ego-blows dealt out by society could prevent the development of a healthy self esteem. We may pretend that society is enlightened and tolerant towards people with disabilities but societal values remain very much those of exclusion and elimination. Many cues are subliminal but the messages are nowhere more forcefully drilled home than in the cinema. Here, films proliferate which highlight the disabled as victims either only worthy of elimination or of disproportionate adulation as they triumph over tragic affliction. Neither depiction is healthy or worthy of an Oscar!
For those with acquired disability, the acquisition is very often accompanied by a rapid erosion of self esteem. The reality is that of dealing with a world which excludes, albeit with a conciliatory smile, women who used to be in charge but now need support in some aspects of their lives. Rebuilding one’s life in a new form to accommodate an altered physical and/or mental state can mean the emergence of an element of uncertainty about the ‘core self’.
Women with disabilities as a group are amongst those with the lowest self esteem (WWDA 2002) In this context, the correlation between low self esteem and a high incidence of violence must be broached. The incidence of violence and sexual assault against women with disabilities is much higher than for any other group in the population, regardless of age, race, religious affiliation and sexual preferences (Sobsey 1988). Women with disabilities are likely to be in violent relationships which exacerbate their disability and may have caused it. Violence can be a major factor in their ill health.
The effect of this low self esteem is to make the woman believe that her health is of little importance, or that she is not worthy of ‘causing problems’ for the people who have to help to get her to a medical appointment, those who have to help her when she arrives and those with whom she must consult.
Gender bias still puts women in the carer role. In fact the latest results in the 5-yearly survey of Disability, Ageing and Carers (ABS 2004 a) notes that 71% of primary carers are women. This causes a woman to be self blaming in many instances should the role be reversed. These factors combine to make a mindset which means that women with disabilities are the most vulnerable in euthanasia debates. It is a debate going on in the heads of many women with disabilities all the time. They are most likely to ‘wish not to be a burden’ on family or society. As I write, the 7-year tussle of the Schindler-Schiavo families in the US is being played out across the Australian media waves. The only-slightly-subliminal message is that not even a presidential intervention can decree a life worthy of living. Where does this leave a woman with disabilities who feels she is ‘in the way’?
3.2 Access to Information
How do we in the mainstream community get our information about health services? In today’s information age the sources are many. However, a large number of women with disabilities are limited to receiving only that information which carers and support workers may care to pass on. This means that women with disabilities are often information poor with regard to health, particularly in relation to issues such as: managing menstruation, contraception, exploitative relationships, violence, sexually transmitted diseases, sexual assault, menopause, late onset incontinence, osteoporosis, sexuality, reproductive health, self-management, fatigue, increased dependency, and parenting (Temby 1996, Cooper & Temby 1995, WWDA 1998).
In considering how to reach women with disabilities the organisers of health services also need to consider how to reach the service providers and support workers who interact with women with disabilities. These problems are beginning to be addressed. There are notable examples here in Victoria with the work being done by Women’s Health Victoria in collaboration with the Victorian Women with Disability Network (Waters 2004) and through various health networks, both metropolitan and regional.
WWDA is also pleased to note that more information is being made available in accessible formats. Here too there are many good examples in Victoria, with the websites of many government and non-government organisations adhering to accessibility guidelines such as the W3C and Bobby Approved conventions so that they are accessible to screen reader programs used by the blind and vision impaired. Increasingly, printed information is available which uses icons, simple diagrams and plain English. WWDA is optimistic that these are permanent gains and that further improvements are in the offing.
Getting the information into accessible formats is only part of the solution. It also needs to be distributed to reach women with disabilities – direct to the women and through disability organisations and service providers, carer networks, group homes, refuges and shelters, as well as through all health system channels.
3.3 Educating Others
Health and disability professionals, carers and support workers will only pass on information if they see the woman with disabilities in their care as a whole person. There needs to be increased recognition that a woman with disabilities has health needs that are separate to her disability, yet which need to be treated in conjunction with her disability. Education in this regard needs to be directed to all involved – specialists, general practitioners, health professionals, service providers, support workers, carers. Underpinning all this, is a need for added awareness that the woman at the centre of all this proposed consciousness-raising needs to be empowered to be attuned to her own body, and to have her interpretations of its functioning listened to.
3.4 Physical Access to Services
All health facilities need to be accessible for people with disabilities. They are not. WWDA is aware of some improvements but on the whole there is an abysmal lack of accessible surgeries and health facilities. This applies in particular to private practices. There needs to be changes at the accreditation stage of approval of all types of practices, and at all health facilities, so that accessibility is ensured. Accessibility features should include accessible parking, accessible toilet and an accessible examination table. A national survey undertaken in 2003 of 3,553 surgeries to check for the presence of the latter (King 2003) showed that there were 14,008 fixed height beds, compared to only 719 adjustable height examination beds. This represents just 4.9% of the total examination beds in the surgeries surveyed. The actual availability of adjustable height beds in surgeries may be much lower, with the statistics skewed because some clinics have a number of such tables. GPs may use cost to justify the lack of adjustable height examination tables in their surgeries. However, their counterparts in sports medicine already have almost 100% availability (Victorian Network on Recreation and Disability 2005).
For women with disabilities the concept of ‘doctor shopping’ takes on new meaning, as we seek to find a doctor who meets our health needs located in a surgery which meets our access needs.
All of us can relate to having a hectic day, where a visit to the doctor was just ‘fitted in’ to a busy schedule. But for many women with disabilities, keeping a medical appointment can be a logistical nightmare involving coordinating taxi and extra carer, juggling shower days so a hoist will be available, and hoping all these will come together so that you make it to the doctor’s door. Woe betide you if more than one health professional is involved in the consultation, and this is often the case. Such a visit may be scheduled many weeks in advance, so that if one factor fails, rescheduling can mean a long delay. In the intervening period, a minor condition can progress to crisis point. Even if the doctor bulk bills, the cost of such an excursion can be considerable and is a barrier in itself.
In fact, logistics may present such a barrier that taking no action is the easiest option, so that crisis ‘management’ becomes the norm. Current practices in medicine preclude home visits which in more primitive times would have eliminated many of these problems.
4. Population Screening Programs
All of the factors I have just outlined also contribute to limiting the access to preventative health services for women with disabilities. This can mean that all their health management is done in a reactive rather than pro-active way. Such a method of management comes at a cost – both to the individual, to society and to the economy. WWDA believes that women with disabilities should have access to preventative health services to at least the same degree as their able bodied counterparts.
Population-based breast, cervical and bowel cancer screening programs are reducing the mortality rates for these cancers (AIHW & AACR 2003). For women, breast cancer is the most common cause of death from cancer and accounts for 16% of deaths from cancer, whilst colorectal cancer accounts for 13% (ABS 2004 b). Cervical cancer is the 18th most common cause of cancer mortality in women (AIHW 2005).
The latest Australian Government’s report on Breast Screening (AIHW 2005) shows that the participation rate of 57.1% does not vary across socio economic groups. Good news for women with disabilities clustered in the lower socio economic strata. This rate is significantly lower for Aboriginal and Torres Strait Islander women (34.8%) and women from Culturally and Linguistically Diverse background (47.4%). What is the participation rate for women with disabilities? We do not know. No data is collected. For all women we further know that the incidence (or detection) of breast cancer rose, but that mortality from this form of cancer declined between 1987/8 and 2001/02. Is this so for women with disabilities? Once again we cannot tell you. No statistics are collected for participation, incidence or mortality for women with disabilities.
Similarly the latest Cervical Screening Report (AIHW 2004) shows that the participation rate is 61%. The incidence of cervical cancer has halved between 1989 and 2000, with the mortality rate similarly reduced by 61% over the two decades up to 2002. Of the 227 deaths from this form of cancer in 2002, how many were women with disabilities? We do not know. Once again there is a lamentable lack of data about women with disabilities.
On a positive note, many states and territories now include women with disabilities on their Breast and Cervical Screening advisory boards, and produce excellent material both for consumers and for health professionals and disability workers. However, there is no means of assessing whether this material is effective. Do more women with disabilities now present for screening? We do not know.
Similarly data is not available on the participation rate of women with disabilities in colorectal screening. Neither do we know the incidence and mortality rates.
Pertinent programs and policies cannot be devised and monitored whilst there is no way of assessing their impact on women with disabilities.
5. Reproductive Integrity/Sterilisation
Health professionals often fail to educate and inform women with disabilities about their reproductive integrity. Too often sex education is denied to young girls with disabilities whose maturation is then hampered. Young girls with disabilities complain of being overprotected. They may then have less ability to cope with the altered physical and emotional states which hormonal changes bring. Too often health professionals regard women with disabilities as asexual beings who therefore do not need information about contraception, menstruation, abortion, pregnancy, childbirth and parenting.
One of the major breaches of the reproductive rights of women with disabilities occurs through the non-therapeutic sterilisation of women, especially those with cognitive disability (Tomas 2004). Sterilisation has been justified as a means of managing menstruation, ‘protecting’ from sexual abuse, and preventing pregnancy (Frohmader 2002)! Little is done to inform or support the woman and any carers involved about alternative means of managing menstruation.
Women with disabilities have been ill-informed about the hormonal consequences of the procedure, have often not been even been informed that the procedure was being done, and have been left feeling violated with a diminished sense of self.
From a more generalist viewpoint, we need to also look at the increasing use of pre-natal testing to detect and abort potentially ‘defective’ foetuses. Such testing reinforces the social unacceptability of disability and can affect how resources are allocated in the government disability sector (Gaby 2004).
6. Sexuality, Pregnancy and Parenting
Ante-natal and Post-natal medical information and support for women with disabilities is virtually non existent. In fact women with disabilities are actively discouraged from having children. Viewed as asexual, they may have had no sex education or relationship education. Viewed as asexual, health professionals may not provide information about in-vitro fertilisation, contraception, adoption, pregnancy support or abortion thus severely limiting the choices that a woman with disabilities has in considering her rights and options to become a mother.
For those with congenital disability the subliminal message is one of eugenics, that they have no right to perpetuate their disability by breeding. For them and those with acquired disability, the inference is that they would not cope with either pregnancy or parenting. There is the further hint of the cost to the community that a child with disability may bring. Subtle encouragement to have an abortion too often comes from health professionals. Such a decision should be made on the grounds of self determination and the right to bodily integrity (Frohmader 2002).
For those who already have children, questioning their ability as parents can undermine the confidence of the mother. A negative attitude from a health professional often legitimises an agenda which threatens to remove or actually does remove children from the care of a mother with disabilities.
7. Facing the Black Hole – Predisposition to Ill-health
Women with disabilities may have a pre-disposition to ill health. It is most likely that they are more frequent users of health services than men with disabilities or their able bodied counterparts. It may be that women with disabilities use health services for a range matters arising from their primary disability. It may be that their disability affects their immune system and predisposes them to secondary illnesses. However, it is impossible to vouch for the truth of these statements because there is a dearth of data about the holistic health picture for women with disabilities. We just do not know.
7.1 Harassment, Assault and Violence
Across all sectors of the population, women with disabilities are at greater risk of assault and violence than any other sector of the population. There is now limited research done by disability and assault services and through the criminal justice system (Goodfellow & Camilleri 2003) which looks at the incidence and extent of violence against women with disabilities (Cockram 2003). Some research has also been undertaken to look at violence as a cause of disability (Jennings 2004). However, virtually no research has been done to look at the health consequences of these bombardments against women with disabilities (Ibid.). Medical treatment is likely to be needed for physical injuries, depression, anxiety, eating disorders, substance abuse, sexually transmitted diseases and cervical cancer (Partnerships Against Domestic Violence & Access Economics 2004). We just do not know.
7.2 Mental Health
Nearly 18% of all female depression in Australia is associated with domestic violence. Moreover 17% of anxiety disorders are associated with domestic violence (PADV & AE 2004). once again it is not possible to say whether these figures are an accurate representation of the situation for women with disabilities. However women with disabilities are already pre-disposed to mental illness. More than fifty per cent of them report mental health problems as a dual disability (WWDACT 1999). We just do not know.
7.3 Prolonged use of medications
Having a disability is most likely to mean that prescribed medication is being taken over a long period. It is also likely that a number of different medications are taken. It is extremely difficult for medical professionals to know what the interactive effects of taking two or more medications is likely to be. They are to a large extent limited by the information supplied by pharmaceutical companies. Women with disabilities are therefore exposed to possible iatrogenic affects of medication. This is where a medication prescribed for one condition exacerbates the symptoms of a second condition. For instance, there is emerging evidence that a group of anti-depressants commonly prescribed can irreversibly increase spasticity in people with cerebral palsy or spinal cord injury. It is also most likely that long term use of some medications could have detrimental side effects. We just don’t know.
7.4 Frequent Medical Interventions
Having a disability can also mean that a person is exposed to frequent medical interventions in the form of X-rays, scans and surgery. Some of these procedures may mean a pre-disposition to cancer and some to post operative complications and side effects. Most of them mean frequent short term or long term stays in hospitals. Here there is an abysmal lack of understanding and expertise amongst health professionals as to how to positively interact with and manage women with disabilities who present for treatment. This is not done with any malicious intent but reflects a lack of training about disabling conditions. Women with disabilities who cannot be self advocates are most vulnerable in these situations.
Modern medicine has put many means at our disposal for checking on the internal workings of our bodies. Laparoscopies, colonoscopies, radiography and CAT Scans are all available for diagnosing and monitoring of medical conditions. In endeavouring to be thorough, and also to avoid exposure to negligence claims, medical professionals tend to routinely refer people for such procedures. For those who are frequent presenters, it is difficult to keep a balance between under use and over use of them. A useful test question is to ask if the results of a procedure are likely to enhance the person’s life outcomes.
8. Keeping it all together
One major difficulty for those with complex health conditions who are frequent users of health services is that of integrating information about conditions and treatments. Unfortunately this is difficult for the individual and for all the health professionals with whom she is in contact.
8.1 Fragmentation of health records
There are three parts to this problem for frequent users of medical services.
The first is the need to see a number of different health professionals for different problems. An individual may have files held in various hospitals. Reports will have been sent to the GP, but these are often perfunctory in content and there is seldom direct dialogue between GP and specialists. So although the GP is the holder of the various resulting reports, if he/she has no time or inclination to collate the information, then confusion results.
The second is lack of continuity with GPs. Women with disabilities in supported or rented accommodation may change address with relative frequency and may then be forced to change GPs. A change in the chosen GP’s consultation services, such as changes in clinic hours, may make a change necessary. A new symptom, such as a first pressure sore on a bottom, may necessitate finding a GP who does have an adjustable height examination table.
The third difficulty arises from the current trend in general practice which has seen the proliferation of clinics. A number of doctors can share a practice and maximise their flexibility of work hours. Although a patient will have a nominal, dedicated doctor within the practice, when visits are frequent, it can often mean that the patient will see several different doctors in succession.
Although the systems are available in all scenarios for sharing information, often they do not. There is a great need for individuals to be their own case coordinator, but even the most ‘on the ball’ person can tend to ‘drop the ball’ altogether when in a situation of ill health and stress.
8.2 Fragmentation of health services
Coordinating different health services is a challenge. Information technology at least makes this more feasible than ever before. Within a clinic GPs should be able to enter treatment notes and comments on a patient’s database record so that it can be accessed by all in the clinic who may deal with that person. However, human error can defeat the best database. Information may not get entered, a new file may be opened in error and the two not cross-matched, or the GP may be too busy to look at the accumulated plethora of data.
A problem arises where there is not good sharing of information between various services – the hospital team, the discharge team, Hospital in the Home team and the community nursing services. Many times there is a need to further share this information with OTs, Physios, Speech Pathologists, Social Worker and Case Manager. Information needs to flow from one service to the other. Often it does not. The file, or in most cases many files, are not at the right location at the right time. It is possible that the single, now bulging file is there, but nobody has time to read it. So each professional opens with a set of ‘triage’ questions which save them time, and wastes that of the patient. Moreover, it is possible for professionals in one service to proffer treatment or advice which conflicts with that given by another service. This leaves patients feeling even more confused.
Risk assessment tools developed in some health systems are useful to ensure that a person remains on file and can be cross-referred to different services as the needs arise.
8.3 Patient autonomy and Practicalities
In many instances health professionals have a great deal of faith in their clients. They trust them to pass on information, test results and appointment times. This may be laudable in many circumstances, and is a welcome change to a condescending stance. But where the patient is in frequent contact with a large number of health professionals, keeping all the information in one’s head or in one’s personal file is difficult.
It is difficult for any able-bodied who is temporarily in a health crisis. Add to this the possibility that the person in question has even a mildly depressive condition, exacerbated by the current health ‘crisis’, overlain by the fact that multiple health professionals (including nurses) have given various pieces of advice. The various snippets of advice may not be directly conflicting, but are certainly not corroborative. Add to this the fact that the advice is given by people not familiar with the patient’s disability condition, and therefore is often not practical. An exercise will be demonstrated which is physically impossible from a wheelchair. An exercise regime will be advocated which is impossible to fund (extra carers are needed) or sustain (taking up several hours a day).
Certainly there is the best chance of positive outcomes where a person is able to be their own advocate. They can then actively seek information about services available, can take advantage of the cross referencing between services and can follow up appropriately when the theoretically seamless articulation goes wrong.
9. A Prescription for Change
WWDA notes that there is now some of research and program activity in the area of gender, disability and health. We applaud these initiatives and those who are involved. Moreover we acknowledge that it is an area which has intrinsically difficult characteristics – as each component has its own idiosyncrasies. Collaborative work both within and across sectors is needed. Much more sustained action is needed, so that the gains which have been made are not lost.
A tangible gain will be realised when women with disabilities are automatically on a checklist for inclusion in the planning phase of any health policy, program or service.
Areas needing focussed attention are:
9.1 Research and Data Collection
Leadership is needed from the Commonwealth Government, to recognise that women with disabilities are a legitimate target group. Commonwealth Government support is needed in the form of funding for research, and for the collection of data. This is of particular importance in the area of preventative medicine and population screening programs.
Consultation with women with disabilities is needed. In addition women with disabilities need to be included on advisory bodies. They have insights to offer and much to contribute. As such, where they serve as unfunded community members there needs to be some form of remuneration for their input. This needs to be over and above the reimbursement of any costs associated with attendance.
Public meetings need to be held in accessible venues, with attendant care on hand if necessary. Information about meetings needs to be disseminated in formats which are accessible to a range of disabilities, and to locations where it is likely to get to women with disabilities.
9.3 Education and information
This is a two-way process. On the one hand information/education programs are needed which will reach women with disabilities. On the other hand programs are needed for health and disability professionals as well as women’s networkers. Information needs to be developed in accessible formats and disseminated so that it will be accessible to the maximum number of women with disabilities. Workshops and seminars need to be tailored to the target audience.
9.4 IT/Access Avenues to examine
Information and communication technologies (ICT) are being widely used for the dissemination of general health information (e.g. the Commonwealth Government’s www.healthinsite.gov.au and the Victorian Government’s www.betterhealth.vic.gov.au). However ICT should be further developed and used as a tool to enable rationalisation and optimisation of the delivery of services. There are fledgling programs already in use to coordinate disability services such as the Respite South West Online Care Coordination Project. ICT Initiatives which enhance the interaction between organisations and consumers are currently supported by the Department for Communications, IT & the Arts (2005).
The Victorian InfoXchange portal and its partner MyConnectedCommunity (MC2) also have great potential for individuals to share health information and form support networks.
However in any considerations involving ICT, we must proceed with caution. Unfortunately many women with disabilities do not have access to ICT and there are many barriers which prevent them crossing the Digital Divide. To a certain extent, the greater the reliance put on ICT, the greater may be the isolation of women with disabilities.
9.5 Articulation of services
Much strategic work has been done in some jurisdictions to develop protocols which enable good sharing of information within and between services. In the ACT much effort has been put into articulation of health services, but individuals who can self advocate can overcome the glitches as they occur. Vigilance is certainly required to maintain such set-ups for people with complex health needs. Existing models need to be extended to cover all regions and States/Territories. The portfolio of information about an individual needs to be built up which shows the chronology of all treatments, is not too wordy so as to defy picking up let alone reading, and preserves the privacy of the patient.
Work also needs to be done to streamline the handover from one service to another and between services and sectors where applicable. All these systems need to operate effectively even where the client is not a good self advocate.
WWDA acknowledges that gains are being made in the area of gender, disability and health. However, health services per se remain in a sick state for women with disabilities in this country. Nevertheless there is a great deal of goodwill in both the disability and health sectors to overcome the problems highlighted today. Goodwill is not sufficient. Political will is needed at Commonwealth, State/Territory and local government levels to fund initiatives which will enhance the health and wellbeing outcomes for women with disabilities.
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